Tackling That Troublesome Issue of ABA and Ethics

One of the best arguments against ABA is Michelle Dawson’s article, The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA industry.  If you google Applied Behavioral Analysis you will see glowing reports of its efficacy for more than 30 pages.  I actually stopped at the 30th page only because I didn’t have time to continue.  The first book I read on the subject of Autism was Catherine Maurice’s Let Me Hear Your Voice which details how ABA saved two of her children’s lives from Autism.  (I use this language as it is the language employed by the author.)  Catherine Maurice also likens Autism to cancer and ABA as the necessary chemotherapy.  The whole acceptance model obviously is not employed when thinking in these terms, how could it be?  And perhaps this is the single greatest problem when discussing ABA.   Ethics is not a word one associates with chemotherapy.  Why would it be?  The person considering chemotherapy is doing so because to not do so is to face the very real possibility of death.  When the language around autism becomes synonymous with cancer, one is saying to be Autistic is to have a death sentence.  And while that may seem like hyperbole to many parents and Autistics, it is not so far from the truth when we were informed of our daughter’s autism.

When Emma, then two years old, was given her diagnosis we were told, if we employed 40 hours of ABA a week she would undoubtedly be mainstreamed by Kindergarten.  This was what we were told.  This is what we hoped for.  This is what we chose to believe.  We were also told that a bio-medical approach when coupled with ABA was ideal and so we did that too.  We fought and received 40 hours of ABA a week, took Emma to a homeopath, who through more than a dozen tinctures, did a homeopathic version of chelation (i.e. removed heavy metals from her system).  I also took Emma to a cranial sacral doctor as well as had her on a gluten-free casein free diet.  Despite all of this, when she did not show the sort of monumental leaps promised, the ABA therapists said it was because we were at fault.  Never once did any of the therapists, supervisor or agency waver in their firm belief that ABA was a solid, “scientifically” backed methodology.  It was spoken of as fact.  We were the only variable.  We then did what they advised, we put Emma in an ABA based preschool, continued our own ABA training so we could continue doing it at home, hired an ABA trained therapist to help us implement ABA in the evenings and weekends and again were reassured that she would be mainstreamed by the time she was in Kindergarten.   We didn’t have any alternatives as far as preschools went, so I ignored my gut, my maternal instincts, warning me that this was NOT a method I would ever allow used on my neurotypical son and yet, was allowing to have implemented for my autistic daughter.

After a year, not only had Emma not progressed as the school had hoped, but she was actually regressing and was, what the principal informed us, a “red flag”.  The teacher, obviously aggravated with Emma’s lack of progress even suggested that this was Emma’s fault, that she was “refusing” to comply and expressed her irritation with us.  Emma, at the time was just FOUR years old.  Looking back on those first few years is surreal.  A four year old was being blamed and words like “manipulative” and “misbehaving” were used.  I’m going to interrupt this story to acknowledge, this is one story.  One family’s experience and is an anecdotal tale.  In no way do I believe for a moment that because ABA did not produce the results so many believed it would that our story is somehow scientific fact.  What I will say though is that ABA is, in my opinion, a flawed, at best, methodology and one that we do not, would not ever consider using with our NT son.  Therefore an important question must be asked – Why is that?

Why do we not use ABA for the neurotypical population?  This is where the ethical question must be considered.  This is where the “science” behind the use of ABA begins to fray.  If we really believe Autistic people (and children) deserve the same respect, are truly considered equal as those in the neurotypical population, ABA presents some real problems.   ABA can only really work if we view autism as a deficit and something that must be removed.  Autism is a complex neurological difference that cannot be removed.  I do not believe for a moment that there will ever be a “cure” for Autism.  It was explained to me by a neurologist that Autism is a web of neural pathways branching off and fusing producing new neural pathways, so random, so complex making it impossible to single out any one pathway allowing for a simple removal to produce a non autistic person.

I don’t believe anyone would argue against helping an Autistic person cope with the challenges they face, but the larger question is how do we do that?  Restraining someone who needs to concentrate by flapping is not the answer.  Insisting children sit quietly so they can “attend” and be “table ready” when flapping or twirling a piece of string actually helps them listen and concentrate does not make any logical sense.  Insisting that the non autistic way of communicating is the ONLY way to communicate is limiting and unhelpful to those who cannot express themselves by speaking.  Viewing Autism as a list of deficits that can be corrected through a series of discrete trials will not make an autistic person any less autistic.  Teaching Autistic people how to ‘pass’ so they can blend in better with non autistics is similar to the belief that a closeted gay person will live a happier and more fulfilled life by being closeted than someone who is “out”.

I don’t agree with the basic tenets of ABA because it is a methodology based in looking at those it treats as deficient and inferior.  This is not a model I believe will help Autistics or any of us in the long run.  We, who are not autistic are in a position of power, we are the majority, we are the ones making the rules.  That does not mean the rules we make are correct or even right.  We must be willing to examine what our objective is in using ABA.  Is the objective to make someone blend in better and if so we must ask ourselves why?  Before ABA is considered, ask yourself, is this a treatment you would employ for your neurotypical child?  What message are we sending our Autistic children?  What will this message do to their self-image?  What message will be internalized, a message they will carry with them well into adulthood?  Will this message serve them, make them feel good about themselves, help them lead happy, fulfilled lives.  After all isn’t that what ALL parents want for our children?

*I urge any who are reading this to read what autistic people are saying about ABA.  Ido Kedar, a non speaking Autistic teenager has written a book, Ido in Autismland where he criticizes ABA and describes why.  Any of you who are ABA therapists, it is incumbent upon you to read his book.  He is one of a number of Autistic people who are speaking out about ABA.

Other posts dealing with ABA:

Non-Speaking With A Lot to Say
Trauma & Autism
ABA

Emma as mermaid!

201 responses to “Tackling That Troublesome Issue of ABA and Ethics

  1. This was really enlightening for me to read, especially the ethical aspects of the discussion, and your perspective as a parent who has tried ABA. I first discovered ABA in a book for parents of autistic children that glowingly endorsed it. As I read through exactly what it involved I became more and more disturbed and finally looked up from the book and said to my husband, “Huh, they use dog training for kids with autism.” Yes, totally inappropriate but that’s what I was reminded of – the clicker training that we used to train our dogs.

    I’ve been reading an article about the roots of intrinsic motivation that compares two approaches to motivating behavior – one that facilitates intrinsic motivation by fostering/supporting competence, autonomy and relatedness and one that erodes intrinsic motivation by setting up dependence on external motivators. Something that really caught my attention is the idea that even a system of discrete rewards can undermine rather than support the intrinsic desire to do something. I’m still reading and digesting (it feels like a huge and complex subject) but I think it speaks to the two fundamental approaches to autism – acceptance/support vs. micromanaging/fixing. Sorry, not very fully formed thoughts this morning but I wanted to respond in some way.

    • Really enjoyed reading your comment. I was horrified when I read about how ABA was based on Pavlov, I kept envisioning those pigeons tapping the button with their beaks… But we were given other information that seemed to show ABA had moved beyond this kind of reward system. I remember going to an ABA based school where they had an enormous bowl of M&M’s in the entrance.

      • The small amount that I read portrayed ABA as a strictly reward-based system, so that’s where my thoughts were coming from. Based on the little I read, I had serious reservations, both a parent and as a formerly-autistic child. I’ve been meaning to read more about it because I’m constantly seeing references to it and your thoughts plus the link have given me a great starting point.

        I hope you had a big handful of those M&Ms! 🙂

      • We had always planned on homeschooling all our children, but actually briefly considered enrolling our son in the public jumpstart preschool after he complete a year of ECI at home and preschool specifically to receive this kind of “treatment”… but the more I learned about it, the more I felt the same as you and since I knew ultimately I intended to homeschool and cared not a cent if my son was “table ready” I decided, (as well as my husband AND our ECI providers,) that we probably did not really *need* to transition him to our school district’s special ed program, as everything they would be focusing on initially was based on the assumption that he would need to learn to sit tight in a classroom setting. And I agree with you about the connection with Pavlov… the more I researched ABA (as I pursued the possibility of doing this at home with him) the more bitter the taste it left in my mouth. I could not erase the feeling that ABA ended up taking gross (perhaps unethical?) advantage of the rampant OCD traits that many people on the spectrum seem to have to deal with.

        You are right that it is a touchy subject because many families swear by it, but it was not, and I do not think ever will be for us. To quote my husband,” Who cares if he refuses to drink out of a cup or use a fork or sit still at a table for hours?” Sure, our son may read a bit, then run up 5 stairs, then read some more, then run up the stairs again, and do this for more than an hour… but he has taught himself the alphabet, his numbers, the planets and various stars, and he spends most of everyday either studying anything he can get his hands on that has words on it as he teaches himself to read, or practicing his sign language in front of a mirror. (he just turned 5 btw)

        He is for the most part happy and full of love, and aside from some communication mishaps (Apraxia!!! argh), we really don’t have any significant behavior issues with him… My son is fiercely independent and diligent, and we know that having him spend hours everyday working repeatedly on one task that he had absolutely no interest in at the time would be a serious kind of torture for him, and he would have been miserable. When we read Julia’s infamous “Quiet Hands” blog post my husband and I were even more convinced that we did the right thing by deciding to pass on ABA therapy for our son.

        Thank you for writing this post… a difficult topic indeed. I am glad ABA seems to work for some people, but I also think it is important that parents understand ALL of their options, and with that understand that not every option presented them will be right *for them*. I encourage everyone to take all ideas presented with a grain of salt, and think long and hard about whether any particular therapy suggested to them sounds right for THEM, despite how strong the recommendation. Parents need to have confidence in their knowledge of what is best for their own children, and not let themselves be railroaded into any therapy for their kids when they have doubts. As we all know so well, all of our children may share the spectrum, but they can be in SUCH different places on it!

        • Katrina, perhaps if I’d known more people like you I would have had the courage to listen to my instincts and homeschool Emma. As it was, sadly, we knew of no parent who was homeschooling their Autistic child. It’s good to hear of your experience!

  2. Hi. This is most definitely a hot button topic. What confuses me most about your stance and others on it is, I often feel we are not talking about the same thing. I’ve heard people who often live in other countries talk about their experience being very clinical, dry or cruel. Very ridged or not playing at all. This experience of non exceptance of the child seems to come a lot from moms in other countries. So when I hear their experience with any therapy not just ABA or IBI but all of it. It seems the opposite from my own. I’ve read stories like yours and I blink away tears. Because this is not how we are treated. First off I don’t even know what people are talking about when they talk about cures homeopathy or anything. Do you know I have never been recommended by any Canadian Doctor to change my child’s diet or clense my child in anyway. I have only met doctors who say that this is natural. That we should teach our child and help them grow. The therapists who do ABA here may not be delivering the same service that yours maybe giving in your country. Children here have to qualify for the service. You can pay privately but then you risk that the service is given by someone not worth their salt. You can pay out the nose for someone who may not truly deliver the proper service. I love the school my child goes to. But both my kids don’t do it. My child learns how to do life skills and regular education skills. He eats a lot of candy ( it’s his best reinforcer) he plays more then he does sit down work. He has breaks to jump on trampolines, ride scooters, play video games. They build education and goals into everything. No one is abrupt, mean or cruel. He is approached with love and care. Every parent has the choice to modify plans and we are included at all times. We get classes given to us as well as we get to learn from the teachers. The teachers are respectful to a families privacy. They do not discuss child with anyone. They will cone to your home to help with home needs. We are offered family support and told about activities in the community that will help our kids. They will even come out and help you in the community for a day so they can see the families goals and reset their goals at school to meet the families needs. No child is blamed for regression instead they work harder to find out what’s not working for the child. This is my experience. I wish all could have it. I’m truly blessed with this opportunity. Sadly it ends almost just as it starts. Just as your kid gets the kick start to learning they have to discarge. Then it’s back to the mainstream schools where people maybe truly undertrained to teach a classic autism child. In Canada no one has ever promised they would heal my child in fact. When my children were diagnosed we were given books that talked about learning to accept your child for the stage they were in and to never give up tring to teach your child the skills he / she needs to have a productive life. Ive only met up with the word “cure” on line. Its only on blogs, on twitter and Facebook that I’ve heard people talk like that. We have only been approached with the play to learn approach mostly. ( read books More than Words, Building bridges). I wish therapy was the same every where. I guess I am truly lucky to live in an area of Canada where the doctors and therapists get it. Maybe it’s cause our health care is different. I wish it was funded more here. The medical profession here works super hard on kids and does it with pride. Our government should be proud that it’s started the base to a good model. I just wish they would reduce our wait times and allow us to stay with a good service that works for a family longer. When ever we go through discharge from the ministry of health services we fall apart. Mostly cause their is no skilled help out there. At least nit without the big bucks or the risk of running into someone harmful. Wishing you the best of luck with your daughter always. You sound like you have been through a lot but have come out the other side okay though. The journey through raising a child on the spectrum isn’t easy.

    • Totally fascinated with this comment of yours. It does feel like such a massive disconnect. But I believe Michelle Dawson who wrote the article I linked to in the first paragraph is Canadian. Do you know if your experience is typical of all of Canada? It’s always wonderful to hear when someone has had a very different and positive experience with ANY methodology. So glad yours and your child’s has been a good one. 🙂

      • I don’t know when the book you mentioned is written. I only know what service my child receives. Engine a happy kid running around a room pointing to objects that are real and relevant to him self and being encouraged to say or find a pecs card. I do not have the wordy way of expalining his therapy. I understand the theories you all speak of I do read many books. My first books on ABA seemed aggressive. This was one of the reasons I discounted the idea of the service for my eldest. I thought the moms who talked about ABA were clinical and treating their kids like science experiments. I formed my opinion based on what I read and not on the service it’s self back then. I was one of the moms that fought schools for complete inclusion. I based my fight on my eldest child’s needs not on the spectrum as a whole. When I was faced with educating my second child I was shocked at the differences. His first school was ridged and not what he needed. He acted out, he wasn’t him self at all. I know when he’s not happy at a place. He’s really happy at this school. He was happy at a mainstream school too. So I won’t put all schools down. He’s not strapped down at his ABA school. He’s called by his nick name and given lots of hugs and support. He laughs a lot there. His numbers are done different then in regular school. It’s often done to meet with his sensory needs. Can bounce and count. Kids are not made to do stuff but are choosing to do stuff with loads of positive reinforcement. He chooses to learn there. I can’t say it’s like this everywhere. It’s just what I met with when I was at the end of my rope with fighting with schools for service and EA staff time. My time came up on a long wait list and I thought I will take my shot at it. I was promised nothing. But given respect and a lot of sensitivity to my family and are needs. They openly told me they don’t cure Autism they teach the early skills to learn so that a child has a chance to beable to cope in a regular class setting without as much support. This does not mean he won’t need support but that he may just need less of it. They have another option here as well. You can hire your own ABA for home and run your own program. The wait time is less for this option. Often parents are desperate to get started so they take it. The government puts a disclaimer that they are not responsible for the service you are provided. That any damage your child is claimed or perceived to have received is directly your fault. That’s paraphrasing the disclaimer but basically it. If you hire a snake oil salesman or some lunatic then that’s on you. They are not responsible for your uninformed judgement of hiring nutty people. They are only hiring people for their centers who have a strict code of ethics. They must meet educational guidelines. They are followed by supervision. It’s nothing like what everyone talks about here. This is not my experience. I’m not saying that yours isn’t accurate or hasn’t happened to anyone. It’s just not really what happens everywhere.

        • So glad your experience has been a good one. Sounds like you’ve fought hard. Really appreciate your comments.

          • You know it should say imagine right! I know, every letter written to you is like this. Lol very sad. Oh well this is me what can I say. I spell badly so even auto correct can’t correct me properly. It just does what it wants. Lmao cause it just seems like I just don’t care. Thanks for always turning a blind eye to it and being awesome about it though. You have always treated me and everyone who writes to you with respect. Some people wouldn’t. But you’re a person who practices what you preach. You truly do accept people and respect people. Your Emma is in the best hands and will go far in life.

            • Aww.. what a lovely thing to say! Thank you so much. 🙂

              PS: Yes, I knew you meant imagine! And just so you know, this happens to me every single time I post a comment on someone else’s blog. It would on all my replies on here too, but I can go in and edit mine!

        • It’s the same in Australia. ABA is not like this. My family hasn’t used it with our boys but we have met our share of “Professionals” wanting to cure our sons with strange techniques…

        • Nassim, this comment reads so much like an infomercial for you and the schools you so proudly write about, I nearly did not allow your comments through moderation. Having said that, there is so much that is troubling about your comment, it would take a long time to go through it, so I’ll just begin with a couple of the worst statements you make beginning with: “I’ve never read an evidence-based peer reviewed research article that says providing all of these therapies together or even consecutively is something someone should consider.” Have you ever read the so called “scientific evidence” on ABA? Because if you did and did a thorough, non-biased search you would find that those first “scientific” findings on ABA have never been successfully replicated. No one has ever gotten the same glowing results Lovaas did. Even a colleague of Lovaas’, Catherine Lord admitted as much when she said Lovaas, “tried to structure things in a way that… did not reflect what really happened and certainly cannot be used as scientific evidence.” If you did a little reading about ABA you would also have come across plenty of Autistic people who have and are writing about their personal experiences with ABA and subsequent trauma and PTSD they experience now, as adults, as a direct result of it.

          “What’s wrong with using ABA to change an animal’s behavior? WE are animals. Just because we are smarter animals than any other does not mean that behavior change is different for us than it is for them. The rules and contingencies of behavior change remain the same. This is part of the science of ABA.” That you see nothing wrong with these statements is further evidence of your biased thinking regarding autism and Autistic people. Likening humans to animals as justification for a particular treatment is called “dehumanizing”. Dehumanizing is what is done on a regular basis to Autistic people. It is so imbedded in our culture at this point, people like yourself do not even realize they are doing it!

    • My experience with ABA has been what 1funmum describes and not what the author of the blog states. ABA and the therapists we have seen have been respectful and a blessing to my family. My son is currently attending a therapy based school and is doing incredibly. Maybe the ABA that the author experienced was more of “dog training,” but none of what I learned was like that. Who doesn’t operate by working to achieve your motivator? Maybe the difference is the age of a child. I didn’t experience ABA for young children. My son was 8 years old when we first started with ABA. Maybe that is the difference.

      I use the techniques that I have learned in my parent ABA training in many other aspects of my life. It really helps me relate to others and to tailor my communication to be more effective. As a manager in a business environement, I have found that ABA training can works wonderfully. I don’t use M&M’s as a motivator because that wouldn’t be a motivator for business. Just like M&M’s or even food may not be a motivator for every child.

      • Hi Heidi,
        I think this comment thread shows a pretty wide range of experiences and it is clear to me that the “ABA” my daughter was given and what I’ve witnessed being practiced in many of the ABA based schools in Manhattan is very different from what others have received. I can only speak of my family’s experience and what I’ve personally seen; as I think I made pretty clear in this piece, I in no way present this as anything more than that.

        My biggest issue with ANY methodology is how it affects children emotionally, are they being harmed? In our case the answer, sadly, was yes. She was. The emotional toll ABA took on Emma was profound as were some other methods we tried later. She still refers to them. I was so desperate to “help” my daughter I put aside my concerns. I was wrong to have done so.

        I think it’s wonderful that you’ve found something that helps. It’s always terrific to hear of others positive experiences.

    • I appreciated reading your comment, 1funmum. Reading this article, it shocked and confused me, even made me grind my teeth, thinking of the huge disconnect within ABA. While I witnessed the positive measurable growth ABA therapy can provide, I do believe it is very possible to receive poor therapy within ABA, just as it is possible to receive poor medical care at a hospital. Theories and practices can differ, and not just that, the field is still growing, as therapists and parents, we are still learning and discovering best practices, this is the same for any field, particularly a science field. Ariane, although I disagree with taking issue of Pavlov’s dog playing a part in behavioral therapy, simply because that particular experiment taught us a lot in regards to behaviors, I’m truly sorry for your experience. I would even encourage you to try ABA services through another organization, if that is an option. I know with the best therapist for your family, you would see positive results that you would happy with, it may be a matter of finding a good fit. I wish you the best 🙂

  3. Thanks for sharing this Ariane. I am always interested in hearing about ABA because it is so prevalent and was not what our family was steered towards by professionsals so I know very little about it. My son’s first SpEd teacher post diagnosis was rabid DIR and was clear we were only to use DIR providers with him. She was very disdainful about some of the previous things that had been tried with him, that I now realize came from an ABA framework. To be fair i am not sure the DIR methods really did much for him, but they certainly didn’t work against him. One of the biggest things people try to use with Charlie is the bevavior chart to earn rewards for good behavior. I think this comes from an ABA framework and is something I am constatnly fighting new people over. The truth is when Charlie’s disability is accomodated correctly he behaves wonderfully and when it’s not there aren’t enough M&Ms in the world to matter to him. So, the behavior chart just sort of ends up hanging there as a reminder of his failure. But, people love to try it because it puts the onus on him instead of having to do the hard work of discovering how he needs to be accomodated. anyway, I am lucky his school is not among the behavior chart crowd. thanks for sharing your experience.

    • Yes, we did DIR as well, trained with the late Stanley Greenspan and as this followed on the heels of our pretty dreadful experiences with ABA we found it thoroughly refreshing. However, like you, we also aren’t sure it moved her forward in the way so many describe their children doing. There was no rocket blast of progress, but at least she didn’t regress. One of the things we found impossible to figure out how to do was academics within the floortime approach. That’s something I would love to hear discussed. Emma’s new school leans toward the TEEACH method (I think that’s what it’s called) with picture charts that show the various activities in the day, but her head teacher is enthusiastic in trying anything. I sent her my friend Ibby’s comments from a question I posed on Ibby’s new blog and Em’s teacher not only read Ibby’s response, but printed it out and then came up with some wonderfully inventive and creative suggestions regarding her homework that we will try in the coming weeks. I couldn’t be more thrilled. Glad Charlie is having a better time at his school!

      • o, I love hearing that her new school is so open!

      • I think what we call “regression” in response to a particular mode of instruction, is actually a logical response of “shutting down” by a child to the wrong approach. It is no different than if we adults are forced to learn in a way that is not how we learn: we will shut down to preserve our sanity if we find that we cannot modify the environment.

        For example, I saw what appeared to be “regression” with my child, with the first ABA agency we worked with. They used mass trialing DTT but did *not work at the table* (hence, it is not about whether a table is involved, but the approach itself that’s the problem).

        What my child had previously mastered, he began to “un-learn” the skills because the approach used gave him the signal that what he was doing was incorrect even when he was responding correctly. If you responded with the correct answer the 1st time and you’re asked the same question, you may answer correctly the second time (“maybe this person didn’t hear me, let me say it again…”) but after the 5th or 6th time you either shut down or you start manipulating the situation by giving the wrong answer or trying a different strategy (like creating a behavior). This was exactly what happened. Also: His “echolalic” behavior returned, and I knew why and how this return was a very logical response to the way he was being “taught.”

        At no time did I feel it was my child’s fault or my fault, although I did blame myself for waiting as long as I did (4 weeks) to part with the agency.

        Part of educating parents about different instructional approaches is to emphasize the importance of OPTIONS. “Not all ABA is the same” and even when the approach may be valid you can still get a lousy instructor to muck it all up because they suck and have no business teaching children.

        I can’t say I “disagree” with your position on ABA because you worked with Greenspan’s approach (which in my too broad of a definition, constitutes a behavorial modification approach) and that particular approach created a more conducive environment to learning, while another (I assume DTT like) format was harmful. I had experienced the same, except I look at behavioral modification as the same “idea” with different angles. Perhaps the extent of my disagreement has more to do with better defining what “ABA” is meant in the post, to educate parents on the spectrum of ABA approaches available. Bryce of Autcast for example in one of his videos, equates ABA at the same “strength” as bleach, which I found appropriate, exactly because this is a powerful interventional method and if you’re going to subject any person to a powerful intervention especially children, then due diligence and all the safety & risk factors must also be examined.

        I’d also emphasize the importance of looking at the data collected, and asking lots of questions. I did that, and up front I had let the agencies know that I ask a lot of questions and that I look at the data sheets.

        This is an important discussion to have, because ABA appears to be the de facto “treatment” and like all interventions, the pros and cons must be addressed.

  4. I, too, find myself very confused by articles like these and stories I read online. I have two autistic children and they both had ABA therapy provided by the same therapist (but years apart). Their in home one-on-one therapy was truly fun… there was no restraining, no attempts to stop their fidgeting or stimming behaviors. As a matter of fact we were often told that it was to our children’s detriment to try and stop the stimming behavior because its necessary behavior for them. Our experience was entirely positive. Maybe some ABA therapists modify their approach?

  5. A huge concern I share is that some practitioners still use restraint to get a child to sit and “engage” and of course, Lovaas used aversives in ABA’s original incarnation. The cognitive neuroscientist in me balks at this. Is the child behaving in as the therapist requires because he or she will get a reward or does the child see a complex path to regaining his/her freedom marked out with, say, cookies?
    We haven’t used ABA with our son but we took part in a study evaluating intensive interaction which is more naturalistic, doesn’t force engagement. At the end the only real difference that could be noted in my son’s behaviour was “[the Pwdin] looks at toys a little longer before he puts them in his mouth.” That made me giggle. However, when the videos of him were coded for gaze direction and other markers, it could be seen that, in his case, he was learning to anticipate actions better. In all, I think the therapy was good for us as parents, giving us new ideas for play and what cues to look for from our boy and how best to respond to them. In fact, it was an awful lot of fun.

  6. Because someone convinced me that the “new” ABA was not the old Lovaas ABA I let my older son be taught that way for awhile. While his actual teachers were lovely, the program itself was a complete waste of time. He was memorizing useless information. When the BCBA finally “explained” to me that because of my son’s “limitations” he would not be able to learn any other way I finally wised up. I knew that wasn’t true. You see, some “expert” had once said something very similar to my own mom about keeping me in special ed. I fired the BCBA. I started teaching him myself by using things that really interested him and while utilizing a multi-sensory approach. I gave him access to interactive technology. I let him explore so that he could learn how to self-direct. I let him move around as much he needed to. I taught him age appropriate academic skills while assuming that he COULD learn. And you what? He did. He went from using about ten words consistently to speaking in 2-3 word sentences within 3 months. He started to learn how to read and to spell and to type. He became more independent and confident. He is thriving. He loves learning. He is proud. You can keep your “gold standard.” It really is based on a deficit model and the assumption that being indistinguishable from NT’s is every Autistic person’s goal. It doesn’t really matter how “natural” you make it if what you are teaching is flawed.

    • Nadine, you did the right thing — but I’m saying you are among the minority because we parents are often frightened that “if we don’t follow the course, we are damaging our kids” and then we are scared into doing what we feel isn’t right for our kids. I’ve begun to realize that I’ve been led to question my parental judgment in ways I’d never be challenged otherwise. I’m fine with collaborating with experts, but they work from statistics and their “aggregate” experience, and my child represents N=1 and they need to “get this”.

      Reading your experience with teaching your child reminded me of a time when we got my son a puzzle of the united states. It was a wooden puzzle and he really, really liked it. He would do it many times a day. At one point I became conflicted. Because I was told by “experts”, that this was called “perseverating”! My child is perseverating on a puzzle! I asked a friend who works with many children, what she thought, and she said sometimes people do the same things over and over as a type of meditation. She then recommended that I buy other puzzles of similar thickness and dimensions to give him variety….

      I didn’t do that, I let him continue doing the puzzle as often as he liked. But then I also began to pay attention to how he was doing the puzzle, so I could learn more about how he was learning or processing. Then my husband made it a game and flipped all the pieces over and see whether my son could still do the puzzle (he could, apparently it didn’t matter if the pieces were upside down and he couldn’t see the colors of the pieces, he was going by shape). Then we used the puzzle “game” to reinforce skills he already knew like colors and letters. Then we did get a bit annoying with him by making him complete the puzzle differently than he was used to doing. Then I bought a “to scale” puzzle of the united states, which included Canada and Canadian territories, and let him try that. I also let him play on the ipad a U.S. puzzle app (that goes only by shape and no letter clues). In short, we got so much educational mileage out of a so-called “fixation” that I began to trust my own observation more than statistical guesses of what my kid’s doing.

      (And would you believe it, now he can’t care less about doing the puzzle… he’s moved on to machinery 😉

    • That’s awesome Nadine… we are right there with you in our approach with our son. You really nailed a lot of my motivation by pointing out the inherit flaws of consistently approaching Autism through the “Deficit model.” That is such an important point… trust that your kids can learn anything, no matter what is going on, and they probably will figure out a way to do just that, and surprise the hell out of you! Great comment 🙂

    • Thanks for your comment Nadine, this was the larger point I was trying to make. The idea of the deficit model and how we then teach a child whom we perceive to be deficient as opposed to a child who is seen as competent. As Jane commented, it does make all the difference in how one then goes about teaching and what therapies one chooses. Unfortunately this was not something I understood when Emma was first diagnosed. I am grateful I have now embraced it and it has made a tremendous difference for all of us.

  7. OK I’m weighing in as a parent who believes that “ABA” was helpful for my child — but with many (MANY) caveats.

    (1) I knew from the very beginning that behavioral interventions were based on Pavlov & Skinner’s work (was trained as a scientist, thus I came across it a few times during schooling for my science degree.) I do not have a problem with this, primarily because I don’t equate the subjects on which these behavioral approaches were derived (animals, birds) as THE BELIEF that we humans are animals/birds. However, I do believe that we are all driven by a subset of signals that trigger our “primal” brain, and therefore, this is what makes behavioral techniques powerful: they tap directly into our instincts and reflexes of pleasure and pain.

    (2) We *do* use behavioral modification for neurotypical children, only we called it “good parenting.” This is where we were expected to guide our children to preferred behaviors based on our understanding of their developmental readiness. The difference between behavioral modification based approach for “regular” kids and autistic kids, is that we AUTOMATICALLY PRESUME COMPETENCE for regular kids, hence our behavioral approaches take this into consideration, and we pay attention to the children’s responses as part of pre-verbal dialog.

    However, our behavioral approaches for autistic kids AUTOMATICALLY PRESUME INCOMPETENCE. Hence our behavioral approach takes no consideration of the possibility that children who appears “non-verbal” may not progress through pre-verbal/verbal lines of development, but that their (sensory) disabilities are interfering from these lines coming to the forefront, and this meant we needed to work on alternative modes of thinking.

    Human beings for the most part do not enjoy going into alternative modes of thinking. It takes too much work, can be very difficult, and interferes with basic “quick rules and compartmentalization skills” we use for every day life.

    Hence, I disagree that regular kids don’t get their behaviors modified — if this were true, we’d have a chaotic society of adults who grab each other, take things, and otherwise behave horrifically (you know, adults who act like 3 year olds). That said, I have seen an increase trend of children who are given free reign of their behaviors without guidance, and I am continually surprised at how much “rudeness has become OK” in our society.

    (3) ABA is a generic term in my mind, and is a spectrum of approaches. You can say DIR, RDI, DTT, NET, PRT etc… these are *all* ABA to me. They differ of course, but the goal is to have the net sum of behaviors be conducive versus non-conducive to a quality of life for the individual we can accept.

    Thus I don’t accept ABA as evil because if I had a regular kid, I’d be employing behavioral techniques as part of skills to integrate into society. I also would have the luxury to call it parenting, not a threatening emotive term like ABA. But I’d be doing very similar things.

    I take issue with certain forms of ABA, such as mass trialing/DTT format. I have seen the harm this has done to my child, primarily because the people implementing this approach took the position of “presume incompetence”, which pissed me off enough where at one point I interrupted the session and sent the person away. Then I fired the agency that claims to use a variety of approaches but is unable to identify my child’s strengths and teach from his strengths.

    We began working with another agency that employs the NET approach, which aims to teach in the natural environment as much as possible. This has made a huge (and I’m talking HUGE) difference in the rate of progress we’ve seen with our child. What also mattered to me, was the position assumed by my child’s instructors (I don’t call them therapists, I call them teachers/instructors because this is how I see them and label them and this is how I want my child to learn to see who these individuals are, and not to feel like he is being “treated” — he is being taught skills, not “treated for an illness”). These individuals behave in a way consistent with presuming his competence. When they say “he’s smart”, they interact with him and treat him like he is smart.

    Thus my main issue with the autistic community’s view of ABA, is when it becomes “all or none, black or white”. We all do some form of ABA. I have done management consulting and I see “ABA” principles applied in companies. But do they call this ABA? No. They can call it something else (being a good leader, being a good coach/manager) because they presume competence and they have the luxury to call it a cool sounding name.

    • This. I absolutely understand this. No one has ever treated my son or my daughter as anything less than the valuable and intelligent people that they are. Their strengths and interests were used to motivate gently and their “ABA” sessions were filled with giggles and laughter, as well as learning in a way that progress could be measured, just like I’d measure a neurotypical child’s progress. Thank you for clearing that up in a way I finally understood. =)

      • Sarah, you’re welcome. I think it is dangerous to siphon off ABA as if it existed for the autism industry (and I said autism industry on purpose).

        Back when Pavlov and Skinner were studying behavior, they weren’t sitting around saying, “gee, let’s figure out a way to cure autistics” — they wanted to know what drives behavior in general and are there universal drivers that could cut across even species lines (I used to be a microbiologist, I tell you, BACTERIA RESPONDS TO ABA!) — but they cannot ethically use human beings.

        I’ve thought long and hard about this, as a scientist (though not in psychology) and also through my own observation and philosophy of “treatment of a human being” (treatment as in, behaving toward, not curative treatment, darn English words with multiple meanings).

        Thus I don’t believe in the “40 hour week” model, because if my kid wasn’t autistic, I’D REFUSE TO MAKE HIM WORK 40 HOUR WEEKS! We also believe that there are REASONS for behaviors (i.e. we presumed competence in our child, even when he was not verbally communicating, I assumed he was trying to communicate to me through other means, including tantrums once I became aware of a different way I should be thinking about his behaviors).

        I also became aware, that my own behaviors affected his behaviors, he was responding to my behaviors. Of course having an understanding of an “ABA framework” such as “ABC” helped me better examine my own behaviors and how I was confusing the hell out of my kid. If I had a regular kid, I’d also confuse the hell out of that kid — because inconsistent behaviors confuse the hell out of human beings who are trying to amass all available data and then make some form of a “rule” to work through.

        I think ABA has been hijacked by lazy people trying to be helpful and in some cases greedy people trying to make money, and unfortunately this made ABA a polarizing political discussion (“to ABA or not?”) and I am more interested in “let’s do this BETTER, for starters, presume competence — how will you approach this differently then?”

    • You said: We *do* use behavioral modification for neurotypical children, only we called it “good parenting.”
      This made me laugh. Thank you 😀

  8. Sarah it’s important to observe the therapy your child gets. The strict brand name ABA had as it’s objective making the child indistinguishable from peers which usually meant stripping them of anything that looked autistic. There is behavioural therapy that isn’t ABA that can combine elements of other approaches. Because of brand name recognition some people carry on calling that ABA.

    Behavioural therapy can and does work. One just has to be very careful about the how and the what which is where the problems have arisen. The first generation of autistic kids subject to the strictest form of ABA as it emerged are for the most part emerging into adulthood very damaged. Many of the friends I met on IRC 15 years ago had their children in that kind for at least a time. All of them came to the realization that something had to change.

    What chills me is that even now on a semi dead email list I am on the strict ABA people are peddling their wares. A parent writes in that a child is getting worse despite therapy. Questions on my part of therapy is part of the problem, what kind etc, sensory issues and so on go unanswered and eventually a snake oil salesman jumps in with an ABA pitch. ABA actually fails most of the criteria for a good behavioural program in it’;s strictest form.

    An approach that uses elements of behaviourism with other knowledge and approaches is something I would be in favour of. One of the big problems to me as someone who actually did study a lot ofr behavioural science is it gives all behavioural approaches to an issue a bad name. I don’t believe behavioural therapy is enough in itself (which makes me a failed behaviourist by my profs definition but I can live with that.)

    What chills me is people with very little qualification can depending on regulations in an area set themselves up to torture autistic children full time. Some improve by some measures but if you look deeper they wind up with a whole host of new issues. What to do for and about those deeply wounded victims of therapy haunts some of us.

    I was for the most part lucky. By being born when I was if your family didn’t opt to institutionalize you and start fresh there wasn’t much beyond speech therapy and recommended activities to be implemented in the home. I was struck many years later by how similar the list the school came up was to what Temple Grandin’s mom said her nanny insisted on doing with her. I had never heard the reasoning behind some of the activities until then. I would have liked more social skill training I suppose although as an adult I reject many of the programs based on the untruthfulness that is part of what you learn. I suppose even as a child I would have resisted that. But maybe some better training on how to tell when people are joking would have been helpful.

    • This makes perfect sense to me. Thank you for explaining!

    • Gareeth: actually yesterday I was watching a lecture Grandin gave at the MIND institute (UC Davis) and I had a negative gut reaction to her urging for “early intervention, at least 20 hours a week” for autistic children. My negative gut reaction wasn’t the early intervention, or even the 20 hours a week (and talk about feeling guilty and uncomfortable having any negative feelings at all about anything Grandin says…) — it is due to “what is going to happen after she utters these words.” Because you can have 20 hours of really harmful intervention. Or you can have 20 hours of really helpful intervention. But Grandin didn’t go into that — she never explained 20 hours of “what, exactly” and not every parent can afford to hire a nanny who comes to play turn taking games, and not every nursery school is run well or run by former speech teachers.

      I guess I’m saying that I know what you mean about desperate parents who are the most vulnerable to the snake oil salesmen.

  9. [adding to the above, in terms of aversives & restraints]

    Since I take the stance that if I had a NT kid I’d be doing “ABA like techniques” in teaching certain skills, this is how I’ve always guided myself on what type of approach along the “ABA spectrum of approaches” I’d welcome, versus kick out of my house.

    A general principle I use is, “if this is not acceptable for a regular kid/person, it is not acceptable for an autistic kid/person.”

    One of the arguments I’ve heard in favor of aversives has been stated thus: “If a child is gouging out his eyes, I’d rather slap the child across the thigh than have him blind himself.”

    OK, I get this logic. You are going after the lesser of two evils. But this should be the action of last resort. The first actions should be, “why is this child gouging out his eyes?” Is the action a response to something, and therefore the child is also choosing the lesser of two evils (having a nervous breakdown due to sensory assault versus gouging own eyes for temporary relief of some sort)?

    There is truly, honestly, A TON OF LAZINESS GOING ON when it comes to deciphering these children’s motivation for actions. This laziness is what needs to change.

  10. My stance on ABA is ever-evolving. It seems like we all use some sort of operant conditioning throughout our days in an effort to meet our needs. Even still, I have mostly always frowned upon the method of a more structured, clinical ABA simply b/c of the way I feel when I am watching it applied to someone else. I feel anxious and edgy because it feels unnatural and robotic (and dare I say forced) at times. My child with autism has attended several programs that employ ABA. He has always reacted negatively to this type of interaction and he fully explained why to me a few weeks ago.

    At his first school, he was probably the most independent child in his class. He not only hated going to school, but would explode with relief when he came home. Although he is now verbal, he doesn’t always have the words to explain things. It wasn’t until we had contracted with a very talented and gentle ABA to help our son move through some academic issues while home schooling this year that I truly understood where my son was coming from. After the very first appointment, when the points were being collected and the ABA terminology were presented to my son, he commenced to a 30 minute meltdown. During this meltdown he said, ” ABA makes me sad. I just feel SO sad for the kids who are at _________(old school) and still have people talking to them this way. It is SO disrespectful!”

    My ‘ah-ha’ moment came just on the other side of my son’s meltdown. DISRESPECTFUL. Even the most respectful people are trying to change very intricsic traits of these children…and it mostly doesn’t feel good to them. I do see the value in breaking down tasks that a child needs to master into small chunks…so I get that this can be very helpful. I know that tasks are challenging and kiddos are anxious and mentally/ physically exhausted…but I also know that there are some things that they will need to learn, not to conform to “normal” standards, but just to function at a very basic level. My question is, how do we best support these kiddos and still keep their feelings of value and worth intact? I’m still searching, but mostly I just go with my gut instinct.

  11. Jane as to your comment: (3) ABA is a generic term in my mind, and is a spectrum of approaches. You can say DIR, RDI, DTT, NET, PRT etc… these are *all* ABA to me. They differ of course, but the goal is to have the net sum of behaviors be conducive versus non-conducive to a quality of life for the individual we can accept.

    Technically that’s not true. All of those are behavioural therapies and while some people who market themselves as ABA therapists have indeed modified their approaches to included more of that and to be non-behaviourist in a way in considering some non-behaviour based issues for the non-scientist the whole field can be a landmine.

    When I was an undergraduate I initially hated my behavioural classes. My professor insisted unlike any other field of pscyh though he could say it works. Over time I came to realize that for the most part he was actually correct and I did use behavioural approaches all the time with the children I worked with and even myself. It wasn’t ABA though in the way it was defined when it emerged or even is now by it’s strictest adherents. The only other course I found remotely useful was sports psychology and a course in motivation both of which of course had a pretty heavy behavioural component. Sports psych applied very practically and motivation addressed not so much how to motivate but what goes on in the brain etc.. and how that interplays with emotion.

    There is no single adult autistic view on ABA. I have been shunned many times by my own peers in the adult community for even knowing as much as I do about behaviourism. My prof had worked with Lovaas when he was a student and believe me the papers I did on how and why that work was important would have led to some sort of autistic version of being driven out. On the other hand I also wrote papers on what i considered ridiculous applications of it. Appropriate toy behviour comes to mind. I think I may have jeopardized my grade a little bit when my conclusion after wading through 50 years of trying to teach autistic kids to play correctly pretty much came down to leave those kids alone. Of course my objection was partially based on something the researchers couldn’t know. A leap from how autistics play to a lack of imagination has always been made and while I find the occasional person who played in the stereotypical way who doesn’t recall any imagination based content many like me had entire universes in our head. (That’s separate from when the same play like behaviour might be used solely for comfort in which case I didn’t)

    It’s a loaded issue. As long as the parent is informed enough about behavioural science and developmental issues it is fine. The problem is many parents are simply desperate without the background to make an informed choice about this and won’t get it if that’s the way the service providers in their area have decided to go.

    • Gareeth, since I have not studied the history of the evolution of ABA and how this became known as “ABA” from Skinner / Pavlov’s time (maybe it sounded more scientific than “operant conditioning” which can be easily equated with “brainwashing”?) I will take your word that my personal definition of ABA is a lot more broad and inclusive of the idea of “behavior modification in general” than the people who coined “ABA”.

      I’ve read the Lovaas paper, worked with one of his former students (the director of the agency I fired in my prior post), and this person did say to me that he was so excited to work with my child because my child fits the profile of those who has the best outcomes with a 40 hour a week program (and this meant, “become indistinguishable from peers.”)

      At no time did the director ask me if this was what I wanted, because I’d have said, “what makes you think I want my kid ‘indistinguishable’ from peers?” For some reason people naturally assumed this is what I as a parent want — because they are so used to assuming and putting words into autistic children’s world, maybe they are now doing the same things with parents like me. I do NOT want my kid indistinguishable from his peers, that’s not my interest. I’m interested in my kid gaining skills of self sufficiency, and this definition is tailored to where he is at a certain stage of life. I am interested in finding out those “splinter skills” (ooh, another buzz word I learned from ABA world, like it’s a bad thing, only I see this as “why the hell will I want to discourage splintering of skills when my child obviously can do this with ease? Isn’t this called ‘building his confidence’?!”

      Yes to splintering skills! Yes to stimming! Yes to watching the same videos over and over again (but to be fair, I will stop this the way I’d stop a regular kid who has been watching TV way too long and engage the kid in something more active)! But also YES to learning skills in social pretending!

      I am weird that way.

    • Gareeth you know what I realized: there are ABA fundamentalists, and then there are “ABA for the rest of us.” Given that we are looking at a *spectrum* here, it can only make sense for behavioral approaches to also assume a “spectrum of approaches”.

      Thus just as we don’t judge an entire community based on the history of the extreme / fundamentalists — same goes for ABA.

    • “DIR” or “Floor time” created by Stanley Greenspan is not considered ABA… just in case there are any parents seeking out specific components of ABA.

  12. “Despite all of this, when she did not show the sort of monumental leaps promised, the ABA therapists said it was because we were at fault.”

    For a long time I thought exactly this. Then I REALLY thought about it.
    No one ever said this to me or my wife. This is just how I took it because I was wracked with panic and guilt.

    My son is six. Recently we took him to a new neurologist. When informed that he’s had ABA since he was two and still can’t really communicate she said that led her to believe he had another “cognitive issue”. I told her he could count and identify the alphabet when he was 1 but then he just kind of stopped. She then said “ok we’ll proceed as though we’re just dealing with autism then.”

    His school is 1 on 1 all day long. They use ABA but are extremely flexible, and will try anything that might work. We send him with his ipad everyday now.

    I’m not going to be in a panic about this anymore because that doesn’t help him. I’ve developed my own answer. My answer is taking one day at a time. Providing him with a happy home life and accepting him for who he is. And, here’s the real kicker, accepting myself and my shortcomings.

    I’ve never thought of him as sick.

    Dealing with the array of people that came into out lives with his diagnosis completely robbed my of my self confidence and ability to make decisions properly. But enough time has passed now and I know what’s best for him because I am his father, and I ENJOY being his father. He can’t speak but i know he loves me.

    He gets therapy all day. He has people in his face ALL DAY. In my heart I know the best I can do for him is make the nights and weekends happy and comfortable and fun. If I am wrong and should be adding hours more therapy then I suppose I’ll just have to deal with that when the time comes.

    But I don’t think I am. When I see his smile when he’s dozing off after a long day at the beach…I don’t know, it just can’t be wrong. He’s still being a little kid despite everything.

    Jeez I’m really rambling.

    My point pertaining to your article is yes initially it upset me that ABA seemed like nothing more than training a pet. But it certainly didn’t seem as fruitcakey or dangerous as all of the pseudo scientific crap suggested by credulous and uneducated people.

    Although his new school says it’s ABA-based I’ve never seen any treats or anything like that. I can discuss and share new studies with them and we can try different things. They aren’t married to any one methodology. Whatever shows results they will latch onto, basically just trying to get him to communicate in any way. To me this is sensible.

    • Jacks’ dad (Ariane I’m sorry I seem to be commenting a lot but maybe you’ve found “my” hot button LOL) —

      I didn’t know what was going on with my child until age 2 when he wasn’t talking, and then we were led in all sorts of directions by so called experts (anxiety, speech delay, coordination disorder etc.).

      Recently I was pulling out weeds in the garden and my (almost 5 year old) child was helping me with his favorite implements: broom and dustbin. I dug out a wooden stick that my mom put into the ground when she visited in 2009. My son asked, “what’s that?” and I said, “oh… it’s a wooden stick.” I had no idea why my mom put it in there, she put a few of them into the ground for gardening reasons beyond my comprehension.

      Then my son said, “grandma!” I just about fell over.

      When my mom visited, my son had just turned ONE. He didn’t babble or speak and appeared to have very sensitive “senses”, which we now know was part of the sensory issues. This meant my child, whom by conventional standards could be viewed as cognitively delayed, knew who had put that wooden stick there when he was only one year old, retained that bit of information the last 3 years, and now could put the correct label (word) to the knowledge.

      The psychologist who diagnosed my child (when my child was 4) told us that “he’ll be the kid who when he grows up he will tell you all these things you said about him when you thought he didn’t understand.”

      I don’t believe this is an exception but the rule with our children. They KNOW. They can TELL. Hence, by you doing what you think is “building up” your child via your father’s instinct, is to me the “sensible” thing. Working with a team that is willing to be creative and encourage communication that your child is ready for, whatever FORM of communication that is (not always verbal) sounds like the kind of positive environment that all children need to learn and thrive.

      • I LOVE that you’re jumping in Jane. I find your perspective extremely interesting and very informative. In fact I am enjoying reading ALL the comments posted. This is a terrific discussion and really appreciate how everyone is accommodating all the various opinions!

      • Jane the other day he was crying for an hour and his grandma couldn’t figure out what was wrong. He ended up grabbing her hand and indicating he wanted to go outside. She let him lead her down the street, around the corner, and he put her hand on the door of the local emergency center. When she opened the door he sat down calmly in the waiting room.
        Upon examination the doctor found that he had a bad ear infection.

        Now it’s one thing for me to say “he knows what is going on” and another to see it. The entire family was floored. He’d been to this emergency center last year. He remembered where it was and what it was for. I also was proud of him because I found this behavior very…I guess mature is the word. If he remembered the hospital he also must have remembered he would experience discomfort there (last year they needed to administer oxygen to him and give him a shot and it was a complete meltdown nightmare) But he must have known despite this he’d feel better after going there. This is very grown up behavior for any six year old regardless of difficulties.

        So I always said Jackie knows what’s happening…but to be honest I was just proceeding with this assumption on really no evidence because I thought what harm could it do. To actually see it was wonderful. It’s definitely altered the way I act in front of him

        • Jack’s Dad — this is amazing. Jackie is problem solving! I think many of our kids have photographic memories.

          When my son was 3 I was joking about visiting one of my husband’s friends who lived about 1 mile away, and my son took my hand to *took me there*. We’ve only driven there a couple of times and he knew who I meant and what I was asking and then he was able to navigate us there. Thank goodness he did not inherit my complete lack of direction.

    • Jack’s Dad – Just so you know – I love rambling comments. Rambling is good! Thanks for sharing your experience.

  13. Thanks so much for writing this – wow, what a circus you went through with Emma. It’s heartbreaking. And I’m so glad you got out of it and focused on her as a unique person and not as a broken child. Whew.

    I’m wondering if, rather than focusing on the term ABA, which apparently is currently embroiled in a semantic whirlpool of competing definitions — that the focus be on what the intention is? What is the approach to the person’s unique human dignity? What is the approach to the sensory awareness of the person? What is the approach to the individual needs and interests of the person? What choice does the person have in agreeing to or retreating from the application of the treatment? And of course, does it presume a competence that is intrinsic to the person (and not applied along with the treatment)?

    Basically, does it respect the human dignity and the unique experience of the person, or is its purpose to erase individuality in favor of majority norms? Does it consider autistic functioning a valid way of being — and does it engage the individual in learning to pass as an intentional game or a strategy — or does it treat passing and the enforced erasure of normal autistic behaviors as the penultimate achievement?

    I think if these intentions are clear, then it takes the semantic piece out of the area of contention, and focuses us on what is most important: whether the person is being approached as a valid, competent, and respect-requiring individual, or whether the person is being treated as a disease entity in need of every possible form of remediation until all signs of difference are eradicated — or at the very least, are made less obvious. If the former, then we can call it whatever we like and it will be fine.

    If the latter, no matter what name it goes by, we can identify it as repressive and inhumane.

    • This is such a wonderful comment. Thank you so much Karla for stating it so beautifully and succinctly.

    • Agreed, this IS a great comment… especially love this:

      ” whether the person is being approached as a valid, competent, and respect-requiring individual, or whether the person is being treated as a disease entity in need of every possible form of remediation until all signs of difference are eradicated — or at the very least, are made less obvious. If the former, then we can call it whatever we like and it will be fine.

      If the latter, no matter what name it goes by, we can identify it as repressive and inhumane.”

      I know this will rub some folks the wrong way, but I think it is this sentiment exactly that troubles so many of us about organizations like Autism Speaks, who seem to approach Autism through the lens of “the latter.”

      Well put, Karla 🙂

  14. It’s difficult for me to respond specifically about ABA, as we were never given the opportunity to try it. (There is just one provider in the entire Omaha/CB metro, who doesn’t accept our insurance.) Given the chance, I would have leapt at it. Maybe now it’s just as well? We’ll never know.

    The one thing I’ve always wondered, Ariane – you regret so many of the treatments you’ve put Emma through – how do you know they *haven’t* helped? I mean, LOOK at her, how amazing she is doing! Do you truly think she wouldn’t be where she is today, had you not intervened with everything you tried?

    It haunts me that we’ve done Marisa more harm than good, especially when it comes to her medications. So believe me, I know where you’re coming from. But given the chance, even now at her late age, I would still try it with her if I thought it would help.

    From what I do understand about ABA, it is critical that it is implemented properly, and it sounds like this wasn’t the case with Emma. That doesn’t mean, of course, that it hasn’t worked miracles for some kids.

    And that goes to the heart of the matter, right there. It goes back to what we were discussing awhile back on the bullying post. Parents *can’t* be wrong. To be wrong fails their child. And that’s where all these nasty debates come from – the sincere belief that you’re doing the right thing for your child, so everyone else should be, too.

    Ariane, you haven’t done one thing with Emma that I wouldn’t have tried with Risa, had we had the resources to do so. I feel terribly for you that you regret your actions. I admire you very much for *admitting* that. But, my gosh…you must’ve done something right along the way, even if it’s just being the best darn ASD mom on the planet! 😉

    • Angie, you’re right, we can’t know what Emma would have been like had we not done so many interventions and I hope I don’t sound mopey about it all, more just want to be really honest about the things we tried and honestly much of the treatments like detox foot pads etc were most certainly snake oil. We were terrified and our terror increased with each year that went by when we didn’t see her progress. Once Emma began to read and write my fears lessened a little, coupled with reading blogs written by Autistics and the Intense World Theory my perspective changed quickly.

      On a separate note, thank you for always being so thoughtful and writing such supportive comments! 😀

      • See, that’s my problem. With Risa not speaking, reading, or writing…I’m stuck in that terrifying place. That place where you know, if things don’t change, that your child will someday have to survive this world without you. Risa will be ten next month. And while reading the blogs of autistic adults has helped me, tremendously – it doesn’t change her specific circumstances.

        What angers me about the snake oil like treatments out there is that it preys upon the desperation of parents. And I’m the first to admit, that if I had the money to spend, I likely would’ve tried just about anything. As it is, she has had nothing but medication, speech, ot, pt, and all the “traditional” therapies insurance will cover, plus her special ed classroom. And none of it has done much good – at all. 😦

        I think it’s important for parents to communicate to eachother in a positive and honest way about what HAS worked for their child. If we can do this in a way without judging others, maybe some of our children might actually benefit!

        • Right. I think you would feel much less stressed if you knew you had a consistent way of communicating with Risa and if you saw that Risa was making clear, steady progress, though that can be subjective. Just curious, did you have a chance to try the Reading Kingdom program? I think you can do a week or so as a free trial to see if you like it.

          • I read over the website, and am planning on giving it a try! We’ve currently been trying sign language again. Risa will do a few signs consistently – more, please, help, etc. We’ve all been trying to learn and teach her as we go. I would not care one whit about how she wants to communicate, so long as she does it!

            I have a very good friend who’s four year old son has Barth Syndrome, which is a rare heart disorder. He had a heart transplant at 18 months old. Anyhow, he has had some major delays and still doesn’t talk. He got a Dynavox a few days ago and has really taken off with it. I know he’s not autistic, but it gives me hope. 🙂 I just desprately want Marisa to find her “voice” – wherever, or however, that may be.

            • My husband likes to semi-joke that he’d be willing to learn Arabic if that was how my son found a way to communicate with us! I think that really is the big trick with our children that can’t speak reliably… this whole talking business. I think that Portia Iverson’s Book (Strange Son) about her non-verbal son Dov, and her finding and meeting Soma Mukhopadhyay and her non-verbal son Tito, aided me quite a bit in my ability to remind myself that our son understands everything people say and that he needs to communicate and will find a way. Their story, as well as Carly Fleischman’s help me deal with anxiety about when my son will effectively and reliably communicate. These kids were not able to really effectively communicate until they were 9, 10, 11 years old. But they found a way eventually, and I feel it is highly probable that our son, as well as your Risa eventually will too 🙂
              (btw! we use the Signing Time videos and we LOVE them!)

        • Dear Angie your responses are so touching you have me in tears both times. It sounds like you have offered your child all the best. The best learning experiences, the best of everything. My son is getting older too. He is not really talking yet. He can say a few things but you actually watch him struggle to speak. He’s not using all his table manners, lol gosh no. But hey so what right. He can’t read he has been finally learning to write. But only a few things. He is wonderful though. He has a great sence of Humour and can create beautiful things. Crafts and such. His use of colour is amazing. Your daughter sounds like she may have great talents too. Your amazing for all that you do. The therapy has helped my child yes because this is the most we have ever seen him accomplish. But take note truely of the other posts. Just think what would happen to your little girl if you meet that snake oil salesman. There are people who do not mean us well. I worry everyday about what will happen when I’m gone. We need to put presure to our governments for proper care for adults and better services. It’s easy for a rich person to have no worries about adult care. But not everyone has the money. I could not afford the therapy my health care provides. I encourage all Amaricans to truely look into health care and what it means to a family. You are amazing but you shouldn’t have to go it alone. Keep moving on the path you are on your daughter is blessed to have you in her corner

          • Funmum – thank you so much for your kind words! It sounds as if our kids our much alike. Risa can say a few words, too, but they’re few and far between, and usually only understood by us.

            I don’t know that Risa has any hidden talents, but she for sure has a sense of humor. The problem we’re having lately is aggressiveness at school.

            The world is full of snake oil salesmen, sad as it is, there will always be people out there trying to cash in on the desperation of their fellow human beings. And I agree with you about putting pressure on our governments for proper care for our children as they become adults. Where to begin, huh? I don’t want to wait until my child IS an adult, I want to make sure there is something in place before that, if need be.

            The best we can do, Jack’s Dad said it best – love our kids, provide a stable, happy home, accept them for who they are, make their time with us enjoyable. Take it one day at a time, or we’re literally drive ourselves crazy!

  15. My experience of ABA is also lightyears away from yours. And I think that ABA has changed a lot over the years and can be very different from one provider to another and one state to another. Yes it did originate with Spinner studying pigeons. Yes it did used to use adverses or punishments which for the most part are no longer used and have never been used with my kids. And yes we do use very similar bit-by-bit and building block style teaching with my kids’ service dogs as we do with the kids, but I have also used tons of the principals to help my husband and I change our own habitual behaviors that we would like to change (over-eating, under-exercising, over-spending, over-stressing, etc.) We use these techniques with the kids, the dogs and ourselves because we can see that they work. If something isn’t working it gets re-examined and something else is tried. Because the data collection is there it is easy to see what works and what doesn’t. My experience with ABA has taught me that it is never that the child cannot learn, instead it is up to us to learn now to teach that particular child in the right way. What truly motivates them? What lights them up? My oldest is tube fed (she has EE and is medically complex) and not at all motivated by food. Learning how to do ABA with my kids has also taught me how to analyze my own behavior (I am now a data junkie who tracks my daily activity and sleep with a fitbit, my computer use with rescue time, my money management with mint.com, etc. etc.) to make some truly positive changes for us all. I know that people get offended at the idea of using dog training techniques to teach skills to children, but we are animals as well and are all often unaware of exactly what triggers certain behaviors and where our own barriers to learning new things exist. So I completely disagree that this is not something that we would do to typical children or adults. At least no the way that I have experienced ABA. I do it with myself. My children are never restrained, isolated, punished or shamed. The grad students who provide their one-on-one in-home hours love and adore them and my girls feel the same way about them. The ABA that my kids do is focused mainly on skill acquisition, skills that they need in order to have some measure of independence in life, and the learning to learn skills that will help them to more fully participate in school. I do understand what you are saying about accepting rather than discriminating against, and I do accept my kids. I accept that they will always face challenges, but I do ABA in the hopes that the skills they acquire will improve their quality of life in terms of the long term outcomes. The difference in life quality between someone who can toilet independently and an adult who must wear diapers and needs assistance is significant to me. Though of course if we are lucky enough old age can put any of us in that same state of dependence. And a car accident or even just a good knock to the head can render any of us speechless, disabled, dependent. All the same, as a survivor of childhood sexual abuse myself I want to give my girls all the strength, knowledge, skills and tools that I can to protect themselves in case there is ever a time that I can’t and build happy, exciting, and interesting lives, whatever those lives may look like from the outside.

    I respect you for writing this post and am glad that you did. I have even thought about asking you why you abandoned ABA. If I had your experience of my child and myself being blamed instead of the therapist recognizing that they were not adequately addressing Emma’s needs and unique learning style, I probably would have left too.

    One last note, I do absolutely pay through the nose for my kids’ program. Our insurance has an autism exclusion and we live in a rural town that has little access. At first we were paying 100% private pay but little by little figured out how to put together a program through the Department of Developmental Disabilities and the Arizona Long Term Care Services to at least get the one-on-one hours paid for through habilitation, but we still pay our BCBA privately. And fly her in every other month for a week from another state. Her PO’s with each of my kids’ separate schools helps with the cost. I’m hoping our work on our program will make it easier for other to access in the future. And I’m hoping our BCBA will move back to our town!

    • Glad to hear some people in the US are getting great service and are satisfied. I agree with you. I think the services have changed and people have moved on more with the new knowledge of the times. I wonder though if others are still meeting up with the older approaches. We need to work harder to get rid of the old stuff that hasn’t worked and keep the great stuff like data collection and positive reinforcements. My school uses more than just food too. They are very innovative. They also help us keep our focus on our goals. It’s also helped our family keep our focus on us and what we hope to achieve for our boys. Love everything you described.

    • Jen best of luck with your program. It does sound very different from what Emma went through. Really appreciate you’re sharing your experiences.

  16. I have lived in 2 separate provinces and it isn’t remotely like how it has been described. Both places beong major cities. I help other parents naviagte the lack of information, forms, IEP expectations and the beaurcacy. I have stories that would curl your toes of a school he attended in Guelph, On .

    I enjoyed reading the blog and perspective.

    • Hi ya I just wanted to tell you thank you for being one of the people who do help families navigate the red tape in our system in Canada. I’ve had a hard time fighting the good fight for my two boys. It takes a take no prisoners attitude sometimes. The wait lists are long. Our schools are hit and miss when it comes to understanding and services. Are budgets are getting pared down to nothing. Without good people helping me in IEP meetings I would not have had an easy time. Hey and just think I live in a part of the country that has many services and I’ve had struggles. Just think what it’s like if you don’t. That’s where good people like you come in. Helping and propping up families so we don’t fall apart. I have been blessed but many are not. We need to keep pressing our provincial governments to do more. Find the programs that are working and implement them coast to coast. We can do better and it’s people like you who help make it happen.

  17. I have to respectfully disagree that ALL ABA can only work by trying to cure or remove the autism one has. This is my field, although I’m a BCBA. I would never view children this way or treat them in such a manner that is so rigid. I’m so sorry you had a bad experience, and unfortunately there are people in the field with power trips and control issues. I taught these children for quite some time before this profession and one reason I got into it was to help and show families that this can be helpful. It takes cooperation with everyone involved and even the professional to make changes and sometimes admit what they are doing isn’t working so everyone can decide where to go from there and what’s appropriate for the child. It takes flexibility. Just thought you should know there are some good ones out there, so please don’t clump all of us into such a negative category.

  18. In a way we were blessed, back in the beginning (soundy very biblical, aren’t I) ABA was not well known in Australia. The first time I heard of ABA was at a friend’s 40th when Boy 1 was only 6. It was a murmered conversation and not detailed. I thought it sounded like re-inforcing the life skills any child living in the real world needed. I was so innocent then.
    Our son is now nearly 15, and by following our gut instincts, our path, he is doing well. Yes, we used therapy: speech, occupational, social. But first and foremost, we remembered exactly what he is. A child. Today he is happy, unique, confident and did I mention HAPPY? I do not wish him cured, I wish im to be all he wants to be.
    And am grateful I did not have to make a choice involving ABA to supposedly result in that.

  19. Just listening… 🙂 No first hand knowledge of ABA or any other therapy referred to by letters so this has all be very interesting. Makes my head kinda spinny, but interesting none-the-less.

  20. Oh wait, OOPS! Ted did OT and PT, those are letters!!! 🙂

  21. Hello. I’m the mum of a two year old who has been recently diagnosed. I share some of these concerns about ABA, I also worry I’d fall into a pit of stress trying to organise it all. what other early interventions have people found helpful? My son is possibly on the high functioning end, although I’m not sure anyone really knows at two. thank you!

    • We finally trained with the late Stanley Greenspan in his DIR/floortime. I think it was certainly better, gentler and kinder than ABA. My close friend Ibby has a blog called Tiny Grace Notes AKA Ask an Autistic, the link to her blog is on my blog roll, if it were me just starting out, I would write her and ask her thoughts as she is an educator of educators and is very knowledgable.

    • Ms Jessie, I haven’t stopped thinking about your question here. Can I forward this to my friend Ib? She is an Autistic adult who educates, educators. She also has a blog as I mentioned. She is a wealth of knowledge and has terrific suggestions. If you would allow me, I can cut and paste your question.

  22. Wonderful! Thanks for sharing this.
    The Son-Rise Program
    http://www.recoveringkids.com

  23. Dear Mallory, I am trying to parse your comment so that it has something to do with what Ariane wrote, but it is difficult for me to do it. Perhaps my eyes are putting typos in the first and last sentences? But for me, she wrote about the ethics of a ABA per se, not a personal group of usses or thems who may like doing it. There really is a world of difference in the nature of those two concepts. Thanks, Ib

    • Ariane wrote that she disagrees with the basic tenants of ABA because they are based on what she and some other neurodiversity advocates like to call a “deficit model.” The implication is that- at its CORE- ALL ABA tries to “change” an autistic person, and cannot be “accepting”. It’s dishonest to dismiss Mallory’s comment as off topic. She is saying she PRACTICES ABA and her goal in treatment is not to rid her clients of autism or treat them as deficient people. It’s pretty relevant to this pretty ignorant criticism of ABA.

      • Sunshine, while I understand you disagree with my view and you dislike what Ibby wrote in reply to Mallory, your saying “It’s pretty relevant to this pretty ignorant criticism of ABA” does not bolster your argument. Implying that someone (me) is ignorant simply because you do not agree with my views does nothing to further the discussion or convince anyone of anything other than that you are angry and dislike what you’ve read.

  24. It’s very interesting to read of people’s different experiences! Speaking for myself and my son, ABA has changed his life immeasurably. And 100pc for the better. Acceptance is all well and good, and I certainly accept my son’s condition, and feel a burning anger about the snake oil salesmen out there who prey on the desperation of parents in promising a cure. My son will always be autistic and we adore him for who he is and what he brings to our whole family.

    But before ABA he was so very unhappy. He is not high functioning, and spent his days completely lost and unable to process the world around him and it was heartbreaking to see. He understood nothing that was said to him, could not communicate at all except by dragging you to what he wanted, and he didn’t have a clue how to play with toys or playground equipment. He would do little else but drop building blocks behind our television in between anguished meltdowns.

    Now 3 years into ABA he is blissfully happy. Pretty much every minute of every day. He has the tools to communicate, to interact, to play and to learn. And without ABA none of these would have happened. He also has the dignity of being toilet trained and being able to use cutlery to eat, to use just 2 examples.

    For us, TEACCH methodology would have been the cruellest thing we ever could have inflicted on him. As practised by those we met it would have been little more than babysitting for my son, with incredibly low expectations of his ability and desire to learn or communicate (we were told there was no need to try and teach him to talk, and was it such s big deal if an autistic child remained in nappies?) What they would have been doing was effectively institutionalising him, as he would in no way be able to function in the mainstream world, and when we were unable to care for him, (as he grew bigger and more frustrated) he would have no option but to be cared for away from society and probably drugged to keep him docile.

    I believe the low expectations they have of children like my son are appalling. My son, through love and fun and praise and rewards was taught the skills that have enabled him to access the world around him. He skips to his ABA school every day to meet the teachers who bombard him with fun activities especially designed to match his interests, and he barely notices he is learning! There is no attempt to stop any stimming that is not aggressive or self-imjurious, and certainly no talk of cure. Essentially what they do is break down tasks and skills into small parts and teach the stages through fun activities. That’s it. Nothing sinister or cruel whatsoever.

    My NT children learn automatically as they were born with the ability to imitate and communicate. My son was not going to be written off because he had to learn in a different way! I defy anyone on God’s green earth to see my son speaking, playing with his toys and his computer, scooting like a demon, leaping around the playground (where once he used to lie on the floor and drop stones on the ground to watch them bounce) and most importantly, see the grin on his face throughout, and tell me that we have inflicted some tortuous punishment on our son.

    Can anyone really tell me HE (not us) would have been happier in nappies, unable to talk or understand, play or interact? He is patently delighted with all his new skills, and they have enhanced his life beyond measure.

    • I completely agree! My kids are so much happier being able to communicate more clearly and do more things for themselves. I love the look of pride on each of their faces when they are able to do something for themselves that they used to need me to do all the time. Just the fact that they have almost all of their toileting routine down and can do that by themselves except for needing a bit of help to make sure they are all clean, and that they are able to do the whole hand washing routine by themselves, make them so happy and me so happy too! Our ABA program is really focused on the kids acquiring skills that will help them in life and they love it. The main times that we have focused on behaviors that we want changed are just the SIBs (self injurious behaviors) which my oldest daughter did early on. The result of us examining those behaviors convinced both me and our BCBA that they were not just classic autistic behaviors as we were told by other doctors but her way of expressing distress and pain. At our insistence she eventually had endoscopies and biopsies that turned up a diagnosis of an extremely painful eosinophilic disorder that was doing a great deal of internal damage. Once her feeding tube was installed and she recovered from the surgery all of her SIBs disappeared and have only resurfaced when she is in pain or under a great deal of stress and anxiety. However now she is able to say ‘ow’ and ‘hurt’ and sometimes doesn’t need to hit her head at all to let us know. We might not have gotten to that diagnosis for years had we not been analyzing the behaviors so carefully and recognized them as her attempts to really communicate. Of course this may be because our BCBA completely rocks and I’m sure that with all professions some professionals rock in each industry more than others.

      I’d also like to add that both with our kids and with the handling of the service dogs, if things are not going well, if progress stalls or something else goes wrong, we always sit down and try to examine what we are doing that might be confusing, mis-communicating our expectations or intentions, or how we might be reinforcing the wrong behaviors/responses. If things aren’t working we always look to ourselves, not the kids and change our behavior to help the kids better understand what we are trying to help them learn. They are who they are and it’s our job to reach them in a way that they can understand and respond to.

      This may be because we are in a rural area without any ABA companies to provide full service schooling and therapy, but I had our BCBA train me in DTT first before anyone else did it with her, and I got trained in PRT at the Autism Center in Phx as well. I tried to do most of the hours with her myself until the needs of our baby and my own exhaustion with trying to do everything myself got overwhelming and I had to find help. I never ask any of our grad students/tutors to do things with our kids that I haven’t/wouldn’t/aren’t doing with them as well. And my husband and I were trained as service dog handlers before we trained the tutors and school aides. I always want to make sure that I know at least as much about what is going on with the kids as the Hab workers/tutors/therapists/teachers etc.

      Sorry I’m being so long winded. I could probably go on all day about how much my kids have gotten from ABA. But I’ll stop now. Thanks.

    • I’m hoping my son will walk away with some of the skills you talk about. He has a good many skills but not all the key ones. As he gets older he’s getting counted out of things he does enjoy. He’s more venerable. This is hard. I learned that ABA was how he learned because we had so much trouble with the other methods. His speech therapy wasn’t working out but he showed understanding in many areas. We could see the potential. When we discovered he learned this way. I finally realized how different every child is on the spectrum. I have two kids. What helped one kid learn did not help my son. I don’t think ABA is for everyone but it is for some of us. Too often we are judged for our decisions because it’s not what another mother would do. Just like the spectrum is broad our approach to learning must be broad. No one should judge a mother for her choice to choose ABA therapy. If you have felt judged ever then those who do it are wrong. If delivered with love and care it can be awesome. I love my son and accept him as is. Just as I think you do. Just as I think others who do not choose ABA do. But I think if their kids learn differently then mine then ABA might not be a good choice for them. Here’s to all of us moms out there doing our best to teach our kids.

  25. I don’t judge all behavioural programs based on ABA. ABA is a very specific kind. I am pro behavioural intervention. I am anti- intense intervention because some kids are so overprogrammed they never get any down time at all.

    A whole child approach needs to be taken and what you want the outcome to be of whatever you are doing needs to be clear. The strengths need to be recognized and nutured and care needs to be taken not to convey along the way that being autistic is something so horrible that you need as much therapy as a full time job to “cure” you.

    The sense of urgency which drove a lot of those early intense intervention models has since been largely discredited by the research. There is window that’s going to slam shut on a certain birthday. Heck most of my own progress came well outside of that window. Had I been overwhelmed with the sort of interventions some kids get these days I doubt I would have ever come out from under the tables.

    I have a degree in psychology. I took every behavioural course there was as well as developmental ones. My objections to ABA should be thought to be objections to that very specific brand of behavioural intervention although I also have ethical issues with the lack of quality control around who can call themselves that etc… My friends who ultimately had the most success with their kids did realize (some of them with prompting) that much of what they were seeking to extinguish was useful.

    With any difference there are certain aspects that are always pathologized. I had to correct both my rabbi and my psychiatrist in the past few weeks when they wanted to see something positive and core to me as being a symptom. That I would be healthier somehow if I said things with conviction I don’t believe etc… When you are a child and say your parent is panicked and overwhelmed by the diagnosis and the constant sounding of the drum about how time is running out no one can do that for you.

    The autistic person’s personhood has to be respected. Some people read my dog’s blog where I expressed concern that one of the things that is fundamental to my dog’s personality should need to be corrected to get him certified as an assistance dog. It’s a little distressing that that much thought isn’t always given to how we approach some human children.

    The people emerging into adulthood now who were subject to overly intense interventions are coming into adulthood with a similar shame load about being autistic. Optimistically when I was much younger I thought the computer would change that a lot. I thought that generation would be better off than ours was.

    I remember one child I visited people had been so focused on getting speech out of her no one realized she had a basic grasp of phoenics. Another who on approaching me about a mutual interest was told not to because she was perseverating. A boy who on meeting me burst into tears having thought autism was fatal because he never met an adult and everyone seemed so intensely concerned about it etc…

    If a diagnosis is very recent, unfortunately the parent is in a position of having to make therapy decisions while still dealing with their own feelings about what this means. I used to tell people who would arrive on IRC in a panic the day or week they got the diagnosis that nothing had changed beyond the label. A label can be useful but the child is unchanged by it.

    I don’t know how to encourage people to actually get down and try to see what their kid is finding so interesting before they

    Treating autism is an industry of it’s own and some of the people in that industry are selling shoddy wares. Not all but far too many. Not every child is fortunate enough to have a parent who innately questions what people are doing to their kid and whether it is right and moral.

    How is anyone supposed to maintain a sense of self-esteem when the most visible organization in North America has one main goal. The development of a prenatal test to prevent Gareethness and Emmaness from happening. They raise obscene amounts of money and every blooming tv show pays lip service to them but only 4 percent of all of that goes into any services for those with autism. Much of it goes into salaries and their dear research product. It feels like the 40s all over again as far as eugenic models. At it’s worse the very rigid approaches are similar to eugenics only you leave a living victim. A robot stripped of much of what made them who they were. Usually a deeply unhappy one at that.

    There is no doubt intervention and treatment is needed. I still could use more than I get by a long shot at my ripe old age but is it so impossible to help the things that could use help while respecting someone’s right to be who they are?

    • Gareeth I like everything I read in your comment, and given my “tenure” (a year anniversary, actually) I can attest to the “oh my god you need to do something NOW as in YES NOW HE IS RUNNING OUT OF TIME THE WINDOW IS SHUTTING!” and I’m thinking holy cow I have wasted my kid 2 years of precious early intervention window of opportunity oh no I can’t sleep for the next 12 months.

      If you don’t mind, I’d love to hear your thoughts on how I as a parent can approach the education system and what is a constructive way to think about goals and what my child “should be able to do by grade X”. Because another famous battle parents get to fight is with our beloved school districts, and of course school is another arena for “intervention and what this looks like” including segregation “for the students’ own benefit, of course.” Parents like me are urged by advocates and attorneys (and regional centers in states that have RCs) to seek ABA for our children through the school district.

      If this is off topic and I don’t want to detract from the core ABA debate, I’d very much appreciate if you can email me and we take this off-line!

  26. Hi Everyone, I haven’t had time to read each and every single comment left here yet, but will and in the meantime, just wanted to thank all of you for your terrific comments and for being kind throughout this discussion. It’s terrific to have so many diverging views expressed in a respectful way.

  27. Why isn’t ABA used on neurotypical children? Good question. I’d say that some parents do use modern forms of ABA on their neurotypical children. ABA for NT kids is called “hothousing” or “helicopter parenting,” and it’s widely criticized. The most overbearing of hothousing helicopter parents aren’t nearly as intense as the average ABA therapist or parent. So, yes, it’s used, but in a milder form, and even this milder form is widely criticized. (Some parents use older forms of ABA on their NT children, as well—these parents are generally called “abusive.”)

    Why is that? Partly, it’s because there’s a somewhat accepted cultural consensus that (neurotypical) kids need, and benefit from, unstructured play and time to “be kids” or “be themselves.” In autistic children, “being themselves” is a disordered, maladaptive behavior that must be suppressed. But in neurotypical children, unstructured play is considered a necessary balance to structured learning.

    So NT kids get free time in addition to structured learning, but what about their structured learning time? Why isn’t that ABA-based? Schools use forms of ABA on their neurotypical students—but it’s not the only means of instruction. This is because, generally, parents and teachers want more for their students than behavioral education offers. They want their children to learn to reason, analyze, interpret, think critically, and develop good judgment. None of these skills are included, or even viewed as desirable outcomes, in ABA. Put bluntly, ABA is the lowest form of education. There’s a reason it’s sometimes compared to dog training, and a reason it’s used for dogs in the first place: dogs don’t have higher-order reasoning. Reinforcements and repetitions are all they can really understand, aside from their natural instincts. If you reward a dog for bringing in the newspaper and punish her for peeing on the rug, and do repetitive training exercises in which these things are reinforced, she will learn to bring in the newspaper and refrain from peeing on the rug. But she won’t know why. She won’t understand that her human uses the ink on that paper for communication, or that the rug was expensive and is important to her human because of what he exchanged for it. She can’t. She’s a dog.

    But most parents of neurotypical humans do want their children to understand these things. They want their children to understand the why and the how. They want their children to access higher-order reasoning. And ABA doesn’t provide that.

    ABA is a form of education designed with the premise of students with no inner life. No capacity for higher-order reasoning, critical thought, or analysis. No personality, no independent desires, no rationality.

  28. After nearly 20 years in the banking industry I left my job to become a full time home ABA therapist. I have been a therapist for 17 years this month. I can appreciate all the comments I’ve read and wish I had answers for all of you. I truely believe in what I do. I believe it helps each of “my kids” in different ways. The programs that are set up by the case manager that oversees my work are put together after a thorough discussion with the parents. The parents play a huge part in how the program is designed. That was not really the case 17 years ago but, at least in my case, I have always tried to use the interests and likes of “my kids” as part of the motivation to learn. I think we have come a long way. When I am interviewed by a new family I always tell them that I believe this therapy has to be fun. It has to be fun for their child and for me.

    ABA has often ben critcized for turning out “robots”. I believe that the function of the “robotic” sounding talk in the beginning is to cut out all of the unnecesary filler words that get all jumbled up in the childs head. That robotic talk should be stopped as soon as the child starts to “get” what’s going on. You bring it back when you need it. Like during a melt down or to avoid a melt down. Hearing “You can have a piece of candy when you finish your sandwich.” is just too much especially if you’re upset. Hearing, “First sandwich then candy, yes” gets the point across without all those confusing words.

    I know I’ve rambled a little, I’m sorry, but I’m passionate about what I do. I am convinced that probably not all, but the majority of autistics could be helped in some way by ABA. ABA doesn’t have to be strict and rigid. I believe I’ve had the successes I’ve had because I really want “my kids” to want me to come back. I want them to be excited about learning and I want more than anything for them to be proud of themselves

  29. Some of the negative reinforcements associated with ABA, has shed a bad light on the the therapy, in the past but the positive reinforcements associated with ABA are not targeted just at deficits but positive behavior as well. ABA based interventions are widely used through out society in a wide ranging demographic and behaviors. It is not a behavioral science limited to those that might be described as having perceived impairments. Many people off the spectrum benefit from ABA interventions:

    from Wiki:

    http://en.wikipedia.org/wiki/Applied_behavior_analysis

    “ABA-based interventions are best known for treating people with developmental disabilities, most notably autism spectrum disorders.[2] However, applied behavior analysis contributes to a full range of areas including: AIDS prevention,[3] conservation of natural resources,[4] education,[5] gerontology,[6] health and exercise,[7] industrial safety,[8] language acquisition,[9] littering,[10] medical procedures,[11] parenting,[12] seatbelt use,[13] severe mental disorders,[14] sports,[15] and zoo management and care of animals.[16]”

  30. I apply to TWOTW; TWOTS; O; C; and many more of my personal specialties. I’ve studied countless behavioural techniques, and could demonstrate successes in all. I don’t, and won’t. What is the ends.

    I don’t know if I ever told the ‘grasping of the ball’ story, so, here it is:

    A particular year-end goal for a student was to be able ‘to grasp.’ This noble goal was dreamed up by much more important people than myself, I was placed in the position to ‘make it happen.’ (To be continued . . . As I need to charge the iPad)

  31. I have some issues with the ABA my son is getting – but only because he seems bored by it. To be honest, we’ve had a pretty fine experience. There was one instance where the therapist tried to get him to stop a repetitive behavior that I could see was comforting him, and I told HER to stop. They have been very good about listening to the family and respecting him as an autistic person. But he only gets it once a week, for two hours, in our house, so I’m able to observe it all. It has helped tremendously in getting him to better understand social back and forth dialogue, turn taking, etc. And in our experience, these are therapies that I can use with his younger, NT brother who is also just beginning to learn social skills.

    My main reason for commenting though, is to thank you for acknowledging that this is just one family’s experience. Not enough people do that.

    • Thanks Christine, this blog is most definitely about my personal experiences. I try hard to not come across as preachy or an expert, though I know I don’t always get that balance right!

  32. Jane, I would email you if I could work out how.

    I’m in Canada so schools work differently as far as the extent they wind up being involved in interventions here. For the most part based not just on my experience in the school system but even more during my years doing respite care (I wound up in charge of the education of the kids I worked with when I managed to accomplish some things the school had deemed impossible I don’t really believe in all those they should be able to to such and such by such and such a time. Especially not for something like autism where fairly often it’s not entirely evident what the child can do and assumptions get made.

    I feel for parents when I see how hard some have to fight to get things that seem a bit like no brainers for their kids and while I have tremendous admiration for those waging those fights I wish you didn’t have to. It seems like with everything already on your plates any system should be setting out to make things easier not this insane adversarial system where getting most anything no matter how needed winds up being a fight. That’s very general though.

    • Gareeth: I didn’t realize you can’t see emails from comments, if you click on my name it takes you to my blog and then on the right hand side, I just put up a link to “email me”!

      I think people forget (or don’t realize) that the so called developmental milestones are a statistical phenomenon and therefore composes of a “band” of data from many many children growing in many many different households. Outliers aren’t accounted for but if there are enough outliers I suppose this will alter “the band” pattern (maybe the bell curve shape will change a bit). Yet we make decisions based on this bell curve.

      This: “I don’t really believe in all those they should be able to to such and such by such and such a time. Especially not for something like autism where fairly often it’s not entirely evident what the child can do and assumptions get made.”

      — I think this constitutes the majority of issues I face as a parent, whether it is having to convince school districts that our children can learn only they learn in different ways and at different paces and they are not to be written off as lost causes, or that our children who appears to be able to learn still need accommodations (i.e. gifted students with sensory issues are still disabled by their sensory issues but these students are at risk for losing their right to be protected for accommodating their sensory issues), then there is this sense of having to race against time, which I think has caused the most harm in families.

  33. Wow! I have been working on a post on a topic very similar to this, which I might publish in the next week. But I edited out the places where I mentioned ABA directly because I didn’t want to alienate any readers because so many people really believe in it. But ABA seems like it is all based on the premise that neurotypical is always the most desirable way to be, and the naive assumption that if a kid learns to act neurotypical then their autism has been cured. They have it all backwards. It’s like they think that behavior controls neurology and if they can change the behavior then the neurology will change too. No, no, no! It’s the other way around. Neurology controls behavior.

    • So in some cases, like addiction for example, the repetitive behavior actually does cause the brain to change, which is why addiction is such a tough thing to tackle. But in the context of learning such as Emma was given during her ABA years where she was shown a flashcard of a green shirt, she memorized that card, could tell us that specific card showed a green shirt, but if I then pulled out a green t-shirt from her drawer and asked what it was, she could not tell me, in those instances, no, her neurology was certainly not going to change. The problem was not with her memory or her ability to memorize large amounts of information. What was much more troublesome was how to get her to generalize what she was being taught. Another example of this was when her therapists insisted she learn her full name and street address. There’s nothing wrong with this, in fact it’s a good idea, but the minute she had “learned” it according to their discrete trials she promptly forgot because this was not information she was applying to her daily life. The information was meaningless. That’s one of many of my objections with ABA. Neurotypicals have an idea of what they consider to be important, such as the Wheels on the bus. Therapists spent several years teaching Emma this song. Why? I have no idea. To this day, I do not know why it was considered so important.

      • So here is the difference (as far as I understand it) between autism and simply changing behavior, as in your example of addiction. People can learn to use different neurological pathways by changing their behavior or training themselves to do certain things. Stroke patients regain control of parts of their bodies by learning to use neurological pathways for a different purpose. But it doesn’t work that way with autism, because autism isn’t just a matter of kids using the wrong neurological pathways for the wrong purposes. Autistic people actually have different neurological pathways to work with. They will never be able to teach themselves to use neurological pathways that they don’t even have. So when the ABA therapists were trying to get Emma to associate a picture of a green shirt with the concept of green in her mind, Emma didn’t respond in the expected way. Of course not. She’s using an autistic brain, but they’re trying to teach her how to use it like a neurotypical brain. She has to learn to use her brain, and her own neurological makeup, in her own ways. No one can teach her that. While neurotypical kids might associate a picture of a green shirt with the concept of green in their minds, Emma makes no such connection. Instead, Emma associates the specific flash card with the word green, which is probably exactly what she was told to do in the first place.

  34. http://www.braintraining101.com/how-aba-therapy-rewires-the-brain/

    The brain is constantly rewired through the course of life through the process of neuroplasticity. Repetition of behavior toward the goal of positive reward, particularly intermittent reward, the most powerful reward available to human beings, results in learning new behavior as well as strengthening or weakening neural connections in the brain as a response to the new behavior and learning.

    The ability to remember things through short term memory is an important ability and the way most people work their way through school learning tons of information that would cause more problems for most than benefits if one were able to remember every detail of everything that is learned on a long term basis. However, the development of the ability to learn things on a short term basis through short term memory, must be practiced as any other skill, if those neural connections are to be strengthened. Obviously, the things that are important in our day to day lives are the things we are going to be more likely to continue to remember on a long term basis.

    The success in the ABA therapy in the examples of the school bus song and name and address, is not in long term memory it is in short term memory. As the name and address become more important in daily life per your daughter’s perspective, it may become easier for your daughter to remember those things on a long term basis; this is the same general way it works for anyone on or off the spectrum. But, it doesn’t make the development of short term memory skills for language any less important or the ABA therapy, as it appears that it has been effective in it’s design to strengthen the ability for short term memory.

    ABA therapy is designed in many different ways, but it is basically a way of enhancing rewards to strengthen behaviors, and resulting cognitive function as part of the general lifelong process of neuroplasticity. It doesn’t benefit everyone equally, because not everyone responds in an equal manner to the rewards designed to strengthen the behavior, in part for some, because of inherent differences in biology.

    The reality of life for most is they must learn things they are not necessarily interested in much of the time to get through life; this makes the development of short term term learning skills through ABA therapy as important as it is, regardless of what it is a child is receiving therapy to learn. The school bus song may be meaningless in the long run in developing short term memory skills, but the full name and address will obviously eventually be very important, if practiced enough, and perceived as important enough, to where it can be retained in long term memory.

    The process of neuroplasticity, behavior and strengthening neural connections can’t be emphasized enough in modern culture, as what children are exposed to in the way of TV, video games, the internet, and the move away from face to face communication, is effectively resulting in a different brain and different abilities, where novel neural connections are being made and strengthened and the ones from cultures of the past, for example social communication skills in face to face interaction, are not being made like they once were for some, when that type of activity was more the focus of life. This is counterproductive for those that are born with inherent neurocognitive weaknesses in these areas, per their ability to adapt through the process of neuroplasticity. ABA puts the focus back into these areas for some, and has been proven effective for subgroups of individuals on the spectrum.

    • The neuroplasticity of the brain isn’t in question so much as why attempt to re-wire. Lets question motives to re-wire. Most say behaviours as a reason. I don’t believe in the word “behaviour”. I believe in cause and effect. I know. Quite simple.

      I say, let’s learn how to communicate.

      • My understanding is the motivation in early intervention and ABA, is to enhance learning potential to wire the brain, not to re-wire it. The only understood inherent abilities that humans possess toward the goal of learning abstract concepts is what underlies verbal communication; everything else is learned on the shoulders of collective intelligence, that preceded the child’s entrance into the world.

        Unfortunately when the inherent biological elements that control verbal communication are compromised, it makes it harder to learn abstract verbal concepts. ABA is an accommodation for those individuals to learn. Society is no more or less than a result of collective intelligence, however it would have been impossible had humans not developed the ability for complex verbal communication, and hands for writing.

        The difficulties a non-verbal child faces in learning to interact with the environment they are born into, in general, is much different than those that possess a high degree of verbal abilities.

        The accommodations that society provides, in the way of ABA, and communication devices provide some the eventual opportunity for basic self care. That’s my understanding behind the motivation for the development of therapies, and accommodations, however the entire spectrum is a huge population estimated at 2 million currently, that run the gamut from never being able to speak or use accommodation devices to communicate, to College English Professors, and musings of the fit of diagnostic criteria for Billionaires and Presidential Candidates potentially somewhere on a broader autism phenotype, above and beyond the 2 million.

        It’s not surprising that everyone does not see the value in ABA or that it is of little to no use for some on the spectrum as a reliable and effective tool for early intervention in learning. The specific tool of ABA for early intervention of children on the spectrum, is evidenced by government studies as beneficial for a small group on the spectrum, but far from a reliable or effective one for the entire population of children diagnosed on the spectrum.

        Research into the effectiveness of therapies currently existing associated with Autism spectrum disorders is inadequate. That’s a big part of the issue, as ABA has been here 50 years, and has the lead in research documenting it’s effectiveness for a minority of those on the spectrum, per early intervention. Research funded for effectiveness is as important as research funded for development of therapies. The dollars though, are limited, and insurance companies, in part rely on statistics from government studies to determine what therapies and treatments they will cover. This is currently keeping ABA in the spotlight, until future research is accomplished providing enough evidence for the effectiveness and reliability of other therapies, that are reported as working better than ABA for some others, on the spectrum.

  35. I’m curious Katie, are you a neurologist? Do you have a child who is autistic?

    • Hi Ariane, no I’m not a neurologist; I was a non-verbal child on the spectrum not identified with a diagnosis until midlife, and did have a child that passed away as a result of a complication of a co-morbid associated with the spectrum.

      I can personally attest to the power of neuroplasticity, through all it’s forms positive and negative, as I went from a book worm with three college degrees and little verbal ability, to a requirement in a job were I had to adapt to dealing with thousands of people in the public, where at first I saw little potential for adaptation. My motivation/reward was basic survival, however that’s pretty much been what has motivated human beings through the course of human evolution.

      In college in my book worm days, I did receive degrees in health science, anthropology, and social sciences interdisciplinary. I’m no longer interacting with thousands of people, so I find myself back in the role of book worm, on the internet.:).

      All in all, the people were much more fulfilling than information and knowledge.

      I am personally convinced that most of the 1 in 88 statistic identified by the government in classes for the developmentally disabled have always been here in society, as well as the other two thirds identified so far in South Korea, previously undiagnosed.

      I am also convinced that it is the byproducts of culture, that work together with the inherent biological characteristics among those that are not as socially motivated that make an autism phenotype of autistic like behaviors, into what is now categorized in many individuals in the other two thirds as a disorder, in South Korea, and likely soon to be identified as such in the US, through another population wide scan.

      Among that other two-thirds the strongest shared biological component appears to be, in my opinion, the androgynous characteristics inherent to subgroups of all social animals, as a natural biological response to adapting to subsistence pressures and social stress in general. With a common element of a lower propensity towards reproduction, coming into the world, so they find themselves in supporting social roles, also seen in other social animals with similar biological characteristics. This was my opinion 30 years ago before there were any labels like Asperger’s Syndrome to identify it. Research is finally supporting the anecdotal observation.

      I strongly believe cultural byproducts are making it more difficult for some people among the other two-thirds as well as some in the currently diagnosed 1 in 88, to find social roles in life. The difficulties the two thirds are facing is most often heard on the internet, ironically at least in part for some, one of the cultural byproducts that may be making it harder for some to adapt in the real world, simply because people become what they feed their minds through the process of neuroplasticity. A potential result: a disorder instead of a broader phenotype for some, and potentially greater numbers for others in the future.

      I am also convinced that the underlying factors for some others are almost completely different, and more often not personally voiced on the internet. Gay rights and Autistic Rights, likely have biologically common elements, for those that are able to voice their unique challenges in survival. At least, those voices heard on the internet. It’s getting harder to dismiss as an anecdotal observation, as the research is now starting to confirm it.

      • Hi Katie, thank you for being so open with your history, really appreciate it. I’m so sorry to hear about your child, Katie.

        The thing that bothers me more than anything else, and it isn’t just regarding ABA, quite honestly, it’s about so many of the available methodologies used in “treating” autism is they ignore how these various methods affect a child emotionally. This is the piece that I find more problematic than anything else. The Intense World Theory for Autism by Kamila and Henry Markram was the single most revelatory “theory” I’d ever heard and the only one in which I actually recognized my daughter. She feels intensely. She senses vibes, picks up on moods, is deeply, deeply affected by a tone of voice. She is crushed and I believe overwhelmed by other people’s emotions. For Emma, ABA (the kind she was given) was deadly. I see that now. But I didn’t then. And it haunts me. I will never forget the trauma it caused.

        • Ariane, I agree ABA is not the right course of therapy for every child; as I detailed above it is limited in it’s effectiveness varying depending on the individual, and only shown through research as reliably effective among a small subgroup of individuals on the spectrum.

          I too could relate to the Markram’s theory, per the intense emotions and intense world, and others have related to it in online autism communities, however those that have the opposite issue of being hypo instead of hyper sensitive to their emotional and sensory environments, do not relate to it as well.

          Hypersensitivity is also common among those with introverted personality traits; research provides evidence that in general those with introverted personality traits are more sensitive to the effects of dopamine, per the pleasure centers of the brain. It’s also interesting that similar research has found similar traits across different species of animal populations with the propensity to sitting as opposed to roving, consistently at about 20% across species, including humans.

          The Markram’s are proposing the development of a drug to regulate the hypersensitivity of some individuals to their environment. Their suggestion to limit exposure to environmental stimulation like Television, is something that can be done now, and already becoming standard medical advice for children under the age of 2.

          I don’t think it is any accident that community wide scans of rates of autism spectrum disorders indicate a statistic of 1 in 271 in Amish Country, as opposed to 1 in 38 in South Korea. The difference in having electricity and not having electricity pretty much solves the issue the Markram’s are concerned about regarding too much environmental stimuli, whereas South Korea is a world leader for those constantly connected to electronic media stimulus. The most significant factor may be the Amish way of life as continued focused on face to face interaction standing still in the face of “progress” defined in the larger Culture in the US.

          • Hi Katie, do you have a link you could send me regarding the Amish study (I’ve seen the Korean study) and anything about the Markrams proposed drug? When I spoke with both of them this past August in Jerusalem they indicated that any drugs were a shot in the dark at this point, though Henry did mention that once his simulated “blue brain” project was finished doctors would be much better equipped to develop drugs targeting those specific areas, is that what you’re referring to, or is there something else that I may have missed?
            The other thing I wanted to ask you is – for those children, like mine, who are hyper sensitive (and I am too!) have you come across anything that has shown to be helpful?

            • Hi Ariane, here is the link to the Amish Prevalence study:
              https://imfar.confex.com/imfar/2010/webprogram/Paper7336.html
              Here is the link to the Markram interview at wrong planet where they address emerging treatments, including drugs to damper down hypersensitivities.
              http://www.wrongplanet.net/article419.html

              I agree with the Markram’s advice to limit a child’s exposure to highly stimulating elements in the environment such as electronic media devices. It’s helpful for me. Exercise and spending time in nature helps me as well. Being around large crowds of stressed people, like Walmart is definitely a place to avoid if possible, for emotionally sensitive people. I deal with tactile sensitivity and have to avoid almost all man made textures, which of course isn’t always possible to do.;).

  36. Thank you for sharing this. We too had our daughter in ABA for three years, finally removing her from the program because we were more and more convinced of its limitations. Part of our problem was that it was an approach that didn’t give her much of a voice, and had little respect for her emotional needs (what “broke” me was a consultant who told me not to comfort her when she was crying because it would encourage her to cry more.) But the other problem we had with it was that it consisted of nothing but memorization of facts and actions. We felt she was capable of much more than just memorizing. There was no room in that 40 hours a week for her to be creative, to solve problems, to practice genuine play, to just be with her family, to follow through with her own ideas. So we switched over to our other funded program, based on DIR/Floortime, which is entirely focused on relationship, creativity and problem-solving, and she is thriving, and more emotionally stable. My son, also autistic, has been in the DIR/Floortime program for a year, and his development is comparable to his sister’s, and in some ways ahead of her. Some things we work on in an ABA sort of way, like chores and self-care skills – but in a similar way that we would use behaviour modification strategies with all children. I think an ideal program would incorporate both approaches, adjusting to the child and to his or her particular needs. But I really do agree we need to let our children be – and celebrate – who they are.

    • Deborah – Wow! I could have written this comment. It’s absolutely frightening how similar our stories are. We had Emma’s ABA supervisor say to us (and I quote as I’ve never forgotten his words) “We have to break her.” I responded with, “She is not a horse, dammit!” Meanwhile Emma was screaming in her room where one of her ABA therapists had taken her and when I went in finally she said I was encouraging her to cry and that I was giving her positive reinforcement. I used to crouch outside her bedroom and weep, literally sob while listening to her scream. I felt I’d entered hell, literally it was like being in hell. Eventually I couldn’t take it any more and I told the therapist that what she was doing was wrong and the therapist stormed out saying I was impossible and the agency called to say they could no longer work with us. We had few options. I was terrified. I felt completely isolated, confused and so, so frightened. I remember thinking that in order to help my daughter I had to toss all my maternal instincts out the window. I remember thinking I would have fired anyone who treated my son the way they treated my daughter. Finally I found Stanley Greenspan and we trained with him, pulled Emma from her school and began doing Floortime. It wasn’t the answer, but it was better.

  37. Unfortunately, ABA as a profession is in it’s infancy. It was only 11 years ago that the Behavior Analysts Credentialing Board (BACB) was established to set standards of educational and supervisory requirements for practitioners. Prior to that, the State of Florida was the only place in the world which monitored ABA practices and those claiming to be able to be able to develop, implement, and train others on ABA programs. This is why the quality and effectiveness of such programs can vary so widely. Still today, the BACB is increasing their requirements and more and more is being put in place to monitor this in the US. However, there is a HUGE difference in a practitioner with a degree in behavior analysis and one with a degree in something else who has met the requirements for BACB certification. Point is, you must research not only the methodology, but the individual who will be directly supervising and implementing the program with your child. Also know, there are 3 levels of certification- Bachelor’s Master’s, and PhD level certifications. The PhD level allows for ‘experience’ in lieu of testing at this time-which isn’t producing quality practitioners either. Just think of it kind of like schools-you can have a crappy school but a great teacher, and enroll your child in a great school then get assigned to an awful teacher-you must make sure you get the good teacher.

    • Amy – this is very interesting. I had no idea. It makes a great deal of sense that what Emma experienced in 2004 was vastly different from what many are writing of their experiences on the comment thread. Thank you so much for writing this!

      I love what Karla, one of the commenters stated above, “I’m wondering if, rather than focusing on the term ABA, which apparently is currently embroiled in a semantic whirlpool of competing definitions — that the focus be on what the intention is? What is the approach to the person’s unique human dignity? What is the approach to the sensory awareness of the person? What is the approach to the individual needs and interests of the person? What choice does the person have in agreeing to or retreating from the application of the treatment? And of course, does it presume a competence that is intrinsic to the person (and not applied along with the treatment)?”

      These are the questions I ask myself whatever the situation may be!

    • I completely agree with this post! If you have an awful pediatrician you don’t necessarily swear off all pediatricians, you find another one who will listen to you and work with you to put together the best health program for your child. With ABA I think that the efficacy of implementation is so important. We have an excellent BCBA-D who directly trains and oversees the grad students (all of whom are working towards becoming BCBAs themselves) who do the direct one-on-one hours with my kids. The biggest problem that we found with other providers here in AZ is that none of them had Habilitation workers trained and ready to be used and were unwilling to train the workers that we found and wanted to have trained. You can have the best BCBA in the world but if the hab workers supplying the one-on-one hours are not properly trained to implement the program you will still have problems. You really have to bring your A game to putting the program together for your child and make sure that everyone involved is not only qualified, licensed and certified but properly trained and overseen. And I think the more involved the parents are in every part of the program the better. Especially when they are trained and working with their child as well as hab workers, teachers, therapists, etc. Then you don’t encounter the feeling of being left outside of a closed door while your child tantrums against the very first demands that anyone has every made on them with contingencies. I know that getting through those first tantrums can be hard on parents and it was hard on me as well, but it was so wonderful to see the click when my daughter realized that she didn’t have to tantrum, that there were other ways for her to communicate the things she was wanting, needing, feeling. Now at 5 years old, two and a half years into her intervention program I think that I can safely say that outside of expressing her fear of medical situations (she is medically complex and has had many hospital procedures) she really no longer tantrums. At least not in the multi-hour, wake-the-dead style she used to. Nothing even close. When she starts to get upset now she says things to herself like “it’s ok, it’s ok” to calm herself down and comes and gets me to try to work on whatever it is that is wrong. She still has many challenges, especially medically, but she has come so far. Not the miraculous recovery of “Let Me Hear Your Voice”, but still she has built so many skills. Including potty training! And my youngest who started her intervention at 16 months, (18 months younger than her older sister) has had something close to that level of recovery. She has a diagnosis, she is autistic and she still has a lot of challenges with self regulation and emotional control, but she is able to speak and express herself in ways that I hope her older sister one day will. Either vocally or with her AC device. And not because I want to force her to appear normal or hide her autism or anything like that. Just because I want to know all of the awesome and amazing thoughts that have been going on inside that head all of this time. I want to know her better and for the world to be able to know her better. I want her to have as many options as possible for her future. I want her to have a fun, exciting and amazing life!

  38. i have twins both following DIR and when we were given the two programs, as a teacher, I knew in my heart ABA was not for us based on its fundementals. I think parents are wanting instant improvements when hearing about the remarks earlier about DIR. The fundalmentals with DIR, is child development and when your child is ready to move your child it ready to move. Like filling a tower of glasses with champagne when one cup fills it moves to the next cup. it takes time and on your child’s timeline not ours as parents. We have had tremendous leaps through the likestones using DIR therapy and feel accomodation and validation is the way with autism. Teaching children why they react to the world the way they do and for parents to understand why how to defuse and redirect is one of the reason this therapy is so effective. It may lack in what you call “intensity” becasue you cannot mark or chart like ABA on paper. But it gives you a connection to your child that you once had, it gives you a watchful eye to pin point out which sensory need is overstimulated. You are allowed to become a family again but a stronger one that truly understands your child and accepts your child and connects with your child. Because autism is not a label but just a different way to see the world

    • Terrific points Jackie. I wrote a post -https://emmashopebook.com/2010/04/30/a-tribute-to-stanley-greenspan/ -on this blog about DIR and Stanley Greenspan when he died. He was a brilliant man.
      As Emma has grown older and as we have progressed in our own way with all of this we no longer use any “methodology” unless “patience” is considered a methodology! My impatience, that has probably been the single biggest hurdle for me to accept about myself and the thing I continuously try to improve on.

  39. Pingback: Tips You Need To Know If Your Child Is Autistic « yachtclubshipstore.com

  40. I stumbled onto this post as I was searching for parental experiences that stood out to me as being about respect for children, acceptance of children. I’ve taught children with autism for many years now, and have been undergoing a professional evolution as I struggle with much of what you say. I tried the “ABA” way — not even discrete trials, but “applied verbal behavior” and whatever other hip terms are being thrown out — but did not see dramatic changes that were sworn to happen. My students are likely never to “pass” for NT, and we love them for themselves. They are bright and creative and full of joy (I laugh so much every day). As we have slowly evolved to a classroom that focuses 100% on that, my students appear happier, more engaged, more curious, more intrinsically motivated to explore their world — since it is not a world that shuts them out and denies them. Of course, I cannot measure any of that (which is where ABA has the advantage). That being said, we do use some “ABA” in our classroom, though it is modeled after the Early Start Denver Model and PRT which have huge developmental bases and truly acknowledge that our students have internal needs, motivation, desires, that they are so much more than a collection of behaviors (true ABA, in the style of Skinner, is solely about external, visible behavior). When I saw ESDM in action, when I passed my PRT certification, it looked so much like the way that I play and interact with my 4 year old niece, which was enough to have me hooked. Because, you pose an excellent question — if we would absolutely never do something with a NT child, why would we do it with any other?

    Sorry for the lengthy post, but am just so happy to find others who are fighting back against the idea that all children must be ONE WAY. I highly recommend Alfie Kohn’s work, especially Punished by Rewards and Unconditional Parenting. I think you’ll find them fascinating.

  41. To answer your question, yes I do use some of Cali’s ABA programs on my daughter Ava, who is 2 1/2 and above average in her learning and development. In fact I have a video of it on my blog. She was noticing me teach Cali how to count and began to do so herself. In order to help her in this learning I began to use level one of Cali’s program with her. For her, it only took a week of level one trials before she quickly caught on and move on to level 2. I don’t see this as a bad thing. A program that helps my girls learn certain academic concepts. This can only be good right??

    Cali HAS autism, she is not primarily autistic. She is Cali. Autism is a part of her. I try to teach her to compensate for the autistic traits that get in the way of her learning, but I would never want to rid her of it completely. If it somehow is a part of making her the funny kid that she is, than bring on more of the autism. If it is somehow a part of making her ultra empathetic and caring, bring on more of the autism. But when she couldn’t figure out how stay together at Disneyland or in a parking lot, I was determined to master Cali’s program (ABA style), of staying together. This program was to simply take her outside for walks everyday, weather permitting, and use the phrase “Cali, stay together.” If she walked away from us, I would quickly catch her, bring her back to our side and say the same exact phrase, “Cali, stay together.” It was a long and difficult experience trying to teach her to stay together, but it worked. I don’t know if this is the kind of ABA therapy y’all were involved in, but it scares me to think what could potential happen to Cali if she never learned to “stay together”. Nightmarish actually.

    From the small details I have described to you here, are these ABA programs bad? I am honestly asking because I would never choose to participate in harmful therapy if I knew that is what it was.

    Cali uses ABA to learn academics, to teach her to attend to an activity, to learn how answer “yes”, but she does not exclusively learn from ABA. My belief is that a child will achieve “optimal outcomes” by a combination of therapies. No two children having autism are the same, so no one therapy is the complete answer. Therapy for Cali has helped her to be the best Cali she can be at this point. Whether that means she is more typical now, or still a girl with autism doesn’t matter. She is Cali and that’s all we want her to be.

    With all of this said, I respect your opinion and believe that Emma is learning and growing in part because she has an informed, intelligent mother, who’s love is the driving therapy.

    We are probably in complete agreement that love has no flaws.

    • ABA appears (thankfully) to have changed quite radically in its implementation and even in it’s basic premise which does not presume competence, but does the opposite – works from a deficit model, so it’s impossible to say how the program you are doing with your child is similar to what we did for a year and a half. Having said that, here are the things I look at when considering any therapy for my child (either child, neurology aside).

      1) Does it presume competence? (http://www.thinkingautismguide.com/2010/07/living-least-dangerous-assumption.html)
      2) Does it encourage listening on the therapists part? (Is it showing respect to the child?)
      3) Would I use this with a neurotypical child? If not, why?
      4) Is my child displaying behaviors that show me the therapy is beneficial and positive?
      5) Is the therapy requiring my child to do something that is physically painful or ultimately impossible for them to maintain over a longer period of time? In other words are phrases like “Quiet hands” or “Use your words” or “Look at me” being used? (If you haven’t read this post from Julia Bascom regarding Quiet hands do – http://juststimming.wordpress.com/2011/10/05/quiet-hands/

      Finally, some thoughts on using person first language – our children will one day grow to be adults and person first language, while appealing to many parents is a subtle criticism of who our children neurologically are. We do not have any problem identifying ourselves as being a scholar, for example, or Chinese, or American. When something is neutral or positive in our minds we readily identify ourselves as such, however when it is considered something not positive we then insist on “person first language.” I want my child to be proud of who she is, ALL of who she is. I do not want her to grow up believing there is this part of her that she must learn to hide or be ashamed of. Here are a couple links if you’re interested in how some Autistic adults feel on the topic – http://www.autistichoya.com/2011/11/identity-and-hypocrisy-second-argument.html
      http://www.mmonjejr.com/2012/12/person-first-language-doesnt-put-people.html

  42. there’s a lot of talk of ‘forcing’ and ‘restraining’ and controlling and ethics here.. and I think that this is an important conversation to have because we of course want only the best treatment and support for our children, whom we love just the way they are.
    I’ve done extensive research on the subject and I can tell you with confidence that if someone is somehow forcing your child to do something or restraining them then they are not following ABA. In fact, behavior analysts are quite outspoken against the use of aversive or coercive techniques. They point out the dangers of punishment- such as emotional withdrawal, neurosis, and aggression. They advocate positive reinforcement as the best approach. The only place you have to bring ethics into the mix is when you’re talking about a child that is seriously injuring themselves (like head banging). This is the only time they would think of using any sort of punishing contingency–and even then, they work to establish a way to use the least intense punishment possible (like water misting or turning off the TV) alongside positive reinforcement and providing unpunished alternatives. There is still a debate whether that is even warranted, but when a child is engaging in a behavior that could lead to permanent brain damage, it’s pretty obvious that you want to go ahead and figure out why that is (pain? getting out of the situation? attention?) and how to help.
    ABA requires appropriate training, but it gives you hope because as long as you can step back and really look critically at the situation, you can see what’s maintaining ‘undesireable’ behavior and change the way you respond so that the child gets more out of acting a different way. OK for a general example, your kid wants a snack. If you respond to your kid yelling ” mom get me a snack” by giving them a snack, you’re increasing the chances that they yell like that again. Instead of scolding them for being rude, you respond when they come to you and ask politely for a snack. You model good behavior, and you give a clear alternative “say please” and you stop reinforcing the yelling. I don’t consider that a horrible approach, do you?
    Applied Behavioral Analysis is an offshoot of behavioral analysis (which, by the way, is built on rigorous scientific standards of investigation). It might be that because you hear about Pavlov and Skinner boxes in introductory texts, you stop there and take that to be the extent of what this is…The fact that some principles of behavior and reward established by behavioral analysts are used to train dogs does not mean that your child will be treated like a dog in obedience school. That’s like saying taking your kid to the doctor is the same as bringing them to the vet. While both professions build on the same groundwork of biology and natural sciences, the application and focus is quite different.
    ABA takes away the labels. It’s the first approach to actually go in and find a way to actually help people with severe disabilities with things from tying their own shoes to going to school to learning how to have a conversation. Before the entrance of behavioral analysis on the scene, people were often labeled and sent to a home.
    We use behavioral principles all the time whether we know it or not. Potty training charts, praise for a job well done, “you can watch one TV show when you finish your homework”, etc. Learning about behavioral principles is an important tool for all parents. Implementing ABA for your child with autism can change your child’s life. We’ve been using ABA with our son at preschool and at home, and after 2 years the results are quite clear for us. He feels much better, he’s more confident and engages more. He’s starting to speak after being completely nonverbal. I think it really depends on the individual, on the family, what you can do, what’s best for your child in your particular situation. I would just urge people to really critically look at the pros and cons of both the method you choose, as well as finding properly trained people to work with. The way you describe ABA here is not accurate and I just hope it won’t dissuade people from considering it as a treatment option- it is the only one that has been proven effective when implemented correctly and in a positive way!

    • Solia, thank you for your comment. However when you write, “The way you describe ABA here is not accurate..” I am compelled to respond. While what I’ve described may not be how you’ve seen ABA used, it is incorrect to say my portrayal is not “accurate.” I assure you, not only is it accurate, it is how it was done with my child, not by just one or two therapists, but by DOZENS of therapists over a two year period. After reading many of the comments here I began to think that perhaps ABA had dramatically changed since 2004. A few months ago I was invited to tour a highly regarded ABA based school and was horrified by what I witnessed. The fundamental problem I have with ABA is that it does not presume competence. Autism and those who are Autistic are viewed as having an inferior neurology compared to the neurology of those who are considered “typical”. I vehemently disagree with this thinking.

  43. I did not mean to imply that your portrayal of your experience was inaccurate- I’m very sorry if that’s how it came off to you. I respect you as a parent for advocating for your daughter, and not putting up with substandard care. I did feel that your post extended your negative experiences to applied behavioral analysis as a whole- and that’s what concerned me.
    I don’t know what horrified you at the “highly regarded ABA based school” but the Behavioral Analyst Certification board has very clear standards, and a strict code of ethics. They urge people to submit complaints, and they don’t take these matters lightly—so I would if I were you. http://www.bacb.com/index.php?page=100579
    There are a lot of misconceptions about applied behavioral analysis. It’s not just for people on the spectrum. It’s commonly used in the workplace and in curriculum design, for example. It’s used to help people become more successful in their careers…it’s also used for people who need to overcome crippling phobias. Here is some more information on ABA in general: http://www.bacb.com/index.php?page=2 and on ABA for autism: http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba .
    As to your statement that “ABA does not presume competence”…and that behavior analysts regard those with autism as having “inferior neurology,” I have to disagree with you. That’s certainly not what is taught at University, it’s not what the textbooks and handbooks and instructors and BACB teach. I absolutely wouldn’t want someone spending so much time with my son either if they didn’t respect him for who he is.
    Behavior analysts were the first to go into ‘homes’ for people that society had previously given up on and apply their knowledge in order to teach them skill sets that enabled them to feel more confident and take better care of themselves. To be able to communicate better, and to read social cues. To gain independence. The behavioral analysts believed that these individuals could learn just like anyone else- but the ‘traditional’ way of teaching didn’t cater to the way they related to the environment at that time.
    They look at a person with autism and they see that certain things don’t come as easily to them as to other people- but that doesn’t make them inferior. It does make it harder to function in the world though. They find ways to make learning rewarding and to take small steps to boost confidence and build up these skills. Our son looks forward to school and asks for extra sessions. We’re lucky to have found such a great support for him through our AB analyst. I wish that were always the case.
    ABA isn’t designed to change people’s identity or to reprogram people to some random standard of whatever ‘normal’ might be. If someone has dyslexia, teaching them alternative techniques to master reading doesn’t demean them or imply inferiority. It helps them to read.
    I look at ABA as a chance to help my son learn skills that he wouldn’t otherwise pick up naturally (such as verbal communication, and taking turns) that will help him immensely in his life. He is a wonderful kid- he’s perfect to me already. I think a big part of our job as parents, though, is to help our children learn to function in the world- and it’s up to us to decide what they need in order to grow up to be confident, happy, and self-reliant. I don’t think that investing time and love and support for my son is sending him the wrong message.

  44. Fabulous article. Thank you for writing it as I plan to share this everywhere I can. I have 2 autistic children, I provide all of their therapy and I am a homeschooler. Upon reading about ABA years ago, I DID FOLLOW my maternal instincts and threw this garbage out the window! What a praise. What we used were love and patience and learned to understand our children’s behavior, the root causes of it, all of it has a natural reason that makes sense. We have always worked with our kids and not against them. My oldest is now 9 and is a straight A student, my youngest is 3. Both of them, very happy, healthy, autists with bright futures ahead. Thank you!

  45. Bravo, Ariane! My daughter was born in the first wave of increase in autism (1989). I hindsight I am so glad ABA was not very well-known when my daughter was of preschool age. ABA therapists are so locked into what appears as indistinguishable from peers that they have lost sight of personhood. My daughter is a born person first. I don’t aim for compliance. I am for a thoughtful person.

  46. Thank you Ariane for a great article. We did it for a year, then quit and just used the parts that made sense. We do more Flooortime/common sense now. And now I have discovered a learning method that is working for my child and I will be hiring someone with experience in iPads and apps to help me take it further. I am really thinking at this point that autism is just a LEARNING DIFFERENCE when it comes to academics. And it is also just a different way of being…first understand, then be understood, that is my motto now.

    • You know even now after all the research I’ve done regarding autism, I STILL had to reread your sentence, “I am really thinking at this point that autism is just a LEARNING DIFFERENCE when it comes to academics. And it is also just a different way of being…” I believe this, I know this to be true, but still, after so many years, I can hear a little voice in my head whispering, but maybe that’s not right. Maybe she can’t learn, maybe she really isn’t capable of learning. I’m thankful that voice is now largely silent and only occasionally am I aware of its lethal whisper. Years and years of being indoctrinated with misinformation is very very tough to unlearn, particularly when there is so much fear.

      Thanks for this comment. My fear and worries do not help me help my child. Believing in my child, helps my child.

      “First understand, then be understood…” Love that.

  47. Some of the best comments about Autism and ABA I have read. There seems to be an ABA industry out there that reminds me of Big Pharma. Very powerful and very much devoted to their system. I really hope to see continued research on the best forms of treatment for the future and what it brings. Your have a cool head and accept feedback in a graceful way. Not easy to do I am sure. Thank you for speaking up.

  48. I have just found your blog. Thanks for writing this. I agonized over ABA, but only continued with it for two years because I did not know any better. Initially it seemed to work okay, but over time, it became laborious and I could see that it producing undesirable outcomes in my son. Prior to ABA he never stimmed. Once he started ABA, he began stimming excessively and wetting himself. There were times he was happy, but most times he was miserable and I just could not take it any more. I certainly think the success of the ABA program lies in the skills of the implementer and finding someone who understands your child and how to use different learning styles or “multiple intelligences” to effectively reach and train the child to be the best he or she can be. The most problematic ABA providers I found were those who did things by the book and never bothered to integrate or accommodate my son’s special abilities. I found that in many ways I was the expert on my child and every program written by the BCBA, in many ways were trials/experiments that were not guaranteed to work. Some of the techniques advocated are equivalent to torture in my view. The worst advice I had was when one of the program managers suggested that I starve my son before every session, so that he could be more motivated to work for his food- this was an extremely wicked suggestion in my view, which I refused to go along with, particularly as I never that my son could not focus or concentrate when he was hungry.
    I have come to develop the view that ABA and other forms of therapy should serve the child, not the other way round. However, unfortunately, most providers I have met, feel that they are doing the child a favor and that the child should automatically fall in line with the “programming” or goals they set. I now homeschool my child and am happy to say I have successfully deprogrammed him to become more independent, and cultivate his love of learning using educational IPAD apps that are well designed. I have found that these accomplish a lot of the ABA goals at a faster pace, particularly those that come with the control of error. We are now focused on speech therapy, rehabilitation via OT and “auto-education” using IPAD apps and Montessori tools. We have less need for consultant BCBAs.

    • Thanks so much for commenting. Sounds like you’re finding what works for all of you, always a great thing! Showing my daughter that she is loved, supported and encouraged for her own ideas, for her interests, for her loves is one of the best things we’ve done. One of the things that has made a massive difference is moving away from insisting that she “use her words” but found alternate ways for her to communicate. She now is typing more and more and what she has to say is absolutely mind blowing!

  49. I think it all dependes on the ABA provider. Many of the so called wonderful ABA schools, such as in NJ and elsewhere, are still implementing the old rote style ABA. Nothing is really generalized, particularly language. Many at these schools are arrogant and refuse to update themselves. The New England Center for Children in Mass. is awful. Rote and run by arrogant individuals.

  50. Hi Ariane,
    I just found your blog as I am working with children on the Spectrum at a preschool in Los Angeles designed for their unique perspectives & experience. The school’s model is relational and although the expectations are specific regarding tolerance building for nonpreferred activities such at being at the table, etc, a strong focus is on emotional knowledge leading to thorough self knowledge & decreased symptoms. It is a program for high-functioning children, their entire family and is very language based. The children are not rewarded except by their own feelings of self-mastery and in that way become “compliant” to the rules of the environment. It is an absolute joy to work there and the children are talented and funny, allowed to be themselves because they have the experience of being so valued by all of us & their families, who process grief and guilt in parent group and couple therapy. It has been my observation that by owning their feelings of anxiety, etc., and naming it to tame it, that they are whole people who graduate from kindergarten at our school, ready to face usual life challenges (and those usual to them) but with so much self-acceptance. They’ve generalized the intervention. And- they have a voice- their own.

    I found you because of my conflicted feelings regarding ABA. It is so prevalent and although I have observed it to be possibly helpful at very early ages to preserve family life at home, beyond the age of 2.5, I wonder about its damaging effects. We have had parents who have come to us who have been advised by an ABA based, well-reputed research community, to ignore their child’s emotional expressions. The child is just doing it for attention—-Do we communicate for any other reason? One mother was instructed to turn her back to her child & be absolutely silent. The negative impact of her ignoring her child, took one year of concerted efforts to repair. He is doing so well and so is the whole family. We focused on repairing the family relationship, as well as growing our own relationship with the child. Newer research is showing that neural pathways connect and intelligence increases through an individual’s ability to experience and understand their emotional state. Children are physical communicators and it seems organic to take their physical cues very seriously and wonder what they mean for that child. I’m concerned about the messages the kids receive when they are trained for long periods of time to not be and feel themselves. I have also discussed the burn-out rate experienced by peers who previously provided ABA services. It’s difficult for parents to know what to do and it’s an expensive endeavor embarking on interventions, so when insurance can pay for a service, it seems more valuable and of course, economical to a parent. Hopefully, professionals can stay open minded & not fight for one model but rather for the individual.

    • DG – The points you bring up are why I object so vehemently with the basic foundation of ABA. The psychological toll ABA takes on our children is evident by the many stories those children, now adults, are writing about and those stories are only the ones we are now hearing about. There are countless people who suffer from emotional and psychological damage because of the ABA they were given as children. The emotional and psychological toll ABA takes on parents is not something that is well documented, but I can tell you, that I certainly have never completely been able to forgive myself for the things those ABA therapists did to my daughter, in our home, with me standing by and not kicking them all out. I continue to hear horror stories from Autistic friends about what they experienced at the hands of ABA therapists, all of whom had their best interests in mind.
      In the end I don’t care what any one calls it, this isn’t about ABA per se, this is about people treating children as less than, as incompetent, as having an inferior neurology. When that changes I will be open to revisiting ABA as anything other than a bad idea, but as yet, I have seen nothing that tells me this is happening or will happen any time soon.

  51. There are a lot of similarities in your philosophy as there are in the philosophy of people who are deaf and use sign language to communicate. They believe deaf is not better or worse, just different. Would we not allow them to communicate their needs because it looks different than the way we communicate our needs? Long ago they were taught that it is better not to sign and to try and make speech sounds so they could fit in better with the majority of the public. A lot of damage was done by not giving them a way to communicate. I always wonder….what are our autistic friends trying to tell us? The use of ABA to shape behavior is one thing….to make it a way of life for a child is totally different. Never forget your parenting instincts!!!!

  52. Ariane,
    This was a wonderful perspective – thank you for posting.
    I completely understand your point of view and it sounds like in your daughter’s case ABA was not the right therapy. I just wanted to offer a story from the other side…
    My son is 2 and a half and was diagnosed with autism 5 months ago. He started 30 hrs of ABA therapy at our home immediately after, and the changes that I’ve seen in him have been unbelievable. The greatest difference is that he is now HAPPIER. He was very withdrawn before the therapy and rarely engaged with others. I feel that the therapy helped him learn how to make eye contact and interact with others, and this new skill makes him extremely excited and alive. All of my family and friends are amazed at the change and comment every time they see him about how much more interactive and happy he seems.
    He also enjoys the therapy time. His teachers are wonderful and from an outsider the therapy looks like normal play. He is excited for them to come and sometimes even asks to play with them when they aren’t here.
    I have definitely had thoughts related to your comments, about not wanting to change who he is or try to get rid of his quirks that I love, but in our case I do not feel that the therapy is doing that, I feel that it is just helping to bring him out.
    I also feel that I want to keep as many doors open for my son as possible. Like you, I believe that we should fully accept autistic individuals for who they are and that we shouldn’t view the differences as a disability. However, in order to function in our society it is important to have certain skills. I want to help my son to be as functional in society as possible, for his own happiness. I want him to be able to make connections with others and have a social network. I want him to be able to hold a job and have choices about what he wants to do. I feel that his ABA is helping him to have success in these areas.
    I found your blog because I was googling to find perspectives against ABA. Our early intervention providers were very against the therapy and made me feel as though I was harming my son by choosing to go with the intensive ABA. I was confused as to why anyone would react this way, and your post gave me a great perspective into the other side.
    Clearly ABA is not for everyone, but I do think that it is wonderful and life changing for my son. As parents we need to realize that each child is an individual and that what works for one child may not for another.

    Leah

    • I feel the same way about my kids’ program Leah. And also feel sad for those who have had bad experiences with ABA in the past. I think that like with many other fields/sciences/medical areas, ABA has evolved and transitioned over time to better serve the needs of the clients and the practitioners have come to better understand and respect those clients. From what I have heard across the internet and at conferences from other parents of small children, I think this is much more the norm now than back when Emma and others in these comments had bad experiences. At least I hope that is the case.

      • Jen and Leah – it’s always wonderful to hear the positive stories from people who feel strongly that ABA has helped their child.

        Sadly there are far too many Autistic people, now adults who speak from personal experience about the stress, trauma and self loathing ABA instilled in them at such an early age. Those people are telling their stories more and more and they are the ones who CAN tell their stories now. There are countless others who do not speak, were not given alternate ways to communicate and so remain silent.

        Lovaas, who developed ABA was also involved in the Feminine Boys Project, also known as Gay conversion therapy, which was also thought to be a “condition” that greatly reduced ones ability “to fit in.”

        Times change, we learn more thankfully, and things that were once considered good ideas are no longer.

        I hope you are correct and that your children will only see the positive affects and not be damaged by the negatives. I would like nothing more than to be completely wrong about ABA.

        • Ariane,
          I do understand your sentiment and I’m sure that I would feel similarly if my son had had the experience that Emma did.
          However, I disagree with some of your statements.
          I think that to compare ABA to the Feminine Boys Project is unfair. The only thing that has kept gay men from living fulfilled, happy lives is societal views. Once they are allowed to be accepted they have all of the same opportunities for happiness as others. This is very different for many individuals on the autism spectrum. Most autistic people have difficulty communicating with others, which makes life much more frustrating and difficult. A lot also engage in self harming behaviors, which impede on their happiness. Just 2 examples of things that can make life harder for those who are autistic. Even if one day autism is completely accepted by society and there is a rich community where autistic individuals can connect with one another, they will still have struggles that others do not.
          ABA is helping my son to communicate and to connect with others, which are very important to his happiness. Numerous controlled, randomized studies have found ABA to be significantly more effective that any other therapy in teaching autistic children to communicate. I don’t think that any parent of an autistic child would disagree that improved communication would be beneficial to their child.
          I’m not sure what you are referring to when you mention those not given alternative ways to communicate – the ABA organization that we work with teaches children to communicate in any way that works for them – pictures, IPAD programs, etc. I’ve never heard of an ABA therapist discouraging alternate forms of communication.
          I know my son very well and I am extremely confident that in his case the therapy is not leaving emotional scars. They use only positive reinforcement and never make him feel bad about his behaviors – only proud when he masters a new skill. And his pride is very apparent. As I mentioned earlier, he greatly enjoys his therapy time and sometimes requests to see his teacher on the weekends. I have never felt that the therapy is squashing his uniqueness, only bringing out new parts of him and allowing him to better communicate. His therapists love him and all of his quirks. They seem him as a unique individual and would never try to change that. Every objective that they are working on is related to helping him live a fulfilled, independent life.
          I have had a hard time with the negative views of ABA. As I mentioned in my previous post, our EI organization discouraged me from going this route and made me feel as though I wasn’t being a good mother if I did. My husband and I are both in scientific fields and we examined the research and decided to try it anyway (as our doctor had recommended). However, it makes me very upset to think that their viewpoints will discourage many parents from using ABA. The changes I am seeing in my son after only a few months are absolutely incredible. He already gets so much more joy out of life. He has less frustration because he can effectively communicate his wants and needs, and he has so much fun interacting with others. I feel that if he hadn’t received the therapy his life would be much less fulfilling. All of the parents who I have met with children in his program feel the same way. Obviously this is a selective group because they have not left the program, and I realize that people have negative experiences as well. However, for many children ABA is an amazing therapy which allows them to live more content lives and feel good about mastering new and important skills.

          • Dear Leah, Ariane was reporting a historical fact about Ole Ivar Lovaas. This is not a good reason to say she is being unfair. What she has said is a matter of public record and she is being very gracious. Please do not attack my friend, who has said she is happy for you. By and large, because of the theoretical foundations upon which they are based, behavioristic approaches can be less than ethical. It is very good luck that you and some others can find practitioners willing to bend the rules philosophically in “ABA” practice to enact positive teaching. I applaud them, and also what you said about social acceptance for my people. But I urge you not to blame my friend for telling the truth. Love, Ib

            • I’m sorry if my post seemed like an attack, I certainly did not mean for it to! I truly do see and understand both sides of the argument. But I get defensive when people imply as if I am doing something to harm my son. I also feel as though all of the negativity toward ABA is very harmful in preventing its use for some children who it could greatly benefit. As I said, I am confident that my son’s life would be much less fulfilling if we hadn’t found ABA. My son’s therapists are not “bending the rules,” they are part of New England Children’s Center, a large research based group that practices ABA exactly as intended. From my understanding and experience ABA is all about positive reinforcement. I am interested in hearing what you have found to not be “positive teaching” in your ABA experience – not to debate you but just to learn about the other side 🙂
              I am not blaming anyone and really related to a lot in Ariane’s original post. I think that we just have had very different experiences.

            • Ariane,
              When I posted on this blog, I had not yet explored your website or read any of your other posts. My son was diagnosed with autism so recently, and I am still beginning to learn what it means and how I feel about it. I have been reading more of your posts, and been thinking about your points of view, and it has been enlightening (and made me teary on several occasions). Thank you.
              This is a beautiful website and I feel bad if my post felt negative. I have an overall different perspective about autism now. Since his diagnosis I have always felt that his autism is a part of him, and that if he hadn’t received this diagnosis he would be a different child – which I would never wish for because I love the special boy that his is. Although of course I do wish for those things which cause him distress to improve. I have always felt uncomfortable with people discussing a “cure” or “recovering” those with autism because I do not feel that it is something that needs to be cured, as it is part of who these people are. But I hadn’t thought about society (and autism therapies) as not accepting those with autism, and trying to turn some children into someone who they are not.
              So after these new thoughts here are my feelings about ABA. I do still believe that ABA is the best choice for my son, and that in his case the therapy is enjoyable and already increasing his happiness, and not attempting to change who he is. BUT I can really see how this therapy could be very wrong for many, and how recommending it for all can be very harmful (which I hadn’t realized before).
              I really want to thank you for helping me sort through my beliefs and really question things with your website. It has been very powerful for me.

  53. Leah – when my daughter was first diagnosed I did what so many parents do. I read everything I could get my hands on and I researched the best therapies available. I read the studies, I didn’t like much of what I read about Lovaas, particularly the way ABA was practiced in the beginning with sleep and food deprivation, adversives, etc, but was assured by the agency we ended up using that things had dramatically changed.

    My objection to so many of the various therapies and methodologies that are used with autistic children is that they are firmly based in the medical model of disability. Autism is this tragic thing that our child “has” and we must “treat” it. The therapies are less about looking at our children as whole beings who have tremendous talents, wonderful attributes that if encouraged and supported, can flourish, but is much more concerned with a list of deficits. We must “teach” our very young children to make eye contact, to speak in an expected way, to do x, y, and z as their non autistic peers do, but all of this is ignoring the fact that all of this comes at a tremendous price. If you read enough blogs written by Autistic people you will hear about those costs. How these things cost them their self-esteem, it erodes their sense of self, it makes them feel they cannot do the simplest things “right”.
    My daughter recently wrote (as she cannot rely on language to accurately express herself) “I want to disappear when people talk about me.” Up until two years ago all of us spoke of my daughter in front of her and assumed she didn’t understand what we were saying. In our ignorance we did terrible harm. We didn’t mean to. It was never our intention. And yet…

    I continue to write this blog because I hope others might not make quite as many mistakes as we did. And the biggest mistake we made was listening to all those therapists who were so well intentioned, but who were not talking to Autistic people.

    Spend some time reading some blogs by Autistic people. I have dozens of them listed on the Resources page on this blog. These people are blazing a trail for our children so that they might not have to live in as much pain as so many of them do.

  54. Have been exploring the blogs of Autistic people (and more of yours) since reading your message. Have been in tears. Thank you.
    Also, I realize now that I obviously misinterpreted a lot of what you stated in your response to me and I apologize.

    • Leah… Sending you virtual hugs. I understand. Really, I do. So glad you are reading all the beautiful Autistic voices out there.

      By the way – Ib (who commented above to you) has a terrfic blog where she invites parents to ask questions. Tiny Grace Notes. It’s a wonderful resource. Ib is like a sister to me and I always hope, when I meet a new parent that they will be fortunate enough to find a friend like I have with Ib.

  55. I feel there is a great misunderstanding of ABA here. As someone who works in the field it this is hard to read. ABA has its own code of ethics. It is front and center in our field. As someone who has worked with a kid with no verbal or sign communication, worked countless hours with them and see them start communicating through sign then started shaping verbal words through sign. It is such an incredible feeling. Reading these words, I have to be honest, it’s like a slap in the face. If this is what you think ABA is about I feel you and the others you have spoken about have received bad services. But perhaps the biggest misconception written here ( and it is repeated several times) is that ABA is only for autistic kids. This is just wrong. ( I mean that in the nicest way possible) we believe EVERYONE can benefit from ABA. There are so many other fields of ABA besides the treatment of autism. Please do more research into what we are really about. I would hate for this to be people’s perspective. Peace, love and hope.

      • I meant that in the nicest way possible. I will never stop researching, I never want to stop learning, all I’m saying is a lot of the points seemed to contradict what we are supposed to be doing and what the top professionals teach us to do. I don’t want to lump all ABA professionals as one. Everyone one is not the same.
        All the best…

        • Tara if you really mean this, then I urge you to begin reading what Autistic adults are writing. Very few support ABA.

          That cold slap that you felt when you read this post, that is nothing compared to the horror many of us will have to live with for the rest of our lives knowing that we stood by as an ABA therapist kept our child in a room as she screamed, instructing us to ignore her pleas to be let out because it was viewed as a behavior that needs to be extinguished as opposed to communication that needs to be respected and at the very least acknowledged. I am by no means alone in my bleak view of ABA. There are a growing number of people who feel similarly.

          ABA is based in the medical model of autism and not a social one. It does not presume competence, it does the opposite and presumes incompetence. It is based in an antiquated view of autism. A view that will absolutely shift in time. It already is. As such it is set up to look at the autistic child’s deficits (and compares autistic neurology to non autistic neurology, which is purely subjective and a limited way to view any neurology.)

          I wish you luck in your endeavors Tara. But do the children you are working with a favor and at the very least learn what many of their neurological brothers and sisters are saying.

          • I’d like to share my view on the topic.
            I recently learned about the neurodiversity philosophy and movement (thank you Ariane). I was brought to tears over and over again and my views were changed greatly after reading many pieces written by autistic people. I am in the middle of the book Loud Hands which I highly recommend – it is a collection of very moving essays written by autistic people. I wish that this book could be required reading for all.
            I now believe that the general population greatly misunderstands autism, and that it is extremely important for there to be a huge shift in societal views of autism. I agree with Ariane and others that we must presume competence. I believe that discussing a “cure” for Autism is both offensive and unrealistic. I believe that society should respect and embrace Autistic individuals, and that there should be a vibrant Autistic community.
            However, I do not agree that ABA necessarily presumes incompetence, and I also believe that ABA is an incredibly helpful and life changing therapy for many, including my son. My son is 2 and a half and is receiving 30 hrs a week of ABA. He communicates well and easily tells me when he is unhappy about something. He greatly enjoys his therapy and often asks to play with his teachers on the weekends. Whenever I ask him if he wants his teacher to come over he says “yes.” His teachers love him and treat him with respect. He is proud of himself for mastering new skills. Since beginning therapy he has become much more interactive, and he appears to get a great deal of joy out of this. He is laughing much more, engaging in social games, making jokes. I am incredibly confident that for my son the therapy has greatly changed his life for the better. The ABA that he is receiving is not out of the ordinary. It is through New England Center for Children, which is a large organization which is research based and uses ABA exactly as prescribed. Because of my experience with ABA, the thought of parents not considering this therapy because they believe it to be unethical makes me upset, because I believe that there are so many children who could greatly benefit from ABA.
            That being said, I also see how it is incredibly harmful to many. Some of the stories that I have read by Autistic individuals and their thoughts on the therapy that they received and how it effected them are incredibly disturbing. I am sure that if this had been my experience (like it was for you Ariane) I would feel differently.
            I do not see an inherent problem with ABA as a whole (please feel free to share other opinions about this). To me, ABA is simply teaching helpful skills by using a lot of positive reinforcement (mostly things like “great job, you’re so smart!” Which is not very different from how things are taught to the general population. I don’t see a problem with ABA objectives around communication and motor skills (which are the majority of the content). From my research, it seems that as long as this is taught in a respectful way, which it should be, these are things that most autistic people would like to excell in. To me, the question is whether or not it is ethical to have ABA objectives with the sole purpose of “normalizing.” These are the objectives such as decreasing stimming behaviors and increasing eye contact. I know that this will make me unpopular on this blog, but I do see both sides to this debate. There are autistic individuals who would like to fit in with mainstream society and believe in therapy that helps them to do this. Here is one example:http://www.jonathans-stories.com/non-fiction/neurodiv.html I also think that for many this can be done without being traumatic or harming ones self worth. I believe that my son is an example. He flapped before the therapy, and the words “calm hands” were used. Within one week of this intervention, his flapping almost completely stopped. He did not appear distressed whatsoever during the process, and was still smiling and laughing during therapy and requesting to play with his teachers. He never once talked about distress, whined, cried, or frowned when he was told to have “calm hands.” Now, 3 months later, it seems that he was forgotten his flapping days. After reading some blogs discussing the distress associated with being forced to have “calm hands” I have spent a lot of time questioning and thinking about whether this was distressing to my son, but I strongly feel that it was not. I also feel that once he is a little older it will be better for his happiness to not flap and stand out among other children. While in an ideal world there would be no judgments for these behaviors, this is our reality. As I mentioned earlier, my son enjoys eye contact and learning how to do this more was a positive experience.
            On the other side of the debate, I feel very strongly that these things should not be objectives for all Autistic individuals. If it causes someone great distress to stop stimming or to be forced to look into another persons eyes, I absolutely feel that they should not be forced to do it. Tara, I would love to here your perspective on this as a therapist.
            I am still forming my thoughts and opinions on these issues and welcome any thoughts about what I have written.

  56. Alen Deh Bozorgi

    Dear Ariane,
    It feel saddened reading how badly you have been impacted by your experience of dealing with certain professionals in the name of ABA. There are more than 90 million studies on autism and they all could be summarized such that: So far, we have the slightest idea of when it all started, what it is and/or where it is going. The only truth is that an increasing number of our children are having developmental patterns which are grouped together based on observation of their behavioral profile and are diagnosed as a “spectrum of autism”. The impact of such developmental problems are noted to fall within three main pattern of deficits in Social, communication skills and a persistent pattern of perseveration. ABA is only a tool for developing skills not a treatment for autism. After a billion or more hours of ABA the child will still have autism just like having Down’s Syndrome that was diagnosed more than 130 years ago. They too have been getting ABA since infancy and none of them, any one would be crazy enough to regard them as being treated. The reality is that close to 14% of all live births fall in the category of developmental disabilities, 5% of whom are known to have specific biological markers. For the majority of cases for which there is known biological marker such as cerebral paly or Williams Syndrome we have not been able to do anything to prevent or treat. Anyone who is selling treatment must be having snake oil in abundance. But they all, regardless of their diagnosis or the origin of their problems and degree of impact can benefit from ABA because it is simply an effective tool for building up their deficits and reducing the intensity, frequency and duration of their problem behaviors, provided that those who are delivering ABA are capable of doing so.
    I hope you can accept that I am not defending ABA. If I could collect all the tears which I have witnessed over the years it could form a river of pain to which I have been painfully privileged. I can speak volumes about the immense pain as well as the joy that has been caused by autism in my professional experience. For me autism is a problem of “knowing” for all of us and more of a “being” problem for the individuals affected by autism. We are not too far from the days of eugenics, or chaining, beating, starving era of neglect and out of sight-out-of-mind mentality. The humanizing effect of ABA is a fact that no one can refute. In all my years of delivering ABA I have never been able to rid anyone of their specific diagnosis, but that has never stopped me from helping parents in their moments of pain. The truth is that a large percentage of ABA contracts end up in failure for a number of reasons which have less to do with the ABA and more to do with the quality of professionals relationship with parents.
    I will be available to lend a hand, to ease your pain and show you how you can overcome your painful experience and if you wish, I promise not once to mention ABA.
    Regards,
    Alen.

  57. I am an ABA therapist and I couldn’t imagine ABA harming a child. ABA is a lot like teaching, but using different methods. Maybe you didn’t have competent people serving your family. Not all providers are the same. It takes a special person with a great education and a lot of training from a competent BCBA to become a well-rounded therapist. I do not think that ABA works for all families, but it is individualized and I have not come across one family who did not benefit from the services that I provided. I hope that you do not see ABA as something that is lacking or a failure because it is scientifically based and it works. I have taught non-verbal children how to communicate. I have eliminated self-injury and other severe problem behavior. I have helped children cope with different challenges and learn very important skills. I thrive on the fact that my clients make so much progress. If my client and/or their family is not “on board” with treatment and/or does not appreciate the services, then I do not have a problem with terminating treatment. It takes everyone working on a team to get the results that are desired. I in no way hope that you think that I am stating that you lack as a parent or did anything wrong. You may simply have had a bad experience or ABA was not right for you and your family. That is okay. I just think that it’s very important that you are well-informed before you state that ABA does not work or is not effective.

    • Alen and Casey – Since both of you are ABA therapists, I am directing this response to both of you. First, thank you for reading this post. As I wrote, this was our experience. Sadly it is an experience that a great many people have related to in the last year since I wrote it. I have closed this post to further comments as I continue to respond to comments like yours with the same words – please read what Autistic people are saying about ABA. Ido Kedar, (I have added a link to his book at the end of this post) has written a book that anyone who is entering the field must read. He is a non-speaking, Autistic teenager who communicates by typing. He is but one, of a great many who are now speaking out against ABA.
      Wishing you both well.

  58. Seems you were given some insight into the ‘real’ attitudes, I.e. the realm of the unconscious. Since the vast majority of ‘thought’ ( don’t know what else to call it…) happens apart from consciousness, one must ‘look for clues’ in behavior and ‘opinion’.
    This was shown by the speech regarding Emma’s supposed “choice” to not ‘progress’: 1) all action is under volitional control, including supposedly involuntary functions, much as if “the law of attraction” were indeed fully true.
    2) to be autistic is the ultimate expression of (spiritual) evil, I.e. ” all autist are demons” in the minds of their Normal betters – and hence deserve all manner of “witch-doctoring” in order to get them to become ‘Normal’.
    3) the ultimate expression of Normal is to know one’s place in the social hierarchy; and that means permitting one’s Normal betters to do with one as they feel inclined. ( Note: this is a near-universal matter; it is not limited to autists). However, when one is a ‘devil’, that means one is Supposed to be an especially adept ‘mind-reader’; and, as ‘devils’ are “spiritual” beings, they will only respond to (spiritual) violence. – hence the past treatment of “Changelings”, and the current punishment of autists.
    Finally, this behavior – on the part of Normal people – is a mostly instinctual matter, and happens mostly apart from conscious thought. That was why you initially ewent along with the “witch-doctors’ – until some other matters took precedence… Matters more learned than instinctual.
    For that, I salute you. It is hard work – ongoing hard labor – to go against the ‘magical ways and thought’ of instinct operating in the unconscious, and consciously choose to fight both your own instinct and the instinctual prejudices of those around you – so as to see the truth: Emma is a young GIRL, and you have a duty to Her; to help, and not hinder, to protect, and not crush; to give, and not Take, (or, to support, and not GRAB like a GRABBER)

  59. Just a quick reminder, comments on this post and for this post ONLY have been CLOSED! Thanks everyone. There are plenty of other posts on this blog you can comment on if you feel so compelled.

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  62. Reblogged this on Melissa Fields, Autist and commented:
    I am against ABA because it treats us as if we are defective……and it is done by those who are not even Autistic in the first place!!

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  66. I participated in a blog post commenting “extravaganza” recently, and a common argument the BCBA’s, etc. use is that we “all” use ABA every day on “typical” kids – parenting, school, etc., and THAT’s not abusive – as if it’s the same thing, and they do not listen to arguments. If it’s not “science” (i.e., “just” experience), it doesn’t count, and it’s not the norm. And of course, “that’s not ‘real’ ABA; I don’t do that; I don’t use aversives; I respect my clients – as if that changes anything…

    Also, they REALLY get pissed if you tell them that ABA is inherently abusive. I’m not a professional in this area, just a concerned family member and signal-booster. I’m trying desparately to find some “scientific” articles that show them where they are wrong about the foundation of their “treatment”.

    They would probably find a reason to discount the science anyway, but if there’s some science out there, I’d love to connect with those links if anyone can share them.

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  69. Thank you for this! I did the mainstream ABA with my son at almost 4 and it was so physical, holding him down at the table by his thighs, arms or hands. Wiping his head back to look straight. 3-4 hours at a table every day. Finally I had enough and threw them out of my house. My son had regressed in those months and started things like pinching and biting which he never did before. They also used terms like manipulative and severe behaviour problems. They blamed him and said he was evil! But after giving my son 3 months of nothing but is bonding, his new behaviors were gone. And then we started RDI and he started to talk! ABA is not the only way! Everytime I think back to what I let them do to my baby while I sat in the next room I will never forgive myself 😦

    • Hi Maggie, I had to close down comments on this post because of overzealous attacks and I couldn’t keep up with the necessary moderation to keep this a safe place. Seeing your comment I will tentatively remove the warnings and allow comments again. I may have to close to comments again if ABA proponents begin to attack. Thank you for your comment. I’m sorry you and your son went through this. I know the feeling of horrifying, even crippling guilt for having allowed one of my children to be treated this way. I know the awful feeling of wondering how deeply this experience has scarred her. I learned a great deal from this and am much more careful moving forward.

  70. My daughter was 2 and a half when we started her ABA program. She ate sand, flapped her arms, contorted her body and fell to the floor in a rage when we tried to get her to do something she didn’t want. Her ABA program came with a “curriculum” of skills that we would work on with her so she could begin to do things for herself. As she learned to do new things she wasn’t practicing the symptoms of autism as much. Eventually we didn’t see the symptoms much at all.

    There was no disrespect in the process. Not many weeks after we started teaching her she would go running to her teachers, not from them. We then learned what kinds of support worked for our daughter. We were then able to support her similarly on similar issues and not have to figure everything out from scratch. We love our daughter no matter what, whether she is sick, healthy, or with a disability. We didnt have to love her symptoms to love her. I don’t think we are unique parents because we wanted our daughter to be able to take in the world in in a less challenging way, or to be able to do things without us or her teachers having to do everything for her. Today, at age 7, her teachers do not know she had a diagnosis. We will be forever greatful to her consultant and teachers. We know some other parents who had different teachers that they weren’t thrilled with and we understand that good ones can be hard to come by, but I don’t think teacher quality and treatment process are the same thing.

  71. Thanks for writing this article. My son is not on the autism spectrum, and yet he shares a lot with those on the spectrum, to a somewhat lesser degree. When he was a toddler, every single transition was a nightmare. He was speech delayed, and still jumbles up words now and then, especially when he’s tired (he’s just 13). He is extremely sensitive (I’ve learned to know his gifts about this), and was diagnosed with Sensory Processing Disorder. And he happens to have learning disabilities, anxiety and ADD. One thing I grasped about him when he was a toddler, thanks to stumbling upon a parenting teaching (several books, etc.) called Positive Discipline, was to look underneath the behavior to see what was causing it. Then, address that cause instead of trying to change the behavior. Working with my son in this way has totally saved me/ us. Learning from OT about things like sensory diet to help his sensory system, made a difference. About 3 or 4 years ago I stumbled upon Dr. Ross Greene’s work and his basic premise that children (people) are doing as well in any given situation at any given time, as they can. If they’re not behaving the way you expect them to, it’s because they lack the skills or ability to do so. That’s just the tiniest snippet of his work, but I think he’s brilliant.

    Coming from the assumption that my son does the best he can in the moment, and looking at causation for his behavior has been such a gift for us. He has made so very much progress that every now and then he blows me away. Have I done therapies with him? Heck yes. Speech, occupational, physical, vision, cranio-sacral, mental health counselor, and a Pranic Healer. Quite honestly, every one of these (except maybe the mental health counselor) helped. The thing that made the biggest permanent change for the better was the Pranic Healer. I noticed distinct changes in my son about a week after each session. He would have less difficulty and have fewer meltdowns. He was more content and able to just be himself. Another therapist I discovered a few years ago, was trained as a speech therapist, but stumbled into another way to help children with autism, is Suzy Miller. I believe her work is ground-breaking and people who work with her see real positive changes for their children (and themselves). She wrote a short book, Awesomism, telling her story. (suzymiller.com). Thank you again for this post. I love your perspective!!

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  73. It would be like giving a flutist a box of reeds and expecting said flutist to use them.

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