Yesterday I quoted Ido Kedar, whose book, Ido in Autismland is his account of what it’s like for him as a non-speaking, Autistic, teenager. The quotes I used were specifically about his experience with ABA, the acronym for Applied Behavior Analysis. (Ido also has a blog of the same name.) A couple of people accused me of “falsehoods” and spreading “inaccurate information”. One person wrote, “I have never read so falsehoods in one post in my life. You clearly have zero understanding of ABA or the methods used in its approach.” Except that the bulk of the post he was objecting to was made up of quotations from Ido’s book about his experiences as an autistic person.
I asked for clarification and was told, “Falsehoods being projected do not need to come as a quote from you directly. This is your blog and you are the one responsible for providing accurate information. If you are going to show a quote from a student, then maybe you should also factor in that the particular therapist the student had was not a very skilled one or a qualified one at that.” Except to make such a claim that “this particular therapist was not skilled or qualified” would be inaccurate and something I cannot possibly know as I’ve never met the therapist being referred to. Evidently telling a lie is acceptable if it’s done so in favor of another’s opinion, however quoting someone’s firsthand experience is reason to be accused of creating falsehoods.
Another commenter wrote, ” The posts regarding ABA on this blog are grossly inaccurate. Unfortunately, the author of this post (and subsequent commentary) are so misinformed on the topic that they are not able to recognize exactly how inaccurate the information is. For those of us who understand the field, this can certainly be frustrating.” Except that so many being referred to and who were commenting are Autistic. In fact a couple of those who commented yesterday are teachers and work directly with Autistic children, one is a professor and teaches disability studies to special education educators at the university level. These are a few of the people this commenter believes to be “misinformed” and even went so far as to scold, “I urge you to become better informed on the topic.” It would have been comical had it not been so upsetting to read the condescending tone and level of rage this one post and comments inspired.
I’d like to clarify a few things… Let’s take ABA out of this, I do not care what the “therapy” is being called, if it is not respectful of the person it is meant to help, if it uses dehumanizing techniques such as electric shock, restraints, isolation rooms, repetitive testing requiring the person to master an action before being allowed to move on, it is not a therapy I will ever support. If a therapy is meant to teach compliance, teach someone whose neurology and sensory issues do not make sitting still simple or easy, who cannot listen, attend and make eye contact all at the same time, I question it’s objectives. If a therapy is looking to “fix” another’s neurology, make that person “indistinguishable from their same age neurologically different peers” I will continue to speak out against it and will encourage others to do the same. If the therapy in question does not presume competence at its core and does not take into account the person’s specific neurology and sensory issues, it is flawed. If these ideas are threatening to some, so be it.
So let’s stop talking about ABA specifically, because it seems to me the conversation continues to get derailed about what ABA is or isn’t, how some practice it or do not, how it has or has not evolved, instead, let’s discuss these other concepts. And if you believe something that goes against what I’ve just said, fine, quote me in the comments section, tell me why you disagree, back up your ideas with examples, preferably with words from Autistic people and I will happily listen. Accusing me of “falsehoods”, “inaccuracy”, being condescending, lashing out and making personal attacks are not comments I will allow through moderation.
Colin sent me this graphic, something I think we can all relate to…
Ib – I love you. I’m honored to have you as my friend. You are like a sister to me. Truly.
You hang in there. I am a young adult with ASD and, as a “consumer” (a ridiculous choice of words) of the PA Adult Autism Waiver, I was “treated” with ABA-based principles to help me “overcome” my “behavior issues,” which included picking at my skin for sensory reasons, meltdowns due to over-stimulation, and struggling with reciprocal conversations. It meant that my BCBA, who was very close to my age, essentially got to decide what kind of person I would be, in that she got to create my goals… then, in “supporting me,” I was pressured to, for example, invite a woman from my bible study over, nevermind that I didn’t WANT to do that. But, I couldn’t explain why that was (because I was quite certain the woman had some personal stuff going on, emotionally, and wanted space, but far me it from socially-inept me to know anything, right?), yet, I was not supported in typing, so, I was proverbially strong-armed into it. Also, when a provider discussed my history in great detail with a total stranger, thinking I couldn’t hear, and I told the BCBA that the aide broken HIPAA, the end result was that I was accused of lying, since they took the aide’s word over mine. Then, my goals included truth-telling, etc. I said fifty-two thousand times that I was NOT lying, so they finally acquiesced and changed my goals to “accurately making sense of and portraying information to others.”
This is a top-notch therapist at a supposedly top-notch, long-standing organization, too.
Can’t make this stuff up.
Oh L. I’m really sorry to hear this. How awful for you.
BOOM…. oh and *high five* 🙂
Now touch your nose. (Sorry, couldn’t help it.) 😀
After I read yesterday’s post, I expected “professionals” who practice ABA to object to what a person with autism has to say. Sometimes I feel like many people put themselves in positions of POWER to “help” those in need solely for an ego boost. These are the same people who reject that people who are different have thoughts, feelings, or ideas about anything, and especially about how they should be treated or therapized. THINK ABOUT THE PERSON…HOW DOES WHAT YOU ARE DOING MAKE. THEM. FEEL??????????
Thanks so much for commenting Laurei!
Isn’t it shocking that some of the very “professionals” that people employ to help their loved ones with autism have so little compassion for or even interest in the experiences of people with autism? I do appreciate your expanding this conversation beyond ABA, because it does happen with other approaches. Happily, more and more people- people with autism, behaviorists, psychologists, OTs, SLPs, and parents–are collaborating so that everyone understands that forcing someone to do something against their will, against their neurology, against their sensory capacity, against their very nature as a human being on this planet, is unacceptable. Voices like yours, Ariane, ring clear and true above the condescending and, sadly, sometimes cruel uninformed, old-school pro-aversives.
Thanks so much Lindsey
Ariane I don’t think these commenters are literally able to “stop talking about ABA specifically”
But thank you for recommending the book. I started reading it yesterday and everything changed very suddenly about how I see my boy. I’m still kind of reeling from the info 🙂 I’m sure he’s not exactly like Ido but I don’t care.
His school is supposed to be ABA based but they are very flexible and will try all kinds of things if I ask so we’re fortunate in that respect. I have to work with him to try and find a way for him to communicate. If I can, they are definitely open minded enough to implement it at his school.
Oh good luck, really, lots and lots of luck.
Can I butt in, grubbalski.
You say, “everything changed very suddenly about how I see my boy”. I think this is the crux of things in supporting an autistic child: its all about how we (and others) “see” the child, “our” child; and this seeing, to follow AZ’s lead as you’re minded to do, is a life-long exercise in refreshing and flushing and replacing any seeing of the developing autistic person.
I think this open-horizon always-evolving seeing, is what we ultimately role-model and communicate to autistic children, as their natural sensory-cognitive processing. Where we as supporters of their developing, run as fast as we can, dedicating and consuming ourselves on the way, to demonstrate and mirror and scaffold this autistic-specific open-mindedness to these our children.
Colin, I think I know what you mean but can you expand on this a little:
“a life-long exercise in refreshing and flushing and replacing any seeing of the developing autistic person.”
my name is Colin too 🙂
My saying this rather reflects how I see and sense AZ. I think that this is what AZ does in participating in sustaining developmental-support around Emma. Not only in what AZ does in a local-community/familial net or cradle around Emma; but also in what she does in a wider society, where that has woven other threads of community into the supportive net or cradle for Emma. To sustain what she is and does in this, AZ goes to what I think of as an excoriating and kind extremes, in being willing to consume and sacrifice herself in order to remain open-minded and learning about the autistic, and so as to be a fulcrum for service of Emma.
AZ is then different from me, so I can learn from her example. I’m an counter-offensive fighter, locked into a not-one-step-backward autistic mindset and life-practice. I’m then helpful to some others who are on the life-ropes across an autistic ground; I can go in alongside them and prevent them being defeated unfairly across mainstream presumption. In the midst of that it becomes difficult to step back from your identity; whereas AZ does just that in a useful way.
How we see any autistically developing and presenting child, only serves and has validity in the narrow moment when that perception arises; and that perception arises (and this the crucial thing) across (raw data) autistic sensing (of the autistic) that we have only poor instruments with which to grapple. We have to learn: how to rely on perception in the narrow moment in which it applies; and then how to dump it in succeeding moments, so as to prevent it getting in the way of direct sensing of autistic raw data (our sense of Emma’s experiencing, her sensing, her cognitive processing working off that sensing). Any seeing of the autistic is simply the scaffold or vehicle for a moment, and beyond that moment it is better melted down to see us again ferally open to simply sensing the autistic, something we need the whole of our being to secure.
Community is then a big help in doing this. Community puts your personal perception of a moment, into a bigger context, a context of the community integument to being. You come to and rely on your perception, but you have awareness of the myriad other perceptions helpfully in play. You are positioned to begin sensing the multifaceted supra-conception that community authors and sustains.
So I was simply putting words around the lead I see AZ as providing.
Colin I really really appreciate these kind words of encouragement and even praise. I am both humbled and honored by them.
What I hear you saying (in part) is something my friend and (Autistic) sister in arms, Ibby, has tried to explain to me (correct me if this is not part of what you are saying) that there is a “leaning in” that is required to bridge the space between autistic and non autistic being and neurology. Ibby was speaking very specifically to me about my distress over a year ago when I could not understand what my daughter was trying to tell me with what seemed to me to be such urgency. Ibby spoke to me about sensing my daughter as opposed to doing a word for word translation, and I found her suggestion utterly confusing. But over time I have begun to understand what she meant when she said, “you have to lean into Emma’s words and being.”
Does this make sense?
Yes. I love the expression “leaning in” to experience the wind of autistic being (as Heideggar might have expressed it).
Donna Williams well evokes this aspect of things.
I’ve had a similar experience with my girls. What we (our public school and EI services) have been doing is “called” ABA but looks nothing like what I’ve seen described here. And I credit that to finding this blog so early in our journey. We presume competence and respect the girls in every way above all. Thank you for helping me find this perspective!
So glad to hear Jessica
I also didn’t like the fact that said commenter said she would not read or come back, but kept coming back and leaving more comments, not just to the last post, but to others. That’s really disrespectful and disregarding your limits. If she’s a therapist, I would run the other way screaming.
I also discussed something like this recently in one of my posts: my experiences, good or bad, are mine and you do not get to pick and choose which ones you will listen to based on your comfort level. You do not get to tell me my experiences are invalid because you disagree with what happened to me.
I have only been “out” as Autistic a short time and already this shit is happening to me, so I can only imagine what having that thrown in your face all your life can be like. I’m not an idiot; I know what I experienced. If you don’t like it, work to change the world, don’t disregard ME.
Yeah, I didn’t know how to block someone as I’ve never had to do so before, so it took me awhile to figure out how, and while I was trying to figure it out she just kept commenting… Ah well. Thankfully I figured it out!
Really appreciate your comments, Kelly.
Thank you, thank you, thank you, Ariane, for your honesty. People are threatened by honesty. I have always been honest with people and that has gotten me into trouble over the years with those who feel threatened when I do so. Your honesty supports my daughter and I will share your excellent words with the professionals in her life. Probably will get me in more trouble, but she (and your daughter) are more than worth our honest support.
Thanks so much Stephanie. I hope it doesn’t get you in trouble!
I fully support your statements and the comments above. Having only been diagnosed as an adult I start to wonder if I was lucky not to be diagnosed.
Same here (diagnosed as adult). I don’t think it would have helped me education-wise, but personal life-wise, it would have been useful. Still, I’m thankful I wasn’t subjected to certain therapies.
Thank you for commenting Julia.
Julia, I have heard this same sentiment from a number of people now and I imagine I would feel the same.
The ABA my daughter received from 3-4 was respectful I felt (nothing like what you describe as the worst case scenario, no quiet hands, lots of breaks etc). She was able to point to items if they were flash cards on an iPad, but not on paper for a long time. I still hated the flashcard approach. I felt it was the easy way to do things so that is why the team did it. I quit because it didn’t seem to work, with very few (if any) goals met after a year. I have been pondering the “why” of it. I believe now it has to do with a gross misunderstanding of development, specifically development in a young child with lots of sensory integration things to work through. I also believe it failed because of a complete disregard for “readiness” for tasks and a focus all on deficits during the learning sessions. She actually lost skills (colors, shapes, etc) because they focused so much on her language lessons. Balance is necessary. A focus on what they can do, not just what they need help with, is a must.
Glad you’ve found what works for your daughter!
… I note that all of the commenters you allude to, Ariane, were basically doing a “no true ABA” type of argument of the form: ABA is always good. Person says they has bad ABA. Person must not have had True ABA.
It’s fallacious if I use it to pretend that all scientists are ethical (i.e., arguing that no true scientist would perform a study without consenting and informed subjects), and it’s fallacious here.
Speaking as a scientist: not all of us are ethical. Speaking as a chemist: not all of us are competent. Why is it so hard for ABA practitioners to admit the same, and say, “Yes, I believe that you had those experiences, and I’m sorry. How can I prevent it from happening again?” rather than, “No, those weren’t your experiences. You misinterpreted or you didn’t have ABA or you’re lying or you’re too incompetent to interpret your own life properly or I’m sure the benefit outweighed the harm even if you feel otherwise because I am The Expert and therefor, I know better than you what’s best for you.”
Instead of doing their best to emotionally distance themselves from their work so as to evaluate all evidence as impartially as possible, they treat their hypothesis as if it’s a religion and take personal affront to any challenges to it as they experiment on subjects too young to consent and deride and disbelieve former subjects who tell them their actions caused harm. They are scientists, yes. Bad ones.
Yup. It’s extremely disheartening to see the personal attacks and accusations that were flying around yesterday. And also sad.
And undeserved, frankly.
Even assuming that everything they were saying about ABA as it’s currently conceived and theorized is accurate, given that accounts like yours and Ido’s and Kassiane’s and Julia Bascom’s and etc are not exactly uncommon, wouldn’t it behoove them to investigate whether there’s something seriously wrong with current standard practice or current teaching methods? All but one autistic person I’ve met either online or off that has gone through ABA says the same thing about it: that it was traumatic and harmful. Accounts such as those are common as dirt. That suggests that it’s not merely an issue of a “few bad apples.”
That suggests, to me, as a person who never went through ABA at all and as such has no first-hand experience with it, that there’s something they’d want to take a look at here. Maybe ABA as a philosophy is fundamentally flawed. Maybe how it’s taught is flawed. Maybe people aren’t having their education updated adequately, or are refusing to adapt to new science. In any event, there’s something here that demands investigation. That they refuse so vehemently to even consider that it might cause harm and instead favor attacking and trying to discredit those who say it harmed them is alarming to me.
Reblogged this on WIN FROM THE SKY.
I don’t know I’ve read a whole bunch of stuff from your first post and man the posts just kept coming in. Has it ever occurred to anyone that we are all not even talking about the same thing. I maybe way off base here but this is the thing. In instances where a wrong has been done it a group of people, in anyway, the victims often still feel injured…. Ok I want to figure out how to say it so bare with me now. The person who was injured often can blame the whole but that doesn’t mean it’s so. Ok now here’s the other thing if changes are made because a victim is seen as right. Then when is the change acknowledged? In history it’s kind of happened time and time again. One group of people doing something not right to another group of people. The people express out rage. They talk about that miss treatment then something happens…. Change! But do we acknowledge the change. Every time there is a change made to the thing we rise up against do we see the change. ABA is done differently in many nations. In mine I can not say what came before. I can only speak to what is funded now. And I got to say we have never seen heard or thought of any of the crazy stuff you listed above. Restraints, chambers the whole bit. But I live some where different. I can not say this is not the norm in your country. I can not say that you are doing things in centers or at home the way we do. That therapy is trips to the park and sensory breaks. That sensory integration has been talking to ABA for a long time now and they have became friends. That stuff like how a person thinks and feels is now being respected. That the therapy has moved its focus to higher ground like life skills, social skills, SLP, OT. That 100% mastery is no longer a true focus on all aspects of a child life is a very big change. Change! It happens. But how does it happen. It happens when we have no longer fear acknowledging the wrong. But move forward. To say that a persons experiences is wrong is not the way to go. To say that this was never so is not the way to go. To me it’s like not acknowledging slavery or other atrocity. It happened. But do we blame the new generation for all of the miss deeds of the past. Do we never see it’s evelution. This thought is what I wonder as I read the crazy bickering and arguing over something that has clearly changed in many countries. It may not have happened in yours. I’m not sure. I just can’t say. But even though sometimes some countries hold on to old principles, practices or beliefs others don’t. My next and final thought to you. This war on ABA. How productive has it been to you. Has it achieved something. What changes we’ve seen has been brought about no doubt by a peaceful exchange of ideas and a collaborative effort to deliver to families the best therapy choices. Not because therapy is called therapy are you to be stuck in those terms. But the Canadian approach is not heal Autism or treat Autism. It’s lets help Autisic people gain the skills and tools they need to get the education they need. It is to be independent or to have enough independence so they can feel success. That can look like different things to many families. I think when your systems gain a different approach to humanity you might see the biggest changes. When people are just people. But change we must acknowledge change. This fighting… Why do you encourage it. It just won’t bring the change you wish to see. The hostility it does nothing. Writing posts and having people write attack posts what does this bring about. It does nothing for change in your system. Getting in there and rolling up sleeves actively participating in showing ABA professionals what a better practice is would be more productive. After all you can write a million posts the centers are still full. Change. If you want to see it in your country then you need to work together. You don’t have to believe in a therapy to want to see it change into a better model. If you want to see sensory then talk sensory. If you know that those in humain practices of restraint are used then get in there and see them removed. There should be no country using isolation rooms. Let’s get that very clear. Just none. Change keep fighting for change in your part of the world. I hope that you see that change and find that higher ground. What using a good model of ABA/IBI has brought my kids has ment the world to us as a family. But it breaks my heart when I hear that some where kids aren’t getting the good they are getting the ugly. Change.
Great Comment! Thank you for posting this. From what I see with my kids and other kids doing these kinds of programs right now, here in the US, I feel that there has been great change since the times when many of the adults, as well as Arianne’s own daughter, were involved with ABA. I can’t speak for the entire country. And I can’t speak for anyone who went through these programs in the past. I know that there is one center out east that was shown to still used shock therapy not all that long ago, and the videos that leaked to the press were horrible and things like that give ABA a bad name. Yes, in the past there have been practices that did not respect the individuals as they should have. In the past children with autism (along with many others who were different) were institutionalized and sometimes never came out. But I believe things have changed and still are changing, for the better. Children right now are benefitting from autistic adults speaking up, making their voices heard, and letting everyone know what it is like to be them. All of this is good. We need to listen to Autistic people, but the professionals and parents who are making the decisions about the treatment of young autistic children need to be able to participate in these conversations as well.
Well there’s a fine line between standing up for oneself and useless back and forth bickering. The first is a healthy choice of setting boundaries and the latter is a waste of time.
But aside from that, a great deal of change occurs when groups of people protest, push back and encourage others to question the current beliefs and ways of doing things. It’s not always pretty, but it doesn’t need to be, as long as it means there is change.
1funmum, I like what you have to say: about the process of change; and about the ins and outs of what saw change required/demanded, but not always acknowledged.
That being said, I still choose to fight in what I see as a war; and I understand myself as able to influence and change things through fighting.
I fight because, across my own autistic aspect, and across the realtime testimony of autistically developing children I engage with, they and I experience a mainstream as mounting an offensive against what we experience ourselves to be.
This offensive is not confined to ABA or behavioural thinking: but ABA (or the Lovaas variant which many refer to) has come to iconically represent in collective culture, for both proponents and opponents, that mainstream offensive; and behavioural perspective neatly speaks to the main features of that offensive. A useful debate and argument on this whole matter, can be had around making the behavioural and ABA the central-topic.
The children I work with, that I am most concerned about, are the ones who fight and go to war with the mainstream which would contain and redirect them if it could. I talk to them about what they intend, about what sensing and thinking sees them doing what they do. I then counsel them in tactics and strategy, as to how they might better fight, about how they might conceivably win the war they are engaged in.
Good outcome in what these children do (and I couldn’t get them to stop even if I wanted to) has to involve a socio-political/cultural resolution. These children have to get with education, and gain the tools and resources to go argue their case with the mainstream. What happens currently, as they reflexively try to win out, is that their presumption and perspective and reasoning and sense-expressive discourse and concept, gets minced by the machinery of mainstream presumption.
If these children get smarter and stronger across a prolonged development-as-war, as they most certainly do, and are then able to somewhat take the fight to the reasoning-corpus on which a mainstream relies, we get into a circumstance even more brutal than the mainstream default mincer. We get Beirut-style street ambush. And that style of ambushing well demonstrated by the ABA/behavioural response which AZ addresses in this blog-post and comment stream. It’s more grenade-throwing and sniping and RPG stuff: muscular attempted discrediting of what AZ has to voice; thinly veiled and unfair critique of her person and efforts as some whole. A back-system supported determination that AZ not pass through or survive on this public-domain street.
Beyond the mincer, this street-ambushing of strong autistic children who are reaching for self-expressive reasoning as good as AZ’s, happens routinely. These children, who nearly always survive such treatment, then not only have fighting and war thrust in their faces, they adapt into more powerful ways of taking the fight back to their mainstream enemy.
To use your excellent reasoning, I would suggest that we have to acknowledge: firstly that this fighting and war is taking place; secondly, that, in fact, while these children tend to lose out in every battle, they are not in fact losing out in their war. The collective effect of the war they sustain, sees a system change, because it does not have the resource to continue the war.
ABA and the behavioural flags a mainstream defensive line. Is that defensive line the Atlantic Wall, and a better outcome some way of. Or is that defensive line a desperate and thrown together Rhine line. Only time will tell. Till then I know what side I am on.
I think it is a touchy subject because when statements are made about how bad and harmful ABA is, those who practice ABA and those parents who willingly and happily/hopefully enroll their children in these programs, or actually build them from scratch themselves, interviewing, hiring and training the tutors, flying their BCBA in from out of state every other month as we have had to do, those people feel that their integrity, their intention, their care for and love of their own children or the children they work with is not only in question but is being insulted and they are being accused of horrible wrong doing. I would never say to anyone that their experience did not happen or that they misunderstood the experience. I myself was horribly abused for years by my mother’s second husband when she unknowingly married a predatory pedophile when I was 5 years old. No one can tell me that any child of any age, neurology, or ability misunderstands or mistakes being abused. Or even being disrespected and not considered a legitimate person worthy of the same consideration as everyone else. I would just like to point out that a lot of people go into the field of working with the disabled population not because they want to hurt or abuse anyone, and not because they believe that they will make lots of money. If money is the goal there are many faster and easier ways to try to amass wealth than to mislead parents and hurt children. Most of these people go into the field genuinely wanting to help. Many have some personal experience that influences them. And most of the parents who dedicate so much of their time and resources to doing what they truly believe is best for their children also genuinely want to help. I think that Arianne encouraging both parents and professionals to read the accounts of Autistic people, particularly those who were nonverbal in childhood and had to endure the false beliefs others had about their intelligence because of that is incredibly valuable. However I think that any side (parents, autistic adults or professionals) accusing any other side of inaccuracies, falsehoods, or purposely doing harm only descends into name calling and useless defensive posturing. I wish that there were a way that everyone could communicate about what is actually going on with and for our children and the adults, without this angry dialogue. I think my kids’ program is fantastic and I am personally involved with it every single day. I have also started giving the books that Arianne recommends to the tutors, students and professionals that work with my kids and ask them all to read them. That is the most proactive step I can think to make right now. There has to be middle ground where we can make things better from all sides.
I think discussion is terrific. I’m all for it. And for three and a half years thousands and thousands of people have come to this blog and engaged in discussions. Discussion about all kinds of hot button topics – violence, self injury, stimming, insisting on eye contact, language, what constitutes communication, medication, I’ve even talked about vaccines and never, never have I had to actively block people from commenting except on these posts about ABA. Interestingly it is not parents who disagree with me who have gotten ugly, it’s a rare few, who all happen to be therapists, people who are working with Autistic children. Children like ours. Most therapists however, are not like that. In fact the vast majority of people who read this blog are extremely thoughtful in their comments. I’ve learned an enormous amount from them. People like you and 1funmum, who write about your views and opinions, often telling me in detail why you disagree or believe differently; lots of people disagree with me about any number of things and there have been countless times when I rethought something because of the comments left here.
But in the end this is my blog. I come here, I write what interests me, and people read and respond or they don’t, but this is not a place where people can come and dump whatever vitriol they like, attacking, being condescending to others, and claiming superiority. I won’t allow that to happen. There are so many other places where that sort of thing is welcomed. This is not one of them.
I appreciate what you’ve written about your own experience as a parent. It sounds as though you’ve found great people to help your kids flourish. That’s wonderful. If it is encouraging them to be all that they can be, that’s all any of us can hope for.
I echo the kudos others have sent you. It takes courage to engage in this discussion, it seems! The suggestion some have made that we engage in peaceful dialogue around this issue would be great – in theory. It’s tough to dialogue with folks who are convinced that they are right, and don’t want to listen to the real experts – those who have experienced the therapy!
We’ve talked about aversives in this thread, but so far no one has questioned the use of “reinforcements”. Just because something gets a label of “positive” doesn’t mean the underlying premise has changed. For an interesting analysis of how reward systems backfire and are demeaning, I recommend Alfie Kohn’s book “Punished by Rewards”.
And I didn’t say ABA once! Oops, I just did…
Anyway, keep it coming Ariane and allies! Conversation long overdue!
Thanks for the kind words and the book recommendation, am adding to my ever growing list.
Coincidentally, Dean just commented on the last post – More on ABA – about being given gummy bears and describes how awful that experience was for him.
“if it is not respectful of the person it is meant to help, if it uses dehumanizing techniques such as electric shock, restraints, isolation rooms, repetitive testing requiring the person to master an action before being allowed to move on, it is not a therapy I will ever support.”
What’s frustrating to me is: how could anyone disagree with this? My sense is that, as you discuss ABA, autistics, treatment pitfalls, this quote above is what you are going back to, over and over…and it’s just right. It’s the right view to take, it’s a view that supports dignity and respect for individuals. So I’ve tried to understand the reactions from people and I think the ABA label just creates this enormous disconnect for some. ABA is something they are invested in, and they’re not able to take a look at the bigger picture as a result. To me, it demonstrates the dangers of believing in a system or program: adherence to a program leads one too far away from our connections with other people. It creates this mental block where one can no longer honestly engage with different individuals and different ideas. Or something, I don’t know. It’s confusing that your points here could in any way be controversial.
Thanks for commenting M Kelter. It surprises me as well.
Couldn’t agree with you more! And it’ s not only ABA as the very same disrespect can be seen in many “therapeutic” environments. It’s not an overt, obvious or even measurable issue and I think that’s where the disconnect comes from so many parents and professionals. One can not quantify how a technique “applied” to someone else makes them feel. Some people live by data alone, unfortunately.
Brava! Another great post..
Thanks so much Michael
Totally agree with the idea of taking the label out of things and just looking at the “therapy” or type of teaching. Is it respectful to the child? Is it helping the child learn to communicate? I have learned that labeling the type of help my son receives really changes how people look at his situation. If I say “My son sees a doctor that our pediatrician referred us to that is helping figure out exactly how his body works and how to help it work its best. He also has some people come over to the house to hang out with him and his sister and introduce some basic academics through play” I get one reaction. If I said “My son sees a DAN doctor and receives biomedical treatment and is also in ABA therapy”I get a totally different reaction. It is important to look past the label.
Sorry, I can’t tell if this is meant to be irony/sarcasm… ?
Really enjoying the discussion, Ariane! Well needed.
Oh. I took Beth’s comment literally! But I tend to do that…
Thanks for reaching out Beth, excellent points.
The Musical Autist supports you Ariane! Speak on!! Don’t stop!!! These past few days on your blog I believe will become historical markers.
Yes! Let’s take the “lingo” out and just talk about what we know and hope for in clear language…hopefully we may find we understand one another better that way.
My dear Ariane. I am sorry for the criticisms that have turn persona. They are wrong. There has been a lot of positive from your voice. Let me take a moment to assure you of some of the good of your posts to our family.
We do NO therapies. We’ve found them to be all based on the premise of “deficit” (whether it’s language, behavior, or relationship) and that is not the way to teach a child. Because of you, I learned a positive label — “presume competence,” which I find very similar to the idea of high expectations. And it gave us the confidence to reject the professional recommendations of speech therapy and training in favor of teaching my little girl academics, providing access to communication, and believing in her. The results of that is that she is confident, learning, communicating, and happy. She is learning that she is capable and not broken. In a world that is difficult, her internal well-being is paramount because she will need that strength and that confidence. There has been a lot of growth and change in our kiddo. And it is credited to her as a growing developing individual.
All children grow and change and develop, and it is sad to me that often a child’s development is credited to “therapy” and not to the child’s natural development. It is another way that the medical model dismisses the autistic person. All good must have come from therapy and all negative experiences are just bad therapy or blamed on the child with added labels of performance. This notion is infuriating in that it credits nothing to the autistic child or adult. It is an imbalance in power that puts it all in the hands of the therapists.
So, Ariane, thank you. Your posts have been thought provoking and positive. And they shed light on some things that others would like not to think about. The intention of professionals to do good is no excuse for the harm that is done. Our children need patience, guidance, and accommodations for those things that are difficult. And really, isn’t that what all children need?
Dee, thank you so much for this comment. I really, really appreciate it. Really. Cannot express to you just how much. Thank you for saying this.
Love your blog. Having trouble getting posted. Check out my blog, runningoutofautism.com I have a son, age 12 with autism and am writing a memoir. One of my posts is a critique of Bettleheim and Lovaas as characterized in the memoir, Boy Alone, by Karl Taro Greenfeld, rich in autism education history but problematic to say the least–Mr. Greenfeld is no authority on autism treatment that’s for sure. We’ve done Son-Rise since Noah was 9 and it is like anti venom to the toxic forms of ABA.
Thanks so much Brian. I’ll go to your blog and take a look!
Oh I had such trouble with Karl’s book. He is such a gifted writer, just incredibly talented, I would read anything he writes, but Boy Alone was tough. I wrote about it here – https://emmashopebook.com/2012/06/08/be-honest-and-why-that-often-hurts/
Still makes me cry just thinking about that book, which I guess says a great deal about Karl’s writing and the power of his words.
Cheers to this Ariane. Obviously there must be those professionals, organisations and parents out there who, when you listen (or read) the stories of autistic adults do attack autism with that kind of aggression and disrespect that aims solely at eliminating it. Your voice, and any voice that speaks for acceptance, understanding and life with autism, is uncomfortable for them, as along with the reports of more and more self-advocates, these voices question and demand new approaches. I am not surprised you got attacked on your own blog and on this subject.
I knew nothing about ABA (my son’s autism was not discovered in early childhood) but actually almost applied for a job as a layman therapist for an autistic toddler (in Australia, parents organise this in combination w professionals, to save money, obviously). This was about 6 month ago. I was interested at first, then they explained to me what it was all about (there was a training weekend in preparation). I still don’t know MUCH about it, but my gut told me things can go very wrong when you impose a 20-40 hour WORKING week on a 3 year old. I did not want to be part of it.
I have read things since then from autistics and professionals alike, that confirm what was only a vague feeling then. There is certainly different forms of ABA. But the traumatic experiences of what is basically dressage or conditioning rather than a real breakthrough in how to make life easier for autistics seem very real to me. Good on you for talking about it, as others have. Good on you, as a parent, with a relatively big blog, to give a platform to autistics WHO KNOW AUTISM better than any professional, any parent!
Never mind those who snark at you, think of those who read, who might now think, who will advocate, question therapies, listen to autistic adults, heck, they might even listen to their own autistic child. This is a great blog, and I love the insights, the cross references to other articles, the interesting comments -all. Yes, its good to leave the door open for the undecided but for the type of commenters you describe…slam it in their face.
Thanks so much for the support and kind words of encouragement. Really appreciate it.
I stepped back from reading for a while – because we were dealing with our own challenges at home – but I really want to get on much firmer footing – I agree with Colin and Ib and everyone else who has iterated the need to be responsive to our kids and “lean in” to them.
This summer saw a rapid change in our kiddo, and I found myself struggling to figure out what is going on, dealing with people who disagree with the feeling of needing to figure out what needs or ideas he is desperately trying to communicate, and of teetering on the edge myself.
He went from being a boy who was described by his first teacher as Ferdinand – the kid who would rather be studying the flowers in the field – to a kid who is now very reactive, exploding into frustration if any of us shows the slightest hint of upset, screaming so hard he is giving himself petichia, and gets physical (something he’s never done before) – it took us so completely by surprise – we’re waiting on an ipad from school loaded with proloquo 2 go, and for me to get trained with it – and I am so grief-stricken with feeling like I have utterly failed this child…I suspect that some of it is puberty and the rise of hormones…but it has been a very difficult 5 months.
We were at a rest stop (during a trip out west to Yellowstone, etc), when the first real bad moment happened – and I’ll tell you that we had the station attendant standing watching us the whole time, and I have never wanted to scream at a stranger to go the hell away, but that was a time I did.
We’re pretty isolated up here from easily accessed help – though I did go to a special needs PTO group – and I hope that we can forge some connections there.
I’m so sorry to hear this. Sending support to all of you.
Pingback: Ido Kedar’s Blog and Emma’s Response | Emma's Hope Book
Hi I work in ABA and want to quit because I disagree with behaviorism, BF Skinner, and all that unethical nonsense. What is an alternative to this field? I don’t want to be homeless, but I would rather suffer physically rather than spiritually. Please help. I want to help autistic people