Last week I wrote a post, Autism “Experts” about how I used to attribute any action or sentence uttered by my daughter as evidence that whatever therapy or treatment we were employing at the time was “working.” It was my way of staving off the persistent fear that if we were not intimately involved in a constant barrage of therapies, she would make no progress or whatever progress she made would be less, than if we devoted every waking hour to constant involvement and interaction. Suddenly every waking moment became a moment we must engage, interact, teach and push for more.
We were told about the human brain and the small window when the brain’s plasticity is at its most optimal for learning. From the moment that diagnosis was handed to us, we felt we were in a race against time. Any time we sat down to read the newspaper or took ten minutes in our daughter’s presence to relax and just be in each other’s company without “working” with her was reason for guilt and the feeling that time was slipping away from us. The nagging worry, if only we did more than we already were, she would be better served, is one I remember well and can still feel the residual stress of.
I want to clarify a couple of things that perhaps were not entirely clear in last week’s post. I do not believe an autism diagnosis means we sit and do nothing to help our children, but I believe there must be a balance. What we did was detrimental to all involved and I do not encourage anyone to follow in our footsteps. All our hard work, the round the clock therapy, (more than 40 hours a week) the training, the evenings and weekends spent taking over once the therapists had gone home, did not ensure our child’s brain was rewired. She was not mainstreamed within a few years.
This idea, popularized by the book, Let me Hear Your Voice by Catherine Maurice was NOT our story. I do NOT recommend that book, in fact I urge parents to avoid it. It was the first one recommended to me by Emma’s ABA supervisor and it set us on a very painful road of discouragement and disappointment, but perhaps even more importantly and destructive, it put into play the belief that Emma’s neurology could and should be “fixed.” And it pushed us further away from any degree of acceptance and eventually embracing and yes, celebrating our daughter for the amazing, uniquely beautiful being that she is.
That early intervention is so often equated with ABA is worrisome to me. I hope this is changing. People suggest it is, but when my daughter was diagnosed it was a given. It was ABA or nothing. Agencies offered versions of ABA, but it was still ABA. My child was not helped by ABA. I would not have done it could I do it all over again. I’ve written about ABA before ‘here‘ and ‘here‘. I know many of you feel it has helped your child, many have written to me and described some version of ABA that bears no resemblance to the method used with my daughter. Evidently ABA has, in some cases, changed. The bottom line is this – Does it presume competence? Does it respect the child as a human being? Is this a method I would use on a child who was not Autistic?
What I would have done when my daughter was first diagnosed was OT. I would have enrolled her in gymnastics, trapeze school, swimming and I would have introduced her to a stencil board and AAC (Augmentative and Alternative Communication) devices. I would have begun using Proloquo2go and many of the terrific Grasshopper apps had we had iPads when Emma was diagnosed. And I would have begun working with Soma Mukhopadhyay. In an ideal world all of these things would be a given. All of these things would fall under “early intervention.” All of these things would be available to ALL families despite their level of income. These are the things that have proven to help my daughter. All children may not respond to the things she has responded to. But in an ideal world “services” would include an evaluation determining what things would help and a plan would be made.
In last week’s post I questioned those who are not Autistic and have little or no contact outside of a professional setting to those who are and yet call themselves “experts.” I was not referring to the many professionals who are intimately involved in the autism community (and by that I mean the community of people who are Autistic) who have dedicated themselves to helping our kids and us so that we can be, not only the best parents we can be, but also equipped with information that will help us help our children flourish. There are a great many of you out there, and to you I am incredibly grateful. To all those professionals in the field of autism who are not familiar with Autistic blogs, books or do not have have any Autistic people in your life who are friends and colleagues, please become familiar with Autistic people’s work so you can tell parents. Many parent’s first contact with anyone involved with autism, outside of their child, will be a therapist.
Please make sure parents know there is a growing population of adults who share our child’s neurology. Even if that means just giving us a list of blogs and books written by Autistic people. Ideally there would be programs in place that employed Autistic people, just as social workers, therapists, parent liaisons are employed. Autistic people who are interested in interacting with new parents and their newly diagnosed children would become a part of “Early Intervention.”
Ideally we would live in a society where we did not segregate those who were more profoundly affected by physical impairments and do not speak, so that all of us came into daily contact with those whose neurology was similar to our child’s as well as those with an array of impairments. Perhaps families with older kids who are farther along in the process would volunteer to reach out and be available to other families new to all of this. The point is that we could help each other more than is being currently done.
No family should feel they are alone, or feel the fear we felt or the terror and worry that dogged us every waking moment of those first years after my daughter’s diagnosis. Years we spent in a state of almost constant panic that we should be doing more, that if we didn’t we were losing time, that our daughter’s life depended on it and that anything less meant we were failing her.
No one, who is given a diagnosis of autism, should feel they are alone. None should feel less than or believe they are damaged or broken. No child should feel ostracized or that the way they process and view the world is “wrong” or “bad.” None should feel that because they are Autistic, they need to hide or feel abandoned by society. No one should be made to feel ashamed for the way they were born. No one. This is what I want to see change. This is why I keep writing. All of us can work together to create a world that embraces one another and encourages, rather than condemns. Each of us can play a small part in making this happen, by increasing our awareness, by accepting difference, by working together.
Emma's Hope Book 
You’re right all of us can create that world. I don’t agree with the all therapy all the time thing either if it’s all therapy all the time you start seeing your child as a project rather than a human being.
💕
I really appreciate what you’re saying, I know that feeling of never doing enough. I didn’t like the ABA approach, so despite it being the service of choice, and free to us in Canada, I decided to say no thanks to it, and I’m doing the Son-Rise Program with my daughter instead. There needs to be a choice, because every child is different. The thing is, some do lose diagnosis. I don’t live my life in hopes that she will, but I teach her as much as she’s able to learn. And I think what she’s able to learn is limitless. I think whatever it is you do, do it out of love and not fear, and focus on today not tomorrow. I would do that for any child, neurotypical or otherwise.
Emma and I ran into one of her early intervention therapists in the pool at the YMCA yesterday. I didn’t even recognize her but Emma was very excited to see her, because her memory is perfect, even with events and people she experienced as a two-year old. Hey, that’s just not normal!
I wondered what the woman made of the fact that Emma’s language was not more developed. Did it shake her confidence in the critical importance of early intervention? I admit to feeling uncomfortable when I thought about it. But it did not make me think we need to work harder with her education process because every second counted. A whole lot of seconds have ticked by in nine years. Emma is still autistic and always will be. Emma is still Emma and loves her life and is happier than any other kid I’ve met.
But I do strongly believe in early intervention–for parents. Parents need to be educated at the earliest opportunity, not by non-autistic self=proclaimed experts, but by adult autistics who really understand what that neurology is like and how parents can best proceed in navigating a very unfamiliar landscape. With love. Patience. Curiosity.
And wonder.
^ This. Thanks, Richard; and of course, thanks, Ariane, for yet another insightful and powerful perspective.
One more week… and then… Syracuse!!
What’s happening in Syracuse?
Marilyna – it’s the ICI conference where Ibby, Amy Sequenzia and I will be presenting and a number of people will be attending such as⬆ ‘dellantonio’!
Early intervention for parents! That is so spot on and a much needed resource!
Agreed!
Yes, yes and again yes to EI for parents.
“I do strongly believe in early intervention–for parents. ” Yup. Love that!
Thank you for another post expressing how hard these decisions are. I feel such concern over the false dichotomy in which early intervention is couched. There is room for judgement calls, even for hard choices. I’ve been a child who did not receive PT or OT because my parents considered that stigmatizing. I did, however, receive some very questionable psychiatric interventions because they were easier to do in secret.
One of my children benefited somewhat from OT, but when he plateaued, rather than gnash our teeth, we, upon suggestion of his OT therapist, simply stopped pushing. Years later, there is now spontaneous progress without additional therapy. One day of ABA was enough for my gut to scream at me to stop it (aided by child’s objection), and I’ll admit to the disastrous error of sensory integration therapy.
Long story longer, I had another child whom I put through some excruciating physical therapy starting in early infancy. It broke my heart. It affected our bonding. However, the alternative was multiple, even more painful surgeries.
Being a parent is complicated and nuanced. Rarely is a decision all or nothing. Results are not clear cut.
“Being a parent is complicated and nuanced.” This is so true, Bridget, regardless of your child’s neurology.
I can so relate to this.
Marisa had just turned three when she was dx’d. At the time, I didn’t doubt the diagnosis at all, she met all the criteria. And I basically remember being told, in not so many words, “Your daughter has autism. Here is a list of things you should do”. And ABA was at the top of the list.
Well, the problem was, we were poor. There is ONE service provider in our entire area who does ABA, and of course does not accept our state insurance. I recall going to one of those homeopathic places a year ago – they wanted her on a super restrictive diet, they wanted to do something with a helmet and her brainwaves, geesh, I don’t even remember it all. At the time, if I’d had the money, I would have tried it all. Every single bit of it. I would have flown to South America. I would have done stem cell treatments. I would have done ANYTHING to get my daughter back to the “normal” that she was “supposed” to be!
And the ironic part is that now, seven years later….we find out autism isn’t even her primary diagnosis, but atypical Rett Syndrome is. It took the dumb luck of me realizing we’d never had genetic testing done to get this diagnosis, and at least this time, we’re not doing anything we wouldn’t be doing otherwise. But it does mean that her future is much bleaker than a child with “regular” autism.
Anyhow, parents – we can’t beat ourselves up. We live in a society where everyone wants to make a buck, and cashing in on parents desperation is unfortunately part of what happens to special needs kids. Choose the RIGHT therapy for your child. One child with autism is just one child. They may or may not benefit from ABA, or all the myriad of treatments out there. Do your research. Choose Wisely. And love your kids for who they are because ultimately, that is what they need more than any type of therapy can give them.
“…love your kids for who they are because ultimately, that is what they need more than any type of therapy can give them.” How did you get so smart young lady? 🙂
How do you feel about DIR Floortime Model? We have loved exploring and using it. If you are familiar, I would love to hear your input. Post maybe?!:)
DIR is what Richard and I began doing directly after ABA. We trained with Stanley Greenspan while he was still alive. He was a brilliant man.
For me (and this is from my viewpoint as a professional) I see DIR as not just an “alternative” to ABA but as a method that supports the parent-child relationship and parents’ enjoyment of their child which is a far cry from ABA methods like DTT. Wondering if you and other parents see it that way? I’d love to see more parents aware of and choosing DIR in the beginning (after they’ve received a diagnosis). That may be asking a lot since I suspect for most parents ABA is all they hear about from professionals and the guilt that is provoked if they look in a different direction is probably great.
I believe that to cut ANY human being off as being unable to make a “useful” contribution to the human community is to diminish that human community. I don’t care whether the factor in the judgement on that person is autism, Down’s, sexual orientation or religious persuasion. We will find, somewhere down the road, that we have missed something vital. Or we will find that we are no longer human.
Agree!
I’m glad you wrote this. It is, in my mind, the central issue that gets in the way of acceptance for families with a new diagnosis to deal with. We used RDI and I stand behind much of that practice because it focuses on helping the person feel competent to make discoveries about the world and relationships. One quote of Dr. Gutstein’s that I love is: It’s better to do nothing than the wrong thing. So that’s what we did. We skipped early intervention because it didn’t feel right. We left OT and Speech because it wasn’t working and our choices of professionals were so limited. We homeschooled. We hiked, we biked, we cooked, we walked, we lived. I was scared every minute that I wasn’t doing enough but looking back I don’t regret just taking the time to BE with my kid. I wish there was not so much incredible pressure for parents to “do” things to their kids and for their kids rather than with their kids. My son is still greatly challenged by his autism but we have a close and loving relationship and I wouldn’t trade that for anything.
I’m still afraid sometimes. I still lose sleep occasionally over not “doing enough”. But my Autistic friends are the ones who remove my fears faster than any, simply by being.
This is exactly what we intend to do as well, Christine ~ good for you and your child and family bond .. our situation would be so much more ideal if well meaning family would politely butt out and allow us to be the parents who know our children 24/7 since birth. Thank you Ariane, also .. very inspiring and inspired.
Love the post. I did read “Let Me Hear Your Voice” and felt the same pressure you did, except that we had no funding for a program and it was also the same time our income dropped drastically, so we weren’t really able to act on what I read in the book. That way I think we avoided a bit of the pressure you went through. Though I did worry a lot because he wasn’t getting the therapy.
I know ABA can be terrible and it can be good, and honestly, around here where I live, I’ve only seen bad stuff. But I like Dr. Vince Carbone and the Verbal Behavior ABA people’s methods where they use the things and activities that motivate the child to help them acquire language. Those techniques have helped my son become more verbal and he enjoys the therapy.
I know what you’re saying about not looking at the children as flawed, but on the other hand, we need to give them the tools they need to communicate and VB can help do that. Also AAC is vitally important and should be provided to every child that needs it. It should be a civil right. I could go on a crusade about that!
That’s the thing that upset me most about our local school district. Almost all the children in our special ed classes were nonverbal or nearly so, yet they were provided with no AAC and it wasn’t worked on in class at all.
That really bothered me.
I literally read that book and believed that we were in for a couple of “rough” years and then everything would be fine. Now I’ve just redefined what “fine” means and we are!
If she had been fine after the 2 rough years, do you think it would have been worth it? That’s the quandary newly diagnosed parents are in. If it would “recover” their child (thus allowing their child to live a “normal” life), wouldn’t it be worth doing? It’s hard to say no to that possibility. Though I think the recovery rate is very low.
My son went from a PDD-NOS diagnosis at 2 yrs to a severe (according to school district – and I disagree strongly with that, though his teachers and aides thought it was accurate)/moderate (which I do agree with) autism diagnosis at age 6. Yet I’ve seen him make so much progress and he amazes me daily and continues to grow tremendously with our without therapy. Yes, like you said, they progress with or without the therapy, but therapy seems to get all the credit.
OT didn’t do anything for our son, and the OT therapists were some of the worst we had. But, again, our children are individuals and there are no cookie cutter solutions.
Anyway, I’m enjoying your blog, but haven’t read all of it, so I hope I’m not aggravating you too much by what I’m posting.
Marilyna – before I knew better I was willing to go to some pretty extreme lengths in the hope that my daughter would one day be “fine” except that she already was “fine” but I did have to spend a good bit of time rethinking what “fine” meant.
This idea of so called “recovery,” the cases of children who’ve “lost” their diagnosis… I can’t comment on these instances as I’ve never met a single child or family that this has been the case. I have read about them, but that’s the extent of my knowledge. What I do know without a doubt, is that my daughter is Autistic. Autistic means her brain is wired differently. It’s easily seen on one of the many QEEGs she has had over the years. Both my husband and I are no longer interested in our daughter changing her neurology even if she could or we could do something to her that would. I have worked long and hard to get to this place of complete acceptance, but it has been worth it. My daughter is beyond my wildest dreams and I could not be more proud of her. Interestingly some of the biggest leaps she’s made have occurred in this last year and a half when we finally were able to completely and enthusiastically embrace her.
Thanks for following up last week’s post with this. It is always interesting to hear what has and has not worked for different parents. I totally agree with getting ACC devices into the hands of non verbal kids as soon as possible. We have tried so many different versions for Tallulah and finally had a real honest-to-goodness breakthrough earlier this year with the LAMP app on a new ipad mini. I blogged about Lu trying the different devices and using the ipad mini over on our family blog here: http://babybabyracer.blogspot.com/2013_02_01_archive.html
Our big breakthrough was when she used the device to tell my husband that she doesn’t like his scratchy beard when he doesn’t shave. He came home from work on our ranch dirty and unshaven and wanted to give her a “kiss” (she lets us kiss the back of her hand or sometimes her forehead). It was pretty incredible. The first time she has ever been able to tell us something like that. Something that was not a request or an answer or identification of a noun or a hard fact. I can’t wait for the day we can teach her to type, but we are still working on letter and work recognition right now.
Reading ‘I am Intelligent’ made me really impatient for the day when she can use a qwerty keyboard. It was a hard book for me to read. Peyton’s abuse was not dissimilar to my own at the hands of my step brother and step father which started around age 6. The thought of those kinds of things happening to my precious and utterly innocent special little girls is so heart breaking. I read the book in one sitting during a flight from Phoenix to Philly. Thank goodness no one else was seated in my row. It allowed me to weep silently for 5 hours without anyone bothering me. That book also impressed me with the intervention that Peyton’s mother was able to do herself in the basement with the school desk. She obviously is one of those incredible moms with an educational background who was making real progress before the abuse completely derailed everything. What do you think of the intervention described in that book? It sounds somewhat similar what Temple Grandin described her own mother doing and to the type of ABA we are doing with our kids. Not to always harp back to new ABA being better than old. But my kids love puzzles and putting things together, so we use them a lot. Spacial relations and object placement are super important to Tallulah so we use moving things around and letting her make arrangements and connections between things to help her learn other skills.
Personally I have felt that the most important piece of the early intervention puzzle is encouraging parents and everyone around the child to find their motivation and interact with them in positive and reinforcing ways to show them that communication is worth the effort. When we got our kids their service dogs I felt the best part of it, besides how much the kids love and bond with the dogs, was that it gave my husband a new way to interact with the kids and the dogs together that they all really love and look forward to every day. The dogs are a bridge not only between the kids and other kids at school and strangers in public, but also between the kids and their Dad. He wasn’t a hands off Dad before, but because he works daily and even on the weekends, sorting out therapies and interventions have been my “job” with the kids and he was a little more stand back about jumping in and trying to engage them. Plus having some awesome, happy goldens hanging around the place keeps us all in good moods most of the time!
Ariane, very well put!
It takes a village to help your child be where he/she needs to be in life. We as parents are their advocate and should be their constant role model in life. I was alone for many years and my goal was to help others because it is not any fun being alone with a special needs child. Everyday I come across those homeschooling that have a special needs and they are trying to figure out how to help their child learn regardless of the developmental delay.
Children are our future and our goal should be making our child be the best THEY can be. 😉 Keep up the great work and hopefully those of us who share our experiences will help others not feel alone but feel there is support.
I have found in research and hearing many workshops the past 4 yrs is that I wish pediatricians were a little more educated in seeing the signs of special needs that are just not the physical aspects.
Blessings….
Again, every word rings so true to me!
Our Early Intervention was a sock in the face. I despised the methods of our speech pathologist and the idea of 40 hours of ABA sickened me. We opted out of most of it, all with the professionals whispering “You are losing valuable time! the window is closing!”
One day, our SLP took a call during a session. She listened and said, “An IQ of 170! Oh, *tsk* he’ll never be normal.” That one sentence changed my life. We are a high IQ family, but that did not trouble me. The idea that not being normal was a headshaking tragedy, disturbed me to the core. That short sentence pushed me further on the path I am today.
I am grateful for every word of acceptance you write.
“Please make sure parents know there is a growing population of adults who share our child’s neurology. Even if that means just giving us a list of blogs and books written by Autistic people. Ideally there would be programs in place that employed Autistic people, just as social workers, therapists, parent liaisons are employed. Autistic people who are interested in interacting with new parents and their newly diagnosed children would become a part of “Early Intervention.”
We parents are on a journey to understand and grow along with our kids. We have so much to learn from Autistic people to help us help our kids achieve their independence, however that manifests itself. We also owe it to our kids to tell them they are not alone.
Thank you for this post. It was honest and respectful, as your posts always are.