An Anecdotal Survey

ABA is the first treatment recommended by pediatricians when a baby is diagnosed with autism. It is often paid for by insurance, school districts and other sources.
It covers lots of hours.
It gives parents a break.
Who benefits from all this effort? And how much does it actually help?
I have observed that it is big business, to the tune of billions of dollars a year.
I have seen young practitioners open agencies of their own with only a few years of experience.
The demand is high.

So I want to do an informal, anecdotal survey. My personal experience tells me that ABA has been a source of suffering for a lot of nonspeakers- though perhaps others with different symptoms may be helped by the flashcards, the baby talk, and the “touch your nose,” BS. But for me, I get PTSD flashbacks just hearing the phrases, “High Five!” or “Good Job!” Thankfully, no one gives me a so-called neutral no anymore.

I know so many people now, and there are more all the time, who had years of DTT and ABA –to great expense and parental commitment– who once they reach the age of no return are just written off into “dummy-land.” In other words, too “low,” too “severe,” to be “cured.” Because, after all, “recovery” is the promised land and the parents of the kid that fails to recover during that “window of opportunity,” is then told that the kid just isn’t sufficiently cognitively with it. Sorry for the inconvenience. It only took a decade to figure out.

But lots of these kids type now and they have a different POV. They are highly cognitively with it. But motor “without it.”

So, I’m curious, what was your, or possibly your kid’s, experience with ABA?
How much did it help?
Did it drive you nuts, like it did me, or did you not mind it?
Please specify if the person who received the ABA is speaking or nonspeaking. I’d like to compare the difference in service satisfaction.

I’d love to hear your stories.

13 responses to “An Anecdotal Survey

  1. Great post and timely topic. Our now 15 year old son spent years in ABA matching red and green… until we discovered on our own that he was brilliant and trapped and desperate to communicate. He is non-verbal and started typing this year – he typed that he learned to read at 7 and that no one believed in him except us. He is showing the world now – much like you – what is really possible. Thank you for all of your good work – it is making a difference.

  2. Colin is 16, considered an unreliable speaker, started ABA therapy at 4 years old. I was skeptical at the time, that the tutors would spend a little bit of time working with him, and a great deal of time taking data, of which I wondered what they do with the data, how it can be evaluated in a helpful way. ABA seemed to be a trend, the highest regarded, research based therapy that I had known of. I thought that the tutors were caring, well intended people that seemed like family, coming everyday, spending hours at my house. Colin was used to their coming. I haven’t really discussed with him how he felt because he gets to type only a few hours per week. I tend to encourage him to do school work, creative writing, and have small talk with the communication partners. I will ask him at some point. I felt that he completed ABA, with programmed verbal answers and behavior that took a long time, if at all completely, to undo. Early on that was why I had regretted the experience. After he letter boarded with Soma, and typed with the communication partners, in addition to regretting it, I’ve felt guilt as well for letting it go on for so long, ignoring my intuition that Colin seemed bright to me.

  3. Ido, my son, Thomas, is 26 and non-verbal. When he was diagnosed at the age of two, we were told “We don’t know why, or how, or what to do….but his best chance is if you do 40 hours a week of ABA.” So that’s what we did. We spent a fortune, juggled two kids, and did hours and hours of ABA. Because Thomas’ body was not consistent, he was too ‘written off’. When I insisted on keeping academics in his school day, the school psychologist asked “Really, Mrs. C., where are you going with that?” Thank God we found RPM, we read your book, and now Thomas can communicate. I ask him all the time how he isn’t angry with us. Please keep writing and helping to save/change one person at a time.

  4. ABA equals Absolutely Baseless Actions for my 17 year old, non- reliable verbal grandson. How frustrating for him and everyone else! He was subjected to this from age 19 months when he was diagnosed autistic to age 11 when he started music therapy and ABC was introduced to him, thank goodness. So for the next 6 years he wasted every day at school which embraced ABA and considered him unable to learn and was actually instructed and supported and educated 3 days a week and all summer at his MUTH where they assume he is capable.
    His entire school history was a waste of time, money, energy, emotional peace. When finished at age 22 he would have a useless certificate of attendance and know how to empty every trash can ever made, such a waste!
    Fortunately our state(IN) started offering on- line education through 12th grade. He started this program and attends at his MUTH everyday where he receives the body/ mind connection support he needs. HE IS SUCCEEDING, and we are so grateful. Spreading the word, ABA is not for everyone!

    • Connie, we love seeing him growing in confidence everyday at Optimal Rhythms / ACCESS Academy as he relinquishes the verbal and motor loops that were established and reinforced every day in a school environment that presumed him “limited” and built his day around repetition and basic life skills training. He is soaring and learning to regulate himself, while finding his true voice. It is so fun to watch his excitement bloom with each meaningful lesson, moving him toward a high school diploma!!! It’s time to #rethinkautism and see beyond “behavior” to the movement differences that make it difficult for nonspeaking or unreliably speaking students to demonstrate their true competence.

  5. My son is 9, and has had very progressive ABA for years. When I say progressive, I mean he experiences none of the things many people rightfully complain about. Instead, it is always person-first, looking at causes. There’s no attempt to make him “non-autistic,” or to extinguish behaviors that he finds helpful (stimming, etc.). Instead, the focus is more on issues that matter more, like safety issues (e.g., when he was banging his head repetitively, or impulsively walking into busy traffic without looking). I do not see my son as a human who needs “training,” but rather, just like his neurotypical twin, a person who benefits from learning coping skills and tools to help him be his best self.

  6. My son is 11 and extremely limited verbal. He had ABA for about 5 years but our ABA was jumping in the trampoline all day which he loved. The therapists were young and energetic (and pretty which he liked) and his “programs” were a lot more natural. I think providers make a difference. When my son was about 8 I could see that he would start to look at me or the therapist for a prompt of how to answer. That was when I knew it was time to stop. For us ABA was very helpful and they taught him a few useful signs at age 5 to get his needs met (milk, more, candy) I feel certain I would not have been able to do this on my own. One quick note- you said one benefit of ABA is that parents “get a break” but my experience is the opposite. It was much harder for me to have ABA since I was always participating or at an arms length away. I was able to see if my son was “over it” and insist we move on to something else. So perhaps thats one thing about ABA for us is that we didn’t do “rote drills” and his sessions were very active either in the trampoline or playing water balloons, etc. Thank you for all you do Ido. I really enjoy learning about your story and learning your thoughts on things. It helps me to better understand my son and to keep looking for ways to give him communicating tools.

  7. My wife and I went to interview an ABA school in our area earlier on when my son was younger. It was costly and the director talked to us making generalizations about us (we’re Asian last I checked) without even knowing us. It kinda irked me what she said. Suffice it to say we didn’t enroll him and I spent a long time wondering if I did the right thing (out of all the ‘wrong’ things we did). Reading your book and others’ stories affirmed that we did the right thing then. So just wanted to thank you. My buddy, Dr. Andie Libutti, reached out to you. I hope you get in contact with her and can forward your message to other parents. I know it’s not a first-hand experience of ABA but hope this helps.

    • Hello Nguyen,

      I am also Vietnamese, and I have a three years old son who has recently been diagnosed with autism as well. My son has limited speech (single words). He went through 3 months of ABA therapy at home through the state’s early intervention program, but he has “aged out” of that. I am not sure what he learned from ABA because it seems that he learned more from me and my husband than anyone else. We started reading about ABA, Early Denver, Floortime, and sensory issues and tried to help him via our readings. We got compression shirts, weighted vests, and tried to make sure that he has park/outdoor time every day. We got him to say single words to ask for what he wants by eating together every meal and giving out small portions at a time. We also got him to say “I want” by writing the words out, but the ABA therapists decided to replace the words by “fading the prompt” with a blank white piece of paper. How will he learn to say other sentences if he associates a blank piece of paper with “I want”? I never received an answer from the therapists.

      I am not sure what to do next at this point. Do I give him more ABA therapy? He is in a therapeutic preschool program at a local hospital where he receives both occupational and speech therapy for two hours, four days a week. He seems to enjoy going to therapeutic preschool way more than his ABA sessions. Any advice you can give as a parent would be appreciated.

      As an aside to Ido–thank you for writing the book “Ido in Autismland.” After reading your book (along with Naoki Higashida’s “The Reason I Jump”), I realized that talking is not the goal. The goal is communications! This fact alone changes how I look at my son’s autism. My goal is to help foster his ability to communicate–whether it is through talking or writing/typing.

  8. I researched ABA a lot for my non-verbal when he was very young. I even took some ABA workshops. It just did not vibrate with me. Thank goodness I did not do. I did do many things, most of which helped minimally. I am so blessed to have found the Davis Austin Approach in 2011. Now 7 years later, my son speaks, attends high school fully integrated and does judo and walk climbing. Ron Davis who developed this Approach was a non-verbal severely autistic individual who discovered a way through his autism. This approach assumes the genius within each autistic individual and allows them to individuate, develop their personal identity and understand social relationships. No drills. No memorizing. Just filling in missing life concepts and having the individual develop like all human beings do.

  9. Janani Ramanath

    We put my son through 2.5 years of ABA when he was newly diagnosed at the age of 4. The first 6 months were amazing!! New skills learned. New words! More willing to let us cut his nails etc. And then we started seeing the anxiety! Not wanting to do something brain dead, ad nauseum. Interpreted by the team as behaviours and defiance! They hoped the reinforcers but ran out of things that motivated him. Started holding every single thing that he remotely enjoyed (including his morning cup of hot chocolate), as a reward , conditional upon completing a task. His anxiety increased and the things he took pleasure in decreased. It’s horrible to see that in a 6 year old.

    My son had a deathly fear of bugs and one of his therapists worked for a couple of months over a summer as her practicum project. Her paper was due before the summer was over. She wrote her paper as if my son’s phobia was cured, while assuring us that she would continue to work on it for the rest of summer and it would in fact be cured by then. She just needed to say this prematurely for her paper. Guess what? We saw her maybe twice after that. And my son is still scared of bugs all these years later. There is a nice case study paper authored by her in an ABA journal about exposure therapy to bugs. My son is the (not named) subject who has been rid of his phobia supposedly .

    These were things that started to crack my wall of belief in ABA but we persisted because we saw other kids thrive with it and didn’t understand that we were potentially dealing with a different autism.

    By the end of 2 years, things seemed to be getting worse. When team leader talked about how she needed to ‘hit him where it hurts’, I finally realized we had had enough and stopped ABA. I thought that was a magic decision and things would only get better. Boy, was I wrong!! Turns out non- ABA therapy was worse in some ways because they had ZERO expectations. That was super frustrating to my son and he just seemed to give up. Even when we got introduced to RPM a couple of years ago, I didn’t really understand the nature of my son’s struggles until I read your book and blogs by other autistic people. There is at least hope in our lives now.

  10. ABA is absolutely brilliant!
    We used ABA and taught our dog to sit, wait, roll over and all sorts of good stuff.

    We were too told and led to believe that early intervention was the key when our daughter was diagnosed with severe autism. Hurry up the clocks ticking. Thankfully we didn’t do it for long and didn’t squander the huge amounts of money that these so called experts charge for teaching a handful of psychology students how to torture our kids.
    It was heart breaking for us to hear her so distressed inside that room and it was heartbreaking for the students who had to do it to her, but above all it must have been unbearable for S to have to endure it for as long as she did. The most ”success” we got was a handful pointless picture related words like “duck”or “ball” or the creme de la creme was “banana”.
    We got rid of the ABA and kept on the students who came to our house twice a week to play with her, but I always new there had to be something else we could be doing with her because she has shown us so often a real intelligence buried inside. We started RPM two years ago and have had some success with that with regard to communication and have seen all the disbelief in the faces when we tell doctors, experts, teachers such is their conditioning, but we have seen the sadness leave her and that’s the main thing and we are hopeful for the future.
    I wanted to thank you Ido for your books. I bought about 10 copies of your first book and given them out as presents last Christmas and will do something similar with “In two worlds” this year because they have given us a deeper understanding about living with autism and how and why S behaves the way she does which better equips us as her parents to deal with the stress of living with autism day to day without going mad ourselves.

  11. My son, David, was four when we started ABA in our home. He is verbal but at that time had only about 75 words he could say, and didn’t speak in sentences. The ABA intervention was the worst thing we could have done for him. The interventionists convinced me that ABA was the only way David could learn, and that he had to have lots of hours per week to “catch up” developmentally. We tried for 2 1/2 years, only to see his behavior deteriorate and learning stagnate. I kept hoping for a breakthrough, the “cure” that was promised. It was so horrible – the tantrums, the time-outs, the whole package of rewards and punishments, all for the purpose of making my child comply with their every request. It was traumatizing for us both, and something I deeply regret putting him through. He is a great kid and an interesting and thoughtful person. Rather than seeing autism as something to be cured, I’ve grown to appreciate David unusual, and often perceptive, perspective.

    David is now 11 and thriving in the public school. He has a 1:1 aide and is able to participate in his classroom for part of the day. Many of his behaviors related to sensory issues have subsided as he’s matured. He’s now the “weather man” at his school, announcing the weather over the intercom every morning. He wants to be a meteorologist.

    This is the boy that ABA interventionists predicted could not learn without ABA.

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