Editor’s Note: Holly Rowe is a neurotypical parent of an autistic child and a guest contributor for The Aspergian, contributing her experience at the request of our editorial team.
My son was diagnosed as autistic in 2016, at two years old. As a first time mother, I felt very overwhelmed when he was diagnosed. I didn’t know anything about autism. He was also diagnosed with a form of cerebral palsy around the same time.
Due to his delays, was already receiving both speech and physical therapy. The psychologist that diagnosed him also recommended that we start occupational therapy. In addition to that, we were told to start ABA therapy to “increase functional communication, play skills, and reduce repetitive behaviors.”
I’d never heard of it, but I was eager to do whatever needed to help my child as much as possible. I was told that it was the only effective, evidence-based therapy for autism. I was a member of many online support groups for parents of autistic children, where praise for ABA was abundant.
Within days of diagnosis, I was contacted by his care coordinator regarding ABA. She provided me with a list of local providers to consider. I found a company with a website that looked promising, with photos of smiling children and therapists in a classroom-type setting.
I loved the idea of him receiving therapy in a clinical setting where he could interact with other children, as so many other providers only offered services in the home. Our intake meeting was scheduled quickly. During the assessment, my child played with a couple of therapists while I answered questions and discussed our concerns. Our goals were increasing communication, social, and adaptive skills.
Once the report was submitted to our insurance, we were approved for 25 hours a week of ABA therapy. In addition, we were approved for 16 hours of parent training per month. Due to the other therapies he needed to address physical challenges, we weren’t able to commit to 25 hours. We began with an hour of ABA each day, increasing to 2 or 3 hours per day depending on other appointments. The parent training, however, never happened.
In the beginning, I observed the sessions. I would sit in the same room, off to the side, or watch from the hallway through a window.
I was the only parent that would stay and watch.
A few weeks later when he seemed more comfortable, I would leave during his sessions. His initial goals were things such as stacking blocks or matching colors. New goals were added often, as he was mastering them left and right. I thought we had found a way to help him thrive.
Over time, it became clear that he wasn’t retaining many of the skills addressed in therapy. He was simply doing what was asked so that he could take a break and play with a preferred toy. I was assured that this was common, and they would add the previously mastered skills back in to his therapy as maintenance.
Before we stopped ABA, physical self-stimulatory behaviors (stims) were blocked by his therapist. Although his stims were harmless, we were assured that they interfered with his ability to attend to tasks during therapy. “Hands down” and “quiet hands” were introduced. It was at this point that he started developing self-harming stims, even pulling out his own hair.
We found out we were being moved out of state for my husband’s job. Having to start over again with therapies gave me time to reflect on our experience with ABA. Of course, it was recommended that I get him back into an ABA program as soon as possible after our move.
We received authorizations from insurance for speech, (physical therapy), OT (occupational therapy), and ABA. We started all except for ABA.
I have zero regrets about that decision. My only regret is that we ever did it to begin with.
Thinking back on the time he was in ABA, there were red flags that I missed.
His therapist asked to come to one of his speech sessions for the purpose of collaboration, and I agreed. She sat in one of his sessions, taking notes. The next day when we arrived at ABA– in front of a brand new RBT we were just introduced to, his BCBA expressed her disapproval of the way his speech therapist worked with him.
She thought that the session didn’t have enough structure or productivity. She asked me if I was happy with the SLP, and I made it clear that I was and had no intention of going elsewhere. The issue was dropped, but I didn’t appreciate being cornered in that way. It felt manipulative and unnecessary.
When my child turned 3, he was eligible for a developmental preschool program through early intervention. I brought this up to his BCBA, and she didn’t seem willing to even entertain the idea. She expressed concern that since he was starting to imitate his peers, he would likely pick up behaviors from the other children that could be problematic.
I declined the preschool program at their recommendation. Part of me felt that they knew better than I did. Prior to our move, my son received his AAC device. I was advised by his speech therapist to also have ABA use it, since he was receiving hours of therapy with them each day. They didn’t want to implement it since he was using PECs with them already.
Ultimately, they didn’t want to learn the system and help us get started with it since he wouldn’t be their client much longer.
So much for helping us with communication skills.
Shortly after we moved, I was still in a local support group. One parent asked about recommendations for an ABA provider. Another parent that I recognized from drop-off had advised against the company we both used. I sent her a message asking why she wouldn’t recommend them, curious as to what happened.
She told me that at the recommendation of her child’s developmental pediatrician, she was dropping her child’s ABA hours from 25 to 10. She was advised to put her child in both speech and occupational therapy, and she couldn’t find the time with the high amount of ABA hours.
The ABA provider advised against it, and she followed through with the doctor’s recommendation and reduced hours. Then, the provider dropped her child as a client and reported her to Child Protective Services under the accusation of “not receiving proper services.”
That was the final straw. I would no longer doubt my reservations or second guess my instincts about the harms of ABA. I thought that they cared about our family and wanted to help us, but it was clear that profit is what matters the most.
Around the time we were leaving, all of the children that went to the clinic with my son were being bumped up to 25 hours per week. I had heard therapists talking to parents about it in the waiting room. I’m sure that they would have asked us to do the same if we weren’t leaving, and I would have refused.
Would I have been reported to CPS, too?
At the time, I believed they were trying to help us. I would have gotten defensive and defended this “modern/good” ABA, as I see so many do. Hindsight is 20/20. My son has been out of ABA for a year now, and he’s a much happier child.
He doesn’t even have a behavioral plan in place at school. It’s not needed. He didn’t have some major regression like I was told he would. He’s a loving, stimming, thriving little boy.
Last but not least, I want to say thank you to the online communities of autistic adults for welcoming parents like me with open arms. You educate and support NT parents in a way that nobody else can, and I’m forever grateful.
You’re a great mom, trusting your instincts and supporting your son’s happiness. I’m so glad to hear that things are better for both of you.
That CPS thing is just horrible. Taking a child out of ABA does not equal denying them support. ABA is not mandatory for autistic children.
My sister has Down syndrome and she’s in speech and OT. She loves it, and her therapists are very kind and positive to her. My sister even practices her exercises outside of therapy and beams with joy when she’s told she is improving her skills. That’s what therapy should look like.
Thank you for your kind words ❤️
Yes, that was awful for them to do..it’s still hard to believe they would do something like that..just wrong.
I find it hard to understand, too, why people can think it is OK to harm others. Maybe they don’t understand what they’re doing. Whatever the reasons, the thing that makes a difference is people speaking out against it, just like you are now. You are playing a role in ending the wrongs.
We have a boy born in 2014 and have not had more than a couple ABA sessions (though not mandatory in Canada). I too disagreed with the direction it was taking and it’s been a couple years now and Cruz is a happy (stimming) but also progressing little dude. Sure he’s not communicating like other kids his age and he has his own ways of doing things but I keep giving him autonomy (like any other kid) and he keeps surprising everyone.
We do 30min. speech each week and he loves it but otherwise he’s just being a kid! I think this is all going to work out in the end. Keep up the fight.
You’re awesome, Chad. <3 Thank you for being a great parent.
Thank you for sharing 💚 sounds like you’re doing it right!!!
I’m not dealing with this exact issue, but it was well written and interesting and I’m trying to learn everything I can about ASD because I recently had an adult child diagnosed. The learning curve is huge.
Great Article! Thank you for sharing as we have been wrestling with our gut instinct against ABA and facing the “critics” of our parenting for choosing not to enroll our 2 year old in a 40 hour week ABA program with no formal therapists actually implementing the treatment. Any guidance on online support groups for parents? Our daughter is enroled in speech and OT therapies 2x weekly and thrives with play based/incentive therapy. Thanks again
I’m thinking that a lot of things have not changed since my son was young. I didn’t go through the public school system when my son entered school, as I was not impressed with their programs, support services or how they handled ‘discipline’. I conducted a lot of research and visited a lot of schools in-person and because the public school system is an advocate for one-cookie-fits-all philosophy (like our government) I didn’t feel that the public school system was a good, happy or safe place for my son. First of all, I do not particularly care for the overall mindset of most adult individuals working in the public entity. Most of them are not even nearly qualified enough to supervise and assist ASD youth as they do not have enough education and experience. Not all ASD people are the same, and not all people are the same. Many have failed to recognize that each person is a unique and fascinating individual, and instead of being encouraged to embrace this (like in the olden days during the era of existentialism) the programs and services have been developed around a ‘mold’ like set of rules. I’ve found, even in the past, that most staff, teachers, therapists and medical practitioners have no idea what you are talking about when you speak about ‘sensory issues.’ It’s as if they skipped over that entire book or course on sensory integration, sensory disorders, perceptual difficulties and they even dismiss the idea that it exists. Maybe they’re not teaching that in the colleges anymore and if they aren’t, it all boils down to money. I would never have taken my son for ABA ‘therapy’ as in most cases, a lot of these therapies do more harm then good! For some children, it’s just too much stimulation and this is easy to tell by how they are later; e.g., hostile, high anxiety, meltdown. I was lucky enough to find a Parochial school who’s principal was a nun, and there were two other nuns there as well. It was a small school with no more than 12 students per class and all of the staff had Master’s degrees (including the Sisters). They also allowed my son to get up and leave the classroom whenever he needed, and walk down to the principal’s office for his sensory break. Some days he had only his typical number of breaks…. 3-4, but some days it was as much as 10. They also had knowledge of ASD and embraced it, and the walls in the classrooms were more stark intentionally. The overall atmosphere was serene and quiet. He did very well there but unfortunately, the roads after (he graduated and moved on) were not as easy. He had an extensive IEP which had been developed while he was at that school, but most of the accommodations on it they would never do at other schools. Some places read his IEP and exclaimed “oh, we don’t do this here” and “we can’t do that” and you have heard (through the public school system ) of the school to prison pipeline down in the south, haven’t you? Most public schools label all of these children as ‘too much trouble’ and ‘too much time’. So they (at least use to) intentionally target the child and cause them to have outbursts or meltdowns so they could have reason to send them off to a sheriff’s camp, where they eventually would end up in prison. At least in the private schools, they will treat your child with respect, kindness and consideration and just simply ask you to please find another placement for him for next year, because he simply requires too much supervision. And secondly, a school or school board’s code of conduct or rules of discipline do not totally apply to a child with ASD. Many people with ASD are prone to hostile outbursts or sensory outbursts from time to time and are much more sensitive to intentional bullying and antagonizing. Well, remember that a person cannot be punished for a behavior which is associated with their disorder (this was in the ADA laws/ sec 504) so it is difficult, not only in the public schools but also in some private schools as well, to NOT have your child disciplined for one of their meltdowns. My advice to all of you is this; Get close to your child and get to know your child. Be observant of your child and get to understand what environments over-stimulate your child. Find a good neuropsychologist who has experience and/or special interest in ASD and have re-evaluations every three years. Look into specialized private schools and plan to send your child there if you can afford it. Hire tutors that are highly qualified (sometimes you can find really good ones through a specialized private school) or search the listing for teachers certified in Orton-Gillingham Instruction. My son had Dyslexia as well, and I found a very good tutor that was employed at a specialized private school. Try to keep the public entity out as much as possible and realize, any time that a school or program can apply for some type of federal grant to benefit themselves or their program they will use your child and do it behind your back.
As an ABA therapist i am saddened to hear that anyone, any family or child would be treated in any way that makes them feel abused. But i have to say there really is good ABA, i know because i practice it each day. I am not offended that others have had negative experiences but this is not ALWAYS THE CASE. its just not. Each day i treat the children i serve with respect and dignity. Each day im rolling with resistance, focusing really on rewarding positive behaviors and not giving attention to others. I understand that places like JRC and such have demonstrated that ABA can be used as abuse, but today most dont use adversaries anymore these techniques are old and antiquated not to mention just terrible. I personally dont even work on stim behaviors unless of course they are severly getting in the way of the child’s funtioning. And again all programs and work done should always be approved and wanted by the family
I have seen great and exceptional success in my work using ABA techniques when used appropriately. I would hate to think someone would just discount this therapy fully without exploring the good and the bad.
Have i seen people use aba incorrectly…yes.
But ive also seen other modalities used incorrectly it doesn’t mean we throw out and discount all the successful cases of children that thrive with this treatment. It means we need to revamp and modernize the practice of ABA, provide greater supervision, and use of course only humane and natural practices.
I really needed to read this. My baby girl (4 in October) has been in ABA since April. We only loved our first RBT and the two others that followed weren’t great. Our BCBA was okay. We started seeing rises in behaviors more in session than out and when the last RBT struck a final line we ended abruptly. I’ve struggled back and forth if it was ever right for her, she did improve a ton during those first few months with her RBT that we loved, but after her, it seemed she didn’t really improve much. We’ve had a few meltdowns here and there in recent weeks, but we’ve come to see that in most of those, there’s a physiologic need present and underlying that she can’t quite communicate at the time. During session, I deescalated far more than the staff ever did which was so frustrating when they kept wanting to pile on more hours.
I love my baby and I would do anything for her or her siblings. Does anyone have great recommendations for support groups? I read horror stories about aba and how autistic adults hated their experiences in it. The last thing I want to do is cause her distress, I just want to be able to reach her and connect with her to meet her needs the best I can. She’s currently just in ST and we love her new therapist for that. Thanks!