top of page
Search

My experience with ABA as a parent of an Autistic child

Updated: Oct 15, 2022

This article is intended for parents considering therapy options for their children and is intended to be a soft introduction into the critique of ABA.


When my daughter received her diagnosis, I was given a handwritten sheet of paper suggesting we continue speech therapy, start occupational therapy, and 25-40 hours per week of ABA--as much as we could possibly get. They also suggested a book. They offered me a parenting class and then told me it wasn't available any longer. So that was it: me, my daughter, my list of therapies, and a book title. They told me early intervention was the key to better outcomes. That meant therapies. As much as we could get for as long as we could do them.

***

Applied Behavior Analysis (ABA) is often called "the gold standard" in Autism therapy. It's really the only "autism" therapy reliably funded by insurance companies. Minus your co-pays and co-insurances, which may be substantial. Other therapies commonly used to support Autistic children and adults are specific to needs: speech therapy, occupational therapy, music therapy, animal-assisted therapies, cognitive behavioral therapy, and sometimes physical therapy for issues such as toe walking. Alternatives to ABA are few. Some are just other types of behavioral therapy, meaning they use conditioning techniques that are core to ABA. One such therapy is Relationship Development Intervention or RDI. Floortime is an alternative to ABA but may not be covered by insurance. It's a relational-based therapy that requires intensive parent involvement.

You should know that ABA is controversial and commonly used for Autistic children. There is no shortage of content available on this topic. I will share here an article that provides an overview. I will share briefly my concerns: ABA promotes masking or hiding Autistic behaviors, which is harmful; ABA can be coercive and forces children to ignore their needs and wants to comply, which damages autonomy and self-determination; similarly, ABA disregards consent. which put children at risk of being victimized throughout their lives; it also appears that there is no presumption of competence in most practices. Talking about ABA is difficult because it's a huge industry with many well-meaning people who want to make a difference for Autistic children and their families. And many parents will share how helpful it has been for them.

Autistic adults are generally against ABA. Fervently. Many call it abusive. Some call it conversion therapy for Autistics. When my daughter was diagnosed at age 2 after a regression, I was scared. I was told that early intervention was the only way to "save" her. That's what the research said too. So, I decided to proceed with ABA, but I took into consideration the critiques I read adult Autistics making about the approach.

We used ABA for my daughter for about 2.5 years. This was about nine years ago. She was recommended 40 hours per week. At our maximum, we did 18 in our home where I was present at all times but our usual was 10 hours a week. We had a very kind and intelligent supervisor (also called a Board Certified Behavior Analyst, BCBA) who was aware of the controversy involved in ABA and made efforts to avoid causing harm. When I described to her my concerns about the practices but also my fear that no therapy would be damaging to my child, we worked together on practices that I believed would mitigate risk of harm to my daughter. The BCBA was present in my house for 2 hours every week to work with my daughter, work the technicians who were there the rest of the time to review their data, and make changes to the plan. On more than one occasion, our BCBA told me what we were doing wasn't ABA.

I was intensely involved in her ABA. It was always her playing. She never sat at a table. Ever. They followed her around and did what she seemed to want to do interrupting the flow of her play by asking her to do a small task. Though lots of ABA includes food rewards, I was against this. The reward was generally praise or just continued with her play after she did the task. They never pushed her. If she protested, they stopped making the demand on her. Sometimes I had them leave early if she was having a bad day. There were no drills. We never worked to stop behaviors only to learn skills. These were part of what I insisted on because of what I had read about ABA.

This was an option for us because I was able to be home and present with her technicians who were open to direction and a BCBA who understood the critiques of ABA without defensiveness.

Would I use ABA again?
I wouldn't. I would have no expectation that I would have a similar experience with the type of provider we had, but also, I don't believe the outcomes were worth the time we invested in it. She was a recipient of care under Tricare and the Department of Defense, who authored the largest study on the effectiveness of ABA for Autistic children. They found that ABA is no more effective than no intervention. This makes me question the role of maturation in research on ABA which shows it to be effective. Maturation in research just means that the research subjects grow and change as a result of aging and maturing. A review of further research suggests this as well. There are plenty of Autistic adults who participated in ABA who believe that it hurt them causing trauma, fawning, and increasingly hiding their authentic selves to try to win approval from others.

What should you do about ABA therapy for your child?
I would never presume that I could make decisions for any parent or family. Your situation and child are your own. Your resources and circumstances are complex. I would ask you to consider your child's needs and your needs, the value of therapy, and what you want to get from it. The basis of ABA is to make Autistic children indistinguishable from their peers. There will always be a cost to teaching an Autistic child to hide who they are. I discussed masking in a blog post here.

There are some concerns in the research community about the quality of ABA and the research that has made it a lauded evidence-based practice. There's some research that shows a high degree of conflict of interest in researchers doing the science on ABA. These conflicts are unreported.

Imagine that one day your child will be giving advice to other parents on how to best care for their newly diagnosed Autistic child based on their lifetime of experience. Would you think they would provide advice that those parents should listen to? I hope so, and similarly, I hope you will consider the position of many Autistic adults who experienced ABA as children who feel passionately about not using this method for Autistic children.

Thank you for reading. I know you care about your child more than anything, and you are trying to make complex decisions based on the information you have. Just like I did for my own child before I knew I was also Autistic.
99 views0 comments
Post: Blog2_Post
bottom of page