Applied Behavioral Analysis, or ABA, is the only scientifically proven therapy for autism. It is what all the professionals tell you to get. It is the company line. It is also a terrifying endeavor from my perspective.
The child physiologist who diagnosed D., his pediatrician, and multiple friends who work with special needs children through the school system all suggested ABA. In the early stages of getting D. diagnosed, I read about ABA and its verbal counterpart, VB. I felt comfortable with the premise. It is another application of behaviorism, which I am familiar with through my training of horses. Once we recieved our diagnosis, I worked with my insurance company to find a provider.
There are seven companies in the area that take my insurance. My first-choice-company was renegotiating with my insurance company and it sounded like the two did not have a great working relationship. I didn’t want to get involved with them just to transition to a different provider because they stopped taking my insurance. I scheduled a phone interview with my second choice.
The first step after selecting a provider is a series of assessments. Before that could start, however, we had to get approval from insurance. That took a few weeks and gave me time to research. This time, I read about ABA experiences from the people who have lived it: autistic adults.
This is where the fear started to creep in. I did not read any positive experiences. Every blog post I came across recounted feelings negativity. At best the authors felt marginalization and, at worst, they experienced PTSD. Despite the range of feelings, there were common themes to all the experiences I read.
First, ABA therapy’s attempts to “normalize” where highly traumatic. Things like mandatory eye contact, “quiet hands” (which means not hand flapping, a movement which is not harmful to anyone but can serve a self-regulatory function for people with autism), and learning to hug were examples of behavior modifications that were universally condemned.
Another issue was the reward system used by ABA. ABA uses motivating objects and other things to get a desired response. The more desirable the reward, the more desperate a person will be to get it back, the more likely the task will be accomplished. I read about meals, favorite teddybears, and even favorite subjects like writing, science, and math being withheld. Clearly, this differs from what other kids experience. Withholding screen time until a room is clean is not the same as withholding dinner until a child makes eye contact.
While normalization and a system of inappropriate rewards seemed pretty bad, the worst was lack of agency. In ABA “no” is not an option. The patient must comply with the request of the therapist. In some more benign instances, this led to the autistic person feeling belittled and stupid. In cases of mandatory eye contact and things like hugging, this amounted to a deep violation of the person’s body. The unintended lesson being that “you must let other people do what they want to your body even if you are uncomfortable.” This lesson in particular has terribly frightening consequences.
I was left wondering where the child’s advocate was in all these situations. What was the advocate’s role in all of this? Can I combat these terrible, unintended consequences? I am forwarned and thus forarmed. I prepared a short list of questions (see below) and determined what sort of answers would be acceptable. While the answers I got from D’s new case manager where not the best case scenario, they were acceptable and we proceeded with the assessments.
The first assessment was a parent survey. We’ve done a bunch of these at this point. I really dislike them. D’s dad and I often disagree on the answers and have to talk them out. I don’t really think either of us is wrong, we just see D at different times and in different situations. (D’s dad stays home with him during the day while I work. Then we swap and he works the night shift and I watch the kids.) Next was a home observation. I’m a teacher, so strangers coming into my domain and sizing me up is nothing new. However, having a stranger in your home observing your kiddo and partening is a whole different level of uncomfortable. Lastly, we did a (another) language assessment.
We are once again waiting for approval from insurance before we can start therapy. I’m not even sure the number of hours D will need. The only thing that was decided was to use PECS cards instead of signs.
Moving forward with ABA is has been a complicated decision. I read many horrifying things from recipients of the therapy. I even read horrifying things from former ABA therapists. But I also know my son and I know my own abilities and time constraints. I know that it takes a ton of repetition and consistency to teach him things. He is a very smart boy and wants to learn, but he does it differently. I am out of my depth and he should not suffer because I don’t have the knowledge to help him. With the help of his current therapists we are making progress. We are throwing strategies at the wall hoping they stick and implementing them with as much fidelity as possible. (Which, in all honesty, is not that great. There are only so many hours in the day.) ABA represents access to a person with experience helping people like my son. It represents 20, 30, 35 additional weekly hours of support for my son. D has minimal communication and cannot even express basic needs. He also has behaviors that could cause serious injury to himself. He needs more.
I hope I can protect him from the trauma. I can say “No, you cannot use his favorite toy as a reinforcer.” and “No, eye contact will not be part of his behavioral plan.” We can quit whenever we want. These are the thoughts that keep me going.
My list of questions:
- I don’t want to stop my child’s benign stimming. Is that okay?
- What do you do when a child indicates very strongly that he or she does not want to do something?
- How will you respect his agency?
- What limits do you set around the choices therapist/teachers/ect make in their selection of reinforcers?
Here is a link to a former ABA therapist’s post about why she left ABA. There is a round up at the end of many posts from autistic adults. I will add additional links as I find them.