Controversy #2: Applied Behavioral Analysis (ABA)

One of the most controversial topics in the autism community is around the therapy called Applied Behavioral Analysis, or ABA. ABA is the "standard of care for autism treatment," per Autism Speaks, which, based on my last post, is to be looked at with a skeptical eye. Indeed, ABA (or behavior) therapy has long been touted as the most effective treatment for autism based on its results. However, the way that these results are obtained is where the controversy begins.

What is ABA?
From what I've been able to gather, Applied Behavioral Analysis is twofold: first, it's skills-acquisition for autistic children. It teaches them to do everyday things (such as teeth brushing, getting dressed, etc.) by distilling activities into micro-steps. Second, it's the eradication of socially-undesirable behaviors, such as not making eye contact, hand flapping, rocking and other stimming behaviors, as well more troubling behavior such as aggression or self-injury. The eradication of said behaviors comes through a reward/punishment system, though my understanding that the punishments (sometimes called aversives) are no longer widely used.

What's the problem?
To a non-autistic person, these things seem like really positive things -- why wouldn't an autistic child (or any child for that matter) want to acquire skills? Or be appear more socially acceptable? In fact, we do this with neurotypical children all of the time -- we teach them to integrate into society using society's rules of what is acceptable, which would be saying hi when someone says hi to them, not picking their nose in public, etc. The conflict comes when doing things like forcing an autistic child to make eye contact can actually be damaging due to the sensory input issues that many autistic people have. Forcing eye contact when it is uncomfortable and punishing a child when they don't is a very dangerous thing to do. Ask an Autistic feels very strongly about this.

The controversy around ABA sometimes feels like it comes down to parents of autistic children vs. autistic adults who went through ABA. This post by an autistic woman was very eye opening for me. From the post:

Autistic adult: “ABA is abuse.”

Parent of Autistic child: “I’m not abusive and my child is benefitting greatly from ABA therapy.”

Many parents, myself included, will see what we consider to be progress, which actually means that our children look more "normal" since having a child whom you feel the need to explain to other people can be exhausting. We will be thrilled and chafe at any suggestion that we are harming our child. However, autistic adults, having undergone methods of ABA that include phrases such as "quiet hands" and being physically punished for not making eye contact, are understandably wary of subjecting the next generation of autistic children to what they endured. This is also a great piece on ABA from Jess at A Diary of a Mom.

But making your child look more normal will allow them to integrate into society more easily, right?
Yes, it will. But we also have to consider the costs of this integration. There are reports from autistic adults that ABA has caused depression and even PTSD, due both to their methods (holding flapping hands down in glue, for example) and also because the message that we're sending to kids when we tell them that they need to stop doing things that help them to cope and that feel natural to them, we are telling them that something is wrong with them and that they need to change. Constantly being told that autism is "bad" and needs to be "cured" can certainly create hopelessness and depression.

But ABA has probably changed and evolved since these autistic adults experienced it, right?
What I have been reading has indicated that there are fewer aversives (punishments) meted out for forcing behavior in favor of using incentives to encourage it, though aversives are still recommended for certain behaviors. The older style ABA also worked with children for 30-40 hours per week. That is a lot to put a 3, 4, 5 year old through (thinking about that much therapy as an adult would be a lot as well). Currently, there are many different types of ABA being practiced and it's important to know which type your therapist is using.

Are you going to put Elias in ABA or behavior therapy?
I'm currently in this space where I'm frustrated because we're waiting for his therapeutic preschool to start in the fall, but I'm also terrified of subjecting him to things that are damaging and it sometimes feels like there are so many choices to be made. We are currently going through parent training (thanks to all who have been watching our kids so that we can both attend!) in order to get him into behavior therapy, though we signed up before we knew that there would be an option at his new preschool for it. I had a conversation with a behavioral therapist there who likened what they do to skill acquisition for children who do not have problematic behaviors.

So in other words, Yes, I want him to learn skills! I want him to acquire the tools that ABA has to give him to communicate and to learn more independence (though he really is our most independent child). However, he does NOT need his behavior changed. As I've said before, he is a sweet, compliant, wonderful child and I don't want him to ever think that he's not good enough or that something is wrong with him. When he begins his new preschool, we will have a discussion with them to make it clear that Elias is not aggressive, does not meltdown, nor is he self-injurious. He does need skill acquisition in the realm of using the bathroom, brushing his teeth, and initiation (not to mention talking, but I'm not clear on where the intersection of ABA and speech therapy lies), but we are not interested in making him "look normal" for its own sake. I have also said before that he doesn't stim, but the more I think about it, I realize that when he's happy he runs back and forth in our house, laughs, squeals, and is basically the vision of pure joy and delight. And I would never want to take that away from either him or from our family.