We’re only in Week Two of Early Intervention and I’m already questioning it.
In a previous blog post, I alluded to my concern that ABA might be too punitive. But then in this post, I talk about our first therapist, J, who was just amazing.
Well, we now have three therapists that come to our home regularly and the third, let’s call her Mel, is giving me serious pause. As in, I ran out of work today like a crazy person at 3pm when my mom reported that M was in the playroom with Mel and 20 minutes into the 90 minute session, he started crying and saying “I want Mommy” and “I want Grammy.” My mom didn’t interrupt the session, since my dad convinced her they should be trusting Mel, who is a professional, to do the right thing. But my mom was upset enough to have chest pains and was visibly shaken when I got home. Now, my mom is way more sensitive than I am in general. But in this I don’t disagree with her—this is my two year old baby with special needs and making him cry is most definitely not ok with me on a visceral level. I mean, this was only his second session with Mel—should he be crying already? Shouldn’t she still be “pairing” with him (the term used for building the relationship, gaining trust)?
So while commuting home on the awful railroad train I rely on, I’ve been reading up. I’ve been investigating some actual Autistic people’s accounts of their own experiences with ABA therapy (and those of their parents) and some former ABA therapists’ experiences. And guess what? They’re overwhelmingly negative.
Here are some of the more interesting ones:
This one is an eye-opening (and close-to-home) account from the parent of a non-speaking autistic child about how the treatments they engaged were essentially selfish and detrimental to their child. Wow, just wow.
This heartbreaking post from JustStimming talks about her experience with ABA therapy as an abusive, controlling form of torture.
And this one is from a former ABA therapist who left the field (after being convinced that ABA was unethical). It is particularly interesting because it links to a zillion accounts by Autistic individuals about why ABA is so damaging to them (including the “Quiet Hands” one above). One quote from this article that really stuck with me is:
“Yes, the methods used in ABA are “effective,” but only in the sense that a lot of Autistic people who go through ABA come out looking “less Autistic.” That is, an Autistic child is likely to learn to suppress Autistic behaviors by going through ABA that has normalization at its roots. But that doesn’t say anything about how ABA affects an Autistic person’s self-esteem, emotional state, and view of the world. It doesn’t say anything about whether ABA is ethical. If we’re measuring whether ABA helps Autistic people feel safe, accommodated, and accepted in a largely neurotypical world, then it’s very ineffective, according to the overwhelming evidence from the Autistic community.
Here’s an example. If someone beat a child to prevent him from doing something they didn’t like, he would probably stop doing it, and you could then say beating is an “effective” method. They could even take data as part of a scientific study to show you that their child’s behaviors decreased after they started beating him. But obviously, that doesn’t mean anyone should beat a child. That doesn’t mean it’s not abusive when a child is beaten. That doesn’t mean that child will grow up feeling healthy and happy about who he is. Abuse is never okay, and science cannot address the ethics of a method.”
So now I’m left wrestling with the question: Am I putting M through all of this for him, or for me? As his mom, it’s my job to make the best possible choices for him—to protect him from the wide world of people who can’t ever love him and care for him as much as I always will. Am I being a sheep by blindly following the “research-based evidence?” Or is this like leaving a child at day care? Do you rip off the band-aid and know that after a few good cries they will fall into the routine and stop calling for you?
I honestly don’t know. This is all so beyond my experience. All I do know for sure is that my job is to love M like crazy; to make sure he is happy, healthy and as well-equipped to live independently as possible; to keep him safe; to make sure he has a sense of self-worth. He doesn’t need to be the sharpest knife in the drawer. He doesn’t need to go to college. He doesn’t even need to be able to work at a table in a classroom in order to achieve this. Is ABA abusive, or is it setting my child up for as “normal” a life as possible? Or both?