A month or so ago, I noticed that every story I had told recently about my daughter was negative. We’d had some exhausting weeks–for her, illness exacerbates every symptom of autism, and her dad and I often feel that we’re banging out heads against a wall. Hypersensitivity, not eating much at all, not responding to our words, lashing out at other kids–all of these things accelerate when she’s even a little bit sick. But that wasn’t the only thing. I was tired out by other family members, in particular those who try to disprove the autism diagnosis by “just making” her do things she doesn’t want to do (which results in screaming, meltdowns, stress), or by responding to all of my stories with “all kids do that.” And despite minimizing or rejecting several possible interventions (like the ABA that our insurance insisted was the only legitimate intervention but which seemed to completely and repeatedly disregard our family and our beliefs), we were nevertheless in a backlog of interventions and attempts to make things better. She loves her occupational therapist and I so took her there often, but every visit resulted in a pile of paperwork and helpful suggestions and therapy toy purchases, none of which we could find time for. We were trying new playdate groups in hopes of creating a consistent social circle that might be comfortable. We had three mommy and me classes that she wanted to do, but getting there prepared, comfortable, in a good mood, and sort of on time required a huge amount of effort from both my daughter and me.
Writing this, it sounds obvious that we needed to slow down. Indeed my husband was already telling me that almost daily. But it didn’t seem like a lot–in fact the reason for being busy was that it seemed we weren’t doing enough. As someone who wants to do the right thing, rejecting 20 hours a week of ABA felt like something we needed to make up for. And everyone, absolutely everyone including people I love and trust deeply, responded to my discussions of the diagnosis and symptoms with ideas about intervention, whether or not those ideas were ABA. Not to mention the often wincing reactions of doctors when we say we’re homeschooling–I can still feel those judgmental eyes on me, and the only thing that satisfies them is that we do these mommy and me classes and socialize often.
Last night I got to have some time with adult friends, most of whom were mothers. And I found myself telling good stories. They were pouring out, and making everyone laugh. Most of these friends don’t know my daughter is on the spectrum because they don’t need to know. But a couple months ago I was exhausted, and my stories were more along the lines of “I can never ever listen to my own music or a podcast. I don’t know why, she just freaks out,” and I was tempted to tell them about the diagnosis just for the sympathy, just to explain that it is harder, it is different, it’s not just a tantrum I can ignore. But last night I found myself telling stories that made people laugh in wonder and comment on how great kids are. Like how when I get lost my daughter says,”Did you have to make a BIG U-TURN?!?!” and cracks up. Or how she is so excited that we’re pregnant and talks all the time about how she loves her baby brother, and wraps presents for him and saves things for him. Or how she’s been able to draw faces since about 21 months and has an incredible understanding of how things are made, how she wants to “drive mighty machines” when she grows up and build big buildings. Then last night, she came down to sing me a song she made up, “Tiptoeing down the stairs, tiptoeing down the stairs” and explained that she sings it when she’s done with her movie and needs to walk downstairs. She was telling me this while I’m going to the bathroom, and despite the interruption she also tries to be thoughtful about my privacy, so she ends these pronouncements but shutting the door for me and making sure it’s fully latched. And I can’t help but smile, because her creativity constantly amazes me and her efforts at caring and empathy are so sweet, so unique with her matter-of-fact personality. I found myself thinking, I have to remember this moment, that song, I can’t let this fade into the blur of toddlerhood.
Aside from actually slowing down–cutting out a couple classes and appointments so that we have time to really recoup and stay home and play every week–I think what’s changed has been my confidence. I’ve been reading a lot of autism self-advocacy–books and blogs–and it gives me a foothold to say no to the constant interventions. To say, I can follow her lead in finding ways to blossom in the world. Some of these accounts are troubling, like Julia’s beautiful and poetic piece “Quiet Hands” or Marie King’s piece on food, and make me so grateful that I can carve out our own path and a safe world for my daughter. Some directly break down the problems with ABA as being more about compliance and conformity than helping a person live a full life. Ally Grace, blogging at Suburban Autistics, in particular pinpoints for me all that’s wrong with the “science-based” accumulation of data that many people have thrown at me when I say we don’t want to do ABA:
. . .these peer reviewed articles – written and accumulated and reviewed in the basis of the pathology paradigm, in ableism, in purely behavioural markers without consideration of reasons for behaviours, in clinical observation settings with autistic people being looked upon like flies behind glass, and in the assumption that being autistic is something wrong that needs to be rectified as early as possible
I don’t think ABA is essentially evil, or has to be ableist and objectifying. We certainly were not able to find our way through our current insurance bureaucracy to anything truly helpful and worthwhile. I think good therapists are out there. But when I read what people with autism have to say for themselves, I can see how unschooling can really help my daughter not feel like the world is constantly correcting and rejecting her. How when we take it easy and make time to understand the sources of anxiety, rather than correcting the behavior, we can make going out in the world more and more positive. I know that when she’s really comfortable, she can do amazing things that she’s not supposed to be able to do with the “current ability +1” framework of behaviorism. Like all of a sudden have a back-and-forth, truly compromise-based pretend play session with her best friend for 45 minutes! When she’s not comfortable, she can’t even speak or move. The difference is not in correcting her social “skills.”
This pattern of analysis, treatment, cure, correction, and compliance is also not necessarily about ABA. As I said, people I love and deeply trust also respond with suggestions for intervention. It’s something about American parenting culture to do more constantly, to intervene and optimize, to worry and feel guilty about not doing enough. But as these two beautiful posts from Heather Kirn Lanier express, as does this blog about high-needs babies generally, I want this child just the way she is. I don’t want her to suffer or be afraid, I wish I could make the world less scary, but I want all of her, and I want anyone who is going to be her teacher or helper to be amazed by her too.