The Fundamental Disconnect
Last week, on one of my autism mailing lists, someone posted a link to this article written by a mother of three small children with autism.
(Warning, the toilet practices of two autistic children are described in lovingly graphic detail in this post, so if you're eating you might want to stop.) The author of the article slams the neurodiversity community several times, complaining that we (adult autistics) want to keep her from assistance that will help her daughters learn to stop playing in the toilet and how to flush.
I have run across sarcastic posts about the neurodiversity movement like this from time to time, and it always bothered me, but I could never put my finger on why until I read this overtly bitter article. And then it dawned on me: These parents apparently think we want their kids to have NO assistance at all. That we want their six-year-olds to continue playing in a used-but-not-flushed toilet, that we want their ten-year-olds to not learn to flush when they use the toilet, that we want their three-year-olds to live only on Cheerios and cheese. That our objections to the available "treatments" for autism are absolute. That we don't want their kids to learn basic life skills like flushing the toilet and washing their hands and eating a balanced diet.
That could not be further from the truth!
I can sympathize with Ms. Stagliano's problem. It's no fun to clean up the messes that your children make - especially when they involve bodily wastes. As a parent who has had to do that more often than he cares to remember, I know how frustrating and annoying and exhausting that is. And as an adult autistic, I do not want to see young autistics doing things that are dangerous or unhygenic or unhealthy any more than their parents do. I recognize that what Ms. Stagliano is describing is unacceptable behavior for a number of reasons, including sanitation, health, and safety. And while I can see that the neurodiversity community's resistance to the solutions touted by the medical community today may look to Ms. Stagliano and other members of the cure-autism community like a resistance to any services for autistic children at all, I know that that is not the case - but in order to explain what that resistance is and where it comes from, I'm going to have to discuss issues that Ms. Stagliano did not touch upon in her article. The root of those issues is called ABA, Applied Behavior Analysis, and it's Skinnerian behaviorism at its most egregious.
I think that the fundamental disconnect between parents of young autistics and the neurodiversity community is about ABA, because really, it's the thing that is most often touted as a "service" for autistics by the medical establishment, and thus, also the most often demanded by parents. There have been court cases where parents have sued health insurance companies for not covering ABA, and neurodiversity advocates have fought against the parents in court, because ABA has been shown repeatedly to damage autistics psychologically. But the parents don't hear "We are against ABA," because they've been told that ABA is the only
solution for them. They hear "We are against your children learning how to cope with the world." And that is not the case. What we are against is the method
that is being put forth as "the only solution."
My objection to ABA and other such behaviorally-based practices is threefold. First, while they're technically based on a good idea, which is that learning to take care of oneself is necessary, they are very often taken too far. I can't tell you the number of times I've heard of autistic kids being shocked with electrodes, denied food, beaten, or locked in rooms in institutions and in homes in the name of "therapy." It happens. It's real. And it's scary as hell. It's abusive. Is all ABA abusive? No. But the potential
for abuse is certainly there, and becomes a reality far more often than it should, which is never. (On a related note, standard ABA is supposed to be forty hours of work per week with the child. Does anyone really believe that that's either fair or realistic when you're talking about a three-year-old? Or, for that matter, a ten-year-old?)
Second, ABA and other behavioralist setups assume that the child being trained is already able
to sense things like when he needs to use the toilet, when he's hungry, when he's thirsty, and that it's willfulness on the child's part that is preventing success. I know from personal experience that a lot of that is information I do not have good or reliable access to, and I'm 35 years old! Expecting a three-year-old autistic to be potty trained is unrealistic and cruel. Expecting a six-year-old autistic, who may not be able to tell that it's potty time, to be potty trained is just as cruel. We have all these stupid schedules for when you're supposed to learn life skills - when did that happen? So what if he's still in diapers at six? It is probably not his choice to be that unaware of what his body needs. Some of the adult autistics that Ms. Stagliano complains about, the ones who are able to "speak eloquently, write blogs, move out on their own, marry, have children and manage their autistic traits" still can't control their bowels, even as adults. I know of three just in my immediate acquaintance. One of them wears a colostomy bag. Punishing an autistic child for not being able to figure out when he needs to go to the bathroom may very well be like punishing a blind kid for not looking at things hard enough.
Third - and this is a biggie, they all are, but this is where I really get my dander up over ABA - if you want to use behaviorist methods to teach a child what are called "life skills," that's great. That's necessary. We do that with neurotypical children too. Yes, teach him how to flush the toilet after he uses it. Teach her not to play in the toilet at all. These are necessary things to know and remember. But using any behaviorist approach to try to teach social
skills - um, no. Not okay. More to the point, not realistic. Social skills require cognition, not a rote response or habit, nine times out of ten. In order to teach a child social skills, you have to step away from the behaviorist setup, which says that the mind doesn't matter. If you want appropriate social responses from an autistic child, you first have to find a way to communicate with him, so that he can understand why he has to look people in the eye, take turns, and so forth. Simply training him to mimic
social skills doesn't do a damn thing, and can often make things worse.
Now, I did not personally get ABA treatment as a child. It didn't exist in the 1970s for people who were on the lighter side of the autism spectrum, like me. I'm not Rain Man, so I wasn't "obvious" to the doctors. The proper diagnosis for my type of autism didn't come into being until sometime in the 1980s. That did not change the fact that I was pressured and forced into eliminating my "weird" behaviors in much the same way as autistic children are pressured through ABA treatment today, however. And as someone who was coerced into mimicking social responses, I have to tell you that it didn't do a damn thing for me and made my life a living hell in a lot of ways. Behaviorist approaches don't appear to differentiate between "what is necessary for the child's physical well-being" and "what the parents want so that their kid doesn't act strangely in public." If you want your child to successfully develop social skills, he will have to do it the same way any kid does - by trial and error and thoughtful application of reasoning skills - and because he or she is autistic, it will take longer, because she or he doesn't have access to all the nonverbal signals that neurotypicals use to adroitly manuver through social situations. Trying to get her to mimic normality is only going to set her further back, because neurotypicals are not stupid, and they can almost always tell that there's something off about the presentation.
I will admit that Ms. Stagliano may not be thinking of ABA when she says she wants services for her children. But there are certain phrases in what she wrote which at least imply a desire for some extreme treatment to eradicate her children's autism. Phrases like "recover from their autism" and "don't tell me to give up on my girls" indicate that she sees autism as a fixable condition rather than a state of being, and that allowing them to be anything other than completely stereotypical neurotypicals is "giving up." That's the crux of the problem. ABA is touted as a "cure" by the more extreme pseudo-physicians who play on parents' hopes, dreams, and fears, and that's not okay either - and if they're desperate enough and refusing to see autism as part of their child rather than a disease, parents are more likely to accept this extreme and damaging "treatment." That's my worry, and the worry of most of the members of the neurodiversity community - that when Ms. Stagliano and other parents of autistic children say these things, what they want is ABA to magically make their autistic children into neurotypicals - in other words, they see it as a cure, which also implies that they do not see autism as a part of their child but as something separate, outside, and malignant.
Ms. Stagliano, if you want ABA so that your child knows how to flush the toilet, brush her teeth, dress and feed herself, that's great. I have no problem with that. If you want ABA so that your child stops acting weird in public, that's not great, and I have a big problem with it - and in my experience, that's where most adult autistics also have a problem with it. Is it worth it to make your child "normal" if you take away all the things that make her a unique person? So what if she spins? So what if she rocks? So what if she loves to talk about elephants, nutcrackers, or the imports and exports of Peru? Are those things really that bad? Get some perspective, please. Training your child to stop running out into the street is good. Training your child to stop rocking, flapping, or spinning is bad - and too often, that's what ABA focuses on most, instead of the important things like life skills and safety.
I guess my plea to Ms. Stagliano, and the rest of the "cure autism" community, is really this: take a hard look at your priorities, because being weird or different is not a crime. All we're asking is that you stop treating non-dangerous differences as if they are dangerous - to stop blowing your child's differences out of proportion. Do that, and I think you'll find support from the neurodiveristy community on the truly important things: health and safety.
Let's face it: we all want autistic children to be safe and happy - both those of us who are their parents, and those of us who used to be autistic children ourselves. Let's get together on what those words mean, and find realistic and non-damaging ways to achieve them.
Although I would like to spend some time addressing how ABA is ineffective in the "teaching social skills" department and damaging in other ways, I do not have the energy or time to assemble a list of references and write a more in-depth critique and explanation at this time. I may do that in a forthcoming post, but no promises as to when - it's been a long school year and I'm not done yet. I just really needed to address this while it was fresh in my mind.