From the newsletter…
Compared to other disabilities, autism is a newborn baby. Leo Kanner, a Baltimore-based child psychiatrist first studied the condition in the 1940s, but it was only in the 1980s that the scientistic community really began recognizing the scope and the range of this condition. (For more autism history, check out Steve Silberman’s book, “NeuroTribes.”)
Although we are only just beginning to understand autism, the condition itself has probably be around forever. Some speculate that the autistic traits of early humans led them to the develop tools and draw cave pictures. Temple Grandin once speculated, “What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”
The past forty years has seen a huge growth in our understanding of autism. Yet, the autism community, which includes people with autism, caretakers, scientists, therapists, activists, and teachers, is extremely divided. While a certain amount of debate and disagreement is healthy and productive in politics and science, an extreme faction in this group has arisen that poses a significant danger to the larger community.
My first sentence in this newsletter identifies autism as a disability. That is actually a controversial statement today. Some would say that autism is not a disability, but simply a neurological difference. Others would even say that it’s a super-ability.
It’s extremely difficult to advocate for autistic people, if we can’t even decide if it’s a disability. A disability is a condition that makes it difficult for one to function in the wider world. If you can’t drive a car, walk without assistance, hold a job, or understand currency, then you are disabled. If one has a disability, then one can get support from government. Government and schools don’t typically give extra help to people who say that they have a superior form of cognition.
In truth, autistic people are really different from each other. It’s safe to say that most people with autism have issues — sensory, behavioral, social, and/or cognitive — that prevent them from blending into the mainstream world effortlessly. While some autistic folks have slight problems and great gifts and, thus, dominate the physics and engineering departments of the world’s finest universities, others require 24/7 professional care.
It’s tricky to decide which group should be the face of autism — the physics professor, the gamer geek who can’t leave the house, or the nonverbal kid who self harms and never sleeps. Each group has its own interests and needs. But by focusing on the commonalities of the disabilities, then more people can get the help they need, whether it’s at a university, a multi-national computer company, or a group home.
On the extreme end of this debate, some advocates oppose any form of autistic therapy, comparing autism therapy to gay conversion therapy — an act of violence to the autistic identity and rights. If autistic people wants to “stim” – flap their hands or make unusual utterances, for example — they should. We shouldn’t train them out of behaviors that make them happy or control anxiety.
The most common form of therapy for autism is Applied Behavior Analysis (ABA). In an nutshell, ABA uses sticks and carrots to redirect kids with autism. It’s the old “star on the chart” method that parents use to train their toddlers, just amped up to 11. The behaviorist targets an autistic behavior, like hand flapping, nose picking, or verbal tic, by monitoring how many times those actions happen, figuring out the triggers, and offering inducements or punishments to stop those behaviors. Everything is calculated and graphed.
Studies show that intensive ABA (25-40 hours per week) at a young age improves outcomes for some people with autism. However, some think that ABA doesn’t work and damages kids. Imagine having an adult in your face for forty hours a week making you do stuff that you really don’t want to do. It would suck, right?
My kid never had ABA as a toddler, because he didn’t get a diagnosis until he was five and never “stimmed.” In elementary school, he only had a light version of ABA, so I don’t have strong opinions on this particular form of therapy. I believe that ABA is successful because of its time intensive; I’m sure that other therapies that involve lengthy adult interactions are equally effective. Therapists tell me that ABA makes the kids a little robotic and takes away their agency, but that this method can be easily taught to an army of special education teachers, so it’s very practical.
While I’m not an ABA advocate, I am a therapy advocate. I strongly believe that brains improve with the right exercise. I strongly believe that autistic kids should receive intensive help at an early age, and that all efforts should be made to improve their quality of life in the world as it exists today and not in some mythical world.
While it would be really nice if autistic people could do whatever they wanted, schools cannot allow students to run up and down the hallway. They cannot allow a student, who is frustrated by his lack of comprehension of biology lesson, to punch a teacher in the stomach. No supermarket will employ a worker who paces back and forth in the meat section scripting scenes from “The Lion King.” We can’t ignore the fact that people with autism have some rough edges and do not blend well into the mainstream world. While we can teach the mainstream world about autistic behaviors and to tolerate those behaviors in certain settings, it is simply a fantasy to believe that the world will become an autistic free-for-all. Nobody can do whatever they like, not even autistic people.
Back in the late 1990s, Andrew Wakefield, a British physician wrote an article making a link between the MMR vaccine and autism. It took years to undo the damage behind that much discredited article. He took a group of grief-stricken parents and turned them into an army of anti-vaxxers. Today’s Wakefield equivalent is the woke autistic movement that does not acknowledge the limitations of autism, tries to undermine the existing systems for helping children with autism, and has unrealistic expectations for inclusion and acceptance of autistic behaviors.
Picture: Ian in his third grade chorus show. While he’ll always be a bit different from other kids (looking in a different direction in the first picture), he can also blend in when necessary (second picture). I think that’s the autism sweet spot.
Apt. 11d 
A bit of a tangent, but you may enjoy Helen Hoang’s trilogy that starts with The Kiss Quotient. The first two books of the series have an autistic female and male protagonist respectively. Really well written, fun, and I thought they both dealt with some of the highs and lows of autism well.
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Thank you for writing this. While I love the idea that typically-developing people with sensory and social issues can get an explanation and a break, my heart just sinks when I see the expansion of criteria such that most of us now could qualify for a diagnosis and again when still another fully-functioning adult claims the label. I’m sure they don’t think they are making life harder for a non-verbal school-aged child to get services, but I worry that they are.
We did full metal ABA, with good results – my son is now fully independent (if not living up to his intellectual potential at work). In retrospect, our timing was fortunate – he was diagnosed when clinicians were aware, ABA was available if you had the funds and the lawyers, but schools hadn’t set up less effective programs they could claim as reasonable alternatives, they hadn’t trained teachers in watered-down versions of ABA. Still – it was very hard to get and maintain good services. And without them, I do not think he’d be living and working independently.
Also….from a reluctant ABA expert, good ABA isn’t carrots and sticks, it’s analyzing a child’s behavior to determine what they are able to do and teaching them increasingly more complex and functional behaviors incrementally, using anything that reinforces them. But I realize most of what people see is the crude facsimile. The backlash against that, against having “someone in your face all day”, is legitimate and I also worry that good effective ABA – which should be careful and respectful and not in anyone’s face – get tarred with the same brush.
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In today’s world, many hold to the idea that a marginalized person’s view of her/himself and the world must be accepted and affirmed. This is a mistaken attempt to respect the person (and all people do deserve a respectful hearing, just not automatic agreement). It’s understandable that woke autistics would want to take advantage of this dynamic, so it requires those whose views differ to tolerate being attacked as bigoted or ablist and to continue to point out the very real calamities that can occur when people with autism are left to their own devices without the support they in fact need.
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I’ve been thinking about this idea a lot. I don’t really know what “woke” means in this context (is it EB’s “a marginalized person’s view of her/himself and the world must be accepted and affirmed”) or is it that there are a group of people who strongly disagree with the position you are expressing here (even something that seems to most as uncontroversial as disability itself) and are very vocal about it? If the second, I am aware of those people and the distress they cause to people who disagree with them (who I may think are right or wrong or somewhere in between depending on the the individual issue).
What I take from the listening to them (even when I don’t agree) is that it is important to respect the disabled individual, to question oneself about why we are using the treatment or intervention. Are we using ABA because we want the child to attain an independent life (minimum requirement, not punching people in the face)? or because we want them to not annoy us (flapping)? Mind you, I think the same is true for every person you might be charged with making decisions for, including 17 year old typical children — the difference is that in some cases it is easier to ask.
Children will grow up to live in a world where everyone doesn’t love them. There will be limits to what the world will offer in support. Thus, if “independence” is possible it is, in my mind, a goal worth striving towards. I’ve thought recently that some of the collaboration of ideas between the adult, verbal, Autistic and individual parents (Thinking Person’s Guide to Autism, for example) might come from parents who are raising children who do not have independence as a goal and for whom “asking” the child is difficult. So they are listening in the hope that verbal individuals will give them answers. Misguided? Maybe, but I think not knowing what your child wants is one of the biggest struggles of parenting and even more of a struggle when they are no longer a child.
Many of us can step back at the point where our child is an adult, let them make their own decisions and suppress our desire to help them being their better self and get what we think they want. It’s a challenge to navigate when you can’t step back.
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bj said, “Autistic and individual parents (Thinking Person’s Guide to Autism, for example) might come from parents who are raising children who do not have independence as a goal and for whom “asking” the child is difficult. So they are listening in the hope that verbal individuals will give them answers.”
There’s a saying (I forget from where) about how all behavior is communication. So, yes, it might be possible to get clues from high functioning autistic people about what is bugging a non or less verbal autistic person.
“All behavior is communication” also suggests that it’s a really bad idea to just shut down all behaviors that are distressing to the parent, as shutting down the behavior is silencing the child and cutting off an avenue for communication. But if you could substitute a different, less disruptive form of communication, that could be very helpful.
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