Does Neurodiversity Whitewash Autism?
Neurodiversity is news now, and some say it glosses over disability. I say no.
Posted September 29, 2015
Does neurodiversity whitewash autism? Several articles have suggested that in the wake of Steve Silberman's Neurotribes book, which appeared with a great bang and flash last month.
As a neurodivergent person, I’d like to offer this thought on a phrase I see often online, and in particular as expressed by one of his critics: "I love my son but I hate his autism."
You know what? There are days I hate my autism too. And there are days I wish I was dead. I am forever saying and doing the wrong thing. Sure, I’m better at social navigation now that I am older. It remains stressful. And when things go wrong, it’s really stressful. I hate that.
And then I can’t let go of it, because of my autistic perseveration. And I hate being autistic then for sure. Yet I can see how autism is for me a double-edged sword. The same perseveration has kept me focused on important jobs and that’s made me a success, commercially. My social isolation has had the same effect – freeing me to befriend technology just as it left me lonely and lost.
I recently wrote an essay about the need for us autistics to build a community, and with it, a collective self-image. That would have gone a long way toward helping me as a kid. It helps me now, as a grownup.
Phrases like “I love my son but I hate his autism” don’t help any autistic person. They may help angry or frustrated parents blow off steam, but parents interests are not ours in that example. What may make them feel good for a moment makes us feel bad for a lifetime. When families go through divorce many courts mandate counseling. In that counseling, parents are told not to criticize the ex-spouse in front of the kids, because those kids are half him (or her.) The same is true for autism. It’s part of us. Telling us you hate it is just as corrosive as saying you hate our other parent.
So it’s one of those things like the N-word. Black people can say it. White people can’t. I can say I hate being autistic, some of the time, because I am. If you’re not autistic, it’s not yours to hate or say.
Parents may also ask, "What about people who have no double-edged sword? They have no gifts, only disabilities."
Let’s look at facts here. Autism is at its heart an imbalance of intelligence. I – for example – am socially dumb but technically smart. Other autistics have similar imbalances – many of us are low on the social side, and our “smart side” can take many forms. The thing is, we all have that variation.
Unfortunately the gift side often does not show up till the teen years, and sometimes not till adulthood. That’s how it was for me and many other autistics I know. So parents who say their little kids “have no gifts” are in my opinion making a rather premature and dangerous judgment.
What about the adults who grow up to be totally disabled? In some cases, the problem is communication. For me, I have been blessed with a good ability to speak, and it’s just my choice of words and misunderstanding of social cues that caused me trouble. Other autistics can’t speak effectively, and until recently that meant total disability in modern American society. Today some of those people are emerging from disability thanks to technology. They speak through ipads and other devices. For those people, the process of finding their gifts may be just beginning as communication ability develops, and again judgment today is premature.
For many of the rest, the problem is not autism so much as intellectual disability. People whose abilities are in the bottom percentile are going to be profoundly impaired no matter what label you attach to them, and those people are always going to represent close to 1% of the population. To blame that on autism is wrong. Theirs is an issue of applied reasoning power. And we don’t know how to fix that.
That said, we should not and do not dismiss those people and their challenges in any autism committee of which I am a part. One major problem for people with intellectual disability is that the people tend to be invisible as it's the nature of their condition. We should always keep that in mind and speak out for them when needed
That brings me to the last claim I hear bandied about: More than half of people with autism are intellectually disabled.
That claim – if it was ever true – is wrong and its persistence surprises me.
In my capacity as a member of IACC (our government’s top-level autism committee) I have the privilege of access to a great deal of autism research. One of the things I’ve learned in the past two years is that our newest studies are showing autistic people in all segments of the IQ range, in numbers that are not too different from those of the general population.
In fact, one of the challenges policy makers currently face is accommodating the increasing number of diagnosed autistics who are headed for college and asking for autism accommodations in light of their diagnoses. While intellectually disabled autistics exist, they are the minority, not the majority.
At the same time, many of us have specific intellectual disabilities, but we are not intellectually disabled in a diagnostic sense. For a person to have a medical diagnosis of ID they must have significant limitations in most every aspect of cognitive function. While I have profound limitations in social intelligence – and that is a real disability – my overall cognitive function is good.
Most autistic people are like that. The idea that we are mostly ID is simply wrong and the idea lingers from a time when the breadth of the autism spectrum was not generally recognized.
Reasoning problems are different from talking problems are different from sensory problems. While a single person may have just one or all those challenges ID stands out as a unique and substantial disability, and it magnifies the challenges of all other aspects of autism, just as it can and does stand apart from autism in many people.
That does not mean we should ignore cognitively disabled autistics. But we should recognize that autism and intellectual disability present different challenges with only limited overlap. That is one more reason why the range of therapies and services we autistics need is so broad.
“OK, but autism still isn’t sweetness and light. My son attacks us, and he smashes his head through walls.”
It may surprise you - looking at me today - that I did those very same things. And I’ve written about the anger and frustration that drove me to that in my books and in many articles and interviews.
Some of that frustration came from within – I got mad because I could not do what I wanted as I saw others do things easily. Other frustrations and anger came from the way others mistreated and abused me.
And sometimes it just felt good to bang my head, or savor the feel of little balls of poo. That's another way of saying I had some significant sensory differences. And if they led to unhealthy behavior - find a substitute. I know that's possible one day, even if we can't always know and do today. Research can help.
Take away the triggers and you end the violence. I’m not telling parents that is simple, but I am saying self destructive behavior has a cause, and it’s not autism. It’s frustration and abuse and sensory issues. Societal change for the first two, science for the second.
Add cognitive ability, and add communication ability and you increase our ability to regulate as you lower our blood pressure. Technology is beginning to address this and it’s a great thing to look forward to.
Don't mix up the idea of a private bitch session about how tough parenting is (that's real and every parent is entitled to it) with public discussion of autism and autistic people. I cringe at the things some parents post about children online and how those kids will feel if they read that junk a decade hence. But that's a parenting observation too - it has nothing to do with autism.
Note that none of these things are "neurodiversity issues." Neurological diversity is just the recognition that human neurodiversity is real. Some people may act autistic as a result of abuse or injury, but true autism is something we're born with. Some of us are the result of spontanous genetic changes (for reasons both suspected and unknown,) and others of us seem to pass on a stable form of autism from one generation to another (like in my family) That being the case, autism and us here to stay and the main thing we ask is that we be both accepted and helped. Our disabilities are real, and so are our lives.
What's the whitewash in that?
John Elder Robison
All words and images (c) 2015 John Elder Robison
John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the neurodiversity scholar in residence at The College of William & Mary, and author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He's served on the Interagency Autism Coordinating Committee of the U.S. Dept. of Health and Human Services and many other autism-related boards. He's a cofounder of the TCS Auto Program (a school for teens with developmental challenges) in Springfield, MA.
The opinions expressed here are his own.There is no warranty expressed or implied in these words. While reading this essay may give you food for thought, actually printing and eating it will probably make you sick.