In response to “Seeing the Spectrum”

[CN: Functioning labels, martyr parents]

My offline life is really full at the moment. I’m juggling a lot of things while trying to manage a complete lack of spoons. I’m still sliding down to burn out, and I’m accepting the real possibility that I might not be able to stop that slide.

But today, I’m going to use some of my incredibly depleted spoons to respond to a horrid thing that was published in The New Yorker [TW: Curebie nonsense].

A book has been released. A book written by two non-autistic adults who have autistic relatives. My heart breaks for their relatives because, judging by what this article says is written in the book, the authors do not accept their relatives for who they are. I hope that one day their relatives can find the vibrant autistic communities and feel what acceptance feels like.

Firstly, please go read this post from Nick Walker to find out what we think autism is – learn from autistic people who experience autism from the inside, rather than non-autistic people who only see it externally.

I’m not going to address the entire article because it’s incredibly long, and it’s incredibly yuck, but I do want to address this part:

“The most forceful dissent comes from many of those who have themselves received an A.S.D. diagnosis and who have become eligible for the recognition and the support that flow from being on the spectrum. Some activist groups reject the very idea of therapeutic treatment, claiming that there is nothing pathological to be treated. They say that, in the same way that we’ve learned to celebrate racial, ethnic, and sexual diversity, we should be celebrating “neurodiversity.” The journalist Harvey Blume, writing in The Atlantic, has even claimed, “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.” Donvan and Zucker take a generally disengaged position on this matter, blandly approving the acknowledgment of “the dignity of individuals who are different by virtue of fitting the label in some way.

The neurodiversity activists have learned a trick or two from history, even if they’d like to see much of it undone or rebranded as a history of medical hubris. One is to attach spectrum tendencies to increasingly valued “normal” social roles, and they’ve seen the utility, as well as the fun, of contesting ownership of the word “normal” and coming up with a sharply sardonic account of the disease symptoms of “neurotypicals” (NTs)—“preoccupation with social concerns, delusions of superiority, and obsession with conformity.” Neurodiversity activists confront parents of severely autistic children in exchanges that are as full of pain as they are rich in irony. Activists insist that there should be no more talk of pathology and no more programs for treatment and cure; the parents are outraged that activists who place themselves on the high-functioning end of the spectrum have no real understanding of the serious disabilities afflicting children at the other end, and are undermining the gains in treatment and recognition achieved over so many years.”

“Some activist groups reject the very idea of therapeutic treatment, claiming that there is nothing pathological to be treated.”

I do not know a single neurodiversity activist who rejects therapeutic treatment. We agree that therapies can be helpful, but we reject the notion that therapies should be aimed at normalising us. This means that we carefully choose therapies to ensure that they remain respectful of autistic people’s rights to autonomy and self-determination.

“Neurodiversity activists confront parents of severely autistic children in exchanges that are as full of pain as they are rich in irony. Activists insist that there should be no more talk of pathology and no more programs for treatment and cure;”

Yes, we are against curing autism. We know that current evidence suggests a genetic basis to autism. We know that for other conditions with a genetic basis, the “cure” is prenatal testing and termination of pregnancy. We quite like our lives so you can well imagine why we wouldn’t like a cure that looks like that. That said, we are not against treating co-occurring conditions. We acknowledge that many autistic people have co-occurring conditions, and that quality of life can be enhanced by addressing those conditions. But when you focus on preventing or curing autism, you forget to focus on the co-occurring conditions.

“the parents are outraged that activists who place themselves on the high-functioning end of the spectrum have no real understanding of the serious disabilities afflicting children at the other end, and are undermining the gains in treatment and recognition achieved over so many years.”

If the “journalist” responsible for this article had even bothered to google, he would have discovered that we are very much against functioning labels in general. We do not place ourselves on the high-functioning end, because we don’t subscribe to the notion that there are “ends.” Many parents decide that we are “high-functioning” forgetting that comparing us, as adults, to their children is fallacious because obviously we would have more developed skills. They do that to dismiss us.

So basically we have a “journalist” who did a book review without doing his due diligence and fact checking the information in the book. Yes, there is a divide. No, there will never be unity when one side seeks to eliminate the other.

Now, here’s an exercise for anyone who reads that article in order to understand why we’re horrified that, once again, a journalist has decided to take the most common approach to writing about autistic people: Replace autistic people (or people with autism since person first language again dominates) with another group of people – women, people of colour, a religious group.

Would it be ok if it was about any other group of people? If you think it would be, then you are a bigot. And, if you think that it is ok to write about autistic people like that, you are also a bigot.