Speaking for Myself
The following post is by CC, a regular reader and commenter who also has Asperger’s syndrome.
Imagine, if you will, that there’s a group called, say, Fatties Speak. On the surface, they seem to support Health at Every Size (HAES), and the idea that fat people aren’t freaks of nature, but rather people born into a different phenotype. Imagine, though, that its actual aim was not to reach out to fat people, but to their family members, to say that they understood their “grief” and that they knew what was best for these poor, sad fat people. Imagine that members of this group’s leadership gave TV and radio interviews, produced web videos, and, as a result, raised millions of dollars (in corporate sponsorships alone, including $12 million in donations through Toys R Us) to speak out against the epidemic of fatness and how it needs to be completely eradicated (not really a huge stretch).
That is exactly what Autism Speaks does to us. And by us, I mean the living, breathing human beings who happen to have some variety of autism spectrum disorder (ASD).
If you visit Autism Speaks’ website (autismspeaks dot org — I’m not giving them free trackbacks), you see some fairly innocuous stuff at the top, such as links or pictures of recent events. But in the sidebar you’ll see the following:
According to the most recent figures available, the 1 in 88 number is true. In fact, diagnosis rates have jumped 23% in two years. But, as the NPR health blog rightly states, much of the increase is due to the fact that people are getting better at diagnosing ASDs. The diagnosis may be new, but behaviors are the same as always.
Thanks to the significant increase in diagnoses for autism and disorders under that umbrella (i.e., Asperger’s syndrome (AS), pervasive developmental disorder not otherwise specified (PDDNOS)), Autism Speaks has triggered a lucrative panic:
The rapid rise prompted calls to declare the developmental disorder an epidemic. “This is a national emergency in need of a national plan,” Mark Roithmayr, president of the advocacy group Autism Speaks, said at a CDC media briefing Thursday.
It’s become a buzzword designed specifically to sow fear.
But at the same press conference, the Centers for Disease Control and Prevention explained the increase as a result of “better recognition of the disorder by parents, doctors and teachers.”
For better or worse, ASDs are now in the public eye more than ever, and it’s helping laymen learn to see the signs. But, of course, the more people know, the less they need professionals, in theory, which doesn’t sit very well with organizations like Autism Speaks, which depend on donations for most of their budget.
I was diagnosed with AS comparatively late in life (not until I was about 27, when most ASDs are diagnosed during childhood). AS didn’t appear in the DSM-IV as a separate diagnosis until 1994, when I was 12, so nobody thought I might have AS until I met very good and smart psychiatrist a few years ago. I was verbal and had no language delays, so I couldn’t possibly have “classic” autism — the nonverbal, locked-in-one’s-own-world kind — and since AS wasn’t around when I saw my first shrink, I was diagnosed depressive instead.
AS was a phantom, a sort of bizarre anomaly found rarely in nature, a diagnosis of something just for weird kids. I could speak and sort of manage to do normal things, so I couldn’t be autistic, and for a long time that was that. Even now, doctors and family members tend to doubt me because there are a lot of things I can do.
It certainly won’t help matters, either, that the American Psychiatric Association, which publishes the DSM, has proposed folding AS back into “autism” and eliminating the AS diagnosis altogether. In other words, the DSM-V (the next installment of the reference book used by most psychiatrists and psychologists in this country) would not have a separate entry for AS. People being evaluated would either be “autistic” and therefore eligible for special services and assistance, or they would be “normal” and get nothing. I look and act normal enough where you would think that wouldn’t be a big deal for me, but it’s a very big deal. I can hold a job, I can hold a conversation and I can live on my own, so for many people, I’m “normal.”
I assure you, I am not.
And the reason I bring this up is because organizations like Autism Speaks are molding the narrative of what autism is. It’s like Jenny Craig telling us what a healthy weight is. Think about it: when most of you hear “autism,” you don’t think of people like me, do you? People who can hold a coherent conversation and a job; who are very bright if socially awkward?
No, most people imagine children, or at the very least damaged adults, locked in their own world, rocking back and forth, flapping their hands, maybe throwing poop around or banging their heads on something. You, or someone you know, probably hold a finite view of autistic people.
Some of you have met an Aspie or otherwise autistic person; some of you are Aspies or otherwise autistic; and some of you are Aspies or autistic, but don’t know it yet. And yet, I’d be willing to bet that most people, if they know anything about autism, know that it affects children. Autistic children become autistic adults, and that inconvenient fact isn’t mentioned very often. I know that in trying to find a psychiatrist who specializes in adult autism, I’ve come across a grand total of three in the Houston area. I see one of them on a regular basis, and the other two weren’t accepting new patients. I’ve been lucky.
Go back to the Autism Speaks website, if you would. Do you notice anything? Or, rather, the lack of something?
I notice two things. Firstly, a much larger proportion of the site’s photos are of families and autistic children. Seriously, comb the site. There are some photographs of adults by themselves, but compare that number to the number of pictures of winsome, tragic-looking children. It’s about three to one.
Secondly, there is absolutely nothing which details any kind of help for autistic adults or even very much discussion of autistic adults. It’s all about children and parents. There is a section on self-advocacy under the What is Autism page, but it is 1. short and 2. demeaning. John Elder Robison, the single autistic member of Autism Speaks’ board of directors, is labelled as a “self-described Aspergian.” Aspergian is another label, similar to Aspie, that is preferred by some people in the autistic community. If any of you can come up with a more dismissive way to describe a prolific author and intelligent scholar, let me know, ‘cause I can’t think of one. This wording sure seems to say that “oh, he describes himself this way, but we don’t! Isn’t it cute and quaint?”
It also describes the autistic community as fragmented and disjointed. Let me ask you this: if you’re fat, deathfatz, in-betweenie, or any other label we throw around, would you want a skinny person to tell you how to conduct yourself, or would you prefer to determine your own path, with your own voice?
This holds true for most adults, but not necessarily for kids. Children aren’t usually old enough or interested enough to read about their diagnosis and, as such, it’s left to the parent to read up and make decisions for their child.
And, oh, what decisions they’re faced with.
I’ll link to their site just once, for the sake of convenience. Right off, there’s a section called “Autism and Your Family.” Okay. Might be helpful; it’s obviously going to be a bit more difficult to deal with an autistic child. When you click on it, a big, ugly word is right there, front and center: grieving. When there’s a section called “Stages Associated With Grieving,” you have a pretty good idea what tack the page is going to take (Hint: An amazingly offensive one.)
“How will I deal with this diagnosis?” it asks, following by the stages of grieving. It talks about the diagnosis as a “shock.” It speaks directly to parents, who are surprised and scared about the future. Right away, Autism Speaks hits parents where it hurts — right in the victim mentality. It becomes about them. It becomes about their struggle. It becomes about their patience and saintliness, about their magnificently sacrificial nature, to devote their life to caring for such a difficult being.
As someone with Asperger’s, I can’t articulate just how offensive this is. Having an autistic child is not easy, and I won’t pretend it is, but for every set of good, kind, patient parents who see their child as a blessing regardless of their neurology, you get the parents who spend a lifetime mourning the Normal Child they never had.
Trust me: we feel it.
I didn’t want to mangle Shakespeare, but I will: if you prick us, we bleed. If you poison us, we die.
But yes, right. Parental sacrifice. The good ones make the sacrifice and have good and bad days. The bad ones dwell indefinitely on how they’ve sacrificed so much to take care of us.
Apparently, parental sacrifice is so central to having an autistic child that it’s okay to talk about driving your autistic daughter off a bridge because you can’t handle the strain.
Apparently it’s okay for Autism Speaks to present autistic people as kidnap victims and suggest they are the cause of everything bad in their parents’ lives.
Not every autistic person is able to speak in recognizable language, but they can still communicate. None of us needs Autism Speaks to tell the world what we are or how they should treat us. None of us needs Autism Speaks to treat us like we are burdens, freaks, or causes for momentous grief.
Autism Network International puts out a newsletter which has some of the most insightful writing I’ve ever seen on this issue. Jim Sinclair wrote a piece I always loved, called “Don’t Mourn For Us,” and I’ll let him have the penultimate word:
This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it — and then do something about it. The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?
But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.