#IDeclare that I don't have to beat autism to succeed.
It's wonderful that Joel Osteen Ministries included autism in the YouTube video they made to promote their #IDeclare social media campaign.
It's actually pretty cool: people make positive statements about how God empowers them to take control of their lives, and then Tweet them, or post them to Facebook, or take pictures of themselves with signs and post them to Instagram or send them to a website.
So what's wrong with including "I will beat autism" among the other signs in the video, like "I will choose faith over fear"?
My friend Paula Palmer sent this to me, and I'd like to let her explain why it bothered her:
When I first saw this video it was on a FB page dedicated to a dog named Buck who was found horribly maimed by buckshot wounds all over his body. Whoever did this to him still hasn't been identified but he is recovering with the help of his wonderful rescuer, his doctors, and all the people who have donated to his cause to help pay for his medical expenses and care. I know the video was posted to inspire people to do their best and be brave like Buck has been - he had surgery this week to repair his eyes and is still in excruciating pain - but when I saw the boy holding a sign that said, "I will beat Autism" I couldn't help but think that no one expects Buck to be anything but the best dog he can be, whatever his condition, and I couldn't also help but think that this boy deserves as much respect for his autism.
It pains me that anyone would believe they have to overcome the very thing that makes them unique and special in God's and our eyes. I think what would serve viewers even better would be a sign that says God will always work with us right where we are. We all have obstacles to overcome but we can only accomplish our goals by being our authentic selves, the way we were made. Buck is already whole and healed just as he is and I also believe the boy in this video is whole and healed just as he is and I would like to see him have the opportunity to share that kind of happiness with the rest of us.
We all probably want the same things for the kid holding the sign that the person who made it does. We want him to communicate easily with others. We want him to learn and contribute and, eventually, to live independently. We want his life to be free from unnecessary pain.
But I don't see any of those things as beating autism.
Because I also want this kid to accept and love himself exactly as he is. I want him to make the contributions only he can make. I want him to be a first-rate, completely joyful autistic person, not a second-rare imitation of a neurotypical person.
The "I Declare" campaign is about the positive power of language. Its creators also need to recognize that language can carry unintended negative messages.
I want the people participating in this campaign to see us, and to know that many of us see the presence of God and autism simultaneously in our lives.
1. Create your own "I Declare" message about the positive power of autism or autistic people. Drawing inspiration from the YouTube video, here are some examples:
#IDeclare that the greatness God has placed within me is indistinguishable from my autism
#IDeclare that autistic people will choose pride over shame
#IDeclare I will exceed your expectations for someone with autism
#IDeclare that autism is part of my destiny
#IDeclare that I will overcome every challenge and celebrate every gift
#IDeclare our autistic children are blessed
There's been a lot of excitement in the press about a new study that tells us something we already knew: some autistic people stop being noticeably disabled if they got the right education and support.
It’s not a huge surprise that autistic people with average or above-average cognitive abilities might be able to intellectualize social rules and algorithms and put them convincingly into practice. Does that ability mean that they aren’t really autistic? The real crux to answering that is this: Do we view autism only as a clinical diagnosis based solely on behavior and outward function, or do we talk about it as a neurobiological construct and identification, with an understanding of the context of the hidden disability and the hard work that those outward behaviors require?
Many conditions that we measure either directly with lab tests or behaviorally can lie under a mask of apparent normalcy or typicality. A woman with diabetes who maintains her blood sugar at a healthy level through diet and medication still has diabetes. A person with obsessive-compulsive disorder who fights successfully every second of every day against caving to obsession or compulsion still has the disorder. Anyone who has ever put on a public face when all they wanted to do was stay in bed should understand something about doing the internal hard work of compensating for a disability without showing outward manifestations of it.
Psychologists say we learn adaptive strategies, and some of them work very well indeed for those of us with the cognitive resources to make full use of them. I’ve certainly seen how they helped in my own life. I was disabled as a child, but no one would call me disabled today. I’m independent and function, as are many autistic people.
But that’s the thing . . . I’m still autistic.
I hate Slate.
I hate it because of its deliberately contrarian nature-- they appear willing to publish anything that opposes conventional wisdom in a way that can be made into an infuriating enough headline that people will click on it. They are famous for this-- the #slatepitch hashtag that mocks this tendency is still going strong after three years. Emily Bazelon writes about every case of bullying by explaining why the real injustice would be requiring the bully to pay any consequences (most recently it's Lance Armstrong). They publish some good stuff, but mostly it's smart people slumming and trying to be deliberately provocative for money.
This is a typical Slate headline:
Amy S.F. Lutz has an autistic son with limited verbal expression. Her article is about facilitated communication and autistic self-advocates.
It made me sad.
I don't know what to think about facilitated communication, really. I wouldn't recommend it, but I don't dismiss people who use it. I'm agnostic. I've said what I have to say about in my review of the movie Wretches and Jabberers and in this extended piece.
I can imagine how hard it must be for someone like Lutz to see people who look like her son writing books:
Jonah was 4 years old when he started writing in chalk on our driveway without ever having been taught—although his phrases, like “FBI WARNING,” were admittedly less communicative than Carly Fleischmann’s complaint, “HELP TEETH HURT.” Despite that, I really believed, for many years, that Jonah would develop into the next Tito Mukhopadhyay, the Indian boy featured in Iversen’s Strange Son, who published several books of poetry despite autism so severe he was nonverbal; prone to constant, repetitive movements, or “stims”; and, not infrequently, disruptive, noncompliant, and even aggressive with his mother.
Now that Jonah is almost 14, I’ve come to accept that what he writes and says (he learned to speak in a rudimentary fashion when he was 5) pretty accurately reflects what he’s thinking: “No school,” “BIG orange juice,” “Mommy and Daddy leave and Jonah stays at Costco” (so he can ransack the bakery department). Not that we will ever stop pushing him, working to expand his limited communication and social skills, while trying to maintain control over the frequent and unpredictable rages that necessitated a 10-month hospitalization when he was only 9 years old—rages that made him pound his own face bloody before turning his aggression outward in attacks that left us scratched and bruised. But as far as an “intact mind”? If it means a level of articulation and abstract reasoning belied by everything Jonah says and does—well, I no longer pray for my son to be someone he’s not.
This is really complex stuff, and painful, but it's important.
Some autistic people appear to have intellectual challenges, but really they just have a hard time communicating their intelligence to us.
Some autistic people have intellectual challenges that go beyond difficulties with communication.
I don't know how you can possibly tell these people apart from the outside, but both exist, certainly.
But I have a hard time dismissing the minds of people with intellectual challenges. You don't have to be conventionally smart to have good ideas, just like you don't have to be conventionally attractive to be a good spouse.
So much pain, so much anger.
Lutz spreads unsubstantiated gossip about Amanda Baggs:
I exchanged emails with one of her old acquaintances. Although he confirmed that the statements he wrote online were accurate, he couldn’t say anything else: Baggs’ lawyer had contacted him and warned that such statements could result in legal action.
Then she uses the general doubts about FC to attack other, specific self-advocates.
Finally, we get to the political attack against all autistic people who dare to speak for ourselves:
Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world. This latter position is espoused by the autism rights movement, also called the neurodiversity movement, which has evolved over the past two decades from an ad-hoc association of individuals with high-functioning autism or Asperger’s syndrome and their families into a powerful lobby led by organizations such as Autistic Self-Advocacy Network and Autism Network International. ANI’s founder, Jim Sinclair, wrote the famous 1993 essay “Don’t Mourn for Us,” which accused parents who long to cure their children’s autism of really hoping “that one day we will cease to be, and strangers you can love will move in behind our faces.” Today, neurodiversity activists sit on the Interagency Autism Coordinating Committee (which advises the National Institutes of Health on how to allocate its autism research budget) and the National Council on Disability.
See? You can't let autistic people on important things like boards! They're all fakes! They have a dangerous agenda of taking money away from the people who really need it-- the parents of very visibly disabled children-- and wasting it on selfish faker grown ups.
So says Alison Singer of the Autism Science Foundation:
On a political level, “neurodiversity advocates have definitely succeeded in implementing their agenda,” says Alison Singer, founder of Autism Science Foundation and a member of the Interagency Autism Coordinating Committee. “You can see it in the strategic plan [of IACC]—there are more studies focused on higher-functioning adults and the services they need, such as finding employment. But because we’re reallocating money, not increasing the budget, that means shifting funds away from the needs of lower-functioning children, who need treatments, for example, to help them control self-injurious behaviors.” And that shift may become more pronounced once the new edition of the Diagnostic and Statistical Manual of Mental Disorders is published in May. By eliminating the Asperger’s syndrome diagnosis, as the DSM-V is expected to do, and redirecting all those high-functioning individuals into the autism diagnosis, the overall percentage of low-functioning autistics will drop—making it even easier for the high-functioning lobby to shunt aside those who might technically share the same diagnosis but have completely different needs.
So what happens to neurodiversity if its lower-functioning supporters are discredited? The movement is exposed for what it is: a group of high-functioning individuals opposed to medical research that, as Singer puts it, “they don’t need, but my daughter does. If she were able to function at their level, I would consider her cured."
I will never understand why people give Alison Singer money.
Or why the Autism Science Foundation lets her talk in public.
I would say that love is the extra effort you make in your dealings with people whom you do not like.
The retro-diagnosis thing is more complex than we want to admit. Some people want to state definitively that a long dead figure like Mozart had Asperger's syndrome, and that seems silly to me. Others have a lot invested in denying that someone like Albert Einstein, whose biography is well-documented and is entirely consistent with diagnosable autism, should not be claimed by autistic people as our own, either, and that seems just as silly.
When the National Portrait Gallery did the first exhibit of art by gay American artists and with subjects related to sexual difference, it was called Hide/Seek, and that is the approach those of us with autism must also take to our history: our autistic ancestors needed to hide for survival, or simply did not have a name for the difference that was them, so, in order to have a sense of our past, we need to seek them out.
We must never be shamed by our need to do this.
We should never be too definite in our claims.
It's not surprising to me that some of our gay pioneers, like Alan Turing, also had autism. Their rigidity may have prevented them from compromising into a heterosexual life, as most gay men throughout history have. Their social awkwardness may have led them to be obvious about things that others kept safely hidden. There is some talk of people on the autism spectrum also being more likely to be LGBTQ, but I'm not sure I buy it. I think it may just be harder for autistic people to hide or ignore other differences.
And all of this leads me to this question: doesn't Quentin Crisp seem autistic?
It's easier for me to pose than not.
This video is from 1971. Crisp had been living as an openly, flamboyantly gay man for forty years when it was made.
You will notice that he sounds more homophobic than anyone you would see on TV today. This is what the self-hatred of internalized bigotry sounds like. It's a sound I would like you to learn to recognize, because we all make it from time to time.
People were frequently annoyed with Crisp because, once he had found a clever thing to say he tended to say it over and over.
He lived in the same room, which he never cleaned ("the dust doesn't get worse after four years").
He lived on powdered health drink from the drugstore and the free stuff he got at parties in order to avoid the grocery store.
And does this sound a little like some of our autistic friends:
I couldn't really say that I believe in human relatonships.I know they exist. But I couldn't say that they're a thing to be sought.
And this is something I may actually start saying to people at social occasions:
I've come to the end of my personality, and now, if I want anything, it's peace.
1. One of the things I did that so infuriated a subset of the online autism parent community last week was publish the name of someone who did something that upset me. There was, I think, a good reason for some of their reaction: it was a violation of a social convention to take something said in a Facebook group and publish it here. Of course, this is exactly the sort of code which is both meaningless and actually invisible to me. But-- I did violate that convention, and I should not have. If I had been aware of it at the time (I have been before, it didn't stick) I would not have. I am sorry for that.
But most of the time I believe in naming names. It's part of writing ethically for me. I say who am writing about. I quote them. I link to their work. There is sometimes an element of public shaming intended in this, but mostly, it's about being fair. If I write about "parent bloggers" and don't include specific examples, I can exaggerate without meaning to. I cite my sources. It keeps me honest.
And it allows them to speak for themselves. It lets you look at what they said, put it back in context, and make your own judgment.
There's a lot to value in this piece, and it was a good "theory of mind" workout for me to read it, but it is hurt almost fatally by the writer's decision that she did not have to support any of the accusations she made about what autistic self-advocates say with specific quotations. She needed to name names in order to keep herself from making a strawman argument.
So-- I'll keep naming names. But I will try to be more careful about it.
2. I've been thinking a lot about the animated Steven Pinker lecture above and wondering if it does not have something to do with the difference between my reaction to naming names and the reactions of the mostly NT people who have been bothered by it. He explains some possible reasoning drawn from linguistics for why it is more polite to be less direct with our speech. Keeping things vague with language also keeps relationship status vague, and this is often safer and more comfortable.
But what about those of us who actually cannot understand unless language and relationships are made explicit?
I hope you'll watch the video and think about it, because it's helping me to understand a lot about why people find me rude when I don't mean to be, and why I feel like people are being tricky when they intend to be polite.