Sunday, November 24, 2013

Who Speaks for Autism?

About a week ago, best-selling author and autism self-advocate John Elder Robison resigned his position with Autism Speaks in protest over an op-ed piece written by co-founder Susan Wright on the eve of Autism Speaks' first-ever national policy and action summit in Washington, DC.

Autism Speaks is the premier autism advocacy group in the United States, and Robison, who has High Functioning Autism, had served as a member of its Scientific Advisory and Scientific Treatment Board. What upset Robison about Wright’s Op-Ed was her emphasis on the challenges autistic children pose to their parents and society. Autism, he writes

confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

Many autistic people are aware of this dichotomy. Some of us feel “totally disabled” and others feel “totally gifted.” Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.
Robison’s sympathies lie squarely with his “we”/“us”:
I support the idea of changing society to make it more accommodating for people who are different. I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people. I know how hard life is for some on the spectrum, but I also see the gifts other autistics bring…

If I act a bit different because I’m autistic, I think it’s my right to do so without being mocked, bullied, or discriminated against.
Not that Robison renounces responsibility for his own behavior:
At the same time I realize people are people, and if I act like a jerk, I will be treated as one. I understand I have a responsibility to learn how to behave in ways others will find acceptable or even appealing.
And so, he implies, does Autism Speaks:
I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.
Here are the offending excerpts in Wright’s Op-Ed:
Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.

This is autism.

Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.

This is autism.

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.

Maybe they have been up all night caring for their teenage child who’s having a seizure.

Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.

Maybe their child has been trying to bite them or themselves.

Maybe they can’t afford the trip to a doctor specializing in autism.

Maybe there is a waiting-list for ABA, speech and OT.

Maybe their insurance won’t pay.

Maybe they don’t have the money to pay a special lawyer to fight for school services.


What I described above is really just the beginning. In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day.

And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?

And, if they do – who cares for these children?

How about in school? Is there a national curriculum for our children? Are we encouraging teachers around the country to share with each other lesson plans and methods that work for them? Is there collaboration?

Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime, and it will be well over $137 billion dollars for all our children. …

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

This is a national emergency. We need a national autism plan – NOW.
Anyone who thinks that the nightmare scenarios Wright is evoking are exaggerated, or that it can’t possibly be this challenging to raise an autistic child, needs to read a memoir like “The Small Outsider,” “Mixed Blessings,” “When Snow Turns to Rain,” or one of Josh Greenfeld’s “Noah Books,” and put themselves in the shoes of one of these parents, whose daily experiences make even my most difficult moments with J feel like child’s play.

Anyone who, on the other hand, thinks that autism brings only challenges and impairments needs to meet people like Temple Grandin, Tim Page, and, yes, John Elder Robison.

It’s easy to see why Wright’s words are highly offensive to people at the mild end of the autistic spectrum. It’s also easy to see why Wright is focusing on the most challenging cases, and acting as if these are the only cases out there, in her call for national action. And it’s easy to see why Robison, along with his “we”/”us,” is focusing on those at the milder end of the autistic spectrum.

It’s easy to see these things, that is, if you have the luxury of being able to step back and put yourself in someone else's shoes. But, just as with autism, so, too, with autism advocacy: the core problem involves precisely this kind of empathy. Autistic self-advocates, in spite of how high functioning they are, and parents of highly challenging autistic children, because of how overwhelmed they are, have difficulty imagining other people’s perspectives. Nor should the rest of us be expecting them to—in general.

But those parents and self-advocates who decide to engage in public advocacy on behalf of the entire autistic community need to acknowledge that this community contains a diversity of individuals that extends beyond their personal experiences and perspectives.

Robison, it should be noted, does at least acknowledge the diversity among individuals with autism:
There is a great diversity in our community, which means we have a very broad range of needs.
But notably absent from his discussion of “our” needs is any mention of family members. Here, too, there is both great diversity, and an enormous number of unmet needs.

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