When Advocacy Means Taking It On the Chin

One of the most painful parts of any kind of advocacy work, for me, is having to call out a person who just doesn't get it (just doesn't get it yet, one would hope). It's even harder when that person is a beloved community member. But ... that doesn't mean they can't stumble, and badly. That happened yesterday when Rob Gorski of Lost and Tired published his autism opinion piece Autism is NOT one size fits all, in which he attempted to call for community but actually ended up reinforcing some fairly harmful stereotypes about people with autism, as well as divisions between autism and Asperger's. Which Emily Willingham called him on, and rightfully so.

Thing is, it's completely fair to say that my son's experience as a non-conversational person with intense autism is not the same as those of Aspergians like Alex Plank or Rudy Simone. We should absolutely be true to our own experiences, and to that end I implore you to read Kyra Anderson's brilliant meditation on autism parenting and autism diversity and inclusivity and open dialogue, Bring Everyone Out.

But it is rarely helpful to make those differences dividing lines or points of contention, because focusing on them obscures a critical commonality: every last person with autism or Asperger's -- no matter their node on the spectrum, no matter how "high functioning" you perceive them as being or whether you think they can "pass" -- has that diagnosis because of intense challenges in at least one area, usually more. I recommend reading Steve Silberman's recently published interview with Ari Ne'eman, specifically the passage:

"Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are."

Autism and Asperger's are the same universe. Anyone who thinks differently has not spent enough time participating in the wider autism community.

The real issue is that Rob is seen by many as a role model for autism parenting -- and if his opinion has influence, and that opinion is actually damaging to autism communities rather than constructive, then we can't stand by and excuse him because of the separate issue of his personal life being so stressful. That's the hard truth of real advocacy, and it sucks.

I think we all empathize with Rob, and we want to support him and his family the best we can -- to that end, we have featured his writing on Thinking Person's Guide to Autism, and I encourage you to visit the Move the Gorskis campaign page.

I don't envy Emily for the blowback she's received for being willing to call Rob out -- his readers are very protective of him, which is understandable. Their emotional investment, and the fact that even deserved criticism can feel like an attack, makes it hard to accept the fact that his opinion piece, though heartfelt, was badly misguided.

Holly Robinson Peete: Autism Style, Towards Clarity and Grace

I wish Jenny McCarthy would use her celebrity to fight for all autism families who need support. It's infuriating when she promotes her extremist viewpoints as majority autism community opinions, when she sullies autism parents' reputations by belittling mainstream doctors and scientists, and when she uses intimidation and fearmongering to divide our community. I resent her campaigning for "recovery" as the only worthy autism goal, her refusal to advocate for all families with autism. I really wish she had the compassion to be a hope bearer for all our children.

Thankfully, Holly Robinson Peete is more than willing to speak up for the rest of us. And she has done so graciously -- applauding Jenny's spunk and tenacity -- while declaring that it's time to "share the spotlight with other often overshadowed issues that profoundly impact [autism] families daily." What a relief to read unflinching statements like:

"....so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to..."

"...the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention."

"Autism is not a divorce mandate."

"The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood."

"Autism Advocates Who Actually Have Autism: What a concept! ...  I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that."

How refreshing, how delightful, to hear a real autism advocate's voice in the Huffington Post!

Ms. Robinson Peete's article is especially appreciated because it comes on the heels of a typical HuffPo Jenny rant. In Who's Afraid of the Truth About Autism, Ms. McCarthy went into full spin-and-attack mode, attempting to re-inspire her believers after an avalanche of formal, high profile decisions destroyed several pillars of the long-derided vaccines-cause-autism theory. (And mere days after Jenny's HuffPo piece, three additional rulings found no link between autism and vaccines.) The Who's Afraid... post is full of standard, inflammatory Jenny accusations such as:

"Who's afraid of autism recovery? Perhaps it's the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition."

Well, I am afraid of celebrities who use their influence to peddle unsubstantiated and extremely expensive alternative autism "recovery" claims to frightened parents whose children who will mostly not be helped.

Parents need calm, rational advice to help them avoid such "autism cult" thinking. To reassure them that it's Jenny and Co. who consider "unrecovered" autism hopeless, not the other autism professionals and parents -- we're too busy rejecting any kind of "hopeless" thinking, too busy supporting our children, too busy fighting for their rights, for their visibility, and for their acceptance, quirks and all.

I think Holly Robinson Peete may get what our autism families need. I really hope so. And I look forward to seeing just how high she can raise that beacon of hope.

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As of this writing, Jenny McCarthy's Who's Afraid of the Truth About Autism post has over 3,000 comments. Here's one of the keepers, by jim65, whom I'd like to thank for summarizing my own thoughts so clearly:

...[antivaccinationist commenters], this is for you. You may really *feel* like you're rallying around a just cause. You might really *want* to be making a difference.

You're doing it wrong.

If you want to get involved in autism research, then go to school, get an education, and get in a lab. If that's not what you want to do, then leave the science to the scientists, and get involved in your local autistic community. Volunteer. Donate. Raise general awareness. I'm pretty sure you mean well, but the fact is, all you are doing is confusing the folks that don't know any better, dividing the community as a whole, perpetuating a myth, and putting thousands of children a year at risk because their parents bought some of this bad science from someone like you who sounds like they know what they're talking about.

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P.S. I swear I will write about our My Baby Rides the Short Bus KQED Forum interview and readings later today!