Why Do Autism "Experts" Say Such Awful Things?

“There is no human life that is more sacred than another—every human life is sacred.” - Pope Francis

You want to break my heart? Show me the latest mainstream media piece about autism written by or featuring quotes from a non-autistic autism expert. Almost without exception, that expert is going to say something that self-righteously dehumanizes, endangers, invokes pity for, or degrades my autistic son. My beloved, delightful, innocent son—who has done nothing to deserve such scorn.

Maybe you can understand, now, why my heart never stops breaking.

 


 

The last few months in particular have been banner ones for “autism experts” telling the world to fear, patronize, or ignore autistic people. You think I’m kidding? Consider one of the many incredibly offensive things Autism Speaks co-founder Suzanne Wright said in her audience with Pope Francis last month, under the guise of asking for compassion:

“Autism is forcing parents and caregivers to slow down the frenetic pace of our modern world and look into the eyes of our loved ones, as Saint Francis did with the leper.”

That’s right. Ms. Wright told Everyone's Favorite Pope that autism forces parents like me to become saints, because we parent kids she considers disease victims (except, autism is not a disease), while ignoring the well-documented fact that our autistic loved ones often have a marked aversion to having people look in their eyes—a fact Ms. Wright should have damn well learned by now.

Her description of autistic people like my son as both holy fools and a burdens is just one example of unbearable media representations of autism. Just one of many Autism Speaks examples. Just one of the Autism Speaks examples from the past month, if you can believe it. Consider also AS's recent, misguided "#Mssng" campaign, which The Autistic Self-Advocacy Network protested, immediately:

"Autism Speaks is having their own Hashtag event called “#Mssng” in support of the Ten Thousand Genomes Project between Google and Autism Speaks. They are asking people to take the vowels out of their usernames to represent the “missing pieces” of the “Autism Puzzle.”

"[But] here’s the thing: we are #NotMssng! Autistic people are here, right now. We are not missing pieces, and are whole people just as we are. Being autistic doesn’t mean we are missing some essential part of being human, it just means that we need support and acceptance."

Why do so few people ever consider how autistic people might feel when others write or say hurtful things about them? I'm convinced it's because we live in a society that rarely portrays people with disabilities as having the same rights or feelings as anyone else. I'm convinced that it wouldn't occur to most people from outside the disability community  to argue with an "expert" who frames people with disabilities as a burden on society or parents.

And so the cycle of debasement and heart-breaking continues. And so I despair of ever living in a society that can be trusted to treat my son the way he deserves, outside our tight circles of friends, family, and support.

And that is why I'm not surprised when parents of autistic kids who come from outside the disability community  trust people like Suzanne Wright, and never question the effects of her action on autistic people.  She's assumed to be helping even though she's actually harming. This means too many autism parents let experts like her, nay, praise experts like her, for producing horrible, misinformed messages and articles about autism.

Many autism parents write distressing autism articles themselves, as did Columbia professor, novelist, and The Atlantic contributor Marie Myung-Ok Lee did at Salon.com last month, in response the brief media circus concerning Jerry Seinfield's tentative-then-retracted public musings about being autistic. Who would question someone with her credentials, and given that her autistic son, like mine, requires full-time support? Yet some of the autism misinformation greatest hits Lee listed include:

  • Claiming there's an autism epidemic (no, there isn't)
  • Claiming autism used to be rare (technically, but autistic people have always been here; it's the diagnostic criteria for autism that have changed and expanded several times in the past few decades)
  • Claiming that when parents kill their autistic kids it's evidence of a looming crisis, when such incidents are tragic and headline-grabbing but uncommon, and when what we actually need to work on is reaching parents who fear autism due to relentless horror-show media and "awareness" messaging, as well as people in disabled kids' lives who internalize negativity about autism and disability so pervasively that they don’t notice when parents show warning signs of being a danger to their own child
  • Fear mongering about the costs of raising an autistic child (yes, autistic kids need lots of supports, but all kids deserve to have their needs met, and the fact that raising an autistic child can become financially difficult is an American social policy failure)
  • Invoking what is fast becoming the Godwin’s Law of autism, which is that all epidemic-focused autism discussions will eventually involve some sort of comparison of autism to cancer
  • Citing Andrew Solomon's misguided autism chapter from his otherwise thoughtful book, Far From the Tree, as illuminating regarding "the lives of parents of kids with severe autism," without considering how Solomon publicly and pitilessly shames the featured autistic kids themselves in the name of "honesty"
  • Grousing about the prominence of high-profile autistic people, because it might make other people believe that autism is a cakewalk for autistic people who can "pass" (more misinformation, by the way), so they might not accommodate the needs of high support autistic kids like her son and mine.

That final disconnect—that "those autistic people are Not Like My Child" assertion—is common, but ignorant. It persists because people keep relying on autism "experts" instead of looking to the experts on living autistic lives: autistic people. Who are usually completely open about how much they have in common with high support autistic kids, as John Elder Robison writes:

"I often hear that head-banging, biting, and aggressive behavior sets some autistics apart from me. Why? I smashed holes in my walls as a kid, with my head. And I bit. When you ask yourself why we would do that, “being autistic” is not the answer. The answer is frustration combined with cognitive challenges. Communicate with those people successfully, respect them, understand and help with their challenges, and most of those behaviors will moderate. Do I presume to answer for every single case? Of course not, but I’m confident there is a lot of truth in that philosophy."

Autistic commonalities stories like Mr. Robison's are neither rare nor hard to find. Yet autism "experts" usually ignore them. Some, like electroconvulsive therapy-for-autism proponent Amy Lutz, take their ignorance to another level entirely, arguing at Psychology Today that autistic adults who condemn murderers of disabled children only do so because they never had to deal with “extreme caregiving.”

Right. It couldn't be that, due to autistic people's life experience as people with disabilities, or possibly even due to possessing basic human decency, they want autistic kids who need intensive 1:1 support to be considered people, rather than homicide-triggering millstones.

In her own response to last month's Seinfield brouhaha, Lutz (at Psychology Today once more) even brings in Autism Science Foundation president Alison Singer to shore up the argument that autistic self-advocates are diverting pity thunder away from high-support autistic kids:

“If autistic self-advocates are so proud of their autism, they can keep the term. We could then choose a new word to describe the type of autism that is relentless, aggressive, abusive, painful, constant and overwhelming.”

That last expert statement is particularly painful, given that Singer's foundation once awarded me a grant that paid my way to the International Meeting for Autism Research. You see why my heart keeps breaking, when it comes to autism "experts" who truly have my son's back. There are so damn few of them. Even that reliable geek tonic, Radiolab, completely blew it with most of the experts they selected for their recent autism episode. Even Radiolab. That one really hurt.

The relentless, dehumanizing "expert" negativity and ignorance is why I am grateful for reliable experts like parent and scientist Matt Carey of Left Brain/Right Brain, who counters the post-Seinfield Not Like My Child fury beautifully:

"There is a place for advocates who have a very narrow focus. Say, only autistics with intellectual disability or only self-advocates. But when you take that to the level of claiming that we should split the community over some “war”, you are doing harm. The strongest advocates are those who see beyond their own self interests, who advocate for those in the community whose needs differ from one’s own self-interest (even if that “self” interest is in supporting a loved one).

"Or, to put it simply, I expect that self-advocates will support advocacy that directly benefits kids and adults who require 24 hour support, like my kid. Just as I think self advocates deserve advocacy support from parents like myself."

I'm not convinced the mainstream media is going to learn its lessons about autism, autism experts, and treating autistic people fairly, any time soon. But I have some hope:

So I have hope for my son and the world he will inherit. But I also have a heart that's been broken by autism "experts" so many times I fear it will never mend.

---

Shannon Des Roches Rosa goes on rants like this in three different places: ThinkingAutismGuide.com, BlogHer.com, and  Squidalicious.com.

This is an article written by a member of the SheKnows Community. The SheKnows editorial team has not edited, vetted or endorsed the content of this post. Want to join our amazing community and share your own story? Sign up here.
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