Susan's Blog

Wednesday, January 15, 2014

What’s Wright and Wrong about Autism Speaks

Tonight I attended a debut of the John Block documentary for Autism Speaks, “Sounding the Alarm.” Mass General Lurie Center for Autism hosted. The film was mostly what I expected — a combination of scientists with findings or inquiries, sometimes frightening, sometimes heartening, folded in with examples of families (very difficultly) living with autism, mixed in with Suzanne, Bob, or Katie Wright expressing their own perspective and goals. The movie began and ended with Suzanne, giving the emotional grandmother’s view, sincerely articulating her pain and her hopes for Christian, her grandson. Katie illustrated the mother’s side — articulately, beautifully, and stirring my tears more than once.

I did not, however, expect to be so pleasantly surprised by Bob Wright — I assumed he was going to go for the same emotional tone as his wife and his daughter, (and I am not judging that). But frequently when he spoke, he would be discussing something that had me nodding my head in agreement or at least feeling like he was making a legitimate point. Most of what he talked about is what needs to be done legislatively and in terms of access to healthcare, which is true. He grounded most of his talking points in the most scary kinds of statistics and the most mainstream recommendations, such as when he said, “If you act quickly, there’s like a 50% probability that the child can matriculate from a public HS…” Here he was making the argument for early intervention — who could argue with that — but unfortunately most of his knowledge there was based on ABA as opposed to any other kinds of educational approaches. (cont.)

My digression into a critique on autism techniques and educational approaches:

I’m not against ABA, it has its place, but only if the reinforcement is positive and if the practitioners are respectful of the student. It bothered me, however, that so often the teachers in the film were shown speaking loudly for the child’s attention, redirecting hands-on, while the child sat in a brightly lit room with Meyer-Johnson like symbolic picture cards everywhere.

I think that in Autism 101, educators and anyone working with an autistic person should check for overly bright lights, florescent flickering, jarring contrasts, loud tones of voice before they even begin. They should keep a stash of light colored sunglasses for kids to try out to help shield them from distracting or overstimulating glare from paper or from letters on paper, and for stupid florescent light bulbs. There should be carpeting, perhaps, but only if it is hypoallergenic. Check for weird smells in the room, too. And maybe even consider whether this child requires symbolic pictures at all, or perhaps simply photos of things would do? If an autistic person has difficulty generalizing, why do we want him thinking that people are supposed to be stick figures? Furthermore, the educators in the film by and large seemed not at all interested in figuring out why the child was distracted or not willing to look. I’d like to see more respect paid to sensory issues like eye contact being painful, or finding out why the kid has his hands over his ears? Maybe he should not be approached directly or have a hug demanded of him.  My point is, no wonder so many of the children shown in the film were upset; as well-meaning and loving as the parents and staff were, they might have been missing some very important cues from the child. Let the kid chew on stuff if it helps with sensory organization.

Also: consider floortime, and other approaches that aim at connecting with the student from where he is. Don’t be Ableist, don’t assume you have all the answers. Even though you are educated and seasoned in the world, you still have a unique individual in front of you. Respect that.

For God’s sake, this is a neurologically different person, there is no fixing that. Just find ways to connect and work with him.

For me, if all else fails, I ask myself, “What would Nat think of this?”

(Back to Bob Wright and the movie): What I liked best about Bob Wright was his insistence that we engage our legislators in terms of insurance equity for autism treatments and therapies. He said, “The thing that so upsets me is that half the population has coverage through corporations and yet Congress has failed to act on the large corporations or for their own employees in terms of insurance. Congress has yet to move on this issue.” I also liked the way he emphasized the black hole that opens up when many of our guys turn 22 and have to leave school. The film showed Bob testifying in front of Congressmen a number of times, to his credit.

I don’t have notes on who quoted this Harvard study finding, “Lifetime societal cost is 3.2 million per person if they don’t get the treatment they need.” They did not qualify what sorts of challenges each 3.2 million dollar person is facing — are we to assume that every single person on the Spectrum would cost this much to support? That can’t be accurate. This is a typical Autism Speaks strategy, to use numeric data to scare people into taking notice.  There’s some truth, in that we definitely do need funding to educate, job train, teach ADL’s to, and support people with disabilities, but there’s a lot of hyperbole, too.

This is not to say that they are wrong. For many many families dealing with autism, they are right: it is a lot of money to buy respite care, therapy, one-to-one ABA for 30-40 hours a week. It is heartbreaking watching a child regress, as Christian Wright apparently did. By 19 months he had lost most of his skills, according to Bob. This certainly is tragic; I do not blame them one bit for expressing their agony and I give them a lot of credit for turning that despair into a multi-million dollar organization that does indeed do a lot of good.  In 2013 alone the AS budget for family services was $8million. Sure, I’d like to see that tripled for services but I’m not a Wright. I’m not Wrong either, though.

Later on during the q&A I did make the request that they shift even more of their huge pot to services and housing for adults; after all, the film quoted that 500,000 people would be aging out of the schools in the next ten years. 50,000 a year, in need of supports and jobs. Not to mention housing. So, yes, I think AS is top-heavy in their emphasis on research rather than family services. But I did not found the organization, so I don’t get a vote. And yes, AS spends something like 40% of their revenue on raising awareness with efforts like this movie; but that’s how they make all the money that they then do a lot of good with. I merely urged them to do even more in the supports and services arena.

The worst thing in the movie was the mom who said that she could not trust her son to strangers because “Most days I want to kill him. And I love him. How is someone else going to have the patience?”  This is the kind of lurid language that Autism Speaks will use to get donor’s and the public’s attention, but it is very damaging to say this. A lot of people hear this as a way of condoning violence towards autistic people. I know this mom did not mean it that way, but given the violence against autistics in the press lately, it is insensitive if not monstrous and outrageously irresponsible for them to have left that bit in the film. On another level, it is disrespectful to her son to be spoken of in this way.

Okay, well, people have the right to talk about how difficult their kids are. But how about praising all the stuff they can do? There was only one part of the film that showed autistic people succeeding and happy: when they talked about employment. The film showed Andrew D’Eri, a father in Florida who opened a car wash with 35 autistic adults who make up 85% of the staff. His business is thriving. “That makes me feel happy,”  he said. Guys like D’Eri make it look easy and natural to just do it, but we all know that starting a business is anything but simple. Several of the autistic workers were asked what they liked about the job, and here are some of their answers:

“Can’t beat the hours, the money”

“Tire shining”

“Making new friends”

“I was excited when I got the job”

“If I wasn’t working here I’d be sitting at home… I’ve applied to so many jobs and they won’t hire me.”

That last quote had me by the throat. I think the film and maybe even Autism Speaks would be even more successful at getting people’s attention if they were to show more of this positive stuff happening. Isn’t it true that you catch more flies with honey than vinegar? I think that if Autism Speaks could shift out of the catastrophe talk — but not invalidate the parents’ suffering — and move into the success stories, they would have more support in the entire autism community.

So maybe it’s time to evolve out of Alarm and Awareness, and move to Support and Success.

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