Left Brain Right Brain

I know a lot of people will read the title of this post and say, “that’s obvious”. But keep in mind–studies give people a chance to advocate better. Now for the limitations–the study was only on individuals who did not have difficulties in areas of daily living skills. And, yes, the study population did not have intellectual disability.

But with all that, here’s the sentence I’ll highlight from the abstract: “Participating in society was identified as the only factor predicting life satisfaction in individuals with ASD.”

Here is the pubmed link
Psychosocial Functioning and Life Satisfaction in Adults With Autism Spectrum Disorder Without Intellectual Impairment.

and here is the abstract:

OBJECTIVES:
This study aimed at (a) comparing psychosocial functioning and life satisfaction in adults with autism spectrum disorder (ASD) and nonclinical participants and (b) identifying areas of functioning that are most predictive for life satisfaction in individuals with ASD.
METHOD:
A total of 43 adults with ASD without intellectual impairment (age: mean = 31, standard deviation = 10 years; 63% females) and healthy nonclinical individuals (N = 44) were surveyed.
RESULTS:
Individuals with ASD reported significant functional impairments and less life satisfaction compared with nonclinical individuals in many areas of life. Although impairments were prominent in domains involving interaction with other people such as understanding and communication, getting along with others, and participation in society, daily living skills (e.g., getting around, self-care, and household) were not different from nonclinical participants. Participating in society was identified as the only factor predicting life satisfaction in individuals with ASD.
CONCLUSION:
There is a need for interventions facilitating functioning on a broad level and support toward societal inclusion for individuals with ASD.

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By Matt Carey

An actor in a major musical production has a facebook post about a recent performance. In this performance, an autistic child made noise during a quiet part of the show. And Mr. Loh comes to the defense of the child.

The post begins:

I am angry and sad.
Just got off stage from today’s matinee and yes, something happened. Someone brought their autistic child to the theater.
That being said- this post won’t go the way you think it will.
You think I will admonish that mother for bringing a child who yelped during a quiet moment in the show. You think I will herald an audience that yelled at this mother for bringing their child to the theater. You think that I will have sympathy for my own company whose performances were disturbed from a foreign sound coming from in front of them.
No.
Instead, I ask you- when did we as theater people, performers and audience members become so concerned with our own experience that we lose compassion for others?

Mr. Loh quotes Joseph Papp that theater is created for all people. It’s a message that resonates with my family. We have worked to make the theater experience accessible to our own child and also to other disabled people in our community. I am proud to say that my wife started on this effort even before the idea of a “sensory friendly” performance became big news. Proud not because she was ahead of the curve, but because this shows that this is an effort of passion on her part.

Mr. Loh, I thank you. Theater is for everyone.

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By Matt Carey

Author Steve Silberman (author of Neurotribes) was interviewed in New York Magazine recently: The Problematic Obsession With ‘Curing’ Autism. Mr. Silberman has been interviewed a lot recently as his best selling book (Neurotribes) has rolled out, so one might wonder why I’m focused on this particular interview. Well, as it turns out, one statement clearly and concisely addresses many of the misconceptions (read straw man arguments) that people make about the neurodiversity movement.

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.”

If you are unfamiliar with the discussion, let me explain. Many of those who criticize the neurodiversity movement claim that the neurodiversity movement denies that autism is a disability.

If one wants to hunt down autism misinformation, a good first place to look is the blog “The Age of Autism”. So, I went to google, search silberman site:ageofautism.com, and read. Top of the list, an article titled “Autism Speaks vs. Steve Silberman”. Search the page for “disability” and get–

NO ONE CAN TELL US. We’re absolutely paralyzed by autism. We have the view of neurodiversity people who look at autism not as a disability, but as just another way of seeing the world.

See the difference? According to the Age of Autism writer, “neurodiversity people who look at autism not as a disability”. But, as Mr. Silberman tells us, it is precisely because we need to see autism as a disability in order to move forward on the making achievable improvements in the lives of autistic. (And not view autism some passing phase for a child, should we just find the correct industrial chemical to sprinkle on their gluten free waffles, as the Age of Autism would have it).

Go to the next article in the google search and one finds

The coverage below is very convincing. People who haven’t looked into the issues involved here might think Steve Silberman makes sense. So, if all the autism is really due to a broader definition and better diagnosing, shouldn’t we just recognize and provide for this minority of unique people among us? Calling autism a disability is really an insult.

In another article, the Age of Autism writes “Unless and until people like Steve Silberman can show us the one in 68 autistic adults out there, his book is fantasy fiction.”

And there you see the reason why AoA doesn’t like Mr. Silberman or his views. Because Mr. Silberman lays out in detail why we should listen to the man who discovered autism (Hans Asperger) and accept that autism is not new. If autism is not new, then the Age of Autism “The Daily Web Newspaper of the Autism Epidemic” (read, we exist to promote the idea that vaccines-cause autism) would be built on a false premise.

Which it is.

By the way, those details that Mr. Silberman lays out are ones which apparently the writers at the Age of Autism don’t have the time to read, as there’s no evidence anyone there critiquing his book has actually read it. Seriously, the articles are all based on interviews and reviews of the book rather than the book itself.

And we are left with the irony of the Age of Autism (a strong proponent of the failed idea that vaccines cause autism and that pretty much anything touted as a “cure” for autism should be purchased by parents and subjected to disabled children) calling something “fantasy fiction”.

Pointing out that the Age of Autism is wrong can be a full time job. Or at least a daily exercise in that the are pretty much always wrong. So, why bother now? Because, once again, I felt that Mr. Silberman spelled out one aspect of the neurodiversity movement so well. So well, in fact, that I will copy that paragraph here:

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.”

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By Matt Carey

After the end of the California legislative session last week I was very curious as to how the budget battle went. We’ve been working to get funding restored for developmental services here and there was a big push to get this included before the legislature recessed.

But I couldn’t find information over the weekend. Thankfully an email came out today from Greg deGiere at The Arc & United Cerebral Palsy California Collaboration.

Short version–the restoration of the developmental services funding was not added to the budget but–and this is big–the legislative special session didn’t end.

Which means–the fight goes on. We will need calls, tweets, etc. in the future.

Here’s the email.

Dear Friends,

So what happened in the Capitol last week in the fight to save our developmental services?

The bad news is that the Legislature didn’t take any action before going home Friday night. The final push stalled by the end of the day, leading to the Democrats and Republicans angrily blaming each other for why they still couldn’t do anything for our community.

The good news is that they didn’t adjourn the special legislative session Friday as they had planned to — so the Legislature will officially be in session even though they aren’t here, and the legislators can be called back to Sacramento to vote if there’s a deal. And they created a Senate-Assembly conference committee with members of both parties to work on it this fall.

The other good news is that our community has built more political power — and put it into action in the Capitol on this — than I’ve seen any time in my almost seven years as a professional advocate for you.

Thanks to our community’s united effort for the last year, climaxing with a flood of calls to key legislators last week, every senator and assemblymember now is painfully aware of the problem and that we need to fix it before the system completely collapses. And they all feel pressure from the voters they represent to get it done this year. When they start complaining about how many calls they got, you know we have their attention.

Senator Ed Hernandez, who led the charge for us at the end, will be on the Senate-Assembly committee. So will Assemblymember Rob Bonta, who we know gets it and who put his vote where is mouth is in the budget process in June. We don’t know who else will be on the committee.

So the outcome is that our service system will continue to disintegrate while the fight go on.

One potentially very positive development last week was that Senator Hernandez said that his goal is for the Legislature to develop a bill to solve the problem and pass it to the governor for his signature or veto – the first time a legislative leader has publicly acknowledged that they should pass a bill whether Jerry Brown likes it or not. And since it will likely be a comprehensive bill that also fixes the MediCal funding program, which Brown wants a lot, it’s very unlikely he would veto it over our relatively small piece.

By the end of the night Friday, I was as angry as everybody else around here. Even after some rest this weekend, I still get mad when I think much about it. But the fact is that we’re getting closer to a real solution, and the key is to keep up the pressure – not give in to cynicism and fatigue, no matter how tempting.

So you’ll be hearing more from us in the coming weeks.

And thank you for your advocacy.

Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814

As I’ve noted a few times already, the taped conversations between William Thompson at the CDC and Brian Hooker, proponent of the failed autism/vaccine notion, are very telling. There are certainly aspects of these conversations which I doubt Mr. Hooker’s team would like to be made public (and, as we will see, may be keeping out of the public eye). For example, when Hooker pressed Thompson to state that the CDC team worked to dilute an apparent association between the MMR vaccine and autism, Mr. Thompson declined (discussed here).

Here’s another statement by Mr. Thompson. This time it is in relation to Mark and David Geier, a father/son team that has written a great deal of junk science trying to promote the idea that thimerosal in vaccines and autism are linked. The Geiers have been criticized in many venues, being called “intellectually dishonest” as one of the more polite ways of characterizing their work. Brian Hooker relies upon the Geiers for his own beliefs about autism and thimerosal and even calls the Geiers his friends.

Dr. Thompson: But it’s a marketing thing. It’s a marketing thing. You have to figure out how to market this. And this has to come from other voices, it can’t just come from you because you…they made you the poster boy of, they want to portray you as crazy and you know um, and honestly I think, you’ve been persistent. You have been right most of the time. I will say the Geiers were not right and the Geiers…you know the Geiers; I do not know them personally. But, I know the things they did. They took exact copies of papers we wrote and published them under their own names. Word for word and I just thought that [UI].

Want to bet this quote doesn’t end up in the “documentary” Andrew Wakefield is making on Thompson?

[UI] likely means unintelligible. As in, “we can’t provide the transcript here because we can’t understand the recording.” I really have to wonder if [UI] means, “Thompson harshed on the Geiers even more and we decided to edit here.”

Who knows. We have enough to see that Thompson clearly thought the Geiers were wrong. And calls them out for their unethical attempt at getting a paper by copying the CDC’s team’s work.

There’s a list of papers out there that people claim shows there’s a link between vaccines and autism. I bet a lot of papers on that list are authored by the Geiers. And even their own hero, the “CDC Whistleblower” calls those papers out as junk.

The Geiers–the team that claimed that chemical castration was an autism treatment–criticized by Mark Blaxill* (another vocal proponent of the idea that vaccines cause autism) and now by the new hero to the movement.

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By Matt Carey

*Although it must be said that Mr. Blaxill never showed the courage to make his opinion public.

I (and many others) have recently reviewed Steve Silberman’s book, Neurotribes. Not taking any credit for this accomplishment–that’s all Steve’s. It’s on the New York Times best seller list. #8 in hard back nonfiction.

Congratulations Steve! Glad to see this effort recognized.

Here are a few reviews of the book–

Thinking Person’s Guide to Autism: How We Autistics Got to Here: Reviewing Steve Silberman’s NeuroTribes and also as NeuroTribes Is Finally Here: Celebrating With a Review, and a Giveaway

Here’s a review an interview on AutismShow.org 50: The forgotten history of autism: NeuroTribes with Steve Silberman

Emily Willingham with an interview and review at Forbes as ‘NeuroTribes’ Will Change What You Think About Autism And Here’s Why

And, yeah, you can find reviews at the New York Times, Atlantic and many other large media outlets too 🙂

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By Matt Carey