Left Brain Right Brain

Tom Insel has been the director of the U.S. National Institute of Mental Health for 13 years. He chaired three incarnations of the Interagency Autism Coordinating Committee (IACC), taking that chair shortly after the first IACC was seated.

He will be joining Alphabet (Google) in the Google Life Sciences team.

As chair of the IACC, Insel has shown that he kept a very close watch on autism research and an interest in the autism community. More than one could normally expect from the chair. And this isn’t just my observation. I’ve had others who watch the IACC and NIH closely tell me this.

I wish him well in his next effort.

Here is Tom Insel’s statement from the NIH website:

Dr. Tom Insel to Step Down as NIMH Director

After 13 years as NIMH Director, I have decided to move on. I will be leaving NIMH at the beginning of November. These years serving as director have been inspiring, at times challenging, and ultimately gratifying beyond anything I might have imagined when I arrived in 2002. I was fortunate to serve under two visionary NIH directors, Elias Zerhouni and Francis Collins, and to work with extraordinary Institute and Center Directors. I will be leaving a team of gifted and dedicated colleagues within NIMH. The NIMH has accomplished so much during this past decade — progress in neuroscience, progress in diagnostics and therapeutics, and, most of all, progress toward a focus on the needs of people with serious mental illness. To be able to work on such important problems with such talented people has been the high point of my professional career.

Why am I leaving? I had always planned to depart after 10 years. I stayed longer because of the fun of first launching a new Institute, the National Center for Advancing Translational Sciences (NCATS), and then the BRAIN Initiative, as well as my passion for what we have been doing at NIMH. I am not leaving because of a problem or crisis. Indeed, I chose this moment because I wanted to leave at a high point: for the first time in many years we have a complete and completely outstanding leadership team at NIMH, we have excellent engagement from the advocacy community, we have unprecedented support from Congress, and we have an inspiring strategic plan. I want to step away at the best of times with all signs pointing to a bright future.

In terms of my own future, I am certainly not planning to retire. I am currently working out the final details for a move to the life sciences team at Google (or rather, Alphabet, now!). The Google Life Sciences (GLS) team is developing new technologies to transform healthcare, such as a contact lens with an embedded glucose monitor. The GLS mission is about creating technology that can help with earlier detection, better prevention, and more effective management of serious health conditions. I am joining the team to explore how this mission can be applied to mental illness. That the life sciences team at Google would establish a major exploration into mental health is by itself a significant statement — recognizing the burden of illness from psychosis, mood disorders, and autism as well as the opportunity for technology to make a major impact to change the world for the millions affected. The Google philosophy has been to seek a 10x impact on hard problems. I am looking forward to a 10x challenge in mental health.

A national search for a new NIMH Director will be launched, but in the meanwhile Dr. Collins has issued an official statement appointing Dr. Bruce Cuthbert as Acting Director. Bruce has held a number of leadership positions at NIMH, including leading our RDoC initiative as well as the NIMH Division of Adult Translational Research. He is an internationally recognized researcher. I greatly appreciate his willingness to lead the Institute during this transition period. I know with Bruce at the helm and the leadership team in place at NIMH, I leave the Institute in strong, capable hands.

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By Matt Carey

Newsweek has an article up at Newsweek about the recent vaccine study–the one discussed in the press release here. The title of the article pulls no punches: Anti-Vaxxers Accidentally Fund a Study Showing No Link Between Autism and Vaccines

Here’s how it starts:

Most experts today agree that the belief that childhood vaccines cause autism is based on bunk science. Even still, some advocacy groups claim immunizations are responsible for raising the risk for this neurodevelopmental condition, despite a growing body of research that shows there isn’t a link. (The study that most anti-vaccination groups point to was retracted after it was found to be based on falsified data.)

If the title didn’t tip you off that there would be no false balance here, this first paragraph is very clear.

Here’s the second paragraph, where they discuss how SafeMinds, called an organization in the anti-vaccine movement:

Despite the science, organizations involved in the anti-vaccine movement still hope to find some evidence that vaccines threaten children’s health. For example, the autism advocacy organization SafeMinds recently funded research it hoped would prove vaccines cause autism in children. But this effort appears to have backfired for the organization—whose mission is to raise awareness about how certain environmental exposures may be linked to autism—since the study SafeMinds supported showed a link between autism and vaccines does not exist.

SafeMinds, even though they funded the study and were kept aware of the progress, even though they knew the methods and approved of them, wants to do their own analysis.

But Sallie Bernard, president of SafeMinds, says she would at least like to see a re-analysis of the newest data. “We feel that embedded within these data sets there are animals that have potentially an adverse reaction to this vaccine schedule that would mirror what happens in human infants,” she says. “The majority who get vaccines are fine, but we believe there is a subset that have an adverse reaction to their vaccines. By looking at the raw data, not data in aggregate, we may be able to identify the subgroup that had that reaction.”

And who at SafeMinds would be better qualified than the authors to do this analysis? (who would even be remotely qualified?)

No one.

Has SafeMinds shown excellence in research methods and integrity in the past?

No.

Does anyone doubt that SafeMinds would torture the data to the point of getting the answer they want?

Integrity would be accepting the results of the study they sponsored. SafeMinds lacks that integrity.

—
Matt Carey

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.

—
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.”

—
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