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Princeton families make $1.5M donation to Rutgers to study adult autism

2 Feb

NJ.com is reporting Princeton families make $1.5M donation to Rutgers to study adult autism. Two families donated $750,000 each, matched by another gift to the university to endow a chair in the psychology department:

Located at the Graduate School of Applied and Professional Psychology, the Karmazin and Lillard Chair in Adult Autism will pay for research and training future professionals to work in the growing field.

I find it very encouraging that the donors are parents of adolescent autistics.

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By Matt Carey

A Decade of Left Brain/Right Brain

1 Jan

2013 marks the 10 year mark for Left Brain/Right Brain. The blog actually started in June, as I recall, but June of 2003. The blog started out as a place for Kev Leitch to write about his life and his work. Most of his writing about his life was about events pertaining to his autistic child. I found the blog a few years later and it had already evolved significantly from its early days. It has evolved since then as well.

In a time when the online and public discussion was dominated by groups of parents willing to characterize autistics as “train wrecks” and “empty shells” who had “descended into the hell of autism”, Kev stood up to counter the message. Kev put together the autism hub to band together autistics and allies who were writing from a perspective of respect. Kev hosted an online forum and at one point this blog was home to about 10 writers, autistic and allies.

Kev has moved on to other ventures. I wish him well. He did a lot of good here.

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By Matt Carey

IACC conference call this week

21 Dec

Earlier this week the IACC met via conference call to finalize the Strategic Plan updates for 2012.  A 2-day workshop on the updates had to be cancelled due to hurricane Sandy.  Below are just a few fragments of discussions that occurred during the meeting.

Drafts of the updates can be found on the IACC’s website. And final versions will be posted as soon as they are completed.

The meeting started with a discussion of whether the IACC should issue a statement following the speculation that the shooter at Newtown Connecticut was autistic.  Such a statement has been prepared and will be released shortly.

One public comment noted the lack of support for a family trying to navigate the extra hurdles a family with disabilities faced following Sandy.  Some of the federal members noted that there are resources specifically focused on vulnerable populations. I am trying to get more specifics on that now.

Each question of the Plan was discussed and modified, sometimes with word smithing and sometimes with more extensive edits.  The question on treatments in particular had a great deal of discussion and edits were prepared real-time by OARC staff. There is a good team supporting IACC and it was impressive to see them continue to keep making notes on the discussion while preparing significant edits for approval during the call.

One question that came up during the discussions was that of immigrant populations and autism prevalence. There has been much discussion of the Somali-American community and autism and Idil Abdul spoke of the concerns of that community. Two studies had come out in then past year, one from Sweden and one from the Netherlands, suggesting higher autism prevalence for immigrant communities in those countries.  This highlights the fact that we don’t have autism prevalence data for most of the world.  To my knowledge there are a few from northern Africa, possibly none from sub-Saharan Africa and South America, little or none from south Asia.

The UK adult autism prevalence study was discussed and the fact that little is known about the adult population in the U.S..

Obviously much more was discussed in the whole day meeting.  Much of that can be found in the draft documents linked to above.

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By Matt Carey

Note: I serve as a public member to the IACC but my comments here and elsewhere are my own.

Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting

17 Dec

Slate has picked up Emily Willingham’s article on the Newtown shootings, as Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting. The URL says a lot:

http://www.slate.com/blogs/xx_factor/2012/12/17/asperger_s_and_newtown_school_shooting_autistic_does_not_mean_violent.html

Autistic does not mean violent.

It is very heartening to see large media outlets picking up on this message to counter speculation which started with the unconfirmed report that the shooter was autistic.

The article originally appeared as Autism, empathy, and violence: One of these things doesn’t belong here on Dr. Willingham’s blog EmilyWillinghamPhD.com and at the Thinking Person’s Guide to Autism.

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By Matt Carey

Autism Rights Group: Asperger’s Does Not Explain Newtown School Massacre

17 Dec

CBS New York has quotes Autism Rights Watch on the Newtown shootings. In Autism Rights Group: Asperger’s Does Not Explain Newtown School Massacre CBS cites the ARW press release. Including this paragraph:

“The search for answers should not be a search for a scapegoat. Autism is no excuse or explanation to evil. Being ‘autistic,’ ‘odd,’ ‘awkward,’ ‘camera shy,’ a ‘nerd’ and ‘uncomfortable with others’ does not cause a person to become a mass murderer,” the organization said in the release. “Autistic persons are more likely to be victims, rather than perpetrators of violence. Autism Rights Watch urges the public and the media outlets not to stigmatize the autistic persons and their families. They already are facing segregation and prejudices on a daily basis.”

The full press release can be found as ARW grieves for the families after Newtown, CT shooting

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By Matt Carey

AANE Statement on the tragedy in Newtown, CT

16 Dec

The Asperger’s Association of New England (AANE) has issued a statement: AANE Statement on the tragedy in Newtown, CT. The statement begins:

December 16, 2012 — At the Asperger’s Association of New England, we share the horror and sadness of people across the world. The shootings in Newtown, Connecticut, were a terrible and incomprehensible act of violence. We convey our deepest sympathy to the victims, their families and friends, and their community.

The AANE acknowledges the media speculation that the shooter had Asperger syndrome, including this statement:

Our overwhelming concern is for the families of the victims through their deep, enduring grief and devastation. We hope too that the conversation around Adam Lanza will be thoughtful and considerate of people who have Asperger syndrome or other forms of autism and their families

AANE is offering services of their staff:

Discussing this tragedy is challenging for families and very upsetting for children who have Asperger syndrome. Our staff is available to give advice or support relating to this issue during normal business hours: (617) 393-3824

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The full statement can be found at: AANE Statement on the tragedy in Newtown, CT

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By Matt Carey

My sympathies and apology to the good people of Newtown Connecticut

16 Dec

When I heard news of the murders in Newtown Connecticut I, like everyone, was shocked and saddened. Those are very weak words for the emotions I felt. I can offer sympathy, condolences and some understanding of what the good people of Newtown feel, but I can only imagine their grief at this time.

The autism communities rarely speak with one voice but this time there has been a unity of support and sympathy from all corners.

There has been a second message as well.  Not for the people of Newtown, but for the press reporting on this story. A message to treat autistics with fairness and accuracy. That whether the shooter was autistic or not, to keep in mind that autism is not the same as violent. That this young man in no way represents autism any more than he represents your community.

For intruding on your grief to interject that message, I apologize. I believe the individuals and groups who have stepped forward with these messages have done so with respect and only done so this early because of the need to head off a damaging theme we have seen emerge in the past from other shootings.

I have tried to highlight those messages here on this site. I have strived to do so with as much respect as I possible.

I wish you well in the time ahead and hope our support outweighs our intrusion.

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By Matt Carey

ARI Autistic Global Initiative Committee’s Statement on the Newtown, CT Tragedy

16 Dec

The Autism Research Institute’s Autistic Global Initiative Committee has issued a statement on the Newtown Connecticut shootings:

ARI Autistic Global Initiative Committee’s Statement on the Newtown, CT Tragedy

The statement begins:

“Our thoughts and prayers are with the community of Newtown, Connecticut today in the wake of yesterday’s tragedy. Some public comments have drawn potentially inaccurate and stigmatizing conclusions about a link between the diagnosis and a propensity for violence and lack of empathy

The statement goes on, including ” As adults with autism living productive, peaceful lives, we urge the media and professionals who participate in speculative interviews about the motives of the accused shooter to refrain from misleading comments about autism and other neurodevelopmental disabilities”

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By Matt Carey

GRASP: Statement from Michael John Carley on the Newtown, CT Shootings

16 Dec

Michael John Carley of GRASP, the Global Regional Asperger Syndrome Partnership, has issued a statement on the Newtown Connecticut shootings: Statement from Michael John Carley on the Newtown, CT Shootings. He begins:

We here at GRASP (and I as the father of two school-age boys), cannot be more saddened and devastated by the news of the shootings in Newtown, CT. Our thoughts, wishes, prayers, and heaviest hearts go out to the victims and their families

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And urges all to “…please steer away from getting too caught up in the spectrum angle. Let us focus instead on mourning; lamenting through grief that such a terrible and tragic event befell us all on this awful, awful day.”

The full statement is at Statement from Michael John Carley on the Newtown, CT Shootings.

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By Matt Carey

Emily Willingham: Autism, empathy, and violence: One of these things doesn’t belong here

16 Dec

Parent, editor of the Thinking Person’s Guide to Autism, biologist and science writer has written about the Newtown  Connecticut, Sandy Hook Elementary shooting in
Autism, empathy, and violence: One of these things doesn’t belong here

Some news coverage in the last 24 hours has mentioned autism in the context of the tragedy in Connecticut, particularly referencing Aspergers or “high-functioning” autism. Talking heads have brought up the “empathy” factor when discussing autism, and I’d like to set some of the record on that straight.

She does a great job “setting the record straight”. The rest of the article is available at: Autism, empathy, and violence: One of these things doesn’t belong here

The autism communities–autistics, parents and more– are shocked and offer sympathy and empathy to the communities involved in the shooting.
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By Matt Carey

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