Monday, February 4, 2013

Gadfly on NPR!

My interview with NPR science reporter Jon Hamilton aired today  after a six month wait.  The list of media exposure and mentions continues to grow for me and that's gratifying.  Apparently, for some strange reason, it didn't air on KCRW, the local NPR station in Los Angeles. At least as of 8:55, so I just gave up and listened to it online.  It did air in some other parts of the country and I've already received a few emails about it and comments on my facebook page.  I discussed my decision to will my brain to Autism Speaks autism tissue program and my desire for my brain to be used to elucidate on the etiology of autism and perhaps even help find a cure.

Of course, I'm hoping I have at least another twenty-three years of  life (to age eighty or older) and I'm not sure how useful the postmortem brain of someone with advanced age would be.  As Hamilton said in the piece, researchers are more interested in obtaining postmortem brains of very young children (perhaps aged 3 or less) because the brain continues to develop up until adulthood.  Therefore, the key to understanding the neurophysiology of autism spectrum disorders is to find out what happened at the earliest stage of life possible, since  the evidence (at least from what I understand) indicates that autism is a prenatal condition and whatever happens, i.e. abnormal migration of neurons, etc., happens in utero, so the best postmortem brains come from the youngest children possible.  These samples are in short supply as obviously there is a dearth of brains from deceased 3 year olds with autism.  There are young autistic children who die in accidental drownings or get run over in traffic accidents because they are too impaired to understand danger, and I guess young autistic brains are obtained in this fashion, as unfortunate as these events are.  (No, I'm not saying I'm happy about small autistic children dying so we can have more postmortem brain tissue).  I realize my friend, Jake Crosby (and others who believe that vaccines cause autism) will dispute this.  For that reason, even if I were to drop dead the day after tomorrow at the age of fifty-seven, my brain might not be terribly useful in contributing to any sort of scientific understanding. 

One issue that the piece did not mention was my disillusionment with autism speaks and my having second thoughts about my decision to donate my brain to them.  It was several years ago that I met a representative from autism speaks' tissue program at an autism conference and filled out the paperwork for donating my brain.  Since then Autism Speaks has done a variety of things that I don't like.  I've written about these issues elsewhere in case anyone is interested.

I may just go ahead and donate my brain to Autism speaks tissue program in spite of these things.  Of course, I'm not sure what I've done with the paperwork as I recently moved and my problems have made me rather disorganized.

I also wonder  if there is an amount of time that an autistic brain can be removed from the head and put in formalin or a freezer for it to be useful in research.  My sister, Melanie, will most likely outlive me and I guess I'll have to discuss with her the mechanics of getting my brain to the scientists.  She lives in Oregon, about a thousand miles away from me so the logistics of getting my brain someplace where it could be useful for scientific research may not be feasible.  I guess I may discuss this with Melanie the next time I see her.

In the meantime, I hope that someday science will advance to the point where we'll have something that will help or even cure autistic people of their disability.  

5 comments:

Roger Kulp said...

Glad to finally hear it,and you.I loved to hear this guy say autism is as bad,or worse than polio.Dr.Rossignol and I had a fun little chat about how neurodiversity hurts autistics when I saw him.Serious researchers and doctors don't buy into that crap.

Before I got my diagnosis,I joined the Autism Speaks tissue donation program.I guess this is the program you joined?The next time I get to talk to Dr.Rossingnol,I want to talk to him about starting a genome for Cerebral Folate Deficiency Syndrome,this should be easy,because all the cases in the world are only seen by three doctors.

Roger Kulp said...

What you say about autism and age is very true.No one cares.The fact that the focus has been on young children,has been both a travesty and and an injustice.We need to care just as much for autistics of all ages.

I hate to think where I would be,if I had not worked my ass of the last few years to get to see the doctors and workups that I have,starting with getting myself reevaluated for autism in 2008.Not to mention being lucky enough to find every last biomarker. Otherwise no one would care about me,and I might well have been homeless after my mother died.

Getting a new autism evaluation alone was hard enough.My original diagnosis was in a school setting,and the records were destroyed when I left high school.
All self advocacy,of a type that ASAN never dreamed of.

You probably have not seen these two talks up on YouTube about autism and old age,both are from the Autism Europe 2010 conference.I past the links to part one of each.

This is from Michael Baron of the UK National Autism Society

https://www.youtube.com/watch?v=h9sGuzWwOk0

This is from Patricia Howlin
Professor of Clinical Psychology, Saint George Hospital,University of London

https://www.youtube.com/watch?v=iG89fft6-HA

Samaritan said...

This is how "Thautcast.com" website manipulated the headline. A common practice to generate facebook likes. Along with an apparent attempt to diminish your contribution as an autistic person because you recognize your own problems and seek to help others.

"NPR: If Only All These Worthless Autistic People Would Die So We Can Have Their Priceless Brains..."

Is it any wonder that so many people are viewing the neurodiversity movement as oblivious to the needs of people across the spectrum.

The research identified in the NPR article and interview is responsible for the understanding that the development of the brain of children with autism can be much different than other children and specifically what those differences can be.

It would have been impossible to achieve this understanding without the invaluable brain tissue samples provided by caring individuals with Autism and caring parents and loved ones of people with autism.

What a callous expression of humanity by the person that wrote that comment defaming NPR and all the dedicated and caring people that are part of this research.

jonathan said...

Yes, I've seen Landon Bryce's blog and his posting about me. He's someone with no credibility who has no understanding of the problems of people like me and certainly not those more severely on the spectrum

Socrates said...

I thought the "Autcast's" quotes from you from the show made you seem very real and very human and quite funny.

You're wondering about reaching 80? I'm wondering if I'm going to make it through the next year.