Neurotribes--the history and myths of autism

[Anonymous]

I really enjoyed listening to this interview with science writer Steve Silberman on Fresh Air the other day and thought others would too:

http://www.npr.org/sections/health-shots/2015/09/02/436742377/neurotribes-examines-the-history-and-myths-of-the-autism-spectrum

[Anonymous]

Interesting historical perspective but I disagree with this statement

"....Silberman says that while much of today's autism research focuses on finding a cause for the condition, society might be better served if some of the research funds were directed instead toward helping people live with autism...."

While I agree in part with what he said here, I disagree with the thought that we need to stop focusing on the cause. If we find the cause, we won't have to worry about trying to figure out HOW to live with Autism.

[Anonymous]

He's probably talking about things like that App they have for Google glass that can "read" facial expressions so you can figure out if you're pissing your boss off, if that person sitting on the bench at the park actually wants to talk to strangers, etc. Would be more for us HFA who are walking around in society, surely. But if you believe that the strengths you get as a HFA are worth it, then the key would be to learn to compensate for the weaknesses, rather than deciding we don't need any more HFA people in the world.

[Anonymous]

Thanks for the link! Reading the book right now and 17% through it. The book is awesome. Our son has been called "classic Asperger's" by his developmental ped and also has ADHD, combined type, so I've read a lot of books and this book, the parts I've read so far explains the history of the autism spectrum very well.

A must read.

I agree that society is "better served... with research funds directed instead toward helping people live with autism..." At least in my family, we know where DS "gets it" - As my BIL saids, "Just look at our family". It's in our genes.

The premise of the book is that autism is not something that needs to be "cured" but that autism is a normal part of being human, part of our neurodiversity and should be accepted as such.

[Anonymous]

My BIL actually said, "Just look at our family, the kid is doomed."

LOL! Everyone at the table thought that was hilarious. Telling about our family....

[Anonymous]

Anonymous wrote:Interesting historical perspective but I disagree with this statement

"....Silberman says that while much of today's autism research focuses on finding a cause for the condition, society might be better served if some of the research funds were directed instead toward helping people live with autism...."

While I agree in part with what he said here, I disagree with the thought that we need to stop focusing on the cause. If we find the cause, we won't have to worry about trying to figure out HOW to live with Autism.

He didn't say stop focusing on the cause, but the truth is that there are many adults out there on the spectrum who struggle finding employment, housing, even with daily living skills. I think it is important to balance the priorities.

Even if we can identify all the causes and genes, doesn't mean we could prevent it entirely.

[Anonymous]

I just finished the book, and recommend it. It's basically a history of how society and medicine have thought about autism for the past 200 years or so. The later chapters were familiar ground for me (the vaccine wars, the Autism Speaks wars, etc.) but I learned a lot in the first half that I haven't seen anywhere else. The best investigative journalism in there is Silberman's discovery that Leo Kanner almost certainly did not independently "discover" and name autism simultaneously with Hans Asperger. It turns out that Asperger's chief diagnostician and head nurse fled the Nazis, got married, and ended up working ... you guessed it, in Kanner's clinic in Baltimore. Kanner does not come out looking good. Asperger is kind of the hero of the book. The account of Henry Cavendish's life is very compelling too. Maybe it can bring an end to the debates about whether folks like Einstein or Jefferson were on the spectrum. It seems pretty hard to argue about Cavendish! And there are a lot of good stories in there about autistic kids, even so-called "low functioning" ones, growing up to lead happy and meaningful lives--at least if they could avoid being institutionalized, which was clearly a great tragedy for many.

And yes, Silberman has a very humane view of the spectrum and clearly thinks we should spend more time and money helping autistic people thrive, and less time hunting around for more and more genetic markers. Of course science should march on doing what it does, but it seems very unlikely at this point that the search for the causes of autism will produce any answers that will be much help to actual autistic people. At least not any time soon. And a genetic test that would ensure that they are never born (as is happening with Down's) could be a real tragedy. On the other hand, investments in better educational and work environments, communication devices, and family support could do a world of good. So we just need a shift in priorities.

[Anonymous]

Thinking about this conversation today. Our son is 20, and when he was a toddler there was no such thing as sensory friendly clothing with screen-printed tags, instead of the sewn-in kind. Just these little kinds of improvements are making life so much easier, and I wish they had existed when my kids were little. E-commerce was just starting to be a thing, so even finding this stuff online and ordering it was trickier than it is today. I'm excited about improvements like these new clothes that can 'hug' the wearer when s/he is stressed, etc. I think this is what is meant by living with the condition.