Saturday, April 18, 2009

Autism Awareness and Severely Autistic Adults

April is Autism Awareness Month in the US.

Here, in Canada October is officially Autism Awareness Month but living next door to the US media giant many Canadians receive more media coverage during April than October. Given the state funded CBC's obsession in the past few years with promoting the Neurodiversity, "WE don't want a cure", ideology of some persons with HFA and Aspergers Disorder that is not necessarily a bad thing.

But whether the coverage arises from Canada, the US or the UK, it is very difficult to find news or features about persons on the severely autistic end of "the spectrum", those whose diagnoses are not in doubt, and who are doomed to lives of dependency, some in high security community residences and some in full scale institutional care. Contrary to some of the loopy rhetoric out there severely autistic persons do not reside in institutional care and then become autistic. They are there because their autistic deficits are so severe that they can not live safely in the community. There are some autistic adults who require institutional care for their own safety, security and well being.

If I missed a recent news article discussing the plight of the severely autistic, particularly severely autistic adults, amongst the thousands of Autism Awareness Month features, please feel free to forward to me a link.

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Roger Kulp said...

The sad part of it is,that with most of the focus on children,and especially very young children,we will never know just how many seriously autistic adults there are,which just gives more credibility to those who go around talking about an autism epidemic.

A very large per centage of autistics,who are over the age of twenty five or so,have never been properly diagnosed.Like me,they were labeled as having a mix of schizophrenia,social anxiety disorder,assorted psychoses,and learning disabilities.It was not really until the DSM-III came out in the late 1980s,that most autistics,like me, could be properly diagnosed.My own diagnosis is atypical autism,meaning I have features of everything from Asperger's,to the most severe forms of autism,and I move back and forth across the spectrum.At my last evaluation,in 2008,it was suggested I go into an institution.This variance of degrees,seems somewhat common in autism associated with mitochondrial disease.

I once read this article,which I can no longer find online,about this woman,who was newly diagnosed with autism,in her 80s.She had been in an institutution,since the early 1950s,for some other nonspecific diagnosis,but had never been properly diagnosed.

This seems to be very common,in supposedly advanced countries,like the US,Canada,the EU,etc. . This isn't even touching places like Africa,where autism is only now being learned about.

Stories like this are common,and most of the blame,for this,is the fault of the lies spread about autism,by one Dr.Bruno Bettelheim,whose teachings became the main orthodoxy about autism,in the thirty five years or so after WWII.

While "Dr.B" was busy being a media darling,real lives were being destroyed by his teachings.A few years ago,PBS did an excellent documentary about this,that needs to be seen by anybody even remotely interested in autism.It can be seen here:

I have only recently learned,that in the last nine or ten years,ABA has been successfully used in autistic adults,but its use is so limited,that most adults will never benefit from it.You will never hear a peep out of the neurodiversity crowd.about advocating ABA in adults,because they are so bent on keeping autistics just the way they are.

farmwifetwo said...

I jumped off my fence....

Monday that "jump" is being printed/bound and sent to the Fed gov't - all 4 parties.

I'm not advocating anything except equal treatment under the law when it comes to funding. From Floortime, to ABA, to speech, to OT... whatever your family wishes or whatever mine wishes.

28pgs... and the story... is barely started... but I had to quit somewhere... All I did was write it as if you were explaining what was out there (internet, books, services, funding etc) to a new family with autism. Q is?? Do I have enough nerve to send it to a publisher and make it longer??

Answer... not today. I'm still wondering if I was crazy to write it in the first place. It was Estee's Autism is a culture that gave me a shove off the fence, Bill C-360 that made me type faster, and the lastest PSA (autism is a difference not a disability) out there... that made up my mind that I had to atleast have my say.

If you don't speak up.. sooner or later you have to stop complaining about it.


Stephanie said...

I have severe autism but a high IQ, so if I *ever* get treatment I may actually have a shot a living a good, happy life (in a supervised apartment because I could never live alone).

But, I could also very well end up in an institution because my autism can be quite severe at times. I spent my youth in institutions so it won't surprise me if I have to go back as an adult at some point.