Thursday, July 14, 2011

yes, let's find a cure

There has been some buzz in the autism blogosphere recently about that dirtiest of four letter words, cu**. (No, I'm not talking about a certain part of the female anatomy). Blogger Harold Doherty has recently written about his desire for a cure. Teenage anti-neurodiversity blogger, Oliver Canby, has stated that autism sucks and how much he wants a cure.

I will write a third post about this, because I suffer everyday from the isolation of autism, the not being able to make a living and the inability to get things done during the day. The fine motor coordination problems that impair my handwriting as well as the irrational fear of birds. I had to attend special education schools for 8 years, as well as an after school tutoring program for a few years. I had to spend recess time at one school to receive tutoring for my handwriting. I was also a chronic bedwetter up until age 13. However, compared to some persons on the spectrum, I have it really good. There are others who engage in self-injurious behaviors, who cannot speak a word, can't dress themselves or take the bus anywhere and will require 24/7 care for the rest of their lives if no way is found to cure them.

I hope that we can get a consensus of pro-cure people in the blogosphere to write posts how much they want a cure for this horrific disability and have more than three.

In terms of finding a cure, we have a formidable uphill battle in that there are limited numbers of autistic brains available for autopsy, no good animal models for autism as well as the fact that autism is a description of many disorders with apparently a combination of genetic and environmental causes, all which make finding a cure or really advanced treatments a difficult task.

In addition to these obvious disadvantages, we also have the public sector and private sector autism organizations who don't give a shit.
Congress created the combating autism act, which had as its goal the curation of autism. It stipulated that at least one person on the autism spectrum must be appointed to the interagency autism coordinating committee, the government body that makes decisions as to how autism research can be best funded. To date, the two autistic members, Stephen Shore and Ari Ne'eman are opposed to curing autism. They are barely affected by their autism if at all. So far not a single pro-cure autistic person has ever been appointed a public member of the IACC.

The government continues to fund rogue, Morton Gernsbacher, who claims that autism is a harmless condition and that severely autistic persons have made great contributions to the arts and sciences.

John Elder Robin Hood-in-reverse also makes funding decisions at taxpayer expense, in spite of saying there is no need for a cure for autism on page five of his book, Look Me In The Eye.

Autism speaks, one of the largest private funding bodies for autism research, has funded Laurent Mottron who states that autism is not a disorder but merely a difference. They also have John Elder Robison on their scientific advisory board. Not only is Robison the only member of that board without an M.D. or Ph.D. degree, he is also the only one who has not graduated high school.

All of these things make the ultimate finding of a cure for autism a more difficult problem than it might be otherwise.

Though I don't expect a cure to be found in my lifetime, I hope that in spite of these things that someday a cure will be found.

3 comments:

Anonymous said...

Yes, we need to find a cure for ASD's, Non-Verbal Learning Disability, ADHD, learning disabilities, language disorders and other conditions. There's nothing "cool" about having a disability.

It sucks having to put in extra effort for me to live my life. Unlike many aspies who have it way easier than I do when it comes to academics, socializing, and managing time to get things accomplished (executive dysfunction), I take longer to communicate myself verbally and receptively when it comes to synchronizing in a conversation. My former speech therapist and many other therapists rely on "implanting a chip" for me and others with language disorders that's meant for us to stay in "script-mode" just so we come across as being socially-acceptable, nothing more! Nothing that allows us to be socially dynamic!

Thank god my new therapist realizes this and uses different methods so I can finally live through life easier! I no longer feel like I'm being manipulated. If only there were a cure for all deficits and defects, we could live our lives to our fullest potential.

Oliver M Canby said...

Thanks for the plug Jonathan!

jonathan said...

You're welcome, Oliver.