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Autism Speaks... Good Or Bad?
A MyAutismTeam Member asked a question 💭
posted July 27, 2012
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A MyAutismTeam Member

Autism Speaks has worked to improve its image, but most HFA adults are hostile to them. They do NOT want to include autistics in decision-making, they were founded by people hostile to their own autistic children, and they are over-focused on cures even though research shows the genetic patterns that bring about autism are the same genetics that bring about intelligence and creativity in all people. They also are constantly talking about "Oh, my poor child, what a terrible burden on me." It comes across as a giant pity party.

What finally totally turned me off of them completely was watching a video of one of the founders, in front of her autistic child, talking to the camera about contemplating suicide/homicide by driving off a bridge with the child in the car, but only stopping because she had to live for her other, non-autistic child. The autistic kid was standing near her, rocking, and at the end muttered "I love you, mommy." She was ignored. I felt sick.

this is not the original I saw (I saw it unedited... yes, it is terrible)

http://www.youtube.com/watch?v=C7NTfZzS9b8

Comments by Autism Self-Advocacy Network founder Ari Ne'eman:

http://www.youtube.com/watch?v=Qbwcjlp-Fjo

posted July 28, 2012
A MyAutismTeam Member

It's so/so; I'm sick of all this money being poured into research with nothing to show for it in terms of real life applications for families dealing with children/adult children on the spectrum, ie: SERVICES!! Has anyone else noticed that EVERYTHING is being promoted as something the PARENTS/CAREGIVER has to do at home, on their own? REALLY?? No one asks the neurotypical community to educate and treat their children by themself at home. No one expects neurotypical parents to homeschool their neurotypical kids. Why are WE being put in the possition of treating our own children on our own?? Where are the SERVICES???? Autism Speaks has the platform to advocate for PARENTS of autistic people, not just ask for money for research and to keep their "charity" going. If "Autism Speaks" for me, then speak up for the parents and provide us with REAL RESOURSES in public schools and facilities where our children (INCLUDING ADULT CHILDREN) can GO to get treatment!!!!!

posted July 27, 2012
A MyAutismTeam Member

@A MyAutismTeam Member, I understand. But the exercise of compassion, just as should be the exercise of all other things, is local. Look to your girl first before trying to change the world. If you don't like what you see, vote with your feet. I realize that my advice on sex is not for everyone. As I said before, the advice is meant for only 16 and up, for autistics operating on the upper half of high functioning or better. Its how I would have wanted to be treated by my parents in an ideal world... maybe centuries in advance of what is realistic these days. Something else to consider: I've always had an much easier time relating to women, and to either gender from East Indian or Asian cultures. Basically, I make the fewest friends with white American alpha males, and these are also the people who had seemed to do the most damage to me in my life careerwise. Autism can be far more accepted is non-Western cultures simply because their is far more tolerance by everyone toward everyone regardless of their foibles. But that's my take. Maybe you should enter Peace Corps together with your daughter... a complete education in its own right.

posted August 2, 2012 (edited)
A MyAutismTeam Member

I'm tired of being told I have a disease or that I can be cured. THERE IS NOTHING WRONG WITH ME. Back off.

posted July 31, 2012
A MyAutismTeam Member

I do not believe asd is a mentall illness. I believe it is a different operating system. That said, mental illness can definitely be conorbid with any type of neurology, not just asd. Your daughter's doctors need to look into her other issues and work with her. If the dr isn't listening, change docs.

posted August 1, 2012

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