Some do think in terms of a cure. Only education can change their minds.
In America, the magic pill is the answer to most things, and few understand the problem with that.
Autism Speaks has said things that call for the eradication of Autism through genetic testing and abortion. The same method used to abort Downes Syndrome, but Autism is not clearly genetic, and any marker would likely be carried by 10% of the population.
The Vaccine issue has also been brought up, which lead to studies that proved no link.
Behavior Modification has also lead to exposing the Judge Roddenburg Center, which brings up methods used to control people in institutions, bad things are happening, and are being exposed.
They are a fund raising machine, with a cause, not a Scientific Organization. They have made tens of millions in donations, and have no say on how the money is spent, for that is peer based research.
The studies paid for by Autism Speaks have improved treatment of head injuries, expanded knowledge of the brain, and done nothing to harm or help the autistic.
My complaint would be the percentage of funds raised spent on fund raising, half, but other charities spend as much as 90%. It is still directing money to generally needed research.
Head injuries from automobiles and war have been the main benefaciaries of Autism Speaks.
They express the NT world view of Autism, their misunderstandings are brought out and refruted.
Many parents of autistic children go there for support, emotional support, they can speak about how it has made a mess of their life and family. They need support, as we all do, where ever we are. They would not get that at Wrong Planet.
Autism Speaks is in the dark on Autism. At best they are saying, "Something should be done." That leads to "Do something, even if it is wrong." Their grasping at straws has lead to clearing out the straws. The Dark Ages of Autism are being cleared away.
Metals, Vaccines, Genetic Flaws, are being ruled out. Autism is not a Mental Illness, no drugs or treatment have shown any promise.
Discovering what something is not, what does not work, is Science. Everything they have proposed, they have funded research that showed they were wrong.
Autism Speaks is known for having no autistic people involved. They saw it as an evil disease to be cured or eradicated. I have heard people here say they were banned from the discussion board there, for saying, "I am Autistic."
Their publications have been to make Autism seem the worst of the world's problems. Their focus was on a childhood disease, and they denied that any grew up, lived lives. The Autistic were horrible children who would be locked away for life, a hopeless burden.
Studies of adult outcomes, Alex Plank et al, show that is not the case. We may be a strange lot, may not really ever fit in, but we do get by.
I see that Autism Speaks has run out of answers, and that many on their site, who also visit Wrong Planet, see for themselves who we become, are looking for the best outcome for their child possible.
They have tried Doctors, Autism Speaks, they have read, studied, and come here to observe. Many are lurkers, some post. They are good parents who are trying to understand.
Autism in childhood is like the terrible twos lasting for a decade. That is hard on parents. Worse, the child then becomes a teenager. That is hard on all parents.
What is shown here is with some extra care the children can become educated, and even do well at a university. Many work, and find independant adult lives that constantly fall apart just like everyone else. Everyone loses jobs, gets divorced, has problems with life, we are perhaps extra normal, but still within range.
In the degrees of Autism, Dr. Temple Grandin is HFA, hence less likely than Asperger's Syndrome folks to make something of themselves. A Doctorate, many books published, a leader in her field of Animal Science, a speaker of note, show that HFA is not a hopeless situation.
It was groundbreaking when she first wrote, the world professional view was Autism is hopeless.
It is also groundbreaking to link to Autism Speaks, that place that used to exclude autistics, and is now coming around to the view of living with autism.
Dr. Temple Grandin is still changing the way the world views autism.
Autism Speaks is changing, now accepting adult outcomes can be expected to work out sometimes, all is not hopeless.
I place less value on organizations, and more on parents. We should do all we can to help them raise someone like ourselves, for we do complain a lot about our own lives. We are expert complainers.
What Dr. Grandin has done is redirect Autism Speaks to the mainstream parent view, of, the only future I care about is for my child.
Autism Speaks could play a very useful role if they changed from extirminating us to educating us. They would better serve their core group by funding the educational research that has been shown to work.
Changing to what works, which is an offshoot of studies they funded, leads to better education and hence better adult outcomes.
Just a few years ago I do not think Autism Speaks would have allowed a link from an Autistic person.
This is a major change, they are coming to the view that the, NT only solution, will not work, and only by joining forces with the autistic can a program to minimalize the problems of the autistic and their families, schools, and adult lives be developed.
That has been the mainstream point of view on Wrong Planet. We are getting what we asked for, direct the major fund raising machine to making our current lives better, not to some impossible dream of change.
Dr. Temple Grandin lead this change, just as she has lead for over twenty years.
The politics of organizations is falling before the reality of about 3,000,000 Americans are Autistic.
They cost parents, healtcare providers, schools, governments, and are not productive workers.
Costs can be lower, people can become more productive, and the quality of life can improve.
Dr. Temple Grandin has a Doctorate in Animal Science, we are a bunch of apes,
I support her views on ape managment.
15 Apr 2009, 9:53 pm
