Funding for autism research/services.

[mgeary]

My younger son, Trevor, is 17 years old, and he is autistic. The actual diagnosis is "mild mental retardation with autistic features", but that's too much of a mouthful. ;-)

The band, Five for Fighting, is generously donating $0.49 to Autism Speaks for each time the following video is viewed. The funding goes toward research studies to help fund research and services. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.

This is a solicitation, of sorts. It won't cost you a dime, but you can help fund research into the causes/cure for autism, plus help pressure the insurance companies into funding services for families with autism. Autism is a family disease, because it affects the entire ohana.

Click here: Five for Fighting

http://www.whatkindofworlddoyouwant.com/.../id/408214

If you're interested, please watch the video. It's actually pretty good, the band must've put some thought into it.

Mahalo. My son, Trevor thanks you, too, but he doesn't speak. He's pretty darned good with a computer, though. ;-)

Rob, if this is inappropriate or doesn't fit within your guidelines, I certainly understand and will take it down.

Aloha! ;-)

[punafish]

My niece is autistic. I'll send this on to my sister. Thanks.

[Rob Tucker]

mgeary,

Always room for worthwhile causes.

Punaweb moderator

[mei]

Now this is a topic that I can offer some excellent feedback. I have a 14 year old son with asperger's and multiple co-morbid diagnoses. I also went to undergraduate school to learn about behavior and learning, specialized in learning and behavopr. Additionally, I worked 1:1 with children diagnosed with various disabilities as a skills trainer with The Intstitue for Family enrichment. I am a believer in the potential of all human beings and that their differences and 'labels' are just that. I have attended many trainings with some of the highest profile specialists in the topic. If anyone would like to correspond further with me on this subject, I'd love to share some of the knowledge I have gained as a mother, a teacher, a service provider, and an advocate.

[mgeary]

Thanks, mei, but did you view the video? Have you passed it along?

I'm not trying to be rude at all, but the purpose of this thread is to get people to watch the video to generate revenue for the cause.

If you'd like to discuss autism and asperger's elsewhere, I'd be glad to do that. It is a real, widespread, and growing concern, and increased awareness is always helpful. As I said above, it's an illness which affects the entire ohana.

Aloha! ;-)

[bystander]

I myself am autistic. I was diagnosed with Asperger's syndrome and that's no joke but I don't consider myself disabled and will argue with anyone who says it is a disablity. I especially detest those adds I used to see on TV from Autism Speaks. I'm in an online group that was intrumental in getting the adds pulled.

This is the statement from the group I belong to called Aspies for Freedom:

Aspies for Freedom began in June 2004. We have the view that aspergers and autism are not negative, and are not always a disability. This was a new concept to many people, but since we started the idea has spread further and now we are joined by many people who share the same positive view. It was called Aspies for freedom as the founders were all aspies, though the group is for anyone with autism, asperger's or any spectrum condition. We know that autism is not a disease, and we oppose any attempts to "cure" someone of an autism spectrum condition, or any attempts to make them 'normal' against their will. We are part of building the autism culture. We aim to strengthen autism rights, oppose all forms of discrimination against aspies and auties, and work to bring the community together both online and offline.

Read this blog too for some interesting insights into what Autism Speaks is really about

http://autisticbfh.blogspot.com/

[mgeary]

The older I get, the more I learn. The perspective of Auties for Freedom (I Googled up the website) simply never occurred to me. As the parent of an autistic son, I know a little about autism. I can't imagine what Trevor would have become had we not gotten the treatments, therapies, and special education for him that we did, and still do.

The little that I know about autism is that it is a spectrum disorder, with some people "high functioning" and some people "low functioning". My son functions fairly high, compared with some of the other kids that I know and have seen in his classes. Even so, he will most likely never be able to live as an independant adult, never be able to care for his basic bodily hygiene without assistance, and he will never be able to speak more than the few monosyllables that he does. I could be wrong, a miracle might occur in Trevor's life. It's also possible new therapies may come along which might help.

I'm all for supporting funding for research into the causes of autism, and for treatments and therapies which will help autistic people live their lives more independantly. The video by Five for Fighting is a simple fund-raising mechanism. In our society, money is the key to helping autistic people, IMHO. Simple as that.

We may agree to disagree, bystander. No offense intended.

Aloha! ;-)

[bystander]

mgeary, I'm sorry for interjecting such a disagreeable post. It's just that when I saw Autism Speaks mentioned, I felt I had to reply and expose their eugenic agenda. I'm afraid I revealed more about myself than I wanted by doing so. The only cure for autism I see is early dectection during pregnancy then abortion. Increased funding for autism research would only lead to better early dectection and more abortions. We auties and aspies are fighting for survival. Money is not the key in helping autistic people, a change in peoples attitudes is. Some stats I've read say that over 90% of autistic people are high functioning, have jobs and live independant lives. Trying to cure the 10% by eliminating all of us is like throwing the baby out with the bath water.

Never give up on Trevor. He may not even be mentally retarded and this could be just a conveniant label that has been applied to him. He could surprise you someday.

Autism is NOT a disease!

[mgeary]

I understand, bystander. As I said above, I've never heard of the point of view that you describe, nor had that thought ever occurred to me. Live and learn.

I understand, too, the point of view expressed by Auties for Freedom, at least on the front page of their website. I'm totally opposed to discrimination and prejudice of any type. If a person with autism or asperger's, perhaps like yourself, is fully capable of functioning independantly, I believe society should reach out to help in any way possible, if YOU want that kind of help. If you don't want any help at all, I'm all for leaving people like you have described alone and unmolested, and I'm all about ENDING DISCRIMINATION AGAINST PEOPLE WITH DISABILITIES.

It seems like you also understand the need for assistance for people like Trevor. There are many others I've seen who are even less capable than my son.

I don't know much about Autism Speaks as an organization, but I can't believe that their agenda is about eugenics. I believe that that is the way that Auties for Freedom perceive it, but there's likely more to the story than that. The point of the video from Five for Fighting, as I took it, was to get earlier treatment for the beautiful little girl, Claudia, in terms of speech and behavioral therapies. For a simple lack of funds and insurance coverage, she was placed on a two-year waiting period for services, at a critical developmental juncture in her young life. From what I know, the earlier that intervention, therapies, and treatments can be provided in a young autistic person's life, the more speech, social, and life skills can be developed.

I believe that's to the good, but as I said, I've never considered the point of view that perhaps an autistic person might not want to improve their speech, social, and life skills.

Mahalo for your thoughts, bystander, and a big ALOHA to you.

Aloha! ;-)