Opinions About "Autism Speaks"

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I heard that "Autism Speaks" was the biggest organization relating to autism. However, when I browsed their site, I did not see any articles from people on the autistic spectrum. When I tried to find their associated blog, I saw no posts more recent than 2012, and again nothing from people on the spectrum. Finally, when I looked through their "contacts" page, I saw no way other than telephoning (which I hate) to contact them, and no contact point for people on the spectrum.

I am new to the autism community, diagnosed in May, 2016. However, it seemed very odd to me that an organization purporting to be "autism speaking" had no autistics contributing to it. Does anyone know either: (a) why this is; or (b) how to contact the organization by email?

Thanks!

By implication, to put it simply, they don't believe that autistic people can "speak for themselves." That they are viable human beings, in essence.

That is the crux of the disdain for which many in WrongPlanet hold fo "Autism Speaks."

You're kidding me?

If that were true, it would be mega-scary.

The key here, is "by implication." There could be some in the organization who find autistic people could be fine advocates for themselves.

The overall ideology, though, is to see autism solely as something negative.

If Autism Speaks doesn't don't publish accounts of autism written by autistics, how can there be credibility in such an organization?

It's like not publishing accounts written by black people in the magazine of the NAACP.

So, what are the largest organizations supporting people on the spectrum, which include the voices of people on the spectrum?

Welp...my two cents worth..

A$ is an organization geared towards parents with autistic children. It's fund raising is geared towards find *a cure* for autism, early diagnosis for children, effective treatments for children, and support for families with children.

It's child centered, and if I have read anything that wasn't about children's needs it was about people with autism functioning at a very low level.

Your issues aren't even on their radar screen.

And no they don't care.

If A$ cared that stupid puzzle piece logo would be gone, and would quit shilling to moms and dads that autism is the death sentence of the life you once knew.

Until A$ has a come to Jesus moment and fess up they are only interested in providing help to children, parents and supporting low functioning adults, they will not get a dime from me.

There are diseases and disorders that have this paternalistic view point, but the people benefiting are usually minors, and will die before they become adults. Or the people are so developmentally disabled it doesn't matter (in general).

Autism spans from the guy who will never be able to be left alone for two hours to the person a with college degrees. A $ ignores the level 1 adults. They aren't cute. They can more or less fend for themselves, however badly they do it. And those adults aren't worth of any type of support.

If A $ would be honest for what they stand for, I wouldn't have a problem with a child centered foundation.

Autism Speaks, in essence, should allow "autism to speak" And who better to provide the "voice of autism' than people with autism?

I see your point about it being a child/parent-centered organization concentrating on people who are "low-functioning."

Like you stated, in essence, maybe they should change their name?

URKiddingMe, you may find grasp.org more useful. They aren't great, but it has many older aspies in its ranks with good life skills.

Not many on a level that Autism Speaks is at.

This is your reality...

You are an adult. Basically, short of getting a psychiatrist to work on the depression, anxiety, OCD..ADHD and whatever other mental health issues you have on top of the ASD, there isn't much specifically geared towards an adult with Aspergers.

My husband could really use OT, PT and speech therapy. I live in a big metropolitan area. Nothing. The people who do work with autistic clients are all geared twards the pediatric population. My insurance will not for those services anyway. We had to private pay for my husband's evaluation.

Any help my husband can get is not specifically autism related.

If you live on the coasts or maybe near a large research unversity, you may be able to scratch up some help specific towards autistic adults. I live in Michigan. There isn't crap. I've looked. Others have asked me. 90% of the help available is for children or LF adults. Someone with deep pockets, who can pay cash and has some connects might scrounge more help.

It stinks you get the diagnosis, but no services are available to help optimize how you live with your diagnosis.

Actually, WrongPlanet is an organization that cares about autistic adults and provides, at least, a sense of community and a lot of coping advice. That's not everything you might want - but it's quite a lot.

Hell, I'm not even asking for a name change. Change the mission statement.

There is nothing wrong in what Autism Speaks does. Fund raise for a cure. Start early childhood intervention programs, lobby state and local governments for better supportive housing and care. All noble and worthy causes. I know people get bent about hearing *cure*, but people fund raise for what they want. Who am I to judge.

My major bone of contention with A $, is they claim to represent the whole spectrum, when in reality it's a pretty specific slice of the spectum. The newly diagnosis, families with minor children and families with adult children who will never live out side of structured care.

It's more misrepresenting what autism truly is than anything the group does. There is a real part of the spectrum that their videos show. But A $ never show adults working, who have relationships, have children and those issues. Why? People won't open their wallets for that? View point that problems are less? Hearing about the abysmal employment and divorce rate for ASD people isn't sex enough?

Be honest with the mission statement, then you'll hear not a peep from me. Keep the name, keep that stupid logo, keep the whole board loaded with NTs, but be upfront you don't represent the whole spectum.

I agree with you.

It's pretty major, though, that they don't include the entirety of the Spectrum. If they did, owing to their influence, more might be done on the behalf of ALL people on the Spectrum--children and adults.

They suck. They don't actually care about currently living autistic people. They see autism as a disease, like meningitis or cancer. They only focus on the worst of the worst cases. One of their articles about Asperger's Syndrome claims that a child with it could be in pain every day and nobody would ever know. I have no idea where they get that idea. Trying to change their way of doing things would be a lost cause, the best thing you can do is tell people about your experiences with autism, and try not to give money to Autism Speaks. There have been blue mustard bottles in stores and stuff with the Autism Speaks logo. Don't buy them.

Basically Autism Speaks is the PETA of autism organizations.

Goatfish57:

Thanks for the referral to GRASP! It does look like the kind of site that Autism Speaks should at least link to.

I love that the OP figured this all out on their own. I like to be fair - they have started putting some small nuggets out for adults. But those are just tokens. They haven't changed the overall message. Also, they make you put in your email before giving it to you and present it like its this great book of information - its not, its just a flier with the same stuff you would find on any autism website concerning adults.

GRASP dissociated from Autism Speaks when they fired their last autistic member off their board, if I remember my history correctly.