Autism Speaks drops cure/prevention from Mission Statement

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It comes from having too much time on my hands so I have had a lot of time to read up on this stuff. I have been recuperating from a tounge replacement operation for the last year. Needing a feeding tube and bieng non verbal does not make one very employable.

The word, "solutions" really sends shivers down my spine. I just hope that they don't come up with a Final Solution of their own.

Small chance of that mate. I guess that where autism speaks can be really damaging to the likes of us is to do with the level of help/support we get and how we are perceived in society.

Actions speak louder than words. We'll see if a change in their mission statement actually changes their goals, or whether it's just a PR stunt.

This is my guess as to what is happening. The new CEO Brian Kelly either because he believes in it or because it is the "politically correct" thing to do wants to change the direction of the organization. As after any significant change there is a large segment of the organization that is resistant to the new direction, ie still views Autism as a nightmare to be eliminated. This group would love nothing more to overthrow Kelly and replace him with a Bob Wright like curabee. In order to effect change Kelly has to do a lot of wheeling and dealing with these people. That is why change in big clunky organizations like Autism Speaks is slow and incremental if it happens at all. This means the necessary apologies may come, but not soon.

What the ND movement is doing with its near universal hostile reaction to the changes in the mission statement is undercutting Kelly and his allies in the organization and validating the curabees. If you are a curabee wanting to revert the changes you now have a convincing(not logical) argument that goes like this "No matter what we do the neurodiversity advocates will always hate us so why do anything for them at all?"

Welp....

If A$ had been honest from the get go that it is a group that mainly focuses on early detection and support for children and the very low functioning, there would be no problem in my book.

And I don't blame the parents, if I had a 14 year old non verbal, in need of supportive care until he/she dies 24/7, I'd be rooting for a cure too. Or at least the peace of mind that my child won't be used and abused in some stated funded group home after I drop dead.

What A$ really showed there are truly two camps in the autism community. Camp one is everyone who needs heavy duty daily care/and or children under 20. The other camp is everyone else. What I really hate about A$ is they became the defacto spokes group for all things autism. And they NEVER clarified that they had no interest in autistic people who are higher functioning adults the ages of 25+.

It will be interesting to see how the donations continue. Adults with level I autism is a hard sell. Do I want my money help a 40 year old person, with multiple degrees, who can use a computer and write eloquently, but can't get employment OR would I rather have the money used for early interventions and other things gears toward children and dependant adults? My husband's generation is a write off. The public doesnt give a s**t about 50 year olds with Aspergers. It will be how A$ works with people in the 20-25 year old age group. Will supports that were so heavily pushed in between ages 2 to early 20s continue? You can all the fabulous supports in college, but if the employers don't care or understand, what happens next? Same old same old? No help for you?

I'll believe A$ has changed when it incorporates people like my husband into their group. Until then, it's spin, or when it honestly changes it's mission statement to what it has been all along, heavily focused on children and dependant adults.

Interesting take on it I must say.

Would you be comfortable describing why Autism Speaks advocating for people like your husband might be useful?

Why A$ talking about people like my husband (or just bout anyone who frequents WP) would be useful...

The great unwashed see Autism as a...

Issue that goes away magically at 18, 21, 26 or whenever the state pulls the plug on supports.

That everyone with Autism will never get married/have children or if they do it will be a train wreck until the divorce papers get signed.

People with Autism can only hold down jobs that are nothing more than heavily scaffold busy work.

And my biggest b***h with A$, Autism only affects upper middle class to wealthy white people. Throw in straight into that mix too. Whenever I read/see an Asperger "success" story, it is almost always some 20 something white guy who's upper middle or above family created the situation with money and or connections. I don't begrudge the person with Autism. He/she is hustling to make the magic work, but who wouldn't benefit from a parent buying a business or getting a moneyed friend to hire you in? The success story is the ASD person who managed to score a job with no help, and to keep it inspite of sh***y co workers and indifferent/uncaring bosses.

Between issues with employment, housing, medical care, and psychosocial stuff, A$ hasn't even begun to scratch the surface of adult concerns.

Which is just fine.

But don't pimp out yourself that you are the talking head for all things Autism.

Less of lighting the White House blue, and more addressing employment discrimination would be a good start.

The article is based on an interview with Dr. Stephen Shore one of the two autistic members of Autism Speaks board of directors
Why Autism Speaks Dropped The Word ‘Cure’ From Its Mission Statement - Huffington Post

This New York Magazine Article has comments by Steve Silberman and Michelle Diament the reporter who wrote a story about the mission statement change for Disability Scoop
A Leading Autism Organization Is No Longer Searching for a ‘Cure’

You mention Autism Speaks neglecting High Functioning Autistic adults. Well I have got to say that is a very complicated issue. For one their has actually been no autism prevalence study throughout most of the world meaning that giving help to adults on the spectrum is at best very hard. And Autism Speaks does actually advocate for them in many ways, for instance they lobbied for the ABLE Act which would create a separate non-taxable account for people with disabilities. You mention that Autism Speaks does not care about adults on the spectrum well just look at what they have done.

What is also the case is that Autism Speaks does acknowledge that the condition is lifelong, its just that's main goal is to find therapies which help autistic people adapt to the world around them. Autism Speaks does as well acknowledge that people with Asperger's Syndrome may well be successful even respects that fact that many do not actually seek a cure.

Autism Speaks by talking about how autistic people struggle with finding actual work is actually referring to those more severely hit on the spectrum. The fact is if you are non-verbal, have epilepsy and can't live independently than it is extremely difficult to find work. Its not an offensive generalization about Autistic people in some ways it is just a fact.

Actually, you proved my point about A$.

The bill is great for families who need to squirrel money way for care. It does nothing for my family or the 20 families in the adult Asperger support group in my area.

Which is fine.

Maybe it is my area. A$ pays lips service to adults with level I autism. The only time it acknowledges my husband's support group is during autism awareness month. Then it was to fund raise for one of the cure walks.

Screw.them.

The person on the phone was SHOCKED, that adults with Aspergers wouldn't want to walk for a cure with multicolored puzzle pieces everywhere. My husband doesn't consider himself a puzzle needing to be solved or in need of a cure.

Adults at the upper end of the spectrum are of no use to A$. They aren't cute kids. They aren't adults with a heart rendering story that people will open their wallet for.
You can spin the adult who is non verbal, with epilepsy and living with health aides into a good fund raising story. MDA made cash with muscular dystrophy doing the exact same thing for decades.

A$ will face the same issues as MDA did. The adults starting calling BS on their fund raising tactics. Not everyone has Duchenne variation of MD. There is a huge group of syndromes and disease under the muscular dystrophy umbrella. Many people with MD got tired of seeing half dead kids pimped out to be pitied for cash.

I have no issues with A$ with how they decide to work, but they are not representing everyone on the spectrum. I support local home grown groups, and A$ does not get a dime or a second on my time.

My DD's Aspie friend has asked their school not to do the awareness week. Seeing cuties puzzle posters made by the same creeps that torment you all year round is pretty sadistic. A better idea than awareness week is people not acting like it is Lord of the Flies or The Hunger Games for the whole school year to people they deem *different*. But then student counsel wouldn't get pulled out of class to make those posters. What a bummer...

I see what you are saying about the ABLE Act in that you need to have been diagnosed by the age of 26 for it to apply to you. But to be honest much of it is probably due to the Federal Government not wanting to overspend rather than a kind of secret agenda Autism Speaks has. Autism Speaks does after all acknowledge the condition as something that is lifelong not simply something which passes by a certain age. And also as well as that their is also a certain age whereby many people with Asperger's and High Functioning Autism have adapted to the world around them. And in that regard having the ABLE Act apply to them may be sort of pointless since they are less likely to be in need of the therapies many younger autistic people need.

I do think their is a genuine misconception among many people that High Functioning Autism and Asperger's is terrible to live with. But the thing is I don't see Autism Speaks as necessarily perpetuating that nowadays. On their web article for instance they acknowledge that many people with Asperger's and High Functioning Autism may not wished to be cured and that it is their every right to choose.

On the other hand with the neurodiversity movement you essentially have High Functioning Autistic people and Aspergians rejecting the idea of a cure, more severely impacted people included. The whole idea of that just seems bizarre. Its like walking up to a person with leprosy and saying we will accept you as human. It sounds good but I really doesn't solve anything. And at the end of the day what right do we have as Aspies and High Functioning Autistic people to tell those more severely impacted not to have a cure?

Well what do you mean adults with Autism are no use to Autism Speaks. Autism Speaks may choose to adhere to the voices of parents who have raised severely autistic children to have a better understanding of the condition rather than High Functioning Autistic people but I doesn't mean they are against them. That's absurd.

Don't personalize the puzzle piece man and act is if it is some personal insult. Because the meaning is really different, it kind of symbolizes all the people with Low Functioning Autism. Since in regards to their condition their is just so much society needs to learn about them in order to make life better. Learning how to do that is sort of like trying to piece together a puzzle. Its not some insult trying to demean you it is a reflection of how Autism Speaks is working to make life better on the spectrum.

Not all people that are anti cure are high functioning. Amanda Baggs is low functioning and severe autistic named KingdomOfRats was anti cure. I agree that the HFA experience by definition is less severe and can be radically different. But if HFA's are too mild to understand LFA's and therfore thier opinions about treating or curing severe autistics are not valid, why should NT ideas be considered valid?. Aspies while much milder are experiecing 24/7 the same traits as severe autistics.

The idea that many HFA/have adapted is misleading. First of all the life expectency of Autistics without intellectual disabilty the definition of High Functioning is 8 years less then average with the leading cause of death suicide. We can debate if the cause of this bieng autism or bieng a small minority in an NT world (NT movement view) but in general adult HFA's are not adapting well and are very much of in need of supports/treatments/.

We do not undestand adult prevelence and adult autism in general so we do not fund help. This is the opposite approach to nearly every other condition where understanding is lacking.

While I am glad they did there are times when I wonder why they bothered expanding the criteria all since so many believe mild autism is not real autism or autism light, we are selfish attention seekers whose opinions about autism do not count, whose problems can be solved if we only stopped whining. That is what we were often told pre knowledge of the autism spectrum. Paraphrasing the popular saying everthing thing has changed but nothing has changed at all.

I do think that High Functioning autistic perspectives are valid especially when it comes to helping Low Functioning Autistic children live easier lives. Take Temple Grandin's invention of the hug machine for instance, that has been used to help ease the stress and anxiety faced by many autistic people. Where I don't think we as High Functioning Autistic people don't have a right to interfere is when it comes to matters like finding a cure, or criticizing the rhetoric/Actions of autism Speaks, because in that instance what right to we have to speak for those people whose lives are radically different. I mean when I grow up I could get married, have a job job and have a good life the same can simply not be said for people with severe autism. And to be honest what right do we have to speak for them?

I do think that neurotypical people are a voice that should be heard in this. Since in the majority of cases they are the ones that have to go through immense struggle to raise severely autistic children and as a result I think we can trust them to understand just how much autism may impact their children.

I would personally say that their are many instances in which people with High Functioning Autism do adapt and many cases where they are still struggling. I personally have seen many success stories, For one one of my best friend's father is a man with autism. But I don't think it is necessarily fair to try and find a scapegoat for our problems in Autism Speaks. If anything nowadays is moving closer to trying to help us not adding to the problem.

Our voice and opinion does matter but its where it is directed. In my view it shouldn't be towards an organization whose goal is to help severely autistic people. This is because as much as you can say Autism Speaks does not highlight our issues enough we still receive most of benefits posed by autism therapies and to be honest it is severely autistic people not High Functioning people that are left behind and need help.

Both NT's and mild autistics have a right to opine on proper treatments. The differing experiences provide needed differing prospectives. Also because it looks like severe autistics are miserable it does not mean they are, that is assumptions on our part. That is why priority needs to be shifted from causes and cures to helping severe autistics communicate with us and visa versa.

I would argue how benificial all these treatments are. Who is the "we" that are supposidly benifiting from these treatments?. If you are a mild autistic older adult there is likely no treatments available to you, and if you are a severe autistic older adult you are likely recieving treatments for general intellectual disability.

The idea that somehow when you are an adult with High Functioning Autism less therapies are available is kind of not true. I would argue that same number of therapies are available it is just that they are not autism specific. E.g. an autistic adult instead of receiving help in ABA therapy may get help from a psychiatrist instead. It only comes across that way that High Functioning Autistic adults aren't being helped because the therapies being provided to them are not specific to autism. So as a result we may get an idea that autistic adults don't have many therapies available to them when in fact that's not the case.

As someone with Moderate to severe Asperger's you may disagree quite strongly with me on this and I am not afraid to be proven wrong in this area.