AUTISM SPEAKS

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You're quite simply wrong about that. John Robison is now on their science board and he has considerable influence over where science funding goes. I think you should have more faith in the fact that I wouldn't associate with them if I didn't see potential for a positive result.

I do hope you're right, Alex, but I don't have much faith in it - not at least until I've seen evidence which proves what I've said wrong, anyway.

With (a) all the history with this organization and (b) that there are still a lot of changes they should be make (in my opinion), it's understandable that people might be feeling upset or skeptical. The fact that Autism Speaks provided some funds for this doesn't automatically mean they are going to make other changes; we'll have to see how things play out.

I think Alex has good intentions, but just needs to acknowledge that this is going to be hard for a lot of people to take in and understand. Peoples' minds aren't going to change overnight over something they feel so passionate about; it will take time and seeing evidence of substantial changes.

Alex, you've made a few posts in various threads where you've said (and I'm paraphrasing here) "At least I'm initiating a form of change and doing something other than just sitting around and complaining about Autism Speaks." I think it might be helpful for you to talk to us about what we can do and maybe give us some specific suggestions on alternatives to just complaining. No one wants to be as ineffective as comments like that make us sound, but people might not know what they can do themselves. And, the anger people have been expressing on the forums here can be a positive thing, if it's directed in a constructive way.

I think that, with WP being a major autism resource on the internet, you don't need Autism Speaks.

And I also think you are being fooled--badly. I know we often have this idealistic tendency to believe the best of people, to be naive enough to think that people will change just because they say they will; but it's so very important to look for evidence of that change--strong, long-lasting evidence--before we trust people who have very recently been slandering us.

Don't let the big-name publicity dazzle you. This is not a good move. If they really had turned over a new leaf, if their board of directors was made up of at least 50% actual autistic people instead of just a token autistic on the advisory board who can be easily outvoted, if they had taken pay cuts and begun spending at least 80% of their resources on helping living autistics rather than funding genetic research, if they had made public apologies--on the national media--about what they had said about autistic people in their "awareness" campaigns--then yes, I'd trust them. But not until then.

Just because they believe they are doing the right thing does not make them trustworthy or helpful. Many people have done horrible things, believing they were perfectly in the right.

I've seen too many autistic people hurt because they trusted a charismatic person who claimed to have reformed. Don't be one of them.

Wow, wouldn't that be awesome?

Many of the parents I've met who are strong supporters of Autism Speaks do donate to them because they hope for a cure, though. I wish more parents and other donors were vocal about wanting to see them spend their money on funding support services, as opposed to other initiatives. Money talks--maybe then Autism Speaks would listen.

I agree; I've talked to too many parents who can't get the money for simple, useful things like a weighted blanket or an autism-friendly sitter for a night out--and those things would just make families' lives so much better. Not to mention the many adults who are even worse off for services, missing things that are blocking them from getting a job or living on their own. So many adults could get their own apartments and stay out of group homes if they had help with shopping, cooking, bills, that kind of thing--and it costs so much less than an institution ever could. But instead of listening to these needs, Autism Speaks just spends the vast majority of its money on genetic research, and sends a tiny, totally inadequate token amount to a few autistics whom it then exploits for publicity.

If you really have to be associated with an autism charity, what about these?
International Autism Coalition, a relatively new group focusing on equipment and services
Autism Society of America, mainstream and well-established but has the drawback of being specific to the USA
Autistic Self-Advocacy Network, an autistic-run group centering on disability rights

There are a great many smaller, local groups that could also use the publicity, and would actually do useful things with it. You can't trust people fully; but at the very least you can look at their record.

Way to go, Callista!

Callista speaks.... wisely!

I think you fail to realize that one person on a board of directors can make a difference. You oversimplify an organization made up of many people with differing views. The people I'm working with are recent hires to autism speaks who do not agree with past actions. You're taking a monolithic view of a very diverse organization.

We are doing something good . . . Getting a more positive image of autism to a lot of parents. That is my goal and we're succeeding. We're not being used because the only thing autism speaks gets out of this deal is their name listed as a sponsor. If they gain any credibility from this, then it is deserved credibility for finally supporting an autistic view of autism. They need to be educated, not merely chastised.

interesting topic! I did work for DES/DDD in AZ for a while as an independent habilitation contractor one on one, in addition to working in group homes and sheltered workshops. Of course there were a garden variety of "disabilities" but I found a lot of abuse of the "entitilements". One lady had only ONE kid with benefits, but I ended up babysitting her whole brood of 4 at times 3 of which were in diapers. well there were people i worked for that desperately deserved some respite care and I even went down to the capitol to support those lobbying for getting more benefits. I think a grass roots program would be great, so people could barter and exchange services. It's the only way we are going to make it in this economy. zig

Unless I am mistaken, there are 37 members on that board. I don't see how one member will make so much of a difference that we should change our whole opinion of a massive oppressive organisation, especially when the board of directors remains 100% NT.

I'm not asking for benefits. I have gifts that are going to waste because of a lack of advocacy, and in this respect everyone loses, not just me.

There is a common practice here of electing critics onto governing boards, focus groups, stakeholders committees and steering groups. The government does it, banks do it, my former employer did it. It looks good, it looks like diversity, it looks like it accepts the dissenting opinions.

It also silences the criticism.

Alex, I think you have the right goal and I also think you are taking the right approach by working work with Autism Speaks, by building bridges, and by gently nudging them in the right direction. Organizations like AS evolve over time, and I believe you can influence that evolution by working with them. Ignoring AS will not make them go away. Also, I agree that one person on a board can make a difference, for example when a vote is split down the middle. There's one person on the spectrum that is on their board now, perhaps in another year there may be two, and after that three...etc.

Keep up the great work!

I'm hopeful it will be a start for change on the horizon for all autistic people.

you fail to understand how boards operate. It's not as if all members of the board vote and that's it. If someone has an opposition to a research study, they can convince all the other board members not to support the study. And John has done this successfully. You should talk to him about it. I'm sure what he tells you will satisfy you and convince you that he's not just a token autistic.