There is nothing on the autism speaks website that talks about inclusion and consultation, even at the local level.

Contrast this to their equivilants in autism and other conditions, such as the NAS, NDA, Hearing Voices and they look rather odd.

Hell, even CSCI and the DoH can get service users involved in regulation and command papers.

I’m personally not a member of any “sect” of autism. I’m a parent of a child who is autistic. I’m also of a somewhat philanthropic bent and have a strong belief in fairness in representation, both things that lead me to (1) work in my community not just for my son but for others who are autistic, (2) work in the broader community ditto, and (3) expect that large nonprofits who profess to represent/help/work on behalf of a specific population actually include members of that population in their deliberations so that my goals (1) and (2) can be furthered and supported. That’s not sectarian. It’s fairness. It’s ethical. It’s what is right.

I 2nd your rant and agree wholeheartedly. I’m a bit late coming to your opinion but I’m getting there faster everyday.

This is NOT a war, and there are room for a lot of different viewpoints within the autism community. I’ve got autistic triplets who are 13 years old, some of whom are doing “great”, some of whom aren’t having an amazing time right now. I have kids who are talking and fully integrated, and kids who will most likely never talk and would quite possibly not recognize the word autism if you handed them a diagram or screamed it at them, and kids who fall in the middle ground. They are ALL people deserving of respect and love, and I haven’t yet found any prejudice against any of them from any individuals in the Neurodiversity community OR “cure” communities. Amazingly enough, I’ve had ND people email me and actually sympathize as well as empathize with me and my son, I’ve definitely had people from both “camps” call me out on occasion for various things that I’ve said and felt (which is fair), but BOTH camps have been totally accepting of all of my children.

It seems to me that everyone here at least agrees that autistic people ARE people, with rights. Yes, it is a shame and embarrassment that Autism Speaks doesn’t have an autistic person on their board- if they’re claiming to “speak” for autism, then perhaps they should look at whether they’re speaking for autism or parents of autistic kids (and yes, there is often a difference).

While I can’t say that I am a fan of Autism Speaks by any stretch of the imagination… what if we all take the passion that we’re spending quibbling about board members and neurodiversity and cures and use it to actually freaking accomplish something? While Autism Speaks may be a big deal in the press because of Bob Wright and NBC, it is absolutely beside the point as far as living with autism goes, as a parent or as an autistic person. Ignore them if you don’t like their policy! The NT world doesn’t give a freaking fuck what they say. For every person who has seen “Autism Every Day” there are 50 people who have seen you with your child in the grocery store, or 50 people who have seen you in class or on the street. I don’t know about the rest of you, but I’ve got 3 kids who are all over the spectrum and I’d appreciate a bit more attention going towards things that are actually going to make their lives better rather than pissing matches between ideologies.

I am not saying that the neurodiversity vs. cure syndrome which seems to have taken hold of so many of us isn’t valid- I’m just saying that for a change maybe we should all concentrate on what will make life better for autistic people. Children, teens, adults- it doesn’t matter. Try to spend your time dealing with things that affect you or your children’s lives directly, and everything else will fall into place. Start planning for your child’s adulthood, and work on that. If there’s anything that I’ve learned in my 12 years of dealing with autism communities it’s that all of these bloody, divisive controversies generally pass. My guess is that 5 years from now the “cure” people will have happily (and gratefully) assimilated the ND autistic adults, and that the ND adults will have have worked very hard to help all of us reach out to those of our children who are still seemingly unreachable.

I’m not sure about anyone else, but I have autistic children, and I want to make their lives as good as they can possibly be. I don’t see any boundaries on that goal. I also don’t see any boundaries for autistic people making their own lives as good as they can possibly be, and IF they want my help to do that, I’m there for them in spades.

How about if we just quite with the freaking sectarian bullshit and see what we can accomplish then? There’s no reason that we can’t all have disagreements and still agree that what we want is for our children and autistic adults that we know to be treated with respect and dignity, with all of the opportunities that are available to the rest of us.

/rant over

And it’s nonsensical to say that you find it offensive of neurodiversity folks to want to be represented by an “organization that they clearly despise.” That’s not even the argument here; it’s that they’re not represented ON the organization’s board, a situation that falls outside the established norms for nonprofits, etc., that purport to work on behalf of a specific population. Just because you don’t like the “neurodiversity” people doesn’t mean that autistic people don’t deserve representation on the board of Autism Speaks.

Don’t critcise people for assuming whilst making assumptions yourself, it makes you look like a hypocrit.

I’m not sure where you’re going with the last comment – if an ND leaning organisation had their money it wouldn’t belong to AS, therefore would not be tainted money.

The nature of arguing for services means that they must be funded. Funding that goes to one person by definition cannot go to another person. This should not tax a person of your intellectual level, yet it somehow does.

You have failed to substantiate your interpretation of my words, and suddenly you pretend your responses to me were all about AS. They weren’t and any reasonable reader can see that you have not addressed the points made to you.

Hiding won’t change that and we both know it.

Goodbye.