Who’s On the Board?
December 13, 2008 by Kristina Chew, PhD
Filed under Health
Earlier this week, mega-autism-organization Autism Speaks announced the appointment of three new board members, Artie Kempner, lead director for the NFL and NASCAR on FOX; Billy Mann, President of International A & R – Labels and President of Global Artist Management, EMI Music; and Jack Schneider, managing director of Allen & Co.. Kempner and Mann are both fathers of autistic children.
It’s been noted (by Lisa Jo Rudy at About.com) that the new board members include no one who’s autistic. With the rise of self-advocacy organizations like ASAN, and also GRASP and many others, the absence of an autistic member on Autism Speaks’ board seems more and more puzzling. The Interagency Autism Coordinating Committee lists Stephen Shore, a self-advocate, on its roster, and Paula Durbin-Westby, a member of ASAN, was asked to present at the November 21st IACC meeting (and you can view her presentation here). The Autism Society of America has a panel of people on the spectrum of autism advisors; Shore is also on the ASA’s board as is Valerie Paradiz. And ought not most or all autism organizations have an autistic individual on their boards?
I went to school with the son of a celebrity who does various fundraising work for Autism Speaks. His son (who I knew well but have lost contact with since graduation) is an adult with Aspergers syndrome or HFA (not sure which- just know it’s one of the two). I can’t believe he’s the only high profile person who does charity work/fundraising for the organization and has an adult child who is coping with it. If he and the others would speak up I really do think something would change.
It’s really weird that now, 4 years later, I’m taking care of a PDD-NOS child after knowing so many people with ASD and having contact with several high profile people involved in it before he was even born. I think it really did help equip me though, especially knowing so many high functioning young adults with it. Funny how life is, eh?
I think that’s yet another area where the autism world could follow the various Downs Syndrome societies’ leads…it’s pretty rare to find any large Downs Syndrome group which doesn’t have people with Downs sitting on their boards. With the emergence of so many autistic people in the advocacy movement it’s a crime that such a large and influential organization is not taking advantage of their knowledge and passion.
Organizations like Autism Speaks won’t put autistic individuals on their board because then they would be forced to acknowledge that autism isn’t the big bad boogeyman lurking in the closet that they make it out to be. They’d no longer be able to capitalize on fear and painting autism as a tragedy. Bad for “business,” dontcha know. Ugh.
Autism Speaks has the noble purpose of curing autism. It should not place people on its board who are opposed to that purpose.
There are plenty of autistics hoping for a cure. They should serve on the board if their doing so better enables Autism Speaks to meet its purpose, not because they are autistic.
Mayfly, do you see any benefit to integration? While I agree that having a board member that doesn’t support a cure is probably not appropriate, I think one of the problems is the title of the organization “Autism Speaks”. If it were “Parents looking for a cure organization” I think it would be appropriate to exclude autistics, and autistic parents. The name of the organization implies inclusion and there lies the irony.
From what I have been able to ascertain, charity organizations without integration seems to be a particularly North American phenomenon in as much as we are talking about autism organizations.
mayfly – other organisations, such as Hearing Voices and the NDA, choose to place people with the relevant condition onto the board or, at the very least, in some sort of advisory posistion.
They do this out of basic ethical obligation to fully include the people that they claim to serve, irregardless of pragmatic arguements. This is becoming less and less of an issue, and can extend to having people with the condition sitting in on policy reviews, service reviews and even job interviews.
Where is the evidence that Autism Speaks is even attempting to keep up to date with these developments?
Here is a nomination I would submit, Thomas McKean. While Tom is pro cure, he is also pro inclusion of autistics in the workplace, education, housing, services etc. He’s also autistic. At least then Autism Speaks could claim to at least have some form integrative approach to autistics, some autistics.
It would also be nice if Autism Speaks had a disclaimer that read : Autism Speaks is a parent led organization and we are inclusive of all parents looking for a cure. We are not however, inclusive of autistics in as much as we do not have any that work for Autism Speaks and we have no near term objective to include autistic voices, even pro cure autistic voices, in our policy setting committees and boards.
Here is a non-autistic person I would nominate: Tom Harkin, Senator from Iowa and champion of disability rights and services.
I agree that Autism Speaks is a poor name for an organization without autistics on its board. The old Cure Autism Now, better matched its purpose.
I suppose the people nominated were so chosen for their ability to bring money into the organization. ( Some people argue that this is the real high purpose of Autism Speaks.)
It is a legitimate question to ask whether the goal of Autism Speaks is better advanced through an erudite autistic speaking for cure rather than another
money source.
Tom Harkin is a big fan of alternative medicine. Has he spoken about the mercury issue. I was aghast when Autism Speaks put SafeMinds officers on its board. I don’t know Senator Harkin’s view on the mercury/autism nexus, but I believe most CAM supporters also support the mercury hypothesis.
“Tom Harkin is a big fan of alternative medicine. I don’t know Senator Harkin’s view on the mercury/autism nexus,”
I could care less about either, Senator Harkin has been a champion of disabled folks.
mayfly,
Many would take issue with the “nobility” of an organization seeking to cure people without considering their views of the issue of “cure,” while raising and spending huge sums of money toward that end – meanwhile services for those who are here and struggling go unfunded because the endless search for the “cure” is the organization’s brass ring. The diversion of funds from services to “cure” has hurt families horribly.
Similarly, the organization’s insistence on pushing its own agenda in some of the state legislation on insurance, without properly collaborating with local individuals knowledgeable about the matters, has led to some less than desirable and near-disastrous results, just so that they could say they got legislation passed. They need to start listening to people besides themselves – they are a new organization, and they don’t have all the answers.
The fact that there’s something called “neurodiversity” seems to have taken Autism Speaks by surprised and rather than acknowledging this, they seem rather to be proceeding as if it’s not something that exists, in contrast to the ASA.
@Mayfly: what’s your definition of “cure” as it pertains to autism? This is a serious question.
I ask because I suspect that a lot of people who say they seek a cure for autism, when asked about the details, are really seeking mitigation of handicaps concomitant with autism. In other words, it’s all about mitigation of internal sources of severe sensory and medical distress, acquisition of expressive language, self-care and eventually household-management skills, academic and social skills required to succeed in mainstream education and employment environments, and as citizen and consumer in the mainstream society.
If those goals are met, they stop feeling a need to eradicate the other characteristics of autism. It’s fine if the individual thinks, senses, and experiences emotions differently than the majority, as long as s/he has insight into those differences and can interact with and navigate through that majority. It’s fine if the individual’s sensory, aesthetic, and social preferences and needs are different from the majority’s, as long as the individual is aware of, and acts upon, knowledge of where it is safe and not in violation of others’ boundaries to express them.
Is that what you mean, when you speak of a cure?
Or does cure involve more than that?
no, autism organizations whose goal is to find cure and prevention should not have neurodiversity proponents with autism on their board. Kristina Chew might as well be puzzled as to why the NAACP won’t let members of the ku klux klan on their board or why the DNC won’t allow five republicans to be on their board just to be fair or allow members of the american nazi party to be on the board of the jewish antidefamation league. From reading Dr. Chew’s post, it seems that she thinks that neurodiversity proponents should just be able to take over the capital of those who have worked hard to earn it who have a view that is diametrically opposed to those who wish to take over their capital, so the answer is clearly no, they should not have autistics on the board who are against a cure. Likewise the IACC should not include Shore or Paradiz on their boards or allow them to be involved as it grew out of the combating autism act which specified that it’s goal was the curation and prevention of autism.
Jonathon – quote where Kristina said it MUST be a ND proponent, rather than a general person with ASD.
You don’t have to do this, but failure to do so will make it look like you’re just putting words in her mouth.
Jonathan has some obvious points on his blog Autism’s Gadfly.
There’s a grand irony in the fact that Autism Speaks has no autistics speaking from the board.
We’ve seen this kind of scam before.
she talks about ASAN, and GRASP, organizations that not only have expressed that they were diametrically opposed to all of autism speaks goals, but Ari Neeman, ASAN’s president has claimed that autism speaks is somehow responsbile for the murder of autistic children. She says because of the rise of ASAN and GRASP that it is a surprise that autism speaks does not put autistic persons on the board. She might as well say that with the rise of the ku klux klan she is surprised the NAACP has not put a member of the KKK on the board. Not putting words in her mouth at all, I don’t see how else Kristina Chew’s comments can be construed. Not hard to understand at all except for angry ND folks such as yourself.
Saying that there are people with autism who could function at the level required, is not the same is not the same as saying that they are the ONLY people with autism who could function at that level.
She drew parallels with other organisations which have no trouble acheiving inclusion. This is NOT the same as saying that they must be followed in policy as well as practice.
You fail to see the distinction, and therefore wrongly accuse her of suggesting that only these people are put on the board. She may want such a person on the board, but that is different from saying that they ’should’ be on the board.
Nice try though. I especially like the attempt at an insult tacked on the end.
Johnathan, cut the histrionics. It really discredits anything you have to say. Honestly.
Kristina, I totally agree with you, of course. Jat, well said. Spot on.
Of course, this is part of the larger problem that Autism Speaks does not see itself as a disability organization. It almost never collaborates with other disability organizations on what ought to be common issues. Their legislative efforts almost never seem to involve strengthening the ADA, or better housing programs, or even IDEA. The organization’s noted lack of involvement in disability issues rather leads one to suspect that they’re not thinking in terms of autistic children becoming adults with disabilities. Apparently, they want or expect all autistic children to be “cured” by then. Given this organizational attitude–one that is not shared by the various Down’s organizations mentioned here and whatnot–it’s not surprising that the organization would be so tone deaf in terms of appointing an autistic adult.
Re-read the text of Public Law 109-416, which clearly specifies that at least one member of the IACC board be a person on the autism spectrum. Furthermore, there is nothing in the IACC part of the law that limits the number of members on the board. In addition Public Law 109-416 has a broader mandate than simply “cure and prevention” of autism. It also has a broader intent than basic research into causes of autism leading to cures. Research into services and supports is clearly implied.
Look at the first few paragraphs and you will see the following sentence (with my asterisks for emphasis):
“Such research shall investigate the cause (including possible environmental causes), diagnosis or rule out, early detection, prevention, *services,* *supports*, intervention, and treatment of autism spectrum disorder.”
In addition, look at the section that establishes the IACC. “…to coordinate all efforts within the Department of Heath and *Human Services* concerning autism spectrum disorder. Sec 399CC (b) (1) “…and access to services and supports for idividuals with autism spectrum disorder.”
For membership of a person on the autism spectrum, reference Sec. 399CC., (c)(2)(A).
Look at Sec. 399(DD) (a) (9) for language in the IACC’s mandatory Report to Congress regarding services and supports.
(If anyone can find a copy of this in html and not pdf form, I’d appreciate it. I can’t copy and paste like I want to and I have severe time constraints today.)
Sarah, disability supports and services aren’t enough. Autism Speaks should be seeking a cure for the impairments prevalent in autism like they’re supposed to. How about thinking about autistic children becoming adults with disabilities, who will need many abilities when they reach adulthood, and would benefit from a cure to prevent them from being disabled when they grow up? When you imply conflict between the organization’s goals and the idea of appointing an autistic adult, I wonder what viewpoint is had by the type of autistic adult you would like appointed.
First off, autistic adults who are disabled are a reality. While Autism Speaks goes off on its quest to “cure” all “impairments” through medical means, that doesn’t do a thing to improve the situation with regards to housing, employment, and other services which are needed by autistic adults and soon-to-be autistic adults *right now.* How many years will this “cure” take, and who gets left behind in the meanwhile while the organization funnels almost all of its resources into that (IMO pie-in-the-sky) goal?
Again, look at other disability organizations. Some of them may be looking for a cure, some not, but that’s not stopping most of them from participating in cross-disability alliances and putting resources towards goals such as strengthening the ADA, etc. Autism Speaks is a HUGE outlier for a disability organization. Like others have said, you don’t see many Down’s organizations holding out hope that all DS children will be magically “cured” before reaching their eighteenth birthday.
Right now, Autism Speaks has pretty clearly established itself as an organization which wants to “cure” autism through medical research and not much else. I don’t imagine that I would agree with a hypothetical autistic person appointed with the current organizational philosophy. But, if that person were to have legitimate decision-making power, then at least the organization would be giving some input to an actual autistic person. I think that’s an important step, even though that in and of itself probably wouldn’t change the organization that much, and I don’t pretend that I would much like this hypothetical organization.
I don’t know if the organization’s goals prevent it from appointing an autistic adult, necessarily. (That is not what I said, in fact.) I suppose an adult which shares their ideas would fit in. I do think that their general philosophy is very inconducive to the idea of autistic adults a) existing, b) acting as advocates for themselves and other autistic people, and c) having actual power within a very paternalistic organization. I don’t know how else to explain their failure to appoint a single autistic adult in its year of existence. Do you? It isn’t because there are absolutely no autistic adults who approve of the organization’s goal.
I thought Autism Speaks had enough money to fund both services etc. and research into cure. But since many other disability organizations are working on services and supports and strengthening the ADA, I don’t see why it’s that much of a problem that Autism Speaks specializes in funding research for a cure, besides the consideration that the AS has a lot more funds compared to the organizations that work on services.
I haven’t been certain about the real intentions of Autism Speaks for a while. I’ve had a lot of suspicions about the top leadership of that organization. I haven’t heard of them funding much rigorous promising research until recently, so I thought they didn’t want to really find a cure, and that they were only pretending to be helpful. But I’m not sure what they’re really up to lately and I’m not sure why they won’t include any autistic adults for leadership positions. I really wish they would provide stakeholders with some influence. That organization has seemed so out of touch with a lot of people who have been involved in trying to set various aspects of policy about autism. I’m still trying to figure it out.
Jonathan, your attempt at analogy is a failure. Your equation is that NAACP = Autism Speaks. NAACP exists for, um, “colored” people. Ergo, it should have “colored” people on its board. Whether or not they agree with the NAACP philosophy–or even its name, given how dated it is–really is moot. Autism Speaks, as an organization existing for “autistic” people, ought to have autistic people on its board. Whether or not they agree with its philosophy or even its name, given how ironic it is, is moot.
To continue with your analogy, neurodiversity is to Autism Speaks as the KKK is to the NAACP. It’s a terrible fallacy. If the NAACP were ever to find a person of color who is also a member of the KKK and who also wanted to be a member of the NAACP, then perhaps your analogy might find some minimal footing. That’s unlikely, and it’s offensive that you even make the effort to equate autistic neurodiversity advocates–who are autistic, as a person of color is a person of color–with the KKK. It’s one thing to BE a member of the group in question and challenge the view of the majority. It’s something else entirely to be a member of what was once a majority and challenge the group in question based on hatred alone.
No, Emily I believe the analogy is apt, the persons on the board of autism speaks have children far more severely autistic than you and most of the ND crowd. Many of these people have asperger’s and not autism. The persons with autism in the ND crowd are nothing like those who are represented by the parents from autistic speaks.
I find it offensive that neurodiversity persons seem to think that they should be represented by an organization that they clearly despise, say the most nasty inflammatory and untrue things about it possible and then expect to be welcomed on the board with open arms by the people who visciously attack them and their stated goal.
@Phil Schwartz. What would I consider a cure?
To use the language of DSM-IV, “that she developed peer relationships.” I want her to have friends.
I want her to be able to enjoy the gladness of others.
I want her to be able to participate in the social give and take which makes life enjoyable.
I want her to communicate.
I don’t know if my daughter has an imagination. I don’t know if she has dreams while she sleeps. I don’t know if she has has dreams for her life. I suspect that she does not. I’d like that reversed.
If your asking whether I’d be satisfied if she became like many of the autistics who post here, yes I would.
Autism’s causes are eclectic. Genetic yes, but what’s involved is myriad. How it manifests itself is also highly varied.
Autism for my daughter is horrendously incapacitating.
It seems to me that Autism Speaks will limit itself, ultimately, by not truly acknowledging that there are autistic adults and that there is neurodiversity. The ASA and the NAS with its Think Differently campaign have clearly made efforts to reach out to and to include autistic individuals.
Two points I’d like to make:
One: Autism Speaks has a robust program funding community projects FOR people with autism. This means that they are doing more than “just” seeking a cure. Problem is, in seeking funding for such a program, I felt we should avoid Autism Speaks because it is so controversial – and I’d hate to have people with autism (or their parents) avoid the program because of the funder.
Two – Obviously, the parents who now make up the board of AS will soon have ADULT children with autism. Many (not all) will be quite capable of speaking for themselves. It’ll be interesting to see what happens as those kiddos start to question their role in their parents’ lives.
Overall, I think kids with autism are underestimated in terms of their ability to think and act for themselves. I KNOW such is the case for many adults with autism.
Lisa (www.autism.about.com)
Jonathon seems to forget that there are people with aspergers who also have children with core autism.
He is also continuing in his rather amusing crusade to proclaim that encouraging organisations to follow what is becoming standard practice is somehow an attempt to load the board with ND proponents.
Having a person with autism in the board does not mean it must be a person with ND views, nor has Kristina said it should be. He has yet to justify why he views this as the only option being put forward by the ND crowd.
3 attempts at doing so and 3 failures is not a very good record.
jonathan,
Autism Speaks doesn’t purport to speak for only those individuals with the most severe forms of autism, it’s At Autism Speaks, “goal is to change the future for all who struggle with autism spectrum disorders.” (from the Autism Speaks website). Furthermore, it doesn’t purport to speak for only one point of view, it “aims to bring the autism community together as one strong voice” (also from the Autism Speaks website). It is disingenuous to claim that anyone who has HFA or Asperger’s has no legitimate voice in the discussion, when Autism Speaks is claiming or striving to speak for them. It is also inappropriate, at best, to deny such individuals a voice in the organization which claims to speak for them. To set one’s goals without input from the people one would impact, and then claim to speak for them, is paternalism at its worst. If Autism Speaks cannot find any adults with Autism who agree with their position, maybe there is something wrong with their position. If they can, there is no reason why they don’t have anyone with Autism sitting on their board.
Jet and Dedj: I do not believe they are failures that is in the eye of the beholder. As I am not personally involved with autism speaks in any way I have no idea why they do not include persons with autism on their board. Maybe all of these people who question why there are no autistics on the board could send them an email and get some sort of response. It seems that the ND movement wants to make all sorts of sweeping accusations about AS without getting their side of the story as I did when they were falsely accused of trying to restrict the free speech of that young man who made the t-shirt by the ND movement. Also when I emailed them complaining about their funding of the Mottron lab who colloborates with michelle Dawson they wrote me back, saying that grants are carefully reviewed. Though I was not happy with their second response they gave me one. Why don’t you contact them and ask them why there are no autistics on the board, perhaps they will give you an answer.
Dedj: It is you who have failed to explain why this complaint about autistics being not being on AS board always seems to come from ND proponents who not only don’t agree with anything AS has to say, but constantly malign them and their reputation and say things that are not true yet seem to want to be on the board of this organization. Is it that you really care if an autistic who disagreed with you were put on the board? How would that help your cause? Or is it that you want to take over the ready made capital AS has for your own agenda that you are not capable of raising yourself? You have failed miserably by not answering those questions. Also, if you feel that anti-cure autistics should be included on the board of AS, I am still waiting for an explaination of why people who have been called eugenecists by these people, have also been accused of being responsible for the murders of autistic children by at least some of these people should welcome such people with open arms and put them on the board of their organization or be involved in the decision process. It seems very strange to me this has not been explained to me and if you cant explain this to me it is you have a track record of abysmal failure not me.
Autism is so diverse, there is no way to speak with one voice. Too many who are high-functioning the linkage of autism and disability is an insult. To many parents of low-functioning children it is inexplicable how anyone could be against a search for a cure.
There is more difference than commonality between low and high-functioning autism as manifested in the daily lives of individuals. Why some members of the ND community fail to see that is beyond me.
If someone were to say, “I like being autistic, it is helpful to me, but I recognize your daughter has a different virulent form which is greatly incapacitates her while offering no benefit.” that would be great. But, I won’t hold my breath.
Wow, let’s see if we can’t try to make some sense out of Jonathans last post.
“It is you who have failed to explain why this complaint about autistics being not being on AS board always seems to come from ND proponents…….”
I never said it wasn’t always ND proponents, thus I have no responsibility to prove that arguement. Besides, the answer is obvious and more or less self explanatory. The people that argue for inclusion will be the ones that argue the most when they think it’s not happening.
“Is it that you really care if an autistic who disagreed with you were put on the board?”
I’ve don’t disagree when other organisations find someone with the condition they claim to support to put on the board or the panel. In fact, it seems the bang-up modern ethical thing to do. What has AS said to you about it, seeing as you’re so eager to recommend emailing them?
“How would that help your cause?”
It wouldn’t, unless by ’cause’ you mean ‘inclusion’.
“Or is it that you want to take over the ready made capital AS has for your own agenda that you are not capable of raising yourself?”
Of course I would like to take over that capital – any person who advocates a position that requires funding would! I’m not sure where you get the idea that ND ‘can’t raise these funds’, ND is an approach not an organisation, thus the question of funds is pure misdirection.
“You have failed miserably by not answering those questions.”
I’ve not made the points you think I have, thus I’ve not had any responsibility to answer the questions. Also, this is the first time you’ve actually levelled them at me, whereas you’ve attempted and failed to back-up your accusation about Kristina a fourth time now.
“Also, if you feel that anti-cure autistics should be included on the board of AS,”
I don’t, and have never said so. In fact, I’ve said that inclusion of an autistic person and the inclusion of an ND autistic person is not the same thing at least twice in responses to you. Please pull your thumb out and actually read them.
“…and if you cant explain this to me….”
I’ve already made several attempts, as have others, yet you persist in accusing others of arguing for inclusion out of some nefarious agenda to load the board with dissenters. Although that would be a good outcome for the ND ’cause’, the real arguement is about why AS does not appear to be keeping up with the current movement towards inclusion.
So, apart from not saying what you’ve said I have, and actually saying the opposite at least twice, that was actually a good attempt from you Jonathan.
We really do need to email them and ask why, but please, don’t defend them using bullshit.
well Dedj, when you have emailed them or called them and gotten a response let me know. If not in this forum, then you can email me privately at jmitch955@aol.com. In the meantime, I am not going to continue this dialogue with you as it is pointless unless you get an answer from AS themselves since I am not them and can’t answer the question. If you don’t contact them and attempt to get an answer yourself I can only assume you have some other ulterior motive and you yourself have admitted you would like to acquire their capital which I would think would be tainted money from your point of view. Until you have emailed AS or phoned them and attempted to find out from them personally why they have not put someone with autism on their board this dialogue is over.
“If you don’t contact them and attempt to get an answer yourself I can only assume you have some other ulterior motive and you yourself have admitted you would like to acquire their capital which I would think would be tainted money from your point of view.”
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.
Jonathan, your analogy is still a failure. The KKK exists to destroy people who are in the NAACP, or at the very least subjugate them. Neurodiversity does not exist for other of those reasons re: Autism Speaks. And you don’t know what my child is like because you don’t live with him; I do. Your assumptions, as wells as your fallacies, are showing.
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.
It’s no wonder that our steps as an “autism community” are two steps forward, one step back.
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
Jen,
I 2nd your rant and agree wholeheartedly. I’m a bit late coming to your opinion but I’m getting there faster everyday.
That was quite a rant. Regardless of whether a person is “neurodiverse” prone or cure prone, it is still a standard these days to include on the board of nonprofits representing specific groups members of those specific groups. It just is. And having that actually DOES help get done some of the things that you’re arguing need to be done. You’re saying that people should focus on their kids and their kids’ futures, etc., but advocating as some do to have representation on committees and boards is an important means of accomplishing exactly that, not just for someone’s own child but for those of others, as well.
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.
And also, I don’t care who’s side anyone is on, comparing something as well intended and self-representative as neurodiversity is to the KKK is…simply offensive.
Following up on some points by Lisa Jo Rudy…….it could be argued that there are indeed autistic persons on Autism Speaks’ board or working for the organization, but undiagnosed………
Emily pretty much has it bang on.
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.