Up until this week, I assumed that obvious answer was "yes." In fact, it never occurred to me that this could be a controversial issue. But apparently there are many people who feel otherwise.
Some suggest that it's unreasonable to expect Autism Speaks to include autistic adults in their organization because most of the best-known, most articulate adults with autism are not supportive of a "cure." And, after all, they say, Autism Speaks is all about curing autism.
But of course not all articulate adults with autism are "anti-cure." And even if they were - Autism Speaks is NOT all about curing autism. They are now involved with advocating for insurance for families with autism; providing grants for community programs for people with autism; providing diagnostic tools for parents and doctors. In fact, they even have a large portion of their site dedicated to education for people with autism.
Who knows more, cares more, or is more invested in financial, medical, recreational, vocational and educational programs for people with autism than - people with autism?
Several people have also suggested, in essence, "If people with autism want their own organization, they can just go out and build one. Then, they can fund it with their own dollars."
OK, let's make sense of this. Autism Speaks exists to help people with autism, who by definition have challenges in social and communication skills. Yet, instead of empowering those people, they seem to be saying "take your compromised social and communication skills, and go compete with the wealthiest, most successful media giants in the world. Good luck raising funds, since those folks have gobbled up the vast majority of available resources." Hm. Having a tough time making sense of this, after all.
Then there's the argument that adults with autism who are verbally and socially capable enough to play a significant role in Autism Speaks aren't autistic enough to be considered representative of "people with autism" in general. Thus, people with autism who are verbal and socially capable should be excluded from Autism Speaks. Logically, then, only people with autism who are NOT verbal and socially capable truly represent "people with autism." And, since they're not verbal and social enough to play an active role in the organization, they can't be part of Autism Speaks either.
Of course, as is well known, the autism spectrum is very broad - broad enough to include people with Asperger syndrome AND people with classic autism. Those groups are very different from one another, but at this point they are all considered autistic. Are we now at the point where we have created a litmus test for "real" autism? Apparently, at least in some opinions, the answer is "yes."
If the arguments I've cited hold water (and, obviously, I don't believe they do), then really only the parents of children with autism -- and friends of those parents -- should have the right to represent people with autism within the Autism Speaks organization.
It strikes me, though, that today's children with autism will soon be tomorrow's adults with autism. Some of those adults with autism will be verbal and articulate - though still autistic. Their parents may still be on the board in ten or fifteen years, passionately working for, in the name of, and around their own grown children.
Is it really possible that those parents who are most involved with Autism Speaks really can't imagine a place at the table for their own children? Is it really their plan to ensure that their children are permanently powerless relative to their own cause and needs? Surely, that can't be the case.
You offered lots of food for thought, Lisa Jo.
Of course, my head was spinning from all the scenarios you placed on the table. Whew!
Yet, there is a lot to be said of the “situation” at hand.
What will happen when our children are all grown up? Who will represent them?
I often hear, “Autism Speaks doesn’t speak for me.” This statement always leaves me wondering one thing… who do they speak for?
This is definitely an issue that folks need to give serious thought to today and not put it off for tomorrow.
Adonya
Adonya Wong
Author | Autism Blogger | Nonprofit Founder
There are nonverbal autistics who can sign, typeor use pecs. But many still claim even they aren’t autistic enough. Autism speaks appears to publicly be pro cure, and pro biomed. intervention while putting their $$ into genetics & support. However, until they talk their walk, they don’t speak for my boy. Even if so called ‘higher functioning’ autistics are different from my son, they give me insight into him from their experiences that are similar. Additionally, there are those with ‘hf’ autism that are pro-cure. It’d do nothing but benefit them to have an autistic on their team. However, the bring in their dollars by publicly demonizing autism. Having someone on their team might cause the uneducated to be skeptical…,
Um, missed some spaces in there and that should be they make their
I still don’t get why every one has to keep up with what’s going on with the Wrights. Regardless of who has an Org., how much they generate what; it is their Org. What I have seen within various sites from those who’d like to be part of that Autism Speaks Org, are those who represent a negative opinion of that Org. One has to ask, what can you bring to it that will benefit their cause(s)? If the attempt is for any other reason, then they’re not there for that Org. Of course if one is not the social wonders as the Wright’s are, you’re not going to generate what they do. No one until the Wright’s has generated such a thing. What I see is people wanting to dictate what they do, what they research, who they have on their boards. Why? If you don’t want to support them, send your donation else where. Autism Speaks hasn’t gotten any of my donations and I don’t always agree with what they say however I have no right to tell them how they should run their Org. or who they employ.
And I would bet you, the only people who really pay attention to Autism Speaks and what they do, is us parents and adults with ASD, and other social wonders of the world who is donating to Autism Speaks. I’d bet the general public doesn’t much know much about them other than seeing ads here and there, but does it even sink in to those people with typical kids or no kids at all?? Autism Speaks makes for a great topic for ‘us’, but it doesn’t for any one else.
It is incredible to me that there are such stingy parents, mostly NTs, out there who really think they can violate Title III of the Americans With Disabilities Act as it is applied to Autism Speaks.
Clearly, excluding people with autism — all people with autism whether HFA or LFA — from fully and equally participating in all aspects of Autism Speaks is an unlawful discrimination violation of Title III of the ADA, 42 U.S.C. Sec. 12101-12102, 12181-12188, 12201-12203, and federal regulations thereunder at 28 C.F.R. pt 36.
In Florida, such a ADA violation further constituted per se negligence, and I for one, would not hesitate to sue anyone involved in an organization such as Autism Speaks who excluded me as an adult with a lot to say — J.D./M.B.A.
If I can vote in a Presidential election, I believe I should have the right to fully and equally participate in Autism Speaks. Anything else is no different than the discrimination of keeping females out of the Boy Scouts, all-male colleges, all-male Country Clubs, and all-male professional licenses.
Are there any medical doctors with autism? Perhaps these parents think they should be excluded, too? I’m sure, especially those who might be against a “cure.”
Perhaps Autism Speaks needs a U.S. DOJ Civil Rights Enforcement action if it cannot include people with autism, yet give special rpeferences to the NT parents without.
CORR: “special rpeferences” = special preferences
I would ask the question:
Is Autism Speaks goal to serve the interests of the autism community? Or just some people’s interests?
Sandy, you say: “I still don’t get why every one has to keep up with what’s going on with the Wrights. Regardless of who has an Org., how much they generate what; it is their Org.”
I can understand why it seems like I may be beating a dead horse on this issue. But I really do think it’s important.
Here’s why:
Autism Speaks isn’t just a big foundation. It has become “the voice of autism” in places where policy is made. They are the representatives of autism to the NIH. They’ve represented autism at the UN. They have consumed several major funding organizations. Their PR has effectively made them THE autism charity of choice for major stars, athletes, and other potential donors.
As a result, AS essentially directs medical research on autism in the US – and even, to some degree, abroad. Their agenda relative to family life, education, insurance and other subjects is seen by the larger public as representative of the “autism community.” Today, it is extremely difficult to take action relative to autism on any significant scale without either competing with or being funded by Autism Speaks.
So it’s no longer just keeping up with the Wrights. It’s about having a legitimate voice of power in the larger world of research, funding, and political action as it relates to autism.
Lisa (autism guide)
Dear Lisa Jo,
I agree 100% to you.
I am secretary of Brazilian Association for Action for People with Autism Rights (the acronym ABRAÇA means “HUG” in Portuguese). After all, I am father of Gabriel, an inteligent and handsome autistic teen.
Abraça’s boards have two persons with Asperger’s autism and other one who suspect he is aspie, too – but he is undiagnosed.
We believe people with autism has the right to speak by they own – and we hope they can do that.
So, I think it is very sad a great organization, that may mobilizate U.N. to create an international day for autism think autistic people cannot talk by themselves.
I hope that will be different in the future.
Argemiro Garcia
Brazil
We do not forget people with disabilities organizations usually say: “Nothing about us, without us”.
It’s important to note that if there’s such a thing as “not autistic enough” (when referring to a person with an autism diagnosis), then the whole idea of an “autism epidemic” is effectively null and void. If the number of autistics who are “not autistic enough” is subtracted from the total number of autistics in the USA, the “numbers” these groups rely on will plummet. So Autism Speaks and others who believe in an “epidemic” of autism need to decide if they think all autism diagnoses are created equal. If not, they need to recalculate their numbers and stop talking about epidemics.
Autism Speaks is an out of control pet project of a desperate grandparent with money who was able to grab more money from well placed friends and snowball it into a visionless cry for help and attention. The organization has swallowed up other agencies which had real purpose and step on the toes of others with their big expenses shoes.
I would like to commend Autism Speaks for the fine work it has done raising awareness about autism disorders and generating research funding which hopefully will ultimately result in cures for these disorders that impair and restrict the lives of so many. As the parent of a severely autistic 12 year old who can not understand this discussion or communicate on the level of this discussion I speak on his behalf and I praise Autism Speaks for their fine work.
Autism Speaks, like any organization, should include people on its board who support the goals of the organization. That would not include anti-cure, anti-treatment people autistic or not.
But it certainly should include a high functioning autistic person whose goals are consistent with the organization’s goals. Jonathan Mitchell, autism’s gadfly, I believe would be an excellent choice. So too would Jason Oldford, a person with Aspergers who served on the Autism Societ New Brunswick Board for several years and who made representation to the Canadian Senate Committee which examined autism treatment funding.
Those autistic persons, who oppose cures and treatment, and parents and carers like yourself who share the anti-cure beliefs, should form another organization and raise funds to promote an anti-cure agenda.
Harold – I appreciate your comment. But – as I said in my blog – I really don’t think it’s fair to say that Autism Speaks is a “cure autism” organization with no other agenda.
They are among the most active organizations out there relative to funding community programs, providing resources to schools and teachers, promoting early diagnosis, and so forth. And because of their high profile, they’re assumed by many to be “the” voice of autism on all these issues.
If they were simply funding research related to curing autism, I’d agree with the “no neurodiversity” idea. But they’re not.
BTW, I’m really not sure why you feel I’m in the “anti-cure” camp. In fact, as with most issues, I am supportive of individual choice on this point. What concerns me, however, is that we don’t really understand, yet, what a “cure” would look like. No, I’m not in favor of “curing” people out of their unique perspectives on the world. But yes, of course I’m in favor of curing sensory dysfunction, social anxiety, speech delays, and other painful symptoms of autism!
I suspect that, at bottom, we (you and I, as individuals) may agree on the basics, and disagree on semantics.
Lisa (autism guide)
Lisa
I don’t know ANY organization that includes on its board of directors persons who are hostile to the organization’s goals.
The fact that Autism Speaks may have multiple goals does not detract from the fact that one of its primary goals is to generate research seeking a cure for autism.
Neurodiversity advocates simply do not share that fundamental Autism Speaks goal. And they are quite capable of getting equal air time for their views on national and international media outlets like CNN, CBC and even the New Yorker Magazine.
Why not invite autistic persons who goals, including finding cures and treatments for autism, are consistent with Autism Speaks?
As for my reading of your blog, which I do often, I generally find it to be pro-neurodiversity, and I thought anti-cure.
You are the judge of your views though. Do you, in principle, agree that research for cures and treatments for autism disorders should continue?
Harold – my point is not that Autism Speaks should recruit people who disagree with their basic philosophy. my point is that Autism Speaks should recruit people with autism. I can’t really speak to whether those people serve directly on the board, as advisors, or in another related capacity, because I don’t have a full understanding of the organization’s structure.
As regards my own perspective, here’s what I said in my last comment, and I reiterate here: No, I’m not in favor of “curing” people out of their unique perspectives on the world. But yes, of course I’m in favor of treating and/or curing sensory dysfunction, social anxiety, speech delays, and other painful symptoms of autism.
I don’t know whether this is your definition of “cure” or “treat” – or whether we actually disagree on a fundamental point.
Lisa (autism guide)
I don’t know wh
Harold – my point is not that Autism Speaks should recruit people who disagree with their mission! rather, my point is that they should recruit people with autism to take an active role in their organization. on this point, we obviously agree.
As regards my own stand “treatment and cure,” I said before and will say again:
No, I’m not in favor of “curing” people out of their unique perspectives on the world. But yes, of course I’m in favor of treating and/or curing sensory dysfunction, social anxiety, speech delays, and other painful symptoms of autism.
Not sure whether that’s your perspective as well, but am guessing that it is.
Lisa (autism guide)
I agree that AS would benefit from more input and participation from autistic self-advocates. There are many issues, especially regarding employment, housing, and safety where strong common ground exists between parent and self-advocates.
As a donor, I’ve personally advocated outreach by AS over the years. The sense I’ve gotten from them is that AS has been somewhat mystified by the hostility against them and frustrated in their ability to reach out. To whom? What groups? The ball shouldn’t be totally in AS court on this one. I think your framing of the issue is a little off. I think it’s a shortcoming of both AS and the self-advocacy community.
I’d suggest that if there’s any individual or group in the self-advocacy community who are willing to work together with AS on issues (and there are plenty of them) as well as recognize that perfect ourcomes rarely happen, compromise does, they should make that willingness known to AS. Again, as a donor, I’m not aware of AS saying “no” to anyone in the self-advocacy community who wants to get involved and work with them. If they have, I’d sure like to know about it.
Recall that AS (and CAN) were historically parent created and led. Those original leaders have older kids now. As a result, adolescent and adult issues have been getting increasingly prioritized (for example, the creation of Family Services Grants). Recall too tha, prior to AS, advocacy was largely too diffuse to be effective in any sort of scale. In my view, ASA’s capter led (too many!) organizational structure has also held back effective large scale advocacy. I think AS does have a much better model. That doesn’t mean it’s perfect. It needs to be inflexible and a bit less “corporate” in my view.
I think AS can, should, and will evolve to do a better job including self advocate voices, if people in that community and AS are willing to work together on the issues where there are common goals exist and leave some issues, where there’s intractable fundamental disagreement, at the door.
Oops. Too many typos! The AS model needs to be MORE flexible!
Hi Lisa in all this discussion I wonder why those so curious as to why there are no board members with autism at AS, they have not done the obvious, either contact Autism Speaks by email or phone them and query as to why there are no board members. With the exception of Janet Bain (AKA jypsy) who says she was rebuffed via email but apparently did not try to phone them and Mike Stanton who says he is going to take my suggestion and ask them, no one else has considered doing the obvious and asking them for their side of the story. I wish they had given Jypsy an answer via email, but I know when I have asked them about autism related matters they were helpful to me on both occasions. Lisa, I don’t think you should post on this matter any further until you have contacted them yourself and asked them for an explaination.
Jonathan, you’re right. I will do just that, and post when and if I get a response. Thank you.
Lisa (autism guide)
I for one would be happy to relay Autism Speaks’ response to my queries, but I’ve never received a response. Perhaps you have to be a parent?
I’ve left a message with my “About.com” credential and number with the media department at Autism Speaks. Nothing so far. I’ve also sent emails to a couple of contacts who are better positioned than I am to ask questions directly. However… I am not holding my breath!
Lisa (autism guide)
As the parent of an autistic child, the only time I’ve ever heard from AS was to ask me to donate time and/or money. I have no problem donating, but we parents need help for our kids, now. Research is great, but we’re working extra jobs to pay for therapy that insurance and schools can’t or won’t supply. Our kids are in a big black hole due to this diagnosis and all I get from AS is a request for another donation. (And when I did volunteer a good amount of time? Not so much as a ‘thanks.’) I’m all for big organizations gaining public awareness for autism, but there needs to be some accountability for helping those affected, particularly when the amount donated yearly is so high. Then again, I’ve heard that salaries and rent and other expenses are inordinately high as well. My money goes elsewhere for now.
Also, having a ‘high functioning’ child is still autism. If you have a ‘milder’ form of cancer, is it not still cancer? If you have arthritis that only bothers you when it’s cold, it’s still arthritis. Autism is autism. And speech doesn’t necessarily mean communication.
nope, not a parent I am a person with mild autism spectrum disorder, so i don’t think whether you are a parent or a person with autism is relevant. I think it takes more than half a day to get a response, so maybe lisa could wait a little longer before holding her breath.
Anyone read Autism Speaks Mission lately? If one agree’s with them, send a nice letter asking to help their Org. One of their Missions is cure/ prevention, I also personally think their focus is more on children although that state “all” in there some where. The Wright’s are a Wonder, and they do many things. I doubt many of us could gain entrance to the Wonderous of which they get donations from, they’d just show me the door once they seen my outfit and the dirty hand print.
Instead of approaching it in this manner, support them or don’t. One has to agree with their Mission in order to functionally be an asset to their Org and I cant say one way or another if having adults with ASD would make any difference to what their Mission is and if one is out to change that Mission, forget it. It’s never gonna happen this way!
There’s very little that I do agree with when it comes to Autism Speaks, however unlike any Org. before them, they alone have put the word autism on the map and on that TV. This happened because they have the bucks and the motivation (grandchild). There’s many other Orgs. out there that I don’t agree with as well, but none in my book can compare to the coverage Autism Speaks has given autism.
Number 6
M K D-P are you the same person as YB?
Great Post Lisa Jo,
I never realized that these differing opinions on a cure were so strong. It is difficult to decide who accurately represents “the autistic” since it is such an individualized disorder. Great food for thought though.
I also wanted to drop you a comment because I am trying to raise money for the Autism Action Partnership this Christmas.
Merry Christmas and keep up the good posts,
Will
http://shop.borsheims.com
A small update: just heard back from an Autism Speaks rep who received my phone message. I relayed my question, and she tells me I’ll hear back from a quotable person.
FYI, I asked whether Autism Speaks does, in fact, involve anyone with an ASD diagnosis on the board or in any significant advisory capacity; if they do who those people are; and if they don’t, why they don’t.
When I get a quotable response, I’ll put in in the blog!
Lisa (autism guide)
Why should we ‘have to’ email them when equivilant organisations endevour to put such information (respecting confidentiality of course) directly into the public domain?
They do it here and not just for autism organisations. Where has this basic information been published by them?
Why should we have to chase them up over something that is so obvious and basic?
In my attempts to get information from Autism Speaks, I identified myself as an individual w/ASD, a professional in the field, and current graduate student in the field of special education (all true). I also expressed interest in possibly getting involved with their activities in this geographic area. I’m not sure how long a person is expected to wait for a reply to such a query, but after six months I tried again. Then I tried a couple of real-live-on-paper-letters. I’ve never received a response.
And no, Jonathon, I didn’t try to phone them. Speech has always been rather problematic for me, and without visual observation of a speaker my processing delays make it virtually impossible for me to understand what they say. (Am I just too autistic to be anything more than a number to them if I can’t communicate in their apparently-preferred manner?)
I don’t want to get involved in politics or take over their organization; I’m far more interested in my own studies and work. I really don’t care if they want to pursue a cure (as long as they don’t try to shove it down my throat), and I’ve never claimed to speak for anyone but myself. But Autism Speaks–including many members who are young enough to be my own children–have decided that simply by virtue of being parents they are somehow entitled to speak for me, to make decisions for me, and that I can have no input. My attempts to communicate with them, to work with them, have been ignored. From what I’ve heard, my experience is not uncommon.
Telling us we should try to contact Autism Speaks, or try to work with Autism Speaks, doesn’t address the actual problem–as far as we can tell, they don’t want us.
It’s now Friday, and I have yet to hear back from someone willing to talk with me “on the record.” As I mentioned, I did call; spoke with a media person, and was told I’d hear back. Not quite sure what’ up with that.. will try again next week, but this time definitely NOT holding my breath or I’ll likely turn blue LOL!
Lisa
The 1 in 150 is useful to Mr. Wright and his rich friends. They can already provide their children and grandchildren with a lifetime of support. What they want is what money cannot buy — a cure. They use our kids to generate the numbers that get them the money. They do not care what happens to our children when they are grown; proof positive of that is their link to the execrable book by the “normal” brother of an autistic, who plays the world’s smallest violin about his own “trauma” at growing up the sibling of an autistic. This is typical NYT-times fodder, and it’s not surprising why THEY promote it. They want to kill off all of the autistic kids who are not “cured.” That’s why they love the brother’s (and father’s) description of the autistic as a “burden.” Mr. Wright’s grandson will be safe from this, as he will be privately provided for. Our kids, thought of as a 1 in 150 “epidemic” will be exterminated. As for any claims that Autism Speaks does diddly for adult services, note the huge amount of money that goes into research (admittedly useful someday) and, apparently, into overhead, and then compare with the paltry amount committed to services that most autistics (the ones whose parents are not business moguls) will actually need. I say that if Mr. Wright wants to demonize my son to get money to buy a cure for his grandson, he can go where the sun never shines.
I just want my autistic kid to be able to speak to me, read books make friends and if that is only possible by way of a cure then it must be found!