Lately, there has been some controversy concerning the fact that not a single person on the autism spectrum is on the board of autism speaks or has no position of power there. Ordinarily I would agree that this is a legitimate beef. It would be good if someone on the spectrum could add some input and I feel at least some persons on the spectrum (myself included at the risk of sounding arrogant) who are in favor of AS's stated goal of curing and preventing autism might make good candidates for board members. Besides myself, some possible choices would be this lady who calls herself Droopy, who is nonverbal, but is very articulate using a keyboard. Another good possible choice would be Tom Mckean. Also Marty Murphy is another possible candidate.
However Lisa Jo Rudy of the autism about blog seems to have some other persons in mind. She suggests Temple Grandin, Stephen Shore, Ari Neeman, John Michael Carley and Michelle Dawson. Not a single one of these five persons is in favor of curing autism yet for some reason that is beyond my comprehension Rudy seems to feel that these five should be considered for an organization who is in favor of curation and prevention when all of them have publicly stated they are adamantly opposed to this notion. Two of the five have asperger's rather than autism and would not even have been diagnosable as autistic during their childhood based on the diagnostic criteria that was extant during that time. Shore already serves on the IACC for some strange reason I can't fathom when he is against a cure for autism yet the IACC was created out of the combating autism act which states curation and prevention are goals.
Michelle Dawson, works in the laboratory of Laurent Mottron which receives funding from autism speaks in spite of the fact that in some of her writings she makes it quite plain how much she despises this organization, yet she continues to work in this lab and has not resigned in protest.
Should members of the Ku Klux Klan be appointed to serve as board members of the NAACP. How about if the DNC just to be fair puts five republicans on their board of directors, after all the fact that they are all democrats must be unfair to the republicans.
It seems to me that most if not all of the people who complain about no autistics on the board of autism speaks are those with a neurodiversity agenda who are opposed to a cure and prevention and seem concerned that research funded by AS will someday lead to selective abortions of autistic fetuses.
Could these people have an ulterior motive for serving on this board. It seems there is a pattern among at least some persons in the ND movement to attempt to hijack the capital of others who have worked hard to earn it. Bob Wright worked very hard to acquire the capital for AS so his grandson might have a slim chance of a decent life that the ND people want to seem to deny his grandson in the unlikely event a cure or at least some other treatment from AS's scientific research were found in our lifetime. Ditto for the persons who donated money to AS and organized the walks and walked so that their children and relatives could have a chance of a better life but have been called eugenecists by people who seem to think they should serve on their board. Michelle Dawson has advocated that scientists who do not agree with the agenda of AS apply for research grants there. Ari Neeman and others in the ASAN have urged persons to request things from the IACC which grew out of the combating autism act a law which they made very plain that they did not like and which they attempted to prevent congress from passing. Yet they want to take advantage of this law they don't like.
It is quite possible that the ND movement just wants to take over the large capital of AS, as they are a movement whose numbers are too small to raise sufficient capital to start their own organization and fund raising efforts.
When I suggested that as a person on the spectrum who wants a cure for autism that I should be on the board and that if i were running the show the funding the lauren mottron lab receives from AS would be discontinued since they employ Michelle Dawson this nasty neurodiversity hatemonger who calls themselves alyric who is apparently a pal of Dawson's berated me saying that what i was doing was malicious spite and made the nasty and abusive personal attack that my minder did not teach me any manners.
I think it is likely that an AS board member who agreed with the cure philosophy who was autistic would be called a token autistic and a house autistic and would result in the ND anticure movement starting yet another internet war on top of all the others they seem to have a proclivity to start.
Ms. Rudy's suggestions for board members clearly baffle me and I hope that if there is an AS board member on the spectrum they will not be drawn from the ND crowd.
Subscribe to:
Post Comments (Atom)
17 comments:
Hi, Jonathan!
I have to say, to my embarrassment, that I listed those names simply to make it clear to an earlier poster (NOT you!) that there really are adults on the spectrum who are coherent, intelligent, competent, and over the age of twenty. It was one of those "so there!" moments - not a carefully reasoned selection of individuals.
That said, while a couple of those people are active neurodiversity activists (which might mean they'd be constantly at war with the rest of the board, though I don't know for sure), certainly you can't accuse Stephen Shore or Temple Grandin of being in that camp. They're not political in their work - which might make them good choices.
As regards the question of whether Autism Speaks should include someone with autism on their board AT ALL, I am appalled that they don't. Not because every group should have a gadfly LOL - but because they have effectively become THE national and international financial and power broker when it comes to autism.
The reason for this is simple: they have effectively gobbled up an enormous percentage of the money available by gobbling up many of those small groups that had similar or even competing agendas. That means that for people WITH autism, it's become almost impossible to go out and find individuals of wealth who care about the issue.
This seems pretty scary to me. It's like gobbling up all the money and influence connected with the deaf community, but not allowing anyone who's hard of hearing to be involved with its dispersement. Who would know better where its needed?
All the best,
Lisa (autism guide)
Hi Lisa thanks for your post. You are incorrect about Ari Neeman being over the age of 20. He is barely 20, someone who basically has had no life experience at all which to me would be a reason to disqualify him for serving on the board regardless of his views. Also, he is someone who has implied that AS is responsible for the murder of autistics and i dont thinks AS would want someone like that on their board. Stephen Shore is a member of the IACC and indeed has his own personal agenda for autism which is not in accordance with the policies of autism speaks. The problem is that not all persons with autism are coherent and intelligent and many of those do not have the experience of persons who are not like them, so the analogy with the hearing impaired is not a terribly good one.
I agree though that it would be good if they could include some autistic members on the board and I listed some possible candidates in my post. However, AS does have a certain point of view and autistics who do not share their point of view should not be welcome and I still stand by that.
You say "AS does have a certain point of view and autistics who do not share their point of view should not be welcome and I still stand by that."
Change "should" to "will" and I agree 100%.
Lisa
Good points.
Jonathan should be on the board - he is an articulate spokesperson, engaged on the relevant issues, always well researched, and thoroughly informed.
Isn't Stephen on a couple different autism organizations board of directors? Yes, Stephen is a great guy, but,
It can't just be the same people on the board of directors, because, the message is less then a handful of autistics amount to anything.
I think it's time to acknowledge that their are other spectrumers besides Ari, Stephen, Micheal J., Temple, Liane and look to other spectrumers who are in every community who might not be published or on various autism boards of directors.
I think it is more then time to open up the organizations to autistics, but lets hear from more of the them, instead of just the same handful over and over again.
Hi anonymous, I agree with you completely. We should hear from autistics who have less noteriety than the published ones and the others who are high profile.
Unfortunately, the powers that be want to put a positive spin on autism so only certain individuals are heard from. The problems that many of us suffer from as adults are something a lot of people don't want to talk about. I am not sure if autism speaks is like that or not, but your point is well taken.
I would put Thomas McKean on that board. I don't think Autism Speaks will put any autistic on the board and for reasons you have outlined Jonathan.
While Tom is pro-cure, he is also pro-inclusion, pro-employment, pro-services and pro-education. At least with Tom on the board, AS could claim they support integration of some autistics which would be a step forward. They are about the only "disorder/syndrome" charity around without representatives from the people they claim to support.
Unless MM apologizes for her offensive screed on why autistic people are worse than death, I don't think she is a good choice from the pro-cure side.
CS
Also, let me add a couple of non-autistic people to nominate to the board:
1. Senator Tom Harkin
2. Any member of TASH's board
CS
Well, CS, in the days before autism speaks we had CAN, cure autism now before they were gobbled up by autism speaks. I don't know what autism speaks' bylaws are, but CAN's bylaws involved the fact they were the organization which was solely set up for the purpose of funding medical research with the intent of finding a cure for autism and preventing it. They violated their own bylaws when they started funding some of ivar lovaas' work as well as people who collobarated with him.
The same was basically true of CAN's east coast counterpart, NAAR before they were gobbled up by AS in the huge coporate takeover. So really these organizations were never about, inclusion, services, etc. but about raising capital to fund research that would lead to curing and preventing autism.
Unfortunately, due to pressure from parents, AS has branched out to fund education, loby for insurance, etc. But an organization that tries to do too much is like too many cooks spoiling the broth, not enough gets done. I wish AS would just stick to funding medical research and not doing other things and let other organizations do things with inclusion, services, etc.
"an organization that tries to do too much is like too many cooks spoiling the broth, not enough gets done."
True.
What would you do if you were in charge of education? What would be some of your goals?
CS
You're right -- let Autism Speaks do what it does best -- spreading hate and fear, spending inordinate amounts of money on b.s. funding for the ellusive cure, and throwing huge parties and patting themselves on the back. How silly of them to even consider education or any other topic that might matter to autistics.
d.m.
hi, education is not really my forte, and not really relevant to the topic of the post. However, I guess I would abolish the IDEA, try to put as much emphasis on vocational training as possible and try to encourage the use of home schooling for autistic and other developmentally disabled children and try to form social groups for them, similar to AGUA (adult gathering united autistics) which we have as adults which I along with Jerry Newport and some other people formed in Los Angeles back in the early 1990s. Abusive schools such as the Higachi school would not be tolerated. Other than that I really have no other suggestions, not really my forte as I said before.
It seems to me if anyone spreads hate and fear it is the ND movement with their name calling, cyberbullying, claiming those who want to cure autism are eugenecists and that research will only result in prenatal abortions, etc.
But it is pretty typical of them to throw stones from houses made of extremely fragile glass, so your post seems to be par for the course, D.M., whoever you are.
We should hear from autistics who have less noteriety than the published ones and the others who are high profile.
Unfortunately, the powers that be want to put a positive spin on autism so only certain individuals are heard from. The problems that many of us suffer from as adults are something a lot of people don't want to talk about. I am not sure if autism speaks is like that or not, but your point is well taken.
Maybe 6-7 years ago, I met you a few times in a chatroom on aol with Tum and a bobcat and you were a jmitchwithafewnumbers...
Personally, LJR's blog is old and recycled and just her siggy on something that has been written redundantly that is really never going to change.
Many charities are going to be hit hard and possibly not survive this economic crisis. The other thing too is, parents go on with their lives. At first, new to the dxes, the internet is good, but after awhile it's the same recycled stuff and more and more leave the internet and get involved in their actual community. It's not that important to go to the conference and hear Temple again. There is nothing more to be learned. And the autism hub, just turns you off and the infighting is redundant and old.
So in the end many, prolly the majority of parents leave the internet and will bring about change in the communities they live in. That is how IDEA came into being...a grassroots campaign by parents.
Because at the end of the day, when all is said and done, there is no one who can speak more for the individual with the autism dxes then the parents/family. An aspie can't do it. And a seasoned parent knows this.
So really LJR's blog writing was a waste of time. And the only people who really care, are I suppose the people who are sort of the people who don't care much for the Jerry Lewis telethon.
How many parents might you have met years ago online that have no presense online anymore because they have moved on? Maybe that is what is the saddest about LJR blogg the most, is that her child has autism in real life in a real community, and yet she chooses to be online for her autism and naming the same handful of people to represent autism?
It's old and sad and a small cyberview of autism.
Anonymous (whoever you are!) - a couple of things in response to what you've written.
On a personal note, I certainly don't live my life or raise my son online! Among other things, I homeschool my son with autism, I've started camp and drama programs for kids with autism, and I raise funds for programs that serve families with autistic members. I also work for a large number of clients besides About.com (to make ends meet!). Mostly, I'm an education and web content writer. (www.lisarudy.com)
It's also important to remember that, while many parents do move on from their initial rush to learn all there is to know about autism, there are always new parents coming on board. In addition, there are always new adults discovering that they may have AS. This means that they have never been exposed to Temple, or to Autism Speaks, or to the many well-known theories regarding autism's causes and treatments.
While I support the idea that we should live in the real world, I also think that these conversations will and should continue. The internet is just one way to connect.
Lisa (www.autism.about.com)
On a personal note, I certainly don't live my life or raise my son online! While I support the idea that we should live in the real world, I also think that these conversations will and should continue. The internet is just one way to connect.
Your arguement is old and holds no water anymore!
The organization is called "autism speaks" not "aspergers speaks" not "ASD speaks" or "PDD Speaks", it's simply autism speaks.
You have spent so much time online, and your fellow bloggers Kristina Chew and Mike Stanton have equally....Where do you think all the people who posted on the autism speaks forum have been the since September of 2008? Do you think they are sitting around the kitchen table discussing why Ari Ne'man is not on the board of directors of ASA? Do you think the many families of autistic children really care about this online issue (More people with aspergers being on the board of directors of ASA).
Maybe the clueless haven't caught on to this rediculous topic?
When Bill Clinton ran for Presiden, James Carville was quoted on many occasion for saying....its the economy stupid.
Who cares that Ari isn't on the board of directors! I think parents are being really responsible in being concerned with the economic crisis and providing for food and clothing!
What do you think?
Gee anonymous person, you really don't like writers, do you??
I'm afraid I'm not going to apologize for earning my living as a writer (about many things, for many clients, with autism being just one).
Nor will I apologize for writing about topics that are clearly of interest and significance to quite a few people (present company excepted, I guess).
I think I've made it clear, many different times, and in many different ways, that my concern is that people with autism are represented in the largest autism-related non-profit in the world. I'm not trying to push a particular candidate, but I AM trying to suggest that a massive organization FOR people with autism should INCLUDE people with autism.
If this somehow offends you, I guess we'll have to agree to disagree.
Lisa
Post a Comment