(Updated: August 7, 2012 at 1:19 PM CT)
A leading national advocacy group is calling for a summit this fall in an effort to mitigate divisiveness within the autism community.
The Autism Society wants to bring together all of the major autism organizations to establish a series of joint goals.
“The infighting that a lot of times characterizes the autism community needs to stop,” said Scott Badesch, president of the Autism Society. “Until we come together, we’re not going to be able to move the needle on enhancing autism services.”
Tension has been brewing for years with parents and even professionals at odds over everything from possible causes of the developmental disorder to whether precious dollars should be spent on research or services for those on the spectrum.
As a result, Badesch said he sees many other interest groups getting a stronger reception locally and in Congress, citing elderly Americans and the gay and lesbian community as examples. By working together with a united front, Badesch said he hopes autism advocates can be more productive.
The Autism Society is calling for leaders of national organizations to come together in the same way that many companies, for example, work together through industry trade groups. While each organization would retain its own agenda and perspective, the community could work collectively to achieve specific objectives.
Badesch’s group is reaching out to other stakeholders at present to gauge interest. He said the initial response has been positive but declined to offer specifics.
In a statement Tuesday, an Autism Speaks spokesman said the organization “looks forward to joining this conversation about how we can all work to improve the lives of people with autism and their families.”
Inquiries from Disability Scoop to three other national groups advocating for individuals with autism about the proposed summit did not yield any immediate response.
With the election coming this fall, those initiating the talks say they are hoping to bring a group together before the new Congress gets to work next year.
It is absolutely astounding that a few loud individuals which to make out like individuals with ASD are an ethnic minority. Using language such as: “audies” or “spectrumites.” Are you really asking this nation and the world to believe that individuals with autism are some how more deserving of a distinct ethnic minority status than any other individual with a disability. You have a disability. It does not have you. You are no more bound or identified by the autism than a child or adult in a wheel chair is bound or identified by the wheel chair.
This is absolutely insane. If an individual needs a heart transplant, they are put on a list. They ask to be put on the list because the heart transplant will save their lives.
If an effective treatment for autism can be found, we should put as much effort into finding it as is economically feasible without depriving other individuals with disabilities of the services and supports they need.
This sentiment that autism is some how more deserving of special attention than other disabilities is selfish and absurd!
Re: autistic identity as “insane”
Perhaps, but probably less insane than applying electric shocks, administering bleach enemas, or the parent who suffocated “autism” as she believed it incarnate in her son. (So…the son died. She killed him. Autism is still alive and well, thanks for asking.)
Disability cultures are nothing terribly new. Deaf people have established a pretty strong culture, which they developed based largely on their shared difficulties. Autistic culture is somewhat less developed but I think it’s coming along quite well.
Since you brought up heart transplants, I don’t see you over on the DisScoop thread discussing how an autistic was apparently* denied the opportunity for a heart transplant based on his autistic nature. Care to go over there and render an opinion?
*The article notes that it is a “claim”. I’d love for the problem to be a simple communication breakdown or policy misstep. Those can easily be fixed. Outright eliminationism is more difficult.
Interesting to see auties wishing to remain auties as “selfish”. Wanting to reach into someone else’s head and rewrite their thought processes to make them more like oneself seems pretty grabby to me, but then I’m autistic.
No one is demanding anything more or less than any other minority group. Autistics are a sub-group within a larger Disabled sub-group. As such, we are a minority. No one has said that we deserve any more than any other Disabled group. Deaf folk have a collective Disability identity. Is it really so disterbing/surprizing that Autistics might as well? I do not consider myself, or any other Autistic, to be worth any more or less than any other human.
There are many many Autistics who identify as such. I have met hundreds. There are many Wheelchair users who identify with the chair. How can we not identify with something which affects our lives so directly and so constantly? Who are you to tell me or anyone else how to identify? I am the one with the Autism diagnosis – I get to choose how to self-identify. I would never want to userp your right to any combination of identities you no doubt hold. This fact of Autistic self/group identity may be inconvienient and seem wrong to you, but let me assure you that it is out there and there aren’t just a “…few loud individuals…” Many of us also strongly dislike so-called ‘person first language’ too.
We are, however, worthy of seats at the table when our needs are being discussed. This would be a given were any other Disability group being discussed. Who better to discuss the needs of any group then members OF said group?
Sure, we Autistics are often rude/blunt. It goes along with having a Social Disability and thus needs to be accomedated inside the minds of others.
Heart transplants and Autism are not analygous conditions. Deafness would be a better analogy. And util one can choose weather or not to be cured, what happens? We sit around service-less and let others decide everything for us? Many of the existant policies harm us or dehumanize us farther. Give us seats at the table – Nothing About Us Without Us. No matter how well you think you understand autism, if you do not have it, you can not really understand it. All you can do is project fears and dispair onto a condition you do not own.
Great! So the forums two nay sayers go on the attack again. Times are changing and it is time these dinosaurs change too or risk becoming irrelevant. Not to mention the harm they are doing to the cause.
By the way, “Nothing for us, without us.” does not mean what you think it means. And no one is suggesting that individuals with autism were going to be excluded. But you are not going to control the agenda, nor should you.
Who should/does get to control the agenda, Glen S.?
Also, what is the agenda?
OK, after taking hours to process Glen S.’s last response, I think I may’ve worked out something vital. I’ve been trying to understand the hostility encountered by myself and other outspoken Autistics here (and other places too). There is an assumed over-arching agenda; one that I, and others perceived to be like me, are trying somehow to control? A meta-agenda and maybe yet another related agenda for this as-yet-unhappened upcomming summit?
OK, see…. this, right here, is why I have a autism diagnosis. I’m only now aware that there even IS an agenda. I don’t want to control anything. I just want a there to be an Autistic super-majority every time there is a summit to participate in the /discusstion/ of the make-up of an agenda. I frankly have no idea of how to control any agenda(s). Part of being autistic is not knowing how to play the kind of game I think I may be being accused of playing.
Autism is a social disability. I have it as a diagnosis because, amung things, I lack the ability to play social games. To play, you have to know the rules and be able to read the cues. I can’t do the latter. And figuring out the rules for each seperate social interaction takes so much energy output for such a small return (usually I cant figure them out) that it’s frankly not worth it. My agendas are all tiny and extreamely personalized – getting home so I can be alone in my apartment with the dog…..
So, if this Glen S person is to be believed: autistic self-advocacy is outmoded, improper, and must be overcome in order to obtain peace among autism organizations. Once the self-advocates comply, they can have minority representation during inter-organization conferences so that they may hear firsthand what they will be expected to do.
That seems a rather one-sided perspective. I find xyr concern for “the cause” particularly interesting in light of xyr disdain for those whose cause it happens to be. Thanks for your time, all.
“This sentiment that autism is some how more deserving of special attention than other disabilities is selfish and absurd!”
That’s a disinbgenuous twisting of the sentiment that calling someone disabled when they aren’t is a kick in the face of both the disabled and autistics
” But you are not going to control the agenda, nor should you.”
Pardon me but are you saying that Autistics should not control their own destiny and you in fact want to patronise us with comments that this is how it should be?
It’s obvious that you are afraid of losing your overwhelming influence and don’t care about autistics beyond telling them to shut up if they ask for a voice. How dare you be so self centred.
Intriguing development of conversations here. Autism is a neurologically based syndrome. It is not a disease to be cured. There is always room for improvement–in everyone’s life–and the need for establishing supports and therapies which afford the OPPORTUNITY for improvement is crucial. Many perceive a parallel between the evolution of a deaf community to the growing interactions of an autism community. There is some value to that but keep in mind there are controversial ‘strands’ within the deaf and other differently abled groups as well, and I have met deaf persons who believe that deaf persons should avoid all other contacts and “keep pure.” The deaf community has had over 100 years to evolve. So clarity of purpose is very important here.
Dialog is so important. As an Aspie adult, 58 YO, I value straight out language – “shoot from the hip.” I do not understand manipulations or hidden intents and do not promulgate such agendas. So any consortium has to be clear about this and understand that saying something directly is NOT disrespect, but honesty.It is not rudeness (unless an attitude is CLEARLY provided/enunciated) but for me a real act of kindness to be direct with responses and objectives.
As an Aspie with 2 Aspie sons, and who teaches about autism at the college level using current science (and the Arts), I honor and encourage (gentle) dialog.
And above it says ‘refrain from…using abusive language.’ having a ‘voice’ is so important. Building community requires having a voice. Knowing how to use one’s voice? Keep learning…
ShakespearesCat: There are multiple neurological disorders which are treatable. Autism can be one of them with more research. Second, having a voice doesn’t mean other stakeholders (especially tax payers and donors) get excluded or diminished in the process.
Michael Reeves: Individuals with autism don’t control their destiny, and as long as the community is seeking $ $ from others you aren’t going to do so. Second, to think that ten or fifteen individuals on a single forum speak for every family dealing with autism is absurd.
KA101: No, all advocacy that asserts that society should be writing blank checks or expecting to have the bulk of the say on how these blank checks are used does NOT have practical, successful examples in the real world. In other words, your form of bully advocacy will result in resentment, discord, and failure to gain inroads for any individuals with disability.
Mooncalf: This is a reason public, anonymous public forums are so dangerous. If you can’t see the greater agenda of many who post on this or other forums; you should avoid coming to their defense.