(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.
Unfortunately, the total absence of any reference to autistic people is itself the indication of why this goal is unlikely to succeed.
It is important for our community to try to work together for the common good, and work *through* our differences, but it’s also vital that we not try to just work *around* them or refuse to tolerate dissent or disagreement. Conflicts happen for a reason, and need to be addressed.
However, we could be doing a much better job of addressing these conflicts respectfully than we have so far, and with that perspective and goal in mind, I could certainly get behind this initiative. It won’t be easy, or simple, and just “not fighting” isn’t the answer. The goal should be progress, not just peace of mind via an escape from having to listen to conflicting voices.
This is a great idea but it will be interesting to see it implemented since there are so many variations in autism and so many variations on the way everyone involved views it and the goals they make regarding it. I have 2 sons with “classic autism” and believe that the knowledge is both beneficial and detrimental. Beneficial in receiving services at school instead of discipline for misbehaving, beneficial in helping me to understand them & vice versa. Detrimental because they are genius smart and have figured out how to manipulate their way out of doing anything they don’t want to – like reading, writing, chores, being held accountable for their actions – because they have this grand”excuse”. I hope that doesn’t offend anyone, it isn’t meant to. Just meant to open the discussion that sometimes with all our good intentions, we make a situation worse than it needs to be. Another thing – verbal or not, low or high IQ – our kids are listening, they do hear what we say – to their doctors, teachers, our friends. They hear what we say! When we demand a cure, an explanation, to “fix” them, we are telling them they aren’t ok the way they are, that there is something wrong with them. We drag them to one appointment after another, try this cure or that one, talk about how our lives are so difficult because of…autism/them. I don’t know about you guys but I wouldn’t want to talk either, or behave, and you better believe I would shut down – not because I can’t feel, but because I feel so strongly that it’s overwhelmingly intense and painful. Please parents, in our quest for knowledge, lets remember that the best way to help our kids is by supporting them and making them cmfortable with who they are – our kids that we love. A good self esteem and supportive loving family go further than any cure or explanation. My apologies if anyone is offended, I know we all hurt and my intention is to help be a voice for the kids, not create more pain or division. God bless :)
I believe the entire community of people with disabilities needs to do this! 57 million people would make a powerful entity, and yet, we act more like crabs in a basket than a unified group. When it comes to addressing our elected officials, we need to work together on common goals. Reach cross-disability advocates and unite for real change!
Are you kidding? This is a fundamental issue. I’m not going to just stop caring that people don’t want to spend money helping living autistics, that they’d rather turn all of us into science experiments in order to get rid of us all without breaking any laws. I doubt the people who care more about cures and prevention than integrating real people into society will simply calm down and share either.
The Autism Society? As in the Autism Society of America? I cannot personally support them and “come together” with them, when they never answered up to listing the JRC as a “resource for families”.
I am not “fighting” with them, nor is the organization I am affiliated with. But, we are very different organizations, doing different things, and clearly with different vision. So what? Are we all supposed to be doing the same thing? When I hear someone suggest we all have to come together and do one thing, it makes me think that the suggesting person is arrogant, and is seeing other groups as “competition”. Makes me sick, to be honest.
adkyriolexy says:
“Unfortunately, the total absence of any reference to autistic people is itself the indication of why this goal is unlikely to succeed” AMEN to that!
The reason we called for this effort was not to lead it but to convene it. And despite what the comments suggest, autistic people and advocates of the autistic community must be and will be an integral part of this effort. And, I agree fully with the comment that this has to be more than just about autism. Imagine a powerful advocacy effort that 20% of the US population would be behind. Would the banking industry ever allow Government to make decisions that impact them without being part of the solution and decision? We need to change the national discussion and attention so that each person who is autistic is fully respected and that the highest level of dignity is assured for each person who is autistic. If we are honest with each other, that level of respect, dignity, and the need for supportive services is not being assured and in many cases, addressed by our nation.
As for the comment about the Autism Society’s inclusion of JRC…it is wrong. If you read our statement on our Facebook Page as well as on our website in the past, we took a strong position against the archaic treatment and actions of the JRC and have advocated against their continued use of archaic treatment efforts.
We can all disagree, but our infighting, which far too often is a characteristic of our community, needs to stop. It does no good and it certainly results in a lack of forward progress that is so very much needed.
Scott Badesch
President
Autism Society of America
The comments here directly underline the reason for this initiative. They also prove to me that I was right in circling our wagons when it comes to the autism community. I have withdrawn support from all major organizations, and instead support our local agencies who are directly involved in helping us care for our son. It was a painful decision but was necessary for our family’s and my emotional survival. The constant yelling, arguing, hate and dismissive attitudes was and is so damaging to the very people this is supposed to be about that it became too much to be involved with. This is a trend that I fear will grow, as more and more competent, caring people become disgusted with the situation and simply go away. Kudos to you, ASA, for attempting this. Good luck.
As one of the few organizations that offers treatment services and support to families to help their children with autism reach their full potential, ACT Today! (Autism Care and Treatment) wants to be part of the solution to this epidemic, not part of the problem. I would love to participate.
Nancy Alspaugh-Jackson
Executive Director, ACT Today!
The goal is laudable, but strikes me as too broad and the product of a fair bit of fuzzy thinking. Why not have private, rather than public conversations with leadership of the leading stakeholders, then announce a specific initiative…after each groups leadership has signed on to an agreed upon framework? This “public call” from the Autism Society requesting everyone to “cooperate” seems a touch self-serving to me.
With all due respect to Mr. Badesch and the Autism Society, I can’t see that organization leading a column of ants to a picnic basket. Their organizational/chapter structure is so convoluted and diffuse that it invites and promotes a fractured approach on advocacy issues. ASAN broadly making nice with Autism Speaks? Age of Autism-ers and Autism Science Foundation holding hands and singing “Kumbaya”? I’m not holding my breath
ASD issues (and the philosphical approaches to them) are a much different proposition than the examples Mr. Badesch cites, for way too many reasons to list here. His comparisons are not valid. However, I do believe that on specifically targeted issues (like safety, adult funding and services, employment, and housing), our community can and must come together to effect policy change.
I think the only way that happens is to keep it issue specific initiatives rather than broad organizational cooperation because I don’t think it gets too far beyond “Welcome to the meeting” with the latter approach. But I could be wrong, of course.
The National Autism Society is losing membership and donations are down. There was a spat with our local Los Angeles Autism Society a while back about money and they lost a legal challenge in trying to get more of our local funds (big city, big donation pool). They are trying to remain relevant when they don’t have a strong voice or platform now that such juggernauts like the offensive “Autism Speaks” folks suck funds out of the room with their sophisticated media machine.
As a previous comment referred to the “total absence of any reference to autistic people” invited or involved shows how most “support” agencies and nonprofits are more interested in keeping a happy, well-paid board of directors.
It seems that more and more “support” agencies are data-mining at their “information” sites. I’ve been objecting often about the need to first provide my name, email and other personal information before being able to “click” onto publicly available information that should be open and available to the public without all the song and dance.
This isn’t as much for “helping” the public as it’s a stab at trying to get a piece of the “Autism Speaks” pie.
AMEN! We also see this in our state, but an urban verses rural area. Rural area are void of any services other than what is provided in our schools. When we (parents) contact advocacy groups about resources in our area, the response is none, but it doesn’t stop them for asking for finanacial support. Every child, everywhere.
I don’t think we will ever reach broad accord until the APA gets out of the business of defining ASD. My son urgently needs to learn not to engage in self-injurious behaviours. I urgently need him to learn not to break my arm. This has absolutely nothing whatsoever to do with Ari Ne’men &co’s idea of ASD… furthermore, I am concerned that this sets ASD against the elderly and GBTL – what, no one with autism is queer? nmo one with autism is old? The reality is an intersection of interests.
Nice to hear of the Autism Society taking the lead on a critical issue! The new energy from younger advocates seems to be moving this group back into a leadership position.
Our non profit organization was recently forced to close the only ABA based preschool for children with autism in our area. We were unable to get funding despite being able to prove wonderful results. Funding is the biggest issue that needs to be addressed, without it, families with children on the spectrum are unable to get the proper help. This varies so much state to state and until all insurance companies are required to pay for proven therapies, nothing will change. All individuals on the autism spectrum deserve the same chance in life. As the mother of a 23 year old with Aspergers, I am very concerned about the future, what is going to happen when the “1 in 55″ become adults. Everyone needs to get on the same page and figure it out!
The call for cooperative efforts is overdue but welcome. Systemically in fighting occurs in most groups, even those cited as more unified. It should be understood as a stage that a group could move through with skilled diplomacy or falls apart into self indulgent ideologies
And the principle must apply to all people with disabilities. Today there is a monetary fight between life enhancement and “cure” (eliminate autism, down syndrome etc). That is a deep affront to most people I know with disabilities who do not want cure or extinction but rather their best possible life, their birthright.
Perhaps these factions ought to split to create separate and more coherent missions.
Perhaps, the medical/pharm/corp folks ought to split from the family and self advocacy folks for the same reason.
My own bias is for the personhood of the individual as they define it through a lifetime. It grows tiresome to sit through conferences and listen to physicians, pharmacologists, and bureaucrats define what they will do for people with autism with the big money given…..and not hear from people with autism themselves
I’ve been waiting for a national advocacy organization to have the courage to stand up and take this effort, to attempt to assist in an effort to bridge the barriers of communication and understanding that exist within the “broad autism community”. It is not something that can be done on an individual basis, for lone voices that have attempted it in the past.
I respect this effort.
R/Kate
I’ve been advocating for this for years. Am so glad to see some of the majors are finally on board. If “we” are not united as a constituency, we are divided by numbers and our politicians at both State and Federal levels cannot “hear” our votes, or see us as a strong, united, collaborative front.
I disagree with the previous post that the “absence of and reference to autistic people” is, in and of itself a reason why this goal is unlikely to succeed. Symantics. Of course, those with autism will absolutely join this cause when educated, invited and supported where needed to do so. We simply need to educate our community about this bold effort and invite all to participate.
Lastly, and at the risk of being lambasted, it is often not just organizations that are divisive, but parents themselves. There are those for whom, for example, my young adult with HFA is not autistic enough, and conversely we often overlook the voices of those who cannot speak for themselves. Recently, a MAJOR force in the global autism community applauded the new DSMV because, to paraphrase him: Those kids with Asperger’s and high functioning autism will (happily) no longer drain the system of services that they do not need.
This is a pervasive issue. I hope this bold initiative gets off the ground. It has my support, and my son’s, who is now 23 years old.
I think this is a good idea, but I wish people would start using modern day language like People First Language. Why refer to kids as autistic as some have done so in the comment section. It is the child or individual with autism – the disability comes last as it is not what defines the person. If you had cancer, how would you feel if everyone refrerred to you as the “cancerous” guy? Before we come together, we have to pay attention to constructs and how we talk about a particular group.
Bravo Sonja Luchini – you wrote : ” They are trying to remain relevant when they don’t have a strong voice or platform now that such juggernauts like the offensive “Autism Speaks” folks suck funds out of the room with their sophisticated media machine… As a previous comment referred to the “total absence of any reference to autistic people” invited or involved shows how most “support” agencies and nonprofits are more interested in keeping a happy, well-paid board of directors.” [end quote]
Sadly, this comment mirrored my first response to this article.
As to Scott Badesch’s position and commentary here, I offer this OPEN LETTER TO HIM:
Dear Sir,
I wrote to you months ago of my need (as an adult autistic who has three children on the spectrum) for supportive services that could include access to ASA’s resources for information and referral. I outlined to you (or your assigned representatives who apparently ignored my email and important requests for support and referrals) that our family is below the federal poverty guidelines, directly due to our inability to secure and maintain employment and that I was unable to contribute or join the ASA in order to utilize any web-based research or advocacy information which would only be proprietarily available to those individuals or families who had resources to PAY for them.
I also mentioned that the same lack of access to online/digital resources holds true for the Autism Society of Alabama, whom I formerly supported, even presenting as a consumer advocate for a Department of Rehabilitation Services Vocational Rehabilitation workshop, at the Autism Society of Alabama director’s request.
For this writer, an autistic individual, your parent organization and its subsidiary state affiliates, apparently have no qualm of conscience as you maintain a “NO PAY, NO PLAY” policy, with respect to needy adult autistics in the U.S.
My plea for a quality and competent response from your ‘advocacy’ organization gleaned NO RESPONSE from yourself or your *paid* representatives.
Mr. Badesch, you stated here in your comment – “We can all disagree, but our infighting, which far too often is a characteristic of our community, needs to stop. It does no good and it certainly results in a lack of forward progress that is so very much needed.”
Forward progress, indeed, is needed.
Sir, in my letter to your organization, I asked you to specifically outline what portion of your fundraising initiatives would be allocated to assist adults and transitional teens like myself and my children, who find that there is absolutely no direct agenda, proposal, program or services specifically formulated and targeted by the ASA to address our quality-of-life issues, all of which CENTER on vocational achievement and access to age-appropriate services.
Neither you personally, nor your representatives, GAVE ANY RESPONSE TO MY SPECIFIC QUERIES. You never even acknowledged receipt of my attempts to contact your organization, when I called your office to notify you of my family’s need for services.
Yet the ASA continues to fill my inbox with REQUESTS FOR DONATIONS.
I demonstrated due diligence, sir. Where is yours?
Even I, as an autistic, have a learned ability to display a bit of empathy toward your plight and likely, all of us out here in the socially functional population of autism-affected individuals, get this message stated so effectively by Ms. Luchini, here: Autism Speaks has diverted the lion’s share of funding coffers as a result of their above-referenced media mechanisms.
We also recognize that Autism Speaks’ ability to move into the void that the ASA left present for years through outmoded and ineffective services models, must now more make difficult Mr. Badesch, your goal and the central focus of your role at the ASA, to maintain funding for your employer’s non-profit corporation.
Meanwhile, we, the autistics who have the ability to self-advocate, continue to live with a dire certainty:
We are not IDEALOGUES seeking to promote our pet *theories* of how to live as autistics in this culture. We are PEDAGOGUES, living in the trenches of autism advocacy, wondering, like my Asperger’s husband and I do, how the h*ll we will get through the practicum of surviving this month on his $687 SSDI check, when neither of us can find a job to support our autistic children.
Our reality on the front lines of this issue is what causes us dissatisfaction with ASA’s exclusion from the press releases of your ‘conversation’ regarding this initiative, those autistic individuals and existent self-advocacy organizations, who are able to SPEAK for themselves.
There is also the apparent deadline-produced oversight or intentional exclusion of some of these organizations by Disability Scoop’s journalist, Diamanti.
Did Ms. Diamanti attempt to contact Ari Ne’eman for a comment? Did she mention any autism self-advocates or self-advocacy organizations in her article above?
According to her piece, she stated that “Inquiries from Disability Scoop to three other national groups advocating for individuals with autism about the proposed summit did not yield any immediate response.”
Since we are left, as usual, Mr. Badesch, with a paucity of inclusive and applicable information funneled through the PR-and-media-darling “BIG TWO” organizations’ positions, no wonder there are concerns and cries of “foul play” in the face of such present domination in the landscape of autism advocacy.
I agree wholeheartedly with the commentary of Dadvocate here:
“This “public call” from the Autism Society requesting everyone to “cooperate” seems a touch self-serving to me.”
Further, I agree that,
“ASD issues (and the philosphical approaches to them) are a much different proposition than the examples Mr. Badesch cites, for way too many reasons to list here. His comparisons are not valid. However, I do believe that on specifically targeted issues (like safety, adult funding and services, employment, and housing), our community can and must come together to effect policy change. I think the only way that happens is to keep it issue specific initiatives rather than broad organizational cooperation because I don’t think it gets too far beyond “Welcome to the meeting” with the latter approach. But I could be wrong, of course.”
No Dadvocate—you are absolutely correct.
I only hope that you, Mr. Badesch and others here can benefit from this educator/advocate who amplifies the truth sung in the streets.
It is time to admit that your broadly-scoped ambiguity regarding ASA’s funding and advocacy initiatives, like Autism Speaks’, have intentionally been designed to maximize your efficacy in maintaining your organization’s operational existence, not my autistic family’s.
Perhaps, you missed my pleas for information and advocacy support, amidst all those important incoming donations.
Sincerely,
Sharon Howarth
autisminfonow@gmail.com
Since I used to have autism, I’m on the lifestyle side. What if we had a conference instead of a summit? With trainings and workshops, we could teach each other everything from ABA to transitional housing, then discuss policy goals in caucuses.
As an ex-autism blogger (autism.about.com) I will say this about that: if you do succeed in creating a group that can agree upon basic values and goals, that group WILL be attacked by others in the autism community who are not a part of it.
You CANNOT create a unified “autism community.”
Why? Because there is a very, very vocal community for whom “autism” has become, in essence, a faith issue. They believe that the underlying, significant issues in autism relate to assigning blame for what they believe is deliberate and intentional “poisoning” of their children.
So long as that belief remains strong, it won’t matter what the kids need, or what the adults need, or what the parents need. What will matter now and (so far as I can tell) always is the belief that evil people are deliberately out there injuring children — and “those people must be stopped.” They want to see what they believe is justice.
From time to time, I made “controversial” statement like “I don’t know what causes or cures autism,” and the level of anger I’ve experienced has been overwhelming. IMO, my statement are very, very mild. In fact, it is hard to believe that they are controversial. But the reality is, even the mildest and least antagonistic statement will attract vitriol if it is not in agreement with the “faith” statements of the angriest and most vocal.
Lisa
My son Hunter, (Hunter’s Voice on facebook) who is only 11 and has HFA, has asked me this many times…”why can’t all the Autism groups just get along”? Hope everyone starts to listen!
I am not an individual with autism, but the person posting as “Tacitus” represented my reaction so perfectly I simply repeat their words “Are you kidding? This is a fundamental issue. I’m not going to just stop caring that people don’t want to spend money helping living autistics, that they’d rather turn all of us into science experiments in order to get rid of us all without breaking any laws. I doubt the people who care more about cures and prevention than integrating real people into society will simply calm down and share either.”
I am the co-leader of a charitable organization in Canada, and have no qualms about “competing” with other disability organizations – those who reinforce social concepts of disability (including autism as a leading example) as a disease (and people) to be eradicated, and/or are primarily motivated by building and sustaining systems responses that promote segregation.
Ridiculous causation arguments and de-humanizing talk of “cures” are among the many disturbing concepts that are forms of violence against people who have autism. That cannot be ignored. Just be virtue of having the word “autism” in their name, there is no reason to try to include everyone under the same umbrella. Some groups SHOULD be left out in the rain.
This is all fine and good, but will be meaningless as long as these groups keep ignoring the Autistic individuals themselves. Instead of always speaking for us, and saying what you think we think, let us have a place at the table and a voice in all this. Who knows better what Autistics need and want than Autistic people themselves.
Give us a voice, or you’ll never get our support!!!
“If human beings are perceived as potentials rather than problems,
as possessing strengths instead of weaknesses,
as unlimited rather than dull and unresponsive,
then they thrive and grow to their capabilities.”
~~Robert Conklin
The numbers are horrific. The need is endless. The story, Autism rates jump again in Sacramento region, came out from the Sacramento Bee… Aug. 6, 2012
“About 3,830 students in the four-county area were autistic in December 2011, up by 450, or 13 percent, from 2010. The rise occurred even as total enrollment in the region stayed flat.
“Statewide, the number of autistic students rose by 6,000, or 9 percent, to almost 72,000. For perspective, the number of autistic students in California now outnumbers the total enrollment of Elk Grove Unified, the region’s largest school district.”
Those jaw-dropping numbers should have everyone’s attention. Unless we honestly and fervently ADDRESS THE CAUSE AND STOP THE EPIDEMIC, autism is going to bury us. It won’t matter how good the services are, there’ll never be enough as the autism tsunami washes over us.
Imagine if after Pearl Harbor, all we’d done was to care for the wounded. Autism is the enemy and we’re under attack. How bad do the numbers have to get before we get at the cause?
Anne Dachel, Media editor: Age of Autism
I believe that a unified autism community CAN be created — by prioritizing mutual respect, promoting participation of people with autism, and accepting the uncomfortable but proven reality that vaccine injury can cause autism.
Daily more and more children are labeled autistic after adverse reactions to vaccines. Tragically this inconvenient truth continues to be denied by vaccine stakeholders, cronies and cowards, though abundant scientific proof exists in:
- victims’ immune panels & lab tests, radiology results, doctors’ notes;
- researchers’ clinical studies and independent epidemiology;
- scientific analysis of caregivers’ health diaries and before-and-after videos;
- vaccine injury reports to VAERS, VSD and the NVICP’s “83 Canaries” cases;
- investigative journalism and citizen FOIA requests into CDC machinations.
One classic divisive attitude is denial – such as referring to vaccine-induced autism as a “faith issue” or saying parents’ reports are “merely anecdotal.” Who would believe or trust someone who will not take adequate time to understand the medical symptoms, emerging science, politics and families’ 24/7 reality of living with vaccine-induced autism?
When people unaffected by vaccine injury inaccurately discuss it or deny it, ignoring voluminous irrefutable hard evidence and the victims now numbering into tens of thousands (who’ve been uniting en masse on social media), of course the affected people and their families will feel not only unrepresented but profoundly offended. And denial is simply ludicrous given the large number of children with the autism label whose health has improved with biomedical interventions.
True representation of the autism community means accepting uncomfortable issues and standing up for everyone with autism, despite the inevitable pushback from profiteers and timid defenders of the mediocre status quo.
Well, the ASA branch here in Erie has done some good. Problem is, just about all the groups I can find are NT-controlled, right down to the nitpicky details like the NTs putting pizza on plates for a group of auties all in high school at the youngest. (We were bowling as part of a local alley’s regular business night. If we can handle bowling, I’d hope we can get our own pizza, that we’d paid for, kthx.)
Re person-first: Problem is that autism, being a *pervasive* developmental disorder, affects so many parts of an autie’s life that there really is no getting around it. Several of us, myself included, self-identify as autistic people. That includes the idea that if aut$peaks got its wish and autism magically disappeared tomorrow, whatever was left of us would be so dramatically different as to be unrecognizable.
Re Hunter: It’s pretty painful to “get along” with people who reject who and what you are. Some people try. Some even manage to do it for a while. But then they find that making all that effort hurt themselves. And that hurt usually lasts for a lot longer than the “get along” did. Why hurt ourselves trying to get along with people who don’t care about *us*?
Passionate discussion, is not the same thing as infighting. Demanding to be included, for once, is not the same as infighting.
Any such stakeholding group as is being proposed will need to have at the table a MINIMUM of EQUAL numbers of Autistic Self-advocasy groups as those of parent, research and/or professional groups in order to maintain any plausibility. We will not stand for a token group or token famous Autistic. This is only fair. Were any other Disabled group being discussed, and such a meeting being proposed, it would be a given that parental, research and professional groups would be given minority representation at the table.
A site needs to be found that will accomedate Autistic sensory issues (no flourescents, no scents worn, etc.) and there will need to be screens to read what is being said as it is being said. There must be put into place ways to accomedate those of us who utilize augmentative communication.
…”wants to be part of the solution to this epidemic, not part of the problem. I would love to participate.”
Nancy Alspaugh-Jackson
Executive Director, ACT Today!
Nancy, Do you not understand why you will not be a part of the solution? Of course you don’t see it, because autistic people, and people with other disabilities are still grossly marginalized and left out of the conversations, even when the conversations are about us! You are referring to autism as “this epidemic”. That is not the solution autistic people and advocates need or want. it’s the very dialogue we detest. In fact, it is what many of us fear about the current landscape. The years and years of cure/cause/prevention thinking about us has created this divide. Autistic people and advocates are finally organizing and coming together, speaking out against “organizations” like yours, Autism Speaks and ASA. What kind of “treatment” is offered by your group? I would be interested to know and I will take a guess that chelation may be something you practice or encourage. We’ve had enough.
Thank God! Its about time, we all get together to get results. I would love to be involved in this! I have been a member of about 5 or 6 different autism organizations and feel so strongly that this is a step in the right direction!
I also agree with Scott (Pres of Autism Soc of America). There is simply more power in numbers than fragmentation. Once we start picking at each other over what we personally think is more important to us, we lose sight of the common goals we all share: more funding in research AND treatment, inclusion, autism awareness programs, etc. Only the attainment of these goals can help our children and ourselves! I want to see this happening in Canada too.
I too see the need for cooperation and pooling resources to improve the lives of adults and children with disabilities. I also see that legally, parents make decisions on behalf of their children–neurotypical or autistic. At the same time, I am cautious of spending my money, my experiences, my audible spoken voice, and much more towards parent-run groups like autism speaks. Often it seems like their perspectives are the only ones that matter–so much so that the general public is unaware that there is any other perspective.People who are so certain that *they* are right that they plow straight through and monopolize conversations are quite simply scary. And they should be to other people as well! I may not have large amounts of money and the ability that many typical folk have to rally groups of people– but surely I am not required to help people who have no interest in what I have to say. Like autistic children, parents and large organizations must be socialized. They too must learn to play well with others.
As a frightened, lonely, scared autistic adult, I can tell you without even the slightest stutter that any summit or conference proclaiming the need to end divisiveness yet welcoming Autism Speaks is urinating into a strong wind. All of the hate, anger, and rage that comes from people like myself is because of people like Autism Speaks. I have burned expensive Stallone discs because he tied in with Autism Speaks, and will never watch a film with him in it again. The sight of a puzzle piece at a place where I go to shop is enough to make me sick and possibly even violent. Autism Speaks created this climate of fear for autistic adults. They should not be welcome anywhere except prison for hate crimes. Tell them to get lost, and a summit promoting union has a chance at success. Otherwise, you are talking out of your hat.
All the groups have to do is include autistic people in the mix. They’ll tell people the truth on how approach autism awareness
Mr. Badesch, a group collaboration already exists. No need to reinvent the wheel. http://www.globalautismcollaboration.com. Why hasn’t ASA joined?
Advisory Committee Members – Consists of representatives from the following organizations:
Autism Research Institute (United States)
AutismOne (United States)
EmergenzAutismo (Italy)
Mindd Foundation (Australia)
National Autism Association (United States)
SafeMinds (United States)
Schafer Autism Report (United States)
Talk About Curing Autism (United States)
The Autism Trust (United Kingdom)
Unlocking Autism (United States)
Bottom line from my point of view…I can get online and be offered a hat, shirt, cup, bracelet, necklace, blah blah blah with a puzzle piece on it. Now I will be able to go walmart and buy school supplies with a puzzle piece. What I can’t seem to find is a good resource to help my son make progress. I can’t seem to find a program within the school that I feel confident in. Even if I purchased those silly school supplies I may end up homeschooling and right now I am trying to save up for an Ipad because the only way to access the apps that may help is to spend more money. The more I see of that puzzle piece the more I dislike it. If they come together and create a widespread system so we can just pick one…I am all for it, but they all have to understand what is truly needed. It’s not hats or pencils…it’s throwing out all of this whats to blame business and do something that makes us all smile for the future.
Mooncalf writes: “Any such stakeholding group as is being proposed will need to have at the table a MINIMUM of EQUAL numbers of Autistic Self-advocasy groups as those of parent, research and/or professional groups in order to maintain any plausibility. This is only fair. Were any other Disabled group being discussed, and such a meeting being proposed, it would be a given that parental, research and professional groups would be given minority representation at the table.”
The quote above illustrates the problem with Mr. Badesch’s rainbows and unicorns approach. While most in the parent/professional/academic community support the inclusion of self advocates with Asperger’s syndrome or HFA in policy formulation (and more than “token” strides are being made to accomodate them), far too many who identify with the leading self advocacy groups seem to embrace the notion that they should totally control the agenda because they have “autism” and the other stakeholdes don’t. That view assumes (wrongly I think) that the needs of their particular ASD “subtype” should dominate policy for all.
I believe that roughly representational participation of subtypes, whether by self advocates or representatives, is appropriate and ought to be a goal, but getting there is problematic, since accurate data about subtype populations (some of which certainly overlap) doesn’t yet exist. This makes Mooncalf’s “we want half the seats at the table…just because” argument unsupportable.
Compromise is the only approach that’s going to yield results on any policy, which is why cooperation should be issue specific (see my comment above). There is this notion shared by some self advocates (many of whom seem young, highly educated, and skilled…especially in cyberspace) that they are entitled to control all autism policy and shape it to their needs. Perhaps it’s an inability on the part of some to appreciate other perspectives, but this “nothing about us unless I say so” approach will, if left unchecked, create policies which may be detrimental to the many folks with ASDs who, because of the severity of their disabilty, are unable to participate fully in the process of shaping autism policies. While no one has any hard numbers, my personal sense is that this latter group, who have no choice but to rely on parents, guardians, professionals and others to advocate on their behalf, is a larger group (by multiples) than the self advocates.
Let’s all get together on things we can all agree on (there are many,many issues) and agree to disagree on others.
I just read again all the comments and while I respect each person’s thoughts and comments, the comments strongly illustrate the need for us all to come together. It just appears that some in our community look to find reasons for fault rather than suggest solutions. Of course we would have self advocates at the table. Did we ever suggest something different? I am proud that ASA has a high representation of our staff who are autistic and have strong and active involvement of autistic people within our governing structure. And of course, we know there are other groups that have come together for a common good. But what we want to promote is that we stop the negativity that is far too often characteristic of our community. We need to respect and appreciate that we all want the best for each autistic person and parents. This can’t be an us vs. them debate. It has to be a “we” debate. I am by nature an optimistic person and want to believe that we are all in this for the reason that we want that best. But, we also need to come to the realization that we aren’t where we need to be as a community. People with developmental disabilty remain one of the most discriminated groups of individuals in our society. We actually have the national association of school adminstrators (which is made up of local school district adminstrators and supported financially by school districts) fighting national efforts to address the issues of un-needed and un-necessary restraint and seclusion. Would local school districts ever get away with supporting a national effort to advance the segregation of individuals of any other group? We can talk about reserach vs. services, but the reaility is that almost in every state, there aer very long multi year waits for services for people with developmental disabilities. But we also do need research to help us do better in what we do. How do we balance those two in terms of funding and efforts? We are a nation that finds waiting more than a minute for someone to answer a call wrong, but don’t, as a society, find it wrong to have a person needing help be put on a waiting list for services of more than five years. Let’s stop the personal attacks at individuals and agencies and use the energy to move our community forward and get a seat at the table that so many other groups have achieved. We never said who should be at the table. What we said, and I will continue to say, is that we need to get a table and get people around it to figure out why we aren’t moving forward as fast as we should and need to.
Again, I apperciate everyone’s comments and respect everyone’s right to voice their oppostion to an idea. I think the dialougue on this page and others we have had since announcing our call for a national summitt has been good. But, lets start moving the rheterotic not to fault finding but to solutions on how we chave the national discussion to full acceptance rather than awareness and solutions rather than discussion.
Have a great weekend.
Scott Badesch
Many of us with an actual Autism Spectrum diagnosis reject and dislike Person First Language (PFL). It is for folk who do not value a Disability identity.
This dislike should be respected because we are the ones who carry the diagnosis. I would never dream of userping another groups internal self-identity. I do not comprehend why others want to tell me I must use PFL. Ah, but then this is what’s truly at the heart of all this, isn’t it? Who gets to speak for Autism and potentially control resources. How terribly inconvienient it is that some of us can communicate.
I know of no other minority group that would not only not be invited to the table, but would be denied seats pre-emtively. Perfectly well-meaning folk have no problem exluding an entire segment of a diagnosed spectrum beause for them we dont act enough like their silent rocking children. We AUTISTICS are far closer to our silent fellows then you’ll ever be able to be. To think otherwise id to be in denial. We are a huge resource.
It is unrealistic to expect us Autistics to establish joint goals with organizations who view us as an “epidemic”.
Organizations who wish to cooperate with us should value us, respect us and accept us as we are, not try to make us less autistic.
Some of the largest autism organizations in America spread ugly lies about us, portraying us as inferior and pitiable. Some of those organizations put huge amounts of money into research aimed at eradicating us.
You want to work with Autistics? then acknowledge the beauty of the Autism spectrum, promote neurodiversity and celebrate Autistic culture!
What’s the issue with calling people autistic? I am not an individual ‘with’ autism, just as I am not an individual ‘with’ female-ism. It is not separate from who I am: I am an autistic woman.
Autism, an ‘epidemic’? You mean like the AIDS epidemic? Epidemics are vast outbreaks of diseases. I don’t have a disease. I don’t want to be cured, I just want to live optimally, to use my autistic strengths to the benefit of the world. I WANT TO BE AUTISTIC.
I do not know how bringing together groups like TACA and Autism Speaks, etc. whose main goal is the elimination of Autism, with groups like the Autism Society of America, etc. who are working to improve the lives of Autistics from birth to death really makes any sense. Yes there are chapters of the Autism Society that do have Autistics actively serving on their boards, Autistics in paid positions at Autism Society, etc. Unlike Autism Speaks they bring Autistic self-advocates into the “conversation”, but sadly Autism Speaks and their “celebrity” (they have only been around since 2005) makes everyone forget that the Autism Society exists and is trying to do good things in communities (nearly 50 years old), further more Aut$peaks confuses people and people think that the Autism Society and Aut$peaks are the same entity. Nothing good would every come out of such a joining unless groups like TACA and Autism Speaks stop trying to rid the world of Autism, in other words go through a full mission overhaul and welcome Autistics into the “conversation”. A world without Autism is a world without me! :(
I am Autistic, not a person with Autism. I despise “person first language”.
comparing with apple and orange is a disgrace. Autism it comes in many degree and levels. To think that a parent would have time to participate in a political floor. who can afford that?. Where the money is going? To whom is going?? Enough is enough! We are overtax with our special hearts until the mandatory 18 year old marck. vote what is right for your child and not for red and blue partyline. Our needs are different but the umbrella is autism.
back to you!!
Ken G,
Neither you or I as individuals on the spectrum represent or understand the needs of everyone on the spectrum. There are some whom have co-morbid conditions like intellectual disability, gastro-intestinal illnesses, immune system problems, fragile X syndrome; as well as some with conditions like regressive autism, specific to males studied as having abnormal brain growth, among many other subgroups of individuals on the spectrum that are much different than you and I. It is impossible for us to walk in their shoes, to either fully understand or provide what it is that may allow them fuller potentials in life.
Yes, your participation in the autism culture that you take part in, the many skills and abilities that you possess and share among your peers, should be both celebrated and respected, however you and I are only one tiny part of a spectrum of millions of individuals with diverse needs, that attention must be focused on. No one organization or group of individuals can meet these needs, and there is a great divide in fully understanding these needs and what is required to meet them. If there are those that don’t want to move forward in a cooperative effort, they will be left behind in a smaller effort, as well as part of a smaller autism community.
There is no valid reason that I cans see why the hope of some who look forward to the day of a potential cure of some of these co-morbid conditions or severe symptoms, should be extinguished, nor should there be any concern that those that do not need or desire treatments, therapies, or cures associated with these type of co-morbids and severe symptoms, will be asked to change anything about their lives if they are pleased with life as is.
And, there is no valid reason that I can see why differences of opinion of semantics used in language by those that wish to be referred to and identified as autists, autisitic, aspies, person with autism, person with asperger’s syndrome, on the spectrum, or just by their given name, without any reference to disability, cannot co-exist and gain mutual respect and acceptance on a spectrum that consists of millions of diverse individuals as well as caring family members and friends, and friends of those friends.
There really is no us and them in life in a world of diversity of individuals that comprise the totality of the human spectrum of diversity.
As has been the case since the beginning of human history, those that cooperate with each other become stronger, and those that refuse to cooperate often do no achieve the potential of what can be accomplished in life.
If an attempt at understanding and acceptance cannot be achieved within the broader autism community, there is little chance that it will be found in the much broader human spectrum of diversity, in the future.
For matter of clarification, I believe it is “person with autism,” “people with autism,” “child with autism” and NOT “autistic people.” Shame on Scott Badesch (President, Autism Society of America) for his own insensitive comment on this article. Autism Speaks properly references “people with autism” in their statement. We must never let an ailment, condition or disease define a person or group of people.
Re Kate:
OK, if you’re on the spectrum & prefer person-first, that’s your call–same as for spectrumites that prefer disability-first. (It’s the whole “respect the person’s self-identity” thing.) Please show up to repel NTs who *demand* that people (including spectrumites) use person-first where either no preference has been expressed, or spectrumites have expressed a preference for disability-first. Thanks.
I’m willing to give autistic-controlled organizations a bit more time to try representing all autistic people. I’m certain we haven’t got everyone yet, but equally certain that NTs aren’t making the job any easier.
As for worries about being forced to take a cure, fine. It’s not as though USians have ever been: involuntarily sterilized; deliberately infected with various diseases; deprived of the necessary glands, etc to undergo puberty; or otherwise subjected to damaging “medical” procedures without their knowledge, let alone their informed consent. Nor would consent ever be obtained by withholding needed services. Leveraging a reinforcer is right out.
…except for the fact that all of those have happened, in some cases still happen, and I believe that DisScoop has reported on the fact that people are still deprived of puberty without their informed consent. I have no reason to believe NTs will be any less forceful in insisting on a cure.