Autism Vox

This Is Only the Beginning

by Kristina Chew, PhD on December 20th, 2007

Now the real work starts I wrote at the end of a post announcing that Ransom Notes is Over. That “public awareness” ad campaign was over as of this afternoon. The December 19th Washington Post reports:

Opposition to the ads came from some of the very advocates who share the goals of the center, including adults who have psychiatric and neurological disorders. The Autistic Self Advocacy Network organized a campaign in the blogosphere, signed up more than 20 disability rights groups to their cause and collected more than 1,000 signatures on an Internet petition.

“These ads reflect some very old and damaging stereotypes about people with disabilities by suggesting that we are not entirely present and not fully within our own bodies,” said Ari Ne’eman, president of the network, who has Asperger’s.

The intention was never to spread stereotypes, [Dr. Harold] Koplewicz [director of the NYU Child Study Center] said. Instead, he hoped to use a provocative metaphor — that an untreated disability can hold a child hostage — and make an impact.

The metaphor certainly was provocative and did make an impact, though, it seems, not what was expected. Notes the December 20th New York Times:

Advocates for children with autism and for other special-needs children said the ads reinforced negative stereotypes.

“While many individuals spoke to us about the need to continue the campaign, inadvertently we offended others,” said Dr. Harold S. Koplewicz, the Child Study Center’s founder and director, who estimated that he had received 3,000 e-mail messages and phone calls. Thirty percent of those praised the initiative, he said, and 70 percent expressed anger and hurt.

“One woman was crying to me on the phone that she felt alone and ashamed about her child and thanking me because the campaign captured how she felt,” he said. “But we also heard from some parents who are working day and night to help their children, and the way they read the ransom messages was that they weren’t doing enough.”

The image of the crying, desperate, mother, is referred to as evidence of the Ransom Notes campaign’s impact. That image of a mother in tears does cohere with the notion of a parent feeling that her child has been “kidnapped” by autism, bulimia, etc.. But if the creators of Ransom Notes were thinking that numerous mothers, a-crying their eyes out, would make numerous phone calls to the NYU Center, this suggests to me one reason for the furor raised over the campaign. While many of the mothers (and indeed the parents) of special needs children whom I know have had their tearful moments, most of us think that there is a time for being sad, and a time to meet the yellow schoolbus, drive in rush hour traffic to a piano lesson, discuss a new prompting strategy with the piano teacher, make sure the swim bag has a towel in it, point out several times that the swim noodles are behind one’s child and not where he has been used to find them in a storage bin, get splashed by several other children because one is kneeling at poolside to speak to one’s child, make dinner, start eating one’s own dinner, undertake a thorough cleaning of the bathroom while simultaneously showering one’s child and doing laundry……………. trying to finish one’s dinner…….buying Xmas gifts for Charlie’s cousins…….smiling at another good day with one’s boy, who has autism.

There’s really no time for weepy phone calls but there’s always time to help our child and there’s always hope: This is the real work, for me. And I don’t think that this message, which is my day to day reality and the reality of many parents I know, was at all communicated by Ransom Notes and I thank Dr. Koplewicz for hearing this in the response to the ad campaign.

I o have a simple and concrete suggestion about what to do to get started on more of that “real work”: You can contact the Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD). On November 30th, the Interagency Autism Coordinating Committee met and approved a process to develop a Strategic Plan for research on autism. Notes the NIMH’s Request for Information (RFI):

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

* Treatment – includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.

* Diagnosis – is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.

* Risk Factors – has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.

* Biology –studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Information Requested

We are interested in receiving your input and ideas about what are high-priority questions and issues for advancing research on ASD. We ask for your constructive and specific suggestions in the following areas (please refer to the above descriptions for each area).

What topics or issues need to be addressed to advance research on the:

1. Treatment of ASD?
2. Diagnosis of ASD?
3. Risk factors for ASD?
4. Biology of ASD?
5. Other areas of ASD research?

Responses

Please send responses to iacc@mail.nih.gov no later than January 4, 2008.

Please limit your response to two pages and mark it with this RFI identifier NOT-MH-08-103 in the subject line. The responses received through this RFI will be collated, summarized, and provided to scientific workshop participants in January 2008. Summarized results will also be made available to the public. Any proprietary information should be so marked. Respondents will receive an email confirmation acknowledging receipt of their response, but will not receive individualized feedback.

I read this statement to the IACC meeting; there is a genuine wish for “stakeholder” (this means you) input in the Strategic Planning process regarding those research domains. Funding for the Combating Autism Act (CAA) was approved by the House of Representatives on December 19th and just as many, many raised their voices to respond to the Ransom Notes campaign, so does the IACC need to hear from you—from us—your email will be read—to use those funds towards research that you think needs to be done.

There’s still plenty of sensationalizing stigma about autism as yesterday’s Dr. Phil show—-featuring a child who was said to have autism who talked about murdering his mother—-attests. There’s still a need to advocate for children and persons with disabilities and to keep the dialogue about disability rights, about “treatment,” about acceptance and understanding. The Gimp Parade provides an overview of the response to “Ransom Notes” and some possible corporate connections, also noted by Furious Seasons and Whose Planet Is It Anyway? (who points out connections with the ad campaign to Autism Speaks). Donna at Autism Watch 2007 notes that it is kind of off to hear that her son was “kidnapped” as she hadn’t noticed. dkmnow lists a number of questions to keep in mind about future ad campaigns. 11d mentions the Ransom Notes campaign in regard to neurological diversity (and also considers what is an adjunct). Niksmom hears the fat lady singing. (And apologies if you sent me a link to your post on Ransom Notes and I have yet to cite it—1186 signatures on the petition as of 1am EST (20th December) has meant more than a few people have had more than a few things to say—very glad about this.)

Ari Ne’eman is appearing this morning at 11 AM on “The Largest Minority” Radio Show on WBAI 99.5 FM to discuss the disability community’s response to “Ransom Notes.”

This is only the beginning.

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POSTED IN: Disability Rights, Family, Media, Parenting