The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008
This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum.
The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC’s decision-making process, research topic selection, research design and research implementation.
The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.
The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:
1. All federally-funded researchers must consider the impact that their research will have on autistic citizens’ human rights, their dignity, and the quality of their lives, from prenatal life forward.
Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.
2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.
Currently (as of May 12, 2008), only 1% of NIMH’s $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee’s “sense of urgency” when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.
For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals’ processing strengths and state-of-the-art technology should be pursued.
Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, “We know that behavioral treatments make some difference but it’s a relatively small amount of difference.”
Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children’s’ needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.
3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.
Much research and fundraising language emphasizes “costs to society” and uses the disrespectful rhetoric of “burden.” The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because “portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them.” We strongly agree.
Similarly, many NIH-funded researchers and staff speak of autism as “a devastating disorder.” However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as “impairments,” but which, in reality, are often innocuous or compensatory mechanisms.
4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.
Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: “…involve deaf people themselves at all levels of the undertaking. Federal agencies … should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results.” We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
https://autisticadvocacy.org
732.763.5530
Andrew Imparato
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
http://www.aapd.com
Barbara Trader, MS
Executive Director
TASH
http://www.tash.org
Sharisa Joy Kochmeister,
President
Autism National Committee
http://www.autcom.org
Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
www.taaproject.com
Compiled by ASAN Board Member Paula C. Durbin-Westby