You'll find a different kind of autism awareness in the "No Myths" public service announcement—one that offers a realistic view of the autistic population, instead of stereotypes and myths. ASAN President Ari Ne'eman has issued the following statement about the PSA and encourages supporters to view it and spread the word:
ASAN worked with the Dan Marino Foundation and Kent Creative to develop the following autism PSA. Take a look, tell us what you think and please spread the word with blogs and outreach.
Youtube link: http://www.youtube.com/watch?v=Y_dPZDcX_ck
Captioned Version: http://www.overstream.net/view.php?oid=udtvrbt0rlao
Go to http://www.nomyths.org/ to learn more. This PSA is brought to you by the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/), Kent Creative (http://www.kentcreative.com/) and the Dan Marino Foundation (http://www.danmarinofoundation.org/).
About the Public Service Announcement:
The "No Myths" PSA offers a refreshingly positive and optimistic view about life with autism. And it was written and performed by people who should know--individuals who are on the autism spectrum themselves. The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way. Ari Ne'eman, president of the Autistic Self Advocacy Network, leads a cast that includes {in order of appearance} Dena Gassner, Ben Liske, and Jacob Pratt.
The Dan Marino Foundation of Weston, FL sponsored the piece, which was filmed by Nashville-based Kent Creative. Jon Kent directed the PSA and Britt Simmons was the Director of Photography.
"No Myths" was filmed inside the Parthenon in Nashville, TN. The Nashville Parthenon, which was built in 1897, is a full-scale replica of the ancient Greek Temple. The two bronze doors, used as a symbol throughout the PSA, weigh 7.5 tons each, and are thought to be the largest pair of matching bronze doors in existence. The producers wish to thank Citation Film Support and the Filmworker's Club of Nashville for their generous support of this project.
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530
Thursday, April 16, 2009
Saturday, March 7, 2009
White House Internship Program
On Thursday, March 5th, ASAN joined representatives of several dozen advocacy organizations at a briefing at the White House on upcoming changes to the White House Internship program. The White House Office of Public Liaison is actively interested in recruiting a diverse applicant pool, including individuals with disabilities, to the White House Internship program. They have asked us to forward this to our networks and encourage autistic college students and recent college students to apply. Feel free to forward this announcement.
President Obama Launches White House Internship Program
President Obama today launched the White House Internship Program for his administration and announced that applications are currently being accepted for the summer of 2009. Those selected to participate in the program will gain valuable job experience and an inside look at the life of White House staff while building leadership skills.
“This program will mentor and cultivate young leaders of today and tomorrow and I’m proud that they will have this opportunity to serve,” said President Obama. “I look forward to working with those that are selected to participate and I want to commend all who apply for their desire to help through public service to forge a brighter future for our country.”
In addition to normal office duties, interns will supplement their learning experience by attending a weekly lecture series hosted by senior White House staff, help at White House social events, and volunteer in community service projects.
The 2009 Summer Internship program runs from May 22 to August 14, and the submission deadline is March 22, 2009.
Those interested in applying to the White House Internship Program must be:
• US Citizens
• Eighteen years of age on or before the first day of the internship.
• Enrolled in a college or university (2-4 year institution) or must have graduated from college in the past two years.
Interns will be placed in a departmental office for their internship. Below is a list of departments in the Office of the President and the Office of the Vice President where interns could be placed.
White House Department of Scheduling and Advance
The Office of Cabinet Affairs
The White House Communications Department
The White House Office of Public Liaison and Intergovernmental Affairs
The Office of the First Lady
The White House Office of Legislative Affairs (OLA)
The Office of Political Affairs
The Office of Management and Administration
The Office of White House Counsel
The Domestic Policy Council
The White House Office of Presidential Personnel
Office of the Vice President
More information on the White House Internship Program, including application instructions, can be found at: www.whitehouse.gov/about/internships
President Obama Launches White House Internship Program
President Obama today launched the White House Internship Program for his administration and announced that applications are currently being accepted for the summer of 2009. Those selected to participate in the program will gain valuable job experience and an inside look at the life of White House staff while building leadership skills.
“This program will mentor and cultivate young leaders of today and tomorrow and I’m proud that they will have this opportunity to serve,” said President Obama. “I look forward to working with those that are selected to participate and I want to commend all who apply for their desire to help through public service to forge a brighter future for our country.”
In addition to normal office duties, interns will supplement their learning experience by attending a weekly lecture series hosted by senior White House staff, help at White House social events, and volunteer in community service projects.
The 2009 Summer Internship program runs from May 22 to August 14, and the submission deadline is March 22, 2009.
Those interested in applying to the White House Internship Program must be:
• US Citizens
• Eighteen years of age on or before the first day of the internship.
• Enrolled in a college or university (2-4 year institution) or must have graduated from college in the past two years.
Interns will be placed in a departmental office for their internship. Below is a list of departments in the Office of the President and the Office of the Vice President where interns could be placed.
White House Department of Scheduling and Advance
The Office of Cabinet Affairs
The White House Communications Department
The White House Office of Public Liaison and Intergovernmental Affairs
The Office of the First Lady
The White House Office of Legislative Affairs (OLA)
The Office of Political Affairs
The Office of Management and Administration
The Office of White House Counsel
The Domestic Policy Council
The White House Office of Presidential Personnel
Office of the Vice President
More information on the White House Internship Program, including application instructions, can be found at: www.whitehouse.gov/about/internships
Friday, January 16, 2009
Ending Restraint and Seclusion
The National Disability Rights Network presented a report to Congress earlier this week on the harm done to children with disabilities by the use of dangerous restraint and seclusion practices in the schools. ASAN was one of the organizations that signed as a supporter of its policy recommendations. The report described specific cases of children who had been injured or killed as a consequence of being restrained or isolated by their teachers and other school employees, and it recommended policy changes to prevent such practices.
Because the federal government does not keep data on such abuses and there are no national reporting or tracking requirements, it is likely that the number of children injured by restraint and seclusion may be significantly larger than the cases reported. Rep. George Miller, who chairs the House Education and Labor Committee, has promised to schedule a hearing on the restraint and seclusion issue.
Autistic children, because of their behavioral differences, are disproportionately victimized by restraint and seclusion practices in the schools. Evelyn Towry, an eight-year-old autistic girl in Idaho, recently was restrained by two teachers whose goal was to prevent her from going to the school Christmas party wearing a cow sweatshirt. As reported by KXLY.com, Evelyn said that she struggled with the teachers because "they were holding me down and I got thumb bruises on me." She was taken from school in handcuffs, briefly placed in a juvenile detention center, and charged with battery (a charge that was soon dropped)... all because of an argument over a cow sweatshirt.
Children in Ohio also are injured and sometimes killed as a result of school restraint and seclusion practices. The Cleveland Plain Dealer reported last week on the case of Faith Finley, a student who suffocated as a result of being held face down at her school. Cuyahoga County Coroner Frank Miller declared her death a homicide. The Ohio Department of Mental Retardation and Developmental Disabilities has banned this practice, known as "prone restraint," because of its danger, but it still occurs in some Ohio schools.
Ohio has no statewide requirement for reporting of incidents involving restraint and seclusion.
Because the federal government does not keep data on such abuses and there are no national reporting or tracking requirements, it is likely that the number of children injured by restraint and seclusion may be significantly larger than the cases reported. Rep. George Miller, who chairs the House Education and Labor Committee, has promised to schedule a hearing on the restraint and seclusion issue.
Autistic children, because of their behavioral differences, are disproportionately victimized by restraint and seclusion practices in the schools. Evelyn Towry, an eight-year-old autistic girl in Idaho, recently was restrained by two teachers whose goal was to prevent her from going to the school Christmas party wearing a cow sweatshirt. As reported by KXLY.com, Evelyn said that she struggled with the teachers because "they were holding me down and I got thumb bruises on me." She was taken from school in handcuffs, briefly placed in a juvenile detention center, and charged with battery (a charge that was soon dropped)... all because of an argument over a cow sweatshirt.
Children in Ohio also are injured and sometimes killed as a result of school restraint and seclusion practices. The Cleveland Plain Dealer reported last week on the case of Faith Finley, a student who suffocated as a result of being held face down at her school. Cuyahoga County Coroner Frank Miller declared her death a homicide. The Ohio Department of Mental Retardation and Developmental Disabilities has banned this practice, known as "prone restraint," because of its danger, but it still occurs in some Ohio schools.
Ohio has no statewide requirement for reporting of incidents involving restraint and seclusion.
Tuesday, January 6, 2009
Obama Transition Autism Policy Recommendations
The Obama transition team invited ASAN and other advocacy groups to present recommendations on policy priorities for autism issues. ASAN President Ari Ne'eman issued the following statement about these recommendations:
Hello,
This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.
Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.
Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530
Hello,
This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.
Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.
Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530
Saturday, November 1, 2008
Online ASAN Teen Group
A moderated discussion group for autistic teenagers, sponsored by ASAN, is now open to new members. Information and group rules are posted below:
A new yahoo group has just been created to be open exclusively for adolescents and teens on the autism spectrum, offering an opportunity for autistic adolescents and teens to interact in a supportive, autistic-friendly internet environment. It is sponsored by the Autistic Self-Advocacy Network, an international non-profit organization run by and for autistic adults and youth, working to advance neurodiversity, disability rights and autistic culture.
Group Rules:
1. To join you must be on the autism spectrum (self-diagnosed individuals are welcome) and at least 13 years of age.
2. Be respectful of your fellow list members.
3. Do not repost messages outside of the list.
4. If you have a question, feel free to ask.
5. Do not engage in personal attacks against other list members.
The list will be closely moderated by adults from the Autistic Self Advocacy Network to ensure that all list content remains legal, age-appropriate, free of spam and solicitation, and in compliance with the group rules.
To join the group, visit http://groups.yahoo.com/group/ASANTeens , click the "Join this group" button, and follow the instructions.
For more information, contact list moderator Dora Raymaker at dora@aaspireproject.org.
Please pass this information along to any adolescents and teens you know who would be interested!
A new yahoo group has just been created to be open exclusively for adolescents and teens on the autism spectrum, offering an opportunity for autistic adolescents and teens to interact in a supportive, autistic-friendly internet environment. It is sponsored by the Autistic Self-Advocacy Network, an international non-profit organization run by and for autistic adults and youth, working to advance neurodiversity, disability rights and autistic culture.
Group Rules:
1. To join you must be on the autism spectrum (self-diagnosed individuals are welcome) and at least 13 years of age.
2. Be respectful of your fellow list members.
3. Do not repost messages outside of the list.
4. If you have a question, feel free to ask.
5. Do not engage in personal attacks against other list members.
The list will be closely moderated by adults from the Autistic Self Advocacy Network to ensure that all list content remains legal, age-appropriate, free of spam and solicitation, and in compliance with the group rules.
To join the group, visit http://groups.yahoo.com/group/ASANTeens , click the "Join this group" button, and follow the instructions.
For more information, contact list moderator Dora Raymaker at dora@aaspireproject.org.
Please pass this information along to any adolescents and teens you know who would be interested!
Monday, October 6, 2008
Autism Summit in Cleveland
Next weekend, an event addressing new developments and issues related to autism will be held in Cleveland, Ohio. It is called Autism Summit 2008 and features presentations by educators, doctors, parent advocates, and others.
Although the conference primarily takes a medical perspective in its approach to autism issues, the schedule also includes presentations by autistic self-advocates, including Elijah Wapner and Taylor Cross. As part of a comparative analysis of popular therapies, Stephen Shore points out that professionals should begin with "a general sense that people with autism have something valuable to contribute to the community as a whole."
This is a three-day conference and will run from Friday, October 10, through Sunday, October 12. Discounts are available for autistic individuals who wish to attend.
Although the conference primarily takes a medical perspective in its approach to autism issues, the schedule also includes presentations by autistic self-advocates, including Elijah Wapner and Taylor Cross. As part of a comparative analysis of popular therapies, Stephen Shore points out that professionals should begin with "a general sense that people with autism have something valuable to contribute to the community as a whole."
This is a three-day conference and will run from Friday, October 10, through Sunday, October 12. Discounts are available for autistic individuals who wish to attend.
Wednesday, October 1, 2008
Joint Comment to the IACC
In response to the Interagency Autism Coordinating Committee's request for public comments on its Draft Strategic Plan, ASAN and other autism and disability rights organizations have submitted the following joint statement:
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
http://www.autisticadvocacy.org/
732.763.5530
Andrew Imparato
President
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
http://www.aapd-dc.org/
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
http://www.taaproject.com/
Compiled by ASAN Board Member Paula C. Durbin-Westby
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
http://www.autisticadvocacy.org/
732.763.5530
Andrew Imparato
President
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
http://www.aapd-dc.org/
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
http://www.taaproject.com/
Compiled by ASAN Board Member Paula C. Durbin-Westby
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