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First Published Monday, 1 December 2008

Fwd:


Hello,


Last week, the Autistic Self Advocacy Network was invited by the National
Institute of Mental Health Director Thomas Insel to present on the concerns
of the autistic community in relation to autism research ethics to the
Inter-Agency Autism Coordinating Committee (IACC), ASAN Board Member Paula
Durbin Westby delivered the presentation. Links to the powerpoint and the
notes from the presentation itself can be found on the ASAN website
here<http://www.autistic advocacy. org/documents/ IACC/EthicalAuti smResearchPresIA CC-Nov21- 08.ppt>and
here<http://www.autistic advocacy. org/documents/ IACC/EthicalAuti smResearchCommen tsIACC-Nov21- 08.doc>.
We look forward to your thoughts.


Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autistic advocacy. org
732.763.5530



Comment:


Personally, I wholeheartedly support the views and concerns so eloquently presented.  Those voices who put forth their ideals, representative of a great many within the community, did a sterling job (given the dialogue courtesy of the powerpoint/notes.)


Among the many excellent points highlighted …, “we do not find it ethical for the research community(or the professional community) to treat autism like it’s a disease or illness.  Autism is a developmental disability and not a condition that stands alone.”  The recommended move toward that of a focus on services and supports rather than a narrow focus on causes, cures, and “the recovery” concept, is long overdue and much needed.


Ethical Research should unequivocally include and value first-hand perspectives.  Who could possibly disagree that :”the goal of all scientific research into any disabling conditions should ultimately be the application of that research to real-life situations in ways that directly benefit the subjects of that research.”  As such, members of the autism community must be granted a voice, represented in both numbers and diversity in all matters of research relevant to the community, for the community.


Julie



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