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The comments below were given by ASAN Board Member Paula Durbin Westby at the Inter-Agency Autism Coordinating Committee Meeting on Friday, October 23rd, 2009.

 

Thank you for permitting me to address this meeting of the Interagency
Autism Coordinating Committee. I am representing the Autistic Self Advocacy
Network.

I appreciate having had the opportunity to represent ASAN at the recent
Scientific Workshop. The meeting offered many opportunities to make changes
as the Strategic Plan is updated for 2010.

Inclusion of an objective to study ethical issues related to “the assessment
and communication of genetic, environmental, and clinical risk for autism”
was one of the recommendations from Panel 1, the panel I participated in.
This objective does not go far enough in that it only addresses assessment
and communication of risk. It does not address other ethical issues which we
believe to be important. Therefore we strongly urge an objective that would
address ethical, legal, and social issues related to all aspects of
research, not just the communication of risk, although that is a critical
area, given recent developments in identifying prenatal risk factors.

Another area for concern about ethics is early intervention, as
interventions are initiated at earlier and earlier ages . Ideas about what
early interventions will work are generally based on assumptions of
non-autistic people about what “the reasons for autistic behaviors” might
be, with little to no input from autistic adults, who can inform and guide
research.

A concerted effort is being made to increase acquisition of biological
materials, such as skin fibroblasts, brains, and other tissue types. There
is an ethical concern with collecting biologic samples from young children,
who are not capable of giving permission. Potentially, children might not
want to contribute biological material, if one of the purposes was for
developing a prenatal test aimed at selecting people like themselves out of
the gene pool.  Although there are many reasons for collection of biological
materials, this concern must be addressed. People on the autism spectrum who can communicate, and people with other disabilities such as Down Syndrome,and their families, have advocated against, and continue to advocate against, such an aim.

In general, recommendations of many of the panelists to include adults in
many sections of the Strategic Plan are a step in the right direction.

Although the IACC does not fund research, presumably it has some influence
on research priorities, or it would not bother to come up with budget
recommendations. Here are some figures from the 2009 Strategic Plan.

Recommended budget for diagnosis and assessment: $133,600,000

For biology and risk factor research, $179,000,000. For causes and
prevention, *$216,400,000.* Treatment and intervention gets $190,100,000.

For “Where Can I Turn For Services?” Where, indeed? Not to the
IACCrecommended budget, which suggests a grand total of $25,330,000.
If research were really funded at the levels recommended by the IACC, that question becomes even more anxiety-provoking for autistics and our families. We will certainly need to turn to avenues other than the IACC for answers to
questions about needed services and supports. Research into causes,
biomarkers, prevention, etc. will not help people who are alive today and
need evidence-based information about services and supports.

 

Recent research and initiatives in the United Kingdom can provide a model
for services-oriented research and also research into adult issues. The
National Health Service has released a study of autistic adults, indicating
that prevalence of autism in adults in the UK is one in a hundred, similar
to the recent figure here of 1 in 91 children. Interestingly, the NHS report
avoids alarmist rhetoric and talk of “an epidemic of autism.” In addition,
initiatives such as the “Don’t Write Me Off” employment campaign and
“Supporting people with autism through adulthood”  can make a real
difference in the lives of autistics, especially and young people who are
transitioning out of school settings. Sadly, the United States is falling
behind on crucial issues related to services and lifespan issues and is
failing autistic adults, families and communities.

 

Currently the Strategic Plan does not address communication differences and
disabilities at all. This is a surprising omission, since one of the
criteria for an autism diagnosis is communication disability. Although panel
4, on treatments and interventions, mentioned communication as an emerging
tool, *specific mention of communication research *should be incorporated
into the 2010 Strategic Plan.


Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

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