This dichotomy (cure vs. rights) seems to be a work in progress , almost all
impairment type are joining in, hum. Does it need to be? Can the views not
co-exist? I realize that power is on the side of cure , but ....
Maria
----- Original Message -----
From: "Judy Singer" <[log in to unmask]>
To: "OzAutism" <[log in to unmask]>
Cc: "OZAdvocacy" <[log in to unmask]>; "Disability Awareness"
<[log in to unmask]>; "Disability Research"
<[log in to unmask]>
Sent: Friday, April 07, 2000 9:10 PM
Subject: Autistiic Rally: Cure vs RIghts
> Hi,
>
> I thought people might be interested in the conflict brewing in the US
between
> the advocates of "Cure Autism Now" - a parent group wanting to find a cure
for
> autism, and between adult HFA who dont want to be cured, and who insist
that
> what they need is civil rights, awareness and resources to live full lives
as
> they are.
>
> On April 8th
>
> there is going to be a rally by CAN in Washington DC - called "Hear
Their
> Silence"
> at http://www.ark-inc.org/
>
> AND
>
> an online COUNTER-RALLY by adult autistics called "Hear Our Voices".
> at http://www.onelist.com/subscribe/hear-our-voices
>
> Below is a rather good letter that was sent to the Washington Post
outlining the
> issues.
>
> Judy Singer
>
> ----- Original Message -----
> From: Susan Golubock <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, April 07, 2000 10:42 AM
> Subject: DR, AC: Letter to the editor
>
> Dear Editor,
>
> I am concerned about the overemphasis on research into the causes and
"cure"
> for autism that I saw in the Washington Post article "Autisms New Face"
> (3/26/00) and the in the push for Congressional funding by CAN ("Cure
Autism
> Now") and ARK (Autism Resource Konnection) this week. The article
mentions
> repeatedly that the incidence of autism is "on the rise" (meaning that
there
> are dramatically more children and adults being diagnosed with autism,
> Asperger Syndrome, or P.D.D. than ever before). Yet the focal issue seems
to
> be "Where is it coming from and how can we 'cure' it!" What about "What is
> being done to provide services to these individuals so that they can be
> productive, happy participants in our society?"
>
> I am among those recently diagnosed on the mild, high end of the spectrum.
> Like Temple Grandin, I have found my creative "niche" and am quite
successful
> within that small niche. Years before even suspecting that my social and
> language processing struggles were because I shared characteristics with
> those on the autism spectrum, I instinctively sought out vitamin therapy,
> auditory training, vision/light therapy, homeopathy, sensory integration,
> Irlen lenses...most of the avenues that parents take looking for help in
> easing the stresses that their children with autism face. Each brought a
> measure of relief, but, despite my "efforts", none of them brought a
"cure!"
> In fact, it wasn't until I discovered why I found the world so confusing
and
> overwhelming, and learned to appreciate the person that I was meant to be,
> that I found the peace and happiness that I could never find trying to be
> "like everyone else."
>
> I'm not trying to say that research into the causes of autism isn't
warranted
> in light of the dramatic increases in those with the diagnosis...but not
if
> it means diverting attention and funding away from the needs of the rising
> population it targets. I work in a school system. I've witnessed the
increase
> in children diagnosed on the autism spectrum, from mild to severe. I've
also
> witnessed, more times than I would ever wish, children on the spectrum
> lashing out behaviorally against a world that is not meeting their needs.
> When these same children are placed in an environment that is respectful
of
> their hypersensitivities, provided with visual aides which help them to
> understand the verbal communication bombarding them, provided with the
> structure and consistency they need for a secure emotional base, and
helped
> to learn via their strengths not their areas of weakness, they settle down
> and happily learn. These children don't need to be cured or pressured into
> conforming. They need to be taught and communicated with in a manner that
> respects them as persons and helps them to learn how to become respectful,
> participating members of the society in which they live. An area that is
> woefully lacking in support in the school system is the teaching of
social,
> independent living and work skills this population needs to succeed. I see
> teachers and support staff working desperately to meet these needs, but it
> takes more than their efforts. It takes funding to provide the space,
> materials, staff and personnel training needed to make these changes. Once
> those on the spectrum are out into the world on their own, most still need
> some form of support, especially relative to living accommodations, job
> counseling, and social/emotional support. Parents and siblings of children
on
> the spectrum need support too. There are resource groups and centers
> desperately trying to fill that need as well, with very little funding
> support.
>
> Research into a phenonmenon that society finds perplexing is notable. It
is
> how society learns and grows. To direct money into research and ignore the
> desperate need for help in educating, training and supporting the
population
> being "studied", and their families, doesn't make a lot of sense. ARK's
cry
> for their rally is to "Hear Their Silence." There are many high
functioning
> individuals on the spectrum who DO have voices, who DO see and understand
the
> needs, and who would like to be heard as well! "Hear OUR voices!" Please.
>
> Sue Golubock
>
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