Get Your Message to Researchers, Clinicians & Educators

[Guest guest]

Hello, I'm a 56 yo autistic savant. I was not diagnosed until I was 52. For the

30 years prior to that, I was diagnosed with numerous other psychiatric and

mental illnesses, in addition to a seizure disorder. I even spent lengthy stays

at Boston Beth Israel and NIH back in 1986, but, already 30 years old and being

seen for something else, none of these wonderful doctors considered autism!!

That's not the primary reason for my post here. What's past is past for me, but

I hope to prevent such mistakes and ensuing medical traumas that happened to me

from happening to others like me now or in the future.

I submitted a proposal to present at the upcoming AUCD (Assn. of University

Centers on Disabilities) Conference being held in D.C., November 6-9. I had

originally submitted for a lecture-type, workshop presentation; however, they

had 200 submissions for 35 slots, so I was asked to participate in one of the

110 poster sessions, which includes roundtable discussions with similar subject

matter posters.

The topic of my proposal and abstract is " Using Historical Knowledge of

Individuals' Disability Experiences in Collaborative Clinical and Research

Environments to Improve the Odds Towards Long-term Epidemiology " . Since my

original presentation was going to include a few personal experiences and more

theoretical and philosophical discussion rather than be data driven; a poster

session is a totally different delivery presentation. Since I won't be at my

poster booth the entire time the posters are accessible to the attendees, my

poster(s) must be able to speak for themselves the message I want to get across.

University researchers, educators and clinicians usually think only in terms of

facts and data and that is what they are going to want to see. Therefore, I need

your assistance, and that of anyone you know with ANY kind of disability, as I

am speaking for ALL people with disabilities and not just those on the autism

spectrum.

Since time is (VERY) short and I'm still frantically trying to figure out how

I'm going to finance this trip without expensive payday loans (I live on a

limited SSDI income), I need to ask for your help. I have designed a very short,

one page survey of mostly yes/no questions and 3-4 brief explanation responses

that will help generate posters with the pretty data-type info, besides other

info I intend to show depicting my philosophical reasoning behind my topic. Time

is of the essence. I need to get these surveys out and back by OCTOBER 10th, so

I can tally the data, analyze and build the graphics, build the poster and ship

to the hotel in time for the conference.

In short, the idea behind this presentation is to get the researchers,

clinicians & educators (who are NOT disabled) to use disabled individuals ON

their teams, and not just as guinea pigs, to understand and develop therapies,

diagnostic testing, and technologies that will make our quality of life better,

rather than more difficult, stressful or traumatic.

If you would be willing to assist me with reaching the very people who have a

great influence in our lives (they influence politicians, too), please email me

for a copy of my survey to complete, or if you'd rather, I'd even be willing to

have anyone email me with negative experiences you've had in school, a medical

or therapeutic clinical situation, or as a research subject before or after

being diagnosed with your disability (spectrum disorder). In addition to the

survey, I'll attach a copy of the one-page abstract I submitted outlining my

proposal. I've been trying to attach my files to the group " files " section to

make it easier to preview and decide whether you wanted to do the survey, but my

attempts to get the files to upload have been futile and I've given up.

This is the start of what I hope to be many more conference presentations

advocating for disabled, but primarily adults on the autistic spectrum. I may

have been selected as a token disabled for my poster session; I don't know. They

do know I'm an autistic savant. I want to try to knock their socks off (and, I

won't lie, maybe win one of the awards voted on by the attendees).

Whatever, any and all help will be appreciated, and my apologies for getting

this out so late, but it took a while for the shock to subside after receiving

word of being accepted, then re-strategizing my delivery, and getting a survey

together.

Michele M. Newman

special.savant@...

P.S. This survey can be completed whether you are the disabled person or the

immediate caregiver of the disabled person.