ASAN applauds congressional letter urging self-advocate incl

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AspieUtah
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29 Oct 2014, 11:33 am

ASAN applauds congressional letter urging self-advocate inclusion
http://www.autisticadvocacy.org/2014/10 ... -inclusion

Quote:
The Autistic Self Advocacy Network applauded five leading congressional champions for autism services this morning for authoring a letter sent yesterday to the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH). The letter, signed by Rep. Jan Schakowsky (IL-9), Rep. Tammy Duckworth (IL-8), Rep. Kathy Castor (FL-14), Rep. Jackie Speier (CA-14) and Rep. Paul Tonko (NY-20), expressed concern with lack of representation of autistic people in programs funded by the Autism CARES Act, recently passed legislation governing federal autism programs.

The letter notes the severe underrepresentation of autistic people on the Inter-Agency Autism Coordinating Committee (IACC), which is responsible for overseeing all federal funds used on autism research, and in federally-funded programs on autism and other intellectual and developmental disabilities. The letter also expresses concern over the disproportionately small percentage of research funding that focuses on quality of services (2.4%) and adults on the autism spectrum (1.5%)....


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


PlainsAspie
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29 Oct 2014, 1:39 pm

I'm glad to see there are at least five members of Congress listening



AardvarkGoodSwimmer
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29 Oct 2014, 1:53 pm

Well, we've got to start somewhere. Okay, in time, I think we will need to build our own organizations similar to ASAN, but also doing our own thing. I mean, it's advantageous having a variety of organizations.

To disclose, I'm a member of ASAN, but not really active. To the best of my knowledge not much is happening in Houston.

'We are all middle-functioning.'

I love that as a political statement. And it applies to me. I've done good at some jobs, good at some classes, not so good at others. And I could use some help with tasks of everyday living, like calling my bank, insurance company, catching up on my taxes. And I don't mean someone preaching at me, I mean volunteers helping with the leg work.

And another thing, we need to stand in solidarity with our less verbal brothers and sisters. I mean, quote-unquote low-functioning persons are welcome to join and participate with Wrong Planet. But in point of fact, our membership might be a relatively low percentage of less verbal persons. So, we don't want some elitist deal where we just speak in favor of more verbal persons. We want to speak on behalf of all people on the Autism Spectrum.

So, this letter is a good step. But we shouldn't overdepend on any kind of professionals or leaders, even really good-hearted ones. We're going to need to do a lot of this ourselves, even making mistakes along the way, it's all texture, we make the mistakes, we keep moving forward.