All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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12 May 2010

AASPIRE Healthcare Study 1

AASPIRE's new survey compares the healthcare experiences of adults on the autistic spectrum, non-autistic adults who have disabilities, and non-autistic adults without disabilities. There are two main goals for the survey. Goal one is to see if there are differences in how people feel their healthcare needs are being met and how satisfied they are with their care. Goal two is to compare the barriers to healthcare for the three groups to see if there are differences in the types of things that make it hard to get health care.

In the second part of the study, AASPIRE will conduct in-depth interviews with about 30 adults on the autistic spectrum. The main goal is to get an in-depth understanding of autistic adults' experiences and recommendations about healthcare, including examples of what worked or did not work and what they think would help them get better healthcare. If eligible, you can choose to participate in an interview via email, online chat, or telephone.

Participate in a New Gateway Study

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab have created the Gateway Project. The project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance.
Gateway studies address topics such as well-being and problem-solving. A new AASPIRE Gateway study focuses on the healthcare experiences of autistic adults and adults with and without disabilities. AASPIRE expects to use the information learned from this study to improve healthcare.
graphic  representation of the preceeding paragraph
To participate in the AASPIRE Healthcare Study and any of the Gateway studies:

  1. Register for a Gateway account at the Gateway homepage http://thegatewayproject.org.

  2. Take the online Gateway Survey. It will take about 20-40 minutes to complete.

  3. Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.

  4. If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.

  5. After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.
graphical  representation of the preceeding five steps
If you would like to learn more about AASPIRE or the Gateway Project, you can

04 May 2010

Breaking Boundaries: The Art of Alex Masket

This film has been accepted to the Berkshire International Film Festival. View and vote for this awesome documentary by clicking here (scroll down to Breaking Boundaries)!

Breaking Boundaries spreads a positive message about autism that is free of fear-mongering and pity, a terrific way to raise autism awareness.

Dr. Kathleen Hull of Rutgers University spoke eloquently on the subject of autistic communication, expression, and humanity. She put it well by stating that instead of pathologization of autism, why not explore it and discover how autistic individuals see the world? This idea is fundamental to education. Why not approach autism as a theme and open our minds to ask what it means to be a human being.

As mentioned in the documentary, Alex's nonverbal nature has forced the art community to question standard communication, as his artwork is deeply articulate. Alex's communication and language is visible. And it teaches us that verbal ability is not linked to our intelligence or to our ability to communicate in powerful ways.

Alex's mother made an especially poignant statement by expressing that Alex has spent enough time trying to be who everyone else wants him to be. Now he is showing us who he is, as in: This Is Me.

Elesia gives this film two thumbs up! What a wonderful message. What a wonderful world. What a wonderful way to reinforce the concept of a social model of disability.

Check out Alex on Facebook by clicking here.

You may peruse Alex's Photo Gallery at his website (www.alexmasket.com).

World Autism Interviews: Spacey Hippie/Portland, Oregon

E: You are self-diagnosed as being on the autistic spectrum. What do you feel are the main barriers that prevent self-diagnosed autistic individuals from gaining an assessment if they wish to pursue a formal diagnosis?

Spacey Hippie: the main barrier is: i don't know who to ask. one of the questions i have is: where should i go, who'd be best? i have the hardest time finding out where to go n how to get there

i've taken a few autism tests online (scored as expected, just over the line) but that's not accredited, it's only a guide: like astrology (colloquially, entertainment only) legally you can't take it to anybody

mostly what i've found is absolute nothing: as if it's all in my head. and that's the real barrier: what you get back from the world is the same as if everybody's like that, cuz no one has the authority to say: yeah, here's what this is, n now we're gonna give ya what ya need (n then knowin whatever that is already as they're worthy of that authority) n often no one wants to speculate on any subject involving empathy so they're either... really for it... or refuse to have an opinion...

n that's if you have health insurance which i do, from being on disability... but if i didn't have that, there'd be no way...or i'd have no clue

the biggest barrier is someone like me is... powerless, uninformed

E: You are diagnosed as agoraphobic. What unique challenges do you face when pursuing assistance and services as a person who is agoraphobic and autistic?

Spacey Hippie: well, first thingy is: people don't believe in it... or they have no sympathy no understanding comprehensive compassion... n don't have to

cuz everybody feels a little social anxiety, n they think that's all it is... n that i just simply refuse to get it... n therefore, i'm bein a big baby... at which point, no respect for me... so it's a form of bigotry... totally... n why am i so nervous all the time? i dunno, yer job requires dispassion?

my brain actually shuts down... i become intellectually disabled, i lose half my IQ: forget how to make change, tell time n then i get taken advantage of easy... so now we know why no one was acknowledging... n now i'm bein paranoid

where my autism kicks in (n it was there from the start) is: i can't deal with corporate... i can't handle a phone call... objection: pressure

n in order to get help with that that's just what i have to do... which i'm no good at... n it damages me, mere attempting... n little thingies, like sitting in the waiting room for 45 minutes filling out forms... dude, i can't handle that... tough, too bad... only option... n then what the appointment or phone call... or runaround turns out to be... (and i knew it)

so there's no avenue set up for me to follow... anyways it... is a fruitless endeavor, no solution possible... but no one will admit they don't have every answer i could ever possibly need initially... n corporate = zero flexibility...

but just that right there: that i can be so easily dismissed... they know i'm a sap, or too silly... so therein is sufficient auto-irony (n society creates its own satirists)... but that system is not designed to target n fell people like me, is it? it's just we're a minority...

i need an in home care worker... n not like an elderly or physically disabled person (i can do my own laundry n dishes) but it's such an abstract concept that people don't hafta understand it if they don't want to... no one's ever heard of such a thing... i go away feelin silly, which is my problem being so alienated...

frustrating, desperation n then i become too absorbed in it n think "man, my life is such a mess" ...and i really need to do something about it, but i can't, or not well enough, so i fail... but there's nothing else to do... if i become unable to do anything, even just watch tv... debilitating... whatever my affliction, i feel like i'm in prison

E: What do you feel is assumed or misunderstood about people who are autistic as well as agoraphobic?

Spacey Hippie: seriously, no one knows what agoraphobia means... it's from the greek... fear of the marketplace... crowds, basically... being around people is associated with...things going badly...

n as for autism... if you think of a savant, you know there's something missing... i think it's confused with Tourettes and such, but society so pushes individuals to excel... n justa fit in... that we forget that the so afflicted are not these like rare anomalies, not like dots on a map... some static on the species, or people missing a circuit... it's more of a gradual thingy n those with it only a little... learn to hide it, compensate... even never know they have it... n those of us who can't do that... that's one of the functions we're missing

n if it's a really super ordinary thing, like agoraphobia... going to the store, going out to check the mail... my friends don't understand... they think i'm... whatever... being silly, extraordinaire...

i'm the guy who can't function without an assistant... who never made enough money to be able to afford one (some people need glasses)... and on needing an assistant: there's a million people on this planet who can solve this problem in 10 minutes, i need to talk to one of them for about 10 minutes

E: What is something you would like people to know about both autism and agoraphobia?

Spacey Hippie: to be without wisdom or reason is both unwise and unreasonable

n here's the part where i say, "we rule," or, "we rock" (n some of us do, back n forth... it's what we do)... n i don't mean that disparagingly... n yes, funny, but in the nicest possible way, that maybe many people really don't even see... we needta be looked after... n more'n jus put inna box, ok?

(on Fraiser, the other day) Freud said "we need 2 things to be happy: work and love" ...translation: something to do n someone to share it with

E: What keeps you going when life overwhelms you?

Spacey Hippie: Dilbert sez: the cure for loneliness is feeling like yer being listened to... getting someone on the phone is usually the highlight of my day... especially someone i know... or someone who can help me

i feel like i'm the only musician in town that doesn't have anybody to jam with (that wants one)... i'm a musician, i jam a little... but ya hafta play well... otherwise it's embarrassing... i should play daily, but it's hard to when yer depressed...

like, what i did just now is: dishes (add house cleaning to accomplishments); and it'd been pilin up for a coupla daze, n my once in awhile scrub out the sink didda good job, hooray... now i feel like jammin...

E: Tell me about your comic Dudeman.

Spacey Hippie: i should pack the whole thing up n label it: "things you tell liars" ...this is what inspires dudeman episodes... all the frustrating things you think of, that need to be said, and often aren't:

wow, you get to be totally be like that n no one stops you?

izzit that you want me to... guess?
izzit that you want me to... guess...incorrectly?
izzit that you want me to... keep...guessing?

E: Thank you for this interview.

Click here to check out Dudeman. Click here to visit Spacey Hippie's website.

01 May 2010

IACC Appoints Ari Ne'eman of ASAN

Interagency Autism Coordinating Committee (IACC)

The Autistic Self Advocacy Network applauds Department of Health and Human Services Secretary Kathleen Sebelius' appointment of Autistic Self Advocacy Network President Ari Ne'eman to the Interagency Autism Coordinating Committee (IACC), which is a Federal advisory committee that coordinates all efforts within the Department of HHS concerning autism. ASAN has given regular public comment at IACC meetings and looks forward to continuing to be an active part of the IACC process.

To learn more about the IACC, visit http://iacc.hhs.gov/

A news release has been posted on the HSS website:

Related articles and blogs: