04 May 2010
World Autism Interviews: Spacey Hippie/Portland, Oregon
Elesia: 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
Elesia: 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
Elesia: 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
Elesia: 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
Elesia: 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...
Elesia: 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?
Elesia: Thank you for this interview.
Click here to check out Dudeman. Click here to visit Spacey Hippie's website.