My ASH (that's acronym-speak for autism spectrum husband) got himself "dismissed" from the latest permanent job 30 days ago.
At least this one ended with one month's severance pay. Ask me how long it took him to snag that position -- umm, one year and 16 days. Welp. The severance pay isn't gonna hold out, is it?
In a karmic attempt to make my day complete I opened up the ole Gmail inbox and something unnerving came in. It was kind of miraculous, actually, since I hadn't received a freaking email, newsletter, update, follow-up call or any other form of caring contact from this organization for more than seven or eight years.
I gotta admit that I sarcastically mouthed the mission heading, "Celebrating Neurodiversity".
My acerbic wit and hilarity in the midst of dire circumstances seem to be evading me this year.
Anyway, I got over my pissy melancholy long enough to look further down their positivity-laden newsletter. Again, you saved my damn email addy all these many years, AS of Alabama... why did you suddenly send me this email after almost a decade of silence?
Here's the list of article links I found embedded in that email --
Consumer's log:
Wow, they've got several offices now... their headquarters in B-ham, along with a South Alabama, Mobile office and a phone number for North Alabama.
Wait a minute -- a phone number for North Alabama but no office? I guess that's progress, sort of.
I proceeded onto the typo-riddled article intro about "Insurance for Autism in AL" I mean, gosh, that's just great news, isn't it, now that all 3 of my freakin' sons are in their twenties and I bet that legislation will really help with my husband's employer? Oh, wait. He's unemployed again. As a matter of fact, he has not had employment-related insurance since uhhh, 1996 maybe.
Finally, I got reeled in by the "Roadmap to Alabama Transition Services: Guidance for Families" synopsis and I clicked that link with some gusto... this was the landing page:
I navigated right toward the third-row-down-left-column-"I-want-a-job" link. There, the Autism Society of Alabama graciously described in a one-page PDF document how if my autistic self or family member were/was a recipient of SSDI or SSI Social Security Benefits and between the ages of 18 and 64 years old, that I/they could qualify for inclusion in the "Ticket to Work" program. This long-published information is accessible on SSA.gov and I reviewed this info like, umm, around 2010, y'all.
Moving forward, with dashed hopes and little in the way of leftover anticipation, er, I mean illusions, I clicked on the next tab to the right -- "I Want to Live Away from Home", thinking fondly of our 20-year-old autistic son who doesn't have a job or his driver's license yet, let alone plans for independent living.
Feast your eyes on this page image below:
I tried clicking the blue type, hoping it was a hyperlink, but Noooooo! There's absolutely nothing but a blank page with a heading.
Why did they bother?
That's it, folks -- might as well get your Ruby Slippers on and click those heels. Yessiree -- there's no place like home, apparently, because AS of Alabama can't even manage to cough up a single shred of descriptive data, nary a link for all of us out here, desperately waiting for some help with that road map. There ain't gonna be no information for all y'all Alabama auties who don't wanna stay at Mom and Dad's for the rest of your adult years.
____________________________________________
Here's what I want to point out :
1. I'm almost done with the unveiled contempt, or at least, I'm trying to settle down here.
2. I used to 'believe' (think fairies, Peter Pan, clapping, etc.) in our Autism Societies, even having been designated a short-list Governor appointee for an Autism Task Force in our state.
3. I even started a fledgling non-profit agency 11 years ago to address the needs of transitioning teens and adults. Until my life was altered by Traumatic Brain Injury, I was quite conversant and knowledgeable about options and alternatives out there. Our state had next-to-nothing back then regarding available adult services and perhaps only a pittance more now, all these years later.
4. AS of Alabama, get a clue: it's not enough in 2018 to get some internet copy-jockey to post a couple of web pages on Road Maps by slapping up some really OLD and INEFFECTIVE links. Such haphazard and lazy tactics can't possibly justify your lofty mission statements and certainly doesn't reflect appropriate balance of commitment when compared to your FUND-RAISING efforts.
5. Autism consumers, puh-leeze don't be fooled by such BS techniques, either. Numerous government-dole enrichment schemes utilize similar dime-a-dozen formats that thousands of grant-funded, non-profit 'agencies' use to engage in FAKE or barely realized service-sector programs, while guaranteeing themselves a substantial paycheck.
These agency 'storefronts' develop mission statements and purposes, hurk-up some grant proposals to conduct a single survey or create a whitepaper with some snazzy infographics, replete with demographic data justifying their hypotheses. Then in a final travesty of justice they complete their 'research' and post their results on a website that appears they paid some hoodie-clad, Zuckerberg wannabe IT dude to build for them.
Hey! At least that means occasional employment for one of our own.
Sadly, somebody gets to pay (in spades) for autism agencies engaging in such flaccid and spineless web-posturing. This is an egregious offense to the dire needs of families and individuals affected by Autism Spectrum Disorders.
I wrote about my plans and dreams to serve autistics in 2007 -- I had a comprehensive and descriptive website built and published in 2008, with numerous links and information regarding QoL (service-sector acronym for Quality of Life) for transitional teens and adults on the spectrum.
I provided ad hoc information and referral for anyone that contacted me for help.
By the way, I never got paid a red-cent for my services.
Oh, and I almost forgot -- I created two additional blog sites. Here's an image from the inaugural article of my Live with Autism blog --
Road Maps Sharon Howarth blog Nov. 2007
Yeah, that's right. I offered my road map 11 years earlier.
AS of Alabama, how come it took you so long to post yours?
Here's their 2-page whitepaper (!) at the "I Want to Make My Own Decisions".
WARNING!! ASD self-advocacy alert: this is completely stigmatizing and offensive.
Autism Society of Alabama whitepaper
Even worse, here's my screen capture for their "I Want to Stay Safe" resource link page.
Note that such an important subject query leads to another BLANK PAGE.
Sigh.
Oh, just in case you think I'm being unduly hard on our state Autism Society, here's a link to my posted reply taking on the CEO/director of our American Autism Society a few years back.
Open Letter and Response to Autism Society of America President
And, here's my own humble infographic on QoL for adult autistics per recent demographics from several autism statistical sources:
I've given up clicking my heels and I can't afford to feed a service dog for a family member, let alone access health care or adequate housing.
I wish I was in Oz, right now.
