Road Maps to Quality of Life : Detours?

I confess-- I do occasionally go back and read my own posts and I wanted to reference something I wrote way back at the beginning of this blog, in November, 2007.

"Finding the road map for living with Autism has been much more difficult. When Bruce was diagnosed, we were still using a dial-up internet modem at 28k, and navigating the web for support information about Asperger's Syndrome was slow and frustrating.

I did notice that most of the information was for parents. Everybody was encouraging parents to pursue early diagnosis and early interventions to help in educating their autistic kids.

And while I really appreciated the importance of this info, I felt left out. There was almost nothing about 'having an autistic husband' or 'how to handle the emotional isolation' that I was experiencing."    

  [link to my original article]

Today, I spent several hours scouring internet and phone, trying again, to find some help and appropriate autism services for my Aspie husband, Bruce.

I've  learned a lot this month--he is likely dealing with concomitant sensory disintegration issues as well as his more typical Asperger's-based unique talents and challenges. 

The Sensory Processing Disorder Foundation, capably explains sensory disintegration --

Sensory Processing Disorder  (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.  

[link their website here ]

 A great description as it pertains to the child-focused autism population. However, I would humbly suggest that the SPD Foundation might add "vocational failure" to their list of challenges in order to be inclusive of our adult autistics out here, who just happen to be grappling with a statistically devastating inability to maintain independence and basic quality of life for ourselves and for many of us, our autistic children.

Sad to say, ASD community, there is no Santa Claus, but we Aspies and Auties who do manage to go to secondary educational institutions, often get married , happily make and have babies, purchase or try to buy homes, make car payments and yes, we screw up our checking accounts, far too often.

My hubby knows about autism related vocational issues, as even with his two master's degrees and a doctorate almost completed, he still hasn't been appreciably employed in over 12 years. 

Well...that is unless you count his brief tenure doing repetitive contract work with the 2010 U.S. Census which lasted less than 10 weeks, or the three months of  'training' with a sales organization that never turned a single paycheck for him. 

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Warning!!Embedded Message to Governmental Agency: 

Yes, Social Security Administration, we did indeed, submit the paperwork 18-24 months ago, for all that voluminous "income" he earned, thus verifying for your agency that you should continue sending my husband's whopping $687 monthly disability benefits along with the government supplied Medicare/Medicaid insurance coverage that provides a bare modicum of medical service access to him. 

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Here are some sobering statistics to consider.

According to a National Foundation for Autism Research (NFAR) web article, the California State Senate’s South Counties Autism Regional Taskforce (SCART) reported the following findings:

“While the national unemployment rate is considered high at 9.5%, adults with autism have an astounding 90% unemployment rate,” said Chantal Sicie-Kira, SCART Co-Chair.

Sicie-Kira, said that SCART's objective regarding vocational issues is to inspire other organizations to recognize the benefits of employing such [individuals] as the autism population who are differently-abled.

[article link]

I appreciate their intentions and the fact that their organization gave an award to NFAR for their advocacy. 

But NOBODY, NOWHERE, ever mentions actual programs that get us substantially employed!

Currently, worldwide, there are a total of two, yes...I...said...TWO direct employment programs which intentionally hire autistics for their skills and strengths, on Planet Earth! With that said, going "boldly, where no man has gone before" is starting to look really promising, folks.

Think about it. The U.S. adult autism community's unemployment rate runs annually at over four times Greece's 21.7% for 2012! 

Perhaps the Auties and Aspies among us should riot in the streets and glean worldwide attention for our plight, just like the disgruntled EU citizens on recent CNN reports.

Oh that's right-- we can't because we're trying to adapt and fit into a world that already stigmatizes us from basic employment opportunities. Making a scene would just reinforce most HR departments' concept of us as histrionic, incapable introverts or noisy dullards.  

That's why this 'creatively-unemployed' author/advocate is reporting that the current lack of available employment supports and adaptive workplace opportunities, look strangely more like road-blocks than a simple detour.

Honestly, after 12 years of snoozing in the rest stop, awaiting the next leg of highway to be constructed,  I think we've all been patient for long enough. 

Instead, our lives read like this frightening fairy tale: the wolf is at the door, the house is blowing down and we need to evacuate through the back door begging extended family members to aid us, instead of waiting any longer for promised help to arrive, since it never does.

Don't forget this: the lack of employment and financial viability many adult autistics face negatively impact our access to the supports and services we need for our autistic sons and daughters! We're parents and caregivers, too.

This week, Bruce has yet another vocational rehabilitation appointment coming up. Just as they have done for over a decade, more paperwork will be shuffled through, signed, copied and filed to keep his case open, but we have NO expectation of any referrals, direction or new opportunities. 

It's not the agency's fault, nor his case manager's, but I've been feeling some resentment as I spend my 15-20 un-remunerated-hours-per-week scouring the web landscape for new programs or funding, to create any viable opportunity for us to move into a more secure middle-class-ability to care for our family . 

At least our case manager is still getting paid by the government-funding provided for my husband's vocational assistance appointment.