Tuesday, September 4, 2012

Surviving the storm - when your CEO has autism

When this little grass roots company was established and formalized  it's primary purpose was and is to create "creative employment" for individuals with autism. 

For the most part,  people with severe autism are overlooked, under utilized and disenfranchised from the gainfully employed/happily employed working population. I have to sort this out by saying that in my own personal opinion - being relegated to do jobs that you detest or have no skill  set for - is not employment but busy work - intended to keep individuals out of trouble, and engaged (and not the worst case scenario by far), but don't our individuals with autism deserve free choice, fair options, diverse opportunities?

I pondered that question in my own mind many times. Could we as humans do the same job every day without some sort of burnout/fallout/stress induced illness, mental deterioration or a loss of joy?

I believe all of us verbally driven and socially appropriate individuals would answer with a resounding NO - we cannot.  However, we differ from our counterparts with autism - we have choice - they do not.

Have studies been done correlating  mental distress/illness or behavioral dysfunction associated with high stress jobs  - I believe more than likely,  and most probably funded by drug companies,  all would agree - job dissatisfaction and stress have a clearly circumscribed set of symptoms that accompany such daily dissatisfaction and mental fatigue.

So many individuals are on anti depressants and anti anxiety medications one has to assume there is a high level of dissatisfaction in many people's lives and a high degree of frustration, stress, boredom and irritation when subjected to  a less ideal than ideal job or work environment.  Couple that with lack of jobs in general and life becomes more difficult.

When we factor in the individuals with autism who are now turning 18-21 - high functioning - lower functioning with no jobs or limited jobs or jobs that they either have no skill for or interest in - I would believe studies would reflect a high degree of behavioral aberration in response to an unhappy, understimulating work environment.  But.... since they are now out of the school environment and have aged out of those sets of circumstances - no one tracks them and their response to  the employment situation/environment and stressors. Nor does anyone track the total lack of employment  and its stress factors on the young adult and/or the family caregivers. 

There is a learned sense of hopelessness and despair that I believe sets in with many individuals on the spectrum as they exit school - routines disintegrate, activities stop - life stops.

Despite being disabled many individuals with autism do understand what lack of  purpose feels like, lack of respect from familiar adults/teachers/job coaches   and/or lack of recognition of their unique abilities. They DO respond negatively to being unengaged/underemployed and most especiallly to not being given a chance to test their wings/try  new things and be praised for their work.  

Essentially young adults and adults with developmental disabilities exist in a vacuum. On a good day they may hear something positive from a caregiver or assistant, but for the most part it is a drudge to get through the day, they become overweight and understimulated in a very short period of time. They are rewarded with food, as it is the easiest and most portable reward and in no time they become more and more sedentary and bored. Boredom turns to destruction and destruction turns to institutionalization  and eventually the removal from their homes.

And so we come to our business, created for Andrew - an 18 year old with autism- with Andrew's interests and skill sets clearly in our minds.  We did it to save his life and we did it with no thought initially but to save his life.

Has this business made a difference in his life? YES.
Has he decreased his most difficult behaviors (self injury) in response to working in this company? YES
Has he become happier and eager to participate? YES.

This business is a tiny drop in an ocean of need - but it is a drop - and it is important.

We modify our expecations based on his demeanor on certain days, much like a real job environment - some days are more complicated and some days easier. We do use primary rewards at the end of his "shift" to reward a job well done, paired with social praise and his own internal motivation (he likes to complete tasks).

His smiles tell us we are on the right track, but we constantly adjust for this CEO with autism. Though he receives no pay check - he does receive in its place -  satisfaction, praise, interaction, and engagement. Our CEO calls the shots and we are more than happy to "listen."


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