FROM DIAGNOSIS TO MY CURRENT CIRCUMSTANCES
By Mr Coffee
I was diagnosed with Aspergers
Syndrome on April 4, 2001. My hobbies include computer networking,
and locomotive air horn collecting. Some other interests include
boating, snowmobiling, skiing and bicycling. These are only interests,
as their expense falls beyond my current budget.
I currently receive housing assistance and social
security for income. I am also working with the Department of Vocational
Rehabilitation in Michigan to gain some employment in the transportation
The Dakota County Department of Human Services
in Minnesota contributed greatly towards equipment needed to help
develop my Autism forum website (www.autismforum.net)
originally. I continue to maintain it with my own funds today. Much
of this is accomplished by work I have done setting up sites for
others. I credit my former Social Services agency for providing
benefits to make it considerably easier and more affordable to live
during times when my income was limited.
I think it would be good to give an account of
my history at this point. Actually, I may consider this as a short
account of "my life story" so to speak. I tend to have
this amazing ability to remember very early parts of my childhood.
Although I cannot remember the day I was born, I can perhaps go
back to when I was around six months of age and was learning how
to walk. That was over 40 years ago. But really, no truly significant
events happened until around January of 1965.
Around that time, there was a big growth on my
neck and I had to go to an emergency room. I found myself wedged
between what looked like a couple mattresses, and I felt some severe
pain. I kicked, and I screamed considerably. They were holding me
down, while placing an ice pack in the swelling area. And of course
I was very upset and violent. Their efforts to sooth me seemed in
vain. After all that ended, I ended up in an oxygen tent.
The pain was gone. And to be honest, at that point
I was very comfortable. I was under no pressure, and the staff members
appeared very nice. My stay lasted maybe a week. I had no desire
to leave, and definitely did not want to go back home. I was taken
out of the real world, and placed in a very sheltered environment
temporarily, where all of my needs were being met, and I pretty
much got all the attention I wanted. It left me with an appreciation
for the medical community. My heart goes out to all those nurses
and professionals who were so kind to take care of my needs regardless
of my treatment of them at the time.
I think most of what caused me to not leave that
facility had to do with sensory
integration issues. The coloration, lack of distractions and
sudden movements, reduced noise, and other factors had a calming
affect. I think the experience was somewhat euphoric. This could
have been a feeling similar to what Temple
Grandin would experience from use of specially designed mechanism
(hug machine) that
would generate pressure, or weighted vests worn voluntarily by some
others. Except the benefits I received were from a quieter, more
genial environment rather than weight or pressure.
Fascination and fixations
Over the years, I proceeded on to the school system,
and later drifted from job to job after achieving an associate's
degree. Most of my school career was met with some difficulty. In
middle school, I was referred to social workers and psychiatrists
numerous fairly often. One instructor could not understand why I
could not drift off of a subject, and why I had such fascinations
on certain subject areas, but not others. One example was where
I was fixated at a textile shell, and could not get over the fact
that the creature that once inhabited it was actually a poisonous
invertebrate that eats fish, and would kill a human being if they
got stung by it.
As I got older, there was considerable pressure
to push my limits. I wished many times that I was back in that Hospital
where I could be insulated from the problems I was experiencing.
In May, of 1981, I graduated from High School through the adult
education program. Then I moved to New Mexico to live with my grandmother
and find work. Of course, finding work did not prove to be easy
but somehow I managed. I was later able to purchase a car, and started
to attend a larger university.
Employment proved difficult to retain for any
reasonable period of time. Work performance was no so much of an
issue as were relationships with co-workers. Most of the time, I
would start a job and perform up to and beyond the expectations.
I would generate some good performance appraisals. Later, problems
would develop with co-workers and my employment history would start
showing reprimands. Terminations would usually result, and the cycle
would start again with another employer. This happened with several
janitorial jobs until I decided to work in a different field. The
interpersonal problems continued, however, with changes in employment
occurring at least once every two years and often more frequent.
The last job I had ended in 2002.
Autism is a very difficult disability to live
with. Over the years, I have drifted from job to job. I was never
able to pay off my educational loans due to the lack of employment.
Not even janitorial jobs would work out. I was usually let go from
those positions after the third month of employment. I think the
best job I ever had was that of a school bus driver. Some of the
best times while under that type of employment was when I could
spend time with a group I would transport, and have some good social
interaction with the students and their leaders. Unfortunately,
I parted that occupation when co-workers at the bus garage did not
like my being involved with them or their company.
Understanding and Accommodation
So here I am, writing up my web site (www.autismforum.net)
for the world to see, in hopes that there will be ways found to
benefit others before it's too late. If my needs were known, and
met during the time after I left McLaren General, then chances are
I would not need to write up this website, because all of my tools
would be used and implemented from day one, and I would not have
shown any signs of this disorder. My employment would have been
more stable, and I would most likely have a family and a nest egg.
We must learn how to meet the needs of people
with Autism at an early age, to provide them the tools to cope with
their disorder, and to teach them how to function so they can develop
as normally as possible. Autism will never be cured, because it
is genetically based. However, a broader understanding and a willingness
to reach out to those who have it will provide society with a more
capable and productive population. It is up to you!
Click here for the full range of Asperger's and autism fact sheets and personal stories
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read more personal stories from parents of children on the autism spectrum, and from adults living with Autism, Asperger's syndrome
and other Autism Spectrum Disorders
This story is reprinted with the permission of
Mr Coffee who organizes an Asperger's syndrome forum at www.autismforum.net