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 sector.

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.

Some History

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.

Sensory integration

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 difficulties

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 at www.autism-help.org
Click here to 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