independent living
on the autistic spectrum

submitted posts from the Advocacy forum
published with permission of the authors

Marla Comm: Mainstreaming doesn't always work

Dear Susan:

I want to thank Scott Wade for coming out with the truth few are willing to face. Society wants to see adults with high functioning autism leading independent lives, working full time, marrying, raising children and developing social lives and applauds all who make these achievements. Scott reminds us that not all high functioning autistics do so well and that many lead lives of poverty and desperation.

I am one of those less successful ones and can relate to everything Scott wrote. Although I have a normal IQ and above average math ability, I am severely hampered by social skill deficits, coordination problems, short attention span, low frustration tolerance, sensory integration dysfunction, inability to handle change and co-morbid Tourette's Syndrome and personality disorder. All these impairments make merely getting through the day a major feat.

In his recent letter Scott discussed the obstacles most autistics face in the workplace and admits that many with the condition are unable to handle work. I happen to have a job, but only because of a string of fortuitous events and a workplace willing to adapt my working conditions to accommodate my special needs. Under normal circumstances I'd be unable to get or hold down a job. In the beginning, when I worked as a nursing aide and didn't work out, the nursing home whose medical library I now help out in part time wanted to throw me out the door. Thanks to the powerful union I belonged to, I was given a second chance in a different position. When that failed, management gave me a third chance and created my present job as medical library assistant.

Although I succeed at this position, I owe my ability to keep it to the special accommodations made for me. Unless I have a really urgent task, my supervisor lets me break up my work day into shorter sessions when I'm very restless or too upset to concentrate. I live a couple blocks away, which makes it possible for me to leave for breaks when I need them. She also lets me and even encourages me to hand over tasks that require skills I'm weak in like dexterity and interacting with people. A co-worker acted as my workplace advocate and found someone else to take over when she left for another job.

Despite the special accommodations, working takes a lot out of me. The most I can handle are a few half days a week. The peripherals like making the lunches and choosing appropriate clothes take a lot of mental energy. Although some staff members treat me well, others tease and mistreat me. As understanding as my boss tries to be, my need for space and solitude make working for a superior hard and tiring. When things get busy and I try to work a bit longer to finish an urgent task, my nervous system shuts down. Even on ordinary days I feel so worn out and cranky after work that I have to be left alone and can't face the countless self care tasks waiting to be done. Like all workplaces in the nineties and beyond, mine has been hit with cutbacks and is in a state of flux. Dealing with the daily changes in work environment, erratic workload, changes in tasks and procedures used to do them, department restructuring, new facesand supportive staff leaving drains me. As interesting as my job is and as much as I enjoy some of the tasks, I get days when I feel so burdened with other problems that I wish I didn't have to work.

Although Scott wrote mostly about problems getting and keeping jobs, employment is just one of many hardships mainstreamed autistic adults face. Working may be difficult, but my biggest problems occur outside the workplace. Coordination and organization deficits turn the self care and household chores that others take in their stride into time and energy consuming feats. It's frustrating to spend hours on them, do them over and over, and still not get them done properly. When bad weather makes it impossible to use my bike, I can't get around because I don't drive and get severely motion sick on buses. Complicated tasks that require planning, decision making and dealing with people are beyond me. Every day is a battle against boredom because I have limited interests, am unable to learn to like activities I don't enjoy naturally and live in a city where it's often impossible to do the few things I do enjoy. Like many mainstreamed people with disabilities, I get teased and mistreated.

Instead of getting easier, life is getting harder with time. The world of the nineties and millenium is especially difficult for me. Coping with the uncertainty and instability of today's world requires the flexibility and adaptability I lack. Though I'm computer literate, the rapidly changing technology confuses me and throws me into overload. I can't process information quickly enough to keep up with new inventions and upgrades and don't have the money to buy the ones I do want. As a disabled person on a fixed income, I am especially vulnerable to the effects of today's cost cutting economy. Cuts make it hard to get and keep services. I now have problems affording food because stores no longer sell seconds for reduced prices and feature only junk food in weekly specials. I can't even shop for food without breaking down into tears and am often reduced to living on candy.

As if life in mainstream weren't difficult enough, I have to struggle with it alone. I have no real support system. In denial from the day I was diagnosed at age 3, my parents threw me into mainstream without providing the support and guidance I needed to cope and never planned for my future. They never even worked with relatives or family friends to create a support network for me. Out of duty they helped me with some of my needs and my father continued to do so after my mother's death. But when they retired they started travelling frequently and left me with no one to call when I needed help. My father still goes away often and is even considering spending winters down south without giving any thought at all to finding someone for me to turn to when he's gone. Fall and winter are the times of year I feel my worst and need the most assistance.

Finding practical support outside the family is next to impossible. Like many more severely affected autistics, I don't have friends. Even if I did, asking them for help would be wrong because I can't handle the reciprocal give and take friendships involve. The co-worker who used to be my workplace advocate cares about me but is too busy. Other people I know are also too busy for me and many don't even understand autism. Even if I find someone, all I'll be able to count on is a short term solution because Montreal is an undesirable place to live in and people leave the first chance they get. Getting government funded community support, which was never easy for me, is impossible in these hard times.

Most people don't even believe I need support. They think that just because I work, keep up with personal hygiene and live on my own that I am coping. They don't realize how many unmet needs I have. Nor do they realize how hard I have to work just to get through a day or how poor my quality of life is. After spending years trying in vain to get support and struggling without it, I am burnt out. My nervous system is so worn down I can't push myself to work on skills or hold in the problem behaviors I'm prone to. My self esteem suffers repeated blows as I watch myself fall further and further behind, fail in most things I do and cope so poorly with the stresses of daily living. I am also becoming increasingly rebellious, negative and disillusioned with the world. Although one would hope that exposing me to changes and adversities would teach me how to adjust, that's not happening. Each change just leaves me unhappier.

As I reflect on my past and look toward my bleaker future, I think of what Scott wrote about mainstreaming and have to say he's right. It doesn't always work. You can't simply throw autistic people into the community, leave them to fend for themselves without support and expect them to make it. While a few succeed and are happy, many like me suffer. Once again, I thank Scott for telling readers what life is really like for many autistics living in the community.

Marla Comm
Montreal, Canada

(back to contents)