This presentation is about autism. Many of you are probably familiar with the word; others might have seen the movie "Rain Main" or perhaps you have heard about children who are non-verbal, scream a lot, and are severely handicapped and who will never lead an independent life.

These are the stereotypes. Autism is, however, a spectrum condition, also including some other labels such as Asperger Syndrome. Its aspects occur on a spectrum anywhere from mild to severe. While autistic people have lots and lots in common with each other, there are a great deal of differences between them also. The common ground, however, seems to be a significant social impairment that prevents us from using our abilities to the fullest, and makes us suffer a lot of community hostility. More about that later.

My friend Dean Walker and I are both "on the autistic spectrum". That is, we have a diagnosis of high-functioning autism. He is from Texas and and I am from The Netherlands. We met via the Internet; I will talk more about that later. First, let me tell you something about what autism is.

Except for the social impairment I mentioned, an important characteristic of autism is a different way of thinking. Autistic people tend to think very concretely and rigidly; some refer to that as "black and white thinking". We have trouble perceiving and understanding subtleties, or "reading between the lines". We also tend to have different kind of interests; we can dive very deep into one specific area such as computer programming, or trains, or even phone directories. We can "perseverate" on those a long time -- that is, go on and on about it.

One problem many of us have is with sensory issues. For many of us, it's as if the stereo is always set to its maximum volume level. We are ofen oversensitive not only for loud noise, but also for touch (especially sudden touch), and bright light. It's as if everything is continually amplified.

So what is it like to be autistic, you might wonder? Personally, I was not diagnosed until age 22, which was one year ago -- before that, my life was basically one big riddle. I was aware of being "weird" but not much else. My parents didn't really understand me, and I endured terrible teasing and harrassing at school, with no real way to address it, though a lot was tried. One who is perceived as "weird" and does not know why leads a very difficult life. Then, with the diagnosis came a lot of understanding of myself, and now I can adapt my life to my abilities and impairments. Also, my sensory issues, which for me are mainly tactile in nature, are now helped by Shiatsu massage.

Autistic people also often have special talents. However, few have the savant abilities that many of us know from the movie Rain Man. Our talents often do not make a very good dog and pony show, but include things that can be put to good use given the circumstances that work for us, such as: linear, logical thinking; an ability to keep things neatly organised; or a very visual way of thinking (often called "thinking in pictures"). The latter is rather common in autistic people.

People on the autistic spectrum can put their talents to good use in working with computers, which we have a natural affinity with due to our literal way of thinking. In April, Computer World printed an article about computer programmers who are autistic. While they have trouble getting by in the social working situation (and special arrangements often have to be made for that), they often perform extraordinarily well in fields such as this one.

Computers can also be used to get in touch with each other. The Internet is a very low-threshold and highly effective way to communicate with each other -- all you see is letters on a screen, and you respond by typing, so there are none of the difficulties associated with social interaction, which we are impaired in. For autistic people it has the special advantage that it works with those machines that we understand so naturally.

Dean and I thus started a group of people on the autistic spectrum, that works via e-mail. If mail is sent to the group, it's distributed to all its members. That is how we can meet and support each other, make friends, and exchange practical tips related to independent living with our condition. The latter is why the group is called Independent Living on the autistic spectrum. It is a small community of people spread all over the world, including North and South America, Europe, and Australia. Many joined with only a suspicion about themselves -- might my problems be somehow related to autism? Then, in the group they find this bunch of people who not only understand them, but actually have been going through many of the same things. For many, this kind of understanding was never experienced before, and thus the group has become a real lifeline to many of its members.

The group is divided in topics, devised by Dean. This division is quite compatible with our way of thinking and organising. Each topic gets messages related to it. Topics include social interaction, selfcare (hygi¸ne, etc), family issues, how to pass one's time (entertaining oneself), emotions, and employment -- and more topics relevant to independent living. On this group we have created many great insights about ourselves, and unfortunately it would take hours to expain about them all. For instance, many of us have trouble recognizing faces, and that may suggest that this may have some relation to the neurological differences relating to autism.

On this group, I have made lots of great friends. Some of them are part of the reason I'm here in the US, and I will see some of them in person shortly. The point of all this is: the Internet, and especially the group Dean and I started and others like it, are a great way for autistic people to form a community and end their isolation. Computers thus seem to be an essential instrument for autistic people to get in touch with others, especially others like us.

Once we had a community, many of us wanted to do something about the bad situation that many autistic people, especially adults, are in. Up til a few years ago, most professionals didn't believe that there is any such thing as high functioning autism, and autistics were believed to be only those children who are non-verbal and scream a lot. Hence, there must still be thousands of high functioning autistic adults out there, who do not know the reason for their problems, and whose life is still one big riddle, like mine was for its first 22 years. I know people who finally discovered their autism after 50 years ago, and who have circulated in the psychiatric circuit for decades, to no avail. What a waste of money and human wellbeing!

And that is why we started an advocacy effort based on the Internet, and we are attempting to reach out to the autism organisations and get them to do something for that forgotten group of adult autistic people who either barely manage to live independently, or who don't. We are in the process of making a joint declaration of our needs, signed by many autistic people on our group, and with personal accounts of their lifes added.

One upcoming part of this presentation is a personal account of one high functioning autistic woman -- Marla Comm, who is English speaking and lives in Montreal, Quebec, Canada, a mainly French-speaking region. She urged me to get the word out about herself and people like her.

My friend Dean Walker will now read Marla's personal account on her behalf. Then, he will talk more about the needs of high functioning autistic adults who try to live independently.

I am a high functioning but severely autistic woman struggling to lead some semblance of an independent life in a world not meant for people who are different.

As an adult living in the community on my own, I carry the same load of responsibilities as every one else. I work as a regular employee in a place where staff accept my limitations but where I nonetheless have to work under the same pressure in the same overstimulating surroundings as the other workers. Outside work there's the shopping, banking, making appointments, repairs and other duties. At home there are all the housekeeping chores to do: trivial tasks for the average person but monumental feats for someone whose hands and brain refuse to work together and who feels like smashing the whole place up simply because the texture of the kitchen counter irritates her hyperacute touch. With an income barely half that of others my age I grapple daily with the impossible task of putting the proper food on the table, paying bills that go up each time and meeting the new expenses dumped on me by financially strapped governments charging for previously subsidized services. When I finally get some free time after a demanding workday and chores that take so long to get done, I end up spending that time fearing for my life as I brave the dangerous crowds my few outside activities bring me into contact with. No matter where I am I'm exposed to the same frightening goings-on and talk that everyone else contends with. Last, but not least, there are the countless mean and uncaring people I confront each day. With nothing to shield me from them, I have to deal with the mistreatment on my own.

As if living in the community weren't hard enough, I'm also stuck in a particularly tough living environment: an overcrowded, rough city in a country that's one step away from breaking up and where it's hard to find anyone who speaks English. The seasons here are so erratic that merely coping with them uses up a good portion of what little energy I have. No matter where I live, the nineties are times of poverty and chaos. On top of all this I spent much of my life among particularly mean people. And with my parents denying my disability and bringing me up as if I were normal, no early interventions and an especially severe handicap complicated by Tourette's Syndrome and personality problems, I had the odds stacked against me from the start.

I not only have to manage in this forbidding environment, but have to do so without help. Try as I may, I can't get any. Service providers see that I'm suffering, not looking after my apartment properly and rotting away in that apartment with not enough food and nothing to do in my spare time. Yet they just sit there and let it happen. They may sweet talk me with their empty words of sorrow, but refuse to do anything because I'm a bit too functional to qualify for aid.

Asking someone like me to do all these things is like asking someone to dig a ditch with nothing more than a kitchen fork. After spending enough time straining to do a job without the proper equipment one gets worn out. That's what's happening to me. At the age of 40 I'm used up and on the verge of giving up.

Years of being poor and living in an ancient apartment where it's impossible to even get a comfortable temperature finally got to me. Even more depressing is the knowledge that I'll be spending the rest of my life in such conditions or worse. Nonsocial to begin with, I find myself liking people even less after years of being treated like dirt. I've grown so bitter and angry, my behavior, which should have improved with age, is getting more disruptive. Wanting so much and not being able to have it is also taking its toll. Now I'm so frustrated with unmet needs I care about little else. Patience is also wearing thin after spending years struggling with chores and not being able to do them properly. As the world becomes more complex and responsibilities even harder, I'm getting further and further behind. I'm so overwhelmed I'm on the verge of collapse. leisure time, which should be relished, is even adding to my misery. It's disheartening to be sidelined from the few activities I enjoy because of the dangerous kids who monopolize them.

I wonder how much longer I can go on like this. I dread what might happen to me if help doesn't come soon. I see myself becoming too disturbed to work and too apathetic to look after the few selfcare chores I can handle. It hasn't quite reached that point yet, but I feel myself going bit by bit.

If only someone could help me get the proper food at prices I could afford, help me keep the apartment clean, advocate for me when I run into problems with people, find me ways to do the sports I enjoy in safety and offer regular support when I'm upset, I'd be able to remain in society and not only continue working, but be even more productive and less hostile to the people around me. On the other hand, if I continue to left to rot away, I'll have no choice but go to an institution and be an even bigger burden on society.

Marla <mcomm@total.net>

Unfortunately, most independent-living autistics live miserable lives because of community hostility -- not ulike that which was faced by blacks and homosexuals beforer they had their civil righs movements. This problem has been casually mentioned in autism conferences, from time to time over the last twenty years. The mother of one such affected individual wrote quite q bit of mmaterial about her son's expeiences, back in '75.

Getting down to the present, we know one woman who has learrned to be grateful even for her loying job. Because of the low pay, she has to make do with a dilapidated apartment and pur up with sewer leakages. Her job skills have been recognized by her colleagues. But last I heard, she isn't any closer to getting a better job with better pay.

iwas arrested on a trumped-up charge and found nobody interested in helping me get the matter looked into -- even though there was obvious malfeasance. I tried calling Amnasty International and the ACLU, and there was no interest on their part. By contast, another autistic young man was brought up on a felony charge, after he threw his books down in front of a teacher -- same charge as if he had pulled a knife on her. His family knew someone in the local autism society who had a connection with the ACLU. And i short order, the chargss were dropped. Ah, the advantages of being in favor with the Establishment!

One thing we are defenseless against is malicious gossip. We need legal help in using the slander and libel laws to deter such conduct. Anything bad said about us is implicitly believed. And unfounded alllegations can ruin a person's life.

One thing we need is job help. There now are laws which say that employers must make reasonable accommodations for disabilities, but where will get the help needed, in order to enforce such rights?

As for frequent, unscheduled time off, I read in a recent article in the New York Times about schizophrenics needing it. We, however, wouldn't neeed any such thing, as long as we experience some improvement in acceptance as a result of doing well on the job.

First and foremost, we would need help in getting past the discrimiation against those who come across as "weird". Since we have trouble with the social aspwxts of a job situation, we'd occasionally need a mediator when a problem comes up.

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