“You can’t just throw an Asperger adult into mainstream”
January 14, 2007 by Kristina Chew, PhD
Filed under Health
Marla Comm left this comment on my post A really rough question about Nikki Bacharach’s taking her own life last week. Here are the first and last paragraphs of what she wrote:
I have been struggling with high functioning autism for all my 50 years. My normal IQ and acquisition of language place me in the high functioning category, but I am otherwise severely autistic. I am also afflicted with Tourette’s and personality disorder as well as the sensory and coordination abnormalities that sometimes accompany autism spectrum disorders. People think of autism spectrum disorders as social disabilities, but my autism affects most of the skills required to function in everyday life.
……………………….
We hear about the mildly affected autistics who make stunning accomplishments and the most disabled ones who spend their lives in institutions, but no one talks about the untold number of adults like me who are muddling through life in the community, burning out and either ending their lives or spending them getting into trouble. These unfortunate outcomes show that you can’t just throw an Asperger adult into mainstream and expect him to function well without support, especially in these tough times. It is sad that they have to go to extremes like ending their lives to get anyone’s attention.
The entire comment can be read here.
Thanks very much to Marla Comm.
This comment hits a nerve with me. It gets right to the heart of my worries for my son. He’s in high school now; what kind of support will he need to have a productive life in the future? Will he get any support outside of what the family offers?
I guess this is one reason that it’s hard to see references to autism as dreadful etc.—-it is a lifelong condition and people (as in the rest of society) need understanding of them being different, and that they need to change and evolve.
Anyone who is interested by and sympathetic to the story of Marla should read also these links:
http://www.autistics.org/library/anon-bio.html
http://thiswayoflife.org/blog/?p=15
http://thiswayoflife.org/blog/?p=60
http://www.autistics.org/library/more-autistic.html#burnout
It is possible to have a decent life with the impairments she faces, if only she had supports. How wrong that people are made to feel so low that assisted suicide looks like a good thing?!
(see **this article** and other similar ones.)
I wish we could get some of those heaps of “Autism funding” to make real communities for autistic adults to live together and help each other (not to say that some people wouldn’t still need staff also). And most importantly, where those who can’t work a regular job wouldn’t have to in order to survive.
Most of us are prevented from holding millionaire-type jobs by our very forma de ser and so our dreams of creating this sort of thing on our own, seem next to impossible. Something off-the-grid and under-the-radar like Leisureland is great for the people who are doing it, but not for autistics with physical disabilities who might love to live in a quiet place in the country but need to live where there are a lot of medical facilities nearby.
I tried to put a comment with some links to other stories that relate to Marla’s… and it was not accepted.
Is there some spam-filter acting here and what should I do about it? Thanks.
Natalia, sorry about that—happened to someone else. I’d really like to know the links—can you try again and, if it does not work (and I’m checking the spam filter), please email me! And apologies for any inconvenience.
It has showed up, now. That is comment #3.
Thanks to all of you for responding to my sad story. Unfortunately, I
won’t get any support as long as I live in Montreal.
I wonder if any of you realize what a terrible place this city is. Life
here is so stressful that even many nondisabled people barely cope. Many
don’t admit it and even claim to love the place, but they don’t reveal
their true feelings because cultural mores here dictate that people
swallow their discontent and not be too vocal about it. The number of
people who have the means to do so and leave tells all. In fact, one
reason it’s so hard to find support here is that the high calibre people
with altruistic bents are the ones who leave.
This city literally made me a nervous wreck and is driving me nuts. I
had it with the mobs, crazy pace, noise and round the clock traffic
jams. In addition to these problems, which plague all the big cities,
Montreal suffers from a rottenness all its own. Like all cities in
Quebec, it is a battleground between French and English. The provincial
government doesn’t follow the principles of dermocracy and is forcing
French down everyone’s throats. The French aren’t exactly running around
shooting non-Francophones, but the government is making life here so
hard for them that those who can leave. It is slowly eating away at all
their rights. It’s next to impossible to find a storekeeper or even
police officer who speaks English. People tell me to learn French, but
my learning problems limit my ability to master second languages. As an
autistic, I have a weak hold on communication to begin with. The
language tension is also destabilizing Canada. Autistics need stable
environments. This country isn’t it.
The Quebec government is so obsessed with language it’s letting important
services like health care and road maintenance go. Montreal roads are
rotting away with holes. Old and poorly maintained infrastructure means
more of the kinds of disruptions that send me into meltdowns. The
climate is so harsh that even the best buildings are falling apart. The city is filthy and infested with pests like squirrels. As I
said in my first letter, health and social services are next to nil
here. If any of you take the trouble to help me find resources in this
city, don’t be fooled by the glitzy websites our CLSC network
(government run health and social services network) so proudly displays.
The CLSC system is a province-wide joke. I already tried getting help
from them, but get nothing except a few false words of lip service. If
anything, the CLSC system makes it even harder to get help. Other
organizations cling to the mistaken belief that CLSC’s have everything.
If I seek help from those organizations, they pass the buck to the CLSC.
Realizing it has nothing to offer, the CLSC refers to me outside
agencies, which just throw me back to the CLSC. It’s as though they’re
playing ball with me. Our autism society similarly let me down. One rep
actually told me to hire help with housework. If I could afford that
help, I would have hired it a long time ago and not be asking them in
the first place. The head of the society did nothing but string me along
with vague unkept promises and then start pushing behavior mod on me.
While the technique may work in youngsters, I am too burnt out to work
on anything at this stage of the game. If I had the support I needed and
a proper living situation, my behavior would improve on its own.
All services in this city, even nongovernment run ones like stores, are
suffering from a low morale that leaves workers uninterested in their
jobs and putting no effort into them. Between the mobs, poor management
and sluggish cashiers, I waste a lot of precious time standing in long
lines and fighting to get back the differences due me when I get
mistakenly overcharged. I have enough trouble managing time and getting
daily tasks done without spending hours in traffic jams and long lines.
On top of that there’s the rudeness this city is actually known for. If
an HFA wants to learn how to tolerate being around people and get along
with them, this is one of the worst places to be. All it takes is an
accidental collision with someone I bump into because of bad
coordination to get peppered with angry curses. People here are always
rushed and on edge. This place is one big nervous wreck. As a fragile
autistic, I need a calm environment, not mad stampedes and people who can’t
have a conversation without shouting at the tops of their lungs.
One thing this city was always known for is its miserable climate.
Thanks to climate change, our weather is even more topsy-turvy. Each
season brings its own brand of vicious storm. We get less snow than we
used to, but more of the devastating freezing rain that turns the whole
city into an icy prison. With thick layers of ice coating everything,
it’s impossible to get out of the house many days in winter. The other
seasons I’m just as housebound by torrential rains that hit every other
day. Montrealers are forgetting what the sun looks like because of the
changes. It’s been several years since we had a real summer. Lack of
exercise makes me so mierable on these wet days I spend them stoned in
bed. Lack of exercise and transportation aren’t my only problems. I am
worn out from struggling with clothes that are more like spacesuits than
anything else. It’s getting to the point where I can’t leave the house
without an umbrella.
I am at such odds with this city’s culture the disconnect goes beyond
autistic failure to fit in. For health reasons I try to follow a low
calorie vegetarian diet and depend on vegetables and other diet foods to
satisfy the huge appetite I was cursed with. Stores here put only junk
food on sale and stopped selling seconds for reduced prices the way they
used to. Thanks to these policies, i can barely afford food and
sometimes subsist on candy. I don’t know if it’s a Montreal thing or a
millennium trend, but sad songs are so popular here I can’t go anywhere
without them whining in my ears. Our stores sound like funeral parlors.
I don’t tolerate sad songs because I’m sensitive in certain ways. I
made a lot of enemies in this city with requests to turn radios off and
crying spells sad songs set off. As little as this city has for me, it’s
a haven for kids. The few services this city offers like public skating
are geared to kids. The whole city is mobbed with them. Many of them are
such troublemakers that other older adults are afraid of them. I
recently had a bike stolen by two kids who followed a car into my
apartment building’s garage. As was the case when I went to school, kids
still sense I’m different and tease me. I am terrified to even go near
them.
In my first letter I mentioned the changes that affected my job. My
workplace is run by the Quebec government, which turned all the places
it runs into slave labor camps. Although I do my assigned tasks well, I can’t cope with the pressure I’m now under or the daily changes being made to the procedures I follow for tasks. My job’s increasing complexity also strains my weak organization skills. I spend more time than I should on frantic searches for work materials. Keeping my desk neat is now so difficult I am starting to battle with the kind of frustration that drives me into rages at home. Although my sensory integration problems don’t usually involve sounds, the sounds two things associated with any frustrating task like looking for things and keeping house irritate me when I do these tasks. I feel like worms are crawling inside and get so irritated I bite myself, rip the papers I’m searching through or break something. That irritation continues until I stop the task. I never had good relationships with co-workers, who are the highly social types who value conformity and treat people who are different like dirt. Staff are even harder to get along with now that they’re under the same pressure I am and suffering from the same pitiful working conditions. As with all Quebec workplaces, most are French. Many of them have chips on their shoulders, look down upon non-Francophones are so hard to get along with even the most socially adept workers find them tough.
I can’t get another job because of a language law that requires all applicants to be fluent in French. You can’t get a new job without passing a tough French test, which I heard asks trick questions that set applicants up to fail. Even without the language law, I wouldn’t have any options. I can’t do menial work because of my hand coordination and low frustration tolerance. All the other white collar level jobs are getting much harder, thanks to our government and hard times. I don’t know about other places, but I feel that jobs here are no longer suitable for autistics.
Some people think that rural living is better for autistics. While that may be true for some, I wouldn’t be happy on a farm because I have no interest in nature, would find the smells unbearable and would find the work, which is manual, difficult. Although I can’t cope with big cities, I like the city ambience in tiny doses. I’d be happiest in a small city in a warm dry climate where I could bike all year long. Until it got out of hand around the turn of the millennium, I liked modern living more than I do now. I need a place that’s modernized enough to ensure safety and sanitation, but not like the jails that the most advanced western countries became. An eighties type lifestyle would suit me. I spend all my waking time wishing I could win a lottery and get out of this miserable living situation and hire the help I need with the house. It’s really sad that I have to spend all my waking time wishing assisted suicide would be legalized when all it would take is the right support and living environment to restore my interest in living.