People with autism call themselves "autistics," or "autistic people." We feel that our autism is an integral part of who we are, because it makes us extremely different from the "normal" people around us. We don't relate to the "politically correct" types of labeling that we see other groups of people with disabilities using.
In fact, many of us have spent our lives considering ourselves aliens and not human at all. When we read psychology and neurology textbooks we find that we do not match the descriptions at all, and we come to the conclusion that those books are not about us.
My job here is to explain what autism has to do with advocacy. I'd rather answer questions, if you have any, than try to stuff you full of facts. Do you have questions, or statements you want to make, about autism?
The first thing parents of autistic children usually complain to their doctor about is that the child does not recognize the importance of faces. In fact, the toddler actually doesn't recognize people.
The part of the brain that performs "facial recognition" is missing or inactive in a large percentage of people with autism. They simply have to use other ways to identify people, like their voice, the way they walk, and the places where the people are seen.
The sensory systems of people with autism are scrambled compared to those of normal people. However, no two autistics have the same pattern of disabilities. No two make the same assumptions, or share the same thought patterns. In-person meetings of autistics are spent ironing out the details of what they mean, not relating to each other emotionally. This year's t-shirt for an international organization of autistic adults reads: "Organizing autistics is like herding cats."
Some problems we might see in autistic people are:
These are just samples of common problems.
We have structural differences in our brains. The missing and deformed structures are that way permanently.
However, many autistics are clever about working out ways to "get around" their deficits. Most learn to do academic and social activities in spite of the difficulty.
The extra effort involved, though, causes us to miss childhood milestones, by months or even years. This makes autism a "Developmental Disability."
We are behind our peers in learning to sit up, roll over, speak, hold a conversation, learn to organize and clean a bedroom -- aspects of our neurology that are affected by our particular missing abilities.
I personally know autistic adults as old as 50 who cannot grasp how to organize a room or house where things are just lying around. The place can't be cleaned up until they have help from someone who has the proper Executive Function skills.
This can be aggravated by the "out of sight / out of mind" principle. Due to structural brain problems, autistics often cannot connect mentally with items misfiled in their brains unless the items are visible. The ideal storage system for autistics would be open shelves.
Many of us think in nonverbal formats, so filing by the name of the activity or the name of the object doesn't work. We don't think of a name until we actually "see" the object.
Most autistics are not ready for college until they are 25. Even then they may need help from someone with organizational experience.
They may be hitting their stride at age 35, but seldom get promoted to a high post due to their Executive Function problems. They make excellent technical employees, though, able to work alone and focus for hours on a single task.
Autistics also get routed to grocery bagging and sheltered workshops if they have not been able to develop the ability to speak and hold conversations by the time they are 18 years old. A few use sign language in place of speech, but many neurotypical people look down on anyone who doesn't speak, and prefer to consign them to the dead-end bin of life on that basis without checking out what else they can do, or how else they can communicate.
In mid-life, at about age 45, life may start to fall apart if the autistic person has not gotten recognition in their narrow area of expertise. Long-lurking health problems become urgent, due to their body's nonstandard patterns.
If they get laid off from a job, they have a far smaller chance of re-employment. This is because of their poor social skills (no emotions showing on their faces, lack of understanding of others' body language, poor ability to select language for political correctness in interviews) and their lack of Executive Function.
Employers hiring 45-year-olds are looking for experts, mid-level managers, administrators. They usually don't consider a 45-year-old for an entry level position, believing that person would make a bad employee. Entry level may be just right for many older autistics, since they can do the job "by the rules" and not have to deal with "off the cuff" decisions and coordinating projects that strain their neurological makeup.
Now we come to the question of why autistics are not out there with the rest of the disabled community, being a part of community, striving for civil rights and needed services. It seems like people who are that different from those around them, and who have so much in common, would naturally group themselves together.
The answer is that the very definition of autism is a person who can barely get by in society due to massive neural deficits, language impairment, developmental delay, and sidelining due to social issues.
By the time the adult autistic has developed to the point of understanding the issues involved in disability advocacy (knowing their own weaknesses and what would help them), they have reached that difficult mid-life area where things are starting to fall apart.
They have been underemployed or not employed up to then, are struggling to "make it" at all as a productive, self-reliant member of society, are working at 110 percent of capacity all day every day due to the demands of the "normal" people around them to exceed their capacities and do what their neurology will not allow them to do.
They are stressed out, and showing it in illness and burn-out.
Those who cannot become or stay employed are often lost in depression and self-hatred, unable to leave home or relate to other humans.
Many were institutionalized when young, never educated, never allowed to learn to compensate so that they could compete in life.
I was lucky. When I was diagnosed, my parents were advised to commit me to a state institution where I would be kept clean, potty trained, fed and taught to do tasks in a sheltered workshop.
They were advised to then to have another child to replace me.
My mother was one of those 1950's parents who thought that the traditional way of hiding disabled children away to lose their lives was too extreme. So she kept me, and tried to hide me "in the open" by teaching me to "look normal."
"Looking normal" can work for about 5 minutes, until people start interacting with me and find out that I am distinctly "different."
I worked for about 25 years, as an entry level person, then as a technician. When I became unable to work, I went to college, learning a lot about how to function in society. When I got onto SSDI and SSI, I had the leisure to look into my disability and form opinions about what would make the lives of autistics better. Now I am 60 -- I have progressed in my development enough to be an active advocate in a mental sense, and perhaps a social sense.
ASIDE: I thank Georgia Voices that Count for giving me the idea to do this kind of advocacy, and the motivation and opportunity to work out how to do it.
I am, first and foremost, an autistic. I cannot use my senses the way others would. I'm helpless if I am subjected to high levels of sensory input and new learning situations. So I cannot just "be out there" in public taking part in anything. I have to plan carefully so that when I get somewhere I will still be functional enough to help rather than hinder my cause. I have to conserve enough of me to be sure that I can get home again.
We have accounted for me now -- how I got here and how I feel I am able to advocate. Where are the other autistics?
One in 166 people is autistic, so there should be 24,000 of us in Metro Atlanta. There is a support group here for adult autistics, and we know 12 who come to the group from time to time. There are two others who would like to, but are in distant cities and cannot drive themselves to Atlanta to attend.
Some adult autistics are home struggling with the requirements of human life, depression, exhaustion, sensory overload, confusion, inability to communicate, maybe locked up in mental hospitals for "acting out," perhaps just kept "under control" in nursing homes. Some are leading quiet, successful lives. Some earn a living but never succeed at personal relationships. Some are spectacular successes, like Leonardo da Vinci or Thomas Edison.
I have the great luck to have received or developed the abilities to speak in public, to relate somewhat to other people, to develop to the point where I could dare to do this.
I might be the only autistic advocate you ever see in person, although I know of a few others in the U.S. and Canada.
We actually have a worldwide network of autistics on the internet. Face-to-face meetings and speaking are so difficult for so many of us that typing to each other is our natural form of communication. I have learned to adapt myself to the general human form of communication -- speech -- so I can be here to try to advocate for autistics and other groups of people who have disabilities.
The science behind the behavior
Autism is a group of neurological differences that drastically affect brain structure and how the brain works. Differences in development happen before most women even know they are pregnant. Some of the children appear fairly normal up until 18 months to three years of age, but others are obviously "very different" from the day they are born.
Autopsies show that there is a section of the lower brain completely missing. Also, the main "switching" areas of the brain are far smaller than usual.
The totally missing section of the brainstem causes interruption of sleep control and problems with hearing. It also decreases the ability to control and move facial muscles. This can affect the ability to show emotion and control the muscles used to speak.
Another effect is a lack of filtering when autistics receive incoming sensory messages. They cannot shut out "extra" data to focus on a small part of it. They may be overwhelmed with detail, unable to understand any of it, or may "hyperfocus" on tiny aspects of their surroundings.
Either way, without an explanation of they are seeing, they may miss the "big picture" that most people would catch onto immediately.
An unusual "bundling" of the vertical sections of the brain as they grow upward out of the brainstem before birth can result in to locked-in thought patterns. This makes it hard for people with autism to change their attention from one thing to another. Instead, they may get "stuck" in a continuing or circular rut of their own thoughts.
This may make it seem like the autistic person is talking more to himself than to the people around him. It interferes with that person's coordinating with a group.
Why do we need advocacy? I'm concentrating on three things to begin with.
Our Disability and Medicaid systems say that autistics with an IQ over 70 do not need assistance and are not disabled, even though they lack abilities that affect how they can care for themselves. People with brain injuries who have the exact same disabilities ARE eligible for services.
I believe that this difference in treatment is a cultural leftover from the old way of seeing autistics as mentally retarded, useless children to be cast off and hidden as adults. It's not a rational ruling.
The majority of autistics can be productive members of society if
they are allowed to work at their level throughout their life spans,
they get help to manage their lives so that they don't burn out and become too sick to work
their method of communication is accepted, so that work instructions can be made in writing
they are not treated "behaviorally" to force them to look like others. They should receive reasonable and supportive education to help them learn to work around their disabilities, not "treatment" designed only to suppress any behavior that looks unusual.
Copyright © 2004 Patricia E. Clark