While speaking in Iowa on Nov. 24th, Democrat Hillary Rodham Clinton pledged that, as President, she will help autistic families by boosting funding for research and education to $700 million annually and fully fund the Combating Autism Act of 2006, which she had sponsored. While Clinton's promises are commendable, they don't go far enough to help the many adults already living with autistic spectrum disorders. Because we don't fit in, we often fall through the cracks, and are ignored by most of society.
The adult autistic population is about to explode. Each year, about 25,000 children are diagnosed with various ASDs (autism spectrum disorders). The number of diagnosed cases has risen exponentially, from 1 in 10,000 in 1993, to just 1 in 150 in 2007. Children with autism grow up and become adults with autism. Are we as a society ready to embrace them?
Most people in America still don't understand autism. Many think of the movie Rain Man or of autistic savants. In truth, most of us are not savants. And our IQs can range from genius through average to impaired.
Autism is a neurological difference that primarily affects communication and socialization, rather than intelligence. That difference can manifest in many ways. Some autistics cannot communicate through spoken language at all. Others can communicate well through language, but miss the non-verbal cues and body language which comprise more than two-thirds of interpersonal communication.
Most of us grew up at a time when ASDs like AS, PDD-NOS, or NLD were not recognized. We tried to fit in, but without much success. As youngsters, we didn't have the opportunity to acknowledge, frame, or address the issues caused by these disabilities. Instead, we were bullied as kids, ostracized as adults. We were told we were rude, lazy, or crazy. I was in my forties, well into adulthood, when I discovered that there is a "word" for this defining aspect of my life of continuous struggle, and that others have had similar experiences, similar difficulties.
Like anyone else, we long for acceptance. We want to have friends, relationships, and careers. Many of us hoped that in time we would fit in, we would become like everyone else. We have worked hard to learn by rote the social skills that come intuitively to others, studying psychology, biology, sociology, human behavior and body language. We tried to overcome our differences, hoping they would go away. But they didn't, and never will. At some point on life's journey, we realized that fitting in or trying to be like everyone else is just not worth the huge amount of effort it requires.
As adults we are expected to be competent on our own, yet many of us need some degree of routine assistance and attention beyond what we ever expected. We are intelligent, competent, and capable of doing things in a meaningful way on our own. Many of us are highly educated, skilled in various areas (such as writing or programming), and are highly motivated, persistent, conscientious, honest, thorough, kind, and hard working. There are many ways that we can be useful and helpful in our communities and in society, if people allow us to use our strengths and don't judge us for what we cannot be or do. But it can be very difficult to find a job that will make allowances and accommodations for our disabilities while making our abilities shine.
We try to conform to the mold. In spite of great effort to change, we remain our own unique, eccentric selves. So we travel life's road pretending to be normal, trying to fit into a world that refuses to accept us. Yet all our effort and persistence is not good enough for the neurotypical world we live in. We soon discover that it is impossible to fit a large square peg into a tiny round hole.
Our minds work differently. We may require very clear, comprehensive, step-by-step instructions. Our comprehension of body language and nonverbal social cues, which make up a lot of workplace communication, is almost nonexistent. Slow mental processing speed or poor coordination may make us seem slow. People don't understand how someone who seems so "normal" or "bright" has such problems with certain things. "If you're so smart, why can't you…" they ask. We are accused of being lazy or rude when in fact most of us work very hard to achieve.
While I have problems with tasks most folks can do easily and take for granted, there are many things that I can do better than most folks. I can write a newsletter or a book - but due to poor motor skills, stuffing envelopes to neatly and efficiently mail that newsletter is difficult and takes me much longer than it should.
Some of us will continue to require some public services to address our unique needs. We recognize the things that we need help with, but aren't always sure how to ask for these in a direct and productive manner. We remain who we are, and often continue to have trouble fitting in, especially at work. At home, we can surround ourselves with people who understand us, we can choose our friends, but at work this is harder to do.
The agencies that are supposed to serve the disabled can't assist us because we don't fit their expectations. We need to find a way to make ourselves better understood, to educate the professionals and agencies about our needs so that they give attention towards what they do WITH us instead of FOR us.
Responding to Hilary Clinton's promise, Lee Grossman , President and CEO of the Autism Society of America, said, “The investment our nation makes today in early identification, services and support will create opportunities for these individuals to contribute meaningfully in our society - as is their right.” In order to fit a square peg into a round hole, the round hole must be made bigger. If society can be trained to accept our differences and work with them instead of against them, the need for such services will not be as great.