I’ve been all too conscious of autism since 1998 when my son Charlie’s daycare teachers mumbled something about the delays in his development — no talking, oddly repetitive play (opening and shutting the lid of the CD player ad infinitum) and screams and distress at any sort of change. Charlie was diagnosed with autism in July of 1999 and, ever since, my husband and I have made educating and caring for him the determinant for our every life choice, from where we have chosen to live to our jobs.
April has been designated “Autism Awareness Month” by many autism organizations; others have dubbed the month “Autism Acceptance Month.” As someone who lives round-the-clock in what my husband has dubbed “autismland,” some facts about autism:
1. More and more children in the U.S. (1 in 88 or even 1 in 50) have received a diagnosis of autism since the 1990s. Many point to an ongoing trend, the broadening of the official diagnostic criteria for autism — indeed, “autism” will soon become an umbrella term for individuals considered severe like Charlie and those with “milder” forms of autism, such as Asperger’s Syndrome. Receiving an autism diagnosis today means something a bit different than it did when child psychiatrist Leo Kanner first identified the condition in 1943.
3. Autism is a lifeline neurological disorder and there is no known cure (it is debatable if it can be cured); it is not a psychiatric illness. Studies of the brains of autistic persons have revealed unusual activity and structural abnormalities.
4. Many individuals with autism diagnoses have unusual responses to sensory stimuli from the lighting in rooms to sounds to tastes and textures.
5. Far more boys and men have autism diagnoses. But it is possible that autism manifests itself differently in girls and women and is under diagnosed among them.
6. “If you’ve met one autistic person, you’ve met one autistic person.” I’ve heard many people, including parents of autistic kids (some my own friends), say this. One reason is from frustration after mentioning their child is autistic and hearing someone say “oh, like the guy in the movie Rainman who can count all the toothpicks” or “oh, like Temple Grandin who talks about thinking in pictures.” It is a stereotype to think that all autistic persons have “special” skills like perfect pitch or being able to name many prime numbers.
Since autism is a spectrum disorder, those diagnosed as on the autism spectrum can present as very different. My son Charlie can’t read and has intellectual disabilities, meaning and will always need 24/7 full-time care. Many other autistic individuals are in college, have jobs, live on their own, are in relationships and have kids. What makes them and Charlie all “autistic” is that they have varying degrees of severity in their abilities in social interactions, communication skills and cognitive abilities.
7. Only 15 percent of autistic adults in the U.K. are employed full-time. Only 21 percent of autistic adults in the U.S. have participated in the labor force. Slowly, autism organizations have been making efforts to change this (here’s an employment guide (pdf) from Autism NJ), but far more work needs to be done.
8. Violent behavior is not a feature of autism. Maybe you’ve heard or even seen an autistic child doing something that seems aggressive, like hitting or grabbing. It is necessary to keep in mind that the reasons for this are very likely not any wish to injure anyone but a behavior resorted to in desperate anxiety, fueled by a deep frustration at being unable to communicate.
9; For all that there are more people diagnosed with autism and that bring more understanding, life with autism can be profoundly isolating. It is not that autistic individuals wish to be alone: the sensory and social challenges many have can make routine activities like grocery shopping difficult.
My son Charlie is either at school or at home with Jim and me. Of course, he needs to learn to be with more people in more settings, but right now, he can only tolerate such for very short periods of time.
10. For all their struggles with change and a frequent insistence on routine, autistic individuals can and do change and — speaking based on observations from hours spent day and night with Charlie — very much wish to, though doing so is often extra hard due to neurological and other issues. But if there’s one thing you take away from all you may hear about autism this month, I hope it might be that, while autistics often need routine, change is every bit as important.
More Care2 Coverage About Autism
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