Autism was first recognized in 1908, but because it is a “spectrum disorder,” it is actually a group of conditions that have some common elements. Autistic people show a wide range of symptoms, so it is a very hard condition to pin down, and understandably, there has been a lot of misinformation tossed around. Research on autism spectrum disorders did not gain momentum until the 1970s and 80s. Autism was initially thought to be rare, but it is now thought to be fairly common, with as many as 1 in 50 children affected in the general population.
At first, some doctors thought that autism resulted from poor parenting, but recent studies have confirmed that at least 15-20 percent of cases of autism are linked to a rare genetic mutation. There are still many parents who feel that their children’s autism was the result of mercury poisoning from vaccinations, although several studies to date have not borne this theory out. It is still possible that there may be some environmental cause for autism, but if so, we have not discovered it yet.
For a little over a decade, I worked in a school building in St. Paul, MN, that had a special ed program for autistic kids. There were two rooms. One was for the kids who had severe symptoms. Most of those could not talk. The teachers wore special aprons with symbols on them. The kids would point to a symbol to tell the teacher what they wanted. At least one kid would have a complete meltdown each and every afternoon, complete with crying, screaming and kicking. In the room next door, there were kids who were considered “teachable,” who were learning life-skills that would lead to jobs (albeit menial ones) and allow them to take care of themselves to some extent. Then there were a few kids who were higher on the scale of teachability – including some with Asperger’s Syndrome, which is a very high-functioning type of autism. These kids were mainstreamed into regular classrooms and given special help for a short time each day. Each child’s Individualized Education Plan (IEP) was slightly different. Some of these mainstreamed autistic kids had an aide with them all or part of the school day.
Here are some myths about autism that you may have heard of, followed by the truth as we understand it today.
1 People with autism don’t want friends. It’s not that they don’t want friends. The problem is that autistic people struggle with social skills, so they don’t always communicate or interact in acceptable ways. Also, they may have trouble interpreting your words or actions. Remember that there is a wide range of symptoms, so there are people who cannot use language at all and those who can talk. The talkers communicate differently because their perceptions are different from those of normal people. Some people with autism don’t like to be touched (at least, not without warning) because it over-stimulates their brains. Each person’s symptoms are different.
2 People with autism can’t feel or express any emotion. They can, but they may express their emotions differently from the way normal people do. There is a separate condition known as APD, which has been called “Affective Personality Disorder,” “Antisocial Personality Disorder,” or “Avoidant Personality Disorder.” This is a completely different type of disorder.
3 People with autism can’t understand the emotions of others. It’s not that they can’t understand them. It’s an interpretation issue. They don’t always pick up the normal body-language cues or the tone-of-voice cues that people use to express how they feel. As strange as it may seem, some autistic people don’t make a connection between smiling and happiness, or rolling your eyes and impatience, for example. And they may not be able to filter out the sarcasm in your flip remark – so they may take what you said literally, with unfortunate results! It’s important to communicate very directly and literally with autistic people so that they understand. Most people aren’t used to communicating their feelings quite that bluntly or directly, but that’s what works.
4 Austistic people have no sense of humor. Not true! Their sense of humor may be different from yours or mine, but that doesn’t mean they don’t have any sense of humor at all. Here and here are links to two videos on YouTube that bear this out.
5 People with autism cannot have relationships. They can, but they do have more trouble with relationships than those of us who are not as withdrawn as autistic people tend to be. Obviously, there has to be a great deal of understanding on the part of both partners, and a willingness to learn and adapt, but it can be done.
6 Autistic people can be dangerous. If they are over-stimulated, it is possible for them to lash out at others, but autistics generally tend to keep to themselves. Some of their ritualistic behavior is more dangerous to themselves than to others. In schools, kids who are mainstreamed are accompanied by an aide at all times if there is any indication that they might be a danger to others. The other kids in the class are told in no uncertain terms not to touch or tease the autistic child. Each person has different things that might potentially “set them off.”
7 Ritualistic behaviors should be stopped. These are behaviors that the person repeats in exactly the same way every time, every day. Sometimes they are annoying, uncomfortable to watch, or even dangerous (such as head-banging.) They are really attempts by the person to make sense of the world. Some rituals involve a sequence of activities, which, if interrupted or changed suddenly, can be cause for severe anxiety. If the activity isn’t hurting anybody – or dangerous to the autistic person, it should be allowed.
8 Autism is an intellectual disability. Sometimes, but not always. Again, it’s a spectrum disorder, so people at the “high” end of the spectrum have a normal or even very high IQ. Some autistics have exceptional talents, and may excel in math, music, art, or some other area. Dustin Hoffman’s character in the movie, “Rain Man” is one example of someone with special talents. He was what they call a “savant.” (He could count the number of toothpicks spilled onto the floor instantly. And yet he couldn’t tell the doctor how much a candy bar cost.) It’s important to remember that not all autistics can do this sort of thing.
9 Autistic people are not interested in sex. They are. However, that said, there are some, as I mentioned earlier, who find it hard to process being touched, so it’s an individual issue.
9 Kids will grow out of autism. As they learn to deal with the world, some of their symptoms may be controlled or they may learn to communicate in a more normal and socially acceptable manner, but autism is a lifelong condition. Early and intense intervention is definitely recommended.
10 The incidence of autism is increasing. This may seem to be the case, but remember that research into this spectrum of conditions is still relatively recent. People in the past may have been diagnosed differently, or their condition may simply not have been formally identified. I know of one adult whose parents and teachers were aware of his issues, but he was not formally diagnosed with Asperger’s Syndrome until adulthood. Right now, approximately 8.4% of our kids are autistic. That’s still a pretty low number. And remember: autism is not contagious! You cannot “catch” autism from other people. You are either born with it or not.
11 Autism is a brain disorder. The fact is that many autistic people have other conditions, such as gastrointestinal disorders, food sensitivities, and allergies. These symptoms may or may not be related to a brain disorder, but the fact is that autism is not just a “mental” disorder.
12 Treatment for autism is covered by insurance. Before passage of the Affordable Care Act (Obamacare), autism was excluded from most insurance policies, and only half of the 50 states required coverage for treatments of autism spectrum disorders. Fully half of families with autistic children and teenagers reported that their health insurance failed to meet their needs. Under ACA rules no one can be turned away because they have autism spectrum disorder, and individuals or families who have an autistic child cannot be charged higher premiums. There is a cap on out-of-pocket expenditures. Plans must cover behavioral health treatment, habilitative services, and prescription drugs. (Some states will require an applied behavior analysis.) If your claim is denied, there are new rules for appealing the claim. All children are entitled to ASD screening at ages 18 and 24 months, and this screening is available without cost-sharing. Families can purchase a separate, special health plan solely for the child. Plans must cover pediatric services, including dental and vision benefits. Young adults can stay on their parents’ plan until age 26. Adults may be eligible for expanded Medicaid services if their state permits it.
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