It’s like Groundhog Day at my house. The same music and lines play over and over in the background. And over. It’s because April is Autism Awareness Month, and my son has recently had the privilege of being part of a series of Public Service Announcements for the occasion. We just received a link to the almost final product, and he is watching them for the zillionth time and laughing when the video gets to his part. He’s the rock star. You can watch one of them here.
I love seeing him so proud. We haven’t talked a lot about autism, and I wasn’t sure how he would respond to this experience. I admit I held my breath when the producer walked into the green room and asked the kids what they know about it. My kid was the first to raise his hand and gave me chills when he said “autism means you’re talented.”
It’s called Autism Spectrum Disorder (ASD) because there is a wide range of abilities and functionality amongst people with autism. The definition and criteria are changing, and it is becoming ever more prevalent. Current estimates are that 1 in 50 school-aged children has autism, with far more boys than girls being diagnosed. “Asperger’s syndrome” is used interchangeably with “high-functioning autism,” though recent diagnostic changes have eliminated Asperger’s as a distinct diagnosis. Anyone with an ASD diagnosis is “on the spectrum.”
ASD is a neurological disorder that causes the brain and nervous system to behave differently than in “typical” individuals. It manifests in a variety of ways including hypersensitivity to touch, sound, light and other stimulation; failure to understand common social cues such as facial expression, tone of voice, and body language; problems with coordination (dyspraxia); repeating the same words and phrases over and over (perseveration); urges to move the body repetitively and without purpose (“stimming”); erratic sleeping and eating patterns; learning disabilities; routines which are rigidly followed and other symptoms. Someone with high-functioning autism, like my kid, may seem like any other kid until you get to know him. Those with so-called classic autism may appear profoundly disabled.
Living with someone on the spectrum has its challenges, but it also makes me a more thoughtful parent and person. It’s not just from trying to explain his disability, but learning how to speak and act in a way that resonates. For example, I’ve learned not to ask him “why” (why are you crying?) but to phrase the question as what, who, or where (what made you cry?). I’ve learned that he will cringe if I touch him unexpectedly, and I warn others that he will not want them to touch him at all. As a parent, I am often surprised and sometimes annoyed at how many people cling to outdated notions about autism, and in the spirit of this month, I present my list of top Autism myths.
People with autism don’t talk
Actually, my child with autism talks. A lot. Sometimes he won’t stop talking. While some people with autism truly are nonverbal, most can and do talk. The difference between them and “typically developing children” appears in how they talk. They may speak randomly and repetitively, or talk obsessively about something. It may be that when you ask a question they respond with an unrelated statement or not at all. The answer may be memorized or have that feel because of a flat or overly exaggerated tone of voice. You can learn some amazing things by listening to what’s on their minds.
People with autism are aggressive
This one came up in the aftermath of the tragedy in Newtown, CT. Some members of the media speculated that the perpetrator may have had Asperger’s. This may or may not be true, but Asperger’s does not cause someone to kill. It may have caused misunderstandings with others, social isolation or anger (far more likely directed inward than outward), but people with Asperger’s are also very in tune with rules and consequences. They live and breathe by rules, sometimes to the extreme, because rules are clear and direct and tell people exactly how to behave. It’s possible that Adam Lanza may have had Asperger’s, but its also irrelevant to the suffering he caused for so many.
People with autism are loners
It’s true that you often find them alone, but it’s not (usually) because they want to be. People with autism often don’t know how to approach others, or how to do so appropriately. They may be naturally shy, or have social anxiety that prevents them from trying to engage with others, or they may be outgoing and filled with ideas, but have trouble negotiating social dynamics and fail to engage socially. Sometimes they are put off by the noise created when too many people gather, so they walk away.
People with autism are stupid
Ok, need I say it? They aren’t stupid. In fact, some of the most brilliant people in history are thought to be (or were) autistic. Check out this list .
People with autism are geniuses
Not always. Just as there is a wide range of ability amongst the general population, there is a wide range in the autistic community. the difference is that the ability is much wider within the individual. My son’s pediatrician explains it this way: you know how everyone is relatively good at some things and less so at others? In people with autism, the range is much wider. I may be good at cooking, but I’m not likely to win any contests. By the same token, I’m not so great at team sports but I can get by ok. My kid with autism is off the charts in both directions.
Your child doesn’t have autism, he just needs more discipline
Kids with autism sometimes appear “wild” or out of control because of the way they experience the world. They become overstimulated very easily and because they don’t understand social cues they will not respond to “the look” and scolding only makes them more anxious. They also tend to argue with parents and caregivers because the system of authority makes no sense to them. If I can tell my son to sit still and be quiet, why can’t he tell me to do the same? He may not be able to sit still through an entire meal because his nervous system is urging him to stim, and he may not make it to the bathroom because he can’t feel it coming. An experienced therapist once told me that, when it comes to kids on the spectrum, “they would if they could, not they could if they would.”
Don’t get me wrong, there are effective ways to teach kids on the spectrum self-control, but it requires more thought and consistency than for other kids because they just won’t respond to the standard parenting techniques.
People with autism are good at math and science
People with autism tend to be extremely analytical. They have to be in order to fit in with others. This analytical ability sometimes translates to prowess in math and science. Think of Dr. Sheldon Cooper from The Big Bang Theory — a brilliant portrayal of someone on the spectrum. Sheldon shows how he uses his professional skills to get by socially and vice versa. But in real life, people with autism are good at all sorts of things. My kid thrives at chess and creativity and and admits that math is his Achille’s heel.
Judith is our Active Mama’s Munchie Maven and Yoga Maven. That means she teaches Active Mama’s Cooking Basics Chef classes, and is also our instructor for Active Mama’s Mommy Yoga with Judith.
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