When I read about a child with autism, I often wonder what he’s really like. You might think I would know what he or she is like, because I have my own child with autism. Here’s the thing about autism though—it is a spectrum disorder, which means that two children with autism can be as different from each other as a child with autism can be different from a typical child.
There is a saying in the autism community: If you’ve seen one child with autism, you’ve seen one child with autism.
I talk about my son Jack here and in my other writing a lot, and I thought you might like to know what he is like. He is diagnosed with PDD-NOS, which stands for Pervasive Developmental Disorder-Not Otherwise Specified. In Jack’s case, this is similar to Asperger’s Syndrome, which is more well known. However, he had a language delay when he was a child, so he was not diagnosed with Asperger’s.
Jack is the kind of kid that you would not suspect had autism if you just happened across him casually. However, if you see him a few times and you pay attention, you will notice. One of his friends’ babysitters came by the other day. She’s only spent a little bit of time with Jack, but she noticed that he was different, quieter, quirkier, and likes to spend time by himself. She wasn’t surprised to hear me say he was autistic.
Language difficulties is something many people with autism have. Jack is verbal, so he is able to speak and communicate. In fact, he speaks a great deal. When he was younger, most of his speech was repetitive or scripted. He would memorize lines from television programs and repeat them instead of saying spontaneous things. He has much more spontaneous speech now that he is seven years old, but he still engages in scripts. Some people with autism are not able to speak much or any of the time. Some communicate in other forms. Some people can write in an extremely typical fashion, but still cannot consistently verbally communicate.
People with autism have all different levels of intellectual ability. Unfortunately, sometimes people assume that nonverbal autistics aren’t smart and don’t understand what is happening around them. It is important to remember than just because someone has difficulty communicating, that doesn’t mean he doesn’t have something to say. Just as you cannot assume that someone who doesn’t speak your language is not smart because you cannot communicate with her, you can’t make similar assumptions if an autistic person cannot communicate verbally.
My guy is pretty smart. He tends to be above grade level in his academics although sometimes his inability or refusal to write down his answers or use his speech in expected ways impedes his ability to score well on tests. He is in a mainstream first grade classroom, but has a paraeducator as an aide who helps keep him on task and helps to manage his behavioral…well, let’s call them quirks. Much of Jack’s autism manifests itself in social deficits. He doesn’t play by societal norms.
One thing that people often hear about people with autism is that they don’t experience empathy. This all goes to Theory of Mind, which is the ability to recognize that other people have thoughts that are different than your own. Jack definitely has difficulty with Theory of Mind. He’ll often attribute feelings to me, for example, because they are what he feels. I believe that even with this deficit, Jack still feels empathy. I have seen him sob tortured tears after watching something sad in a movie, although often it is not the same type of sad thing a typical person would feel pain from. (Think about the scene in WALL•E when the robot leaves his bug friend behind on Earth. Jack was extremely concerned about that lonely bug.) He also notices emotions in people at times (but not always) and will try to help them. It is often suggested that people with autism have the sorts of feelings associated with empathy, but just feel them differently than neurotypical people. I think this is definitely the case with Jack.
I feel fortunate that my son is a very cuddly little person. Many people with autism are not. Jack, in particular really enjoys deep pressure, something many people have learned about from Temple Grandin and her “squeeze machines.” Sensory difficulties make touch a problem for many people with autism to handle. I know that I, who shares many of Jack’s characteristics, have a very difficult time with skin to skin contact. I tend to “wipe off” touches after they occur—especially light touches. There is a wide range of what people with autism can handle when it comes to touch, which can be very difficult for parents who want to be physically close to their autistic children. For some people with autism, a hug can be a huge negative trigger. For others, like Jack, hugs are welcome, but are sometimes reciprocated with more enthusiasm than a typical person expects or wants.
One thing that makes my child with autism different from many others is that he doesn’t tend to have meltdowns—tantrums that exceed the scope of that word. Meltdowns are also different from tantrums in that they do not happen because a person with autism wants something or is trying to make a point. They are different from tantrums because they are set off by triggers (which are different for every person) and they cannot be soothed by a parent “giving in.” They are not pleas for attention, they are escapes or reactions to something that is unmanageable to a person with autism. They are difficult for caregivers to manage because often there is not an easy way to stop them. Jack used to have some of these, but has, thus far, really not challenged us with frequent meltdowns. (Knock on wood.)
Stimming is one of those obvious signs of autism that people familiar with the condition can recognize easily, but that people not in the know can easily misinterpret or not understand. There are many, many kinds of stimming, probably as many as there are autistic people. Some of the common stims are hand flapping, rocking, humming, and sometimes even self-injurious behavior such as head banging. Stims tend to be self-calming and self-regulation mechanisms for the people who use them. They often get more intense during times of stress and are used in an attempt to block out whatever trigger is bothering the stimmer. I also believe that it helps organize the body, so that a person can better concentrate on other tasks. Jack does some hand flapping and bouncing, but his most prevalent stim is his near-constant humming. Stimming is often unconscious for people with autism, and sometimes not. I know that I twitch my toes as a calming mechanism, something that annoys my husband, who will often point it out to me because I don’t even notice that I’m doing it.
So, what does this tell you about my son Jack and about people with autism in general? Well, it tells you that there are all kinds of people with all kinds, variations, shades, and levels of autism. My son is a pretty mellow little kid with some obvious quirks and difficulties. He is, of course, far more nuanced that I’ve presented here, but this gives you an overall picture of him. I hesitate to use the term “high-functioning” because I believe the high/low functioning scale to be one that pathologizes people who function differently (but not necessarily lesser) that most, but that is how he is often described.
Jack’s appearance as a seemingly typical child does present problems when he behaves in a way that is not expected of a child who looks like him. This is the challenge of invisible disability. Parents of children with autism who have an obvious difference face very different challenges of acceptance and prejudice, but both of these challenges are cut from the same cloth. Just as their children and mine vary wildly from each other and where they stand on the autism spectrum, we all have the same basic common ground.