When CJ goes out in public, his behavior makes it apparent pretty quickly that he’s dealing from a different deck than you or I would, particularly in social situations. Autism brings its own pack of cards to the table, and no one has any choice but to deal…including CJ.
Like every family, we need food and toilet paper and sunscreen and laundry soap and school supplies and hardware and clothes and the latest Air Bud DVD’s. However, unlike most families, any trip we make into the outside world always offers the possibility of becoming a public curiosity, if not a public spectacle. Some people ignore us. Some people deliberately, conspicuously ignore us. Some make lots of room. Some smile and walk on. And some stare.
One day when I was in a flippant mood, I asked a cop where the law stood on autism and its potential to create socially weird situations. Her reply was that no one can do anything about strange, as it’s not illegal. I found that a bit comforting, as I am sometimes strange myself.
As CJ has matured into an adult, I think we may be becoming more peculiar to the unaware eye. Most people, by now, are able to see a child and see some of the behaviors that autism can cause, and can put two and two together. I don’t think very many people have even considered the idea of an adult with autism. When CJ and I walk through a store together, it can take fellow shoppers longer to put that two and two together, because the back support of dozens of magazine articles read and news segments watched which cover adults with autism just isn’t there…yet. Meanwhile, a whole bag of other explanations can occur to people which can make them intensely uneasy.
And I will tell you, up front, that as a mom in this situation, I have learned to pretty much just ignore it all. The social worry will eat you alive if you don’t shut it down. As long as CJ isn’t misbehaving within the bounds of reasonable social tolerance, I can’t let myself care about all the small individual social crises we may be causing as we push our cart through Target.
Every so often, someone will surprise me and just ask me questions about CJ and autism. While it can be annoying while I’m trying to hunt and gather for my tribe, I appreciate that most of these questions are well-meant and innocent. And I really do try to answer the best I can. I’ve become something of an expert at sorting out the sincere from the mere social curiosity. Some people don’t really want answers…they just want to gloss over the awkwardness and move on without feeling bad. Some questions just make me laugh or roll my eyes. Fact and fiction can get blurred in a hurry when all you bring to the situation is “that Temple Grandin movie” and a vague memory of Tom Cruise and Dustin Hoffman coming down the escalator in “Rain Man.”
I think that many people assume that autism is CJ and CJ is his autism. They see autism as something that completely separates the person from anything ordinary and changes everything so radically, there’s not much left for the average person to relate to.
Fact—CJ is 18 years old. Autism or no, here we are.
Fact—CJ loves sports. LOVES them. Why? I don’t know. He always has. Why does any teenager love sports? He was never interested in cars, trucks or Legos. He would rather bounce a basketball or toss the football around, or watch someone else do it on TV. Meanwhile, my friend has a typical son who is obsessed with Legos. LOVES them. Why? He likes them. And no one questions him.
Fact—CJ likes the color green. Why? I don’t know this either. I like red. Given a choice, I will always choose red. In fact, it’s so pervasive, it’s a family joke. CJ doesn’t prefer green just because he has autism. He likes green because he likes green.
Fact—CJ is funny, personable and well-liked by his peers. Why? Because he has a sense of humor, enjoys some interactions with people, and usually has a great attitude. I would like to say that it is because he inherited from me, but who knows?
No…yeah…I’m going to claim that one. He inherited that from me.
Fact—CJ is autistic. It is a diagnosis. It is a condition. It is NOT who he is.
Fiction—all autistic people have a special skill. Something that somehow counterbalances the “cost” of the autism. Like a gift for numbers or dates or musical talent. NOT true. There are only a small percentage of autistic people who are savants. Most people with autism are just that…ordinary people with autism.
Fiction—Autistic people are, by definition of the condition, mentally challenged (or my all-time favorite, “retarded”. Yep. I went there with the “r” word). CJ has multiple tests measuring his IQ within normal range. Just because he doesn’t use his brain power the same way you or I do, don’t underestimate him.
For example, his sense of time is both unique and remarkable. First of all, don’t tell him you are going to do something unless you mean you will do it NOW or soon! The future is any point from from now forward until he’s tired of waiting. “Yesterday” is any time from a moment ago until his first dim memory of anything that might make his point right now.
Also, he remembers EVERYTHING! Memories may not be in a logical pattern for our convenience, but they are in there, fresh as the day they happened. He will occasionally bring up things that happened years ago. I am talking 10-14 years ago. Usually out of context…or so I think at first. When I finally figure out what on earth he is talking about, I realize what he’s recalling was generally not one of my finer moments. And I realize what I have is a teenager with a steel trap memory throwing my past parental missteps back in my face.
How just plain ordinary is that?
Fiction—People with autism who are non-verbal can’t understand what is going on around them. NOT true. They are very aware and will often react to their surroundings and what is going on and being said. So when you approach that mom pushing the cart in Target with a question, keep in mind that you have a larger audience than you may think. You can insult, hurt or frustrate a person with autism, just like you could any person overhearing what you say. You can also compliment, empower, and lift the self esteem of both that mother and her child by the words you choose and the way you ask your questions.
CJ is first and foremost a person with his own interests, likes and dislikes. He also has a condition called autism that causes both him and us difficulties in his day-to-day life and classifies him as “disabled”. He is my son, a brother, grandson and friend to many who see way beyond the label. Autism has not destroyed or damaged his personality, although it may make it harder for him to express it at times. It’s all still in there…a bright light filtered through an autistic sieve, bursting out in all kinds of colors and angles and occasional glares.
See you at Target.