I became an autism advocate on June 19, 2008, when my son, Michael, was diagnosed on the spectrum at three. It’s been a decade, and you would think that with the ever-flowing stream of information available to us in our online culture that people would be more educated about and more understanding of autism. Unfortunately, this is not the case. As a whole, there is still a lot of ignorance and misconception about autistic children, and it infuriates me when I see people treat Michael differently when they learn he is autistic. My son is not broken, and you don’t need to treat him like he is. In fact, there are probably several misconceptions you will have when you hear Michael is autistic, so let me clear all of them up for you. Here is everything you need to understand about my autistic son.
This is one of the most important points I can stress. Just because Michael has a diagnosis of autism doesn’t mean you need to act differently around him or towards him. Do you act differently around people who have been diagnosed with diabetes or heart disease? As far as I’m concerned, his diagnosis is no different. Autism is a part of who he is, but it isn’t all that he is. He’s a typical 13-year-old boy. He has likes and dislikes. For example, he loves animation and all things Pixar. His dream is to work at Pixar someday. Engage with him about Pixar movies or how animation varies when done on a computer versus when it’s draw by hand, and he will talk with you for hours. He’ll even show you the programs he uses to create his own animation. Engage with him about sports, for example, and he’ll be antsy and make it clear he wants to disengage because sports aren’t something Michael gets excited about. Sounds pretty much like every other kid you know, right? That’s because he is like every other kid.
Michael has language processing disorder. Since his brain isn’t always paying attention, there are times that he hears what you are saying, but his brain doesn’t process it right away. Sometimes he needs a bit more time, so give him time to process the question fully. Be warned, however, that because he knows it’s rude to not answer when people ask you questions, he will sometimes answer with standard responses to the most commonly asked questions. So asking him how he likes school this year may result in a response like, “I’m good.” This is because he knows a standard question people ask when they engage with you is, “How are you?,” so he has an answer prepared if he doesn’t quite understand the question. Instead of turning to me with a look on your face like my son is an alien, simply ask your questions again (but not louder since he isn’t deaf and doing so just makes you look ridiculous). Chances are the second time will result in a more appropriate answer. Again, this isn’t an issue all the time. Michael’s brain works like a circuit board with a short. You never know when that short is going to trigger, and most times now that he is older, it happens less frequently. Nonetheless, be considerate.
It is common stereotype that autistic children are incapable of feelings. In some cases, yes, there are children who have a harder time understanding or expressing emotions. Assuming this is the case for all children is wrong. Michael experiences very deep emotions. He’s very sensitive, and his feelings get hurt easily. If I am upset with him about something, he is unable to do anything until we clear the air. He’ll apologize and even insist on a hug to ensure everything is good between us. He gets nervous when he has tests like any other kids his age. He tells me daily that he loves me, and if I’m hurting, he does whatever he can to make me feel better. On one occasion when I was sick in bed with a migraine, he drew me a picture of a flower and hung it up next to my bed to cheer me up. Does this sound like a child incapable of emotion? I know several “typical” adults who aren’t capable of that level of emotional depth. They could learn a lot from Michael.
Michael’s diagnosis came with a plethora of issues he has had to learn to overcome. Let me break them down for you:
- Hypotonia (low muscle tone): He fatigues easily.
- Sensory integration disorder: His senses are overly sensitive.
- Hypermobility (double-jointed): It’s hard for him to hold pens or use utensils well.
- Hyperlexia: He can memorize almost anything, but this disorder relates to his language processing disorder.
- Emotional Immaturity: His maturity level is about a year or two behind his peers.
When I mention any of these obstacles to people in conversation, they automatically take on a tone of pity, and they start to treat Michael like he’s fragile, dumb, or weird. His diagnosis makes him none of these things.
While these issues have presented challenges that have frustrated Michael, these also contribute to the very best parts of him. The hypotonia made sports difficult for Michael, so instead, he decided to be in band, and has become an amazing drummer. The sensory integration disorder makes Michael especially ticklish, and when he gets going, that laugh could brighten anyone’s day. Because it’s hard to write, Michael prefers to type on the computer, and his word-processing skills put mine to shame. The emotional delay means Michael can be a bit silly, so he’s drawn to sitcoms. This coupled with his hyperlexia that gives him the skill of memorizing anything results in Michael memorizing episodes of his favorite shows and often reciting scenes that he found most entertaining. We have a lot of fun with this.
These are all the little things that make Michael who he is, and I wouldn’t change any part of him and neither would he. Michael knows he is autistic, but that’s just a word to him. He knows that he struggles at things and that he has to work harder at school, but he accepts it and doesn’t dwell on it. Since he doesn’t understand that he is different based on social standards, he is unapologetically who he because that’s all he knows how to be, and this makes me proud. He’s my imperfectly perfect son.
We tell children that they should strive to stand out and be who they are, but when we meet a truly unique child like a spectrum child, we don’t embrace the difference; we emphasize it by freaking out and acting like the child is something other than a child. Our behavior changes and becomes awkward. I often wish I could record people when they interact with Michael and play it back to them so they can see how ridiculous they are being. Having experienced this type of behavior for a decade, I have learned one very important lesson that I have shared with Michael to help him cope with people’s reactions to him, and I will leave you with that lesson as well. Just remember that when you act differently around my son or tell me that you can’t relate to him because he’s autistic, you are saying way more about yourself than you are about him.