How Do You Explain To A Child With Autism That They Have Autism?
By Gena Mann
Given that autism is a spectrum disorder and no two children are the same, parents of children with higher functioning forms of autism may struggle with this more. For my husband and I, we have the added challenge of describing “autism” because we have two magical sons, both with autism, one very high-functioning and one not so much (as well as two neurotypical spectacular daughters).
Our family as a whole share the experience of having boys-- on both ends of the spectrum--who seem like they couldn’t possibly have the same diagnosis, living in one house. We started acclimating to the word “autism” shortly after our oldest son’s diagnosis at two to educate people outside our family and eventually to his siblings (as they got older) so they would understand why he wouldn’t respond to their questions or play with them in the way other children did. We chose a simple explanation for our kids; Jasper’s brain and body system work differently, it’s harder for him to understand language and express himself. But he has other gifts, he will engage with you in other ways to be kind, be inclusive because he needs your patience. When our second child, Felix, was diagnosed with autism at age five, it was a very different autism, more of a dipping of the toe on the spectrum kind, the kind where our son would be verbal and connected and more “quirky” than anything else. Same word, completely different hue on the spectrum. So now we had to amend our definition of autism, both for ourselves as parents and for our entire family….especially for our higher functioning child who could actually understand a bit better what autism is, and could see that while they shared the same diagnosis he was vastly different from his non-verbal brother.
The best we could come up with at the time was to tell him that he has “a little bit” of autism whereas Jasper has a lot…But this simple explanation needed to evolve as Felix could understand more of the nuances of autism and how it affects him (and Jasper) in different ways. Felix’s autism would cause him to frequently get “stuck” on different topics (he can get stuck a lot), and sometimes tends to talk about the same topics repeatedly, not mindful of whether other people want to talk about those things. So my husband introduced to him the idea that perhaps he has a very special “sensitive brain.” This, he loved and embraced, and began to use the term “sensitive brain” as both an explanation for why he still needed to sneak in an age-inappropriate Elmo video sometimes, as well as for why deeper social interactions were harder for him to grasp. His self-awareness is both a blessing and at times a challenge and fortunately--sensitive brain or not--his self-esteem is better than most young teenagers. One day, unprompted and independently, he wrote this essay to explain what it means to him to have a “sensitive brain”.
My Sensitive Brain. By Felix Mann
My name is Felix Mann, and I am 14 years old. I have a very sensitive brain, which is due to my autism. This means that my brain gets stuck on less important things. Most of the time, my brain gets sensitive at home, at school, at camp, and while I am hanging out with my friends. When I am at school, I have difficulty taking tests. My sensitive brain will focus on something else that the teacher said that morning, and I won’t be able to concentrate on the task at hand. A stress ball helps me regain my focus. When I am with my friends, I have difficulty having conversations. My sensitive brain makes it difficult to listen to what others are saying and respond appropriately to their thoughts. What I often do is talk about myself. It is helpful when my parents, teachers, or friends help me redirect the conversation. My sensitive brain finds comfort in watching shows that I loved as a little kid. I will watch the shows here and there, but as long as I am in a quiet spot where nobody is looking. In the last few years, I started to have a special interest in music, and because of my sensitive brain, when I hear music in my head, I immediately know the chords, and I can teach myself to play the songs. My sensitive brain also makes me so picky about eating and drinking. I only eat a few different foods, and I also only drink water and seltzer all the time. Having a sensitive brain also gives me a great sense of direction. I can memorize the signs around the town, the flags of different countries and states, and I can memorize the way to school and places that I go to often easily. These are some great reasons why I have a sensitive brain.