Since my son Caleb has been diagnosed with autism, I have already had people say the most absurd things to me. I understand that most comments are innocent—and honestly, I know that I am just as guilty of saying foolish things to people out of ignorance. However, there is one particular statement that I have gotten MANY times that I want to address. I would want someone to educate me! In fact many times in my adult life I have had people inform me that my words or perspectives may be ignorant in some way. I learned from those experiences, and growth occurred in me because of it.
So this is the comment I have heard as a response to me telling someone that Caleb is autistic…
“He is? I’m surprised!”
Now, I am completely 100 % aware that this statement is meant to be nice, and an attempt to make me feel better. Here’s the reality though: I am not surprised. My husband and I are actually relieved to have some answers. So when you say something like that, it discredits the importance of the diagnosis and what it has meant to all of us—especially Caleb.
Caleb was diagnosed as “high functioning”, which means that lot of what you see from him on the surface is at a “high functioning level”—or so they say. However, I do not like function labels and I know that many in the autism community feel the same way. This is because autistic people’s level of functioning is measured through the lens of neurotypical behavior—which is ableist, harmful, and quite honestly makes no sense at all. I strongly dislike function labels.
Because of all the misinformation regarding autism, many people will look at my Caleb and never guess that he is autistic. Below the surface though, he struggles to understand reasoning and people’s opinions outside the realm of his own ideas, and he thinks/feels/communicates in a way that at times only makes sense to him. He can do the same thing for 3 hours, while in other circumstances not be able to sit still or focus. He hates transitioning from one thing to another and will throw a fit even if what we are doing next is fun to him.
Certain smells are so gross in his opinion that he cries if he smells them. He can be the loudest person in the room, and yet he hates loud noises and lots of people talking at the same time. He has to put ketchup and mustard on his hamburger the same way every time otherwise he gets anxious and doesn’t want to eat it. The only pasta he will eat is spaghetti, and if you try to tell him that it’s a “type of pasta” he will cry and fight you on it.
He rocks back and forth and smells his fingers constantly. He appears to look at you while talking but has mastered the art of looking just past you as a way to seem connected in that moment. If you look really close while he’s talking, a lot of the time he repeats everything that he’s saying in a whisper. The list goes on.
I know that all of those struggles and behaviors are invisible to most people, but they are very real and big to him. Therefore that well-meaning comment, unintentionally disregards all the struggles and hurdles that he has faced up until that point. And if a person is autistic and you “are surprised”, then that is an indicator that you don’t know a lot about autism—which means that you are not at liberty to make a comment like that to begin with.
So next time someone tells you that their child is autistic, my advice is to first and foremost ask them how they are feeling about it. “You finally have answers! How do you feel about that diagnosis?” This communicates that the diagnosis has meaning and that you are more interested in understanding their emotions than the need to say the right thing. To an autistic teen or adult, I would listen and respond positively rather than react “surprised” or give your opinion.
If you ever reacted that way in the past, it’s OK! This isn’t meant to put you down or make you feel bad—It’s meant to educate and bring awareness. I have to mention that because unfortunately we live in a culture where many people can’t seem to grasp that it’s OK to change behavior that is harmful. We are so quick to make the statement “everyone’s always so offended these days”, but let’s stop to ask ourselves why that is. It’s because the society we live in, is no longer silencing all of the minority voices. And if you are offended by THAT, then you are viewing those situations through your own lens of privilege, and should listen to those effected by that particular problem. I can’t say that I am one of those voices! I will own my privilege. But personally, these times have empowered me to speak out my own truths, and to speak on their behalf. This is what has fueled me to speak out so assertively with the autistic community.
This is important. I believe that we are ALL responsible to educate ourselves on not just autism but all forms of disabilities—because only then can we all support and love each other well.
…even if we still don’t fully understand.