Since Caleb has been diagnosed with autism I have already had people say the craziest things to me. Most comments are innocent, and honestly I am probably just as guilty in the past of saying something foolish to a parent of a special needs child. However, there is one particular statement that I have gotten that I want to address. I’m pretty patient with people just not understanding; and due to my own ignorance on things at times, I have zero judgment towards any of this. I just feel like as an autism mom I need to say something for all my fellow well meaning friends that have impulsively let something glide right out of their mouth without realizing the weight of their statement. I would want someone to educate me! In fact many times in my adult life I have had kind people inform me that my words or perspectives may be off or unhelpful in some way.
So here it is...
“He has autism? 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 entire life since Caleb was about 3 years old has been absolute madness; so Nate and I are actually relieved to have some answers. So when you say something like that, it discredits the importance of that diagnosis and what it has meant to us.
Caleb is high functioning on the spectrum, which means that a lot of what you see from him on the surface is at a high functioning level. He is very smart intellectually and can for the most part carry on an age appropriate conversation. However, below the surface he struggles to understand reasoning, people’s opinions outside the realm of his own ideas, and 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. 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 to him 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. He will only eat 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 for no reason. 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 completely understand that it is very easy to not see or experience any of those things if you are not closely interacting with him day to day! Like I said, this comment is well meaning and meant to be kind, and it comes from a place of a limited view of how he behaves everyday. I just feel that there are so many other things that you can say in the moment. Most likely the parent you are saying that to, is not surprised that their child has autism. Therefore your well meaning comment unintentionally disregards all the struggles and hurdles they have had to face up until that point. So next time someone tells you that their child has been diagnosed with autism, 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.
I hope this helps some people! Feel free to share this blog as a way to spread autism awareness! That way we can all support and love each other well, even when we don’t fully understand 🧩
