On Appearances

I wish I had a dollar for every time I have heard, ”He doesn’t look autistic," "he looks normal,” and “oh my kid does that, it’s normal”.  Such innocent throw away comments that come from a good place and are usually meant to support or make me feel better.  Don’t get me wrong, I don’t blame the deliverer in any way but they do stir a torrent of emotions in me.  After these or similar comments, I usually have an overwhelming need to explain all the difficulties Kerry and I face on a day-to-day basis.  This defensive response is then directly followed by a feeling of guilt because I quickly think of some of Jesse’s ASD affected friends and how much harder their families have it, which in turn leads me to be thankful for what I actually have.  This parenting gig is a roller coaster of feelings that truly never gets easier to ride. -Kelly, Jesse's Mum: Autism Undressed blog that can be found here

Every...damned...day. 

I think that this is the type of "don't know what to say so just input something that sounds appropriate" response like when someone goes to a funeral and says "I'm sorry" to the family of the deceased. My brain never computed that and, well, I wanted to punch someone or something every single time a well-wisher said that to me after my grandparents died. I hated that expression; it was absolutely useless and well, it didn't make ME feel any better, so what then do I say? Thank you?

Well, let's have some fun with this and take it even further: when someone says to me "Jackson doesn't look/behave/(fill in the blank here) like he's autistic" OR even more PC "your son does not appear to be a person with autism" (because PERSON first language is SOOOOOO important, unless you're living it. Yes, I DO say that I AM autistic. My son is autistic. Because it is just a much a part of us as having a brain or lungs or blood in our veins. I do not need to say I am a person with autism- why waste time with all those extra syllables. Okay, another blog post on that one, maybe.) Back to the story...You say our outward physical appearance doesn't match "autism" and my response will not be a good one. Um...say that to me on a bad day and I might tear you to shreds. Most days, I'll blankly smile and mutter something along the lines about how much work I've been doing with him since he was a toddler. I might tell you a few cute stories to help you to understand, but please know, the impulse to throw something is on a low boil. (I blame this on my ancestry...Us hot-blooded Sicilians have been known to throw a table or two...so maybe it's just my roots.)

And it's like Jackson so eloquently said recently, "Mama, what exactly do they think autism looks like? I have autism. I look like me." Exactly buddy. Autism occurs in our brains. Persons who are non-verbal, or have tics, or need to stim may be more what main-stream media has chosen to personify as autistic in the past, but we certainly do know that autism is a SPECTRUM of all sorts of people who certainly do not all have a cookie-cutter outside. So, there is no "look" to autism. 

Don't get me wrong. I get it that people are incredibly uncomfortable and need to relieve pressure from them. Like the well-meaning former friend of mine who told me "Well, I know someone...my cousin's child is a selectively mute child with autism, so it could be SO much worse." It ALWAYS can be much worse. But, when you're living it and staring at your child who no longer wants to do the things he previously loved and no longer wants to have his friends around and suddenly lines matchbox cars up for hours and doesn't want to go to the pool...perspective is the last thing you need force fed down your throat. Comfort and love is needed instead.

Take it from me. Please, don't assume that just because someone "looks" whatever our society deems to be 'normal,' please DO NOT tell them that you cannot believe that they are suffering from X, Y, or Z. It could end your friendship, cause you to miss out on some incredible people or worse, something could be thrown at you. Around me, it might just be something you sit around to play games or to eat. (Note: To this day, I do not have any recollections of table-flipping, but the urge is there from time to time. ;)

Here's something you CAN do: listen. Don't half listen, trying to find a way to make the person feel better. Because, you most likely cannot. But your listening will do them a world of good. Especially when it's not coated with a sugary sweet BS statement that is oozing with platitudes and hurtfulness. And, offer a hug. Or a warm meal. Or a night off. Think of the things that you CAN do...they are plentiful. Most importantly, as soon as "I know someone" even starts to come to the tip of your tongue, swallow it. It might just save your friendship or your table.

Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for feedback and make necessary changes to make this place be a safe place for him too.