No, seriously, I tend to do this little eye-twitchy thing when I hear the word “autism”.
I know, I’m a horrible person for feeling this way, and may make myself unpopular with people for stating this. I don’t blame the word, or the condition, or the kids who have it. But hear me out and maybe you’ll forgive me for feeling this way.
It first started when Maura started preschool. She was placed in a special ed preschool, and my thoughts on it were “Great! I can meet more parents who are in the same boat as us, and we’ll have so much to chat about.” I mean, I already had other friends who were parents of great little beings who were deemed “normal”, obviously I would be able to make friends easily with parents who knew what life was like with a great little being who was also a bit special.
Oh, the naivety of it all.
I was stunned by how not accepted I was. See, a few had formed their own club, their “My kid has autism” club. And I was not allowed to join. They asked if Maura had autism, I said no. They said “Are you sure?” I said “Oh, we went to this doctor at the Big Deal Hospital and they told us that Maura definitely doesn’t have autism.” The one response was given to me with a smirk and “Oh, they told us that to, but they were wrong.” The “and you could be too.” was implied. They would share information with other parents of kids with autism, information I could have used as well, but wouldn’t share it with me.
I viewed us all as people who may not be in the exact same boat, but we were on the same lake and had lots in common. They saw me as “the one whose child doesn’t have autism”. They would go on about their child’s issues, and if I said “oh yeah, we go through that”, it wasn’t the same. I guess because I didn’t bitch and moan about how tough life was.
Now I know what some of you may be thinking – “Oh, you just read them wrong!” or “You must be exaggerating!”
I could buy that, if it weren’t for the fact that one of those parents looked me in the eye and said words I will never forget.
“You’re lucky. You’re child doesn’t have autism.”
The ironic part of that statement was that at that exact point in time, if a doctor said to us “I hate to break it to you, but Maura has autism.” I would have kissed the doctor and have been thrilled. At that point, we had spent two years testing her for different syndromes and diseases. I was desperate for a label. I would have been glad to have heard she was autistic. And I thought they were the lucky ones – they knew what was causing their kid’s issues. We didn’t know and knew we may never know.
A year later, I sat in the school psychologist’s office and was told my son had mild Asperger’s. My response was a bland “Okay.” He looked at me quizzically and must have assumed I was in shock, because he then said “Well, how do you feel about it?”
I told him, “You have to understand – my daughter? We’ve spent the past few years trying to find out what she has. Anything that comes with a book and a support group, I’m okay with.” Besides, I already knew the boy was quirky. We just had a name for that quirkiness now.
Ironically, my son’s diagnosis of mild Asperger’s suddenly gained me respect in certain circles. When people would give me the “Are you sure she’s not autistic?”, I could say “Well, my son’s an Aspie.” and suddenly, I was in the know, one of them, the card carrying member of the club. Which I thought was a bit ridiculous because his Aspie-ness was no big deal. Oh, it’s given us interesting moments, like the time he corrected the priest in the middle of Confirmation, but in a big family full of quirky people, he’s kinda normal. And having watched friends whose kids have more challenging versions of autism, I know that what we go through isn’t that major or life-interrupting.
Interestingly enough, Maura has more in common with the kids with autism we know than the son who is actually on the spectrum. Maura has apraxia – a speech disorder that is common in kids with autism. She has sensory issues as well, though hers are sensory seeking, rather than sensory avoiding. She can scream in public over a minor issue just as well as her autistic counterpart, as well as has poor sense of danger. Thirty percent of children with autism can develop a seizure disorder – Maura already has one. Many autism therapies work for Maura as well, and many of the apps for her iPad were created for kids with autism.
Here’s the catch – many times, we don’t qualify for things…because to qualify, you have to have a diagnosis of autism.
Yeah, I have to admit, that brings up the old bitterness. “Oh, we train guide dogs!…for kids with autism, go away.” “We’re a special school that has lots of occupational and speech therapy!…for kids with autism, so sorry, you don’t qualify.” “We’re giving away iPad stuff!…for kids with autism, so you can’t enter.” “We’re fighting to get insurances to cover therapies!…for kids with autism. You still have to suck it up and pay for stuff.”
I get it. I have just one child with her own little Sherlock Syndrome, and there are lots and lots of kids with autism. I’m not saying those kids shouldn’t get help. I’m glad there is all that out there, because it helps dear friends of mine. I just wish that they would be more welcoming to those of us who may not have autism, or any other label actually.
Imagine having to slog through the world of Special Needs with no help or guidance or handy guide to places suited for you child, having to do all the footwork yourself, reading up on sites on the internet, asking around, wondering if you can accost the stranger in the grocery store whose child reminds you of your own in hopes they want to befriend you and be a cohort. Imagine coming across something that sounds perfect for your child only to then read “But this is only for kids with X.”
Imagine being told you’re lucky that your child doesn’t have X, when in fact, what your child has is actually more disabling than what their child has, only it’s not visible yet.
Now imagine not twitching a little when you hear X.
For me X = Autism.
And that’s where I’m coming from.