Autism Awareness Month is coming up, and you know what that means!

Well, for you, it means Autism Awareness.

For me, it means people who don’t actually know us assume I know nothing about autism or am scared of it, and can sense through the Internet that Maura must have autism and so will tell me I should check for that.

Because wow – we never thought to check for autism with this girl.

Okay, actually – we didn’t. Because she never appeared autistic. She was an outgoing, social toddler who rolled with changes. Our main concern was that she didn’t walk on time. Then we realized she was behind on fine motor skills as well. Eventually we picked up that she was also behind in speech and communication.

Yeah, my daughter was that triple-threat! Just not the kind most parents brag about. But Maura was an adorable, drooly, smiley girl who never regressed (it was the progress part that was lacking) so autism wasn’t really on our radar. I mean, we were aware of it, but no one who worked with her thought it was worth checking out.

So when I made an appointment at the (now non-existant) Behavioral and Developmental Clinic at U of M, I was hoping for guidance on what might be causing all of Maura’s delays. I was very concerned that she wasn’t walking yet. They read “Almost two, not talking” and decided she needed an autism evaluation. After an hour of interacting with Maura, the doctor looked up, smiled broadly and said “Well, she’s not autistic!”

As if those were the words I was waiting for.

“Well we know that, what does she have?” I asked.

“Oh, I don’t know, you’ll have to try another doctor.”

And so began our journey of getting no answers. But it was also the beginning of our journey in “Oh, she has delays? She must be autistic! Are you sure she’s not? ARE YOU SURE?”

The thing is, I wasn’t completely positive, not when everyone who had never interacted with Maura kept being so certain that it must be autism. Because…well…that’s the thing they were aware of. It got to the point of ridiculousness, with people asking me if I was just “scared” of an autism diagnosis.

I wasn’t. In fact, I would have happily accepted The Big A. Autism labels opened doors that were shut to us. Autism meant we knew what we were dealing with. Autism meant that it wasn’t something even scarier with “life limiting” extras. I had played the Dr. Google game, and after you read about all sorts of syndromes where life expectancy is early teens, well, autism looks like a pretty decent option in the grand scheme of things.

No, I wasn’t scared of an autism diagnosis. Not after dealing with the unknown.

Yet even my willingness to accept the autism label still didn’t make Maura autistic. At one point, we were doing this specialized speech therapy – there were five kids in the program, each working with their own speech therapist, the parents and caregivers were forced to sit in a little observation room for the duration. It was four kids with autism and my girl. One mom was certain at first that I was in denial. That Maura must be autistic. “Are you sure? How sure?”

But then, after a week of observing all our kids, the mom said “Wow, your daughter transitions so easily.”

I said “Yeah, that would be the not-autistic part of her.”

I’ll admit, sometimes I look at her and wonder…maybe she’s just a rare unicorn of atypical autistic. One that hasn’t been thrown under that umbrella yet. I mean, lord knows our family is quirky enough and Maura likes to do things her own way, so why not? To which I say, we still get to name it. I think Unicorn Autism is a good name.

But for now, she’s not. As much autism awareness that I have gathered over the years, and as much Maura awareness that I have as well, I just can’t connect the two.

So the point of all this? I guess to be aware of autism, but also be aware that there’s a lot of us going through things other than autism. Be aware of the diversity within the disabled community. Doctors don’t know everything. Science hasn’t caught up to some of our kids…because when you have that rare unicorn of a Sherlock Syndrome kid, well, medical research just isn’t that interested in your snowflake. They get more excited by blizzards. Blizzards are sexy. Blizzards get funding.

Meanwhile, we’ll be over here, raising our own kind of awareness. And drinking coffee. Cause coffee.

 

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