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

25 Mar

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.



5 Responses to “Autism Awareness Month is coming up, and you know what that means!”

  1. lisa March 25, 2016 at 2:28 pm #

    My son has basically the same story as Maura. He is 6 now. But now that he is older we are going to do the entire evaluation for autism. We never did it because he didn’t fit the norm of autism either. We want to do it now because he does have some characteristics. His doctor has always said his brain is hardwired differently, but I think they think it is more of a cognitive issue. He was very delayed and he does has apraxia the whole motor planning low tone all that stuff. I want a diagnosis. I guess we have one right now that is a intellectual disability. He learns, but at a much slower pace. But he has those autistic characteristics mostly the sensory stuff like spinning, rocking, always moving and vocal stims as well. He has a few obsessions. I don’t really know. I want to make sure we aren’t missing something. I guess its one or the other. He is social and he is also vary able to go with the flow. Autism means more service and better schooling possibly. He could do ABA. Beside language he isn’t too far behind, but that gap grows and grows. His fine motor and gross is very weak. My uncle has a intellectual disability. He has has a good life. Its not always been easy. The thing is he never really had the speech problem as far as I know. Everyone is different. Whether it be autism or not I wouldn’t care. It was nice to hear when he was 3 and 4 but then I started to notice that he was actually worst off then those with autism. I mean I know there are those who really struggle but its different not better or worst. It will be really strange to all sudden say he is autistic if they up confirming it. Because then we would really look like we were in denial, but it was never me. The doctors don’t know everything. Intellectual disability is not autism. You can have both but you can certainly have one without the other. Some autistic kids are social though. I think that is a misconception, they may not know how to interact. But you can the autistic children are more in their own world. I am for sure no expert.

  2. Jody March 25, 2016 at 10:44 pm #

    Why do total (well meaning) strangers feel they have the right to tell us about our children? Or question our doctors? It is so bizarre! Do we walk up to random strangers and diagnose them with things? I have a child who has Asperger’s Syndrome. (Yes, I am aware that is no longer a clinical diagnosis since the release of the DSM-V. So is my kid. She likes her label and she is sticking to it.) Being a girl she presented differently from the start, and being homeschooled since preschool failure happened, she has had some hard core social training. I really tire of folks saying, “Are you SURE she is Autistic? She’s SO SOCIAL.” Thanks. I appreciate you noticed. Now spend 24 hours with her. Get to know her, “I just spent 4 hours in public, and I need to go freak out now” side. She is an awesome kid, and she will make her mark, but trust me as her parent, and her doctors, and the nice school system folks who have been so kind as to re-evaluate her. She is indeed Autistic.

  3. Charlie Shotsky March 29, 2016 at 10:12 am #

    Our granddaughter had several of the same symptoms as Maura. Before birth, they first told us she did not have a brain. Then they said she would be a vegetable. Then they said she would never walk or talk. When she was born she had a problem keeping her milk down so they did a test to see if there was an obstruction. What they learned was that Rachel was missing her three lower vertebrae, which in turn meant that the nerves which these vertebrae usually provide to the lower body were not there. At the time there were only seven other children with this diagnosis. As a result of intense attention and therapy, Rachel eventually learned to walk, run, swim and ride horses. The horse-riding was very important as it strengthened the muscles in her legs and butt and helped her learn to walk. Altho’ she never could speak (except for a few sounds the family understood) she did get a computer ‘talker’ when she was about eight. It changed her life, and ours, as we could finally realize just how intelligent she was and how much she could understand. I’m writing this just in case Maura might be missing a chromosome. I’m not sure all the ways to determine that. If you wanted to speak with my daughter, I’m sure she would be glad to give you the name of the diagnosis. I simply cannot remember it. I’m inspired and touched by your blog and smile as you share the stories about your incredible little girl.

    • phoebz4 March 29, 2016 at 11:07 pm #

      We have actually done some chromosomal testing – she has all the ones she should, no extra or missing. I am glad your granddaughter is doing awesome! And you’re right, horse back riding is incredibly therapeutic.

  4. Shelley Weeks Lehner March 30, 2016 at 7:50 pm #

    again, I’ll say it: Mayo Clinic.

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