There. I’ve said it out loud.
I spent all last week watching people ramp up for “April is Autism Awareness Month!” and I felt myself inwardly cringing. I could feel myself getting twitchy and annoyed. I started to write about it, only to delete everything in fear that people would call me a horrible bitch – because that’s how the internet works sometimes.
Today though, I posted something about orphan diseases on my personal Facebook page, and I realized why Autism Awareness gets to me so the way it does – It reminds me how much we have been alone in all this. How so many people are alone in their own journeys. How many things people are blissfully unaware of while they “light it up blue” or wear red, or whatever the latest campaign is for autism.
Were you aware that last month was Hemophilia Awareness Month? Probably not.
The thing that has always gotten to me was that like so many people with children with autism, we started life with Maura thinking she was fine, and then signs started popping up during her toddlerhood. We too went for an autism evaluation at age two – and got a cheery “Well, she’s definitely not autistic!” response and sent on our way, still clueless as to what was going on with our child. By age three, we had exhausted all the tests and were told to come back in two years unless something else changed.
“Yes, but do you think she has something?” Josh asked the neurologist as Maura played with toys on the floor.
“Oh, she definitely has something!” the neurologist stated matter-of-factly. He was the first to say such a thing, and it was a relief to hear, because up to that point, we were still being told that she *mighty* outgrow her “delays” while other people found creative ways of telling us that maybe we were making a mountain out of a molehill, that Maura wasn’t that delayed, that we shouldn’t complain to mothers going through “real” issues with their children.
Yet that wasn’t the moment that stuck with me. Most people talk about the devastating moment when it’s confirmed that there is something wrong with their child. We weren’t even given that moment because the doctor’s next words hit us harder.
“But you may never know what that something is.” he continued. “She’s too healthy and has no regression. Medical research just isn’t interested in kids like her. There’s no money in it.”
It wasn’t until years after that day that I stumbled upon the term “orphan disease” –
a disease which affects a relatively small number of individuals and for which no drug therapy has been developed because the small market would make the research and the drug unprofitable
Orphans. That really does describe what we went through in the early years. We were on our own in so many ways. I tried getting Maura on a state aid program when she was three, to help pay for all our doctor appointments and therapies that she could use, only to be told to we needed a “qualifying diagnosis” – and “Something” wasn’t one of them. I looked up therapies that might have worked for her, but part of the qualifications to get into the therapy was an autism diagnosis. I had another mom tell me to my face that we had it “lucky” because Maura didn’t have autism, and another ask me if I was “afraid” of the autism diagnosis.
That one made me laugh. Afraid of autism? They had no clue how many other syndromes and conditions I had looked up, in order to discover what Maura had, ones that were a lot scarier. I would have gladly taken an autism diagnosis – it would have opened so many doors for us!
And then, because this is just how my life works, when Maura was about four, we found ourselves in a small office at the elementary school talking to the school psychologist, who very delicately informed me that one of my other children had Asperger’s.
My response was a shrug and “Okay.”
He blinked, then blinked again. I guess my lack of devastation, wailing, and gnashing of teeth threw him off. “Well….um…how do you feel about it?”
I pointed to Maura. “See her? We’ve spent three years trying to figure out what’s wrong with her and have gotten no answers. So anything that comes with a label and books and support groups, I’m okay with. Asperger’s isn’t scary to me.”
It wasn’t. There are wonderfully smart and quirky people on both sides of our family. Our Aspie? Totally blends in with the rest of us. The diagnosis didn’t change how we viewed him, just helped the school understand him better.
And yet, the fact that I now had a child “on the spectrum” suddenly gained me street cred. “Ohhhhhhh….you’re one of US!” Well gee whiz, I thought I always was, thanks to Maura. We’ve sat in the same school meetings, shared therapists in Early Intervention, dealt with so many similar issues.
But some couldn’t see how much we had in common despite the different labels. They were so busy making sure their child with autism was accepted, that we were aware, that they didn’t realize how they shunned Maura and me.
It was frustrating, annoying, and sad. Because we could have learned so much from each other, supported each other more. Yet being an orphan meant I had to learn about all the other orphan diseases and rare syndromes. I am more aware about these things than I was eleven years ago, thanks to Maura. Because we’ve been orphaned, I’ve learned to accept everyone, whether or not there’s a label or cause or color scheme. I can keep another orphaned family from feeling alone, because I know what it’s like to feel alone, and remember how grateful I was to those who did reach out to us and supported us.
And that’s how I should leave it, right? I can hear people saying “Let it go” and “Move on, stop living in the past”. But it’s not the past. We’re still orphans, sitting on the sidelines. I remember watching our state push for mandatory insurance coverage of autism therapies – aka speech therapy, physical therapy, occupational therapy. All therapies Maura has had (and are still getting). Therapies I’ve had to pay out of pocket for sometimes. But we wouldn’t have qualified for this insurance coverage because Maura isn’t autistic, and it only benefited those with autism.
Once again, we were left out in the cold.
And every April, someone else learns about autism, and decides to diagnose Maura for us, and rejecting the idea that maybe, just maybe, in ten years of testing, we would have noticed this. They discount not only our opinion, but the opinion of Maura’s teachers and therapists, people intimately involved with both our child and children with autism. “Do you really trust them?” they’ll say. More than you, complete stranger who’s never actually met my daughter. Please don’t imply that we haven’t tried hard enough, or you will get our list of tests and specialists.
Meanwhile, I watch people donate to fund autism research as I sit with the knowledge that no one seems to care anymore about what my daughter has. We saw a new neurologist a few months ago, and I had questions about certain syndromes, if it was possible that was the root of Maura’s issues, and got a lecture about “accepting” my daughter for who she is, and a label wouldn’t change anything, basically, stop trying.
Yes, we’ve even been orphaned by many in the medical community at this point. And that is something we had to accept years ago.
I’m not saying don’t be aware of autism. Some of the most awesome people in our journey have loved ones with an autism spectrum disorder, or are on it themselves. All I am asking, is that while becoming aware of autism, be aware of all the other less media-savvy syndromes and disorders out there. Read up on hemophilia. Learn about ichthyosis, or Cri du Chat, or Bilateral Perisylvian Polymicrogyria or Ehlers-Danlos syndrome, or 9p Deletion Syndrome – and yes, learn about all the types of autism as well. Learn that there are people everywhere dealing with these sorts of challenges every day, awesome people who are deserving of your acceptance, no matter which month it is.