I am about to write about something I know nothing about. Usually I try to stick to topics I at least know a little something about but this time, I'm in the dark - but at least I'm not alone on this one. Most people are in the dark when it comes to this topic, even 'the professionals' are just taking educated guesses, for the most part.
It's a girl thing. It's a girl and autism thing.
Dude was diagnosed with Asperger's Syndrome when he was 7 years old, in 2007. At that time I had no idea what Autism was, I just knew that it was something I didn't want my kid to have. I spent months reading every book on Autism that I could get my hands on. I spent hours in the local library, pouring over medical journals, psychology textbooks and every obscure reference to Asperger's Syndrome that I could find. Slowly I pieced together an understanding of what Dude's diagnosis meant and how we might be able to begin to reach him. During this time we were also referred to a paediatrician who specialized in treating children with neurological issues.
At our first appointment with Dr. C she asked about our other two children. She wanted to know if we had any concerns about either of them. I looked at three year old Mischief, who was literally tied into the stroller, lest he break free and climb the bookshelves to 'web' people (a la Spiderman) and five year old Crafty who was wearing butterfly wings and sunglasses that looked as though they came from Elton John's personal collection and said, 'No, I'm pretty sure these two are … er … normal."
Every year, at Dude's big check up with Dr. C, she would ask about Mischief and Crafty too and every year I would make some wisecrack about how nutty - but normal - they were and I would walk away from the appointment with a wee twinge that maybe our normal wasn't exactly normal.
When Crafty was eight we realized that things with her collections were getting out of hand and had turned the corner toward hoarding. Her anxiety attacks were also beginning to resemble Dude's Aspergian meltdowns. When we met with Dr. C that summer I finally set the jokes aside and told her about my concerns with Crafty. She immediately set us up with an appointment with a children's psychiatrist. After a twenty minute conversation with the psychiatrist, all of which Crafty spent with her head under my jacket, the good doctor proclaimed that Crafty had an anxiety disorder and we were dismissed.
I spent the next year taking Crafty to appointments at the anxiety clinic every week but we saw little improvement. At the end of the year her councillor admitted that although Crafty certainly had issues with anxiety, there was something else going on with her. I felt it, too. All of her quirks and behaviours didn't stack up right, they didn't add up to anxiety alone. I saw hints of blue in the mix. I saw undeniable traits of Autism.
The next year was spent going back and forth with the psychiatrist and Dr. C. The school wrote letters to the doctors and the doctors explained to me, again, that anxiety 'fits'. It was a frustrating and at times humiliating year for me. The psychiatrist was making me feel as though I was crazy and on an Autism witch hunt. Finally, Dr. C stepped in and assessed Crafty for Asperger's. The test indicated that Crafty was, indeed, on the Autism spectrum. The psychiatrist disagreed.
After some more back and forth and hoop jumping Dr. C and the psychiatrist settled on a PDD-NOS diagnosis. And I exhaled … but only for a moment. Although her diagnosis was very similar to Dude's, Crafty's behaviours, strengths, challenges and quirks were so different. I didn't even know where to begin. And three years later I'm still pretty much in the same spot. Maybe even a little worse off.
You see, as Dude has matured managing Asperger's has become easier. He understand what Asperger's means to him and he's working on bridging the gap between his world and the neuro-typical (NT) world. He can play to his strengths and he's learning to ask for help when he's facing a challenge. He is actively dissecting social interaction to better understand them and replicate the success he is beginning to experience with more regularity. And Crafty is moving in the opposite direction - or so it seems.
The older she gets the more glaring the differences between her and her NT pals become. Where two years ago she could just follow the crowd and be 'that quirky, shy girl' now her behaviour is considered odd, rude, strange and inappropriate for her age. Even people who know her and love her see her issues as a behaviour problem and not as Autism. They see Dude and understand his Autism because it's by the book, ordered and to the letter Asperger's. Crafty's Autism is different. It's chaotic, in constant motion with no sense of reason or pattern. Crafty's Autism is like a wave on the beach, you don't see it until it's thundering toward you and crashing against you and then just as you try to grab hold of it, it's gone again. But it will return and when it does, you are just as unprepared for the encounter as you were the last time.
Most days I feel like I'm slogging uphill, through knee-deep mud with her. I'm at a loss when it comes to helping her make sense of her world and helping the world make sense of her. I feel like I can't get in front of this thing, can't control it or explain it. I feel a world of judgement every time she acts out of the norm yet I can't even find the words to define her for myself never mind the words to explain her to the outside world.
I see her struggle to understand, her hurt when she doesn't belong and her confusion when she offends. I see her heartbreak when she is left out and her devastation at being called a 'retard', a 'freak' and a 'loser'. I see the anger at being toyed with by the other girls in her grade and the rage at her own perceived deficiencies. I see her fear. Her overwhelming fear of being alone, of being misunderstood, of being forever out of sync. And I feel my own fear, the very same fear.
I don't know what Crafty's autism is and I don't really know how to help her. I just know how to love her and how to accept her just as she is.
And, I think, that's the thing she needs the most right now.
Being a typical teenage isn't easy. When you have autism, it can be extra difficult. We need more public awareness about these hurdles as well as compassion towards young people.
~Holly Robinson Peete
PS - This is a brilliant article that outlines the issues girls on The Spectrum have with getting the appropriate support.
Here's also an excellent video featuring a group of girls who have autism talking about autism.