And helping others get their Alice on.
A little fact about myself. I only have 9 toenails. I lost one due to a childhood accident. Now when I tell the story of how I lost it, I’ve never been asked the question will it grow back. Little children do sometimes, but never from adults.
This is typical. Most adults don’t go around saying to a one-legged person, “So when do you expect your leg to grow back?” or “It will get better, just keep working harder, relying on that prosthetic leg is not helping you”. I could never imagine saying that to someone, could you? No, you wouldn’t.
Yet I get this a lot with my daughter who is a HFA, High Functioning Autistic. There seems to be this perception that if we just teach her this, or that, her autism will go away. As if it is just a cold, and given time, it will go away.
People seem to get lost that because she looks like a typical 10-year-old girl, which she is…just one with HFA…they expect her to interact and behave like any ‘A neurotypical’ 10-year-old girl. Which she doesn’t.
Alexis has quirks. Little things that people don’t notice at first, and when they do? Well they become Alice in Alexis’ Wonderland. Just like the story Alice in Wonderland, where a little girl goes into a world, that doesn’t make a bit of sense to her, most people try to correct Alexis, believing it is all just bad behaviour. Not understanding that the behaviour they expect? Is just as alien to Alexis as Alice was to the Mad Hatter. Remember, the Hatter thought Alice was Mad.
I find people perplex by her quirks. Even after I explain her quirks to them, explain that she is HFA, they still just don’t accept it, and suggest she ‘grow her leg back’ so to speak. I am given parenting advice, tips, links to articles. All sorts of stories of how they were raised, and what their parents did to correct their bad behaviour. Because that is how they see her, behaving badly. A product of bad parenting. An extremely ironic stance if you know the history of autism.
Alexis doesn’t say ‘Please’ and ‘Thank You’. She finds those social niceties absurd. Often I run across the Adult who withholds giving her a toy, piece of candy, or some other object till she says ‘Please’. Which to her is traumatic, and frustrating beyond the comprehension of the adult, who is perplexed by her reaction. See, Alexis isn’t a child who needs to ‘learn their manners’, this is akin to me giving you a $1,000,000 check after I won the lottery and telling you I wrote Void on it. Your first response would be “Why would you do that?” and all I can say is Exactly! Welcome to Wonderland Alice, you have just stepped inside my daughters world.
This is the Mad Hatter’s Hat I have to wear sometimes. Stepping into Alexis’ world so I can tell all the Alice’s of the world, why she acts the way she does. I have to play interventionist just so people can understand her, and not get frustrated by her reactions. Which they do often, but mostly, I have to intervene so she doesn’t get frustrated and slip into a traumatic state that will take hours, if not a whole day, for her to calm down.
Alexis does has quirks. She likes wearing certain clothing, namely, pajamas. She even wears them to school. Now you may find this cute, or inappropriate, or weird. Yet trying telling your daughter who is standing in her bedroom, wearing only her underwear, refusing to dress, because you forgot to put her jammies in the dryer last night. And do your best to keep calm as she melts down, crying, with only 10 minutes to get to school before the first bell rings. You see, it’s a tactile thing for her, certain fabrics bother her as fingernails on a chalkboard bother most of us.
Alexis isn’t a picky eater. Provided that the food she eats, say pork chops, tastes the same each time she has it. If I get a different cut, or use a different spice, she notices, and will refuse to eat it.
Then there are the constant routines, things that have to be a specific way or else it sets her off. Her pillow has to be just so, her blanket too. Stuffed animals arranged in a specific order. People coming over unexpectedly, or not coming over. Us staying a friends longer than what we told her originally, or someone staying at our place longer than she expected. Or say a substitute teacher at school, even simpler things like not having the cup for her drink. Those disruptions which seem so mundane to us, that I can say to my 7-year-old son, “It’s fine, Nick”, and it is fine for him, become an obstacle for Alexis, that she struggles to overcome.
To the Alice’s of the world, she seems nothing more than a spoiled brat who isn’t getting her way. Because they only pop into our Wonderland for a short time, they don’t live there like we do. Many want to correct her, or berate her. And by doing so, upset her. They don’t know she doesn’t understand why they are ‘mad’ at her. Nor why doing something their way is ‘proper’ and her way is ‘rude’.
There is more of course, the personal hygiene, physiological issues that come along with autism. Well, at least my daughter. Even being HFA, there are issues. Because Autism is truly a Wicked Little Tailor that makes a suit for each person it affects. You learn to deal with those issues, while working hard to avoid public embarrassment for your child.
Alexis is very high functioning on the Autistic spectrum. By guiding her, help her deal with all the Alice’s of the world, she can find an inner translator for her Wonderland. A Hatter’s Hat, so to speak, that she can give out, to all those who just don’t quite get her quirks. Till that day comes, I don the Hatter’s Hat, get out my translation book, and tell the Alice’s of the world that No, she will not act the way you think she will. And No, this is not bad behavior, or being a brat. And NO, this will not ‘go away’.