April 2nd is World Autism Awareness Day. I announced it to my fourteen year old autistic daughter this morning as I woke her up for church. In the past we have embraced this day as a day to ask questions about her autism and for us to celebrate the wonderful young woman she is.
Today was different. Today she proclaims that she only has a “little problem” with autism and doesn’t want to talk about it or acknowledge it in any way.
I get it. She is fourteen now, and although she is clearly emotionally younger than her chronological age, she IS starting to exhibit some pretty normal teenage behaviors – one of them being a desire to blend in, to not be seen as different. Sometimes she can do this. Any stranger looking at her in the store or on the street may not even know anything about her is different. The “classic” autism behaviors that marked her out as a young child – the flapping, stimming, spinning, poor eye contact – are mostly gone from us even though at times her eye contact is still not the best. The biggest issue she faces is her speech, but you wouldn’t know that unless you were trying to have a conversation with her. And to meet her casually you wouldn’t know, unless you have a conversation, that academically she is well below her peers.
The struggle we face now is her believing that she can do things that we know she CANNOT do. When she tried out for the lead in her middle school play, we KNEW she wasn’t capable of handling the role, but in consultation with the drama teacher, we let her try out so she could experience failure. When she wanted to be on the volleyball team, despite being very uncoordinated and unathletic, we let her try out (in consultation with the volleyball coach), again so she could experience failure. Wonderfully, the volleyball coach made her a team “manager” so that she could attend the games as a helper, and she loved it.
Last month she wanted to try out for the softball team, which again, seemed ridiculous since she is uncoordinated, unathletic, and hasn’t picked up a ball or bat since she played t-ball in her special ed program as a 1st or 2nd grader. I was actually afraid she’d get hurt. Girls at the 7th and 8th grade level throw and hit hard and when the ball comes at you, you need quick reflexes. I explained to her as gently but as honestly as I could that I didn’t think trying out would be a good idea because she could get hurt, and that she would be competing against girls who had been playing for years. She was NOT happy.
I am so grateful that she has come so far. I am thankful that she is able to be in a special education classroom in a typical school, and for her many interactions with her typical peers. I am thankful that she has a wonderful self-image. I know from my older daughter (and from my own experience) that many adolescents suffer from a very low opinion of themselves, believing they’re ugly, stupid, fat, etc… and she has little to none of this. But I AM concerned that this normal desire to “fit in,” indeed her BELIEF that she DOES fit in – even though she clearly has problems – will cause her pain.
Every mom wants to spare their kids pain if possible. I feel the same about my other two children. But my protectiveness of her is greater because her innocence is greater. She is vulnerable and she doesn’t know it. She may not want to remember World Autism Awareness Day, but I do, because I still see it in her even if she doesn’t. And I still see the world as a scary place for her, and want the world to be “aware” of how far we still have to go until it isn’t.