The time is coming for the talk. She is entering the second grade, and she is going to soon enough realise something that has been, until now, nipping at the tail of her consciousness: something is not right.
She is going to wonder about herself, and why she can't say some things she wants to say. She is going to wonder why she is so different from her peers. She is going to look at me to have an answer for her, and I am going to have to be vigilant. She won't be able to ask it straight out. I will have to see it in her eyes.
I'm already seeing shadows of it, lurking in the corners of her mind.
So I have been thinking about it a lot. I have been wondering how to broach it. And I am stumped.
"I'll tell her she has superpowers, like the Hulk." I offered up to my wife.
"Oh good," she replied. "Compare her to a big green monster that can't express himself verbally."
I asked a friend, who also has a child with ASD, suggested. "Have you got a cupboard under the stairs?" he asked.
"Actually, I do."
"Then tell her she's a wizard."
"I don't know how that will help."
"Fine, then. Stick with telling her she's the Incredible Hulk."
Another friend, whose advice I've come to less and less rely on, had a radical suggestion. "Tell her she's autistic," he said, and I almost fell of my bar stool.
"Keep your voice down," I said in a harsh whisper, looking around frantically. "I'm not supposed to use that word. I'm supposed to say, 'she's someone with autism.' "
"Oh," he said, and looked into his drink. "But that kind of sounds like she's in a committed relationship with some guy who has a weird name."
That is the rub, however. I am tempted to sugar coat it and tell her a white lie, like all the other lies we tell them to help them grow up, such as the tooth fairy, or Santa Claus, or democracy. I am tempted to make something up because society is pushing me to do it. I'm not supposed to shackle her with a label at such an early age.
Every parent walks this delicate line. Every parent has to decide how much of life's load can be carried by their children, and how much of it they have to carry themselves until their children are old enough to understand.
For parents of autistic children, the choice of the burden is harder to make. If they are high functioning enough to understand they have autism, you are faced with a form of Sophie's choice: do you tell them they are autistic and risk their despair? Do you not tell them and risk their confusion?
Is it better to let them know who they are when knowing who they are could keep them from becoming who they might be? Or is it better to let them know who they might become when they might not get there unless they understand who they are now?
I am lost. I hope someone out there has a good answer for me.
My son was 7 when he was diagnosed with high functioning autism. We told him straight out. Told him he had something called autism. That autism is a way of describing how people's brains work. That everybody's brain works differently, but his way of working actually had a name. Said that it explained why he got really upset and really angry when he didnt need to be, why he found making friends hard, why he got scared and panicky, why he didnt look people in the eye. But also that it explained why he was incredibly smart, why he could read incredibly difficult books, why he just understand anything mathematical without being taught it, why he could remember everything about dinosaurs and maps and timetables and why it meant that some day he was going to do something incredibly amazing. Then we googled famous people with autism - einstein, da vinci, bill gates. He dealt with it all extremely well, I think you have to be honest and tell them when they are young, otherwise its like being told when you are an adult that you were adopted! We also bought him a teddy wearing a shirt that said AUTISM -Always Unique Totally Intelligent Sometimes Mysterious. Good luck with your decision!ReplyDelete
See, I always suspected AUTISM was an acronym for something awesome. Thanks so much for your comment. It was very helpful.ReplyDelete