A few weeks ago, during a party, I asked a question of a Ouija board: will my oldest son live independently? The Ouija board surprised me by saying no. I was dismayed at first, and then I remembered: 1) that question can be interpreted in many different ways, and 2) it was a Ouija board, for pete’s sake.
I mentioned it to Karla later, not thinking much of it. I had no idea she proceeded to stew on my question for several weeks.
Today, she brought it up. She asked me why I would ask that question, and revealed that she was upset to find out that I still had that kind of doubt about Nick. She wanted to know what it was that led autism parents to maintain such doubts about their kids’ abilities and potential even when those kids were thriving.
I had to think for a long time before I could answer, mostly because I was arguing with myself about whether I truly had those doubts. I didn’t want to admit that it was true. It was gut-wrenching to admit it. Nick has come such a long way since we gained Karla’s guidance. He’s thriving at home, school, and his fencing club; he maintains friendships and delves deeply into hobbies; and he is becoming a mature, responsible, helpful young man. Yes, he still needs a lot of support, but he is learning to advocate for himself, to choose carefully which situations to join and which to avoid, and to regulate himself emotionally. We are on track with our plan to teach him to be his own advocate and arrange his own supports as an adult. Looking at him today, there is no reason to think our plan won’t succeed.
So why did I feel the need to even ask that question? I didn’t wonder about my other two thriving kids. Why only Nick? Why only my autistic kid?
I had to admit that I was putting doubt before hope. No matter how much hope I felt or how much promise Nick showed, I had to acknowledge that I held a doubt so pervasive that it was the first thing I thought to ask about, however playfully, when presented with a chance to see into the future.
It was a painful realization, but an important one.
With my NT kids, I automatically put hope before doubt. Sure, I may at times wonder if they will ever learn to keep their rooms clean or put the dishes in the dishwasher, but even if they bring home lousy grades or seem to spend most of their time doing extra chores for bad behavior, I never think to question whether they will be able to live on their own one day.
But with my autistic kid, on the other hand, I now see that I have been putting doubt before hope. I have been thinking about “if” rather than “when” he will meet my very reasonable expectations.
Karla pointed out that just as our kids absorb our emotions, they also absorb our expectations. No matter how many positive, encouraging words I use, if I don’t truly believe that Nick has every chance in the world of becoming an independent adult, he will know that, and he won’t believe it either. What chance does he have then?
It’s hard to shove that doubt aside when it has been force fed to you since your child was diagnosed. I think every autism parent has heard the same messages that start with “your child will never…” or “IF he can learn to…” and we internalize those messages whether we mean to or not. Our thoughts and assumptions about autism are framed for us in a negative light from day one. But why should my expectations for Nick be set at the time of his diagnosis? I would never limit my expectations for my NT kids based on their abilities at age 8.
I now challenge myself to reframe my thinking. I will put hope before doubt for all of my children. Of course I will have doubts from time to time, but I will make sure that the pervasive undercurrent is always hope.