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.
Life, His Way 
This is quite familiar to me, too. I think the feelings are further complicated by the natural instinct we all have to think that “independent” or whatever term we use is the same for all of us. My son might not live the same independent way I do – who knows what it might look like! – but that is only a point of comparison in MY head. Casting that aside is frustratingly difficult.
Also, I find myself sometimes getting the wrong message from the challenge of “the now” vs the “well, what would it take for xxxxx to happen.” For example, to live independently, let’s say it’s important to budget money or to learn how to drive or take public transportation. (We can substitute anything for these.) It’s easy to look at the “now” and say “hmmm, not anywhere near budgeting yet. Criminy. Might never be!” and to have that sense shine through. However, when you go through the process of breaking an issue down into the separate skills that are needed or experiences that are needed or knowledge that’s needed (collaboratively, natch) for me, at least, it’s then easier to see a path and to realize how many other paths my son has already run down. That leads to “hope” much more readily. The challenge for me still is to not jump to the “Eeeps. He can’t ever xxxx!” place in my head. I think this comes naturally from the messages of society, the comparisons we naturally do with others, the fear of the unknown, and a stubborn belief that xxxxx is important when it often isn’t.
Challenging ourselves to reframe our thinking is a great goal. It’s fine to look at a big picture issue and break it down… but it’s key to do it from hope, as you say, not from doubt. I’m still working on it, too, and appreciate the way you’ve framed it!
I like what you said. I have a very rare perspective. I am an aspie, but I am also a licensed occupational therapist who is also now an autism life coach.
My mom has more doubts than hope when it comes to me. When I had my traditional OT job, it was like, “OK, perhaps he can finally work and be independent after he pass his probation period.” But when I left the job 3 months later, I decided to pursue other options where I might be able to use my OT skills and/or knowledge.
During this process, I failed a couple of times- translating OT related commercially available text (fell through due to low demand) and working in a startup nonprofit with two other occupational therapists (it is a bust because the situation is a lot worse than what they told me). So, now that I tried something unconventional again (autism life coaching), she was quite skeptical… particularly now that I have to talk to people I connected from social media who are from the autism community to see if I can get business going.
I understand that I need a safety net in form of traditional jobs that paid about half as much as I used to per hour. However, I also feel that a safety net like that are basically clipping my wings… especially since I know and have seen these outside the box ideas can be turned into quite decent paying jobs. So, my thinking is, “Why not me? I can at least do as good a job, if not better.”
Personally, I feel like my mom is like a baseball manager watching his star pitcher struggle on the mound. There are two ways that managers can go about this- pull the pitcher out of the game and let the bullpen try to get out of the jam for him, or let the pitcher work his way out of the jam whenever possible. I believe that if my mom is a baseball manager, she will almost always do the earlier with me. But for me, now I prefer the latter- because I am an adult and that I already had several things in my mind for me to try. I believe that an autistic children (or adult) can benefit from that… as I will these children is that the fact they genuinely try is just as important as the success/failure in the end. Over time, these experiences will hopefully continue to motivate the autistic children to try big and better things that are meaningful to them.
I think the Ouija board meant he will not grow up to be a hermit. 🙂