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Until just the other day, my wife and I consistently beat ourselves black and blue as parents. We figured that we weren’t doing (X, Y, Z) quite right. We thought maybe we were feeding our oldest son (a, b, c) when it should have been (e, f, g.)
From now on, our son will be “a boy with autism” instead of just a boy.
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As it turns out, our eleven-year-old boy isn’t wired for social cues and empathy. We’ve known this intuitively for much of his life, we’ve heard it anecdotally from school teachers and principals. But I’ve been very reluctant to seek a diagnosis for him. I was branded bipolar by the medical model at age nineteen. It has left debilitating scars even if it has saved my life.
With our son’s brand-new diagnosis of autism comes understanding, explanation, and a world of forgiveness. All because of a simple word. But what has actually changed?
Absolutely nothing. He is the same boy. We are the same parents. We love him.
Absolutely everything. He is doing his best, with the wiring and tools he has. Sometimes his behavior doesn’t fit the world around him very well.
I can now see that my son has been doing an incredible job at school socially, given that he’s had to construct an intellectual model of social interactions and expectations. He doesn’t receive all the subtly coded non-verbal information that the rest of us do.
I can see that my wife and I have been good parents, that we might do well to ignore much of mainstream media parenting advice that never would have worked for him (other than the love bit.)
It didn’t always seem to them like I was doing my best. The label helped a lot though. We could describe some of my antics or apathy as disorder—not intentional disaster.
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I can see that my son may have a life ahead of him on the razor’s edge of labels. There will be solidarity with an in-group, acceptance, and practical tools, while at the same time he is set apart from neuro-typical. (On this topic, I cannot recommend enough Andrew Solomon’s Far from the Tree.)
From now on, our son will be “a boy with autism” instead of just a boy. He will become aware that while he wants nothing more than to be “just another boy,” it will often serve him better to be a boy with a label.
As a manic depressive father, I am grateful that I have twenty-five years of experience walking this knife-edge of identities. As his life gets more complicated, I may be able to help my son navigate ambiguous terrain better than I otherwise would have. I hope so.
A while ago I was enjoying the podcast of a conversation between Alanis Morissette and another guest. Things got a little heated. They chose to agree to disagree about whether it was right to say that everybody was “doing their best.” They did this so that they could move the podcast along. Alanis was advocating the perspective that people were always doing their best, that some behaviors betrayed less-than-optimal natures or nurtures, or trauma, or all three.
I’ve lived with manic depression since I was in college. My family has had to support me through some rough patches. It didn’t always seem to them like I was doing my best. The label helped a lot though. We could describe some of my antics or apathy as disorder—not intentional disaster.
I’ve only ever yelled at my sister once as an adult, when she said, “I know you want to not have to be responsible for that time ….” I jumped down her throat and screamed that I wanted nothing in the world more than to have been able to be responsible for that time.
We agreed to disagree.
For a thrilling way to bracket one end of the “doing their best debate”, check out neuroscientist Sam Harris’s position that free will itself is illusory. From that starting point, you can’t even ask the question whether someone is doing their best.
At the other end of the spectrum is the Western capitalist ethos, which tries to suggest you always get what you deserve. We admire so many of its tenets that we sometimes forget they don’t apply to all walks of life.
Where do you stand on the “Everybody is doing their best” spectrum?
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Photo: GettyImages
I’m type 2 bipolar with major depressive disorder, my 4 year old son is autistic. I’ve scoured the internet literally for this combination of parent child. I’ve been ill since childhood and my son is unfortunately a lot of the time but not always a walking trigger for my disorder. I rapidly cycle daily and I’m trying and hoping I can find someone in a support group like me “us” (my son and I) it’s been really hard for me to the point of collapsing on my part, my son comforts me and that shouldn’t happen. This article gave me… Read more »
Hello Crystal, thank you for your thank you! You’re so welcome. I’m sorry it’s taken me some time to get back to you. Hugs. Lots of hugs. You are strong and you are brave and you are not alone. I’ve been learning that “All you need is love” might leave out the bit about patience, and learning slowly but surely which things keep us the safest and most able to weather the uncertainties. More hugs.
Hey, nice article. I have a saying for my own use to remind myself to be gentle with other people. I say “The beginning of compassion is to understand that everyone does the best they can with what they have.” This may or may not be strictly true, but it reminds me to look further. For example, if I think someone is lazy and evidence supports this, I would consider: perhaps the person has a physical limitation or hidden disability that she doesn’t share with others. Or perhaps they have a different set of priorities and they are successful in… Read more »
Wow. Thanks for your hugs, I’ll take them first :). I’m pleased you comment that I used both person first and label first in the article. I’m sensitive to the fact that it’s charged terrain; your thoughts certainly don’t come across as lecture, not at all. I prefer manic depressive to bipolar for myself. If we’re talking about my challenges with mental illness, trying to help others understand what it means to me, those two words paint an actual picture…And perhaps in my mind, I look forward to a future where “person first” as the primary concept (i.e., HUMAN struggling… Read more »