I want to share a photo of my father. In the photo, he is about eight or nine years old, and he’s kneeling behind his younger twin siblings. Except for a photo taken of him as an infant, it’s the only childhood photo I’ve ever seen of my father.
I’ve been haunted by this picture for many years. Once I started realizing that my father had Asperger’s, I finally realized why. My father is doing something with his eyes in this photograph that makes me hurt inside:
He’s looking at the camera, and not looking at the camera, at the same time. He looks like he’s in pain and trying not to show it. His siblings are looking directly at the camera, while my father looks almost as though he’s between worlds.
He almost always looked that way, like someone trying desperately hard to plow ahead while the world pressed in on him with a bewildering amount of intensity. I don’t know that it’s possible to forgive the things he did when he was alive, but I understand him now. He’s no longer my frightening and tyrannical father. He was someone in constant pain. He felt completely alone and vulnerable, all the time, every day, for his entire life, and he had no words for it, and he had no one to talk with about it, and he had no community, and he had no support. He was the man of the house—that was the beginning and the end of everything—and he looked straight ahead into the world and tried not to flinch.
It didn’t work. His pain came out in soul-crushing ways.
I complain a lot about the ways that the medical profession pathologizes us, but we have a big advantage over my father. We have one another. And the children coming up will at least have the words to describe who they are and what they feel, even if those words miss the mark. It’s a beginning. It’s something to work with.
It’s more than my father had.
© 2010 by Rachel Cohen-Rottenberg
I wouldn’t say that I interpret his expression any differently, because my interpretation is useless, what counts is your interpretation, and your understanding of his struggles. Understanding is most of the way toward forgiveness. Yeah, it must have been rough for him, and you and I both can identify with that, coming to our diagnoses so late in life. Still, better late than never!
Way better late than never!
When non-autistic adults say that they can’t understand what a diagnosis later in life could possibly do for us, I say, “It helps us to understand ourselves, which means that we can stop beating the hell out of ourselves, which means that we can find ways to avoid being in excruciating emotional and psychological pain for the rest of our lives.”
I’ll take my worst day post-diagnosis over my worst day pre-diagnosis, anytime.
“I’ll take my worst day post-diagnosis over my worst day pre-diagnosis, anytime.”
absolutely.
sometimes i feel like a a big baby, when i try to describe the pain of living in someone else’s world. even loving friends and family seem to have little patience, when i try to explain. what i wish they could understand is how being able to describe my experience in a more accurate, relevant and non-judgemental framework heals more of my past hurt than i could have imagined.
it may sound like i’m looking for sympathy, or an excuse, but nothing could be further from the truth. for once, i feel like i might be able to stand my ground against the intentional and unintentional eroding of my self worth, self esteem and confidence. it may not sound like a declaration or a trumpet, but it sure feels like one.
and as always, thank you for your unflinching honesty and willingness to share. you may never know how much it helps us, who always felt as alone as you
I know what you mean about not looking for sympathy or an excuse. It’s quite the opposite, I think: I’m looking to take responsibility for who I am and to take pride in myself as a human being on an equal footing with others.
I haven’t had that many days post-diagnosis yet, but so far, um, yeah.
“It helps us to understand ourselves, which means that we can stop beating the hell out of ourselves, which means that we can find ways to avoid being in excruciating emotional and psychological pain for the rest of our lives.”
That is absolutely how I’ve experienced it. The diagnosis of Asperger’s didn’t give me anything, but but it helped me tie together things about myself that I’d noticed over the years, and helped me form a more complete picture. I’m not worried about there being something wrong with me anymore–I know who I am, and I know better how to bridge the gap between me and other people.
Mostly, I just feel more at peace.
“bewilderng amount of intensity”. You’ve described my own father to a T! I wonder how many cases cases of autism have been misdiagnosed in all our family histories?
Quite a lot, I think. I’m pretty certain that one of my father’s aunts was autistic. (More about her in a later post.) Shake the family tree, and I’m sure quite a few others would fall out.
though i’m wary of finding autism everywhere because i’m looking, it’s popped up in a niece and my mother, who is somewhere along the spectrum, though we haven’t discussed it yet. she’s certainly picked up on our similarities, and after finding out about my diagnosis, has realized that so many of the things that make me wonderfully different, are just like her.
I hope your recognition of your father’s pain was a healing experience for you.
It definitely has been, more and more. It always helps to be able to come to a greater understanding of things.
I can remember in college, just before the wheels came off and I made my first real suicide attempt, I was telling someone, that I had always felt like I was living on a different planet that was orbiting this one, and sometimes the two worlds would overlap, but mostly I didn’t understand ‘them’ and ‘they’ didn’t understand me.
The person I was telling didn’t get it. I’m not really even sure I got it at the time. I just knew how it felt, and that I wished it would stop. It would be another decade before I would start to “get it”. But I’m glad understanding has finally come.
((((Hugs))))) It never ceases to amaze me how much we’ve all gone through, and how discovering that we are autists has made such a profound difference.
Rachel, we have this community and “the words” and they are so life-changing and healing. I discovered these blessings four months ago in my mid-sixties. (Your blog was one of the primary sources).
I wonder what “the words” could have done to make my parents’ childhoods easier.
And mine too.
And my work life.
And my marriage and family.
At least in retrospect it now all makes sense.
And I can feel the healing occurring.
Thanks for writing.
I hear you, Born2bme, loud and clear. I’m so glad that you found this community and so many answers. It’s really quite something to have discovered other members of our tribe, isn’t it?
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I would describe finding out why I was different as a grand epiphany, and people are perplexed at the emotion it unleashes when I describe the difference in before and after. It is most marked for me because I had convinced myself that I did not want to know (what was wrong), and only faced my fear (and began looking for information) to help my youngest child. If anyone had told me then that I would be relieved when I saw my condition explained, I would not have believed them. I still think that someone not on the spectrum would find it difficult to understand that in any critical conversation of “we” versus “them,” a spectrumite will identify as “one of them,” not “one of us.” How precarious that feels! Surely, for our parents on the spectrum, being one of them instead of one of us at a time when the Nuremburg trials were taking place must have felt absolutely terrifying.
Liz, I think it’s absolutely the case that our autistic relatives from earlier generations must have been terrified—especially the men, for whom there was no support for feeling anything other than “in control.” Given the fact that everyone in my family is Jewish, and that the words “Jewish” and “outsider” have been synonymous from time immemorial, the feeling of being “one of them” would have been greatly exacerbated for the spectrum dwellers.