Friday, August 24, 2007

Environmental Triggers

Sally’s parents have gone out for the evening. She walks into their bedroom and opens the drawer of the nightstand. As she has done many times before, she holds the loaded gun to her head while looking in the mirror. Someday she will do it. But not now, not like this.

Anne is drunk again. She is always drunk. She has climbed onto the roof of the neighbor’s house and is looking for an unlocked window. She is angry that they said she could not come in, and is determined to prove them wrong. Soon, the police will arrive. The ladder has fallen, and Anne must jump from the roof.

Sally has clinical depression. Anne is an alcoholic. There is something in the brains of these women that makes them these ways. They will get help eventually. Sally will get treatment for her depression after 20 years of struggling with suicidal thoughts and persistent sadness. Anne will join AA after many years of uncontrollable drinking. A happy ending? Perhaps, if they keep up the treatments and the treatments continue to work.

There is more to the story. Anne and Sally are autistic. Anne’s mother has said to her many times, “Why can’t you be like the others?” and “Do you want people to think there is something wrong with you?” Sally’s father has complained, “I am ashamed to take you anywhere”.

The parents know each other. They get together and talk about how hard it is to deal with a child who barely talks, who acts younger than she “should” at her age, who is only interested in reading and doesn’t make friends with other young people. It is so hard, they say. Sally and Anne don't talk much, but they hear acutely. They hear this.

It is almost certain that Sally is prone to depression for biological and hereditary reasons. There are others in her family with the condition. Anne, likewise, is a member of a family in which there are several alcoholics. Probably, these struggles would have occurred, even if Sally and Anne had been fully accepted by their parents as unique individuals with every right to their differences.

Possibly, though, the challenges they faced would have been less severe. Possibly, the disdain of these parents served as the environmental trigger which caused the depression and the alcoholism to manifest in the ways that they did. Sally and Anne might have gotten help earlier had they understood that they were not defective or fundamentally flawed. It took them a long time to find out.

This is a semi-true story. Only the names have been changed and the fact that Sally and Anne are one person. She considers herself very lucky indeed to be alive today and writing this blog.

26 comments:

  1. Very courageous of you to write this, Bev. And it is a powerful statement you are making.

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  2. I love a good nature/nurture debate.

    I'm glad you're a good sharer too.

    Best wishes

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  3. Yes, thank you for writing this. It is brave and heartbreaking, but also hopeful. I've been thinking a bit lately about "acceptance" and whether or not I truly accept my son for who he is or if I am the one most often holding him up to the yardstick of "normal." Am I trying to change him--even in subtle ways--because I think it will ease his journey? Or because it will ease mine?

    Very thought-provoking, as you can tell. Thank you Bev.

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  4. Steve is right. I'll remember this post.

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  5. This is the most powerful post I have read in a long time.

    Thank you.

    Joe

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  6. Brr... that first paragraph gave me the chills...

    I hope that some parents who might not have realized the consequences of their attitudes will read this post and think again.

    And I agree with Steve that it was a courageous post to write.

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  7. Anne’s mother has said to her many times, “Why can’t you be like the others?” and “Do you want people to think there is something wrong with you?” Sally’s father has complained, “I am ashamed to take you anywhere”.

    If the worst does happen, what these parents will say is that the "ravages of autism" are to blame, no doubt.

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  8. Actually, Joseph, these parents did not know their daughter was autistic. They thought she was difficult, weird, stubborn, abnormal, a lot of things, but in those days, kids like me were not called "autistic".

    And these things they said, they were not the whole story. They said positive, loving things too. They were sometimes proud too. I am pretty sure they would deny having said these things or even having thought them.But criticism at this level is hard not to internalize. It is especially because these parents would never think of themselves as critical or abusive in any way that I felt it important to say this, that yes, they do hear you, they will remember, it does matter.

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  9. This is an important message for ALL parents of ALL kinds of kids. I always find the best parenting and educational advice when I am learning more about autism.

    Like Kristen, I also question whether I truly accept Pete as he is. I know I try, but I wonder what subtle messages he's getting from me. I hope I have learned already from some of the mistakes my own parents (who, like yours, love me very much and did their best).

    karen in ca
    P.S. Thank you for sharing such personal information. You are very brave.

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  10. Oh, my. I am happy that Sally and Anne didn't end their life. Thank you for writing this from me, too.

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  11. Wow, Bev. That is so intense. Thanks for sharing, and I am also grateful you are here.

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  12. My heart goes out to the people who grew up with autism, Asperger's or ADHD before those were correctly diagnosed. I hope the generation of autistic people we are raising now will be better understood by their parents.

    I have an older cousin with Asperger's - diagnosed by me ; ) - and my Mom used to tell me sometimes she was afraid that I would turn out to be like that cousin; so many times she urged me to go outside and play with friends, instead of staying home by myself reading. So I can only imagine the hard time she'd have given me if I was indeed an Aspie.

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  13. Gee, there are unheralded advantages to growing up among Russian Jews. _Everybody_ in the family, no matter how old, gets told they're idiots, unpresentable, an embarrassment, a scandal, a terrible burden, a worry to eat your heart, incapable of living without their constant support (which you fail completely to appreciate). Which means you can ignore all of it, evne when they believe it. (Unless someone says "Dummy!" in a tragic tone, in which case you probably really were a dummy.) Come to think of it, I had the following exchange with my father lately (he'd called to see that we were all right, had heard about flash floods near us):

    Me: (something teasing)
    Him: "I wonder sometimes why I didn't drown you when I had the chance."
    Me: "No sack big enough."
    Him: "There was a time...."

    With them you want to worry if everything is very very gentle and polite.

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  14. From a selfish perspective - SO glad Sally/Anne is alive and well. I really admire her and love her writing/art. Thank you for sharing something so personal. - Missy

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  15. Thanks for the clarification. I was thinking of a different case where blame was expressed in that manner.

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  16. I read this this morning. It is 11pm now, and I still don't have the right words for what I want to say.
    I can relate to so much of that.
    I'm glad you wrote it.
    I'm glad you are alive to write it.

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  17. My almost-11yo daughter with Asperger's has "genetic loading" very similar to Sally/Anne's. Since most of that comes from ME, I'm very alert to messages and the kinds of supports that help. But I'm taking your story to heart. Thank you so much for sharing it.

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  18. Great post, very thought-provoking. Take care.

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  19. I just got back from a weeks' vacation, part of which I spent trying to explain to a friend how important it was to me to be positive about my autistic child, and to cherish her and celebrate her strengths. I appreciate your post and am awfully glad you are still around.

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  20. wow.
    :(

    I am glad you can explain stuff, it helps me more than you could know.

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  21. Here's the thing about this.

    I'm nicely diagnosable, but I'm very, very leery of pointing to specific diagnoses or events and saying, "This explains my ___________."

    To take something I was sensitive about for a long time: I'm deeply klutzy. Walls wander into my path. I trip over perfectly flat sidewalks. Falling up steps with arms full of books? My specialty. I'm always the last out of a room because I have all the alacrity of TH White's ants when it comes to managing more than one object at a time. With objects coming towards me, the whole experience is Heisinger: I can gauge speed or distance, but not both at the same time. (Velocity, well, that's some advanced gauging.) I hear I'm a terrible and unsteerable dancer.

    My father used to call me "Grace". I worked in government circles where some degree of smooth was important, and worked very hard at being passable. An astute friend pointed out a few years ago that my main problem is my inability to get out of my own way, figuratively and literally. I also spent a good long time being depressed and suicidal. And yet my awkwardness and the reactions it's drawn have never been part of the depression.

    Why? Who knows? Maybe because...jeez, I don't know. It just never felt like a deep personal failing. It's just a Thing About Me.

    In another diagnosable, or daignosed, person, though, it could feel devastating. Why? Again, I don't think it's possible to say cleanly. Or maybe at all.

    Perhaps the best rule of thumb across the board, when dealing with your children, is "Be kind, stay loose, try to notice who they are, and consider that there may be reasons for what they're doing."

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  22. Tim Page's NYer story points out exactly what I think is problematic here. The overflap title is "Why I Was Strange", which is not too far off the gist of your post, Bev. But there is absolutely no substance to the "why" part of it. A strange person goes to someone licensed to diagnose, and is strange in ways that make the diagnostician say "Asperger's". "Aha", says the newly-diagnosed, "this is why I am strange!" No, it is not. "Asperger's" is only another name for a broad category of familiar strangeness. It describes no causes. None. There is no explanation for why you are strange. Nor is there any real intimation that your particular strangeness has the same cause(s) as that of others diagnosed with Asperger's. We know even less about the likely consequences of having this set of qualities, except anecdotally.

    It's a label. A crude label, a shorthand for pigeonholing, with zero explanatory power. You can do some handwaving about testosterone and mirror neurons if you like, but it's early days yet for both of those ideas, and there's no way to tell whether you, specific person, are hyper-testosterony (I'd have some questions about that) or have something funky with your particular mirror neurons.

    So is the diagnosis good for anything? I can think of exactly two things it's good for. One, it forces/allows accommodations where required by law. Two, it lets people who are similarly strange find each other. We can all carry around a little flag and say, "Oh, you too." Are we still likely to misunderstand each other? Absolutely.

    But no, I reject both the sentence "Aspergers is why I was strange" and "Aspergers is why I was depressed." We don't know, with any clarity, what "Asperger's" is, beyond a stack of qualities we already knew about.

    I'd return to the idea that you can forget about all of this stuff, wrt your kid, if you are kind, patient, and know your particular child, without waiting for insight from collective studies.

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  23. I didn't get a 'label' as autistic until after college. I didn't get the diagnosis/label (don't know what to call it) of chronic major depression till then either. But I heard the same things, did many of the same things (I don't drink though, just other self destructive behaviors). I am just now learning that there are others out there like me, or as close to that as is possible. I guess. Might I have said something then, no, it wasn't 'allowed'. So I 'fake functioned' and did it so well. But I think many people do. This isn't coming out well, so I'll stop. Writing is usually my easiest form of communication, guess not tonight.

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  24. Myself... I wasn't diagnosed until I was 39 in 2000... after being diagnosed with Anxiety, Depression, Manic-Dpression, Schzophrenia, and ADHD... been on 17 different drugs from Ativan to Zyprexa, sometimes shifting drugs like driving a manual transmission, goign thru major depressions due to lonliness and little to none intimate contact, and so on... I've even had suicidal thinking... but have enough safeguards to prevent it... but man, there have been some days where you just wanna say F**k everything and everyone and end it.

    I wish you all the best, and hope your strength holds out.

    Cheers!

    Jim
    ncc2920@telusplanet.net

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