Stuff to be thankful for, re: Asperger’s Syndrome Or another title: Endless self-analysis

‘Tis the season to be thankful. I know Thanksgiving was last week, but better late than never. I’ve decided to do an entry about Asperger’s Syndrome and what I have to thank it for.

For the uninitiated, Asperger’s is a form of autism. I was finally diagnosed with it formally at the age of 22.

These days, there’s all sorts of education about autism and how to identify it in young children, and early intervention programs to deal with the condition starting in the preschool years. I don’t know if such programs existed in the eighties when I was born, but there certainly weren’t any in rural Ohio where I lived. I had inattentive parents and my school was underfunded, which I’m sure didn’t help matters. So there were probably signs of my condition from early on — they now believe autism is something you’re born with — but those signs were missed. However, as I got older I was having more and more problems.

It started, I think, with meltdowns I would have three or four times a year, which were severe enough that a parent would be required to go to school to collect me. Things went downhill starting in around third grade I think, and by sixth grade I was falling apart. The people at school realized there was something wrong. I know they talked to my parents about my behaviors. Not being privy to these conversations, I don’t know if autism was mentioned, but it might have been. I thought I was depressed — which indeed I was, but that wasn’t my only problem. I’m sure that part of the cause of the depression was the social problems and stresses that were the result of my autism.

Anyway, I wound up having to leave school at the age of thirteen. By then I was failing all my classes and coming home in tears every second day. It’s a very long story, but suffice it to say that school and I were just never meant to be together. We arranged what I thought at first might just be a trial separation, but we found out we were better off apart and thus got a divorce. I never went back.

Nowadays, if you spend very much time with me at all, you notice that a lot of things are kind of “off.” I almost never look a person in the eye, for example (with a very few exceptions, such as Michael and my parents). I am extremely clumsy. I have repetitive movements, such as rocking back and forth and slapping my hands against nearby surfaces or my own thighs. (This is most often evident when I’m upset about something. Once, when I was very upset and had no other way to calm myself, I pounded my fists into my thighs so hard, and so many times, that both my hands turned black from bruising.) I have sensory issues. There are certain noises that will quite literally bring me to my knees instantly, for example.

For years, beginning in my adolescence, various people in a position to know what they were on about suspected I had Asperger’s, but I strongly resisted the diagnosis. Looking back, I’m not sure why it was so important to me that I should not have it, but it was, and I would get angry whenever someone brought it up and start ranting about how not every smart socially inept person had Asperger’s and what did it matter anyway?

But somewhere along the line, I capitulated, and have been a happier person for it. Now I understand why I think and behave the way I do, and I can explain it to other people, so (maybe) they won’t think I’m just being a snob or rude or a jackass or whatever. I can also get my condition treated — although there’s not much in the way of treatment available for adults.

My treatment consists generally of my reading websites and books about Asperger’s and how to deal with it, and regular sessions with my therapist, who is called Gloria. I started seeing Gloria last June after I got diagnosed with bipolar. I was assigned to her, and I’m not sure whether this was intentional or not, but Gloria’s specialty is kids with autism. I am not a kid, but I have autism, and she is very helpful. For much of my life, my primary problem was depression, but now I finally got my medicine adjusted right and my depression is under control. Now I can afford to work on the Asperger’s. Mostly Gloria teaches me social skills.

Many people call it merely a difference or even a gift rather than a disability, but to me, Asperger’s Syndrome is a pain in the neck. There are a lot of things I wanted to accomplish by now which I haven’t accomplished, and which I’ve come to realize I will probably NEVER accomplish, because of the Asperger’s. Most days, I wish I did not have it, though of course I can’t imagine a life without it. I’m sure Michael and my friends and his friends wish I did not have it.

But getting back to the “thankful” theme I started out with.

Whatever its faults, there are some major things Asperger’s has given me. If I snapped my fingers and made the Asperger’s disappear, I’m afraid certain abilities I have would disappear right along with it and that would be a real shame.

1. I would not know Michael if I did not have Asperger’s. In large part because of Asperger’s, I had to leave school at thirteen. I started taking classes at the nearby college (Ohio State University, Lima branch) to get on with my education and I met Michael there. He was getting his third and final degree at OSU, and it was his very last quarter at the school. We were in a Shakespeare class together. We got into an argument before class, he decided I was a smart person worth getting to know, and I decided he was a jerk. And the rest is history.

Michael adores me and his family loves me too, and I don’t know what I would do without them. Michael has been the biggest influence on my life pretty much since the day we met, and he has taught me so many things (he was the first person to bother trying to teach me social skills, and continues to teach me even now) and changed me in so many wonderful ways. And if I had followed the normal trajectory of a student, graduated high school at 17 and started college then, I would have missed him entirely.

2. I would probably not have known Robert Cormier if I didn’t have Asperger’s. Robert Cormier was an author of wonderful books of young adult literature and also the kindest, gentlest person I have ever known, and had a profound impact on my life beginning when I first started reading his books at age twelve. He died when I was fifteen. I cried for months. In 2006 I flew to Minneapolis, Minnesota to attend an hour-long speech by his biographer and close friend, Patty Campbell. Afterwards I introduced myself to her and explained about my relationship with Cormier and she recognized me: it turned out he’d told her about me. We are now very good friends and email each a lot. Then in 2007 I went to Leominster, MA, Cormier’s hometown, to do research about him, and met his daughter, who worked in the local library. It was not a planned meeting; it was almost an accident in fact. And she also recognized me immediately: “Oh, Meaghan! He told us all about you!”

We got to know each other like this: Robert Cormier put his own personal home phone number in I am the Cheese, a novel he published in 1977. It was first book of his I read and in my opinion, the best. Anyway, he put the number in (disguised as the phone number of the protagonist’s girlfriend) so people could call him and tell him what they thought of the book. And people did call. And kept calling for the next 23 years, until his death. I was one of those people who called. And I found I liked him so much that I called again. And again. And again. And he liked me too. We became friends, after a fashion, and he was a mentor and great support to me during this very troubled time in my life. For awhile there he was pretty much the only responsible adult I knew. This went on for over two years, until his death. We never actually met in person.

What does Asperger’s have to do with this? I’ll tell you: I created this relationship with Cormier because I didn’t know any better. A person who wasn’t totally lacking in social skills (as I was; it’s one of the primary symptoms of Asperger’s) would have realized he put the number in so people could call him ONCE, not keep calling and keep calling and telling him stories about being bullied in school, or their pet hamster, or whatever. If another author I liked were to publish their phone number like that today, I would never call that person more than once. But I didn’t know those things back in 1998, when I started calling Robert Cormier, and I wouldn’t know them for a long time. As far as I know I’m the only teenager who struck up a relationship with him in this manner and for that long, and I was quite enough for him to handle. I know he worried a great deal about me. If I were in his place I would have probably either written my parents about the stuff I’d been telling him, or told me to beep off.

3. I’m pretty sure I would not be running the Charley Project if I didn’t have Asperger’s. To spend so many hours researching and writing on this small topic of missing persons, constantly seeking out more information, making it one of the greatest forces in my life, all without remuneration or fame or anything — it’s kind of not normal. And on top of that, MPs are depressing for most people. But I thrive on it. People who think I’m some kind of saint for doing this don’t understand that, if my field of interest were Old Church Slavonic or skeet shooting or Miklos Vig or some other similarly esoteric topic that resulted in no public service at all, I would approach that topic with equal dedication — nay, obsession. It’s not about public service at all, it’s about feeding my obsession. Public service is just icing on the cake.

I’m quite sure that, were it not for the intense focus and rigidity that are characteristic of Asperger’s, I would never have been able to make the Charley Project grow as big as it has, or keep it running by my lonesome for as long as I have. You must also consider that, if I didn’t have Asperger’s, I would probably have more friends and some semblance of a social life, which would of course use up time I might otherwise spend writing about missing people. But most people bore or irritate me and I bore and irritate them, so I prefer my own company.

4. This may be in part because of my high intelligence, but I think Asperger’s definitely has a hand in my prodigious memory about certain subjects. My encyclopedic knowledge of missing persons, for example; I rarely need to look things up on Charley because once I write it down, I remember it. Or I remember it even if I didn’t write it down but merely read it somewhere. In fact I remember just about everything I read. This is very helpful for working on Charley and also for studying other topics like history and English. If only this awesome memory would translate into more useful things, like remembering where I put stuff, and remembering that I have already told some story or other to this person five times before…

5. I believe that having Asperger’s, and having the resulting social problems like getting bullied in school and such, has given me more than the usual amount of compassion and keener-than-average sense of fairness and justice. If I find out I’ve hurt or upset someone, even by accident, it makes me very sad and remorseful. I am almost always willing to give a person a second chance. If someone hurts me, I don’t usually lash at out them; instead, I try to find out what their motive was and sometimes even blame myself (okay, that’s not a good thing).

I believe everyone has a duty to try to make the world a better place. I care deeply about the sufferings of other people, even if I don’t know them. When I hear about other people being victimized (like in the crime articles I read), it makes me angry, sometimes very angry, but I’m extremely logical even in my anger. That is, I theorize about ways to keep the offense from happening again, rather than dwell on ways to make the offender suffer. I believe violence begets violence. I had sometimes wondered if those beliefs would change if I myself became the victim of a violent crime. You never know unless it happens — and when it did happen, my beliefs didn’t change. And I’m proud of myself for that.

So. Five things to be thankful for, five things this neurological deviance has given me. Five things I can’t imagine my life without.

Enough self-absorption for tonight.

Yay, I might have helped someone

Since last summer I’ve been following the blog of Rob Gorski, who has an ailing wife and three autistic sons. Their life is hard, to say the least, basically bouncing from one crisis to the next, but they keep on keeping on. Anyway, one of Rob’s wife Lizze’s many health problems is a migraine that has persisted, more or less, for a year. Of course she’s miserable. The family lives close to Cleveland — or closer than I do, anyway — and had a consult about the headache there yesterday. I was not surprised to learn that Lizze had been recommended for the IMATCH program.

I posted saying it was a wonderful thing and Lizze would probably benefit greatly by it, though of course it will be hard with Rob having to handle the kids by himself during the three weeks she’ll be gone. Lizzie is apprehensive about the program so I sent them a message describing my own experience and some of the stuff she’ll likely have to go through, etc, while emphasizing that I cannot praise them enough. IMATCH made me into Meaghan again. In fact, Michael says I’m actually better now than I was BEFORE the headache started; in other words, the program had some therapeutic effect besides dealing with the pain.

Anyway, I hope my message is helpful to Lizze. I really admire her and Rob; I could never do what they do.