Thursday, March 29, 2012

[uncensored]: Love in the Time of Autism

As salaam alaikum,

This was the runner-up for the loveinshallah.com post I contributed this week. As such, it has not been edited as well as that piece, but I still find it worth sharing:


I was sitting in an observation room in the developmental medicine center in the children’s hospital, watching a psychologist administer the ADOS to a young child who would most certainly be diagnosed with an autism spectrum disorder when I came to the conclusion that my ex-boyfriend had Asperger’s syndrome.

That would explain a lot. That would explain why sometimes, when we went out, he preferred not to talk to me and we ate in silence. It would explain why he told me he felt like he wasn’t from this world, like he was an alien that no one could relate to, and he couldn’t relate to them. He couldn’t relate to me, either. Maybe it’s why he saw older pictures of me and didn’t recognize me because my hair was different. This is why he laughed when everyone else laughed but didn’t understand what was funny. Why he thought it was appropriate to break up with me and tell me that it was because of my weight, and everything else that went wrong in the dissolution of even our hopes of being friends after he eventually apologized for the weight comment. Why he was able to disconnect so cleanly from me, in spite of all that we had shared, just like unplugging himself from a socket.

That would explain a lot, but I can’t count on that. I have to stop coming up with excuses for him. He was mean to me and for whatever reason he didn’t want to be with me, he isn't. I am better than him, end of story.

But maybe he is on the spectrum…

Before learning the DSM-IV criteria for autism spectrum disorders in medical school, like my mother, I suspected different people in my life of being on the spectrum. There was the friend in high school who was very socially awkward and whose conversations seemed to be based in scripting, taking phrases and dialogue from movies and shows to supplement language.

Then, of course, there is the broader autism phenotype theory within my own immediate family. My grandfather is suspect, with his decades-long love of reading the dictionary and highlighting everything with his red, ballpoint pen, one of the many fixtures at his table of things that is arranged just so. I’ve briefly wondered about myself and my odd fixations on things, like, most recently, the history of the T, the subway, in Boston, and my fascination with discontinued lines and hidden tracks…

I don’t think I’m on the spectrum, but I wonder what loving someone on the spectrum, my brother, has done to the way I love men.

I loved that my ex was quirky. I loved that when he thought, he thought in moving objects. Like thinking about sports then imagining a spinning football and how that would translate into a mechanics problem for his students. It was okay that he went days without speaking to me, that he sometimes wanted to be left to brood while with me, that he sometimes seemed distant. When he was present, he more than made up for it with surprise moments of intuitiveness and concrete ways of sorting through my torturous stream-of-consciousness conversations with him. But that did not a relationship make. I didn’t realize this until I started getting over his breaking up with me, though.

I went to a conference for parents with children with special needs, and attended a session on supporting the siblings of these children. They mentioned something that gave me pause. That sometimes, siblings of children with special needs have problems establishing healthy romantic relationships because they don’t understand that someone who loves you shouldn’t hurt you. Was that me?

I mean, siblings of children with special needs were more likely to go into service fields. I’m in medicine. That’s me.

But Emeka never treated me badly. When we were growing up, yes, sometimes he seemed to completely ignore me, to be content with my not existing. He was non-verbal in the beginning, so he didn’t talk to me for years. My mother tells of the time that I reported to her, frustrated, that “Emeka won’t play with me.” And he didn’t. My mother described it as him having “his own agenda.” Professionals in the field refer to it as self-directedness.

There’s something about the way the brains of people on the spectrum work that they process human faces as they process objects. Parents and siblings are often used as objects to obtain other objects. Little eye contact is made and the individual seems very independent simply because they are living in a world all their own, with no other people, more excited by objects than human contact. So Emeka preferred to line things up and to scan the order of things than to look me in the face and engage in play.

But I always loved my brother for who he was. He embarrassed me with his tantrums in grocery stores, but that was his greatest offense. I protected him at school but I still smacked him upside the head with pillows and paper plates at home when he got on my nerves, just as I imagine I would as a big sister to a neurotypical brother. I loved him though, for years, I got nothing back.

Was this why I let my ex be so distant while we were together? Is this why I wanted him back so much and felt like he was the best thing that ever happened to me, and ever would? Because he was verbal and had moments of relatedness?

My mother disagrees with this analysis. From her vantage point, she says that my relationship with my brother has given me high expectations for my relationships with men. She says that my relationship with Emeka has made me empathetic, patient, generous and kind. I am very careful with my relationships because relating to a brother with autism over the years has required special care. So I expect the men I am in relationships with to take the amount of care with relationships that I do, and they don’t.

And I don’t understand why!

Yeah, I kind of like that explanation of things. It’s more empowering. I struggled with the way my relationship with my ex ended because it was so abrupt and messy. “I’m no longer satisfied with this relationship,” while he was really the one not satisfying me because I saw him so seldom though he lived less than a mile away. And somehow, he dumped me. Meanwhile, I was ready to say, if you don’t want to see me once a week, we can see each other once every other week. No longer satisfying? And he was shocked when I broke out crying. He had been thinking about that for two weeks, came forward, and was shocked that I was upset for months afterwards. What is wrong with you? And you told me I was fat? How could you be so cruel? You apologized and then gave the same lame-o excuse, “I’m not ready for a relationship,” and then almost immediately you’re in another one with a young, skinny chick. And you want to be friends? How is that okay?

His gross mishandling of our relationship, which was always more bumbling than malicious…makes me wonder if he is, indeed, on the spectrum. Maybe I want to believe that because in addition to all the things that my relating to my brother has made me, it’s also made me forgiving.

I forgave my brother for embarrassing me and ignoring me all those years. I forgave him for cramping my style at school. He made up for it as a teenager, when his language began blossoming. One day in particular, I remember playing a VHS tape of a show we used to watch as kids. In a way that would later become characteristic, he told me that he remembered that we used to watch the show together. He told me, “It’s from the years! It’s from the years we did.”

My baby brother remembered something we did together. Even though he was running around, spinning, not making eye contact, not sitting for the duration of the show, he remembers that it as something we shared. And I cried the first time he told me this. I cried in spite of myself, because I thought I was stoic to the fact that my brother just couldn’t share with me, but I wasn’t. It still meant a great deal to me to know that he was there all along.

My little brother who I once called “Fuzzy Joystick Head,” in spite, by God’s grace, developed language and social skills that were sufficient for us to share in experiences. And I rejoiced in that, and I don’t even remember what it felt like to be embarrassed by him these days…how can I when…he’s come so far, and teaches me so much every day as I watch him continue to develop and make milestones we didn’t think he ever would…

I forgive my brother, and in wanting my ex to be on the spectrum, I guess I want to forgive him, too. But unlike my brother, my ex has done nothing to deserve a pardon.

It hurt, because I loved him, but I should move on. Before I met him, I had decided to give up on relationships and dedicate my life to becoming the physician that I want to so I’ll be able to support my brother when my parents are no longer able. I think I’ll just go back to that.

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