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1:47am November 3, 2014
I remember when I first read about Our Voice. It was in Donna Williams’s book Somebody Somewhere, I think. A passing mention that ANI had been founded and autistic people were beginning to come together through a newsletter called Our Voice. I remember thinking of myself still as outside all this. I identified with most things Donna wrote about herself, but I still couldn’t connect it to this hazy concept of autism, especially in an environment where being PDDNOS was considered totally different from autism, and I didn’t know what PDDNOS was even supposed to mean. Autism, developmental, pervasive, these were just words, just sounds, with some exceptions. I saw myself as fundamentally outside this autistic community thing. I saw myself as having no right to be involved with it, no connection to it, nothing. And yet I identified with something in the life of every autistic person I met or read. Often a lot. It was a very confusing time. Before I knew it I was an ANI member. Before I knew it I was ordering back issues of Our Voice. Our Voice. The name. When I read it in Donna’s book, it felt like claiming ownership over having a voice at all, something autistic people weren’t supposed to have. I imagined it as supercrip kind of. Overcoming autism to have a voice. To have our voice. I never thought I’d hold issues of Our Voice in my hand. I never thought I’d be an ANI member. I never thought I’d carry on long email conversations with Donna. I never thought I’d be thought of as any kind of leader in the autistic community. These were not things I aimed for. These were not things I expected. These were not things I believed I deserved. And now while moving I opened a box and there were four issues of Our Voice staring me in the face. And it brought it all back. All of it. I can’t believe the way people look to me sometimes. Some look to me as a leader, I never asked anyone to follow. Some look to me as a celebrity figure, which still seems ludicrous beyond belief. Sometimes I’m still the kid who thinks sie has no right to a community of people like hirself. Sometimes I’m still the kid who thinks the autistic community is an elaborate prank set up by my bullies to make me hope there are people in the world like me. Sometimes I’m still the kid who picked up a copy of Nobody Nowhere, saw myself reflected on paper for the first time in just the poem and short introduction, and became well and truly terrified but couldn’t put the book down for the life of me. Sometimes I’m still the kid who, whenever getting to know another autistic person, seized on every minute difference between us to prove they were autistic and I wasn’t. Even when my traits were more pronounced or stereotypical - if we were different in any way, they are valid and I was not. There are people who still want me to be that kid. I once wrote that I felt I had no right to say I had anything other than atypical autism. I always seized on the word atypical to soothe my insecurity about not being exactly like the autistic people I deemed more valid than myself. Even after the word atypical was removed from my diagnosis. Even when I learned it had only been put there for the tactical reasons that were common for kids diagnosed in the nineties, who actually met full autism criteria. Anyway someone found where I had written that eons ago and said they wished I was still respectful enough to only claim to have PDDNOS/atypical autism. As if, even if that were my real diagnosis, it would make me less autistic. As if… As if. The person who said this made me very angry. Even the DSM-V, which I hate with a passion, vindicated my conviction that autistic disorder, Asperger, and PDDNOS are all equally autism and equally valid. I even now, thanks to the DSM-V, have a diagnosis of autism with associated catatonic features - much more precise than autism with CNS disorder NOS. But a diagnosis is just words. I don’t even think autism is a thing. I think autistic people are a thing. But not autism. Autism is an idea that people have when they look at us. It’s not a reality. It’s not even one thing. It’s not even five things like in the DSM-IV. It’s people. That’s all. People that doctors have ideas about. I was once asked to write for Our Voice. I think it never actually panned out but that was just as surreal as holding it in my hand for the first time. My whole life is surreal. It’s nothing like I ever expected. In both good and bad ways. I wish I wasn’t a leader sometimes, because I was never given a choice. I just said what I thought and people started repeating what I said and I was the last person to find out how others saw me. As always. Then I became ~controversial~ when I didn’t fit stereotypes I never asked to fit, and some assholes decided to use my life as their plaything. But overall? Our Voice. I can finally believe I am part of the Our. I can finally see it for what it is, not a supercrip story at all, but a demand to be recognized as having the voices we have always had. And that offhand comment in Somebody Somewhere no longer strikes me as being about people unlike me. In fact some of the people involved are now my friends. Time is so weird. Time is what separates me from that kid. I don’t understand time. And I don’t understand my relationship to this thing called the autistic community. I don’t understand a lot of things people think I should understand, expect me to already understand. Sometimes the entire world makes me go WTF is even going on? TL;DR: Mel finds copies of Our Voice, is astounded at the changes in hir self perception, position within the autistic community, and understanding of autism since sie first read about the existence of Our Voice.

I remember when I first read about Our Voice. It was in Donna Williams’s book Somebody Somewhere, I think. A passing mention that ANI had been founded and autistic people were beginning to come together through a newsletter called Our Voice.

I remember thinking of myself still as outside all this. I identified with most things Donna wrote about herself, but I still couldn’t connect it to this hazy concept of autism, especially in an environment where being PDDNOS was considered totally different from autism, and I didn’t know what PDDNOS was even supposed to mean. Autism, developmental, pervasive, these were just words, just sounds, with some exceptions.

I saw myself as fundamentally outside this autistic community thing. I saw myself as having no right to be involved with it, no connection to it, nothing. And yet I identified with something in the life of every autistic person I met or read. Often a lot. It was a very confusing time.

Before I knew it I was an ANI member.

Before I knew it I was ordering back issues of Our Voice.

Our Voice. The name. When I read it in Donna’s book, it felt like claiming ownership over having a voice at all, something autistic people weren’t supposed to have. I imagined it as supercrip kind of. Overcoming autism to have a voice. To have our voice.

I never thought I’d hold issues of Our Voice in my hand.

I never thought I’d be an ANI member.

I never thought I’d carry on long email conversations with Donna.

I never thought I’d be thought of as any kind of leader in the autistic community.

These were not things I aimed for. These were not things I expected. These were not things I believed I deserved.

And now while moving I opened a box and there were four issues of Our Voice staring me in the face.

And it brought it all back.

All of it.

I can’t believe the way people look to me sometimes. Some look to me as a leader, I never asked anyone to follow. Some look to me as a celebrity figure, which still seems ludicrous beyond belief.

Sometimes I’m still the kid who thinks sie has no right to a community of people like hirself. Sometimes I’m still the kid who thinks the autistic community is an elaborate prank set up by my bullies to make me hope there are people in the world like me. Sometimes I’m still the kid who picked up a copy of Nobody Nowhere, saw myself reflected on paper for the first time in just the poem and short introduction, and became well and truly terrified but couldn’t put the book down for the life of me. Sometimes I’m still the kid who, whenever getting to know another autistic person, seized on every minute difference between us to prove they were autistic and I wasn’t. Even when my traits were more pronounced or stereotypical - if we were different in any way, they are valid and I was not.

There are people who still want me to be that kid.

I once wrote that I felt I had no right to say I had anything other than atypical autism. I always seized on the word atypical to soothe my insecurity about not being exactly like the autistic people I deemed more valid than myself. Even after the word atypical was removed from my diagnosis. Even when I learned it had only been put there for the tactical reasons that were common for kids diagnosed in the nineties, who actually met full autism criteria.

Anyway someone found where I had written that eons ago and said they wished I was still respectful enough to only claim to have PDDNOS/atypical autism. As if, even if that were my real diagnosis, it would make me less autistic. As if… As if. The person who said this made me very angry. Even the DSM-V, which I hate with a passion, vindicated my conviction that autistic disorder, Asperger, and PDDNOS are all equally autism and equally valid. I even now, thanks to the DSM-V, have a diagnosis of autism with associated catatonic features - much more precise than autism with CNS disorder NOS.

But a diagnosis is just words. I don’t even think autism is a thing. I think autistic people are a thing. But not autism. Autism is an idea that people have when they look at us. It’s not a reality. It’s not even one thing. It’s not even five things like in the DSM-IV. It’s people. That’s all. People that doctors have ideas about.

I was once asked to write for Our Voice. I think it never actually panned out but that was just as surreal as holding it in my hand for the first time.

My whole life is surreal. It’s nothing like I ever expected. In both good and bad ways. I wish I wasn’t a leader sometimes, because I was never given a choice. I just said what I thought and people started repeating what I said and I was the last person to find out how others saw me. As always. Then I became ~controversial~ when I didn’t fit stereotypes I never asked to fit, and some assholes decided to use my life as their plaything.

But overall?

Our Voice. I can finally believe I am part of the Our. I can finally see it for what it is, not a supercrip story at all, but a demand to be recognized as having the voices we have always had. And that offhand comment in Somebody Somewhere no longer strikes me as being about people unlike me. In fact some of the people involved are now my friends.

Time is so weird. Time is what separates me from that kid. I don’t understand time. And I don’t understand my relationship to this thing called the autistic community. I don’t understand a lot of things people think I should understand, expect me to already understand. Sometimes the entire world makes me go WTF is even going on?

TL;DR: Mel finds copies of Our Voice, is astounded at the changes in hir self perception, position within the autistic community, and understanding of autism since sie first read about the existence of Our Voice.

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