"Sometimes I'm still too scared to go to bed."

By Adam Bailey

The actual things only happen sometimes.
They really exist and really hurt.
If I don’t understand these things hurting me and why, I become afraid.
If I don’t understand, I can’t prepare for the things of the future.
 
The fear is not the actual thing, it is different and sometimes worse.
The fear of the things encompasses me, makes me think that the things are there all the time, everywhere.
The fear is what keeps me hyper vigilant and anxious.
The fear is FEAR.

 The fear of the things is what is irrational, not the actual things.

 The actual things only happen sometimes.
If I can feel more secure in my management of the actual things,
If I can keep these things to a minimum as best as I can, then I can try to be prepared.
Maybe I can be less afraid.

 
If I can be less afraid maybe I can feel more happy.

Autism is not a parenting problem. Autism is part of a person.

I had an extraordinary conversation with the mother of an autistic child on Saturday. She was one of the clique of parents who objected strenuously to the original version of this post. I don't want to use her name because I know it would really bother her, so I'm going to call her June. I have been in contact with another member of that clique, who has been very helpful, interested in dialogue, and patient with the anger I feel toward her friends. I don't want to use her name so I'm going to call her Rose. June had posted something nasty on the thAutcast Facebook page, and I had complained about it to Rose. Rose told June about my complaints, and June contacted me angrily.

I had previously written this post specifically for June, because she had told me that she could not possibly be bigoted against autistic people because her child is autistic. In it, I try to draw parallels between my experience as a gay man and my experience as an autistic person, citing the fact that even my domestic partner Max did not understand the importance of full rights for gay people until he heard the testimony in the Proposition 8 trial:

Max is older than I am. He has been openly gay for about as long as I have been alive. He has fought courageously and successfully for our rights. He was one of the first who got top security clearance when President Clinton reversed the ban on gay people having it in the 1990s. And he still carries bias against gay people

I disagreed when people went to court to try to get Proposition 8 overturned after it made same-sex marriage illegal in our state. I like elections, and I think ultimately minority groups win by making elections stronger, not by trying to undo them when we don't like the way they go. But what happened in the trial was that gay people laid out the difference that having full access to marriage made in their lives, in their status, in the eyes of their families.

Max is my domestic partner. It is not yet legal for him to be my husband. And he needed that trial to understand that separate but equal is not okay. He needed legal testimony to lose that piece of his bias against people like himself, after decades of fighting for our rights.

This is how June interpreted my post, when I sent it to her:

she thought that a gay man was writing about his own gay life in order to attack her.

She's done some advocacy for gay issues, so she thought I was writing about Max and I in order to hurt her feelings. She thought that I would only write about the person I love most in the world in order to poke at her.

That's how firmly convinced she is that she--  a neurotypical, straight advocate for autistic and gay people-- is the subject of every sentence a gay or autistic person says.

And the thing is, the reason I am writing about this, is this happens all the time.

June's friend Rose, who really has been great to me, has done exactly the same thing with my friend, who I'll call Louise. Louise has made some critical statements about things that Rose has written. Rose is unable to see that Louise has made these comments, not because she is mean, but because she really believes, as I do, that some of things Rose writes hurt autistic people. Rose cannot see that she is not the center of Louise's world, just as June cannot see that she is not the center of mine. Rose has accused Louise, publicly, of being willing to hurt children out of spite-- because she linked to something offensive Rose had written and said it was offensive.

Rose is a good person, but she has decided Louise is a bad person who only writes about the rights of autistic people in order to poke at her and other parents who have other points of view.

Other people do this, other good people. One of my friends assumed I participated in this documentary, in which I talk about my whole life, only to attack Autism Speaks. Another of my friends reacted with fury to this interview-- because it does not reflect his life, raising a very difficult autistic child.

People really do think of autism as mostly something that affects children and their parents.  This is the real epidemic-- parents who insist every discussion of autism be centered around themselves and their understanding of their children.

A group of parents really are insisting that we fight for our own rights only because we want to hurt them.

June cannot understand why I would write about my own experiences as a gay man-- I and those experiences are not real enough to her for her to see that they are more than an attack on her.

That's the real failure of theory of mind.

In the piece I wrote that June thought was attacking her, I included this:

My domestic partner Max is my favorite person. He's smart, funny, handsome, sweet. He's also been in great pain for much of the past week, with an infection that required him to spend one night in the emergency room and may require additional hospitalization. As we fight these things, I think how fortunate both Max and I are that we do not have AIDS, that we are still alive.

With Max in the emergency room-- she thought I would only write about him in order to hurt her.

That's how accustomed the autism parent community has gotten to seeing hostility where it does not exist.

I spent the day in the emergency room with Max again, yesterday, and came home to a message from Rose. She was upset that I had blocked her on Facebook, then told me again how she thought everyone was acting equally badly.

And that was why I had blocked her.

I cannot spend the day with Max in the emergency room and then be told that I am the equal of someone who assumes that I would write about Max being in the emergency room-- not because I love him and I'm scared-- but to hurt her.

I did not write this initially to hurt one person, or a group of people. I wrote it because it is wrong to invite autistic people into a group, then use their communicative challenges against them. And I see that happening literally every week. Usually not to me.

I am fighting to help create a world in which the children of Rose and June will not be treated in the way that their parents treat autistic adults today. They are our kids, too.

And some of their parents really do think I fight only to make their mommies cry.

Where is there to go with people so determined to make everything about themselves?

Noah Britton: This is not what a feminist looks like. Feminists are not shirts.

Noah Britton is most famous for co-founding the first comedy troupe composed entirely of people with Asperger's, Asperger's Are Us. He also performs music by himself and with the band The Best Thing Ever. In 2012 he was named as a public member of the federal government's Interagency Autism Coordination Committee. In his spare time, he is a psychology professor in Boston, MA.

The first part of our conversation is here.

Landon: What about Aspergers and music? How does that relate?

Noah: It’s harder for me as an aspie musician to get a career going, because the thing that everybody likes the most is totally removed from what I do. As my dad would say when he would be doing product tests for Procter & Gamble, “When you’re testing out which butterscotch flavor is the best, you have to first find the people who hate vanilla, or else everything you give them is going to be judged on how similar it is to vanilla.” And my music I think it going to be really, really appealing to a narrow range of people who like pop music and who also like the stuff that I’m good at, which I don’t think is the Aspergers, which is storytelling and simplicity.

I kind of wish I had been given the chance to play drums or something when I was young because I have phenomenally great timing. I have bad coordination, and I’m incapable of creating what’s called a groove. When I play drums, I play based on each beat separately. But what I’m terrible at is if you say, “Just follow along with the music and feel it.” I can’t do that, so I’m really bad at backing someone up unless I know what I have to do from the beginning. I’ve played lead drums before where everyone has to follow that, and that I think that sounds really good, although it’s not the most popular thing I’ve done.

"An Amalgam of Many Extreme and Obvious Things" 

And also—the natural imitative ability that I believe many of us have. I learned to sing by listening to Steven Merritt and thinking, “I can sound exactly like this person.” This was foolish of me, and this is a bad way to make music, but this was how I got started. I asked myself, “Okay, who are the best at each aspect of music? Well, Steven Merritt is the best singer, so I’ll sing like him. And Calvin Johnson’s the best dancer, so I’ll dance like him.” This made me an amalgam of many extreme and obvious things. If you do that, but you’re an amalgam of more general things, if you say, “I want to rip off Black Sabbath’s guitar riffs but also have the energy of Matchbox 20,” no one’s going to call you a poser. I was too specific, and this made a lot of people not respect my work. It took a long time for me to even recognize that I was doing this.

Landon: I think that all human beings construct themselves largely out of bits and pieces of the other people they encounter, but I think with us those pieces tend to be bigger. There is a relationship between the tendency some of us have to take on the traits of one person to the extent that it is kind of uncomfortable, and speaking in chunks of movie dialogue.

Noah: Yeah, I think scripting, echolalia, and imitating body language all have the same underlying drive. I don’t know what that is, and I don’t think anyone does, but I’ve puzzled over it quite a bit. Why is that soothing? Why is that appealing? We don’t really know. Maybe our hypersensitivity makes it easier for us to deal with something that is extremely different if we are similar to it.

Landon: But how original is anything, really? I’ve done a lot of performing, a lot in musical theater. I had a very similar experience early on with realizing I could do it exactly the way the guy on the record did it and really having to work against that tendency as a performer. One of the things I started doing early in my teens was trying to find different performances of the same material. So then I could see how one actor would do it, and then another, and then I would start to see original possibilities. But I also feel like I worked against that too much. That there were times I should have allowed it be just the way it was on the record. It would have been more fun for me. It would have been more satisfying for the audience. Am I really such a genius that every interpretive choice has to be original to me?

Noah: It is something to struggle with, because I was motivated by thinking “Who do I love the most in this field? I want to do what they’re doing.” But there are other artists, who are the truest artists, who say, “I have something that I want to express. The End.” And their inspiration doesn’t come externally; it comes internally. I think those are the people that get the most positive response, and deservedly so, but it is challenging to become one of those people when I have this overwhelming desire to imitate artists who I love. And as a student of music, it’s been really hard to separate myself from the stuff that I love.

Did you see Amanda Palmer’s cover of me? Yeah, Amanda Palmer covered me for Neil Gaiman at this huge show they did. I was pretty proud of that.

Landon: Wow!

Noah: Yeah, her and I did a show together the night before, which was like the best show of my life. It was my biggest audience, and we did a couple of duets. It was an amazing experience getting to play my singalongs for a thousand people. And the next day she decided to cover me, which was pretty great. And Neil Gaiman tweeted about it because it was a pretty good performance.

Click here to read more and to hear Amanda Palmer and Noah performing together.

Noah Britton: "Ask me about my fear of strangers"

Noah Britton is most famous for co-founding the first comedy troupe composed entirely of people with Asperger's, Asperger's Are Us. He also performs music by himself and with the band The Best Thing Ever. In 2012 he was named as a public member of the federal government's Interagency Autism Coordination Committee. In his spare time, he is a psychology professor in Boston, MA.

I spoke with Noah by telephone two days after the Boston Marathon was bombed.

Landon: You’re in Boston, right? Are things going okay for you since the bombing?

Noah: Yeah, I had an incredible coincidence that happened that day. I got asked to go there by my girlfriend, and I said, “No, don’t want to watch a marathon.” And we fought about it and didn’t go anywhere and broke up. And in the midst of breaking up, we heard about this bombing that we would have been a part of had I not said no. And that was pretty amazing. I felt glad that we spent the day breaking up instead of getting killed. But I’m doing fine. Thanks for checking. How are you doing?

Landon: I’m doing fine. You know, I don’t like April very much. Autism Awareness is pretty exhausting.

Noah: I know what you mean. The one thing that’s been helpful for me is that Asperger’s Are Us always gets shows every April because of it.

Landon: Yes, it does build traffic and get people excited. But people who are excited about autism are kind of hard to deal with.

Noah: Yes, excited people in general aren’t rational and they won’t listen very well. I was just teaching about this.

An Algebraic Approach to Humor

Landon: Everyone in Asperger’s Are Us has Asperger’s syndrome. Do you find that it’s a very different experience to work with them?

Noah: Absolutely. I love it, and we get along really well, and we come up with similar stuff. The camp where I worked where these guys were campers was filled with similar senses of humor, and I would latch onto the ones who were most similar to mine. There really is something about how we can make the same jokes with each other all the time. We approach humor very algebraically: “Okay, reality is this, so what can we change about reality that’s funny?”  As opposed to approaching it like a lot of typical comedians do, where it’s, “How can I make the audience empathize with me? How can I tell them something that they understand?” And that doesn’t interest me when I watch comedy.

Click here to see a sketch from Asperger's Are Us and keep reading.

I’ve gotten several messages about the new NBC series Hannibal, based on cannibal serial killer Hannibal Lector and other characters from the Thomas Harris novel Red Dragon. Some have been elated about an autistic hero. Others have been apoplectic about negative stereotypes wrongly associating autism and violence.

It’s interesting that both the executive producers of Heroes have gone on to autism-related shows. Tim Kring did Touch, which I hate. Bryan Fuller is doing this one, which, based on the pilot, I sort of love, even though I understand why other autistic people may hate it.

Click here to watch the pilot and keep reading. There will be spoilers.