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?
Warning: strong language and Bible verses.
Luke 14 (New International Version):
28 “Suppose one of you wants to build a tower. Won’t you first sit down and estimate the cost to see if you have enough money to complete it? 29 For if you lay the foundation and are not able to finish it, everyone who sees it will ridicule you, 30 saying, ‘This person began to build and wasn’t able to finish.’
31 “Or suppose a king is about to go to war against another king. Won’t he first sit down and consider whether he is able with ten thousand men to oppose the one coming against him with twenty thousand? 32 If he is not able, he will send a delegation while the other is still a long way off and will ask for terms of peace.
Lynne Soraya tells a story that could have come directly from my life: she saw a sign for a library book sale and went, not taking into account just how taxing that situation might be for someone with her sensory sensitivity. She made it through and got home, then felt awful and didn't know why:
Sitting alone in the quiet house, it seemed that everything was OK – until a few hours later when I found myself getting frustrated at my computer. On edge, I suddenly felt a billowing rage overcome me. I wanted to scream and throw the computer against the wall. All this negative energy was boiling over, with no place at all to go – and simply no reason for it that I could see.
I gave myself a mental time out, took a deep breath, and asked myself what was wrong. That’s when I made the connection. Of course…the library. I was chagrined to realize that even after decades of living with this body, I still hadn’t realized the full cost to myself of such situations, and how long after the consequences can linger, and the many ways that they can disguise themselves.
For my own sake, I should have been more vigilant, but this is what comes of spending most of my life suppressing my differences instead of trying to understand them. Sensory overload is an assault, and is experienced as such. Recovering from an assault takes more than just removing yourself from the situation. It has emotional after-effects, too. Ones that can effect not only you, but those around you.
This is what so much of my life has been like. I try to do an ordinary thing and sensory or emotional issues make it way too much. Sometimes I can do it and sometimes I give up and go home. And afterwards, there will be pain, exhaustion, and anger.
Maybe the thing I love best about what Lynne has done is the light touch with which she indicates that part of why this cycle of sensory assault is so awful is humiliation. We should know better, but because our bodies and the situations we find them in are so unpredictable, we don't. We can't.
Sometimes, autism makes it impossible to count the cost.
So I hear through the grapevine that the Autism Bloggers group that this guy hurt my feelings in no longer exists.
I think this is good thing.
People got so distracted by the anger and the ugliness that this post inspired that I think they missed it was largely about counting the cost.
I was invited into that group as an autistic person, to broaden the perspective of a group made up mostly of parents. And then there was simply no effort made to establish norms that made that group accessible for autistic people. Instead, an atmosphere of competitive, mostly friendly sarcasm and snark arose.
And here's the thing-- if you don't know that aggressive sarcasm is going to disable many autistic people and make it impossible for them to participate in a conversation, you don't know enough about autism for it to be okay for you to run an autism blog. You need to shut it down and shut the fuck up.
Or, if you think that autistic people like me are "too angry" and you are willing to deliberately exploit our communicative challenges in order to discredit us or entertain yourself, then you are simply an asshole. The idea that you are an autism advocate is a joke. You are not better than anyone else who uses someone's disability against them-- the teller at the bank who tries to give a blind person a $1 bill and say it's a $20 is only one step below you. If you think taunting and shaming autistic people is a public service, you also need to shut the fuck up.
Even if you are autistic yourself.
It is HARD for me-- I have to work at it-- not to use other people's autism against them when they make me angry. It's very easy to do it-- every middle school bully has figured it out. I don't always succeed because I am not perfect, but I do try.
If you are not willing to count the cost of treating autistic people with respect, of doing the really hard work of listening to us and helping us hear you, you need not to ask us into your little shindig to begin with. If all you can do is listen to people like yourself, then focus on them and leave others alone. Don't try to shut them up just because you don't like what they have to say.
Just because I identify as autistic myself, that does not mean I understand what life has been like for people who have lived with that label in a public way since childhood. Even if I get diagnosed, the majority of my life has not been lived in the same way that someone's has if they have lived through special education. Even though my best friends have kids who have challenges much more disabling than mine, I don't know what it is like to have those challenges and I don't know what it is like to parent those kids. I try to extend my knowledge and compassion. I work so hard at this that it hurts me. I still fail. I try again.
If you think you are doing an autistic person or her parent a favor by listening to her, you probably aren't ready to hear what she is saying.
Work on yourself first.
They'll be there, when you've counted the cost.
One of my primary metaphors for the autism community is the LGBT community. And, by the way, my choice not to include other letters there is deliberate, and I will not appreciate being corrected for it. Because I'm talking about history, and history is specific.
It's hard for parents of autistic people to understand that they have power that we do not, because they are themselves a disenfranchised community. How can we say that you have all the power when you are powerless to affect the changes you really need?
Well, there is power, and there is power.
And I think it might help a little bit to think about the differences between the power that the people represented by the letters L,G, B, and T have.
I'm a gay, white, man who lives in California. There are powerful organizations like the Human Rights Campaign who are going to make sure that my interests are not ignored. If I were a trans woman of color who lived in Arkansas, who would be looking out for me? Me and my friends, that's who.
There are gay men who are taken seriously, like Nate Silver. There's a lesbian in the Senate. The L and the G are doing a lot better than the T, even though we aren't doing okay. The appearance of trans people on television or in sports can still give rise to shameless and outrageously bigoted reactions. Trans teens are less safe than gay teens, and gay teens are not safe. This segment of The Melissa Harris-Perry Show was unusual for showing real trans people in a substantial conversation on TV. I can see a gay guy talking about gay stuff on MSNBC every week. I can see a lesbian tell me the news every night.
I have the HRC behind me. I get heard in ways that transgendered people don't. I hate that. Actually, I don't like the HRC. I wish their top priorities were passing laws that made it illegal to discriminate against LGBT people in hiring or housing and getting LGBT people appointed to political positions. Instead, their top goals have been marriage equality and the repeals of Don't Ask Don't Tell. Those are good things, but they won't save as many lives as making it illegal to deny homes and work to trans `people and gay people in the states where that is still legal (most of them).
Do I have equality as a gay man? No.
Does this piss me off? Yes.
Do I have tremendous privilege, in comparison to trans people, especially if they aren't white, especially if they don't live in very blue states? Of course.
Is that my fault? No.
The parents of people with autism are represented by Autism Speaks and other powerful organizations. Parents may disagree with what Autism Speaks or the Autism Science Foundation do, they may cringe at some of the statements made by their leaders, but Autism Speaks is almost always going to get a seat at the table if they ask for one, just like the Human Rights Campaign. The HRC is never going to have a board made up mostly of B's and T's, just like the Autism Speaks board is never going to favor the interests of autistic people over the interests of our parents.
And in some ways this is fair and right. Gay people built the Human Rights Campaign and have contributed most of the money that makes it strong. Parents founded Autism Speaks and have paid to make it as powerful as it is. It's not wrong to have this power.
We just have to acknowledge it.
I don't think the organizations run by autistic people have a combined annual budget of $2 million dollars. Autism Speaks alone reported income of over $50 million and assets of over $20 million of 2010.
There's just no comparison.
And it's okay that it makes me angry that the parents of autistic people have something like 100 times the power that autistic people do. This should make me angry, it's an unhealthy state of affairs.
Just like it's right for transgendered people to be frustrated that gay people have power that they do not.
And in each case, some members of the more powerful minority group buy in to the majority prejudices against the less powerful minority group. Christian Siriano, Dan Savage, and Ryan Murphy are all white gay men who have wounded the transgender community with unthinking bigotry. Murphy and Savage have both also done wonderful things for transgendered people.
Many parent advocates for autistic people have sometimes acted with unthinking bigotry toward autistic people. Several of those same people have also done wonderful things for us.
It's good for trans people to praise Ryan Murphy when he gets things right and complain when he gets things wrong.
It's good for me to do the same for parent advocates.
One place where both autistic adults and trans people still have to fight that gay people and the parents of autistic kids don't have to is get acknowledgement that we even exist. My friend Jay Jackson told me this story:
I look young and was going to play a teenage patient for the local hospital's "simulation day", where they would run medical simulations to test out their new pediatric ER. Once they found out I was transgender though, they asked me not to play a patient because "it is very unlikely that a young person would be transgender".
Even the MEDICAL COMMUNITY is grossly misinformed about transgender issues and it causes a lot of hurt.
I can imagine an adult with Asperger's syndrome being turned away for the same reason. I would not be as a gay man-- although someone might find an excuse to get rid of me for being gay, they would not tell me to my face that gay people are unusual. They might get rid of the parent of an autistic kid because they think it will be too much trouble to make things work, but they won't doubt your existence. That still happens to autistic adults. It still happens to trans people.
There is power, and there is power.
Lots of drama, lots of conflict, things turning out okay.
I wanted you to see me after all that.
I wanted you to talk to you.
I went through a stage last year when I was making videos, and eventually I will make new ones (the death threats were discouraging), but, for now, I'd like to ask you to watch this one from last March. It's for parents of autistic people, but I think autistic people and allies will also get something out of it.
For those of you who have trouble processing audio, or just don't have time, here's a quick summary:
I do not intend to hurt your feelings or make you feel guilty when I acknowledge the painful parts of my life.
I am probably not that much like your child. No autistic individual is-- and I'm not diagnosed. I'm self-identified, and, although I have a little knowledge and expertise to back that up, I should not be assumed to be typical of any sort of autistic experience.
Listen to me, but not just to me. Find a variety of autistic perspectives. None of us is always right.
No one is a perfect parent. Don't beat yourself up over mistakes. Learn not to repeat them
Observe your child closely. Record your observations and base your plans on them.
Have high expectations of your child.
Love your child unconditionally.
Lots of people have asked so-- I'm fine.
Ready to move on.
In fifth grade, Henry wanted to try out for the school play. I was extremely nervous, but also overjoyed that he wanted to participate. I wrote a note explaining to the theater director that Henry had autism and needed specific instructions on when and where to do things.
After the play was over, all the children eagerly emptied out of the auditorium to find their parents. The crowd slowly dissipated, but still there was no Henry. I started to panic and began to search the school.
I found my son waiting in the back of the cafeteria, all by himself. At the end of all the rehearsals, the kids had been told to wait in the cafeteria and not to leave until the theater teacher had dismissed them. Henry could not identify the difference between rehearsals and the actual production, so he'd gone to the cafeteria, as always, and waited to be dismissed.
Anna was born four years after William. How did you have the courage to have a second child?
Jay: That was probably one of our hardest decisions because autism does have a genetic component. We were scared that we’d have another child with special needs, and that would have been pretty devastating.
Nancy: Brave and stupid are flip sides of each other. With Anna, I realized what a leap of faith it is to have a baby.
And how did she turn out?
Jay: She did have special needs — she was in the “gifted” program during elementary school.