"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?
So mostly what I used to do here is try to bring together news about autism.
And I've mostly stopped doing that for now.
And I want to explain why.
I got tired of the stories they tell about us.
One of the things I learned from following the news very closely for a few years is that mostly reporters tell the same stories, over and over. They just fill in the blanks with different names.
These are the stories people tell about autism:
1) Autism is ruining everything! And it's getting worse and worse!
This is your basic Autism Awareness Horror Story. It's about using the raising rates of diagnosis to scare people into giving someone money.
2) My autistic child is ruining my life.
Somebody's mom or dad talks about how the stress or expense or scary behavior of autistic children is ruining their lives. It's about getting more services.
3) This causes autism.
Everything causes autism! The internet, old dads, abused moms, antidepressants, highways, cleanliness-- whatever! This is about using the word "autism" to bring attention to some other thing that someone is all excited about.
4) Autistic person does thing
Described brilliantly by Zoe Gross here.
5) Someone did something nice for some autistic person.
I like this one.
6) This will cure autism.
No, it won't.
7) Someone did something awful to some autistic person.
I hate this one, but it's the one people read.
8) Some autistic person did something awful.
I hate this one, too.
What do we learn about ourselves from these stories?
That people view us as a problem.
That they think we are less than they are.
We know that.
Now we start teaching them that we are more than they think we are.
Now we start building structures to build each other up, because the tearing down is done.
The story they tell about us isn't good enough.
So we tell a better one.
April 4, 2013
Since I decided to go with the incendiary headline, let's get a few things out of the way first.
1) I am not one of those atheists who believes that everyone who is not an atheist is stupid or bigoted. I believe in religious freedom, not universal atheism. I like and respect religious people. I believe that religions do both good and bad things. I don't think all religions are equal but I try to treat them all with equal respect since I don't share any of them.
2) Lots of autistic people are atheists, but lots are also religious. There is some research indicating that we might be less disposed toward belief than others. I am skeptical of this research-- I think maybe the way autism has been defined by some scientists (extreme male brain) may skew it. I know many intensely, and beautifully, religious autistic people.
3) My autism does not prevent my from being able to believe. I have been a Christian. I have been a Buddhist. I have benefited from being part of both of those traditions. I'm not an atheist because the faithy part of my brain is missing or damaged. I have the capacity for belief, and I believe that the vast majority of other autistic people do, too.
Cardinal Timothy Dolan talked to ABC's George Stephanopoulos for Easter. Early this morning, I read what Dolan said about gay people feeling unwelcome in the Catholic church:
“Well, the first thing I’d say to them is, ‘I love you, too. And God loves you. And you are made in God’s image and likeness. And – and we – we want your happiness. But – and you’re entitled to friendship.’ But we also know that God has told us that the way to happiness, that – especially when it comes to sexual love – that is intended only for a man and woman in marriage, where children can come about naturally,” Dolan said. “We got to be – we got to do better to see that our defense of marriage is not reduced to an attack on gay people. And I admit, we haven’t been too good at that. We try our darndest to make sure we’re not an anti-anybody.”
And I thought, I want to see him say that. So I watched when the interview was on this morning.
Tasia writes wisely about her son Nick, whose science teacher is worried that he does not socialize more at school:
I told his teacher that there should continue to be zero pressure on Nick to connect socially in school. Nick uses school for academics only. Everything that does not lead to him getting a diploma we have eliminated—no homeroom, no assemblies, no pep rallies, no non-required electives. His custom school day uses up way fewer tokens than a regular day would, which allows him to thrive at school and get his education. If we added in social expectations, he would be overwhelmed.
She knows that Nick can interact socially when he has the resources:
Yesterday we were in Vernonia, a small town about an hour’s drive from home with a lake that has just been stocked with 3,000 trout. Nick had been planning this day for weeks, and while we waited for Karla to meet up with us, Nick connected with a handful of boys who were out here for the same reason. They talked about the best spots on the lake to fish, what kind of bait they were using, and who had caught what so far. None of them knew each other but they were instant fishing buddies. The old coots who are always around advised the young ones, and the young ones heeded them with respect. I watched him interact and wondered if his science teacher would even recognize him. The awkward, seemingly antisocial kid who ignores his classmates was demonstrating stellar social skills to anyone holding a fishing rod. This happens every time he goes fishing and there are other people around.
So what’s going on here? Does my autistic son lack social skills or does he not? The answer is that context matters. Socializing costs a lot of tokens. When Nick is in a situation that is already difficult for him, he won’t have those tokens to spare. He will need to focus on what really matters to succeed in that situation (in science class, success = learning science). When he’s engaged in a special interest like fishing, he is rebuilding his token supply, so he has plenty to spare for non-necessities like socializing. Because he does crave social contact, connecting with his fellow fishermen at the lake is a priority, unlike making friends in school.