How I love to hate you.
Today, Slate answers the question "What if the media treated LGBT people the way they treat autistic people?" by publishing a post from Quora(!) and titling it "What Is It Like to Have an LGBT Child?"
The title is part of the problem. Although this piece of writing emerged from a general discussion about parenting LGBT people, it is about one parent's experience of raising a gay son. Just like raising a boy who is diagnosed with Asperger's syndrome in middle school is not very much like raising a non-speaking autistic girl with intellectual challenges, raising a gay son is not very much like raising a transgender girl. This mother probably does not mean to present her experience as anything more than just that-- her experience-- but the way it is framed suggests that it is more universal.
Her attitude is basically great. She loves her son and has no trouble accepting him for who he is:
David was very definitely born gay. One of his favorite words was "pretty," which he would chant over and over while stroking my clothing. He liked to do waaaay too many things most folks consider "little girl" activities, and he didn't care for many "little boy" activities, at all.
Well, we didn't care. Dave's Dave—cute, funny, scarily intelligent, curious, and could put ideas together in a way that got him in more trouble than not. In junior high, he told us about a girlfriend, and went to a few dances, but we didn't do any sigh of relief or anything because we really didn't care one way or the other. His two brothers didn't care, either, and they were 17 months older and younger; it just wasn't something we made any kind of deal out of.
I would love for all gay kids to have parents who are this accepting, and I think getting narratives like this out to the public is still important.
I would not bother to complain about the problems with this piece for a gay audience-- they don't matter very much because this is not typical of how gay people are seen in the media. Reporters are more likely to speak to gay adults about gay rights issues than to ask our moms about them. There are gay people with TV shows who can talk to their audiences about LGBT issues. The HRC has a bigger budget than PFLAG.
These things are not true for autistic people. Reporters are much, much more likely to talk to our parents than to us. Policy about autism is set by organizations dominated by parents that give autistic people no more than a token presence. They would never think about holding a government hearing on autism and inviting parents of autistic people as an afterthought.
We are not equal.
Gay people and straight people are not equal, either, and that matters more to gay people than to straight people.
Even to our loving and accepting parents:
Apparently, now that his state has passed gay marriage laws, Dave and Rob will be getting married soon. That's nice, I'm glad they get a chance to be like everyone else. But to me, it doesn't matter—that's Dave, and that's Rob, and that's fine with me.
Benign indifference to marriage equality is not a pro-gay position. And Dave and Rob will not be like "everyone else" because they get to be married in their state-- the Defense of Marriage Act still means that they will not have federal marriage rights, and those are the important ones. Just because Dave has the same status as her other children to her, that does not mean he has equal status in the world.
And this "that's nice, dear" attitude would never get marriage laws changed if people who held it made all the decisions about policy.
To this mom, her son's gayness is not important, and she has a hard time respecting the idea that it might be important to him:
So, I think for us it worked well because no one really cared—except Dave, and he never thought he was hiding some big secret, he just hung around with folks who told him how traumatic or life-affirming or soul-cleansing coming out would be, so he wanted to try it. I always get a slight cringe when I think that I ruined that for him—but forevermore! Why would he think we cared? We always supported him because he was Dave, not because he was gay
That's the same voice that says, "My son is not autistic. He has autism, but it does not have him."
It's the voice of someone who has accepted their child despite a difference.
It is not a voice that can or really wants to advocate for making people with that difference equal.
And, again, not a big deal for gay people, because our voices are seen as being more important than our parents when it comes to making decisions about policy.
A VERY big deal for autistic people, who are still usually seen as either being not competent enough or too competent to have valid things to say about autism.
The Washington Post discusses a report that documents some of the stuggles disabled parents face:
The new report, titled “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,” estimates that 6.1 million U.S. children have disabled parents. It says these parents are more at risk than other parents of losing custody of their children, including removal rates as high as 80 percent for parents with psychiatric or intellectual disabilities.
Parents with all types of disabilities — physical or mental — are more likely to lose custody of their children after divorce, have more difficulty accessing assisted-reproductive treatments to bear children, and face significant barriers to adopting children, the report says.
The story also documents what bigotry against people with disabilities looks like, in the person of Judith Shagrin:
Schagrin, the Maryland child-welfare official, said she found parts of the report troubling because they seemed to suggest children were sometimes removed from their families only on account of parental disabilities.
“That’s not why they are taken away,” she said. “They are taken away because the disability has continued to the point where there’s an episode of maltreatment or neglect.”
She said one recourse is to find members of the extended family — or other types of support — to help a parent with psychiatric or intellectual disabilities care for a child. But she said this approach could be taken too far, for example if a mother with intellectual disabilities was placed in a group home with other disabled parents.
“What kind of way is that for a child to live — being raised by a shift of caregivers in a mom-and-child group home?” she asked. “Is that really better than an open-adoption agreement?”
This is same reasoning that was used to keep Black people in their place during the Jim Crow era-- they weren't kept from voting because of their race but because they failed a literacy test. Judy warns and warns them and they just insist on continuing in their disability! They don't have sense enough to just stop being disabled so they can take care of their kids! It's not her fault!
Karla Fisher is an autistic adult who mentors young people on the spectrum. She shared with me this post from Tasia, whose son Nick is one of the kids Karla works with.
What she is saying is both important and difficult to understand. Parents and teachers usually focus only on what happens immediately before a child acts out. But, especially with an autistic kid, the actual causes of the behavior are likely to be ongoing issues that are making it hard to cope:
Example: Before we had his current IEP in place, Nick often had meltdowns after school (and in school, too). He would yell, call me names, throw things, and was becoming ever more violent. I saw this as bad behavior and issued consequences for it. He would argue and yell even more and we’d get locked in a spiral of me trying to make him stop and him just getting more angry.
I thought I understood what triggered his meltdowns but needed help stopping them. Karla informed me that the things I thought were triggers were happening way too late in the game and that I needed to look for root causes. I’d say he had a meltdown because I asked him if he had homework. After getting more details, she’d say no, he had a meltdown because he hasn’t gotten enough sleep this week and he’s not doing enough physical activity, on top of being overwhelmed every day by school. The homework question may have been the last straw, but it was not the root cause, and punishing him for not answering politely would not stop this meltdown or future ones.
Disability Scoop highlights a new study indicating that people who have children with disabilities need to find a "Goldilocks zone" of parenting-- not too strict, not too permissive, but just right:
“When you think of parenting a child with a developmental disability, it might be more intuitive to be authoritarian and assume that the child can’t figure out things alone. On the other hand, with a child who has autism, it may seem easier and less contentious to be more permissive with the child and thereby avoid conflict,” said Tina Dyches of Brigham Young University who also worked on the review. “But there needs to be a balance. A child with a disability should not be subject to different rules in a family, nor be the center of a family.”
Parents of autistic children are often urged to be extremely authoritarian (ABA should never be all day every day, not matter what anyone tells you) or extremely permissive (you really should have a life of your own that does not revolve around imitating your child). "Positive parenting," which aims to fall in between these extremes is best for all kids, including those with developmental disabilities.
I wish the methodology behind this were better-- it's impossible to do the sort of review they are claiming they did meaningfully with the small amount of data available (14 studies). I'm mentioning it anyway because I think the apparently obvious lesson the researchers draw from their work is often ignored.
Via Karla's ASD Page.
I am grateful to Alexis Magnusson for her courage in admitting that she hit her six-year-old autistic son:
This was two years ago. It had never happened before and it has never happened since (and I feel a need to explain that it was opened handed and did not leave a mark... but it was so beyond wrong). I can give you every reason as to what brought me to this point: I hadn't slept for days because Abby had pneumonia, that this had been the third day in a row that I had to pick up Casey early from school because he was "a danger to himself and the other children in the classroom" and there was "nothing more they can do," or that he had been screaming at that point for three hours, and in that time, he had bitten, kicked, punched, and thrown chairs and shoes at me and both of his brothers -- and was then threatening to hurt his baby sister. But you know what? Nothing I can say could justify my actions there. I didn't hit the school, the pneumonia, or the the part of his autism that makes him rage. I hit my son. My beautiful boy.
It kills me to put this out in the public. It kills me to relive this day. My heart still aches at the thought of causing harm to my beautiful little boy. So then, why am I telling you this? Because I think this is a conversation that is important. We as parents of children with autism feel a need to be "super parents." I felt a need to fit myself into a mold that I thought a special needs parent should fit. I didn't ask for help because I was terrified of telling someone that I couldn't handle what was on my plate. I wanted to look the part, and even more so, I wanted to FEEL the part. I had a lot of people telling me how great I was based simply on the diagnoses of my children. I wanted to live up to what I thought I should be. In so doing, I had run myself ragged, was overwhelmed, overtired and pushed beyond my limit.
I hope that, rather than judging her, we will remember our own imperfections and get the help we need if we are in danger of hurting ourselves or others.