Brenda Rothman's white autistic son Jack wants to grow up to be bald and black. And, while she tells him that only part of that is possible, she's okay with what him liking things that are different from himself, and talking about it. Even to bald, black strangers at the store.
She believes that we are quiet about differences because we are ashamed of them:
I wish we could see, like Jack can, that differences are what makes us interesting and beautiful. If we appreciated the beauty of black people, we'd see them celebrated like Barbie images are. If we appreciated the beauty of learning differences, we'd see it embraced in schools, not fought against. If we appreciated physical differences, we'd see it as more than gold-medal inspiration for positive thinking. If we incorporated a daily appreciation of differences - for skin colors, learning differences, physical disabilities - in our families, we could change the world.
One of the most important lessons that any parent can learn is how to listen to an individual child. Three mothers describe listening to their autistic children in ways I would like to learn from.
Brenda, at Mama Be Good, talks about how her son's unhappiness can be communicated in ways that make it hard to understand what he needs:
My child is autistic. He has a different way of expressing his feelings. His sorrow at leaving a fun place looks like anxiety, like aggression. But it was sorrow, bottled up tight inside him, pressing on his chest and his head, making it hard to breathe.
Would an NT child be upset about leaving a fun, exciting place? Sure. And the same is true for my child. It looks different, but it's the same feelings. And I want to treat those different expressions the same way. Comfort the NT child who is sad and expresses it the way we expect. Comfort the autistic child who is sad and expresses it differently.
Outrunning the Storm wonders about how to handle situations in which her son's behavior attracts the unwanted attention of strangers-- should she explain about his autism?
How, I wonder, can it be so hard to get something so important right.
Then it finally occurs to me, in a stroke of genius, much, much later than it should have; the right answer is to ask him what he wants.
So, I remind him of the situations and ask him if he would prefer that I try to explain to people what his needs are in those situations so they understood him better or if he would rather just move on and let people think what they want. In saying it out loud, it is clear to me what I would want at his age.
Its embarrassing, he tells me. He doesn’t care what people think, he just wants to move on when it’s over. He doesn’t want to hear people talk about it.
Jean, at Stimeyland, asks her son about a noise that he is making, and not only gets the message he is relaying but embraces his way of communicating it:
I tell him I understand and then I think about the noise and how it isn't a noise that most people tend to make. And I start to say to him, "Instead of making that noise, maybe we could have a code word for when you are too overwhelmed..."
And then I stopped.
Because I had just reread Quiet Hands that very morning. And it was fresh in my mind that not allowing free expression, even in unexpected (by NTs) ways is maybe more disabling than anything else I could do.
So I paused and then I asked, "Does it make you feel better to make that noise?"
And he said, "Yes."
So I said, "Good," and the subject was closed.
Tina Shallis responds to the stranger at the store who said that Tina's 7-year-old autistic son "needs help":
He is oh so handsome, which you may have noticed. When you look into his eyes, you can see what a sweet soul he has. He has just the cutest smile. He giggles like there is no tomorrow and it is so infectious it brings you to tears. He loves to be snuggled. He climbs into your lap for a big big hug. His heart is full of love! He is so smart. He likes to sing and he likes to dance and he is very happy and fun to be around. He is so amazing and you would be lucky to know him.
So, to your comment “he needs help,” you are right, he does. And that, my friend, is why we were in that store and near that bathroom for that amount of time. We are committed to helping him (despite how difficult it can be), teaching him so that he can learn to function and be a part of this community. What he needs is for people, all people, to be understanding and compassionate, to lend a hand or give a pat on the back. To recognize his struggle and perhaps say a prayer for him as we did for you before tucking him into bed tonight.
Earlier this summer, Social Science Research published a paper by Mark Regnerus that claimed to answer this question: How different are the adult children of parents who have same-sex relationships? The paper ignited a political war in some parts of the scientific and religious communities that still continues, with calls to retract the paper and claims that criticism of Regnerus and his methods constitute a liberal war on science.
This farce tells us a lot about what happens when scientists approach a controversial, highly visible, disenfranchised minority population about which people hold strong and highly divergent opinions. Let's use it as a parable for what happens when neurotypical social scientists study autistics.
1) There is a presumption that different is less. Regnerus was motivated to begin his research because his religious beliefs made it impossible for him to accept the conclusion seen in previous studies-- that same-sex couples were equal or superior to heterosexual couples as parents. Most NT researchers similarly begin from a point of believing that, to the extent the autistic brain and behavior are different from their own, they are inherently inferior.
2) Scientists eagerly over-generalize from miniscule samples. Regnerus says his study proves his study proves all sorts of bad things about the children of same-sex couples:
The basic results call into question simplistic notions of “no differences,” at least with the generation that is out of the house. On 25 of 40 different outcomes evaluated, the children of women who’ve had same-sex relationships fare quite differently than those in stable, biologically-intact mom-and-pop families, displaying numbers more comparable to those from heterosexual stepfamilies and single parents. Even after including controls for age, race, gender, and things like being bullied as a youth, or the gay-friendliness of the state in which they live, such respondents were more apt to report being unemployed, less healthy, more depressed, more likely to have cheated on a spouse or partner, smoke more pot, had trouble with the law, report more male and female sex partners, more sexual victimization, and were more likely to reflect negatively on their childhood family life, among other things.
He is making those claims based on a sample that included only two people who were raised by a lesbian couple for their entire childhood. None of his subjects were raised by a gay male couple for longer than three years:
It isn’t Regnerus’s fault that so few gay and lesbian -couples were raising children in the 1970s, ’80s, and ’90s. He tried to boost the numbers by expanding his definitions. He divided respondents into eight family types, including stepfamilies and single-parent families, along with LMs and GFs and IBFs. If a respondent said his mother had a same-sex relationship at some point in his childhood, he was counted as an LM—even if he was also the product of a divorce or raised in a single-parent family. That’s how Regnerus got the number of LMs up to 175 and the GFs up to 73.
To the extent that the dispute over Regnerus’s study is scientifically serious and not brute cultural warfare, it largely turns on whether this way of boosting the sample is legitimate. Many reputable social scientists, including the three commenters recruited by the editor of Social Science Research, say it is. His critics say Regnerus was stacking the deck. Social science is unanimous that children raised in unstable families—divorced parents, for example, or stepfamilies—have worse outcomes later in life than children from stable families. By counting these people as LMs or GFs (assuming their parents had a same-sex relationship), Regnerus ensured that those categories would show less favorable outcomes. With so many children of gays also being children of divorced or single parents it could hardly have turned out otherwise.
One of the biggest troubles with autism research is that huge conclusions are often drawn from samples nearly as small.
3) Scientists create their own definitions to match their findings. John Corvino asks:
What do the following all have in common?
- A heterosexually married female prostitute who on rare occasion services women
- A long-term gay couple who adopt special-needs children
- A never-married straight male prison inmate who sometimes seeks sexual release with other male inmates
- A woman who comes out of the closet, divorces her husband, and has a same-sex relationship at age 55, after her children are grown
- Ted Haggard, the disgraced evangelical pastor who was caught having drug fueled-trysts with a male prostitute over a period of several years
- A lesbian who conceives via donor insemination and raises several children with her long-term female partner
Give up? The answer—assuming that they all have biological or adopted adult children between the ages of 18 and 39—is that they would all be counted as “Lesbian Mothers” or “Gay Fathers” in Mark Regnerus’s new study, “How different are the adult children of parents who have same-sex relationships? Findings from the New Family Structures Study” (NFSS).
Most of the criticism of Regnerus has focused on the way that he defined gay and lesbian parents:
Regnerus did not ask respondents to give their parents’ sexual orientation; merely whether they knew if their parents had at some point engaged in a homosexual relationship, for however long. The parents may or may not have considered themselves gay, then or now. And many of these children were not raised by a homosexual parent: There were GFs who never lived with their father at all. As a close reading of its title suggests, this is a study of adult children of parents who had same-sex relationships. And the Family Research Council’s use of the present tense is jumping the gun. The study is retrospective—a picture of the nation during the last 40 years, much of it before the gay rights movement and the widespread social acceptance of homosexuality. For all we know, and as Regnerus readily admits, the instability, and hence the bad outcomes, could be largely traced to trauma caused by the antihomosexual prejudice of an earlier time.
Regnerus’s handling of the data led to the further objection that he was comparing apples and oranges: children raised by a biological mother and father in stable families, on the one hand, and on the other, children raised in families that were by definition unstable. If Regnerus had wanted to isolate the effect of sexual orientation on child-rearing, he would have had to compare like with like: stable heterosexual families with stable homosexual families, one-parent heterosexual families with one-parent homosexual families, and so on. That he didn’t do so is taken by his pitiless critics as a sign of either incompetence or bad faith.
“Here’s the way I put it,” said Gary Gates, the demographer. “It’s like he took a group of men who never smoked and compared them with a group of women who smoked three packs a day. Then he checked lung cancer rates. And he concluded that being a woman puts you at greater risk for lung cancer. But of course the cancer rate has nothing to do with being a woman.” In the same way, he says, we can’t tell from Regnerus’s data what role homosexuality—as opposed to divorce, welfare, single-parenthood—played in the bad outcomes.
Autism researchers play a similar game when they take respondents from a general pool, give them a test Simon Baron-Cohen made up, ask them some questions about God, and claim that the results prove that autistic people aren't religious.
4) Hot topics distort the peer review process. After he was attacked for his decision to publish the paper, Social Science Research editor James Wright asked board member Darren Sherkat to conduct an audit of the process. Citing the problems described above with how Regnerus defined gay and lesbian parents, he concluded that it should not have been published. Sherkat also found that the scientists who conducted the peer review were biased and sloppy:
In his audit, he writes that the peer-review system failed because of “both ideology and inattention” on the part of the reviewers (three of the six reviewers, according to Sherkat, are on record as opposing same-sex marriage). What’s more, he writes that the reviewers were “not without some connection to Regnerus,” and suggests that those ties influenced their reviews.
He declined to be more specific in an interview, saying that he was obligated to protect their identities. “Obviously,” he concluded, “the reviewers did not do a good job.”
Editor Wright admits that he may have been influenced by the high profile nature of the subject:
In his audit, Sherkat reveals that all the reviewers declared that the paper would generate “enormous interest.” Enormous interest leads to citations and downloads, which is how a journal’s relevance is judged. The higher the impact of its papers, the greater its prestige. Wright acknowledges that he was excited about the interest the paper would no doubt inspire, and he wonders in retrospect if “perhaps this prospect caused me to be inattentive to things I should have kept a keener eye on.”
Take a moment and ask yourself who is doing peer review for social science on autistic people. Who is even asking them to disclose and examine bias? And how many things are getting rushed to press because autism is a topic of popular interest and urgency?
5) Science cannot answer questions of human worth. Thomas Jefferson loved science and was ambivalent about God. But when he wrote the Declaration of Independence he said that our equality was self-evident. He extended it in language only to men, and he extended it in practice only to white men like himself, and he was wrong in both those things, but Jefferson was right not to base his argument on experiment or rationality:
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
We don't base our belief that gay people should or shouldn't have the right to get married and have kids on science. We base it on what is self-evident to us.
Autistic people are people. Allowing us to be defined all the time as research subjects can keep others from seeing our self-evident equality.
Susan Senator, whose son Nat is beginning life as an adult, looks back a few years and tells parents of young autistic children who feel like they do not want to leave the house that it gets better:
You won’t always feel like this. Oh, I know you are not me, but in a way, you are. If you’re an autism parent, you probably know what I mean. (And before anyone screams and accuses me of blaming autism, just stop it. I’m not blaming our children, or autistics; but I am saying that parenting, especially with this particular disorder in the mix – is tough to handle in one way or another and there’s no getting around that. It’s hard, that’s the truth. For our children and for us. There is so much unpredictability with autism in their lives, and thus there is so much unpredictability in our lives, when they’re young especially, so much worry. What might he do? Will he be unhappy there? Angry? Overstimulated? Will others understand? Will they stare? It’s very, very hard and we love them and those two facts exist side-by-side.) How will he be when he’s older? Should I be doing more to help him? Sweat, sweat, sweat. So much effort and stress. I just wanted to go to bed. Or at least just stay in my house, eat, and watch TV.
Sometimes it’s easier just to stay indoors. So do it, if you have to. I’ll tell you what: stay inside, but when you feel stronger, go out. It doesn’t last forever, you eventually figure it out. Just like them. Because here’s the thing no one is really talking about it — our guys, especially our guys, seem to blossom as they get older. Not only is Nat’s adult life not a dead end, it is a beautiful beginning. And I am giving you this sugar (coat)-free.