Hannah Brown wonders whether it would be worth being attacked by zombies in order to have her autistic son behave "better":
Carl (Chandler Riggs), the son of the hero police officer Rick Grimes (Andrew Lincoln) on The Walking Dead, has had to flee home with his mother and his father's best friend, seen Atlanta blown up with napalm, been told his father is dead (he then turns up alive), been shot, and seen various strangers (including an adorable little girl) whom he has come to love killed and eaten by the undead. Throughout it all, he couldn't be calmer or more polite. He's cried a bit, and he played with a gun and a zombie (this show's equivalent of tossing a couple of water balloons out a window in the world as we know it), but has he ever really acted up? Has he ever misplaced his sneakers when it was time to flee, answered his father back or told his mother that the zombie infestation is really all her fault? That's the point, some might say: He's wise beyond his years. If that's what a little zombie voodoo can do for a normal kid, how might it help one with autism? Bring on the undead, I say.
Thanks, Hannah, for telling readers of The Huffington Post that autistic people are so awful that our parents hate us so much they would rather see the world destroyed than accept us as we are:
Is facing the end of humanity and living under a freezing cloud all the time a fair trade for having an utterly attentive, perfectly behaved kid? Hmmm... it's a tough choice. The bad news is: No one's making me the offer.
While some on the high-functioning end of the autistic spectrum blog about how their condition is just a form of eccentricity, those on the lower end often cannot talk at all and have difficulty expressing their needs, desires, and fears. Some will never be toilet-trained. Others engage in frequent self-injurious behavior—a nightmare for parents. Sleep disturbances are common. And while the high-functioning bloggers may disagree, it’s hard to find the blessing in a condition that prevents so many who have it from making any long-term, meaningful decisions about the direction of their adult lives.
The real "victims" of autism are ALWAYS parents. When autistic people injure themselves, the damage it does to their bodies and to their spirits is not worth mentioning or thinking about-- all Brown can see is "a nightmare for parents." Although it is not fair to hold her responsible for the headline, it does accurately describe her attitude-- "As Scientists Race to Diagnose Babies, Autistic Kids, Families Suffer On."
Brown mischaracterizes autistic bloggers in two ways-- the messages we send about autism and our functional level. She is telling a general audience that a disenfranchised group is unworthy of their attention. It's the old "If you can talk about your autism, you aren't autistic enough to know anything about what REAL autism is like" routine.
It makes me really sad that hateful parents like Hannah Brown get published in The Daily Beast, The Huffington Post, and The New York Times, while autistic writers ourselves tend to have no platform beyond our own blogs.
Autism does not have two faces.
Autism has hundreds of thousands of faces.
Most of us are neither high-functioning nor low-functioning.
Most of us have splinter skills-- areas of surprising strength and surprising weakness.
Most of us have not found the the supports and services we need to thrive.
It does not help to think of autism as having three faces: the nonverbal child, the savant adult, and MY CHILD or ME.
It does not help to imagine that everyone who is higher functioning than MY CHILD or ME is doing great and should just shut up.
It does not help to imagine that everyone who is lower functioning than MY CHILD or ME is getting tons of services and should just shut up.
It does not help to insist that any one of us is "the unseen face of autism."
We all are.
We need to stop screaming--
LOOK AT ME! LOOK AT MY CHILD! HELP ME ! HELP MY CHILD!
And start trying to see and help each other.
The May 14 issue of Newsweek carries a letter from me, a shorter version of this response to an article about the difficulties of parenting people with special needs:
I understand that the focus of Michelle Cottle's article was on parenting, but I think those of us with special needs should have had a chance to respond to people like Geraldine Dawson and Hannah Brown who are eager to promote their own interests by emphasizing the difficulties that we cause for others. Please, let us speak for ourselves."
If you want to understand how the version of "autism awareness" promoted by Autism Speaks makes it more difficult for autistic people to be accepted by society, please read Michelle Cottle's Newsweek's article about the difficulties of parenting kids with special needs:
Then there is the 800-pound gorilla in the room: autism. In late March, the Centers for Disease Control issued an estimate that 1 in 88 children now fall on the autism spectrum. While debate rages over the roots of the “epidemic,” this swelling population is placing increasing strains on our health-care, education, and social-services systems. A study released last month put the annual cost of autism in the U.S. at $126 billion, more than triple what it was in 2006. The bulk of those expenses are for adult care. Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, calls the situation “a public-health emergency.” And if you think things are tough now, she cautions, just wait until autistic teens start aging out of the education system over the next few years. “We as a nation are not prepared.”
Notice that Cottle felt no need at all to include the feelings of any disabled people, children or adults, in writing her article. And that's not okay. This is an article about what a burden we are, about how afraid people should be of us.
And TONS of parents of autistic people will read it, and love it, because it is honest about how difficult parenting us can be. They will see themselves in it, which is an unusual and gratifying experience, so they will not notice or care that we are missing.
And there are plenty of parents who angry and bitter about their experiences who are eager to share their unhappiness with a general audience. Hannah Brown is promoting a book, and doing so by going to as many major media outlets as she can and talking about how awful life is for women like her who have autistic children. She did this at The Huffington Post and The Today Show's blog. She did it at The New York Times. And Cottle got her into Newsweek, insisting again that the lie that 80% of parents of autistic kids get divorced must be sort of true because it feels true to her:
It is perhaps unsurprising that the pressures of parenting special-needs children prove too much for many couples. There is a commonly cited statistic that the divorce rate among the parents of autistic children is 80 percent. (Toucey mentioned it during our talk.) Recent studies have debunked this figure, yet it persists among parents because it feels so true. “Based on my and my friends’ experience, that stat makes complete sense,” asserts journalist Hannah Brown, the mom of a teenage boy with autism and the author of a new novel, If I Could Tell You, about the challenges of parenting autistic children. Of her son’s condition, she says, “I tried to fight it, but it completely took over my life.” Brown recalls that when she and her husband split up, she was initially embarrassed to tell the staff at her son’s school. As it turned out, she chuckles, “they were really good at dealing with it because they deal with it all the time!”
Now, I understand why it might feel good to the mother of an autistic person to read something like this. I hope those mothers also understand why it would be hurtful to an autistic person to read this.
I am very disappointed by the number of parents I respect, who "get it", who participate in media that excludes autistic people. I would like parents to ask, when interviewed for something like this Newsweek article, "Are you talking to autistic people, too? Because if you aren't, I'm sorry, but you cannot use anything from me."
I wish parents who say they care about the voices of autistic people would tell the radio stations that want to bring them in for interviews that they will be happy to participate if autistic people are included, and to refuse to do so if not.
Again, it's important to include a parent perspective. But when that's all we get, autistic people are referred to only as problems and burdens and obstacles:
Part of what makes special-needs parenting so daunting is that the load often does not lighten with time—that golden day when one’s child is more or less self-sufficient never arrives. In fact, many parents report that the school years are by far the easiest. Autism Speaks’s Dawson says she frequently hears the shift out of school described as “falling off a cliff, because so few services are available after you exit high school.” In the wake of high school, she says, about 40 percent of these young adults have no activity outside the home, and the same percentage have no social activity.
This is what's wrong with April.
It too often turns into "be aware of how hard it is to parent an autistic child month."
And people who are seen only as burdens have a hard time getting others to see them as people. Does Dr. Dawson ever stop to think that she is making it harder for the 60% of autistic young adults who are not getting out of the house at all to find places to go when she talks about nothing but how scary they are?