Wednesday, May 02, 2007

Autistic Sense of Humor

I am diagnosed autistic. My Dad isn't diagnosed, but he's probably on the spectrum as well.

I was reading a book and found an interesting fact - smell is the most poorly understood sense. I asked my Dad: "Guess what the most poorly understood sense is?"
He replied: "ESP."
"ESP isn't real!"
"See what I mean? But one of these days I'll show them all, and they won't call me a crazy aardvark anymore!"
"Well, if you wouldn't eat ants, we wouldn't call you a crazy aardvark!" (At which point my Dad burst out laughing.)
During all this my Mom, who is a gifted allistic (non-autistic) person, was just trying to mentally keep up with this descent into weirdness.

And they say autistics don't have a sense of humor! I will analyze jokes rather than laugh at them, but it's more a different kind of humor than a lack of humor.

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Tuesday, December 05, 2006

The Family I Want To Have

I tried to send this to Celebrating Autistic Parents, but it bounced. So I'm posting it here for now.

I love children, and have always planned on having children. Recently I realized I don't have to get married and have sex to have children, which is great since I'm not interested in sex. I'd like to either co-parent with someone else who wants sex and no children, or be a single parent. I'd like one child like me. I'm planning to go to a sperm bank and find the most autistic-like donor I can. If I'm lucky, I'll get an undiagnosed aspie, otherwise a BAP donor. Either way, the chance of the resulting child being autistic would be high.
Recently I heard on the radio about a lesbian couple having a child. When they were at the sperm bank, they got to listen to a tape of the sperm donor talking about his chosen topic. If I go to a sperm bank like that, I'll look for someone who picked an unusual topic and has odd tone of voice. I also heard about a sperm bank that only accepts high IQ donors. If that sperm bank gives data on subtest scores as well as overall IQ, I could pick someone who either has high verbal-low performance with low Comprehension and Arithmetic, or someone with high Block Design and low Comprehension.
I'm also planning to adopt a baby with Down Syndrome. There are many adoptive parents who specifically ask for a Down Syndrome child. If I can adopt a child with a rare developmental delay syndrome, that would be great too. I'd love to be a parent of a child with Angelman Syndrome or cri du chat syndrome. I will delight in my children's uniqueness. Even NTs are unique, and I'll love an NT child just as much as a disabled or gifted one. I'll raise all my children to value themselves and value diversity, and to be advocates against discrimination. My main method of teaching them this will be example.
But I worry about how good of a parent I'll be. Will I starve my children because of my tendency to forget meals? Will I be snappy at my children when overwhelmed, and hurt their feelings just like I hurt my brother's? Will my history of sexual abuse make it hard for me to cope with changing a little boy's diaper, the way it upset me to help a disabled boy get his pants on after swimming in the volunteering program I'm involved in?
I also worry about how society will react. Will a doctor call social services, or threaten to, in order to make me put my autistic child on medication or in ABA? Will I be hated for wanting to have a child like me? Will people treat my kids badly for being different, for having a parent who's different? If I have a kid who needs heart surgery or a respirator or something, will I be pressured to let my kid die? Will I be able to cope, and keep my kids safe and well despite discrimination?
When I think about it, I wonder how many NT parents-to-be worry the same way. Does a black person planning to have children worry about how they'll help their kids deal with racism? I suppose many of them think of how their parents helped them. If I think of my parents, they did a lot to help me. They fought with the school system for me. My mom got so angry on my behalf, she kicked a hole in the wall of our house once. My dad, who may be undiagnosed autistic, was once told that he should abuse me so that being sent home from school would be more of a punishment. He was rightfully outraged by that, and replied that they should make school less of a punishment so I'd want to stay there. They eventually homeschooled me starting in grade 7.
But they made some well-meaning mistakes. They took in my cousins, not knowing the danger they posed to me. They kept fighting with the school too long, keeping me in a bad situation because they didn't know their options. There was also minor stuff such as pressuring me to eat beets when the taste literally made me gag, and insisting that I finish all of a food I've tasted, even if I decided I don't like it. Since they found out about autism, they've listened to me more about my sensory sensitivities.
I think I can avoid making the same mistakes. But what mistakes will I make? How will they affect my child? Parenting is tough, but when you add a discriminatory society, ready to tear apart your children's self-esteem (including my NT child if I have one, because being related to someone who's different is discriminated against too), the consequences of well-meaning mistakes get more serious. There isn't the cushion of a supporting society, instead you have to fight society to raise your children well. And that's harder.
I think, I hope, my children will be better off for having an autistic parent. They'll learn firsthand that disabled people are real people and special as they are. The disabled ones will have a model of how to live as a self-respecting disabled person. If I have an NT child, they'll learn that they are not 'perfectly normal', just normal. But it will be a tricky job. Managing my needs and my children's needs in a society not designed for us, while fighting to keep society's attitudes from wounding my family and myself, will not be easy. But if I succeed, the result will be wonderful.

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Friday, August 18, 2006

Opinion Shifts and Social Barriers

I read an article by the younger brother of a man, Chad, who has isodicentric chromosome 15. It's no longer available on the internet, but I have a printout. Towards the end he says that despite how wonderful Chad is and how much of that is because he's disabled, he'd never wish Chad's condition on another person.
This reminds me of my opinion on PKU. As I learnt more about untreated PKU, I realized just how valuable these people are. But still I didn't think people should feed PKU babies phenylalanine. I have since asked myself why, and now I am 'pro-choice' on the matter. I want people to be able to choose freely whether to give their PKU baby phenylalanine, instead of the automatic and societally enforced choice being 'no'.
While volunteering with autistic kids, I met a number of parents who seemed to instinctively view their child(ren) as fundamentally different and valuable in a unique way, while still saying that autistic kids should be cured and not thinking of it as destroying who their children were.
It seems to me that oftentimes, people who, through no choice of their own, ended up with a disabled family member reach some degree of acceptance (which is necessary for them to ever be happy again) but they stop at the point where fundamental assumptions would be challenged. They accept that their relative with an incurable disability is valuable and that the disability has benefits and isn't all bad, but don't challenge the idea that disabled people should be prevented.
The medical literature says that parents of disabled people have 'chronic sorrow', so that while they can reach some degree of acceptance of the disability, they are never able to completely move on because their child is a living reminder of their grief. Birthdays, seeing a normal child that reminds them of how their child might have been, all sorts of things open up the mourning again. It's like a wound that closes over but never heals.
However, I doubt the anti-cure parents of autistics, such as Kathleen Seidel, feel 'chronic sorrow' about their children being autistic. And I know for a fact that many Deaf people with Deaf children don't feel any grief at all about their children being deaf - in fact some mourn having a hearing child. It seems to me that 'chronic sorrow' only occurs if you have not completely accepted the disability, but simply found a way to live with something you still consider a bad thing. If you let go completely of your longing for a normal child, or never have that longing in the first place, you will not have chronic sorrow. Chronic sorrow occurs when you are living a situation that society's assumptions considers intolerable and you have found a way to cope while still accepting society's assumptions.
Ettina

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