The Study I'm Afraid to do

I'm planning on being a psychologist when I'm older. And not only will I counsel people, I will do studies as well, because I want to understand neurological diversity better.
But there's one study I want to do, out of my own interest, but I'm afraid to do it because of how people will use what I learn from it. I won't even describe the study except to people I trust, for fear someone else will use my idea for exactly the purpose I fear.
That's because this study would help identify autism genes, and not only that, it would help predict an autistic person's traits based on their genes. I want to know the genetics of autism because it interests me, the same reason I'd like to know the genetics of giftedness, the same reason I read up on the genetics of various developmental disabilities like Williams Syndrome. They interest me.
But I know that's not why other people want to know the genetics of autism. Other people want autism prevention. They want to be able to test a fetus or embryo to know if xe will grow up like me, so that they can prevent the birth of autistics. Just like they prevent the birth of Down Syndrome kids and other chromosomally different kids.
I know scientists aren't supposed to worry about how their results will be used, but in my opinion that's irresponsible. That attitude causes a lot of harm. And many scientists do think about how their results will be used. They think things like "if we identify the genes for autism, we can provide genetic counseling and prenatal screening for parents of autistics." Scientists regularly think these things.
I'm fighting for the rights of disabled people, and I hope someday no one will want to prevent the birth of people like me, or of people with Down Syndrome or any other condition. If I live to see that, maybe then I'll do my study. But for now I won't do it.
Ettina

Preventing Disabilities or Preventing Disabled People

Amanda Baggs recently posted an entry on her blog(which, by the way, has moved) about the attitude that not preventing the birth of a disabled child when you have the opportunity to do so is irresponsible. That got me thinking about a related thing I've noticed.
I belong to a listserv called Chromosome8. Most of the members (not including myself) have or had a family member with a chromosome 8 anomaly. Back in February, a woman posted to say that five years ago she'd aborted her son with an 8p duplication, and was wondering if she'd made the right choice. One woman whose daughter has an inverted 8p duplication with a deletion* said that she loved her daughter dearly because her daughter is "such a beautiful, happy child" yet if she could do it over, knowing her child's condition before birth (which she didn't, which is why this girl is alive now) she would've aborted her because this girl can't walk, talk, use the toilet or eat solids and may never do any of those things.
My first assumption was that this woman must not truly love her child, because she would be willing to prevent this girl's birth. Certainly, if the girl is aware her mother feels this way, that's how she would likely interpret it. But my mother said that woman probably does love her daughter, and is not thinking logically about the issue of aborting her daughter.
I pondered that, and here's my best theory about what she might be thinking: she is viewing her daughter's disabilities as separate from her daughter while her "good points" are part of her, and loves her daughter for those "good points" while hating the disabilities. And for some reason views aborting her daughter as something that would prevent her daughter's disabilities, but not something that would prevent her daughter, as if had she aborted this girl and had another child, the other child would have had all the parts of her daughter she loves, but not the disabilities.
I'm autistic. I have a allistic(non-autistic) brother. My parents love both of us very much. The aspects they love about me are some autism-related things as well as things unrelated to autism (I know this because when I'm feeling bad about myself my parents often try to help me by listing what they love about me). The aspects they love about my brother are some allism-related things as well as some things unrelated to allism. If they had screened before birth and found out I was autistic and aborted me, they would obviously not have gotten a child with the autistic aspects they love.
But even if they viewed the autistic parts of my personality as entirely bad, they still would not have gotten a child with all the aspects they liked about me. My brother is a wonderful person, but he is not me. He is not even what I'd be if I was not autistic. He is himself, and I am myself, and we're both unique. And we're both loved for who we are, not only in aspects we're alike in, but also aspects we're different in. For example, they don't think it's better or worse to have a child who can carry their grandchildren in her womb as opposed to one who must get someone else to carry their grandchildren. They love both of us with our different reproductive strategies, viweing both as important. They view our neurological differences the same way.
But anyway, my point is that aborting a disabled child is not equivalent to giving a PKU kid a low phenylalanine diet (which I'm not sure how I feel about). In aborting a child, you are preventing that child, not just certain characteristics of that child, such as a disability.
Ettina

* her chromosomes are like this:
normal 8
A
B
C
D
*
E
F
G
H
I
J
duplicated and deleted 8
C
B
B
C
D
*
E
F
G
H
I
J

Lessons for the Real World

I'm reading a book called Choosing Home: Deciding to Homeschool with Asperger's Syndrome. It's written by the mother of an aspie who started being homeschooled for grade 7, and intended mainly for other parents facing a similar choice.
In her chapter on socialization, she says:

"Critics of home education say that school provides a view of reality that will toughen the youngster up for life in a harsh world. Homeschooling parents question whether or not school actually is a lesson in reality. It may prove to be a lesson in unreality and cause poor behavior as a result."

I don't think the issue is that simple. To a certain extent, school is a lesson in reality, but not a good lesson. It magnifies harmful tendencies that are prevalent throughout society, such as conformism.
I often find myself using sexual abuse as an analogy. Our society has image of the sexualization of women all over. Just look at a magazine rack in an ordinary convenience store and see just how many images of scantily clad women are there.
A person could argue that sexual abuse, magnifying this tendency for a child, teaches the child about sexualization in general. It certainly does provide a lesson in that. But what is the lesson? That you are powerless to defend yourself from sexual exploitation, and must simply learn to tolerate it.
Back to school. It provides a lesson in the view that different is bad just as sexual abuse provides a lesson in the view that women are just sexual objects. It magnifies a harmful tendency in our society until it emotionally overwhelms the person. And the child is powerless to stop it. All they can do is learn coping strategies to numb themselves to the pain of it.
As a result, a sexually abused child often grows up to be less effective at fighting back against sexual exploitation, and a bullied child often grows up to be less effective at fighting back against insults aimed at those who don't fit in.
But a bullied child or abused child could learn a different lesson. They could learn that they can do something to stop it. I learnt that from my parents, because when they first suspected my cousin was abusing me, they sent him to another home. I also l;earnt that I can leave a bad school situation because my parents pulled me out of three of them. Unfortunately, I also seem to have learnt that chances are, wherever I go next will still be bad.
In that book, she also says:

"We tell our children to walk away from bad situations, but then we let them wallow in an environment where they expend too much valuable time and energy just learning to tolerate the intolerable. I feel that by making the decision to homeschool my AS son, I have taught him an important life lesson. If you are in a bad situation, do something about it. You don't have to tolerate mediocrity and unkindness."

I agree. It's better that a kid never be exposed to such things, but if they already have, the best thing is to teach them that they don't have to put up with it. For an abused child, this means that as soon as you learn of the abuse, you should take measures to stop it - especially if they took the risk of telling you about it. For a bullied child, don't stick with a bad school setting once it's obviously not working.