Aspies For Freedom

I emailed about this once before, but I think it is important.

I think we should lay off the "it's genetic, therefore not a disease" talk. Cancer has a genetic component, and diabetes (which I also have) is genetic. In fact, gene research will yield a cure for diabetes before I die of old age. The same cannot currently be said about me getting help to live with Asperger's Syndrome. It only fuels the curebies' fire to say it is genetic, because there are genetic disorders out there that cost society billions of dollars in health subsidies and lost wages that a single alteration in the DNA could fix instantly. We play into their hands this way.

For my part, I do not believe that Asperger's Syndrome is even genetic at all. If you search through my family, you will find at least a dozen diabetics, half a dozen sufferers or former sufferers of cancer, but absolutely no Aspies. In fact, I have found no evidence, nor has anyone I have asked (and I ask a lot of questions), that Asperger's Syndrome runs in families, which is the hallmark of most genetic diseases/disorders.

No, I was not born prematurely.

The people I have asked have all been Aspies, none of whom have any Aspie relatives. Granted, I have only asked about thirty, but when I ask thirty from three different countries and get a strike rate of zero, it does make me wonder.

As I said, a lot of disorders that are "all in the genes" are horrible disorders that cost society and their victims horrible amounts. Do we really want to associate ourselves with them?

AspieGirl's right--the genetics are complex.  And even people with the same genetic inheritance (e.g. identical twins) won't necessarily exhibit the same behavioral traits or disease susceptibilities.  There are epigenetic and environmental influences on development.  Even for diseases with relatively obvious genetic predispositions, there is so-called "incomplete penetrance" -- i.e., not everyone with the same "predisposing genes" actually gets the disease.

[Note:  I'm splitting what should be one post into pieces because for some reason I can't send it all at once---sigh.]

It might be worth sorting out a few ideas that might be being muddled together.

1.  Cause--Is autism genetic or acquired?

In saying that autism is innate, as opposed to acquired, one could in principle argue that autism is solely genetic in etiology. However, a likelier possibility is that autism is caused by some combination of genetic predispositions and the specific microenvironment of the developing brain prior to birth.  If it were "just genetics" then monozygotic twins should both be autistic if one of them is.  Lots of human characteristics are caused by genetics-with-environment combos--e.g., intelligence.

But whether autism is acquired or genetic, if you are autistic, then that is a fact about yourself that has implications for how your life is lived, for better or for worse.

2.  Syndrome--a set of characteristics by which a phenotype is recognized--the term being usually associated with a disease.  But in theory there could be such a thing as "artistic ability syndrome" or "entrepeneur" syndrome.  The cause of the syndrome could be innate or acquired or some combination.  Calling autism a syndrome makes it seem like a disease.

3.   Desire to cure or not--Whether the phenotype called a “syndrome” is considered to be a bad thing or a good thing would be dependent on cultural values. For example, if the phenotype causes pain and suffering to people, and the cultural value is that pain and suffering is to be avoided or ameliorated if possible, then the desire will be to treat or cure the syndrome.  Hence the intensive focus on juvenile diabetes research--to alleviate suffering.

4.   Cultural values towards any given syndrome can change--attitudes changed for left-handedness and are in the process of changing for homosexuality. With respect to autism, I’m thinking that much of the controversy surrounding the drive for a cure has to do with the issue of how much pain and suffering autism causes and for whom, on the one hand, and the positive value that autistics contribute to society as well as the value of individual autonomy on the other.  The pro-cure people will argue that autistics and their families would be happier and society better off if there were a cure or effective treatment or effective prevention strategy for autism.  The against-cure people will argue that much of the current day pain-and-suffering experienced by autistics and their families would be alleviated if society creatively adapted in ways that helped neurodifferent people live meaningful and productive lives.

I’m still muddling my way thinking through all this. What I’ve said here doesn’t address peoples’ concerns about prenatal testing or eugenics against autistics--both of which could be possible if genetic causes were to be adequately defined.

Others on this forum ARE concerned about the implications of a clear definition of "autism genes" or, more precisely, a set of sequence variations in a defined set of genes that, taken together, give a high probability of conducing to the autistic phenotype.  Would there be pressure to do prenatal testing or abortions or selecting against such embryos in in vitro fertilization--?? Or, might attitudes toward autism and societal support for autistics be sufficiently positive by the time the identification of such genes occurred that most parents would welcome an autistic child?

I think there might be analogies here with the deaf community but I don't know enough about this to say.

I tried to make the point above that the cure issue is logically independent of the genetic cause issue.  Whether genetic or acquired, some will argue in favor of a need to cure autism and others will argue against.  The specific nature of the cure, if one is to be had, would vary, depending on the cause(s) of autism.

So, if your point is that autistics will change peoples' perceptions if we  present ourselves as healthy valuable individuals, then I agree with it. Where was it said? The best revenge is to live well (or something like that).  

In this regard, it is my opinion that the anger you are expressing in your posts will not help either your cause or that of other autistics.

I-M, this conversation is making me reflect on how, in some ways, I'm glad that "Asperger's Syndrome" didn't exist as a concept when I was young. Had they had a "label" my parents might have been more understanding and supportive, but possibly not. I don't know whether your parents are purposefully malicious, unintentionally damaging, or simply clueless. Whatever--you're in pain and in need of healing, and I hope that it comes to you someway, somehow.

I do know that I don't want to be "just an Aspie." I'm okay with being an aspie scientist, an aspie philosopher, an aspie friend, whatever. My identity is complex!! And that's a GOOD THING.  I don't want to have an aspie nation--if separatism is what you're in favor of, count me out. If having all aspies live to the best of our potential as individuals is what you're advocating, then count me in.

I disagree--granted, if I had a clearer clue as to what my potential was, I'd do a better job of living up to it, but I don't see how being isolationist would benefit me.  Maybe we differ in that I don't see "normies" as being out to get me. And, to be honest, I only know one other for-sure aspie in real life (and a handful of probables), none of whom I would want to be around for a long and extended period of time, although I like them in small doses.

If you knew you has AS when you were 15, how would your life have been different?

I would have actually received some support in education over those 4 years and not dropped out because I knew the doctors were lying to me (yep I know odd of an Aspie to spot a deception). I would have received treatment that would have helped a lot with the co-morbid disorders. Add to the fact that it's highly unethical to withold a diagnosis (unless say it's terminal and you think the patient's crazy and would kill themselves).

So it would have made a lot of difference...

:grin: Oh add to that when I finally did get back into education (after the law being changed) so they couldn't either:-

a) refuse your application on disability grounds or

b) decide they didn't want you as a student because of your AS

they then went and flipping broke the law regarding both a) and b) (and a number of others)!.  :evil:

Flipping NTs. They wouldn't know the rulebook if they were knocked over the head with it. They just have their own agenda and seem to abuse their authority far more than an AC would under the same circumstance. But then I doubt I'll ever be able to understand the lines along which NTs think (or don't as the case may be).

Anyway, if you want anger about a situation and understanding then yes I'm here.

Amy, do you know of any studies where the monozygotic twins were raised in different environments, e.g., both adopted out to different families, and under these circumstances, both twins are autistic?  If there are many cases like this, it would be really good evidence for a genetic etiology.

Okay folks,
Below are links I found on the monozygotic twin and genetic cause issue.
http://ajp.psychiatryonline.org/cgi/cont.../161/3/539
http://ajp.psychiatryonline.org/cgi/cont...t/142/1/74

The links below are to longer articles that I need to read, rather than skim.

http://www.actionbioscience.org/genomic/dougherty.html
http://www.protectingourhealth.org/newsc...review.htm

Edit: I've now read them--they provide some helpful background on the issues and if you're not tuned into the whole mercury/vaccine debate, the "protecting your health" article gives a decent summary, I think.  People on this forum will take issue with some of the claims made--the most outrageous one being that "autistics don't marry and have children."  

The point is made in one of the articles that a redefinition of autism as a spectrum (i.e. to include a whole array of pervasive developmental disorders) means that there could be multiple sets of genetic causes that might only be figure-outable by stratifying autistics into subgroups with similar features (or something like that).