[LMB] Gene cleaning in real life

Beatrice_Otter beatrice_otter at haugensgalleri.com
Fri Nov 10 04:12:41 GMT 2017


On Nov 9, 2017 7:32 PM, Jelbelser <jelbelser at comcast.net> wrote:
>
>
> On Nov 9, 2017, at 7:02 PM, Beatrice_Otter wrote: 
> > I am autistic.  Autism Speaks is the largest and most prominent autistic advocacy group in the United States.  But they are NOTORIOUS for excluding actual autistic people from their policy-making, instead being controlled by a group of parents of autistic children who are incredibly toxic.  As in, in 2013 they made a video about autism in which one of their top people said she fantasized about murdering her autistic daughter, WITH THE AUTISTIC DAUGHTER SITTING RIGHT NEXT TO HER, and they were surprised that people objected.  Because, to them, autism is a HORRIBLE THING THAT STEALS CHILDREN AND DESTROYS FAMILIES and so OF COURSE any parent of an autistic child would fantasize about killing them.  This is why we need research into autism prevention and cure so that no parent will ever have to go through what they do!  (Meanwhile, people who actually ARE autistic were appalled because imagine the kind of hell that girl's life is, with a mother who wants her dead and thinks sh! 
> e should be praised for not murdering her yet.)  Anyway, all the money that Autism Speaks gives to research these days goes into trying to identify the genes that cause autism so that autistic fetuses can be aborted. 
>

Jelbelser said:
> Autism is a spectrum. Severe/profound autism, especially when accompanied by mental retardation, is overwhelmingly difficult to parent. It does destroy families. I completely understand a parent fantasizing about killing such a child. I am completely in favor of all non-coercive efforts to prevent such children from being born.

Beatrice Otter said:
No, it does not destroy families.  There have actually been studies on this.  For example, rates of divorce do not change whether the children are "normal," "mildly autistic," "severely autistic," etc.  Even what you call "severe/profound" autism does not destroy families.  It is challenging.  But there is a factor that is FAR more indicative of the general family happiness than whether or not the child is autistic (of whatever variety), or intellectually disabled, or possessing any other disability (and 70% of autistics have an additional diagnoses, almost half of us have clinical anxiety and lots of us have epilepsy and so on and so forth).  That factor is how the parents handle it and react to it.

You see, for a long time (it's changing now, thank God) the approach advocated by professionals and parents alike was that the underlying reasons for any particular behavior was irrelevant, you were supposed to train them out of it by punishing them for it and rewarding them for doing "normal" things.  In the past, the punishment was things like spraying vinegar in their face or giving them an electric shock; these days, it's a gentler form where you remove anything they might possibly like or enjoy and only let them have any sort of pleasure as a reward for being normal enough.

It looked like this.  Say a child doesn't like wearing blue jeans, for whatever reason.  (Maybe they can't stand the feel of denim on their skin, maybe it's the hard buttons, doesn't matter.)  Force them to wear it anyway.  Having to endure a painful stimuli would then bother the child, and they would probably engage in various "autistic" behaviors as a coping mechanism.  But those behaviors aren't "normal" so you punish the child for them.  And so now they have a painful stimuli, they aren't allowed to use the only coping mechanism they know, AND you're punishing them.  Eventually (and probably sooner rather than later) they get pushed beyond what they can bear, and they have a meltdown.  Then they get punished for having a "temper tantrum."  Lather, rinse, repeat.  It's pretty miserable for everybody involved.  You do get what looks like (in the short term) success, with some behaviors visibly lessened, but at the price of more meltdowns and lower academic ability (because all their attention is focused on enduring the stuff you're putting them through) and a whole bunch of other problems.  However, if you take that same child, figure out what bothers them and let them either avoid it or build strategies for coping with it, and working *with* their capabilities and deficits instead of trying to force them to be normal, all of a sudden things become A WHOLE LOT EASIER.  It's harder in the short term, and it takes more mental effort on the part of the parents, teachers, and any therapists because you have to actually figure out how to work with the kid you have instead of trying to force them to be the kid you wish you were.  But it produces a lot better results, and results in a lot less grief for everybody in both the short term and long term.

Figuring out how to parent an autistic child can be very difficult.  I know this.  I don't have any children but my baby brother is sixteen years younger than I am, and he is also autistic.  Autism runs in families.  My Dad is autistic, and so are a number of other relatives.  My middle brother isn't autistic but has some other learning disability that's never been diagnosed.  None of us were diagnosed until my baby brother was about three, and not speaking yet, and the family didn't think anything of it but some family friends pushed, and so we got him evaluated, and he was diagnosed as "low functioning" autistic with a low IQ.  And then we read through the diagnostic criteria and so many things about our family made SO MUCH MORE SENSE.  And ever since then, I've been fascinated by autism and spent a lot of time reading about the subject and talking with other autistic people.  I remember how hard some things were with my baby brother even with a family who was used to autism, and I've talked with people who were even harder to deal with for one reason or another.

(As it turned out, they were wrong about his IQ; intelligence in autistics is far harder to quantify than it is in neurotypical people, because our brains are wired so differently.  You will hear some people say autistics tend to be more intelligent than allistics, and some people say that we tend to be less intelligent.  I've never seen a study on it that had enough scientific rigor in its definitions and methodology to be willing to trust its results; my personal experience is that we run the same gamut of intelligence as allistics do, from low to high, with about the same rates, but that our brains function enough differently from other peoples' that it's hard to compare.  An allistic will see something we our brains happen to do better than an allistic's would, and go "wow you're a genius!" and ten minutes later a different allistic will see something our brains happen to do worse than an allistic and go either "wow, you are so retarded!" or "wow, you can do [this other completely unrelated thing] so obviously you're just purposefully not doing it to be a jerk!")

(Neurotypicals are people whose brains are perfectly "normal"--no developmental disorders, no psychological disorders, no emotional disorders, no cognitive defects.  Allistics are people who are not autistic.  All neurotypicals are allistic; not all allistics are neurotypical.)

I also remember how HORRIFYINGLY bad and destructive some of the advice the professionals gave my parents was.  Not all of it.  But a lot.  And then there was the stuff that was just useless, although it might have been helpful for other autistics.  Fortunately, these days, the advice is getting better and with the internet there are a lot of helpful people who are actually autistic who can give great advice about what would have been effective for them as a child.  (Places to start, if you or any of your friends/family need something: Blogger Cynthia Kim, especially her book *Nerdy, Shy, and Socially Inappropriate,* Amythest Schaber, who runs an Ask An Autistic service on several platforms including Youtube, and We Are Like Your Child, a collaborative blog run by a group of autistic people)

The problem is, that the world in general only wants to hear what autistics have to say when we fit their stereotypes and what they want to hear.  This is doubly true for some types of parents of autistic children.  Not all parents, but a large and vocal group of them.  As long as we agree with their ideas and approach to parenting, they can't lavish enough praise on us.  How wonderful and inspirational we are for breathing!  But if we disagree with them in any way, things change in a heartbeat.  Then we're horrible people who don't know ANYTHING about their child who is NOTHING like us, and we're just trying to hurt them and we should just kill ourselves for being such a horrible person!  (I've never been told to kill myself, but some of my friends have in this situation.)  But, like, dude.  Okay, autism is a spectrum, and there is a WIDE variety of different types.  My autism may not express itself exactly the same way your child does.  But I guarantee you, if you are not allistic, my brain is still more like your child's brain than yours is.  We struggle with the same underlying neurological quirks that cause the different symptoms.  I may have completely different sensory sensitivities, for example, but I've got 35 years of experience in dealing with them.  Also, of course I'm different from your child!  Are you the same now as you were at age 5?  At age 10?  At age 15?  No?  You've grown and changed since then?  Funny coincidence, so have I!  We don't grow up the same as neurotypical people do, but we *do* grow up.  If being different means nobody could ever understand or teach, no adult would ever be able to understand or teach any child.  And then we're back to point one.

I need to point out here that there are quite a lot of autistic parents who make money off of portraying themselves as martyrs.  They treat their children like this, and then tell horror stories of the worst things their child does (when half of it is their own fault, and not their child's), and then they put it online and say "see what a wonderful parent I am, and what I have to put up with, and how horrible autism is!"  And they get both sympathy and ad revenue for doing it.  And their blog posts, book deals, and interviews do a LOT to shape public perception of autism and autistics.  But please remember that even if they truly are doing their best and not doing anything counterproductive, they are showing a highly slanted view of their child and their home life.  It's no more realistic than the mommy bloggers who only show beautiful perfect pictures of their child being an angel.

Also I should point out that parents murdering their autistic children is not in any way, shape, or form theoretical.  It happens regularly multiple times a year in the United States; the Autistic Self-Advocacy Network keeps track.  Here's the general pattern: a parent doesn't like that their child is autistic.  They treat that child terribly, and often refuse help and what services are available for various reasons.  (Sometimes it's because they don't want to admit their child is autistic; sometimes it's because service providers would figure out pretty quickly how badly they're abusing their child.  There are a couple of other reasons, but those are the most common.)  Then, eventually, they kill their kid.  And the media falls all over themselves to talk about how *hard* it was for them to have such a child, never mind how hard it was for their child to have such a parent.  It doesn't matter how many other people who knew the child in life point out that the child was not the monster the filicidal parent and media portray; it doesn't even matter if the other parent tries to counter the narrative of impossible child and desperate, dedicated parent pushed to the brink by The Demon Autism.  The filicidal parent, the courts, and the media all consider "but the victim was autistic" a decent defence against a murder charge, and Autism Speaks will then spend huge amounts of time and money talking about how this is why autism is so horrible and you should totally give them more money.  Not because a child has been murdered, but because *the parent was "pushed" to such "desperate" straits*.  (Oh, and they may also throw in a plug for more/better services, which, yes, we DO need more/better services, but when the parent turned down the services that were available, more services is not going to solve the problem that resulted in a dead kid.  Because the problem is a world which says it's okay to kill an autistic child if they're inconvenient enough or have a low enough IQ.)  I've seen this so many times.  it's INFURIATING.

And you misunderstand what "autistic spectrum" means.  It does not mean a straight line from "normal" to "really weird/deeply affected."  It's more of a color wheel, with a number of different categories, each of which any particular autistic can experience differently.  How autistic someone looks on the surface at any given moment (even as a small child) is very rarely any kind of an indication of how deeply any particular trait affects them.  Things like the environment around them, their stress level, and the support and understanding they can rely on can make a RADICAL difference even in a very short period of time.  There's a really good visual explanation of it here: http://theoraah.tumblr.com/post/142300214156/understanding-the-spectrum

Beatrice Otter


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