Monday, November 30, 2009

Stephanie Lynn Keil on Curing Autism

I most definitely want a cure for those most profoundly disabled; I want a cure for my most disabling aspects. Autism has ruined my life, like it has ruined many others: I can't lie.

And no, I don't believe the self-diagnosed have any right to speak for the most profoundly disabled or really for anyone with autism.

Stephanie Lynn Keil, Curing Autism, A Grand Illusion, November 30, 2009

Stephanie Lynn Keil is a person with an autism disorder who speaks honestly and from a very personal, non ideological perspective. Like Jonathan Mitchell and Jake Crosby she wants to be cured of her autism. Like them she will not likely be interviewed by the New Yorker, CBC, Time, Newsweek or CNN which will likely continue to feature the views of anti autism cure proponents. Fortunately the internet provides a means for Stephanie, Jonathan and Jake to advance their positions to counter, to some extent, the dangerous positions of the anti autism cure "self" advocates over whom the mainstream media fawns unrelentingly.

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Stephanie said...

I was reading Casdok's blog "Mother of Shrek" and I always read how she doesn't want to cure her profoundly autistic son. I admire Casdok for being able to be so positive and live a good life despite the problems but I don't believe she would keep her son that way if she had a choice.

If some sort of treatment was available so that the LFA could become like the HFA that I don't know anyone with an LFA child who wouldn't take it, including Casdok, who says she doesn't want a cure for her son.

Helping an LFA get to HFA isn't a "cure" though since the person would still be autistic, which is fine according to me since people with HFA can often function well in society providing they had the appropriate help.

I'm also not going to lie and say that society doesn't need to change when it comes to people with autism (and all disabilities for that matter). We need better supports, better healthcare and society DOES need to be more accommodating to people with HFA/AS.

But, in order for this to happen I feel that we need to work on the bigger problem of the LFA so that they can also be HFA.

farmwifetwo said...

I can't get into Stephanie's blog. Something she has loaded locks down my internet connection.

Also, she has it set so that only a few lines and the header appear on Google reader.

Stephanie... anyway you can fix it???

Stephanie said...


I'm not sure what to do. Have any more information? Are you sure it isn't your internet connection? I think other people are okay.

I'm not sure what I can do but I'll see if I can do anything.

Stephanie said...

Well, I changed one thing that I could think of; it might work better on GoogleReader now.

jonathan said...

I have had trouble with Stephanie's blog on my AOL browser similar to Farmwife's. However, I can read it using another browser (firefox).

farmwifetwo said...

I can read it now in full on the Reader, thank you Stephanie.

I think the mix up comes when people think that those who want a cure want to change their children. My eldest at 2.5yrs was dx'd with non-verbal mild PDD. The Dev Ped pretty much told us he'd amount to zilch and sent us on our way with no help at all. Now at 10, his difficulties tend to lie within the education system. His LD's... biggest one being poor short term memory. That and sometimes some inappropriate speach and comments... or excess anxiety (severe claustrophobia) but usually it's nearly impossible to tell he ever had difficulties.

Technically he's cured.... he will be as "normal" as whatever "normal" is. Nowhere did we do a brain transplant. Nowhere did we change his personality or make him think differently. He was educated. Speech, language, social and behavioural skills. We used SLP's, OT's, Scout Leaders, Library program leaders, tutors, Karate and swimming.. and Mom :)... as our teachers. We will continue to do so until he is an adult.

Would I do the same with the younger... Yes and we have been, and all of a sudden I have conversation bits...

"Sid the science kid has a playdate" - Sid is on TVO kids
"That sounds like fun" - me
"With Gabriella" - end of conversation.

They are not daily, but they are regular in the last month or so. It took about 3mths from starting the Risperdal (0.25/2x's daily). Oh, the scripting, flapping, handwringing etc is all there... but the "fog" is gone...

Would I take the short cut to a cure... Yes... Would I take the long way via education.. Yes... But, I don't think anyone deserves to be forced to live outside of society and at the mercy of the system when they cannot speak for themselves or their own thought patterns if they don't wish to live that way.

If you can articulate that you are "fine"... so be it. But to say it's "ok" and you don't want a cure when you son's fingernails cannot be clipped, he has concussions regularly, and will one day kill himself headbanging (Casdok)... It is cruel IMO to the person who has to live that way.

navywifeandmom said...

"I was reading Casdok's blog "Mother of Shrek" and I always read how she doesn't want to cure her profoundly autistic son. I admire Casdok for being able to be so positive and live a good life despite the problems but I don't believe she would keep her son that way if she had a choice."

I've seen the same blog and I also have trouble believing that she would allow him to remain that way if there was a magic pill available.

I will say that as a mother of a disabled child I have noticed that there is almost this unspoken expectation that you are supposed to blow roses out your ass all the time about how much it has "taught you", otherwise that must mean that you hate your child. I think sometimes people of profoundly disabled children who say that they "wouldn't change their child for anything" might be saying that to avoid being harshly judged by other mothers who want a feelgood story about how life is a trip to Holland and not Italy. People cannot handle honesty.

coc said...

It probably varies around the world, but most civilised societies give enormous authority to parents in making decisions for their children. IMHO, Casdok is more than entitled to make that call for her child, regardless of whether anyone thinks it's a terrible mistake or not. Some parents indoctrinate their children into crazy cults and some parents refuse to vaccinate their children. There's nothing a civilised society can do to guard against what some might regard as gross errors. In this instance of course, the point is moot, since there is no magic pill.

The corrolary of course is that nobody has any right to deny a parent's right to pursue a cure or push for research into same. That's the line the NeuroDiversity crowd crash over time and time again.

Suzanne said...

I'd like to say, to "navywifeandmom" for the record, my acceptance of my (DS & AD) sons has nothing to do with how other parents might judge me. Just look at how harshly you speak of acceptance. You suggest it is a lie.

kristi said...

I think we all make our own choices as far as our kids are concerned. My job is to love my child, just as he is.

Amber DBTD said...

Well said, Kristi.

vmgillen said...

Two things underlying all of everything: our children are seperate people - they are not us, nor are they the embodiment of our expectations. And we, their parents are not going to live forever.

Would a "cure" (don't like that word, actually - what are we curing? can't even get a reasonably coherent definition of autism: the term is so broad as to be useless) allow my son to self-regulate - not run into traffic, not bite himself... etc?

I'd certainly look into it... otherwise, he could end up in a psychotropic stight-jacket, or locked in his residence, unable to go out in the community...