Sunday, December 2, 2007

Billy the Kid - an Aspergian movie you should see

I’d like to tell you about a new movie – Billy the Kid. It’s a documentary about the life of Billy, a teenage misfit in a small town in Maine. They don’t say anything about his condition in the film, but to me it was obvious that Billy is a young Aspergian, one with many similarities to me as a kid.

The first time I watched it, I didn’t enjoy Billy the Kid, but upon reflection, the reasons I didn’t enjoy it are reasons many of you (parents and educators) should watch this film. There’s a lot of real stuff here that people who raise Aspergians should see and ponder.

Before I begin, though, I’ll describe a few key differences between Billy and me, at age fifteen:

1 I was better looking. He has more zits.

2 He wears a bicycle helmet. I never did.

3 He cut his hair with a rat tail. I wore mine long.

4 He wears Truck Stops of America shirts. I liked sports cars, not big trucks.


OK, having spelled out the differences, let’s move on to the similarities. I don’t like films that cause me to relive bad experiences from my own past. And this one did.

First of all, he’s a total dork. Even now, a day later, I still can’t decide who was the bigger dork in high school – me or him? The realization that I can’t decide, and the degree of dorkiness shown – it’s very troubling. I sure wish someone had been there to tell me how I looked. Billy’s mother tried to do that at many points in the film, and I think she helped and guided him a lot. Seeing her, I wish I’d had more of that parenting.

Billy has a good mom. And he might have better kids in his school, but I doubt it. I just suspect they minded their manners because they didn’t want the humiliation of being caught on camera doing something reprehensible.

Do you all remember how teachers told me I’d end up as a serial killer or sociopath?

{If answer = NO, go buy Look Me in the Eye, read, continue}
{If answer = YES, continue}

Well, he must feel the same way, because he checked out Serial Killers in History and the librarian called his mother. Yes. Watchful librarians. I remember them well. Billy is wary and nervous all the time, as he should be. Seeing him, I remembered the degree to which I was always on guard, and the level of relaxation I exhibit today is in comparison truly remarkable.

Like me, he wants to understand people like that, to decide if he’s one, and if he’s not, how to identify and avoid such people. Recognizing, of course, that most of the world is out to get us, too. And that is the reason he’s a karate expert. I too learned self defense at an early age. He and I were the same . . . wanting to be peaceful, but prepared to resist attackers at any moment.

Billy’s got the same love of music I had back then, and the same lack of talent playing a guitar. Why the lack of talent? He’s probably not coordinated enough (like me.) Watching him walk, he’s got the same clumsy gait as me and other Aspergians I’ve observed.

One thing I did not see in the movie was his special talents. What are they? Either Billy hid them, or he has not yet found them. He’d better get going . . . he’s fifteen, the age I was when I was developing my own talents. That made me wonder . . . would any of you, watching a film of me at fifteen, foresee anything I subsequently accomplished? I doubt it. I wonder what Billy will do.

Billy and I shared a few other things . . . we both had drunk and violent fathers which left us with personal aversions to violence and drugs, and a resolve to do better with our own kids. Hopefully, Billy will follow my own example in that regard, as he gets older.

There’s only one point in the movie when Billy looks truly relaxed and happy. That’s when he’s standing in snow covered woods, talking to the camera, and shaking snow off a dead pine tree. That moment of relaxation lasts perhaps ten seconds. Every other moment of this film he’s anxious and on guard. It’s sad, but it’s real. I lived that too.

You can just see it in Billy. Wanting to fit in, and have fun. Wanting to have friends. But always on guard because and attack could come from any quarter, at any moment. For me, having lived it, it’s a very real film. No one could have made this up.

Some of you may squirm too, reading my description. Why should you go see this movie? I’ll tell you. Billy the Kid is a real first person account what it’s like to be an Aspergian teenager. Just as my book is described as a groundbreaking work, this is a groundbreaking movie. Parents and teachers – it will worry you, and make you squirm. But that’s what it’s really like for us. And you parents with more autistic kids . . . you may watch it and say, “I wish my son had it that good.” But let me assure you, having lived it: It does not generally feel good, being an Aspergian teenager.

That is why I go out to deliver my message of tolerance and understanding today.

The director – Jennifer Venditti - and crew deserve praise for making this movie. I was particularly impressed with the way they were able to blend into the background and film ordinary life without people "hamming it up." I saw a few instances of people playing for the film but mostly they (the camera operators) were just there, unobtrusive. That's commendable. Billy and his mom . . . they deserve to get a little older and get better lives. A good husband for the mom, and a good life for Billy. Will it happen? Look in again in 20 years.

I wonder what the broader public will say about this movie. Will they understand Billy?

Look here for more info and locations: http://www.billythekiddocumentary.com/

37 comments:

Jill Elaine Hughes said...

This is slightly off-topic, but last night the History Channel also had a documentary on the original Billy The Kid (i.e., the Old West outlaw) that hypothesized, among other things, that the historic Billy The Kid was a woman dressed as a man, who also worked as a prostitute.

I'll have to check out the other Billy The Kid documentary. Is it available on DVD?

Chiemi Karasawa said...

As the producer of BILLY THE KID, along with Jennifer Venditti, I am delighted with your observations and feel really proud that we have your validation as we are HUGE fans of your book! I just want to point out, that Billy and his mother have come to several festivals with the film and now actually enjoy seeing the movie again and again and feeling the audience's reactions - whether it be empathy, humor etc. His mother especially recognizes that Billy is funny character sometimes, Aspergian or not. And I think MANY people also relate to being the underdog who still has dreams and grand hopes for the future. Hopefully, with more people like you in our midst, we can make those things a reality by enlightening those around us.

BRAVO and thanks, John!

-Chiemi Karasawa
(P.S. We open in NYC Dec.5th!)
www.billythekiddocumentary.com

Chiemi Karasawa said...
This comment has been removed by the author.
kevathens said...

Nice! I'm starting to get the sense, too, that I live my life very 'on guard.' I've kind of worked through a bunch of the autism stuff, but I think I still have some anger issues.

I'm sure it's partially anger that got you to write Look Me in the Eye, John. I'm personally really miffed at psychologists and how completely off the mark they've been with a lot of people. The more I walk around the more ridonculous it is how many unidentified Aspergians there are - including (shocker!) in my own family.

So, like I said, those anger issues..

ORION said...

This is what it takes IMHO- Seeing PEOPLE not the syndrome.
Very cool of you to mention this John - I'm going to see this.

Polly Kahl said...

If you suspected someone was Aspergian, would you tell them? John, I got the impression from your book that you resented being told, initially (because of, I assume, all of your negative experiences with mental health professionals.)

I'm sure your book does make some people squirm, but it provides one of the same positive functions that books about abuse do for a lot of abuse survivors. It's sometimes hard for the un-abused to understand why anyone would want to read books detailing painful experiences, but books by abuse survivors provide a lot of validation for those who can relate to them. It's incredibly reassuring to hear that you're not alone, you're not crazy, and in fact, you're okay, and even excellent, under those circumstances.

Kim Stagliano said...

Hi, John. Made it home safely in the snow, hope you did too!

I'm sure the film (which I also blogged, but haven't seen yet, hint, hint Chiemi!) will enrage the people who think autism in all its forms should be portrayed as a wonderful, joyful natural state. The same ones who ridiculed the Autism Every Day documentary for showing the reality of life with and for lower functioning children like my own. No one has ever decided to end hunger in Africa by viewing photos of well nourished children on the veldt, you must look at the ugly reality -- and no one will take seriously the need to respect, include and help people on the spectrum unless their reality is exposed. I'd say Billy, his Mom and the movie creators are quite brave. Of course, I haven't seen it yet (hint, hint Chiemi!)

Would you say this movie shows a pretty common reality?

niknak said...

I would like to see the movie for the same reason I loved your book: it helped me to understand the mind and behavior of my 8 year old son. If Billy is like you were, then Billy might be a preview of what my son is to be since my son is so much like you were at his age. Only my son is cuter than you and Billy. Kidding, you were a cute little guy!

Trying to arrange for a sitter so that I can come see you either in Sudbury or at Barnes and Noble in Framingham. Would love to have my book signed too!

Thank you John for your great blog. I have been following along mostly silently for a month. Very interesting stuff to think about, good stuff.

Samwick said...
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John Elder Robison said...

Samwick, every Aspergian has special talents. It's inherent in the condition. Asperger's, being an imbalance of intelligence in the different parts of the brain, gives you a brain with deficiencies in some spots and excess in others.

The weak spots - social skills and others - are usually obvious.

The "smart spots" may not be as obvious, and it's the job of parents and teachers to find them and bring them out.

John Elder Robison said...

Niknak - you'd do better to come in the evening if you have a choice as I'll have more time then. You might also write Trish from the Western MA Asperger group trishaane@comcast.net to see if anyone else is driving out

Samwick said...
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John Elder Robison said...

Samwick, I do not mean genius. I mean, he's got to be better at certain things. And for Aspergians, those things may be narrowly defined. For example, he may be nothing special at mechanical engineering in general, but he may have wonderful insight into hydraulic drives.

And as to the "look" . . . you may have to wait for my next book for that, as it's more a chapter than a blog essay. But it's coming, soomer than you think.

Samwick said...
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Sustenance Scout said...

Stopped by via a mention on Jen P's blog, John. Thanks so much for discussing this documentary. I'm looking forward to viewing it and highlighting it on my little corner of the blogosphere. I'm confident it and your book will continue to open a lot of eyes and hearts to the day-to-day realities of life on the spectrum. K.

Holly Kennedy said...

John, this is fascinating.
I'm off to see if/when it will be shown up here in Canada. I can't find any info on it yet, but I'm sure I will.

Great post.

Church Lady said...

Thanks for posting about this and including a link about the documentary. It's definitely something I want to see, and I hope it becomes widely available.

I had similar thoughts as Samwick. I think that would make an interesting topic for discussion at some point.

sex scenes at starbucks said...

tInteresting. I'll have to look for it.

ps I was a dork in HS, too.

pps WOOF!

The Anti-Wife said...

Thanks for the recommendation. I'll look forward to seeing it.

debra said...

I'm looking froward to seeing this, John. thanks for writing about it.

John J said...

Michael Arnold explains what asperger's syndrome is very succinctly in his own words and what it's like to be bullied in school in a docu style DVD recently launched Oct 2007 in Dublin, Ireland. The production cost was grant aided by Daisy, a foundation of HRH THE DUTCHESS OF YORK, LADY Sarah Ferguson

Samwick said...
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Kanani said...

They may or may not understand Billy. Or they might, but how to respond to him, how they treat him in everyday life is another story.

Suz said...

Hi John--I haven't seen this movie, but I definitely want to now. I just finished your book and, having a 6 year old who just last year was diagnosed with Asperger's, sometimes I find myself just carrying it around like it's an old friend. I found a lot of comfort in your book, thank you so much for finding the courage to write it. My son also has a very 'light' version of Asperger's, but obviously any time your child is conceived as being even 'slightly not normal', you know they will be targets for ridicule. All I can say is that I think he's amazing and I can't wait to see what he will do. I can honestly say that in him I don't see Asperger's as a 'disability' at all. I can only hope that a book like yours can help other people come to that same conclusion.

Camille said...

23 Short Films about Glen Gould was a movie about a man with Asperger's/HFA and it came out in 1993.

youtube clip

To me it's a totally right on portrayal of Asperger's/HFA, even though the psych world didn't know about Asperger's when Gould was still alive, and the makers of the movie probably weren't thinking "autism" when they made it. It's the only movie I've ever seen that made me feel like I had quite a bit in common with a character.

"Mozart and the Whale" was ok, but not nearly as good as the "32 short films" movie. Mozart and the Whale has some good portrayals of people across the spectrum, though, it's not just about Asperger's.

I also liked the clips I watched of Billy the KId. I haven't seen the whole thing.


autismdiva.org

Camille said...

scagliano wrote:

"I'm sure the film (which I also blogged, but haven't seen yet, hint, hint Chiemi!) will enrage the people who think autism in all its forms should be portrayed as a wonderful, joyful natural state."

Interestingly the billythekid blog links to my blog, yeah, that's because I'm so outraged over the video.

How dare Kim Stagliano use the video that is all about the victimization of an Asperger's kids to insult me and the other people she regularly reviles and abuses as if we did not have the very same kind of teen years described by John Elder Robison and in this film?

Look who else the billythekid blog links to from that blog all the people scagliano has gone out of her way to insult over and over again.

ASPERGER/ASD OUTREACH LINKS

ASCEND (THE ASPERGER SYNDROME ALLIANCE FOR GREATER PHILADELPHIA)
ASPEN
ASPERGER FOUNDATION INTERNATIONAL
ASPERGER SQUARE EIGHT BLOG
ASPIE DAD
ASPIE FRIEND FINDER - ONLINE GROUP FOR ASPIE TEENS AND TWEENS
ASPIE LIFE
ASPIES - A PLACE FOR SELF-ADVOCACY
ASPIES FOR FREEDOM
AUTISM DIVA BLOG
AUTISM NETWORK INTERNATIONAL
AUTISTIC DUCK
DRAMAUTISM
GRASP
MAAP SERVICES FOR AUTISM AND ASPERGER SPECTRUM
MARC'S AUTISM-ASPERGER’S SYNDROME BLOG
NEURODIVERSITY.COM
NEW YORK CENTER FOR AUTISM
O.A.S.I.S. (ONLINE ASPERGER SYNDROME INFORMATION AND SUPPORT)
OUR ASPERGERS TEENAGE BOY
POSAUTIVE
RSVP BLOG - STORIES FROM THE SPECTRUM
THE AUTISM ACCEPTANCE PROJECT
TONY ATWOOD
WRONG PLANET

Mr. Robison,

You write about how much you had in common with Billy, but I will put it to you that your little friend kim has very much in common with the bullies who make the lives of autistic people living nightmares. She hates and abuses Autistic adults who don't want to be cured themselves and who love their "low functioning" autistic children and don't want to force a cure on them. That's right, the Asperger's folks Kim despises so thoroughly have kids like Kim's.

Samwick said...
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Heraldblog said...

If you suspected someone was a bully, Samwick, would you tell her?

Nobody's playing the victim card. AD is just calling out a bully. Is Kim S., the journalist manqué, wise enough to listen? Or is she just a legend in her own mind?

Stay tuned.

John Elder Robison said...

Camille, I hope you recognize that I celebrate our diversity. At all my public events, I speak about the need to develop our Aspergian gifts and differences, because it's the spark from those gifts that moves our world forward.

Kim has come to several events with me, and I have never once heard her express hostility to my views.

You say, "she hates and abuses autistic adults who don't want to be cured" Where is that thought once expressed toward me? Isn't that what I am? An autistic adult who doesn't want to be cured?

I understand that you don't like her, and perhaps you're making a judgement from some knowledge I don't have . . . I don't know. I know that in my case, I have not observed the negative things you say.

In any case, I would appreciate if if you'd recognize that my blog is a place to discuss the issues rasied in my posts, and your most recent comment veers rather far from that. Have you read my book? If so, you know I take a strong stand in favor of tolerating our differences and I don't encourage attacking others in this manner, at least not through a third party like me.

Billy the Kid is also a move about "getting by while different" and understanding. No one is trying to force a cure on Billy. He's muddling along, just like I did, making his way in life.

Are you near New York? If so, you should come to the showing I'll introduce, on December 17 at the IFC. We can talk about these issues in person at the q&a following the movie.

Camille said...

Mr. Robison,

Kim Stagliano has gone out of her way to bait me personally(she described what she was doing on a Yahoo! group) because I advocate for the acceptance and accommodation-not just of the "shiny aspies," the Asperger's folks who can get jobs and gain accolades from the general public, but also the gritty, not pretty, "low functiioning autistics". Kim mocks people on the Huffingtonpost blog who want respect for their low functioning autistic kids, the ones she says have the "dog poop, ear wax and vomit" flavored autism. Read what she has written on huffingtonpost, she has a couple that are aimed like a bullet right into the hearts of advocates of neurodiversity. She says in one of them, "this ought to get their panties in a knot" or words to that effect.

Kim will love you so long as you agree that the low functioning kids might be vaccine poisoned and in need of chelation and a dozen other quack treatments that she espouses.

Of COURSE, she isn't going to say this to you. She is courting your favor (and Ralph Savarese's, and Susan Senator's) because you have a book and she wants to get her book (formerly titled, "Autism is Murder") published. I'm sorry, but I really think you need to consider if that might be the case.

She's made you a special case. I think you need to realize that she promotes autism spectrum symptoms that are inherited like her girls' (she has three girls, all autistic, one is unvaccinated) as vaccine damage and toxicity. Read what they write on "age of autism" rescuepost where she is an "editor". Kim doesn't even approve comments of anyone who questions the "autism epidemic" rhetoric or the "vaccine damage" garbage. She and the other editors don't allow any autistics who question the need for a cure to post their feelings there. I know two people who questioned a post there and had their comments approved and then later removed with no admission that they'd been removed.

Kim is participating in a huge lie, the autism epidemic caused by vaccines lie. Even if she's not personally selling the dangerous cures, she's promoting them by saying her girls were destroyed by vaccines and whatever else.

It seems that you haven't spent the time to look into the reasons behind the vaccine blame thing. It seems that you haven't taken the time to look into how we know there hasn't been an epidemic, and as a corollary that there are nearly a million people just like you, autistic adults in the US who are undiagnosed and misdiagnosed.

I picked up your book and read parts of it in a bookstore. I can do that again to read more, but I don't feel like it would be that useful to me to buy it. I have a middle functioning, mentally disabled autistic child adult child at home. I live the life you live, as far as Asperger's goes. You can't tell me what it's like any more than I can tell you what it's like to be on the "high functioning" end of the autism spectrum. I see you promote acceptance of Aspergian's, but I promote acceptance of even the "dog vomit flavored" low functioning ones like my own kid.

I am not going to write a book. I don't have anything to promote here, except respect for "low functioning" autistics. We don't need to talk about them as toxic wrecks in need of a cure. We need to talk about them as wonderful people who work hard to accommodate the NTs around them, and who deserve our respect.

If you want to know why I went a little medieval on your blog here, first of all, I have Asperger's, second you have to get a picture of how abusive Kim has been to me and the other "autism-hub bloggers" regularly because we want respect for ourselves and our kids and not to be called toxic waste and fools for not chelating ourselves and our kids and for not agreeing that there has been an epidemic. Some of it she does under a pseudonym on a certain bulletin board. A lot of it she does on the EoHarm Yahoo! group and on huffingtonpost, her own blog and on "age of autism blog".

I have written "volumes" on my blog about the "autism epidemic" and it's roots and how it is a lie.
here . You can search "autism diva epidemic" or "autism hidden horde" and learn a lot about the epidemic nonsense. If you would take a stand against the autism epidemic rhetoric you could to your fellow "Aspergian" adults a lot of good because people would realize that there are so many of us out here.
I hope you will not position yourself as some kind of rare being. I'm one like you, one of the bullied and abused and socially clueless adults who didn't get a diagnosis until middle age. There are hundreds of thousands more of us and we were not made this way by toxins.

John Elder Robison said...

Camille, you have written much to think about; I'll try and respond to you paragraph by paragraph.

I certainly understand that you feel Kim has done you wrong, but this isn't her blog, it's mine, and I want to focus on what I say and do.

I know Kim (and a bunch of other moms) believe many kids are being made autistic by vaccine. Do I think I am a victim of vaccine? No, I do not. I have no opinion of vaccine's effect on others. I do not feel it affected me.

I believe I am the way I am because of my parent's genes. I was born this way. I know that people are born naturally with greater and lesser autistic impairments than me. Like you, I don't think there is any huge rise in the incidence of people "born like we are."

I do think it's more in the news and I also think Aspergians like me are getting diagnosed in bigger numbers, but we were here all along.

OK, what about vaccine?

I am not a chemist, and I don't have the knowledge to take a stand on vaccine. But I do think we have more and more chemicals in our environment, and I believe some of them are damaging children's brains. Maybe it's vaccine; maybe it's the mercury reacting with something else. I don't know, but I would not be surprised to hear that there's an epidemic of chemically induced brain damage.

Is that autism? Is that the same as people born like me but with more impairment?

The possibility of chemical poisioning is troubling to me. I've read the accounts of diet . . how dietary changes made huges differences in the way autistic kids act. I try those things myself, though, and I see no difference.

That suggests to me that there may be more than one condition here. Obviously, the treatment for lead or mercury poisioning could be a lifesaver for a poisioned kid, but it could be toxic for someone like me.

So I'm open to multiple causes, and multiple treatment courses, and also simply acceptance.

You say, "I see you promote acceptance of Aspergian's, but I promote acceptance of even the "dog vomit flavored" low functioning ones like my own kid." Well, I too promote acceptanc eof all people, autistic and otherwise.

Camille, one advantage I have over most people in this arena is that I see lots of folks now. I have had MANY autistic people come to my events and express agreement with my views vis-a-vis love, acceptance and tolerance. In contrast, I have never once had an autistic person come to me and say, "But I want to be cured!"

When I talk about "the cure" in the context of my own life, it's strictly a spiritual and mental thing. Medication is not for me.

When I read about chelation, and the controversy about it, I am not sure what to say. We should be able to agree that chelation can help with chemical poisioning. But I don't have that, so I would not benefit.

That said, I would certainly not want to see a poisioned person denied a potentially life saving treatment. Would you? Perhaps the tolerance we ask for should be extended to those who seek or advocate alternate treatments for folks with different issues.

There certainly is a big and emergent community of previously undiagnosed "borderline" Aspergians out there.

Do those (us) Aspergians mate and produce autistic children, concentrating our traits? Research and the evidence of your own life (by your statement) says yes.

Is there also a community of toxin damaged children, too? There probably is.

I think we have to recognize that "autism" may encompass many different conditions, some of which we are just beginning to understand.

Camille said...

Mr. Robison,

I appreciate the time you have taken to think about my comments and respond.

As you know an autistic person with a perseveration will spend hour after hour, day after day, ... year after year studying a topic until they have a level of mastery of the topic. My special interests include psychology, especially the biology of psychology/neuropsychology and the structure and function of the brain. Another of my perseverations is autistic culture and the right of disabled people to be treated with respect (even by their own parents, even if the parents are frustrated and angry at the disability). Another is autism epidemiology and the lie of the "autism epidemic."

If you had a few hours I could give you an overview of how the "autism caused by toxins" and "autism caused by vaccines" and "autism epidemic" ideas came about. I have traced them thoroughly back to their roots. I will tell you plainly, as far as autism being caused by toxins, there is no there there. With the exception of a few known teratogens (I can name them for you if you want, they include drugs and viruses) that can make a normal embryo into an embryo with different brain wiring there are NO chemicals or toxins or germs or anything that can take a normal 18 month old and change it into an autistic 18 month old.

It does not matter what the parents say because they have been fed a myth and they regurgitate the myth. Just as in the past autism was widely believed (even by mothers) to be caused by cold mothers with a secret death with toward their babies and this turned out to be wrong, so this vaccine and toxicity hystera is wrong. It's not just a little wrong is 100% wrong.

It's all wrong. There are on the one hand bald faced liars who spread this stuff around in order to sell cures for the "toxicity caused autism" and there are psychotic people who fear that the gov't is trying to poison everyone with injections (no, really they are truly delusional and fear that the gov't is trying to poison them and inject them with tracking devices) and there are a lot of people who don't have the scientific background to judge the claims so they suck them down whole and turn and repeat them to others, and some are encouraged to tell tales of their babies being destroyed by vaccines because there is a pot of gold at the end of that rainbow.

As I said, if you had time I could lay out reams of documentation of these points. I have more than 700 mostly lengthy blog entries that cover most of the points. I suggest you read them. All of them.
:-)

It's unfortunate that people like yourself who have no background in science to use in order to judge what is right and what is a lie in this manufactured "controversy" feel free to weigh in on it nonetheless, but that's not your fault. I don't think you are deliberately trying to harm me and my child by saying that "maybe some autism is caused by toxicity". There is zero evidence that there has been an increase in autism over any period of time. There is little in the way of evidence to use to judge anything about autism prevalence. Let me add that I sit on the "autism epidemic" task force at the UC Davis MIND Institute, I know autism epidemiology much better than the average person does. But there is a lot of evidence that there are a lot of people like you and me and my ex-husband and lots of my relatives out there.

No epidemic-- no reason to look for some new cause of autism. No epidemic--no reason to blame vaccines. No epidemic--every reason to look for all of the undiagnosed and misdiagnosed autistics out there. Many have had the schizophrenic dx and many may have been locked up because they looked like they might be serial killers, etc.

I have a bachelors degree from 2006 from UC Davis in psychology, pschobiology emphasis. I know this stuff. You don't have to take my word for it, I can show you step by step how it is.

I suggest you ask the autistics who come up to you at your book signings to tell you if they have the "vomit, ear wax or dog poop flavored" autism as Kim Stagliano says her girls have, or if they have the "raspberry cream and root beer" flavored autism that she says people like me have.

Go ahead, see how well that goes over. Actually, no don't do that as you might find that you offend a lot of autistic people. This is exactly Kim Stagliano's intention, to offend autistic people. It's a game she plays, like pulling the wings off of flies, she enjoys tormenting "the ND".

I would not have brought this argument to your blog, but Kim brought it here with her nasty comment about those who would be enraged over the Billy the Kid movie, those who deny that autism and Asperger's is ever difficult, those with the imaginary "raspberry cream" flavored autism.

You can find Kim's blog about vomit/dog poop/ear wax flavored autism by googling, "stagliano vomit" it's the number 1 result right now. This is the one she claimed was directed at me (on a TACA Yahoo! Group). Kim is not beloved among autistic adult bloggers, you might ask yourself why that is.

John Elder Robison said...

Camille, I have to retire for the night but I want to leave you with a comment and a question.

Comment: I don't refer to people's autism as "dog poop" or anything because I think those descriptions are hurtful. I do, in my talks, describe people as being on a spectrum where some folks are more impaired and some less, but that's about it.

Question: You say poisioning does not cause autism. OK. I don't have the medical/chemical knowledge to question/agree/disagree with that. I have to admit, it's a leap or assumption on my part.

We're exposed to more chemicals than ever > some of those chemicals cause damage > some damage is brain damage > brain damaged (poisioned) people are diagnosed as autistic.

That still seems sensible as a chain of reasoning. What's wrong with it?

Recognizing that there are more chemicals in our environment every day, lead, mercury, and other metals, what are the effects of that poisioning?

I thought some of those compounds produced brain damage?

Camille said...

There are a bunch of brains of deceased autistic people of various ages in brain banks. By looking at this brain tissue, and by looking at the function and structure of live autistic people (thank goodness they aren't sacrificing us yet to get at our brains) a lot is really known about autistic brains. It's not just speculation, it's hard science.

On the other hand a lot is known about brain damage from chemicals.

Brain damage from chemicals is fairly random. It's like, OK, here's a normal kid, let's smash him in the head with a baseball bat and make 'brain damage'... anyone want to predict EXACTLY which kinds of brain damage he'll get?

Autism is not brain damage. Let me say it again. Autism is not brain damage. It's a neurodevelopmental difference or a neurodevelopmental disability, but the difference arises from the way the brain is wired from long before birth. The tracks of development are visible in the structure of the brain. You can see the history of the brain's development in the way it is now. There are cells that only get to be in certain places if they get there at certain times. It's not random. You can't come along later and poison a brain and say that it will now act the same as the brain that was wired up that way from 20 days post conception.

I can explain it if you like how it is that a brain can produce what looks like a normal baby at 18 months and how that brain can be pre-set like on a timer to start making the baby act autistic at 18 months.

There are chains of events in development that can allow for normal development for a time and then it's like a switch is flipped, and the kid acts different. You might compare it to puberty (though this is not the same set of chemicals that cause puberty), the baby isn't born with a beard and a deep voice, but a switch is flipped at age 10 or so and the baby no longer is a baby (to simplify it).

No toxins are needed to flip these switches.

People want desperately to intervene so that no babies are autistic, no babies have a regression, none are born with Asperger's etc, and by pushing the "toxic" buttons they (as if by MAGIC) shake loose all kinds of funding for research into these horrifying toxins(!!!!!).

In some ways this world is more toxic than before, but in the US there were more unregulated toxins going around back in the 1800's and if you think all natural means toxin free you are wrong.

The most deadly toxins come from mother nature. And rubella, is an all natural virus that causes autism if the mom is exposed early in her pregnancy. It's all kinds of all natural to get prenatal rubella syndrome, and these fetuses and embryos die these all natural deaths from rubella infections. And the ones that survive get these all natural cases of deafness and blindness (and autism).

The topic of chemicals is VERY complex, it's not like "Oh wow we are so toxic now but we weren't in the past." In the 1850's people dosed themselves with MASSIVE amounts of mercury in the form of calomel. (google, "“One night with Venus, a lifetime with mercury.”) And I'd bet you and your brother have some stories to tell about your parents and merthiolate (thimerosal tincture) and mercurochrome (merbromine tincture). We all were exposed to random amounts of mercury as kids and no it does not cause autism. Mercury poisoning is not anything like autism. It's a lie that it is. Parents who are afraid to admit that they are sort of autistic themselves, or that they have deficient genes or who really want to cash in on having a disabled kid are willing to look at anything but their genes as the cause of autism.

Again, if you want to know about a dozen well-known "causes" of autism, I can point you to reading materials. None of them involve "toxins" after the baby is born.

You can poison a kid and give him brain damage, the kid will be brain damaged but not autistic. Autism is not generic "retardation" or "cerebral palsy" or "seizures", that's what you get with random "brain damage".

I am not brain damaged, thank you, very much. :-) Neither is my ASD kid. (I have an NT kid, too. Same father)
I have a developmental disability called Asperger's syndrome.
My ASD kid has PDD,nos.

John Elder Robison said...

Camille, there's a lot to think about in your response.

You are right, of course, that there were more unregulated chemicals in American society in years past. As a kid I chewed lead fishing sinkers and yes, we were treated with those mercury pastes down in Georgia. I remember rolling balls of mercury in our hands in science class.

And we had aesbestos and pcbs and ddt and all the others.

I agree with you, none of them made ME autistic. I was always the way I am.

I get your point that brain damage is random, where autism is a specific set of differences.

I've read about diseases like rubella, and I agree they were more common in years past.

All your points make sense. You make me realize that I have a need to learn more.

I'll try to explain my concern about unrecognized toxins today:

Humans evolved eating plants and animals over thousands of years. We ate a diverse group of foods. That does not happen anymore. Corn monoculture has dominated our intake of plant matter. We eat genetically engineered animals, treated with antibiotics. We've replaced natural sugars with a 10,000% dose of high fructose corn syrup, which we can't process efficiently. I don't understand all the ramifications of that but it's alarming.

Would I go so far as to suggest it causes autism? No. I don't know what it causes, other than fat and generally unhealthy Americans.

What are your thoughts on diets, and how certain parents report dramatic changes in their children from dietary changes?

More than anything else, this dialogue makes me realize that I should stick with the original message of my book, which is something I know:

1) I was born the way I am

2) I have made the best of it, and my "cure" is based upon self reflection and insight leading to both acceptance of who I am and some changes in how I present myself to the world.

3) I want the world at large to accept me as I am, and I want to make people aware that phrases I heard as a child, like "retard" are hurtful and should not be used. Indeed, to me, they are in the same category as "wop" and "nigger." I want more people to understand that.

4) I want to make the world a better place for people like me, and people who are like me but more impaired and therefore less able to advocate for themselves.

As I suggested earlier, I have had many autistic people agree with the above. I have yet to meet an autistic person who disagreees.

Camille said...

"What are your thoughts on diets, and how certain parents report dramatic changes in their children from dietary changes?"

I agree that a much better diet could be had by most people if junk wasn't so available. Another problem is that when you and I were little, even though we were socially clueless (well, speaking for myself) it was more or less safe for us at age 8 to take off on a bicycle or walk for hours and not get hurt. Either the world is more dangerous or there is an impression that it is and kids stay put more these days. There's a whole huge problem with kids (including ASD kids) sitting and playing video games and not exercising.

There is good reason to look at various therapies to improve the lives of autistic kids. The problem with the claims about diet is that there is no reason to think that a change of diet will make a huge difference for the vast majority of autistic kids, that is make a real biochemical difference in them enough to change the way their brains work. But the claims for the GFCF diet have been (entirely made up out of thin air) that the guts of autistics are more "leaky" and so they let through opium like molecules into the blood from the gut which make the kid act stoned. Autism is then merely being stoned. Take away the wheat and dairy and your kid is no longer stoned and no longer autistic.

Oh wow, how tidy, only it doesn't work that way at all.

What might be happening is that autistic kids are under a great deal of stress and this is messing with their guts.

Then you have some autistic kids, like some typical kids who are lactose intolerant or actually have an allergy to wheat and dairy.

These kids may not be able to communicate the pain in their gut or might not feel it in a normal way. Their getting treated for belly problems is delayed and gets worse.

Developmentally delayed kids tend to have problems with constipation. Constipated kids get backed up with poop and then the only thing the body can do is start making diarrhea which runs over the poop to get out (sorry for the graphic description).

Several studies have shown that the main problem with autistic kids is constipation. But the parents who are crying foul over vaccines and toxins like to describe the "burning, caustic diarrhea..." "poools of diarrhea on our expensive persian rugs...." "oh the diarrhea that we deal with...." Well, for one thing the kid could have lactose intolerance which causes diarrhea and bloating, or the kid could have this overflow diarrhea and you don't need to blame chemicals or big pharma for it.

There's a reason we have science, it can rule out or rule in the common reasons for a problem in a rational way. Some of the parents who report all the gut problems have an agenda... blame vaccines. Period. Vaccines are just the cause of all our ills from murder to baldness, literally.

The other thing is, say you have a kid who improves on a diet, well you start feeding the kid two things at the same time. You feed positive messages of "now you will feel better and act more normally" and also you feed the new food.

If the parent is infused with hope the child feels it. If mom was told that the kid is a total waste and belongs in an institution and then is told that the kid can be normal with a diet change (and yes, they are told this) then mom suddenly feels positive things for the child and will see good things that were there all along, and the kid will feel good because his mom doesn't look at him with despair in her eyes or talk to him like he's a colossal loss.

Double blind studies of the GFCF diet have so far not shown any benefit. The opiod excess theory is baseless. The "measles punch holes in their guts" theory is totally 100% bogus.

There's on huge double blind placebo controlled study on GFCF about to be released. It could show a benefit for some autistic kids, but I don't think it will.

I don't tell parents to never try the diet. I tell parents to listen to rational doctors and if they want to try the diet who can stop them, realistically. If the kid feels better. Fine. But people should probably try to add back the removed foods later to see if they really were the problem. Some people are convinced that the diet is doing wonders but later find that it's not necessary to continue (or that all along grandma was feeding Billy chocolate chip cookies at her house and they didn't know it).

The diet is extremely hard to follow for some people, impossible to follow for some people, and apparently easy to follow for some people. If you have a family that can not switch to gfcf then why tell them that it's their own fault if their kid stays autistic when they could have saved him if they hadn't been so lazy and uncaring.

The guilt messages are real and brutal. If you don't try every stinking flaming expensive "alternative" therapy for your kid then you are a bad parent. That is a common message from the biomed parents.

I think focusing on education and a loving acceptance of the kid is far more important that looking to change the kid through diet (with the exception of kids who genuinely have allergies to food or are lactose intolerant). Also, stress is tremendous in autistic kids and stress is a health destroyer. It's more important to try to deal with the stressors like bullying than to look for chemicals in the environment to remove. But with all the focus on finding the right pill or potion the effect of stress and bullying gets pushed aside.

Thanks for letting me perseverate on your blog, Mr. Robison. :-)

Ted said...

I can't wait to see this film - I'll probably have to wait for the DVD release as there hasn't been any screenings in the Great White North to my knowledge.

Cheers,

Ted