Comments on: The obligatory post-CNN entry. https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/ Sun, 06 Apr 2008 03:41:04 +0000 hourly 1 http://wordpress.com/ By: Chris https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20823 Sun, 06 Apr 2008 03:41:04 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20823 Dear Amanda,
Hi, how are you? My name is Chris, and I did get an opportunity to view your documentary on CNN. I would like to tell you that I am autistic as well, and I find you to be someone who is very fascinating, and someone who I can relate to, because even though we are both on opposite ends of the spectrum (I have very slight autism), you and I are both very intelligent people. I think that that fact is something that is lost on most people who only choose to see who we are on the outside, rather than who we are on the inside. I have had to go through the same difficulties you have gone through when you were young. I was called names, I was picked on, because I did not want to participate in whatever activities the bullies were participating in. I was called a “retard”. Yet somehow I was able to rise above all of that. I don’t know when the exact moment was that I was diagnosed with autism, but I do know that ever since I found out about it, I have tried my best to understand my situation. I have told some people about it, but it is not necessarily something I feel I should tell people about openly. I don’t know if this is the case, but I would have to assume that most people in my family (particularly my cousins and relatives) do not know about this. I do have my own habits that I can attribute to my autism, but they really don’t bother me or anything like that. I do like to dance and be happy, and no one has ever objected to that. I know you do, and I am sorry that people like doctors have said that that kind of behavior is not normal. You are a very fascinating person, and there is so much I would like to tell you about myself and my autism. I just wish that people like you and me and everyone who is on either side of the spectrum can one day gain acceptance. I take you and accept you just the way you are. Thank you very much for your efforts to educate people about autism, and I hope that those efforts continue.

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By: David Harmon https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20822 Sun, 06 Apr 2008 00:39:10 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20822 Having read a bunch of your prior posts, and commented on a couple of them, I went on to watch a couple of your videos, “Being an Unperson” and “In My Language”, and was very moved by them.

On an NLD support list I occasionally read, some of the people have wondered if NLD is actually part of the autistic spectrum. Now, NLD certainly has enough variations, that some forms might be “wandering in” from other categories of cognitive or learning disability. But just from my own experiences and readings, I was already pretty sure that my own form is in fact on the autistic spectrum, and your videos confirmed that.

A lot of the things you were doing are things that I’ve done at various times, it’s just that for me they aren’t compulsive behaviors, just enjoyable pastimes. I could certainly “connect” with your doing them, and while I couldn’t really “read” your body language, neither did your actions seem “purposeless” to me. Likewise, reading your posts, a lot of the disabilities you describe are similar in “type” to my own, much milder, handicaps. So while I won’t claim to “know what it’s like” to be you (I get enough of that myself from NT’s), I can at least empathize a little bit, and be really impressed at how well you’ve managed to hold onto and rebuild yourself, in spite of all the stuff you’ve had to deal with.

Regarding the issue of “personhood”, I agree that for most people, the word “person” is defined socially, and specifically in terms of communication. When someone declares you an “non-person”, that’s exactly equivalent to saying that they can’t recognize your communication. Of course, that says more about them, than about you!

You are very fortunate in having this alternate means of communication, through computers and the Internet. Here in cyberspace, you can indeed be generally accepted as a person, because here, you can communicate. The ‘Net really is a miracle for all us folks on the spectrum!

PS: I like your newer voice synthesizer much better than the crude one from the older video! I’m hard of hearing, and the new voice is much easier for me to understand.

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By: Philip https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20821 Sat, 05 Apr 2008 13:38:07 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20821 One of the comments on Dr. Gupta’s blog post on ‘Finding Amanda’:

http://pagingdrgupta.blogs.cnn.com/2008/04/02/finding-amanda

is from Grace (April 3rd 2008 3.01am EST). She says she is being treated for a low-grade viral encephalitis by an infectious disease clinic. She describes her speech difficulties. At times she is unable to get words from her mind to her mouth. She finds it easier to type than to talk and has trouble looking people in the eye, especially while talking.

Most of the comments are appreciative and positive.

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By: stephanie https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20820 Fri, 04 Apr 2008 22:59:57 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20820 Even though I can relate to many of the reservations you have above about the CNN show I just want to tell you as someone who stumbled on the CNN show late at night, and someone who has worked in disability rights for a long time, I was really impressed. I was impressed both by you and what you were sharing, and by how much better a job they did than I have seen done on mainstream media in as long as I can remember.
Thank you for bringing a disability rights message to mainstream media. It might not have been perfect, but it was great!

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By: AnneC https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20819 Fri, 04 Apr 2008 19:55:42 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20819 I would think that autistics are less likely to use illegal drugs than non-autistics.

This is probably true, however, if we happen to develop a perseverative/strong interest in something involving illegal drugs as a teen, then we’re probably just as likely as any other teenager to try something. (Especially if everyone already thinks we’re on drugs anyway and accuses us of it constantly.)

“Drug-using” social groups are probably some of the easiest to gain “admission” to of all the different adolescent subcultures out there. Paul Graham actually alludes to this in his essay, “Why Nerds Are Unpopular”. Quoting him there:

Teenage kids, even rebels, don’t like to be alone, so when kids opt out of the system, they tend to do it as a group. At the schools I went to, the focus of rebellion was drug use, specifically marijuana. The kids in this tribe wore black concert t-shirts and were called “freaks.”

Freaks and nerds were allies, and there was a good deal of overlap between them. Freaks were on the whole smarter than other kids, though never studying (or at least never appearing to) was an important tribal value. I was more in the nerd camp, but I was friends with a lot of freaks.

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By: Adi https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20818 Fri, 04 Apr 2008 18:49:32 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20818 It is good to see the media getting things more accurate over time. Thanks for persevering through all the years where they didn’t get it quite right. It takes a lot of energy to not give up on them. Thank you for finding and giving that energy every day: it is echoing around the world.

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By: Philip https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20817 Fri, 04 Apr 2008 17:58:36 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20817 Of course the article I linked to in my previous message could only have meant autistic in the sense used by Bleuler – as a feature of schizophrenia. I find it interesting that it was still being used in that sense in 1951.

LSD cannot possibly cause autism. If it did there would have been an increase in autism diagnoses among the LSD taking hippy/counter culture groups in the mid to late 1960s/early 1970s; and there would be scientific evidence that it does.

The use by autistics of LSD and other street drugs is counter to commonly held ideas and stereotypes about autistics:

That because they have poor social skills/don’t want to socialise, they don’t become part of drug-taking groups.

That autistics have an aversion to trying anything new. They insist on keeping to what is familar.

I don’t know if autistics are more or less likely to be law-abiding than non-autistics, thus making them more or less likely to use illegal drugs.

I would think that autistics are less likely to use illegal drugs than non-autistics.

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By: ballastexistenz https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20816 Fri, 04 Apr 2008 13:54:59 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20816 Philip, that article uses ‘autistic’ the way Bleuler used ‘autistic’, which was not a reference to autism as we know it today, but rather a reference to what we would call ‘psychotic withdrawal’ (as in, loss of reality contact) today rather than ‘autism’ (which we use to refer to a developmental condition). Additionally, it describes a temporary condition, while the person was on LSD at the time, rather than a permanent state. Drawing conclusions about autism (in the developmental sense) from that article would be similar to reading about “mania” when used to mean “overpowering obsession”, and concluding that it was a reference to “mania” when used to mean “a severe mood disorder that’s currently considered by psychiatry to be part of bipolar disorder” — it changes the entire meaning of the sentence.

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By: Philip https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20815 Fri, 04 Apr 2008 10:10:48 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20815 Here is an excerpt from ‘Storming Heaven: LSD and the American Dream’ by Jay Stevens (1987): http://www.psychedelic-library.org/stevens1.htm

A psychiatrist named Max Rinkel reported at the 1951 APA convention in Cincinnati on his work in giving LSD to test subjects. “For every person who became autistic, another turned manic”.

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By: AnneC https://ballastexistenz.wordpress.com/2008/04/03/the-obligatory-post-cnn-entry/#comment-20814 Fri, 04 Apr 2008 05:22:01 +0000 http://ballastexistenz.autistics.org/?p=509#comment-20814 I think it’s probably fairly common for autistic teenagers to get accused of being on drugs — some of my fellow students and a few teachers thought I was on LSD in eighth and ninth grade, when I’d never actually touched the stuff. People seemed to switch from calling me “freak” and “retarded” to accusing me of being “high” right around when I turned 14 or 15, probably due to the changing social environment (seeing as late junior high/early high school is where the whole “drug culture” thing starts coming into play — at least, that is how it looks to me in retrospect).

Also, in high school, the kids who were prone to experimenting with hallucinogens and other substances tended to be some of the only ones who would actually tolerate my presence (and I was naive enough at the time to mistake the toleration of my presence for “being friendly”). So it’s not really that surprising to me that some autistic people might end up getting pulled into that sort of “subculture”.

And while I’m not a chemist or a neurologist, I did have something of a perseveration (strong interest) on the subject of hallucinogens as a young adolescent, and nothing I ever saw indicated that LSD could “cause autism”. As a matter of fact, there are a number of studies (such as this one suggesting it as a possible treatment for otherwise-unresponsive autistic children. A number of studies were performed with reports issued between 1959 and 1974 indicating possible “improvements” in communication and relatedness in autistic children when LSD was administered, though few people know about this today and it obviously didn’t exactly catch on. My guess is that it very well might have if not for the post-1960s/post-Leary backlash against LSD and other substances that had previously enjoyed tremendous popularity and that had been widely studied as potential therapeutic agents.

(Mind you, I don’t personally think this was a good idea — I just figured the history was interesting and worth noting.)

And additionally, while some individuals do seem to experience after-effects from LSD use, nothing I’ve ever come across describes anything that sounds like autism — usually people who have trouble with long-term LSD effects experience issues like depression, panic, persisting hallucination (e.g., “tracers” on moving objects that don’t go away), phobias, mood swings, etc.

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