I’m glad they got it reasonably accurate this time, and even finally included stuff from the interview with my case manager, although I still wish I’d seen more of the other people from the AutCom conference, since I know several were interviewed, and I’d participated in all of this mainly hoping that they would show me as only one of several people. (I’m hoping they’ll use some more of that later.) On the other hand, I’m glad they used more of that than before and emphasized that I’m not all that unique among the wider autistic community. And I’m slightly baffled as to why there were at least two parts of it that they repeated twice within the same hour, and one answer that seemed pasted in from a different question (I am pretty sure when asked why I made the In My Language video, I talked about Ashley X).
And also, my relationship with my friends is just that, we’re friends, I’m not some kind of one-way inspiration machine and I don’t aspire to be (that last link is very tongue-in-cheek).
If you’re new to the blog, some stuff that ought to be read first, although CNN did a more thorough job than before in covering some of that stuff:
Disclaimer on Assumptions, Let’s Play Assumption Ping-Pong, and Please Don’t Take Me As Typical are all things you might want to read if I end up not being quite who you would expect me to be, or if you expect my life, body language, etc. to correspond directly to every single other person who has the same set of labels I do. I try to cover everything that could surprise people, but I do forget stuff.
My comment policy (such as it is) is covered in some combination of the bottom of the About page and Gossip-Free Zone. The rest can be summarized by “Try not to be a jerk” (I’ll tend to delete that stuff, although if I have the time and there’s other substantive content I might just edit them). Be aware that my spam filters often mess up and throw things in the spam bin that are actually legitimate comments (this happens most often to Andrea Shettle for some reason, to the point where I search all spam for her name before deleting it). So you might want to keep a copy of your comment just in case. Things that are clearly intended to be private, I save. Things that aren’t but contain private information, I edit.
Assorted things I’ve meant to say, from the other side of the usual time barrier is something I wrote after the first CNN broadcast last year. And By the way… was my response to their amusing choice in music. Again. And Again. And Again. deals more indirectly with the process of being asked questions (including by CNN) that I had trouble answering. The awful prison of autism dealt with both self-consciousness during interviews, and the tendency for people to analyze everything an autistic person does in terms of autism. Editing described some things that didn’t make it into last year’s CNN broadcast (some of which did make it into this recent one). Post in anticipation of tonight’s deluge was an older post much like this one. Some quick corrections and clarifications was in response to the recent Wired article.
Hopefully that’s enough links to clarify various things.
Ballastexistenz 
Hi Amanda, I watched the CNN show last night, I have a question¨: they mentioned you even went to college at age 14 and that you used LSD at some point. As far as I can remember, they said your autism appeared (or did it get worse?) along that time. Is it maybe possible that taking LSD had somehow caused or aggravated your autism?
Greetings to your kitty cats and your doggie.
I actually discuss that in a few different pages on this site, but the short answer is no. CNN worded it pretty clumsily so it sounded ambiguous, but what actually happened, was I’d been slowly having more trouble since the age of around 11 or 12, been to a neurologist at the age of 13 about it, and being pushed too far too fast in school was the last straw. The cause-and-effect scenario you present is actually exactly backwards: I’d have never done drugs if I hadn’t been constantly told I was on them because of my increasing difficulties with doing various things. They actually helped me function through a bad period, but when I decided to stop taking them, I went straight back to the crashed and confused autistic teen I was before I’d ever done them.
So no, there were actually very few long-term effects of that, and I was even evaluated by doctors for that and found not to have any. If you’re looking for long-term effects, look at the neuroleptics I was given for several years.
You can’t actually be diagnosed with autism if you were not always autistic (the diagnosis says you have to have shown various signs by the age of 3), so the idea of drugs (legal or illegal) causing autism in someone who is non-autistic doesn’t work. Somewhere between about 1 in 3 and 1 in 6 autistic people experience an increase in difficulties during adolescence, and a little over 1 in 10 autistic people experience the slow losses in motor and speech skills that I did.
I do know of an autistic woman (Mary Newport) who experienced both a pre-existing loss of skills in adolescence and apparently-permanent damage from the drugs she did as a result of her confusion about that. But in my case (as in the case of most teens who experiment, if they don’t become long-term users of certain drugs) there was no permanent harm done.
And, as I’ve pointed out many times, you can’t get autism from LSD. :-) I used to know someone who had genuine LSD-induced brain damage. It made her have some perceptual experiences that were unusual, but different from the way mine are unusual. She was unable to drive as a result. Other than that, she was exactly like a totally “normal” person, and she in general showed absolutely no sign of anything even slightly looking like autism.
Really, if you read the other pages on this site that go into it, you’ll find all this information already, including descriptions by other autistic people of going through roughly the same thing in adolescence.
I linked to the pages and posts from this post for a reason: I’m dealing with a nasty bug right now, I’m not equipped to answer every question that could possibly come up, and I would like people to be able to find the appropriate information without having to wear me out asking me. There’s plenty of posts, pages, and comments on this site that deal with the topic of drug use among autistic people or other neurologically atypical people, including me and other people who post here.
Hi Amanda,
I’ve been hanging around this bog for awhile now.I found you and your blog first through the wired article. But this is my fist comment.
Thanks for telling us about the CNN thing, I’m watching it online right now.
I guess I just wanted to say hi, have a good day. I’ll be around on here.
Peace
Jessie4
“I’m not some kind of one-way inspiration machine and I don’t aspire to be (that last link is very tongue-in-cheek).”
Oh goodness … why not?
Although I think sometimes people miss some of the people you have the potential to inspire.
It’s not just “my kid in non-verbal and Amanda Baggs gives me the hope my kid will be able to communicate some day.”
You also have to throw in the, “If Amanda Baggs is unable to negotiate SO many things without assistance and still produce information of IMPORT, then, by gum, I’m guessing there must be at least a little hope for someone who’s primary ‘handicap’ is merely not being able to make it through business meetings without melting down.”
In reply to Axinar.
“Oh goodness … why not?”
RTFL. :-P (Read The… uh… ‘Fine’… Links. And I wouldn’t say it to you that way if I didn’t know you and your thick skin already.) Two perfectly good links on disability inspiration.
amanda – you are a very courageous and beautiful young lady…may God bless you and keep you…keep it up! i love your sense of humour and i look forward to reading much more!
janet
Hm, two guesses why your spam filter keeps catching my comments:
1. Maybe because I keep adding hyperlinks to so many of mine? I know at my own blog site, things seem to be automatically set up to snag comments with a certain number of hyperlinks as automatically suspect and, at minimum, in need of screening.
2. My other guess is, your spam filter just doesn’t like me ;-)
Or, in other words, if it isn’t #1, then I haven’t a clue :-P
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.
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”.
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.
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.
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.
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.
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!
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.
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.
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.