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shulamith
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26 Jul 2009, 12:44 pm

I am doing some research for a play i'm writing about teens on the spectrum and one of them is 'severely' autistic. Does anyone have some input on how a severe autistic- who's also female and around sixteen, preferably- might think or feel, and how she might act as a result?



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26 Jul 2009, 3:29 pm

I'm afraid I can't help much, but have you considered reading books about severe autism? There are books by professionals, parents and in a few rare cases by the person themselves. Temple Grandin is the most famous example of a severe autistic who wrote books. It also depends how severe you are talking, like non-verbal and with a lot of self-injurous behaviours or slightly talking but with very VERY few communicative words? Whatever, I hope you get this book done and good luck with it (I have tried several times to write books but I write one paragraph and get bored...) :cry:


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26 Jul 2009, 3:41 pm

Temple isn't severe. She functions at the AS level and she acts normal and she is a professor at the college in Colorado teaching animal science and she travels around doing speeches on autism. I saw her this Friday there here in Portland.



26 Jul 2009, 3:47 pm

Simon Linch is an example of a severely autistic character. He was in Mercury Rising played by Miko Hughes.


Adam is another example in the episode of House for a severely autistic character. It's called Lines in the Sand.



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26 Jul 2009, 4:47 pm

Spokane_Girl wrote:
Temple isn't severe. She functions at the AS level and she acts normal and she is a professor at the college in Colorado teaching animal science and she travels around doing speeches on autism. I saw her this Friday there here in Portland.
I believe they might have been referring to her as a child, not now as an adult. You are far more likely to see "severe" in a child, since they tend to learn more and more as they grow older.


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26 Jul 2009, 5:41 pm

Temple had always seemed mild because she learned to talk at three and a half and she went to normal classes and she just seemed mild when I read her books when she wrote about her childhood.



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26 Jul 2009, 6:36 pm

shulamith wrote:
I am doing some research for a play i'm writing about teens on the spectrum and one of them is 'severely' autistic. Does anyone have some input on how a severe autistic- who's also female and around sixteen, preferably- might think or feel, and how she might act as a result?
dunno about teens, but you could watch and listen to these for some really good insight into what's going on in the brain and how it feels to be autistic:
http://www.youtube.com/watch?v=9fUi1EYq ... annel_page
http://www.youtube.com/watch?v=_-hW-ZLc ... annel_page
http://www.youtube.com/watch?v=qn70gPukdtY&NR=1

and her amazing stimming video:
http://www.youtube.com/watch?v=JnylM1hI ... annel_page



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26 Jul 2009, 8:17 pm

Spokane_Girl wrote:
Simon Linch is an example of a severely autistic character. He was in Mercury Rising played by Miko Hughes.

I agree with you but think it's funny how Lorna Wing says he has AS.

I also might add that I watched an episode of The Closer and she had to interview a LF teen but on an episode of Without a Trace they were looking for a HF boy, but the HF boy was more low functioning than the teen.
I like to point out mistakes like that.


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26 Jul 2009, 9:00 pm

Spokane_Girl wrote:
Temple had always seemed mild because she learned to talk at three and a half and she went to normal classes and she just seemed mild when I read her books when she wrote about her childhood.
"Mild" because you can understand what she is talking about and it's not completely alien to your own experiences? 'cause in many cases even really, really obvious autism, if present in someone who can communicate in writing, isn't going to come across as all that foreign to someone with AS. Being mainstreamed just because your parents refuse to put you in special ed isn't an indicator of how non-autistic you are so much as an indicator of not doing any major disruptive behavior that would jam up an NT classroom... Anyway, mild/severe/whatever... I've heard her described as everything from "severely autistic as a child" to "high-functioning" and that's probably because the labels aren't precise.

Gaining speech at three and a half is fairly typical for classic autism. About 90% or so of autistics with speech delays will have speech by age nine, in any case, and most of those will gain it before six. (That doesn't stop the other 10% from learning speech later, becoming literate and writing/typing, or becoming proficient in the use of alternative communication from sign to PECS to picture/symbol-based electronic devices.)

So what's your definition of "severe", anyway? Somebody who has trouble with speech? Somebody who doesn't use speech? Somebody who needs help with ADLs? Somebody with autism+developmental delay? There are a lot of different possibilities.

BTW, though, if you want a very disabling form of autism, try Rett syndrome. It's rare and it includes specific neurological traits as well as the autism (kind of the way Down Syndrome is more than just developmental delay). It comes from a specific mutation (the only kind of autism with such a specific known cause) and tends to result in non-verbal individuals, though it doesn't always.


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26 Jul 2009, 9:06 pm

Callista wrote:
Spokane_Girl wrote:
Temple had always seemed mild because she learned to talk at three and a half and she went to normal classes and she just seemed mild when I read her books when she wrote about her childhood.
"Mild" because you can understand what she is talking about and it's not completely alien to your own experiences? 'cause in many cases even really, really obvious autism, if present in someone who can communicate in writing, isn't going to come across as all that foreign to someone with AS. Being mainstreamed just because your parents refuse to put you in special ed isn't an indicator of how non-autistic you are so much as an indicator of not doing any major disruptive behavior that would jam up an NT classroom... Anyway, mild/severe/whatever... I've heard her described as everything from "severely autistic as a child" to "high-functioning" and that's probably because the labels aren't precise.

Gaining speech at three and a half is fairly typical for classic autism. About 90% or so of autistics with speech delays will have speech by age nine, in any case, and most of those will gain it before six. (That doesn't stop the other 10% from learning speech later, becoming literate and writing/typing, or becoming proficient in the use of alternative communication from sign to PECS to picture/symbol-based electronic devices.)

So what's your definition of "severe", anyway? Somebody who has trouble with speech? Somebody who doesn't use speech? Somebody who needs help with ADLs? Somebody with autism+developmental delay? There are a lot of different possibilities.

BTW, though, if you want a very disabling form of autism, try Rett syndrome. It's rare and it includes specific neurological traits as well as the autism (kind of the way Down Syndrome is more than just developmental delay). It comes from a specific mutation (the only kind of autism with such a specific known cause) and tends to result in non-verbal individuals, though it doesn't always.

Someone here claims they have Rett's.



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26 Jul 2009, 9:11 pm

Temple Grandin is mild. Simon from Mercury Rising is mild, as is Rain Man from...Rain Man.

I don't think I've seen a fictional depiction of someone who's severely* autistic. Wait, the guy in The Black Balloon is severe enough (moderate to severe).

*Completely nonverbal, serious self-harm and self-destructive behaviour, frequent tantrums, unable to take care of personal needs, and would die in very short order without help, all as an adult.



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26 Jul 2009, 9:15 pm

Really depends on how you define mild/severe, doesn't it?

No discussion of autism "severity" can ever make much sense unless everybody agrees on some universal, concrete description of what "severity" means and how to gauge it. To me, the only scale that makes even a speck of sense is the scale of how much support is needed (i.e., intermittent/limited/extensive/pervasive). Any other scale, and you end up with nonsense that can't be applied to the real world at all.

Rett's + speech/language ability is possible. You don't automatically lose speech. Rett's is x-linked dominant, so if you get your non-affected X turned on in the regions of your brain responsible for speech, you end up with "speech preserved" Rett's.


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26 Jul 2009, 9:44 pm

Callista wrote:
Spokane_Girl wrote:
Temple had always seemed mild because she learned to talk at three and a half and she went to normal classes and she just seemed mild when I read her books when she wrote about her childhood.
"Mild" because you can understand what she is talking about and it's not completely alien to your own experiences? 'cause in many cases even really, really obvious autism, if present in someone who can communicate in writing, isn't going to come across as all that foreign to someone with AS. Being mainstreamed just because your parents refuse to put you in special ed isn't an indicator of how non-autistic you are so much as an indicator of not doing any major disruptive behavior that would jam up an NT classroom... Anyway, mild/severe/whatever... I've heard her described as everything from "severely autistic as a child" to "high-functioning" and that's probably because the labels aren't precise.

Gaining speech at three and a half is fairly typical for classic autism. About 90% or so of autistics with speech delays will have speech by age nine, in any case, and most of those will gain it before six. (That doesn't stop the other 10% from learning speech later, becoming literate and writing/typing, or becoming proficient in the use of alternative communication from sign to PECS to picture/symbol-based electronic devices.)

So what's your definition of "severe", anyway? Somebody who has trouble with speech? Somebody who doesn't use speech? Somebody who needs help with ADLs? Somebody with autism+developmental delay? There are a lot of different possibilities.

BTW, though, if you want a very disabling form of autism, try Rett syndrome. It's rare and it includes specific neurological traits as well as the autism (kind of the way Down Syndrome is more than just developmental delay). It comes from a specific mutation (the only kind of autism with such a specific known cause) and tends to result in non-verbal individuals, though it doesn't always.



When you see someone like Simon Linch or the character Adam from House in "Lines of the Sand" and when you watch videos made by Autism Speaks showing how badly effected those kids are by autism, that's severe. No way they can be in a normal classroom. They would need special ed at all times.

Talking at three and a half is early for an autistic. Some talk much later than that like at age seven. Some never learn to talk at all.

Temple just never seemed severe to me from what I have read by her about her childhood. She was raised the same way my mother raised me and she seemed to have understood the rules and knew of the consequences just like I did or else she wouldn't be able to listen because her cognitive level be so low which is common in kids of severe autism. You can't tell a severely autistic child to quit doing something and expect them to listen and then you punish them like you would with a normal child and that kid still wouldn't learn because their cognitive level is so low and explaining their actions still won't get to their head but Temple on the other hand was given rules and expected to follow them and her mother punish her when she didn't follow them and she understood them.

Heck I've read in my records I was severely delayed and I don't agree with that because I have seen myself on the home videos my dad took and I looked typical and I could dress myself and feed myself and knew how to get food and I could fold clothes and I did some pretend play like a normal toddler. How can they say I am severely delayed if I could do all those things? I was even in a classroom with high functioning kids than kids who were severely delayed and handicapped and I knew the rules and followed them.



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27 Jul 2009, 12:08 am

Simon and Raymond fall within the mild category of Autism and its symptoms for that level, and that's an overall IQ of 70 or higher. You start getting more severe around 50 to 60, with under 40/50 usually being of the severe make. This is well documented (I mean the correlation between overall IQ and symptom severity, and it's easy to extrapolate what Simon and Raymond are).

On an unrelated note, it annoys me when Temple speaks of how her parenting made her as high-functioning as she is; this is wrong biologically. It's the genes that turn on as we develop that determine how severe we are, and evidence points to biology rather than the environment as the contributing factor.

On a related note, KingdomOfRats, a member here, is probably as severe as you're going to find who can communicate adequately through typing (her IQ is around 60 to 70 IIRC); she displays symptoms of severe autism.



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27 Jul 2009, 1:04 am

If you give some more specific examples of the situations she'll be in in the play, we could probably come up with some suggestions of how she might act and why. :3


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27 Jul 2009, 10:49 am

I'm in-between annoyance and confusion. You're all talking about severe but, really:

severe what?

Symptoms? Seriously, there must be a lot of people with very severe symptoms (as zero is as low as you can get). And they can be high-functioning, doesn't mean they're mild!

Overall severe symptoms with little or no ability to appear less severe? Talking about that will be harder, because I don't expect many people who have this to be able to communicate it to others.

Simon from Mercury Rising is definitely not doing much better than his underlying symptoms are. He's neither presenting worse nor better than he is.

But I guess I agree with Danielismyname (was it?) his symptoms aren't that severe if you pay attention to him in the film (and not the puzzle or the adult main character). He can do several things that someone with severe symptoms who can't cope with them to appear less severe than he or she truly is won't be able to, especially for his age.

Except for the lack of speech, he could be mild classical or even mild AS. Or he could be moderate AS for all those of you who live somewhere where those with HF AS aren't dead obvious but 'almost normal'.


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