Helen: What's the big idea?
Me: The big idea is that you have to get dressed for school or you're
going to be late.
Helen: What's the small idea?
Me: The small idea is that you have to hold your foot up so I can put your
sock on.
Helen: What's the very, very smallest idea?
Me: I have no idea.
Helen: I don't know either.....I think it's my toes are cold.
(Both of us with uncontrollable giggling).
BTW Helen has just turned 6 and has only started talking in the last 12 months.
But her humour has been evident from an early age.
Example: At age 3, she appeared from her bedroom with sticky tape on both her
upper and lower lip. When I asked her what it was for, her single response
(the only kind she ever made if she spoke at all) was "Lipstick!"
Carolyn
Bob Zenhausern, Ph.D.
St. John's University Bitnet: d...@sjuvm.bitnet
SB 15 Marillac Phone: 718-990-6447
Jamaica, NY 11439 Fax: 718-990-6705
LN...@WOMBAT.NEWCASTLE.EDU.AU writes:
>The following is a conversation I had with Helen last week while I was ...
>Helen: What's the big idea?
>Me: The big idea is that you have to get dressed for school or you're
> going to be late.
>Helen: What's the small idea?
>Me: The small idea is that you have to hold your foot up so I can put your
> sock on.
>Helen: What's the very, very smallest idea?
>Me: I have no idea.
>Helen: I don't know either.....I think it's my toes are cold.
>(Both of us with uncontrollable giggling).
>BTW Helen has just turned 6 and has only started talking in the last
>12 months. But her humour has been evident from an early age.
and this:
>Example: At age 3, she appeared from her bedroom with sticky tape on both her
>upper and lower lip. When I asked her what it was for, her single response
>(the only kind she ever made if she spoke at all) was "Lipstick!"
>Carolyn
is a very sophisticated pun! helen is more high-functioning, at least
from this description, than any autistic person i have ever met.
the poem that jim sinclair quoted as an example of "soggy" poetry some
days ago was written by my mother (and since she doesn't have USENET
access, seeing it was a big surprise! :). pepi streiff has spent
seventeen years busting her ass for autistic people. she has lobbied
and fought from the local level, to the state level, to the federal
level, for years. she has been responsible for the opening of camps,
group homes, chapters of ASA, and many, many eyes. she has helped
more parents than i can number find resources for their sons and
daughters, and for themselves. i am fiercely proud of the work she
has done.
in addition to fighting for her son's rights, my mother has also
acknowledged her pain. he lives in another world, where he cannot
reach us. we love him and know him well enough to see when he is
frustrated, angry with his limitations. we can tell when he sees his
own inabilities and they make his difficult life even harder to bear.
for all of us. don't make the mistake of thinking that my mother's
sad poem represents the whole of how she feels.
i love my brother dearly. i would not trade him for another. but if
i could *cure* him, i would. the things jim sinclair says about what
autism is do not correspond well with my experience. i have cared for
many autistic people, and met many more. i have never yet had what i
would consider a *conversation* with an autistic person. all of the
autistic people i have met have been severely compromised in their
ability to function in the world. they cannot ride city busses alone.
they cannot be left alone in their homes for more than a few hours at
most. they cannot cook simple foods for themselves. they cannot ask
shopkeepers for things they need and then pay for these things.
my brother lives in a group home. he still attends public schools and
will throughout his twenty-first year. his teachers are good, and
well-trained, and they care about him. my parents are still involved
in his education. there are many autistic people like him. non-verbal
or barely verbal people who refuse to look others in the eye unless
forced and have many many "weird" behaviors. as much as i would like
to believe that my kid brother is just misunderstood and oppressed,
not "damaged", i no longer can indulge in those dreams. how does jim
sinclair's vision fit in with the head-banging, non-verbal,
feces-smearing, destructive people that *I* know and care about?
-- --vyxter streiff
The Golem was made of clay, not wood.
I don't know if that's the epitome of my humor. Maybe a minor example of
irony (which of course autistic people are also incapable of).
JS
My idea that the golem was made of wood came from the Xanth novels
by Piers Anthony where the golem was made of wood. I just assumed
the author would not make a gratuitous change like that. Have you
read the Xanth series? If so, what is your reaction since I know
you like SF as a framework for studying Autism.
No, I haven't read the Xanth series. What's it about, and is it relevant
to autism?
JS
Yes, Helen is extremely high-functioning. My intellect pales in comparison
to hers.....and there's a 40 year age difference. She is even a 'quicker
learner' (if the material is presented visually) than her oldest brother. It
took Chris 12 months to learn to read at age 4; it only took Helen half that
time at age 3....she has been reading fluently for at least the last 18 months.
She accomplished this before she ever managed to put two words together in
her spoken speech.
When at age four and a half, I tried to enroll her in kindergarten at a public
school, I was met with a lot of resistance from the authorities and 'experts'.
At a meeting of all concerned, they tried to dissuade me by presenting the
results of a Griffiths Test and Stanford-Binet Test that they had carried
out on her immediately prior to this meeting. Both these tests showed her to
be 'mentally retarded'. I asked if any of them had ever heard her read....
of course, they hadn't and they let me know, in no uncertain terms, that they
believed that a child like Helen, without language, couldn't possibly read.
In the end the Headmaster agreed that if Helen could read as well as I claimed
she could then he would accept her into his school. We set up a test session
for the following day. The look on his face was 'beautiful' as she read
passages from all the books he selected, clearly, fluently and with correct
intonation. Helen started school and she hasn't looked back since.
A few problems are starting to manifest now though. As she is becoming more
socially aware, she is becoming more vulnerable to other's treatment of her.
When she first started school, the taunts from the other children went
unnoticed by her. Unfortunately just in the last few months, it has become
apparent that some of these are in fact starting to strike home. Just
yesterday, when I went to get her from school, I found her on the floor of her
classroom after all the other children had left - spreadeagled and staring at
the ceiling...her faced was flushed and I thought at first she was sick. I
askedher teacher how long she had been like that. The response was about half
an
hour. I couldn't get any response out of Helen, so I craddled her in my arms.
Rocking backwards and forwards. After about a minutes of this, she started to
cry - just tears at first and then it gradually increased to heavy sobbing.
I knew instinctively that something had happened, so I asked the teacher to
work backwards over the days events from the time she took up her position on
the floor. Immediately prior Helen had been examining the things on the
teacher's desk. The teacher had jokingly asked if she was sticky-beaking.
Helen became visibly upset, but after she explained to her that she wasn't
angry and that it was all right for Helen to inspect her things, Helen settled
down, but the next time she looked Helen was flat out on the floor. I knew
that there must be more to it than that. I finally got the teacher to recall
that during assembly, Helen was called out the front to receive a special
award for her good behaviour and academic progress. As it was presented to her
she said in a very clear and beautiful voice (the teacher's words) "Thank you
very much Mr. Perry". At this there was uproarious laughter from some of the
students watching. Helen was not heard to talk after that for the remainder
of the afternoon.
I had to carry her home and it took me an hour to get her back to her old-self.
She went off happily to school again this morning, but I know this won't be
the end....it's just the beginning.
Carolyn
Vyxter,
I'll tell you how it fits: *I'm* one of those autistic people like your
brother. I'm nonverbal much of the time (all the time until I was twelve),
don't make eye contact unless I happen to remember to make a special point
of it, can ride the bus in the small town I live in (which basically just
runs to the university campus and back) but not in larger cities, can't
handle routine shopping consistently enough to keep a steady supply of
food in my apartment, haven't cooked in close to a year, have as many
"weird" behaviors as any autistic person you've met, and yes, I do head-
bang. (I don't smear feces, though. But I know an autistic college
graduate who was still urinating on her bedroom carpet at the age of
thirteen.) I am left alone in my home, for the simple reason that the
state believes I'm too high-functioning to qualify for attendant care;
and as a result of my severely compromised ability to function in the
world (or even in my apartment), I don't eat or sleep regularly, I forget
to change my clothes for days at a time, and I often injure myself.
A few months ago I broke my toe; I can't remember how it happened, and I
never know when something like that is going to happen again. According
to the doctor I saw yesterday, I'm underweight, malnourished, and have
next to no resistance to disease. So now I'm also infected. It happens
once or twice a month. This time, though, I can't fill the antibiotic
prescription because I don't have any money and for some reason my
Medicaid card didn't come in the mail this month, and I can't use speech
well enough to navigate the SRS bureaucracy and find out what happened to
it.
You know where this is leading to? I'm going to die here. Maybe soon, if
this throat infection overwhelms what's left of my immune system and turns
into pneumonia. Maybe a little later, if I can't shop or forget to eat
for a few days too long. Maybe alone at home, if I have another bizarre
accident that's more serious than the ones I've had so far; or maybe on
the streets, if my "weird" appearance attracts more violence of the sort
I've been a target of all my life. Don't think that just because I'm not
mentally retarded, I'm any less affected by autism than your brother is.
Yes, there's a lot wrong with not being able to carry out basic functions
of daily living. I have been fighting unsuccessfully for years to get
the same rehabilitation and training services that other autistic people
need (and getting absolutely no help from ASA, local autism support
agencies, or people like your mother, by the way). There is one tragedy:
that people who need extra help to be able to learn to function
can't get that help, so we remain severely compromised in our ability to
function in the world when *it doesn't have to be that way*.
Autistic people can learn. Autistic people can develop functional skills
commensurate with their overall level of ability. (In other words, if
the autistic people you know are also retarded, don't blame autism for
that. They're separate conditions that just happen to both be present
in the same person. Someone with an I.Q. of 27 is going to have serious
problems with independent living whether xe's autistic or not.) Autistic
people have their own ways of learning and their own ways of functioning,
and programs to teach functional skills to autistic people have a much
better chance of being effective if they focus on accommodating autistic
processes than on eliminating the autism. And there's a second tragedy:
that people who are receiving assistance all too often aren't receiving
very effective assistance, because they're in programs that are trying
to train them not to be autistic instead of teaching them to be autistic
*successfully*.
Finally, autistic people can relate. We do that differently too. But
I'm not surprised to hear you say that your brother cannot reach his
family. If you're so busy being upset because he "isn't normal" that
you can't see the ways he tries to relate, then *you make yourselves
unreachable*. And that's yet another tragedy.
JS