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I recently received a letter from a man named David Miedzianik who lives in England. Mr. Miedzianik
has writtten a twenty page poem called “I hope Some Lass Will Want Me After Reading All This”. He
has also written a book called My Autobiography. Both the poem and the book are very interesting and
worth reading. In both of these works, Mr. Meidzianik draws from his experiences as a person with
autism trying to get along in the world. The poem eloquently expresses the loneliness that people with
autism experience at varying times in their lives.
If you wish to order the book and the poem, send five pounds sterling (do not send U.S. dollars) to:
Child Development Research Unit, University of Nottingham, University Park, Nottingham, England
NG72RD.
Here is a copy of one of four songs that Mr. Meidzianik wrote and sent to me in the hopes that I would
print one or two of them. He is hoping that someone will be able to put music to them. Then he’d like to
make a benefit record for autism. If you want to contact him about his poem, book or songs, write to
him in care of the University of Nottingham address. I will print the other songs he sent in subsequent
issues of The Maap.
Tom’s Temper
David C. Miedzianik
*******
Adam told Eve that George Bush was Kate Bush’s dad.
He hoped they didn’t make this singer’s father president.
As he watched all the election programmes on TV.
He also watched Mrs. Thatcher having tea.
He watched the news about then times a day.
The news never had anything much good to say.
The doctors give Adam tablets to make him see life better.
As he sits under the old apple tree they both sat under.
Now Adam can hear something in the distance it is thunder.
Or is it just his mind playing tricks.
Fantasy and reality have now come to mix.
Adam is once again in a fix.
Eve couldn’t understand Adam’s mind.
That’s why she was so unkind.
*****
I built a bridge
out of nowhere, across nothingness
and wondered if there would be something on the other side.
I built a bridge
out of fog, across darkness
and hoped that there would be light on the other side.
I built a bridge
out of despair, across oblivion
and knew that there would be strength on the other side.
*******
Here is a poem that I shared with the audience in North Carolina. Several parents asked for reprints
which I did not have available at that time. This was written just after the first time that Beth ever
looked at me, when she was 5 years old.
TO BETH
with love from your mother
*******
*******
The Early Years of The Maap (p. 86)
Here is another poem by David C. Miedzianik, a young man who has autism. David lives in England.
Bob Bently’s Bottle
When Bob Bently was a small kid he hid his bottle.
He hid this bottle at the bottom of the garden.
Every day he would go and ask the bottle for pardon.
Pardon for his boyish pranks around the house.
Bob Bently was now a man and the world he didn’t understand.
Although this didn’t matter when the empty bottle was at hand.
Sometimes Bob would blame the bottle when things didn’t go as planned.
By now he’d seen many doctors about his life and he had no wife.
He never told anyone about his bottle that meant so much to him.
Until the day he couldn’t find it at the bottom of the garden.
He then asked his mother what she’d done with the bottle.
She asked his pardon because she’d thrown it away tidying the garden.
Bob went to look in the bin but the bin men had been.
Then he went to look on the council tip for a bit.
He couldn’t find his bottle there and the bin men didn’t care.
Now he doesn’t care for anything too and as for life he hasn’t a clue.
*******
******
Moonbase 2022
by David C. Miedzianik
The year is 2022 and base X3 is one of the few bases on the Moon.
The people on the base look at the Earth and feel gloom.
All the flowers and trees here are in a dome.
There are no fields for people to roam.
Now people are saying there’s too many people on the Earth.
A lot say these people will have to go out in space.
Or the Earth won’t be able to stand many more births.
Although space bases are now beginning to show their worth.
*****
Obsession
by David C. Miedzianik
Some people say that the eye works as fast as a TV camera.
So because of this there’s no need to check the plugs 10 times or so.
I have got a fear that the plugs aren’t off and lights will start to glow.
Maybe then some alien sounds will then come out of the stereo.
Every night it’s a long hard job checking plugs and windows and things.
If the eye is like a TV camera then this obsession isn’t logical.
One look would be fast enough for the eye to take it all in.
This obsession is making me as good as the people in the loony bin.
I then go to check there are still coins in the phone money tin.
Yes it takes longer to do things when you have to check things so much.
Although if I didn’t do this then I’d give up on jobs.
Or I’d be afraid the windows would be opened and we’d all be robbed.
Then I open the window and throw the cat the left overs of a cod.
I then go and check the door knob.
In fact all the numbers are lucky numbers when it comes to checking.
I sometimes like checking things up 9 times.
9 is the number of our house.
Checking the plugs are off 9 times makes my mind as quiet as a mouse.
I very rarely slip up with checking things are safe and secure at night.
If I check things they’ll stay safe until daylight.
The odd times that things don’t get checked is when I leave it to my mum.
She finds checking windows and things not so much fun.
*******
When I was a kid they used to say the brain was like a huge telephone exchange.
Now they say the brain is like a big computer.
Maybe in another 30 years they’ll say the brain is like a space craft or something.
All this as thoughts sing through the mind
.
I now think thoughts about thoughts.
Thoughts are changed by what we’re taught.
Now I look out of my window and the sky looks blue once again.
I’m not chewing my breakfast once again.
World leaders have a lot to chew over these days.
Although all I’m bothered about is having my corn flakes each and every day.
Without these every morning I’d start to waste away.
*******
Dear Parents,
More Able Autistic People? Your editor chose the words carefully. As many of you have been
thinking, not all “high-functioning” people with autism can write to the Maap to describe their interests,
recall their childhood behavior, report their current problems. Not all—not even most—understand
language and the world well enough to make it in the most understanding mainstream programs, let
alone go to college. They may be more able, but they’re not as able as that. My daughter, at 31, has
been able to answer the phone and write down a message for some fifteen years. I remember when it
seemed a miracle—our kind of miracle, of course, the kind of miracle brought about by patient,
repetitive teaching and behavioral rehearsal. After all, she was thirteen before she even started to read
and write. She was older than that before she could pick up the phone and do anything but breathe into
it. She’s able now—so much more able than she was. But listen to what she said the other day when
she picked up the phone and was trying to find the words to say that her friend Andrea wasn’t home. It
was going slowly, so I thought I’d help out: “Say she’s not here and can you take a message.” Jessy
changed the pronouns; I guess she’s learned that a lot of the time you have to. But here’s how she
changed them: “He’s not there and can you take a message?”
Or she comes back from the basement, radiant from checking the boiler. Of course she’s good at
checking things; in fact, one of her problems, at work and at home, is how to control the intense anxiety
she feels when something is forgotten or out of place. But checking the boiler is different; her face is so
radiant that I take a risk. I don’t say, “Why are you smiling?” I know that that’s one of the questions
that can send her into an autistic fit, however many times we’ve talked about how that’s not a bad
question, that people like to see happy faces, that happiness is contagious. (Do I know why it freaks her
out? Of course not, though I can speculate.) But we have to work on these crazy sensitivities, so I do
risk saying, not those exact words, but something like them, hugging her: “What a happy face!” She
must be feeling relaxed, for she accepts it, even explains, an autistic explanation in autistic language:
“The drier going. “You like that?” I say. “Yes—because of things going round and round!” But then:
“You talked about my happy face.” (See, she does get the pronouns right a lot of the time.) She talks
about her emotions; it that good?
She couldn’t have done it ten years ago. “I did get annoyed about that. I smiled about the drier
going.” But we’re not home free; she begins to whimper, to cry a bit. But together we get it under
control…
High-functioning? When she can read and write only the simplest, most explicit English, when her
joys and sorrows are so strange, so childlike in their transparency, so autistic in their weirdness, when
every day provides anecdotes like these, or weirder still? (Don’t worry, there’s no danger of her reading
this in the MAAP!) Yet this is the young woman who’s just received an invitation to a luncheon for the
college’s ten-year employees, who is never late, who knows the routine of the mailroom where she
works to perfection (too much perfection demanded of herself and others; see above.) This is the young
woman who astonishes the bank by keeping her checkbook accurate down to the penny as she watches to
total climb high and higher. (Autistic people rarely have expensive tastes.) This is the daughter who
with absolute (of course) reliability vacuums the house, cleans the bathrooms, does the laundry and the
ironing. This is the artist whose paintings so dazzle with their unexpected colors and brilliant precision
that their sales have raised the total in that bank account by some thousands of dollars. High-
functioning? I guess so. More able? You bet! More able than last year, than the year before that, than
when she left school—and how much more able than that two-year-old who didn’t talk, didn’t feed
herself, shrieked like a banshee (who knows why), looked through her family’s faces as if through a pane
of glass.
Keep on reading the MAAP; keep on slugging, if your child can’t write in for herself/himself, write
just the same. There are a lot of ways to function besides going to college.
Clara Claibourne Park
Ediotr’s Note:
Clara Claibourne Park is the author of The Seige: The First Eight Years Of An Autistic Child.
Recommended by Dr. Eric Schopler of Division TEACCH and Anne Donnellan, PhD of the University
of Wisconsin, it tells in useful detail the story of Jessy’s growth and the ways her family developed to
help her. Those first eight years have been supplemented by a 40 page epilogue which takes Jessy
through the age of 25. The supplement you’ve just read, though, is up to the minute! Out of print for the
past year, The Seige is now available in bookstores. The publisher: Little, Brown & Co., 34 Beacon St.,
Boston, MA 02106.
*******
*****
Here’s an excerpt from another poem by Mr. David C. Miedzianik. David is a gentleman who lives in
England and has autism. He has written his autobiography, which is available by sending 5 pounds
sterling to: Child Development Research Unit, Nottingham University NG7 2RD. The name of the
book is simple “My Autobiography”. David has written a second autobiography. If I hear ordering
information on it, I’ll pass it along to you.
th
6 February 1990
A few years ago I used to imagine I was Prince Charming.
Now I know that this isn’t so.
On the radio someone was talking about an experiment.
This was an experiment to prove that the future has an effect on the present.
They said that the future does effect the present.
They’ve proved it in some lab.
Yes you think the future will be all supersonic when you’re a kid.
When you grow up you get to see the world as a not so nice place.
Although somewhere in the back of your mind is thoughts of space.
Also now we know that we can’t change time’s face.
Maybe I’ll be wiser when I’ve seen that TV programme on time.
Maybe this program will make a chill go down the spine.
Maybe I’ll use my mum’s bottle of wine.
This will take away all bad thoughts of time.
David C. Meidzianik
*******
The Early Years of The Maap (p. 121)
Dear Susan,
We look forward to Maap issues. They are life a lifeline—just knowing that families are struggling
with similar concerns helps. We know a few other autistic children and young adults, bur none as high-
functioning as Melissa is.
She, like so many we have read about in The Maap, falls between the cracks in our local educational
nd
system. She has been enrolled in a Special Day Class (just “regular” special education) since 2 grade,
th
and does fairly well scholastically, but it falls short of really meeting her needs. She is a 6 grader and
the Jr. High years loom forbiddingly ahead. We have, as yet, no idea of where—or if—we will find a
suitable program.
One of her plusses is that she is quite talented musically and just this fall, she started piano lessons. In
addition, for the past year and a half, she, myself (I’m her grandma), her uncle, and aunt, and
(sometimes) her mom, have participated in a musical/theater work-shop known as The Ojai Family
Choraliers. We study acting, voice, dancing, and produce shows that are a lot of work and whole lot of
fun. This has been wonderful for Melissa, because she’s had to learn to really tune in, understand and
follow directions that are, as often as not, given rapidly in the midst of activity and confusion. She’s had
both solos and dialogue, and is a real trooper—as well as a ham. We’re really proud of her.
Georgia Smith
Dear Georgia,
What a wonderful grandma you are! I’m sure there are hundreds of moms and dads reading this that
would love to adopt you into their families! The community theater/music participation by a person with
autism and some of their family and/or close friends is a wonderful idea. Perhaps others will find it a
pleasant family experience.
Susan
*******
Brain Music
by David C. Miedzianik
These days everyone is talking about brain music.
I’m now looking at the calendar and I see it’s 2004.
Although people taking part in this just want more and more.
They drive for miles in their cars to escape from life’s bores.
This is because brain music is the new in thing.
They pay for this with cheques and money saved in tins.
They can hear the sound of their own brain when they’re wired up.
After that they just can’t give it up.
They say that people are looking younger after a few goes at this.
Others just say that the whole thing is a twist.
Some have even put their own brain music on CD’s.
Some brain music sounds better than The Rolling Stones.
Although some peoples brain puts out music.
That you have to listen to on your own.
This music hypes people up more than listening to.
People talking to them from other countries on the phone.
Well soon it will be the year 2005 and the Brain music king is still very much alive.
They say he’s got a Christmas CD coming out.
About it being a hit then that’s no doubt.
They’re putting his tune down phone line 909090.
All the phones are go go.
He’s even coming on TV performing on the Winter snow.
He’s about to set us all aglow.
*******
JONATHAN AT FORTY
by Bernice Singer
*******
Blasted rhetoric!
Monday
by Beth Moreno
Monday
I wake up in
A daze and I wonder
Why do I have to go through this
Again?
*****
Dear Susan,
Here is a poem that our son Guillermo composed to the sky one evening at sunset. Guille is a high-
functioning 7 ½ year old with autism and is doing well this year in his small Learning Handicapped class
at a local elementary school. He has a penchant for dramatics, and enjoyed reciting his poem to the
class, as well as mailing copies out to friends and family. He also enjoyed printing it out on the
computer at home, using the Xerox machine at school, etc. Thanks for the Maap!
Sincerely,
Denise Burgess & Bob Gomez
The Clouds
a Poem by Guille
I love you, clouds,
I love you, sky,
I love you, trees
for pumpkin pie.
*****
Is it Due To Destiny?
Here is an insert I found in a newsletter put out by a residence for retarded men. While I don’t wish to
foist religious literature upon those of you who may be atheist or agnostic, I felt that the thoughts were
sufficiently meritorious to print it.
Blessed are you who take time to listen to difficult speech, for you help us to know that if we persevere we can be
understood.
Blessed are you who talk with us in public places, and ignore the stares of strangers, for in your companionship
we find a haven of relaxation.
Blessed are you who never say to us “Hurry up”, and more blessed are you who do not snatch our tasks from our
hands to do them for us, for often we need time rather than help!
Blessed are you who ask for our help, for our greatest need is to be needed.
Blessed are you who stand beside us as we enter new and untried ventures, for our failures will be outweighed by
the times when we surprise ourselves and you.
Blessed are you who help us know the grace of God, for often we need the help we cannot ask for.
Blessed are you when by all things you assure us that the thing that makes us individuals is not in our peculiar
muscles, not in our wounded nervous systems, nor in our difficulties in learning, but in the God-given self that no
infirmity can confine.
Rejoice and be exceedingly glad, and know that you give us the reassurances that could never be spoken in
words for you deal with us as God deals with all of His Children.
-Anonymous
*******
Dear Susan,
Although many of “our kids” have a problem with driving a car, not all of them do. Jim, who is now
24, took driver training in high school. Driving did not come easily to him at first, but he persevered.
He took private driving lessons in addition to the driver training provided by his high school. He passed
his driving test on the first try at age 17, and has been driving ever since. Yes, he’s had his share of
accidents and tickets, but he is now an experienced and reliable driver. In fact, he works as a driver for a
courier company. He especially likes long drives of 50 miles or more. He is very skilled at finding his
way around in Los Angeles and vicinity.
As a child he loved to ride his bike around the neighborhood and beyond. When he got a bus pass to
ride public transportation to school, he was the happiest kid on earth. One time he asked me, when I
returned from a long day at USC, “Did you go to USC today? I didn’t see you there.” We determined
that we had been at different parts of the campus. His little ride to USC involved two buses and at least
2 hours. Another time he ended up in Pacific Palisades at a friend’s house, just as my husband and our
friend were arriving. When asked, “How did you figure out which buses to take?” he said, “I just did.”
When I need to determine the best route to drive anywhere, I ask Jim. He knows what streets are best
at what times of day. Jim is also good at remembering dates, everything from when we bought various
appliances to birthdays of distant relatives. He is good with sports information too.
Susan Forthman
*******
Editor’s Note: If I could write such lovely poetry, I would have written a poem that had three sculptors
in it. The third sculptor would have been the child him/herself, whose own will to try hard completes the
sculpture.
*******
Here is a reprint from Mifgash Nisi, the Israeli equivalent of The Maap, published by Bernice Singer. If
you wish to subscribe, please send $16.00 to: MIFGASH-NISI, P.O.B. 71066, Jerusalem 91079, Israel.
*******
Dear Susan,
I am enclosing something I wrote quite spontaneously about a year ago. Writing is usually a struggle
because words evade me, and I am such a perfectionist they have to be right.
Reading this poem makes me feel very sad. And that illustrates the complexity of my emergence from
autism. I continue to grow in my understanding of the difference between me and normal people. That
knowledge makes me more secure in my independence, and better able to deal with life situations. I have
at the same time a strong sense of my right to be exactly what I am. There is a terrible sense of loss, for
the way I used to think, which was mine, and not wrong, only different.
My present mind looks at this poor poetry, and wants tot correct the misfitting phrases, fill in the
missing connections. I’ve left it alone. It came from a rare moment when I could look back and
recognize how different I am, and when words, however clumsy, came to express my feelings.
I wish that some other autistic person, coming along the same way, or some parent, gaining a bit of
understanding from reading it, may know, as you always say, “you are not alone.”
If saying that some are more able means that others are less able isn’t it also true that saying that some
are more advanced means others are less advanced? I don’t think that one term is better than the other. I
think there is a need to keep changing the words because with repetition they become labels.
I took job training testing recently. My highest scores were in verbal categories. My spatial perception
score is only average. One of the most satisfying jobs I ever had is one for which I would not be
qualified, based on my test scores.
Anonymous
Today I Think
High-Functioning autistic means I don’t
Understand that home is no longer there.
I got a bicycle, rode to the farm,
I wanted to see.
It wasn’t enough, I wanted to be
In that place, to open the door,
To see the old dog, so many years dead
To see my father’s tools in the shed.
Editor’s Note: As to your question concerning “more able” versus “ more advanced”. I chose the latter
because, if I were the person being “labeled” who was less______, I’d prefer less advanced (less
insulting).
*******
Dear Susan,
This is a poem my daughter wrote in school around Halloween. She always loved (and still does) Peter
Pan. She was also reading the Complete Works of Shakespeare at the time. It’s also in a shape like
Silverstein would write. I hope you enjoy it.
Sincerely,
Anne Rubright
HALLOWEEEN DREAM
I hate haunted houses!
I hate hearing hoots!
And I most especially
hate Halloween
The last time I went
to a haunted house
I very clearly heard
The squeaks of a mouse.
What’s more, I very clearly caught
A goblin that escaped my clutches.
I ate a bean and I got draught
with anger1 When I turned around I saw
the ghost of Captain Hook! Ugly he was
with a silvery hook. I gaped and had to draw
a sword, but without a word, he vanished!
And I looked up. I ran away. Next I came and
saw a coronet. I then went to the living
room and gasped. The ghosts of Romeo and
Juliet! I didn’t want to draw. I screamed
when suddenly they faded! I saw some bats-
they came near me, and suddenly some elves
and scarecrows and monster that gleamed
A mummy, witch, vampire and Frankenstein
came near me, they cackled, they had warts
they screeched at me! Pretty soon I woke
up, I sighed, I was happy
I said “Whew! It was all a dream! For a
moment there were things of all sorts!
So now when it’s Halloween, when it’s ghost
and ghoulie night, I don’t dare go trick or
treatin’ So I won’t get any fright!
MORE POEMS
In the USA and Canada they don’t know how to solve it for the World.
A lot of governments just make money for their own pockets.
Now they’re making even more money making bombs and space rockets.
An Unknown Name
By Marean J. Price
*******
CREATIVE WRITING
It’s now the year 2001. On Earth we wonder where all the strange people have gone.
Some people go off into space to get away from the cops.
Others go into space because Earth’s too hot for them.
A few go into space to run radio stations.
Quite a few are out in space from the United Nations.
Up to now they’ve had no wars in space.
This is because of the problems of radiation and nuclear waste.
Also the law says they can’t take nuclear bombs into spacecraft.
Having bombs like these in space would be pretty daft.
David C. Miedzianik
*******
*******
My Own Planet
By David C. Miedzianik
QUOTABLE AUOTES
In a conversation with a very caring and sensitive father of a young child with autism, I was told, “He is
very perfect in his imperfection. He is truly complete.”
*******
Who Am I
By Heather Elson
Even though I was born a Halloween baby, I am not a ghost; I am truly flesh and blood and have feelings
and habits like other people.
I really like most people although sometimes, being friendly makes me anxious. When I get low marks
(like 0-50), I’m anxious too.
Last year I was in 8 – 5 and just about the smartest in the class. So you can see that I am really quite
smart.
Laziness is not one of my traits, as I’m very energetic. One of my favourite things is to go for long walks
with my dad.
In my friendly way I try to greet people cheerfully, especially when I’m at school.
You can see by reading this that I am a nice person, not a spooky one.
*******
These days facts about people are being put into computers.
In the future maybe this’ll happen more and more.
This is how governments settle scores.
By having facts on people.
I suppose they’ve got my name in their computers somewhere.
Well anyway I’m not bothered and I don’t care.
These days computers are only as smart as the people that feed them.
I bet most of them that do this can’t hardly count to ten.
*******
You and I
By Elaine Popovich
I am a resident. You reside.
I am admitted. You move in.
I have behavior problems. You are rude.
I am noncompliant. You don’t like being told what to do.
When I ask you out to dinner, it is an outing. When you ask someone out, it is a date.
I don’t know how many people have read the progress notes people write about me. I don’t even know
what is in there. You didn’t speak to your best friend for a month after she read your journal.
I make mistakes during my check writing program. Someday I might get a bank account. You forget to
record withdrawals from your account. The bank calls to remind you.
I celebrated my birthday yesterday with 5 other residents and 2 staff members. I hope my family sends
me a card. Your family threw you a surprise party.
I am on a special diet because I am 5 pounds over my ideal body weight. Your doctor gave up telling
you.
I am learning household skills. You hate housework.
I am learning leisure skills. Your shirt says you’re a “couch potato”.
My case manager and other professionals set goals for me for next year. You haven’t decided what you
want out of life.
Someday I will be discharged – maybe. You will move onward and upward.
This poem was printed in MO TASH, Missouri TASH’s newsletter. The author works with Lutheran School
Services in Missouri.
*******
Dear Susan,
Over this past week, my friend David Miedzianik’s mother died. David writes poetry and has autism.
So far, David has written three books, the latest being “Taking a Load off My Mind”. He has also written
“My Autobiography” and “I Hope Some Lass Will Want Me After Reading All This”. They are
published by the Child Development Unit at the University of Nottingham. For information on ordering
these books, write to: Elizabeth Newson, Child Development Research Unit, Nottingham University,
Nottingham, England NG7 2RD.
David’s address is: 9 Keppel Drive, Scholes, Rotterham, Yorkshire, England S61 2SX. He is very
saddened by the death of his mother and needs all the support and publicity he can get. Along with this
letter is an example of his poetry from his new book.
Sincerely,
Kathy Lissner
Editor’s Note:
Kathy is right. I hope that many of you will write to David and/or order some of his books. Two are
collections of his poems, while the other are his reminiscences about his life. (David is in his forties.)
Now that his mother is gone, I don’t know what will happen to him. He has no job, and as far as I can
know from a distance, he has no remaining relatives to rely on. The next page contains one of his poems.
I saw on the TV a few days ago that they’ve invented a new micro-chip.
They think computer things will be able to talk because of this.
Maybe soon there’ll be typewriters that’ll print what you say.
I like new inventions because they make my day.
I wonder if all these inventions might punch a bigger hole in the ozone.
Mind you, I think all this ozone thing is becoming a bit of a racket.
With selling all these ozone friendly things people are making a packet.
No doubt they’ll still be talking about this in my new tomorrow.
I wonder if they’ll ever solve the problems of war.
In the future there might be war more and more.
No doubt people will still have their dogs and cats in years to come.
In the future these might have a better deal than people.
Some say they’ve got a better deal than people now.
I wouldn’t want a dog or a cat anyhow.
Maybe they’ll give people loads of pills to forget their troubles.
Although they already do this now.
*******
Autispeak
This is the language we speak,
we who can talk without sound.
This is our voice in the silence
Where every work has weight, and no thought is ever lost.
*******
*******
A Saturday in November
By David C. Miedzianik
Well, it’s another Saturday in November today.
There isn’t much sunshine coming through the clouds.
Hour after hour goes by on the clock.
I’ve set my video to record off the TV.
These days I record more than I watch the video.
The TV set has a friendly glow at night.
The nights are boring and Spring is still out of sight.
Other Items
High Latitudes
By Mirta Mihilovic
High Latitudes saw my birth
I grew looking at a convex horizon and feeling a perpetual wind:
Signs of this huge land
and it’s ocean
Note of explanation: I was born in Punta Arenas, Chile. In these high latitudes due to a series of
geological happenings it is possible to natural gas escaping next to frozen glaciers, and it creates a
mixture of climates in one zone. It is also a region that without the comfort of the urban life, it makes us
face life on a daily basis with our physical limitations. In the translation, the use of the small “i” in place
of the capital “I” symbolizes humility. I believe that the translation can be improved. English is my
second language.
*******
The weather is cold some days and other days it warms up.
Recently there has been snow on the ground a lot.
Some days it even rains but this time of year it’s never hot.
It’s a bit unusual for it to snow before Christmas.
Even so there’s been no cold weather payments up to now.
If the weather gets worse I hope there’ll be payments somehow.
David C. Miedzianik
*******
BY JULIE DONNELLY
During the last year I attempted to send out a newsletter to those concerned about gifted individuals
with autism. I underestimated the effort that this would take on top of a full time job as autism
consultant/inclusion facilitator and working on a doctorate in Special Education with a focus on research
in autism. Recently, I decided to throw my writing energies into helping Susan Moreno, who does this
wonderful newsletter.
The first question the reader might ask is “What is the difference between the gifted individual with
autism and the High-functioning or More Able person with autism that Susan’s newsletter has always
addressed?” After all, it seems as if most individuals with autism, whether called high or low
functioning, have gifts and talents. My perspective came from finding that Gifted Education in the
schools is now beginning to address the needs of students whom they call “Special Needs Gifted.”
Formerly, to qualify for gifted education programs, a student had to have a very high IQ and very high
achievement and be that sort of cream of the crop student who does everything right. Many students,
who were extremely high in one area but not another, or who tested poorly, could not qualify. Some
became discouraged or bored in the schools and their achievement test scores, grades or behavior held
them back from receiving the enriched education that could encourage them to meet their potential.
Some had physical, sensory, or neurological disabilities that masked their high abilities. In the past ten
years there has been a growth in the literature (articles and books) on these Special Needs Gifted
students. Regulations have been changed and many programs have been started that serve the Gifted
Learning Disabled, the Gifted with behavioral or emotional disorders, and those with sensory or physical
handicaps. In my review of the literature, however, I found not one reference on the gifted person with
autism, a category that seemed very obvious to me because of the many individuals I know who have
exceptional abilities often masked by that disability. It became my mission to see that our children could
be served in these new programs for Special Needs Gifted.
I felt both professionals and parents needed to become aware of this information. Toward this goal I
wrote, with Dr. Reuben Altman of the University of Missouri-Columbia, an article on the gifted student
with autism that has been accepted by one of the leading journals in gifted education, the Roeper
Review. I also have presented this information at state and national conferences, and to further inform
parents and professionals, I published a newsletter and now a column for The Maap.
The basic theme is this: There are many individuals with autism who are now able to function within
the regular school setting and who have exceptional gifts and talents, along with some areas of academic,
social and behavioral difficulty. They have previously been served through special education for their
weaknesses, and their strengths often ignored or treated as “savant tricks.” Many schools or whole states
are establishing programs for the learning disabled gifted, underachieving gifted, culturally different
gifted, and/or disabled gifted. Many schools or states are accepting alternative criteria for gifted
programs. When considering educational services for a person with autism, their strengths should be
used to motivate and enrich their education. This may include being served in multiple settings including
the regular classroom, special education services, and/or gifted programs. As gifted education is
beginning to accept that extreme ability can occur with disability, they need to know that many students
with autism fit this profile. Parents should be aware of this to advocate for their children, and
professionals should be aware so these students are not overlooked when choosing students for gifted
programs.
Within this column, I hope to share information on programs, resources and individual successes.
Please send me information that could be helpful to others such as your local or state gifted criteria,
policies or programs that favor special needs gifted students. This area is new and we must work together
to help nurture and expand this type of service.
In my newsletter, I was also publishing information on some individuals with autism who have been
successful in the educational system and are now struggling with the employment world. To help these
young adults we need to network and share leads and resources. Brian Lenehan, who has a Ph.D in
organic chemistry, is now employed. Congratulations, Brian!! Others still looking for professional work
include:
Kathy Lissner of St. Louis Missouri. Kathy has degrees in political science and medical transcription and
has an interest in advocacy work for disabled persons.
Jean-Paul Bovee has a Master’s degree in Medieval and Roman History and is completing a Master’s in
Library and Information Science, summer 1994. Jean-Paul is looking for employment in library related
work but also has experience in the disability field. Write these individuals in care of my address or The
Maap.
I am beginning a research project in which I take an in-depth look at the educational life history of
several gifted individuals with autism. I am looking for individuals who: 1) have completed high school,
2) have been diagnosed with Autism, Asperger’s syndrome or Pervasive Developmental Disorder at
some time in their life, 3) have at had some time had an intelligence test with a full scale or section score
over 125 or subtest of 12, 4) and are willing to be interviewed, share school records and have one or
more family member and professional involved in their life be interviewed. I would like to have a
diverse group of individuals (gender, ethnic background, rural/urban, etc.). The purpose of this research
project is to increase our knowledge of what educational practices are of most benefit to these
individuals. I would appreciate any assistance in finding persons who are willing to participate.
Please feel free to write and share information or ask questions about the topics in this column: Julie
A. Donnelly 5350 Hayes Road, Columbia, Missouri 65201
*******
Volume III 1994 (p. 8-9)
The following poems and letter are from Our Voice, the newsletter of Autism Network International,
Issue #4. If you have autism and wish to be in contact (in writing, by E-Mail, by phone, or in person)
with others who have autism, A.N.I. may be for you. Subscription fee of $15.00 per year ($20.00
overseas) for our voice can be sent to:
Jim Sinclair, P.O. Box 448, Syracuse, NY 13210-0448.
Memories
Freedom Fears
*******
Well some things get better and other things get worse.
Some say the new century will start with birth of the new age.
As far as man’s history goes this’ll be an interesting stage.
Then they might have cars that drive themselves.
This’d be good if you can’t drive like me.
Although for people who drive for a living
Cars like this wouldn’t fill them with glee,
As people like this wouldn’t know what to do with their car keys.
*****
27 Looking Back at 15
by Katherine French
Reprinted from Page 3, Issue 4 of Our Voice
I used to think God was punishing me. I was unhappy, disturbed, scared, not comprehending everyday
life. I felt I was in a trance. I feel empathy for that teenager. She hurt and no one felt her pain. She lay
alone on her tear-soaked pillow. She cried every day. Alone in her world. Not feeling the rhythm of
life. She was pulled along like a strip of film by a camera’s gears. Other people chose the photos
imprinted on the film. She was too confused, overloaded and numb to look through the viewfinder to
choose a photo. If only someone would have slowed down and not advanced so rapidly. Every day was
a double exposure. I absorbed nothing of the distorted images cast upon me. The final print portrayed
the double exposure. Inquisitive people stared down at me to figure out what I was. Depressed? Manic-
Depressive? PMS, Borderline Personality Disorder?
What I am is Autistic. I now advance my film in slow motion. I am happy and content with my style
of living and of learning. I take the time needed for me to process this adventure called life. I limit the
subjects in each frame and focus on a comfortable amount of scenery.
*****
*******
“School”
School is
Chores
Homework
Ow a paper cut
Oh all the homework I have to do
Later I get to go home
“Mission Impossible”
By: David Miedzianik
Valentine Sonnet
By: Sharron Loree
********
I thought I said
The thought I thought
Just as I thought it,
But I didn’t
It changed.
*******
Ever since I got my cat, Little Lady from a farm, I have always admired her. She is white, and all of
her tail and the top of her head is black. She also has a black spot on her back and one directly
underneath it on her side. She has silvery grey eyes that glow with an unearthly silver light in the dark.
When we got her home the next door neighbors came to see her. We discovered her strange habits at
dinner the next night. Little Lady hopped up on an empty chair and looked around for a while. Then she
hopped down and ate a pea that my little brother had dropped. Then, a few nights later, a kernel of corn
was dropped and Little Lady ate it.
Her favorite food is chicken. She likes to chew on door stoppers and eat houseplants. Mom now puts
houseplants where Little Lady never goes and, since the door stopper in my bathroom is the only one she
chews, I wrapped a chenille stick, or a wire decorated with colored fuzz over it.
We all love Little Lady, even if she is a lot of work.
*******
*******
Volume IV 1995 (p. 7)
Dear friends:
A wonderful thing happened at the Maap Conference. It was something I had longed for all of my life,
but lately I figured out that my chances were in the less than 10% level.
On the plane back to California, I began writing what I was feeling. Some A.S.A. directors heard it
and said that I should send it to Maap, ANI, etc. for publication in newsletters and other literature. Since
so many people were a part of my “miraculous” event, I have written an “open letter,” because they
know who they are. This is to sooo many people that attended the Maap Conference:
This open letter came from my heart, gliding on riverlets of tears. (of joy) I’ve never had a peer group.
I’ve seldom experienced acquaintance and had nearly given up looking for either.
“Peace at Last”
Contentment, I’ve found contentment. No stress, no fear, abiding Contentment.
I came to you, stressed out, fighting tears, alone!, and feeling unwanted. At church I’m wanted, (They
have no choice). At home I’m wanted, but 2,000 miles away? I was scared.
I had a thousand “what if’s.” What if I get lost? What if I lose something? What if I’m rejected? What
if?…What if?…What if?
BUT…I was greeted by smiles, and outstretched hands. “Oh! Good! You made it!” I was welcome, I
was wanted, I was Home?
A second family, that’s what I found. An extended family, an international extended family – Wow!
I now have…about twenty…twenty new brothers, twenty new sisters – No!…Wait…twenty and
twenty makes forty. I have forty new brothers and sisters.
If that isn’t extended family then what is? They came from other states, other nations, even other
continents, and have entered into my
I arrived scared, next to panic. Wanting friends, but afraid to ask. Or, perhaps not knowing “how” but
others did too! We were all anxious, all hesitant, excited and afraid, thrilled and panicking.
But, commonality took over. We had more in commonality than we did in diversity. Commonality
“bonded us” into a family.
There is now a happiness inside of me. One I can’t contain. (I think the Cheshire Cat’s grin took up
residence inside of me.) The happiness is sooo BIG it keeps dripping out of my eyes.
I sit here contented grinning on the inside of peace. That cheshire grin tickles and makes me grin.
How can I say “thank you!” How can I ever tell you how precious you have become to me.
In you…I have found a reflection of myself. In you…I have found “I’m O.K. you’re O.K.!” I’m not
the me I used to be, I’m now a part of the bigger WE!
Thank you,
Geneva Wulf
********
*******
In previous columns, I have explained why it is important to add another new name, Gifted student
with autism, to the confusion of names such as High-functioning Autism, Aspergers, Hyperlexia,
Pervasive Developmental Disorder, and More Advanced Person with Autism. Gifted Autistic is an
educational term that would be understood by professionals in the gifted field whose jargon includes
Special Needs Gifted and Learning Disabled Gifted. These teachers and administrators would not
understand and be inclined to choose for their programs students with labels that use Autism/
Asperger/ PDD terminology. To get our students in their programs, we have to define our kids in
their language.
In this column, I want to discuss what it is that good gifted programs do that make it worth the
effort to advocate for including our students.
The first and most obvious is in that re-labeling students Gifted Autistic, we are recognizing their
strengths as well as their weaknesses. Our deficit model of labeling and treatment has resulted in
poor self esteem, stress, and lowered motivation. Recognition of their gifts can give these individuals
a reason to stay involved with school and learning. They are often able to find peers, teachers, and
mentors who share their intense interests associated with gifted programs. They find subject matter
that is more stimulating and they can increase their learning to a speed at which they are not bored.
Gifted programs have more freedom in their choice of content. They often choose to study topics
that are of particular interest to the group of students that the have in the program. They look at
topics in more depth and study the people and methods beneath the surface details.
However, it is not just the choice of topic that is different, it is the method and thinking processes
that are encouraged. There is more open endedness and self-responsibility in their studies. Higher
level thinking is promoted and evidence of good reasoning may be as important as the getting the
“correct” answer. Students are expected to research subjects of interest and learn how to write up and
present their findings. Material is presented in a variety of ways, including media, hands on,
simulations, and group interactions. The pacing is faster and there is more variety in the curriculum.
The setting of a good gifted program usually varies from the regular classroom. Learning is more
student centered and encourages independence rather than dependence. There is often higher
mobility in this type of learning environment, because it is assumed that you will have to go places
and do things to get information, rather than to sit and listen to lecture.
Gifted learning deals more with process than product, but when there is a product, it tends to be
something that has value in “real” life. Students often study the real problems of science or society.
They present their performances to real audiences. Their inventions or solutions may have real
effects on their lives. Good gifted programs are future oriented and include the arts, world affairs and
global perspective, computers, thinking and communication skills, and career education.
In addition, it is being recognized that many gifted students need counseling and support in
learning social skills. Just as our high-functioning students with autism may have strengths in
intellectual abilities, but poor affective development, many exceptionally bright students are at risk
for social development problems. Good gifted programs are now teaching to Bloom’s Taxonomy of
Affective Education as well as his cognitive levels.
Currently, there is debate over “inclusion,” and whether gifted students should receive separate
programming or be in heterogeneous classrooms. Real life is heterogeneous, and I believe children
should be prepared to live and work in a society with individuals of all levels of ability and disability.
Ideally, good gifted curriculums could take place in any classroom and teachers could adapt to meet
individual needs. However, if this is not happening in your school now, you may want to consider
whether pull-out gifted services would be of benefit to your student with High- functioning Autism
or Asperger’s Syndrome for at least a portion of their program. Special Needs Gifted programs have
been organized for those students who have both abilities and disabilities, so they can receive special
programming and support services.
Parents or professionals who have had experiences with this kind of programming are encouraged
to share what they have learned by writing me through MAAP Services.
*******
********
Rhyme Time
By Corey Cafagna
*******
“The Puppet”
Anonymous
I am a puppet,
indestructible, undying.
My strings cannot be seen,
nor can the people pulling them.
Strings, connected to my limbs
my heart, my mind.
Someone’s running my life,
and I cannot break the strings.
Because, you see
I am just a puppet.
With no feelings, no tears,
never given a chance.
Yet, as the wood inside rots
They will just fill it back up with something stronger.
Because I am a puppet
needing nothing to survive.
But won’t they be surprised
when all the wood rots away
and all they can hear
is a voice laughing.
*******
Volume II 1996 (p. 6)
*******
Dear Susan,
We have found your information packet very interesting, as was “The Maap” and are grateful to you
for your providing this information. As the English as a Second Language Support Teacher for Special
Educational Needs in Glasgow Division I am currently involved in the teaching of two pupils diagnosed
as having autism, but whose home languages are not English (one from the Chinese community whose
language is Cantonese and one from the Nigerian community whose language is Ibo.) Up until now none
of the team have been able to find reference to any research/findings on pupils like this. I found your
address via the Internet and even there I could find no reference to Bilingual Autistic children.
I would be very grateful if you can help me by providing information or contacts on this subject.
We here were interested in your account of your own experiences as a parent of a child with two
background languages. As we are coming from the “bilingual/educational” point of view, so to speak, we
find advice to exclude a home language difficult to accept, as we are well aware of the benefits of
bilingualism in general, and have seen it benefit children who have learning difficulties. It is a problem
when you get professional from different fields giving what appears to be conflicting advice from
genuinely held convictions. I feel for parents for whom English is not their first language (and who
sometimes feel that they are not particularly competent or confident in it). A language is not just words,
but concepts and ideas, a culture and history all of its own. I wonder if we are not cutting some of these
children off from their birthright by telling parents that they must only use English with the child. Your
experience with your daughter who has a complex language and communication difficulty like Autism
makes me wonder if I am right – but until there is research evidence no one will know. I would be very
grateful if you would print my request for any information in this area.
Thank you for your assistance and wishing you all the best.
Yours sincerely,
Catherine A. R. Brown
Bilingual Support Unit
Dowanhill Primary School
30 Havelock St
Glasgow G11 5JE, Scotland
*******
Volume III 1996 (p. 8)
*******
The following is a speech given by Mr. Perry Hoffman at our September Maap Conference. Perry’s talk
was riveting to his audience. The feedback afterward was so tremendous that we contacted him and he
agreed to let us reprint it in the Maap.
I observe the man with the briefcase and I wonder, “Where is his destination? What kind of life does
he have?” Neatly dressed in business attire, he seems to me to be very important. The man with the
briefcase probably drives a car, wears good clothes, and engages in regular conversations with his
girlfriend or spouse. Does the usual things with his wife and children. He is cleaned – polished. Smooth.
Slice of Jimmy Stewart Americana. Down to earth, all-American guy. I’d love to meet him. Wouldn’t
anyone?
I look at the man with the briefcase with envy. I want to be just like him. One thing is for certain he’s
not autistic. You won’t hear echolia from this man. He doesn’t need routine. Doesn’t need time for Judge
Wopner at 6:30 like Rainman. I sit in my room a prisoner to my autism. Mom and sis doing their loving
best to get me out. I wanted to get out- really get out. I wanted to love, to feel, to connect. But I couldn’t.
I was stuck. So I continue to look at the man with the briefcase and say, “How do you do it? What’s your
secret to relationships?”
Flashback – December of ’78. Cute red head girl caught my eye. Looking to impress. If she liked me, I
would get boarding pass to real world. Closer to having a relationship. Closer to my dream of becoming
the man with the briefcase. Closer to being a regular guy.
Through my shyness and awkwardness, I summoned the courage to get her number. I did it. I had
arrived. I started becoming a pen pal to her. She started telling me intimate details about her hopes,
dreams, and aspirations. Perhaps this was an opportunity to tell her what I was – that I was autistic.
Wrote about autism in Christmas card. Days and nights passed. No response. Was it something I did or
said? I turned to my friend and he decided that we should go over to her house. In excited anticipation, I
bought her a little Christmas gift.
When we arrived, I looked into her soft sweet face. Upon seeing me, she turned to my friend and said
loudly, “Now why did you have to bring him and his autism over here?” I was devastated. The Christmas
present I had for her shook in my hand. I walked to the nearest garbage can and threw it away.
“Boy was I stupid,” I said, crying. “Why in God’s name did I have to tell her that I was autistic as a
child?”
From that point on I denounced my autism. I buried it, vetoed it, denied it, cursed it, exorcised it by
putting a stake in its’ heart. I never tried harder to become the man with the briefcase. Read the New
York Times. Glanced at the Wall Street Journal. Personified cool, like Miles Davis and Frank Sinatra. Be
suave like Tom Cruise. Be a sophisticate like Denzel Washington. Observe how the regular people act at
singles clubs and parties. Act like a businessman. “Good morning sir – pleased to meet you. Here is my
card. Let’s negotiate the deal.”
Man with a briefcase. Man with a position. Man with a condo. Man with a real Ferrari in his driveway.
Bring him into a social circle and he’ll astound you with his facts and figures. Man who knows leaders of
Ghana and Greece. Man who knows Troy Aikman’s passing percentage. Man who knows the exact
number of games Cal Ripkin played. He’s the foremost expert on relationships. Go ask him. One thing’s
for certain – he’s not autistic. Ain’t no echolalia from this man!
I tried to act like the man with the briefcase. Took on intellect and coolness. Raised hand in classroom
– decorated language with sophisticated tongue. Impress friends with my knowledge of restaurants, art,
movies, books, and sports. Goal: to become multi-cultural man.
Bury autism layers. Don’t reveal anything. Deny, my past. Always remember to be phony and plastic.
Don’t be true to yourself. The man with the briefcase would do it that way. One thing’s for certain – he’s
not autistic. Doesn’t need time for Wopner at 6:30 like Rainman.
I was slowly dying. There were days I truly wanted to end it all. If any days were good, I didn’t
deserve it. I shouldn’t be happy. Autism teaches you that – because it’s a life sentence. In my jail, the
nights were always cold, dark, and lonely. Relationships were going nowhere.
By the time I hit my late twenties, I had enough of the carnage, the hate, and the self-pity. Perhaps
there were autistic people who pretty much went what I went through. Instead of absorbing, let me give –
let me share – let me help others who were stuck in their own darkness.
Fast forward to ’96. Clinton in White House. Chicago Bulls rule NBA. Independence Day in the
cinema. WWW Dot Com universal language. Man offers experience and help to parents. Man seeking to
guide and teach others.
Today I write this to all my autistic friends to say, “Yes, I have been there. Did that. My story is your
neighbor’s story. Our story is Temple Grandin’s and Donna Williams’. It includes the four year old who
is about to be diagnosed with autism. It’s all about us.”
We’ve all had that awkward moment. From that heartbreaking dating experience to that personal
rejection. It hurts. It stinks big time. We want to love, cherish, heal, and champion our partners. We can
do these things. I know we ca! People, though, just won’t give us that second look because we are/or
were autistic.
I said goodbye to the man with the briefcase a long time o. I have my own life to worry about now.
Facing up to myself is indeed rather scary. I don’t know where this will lead me. I still feel quite alone. I
feel practically naked that I revealed so much. Every person I tell constitutes great risk for me. Will they
accept me, hug and embrace me, or will they run away from me – afraid of what I was. I ask myself in
the realm of relationships: is this an act of courage – or blind faith?
Mel Gibson’s “Wallace” character in Braveheart said, “Every man ides, but not every man truly lives.”
If that’s the case, let me truly live. To work, to play, to engage in a conversation with a friend, to go off
to faraway places, to share a pizza with someone special. I can do that, you can do that. As a matter of
fact, we can all do that.
*******
BOOKS
Books, books, they come in all colors and sizes.
Drama can make you cry, or warmly touch your heart.
Comedy can make you laugh ‘til your blue!
Adventure can bring to life your wildest dreams.
Horror can make you jump out of your skin in fright!
Books take you to new worlds, with new people and places.
I Can’t Concentrate
By David Miedzianik
th
Well it’s just turned 7pm on July 30 , 1996
I’ve just been watching TV.
These days I get the news and that off of the TV or radio
These days I very rarely ever get the news from reading newspapers.
My concentration has never been good.
I think it’s also getting worse.
Not being able to concentrate can sometimes can be a curse.
Poor concentration sometimes makes a mess of my verse.
*******
*******
WE ARE RESPONSIBLE
by Ina Hughes Charlotte, NC
*******
Every little rock I see is a mystery to me, was it flying ‘round in space, or come froma big earthquake?
Every little rock I see is a mystery to me, was it at the top of a mountain, or fallen from a volcano?
Every little rock I see is a mystery to me.
*******
One day I said to my mum “I think I’m going to make it now” or something like that.
I said this after, I’d been writing off, to some United States radio stations, about some songs.
I used to write to these, radio stations a lot, asking them to do, songs for autism.
My mum turned round, and said, “miracles don’t happen”.
In those days, I used to think if I wrote off enough, I’d drop lucky in the end.
Well through the years, I have had bits of luck writing off to places.
Although I’ve never had anything that’s ever got me off of the sick pay list.
After writing My Autobiography I though to myself “Oh now I’ll get on”.
Although as more and more years go by, I feel that my mum was right, and I was wrong.
Well anyway what does fame matter? As long as I live my life, and get along.
This weekend I’ve been phoning people up from the adverts I’ve put in music papers.
I keep on hoping, that these people will do me songs.
I sometimes get sick and tired of seeing what people can be like.
Certainly if you’re autistic, most of the time you get the dirty end of the stick.
In England when you ask for anything, the answer is nearly always no.
They ought to call England, No, instead of England.
No to playing my guitar, no to my poems, no to getting dates, I’m fed-up with the place.
I don’t know if its imagination or what, but people in the United States seem to say yes more.
What with being autistic, it didn’t take me long to learn the score.
When you are autistic, life is mostly a bore.
*******
The best book is the book that has never been written…
The best book is the book that has never been read…
The best words are the words that have never been said…
The best words are the words that have never been heard…
The best pictures and paintings come from within…
Locked away and only one person may see what
her or she has locked away in their inner world…
The world within is a world that controls thoughts, ideas, feelings, memorable moments, of dreams gone
by, nightmares, a world of laughter, of sadness, anger, loneliness, of adventure beyond your wildest
dreams…
A world of love and hate and of between…
A world that was here long before time ever existed…
And world that will never die…
A world that will live forever and ever…
Not even death will harm a person’s soul…
The only inhabitants of the inner world…
A world so indescribable that it would take a lifetime to write and yet you would’ve hardly even start…
It’s so indescribable that I couldn’t start.
The inner world has no starting point at all
It in itself is infinity and infinity is it.
It is the hardest maze and the best book or story or the biggest puzzle…
See you next time.
*******
Volume I 1998 (p. 14-17)
We live in a haunting world on the insides of ourselves. We are separate, but not equal.
Autism is not a disease. It is a gift only we who live inside autistic spheres can understand. Because of
profound difference of behavior, autistic children become cursed outcasts. The vast outside doesn’t care
to know them. They’re either shut away in homes for the retarded, or they’re expected to learn the ways
of hostile, alien world of other humans and at least pretend to act and live the way others act and live.
Some are even medicated with dangerous drugs to try to make them more so-called normal.
To take away a little child’s inner home of safety is a sin of society. As an autistic child sits rocking,
humming quietly, she is usually labeled many words with definitions of negativity. These words bound
from the tongues of strangers who patronize because they have no time to learn, only time to judge. She
is denied the respect of even a “normal” child, which is hardly much. Children aren’t much respected,
and grown-ups treat them as if they’ve no right to privacy. Autistic and other unique-spirited children
have even less a right to privacy and it is autistic children that need it the most.
Consider the image of the young autistic miss who is gifted with extraordinary sense organs. The
countless, beautiful experiences she is fed with from the enriching personal inner realm. She uses this to
create little drawings with intense color and minute detail. She sees with more than eyes. She sees what
others don’t. She is quite fascinated with small kitchen utensils. Her drawings are perfect paper replicas
of glittering saltshakers, pepper grinders, and flatware with gleaming handles. These tiny treasures
absorb her attention. Some surrounding adults may compliment her abilities to show detail and
perspective. Without formal art training, she sees all the reality of the pepper grinder or flatware in her
mind. Her autistic gift of an obsession for sameness is transformed into art with the precision of a
photograph. Yet some surrounding adults with their know-better attitudes quite intact may come along to
say, “But what art is this? Such a young child, and she’s obsessing over inanimate objects.” What
business is that of anyone’s? She is joyful with things others don’t find joy in. That is the root of original
thinking. It is different, not wrong.
Consider the work of Pop artists of the 1960’s. Who is to say there is only one steel definition of art? If
there would be no deviation from what is called traditional or acceptable, then there would never be
newness. There never would burst forth ballet by Stravinsky, there would never be any poetic techniques
to follow Lord Byron and Shakespeare. There would be no Dylan Thomas or Maya Angelou. There
never would be Picasso, O’Keefe, Frida Kahlo, or Kandinsky to follow Michelangelo. All of these
people would exist, but would never be appreciated. It’s only personal opinion, which decides either old
or new is best. Many artists had or have autistic traits, or even would be considered fully autistic by
present-day doctors.
Autism can be a way of examining things in innovative ways. Growing up autistic, one is called many
names: retarded, idiot, freak, special, strange, weirdo, daft, abnormal, nutty, a waste. Almost always,
these names are derogatory. Imagine living years, carrying these and other labels on your back like a
load of coal, damned to wear these words as though they be etched into your face. Imagine physicians,
teachers and other professionals talking about how bad you are, or how much of a victim you are
because you have autism. Time is spent trying to force you to snuff out who you are so you become what
others have in mind for you to become.
Not all autistic children and adults are intellectually retarded. In my opinion, many of them who test in
mentally retarded ranges are not. Autism can actually be a form of genius. Some intelligence can’t be
measured on conventional tests. Brilliance can be undetected by those who are blind to it, especially if it
takes an un-orthodox form. Performing with low scores on standardized IQ tests doesn’t mean someone
is mentally retarded. Some brilliant people with certain types of learning disabilities have difficulties
taking regular tests, or even reading.
Autistic savants generally lack the skills that people around them have easily, yet the savant gift itself
does of course involve intelligence. Instead of saying that the autistic brain is damaged, it would be more
truthful to call it a separate phenomenon that functions differently than a non-autistic brain. Diversity is a
blessing.
Why should not every being be proud of who she or he is? There is something gone awry with a
society that condemns an autistic child to a lifetime of never being good enough. Why must they be
made to work so hard to act like others? Many Japanese are proud to be Japanese, and don’t strive to
become French. A Japanese living in Paris will always look Japanese, just as an autistic person will
always be autistic. If there is an incident of an autistic child being cured, then that child wasn’t purely
autistic in the first place. Some characteristics of autism can be masked over time, but I consider this a
covering over of the truth to suit others, unless it happens naturally.
Autism is usually innate, even if it doesn’t show up until some months or two years after birth. In
studies of autistic twins, mon-zygotic (identical) twins were almost always both autistic. Dizygotic (non-
identical) twin sets contained one autistic child, and one non-autistic child. In classical autism there is a
genetic factor preconceived, perhaps at the earliest stages of fertilization.
There are many pluses to being autistic, which are ignored or not recognized by the people who are
always saying how horrible it is. The attitude of the 1960’s and the 1970’s was to consider autistics
psychotic or brain-damaged, and many were put into asylums. In subtle ways, that attitude creeps into
the present day mentality. The autistic child is known to be a result of organic factors, but a huge amount
of professionals still strive to discover what goes wrong with development, rather than striving to
discover how an unusual mind works, and using information to further appreciate various types of
human beings. I suppose autism can be made horrible. Most things can be made horrible. But it can also
be seen as intriguing, even beautiful.
Self-abuse in autism can be caused by various issues, including a struggle to communicate, striving to
shut away the outside, or inner desperation in sensing the overwhelming negative thoughts of family
members. Many parents of autistic ones are nurturing. Many are not so. Attitude will hugely affect
children who are born profoundly sensitive. Parental attitude will strengthen families if the special child
is accepted and loved. To learn autistic ways will be an education for parents. To bombard the child with
rigid non-acceptance and demands that she or he “conform” or “change” or “behave” or “speak” or “act
normal” is to tell the child with deep intentions that she or he is inferior. That is a grave error.
If an autistic child doesn’t speak, that means not that he has no communication. Many children of
autism need individual education away from mainstream class environments. The teaching must be
loving and respectful. The child has power as a human being. The child will choose what he or she will
or won’t learn. Also, the child has individual abilities like every child has. Autism can be quite
maddeningly contradictory and unequal in terms of ability, such as “splinter skills” in savants.
Autistic children show their raw emotions and their simple honesty, and that frightens others. Autistics
who say what is on their mind are chastised for rudeness. The laws of etiquette of society are illogical to
an autistic person. It isn’t so terrible to have an individual who seems strange and hovers aside from
groups of chatting people. It’s less stressful to go your own way than to constantly fret over how to fit in.
Autistic people can’t dissect ambivalent messages they receive from parents and others, such as: “Be
honest” and “Be polite.” Those two, according to society’s definitions, can be contradictory. The
tendency to take words literally. Problems become easier once they are understood. When the parent or
parents realize that their small one is not going to grow up to be normal, then it can be an adventure to
watch how that child does grow and mature in his or her own way.
Autistic children do need a lot of freedom to be themselves. In a vast world where the autistic is an
alien, all surrounding humans usually expect too much from the unique person. Some people need more
seclusion and a life in protection. If an individual can’t or won’t live like everyone else, she or he is
shunned and condemned. Society denies the autistic person’s difficulties in social life. Autism is both
special ability and disability. If an autistic person can’t work a regular job and needs financial help, no
matter how intelligent or how severely affected that person is, she or he is put through a barrage of
dehumanizing experiences by a government that would rather throw all disabled people away, or enclose
them in hospitals. It is the right of all people, disabled or not, to live comfortably. A government that
ignores the homeless also turns eyes from disabled. Many people seem to want to watch an autistic
person suffer through a job he or she can’t handle, and become overwhelmed by lights, sounds, smells
and unpredictable co-workers. To say the autistic person must change if he is overwhelmed by assaults
to his senses is preposterous. Perhaps instead, he needs a simple, peaceful life with a loving cocoon of
friends or family. He is entitled to happiness.
…to be continued in Volume II of the 1998 Maap.
*******
This letter was written by Jennifer Overton. It is soon to be aired on Canadian Broadcasting Corporation
Radio’s national morning program “This Morning”. Jennifer Overton is a Halifax, Nova Scotia actor
and writer. She also teaches Drama at Mount Saint Vincent University. She is mother to a five year old
high-functioning autistic boy.
Last night I had a dream. I dreamed I was driving along a winding coastal road. All of a sudden a
beautiful boy dressed in black and carrying a violin case crossed the road in front of me, causing me to
stop. I asked him where he was going, and if I could give him a lift. He recited his address, an address
I’d never heard, and got in the back seat. I looked in the rearview mirror and a wave of panic rose in me
at the sight of his composed angelic face, staring straight ahead. In spite of my unease, I knew that I had
to help him find his way home. I began driving. Searching. I woke up, my heart racing.
My son. My beautiful son:
Tomorrow is your fifth birthday. My big boy. My child. Five years old! Dad and I are so very proud
of you. We are madly in love with you, and we wouldn’t want you to be any different than you are. You
are one terrific kid. Very special. And it was exactly one year ago today that you were diagnosed
autistic.
Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much
as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. “Yup,
it’s Autism, and it’s never going to go away.” I remember feeling like all my blood had left my body.
And I remember hearing the cold October rain slapping the window of the white, sterile psychologist’s
office. It’s one thing to harbour nagging suspicions; it’s quite another to hear the word AUTISM from
the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable.
Lifelong.
As much as we love you, it’s been a very difficult year for me and Dad. Who can prepare for such a
thing? It has been a year filled with tears, grief, numbness, panic, desperation, fear, love, determination,
and anger. A lot of anger. Anger at a family doctor who repeatedly dismissed my concerns about your
development; anger at a medical system that put us on fourteen month long waiting lists, and after
diagnosing you, ushered us out the door with nothing more than a wave and a “good luck”; anger that
your neurological disorder is shrouded in mystery and stigma and the medical community offers no
treatment.
I’m angry that I had to spend months reading, researching, desperately looking for information on how
to help you with NO ONE to guide me; I wish we lived closer to my family; I wish there was
something or someone to blame for this; I feel anger toward friends who have effortlessly developing
children and still dare to complain; I’m angry at having been given this huge responsibility; Angry
because I can never rest!’ and yes, I’m angry at you for not giving me back things like hugs and kisses-
my dear, it’s very hard to keep giving when I don’t get a lot back in return. Please try to understand. I
know you can’t help it, but that doesn’t make it easier.
But mostly, I’m angry at myself. Angry and guilty for not having recognized the signs earlier, because
early diagnosis and intervention have proven to increase chances of full integration into society. I wish I
hadn’t hushed my concerns. I’m sorry. I’m so sorry. For not listening to myself. And for not listening
to what you were telling me. And when you were diagnosed, I’m sorry for being sad. I want you to
know that I am not sad about you, or that you are my son. Never. It’s the world: I’m worried about you
in this world.
Autism. It conjures images of a solitary, mute, rocking child. That is not you; it never was. But when
I think back, and look at your baby book, I recognize what I now know to be the early signs. You
screamed at the sound of tin foil being ripped. You stiffened when I held you. Your eye contact was not
good. Instead of pushing toy cars around the living room, you turned them over and spun the wheels.
Numbers, letters, and shapes were your favorite playthings. At barely two years of age you pointed to
a small eight-sided window and said, “octagon”. Before the age of three you were spelling words with
blocks. I recall being in the car and hearing you mutter, “three, one, eighteen. That spells car.” It took
me a while to figure out that what you had done was assign the letters of the alphabet numbers in your
head, and were spelling words with the assigned numbers.
And your memory. Uncanny. Eerie. You sing songs after hearing them once. You remember where
you dropped an elastic three years ago. You remember the minutest detail, and forget nothing.
And yet you show little interest in playing with other children. Kids are loud; they move around a lot;
they’re unpredictable. Not only must it be an assault to your oversensitive senses, but you don’t know
the rules to that game; the steps to that dance. You don’t know how to make a friend. You don’t know
how to play.
Sometimes your literal mind offers up funny, poetic insights. “Mom, the scissors are clapping.”
“Mom, can you put your headache away?” Birds dance in the air, tummies cry, and “the gate is broke-it
has not money in its pockets.”
Dad and I celebrate your uniqueness. But will the world? Will the kids in school call you a computer
with no feelings? A robot, to be turned on in the morning and off at night? Will you ever be invited to a
sleepover? Will you learn to be a friend? Will you ever hug me and say, “I love you Mom.” On good
days I have faith that the world will be gentle. On bad days I just want to hold you in my arms and
shelter you. My mysterious child in black, what is the road you’re walking down? And where are you
bound?
Tomorrow you turn five. We are so very proud of you. You are working hard to learn the life skills
you are going to need. We love you. And we will do everything in our power to help you reach your
full potential and be the happiest person you can be. And while we’re busy teaching you the ways of this
world, you can teach us a lesson or two about love, patience, commitment, and beauty. OK?
Happy Birthday son. And thanks for choosing our road to walk across.
Love, Mom
*******
Volume II 1998 (p. 8-10)
The following is a continuation of the essay by Jasmine O’Neill which was printed in the Volume I,
1998 newsletter. We regret that we mistyped the title of this story in Volume I. In that same segment,
we also mistyped the second sentence. It should have read, “We are separate, but equal.” We apologize
to Jasmine for our oversight.
SEPARATE BUT EQUAL
by Jasmine Lee O’Neill
Part II
Some people with Autism struggle a lonely, poor life, not assisted by the groups which vow to assist.
There are people living in all nations who just can’t cope with the way the rest live. So they need their
own tailored lives. They have a right to choose their lives, or to be sheltered by others who know and
understand them. It seems those whose parents aren’t extremely rich are doomed because nobody else
cares. Money has become a weapon to powerfully wield or to deny rights to those who haven’t much. If
they can’t fight for themselves, who will fight for them?
Autism is not the hell. The hell comes from a lifetime of outsiders who try to force their customs and
ideas upon the disabled person, as if to point out that the disabled person has no ideas of her own.
Society views autistic people as freaks who are less than the rest, who aren’t entitled to what the rest are
entitled to. Autistic people are thrown away in mind and body, or they are pitied. Those who think they
know say how dreadful it must be to have Autism. Not all special people are happy, but not all are
unhappy.
To feel encapsulated in your own inner home is a sanctum out of chaos. Autism’s enclosed world isn’t
an automatic prison. It can also be made into a haven. To control this haven, and include it in your own
strengths is a lovely experience. Emotional instabilities can come about from being tormented because
you’re very unusual, but there are also people who have emotional problems and aren’t at all autistic.
Instead of trying to make the autistic person acceptable to others in order to escape the torments, why not
reprimand the tormentors?
People of Autism are judged more than others. They tend to be a puzzle, and their contradictory
characteristics need to be understood. Everyone, especially health professionals and teachers, should
have some idea what Autism really is, not just know the outdated myths. Most human beings know what
blind means, and Downs syndrome, so why not become better educated on Autism? Autism is very
complicated, and it does affect all aspects of a person, so it may be difficult to understand, but that’s not
a sufficient excuse for an educated human to know almost nothing about it. Individuals whose careers
are people-oriented, such as doctors, clergy, and judges, should at least have a bit of understanding of the
autistic mind. One never knows when one will come across an autistic person. Kind understanding will
lessen harm to both the autistic person and to others involved with him or her.
General people don’t even know usually that an autistic person can perhaps drive a car, or that being
severely autistic isn’t synonymous with being stupid. Many severely autistic people have areas of able
or extraordinary gifts and functions. One person can be both “high-functioning” and “low-functioning”.
These two terms are often mis-used, and “able Autism” is often mis-understood. An autistic who speaks
can be severely affected by other aspects of the condition. And an autistic who doesn’t talk can be
highly intelligent. This is proven by many examples of non-verbal people who suddenly have access to
other forms of communication, such as Sign, or writing, or Facilitated Communication. Many of them
begin to pour forth lovely, original language, and poems on complex topics. This point is also evidenced
by the fact that the author of this essay does not speak.
There is too much emphasis on bringing children OUT of Autism. Rather, try to discover the
mysteries of living IN Autism. What is right for one human isn’t always right for another, so it’s quite
important to get to know intimately the autistic one in your family. It is very wrong to guess about
feelings and thoughts of one who doesn’t communicate as fully as someone else. The autistic one has
feelings (sometimes passionate), and desires, and fears, and questions, as others have. There probably
are even more of those that have others, since the autistic is usually quite puzzled or astounded by the
actions of the people around her or him. To appreciate autistic qualities in somebody is to grow closer to
that person through gentle acceptance. To show interest in how that person experiences and thinks is to
acknowledge that being as a precious individual. This is what all special people need.
If parents praise their so-called normal children for wee tasks and discoveries, why can’t they also
show excitement for the autistic child, who despite isolation, is also quite sensitive, and instantly knows
when he isn’t highly thought of? Parents should be proud because there is a distinct personality in each
autistic person. Take pride in the child for who he or she is truly is, rather than only when he or she
performs as others dictate.
Some people just don’t have a burning to be like others. To provide an autistic child with a structured
education and a secure, loving home will make him feel free to be himself. Then he will understand in
his own way that he is cared for, loved, appreciated.
Autistics will be on the outskirts always in some way. Many of these shy, sensitive souls like living
within themselves. In the examples of autistic artists, they naturally have the sensory experiences
necessary to create rich, creative, original pieces in music, painting, sculpture, and poetry. Creativity is
evident in many forms. It is not defined by narrow terms.
To live in touch with your deepest part is also a spiritual happening. It is also a characteristic of
Autism that is very lovely. It is wonderful to feel safe in your inside-you home. That security is real,
and it provides fortitude. When adversity threatens, the strength from within works to help focus and get
through the storm. Many autistic people are very strong-willed, as well as very honest. High
intelligence is often manifest in single-minded focus. Autistic people most likely have intelligence that
isn’t tapped.
All of that can work with a person in unhappy situations. It’s not a crime for an autistic person not to
comprehend the other world outside. Authority tries to convert the autistic one into what others are. At
the core, that’s impossible, since Autism is a literal brain difference. What is worse is authority trying to
shame the autistic one into making him dislike himself. That is a form of abuse. Authority needs to
reform itself into believing that people will be as they are, and that difference can be neat.
Any self-abusive or clearly negative aspects of Autism can be worked through, as long as the rest is
celebrated. There is actually much more good than bad. Plus, the definition of good and bad is an
opinion.
Consider much worse negative characteristics of other people such as rapists or murderers. Think of
Hitler who exemplified qualities of evil and pure hatred. An autistic isn’t trying to be a source of
anguish to anyone. Even when an autistic child or grown up is in the center of a wild tantrum, she is not
being evil.
Many texts on Autism, as well as some parent and therapist reports, speak of these children as though
they are plagues whose purpose is to destroy their families’ lives. That attitude, not the phenomenon of
Autism, is destructive.
Throughout eras of history, autistic souls were treated as though they were hideously evil. Even in the
present time, some are still existing, forsaken in institutions where vicious experiments are done upon
them, and this is known and hidden by the governments of so-called civilized nations. The clusters of
autistic characteristics of behaviour are indeed unusual and do stand out. I, as a girl with Autism, prefer
to view these as my own badge of individuality. I don’t care what others think. I don’t set about to harm
anybody. If others have a problem with the real me, then I refuse to compromise myself or lessen myself
to please them. They’re not going to change to please me. Why should I change to please them?
Children are not born to please parents. Neither are they born to fulfill parents’ un-fulfilled dreams.
Children aren’t projections of their families. In Autism, people complain of the child as afflicted and
bringing shame to the family. It’s seen as a tragedy that the child will never be what the parents thought
he or she would be. Autism is a special personality whose occurrence is nobody’s fault. In blaming the
child for not being able to become what the parents couldn’t become themselves is only an excuse... Of
course, it’s okay to feel sad to learn that your child is so very different, and will perhaps be unable to do
what others do. But, beyond that sadness can lie new adventures. Life has taken a fresh path that wasn’t
expected. Autism can be a way of challenging materialistic values where people are judged by their
careers and university degrees. Autism goes beyond that. If an autistic young adult never becomes
successful in an important career, so what?
I’ve read of some parents who have left their guilt and rage and denial behind, and now they truly
accept their special child and even have joyful relationships with them. Autism can be seen as either a
curse or a blessing. It is most crucial that the autistic one himself or herself feel content.
People who are deaf and communicate in Sign often feel a special identity with one another. The deaf
have a distinct culture and language, separate but equal to the rest. Many have created communities of
living. They are proof that speech isn’t necessarily the best form of language. Non-verbal autistic
people can find their own type of communication which suits them best. They need freedom to choose
and have control over some things in their lives. As in the culture of the deaf, unique lifestyle is
celebrated. This can work with autistic people. There are less autistic people than deaf people, yet they
have as much right to feel joyous in life and to live free of endless ridicule. To claim many are too
retarded to comprehend or desire this is a miserable excuse and a lie.
They do live in their own special worlds, and those inner islands can be rich and exciting. Nobody on
the outside has the right to judge another’s peaceful way of life as wrong. I’m talking of a special type
of person cast out only for being different.
People need to look more than with only eyes. They must feel with hearts, not only fingers. They
must take the time to grow close to the autistic one so only then can they decide if that special person’s
life is so terrible it must be altered.
Others could learn much from an autistic person’s innocent, pure way of seeing things. I believe that
Autism is an unspoilt version of humanity, full of true un-refined emotions and so many mysteries.
If people can accept mysteries in their religions, why can’t they accept mysteries present in one
another? If they can accept people of different colours and nations, then hopefully they can accept
autistic people as separate but equal.
*******
IMAGINATION
by Angela Rose Barricklow
Cats in top hats,
Hares combing their hair,
Bees as boxers,
Skunk train conductors
Ballerina buffaloes and more!
Just step right up and get your ticket to the most crazy place on Earth, the imagination.
Oh, and just one more thing, don’t mind the monkey, she’s only asking for your tickets.
*******
Gather Stars For Your Children is available in CD or cassette. These songs, written and performed by
Jeanne Lyons, are individuals with social and speech challenges and are designed to enhance social
skills and foster a welcoming attitude. When I listened to this tape, I laughed and I cried. My two
ffavorite songs on the tape are “Perseveration Station” and “Personal Space Invader.” I congratulate
Jeanne Lyons on her creativity, ingenuity and sensitivity. To order your copy or copies, write to Jeanne
Lyons, P.O. Box 72857, Marietta, GA 30007.
*******
By Carol Rudd
********
A poem…
Melody
******
This has happened to me several times. It seems sometimes when I receive quiet time by the still
waters, I find myself, usually alone, walking in silence near a stream, brook, or small river. The colors
and sounds alert me that I am in a Holy place, I am usually surprised because I didn’t necessarily come
to this place thinking I needed to go talk to God
*******
In autumn 1997, the Foyer Universitaire of Geneva has asked me to give a little recital of piano. I have
played Bach, Handel,, Mozart, Haydn, and finally Schubert. Everybody was delighted.
As a reward, I have asked if I could do money rising for the autistic children, because I did not want
anything for myself.
The students of the University and some other people were unfortunately not very rich, so it gave only
180.-Swiss Franks.
But in 1998, I have given another little recital on the 26 of April in Fribourg. On the program was also
printed: “collect for the autistic children”. The more elderly people were fortunately richer, so it gave us
370.-Swiss franks. Everybody was delighted as well.
On the 10 of May of this year, we had our general assembly and picnic of the Swiss parents association
and the children were there too.
I played for the mothers this time, because it was mother’s day. I have tried to play on an old piano
and it was absolutely revolting. The sound of the piano was very good but two keys got stuck every time
I touched them. I was very annoyed because of the mothers who have been waiting for that little recital
for a long time so, I did not want them to go back home disappointed. Fortunately, I have discovered the
problem during the warming up, because otherwise the mothers would have been surprised every time I
stopped and started swearing.
But I have managed to play something though. During the recital my mother stayed next to the piano
while I was playing and she lifted up the keys that stayed stuck as soon as she could. As I played some
music very fast she had a hard job doing this. Everything went all right. The mothers were very touched
and congratulated me and thanked me because I made it although the piano had a problem. That was a
big step forward for me because a few years ago, I would have refused to play at all and the mothers
would have been disappointed. From that recital I have learned that, as a pianist, you have to cope with
any piano that is under your hand as good as you can, even with a piano that has key problems. It is rare
that a piano is impossible to be played on, there is always a solution, but I am sure a professional would
have slammed the door and left. So you see, I do things for other autistic children because I was lucky to
be able to do so.
Many greetings to all readers of MAAP from Matthias Fischer.
********
Volume IV 1998 (p. 5)
********
by Gregory Gnau
*******
It’s been quite an interesting year for us. As Guille turned 15 and started attending a large public high
school with a population of over 2300 students, as his parents we reached new heights of advocacy in
attempting to get his individualized education plan to address his social-emotional needs. After being
turned down by county mental health, who disqualified him from counseling services because he was
“benefiting from his education,” we sought an independent psychological assessment from a local
psychologist with experience and expertise in autism and Asperger syndrome. He confirmed our position
that Guille needs to be taught social skills explicitly by a counselor who can help him process his
conflicting feelings about himself and his difficulty “fitting in” and making friends. Meanwhile, we
have been excited and inspired by the work of Tony Attwood, whose book Asperger’s Syndrome: A
Guide for Parents and Professionals is full of practical ideas. (I flew to Portland in December to hear
him speak at a Future Horizons workshop on social skills, and he is a great speaker!) So when Guille’s
IEP Team was faced with the task of writing social-emotional goals and objectives, and the school
personnel admitted that they really didn’t know how we rose to the occasion and wrote them ourselves.
The team accepted our goals and objectives, agreed to psychological services, and the last hurdle is to
decide on the service provider (we are insisting that it be someone with experience and expertise in
Asperger syndrome and autism). During the last six months of negotiation for services, we have been
paying privately for counseling for Guille, and for the most part, he appreciates having “someone to talk
to other than my parents” about feelings and social interactions. We’re hoping to narrow down the focus
to a few specific friendship skills, and we’re hoping that he continues to cooperate when the therapy
starts to get challenging (like a typical teenager, he suspects and resents adults who try to tell him how to
run his life!)
The other exciting development has been Guille’s cartooning. Animation and cartooning have been a
strong interest of his for quite a few years, but when his high school resource teacher suggested that he
try to get one of his cartoons published in the school newspaper, Guille became suddenly inspired and
prolific. So far, he has completed 37 cartoons (since he started school in August) and two of them have
been published in the quarterly school newspaper. His goal for 1999 is to complete 100. The most
amazing thing to me is the content of the cartoons; they all depict social interactions between teenagers
in high school, highlighting moments of awkwardness, rebellion, insecurity, and other typical emotions.
The situations seem to mirror what he’s observing, thinking about and/or struggling to understand. The
irony is that he is able to observe and comment on situations that are so very difficult for him to actually
participate in.
I am sharing the social-emotional goals we wrote, in hopes it might be useful to other parents and
professionals when facing the same task.
The new Maap newsletter format is very spiffy! Have a great new year!
Best Regards
Denise and Bob Gomez
******
******
Flower Eyes
By Sue Norris
*******
And when you set sail this day to a far away shore,
Remember how special, how precious you are.
When storms toss the sea of Life, and you’re losing your way,
Steer your course by the knowledge you’ve gained here today.
********
The following poem is reprinted from “The Autiser”, Volume 9, No.1, 1999. “The Autiser” is the newsletterA
Australia. The poem’s author, Pip Townsin, writes to us at Maap, saying, “The poem was wwhen I hit rock b
happy to tell you that our situation has improved for the time being—but, aaware, life is a roller coaster ride!”
Where are you now?
© Pip Townsin
*******
MONDAY
by Beth Moreno
Monday
I wake up in
A daze and I wonder
Why do I have to go through this
Again?
A thought from Susan Moreno: If I could write such lovely poetry, I would have written a poem that had thr
would have been the child him/herself, whose own will to try hard completes the sculpture.
********
Dear Susan,
I wanted to share the attached writing about my daughter. If you feel it’s worthy of printing, please do
so.
We had taken our daughter to a doctor in another town who was administering Secretin. The
gentleman who wrote the attached was in the doctor’s waiting room. While we didn’t—and don’t—
know him , he recognized us, as he works with a mutual friend. Before we first took her to this doctor,
we had asked her if she knew anyone from that town who had some knowledge of him. The person who
knew of the doctor was the man who wrote this essay.
He gave our friend his writing the next week, and she faxed it to us. He wanted us to see it before he
would show it to anyone. I believe he wrote it for a church bulletin (he attends the same church as the
doctor!).
It certainly made us pause, as I remembered how frazzled I had felt in that waiting room, trying to keep
my daughter from taking ornaments off their tree. Sometimes you have look back up and take a breath,
“Anonymous”
PAYTON’S GIFT
As I watched Payton in the doctor’s office her mother followed her around the lobby insuring the
safety of her 4-year-old daughter. Payton would go from one area to the next making noises of little
more than grunts and sudden small cries. Payton’s father got her attention with the Christmas tree
standing in the corner. “Look Payton at the Christmas tree. “Can you say tree?” With just a little bit of
imagination, I think I heard her repeat to her father, “tree.”
You see this small child is different than most. Little Payton is autistic.
I couldn’t help but notice as a little gold ornament covered in glitter caught her eye. She took the little
round ornament in her hand without removing it from the tree and began to rub her fingers over the gold
glitter. It was at that moment this little blond haired child became silent. She gazed with tremendous
deep thought. The texture of the glitter across her tiny fingers, the beauty of the reflective gold color to
her eyes, the perfection of the simple round ornament in her hand, the tranquility of the moment was
inspiring.
You know I have been there before. Stopped in silence, gazing into nothing, and just dream of the
simple things that God has made. It somehow creates calmness in the soul. I don’t believe there is
anything more beautiful than that, but God himself.
God has gifted a child to teach and remind us of what we should already know and do.
Take a quiet moment and just dream of something simple, and do it often. Then thank God for it.
********
The following article is from the “Autism Society of Indiana”, Volume 2, Issue 3, Winter 1996.
********
Volume II 2000 p. 10
Editor’s Note: This came in my annual Christmas letter from Lee Warren. She is a
wonderful, brave, single parent who lives in Illinois. Her son, Warren, is 21 and lives
in a group home. She is working towards new residential alternatives for Warren and
others in her area.
We are not sure of the source of this poem.
Celebrate with me
Rejoice in who he is and who he will become.
But…forgive me if, from time to time,
I shed a tear for who he might have been.
A Parent
*******
Volume II 2000 p. 17
Editor’s Note: The following is an excerpt from a series of poems by Rachel Vivace, a
24 year old with Asperger’s and mother of a 4 year old, Matthew, with autism and
whom she calls “Heaven’s Joy.”
LIKE A BUTTERFLY
Like a butterfly
For freedom I am reaching
Flapping towards the sky
Although you may not see
Or even hear my voice
Know that I’ve no choice
But I must be
Like a butterfly.
Stared at like wondrous piece of art,
Assumed in a cocoon you cannot part,
And all you see is emptiness within,
And not the thoughts inside my head which spin.
Although I may pass by you in the hall
And talk in a monotone or parrot call
Or bang or shake my head if I’m in fear,
And if I speak in silence, do you hear?
And though I may not recognize your face
And retreat from you while wanting your embrace
Know inside these walls that I still make
Through self-contained, I yearn,
And long, and ache.
Fragile, delicate-like china, breaks –
Trapped in all the rules that this world makes
But instead of letting difference divide, let’s embrace them, and let’s spread our wings
and fly.
*******
Dear Maap,
This is a reflection told from the point of view of the child about school and to his school. I don’t want to
down the process of IEP’s as they are crucial, but through my experience, I have realized that some
educational staff get so tied up in the theory of it all, and forget that there is a child there wanting a bit of
one-on-one, and put the theory into real practice.
*******
Volume III 2000 p. 14
*******
So walking in silence
Avoiding the violence
I try to understand.
*******
Volume IV 2000 p. 8
MISSING NIXON
A commentary by Jerry Newport
It’s gotten that bad. I actually miss Richard Nixon. I never voted for him and have spent most of my
adult life as a Democrat. But I miss Tricky Dick. I miss his five O’clock shadow and the geeky way he
insinuated his face into the upper right-hand
corner of my TV set on the day of the first moon landing, to make some silly Presidential announcement,
as if he could upstage Neil Armstrong.
I miss his Checker’s speech and the Moscow kitchen debate. I miss the feeling that like me, Richard
Nixon seemed to wonder if anyone liked him or just tolerated him because he was so productive. I miss
Nixon because for all of his Kennedy-phobia, he knew, unlike some people today, that winning isn’t
everything. Twice, Richard Nixon put our country above his own needs. He died a true American
patriot.
In 1960, albeit after hearing the riot act from President Eisenhower, Nixon did not contest massive
voter fraud in Cook County, Illinois. In 1974, he resigned. He could have possibly survived an
impeachment. Instead, he had the grace to resign. By the time you read this, we should have a
President-elect, but after the way both candidates stimmed over the Florida race, will either have it in
him to act Presidential?
I hope we don’t have four years of gridlock, but I can tell you one thing. If the autistic population had
run this electoral show, the problems would never have happened. If we ran the elections, there would
be uniform procedures, unambiguous ballots and no forecasts anywhere of any state’s winner until the
entire nation had finished voting.
That is the bottom line. The integrity of the process is more important than Bush, Gore or whether the
Secretary of State of Florida can trade in her frequent flyer miles for votes. In times like this when
neurotypicals get lost in their ambitions, the autistic talent for ruthless objectivity with no regard for
social or political context should be allowed to come to our nation’s rescue.
We may have here, a full-employment program for people with autism; in the office of every Registrar
of Voters in America. After all, many of us like to do the kind of work that most people find boring and
we do it right. We need to show that the most frustrating traits of autistic people can be advantages. I
hope we do a better job of this in the future. Meanwhile, time is the greatest judge. For all of his
mistakes, Richard Nixon will be remembered as a brilliant international statesman. And I hope that for
all of our idiosyncrasies, my peers will someday be more known for the contributions we make to an
orderly, just society where every vote really counts.
You may contact my attorney, Ken Weinman at 310:312-1004 to book me for presentations.
e-mail: GeraldWhaleman@Gateway.net
********
Volume IV 2000 p. 20
The following poem was taken from the October 2000 PDD Network Newletter , by Stacy Hultgren.
Say!
I almost like these IEPs
I think I’ll write 6,003!
And I will practice day and night
Until you say
“You got it right!”
*******
Volume I 2001 p. 20
Here is a poem that truly embodies the theme of our conference for this year:
********
Volume II 2001 p. 7-8
I am one
I am one mother
I have children with Autism
That does at times make me feel like the only one
So I reach out
I talk
I educate myself
I grow
And become more powerful
I am one
When it comes to the doctors
Who do not listen to what I have to say
When my child does not speak
Does not look
Does not react
I am one
Who says LOOK, LISTEN, DO
And they look and listen and do for my child
And the power grows
I am one
When it comes to the school districts
that do not listen
Who see my child as a dollar sign
Who do not think they will
accomplish much in life
And they expect me to lie down
But I stand up
And I raise my voice
And I fight for my child who has no voice
And I win…a victory for one
And I tell other parents to do the same
And the power continues to grow
I am one
In the school halls
With the staff that educates my son
And we work together as one…
for the betterment of him
And I speak to the other staff members
And educate the educators
I, as one, break down the walls
of fear and ignorance
And they begin to see his brilliance
And they begin to open their hearts and their minds to his possibilities
And they empower my child
And the power resonates to others
I am one
In the mall
In church
On the street or at the restaurant
When people stare
When the whispers are too loud
Who wonders about this child of mine
And instead of folding up
I open myself to them
Educate them and let them know to not have fear
But understanding and empathy
for a child who cannot control this
And the power radiates
I am one
Who subjects my family to research
to help others
Who speaks in classrooms
Who gives up time to myself
To the betterment of my children
To speak up
To speak out
To gain control of what is uncontrollable
To have others do the same
And the power touches others
I am one
Who looks to give support and get support
And there are others who are one
And together we are many
And we share a common bond
A common war
A common cause
And we strengthen in our numbers
And I no longer feel like one
I am a mother
I have children with Autism
And I am powerful
*******
~~~~
NOTE: The story you are about to hear is true. Only the names have been changed to protect the guilty.
This happened in February 2001, not in 1960.
In Room 135, the Autistic Room, in Beckley School, the aides and teacher do not know much about
the autistic spectrum. No one knows how to treat them, and as a result, the kids are so angry that they
break down by the end of the day. The first
torture is that Room 135 is right by Room 133, the Music Room, and so the autistic people are forced to
hear students filing in and out and hear tinkly xylophones and beating drums all day. The teacher in
charge of Room 135 refuses to keep the door closed because autistic children should get used to noises
of the world. Here is one horror story from Room 135:
“Kimmy and the Social Skills Misunderstanding”
One Friday the teacher of Room 135, Mrs. Wright, called in sick. Therefore, Mrs. Smith was asked to
be the substitute teacher until Mrs. Wright could teach again. One of the students, Kimmy, was excited.
She always liked new people to come inside the room because she wanted to play with them. Normally,
this is a VERY good thing for an autistic child. But not in this classroom. Kimmy’s aide, Mrs. Parks,
was late that day and hadn’t arrived yet. Mrs. Parks NEVER let her play with guests. The reason: The
school wanted her to learn INDEPENDENCE, which is stupid because the average autistic person is
born independent, and should be taught how to be with people first, not to be independent first.
So, when Kim saw Mrs. Smith, she said to her as polite as she could, “You play with Kimmy? You
play with Kimmy?” (Although she was 11 years old, she was still learning how to talk correctly.)
Mrs. Smith heard Kimmy and, seeing no one was stopping her, said she could play with her during
Free Time. “We gonna have FUN!” Kimmy said back.
Free Time came and so Mrs. Smith came to play with Kimmy. Kimmy said, “ You help Kimmy with
puzzle? You help me?” Mrs. Smith, having been educated and knowing a lot about autistic people,
decided to get theraputic when helping Kimmy. She had Kimmy touch the curves of the pieces of the
jigsaw puzzle. Then, while she had Kimmy’s hand on the puzzle, she said, “Curve.” Kimmy, having
mild echolalia, said “Curve,” back to her. Then they slowly starting to solve the puzzle. During the
playing, Kimmy said, “ We gonna have FUN!”
She also showed almost every normal social skill the typical child would have.
Then as if on cue, Mrs. Parks, Kimmy’s aide, bustled into Room 135 and said to Mrs. Smith, “I’m
sorry, but you cannot play with Kimmy. She has to learn independence.” Then she said to Kimmy,
“NOW READ YOUR SCHEDULE, KIMMY!!!”
But Kimmy immediately deteriorated. she said, “Uh. Um. Uh Um,” and then said her schedule in a
soft, lazy, mumbly voice, just like many autistic people behave. She was rebelling! She was pretending
to be autistic!
“KIMMY! NO MURMURING AND MUMBLING! USE YOUR GROWN-UP KIMMY VOICE! IF
YOU DON’T STOP MURMURING YOU LOSE TWO POINTS!” screamed Mrs. Parks in the same
volume.
Kimmy stopped talking. She lost two points. Now in this classroom, every Friday the class had a
weekly party before the end of school, which consisted of corn dogs for everyone who attended and the
people who attended the party took a vote on the movie they would see. However, if you didn’t have
eight points for the week, you couldn’t have a party. The people who couldn’t attend were forced to stay
isolated behind the curtain in the classroom (which was specifically used for that reason), and since
Kimmy had had 9 points and had lost 2, making her only have 7, she missed the party. The aide told
Mrs. Smith that this was the 1st time Kimmy ever missed a party, all thanks to her. Kimmy sat behind
the curtain with the rest of the class for 45 minutes, confused as to why she couldn’t attend the party,
while the only boy who had enough points to attend refused his corn dog and spent the entire party under
his desk. No one watched the movie.
The moral of the story: “Autistic people may sometimes be misbehaving because of their disability,
but they may be misbehaving to defend themselves from the cruel world. Therefore, treat your autistic
child nicely and he may be less autistic than before.”
THE END
~~~~~~
Volume III 2001 p. 18
Editor’s note:
The following poem was written by one of the women who works in our Maap office, Robin Klaubo.
She composed it and put it on our office door to remind us of our camaraderie.
A GARDEN GATHERING
by Robin Klaubo
Why do women gather?
Out of want, or out of need?
A little bit of both, I’d say,
Like planting garden seeds..
Having problems?
Let’s talk it out;
you’ll find a new way to look at it,
no doubt.
*******
Volume IV 2001 p. 17
“Who I Am”
by Terri McPherson
I am not anything you can see with your eyes or touch with your hands.
Should you judge me by that criteria, you will never know me.
Those who hear the voice of their soul, recognize the song in mine.
They do not stop at the front door and judge me by the dwelling in which I reside.
With a humble sense of honor, they knock upon the door and ask to come in.