When our daughter was born, we thought that she might be deaf, or at least hard of hearing. We immediately asked her pediatrician to check her for hearing problems. Her pediatrician said she was fine.

THE PEDIATRICIAN SHOULD HAVE SEEN THAT AS A POSSIBLE WARNING SIGNAL OF A PROBLEM, EVEN POSSIBLY INFANTILE AUTISM, SOMETHING THEY SHOULD LOOK FOR IN NEWBORNS.

READ MY LETTER TO THE SCHOOL DEPARTMENT (page-4)

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As time went on Samantha seemed to progress from birth normally. She waddled and toddled and walked at 12-months. She babbled some and was interested in everything that was going on around her. Her babbling turned to words and she could identify colors and objects. She got really sick at 18-months old and was hospitalized with a fever of 104 that took several hours to break. After that she acted burnt-out. It was like her little brain was fried. She went back to babbling and her sleep was way off normal. She could no longer remember her colors and could not count to ten any more. We treated it as if she was having to start over and accepted that. We had talked to other parents of brain injured children and the Doctors never suggested Autism. It was three1/2 years later before she was diagnosed with Autism.

DON'T MAKE THIS MISTAKE. WHEN IT LOOKS LIKE THERE
IS SOMETHING WRONG, ASK PLENTY OF QUESTIONS. Back to Homepage

In the spring of '96, when we were teaching Samantha at home, they wanted us to take Samantha to the school that she had attended the previous year. At the beginning of the school year, in fall '96, Samantha's school decided to take it upon themselves to change the way that they were teaching her. They didn't think that it was important to contact us and get our permission to make a change that should have been made at an IEP. The changes that they made in her routine caused her to quit wanting to go to school. We tried for several weeks to get her to go to school, but Samantha keep ntrying to keep us from taking her to school.

We finally had the teacher come to our house and when Samantha and the teacher were together in the livingroom Samantha went over to the teacher and started to scream at her and tried to remove the teacher from the room. This went on for a few minutes until Samantha's mother and I, (her father), asked the teacher to please go outside with me to discuss why Samantha was acting out against her. That is when we found out about the changes at school.

In the days following the meeting with the teacher at our home, Samantha didn't sleep for more than five days and didn't eat anything for three of those days. She looked like a zombie. She lost about seven pounds in the three days she did not eat and Dana had to hold her for hours on end to keep Samantha from going into fits of rage. Samantha had taken a turn for the worse for the first time since being diagnosed Autistic. We held her while she cried for weeks. It took her 6 months to get over the ordeal and set her back more than a year.

As of 3/99 Samantha goes to school for two hours for socialization
and we still home school her. She uses sign and talks a lot now.

BELOW IS A PICTURE OF SAMANTHA ON DAY THREE

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Autism is a severely incapacitating life-long developmental disability which appears during the first three years of life. It occurs in approximately five out of every 10,000 births (figures are currently being revised) and is four times more common in boys that girls. It has been found throughout the world in families of all racial, ethnic and social backgrounds. No known factors in the psychological environment of a child have been shown to cause Autism. It has been believed that the symptoms are caused by a physical disorder of the brain (it is now the belief of some researchers in England that they have found a genetic link to Autism-see 'LONDON TIMES, JANUARY 11, 1998') AND INCLUDE:

1. Disturbances in rate of appearance of physical, social and language skills;
2. Abnormal responses to sensations. Any one or a combination of sight, hearing,touch, pain, balance, smell, taste, and the way that a child holds their body is affected;
3. Speech and language are absent or delayed while specific thinking capabilities may be present. Immature rhythms of speech, limited understanding of ideas and the use of words without attaching the usual meaning to them is common;
4. Abnormal ways of relating to people and things. They do not respond appropriately to adults and other children. Objects and toys are not used as normally intended. Autism occurs by itself or in association with other disorderswhich affect the function of the brain such as viral infections, metabolic disturbances, mental disturbances, mental retardation and epilepsy.

On IQ testing, approximately 60% have scores below 50, 20% between 50 and 70 and only 20% greater than 70. Most show wide variations of performances on different tests. Autistic people live a normal life span. Since symptoms change, and some may disappear with age, periodic re-evaluations are necessary to respond to changing needs.

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exerts from 'AUTISM', by Lorna Wing M.D., 1973

Autistic children look normal and healthy (providing that they have no associated handicaps such as spasticity) but their language and social development is likely to be several years behind their physical age. However, their skills with tasks which do not need language may be at their age level or better. Most workers who have followed up these children have agreed that they do best if they are able to attend school and receive specialized education. Under these circumstances many will need sheltered work but some will be able to find open employment is a suitable occupation with a sympathetic employer. The level of occupation depends upon each adolescent's special skills, and how badly he/she are handicapped. The latter can vary from very severe to the very mild. However, although each person must be considered as an individual, they do have certain problems in common, which affect their employability. These can be listed as follows:

1. Their inability to understand and use language except on a simple concrete level prevents them from doing jobs which involve more that the minimum amount of talking or reading.
2. They have difficulty in understanding complex instructions. Given time they can learn rules or routine procedures and once learned they will carry them out exactly. They are not able to manage if procedures change or if many decisions have to be made.
3. They cannot do work that needs imagination, although they may be quite inventive in mechanical or electrical trades.
4. They are often unable to find things out by asking questions. Therefore, when they start a job they need someone to take a special interest, to show then the bathroom, how to obtain a meal in the cafeteria, what time to finish work, etc.
5. Some of them are very sensitive to loud noises and bright lights, and this may effect employment.
6. Most autistic adolescents who are considered for work tend to be gentle, placid and even tempered. However, if a complicated situation arises in which the routine is upset and swift action is needed they may become extremely confused, agitated and perhaps irritable.

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DON'T MOURN FOR US

by Jim Sinclair

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toranto and is addressed primarily to parents.]

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle. But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:

Autism is not an appendage

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say, I wish my child did not have autism, what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead. Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Autism is not an impenetrable wall

You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and then you tell them that we can't relate.

Autism is not death

Granted, autism isn't what most parents expect or look foreward to when they anticipate the arival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possibilities, it is possible to form to the kind of bond the parents had been looking foreward to.

But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--

but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked foreward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recgonize that the thing you looked foreward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died. You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you. This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, ge mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world? Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go. After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it." If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

Jim Sinclair.

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Somehow we gave birth to a child from the land of 'AUTISM'. A native, Samantha acts as a representative, an ambassador of sorts. The American Heritage Dictionary identifies an ambassador as an authorized messenger. Samantha performs these duties beautifully. Samantha has all the cultural nuances that the people of 'AUTISM' are famous for. Samantha knows that 'AUTISM' etiquette demands that you; never quite look your companion in the eye, that you be unpredictable but demand predictability, and that you never be the first one to say hello.

Living with an ambassador requires diplomacy, true effort to understanding differences and being open-minded. That makes us ambassadors of 'NORMAL'. To the best of our ability we try to show Samantha the whys and hows of our life and culture with us. But Samantha's everyday behavior, so different from that of 'NORMAL', is often puzzling and seemingly bizarre. Like many foreigners, she stumbles over our language. She often repeats words in an effort to make sense of our syntax. Many times she uses phrases to stand for a variety of meanings in order to communicate. More often than not, she is confused by our table manners and does not understand why we sit to eat, or why she must use utensils. In her country the majority seem to prefer finger foods.

Like many people of dissimilar background who unexpectedly find themselves flung together, we have our battles. We want her to respect our ways, to compromise. We experience the stress and tension of frequent misunderstanding with her. We do our best to communicate. We offer tricycle riding, talking and reading. She offers jumping, giggling and squinting. Samantha has taught us that beauty truly is in the eye of the beholder. We now see sights differently. We now point out animals and signs along the roadside. Dining out is passe'. Intimate in-home dining is the 'AUTISTIC' thing to do, even McDonalds is out of the question.

We have had to rethink many of our 'NORMAL' practices and make decisions about conserving or staying true to our beliefs. We also feel that as a good host it is important to impart some of our teachings to Samantha. Many of Samantha's people participate in activities previously unknown to us, or you. They have introduces creative new hobbies such as lint collecting, hand flapping, string twirling and pace walking (and pace crawling), which is similar to race walking but with an extremely limited distance. Physical activities, such as running, jumping, and bouncing on beds are all very popular. Dancing is typically seen as a solitary act, The majority of people from 'AUTISM' tend to be introverted and not very verbal. Many do not speak at all. Marriages and children are not completely unheard of. Like people of all races and creeds, there are the few who live outside the mainstream and may pursue relationships and choose to procreate. They are the minority.

Our native, who is still very young, is more typical. She prefers solitary dancing and pace walking and pace crawling without conversation. She likes animals (cows, horses, jack-rabbits, deer) as well as Pepsi and cheese puffs and riding in Mom's car. We have had some influence. But we do not think she will marry or have children.

She is totally dedicated to her mission. She is here to teach and to share her message. Her message is one of understanding and acceptance. So we will continue to interpret and try to understand. Perhaps one day the people of 'NORMAL' and the people of 'AUTISM' will learn to live together without conflict or difficulty. We can work together and hope.
edited by; Larry Guggemos

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IT APPEARS THAT IS MIGHT GENERALLY BE BELIEVED THAT SAMANTHA'S TRANSITION TO SCHOOL COULD BE AS SOON AS A COUPLE OF WEEKS GIVEN THE SHORT TIME THAT SHE NEEDED TO MAKE THE ADJUSTMENT THE FIRST TIME SHE STARTED SCHOOL. WE FEEL THAT THAT KIND OF THINKING IS TOO PRESUMPTUOUS AND MIGHT HAVE BEEN ONE OF THE FACTORS THAT CAUSED SAMANTHA TO NOT WANT TO BE AT SCHOOL LAST YEAR.

LAST YEAR THE SCHOOL SAID THAT CHANGE WAS GOOD FOR THESE KIDS. I HOPE SOMEONE HAS TURNED EVERYONE, WHO THINKS THAT WAY, ON TO A LITTLE BIT OF REALITY. NEW, IF INTRODUCED CORRECTLY, IS GOOD, BUT ABRUPT, UNPLANNED CHANGE IS NOT GOOD FOR SAMANTHA OR ANY AUTISTIC PERSON.

THERE WILL BE NO CHANGE OF ANY KIND IN ANY PART OF SAMANTHA'S LIFE RIGHT NOW, WITHOUT THE WRITTEN PERMISSION OF HER PARENTS; DANA AND LARRY GUGGEMOS..... WE WILL BE SENDING SAMANTHA'S CLASS SCHEDULE AND ACTIVITIES SCHEDULE AFTER WE HAVE MET WITH SAMANTHA'S AREA BOARD III (STATE) REPRESENTATIVES.

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BELOW ARE SOME OF SAMANTHA'S FAVORITE THINGS TO DO
RUN W/ SHOE, HER DOG	PLAY AT THE PARK	WATCH VIDEOS	GO TO SCHOOL
GO FOR LONG RIDES	SHOP TILL SHE DROPS	LISTEN TO MUSIC	PLAY OUTSIDE

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*AUTISM - HOW LONG DOES IT LAST*

A SHORT DEFINITION

Autism is a severely incapacitating life-long developmental disability which appears during the first three years of life. It occurs in approximately five out of every 10,000 births (figures are currently being revised) and is four times more common in boys that girls. It has been found throughout the world in families of all racial, ethnic and social backgrounds.

*AUTISM - HOW IT AFFECTS GROWTH*

DELAYS IN GROWTH

Autistic children look normal and healthy (providing that they have no associated handicaps such as spasticity) but their language and social development is likely to be several years behind their physical age. However, their skills with tasks which do not need language may be at their age level.

*AUTISM - WILL THEY BE ABLE TO WORK*

AUTISTICS AT WORK

Most autistic adolescents who are considered for work tend to be gentle, placid and even tempered. However, if a complicated situation arises in which the routine is upset and swift action is needed they may become extremely confused, agitated and perhaps irritable.

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