Autism x 6: Family's kids all have the disorder

By Angie WellingDeseret Morning News

MURRAY — One minute they're sitting, the next they're gone. Off the couch and onto the rocking chair, into the corner of the room, anywhere but where they were. The children move quickly, often too fast for their parents — or even the camera's lens — to catch them

Scott G. Winterton, Deseret Morning News

Mary Kirton stands in her high chair in the kitchen during dinner. The Kirton family has six children with autism of differing degrees.


This speed, this constant flash of children, is why the Kirton house looks like it does: a veritable maze of locked doors and makeshift barricades that are designed to keep kids in, or out, of certain areas. It is why the Kirton parents can keep talking through just about anything, hardly raising their voices while 8-year-old Nephi has yet another "meltdown" as 5-year-old Sarah, aka "Tigger," bounces madly on the couch beside them.

After all, if John and Robin Kirton focused too much on these incidents, who would catch 3-year-old Ammon, lovingly referred to as "The Destroyer," before his little hand finds its way into his dirty diaper? And where, during all of this, are the older children, Bobby and Emma, or the baby, Mary?

Life with six children is tough. Life with six children with autism practically defies description.

The stress has landed the family in juvenile court, following an offhand comment from a frustrated mother, and cost John Kirton his job and the family's medical insurance. But it has also helped the Kirtons — who now market their own "Autism Bites" T-shirts — recognize the healing power of laughter.

John Kirton hugs his 5-year-old daughter, Sarah, at the family's home in Murray. John misses at least one day of work every couple of weeks to tend to his family.

"We use sarcastic humor to diffuse our stress," Robin Kirton said with a smile. Added husband John: "If we didn't laugh, we'd cry."

Dubious distinction. In Utah, 1 in every 133 children has autism, according to a recent study that placed Utah's rate about 12 percent higher than the national average. University of Utah researchers found that the rate is even higher for boys, at 1 in 79.

Even with such high state rates, having six children from the same family on the autism spectrum is extremely rare, said Judith Pinborough Zimmerman, Ph.D., assistant professor in the department of psychiatry at the U.

"What tends to happen is sometimes families, if they have one child with autism, they tend to stop having other children," she said. "Geneticists refer to it as stoppage."

Autism is characterized by impaired social, communicative and behavioral development. It is a spectrum disorder, with symptoms and characteristics ranging from mild to severe. Common characteristics include resistance to change, a difficulty expressing needs, tantrums, difficulty socializing with others, an obsessive attachment to objects, over- or under-sensitivity to pain and a preference for being alone. There is no medical cure for autism.

Autism cannot be detected by medical tests; diagnoses are based primarily on observation. Its causes are unknown, though research indicates that genetics can be a factor, while many believe that environmental factors and even childhood vaccines may be to blame.

Deseret Morning News graphic

The Kirtons note all of these factors when questioned about the cause of their children's autism. They also point to John's age as a possible factor, as he was over 40 when all of his children were born. (Bobby, the oldest boy, is Robin Kirton's son from her first marriage.)

The Kirton's own research, through Internet searches, online discussion groups and local autism conferences, has led the family to believe it may lead the nation in the number of children with autism. It's a dubious distinction to John and Robin Kirton, but they also see it as an opportunity to educate others about the disorder and, maybe one day, start their own nonprofit organization to raise money for other families with autistic children.

This week, researchers from the Utah Registry of Autism and Developmental Disabilities, a joint project between the state health department and the U. medical school's department of psychiatry, will visit the family's home to draw blood from each family member as part of an ongoing study into the role of genetics in autism.

Two-year-old Mary Kirton plays on the couch with her mother. Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified."

John and Robin Kirton bristle when asked the all-too-familiar question about their family: Why didn't they, as many parents do, stop having children?

Depending on their mood, the Kirtons respond with humor, frustration or defensiveness. Regardless, the answer remains the same — all of the Kirton children were already born when Bobby's fifth-grade teacher told John and Robin she suspected the boy suffered from Asperger's syndrome, a mild form of autism.

According to the Utah Registry of Autism and Developmental Disabilities, signs of autism-spectrum disorders are often the most obvious in 3 and 4 year olds, while more mild forms are often not diagnosed until later in childhood.

After observation tests confirmed Bobby, now 13, was a high-functioning autistic, the Kirtons began to become concerned about their other children. Sarah's diagnosis came next, then Ammon's.

"That's about when my grieving period started," John Kirton said. The Kirtons sought early intervention services for the two children, each considered "classic autistic." Falling at the severe end of the spectrum, each child is still in diapers and has limited verbal skills. It was one of those early intervention workers, from a local nonprofit organization that contracts with the Utah Department of Health, to whom Robin Kirton made the comment last fall about the family's Murray home being so dirty that some days she was tempted to "burn the whole thing down and start over."

The remark was never meant seriously, said Robin Kirton. It was simply one of those "dark and dangerous and scary thoughts that crosses the minds of all parents but you don't do."

Still, within an hour, workers from the state Division of Child and Family Services were at the front door. One week later, all six children were at the Christmas Box House, where they lived for two weeks while their mother's mental state was evaluated.

"I feel like my character was, at first, so smeared," Robin said. "At the same time, I know they were doing their job. I've just had to prove myself and earn our freedom back.
Emma Kirton, 9, chases Mary around the living room. The children move quickly, often too fast for their parents to catch them.

"It really helped humble us. It made us appreciate the children more." It also led to an official diagnosis for the other three Kirton children after the juvenile court judge ordered that they be tested for autism, as well. Last November, the news finally came: Emma, 9, and Nephi also have Asperger's syndrome and 2-year-old Mary has PDD-NOS, which stands for "pervasive developmental disorder — not otherwise specified." The news, Robin said, "was hard to take." However, the diagnoses also helped the family in certain ways, she said. "For one, it helped make sense of all the stress."

'Armageddon level'

The Kirtons will be back in court late next month for what they hope will be their final court hearing. "The thing with the thing," as John Kirton refers to the state intervention, is finally winding down.

The pair has made necessary changes to their home, and John Kirton has found work driving a truck for a local excavation company. The owner is sympathetic to the family's situation and the fact that John misses at least one day of work every couple of weeks to tend to his family — the reason he lost his previous job. And although John and Robin are without health insurance, three of the children receive Medicaid and the other three are on federal SSI (supplemental security income) through Social Security.

Meantime, the couple, who celebrated their 11th wedding anniversary in late May, will continue to cope with their situation in their own ways. John blogs on their Web site autismbites.blogspot.com about his family and rents World War II movies because, "even though I know how it ends, I like to see the fighting and how they got there." Robin, on the other hand, steals whatever free time she can to play her favorite computer game, Snood.

Recently, while reaching the highest level in the puzzle game, Robin reached an important conclusion about her life.

"I realized that the lower levels aren't fun now, because I'm good at it," Robin Kirton said. "If I had, say, six normal kids or less kids that were normal, that would be easy for me. God knew I was up for the challenge, so he made it.

"Six autistic kids is my Armageddon level."

Three-year-old Ammon Kirton, lovingly referred to as "The Destroyer," shuts the door on his baby sister, Mary. The door has been shortened so John and Robin Kirton can keep an eye on the kids.

John Kirton consoles his 8-year-old son, Nephi, who's been diagnosed with Asperger's syndrome. The six children are a handful.

Robin Kirton feeds her children dinner in their Murray home. The Kirton house is a veritable maze of locked doors and makeshift barricades designed to keep kids in, or out, of certain areas.
John Kirton shows what son Ammon does to most books and paper. Coping with stress has helped the Kirtons discover the healing power of laughter.

Brothers Nephi, left, and 13-year-old Bobby play with a Game Boy in their room. Bobby, Robin Kirton's son from her first marriage, was the first of the children to be diagnosed.

Don’t Mourn For Us 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 Toronto, 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 you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done—unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings.

We spend our entire lives doing this.

And then you tell us that we can't relate.

Autism is not death

Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival 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 possible to form the kind of bond the parents had been looking forward 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 forward 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 recognize that the thing you looked forward 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, get 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.

This poem or letter was made by Jim Sinclair an adult with Autism. This adult with autism helps parents to sort out these very important issues. As he puts it, “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.”

People with Autism are wired differently but just like you and me they are human beings.They have the need to be accepted and loved unconditionally just like them giving so much love to the people around them.Love emanates from these children.You can feel it all around them.

It can be felt by the way they lean,they put their head close,the way they talk to you,one of my students would put his nose to my nose when he says something,this way nobody can hear but me what he says.Then when somebody asks what he said,he does it again to warn me not to tell them what he just told me.

They are all very sweet.

My first year of teaching children with Autism I spent in a public school and as expected most of them lack the therapies they needed.We as teachers were expected to do everything for them.I have noticed that those with self – inflicted injuries and aggression have somewhat been feeling rejection by somebody close to them.

I had a first hand experience regarding this working with a 4 year old Autistic boy in Saudi.The mom is rejecting him.She even lets the 5 year old daughter beat the 4 year old boy.And she gets away with it because the dad who is working doesn’t know whats going on.The mom would buy things for her daughter everyday but will only buy a few things for him ..very seldom.

This boy would hit,scratch,head butt and bite the Ethiopian nanny.Slowly I was able to remove all these aggression.I made him realize…and believe me they are very bright kids,that hurting is bad.When he does it I put him in one corner,hold his face,make an eye contact and tell him “no hitting” then I say “its bad”.If he answers he wont do the bad behavior again.But if he doesn’t say ok,he will do it again.

Then I talked to parents and told them why he is doing the aggressive behaviors that they should not allow the daughter or anybody for that matter to hurt him.These children doesn’t know the idea of fighting back but they can imitate.

This boy would sometimes raise his hands,wanting to hit back but being so loving and sweet boy that he is,he will resort to hugging the sister instead.This is how they are..very loving people.

We just need to see them as they are and as they say…enter their world…because as the boy wrote here they feel like they are aliens…because they have their own world…and if we will not love and accept them and understand them,then they will never come out.

The way they progress will depend not only on the therapies they had,it will depend more on the love they feel around them,the acceptance that they feel.

Sensory Overload Explained

This is a true account of a person with Autism.


On the AutAdvo list, one of the NT members asked about sensory overload. This is certainly a topic of importance, given how strongly it affects the life of the autistic person, so I posted a rather detailed reply. I was surprised by the feedback I received for that post... it was overwhelmingly positive, and several people asked that I post it on my site so that others can read it. I was happy to do that, certainly, as helping NTs to understand autistics is one of the purposes of this site.

I will include the original citations from the post to which I replied, since the responses I typed were geared toward the questions as posted. Those original questions will have the greater than '>' symbol in front of them.

  What type of sensory overload? Is it auditory, visual, other, all?

It is different with each of us, but the short answer is 'all.' It can be any of the senses... I know that loud noises, or even persistent quiet ones, add significantly to the sensory load, and certain types of noises are worse than others. In time, my nervous system will return to normal if no other loads are placed on it, but if there are more noises or other loads present, the stress level will build faster than I can burn it off, and I will get overloaded.


I have described it like this. It is as if there is a reservoir of sorts that each of us has. This reservoir starts off empty, but the things we experience throughout the day fill it up. Any sensory load (which I define as stimulus that the nervous system is describing to the brain-- in other words, anything that can be felt) or other nervous system load will cause the reservoir to take on more fluid. It does not have to be unpleasant-- even pleasant kinds of sensory load (like enjoying a movie at a theater-- I like it, but it does present a notable sensory load) fill up the reservoir. Things like the smell of people's perfume, bright lights, constant motion (I cannot tolerate seeing too much motion, especially if there is more than one velocity of motion), noise (the more painful or annoying, the worse), etc., all tend to fill up the reservoir.


Other things also cause the level in the reservoir to rise. Social contact does this. It is not just the noise of people talking and seeing them move that causes the sensory load. For one thing, I have auditory processing problems, so I really have to work to understand spoken words. That causes the reservoir level to rise. Being ready to interact, or what I call being in interactive mode, is also difficult, and causes the level to rise.

Finally, thinking about what the other person said and devising a response real-time (as opposed to email, where I can respond at my leisure) also causes the reservoir level to rise rather quickly. The more difficult the interaction, the more quickly the level rises. In other words, if I am talking to other autistics, it rises slower, because I can talk more freely than I can with NTs, where I always have to try to guess what needs to be said. That is exhausting, and that exhaustion shows as rapidly rising levels in that reservoir.


I am stressed most of the time. Just for the fun of it, I took an online stress test (using the classical definition of stress as a bad thing, which is not exactly true, as I will get to in a moment) this morning, and it said that I had a stress level of 7%... "Your stress level barely registers." Oh, if only that were true. I don't have any way to measure this, but I think I am probably more stressed than most people that do all of the stressful things that would give them a high score on that test.

Things that are low-stress or that reduce stress in NTs are horrible for me. Stress, of course, adds to sensory load. Fear, anger, and any other powerful emotion makes the level in the reservoir rise rapidly. Happy contentedness makes the level go down, but positive anticipation, suspense, or excitement, at least for me, cause the level to rise, not fall. Having things not go according to expectation, or having the routine broken, causes the level to go up. Indulging my perseverations (like researching a topic with which I am obsessed) reduces the level in the reservoir, even if it involves things that are usually stressful, like interacting with people.


Just about everything I do outside the home makes the fluid level go up. As you can see, living in this world is in itself a highly stressful, sensory-loading kind of thing for my kind. Things that you do not notice can cause huge problems for us.


When I get time alone in a dark, quiet place, I can burn off some of the sensory load and cause the reservoir to become less full. Rocking, flapping, and stimming also help me to lower the level in the reservoir. Our tendencies to isolate ourselves, to flap or rock, to routinize our lives, to put things in a specific order, et cetera, are, in part, ways of reducing the level in the reservoir, or keeping it from filling up in the first place. In my case, I do many of these things as the reservoir begins to fill... so it fills much more slowly. My stims are vital to me being able to cope with the world, and I do them wherever I am if I need to. Others have been taught not to do these in public, so they let the reservoir fill up until they get to a place where they can recover from the strain and decompress.


This is less efficient than doing so as the reservoir first begins to fill, because the higher the level in the reservoir, the more quickly the reservoir fills in response to the next sensory load event. It's not a linear thing. When I am calm (reservoir empty), I can handle a lot more without adding to the reservoir level than I can when that reservoir is half full.


Keep in mind that I use "stress" more broadly than a lot of people. Stress can have many forms, and not all of them are bad. Hearing a funny joke that makes me laugh is a kind of stress. Riding a roller coaster, which I enjoy, is pretty stressful (it adds sensory load, which fills the reservoir). The difference is that many of the eustresses (good stress) also cause a release of endorphins, which helps to keep the stress in check.


When the reservoir fills, obviously, the ability to tolerate further sensory or nervous system load is nil. Any more sensory load will cause the reservoir to overflow or burst (it's just an analogy, so you pick the image that works for you). Overload is a failure to manage nervous system load levels (a slightly more accurate way to put it than sensory load, since some of the load is from within, as with emotion).

  Sensory overload can lead to what type of meltdown?

Any type. Actually, the term I would use would be overload-- a meltdown, I think, is usually a severe tantrum with a total collapse of coping ability and frontal lobe function, which is one of several possible responses to overload. In my case, I tend to shut down, not have a tantrum. I can feel my ability to think disappear. My voice becomes more monotonic than normal, and I start talking in gibberish. People ask me things when I am in that state, and all I can say is "I
don't know." I really don't know when I am like that... I barely know my name. In that state, my brain is ignoring most of the senses, so I have a pronounced tunnel-vision effect, and I am all but unaware of sounds around me. I can't smell anything in that state.


With the frontal lobe shut down, there is not much nervous system load, so I do not usually get worse than that. I have, though, especially when I was younger. Many times in school, the teacher would notice that I was not moving, just staring straight ahead with glazed eyes. She would talk to me, and I would not even notice. She got closer and addressed me from right next to me, and I would not notice. I was offline, for the most part.


Some of my kind have a tantrum, yell, hit, or do other things when they overload. I don't tend to do that. I just zombify.


It is distinctly unpleasant to be overloaded, and it takes a lot longer to recover from an overload than it would to recover from having the reservoir 90% full. Once the reservoir gets more than, say, 75% full, you'll see some signs that overload is coming. I can feel it when I have reached that point, or when the sensory load is so great that the reservoir is filling very rapidly. To others around me, it can be seen as sharp, fast rocking and a lot of wiping of my palms down my face.

Struggling through Autism

Local mother describes her family’s experiences with the disorder

By Heather Stauffer, Sentinel Reporter

Last updated: Wednesday, May 23, 2007 4:23 PM EDT

Michele Possenti has definite feelings about autism.

“Quite frankly, I hate all this,” says the Mt. Holly resident, whose oldest son was diagnosed with the disorder seven years ago. “I hate autism. I hate the word, what it is, what it stands for.”

In the spring of 1999, Possenti’s son, Sammy Talhelm, was 1 1/2 years old. He said words, she says, and played peek-a-boo, looking at her with his big blue eyes. He adored his big sister Paige and was curious about his little brother Jack.

Then everything changed.

“Slowly, right before my eyes, he began to lose all his recently-learned skills,” she says. “He no longer looked my direction when I called his name.”

Possenti excuses herself to go upstairs, returning with a framed portrait of a younger Sammy gazing directly at the viewer. It was, she says, the last picture he ever posed for.

“My first thought is maybe that he had hearing problems,” she says, explaining how she started taking him to doctors, trying to figure out what was happening. The eventual diagnosis was, she says, devastating.

“As parents we have all these ideas of the things our kids are going to do,” she says. “I remember dropping to my knees one night in the back yard and begging God to take me or let Sammy be anything but autistic.”

“You mourn the loss, but the child’s still there,” says Possenti, who was divorced five years ago and is now a single mother. What makes it harder, she says, is the fact that autism is a communications disorder. Sammy isn’t retarded, she says, but because he can’t communicate verbally, it’s impossible to know what he’s feeling or how much he understands.

Actions of a 2-year-old

Like most parents of autistic children, Possenti has spent countless hours and a multitude of dollars trying everything that might help Sammy — special restrictive diets, after-school therapists, visits to specialists, and two years of expensive speech therapy that weren’t covered by insurance.

So far, nothing has made much difference — for the past seven years, Sammy’s actions have remained those of a 2-year-old.

Today, Sammy is 9. He cannot talk or dress himself, and he is not potty-trained. When Possenti thinks he wants something, she asks him to show her on his Go Talk, a sort of talking picture board. Sometimes he uses it; sometimes he doesn’t.

Possenti glances at her son, who is smiling, as he always does, and staring vacantly, as children do when they’re day-dreaming. At the moment, the pacifier in his mouth is the only visual clue that something more than childish inattention is afoot.

“He does look perfectly normal,” Possenti says, admitting that on one level, she understands why a 9-year-old sucking a pacifier draws stares.

Still, she says, it hurts when people admonish her or make fun of Sammy.

“People think you can’t control your child,” she says, adding that stares, and worse, are standard fare in grocery stores, restaurants and even her own church. It’s not just the pacifier, she says; Sammy moves oddly, barely bending his knees, occasionally flailing his arms or making a sort of tuneless humming noise.

People poke fun at Sammy

When teenagers in the mall mimic Sammy, flapping their arms in exaggerated motions, she says she wonders whether it hurts him. And when she sees Jack, who is only 15 months younger than Sammy, maturing normally and interacting with others at a much higher level than Sammy, she wonders if Sammy knows what he’s missing.

“I feel very badly,” she says, “because Jack and Sammy are very close in age, and they should be the best of friends.”

Sometimes, Possenti says, she gets upset seeing media reports on autistic children who function well enough to play high school sports or take part in other normal activities. That, she said, is not the reality her family and an increasing number of households across the nation live with.

“There are 45 students at Sammy’s school,” she says. “Most of them look like Sammy.”

Everything is a learning process

With Sammy, Possenti says, “Everything has to be like a learning process.” But instead of mastering a concept and moving on, life with Sammy consists largely of repeating the same lessons over and over again. Getting him to sit at a table took months, she says, and they’ve spent years trying to get him potty-trained.

One of Possenti’s biggest concerns is safety.

“He has no concept of fear and danger,” she says.

When she’s cooking, Sammy might touch a burner or stick his hand in a pot of boiling water. He is very enthusiastic about lawn mowers, she says, and one time she found him across the street in a diaper and T-shirt, watching a neighbor mow.

Sammy also sleeps fitfully, and even locking his door after he’s in bed doesn’t always leave Possenti resting easy. After Sammy wandered out of the house one night, Possenti invested in door chimes.

Sammy spends every other weekend with his father, Possenti says, and she worries about him a little then and whenever she’s not with him: “I always worry what if, God forbid, something should happen to me, what would happen to Sammy.”


But she also worries about what will happen to Sammy when she is with him.

“You’ve got a 9-year-old that weighs 50 pounds,” she says. “He’s getting bigger every day, stronger every day.” She can still pick him up and carry him, if necessary — but how long will that last?

It helps, she says, that Sammy has a huge team of helpers. He attends the Vista School, where he works with a physical therapist, an occupational therapist, speech training pathologist and music therapist. There is approximately one aide for each of the six children in his class, she says, and teachers send home daily reports. Sammy also works with a therapist at home after school several times a week.

Still, she says, parenting Sammy is exhausting.

“There’s no real break,” she says. “You’re on 24/7.” And while ordinary toddlers eventually grow up and require less supervision, Possenti knows that Sammy might be like this the rest of his life.

Although autism support groups are available, Possenti says she’s not a fan of them.


“When I’m having a really bad day, it’s not always at 6:30 at the Y,” she says, explaining that she prefers to draw encouragement from her own network of family and friends.

“I think people really need to understand what autism is,” she says. “Once we get awareness, that leads to research, funding... maybe somebody will find something.”

For now, that’s the hope Possenti is clinging to: That one day someone will discover Sammy’s piece of the puzzle.

Summer Class

For Summer Class I handled a 7-year-old boy with Autism. He has an older brother also with Autism.

He is totally different from his brother his brother has a large frame, he is small. His brother can do most school work but with supervision. He needs a shadow teacher as well. Since they belong to the same class for the summer I was able to handle both.

This boy can write but can't spell nor read yet. I did not get enough time to assess his skills but based on my experience I think and feel he will be better than his brother in time. He has a splinter/savant skill in Math.

At one time the regular teacher asked him to work on the Math worksheet that needed him to do some counting, Addition, and Subtraction. He used blocks to help him in counting. While working on it(he gets distracted easily)we noticed the blocks he has for the answer has one extra block so the teacher told him to "check".When he turned his head, he just removed one block then wrote his answer. The teacher was laughing. She was getting amused by what this boy has done.

I told her that's the way they work. I told her that their display of strengths and weaknesses makes it so challenging to teach them. She was able to see this boy do the "Checking "many times that day and she liked what she saw and was smiling while they were working on the worksheets.

This boy imitates most of what his brother does. And when one of them plays up, the other would follow.

During class discussion, so many times when the older brother was called to answer the younger one would just go in front, stand up straight and look at the teacher waiting for the question so he can answer or do what his brother did.

One time the younger one was called by the teacher to answer a question. He can understand and answer given enough time. The older brother coached him by whispering in his ears the answer(remember they are both autistic). He could not understand what his brother whispered so I stepped in and repeated the question and asked the brother not to coach him. He was able to answer the teacher after a few minutes of repeatedly asking the question and rephrasing the question so he can understand better.

Obviously the older brother learned coaching and its nice to see him helping his brother.