From Volume 4 Number 12

SALT LAKE CITY, Utah, USA: Autism is a difficult diagnosis for any parent. For Robin and John Kirton, it’s difficulty times six. Each of their six children suffers from a different form of the disorder, which affects an estimated one in 150 American children. This multiple incidence of autism is an incredibly rare occurrence that, experts say, must point to something in the genes.
    Studies have shown that if one child has autism, the chance of the next sibling having it is only about 15 per cent.
    “They’ve rolled the dice six times and have a child each time with autism. That’s really uncommon,” explains Dr Gary
Goldstein of the Kennedy Krieger Institute for paediatric research and treatment in Baltimore
    After reading about the Kirtons’ inspiring story in People magazine, ABC’s “Good Morning America” programme decided to visit the Utah family to find out just how they cope.
    “We worry about them, where they’re going to be 10, 20 years in the future,” says John. Together, he and Robin navigate the
diverse world of autism, and deal with each child’s individual condition.
    Bobby, the oldest at 14, has Asperger’s syndrome, believed by many to be a high-functioning form of autism, that his teachers started noticing in the 5th grade.
    “He just would not speak up. If he wasn’t sure about something, he just wouldn’t ask. He was like a fly on the wall, and
would just sit back and not do things ... we didn’t know any better, we just thought he was quiet,” explains John.
    With the help of his school, Bobby has been able to thrive, academically, but is often lost when it comes to social and behavioural skills, shying away from other kids on the playground, unsure of how to make friends.
    “He doesn’t engage in back and forth conversations with people. It’s mainly one-sided on his side, whatever interests him, mainly,” says John.
    The next eldest children, 9-year-old Emma and 8-year-old Nephi, have more severe Asperger’s. Unlike their older brother, they are prone to anxiety, temper tantrums and extreme fixations with a specific object.
    When “Good Morning America” arrived, they were both so obsessed - Emma with her artwork and Nephi with his Legos - that they didn’t want to talk or do anything else.
    Nephi is “somewhat like Emma, where he has the meltdowns at school, as well,” according to John. “He has hit [others] before, also, so he and Emma are very similar in that respect. Varying levels, different things upset him, though he’s not as anxious as Emma. Nephi doesn’t quite worry as much as she does.”
    “In school, she’ll get upset about the most trivial thing that wouldn’t bother a kid half her age, and she’ll just start crying, burst out in tears. Sometimes, she’ll cry out loud, wail. Sometimes she will strike other children, she’ll hit,” says Robin.
    “She has a very difficult time transitioning from one activity to the next, and will sometimes have fits, bouts of aggression over it, because it upsets her so much to not be able to finish.”
    At the other end of the spectrum are 6-year-old Sarah and 4-year-old Ammon. With a diagnosis of classic autism, both are completely non-verbal, and have wreaked havoc on the Kirtons’ home. Both have to be diapered with extra tape, and their clothes put on backwards to prevent them from putting their hands inside their dirty diapers.
    “She’s 6 years old and she’s not potty-rained,” says John. “She does a lot of screaming, that’s how she communicates.”
    “We have to strap Sarah in when she eats, because otherwise, she’ll just bounce around. In order to get her to sit there and finish a meal, I have to strap her in,” explains Robin.
    Ammon used to rock in a recliner so violently that he once flipped himself over, and would spend hours and hours shredding paper.
    “He sways his head and bobs, and when he’s in the bathtub, he likes to pour water continuously over his head and watch the water fall. He flaps his hands, and he moves his head,” says John.
    With the least severe form of autism, called PDD-NOS, 3-year-old Mary is the youngest of the brood.
    “She’s about a year delayed with her language. She’s also emotionally behind. She gets upset and has these little meltdowns, as well. She does a little bit of hand flapping,” says Robin.
    How could this happen to all six?
    “The current feeling is, it’s a combination of genetic risk and some environmental risk that either determines what kind of autism the child has, or how severe the autism is,” explains Dr Goldstein.
    No matter how severe the autism, this can be financially crippling for families. The average cost of caring for just one autistic child is $500 a month.
    “The biggest factor that is holding us back, and a lot of autistic parents, is being able to afford to try different things, because there are some methods out there that cost a tremendous amount of money,” explains John.
    Despite the challenges that daily life with six autistic children can bring, John and Robin say they feel incredibly blessed to have them.
    “They’re just so wonderful in their own unique ways, and we accept them and love them for who they are, and they just bring so much joy into our lives, and we just love being their parents,” says Robin.
    “We do love them, and want to take care of them, and just hope for a better day to make their lives easier,” says John.
    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.
    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 Kirtons’ own research, through Internet searches, online discussion groups and local autism conferences, has led the family to believe it may lead the United States 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 non-profit organisation to raise money for other families with autistic children.
    Recently, researchers from the Utah Registry of Autism and Developmental Disabilities - a joint project between the state
health department and the medical school’s department of psychiatry -  visited the family’s home to draw blood from each family member as part of an ongoing study into the role of genetics in autism.
    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 humour, 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
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 that Bobby, now 13, was a high-functioning autistic boy, 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 non-profit-making organisation that contracts with the Utah Department of Health, to whom Robin Kirton made the comment last autumn 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. 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.”
    The Kirtons will be back in court shortly 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.
    In the meantime, the couple, who celebrated their 11th wedding anniversary in late May 2007, will continue to cope with their situation in their own ways. John blogs on their website (autismbitestheblog.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 favourite computer game, Snood.
    Recently, while reaching the highest level in the puzzle game, Robin came to an important conclusion about her life.
    “I realised 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 fewer kids who 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.”

The Kirton family has started a website - AutismBites.com - a cyber support group for parents of autistic children

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