Wednesday, July 25, 2007

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 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.


Franxbudi said...

Its nice tips and very usefull

Griefcase said...

What an interesting and enlightening blog entry on the subject of autism. Thank you for sharing.

Linda Della Donna

Anonymous said...

Typical Mormons. I cannot believe the mother states on her website she deserves a visit from Extreme Makeover Home Edition asking isn't their situation special enough? Her children have destroyed their home and would ruin the new one. They complain about being broke, tired and they chose this! Those children had no choice. They will never be independent or live alone. I seriously hope they stop having children and take control of their situation now.

Karla akins said...

It's not true that those children will never be able to live on their own. I have twin sons with autism who were just like the youngest boy in this family at his age. They are 13 now, and able to do many, many things. They finally potty trained at age seven; they read; they can do basic chores; and they speak now. They still have many challenges, but if I had given them up as unreachable or hopeless, they wouldn't be where they are today. Nothing is impossible. Nothing. I had a doctor tell me that hoping my children could live on their own someday was pie in the sky. I wish she could see these boys now. She would be shocked.

Anonymous said...

How extremely sad for these kids. The parents act like they don't know how this all happened. It's just baffling to me. These kids have huge problems. At what point and how many kids with how little income do you have to have before you say, "that's enough - we have enough on our hands"? John says he hopes all the kids will be totally independent. . . uh, I hope so, too, but for most of them, that doesn't seem like it's going to be the reality.