Tuesday, January 12, 2010

Autism x 6 - How It All Started

This is the story in our local newspaper that started us on the road to "fame".

Autism x 6: Family's kids all have the disorder
By Angie Welling
Deseret Morning News
Published: Sunday, June 3, 2007 12:21 a.m. MDT

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.

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.

"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.

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.

'Dangerous thoughts'

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.

"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 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 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."


Lynne said...

Question for you; How did you get your high functioning kids qualified for SSI? I only recently found out this was even an option, but now I realize my son will need it as he gets older. People have told me it is hard to get them qualified. Any advice?

sylsumida said...

My heart goes out to you. People can be so quick to judge and have no idea of the every day things that make living with autism so very hard. you guys have 6 full time jobs and I send you all our best wishes. I am sure that everyone is always giving suggestions but have you ever tried HBOT? We have started with my ASD son and it has done wonders for his sleep and great gains for his language. Can be pricey but many centers have grants that they give families.
All my best.

Anonymous said...

Wow, I appreciate that you guys are still married and actually agree about your childrens’ issues. . What nobody realizes is that many abusive or “in-denial” spouses will not allow a child to be diagnosed in the first place. Once you decide to get divorced, your situation goes from bad to worse. Most often the courts will give custody to the father because the mother seems too obsessed with the child’s needs. Too much for the courts to handle, that is. Dr. Freedman’s attempted to debunk the Autism-Divorce myth. This is not a myth, this is reality for too many families across the world. I wrote my personal proof as well as so many others on my webpage http://tinyurl.com/3yexkq2 that is the link. Therefore Dr. Freedman needs to study divorces and link it to Autism, rather than study Autism and un-link it to divorce.

Krista said...

My armegeddon level is one daughter with Asperger's and 3 "normalish" boys. You are seriously awesome people. I have been very humbled reading your blog today. Rock on.

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samphony05 said...

After years of searching, I finally found a family quite like mine! I am a mother of 5 children all diagnosed with asd and I also have high functioning autism!
My home used to be like yours- screaming, biting, rocking and destroying, but all of that has changed now! Due to a method that I have come up with my children are calm, self sufficiant andv 2 of them who lost speach now have it back and have had their dianosis change.
I might be able tohelp you. Please contact me if you are interested by e-mail, www.samphony@hotmail.com any time! I understand how hard it can be!

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Leroy Pfeister said...

I sympathize with you. People can be so quick judgment and don't know everyday things make her life very difficult, autism you have six full-time job and I send you all of our wishes. I believe that everyone always give advice but you tried HBOT? We have already started with my ASD son and it did to his sleep and great miracle earnings his language. Can be high, but many center allocation, they to the family.
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Wow! What a remarkable and inspirational story. Thank you so much for having the strength and courage (and faith) to share it. All six of your children are little miracles!

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Hello! i just recently saw you on discovery channerl. i also have a autistic daugther. i change her diet to gluten and dairy free..itwas so helpfull. the diagnostic change from severe to a only a language disorder you should tried and reseach about this matter...its change our lives...today my daugther is a normal kid thanks to a good diet..
you are doing a amazing job..god bless you...

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