Aspies For Freedom

Living With Autism
DANA BARTHOLOMEW
c. 2007 Los Angeles Daily News
Distributed by The New York Times Syndicate


There were tantrums at the mall. Hissy fits during haircuts. And bouts of biting other kids in day care or striking children at birthday parties.

For Robert and Pilar Dowell, it was hard enough to bear twin sons with autism. Then a third son was diagnosed with the difficult brain disorder.

"I had a nervous breakdown at work. ... I could not stop crying," said Pilar Dowell, 43, of Winnetka. "We were both crying. We had gotten to the point where we didn't know what to do with the boys.

"We were both devastated."

Worse, two of Pilar's three nephews also share variations of the neurological disease.

With one in 150 Americans now thought to have the disorder, there is increasing evidence that heredity may play an important role in determining who develops autism.

The world's largest collection of DNA samples taken from families affected by autism now points to two new genetic links.

Results of the five-year groundbreaking study, led by the Autism Genome Project, were published Sunday in Nature Genetics.

For the first time, scientists from 50 research institutions in 19 countries combined DNA analyses of 1,200 families, including the Dowells, to search for genetic commonality.

They found that a newly identified region of chromosome 11, as well as the gene neurexin 1, may play critical roles in autism spectrum disorders.

Researchers at the University of California, Los Angeles, who participated in the study said the findings suggest that autism has numerous genetic origins, rather than a single or just a few major causes.

"I am excited," said Dr. Stanley Nelson, a professor of human genetics in UCLA's David Geffen School of Medicine. "This is the most powerful study of autism to date.

"(But) even though this study is huge, we need to increase in order of magnitude -- from 1,200 to 12,000 to 120,000 -- in order to find all the genetic causes of autism."

Such studies, however, are expensive.

Blood samples, DNA analysis and psychological testing of each autism family costs $6,000, Nelson said. The entire study cost an estimated $12 million.

Nelson is casting an even wider -- and cheaper -- net by inviting families with autism to register on the Internet and send samples of saliva for further DNA research.

In a revolutionary approach to autism research, the Autism Genetic Resource Exchange will then be posted online for scientists to study.

"I believe there will likely end up being hundreds of genes that lead to an increased risk of developing autism," Nelson said.

Autism is a complex disorder usually diagnosed in children by age 3. Characterized by a difficulty to express needs and an inability to socialize, it is often accompanied by acute behavioral challenges.

This month, U.S. health officials, saying about one in 150 American children shared the disease, called the troubling disorder an urgent public health concern.

A recent study by the U.S. Centers for Disease Control and Prevention suggested that 560,000 children and young adults have the condition.

For parents, such children can be especially challenging.

"It was difficult in the beginning," said Pilar's sister Gloria Martin, 45, of Santa Rosa, whose eldest son has autism and whose youngest son was diagnosed with pervasive developmental disorder, a variation of the disease.

"My (eldest) son would sit on the floor, his eyes would go completely white, and he'd start spinning. It was scary."

The Dowells also found it harder at first. When Kevin and Christopher were born nine years ago, the Dowells struggled to find the right baby formulas.

"Sometimes I think that God must have a lot of faith in me in order to handle this -- that he doesn't give us more than we can handle," added Pilar Dowell, while watching over her 5-year-old son, Alex.

"And it helps to have Robert -- divide and conquer. But it's not easy."

When Kevin and Christopher began to talk gibberish, the parents thought it was "twin talk."

Then they thought the boys might be deaf because they didn't respond to their names.

Soon, the twins began walking on tiptoes, refusing to take medicine and failing to heed social cues from other kids. But the parents were not aware these were all signs of autism.

By the age of 3, the twins were booted out of a day-care center after they bit and drew blood from other children.

A Gymboree center kicked them out for being unsociable. A party ended in a battle over birthday gifts.

At first Robert Dowell thought he might not have been strict enough with his boys, that he'd lacked consistency in "time outs."

Ultimately, all three sons were diagnosed with high-functioning autism. Much more sociable today, they get help from Los Angeles schools and California State University, Northridge.

"We're seeing progress," Pilar Dowell said. Nelson said that the Dowells had a 1-in-20,000 chance of having autism in all three boys.

"It's kind of bittersweet," the mother said. "Oh, God. Is it me that caused this for my boys? But it's a relief to know that it's not because we're bad parents, but the result of some neurological disorder."

But lots of children do those things, especially at age three! My utterly NT younger sister used to have a huge problem with biting at around that age.

I don't like the way the article uses incidents like these to portray autism as an unmitigated tragedy. It's melodramatic, and there's more (clumsily attempted, unsubtle) emotional manipulation here than useful information.

I find (and lots of others do, too) that that's how the majority of autism-related articles, books, and videos are.  Especially those made by people with connections to one of the big cure organizations, like Autism Speaks or Cure Autism Now; their stuff is clearly calculated to wring as much donation money out of people as possible, using every tear-jerking, lying, unethical method they can.
As one poster observed somewhere here at AFF, you could make a video of any NT child throwing a tantrum and easily pass them off as autistic.  NT children are not angels, even in comparison to "monstrous" autistics.

um...yeah.

Most of that stuff those parents whine about is normal kid behaviour.

A quote from the rant in my sig: (talking about parents medicating and "treating" their kids for acting weird)
"There's something wrong in his BRAAAIN!! We have to make him NORMAAAAL! He has to be NOOORMAAAAL!!!"

Jesus....deal with your fecking kids....Stop trying to make every strange or disruptive behavior you don't want to deal with into some "disorder"....


I was a better baby than most kids i see in stores. Every time one of those flailing meatsacks goes on a rampage in Wal Mart or someplace my mother turns to me and says "I'm so glad you never did that"

the way it sounds like, it's talking about a family with childhood cancer.  we're not sick or diseased (alutism isn't a disease, it's classified as a disorder), and our existence isn't a tradegy.  and now we will have to be on a list for eugenics research?  no way.  i guess these parents only see us as a set of problems.

and we don't develop autism like it's a demon we become that we are broken people (ie normal brain that is damaged), many, if not all, are born like this and it has it's own pros and cons, and not just defects.  i wish they talk about the postivites instead of wasting time on how we shouldn't exist.

and i've seen badly behaved children of all types, some are just naughty like that.  we aren't rampant demons, i think that is just normal for three year olds and many of us will grow out of it eventually.  the dramatization has got to stop, especally saying the children are victims to autism as it's a demon and that they were cursed children and bligthed everyone they know.  and also, what is the defenition of unsoisable?  not chit chatting with other people all of the time?  when i'm in a public place sometimes, i don't desire to talk, but usually think about other things.  and sometimes i don't hear stuff as i'm focused on something else and you have to do alot to get me to pay attention.

but intersting to see that we probably have a diffrent verison of chromosome 11 than nt's.  i would like to do autism research, devoid of the eugenics and curebies.  but unfourntley, that's the only goal of curebies.

that is all.

I knew a guy in elementary school who may have had Asperger's- there were a lot of unique things about him. He was terrified of hairdressers. I remember finding that out and thinking, "Well that makes sense. Why aren't more people afraid of hairdressers?"

They're strangers and they hold sharp scissors to one's face and neck and move them around quickly. Who knows when they're going to accidentally or deliberately stab you or slice you in the face or throat? I don't really think that's likely, of course- especially the 'deliberately' part-, but when you're a child and you're sitting there in that chair...