Monday, December 17, 2007

Autism -- a world into oneself

Numbers continue to rise

Jake Hayes was born seemingly brilliant and with a passion for prehistoric and mystical animals. By the time he was 3½ years old, he could tell you the names of every dinosaur and wing span of every pterosaur. But his genius in some areas are a trade off to his struggle in others.

Gabe Reynolds, 15, lost speech at 18 months for three years and still has a difficult time stringing words together for a complete sentence. But he reads and surfs the Internet for games and pictures he likes. His mother knows there's much more going on than people give him credit for.

Jake's on one end of the umbrella of pervasive developmental disorders called autism spectrum disorders. Gabe is on the other.

Gifted but challenged in different areas, different ways and to different degrees, even clinicians are continually amazed by the uniqueness of children on the spectrum.

"I think it's one of the most underestimated populations in the world," said Shreveport occupational therapist Suzanne McMillian, who treats children with ASDs at The Center for Therapy. "Some of the things kids write to me or draw for me is incredible. Just because we do not have an IQ test for them does not mean they do not have above-average intelligence."

Autism has been thrust into the limelight in the past year with celebrity stories, books, new studies and new universal guidelines for screening.

The American Academy of Pediatrics first called for universal screenings in 2006. A new report that appears in the November issue of Pediatrics, spells out in more detail how to evaluate patients with autism.

"I think it's great," McMillian said. "The earlier you can get them into intervention, the better."

The reason for all the attention is apparent.

In 1999, the autism incidence rate in the United States was generally cited at one case per 2,000 live births. Today, the Centers for Disease Control and Prevention estimates ASDs affect as many as one in every 150 children. The number for boys is four times greater than girls.

In Louisiana, the number of children in the school system identified with ASDs has more than doubled from 1999 to 2005.

What caused the increase?

Clinicians have felt the increase, too.

"We've seen a gradual increase in the last four years or so," said David Irwin, Ph.D., who overseas the Children's Center, a service of the LSU Health Sciences Center School of Allied Health Professionals.

The Children's Center does developmental assessments for families in a 33-parish area.

"We're getting more and more referrals and more diagnosed with ASDs," Irwin said. "We probably have about three to four children each month where there's a concern."

Some wonder if the rising numbers simply reflect broader diagnostic criteria and better identification.

Irwin thinks that's part of it.

"We think there is more awareness of what the symptoms are and what can be done to help," he said. "It's such a wide spectrum that several years ago some of these kids may have just been classified as different."

Others believe increased awareness alone or another theory, genetics, could never justify the entire increase of autism numbers.

Vicky Roy, of Baton Rouge, is a speech-language pathologist, who is also a certified consultant for an ASD treatment program, relationship development intervention.

"I think we just don't know yet," Roy said. "My personal opinion is it's impossible to have a genetic epidemic and the increase cannot simply be explained away by greater awareness. I believe there are some environmental factors that are also playing a role in the increase."

Scientists haven't stopped looking.

The CDC's Centers for Autism and Developmental Disabilities Surveillance and Epidemiology launched an initiative in 2006 to gain a better understanding of the possible risk factors for and causes of autism.

Some of the factors being studied include: the genetic contribution, certain medical conditions during or after pregnancy, drugs taken or used during pregnancy, a body's abnormal response to infection, hormones and select mercury exposure, including from vaccines.

Wide range of autism

Jake Hayes' mother, Colleen LaBorde, admits she considered autism a very narrow disorder. She never imagined her bright 4-year-old, had a developmental disorder.

"When he was very young, he just seemed brilliant," said LaBorde of her son, who has Asperger's syndrome. "It wasn't until kindergarten that we started noticing anti-social behavior."

It took almost a year of behavior problems before an occupational therapist with Caddo Parish schools was called in and suggested he might have a form of autism.

"She explained there was wide range of autism spectrum disorders and that Jake was probably very far on the high functioning end," LaBorde said.

Frustration changed to hope with the diagnosis. One of the most positive changes for LaBorde was the family's first Individualized Education Plan. The IEP is tasked by the nation's special education law — Individuals with Disabilities Education Act — to guarantee a parent, no matter what the disability, their child will receive an education. It's a plan devised with parents, school and support staff for each child who qualifies.

Those resources can mean anything from extra equipment they may need to extra time for tests to occupational or speech therapy.

So far, LaBorde is thrilled with Riverside Elementary School, the teachers and the resources her IEP has provided her son. But she wonders what would have happened if someone hadn't recognized Jake's disorder, or his school didn't have a staff trained to understand her son.

"Too often I hear other parents struggling to get what they need, and something needs to change," LaBorde said.

The state's Education Department is struggling to keep up. Since the late 1990s, the state has begun training more people through professional development to teach autistic children.

"We encourage even regular education teachers to attend," said Susan Batson, acting director of the Division of Education Improvement and Assistance. "It's always a challenge when you have more children with disabilities and unprepared personnel to work with them. That is why professional development efforts are so critical."

Also critical is early intervention.

"Every child can make a great deal of progress if they are properly diagnosed," Irwin said.

Early diagnosis benefits the parent's too.

"The parent is more understanding that the child will act different to the world," Irwin said. "We don't want to punish a child because they are different, but utilize that to build a relationship with the child."

After the diagnosis

Most parents of ASD children seek and are eligible to receive through insurance and the public school system a number of therapies, including speech therapy, sensory integration, physical therapy and occupational therapy.

For many parents this is not enough and they seek out other interventions.

One of the most widely accepted treatment methods is applied behavior analysis, an intensive one-on-one interaction with a therapist that reinforces desired behavior.

Another is RDI, which gives the parents the primary role as therapists and addresses the more subjective, subtle reasoning abilities of people, such as emotional sharing, flexible thinking, self-awareness and dynamic appraisal of our surroundings.

There are several others.

Actress Jenny McCarthy, who wrote a best-selling memoir about raising an autistic son, shone the light on one of the most controversial methods — a biomedical approach called Defeat Autism Now protocol. The actress also used traditional therapies and is using RDI, she said in her book and subsequent interviews.

The DAN philosophy addresses the underlying causes of the symptoms of autism through biomedical interventions, largely nutritional. The protocol involves using diet, supplements, anti-virals and anti-fungals to rid the body of toxins.

Parents who use DAN are usually also using other behavior and social therapies.

"I knew I had to try something," said Gabe's mother, Alice Reynolds, who in January heads to a second visit in Arkansas to see a DAN doctor for Gabe. "When he was 8, we were in a good place, but now that he's going through puberty, he can't deal with all those emotions."

Reynolds feels her son's frustration and even depression. It was one of McCarthy's television interviews that made her decide that the financial hardship to her family was worth the risk. None of the $600 DAN doctor visits or expense of traveling and cost of special foods and supplements will be covered by insurance.

"When I heard her (McCarthy) and others talking about their children getting recovered, I thought why not my Gabe?" said Reynolds, who has started a message board at Yahoo Groups, LouisianaAutismLink, for local parents interested in sharing ideas.

The Reynolds have just started the regime, but over the past weeks, a transformation has begun.

"He told his father one day, 'I want a litty, bitty hamburger.' It's odd for him to use correct pronouns and declarative statements," said Reynolds, who wishes Shreveport had more to offer for children with this disorder. "The Center for Therapy is great, but that's just the behavior part. There needs to be a medical part to address the complete person. There are no doctors here that can treat autism, they just observe it."

Is full recovery possible? The answer differs from treatment to treatment.

Roy has her opinion.

"If you define cured as looking indistinguishable from their peers, then yes I'd agree," Roy said. "But I don't think totally cured is possible. They will always have a harder time processing information (than a neuro-typical person)."

1 comment:

leonore(mommycool) said...

You know what, my daughter have taught me to love a psychology major...she have had made feel a better person now. She loves special children so much she always tell me that. They are really special in God's eye.