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Navigating Autism

navigating autismLife was never the same after Jack's 18-month wellness check. Up until that point, Tiffany and Sam Felsenfeld thought their son might just be a bit delayed in speech. Once their pediatrician began her litany of questions regarding baby Jack's development, however, there was no denying that something was terribly wrong.

"Our pediatrician was asking us questions like 'Is he babbling? Is he saying words? Is he making eye contact?' All [answers] were a solid no," recalls Tiffany, a mom of three who recently relocated from Southern California to a Denver suburb.

Her heart sank that day, but she kept a spark of hope that Jack only had mild developmental delays and nothing else. After seeing a specialist, she learned that Jack, like approximately 1 million other California children, is a child with autism.

Autism is typically defined as a developmental disability that significantly affects verbal and nonverbal communication and social interaction-generally evident before age 3. It is a disorder that may have both genetic and environmental origins, and the spectrum of autistic disorders can appear with a variety of symptoms and with different levels of severity. Although this is a group of similar disorders, scientists and doctors still grapple with the terms of its diagnosis, its medical definition and the umbrella of symptoms that are included in its diagnosis. (Recently, the American Psychiatric Association redefined what constitutes autism in their revised "DSM 5," removing the condition of Asperger's Syndrome from the umbrella of the autistic spectrum, for instance.)

Depending on its level of severity, autism means very different things to different families. Regardless of where a child may fall on the autism spectrum, all experts agree that early intervention and therapy is critical in a child's successful road to recovery. Pulse spoke with Eduardo Añorga, MD, a board-certified family practice physician, David Berman, MD, pediatrician, and chair of Torrance Memorial's Pediatrics committee, as well as Alice Diego-Malit, MD, pediatrician, to get a better picture of this complicated disorder. Each have encountered many children with autism over the years.

Dr. Añorga explained that children are not diagnosed with autism in the very early stages unless certain developmental milestones are not met. Even without a formal diagnosis parents can begin to seek treatments to work on individual issues. When Dr. Añorga is examining a baby, he looks for red flags such as delayed speech development and the inability to interact or maintain eye-to-eye contact or to turn when another person enters the room.

At later ages, he said children with autism typically lack the ability to communicate their speech or pick up the nuances of speech. As an example, Dr. Añorga explained that when he once asked a child with autism how well he slept, the child replied 'lying down.'

Another sign with older children is that many may not speak for hours while playing repetitive games alone, such as lining up toy cars. On the same given day, when they do speak, they may repeat things over and over again. Children with autism often play alone and not well with others.

"Any concerns parents may have about their infant or child's development or behavior should be brought immediately to the attention of their pediatrician. Pediatricians are very proactivein addressing parental concerns and play an important role not only in the recognition and evaluation of autism spectrum disorders (ASDs), but also in chronic management," says Dr. Diego-Malit. "Think of your child's pediatrician as an ally who will help you navigate the myriad of treatment resources including referrals to specialists, management of sleep difficulties, gastrointestinal problems, feeding challenges, and school issues."

It's also critical that parents be their own advocates and watch their children closely. It's often a long and arduous process to find and garner therapy after a diagnosis is made. (For an autistic behavioral checklist, see the sidebar on the next page.)

Fast-forward seven years after their son's initial diagnosis, and Tiffany and Sam say they could write a book about all the therapy and treatments they have sought for their child with autism. Jack, now 8½ years old, has made tremendous strides since then. He is almost finished with potty training (Tiffany has her iPhone alarm set to ring every 20 minutes throughout the day to remind him.) He started responding immediately to applied behavior analysis (ABA) therapy when he began it at the age of 2, Tiffany explained.

Parents of children with autism tend to juggle more than most-especially if they have other children who may sometimes feel a bit neglected. Like so many other moms of children with autism, Tiffany is a stay-at-home mom, largely to oversee Jack's therapy and treatments and to take care of Jack's two siblings.

Another South Bay mom of a child with autism-and three other children, who asked to be anonymous, said, "By the end of the day, I'm exhausted. I literally have nothing left. The emotional toil is incredible." Because of this, it's imperative that families with a child with autism find support groups and therapy assistance for everyone in the family.

"Knowing that ASD is a life-long condition and coming to terms with the fact that your child will be following a different path in life is not an easy task. Taking the time to "grieve" and accept your child for who they are is important," says Dr. Diego-Malit.

There are also online support groups within organizations, such as lafeat.org and Harbor Regional Center. Luckily, there are also face-to-face support groups and a myriad of services to take advantage of in the South Bay. (See sidebar on page 31 for resources.)

Even with support, living with autism isn't easy. The weekend Pulse scheduled a phone interview with Tiffany and Sam, it was delayed. As Sam later explained, Jack "was tantruming."

This is just life with a child with autism. There are good days and bad days. And even after years of therapy, a child's development may plateau a bit, stagnate, then accelerate again when another approach is tried.

"Parents should encourage their children's strengths to help them overcome their weaknesses. This applies to all parents-typical and autistic alike," says Dr. Berman.

While parents can work tirelessly to help their children improve, they cannot make autism disappear. Scientists still do not know the origins of this disorder that appears to be affecting more and more children each year.

"Scientific studies to determine factors responsible for autism are ongoing but there appears to be a genetic component involving complex environmental interactions prenatally, which increase the risk of later developing autism," says Dr. Diego-Malit.

"Despite an incomplete understanding of the specific causes of autism, parents can be reassured that numerous studies confirm that there is NO link between autism and vaccines or thimerosal. So all children with autism should receive the recommended vaccines in order to prevent serious childhood illnesses."

Furthermore, according to state education figures, the number of children with autism in California has tripled since 2002, with more than 680,000 students-or 11% of all California public school students-requiring special education needs.

Operation Jack The figures are staggering and can leave one feeling helpless to stop it. This feeling propelled Jack's father, Sam, to create Operation Jack (operationjack.org) and the popular Operation Jack Marathons held annually in the South Bay. It all started with a desire to do something, when he otherwise felt helpless. Sam says he desperately wanted to help his son Jack and other families struggling with autism but didn't know exactly what he could do.

Then he discovered Train4Autism (train4autism.org), an organization "that works tirelessly to raise money for autism charities." From there, Operation Jack was born, and Sam decided to focus on raising money for autism research. Talk about focus and dedication: Can you imagine running 61 marathons in one year?!

"Operation Jack started as an attempt I made to race at least one marathon a week in 2010 (61 total for the year, plus two ultra-marathons) to generate attention to raise funds and nationwide awareness for Train4Autism," Sam explains. Tiffany bragged about her husband's efforts: "In 2010, Sam ran 61 races and raised $85,000! Last year we put on a race near Marina Del Rey [2nd annual Operation Jack Marathon, held December 26, 2011], and it was a huge hit. We raised $40,000."

With the new definition of autism (APA's "DSM5"), some physicians and parents worry that it may take longer to garner a medical diagnosis-which provides the gateway to receive early intervention assistance from the state. Luckily, experts have pointed out that the medical diagnosis of autism and the educational definition of autism, which gives you assistance in the school years, are completely different.

Categories: Feature

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