Spotlight On Autism
New funding has fueled expanded research, detection and treatment. Even how we define the disorder has changed.
by Susan Stopper
Aimee Boothman of Philadelphia was concerned. At 18 months, her son Brett hadn’t begun talking. Her pediatrician recommended she have him evaluated. But she waited.
“Everyone kept telling me how boys are late talkers,” Boothman recalls. Even if there was a problem, she thought it only involved speech. “I was a first-time mom. I didn’t notice that he also wasn’t making eye contact or interacting socially.” At age 2 years, 9 months, Brett was diagnosed with autism.
For Autism Disorders
If your child exhibits any of these signs, the U.S. Centers for Disease Control and Prevention urges you to consult your child’s doctor for an evaluation.
• No smiles or other joyous expressions by 6 months
• No back-and-forth sharing of sounds, smiles or other facial expressions by 9 months
• No babbling, pointing, waving or gesturing by 12 months
• No words by 16 months
• No two-word meaningful phrases (without imitating or repeating) by 24 months
• Any loss of speech or babbling or social skills at any age
For more information about autism early warning signs, visit www.firstsigns.org or www.cdc.gov/ncbddd/autism/actearly.
To watch video clips of children exhibiting early signs of autism disorders, visit www.autismspeaks.org
Brett’s story is becoming more common as the autism rate continues to rise. According to the Centers for Disease Control and Prevention (CDC), autism disorders now affect one child in every 150.
Autism occurs more frequently in certain families and among males, but we still don’t know what causes it, and no one is sure why the numbers are increasing. With a recent large influx of research funding, experts are studying potential causes, both genetic and environmental.
Autism’s Broader Definition
“In the 1980s and earlier, the statistics only included kids with classic autism,” says Suzanne Buchanan, PsyD, director of clinical services at the New Jersey Center for Outreach and Services for the Autism Community (COSAC).
Today’s definition of autism is more inclusive. It embraces not only so-called classic autism, a neurological disorder that can profoundly affect development in social interaction and communication skills, but also other “autism spectrum disorders.”
These conditions include Asperger syndrome, a “high-functioning,” milder form of autism typified by deficiencies in social skills and difficulty reading nonverbal cues and processing sensory information. Individuals with Asperger syndrome have average or above intelligence and usually no significant delay in language development.
Pervasive developmental disorder (PDD), also on the autism spectrum, is a condition in which individuals exhibit some traits of classic autism or an unusual pattern of developmental deficits.
Greater awareness and parent advocacy have also led to improvements in identifying children with autism disorders. Educators, clinicians and parents are more aware of the warning signs, and research has produced better assessment tools.
Importance of Early Detection
Identifying children with autism as early as possible has become a main goal of the American Academy of Pediatrics (AAP). Although an autism disorder can’t be cured, early, intensive therapy can make a difference in a child’s behavioral and learning development.
Jean Ruttenberg, executive director of The Center for Autism in Philadelphia, explains that years ago autistic individuals weren’t treated. Because their brains weren’t stimulated early, most were viewed as mentally challenged, although their intelligence levels actually range from low to very high.
Children with autism, like all children, do much better if their brains are stimulated early. They often suffer “meltdowns,” throwing tantrums or becoming severely agitated when over-stimu-lated, their routines are interrupted or they can’t communicate their needs.
Once these children learn strategies to calm themselves and to communicate, they are better able to learn other skills. The earlier children begin learning, the farther they often progress. Within two months of intervention, Brett Boothman could communicate his needs and wants.
The CDC, in partnership with other national organizations, has launched a campaign called “Learn the Signs. Act Early” to help parents measure their child’s development from age 3 months to 5 years. It lists milestones for children such as responding to their own name at 7 months or babbling at 12 months. Delays in reaching these milestones could signify a developmental problem. (See sidebar.) However, only testing can determine if a child is a late bloomer or has a disorder.
“An experienced clinician can make the diagnosis of autism as early as 18 months in some children,” says Dr. Buchanan. Children with Asperger syndrome can be trickier to diagnose early on because they usually have no language impairment.
Deirdre Wright, president and founder of ASCEND Group, The Asperger Syndrome Alliance for Greater Philadelphia, explains that kids with this disorder are usually diagnosed when they reach school age and their issues make them stand out from typical peers.
What’s New in Autism Research?
With increased funding, researchers are conducting thousands of studies on all aspects of autism. Here a few recent findings and current initiatives.
Treatment
• Several studies of new treatments have produced hopeful findings but still need further research, says the American Academy of Pediatrics. Giving kids with autism vitamin C seems to improve sensory, motor and other skills. Music therapy seems to benefit communication skills.
• University of Texas at Dallas researchers are using virtual reality training to help teenagers with Asperger syndrome practice social skills. The teens navigate through a virtual world of places encountered in everyday life such as classrooms and playgrounds, practicing skills with an avatar created in their likeness.
• In late 2006, the U.S. Food and Drug Administration approved use of the drug risperidone to reduce irritability in kids with autism. The National Institutes of Health (NIH) just announced funding to study the effects of the drug buspirone in improving social interaction and reducing repetitive behavior, sensory dysfunction and anxiety in children with autism.
Causes
• Last month Drexel University researchers were awarded an NIH grant to study possible risk factors and biological indicators for autism before birth and in newborns and young children. The study will follow mothers of children with autism at the start of a subsquent pregnancy and through the child’s development to age 3, focusing pollutants and medications taken during pregnancy.
• The Children’s Hospital of Philadelphia (CHOP) is one of several sites studying brain differences in children with autism. The CHOP study conducts MRI brain scans of younger siblings of children with an autism disorder. They are at higher risk because of autism’s suspected genetic causes.
• The NIH just announced additional funding for the Autism Genetic Resource Exchange (AGRE), a nationwide family registry and biomaterials repository seeking to identify the relationship between autism-related genes and physical traits. AGRE makes biological samples available to researchers seeking to identify genetic variations linked to autism.
What should you do if you think your child is displaying warning signs for an autism disorder?
“If you have any concerns about a child’s social interaction or language development, don’t hesitate to have him evaluated,” says Susan Levy, MD, director of the Regional Autism Center at The Children’s Hospital of Philadelphia.
Your child’s pediatrician can probably recommend a professional with experience conducting evaluations for autism. For help finding an evaluation, vist the Autism Society of America’s online referral database of autism related services and supports at www.autismsource.org
While resources for children with autism have increased in recent years, there are still long waiting lists to see specialists. Yet a recent AAP report strongly advises intervention as soon as autism becomes a serious consideration rather than waiting until a definitive diagnosis is made
“We have a saying that if you’ve seen one autistic child, you’ve seen one autistic child,” says Ruttenberg. Because there is such a wide range of intensity, symptoms and behaviors among the autism disorders, each child is affected in a unique way, making individualized intervention programs essential.
Carla Gonzalez of Jackson, NJ, says a combination of therapies has helped her son Marco, age 6, flourish. He has benefited from behavioral, occupational and speech therapy.
“As a parent you’re often looking for the desired outcome,” says Gonzalez. “But sometimes you have to step back and be happy with the little steps.”
With numerous treatments available, some of them still experimental, Ruttenberg advises, “Do some research to find out what’s credible. Make sure there’s some evidence base behind the treatment.”
Looking Ahead
Research into autism’s causes, screening methods and treatment, as well as new initiatives to provide support to individuals with autism disorders, is expanding thanks to increased funding, attention and understanding. (See sidebar.)
“There is great interest in understanding how both genetic and environmental factors combine to cause autism,” says Geraldine Dawson, PhD, chief science officer at Autism Speaks, a foundation dedicated to autism research and awareness.
As health professionals learn to identify autism at earlier ages, researchers are exploring interventions appropriate for the very young.
“Most of these are delivered by parents and involve helping the infant make eye contact and communicate during playful interactions,” says Dr. Dawson. “By working with infants who are just beginning to show symptoms, it is hoped that we might be able to prevent the onset of the full syndrome of autism.”
Susan Stopper is a local freelance writer.