Researchers make progress in treating autism

ameron Myers, a 4-year-old charmer with curly brown hair, hops onto a rectangular mat hanging from the ceiling, lies down and asks Deborah Meinberg for a hand.

“Push me,” Cameron says.

“Push me, please,” prompts Meinberg, a board-certified behavior analyst.

“Push me, please,” Cameron replies.

Cameron is rewarded with a half-dozen hearty back-and-forth pushes by Meinberg. As the swing begins to slow down, an exhausted Cameron rolls off onto the ground and lets loose with a muttered “Phew!”

Fair enough. The poor kid’s had a busy morning, what with all of the object matching and direction following he had to do beforehand during his session at Touro University Nevada’s Center for Autism and Developmental Disabilities.

Cameron has been diagnosed with autism, an umbrella term that describes a range of developmental disabilities that can cause behavioral, communication and social challenges in kids.

And that makes Cameron a member of a large, and growing, demographic.

Actually, what used to be called “autism” today is known by the broader classification of “autism spectrum disorders,” a phrase that captures more precisely the range of conditions that includes classical autism (which can cause significant social, language and communication challenges) and Asperger syndrome (which usually involves milder developmental deficits).

AUTISM INCREASing

Puzzlingly to doctors and researchers, the prevalence of autism spectrum disorders has increased — some estimates put the jump at more than 50 percent — over the past decade. According to the U.S. Centers for Disease Control and Prevention, about 1 in 88 children has been diagnosed with an autism spectrum disorder. And while autism spectrum disorders are found in every demographic, it is seen more often in boys (1 in 54) than girls (1 in 252).

Researchers believe this increase involves several factors.

First, teachers, pediatricians and parents are more aware of autism spectrum disorders today, says Nicole Cavenagh, director of the Touro University Nevada Center, which offers assessment, support services and treatment for children with autism spectrum disorders.

“Certainly, we are better at identifying these diagnoses,” Cavenagh says.

Also contributing to this increased prevalence of autism spectrum disorders is the relatively recent inclusion of other conditions into what formerly was the comparatively narrow category of “autism.”

Disorders that we now include as autism spectrum disorders “we used to call something else,” says Shannon Crozier, director of the University of Nevada, Las Vegas Center for Autism Spectrum Disorders, which provides assessment and support services to autistic children and their parents.

For example, “autism” formerly was used to describe only people who were “very severely withdrawn, nonverbal, (with) moderate to severe cognitive impairment,” Crozier says. “Since then, thanks to a lot of work done in the ’70s and ’80s, we’ve got a much better understanding that there are individuals who are severely impaired, but that this is a whole spectrum.”

Today, Cavenagh says, “we have a greater understanding that not everyone on the spectrum (acts) like Dustin Hoffman in ‘Rain Man.’ It is a huge range, so we are capturing many more people under this umbrella now.”

Also, greater awareness of autism spectrum disorders means that children are likely to be diagnosed earlier today, Cavenagh says.

In the past, a developmental delay associated with autism might not have been diagnosed until a child was 3, 4 or 5 years old, she says. Today, symptoms of autism-related disorders are being noticed — by parents, teachers, pediatricians — when children are younger, “so you’re making that pool bigger.”

Even taking such factors into account, diagnoses of autism spectrum disorders still have increased from a few decades ago, Crozier says, although we don’t yet know precisely why.

SEARCHING FOR A CAUSE

“We do know there is a genetic component,” Crozier says, although the genetic differences associated with autism “also exist in the non-autistic population.”

So, one theory holds that a genetic predisposition to autism spectrum disorders may act in conjunction with “some sort of environmental trigger, but we don’t know what the triggers are,” Crozier says. “It could be other medical conditions, metabolic disorders or a seizure disorder.”

On the other hand, she says, we now know that autism isn’t associated with, for example, the ’60s theory of “refrigerator mothers” — emotionally cold mothers — or childhood vaccinations.

The latter, in particular, is a hot topic. But the vaccination-autism link was advanced only in a single, now-discredited and “extremely flawed” study, Crozier says.

The bottom line remains frustrating, Cavenagh says.

“We don’t know what causes autism,” Cavenagh says.

And that makes the diagnosis of an autism spectrum disorder particularly wrenching news for a parent to hear.

“The worst part of my job is when I have to give a parent feedback (that) ‘Your child is on the spectrum,’ and they say, ‘Why my child? Why has this happened?’ Cavenagh says. “That’s the hard part of my job: Not being able to give that answer.”

Autism spectrum disorders are diagnosed primarily through a process of observation and assessment that’s designed as much to rule out other conditions — a learning disability or a hearing impairment, for example — as to arrive at a diagnosis of autism.

“There are some genetic tests that are done to rule out other things, but there’s not actually a (medical) test for autism,” Crozier says. ”So, you look at three global areas: Communication, social interaction and behavior.”

For a diagnosis of an autism spectrum disorder, developmental deficits must be noted in all three areas, she says. But just reaching that point requires a multidisciplinary assessment conducted by a team that may include, for example, a speech and language pathologist, a behavior analyst, an occupational therapist, a psychologist, a pediatrician and a genetic counselor.

“I have met families who have been given (a diagnosis that) a child had autism literally on a prescription notepad from the child’s doctor,” Crozier says. “That does happen, but it’s not typical.”

GETTING THERAPY

Gina Myers says she noticed when Cameron was about 18 months old that he didn’t seem to be developing at the same pace as his twin brother. An assessment by a team of professionals revealed that he had an autism spectrum disorder. (Cameron’s brother is being treated for a milder autism spectrum disorder than his brother.)

Cameron regularly visits the Touro University Nevada Center for therapy sessions. During a recent visit, he and Meinberg played a game that required Cameron to match an object Meinberg pulled out of a box with a card on the floor. Cameron seems slightly rambunctious during the exercise, but, when he focuses, is able to match each object to the proper card.

“No weefee,” he says.

“I don’t know what that is,” his mom admits, smiling. “He keeps saying that.”

Cameron has been attending sessions at Touro for about a year, Meinberg says. “We’ve come a long way. It used to be that we’d spend 40 minutes out of a 60-minute session throwing a tantrum. Now, we spend maybe 10 minutes, tops.”

During today’s session, Meinberg and Cameron work on developing such skills as following teacher prompts and following directions.

“The other thing we’re doing today is his vocabulary,” Meinberg says. “Sometimes he wants to say something but he doesn’t know what the words are.”

Cameron’s mom has noticed the improvement in her son since he began therapy at Touro.

“He pays more attention and he says more words,” she says. “He’s able to communicate better. Before, it was just a lot of tantruming.”

LOOKING FOR HELP

Cavenagh says Touro’s center, which opened in 2008, offers assessment, support and treatment services to kids with “pretty much any kind of child neurodevelopmental issue.” However, she estimates that more than half of the center’s clients are receiving treatment for conditions that fall somewhere on the autism spectrum.

At the center, parents also learn — via, for example, take-home DVDs of their children’s sessions — how to work with their children at home. That’s key, Cavenagh says, because a diagnosis of an autism spectrum disorder is a life-changing diagnosis for families.

“It definitely affects the kids, but, like pebbles in a pond, it affects mom, dad and (other) children.”

Perhaps because it is such an emotionally wrenching diagnosis to receive — and because so little is known about what causes autism — parents may find themselves seeking out still-unproven treatments.

“The Internet is a blessing and a curse,” Cavenagh says. “You get on there and Google ‘autism’ and there’s just so much that comes up, and people forget that just because it’s on the Internet doesn’t mean it’s the most solid source of information.”

At Touro’s center, “we focus on evidence-based interventions,” Cavenagh says. “The types of therapies we offer are types of therapies that have been offered for years, and there is empirical research (behind them for) children who have these different kinds of conditions.

“We owe that to parents, for them to be given tried-and-true, proven methods of intervention.”

SEEKING PROFESSIONAL ADVICE

Crozier suggests parents research treatments and therapies through such organizations as the 1National Autism Center, which she says has compiled a thoughtful review of autism literature, and has a list of evidence-based practices.

In evaluating treatments for their children, parents should do their research with a critical eye.

“There are many companies willing to take a lot of your money, and parents are willing to do anything to help their kids,” Crozier says. “So I tell parents to stick with what we know works.”

Then, Crozier continues, if a parent also wishes to “try something and be your own researcher, know you are trying something that’s maybe unconventional or hasn’t been established yet.”

A potential difficulty of diagnosing autism spectrum disorders lies in the reality that every child has his or her own quirks and personality. However, Crozier says that, if something seems amiss in the course of a child’s development, a parent shouldn’t be shy about seeking professional advice.

“I guess the two big pieces of advice I have for parents is, one, to listen to your gut,” she says.

“If you’re concerned that something is wrong with your child, then pursue it until you have an answer,” she says, and don’t allow someone else to “brush off your questions, whether that’s a pediatrician or a nurse or a teacher or a grandparent.”

Then, Crozier says, “start with evidence-based practices. Be mindful of people who might be more interested in your pocketbook than your kids.”

Contact reporter John Przybys at jprzybys@
reviewjournal.com or 702-383-0280.