Early screening followed by treatment can makes huge difference in outcomes

Autism spectrum disorder rates in Arkansas soared from one in 145 eight year olds in 2002 to one in 65 eight year olds in 2010, reaching an all-time high. As sobering as those statistics are, the bright spot is that the studies done that indicate autism is more common than in the past have also drawn attention to the problem. That has led to greater resources being allocated to provide early treatment of autism that can make profound differences in the future abilities of autistic children.

“The biggest benefit of this data is it has been provided to leaders in the community and the state who have been able to have a major positive impact on legislation that enhances the availability of services for families dealing with autism,” said Arkansas Autism and Developmental Disabilities Monitoring (AR ADDM) Program Research Program Manager Allison Hudson, who works in the University of Arkansas for Medical Sciences (UAMS) Section of Developmental Pediatrics.

There is still a lot of research being done to find out why autism rates are going up. Hudson said the best answer they have right now for the increase is better identification, including better identifying children with autism in all racial groups. Right now minority groups tend to have lower rates of autism, but that may be because it hasn’t been detected as often in those groups.

“Once we identify children in all racial groups, it might be interesting to see if the prevalence equalizes across racial groups,” Hudson said. “There are four times as many males as females with autism. There may be something genetic to that. Another thing we are noticing with increases is there has been a switch across the past ten years. Before, we were identifying more children with intellectual disabilities. Now we are identifying more children with above normal intelligence. Being able to identify children with high intelligence speaks to the improvement in detecting autism.”

Another factor that is being considered possible, but not proven, is advanced maternal age of childbearing, said Eldon G. Schulz, MD, a developmental-behavioral pediatrician at UAMS who is a professor in the College of Medicine and the College of Public Health.

Schulz and Hudson have been traveling the state to raise awareness of autism which is critical to children receiving the services they need. Infants need to be screened for autism at 18 months, and between 24 and 36 months.

“If the doctor suspects autism, the child needs to be referred to early intervention as early as possible to give a child as much opportunity to be treated and hopefully remediated,” Schulz said. “Treatment can make a huge difference in their lives. We don’t have really great statistics yet, because there is such a wide variety in the severity of autism. But we know with proper intervention, including speech, occupation and behavioral therapy, a majority of these kids can enter kindergarten with minimal to no additional services needed. Most can go on to lead a normal life.”

Schulz said the care for treating autism is very intensive, and needs to be given by every caregiver who comes into contact with the child. That includes parents, grandparents, other relatives, babysitters and therapists.

The prognosis diminishes with more comorbidities. For example, if a child has autism with an intellectual disability, the prognosis is not nearly as optimistic. Other comorbidities that get in the way include severe language impairment, hearing or vision impairments, anxieties and Attention Deficit Hyperactivity Disorder (ADHD).

“Those can all complicate the diagnosis and the outcome,” Schulz said. “It makes treatment more challenging.”

Children from low-income families can receive government assistance for therapy, which is very expensive. Behavior therapy alone costs about $50,000 for three years.

Two years ago the Arkansas Legislature passed a bill mandating that insurance companies provide services to children with autism.

“That has helped greatly with access to services,” Schulz said.

AR ADDM Co-Investigator and Clinician Reviewer Maya Lopez, MD, said she understands how chilling this diagnosis can be for parents.

“It is a disheartening or sometimes scary diagnosis,” Lopez said. “But definitely we have people with autism who go to college, hold degrees, have jobs, and have their own families. Autism is not a diagnosis that limits a child’s ability to learn and progress. The diagnosis is used to determine how to help them in areas where they can benefit from assistance.”

Lopez said more in known about autism than in 2002, but it isn’t clear why there has been such a large increase in autism.

“Some believe these types of kids got a different diagnosis before such as ADHD, intellectual disability, or severe anxiety,” Lopez said. “But better detection of autism is not an answer satisfactory to everybody for why rates of autism have increased tremendously. There is a sense that genetics is part of it. The other part is some type of environmental influence on development. There is a group of people here in Arkansas and in other agriculture states who want to know if it is exposure to agricultural chemicals. Many people are interested in learning if exposure to neurotoxins is part of the problem.”

Lopez said her best advice to healthcare practitioners is do not delay when autism is suspected. They often hear from families that their doctor didn’t want to do anything until hearing back from the autism team at UAMS.

“Sometimes that really breaks our heart when a parent says that,” Lopez said. “The important thing is to start working with the child immediately rather than waiting to get the full diagnosis. We don’t have a blood test or x-ray to diagnose for autism. It takes a whole day for us to evaluate the child. We become a bottleneck for these children. We want to do a quality job, but we know there are kids out there waiting for services. Speech therapy can be started even before diagnosis. One of the best tools is the early onset of therapy.”

Lopez said the most well recognized therapies include development, physical, development, speech language and occupational therapies. Applied behavioral analysis can also be helpful, but is more difficult to access in the state. Behavior analysts provide it and there are a limited number of those professionals in the state.

The state government has supported a program known as the Arkansas Autism Partnership Waiver. Children eligible for Medicaid get additional therapy on top of traditional therapy from the early intervention program.

“This allows specialists to go into the home and teach the family things to do to help the child,” Lopez said. “This results in 30 to 40 hours per week of therapy in addition to what the child gets in school. Based on the evidence, this is the most effective way to help young children with autism. We encourage parents to apply. It will be to the child’s benefit.”

For more information visit: www.CDC.gov\autism, cdc.gov\ADDM