No Test for Autism? You Can Still Play a Role

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Fred Biasini on Autism and Other Brain Issues

UAB News

Children suspected of having autism “need a full evaluation from a multi-disciplinary team,” said Dr. Fred Biasani, a developmental disabilities expert and head of the Early Head Start program at the University of Alabama, Birmingham.

If only there were a strep-like test for illnesses of the brain — disorders and maladies such as autism, anxiety disorders, depression — that could accurately and quickly diagnose such illnesses in children.

Such a tool would ensure that young people would get the help they need when they need it.

As it is, getting help for youth exhibiting behavioral problems can be tricky business for people who work with youth. It takes more than a savvy, trained counselor or coach to know how to help a child in need.

Experts say the best way to help such a child is first to talk to the parents of the child and second to refer the parents to seek a professional evaluation. An authoritative diagnosis is most likely to come from a multi-disciplinary team trained in the nuances of brain and developmental disorders.

“We see a number of children who get a diagnosis (of autism) from people going down a checklist, and it’s so much more involved than that,” said Dr. Fred Biasani, a developmental disabilities expert and head of the Early Head Start program at the University of Alabama,  Birmingham.

“They need a full evaluation from a multi-disciplinary team” before an accurate diagnosis can be made. The same holds true for any number of illnesses, Biasani said.

Autism spectrum disorders may be among the most difficult to diagnose. They certainly have been one of the  most contentiously debated maladies of the past several decades.

For years, parents worried that it was under-diagnosed and that a cover-up was being put in place to protect the makers of vaccine.

Phony data from British researcher Andrew Wakefield that suggested vaccines caused autism led the public on an unnecessarily wild ride. Wakefield’s findings were never replicated.

In 2010, the prestigious British medical journal The Lancet issued a retraction of Wakefield's 1998 study that showed a link between MMR vaccinations and autism. Wakefield's methodology as well as his financial ties were called into question over the years.

Finally, after years of study and examination of millions of diagnoses, the findings were clear. No link exists between vaccinations and autism.

Still, questions abound. Are temper tantrums a sign of autism? Is lack of language skills a sign of autism? The prevalence of autism has increased 20- to 30-fold in the past five decades, according to figures from the CDC. That leads some noted experts, such as Duke professor emeritus Allen Frances, to believe that it may be over-diagnosed and misdiagnosed. 

Frances has written that the broadened definitions of autism may reflect a concern to offer services to as many children with developmental disabilities as possible. Because of improper diagnosis, though, children often do not receive the precise kind of care they need, Frances wrote.

The concern about the rising number of diagnoses of autism has added to confusion about what it is, what might be psychiatric disorders, and what might be behavioral disorders based on certain lifestyle conditions.

According to the Centers for Disease Control, one in 68 children has autism spectrum disorder, a lifelong developmental disability. It is marked by problems with social communication and interaction.

Restricted, repetitive patterns of behavior, interests or activities are other characteristics. Signs of autism, such as not making eye contact, may appear in infancy, but the average age of diagnosis is 4, according to the CDC. Even later diagnoses occur.

The CDC and autism groups have lists of signs and symptoms to help parents and others possibly identify whether a child needs an evaluation. Some of the symptoms listed can add to confusion about how to best help a child in need.

“A big thing that keeps popping up is temper tantrums,” said Biasini. Temper tantrums are listed among behaviors that could indicate autism, and Biasini said he has talked to many parents who have brought their child in for an evaluation because he or she has temper tantrums.

“But all kids have tantrums” at one time or another, Biasini said. And, even if a child has a lot of tantrums, that alone is not necessarily an indicator of autism. It could be an indication that the child is having problems at school, at home or that he or she could have an anxiety disorder or depression.

Organizing things in certain ways can also be a sign of autism, but that in itself is not reason to send a child for an evaluation, Biasani and others said. In addition, it is entirely appropriate to organize by color or shape at certain ages of development.

“A critical piece of this is understanding that there can be lots of different explanations for different behaviors,” said Zachary Warren, Ph.D., director of Vanderbilt University’s Treatment and Research Institute for Autism Spectrum Disorders, or TRIAD.

It is important for parents and those who work with children not to jump to conclusions or diagnose. But, it is equally important not to ignore signs, either, Warren said.

“It is important to be transparent, to talk about things,” Warren said. “A community worker might be able to share his experience of what is going on with a child, and then ask the parent if teachers or others might have noticed this, too.”

Another crucial part of getting help for a child is to have some suggestions ready for the parent.

“You can say that you know you’re not the definitive expert but that you can recommend what they can do next, such as talk to the child’s teachers or involve the pediatric care provider,” Warren said.

The most important part of the effort is getting help for a child who needs it. Those who work with children in various settings often play a crucial role by bringing issues to the attention of parents.

“There can be a tendency to let things float (after a conversation with a parent),” Warren said. “It’s also important to follow up.”