News

How to Better Address Autism

We’re talking about autism, a neurodevelopmental disorder affecting 1 in 59 children and their families. There are many factors behind an increase in diagnoses – some we know, and others we don’t.

A heightened understanding of genetic causes has improved our understanding of autism. Children who may have previously been thought to have developmental differences including intellectual disability are now being accurately diagnosed with autism.

We’ve also seen an increase in awareness across health care providers, parents, families, therapists and educators. This level of engagement is critical in detecting autism early, which has proven key benefits.

For the first time in 12 years, The American Academy of Pediatrics released updated clinical guidelines in 2020 on the diagnosis and ongoing care for children with autism. These guidelines support standardized screening in primary care, early identification and management of co-occurring conditions including sleep, safety, feeding, anxiety, attention and behavior.

These guidelines strongly support the need for early identification and intervention. However, because of increasing prevalence and shortages of specialized providers, autism is currently a public health crisis. Children aren’t able to receive the care they need when they need it, despite research supporting the necessity of early intensive behavioral interventions that include families.

Our programs at Advocate Children’s Hospital and the Pediatric Developmental Center at Advocate Illinois Masonic Medical Center stress early diagnosis, treatment and support. One particular program that serves our community is ECHO Autism in Primary Care. The multi-disciplinary team is a partnership between primary care and experts in developmental and behavioral pediatrics, psychology, speech therapy, occupational therapy, social work and parent advocates. Each discipline helps to paint a comprehensive picture of how a child learns, examining strengths and areas of challenge in their homes, schools and communities.

Across the country, children often wind up on long wait lists to be seen for developmental evaluations, not receiving care and effectively undermining the concept of early intervention. Bottlenecks exist for children and families for diagnosis and treatment. The current health care system doesn’t address this crisis, leaving children and families in a state of worry.

ECHO Autism in Primary Care is one solution, and it’s a new way of thinking about ensuring kids receive the services they need when they need them. Our program is the first ECHO Autism in Illinois and is a partnership with the University of Missouri.

We know detection isn’t always easy for parents and caregivers, as symptoms of autism can look drastically different – even within families. Just as every individual is different, autism presents differently in people. As a result, treatment should be individualized and change over time.

Many times, parents look back and realize their child had trouble sleeping or feeding (food selectivity that doesn’t improve or waking up multiple times in the night for years.) When paired with other diagnostic symptoms, these seemingly minor problems may be an indication of a larger issue, like autism.

There will never be enough specialists to address the need at a population level, but parents, caregivers, primary care providers and school systems are all integral in supporting a child’s development. Primary care providers are an especially crucial part of early intervention. They see children grow up before them.

Our understanding of autism is constantly growing and changing. We need to continue breaking systematic barriers preventing families from accessing the services they need when they need it.

Dr. Sarah Bauer is a developmental and behavioral pediatrician, Site Medical Director of the Pediatric Developmental Center at Advocate Illinois Masonic Medical Center, and a leader in the ECHO Autism program at Advocate Children’s Hospital.

Dr. Laura Mulford is a pediatric psychologist and Manager of the Autism Treatment Program at Advocate Children’s Hospital and the Pediatric Developmental Center at Advocate Illinois Masonic Medical Center. She is also a leader in ECHO Autism.

Article contributed by: Dr. Sarah Bauer & Dr. Laura Mulford