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.
About the Author
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.
My Daughter is currently trying to get my 5 year old Granddaughter diagnosed with autism . She has a 17 year old who was diagnosed with autism at age 3, so she (we) know the signs. My Grandson has a highly functioning form of autism, and will be graduating high school this year, but the early years were tough.
As you mentioned in your article it is very hard to get them in to be evaluated, and get that diagnosis. She was all set to see a specialist, filled out all paper work , and then the day before her appointment she got a call cancelling because she is 5 years old and they only see kids 4 and under. These major symptoms started to show when she started kindergarten this year. The school is trying to help, but without that diagnosis there is only so much they can do. My Daughter has contacted many places only to be told there is a 6 month waiting list. In the mean time she is being called to leave work to come to school to calm her down almost every day. My Daughter lives in the Milwaukee area, and finally found a place about 50 miles from her home that has agreed to get her in sooner than 6 months. Hopefully Advocate Aurora WI , can get involved with the Echo Autism Program. I can attest to the fact that help with diagnosing and treating Autism is very needed. Thanks I don’t usually comment on these articles, but this one hit home.
Thank you so much for sharing your family’s story. We strongly believe in the difference ECHO can make in supporting providers caring for children with autism and their families. We are definitely committed to working with the many incredible providers across the Advocate Aurora WI system.
thank you for starting this conversation. 1 IN 59! we need more conversations on this. And we need more help for the parents going through this. Raising a child with several special needs is wearing physically because a lot of kids don’t sleep or are aggressive. Its wearing emotionally in a way that never goes away. It is a lot to take on 24/7. Is the ECHO program only in IL? What is comparable to ECHO in WI? thank you
We absolutely need to more conversations on how to better serve all children and families of children with developmental differences. It is so stressful, and this has been even more so for many families during the pandemic. Out ECHO Autism in Primary Care program is open to providers throughout the world. For more information, please contact ACH-ECHOAutism@aah.org.