How California Can Meet the Challenge of Accurately Diagnosing Autism
A few months ago, I went back to the community where I lived for more than 30 years to attend a big party. The venue looked like a garden-variety medical office, but every one of us at the party knew it was so much more than that. We were there to celebrate the realization of a shared dream — raising the standard of care for a population of vulnerable children. Overcoming professional and institutional barriers, we were able to establish a first-of-its-kind center to ensure that low-income children with autism and related disorders would benefit from more accurate evaluation — at a point in their lives when the interventions would do the most good. The creation of the center ensures that parents and providers get a comprehensive diagnostic assessment and detailed treatment recommendations, and that their health plans can confidently authorize the treatment resources needed to make sure these children get the help they need.
The Autism Assessment Center (AAC) might not have become a reality if the California Health Care Foundation (CHCF) were not deeply invested in developing the management skills of the state’s clinical leaders. Each year since 2001, the foundation has selected up to 32 physicians, psychologists, nurses, dentists, pharmacists, and other health care professionals for the CHCF Health Care Leadership Program, a two-year part-time fellowship to enable them to resolve complex health care challenges with sound business management and effective public policy.
Tackling a Complex Problem
During my fellowship from 2012 to 2014, I worked at the Inland Empire Health Plan (IEHP), which serves more than 1.2 million Californians enrolled in Medi-Cal in San Bernardino and Riverside Counties. With advice from my leadership program mentor Victor Tabbush of the UCLA Anderson School of Management, I chose to establish a collaborative to assess the overwhelming unmet needs of autistic children and to design an intervention to close the gaps. I worked with colleagues to pull together a business plan to create a nonprofit, and with the help of many local people and organizations, we established the first autism assessment center of its kind in California. It offers a transdisciplinary evaluation staffed by a team of pediatric neuropsychologists, pediatric neurologists, developmental pediatricians, speech-language pathologists, occupational therapists, mental health clinicians, and even genetics experts. Together, they now provide a one-stop solution for more than 100 children each month who are served by Medi-Cal.
Autism spectrum disorder is a developmental disability defined by persistent deficits in social communication and interaction, as well as repetitive behavior patterns. The disorder can disrupt a child’s growth and development, and the disruptions can persist for life. Research shows that earlier diagnosis results in better outcomes.
Initially, there was no place in IEHP’s service area for a child to get a comprehensive diagnostic assessment. It took until age 5 on average for families to piece together a diagnosis — and age 7 for Latino children. These lost years of early intervention were simply unacceptable.
Caring for children thought to have autism is complex, and incompatible with a fragmented system of care. In most places, children thought to have autism are sent to one specialist at a time in search of answers and help — a process that typically lasts years. With so many disciplines involved, it’s only natural that each professional sees the child through the lens of their own clinical focus rather than as part of a comprehensive, efficient way to map out a timely treatment plan optimized for each child.
Numerous conditions can appear to be autism. It’s important that children be assessed in a wide-ranging manner to identify the source of the child’s symptoms, such as early childhood trauma, intellectual disabilities, or even a genetic disorder that can cause autistic-like behavior. This means many children with similar behaviors are typically given a one-size-fits all behavioral therapy program instead of the treatment they need. For example, if the underlying cause is severe trauma or fetal drug exposure, behavioral therapies developed specifically to treat autism are inappropriate and serve only to postpone the needed care. Inadequate diagnosis has a significant cost to the public: behavioral treatment for autism can cost up to $100,000 annually.
With my program mentor’s encouragement, I formed a collaborative that brought together community-based organizations that played a role in caring for autistic children in the Inland Empire. Each member of the collaborative donated time and expertise to help us build a business plan. We designed a center where all the clinicians would be housed under one roof to collectively perform their assessments, confer, and collaborate on next steps. At the end of the day, we would provide a plan to the child’s family and health plan, which had not been done before. From the start, we kept the collaborative’s funders, such as First 5 San Bernardino, First 5 Riverside, and IEHP, deeply involved in the planning. Their participation in a transparent process gave them confidence their investment would be well spent. We raised $700,000 in seed money and received a commitment from IEHP to pay for the assessments once the center was open. Our plan was for this project to be sustainable, eliminating the need to ask funders for additional money.
Collaboration Improves Diagnoses
I’m thrilled to say that the Inland Empire AAC opened in June 2016, and since then the timeliness and accuracy of diagnoses has improved dramatically. Instead of children going from specialist to specialist across two counties, all the relevant professionals work together in one center to develop the best treatment plan for each child.
Ours was the first community collaborative to found such an assessment center with a commitment to serve all children — particularly those on Medi-Cal — thanks to IEHP. Great credit also goes to Dr. Kiti Freier Randall and her amazing team of clinicians. Kiti, a pediatric neuropsychologist affiliated with the Loma Linda University School of Medicine, not only led the design of the transdisciplinary autism assessment model but now serves as AAC medical director. With her colleagues, she created the center’s clinical architecture. While there are other transdisciplinary teams for autism, they generally aren’t readily available to Medi-Cal children. At other centers, the wait time for an evaluation can be more than a year, and the cost is often beyond the reach of families unless their local Medi-Cal plan has created access for them. Now the AAC, in collaboration with IEHP, is putting low-income children at the front of the line.
One unanticipated benefit of the AAC is that it has attracted scarce specialists, such as pediatric neurologists and developmental pediatricians, who typically would not be drawn to the Inland Empire. The formation of this elite team has made the area a magnet for some of the best clinicians in this field.
The AAC can be replicated anywhere in California. I hope others from around the state will visit so they can be inspired to establish assessment centers to open doors to low-income children and families in their areas.