HJAR Mar/Apr 2025

AUTISM CARE 12 MAR / APR 2025 I  HEALTHCARE JOURNAL OF ARKANSAS Building a Better System: How Arkansas Can Improve Autism Care ByMaya Lopez, MD Autism spectrum disorder (ASD) sur- veillance in Arkansas for the past 18 years has established that the estimated number of children and adolescents who are iden- tified with this condition in the state has tripled, from 1:145 in 2002 to 1:42 in 2020. 1,2 This sharp increase has brought on an epi- demic of need for autism care to our state healthcare systems. ASD is a chronic condi- tion that is primarily diagnosed by the elic- itation and documentation of clinical and behavioral features. While we have specialty developmental centers, such as the Dennis Developmental Center and the Schmieding Developmental Center at UAMS, that pro- vide diagnostic evaluations, the demand has greatly outstripped their capacity. The lack of a biomarker obliges that diagnosis is established by lengthy multidisciplinary team evaluations with specially trained cli- nicians, resulting in long wait lists, delayed identification and intervention, and, in turn, suboptimal outcomes for these children. Given that Arkansas has longstanding over- all shortages in healthcare workforce, it is critical to recognize that we will not be able to provide appropriate care to these chil- dren unless we innovate. 3,4 The Potential Role of the Primary Care Provider Surveillance data indicates developmen- tal concerns are noted by parents as early as 12 months of age, yet age of diagnosis is stalled at around 48 months. 1,2 During this period, families are often in regular contact with primary care providers (PCPs) who can conduct screening, diagnose, and guide the family to resources. Given the importance of early intervention, PCPs should not wait for a formal autism diagnosis before referring the child for developmental evaluation and intervention. The child may already qualify and benefit from receiving traditional thera- pies (e.g., physical, occupational, develop- mental, speech-language) based on their developmental delays. It should be noted that behavioral approaches that target the child’s social skills (e.g., Early Start Den- ver Model, Discrete Trial Training, Pivotal Response Treatment) are not widely used in preschool or childcare programs here in Arkansas. Previous studies have established the benefits of using these approaches. 5 Early intervention for young children who have symptoms of autism can be signifi- cantly optimized if teachers, therapists, and caregivers incorporate these behavior approaches in the child’s daily activities and routines. Even though PCPs understand the impor- tance of early intervention, they are strug- gling to provide care to children with autism in the primary care setting. 6,7 PCPs acknowl- edged deficiencies in their knowledge and confidence in autism symptomatology and in managing behavioral and medical comorbidities of autism as common issues that hinder their ability to diagnose and manage children with autism in their clinic. Additionally, lack of previous training and lack of access to autism resources were also cited. In terms of clinic support, inadequate reimbursement schemes as well as lack of support to provide care coordination were obstacles identified in providing appropriate care. While PCPs are positioned well, they need training and continual support to be knowledgeable and confident providers for children with autism in primary care. Don’t Use a Shotgun Approach Clinicians have recognized that approaching each child who presents with symptoms of autism with the exact same battery of tests is not the best use of resources. There is a subset of the autism population, estimated at 40%, who are described to have a “frank” presentation. 8 This presentation is quickly recognized by diagnosing clinicians who note apparent impaired social reciprocity in these individ- uals. Given that their symptoms are overt, it may be easier to clinically diagnose those who have a franker presentation and may be accommodated in the primary care setting, whereas those who have less obvious symp- toms would need more intensive evaluation and can be referred to a specialty diagnostic clinic. A tiered approach to autism evalua- tion using the child’s symptom presenta- tion to filter patients and involving partner- ships with PCPs and specialists has been presented as a potential solution for timely diagnosis and increased access to care. 9 A tiered approach was implemented in Indi- ana by creating the “Early Autism Evalua- tion Hub” system. 10 Their findings suggest that this approach is feasible in cost yet still provides appropriate care. Helping Families Navigate Families experience multiple delays as they pursue a diagnosis for their children (e.g., long waitlists, needing to see several professionals before receiving the diagno- sis). 11 Parents report feelings of being alone and troubled with educating themselves on how best to care for their child. They have suggested that a single stop for therapies, access to care coordination, and having advisor/mentor may be helpful. 12 Fam- ily navigation is designed to help families overcome barriers to getting a diagnosis and accessing autism services by provid- ing them with information and guidance that is tailored to the family’s needs. There is evidence that children who receive fam- ily navigation support were signi cantly more likely to complete an ASD diagnos- tic assessment than children who received routine clinic care. 13 In one study, a higher proportion of families who received family navigation support completed their diag- nostic evaluation within a year compared to families who had conventional care man- agement: 85.7% versus 76.4%. 14 Re-Modeling to Increase Access to Autism Care in Arkansas Currently, most children and adolescents