In a recent LinkedIn post, I shared how my family has been fortunate to be welcomed by a community of professionals and families that share a devotion and commitment to optimizing the lives of autistic children and adults, like my son. However, our fortunate journey is not reflective of what many families with loved ones living with autism face. There are numerous challenges: from diagnosis to provider access, resources, and a lack of integration in care solutions. Many services for those with autism are typically not covered under a family’s medical plan, leading to financial barriers. To provide an understanding of Autism Spectrum Disorder (ASD), we will discuss the impact of autism, the journey involved in diagnosis and care, the barriers faced, the system and support available, and the addressing of unmet needs.
To better understand what ASD is, we must first discuss neurodevelopmental disorders (NDDs). Resulting from complex interactions between critical genetic factors and currently unknown environmental elements, NDDs include intellectual disability (ID), ASD, and attention-deficit/hyperactivity disorder (ADHD). Individuals with NDDs can experience a wide range of symptoms including reduced emotional regulation, low muscle control, problems with social integration, and impacted learning ability. Autism is marked by impairments of reciprocal social interactions, verbal and nonverbal communication, and a markedly restricted repertoire of activities and interests. It is defined by behaviors that lead to a lack of social communication and the presence of stereotyped and repetitive behaviors. ASD typically presents during early childhood (by age 3), and in some cases, a child may display abnormality in social interactions through the first year of life.
ASD's impact and challenges
It is estimated that the annual costs for ASD including direct medical, direct non-medical, and productivity costs will be at $462 billion by 2025. ASD has a substantial impact on quality of life and is associated with comorbidities such as sleep disorders, gastrointestinal disorders, seizures, mental health, cardiovascular, and feeding issues that result in more complex care needs with risks for increased morbidity and decreased life expectancy.
In the U.S., the estimated prevalence of ASD was 3.14% among children and adolescents in 2019 and 2020, accounting for 2.6 million American children with autism. ASD is 3.8 times as prevalent among boys (4.3%) than among girls (1.1%). As these children grow into adults, the healthcare disparities have grave consequences due to delayed care from misdiagnoses compounded by aging, lack of social support sources, and mental health comorbidities. Community based research has shown that patients with autism face provider level and system level barriers to optimal care. These barriers include available communication modes with providers, stigmas about autism, understanding of sensory sensitivities and challenges navigating healthcare resources. With comorbid psychiatric conditions such as anxiety, depression, schizophrenia and bipolar disorder, we see barriers in care that stem from the siloed approach to health needs and limited availability of resources being accessed to support the care of ASD patients.
Early detection and intervention
ASD can be challenging to identify, particularly for those with a milder form of the disorder, and delays in early identification are common. There is no definitive test to confirm diagnosis; rather, the condition is identified through evaluation of behavioral and developmental factors. A common indicator for early diagnosis of ASD is delayed speech or lack of responsiveness to language in children ages 16 months to two years old. Non-specialized providers often have trouble recognizing the early indicators, leading to delays in identification and diagnosis which postpones access to needed treatment and resources.
Research centers of excellence, such as Brazelton Institute, affiliated with Boston Children’s Hospital, Boston, MA, begin their work at childbirth observing and assessing a child’s discreet behaviors. Longitudinal studies, relative to baseline results, provide a starting point against which to measure future change or continuity, as a predictor of developmental outcome. Brazelton’s work, regarded as the most comprehensive evaluation of newborn behavior, can be used by any parent, between birth and two months, to begin to understand how their child interacts with the world around them. The assessment observes how an infant responds to temperature, sound, light, etc. and identifies where a child may need more support regulating their behavior in response to the world around them. Research indicates an earlier diagnosis makes for better outcomes. Understanding early childhood development and comparative milestones can help parents and caregivers readily observe potential delays and advocate for professional support early.
Barriers to care
Individuals living with ASD, as well as their families and care givers, often experience challenges navigating systems and support in the pursuit of accessing appropriate, affordable care and resources. Receiving an initial ASD diagnosis can be a major hurdle in and of itself. Mental health professionals and psychiatrists are not generally trained to support autistic patients, resulting in misdiagnosis and delays in care. There is a shortage of available providers qualified to assess and coordinate care for those living with ASD. Once diagnosed, resources to support families navigating an ASD diagnosis can be hard to source and are often confusing to understand. In addition to general challenges, there are common disparities, including social determinants of health factors, that impact the care individuals with ASD, diagnosed or not yet diagnosed, receive. This results in worsened outcomes not only for individuals with the disorder, but also for those who care for them. Families and caregivers often experience impacts to their day-to-day lives, as well as to both mental and physical health, in the pursuit of finding sufficient care for loved ones living with ASD. This can include mental and physical health impacts, increased stress, social isolation, and productivity loss or absenteeism at work in relation to the burden of caring for someone living with ASD. Studies have shown that adults with ASD have total mean healthcare costs twice as high as those in the general population and finding that in autistic women, there are significantly less gynecological visits and cervical screenings.
Systems and supports
While there are numerous publicly and privately funded/administered programs designed to protect and provide for those affected by ASD, challenges often arise with regards to accessing, navigating, or affording care. Studies have shown that ASD kids have a significant variability in the services they can use. A study completed by Zukerman et al. identified that 17 percent of children were not using occupational or language therapy services, 50 percent were not using any behavioral services, and 1 in 10 with severe autism, were not seeing medical specialists at all. For Medicaid beneficiaries with ASD, individuals must first receive a formal diagnosis before becoming eligible for any public resources; families then join a waitlist to be assigned a case manager before support begins. For families that self-fund care, the out-of-pocket annual costs for education alone can range from $15,000 to over $100,000 per year creating significant financial investment and burden relative to caring for individuals with ASD.
There are 57,000 board-certified behavior analysts (BCBAs) in the U.S., not nearly enough to support the need of providers treating this population. School-based support for children eligible for Individualized Education Plans (IEPs) and 504 plans, is available to provide necessary accommodations, but staffing shortages and lack of specialized training make it difficult to implement these programs to fidelity. While it is beneficial to establish an IEP plan, and potentially “mainstream” some children, local government and school districts may be reluctant to acknowledge the need for a child to be educated outside of the public school district. There are complicated dynamics, particularly around budget transfers, that exist in each district.
Charter schools and private education centers exist to provide an alternative education setting specifically for individuals living with ASD; unfortunately, these schools can have high tuition and fees making them nearly impossible to access for most families caring for someone with ASD. Overall, there is a staggering disparity between the resources needed to sufficiently support individuals living with ASD and their families and the equitable access to these resources to achieve a high quality of life and successful ASD outcomes.
It is clear there is a large and unmet need to better serve the population of individuals living with ASD and the families who support the care they receive. Early identification is a critical factor for early intervention and treatment. Equipping parents and caregivers with the knowledge about what signs to look for, and steps to take with their primary care provider to ensure their child gets proper evaluation for suspected ASD, can help early detection. Despite best efforts, some pediatricians are not as well trained or attuned to these early signs. Additional training in medical school, and on-going continuing education could be helpful. While signs may appear, there is a reluctance to acknowledge that there is a more than likely diagnosis of autism. Parents are frustrated because they go to their pediatrician with valid concern and are placated by clinicians who miss a diagnosis because of lack of training. This delays getting the care that is needed and required. Once the child reaches school age, parents and school staff will need to be prepared to navigate school-based systems, IEPs and 504 plan distinctions within the school system that mandate the necessary accommodations for those with ASD.
Community-based resources and other funded programs to support those living with ASD throughout the course of their lives are essential. Support for activities of daily living, social and emotional development, decision making, and other life skills designed to prepare and support individuals living with ASD from childhood through adulthood is another large area of opportunity.
With healthcare solutions coming into the market to facilitate resources and therapies to support autism, we have seen a growth in private equity-based solutions that leverage sensory therapy to address nervous system hyperarousal, telehealth services to support at-home applied behavioral analysis (ABA) therapy sessions, and ABA providers with home-based and center-based training for parents.
Access to, and ease of use of the full continuum of care is essential for success and meeting the needs of individuals and families affected by Autism. The continuum of care includes, but is not limited to ABA, Occupational Therapy (OT), Physical Therapy (PT), feeding therapies, as well as other emerging holistic treatments. In addition, there are related considerations around how autistic individuals metabolize processed foods and their distinct nutritional needs.
The growth in these types of solutions supports the need to construct value-based arrangements that encompass a whole health approach, especially given the bidirectional impact between autism and comorbidities impacting the overall care, quality of life, cost of care, and impact to patients, families, and caregivers. Real questions remain around the access and contracting of care regarding needed neurodiversity services. Too frequently, payors are contracting qualified providers on an in-network basis. There must be alignment and accountability by employers/plan sponsors to the insurance companies to make sure that needed in-network access is available through qualified providers. In this case, access and contracting need to be defined as encouraging and enabling “one stop shopping” for the full array of needed therapies in instances where the given provider is competent in all areas. All too often, payors choose to contract for less than the full spectrum of therapies with a given qualified provider and instead “split services” among differing providers. This affects a family’s ability to “make needed care happen”, adversely affects continuity and quality of care, and creates unneeded trauma for the patients. It also leverages the ill effects of the limited number of available appointments of multiple provider types across multiple non-affiliated locations. The lack of clarity on this process raises many health equity questions and places an undue burden on families already struggling to access optimal care for their loved ones.
Serving the neurodiverse population across the full continuum of care requires individualized and integrated treatment plans. Families are only as healthy as their least healthy family member. It is therefore important to ensure that plan sponsors and payors are providing all needed and appropriate care, rather than stopping at merely providing benefits. It behooves us as a society, as well as members of the healthcare industry to continue looking for solutions that will provide optimal and affordable care, and improve the quality of life for individuals with ASD and their families.