Update on Autism Spectrum Disorder Part 2: Through an insurance lens

During the past 30 years, autism spectrum disorder (ASD) has emerged as one of the faster-growing diagnosed disorders of childhood. Its growth in prevalence among children has led to the need for a much greater focus on this area from not only a clinical lens, but also an insurance one.

Autism is also not just a disorder of children. According to the CDC, more than 5.4 million adults (>2% of the population) in the U.S. alone have ASD. In addition, a 2022 study found that adults with autism comprise 0.6% of the world’s adult population.

An additional concern with ASD is the many comorbidities linked to it that are known to impact the health and wellbeing of those with the disorder.

Assessing risk for ASD, however, is still inherently difficult due to the heterogeneity of its manifestations, as well as gaps in the clinical understanding of its pathogenicity, its potential comorbidities, and its variable long-term prognosis. This usually means that in addition to clinical information, social, educational, and behavioral information is routinely required in order to develop a comprehensive assessment when reviewing applications indicating ASD in the medical history.

This article, the second of two parts, provides a comprehensive review of the insurance medicine view of ASD and issues around its assessment when underwriting. To read Part I, please click here.

Applications to Insurance

As Autism Spectrum Disorder (ASD) prevalence, awareness, and research have grown over the past 15 years, so have the juvenile insurance market. In the last five years, this segment has been a leading growth sector, with annual global growth forecasted at approximately 10% to 15%.¹ This growth partly reflects increasing awareness of and knowledge about juvenile diseases in general (and ASD in particular) among insurers and the buying public, greater growth in disposable income, more options available for healthcare and therapies for younger ASD individuals, and rising healthcare costs.

Coverage needs for juveniles overall are growing quickly. Awareness and understanding are increasing of ASD as well as other chronic neurodevelopmental disorders, and of the fact that ASD’s physical and economic outcomes are similar to those of adults with critical illnesses.

This is generating rising demand for products for this age group – particularly for juveniles with special needs. Families of children with such needs are seeking insurance products that will provide appropriate and supportive treatment and management benefits. A large number of products now specifically target this demographic, and more are on the way, as families with a child who has had an ASD diagnosis may be motivated early to purchase insurance coverage for their child to guard against long-term health implications.

Understanding ASD Applicant Risk

With ASD prevalence on the rise and greater diversification of juvenile insurance products, more families are seeking long-term life and living benefits insurance options for their affected children.

Insurance companies will need to know how to stratify the risk properly for life, total and permanent disability (TPD), and critical illness coverage options.

• Mortality Risk. Overall, mortality risk for children and young adults in the general population is very low, and for children and young adults with ASD, also very low in absolute numbers. However, when compared with the non-affected segment of this demographic, the overall risk is higher.² A long-term longitudinal study following an ASD cohort found the absolute risk was about double that of the general population in the younger age group.³ Causes are often linked to injuries and accidents sustained through misadventure, or due to comorbid psychiatric, neurological, or developmental disorders.⁴
  
  With associated comorbidities, the mortality risk rises even further. Psychiatric disorders affecting mood or anxiety, for example, increases ASD mortality risk slightly,^{5, 7} but epilepsy approximately triples the risk.⁶ Evidence also shows that younger adults with ASD have higher rates of suicide attempts later in life, independent of any associated psychiatric illness.⁸
  
  
• Morbidity Risk. Many comorbid conditions occur with ASD, or ASD is a part of the wider spectrum of symptoms found in developmental situations. For example, about 40% to 50% of individuals with Tuberous Sclerosis Complex, a genetic condition where benign tumors develop in major organs such as the brain, heart, lung, and kidney, leading to potential serious effects on organ function, also have ASD.
  
  Commonly occurring comorbid conditions of ASD include:⁹
  • Neurodevelopmental disorders
    • ADHD
    • Intellectual disability
  • Psychiatric disorders
    • Anxiety and mood disorders (often worsen in adolescence and adulthood)
    • Severe aggression
    • Self-harm behaviors
  • Medical conditions
    • Epilepsy
    • Tuberous Sclerosis Complex
    • Feeding and gastrointestinal difficulties
    • Weight extremes
    • Sleep difficulties
    • Self-care challenges (e.g., dental or skin care), which can lead to hygiene-related problems

Prognosis

The natural progression of ASD generally leads to poorer outcomes for social, psychological and physical wellbeing. In some cases, through early intervention and ongoing care strategies, some with mild ASD are able to live and function a close to normal life. In others, however, the individual with ASD is unable to function independently, requires higher levels of general and mental care, and finds it difficult to obtain and maintain employment.¹⁰

Severity of outcomes can be difficult to predict accurately, especially for children under three years of age. As firm evidence suggesting clear predictive signs and symptoms is lacking, future long-term mortality, morbidity, and functional capabilities need to be extrapolated from current states of function and interventions being undertaken. Even though great improvements are possible in cases where symptoms are or become mild or may be non-impactful, a person with ASD is still likely to retain some features of the disorder as they grow into adulthood.¹¹

Prognostic Factors^{12, 13, 14}

Prognostic factors for children with ASD indicating more favorable outcomes include:

• Early intervention
• Active participation in therapies
• Higher cognitive abilities
• Ability to play
• Better verbal communication abilities
• Attempts to socialize, share, show interest in others
• Fewer or less severe comorbid conditions (e.g., less severe ADHD)
• Lack of hospitalizations related to ASD and its associated comorbidities
• Able to participate in certain mainstream activities (e.g., school)

Conversely, prognostic factors that may indicate less favorable outcomes include:

• Lack of socialization, sharing, or interest in others by age 4
• Limited verbal vocabulary by age 5
• Severe ASD symptoms
• Lower cognitive abilities (such as IQ <70)
• Comorbid conditions, genetic conditions
• More frequent hospitalizations related to ASD and associate comorbidities
• Less access to therapies / lack of therapeutic interventions
• Older age at diagnosis
• High level of care requirements

As children grow older, the focus of the above factors will evolve into areas such as schooling, independent living and function, employment, and serious co-morbid complications.

Assessment of ASD underwriting cases, both for juveniles and adults, will likely need closer and more careful review. When assessing the risk, it may be prudent to account for both baseline risk and age-appropriate prognostic markers. This more individualized approach may be more nuanced and balanced, and could increase risk assessment accuracy, especially for very young patients.

In understanding the disease, it also indicates that how a child with ASD is assessed for cover is likely to differ depending on the product. Risk appetite for traditional life and critical illness (CI) products, for example, might be different from that for TPD and CI products that include specific neurodevelopmental and juvenile benefits.