Psychosocial Supports for the Physical and Mental Health of Youth with Autism and Other Neurodevelopmental Disabilities

Abstract

One in six youth has a neurodevelopmental disability (NDD), and autism diagnostic rates continue to rise. Before and after a diagnosis, families need trusted sources of guidance to navigate co-occurring medical and psychological conditions, and to manage unique stressors including transition to adulthood. However, medical professionals from all specialty areas struggle to identify resources to support the complex psychosocial and healthcare needs of these patients and their families. This primer on psychosocial supports for youth with autism will explore the major mental and physical health stressors faced by affected youth and families, and discuss opportunities for primary care and other providers to provide resources and empower their patients. Through awareness of key challenges and resources, non-specialist providers can integrate autism-specific supports into their regular practice. These same approaches will also allow providers to offer more holistic care for the broader NDD patient community as well.

Introduction

Over 20 years ago, the Centers for Disease Control and Prevention estimated that one in 150 youth had autism; most recently, that estimate is 1 in 31.¹ Perhaps even more notably, more than one in six youth are now estimated to have some type of neurodevelopmental disability (NDD), a broad category that includes diagnoses like autism, intellectual disability, learning disability, and other developmental conditions.²

While research and supports for people with autism have also increased over the last 20 years, the landscape for physical and mental health remains discouraging. Youth on the autism spectrum with and without co-occurring intellectual disability face significant unmet healthcare needs.³ Despite having increased risk for co-occurring mental health conditions, autistic youth and their families struggle to connect with providers who are willing and able to serve them.⁴ Autistic youth from underrepresented racial and ethnic groups as well as low-income families face even more significant barriers to care.⁵ To support medical professionals from all specialty areas, this resource will explore the complex mental and physical health stressors faced by autistic youth and their families, as well as discuss opportunities for primary care and other providers to empower their patients.

Medical Complexity

Up to 60% of youth with autism are medically complex, and even more notably, about 40% of all medically complex youth have autism.⁶ Co-occurring medical conditions may manifest as behavioral symptoms, (e.g., aggression, self-injurious behaviors, anxiety, inattention and hyperactivity), and treatment of these conditions can improve quality of life for both child and family.⁷ Medical providers are well-positioned to help patients and families identify possible autism, including inheritability, given family recurrence rates of approximately 20%,⁸ as well as to ensure that emerging medical challenges are not dismissed due to the presence of a known developmental diagnosis (a phenomenon called diagnostic overshadowing).⁹ For instance, people with autism face increased risk for epilepsy,^10,11 yet those symptoms may be overlooked or falsely attributed to autism.

While certainly present in neurotypical children, common medical challenges that commonly present along with autism may require special attention. For instance, sleep disorders impact between 50–80% of children and adolescents on the spectrum.^7,12 Common symptoms include bedtime resistance, sleep onset insomnia, and night-time awakenings. Though the etiology is unclear, youth with autism experience higher rates of gastrointestinal symptoms than their typically developing peers, including constipation, diarrhea, and abdominal pain.^7,13 Finally, medical professionals should also attend to significantly higher injury risk for autistic youth. These risks range from increased rates of wandering and elopement in young children¹⁴ to higher rates of suicidal ideation and self-injury for adolescents and adults.¹⁵ Youth with autism face increased risk for maltreatment,^16,17 including medical trauma, e.g., including increased rates of physical restraint during hospitalizations.¹⁸

Psychosocial Complexity

Neurodiversity

Medical providers need not be experts in autism or other neurodevelopmental disabilities to recognize and provide support for the psychosocial needs of their patients. To aid in this goal, it is important to develop an understanding of the growing neurodiversity movement, an extension of the broader disability rights movement.¹⁹ Neurodiversity refers to the idea that all human brains develop differently and are therefore different from each other. Acknowledging and embracing neurodiversity does not deny differences, or even that some differences may be disabling; rather, a focus shift towards promoting strengths and providing accommodations helps facilitate acceptance and inclusion.²⁰

Co-Occurring Mental Health

Up to 78% of youth diagnosed with autism also have one (or more) mental health conditions, compared to 14.1% of youth without autism.²¹ The actual prevalence of mental health diagnoses in youth with autism could be even higher.²² The most common co-occurring mental health conditions for youth with autism are behavior and conduct problems, anxiety, attention deficit/hyperactivity disorder (ADHD), and depression. Challenging behaviors, (e.g. tantrums, aggression, self-injury), are often the presenting problem that get autistic youth “in the door” to mental health services.²² As with physical health conditions, providers should guard against diagnostic overshadowing for mental health conditions, (e.g., attributing behavior problems to “just the autism”), which may delay access to important treatments and other support.

Caregiver Burnout

Caregivers of individuals with autism face higher levels of stress, anxiety, depression, and feelings of caregiver burnout.^23,24 Parents report challenges finding social support, childcare, and babysitters/respite care providers. We urge clinicians to consider the needs of the whole family when supporting youth with autism and other NDDs.

Autism and Developmentally-Focused Psychosocial Supports

Individuals with neurodevelopmental differences benefit from evidence-based treatments (EBTs) targeted to their specific needs. This may involve domain-specific intervention, (e.g., speech-language therapy, occupational therapy), or a broader range of developmental skills, (e.g., naturalistic developmental behavioral interventions) that support joint attention and social engagement. Regardless of the intervention target or modality, providers should advocate for strengths-based approaches, e.g., building on a child’s areas of strength, rather than just focusing on areas of weakness. Moreover, providers can emphasize neurodiversity-affirming clinical practice, which means respecting individual and family preference for the terms and language used to describe disability.²⁵ As discussed above, many people see disability as an integral part of their own self-identify and community, so providers can partner with youth and families to ensure that medical and mental health care is provided in an accessible way and aligns with their values.^26,27

Applied behavior analysis (ABA) has a strong empirical base for teaching and supporting a wide variety of skills and reducing challenging behaviors, regardless of diagnosis. However, insurance companies generally require a medical diagnosis of autism to provide coverage. Often described non-specifically as “ABA therapy” in community settings, these approaches use close observation and individualized programming to support behavior change. In response to the neurodiversity movement, there is a widespread movement in the field of ABA to adopt “neurodiversity-affirming” care practices that aims to “optimize the lives of an autistic individual without sacrificing their unique autistic self.”²⁸

Many supports do not require a diagnosis and thus may be accessed before or during referral for diagnostic evaluation. For youth from birth to three years of age, medical providers can refer for a developmental evaluation through their state’s early intervention (EI) system, such as Missouri First Steps.²⁹ Youth who meet the state’s criteria for a delay in one or more areas of development may qualify for therapies provided in their natural environment, e.g., home, childcare setting, and in partnership with the child’s family. Services may be billed to a family’s insurance, with a possible copay, or provided free of charge.

Families of youth who do not qualify for EI but demonstrate concerns that warrant intervention may need additional referrals. Many states offer parenting programs, such as Parents as Teachers,³⁰ which serves low-income households, for youth up to age five. For youth with emotional or behavioral concerns, behavioral parent training programs, such as Parent-Child Interaction Therapy,^31,32 can help parents/caregivers increase positive interactions and manage challenging behavior. Other parent-mediated interventions, (e.g. mindfulness-based, cognitive behavioral, acceptance and commitment therapy), combined with parent education and behavior management training are shown to reduce stress and increase self-efficacy in parents.²⁴ Some primary care practices offer integrated behavioral health services, which increases treatment access and improves mental health outcomes.³⁴ For school-age children and adolescents, social skills programming may also be beneficial. These services tend to be private pay, unless provided in the school setting.

Treatment of Medical and Psychosocial Complexities

Medical treatments are beyond the scope of the present review. However, significant guidance exists for clinicians on how to tailor medical and medication interventions for youth with autism and other NDDs.³⁵ Here, we focus on psychosocial supports and key referrals in the assessment and management of co-occurring conditions.

Sleep

For sleep disorders in youth, behavioral interventions are often the first line of treatment, including parental education regarding sleep hygiene, environment, and bedtime routine and working towards planned ignoring, i.e., extinction^12,36. Increasing daytime physical activity can also improve sleep in youth with autism.³⁷ Treatment with melatonin can be considered if behavioral interventions are insufficient.³⁷ Symptoms of obstructive sleep apnea (heavy, loud-mouth breathing, loud snoring) warrant referral to a medical sleep specialist. Symptoms of restless leg syndrome (intense need to move legs to get comfortable, moving frequently during sleep) warrant evaluation for iron deficiency, which can be common in picky eaters.

Gastrointestinal

Routine monitoring of gastro-intestinal symptoms is important as these symptoms can manifest as behavioral challenges, e.g., aggression, self-injurious behavior. Some contributing factors may include restricted diets (especially if entire food groups are avoided), feeding challenges, and consumption of inedible items (pica) that are common in this population. Physicians should consider nutritional evaluation and/or referral to specialty feeding clinics when concerns warrant additional evaluation, as well as evaluating for and treating constipation.

Mental Health

Youth with autism need regular screening for mental health/behavioral symptoms starting in the preschool years.²¹ Again, providers should guard against diagnostic overshadowing that might lead to untreated co-occurring conditions. For youth with co-occurring mental health concerns, referrals for psychological services may also be appropriate. EBTs for anxiety and mood concerns include cognitive behavioral therapy (CBT), behavioral and exposure-based therapies, and acceptance and commitment therapy (ACT) or other mindfulness-based interventions tailored to youth. These EBTs may require modification for youth with autism due to differences in language, social skills, cognitive, or executive functioning skills. However, PCPs should not shy away from referring to or advocating for mental health treatments simply because a child also has autism. Children with autism should not be excluded due to their diagnosis.

Caregiver Support

Caregivers may experience feelings of guilt or other barriers to asking for help—so be proactive in asking them what they need. We recommend providing information on parent support groups and community organizations geared toward parents of autistic/neurodivergent youth, such as your local chapter of the Autism Society.³⁸ Each state has at least one Parent Training and Information Center and/or Community Parent Resource Center.³⁹ In Missouri, the Missouri Parents Act (MPACT)⁴⁰ provides free information and advocates to help families navigate their child’s educational needs protected by the Individuals with Disabilities Education Act.⁴¹

Educational and Government Supports

Individuals ages three to age 21 may qualify for an Individualized Education Program (IEP) through their local school district, which does not require a medical diagnosis. Families should request an evaluation in writing and provide written consent to start the evaluation process. Youth who are not found eligible for an IEP may receive fewer intensive supports through other school-based programming, such as a multi-tiered system of supports. Students who have a medical diagnosis may also receive supports and accommodations through a 504 Plan.⁴²

Families may also access additional support through their state’s developmental disability office. Local or regional disability offices may provide a list of parent resources, and many state programs offer family services and/or financial support. Some states offer funding for respite care by a trained provider or individual selected by the family, e.g., extended family member. In Missouri, regional disability offices are run by the Missouri Department of Mental Health⁴³ and offer funding to support individuals with autism and their families through the Missouri Autism Projects.⁴⁴

Transition Considerations

Often referred to as the “services cliff,” autistic youth and their families face significant challenges in identifying appropriate supports during and after the transition to adulthood.⁴⁴ Identifying appropriate adult medical care requires proactive collaboration between the patient and family as well as existing primary care and subspecialty providers.⁴⁶ Health insurance coverage itself may add complexity, though many private health plans will allow parents to maintain an adult on their employer insurance well past the age of 18 years. However, it is important to secure Medicaid as a primary or secondary insurance provider to access other state services, e.g., Medicaid Waivers for adult services. Parents need to balance the pros and cons of keeping private insurance which can be expensive but would offer more options for doctors and specialists.

Parents and caregivers of youth with higher support needs will need to consider guardianship and/or conservatorship of their child at the age of 18, or make other legal arrangements to allow for ongoing involvement in healthcare and other aspects of life. Legal guardianship encompasses the power to make decisions for another person around topics such as personal care, welfare, living, health, and safety. However, depending on the individual, full and even partial guardianship can be limiting and restrictive. Alternatives such as Supported Decision-Making (SDM) should be considered in light of these restrictions.⁴⁷ SDM is a legal process in which the person maintains a greater level of autonomy compared to full guardianship. In an SDM arraignment, the individual retains the right to make decisions for themselves while receiving necessary support from trusted individuals they select. Each state has different laws, requirements, and procedures for obtaining guardianship and SDM, but these processes require documentation delineating the needs and capabilities of the individual, including medical evaluations, psychological assessments, and legal forms specific to the state.⁴⁸

The transition to adulthood also requires navigating complex changes encompassing school district, county, and state systems. Typically, these changes are most robust during the ages of 18–21. During this time, young people may remain eligible for a school educational plan (IEP), though services shift in focus from special education to community integration, vocational and/or life-skill training, and planning for post-secondary years. Students with lower support needs may have the option to attend formal post-secondary programs, such as community college or vocational/trade schools with varying levels of support from the school district.

For students with higher needs, the focus for the transition years is likely to be more practical, (e.g., life skills or job training), with the goal of transitioning these young adults to community programs after the age of 21. Most school district transition programs have staff who will work closely with parents to provide education/resources and write goals that address important tasks in the form of a long-term life plan. However, many responsibilities will ultimately fall to parents, and a proactive approach is critical. Medical professionals can support families by directing them to key transition planning resources, including through groups like Autism Speaks⁴⁹ and Charting the Life Course.⁵⁰

A crucial step for youth as well as adults with disabilities involves applying for benefits and Medicaid eligibility, typically through the state’s designated disability office. This can be done as soon as a disability is identified; however, services may be limited until a child reaches adulthood. The process for approval has multiple steps and requires some assessment and documentation.⁵¹ Once eligible, families will work with a service coordinator to develop an Individual Support Plan (ISP) that outlines needs as well as services being requested, such as vocational services (job coaching/training), day program, life skill training, behavioral support, therapies, respite care, and personal assistant hours. Transportation needs should be included as this can be a barrier for adults accessing services and jobs in the community. As part of a service plan, families need to consider both present and future living arrangements. This can range from independent living, supported living, group home living, cooperative living arrangements, to a full residential center depending on the needs of the adult. Because higher levels of care are very expensive, they can take time to secure (and may require significant documentation and justification). Many states prefer families to maintain adults in their home with support for as long as possible. While this arrangement has advantages, it can place a significant burden on parents as they begin to age and are not as equipped to provide daily care and support. Another challenge is the possibility of wait lists for different waivers, which can significantly delay services. Providers should encourage families to investigate financial supports through the Social Security Administration⁵² both before and after an individual with autism reaches legal adulthood.

Conclusion

Medical, psychiatric, and allied health providers need not specialize in autism or other NDDs to offer compassionate, timely, and responsive care to their patients. However, as with all clinical relationships, the best outcomes are achieved through committed partnerships and teamwork. In many cases, providers may have to expand who is on the team by seeking out consultation. Providers may need to adapt their care by partnering closely with guardians and community advocates of their adult patients. Most importantly, providers should not lose sight of the patient themselves, always seeking opportunities to support self-advocacy, health literacy, and self-determination. By leveraging resources and engaging with those who do have disability-related expertise (including parents, caregivers, and individuals themselves), providers can help patients with autism and other NDDs thrive.