Inclusivity and Equality in Treatment: Transforming Health Care, One Step at a Time

Access to health care is a fundamental human right. Creating an equitable health care system requires that all aspects of an individual’s health – physical, mental, and emotional well-being – be addressed holistically. Individuals with autism spectrum disorder (ASD) and intellectual and developmental disabilities (IDD) face significant health care disparities in access to medical and behavioral care, which can adversely impact their overall well-being, quality of life, and ability to participate fully in society. These disparities are complex, overlapping with issues of communication, cultural and linguistic challenges, socioeconomic barriers, and systemic biases in our existing health care system.

Little child girl with her mother at a doctor on consultation

It is very clear that for children with ASD and IDD, early intervention is crucial in addressing developmental delays and improving long-term outcomes. Inadequate health care means lost opportunities for these early interventions, resulting in more significant and persistent developmental challenges. These can impact their ability to acquire crucial life skills, affect educational attainment, and reduce opportunities for independent living and employment in adulthood.

We also know that inadequate health care can lead to worsening behavioral issues in individuals with ASD/IDD. Without proper support and intervention, behaviors such as aggression, self-injury, and severe communication difficulties may become more pronounced.¹ These behaviors can increase isolation from social, educational, or vocational opportunities and strain family/caregiver relationships. Additionally, negative health care experiences can lead to increased stress and trauma, creating a cycle of healthcare aversion.

What is needed is a multi-faceted approach to address these disparities, including specific initiatives, specialized training for healthcare providers, increased funding, community education, policy reforms to ensure better coverage and support, and a shift towards a more comprehensive, accessible, and responsive system of care.

Health Care Disparities and Barriers

There is considerable data highlighting the disparities in healthcare access and quality of care for individuals with ASD/IDD. Even though autism can be diagnosed as early as two years old,² on average, children with autism tend to be diagnosed after age four, and studies have shown that Black and Latino/Hispanic children are diagnosed with autism later than White children, often missing crucial early intervention opportunities.³ In marginalized communities, these disparities stem from many social, economic, cultural, and systemic factors.

Individuals with ASD/IDD are more likely to experience a variety of co-occurring medical conditions compared to the general population.⁴ Some of the most common of these include sleep disorders, epilepsy, and gastrointestinal disorders – timely diagnosis and appropriate treatment of these conditions can be complex. Many individuals with ASD may have trouble communicating their symptoms, leading to delays in receiving proper care. Physical discomfort caused by these underlying conditions can, at times, manifest as changes in behavior, such as increased irritability, aggression, self-injury, or repetitive behaviors, which may be misinterpreted as solely related to ASD/IDD rather than an underlying medical issue.

There is also a high prevalence of co-occurring mental health conditions, such as ADHD, anxiety, or learning disabilities, which can complicate the assessment and diagnostic process, leading to inappropriate interventions or a lack of support and services for the underlying ASD/IDD.^{5 6} Accessing appropriate mental health care can be very challenging because of factors like accessibility, cost, family and individual knowledge, language barriers, and stigma.^{7 8}

Effective diagnosis, treatment, and support for ASD/IDD face several barriers that can significantly influence the quality of care and the overall well-being of individuals with ASD/IDD. These barriers are often interconnected and can be categorized into the following areas:

1. Financial Barriers:

All too often, families with lower socioeconomic means face greater financial challenges when having to access assessment, diagnoses, treatment, and support services that unfortunately lead to disparities in care and outcomes. Interventions, such as behavioral, speech, and occupational therapy, can be prohibitively expensive, especially if not covered by insurance, leading to costly out-of-pocket expenses. Insurance coverage for autism-related treatments can often be inadequate, and coverage can vary significantly between policies, leaving many essential therapies and supports not covered. Additionally, insurance policies may not cover all aspects of the diagnostic evaluation, particularly in-depth assessments needed for complex cases, and this can delay or prevent families from seeking care.

2. Geographical Barriers:

Many rural or remote areas have limited access to specialized assessment, diagnostic, treatment, and support services. Moreover, there are fewer adequately trained health care providers to identify ASD/IDD, particularly in its less obvious forms or when it co-occurs with other conditions.⁹ These geographic barriers also lead to travel/transportation barriers when accessing specialized services, which adds to financial and time burdens for many families/caregivers.

3. Cultural Barriers:

Stigma and lack of awareness about ASD/IDD and its symptoms can delay parents or caregivers in recognizing and responding to early signs and seeking appropriate support and early intervention services. There are cultural beliefs and stigma surrounding ASD/IDD – particularly pronounced among racial/ethnic minorities and immigrant families – which can influence how symptoms are perceived and addressed and can impact engagement with the healthcare system. Frequently, non-English speaking families struggle to access services, communicate with physicians, and navigate complex administrative processes, limiting their understanding of treatment options and their ability to advocate for their loved one’s needs.

4. Systemic Barriers:

State and federal variability in policies and legislation can affect the availability and quality of treatment and support services for those individuals with ASD/IDD. Furthermore, the complexity of the health care and educational systems can be overwhelming, especially for families new to the diagnosis or those with limited resources and health literacy.

The health care system often lacks the necessary accommodations for sensory sensitivities and communication needs, making medical environments overwhelming and inaccessible for many on the spectrum. Navigating Individualized Education Programs (IEPs) and accessing appropriate school-based services can be very challenging, often requiring significant advocacy by parents.

Best Practices and Strategies

Equitable and inclusive health care for individuals with ASD/IDD requires a focus on individualized care, person-centered approaches, specialized training, and interdisciplinary teamwork tailored to the individual and the family/caregiver’s unique needs.

1. Individualized Care:

Individuals with ASD/IDD present with unique sets of strengths, challenges, and healthcare needs. What is needed are care plans that are individualized, dynamic, and capable of adapting to the individual’s changing needs over time, especially as they transition through different life stages. It is critical to involve the individual and their family/caregivers in developing the care plan, thus ensuring that it aligns with their preferences, values, and goals – fostering true collaboration and a greater sense of agency.

2. Person-Centered Approaches:

Healthcare providers need to understand how to respect and promote the autonomy of individuals with ASD/IDD, recognizing their capacity to make informed decisions about their care. Often, providers will need to figure out how to adapt their communication strategies to meet the individual’s needs, including visual aids, clear and concise language, or alternative communication methods for those with speech and language difficulties. Healthcare environments and procedures should be adjusted and adapted to account for sensory sensitivities common among individuals with ASD/IDD, such as lighting, sound, and touch preferences.

3. Interdisciplinary Approach:

An interdisciplinary team – doctors, nurses, therapists (speech, occupational, behavioral), psychologists, social workers, and other specialists – is required to provide holistic care.

A team approach, incorporating insights from various specialties such as psychology, neurology, occupational therapy, and speech therapy, facilitates shared decision-making, ensuring that different perspectives and expertise are considered in developing and implementing care plans. Coordination and communication among team members are necessary to ensure that all aspects of the individual’s health needs are coordinated, avoiding fragmented or ambiguous care.

4. Continuous Training and Education:

Healthcare providers must engage in enhanced/specialized training to foster a deeper understanding of the complexities of ASD/IDD, including its varied presentations, co-occurring conditions, and the latest research in the field. Specialized training allows for more accurate and timely diagnosis, critical for accessing early intervention services and ensuring that treatments and interventions are appropriate and effective. Specialized training also raises awareness of the specific challenges faced by individuals with ASD/IDD, including sensory sensitivities and social communication difficulties, leading to more person-centered and compassionate care.

The Autism CARES Act (Collaboration, Accountability, Research, Education, and Support) supports training programs and initiatives to improve care for individuals with ASD, funding various training initiatives, research projects, and centers of excellence in autism care.
American Academy of Pediatrics (AAP) Guidelines provide guidelines and training resources for pediatricians on screening, diagnosing, and managing ASD, promoting early identification and intervention.

The consequences of an inequitable healthcare system for individuals with ASD/IDD and their families are profound, impacting the mental, physical, and emotional well-being of the individual, but also the overall functioning and stability of their families and communities. Ensuring equitable healthcare for individuals with ASD/IDD is not only about health and well-being but also a critical element of social justice, economic efficiency, and societal progress.

These effects underscore the need for a holistic and adaptable health care approach that addresses individuals’ unique and evolving needs throughout their lifespan. Addressing these will require greater awareness and education about ASD/IDD across the board, enhanced cultural competence and linguistic accessibility in healthcare services, more equitable distribution of resources, and advocacy for policy changes that increase access to comprehensive diagnostic and intervention services.

By working together, healthcare providers, policymakers, and communities can make significant strides in overcoming the challenges faced by autistic individuals and move towards a more effective, equitable, and supportive healthcare system.

Call to Action

Health Care Providers:

Commit to ongoing education and training in ASD/IDD care.
Embrace person-centered approaches and collaborate with interdisciplinary teams to ensure holistic care.
Advocate for and implement practices that accommodate the unique needs of individuals with ASD/IDD and their families/caregivers.

Policymakers:

Recognize and address the healthcare disparities facing individuals with ASD/IDD.
Enact policies that ensure accessible, affordable, and high-quality healthcare services.
Support funding for autism research, training programs, and resources that facilitate early intervention and long-term support, especially among racial/ethnic minority groups.

Communities:

Foster a supportive and inclusive environment for individuals with ASD/IDD and their families.
Promote awareness and understanding of ASD/IDD to reduce stigma and facilitate better integration and participation in community life.
Support local initiatives and organizations that provide services and advocacy for individuals with ASD/IDD.

Resources

Jorge R. Petit, MD

Jorge R. Petit, MD, is a Behavioral Healthcare Leader, Author, and Founder/CEO of Quality Healthcare Solutions, LLC. Dr. Petit is also a long-time Board Member and past Chair of Mental Health News Education, the publisher of Autism Spectrum News and Behavioral Health News. For more information, visit his website: www.drjpetit.org, blog: Behavioral Health: Matters, LinkedIn: Dr. Jorge Petit, MD, or Substack: drjrpetit.substack.com.