Inadequate Healthcare Services Among Individuals with Autism in the United States

Photo by Luis Melendez on Unsplash

By Gabby Sutton-Clark

Published Fall 2022

Special thanks to Erica Bassett for editing and research contributions.

Summary+

Healthcare innovation has been a pressing topic in public discourse across the United States for centuries. Advances have taken place in several healthcare fields, such as maternal and fetal medicine, cardiology, and surgical specialties; however, healthcare for individuals with Autism Spectrum Disorder (ASD) has not received the same attention and care. A general lack of access to healthcare services, communication barriers, lack of ASD-specific provider training, and the physical healthcare environment all contribute to the inadequate healthcare experiences and services individuals with ASD receive. As a result, individuals with ASD not only seek healthcare less frequently for their health concerns but also feel far less confident in their healthcare provider’s ability to provide quality care. As a direct result of this inadequate healthcare, the physical well-being and overall quality of life of individuals with autism suffer disproportionately. Improved medical training for healthcare providers and ASD-supporting medical programs may alleviate this issue and address the unique healthcare needs of this population.

Key Takeaways+

• Healthcare services for individuals with ASD are not as accessible as for those without ASD. These services include routine healthcare that all individuals benefit from, such as immunizations and testing.
• The quality of healthcare services for patients with ASD is lesser due to sensory challenges and lack of research and provider training.
• ASD is diagnosed at a higher rate among Caucasian males, but diagnoses are often missed in women and among individuals of lower SES.
• Inadequate healthcare for individuals with ASD has substantial individual, familial and societal consequences.
• Due to ASD being a “spectrum” disorder, the communicative, sensory, and social experiences of individuals with ASD vary, making flexibility in healthcare protocols essential for best-serving patients with ASD.

Key Terms+

Autism Spectrum Disorder (ASD)—Autism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements. ¹

Comorbidities—Health conditions that commonly co-occur with another health condition. ² Several comorbidities often occur with autism, specifically including gastrointestinal issues, seizures, and sleep disorders. ^{3, 4}

Developmental-Behavioral Pediatrics—A medical subspecialty of pediatrics that focuses on diagnosing and treating concerns related to growth and development in children. ⁵

Healthcare Providers—Credentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists.

Neurotypical—Behavior that is consistent with typical neurological and developmental function. ⁶ This term is commonly used to contrast behaviors between individuals with autism and their (neurotypical) counterparts without autism. ⁷

Context

Q: What is autism spectrum disorder (ASD)?

A: ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ is a neurodevelopmental disorder characterized by social, communication, and behavioral challenges.⁸ Many individuals on the autism spectrum also experience sensory challenges.⁹ As the fastest-growing developmental disorder in the US, ASD now affects approximately 1 in 44 children in the US, although estimates vary.¹⁰ Current estimates indicate that ASD prevalence has increased 241% since 2000.^{11, 12} There is no single known cause of ASD; instead, current research credits several factors, including genetic and environmental factors, that may cause ASD.¹³

Q: How is ASD diagnosed and treated?

A: While there are no known medical tests that can reveal this disorder on a biological level, ^{14, 15, 16} medical providers can make diagnoses by gathering a patient’s developmental history, closely observing behaviors, and noting patient and caregiver descriptions of symptoms.¹⁷ To be diagnosed with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹, individuals must exhibit persistent deficits in the three following areas: social, communication, and behavioral.^{18, 19} Some examples of social deficits include a lack of interest in other’s interests or conversations, difficulty understanding social cues, lack of eye contact, and difficulty with social-emotional reciprocity.^{20, 21} Some behavioral symptoms of ASD include repetitive movements, fixation on certain objects or specific routines, difficulty with transitions, aggressive outbursts, increased or decreased sensitivity to sensory stimuli, and hyperactive or catatonic (unresponsive) behavior.^{22, 23} Some communication symptoms of ASD include delayed or absent speech, repetitive phrases, difficulty regulating volume, as well as monotone or other atypical vocal tones and vocalizations.²⁴ It should be noted, however, that symptoms of this condition occur on a spectrum, meaning every individual with ASD is unique in their specific presentation and severity of symptoms.^{25, 26} As such, some individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ may exhibit minor symptoms with no significant barriers to daily functioning, while others experience severe challenges that significantly impact daily functioning.²⁷

Given symptoms of ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ occur on a spectrum, treatments for ASD are often determined on a case-by-case basis after evaluation from several providers.²⁸ Common treatments for ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ specifically include behavior and communication therapies such as speech and language therapy, which focuses on the patient’s language use and comprehension skills. Another treatment option is applied behavior therapy (ABA), which uses positive reinforcement to teach patients new skills that can be applied to multiple situations. Educational treatments and home treatments are also available outside the provider’s office.²⁹ Finally, medications may be appropriate to manage an individual’s ASD symptoms, from antidepressants for an individual’s anxiety to prescriptions for an ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ patient’s potential comorbiditiesHealth conditions that commonly co-occur with another health condition.² Several comorbidities often occur with autism, specifically including gastrointestinal issues, seizures, and sleep disorders.^{3, 4}, such as gastrointestinal problems or seizures.^{30, 31} While there is no cure for ASD, these treatments seek to alleviate symptoms and facilitate a life of independence for individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹.³²

Q: What is considered “adequate healthcare?”

A: Adequate healthcare refers to the ability of an individual to access and receive healthcare that addresses any physical and mental health condition in need of treatment. For this discussion, adequate healthcare refers to individuals with autism having access to the same healthcare opportunities as their neurotypicalBehavior that is consistent with typical neurological and developmental function.⁶ This term is commonly used to contrast behaviors between individuals with autism and their (neurotypical) counterparts without autism.⁷ counterparts. These healthcare opportunities may relate to ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹-specific care, such as ASD diagnosis. However, this brief will refer to individuals with ASD receiving ASD-specific care, especially ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ diagnosis, and general medical treatment often unrelated to ASD, such as bloodwork and regular checkups.

Adequate healthcare can be further defined by the six following characteristics: effectiveness, efficiency, equity, patient-centeredness, safety, and timeliness.³³ An example of healthcare that qualifies as effective is when patients receive healthcare based on current best practices in medicine that providers integrate into their treatment plans.³⁴ An example of patient-centeredness is the referral process, in which one provider refers a patient to another specialized provider to ensure the patient receives care that meets all of their healthcare needs.³⁵ For instance, a primary care provider or pediatrician may refer a patient with autism to a gastroenterologist to manage ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹-related gastrointestinal issues.³⁶ Finally, an example of timeliness is the diagnostic process, with shorter diagnostic time periods and fewer visits. For the purposes of this brief, any healthcare providerCredentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists. that does not meet all six criteria is considered inadequate healthcare.

This brief will not discuss the mental healthcare of patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ because treatment options for mental health vary significantly from standard treatment protocols for physical health conditions. For example, while psychotherapy is a frontline treatment for a variety of mental health conditions, it is not a frontline treatment for physical ailments. Furthermore, while mental health experts often address psychological symptoms of ASD, this brief is focused primarily on the physical symptoms of ASD, and the challenges patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ face in seeking this physical healthcare. This brief will also not discuss care provided via telehealth—or other electronic, remote care platforms—as they are newer developments in healthcare and contain their own unique barriers to care (i.e., a lack of or limited access to electronic devices, internet connectivity issues, limited and misdiagnoses due to a lack of technical competency and comprehensive physical examinations).³⁷ Instead, this brief will solely address inadequate, in-person healthcare.

Q: Who is most affected by ASD and this lack of adequate healthcare?

A: ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ affects certain demographics more than others, thus leading to disproportionate impacts on one’s healthcare experience. For instance, ASD is found in all ethnic groups but has a slightly higher prevalence among Caucasians.^{38, 39} Specifically, it is found 1.1 times more often in Caucasians than black individuals and 1.2 times more common in Caucasians than Hispanics.⁴⁰ Research suggests that a possible reason for a higher incidence of ASD among certain ethnic populations may be more closely related to socioeconomic status rather than genetic factors. As such, children from ethnic or racial minority groups, lower income backgrounds, and rural regions experienced the most profound delays in diagnosis and were less likely to seek specialized healthcare services compared to children of the same age but of a higher socioeconomic level.^{41, 42, 43, 44, 45, 46}

For example, ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ is diagnosed 4 times more often in males than females.⁴⁷ Research suggests that some reasons for this disparity in ASD diagnoses between males and females include the tendency for females to display fewer restricted interests or repetitive behaviors than males and exhibiting more socially accepted interests.⁴⁸ Another reason for this diagnostic disparity between males and females is the tendency for females with ASD to mirror the behaviors of their neurotypicalBehavior that is consistent with typical neurological and developmental function.⁶ This term is commonly used to contrast behaviors between individuals with autism and their (neurotypical) counterparts without autism.⁷ counterparts, effectively lowering the diagnosis of ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ with lesser symptoms.^{49, 50, 51} The reasons behind this diagnostic disparity indicate why females with ASD may be less affected by inadequate healthcare than males with ASD in the US.

Q: Who typically provides care for individuals with ASD?⁵²

A: Individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ often require a diverse healthcare team to address their healthcare needs. Some of these providers include primary care providers, neurologists, developmental-behavioral pediatricians, gastroenterologists, and physical therapists.^{53, 54, 55} One specific provider, a developmental-behavioral pediatrician (DBPA medical subspecialty of pediatrics that focuses on diagnosing and treating concerns related to growth and development in children.⁵), treats developmental concerns like ASD in children.⁵⁶ DBPs are pediatricians who undergo an additional 3 years of subspecialty training in developmental and behavioral concerns in children.⁵⁷ Of an estimated 33,620 pediatricians in the US,⁵⁸ less than 750 are board-certified DPBs;⁵⁹ and over the next decade, approximately one-third of existing DBPs expect to retire.⁶⁰ These shortages affect who is able to provide care for individuals with ASD and how often.

Q: What is the history of ASD in the United States?

A: In the early twentieth century, researchers and the general public associated symptoms of autism with schizophrenia and other severe psychiatric disorders. In 1911, a psychiatrist from Switzerland first coined the term “autism,” but this term did not identify ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ as its own disorder. As a result of this association between autism and schizophrenia, treatments in the early 1900s included electroconvulsive therapy (a treatment in which electric pulses were sent through an individual’s body, inducing brief seizures and hypothetically altering one’s brain chemistry) and other treatments.⁶¹

Throughout the twentieth century, autism’s definition evolved to refer to social or emotional problems in children rather than a psychiatric condition. In 1943, Dr. Leo Kanner first described autism as a social and emotional disorder. Further research sought to address the causes of autism. For instance, researchers from the 1950s to the 1970s hypothesized that autism was caused by apathetic mothers, leading to treatments such as removing the child from their home. These efforts to alleviate symptoms of autism and understand its root causes culminated in harmful treatments, including physical restraints, shock therapy, and others.^{62, 63} Ongoing research later disproved these theories because autism was increasingly linked to biological factors such as brain development.⁶⁴

In 1980, ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ was officially classified in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as its own developmental disorder.^{65, 66} Later editions of the DSM recognized autism as a spectrum of developmental behaviors and conditions ranging from mild to severe.⁶⁷ These editions also broadened diagnosis criteria, increasing the diagnosis of autism in the US to 1 in 1,400. With the US Department of Education’s 1991 ruling that children with autism qualify for special services, the number of children diagnosed with autism has grown over the years.⁶⁸ In 2013, the DSM introduced the term autism spectrum disorderAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ (ASD) with two criteria: “persistent impairment in reciprocal social communication and social interaction” and “restricted, repetitive patterns of behavior.”⁶⁹

While no standard treatment for ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ exists, treatments today target symptoms and behaviors from multiple angles. Examples of treatment are applied behavioral analysis (ABA) therapy, speech and language therapy, cognitive-behavior therapy (CBD), and medication.^{70, 71} Although advocacy groups are challenging the efficacy of treatments like ABA, these treatments are widely recognized and utilized and are the leading treatments for behavioral components of ASD today.^{72, 73}

Q: Where is this issue most prevalent in the US?

A: There is an overall lack of autism services in both rural and urban areas in the United States, with 83.86% of US counties lacking ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ diagnostic services.⁷⁴ While there is a slightly stronger correlation between ASD diagnosis in urban areas versus rural areas (1.0% and 0.9%, respectively),⁷⁵ this prevalence may have less to do with urban regions having higher concentrations of individuals with ASD compared to rural regions but rather, may be due to advanced screening and diagnostic resources within rural regions that are able to detect ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ at a higher rate.^{76, 77} While it is difficult to determine if there is a significant difference in ASD population density in urban versus rural regions, individuals with ASD in rural regions face additional barriers to accessing healthcare than their urban-based counterparts.

Photo by Jonatan Lewczuk on Unsplash

Photo by Johannes Hurtig on Unsplash

As for healthcare itself, rural communities seem to be disproportionately affected by a decreased level of access to quality healthcare.⁷⁸ Furthermore, 35% of individuals with ASD living in rural regions reported significant difficulties accessing services due to a lack of available services compared to 23% of individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ living in urban areas.⁷⁹ In lieu of these services, some parents in rural areas refer to schools as an indirect health system.⁸⁰ As such, in rural areas, 88% of parents of youth with ASD report communicating with their provider about their child’s needs, while 93% of parents of youth with ASD in urban areas report communicating with their provider regarding their child’s needs.⁸¹

Contributing Factors

Access to Healthcare Services

One of the overarching barriers to quality healthcare for individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ is the overall accessibility of qualified healthcare providersCredentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists. and the proximity of medical facilities themselves. This accessibility can be further divided up into provider shortages and inadequate transportation, both of which impair an individual with ASD’s access to healthcare services.

Shortage of Providers

A shortage of healthcare providersCredentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists. contributes to the lack of adequate care for individuals with autism as it decreases access to the general and specialty healthcare providers who treat patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹. It is currently estimated that by 2034 there will be a shortage of 37,800–124,000 physicians in both primary and specialty care settings in the United States.⁸² With the COVID-19 pandemic significantly exacerbating this shortage, 47% of US healthcare workers plan to leave their current roles in healthcare by 2025.^{83, 84} Additionally, due to the pandemic, 58% of surveyed practices reported increased wait times to access their services.⁸⁵

With such profound shortages in healthcare providersCredentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists. overall, underserved populations such as individuals with autism suffer disproportionately due to a lack of access to qualified providers who can address their complex healthcare needs.⁸⁶ While DPBs can be a beneficial resource for children with ASD, a national survey of 40 children's hospitals reported that developmental-behavioral pediatricsA medical subspecialty of pediatrics that focuses on diagnosing and treating concerns related to growth and development in children.⁵ was the highest-ranked subspecialty and reported their shortages negatively affected their ability to deliver healthcare.⁸⁷ The significance of this for patients with ASD is that one of the top specialties dedicated to caring for individuals with developmental concerns like autism is the one specialty with the highest rate of access and healthcare delivery barriers. In addition to DBPA medical subspecialty of pediatrics that focuses on diagnosing and treating concerns related to growth and development in children.⁵ shortages, developmental pediatrics also had the second-longest reported wait time for evaluations at 18.7 weeks, closely following the longest reported wait time of pediatric genetic counseling, another subspecialty in high demand for diagnosing patients with suspected ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹,⁸⁸ with a wait time of 20.8 weeks.⁸⁹ Because the two specialties with the longest wait times are both in high demand for patients with ASD in both diagnosing and treating ASD symptoms long term, most individuals with autism do not have access to the comprehensive healthcare they need.^{90, 91, 92}

Transportation

Due to limited research on the nationwide experiences of individuals with autism and transportation challenges, this section will refer primarily to an infrastructure and transportation report of New Jerseyan participants.

Transportation issues contribute to a lack of access to healthcare for individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ as they decrease physical accessibility to healthcare facilities. A study of surveyed New Jerseyan participants (who either had ASD or were family members of individuals with ASD) reported several transportation issues: judging distance and speed of cars, issues with loud traffic, difficulty navigating public transit, using directions or maps and planning public transportation trips, to name a few.⁹³ These challenges to transportation persist via both public and private forms of transportation. As a result of these public transportation barriers, 97.6% of surveyed New Jerseyans with autism reported relying on others for a ride to important activities such as school, work, social events, and healthcare-related trips.⁹⁴ As for medical and healthcare appointments, 61.6% of respondents reported relying on others for transportation.⁹⁵ However, 72.8% of surveyed participants reported missing activities (including but not limited to medical appointments) at least some of the time due to the unavailability of these individuals to provide transportation.⁹⁶ Furthermore, compared to their neurotypicalBehavior that is consistent with typical neurological and developmental function.⁶ This term is commonly used to contrast behaviors between individuals with autism and their (neurotypical) counterparts without autism.⁷ counterparts, which generally express confidence in traveling independently, individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ in one study reported mixed levels of confidence due to several challenges with transportation.⁹⁷ The transportation challenges hinder an individual with ASD’s ability to access healthcare services.

Distance to facilities is an additional complicating component of accessing healthcare facilities for individuals with autism, particularly in rural regions. On average, it is estimated that US residents travel approximately 9.9 miles one way to access healthcare facilities.⁹⁸ While this distance may be overcomeable by some, individuals in rural regions, on average, travel more than twice the distance than their urban-living counterparts (17.8 and 8.1 miles one-way, respectively).⁹⁹ In these underserved regions, waitlists are longer, and 42% of rural-living citizens report “having to travel to another city for a diagnosis.”¹⁰⁰ As such, in addition to a shortage of qualified healthcare providersCredentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists., both proximity to services and transportation remain viable issues in the physical accessibility to healthcare services.¹⁰¹

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Communication Barriers

Communication issues are significant barriers to adequate access to healthcare because when patients with autism cannot communicate their healthcare needs, it is harder for them to receive the care and treatments they need. As is common with many components of ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹, the communicative abilities of individuals on the autism spectrum vary drastically, with some individuals communicating verbally with little noted impairment, while others are minimally verbal—speaking very few words at a time, or nonverbal—using nonverbal communication methods entirely. Although communicative abilities vary, an estimated 25–40% of individuals on the autism spectrum are either minimally verbal or nonverbal.^{102, 103, 104} One example of minimally verbal communication is when individuals do not speak in more than two-word phrases at a time¹⁰⁵ or only speak a few words by the age of 5,¹⁰⁶ although approximately 30% of individuals with autism remain minimally verbal after the age of 5.¹⁰⁷ For minimally verbal or nonverbal individuals with autism, some of the most utilized communication methods include communication boards, sign language, Picture Exchange Communication System (PECS), and Speech Generating Devices (SGDs).¹⁰⁸ These communication barriers remain complex due to their unique nature, with fluctuations based on the severity of ASD symptoms. Due to a variety of communication barriers, only 57% of surveyed patients with ASD reported that their providers understood what they were trying to communicate as compared to 86% of patients without ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹.¹⁰⁹ Similarly, more than half of surveyed patients in another study reported frequently being unable to communicate thoughts, wants, or needs.¹¹⁰ These difficulties act as a barrier to communication between the provider and the patient, thus inhibiting care.¹¹¹

Other communication challenges for autism patients, more evidently with fully verbal patients, arise from difficulty knowing how to describe symptoms or communicate discomfort.¹¹² For example, individuals with autism may struggle to relate to common adjectives in the medical field. Some examples of commonly used descriptions that people with autism struggle to use or relate to are sharp, dull, achy, crampy, tender, acute sudden-onset, long-term, on or off, etc. As for minimally verbal and non-verbal individuals on the autism spectrum, vocalizations such as grunts, groans, involuntary vocalizations, or even repeated shouting of a particular phrase (whether related to the healthcare visit or not) are common methods of communicating discomforts such as pain, or even positive emotions like happiness and excitement.¹¹³ However, these vocalizations can sound alike and, as a result, be easily mistaken for each other. Other studies identify behaviors such as grimacing, injuring one’s self, or furrowing one’s brow as further methods of expressing pain—behaviors equally subjective and difficult for providers, especially providers unfamiliar with the patient’s needs.¹¹⁴ When patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ are unable to effectively communicate their medical needs with healthcare providersCredentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists., their access to appropriate treatments and adequate healthcare suffers.

Finally, patients with autism also struggle to understand what their healthcare providersCredentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists. are communicating. More specifically, 75% of surveyed patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ reported they could “sometimes or usually” understand what their provider was communicating, as compared to 92% of patients without ASD.¹¹⁵ These communication barriers can detract significantly from a potentially beneficial healthcare interaction and further frustrates efforts to provide quality care for patients with ASD.

Lack of Formal Provider Training

Lack of formal provider training contributes to inadequate care for individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ because when providers do not have specialized, formal training for treating this population, access to personalized care and treatments for patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ suffers.¹¹⁶ For this brief, formal training for healthcare providersCredentialed providers with diagnostic and prescriptive authority delivering healthcare services to patients in a medical environment. Commonly referred to as ‘providers,’ this paper defines healthcare providers as nurse practitioners, physician assistants, general physicians, and specialists. is defined as ASD-specific education provided through higher education institutions such as nurse practitioner and physician assistant training and medical school residency.

Due to time constraints and competing specialties taught in formal residency, DBPA medical subspecialty of pediatrics that focuses on diagnosing and treating concerns related to growth and development in children.⁵ is not a clinical priority for many higher education institutions in comparison to the listed core specialties, leading to gaps in provider skills and confidence in treating individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹. Required core rotations in medical school range from a minimum of 4 weeks (in most cases) to 12 weeks, depending on the specialty.^{117, 118} By contrast, a DBP rotation was not mandated in medical school residency until 1997, when a one-month rotation was implemented.¹¹⁹ Even then, the governing body of this rotation asserts that the actual implementation and compliance rates of this mandate are “unknown.”¹²⁰ As such, DBP requirements often vary widely per institution and can depend on a provider’s specialty.¹²¹ As a result, the providers who received training in DBPA medical subspecialty of pediatrics that focuses on diagnosing and treating concerns related to growth and development in children.⁵ still report autism as 1 of the top 3 conditions they feel least comfortable treating.¹²² Other alumni remarked that DBP was not required per their institution’s requirements, and some reported that DBP was not available as an elective specialty rotation either.¹²³ This lack of formal ASD-specific training through the form of DBP training is significant because healthcare providers, regardless of specialty, are likely to encounter patients with ASD in their respective fields. Therefore, when ASD-specific training is not regulated or provided, it places both patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ as well as providers at a disadvantage because ASD-specific tools can promote successful visits with patients with ASD, regardless of the provider or clinic specialty.

As a result of this lack of training, providers across all healthcare-related departments (both specialty and non-specialty) have reported an inability to give adequate care for patients with autism, with providers citing a lack of formal training as a contributing factor to their inability to provide adequate care.^{124, 125} For example, beyond the field of pediatrics, 66.7% of family medicine providers reported not previously receiving any ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ education.¹²⁶ Furthermore, when questioned about treating patients with autism, only 13% of surveyed providers agreed that they had the tools and resources to accommodate ASD patients, leaving the vast majority of 87% of providers without the ability to provide quality care for the rest of the population.¹²⁷

In lieu of formal training, providers report learning how to treat individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ on their own, through personal connections, or by occasionally attending presentations.¹²⁸ In addition, an overwhelming majority of providers requested ASD-specific conferences, as well as checklists of resources for patients and training on overall effective strategies for providing care for patients with ASD.¹²⁹ This inconsistency and overall lack of training perpetuates gaps in providing quality care for this population.^{130 131} Therefore, due to the current discrepancies in formal provider training, the complex needs of patients with autism are not comprehensively supported by the US healthcare system.

The Environment of Healthcare Facilities

The environment of healthcare facilities in the United States leads to decreased access to healthcare for individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ because even if patients are able to access healthcare facilities and express their needs in some manner, sensory and environmental barriers within clinics themselves can prevent patients from feeling comfortable enough to stay in the waiting room and wait for their appointment or be able to retain information shared at the appointment. On a facility level, patients and family members of individuals with autism report that loud, bright, and otherwise overstimulating waiting rooms, untrained staff members, long wait times, and rushed visits all negatively impacted their healthcare experience.¹³² When asked about the waiting room experience, 51% of patients with autism reported it as a barrier, whereas only 8% of patients without ASD reported it as a barrier.¹³³

Additionally, while 71% of patients without ASD reported no sensory-related healthcare concerns, only 10% of patients with ASD reported the same.¹³⁴ Regarding sensory concerns related to waiting room environments, there were notable discrepancies in responses from patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ versus patients without ASD, with a significantly higher percentage of patients with ASD reporting sensory issues as a barrier to care as compared to patients without ASD.¹³⁵ Due to the various sensory experiences that can contribute to hesitancy in seeking healthcare, when appropriate accommodations are not made, patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ struggle to receive adequate healthcare specific to their needs.¹³⁶

However, in spite of the prevalence of environmental issues, only 14% of surveyed providers reported high confidence in identifying environmental accommodation needs for patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹, and 16% of surveyed providers reported high confidence in making identified accommodations.¹³⁷ Another study noted that 35% of both patients with ASD and caregivers of patients with ASD endorsed that sensory discomfort was a barrier to receiving care.¹³⁸ This lack of confidence among providers themselves and parents supporting children with autism contributes to the lack of adequate care among patients with autism, as sensory overload can prevent access to or decrease quality healthcare.

Processing sensory input can be a significant challenge for individuals with ASD, as it is estimated that between 75%–80% of children with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ (or more, depending on how sensory processing is defined) have significant symptoms of Sensory Processing Disorder (SPD), a condition that is known to commonly affect individuals with ASD and results in the over or under processing of sensory information.¹³⁹ For those who underprocess sensory information, SPD can prompt drives such as a desire to touch, taste, or feel certain textures to reduce anxiety and other strong emotions. Due to the unique challenges present in an individual with ASD and sensory issues, a heightened ability to experience sensations, such as smell, sight, and sound, and a diminished ability to filter sensory stimuli, oftentimes, sensory experiences the individuals without ASD may consider ‘normal,’ can be overwhelming for those with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ and in some cases can result in behavioral issues. This sensory overstimulation can manifest itself in self-injurious manners such as hitting, punching, or otherwise harming oneself, running away, verbally lashing out, or acting physically aggressive toward others.^{140, 141} These behaviors, especially in combination with communication barriers and a lack of adequate provider training, can quickly escalate into behaviors that are not compatible with an outpatient clinical setting and in some cases, can result in dismissal from care.¹⁴²

Negative Consequences

Delayed and Missed Diagnosis

Delayed Diagnoses

The first negative consequence of inadequate care for individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ is significant delays in diagnoses. When ASD diagnoses are delayed or missed overall, it significantly decreases access to ASD-support services such as intervention services and other supports that help improve the quality of life for individuals with ASD. Several studies have noted that parents of children with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ generally perceive that explanations of their child’s diagnosis were inadequate.¹⁴³ Another study reported that 51% of surveyed parents were unsatisfied overall with their child’s ASD diagnosis process.¹⁴⁴ Another barrier includes diagnostic clinic delays,¹⁴⁵ with some parents reporting a 6–9 month delay for an initial diagnostic assessment by a DBPA medical subspecialty of pediatrics that focuses on diagnosing and treating concerns related to growth and development in children.⁵.¹⁴⁶ As a result of these delays, many children are not diagnosed until an average of 4.4 years old, which one study reported is 2.2 years after initial ASD concerns were brought up to a provider by parents.¹⁴⁷ Some studies note diagnostic delays lasting into adolescence or even adulthood, when initial signs of ASD can be detected as early as 18 months, with some experts stating signs can begin to be noticed even earlier.¹⁴⁸ In addition to noted shortages of providers who specialize in diagnosing and treating ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ due to the COVID-19 pandemic, 58% of surveyed ASD assessment services reported a longer wait time than pre-pandemic times.¹⁴⁹ Delayed ASD diagnoses have been linked to a reduced quality of life for individuals with ASD due to a lack of self-understanding and a delay in ASD-related social and emotional resources.¹⁵⁰ These barriers in distance and assessment delays contribute to delayed diagnoses which can interfere with the timeline of treatment; recommended to begin in early childhood for maximum benefit.¹⁵¹

Missed Diagnoses

In addition to delayed diagnoses are diagnoses that are missed altogether due to a variety of factors within the assessment and diagnostic process.¹⁵² One study with data from 11 states in the US reported that 25% of observed children who had ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ character traits did not have an ASD diagnosis by age 8.¹⁵³ However, a significant gap in US-based research is data on estimated figures of individuals who never receive an ASD diagnosis in their lifetime. When these diagnoses are delayed or missed altogether, it significantly impacts an individual’s ability to receive early intervention ASD services, which have been proven to have substantial, long-term, positive effects on life skills and symptom management for individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹.¹⁵⁴

Worsened Health Outcomes

In this section, worsened health outcomes are measured via hospitalization rates, as admission criteria are reviewed by multiple providers prior to admission and can be a measurement that is more indicative of significant illness.

Photo by insung yoon on Unsplash

Although it has been established that individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ experience a higher rate of comorbiditiesHealth conditions that commonly co-occur with another health condition.² Several comorbidities often occur with autism, specifically including gastrointestinal issues, seizures, and sleep disorders.^{3, 4} than individuals without ASD,^{155, 156} their lack of access to adequate healthcare exacerbates comorbid conditions, and their physical health suffers. Interestingly, many of these comorbid conditions can typically be managed in an outpatient setting, but due to a lack of access to adequate healthcare (for example, trained providers, sensory-friendly environments, and so on), these conditions often worsen, resulting in increased rates of hospital admissions.¹⁵⁷ One study even suggests that commonly associated “co-occurring conditions” with ASD may be less related to actual comorbidity due to genetic links to ASD and more to do with access disparities and inadequate healthcare services for patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹, meaning, with improved access to adequate healthcare, some of these “co-occurring conditions” may decrease in prevalence.¹⁵⁸

Regardless of the actual origin of comorbid or co-occurring conditions with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹, it is well established that inpatient hospitalization rates are significantly higher among patients with ASD than their non-ASD counterparts.^{159, 160} When comparing these hospitalization rates, patients with ASD were 3.7 times more likely to be hospitalized than their non-ASD counterparts.¹⁶¹ Another study found that the percentage of non-mental health-related hospitalizations among youth with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ was 55.9%, whereas hospitalization rates for youth without ASD were 22.9%.¹⁶²

While there are various conditions that can lead to hospitalization, multiple studies confirm that a lack of adequate preventative care is a significant causal agent of these hospitalizations and is also a significant contributing factor in morbidity and premature mortality rates in individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹.¹⁶³

Societal Burden

When individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ are unable to receive adequate healthcare, it often results in increased societal spending. In a study that calculated the lifetime societal cost of care for individuals with ASD, it was estimated that between 1990–2020, care costs exceeded $7 trillion—which is the equivalent of approximately 2 years of total federal revenue for the United States.¹⁶⁴ If these cost-of-care trends continue, one source estimates that by 2029, the societal cost of caring for individuals with ASD will increase to $11.5 trillion.¹⁶⁵ If prevalence continues to increase at the past rate, the cost will grow to nearly $15 trillion.¹⁶⁶ This projected increase in spending may be a combination of increased future prevalence of ASD, inadequate care itself, and other factors. Specific healthcare-related costs included in this estimate are costs for inpatient and outpatient care, hospitalizations, emergency medicine, physician visits, and pharmacy costs.¹⁶⁷ However, significant gaps in access to care and quality of care continue to persist and will continue to exacerbate overall costs for society directly through healthcare costs, costs of informal care, accommodation costs, special education costs, and indirectly through productivity loss of caregivers of individuals with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ and respite services for individuals with ASD.¹⁶⁸

Best Practices

The Medical HOME Model of Healthcare

Impact

In the medical HOME model, HOME stands for "Healthy Outcomes Medical Excellence" and is a best practice model of healthcare delivery with a goal to provide care that is accessible, continuous over time,¹⁶⁹ comprehensive, family-centered, coordinated with parents and providers,¹⁷⁰ compassionate and culturally effective for its patients.¹⁷¹ One common application of this medical HOME model has been for patients with developmental disabilities and, more specifically, children and youth with special healthcare needs (CYSHCN).^{172, 173}

An example of a clinic that has adopted the medical HOME model of healthcare is the Neurobehavior HOME Program in Salt Lake City, Utah, which, utilizing practices of the medical HOME model, currently treats over 1,200 patients with developmental disabilities (including autism) throughout their lifespan.^{174, 175} What is unique about this clinic is that they provide medical care such as annual physical exams, well-child checks, preventive care, and primary care for a wide range of conditions for individuals with developmental disabilities (such as ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹) that often struggle to receive this care in other settings due to sensory sensitivities and lack of provider training.¹⁷⁶ However, to ensure that patients with ASD receive comprehensive care, the Neurobehavior HOME program also partners with an Autism Spectrum DisorderAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ clinic that focuses on diagnoses, early intervention services, family support, and therapy services.¹⁷⁷ The Neurobehavior Home Program also provides specific resources, such as a twenty-four-seven crisis hotline,¹⁷⁸ information on different types of therapy to help patients with ASD, national ASD organization information, disability-friendly fitness organizations, and toolkits to help families and providers navigate common social and medical ASD-related challenges.¹⁷⁹

Gaps

While the Medical HOME model has been associated with increased patient-provider satisfaction, improved quality of care and preventive care, and decreased incidence of chronic disease, only 25% of children with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ are patients in a medical HOME.¹⁸⁰ Additionally, within HOME programs that care for patients with disabilities, patients with ASD are less likely to receive care in a medical HOME compared to other CYSHCN,¹⁸¹ and when they do receive care, providers in general report feeling less comfortable caring for patients with ASD than other CYSHCN.¹⁸² Other gaps with this model are a lack of consistency in practice implementation, a lack of specialists to work in these settings, and contracts that restrict a patient’s ability to see a pediatrician or primary care provider outside of the medical HOME setting.

Increased Provider Training

Impact

Additional best practices in improving healthcare for patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ is increasing provider training¹⁸³ through increased exposure to patients with ASD in residency programs,¹⁸⁴ offering training for all medical staff levels on ASD¹⁸⁵ through HR platforms, and providing tips on best practice for ASD care on platforms such as “up-to-date,” a frequently referenced guide of current best practices for providers on a variety of conditions.^{186, 187} Several surveyed providers noted that compliance with these practices could increase by incentivizing providers and practices to accept patients with ASD¹⁸⁸ and by compensating providers for their additional time in planning, preparing, and coordinating with other providers regarding care for patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹.¹⁸⁹

One specific curriculum, known as the Autism Case Training curriculum (ACT), was developed by the CDC and the Maternal Child Health Bureau. The curriculum’s purpose is to educate medical providers to better understand, diagnose, and treat ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ through real-life scenarios. The training is composed of 7 modules (each approximately an hour in length), which discuss early warning signs of ASD, communication strategies, treatment options, proper diagnosis, and other topics.¹⁹⁰ The ACT also provides teaching tools, videos, questions and prompts, and relevant handouts. Although the training has not been enforced nationwide, several studies have examined the curriculum’s effectiveness. For instance, one study had approximately 190 medical students and pediatric residents across various institutions participate in one of the ACT modules.¹⁹¹ Participants reported an average 16.7% increase in knowledge of ASD and associated practices, and 94% of participants rated the experience as a “useful” or “very useful” addition to their medical training. In addition, 80% stated they would be interested in attending additional ASD training sessions.¹⁹² Finally, according to another study, more than 75% of surveyed primary care providers of all experience levels endorsed that using a social story, having additional information about the patient prior to the appointment, and receiving a list of patient-specific needs was “moderately to extremely important” in providing positive healthcare experiences for adult patients with ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹.¹⁹³ This data illustrates the significance of providing additional training for providers so they can take this training into their practices and improve quality care for patients with ASD in their care.¹⁹⁴

Gaps

One of the largest gaps in increasing provider training on ASDAutism spectrum disorder is a complex neurodevelopmental disorder in which an individual experiences challenges with social interactions, repetitive or atypical behaviors, and restricted interests and can also present communication challenges and difficulty interpreting and regulating emotions and physical movements.¹ is overall provider incentive and compliance with receiving additional training. As the ACT curriculum demonstrates, providers must opt-in to additional training on their own, or a medical institution must agree to utilize these ASD-specific modules. As such, it is unclear how sustainable these trainings can become unless rigorously assimilated into existing medical training. Finally, while the ACT curriculum is free, medical institutions may need to pay additional costs for effective, standardized training for interested residents. These and other questions continue to limit the possibility of increased provider training in the US.

Preferred Citation: Sutton-Clark, Gabby. “Inadequate Healthcare Services Among Individuals with Autism in the United States.” Ballard Brief. November 2022. www.ballardbrief.byu.edu.

Viewpoints published by Ballard Brief are not necessarily endorsed by BYU or The Church of Jesus Christ of Latter-day Saints