McNair Summer 2024 Research
Wayne State University
July 1, 2024
Problem Statement
Autism Spectrum Disorder (ASD) affects one in thirty-six children in the United States (CDC, 2024). Depending on when the child is diagnosed with ASD, at one point or another, they reach adulthood. What happens to individuals with Autism transitioning from childhood to adulthood? The term "cliff drop" phenomenon refers to the difficulties individuals with ASD experience in finding resources and services when entering the adult stage of life. This phenomenon will be investigated through a literature review that focuses on ways to mitigate these disparities. In particular, the aim is to analyze these disparities in service provision for
individuals with ASD based on race, class, and geography. It explores the impact, if any, on these individuals with ASD as they transition into adult services such as healthcare and social needs.
The lack of healthcare access for autism diagnoses is a significant issue. Resources and services for autism cannot be reached until the individual receives a diagnosis from a medical professional. A late diagnosis will exclude the individual from necessary developmental
resources and services, including future healthcare referrals, education curriculum, and societal interactions/ communication skills. Moreover, medical insurance coverage for autism services is complex. Families often resort to paying for private medical insurance policies to cover the needs of their children with autism. Still, each private insurance has differences in coverage based on patient age, number of visits, and annual spending caps. This literature review will highlight these gaps and find future solutions to rectify them.
Research Questions
This literature review will answer the following questions: What is the nature of the "cliff drop" phenomenon, and how does it impact individuals with ASD during the transition to adulthood? How do disparities in autism resources and services, considering race, socioeconomic status, and location, affect the quality of healthcare and support available to individuals with ASD during their transition to adulthood? What are potential strategies to mitigate the impact of the "cliff drop" phenomenon on individuals with ASD during the transition to adulthood?
Methodology
This literature review compiles findings from various studies and reports to understand the “cliff drop” phenomenon's nature, its challenges, and potential strategies to mitigate its impact. A comprehensive search used multiple academic databases and online resources, including PubMed, Google Scholar, and the Wayne State University library access portals.
“Autism services transition,” “cliff drop in autism,” “ASD adulthood
transition,” “autism and healthcare quality,” “racial disparities in autism services.” and “insurance coverage for autism,”
The inclusion criteria are peer-reviewed articles, books, and reports published in the last twenty years. Studies focusing on the transition from childhood to adulthood for individuals with ASD and research addressing disparities in autism services based on race, socioeconomic status,
and location were also included. The exclusion criteria are studies not published in English, not peer-reviewed, not including empirical data, or focusing solely on early childhood without addressing the transition to adulthood.
What is Autism?
Autism, also known as Autism Spectrum Disorder (ASD), is a complex developmental condition that affects individuals in different ways. Difficulties in social interaction, communication, and repetitive behaviors characterize it. The term "spectrum" refers to the wide range of symptoms, skills, and levels of disability that individuals with ASD can experience. This means that the condition can differ from person to person, ranging from mild to severe. “Autism spectrum disorder (ASD) is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Although autism can be diagnosed at any age, it is described as ‘development disorder’ because symptoms generally appear in the first 2 years of life.” (NIH, 2024). Some individuals with ASD may have exceptional abilities in
certain areas, such as music, art, or mathematics, but also experience challenges in daily activities. The vast spectrum of ASD emphasizes the uniqueness of each individual and the need for personalized resources, services, support, and interventions.
Symptoms
The vast spectrum of autism varies as there is a scale where individuals are measured based on the severity of their symptoms. “Each child with autism spectrum disorder is likely to have a unique pattern of behavior and level of severity- from low functioning to high functioning.” (Mayo Clinic, 2018). Children with ASD express a lack of social interactions,
communication difficulties, repetitive behaviors and routines, sensory sensitivities, and cognitive abilities. Cognitive Abilities is wide variation in cognitive functioning, with some individuals, based on the severity of their diagnosis, having intellectual disabilities and others exhibiting
average or above-average intelligence Difficulties with executive functioning, such as planning, organizing, and multitasking Strengths in specific areas include memory, attention to detail, and
specific academic skills.
Lack of Social Interaction:
Difficulty in understanding social cues and body language
Limited interest in forming friendships or engaging in typical social activities
Challenges in expressing or sharing interests or achievements with others.
Communication Difficulties:
Delayed exceptional development or a complete lack of spoken language
Difficulty in maintaining conversations with peers
Repetitive use of language/essential, safe words
Sensory Sensitivities:
Over or under-reaction to sensory stimuli, such as sounds, lights, textures, or smells
Distress or discomfort in response to specific sensory experiences
Unusual sensory interests include sniffing objects or being utterly focused on moving objects
Diagnosis
The diagnosis for individuals who demonstrate ASD symptoms varies depending on the access to healthcare and the funds necessary for the testing. The lack of healthcare access to autism diagnosis will critically impact the lives of the individual with ASD, their families, and
the overall access to future healthcare, education, and societal interactions. Within the United States, each state has its healthcare insurance mandates for ASD tests. As of June 2017, forty-six
states and the District of Columbia had issued private insurance coverage mandates for ASD (ASHA, 2018). The insurance coverage for autism services within the private insurance mandates is challenging and complex for individuals to utilize—differences in coverage based on patient age, number of visits, and annual spending caps. For example, Applied Behavior Analysis (ABA) therapy is often covered, but speech-language services may be denied. However, with Medicaid mandates, there are early and periodic screening, diagnostic, and treatment (EPSDT), which allow providers to screen children at a very young age, usually around 16 to 24 months, which includes Speech Language in treatment plans for individuals with ASD.
The diagnosis assessment comprises comprehensive autism evaluations that often require a team of professionals, including psychologists, speech therapists, and occupational therapists.
Some of these assessments can be costly depending on the individual's insurance plan, as many need to cover some components, leaving the parents and or caregivers to pay for additional testing or assessments out of pocket. “Data on the costs of these intervention are sparse, but the
therapies are generally considered to be quite expensive. Total costs of treatment combined with opportunity costs (e.g. for lost work by a parent or caretaker) have ranged from $17,000 per year in the US” (Acton et al., 2019). Early diagnosis is critical for accessing early intervention services vital for their development. The prolonged diagnosis process of securing all the necessary evaluations and consultations adds to the overall time and financial burden on families.
Racial Disparities in Autism Research
Disparities in access for families from lower socioeconomic backgrounds and or those with limited health literacy experience increase difficulty in navigating the insurance system, leading to inequalities in access to early diagnosis and services. One finding of racial disparities in autism research is that African American children are diagnosed with Autism later than white children despite similar symptoms reported. Thus, racial representation is essential in research
and practice, as it impacts access and quality of the transition services. The International Society for Autism Research (INSAR) has made concerted efforts to improve diversity. Still, the society had provided success metrics, and the annual conferences did not have one African American keynote speaker. Supporting students of color allows trained black individuals to connect to their parents. “Importance for racial representation in research and practice; when you’re sitting in a
room with [people] who don’t look like you, you feel that [they] can’t sympathize with I’m going through.” (Shaia et al., 2020). African American parents and white parents report their child’s symptoms at the same time, yet African American children are diagnosed much older than their white counterparts. The racial disparities in ASD research involve multiple different variables in the action of the blockades and limitations of minorities in the United States.
The ASD “cliff drop” phenomenon is seen above. The diagram was designed after reviewing all the peer-reviewed articles and charting the years autism services are usually offered. “Following the last day of high school, the legal mandate for help suddenly ends. There is no federal requirement for providing supportive services in adulthood. Many services for adults with disabilities use different eligibility rules than in special education.” (Roux, 2018). The age range of the services resembles a mountain peak. Researching the “cliff drop” phenomenon is not easily understandable as the contributing factors are dramatically different for each individual. Early intervention for toddlers with autism and individuals with newly developing behaviors depends on the severity of the symptoms of ASD. The numerous programs and therapies the children participate in from a very young age till eighteen years old, depending on their insurance coverage, and going to school until the age of twenty-six years old. (Autism Speaks, 2022). When children reach adulthood, minimal programs are available, and in some US regions, they have minimal ability.
Past studies conclude that maternal ethnicity, insurance status, and education level impact service utilization. There is a need for culturally and linguistically accessible interventions. The recommendation is to ensure equitable access to intervention services across different socio-demographic groups. “Research has shown that a lack of perceived social support among mothers of children with Autism is the most significant indicator of the development of mental health problems and has a negative impact on parental stress and on family socialization.” (Papadopoulos, 2021). Mothers of children with ASD face challenges within their homes in
taking care of their children and balancing their family dynamics, while the challenges increase if they have other children to take care of. Quality of Life (QoL) was assessed to see the relationships and connections among the children with Autism, their siblings, and their parents. Non-autistic siblings suffer adverse effects from having siblings with ASD as they are more aggressive and prone to conflict, which increases anxiety and stress. (Quatrosi et al., 2023).
The “Cliff” for Adults with ASD
When parents of young children are trying to look for a cure, depending on the spectrum level, they will switch to adult arrangements. Daily living skills (DLS) after proficiencies in money management, self-care, shopping, and obtaining appropriate health care. The DLS-AE, or the Daily living skills age equivalent, is found to decrease after students exist in school in all groups with and without ASD. “Thus, we can conclude that the loss of school-based services is
associated with the loss of DLS, which is directly related to postsecondary education, whereas Autism symptoms severity predicts gainful employment.” (Hendren, 2021). The cliff phenomenon of individuals with autism happens as the children are transitioning out of their pediatric programs and are entering an unequipped healthcare system as adults with ASD. The adult healthcare system, compared to the pediatric healthcare system, is fragmented and often
lacks familiarity, sufficient knowledge, and adequate funding to meet the needs of autism. Potential solutions include making primary care settings more accessible to individuals with ASD by training and incentivizing providers to serve this population, enhancing education on effectively engaging with individuals with ASD and their caregivers, and introducing innovative practices within the office environment.
The individual starts losing their primary caregiver and parent, who is their health and social advocate. If and when an adult with ASD loses their parents, it comes with many challenges as parents of adults with ASD play a crucial role in their child’s life of care and
support. The loss of a parent can lead to several emotional and social issues. People with ASD may not react to loss or express grief in real-time as they may have a delayed reaction that could appear weeks or months later. (Harvard, 2023). Feelings and emotions are delayed, but the reality of real-life advocacy for healthcare access and social support for the Adult with ASD is an ongoing battle. When they lose their primary advocate, the challenges increase. “Multiple studies have indicated that a substantial percentage of adults on the spectrum either face long-term unemployment or are engaged in sheltered or voluntary employment... (Adults with severe ASD) may not be able to advocate effectively for themselves due to a variety of reasons,” (Autism Enabling Masterplan, 2021). The adulthood changes that individuals with ASD face can not be prevented. However, it’s our societal responsibility to be able to assist them throughout these changes. Considering that adults with ASD will react differently every individual will need their personalized plan of action.
Discussion
During the transition from childhood to adulthood, individuals with Autism Spectrum Disorder (ASD) experience the "cliff drop" phenomenon. This refers to their difficulties accessing healthcare, education, and societal interactions. Disparities in autism services related to race, socioeconomic status, and location further impact the quality of support available to individuals with ASD, making it harder for them to access the resources and services they need. For example, in the State of Michigan, once a young adult with ASD graduates from their pediatric dentistry office, there is only one vital Adult Special clinic in the entire State of Michigan. Adults with ASD are unable to receive certain types of care such as cavity filling, root
canals, deep cleaning, etc. The capacity of this medical service offered at the University of Michigan is beneficial in many aspects. However, being the only location limits access to necessary oral health for many patients due to the driving access, waiting list, and insurance coverage.
Ensuring people with autism spectrum disorder (ASD) receive equitable support, it is critical to address the differences they encounter as adults. One significant effect of the "cliff drop" effect is felt by people with ASD, their families, and the larger community. This could entail developing therapies that are specifically designed to meet the requirements of people with ASD, resolving the challenges associated with insurance coverage for autistic services, and changing policies to increase access to healthcare. Awareness needs to bring about a policy change, for this issue will not happen overnight as we are dealing with multiple covariables in the “cliff drop” phenomenon. “The new legislation also seeks to address the aging population of
autistic adults, primarily by inserting the term ‘gerontology’ among a list of NIH-funded fields of autism research. There are an estimated 5.4 million autistic adults in the U.S., but the specific concerns of this sector are still poorly understood, Frazier says.” (Zamzow, 2024). The U.S. House passed the Autism Care Act in September 2024, the $2 billion bill funding over the next five years. Addressing these concerns will be moderated within this bill, and the results will be pending within the next five years.
Conclusion
The “cliff drop” phenomenon results in a significant decline in support services as individuals with ASD transition from childhood to adulthood. Addressing the disparities in autism services, such as those related to race, socioeconomic status, and location, which impact the quality of healthcare and support available to individuals with ASD during their transition period. These disparities need to be addressed to ensure that individuals with ASD receive the same level of care regardless of their background or location. This may involve increasing funding for ASD services, developing more culturally sensitive programs and services, and increasing access to resources. The “cliff drop” phenomenon will not be changed overnight, and
the action plan for this issue needs to reflect every aspect of the problem, major and minor.
The call to action is to further the research of ASD in the United States on a state and federal level and compare the data from the USA to that of other first-world countries. Once we have the vital research needed, we can call for policy changes within the healthcare system, from the insurance world to the patient-provider relationship. When personnel with ASD are in pediatric care, they have a parent and or guardian who is advocating for them every step of the way. However, as they transition into adulthood and medical care, they may lose that advocacy for many reasons, and this change is not something they have prepped for. Not only is the change for the adults with ASD, but the medical providers tend to lack training on how to treat and listen to individuals with special needs. A short-term to the “cliff-drop” phenomenon is a band-aid on the life of individuals with ASD who never lived in peace within their potential but had to mold their personalities to fit the societal standards and, within that, have lost their actual needs and wants.
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