As Number of Adults With Autism Rise, Need For Better Services Apparent

Abstract

Back to table of contents Previous article Next article Clinical & ResearchFull AccessAs Number of Adults With Autism Rise, Need For Better Services ApparentNick ZagorskiNick ZagorskiSearch for more papers by this authorPublished Online:25 Feb 2021https://doi.org/10.1176/appi.pn.2021.2.12AbstractWhile there is a growing recognition of the health risks adults with autism face, much remains unknown about how best to effectively care for this population.iStock/scyther5Recent data from the Centers for Disease Control and Prevention (CDC) suggest that the prevalence of autism spectrum disorder (ASD) among U.S. children is on the rise. An estimated 1 in 54 8-year-olds was identified as having ASD in 2016, up from 1 in 150 when the CDC began national tracking in 2000.While early recognition of ASD in children and wraparound services such as speech and behavioral therapy have helped many, most people with ASD will continue to experience challenges well into adulthood.“This is a problem at a societal level, since these new adults are transitioning to a world that wasn’t set up for them,” said Brittany Hand, Ph.D., an assistant professor of health and rehabilitation science at the Ohio State University and occupational therapist.How big is the problem? According to data released by the CDC in 2020, autism effects just over 2%—or about 5.5 million—of adults aged 18 to 84 nationwide.This estimate, based on historic ASD prevalence rates in children and state-by-state mortality data, is likely an underestimate, explained psychiatrist Robert Wisner-Carlson, M.D., chief of the Autism and Neurodevelopmental Outpatient Program at Sheppard Pratt in Towson, M.D.Though child psychiatrist Leo Kanner, M.D., first described autism in 1943, the diagnosis was likely missed in children for several decades. “Many children with ASD who grew up in the 1940s, 50s, or 60s probably never got evaluated,” he said.This hidden population could present challenges, added Hand, who works with people with ASD. “I’m not sure if our health system is prepared to meet the needs of this vulnerable population as they age,” she said.Much Unknown About ASD in AdultsExperts interviewed by Psychiatric News noted that there are few data to help guide clinical and supportive care of adults with autism. Historically, only 1% to 2% of federal funding for ASD research has supported the study of adults.Wisner-Carlson believes multiple factors over the years created this widening knowledge gap, but the seeds can be traced to Kanner’s pioneering work. “This disorder was first identified by a child psychiatrist, and that set the path for future research to be child-centric,” he said. As still holds true today, researchers first diagnosing ASD in children lacked the time and resources to follow the patients over long periods of time, so they were not studied into adulthood.Additionally, adults with ASD were not likely recognized by physicians in those early years, noted Elizabeth Wise, M.D., a geriatric psychiatrist at the Johns Hopkins Adult Autism and Developmental Disorders Center. High-functioning adults received no diagnoses, while those with more severe ASD were typically misdiagnosed with schizophrenia.There is increasing awareness today of the impact that ASD has on adults, Wise said. Patients at her center have been referred by psychiatrists, neurologists, and primary care physicians. “Even patients come to us themselves sometimes, typically after they have a child who gets diagnosed and they reflect on their own condition.”As is the case with children with the disorder, adults with ASD often have difficulties communicating and recognizing socially unacceptable behaviors, and they can be prone to outbursts. Adults with ASD typically have less social anxiety than children, as they have slowly adapted to their surroundings with age.“A definitive ASD diagnosis can only be made if you know the symptoms started in early childhood,” Wisner-Carlson said. For older adults without parents or siblings who can be informants, it may not be possible to confirm symptom onset.Despite Need, Few Services AvailableAs with research funding, policy decisions funding ASD services have focused predominantly on children. Laws such as the 1975 Individuals with Disabilities Education Act—which mandates special education and wraparound services to children with ASD and other intellectual disabilities—expire at age 21.“For many children with disabilities, that’s enough time to give them a chance at success in adulthood,” said Christopher Manente, Ph.D., the executive director of Rutgers Center for Adult Autism Services in New Jersey. “But the nature of autism makes it different from every other disability and points to why we need more support.”Manente told Psychiatric News that common ASD behaviors, such as difficulties communicating and understanding social norms, hinder people’s ability to integrate into society.“Being able to connect with other humans lets them know you have value to add,” Manente explained. “But many individuals with ASD have an inherent inability to do that.”Given these social difficulties—and the limited availability of ASD services for adults, such as skills or job training—many adults with ASD are unemployed, living at home, and socially isolated.“A common thread of people with autism is that they do not handle transitions well,” Wisner-Carlson said. Even small transitions—such as a schedule change in a daily bus route—can affect the well-being of people with ASD, who are comfortable with routines. Major life transitions, such as entering a nursing home and/or the death of a caregiver, can completely derail a person with ASD emotionally.Hand has combed data from hospital records and Medicare claims to tease out some details about the health challenges adults with ASD face as they grow older. Her analyses have shown that older adults with ASD are more likely than the general Medicare population to have hypertension, diabetes, mood disorders, osteoporosis, arthritis, heart problems, and cognitive impairment.The ASD literature on children indicates that they often have comorbid attention-deficit/hyperactivity disorder, personality disorders, epilepsy, and/or gastrointestinal issues. Hand’s research has found that these problems are also prevalent among older adults with ASD. The risks of these various comorbidities may be even higher in adults who are minorities and of lower socioeconomic status, she noted.When you factor in the risks for mood problems, impulsivity problems, and social difficulties, it is no surprise that self-harm and suicide are more common in adults with ASD compared with the general population, Wisner-Carlson continued, though this connection is underappreciated. One 2017 study of 42 adults with ASD found that 50% had injured themselves, while Hand’s analysis of Medicare recipients with ASD found an 11-fold increased risk of self-harm or suicidal ideation compared with Medicare enrollees without ASD.Factors to Consider When Working With Adults With ASDEven though adults with ASD are at greater risk of health problems than those without ASD, they often have less access to specialist care and are more likely to seek care in the emergency room, Hand said. She noted that this disparity may be driven in part by health professionals who lack training in how to treat adults with ASD and may feel uncomfortable doing so, she said.This discomfort exists even among some mental health professionals, Wisner-Carlson noted. “ASD is more common than schizophrenia, which [adult] psychiatrists train for,” he said. “But we draw a lot of our clinic patients from psychiatric hospitals in the region, because they tell us they don’t have the tools to care for them.”That’s why education and training for medical residents, nurses, and social workers is an important component of the services offered at places like Sheppard Pratt, Johns Hopkins, Rutgers, and Ohio State (which recently established a Center for Autism Services and Transition to provide tailored primary care for young adults with ASD).“We need to professionalize adult autism services in the same manner they are for children,” Manente said. “We know that adults with ASD need a lot of support at any age.”In the short term, Manente implored psychiatrists to be confident when treating patients with ASD.“Many psychiatrists may get their first experience of adult ASD in the emergency room with an agitated patient, but such cases reflect a small proportion of this community,” Wise added.Wise said psychiatrists should be mindful that a common symptom of ASD is sensory sensitivity, so they should make sure to ask patients about light and sound levels and be cognizant about physical procedures, including taking blood pressure.“The presence of a mood disorder can be difficult to tease out, since many people with ASD, including high-functioning individuals, cannot tell you how they feel emotionally,” noted Wisner-Carlson, who has extensive experience managing a comprehensive outpatient program for over 600 adults with ASD and other neurodevelopmental disorders.“Communication can be difficult, but most talk-based therapies can be effective for people with autism,” Manente added. “An ASD diagnosis should not be an exclusion for behavioral therapy.” ■“National and State Estimates of Adults With Autism Spectrum Disorder” is posted here.“Prevalence of Physical and Mental Health Conditions in Medicare-Enrolled, Autistic Older Adults” is posted here.“Untended Wounds: Non-Suicidal Self-Injury in Adults With Autism Spectrum Disorder” is posted here. 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