"Don't Promise Something You can't Deliver:" Caregivers' Advice for Improving Services to Adolescents and Young Adults with Autism.

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Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day-to-day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship-building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood.

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  • Intellectual and Developmental Disabilities
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  • Cite Count Icon 44
  • 10.1186/s12913-019-4432-3
Service use, unmet needs, and barriers to services among adolescents and young adults with autism spectrum disorder in Poland
  • Aug 20, 2019
  • BMC Health Services Research
  • Mateusz Płatos + 1 more

BackgroundDespite a growing number of adolescents and adults diagnosed with autism spectrum disorder (ASD), little is known about service needs and barriers to services in this population. Existing research shows that youth with ASD are more underserved as they approach final years of their high school education and that adequate services for individuals with ASD after transition to adulthood are even scarcer. However, few studies have directly compared differences in service availability between adolescents and adults with ASD, and even fewer studies are published on service use outside Anglo-Saxon countries. The purpose of the present study was to examine service access, perceived barriers, and unmet needs, as reported by parents of adolescents and young adults with ASD in Poland.MethodsThe study used a subsample of parents of young people with ASD (aged 12–38 years; N = 311) from the Polish Autism Survey – a survey covering different areas of functioning of people with ASD in Poland, based on a convenience sample. Responding parents were recruited via different service providers, social media, and press, and completed a survey using a web platform or a paper-and-pencil questionnaire.ResultsAs expected, adults used services less often than adolescents, with 80.1% of adolescents and 61.1% of adults with ASD using services in the previous 12 months. Mental health services were among the most used and the most needed services, followed by educational services, while needs for sensory/motor services remained largely unmet. Young people with a coexisting intellectual disability used more services than those without it. Non-governmental organizations, private clinics, and schools were the most common service providers. Parents indicated that most of young people with ASD had unmet service needs for services (93.5%) and faced barriers to access them (82.7%). Low-income families and those living outside large cities were at the highest risk of facing barriers to service access.ConclusionsThe results confirm still a thin body of evidence from different countries suggesting that adolescents and adults with ASD were both largely underserved populations. Policy-makers should address economic, regional, and age-related inequities in access to services for individuals with ASD.

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  • Cite Count Icon 1313
  • 10.15585/mmwr.ss7011a1
Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018.
  • Dec 3, 2021
  • MMWR. Surveillance Summaries
  • Matthew J Maenner + 37 more

Problem/ConditionAutism spectrum disorder (ASD).Period Covered2018.Description of SystemThe Autism and Developmental Disabilities Monitoring (ADDM) Network conducts active surveillance of ASD. This report focuses on the prevalence and characteristics of ASD among children aged 8 years in 2018 whose parents or guardians lived in 11 ADDM Network sites in the United States (Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin). To ascertain ASD among children aged 8 years, ADDM Network staff review and abstract developmental evaluations and records from community medical and educational service providers. In 2018, children met the case definition if their records documented 1) an ASD diagnostic statement in an evaluation (diagnosis), 2) a special education classification of ASD (eligibility), or 3) an ASD International Classification of Diseases (ICD) code.ResultsFor 2018, across all 11 ADDM sites, ASD prevalence per 1,000 children aged 8 years ranged from 16.5 in Missouri to 38.9 in California. The overall ASD prevalence was 23.0 per 1,000 (one in 44) children aged 8 years, and ASD was 4.2 times as prevalent among boys as among girls. Overall ASD prevalence was similar across racial and ethnic groups, except American Indian/Alaska Native children had higher ASD prevalence than non-Hispanic White (White) children (29.0 versus 21.2 per 1,000 children aged 8 years). At multiple sites, Hispanic children had lower ASD prevalence than White children (Arizona, Arkansas, Georgia, and Utah), and non-Hispanic Black (Black) children (Georgia and Minnesota). The associations between ASD prevalence and neighborhood-level median household income varied by site. Among the 5,058 children who met the ASD case definition, 75.8% had a diagnostic statement of ASD in an evaluation, 18.8% had an ASD special education classification or eligibility and no ASD diagnostic statement, and 5.4% had an ASD ICD code only. ASD prevalence per 1,000 children aged 8 years that was based exclusively on documented ASD diagnostic statements was 17.4 overall (range: 11.2 in Maryland to 29.9 in California). The median age of earliest known ASD diagnosis ranged from 36 months in California to 63 months in Minnesota.Among the 3,007 children with ASD and data on cognitive ability, 35.2% were classified as having an intelligence quotient (IQ) score ≤70. The percentages of children with ASD with IQ scores ≤70 were 49.8%, 33.1%, and 29.7% among Black, Hispanic, and White children, respectively. Overall, children with ASD and IQ scores ≤70 had earlier median ages of ASD diagnosis than children with ASD and IQ scores >70 (44 versus 53 months).InterpretationIn 2018, one in 44 children aged 8 years was estimated to have ASD, and prevalence and median age of identification varied widely across sites. Whereas overall ASD prevalence was similar by race and ethnicity, at certain sites Hispanic children were less likely to be identified as having ASD than White or Black children. The higher proportion of Black children compared with White and Hispanic children classified as having intellectual disability was consistent with previous findings.Public Health ActionThe variability in ASD prevalence and community ASD identification practices among children with different racial, ethnic, and geographical characteristics highlights the importance of research into the causes of that variability and strategies to provide equitable access to developmental evaluations and services. These findings also underscore the need for enhanced infrastructure for diagnostic, treatment, and support services to meet the needs of all children.

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Self-determination in young adults with autism spectrum disorder
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This study examined rates of and contributing factors to self-determination among young adults with autism spectrum disorder. Caregivers of young adults with autism spectrum disorder, 16-25 years, from five Autism Treatment Network sites completed surveys about their young adults' transition experiences including the American Institutes for Research Self-Determination measure. Data were analyzed using univariate and multivariate analysis. Caregivers (n = 479) reported their young adults with autism spectrum disorder as having moderate overall self-determination (x = 38; standard deviation = 9.04) with low capacity (x = 15.3; standard deviation = 5.67) and high opportunities at home (x = 23.1; standard deviation = 4.59). Young adults with autism spectrum disorder with intellectual disability or severe autism spectrum disorder symptomology experience significant disparities in overall self-determination compared to those without intellectual disability and less frequent symptom expression and severity. Barring severity indicators, there were few significant predictors of self-determination. Findings show a breakdown in self-determination skill-building. Young adults with autism spectrum disorder with intellectual disability or severe symptomology experienced significant disparities in self-determination. These findings show that current promotion of self-determination is not meeting the needs of young adults with autism spectrum disorder. Future interventions must identify what supports young adults with autism spectrum disorder need to capitalize on these opportunities to be independent and exert autonomy in their daily lives.

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As Number of Adults With Autism Rise, Need For Better Services Apparent
  • Mar 1, 2021
  • Psychiatric News
  • Nick Zagorski

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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Age group differences in executive network functional connectivity and relationships with social behavior in men with autism spectrum disorder
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  • 10.1353/nib.2012.a494850
Parenting Adults with ASD: Lessons for Researchers and Clinicians
  • Dec 1, 2012
  • Narrative Inquiry in Bioethics
  • Cassandra R Newsom + 3 more

Parenting Adults with ASD: Lessons for Researchers and Clinicians Cassandra R. Newsom, Amy S. Weitlauf, Cora M. Taylor, and Zachary E. Warren Recent reviews of treatments for individuals with autism spectrum disorders (ASD) reveal how little we still know about how to help adolescents with ASD and their families successfully transition into adulthood (Shattuck et al., 2012b; Taylor et al., 2012a). Shattuck and colleagues found that services in the United States for adults with ASD were marked by high unemployment rates, a reliance on families to provide care across the lifespan, high turnover rates in front-line service providers, insufficient transition planning for high school students, and generally insufficient services to meet current needs. In a recent Agency for Healthcare Research and Quality (AHRQ) Comparative Effectiveness Review, the authors similarly found that there is very little evidence available to pinpoint specific intervention approaches for adolescents and young adults with ASD due to a lack of good quality studies. This was especially true for evidence-based approaches to support the transition of youth with ASD to adulthood (Taylor et al., 2012a). For the last decade, with dramatic increases in both ASD awareness and estimates of ASD prevalence, our field has understandably focused intensely on improving early detection and treatment of ASD. Our diagnostic tools and understanding of ASD presentation in very young children has improved tremendously. Different from many of the young adults in these stories, who were often diagnosed in their early teens, we now aim to identify children well before their third birthdays. Research has consistently shown that early and intense ASD-specific intervention can dramatically enhance outcomes for children with ASD. As such, there has been heavy investment in attempting to take full advantage of this early window of neuro-plasticity. However, as these stories illustrate, these children grow up. Their needs change, and our systems are often poorly equipped to help them live fulfilling lives, capitalize on their talents, and obtain independence and equal access, while still providing a safe, supportive environment. Without readily accessible and understandable coordinated systems of care, parents are forced to adopt the multiple roles of case manager, teacher, therapist, community educator, advocate, job coach, housing specialist, financial planner, and often, lifelong caregiver. These stories eloquently illustrate those struggles and successes. Grief and Joy: Opposite Sides of the Same Parenting Coin The idea of grieving a diagnosis is controversial. Many of the writers seemed to feel conflicted about their grief responses and the validity of their feelings. Research shows that many families view the diagnostic process as extremely stressful (Siklos & [End Page 199] Kerns, 2005; Heiman, 2002). Feelings of sadness, anxiety, and depression are common at the point of diagnosis and may reemerge as milestones pass unmet. Families must modify the futures they imagined for their children and begin to envision new goals and dreams. Anonymous Three described this process when she wrote: Most children grow up, go to school, get jobs, move out of their parents’ home, etc. My husband and I have had to seriously consider how much of these are even possible for a young man with autism, even one who has a good number of functional life skills. Tasks of adolescence and adulthood such as starting high school, driving a car, and moving out of the house may be delayed and hard won if met. Raising a child with ASD appears to have particular challenges. Throughout this process, families begin to redefine what “success” means. Rather than ascribing to societal standards, they find joy in personal milestones. McDonald described the triumph of teaching his nephew to shake women’s hands instead of touching their hair, an important safety goal that took three months to accomplish. Each family thereby creates its own path. People outside of the family often do not understand the complicated interplay of love and obligation as well as the frustration and fulfillment that families experience. Just like any family, the parents of children with ASD describe many joys in addition to their struggles. They see their children’s strengths in a world that too often focuses on their weaknesses. Gifted with the everyday experience of their child’s development, they see past the necessity of a...

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District Assemblies and Provision of Social Services in Ghana. Interrogating Educational and Health Care Infrastructure and Services in Bekwai Municipality
  • Apr 12, 2022
  • African Journal of Social Sciences and Humanities Research
  • Benjamin Boateng

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  • Cite Count Icon 15
  • 10.1002/aur.3085
Large increase in ASD prevalence in Israel between 2017 and 2021.
  • Jan 9, 2024
  • Autism Research
  • Ilan Dinstein + 8 more

Accurate estimation of annual changes in autism spectrum disorders (ASD) prevalence is critical for planning the expansion of diagnostic, education, and intervention services at an adequate rate. Previous studies from Israel have reported that ASD prevalence among 8-year-old children has increased from estimates of 0.3% in 2008 to 0.65% in 2015 and 1.3% in 2018. Here, we analyzed data acquired from the National Insurance Institute of Israeli (NII), a governmental organization that approves and monitors all ASD children who receive welfare services in Israel, and Clalit Health Services (CHS), the largest Health Maintenance Organization in Israel that provides health services to ~52% of the population. Data from both sources included annual data files from 2017 to 2021 containing the number of ASD cases per year of birth for 1-17-year-old children. This allowed us to estimate annual ASD prevalence among 3.5 million children born between 2000 and 2020 in Israel. Both data sources revealed a nearly two-fold increase in ASD prevalence among 1-17-year-old children from 2017 to 2021. Estimated prevalence rates differed across age groups with 2-3-year-old (day-care) children increasing from 0.27% to 1.19% (>4 fold change), 4-6-year-old (pre-school) children increasing from 0.8% to 1.83%, and 8-year-old children increasing from 0.82% to 1.56% in NII data. These results demonstrate that autism prevalence continues to increase in Israel with a shift towards diagnosis at earlier ages. These findings highlight the challenge facing health and education service providers in meeting the needs of a rapidly growing autism population.

  • Abstract
  • Cite Count Icon 1
  • 10.1192/j.eurpsy.2023.939
Understanding socio-labor inclusion among young adults with autism spectrum and mental disorders: preliminary findings
  • Mar 1, 2023
  • European Psychiatry
  • M S Burrone + 7 more

IntroductionPrevious studies suggest that adults with mental disorders (MD) or Autism Spectrum Disorder (ASD) are more likely to be unemployed than those without MD. However, it is unclear whether working adults with MD or ASD perceive the same effort-reward balance as their counterparts without MD or ASD.ObjectivesTo analyze labor conditions and to identify factors associated with effort-reward imbalance among young adults with ASD, MD and those from the general population (GP).MethodsA qualitative and quantitative study design is being conducted to analyze the rates of employment among young adults with ASD, and to identify factors associated with employment rates (Fondecyt ID11201028.). As part of this study, we conducted a quantitative analysis in young adults 16 to 30 years of age in two regions of Chile between August and October, 2022. Young adults with MD and ASD were compared with adults of similar age recruited from the GP. We applied a questionnaire to collect data on participant’s sociodemographic information, autonomy level and employment status. We applied the short Spanish version of the effort–reward imbalance (ERI) and overcommitment (OC) questionnaire, which has been widely used in Latin American countries.Chi-square test was used and the Kruskal Wallis H Test was applied to compare among groups. The statistical significance was set at P<0.05.ResultsOverall, 422 participants were included in the analysis (mean age 22±3.2, 64.2% women, 65.2% students, and 4.4% unemployed). Of the total respondents, 22% of young adults from GP, 17.8% with MD, and 4.8% with ASD were working at the moment of the survey. Regarding autonomy level, a higher proportion of participants with ASD needed support (36.4%), compared with 9.7% and 0.8% of young adults with MD and GP, respectively. Of the population who reported working (n=125), about 56.0% have a permanent job, and 44% a seasonal or occasional job. The median value for the effort–reward ratio was 0.96 (range 0.4–1.8), with no significant differences between the groups. Of those participants working, 44.3% showed an ERI ratio higher than 1, which was higher in participants with ASD (60%). ERI-esteem was significantly different (P=0.01) among ASD (7.0; range 5-8), MD (6.0; range 2-8) and PG (6.0; range 2-8). In the OC questionnaire, young adults with ASD were more likely to think about work (P=0.01) and having trouble sleeping at night due to work issues (P=0.03) than GP and MD groups.ConclusionsThe ASD group showed higher overcommitment and a considerable proportion of subjects at risk of effort-reward imbalance at work, were more likely to think about work at home, and had trouble sleeping thinking about work. Our preliminary results highlight the importance of considering the working conditions of young adults diagnosed with ASD and the need to provide them with enough support to promote labor inclusion.Disclosure of InterestNone Declared

  • Research Article
  • Cite Count Icon 54
  • 10.3233/jvr-170922
Job searching, job duration, and job loss among young adults with Autism Spectrum Disorder
  • Feb 26, 2018
  • Journal of Vocational Rehabilitation
  • Xin Wei + 6 more

Job searching, job duration, and job loss among young adults with Autism Spectrum Disorder

  • Research Article
  • Cite Count Icon 40
  • 10.1177/13623613231169058
Effects of physical activity and exercise-based interventions in young adults with autism spectrum disorder: A systematic review.
  • May 1, 2023
  • Autism : the international journal of research and practice
  • Vaishnavi Shahane + 2 more

Young adults with autism spectrum disorder over 18 years of age are an underserved population, and there is presently limited evidence examining the effects of physical activity programs in this population. Our review synthesizes the evidence to date from studies that have assessed the effects of physical activity/exercise programs in young adults with autism spectrum disorder between 19 and 30 years. We reviewed 22 studies that included a total of 763 young adults with autism spectrum disorder. There is the strongest evidence for improvements in physical fitness, followed by motor skills, psychological function, and quality of life following physical activity interventions in young adults with autism spectrum disorder. Specifically, aerobic and resistance training as well as programs focused on movement skill and sport-specific training lead to improved physical fitness and movement performance. Holistic interventions focusing on physical activity, dietary changes, and lifestyle modifications lead to improvements in body composition and quality of life of young adults with autism spectrum disorder. There is presently limited evidence to support the use of exercise/activity programs to improve physical activity levels and core autism symptoms in young adults with autism spectrum disorder. Based on our review results, we also provide practical recommendations for clinicians working with young adults with autism spectrum disorder.

  • Discussion
  • Cite Count Icon 4
  • 10.1111/apa.14589
Further studies of GABA and Glutamate imbalances in autism are important challenges for future research.
  • Oct 25, 2018
  • Acta paediatrica (Oslo, Norway : 1992)
  • Elisabeth Fernell

In the study by Khalifa et al. in this issue of Acta Paediatrica 1, levels of the excitatory neurotransmitter glutamate were analysed in a clinical sample of young children aged 3–10 years with autism spectrum disorders (ASD). The 30 children were randomly selected from the ASD Outpatient Clinic at the Abou El-Reesh Hospitals, Cairo University and compared to 30 randomly selected controls, without any mental disorders or major medical illnesses, whose siblings were attending another outpatient clinic at the hospital. The prevalence of ASD has been the subject of many studies, and, as the authors report, many of which have reported a dramatic increase during the last decade. A Swedish study 2 reported that considerably fewer ASD symptoms now seemed to be required for a clinical diagnosis of ASD, particularly after the preschool years. These findings suggest that increases in ASD diagnoses could be partly due to how ASD is diagnosed. The increased level of serum glutamate that was found by Khalifa et al. 1 is interesting and in line with other studies of serum glutamate in children with autism that they refer to and has clinical and further research implications. As the authors point out, glutamate is one of the major excitatory neurotransmitters in the human brain and plays a significant role in brain development, cell migration, synapse induction and cell differentiation. It is also involved in a wide range of neural and cognitive functions, such as learning and memory. Although glutamate does not cross the blood–brain barrier readily, levels of glutamate in blood and cerebrospinal fluid have been positively correlated in humans, suggesting that peripheral glutamate levels can reflect the glutamate level in the brain 3. In an early study (1992) 4, the concentration of glutamate, but of no other amino acid, was markedly elevated in the cerebrospinal fluid of patients with Rett syndrome, a genetic disorder characterised by the loss of functions and in many cases a period with autistic features. Attempts to understand the pathobiology of the glutamatergic system have led to new investigational treatments for ASD. The potential implications of modulating the glutamatergic system while treating ASD, by using specific drugs that affect glutamatergic receptors, have been explored in preclinical and clinical studies. These have specifically targeted the NMDA receptors (agonists and antagonists), the AMPA/kainate receptors (antagonists) and metabotropic glutamate receptor 5 (mGluR5) (antagonists) and other mechanisms in the glutamatergic system 5. However, despite the potentially encouraging preliminary findings of clinical trials using glutamate, there are several limitations. These are mainly associated with the fact that ASD is a very heterogeneous disorder with many potential aetiologies, including those where a glutamatergic dysfunction might not play a key role in the pathophysiology 5. There is a growing interest in this area, and studies have indicated an imbalance in excitatory (glutamatergic) and inhibitory γ-aminobutyric acid (GABAergic) neurotransmission in ASD 1. Although GABA is best known as an inhibitory neurotransmitter, it can be either inhibitory or excitatory, depending on intraneuronal (Cl−), which is modulated by two isoforms of the cation-Cl− cotransporter family. These are NKCC1, an isoform of the Na+-K+-2Cl− cotransporter, and KCC2, an isoform of the K+-Cl− cotransporter. NKCC1 transports Cl−, along with Na+ and K+, into the neuron, which increases (Cl−) leading to depolarisation (excitatory state) on the opening of Cl− channels, such as GABA-A receptors. KCC2 transports Cl−, along with K+, out of the neuron, which decreases (Cl−) leading to hyperpolarisation (inhibitory state) with Cl− channel opening 6. NKCC1 is widely distributed throughout the body and is also found in neurons 6. Normally, adult neurons have low intracellular chloride levels underlying the GABAergic inhibitory drive. In contrast, there are high chloride levels and concomitant excitatory GABA actions in a wide range of pathological conditions. Reducing GABAergic inhibition produces neuronal hyperexcitability, and can lead to deleterious neurological and psychiatric sequelae, including ASD 7. These observations have raised considerable interest in the development of pharmacological treatments that restore physiological (Cl−) levels and GABAergic inhibition in pathological conditions 7, 8. Based on animal studies of autism, revealing that the NKCC1 chloride-importer inhibitor bumetanide restores physiological chloride levels and enhances GABAergic inhibition, clinical treatment studies have been performed and published by a French group from 2010 onwards 7, 8. In 2017, this group published a double-blind, randomised, placebo-controlled, multisite study that assessed the efficacy, safety, pharmacokinetics and the optimal dose of bumetanide in children and adolescents with ASD, including Asperger's syndrome 7. The study group consisted of 88 children and adolescents aged 2–18 years, and the treatment period was 3 months. The findings showed that bumetanide improved core symptoms of ASD and presented a favourable benefit/risk ratio, particularly when 1.0 mg of bumetanide was administered twice daily. The frequency and incidence of adverse events were directly correlated with the bumetanide dose 7. Another study was carried out by the French group based on findings that constraining eye contact leads to an exaggerated increase in amygdala activation in ASD. Functional magnetic resonance imaging and eye tracking were performed on adolescents and young adults with high-functioning ASD before and after bumetanide. This revealed that bumetanide normalised the amygdala activation levels during constrained eye contact with dynamic emotional face stimuli. In addition, eye-tracking data revealed that bumetanide increased the time spent in spontaneous eye gaze during a free-viewing mode of the same face stimuli. The data support the excitatory/inhibitory dysfunction hypothesis for ASD and indicate that bumetanide may improve specific aspects of social processing in ASD 9. The results from the bumetanide studies are interesting and promising and should be followed up by further, large double-blind placebo-controlled trials in patients with ASD. It would be preferable if these included different aetiologically and clinically defined subgroups, for example ASD with coexisting intellectual disability, attention-deficit hyperactivity disorder, epilepsy and those with other coexisting developmental disorders. If possible, these should include approaches to monitor the molecular mechanisms of medication responses. Along with data from a meta-analysis, Khalifa et al. 1 discussed the potential role of glutamate as a biomarker of ASD but underscored that larger sample studies are needed to verify whether it can be used for early detection of autism. However, since the findings of higher glutamate levels seem to be prevalent in many central nervous system disorders, it would be necessary to base any diagnosis of ASD on a full clinical neurodevelopmental assessment, including evaluation of the ASD symptom criteria. Autism spectrum disorder is a highly heterogeneous neurodevelopmental disorder, with regard to its aetiology and clinical presentation 10, and most patients with ASD have at least one coexisting neurodevelopmental or neuropsychiatric disorder. These include intellectual disability, attention-deficit hyperactivity disorder, developmental language disorder, anxiety disorders, tic disorders, obsessive-compulsive disorder, feeding, sleeping and eating disorder, motor coordination disorder, epilepsy and, or, other types of specific problems, including mood dysregulation, sensory abnormalities and self-harm behaviour. An important challenge for future research is to explore the extent to which glutamatergic and GABAergic imbalance underlies specific subsets of patients with ASD. The studies to date are encouraging and support possible and promising pharmacological treatment options to improve functioning in individuals with ASD by targeting the glutamatergic and GABAergic systems. The author has no conflict of interests to report.

  • Research Article
  • Cite Count Icon 23
  • 10.1177/1362361319900422
Sluggish cognitive tempo: An examination of clinical correlates for adults with autism.
  • Feb 7, 2020
  • Autism
  • Alexis M Brewe + 3 more

Adults with autism spectrum disorder often experience a range of co-occurring mental health problems such as attention-deficit/hyperactivity-disorder, as well as difficulties with executive function. Sluggish cognitive tempo, a cluster of behaviors including slow processing, daydreaming, and mental fogginess, has been shown to be associated with attention-deficit/hyperactivity-disorder, and limited research has suggested that individuals with autism spectrum disorder may experience sluggish cognitive tempo. We examined co-occurring mental health problems and executive function in 57 young adults with autism spectrum disorder, aged 16-25 years to better understand sluggish cognitive tempo in autism spectrum disorder. Parents of the young adults answered questions about their children's sluggish cognitive tempo, attention-deficit/hyperactivity-disorder, depression, and anxiety symptoms, and the young adults completed tests of their executive function. Results demonstrated that nearly one-third of the sample exhibited clinically impairing levels of sluggish cognitive tempo. Although sluggish cognitive tempo and attention-deficit/hyperactivity-disorder symptoms were related, our findings suggest they are not the same constructs. Increased sluggish cognitive tempo is related to more difficulties with executive function and increased depression, but not anxiety symptoms. Results demonstrate that sluggish cognitive tempo may pose heightened difficulties for adults with autism spectrum disorder, making it an important construct to continue studying. Considerations for assessment and long-term impacts of sluggish cognitive tempo for adults with autism spectrum disorder are discussed.

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