Improving outcomes for people with autism spectrum disorders by reducing mental health problems: the IAMHealth research programme including one RCT

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. ISSUES NewArchived

Background Attention-Deficit/Hyperactivity Disorder (ADHD) is the most common neurodevelopmental disorder in children (Polanczyk, Willcutt, Salum, Kieling, & Rohde, 2014) and is highly comorbid with Autism Spectrum Disorder (ASD) (Green et al., 2015; Kotte et al., 2013). Although it is well established that children with ADHD or ASD and their families experience poorer functioning including child and parent mental health problems, child peer problems, poorer family quality of life (FQoL) and parenting difficulties, it is unknown how comorbid ASD symptoms contribute to child and family functioning in children with ADHD. It is important to understand which comorbidities contribute to poorer child and family functioning to guide treatment planning. Aims This study aimed to examine the prevalence of ASD symptoms in children with ADHD and the association between ASD symptoms and child and family functioning across three connected studies. The specific aims of each study are outlined below. Study 1. To examine the prevalence and type of ASD symptoms (social interaction, communication and stereotyped behaviour) in children with ADHD and non-ADHD controls. Within the ADHD group only, we also examined the relationship between ADHD subtype, hyperactive/impulsive and inattentive symptoms, ADHD symptom severity and child gender and ASD symptom severity. Study 2. To examine the association between ASD symptoms and (a) social functioning; (b) mental health; (c) quality of life and (d) sleep, in children with and without ADHD. Study 3. To examine the association between ASD symptoms (measured dimensionally) in children with and without ADHD and a broad range of family functioning variables and to examine differences between ADHD+ASD, ADHD and control groups on family functioning variables. Methods Participants were 6-10 year old children (164 ADHD; 198 non-ADHD control) attending 43 schools in Melbourne, Australia, who were participating in the Children’s Attention Project. ADHD was assessed in two stages using the parent and teacher Conners’ 3 ADHD index and the Diagnostic Interview Schedule for Children IV (DISC-IV). ASD symptoms were identified using the Social Communication Questionnaire (SCQ). Child functioning measures were social functioning (Strengths and Difficulties Questionnaire (SDQ), mental health (DISC-IV, SDQ), quality of life (QoL: Pediatric Quality of Life Inventory 4.0) and sleep problem severity. Family functioning outcome variables were parent mental health, family quality of life (FQoL), and scales assessing couple conflict, couple support and parenting behaviours. Unadjusted and adjusted linear and logistic regression examined continuous and categorical outcomes, respectively. Results Study 1. Children with ADHD had more ASD symptoms than non-ADHD controls (adjusted mean difference = 4.0, 95% confidence interval (CI) 2.8; 5.3, p < 0.001, effect size = 0.7). Boys with ADHD had greater ASD symptom severity than girls with ADHD (adjusted mean difference = 2.9, 95% CI 0.8; 5.2, p = 0.01, effect size = 0.4). Greater ADHD symptom severity was associated with greater ASD symptom severity (regression co-efficient = 1.6, 95% CI 1.2; 2.0, p < 0.001). No differences were observed by ADHD subtype. Greater hyperactive/impulsive symptoms were associated with greater ASD symptoms (regression coefficient = 1.0; 95% CI 0.0; 2.0, p = 0.04) however, this finding attenuated in adjusted analyses, which accounted for parent educational attainment, socioeconomic status, child internalising and externalising comorbidities (p = 0.45). Study 2. Each standard deviation (SD) increase in SCQ scores was associated with a 6.7 unit reduction in QoL (p < 0.001) and greater parent and teacher-reported peer problems, emotional and conduct problems. For every SD increase in SCQ scores, internalising (OR = 1.8, 95% CI 1.3, 2.6, p = 0.001) and externalising disorders (OR = 1.5, 95% CI 1.1, 2.1, p = 0.02) increased, as did moderate/severe sleep problems (OR = 1.5, 95% CI 1.0, 2.2, p = 0.04). Most findings held in analyses adjusting for socio-demographic factors, ADHD symptom severity, and comorbidities (when not the outcome), with the exception of externalising disorders and sleep problems. Study 3. In unadjusted dimensional analyses, higher ASD symptoms were associated with more couple conflict (p = 0.04) and poorer FQoL for all subscales (p ≤ 0.001), with non-significant trends for less couple support (R2 = 0.10, p = 0.06), more hostile parenting (R2 = 0.02, p = 0.06) and poorer parent mental health (R2 = 0.02, p = 0.07). In adjusted dimensional analyses, higher ASD symptoms were only associated with poorer FQoL, across all subscales only (p ≤ 0.01). The trend association between ASD symptoms and parent mental health attenuated due to meaningful associations with comorbid internalising disorder (p = 0.003) and ADHD symptom severity (p = 0.05). The trend association between ASD symptoms and hostile parenting attenuated due to significant associations with comorbid externalising disorders (p = 0.002), lower parent education attainment (p = 0.03) and greater ADHD symptom severity (p = 0.04). Less couple support attenuated due to a significant association with socioeconomic status (p = 0.004). In unadjusted categorical analyses, parents of children with ADHD+ASD reported more couple conflict (p = 0.04), less couple support (p = 0.001), poorer FQoL (p <0.001) and a non-significant trend for greater mental health difficulties (p = 0.07), compared to the ADHD group. In adjusted categorical analyses, parents of children with ADHD+ASD had poorer parent self-efficacy (p = 0.02), poorer FQoL (p < 0.05) (p < 0.05) and a non-significant trend for less couple support (p = 0.06), compared to parents of children with ADHD. In unadjusted categorical analyses, family functioning was significantly poorer for the ADHD and ADHD+ASD groups, compared to controls for most outcomes (p <0.001). In adjusted categorical analyses, all findings attenuated except FQoL was significantly poorer for the ADHD and ADHD+ASD groups, compared to controls. Conclusion ASD symptoms are common, and associated with poorer functioning in children with ADHD. It is important for clinicians working with children with ADHD to identify and manage ASD symptoms, given that they exacerbate functional impairments in this already vulnerable group. The relationship between ASD symptoms and broader family functioning appears to be largely driven by internalising and externalising disorders, ADHD severity, and socioeconomic status. Poorer FQoL appears to be independently associated with ASD symptoms in children with ADHD.

Back to table of contents Previous article Next article Clinical & ResearchFull AccessComorbidities Increase Suicide Risk in People With AutismTerri D'ArrigoTerri D'ArrigoSearch for more papers by this authorPublished Online:3 Mar 2021https://doi.org/10.1176/appi.pn.2021.3.2AbstractThe protective effects of higher education, marriage, and partnership may not apply to people who have autism.People with autism spectrum disorder (ASD) have more than three times the rate of suicide and suicide attempts than people without ASD, a study in JAMA Network Open has found. Furthermore, the vast majority of those with ASD who attempt or die by suicide have comorbid psychiatric conditions.A higher educational level may help make people with ASD aware of how they differ from those without the condition, says Kairi Kõlves, Ph.D.Justin MAKairi Kõlves, Ph.D., a co-director of the WHO Collaborating Centre for Research and Training in Suicide Prevention at Griffith University in Mount Gravatt, Queensland, Australia, and colleagues analyzed data collected by the Danish Civil Registration System between January 1995 and December 2016 from more than 6.5 million people in Denmark aged 10 years or older. Among those individuals, 35,020 had received a diagnosis of ASD. There were 64,109 suicide attempts among all registered individuals, 587 of them by people with ASD, and there were 14,197 suicides, 53 of them by people with ASD.The researchers found that people with ASD had 3.19 times the rate of suicide attempts and 3.75 times the rate of suicide of those without ASD. Compared with people who did not have any psychiatric disorders, people diagnosed with only ASD had 1.33 times the rate of suicide attempts, and people who had comorbid psychiatric disorders in addition to ASD had 9.27 times the rate of suicide attempts.“Some potential reasons [for this heightened risk] may include the different social needs and skills of people with ASD, which … may lead people with ASD into further isolation and leave them without required care,” Kõlves told Psychiatric News. “However, this should be further studied using qualitative research methods.”More than 90% of people with ASD who attempted suicide or died by suicide had at least one other psychiatric condition. The most common comorbid psychiatric conditions among those with ASD who attempted suicide or died by suicide were anxiety disorders and affective disorders.These findings struck Eric Hollander, M.D., director of the Autism and Obsessive Compulsive Spectrum Program at Albert Einstein College of Medicine and Montefiore Medical Center in New York. He is also a professor of psychiatry at Albert Einstein College of Medicine.“The most important finding in this study is that comorbidities are driving these negative outcomes. As individuals with ASD age, a lot of the symptoms of comorbid conditions can become more apparent,” said Hollander, who was not involved in the research. “However, there is not enough expertise among people who work with individuals with ASD in identifying comorbidities in this population and treating them.”Hollander explained that health professionals who focus on ASD tend to work with children, most of whom have yet to develop comorbidities, whereas health professionals who work with adults with ASD, such as neurologists, are less likely to identify mood disorders. He added that mental health professionals who focus on psychiatric disorders do not always have a strong understanding of how ASD presents across the lifespan.“This research is important because it shows what the long-term trajectory may be for individuals with ASD and how their challenges may change as they age,” Hollander said. The study revealed that females with ASD had 4.41 times the rate of suicide attempts compared with males with the disorder.“In general, a higher risk of a suicide attempt in females is not unusual. However, the magnitude of the difference [among people with ASD] is rather surprising,” Kõlves said. She noted that girls and young women with ASD are often diagnosed later in life than their male peers, partly because they may mask their symptoms by behaving in socially expected ways, so their difficulties establishing and retaining social and intimate relationships remain unaddressed for longer periods of time. This in turn may explain the higher rates of suicidal behavior among girls and women, although further research is necessary, Kõlves added.The study also found that higher education, marriage, or having a partner did not appear to offer people with ASD any protection from risk the way they offer protection to those without ASD.“A higher educational level may contribute to a greater awareness of their differences [from others], which may result in alienation from family and society at large and bring further social anxiety and isolation,” said Kõlves. She added that a higher level of cognitive functioning may afford a greater understanding of methods of suicide and how to obtain the means to carry it out.Hollander noted the interplay between people with ASD and their environment.“The people who are higher functioning are more likely to be in the mainstream world and face the academic or job-related stresses of the mainstream world, but they are less likely to be able to advocate for themselves and access the resources they need,” he said. ■This study was supported by the Danish Health Foundation and by the Griffith University Research Fellowship. “Assessment of Suicidal Behaviors Among Individuals With Autism Spectrum Disorder in Denmark” is posted here. ISSUES NewArchived

Autism spectrum disorder is a neurodevelopmental condition characterized by social communication difficulties and restricted repetitive behaviors. Individuals with autism spectrum disorder are often diagnosed with other psychiatric conditions, including attention deficit hyperactivity disorder, anxiety, and depression. However, research on post-traumatic stress disorder among individuals with autism spectrum disorder is scarce. Nonetheless, studies have shown that those with autism spectrum disorder may face an increased risk of exposure to traumatic events. Separate lines of research in autism spectrum disorder and post-traumatic stress disorder have shown that the two may share several vulnerability factors. One of those is ruminative thinking, that is, one's tendency to re-hash thoughts and ideas, in a repetitive manner. This article examined the role of two rumination types as potential factors connecting autism spectrum disorder and post-traumatic stress disorder: brooding (continuously comparing one's current condition to one's desired condition) and reflection (an introspective effort to cognitively solve one's problems). A total of 34 adults with autism spectrum disorder (with no intellectual impairment) and 66 typically developing adults completed questionnaires assessing post-traumatic stress disorder symptoms and rumination. The results showed increased post-traumatic stress disorder symptoms in adults with autism spectrum disorder, compared to typically developing adults. Brooding rumination was also higher among those with autism spectrum disorder. Finally, brooding, but not reflection, served as a mechanism connecting autism spectrum disorder and post-traumatic stress disorder, that is, those with autism spectrum disorder showed increased brooding, which in turn predicted more post-traumatic stress disorder symptoms. This study has potential clinical implications. Rumination and cognitive inflexibility, which are common in autism spectrum disorder, could exacerbate post-traumatic symptoms among individuals with autism spectrum disorder who experience traumatic events. Interventions targeting brooding rumination and cognitive flexibility may assist in alleviating post-traumatic symptoms in individuals with autism spectrum disorder.

Autism spectrum disorder (ASD) is characterized by multifactorial etiology and high heritability but can be challenging to be diagnosed, especially in cases presenting subthreshold symptoms with no cognitive or language impairment, which may not be identified until adulthood but may occur in family members of subjects with ASD. This study explores the possible correlation between a genomic imbalance and clinical phenotypes in a family case of a proband with ASD, with subjects presenting full-blown or subthreshold ASD and/or mood disorders. Clinical assessments were carried out by means of the Structured Clinical Interview for DSM-5 (SCID-5) disorders, Autism Spectrum Quotient (AQ), Autism Diagnostic Interview–Revised (ADI-R), Autism Diagnostic Observation Schedule Module 2 (ADOS-2), and Adult Autism Subthreshold Spectrum (AdAS Spectrum). The genetic evaluation included array comparative genomic hybridization (array-CGH). The proband was diagnosed with ASD and bipolar disorder type I (BD-I), her twin brothers with ASD and intellectual disability (ID), and her father and sister with BD type II (BD-II) and autism traits. The proband, her father, twin brothers, and older sister showed a microduplication of 350 kb in 20q11.21. In contrast, the proband’s mother did not present the microduplication or any mental disorder. This study reports a microduplication that segregates with family members affected by ASD or autistic traits comorbid in some cases with bipolar disorder, and that has never been reported in healthy subjects. Among the genes harbored in this region, the TM9SF4 gene has been recently implicated in risk for ASD.

Special Report: Autism Spectrum Disorder and Inflexible Thinking—Affecting Patients Across the Lifespan

The intersection of autism spectrum disorder and intellectual disability

Recent research has suggested that people with autism spectrum disorder may be disproportionately at risk of substance use disorders. This study analyzed national-level Medicaid Claims data to compare substance use disorder prevalence among Medicaid enrollees with autism spectrum disorder (N = 388,426) and a random sample of enrollees without autism spectrum disorder (n = 745,699) and to examine whether this association differs across sex and age groups and changes after adjusting for co-occurring mental health conditions. We also examined how the association between autism spectrum disorder and substance use disorder is moderated by co-occurring non-autism spectrum disorder mental health conditions and by community-level social determinants of health by merging Medicaid Claims data with zip code-level US Census data on socioeconomic deprivation. By 2016, 7% of Medicaid beneficiaries with autism spectrum disorder and no intellectual disability had at least one substance use disorder diagnosis, up from 1.75% USD prevalence among enrollees with autism spectrum disorder (no intellectual disability) in 2012 Medicaid data. Individuals with autism spectrum disorder aged 30-64 years were at an elevated risk of cannabis and hallucinogen disorders; this risk is likely compounded by co-occurring mental health conditions, which affect a half of all individuals with autism spectrum disorder and only 23% of individuals without autism spectrum disorder. Research and policy implications are discussed in turn.Lay abstractRecent research has suggested that people with autism spectrum disorder may be disproportionately at risk of substance use disorders. The present study analyzed national-level Medicaid Claims data to compare substance use disorder prevalence among Medicaid beneficiaries with autism spectrum disorder and without autism spectrum disorder and to examine whether this association differs across sex and age groups and depends on mental health conditions besides autism. We also examined how the association between autism spectrum disorder and substance use disorder is moderated by co-occurring non-autism spectrum disorder mental health conditions and by community-level social determinants of health. For the latter purpose, Medicaid Claims data were merged with zip code-level US Census data on socioeconomic deprivation. Our analyses demonstrated that, by 2016, 7% of Medicaid enrollees with autism spectrum disorder and no intellectual disability had at least one substance use disorder diagnosis, up from 1.75% USD prevalence among enrollees with autism spectrum disorder (no intellectual disability) in 2012 Medicaid data. Individuals with autism spectrum disorder aged 30-64 years are at an elevated risk of cannabis and hallucinogen use disorders, while this risk is likely compounded by co-occurring mental health conditions, which affect a half of all individuals with autism spectrum disorder and only 23% of individuals without autism spectrum disorder. Research and policy implications are discussed in turn.

Advances in Our Understanding of Genetic Risk Factors for Autism Spectrum Disorders

Background. Clinical polymorphism and polymorphism are inherent in the clinical phenotype of children with autism spectrum disorders (ASD). There is a consensus, relatively high, between 5% and 38% of the prevalence of epilepsy in ASD. There are reasons to believe that ASD with epilepsy and specific epileptic activity on EEG and ASD with hyperkinetic symptoms without signs of epileptic process can be determined by different variants of genetic polymorphism or by different variants of gene expression, determined by different influences. Objective – to study the features of the clinical phenotype of ASD in preschool and school-age children with epileptic seizures and specific epileptic activity on EEG. Materials and methods. In the Department of Mental Disorders of Children and Adolescents of the Institute of Psychiatry of the Ministry of Health of Ukraine 116 children aged 2-10 years with ASD were examined. The study group was divided into three subgroups: subgroup A – 23 children with a history of epileptic seizures, subgroup B – 35 children with specific forms of epileptic activity on EEG without epileptic seizures, subgroup C – 19 children with ASD having specific epileptic activity for EEG repetitive involuntary movements (motor stereotypes, motor tics) and vocalizations (vocal tics). The control group consisted of 39 children with ASD non a history of seizures and specific epileptic activity on the EEG. The follow-up of children with ASD in the comparison groups was performed for 1-1.5 years. We used such research methods: clinical-psychopathological, psychodiagnostic, psychometric, statistical. Results. In children with ASD and comorbid epileptic seizures, disorders of social reciprocity are of crucial diagnostic importance. Communication disorders and recurrent, stereotyped behaviors, movements, and interests in children in this group are significantly less common than in comparison groups. Incidents of repetitive stereotypes in these children are associated with sensory impairments and autostimulations. Children with ASD, complicated by severe and frequent epileptic seizures, are characterized by impaired social reciprocity and communication against the background of regression or stagnation of speech and motor skills development. Disorders of communication and repetitive behavior in ASD in children of different ages are represented by different monoqualitative syndrome (phenotypes). Younger children less than 6 years of age are dominant in stereotypical movements, while children aged 6-8 years have repetitive behaviors associated with the overriding interests. Two subtypes of clinical phenotypes of ASD were identified: the variant with symptoms, which more closely determined the stereotypical sensor and motor behavior and the variant with symptoms of insistence on equality, with the overriding interests of preservation, identity. Movement stereotypes predominated in children with ASD without epileptic seizures and without epileptic activity on EEG. In children with ASD and epileptic activity on EEG, motor stereotypes and repetitive identity-preserving behavior were equally common. Conclusions. Disorders of social reciprocity, communication, repetitive behavior, in particular stereotyped movements are diagnostically significant signs of ASD, in particular ASD complicated by epileptic seizures, ASD with specific epileptic activity on EEG. According to the results of a long 1-1.5 years’ prospective study, it was established that the clinical phenotype of ASD with epileptic seizures, ASD without epileptic seizures with specific epileptic activity on EEG and RAS without epileptic seizures and changes in EEG are characterized by differing clinical picture and course. Qualitative communication disorders and stereotypical movements in addition to ASD are observed in other psychiatric disorders, including Tourette disorder, obsessive-compulsive disorders, and intellectual disability. Expressed repeated identity-preserving behavior is the basis for dual diagnosis of ASD and obsessive-compulsive disorder. Motor and vocal tics may be the basis for dual diagnosis of ASD and Tourette’s disorder. The presence of age-related pathoplasty of clinical manifestations of ASD in the comparison groups was established.

New Zealand has few estimates of the prevalence of autism spectrum disorder and no national registry. The use of administrative data sources is expanding and could be useful in autism spectrum disorder research. However, the extent to which autism spectrum disorder can be captured in these data sources is unknown. In this study, we utilised three linked administrative health data sources from the Integrated Data Infrastructure to identify cases of autism spectrum disorder among New Zealand children and young people. We then investigated the extent to which a range of mental health, neurodevelopmental and related problems co-occur with autism spectrum disorder. In total, 9555 unique individuals aged 0–24 with autism spectrum disorder were identified. The identification rate for 8-year-olds was 1 in 102. Co-occurring mental health or related problems were noted in 68% of the autism spectrum disorder group. The most common co-occurring conditions were intellectual disability, disruptive behaviours and emotional problems. Although data from the Integrated Data Infrastructure may currently undercount cases of autism spectrum disorder, they could be useful for monitoring service and treatment-related trends, types of co-occurring conditions and for examining social outcomes. With further refinement, the Integrated Data Infrastructure could prove valuable for informing the national incidence and prevalence of autism spectrum disorder and the long-term effectiveness of clinical guidelines and interventions for this group.Lay abstractNew Zealand has few estimates of the prevalence autism spectrum disorder and no national registry or data set to identify and track cases. This hinders the ability to make informed, evidence-based decisions relating to autism spectrum disorder. In this study, we utilised linked health and non-health data to develop a method for identifying cases of autism spectrum disorder among children and young people in New Zealand. In addition, we examined rates of co-occurring mental health, neurodevelopmental and related conditions among this cohort and compared these to the general population. The method identified almost 10,000 children and young people with autism spectrum disorder in New Zealand. Co-occurring mental health or related problems were found in over 68% of this group (nearly seven times higher than the general population), and around half were identified with multiple co-occurring conditions. The most frequently identified conditions were intellectual disability, disruptive behaviours and emotional problems. We have developed a useful method for monitoring service and treatment-related trends, number and types of co-occurring conditions and examining social outcomes among individuals with autism spectrum disorder. While the method may underestimate the prevalence of autism spectrum disorder in New Zealand, it provides a significant step towards establishing a more comprehensive evidence base to inform autism spectrum disorder–related policy.

There has been a rise in the observed prevalence of autism spectrum disorder among children. Existing studies show the share of counties with a treatment facility that offers care for children with autism spectrum disorder. However, no estimates exist of the share of US outpatient mental health treatment facilities that provide services for children with autism spectrum disorder. We identified key facility-level characteristics in offering mental health care for children with autism spectrum disorder. We used a telephone survey to contact almost all outpatient mental health treatment facilities in the contiguous United States. We asked the facilities if they provided mental health care for children with autism spectrum disorder. We took the results of this survey and estimated multivariable regressions to examine county- and facility-level predictors of offering services. We found that over half (50.3%) of the 6156 outpatient facilities reported offering care for children with autism spectrum disorder. Non-metro counties, counties with a lower percentage of non-White residents, counties with a higher percentage of uninsured residents, and counties with a higher poverty rate had fewer outpatient mental health treatment facilities providing care for children with autism spectrum disorder. Facilities accepting Medicaid as a form of payment, offering telehealth, and private for-profit facilities were more likely to provide services for children with autism spectrum disorder. Because only half of outpatient mental health treatment facilities offer care for children with autism spectrum disorder, public health officials and policymakers should do more to ensure that this vulnerable population has access to mental health services.

PURPOSE The main objective of the study was to examine health care disparities for children with autism spectrum disorders utilizing two studies. Study 1: To examine the caregiver perceived access to services, quality of care, and family impact for children with Autism Spectrum Disorders (ASD), as compared to caregivers of children with other developmental disabilities (DD) and mental health conditions (MHC). Study 2: To examine the impact of state health policies (Medicaid Income Eligibility and Autism Mandate) and Workforce (Child to Pediatrician Ratio and Number of Special Education Teachers) on perceived access to services and family impact for caregivers of children with ASD. METHOD Study Design: Cross-sectional survey Data: National Survey of Children with Special Health Care Needs 2009-2010, a nationally representative data for US civilian non-institutionalized population with children aged 0-17 years. Outcome Measures: Access to care was measured as: difficulty using services, difficulty getting referrals, lack of usual source of care, and inadequate insurance coverage. Quality of care was assessed as problems reported with: care coordination, lack of shared decision making, and no routine screening. Family impact was measured via: financial, employment, and time related burden. Study 1 Study sample: All the children in the age group of 3-17 years with a caregiver reported current diagnosis of ASD, DD without ASD, MHC without ASD, or DD & MHC without ASD were identified (N = 18,702). Methods: A cross sectional study was conducted using the 2009-2010 National Survey of Children with Special Health Care Needs (N = 18,702). Chi-square analyses and logistic regressions were performed to examine the likelihood of reporting problems with access to services, quality of care, and family impact and compared across ASD, DD (cerebral palsy, down syndrome, developmental delay, or mental retardation), MHC (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression) and DD & MHC (those who had both DD and MHC) group, after adjusting for socio-demographics, number of special children in the household, child’s functional ability, and presence of a physical condition. All analyses were adjusted for complex survey design. Results: Access to Services: ASD caregivers were significantly more likely to have difficulty using services as compared to DD, MHC, and DD & MHC caregivers. ASD caregivers were more likely to report inadequate insurance coverage as compared to MHC, and DD but not DD & MHC caregivers. Quality of care: ASD caregivers were more likely to report lack of shared decision making, as compared to DD, MHC, and DD & MHC caregivers. ASD caregivers were also more dissatisfied with care coordination as compared to DD, MHC and DD & MHC caregivers. Family Impact: ASD caregivers were more likely to have financial burden as compared to DD and MHC, but not DD & MHC caregivers. ASD caregivers were also found to be more likely to have employment burden, as compared to DD, MHC, and DD &…

Diagnostic accuracy of autism spectrum disorder (ASD) is crucial to track and characterize ASD, as well as to guide appropriate interventions at the individual level. However, under-diagnosis, over-diagnosis, and misdiagnosis of ASD are still prevalent. We describe 232 children (MAge = 10.71 years; 19% female) with community-based diagnoses of ASD referred for research participation. Extensive assessment procedures were employed to confirm ASD diagnosis before study inclusion. The sample was subsequently divided into two groups with either confirmed ASD diagnoses (ASD+) or unconfirmed/inaccurate diagnoses (ASD-). Clinical characteristics differentiating the groups were further analyzed. 47% of children with community-based ASD diagnoses did not meet ASD criteria by expert consensus. ASD + and ASD- groups did not differ in age, gender, ethnicity, or racial make-up. The ASD + group was more likely to have a history of early language delays compared to the ASD- group; however, no group differences in current functional language use were reported by caregivers. The ASD + group scored significantly higher on ADI-R scores and on the ADOS-2 algorithm composite scores and calibrated severity scores (CSSs). The ASD- group attained higher estimated IQ scores and higher rates of psychiatric disorders, including anxiety disorder, disruptive behavior, and mood disorder diagnoses. Broadly, caregiver questionnaires (SRS-2, CCC-2) did not differentiate groups. Increased reported psychiatric disorders in the ASD- group suggests psychiatric complexity may contribute to community misdiagnosis and possible overdiagnosis of ASD. Clinician-mediated tools (ADI-R, ADOS-2) differentiated ASD + versus ASD- groups, whereas caregiver-reported questionnaires did not.

Risk of psychiatric comorbidity with autism spectrum disorder and its association with diagnosis timing using a nationally representative cohort