Melatonin use in managing insomnia in children with autism and other neurogenetic disorders - An assessment by the international pediatric sleep association (IPSA).

Though it is widely prescribed for improving sleep of children with autism and other neurogenetic disorders, there is a need for practical guidance to clinicians on the use of melatonin for managing insomnia in this population. Because data were either lacking or inconclusive, a task force was established by the International Pediatric Sleep Association (IPSA) to examine the literature based on clinical trials from 2012 onwards. A summary of evidence pertaining to melatonin's utility and potential side effects, practice-related caveats, and insights for use are published herewith.

Depressive symptoms and activity engagement in autistic adolescents and those with other developmental disabilities.

BACKGROUND: Autistic adults and those with other developmental disabilities (DD) have increased depressive symptoms and decreased activity engagement when compared to those with no DD. Few studies explore activities related to depressive symptoms in autistic people and those with other DD during adolescence. OBJECTIVE: The objectives of this analysis were to describe depressive symptoms and activity engagement among autistic adolescents and those with other DD and no DD and explore types of activities associated with depressive symptoms, stratified by study group. METHODS: Parents of adolescents completed a multi-site case-control study of autism and other DD when their child was 2-5 years of age and a follow-up survey when their child was 12-16 years of age. Questions asked about the adolescent's current diagnoses, depressive symptoms (i.e., diagnosis, medication use, or symptoms), and engagement in club, social, sport, vocational, volunteer, and other organized activities. RESULTS: Autistic adolescents (N = 238) and those with other DD (N = 222) were significantly more likely to have depressive symptoms than adolescents with no DD (N = 406), (31.9 %, 30.6 %, and 15.0 % respectively). Lower percentages of autistic adolescents participated in activities than peers with other DD, who had lower percentages than peers with no DD. Participation in sports was associated with lower likelihood of depressive symptoms in all groups. CONCLUSIONS: Autistic adolescents and those with other DD are at increased risk for depressive symptoms and reduced activity engagement. Participation in sports may be especially important for adolescent mental health regardless of disability status. Implications for public health education and intervention are discussed.

Rates of family history of autism and ADHD varies with recruitment approach and socio-economic status.

Family history (FH) of autism and ADHD is not often considered during the recruitment process of developmental studies, despite high recurrence rates. We looked at the rate of autism or ADHD amongst family members of young children (9 to 46 months) in three UK-based samples (N = 1055) recruited using different methods. The rate of FH-autism or FH-ADHD was 3%-9% for diagnosed cases. The rate was highest in the sample recruited through an online participant pool, which also consisted of the most socio-economically diverse families. Lower parental education and family income were associated with higher rates of FH-ADHD and lower parental education with increased FH-autism. Thus, recruitment strategies have a meaningful impact on neurodiversity and the conclusions and generalizations that can be drawn. Specifically, recruitment using crowdsourcing websites could create a sample that is more representative of the wider population, compared to those recruited through university-related volunteer databases and social media.

Pain assessment in autism: updating the ethical and methodological challenges through a state-of-the-art review.

Sensory features of autism include hypo- or hyper-reactivity to pain; however, previous studies on pain in autism lead to conflicting results. Here, we present the state of the art and the methodological challenges concerning pain perception in autism, focusing on studies that used standardized protocol as Quantitative Sensory Testing (QST) to measure perception. Despite there are still scant evidences found with the use of QST, they have challenged the presumed hyposensitivity to pain in autisms, which emerged from parents' reports. Both, peripheral and central mechanisms, have been found involved in typical features of perception in autism. Nonetheless, evidences with controlled protocols are still scarce, and even scarcer are studies focused on children. Overall, complex ethical challenges have to be overcome in order to collect subjective and objective measures from autistic children. With heterogeneous neurodevelopmental features, or intellectual disability, novel or modified protocols are needed.

Predictors of sleep quality for autistic people across adulthood.

Poor sleep can have a significant impact on physical health and well-being. Sleep problems are common among autistic children, but less is known about sleep across the autistic adult lifespan. Autistic adults (n = 730, aged 18-78 years) were recruited via Simons Powering Autism Research for Knowledge Research Match. Participants completed online surveys asking about demographics, health problems, social support, symptoms of anxiety and depression, and overall and specific aspects of sleep quality. Regression analyses explored the variables associated with sleep quality. Physical health, assigned female sex at birth and self-reported anxiety symptoms significantly contributed to models for all aspects of sleep. Perceived stress contributed to models of overall and subjective sleep quality, and daytime dysfunction. Depression symptoms did not contribute significantly to any of the models of sleep quality. However, utilizing government support mechanisms (such as social security) contributed to the model of sleep efficiency. Age contributed little to models of sleep quality, whereas perceived stress and psychotropic medication use contributed to some but not all aspects of sleep. Sleep quality is poor for autistic people across the adult lifespan. Given known impacts of poor sleep on health, cognition and quality of life, attention should be paid to sleep and its possible everyday effects for autistic people of all ages.

Utilising Interview Methodology to Inform the Development of New Clinical Assessment Tools for Anxiety in Autistic Individuals Who Speak Few or no Words.

Autistic individuals with intellectual disability who speak few or no words are at high risk of anxiety but are underrepresented in research. This study aimed to describe the presentation of anxiety in this population and discuss implications for the development of assessments. Interviews were conducted with 21 parents/carers of autistic individuals and nine clinicians. Data were analysed using content analysis and interpretative phenomenological analysis. Anxiety behaviours described by parents/carers included increased vocalisation, avoidance and behaviours that challenge. Changes to routine were highlighted as triggering anxiety. Clinicians discussed the importance of identifying an individual's baseline of behaviour, knowing an individual well and ruling out other forms of distress. This study raises considerations for early identification of anxiety and for subsequent support.

Are adults with autism receiving regular preventive dental services?

PURPOSE/AIM: To investigate the frequency of preventive dental care among adults with autism and explore factors associated with receiving regular preventive care. MATERIALS AND METHODS: De-identified data was collected from electronic health records of 18-year-old or older patients with autism that had at least one preventive dental procedure recorded. The data was then analyzed to describe the frequency of preventive dental procedures provided for this population and investigate what variables are associated with regular care. RESULTS: Sample size was 119, 67% were males, average age was 30.8 years, and 58% had Medicaid. Average BMI was 42.8, the prevalence of diabetes and heart disease were 16% and 34%, respectively, and 86% reported mental health problems. Recreational drug use was 6.8%, alcohol use was 19%, and tobacco use 16%. Xerostomia was reported by 32%, and the average number of medications was 7.2 ± 5.5. The average number of preventive dental visits was 7.9 ± 10.6, and 35% of the patients had at least one preventive dental visit per year. Only number of medications had a statistically significant association with number of preventive dental visits. CONCLUSIONS: Only one in every three adults with autism had at least one preventive dental visit per year.

[Appreciating COVID-19 as a child and adolescent psychiatrist on the move]. / Appréhender le COVID-19 au fil de l'eau en tant que psychiatre d'enfant et d'adolescent.

COVID-19 is a multi-organ disease due to an infection with the SARS-CoV2 virus. It has become a pandemic in early 2020. The disease appears less devastating in children and adolescents. However, stress, quarantine and eventually mourning have major impacts on development. It is difficult to describe what this pandemic implies for a child psychiatrist, other than by giving a first-hand account. I propose to go through the main ethical questions that have arisen; to describe how my hospital team has reorganized itself to meet the new demands and questions, in particular by opening a unit dedicated to people with autism and challenging behaviors affected by COVID-19; and to address, in a context of national discussion, how the discipline has sought to understand the conditions of a certain well-being during quarantine. Finally, I will try to conclude with more speculative reflections on re-opening.

The feasibility of low-intensity psychological therapy for depression co-occurring with autism in adults: The Autism Depression Trial (ADEPT) - a pilot randomised controlled trial.

Low-intensity cognitive behaviour therapy including behavioural activation is an evidence-based treatment for depression, a condition frequently co-occurring with autism. The feasibility of adapting low-intensity cognitive behaviour therapy for depression to meet the needs of autistic adults via a randomised controlled trial was investigated. The adapted intervention (guided self-help) comprised materials for nine individual sessions with a low-intensity psychological therapist. Autistic adults (n = 70) with depression (Patient Health Questionnaire-9 score ⩾10) recruited from National Health Service adult autism services and research cohorts were randomly allocated to guided self-help or treatment as usual. Outcomes at 10-, 16- and 24-weeks post-randomisation were blind to treatment group. Rates of retention in the study differed by treatment group with more participants attending follow-up in the guided self-help group than treatment as usual. The adapted intervention was well-received, 86% (n = 30/35) of participants attended the pre-defined 'dose' of five sessions of treatment and 71% (25/35) attended all treatment sessions. The findings of this pilot randomised controlled trial indicate that low-intensity cognitive behaviour therapy informed by behavioural activation can be successfully adapted to meet the needs of autistic people. Evaluation of the effectiveness of this intervention in a full scale randomised controlled trial is now warranted.

Quantitative gait assessment in children with 16p11.2 syndrome.

BACKGROUND: Neurodevelopmental disorders such as 16p11.2 syndrome are frequently associated with motor impairments including locomotion. The lack of precise measures of gait, combined with the challenges inherent in studying children with neurodevelopmental disorders, hinders quantitative motor assessments. Gait and balance are quantifiable measures that may help to refine the motor phenotype in 16p11.2. The characterization of motor profile is useful to study the trajectories of locomotion performance of children with genetic variants and may provide insights into neural pathway dysfunction based on genotype/phenotype model. METHODS: Thirty-six children (21 probands with 16p11.2 deletion and duplication mutation and 15 unaffected siblings), with a mean age of 8.5 years (range 3.2-15.4) and 55% male, were enrolled. Of the probands, 23% (n = 6) had a confirmed diagnosis of autism spectrum disorder (ASD) and were all male. Gait assessments included 6-min walk test (6MWT), 10-m walk/run test (10MWR), timed-up-and-go test (TUG), and spatio-temporal measurements of preferred- and fast-paced walking. The Pediatric Evaluation of Disability Inventory-Computer Adaptive Tests (PEDI-CAT), a caregiver-reported functional assessment, was administered. Measures of balance were calculated using percent time in double support and base of support. Analyses of the six children with ASD were described separately. RESULTS: Thirty-six participants completed the protocol. Compared with sibling controls, probands had significantly lower scores on the 6MWT (p = 0.04), 10MWR (p = 0.01), and TUG (p = 0.005). Group differences were also identified in base of support (p = 0.003). Probands had significantly lower PEDI-CAT scores in all domains including the mobility scale (p < 0.001). Using age-matched subsamples, the ASD and non-ASD genetic variant groups had larger base of support compared to the controls. In the fast-paced condition, all participants increased their velocity, and there was a corresponding decrease in percent time in double support compared to the preferred-pace condition in all participants. Only the ASD group presented with upper limb arm/hand stereotypies. CONCLUSIONS: Children with 16p11.2, with and without ASD, present with balance impairment during locomotion activities. Probands performed worse on functional assessments, and quantitative measures revealed differences in base of support. These results highlight the importance of using precise measures to differentiate motor dysfunction in children with neurodevelopmental disorders.

'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality.

Autistic people are at high risk of mental health problems, self-injury and suicidality. However, no studies have explored autistic peoples' experiences of treatment and support for these difficulties. In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals' experiences of treatment and support for mental health problems, self-injury and suicidality for the first time. A total of 200 autistic adults (122 females, 77 males and 1 unreported) aged 18-67 (mean = 38.9 years, standard deviation = 11.5), without co-occurring intellectual disability, completed the online survey. Thematic analysis of open-ended questions resulted in an overarching theme that individually tailored treatment and support was both beneficial and desirable, which consisted of three underlying themes: (1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people's well-being and likelihood of seeing suicide as their future. Findings demonstrate an urgent need for autism treatment pathways in mental health services.

"We were on our own": Mothers' experiences navigating the fragmented system of professional care for autism.

Autism is a developmental disorder that emerges in early childhood. Treatments for autism span a wide variety of professionals and paraprofessionals in the medical and educational realms. This article draws on data from a survey of 620 parents of autistic children, including 385 written narratives, to examine the experiences of mothers as they engage with this fragmented system of professional care for children with autism. Findings suggest that engagement with treatments sent families into a complex and confusing universe of diagnosis and treatment. The fragmentation of autism's professional jurisdiction between the medical and educational systems meant that mothers struggled to find comprehensive professional care that met the standards recommended by leading medical research organizations. Many mothers found it necessary to reduce their workforce participation in order to obtain and maintain their children's treatment regimes, a phenomenon that transcended social class. However, the consequences of reducing work had differential impacts on families. While married and high socioeconomic status mothers were more insulated from the potential negative effects of losing one partner's income, single and low SES mothers experienced greater precarity. These findings connect the structure and arrangement of professional jurisdictions to the experiences of parents, suggesting ways that the fragmentation of professional care for autism can have negative impacts for women, single mothers, and low SES families.

Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System.

Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment. Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention. Sources of pain in this population include acute-onset pain attributable to tissue injury or inflammation resulting in nociceptive pain, with pain then expected to resolve after treatment directed at the source. Other sources can result in chronic intermittent pain that, for many, occurs on a weekly to daily basis, commonly attributed to gastroesophageal reflux, spasticity, and hip subluxation. Most challenging are pain sources attributable to the impaired central nervous system, requiring empirical medication trials directed at causes that cannot be identified by diagnostic tests, such as central neuropathic pain. Interventions reviewed include integrative therapies and medications, such as gabapentinoids, tricyclic antidepressants, α-agonists, and opioids. This clinical report aims to address, with evidence-based guidance, the inherent challenges with the goal to improve comfort throughout life in this vulnerable group of children.

Daily living pain assessment in children with autism: Exploratory study.

This study aims to broaden knowledge about pain expression and assessment in daily life situations in children with Autism Spectrum Disorder (ASD). The goals are to provide a description of the responses of the GED-DI, the French version of the NCCPC, and to test the internal structure validity of this scale. Thirty five children with ASD were included in this study (mean age=58months; mean developmental age=32months). The French version of the NCCPC was filled in by parents. Descriptive analysis of responses shows that children with ASD express pain through varied and common behaviours, related to different expressive markers (vocal, facial, activity, etc.). Behaviours more specific to the symptomology and disturbances of ASD are also displayed. A four-factor solution (negative emotional reaction, idiosyncratic expression, hyper-vigilance reaction, pain expression) emerges from an exploratory factor analysis that explains 54.4% of the total variance. Correlation coefficients show good psychometric qualities in terms of internal consistency, factorial validity and discriminant validity. This study provides new data about pain expression in daily life situations and shows that the French version of NCCPC adjusted to ASD children is relevant to assess pain in daily life situations.

Risperidona no comportamento agressivo em adultos com transtornos do espectro do autismo (TEA) / Risperidone in aggressive behavior in adults with autism spectrum disorders (ASD)

Contexto: Em setembro de 2014, após discussões e recomendações da 26ª Reunião da Comissão Nacional de Incorporação de Tecnologias no SUS (Conitec), realizada no dia 9 de junho de 2014, sobre as evidências de eficácia, segurança e aspectos econômicos do uso da risperidona no tratamento de em crianças e adolescentes com transtornos do espectro do autismo (TEA), decidiu-se ampliar o uso da risperidona para o controle da agressividade. Ao se delinear o Protocolo Clínico e Diretrizes Terapêuticas (PCDT) de comportamento agressivo na pessoa com transtornos do espectro do autismo (TEA), observou-se a necessidade de garantir também o acesso de pacientes adultos com TEA ao referido tratamento. Evidências científicas: De maneira geral, as evidências disponíveis demonstram eficácia da risperidona nos domínios relacionados agressividade. Quanto aos demais sintomas estudados, como interesses restritos, interação emocional e comunicação verbal, os estudos convergiram em não demonstrar significância estatística, o que corrobora a não indicação deste medicamento para o tratamento de sintomas nucleares do TEA. A escassez de evidências diretas torna baixa a qualidade das evidências para seu uso em adultos, sendo importante a construção e implementação de um PCDT que selecione os indivíduos com balanço favorável de riscos e benefícios. Impacto orçamentário: A ampliação de cobertura da risperidona para adultos com TEA pode gerar um impacto orçamentário anual próximo de R$ 4 milhões, com uma probabilidade acima de 90% de estar abaixo do menor nível impacto orçamentário ao longo de 3 anos de incorporação. Discussão: Apesar da baixa qualidade das evidências, há grande probabilidade de uma relação causal entre a melhora do comportamento agressivo e o uso da risperidona em adultos com TEA, a partir da plausibilidade biológica e consistência com os resultados em crianças e adolescentes. Da mesma forma, os dados econômicos apresentam a referida ampliação de uso da risperidona como uma incorporação de não elevado impacto orçamentário. Decisão: Incorporar o uso da risperidona no tratamento do comportamento agressivo em adultos com transtorno do espectro do autismo (TEA), no âmbito do Sistema Único de Saúde ­ SUS, dada pela Portaria SCTIE-MS nº 2, de 18 de janeiro de 2016, publicada no Diário Oficial da União nº 11 de 18 de janeiro de 2016.

Dental Homes for Children With Autism: A Longitudinal Analysis of Iowa Medicaid's I-Smile Program.

INTRODUCTION: Medicaid-enrolled children with autism spectrum disorder (ASD) encounter significant barriers to dental care. Iowa's I-Smile Program was implemented in 2006 to improve dental use for all children in Medicaid. This study compared dental home and preventive dental utilization rates for Medicaid-enrolled children by ASD status and within three time periods (pre-implementation, initial implementation, maturation) and determined I-Smile's longitudinal influence on ASD-related dental use disparities. METHODS: Data from 2002-2011 were analyzed for newly Medicaid-enrolled children aged 3-17 years (N=30,059); identified each child's ASD status; and assessed whether the child had a dental home or utilized preventive dental care. Log-linear regression models were used to generate rate ratios. Analyses were conducted in 2015. RESULTS: In 2003-2011, 9.8% of children with ASD had dental homes compared with 8% of children without ASD; 36.3% of children with ASD utilized preventive care compared to 45.7% of children without ASD. There were no significant differences in dental home rates by ASD status during pre-implementation, initial implementation, or maturation. There were no significant differences in preventive dental utilization by ASD status during pre-implementation or initial implementation, but children with ASD were significantly less likely to utilize preventive care during maturation (rate ratio=0.79, p<0.001). Longitudinal trends in dental home and preventive dental utilization rates were not significant (p=0.54 and p=0.71, respectively). CONCLUSIONS: Among newly Medicaid-enrolled children in Iowa's I-Smile Program, those with ASDs were not less likely than those without ASD to have dental homes but were significantly less likely to utilize preventive dental care.

Assessment and treatment of pica and destruction of holiday decorations.

Problem behavior exhibited by individuals with autism can be disruptive to family traditions, such as decorating for the holidays. We present data for a 6-year-old girl who engaged in automatically reinforced pica and destruction of holiday decorations. Treatment was evaluated within an ABCDCD reversal design. During baseline (Phases A and B), we observed elevated rates of problem behavior. We implemented differential reinforcement of alternative behavior in Phase C to teach a response to compete with problem behavior. Little change in toy play or problem behavior occurred. In Phase D, we added a facial screen to the differential reinforcement procedures, which resulted in increases in toy play and decreases in problem behavior. Findings are discussed in terms of how interventions for problem behavior can promote alternative behavior while they facilitate household activities and traditions.

Treatment for Sleep Problems in Children with Autism and Caregiver Spillover Effects.

Sleep problems in children with autism spectrum disorders (ASD) are under-recognized and under-treated. Identifying treatment value accounting for health effects on family members (spillovers) could improve the perceived cost-effectiveness of interventions to improve child sleep habits. A prospective cohort study (N = 224) was conducted with registry and postal survey data completed by the primary caregiver. We calculated quality of life outcomes for the child and the primary caregiver associated with treatments to improve sleep in the child based on prior clinical trials. Predicted treatment effects for melatonin and behavioral interventions were similar in magnitude for the child and for the caregiver. Accounting for caregiver spillover effects associated with treatments for the child with ASD increases treatment benefits and improves cost-effectiveness profiles.