Patricia Howlin

King's College London | KCL · Department of Psychology

Disordered sleep is common in autistic children. This study aimed to evaluate the cost-effectiveness of a brief behavioural sleep intervention, the ‘Sleeping Sound intervention’, in primary school-aged autistic children in Australia. A cost-effectiveness analysis was undertaken alongside a randomised controlled trial over a 6-month follow-up period...

We investigated autistic children’s generalisation of social communication over time across three settings during a play-based assessment with different adults and explore the potential moderating effects on generalisation of age, nonverbal IQ and level of restricted and repetitive behaviours. The social communication abilities of 248 autistic chil...

The interactions between sleep problems, autism symptoms and emotional and behavioural difficulties were explored using network analysis in 240 autistic children (mean age: 8.8 years, range 5–13 years) with moderate to severe sleep problems. Findings revealed a highly connected and interpretable network, with three separate clusters identified of t...

Background: Although autism is commonly described in terms of deficits, many autistic individuals have been found to demonstrate exceptional skills. The shift to a strengths-based approach in the field of autism necessitates increased understanding of these skills. Aims: This study examined (1) rates of exceptional skills in autistic school-age...

Background There are very few mechanistic studies of the long‐term impact of psychosocial interventions in childhood. The parent‐mediated Paediatric Autism Communication Therapy (PACT) RCT showed sustained effects on autistic child outcomes from pre‐school to mid‐childhood. We investigated the mechanism by which the PACT intervention achieved these...

Background: Forty five percent of children with Autism Spectrum Disorder (ASD) show no additional language or intellectual disabilities and attend mainstream schools, yet their long-term outcomes are poor (Baird et al., 2006). Poorer quality of life in older autistic adults (Roestorf, 2018) has been associated with difficulties with theory of mind...

Background: Training parents to engage in elaborative reminiscing (ER) with their typically developing children has been found to significantly improve outcomes for typically developing children. Studies have reported significant benefits of ER for improving children’s memory (Waters et al., 2019, Wu & Jobson, 2019) and associations between ER and...

This study examined the sustained and moderating effects of a behavioural sleep intervention for autistic children in a randomised controlled trial. Autistic children (5–13 years) with sleep problems were randomised to the Sleeping Sound intervention or Treatment as Usual (TAU). At 12-month follow-up (n = 150), caregivers of children in the Sleepin...

Lay abstract: Many early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of ther...

Background Poor mental health is known to adversely affect functional abilities, social isolation, and quality of life (QoL). It is, therefore, crucial to consider the long-term impacts of mental health conditions as autistic adults grow older. Objectives To explore, in a group of community-based autistic adults, the extent of: (i) autistic traits...

Previous studies have suggested that autistic adults may be negatively affected by the COVID‐19 pandemic and its associated restrictions. In this study, we examined continuity and change in loneliness and stress, and their predictors, in 448 autistic and 70 non‐autistic adults living in the Netherlands. Autistic participants were assessed on three...

Previous research has indicated that autistic adults experience higher rates of co‐occurring mental health difficulties and poorer quality of life (QoL) than their non‐autistic peers. Little is known, however, about these aspects in older age or whether younger and older autistic adults experience similar patterns This cross‐sectional study investi...

Background: Poor mental health is known to adversely affect functional abilities, social isolation and quality of life (QoL). It is, therefore, crucial to consider the long-term impacts of mental health conditions as autistic adults grow older. Objectives: To explore, in a group of community-based autistic adults, the extent of: (i) autistic traits...

Background: Research suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employme...

Background Prior evidence suggests that behaviours closely related to the intervention delivered for autism are amenable to change, but it becomes more difficult when generalising treatment effects beyond that immediate context. Objectives The objectives were (1) to test an early autism social communication intervention designed to promote child s...

Background Autistic children can have difficulty generalising treatment effects beyond the immediate treatment context. Paediatric Autism Communication Therapy (PACT) has been successful when delivered in the clinic. Here we tested the Paediatric Autism Communication Therapy-Generalised (PACT-G) intervention combined between home and education sett...

Background Behavioural sleep problems are common in children with autism spectrum disorder (ASD); however, evidence for the efficacy of behavioural sleep interventions is limited. This study examined the efficacy of a brief behavioural sleep intervention in autistic children. It was hypothesised that the intervention would reduce overall child slee...

Background: Poor mental health is known to adversely affect functional abilities, social isolation and quality of life (QoL). It is, therefore, crucial to consider the long-term impacts of mental health conditions as autistic adults grow older. Objectives: To explore the extent of: (i) autistic traits, co-occurring physical and mental health condit...

Although good quality housing and a socially cohesive neighborhood are associated with a higher well-being in the general population, housing is a rarely studied topic in autism research. In the present study, we describe the housing situation of a large sample of adults with autism and mostly (above) average intellectual abilities (n = 1429; 17 to...

Over the past four decades there have been significant advances in our understanding of autism, yet services for autistic adults continue to lag far behind those for children, and prospects for employment and independent living remain poor. Adult outcomes also vary widely and while cognitive and language abilities are important prognostic indicator...

Longitudinal studies have generally reported poor outcomes in adulthood for the majority of individuals (c.50–60%) with autism. Several factors putatively predict outcome (e.g. IQ), but findings remain mixed. This paper presents an updated meta-analysis of autism outcome studies and extends previous findings with additional analyses (including meta...

Background: Poor mental health is known to adversely affect functional abilities, social isolation and quality of life (QoL). It is, therefore, crucial to consider the long-term impacts of mental health conditions as autistic adults grow older. Objectives: Our objectives were to understand the extent of: (i) autistic traits, co-occurring physical a...

Lay abstract: Requests for diagnoses of pathological demand avoidance have increased over recent years, but pathological demand avoidance remains a controversial issue. The concept of pathological demand avoidance has been criticised for undermining the self-advocacy of autistic people and neglecting the potential role of anxiety as a possible und...

This study investigated whether sleep problem severity in children with autism spectrum disorder was associated with maternal well-being. Mothers of 234 children reported on their mental health (Kessler Psychological Distress Scale), parenting stress (Parenting Stress Index-4-SF), health-related quality of life (HRQoL; Assessment of Quality of Life...

Lay abstract: Previous research has shown that relatively few adults with autism have a paid job or live on their own. However, outcomes also vary a lot and may depend on many different factors. In this study, we examined the level of functioning and happiness of 917 adults with autism (425 men and 492 women) aged 18-65 years. Most of them were of...

Across Europe, there is increased awareness of the frequency and importance of autism spectrum disorder (ASD), which is now recognised not only as a childhood disorder but as a heterogeneous, neurodevelopmental condition that persists throughout life. Services for individuals with autism and their families vary widely, but in most European countrie...

Background: Sleep problems are common in many neurodevelopmental disorders, but little is known about how sleep is related to behavioural symptoms in Angelman syndrome (AS) or other genetic disorders. Hyperactive behaviour, sleep problems and epilepsy seem to be more common in AS than in other genetic conditions associated with severe intellectual...

This RCT investigated whether participants’ sibling configuration moderated the effect of a Theory of Mind (ToM) intervention for children with autism. Children with autism aged 8–13 years (n = 141) were randomized over a waitlist control or treatment condition. Both having more siblings, as well as having an older sibling were related to better ou...

Extreme demand avoidance (EDA) is increasingly described as part of the autism spectrum and is sometimes diagnosed as Pathological Demand Avoidance (PDA). Yet little is known, about the educational experiences of children with and without EDA behaviours. Using an online survey collecting both quantitative and qualitative data, 211 parents reported...

Background: Williams syndrome anxiety research predominantly focuses on disorder prevalence and symptomatology, categorised using standardised mental health classifications. However, the use of these assessments may not fully capture the phenotypic features of anxiety in Williams syndrome. In this study, we examined characteristics of anxiety usin...

Background: The identification and treatment of psychiatric disorders in individuals with autism spectrum disorders (ASD) and ID presents many challenges. We describe the development of a professional network, together with a standardized protocol for clinical assessment, designed to promote clinical competence and professional development in eight...

Impaired social cognition has been suggested to underlie the social communication difficulties that define autism spectrum disorder (ASD). In typical development, social cognition may deteriorate in older age, but age effects in ASD adults have been little explored. In the present study, we compared groups of younger and older adults with and witho...

Previous research in clinical, community, and school settings has demonstrated positive outcomes for the Secret Agent Society (SAS) social skills training program. This is designed to help children on the autism spectrum become more aware of emotions in themselves and others and to ‘problem-solve’ complex social scenarios. Parents play a key role i...

Psychopathology is prevalent in Williams (WS), fragile X (FXS) and Prader–Willi (PWS) syndromes. However, little is known about the potential correlates of psychopathology in these groups. A questionnaire study was completed by 111 caregivers of individuals with WS (n = 35); FXS (n = 50) and PWS (n = 26). Mean age was 26 years (range 12–57 years);...

Researchers have generally considered autistic individuals to have difficulties generalising learned skills across novel contexts. Successful generalisation is necessary for an intervention to have benefits in everyday life beyond the original learning environment. We conducted a systematic review of randomised controlled trials of early social com...

We investigated the early sociocognitive battery (ESB), a novel measure of preverbal social communication skills, in children with autism participating in the Paediatric Autism Communication Trial-Generalised (PACT-G). The associations between ESB scores, language and autism symptoms were assessed in 249 children aged 2–11 years. The results show t...

Introduction Sleep problems are a characteristic feature of children with autism spectrum disorder (ASD) with 40% to 80% of children experiencing sleep difficulties. Sleep problems have been found to have a pervasive impact on a child’s socio-emotional functioning, as well as on parents’ psychological functioning. The Sleeping Sound ASD project aim...

Background Most studies of siblings of individuals with autism have involved children or adolescents. In the present study we explored the experiences of adults with a brother or sister with autism. Method As part of a larger scale, adult sibling study, 56 individuals (37 females, 19 males; mean age 40 years) were asked about their experiences of...

The EarlyBird programme is a group-based psychoeducation intervention for parents of young children with autism. Although it is widely used in the United Kingdom, the evidence base for the programme is very limited. Using a mixed method, non-randomised research design, we aimed to test (1) the acceptability of the research procedures (recruitment,...

The requirement for educational provision for all children to be evidence based has been highlighted in many government policies.1 The significant additional costs of educating children with autism, and difficulties in recruiting adequately trained teachers, have placed increasing pressure on education authorities to provide more cost-effective ins...

A special interest group (SIG) entitled "Older Adults with ASD: The Consequences of Aging" was held at the International Society for Autism Research (INSAR) annual meetings in 2016 and 2017. The SIG and subsequent meetings brought together, for the first time, international delegates who were members of the autistic community, researchers, practiti...

Purpose of review: Since the last review of Williams syndrome in Current Opinion (2001) there have been many advances in knowledge about the cognitive, social and psychological impairments that characterize the disorder. The present review focuses on current research in these areas. Recent findings: Williams syndrome is associated with a wide ra...

Autism and Pervasive Developmental Disorders - edited by Fred R. Volkmar January 2019

Cambridge Core - Psychiatry - Autism and Pervasive Developmental Disorders - edited by Fred R. Volkmar

Background: Prior evidence shows that behaviours closely related to the intervention delivered for autism are amenable to change, but it is more difficult to generalise treatment effects beyond the intervention context. We test an early autism intervention designed to promote generalisation of therapy-acquired skills into home and school contexts...

It is well documented that mothers of children with challenging behavior (CB) experience elevated levels of stress and that this persists over time, but less is known about the experience of mothers of children with rare genetic syndromes. This article describes 2 studies, 1 cross-sectional and 1 longitudinal, comparing well-being in mothers of chi...

We examined predictors of mental health difficulties and wellbeing in caregivers of children with autism in the Pre-school Autism Communication Trial cohort in middle childhood (N = 104). Child’s intellectual disability, daily living skills impairment, elevated emotional and behavioural difficulties, high educational level of caregiver and househol...

Background and aims Despite recent gains in the amount and quality of early autism intervention research, identifying what works for whom remains an ongoing challenge. Exploiting data from the Preschool Autism Communication Trial (PACT), we undertook secondary analysis to explore prognostic indicators and predictors of response to one year of PACT...

Abstract Background Autism spectrum disorder and epilepsy often co-occur; however, the extent to which the association between autism symptoms and epilepsy is due to shared aetiology or to the direct effects of seizures is a topic of ongoing debate. Angelman syndrome (AS) is presented as a suitable disease model to explore this association. Methods...

Individuals with specific genetic syndromes associated with intellectual disability (ID), such as Williams syndrome (WS), are at increased risk for developing anxiety disorders. A systematic literature review identified sixteen WS papers that could generate pooled prevalence estimates of anxiety disorders for WS. A meta-analysis compared these esti...

Background: The Strengths and Difficulties Questionnaire (SDQ) is widely used to measure emotional and behavioural problems in typically developing young people, although there is some evidence that it may also be suitable for children with intellectual disability (ID). The Developmental Behaviour Checklist - Parent version (DBC-P) is a measure of...

This study describes the profile of repetitive behaviour in individuals with Williams syndrome, utilising cross-syndrome comparisons with people with Prader–Willi and Down syndromes. The Repetitive Behaviour Questionnaire was administered to caregivers of adults with Williams (n = 96), Prader–Willi (n = 103) and Down (n = 78) syndromes. There were...

Empirically based, consumer-informed programming to support students with Autism Spectrum Disorder (ASD) transitioning to college is needed. Informed by theory and research, the Stepped Transition in Education Program for Students with ASD (STEPS) was developed to address this need. The first level (Step 1) supports high school students and the sec...

Background: Service responses to behaviour phenotypes include care by expert clinicians, syndrome-specific clinics, disability-specific mental health services and generic mental health services. While these services contribute to care, they are often of limited accessibility. Methods: We describe a population-wide public health intervention aime...

Background: The Secret Agent Society (SAS) Program, an intervention to enhance social–emotional skills, was provided by schools for children with autism spectrum disorder (ASD). The program was assessed to determine if it improved social skills at school and home, and whether improvements were maintained. Methods: Eighty-four students participated....

Background Is the increasing prevalence of autistic disorder (AD) a well-documented trend or merely a reflection of the wider recognition of AD among both the public at large and health care professionals? Data from relevant studies are frequently compromised by comparisons of different sites and different diagnostic methods. Objectives To explore...

This RCT investigated whether the effect of a Theory of Mind (ToM) intervention for children with ASD was moderated by parental education level and employment, family structure, and parental ASD. Children with autism aged 8-13 years (n = 136) were randomized over a waitlist control or treatment condition. At posttest, children in the treatment cond...

The WHO Quality of Life-Brief questionnaire was used to assess quality of life (QoL) among 52 adults with autism (mean age 49 years) followed-up since childhood. Overall, assessments of QOL were more positive than measures of objective social outcome (jobs, independence, relationships etc.) but correlations between caregiver and self-reports were l...

The processes of arrest, investigation, trial and imprisonment are often extremely difficult for individuals with autism spectrum disorders. In this study, nine offenders with autism spectrum disorders were interviewed about the circumstance surrounding the criminal acts, their views of the arrest, the police interrogation, the trial and the defenc...

Purpose of review: Until recently, there has been little systematic study of adult life among individuals with autism spectrum disorder (ASD) but recognition of the high psychological and social costs of ASD has led to an increase in adult-focused research over the past decade. The aim of this review is to summarize recent empirical findings on ou...

Background: Recent studies have indicated an increased risk of autism, behavioural and emotional problems and attention-deficit/hyperactivity disorder in individuals with Down syndrome. Method: In a large-scale survey-based study, we examined the rates of these problems and their relationship to age and gender, in a sample of 674 individuals (4-...

Background: Recent research suggests that around 16% to 18% of children with Down syndrome (DS) also meet diagnostic criteria for autism spectrum disorder (ASD). However, there are indications that profiles of autism symptoms in this group may vary from those typically described in children with ASD. Method: Rates of autism symptoms and emotiona...

Background: It is not known whether early intervention can improve long-term autism symptom outcomes. We aimed to follow-up the Preschool Autism Communication Trial (PACT), to investigate whether the PACT intervention had a long-term effect on autism symptoms and continued effects on parent and child social interaction. Methods: PACT was a rando...

Young people with autism spectrum disorder (ASD) have a high prevalence (~40 %) of anxiety disorders compared to their non-ASD peers. It is unclear whether cognitive and biological processes associated with anxiety in ASD are analogous to anxiety in typically developing (TD) populations. In this study 55 boys with ASD (34 with a co-occurring anxiet...

Background: There is a growing call for empirically based programming to support the success of students with autism spectrum disorder (ASD) as they transition to college. Aims: The purpose of this study was to identify the needs and challenges faced by adolescents and young adults with ASD in postsecondary education. Methods: A mixed methods...

Aim: The assessment of anxiety in Williams syndrome (WS) typically relies on the use of established psychiatric tools. These measures, designed for the general population, may miss important markers of anxiety associated with the WS behavioural phenotype. This study examines the profile of anxiety in WS. Method: A meta-analysis was conducted in acc...

The relationship between dissociable components of autobiographical memory (e.g. semantic personality traits and episodic memory retrieval) and other cognitive skills that are proposed to enable one to develop a sense of self (e.g. introspection) have not previously been explored for children with autism spectrum disorder. This study compared autob...

Background: Formal IQ tests are an important part of the diagnostic and needs-based assessment process for children with neurodevelopmental disorders. However, resources for such assessments are not always available. It has been suggested that parental estimates of their child's developmental age could serve as a proxy IQ when formal measures are...

In the present study we examined the nature and developmental trajectory of self-injurious behaviour in Prader Willi syndrome (PWS) and autism spectrum disorder (ASD). The development of interventions is greatly aided by understanding gene to behaviour pathways, and this requires an accurate description of the behaviour phenotype, that is, which ty...

Although thousands of research studies have been published relating to the diagnosis, assessment, development, and treatment of children with autism spectrum disorder (ASD), only a very small number have focused on long-term developmental trajectories and outcomes in adulthood. This chapter focuses on what is known about adult outcomes in terms of...

Background Autism is associated with impairments that have life-time consequences for diagnosed individuals and a substantial impact on families. There is growing interest in early interventions for children with autism, yet despite the substantial economic burden, there is little evidence of the cost-effectiveness of such interventions with which...

Significant changes have occurred in the field of autism, now referred to as Autism Spectrum Disorder (ASD). Despite what we have learned about autism in the past 30 years, the medical community still has more to uncover. Scientists from the fields of neuroimaging, genetics, epidemiology, cognitive neuroscience, and immunology have all joined toget...