Publications by authors named "Patricia Howlin"

87 Publications

Objective and subjective psychosocial outcomes in adults with autism spectrum disorder: A 6-year longitudinal study.

Autism 2021 Jun 25:13623613211027673. Epub 2021 Jun 25.

VU University Amsterdam, The Netherlands.

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 average to high intellectual ability. Over 6 years, we measured whether they had a paid job, close friendships and lived on their own (i.e. their objective functioning). We also measured how happy they felt. Objectively, most autistic adults did fairly to very well. Those with better objective outcomes (e.g. those with paid work) also tended to be happier. Most adults improved in objective functioning and happiness over 6 years. Participants with a lower intellectual ability, more autism traits, mental health problems and younger age had poorer objective outcomes. Participants with more autism traits and mental health problems were less happy. Autistic men and women functioned at similar levels and were equally happy. We found important factors that predict a better (or worse) outcome for autistic adults. Overall, compared with some previous research, our findings give a more positive picture of the outcomes for autistic adults with average to high intellectual abilities.
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http://dx.doi.org/10.1177/13623613211027673DOI Listing
June 2021

Anxiety characteristics in individuals with Williams syndrome.

J Appl Res Intellect Disabil 2021 Jul 9;34(4):1098-1107. Epub 2021 Feb 9.

University of Birmingham, Birmingham, UK.

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 using a formulation framework.

Method: A semi-structured interview was conducted with thirteen parents of individuals with Williams syndrome (median age: 19, age range: 12-45, 8 females).

Results: Various anxiety triggers were reported, including anxiety triggered by phobias, uncertainty and negative emotions in others. The range of described behaviours was diverse with both avoidant and active coping strategies for anxiety management reported.

Conclusions: Many of the characteristics described were consistent with findings in the intellectual disability and typically developing literature, although novel information was identified. The study demonstrates the utility of a formulation framework to explore anxiety characteristics in atypical populations and has outlined new avenues for research.
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http://dx.doi.org/10.1111/jar.12864DOI Listing
July 2021

Adults with Autism: Changes in Understanding Since DSM-111.

Authors:
Patricia Howlin

J Autism Dev Disord 2021 Jan 20. Epub 2021 Jan 20.

Institute of Psychiatry, Psychology and Neuroscience, King's College, London, UK.

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 indicators, the influence of social, emotional, familial and many other factors remains uncertain. For this special issue marking the 40th anniversary of DSM-III, the present paper describes the changing perspectives of autism in adulthood that have occurred over this period, explores individual and wider environmental factors related to outcome, and suggests ways in which services need to be changed to improve the future for adults living with autism.
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http://dx.doi.org/10.1007/s10803-020-04847-zDOI Listing
January 2021

A Meta-analysis of Outcome Studies of Autistic Adults: Quantifying Effect Size, Quality, and Meta-regression.

J Autism Dev Disord 2020 Nov 17. Epub 2020 Nov 17.

Social, Genetic, and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King's College London, De Crespigny Park, Denmark Hill, London, SE5 8AF, UK.

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-regression). A total of 4088 records was screened and 18 studies, involving 1199 individuals, were included in the quantitative analysis. Estimated percentages indicated that 20.0% of participants were rated as having a good outcome, 26.6% a fair outcome, and 49.3% a poor outcome. Meta-regression indicated that lower IQ in adulthood was predictive of poor outcome; other meta-regression models did not survive correction for multiple comparisons. Overall, outcomes for autistic people are on average poor, and higher IQ appears to be protective against having a poor outcome. The limitations of current constructs of outcome are discussed.
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http://dx.doi.org/10.1007/s10803-020-04763-2DOI Listing
November 2020

Age-Related Effects on Social Cognition in Adults with Autism Spectrum Disorder: A Possible Protective Effect on Theory of Mind.

Autism Res 2021 05 16;14(5):911-920. Epub 2020 Oct 16.

Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.

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 without ASD (n = 97), who completed a set of social cognition tasks assessing theory of mind (ToM), and self-report measures of empathy and alexithymia. While typically developing (TD) younger adults outperformed elderly TD and younger ASD participants, younger and older ASD adults did not differ in their ToM performance, and the elderly ASD and TD groups performed equivalently. By contrast, ASD adults reported lower empathy scores and higher levels of alexithymia symptoms compared to TD adults regardless of age. The difference between ASD and TD groups in self-reported empathy scores was no longer significant when alexithymia was covaried (with the exception of the Perspective Taking subscore). Results suggest a possible age-protective effect on ToM in the ASD group. In addition, empathy difficulties appear to be associated with alexithymia rather than ASD per se. Possible interpretations are discussed, and future directions for autism aging research are proposed. LAY SUMMARY: People with autism spectrum disorder (ASD) have difficulties with social understanding. Some age-related studies in typical development have shown a decline in social understanding in older age. We investigated whether a similar pattern is present in adults with ASD. We found that understanding what someone is thinking was not worse in older versus younger autistic adults. Also, we reported further evidence suggesting that emotional empathy difficulties were related to difficulties with understanding one's own emotions rather than with autism itself. Autism Res 2021, 14: 911-920. © 2020 International Society for Autism Research and Wiley Periodicals LLC.
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http://dx.doi.org/10.1002/aur.2410DOI Listing
May 2021

Associations Between Child Sleep Problem Severity and Maternal Well-Being in Children with Autism Spectrum Disorder.

J Autism Dev Disord 2021 Jul;51(7):2500-2510

Deakin Child Study Centre, School of Psychology, Deakin University, Geelong, VIC, Australia.

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-4D) and their child's sleep (Children's Sleep Habits Questionnaire-ASD). Analyses revealed sleep initiation and duration problem severity scores were associated with increased mental health difficulties. Specific child sleep problems were not associated with parenting stress or HRQoL. This study revealed the importance of considering sleep and the family system when assessing maternal well-being. Future research considering parent, child and family factors will be important to informing a family focused approach to mental health.
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http://dx.doi.org/10.1007/s10803-020-04726-7DOI Listing
July 2021

Sibling Configuration as a Moderator of the Effectiveness of a Theory of Mind Training in Children with Autism: a Randomized Controlled Trial.

J Autism Dev Disord 2021 May;51(5):1719-1728

Section Clinical Developmental Psychology, Vrije Universiteit Amsterdam, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands.

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 outcomes on measures of ToM-related behavior and social cognition, but not ToM knowledge or autistic features in general. The finding that these associations were limited to practical skills addressed in the intervention, seems to indicate that having more siblings and having an older sibling provides enhanced opportunities for children with autism to practice taught skills in the home environment.
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http://dx.doi.org/10.1007/s10803-020-04649-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8084814PMC
May 2021

ESCAP practice guidance for autism: a summary of evidence-based recommendations for diagnosis and treatment.

Eur Child Adolesc Psychiatry 2021 Jun 14;30(6):961-984. Epub 2020 Jul 14.

Emeritus Professor of Clinical Child Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College, London, UK.

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 countries, provision is limited. In 2018, European Society of Child and Adolescent Psychiatry (ESCAP) identified the need for a Practice Guidance document that would help to improve knowledge and practice, especially for individuals in underserviced areas. The present document, prepared by the ASD Working Party and endorsed by the ESCAP Board on October 3, 2019, summarises current information on autism and focuses on ways of detecting, diagnosing, and treating this condition.
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http://dx.doi.org/10.1007/s00787-020-01587-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8140956PMC
June 2021

Beyond intervention into daily life: A systematic review of generalisation following social communication interventions for young children with autism.

Autism Res 2020 04 14;13(4):506-522. Epub 2020 Jan 14.

Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.

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 communication interventions for children with autism in order to explore generalisation and its measurement. We identified nine RCTs that provided evidence of initial target learning and measured generalisation, of which eight demonstrated at least some successful generalisation across people, settings, and/or activities. The findings did not support the widely reported generalisation 'difficulties' associated with autism. However, generalisation was not consistent across all skills within studies, and one study found no generalisation despite evidence for initial target learning within the intervention context. In general, there are few methodologically sound social communication intervention studies exploring generalisation in autism and no consensus on how it should be measured. In particular, failure to demonstrate initial learning of target skills within the intervention setting and an absence of formal mediation analyses of the hypothesised mechanisms limit current research. We outline a framework within which measurement of generalisation can be considered for use in future trials. To maximise the effectiveness of interventions, the field needs to gain a better understanding of the nature of generalisation among autistic individuals and what additional strategies may further enhance learning. Autism Res 2020, 13: 506-522. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc. LAY SUMMARY: It is generally considered that autistic individuals experience difficulties applying things they have learned in one context into different settings (e.g. from school to home). This is important to consider for intervention studies. Our review does not support a complete lack of generalisation but instead suggests that after early social communication intervention, autistic children can transfer some skills to new contexts. Overall, there is limited research in this area and further work is needed.
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http://dx.doi.org/10.1002/aur.2264DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7187421PMC
April 2020

Brief Report: Associations Between Preverbal Social Communication Skills, Language and Symptom Severity in Children with Autism: An Investigation Using the Early Sociocognitive Battery.

J Autism Dev Disord 2020 Apr;50(4):1434-1442

Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK.

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 that ESB subscale scores (social responsiveness, joint attention and symbolic comprehension) were significantly associated with concurrent autism symptoms and receptive and expressive language levels. The pattern of association between the ESB subscale scores differed between the ADOS-2 symptom domains and expressive and receptive language. These findings indicate the potential utility of the ESB as a measure of preverbal social communication in children with autism.
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http://dx.doi.org/10.1007/s10803-020-04364-zDOI Listing
April 2020

Sleeping sound with autism spectrum disorder (ASD): study protocol for an efficacy randomised controlled trial of a tailored brief behavioural sleep intervention for ASD.

BMJ Open 2019 11 19;9(11):e029767. Epub 2019 Nov 19.

Deakin University, Geelong, Victoria, Australia.

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 project aims to evaluate the efficacy of a brief behavioural sleep intervention in reducing ASD children's sleep problems in a fully powered randomised controlled trial (RCT). Intervention impact on child and family functioning is also assessed.

Methods And Analysis: The RCT aims to recruit 234 children with a diagnosis of ASD, aged 5-13 years, who experience moderate to severe sleep problems. Participants are recruited from paediatrician clinics in Victoria, Australia, and via social media. Families interested in the study are screened for eligibility via phone, and then asked to complete a baseline survey online, assessing child sleep problems, and child and family functioning. Participants are then randomised to the intervention group or treatment as usual comparator group. Families in the intervention group attend two face-to-face sessions and a follow-up phone call with a trained clinician, where families are provided with individually tailored behavioural sleep strategies to help manage the child's sleep problems. Teacher reports of sleep, behavioural and social functioning are collected, and cognitive ability assessed to provide measures blind to treatment group. The primary outcome is children's sleep problems as measured by the Children's Sleep Habits Questionnaire at 3 months post-randomisation. Secondary outcomes include parent and child quality of life; child social, emotional, behavioural and cognitive functioning; and parenting stress and parent mental health. Cost-effectiveness of the intervention is also evaluated.

Ethics And Dissemination: Findings from this study will be published in peer-reviewed journals and disseminated at national and international conferences, local networks and online.

Trial Registration Number: ISRCTN14077107 (ISRCTN registry dated on 3 March 2017).
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http://dx.doi.org/10.1136/bmjopen-2019-029767DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6887021PMC
November 2019

Feasibility study of the National Autistic Society EarlyBird parent support programme.

Autism 2020 01 5;24(1):147-159. Epub 2019 Jun 5.

King's College London, UK.

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, retention, suitability of measures), (2) the parental acceptability of EarlyBird (attendance, views of the programme, perceived changes) and (3) the facilitator acceptability of EarlyBird (fidelity, views of the programme, perceived changes). Seventeen families with a 2- to 5-year-old autistic child and 10 EarlyBird facilitators took part. Pre- and post-intervention assessment included measures of the child's autism characteristics, cognitive ability, adaptive behaviour, emotional and behavioural problems and parent-reported autism knowledge, parenting competence, stress and wellbeing. Semi-structured interviews were completed at post-intervention with parents and facilitators. For those involved in the study, the research procedures were generally acceptable, retention rates were high and the research protocol was administered as planned. Generally, positive views of the intervention were expressed by parents and facilitators. Although the uncontrolled, within-participant design does not allow us to test for efficacy, change in several outcome measures from pre- to post-intervention was in the expected direction. Difficulties were encountered with recruitment (opt-in to the groups was ~56% and opt-in to the research was 63%), and strategies to enhance recruitment need to be built into any future trial. These findings should be used to inform protocols for pragmatic, controlled trials of EarlyBird and other group-based interventions for parents with young autistic children.
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http://dx.doi.org/10.1177/1362361319851422DOI Listing
January 2020

Editorial: What Constitutes "Evidence-Based" Educational Practice?

Authors:
Patricia Howlin

J Am Acad Child Adolesc Psychiatry 2020 03 22;59(3):344-345. Epub 2019 May 22.

The Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK. Electronic address:

The requirement for educational provision for all children to be evidence based has been highlighted in many government policies. 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 instruction methods for pupils with autism. Computer-assisted interventions (CAI) have been suggested as a possible means of meeting the educational needs of this group, and findings from mostly small, uncontrolled studies have indicated positive improvements in areas such as academic ability, social and communication skills, and adaptive behavior. The present study by Pellecchia et al. describes an evaluation of one such program: TeachTown: Basics. This is a computer-assisted intervention that aims to increase students' vocabulary, listening skills, socio-emotional development, and academic and cognitive abilities. It is designed for children with autism or other developmental disabilities with a nonverbal mental age equivalent of 2 to 7 years. A brief (20 minutes per day for 3 months), small-scale (n = 22, children 3-6-years of age), randomized control trial (RCT) of TeachTown: Basics, previously conducted in the Los Angeles Unified School District, produced some positive but generally nonsignificant changes in language and cognitive measures compared with a control group. Although the authors themselves were cautious about the results, this very limited evidence from a single RCT was enough for the School District of Philadelphia (the eighth largest district in the country) to decide to roll out the program to students in all of its kindergarten to second grade autism support classrooms.
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http://dx.doi.org/10.1016/j.jaac.2019.05.013DOI Listing
March 2020

Williams syndrome: recent advances in our understanding of cognitive, social and psychological functioning.

Curr Opin Psychiatry 2019 03;32(2):60-66

Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.

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 range of cognitive, linguistic, social and other difficulties. When young, these deficits may appear relatively mild - for example, many children are highly sociable and talkative - but with age the impact of these difficulties becomes more evident. Thus, inappropriate social behaviours can significantly increase the risk of social exclusion and vulnerability to abuse. Their superficially good speech can lead to educational and other services failing to understand the true extent of impairments or the need for specialist support. Mental health problems, especially related to anxiety, often become an increasing challenge from adolescence onwards.

Summary: The core difficulties associated with Williams syndrome have a cascading effect on many areas of development over time. However, specialist provision is rare and intervention trials are almost nonexistent. Longitudinal research is needed to identify factors associated with cognitive, social and emotional problems and to develop more effective ways of minimizing and treating difficulties.
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http://dx.doi.org/10.1097/YCO.0000000000000477DOI Listing
March 2019

Paediatric Autism Communication Therapy-Generalised (PACT-G) against treatment as usual for reducing symptom severity in young children with autism spectrum disorder: study protocol for a randomised controlled trial.

Trials 2018 Sep 21;19(1):514. Epub 2018 Sep 21.

Division of Neuroscience and Experimental Psychology, University of Manchester, PACT-G Trial Office, Room 3.312, Jean McFarlane Building, Oxford Road, Manchester, M13 9PL, UK.

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 to improve adaptive function and reduce symptoms. A detailed mechanism study will address the process of such generalisation. Objective 1 will be to test if the PACT-G intervention improves autism symptom outcome in the home and school context of the intervention as well as in the primary outcome research setting. Objective 2 will use the mechanism analysis to test for evidence of acquired skills from intervention generalizing across contexts and producing additive effects on primary outcome.

Methods/design: This is a three-site, two-parallel-group, randomised controlled trial of the experimental treatment plus treatment as usual (TAU) versus TAU alone. Children aged 2-11 years (n = 244 (122 intervention/122 TAU; ~ 82/site) meeting criteria for core autism will be eligible. The experimental intervention builds on a clinic-based Pre-school Autism Communication Treatment model (PACT), delivered with the primary caregiver, combined with additional theory- and evidence-based strategies designed to enhance the generalisation of effects into naturalistic home and education contexts. The control intervention will be TAU.

Primary Outcome: autism symptom outcome, researcher-assessed using a standardised protocol.

Secondary Outcomes: autism symptoms, child interaction with parent or teacher, language and reported functional outcomes in home and school settings. Outcomes measured at baseline and 12-month endpoint in all settings with interim interaction measurements (7 months) to test treatment effect mechanisms. Primary analysis will estimate between-group difference in primary outcome using analysis of covariance with test of homogeneity of effect across age group. Mechanism analysis will use regression models to test for mediation on primary outcome by parent-child and teaching staff-child social interaction.

Discussion: This is an efficacy and mechanism trial of generalising evidence-based autism treatment into home and school settings. It will provide data on whether extending treatment across naturalistic contexts enhances overall effect and data on the mechanism in autism development of the generalisation of acquired developmental skills across contexts.

Trial Registration: ISRCTN, ID: 25378536 . Prospectively registered on 9 March 2016.
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http://dx.doi.org/10.1186/s13063-018-2881-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6150959PMC
September 2018

Effect of epilepsy on autism symptoms in Angelman syndrome.

Mol Autism 2018 8;9. Epub 2018 Jan 8.

NevSom, Department of Rare Disorders, Oslo University Hospital, Oslo, Norway.

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: Data from medical records and questionnaires were used to examine the association between age of epilepsy onset, autism symptoms, genetic aberration and communication level. Forty-eight participants had genetically verified AS (median age 14.5 years; range 1-57 years). A measure of autism symptoms (the Social Communication Questionnaire; SCQ) was completed for 38 individuals aged ≥ 4 years. Genetic cause was subgrouped into deletion and other genetic aberrations of the 15q11-q13 area. The number of signs used to communicate (< 20 sign and ≥ 20 signs) was used as a measure of nonverbal communication.

Results: Mean age of epilepsy onset was 3.0 years (range 3 months-7.8 years). Mean SCQ score for individuals without epilepsy was 13.6 (SD = 6.7) and with epilepsy 17.0 (SD = 5.6;  = 0.17); 58% used fewer than 20 signs to communicate. There were no age differences between groups according to presence of epilepsy, level of nonverbal communication or type of genetic aberration. SCQ scores were higher in individuals with the deletion than in those with other genetic aberrations (18.7 vs 10.8  = 0.008) and higher in the group who used < 20 signs to communicate (19.4 vs 14.1  = 0.007). Age of epilepsy onset was correlated with SCQ ( = - 0.61,  < 0.001). Multiple regression showed that age of seizure onset was significantly related to SCQ score ( = - 0.90;  = 0.006), even when the type of genetic abnormality was controlled ( = 0.53;  = 10.7;  = 0.001).

Conclusions: The study provides support for the notion that seizures themselves contribute more to autism symptoms than expected from the underlying genetic pathology alone. The study demonstrates how a rare genetic syndrome such as Angelman syndrome may be used to study the relation between epilepsy and autism symptomatology.
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http://dx.doi.org/10.1186/s13229-017-0185-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5759870PMC
October 2018

The Association Between Child and Family Characteristics and the Mental Health and Wellbeing of Caregivers of Children with Autism in Mid-Childhood.

J Autism Dev Disord 2018 04;48(4):1189-1198

Evelina London Children's Hospital, Guys and St Thomas University NHS Trust, London, UK.

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 household income below the median significantly predicted caregivers' mental health difficulties, but autism severity, child communication skills and family circumstances did not. Lower caregiver mental wellbeing was predicted by elevated child emotional and behavioural difficulties. The need to support the mental health and wellbeing of caregivers of children with autism is discussed in light of the results.
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http://dx.doi.org/10.1007/s10803-017-3392-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5861164PMC
April 2018

Development of a College Transition and Support Program for Students with Autism Spectrum Disorder.

J Autism Dev Disord 2017 Oct;47(10):3072-3078

Department of Psychiatry, University of Pittsburgh, Pittsburgh, PA, USA.

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 second level (Step 2) is for postsecondary students with ASD. Herein, we review the extant research on transition supports for emerging adults with ASD and describe the development of STEPS, including its theoretical basis and how it was informed by consumer input. The impact of STEPS on promotion of successful transition into college and positive outcomes for students during higher education is currently being evaluated in a randomized controlled trial.
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http://dx.doi.org/10.1007/s10803-017-3236-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5922249PMC
October 2017

Moderating Effects of Parental Characteristics on the Effectiveness of a Theory of Mind Training for Children with Autism: A Randomized Controlled Trial.

J Autism Dev Disord 2017 07;47(7):1987-1997

Department of Clinical Neuro and Developmental Psychology & EMGO Institute for Health and Care Research, Vrije Universiteit, Van der Boechorststraat 1, 1081BT, Amsterdam, The Netherlands.

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 condition had more ToM knowledge, showed fewer autistic features, and more ToM-related behavior than children in the control condition. Children who had one or two parents with at least a college degree, and children with parents not diagnosed with/suspected of having ASD themselves benefitted from the training. These findings provide valuable information about family variables that need to be taken into account in treatment design and implementation.
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http://dx.doi.org/10.1007/s10803-017-3117-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5487759PMC
July 2017

Child and Adult Factors Related to Quality of Life in Adults with Autism.

J Autism Dev Disord 2017 06;47(6):1830-1837

Institute of Psychiatry, Psychology and Neuroscience, King's College, Denmark Hill, London, SE58AF, UK.

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 low. Informant ratings indicated few correlations between current QoL and any child or adult factors. On self-report ratings, QoL was significantly negatively correlated with severity of repetitive behaviours in childhood; higher QoL was positively associated with better adult social outcomes. However, only a minority of adults (n = 22) could provide self-report data and findings highlight the need to develop valid measures for assessing the well-being of adults with autism.
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http://dx.doi.org/10.1007/s10803-017-3105-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5432629PMC
June 2017

Personal experiences of the Criminal Justice System by individuals with autism spectrum disorders.

Autism 2018 05 22;22(4):460-468. Epub 2017 Mar 22.

4 King's College London, UK.

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 defence and their experiences of being in prison and/or life following the offence. The nine individuals described a range of different and often negative experiences with the Criminal Justice System. However, the majority of those given a custodial sentence coped well in prison, probably due to the high levels of structure and firm frameworks in that environment. Explanation factors associated with the offences indicated that autism spectrum disorder characteristics such as misunderstandings, obsessions and idiosyncratic beliefs and/or behaviours were frequently involved, but stress was the most common explanation provided by the participants. The findings suggest limited understanding of autism spectrum disorders within the Criminal Justice System which needs to be significantly improved in order to secure their legal protection.
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http://dx.doi.org/10.1177/1362361316685554DOI Listing
May 2018

Autism spectrum disorder: outcomes in adulthood.

Curr Opin Psychiatry 2017 Mar;30(2):69-76

aDepartment of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College, London, UK bFaculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia cDepartment of Psychology, National University of Singapore, Singapore.

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 outcomes for adults with ASD.

Recent Findings: Most research on adult outcomes in ASD indicates very limited social integration, poor job prospects and high rates of mental health problems. However, studies vary widely in their methodology, choice of measures and selection of participants. Thus, estimates of how many adults have significant social and mental health problems are often conflicting. There is little consistent information on the individual, familial or wider social factors that may facilitate more positive social and psychological outcomes. There is a particular dearth of research on older individuals with ASD.

Summary: The very variable findings reported in this review reflect the problems of conducting research into lifetime outcomes for individuals with a condition as heterogeneous as ASD. Much more systematic research is needed to delineate different patterns of development in adulthood and to determine the factors influencing these trajectories.
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http://dx.doi.org/10.1097/YCO.0000000000000308DOI Listing
March 2017

Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial.

Lancet 2016 11 25;388(10059):2501-2509. Epub 2016 Oct 25.

University of Manchester, Manchester, UK; Royal Manchester Children's Hospital and Manchester Academic Health Sciences Centre, Manchester, UK. Electronic address:

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 randomised controlled trial of a parent-mediated social communication intervention for children aged 2-4 years with core autism. Follow-up ascertainment was done at three specialised clinical services centres in the UK (London, Manchester, and Newcastle) at a median of 5·75 years (IQR 5·42-5·92) from the original trial endpoint. The main blinded outcomes were the comparative severity score (CSS) from the Autism Diagnostic Observation Schedule (ADOS), the Dyadic Communication Assessment Measure (DCMA) of the proportion of child initiatiations when interacting with the parent, and an expressive-receptive language composite. All analyses followed the intention-to-treat principle. PACT is registered with the ISRCTN registry, number ISRCTN58133827.

Findings: 121 (80%) of the 152 trial participants (59 [77%] of 77 assigned to PACT intervention vs 62 [83%] of 75 assigned to treatment as usual) were traced and consented to be assessed between July, 2013, and September, 2014. Mean age at follow-up was 10·5 years (SD 0·8). Group difference in favour of the PACT intervention based on ADOS CSS of log-odds effect size (ES) was 0·64 (95% CI 0·07 to 1·20) at treatment endpoint and ES 0·70 (95% CI -0·05 to 1·47) at follow-up, giving an overall reduction in symptom severity over the course of the whole trial and follow-up period (ES 0·55, 95% CI 0·14 to 0·91, p=0·004). Group difference in DCMA child initiations at follow-up showed a Cohen's d ES of 0·29 (95% CI -0.02 to 0.57) and was significant over the course of the study (ES 0·33, 95% CI 0·11 to 0·57, p=0·004). There were no group differences in the language composite at follow-up (ES 0·15, 95% CI -0·23 to 0·53).

Interpretation: The results are the first to show long-term symptom reduction after a randomised controlled trial of early intervention in autism spectrum disorder. They support the clinical value of the PACT intervention and have implications for developmental theory.

Funding: Medical Research Council.
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http://dx.doi.org/10.1016/S0140-6736(16)31229-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5121131PMC
November 2016

Dual Cognitive and Biological Correlates of Anxiety in Autism Spectrum Disorders.

J Autism Dev Disord 2016 Oct;46(10):3295-307

Department of Child and Adolescent Psychiatry and Biomedical Research Centre for Mental Health, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.

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 anxiety disorder, 21 without) and 28 male controls, aged 10-16 years and with a full-scale IQ ≥ 70, completed a series of clinical, cognitive (attention bias/interpretation bias) and biological measures (salivary cortisol/HR response to social stress) associated with anxiety in TD populations. Structural equation modelling was used to reveal that that both attentional biases and physiological responsiveness were significant, but unrelated, predictors of anxiety in ASD.
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http://dx.doi.org/10.1007/s10803-016-2878-2DOI Listing
October 2016

Students with autism spectrum disorder in college: Results from a preliminary mixed methods needs analysis.

Res Dev Disabil 2016 Sep 1;56:29-40. Epub 2016 Jun 1.

School of Education Rehabilitation Research and Training Center, Virginia Commonwealth University, United States.

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 approach was taken to explore the needs of college-bound and college-enrolled students with ASD. Primary stakeholders (i.e., parents, educators/support staff from secondary and postsecondary institutions, and students) participated in an online survey (n=67) and focus groups (n=15).

Results: Across the stakeholder groups, commonly identified areas of difficulty included limited interpersonal competence, managing competing demands in postsecondary education, and poor emotional regulation. There was a high degree of agreement across stakeholders in the identified needs and challenges.

Implications: Findings from this preliminary needs analysis will inform the development of programming to support students with ASD.
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http://dx.doi.org/10.1016/j.ridd.2016.05.010DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4927339PMC
September 2016

Personality traits, autobiographical memory and knowledge of self and others: A comparative study in young people with autism spectrum disorder.

Autism 2017 04 9;21(3):357-367. Epub 2016 Jul 9.

3 University of Bath, UK.

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 autobiographical memory (semantic and episodic) and knowledge of self (internal/external self-knowledge and introspection/mentalising abilities) in children (aged 11-18 years) with high-functioning autism spectrum disorder and typically developing controls (total N = 48). Novel and standard tasks were employed. Compared to typically developing controls, young people with autism spectrum disorder had autobiographical memory difficulties that were characterised by a reduction in the retrieval of semantic personality traits, with more initial prompts required to facilitate episodic memory retrieval and fewer episodic memories containing emotional and sensory information. Knowledge of the self and others was also impaired, with reduced introspection and poorer mentalising abilities. Young people with autism spectrum disorder were also identified as presenting with an atypical relationship between autobiographical memory and self-knowledge, which was significantly different from typically developing controls. Test performance is discussed in relation to the functions of autobiographical memory, with consideration of how these cognitive difficulties may contribute to clinical practices and the social and behavioural characteristics of autism spectrum disorder.
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http://dx.doi.org/10.1177/1362361316645429DOI Listing
April 2017

The Developmental Trajectory of Self-Injurious Behaviours in Individuals with Prader Willi Syndrome, Autism Spectrum Disorder and Intellectual Disability.

Diseases 2016 Feb 6;4(1). Epub 2016 Feb 6.

Brain and Mind Research Centre, University of Sydney, 94 Mallett St, Camperdown NSW 2050, Australia.

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 types and natural history of self-injurious behaviour are more common in PWS and ASD and which are shared with other forms of developmental disability. Self-injury displayed by individuals with PWS and individuals with ASD was compared with that reported in a group of individuals with intellectual disability due to mixed aetiology (ID group). Three self-injurious behaviours (head banging, skin-picking and hitting and/or biting self) were measured on five occasions over 18 years using the Developmental Behaviour Checklist (DBC) a well-validated caregiver report measure. Rates of skin picking were higher in individuals with PWS and hitting and/or biting self was higher in individuals with ASD compared to the ID group. Rates of head banging were similar across the three groups. Over time, skin-picking and head banging increased with age for individuals with ASD and hitting and/or biting self increased for the PWS group. In the PWS and mixed ID groups head banging decreased with age. These findings suggest that the typology and developmental trajectories of self-injurious behaviours differ between those with PWS and ASD.
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http://dx.doi.org/10.3390/diseases4010009DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5456304PMC
February 2016

Cost-effectiveness analysis of a communication-focused therapy for pre-school children with autism: results from a randomised controlled trial.

BMC Psychiatry 2015 Dec 21;15:316. Epub 2015 Dec 21.

Manchester Academic Health Sciences Centre, Jean McFarlane Building, Oxford Road, Manchester, M13 9PL, UK.

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 to support resource allocation decisions. This study reports an economic evaluation of a parent-mediated, communication-focused therapy carried out within the Pre-School Autism Communication Trial (PACT).

Methods: 152 pre-school children with autism were randomly assigned to treatment as usual (TAU) or PACT + TAU. Primary outcome was severity of autism symptoms at 13-month follow-up. Economic data included health, education and social services, childcare, parental productivity losses and informal care.

Results: Clinically meaningful symptom improvement was evident for 53 % of PACT + TAU versus 41 % of TAU (odds ratio 1.91, p = 0.074). Service costs were significantly higher for PACT + TAU (mean difference £4,489, p < 0.001), but the difference in societal costs was smaller and non-significant (mean difference £1,385, p = 0.788) due to lower informal care rates for PACT + TAU.

Conclusions: Improvements in outcome generated by PACT come at a cost. Although this cost is lower when burden on parents is included, the cost and effectiveness results presented do not support the cost-effectiveness of PACT + TAU compared to TAU alone.

Trial Registration: Current Controlled Trials ISRCTN58133827.
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http://dx.doi.org/10.1186/s12888-015-0700-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4685630PMC
December 2015