Hannah Hayward

Caregiver Burden as People With Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder Transition into Adolescence and Adulthood in the United Kingdom

OBJECTIVE There is increasing recognition that autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) are associated with significant costs and burdens. However, research on their impact has focused mostly on the caregivers of young children; few studies have examined caregiver burden as children transition into adolescence and young adulthood, and no one has compared the impact of ASD to other neurodevelopmental disorders (e.g., ADHD). METHOD We conducted an observational study of 192 families caring for a young person (aged 14 to 24 years) with a childhood diagnosis of ASD or ADHD (n = 101 and n = 91, respectively) in the United Kingdom. A modified stress-appraisal model was used to investigate the correlates of caregiver burden as a function of family background (parental education), primary stressors (symptoms), primary appraisal (need), and resources (use of services). RESULTS Both disorders were associated with a high level of caregiver burden, but it was significantly greater in ASD. In both groups, caregiver burden was mainly explained by the affected young persons unmet need. Domains of unmet need most associated with caregiver burden in both groups included depression/anxiety and inappropriate behavior. Specific to ASD were significant associations between burden and unmet needs in domains such as social relationships and major mental health problems. CONCLUSIONS Adolescence and young adulthood are associated with high levels of caregiver burden in both disorders; in ASD, the level is comparable to that reported by persons caring for individuals with a brain injury. Interventions are required to reduce caregiver burden in this population.

Does sex influence the diagnostic evaluation of autism spectrum disorder in adults

It is unknown whether sex influences the diagnostic evaluation of autism spectrum disorder, or whether male and female adults within the spectrum have different symptom profiles. This study reports sex differences in clinical outcomes for 1244 adults (935 males and 309 females) referred for autism spectrum disorder assessment. Significantly, more males (72%) than females (66%) were diagnosed with an autism spectrum disorder of any subtype (x2 = 4.09; p = 0.04). In high-functioning autism spectrum disorder adults (IQ > 70; N = 827), there were no significant sex differences in severity of socio-communicative domain symptoms. Males had significantly more repetitive behaviours/restricted interests than females (p = 0.001, d = 0.3). A multivariate analysis of variance indicated a significant interaction between autism spectrum disorder subtype (full-autism spectrum disorder/partial-autism spectrum disorder) and sex: in full-autism spectrum disorder, males had more severe socio-communicative symptoms than females; for partial-autism spectrum disorder, the reverse was true. There were no sex differences in prevalence of co-morbid psychopathologies. Sex influenced diagnostic evaluation in a clinical sample of adults with suspected autism spectrum disorder. The sexes may present with different manifestations of the autism spectrum disorder phenotype and differences vary by diagnostic subtype. Understanding and awareness of adult female repetitive behaviours/restricted interests warrant attention and sex-specific diagnostic assessment tools may need to be considered.

Predicting the diagnosis of autism in adults using the Autism-Spectrum Quotient (AQ) questionnaire

Background Many adults with autism spectrum disorder (ASD) remain undiagnosed. Specialist assessment clinics enable the detection of these cases, but such services are often overstretched. It has been proposed that unnecessary referrals to these services could be reduced by prioritizing individuals who score highly on the Autism-Spectrum Quotient (AQ), a self-report questionnaire measure of autistic traits. However, the ability of the AQ to predict who will go on to receive a diagnosis of ASD in adults is unclear. Method We studied 476 adults, seen consecutively at a national ASD diagnostic referral service for suspected ASD. We tested AQ scores as predictors of ASD diagnosis made by expert clinicians according to International Classification of Diseases (ICD)-10 criteria, informed by the Autism Diagnostic Observation Schedule-Generic (ADOS-G) and Autism Diagnostic Interview-Revised (ADI-R) assessments. Results Of the participants, 73% received a clinical diagnosis of ASD. Self-report AQ scores did not significantly predict receipt of a diagnosis. While AQ scores provided high sensitivity of 0.77 [95% confidence interval (CI) 0.72–0.82] and positive predictive value of 0.76 (95% CI 0.70–0.80), the specificity of 0.29 (95% CI 0.20–0.38) and negative predictive value of 0.36 (95% CI 0.22–0.40) were low. Thus, 64% of those who scored below the AQ cut-off were ‘false negatives’ who did in fact have ASD. Co-morbidity data revealed that generalized anxiety disorder may ‘mimic’ ASD and inflate AQ scores, leading to false positives. Conclusions The AQs utility for screening referrals was limited in this sample. Recommendations supporting the AQs role in the assessment of adult ASD, e.g. UK NICE guidelines, may need to be reconsidered.

The EU-AIMS Longitudinal European Autism Project (LEAP): Design and methodologies to identify and validate stratification biomarkers for autism spectrum disorders

BackgroundThe tremendous clinical and aetiological diversity among individuals with autism spectrum disorder (ASD) has been a major obstacle to the development of new treatments, as many may only be effective in particular subgroups. Precision medicine approaches aim to overcome this challenge by combining pathophysiologically based treatments with stratification biomarkers that predict which treatment may be most beneficial for particular individuals. However, so far, we have no single validated stratification biomarker for ASD. This may be due to the fact that most research studies primarily have focused on the identification of mean case-control differences, rather than within-group variability, and included small samples that were underpowered for stratification approaches. The EU-AIMS Longitudinal European Autism Project (LEAP) is to date the largest multi-centre, multi-disciplinary observational study worldwide that aims to identify and validate stratification biomarkers for ASD.MethodsLEAP includes 437 children and adults with ASD and 300 individuals with typical development or mild intellectual disability. Using an accelerated longitudinal design, each participant is comprehensively characterised in terms of clinical symptoms, comorbidities, functional outcomes, neurocognitive profile, brain structure and function, biochemical markers and genomics. In addition, 51 twin-pairs (of which 36 had one sibling with ASD) are included to identify genetic and environmental factors in phenotypic variability.ResultsHere, we describe the demographic characteristics of the cohort, planned analytic stratification approaches, criteria and steps to validate candidate stratification markers, pre-registration procedures to increase transparency, standardisation and data robustness across all analyses, and share some ‘lessons learnt’. A clinical characterisation of the cohort is given in the companion paper (Charman et al., accepted).ConclusionWe expect that LEAP will enable us to confirm, reject and refine current hypotheses of neurocognitive/neurobiological abnormalities, identify biologically and clinically meaningful ASD subgroups, and help us map phenotypic heterogeneity to different aetiologies.

Characteristics of prisoners with neurodevelopmental disorders and difficulties

BACKGROUND Previous studies have found high rates of attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and intellectual disability (ID) within the criminal justice system (CJS). However, little is understood about prisoners with neurodevelopmental disorders and difficulties (NDD) or their needs. This study aimed to identify prisoners with NDD and compare their characteristics with prisoners without NDD on a range of socio-demographic and social functioning measures. METHOD This was a descriptive, cross-sectional study carried out using face-to-face interviews with 240 participants in a London Category C prison. Standardised tools were used to assess prisoners for ADHD, ASD and ID. RESULTS The study identified 87 prisoners who screened positive for one or more type of NDD. Participants with NDD were significantly younger and more likely to be single [(odds ratio) OR = 2.1], homeless (OR = 3.4) or unemployed (OR = 2.6) before they came into prison. They also had poorer educational achievements that those without NDD. Over 80% of those with NDD had a previous conviction or imprisonment. CONCLUSIONS The findings confirm the presence of significant numbers of people with NDD in a male prison. Services across the CJS are required for this group; specifically, there is a need for raised awareness among those working in the CJS to improve the recognition of offenders with NDD. Services in the community need to work with individuals with NDD who are at risk of offending, targeting those who are homeless, unemployed and have poor employment opportunities.

Six-year follow-up study of combined type ADHD from childhood to young adulthood: Predictors of functional impairment and comorbid symptoms.

BACKGROUND ADHD in childhood is associated with development of negative psychosocial and behavioural outcomes in adults. Yet, relatively little is known about which childhood and adulthood factors are predictive of these outcomes and could be targets for effective interventions. To date follow-up studies have largely used clinical samples from the United States with children ascertained at baseline using broad criteria for ADHD including all clinical subtypes or the use of DSM III criteria. AIMS To identify child and adult predictors of comorbid and psychosocial comorbid outcomes in ADHD in a UK sample of children with DSM-IV combined type ADHD. METHOD One hundred and eighteen adolescents and young adults diagnosed with DSM-IV combined type ADHD in childhood were followed for an average of 6years. Comorbid mental health problems, drug and alcohol use and police contact were compared for those with persistent ADHD, sub-threshold ADHD and population norms taken from the Adult Psychiatric Morbidity Study 2007. Predictors included ADHD symptomology and gender. RESULTS Persistent ADHD was associated with greater levels of anger, fatigue, sleep problems and anxiety compared to sub-threshold ADHD. Comorbid mental health problems were predicted by current symptoms of hyperactivity-impulsivity, but not by childhood ADHD severity. Both persistent and sub-threshold ADHD was associated with higher levels of drug use and police contact compared to population norms. CONCLUSIONS Young adults with a childhood diagnosis of ADHD showed increased rates of comorbid mental health problems, which were predicted by current levels of ADHD symptoms. This suggests the importance of the continuing treatment of ADHD throughout the transitional years and into adulthood. Drug use and police contact were more common in ADHD but were not predicted by ADHD severity in this sample.

Screening and diagnostic assessment of neurodevelopmental disorders in a male prison

Purpose – The purpose of this paper is to identify neurodevelopmental disorders and difficulties (NDD) in a male prison. The study used standardised tools to carry out screening and diagnostic assessment of the attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and intellectual disability (ID). Design/methodology/approach – The ADHD self-report scale, 20-item autism quotient and the Learning Disability Screening Questionnaire were used to screen 240 male prisoners. Prisoners who screened positive on one or more of these scales or self-reported a diagnosis of ADHD, ASD or ID were further assessed using the diagnostic interview for ADHD in adults, adapted Autism Diagnostic Observation Schedule and the Quick Test. Findings – Of the 87 prisoners who screened positive for NDD and were further assessed, 70 met the study’s diagnostic criteria for ADHD, ASD or ID. Most of those with NDD (51 per cent) had previously gone unrecognised and a high proportion (51 per cent) were identified ...

Screening for co-occurring conditions in adults with autism spectrum disorder using the Strengths and Difficulties Questionnaire: a pilot study

Adolescents and adults with autism spectrum disorder (ASD) are at elevated risk of co‐occurring mental health problems. These are often undiagnosed, can cause significant impairment, and place a very high burden on family and carers. Detecting co‐occurring disorders is extremely important. However, there is no validated screening tool for this purpose. The aim of this pilot study is to test the utility of the strengths and difficulties questionnaire (SDQ) to screen for co‐occurring emotional disorders and hyperactivity in adolescents and adults with ASD. The SDQ was completed by 126 parents and 98 individuals with ASD (in 79 cases both parent and self‐report were available from the same families). Inter‐rater reliability, test‐retest stability, internal consistency, and construct validity were examined. SDQ subscales were also compared to clinically utilized measures of emotional disorders and hyperactivity to establish the ability to predict risk of disorder. Inter‐rater reliability (r = 0.42), test‐retest stability (r = 0.64), internal consistency (α = 0.52–0.81) and construct validity (r = 0.42–0.57) for the SDQ subscales were comparable to general population samples. Parent‐ and self‐report SDQ subscales were significantly associated with measures of anxiety, depression and hyperactivity (62–74% correctly classified). Parent‐report performed significantly better than self‐report; adults with ASD under‐reported difficulties. The SDQ shows promise as a simple and efficient way to screen for emotional disorders and hyperactivity in adolescents and adults with ASD that could help reduce the impact of these disorders on individuals and their families. However, further more systematic attempts at validation are warranted. Autism Res 2016, 9: 1353–1363.

Autism spectrum disorder, attention-deficit hyperactivity disorder and offending

Purpose – A wealth of research on autism spectrum disorders (ASD) and attention-deficit hyperactivity disorder (ADHD) has led to increased understanding and identification of each of these developmental disorders. Existing literature has sparked controversial discussions regarding whether aspects of ASD and ADHD predispose individuals to criminality. The purpose of this paper is to explore the link between these conditions and offending. Design/methodology/approach – A review of the literature on ASD, ADHD and offending was undertaken. This paper looks at the particular focus of the literature on the involvement of individuals with ADHD and ASD within the criminal justice system. Findings – There is some evidence of a link between ADHD and criminality. However, the relationship between ASD and offending is a little more difficult to ascertain. Complicating this further is the relatively unexplored subject of comorbid ASD/ADHD and criminal behaviour. This paper found that additional cognitive deficits and ...

Autism Spectrum Disorder and Mental Health Problems Among Prisoners

Background The provision of support for people with autism spectrum disorder (ASD) within the community is improving as a consequence of policy and legislative changes. However, specialist services are not currently provided in prisons. Objectives This aim of the study was to determine the extent of ASD and co-occurring mental health problems among prisoners. We tested the hypothesis that ASD traits would be unrecognised by prison staff and would be significantly associated with increased rates of anxiety, depression and suicidality. Methods ASD traits were measured among 240 prisoners in a resettlement prison in London, UK using the 20-item Autism Quotient (AQ-20). Anxiety, depression and suicidality were assessed using the Mini International Neuropsychiatric Interview (MINI). Results There were 39 participants (16%) with an AQ-20 score ≥10; indicating significant autistic traits. Mental health data were available for 37 ‘high autistic trait’ participants and another 101 prisoners with no/low ASD traits. There was a significant positive association between AQ-20 and suicidality scores (r=.29, p=0.001). Participants with ASD traits had significantly higher suicidality scores (means=15.1 vs. 5, p= 0.001) and chi-square analysis showed that they were more likely to have a high suicidality rating (27% vs. 8%, p=0.003) than those without ASD traits. Moreover, those with ASD were significantly more likely to be experiencing a current episode of depression (30% vs. 6%, p Conclusion Our initial data suggests that severity of ASD traits is a risk factor for suicidality and common mental health problems among prisoners.