• Addressing the inverse care law: The role of community paediatric services

      Beeley, Chris (2014)
      Background: Children's health suffers disproportionately from the effects of poverty. The inverse care law states that those who need care the most are the least likely to receive it. Community paediatricians are well placed to address health inequalities in children. Aims: To explore, using routinely collected data, whether we address health inequalities and the inverse care law, particularly for certain conditions targeted by our specialty. Methods: Five years of data were analysed, during which health equity audits have led to service changes in order to tackle inequities. The data include postcodes, allowing each child to be assigned to a deprivation quintile, and a range of diagnoses, including five sentinel conditions: attention deficit hyperactivity disorder (ADHD) on medication, autistic spectrum disorder (ASD), epilepsy, cerebral palsy and Down's syndrome. This allowed analysis of the caseload by deprivation index for these conditions, comparison with the background population and exploration of time trends. Results: The number of children on the caseload and their distribution across the quintiles remained stable. The proportion of deprived children (i.e. in the lowest two quintiles) on the caseload over the last five years taken together is 56%, compared to 44% in the background population. The numbers of children with ADHD on medication has almost quadrupled in deprived quintiles and doubled in the least deprived quintile, while the numbers of children with this diagnosis in the most deprived is four times that in the least deprived. Numbers of children with ASD have also increased in each quintile. In contrast, the number of children with epilepsy and cerebral palsy did not show much variation, but those from deprived quintiles made up a greater proportion of the caseload. Conclusions: Routine data collection demonstrates that inequalities are addressed using all four quality domains of service provision and sentinel conditions more likely to affect deprived children are targeted. We believe it is possible for all services to collect and analyse data thus with minimal effort, thereby providing a foundation from which to address the inverse care law.
    • Anxiety in high-functioning children with autism

      Gillott, Alinda (2001)
      High-functioning children with autism were compared with two control groups on measures of anxiety and social worries. Comparison control groups consisted of children with specific language impairment (SLI) and normally developing children. Each group consisted of 15 children between the ages of 8 and 12 years and were matched for age and gender. Children with autism were found to be most anxious on both measures. High anxiety subscale scores for the autism group were separation anxiety and obsessive-compulsive disorder. These findings are discussed within the context of theories of autism and anxiety in the general population of children. Suggestions for future research are made.
    • Atypical electrophysiological indices of eyes-open and eyes-closed resting-state in children and adolescents with ADHD and autism

      Bellato, Alessio; Arora, Iti; Kochhar, Puja; Hollis, Chris P.; Groom, Madeleine J. (2020)
      Investigating electrophysiological measures during resting-state might be useful to investigate brain functioning and responsivity in individuals under diagnostic assessment for attention deficit hyperactivity disorder (ADHD) and autism. EEG was recorded in 43 children with or without ADHD and autism, during a 4-min-long resting-state session which included an eyes-closed and an eyes-open condition. We calculated and analyzed occipital absolute and relative spectral power in the alpha frequency band (8-12 Hz), and alpha reactivity, conceptualized as the difference in alpha power between eyes-closed and eyes-open conditions. Alpha power was increased during eyes-closed compared to eyes-open resting-state. While absolute alpha power was reduced in children with autism, relative alpha power was reduced in children with ADHD, especially during the eyes-closed condition. Reduced relative alpha reactivity was mainly associated with lower IQ and not with ADHD or autism. Atypical brain functioning during resting-state seems differently associated with ADHD and autism, however further studies replicating these results are needed; we therefore suggest involving research groups worldwide by creating a shared and publicly available repository of resting-state EEG data collected in people with different psychological, psychiatric, or neurodevelopmental conditions, including ADHD and autism.
    • Autistic traits in treatment-seeking transgender adults

      Nobili, Anna; Glazebrook, Cris; Bouman, Walter P.; Glidden, Derek; Arcelus, Jon (2018)
      The present study aimed to compare prevalence of autistic traits measured by the self-reported autism spectrum quotient-short (AQ-short) in a transgender clinical population (n = 656) matched by age and sex assigned at birth to a cisgender community sample. Results showed that transgender and cisgender people reported similar levels of possible autistic caseness. Transgender people assigned female were more likely to have clinically significant autistic traits compared to any other group. No difference was found between those assigned male. High AQ scores may not be indicative of the presence of an autism spectrum condition as the difference between groups mainly related to social behaviours; such scores may be a reflection of transgender people's high social anxiety levels due to negative past experiences.
    • Brief report: Assessment of a screening tool for autistic spectrum disorders in adult population

      Ferriter, Michael; Bendall, Patricia; Cordess, Christopher; Elliot, Karon; Hudson, Ingrid; Humpston, Rachael; Jones, Jean; Souflas, Pauline; Taylor, Michael (2001)
      The purpose of this study was to see if it was possible to use an assessment instrument to screen a large population for the possibility of Autistic Spectrum Disorder. 89 Ss participated in a study designed to test the effectiveness of the Nylander questionnaire. The Nylander questionnaire produced a very high rate of false positives, which casts doubt on the utility of this questionnaire to assess rates of Autistic Spectrum Disorder in the absence of further time-consuming and expensive follow-up investigations. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
    • Brief report: Autism spectrum disorder: A comprehensive survey of randomized controlled trials

      Adams, Clive E. (2018)
      We searched the Cochrane Central Register of Controlled Trials to provide an overview of evidence from randomized controlled trials (RCTs) of therapeutic interventions for autism spectrum disorders. From the final survey (529 RCTs), the mean size was 49 participants (standard deviation 50, range 1-479, median 36, mode 40), with a sharp increase in the number of RCTs from 2008. The most frequently evaluated intervention was antipsychotic treatment (n = 44, 3006 participants). The journal with the most RCTs was the Journal of Autism and Developmental Disorders (N = 104). Most trials were small in size, emphasising the need for research groups to collaborate to generate higher quality data with greater applicability to clinical practice.
    • Case history of co-morbid Asperger's syndrome and paraphilic behaviour

      Milton, John; Duggan, Conor; Latham, Andrew (2002)
      We report a case of a man with Asperger's syndrome, paraphilic behaviour and convictions for sexual offences. We describe his assessment within a secure mental health setting to determine issues of diagnosis, treatment and risk. We also highlight the difficulty in reducing the risk of further offending because of the apparent ineffectiveness of interventions for the small group with Asperger's syndrome and an offending history. Consequently, they are likely to face long periods in institutional settings.
    • Clinical and cost effectiveness of staff training in the delivery of Positive Behaviour Support (PBS) for adults with intellectual disabilities, autism spectrum disorder and challenging behaviour - randomised trial

      Bosco, Alessandro (2020)
      BACKGROUND: Although Positive Behaviour Support (PBS) is a widely used intervention for ameliorating challenging behaviour (CB), evidence for its use in adults with intellectual disability (ID) and comorbid autism (ASD) is lacking. We report a planned subsidiary analysis of adults with both ASD and ID who participated in a randomised trial of PBS delivered by health professionals. METHODS: The study was a multicentre, cluster randomised trial conducted in 23 community ID services in England, participants were randomly allocated to either the delivery of PBS (n = 11 clusters) or to treatment as usual (TAU; n = 12). One-hundred and thirteen participants (46% of all participants in the trial) had a diagnosis of ID, autism spectrum disorder and CB (ASD+); (47 allocated to the intervention arm, and 66 to the control). CB (primary outcome) was measured with the Aberrant Behaviour Checklist total score (ABC-CT). Secondary outcomes included mental health status, psychotropic medication use, health and social care costs and quality adjusted life years (QALYs) over 12 months. RESULTS: There were no statistically significant differences in ABC-CT between ASD+ groups randomised to the two arms over 12 months (adjusted mean difference = - 2.10, 95% CI: - 11.3 7.13, p = 0.655) or other measures. The mean incremental cost of the intervention per participant was pound628 (95% CI - pound1004 to pound2013). There was a difference of 0.039 (95% CI - 0.028 to 0.103) for QALYs and a cost per QALY gained of pound16,080. CONCLUSIONS: Results suggest lack of clinical effectiveness for PBS delivered by specialist ID clinical teams. Further evidence is needed from larger trials, and development of improved interventions. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01680276.
    • Developing pretend play in autistic children using the playboxes joint play approach as part of ongoing practice

      Cockayne, Rachael (2021)
      A repeated measures single subject design was used to examine the effectiveness of a joint play approach embedded in professional practice, in supporting pretend play for autistic children. Seven autistic children, aged 5-8 years, with a placement within a specialist educational provision, and who demonstrated restricted play, participated in weekly sessions using the Playboxes approach over a period of 3 months. Pre- and post-approach pretend play abilities were assessed using the Symbolic Play Test and the Test of Pretend Play. Every child gained increased age-equivalent scores on the Test of Pretend Play, ranging from + 8 to + 30 months. Pretend Play abilities can support developmental outcomes and incorporation of this approach into regular practice could be of value for autistic children.
    • The effectiveness of a psychoeducation intervention delivered via WhatsApp for mothers of children with Autism Spectrum Disorder (ASD) in the Kingdom of Saudi Arabia: A randomized controlled trial

      Hemdi, Alyaa; Daley, David (2017)
      BACKGROUND: Mothers of children with autism spectrum disorder (ASD) report high levels of stress and lower levels of well-being than parents of typically developing children. Current interventions for ASD typically focus on working with the child rather than delivering strategies to help support parents. OBJECTIVE: To evaluate the effectiveness of a psychoeducation intervention developed to support mothers of children with ASD in Saudi Arabia. METHOD: Sixty-two mothers (23-52 years) of children (26-78 months) were recruited to a multisite randomized controlled trials of the intervention. The intervention consisted of one face-to-face session (60 min) and four virtual sessions (30 min each) delivered using WhatsApp. Parenting stress was the primary outcome, with secondary outcomes focusing on maternal depression, anxiety, and happiness, and child behaviour problems and ASD symptoms. Data were collected at baseline T1, immediately postintervention T2 and 8-week follow-up T3. RESULTS: One-way analysis of covariance was used at T2 and T3 with T1 scores entered as a covariate. Improvements were found at T2 for stress (F = 234.34, p = .00, and d = -1.52) and depression (F = 195.70, p = .00, and d = -2.14) but not anxiety, and these results were maintained at T3. Changes in child behaviour problems were limited to improvements in hyperactivity at T2 (F = 133.66, p = .00, and d = -1.54). Although changes in stress and depression were statistically significant, change to clinically normal levels was limited to depression. None of the participants had recovered after the intervention (Parent Stress Index Short Form stress scores), whereas 23 mothers (71.87%) in the intervention group had recovered at T2 and 22 (68.75%) at T3 (Hospital Anxiety and Depression Scale depression scores). CONCLUSION: This intervention with WhatsApp support is beneficial but may need to be augmented with other forms of support for mothers of children with ASD including more condensed sessions on stress and interventions targeting anxiety.
    • The effectiveness of web-based interventions delivered to children and young people with neurodevelopmental disorders: Systematic review and meta-analysis

      Khan, Kareem; Hall, Charlotte L.; Davies, E. Bethan; Hollis, Chris P.; Glazebrook, Cris (2019)
      BACKGROUNDThe prevalence of certain neurodevelopmental disorders, specifically autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD), has been increasing over the last four decades. Nonpharmacological interventions are available that can improve outcomes and reduce associated symptoms such as anxiety, but these are often difficult to access. Children and young people are using the internet and digital technology at higher rates than any other demographic, but although Web-based interventions have the potential to improve health outcomes in those with long-term conditions, no previous reviews have investigated the effectiveness of Web-based interventions delivered to children and young people with neurodevelopmental disorders.OBJECTIVEThis study aimed to review the effectiveness of randomized controlled trials (RCTs) of Web-based interventions delivered to children and young people with neurodevelopmental disorders.METHODSSix databases and one trial register were searched in August and September 2018. RCTs were included if they were published in a peer-reviewed journal. Interventions were included if they (1) aimed to improve the diagnostic symptomology of the targeted neurodevelopmental disorder or associated psychological symptoms as measured by a valid and reliable outcome measure; (2) were delivered on the Web; (3) targeted a youth population (aged ≤18 years or reported a mean age of ≤18 years) with a diagnosis or suspected diagnosis of a neurodevelopmental disorder. Methodological quality was rated using the Joanna Briggs Institute Critical Appraisal Checklist for RCTs.RESULTSOf 5140 studies retrieved, 10 fulfilled the inclusion criteria. Half of the interventions were delivered to children and young people with ASDs with the other five targeting ADHD, tic disorder, dyscalculia, and specific learning disorder. In total, 6 of the 10 trials found that a Web-based intervention was effective in improving condition-specific outcomes or reducing comorbid psychological symptoms in children and young people. The 4 trials that failed to find an effect were all delivered by apps. The meta-analysis was conducted on five of the trials and did not show a significant effect, with a high level of heterogeneity detected (n=182 [33.4%, 182/545], 5 RCTs; pooled standardized mean difference=-0.39; 95% CI -0.98 to 0.20; Z=-1.29; P=.19 [I2=72%; P=.006]).CONCLUSIONSWeb-based interventions can be effective in reducing symptoms in children and young people with neurodevelopmental disorders; however, caution should be taken when interpreting these findings owing to methodological limitations, the minimal number of papers retrieved, and small samples of included studies. Overall, the number of studies was small and mainly limited to ASD, thus restricting the generalizability of the findings.TRIAL REGISTRATIONPROSPERO International Prospective Register of Systematic Reviews: CRD42018108824; http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42018108824.
    • Exploring the experiences of parents whose child has received a diagnosis of autistic spectrum disorder in adulthood

      Gillott, Alinda (2022)
      There is a growing trend of adult diagnosis of Autism Spectrum Disorder (ASD). Research has found that diagnosis can prompt a process of sense-making which may be disrupted by lack of post-diagnostic support. Given the continued involvement of many parents in supporting their adult son or daughter with ASD, it is vital to understand their experiences to meet their needs in adapting to the diagnosis. Eleven parents of recently diagnosed adults participated in semi-structured interviews which were analysed thematically. Findings demonstrate that the new knowledge of diagnosis facilitates changes in attributions, interactions and relationships, but can result in unmet emotional and relational support needs. Findings are relevant to those involved in adult diagnosis, and the provision of post-diagnostic support.
    • Gender dysphoria and autism spectrum disorder: A systematic review of the literature

      Glidden, Derek; Bouman, Walter P.; Jones, Bethany A.; Arcelus, Jon (2016)
      Introduction: There is a growing clinical recognition that a significant proportion of patients with gender dysphoria have concurrent autism spectrum disorder (ASD). Aim: The purpose of this review is to systematically appraise the current literature regarding the co-occurrence of gender dysphoria and ASD. Methods: A systematic literature search using Medline and PubMed, PsycINFO, and Embase was conducted from 1966 to July 2015. Main Outcome Measures: Fifty-eight articles were generated from the search. Nineteen of these publications met the inclusion criteria. Results: The literature investigating ASD in children and adolescents with gender dysphoria showed a higher prevalence rate of ASD compared with the general population. There is a limited amount of research in adults. Only one study showed that adults attending services for gender dysphoria had increased ASD scores. Another study showed a larger proportion of adults with atypical gender identity and ASD. Conclusion: Although the research is limited, especially for adults, there is an increasing amount of evidence that suggests a co-occurrence between gender dysphoria and ASD. Further research is vital for educational and clinical purposes. Copyright © 2016 International Society for Sexual Medicine.
    • Gluten- and casein-free diets for autistic spectrum disorder

      Ferriter, Michael (2008)
      Background: It has been suggested that peptides from gluten and casein may have a role in the origins of autism and that the physiology and psychology of autism might be explained by excessive opioid activity linked to these peptides. Research has reported abnormal levels of peptides in the urine and cerebrospinal fluid of people with autism. Objectives: To determine the efficacy of gluten and/or casein free diets as an intervention to improve behaviour, cognitive and social functioning in individuals with autism. Search strategy: The following electronic databases were searched: CENTRAL(The Cochrane Library Issue 2, 2007), MEDLINE (1966 to April 2007), PsycINFO (1971 to April 2007), EMBASE (1974 to April 2007), CINAHL (1982 to April 2007), ERIC (1965 to 2007), LILACS (1982 to April 2007), and the National Research register 2007 (Issue1). Review bibliographies were also examined to identify potential trials. Selection criteria: All randomised controlled trials (RCT) involving programmes which eliminated gluten, casein or both gluten and casein from the diets of individuals diagnosed with an autistic spectrum disorder. Data collection and analysis: Abstracts of studies identified in searches of electronic databases were assessed to determine inclusion by two independent authors The included trials did not share common outcome measures and therefore no meta-analysis was possible. Data are presented in narrative form. Main results: Two small RCTs were identified (n = 35). No meta-analysis was possible. There were only three significant treatment effects in favour of the diet intervention: overall autistic traits, mean difference (MD) = -5.60 (95% CI -9.02 to -2.18), z = 3.21, p=0.001 (Knivsberg 2002) ; social isolation, MD = -3.20 (95% CI -5.20 to 1.20), z = 3.14, p = 0.002) and overall ability to communicate and interact, MD = 1.70 (95% CI 0.50 to 2.90), z = 2.77, p = 0.006) (Knivsberg 2003). In addition three outcomes showed no significant difference between the treatment and control group and we were unable to calculate mean differences for ten outcomes because the data were skewed. No outcomes were reported for disbenefits including harms. Authors' conclusions: Research has shown of high rates of use of complementary and alternative therapies (CAM) for children with autism including gluten and/or casein exclusion diets. Current evidence for efficacy of these diets is poor. Large scale, good quality randomised controlled trials are needed. Copyright © 2008 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
    • Heart rate variability in children and adolescents with autism, ADHD and co-occurring autism and ADHD, during passive and active experimental conditions

      Bellato, Alessio; Arora, Iti; Kochhar, Puja; Hollis, Chris P.; Groom, Madeleine J. (2021)
      Despite overlaps in clinical symptomatology, autism and ADHD may be associated with opposite autonomic arousal profiles which might partly explain altered cognitive and global functioning. We investigated autonomic arousal in 106 children/adolescents with autism, ADHD, co-occurring autism/ADHD, and neurotypical controls. Heart rate variability was recorded during resting-state, a 'passive' auditory oddball task and an 'active' response conflict task. Autistic children showed hyper-arousal during the active task, while those with ADHD showed hypo-arousal during resting-state and the passive task. Irrespective of diagnosis, children characterised by hyper-arousal showed more severe autistic symptomatology, increased anxiety and reduced global functioning than those displaying hypo-arousal, suggesting the importance of considering individual autonomic arousal profiles for differential diagnosis of autism/ADHD and when developing personalised interventions.
    • Is autonomic function during resting-state atypical in autism: A systematic review of evidence

      Arora, Iti; Bellato, Alessio; Hollis, Chris P.; Groom, Madeleine J. (2021)
      Background: Theories of differences in resting-state arousal in autistic individuals are influential. Differences in arousal during resting-state would impact engagement and adaptation to the environment, having a cascading effect on development of attentional and social skills. Objectives: We systematically evaluated the evidence for differences in measures of autonomic arousal (heart rate, pupillometry or electrodermal activity) during resting-state in autistic individuals; to understand whether certain contextual or methodological factors impact reports of such differences. Data sources: We searched PsycInfo, MEDLINE and EMBASE databases for papers published until 16th May 2019. Of 1207 titles initially identified, 60 met inclusion criteria. Results and Conclusions: Of the 51 studies that investigated group differences between neurotypical and autistic participants, 60.8 % found evidence of group differences. While findings of hyperarousal were more common, particularly using indices of parasympathetic function, findings of hypo-arousal and autonomic dysregulation were also consistently present. Importantly, experimental context played a role in revealing such differences. The evidence is discussed with regard to important methodological factors and implications for future research are described. (PsycInfo Database Record (c) 2021 APA, all rights reserved) (Source: journal abstract)
    • Levels of anxiety and sources of stress in adults with autism

      Gillott, Alinda (2007)
      Clinical reports suggest that anxiety is a pertinent issue for adults with autism. We compared 34 adults with autism with 20 adults with intellectual disabilities, utilizing informant-based measures of anxiety and stress. Groups were matched by age, gender and intellectual ability. Adults with autism were almost three times more anxious than the comparison group and gained significantly higher scores on the anxiety subscales of panic and agoraphobia, separation anxiety, obsessive-compulsive disorder and generalized anxiety disorder. In terms of sources of stress, significant differences between the two groups were also found, and stress was found to correlate with high anxiety levels for the autism group, particularly the ability to cope with change, anticipation, sensory stimuli and unpleasant events. That is, the more anxious the individual with autism, the less likely they were able to cope with these demands. This has important implications for clinicians in terms of both assessment and treatment.;
    • Mitochondrial aspartate/glutamate carrier SLC25A12 and autism spectrum disorder: A meta-analysis

      Cortese, Samuele (2016)
      Mitochondrial dysfunction has been reported to be involved in the pathophysiology of autism spectrum disorder (ASD). Studies investigating the possible association between ASD and polymorphism in SLC25A12, which encodes the mitochondrial aspartate/glutamate carrier, have yielded inconsistent results. We conducted a systematic review and meta-analysis of such studies to elucidate if and which SLC25A12 single nucleotide polymorphisms (SNPs) are associated with ASD. We searched PubMed, Ovid, Web of Science, and ERIC databases through September 20th, 2014. Odds ratios (ORs) were aggregated using random effect models. Sensitivity analyses were conducted based on study design (family-based or case-control). Fifteen out of 79 non-duplicate records were retained for qualitative synthesis. We pooled 10 datasets from 9 studies with 2001 families, 735 individuals with ASD and 632 typically developing (TD) individuals for the meta-analysis of rs2292813, as well as 11 datasets from 10 studies with 2016 families, 852 individuals with ASD and 1058 TD individuals for the meta-analysis of rs2056202. We found a statistically significant association between ASD and variant in rs2292813 (OR=1.190, 95% CI 1.052-1.346, P=0.006) as well as in rs2056202 (OR=1.206, 95% CI 1.035-1.405, P=0.016). Sensitivity analyses including only studies with family-based design demonstrated significant association between ASD and polymorphism in rs2292813 (OR=1.216, 95% CI 1.075-1.376, P=0.002) and rs2056202 (OR=1.267, 95% CI 1.041-1.542, P=0.018). In contrast, sensitivity analyses including case-control design studies only failed to find a significant association. Further research on the role of SLC25A12 and ASD may pave the way for potential innovative therapeutic interventions.
    • Neural bases of atypical emotional face processing in autism: A meta-analysis of fMRI studies

      Cortese, Samuele (2015)
      Objectives. We aim to outline the neural correlates of atypical emotional face processing in individuals with ASD. Methods. A comprehensive literature search was conducted through electronic databases to identify functional magnetic resonance imaging (fMRI) studies of whole brain analysis with emotional-face processing tasks in individuals with ASD. The Signed Differential Mapping with random effects model was used to conduct meta-analyses. Identified fMRI studies were further divided into sub-groups based on contrast ("emotional-face vs. non-emotional-face" or "emotional-face vs. non-face") to confirm the results of a meta-analysis of the whole studies. Results. Thirteen studies with 226 individuals with ASD and 251 typically developing people were identified. We found ASD-related hyperactivation in subcortical structures, including bilateral thalamus, bilateral caudate, and right precuneus, and ASD-related hypoactivation in the hypothalamus during emotional-face processing. Sub-analyses with more homogeneous contrasts preserved the findings of the main analysis such as hyperactivation in sub-cortical structure. Jackknife analyses showed that hyperactivation of the left caudate was the most robust finding. Conclusions. Abnormalities in the subcortical structures, such as amygdala, hypothalamus and basal ganglia, are associated with atypical emotional-face processing in individuals with ASD. Copyright © 2014 Informa Healthcare.