The COVID-19 restrictions are described from my standpoint with my mother living in residential care. I argue that restrictions have saved my mother’s body, through destroying her mental capacity. The unstated assumption – live bodies justify sacrificed minds – are voiced. Her quality of life remains at an all-time low, with her body preserved only through the sapping of life’s relevance through a drastic reduction in meaningful contact with her family and loved ones. I believe that my mother never would have wished to be kept alive at this cost, but, unfortunately, she no longer has capacity to discuss such issues.

Influenced by theories of intersectionality, performativity and gender hegemony, this review sought to explore the intersection of autism and gender in qualitative research into autistic identity. Twelve papers were subjected to a thematic metasynthesis following a systematic search. Study participants were predominantly cisgender female or gender-diverse: perspectives of cisgender autistic males were lacking. The three superordinate themes developed related to: (1) the ways in which autism discourses restricted gender identities, through the influence of the “extreme male brain” and “masking” narratives and the use of autism to explain gender non-conformity and gender diversity; (2) the ways in which gendered autistic identities were positioned within social power hierarchies as “othered”, subordinate and less acceptable ways of being; and (3) possibilities for finding spaces of belonging and resistance. While autism as an identity may offer community and freedom from normative expectations, dominant autism discourses act to restrict and police gender, reinforcing existing power hierarchies. We encourage practitioners to reflect on the clinical, ethical and political implications of their positioning in relation to the constructs of “autism” and “gender”, and to explore alongside people seeking support the personal and political impacts of gendered autism discourses.

BACKGROUND: Autism spectrum disorder is a diagnosis that is increasingly applied; however, previous studies have conflicting findings whether rates of diagnosis rates continue to grow in the UK. This study tested whether the proportion of people receiving a new autism diagnosis has been increasing over a twenty-year period, both overall and by subgroups. METHOD: Population-based study utilizing the Clinical Practice Research Datalink (CPRD) primary care database, which contains patients registered with practices contributing data to the CPRD between 1998 and 2018 (N = 6,786,212 in 1998 to N = 9,594,598 in 2018). 65,665 patients had a diagnosis of autism recorded in 2018. Time trend of new (incident) cases of autism diagnosis was plotted for all, and stratified by gender, diagnostic subtypes, and developmental stage: infancy and preschool, 0-5 years old; childhood, 6-11 years old; adolescence, 12-19 years old; adults, over 19 years old. RESULTS: There was a 787%, exponential increase in recorded incidence of autism diagnoses between 1998 and 2018; R2  = 0.98, exponentiated coefficient = 1.07, 95% CI [1.06, 1.08], p 

The diagnosis of autism can be challenging, particularly if an individual coming for assessment is considered to be near the diagnostic threshold. It is important to understand the experiences and challenges of diagnosis from the perspective of clinicians. In this study, 21 in-depth interviews were conducted with clinicians working in specialist autism assessment teams in adult and children’s services in England. Interviews were recorded and transcripts were analysed thematically. We identified four themes that represented how clinicians were frequently engaged with juggling their own professional understanding of what autism is with other factors such as the results of standardised tests and the views of patients and carers, in the context of limited resources: institutional pressure, making diagnosis make sense, seeing through an autism lens and just tools. The study illuminates the diagnostic process as a socially situated activity. We suggest that an examination of the benefits and drawbacks of assessment services specialising in autism only, the resources they require to operate effectively, and how they operate in the context of wider health services would be appropriate and timely.Lay abstractWhen a child or adult is referred for an autism diagnosis, clinicians from different backgrounds work together to make a diagnostic decision. A few studies have asked clinicians in interview how they feel about diagnosis and what the challenges are. We interviewed clinicians in child and adult assessment services in England, and from different professional backgrounds, about the challenges of autism diagnosis and the factors that might influence the assessment process. We found that there were a number of challenges in autism diagnosis, especially when someone coming for diagnosis was considered to be near the diagnostic threshold. Clinicians told us that making a diagnosis was like creating a ‘narrative’: looking at many different factors that told a story about a person, rather than just looking at the results of diagnostic tests. Clinicians do not always agree with the results of those tests and have to use their specialist clinical judgement to make decisions. Clinicians were concerned about the amount of time people have to wait for an autism assessment, and the resulting pressure on the assessment process. The findings of this work can help us to understand how diagnosis happens and consider ways in which it can be improved for adults, children and families coming for assessment, as well as clinicians.

Diagnosis of autism in the UK is generally made within a multidisciplinary team setting and is primarily based on observation and clinical interview. We examined how clinicians diagnose autism in practice by observing post-assessment meetings in specialist autism teams. Eighteen meetings across four teams based in the south of England and covering 88 cases were audio-recorded, transcribed and analysed using thematic analysis. We drew out two themes, related to the way in which clinicians expressed their specialist disciplinary knowledge to come to diagnostic consensus: Feeling Autism in the Encounter; and Evaluating Testimonies of Non-present Actors. We show how clinicians produce objective accounts through their situated practices and perform diagnosis as an act of interpretation, affect and evaluation to meet the institutional demands of the diagnostic setting. Our study contributes to our understanding of how diagnosis is accomplished in practice.

Evidence suggests disclosing an autism diagnosis is associated with reduced stigmatization for autistic adults. However, it is unknown whether this is true for autistic adolescents. We used a vignette-and-questionnaire design to study stigmatizing attitudes with adolescents (aged 11-12 and 14-16 years, total N = 250) in a UK school. We investigated the effect of disclosing that a fictional adolescent had an autism diagnosis on stigmatizing attitudes of peers by testing the effect of disclosure of diagnosis on the social and emotional distance pupils wanted to maintain from the autistic adolescent. We also tested the effect of disclosure on peers' assessment of the adolescent's responsibility for their own behaviour. We checked to see if the effects were moderated by gender and age-group. Disclosing autism did not affect the social and emotional distance peers wanted to maintain from the autistic adolescent, but was associated with significant reduction in personal responsibility attributed to the adolescent's behaviour. Boys attributed more personal responsibility to the autistic adolescent than girls, but this gender effect was reduced when autism was disclosed. These findings suggest that disclosing autism to other pupils may be of limited use in reducing stigmatization by peers in UK schools.

There is little research exploring educational practitioners’ experiences of working with children with attention deficit/hyperactivity disorder (ADHD). The current study aimed to understand educational practitioners’ beliefs concerning the home lives of children with ADHD, and how they perceive that home lives affect children’s behaviour in school. Forty-two practitioners from primary, secondary and pupil referral schools participated in focus groups or interviews. Thematic analysis was used to identify themes arising from the data. Three themes emerged as relevant to beliefs about the home lives of children with ADHD: inconsistency, psychosocial adversity and isolation. Educational practitioners relate their experiences of working with children to what they believe occurs at home. On the basis of these findings, we make recommendations for strategies that school practitioners can use when working with children with ADHD.

Background: Current global estimates suggest the proportion of the population with autism spectrum disorder (ASD) who have intellectual disability (ID) is approximately 50%. Our objective was to ascertain the existence of selection bias due to under-inclusion of populations with ID across all fields of autism research. A sub-goal was to evaluate inconsistencies in reporting of findings. Methods: This review covers all original research published in 2016 in autism-specific journals with an impact factor greater than 3. Across 301 included studies, 100,245 participants had ASD. A random effects meta-analysis was used to estimate the proportion of participants without ID. Selection bias was defined as where more than 75% of participants did not have ID. Results: Meta-analysis estimated 94% of all participants identified as being on the autism spectrum in the studies reviewed did not have ID (95% CI 0.91-0.97). Eight out of ten studies demonstrated selection bias against participants with ID. The reporting of participant characteristics was generally poor: information about participants' intellectual ability was absent in 38% of studies (n = 114). Where there was selection bias on ID, only 31% of studies mentioned lack of generalisability as a limitation. Conclusions: We found selection bias against ID throughout all fields of autism research. We recommend transparent reporting about ID and strategies for inclusion for this much marginalised group.

We aimed to explore the levels of agreement about the diagnoses of Autistic Spectrum Conditions between the referrer, CAMHS practitioner and a research diagnosis, as well as the stability of the practitioner’s diagnosis over time in a secondary analysis of data from 302 children attending two Child and Adolescent Mental Health Services over two years. Kappa coefficient was used to assess the agreement between the referrer and research diagnosis. Kendall’s tau b coefficient was used to assess the agreement between the practitioner and the research diagnosis assigned using the Development and Well-Being Assessment, as well as the agreement between the referrer’s indication of presenting problems and the practitioner diagnosis. Diagnostic stability was explored in children with and without a research diagnosis of Autistic Spectrum Condition. There was a moderate level of agreement between the referrer and research diagnosis (Kappa = 0.51) and between practitioner’s and research diagnosis (Kendall’s tau = 0.60) at baseline, which reduced over the subsequent two years. Agreement between the referrer and practitioner’s diagnosis at baseline was fair (Kendall’s tau = 0.36).The greatest diagnostic instability occurred among children who practitioners considered to have possible Autistic Spectrum Conditions but who did not meet research diagnostic criteria. Further studies could explore the approaches used by practitioners to reach diagnoses and the impact these may have on diagnostic stability in Autistic Spectrum Conditions. Standardised assessment using a clinically rated diagnostic framework has a potential role as an adjunct to standard clinical care and might be particularly useful where practitioners are uncertain.

‘Stereotyped or repetitive motor movements’ are characterised as core features in the diagnosis of autism, yet many autistic adults (and the neurodiversity movement) have reclaimed them as ‘stimming’. Supported by a growing body of scientific research, autistic adults argue that these behaviours may serve as useful coping mechanisms, yet little research has examined stimming from the perspective of autistic adults. Through interviews and focus groups, we asked 32 autistic adults to share their perceptions and experiences of stimming, including the reasons they stim, any value doing so may hold for them and their perceptions of others’ reactions to stimming. Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.

Background: Research suggests that diagnostic procedures for Autism Spectrum Disorder are not consistent across practice and that diagnostic rates can be affected by contextual and social drivers. The purpose of this review was to consider how the content of clinical practice guidelines shapes diagnoses of Autism Spectrum Disorder in the UK; and investigate where, within those guidelines, social factors and influences are considered. Methods: We electronically searched multiple databases (NICE Evidence Base; TRIP; Social Policy and Practice; US National Guidelines Clearinghouse; HMIC; the Cochrane Library; Embase; Global health; Ovid; PsychARTICLES; PsychINFO) and relevant web sources (government, professional and regional NHS websites) for clinical practice guidelines. We extracted details of key diagnostic elements such as assessment process and diagnostic tools. A qualitative narrative analysis was conducted to identify social factors and influences. Results: Twenty-one documents were found and analysed. Guidelines varied in recommendations for use of diagnostic tools and assessment procedures. Although multidisciplinary assessment was identified as the 'ideal' assessment, some guidelines suggested in practice one experienced healthcare professional was sufficient. Social factors in operational, interactional and contextual areas added complexity to guidelines but there were few concrete recommendations as to how these factors should be operationalized for best diagnostic outcomes. Conclusion: Although individual guidelines appeared to present a coherent and systematic assessment process, they varied enough in their recommendations to make the choices available to healthcare professionals particularly complex and confusing. We recommend a more explicit acknowledgement of social factors in clinical practice guidelines with advice about how they should be managed and operationalised to enable more consistency of practice and transparency for those coming for diagnosis.

BACKGROUND: in the last 2 decades, several studies have examined the association between maternal thyroid hormone insufficiency during pregnancy and neurodevelopmental disorders in children and shown conflicting results. AIM: This systematic review aimed to assess the evidence for an association between maternal thyroid hormone insufficiency during pregnancy and neurodevelopmental disorders in children. We also sought to assess whether levothyroxine treatment for maternal thyroid hormone insufficiency improves child neurodevelopment outcomes. METHODS: We performed systematic literature searches in MEDLINE, EMBASE, PSYCinfo, CINAHL, AMED, BNI, Cochrane, Scopus, Web of Science, GreyLit, Grey Source and Open Grey (latest search: March 2017). We also conducted targeted web searching and performed forwards and backwards citation chasing. Meta-analyses of eligible studies were carried out using the random-effects model. RESULTS: We identified 39 eligible articles (37 observational studies and 2 randomized controlled trials [RCT]). Meta-analysis showed that maternal subclinical hypothyroidism and hypothyroxinaemia are associated with indicators of intellectual disability in offspring (odds ratio [OR] 2.14, 95% confidence interval [CI] 1.20 to 3.83, P = .01, and OR 1.63, 95% CI 1.03 to 2.56, P = .04, respectively). Maternal subclinical hypothyroidism and hypothyroxinaemia were not associated with attention deficit hyperactivity disorder, and their effect on the risk of autism in offspring was unclear. Meta-analysis of RCTs showed no evidence that levothyroxine treatment for maternal hypothyroxinaemia or subclinical hypothyroidism reduces the incidence of low intelligence quotient in offspring. LIMITATIONS: Although studies were generally of good quality, there was evidence of heterogeneity between the included observational studies (I2 72%-79%). CONCLUSION: Maternal hypothyroxinaemia and subclinical hypothyroidism may be associated with intellectual disability in offspring. Currently, there is no evidence that levothyroxine treatment, when initiated 8- to 20-week gestation (mostly between 12 and 17 weeks), for mild maternal thyroid hormone insufficiency during pregnancy reduces intellectual disability in offspring.

© 2015, Springer Science+Business Media New York. This systematic review examines associations between parental socioeconomic disadvantage and childhood attention deficit/hyperactivity disorder (ADHD). Socioeconomic status (SES) was measured by parental income, education, occupation and marital status. Results were mixed by measure of SES with no one aspect being differentially related to ADHD. 42 studies were included in the review, of which 35 found a significant univariate association between socioeconomic disadvantage and ADHD. Meta-analyses of dimensions of SES and. their association with ADHD indicate that children in families of low SES are on average 1.85–2.21 more likely to have ADHD than their peers in high SES families. In spite of substantial between-study heterogeneity, there is evidence for an association between socioeconomic disadvantage and risk of ADHD measured in different ways. This is likely mediated by factors linked to low SES such as parental mental health and maternal smoking during pregnancy.

This study aimed to examine the association between specific word reading difficulties (SWRD) identified at age 7 years using a discrepancy approach and subsequent dimensional measures of behavioural difficulties reported by teachers and parents at age 11 years. Behavioural problems were assessed using the Strengths and Difficulties Questionnaire. Secondary analysis of a UK representative population-based sample of children (n = 12,631) was conducted using linear regression models. There were 284 children (2.2%) identified with SWRD at age 7 years. Children with SWRD had significantly higher scores on all measures of behavioural difficulties in unadjusted analysis. SWRD was associated with elevated behavioural difficulties at age 11 years according to parent report, and with greater emotional problems, hyperactivity and conduct issues according to teachers, even after having controlled for baseline difficulties. These results were replicated for children with low reading attainment, but no cognitive ability discrepancy. Categories of special educational need into which children with SWRD were classed at school were varied. Given high rates of co-occurring behavioural difficulties, assessment that identifies each individual child's specific functional, rather than categorical, difficulties is likely to be the most effective way of providing classroom support.

This study aimed to examine the association between specific word reading difficulties (SWRD) identified at age 7-years using a discrepancy approach and subsequent dimensional measures of behavioural difficulties reported by teachers and parents at age 11-years. Behavioural problems were assessed using the Strengths and Difficulties Questionnaire. Secondary analysis of a UK representative population-based sample of children (n-=-12-631) was conducted using linear regression models. There were 284 children (2.2%) identified with SWRD at age 7-years. Children with SWRD had significantly higher scores on all measures of behavioural difficulties in unadjusted analysis. SWRD was associated with elevated behavioural difficulties at age 11-years according to parent report, and with greater emotional problems, hyperactivity and conduct issues according to teachers, even after having controlled for baseline difficulties. These results were replicated for children with low reading attainment, but no cognitive ability discrepancy. Categories of special educational need into which children with SWRD were classed at school were varied. Given high rates of co-occurring behavioural difficulties, assessment that identifies each individual child's specific functional, rather than categorical, difficulties is likely to be the most effective way of providing classroom support.

BACKGROUND: Children from disadvantaged socioeconomic backgrounds are at greater risk of a range of negative outcomes throughout their life course than their peers; however the specific mechanisms by which socioeconomic status relates to different health outcomes in childhood are as yet unclear. AIMS: the current study investigates the relationship between socioeconomic disadvantage in childhood and attention deficit/hyperactivity disorder (ADHD), and investigates putative mediators of this association in a longitudinal population-based birth cohort in the UK. METHODS: Data from the Avon Longitudinal Study of Parents and Children was used (n = 8,132) to explore the relationship between different measures of socioeconomic status at birth-3 years and their association with a diagnosis of ADHD at age 7. A multiple mediation model was utilised to examine factors occurring between these ages that may mediate the association. RESULTS: Financial difficulties, housing tenure, maternal age at birth of child and marital status were significantly associated with an outcome of ADHD, such that families either living in financial difficulty, living in council housing, with younger or single mothers' were more likely to have a child with a research diagnosis of ADHD at age 7. Financial difficulties was the strongest predictor of ADHD (OR 2.23 95% CI 1.57-3.16). In the multiple mediation model, involvement in parenting at age 6 and presence of adversity at age 2-4 mediated 27.8% of the association. CONCLUSIONS: Socioeconomic disadvantage, conceptualised as reported difficulty in affording basic necessities (e.g. heating, food) has both direct and indirect impacts on a child's risk of ADHD. Lower levels of parent involvement mediates this association, as does presence of adversity; with children exposed to adversity and those with less involved parents being at an increased risk of having ADHD. This study highlights the importance of home and environmental factors as small but important contributors toward the aetiology of ADHD.

Retrospective recall about children's symptoms is used to establish early developmental patterns in clinical practice and is also utilised in child psychopathology research. Some studies have indicated that the accuracy of retrospective recall is influenced by life events. Our hypothesis was that an intervention: speech and language therapy, would adversely affect the accuracy of parent recall of early concerns about their child's speech and language development. Mothers (n∈=∈5,390) reported on their child's speech development (child male to female ratio = 50:50) when their children were aged 18 or 30 months, and also reported on these early concerns retrospectively, 10 years later, when their children were 13 years old. Overall reliability of retrospective recall was good, 86 % of respondents accurately recalling their earlier concerns. As hypothesised, however, the speech and language intervention was strongly associated with inaccurate retrospective recall about concerns in the early years (Relative Risk Ratio = 19.03; 95 % CI:14.78-24.48). Attendance at speech therapy was associated with increased recall of concerns that were not reported at the time. The study suggests caution is required when interpreting retrospective reports of abnormal child development as recall may be influenced by intervening events. © 2013 Springer Science+Business Media New York.

The UK prevalence of parent-reported autism spectrum disorder (ASD) and attention deficit/hyperactivity disorder (ADHD) were estimated from the Millennium Cohort Study. Case definition was if a doctor or health care professional had ever told parents that their child had ASD and/or ADHD. Data were collected in 2008/2009 for 14,043 children. 1.7 % of children were reported as having ASD (95 % CI 1.4-2.0) at mean age 7.2 years (SD = 0.2; range = 6.3-8.2). 1.4 % reportedly had ADHD (95 % CI 1.2-1.7), and 0.3 % had both ASD and ADHD (95 % CI 0.2-0.5). After adjusting for socio-economic disadvantage, only male sex (p 

Background: Studies throughout Northern Europe, the United States and Australia have found an association between childhood attention deficit hyperactivity disorder (ADHD) and family socioeconomic disadvantage. We report further evidence for the association and review potential causal pathways that might explain the link. Method: Secondary analysis of a UK birth cohort (the Millennium Cohort Study, N = 19,519) was used to model the association of ADHD with socioeconomic disadvantage and assess evidence for several potential explanatory pathways. The case definition of ADHD was a parent-report of whether ADHD had been identified by a medical doctor or health professional when children were 7 years old. Results: ADHD was associated with a range of indicators of social and economic disadvantage including poverty, housing tenure, maternal education, income, lone parenthood and younger motherhood. There was no evidence to suggest childhood ADHD was a causal factor of socioeconomic disadvantage: income did not decrease for parents of children with ADHD compared to controls over the 7-year study period. No clinical bias towards labelling ADHD in low SES groups was detected. There was evidence to suggest that parent attachment/family conflict mediated the relationship between ADHD and SES. Conclusion: Although genetic and neurological determinants may be the primary predictors of difficulties with activity level and attention, aetiology appears to be influenced by socioeconomic situation. © 2013 the Authors Journal of Child Psychology and Psychiatry published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.

BACKGROUND: Studies throughout Northern Europe, the United States and Australia have found an association between childhood attention deficit hyperactivity disorder (ADHD) and family socioeconomic disadvantage. We report further evidence for the association and review potential causal pathways that might explain the link. METHOD: Secondary analysis of a UK birth cohort (the Millennium Cohort Study, N = 19,519) was used to model the association of ADHD with socioeconomic disadvantage and assess evidence for several potential explanatory pathways. The case definition of ADHD was a parent-report of whether ADHD had been identified by a medical doctor or health professional when children were 7 years old. RESULTS: ADHD was associated with a range of indicators of social and economic disadvantage including poverty, housing tenure, maternal education, income, lone parenthood and younger motherhood. There was no evidence to suggest childhood ADHD was a causal factor of socioeconomic disadvantage: income did not decrease for parents of children with ADHD compared to controls over the 7-year study period. No clinical bias towards labelling ADHD in low SES groups was detected. There was evidence to suggest that parent attachment/family conflict mediated the relationship between ADHD and SES. CONCLUSION: Although genetic and neurological determinants may be the primary predictors of difficulties with activity level and attention, aetiology appears to be influenced by socioeconomic situation.

In this journal, Holden, Jenkins-Jones, Poole, Morgan, Coghill and Currie , CAPMH 7:34, 2013, report on the prevalence and financial costs of treating people with attention deficit hyperactivity disorder (ADHD) in the UK over the last ten years. We commend the authors on their thorough cost analysis, and discuss differences in prevalence estimates of diagnosed ADHD, that is the proportion of the child population with an ADHD diagnosis, which varies dramatically between studies. We also discuss the reasons for this. Regional variation in application of diagnostic criteria and clinical subjectivity are likely partial explanations.

Jutel and Nettleton (2011) discuss diagnosis as not only a major classification tool for medicine but also an interactive social process that itself may have ramifications for health. Consideration of diagnosis as a social determinant of health outcomes led to the formulation of our research question: can we detect a change in the development of prosocial symptoms before and after an Autism Spectrum Disorder (ASD) diagnosis? We examined the developmental trajectory of prosocial skills of children, as impairment in social skills is given as a core symptom for children with ASD. We used a validated scale measuring prosocial behaviour for a sample of 57 children where the measure was repeatedly recorded over ten years. We plotted the developmental trajectory of the prosocial trait in this sample who were enrolled in a longitudinal birth cohort study based in South West England. Multi-factorial fixed effect modelling suggests that the developmental trajectory of this measure of behaviour was not significantly altered by ASD diagnosis, or the consequences of diagnosis, either for better or worse. Further analysis was conducted on a subset of 33 of the children who had both pre-diagnosis and post-diagnosis information, and the same result obtained. The results indicate that prosocial behaviours may be resistant to typical 'treatments': provision of educational and specialist health services triggered by a clinical ASD diagnosis. The implications of this for considering diagnosis as a social determinant are discussed. © 2012 Elsevier Ltd.

OBJECTIVE:   to compare social and behavioural outcomes between children formally diagnosed with autism spectrum disorders (ASD) with those of children who displayed autistic traits at preschool age, but remained undiagnosed as teenagers. METHOD:   a secondary analysis of data from a birth cohort study, the Avon Longitudinal Study of Parents and Children (N = 13,944), in SW England. Children clinically diagnosed with ASD were identified from their medical records (n = 71). A comparison group, who displayed autistic traits at age 3-4, but without ASD diagnosis were also identified (n = 142). Social and behavioural outcomes in adolescence were compared between the two groups. RESULTS:   Children with ASD diagnoses were more impaired as teenagers that those in the comparison group on a range of measures of autistic-like behaviour. The developmental trajectory of prosocial behaviour showed that differences between the case and comparison groups increased dramatically in the preschool and early primary years, but that after 6 years the trajectories were similar. CONCLUSIONS:   the divergence of the clinically diagnosed group and the nondiagnosed group in measures of autistic-like behaviour increased with age. This study provides evidence that it may be difficult to distinguish preschool age children who exhibit autistic-like symptoms but improve, from those who go on to develop lifelong impairment.

Davison, Frankel, and Davey Smith (1989) conceptualised lay epidemiology as the process of interpreting health risks through considering non-traditional sources of information drawn from personal networks and from the public arena. We analysed 100 unsolicited letters received by professional epidemiologists studying the causes of autistic spectrum disorders (ASD). The correspondents sourced their ideas from an interaction between personal, social, media, and scientific sources, as well as conducting their own studies. Thus their correspondence represented a form of lay epidemiology in action, and as such provides a useful pointer to how 'lay expertise' may be harnessed in practice. The vast majority of the letters put forward theories and hypotheses about hazards related to early twenty-first century society, either medical technologies, unavoidable by-products of technology, or risks created by modern lifestyles. Given the conclusions of previous studies a surprisingly small minority put forward causes related to vaccines. This disparity is discussed. The findings shed light on the nature of public trust of institutions involved in the definition of risk. They underline the strength of public concern not just about vaccines, but more widely about risks of modern society and technology causing childhood disorders. © 2011 Taylor & Francis.

PURPOSE: Recent studies in epidemiology have highlighted the existence of children with autistic difficulties who remain undiagnosed. Other studies have identified 'access barriers' to clinics which include factors mediated by parents as well as health and education services. The purpose of this study was to examine whether social and demographic factors play a role in receiving a diagnosis of autistic spectrum disorder (ASD) independently of symptom severity. METHODS: Retrospective secondary analysis of a longitudinal UK cohort study, namely, the Avon Longitudinal Study of Parents and Children (ALSPAC). RESULTS: with the severity of autistic traits held constant, boys were more likely to receive an ASD diagnosis than girls. Younger mothers and mothers of first-born children were significantly less likely to have children diagnosed with ASD. Maternal depression before and around the time of their children's autistic difficulties was associated with lack of diagnosis. CONCLUSIONS: the study provides evidence that social as well as biological factors can influence whether children are brought to the clinic.

Introduction. There has been a dramatic increase in the prevalence of autistic spectrum disorders
(ASD) in the last 20 years. The reasons for this are disputed. The consensus among epidemiologists
and other experts is that greater case load is due to changes in diagnostic practice rather than
reflecting changing aetiological factors leading to a true increase in incidence.
We set out to examine lay views concerning the aetiology and prevalence of ASD and whether they conflict with or support this consensus position.
Methods over 100 unsolicited communications (letters e mails and several telephone calls) were received by a UK epidemiological study of ASD. We carried out a qualitative analysis of all correspondence in order to examine spontaneously expressed lay beliefs about the prevalence and aetiology of ASD.
Results. The majority of correspondents suggested theories about environmental causes of ASD.
This study demonstrates the strength of lay belief that the true incidence of autism is rising, and this is due to risks from modern technologies and changing lifestyles.
Conclusion. This study based on unsolicited data highlights the contrast between lay explanations
of increasing prevalence and the consensus opinion of medical experts. It also demonstrates how many people in direct contact with ASD have important information to share.

INTRODUCTION: There has been a dramatic increase in the prevalence of autistic spectrum disorders (ASD) in the last 20 years. The reasons for this are disputed. The consensus among epidemiologists and other experts is that greater case load is due to changes in diagnostic practice rather than reflecting changing aetiological factors leading to a true increase in incidence. We set out to examine lay views concerning the aetiology and prevalence of ASD and whether they conflict with or support this consensus position. METHODS: over 100 unsolicited communications (letters e-mail and several telephone calls) were received by a UK epidemiological study of ASD. We carried out a qualitative analysis of all correspondence in order to examine spontaneously expressed lay beliefs about the prevalence and aetiology of ASD. RESULTS: the majority of correspondents suggested theories about environmental causes of ASD. This study demonstrates the strength of lay belief that the true incidence of autism is rising, and this is due to risks from modern technologies and changing lifestyles. CONCLUSION: This study based on unsolicited data highlights the contrast between lay explanations of increasing prevalence and the consensus opinion of medical experts. It also demonstrates how many people in direct contact with ASD have important information to share.

BACKGROUND: Data from epidemiology have consistently highlighted a disparity between the true prevalence of childhood psychiatric disorders and their recognition as defined by receiving a clinical diagnosis. Few studies have looked specifically at the level of unidentified autistic spectrum disorder (ASD) in the population. METHOD: Logistic regression was used to determine the behavioural traits associated with receiving a diagnosis of ASD using data from the Avon Longitudinal Study of Parents and Children (ALSPAC). A composite score was derived to measure levels of autistic traits; undiagnosed children with scores matching those diagnosed with ASD were identified. Levels of educational provision beyond that provided by standard schooling were examined. RESULTS: Fifty-five percent of children with autistic traits at the same levels as those who had an autism diagnosis had not been identified as needing extra support from education or specialised health services. of those who were identified as having special needs, 37.5% had been formally diagnosed with an ASD. For children with impairment at the same level as that associated with Asperger's syndrome, 57% had no special provision at school, and were not accessing specialised health services. Twenty-six percent of those who did have special provision at school had an ASD diagnosis. CONCLUSIONS: the results suggest that there may be a substantial proportion of children on the autistic spectrum who are never identified by services.