Publications by authors named "Rosa A Hoekstra"

40 Publications

Evaluating the latent structure of the non-social domain of autism in autistic adults.

Mol Autism 2021 03 3;12(1):22. Epub 2021 Mar 3.

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

Background: The social domain of autism has been studied in depth, but the relationship between the non-social traits of autism has received less attention. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) outlines four criteria that make up the non-social domain including repetitive motor movements, insistence on sameness, restricted interests and sensory sensitivity. There is a lack of research into the relationship between these four criteria. This study aimed to evaluate the relationship between the non-social traits of autism in a large sample of autistic adults. It explored whether these traits are best conceptualised as four distinct factors, or exist along a single dimension.

Methods: Participants included autistic adults from the Netherlands Autism Register. The four components identified within the DSM-5 non-social domain were measured by items from the Adult Routines Inventory, the Autism Spectrum Quotient short and the Sensory Perception Quotient short. Confirmatory factor analysis, as well as exploratory factor analysis and exploratory structural equation modelling, was implemented to examine the relationship between these four criteria.

Results: Results indicated that a four-factor model provided the best fit, mapping onto the DSM-5 criteria. These four factors were moderately correlated, suggesting that four distinct, yet related factors best describe the non-social domain of autism. The one-factor model did not provide a good fit, highlighting that the non-social domain of autism is not a unitary construct.

Limitations: The study included autistic adults who were cognitively able to complete the self-report measures. This may limit the generalisability of the findings to those who are less able to do so.

Conclusions: This study provided evidence for the multidimensional nature of the non-social domain of autism. Given only two of the four criteria within the non-social domain need to be endorsed for a diagnosis of autism, there is room for substantial variation across individuals, who will have a unique profile within the non-social domain. The results have implications for our understanding of the heterogeneous nature of autistic traits, as well as for how we conceptualise autism as a diagnostic category. This is important for the provision of diagnosis and support within research and clinical practice.
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http://dx.doi.org/10.1186/s13229-020-00401-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7931608PMC
March 2021

The Dutch Sensory Perception Quotient-Short in adults with and without autism.

Autism 2020 11 28;24(8):2071-2080. Epub 2020 Jul 28.

Vrije Universiteit Amsterdam, The Netherlands.

Lay Abstract: Individuals on the autism spectrum often experience heightened or reduced sensory sensitivities. This feature was recently added to the diagnostic manual for autism (, 5th ed. (DSM-5)). To measure sensory sensitivities, the Sensory Perception Quotient (SPQ) has been developed. In this study, we tested whether a Dutch translation of the abridged SPQ-Short yields similar results as the original English version. We also tested whether this questionnaire can measure modality specific sensitivities. To this end, 657 adults with autism spectrum disorder and 585 adults without an autism spectrum disorder diagnosis filled out the Dutch SPQ-Short. The Dutch questionnaire data were very similar to the original English version: adults with autism spectrum disorder were more sensitive compared with adults without autism spectrum disorder. Women with autism spectrum disorder are more sensitive compared with men with autism spectrum disorder. Gender did not have an effect in the group without autism spectrum disorder. Individuals reporting higher sensory sensitivities also reported more autistic traits (such as lower social interests, or increased fascination for patterns). Finally, we found that the Dutch SPQ-Short is suited to measure modality-specific sensitivities. We conclude that the Dutch translation is a viable tool to measure sensory sensitivities in adults with and without autism spectrum disorder and can be used to further our understanding of differences in perception in people with or without autism spectrum disorder.
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http://dx.doi.org/10.1177/1362361320942085DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7543020PMC
November 2020

Short report: Social communication difficulties and restricted repetitive behaviors as predictors of anxiety in adults with autism spectrum disorder.

Autism 2020 10 2;24(7):1917-1923. Epub 2020 Jul 2.

University of Technology Sydney, Australia.

Autism spectrum disorder and anxiety are highly comorbid conditions. Understanding the underlying traits of anxiety in autism spectrum disorder is crucial to prevent and treat it efficiently. Hence, this study determined whether social communication difficulties or restricted repetitive behaviors are stronger risk factors for anxiety symptoms in autistic adults in a large cohort. Data on 742 autistic adults from the Netherlands Autism Register were included in the study. Hierarchical regression was implemented to evaluate whether social communication difficulties (Autism-Spectrum Quotient social behavior factor) and restricted repetitive behaviors (Adult Routines Inventory) were predictive of anxiety (Hospital Anxiety and Depression Scale) controlling for age and sex. When considered together, restricted repetitive behaviors stood out as significant positive predictors of anxiety symptoms (lower-order restricted repetitive behaviors,  = 0.32,  < 0.001; higher-order restricted repetitive behaviors,  = 0.15,  = 0.001), whereas social communication difficulties did not ( = 0.06,  = 0.11). Sex did not moderate these associations ( > 0.05). Non-social autistic traits are stronger predictors of anxiety symptoms than social traits in autistic adults. Increased attention to restricted repetitive behaviors should be given to improve current support programs for autistic adults with anxiety and to identify autistic individuals at risk.
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http://dx.doi.org/10.1177/1362361320934218DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7543028PMC
October 2020

Global Burden of Childhood Epilepsy, Intellectual Disability, and Sensory Impairments.

Pediatrics 2020 07 17;146(1). Epub 2020 Jun 17.

International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, United Kingdom.

Background: Estimates of children and adolescents with disabilities worldwide are needed to inform global intervention under the disability-inclusive provisions of the Sustainable Development Goals. We sought to update the most widely reported estimate of 93 million children <15 years with disabilities from the Global Burden of Disease Study 2004.

Methods: We analyzed Global Burden of Disease Study 2017 data on the prevalence of childhood epilepsy, intellectual disability, and vision or hearing loss and on years lived with disability (YLD) derived from systematic reviews, health surveys, hospital and claims databases, cohort studies, and disease-specific registries. Point estimates of the prevalence and YLD and the 95% uncertainty intervals (UIs) around the estimates were assessed.

Results: Globally, 291.2 million (11.2%) of the 2.6 billion children and adolescents (95% UI: 249.9-335.4 million) were estimated to have 1 of the 4 specified disabilities in 2017. The prevalence of these disabilities increased with age from 6.1% among children aged <1 year to 13.9% among adolescents aged 15 to 19 years. A total of 275.2 million (94.5%) lived in low- and middle-income countries, predominantly in South Asia and sub-Saharan Africa. The top 10 countries accounted for 62.3% of all children and adolescents with disabilities. These disabilities accounted for 28.9 million YLD or 19.9% of the overall 145.3 million (95% UI: 106.9-189.7) YLD from all causes among children and adolescents.

Conclusions: The number of children and adolescents with these 4 disabilities is far higher than the 2004 estimate, increases from infancy to adolescence, and accounts for a substantial proportion of all-cause YLD.
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http://dx.doi.org/10.1542/peds.2019-2623DOI Listing
July 2020

Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study.

Soc Sci Med 2020 07 15;256:113034. Epub 2020 May 15.

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

Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and examine the contributing and protective factors for internalised stigma based on the perspectives of the parents themselves. We conducted in-depth interviews with eighteen parents (fourteen mothers, four fathers) in Addis Ababa (between December 25, 2017 and January 8, 2018) and the rural town of Butajira (between August 08, 2018 and August 16, 2018). We analysed the data using thematic analysis. Parents perceived and experienced different forms of stigma that were directed towards their child (public stigma) and themselves (courtesy stigma). Some parents also described how they isolated themselves and their child from social life (affiliate stigma). Parents perceived the negative consequence of stigma on the lives of their child with DD, siblings and themselves. Most parents also described examples of positive reactions and support from their own family and the community. Participants' accounts suggested supportive contributions and positive responses from the general public came primarily from those who had better awareness of DD. Not all parents in our study internalised the stigma that was directed at them. Whilst perceived family support and acceptance and increased awareness about DD appeared to help some parents not to internalise stigma, the perceived lack of social support and acceptance made some parents vulnerable to internalised stigma. These findings can inform anti-stigma intervention priorities. Awareness-raising activities targeting the community as a whole as well as interventions targeting parents themselves are likely to be beneficial. Interventions should consider the wellbeing of the whole family unit rather than focus on individuals alone.
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http://dx.doi.org/10.1016/j.socscimed.2020.113034DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7322556PMC
July 2020

Quotas, and Anti-discrimination Policies Relating to Autism in the EU: Scoping Review and Policy Mapping in Germany, France, Netherlands, United Kingdom, Slovakia, Poland, and Romania.

Autism Res 2020 08 22;13(8):1397-1417. Epub 2020 May 22.

Department of International Health, School CAPHRI Care and Public Health Research Institute, Faculty of Health Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands.

The low employment rates of persons with Autism Spectrum Conditions in the European Union (EU) are partly due to discrimination. Member States have taken different approaches to increase the employment rate in the recent decades, including quota and anti-discrimination legislation, however, the implications for people with autism are unknown. The purpose of this scoping review was to provide a comprehensive overview of the history of these employment policies, from seven EU Member States (Germany, France, the Netherlands, the United Kingdom [prior to exit], Slovakia, Poland, and Romania), exploring the interdependence on international and EU policies, using a path dependency analysis. The results indicate that internationally a shift in focus has taken place in the direction of anti-discrimination law, though employment quotas remained in place in six out of the seven Member States as a means to address employment of people with disability in combination with the new anti-discrimination laws. LAY SUMMARY: Discrimination is partially responsible for the low employment of people with autism. Several approaches have been taken in recent years, such as anti-discrimination laws and setting a mandatory number of people with disabilities that need to be employed. This study finds that, internationally and in the European Union, the focus was initially on the use of quotas and gradually moved to anti-discrimination, with both being used simultaneously. Autism Res 2020, 13: 1397-1417. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc.
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http://dx.doi.org/10.1002/aur.2315DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7496597PMC
August 2020

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe.

Autism Res 2020 07 21;13(7):1029-1050. Epub 2020 Feb 21.

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

Autism research is heavily skewed toward western high-income countries. Culturally appropriate screening and diagnostic instruments for autism are lacking in most low- and middle-income settings where the majority of the global autism population lives. To date, a clear overview of the possible cultural and contextual factors that may affect the process of identifying and diagnosing individuals with autism spectrum disorders (ASD) is missing. This study aims to outline these factors by proposing a conceptual framework. A multidisciplinary review approach was applied to inform the development of the conceptual framework, combining a systematic review of the relevant autism research literature with a wider literature search spanning key texts in global mental health, cultural psychiatry, cross-cultural psychology, and intellectual disability research. The resulting conceptual framework considers the identification, help-seeking, and diagnostic process at four interrelated levels: (a) the expression; (b) recognition; (c) interpretation; and (d) reporting of autism symptoms, and describes the cultural and contextual factors associated with each of these levels, including cultural norms of typical and atypical behavior, culture-specific approaches to parenting, mental health literacy, cultural beliefs, attitudes and stigma, as well as the affordability, availability, accessibility, and acceptability of services. This framework, mapping out the cultural and contextual factors that can affect the identification, help-seeking, and diagnosis of ASD may function as a springboard for the development of culturally appropriate autism screening and diagnostic instruments, and inform future cross-cultural autism research directions. The framework also has relevance for clinicians and policy makers aiming to improve support for underserved autism populations worldwide. Autism Res 2020, 13: 1029-1050. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The vast majority of autism research is conducted in western high-income settings. We therefore know relatively little of how culture and context can affect the identification, help-seeking, and diagnosis of autism across the globe. This study synthesizes what is known from the autism research literature and a broader literature and maps out how culture and context may affect (a) the expression, (b) recognition, (c) interpretation, and (d) reporting of autism symptoms.
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http://dx.doi.org/10.1002/aur.2276DOI Listing
July 2020

Autism and family involvement in the right to education in the EU: policy mapping in the Netherlands, Belgium and Germany.

Mol Autism 2019 9;10:43. Epub 2019 Dec 9.

3Autism Research Centre, Department of Psychiatry, University of Cambridge, 18B Trumpington Road, Douglas House, Cambridge, CB2 8AH UK.

Introduction: In recent years, the universal right to education has been emphasised by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies relevant to special education needs and parental involvement of children with autism at an international level and in the Netherlands, Germany and Belgium.

Methods: A policy path analysis was performed using a scoping review as an underlying methodological framework. This allowed for a rapid gathering of available data from which a timeline of adopted policies was derived.

Results And Discussion: Internationally, the universal right to education has been reinforced repeatedly and the values of the Universal Declaration of Human Rights have been reiterated with every reinforcement. Also, the additional support that a child with special education needs requires is acknowledged and measures are taken to facilitate access to any education for all children. There are slight cross-country differences between the countries under study, attributable to differences in national regulation of education. However, all countries have progressed to a state where the right to education for all children is integrated on a policy level and measures are taken to enable children with special needs to participate in education. Recently, an attempt to implement a form of inclusive education was made as a form of special needs provision. Nevertheless, nowhere has this been implemented successfully yet.

Conclusion: The Universal Declaration of Human Rights was a critical juncture in international policy and created an environment where the universal right to education has been implemented for all children in the countries under study.
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http://dx.doi.org/10.1186/s13229-019-0297-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6902602PMC
June 2020

Adapting and pre-testing the World Health Organization's Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia.

Autism 2020 01 16;24(1):51-63. Epub 2019 May 16.

King's College London, UK.

The World Health Organization's Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child's development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization's Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5). The consultation participants indicated that the Caregiver Skills Training addresses an urgent need and is relevant to the Ethiopian context. Several adaptations were proposed, including more emphasis on psycho-education, stigma, parental feelings of guilt and expectations of a cure. The adapted Caregiver Skills Training was pre-piloted with excellent participation (100%) and retention (90%) rates. Four themes were developed from the qualitative data: (1) Programme acceptability and relevance, (2) Perceived programme benefits, (3) Challenges and barriers and (4) Suggestions for improvement. The World Health Organization's Caregiver Skills Training addresses a local need and, with careful adaptations, is feasible and acceptable to be implemented in Ethiopia. These findings may have relevance to low-resource settings worldwide.
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http://dx.doi.org/10.1177/1362361319848532DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6927066PMC
January 2020

A cross-cultural study of autistic traits across India, Japan and the UK.

Mol Autism 2018 5;9:52. Epub 2018 Nov 5.

1Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.

Background: There is a global need for brief screening instruments that can identify key indicators for autism to support frontline professionals in their referral decision-making. Although a universal set of conditions, there may be subtle differences in expression, identification and reporting of autistic traits across cultures. In order to assess the potential for any measure for cross-cultural screening use, it is important to understand the relative performance of such measures in different cultures. Our study aimed to identify the items on the Autism Spectrum Quotient (AQ)-Child that are most predictive of an autism diagnosis among children aged 4-9 years across samples from India, Japan and the UK.

Methods: We analysed parent-reported AQ-Child data from India (73 children with an autism diagnosis and 81 neurotypical children), Japan (116 children with autism and 190 neurotypical children) and the UK (488 children with autism and 532 neurotypical children). None of the children had a reported existing diagnosis of intellectual disability. Discrimination indices (DI) and positive predictive values (PPV) were used to identify the most predictive items in each country.

Results: Sixteen items in the Indian sample, 15 items in the Japanese sample and 28 items in the UK sample demonstrated excellent discriminatory power (DI ≥ 0.5 and PPV ≥ 0.7), suggesting these items represent the strongest indicators for predicting an autism diagnosis within these countries. Across cultures, good performing items were largely overlapping, with five key indicator items appearing across all three countries (can easily keep track of several different people's conversations, enjoys social chit-chat, knows how to tell if someone listening to him/her is getting bored, good at social chit-chat, finds it difficult to work out people's intentions). Four items indicated potential cultural differences. One item was highly discriminative in Japan but poorly discriminative (DI < 0.3) in the UK and India, and a further item had excellent discrimination properties in the UK but poorly discriminated in the Indian and Japanese samples. Two additional items were highly discriminative in two cultures but poor in the third.

Conclusions: Cross-cultural overlap in the items most predictive of an autism diagnosis supports the general notion of universality in autistic traits whilst also highlighting that there can be cultural differences associated with certain autistic traits. These findings have the potential to inform the development of a brief global screening tool for autism. Further development and evaluation work is needed.
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http://dx.doi.org/10.1186/s13229-018-0235-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6217788PMC
December 2018

Nothing about us without us: the importance of local collaboration and engagement in the global study of autism.

BJPsych Int 2018 May;15(2):40-43

Founder and director of Joy Autism Center, Addis Ababa, Ethiopia.

Our current understanding of autism and other developmental disorders is primarily based on research conducted in high-income countries, predominantly in North America and Europe. Even within high-income countries, White participants are overrepresented in autism research. There is now increased recognition that a more global and diverse research representation is warranted. This paper argues that in order for global and diverse research efforts to be effective, it is essential to collaborate and engage with local experts and stakeholders, including local researchers, clinicians and representatives from governmental and non-governmental organisations. Such collaborations ensure that studies use culturally appropriate methods and materials, and that research findings are interpreted taking local context into account. Ultimately, these collaborations build local capacity and foster the development of culturally and contextually appropriate interventions that address locally perceived needs. The adage 'nothing about us without us' is vital to global autism research.
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http://dx.doi.org/10.1192/bji.2017.26DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6020913PMC
May 2018

Special interests and subjective wellbeing in autistic adults.

Autism Res 2018 05 10;11(5):766-775. Epub 2018 Feb 10.

Vrije Universiteit Amsterdam, The Netherlands.

Special interests form part of the core features of autism. However, to date there has been limited research focusing on the role of special interests in the lives of autistic adults. This study surveyed autistic adults on their special interest topics, intensity, and motivation. It also assessed the relationship between special interests and a range of quality of life measures including subjective wellbeing and domain specific life satisfaction. About two thirds of the sample reported having a special interest, with relatively more males reporting a special interest than females. Special interest topics included computers, autism, music, nature and gardening. Most autistic adults engaged in more than one special interest, highlighting that these interests may not be as narrow as previously described. There were no differences in subjective wellbeing between autistic adults with and without special interests. However, for autistic adults who did have special interests, motivation for engaging in special interests was associated with increased subjective wellbeing. This indicates that motivation may play an important role in our understanding of special interests in autism. Special interests had a positive impact on autistic adults and were associated with higher subjective wellbeing and satisfaction across specific life domains including social contact and leisure. However, a very high intensity of engagement with special interests was negatively related to wellbeing. Combined, these findings have important implications for the role of special interests in the lives of autistic adults. Autism Res 2018, 11: 766-775. © 2018 International Society for Autism Research, Wiley Periodicals, Inc.

Lay Summary: Autistic adults reported having special interests in a range of topics, including computers, music, autism, nature and gardening. Special interests were associated with a number of positive outcomes for autistic adults. They were also related to subjective wellbeing and satisfaction across specific life domains including social contact and leisure. Very high intensity of engagement with special interests was related to lower levels of wellbeing. This highlights the important role that special interests play in the lives of autistic adults.
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http://dx.doi.org/10.1002/aur.1931DOI Listing
May 2018

Ethiopian community health workers' beliefs and attitudes towards children with autism: Impact of a brief training intervention.

Autism 2019 01 25;23(1):39-49. Epub 2017 Sep 25.

King's College London, UK.

There is a severe shortage of services for children with autism in Ethiopia; access to services is further impeded by negative beliefs and stigmatising attitudes towards affected children and their families. To increase access to services, care provision is decentralised through task-shifted care by community health extension workers. This study aimed to examine the impact of a brief training (Health Education and Training; HEAT) for Ethiopian rural health extension workers and comprised three groups: (1) health extension workers who completed a basic mental health training module (HEAT group, N = 104); (2) health extension workers who received enhanced training, comprising basic HEAT as well as video-based training on developmental disorders and a mental health pocket guide (HEAT+ group, N = 97); and (3) health extension workers untrained in mental health (N = 108). All participants completed a questionnaire assessing beliefs and social distance towards children with autism. Both the HEAT and HEAT+ group showed fewer negative beliefs and decreased social distance towards children with autism compared to the untrained health extension worker group, with the HEAT+ group outperforming the HEAT group. However, HEAT+ trained health extension workers were less likely to have positive expectations about children with autism than untrained health extension workers. These findings have relevance for task-sharing and scale up of autism services in low-resource settings worldwide.
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http://dx.doi.org/10.1177/1362361317730298DOI Listing
January 2019

The etiology of autistic traits in preschoolers: a population-based twin study.

J Child Psychol Psychiatry 2017 Aug 19;58(8):893-901. Epub 2017 May 19.

Department of Biological Psychology, Vrije Universiteit, Amsterdam, the Netherlands.

Background: Autism Spectrum Disorders (ASD) are highly heritable, but the exact etiological mechanisms underlying the condition are still unclear.

Methods: Using a multiple rater twin design in a large sample of general population preschool twins, this study aimed to (a) estimate the contribution of genetic and environmental factors to autistic traits, controlling for the possible effects of rater bias, (b) to explore possible sex differences in etiology and (c) to investigate the discordance in autistic traits in monozygotic and same-sex dizygotic twin pairs. The Netherlands Twin Register collected maternal and paternal ratings on autistic traits from a general population of 38,798 three-year-old twins. Autistic traits were assessed with the DSM-oriented Pervasive Developmental Problems scale of the Child Behavior Check List for preschoolers (1½-5 years).

Results: Mother and fathers showed high agreement in their assessment of autistic traits (r = .60-.66). Differences between children in autistic traits were largely accounted for by genetic effects (boys: 78% and girls: 83%). Environmental effects that are unique to a child also played a modest role. Environmental effects shared by children growing up in the same family were negligible, once rater bias was controlled for. While the prevalence for clinical ASD is higher in boys than in girls, this study did not find evidence for striking differences in the etiology of autistic traits across the sexes. Even though the heritability was high, 29% of MZ twin pairs were discordant for high autistic traits (clinical range vs. normal development), suggesting that despite high genetic risk, environmental factors might lead to resilience, unaffected status in the context of genetic risk, in some children.

Conclusions: It is important to focus future research on risk factors that might interplay with a genetic disposition for ASD, but also on protective factors that make a difference in the lives of children at genetic risk.
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http://dx.doi.org/10.1111/jcpp.12741DOI Listing
August 2017

Training needs and perspectives of community health workers in relation to integrating child mental health care into primary health care in a rural setting in sub-Saharan Africa: a mixed methods study.

Int J Ment Health Syst 2017 1;11:15. Epub 2017 Feb 1.

Department of Psychiatry, School of Medicine, College of Health Sciences, Addis Ababa University, PO 9086, Addis Ababa, Ethiopia.

Background: Community health workers can help to address the substantial unmet need for child mental health care in low and middle income countries. However, little is known about their training needs for this potential role. The aim of this study was to examine training needs and perspectives of community health extension workers (HEWs) in relation to providing child mental health care in rural Ethiopia.

Methods: The study was conducted in the Southern Nations, Nationalities and Peoples' Region of Ethiopia. A mixed methods approach was used. A total of 104 HEWs who had received training in child mental health using the Health Education and Training (HEAT) curriculum were interviewed using a structured survey. In-depth interviews were then conducted with 11 HEWs purposively selected on the basis of the administrative zone they had come from. A framework approach was used for qualitative data analysis.

Results: Most of the HEWs (88.5%; n = 93/104) reported that they were interested in the training provided and all respondents considered child mental health to be important. The perceived benefits of training included improved knowledge (n = 52), case identification (n = 14) and service provision (n = 22). While most of the participants had their training four months prior to the interview, over a third of them (35.6%; n = 37) had already organized mental health awareness-raising meetings. Participants in the qualitative interviews considered the problem of child mental disorders to be widespread and to cause a large burden to the family and the affected children. They reported that improving their competence and knowledge was important to address the problem and to tackle stigma and discrimination. Participants also listed some barriers for service provision, including lack of competence, stigma and institutional constraints. Opportunities mentioned included staff commitment, high levels of interest and a positive attitude towards providing the service.

Conclusions: Although the HEAT training on child mental health was brief, it appears to have had some impact in improving knowledge and care provision. If the key barriers to service provision are addressed and supported by policy guidance, community health workers may contribute substantially in addressing the treatment gap for children with mental health needs.
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http://dx.doi.org/10.1186/s13033-017-0121-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5286789PMC
February 2017

Exploring sex differences in autistic traits: A factor analytic study of adults with autism.

Autism 2017 08 2;21(6):760-768. Epub 2016 Nov 2.

3 Vrije Universiteit Amsterdam, The Netherlands.

Research has highlighted potential differences in the phenotypic and clinical presentation of autism spectrum conditions across sex. Furthermore, the measures utilised to evaluate autism spectrum conditions may be biased towards the male autism phenotype. It is important to determine whether these instruments measure the autism phenotype consistently in autistic men and women. This study evaluated the factor structure of the Autism Spectrum Quotient Short Form in a large sample of autistic adults. It also systematically explored specific sex differences at the item level, to determine whether the scale assesses the autism phenotype equivalently across males and females. Factor analyses were conducted among 265 males and 285 females. A two-factor structure consisting of a social behaviour and numbers and patterns factor was consistent across groups, indicating that the latent autism phenotype is similar among both autistic men and women. Subtle differences were observed on two social behaviour item thresholds of the Autism Spectrum Quotient Short Form, with women reporting scores more in line with the scores expected in autism on these items than men. However, these differences were not substantial. This study showed that the Autism Spectrum Quotient Short Form detects autistic traits equivalently in males and females and is not biased towards the male autism phenotype.
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http://dx.doi.org/10.1177/1362361316667283DOI Listing
August 2017

Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey.

BMC Health Serv Res 2016 Apr 27;16:152. Epub 2016 Apr 27.

The Open University, Department of Life, Health and Chemical Sciences, Milton Keynes, UK.

Background: Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia.

Methods: Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs.

Results: Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to support their child's development (27.5%). Most caregivers reported that talking to health professionals (86.3%) and family (85.3%) helped them to cope. Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms.

Conclusions: This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers' support are needed.
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http://dx.doi.org/10.1186/s12913-016-1383-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4847244PMC
April 2016

The motivation for special interests in individuals with autism and controls: Development and validation of the special interest motivation scale.

Autism Res 2016 06 24;9(6):677-88. Epub 2015 Oct 24.

Department of Life, Health & Chemical Sciences, The Open University, Milton Keynes, UK.

Clinical observations and first person accounts of living with autism suggest that individuals with autism are highly motivated to engage in special interests, and that these interests remain important throughout life. Previous research assessing special interests has mainly focused on parental reports of children with autism spectrum conditions (ASC). To better understand the significance of and motivations for engaging in special interests it is essential to use self-report ratings. This paper aims to systematically explore the motivations for engagement in special interests, and whether these differ in adults with ASC, first-degree relatives and general population controls. The Special Interest Motivation Scale (SIMS) was developed to assess motivation to engage in special interests. The internal structure of this scale was evaluated using factor analysis, and mean scores on the SIMS factors were subsequently compared across individuals with autism, parents and general population controls. Factor analysis indicated a 20-item SIMS containing five factors assessing Personal life values and goals; Intrinsic interest and knowledge; Prestige; Engagement and "flow" and Achievement. Individuals with autism were more motivated by Intrinsic interest and knowledge and by Engagement and flow than controls. The 20-item SIMS is a quick to administer measure that provides a reliable description of motivation to engage in special interests. This study indicates that individuals with ASC are highly motivated to engage in their special interest, and are more motivated than controls by intrinsic motivational factors, some of which are associated with positive affect. This has implications for research and clinical practice. Autism Res 2016, 9: 677-688. © 2015 International Society for Autism Research, Wiley Periodicals, Inc.
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http://dx.doi.org/10.1002/aur.1560DOI Listing
June 2016

Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide.

Autism Res 2015 Oct 6;8(5):473-6. Epub 2015 Oct 6.

Autism Speaks, 1 East 33rd Street, 4th Floor, New York.

Most research into the epidemiology, etiology, clinical manifestations, diagnosis and treatment of autism is based on studies in high income countries. Moreover, within high income countries, individuals of high socioeconomic status are disproportionately represented among participants in autism research. Corresponding disparities in access to autism screening, diagnosis, and treatment exist globally. One of the barriers perpetuating this imbalance is the high cost of proprietary tools for diagnosing autism and for delivering evidence-based therapies. Another barrier is the high cost of training of professionals and para-professionals to use the tools. Open-source and open access models provide a way to facilitate global collaboration and training. Using these models and technologies, the autism scientific community and clinicians worldwide should be able to work more effectively and efficiently than they have to date to address the global imbalance in autism knowledge and at the same time advance our understanding of autism and our ability to deliver cost-effective services to everyone in need.
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http://dx.doi.org/10.1002/aur.1575DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901137PMC
October 2015

Exploring the quantitative nature of empathy, systemising and autistic traits using factor mixture modelling.

Br J Psychiatry 2015 Nov 17;207(5):400-6. Epub 2015 Sep 17.

Rachel Grove, PhD, Andrew Baillie, PhD, Department of Psychology, Centre for Emotional Health, Macquarie University, Sydney, NSW, Australia; Carrie Allison, PhD, Department of Psychiatry, Autism Research Centre, Cambridge University, Cambridge, UK; Simon Baron-Cohen, PhD, Department of Psychiatry, Autism Research Centre, Cambridge University, Cambridge, UK and CLASS Clinic, Cambridgeshire and Peterborough NHS Foundation Trust, UK; Rosa A. Hoekstra, PhD, Department of Psychiatry, Autism Research Centre, Cambridge University, Cambridge, UK and Faculty of Science, The Open University, Milton Keynes, UK.

Background: Autism research has previously focused on either identifying a latent dimension or searching for subgroups. Research assessing the concurrently categorical and dimensional nature of autism is needed.

Aims: To investigate the latent structure of autism and identify meaningful subgroups in a sample spanning the full spectrum of genetic vulnerability.

Method: Factor mixture models were applied to data on empathy, systemising and autistic traits from individuals on the autism spectrum, parents and general population controls.

Results: A two-factor three-class model was identified, with two factors measuring empathy and systemising. Class one had high systemising and low empathy scores and primarily consisted of individuals with autism. Mainly comprising controls and parents, class three displayed high empathy scores and lower systemising scores, and class two showed balanced scores on both measures of systemising and empathy.

Conclusions: Autism is best understood as a dimensional construct, but meaningful subgroups can be identified based on empathy, systemising and autistic traits.
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http://dx.doi.org/10.1192/bjp.bp.114.155101DOI Listing
November 2015

The latent structure of cognitive and emotional empathy in individuals with autism, first-degree relatives and typical individuals.

Mol Autism 2014 1;5:42. Epub 2014 Aug 1.

Autism Research Centre, Department of Psychiatry, Cambridge University, Cambridge, UK ; Faculty of Science, The Open University, Milton Keynes, UK.

Background: Empathy is a vital component for social understanding involving the ability to recognise emotion (cognitive empathy) and provide an appropriate affective response (emotional empathy). Autism spectrum conditions have been described as disorders of empathy. First-degree relatives may show some mild traits of the autism spectrum, the broader autism phenotype (BAP). Whether both cognitive and emotional empathy, rather than cognitive empathy alone, are impaired in autism and the BAP is still under debate. Moreover the association between various aspects of empathy is unclear. This study aims to examine the relationship between different components of empathy across individuals with varying levels of genetic vulnerability to autism.

Methods: Factor analyses utilising questionnaire and performance-based task data were implemented among individuals with autism, parents of a child with autism and controls. The relationship between performance-based tasks and behavioural measures of empathy was also explored.

Results: A four-factor model including cognitive empathy, emotional empathy, social skills and a performance-based factor fitted the data best irrespective of genetic vulnerability. Individuals with autism displayed impairment on all four factors, with parents showing intermediate difficulties. Performance-based measures of empathy were related in almost equal magnitude to cognitive and emotional empathy latent factors and the social skills factor.

Conclusions: This study suggests individuals with autism have difficulties with multiple facets of empathy, while parents show intermediate impairments, providing evidence for a quantitative BAP. Impaired scores on performance-based measures of empathy, often thought to be pure measures of cognitive empathy, were also related to much wider empathy difficulties than impairments in cognitive empathy alone.
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http://dx.doi.org/10.1186/2040-2392-5-42DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4123248PMC
August 2014

The Sensory Perception Quotient (SPQ): development and validation of a new sensory questionnaire for adults with and without autism.

Mol Autism 2014 24;5:29. Epub 2014 Apr 24.

Department of Psychiatry, Autism Research Centre, Cambridge University, 18b Trumpington Road, Cambridge CB2 8AH, UK ; Cambridgeshire and Peterborough NHS Foundation Trust, CLASS Clinic, Cambridge CB21 5EF, UK.

Background: Questionnaire-based studies suggest atypical sensory perception in over 90% of individuals with autism spectrum conditions (ASC). Sensory questionnaire-based studies in ASC mainly record parental reports of their child's sensory experience; less is known about sensory reactivity in adults with ASC. Given the DSM-5 criteria for ASC now include sensory reactivity, there is a need for an adult questionnaire investigating basic sensory functioning. We aimed to develop and validate the Sensory Perception Quotient (SPQ), which assesses basic sensory hyper- and hyposensitivity across all five modalities.

Methods: A total of 359 adults with (n = 196) and without (n = 163) ASC were asked to fill in the SPQ, the Sensory Over-Responsivity Inventory (SensOR) and the Autism-Spectrum Quotient (AQ) online.

Results: Adults with ASC reported more sensory hypersensitivity on the SPQ compared to controls (P < .001). SPQ scores were correlated with AQ scores both across groups (r = .-38) and within the ASC (r = -.18) and control groups (r = -.15). Principal component analyses conducted separately in both groups indicated that one factor comprising 35 items consistently assesses sensory hypersensitivity. The SPQ showed high internal consistency for both the total SPQ (Cronbach's alpha = .92) and the reduced 35-item version (alpha = .93). The SPQ was significantly correlated with the SensOR across groups (r = -.46) and within the ASC (r = -.49) and control group (r = -.21).

Conclusions: The SPQ shows good internal consistency and concurrent validity and differentiates between adults with and without ASC. Adults with ASC report more sensitivity to sensory stimuli on the SPQ. Finally, greater sensory sensitivity is associated with more autistic traits. The SPQ provides a new tool to measure individual differences on this dimension.
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http://dx.doi.org/10.1186/2040-2392-5-29DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4005907PMC
May 2014

Empathizing, systemizing, and autistic traits: latent structure in individuals with autism, their parents, and general population controls.

J Abnorm Psychol 2013 May;122(2):600-9

Centre for Emotional Health, Department of Psychology, Macquarie University, Sydney, NSW, Australia.

The search for genes involved in autism spectrum conditions (ASC) may have been hindered by the assumption that the different symptoms that define the condition can be attributed to the same causal mechanism. Instead the social and nonsocial aspects of ASC may have distinct causes at genetic, cognitive, and neural levels. It has been posited that the core features of ASC can be explained by a deficit in empathizing alongside intact or superior systemizing; the drive to understand and derive rules about a system. First-degree relatives also show some mild manifestations that parallel the defining features of ASC, termed the broader autism phenotype. Factor analyses were conducted to assess whether the latent structure of empathizing, systemizing, and autistic traits differs across samples with a high (individuals on the spectrum), medium (first-degree relatives) or low (general population controls) genetic vulnerability to autism. Results highlighted a two-factor model, confirming an empathizing and a systemizing factor. The relationship between these two factors was significantly stronger in first-degree relatives and the autism group compared with controls. The same model provided the best fit among the three groups, suggesting a similar latent structure irrespective of genetic vulnerability. However, results also suggest that although these traits are relatively independent in the general population, they are substantially correlated in individuals with ASC and their parents. This implies that there is substantially more overlap between systemizing and empathizing among individuals with an increased genetic liability to autism. This has potential implications for the genetic, environmental, and cognitive explanations of autism spectrum conditions.
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http://dx.doi.org/10.1037/a0031919DOI Listing
May 2013

Are autism spectrum conditions more prevalent in an information-technology region? A school-based study of three regions in the Netherlands.

J Autism Dev Disord 2012 May;42(5):734-9

Autism Research Centre, Department of Psychiatry, University of Cambridge, Douglas House, 18b Trumpington Road, CB2 8AH Cambridge, UK.

We tested for differences in the prevalence of autism spectrum conditions (ASC) in school-aged children in three geographical regions in the Netherlands. Schools were asked to provide the number of children enrolled, the number having a clinical diagnosis of ASC and/or two control neurodevelopmental conditions. Prevalence was evaluated by negative binomial regression and adjustments were made for non-response and size of the schools. The prevalence estimates of ASC in Eindhoven was 229 per 10,000, significantly higher than in Haarlem (84 per 10,000) and Utrecht (57 per 10,000), whilst the prevalence for the control conditions were similar in all regions. Phase two is planned to validate school-reported cases using standardized diagnostic methods and to explore the possible causes for these differences.
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http://dx.doi.org/10.1007/s10803-011-1302-1DOI Listing
May 2012

Autism spectrum disorders and autistic traits: a decade of new twin studies.

Am J Med Genet B Neuropsychiatr Genet 2011 Apr 13;156B(3):255-74. Epub 2011 Jan 13.

Centre for Brain and Cognitive Development, Department of Psychological Sciences, Birkbeck, University of London, UK.

Researchers continue to pursue a better understanding of the symptoms, comorbidities, and causes of autism spectrum disorders. In this article we review more than 30 twin studies of autism spectrum disorders (ASDs) and autistic traits published in the last decade that have contributed to this endeavor. These twin studies have reported on the heritability of autism spectrum disorders and autistic traits in different populations and using different measurement and age groups. These studies have also stimulated debate and new hypotheses regarding why ASDs show substantial symptom heterogeneity, and what causes their comorbidity with intellectual disability, language delay, and other psychiatric disorders such as ADHD. These studies also reveal that the etiology of autism and autistic traits assessed in the general population is more similar than different, which contributes to the question of where the boundary lies between autism and typical development. Recent findings regarding molecular genetic and environmental causes of autism are discussed in the relation to these twin studies. Lastly, methodological assumptions of the twin design are given consideration, as well as issues of measurement. Future research directions are suggested to ensure that this decade is as productive as the last in attempting to disentangle the causes of autism spectrum disorders.
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http://dx.doi.org/10.1002/ajmg.b.31159DOI Listing
April 2011

The construction and validation of an abridged version of the autism-spectrum quotient (AQ-Short).

J Autism Dev Disord 2011 May;41(5):589-96

Department of Life Sciences, Faculty of Science, The Open University, Walton Hall, Milton Keynes, MK7 6AA, UK.

This study reports on the development and validation of an abridged version of the 50-item Autism-Spectrum Quotient (AQ), a self-report measure of autistic traits. We aimed to reduce the number of items whilst retaining high validity and a meaningful factor structure. The item reduction procedure was performed on data from 1,263 Dutch students and general population adults. The resulting 28-item AQ-Short was subsequently validated in 3 independent samples, both clinical and controls, from the Netherlands and the UK. The AQ-Short comprises two higher-order factors assessing 'social behavioral difficulties' and 'a fascination for numbers/patterns'. The clear factor structure of the AQ-Short and its high sensitivity and specificity make the AQ-Short a useful alternative to the full 50-item version.
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http://dx.doi.org/10.1007/s10803-010-1073-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076581PMC
May 2011

Limited genetic covariance between autistic traits and intelligence: findings from a longitudinal twin study.

Am J Med Genet B Neuropsychiatr Genet 2010 Jul;153B(5):994-1007

Department of Psychiatry, Autism Research Centre, University of Cambridge, Cambridge, UK.

Intellectual disability is common in individuals with autism spectrum conditions. However, the strength of the association between both conditions and its relevance to finding the underlying (genetic) causes of autism is unclear. This study aimed to investigate the longitudinal association between autistic traits and intelligence in a general population twin sample and to examine the etiology of this association. Parental ratings of autistic traits and performance on intelligence tests were collected in a sample of 8,848 twin pairs when the children were 7/8, 9, and 12 years old. Phenotypic and longitudinal correlations in the sample as a whole were compared to the associations in the most extreme scoring 5% of the population. The genetic and environmental influences on the overlap between autistic traits and IQ and on the stability of this relationship over time were estimated using structural equation modeling. Autistic traits were modestly negatively correlated to intellectual ability, both in the extreme scoring groups and among the full-range scores. The correlation was stable over time and was mainly explained by autistic trait items assessing communication difficulties. Genetic model fitting showed that autistic traits and IQ were influenced by a common set of genes and a common set of environmental influences that continuously affect these traits throughout childhood. The genetic correlation between autistic traits and IQ was only modest. These findings suggest that individual differences in autistic traits are substantially genetically independent of intellectual functioning. The relevance of these findings to future studies is discussed.
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http://dx.doi.org/10.1002/ajmg.b.31066DOI Listing
July 2010

The genetic and environmental structure of verbal and visuospatial memory in young adults and children.

Neuropsychology 2009 Nov;23(6):792-802

Department of Biological Psychology.

The extent to which verbal (VM) and visuospatial memory (VSM) tests measure the same or multiple constructs is unclear. Likewise the relationship between VM and VSM across development is not known. These questions are addressed using genetically informative data, studying two age cohorts (young adults and children) of twins and siblings. VM and VSM were measured in the working memory and short-term memory domain. Multivariate genetic analyses revealed that two highly correlated common genetic factors, one for VM and one for VSM, gave the best description of the covariance structure among the measures. Only in children, specific genetic factors were also present. This led to the following conclusions: In children, one genetic factor is responsible for linking VM and VSM. Specific genetic factors create differences between these two domains. During the course of development, the influence of genetic factors unique to each of these domains disappears and the genetic factor develops into two highly correlated factors, which are specific to VM and VSM respectively. At the environmental level, in both age cohorts, environmental factors create differences between these domains.
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http://dx.doi.org/10.1037/a0016526DOI Listing
November 2009

Genetic architecture of verbal abilities in children and adolescents.

Dev Sci 2009 Nov;12(6):1041-53

Department of Biological Psychology, VU University Amsterdam, The Netherlands.

The etiology of individual differences in general verbal ability, verbal learning and letter and category fluency were examined in two independent samples of 9- and 18-year-old twin pairs and their siblings. In both age groups, we observed strong familial resemblance for general verbal ability and moderate familial resemblance for verbal learning, letter and category fluency. All familial resemblance was explained by genetic factors. There was significant covariance among the tests, which was stronger in magnitude in the adolescent cohort. The covariance was mainly explained by genetic effects shared by subtests, both in middle childhood and in late adolescence. In addition to a shared set of genes that influenced all phenotypes, there were also genetic influences specific to the different verbal phenotypes.
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http://dx.doi.org/10.1111/j.1467-7687.2009.00843.xDOI Listing
November 2009