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Publications

2024

  • Hughes, G., Jing Tian Lim, Skinner, M., Chowdhury, I., Moss, J., & Sarah Joanne White. (2024). Exploring the relationship between mentalizing and autistic traits in women with and without the fragile x premutation. https://doi.org/10.31234/osf.io/mcdvf (Preprint)

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  • Steindorsdottir F, Goodall K, Christie H, McConachie D, Herwegen JV, Ballantyne C, Richards C, Crawford H, Outhwaite L, Gallagher-Mitchell T, Moss, J, Khawam G and Gillespie-Smith K. (In Press). Are you coping how I’m coping? An exploratory factor analysis of the Brief-COPE among caregivers of children with and without learning disabilities during COVID-19 restrictions in the UK. International Journal of Developmental Disabilities.

 

  • Gillespie-Smith K, Goodall K, McConachie D, Van Herwegen J, Crawford H, Ballantyne C, Richards C, Gallagher-Mitchell T, Moss J, Khawam G, Outhwaite L, Marriott E, Steindorsdottir F & Christie H. (2024) A Longitudinal study looking at the impact of COVID-19 restrictions and transitions on psychological distress in caregivers of children with Intellectual Disabilities in the UK. Journal of Child Psychology and Psychiatry Advances. https://uws.pure.elsevier.com/en/publications/8238233b-f182-4419-8ee2-3facd8275b50

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  • Ellis K, White S, Dziwisz M, Agarwal P and Moss J. (2024). Visual attention patterns during a gaze following task in neurogenetic syndromes associated with unique profiles of autistic traits: fragile X and Cornelia de Lange syndromes. Cortex, https://doi.org/10.1016/j.cortex.2024.02.012

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  • Ellis K, Pearson E, Murray C, Jenner L, Bissell S, Trower H, Smith K, Groves L, Jones B, Williams N, McCourt A & Moss, J. (In Press). The importance of refined assessment of communication and social functioning in people with intellectual disabilities: Insights from neurogenetic syndrome research. International Review of Research in Developmental Disabilities

  • Herring, J., Johnson, K., Scerif, G., Weight, E., Richstein, J., Crawford, H., Robinson, H., Gawarammana, R., & Ellis, K. (2024). The joys of fragile X: Understanding the strengths of fragile X and delivering a diagnosis in a helpful, holistic way. Neurodiversity, 2. https://doi.org/10.1177/27546330241287685

2023

  • Ellis, K., White, S. J., Dr, Dziwisz, M., Agarwal, P., & Moss, J. (2023). Visual attention patterns during a gaze following task in neurogenetic syndromes associated with unique profiles of autistic traits: fragile X and Cornelia de Lange syndromes. https://doi.org/10.31234/osf.io/2aehp (Preprint)​

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  • Pownall, M., Charlotte Rebecca Pennington, Norris, E., Juanchich, M., Smailes, D., Russell, S., Ng‐Knight, T., Thomas Rhys Evans, Persson, S., Matthew, Loukia Tzavella, Monk, R. L., Gough, T. G., Benwell, C., Mahmoud Medhat Elsherif, Farran, E. K., Gallagher-Mitchell, T., Kendrick, L. T., Bahnmueller, J., & Nordmann, E. (2023). Evaluating the Pedagogical Effectiveness of Study Preregistration in the Undergraduate Dissertation. Advances in Methods and Practices in Psychological Science, 6(4). https://doi.org/10.1177/25152459231202724

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  • ​Mazhar, A., Ellis, K., Moss, J., & Sarah Joanne White. (2023). Effects of Bilingualism, Household Size and Siblings on Theory of Mind Development in Pakistani and British Children. https://doi.org/10.31234/osf.io/93mbe (Preprint)

 

  • Jenner, L.A., Farran, E.K., Welham, A. et al. The use of eye-tracking technology as a tool to evaluate social cognition in people with an intellectual disability: a systematic review and meta-analysis. J Neurodevelop Disord 15, 42 (2023). https://doi.org/10.1186/s11689-023-09506-9​

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  • Snellgrove, H., & Moss, J. W. (2023). Supporting the complex needs of children with Genetic Syndromes in educational practice: A new online resource for teachers and education practitioners. Developmental Psychology Forum, 1(99), 8–9. https://doi.org/10.53841/bpsdev.2023.1.99.8

 

  • Ellis, K., Pearson., E, Murray., C, Jenner., L, Bissel., S, Trower., H, Smith., K, Groves., L, Jones., B, Williams., N, McCourt., A, Moss., J. (2023). The importance of refined assessment of communication and social functioning in people with intellectual disabilities: Insights from neurogenetic syndrome research. https://doi.org/10.1016/bs.irrdd.2023.07.003.

 

  • Jenner, L., Richards, C., Howard, R. et al. Heterogeneity of Autism Characteristics in Genetic Syndromes: Key Considerations for Assessment and Support. Curr Dev Disord Rep 10, 132–146 (2023). https://doi.org/10.1007/s40474-023-00276-6​

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  • Laverty, C, Agar, G, Sinclair-Burton, L, et al (2023) The 10-year trajectory of aggressive behaviours in autistic individuals. Journal of Intellectual Disabilities Research, 67: 295–309.

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  • Bozhilova, N., Welham, A., Adams, D. et al. Profiles of autism characteristics in thirteen genetic syndromes: a machine learning approach. Molecular Autism 14, 3 (2023). https://doi.org/10.1186/s13229-022-00530-5​

2022

  • Groves, L., Moss, J., Oliver, C., Royston, R., Waite, J., & Crawford, H. (2022). Divergent presentation of anxiety in high-risk groups within the intellectual disability population. Journal of neurodevelopmental disorders, 14(1), 54. https://doi.org/10.1186/s11689-022-09462-w

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  • Sloneem, J., Moss, J., Powell, S., Hawkins, C., Fosi, T., Richardson, H., & Aylett, S. (2022). The prevalence and profile of autism in Sturge-Weber syndrome. Journal of autism and developmental disorders, 52(5), 1942–1955. https://doi.org/10.1007/s10803-021-05062-0

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  • Perry, V., Ellis, K., Moss, J., Beck, S. R., Singla, G., Crawford, H., Waite, J., Richards, C., & Oliver, C. (2022). Executive function, repetitive behaviour and restricted interests in neurodevelopmental disorders. Research in Developmental Disabilities, 122, 104166. https://doi.org/10.1016/j.ridd.2021.104166

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  • Bissell, S., Oliver, C., Moss, J. et al. The behavioural phenotype of SATB2-associated syndrome: a within-group and cross-syndrome analysis. J Neurodevelop Disord 14, 25 (2022). https://doi.org/10.1186/s11689-022-09426-0

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  • Oliver, C., Ellis, K., Agar, G., Bissell, S., Chung, J. C. Y., Crawford, H., Pearson, E., Wade, K., Waite, J., Allen, D., Deeprose, L., Edwards, G., Jenner, L. C., Kearney, B. E., Shelley, L., Smith, K., Trower, H., Adams, D., Daniel, L. J., . . . Woodcock, K. (2022). Distress and challenging behavior in people with profound or severe intellectual disability and complex needs: Assessment of causes and evaluation of intervention outcomes. In International review of research in developmental disabilities (pp. 109–189). https://doi.org/10.1016/bs.irrdd.2022.05.004

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  • Jenner, L. (2022). Why open research is important for understanding how eye-tracking technology can be used as a tool to evaluate social cognition in intellectual disability. https://doi.org/10.31234/osf.io/xmsu4 (Preprint)

2021

  • Marlborough, M., Welham, A., Jones, C., Reckless, S., & Moss, J. (2021). Autism spectrum disorder in females with fragile X syndrome: a systematic review and meta-analysis of prevalence. Journal of Neurodevelopmental Disorders, 13(1). https://doi.org/10.1186/s11689-021-09362-5

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  • Pearson, E., Nielsen, E., Kita, S., Groves, L., Nelson, L., Moss, J. & Oliver, C. (2021). Low speech rate but high gesture rate during conversational interaction in people with Cornelia de Lange syndrome. Journal of Intellectual Disability Research. https://doi.org/10.1111/jir.12829

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  • Groves L, Oliver C & Moss, J. (2021). Behaviour across the lifespan in Cornelia de Lange syndrome. Current Opinion in Psychiatry, 34, 112–117.

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  • White S, Gerber D, Hernandez RDS, Efiannayi A, Chowdhury I, Partington H and Moss J. (2021). Autistic traits and mental health in females with the fragile X premutation: maternal status vs. genetic risk. The British Journal of Psychiatry, 218(1), 28-34. https://doi:10.1192/bjp.2020.231

 

  • Ellis, K., Moss, J., Stefanidou, C., Oliver, C., & Apperly, I. A. (2021). The development of early social cognitive skills in neurogenetic syndromes associated with autism: Cornelia de Lange, fragile X and Rubinstein–Taybi syndromes. Orphanet Journal of Rare Diseases, 16(1). https://doi.org/10.1186/s13023-021-02117-4

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  • Oliver, C., Adams, D., Allen, D., Crawford, C., Heald, M., Moss, J., Richards, C., Waite, J., Welham, J., Wilde, L., and Woodcock, K. (2020). The behaviour and wellbeing of children and adults with severe intellectual disability and complex needs: the Be-Well checklist for carers and professionals, Paediatrics and Child Health, 30(12) 416-424.  https://doi.org/10.1016/j.paed.2020.09.003

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  • Ellis, K., Oliver, C., Stefanidou, C., Apperly, I., & Moss, J. (2020). An Observational Study of Social Interaction Skills and Behaviors in Cornelia de Lange, Fragile X and Rubinstein-Taybi Syndromes. Journal of Autism and Developmental Disorders. doi: 10.1007/s10803-020-04440-4

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  • Licence, L., Oliver, C., Moss, J., & Richards, C. (2019). Prevalence and Risk-Markers of Self-Harm in Autistic Children and Adults. Journal of Autism and Developmental Disorders, 50(10), 3561–3574. https://doi.org/10.1007/s10803-019-04260-1

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  • Crawford, H., Moss, J., Groves, L., Dowlen, R., Nelson, L., Reid, D., & Oliver, C. (2019). A Behavioural Assessment of Social Anxiety and Social Motivation in Fragile X, Cornelia de Lange and Rubinstein-Taybi Syndromes. Journal of Autism and Developmental Disorders, 50(1), 127–144. https://doi.org/10.1007/s10803-019-04232-5​

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  • Laverty, C., Oliver, C., Moss, J., Nelson, L., & Richards, C. (2020). Persistence and predictors of self-injurious behaviour in autism: a ten-year prospective cohort study. Molecular Autism, 11, 8. doi: 10.1186/s13229-019-0307-z.​

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  • Royston, R., Oliver, C., Howlin, P., Dosse, A., Armitage, P., Moss, J., & Waite, J. (2020). The Profiles and Correlates of Psychopathology in Adolescents and Adults with Williams, Fragile X and Prader–Willi Syndromes. Journal of Autism and Developmental Disorders, 59, 893-903. doi: 10.1007/s10803-019-04317-1.

2020
2019

  • Crawford, H., Moss, J., Groves, L., Dowlen, R., Nelson, L., Reid, D., & Oliver, C. (2019). A behavioural assessment of social anxiety and social motivation in fragile X, Cornelia de Lange and Rubinstein-Taybi syndromes. Journal of Autism and Developmental Disorders, 50, 127-144. doi: 10.1007/s10803-019-04232-5

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  • Watkins, A., Bissell, S., Moss, J., Oliver, C., Clayton-Smith, J., Haye, L., Heald, M., & Welham, A. (2019). Behavioural and psychological characteristics in Pitt-Hopkins syndrome: a comparison with Angelman and Cornelia de Lange syndromes. Journal of Neurodevelopmental Disorders, 11, 24. doi: 10.1186/s11689-019-9282-0.

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  • Groves, L., Moss, J., Crawford, H., Nelson, L., Stinton, C., Singla, G., & Oliver, C. (2019). Lifespan trajectory of affect in Cornelia de Lange syndrome: Towards a neurobiological hypothesis. Journal of Neurodevelopmental Disorders, 11, 6. doi: 10.1186/s11689-019-9269-x.

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  • Cochran, L., Welham, A., Oliver, C., Arshad, A., & Moss, J. (2019). Age-related behavioural change in Cornelia de Lange and Cri du Chat syndromes: a seven year follow-up study. Journal of Autism and Developmental Disorders, 49, 2476-2487. doi: 10.1007/s10803-019-03966-6.

2018

  • Adams, D.,  Hastings, R. P., Alston-Knox, C., Cianfaglione, R., Eden, K., Felce, D., Griffith, G. D., Moss, J., Stinton, C., & Oliver, C. (2018). Using Bayesian methodology to explore the profile of mental health and well-being in 646 mothers of children with 13 rare genetic syndromes in relation to mothers of children. Orphanet Journal of Rare Diseases, 13, 185. doi: 10.1186/s13023-018-0924-1.

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  • Kline, A. D*., Moss, J*., Selicorni, A*., Pedersen, A. M. B., Deardorff, M. A., Gillett, P., .... & Hennekam, R. C. (2018). Diagnosis and Management in Cornelia de Lange Syndrome: First International Consensus Statement. Nature Reviews Genetics, 19, 649-666. doi: 10.1038/s41576-018-0031-0. *joint first author

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  • Crawford, H., Moss, J., Stinton, C., Singla, G., & Oliver, C. (2018). Overactivity, impulsivity and repetitive behaviour in males with fragile X syndrome: contrasting developmental trajectories in those with and without elevated autism symptoms. Journal of Intellectual Disability Research, 62, 672-683. doi: 10.1111/jir.12488.

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  • Bell, L. R., Oliver, C., Wittkowski, A., Moss, J., & Hare, D. J. (2018). Attenuated behaviour in Cornelia de Lange and Fragile X syndromes: Presence and association with features of autism. Journal of Intellectual Disability Research, 62, 486-495. doi: 10.1111/jir.12481.

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  • Bissell, S., Wilde, L., Richards, C., Moss, J., & Oliver, C. (2018). The behavioural phenotype of Potocki-Lupski syndrome: a cross-syndrome comparison. Journal of Neurodevelopmental Disorders, 10, 2. DOI 10.1186/s11689-017-9221-x.

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  • Adams, D., Clarke, S., Griffith, G., Howlin, P., Moss, J., Petty, J., Tunnicliffe, P., & Oliver, C. (2018). Mental health and well-being in mothers of children with rare genetic syndromes showing chronic challenging behavior: A cross-sectional and longitudinal study. American Journal on Intellectual and Developmental Disabilities, 123, 241-253. doi: 10.1352/1944-7558-123.3.241. 

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  • Wilde, L., Wade, K., Eden, K., Moss, J., de Vries, P. J., & Oliver, C. (2018). Persistence of self-injury, aggression and property destruction in children and adults with tuberous sclerosis complex. Journal of Intellectual Disability Research, 62, 1058-1071. doi: 10.1111/jir.12472.

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  • Royston, R., Oliver, C., Moss, J., Adams, D., Berg, K., Burbidge, C., Howlin, C. Nelson, L., Stinton, C. & Waite, J (2018). Brief report: repetitive behaviour profiles in Williams syndrome: Cross syndrome comparisons with Prader-Willi and Down syndromes. Journal of Autism and Developmental Disorders, 48, 326-331. doi: 10.1007/s10803-017-3319-6

2017

  • Waite, J., Rose, J., Wilde, L., Eden, K., Stinton, C., Moss, J., & Oliver, C. (2017). Associations between behaviours that challenge in adults with intellectual disability, parental perceptions and parental mental health. British Journal of Clinical Psychology, 57, 133. doi: 10.1111/bjc.12146.

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  • Richards, C., Powis, L., Moss, J., Stinton, C., Nelson, L., & Oliver, C. (2017). Prospective study of autism phenomenology and the behavioural phenotype of Phelan-McDermid syndrome: comparison to fragile X syndrome, Down syndrome and idiopathic autism spectrum disorder. Journal of Neurodevelopmental Disorders, 9, 37. doi: 10.1186/s11689-017-9217-6.

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  • Nelson, L., Crawford, H., Reid, D., Moss, J., & Oliver, C. (2017). An experimental study of executive function and social impairment in Cornelia de Lange syndrome. Journal of Neurodevelopmental Disorders, 9, 33. doi: 10.1186/s11689-017-9213-x.

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  • Reid, D., Moss, J., Nelson, L., Groves, L., & Oliver, C. (2017). Executive functioning in Cornelia de Lange syndrome: Domain asynchrony and age related performance. Journal of Neurodevelopmental Disorders, 9, 29. doi: 10.1186/s11689-017-9208-7.

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  • Waite, J., Rose, J., Wilde, L., Eden, K., Stinton, C., Moss, J., & Oliver, C. (2017). Associations between behaviours that challenge in adults with intellectual disability, parental perceptions and parental mental health. British Journal of Clinical Psychology, 56, 408-430.​ doi: 10.1111/bjc.12146.

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  • Moss, J., Fitzpatrick, D., Welham, A., Penhallow, J., & Oliver, C. (2017). Genotype-phenotype correlations in Cornelia de Lange syndrome: Behavioral characteristics and changes with age. American Journal of Medical Genetics, 173, 1566-1574. doi: 10.1002/ajmg.a.38228.

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  • Crawford, H., Moss, J., Oliver, C., & Riby, D. (2017). Differential effects of anxiety and autism on social scene scanning in males with fragile X syndrome. Journal of Neurodevelopmental Disorders, 9, 9. doi: 10.1186/s11689-017-9189-6.

2016

  • Moss, J. (2016). Commentary on ‘Prevalence of autism and ADHD in Down syndrome: a population-based study’ by Oxelgren et al. Developmental Medicine and Child Neurology, 59, 240.

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  • Warner, G., Salamone, E., Moss, J., Charman, T., & Howlin, P. (2016). Profiles of children with Down syndrome who meet screening criteria for autism spectrum disorder: a comparison with children with autism. Journal of Intellectual Disability Research, 61, 75-82. doi: 10.1111/jir.12344.​

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  • Wilde, L., Eden, K., de Vries, P. J., Moss, J., Welham, A., & Oliver, C. (2016). Self-injury and aggression in adults with tuberous sclerosis complex: frequency, associated person characteristics, and implications for assessment. Research in Developmental Disabilities, 64, 119-130. doi: 10.1016/j.ridd.2017.03.007.

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  • Richards, C., Moss, J., Nelson, L., & Oliver, C. (2016). Persistence of self-injurious behaviour in autism spectrum disorder over three years: A prospective cohort study of risk markers. Journal of Neurodevelopmental Disorders, 8, 21. doi: 10.1186/s11689-016-9153-x.

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  • Crawford, H., Moss, J., Oliver, C., Elliott, N., Anderson, G. M., & McCleery, J. P. (2016). Visual preference for social stimuli in individuals with autism or neurodevelopmental disorders: an eye-tracking study. Molecular Autism, 7, 24. doi: 10.1186/s13229-016-0084-x.

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  • Moss, J., Nelson, L., Powis, L., Richards, C., Waite, J., & Oliver, C. (2016) A comparative study of sociability in Angelman, Cornelia de Lange, Fragile X and Rubinstein Taybi syndromes and autism spectrum disorder. American Journal of Intellectual and Developmental Disabilities, 121, 465-486. doi: 10.1352/1944-7558-121.6.465.

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