The ASD-Plus study : co-existing emotional and behavioural conditions in children with Autism Spectrum Disorder : frequency, severity and correlates from two large UK databases

PhD ThesisThe aims of this study were to investigate 1. The frequency, severity, associations and impact on the family of co-existing emotional and behavioural conditions in children with ASD 2. The role of unmet parent needs on the impact on families of children with ASD Methods The study used a cross-sectional observational design. Parents of children with ASD were recruited from two large ASD research databases. Standardised parent-report questionnaires were identified following a literature review, and used to measure co-existing conditions. A schedule was developed to estimate parents’ unmet needs regarding their child’s co-existing conditions and services received. Main findings 80% of parents reported children had moderate-severe impairment in at least one co-morbid psychopathology; 42% reported moderate-severe impairment in three or more types of psychopathology. Co-morbid psychopathology was prevalent in children with ASD irrespective of age, gender, type of diagnosis, language level and school type. However, younger age, autism diagnosis and lower language ability significantly predicted internalizing problem behaviours. Age relationships with problems in sensory processing, eating, sleep and anxiety were found as hypothesised from the literature. Co-morbid psychopathology, internalising and externalising problem behaviours, special schooling and having more than one child with ASD were associated with greater impact on families. Over two thirds of parents reported at least one unmet need; 41% had three or more unmet needs for support with co-existing emotional and behavioural conditions. The total unmet needs mediated the relationship between co-morbid psychopathology and the impact ii on the family. The unmet needs mediated the impact on the family of externalising behaviours, but not of internalising behaviours. Conclusions Co-existing conditions are common in children with ASD and have significant impact on the family. Clinicians should look ‘beyond the diagnosis of ASD’ regarding what impacts families and whether additional support and services might ameliorate this impact