Papers/Presentations

Evidence for ASD Recurrence Rates and Reproductive Stoppage From Large UK ASD Research Family Databases

Claire Wood, Frances Warnell, Mary Johnson, Annete Hames, Mark Pearce, Helen McConachie and Jeremy Parr,(2014)

Abstract:

Following a diagnosis of a developmental disorder such as autism spectrum disorder (ASD) in early childhood, parents may decide to have fewer children than previously planned. The tendency for families to halt reproduction after receiving a diagnosis for one child is known as reproductive stoppage. Stoppage may lead to an underestimate of recurrence risk estimates of parents having more than one child with ASD. Using two large UK ASD family databases, we investigated recurrence rates for ASD and evidence for reproductive stoppage for both ASD and undiagnosed ASD/broader autism phenotype in a subgroup of families. Reproductive stoppage was tested for using the Mann�Whitney U-test to disprove the null hypothesis that affected and nonaffected children were distributed randomly by birth order. Dahlberg’s later-sib method was used to estimate recurrence risk and take stoppage into account. Data were available from 299 families (660 children) including 327 with ASD. Ten percent of the complete families had more than one child with an ASD. Using Dahlberg’s later-sib method, the recurrence risk for ASD was 24.7% overall and 50.0% in families with two or more older siblings with ASD. Children with ASD were born significantly later in families than those without ASD in all sibship combinations. This study shows strong evidence that ASD is associated with reproductive stoppage. These data have important implications for family planning and genetic counseling.

Link to paper: http://onlinelibrary.wiley.com/doi/10.1002/aur.1414/abstract

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ASD research databases: Improving infrastructure and capacity for research

Frances Warnell, B George, Helen McConachie, Mary Johnson, Richard Hardy and Jeremy Parr

(Submitted for publication)

Abstract:

Objective: To establish the Autism Spectrum Database-UK (ASD-UK) and improve UK ASD research infrastructure by increasing 1. families’ opportunities to participate in ASD research; 2. the number of families available for recruitment by UK ASD researchers.

Setting: Recruitment through a network of 50 UK child health teams, and self referral.

Patients: Parents/carers with a child with ASD, aged 2-16 years, completed questionnaires about ASD and some gave professionals’ reports about their children.

Results: 1000 families registered with ASD-UK in 30 months. Comparison of families who consented to participate and those who chose not to revealed similar characteristics between groups. The validity of parent reported ASD diagnoses of children was found to be very high. A comparison of the characteristics of children and families from ASD-UK with the regional Database of children with ASD Living in the North East (Daslne), and characteristics of families from population studies showed that ASD-UK families are representative of families of children with ASD overall.

Conclusions: ASD-UK includes a non-biased sample of families who have provided parent reported data about their child and family. These families can now be contacted by researchers about UK autism research.

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Emotional and Behavioural Problems in Children with Autism Spectrum Disorder

Morag Maskey, Frances Warnell, Jeremy R. Parr, Ann Le Couteur & Helen McConachie

Journal of Autism and Developmental Disorders, Published online 16/8/12.

Link to paper’s Title and Abstract

Link to paper

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