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1. The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention

Author

Leadbitter, K, Aldred, C, Mcconachie, H, Le Couteur, A, Kapadia, D, Charman, T, Macdonald, W, Salomone, E, Emsley, R, Green, J, Barrett, B, Barron, S, Beggs, K, Blazey, L, Bourne, K, Byford, S, Cole-Fletcher, R, Collino, J, Colmer, R, Cutress, A, Gammer, I, Harrop, C, Houghton, T, Howlin, P, Hudry, K, Leach, S, Maxwell, J, Parr, J, Pickles, A, Randles, S, Slonims, V, Taylor, C, Temple, K, Tobin, H, Vamvakas, G, White, L, Leadbitter, Kathy, Aldred, Catherine, McConachie, Helen, Le Couteur, Ann, Kapadia, Dharmi, Charman, Tony, Macdonald, Wendy, SALOMONE, ERICA, Emsley, Richard, Green, Jonathan, Barrett, Barbara, Barron, Sam, Beggs, Karen, Blazey, Laura, Bourne, Katy, Byford, Sarah, Cole-Fletcher, Rachel, Collino, Julia, Colmer, Ruth, Cutress, Anna, Gammer, Isobel, Harrop, Clare, Houghton, Tori, Howlin, Pat, Hudry, Kristelle, Leach, Sue, Maxwell, Jessica, Parr, Jeremy, Pickles, Andrew, Randles, Sarah, Slonims, Vicky, Taylor, Carol, Temple, Kathryn, Tobin, Hannah, Vamvakas, George, White, Lydia, Leadbitter, K, Aldred, C, Mcconachie, H, Le Couteur, A, Kapadia, D, Charman, T, Macdonald, W, Salomone, E, Emsley, R, Green, J, Barrett, B, Barron, S, Beggs, K, Blazey, L, Bourne, K, Byford, S, Cole-Fletcher, R, Collino, J, Colmer, R, Cutress, A, Gammer, I, Harrop, C, Houghton, T, Howlin, P, Hudry, K, Leach, S, Maxwell, J, Parr, J, Pickles, A, Randles, S, Slonims, V, Taylor, C, Temple, K, Tobin, H, Vamvakas, G, White, L, Leadbitter, Kathy, Aldred, Catherine, McConachie, Helen, Le Couteur, Ann, Kapadia, Dharmi, Charman, Tony, Macdonald, Wendy, SALOMONE, ERICA, Emsley, Richard, Green, Jonathan, Barrett, Barbara, Barron, Sam, Beggs, Karen, Blazey, Laura, Bourne, Katy, Byford, Sarah, Cole-Fletcher, Rachel, Collino, Julia, Colmer, Ruth, Cutress, Anna, Gammer, Isobel, Harrop, Clare, Houghton, Tori, Howlin, Pat, Hudry, Kristelle, Leach, Sue, Maxwell, Jessica, Parr, Jeremy, Pickles, Andrew, Randles, Sarah, Slonims, Vicky, Taylor, Carol, Temple, Kathryn, Tobin, Hannah, Vamvakas, George, and White, Lydia

Abstract

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up

Published
2018

2. Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial

Author

Pickles, A, Le Couteur, A, Leadbitter, K, Salomone, E, Cole-Fletcher, R, Tobin, H, Gammer, I, Lowry, J, Vamvakas, G, Byford, S, Aldred, C, Slonims, V, Mcconachie, H, Howlin, P, Parr, J, Charman, T, Green, J, Pickles, Andrew, Le Couteur, Ann, Leadbitter, Kathy, Salomone, Erica, Cole-Fletcher, Rachel, Tobin, Hannah, Gammer, Isobel, Lowry, Jessica, Vamvakas, George, Byford, Sarah, Aldred, Catherine, Slonims, Vicky, McConachie, Helen, Howlin, Patricia, Parr, Jeremy R, Charman, Tony, Green, Jonathan, Pickles, A, Le Couteur, A, Leadbitter, K, Salomone, E, Cole-Fletcher, R, Tobin, H, Gammer, I, Lowry, J, Vamvakas, G, Byford, S, Aldred, C, Slonims, V, Mcconachie, H, Howlin, P, Parr, J, Charman, T, Green, J, Pickles, Andrew, Le Couteur, Ann, Leadbitter, Kathy, Salomone, Erica, Cole-Fletcher, Rachel, Tobin, Hannah, Gammer, Isobel, Lowry, Jessica, Vamvakas, George, Byford, Sarah, Aldred, Catherine, Slonims, Vicky, McConachie, Helen, Howlin, Patricia, Parr, Jeremy R, Charman, Tony, and Green, Jonathan

Abstract

Background It is not known whether early intervention can improve long-term autism symptom outcomes. We aimed to follow-up the Preschool Autism Communication Trial (PACT), to investigate whether the PACT intervention had a long-term effect on autism symptoms and continued effects on parent and child social interaction. Methods PACT was a randomised controlled trial of a parent-mediated social communication intervention for children aged 2–4 years with core autism. Follow-up ascertainment was done at three specialised clinical services centres in the UK (London, Manchester, and Newcastle) at a median of 5·75 years (IQR 5·42–5·92) from the original trial endpoint. The main blinded outcomes were the comparative severity score (CSS) from the Autism Diagnostic Observation Schedule (ADOS), the Dyadic Communication Assessment Measure (DCMA) of the proportion of child initiatiations when interacting with the parent, and an expressive-receptive language composite. All analyses followed the intention-to-treat principle. PACT is registered with the ISRCTN registry, number ISRCTN58133827. Findings 121 (80%) of the 152 trial participants (59 [77%] of 77 assigned to PACT intervention vs 62 [83%] of 75 assigned to treatment as usual) were traced and consented to be assessed between July, 2013, and September, 2014. Mean age at follow-up was 10·5 years (SD 0·8). Group difference in favour of the PACT intervention based on ADOS CSS of log-odds effect size (ES) was 0·64 (95% CI 0·07 to 1·20) at treatment endpoint and ES 0·70 (95% CI −0·05 to 1·47) at follow-up, giving an overall reduction in symptom severity over the course of the whole trial and follow-up period (ES 0·55, 95% CI 0·14 to 0·91, p=0·004). Group difference in DCMA child initiations at follow-up showed a Cohen's d ES of 0·29 (95% CI −0.02 to 0.57) and was significant over the course of the study (ES 0·33, 95% CI 0·11 to 0·57, p=0·004). There were no group differences in the language composite at follow-up (ES 0·15, 95% CI, Background It is not known whether early intervention can improve long-term autism symptom outcomes. We aimed to follow-up the Preschool Autism Communication Trial (PACT), to investigate whether the PACT intervention had a long-term effect on autism symptoms and continued effects on parent and child social interaction. Methods PACT was a randomised controlled trial of a parent-mediated social communication intervention for children aged 2–4 years with core autism. Follow-up ascertainment was done at three specialised clinical services centres in the UK (London, Manchester, and Newcastle) at a median of 5·75 years (IQR 5·42–5·92) from the original trial endpoint. The main blinded outcomes were the comparative severity score (CSS) from the Autism Diagnostic Observation Schedule (ADOS), the Dyadic Communication Assessment Measure (DCMA) of the proportion of child initiatiations when interacting with the parent, and an expressive-receptive language composite. All analyses followed the intention-to-treat principle. PACT is registered with the ISRCTN registry, number ISRCTN58133827. Findings 121 (80%) of the 152 trial participants (59 [77%] of 77 assigned to PACT intervention vs 62 [83%] of 75 assigned to treatment as usual) were traced and consented to be assessed between July, 2013, and September, 2014. Mean age at follow-up was 10·5 years (SD 0·8). Group difference in favour of the PACT intervention based on ADOS CSS of log-odds effect size (ES) was 0·64 (95% CI 0·07 to 1·20) at treatment endpoint and ES 0·70 (95% CI −0·05 to 1·47) at follow-up, giving an overall reduction in symptom severity over the course of the whole trial and follow-up period (ES 0·55, 95% CI 0·14 to 0·91, p=0·004). Group difference in DCMA child initiations at follow-up showed a Cohen's d ES of 0·29 (95% CI −0.02 to 0.57) and was significant over the course of the study (ES 0·33, 95% CI 0·11 to 0·57, p=0·004). There were no group differences in the language composite at follow-up (ES 0·15, 95% CI

Published
2016

3. Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial

Author

Pickles, Andrew, Le Couteur, Ann, Leadbitter, Kathy, Salomone, Erica, Cole-Fletcher, Rachel, Tobin, Hannah, Gammer, Isobel, Lowry, Jessica, Vamvakas, George, Byford, Sarah, Aldred, Catherine, Slonims, Vicky, McConachie, Helen, Howlin, Patricia, Parr, Jeremy R, Charman, Tony, Green, Jonathan, Pickles, A, Le Couteur, A, Leadbitter, K, Salomone, E, Cole-Fletcher, R, Tobin, H, Gammer, I, Lowry, J, Vamvakas, G, Byford, S, Aldred, C, Slonims, V, Mcconachie, H, Howlin, P, Parr, J, Charman, T, and Green, J

Subjects
Medicine(all), Parents, Behavior Therapy, Autism Spectrum Disorder, Medicine (all), Communication, Early Intervention, Educational, Humans, Articles, Autistic Disorder, Child, Follow-Up Studies
Abstract

Background It is not known whether early intervention can improve long-term autism symptom outcomes. We aimed to follow-up the Preschool Autism Communication Trial (PACT), to investigate whether the PACT intervention had a long-term effect on autism symptoms and continued effects on parent and child social interaction. Methods PACT was a randomised controlled trial of a parent-mediated social communication intervention for children aged 2–4 years with core autism. Follow-up ascertainment was done at three specialised clinical services centres in the UK (London, Manchester, and Newcastle) at a median of 5·75 years (IQR 5·42–5·92) from the original trial endpoint. The main blinded outcomes were the comparative severity score (CSS) from the Autism Diagnostic Observation Schedule (ADOS), the Dyadic Communication Assessment Measure (DCMA) of the proportion of child initiatiations when interacting with the parent, and an expressive-receptive language composite. All analyses followed the intention-to-treat principle. PACT is registered with the ISRCTN registry, number ISRCTN58133827. Findings 121 (80%) of the 152 trial participants (59 [77%] of 77 assigned to PACT intervention vs 62 [83%] of 75 assigned to treatment as usual) were traced and consented to be assessed between July, 2013, and September, 2014. Mean age at follow-up was 10·5 years (SD 0·8). Group difference in favour of the PACT intervention based on ADOS CSS of log-odds effect size (ES) was 0·64 (95% CI 0·07 to 1·20) at treatment endpoint and ES 0·70 (95% CI −0·05 to 1·47) at follow-up, giving an overall reduction in symptom severity over the course of the whole trial and follow-up period (ES 0·55, 95% CI 0·14 to 0·91, p=0·004). Group difference in DCMA child initiations at follow-up showed a Cohen's d ES of 0·29 (95% CI −0.02 to 0.57) and was significant over the course of the study (ES 0·33, 95% CI 0·11 to 0·57, p=0·004). There were no group differences in the language composite at follow-up (ES 0·15, 95% CI −0·23 to 0·53). Interpretation The results are the first to show long-term symptom reduction after a randomised controlled trial of early intervention in autism spectrum disorder. They support the clinical value of the PACT intervention and have implications for developmental theory. Funding Medical Research Council. Background It is not known whether early intervention can improve long-term autism symptom outcomes. We aimed to follow-up the Preschool Autism Communication Trial (PACT), to investigate whether the PACT intervention had a long-term effect on autism symptoms and continued effects on parent and child social interaction. Methods PACT was a randomised controlled trial of a parent-mediated social communication intervention for children aged 2–4 years with core autism. Follow-up ascertainment was done at three specialised clinical services centres in the UK (London, Manchester, and Newcastle) at a median of 5·75 years (IQR 5·42–5·92) from the original trial endpoint. The main blinded outcomes were the comparative severity score (CSS) from the Autism Diagnostic Observation Schedule (ADOS), the Dyadic Communication Assessment Measure (DCMA) of the proportion of child initiatiations when interacting with the parent, and an expressive-receptive language composite. All analyses followed the intention-to-treat principle. PACT is registered with the ISRCTN registry, number ISRCTN58133827. Findings 121 (80%) of the 152 trial participants (59 [77%] of 77 assigned to PACT intervention vs 62 [83%] of 75 assigned to treatment as usual) were traced and consented to be assessed between July, 2013, and September, 2014. Mean age at follow-up was 10·5 years (SD 0·8). Group difference in favour of the PACT intervention based on ADOS CSS of log-odds effect size (ES) was 0·64 (95% CI 0·07 to 1·20) at treatment endpoint and ES 0·70 (95% CI −0·05 to 1·47) at follow-up, giving an overall reduction in symptom severity over the course of the whole trial and follow-up period (ES 0·55, 95% CI 0·14 to 0·91, p=0·004). Group difference in DCMA child initiations at follow-up showed a Cohen's d ES of 0·29 (95% CI −0.02 to 0.57) and was significant over the course of the study (ES 0·33, 95% CI 0·11 to 0·57, p=0·004). There were no group differences in the language composite at follow-up (ES 0·15, 95% CI −0·23 to 0·53). Interpretation The results are the first to show long-term symptom reduction after a randomised controlled trial of early intervention in autism spectrum disorder. They support the clinical value of the PACT intervention and have implications for developmental theory. Funding Medical Research Council.

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4. Classroom displays-Attraction or distraction? Evidence of impact on attention and learning from children with and without autism.

Author

Hanley M, Khairat M, Taylor K, Wilson R, Cole-Fletcher R, and Riby DM

Subjects
Child, Eye Movement Measurements, Female, Humans, Male, Attention physiology, Autism Spectrum Disorder physiopathology, Learning physiology, Schools, Visual Perception physiology
Abstract

Paying attention is a critical first step toward learning. For children in primary school classrooms there can be many things to attend to other than the focus of a lesson, such as visual displays on classroom walls. The aim of this study was to use eye-tracking techniques to explore the impact of visual displays on attention and learning for children. Critically, we explored these issues for children developing typically and for children with autism spectrum disorder (ASD). Both groups of children watched videos of a teacher delivering classroom activities-2 of "story-time" and 2 mini lessons. Half of the videos each child saw contained high levels of classroom visual displays in the background (high visual display [HVD]) and half had none (no visual display [NVD]). Children completed worksheets after the mini lessons to measure learning. During viewing of all videos children's eye movements were recorded. The presence of visual displays had a significant impact on attention for all children, but to a greater extent for children with ASD. Visual displays also had an impact on learning from the mini lessons, whereby children had poorer learning scores in the HVD compared with the NVD lesson. Individual differences in age, verbal, nonverbal, and attention abilities were important predictors of learning, but time spent attending the visual displays in HVD was the most important predictor. This novel and timely investigation has implications for the use of classroom visual displays for all children, but particularly for children with ASD. (PsycINFO Database Record, ((c) 2017 APA, all rights reserved).)

Published
2017
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5. The interplay between anxiety and social functioning in Williams syndrome.

Author

Riby DM, Hanley M, Kirk H, Clark F, Little K, Fleck R, Janes E, Kelso L, O'Kane F, Cole-Fletcher R, Allday MH, Hocking D, Cornish K, and Rodgers J

Subjects
Adolescent, Adult, Child, Female, Humans, Male, Parents psychology, Young Adult, Anxiety, Social Behavior, Williams Syndrome psychology
Abstract

The developmental disorder Williams syndrome (WS) has been associated with an atypical social profile of hyper-sociability and heightened social sensitivity across the developmental spectrum. In addition, previous research suggests that both children and adults with WS have a predisposition towards anxiety. The current research aimed to explore the profiles of social behaviour and anxiety across a broad age range of individuals with the disorder (n = 59, ages 6-36 years). We used insights from parental reports on two frequently used measures, the Spence Children's Anxiety Scale (SCAS-P) and the Social Responsiveness Scale (SRS). Severity of anxiety was correlated with a greater degree of social dysfunction as measured by the SRS in this group. We split the group according to high or low anxiety as measured by the SCAS-P and explored the profile of social skills for the two groups. Individuals high and low in anxiety differed in their social abilities. The results emphasise the need to address anxiety issues in this disorder and to consider how components of anxiety might relate to other features of the disorder.

Published
2014
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