Completed Research 2013-2014
The following studies have finished recruitment. A summary of findings is added once the research is fully completed.
Why is this research being done?
Colour is important in everyday life. It helps us to decide what clothes we like to wear or the food that we may like to eat. Some children on the autism spectrum show particular interest in or avoid certain colours, for example, wearing or not wearing clothes of a particular colour, or wanting to eat or avoid certain foods. Understanding how children see colours may help us to understand the prevalence of colour-affected behaviours in autism and how children’s behaviour may be affected.
Who are we recruiting?
We are inviting young people on the autism spectrum age 8-16 and their parents to take part in the research. We are recruiting families both through Daslne and through local schools.
What will the researchers be doing?
The researcher, Matthew Cranwell, asks the young people to complete some computer-based and paper-based games about colour. These games investigate the child’s ability to see the differences between colours, how they name colours and also the sorts of colours that they like and do not like. Parents are asked to complete two brief questionnaires about their child’s colour preferences and social behaviour.
How is Daslne involved?
Daslne has agreed to contact families in the region who may be interested in taking part in the research. Families of young people on the autism spectrum age 8-16 will receive information about the project and consent forms from Daslne. If families would like to take part they are asked to complete the consent forms and return them to the researcher, Matthew Cranwell at Newcastle University.
Who is funding the research?
The research is being funded by the Newcastle Vision Fund and the Estate of David Murray Garside.
For further information or a summary of findings please contact Matthew Cranwell or Anya Hurlbert on:
m.b.cranwell@newcastle.ac.uk or anya.hurlbert@ncl.ac.uk
Why is this research being done?Many young people on the autism spectrum experience anxiety. This study aims to find out more about the experience of anxiety for young people on the autism spectrum and how this may link with some of their behaviours. These behaviours include things like hand flapping, having to do something a certain way each time, and playing the same computer game over and over again. We hope that the results from this study will help inform the development of anxiety treatments for young people on the autism spectrum.
Who are we recruiting?
We are inviting young people on the autism spectrum age 14-18 (without a learning disability) and their parents to take part in the research. We are recruiting families both through Daslne and through local schools.
What will the researchers be doing?
The researcher, Caroline Joyce, will ask parents of young people on the autism spectrum to complete some questionnaires to be returned by post that ask about their child’s likes and dislikes and the things they do. She will also meet with young people either in their home or at school as they prefer. She will ask them to complete some questionnaires that ask about the things they like and dislike and the things they do. She will also offer young people the opportunity to take part in a further part of the study where they can talk with Caroline in more detail if they wish.
How is Daslne involved?
Daslne has agreed to contact families in the region who may be interested in taking part in the research. Families of young people on the autism spectrum age 14-18 will receive information about the project and consent forms from Daslne. If families would like to take part they are asked to complete the consent forms and return them to the researcher, Caroline Joyce at Newcastle University.
Who is funding the research?
The research is being funded partly by the Doctorate in Clinical Psychology at Newcastle University and partly by Northumberland Tyne and Wear NHS Trust.
What was the study hoping to achieve?
This study aimed to add to what is currently understood about the experience of anxiety in young people with ASD, and how this may relate to restricted and repetitive behaviours, by gaining information directly from young people.
What did we do?
Young people with ASD and their parents completed questionnaire measures about repetitive behaviours, anxiety, and intolerance of uncertainty. Some young people also took part in a semi-structured interview exploring an example of a repetitive behaviour.
Who took part?
Nineteen families were recruited through local schools, Daslne (local ASD database) and social media. There were six families where only the parent took part. Thirteen young people aged between 13 and 20 completed questionnaires and ten of these young people also took part in a semi-structured interview.
What did the study find?
This study supported findings from other studies, demonstrating a significant positive relationship between parent reported repetitive behaviours and anxiety in this sample of young people with ASD. This relationship was also shown to be present in young person self-report for the first time.
The young people who were interviewed were able to talk about their repetitive behaviours with varying levels of insight. Five themes were identified in the thematic analysis of the interview data. Many of the young people reported enjoying their repetitive behaviour, for example repetitively listening to music or having an item or subject that they are really interested in. In addition the interview data suggested a relationship between anxiety and repetitive behaviour for at least some of the young people.
What do the findings mean?
The study has demonstrated that young people with ASD can self-report and show insight in to their repetitive behaviours, and has replicated previous findings based on parent report. The study has important implications for future research and clinical practice. The findings provide support for the idea that some repetitive behaviours may act as coping strategies for anxiety.
For further information or a summary of findings please contact Caroline Joyce or Jacqui Rodgers on:
c.e.joyce2@ncl.ac.uk or Jacqui.Rodgers@ncl.ac.uk
Doctorate in Clinical Psychology
School of Psychology
4th Floor, Ridley Building
Newcastle Upon Tyne
NE1 7RU
Phone: 0191 222 7925
Engaging in Autism Research: What is the opinion of the autism community across Europe on the study of early signs of autism in infancy.
What will the researchers be doing?: They’ve been using an online survey, circulated across Europe, to explore how the autism community feels about research to identify the earliest signs of autism. The survey is targeted at all members of the autism community, including autistic adults, parents of children with autism, practitioners and teachers.
The survey was designed by an international group of researchers and based on data collected from six focus groups in three countries. Focus groups were with autistic adults, parents of children with and without autism, and varied autism practitioners including doctors, teachers, and therapists.
How is DASLne involved? DASL reviewed the study and agreed to circulate the online survey link to families on the database.
Who is funding the research? The study has no independent funding but is supported by the European Co-operation on Science and Technology Action, Enhancing the Scientific Study of Early Autism. The lead researcher is employed by the University of Edinburgh. In addition, the study findings will be synthesized into a short guidance document for parents new either to autism or to technology, to be published and circulated by the National Autistic Society.
Contact details: The lead researcher is Sue Fletcher-Watson. You can reach her by phone on 0131 651 6356 or by email to sue.fletcher-watson@ed.ac.uk You can also find out more about this study and others on www.dart.ed.ac.uk and if you are on Twitter you can follow her tweets @SueReviews
Why is this research being done?
Many children with ASD experience a lot of anxiety. There are some widely used measures of anxiety for typically developing children however none have been designed specifically with children with ASD in mind.
Research suggests that children with ASD experience anxiety in ways that differ from typically developing children. This means that the measures of anxiety for typically developing children may not work as well with children with ASD. A research team at Newcastle University is currently developing a measure of anxiety especially for children with ASD. This is important because it will enable more accurate assessment, and enhance evaluation of therapies for children with ASD.
What will the researchers be doing?
The researchers are currently consulting the parents of and the professionals who work with children with ASD for their views on the new measure of anxiety for children with ASD. When the new measure is finished the researchers will ask 200 parents and children with ASD to try it out in a postal survey. The researchers will put the information from the completed questionnaires into a computer dataset and run some analyses to see how well the new measure of anxiety works.
How is Daslne involved?
The study aims to recruit 200 parents and children aged between 8-15 years, who have a diagnosis of ASD. Famiies are invited whether or not their child has anxiety. Daslne has agreed to contact parents and invite their participation in the research. If a family would like to participate, they will be asked to sign a consent form and complete questionnaire packs including a copy of the new anxiety measure. The families will complete the questionnaires at home and then post them back to the university.
Who is funding the research?
The research is being funded by the Baily Thomas charity.
If you would like more information, or have any questions about this study, please contact us using the details below.
Sarah Wigham
Summary of Findings
Background
Children with ASD often experience high anxiety, which can have a significant impact on many aspects of their lives. The way in which anxiety may present in children with ASD might differ from anxiety in children without ASD but no methods of assessing anxiety have been specifically designed for young people with ASD. This research, funded by the Baily Thomas Foundation, working with young people with ASD and their parents recruited through Daslne and ASD-UK, aimed to address this gap.
What we did
A widely used measure to assess anxiety in typically developing children is the Revised Child Anxiety and Depression Scale (RCADS). The goal of our study was to adapt the RCADS to make it suitable for use with young people with ASD. We did this by first of all talking to parents of young people with ASD about the content of the original measure and our ideas about the inclusion of some new items to assess anxiety related to uncertainty, sensory issues and phobias. Having taken their advice, we then developed an adapted measure which we sent to children with ASD and their parents, for completion alongside a range of other questionnaires. Over 170 families responded. This enabled us to undertaken analyses of these responses and develop the first anxiety measure specifically developed for young people with ASD.
The results
The new measure, the Anxiety Scale for Children - ASD (ASC-ASD) has four anxiety related subscales: Performance anxiety, Separation anxiety, Anxious arousal and Uncertainty. We were able to develop two versions of the measure, one for completion by parents and one for completion by young people themselves if they are over the age of 8. Our preliminary evidence indicates the ASC-ASD is valid and reliable for measuring anxiety in children with ASD. This is important because it will facilitate better assessment, guide treatment, and enhance evaluation of therapies. The measure will be freely available to researchers and clinicians soon via our cargo-ne website. We hope to undertake further evaluation of the measure in the future. We are enormously grateful to all of the families to participated in our study.
Why is this research being done?
Research suggests that parents of children with Autism Spectrum Disorder (ASD) experience higher levels of stress than parents of children with other disabilities and typically developing children. Some initial research suggests that Restricted Interests and Repetitive Behaviours (RRB) may be linked with higher levels of parent stress, but further research is needed to better understand this. We hope that gaining a better understanding of parents’ experiences of stress will help professionals in their work with families, and it may inform the development of interventions in the future. In particular this study focuses on parents of children with ASD and a Learning Disability, and there is less research which includes these families.
What will the researchers be doing?
The researcher, Rebecca Alegbo, will meet with parents, usually in their own home. Parents will be asked to complete some questionnaires about their child’s behaviours and their own experiences of stress. These questionnaires will take around 50 minutes to complete.
How is Daslne involved?
Daslne has agreed to contact parents of children with ASD and a Learning Disability to invite them to participate in the research. If they are interested in participating, an expression of interest form is completed and returned to Rebecca.
Who is funding the research?
The research is being funded partly by the Doctorate in Clinical Psychology at Newcastle University and partly by Northumberland Tyne and Wear NHS Trust.
Summary of Findings
What was the study hoping to achieve?
Research suggests that parents of children with Autism Spectrum Disorder experience higher levels of stress than parents of children with other disabilities and typically developing children. Restricted and Repetitive behaviours are one of the core groups of features of Autism Spectrum Disorder and we wanted to find out whether they were one of the reasons why parents might experience higher levels of stress. In particular this study focused on parents of children with Autism Spectrum Disorder and a Learning Disability, as generally there is limited research which includes these families. We hope that gaining a better understanding of parents’ experiences of stress will help professionals in their work with families, and it may inform the development of interventions in the future.
What did we do?
The researcher, Rebecca Alegbo, met with parents, usually in their own home. Parents were asked to complete questionnaires about their child’s behaviours and their own experiences of stress.
Who took part?
Thirty one parents of children with Autism Spectrum Disorder and a Learning Disability, aged between six and 15 years old, took part in this study.
What did the study find?
We found that higher levels of restricted and repetitive behaviours were associated with higher levels of parent stress, as we had predicted. Parents reported finding Insistence on Sameness behaviours (for example, maintaining a strict routine) more stressful than Repetitive Sensory/Motor behaviours (for example, flapping or spinning). We also found that some of the questions on one of the questionnaires were not relevant for parents of children who do not communicate with speech.
What do the findings mean?
The findings suggest that restricted and repetitive behaviours can be stressful for parents. It also seems that Insistence on Sameness behaviours in particular can be stressful, for example if a child insists on their routine staying the same or insists on things in the house staying the same. We have made some suggestions for future research, including getting a better understanding of what it is about these behaviours that parents find stressful; for example, it could be the impact on family life, or the child’s distress when it is not possible to keep things the same. We also recommend developing a measure of Autism Spectrum Disorder features that can be used with parents of children who do not communicate with speech, so that more research can be done with these families.
For further information or a summary of findings please contact:
For further information or a summary of findings please contact:
Rebecca.Alegbo@ncl.ac.uk or Jacqui.Rodgers@ncl.ac.uk
Doctorate in Clinical Psychology
School of Psychology
4th Floor, Ridley Building
Newcastle Upon Tyne
NE1 7RU
Phone: 0191 2227925
Why is this research being done?
Anxiety is a significant problem for many children with an Autism Spectrum Disorder (ASD). Some children with ASD can feel especially anxious when faced with uncertain situations or events, for example some children might find it difficult to go to a friend’s house for tea without knowing exactly what is going to happen and what they are going to eat for tea. This is known as ‘intolerance of uncertainty’. Intolerance of uncertainty has been linked with the presence of anxiety in adults and children without ASD and interventions are beginning to be developed for these groups; however this work has not been extended to children with ASD. The aim of this research project is to develop a parent based group intervention, which provides parents with strategies and tools to assist their child to develop a more flexible approach to uncertainty.
What will the researchers be doing?
The study aims to recruit 12 parents of children aged between 8 and 14 years who have a diagnosis of ASD. Parents are asked to attend eight weekly, two hour sessions in a group with approximately five other parents. The researchers will run two groups in total.
The researchers are developing the intervention sessions using information gathered from previous research and consultation with parents and professionals via focus groups. The eight sessions involve sharing ideas and experiences of intolerance of uncertainty, and discussion and exploration of helpful strategies that parents and children can use to cope with uncertainty.
The aim of the research project at this stage is to assess the feasibility and acceptability of intervention therefore the researchers will be asking parents for their opinions on the sessions and making changes along the way. We will also ask parents to fill in some questionnaires about intolerance of uncertainty, anxiety and their child’s autism. After the eight sessions, parents will be asked to attend an individual follow-up appointment to discuss how the intervention went and what benefits, if any, they have observed in their child.
How is Daslne involved?
Daslne will be involved by approaching families who may be interested in participating in our research project. If a parent would like to participate, an Expression of Interest form is completed and returned directly to the research team.
Who is funding the research?
The CUES project is being funded by The Children’s Foundation.
Contact details
If you would like further information about this study please contact:
Dr Jacqui Rodgers (Lead Researcher)
Jacqui.rodgers@ncl.ac.uk
Tel: 0191 208 7562
Anna Hodgson (Research Assistant)
Why is this research being done?
People with autism often use a lot of technology in their leisure time, and may develop important skills by working and learning in this way. On the other hand, there are specific reasons to be cautious about the use of technology by children with autism including the risk of triggering unhelpful obsessive and ritualized behaviours, and the concern that technology time gets in the way of real-world social interactions. This study aims to find out more about how children with autism use technology at home, alone or with their parents, and to use that information to begin to provide evidence-based guidelines to parents.
What will the researchers be doing?
They have created an online survey which takes about 15 – 20 minutes to complete, designed to ask parents to describe how their child uses technology and how they, as a parent, are involved in that process. The survey is targeted at parents who are already users of technology to support their child with autism. The goal is to gather the views of experienced parents in order to then provide information to people who are new to this approach.
How is DASLne involved?
DASL have reviewed the study and agreed to circulate the online survey link to families on the database.
Who is funding the research?
The study has no independent finding. The lead researcher is employed by the University of Edinburgh. In addition, the study findings will be synthesized into a short guidance document for parents new either to autism or to technology, to be published and circulated by the National Autistic Society.
Contact details:
The lead researcher is Sue Fletcher-Watson. You can reach her by phone on 0131 653 6356 or by email to sue.fletcher-watson@ed.ac.ukYou can also find out more about this study and others onwww.dart.ed.ac.uk and if you are on Twitter you can follow her tweets, including autism-specific app reviews, @SueReviews
Why is this research being done?
Children and young people are frequently asked to use rating scales to complete questionnaires. However, very little is known about how appropriate different types of rating scales are for collecting children’s views. Our research team at Newcastle University want to gain a better understanding of the skill of scaling and the most appropriate format for administration of self-report measures in children with an autism spectrum disorder (ASD), as well as typically developing children. It is anticipated that the findings could inform the development of future child self-report measures and also increase our understanding of self-report abilities in children with ASD.
What will the researchers be doing?
During the first appointment children will complete some puzzles and questions which are designed to measure cognitive ability. They will then be given some scenarios and asked to answer questions about these using a five point scale. The children will also complete a questionnaire about different formats of rating scales. Parents will also be asked to complete a questionnaire which measures their child’s ASD symptoms as they occur in natural social settings. The time involved should be no more than 60 minutes.
During the second appointment, approximately 1 month later, children will repeat the scaling task in which they are given scenarios and asked to answer questions about these. The time involved should be no more than 30 minutes.
The researcher will see participants in their own home or at Newcastle University premises if preferred (travel costs will be reimbursed).
How is Daslne involved?
The study aims to recruit 24 parents and children aged between 6-11 years, who have a diagnosis of ASD and attend a mainstream primary school. Daslne has kindly agreed to contact parents of children with ASD to invite their participation in the research. If a family would like to participate, a consent form is completed and returned directly to the research team.
Who is funding the research?
The research is being funded partly by the Doctorate in Clinical Psychology at Newcastle University and partly by Northumberland Tyne and Wear NHS Trust.
If you would like more information, or have any questions about this study, please contact us using the details below.
Laura Tavernor
0191 222 7925
Why is this research being done?
ASD has long been linked with impairments in the self-concept. However, the nature of these impairments is as yet unclear.
Often, the self concept is divided up into the psychological self concept and the physical self concept. It is thought that the psychological self concept is impaired in people with ASD, while the physical self-concept remains intact. The current studies seek to explore this further by comparing and contrasting the physical and psychological conceptions of the self among children with autism.
Research into the self-concept is of paramount importance in the study of autism since the self-concept is seen as underpinning most aspects of human behaviour. Simulation theory (Goldman, 2006) outlines the idea that we base our interactions with others and the way in which we think about others on the way in which we conceive of ourselves and our own minds. When applied to the area of autism, this could suggest that many of the impairments in social communication and reciprocity which are seen in people with autism could be due, to a large degree, to an impairment of some kind within the self-concept. Therefore a better understanding of the self-concept in autism is key to developing a better understanding of the disorder as a whole. This in turn will allow more successful intervention and teaching strategies to be put in place for those with autism which could have a huge and very positive impact both on the lives of those with the disorder and on the lives of their caregivers and families.
What will the researchers be doing?
The researcher, Emma Grisdale, will administer a number of tasks to children aged between 6 and 10 years. These tasks are designed to test memory and spatial awareness. One task involves a visual illusion and another asks the children to describe themselves. In addition to this, parents will be asked to complete a short questionnaire about various ASD features such as repetitive behaviours.
Children will be seen either at school or in the psychology department at Durham University (travel costs will be reimbursed). The testing session will take no more than one hour to complete.
How is Daslne involved?
Daslne has agreed to contact parents of children with ASD to invite their participation in the research. If they are interested in participating, an expression of interest form is completed and returned to Emma.
Who is funding the research?
The research is being funded by a PhD studentship awarded to Emma.
Contact Details:- Emma Grisdale, Department of Psychology, Durham University, South Road, Durham, DH1 3LE
Tel. No.: 07958696231
Email: emma.grisdale@dur.ac.uk
Why is the research being done?
The study is part of a programme of work being carried out from Newcastle University to help identify factors that may influence the development of anxiety in young people with a diagnosis of ASD. The findings could provide the building blocks for creating interventions to reduce symptoms of anxiety.
What does the study involve?
The main researcher is Nooraini Darus. Nooraini is a PhD student. She is supervised by Dr Jacqui Rodgers (Senior Lecturer, Institute of Neuroscience, Newcastle University) and Dr Debbie Riby (Lecturer, School of Psychology, Newcastle University). The study aims to recruit 30-40 parents and young people aged between 8-16 years who have fluent language skills, a diagnosis of ASD and no other developmental conditions. The young people will complete some assessments that are like games so that we can investigate their thinking styles. They will also complete some questionnaires about their worries that have been designed for children. Parents will complete some questionnaires about their child too. It will take approximately 60 minutes for children and their parents to complete all of the tasks. Families can be seen in their own home or if they prefer at the University.
How is Daslne involved?
Daslne has kindly agreed to contact parents of children with ASD to invite their participation in the research.
Who is funding the research?
The research is being funded through a PhD studentship awarded to Nooraini by the Ministry of Health, Malaysia.
Contacts:
Nooraini Darus: n.darus@ncl.ac.uk
Dr Jacqui Rodgers: Jacqui.rodgers@ncl.ac.uk
Why is this research being done?
This project aims to explore the additional difficulties that children with ASD have (examples include sleep problems / feeding difficulties / hyperactivity problems). A recent study by Daslne had indicated that more than half of children had four or more areas of difficulty that affected them each week. We hope to explore the relationships between these different difficulties in children with ASD, their impact on families and parents’ experiences of the available services to improve these difficulties. This is the biggest study in UK, so far, covering additional difficulties in children with ASD and their impact and thus a great opportunity for parents to express themselves and be heard.
What will the researchers be doing?
This research will be done in two stages. For the first stage, we will use parent questionnaires to understand the spectrum and severity of difficulties and their impact. We will use available information in two large databases in UK – Daslne and ASD –UK (Autism Spectrum Database –UK) to understand difficulties for each child and use appropriate questionnaires. We plan to use information from the recent update in Daslne and if you inadvertently missed the chance to update information about your child, kindly contact Mary Johnson, Daslne Co-ordinator and she will arrange to send you a secure link.
In the second stage, we will hold discussions with a select group of parents and their professionals about services available to meet these additional difficulties of children with ASD.
How is Daslne involved
Daslne and ASD-UK are helping the researcher to recruit parents of children aged 2-18 years.
Who is funding the research
The study is funded by Autistica, UK through an Autism Fellowship grant.
Contacts
Dr. Beena Koshy – b.koshy@ncl.ac.uk
Newcastle University, Institute of Neuroscience.
Summary of Findings
ASD+ Study – Co-existing conditions in children with Autism Spectrum Disorder
The ASD+ study was undertaken to understand the severity and the impact of co-existing emotional and behavioural conditions (for example: hyperactivity, anxiety, feeding and sleep problems) on the families of children and young people with ASD. 836 families belonging to Daslne were contacted and 259 (31%) responded. Families in the national database, ASD-UK, also took part, making it the largest study so far to analyse the impact of co-existing conditions on families of children with ASD (658 in all). Parents completed questionnaires about co-existing conditions, the impact on family, and the extent to which they had received helpful services.
A large number of families (80%) reported at least one moderate-severely impairing co-existing condition. Both younger and older children, boys and girls, children with different types of diagnosis of ASD, children with different levels of language ability were likely to present moderate-severely impairing co-existing conditions within the family. However individual conditions varied; for example, parents of younger children reported more under-eating and repetitive behaviours, while parents of older children were more likely to report over-eating and worry. These co-existing conditions in children had significant impact on families (affecting their quality time together, travel, leisure and planning) irrespective of the diagnosis, age and ability level of the child. This study also showed that services can play a role in meeting parents’ needs and lessening this impact.
We hope this study will encourage parents, professionals and policy makers to look ‘beyond the diagnosis of ASD’. These co-existing conditions need to be regularly monitored for children and young people with ASD, irrespective of their age, the type of diagnosis and ability levels. Appropriate support such as specific management strategies should be started as early as possible to reduce the impact of co-existing conditions on families, in addition to autism-specific advice. There is an urgent need for policy makers to develop and build capacity for greater support services.
The study team would like to thank all parents who generously participated in this study. The study was funded by a Fellowship awarded by Autistica to Dr Beena Koshy.
For further information contact Professor Helen McConachie, helen.mcconachie@ncl.ac.uk
Beena Koshy, Jeremy Parr and Helen McConachie
Completed Research 2003-2012
Why is the research being done?
The current research aims to explore memory, imagination and navigation skills in children with a diagnosis of autism, as well as typically developing children. Imagination ability (e.g., thinking about one’s future) and navigation ability (e.g., to use a map to follow a route) have rarely been explored among children with autism, although there is reason to believe that difficulties in these areas may relate to some of the features of autism. We hope to understand better these skills in children, and that this research will help to inform and improve teaching and intervention strategies for individuals with autism.
What will the researchers be doing
For this research, we have designed some fun and rewarding tasks for the children to complete. For example, there is a computerised “memory island” game which assesses their ability to navigate around an island where hidden objects have to be found and remembered. Children also play a memory game which tests their ability to remember objects, backgrounds and object-background pairings. Another task requires children to watch some short animated clips of two triangles and describe what they think is happening in the clips. We also give children some standard tests of cognitive ability. Sometimes we see children in their school and sometimes children and parents are invited into the Psychology Department at Durham University to complete the assessments. The research aims to investigate whether performance on these tasks of memory, imagination and navigation is linked to the severity of ASD in children.
How is Daslne involved
Daslne are very kindly helping Durham University researchers to recruit suitable children aged between 6 and 10 years old with a diagnosis of Autism Spectrum Disorder (ASD). This involves contacting families who fit study criteria to ask them whether they would like to participate in the research.
Who is funding the research
The study is funded by an Economic and Social Research Council Research Grant awarded to Dr Lind (Durham University) and Professor Bowler (City University, London).
Contacts
Dr Sophie Lind sophie.lind@durham.ac.uk
Dr David Williams david.williams@durham.ac.uk
Miss Anna Peel anna.peel@durham.ac.uk
Research Project on Speech in Autism
Why is the research being done?
Research has shown that some people with ASD can have difficulties expressing themselves with the ‘music’ of language (prosody). Even though their other language abilities can be perfectly fine, some people with ASD might be misunderstood if their speech doesn’t have the rhythm and tone that their listeners expect.
We would like people with ASD to help us research speech in ASD. This research will help us develop new therapies for difficulties with prosody, and it will help us understand how speech is affected by issues like having to speak shorter or longer sentences or having to talk to someone you don’t know.
What will the researchers be doing?
We will present participants with sentences to repeat into a microphone. The participants will be seated alone in a sound-treated (not quite soundproof, but quiet!) room where the sentences appear on a computer screen. Participants will also perform a musical test where they hear short rhythms and melodies to repeat into the microphone.
We will also administer some standard tests like a verbal intelligence test that involves answering questions about word meanings and general knowledge. There will also be two cognitive tasks: the Stroop task and a card-sorting task.
Participants will receive £20 for 2 hours of testing, and will be given the option of completing a similar 1 hour long testing session (on the same day or different day) for an additional £10.
How is Daslne involved?
Daslne has approved the research and has agreed to help us find participants 16+yrs for the research.
Who is funding the research?
This research is funded by a British Academy small grant.
If you would like to know more about this research or have any questions please contact Dr Paul Engelhardt or Sean Veld (research assistant) directly by phone or email.
Dr Paul Engelhardt Sean Veld
Senior Lecturer Research assistant
Tel: 0191 227 4771 Email:sean.veld@northumbria.ac.uk
Why is this research being done?
Attention to detail is a thinking style that can be seen in people with Autism Spectrum Disorder (ASD) as well as those without. However, it is more common for those with an ASD to have a greater focus on detail, sometimes at the expense of taking in other information. We are interested in finding out how having an “attention to detail” thinking style might affect how people with an ASD see the world or what they pay attention to. Such visual attention to detail could be described as ‘not seeing the wood for the trees’ or missing the ‘bigger picture’.
It is anticipated that the findings could inform future research for example, through development of clearer measurement for recognising a detailed focussed cognitive style. It also has the potential to promote the development of targeted teaching to build on this cognitive strength.
What will the researchers be doing?
There are two researchers, Sam Crooks and Emma Reid. Sam will be talking to parents about their child’s attention to detail. This will involve an informal interview where parents will be asked to give examples of their child’s attention to detail now, and when they were younger. They will also be asked to complete some questionnaires about different ASD characteristics such as repetitive behaviour and sensory processing.
Emma will administer a number of interactive puzzles and tasks with children aged 5-12 years which are designed to measure their attention to detail. Examples of tasks include a visual search task, drawing, use of building blocks and picture identification.
The researchers will see participants in their own home or a local NHS premises if preferred. The time involved should be no more than 90 minutes.
How is Daslne involved?
Daslne has agreed to contact parents of children with ASD to invite their participation in the research. If they are interested in participating, an expression of interest form is completed and returned to Sam and Emma.
Who is funding the research?
The research is being funded partly by the Doctorate in Clinical Psychology at Newcastle University and partly by Northumberland Tyne and Wear NHS Trust.
Contacts:
Samantha Crooks s.crooks@ncl.ac.uk
Emma Reid e.j.reid@ncl.ac.uk
Professor Helen McConachie Helen.mcconachie@ncl.ac.uk
Dr Jacqui Rodgers Jacqui.rodgers@ncl.ac.uk
Dr Emma Honey emma.honey@ncl.ac.uk
Why is the research being done?
Lots of reports have come out in the UK and worldwide with suggestions about how to improve transition for young people with complex healthcare needs from child healthcare to adult healthcare services. But what is not known is what young people actually experience in health services as they become young adults.
By finding out what young people think is helpful, the research will help improve NHS services for young people. Some young people with ASD who have additional mental health problems will move on to adult healthcare, and others will not.
What will the researchers be doing?
We are asking for young peoples’ help to become researchers with us. We hope to recruit young people (aged 14-18yrs) with ASD who are currently being seen within children and adolescent mental health services for the management of mental health problems, rather than accessing these services primarily for the purpose of diagnosis.
When a young person and their parent(s) join this Transition project, our plan is to be in touch once a year for three years to find out about their experiences and the types of services they have been in contact with.
How is Daslne involved?
Daslne are helping us to identify young people aged 14-18yrs who might be interested in taking part in this TRANSITION research.
Who is funding the research?
This project is part of the Transition Programme: a national research programme funded by the National Institute for Health Research (NIHR).
If you would like to know more about this research or have any questions please contact Professor Ann Le Couteur or Hannah Merrick (research assistant) directly by phone or email.
Ann Le Couteur Hannah Merrick
Professor of Child and Adolescent Psychiatry Research assistant
Tel: 0191 287 5260/62 or 0191 282 1384 Tel: 0191 282 1379 or 075276796
Email: a.s.le-couteur@ncl.ac.uk Email: hannah.merrick@ncl.ac.uk
Parent Group Training Programme for Managing Repetitive Behaviours in young children with Autism Spectrum Disorder
Why is this research being done?
The short-term aim is to conduct a feasibility study of a new parent group intervention to help parents understand and manage their child’s repetitive behaviours. This study will inform the design of a future large-scale study. The objective is to enable parents to have a better understanding of why children with ASD may show several repetitive behaviours, and to manage those behaviours which cause difficulty for the family.
What will the researchers be doing?
The study aims to recruit 36 parents of young children with ASD, aged 3 years to 7 years 11 months, who show several repetitive behaviours. Eighteen parents will be randomly allocated to the intervention (whilst continuing to receive all other services as usual), and 18 to control (services as usual). All families allocated to the control branch of the study will be offered the parent group intervention at a later date. A range of outcome measures will be used to look at any changes in child repetitive behaviours at home and at school, parent management strategies, parent confidence in using strategies and the child’s overall functioning.
What happens at the parent group?
The parent group materials were developed in the North East of England in collaboration with parents. The group runs for 8 sessions and is led by a specialist teacher and other professionals who are very experienced in working with children who have ASD. Each session lasts for 2 hours. The parent group involves information, discussion and sharing of ideas about managing repetitive behaviours. There is also individual support for each family to help tailor behaviour management strategies to their child.
How is Daslne involved?
Daslne is involved by approaching families who may be interested in taking part in this research project.
Who is funding the research?
This research project is funded by National Institute for Health Research (NIHR) Research for Patient Benefit programme.
Contact details
If you would like further information about this study please contact:
Dr Vicki Grahame, Consultant Clinical Psychologist
Tel: 0191 287 5260/62
Email: Victoria.Grahame@ntw.nhs.uk
Professor Ann LeCouteur, Consultant Child & Adolescent Psychiatrist
Tel: 0191 282 1384
Why is the research being done?
Young people with ASD seem to be particularly at risk of developing anxiety. This research aims to explore whether using a virtual reality environment (VRE) may be acceptable and helpful as part of a psychological treatment process for specific anxiety, e.g. supermarkets, dogs.
What will the researchers be doing?
Up to 20 young people with ASD, aged 8-14 years who are verbally fluent, will be recruited. They will participate in up to four 30 minute sessions at the Blue Room facility, a state of the art virtual reality environment near Durham. During each of these sessions they will receive coaching from a psychologist in relaxation techniques and coping self- statements, before entering the virtual reality scenario designed for them and their specific anxiety.
During sessions participants will wear a galvanic skin response sensor (like a wristwatch) which measures bodily reactions. Researchers will also ask the young people to complete the Spence Children’s Anxiety Scale. Parents of participants will be asked to complete the parent version of the Spence Scale and a Social Communication Questionnaire about their child.
How is Daslne involved?
Daslne will be involved by approaching families who may be interested in participating in our research project.
Who is funding the research?
The research is being funded by the Daphne Jackson Trust via a research fellowship to Dr Morag Maskey.
Contact Details
Dr Morag Maskey, Research Fellow: 0191 282 1091 morag.maskey@newcastle.ac.uk
Dr Jeremy Parr, Chief Investigator: 0191 282 5966jeremy.parr@newcastle.ac.uk
Why is the research being done?
It is not well understood why some young people with ASD have problems with anxiety, and others do not. We need better ways of measuring some aspects of how young people think and make decisions. Computer-based games are attractive, and a good way to measure decision-making. If we can satisfy some of the factors that may underlie anxiety in young people with ASD, it may help develop treatment approaches in future.
What will the researchers be doing?
The researchers will ask each young person to play two computer games. While they are playing these games, participants will be wearing a galvanic skin response sensor (like a watch strap, and it measures bodily reactions). Researchers will then ask the young people to complete the Spence Children’s Anxiety Scale, the Screen for Child Anxiety Related Disorders, the Intolerance of Uncertainty Scale and the Weschler Abbreviated Scale of Intelligence (WASI).
Researchers will ask parents of participants to complete parent versions of six questionnaires: the Spence Children’s Anxiety Scale, the Screen for Child Anxiety Related Disorders and the Intolerance of Uncertainty; the Repetitive Behaviours Questionnaire; the Short Sensory Profile; and the Social Responsiveness Scale.
How is Daslne involved?
Daslne will be involved by approaching families who may be interested in participating in our research project.
Who is funding the research?
The research is being funded by Northumberland, Tyne and Wear and Newcastle upon Tyne Hospitals NHS Trusts.
Contact Details
Laura Gray, Research Assistant: 0191 282 5965 laura.gray2@newcastle.ac.uk
Sarah Wigham, Research Associate: 0191 282 5963 sarah.wigham@newcastle.ac.uk
Dr Jacqui Rodgers, Chief Investigator: 0191 2227562 Jacqui.rodgers@ncl.ac.uk
Why is this research being done
The aim of this research is to establish whether “prospective memory” is impaired among children with autism spectrum disorder (ASD). Prospective memory refers to the ability to carry out a planned activity at the appropriate time (e.g., remembering to remove a pan from the stove after 10 minutes or to post a letter when passing a post box). Among typically developing children, prospective memory ability is closely connected to the ability to remember personally-experienced past events (“retrospective memory”). We know that retrospective memory is diminished among children with ASD and so there is good reason to predict that prospective memory will be too, although this has not been demonstrated conclusively. If we find an impairment in prospective memory among children with ASD, we will conduct further research to assess whether techniques that improve memory skills amongst typically developing children also help children with ASD.
What will the researchers be doing
In our research, we will compare the performance of children with ASD and typically developing children (who are very similar to the children with ASD in terms of age and intelligence) on a variety of cognitive-experimental tasks that assess prospective memory and associated abilities
How is Daslne involved
Daslne are helping us to recruit children for this project from across the North-east.
Who is funding the research
The research is funded by the Economic and Social Research Council UK
Contact Details
If you have any questions about this research, or would like to take part in it, please contact Dr David Williams (email:david.williams@durham.ac.uk; telephone: 0191 33 43270).
Survey of needs of families with a child with a diagnosis of ASD living in Northumberland
Why is the research being done?
The Northumberland multi-agency group, who brings together professionals who provide services for children and young people on the autism spectrum, would like to understand more about the needs of families whose son or daughter has a diagnosis of Autism, Autistic Spectrum Disorder (ASD) or Asperger’s syndrome.
This survey is a form of consultation with parents and carers to find out what their needs and priorities are. These views will be used to inform services about how they are currently meeting their needs, and what other help is required. The aim is to provide information that will help with future service planning.
What will the researchers be doing?
How is Daslne involved
Daslne will contact parents of children aged between 4 and 11 on the database and invite them to complete and return the survey.
Who is funding the research
The research is funded by the Northumberland Care NHS Trust and the Northumberland Tyne and Wear NHS Trust.
Contact details:
Stephanie Lai, Trainee Clinical Psychologist
Dr Mark Bagott, Consultant Paediatrician
Telephone: 01670 564030
Parent’s views on how school prepares their children on the autism spectrum for good adult life outcomes
Principal Investigator: Dr Kerstin Wittemeyer, Lecturer at the University of Birmingham
Co-investigators: Prof Tony Charman, James Cusack, Dr Karen Guldberg, Prof Richard Hastings, Prof Patricia Howlin, Dr Natasha Macnab, Dr Sarah Parsons, Dr Liz Pellicano, Dr Vicky Slonims
Start and End Dates: 11th April 2011 – 15th May 2011
Why is the research being done?
This study is looking at the relationship between education and adult outcomes for people on the autism spectrum. We are interested in gathering a range of opinions about what “good outcome” should really look like and how schools in England can best prepare children and young people with autism to reach these goals. We are also exploring how parents are informed by teaching staff about their children’s progress and needs, and how much school involves them in setting educational goals.
What will the researchers be doing?
As part of this study, researchers will:
How is Daslne involved?
Daslne has kindly agreed to contact parents on the database and invite them to visit the project’s website where they will be able to take part in an online survey.
Who is funding the research?
The research is funded by the Autism Education Trust.
Contact details:
Kerstin Wittemeyer 0121 415 8148 k.wittemeyer@bham.ac.uk
Project website:http://www.autismeducationtrust.org.uk/outcomes
Why is the research being done?
With the new Autism Act (2010) there is a legal requirement for local authorities and health services to provide for the needs of adults with autism spectrum disorders. This survey is intended to inform the North East Regional Plan for Autism 2011, and the local plans for each authority. The survey has been commissioned by the North East Autism Consortium (NEAC: www.northeastautismconsortium.co.uk) whose role is to help develop the commissioning of services for adults with autism or ASD.
Daslne and NEAC would like to know what help parents/carers think their young person with ASD will need over the next three years or so ie: what could professionals in education, social care, health services and voluntary organisations provide that would enable young people to achieve their goals?
What will the researchers be doing?
As part of this study the researcher will:-
How is Daslne involved
Daslne will contact parents of young people over the age of 16 on the database and invite them to complete and return the survey.
Who is funding the research
The research is funded by The North East Autism Consortium. Northumberland Tyne and Wear NHS Foundation Trust is the research sponsor for the Survey
Contact details:-
Professor Helen McConachie, Director of Daslne 0191 282 1396 (Email:
H.R.McConachie@newcastle.ac.uk
Mary Johnson, Coordinator of Daslne, 0191 282 1400 (Email:m.johnson@newcastle.ac.uk).
Principal Investigator: Dr Jeremy Parr, Senior Lecturer and Consultant Paediatrician
Co-applicants: Dr Annette Hames, Consultant Clinical Psychologist; Dr Alex Henderson, Consultant Clinical Geneticist; Dr Janice McLaughlin, Director of Policy, Ethics and Life Sciences Research Centre, Dr Tracy Finch, Senior Lecturer in Psychology of Health Care; Deborah Garland, Parent Advisor, National Autistic Society.
Start and End Dates: October 2010 – October 2011
Why is the study being done?
This study is designed to start understanding the opinions of people with ASD, and their relatives’ and clinicians’ views, about clinical genetic testing. While there has been a recent increase in our scientific knowledge of ASD genetics, we do not yet know how family members feel about these findings being used in clinical practice. This project aims to start to understand opinions more, and also develop some questions and research methods that will be used in a full study submission in the future.
What will the study involve?
The study includes a survey questionnaire that has been sent to parents of children and young people with ASD; there will be group consultations with parents; individual interviews with young people aged 16-18 with ASD; a large consultation meeting for family members organised by the National Autistic Society; and questionnaires to ASD clinicians
What is Daslne’s role?
Daslne is helping with recruitment of families by sending out the survey questionnaire to families on the database.
Who is funding the research?
The research is funded by Flexibility and Sustainability Funding, Northumberland, Tyne and Wear NHS Foundation Trust and Newcastle University.
Contact details:
Jeremy Parr 0191 282 1386 jeremy.parr@ncl.ac.uk
Annette Hames 0191 2821382 annette.hames@ncl.ac.uk
Summary of research
This survey focused on people’s knowledge about genetics, and their opinions about possible genetics testing and ASD. A questionnaire was posted to parents in 688 households on the Daslne database, as well as to 135 families of children attending three schools for children with ASD and learning difficulties. Surveys were returned by 377 parents, 328 from Daslne and 49 from schools. 264 replies were from mothers and 113 from fathers. 10% of families had more than one child with a diagnosed ASD and 26% had more than one child with ASD-like symptoms. 18% said that they had relatives with a diagnosed ASD and 59% said that they had relatives with ASD-like symptoms in their extended families. Two parents said that they were diagnosed with ASD themselves, though a further 59 suspected that they had ASD.
Overall, parents were very interested in ASD genetic testing. When asked what they thought about ASD testing if it was available, 54% said that they would want pre-natal testing and 40% thought that pregnancy testing should be available. 42% said that having a child with ASD had affected their decisions about having future children. Parents who had more than one child with ASD-like symptoms, and parents who had relatives with ASD-like symptoms, were more likely to want pregnancy testing. Parents whose children had more severe impairments, or who said that their children were more difficult to manage, were more likely to say that they wanted pre-natal testing and to say that having a child with ASD had affected their decisions to have more children.
Most parents thought that they knew very little about genetic causes of ASD and only 12% recalled that a professional had talked to them about ASD genetics at the time of diagnosis. Many thought that ASD had a genetic cause, and that because they had one or more children with ASD, there would be a greater chance of having another child with ASD than other parents. Just 47 parents correctly estimated the chance of them having another child with ASD as 10-20%, with 62% rating the chance as 50% or more. The more that parents over-estimated the chance, the more likely they were to say that having a child with ASD had affected their decisions to have more children.
What we are doing next
We are hoping to publish these results in academic journals and through the National Autistic Society. We are also hoping to use these results to apply for funding for a larger grant, to further investigate what family members think about possible genetic testing for ASD. We would like to thank all participants for their help.
For further information contact Jeremy.parr@ncl.ac.uk
This research is being undertaken by Ruth Jamieson, Trainee Clinical Psychologist, as part of the Doctorate in Clinical Psychology at Newcastle University, supervised by Dr Jacqui Rodgers, Senior Lecturer, and Professor Helen McConachie, Consultant Clinical Psychologist.
Why is this research being done?
Anxiety is one of the most common additional problems in young people with Autism Spectrum Disorder (ASD). Research suggests that children with ASD are vulnerable to anxiety as a result of a number of ASD-related factors (e.g. heightened sensitivity to noise, dislike of change, etc). However, anxiety may be overlooked if behaviours of young people are thought to be ‘just autism’, and they may not receive appropriate help.
In measuring anxiety, rating scales validated with typically developing children are routinely used with young people with ASD. However, it seems plausible that anxiety is conceptually different in young people with ASD. Thus a “one size fits all” approach to understanding, assessing and treating anxiety in young people with ASD may be missing the mark.
What will the researchers be doing?
The purpose of this research is to obtain an understanding of how anxiety presents in children and adolescents with ASD and how it can be differentiated from the characteristics of ASD.
All participants are asked to undertake two main procedures:
To complete the Spence Children’s Anxiety Scale – parent version (SCAS-P)
To undertake a semi-structured interview. In the interview, parents are asked to give examples of situations in which their child was anxious. They are then asked about their child’s behaviour, thoughts, feelings and bodily sensations in these anxiety-provoking situations.
Two groups of participants are included in the study:
12 parents of children with ASD
12 parents of typically developing anxious children
How is Daslne involved?
Daslne has agreed to contact parents of children with ASD invite their participation in the research. If they are interested in participating, an expression of interest form is completed and returned to Ruth Jamieson.
Who is funding the research?
The research is being funded partly by the Doctorate in Clinical Psychology at Newcastle University and partly by Northumberland Tyne and Wear NHS Trust.
Contact details:
Ruth Jamieson
Trainee Clinical Psychologist
Doctorate in Clinical Psychology
School of Psychology
Ridley Building
Newcastle University
NE1 7RU
Email: ruth.jamieson@ncl.ac.uk
Summary of Findings
Acknowledgements
We would like to convey our sincerest thanks to the parents recruited through Daslne who took part in our research. Their participation has helped us to gain a better understanding of what anxiety is like in children with Autism Spectrum Disorders (ASD) and how it can be measured accurately.
Background
Anxiety is common in children with ASD, but it is difficult to get a clear picture of how common it is and which types of anxiety are more common than others (e.g. social phobia, OCD etc.). One reason for this is that anxiety can be difficult to measure in children with ASD because some of the symptoms of anxiety overlap with some of the features of ASD. For example, repetitive behaviours in ASD can be difficult to tease apart from anxious compulsive behaviours in OCD.
The anxiety questionnaires that are being used with children with ASD were designed to be used with typically developing children, so they do not take account of the specific challenges of measuring anxiety in children with ASD. One of the most commonly used mainstream anxiety measures is the Spence Children’s Anxiety Scale (SCAS) though little is understood about how well it measures anxiety in children with ASD.
What we aimed to do
The overall aim of this research was to consider whether a mainstream measure of anxiety can be used with children with ASD. To meet this aim, we explored what features of anxiety are being measured by the questionnaire items on the SCAS. We sought to understand how these anxiety features are different from those being measured in typically developing children, and whether these features are more like anxiety or more like characteristics of ASD.
What we did
Twelve parents of children with a diagnosis of ASD and seven parents of typically developing children with anxiety problems took part in the study. These parents completed the SCAS and were then interviewed about their responses on this questionnaire. Specifically, parents were asked to give examples of times when their child has been anxious, and then describe what their child’s anxiety was like in that situation (e.g. what they did; what thoughts went through their mind; what happened in their body).
What we found
We found that some questions on the SCAS were capturing features of ASD rather than symptoms of anxiety. For example, a SCAS questionnaire item designed to measure obsessional thoughts in OCD (My child gets bothered by bad or silly thoughts or pictures in his/her head), was found to measure recurrent and pleasurable thoughts about the child’s area of special interest (e.g. thoughts about trains or computer games) in children with ASD. We also found that some questions on the SCAS were capturing symptoms of anxiety closely tied to the features of ASD. For example, a SCAS questionnaire item designed to measure symptoms of panic disorder with agoraphobia (My child is afraid of being in crowded places) was found to measure anxiety associated with their heightened sensory sensitivity (an associated feature of ASD) in crowded/noisy places. In typically developing anxious children, by contrast, this questionnaire item was found to measure anxiety associated with being able to escape in the event of a panic attack (a recognised symptom of panic disorder with agoraphobia).
On the basis of these findings, we have made some recommendations for adaptations to the SCAS (and questionnaires like it) to make it a more accurate measure of anxiety in children with ASD.
For further information about the study, contact Dr Jacqui Rodgers (jacqui.rodgers@ncl.ac.uk) or Professor Helen McConachie (helen.mcconachie@ncl.ac.uk).
Why is this research being done?
The aim of this project is to see whether some pre-existing quality of life (QoL) questionnaires are suitable for use with children who have autism spectrum disorder (ASD). The questionnaires we have chosen to look at are the PedsQL and the KIDSCREEN which both have child and parent versions. We would like to see how big a difference there is, if any, between how children with ASD rate QoL using these questionnaires compared with how their parents rate it. We would also like to know what children with ASD think is important for a good QoL compared with children who do not have ASD. Making sure we have the right tools will help us to improve our research in the future.
What will the researchers be doing?
Children and parents who agree to take part will fill in the questionnaires. We would also like participants to make a note of any questions that are difficult to understand or seem out of place, and write down any topics they think should have been included in the questionnaires.
There is an option for children to talk to a researcher about what they thought of the questionnaires in more detail, and to talk about what sort of things interest them and the types of thing that make them happy.
Based on these interviews we will create an anonymised list of what is considered important for a good QoL and ask children who do not have ASD to rate how important these things are to them and how important these things are to the child with ASD. Although the child completing the ratings will know the child with ASD has helped us with some research, their diagnosis of ASD will not be disclosed.
How is Daslne involved?
Daslne has agreed to help invite families to take part in our study by sending out packs of information sheets, consent forms and questionnaires to families with a child between 9 and 13 years old. There is an option on these consent forms for parents to recommend a similarly aged friend or relative of their child who does not have ASD to help us with the ratings.
Who is funding the research?
This research is being funded by Northumberland, Tyne and Wear NHS Trust.
If you would like more information, or have any questions about this study, please contact us using the details below.
Evelyn Barron evelyn.barron@ncl.ac.uk 0191 282 1382
Prof Helen McConachie h.r.mcconachie@ncl.ac.uk
Dr Jacqui Rodgers Jacqui.rodgers@ncl.ac.uk
TRANSITION – Looking at the Life and Health of young people aged 14-21 years old as they move from children’s health services to adult health services
Why is the research being done?
When young people are 14-18 years old, health services are provided by children’s services and they are often more suited to younger children. From 18-21, the services are provided by adult services and they are often more suited to older people. There is quite a lot of evidence that this may cause young people to drop out of services or get poorly co-ordinated services. They are sometimes looked after by doctors, nurses and therapists who are not very familiar with their condition.
This is a small development project in order to prepare for a larger National Institute of Health Research (NIHR) grant in which we will be testing out different approaches to making this transition easier for young people with complex health needs. In the development grant we are focussing on three groups of young people, those with physical disabilities, chronic illness and autism spectrum disorders.
We are trying out some questionnaires with young people aged 14-21 and their parents. We would like to find out what we should measure in order to decide what service ‘improvement’ and a good outcome for transition would mean.
What will the researchers be doing?
1) A questionnaire pack for the young person and their parents/carers will be sent to their home address. The young person’s questionnaires will take 30-45 minutes to complete and the parent questionnaires will take 10-15 minutes.
There will also be an option to complete these questionnaires securely online.
When we get the completed questionnaires back we will examine which questions should be explored further in an interview with the young people.
2) One of the researchers will then visit some of the families and conduct an interview to discuss the questions and find out what aspects were confusing or did not apply, and whether they can be improved.
3) We are also interested in the health services used by young people so we will be asking to look at health records. This is to try and find out how many services they are using and how often.
Families and young people can choose whether to take part in steps 2 and 3 once they have completed step 1. They are welcome to complete the questionnaires without taking part in the other areas of the research.
How is Daslne involved?
Daslne has agreed to help with recruitment to the study. They will send out information and questionnaire packs to young people with autism spectrum disorder, aged between 14 to 21 years, and their parents.
Who is funding the research?
The study is funded by the research arm of the NHS, called the National Institute for Health Research. The Project Number is PDG-RP-DG-1108-10015
Contact details for the researchers?
Rose Watson and Caroline Joyce are the researchers at Newcastle University. Their address is Institute of Health and Society, Newcastle University, Sir James Spence Building, Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP
Tel: 0191 282 5963
Email: r.m.watson@ncl.ac.uk or c.e.joyce@ncl.ac.uk
Allan Colver and Helen McConachie, also at the Sir James Spence Building, are the Professors at Newcastle University responsible for the research. They can also be contacted at the above number.
Why is this research being done?
We know already that people tend to look away from others when they are thinking hard about something. The purpose of this research is to learn about the degree to which children with Autism Spectrum Disorder (ASD) look away from faces while solving problems. The study promises to help us understand whether certain behaviours (such as avoiding looking at the eye region of faces) that have been seen as entirely dysfunctional may actually be beneficial in some ways.
What will the researchers be doing?
For parents, the study will involve:
• Completion of a questionnaire.
• Participation in part of the study. The child will watch a 1-minute clip of a cartoon and then will describe the scene to their parent.
For children, the study will involve:
Brief assessment of language and visual processing.
Watch cartoon clips and describe them to the Research Assistant and to their parent.
Answer some maths questions while wearing an eye tracker (a pair of light goggles) to record eye gaze behavior.
Look at facial expressions (photographs, video clips, and an actual person) while skin conductance responses are measured (2 small sensors are placed on the tips of two fingers, completely painless and not harmful to skin in any way).
How is Daslne involved?
Daslne has agreed to help with recruitment to the study, by sending out information to parents of children aged between 11 years and 18 years. Families can then approach the Research Assistant for more information.
Who is funding the research?
The Economic and Social Research Council funds the research, directed by Professor Gwyneth Doherty-Sneddon, Northumbria University, and Dr Debbie Riby, Newcastle University.
Contact:
Lisa Whittle, Research Assistant, 0796 514 1954, lisa.whittle@stir.ac.uk
Summary of Findings
ESRC Funded
Professor Gwyneth Doherty-Sneddon (Northumbria University), Dr Deborah Riby (Newcastle University), Miss Lisa Whittle (Stirling University)
We would like to thank children registered with Daslne who agreed tp participate in this research study. In this short article we provide a summary of our key findings. We explored various aspects of eye gaze behaviour associated with typical development and with functioning on the autism spectrum throughout this project; therefore we give a brief summary of the findings of each part of the project.
Our previous research had shown that young people functioning on the autism spectrum were able to change their eye gaze in an appropriate way during a question and answering session – for example, looking away from a questioner more when needing to think. This pattern is also seen in young people without autism and is associated with the need to draw information from memory and switch off from the external environment. Interesting, our gaze aversion task showed that individuals with autism only showed atypical gaze (in this case reduced eye contact) when they were listening to a question they were being asked. They did not avert eye contact more than is typically observed when thinking or when speaking. We will be exploring the source of this increased gaze aversion that is isolated to listening time in our future research. Importantly, gaze aversion patterns in typical development and in autism may be associated with the type of interaction (e.g. a social encounter versus question and answer session) and also, as we have found in this study, the familiarity of the person we are interacting with.
In a second task we explored the impact on holding face gaze on cognitive performance (the ability to answer maths questions). This was an interesting study where we tried to quantify the impact of looking at faces on our mental abilities. We found that individuals with and without autism were affected by looking at faces when having to think. Individuals with autism were affected no more or less than typically developing individuals. This study could have implications for the way teachers ask questions of pupils in class, forms of social interventions and future ideas about patterns of eye gaze associated with autism. We hope to be able to extend and follow up this work in future endeavours.
Finally, individuals registered with Daslne may have helped with our eye gaze and physiological arousal study, exploring the effect of looking at faces on physiological reactivity (e.g. galvanic skin response). Individuals with and without autism increased their physiological arousal when looking at faces in person and on a video screen. Interestingly, individuals functioning on the autism spectrum, but not those without autism, showed a comparable increase in arousal for video-mediated and live faces. Typically developing individuals showed higher physiological reactivity to live than video-mediated faces. As with our other lines of investigation, this study will be taken forward in our future endeavours.
If you would like more information on this research please email Deborah.riby@ncl.ac.uk and once again we would like to thank members of Daslne for their support with these studies.
Dr. Deborah Riby
Lecturer, School of Psychology, Newcastle University
http://www.ncl.ac.uk/psychology/staff/profile/deborah.riby
Why is this research being done?
It seems that about half of young people with ASD have regular problems with anxiety. This study aims to find out the value of a new approach to treatment for anxiety in young people with Autism Spectrum Disorder. The study will assess whether there is a worthwhile change in young people’s anxiety.
The treatment approach was developed in Australia and involves 6 sessions of Cognitive Behaviour Therapy (CBT), adapted specifically for young people with ASD. It is delivered in a group setting by trained professionals. The sessions cover a range of topics including understanding emotions and how we experience anxiety. Each participant develops a ‘Toolbox’ to manage anxiety, including relaxation techniques, how to change anxious thoughts and how to use distraction.
Parents attend a parent group held at the same time, to allow strategies learned by young people in treatment sessions to be practised to home with the support of their parents.
Participants
Young people aged 9 to 13 years who have a diagnosis of ASD, who often experience anxiety, and who are able to talk in a group. They and their parent(s) will be invited to take part.
What will the researchers be doing?
Young people who agree to participate will be asked to complete some puzzles and games, and answer some questions. Parents will be interviewed and complete some questionnaires.
At first, only half of the people in the study will attend the weekly group sessions. This is so that the study can find out whether or not the group is helpful. These people are chosen at random, just like drawing a name out of a hat. For the families who are not chosen at first, we will arrange group sessions after about 6 months. The groups will take place on a weekday late afternoon in central Newcastle with travel expenses paid (other locations may be considered later). The groups will begin in January 2010.
Recruitment of young people and parents started in September 2009, and will continue until April 2010.
How is Daslne involved?
Daslne has agreed to help with advertising the study, which is led by Helen McConachie, Professor of Child Clinical Psychology. Parents of young people aged 9-13 yrs who are interested in taking part are asked to approach a health professional who knows you, such as a member of the Child and Adolescent Mental Health Services (CAMHS) or your community paediatrician for more information. (If you are not sure who you can contact, you can email the study team at BAT@ncl.ac.uk)
Who is funding the research?
The research is funded by the Research for Patient Benefit Programme to Northumberland, Tyne and Wear NHS Trust and Newcastle University
Why is this research being carried out?
The aim of this project is to find out about parents’ opinions and experiences of autism research and attitudes to the use of the gluten and casein free diet. We are also asking child health professionals, who provide services to children with Autism Spectrum Disorder (ASD), to complete a similar survey.
The research is being carried out in Newcastle, Edinburgh and London. The results of these surveys for parents and professionals will help us plan the design of UK research studies into biomedical therapies for children with ASD.
What will the research involve?
Parents will be asked to complete a questionnaire about their thoughts on autism research and any interventions they may have tried, including complementary and alternative therapies. We would like parents to take part even if they have not used the gluten and casein free diet. We will also ask some extra questions about participants’ family (e.g. where in the UK they live); this information will help compare findings from families across the UK.
How is Daslne involved?
Daslne has agreed to help with recruitment to the study, by sending out information to parents of children aged up to 11 years with autism spectrum disorder, inviting them to complete the survey. Parents can then complete the survey online, or they will be offered paper versions of the survey if they cannot access the online version.
Who is funding the research?
The research is being funded by Autism Speaks; an international charity and the only UK charity raising funds for biomedical autism research.
Should you have any further questions about this study, please contact one of us on the numbers below.
Jenna Charlton (0191 282 1379) or Professor Ann Le Couteur (0191 282 1398)
Summary of Findings (opens in word document)
PADIA_Poster_ver10 (pdf)
PADIA – Update
‘PADIA: Parents and Professionals Attitudes towards Dietary Interventions in ASD’
This study, funded by Autism Speaks (US), has been running since November 2008.
The first stage for the study was designing 2 surveys (Parent version and Professional version) so that we could investigate the attitudes and beliefs of parents and professionals to research in autism. We are particularly interested in attitudes and experiences towards the use of biomedical interventions for children with autism/ASD and especially the use of the gluten free casein free diet in Autism and ASD.
We gained ethical approval to run the study in March 2009 . The PADIA questionnaires have now been live on-line for 5 months. We have received a large number of responses from both parents and professionals. Results from the surveys will help inform the design of a future trial of the gluten-free casein-free diet in ASD.
The current total number of completed responses from across the UK: parents 248, and professionals 247. This means that we have very nearly achieved our targets for recruitment.
Many parents from Daslne have supported this study and taken part in completing the parent survey.
82 Daslne parents of children up to 11 years have expressed an interest in taking part in the PADIA survey.
51 have completed the survey; 25 on-line and 26 via a postal copy.
In fact Daslne has been a leading source of recruitment to PADIA.
The autism research team would like to thank all those who have taken part so far.
Recruitment to PADIA is still ongoing and we hope to collect more responses from both parents and professionals over the next approximately 2 months. Recruitment will close towards the end of the year.
The survey can be accessed on-line by visiting www.ncl.ac.uk/cargo-ne/PADIA.html
Alternatively, a postal copy may be requested by contacting the research team on 0191 2821379, or by email; padia@ncl.ac.uk.
Jenna Charlton, Research Assistant
Ann Le Couteur, Professor of Child and Adolescent Psychiatry
6th October 2009
The Parent Partnership Service,
The Dene Centre,
Castle Farm Road,
Newcastle upon Tyne,
NE3 1PH.
Telephone: 0191 284 0480
The Parent Partnership Service in conjunction with the Daslne database and clinicians from Northumberland, Tyne and Wear NHS Trust, wanted to understand more about what is helpful to parents whose son or daughter has a diagnosis of Autism or Autism Spectrum Disorder (ASD). We were particularly interested in what kind of support was received after diagnosis and what support parents considered ideal.
What Did We Do?
In April 2009, we sent out a questionnaire to families in Newcastle registered on the Daslne database who had children aged between 6 and 15 years with a diagnosis of Autism or ASD. We asked about perceived needs for different types of support, e.g. dealing with night-time disturbance, as well as open questions about ideal support.
Who Responded?
30% of questionnaires received were from parents of children at Special Schools including Thomas Bewick and Hadrian. They ranged in age from 6-14 with an average diagnosis age of 4 and current age of 10. The primary diagnosis of these children was autism and learning difficulties. Social Services, School, Community Team for Learning Disability, Speech and Language Therapy, Clinical Psychology and Cheviot View, a respite facility, were among the professions and services most commonly accessed.
The remaining 70% of questionnaires came from parents whose children attended various mainstream primary and secondary schools. Again average age of children was 10 but diagnosis age was a little later on average at 6 years. Children were predominately diagnosed with Autism Spectrum Disorder and nearly 40% had additional diagnoses of either ADHD or dyspraxia. Most commonly seen professionals and services differed from the parents with children at special schools, being Paediatrician, Educational Psychology, Occupational Therapy, School, Child and Adolescent Mental Health Services, Special Needs Network and National Autistic Society. We were pleased to find a wide range of health, local authority, charitable and private sector organisations were mentioned. However there seemed very little consistency between services that people with children with similar needs were accessing. A lot of parents mentioned finding out about services through their own research post-diagnosis instead of being guided to appropriate support.
What Was Needed?
There was a great deal of overlap with both sets of parents about what they felt they needed more help with. Help with their child’s behaviour and developing social and communication skills and positive new skills were very important to both groups. The need for accessible leisure activities with other children with ASD or similar difficulties, such as swimming, sporting activities, drama, arts and crafts and social skills groups, was highlighted as a key need, again across both groups. Additionally, easier access to respite and short breaks and information about and help organising holiday and weekend activities was very important to parents of children at different places on the spectrum.
Sibling support, help explaining ASD to others and parent support, both in a group and on an individual basis, were also raised as needs. One specific idea was suggested, that of a ‘special needs’ clinic, open a few hours a week that parents could drop into for advice on a host of issues from diet to behaviour management.
For children at mainstream school there was a common theme of more specialised help needed earlier in primary school. Parents felt issues like social skills could benefit from early intervention, and teachers needed more support to understand ASD. One to one speech therapy was desired by several parents, as were classes and workshops and more information about available services. They also identified better joint working amongst professionals as being important, to reduce the chances of conflicting or duplicated advice. Several parents felt they would benefit from more practical support at home with their child’s behaviour and anger management.
Positively, both sets of parents felt they had ample opportunity to discuss their child’s progress regularly and they didn’t feel the need for help with night-time disturbance. Equally, they didn’t feel they needed help with marital difficulties or in coming to terms with their child’s diagnosis.
Ways Forward?
It would appear that there is a wide variety of services and professionals for children with ASD to access. What was very clear was that those with similar needs weren’t accessing the same support. A lot of parents mentioned having to track down services themselves and fight for referrals. The need for appropriate leisure, weekend and holiday activities was also paramount. An ideal outcome of this survey would be that all parents upon diagnosis are made aware of what is available in the City and what they are entitled to access. Additionally, provision of leisure activities should be explored with a view to opening up after-school, weekend and holiday opportunities.
Kate Reilly, Judith Lane, Jamie Dibdin, Clare Dover.
Anxiety Survey – Professor Helen McConachie
Why is this research being done?
The little published research to date suggests at least half of children with ASD may experience degrees of anxiety that interfere with everyday life including unusual fears, specific phobias, social anxiety and general worries, for example, about new situations.
This research will:
What will the researchers be doing?
Timetable
How is Daslne involved?
Daslne will send a questionnaire about children’s anxiety to parents of around 400 children. These are families from the Daslne database who have agreed to be informed about research studies. The children and young people are aged 9 years or over. Though children younger than this experience anxiety, as is evident in their behaviour, the questionnaire is only likely to be valid with children from a minimum age of 8 to 9 years.
Parents will be asked a few additional questions, including whether they think their child needs any help with anxiety problems, and whether the child has had professional help with anxiety in the past 12 months, and if so from whom. They will also complete the 10 item problem behaviours checklist from the Daslne parent questionnaire.
Where parents agree, a further questionnaire will be sent to be completed by the child him/herself.
Who is funding the research?
Newcastle Lord Mayor’s Centenary Fund, and Northumberland Tyne & Wear NHS Trust
Contact details:
Professor Helen McConachie, Professor of Clinical Child Psychology, Development and Disability, Institute of Health and Society, Newcastle University
Tel: 0191 282 1396 – h.r.mcconachie@ncl.ac.uk
Summary of results
Survey of Anxiety in young people with ASD
Background
Published research to date suggests at least half of children with ASD may experience degrees of anxiety that interfere with everyday life including unusual fears, specific phobias, social anxiety and general worries, e.g. about new situations.
What we aimed to do
Raise awareness of the high levels of anxiety in you people with ASD
Estimate the level of unmet need for advice from mental health services and others
Understand more about the specific types of anxiety experienced by young people with ASD, in the context of a range of other difficulties
Examine levels of agreement in reporting anxiety between young people with ASD and their parents.
What we did
Through Daslne, the database of children with ASD living in the North East, we approached 419 families of young people aged 9 years or older. Parents were asked to complete a questionnaire about their child’s anxiety, and some questions about unmet needs. Where the parent thought it suitable, they also agreed to give a similar questionnaire about anxiety to their child to complete.
What we found
Over half of the families took part, 211 parents and 76 children. The children were on average 11 years 9 months. There was no difference between responders and non-responders in age, autism diagnosis or gender, but parents were more likely to return the questionnaire when their child had fluent language and where they had indicated on joining Daslne that their child had problems with anxiety.
On average, both parents and children reported high levels of anxiety, comparable to the level for children with anxiety disorder who do not have ASD. The parents and children generally agreed in the level of anxiety reported (r = 0.6). The young people had high levels of obsessive/compulsive anxiety, and panic/agoraphobia in comparison to children with anxiety disorder who do not have ASD. They also unsurprisingly had high levels of social phobia, often finding aspects of school life difficult (e.g. that he will make a fool of himself in front of people).
We asked parents whether they considered their child needed professional help with anxiety. Of the 82 who did, 56% of the children had had professional help in the past 12 months. However, this leaves 44% who had not.
Thus there is a need for awareness of anxiety in young people with ASD, so it is not overlooked and seen simply as ‘part of ASD’. There is a need for access to strategies that will help, including therapy approaches adapted to the particular ways of thinking of young people with ASD, and more mental health support at school.
Acknowledgements
We would like to thank all the parents and young people who responded to the survey. We are very grateful for their time and effort which has helped increase our understanding about how anxiety may affect children with ASD. We are also grateful to the Newcastle Lord Mayor’s Centenary Fund, and Northumberland Tyne & Wear NHS Trust who funded the survey.
Why is this research being done?
The purpose of this research is to explore whether there is a relationship between the way in which young people with Autism Spectrum Disorder (ASD) see the world, how they feel and the level of repetitive behaviours they display.
Repetitive behaviours are one of the most unusual and observable aspects of ASD in many individuals and therefore are likely to inform early identification. Repetitive behaviours can pose a significant challenge to parents and carers and can often interfere with social functioning and learning.
Increased understanding of the reasons for repetitive behaviours would help in the development of appropriate teaching and support services for children with ASD and will impact on the advice given to caregivers and education services in terms of developing appropriate strategies and support for individuals with ASD.
What will the researchers be doing?
Young people who agree to participate will be asked to complete three tasks which look at the way they process visual information. They will also be asked to complete a questionnaire which looks at their levels of anxiety. Their parents will complete three questionnaires to provide information about the young person’s repetitive behaviours and one questionnaire about the young person’s levels of anxiety.
How is Daslne involved?
Daslne has agreed to help with recruitment to the study, by sending out information to parents of young people aged 8 years to 16 years 11 months. Parents can then approach the researchers for more information.
Who is funding the research?
Northumberland, Tyne & Wear NHS Trust and Newcastle University.
Contact details
Parents and young people who are interested can contact the researchers as follows:
Prof Helen McConachie, 0191 282 1396, h.r.mcconachie@ncl.ac.uk
Dr Jacqui Rodgers, Jacqui.Rogers@ncl.ac.uk
Brenda Connolly, b.m.connolly@ncl.ac.uk
Summary of results
Acknowledgements
We would like to thank all the parents and young people who gave up their valuable time to participate in our research. We are very grateful for their time and effort which has helped increase our understanding about repetitive interests and behaviours in children with Autism Spectrum Disorders (ASD).
Background
It has been suggested that individuals with ASD have a different thinking style compared to people without ASD. Most people have a natural tendency to understand the overall meaning of information, that is, to see the whole picture. As a result we tend to remember the gist of something rather than the exact detail of the message.
On the other hand, it has been suggested that individuals with ASD have a tendency to focus on the details rather than trying to understand the overall picture. As a result they often miss the overall meaning of the message or situation. This type of thinking style (i.e. focusing on the details) has been proposed to explain the presence of repetitive interests and behaviours in ASD.
Individuals with ASD have also been found to have higher levels of anxiety than the general population. It has been suggested that this might be related to the tendency for individuals with ASD to focus on the individual details of a message or situation. One of the reasons children with anxiety disorder (and not ASD) feel anxious is because they have a tendency to focus on the threat-related details of a situation, and often fail to understand the overall risk.
Therefore the tendency of children with ASD to focus on details might be related to their higher levels of anxiety. Additionally, it has been suggested that children with ASD may use their repetitive behaviours as a means of managing their anxiety.
What we aimed to do
We wanted to examine the relationships between:
repetitive behaviours of children with ASD and the ways in which they process information
repetitive behaviours and levels of anxiety in children with ASD
levels of anxiety and the ways in which children with ASD process information
What we did
Thirty-four young people aged between 8 to 16 years old, with a diagnosis of ASD, took part in the study. The young people completed two matching games and a brief measure of their ability. Each young person was also asked to complete a questionnaire which looked at anxiety. In addition, their parents completed four questionnaires about their child’s behaviours in everyday situations.
What we found
The purpose of this research was to explore whether there was a relationship between the way in which young people with ASD see the world, how they feel and the level of repetitive behaviours they display.
We found no clear link between repetitive behaviours and the ways in children with ASD process information. We also found no link between anxiety levels of children with ASD and how they think about information.
However, we did find support for a relationship between repetitive behaviour and anxiety. Specifically, we found that parents who reported their child to exhibit higher levels of repetitive behaviours also reported their child as experiencing higher levels of anxiety, and this was confirmed by the young people themselves.
The next step will be to find out more about the link between anxiety and repetitive behaviours. For example, are the repetitive behaviours helpful or unhelpful in managing anxiety?
Brenda Connolly and Helen McConachie, July 2009
Miss I Manola and Dr C O’Hanlon
Why is this research being done?
Word learning can be very problematic among children with autism spectrum disorders (ASD), whereas typically developing children learn the meaning of words relatively fast. It is possible that children with ASD find it hard to learn vocabulary because their Theory of Mind (ToM) skills are weak early on during development, and need to be boosted. Theory of Mind skills enable a child to figure out what a speaker is intending to mean, or refer to, within a social context in which new words are introduced.
In this study we are looking at the relationship between word learning and ToM, in both children with ASD, and typically developing children, to see whether promoting vocabulary acquisition can also promote the development of ToM skills.
This may lead to identifying teaching methods that enhance the development of ToM, which in turn would greatly improve children with ASD’s social interactions and overcome, at least in part, some characteristic deficits typical of ASD.
What will the researchers be doing?
We will be teaching new words within playful contexts. The words will be either colour words, or names for objects. This will enable us to see whether autistic children’s sensitivity to colour may be used to promote their word learning.
How is Daslne involved?
Daslne is assisting us with recruitment to the study, by sending out information packs to parents of children with autism spectrum disorder aged up to 10 years. The parents and the researchers then have direct contact and parents can have any question answered directly by those running the study.
Who is funding the research?
This research part of a 3-year PhD programme, sponsored by the Institute of Neuroscience, Newcastle University.
Summary of Results
We would like to thank all the parents and children who participated in our research. We are very grateful for their time and effort, which has helped us understand more about word learning and Theory of Mind in Autism Spectrum Disorders (ASD).
Background to what we did
Theory of Mind is the ability to attribute mental states to others, such as those of “desire”, “belief” and “intention”. Children with ASD are known to be poor at working out what other people are thinking or feeling. Recent research shows that how children learn new words may be related to whether they have “Theory of Mind”, suggesting that improving development in one area will also improve development in the other.
Furthermore, some recent studies also suggest that children with ASD may process colour differently from how typically developing children do. That is to say, an “over-selectivity” for colour may exist in ASD. Our study looked at whether we can use this to motivate children with autism to perform on word learning “games” as well as games that elicit “theory of mind” reasoning.
What we aimed to do
The main aim of our study was to look at whether language and Theory of Mind might influence one another.
We also aimed to see whether children with ASD would perform better on a Theory of Mind task when colours rather than objects are involved. This would mean that we can motivate children with autism to develop theory of mind skills by focusing their attention on colour within learning contexts.
How we did it
Twenty-three children with ASD, aged between 4 and 10 years, and twenty-two typically developing children aged 2 to 5 years, participated in our study. All children completed an assessment of understanding of words using the British Picture Vocabulary Scale (BPVS), and all played two Theory of Mind-type games, one of which focused the child’s attention on the colour of the objects used within the game, the other of which focused attention on the objects themselves.
We then analysed performance on the colour and object games to see whether children with ASD would perform better on the colour games.
What we found
We found that children with autism were much more successful when their attention was focused on colour during the Theory of Mind game, and particularly when they were taught the names of the colours used. The typically developing children, instead, performed much better when their attention was focused on the objects used within the games.
Where are we going from here?
We are hoping to conduct further research aimed at developing new word learning and theory of mind games that will promote learning in these two areas of development in children on the Autism Spectrum.
If you have any questions about the study, please do not hesitate to contact Miss Irini Manola (0191 222 5938, irini.manola@ncl.ac.uk) or Dr Catherine O’Hanlon (0191 222 6253, catherine.ohanlon@ncl.ac.uk)
Why is this research being done?
Repetitive behaviours are one of the three main areas of difficulty for individuals with autism spectrum disorder (ASD). They may present a significant challenge to families and carers of children with ASD and can get in the way of easy social functioning and learning.
Increased understanding of the reasons for repetitive behaviours would help the development of appropriate and effective interventions, and enable families to understand, cope with and manage their children’s behaviours better.
The purpose of this research is to explore whether there is a link between the way young people with autism spectrum disorder (ASD) make sense of the things they see and hear and the level of repetitive behaviours they display.
What will the researchers be doing?
Young people who agree to participate will be asked to complete three tasks which look at the way they process information which they see and read. Their parents will be asked to complete three questionnaires to provide information about the young person’s repetitive behaviours.
How is Daslne involved?
Daslne has agreed to help with recruitment to the study, by sending out information to parents of young people aged 10 years to 16 years 11 months. Parents can then approach the researchers for more information.
Who is funding the research?
Northumberland, Tyne & Wear NHS Trust and Newcastle University.
Contact details
Parents who are interested can contact the researchers as follows:
Prof Helen McConachie
0191 202 3087
h.r.mcconachie@ncl.ac.uk
Caoimhe Patton
c.a.patton@newcastle.ac.uk
Summary of Research Findings (September 2008)
We would like to thank all the parents and young people who participated in our research. We are very grateful for their time and effort which has helped increase our understanding about repetitive interests and behaviours in children with Autism Spectrum Disorders (ASD).
Background to what we did
Uta Frith (1989) has suggested that some of the features of Autism Spectrum Disorder (ASD) might be explained by the way the individuals with ASD process information.
The theory argues that most people naturally try to understand the overall meaning of information, that is, to see the whole picture. This is often done at the expense of attention to detail. As a result we tend to remember the gist of a message rather than the exact message. Frith suggests that individuals with ASD have a tendency to focus on individual details rather than trying to understand the overall picture. They would have good memory for detail, but might miss the overall meaning of a message or of a situation.
Frith’s theory helps explain some of the strengths and weaknesses often observed in people with ASD, such as excellent skills in visuo-spatial tasks such as jigsaws and in memory tasks such as learning lists. The theory has also been proposed to explain the patterns of repetitive behaviour demonstrated by individuals with ASD. For example, it might be that someone who is very aware of detail does not like any change in their environment.
What we aimed to do
This project aimed to use experimental tasks to see if the repetitive behaviours of individuals with ASD might be related to the ways in which they process information.
We also aimed to see whether processing style might be the same across different types of information processing i.e. visual and verbal information.
How we did it
Thirty-six young people aged from 10 to 16 years, with a diagnosis of high-functioning autism or Asperger syndrome, took part in the study. They did a shape search task to test how they processed visual information and a reading task to assess how they processed verbal information. They also did four tasks to estimate their cognitive ability.
Their parents completed three questionnaires to confirm the young people met the criteria for the study and to report on the type, frequency and severity of the young person’s repetitive behaviour.
This information was then combined and analysed to look for a possible relationship between the young people’s information processing style and their level of repetitive behaviours.
What we found out
We found no link between visual and verbal processing style. This may suggest that processing of information may be different for different types of information i.e. verbal and visual information. However, future studies would need to test out this finding with a range of different measures, and also observe how children act in real situations.
We did find some support for a link between verbal processing style and repetitive behaviours, such as rituals and special interests. However, we did not find a relationship between repetitive behaviours and how children did the shape search task, i.e. whether they looked at the detail or at the whole picture.
We also think that limitations in the measures we used may have covered up links between thinking style and repetitive behaviour. Looking closer at patterns in the results, we found that around half of the young people with ASD clearly showed a link between the way they processed either visual or verbal information and their level of repetitive behaviours.
If you have any questions about the study, please contact Professor Helen McConachie 0191 202 3087.
Why is this research being done?
The Gluten-Free Casein-Free Test Food Development study is part of the preparation of a large scale randomised trial into the effectiveness of a Gluten-Free / Casein-Free (GF/CF) diet in young children with autism. The experiences of participants will be vital in discovering how to run the future diet study.
The main aim of the current study is to try out a range of high quality “test food” products, developed in collaboration with Heron Quality Foods, in a variety of formulations that children with autism, aged 3 to 5 years old, would be happy to eat. They include biscuits, pancake mix and krispie bars.
What will the researchers be doing?
A month’s supply of the “Test Foods” will be delivered to families taking part in the study. The young children will be offered two of the Test Foods every day for a month. During this time parents are asked to keep weekly food diaries and complete questionnaires about their child’s preferred foods. Some of the formulations of these “test foods” will be truly GF/CF while some will contain the normal daily amounts of gluten and/or casein that young children eat.
How is Daslne involved?
Daslne has agreed to help with recruitment to the study, by sending out information to parents of young children with autism spectrum disorder, aged between 3 to 5 years. Parents can then approach the researchers for more information.
Who is funding the research?
Funding for the study was given by The Children’s Foundation and Research Autism.
Contact details
Parents who are interested can contact the researchers as follows:-
Prof A. S. Le Couteur
0191 202 3095
A.S.Le-Couteur@ncl.ac.uk
Sue Leach, Research Nurse
0191 202 3036
S.J.Leach@ncl.ac.uk
Summary of findings for parents and professionals – October 2008
There have been many anecdotal reports that following a gluten free and casein free (GFCF) diet can improve symptoms in children with autism. Gluten is a protein found in wheat, barley and rye. Casein is a protein found in milk and other dairy products e.g. yoghurt, cheese and ice-cream. Many parents try the GFCF diet even though there is currently very little firm research evidence about the benefits or otherwise of this diet.
As preparation for a large scale multi-site randomised controlled trial (RCT), a range of Test Foods were developed in partnership with Heron Quality Foods. An RCT is a study in which children are allocated by chance (like tossing a coin, or throwing a dice), rather than by choice, to having gluten, casein, neither or both taken out of their diet. They are then followed up to see the effect on their behaviour. The TestFoods used in this study have been developed as GFCF foods which then have gluten, casein, both, or neither added back in.
Four groups of Test Foods were created, the food groups were as follows:
GFCF Test Food with added gluten
GFCF Test Food with added casein
GFCF Test Food
GFCF Test Food with added gluten and added casein
Six food items were developed; lemon cookies, almond cookies, chocolate muffins, chocolate crispie bars, porridge, and batter mix. Once the Test Foods had been produced we then needed to see if young children with autism would eat the foods everyday.
We must emphasise that this study was just about the acceptability of the Test Foods. It was not about whether autism and other associated symptoms would be better with a change of diet.
What we aimed to do
Food:
- To develop high quality Test Foods which parents can prepare for their child.
- To see if young children with autism would eat these Test Foods everyday.
Procedure:
- To assess the reliability of using a courier service to deliver the Test Foods.
- To see how practical it is for parents to:
record the Test Food their child ate, and how much of it they ate.
complete self-report questionnaires about their child’s food preferences, eating behaviour, and symptoms of autism.
What we did
52 children with autism or ASD were recruited to the study; 18 from Newcastle, 18 from London and 16 from Edinburgh. All children were between the ages of 3 years and 5 years 11 months.
The aims of the study were explained to parents and questionnaires were given for completion and return. This included the wellbeing booklet which focused on the child’s behaviour, their gut symptoms and any problem behaviours. Food packs were then delivered to the home by courier and parents were asked to complete a questionnaire about their first impressions of the Test Foods and their child’s food preferences. Cooking instructions were given for the Test Foods which needed some preparation.
Over the next 28 days children continued their usual diet and parents were asked to offer their child two of the Test Foods a day. They used the “food diary” to record the choice of Test Food and the amount their child ate. Neither the parents nor the researchers knew which Test Food group the child had been assigned to.
Children remained on their usual diet throughout the study period.
At the end of the month parents filled in a second wellbeing booklet and a questionnaire about their child’s eating behaviours. In addition, some parents were interviewed over the phone by a paediatric dietitian.
The key findings
Questionnaire findings
Children’s usual food preferences:
The children’s top four favourite foods as reported by parents were:
1. Fruit and vegetables
2. Meat and fish
3. Biscuits, cake and chocolate
4. Pasta
Most of the children with autism and ASD will try new foods (63%).
The majority of children preferred sweet and salty flavours to sour and spicy. Over 80% of the children were not fussy about eating food of a certain shape, colour or brand. Almost 70% of the children preferred to eat with their fingers. Only a few children insisted that their food must be cooked in a specific way or by a specific person.
It is interesting to note that children with autism seemed to show a greater preference for salty foods than children with ASD and they were also more likely to be particular about the texture of the food. Children with autism were more likely to be distressed when foods touched on the plate.
Test food diary and children’s eating behaviours
Nearly all of the children tried the Test Foods (49 out of 52); only three children didn’t eat any. A further four families finished the study early as the children were refusing to eat the Test Foods.
Three quarters of parents reported that they liked the appearance of the pre-prepared Test Foods (cookies and crispie bars). Nearly all families with the necessary cooking equipment tried making the muffins, porridge and pancakes / Yorkshire puddings.
The children’s favourite Test Foods were the muffins and the chocolate crispie bar. The porridge was the least popular although some children really enjoyed it. Even though there were no statistically significant differences between the groups, there was a trend that children in group A (Test Foods with added gluten) seemed to eat more of the Test Foods than children in the other groups. Children in group B (Test Foods with added casein) seemed to eat the least amount of the Test Foods. Some of these differences may be linked to the texture of the Test Foods (for example adding casein may have made some of the foods seem ‘chalky’) and we will bear this in mind when deciding which Test Foods to include in future studies.
Wellbeing booklet
General wellbeing:
Most children were reported as being generally happy (92%). 88% of parents reported that their child was fun or ’sparky’. 39% of parents described their child as affectionate. Almost three quarters of children have a short attention span. Just over a quarter of children (27%) never used pointing to share interest.
Gut and toileting symptoms
Having restricted eating habits and being faddy/picky was the most frequently occurring problem (45% of children). 29% had a poor appetite at mealtimes. 31% of children wore nappies during the day and 53% wore nappies at night. Only 14% of the children regularly suffered from diarrhoea or constipation. 27% of children would occasionally eat non-food items and this was a severe problem for a further 18%.
Problem behaviours
Parents reported that 43% of children had serious temper tantrums when they didn’t get their own way. Other common problems were inappropriate yelling, quick changes of mood, and needing demands to be met instantly (39 – 41%) but very few children were reported as being unhappy.
Procedure
The delivery of the Test Foods and the questionnaire procedures generally worked very well. There were some problems with the postal system for the return of questionnaires (possibly due to the postal strikes). We hope to include electronic questionnaires in future studies.
For some families there was confusion about the date of delivery but only one package was delivered to the wrong address.
Some families found it difficult to store a month’s supply of Test Foods. 24 families found that some or all of the biscuits were broken on arrival. For future studies, we will review how we transport and package the Test Foods so that they arrive in good condition.
Parent’s comments
We are very grateful to the parents for their useful suggestions for future research.
44% of families would have liked more variety of Test Foods, particularly more savoury foods. Bread and pasta were the most common suggestions for additional Test Foods.
The majority of families didn’t have any problems making the Test Foods. Many families reported that they had fun baking the muffins together.
There were several comments about the ’strange’ consistency of the porridge but one child particularly enjoyed it and has continued to eat it.
Many parents thought the portion sizes were too big in addition to their child’s usual diet. For future studies we plan to incorporate the Test Foods into mealtimes with the help of our study dietitian.
Conclusions
- Test Foods were eaten by the majority of the children and in light of the comments made by parents we will see if we can extend the range of the Test Foods and reduce the portion sizes.
- We have learnt a great deal about the delivery procedures and will make some necessary adjustments. We will also aim to include electronic questionnaires where possible.
Next steps
We are very pleased to announce we have received funding from Autism Speaks (an international autism research charity) to conduct a UK survey of parents’ and professionals’ attitudes to the use of the dietary intervention in autism. This will take place over the next year. It will provide us with information about parents’ and professionals’ willingness to support a large scale RCT and whether the time is right to proceed with an RCT of GFCF diets.
These findings will be useful in designing and carrying out other research into complementary and alternative therapies for children with ASDs.
We would like to thank all parents and professionals who helped us with this study. All these findings will help us plan our future research into the GFCF diet as an intervention for children with autism.
Should you have any further questions about this study, please contact one of us on the numbers below.
Anna Cutress (0191 282 1379) or Professor Ann Le Couteur (0191 282 1398)
See http://www.ncl.ac.uk/cargo-ne/ for information on current research.
(Study funded by the Children’s Foundation and Research Autism)
Sandra Adams, Dr Ashley Adamson, Nicola Burton, Anna Cutress, Heather Gifford,
Sue Leach, Professor Ann Le Couteur and Professor Elaine McColl
Newcastle University
Professor Gillian Baird
Guy’s and St Thomas’ Hospital, London
Professor Anne O’Hare and Natalie Settle
University of Edinburgh
We would like to thank Heron Quality Foods for the time and effort they put in to developing and preparing the foods and co-ordinating their delivery.
Why is this research being done?
Many claims have been made for effective treatments for autism, but there has been very little systematic research evidence. The PACT study tests a treatment that aims to enhance parent-child communication in autism, and the social and language development of the child.
Families attend sessions at a clinic with a speech and language therapist every two weeks for six months to learn additional ways of understanding and communicating with their autistic child, with monthly booster sessions for a further six months.
This treatment is not too intensive (with about 1.5 hours of therapist time and 3.5 hours of parent homework time weekly) and for this reason it would be possible to extend it practically into local health services.
What will the researchers be doing?
The study will randomly allocate 144 children in three representative sites across the UK (Manchester, Newcastle and London) to a group receiving routine clinical care in the community, and another group receiving routine clinical care but with the addition of this communication intervention.
Each child will have detailed assessments before and after a 12 month period. We will also study the cost effectiveness of the treatment.
How is Daslne involved?
Daslne has agreed to help with recruitment to the study, by sending out information to parents of children aged between 2 years and 4 years 11 months. Parents can then approach the researchers for more information.
Who is funding the research?
The research costs are funded by the Medical Research Council and the Department for Education and Skills. The treatment costs are funded by the Department of Health.
Parents who are interested can contact the researchers as follows:
Dr Helen McConachie, 0191 202 3087, h.r.mcconachie@ncl.ac.uk
Professor Ann Le Couteur, 0191 202 3044
Findings
The PACT trial was a great success scientifically. It was bigger than any previous early intervention research study, having recruited by far the largest group of families with a child with autism, and almost all were successfully followed up over the trial period. The research team are very grateful to the families for their involvement and support of this work.
The study assessed 152 preschool children across three UK sites (Greater Manchester, North East England, South London) with roughly half receiving the PACT intervention plus local services and half just local services. The PACT intervention consisted of fortnightly then monthly sessions where speech therapists coached parents, using techniques such as video play-back, in ways of interacting and communicating with their child. Local provision consisted of various general and specialist autism services provided by local health, education and social care services.
Improvement in behaviours characteristic of autism was assessed by using a play-based observational assessment. After one year the severity of the autism behaviours was reduced slightly in both groups, but the difference between the two groups was not clinically significant. However, the PACT intervention did lead to improvements in the timing and responsiveness of parents’ communication with their child, and the amount that children communicated using speech and gestures when playing with their parents. Parents also reported greater improvements in their child’s language abilities.
The main results from the PACT trial were published in The Lancet, one of the world’s leading medical journals.
In reporting to the media we concluded that, on the basis of our findings, we cannot recommend the addition of this PACT intervention to treatment as usual for the purpose of reduction in autism symptoms. The PACT intervention does, however, significantly alter parent-child two-way social communication in ways that are associated with subsequent positive child outcomes in longitudinal studies, and are likely to be positive for parents themselves. Ways to help children to improve their communication skills with other people and in wider contexts need to be developed.
What are the consequences of the trial?
The PACT trial is the biggest evaluation study yet undertaken and the results make an important contribution to the growing evidence around treatments for autism using rigorous trials. A number of other groups around the world are conducting trials into similar and contrasting interventions. The clinical and research communities use the results of these trials to modify and improve the interventions, to maximise those things that work best and to try new techniques for challenging areas. The results we published will be considered by clinical and research teams around the world and will be used to inform their clinical practice and plan new research studies.
It is particularly clear from our study that the intervention can greatly improve parents’ morale and their ability to interact with their children, which in turn improves children’s communication with their parents. We are keen to understand more about the nature of the benefit of this over time.
Contact Us
If you have any questions, or comments that you would like to make please do not hesitate to write to Helen McConachie or Ann Le Couteur. Our contact details are:
Newcastle University
Institute of Health and Society
Sir James Spence Institute, 3rd Floor
Royal Victoria Infirmary
Newcastle upon Tyne NE1 4LP
Email: h.r.mcconachie@ncl.ac.uk or a.s.le-couteur@ncl.ac.uk
Website www.medicine.manchester.ac.uk/pact/
Published paper:
Green, J., Charman, T., McConachie, H., Aldred, C., Slonims, V., Howlin, P., Le Couteur, A., Leadbitter, K., Hudry, K., Byford, S., Barrett, B., Temple, K., Macdonald, W., Pickles, A. and the PACT Consortium (2010) ‘Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial’, The Lancet, 375, 2152-2160.
Why is this research being done?
The range of information available concerning Autism Spectrum Disorder (ASD) for families and professionals is substantial. There is great variability in the type, format and sources of such information. Following on from diagnosis, there appears to be no clear standard, or process for families to follow in terms of what information or advice they may expect to find or receive.
Families are often left to use their initiative to find answers to questions and to decide what advice to follow, such as the right support for their child, or how to navigate the education system.
What will the researchers be doing?
Northgate and Prudhoe NHS Trust (in collaboration with Daslne) are undertaking a research study to investigate experiences of the main carers of children recently diagnosed with ASD. The study will explore what information has been provided, what information the main carers have sought for themselves, and what factors help main carers decide which is most significant and will be of the most use to them.
It is hoped that the research findings will be used as evidence to inform professionals what are the best methods of providing information and guidance to main carers of children with ASD.
How is Daslne involved?
The Daslne team will search the database for families where the child received a diagnosis in the past two years. Daslne will then send out letters about the research in December 2005.
Who is funding the research?
Northgate and Prudhoe NHS Trust will provide research psychologists to interview parents.
Summary of Research Findings
Acknowledgements
We would like to thank all the parents who gave up their valuable time and provided us with a wealth of insightful comments. Thanks also to Daslne for enabling us to contact families.
Why did we carry out the research?
Over the last 20 years the range of information available to parents of children with autistic spectrum disorders appears to have increased considerably, particularly with the greater use of the internet.
We wanted to investigate how well the available information met parents’ needs, and whether there were any difficulties in obtaining, or selecting relevant information. We also wanted to learn from parents what aspects of professional practice (in relation to information giving) were valued and what aspects could be improved.
What was done
Twenty five families were recruited through Daslne. They all had a child diagnosed with an ASD within the last two years. They were interviewed in depth about the following issues:
a) What information was provided:
i) at diagnosis
ii) subsequent to diagnosis?
b) What information-seeking activities have they undertaken?
c) What information sources are important to them?
d) How do parents decide what information is significant?
e) What factors cause parents to discount some information?
f) Do parents share information with other family members or carers?
What were the findings
Here are some of the key findings – a more detailed paper is being prepared for publication.
Before diagnosis
Eighteen parents (72%) did look for information before their child was diagnosed. Several pointed out it that it was difficult to know where to begin when you were not sure what was wrong. The majority of this information searching was carried out independently by parents, although a few received guidance from professionals or friends.
Source of information.NAP
At this stage parents needed to cast their net widely so the internet and books were the major sources of information.
Throughout the study parents named the internet as an important source of information but one where you needed to be wary and selective.
Books, the internet, but the internet could do your head in.
(* all comments in italics are from the parent interviews, but in order to maintain confidentiality are not attributed to specific parents).
Immediately After Diagnosis
Type of information received from professionals.NAP
Some parents were satisfied with the information they received, but others reported a lack of information or said that they would have liked more information from professionals. The majority of parents liked a combination of face to face and written information. A number of parents commented on the importance of written information as something you could refer back to or use as a reminder, and books were seen as particularly useful for this purpose.
The least helpful is not giving you any information at all. It’s nice when they tell you things. Obviously face to face is lovely. But when it’s written down you can read it and you can read it again and you can go back to it if you want to, until it does sink in.
The most (helpful) is talking one to one. Talking to somebody is better than reading. The least helpful is when you get written statements. They mean nothing to me, or books or letters.
Questioning professionals
It was encouraging that a clear majority of parents (21) felt they could question professionals about information relating to ASD and their child.
Definitely. Even now that I’ve moved away from the area I could phone them.
Yes. I felt that if you were going to find out your child had an abnormality, which is never going to be nice, it couldn’t have been handled better. All the questions we had were answered. We were not pressured or bombarded with information, but we were given practical helpful advice.
Several parents emphasised the importance of practical information and also information that was relevant and specific to their child. In some cases, professionals wereseen as important in selecting relevant information or helping to show how information could be applied to an individual child.
I don’t want to know everything there is to know about autism, I want to know everything there is about my son that can help him.
Parents felt frustrated when they couldn’t obtain relevant information. This was more often reported if they had a child with Asperger syndrome or less typical autism. This suggests that professionals need to build up information sources in the less typical areas of autism and ensure that they help to make information as applicable as possible to children with more unusual profiles.
First Two Years from Diagnosis
Nineteen parents (75%) had looked for information since diagnosis. Over 50% said that they constantly or very often sought information. Some saw this as an important part of supporting their child, and felt impelled to do it, even if it was difficult or challenging at times.
You have to be proactive to find information. It’s not going to turn up on your door step, you’ve actually got to find information.
I’ve gathered as much information as I can, now it’s just coping with it. It’s not easy.
I think we’ve always been trying to find things out ourselves. You just have to. I couldn’t bear to be in the dark. You have to think you’re doing the best.
Other parents reported that they coped more effectively by limiting the amount of information they sought.
The information’s there but I don’t feel I need to seek it. The more you get the more it buzzes round in your head. It’s too much to take in. I can cope with the information I have at the minute, but if I have too much I get stressed. I have to take it slowly.
Some people want to study it and know everything about it but I couldn’t cope with too much knowledge. Too much knowledge and you’re frightened about what your son is doing upstairs when he’s own his own.
Several parents stressed the importance of how information giving was paced by professionals and appreciating professionals who gave them information as and when they needed it, so they did not feel overwhelmed.
Chart on Information Sources
As well as information from professionals, parents stressed the importance of the internet, the National Autistic Society, ASD support groups, and ASD training programmes. Some commented on the importance of professionals passing on contact details for local ASD support groups and training.
Two thirds of parents said they encountered no significant difficulties in looking for information but one-third said they did. Some reported that, although they received information at the time of diagnosis, they now had difficulty contacting professionals for further information. Others commented that the amount of information was overwhelming and/or difficult to evaluate if from the web. Forty per cent of parents reported that they had felt overwhelmed by the amount of information on ASD.
I would agree (to feeling overwhelmed) but it’s the condition. It’s like how many things come up about how to lose weight.
Credible sources of information
Given the amount of information available an important question was how parents decided information was credible or worth acting on. Many considered the source the information was coming from was a critical factor in how likely they were to trust it, with professional and official sources generally having higher credibility. Several said that with practical advice they would use common sense or knowledge of their child to weigh up whether something might be worth trying.
If I’ve looked on the NAS website, then I would trust it, or the Early Bird information course. It’s linked to the NAS I think and to the council, so I just assumed it would be credible.
Most credible information sources.nap
Possible implications for Professional Practice and Further Questions
1). The majority of parents wanted information at the time of diagnosis. One suggestion is that a checklist of the information parents of children with ASD should receive (if they so wish) could be attached to individual children’s case notes.
2) Professionals need to be aware there are individual preferences in how families like information conveyed and the amount of information they wish to receive.
3) In some cases professionals had an important role in finding out information or making information relevant to an individual child. This may be especially important for children on the wider autistic spectrum where parents reported more difficulty in obtaining relevant information.
4) Some parents reported not receiving sufficient information immediately after diagnosis or in the two years following on from diagnosis. Where parents had good access to professionals and autism support groups they were more likely to be satisfied with the quality and applicability of information available to them.
5) Many parents gather, organise and evaluate information and have clear ideas on how to judge the credibility of different information sources. Over 50% of parents used a folder or filing system to store information.
For further information contact
Dr Barbara Riddick e-mail Barbara.Riddick@durham.ac.uk
School of Education
University of Durham
Durham
DH1 1TA
Why did we carry out this research?
Northumberland is one of the districts involved in establishing the Daslne database of children with Autism Spectrum Disorder in the North East.
In order to have useful information on numbers of children quickly, the first phase has been a survey to identify as many children as possible who already have a diagnosis of Autism Spectrum Disorder. The families are then approached to request their participation in Daslne.
The Northumberland District Daslne Coordinators have been collating the relevant information to achieve this aim since the launch of Daslne in October 2003, and we have recently managed to complete the case finding of children for the survey phase.
What was done?
Children with a diagnosis of Autism or Autism Spectrum Disorder, including Asperger syndrome, born on or after 01 January 1993, were identified by collating information from multiple agencies between health, allied health and education professionals.
All agencies were asked to provide lists of notifiable children to the District Coordinators, and where possible, the accuracy of the diagnosis was confirmed by checking the information on the Northumberland Special Needs Database, or by contacting relevant professionals who made the diagnosis.
What were the findings?
A total of 343 notifications were received from all agencies. Of these, a total of 185 children with a confirmed diagnosis born after 01 January 1993 were identified.
The calculated prevalence rate in Northumberland, using population figures from Census 2001, was 56.3 per 10,000. This is compares very favourably with the current accepted prevalence of 60 per 10,000.
The estimated completeness of case finding was between 89% (capture-recapture statistical analysis) and 91% (Census 2001 data).
Main message
These results indicate a very satisfactory level of estimated completeness of finding all children with Autism Spectrum Disorder in Northumberland. Procedures have now been developed for approaching families about Daslne, after their child newly receives a diagnosis of Autism Spectrum Disorder.
Dr Raymond Barry
Former Daslne District Coordinator for Northumberland and Consultant Paediatrician
Community Pediatrics Department
Newcastle General Hospital
Westgate Road
Newcastle upon Tyne
NE4 6BE
T: 0191 256 3407
F: 0191 256 3821
E: Raymond.Barry@nuth.nhs.uk