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Completed Research
Sensory Hotspots in Children Magda Glod People with Autism Spectrum Disorder (ASD) often experience unusual responses to everyday sights, sounds, tastes and textures which can sometimes result in discomfort, distress or avoidance of particular objects, food or situations. Although these responses are very common in ASD, they may change overtime. The exact nature of these age related changes is at the moment still unclear. These types of reactions are also present in children with Williams syndrome (WS) – a rare developmental disorder. Up until now children with ASD and those with Williams syndrome have not been directly compared in relation to their sensory responses to see whether there are patterns of responding which are unique to either condition. Knowing this might help us to understand some of the core features of each condition. We are therefore interested in finding out how children with ASD and Williams syndrome react to a range of everyday sensory events and how these responses might change with age. In order to do this we are asking parents of children with either ASD or Williams syndrome or typical development aged between 4 to 16 years to complete some questionnaires. One of the questionnaires asks about their child’s responses to everyday sensory events, one asks about social and communication abilities and the final one asks about the parent’s personal reactions to sensory experiences. It takes about forty minutes to complete all three. Children are not directly involved in the study. Once we have all of our questionnaires, we will be able to compare the sensory responses of the three groups of children to see what is shared and what might be unique to each group. Our broad age range will also enable us to look at whether these responses change with age. Finally, using the information the parents report about their own reactions we will be able to see if these responses to sensory events run in families. We hope this research will benefit the families of children with ASD and WS by providing a wider understanding of how children experience the world, and that this will influence future interventions.
Repeating words and sentences – Why do some children find it hard? Hannah Hobson Some children have problems repeating words and sentences, such as children with developmental disorders such as autism spectrum disorder (ASD) or specific language impairment (“SLI”). This project is looking at whether some children do better if information is presented by a computer, rather than a person, and if children’s ability to copy words is related to their ability to copy movement. It is also looking at whether an ability to repeat words and sentences relates to children’s attention to different kinds of sounds. The project forms part of doctoral research being undertaken by Hannah Hobson, who is interested in the relationship between ASD and SLI, and why these children find repeating words and sentences hard. It is hoped this this project will help researchers to better understand the relationship between these two conditions, and whether SLI and ASD might share certain risk factors. Understanding the similarities and differences between SLI and ASD is important for developing therapies that best suit either disorder. The work we will do involves questionnaire and interviews, and some behavioural testing. Parents of children who take part answer questions on their children’s attention and communication, and also their autism symptoms, by phone and by written questionnaires. Hannah then visits the children, either during school or at home, and does a series of tasks that test the children’s language and intellectual ability. These tasks include a series of non-word repetition games, in which children hear a word they’ve never heard before and repeat it back. They also do motor imitation games, where they watch videos of a model and try to copy what they see him do. ASD-UK is contacting families on behalf of Hannah Hobson, University of Oxford, the principal researcher. Hannah Hobson’s DPhil is funded by the Medical Research Council.
Autism & Technology: gathering parent wisdom on using technology with children with autism in the home Sue Fletcher-Watson 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 ASD-UK involved? ASD-UK 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 [email protected] 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, including autism-specific app reviews, @SueReviews
EAR: Engaging in Autism Research What is the opinion of the autism community across Europe on the study of early signs of autism in infancy? Sue Fletcher Watson Background Significant research in the past decade has focused on the study of the early signs of autism spectrum disorder (ASD) in infants, prior to the earliest reliable diagnostic age of 3 years. Prospective recruitment of enough babies to yield a significant proportion with ASD is very challenging. Thus researchers have turned to recruitment of infants at familial risk of ASD by virtue of having a diagnosed older sibling. Such research carries ethical concerns. For example, infants may be described as ‘at-risk’ for ASD and families are often asked to sign-up to longitudinal designs which last many years and do not incorporate an intervention component. While researchers clearly aim for the highest ethical standards, there is to date no research explicitly addressing the attitudes of the community to this important work. Aim This study will use an online survey disseminated across Europe to explore the attitudes of the autism community to research in this area. Outcomes will include a public report, guidance for researchers and a journal article. Methods 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. The survey will be translated into 7 language and disseminated across Europe to gain wide-ranging perspectives from the autism community. The intended sample size is to reach a minimum of 200 participants per country, in order to increase the likelihood that national perspectives are accurately represented by the sample. Analysis Survey data will be translated at source and a combined English-language database will be analysed for common themes (what do the majority of respondents think) and differences between nations and categories of respondents. Impact and Dissemination Findings will be shared with an academic audience at conferences including the closing conference of the Enhancing the Scientific Study of Early Autism Action and at the annual meeting of the British Autism Study of Infant Siblings. We additionally aim to produce an academic journal article, guidelines for researchers working with infants at increased likelihood of autism, and a report to be circulated to participants in the survey. Funding 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.
ASD+ Study – Co-existing conditions in children with Autism Spectrum Disorder Beena Koshy Why is this research being done? This project aims to explore the additional difficulties that children with ASD often experience; examples include sleep problems, feeding difficulties and hyperactivity problems. A recent study through the Database of children with ASD living in the North East of England (Daslne) showed that more than half of children had four or more additional difficulties that affected them each week. In this new research project we hope to explore the relationships between these additional difficulties in children with ASD, how they affect families, and parents/carers’ experiences of the services that help to improve these difficulties. This is the biggest study in the UK so far about additional difficulties in children with ASD and it is a great opportunity for parents to express themslves 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 range and severity of difficulties and the impact they have on the children and their families. We will use information from ASD–UK to understand the difficulties for each child and use the appropriate questionnaires. In the second stage, we will hold discussions with a small group of parents/carers and their professionals about the services available to meet the needs of children with ASD and their families. How is ASD-UK involved? ASD-UK is helping the research team 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 to Dr Beena Koshy, paediatrician. Contacts Dr. Beena Koshy Newcastle University, Institute of Neuroscience.
One in a Hundred – Putting families at the heart of autism research Simon Wallace, Jeremy Parr and Alison Hardy Autistica conducted a survey in 2012 which included the views of parents and individuals from ASD-UK. The ‘One in a Hundred’ report is the result of the survey with almost 1000 parents and individuals with autism. The survey included a large online questionnaire, telephone interviews and focus groups. This consultation is a first step in an on-going process by Autistica to look at greater engagement with families and improve communication between families, researchers and medical practitioners in order to set research priorities. This is a summary of the findings. The full report can be found here. Information was collected in 4 key areas: 1. Living with Autism 2. Experiences of the UK health system 3. Attitudes to scientific research 4. Research priorities Summary of the main points Living with autism 94% of parents worry about the future of their child with autism Both parents and individuals highlight one of the major negative experiences of living with autism was being marginalised by society 72% reported being judged/misunderstood 62% of parents felt they were isolated from those around them 2/3 of parents felt the experience of autism had given them a perspective on what really matters in life Experiences of the UK health system � of adults reported no specific help in the months after diagnosis 74% of adults would have liked interventions to help reduce worry and stress 61% of adults wanted help with social skills 55% of parents reported not receiving enough information on autism once a diagnosis had been given 80% of parents would have liked to receive an intervention within the first month after diagnosis Attitudes to scientific research 82% of parents and 57% of adults agreed that more medical research would positively affect their lives 34% of parents and 27% of adults in the survey have tried interventions not scientifically proven Research priorities The main research priorities for parents are earlier interventions, the difficulties that go with autism and causes of autism. For adults – earlier diagnosis, improvements in diagnosis and interventions. Autistica is the UK’s largest medical research charity for improving our understanding of the causes of autism, as well as advancing early diagnosis and evidence-based interventions. Autistica is funding ASD-UK.
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Completed Research
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Completed Research
Sensory Hotspots in Children Magda Glod
Repeating words and sentences – Why do some children find it hard? Hannah Hobson
Autism & Technology: gathering parent wisdom on using technology with children with autism in the home Sue Fletcher-Watson
EAR: Engaging in Autism Research What is the opinion of the autism community across Europe on the study of early signs of autism in infancy? Sue Fletcher Watson
ASD+ Study – Co-existing conditions in children with Autism Spectrum Disorder Beena Koshy
One in a Hundred – Putting families at the heart of autism research Simon Wallace, Jeremy Parr and Alison Hardy |