Completed Research

University of Bedfordshire

With help from ASD-UK, academics at the University of Bedfordshire led by Dr Chris Papadopoulos carried out an online listening exercise survey to explore autism stigma. 198 people participated with the large majority stating they had experienced some form of stigma, with a wide range of detailed examples provided. For example, parents described accounts of their child being unfairly excluded by schools and bullied by peers, wider family members refusing to accept or understand the diagnosis, perceiving “stares and being tutted at” by members of the community, and receiving negative comments about their parenting style.

Autistic adults reported similar themes as well as describing the hurtful, stigmatising language in every day conversations such as “everyone is little autistic.” Half of the respondents stated that they tried to cope with stigma by developing thick skins, ignoring the public, or admitted they had no idea how to deal with it. Others stated that consciously recognising that stigma arises from lack of public understanding helped them to cope when encountering negative attitudes towards them.

A wide range of ideas about how we can help tackle autism stigma were described including not hiding a diagnosis, education and, for family carers, having some ‘ready made’ responses when encountering stigma. Dr Papadopoulos and colleagues are immensely grateful to all that participated and will be using the learning from this exercise to inform the development of a stigma protection intervention. The full results from the study will be published later this year.

Who funded the research?

The research is funded by the autism research charity Autistica.

Contact Details

For more information about the study, please contact Chris Papadopoulos ([email protected]).

Centre for Research in Autism and Education (CRAE), Institute of Education, University of London

The Medical Research Council funded researchers at CRAE to find out more about why sensory symptoms, such as hyper sensitivity (e.g. an aversion to fluorescent lights), hyposensitivity (e.g. only perceiving things when they are really vivid) and unusual interest in sensory aspects of the environment (e.g. being drawn to spinning things) often occur in autism. Dr Liz Pellicano (the director of CRAE) and her collaborator at the University of Florence, Professor David Burr, have suggested that people with autism may rely more heavily on ‘the here and now’ rather than knowledge gained from previous experience, when processing sensory information. To test this possibility, researchers were seeing children either at the Institute of Education or at home or at school to administer several tasks (fun computer games!) designed to find out more about children’s perceptual experiences. Parents were also be given questionnaires to fill in.

School of Experimental Psychology, University of Bristol

Many people believe that children with ASD have difficulty recognising emotion from facial expressions. However the research evidence is very mixed, with some studies finding these difficulties do exist and others finding that they don’t. By running an online study using new platform that allows cognitive testing over the Internet http://www.xperiment.mobi, we hope to recruit 100 children with ASD to complete a sensitive measure of facial expression recognition. This measure includes low intensity facial expressions, which are more like the facial expressions that are encountered in real social interactions. Children will also complete measures of verbal and nonverbal ability in order to match them with typical developing children. Each of the three tasks takes around 20-30 minutes to complete. We would also ask parents to answer some questions about their children’s diagnostic history and complete the SCQ. The protocol for this study has been preregistered on the Open Science Framework and can be found here: https://osf.io/ufajp/
 

School of Psychology, Queen’s University Belfast

Temper outbursts are a common form of challenging behaviour shown by children with intellectual disabilities and/or autism spectrum disorders, and associated with negative outcomes. Many of the outbursts are triggered by changes to children’s routines or expectations. This project will pilot a caregiver led intervention aiming to reduce such outbursts by signalling changes; testing the feasibility of this approach for evaluation in a clinical trial. Participants will be 50-60 children with an intellectual disability/autism spectrum disorder (7-16 years), and their caregivers. A structured interview and questionnaire will select children who show most frequent temper outbursts following changes (n=35-40; Sample 1). In addition, 10-24 parents and 10-24 professionals who have/are working with children who show challenging behaviour will participate (Sample 2).

Institute of Neuroscience, Newcastle University

This project is testing the effectiveness of a new questionnaire that has been developed to measure how children and young people with ASD experience the world. It is expected that the questionnaire will help people working with children and young people with ASD better understand how they are feeling.The lead researchers for this project are Dr. Jacqui Rogers, senior lecturer, Clinical Psychology, and Dr. Sarah Wigham, Research Associate, at Newcastle University.

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.

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.

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.

You can read the results of this study here: Autism and Technology guidelines

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.

You can read the result of this study here: EAR participant report v2

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.

 

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, [email protected]

 

Beena Koshy, Jeremy Parr and Helen McConachie

 

 

 

 

 

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
¾ 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.