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Research Autism: Completed Research Projects
This section of our website contains information about some of the research projects funded and completed by Research Autism.
Our programme of research was intended to make a significant and positive difference to the lives of people on the autism spectrum and their families.
Bullying in school
Description: This project was designed to establish the amount and form of bullying of pupils with Asperger syndrome in UK secondary schools
The research showed that a significant proportion of children with autism were bullied and were bullied more often than other children. The research also highlighted important behaviour patterns which might be linked to bullying and social isolation. The pupils with autism also reported having far few fewer friends and were less physically active, potentially leading to long term mental and physical health problems
Impact: This project provided important information about the amount and form of bullying of pupils with Asperger syndrome in secondary schools. This should help schools identify the circumstances around bullying of students with Asperger syndrome and a context for prevention and intervention.
More information: Bullying in schools project
Caregiver Stress Project
Description: Benefit Finding is an intervention in which participants take time each day to write about the positive experiences that accompany the stress of caregiving (such as greater appreciation for loved ones, increased appreciation of life, and development of interpersonal resource). It is believed that by doing this caregivers can improve their own mental and physical health and, in turn, improve the quality of life of the child they care for.
Impact: The potential overall reach as a result of the project is substantial. It is estimated that over 500,000 people in the UK are caring for a child with autism. The children they care for, and in many cases their siblings, are also expected to benefit from reduced stress levels in their parents.
More information: Caregiver Stress Project
Cybercrime
Description: Cybercrime is defined as crimes committed through the use of information communication technology. There is a growing perception among law enforcement agencies that a significant number of those being arrested in connection with cybercrime may be on the autism spectrum. This is an area that has received much attention in the media but little in the way of systematic research. Research Autism undertook a research project to explore the profiles of cyber offenders and their pathways into such offending.
Impact: There were a number of impacts from the project.
- Identifying whether or not an autism spectrum condition makes for a greater vulnerability to cyber offending
- Raising awareness of autism and cyber offending in law enforcement agencies
- Understanding the pathways into cyber offending to aid prevention
More information: Cybercrime Project
Cygnet Project: Mentoring Scheme for Young People with Autism Spectrum Conditions
Description: This project was identified as a priority by adults with autism. The Cygnet project is a specialised mentoring (life coaching) scheme for young people with autism.
The project has been designed by a group of adults with Asperger syndrome and high functioning autism facilitated by Research Autism. It is proposed to establish and evaluate the impact of such a scheme.
Impact: Working with the London South Bank University, this project was designed to provide
- reduction in social isolation, stress and anxiety for participating individuals
- achievement of personal goals for participating individuals
More information: Cygnet Project
Employment Toolkit
Description: Developing an online job-to-person matching and reasonable adjustment toolkit for employees with autism.
This project will use findings and feedback provided by employers and employees with autism to hone a toolkit, and design a cost-effective online platform to facilitate enhanced job matching and retention.
Impact: This toolkit will be designed to enable:
- the assessment of individual profiles of people with autism in terms of cognitive profiles, vocational preferences and employability skills sets
- enhanced matching of individuals to jobs
- the provision of person-centred guidance for employers to aid the process of making adjustments
The effectiveness of the toolkit will also be fully evaluated as part of this project which is being run with the University of Portsmouth.
Identifying early risk markers of self-injurious behaviour
Description: This project was designed to examine the amount, forms and causes of self-injury in people with autism.
Impact: This project provided research that identifies the amount, forms and causes of self-injury in people with autism. It also provided important information about the size of the problem and knowledge about how to intervene to reduce self-injury stances around bullying of students with Asperger syndrome and a context for prevention and intervention.
More information: Identifying early risk markers of self-injurious behaviour project
Prisons
Description: This project was designed to establish the prevalence of autism in prison populations.
Impact: This project was conducted with the University of Edinburgh and attempts to estimate the numbers of individuals on the autism spectrum in prison in Scotland with a view to a wider examination across the UK. . An essential part of the project is to validate a screen that was designed by Research Autism (Howlin,Cullen, Mills, Brugha, Corocombe, Wing) that is based on the ASDI (Asperger Syndrome and High Functioning Autism Diagnostic interview (Gillberg and Ratram 2001).
More information: We are currently awaiting a report from the University of Edinburgh.
Quality of Life Measure
Description: Ensuring a Quality of Life Measure for adults on the autism spectrum is appropriate and valid.
This project was undertaken by the Autism Research team at Newcastle University. With the input of people in the autism community, they explored the international standard World Health Organisation Quality of Life tool, WHOQOL-BREF, and additional Disabilities module, with permission from the WHOQOL group in Geneva. Rather than develop a new, stand-alone tool, they investigated the usefulness and acceptability of the WHOQOL items and whether there are issues to address in an add-on autism-specific set of items.
Impact: The new proposed items will be freely available. The validation study of the WHOQOL-BREF has the potential to ensure that services aimed at adults on the autism spectrum are effective in terms of outcome and cost.
More information: Quality of Life Measure
QUEST: Ascertaining prevalence, severity, impact and pervasiveness of emotional and behaviour problems in children with autism
Description: This project conducted with Guys Hospital was a response to a neeed for the rapid and reliable detection of potential problems in children with autism and the need for a reliable and valid clinical screen. that would identify the prevalence, severity, impact and pervasiveness of emotional and behaviour problems. It tested two different screening tools to see which is better at picking up those problems in community settings.
Impact: This project provided valuable information to health clinicians on the amount and form of emotional and behaviour problems in children with autism. It also determined which is the best, low cost, quick screening tool that can be used to identify young children with autism at risk of such problems. This will enable clinicians and others to provide targeted help to those children.
More information: QUEST: Ascertaining prevalence, severity, impact and pervasiveness of emotional and behaviour problems in children with autism
Re-Mapping Autism Research in the UK: Identifying Priorities for the Decade Ahead
Description:This project was designed to identify the current level or research activity worldwide that will provide a context and help to shape priorities for research over the next decade
Working with the Institute of Education UK we will revisit the data-sets generated by the original research, conducted ten years ago. We will also be involving the autism community in this project to inform our views on priorities.
Impact: This project is designed to
- Contribute to scientific understanding and knowledge of the status of international research
- Assist in setting priorities and helping to ensure that research funding is targeted on areas where it is most needed
More information:Re-Mapping Autism Research in the UK: Identifying Priorities for the Decade Ahead
The Royal College of General Practitioners Autism Clinical Priority Project: Overcoming Barriers and Achieving Access to GPs
Description
Each year the RCGP adopts three 'clinical priorities' in order to raise the profile and awareness of a particular condition among the GP population. The Clinical Champion for Autism is Dr Carole Buckley, a GP with a clinical practice in Bristol and mother of a son on the autism spectrum. Dr Buckley, together with a wide range of partners including people on the autism spectrum, parents and carers, professionals in the field, and the national charities Research Autism and the National Autistic Society, will lead on the delivery of a programme of activity that achieve the aims of the priority.
Likely impact
Over the course of the three years of the programme, the project aimed to:
- raise awareness and promote earlier diagnosis of autism
- ensure that education and training is compulsory for anyone supporting people on the autism spectrum and their families and carers
- improve access to health care for people on the autism spectrum
- improve outcomes for people on the autism spectrum and their families and carers
- encourage primary care to take part in evidence based research in autism
- support Clinical Commissioning Groups in making change happen
- make the lives of people on the autism spectrum and their families better
More information:RCGP Project
SCAmP: Early Intervention-Effects of Behavioural Approaches in Autism
Description: The University of Southampton study was part-funded by Research Autism and was designed as a test of whether EIBI for children with autism is beneficial in routine use in the UK when compared with standard pre-school provision.
Impact: This project reported that EIBI can be an effective and practical intervention for pre-school children with autism in the UK. It also showed that EIBI can lead to a number of significant improvements in children's capacities without negatively affecting the psychological wellbeing of their parents.
More information. SCAmP: Early Intervention-Effects of Behavioural Approaches in Autism
Sleep Database: Severe Sleep Related Issues in Children with Autism
Description: This project was a result of a Research Autism forum on sleep problems in autism and was designed to explore some of the severe sleep related issues that children with autism experience. Working with the University of Keele and the National Autistic Society an online database of sleep research is now available to clinicians, researchers and parents alike.
Impact: This project provided researchers with a greater understanding of the character and prevalence of sleep problems in individuals with autism. It also highlighted a number of key areas that warrant further research which will further knowledge and understanding whilst advancing the scientific research field.
More information. Sleep Database: Severe Sleep Related Issues in Children with Autism
Snuggledown: Sensory weighted blankets in children with autism
Description: This project was in conjunction with Guys Hospital London and was related to a priority identified by Research Autism concerning sleep problems in autism. This aspect of the work on sleep concerns a clinical trial of the effectiveness of weighted blankets in children with autism who suffer from poor sleep.
Impact: This project provided evidence of the effects of weighted blankets in children on the autism spectrum who suffer from poor sleep.
More information. Snuggledown: Sensory weighted blankets in children with autism
Test Foods Study: Preparation for a Large Scale Study into a Gluten-Free, Casein-Free Diet.
Description: The need for high quality research into biomedical interventions was identified as a priority when Research Autism was established. This partial study, funded by Research Autism was part of a broader research study called Can Diet Affect Autism (CANDAA), a large scale study into the effects of a gluten-free, casein-free diet. This specific aspect of the broader study investigated the feasibility of producing test foods which were transportable, easy to prepare, palatable and suitable for daily consumption by young children with autism.
Impact: This project provided important information about how to develop and test a range of double-blind test foods for regular consumption by young children with autism. This is essential preparation for a large scale multi-centre randomised control trial of gluten and casein free diets in the management of autism.
More information. Test Foods Study: Preparation for a Large Scale Study into a Gluten-Free, Casein-Free Diet.
Uncertain Futures
Description: Anxiety related to uncertainty about the future is a very real and significant concern for many individuals on the autism spectrum and their families. Many parents and carers will have increased concerns about what the future will hold for the individual on the autism spectrum they support or care for, once they die or are no longer able to provide the level of support previously given.
Difficulty tolerating uncertainty about the future has been identified as a major contributor to the development and maintenance of anxiety disorders. Previous research has found that many family members of adults on the autism spectrum experience mental health difficulties and individuals on the autism spectrum are also more likely to experience difficulties with anxiety.
Impact: This research helped us to find out how we may be able to provide appropriate support to increase wellbeing in individuals on the autism spectrum and their carers.
More information: Uncertain Futures
Widening Reach
Description: Widening the reach and impact of our information service
Research Autism has a firm commitment to ensuring that our independent and impartial information about autism treatments and therapies reaches those who need it the most, particularly disadvantaged communities. We therefore continue to seek ways in which to make our information more accessible particularly, though not exclusively, by utilising new and available technologies.
Impact: Improved awareness of autism, the issues facing people on the autism spectrum and evidence-based interventions designed to help improve the quality of life for people on the autism spectrum.
More information:Widening Reach
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- Updated
- 04 Sep 2019