Evaluation of interventions for children with autism spectrum disorder (ASD) is hampered by the multitude of outcomes measured and tools used. Measurement in research with young children tends to focus on core impairments in ASD. We conducted a systematic review of qualitative studies of what matters to parents. Parent advisory groups completed structured activities to explore their perceptions of the relative importance of a wide range of outcome constructs. Their highest ranked outcomes impacted directly on everyday life and functioning (anxiety, distress, hypersensitivity, sleep problems, happiness, relationships with brothers and sisters, and parent stress). Collaboration between professionals, researchers and parents/carers is required to determine an agreed core set of outcomes to use across evaluation research.

Background: The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children’s progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact. Objectives: To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents. Methods: The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers. Results: The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains ‘Impairments’, ‘Activity Level Indicators’, ‘Participation’, and ‘Family Measures’. In review 1, 10,154 papers were sifted – 3091 by full text – and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a ‘recommended battery’ for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents). Conclusions: This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research. Future work: Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention. Study registration: This study is registered as PROSPERO CRD42012002223. Funding: The National Institute for Health Research Health Technology Assessment programme.

Journal of Research in Special Educational NeedsVolume 15, Issue 2 p. 154-160 SEN Policy Research Forum Chapter 4: Autism: enhancing whole school practice and the skills and understanding of the workforce Dr Glenys Jones, Dr Glenys JonesSearch for more papers by this author Dr Glenys Jones, Dr Glenys JonesSearch for more papers by this author First published: 05 February 2015 https://doi.org/10.1111/1471-3802.12101_5Citations: 2Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat Citing Literature Volume15, Issue2April 2015Pages 154-160 RelatedInformation

he aim of this paper is to explore the current criteria for giving a diagnosis of autism, the potential benefits of diagnosis and the reasons why this may be missed or misdiagnosed and the possible consequences. It considers whether diagnosis is always necessary and if so, for whom and when. If diagnosis is made to inform intervention, does this happen and from whose perspective and what is the research evidence for current approaches in autism? As there is no definitive medical or genetic test for diagnosing autism, then it is always subjective and diagnostic rates will vary across services and within and between local authorities. The case is made that professionals need to develop ways to ensure that autistic individuals who would benefit from an autism diagnosis are identified so that their needs are met in a timely and appropriate way to prevent the development of mental health problems and to enable a good quality of life. Finally, focusing on the positive aspects of autism and enhancing the wellbeing of parents, carers and the staff in schools and settings should have positive outcomes for all.

A national, face-to-face 3 tier training programme for all professionals working in various early years settings for children up to 5 years. Including the early years autism standards and the early years autism competency framework.

Previous research has demonstrated that the way adults interact with children with autism can have a great impact on their spontaneous communication. However, to date, few studies have focused on modifying adults' behaviour and even fewer have been conducted in school settings which actively involve teaching staff in designing the intervention. The aims of this study were twofold: (1) to explore the extent to which staff were able to build on their good practice and alter their interactive style and (2) to then assess the effects of this change on children's communication. The study used an action research methodology and involved three members of staff and six children with autism. The staff and the researcher developed an Adult Interactive Style Intervention (AISI) in partnership. This was based on two theoretical models of child development and disability. Data were collected pre- and post-intervention and at follow-up (12 months after the end of the main study) to measure change. The results showed that staff considerably increased the number of times they used AISI principles post-intervention and that this change had a significant impact on the children's spontaneous communication. All three staff took an active participatory role in the study which was considered a very positive and empowering experience.

This workshop introduced the Autism Education Trust’s training programme and suite of materials developed by the Autism Centre for Education and Research (ACER) at the University of Birmingham.

The range of educational options available to a child with Autism and Asperger syndrome is broad, but choosing the right path can often be a complex task for all involved. This book provides information and advice for professionals and parents making crucial decisions about meeting the needs of children with autistic spectrum disorder. It covers the range of intellectual ability from those having severe learning difficulties to those of above average intelligence. Practical advice for those working with children from preschool to post-16 is given on: choosing the most appropriate educational placement; making decisions on which educational interventions to follow; creating an effective educational environment; working with staff and other children to maximum effect; writing effective individual education plans; working with parents and families; enabling a smooth transition between classes and stages of education; and life beyond school.

The framework is presented as a self-evaluation tool that practitioners can use to rate their current practice and understanding against a set of descriptors (knowledge, skills, personal qualities). Feedback should inform practitioners’ professional development plans and content of any future training. The development of this framework has been carried out in close collaboration with the development of the AET schools autism standards as well as the AET schools programme.