A FUTURE MADE A FUTURE MADE TOGETHER TOGETHER SHAPING AUTISM SHAPING AUTISM RESEARCH IN THE UK RESEARCH IN THE UK Centre for Research in Autism and Education (CRAE) Institute of Education University of London 20 Bedford Way London WC1H 0AL

+44(0)20 7331 5140 [email protected] ioe.ac.uk/crae A FUTURE MADE TOGETHER SHAPING AUTISM RESEARCH IN THE UK

Liz Pellicano, Adam Dinsmore and Tony Charman Contents Foreword

3 Foreword more for less; and there is fierce competition for limited resources. 4 Executive Summary It is also a time for the autism community as a whole – autistic 6 Preface people, families, researchers, policy 7 Abbreviations makers and others – to grasp the opportunities presented by the 8 Introduction heightened interest in, and awareness of, autism. 8 Setting the Scene

13 About the Report As someone who has campaigned It is therefore vital that we over many years to achieve better have available the best possible 14 A History of Autism: outcomes for people with autism, information in order to make Key Dates I am delighted to be writing this informed decisions about future foreword. This report presents a investment in autism so as to make 18 Key Areas of Autism Research robust and detailed analysis of a tangible, positive difference to 20 Autism research activity in the autism research in the UK and people’s lives. And I firmly believe UK: funding internationally, alongside the views that A Future Made Together of autistic people and their families provides just that. 24 Autism research activity in about what the research agenda the UK: publications means to them. The research team I commend Research Autism for 28 Views from the UK has analysed several thousand commissioning this seminal report, autism community sources of data and collated the and the research team of Professor views of many hundreds of people. Tony Charman, Dr Liz Pellicano and 36 Conclusions In building the most comprehensive Adam Dinsmore for producing a picture yet of the autism research high quality report which makes i Appendices landscape, the report provides a real such a rich contribution to the vii Glossary of Terms opportunity for progress and change. autism research agenda.

viii Notes We are facing challenging times: Baroness Browning there are increasing financial Patron, Research Autism constraints and funding cuts; many Vice President, National organisations are being asked to do Autistic Society Key recommendations Given the discrepancy between the Executive nature of the research currently funded and conducted in the UK and summary the priorities of the broader autism community, the Report stresses the need for researchers and research funders to work more collaboratively in future with the autism community in order to Autism directly or indirectly affects funding portfolios of 20 UK grant-giving brain and cognition of autistic people. advance progress in UK autism research millions of people’s lives in the United organisations for the period of 2007 – Comparatively little research in the UK and make a real impact on the lives of Kingdom. There have been several 2011 and analysed over 6,000 journal is conducted on diagnosis, treatments autistic people and their families. legislative, policy and service initiatives articles published in 2001 or 2011. and interventions, services, and in recent years aiming to improve the societal issues. As such, the Report outlines three life-chances of autistic people. Autism More than 1,600 people responded to specific recommendations. research has also taken great strides an online survey designed specifically The Report further shows that the UK toward understanding autism, its causes for the project and more than 70 people autism community is critical of this We need significant investment and its consequences. This research if spoke to us in-depth, either face-to-face research concentration. Two-thirds of in areas of autism research currently put into practice has the potential to or on the telephone. They told us about all stakeholders were either dissatisfied under-resourced in the UK, without transform the everyday lives of those what they thought of current autism or very dissatisfied with the pattern of undermining the centres of excellence with autism and their families. research in the UK and where the current funding for UK autism research. that already exist. Research must be funds towards autism research There was broad consensus among targeted towards enhancing the life Yet there remains a huge gap between should be prioritised. autistic people, family members, chances of autistic people, including knowledge and practice, which means practitioners and researchers that future research into how autistic people think that, for the most part, the advances in Key findings research should be prioritised on those and learn, what the best ways are of research fail to impact upon those who The Report confirms that UK autism areas that affect the day-to-day lives promoting life skills and helping to need them most: autistic people, their research output in terms of journal of autistic people and their families – identify effective public services. parents and carers and those who help publications has grown dramatically over research on public services, life skills, support them. Many autistic people also the past 10 years, with the number of cognition and learning and the place of We call for greater strategic feel they are unaware of what is being articles doubling between 2001 and 2011. autistic individuals in society. They called coordination, improved dialogue and researched, what the key findings are Funding for autism research has also for a more balanced profile of research, joint agreement of funding priorities and who gets to set the future risen. UK research organisations awarded weighting research with a direct impact between research funders, researchers research agenda. almost £21 million spread over 106 on the daily lives of autistic people more and the broader autism community. This research projects between equally with core areas of basic science can be achieved through the formation This Report, commissioned by the 2007 and 2011. than is presently the case. of a body with strategic oversight and by encouraging partnerships between UK charity Research Autism, aims to researchers in well-established areas describe the current landscape of autism The Report also shows, however, Conclusions and those in other areas currently less research in the UK, embedded within an that the UK lags behind some other We need greater investment in UK autism well supported in the UK. international context, and to compare the countries, with the average research research, particularly in those areas that nature of the research being conducted spend per autistic individual being 18 matter to autistic people, their families While formal partnerships may take with the views and perspectives of times higher in the US than in the UK. and those who work with them. We some time to be established, greater key stakeholders, including autistic Growth in autism research activity is need to work together to know what efforts can be made immediately by people, family members, also slower in the UK than it is in the matters, to ensure we set the right individual autism researchers and practitioners and researchers. US and other parts of the world and priorities, and to make UK autism research funders to involve autistic is heavily concentrated on a few key research really count. people and the broader autism Methods research areas. More than half of all community in the design of research, in We set out to achieve these aims autism research published and funded The future of UK autism research its conduct and in the translation of its through detailed research and through in the UK is devoted to understanding must be made together. findings to issues of everyday, direct consultation. We surveyed the more about the underlying biology, practical concern. 4 Abbreviations APPGA Preface All Party Parliamentary Group on Autism ARM UK Autism Rights Movement UK ASD Autism Spectrum Disorder CSO Chief Scientist Office DfE Department for Education DH Department of Health DSM-IV/DSM-5 Diagnostic Statistical Manual of Mental Disorders 4th/5th Edition EPSRC Engineering and Physical Sciences Research Council ESRC Economic and Social Research Council IACC Interagency Autism Coordinating Committee The charity Research Autism was for spearheading the fundraising for Team, Merton Mencap, the National ICD-10 established following a project this project, to our partners, Deepa Autistic Society’s West London Branch, International Statistical conducted a decade ago to provide Korea, Richard Mills and Helen Finch Phoenix School, Queensmill School, Classification of Diseases and Related Health Problems an initial mapping of UK autism at Research Autism, and to members and the Pan London Autism Schools 10th Edition research activity.1 As a 10-year follow of the Advisory Group: Chris Atkins, Network (PLASN). up, Research Autism commissioned Virginia Bovell, Baroness Angela IMFAR International Meeting for Professor Tony Charman (King’s College Browning, Barry Carpenter, James Thanks also to all those who made this Autism Research London, Institute of Psychiatry), Dr Liz Cusack, David Ellis, The Goth, research and the Report come together: Pellicano and Adam Dinsmore (Centre Sarah Shenow, Helen Pearce to Janina Brede and Rebecca McMillin MRC for Research in Autism and Education, and Simon Wallace. for assistance coding thousands Medical Research Council Institute of Education, University of of articles, to Erica Salomone and NAS London) to lead the research upon We are also indebted to the autistic Mark Taylor for help during the focus National Autistic Society which this Report is based. The adults, parents of autistic children, groups, to Dan Sinclair for design and NICE authors are solely responsible for headteachers, teachers, SENCOs, production, to Simon Baron-Cohen, National Institute for its content, including any errors practitioners, clinicians, academics Virginia Bovell, Patricia Howlin, Jane Health and Care Excellence or factual inaccuracies. and funders who so graciously gave Lewis, Damian Milton and Marc NIHR up their time to take part in the Stears for helpful comments on a National Institute for Health We are very grateful to our funders, survey, focus groups or interviews. In previous draft of this report, and to Research the Inge Wakehurst Trust, the Charles particular, we would like to thank ADHD all the individuals, families and OARC Wolfson Foundation and The Waterloo and Autism Support Harrow, London schools who contributed Office of Autism Foundation, to Sir Christopher Ball Borough of Barnet Autism Advisory photographs to this report. Research Coordination 6 Introduction

Setting the Scene Act 2009 and similar policy initiatives It is to that end, Autism affects the way a person in the devolved authorities in Scotland, therefore, that interacts and communicates with Wales and Northern Ireland, the 2010 our first aim is others and experiences the world Department of Health Adult Autism to present the around them. 1 in every 100 people in Strategy, and the suite of three first detailed the UK is on the autism spectrum. This guidelines from the National Institute overview both means if you are not autistic yourself, for Health and Care Excellence (NICE) of what research you will know someone who has on the identification, diagnosis and is currently autism, whether they are your son or management of autism in children, being conducted daughter, your mother or father, your young people and adults. and funded in cousin or neighbour or your the UK and to colleague or pupil. Second, academic researchers have compare that begun to learn more about autism itself with the research Despite the high prevalence of autism and have secured greater amounts of conducted the opportunities and life-chances for funding to be able to accelerate their and funded autistic people remain often severely work. It is increasingly suggested that elsewhere, limited in comparison with the non- research is on the edge of some major especially in the autistic population. Autistic people are ‘break-through’ moments, capable both United States. less likely to have a well-paying job of enhancing our understanding of the than non-autistic people, many have nature of autism and of enriching the Our second aim problems in their social lives, with lives of autistic people and those who is to establish a limited number of friends outside care for them. how directly that their immediate family, and many also research maps on struggle with their health and their It is the second of these developments to the concerns material well-being.2,3 In a time of that provides the subject for this and interests of shrinking public services, many autistic Report. For although it is widely autistic people people and their families also worry suggested that research into autism themselves that the services that have made their is capable of making a real difference and the lives more manageable are in danger of to the well-being of autistic people, broader autism being reduced.4 very little is yet known about how community. that might happen or whether autistic Two recent developments have people themselves, their families, It is our belief promised to improve this picture. friends and carers share in that that this is a optimism. In fact, remarkably little vital first step First, policy-makers have begun to be is known at all about what research in ensuring that the research that is are autistic or who in other ways more alert to the specific concerns and is being conducted in the UK, how it conducted and funded here in the live with autism. requirements of the autism community. relates to the real-world concerns of UK is able to contribute not only to In the UK, this has been reflected autistic people and how it might be expanding our knowledge about autism About this Study in several public policy and service shaped more effectively in the future. but also to enhancing the opportunities A very large proportion of autistic developments, including the Autism and enriching the lives of those who people and their families will have 8 9 participated in academic research at which captured both recent and current research activity internationally, • Competitive grants through some point in their lives, either as research activity in the autism field especially in the US. non-government, charitable children in educational studies or and identified priority areas for future organisations, which may be psychological investigations or later funding and research activity. This 2. To conduct a large-scale specific to autism (e.g., Autistica; as adults participating in projects report found that while the UK was consultation with a broad range Research Autism) or include examining medical phenomena or, seen to have many strengths in autism of stakeholders, including autism as part of a broader occasionally, public service delivery. research, funding and research activity autistic people, their families, portfolio (e.g., Wellcome Trust; Often, however, the results of these into interventions and education and practitioners and researchers Leverhulme Foundation; The projects and their consequences for into family and service issues were about their research priorities, via Waterloo Foundation). both scholarship and the future of severely lacking. online surveys and more in-depth • Competitive funding via specific autism services remain unknown by interviews and focus groups. government tenders for autism- participants. Some individual research This current Report is the follow-up to related research projects (e.g., projects in autism hit the headlines that earlier study. It sought to be more About the Methods projects funded by the Department and gain widespread public attention. comprehensive and far-reaching in There are several channels through of Health as part of the Adult But many others go largely unreported its approach. which UK researchers can obtain Autism Strategy; Department by the media, although they funding for autism research: for Education). can have significant impact in the The main objectives were: • Competitive grants through scientific world. We searched and catalogued all funding 1. To provide a systematic summary government research organisations awards made by these different of the current state of UK autism (e.g., Economic and Social Research In 2004, partly to respond to this lack channels between 2007 and 2011 in the research both in terms of research Council; Medical Research Council) of awareness, a report was published UK and compared these to what has funded (grants awarded) and and the National Health Service titled Mapping Autism Research: been funded in the US. research output (published articles) (National Institute for Identifying UK Priorities for the Future,1 and to make comparisons with Health Research).

What is autism? spoken language is limited or absent for their needs to be satisfactorily Research has not yet identified genetic altogether while for others, speech can met. Autism is more common in boys or biological signature(s) for autism. According to current diagnostic criteria, be fluent, but their use of language to and men (than in girls and women) We know that autism is a strongly people with autism show a set of core communicate with others can seem but this sex difference is not well genetic condition, which can consist behaviours or characteristics, including awkward and often one-sided to understood and one area of current of both heritable and sporadic (non- difficulties in social communication non-autistic people. Some individuals interest is whether the presentation inherited) forms. In some cases, and rigid and repetitive ways of want to be around others and to have may be different in girls and women. autism might be caused by non- thinking and behaving.9,10 Unusual friends, while others prefer to be genetic factors, but such instances reactions to some sensations (such alone. The autism spectrum therefore The core features of autism are probably account for only a small as the feel of clothes or the smell includes children, young people thought to be underpinned by minority of cases.13 of perfume) are common,11 as are and adults who vary considerably. differences in various aspects of co-occurring mental health In addition, the capabilities and cognition, that is, the way that Although there are many treatments problems, especially anxiety difficulties of any individual will also autistic people think and learn. and interventions available for and attentional difficulties.12 change with age, waxing and waning Psychologists have pinpointed many children, young people and (to a lesser as the person develops. strengths in autistic cognition, extent) adults with autism, the reality There is, however, much variation in including the way that autistic people is that many of these approaches have the way that children, young people Autism can usually be diagnosed well perceive, attend to, and remember not been rigorously tried-and-tested and adults with autism manifest before the age of 5 years. But some certain types of information. Other and even in those that have, we do these different behaviours. Some individuals, especially those with research has highlighted difficulties not know which approach works best individuals may also have a severe good language skills and of average in understanding and thinking about for any individual.14,15 intellectual disability, while others will or above-average intellectual ability, other people and other situations have average or advanced intellectual might not be identified as autistic until and in the ability to flexibly regulate abilities. For some individuals, much later, making it even less likely thoughts and actions.

10 11 priorities. Unlike in some other About the Report countries, for UK autism research, there This report is structured into 3 chapters is currently no high-level systematic and a conclusion. process for identifying and coordinating autism research across organisations to The first chapter describes the results ensure that funds are directed to areas from the survey of UK funding for where they are most needed and can autism research. The second presents make the most impact. the findings from the analysis of autism research publications. The third provides Research efforts have been more an overview of the findings from the strategic in the United States5,6. The extensive consultation with stakeholders. Interagency Autism Coordinating The conclusion further summarises the Committee (IACC) was established findings and offers recommendations, highlighting key strategic messages. through The Children’s Health Act of 2000. The IACC is responsible for This Report is aimed at the research establishing priorities, communicating community, the autism community and trends, monitoring autism-related people who work with them on a daily activities, and developing a strategic basis, and the public. Research has plan for autism research through the potential to transform the lives of extensive consultation with federal autistic people and their families. Only agencies, scientists, advocacy and by working together can we find the research organisations, autistic common ground between what is good people and their families and the for autism research and what is in the We also surveyed UK autism research To gain an understanding of best interests of the autism community. activity via research publications. stakeholders’ priorities for the future of general public. On the basis of these We searched and analysed journal UK autism research, we conducted in- activities, the IACC makes regular articles containing any of a selection depth interviews and focus groups with recommendations for autism research of autism-related search terms in 12 autistic people, parents of children funding to the US federal government. Terminology online academic databases published with autism, autism practitioners and in 2001 or 2011. This allowed us both autism researchers and funders. The In 2010, the IACC published its Autism: This term refers to the condition of all children, young people to summarise the current state of UK views and perspectives of a large Strategic Plan for Autism Spectrum and adults who fall on the autism autism research output and to compare number of stakeholders were also Disorder Research, organised around critical areas related to biomedical and spectrum, including those meeting it to what it was like 10 years earlier. captured via an online survey. This diagnostic criteria for childhood autism, exercise continues a much-needed services-related research, which were identified as being important to autistic Asperger syndrome, atypical autism and For these purposes, we defined dialogue between these communities pervasive developmental disorder (in people and their families. It has since primary research as activities that and researchers. Their responses have DSM-IV) and autism spectrum published two key documents, one involve the collection and analysis of the potential to shape the future of disorder (in DSM-5). new data, or new analysis of existing UK autism research. comprehensive analysis of the funding Autistic person and person with autism: data. The methods used can vary portfolio of major US federal agencies The term “autistic person” is the 7 across research projects and disciplines At present, research priorities and private organisations in 2010 preferred language of many people and can include quantitative research are largely set within individual and a second thorough evaluation on the spectrum. In this report, we (collection and analysis of numerical organisations. They are influenced of autism-related English-language use this term as well as person-first language to respect the wishes of all data), qualitative research (systematic by researchers’ intellectual interests, research articles published globally 8 individuals on the spectrum. enquiry into meaning, such as peer reviewers’ views and interests, between 1980 and 2010 . Throughout this report, we refer to the findings Stakeholder: anyone with an interest ethnography and case-study methods) the amount of research capacity in a in autism research. or a combination of the two. Literature particular area and, to varying degree, of both IACC reports and make direct comparisons between autism research UK autism community: This term refers reviews, editorials and commentaries the interests of key stakeholders. to those UK residents who are autistic activity in the UK and that of its major are considered to be secondary themselves, who care for those with comparator, the US. research and are therefore not Each organisation currently has its autism, or who work with autistic included in our survey. own processes to help with setting children, young people and/or adults.

12 A History of Autism: Early research Asperger Syndrome 1965: Michael Rutter 1965 1970 Key Dates publishes his first 1944: Hans Asperger, peer-reviewed paper working in Vienna, on ‘childhood psychosis’. “A unique syndrome” describes ‘autistic 1970: London-based psychopathy’ in a researchers, Neil O’Connor 1943: Leo Kanner, working series of intellectually and Beate Hermelin, provide in Johns Hopkins Hospital able children, which the first in-depth study of in Baltimore, USA, describes 1943 later becomes known as the psychological features a unique syndrome, Asperger syndrome. of children with autism. ‘infantile autism’ in 11 children with autism. 1962: The UK parent- Autistic perception 1944 1962 advocacy group, now known as the National Autistic Society, is founded. Theory of mind DSM-III NAS formed 1985: Simon Baron-Cohen, 1980: DSM-III Alan Leslie and Uta Frith 1985 recognises infantile (London, UK) propose autism under that autism is caused by the umbrella 1979 1977 fundamental problems of pervasive 1979: Lorna Wing and 1977: The first twin developmental in theory of mind. Judith Gould first describe study by Michael Rutter disorders. the ‘triad of impairments’ and Susan Folstein in their Camberwell (UK) shows that autism is epidemiological study. highly heritable.

“Triad of impairments” “Highly Heritable” 1980

1987: The revised DSM-IV Revision 1987 DSM-III broadens the Autism journal founded definition of autism, 1994 1994: The diagnostic which becomes known as 1997: Autism: The criteria for autism are ‘autistic disorder’. International Journal 1993: Autistic self-advocate broadened once more of Research and Jim Sinclair challenges the in the fourth revision Autistic Disorder Practice is founded, notion of ‘autism as tragedy’ to the DSM (DSM-IV). in association with in his widely acclaimed paper 1993 the UK’s National titled “Don’t Mourn For Us”, Autistic Society. presented at the Autism 1997 Network International.

“Don’t Mourn For Us” 1989 False MMR Link

1998: The immediately 1989: World Autism 1991 controversial and now Awareness Day is retracted Wakefield study is 1991: Uta Frith provides celebrated for the 1996: Lorna Wing coins the published, which suggests the first-ever English first time, before term “autism spectrum” to a possible causal link translation of Asperger’s being designated by describe the wide variability between the MMR 1998 1944 paper. the United Nations’ General 1996 in symptom presentation. vaccination and autism. Assembly in 2007. Frith translation “The Autism Spectrum” World Autism Awareness Day

14 15 2004 2003

2004: The first “1 in every 100” review of UK autism 2003: The charity Research research, Mapping 2006: Population-based study estimates Autism is established, the MRC review of autism research Autism Research the prevalence of autism to be 1 in every only UK charity exclusively is published. 100 children in the UK. 2001: The UK’s Medical Research dedicated to research into Council undertakes the first Mapping Autism report interventions in autism. comprehensive review of UK research into autism on behalf of ‘Research Autism’ 2006 2006 the Department of Health. 2006: The Autistic Self ASD action plan in Wales and NI Advocacy Network (ASAN), 2001 a US-based advocacy Establishment of IACC 2008: The Welsh Assembly organisation run by and for Government’s Autism Spectrum autistic adults, is founded by Ari Ne’eman 2000: The US Children’s Health Act Disorder (ASD) Strategic Action Plan and Scott Michael Robertson. 2000 establishes the Interagency and the Northern Ireland Assembly Autism Coordinating Committee 2000 ASD Strategic Action are introduced. ASAN formed by & for autistics (IACC) to coordinate autism research in the US.

2008 2008

2008: The International APPGA formed Meeting for Autism Research (IMFAR) is held in ARM UK formed London, the first time outside of North America. 2009: The UK autistic- led self advocacy 2000: The All-Party 2009 IMFAR comes to London organisation, Autism Parliamentary Group Rights Movement UK on Autism (APPGA), (ARM UK), is formed. a cross-party group 2000 of MPs and Peers is set up to improve 2009 UK-wide Autism Strategy Plans awareness of autism 2009: The first study on the 2011-2013: The devolved governments in and to lobby the economic consequences of autism Northern Ireland, Scotland and Wales all Government for for the UK is published, estimated at publish Autism Strategy plans with the aim improved services for more than £27 billion per year. of delivering quality services for people autistic people and Economic Impact with autism and their families. their carers. 2009 2011 2011 -13 -13 “Neurodiversity” coined 2009: England DoH Adult Autism Strategy 1998: Neurodiversity, the notion that people experience introduces its first the world differently based on their neurological attributes, disability-specific 2010: UK’s Department of Health announces law, the Autism is coined by Harvey Blume in The New York Times. an Adult Autism Strategy, which sets a 2011-2013: The National Health Act 2009. clear framework for all mainstream services Service’s National Institute for across the public sector to work together Health and Care Excellence (NICE) Autism Act 2009 for adults with autism. announces a suite of guidelines on 1998 the identification, diagnosis and management of children, young people and adults with autism.

2010 NICE Guidelines

16 17 Key areas of autism research

One of the primary aims of this report was to provide knowledge of the current landscape of Diagnostic and screening tests, early signs, autism research across the UK – Diagnosis that is, what type of research is biomarkers, symptomatology, subgroups being funded and published. We therefore developed a taxonomy of research areas, which drew Neural systems, molecular Biology, pathways, developmental heavily on the research questions Social and ethical Brain and trajectory, cognitive studies, from the US’s 2011 IACC Strategic issues, biographical Societal Cognition immune and metabolic / ethnobiographical Issues pathways, neuropathology, Plan for Autism Spectrum Disorder studies, research policy, 5,7,8 biosignatures, computational Research (see Appendix C economics of autism studies, co-occurring for details of changes). These conditions, sensory and research questions were Autism motor functions developed with extensive input Research Areas from key stakeholders in the US, and their use allowed us to make comparisons between the UK and Genetic risk factors, the US in terms of both research Utilisation and access, environmental risk factors Causes funding and research output. evidence-based and the intersection of practices, cost-effective Services genetic and environmental service delivery, risk factors (including There were 6 different research practitioner training, epigenetics) areas, shown opposite, which family well-being, safety, community, inclusion capture a range of different Treatments research topics. These research and interventions areas were broken down further to enable more fine-grained Pharmacological, behavioural, educational, analysis. The full list of topics complementary, dietary, occupational, sensory-based therapies, technology-based covered in each area is provided interventions and supports in Appendix C.

18 19 Autism research activity in the UK: funding

We conducted a comprehensive review project, we extracted the project title How much funding Which areas of How does of government and non-government and abstract, the total amount of the was directed towards autism research the pattern of UK funding for UK autism research. This award and, where possible, the age of UK autism research attract the funding compare to review sought to answer three the participants involved in the research. between 2007 and 2011 most money that of the US main questions: When this information was not available, we made direct contact with these ..across Funding Sources 1. How much UK autism research was agencies requesting access to such Total funding funded between 2007 and 2011 and for UK autism Private / information (see Appendix A for details). £20.8 Philanthropic who funded it? research between 2007 and 2011... 106 Government million different projects. 2. What areas of research are How much UK autism research being addressed? was funded and who funded it? The USA spends 3. How does the pattern of UK funding Our search identified a total of 106 compare to that of the world-leader competitive funding awards made in autism research, the US? between 2007 and 2011. Over this period £20,829,118 was spent on more than the UK To begin, we systematically searched all autism research by UK funders, on autism funding. publicly available (online) information approximately £4 million per year. The for successful funding awards for total number of projects represents a US autism-related research from 20 UK UK significant increase on an earlier period UK autism research is dominated by work on Biology, Brain and funding organisations. For each funded (1996 – 2000) during which 46 projects Cognition in terms of both number of awards and money spent, Research funding were funded.1 This increase is largely with comparatively little research being funded in the other 5 areas. Table 1 is relatively due to an expansion in investment in evenly distributed Source of Projects % of Total 16,17 amongst the Funding funded Funding Funding research generally and in autism funded different research projects MRC§ 11 42% £8.7m research in particular by existing and areas in the US included § new UK funders. ESRC 24 19% £4.0m compared to the adults... DH/NIHR§ 7 9% £1.9m UK, though neither £4.26 £75.79 Wellcome Trust† 9 8% £1.6m Table 1 shows how the funds are country provides ...for every ...for every significant funding ...and focused Autistica† 10 7% £1.5m distributed across the various sources. autistic person autistic person for Lifespan / of these, on adults The Economic and Social Research Council in the UK. in the US. just British 16 3% £0.6m Societal Issues. exclusively. Academy§ (ESRC) made more funding awards than EPSRC§ 1 2% £0.5m any other organisation (total of 24) while CSO§ 6 2% £0.5m the Medical Research Council (MRC) and 2011 and private/philanthropic research in the UK. But this investment Waterloo 10 2% £0.4m awarded more money for autism research organisations funded £4.4 million is not on par with recent figures from the Foundation† than any other organisation (£8.7 million (21%), a ratio that parallels the US. These figures show that, in 2010, the Research 5 2% £0.4m across the 5 years) and more money distribution of public/private funding combined total spend on autism research Autism† per grant than any other organisation for autism research in the US.7 (from public and private sources) was Nuffield 3 2% £0.4m 18 Foundation† (average of £791,000 per grant). $357 million (currently £234 million). DfE§ 1 1% £0.2m The overall increase in number of In 2010, the UK spent just £2.6 million. Inge-Wakehurst 3 1% £0.1m Government organisations provided projects funded suggests continued When adjusted for population size, Trust† £16.4 million (79%) between 2007 support for, and investment in, autism the amount spent on autism research § = Government Funding; † = Philanthropic Funding 20 21 How does the pattern of UK included adults and, of these, 11 (14.9%) funding compare to that of the US? focused on adults exclusively. Given that If we compare the pattern of UK research the majority of autistic people in the UK funding between 2007 and 2011 to the are adults, the proportion of research pattern in the US in 2010,7 there are funding directed towards adulthood is distinct similarities and differences. low compared to that directed towards children and young people. As in the UK, the US research area receiving the most autism research Key findings funding in 2010 was devoted to • Total funding for UK autism research understanding the underlying Biology, between 2007 and 2011 amounted Brain and Cognition of autism (32%). Yet to £20.8 million spread across 106 2010 autism research funding in the US different projects, mostly focused was more evenly distributed across the on children with autism. 6 research topics than in the UK (across in the UK during 2010 was £0.04 per Funding awards in the area of Biology, • The amount spent in the US on 19 20 2007-2011), with the exception of funding capita compared to £0.76 in the US. Brain and Cognition far outstripped autism research in 2010 alone is for Societal Issues / Lifespan Issues When we adjust this figure again to all other areas of autism research – 89 times that spent in the UK. This for which funding was scarce in both examine amount of research spend per both in terms of number of awards difference in investment is striking countries. This difference in emphasis is individual with autism, the UK spent made and money spent. More than even when population rates are likely attributable to the strategic oversight £4.26 for every person with autism. The half (56%) of the UK grant expenditure taken into account. provided by the IACC in the US and the US spent £75.79 per autistic for 2007 – 2011 went • Research funding is relatively evenly comparative lack of oversight in the UK. individual – 18 times the towards grants on distributed amongst the different amount spent in the UK. Biology, Brain and research areas in the US compared Cognition, totalling Who was the research targeted towards? to the UK, though neither country This pattern is in line with £11.6 million spread provides significant funding for We categorised each research grant spending on research across 60 research grants. Lifespan / Societal Issues. UK autism according to the age of the participants more broadly, where the These included grants on research is dominated by work on taking part in the research. Of the 74 UK’s gross expenditure on Research & cortical development, social cognition Biology, Brain and Cognition in terms grants from which a target age could Development is below that of several and animal models of autism. of both number of awards and money be clearly identified, the majority of key comparator countries, including spent, with comparatively little these (71.6%) focused on children and the US, both proportionally and in The next largest category of funding research being funded in the 21 adolescents. Only 21 projects (28.4%) absolute terms. Yet the differential was Treatments and Interventions, other 5 areas. gap in spending between the UK making up 18% of all funding in the and the US in autism research is UK. A total of £3.8 million was spent significantly higher. on 14 projects in this area during the 5-year period, including grants Fig 1. Autism Research Funding by Fig 2. Autism Research Funding by Research What areas of research on cognitive behavioural therapy, Research Category in the UK (2007-11) Category: UK vs. US are being addressed? socially assistive technology and To determine which areas of autism parent-mediated interventions. Fifteen research were funded during 2007 – percent of funding addressed the 2011, we conducted a content analysis Causes of autism (£3.1 million), 5% of all 106 competitive grants. Grants of funding was devoted to research UK US were classified in terms of the area of on Services for autistic people and research (see 6 categories on p.18- their families (£1 million) and 5% 19) and the age of the participants was directed towards research on involved in the research (e.g., children, Diagnosis, Symptoms and Behaviour. Diagnosis, Symptoms & Behaviour % of total spend Biology, Brain & Cognition adolescents, or adults). Figure 1 Research into Societal Issues received Causes illustrates the breakdown of UK the least total funding (£0.3 million), Treatments & Interventions research grant funding for each area. only 5 awards in total. Services Diagnosis Biology Causes Treatments Services Societal Societal Issues 22 Autism research activity in the UK: publications

Publications represent a major B for inclusion criteria), 548 were How much What areas Are there any How does the indicator of research activity. We published in 2001 and 2,101 were has UK autism of research patterns of change pattern of UK used the available online publication published in 2011, suggesting a research are being in UK autism research activity databases to collate information on UK remarkable (283%) increase in research grown addressed research activity compare to others peer-reviewed research published in activity across the globe. 2001 and 2011. Articles were classified Autism research according to research area (see p.18- This increase mirrors the findings across the 19). This analysis allowed us to address of the IACC’s Research Publications globe has seen the following four questions: Analysis Report8, which also showed rapid growth between 2001 that the growth in autism publication 1. How much has UK autism and 2011. rates far outpaces the research research grown? literature in comparable areas, such Although 2. What areas of research are Leading & as child psychiatry and developmental the UK is a being addressed? Lagging... psychology. This huge surge in the strong leader 3. Are there any patterns of change in in research field is most likely due to the dramatic UK autism research activity? output on increase in measured prevalence and Biology, Brain 4. How does the pattern of UK the increased public awareness and and Cognition, research activity compare to such Research on Biology, Brain and Cognition maintains the appreciation of individuals with autism it falls behind activity in other parts of the world, other parts largest portion of publications and is the only area to see any and the challenges they face.22 proportional growth in UK output between 2001 and 2011. particularly the US? of the world, particularly How much has UK the US, in increase in UK publications 6,190 English-language articles were autism research grown? the area of over the 10-year period, located from 12 electronic databases Treatments and increasing from 90 publications UK autism research saw a 107% rise in using a selection of autism-related Interventions. in 2001 to 186 in 2011. publications over the 10-year period, search terms. Of the autism articles increasing from 90 publications in 2001 included in the analysis (see Appendix to 186 in 2011. Figure 3 shows how research per million residents in 2001

Fig 3. Autism publications around the world in 2001 this growth in autism publications and 2.9 articles in 2011, reflecting 19 2001 and 2011. Figures represent % growth. 2011 compares to other parts of the world. a 92% increase. The US published 267% There has been strong growth in fewer articles than the UK in 2001 autism publication output in the US, (0.9 articles per million residents). Europe and especially in Asia. But as But this rate rose considerably to 3.1 the figure clearly shows, the rate of articles per million residents in 2011, growth in autism publications in the reflecting a 232% increase.20 While the 380% UK has not kept pace with other parts 2011 rates for the UK and the US are of the world. similar, the growth in volume of autism 719% publications for the UK is lagging

Number of Publications 107% When rates for the UK and the US behind the US. are adjusted for population size, the pattern remains the same. The Despite the very strong history and UK published 1.5 articles on autism achievements of UK autism research, 24 25 This pattern Fig 5. Autism Publications in 2011: UK vs. US UK is despite US widespread calls for more translational research – research into treatments and

interventions, % of total autism publications services and Diagnosis Biology Causes Treatments Services Societal societal issues – in the report on the state of UK autism research US. A breakdown of this category field published 10 years ago.1 revealed that, while the UK is ahead of the curve in terms of technology- How does the pattern of UK based interventions and supports the publications analysis shows that Biology, Brain and Cognition is a research activity compare to (representing 40% of all Treatment the growth in autism research output strong component of such research, such activity in the US? and Interventions publications in 2011 over the past decade is substantially encompassing 33% of all autism Figure 5 shows the similarities and compared to 13% in the US), the UK higher in Europe, Asia and the US. research in 2001 and more than half of differences in the pattern of autism produced no publications in other This remains the case even when all such research (53%) in 2011. When research output between the UK and key areas, including Complementary, productivity is adjusted for population broken down into its subcategories, the US in 2011. Research focused on Dietary and Alternative, Medical/ size, with the UK being overtaken by Cognition research had the greatest Biology, Brain and Cognition accounts Pharmacological, and Occupational, the US. This finding echoes that of number and proportion of publications, for the largest portion of publications Physical and Sensory-based treatments. a recent report on the UK’s research reflecting the UK’s strength and in both the UK and the US. base, which suggested that other leadership in this area (see Key Key findings countries, especially the US, are Dates, p. 14-17), while the fields of There are, however, two notable outpacing the UK in terms of overall Computational and Immunological/ differences. While research into Biology, • Autism research across the globe research output.21 Metabolic research had the smallest Brain and Cognition is a strong area of has seen rapid growth between number and proportion of publications. research for both countries, it is the 2001 and 2011. What areas of research UK that leads the way in this research • UK autism research has increased are being addressed? Are there any patterns of change area: 53% of the UK’s output is in two-fold during this 10-year period Figure 4 shows the trends in areas in UK autism research activity? this area compared to 44% in the US. but the rate of growth of autism research in the US outpaces of UK autism research in 2001 and Research on Biology, Brain and This pattern remains the same if we that of the UK. 2011. At both time points, work on Cognition also benefits from a healthy compare the UK and other parts of the amount of world. This pattern is no doubt due • Research on Biology, Brain and growth over to the UK’s strong tradition in Cognition maintains the largest Fig 4. UK Autism publications 2001 / 2011 2001 portion of publications and is the 2011 the 10-year studying the biological, neural and period. In cognitive underpinnings that help only area to see any proportional fact, it is the explain autistic features (see Key growth in UK output between only research Dates, p.14-17). 2001 and 2011. area to have • Although the UK is a world leader witnessed a The UK published proportionately fewer in research output on Biology, proportional research articles on Treatments and Brain and Cognition, it falls behind increase in Interventions than other parts of the the US and other parts of the publication world, with this research area making world in the area of Treatments % of total autism publications output during up 11% of all UK autism research and Interventions. this period. output in 2011 compared to a marked 23% of all research published in the Diagnosis Biology Causes Treatments Services Societal 26 27 Views from the UK autism community

We consulted four broad stakeholder questions, which were derived from the What are What are peoples’ What are peoples’ groups who have a major interest in UK 6 key research areas on p.18-19, and peoples’ views and perspectives experiences of autism research, including (1) autistic their priorities for future research. priorities for on current UK engaging with people, (2) parents of autistic children, future research autism research researchers (3) people who work with autistic Respondents were asked to rate children and adults (educators, clinicians) the relative importance of the 13 and (4) researchers (academics, funders). questions on a 5-point scale from This consultation sought to answer the ‘not-so-important’ (score of 1) to ‘very 1,600 following questions: important’ (score of 5). Overall, there was broad agreement across all four people responded to an online 1. What are peoples’ priorities for survey designed specifically stakeholder groups that all 13 research for the project. future research? questions were of value, each obtaining 2. What are peoples’ views and a rating of at least ‘moderately people spoke to perspectives on current UK us in-depth, either important’ (see below). face-to-face or on autism research? the telephone. 3. What are peoples’ experiences of When asked to indicate which three engaging with researchers? Two-thirds of the 13 questions were the most of all important for research, there was stakeholders To address fully these questions, our remarkable convergence of views are either consultation took two forms. The first was between the groups of respondents. dissatisfied There is a high degree of consensus amongst the autism community a large-scale online survey completed by or very that future priorities for autism research should lie in the areas of dissatisfied with the pattern 1,633 people. The second was a series of public services, promoting the life chances of autistic people and Questions Mean of current funding. how autistic people think and learn. focus groups and one-to-one interviews rating 1. How can we better recognise the signs 4.2 involving 74 people. Full details of the and symptoms of autism? I want to know how society We have to involve schools, parents, methods are available in Appendix D. 2. Are there different types of autism? 3.7 is going to help them live community partners right from the start, in as independently as they helping to define and shape the research 3. How common is autism? 3.4 possibly can. agenda. They have to be a part of that. The survey, focus groups and interviews 4. How do autistic people think and learn? 4.5 Mother of twin girls with Autism researcher all followed the same structure. They 5. How are autistic people's brains different 4.0 autism were devised in such a way as to allow from the brains of non-autistic people? 6. To what extent is autism caused by 3.5 participants the opportunity (1) to voice environmental factors? their views and perspectives on future 7. To what extent is autism caused by 3.6 Figure 6 overleaf shows the three the life skills of autistic people; (ii) priorities for autism research, (2) to genetic factors? questions rated as most important identifying how public services can 8. What are the best ways to treat the core 4.2 by each stakeholder group, including best meet the needs of autistic people; reflect on the current state of funding symptoms of autism? for UK autism research, and (3) to 9. How can public services best meet the 4.6 the percentage of each group who (iii) understanding how autistic consider their experiences of engaging needs of autistic people? placed this question within their top people think and learn; and (iv) future 10. What is the place of autistic people in 4.0 3 (total percentage for each group can outcomes for autistic adults. with the autism/research community. society today? 11. What are the best ways to improve the 4.6 therefore exceed 100%). What are peoples’ priorities life skills of autistic people? In focus groups and interviews, 12. What does the future hold for autistic 4.4 Autistic people, family members, people talked about the urgent need for future research? adults? In the survey, respondents were asked 13. Why do autistic people appear to be 4.0 practitioners and researchers all for research on effective services for more at risk from some medical conditions prioritised research into (i) improving autistic people throughout their lives. to rate the relative importance of 13 than non-autistic people? 28 29 Figure 6. Views of survey respondents Autistic Adults (n=125) Family Members (n=827) Practitioners (n=427) Researchers (n=120) If I could have just one thing... 1. How can public 1. What are the best 1. What are the best 1. What are the best Survey respondents were also asked to provide Family members, practitioners and academics services best meet ways to improve the ways to improve the ways to improve the details on (1) the one topic of research that also prioritised treatments and interventions the needs of autistic life skills of autistic life skills of autistic life skills of autistic they would like to be researched in the coming for autistic children, young people and adults, people? (61%) people? (61%) people? (48%) people? (66%) decade (total of 1,238 responses) and (2) although particular treatments were any questions that were not covered by the rarely specified. 2. What are the best 2. How can public 2. How do autistic 2. How do autistic 13 research questions but that they thought ways to improve the services best meet people think and people think and should be investigated by researchers (total of “Innovative treatments to help adults/ life skills of autistic the needs of autistic learn? (48%) learn? (52%) 618 responses). The pattern of responses for young people with Asperger syndrome – people? (43%) people? (43%) these questions was very similar. this area is really lacking.” Early career autism researcher 3. What does the future 3. How do autistic 3. How can public 3. How can public Many autistic people, family members, hold for autistic people think and services best meet the services best meet academics and practitioners called for “We need application of psychological adults? (39%) learn? (35%) needs of autistic the needs of autistic more research into co-occurring conditions, research to treatment and education.” especially sensory sensitivities or overload, Senior autism researcher people? (37%) people? (51%) anxiety and depression. Family members also highlighted the need to understand the causes All stakeholder groups called for research of gastrointestinal problems in autism. into ways that ‘neurotypical society’ might “We need to know how to work them so we are able to better change to better accommodate autistic with the services to make sure understand and support them.” “If I had to choose, it would be how people rather than research targeted towards everyone has a chance of Mother of a preschooler to help autistic people deal with the identifying ‘cures’ or ‘prevention’ of autism. having a better life.” with autism co- occurring symptoms of other There was also considerable frustration 28-year-old autistic woman conditions, particularly anxiety / expressed by autistic people and by parents panic and depression.” about the way that autism was sometimes “I want to understand more about Early career autism researcher portrayed in the media and the need for They also discussed the importance how my child sees the world so greater and more accurate awareness of of developing effective ways to teach I can better understand There were general calls for research on autism amongst the general population, life skills to individuals with autism, his response to it.” services particularly from autistic adults but especially in public services. promoting independence in adulthood. Mother of young person also from practitioners and academics, with with autism many respondents expressing a general “I would like to see work on how society dissatisfaction with the services currently can adapt to incorporate autistic people, “Research needs to be carried available to them. rather than autistics having to change out and put into ways to teach There were, however, some clear to live in a neurotypically-driven world” life skills and social rules to differences between the stakeholder Parents and autistic people specified a need Young adult with autism create more independence groups when ranking their priorities. for greater support for individuals and families for adulthood.” Of note, autistic people gave greater following diagnosis, a finding that echoes “The need for social attitudes to change with another recent consultation with regards to autism so that people Sister of an autistic person priority to recognition of the signs with stakeholders.23 diagnosed live stable, happy and symptoms of autism than the and productive lives.” “We need to understand the most other three groups. Also, while “It would be helpful to know how services Young adult with autism effective ways to educate autistic family members, practitioners and and support could be improved for children and provide life skills researchers all considered research adults, i.e., actually have some!” Autistic woman whilst respecting them into interventions for the core Key topics raised by as individuals.” symptoms of autism a priority, this “We need to understand the impact on stakeholders Mother of child with autism was reported to be a low priority for families supporting a child with autism autistic people. and how they can be further supported. • co-occurring conditions All four groups of stakeholders also An educated and empowered parent • services and treatments emphasised the need to understand Autistic people also ranked research actually reduces the need (and then cost) • post-diagnostic support how autistic people think, learn and into the place of autistic individuals on public services as they are less likely to need regular ongoing outside help.” • neurotypical/societal attitudes interpret the world around them. in society as a crucial area Mother of adolescent with autism • dissatisfaction with for research. education provision “We must try to understand “One of the biggest issues is that you get • sex differences the diagnosis and as a parent, you are how the autistic person thinks/ • lifespan issues processes the world around just left to deal with it.” Parent of young person with autism 30 We defined 3 different levels of community engagement: What are peoples’ views and between researchers and the perspectives on current UK communities they study. 1. Public dissemination: which could autism research? include newsletters summarising research In the second part of the consultation, In the UK, this need for partnership in findings, online blogs or public events. participants were presented with the the research process is recognised to summary of UK research funding (see varying degrees by government funding 2. Dialogue: which Figure 1, p.23). In the context of agencies including the Research might comprise direct participants’ priorities, it is not Councils and the National Institute communication or 3. Partnership: which includes joint working of Health Research (NIHR). Research surprising that, when asked how consultation between between researchers and participants, family satisfied they were with the current Councils UK (RCUK) is committed researchers and research participants often as members and practitioners, where research is funding pattern for UK autism to funding research that makes a part of research being conducted. carried out ‘with’ or ‘by’ community members research, the four stakeholder groups significant impact on society. RCUK rather than ‘to’, ‘about’ or ‘for’ them.25 reported being dissatisfied. states that “working in partnership Researchers were the most satisfied of generates new ideas, policies, and the four and autistic adults the least. insights into stakeholders’ needs, this view. All groups of respondents “Some of the researchers have Autistic adults, family members and but also leads to an improved agreed, however, that active research been informative and collaborative. practitioners also felt that this pattern understanding of the research and partnership was a rare occurrence. Others have no interest in 24 did “not really” map on to their own skills needed for particular sectors.” what practitioners need or priorities, while academics felt that it Deliberate expansion of public In terms of satisfaction with the have to share.” “somewhat” did. participation has also been seen engagement they had experienced, Experienced autism practitioner across the National Health Service the responses varied greatly across In focus groups and interviews, many (www.invo.org.uk). all four stakeholder groups, with The second theme was lack of people suggested not that we should researchers most commonly reporting reciprocity. Non-researchers commonly invest less in certain research areas To date, in the autism field there ‘dissatisfaction’ with the level of spoke of the frustration caused by but that research funding should be is little information as to how engagement, and non-researchers most researchers who make little or no more evenly distributed amongst the successful researchers are at commonly endorsing ‘neither satisfied contact following their participation. primary research areas – that is, that such forms of engagement and, nor dissatisfied’. autism research needed to be much furthermore, how satisfied non- “I don’t think many researchers more “balanced” than it is currently. researchers (autistic people, family When open-ended responses were feel they can talk to autistic members and practitioners) are analysed from the survey, focus groups people as if they matter; they’re “Philanthropic groups in the US with the attempts that researchers and interviews, three main themes too busy studying them like have been able to change the make at such engagement activities. emerged, which were common to specimens or looking for a ‘cure’.” conversation around autism; to This consultation offered a unique all non-researchers (autistic people, Early career autism practitioner help validate the advice parents opportunity to address this question. family members and practitioners). can access, to understand how The first of these was attitudes. All “Researchers are more keen on best to work with their kids, to We asked both researchers and non- three stakeholder groups stressed the collecting data, but not providing help their children fulfill their researchers about how frequently they importance of researcher attitudes results.” Autistic woman potential. My sense is that experienced such engagement activities to their level of satisfaction with we’ve not done as well as that.” (see definitions opposite) and how engagement and related largely “I would like more details of the Charitable funder satisfied they were with positive experiences of interacting results of research, particularly these experiences. with researchers. when I have given time and effort to helping with it.” Mother of child What are peoples’ experiences of While the majority of researchers “Those [researchers] I have come with autism engaging with researchers? said that they ‘frequently’ or ‘very into contact with have had a An increasing priority for research frequently’ engaged in public genuine interest and concern for “It feels like researchers are funding agencies across science – dissemination and dialogue only a people with autism.” Mother of working in their own world, with both public and philanthropic – is minority of autistic people, family young person with autism little direct engagement with us, that research should be a partnership members and practitioners shared

32 33 isolated from the practical “Most of the research centres on the most vocal individuals have a into setting the goals of research and issues people face.” the high functioning, Asperger’s completely different experience/ should be involved directly during the Mother of preschooler with autism type of autism. It’s not agenda than most of the development of new research projects. relevant to my son’s life.” vulnerable people we engage.” Many respondents also spoke of Mother of adolescent with autism Senior autism researcher There is a need for researchers to be barriers to engagement, the third made aware of their relative lack of theme, which included difficulties (i) “It is important for research “Some of the challenges people success in engagement with the broader accessing research findings, particularly to have practical outcomes. with autism may face makes the autism community. There is a role for in accessible formats for lay audiences, Researchers need to be closer to interactions quite difficult – trouble funding agencies to work jointly with (ii) finding the time for engagement in those affected by [autism].” taking on board another person’s autistic people and their families to research in their otherwise already Older autistic man point of view, commenting in a help determine the best mechanisms very busy lives, especially the sensitive way that does not cause of engagement – be it dissemination, demands of caring for an autistic child, Academics spoke of similar issues, offense, etc. I would favour more dialogue or partnership – especially and (iii) identifying research relevant although from the ‘other side of partnership, but very different for those individuals with autism who to their lives. the fence’. goals and methods of interaction might not be able to communicate make this a formidable challenge.” their views and perspectives so easily. “As an autism professional, I Many academics mentioned that the Senior autism researcher The field could profitably learn from have to seek out any information autism community had been receptive participatory methods, which are well regarding research myself. Very and supportive in their attempt to Some researchers also expressed developed in other fields,26-28 but rarely rarely is it in a format that is engage them in research. concerns regarding the attitudes and applied to the study of autism. We easy to comprehend for a non- practices regarding engagement within need to work towards moving away academic/researcher.” They also, however, identified several academia. For example: from traditional ‘us’ vs. ‘them’ models Experienced autism practitioner barriers to engagement, particularly the of research to collaborative ways of lack of consensus within the autism “I feel that [engagement] can be working together. “There is just so little research community on various issues and the tokenistic, i.e., asking the same that I’m aware of. Once [your child communication challenges faced by panel of people with autism to Key findings is] diagnosed, you’re left to get on autistic people. contribute to policy, practice and • There is a high degree of consensus with it unless you have the time decision-making, almost to ‘tick amongst different parts of the and inclination to get involved in “The experiences of individuals the box’ to say that people with autism community (autistic people, support groups.” with autism and their families autism had been involved.” family members, practitioners and Mother of young adult with autism are many and varied. Sometimes Early career autism researcher researchers) that future priorities for autism research should lie in the The survey findings highlight a disparity areas of public services, promoting in how well academics feel that they are the life chances of autistic people and engaging the autism community and the how autistic people think and learn. experiences of the community itself. • Two-thirds of all stakeholders are either dissatisfied or very dissatisfied The majority of autistic people, family with the pattern of current funding – members and practitioners had not it does not match up to their experienced dissemination or dialogue stated priorities. frequently. More active research • Academics perceive themselves to partnership was rated as infrequent by be engaged with the broader autism researchers and non-researchers alike. community but this is not shared by other stakeholders, most notably Encouragingly, though, when autistic people and their families. researchers spoke of ways that • Autistic people see the challenges as engagement with the autism community societal and attitudinal ones and not could be improved, they often said that about ‘curing autism’. they would like to see autistic people and their families given more input 34 35 Conclusion

There has been a substantial increase It is our belief that this knowledge therefore, important to be selective in autism research publications and should be of immediate practical help in this and other areas in which new funding during the past decade, both to all those seeking to ensure that funds are directed and for which in the UK and abroad. But while there future autism research provides the efforts are made to raise have been some significant advances, most benefit for the most people. additional support. we still have not come close to a full understanding of autism. Research In addition to this general ambition, As we have documented here, the into effective ways of responding to we conclude by highlighting three main UK has a strong history and tradition the needs of autistic people and their recommendations, which emanate as a world leader in autism research, families is less advanced still. This from our findings. particularly in the area of cognition. means that the promise of research, There are very good reasons not to although rightly championed by First Recommendation: undermine these areas of comparative many, is far from fulfilled. Investment in new areas advantage. It is important to value For the UK to maintain its position of autism research established expertise, to recognise as one of the world’s leaders The purpose of this Report has been Many of the recent UK policy and the importance of one generation to document the nature of autism practice initiatives on autism are a passing its knowledge to another and in autism research, it needs research currently funded and direct response to the recognition to acknowledge that it is impossible greater investment in under- conducted in the UK and to map that that autism is both common and has for one country to possess centres researched areas and in under- on to the priorities of autistic people a substantial impact on individuals of excellence in all areas. High start- served populations, new strategic 29 and the broader autism community. and society. The amount of autism up costs in new areas and lack of oversight and coordination and the research activity – both guarantees of return can be prohibitive, involvement of autistic people and in terms of funding and especially in small countries like the publications – has also UK. We thus believe that these areas the broader autism community in grown significantly. of research should continue to decisions about research. receive substantial support. Our analysis suggests, however, that UK funding There is an urgent need to invest in This is partly because such work is and productivity is currently under-served areas, especially significantly under-funded at present. not keeping pace with in work that translates basic scientific It is also because as new interventions developments in some knowledge into practice for those are developed other parts of the world, with autism. The UK elsewhere, we will particularly the US. We autism community need evidence recommend that the demands greater about whether UK thus continues to emphasis on research such policies or accelerate the level of targeting how autistic services will work investment into autism people think and learn, here in the UK in similar research. We recognise, how we can promote the ways to the places in which of course, that at a time life skills and independence of people they have been developed. Too often of economic difficulty for with autism and how we can develop it is presumed that services can be the whole country this and identify effective public services delivered in the same way in different will not be easy. It is, for autistic people and their families. cultural, institutional, social and 36 37 through the development of new cross- community relationships are also disciplinary partnerships. We suggest necessary for translation of research that researchers should take on directly into practice. the responsibility of ‘translation’, such as by applying their own expertise or Developing these research-community the expertise of their teams directly partnerships takes time, effort and to other areas of concern. Examples often funding. Grant-giving bodies could include and government efforts to develop agencies cross- disciplinary should actively research moving encourage expertise from partnerships that psychological science are genuinely into education, from participatory and epidemiology into not just tokenistic, where service delivery autistic people and other key and design, from stakeholders are ‘co-producers’ of the biomedical research into socio-cultural, research. Building such institutional legal and ethical investigations. mechanisms of engagement requires sustained effort. But researchers can Third Recommendation: act now to develop their research Listening, engaging and their aspirations differently. and involving Researchers should listen to the Most important of all, though, is views and perspectives of the autism an ethic of engagement. There is, community to appreciate what it is like unfortunately, a disconnect at present to be autistic, to care for someone who between the UK’s investment in autism is autistic, or to work with someone research and the life-chances for who is autistic. And the autism political settings and thus UK-specific need a body to identify and coordinate autistic people and their families. community should work towards research is not required. We believe UK autism research, helping to We need to reduce this gap. gaining a better understanding of this is a mistake. connect experts in established areas research and the challenges involved. of excellence with researchers in One clear way of doing so is developing Even in straitened times, therefore, new and less-well supported areas more widespread mechanisms of We – researchers and funders, the we recommend that funds should of concern. Such a body should have engagement between researchers autism community and the public be allocated to ‘build capacity’ in responsibility for strategic coordination and the autism community. – need to work together towards under-researched areas within the UK and planning of UK autism research advancing autism research in the and also to fund research in areas of funding and must include the views As this Report shows, autistic people, UK. We need to invest more in those significant importance and interest and perspectives of autistic people their family members and practitioners areas that are under-resourced and to the broader autism community, and the wider autism community. Its are rarely actively engaged in the in populations that are under-served, especially autistic people. Care should recommendations should inform both research process – in deciding how an we need to join together in innovative be taken to ensure that these areas governmental and non-governmental issue is researched, how it becomes new partnerships, and we must seek are not squeezed out in an funding agencies and encourage funded, who undertakes the research to ensure that everyone with a stake ever-more competitive research researchers and non-researchers and so on. There needs to be greater in the research process is given an funding environment. to reach out to each other across involvement of the autism community opportunity to make their voice heard. established disciplinary divides. Second Recommendation: The both in priority-setting exercises in specific areas and in research more The best priorities are made through need for strategic partnerships A more immediate way of developing broadly to ensure that resources are involvement of all these stakeholders. To ensure that the investment in under-researched areas would be to targeting the critical needs of autistic autism research is directed towards draw on best practice and expertise people and their families. Strong areas that are the most needed, we from already well-established areas The best priorities are made together.

38 39 Appendix A: Identifying autism- Appendix B: Identifying autism- Online Journal Databases include projects investigating metabolic related funding awards related research publications measures, such as the levels of specific • ISI Web of Science (WoS) chemicals, hormones, or proteins in the blood that could be used as biomarkers • Medline of the condition. The online research funding database Europe 12 online academic databases were searched • Applied Social Sciences Index and Abstracts for articles containing any of the search terms PubMed Central and the organisational • British Humanities Index 3) Intermediate phenotypes/Subgroups: listed in Appendix A in their title, abstract or websites/annual reports of 20 UK research • Education Resource Information Included in this subcategory are projects key words. The search was limited to articles funding bodies were searched for funding Center (ERIC) aimed at identifying distinct subgroups of awards containing any of a selection of published in 2001 and 2011. The databases • International Bibliography of the people with autism, or those that share autism-related search terms. The search was searched are listed to the right. Social Sciences common morphological, physiological, or limited to awards made between 2007 and behavioural features (i.e., the broader/ Articles with identical titles and primary • PsycInfo 2011. The search terms entered and funding extended autism phenotype). Projects in authors were excluded. Articles were also • Science Direct bodies surveyed are listed below. this subcategory use a variety of methods excluded if their ‘type of article’ was listed • Social Services Abstracts to identify and distinguish these groups for as anything other than Article, Case Report, • Sociological Abstracts This systematic search was followed up with diagnostic purposes. e-mail requests to the identified funding Case Study, Clinical Trial, Comparative Study, • The Cochrane Collaboration Controlled Clinical Trial, Meta-Analysis, bodies for any further information on • The Campbell Collaboration 4) Symptomatology: Projects in this Randomised Controlled Trial, Research autism-related funding awards not available subcategory focus on the defining symptoms Support, or Review. in the public domain. of autism, as defined by standard diagnostic criteria (e.g., DSM, ICD). These projects seek These steps ensured that only those articles Funding awards made in support of primary to define the broad range and severity of containing primary research were included research involving the collection and autism symptoms, including both biological in the review. analysis of new data, or new analysis of and behavioural characteristics. Among existing data, were included in the review. Appendix C: Categorising the these studies are some that examine how Remaining articles were included in the Each award was then categorised according children and adults with autism vary in their review, and were systematically categorised primary topic of autism-related to primary topic (see Appendix C), target age development of social communication and according to the following characteristics: funding awards and and target demographic. language. Other projects seek to understand Primary author name, Year published, Article research publications. how neurocognitive impairments can Search Terms title, Primary topic (see Appendix C), Target contribute to symptom development and age, Target demographic, and Country of phenotypic variability in those with an autism • ASC • Autism primary author. The primary topic of all funding awards diagnosis. N.B. Some ambiguity is to be and articles identified were systematically • ASD • Autistic expected between this subcategory and 6) Of the autism articles included in the assigned to one of 6 research areas using • Asperger • PDD-NOS Cognitive studies; in such cases articles which analysis (n=2,649), 548 were published in a protocol adapted from the 2010 IACC ASD • Asperger’s • PDD NOS descriptively investigate the phenotypic/ 2001 and 2,101 were published in 2011. Research Portfolio Analysis Report.7,8 The 6 • Autis* • PDDNOS phenomenological manifestation of the core research categories were comprised of 35 symptoms of autism should be coded here. research topics. The protocol is listed Funding Bodies below in full. 12 online academic databases 5) Prevalence/Epidemiology of autism: searched for articles containing Projects that investigate the prevalence of • Arts & Humanities Research Council autism-related search terms in i. Diagnosis, Symptoms and Behaviour - 2001 and 2011 (n=6190) autism in a given population. • Autistica Projects that aim to recognise the symptoms • Baily-Thomas Charitable Fund and signs of autism, define the typical ii. Biology, Brain and Cognition - Projects 2046 duplicates / secondary characteristics that combine to form an • Biotech & Biological Sciences Research that aim to understand the biological and research articles removed autism spectrum diagnosis and explore Council automatically using EndNote cognitive underpinnings that help explain variation in the symptoms and severity • British Academy (n=4144) autism symptoms and identify biological associated with autism. • Chief Scientist Office signatures that differentiate between • Department for Education Is the article primarily about subgroups of people with autism. ASD, Asperger Syndrome, PDD- 1) Diagnostic and screening tools: This • Department of Health/NIHR NOS and / or Rett Syndrome? subcategory includes projects that are 6) Cognitive studies: These are studies of • Economic & Social Research Council developing new autism diagnostic and YES psychological and mental processes, including • Engineering & Physical Sciences Research screening tests for clinical use, as well as memory, producing and understanding Council Does the article describe those establishing the usefulness of new or a) Collection and analysis language, solving problems, and making • Inge-Wakehurst Trust NO revised assessments for autism symptoms. It of new data? decisions. Projects in this subcategory consist also encompasses projects aimed at adapting • Leverhulme Trust of those that investigate theory of mind, AND / OR clinical assessments into other languages for • Medical Research Council social cognition and empathy, understanding b) New analysis of use in multi-lingual community settings. • Natural Environment Research Council existing data? facial expressions of emotion (and how and • Nuffield Foundation why this is impaired in autism), IQ, and 2) Early signs and biomarkers: Projects which • Research Autism recall and memory. Projects investigating NO YES use a variety of methods to search for signs academic achievement are not included in • Royal Society of autism in very young children (generally this category. N.B. Some ambiguity is to be • Science & Technology Facilities Council Exclude from Include in under age 3) that could be used for diagnosis, expected between this subcategory and 4) • Waterloo Foundation analysis (n=1495) analysis (n=2649) such as eye-tracking, physiological measures, Symptomology; in such cases articles which • Wellcome Trust and autism- specific behavioural patterns are investigate the explanatory mechanisms (i.e., included in this subcategory. More examples i ii ‘why’ and ‘how’) which underlie cognitive 11) Molecular pathways: This subcategory these projects try to make the connection and/or sibling-mediated interventions, and processes should be coded here. includes studies on specific molecules between certain genes with a known or social skills training. and proteins (other than the immune and suspected link to autism and the observable 7) Computational science: Computational metabolic systems) that may be involved characteristic, or phenotype, that they 22) Complementary, dietary, and alternative: methods and modelling allow for the in the development of autism and related purportedly cause. This subcategory includes research on synthesis and study of large and complex sets genetic disorders (e.g., Fragile X syndrome acupressure, acupuncture, antioxidants, of data. Some projects in this subcategory and Rett syndrome). Many of these projects 16) Model systems: Animal models mimicking cholesterol supplementation, glutathione collect extensive experimental biological use cellular models to explore the biological behaviours of autism and those that are being metabolism, nutritional supplements, and behavioural data and use powerful effects of specific candidate genes and used to develop or test new drug treatments, vitamins, and minerals, probiotics, and computing techniques to reveal new insights. to identify common molecular pathways, as well as cell lines used to discover new special diets (e.g., gluten-free, casein-free). Other aspects of computer science are also including alterations in synaptic functioning drug targets or to screen potential drug included, such as developing statistical and intracellular signalling cascades. N.B. candidates, are included in this subcategory. 23) Educational: Nearly all research modelling techniques to better understand Some ambiguity is to be expected between in classroom settings falls under this the biology of autism. this subcategory and 20) Genetic Risk iii. Causes - Projects that aim to identify subcategory, including studies of academic Factors; in such cases articles which explicitly genetic and environmental risk factors that achievement by autistic people, curricula, 8) Co-occurring conditions: Research on investigate the synaptic/neural effects of may confer greater susceptibility to the educational best practices, inclusive conditions that often co-occur with autism specific candidate genes should be development of autism. education programs, math and reading is included here, such as seizures/epilepsy, coded here. training, positive behavioural supports, sleep disorders, gastrointestinal dysfunction, 17) Environment: This subcategory includes special education programs, TEACCH wandering/elopement behaviour, attention 12) Neural systems: Studies in this a number of projects investigating potential (Treatment and Education of Autistic and deficit hyperactivity disorder (ADHD), subcategory explore the structure and activity environmental risk factors for autism. Related Communication- Handicapped familial autoimmune disorders, oppositional of the brain and underlying neural systems Example projects include studies of the Children), and the “Social Stories” approach. defiant disorder, conduct disorder, involved in autism, including functional effects of the microbiome, environmental Studies aiming to investigate and/or improve schizophrenia, aberrant eating behaviour, connections between brain regions. Many contaminants and toxins, maternal dietary teacher efficacy should not be included in this aberrant motor behaviours, self-injurious projects seek to identify the precise neural factors, medications taken during pregnancy subcategory [see 30) Practitioner Training]. behaviour, challenging behaviour, emotional networks underlying communication and or to induce labour, assistive reproductive and behavioural difficulties, CNS/cranial language processing, social interactions, and treatments, child and maternal response to 24) Medical/Pharmacologic: This anomalies, diabetes mellitus type 1, muscular behavioural issues. These studies frequently immune challenge, and registries subcategory includes research on drugs dystrophy, depression, anxiety and other employ imaging techniques, such as where many of these factors can be (e.g., antidepressants, anticonvulsants, mental health problems. functional magnetic resonance imaging (fMRI) tracked simultaneously. antipsychotics, anxiolytics, melatonin, and and diffusion tensor imaging (DTI), and other stimulants) to treat autism and its co- 9) Developmental trajectory: Projects in physiological measures of brain activity, such 18) Epigenetics: Epigenetics is the study of occurring conditions, as well as medical this subcategory often include longitudinal as electroencephalography (EEG). heritable changes in gene function that occur therapies such as transcranial magnetic studies following various aspects of biological without a change in the DNA sequence (such stimulation (TMS). and behavioural development in the same 13) Neuropathology: These projects typically as methylation of DNA). Environmental factors individuals over time. Examples include brain include post-mortem examination of brain can cause these changes in gene expression, 25) Occupational, physical, and sensory- growth, face processing, change in neural tissue from autism individuals. Many of the and projects in this subcategory seek to based: Therapies in this subcategory connectivity over time, and development studies in this subcategory explore how the identify some of the environmental influences encompass art therapy, motor training of communication skills and language architecture of the brain may be altered that may lead to these epigenetic changes. (including fine motor skills such as processing. These studies often compare in individuals with autism or how gene handwriting as well as gross motor training children with autism to typically developing expression varies in different areas of 19) Gene-Environment: These studies search involving balance and posture), music children or to their unaffected siblings. Data the brain. for combinations of environmental risk factors therapy, occupational therapy, pet (animal) collection MUST include longitudinal study and genetic susceptibility that increase the therapy, physical activity plans and exercise involving follow-up of the same participants 14) Sensory and motor function: Projects risk for autism. therapy (bike riding, swimming), physical over time. Neither cross-sectional studies that in this subcategory explore the neural therapy, sensory integration, therapeutic claim to investigate developmental processes underpinnings of motor skills and abilities 20) Genetic risk factors: Projects in this horseback riding, training in self-care nor studies that investigate developmental in children with autism and assess visual, subcategory seek to identify new genes that and daily living skills, and processes retrospectively are included in auditory, perceptual, and other sensory are implicated in increased risk for ASD or to vocational rehabilitation. this subcategory. processes in the brain. These include better understand genetic risk factors that behavioural/experimental studies on were previously identified. 26) Technology-based interventions and 10) Immune/Metabolic pathways: These sensation, perception and motor skills as supports: Augmentative and alternative projects focus on understanding the biological well as brain imaging studies. iv. Treatments and Interventions - Projects communication (AAC), computer mechanisms of metabolism and the immune that aim to develop treatments and applications and software, picture exchange system that may be altered in autism, 15) Subgroups/Biosignatures: Because there interventions for autism and evaluate their communication system (PECS), social robots, typically in cells and animal models. This is so much heterogeneity among individuals efficacy and safety. teleconferencing, video modelling and virtual largely includes studies on inflammation and with autism, research to understand how reality (including virtual and 3D environments inflammatory molecules (i.e., cytokines), as certain subgroups of individuals that 21) Behavioural and Developmental: Projects to mimic social situations), and wearable well as on the role of mitochondria, energy share certain behavioural or biological in this subcategory involve a wide array of sensors are all examples of the types of metabolism, and oxidative stress. Also characteristics could help understand some behavioural research and training methods, technology in the projects in this subcategory. included in this group are projects seeking of the underlying biology in autism. This can including applied behaviour analysis (ABA), to identify specific immune and metabolic be done by searching for certain biological cognitive-behavioural therapy, discrete trial v. Services - Projects that aim to identify, triggers in early prenatal and post-natal life, factors (“signatures”), such as hormone training, Early Start Denver Model, imitation develop and evaluate services and supports such as maternal infection, maternal auto- levels or structural abnormalities in the brain, training, joint attention training, Lovaas for people with autism and their families and antibodies, and toxic exposures. that define a particular subgroup. Many of method, pivotal response training, parent explore issues surrounding accessibility, cost- iii iv effectiveness and ease of transition between and/or political issues surrounding ASD Appendix D: Interviews and Stakeholder Group Number of Type of services aimed at different age groups. including autism advocacy, disability rights, focus groups with the broader Participants consultation and neurodiversity. N.B. This code should not Autistic Adults 14 Face-to-face 27) Community inclusion programmes: These be used for projects discussing the ethical autism community interview; programmes provide instruction in social, implications and responsibilities specific to Skype; focus group communication, and leisure skills to enable service provision [see codes 27-31]. The programme of interviews and focus individuals with autism to participate in groups was intended to provide insight Family Members 27 Focus group; sports, recreation, and social-integration 35) Biographical/Ethnographical: Projects that face-to-face into the views of the UK’s broader autism interview activities in fully integrated settings and to explore the lived experience of autistic people community, and to inform the design of an build successful relationships with others. and their families/carers using journalistic, Practitioners 20 Focus group; online survey to be disseminated among large face-to-face biographical and/or ethnographical methods. numbers of stakeholders (see Appendix E). 28) Efficacious and cost-effective service Researchers and 13 Focus group; delivery: This subcategory includes Modifications to IACC protocol funders face-to-face Potential participants were contacted via the interview; programs involving web-based curricula Centre for Research in Autism and Education’s telephone and interventions as well as telehealth 1. The ‘Infrastructure and Surveillance’ (CRAE) contacts and the NAS Autism Services interview methodology, all of which could benefit those research area, intended to capture funding Directory. Twenty one consultations were in underserved areas. Studies to improve awards made in support of research conducted involving 74 participants, yielding dental care are also in this subcategory for infrastructure, data tools, biobanks, workforce 26 hours of discussion. The majority of effective service delivery. development etc was excluded from this interviews were carried out either at the review. Institute of Education, London, or a mutually 29) Family well-being and safety: Studies in convenient location in Greater London. Where this subcategory evaluate issues of caregiver 2. The ‘Lifespan Issues’ research area, face-to-face meetings were not possible, Appendix E: Online survey stress and measures of quality of life for intended to capture projects specifically interviews were conducted by telephone/ individuals with autism and their families, targeted at adult diagnosis, symptomology, Skype. Details of the consultations are listed in as well as assess programs to help parents interventions, service needs etc was also the adjacent table. The online survey aimed to elicit both navigate the service system after their child excluded from this review. Each award/ quantitative and qualitative responses receives an autism diagnosis. It also surveys article was instead coded according to its Each consultation proceeded according to from large numbers of the UK’s broader safety issues for those with autism, including ‘Target Age’ in addition to its primary topic a semi-structured discussion guide, though autism community regarding their views wandering and bullying. (see Appendices A, B), to ensure our review participants were encouraged to speak about on autism research. The survey was hosted remained sensitive to these issues. whatever they deemed appropriate. During by SurveyMonkey between December 2012 30) Practitioner training: Projects in this each session participants were presented and February 2013 and attracted 1,633 subcategory seek to increase skill levels in 3. The ‘Diagnosis’ research area was renamed with provisional findings from the review of respondents. The survey’s design and content service providers, including medical providers, ‘Diagnosis, Symptoms & Behaviour’ to better UK autism research funding detailed in the was the result of discussion between the direct support workers, education staff, and reflect the scope of the research topics it report. With some minor audience-appropriate researchers and was informed by the themes public service workers. contains. alterations, each discussion proceeded largely arising in the focus groups and interviews as described below. conducted to that point (see Appendix D). A 31) Services utilisation and access: These 4. The ‘Biology’ research area was renamed link to the online survey was disseminated projects include surveys of service systems ‘Biology, Brain & Cognition’ to better reflect 1. What do you know about autism research among CRAE contacts and partner available in different states/nations, the scope of the research topics it contains. currently going on in the UK? organisations across the UK. evaluations of patterns of medical service use among children with autism, online resources 5. The ‘Prevalence/Epidemiology of autism (5)’ 2. How do you access this information? Though the items presented by the survey for autism services, and specific efforts to topic was added to the ‘Diagnosis, Symptoms 3. What do you think are the current differed slightly between stakeholder groups coordinate services for people with autism. & Behaviour’ research area. priorities? (e.g., family members were also asked to They also evaluate disparities in diagnosis indicate the age and gender of their autistic and service utilisation as well as barriers to 6. The list of conditions covered by the ‘Co- 4. Do you feel these are the right areas to relative), each participant was required access for racial and ethnic minorities. occurring conditions (8)’ topic was expanded focus on? Why/why not? to respond to items about the relative vi. Societal Issues - Projects that examine the to better reflect the current literature on 5. Presentation and discussion of provisional importance of different research questions, place of autistic people in society and explore autism co- morbidity. findings of UK autism research funding their satisfaction with the current profile of the social, ethical, economic and political review. UK autism research, their priorities for future issues relevant to autism and neurodiversity. 7. The ’Model Systems (16)’ topic was research, and their experiences of engaging re-assigned from the ‘Treatments & 6. What are your experiences of engagement with researchers/the autism community. 32) Economics of Autism: Projects that Interventions’ area to ‘Biology, Brain & between autism researchers and the Survey items are available from the authors primarily investigate or discuss the economic Cognition’ to better reflect the nature of the broader autism community? on request. impact of autism on a given economy/group projects captured. N.B. All US funding data of economies. N.B. This code should not be presented in the report reflects this change. Ethical approval for this study was granted by used for projects discussing the provision of the Faculty of Policy and Society’s Research specific services [see codes 27-31]. 8. The ‘Societal Issues’ research category was Ethics Committee at the Institute of Education, added to capture projects that examine the University of London. All participants gave 33) Research Policy: Projects that primarily place of autistic people in society and explore informed consent prior to participation. investigate or discuss political, philosophical, the social, ethical, economic and political methodological, ethical and/or legal issues issues relevant to autism and neurodiversity. specifically surrounding autism research. 9. Some US-specific wording was altered to 34) Social and Ethical Issues: Projects that reflect the UK focus of this study. primarily investigate or discuss moral, ethical v vi Glossary of terms Notes 1. Charman, T., & Clare, P. (2004). Mapping 13. Levy, S. E., Mandell, D. S., & Schultz, R. T. autism research: Identifying UK priorities for (2009). Autism. Lancet, 374, 1627-1638. Advocacy: Efforts made in support of the Online academic journal database: An online the future. London: National Autistic Society. 14. Warren et al. (2011). A systematic review desires, needs, and rights of a particular person database which provides access to summaries 2. Howlin, P., Goode, S., Hutton, J., & Rutter, of early intensive intervention for autism or group of people. of journal articles and other research outputs M. (2004). Adult outcome for children with spectrum disorders. Pediatrics, 127, e1303 published by academic journals (see Appendix autism. Journal of Child Psychology and – 1311. Animal models: The use of genetic techniques to A for a list of online academic journal databases Psychiatry, 45, 212 – 229. 15. Seida et al. (2009). Systematic reviews of re-capitulate the symptoms of a condition in an used in this study). 3. Howlin, P., Moss, P., Savage, S., & Rutter, psychosocial interventions for autism: an animal population for use in research. Animal M. (2013). Social outcomes in mid to later umbrella review. Developmental Medicine models are often used to trial drug treatments Participatory research: The active participation adulthood among individuals diagnosed and Child Neurology, 51, 95 – 104. before they are tested on humans. of the people being studied in the design, with autism and average non-verbal IQ as 16. Office for National Statistics (2013). Statistical conduct and interpretation of research and children. Journal of the American Academy Bulletin. UK Gross Domestic Expenditure Basic research: Research that aims to increase research findings. of Child and Adolescent Psychiatry, 52, 572 on Research and Development, 2011. – 581.e1. Retrieved from: www.ons.gov.uk/ons/ understanding of fundamental principles 4. Bancroft, K., Batten, A., Lambert, S., & dcp171778_302928.pdf. without necessarily providing any immediate Peer review: The process by which anonymous Madders, T. (2012). The way we are: autism 17. UK Clinical Research Collaboration (2012). UK implications for clinical practice. experts in a given field evaluate the quality of in 2012. London, UK: National Autistic Health Research Analysis 2009/10. London: new research, often to determine its suitability Society. Medical Research Council. Broader autism community: Those UK residents for publication. 5. Insel, T., & Daniels, S. A. (2011). Future 18. This figure excludes £50.8 million spent in who are autistic themselves, who care for those directions: Setting priorities to guide the the US on infrastructure for autism research. with autism, or who work with autistic children, Philanthropic funding: Research funding federal research effort. In D. G. Amaral, G. 19. UK population estimates taken from the young people and/or adults. provided by the private or charity sectors, Dawson & D. H. Geschwind (Eds.), Autism 2001 and 2011 UK Censuses. typically comprised of charitable donations or Spectrum Disorders (pp. 1359 – 1366). New 20. US population estimates for 2001 and 2011 Cognition: Any psychological or mental process endowments. York: Oxford University Press. taken from the US Census Bureau. including understanding, awareness, perception, 6. Singh, J., Iles, J., Lazzaroni, L., Hallmayer, 21. Elsevier (2012). International comparative J. (2009). Trends in US autism research reasoning, judgement, etc. Primary research: Activities that involve the performance of the UK research base – 2011. funding. Journal in Autism and A report prepared for the Department of collection and analysis of new data, or the new Developmental Disorders, 39, 788 – 795. Business, Innovation and Skills. Retrieved Cognitive behavioural therapy: A type of talking analysis of existing data. 7. Office of Autism Research Coordination, from: www.bis.gov.uk/assets/biscore/ therapy designed to help a person manage National Institute of Mental Health, on behalf science/docs/i/11-p123-international- their problems by altering the way they think Secondary research: The summary or review of of the Interagency Autism Coordinating comparative-performance-uk-research- and behave through pragmatic, goal-oriented previous primary research. Common examples Committee (IACC). (2012). 2010 IACC Autism base-2011.pdf strategies. of secondary research are literature reviews, Spectrum Disorder Research Portfolio 22. Dawson, G. (2013). Dramatic increase in commentaries, editorials, etc. Analysis Report. Retrieved from www.iacc. autism prevalence parallels explosion Cortical development: The growth and hhs.gov/portfolio-analysis/2010/index.shtml. of research into its biology and causes. maturation of the cerebral cortex – the Skype: Software that allows two or more people 8. Office of Autism Research Coordination Archives of General Psychiatry, 70, 9-10. doi: outermost sheet of neural tissue of the brain. to see and hear each other via the Internet. (OARC), National Institute of Mental Health 10.1001/jamapsychiatry.2013.488. and Thomson Reuters, Inc. on behalf of the 23. Wallace, S., Parr, J., & Hardy, A. (2013). One Interagency Autism Coordinating Committee in a hundred: Putting families at the heart of Focus group: An interview involving more than Socially-assistive technology: Any technology (IACC). (2012). IACC/OARC Autism Spectrum autism research. London, UK: Autistica. one interviewee i.e., an interview which takes which assists people in communicating or Disorder Research Publications Analysis 24. Retrieved from: http://www.rcuk.ac.uk/kei/ place in a group setting rather than one-on-one. learning social skills e.g. various computer Report: The Global Landscape of Autism Engaging/Pages/home.aspx applications and software, Picture Exchange Research. Retrieved from www.iacc.hhs.gov/ 25. INVOLVE Strategy 2012 – 2015: Putting people Government funding: Funding which is provided Communication System (PECS), socially-assistive publications-analysis/july2012/index.shtml first in research. National Institute for Health and administered by government, and is robots, etc. 9. World Health Organisation. (1992). The ICD-10 Research. Retrieved from: http://www. therefore primarily comprised of public funds Classification of Mental and Behavioural invo.org.uk/wp-content/uploads/2012/04/ raised through tax revenues. Stakeholder: Anyone with an interest in autism Disorders: Clinical Descriptions and INVOLVEStrategy2012-15.pdf research, be it personal or professional. Diagnostic Guidelines. Geneva: WHO. 26. Vaughn, L., Wagner, E., & Jacquez, F. (2013). Intellectual disability: A condition characterised 10. American Psychiatric Association. (2013). A review of community-based participatory by concomitant impairments in general mental Translational research: Research conducted with Diagnostic and statistical manual of mental research in child health. MCN, American abilities and adaptive behaviour that first the explicit purpose of translating scientific disorders (5th ed., DSM-5). Washington, DC: Journal of Maternal Child Nursing, 38, 48–53. American Psychiatric Association. 27. Oliver, S. et al. Involving consumers in manifest early during development. knowledge into clinical practice. 11. Pellicano, E. (2013). Sensory symptoms in research and development agenda setting autism: A blooming, buzzing confusion? for the NHS: developing an evidence-based Neurotypical: A label used to describe Child Development Perspectives, DOI: approach. Health Technology Assessment people with no apparent neurological 10.1111/cdep.12031 Monographs, 8, 1-148. disorder or atypicality. 12. Simonoff, E. et al. (2008). Psychiatric 28. Lloyd, K., & White, J. (2011). Democratizing disorders in children with autism spectrum clinical research. Nature, 471, 277-278. disorders: Prevalence, comorbidity, and 29. Knapp, M., Romeo, R., & Beecham, J. (2009). associated factors in a population-derived Economic cost of autism in the UK. Autism, sample. Journal of the American Academy of 13, 317-336. Child and Adolescent Psychiatry, 47, 921-929. vii viii To cite this report, please use: Pellicano, E., Dinsmore, A., & Charman, T. (2013). A future made together: Shaping autism research in the UK. London: Institute of Education.