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Mapping autism text chroma

Mapping autism research
on behalf of the steering group from The National Autistic Society (NAS) and Parents Autism Campaign for Education (PACE) Funded by the Baily Thomas Charitable Foundation Research activity in the UK and the rest of Conclusions: integrating findings from the mapping exercise with other recent reviews Mapping autism research Identifying UK priorities for the future Published by The National Autistic Society 2004 The authors of the report are grateful to the staff of The National Autistic Society (NAS) and of Parents Autism Campaign for Education (PACE) for supporting the mapping exercise and the publication of this report, and to the Baily Thomas Charitable Foundation for funding the study. They are especially grateful to Virginia Bovell, David Potter and Su Thomas who initiated the project and whose enthusiasm, encouragement and friendship sustained us throughout the work and enabled us to complete what we set out to achieve. Any errors, inaccuracies or biases are the responsibility of the authors.
Autism† is more common than was previously recognised (Wing & Potter, 2002). This has led to renewed efforts to summarise the state of the science and identify priority areas for future research by scientific and practitioner bodies in the UK and the USA (Institute of Medicine, 2001; Medical Research Council, 2001; National Academy of Sciences, 2001; National Autism Plan for Children, 2003; Novartis, 2003; Public Health There is increasing recognition that discussion and dissemination of research findings and identification of priority areas for future research should involve a dialogue between scientists, policy-makers, people with autism and their families. In the absence of such a dialogue there is a risk of misunderstanding and a breakdown in communication. For instance, the public cannot evaluate the relative merits and opportunities of scientific findings, nor why particular programmes of research are being pursued, unless research is disseminated in an open and accessible manner. A different type of risk is threatened if the research and policy-making communities set de facto research priorities (in terms of awarding grants to specific programmes) without taking a comprehensive overview of the field. This should include taking account of the views of the non-academic community in the identification of appropriate goals for research and taking advantage of their insights into the challenges that autism presents to individuals and families based on their experience of autism ‘all day every day’.
In this context, Parents Autism Campaign for Education (PACE) and The National Autistic Society (NAS) initiated an exercise to ‘map’ the state of the autism research field in the UK. This exercise was developed and conducted in partnership with an academic base – the Institute of Child Health (ICH). The mapping exercise Gather the views of scientists and the non-academic community regarding priorities for Identify the pattern of research funding for autism in the UK Compare current research activity in the UK to that in the rest of the world Identify emerging themes and priority areas for future research in the published This report summarises the most important findings to emerge from this exercise. No one source of information can determine future priorities. However, the strategy of combining information from different sources and discussing the findings of the mapping exercise with the different stakeholder groups should help determine appropriate research priorities and goals over the coming years. The findings of this report will prove to be a useful guide to funding agencies and government departments with respect to current strengths and weaknesses of the UK research field. It is intended to help them identify emerging areas of research in which academics and those affected by autism see likely benefits, in order to set effective funding priorities.
†Autism is now considered to be a spectrum of related conditions (‘autism spectrum disorders’ including Asperger syndrome and pervasivedevelopmental disorder) that vary in severity. For simplicity the term ‘autism’ will be used throughout the report.
The current report makes a unique contribution by gathering views about priorities from scientists and from people with autism and their families; by contrasting research activity and funding in the UK to that in the rest of the world; and by integrating information about research activity, research funding, views on future priorities, and emerging themes in the published literature in one document.
Autism spectrum disorder is the term used to describe a range of behaviourally defined neurodevelopmental conditions. They are characterised by impairments in social interaction, social communication and language development and a restricted repertoire of interests, behaviours and activities. Sensory abnormalities and unusual interests in some sensations are common. A lack of imaginative play indicates an underlying difficulty with generation of ideas that is highly relevant in the development of understanding of, and thinking about, other people and other situations. All of these characteristics can be seen in varying degrees of severity (World Health Organisation; ICD-10, 1993). As a developmental condition the manifestation of autism for any one individual will vary across the lifespan and also with maturation, the effects of different environments and due to specific interventions and treatments. One view held by many scientists and individuals with autism and their families is that these characteristics are shared in varying degrees of severity with the ‘neurologically typical’ population.
Autism affects millions of people worldwide, yet many gaps remain in our understanding of the condition. This has led to renewed efforts by scientists, practitioners and affected families to summarise the state of the science and identify priority areas for future research. Unique information is added by this mapping exercise adds to the dialogue in the UK between funding agencies, government agencies, researchers and people with autism and their families. The overview is crucially important as it will enable the research and policy-making communities to support research relevant to the views not only of scientists but also of affected families.
Gathering views from scientists, people with autism and their families enables us to highlight where agreement about areas of need exists and where opinions differ. Information from research funding agencies provides for the first time a picture of the distribution of research funding in the UK.
No previous reviews have systematically compared autism research in the UK to that in the rest of Priority areas emerging from a literature review and suggestions from experts in the field in a comprehensive range of research areas are collected together in one document.
Views of researchers and the non-academic community aboutfuture priorities Scientists and the non-academic community were in agreement that research into the causes of autism and the effectiveness of different interventions were priority areas.
However, at the level of the specific type of research required into causes and interventions, there was some difference in the opinions of researchers and non-academics.
The current exercise does not allow us to determine the reasons underlying the divergence of views between researchers and non-academics where these occurred. This topic should be a focus for future qualitative research studies.
Few people in either sector gave high priority to research on families and services. Attitudinal research is needed to identify the reasons for this, given the potentially beneficial impact of high quality research into the effectiveness and acceptability of services.
The major UK and USA government and charitable bodies that fund research on autism were asked to send summaries of the projects they supported between 1996 and 2000.
In comparison with the major USA government and charitable funding agencies, proportionally less research into the causes of autism is funded in the UK.
More research in all areas of science is funded in the USA than in the UK and research funding for autism is co-ordinated across government agencies in the USA.
Family and services research receive only a small proportion of research funding in both the UK Research activity in the UK and the rest of the world A systematic search of the published literature in a five-year period (1996-2000) enabled the number of active autism researchers in the UK to be compared to that in the rest of the world.
UK researchers accounted for 16% of active autism researchers on the main scientific databases.
One area of significant weakness in the UK is research into interventions. The proportion of researchers evaluating interventions in the UK was a third of that in the rest of the world.
Little research is published on family issues and services for people with autism even though this Priority areas identified from a review of the published literature These are summarised in Appendix A of the main report. They extend recommendations on existing knowledge and research gaps made in other recent expert statements. Joint working There is increasing recognition that identification of priority areas for future
research, evaluation of funding proposals and dissemination of research findings should jointly involve scientists, policy-makers, people with autism and their families.
Consensus view Researchers and non-academics agree that a greater emphasis should be placed
on research into both environmental and genetic contributions to the causes of autism and into well- controlled intervention studies.
Research into differing opinions needed There is some divergence of views between researchers
and non-academics in terms of the specific areas of research that are needed. It is important to understand these differences to increase the consensus on research priorities. Qualitative research studies should investigate this divergence of views.
New mechanisms required Mechanisms need to be developed to incorporate the views of
researchers, policy makers, people with autism and their families into future research and Overlooked areas deserve investigation Research into effects on families and research into
services are overlooked areas. Given the practical implications for government agencies in the education, health, social care and employment fields, and for the voluntary sector, the reason for these being such low priorities deserves further investigation.
Areas of weakness identified in the UK field These were research into interventions (where the
proportion of active researchers was low) and research into the causes of autism (where the proportion of research studies funded was low).
Regular monitoring of research activity At the moment, there is no overview of research activity
in the autism field. It would help in monitoring UK research if there was a systematic annual (a) research funding for autism in the UK from both government and charitable sources and Electronic network of scientists Using current information technology, this mapping exercise has
demonstrated that it is possible to identify the active autism research community in the UK. It may be useful to establish an electronic network of scientists in the autism field to disseminate research findings, collaborate with parent organisations and publicise research funding opportunities.
Future Activities • Models for policy and research strategy Initiatives from the USA (in particular the Interagency
Autism Coordinating Committee) and Canada (in particular the Canadian Autism Intervention Research Network) provide models for further development of policy and research strategy involving all stakeholders in the process.
The findings of this report will prove to be a useful guide to funding agencies and government departments with respect to current strengths and weaknesses of the UK research field. It is intended to help them identify emerging areas of research in which academics and those affected by autism see likely benefits, in order to set effective funding priorities. Clearly, no one source of information can determine future research priorities.
However, the strategy of combining information from different sources and discussing the findings of the mapping exercise with the different stakeholder groups should help in the decision-making process. We are encouraged that many of the conclusions from the mapping exercise are in agreement with other recent reviews prepared by government departments and agencies, as well as researchers, in the UK and the USA†. This newly documented information will contribute to the dialogue between research funding agencies, scientists and people with autism and their families about future research goals. The report also contains important conclusions about the dissemination of research findings and the translation of knowledge into †The report is intended to be complementary to other recent summaries of the field (Institute of Medicine, 2001; Medical Research Council, 2001;National Academy of Sciences, 2001; National Autism Plan for Children, 2003; Novartis, 2003; Public Health Institute of Scotland, 2001).
This mapping exercise gathered views from scientists and people with autism and their families regarding future research priorities, collated information about funding for autism research in the UK, and made a systematic comparison of research activity in the UK compared to that in the rest of the world. It also includes a comprehensive literature review of the current state-of-the-science in autism.
In order to organise and summarise the information collated from scientists and the non-academic community, funding bodies and the published literature, a classification system based on that used by the NAS Information Centre was employed. The largest research categories were broken down further into sub- categories to document areas of research in more fine detail.
1. Causes/Aetiology
An event or series of events that result in an individual developing autism.
a. Genetic causes
Genetics research including the broader autism phenotype, the inheritance of autism, chromosomal abnormalities and candidate gene causes.
b. Environmental causes
All factors other than genetic susceptibility, including obstetric and perinatal factors, gastrointestinal abnormalities and immunological causes.
2. Epidemiology/Prevalence
The number and distribution of cases of autism in a population.
3. Diagnosis and Assessment
All aspects of the identification of autism, from initial screening to the specific diagnostic assessment and tools that are used to measure the degree of impairment.
4. Symptoms
Signs that indicate a possible disorder or disease.
a. Neurology
Research investigating brain abnormalities in autism using examinations of brain tissue, structural and functional imaging techniques, animal models and neurochemical investigations.
b. Neuropsychology
Research investigating how abnormalities in cognitive and developmental processes and c. Behavioural
All aspects of behaviours that are associated with autism e.g. stereotyped and repetitive behaviours, sleep difficulties and toilet training.
d. Associated medical and psychiatric disorders
Medical disorders and conditions that are associated with autism e.g. tuberous sclerosis and epilepsy, and associated psychiatric disorders e.g. anxiety and depression.
5. Intervention/Treatment
a. Psychoeducational
Including behavioural interventions (e.g. ABA), communication-and language-focused interventions (e.g. PECS), play-based approaches and educational programmes (e.g. TEACCH).
b. Psychopharmacological
Psychopharmacological medicines, that is, prescription drugs used to treat autism.
c. Biomedical
Including non-mainstream, complementary treatments such as vitamin therapy, chelation therapy, secretin, diets and sensory integration approaches.
6. The Family and Services
Including a wide range of studies associated with the family function, effects on parents and siblings etc. All research into services available to individuals with autism (e.g. supported work schemes, community support and families’ experience of diagnostic and intervention services). Research on policy and financial matters was coded under this section.
Gathering views of people with autism and their families regarding future research priorities A list of parent and voluntary organisations was created whose membership included parents and other relatives of individuals with autism, individuals with autism, and professionals with an interest in autism. It was based on those autism organisations known to the NAS Information Centre. The list contained the following: Families for Early Autism Treatment (FEAT) (now known as the Schafer Report) Parents Autism Campaign for Education (PACE) Parents for the Early Intervention of Autism in Children (PEACH) Independent Living on the Autism Spectrum web mailing list These organisations were contacted and asked to relay our request for information to their mailing list. In some cases the message was forwarded to email server address books, whilst in others our call was reproduced in newsletters or other publications. The call for information was also posted on parent organisation websites (including Allergy induced Autism (AiA) and Autismconnect) and in Communication, the NAS publication.
People were asked for their views on the future priority areas for research. This approach was couched as an opportunity for the non-academic community to have ‘their say’ about the future direction of autism research.
In total 123 responses were received from parents of people with autism (N = 98), advocates and professionals working in the field (N = 17), international societies (N = 6) and respondents who identified themselves as individuals with an autism spectrum disorder (N = 2). As these subgroups are not large enough to compare, for example, parent vs. professional responses, data will be presented for the responses received from the non-academic community combined. For comparison of these responses with those of responses received from researchers we will use the shorthand notation ‘parents’ (as the predominant respondents) to refer to this group in the data presentation. We have no mechanisms to test how representative the responses we received are of the opinions of the broader non-academic autism community. One limitation of the current exercise is that the particular section of the non-academic community whose views were sought may be mainly parents of people with autism, perhaps predominantly of young children, although we did not systematically enquire as to this information.
Their concerns and priorities might differ from those of parents of adults with autism, professionals working with adults with autism, and adults with autism. Any future research that solicits views regarding priorities for research and service development in the field must include parents and carers of adults with autism and Many of the responses received from the non-academic community expressed their thanks at being given the opportunity to have their say on future research priorities, and also how important they thought the mapping project was. Below are two examples of responses received from parents.
“Our 3 and a half-year-old son was recently diagnosed with autism. We are still suffering from information overload about the disorder, but from our preliminary reading of the subject so far, I would suggest that the main areas of research should focus on: Fundamental brain structural changes and brain chemistry in autism, including genes responsible An evidence-based approach as to which early interventions really do make a difference to long term outcome. The Lovaas approach needs restudying with bigger numbers.
Specific interventions such as types of speech therapy need to be continuously evaluated.
Rather like the UK Leukaemia trials, it might be an idea to look prospectively at a specific problem “I consider that the biochemical differences in our children need to be fully identified and investigated as a matter of urgency and strategies to help our children maximise their potential development – e.g.
the role of diet, which medicines/supplements could help, what are the role of Essential Fatty Acids, From this base it should be possible to develop a protocol for testing and appropriately treating autistic children immediately upon diagnosis (or preferably just upon suspicion of autism). Such research could build upon that currently being done in the US by the Defeat Autism Now (DAN) group of doctors.” Active researchers in the autism field were identified for two purposes. First, in order to gather their views about future research priorities. Second, to assess the amount of research activity in different fields internationally and then to compare the profile of UK research activity to that in the rest of the world. The ISI (Institute for Scientific Information®) database was used as the source of information regarding peer-reviewed published research. ISI is the largest, most up-to-date online database of scientific research. ISI is made up of three multidisciplinary databases: the Science Citation Index, the Social Sciences Citation Index, and the Arts and Humanities Citation Index. Each database holds the abstracts of the core journals (over 8,100) in addition to research articles, book reviews, editorials, letters and biographical material. Coverage in each of the citation indexes extends back to 1981 and approximately 22,000 new articles are added each week.
A systematic search was conducted on ISI for literature published in a five-year period (1996-2000) with a keyword of autis* (covering autism, autistic, autist etc.). This search yielded 3,107 results. That is, just over three thousand scientific articles about autism had been published in the past five years (approximately 10 per week). The information from this search was exported to Reference Manager® software. The first authors on each of the database items were sorted into alphabetical order. Where an author had multiple entries as the first author, these were deleted, so that researchers did not appear as first author more than once in the database. In these cases, the topic of the article retained was selected to be most broadly representative of the work of the particular researcher. This reduced the list of researchers to 1,336. Many groups of researchers alternate the first authors on papers, so this helped to increase the number of different first authors.
The index of research activity we chose was at the unit of ‘researcher’. An alternative index would have been the absolute number of publications in each area of research. These alternative indexes of research activity have different strengths and weaknesses. A pragmatic decision was taken to use the ‘researcher’ and not the ‘publications’ unit of research activity since this would require fewer units to be coded and added to the By viewing each abstract, non-autism research that had been incorrectly identified by ISI (for example, ‘Some dinoflagellate cysts from the Kimmeridge Clay Formation in North Yorkshire and Dorset, UK’) was excluded, leaving a final total of 1,222 active autism researchers. The list of researchers was married with information provided by the NAS Information Centre on researchers active in the field of autism to ensure no significant researchers had been omitted – none had. Contact details (email, fax or address) were identified for 972 researchers by searching online for their research institution. Many (predominantly junior) researchers had moved from the research institution that was listed on ISI at the time their research was published, which meant that it was not possible to identify a current contact address for all active researchers identified.
All 972 researchers were contacted and a request was made for information on the topics of current research they were involved in, on agencies that had funded their autism research over the past 5 years, and their views on priorities for autism research in the next 10 years. Publicity about the mapping exercise was published in the main autism journals (Journal of Autism and Developmental Disorders, Autism: The International Journal of Research and Practice, Focus on Autism and other Developmental Disabilities) and the inaugural IMFAR (International Meeting For Autism Research) conference programme (San Diego, California, November 2001), to increase awareness about the project and hopefully to increase returns from our request A total of 207 responses were received from the researchers contacted, representing a response rate of those autism researchers approached of 21% and an overall response rate of 17% of all active autism researchers identified from the ISI databases. Of these responses, 23 were from researchers who did not provide the requested information. This included some researchers sending reference lists of all their published work, CVs and links to their websites. This left 184 analysable responses. Given the high cost (and likely low return) of re-contacting non-responders this was not considered a good use of time.
The information received from the researchers was categorised by topic area, coded and entered onto a statistical database (SPSS®). The published literature from the search identifying all active autism researchers on the ISI database (N = 1,222) was coded in the same way. This provided a way of categorising the topic areas of autism research published in the past five years, which allowed us to identify any bias in the research areas of researchers who had responded to the call for information. A comparison of research topic areas between the researchers who responded to our enquiry and all autism researchers on ISI revealed that our sample of researchers was fairly representative (data not shown). Major UK government and charitable bodies that fund autism research were identified from the names of funding bodies frequently mentioned in acknowledgements of papers, from sources of research funding identified by the UK-based researchers who responded to our survey, from a search of web-based NHS funding summaries (National Research Register), and from our experience of reviewing grants for UK-based In order to have a comparison to this data on UK-based research funding we sought information from two (not completely comprehensive) sources of autism research funding in the USA. First, as there are several well-established USA autism charities that fund significant amounts of research, the two largest were approached: the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN). Second, the USA National Institutes of Health (NIH) was approached as it funds a significant amount of autism research across its many divisions (e.g. National Institute of Child Health and Human Development (NICHD), National Institute on Deafness and Other Communication Disorders (NIDCD), National Institute of Mental Health (NIMH), National Institute of Neurological Disorders and Stroke (NINDS)). It also has a centralised system for indexing its research funding and a co-ordinating committee for autism research.
The following UK-based government and charitable organisations that have funded research into autism were identified, as were the above-mentioned USA organisations: Biotechnology and Biological Sciences Research Council (BBSRC) Economic and Social Research Council (ESRC) National Health Service (NHS)/Department of Health (DoH) Research and Development National Alliance for Autism Research (NAAR) Each of these organisations was contacted and a request was made for them to send copies of their annual reports from 1996-2000 i.e. overlapping with the review of research activity from the ISI database.
Information regarding the title and aims of each autism research project funded in the five-year period was extracted from the reports. The research information from funding agencies was categorised in the same way as the information obtained from the ISI researcher database. Separate entries were not made for a single project for every year the project received funding when the lifetime of the grant was greater than one year (i.e. each individual project was only counted on one occasion).
The summary of research projects funded by UK-based funding agencies is not exhaustive but every effort has been made to systematically collate this information. Organisations not responding to our initial request were contacted a second time. Some (for example, those known to have funded autism research from acknowledgements in publications or from information sent by researchers who responded to our survey) did not respond to this second request. For some funding agencies full information for the five-year period was not available. For yet others, only the individuals and institutions funded and not the topic of the research projects funded were detailed in the material sent in response to our request. Because the topic of these research projects could not be categorised according to our system, information on these projects was not included in the database and was therefore excluded from the following summary.
Thus, the research summarised under-represents the total number of UK autism research projects funded in the five-year period and we cannot tell what bias was introduced through this process. These limitations also apply in part to the information we received from the USA funding agencies. Information on the amount of research spend, as opposed to the number of projects funded, was variable across the responses received and was sometimes hidden by a summary of spend across autism and non-autism studies. For the purposes of this mapping exercise, therefore, the total number of projects funded is the unit count.
Recent literature was reviewed using the same categorisation system. The exercise was not a systematic review but rather involved careful reading and integration of recommendations in recently published reviews, as well as reading of the most important original sources. The topics covered overlapped with other recent state-of-the-science reviews cited previously on page 3. For the purposes of the mapping exercise, the focus was on identification of consensus views regarding priority areas for future research, likely to bring significant gains in knowledge and understanding. Some of the recommendations involved the extension and re-focusing of ongoing research enterprises, whilst others involved more ‘high-risk’ or ambitious but potentially beneficial Within each category area, feedback and comments were solicited from senior academic researchers in the field (see Appendix A). The reviewers were asked to consider the following in their comments: If they agree with the suggested future directions If further future directions should be added.
However, the content of the literature reviews and the summary recommendations contained in this report – and any inaccuracies or biases represented therein – represent the views and opinions of the authors of this The priorities for future research identified via the literature review are shown in Appendix B. Figure 1 shows the distribution of research on autism published in the last five years as indexed by the ISI author count, classified into the 6 major category areas: causes, epidemiology, diagnosis and assessment, symptoms, intervention and family and services.
Figure 1 – Global research activity in autism
4% Family and Services
18% Causes
20% Intervention
2% Epidemiology
4% Diagnosis
52% Symptoms
By far the largest proportion of research activity was in the area of symptoms (52%). There were four subcategories within this section: neuropsychological, neurological, comorbid disorders and behavioural The breakdown of research at the sub-category level in the area of symptoms shown in Figure 2 overleaf reveals that nearly half of research into symptoms (48%) was directed at investigating the neuropsychological symptoms of autism. Approximately one fifth was in the area of neurological symptoms (21%) and comorbid disorders (19%) and just over one tenth (12%) was in the area of behavioural symptoms. In our coding scheme, the neuropsychological symptoms category included research in cognitive psychology (e.g. theory of mind, executive functions), communication, socialisation and language. These aspects form the core deficits of autism, which may explain why a high proportion of research into symptoms of autism focused on these Furthermore, many of these studies were small, group experimental studies requiring less time and resource than other areas of work demanding greater capacity in terms of multidisciplinary collaboration (for example, in research into comorbid disorders), multi-site collaboration (for example, in genetic research) or time (for example, in longitudinal intervention designs).
After research on symptoms of autism, research on intervention (20%) and causes (18%) were the next most common areas of research (Figure 1). Looking at the subcategories of research into causes, approximately two-thirds of research into the causes of autism was genetic (63%) and one-third environmental (37%), which included all aetiological research other than genetic research (e.g. birth complications, immunological causes etc. see Figure 3). Looking at the subcategories of intervention research, 42% was psychoeducational, 34% was psychopharmacological and 24% was biomedical (Figure 4).
Figure 2 – Breakdown of research on symptoms
Figure 3 – Breakdown of research on causes
12% Behaviour
48% Neuropsychological
37% Environmental
19% Comorbid
63% Genetic
21% Neurology
Figure 4 – Breakdown of research on intervention
23% Biomedical
62% Psychoeducational
15% Psychopharmacological
A relatively small amount of research has been published in the last five years on the topic of diagnosis and assessment (4%) and epidemiology (2%) (Figure 1). These categories are relatively specific compared to ‘umbrella’ categories such as causes, symptoms and interventions. In the case of epidemiology, the low index of research activity also reflects the large and time-consuming nature of such research studies.
The category of family and services formed only 4% of research activity into autism during the last five years.
This is a surprisingly low figure given the large number of topics covered by this category. For example, it included studies investigating the effects of autism on siblings and parents, educational services, services for adults, families’ experience of diagnostic and interventions services and economic and policy-based issues.
Research activity is dominated by research into the symptoms of autism, although research into causes and intervention are also well represented.
A low proportion of research was being conducted into a wide range of family, service and policy issues. Given the change in our understanding of the prevalence of autism considerably more research into these diverse topics will be required.
Research priorities identified by people with autism and their families The 123 parents, professionals and people with autism who responded to our survey identified 248 priority areas for future research (as individuals could prioritise more than one area). Only half of the parents identified a country of origin. Of those who did, nearly one half were from the UK (44%) and a similar proportion were from North America (45%). Only a few respondents identified themselves as being from non- Figure 5 – Non-academic community identified priorities
4% Family & Services
32% Intervention
42% Causes
13% Symptoms
2% Epidemiology
7% Diagnosis
Figure 5 shows the distribution of the parent identified research priorities for future research. Almost half of the respondents (42%) identified research into the causes of autism as a priority and one third (32%) Research into symptoms of autism was identified as a priority by only 13% of respondents. Looking at the subcategories of responses (data not shown), three-quarters of parents and professionals (75%) identified research into environmental causes as a priority area and one quarter (25%) identified research into When considering the types of intervention research, parents and professionals suggested that research into biomedical interventions was the greatest priority (56%), followed by research into psychoeducational interventions (39%). Only a minority of respondents called for more work into psychopharmacological interventions (5%). Surprisingly, parents did not make research into families and services a high priority (4%). Parents and professionals who responded identified research into the causes of autism as the main priority, followed by research into interventions.
Parents particularly called for research into environmental causes and they did not see research into psychopharmacological interventions as a priority.
Research priorities identified by researchers Judging the representativeness of academics who responded to our survey When we compared the countries of origin of autism researchers identified on ISI and the countries of origin of the researchers who responded to our request, a fairly similar pattern emerged. Just under half of the responses from researchers (45%) came from academics in North America, one quarter (24%) came from the UK and 17% from Europe (not including the UK). Thus, there was a slightly higher percentage of responses from the UK compared to the proportion of ISI-identified UK researchers (16%). This probably reflects an English language bias and perhaps greater knowledge of and interest in the mapping project in the UK. A very similar pattern was revealed, too, when we compared the research topics studied by those researchers who responded to the total ISI breakdown of research activity (data not shown). At the very least, these comparisons indicate that the responses received did come from a fairly representative sample of countries and from researchers engaged in a fairly representative range of research activity. However, we are not able to judge the representativeness of the respondents in comparison to all autism researchers worldwide in other Researcher future priorities in comparison to current research activities One comparison of interest is that between the current topics researchers were investigating and those they identified as priorities for future research. This can be taken as one index of the academic community’s views as to what shift in research focus is required in the field. Figure 6 shows the distribution of current research topics of academics who responded to our survey alongside their suggested priorities for future research. The 186 respondents to our survey were classified as being active in 307 research areas (as individual researchers could be active in more than one area) and identified 331 priority areas for future research (as individual researchers could prioritise more than one area).
Figure 6 – Researcher identified priorities
Current research area (N=307)
Future research priorities (N=331)
We expected that researchers would tend to nominate the area in which they themselves worked as a priority area for future research, as this has an internally consistent logic in terms of motivation and interests.
However, there were a number of significant discrepancies between current topics studied and researcher Most notably, researchers indicated that less research into symptoms of all types was needed in future than they themselves were currently undertaking (27% compared to 45%) and that more research into causes than they themselves were currently undertaking was required (29% compared to 18%). Less strong trends were seen for researchers suggesting that more research on diagnosis and assessment (12% vs. 7%) and on interventions (28% vs. 21%) was required than they themselves were currently undertaking. Researchers did not identify research into families and services as a high priority (3%).
Researchers indicated that significantly more research into the causes of autism is required, as is The researchers who responded to our survey indicated that less research into symptoms of all types is needed in future than is currently being undertaken.
Comparison of ISI identified research activity, researcher and parent priorities Figure 7 compares the distribution of current research activity indexed by ISI identified researchers to the future priorities for research identified by scientists and by the non-academic community, respectively. In order to make the comparison across these 3 sources of data simpler only the largest categories of research are included, namely causes, interventions and symptoms. The remaining research categories are combined into an ‘other’ category (epidemiology, diagnosis and assessment, family and services).
Figure 7 – Comparison of ISI activity and researcher and non-academic community priorities
The pattern of findings revealed that neither researchers nor parents and professionals think that the current distribution of research activity (by our ISI researcher index) into autism is correct. Both groups agreed that more research into the causes of autism was required and that more research into interventions was also Conversely, both researchers and parents indicated that less research into symptoms of autism was required.
In both of these patterns the shift from ISI to researcher priorities to parent and professional priorities showed some linearity: researchers felt there should be more research than is currently conducted into causes and parents/professionals felt this to a stronger degree. The same pattern held, though less strongly, for intervention research. The reverse effect was seen for research into symptoms where the difference in emphasis between researcher priorities and parent priorities was stronger than that between ISI and researcher priorities. The only other more minor trend was that researchers had a higher priority in the ‘other’ category. This was accounted for by a call from researchers but not parents for more research on diagnosis.
Figure 8 – Comparison of ISI and researcher and non-academic community priorities on causes
Figure 9 – Comparison of ISI activity and researcher and non-academic community priorities
on intervention
Researcher: biomedical ISI: psychopharmacological Once researcher and parent/professional priorities were examined at the subcategory level it is clear that there was somewhat less consensus than at first it appeared. However there was still considerable overlap in some areas. Figures 8 and 9 show the same ISI research activity vs. researcher identified priorities vs. parent and professional identified priorities for the subcategories of the causes and intervention categories. Figure 8 indicates that whilst researchers and parents agree that there should be more research into the causes of autism they disagree on what likely cause should be investigated. Researchers’ priorities were more in line with the current breakdown of research activity into causes, with 6 in 10 identifying aetiological research in the area of genetics as a priority, although nearly 4 in 10 identified research into possible environmental causes as a priority. This breakdown is reversed for parents who felt that environmental causes were the main priority for future research over genetic causes (75% compared to 25%).
This pattern of findings might have been expected given the high profile given in the media and in the non- academic community (e.g. on the internet and in parent organisations) to perceived but unproven associations between autism and environmental agents including the MMR vaccination and thiomersal. However, it is interesting to note that as many as 38% of scientists identified environmental causes as worthy of further investigation. Whether this is based on a belief that the environment may be contributing to autism, or whether it is out of a desire to disprove certain environmental hypotheses, is something that might be worthy of further investigation through attitudinal research.
In the area of interventions, the overall agreement between researchers and parents that more research on interventions is required also masks some differences of views at a more detailed level (see Figure 9). Parents thought the level of current research (42% as indexed by ISI researcher activity) into psychoeducational interventions was about right (39%) but researchers placed this as the main priority (64%) for research into interventions. Researchers may be most aware of the dearth of well-controlled treatment trials of psychoeducational approaches that could be addressed by future studies.
Conversely, whilst researchers identified research into biomedical treatments as a lower priority (12%) than the current level of activity (24%), for parents it was the highest priority in the intervention category (56%).
This may relate to the above concerns of parents regarding perceived environmental causes of autism and interventions relating to diet or secretin that have received wide publicity. A different picture again emerged from the responses on psychopharmacological interventions. Researchers placed this as a priority slightly below the current level of research in this area but few parents (5%) felt this was a priority. We do not know if this was a general view or one formed by parents who responded following personal experience of Whilst there was apparent agreement at the main category level between researcher and parent/professional identified priorities, with both calling for more research into causes and interventions, this disguised some divergence of views.
Researchers felt that the current balance of research into genetic and environmental causes was appropriate, whilst parents argued for more research into environmental causes. However, nearly 4 in 10 researchers also identified research into possible environment factors as a priority.
Parents thought that research into biomedical interventions was a priority and did not favour research into psychopharmacological approaches. Over half of researchers argued for more research into psychoeducational approaches, as did nearly 4 in 10 parents.
The current exercise does not allow us to ascertain what underlies this divergence of views but this topic could form the focus of a future qualitative and attitudinal research projects, for example via discussion forums involving funding, researcher and non-academic stakeholder groups. It is important to understand these differences to increase the consensus on research priorities.
From the searches and requests for information made a total of 46 UK funded research projects into autism were identified. From some funding agencies full information for the 5 year period was not available. From others only the individuals and institutions funded but not the topic of the research projects were available so these projects were excluded. The total of 46 therefore, under-represents the true level of funded projects Figure 10 – Breakdown of UK research funding
7% Family & Services
17% Causes
17% Intervention
4% Epidemiology
2% Diagnosis
53% Symptoms
Figure 10 shows the distribution of funded UK autism research projects in the years 1996-2000 across the research category areas. The largest proportion of funding is concentrated within the symptoms category (53%). Intervention (17%) and causes (17%) research are the next largest areas of autism research funded in the UK. (See overleaf for funding comparisons with the USA.) In order to contrast government (NIH) and charitable (CAN, NAAR) allocation of funds into autism in the USA these figures are presented separately. Figures 11 (in terms of proportions) and 12 (in absolute numbers of projects) compare the number of projects in each of the topic areas funded in the UK to the number of projects in each area funded by the USA funding bodies. Figure 12 shows that both the USA charitable and government sources funded a significantly higher number of projects than the UK funding agencies. Figure 11 – Proportion of funded research projects UK vs USA charities vs NIH
UK (N=46)
NAAR/CAN (N=124)
NIH (N=437)
Figure 12 – Number of research projects funded UK vs USA charities vs NIH
UK (N=46)
NAAR/CAN (N=124)
NIH (N=437)
Figure 11 shows that both the USA charities surveyed (40%) and NIH (26%) funded a higher proportion of studies into the causes of autism compared to UK funding agencies (17%). Conversely, the proportion of projects funded into interventions was greater in proportional terms in the UK than in the USA. This contrasts to what is reported below: that there are proportionally fewer intervention researchers in the UK compared to the rest of the world from the ISI researcher index. This discrepancy is accounted for in part by the intervention studies and school/programme evaluations funded by The Shirley Foundation (3 out of 8 studies). In terms of absolute number of projects funded (Figure 12) there was still very considerably more intervention research funded by NIH than by all of the UK funding agencies combined. All UK and USA sources funded the largest proportion of studies in the area of symptoms of autism, reflecting the predominance of this research in our ISI index of research activity. The area of family and services represented a low proportion of funded studies by the UK, USA charity and NIH funding agencies (varying between 3% and 7%).
Proportionally more research into the causes of autism is funded in the USA both by autism charities Although proportionally the level of research activity on intervention in the UK appears to be healthy, this in part reflects the effect of one charity only. In terms of the absolute number of intervention projects funded the activity in the USA considerably outstrips funding in the UK.
Research into symptoms of autism continues to secure the greatest proportion of funding in the UK The proportion of funded research in the area of family and services is low in both the UK and the Country of origin of ISI identified autism researchers Figure 13 shows the country of origin of ISI identified autism researchers. The largest proportion of autism researchers originated in North America (the USA and Canada; 53%). ISI identified Europe (excluding the UK) (22%) and the UK (16%) as the next largest places of origin of ISI identified researchers. Only a small number of autism researchers from other continents were identified on ISI. However, one important caution is that the ISI database has a clear bias to English-language research and many and perhaps most non-English language academic journals are not included on the databases (except where non-English articles are published on ISI with English Abstracts). For the purposes of the current exercise we only had the resource to categorise English language abstracts and the breakdown of research activity is at the level of ISI published research rather than a true reflection of the global picture.
Figure 13 – Country of origin of ISI researchers
3% Australia
1% Middle East
1% South America
22% Europe
53% North US
Comparison of research activity in the UK vs. the rest of the world indexed by ISI identified autism researcher topics In order to examine whether there are differences in research activity in the UK compared to other countries whose researchers publish in journals included on the ISI database, we examined the same category breakdown for UK based academics (N = 195) and non-UK based academics (N = 1,027). Figure 14 shows this comparison.The proportion of research activity in the UK was fairly similar to that in the rest of the world across the causes, diagnosis and assessment, epidemiology, and family and services categories, but some differences in research activity in different areas emerged. The most striking finding was this: in the non-UK research community (23%) compared to the UK research community (8%) almost three times the level of research activity focused on interventions (in all intervention subcategory types - psychoeducational, psychopharmacological and biomedical; data not shown). Other less striking differences were that research into various symptoms of autism is higher in the UK than in other countries (59% compared to 50%). The predominance of research into symptoms in the UK may in part reflect the fact that some areas of cognitive neuropsychology of autism (e.g. theory of mind, central coherence) originated from academics in the UK and that the UK is still strong in these areas (Medical Research Council, One area of significant weakness in the UK is research into interventions. The proportion of researchers evaluating interventions in the UK was a third of that in the rest of the world. This held true across all types of intervention research.
The level of research activity in the UK is relatively strong, with UK researchers accounting for 16% of active autism researchers on the main scientific (English language) databases.
Figure 14 – Comparison of UK vs rest of the world research activity
Non UK (N=1,027)
UK (N=195)
from the mapping exercise with other recent reviews The mapping exercise was undertaken to contribute to the dialogue between funding agencies, government agencies, researchers and individuals with autism and their families regarding priority areas for research into autism. The report is intended to be complementary to other recent summaries of the field†. However, it adds Gathering views from scientists and people with autism and their families enables us to highlight where agreement about areas of need exists and where opinions differ.
Information provided by research funding agencies provides for the first time a picture of the distribution of research funding in the UK.
No previous reviews have systematically compared autism research in the UK to that in the rest of Priority areas emerging from a literature review and suggestions from experts in the field in a comprehensive range of research areas are collected together in one document.
What are some of the most important findings to have emerged? Proportionately less research into interventions (of all types) is conducted in the UK compared to the rest of the world, although interventions were not under-represented in terms of funded projects (largely due to the efforts of the Shirley Foundation) Research into the causes of autism and research into interventions are seen as priorities both by scientists and by the non-academic community. There are clear emerging themes in the literature in both areas, for example the need to understand the contributions of both genetic and environmental factors in the causation of autism and the need for more rigorous and well-controlled studies of Some areas of disagreement or divergence emerged in terms of the views of parents/professionals and researchers regarding the types of research into causes and interventions that they saw as priorities. However, there was also considerable overlap in the priorities set by researchers and The present exercise cannot identify the reasons for the divergence of views identified and these should be explored in future attitudinal and qualitative research studies. Researchers and research funding agencies need to consider the lessons from such research for the dissemination of research findings and the influence this has on community opinions (for example through the general media).
Innovative approaches to some of these issues have been attempted in both the USA and Canada.
– The Canadian Autism Intervention Research Network (CAIRN; www.cairn-site.com) is a partnership between researchers, parent organisations, professionals and policy makers. It aims to develop research priorities, conduct evidence-based research and to communicate findings †(Institute of Medicine, 2001; Medical Research Council, 2001; National Academy of Sciences, 2001; National Autism Plan for Children, 2003; Novartis,2003; Public Health Institute of Scotland, 2001).
(for example by providing web-based summaries of recently published research in an accessible and authoritative form for the lay and professional community alike).
– In the USA an Interagency Autism Coordinating Committee (IACC) has been established to coordinate autism research and other efforts within the Department of Health and Human Services (DHHS). The National Institute of Mental Health (NIMH) has been designated the lead agency for this activity. The IACC reports on its activities to Congress. The committee's primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programmes and initiatives. Public members of the IACC helps bring to DHHS the concerns and interests of members of Clear areas that were under-researched emerged. In particular there were a broad range of issues regarding service delivery (and effectiveness), accessibility and choice, the effects on families and the community in general, financial implications of the increased recognition of autism and the subsequent demands on services. When autism was considered a rare condition such issues appear largely to have been left off the research map but this has now changed with the increased recognition of the likely true prevalence.
Efforts need to be made to encourage researchers in collaboration with research funding agencies, families, professionals and individuals with autism to develop high quality research programmes into the effectiveness and acceptability of services.
Another area that appears to largely have been overlooked and one that was not systematically ascertained in our indexing of research activity was the lack of a solid research base with respect to adulthood and autism. This may in part reflect views we received from the non-academic community, the majority of whom may have been parents of children. However, there is a clear consensus in the literature and from expert opinion that, despite isolated examples of good practice, many worthwhile areas have been little studied to date. This by no means exhaustive list includes: the epidemiology of autism in adulthood; the prevalence, identification and treatment of associated (e.g. psychiatric) comorbidities; service use; employment opportunities and development of appropriate living arrangements; life-stage transitions for individuals and families and issues regarding quality of life and community integration. Another output from this mapping exercise is a more practical opportunity for the field. The use of new technology (the internet, electronic databases, email etc.) was important in allowing us to efficiently and systematically combine information and to contact a wide number of individuals and At the moment no overall overview is held about research activity in the autism field. Using current information technology, this mapping exercise has demonstrated that it is possible to identify the active autism research community in the UK. There may be opportunities in the UK to use such technologies to monitor and systematically review research into autism in a number of ways. The – The establishment of a UK autism research database or email network.
– Ongoing monitoring of research activity in the UK as indexed by funded projects or research outputs in terms of published peer-review papers.
– Collation of information from both government and charitable sources of research funding in the UK.
The findings of this report will prove to be a useful guide to funding agencies and government departments with respect to current strengths and weaknesses of the UK research field. It will help them identify emerging areas of research in which academics and those affected by autism see likely benefits, in order to set effective funding priorities. Clearly, no one source of information can determine future research priorities. However, the strategy of combining information from different sources and discussing the findings of the mapping exercise with the different stakeholder groups should help the decision-making process.
We are encouraged that many of the conclusions from the mapping exercise are in agreement with other recent reviews prepared by government departments and agencies, as well as researchers, in the UK and This newly documented information will contribute to the dialogue between research funding agencies, scientists and people with autism and their families about future research goals. The report also contains important conclusions about the dissemination of research findings and the translation of knowledge into References
Institute of Medicine Immunization Safety Review Committee (2000) Immunization Safety Review: Measles Mumps Rubella Vaccine and Autism.
Chicago, IL: American Medical Association.
Medical Research Council (2001) MRC Review of Autism Research - Epidemiology and Causes. London: MRC.
National Initiative for Autism: Screening and Assessment (NIASA) (2003). National Autism Plan for Children. Report produced in collaboration with theRoyal College of Paediatrics and Child Health, the Royal College of Psychiatrists, and the All-Party Parliamentary Group on Autism (APPGA). London: NAS.
National Research Council (2001) Educating Children with Autism. Committee on Educational Interventions for Children with Autism. Division ofBehavioral and Social Sciences and Education. Washington, DC: National Academy Press.
Novartis (2003). Autism: Neural basis and treatment possibilities, Novartis Foundation Symposium 251, (pp. 10-19). Edited by M. Rutter. Chichester: Wiley.
Public Health Institute of Scotland (2001) Autistic Spectrum Disorders - Needs Assessment Report. NHS Scotland.
Wing L & Potter D (2002) The epidemiology of autistic spectrum disorders: Is the prevalence rising? Mental Retardation and Developmental DisabilitiesResearch Reviews, 8, 151-161.
World Health Organisation. (1993). Mental Disorders: A Glossary and Guide to their Classification in Accordance with the 10th Revision of theInternational Classification of Diseases: Research Diagnostic Criteria (ICD-10). Geneva: WHO.
Appendix AScientists who commented on the literature reviews or other aspects of the report For the purposes of the literature review, within each category area feedback and comments were solicited from senior academic researchers in the field. The reviewers were asked to consider the following in their If they agree with the suggested future directions If further future directions should be added.
Other scientists were asked to provide comment on early drafts of this report.
However, the content of the literature reviews and the summary recommendations contained in this report – and any inaccuracies or biases represented therein – represent the views and opinions of the authors of this report. We are grateful to the following scientists who found time from their busy schedules to contribute to Prof. Simon Baron-Cohen, University of Cambridge Prof. Deborah Fein, University of Connecticut Prof. Susan Folstein, Tufts University, Boston Prof. Eric Fombonne, McGill University, Montreal Prof. Catherine Lord, University of Chicago Prof. Joseph Piven, TEACCH, University of North Carolina, Chapel Hill Prof. Isabelle Rapin, Albert Einstein College of Medicine, New York Prof. Sally Rogers, MIND Institute, University of California Davis Prof. Sir Michael Rutter, Institute of Psychiatry, London Prof. Paul Shattock, Sunderland University Prof. Tristram Smith, Washington State University Dr. Philip Whitaker, Leicester Educational Psychology Service Dr. Lorna Wing, National Autistic Society Recent literature was reviewed using the same categorisation employed for the ISI (Institute for Scientific Information®)research activity, and researcher and parent views on priority areas. The exercise was not a systematic review but ratherinvolved careful reading and integration of recommendations in recently published reviews, as well as reading of the mostimportant original sources. The topics covered overlapped with other recent state-of-the-science reviews cited in the mainreport. For the purposes of the mapping exercise, the focus was on identification of consensus views regarding priority areas forfuture research, likely to bring significant gains in knowledge and understanding. Some of the recommendations involved theextension and re-focusing of ongoing research enterprises, whilst others involved more ‘high-risk’ or ambitious but potentiallybeneficial research designs. Within each category area, feedback and comments were solicited from senior academicresearchers in the field (see Appendix A). However, the content of the summary recommendations contained in this report –and any inaccuracies or biases represented therein – represent the views and opinions of the authors of this report.
1. Causes/aetiology
a. The genetics of Autism
Although it is well established that autism is highly heritable, it appears likely that several overlapping sets of predisposing
genes result in overall susceptibility in a complex and as yet not understood mechanism1,2,3. Whether (and which) environmental
risk factors contribute additional susceptibility remains to be determined. A small proportion of cases of autism are due to
single gene disorders and chromosome abnormalities. Linkage, association and candidate gene studies have not yet led to the
identification of a susceptibility gene.
Priorities for future research:• Further progress will be made in the genome-wide search for susceptibility genes by further delineation of the ‘core’ and broader phenotype and novel approaches to testing for susceptibility for specific components of the autism phenotype inisolation (e.g. language delay, regression, insistence of sameness, associated abnormalities e.g. sensory responses, head circumference).
• Similar strategies need to be employed across a range of familial designs, including large proband studies in combination with parent and sibling studies, studying multiplex families and the rare large kindred lineages that have been identified.
• Statistical power to accurately identify susceptibility loci will be improved by meta-analysis or combination of the • The potential to test for the presence of a high-risk genotype could significantly influence genetic counselling to • Once susceptibility genes have been identified, identification of the downstream biochemical processes, their effect on neuronal migration and delineation of the pathway to altered central nervous system development and the known neuropathophysiology of autism will begin.
• Developmental (as opposed to static) animal models of autism can then be developed.
• Genetically sensitive research designs that control for genetic effects will be necessary to investigate environmental risk factors that may be associated with autism.
b. Environmental risk factors
Whilst many environmental factors have been suggested in the scientific literature and amongst the lay community to be
associated with autism (implicitly the suggestion is that this association is causal) the empirical evidence-base is at present
insufficient to draw firm conclusions4. Certainly, to date only rare environmental risk factors have clearly been demonstrated to
play a role in the pathogenesis of autism (e.g. congenital rubella, perinatal cytomegalovirus5). Critical methodological issues
limit the conclusions that can be drawn. These include: sample bias, lack of empirical data to support key steps in the proposed
explanatory argument, lack of appropriate controls, poor diagnostic information, small sample sizes, lack of details about
laboratory methods and unconfirmed measurement of purported abnormalities6,7. However, as a consequence of significant
public concern regarding several of these purported mechanisms (e.g. MMR, thiomersal) research is ongoing that may provide
more secure answers.
Priorities for future research:• The possible role of environmental toxins and variations in neuropeptides and the functioning of the immune system in brain development and outcome should be explored using animal models.
• Reports of gastrointestinal abnormalities should be independently replicated and the relevance of the findings to the broader population of individuals with autism studied using non-invasive techniques in epidemiological samples.
• The effectiveness of possible interventions including gluten- and casein-free diets and immunnomodulatory therapies should be tested by rigorous randomised control trials. One obstacle to this research will be the identification of the subgroup of individuals for whom these therapeutic approaches may be helpful (and ethical given potential side effects).
However, as many parents opt to take up diet regimes it may be possible to use randomised control research designs (e.g. crossover placebo or waiting-list) designs using ‘opt-in’ convenience samples.
• High quality investigation of many putative factors is required in order to build a secure evidence base. This should take place in nationally recognised laboratories using large, representative, well-diagnosed and described sample, with appropriate controls.
2. Prevalence and epidemiology
It is clear that autism is more common than was previously recognised. There is agreement that changes in the
conceptualisation, content and application of the diagnostic criteria (especially to individuals with average or above average
IQ), and more rigorous methodology in recent prevalence studies, are likely to account for all or a large part of the putative
increase8,9,10. However, at this point in time a real increase of some size cannot be definitively ruled out. One difficulty in
interpretation of the literature is that different methods of counting cases (prevalence figures, service use databases and
registers) have been used to argue for apparent increases in incidence over time9. The majority of studies have examined
prevalence in child and adolescent populations, taking advantage of the integrated school and child healthcare systems.
Consequently, little is know about prevalence in adults.
Priorities for future research:• In depth, prospective studies of total population cohorts from birth are required in order to marry prevalence data with onset and disease course data. However, the relative rarity of autism may make this prohibitively expensive.
• Future prevalence studies should adopt a symptom as well as a syndromic approach. • Dimensional or trait approaches to identifying the prevalence of individual characteristics of autism (e.g. the broader phenotype of social impairment) in populations might complement case-based studies.
• When biological or genetic markers for a subgroup of individuals with autism are identified these should be included in prevalence designs. This is critical since autism is not a unitary disease entity or disorder but an end phenotype of a number of complex, distinct and overlapping aetiologies.
• The nesting of biological and genetic research designs within future epidemiological studies will provide information to better answer questions about heterogeneity of presentation and aetiology.
• Studies examining prevalence across the life course should be planned, despite the significant methodological and 3. Diagnosis and assessment
For many years the age of diagnosis of autism was unacceptably late. However, progress has recently been made in the earlier
identification of children with autism and many children are now first identified in the pre-school period11,12. Whilst it has been
possible to pick up unrecognised cases using screens, no instrument has yet proved sufficiently robust to recommend universal
screening13,14. However, autism screens can play an important role in improved surveillance for autism and other developmental
disorders. A multidisciplinary approach to diagnostic assessment is required. The information necessary for a diagnosis includes
a detailed developmental history, parents’ descriptions of the everyday behaviour and activities of the child, and direct
assessment of the child's social interaction style, communicative and intellectual function. If possible the direct observation
should include two contexts. The use of structured interview assessments (e.g. Autism Diagnostic Interview-Revised (ADI-R)15;
Diagnostic Interview for Social and Communication Disorders (DISCO)16 and observation schedules (e.g. Autism Diagnostic
Observation Schedule-Generic (ADOS-G)17, help systematise the range and depth of information collected. Developmental
assessments are important to identify possible problems and assist in an accurate diagnosis. They also provide an objective
description of a child’s abilities and deficits, which can be useful in deciding on appropriate intervention. There is an emerging
consensus on the range of appropriate medical investigations, depending on presentation.
Priorities for future research:• Further studies are required to develop and test screening instruments to determine whether universal population screening for autism and other developmental disorders is feasible and appropriate. Whatever the outcome of these studies, more work will be required to determine how and to what extent such screening instruments can enhance ongoing surveillance to detect autism.
• Further work on the validation and limitations of formal diagnostic schedules including the ADI, the ADOS and the • Earlier diagnosis and rising recognition as reflected in prevalence rates have significant implications for diagnostic and • Primary healthcare practitioners including general physicians, health visitors, playgroup, kindergarten and nursery school staff need to be made aware through training which early signs of possible autism warrant further investigation and what to do and say.
• Specialist child development services need to develop a referral strategy for autism and a multidisciplinary approach to the differential diagnosis from other, often complex, developmental conditions (NIASA, 2002).
• In the UK, the National Initiative for Autism Screening and Assessment sponsored by the Royal Colleges of Paediatrics & Child Health and Psychiatry12 should provide an impetus to greater provision of co-ordinated diagnostic, therapeutic and educational services for pre-school children with autism and their families.
4. Symptoms
a. Neurobiological basis of autism
Brain abnormalities in autism have been studied via post-mortem examination of brain tissue, structural and functional brain
imaging techniques, neurophysiological, neurochemical assays and animal models. Although it is clear that brain development
and organisation is abnormal in autism, the pattern of findings across these diverse methodologies is complex, and several
potentially important findings have either not been replicated or have been inconsistent across studies, although this may
reflect differences in the techniques used and samples studied. Post-mortem studies conducted to date have identified several
abnormalities: brain weight is increased in the majority of children (supported by structural imaging findings) and there are
decreased numbers of Purkinje cells18,19. Findings from functional imaging studies with typical adults and adults with autism
have identified abnormalities in the amygdala and fusiform face processing areas20,21. Important clinical signs associated with
autism, particularly the loss of language skills seen in the one third of children who regress, are not well understood22. Several
abnormalities in neurotransmitter systems have been reported, including serotonin and the cholinergic and the GABAergic
systems, although again findings across different studies are sometimes inconsistent23. Experimental lesion studies in non-
human primates have provided leads regarding the possible role of brain structures (e.g. the medial temporal lobe, the
amygdala) in autism pathology24,25.
Priorities for future research:• There is a need for further co-ordinated work to produce replicable findings that will produce clearer and better- established models of the brain pathology that underlies autism. In particular attempts should be made to corroborate findings using functional, structural and post-mortem studies.
• Post-mortem studies should include the study of neurotransmitters and well as other neuropeptides and neurotrophins • Further elucidation of neuropathology in autism must be linked with findings in genetics, the identification of possible environmental causes and psychopharmacological approaches to intervention. Specifically the identification of genes important in the development of specific brain regions or neuronal cell population that are abnormal in autism should be a target.
• Future functional and structural imaging studies need to include sufficient sample sizes in order to relate findings to participant characteristics such a as age, IQ, symptom profile etc. This has implications for the study of young children and the need for automated methods. b. Neuropsychology
Abnormalities in brain structure and function of individuals with autism affect behaviour through the abnormal development of
psychological functions. Three main psychological theories have been advanced that attempt to explain the nature of the
psychological symptoms of autism. These theories focus on social understanding (theory of mind - ToM), control of behaviour
(executive function - EF) and detail-focus (central coherence - CC). A substantial number of studies have demonstrated that
individuals with autism are impaired in theory of mind, or mentalising, abilities and more recently brain imaging studies have
explored the neural basis of these cognitive processes26,27. Psycho-educational interventions to circumvent mentalising
impairments have been piloted. Deficits in emotion recognition and response may be related to mentalising deficits, perhaps
sharing in common some social orienting or social-affective reward system impairment28. Within the executive, or action control
domain, individuals with autism have most difficulty with set shifting and inhibiting prepotent response, where working memory
and inhibitory control are simultaneously required29. Our understanding of ‘weak central coherence’ in autism is less well
developed, and findings from experimental studies more inconsistent, and further work to determine possible low-level perceptual
processing and attentional problems in order for a more specified account of the CC theory to be developed is required30. It is as
yet unclear how ToM deficits, problems in EF and the tendency for weak CC relate to each other, both online and over
development. Several studies have investigated multiple cognitive processes longitudinally in young samples of pre-school
children with autism and to combine neuropsychological studies with functional imaging studies of young children may allow us
to identify how differences develop over time in the organisation of brain systems that regulate social understanding, emotion
recognition, control of behaviour and perception28. Novel experimental methodologies such as eye tracking of a participant's gazewhilst watching a scene in a movie have allowed us to 'see the world through the eyes of individuals with autism31.
Priorities for future research:• Neuropsychological studies should include measures of more than one domain of function and explore individual differences in heterogeneous groups of individuals with autism and not aim solely to identify autism-pecific impairmentsin one domain of information processing.
• At both the cognitive and brain level autism is by definition a developmental disorder whose presentation changes over time. Combining sophisticated neuroimaging techniques with experimental neuropsychological methods in longitudinal designs will allow to us to examine how the organisation and function of different brain systems develops over time.
• Most studies have investigated cognition in isolation and few have attempted to establish associations between cognitive processing impairments and behaviour and adaptation, despite the fact that these are critical to identifying priority areas within the broad cognitive domain for future research and practice.
• In addition to mapping back from the psychological level to the brain system level, further attempts should be made in all areas of neuropsychological investigation to develop intervention strategies that will either allow individuals with autism to part-compensate for constitutional impairments or to develop alternative means to develop adaptive social and behavioural responses and understanding.
c. Behavioural symptoms
Individuals with autism show a range of behavioural difficulties. These can include aggressive outbursts and other challenging
behaviours and self-injurious behaviours, as well as rigid and ritualistic behaviours in relation to feeding and toileting32,33.
Although some behaviours such as stereotypic body movements (e.g. rocking) are common to individuals with autism and
individuals with severe developmental delay, others – in particular the difficulties encountered due to the preference for rigid
routines and rituals – are more specific to autism. There is also evidence that sleep disorders are more common for individuals
with autism34. The most common approaches to managing behavioural difficulties are behaviour modification procedures that
are based on the premise that these are learned behaviours maintained by operant contingencies. Studies have demonstrated a
moderate to high degree of success in reducing stereotyped motor movements, self-injury, or repetitive language35. Stimulus-
based approaches that involve altering antecedent events to problem behaviours are now more commonly employed.
Interventions developed from functional assessments appear to be more likely to result in significant behaviour reduction36.
There is evidence that dopaminergic, serotonergic and opiate drugs therapies can diminish repetitive behaviours disorders,
although significant potential adverse side-effects require close monitoring especially in individuals with low IQ and limited
communication abilities (see Psychopharmacology section).
Priorities for future research:• A large scale, epidemiologically-based study is required to determine the range, frequency and severity of behavioural difficulties in autism and their association with severity of autism and developmental delay.
• Further evidence is required to determine the efficacy of behavioural and psychopharmacological interventions for sleep problems, including the use of melatonin.
• Further research is required to determine the most effective combinations of behavioural and psychopharmacological interventions for severely challenging (aggressive and self-injurious) behaviours.
• The development of cognitive-behavioural interventions to manage rigid and inflexible behaviours in individuals with autism of average intelligence is required.
d. Associated medical and psychiatric conditions
Associated medical conditions have been found in between 6% to 10% of cases of autism, with higher figures for more
developmentally delayed individuals37. The most common disorders include the genetic conditions fragile X syndrome and
tuberous sclerosis, both accounting for approximately 1% to 2% of cases of autism. Other disorders identified in individuals
with autism include phenylketonuria (PKU), Prader-Willi and Angelman’s syndrome, neurofibromatosis, William’s syndrome and
cerebral palsy. Epilepsy occurs in one third of cases of autism with a bimodal onset distribution with peaks in early childhood
and later adolescence38. Subclinical seizures – identified using EEG – are also found in some individuals but the treatment
implications of these remain controversial. Recommendations for standard clinical assessment protocols have been developed39.
Individuals with autism are at increased risk of developing psychiatric disorders, most commonly depression and anxiety40,41.
Obsessive symptoms and tic disorders, Tourette's syndrome and hyperactivity are also associated with autism. Schizophrenia
and psychotic disorders appear not to be more common than in the general population. Ascertainment and referral bias, the
limitations of individuals with autism to report subjective mental state symptoms and the hierarchy rules adopted in the ICD
and DSM classification systems have limited the certainty and generalisability of these findings. The association betweenautism and psychiatric conditions has implications for aetiological models of autism at the genetic, neurophysiological andneurotransmitter/neurochemical levels. Both psychopharmacological and cognitive behavioural therapeutic approaches can playa role in the treatment of comorbid psychopathology (see Section 5). Priorities for future research:• Systematic examination of whether there is an aggregation of comorbidity between autism and other medical conditions beyond that associated with developmental delay would require considerable investigation of a large population cohort and the scientific yield might be only modest.
• Promising, specific associations – such as that found between early onset temporal lobe epilepsy (rather than the presence of temporal tubers per se) and autism in individuals with tuberous sclerosis – may yield greater potential breakthroughs in terms of understanding pathogenesis than large population-based investigations.
• Future studies should use appropriate methodologies to ascertain accurate rates of psychiatric disorders for adults and children, and for individuals with developmental delay and those of average intelligence.
• Clinical services should adopt more systematic approaches to the identification and recognition of psychiatric disorders, as well as developing and evaluating appropriate intervention strategies, both pharmacological and psychological.
• Studies should investigate how psychiatric disorders in individuals with autism are related to similar disorders in their relatives, including exploration of the potential shared neurobiology/neurochemical and genetic basis.
5. Interventions
a. Psychoeducational
There is increasing evidence that appropriately targeted intervention improves outcome in children with autism42. Evidence
includes a large number of individual case and small case series studies, providing support for behavioural and some
psychosocial interventions, targeting language, behaviour, play and social skills43,44,45. In contrast there is a relative paucity of
well-controlled empirical group evaluations of intervention programmes for children with autism and even fewer randomised
controlled trials42. The strongest evidence is for early, intensive behavioural interventions that have led to gains in IQ and
language ability46,47. Preliminary findings from ongoing studies using education-based approaches48 have also demonstrated
positive outcomes in terms of IQ gains and reductions in symptom severity. Intervention approaches that place an emphasis on
the development of non-verbal social-communicative skills have also provided promising data49,50. Direct empirical evidence that
early compared to later intervention has a specific positive benefit is not yet available. However, there is a consensus that
developmental principles support the notion of early intervention. Regardless of the underlying approach, there is a consensus
that, along with structure and an emphasis on developing communication skills, children with autism should be enrolled into
programmes as early as possible42,51,52.
Priorities for future research:Reports that followed recent expert meetings in the UK53 and USA54 set out research agendas to improve the evidence-base regarding psychoeducational interventions for children with autism. Amongst the priorities identified were:• One methodological issue is the choice of appropriate outcome measures, measures of treatment fidelity, identification of the necessary and effective elements (and intensity) of multi-modal treatment approaches, and identification of moderating and mediating variables to determine ‘what works for whom’ (and why).
• Although no design other than a randomised control trial can avoid bias resulting from unmeasured confounding factors, appropriate research strategies can take a variety of different forms and should relate to the stage of development of the evidence-base for any particular approach.
• It is essential to develop a framework within which randomised trials can be successfully conducted. This will involve consideration of patient preference trials (e.g. stratification of randomisation), access to alternative treatments that all offer something of perceived potential value to parents and children, and the development of effective strategies for persuading families of the importance of randomisation techniques. Cost-effectiveness, health economic and quality of life measures should be included in such trials.
• There is a need for increased research into psychosocial (e.g. social skills training) and psychotherapeutic (e.g. cognitive behaviour therapy) interventions for children, adolescents and adults with autism, in particular to increase social competence, integration and stability, and to decrease psychiatric morbidity.
b. Psychopharmacological
Although a wide range of psychopharmacological agents has been employed in the treatment of children and (more frequently)
adults with autism, for the most part they have not been used to treat the core features of social and communication
impairments. Rather, they are given to ameliorate associated symptomatology, including, poor attention and concentration,
morbid or unusual preoccupations, obsessive and compulsions or rituals, stereotyped behaviour and self-injury, excessiveanxiety, depressed mood, sleep problems and tics55,56. Amongst the best-supported drugs are those that target serotonergicfunctions (mood, obsessional and repetitive behaviours), including fluvoxamine and sertraline57,58. Methylphenidate andrisperidone have been shown to have some success in targeting hyperactivity and aggressive behaviour, although as with manyother drugs, side effects (in particular weight gain) have been noted59,60. Priorities for future research:• One important unresolved question is the use of psychostimulant medication to reduce inattention and overactivity in the face of clinical reports of increased agitation, aggression and insomnia. Large, double-blind, placebo-controlled trialsare required in order to determine optimum dosage and predictors of treatment response and adverse effects.
• Novel medications such as mood stabilisers (e.g. lithium) and beta-blockers require further investigation using pilot case series trial and open label trials to test potential effectiveness.
• Longer-term trials of atypical antipsychotics and SSRIs are required to extent positive findings from shorter-term trials and to gather longitudinal safety data.
• Specific efforts need to be made to develop and employ medications with fewer serious adverse side effects that cause a significant proportion of individuals to terminate medication.
c. Complementary approaches
Parents of children with autism often turn to alternative, or complementary, treatments (those that fall outside of mainstream,
statutory provision) in the hope of alleviating some of the symptoms of autism. Although much of the research published to
date suffers from methodological limitations, including lack of control, small sample size, lack of independent replication,
findings appear to fall into two groups. First, complementary treatments for which cases series and controlled and/or
uncontrolled trials provide some indication of positive benefits. Included in this group are vitamin B6 and magnesium
supplements61,62, melatonin for sleep disorders63 and casein and gluten-free diets64. Further study, where possible employing
blinded randomised controlled trials, of each of these interventions is warranted. The second group is a set of interventions that
have been sufficiently rigorously investigated and found to be ineffective. These are now de-recommended by most mainstream
professional bodies65,66. They include auditory integration training (AIT)65, facilitated communication66,68 and secretin67. Parents
need to be made aware that despite positive claims by proponents, anecdotal evidence of successes for individual children, and
the willingness of parents to take-up these treatments, many have little or no firm scientific evidence to support them.
Priorities for future research:• Further study of complementary treatments with some evidence of benefit (B6 and magnesium supplements, melatonin for sleep disorders, and casein and gluten-free diets) is warranted, where possible employing blinded randomised controlled trials.
• Studies should focus on target treatment outcomes that are directly empirically related to the proposed mechanism of effect (e.g. reduced hypersensitivity to noise in AIT; bowel problems in gluten- and casein-free diets). Such outcomes are more likelyto be revealing about the underlying mechanism of any demonstrated treatment effects and less likely to be spurious.
• Interventions should only be attempted under medical supervision to monitor potential adverse reactions.
6. Families and services
Relatively little research has been conducted into family function in families with a child with autism. The majority of the work
that has been conducted has studied issues regarding the diagnostic process, access to services and the psychological well-
being of parents and siblings of children with autism69,70. Guidelines for the development and organisation of service involved in
the diagnostic process and intended to ensure that the level of stress experienced by families is minimised have recently been
published in the UK12.
A recent report by the Public Health Institute of Scotland71 assessed the needs of individuals with autism and proposed that ‘ideal’ services for these individuals should aim to deliver:• Joint assessments, involving relevant agencies, services and professionals• Active involvement of the family• Early identification• Early intervention• Provision of a range of services – developed in a multi-agency and seamless way to ensure the range of needs of people • Sensitive management of the transition between childhood and adulthood• Individual needs of children and families should be addressed Overall, the Scottish review noted that there was a lack of specialists working with individuals with autism (see also USANational Research Council recommendations for training). Similarly, when reviewing services in the whole of the UK, Howlin72found that provisions for individuals with autism depended on where families lived and on what services and schools wereavailable in the particular area, rather than on research-based and needs-based evidence. Adults were particularly poorly served in terms of both diagnostic services and post-diagnostic support. A recent NationalAutistic Society survey73 found that many adults were not able to access the social services available to them. Some familieswere not being offered services as individuals with ‘high-functioning autism’ and Asperger syndrome were not considered‘disabled’. Half the adults in the sample were still living at home with their parents, often because the support available tothem outside of their home was inadequate. Many adults with high functioning autism or Asperger syndrome would have beenable to live independently if they received adequate support. The annual societal cost of individuals with autism in the UK hasbeen estimated to exceed £1 billion (based on a prevalence of 5 per 10,000), whilst the lifetime cost for a person with autismhas been estimated to be greater than £2.4 million74. Enhanced provision of services is likely to have cost benefits to society asa whole and the impact of new services should be tested via health economic modeling. Priorities for future research:• Little is known about family relations and family stress beyond childhood and further research with families with an adult with autism is urgently required.
• Few studies that have attempted to identify family protective factors or beneficial treatment and support approaches.
• Future work should identify child and family characteristics that make families most vulnerable and the appropriate health, education, social services and other support services to ameliorate dysfunction and poor coping.
• Further work on the economic costs to families and to society of autism are required in order to develop cost-benefit models of intervention programmes and support services.
• Very few services for adults with autism have been evaluated. Once an evidence-base for models of good practice exists, training schemes to disseminate such knowledge should be developed and evaluated.
References
1 Folstein SE & Rosen-Sheidley B (2001) Genetics of autism: Complex aetiology for a heterogeneous disorder. Nature Reviews Genetics, 2, 943-955.
2 Jones MB & Szatmari P (2002) A risk-factor model of epistatic interaction, focusing on autism. American Journal of Medical Genetics, 114, 558-565.
3 Lauritsen M & Ewald H (2001) The genetics of autism. Acta Psychiatrica Scandinavica, 103, 411-427.
4 Rodier PM & Hyman SL (1998) Early environmental factors in autism. Mental Retardation and Developmental Disabilities Research Reviews, 4,

Source: http://www.researchautism.net/publicfiles/charman_clare_2004.pdf

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