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Mental health in autistic adults: A rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective [1]

['Eleanor Curnow', 'School Of Health Sciences', 'Queen Margaret University', 'Edinburgh', 'United Kingdom', 'Marion Rutherford', 'Donald Maciver', 'Lorna Johnston', 'Additional Support For Learning Service', 'Communities']

Date: 2023-10

Abstract Background Autistic adults have high risk of mental ill-health and some available interventions have been associated with increased psychiatric diagnoses. Understanding prevalence of psychiatric diagnoses is important to inform the development of individualised treatment and support for autistic adults which have been identified as a research priority by the autistic community. Interventions require to be evaluated both in terms of effectiveness and regarding their acceptability to the autistic community. Objective This rapid review identified the prevalence of psychiatric disorders in autistic adults, then systematic reviews of interventions aimed at supporting autistic adults were examined. A rapid review of prevalence studies was completed concurrently with an umbrella review of interventions. Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines were followed, including protocol registration (PROSPERO#CRD42021283570). Data sources MEDLINE, CINAHL, PsycINFO, and Cochrane Database of Systematic Reviews. Study eligibility criteria English language; published 2011–2022; primary studies describing prevalence of psychiatric conditions in autistic adults; or systematic reviews evaluating interventions for autistic adults. Appraisal and synthesis Bias was assessed using the Prevalence Critical Appraisal Instrument and AMSTAR2. Prevalence was grouped according to psychiatric diagnosis. Interventions were grouped into pharmacological, employment, psychological or mixed therapies. Strength of evidence for interventions was assessed using GRADE (Grading of Recommendations, Assessment, Development and Evaluation). Autistic researchers within the team supported interpretation. Results Twenty prevalence studies were identified. Many included small sample sizes or failed to compare their sample group with the general population reducing validity. Prevalence of psychiatric diagnoses was variable with prevalence of any psychiatric diagnosis ranging from 15.4% to 79%. Heterogeneity was associated with age, diagnosis method, sampling methods, and country. Thirty-two systematic reviews of interventions were identified. Four reviews were high quality, four were moderate, five were low and nineteen critically low, indicating bias. Following synthesis, no intervention was rated as ‘evidence based.’ Acceptability of interventions to autistic adults and priorities of autistic adults were often not considered. Conclusions There is some understanding of the scope of mental ill-health in autism, but interventions are not tailored to the needs of autistic adults, not evidence based, and may focus on promoting neurotypical behaviours rather than the priorities of autistic people.

Citation: Curnow E, Rutherford M, Maciver D, Johnston L, Prior S, Boilson M, et al. (2023) Mental health in autistic adults: A rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective. PLoS ONE 18(7): e0288275. https://doi.org/10.1371/journal.pone.0288275 Editor: Weihua YUE, Peking University, Institute of Mental Health, CHINA Received: July 15, 2022; Accepted: June 23, 2023; Published: July 13, 2023 Copyright: © 2023 Curnow et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability: All relevant data are within the paper and its supporting information files Funding: This study was supported by funding from Scottish Government. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Competing interests: The authors have declared that no competing interests exist.

Introduction Mental ill-health is a common experience for autistic adults [1]. The recent Lancet Commission on autism research described a ‘deep scarcity’ of evidence regarding interventions and supports for this population [2, 3]. Considering the recent increase in interest in outcomes for autistic adults, research and policy advancements in this field are urgently required. There is a known increased risk for experiencing mental ill-health in autism this varies widely in terms of reported prevalence [3]. Estimated prevalence of autism in adults aged 16–64 years in UK is 2.9% [95% CI 2.7, 3.1] [4]. Prevalence of autism is 3.46 times higher for boys [5]. Autistic people have a wide range of needs which vary depending on environment, and co-occurrence of intellectual or physical factors, sensory factors, co-occurring neurodevelopmental differences, intellectual disabilities, or other psychiatric diagnoses [6–8]. Autistic people, and people with intellectual disabilities have more mental and physical needs than other people [9], and research indicates that needs prevalence will be even higher for people with co-occurring autism and intellectual disability [8]. Worldwide prevalence of psychiatric disorders is estimated at 13%, including anxiety disorders (4.1%), depressive disorders (3.8%), bipolar disorders (0.5%), schizophrenia (0.3%), and eating disorders (0.2%) [10]. In Scotland, census data indicates that 5.4% of adults aged 16–64 years (4.6% for people aged 65+) without co-occurring intellectual disabilities and autism reported mental ill-health which had lasted or was expected to last at least 12 months [8]. Whilst there has been previous consideration of prevalence of psychiatric disorders in autistic populations [11], there is a need to distinguish between adult and child populations. Further consideration of the measurement tools used with autistic adults is also required to ensure that they are validated for this population [12]. The significance of co-occurring mental ill-health was identified in research which demonstrated that that up to 66% of autistic adults without intellectual disability have contemplated suicide compared to 17% of non-autistic adults, and research has linked this to social camouflaging [13]. Mental health has been identified as a top priority research area for autistic adults [14]. Mental health is a state of well-being in which an individual realises his or her own abilities, can cope with the normal stresses of life, can work productively and is able to make a contribution to his or her community [15]. As understanding of mental health in autism evolves, it is also recognised that personal factors cannot be separated from environmental factors. Attitudes, understanding and expectations of those around an individual and adaptations in society and everyday environments are fundamental to supporting meaningful participation and positive mental health in autism [16]. For the purposes of this review a psychiatric disorder is defined as a mental illness diagnosed by a mental health professional according to diagnostic criteria [17]. Relevant diagnoses were identified according to search terms and strategies described by Cochrane Common Mental Disorders [18]. There is limited understanding of effective interventions for supporting mental health in autistic adults [2]. A recent umbrella review found that research evidence did not support one best intervention for autism in children, and that there was a concerning lack of consideration of adverse effects of interventions [19]. Previous research has focussed on children and adolescents, often evaluating interventions designed to reduce or mask behaviours associated with autism [20] but there is now recognition of the stress and detriment such interventions can create [20, 21]. The ‘neurodiversity’ movement considers autism and other neurodevelopmental conditions as neurological variation, rather than disorders requiring treatment [2, 22, 23], Therefore, autism is a difference not a deficit, which brings into question the use of interventions which seek to ‘cure, fix or normalise’ [2]. This movement has provided tools to critique research and to consider what is important in research and practice for autistic adults [16, 23, 24]. This has led to the development of research priorities which focus on the best interests of autistic people and recognise that the inclusion of both autistic people and non-autistic people in research processes is of key importance [22]. Although, there is a need for progress as only 5% of funded autism research included autistic adults [25]. Historical research must be reviewed through a contemporary lens which considers the acceptability of terminology, interventions, supports and outcomes to the autistic community [23]. Research indicates that autistic people prioritise outcomes associated with quality of life, reduction in anxiety, depression or sleep related problems, social well-being, interpersonal relationships, and increased participation in activities of daily living, community, and work [24]. These measures are key to evidence-based practice which requires the integration of the best available research with clinical expertise and the patient’s unique values and circumstances [26, 27]. Evidence based practice requires that health care is not only based upon the best available, valid, and current evidence as defined by GRADE (Grading of Recommendations, Assessment, Development and Evaluation) [28], but also that decisions are made by those receiving care and informed by those providing care [27, 29]. Strong GRADE evidence indicates all or almost all people would choose that intervention [30]. This umbrella review of interventions will therefore consider the results of studies not only in terms of their effectiveness, but also regarding the acceptability of the interventions to the autistic community [23]. The prevalence of psychiatric disorders in autistic adults will be explored through rapid review of published literature. This knowledge synthesis will be rigorous and transparent but will be accelerated by resource-efficient methods including limiting the number of databases which will be searched for evidence. Handsearching, and forward and backward citation searches will also not be undertaken [31]. Grey literature, and literature not published in English will not be considered. Article screening will be reviewed by two authors in 20% of publications. An umbrella review facilitates a synthesis and appraisal of evidence across a broader topic area than can usually be achieved through an individual systematic review [32]. In the current research, the aim was to incorporate these key viewpoints, integrating perspectives on evidence-based practice, and views from people with lived experience, experts, and practitioners. These key ideas are summarised below. Objectives We conducted a rapid review of existing studies providing quantitative data on the prevalence of psychiatric diagnoses in autistic adults. We also conducted an umbrella review of systematic reviews of interventions for autistic adults [32]. In both cases following Preferred Reporting Items for Systematic review and Meta-analyses (PRISMA) guidelines [33] (S1 Checklist). Our research was commissioned to inform an adult autism government policy review in Scotland which aimed to set priorities which are driven by autistic people. Considering these principles, our objectives for this review focussed on autistic adults were to: Establish prevalence of psychiatric diagnoses and explore associated heterogeneity. Investigate evidence for effectiveness of interventions. Consider the acceptability of interventions and research in this field with reference to the neurodiversity paradigm. Research questions. How prevalent are psychiatric diagnoses in autistic adults? Which factors are associated with heterogeneity of prevalence of psychiatric diagnoses in autistic adults? Which interventions are effective in treating autistic adults? Do available interventions meet the needs and priorities of autistic adults?

Methods The systematic review process was undertaken in two parts focussing on (a) primary prevalence data describing the occurrence of psychiatric diagnoses in autistic adults; and (b) umbrella reviews of interventions. This was a rapid review, and to reduce the time required limited databases were included in the searches, and the umbrella review of interventions considered systematic reviews only, due to their higher quality research design [34, 35]. Search date was restricted to 10 years as this is a valid and reliable approach for rapid reviews [36]. The protocol was registered a priori (PROSPERO #CRD42021283570). Inclusion criteria For both reviews, studies were included if: a) participants were autistic (however defined in the study which may include self-diagnosis or clinical diagnosis) b) participants were ≥18 years of age (or the mean age of the participant group ≥18 years) c) they were reported in English; d) they were published from 01/2011, AND For the investigation of prevalence of psychiatric diagnoses in autistic adults; studies were included if they reported primary prevalence data for occurrence of psychiatric diagnoses experienced by autistic adults.

OR For the umbrella review of interventions; studies were included if a) they considered interventions for autistic adults; b) they were systematic reviews. Search strategy A systematic search of MEDLINE, CINAHL (Cumulative Index to Nursing and Allied Health Literature) and PsycINFO databases was conducted in November 2022, through EBSCOhost to identify quantitative studies of psychiatric diagnoses in autistic adults using Medical Subject Headings (MeSH) and keywords. To identify systematic reviews of interventions, a systematic search of CINAHL, MEDLINE, PsycINFO, and Cochrane Database of Systematic Reviews was conducted in November 2022. Databases were selected from available resources following current guidance [37], and through discussion with the university research librarian. CENTRAL, MEDLINE and Embase (if access to Embase is available to the review team) are recommended for systematic reviews [37–39]. Embase was not available to the research team. Cochrane Database of Systematic Reviews was included as a major repository of systematic reviews [32]. Trials searches of JBI Database of Systematic Reviews and Implementation Reports did not reveal any additional relevant citations and was therefore excluded. Lists of search terms are included (S1 File). Study selection Retrieved citations were uploaded to Covidence [40]. Following removal of duplicates, titles and abstracts of the returned articles were examined blind by two researchers (EC, NJ) with irrelevant titles excluded. Full text articles were then reviewed against inclusion criteria (EC), with 20% examined by a second reviewer (NJ). Disagreements were resolved through discussion, and reference to a third party (MR) was not required. Inter-rater agreement was assessed using Cohens Kappa. Data extraction Data extraction sheets were developed and piloted by two researchers. For prevalence, extracted data included study details, setting, sample size, age, method of diagnosis, prevalence data for: any psychiatric diagnosis; anxiety; depression; psychosis; schizophrenia; obsessive-compulsive disorder; attention deficit hyperactivity disorder (ADHD); bipolar disorder; eating disorder. For interventions, extracted data included study details, methodology, aims, population age and gender, context, inclusion/exclusion criteria, intervention, psychiatric diagnosis, autism diagnosis, sample size, subgroups, views of autistic adults, concerns re acceptability of intervention, conclusions, recommendations, funding sources. Data extraction was conducted by one of the research team members, then reviewed by the research team as a group, inconsistencies were resolved through discussion. Evaluation of risk of bias Studies included in the prevalence review were assessed for risk of bias using the Prevalence Critical Appraisal Instrument [41]. This assessment focusses on a) method of identification or diagnosis of the relevant condition, and b) sampling of the population, as these are issues particularly relevant to prevalence. Studies included in the intervention review were assessed for risk of bias using AMSTAR2 [42]. This tool identifies domains critical to integrity of the study, including registration of protocol (Q2), adequacy of literature search (Q4), justification for excluding studies (Q7), risk of bias in inclusion of studies (Q9), selection of meta-analysis methods (Q11), consideration of risk of bias in interpretation of results (Q13), consideration of publication bias (Q15). Studies are rated as high, moderate, low, or critically low according to the number of weaknesses identified [42]. Risk of bias was assessed by one member of the research team, then reviewed by another. Synthesis methods For synthesis of prevalence, studies were pooled according to psychiatric diagnosis. For synthesis of interventions, results were grouped into pharmacological interventions; employment focussed interventions; psychological therapies; and mixed intervention or approaches. Within these broad categories, a list of detailed intervention sub-categories was identified. Next, evaluation of the strength of evidence for each sub-category was completed based upon the following criteria adapted from GRADE [28] from ‘not recommended- to ‘evidence based’ (Table 1). PPT PowerPoint slide

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TIFF original image Download: Table 1. Research recommendation classification. https://doi.org/10.1371/journal.pone.0288275.t001 Interventions were evaluated against the stated adapted GRADE criteria to determine not only evidence of effectiveness, but also evidence of negative consequences or harm. This involved consideration of reported benefit for each intervention type. An exploratory approach was used to review adverse outcomes identified during the conduct of the review. This opportunistic approach considers only the reported adverse effects or outcomes that may be associated with the interventions being investigated [43]. In considering negative consequences or harm associated with interventions we included criteria adapted from clinical guidelines and neurodiversity affirming practice. Specifically, we did not recommend: Interventions which focussed on the reduction of core features of autism are associated with harmful consequences and contradict current clinical guidelines [44, 45]. Core features include qualitative differences and impairments in reciprocal social interaction and social communication, restricted interests and activities, and rigid and repetitive behaviours [46].

Interventions which contradicted current clinical guidelines [44, 46].

Interventions associated with adverse events or adverse outcomes [43].

Interventions which attempt to ‘cure, fix or normalise’ autistic people [2, 47] due to their negative impact upon quality of life [29].

Interventions which target outcomes contradictory to the identified priorities of the autistic community [14, 24, 48–50]. The research team was made up of autistic and non-autistic professionals within speech and language therapy, psychology, psychiatry, occupational therapy, and teaching fields. Members of the team had research experience, and experience working with autistic people in clinical and education settings. As integrated members of the research team, autistic researchers contributed to the planning and design of this research study, and decision-making related to study outcomes alongside non-autistic colleagues. All team members held professional roles and contributed expertise to the study thus possibly reducing issues associated with power hierarchy sometimes found in autism research [51]. Arising disagreements concerning the classification of evidence were resolved through team discussion with reference to research recommendation classification (Table 1) and criteria regarding negative consequences or harm listed above until agreement was achieved. Inter-rater reliability was not recorded for this process.

Discussion Improved understanding of the relationship between individual characteristics and mental health in autistic adults is required to target interventions. Our review of studies exploring the occurrence of mental ill-health in autistic adults revealed wide variation in prevalence associated with means of diagnosis, age, co-morbidity, and country of residence. Study populations included higher proportions of male participants reflecting the historical gender imbalance in autism diagnosis. We identified prevalence of psychiatric diagnoses in autistic adults. Attention-deficit hyperactivity disorder (2%-33%); Depression (10%-54%); and Anxiety (10%-54%) were most common. Population-based studies reflecting lifetime diagnoses identified higher prevalence than current diagnosis studies. Prevalence of mental health related diagnoses was higher in studies which used clinical samples. Most studies included smaller samples. Clinical studies may mean greater chance of clinician and service contact, raising chance of diagnosis for individuals. Diagnoses in clinical populations are also more likely to conform to identified diagnostic criteria. This rapid review supports previous findings that age was associated with heterogeneity in prevalence of psychiatric diagnoses [1]. Autistic people over the age of 65 were more likely to report a lifetime mental health condition than autistic people aged 55–65, although this pattern was not found when examining current diagnoses [63] possibly due to additional time available to experience mental ill-health. Age related differences may be due to changes in diagnosis patterns and criteria over time, or to the reduced life expectancy of autistic people [59, 60]. Additionally, autistic people with intellectual disability are more likely to experience mental ill-health, than people with either intellectual disability or autism alone [8]. Prevalence of psychiatric diagnoses in autistic people also appears higher for people living in USA than UK [61, 62]. Prevalence may also be influenced by the lack of diagnostic tools validated for the autistic community, and which may be unable to discriminate mental ill-health from autistic features resulting in diagnostic inaccuracy or overshadowing [12, 60]. Self-reporting, and the varying ability to report internal emotional experiences, may also impact diagnostic accuracy [12]. The use of resource efficient methodologies may have reduced the number of prevalence studies revealed during this rapid review [31]. However, search strategies focussed on the identification of research aimed at identifying the prevalence of psychiatric diagnoses in autistic adult population rather than in small purposive samples. The sampling of the population within prevalence studies is particularly important [52]. Therefore, studies which examined small purposive samples which were not compared with the wider population, were less likely to be representative of the general population. The umbrella review revealed evidence across 31 systematic reviews relating to interventions for autistic adults, but no intervention was rated ‘evidence based’ and several interventions were ‘not recommended.’ A key issue was acceptability to the autistic community. Reviews mostly failed to consider the views of autistic adults or include autistic adults in planning or conducting the research. One systematic review, exceptionally, included autistic individuals and families who checked results, recommendations, and acceptability of interventions [71]. Research rarely focussed on the identified priorities of the autistic community which include interventions focussed on skills development and training from childhood; employment; physical health, wellbeing; mental health; and expertise, coordination, availability, and accessibility of lifespan services [48]. It should be noted that these priorities may not reflect the views autistic people who are minimally verbal. Despite the availability of knowledge on priorities according to autistic people, the identified research mostly reflected changes to the autistic person including the development of social skills, and the reduction of ‘symptoms’ associated with autism or behaviours deemed undesirable. Such behavioural and psychological interventions have been criticised for aiming to remediate aspects of autism resulting in stress or harm for autistic people rather than focussing on outcomes identified as meaningful [49]. Reviewed studies incorporated a wide range of outcomes which were measured using heterogeneous tools with little discussion of their relevance to priorities identified by the autistic community. This has implications for the interpretation of the results, as measured outcomes may or may not be meaningful to autistic people and reflects the limited range of assessments validated for use with autistic adults [12]. Employment was considered in many studies and has been identified as a research priority by the autism community [48] as autistic adults are often excluded from participating in integrated competitive employment. However, studies often failed to report outcomes directly reflecting employment status following intervention [104], instead reporting outcomes such as improvement in interview skills or cognition, which may or may not support people in achieving employment. This may be due to limited follow-up after the intervention concluded. Other studies examined complex work programmes making it difficult to identify the ‘effective’ components. Implications Further high-quality research must be designed with the autistic community focussing on their needs and priorities. Improved understanding of processes for matching individual needs and preferences with evidence-based interventions is required [3, 50]. Interventions offered to autistic people should take account of the person’s preferences, needs and communication differences, and the impact these may have upon mental health [105]. Research must consider the benefits of interventions which focus on individual communication, sensory or thinking preferences. Interventions which consider adaptations to the environment must also be prioritised [50]. Staff and organisations, including health staff, adult mental health practitioners, and human resources/employment specialists, should consider what support can be offered in workplace environments [50, 71]. There are significant training needs in the workplace. This includes training needs of autistic people and non-autistic people. Reviews particularly identified transition into employment as a key time requiring focussed attention [14]. The findings of this review suggest that practitioners and organisations who support autistic adults with their mental health should prioritise individual needs and consider focussing on approaches to building self-understanding of individual neurodevelopmental profiles before (or in conjunction with) talking therapies [71]. Ideally, practitioners should be part of a multi-disciplinary team and should not only have training in approaches or therapies but have experience in working with autistic people, assessing communication support needs, and understand alternative supports and adaptations for autism [48, 49, 71]. Intervention decisions should take account of autistic people’s individual preferences and needs, their day-to-day environments, neurodevelopmental and particularly communication differences, and the way sensory, communication or thinking preferences might impact on their mental health [14, 49]. Such approaches could address the current tendency to focus on people’s difficulties rather than consideration of environmental supports and individual needs [49, 50]. Inclusion of autistic people Autistic researchers were an integral part of the research team which conducted this review and were included throughout the rapid review and umbrella review process. The team provided critique of evidence for interventions which could potentially be detrimental to autistic people, including encouraging the expression of neurotypical behaviours which is a form of masking. Papers were examined for the inclusion of autistic researchers, and for views expressed by autistic people on the acceptability of interventions. Limitations Rapid review methodologies were used [34]; including date and language restrictions, limiting the number of databases that were searched, and focussing on systematic reviews of intervention studies. The research team did not have access to EMBASE which is recommended for intervention reviews where available to researchers [37]. While the review team completed a comprehensive search using recognised methods no forward or backward citation search, hand searching or follow up with authors was completed to identify missing studies. These methods and the selection of databases used in the search may have contributed to the low number of studies identified. The intervention research displayed very high heterogeneity across included studies, interventions used, and outcome measures applied. An exploratory approach to reviewing adverse effects considers only reported information, and is therefore restricted by incomplete reporting, or inadequate monitoring of adverse outcomes. Separate searches for adverse effects of interventions were not conducted and therefore results are unlikely to be comprehensive [43]. Retrieved studies did not declare that they did not include autistic researchers and research teams may therefore have included autistic researchers. Autistic researchers were integral to the research team conducting this study and their views were not recorded separately from other research team members. Autistic research team members have professional backgrounds within research, health and education and are therefore not representative of all sections of the autistic community.

Conclusions There is limited understanding of mental ill-health and how this can impact quality of life for autistic people despite evidence indicating increased prevalence. There is a need for diagnostic tools and outcome measures to be validated for use with this population. Future research should fully include autistic people at every stage and focus on priorities identified by the autistic population.

Acknowledgments Ethical approval Queen Margaret University Research Ethics Panel do not require researchers undertaking systematic review to apply for ethical approval.

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