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Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and post-diagnostic support services. More than 55% in all groups experienced most of the recommended features for diag...
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Context 1
... as shown in Fig. 2; Table 3, among each of the three respondent groups (for professionals, considering 'Standard practice' and 'Not standard practice, but often considered' responses combined) more than 45% experienced each of three recommended features of the autism diagnostic evaluation for adults (i.e., a multidisciplinary team evaluation; a close person was asked about the adult's symptoms; questions regarding self-harm or harm to others), and over 70% of respondents in each group (considering 'Standard practice' and 'Not standard practice, but often considered' professional responses combined) experienced each of seven recommended features (i.e., evaluation of functioning in different settings; physical or mental problems; developmental problems; language/communication difficulties; sensory problems, evaluation of behavioral problems; assessment of adult's development-the last two by carers and professionals). One recommended feature (evaluation of abuse) was experienced by fewer autistic adults or carers (about 40%) than professionals (71% answered that it was a part of the standard routine practice or not standard practice, but often considered). ...Context 2
... tests, a NOT recommended feature, was reported to be a standard routine practice or not standard but often considered for 48% of professionals. In addition, more than 20% of professionals said that they did not know if the NOT recommended features were generally part of the standard diagnostic evaluation for autism (Table 3; Fig. 2). Carers of autistic adults with high/ partial independence and carers of adults with high need of support reported similar experiences with the NOT recommended features, whereas, among those reporting having experienced the NOT recommended features, more autistic males were present (neuroimaging, 9%; genetic tests, 10%) than females (neuroimaging, 4%; genetic tests, 4%) (Supplementary Material 8). ...Context 3
... as shown in Fig. 2; Table 3, among each of the three respondent groups (for professionals, considering 'Standard practice' and 'Not standard practice, but often considered' responses combined) more than 45% experienced each of three recommended features of the autism diagnostic evaluation for adults (i.e., a multidisciplinary team evaluation; a close person was asked about the adult's symptoms; questions regarding self-harm or harm to others), and over 70% of respondents in each group (considering 'Standard practice' and 'Not standard practice, but often considered' professional responses combined) experienced each of seven recommended features (i.e., evaluation of functioning in different settings; physical or mental problems; developmental problems; language/communication difficulties; sensory problems, evaluation of behavioral problems; assessment of adult's development-the last two by carers and professionals). One recommended feature (evaluation of abuse) was experienced by fewer autistic adults or carers (about 40%) than professionals (71% answered that it was a part of the standard routine practice or not standard practice, but often considered). ...Context 4
... tests, a NOT recommended feature, was reported to be a standard routine practice or not standard but often considered for 48% of professionals. In addition, more than 20% of professionals said that they did not know if the NOT recommended features were generally part of the standard diagnostic evaluation for autism (Table 3; Fig. 2). Carers of autistic adults with high/ partial independence and carers of adults with high need of support reported similar experiences with the NOT recommended features, whereas, among those reporting having experienced the NOT recommended features, more autistic males were present (neuroimaging, 9%; genetic tests, 10%) than females (neuroimaging, 4%; genetic tests, 4%) (Supplementary Material 8). ...Citations
... L'ASDEU (Scattoni et al., 2021) l'échange de connaissances, des attitudes des personnes reçues quant à la problématique abordée. ...
... Les différents besoins relevés dans la littérature mais également dans le cadre de nos propres travaux nous conduisent à envisager le développement d'une intervention psychoéducative comme une réponse adéquate à certains des besoins évoqués par les personnes concernées, comme d'être accompagné·e suite au diagnostic (e.g. Bureau & Clément, 2023;Scattoni et al., 2021). Cette intervention ne doit toutefois pas se résumer à simplement donner de l'information sur l'autisme, mais bien à soutenir l'intégration de l'information du diagnostic, notamment lorsque celui-ci est tardif, comme le soulignent Crowson et al. (2023). ...
... L'utilisation d'instruments standardisés est toutefois généralisée dans les centres spécialisés, bien que leur validité et leur spécificité quant au diagnostic à l'âge adulte puissent poser question(Conner et al., 2019 ; Jones et al., 2023 ;Picot et al., 2021). L'évaluation diagnostique est d'ailleurs l'étape du processus qui est la plus conforme aux recommandations de bonnes pratiques, selon les résultats d'une grande étude menée en Europe(Scattoni et al., 2021). ...
Ce travail se veut une exploration de l’influence de différents environnements, par le modèle de Bronfenbrenner, et de leurs interactions sur l’expérience de l’adulte autiste sans trouble du développement intellectuel associé et par extension de sa conception clinique, à travers : a) l’étude des différents modèles de l’autisme et de leur influence sur les conceptionscliniques et in fine sur les individus ; b) l’exemple de l’expérience du camouflage autistique et de la stigmatisation pour incarner l’influence de différents environnements sur l’individu ; c) l’étude de l’expérience et des besoins identifiés à la
suite de la réception d’un diagnostic à l’âge adulte et enfin d) la présentation du développement et du protocole d’évaluation d’une intervention de psychoéducation, le programme CoMPPAA. Ces éléments permettent notamment d’appuyer l’importance du développement de modèles de recherche participative pour améliorer la validité écologique de la recherche sur l’autisme.
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This work is an exploration of environmental influence (using Bronfenbrenner’s framework) and their interactions on the experience of autistic adults without intellectual disability and by extension of the clinical conceptualisation of autism,
via : a) the study of different models of autism and their influence on clinical frameworks as well as on autistic individuals ; b) using the examples of autistic masking and stigmatisation to embody the dynamic influences of the environnement
on the individual ; c) considering the experience of receiving an autism diagnosis as an adult as well as needs identified following the diagnosis and d) the development and evaluation protocol of a psychoeducational intervention (the CoMPPAA program). This allows for the consideration of participatory research models as crucial to enhance the
ecological validty of autism research.
... Autistic adults and professionals have expressed dissatisfaction with the assessment and diagnosis process in the United Kingdom (9,10) and have identified this as a priority for further research (11). Particular challenges facing autism identification in adulthood include: the paucity of adult-specific screening and diagnostic tools; vague and inconsistent routes for accessing diagnosis; possible reduction of outward symptom severity and visibility of co-occurring conditions later in life; poor recall of early-life developmental history; cultural factors that may mask autistic signs; the absence of key professionals; the tendency of professionals to focus on negative rather than positive aspects of autism; lack of rapport with professionals; tensions between professionals and autistic people regarding who is the expert; lack of clarity surrounding the diagnostic process; inappropriate spaces for assessment to take place; and limited experience and training in adult autism of many professionals (2,7,9,10,(12)(13)(14). Research has found evidence that some autistic people felt the diagnostic experience was not age or gender appropriate (10, 15), did not consider sensory preferences, that assessment took place in an inappropriate environment, information provided before the assessment was limited (10) and there was inadequate post-diagnosis or long-term support (13). ...
... Particular challenges facing autism identification in adulthood include: the paucity of adult-specific screening and diagnostic tools; vague and inconsistent routes for accessing diagnosis; possible reduction of outward symptom severity and visibility of co-occurring conditions later in life; poor recall of early-life developmental history; cultural factors that may mask autistic signs; the absence of key professionals; the tendency of professionals to focus on negative rather than positive aspects of autism; lack of rapport with professionals; tensions between professionals and autistic people regarding who is the expert; lack of clarity surrounding the diagnostic process; inappropriate spaces for assessment to take place; and limited experience and training in adult autism of many professionals (2,7,9,10,(12)(13)(14). Research has found evidence that some autistic people felt the diagnostic experience was not age or gender appropriate (10, 15), did not consider sensory preferences, that assessment took place in an inappropriate environment, information provided before the assessment was limited (10) and there was inadequate post-diagnosis or long-term support (13). Some people have even found receiving an autism diagnosis to be a traumatic experience (16). ...
... The life experiences of the autistic adult should be listened to and validated throughout the assessment process (40). However, evidence suggests that the experience of clinical diagnostic assessment is not always positive (1,9,13). ...
Services for the assessment and diagnosis of autism in adults have been widely criticized and there is an identified need for further research in this field. There is a call for diagnostic services to become more accessible, person-centered, neurodiversity affirming, and respectful. There is a need for workforce development which will increase capacity for diagnostic assessment and support for adults. ADOS-2 is a gold-standard diagnostic assessment tool for autism recommended in clinical guidelines. However, diagnostic procedures such as the ADOS-2 are rooted in the medical model and do not always sit comfortably alongside the neurodiversity paradigm or preferences of the autistic community. Training and educational materials need to account for the differences between these approaches and support clinicians to provide services which meet the needs of the adults they serve. The National Autism Implementation Team worked alongside ADOS-2 training providers to support clinicians in Scotland, to provide effective and respectful diagnostic assessment. The team engaged with clinicians who had attended ADOS training to identify areas of uncertainty or concern. Training materials were developed to support ADOS assessors to incorporate key principles including “nothing about us without us”; “difference not deficit”; “environment first”; “diagnosis matters,” “language and mindsets matter”; and “a neurodevelopmental lens,” to support the provision of neurodiversity affirming assessment practice. The National Autism Implementation Team also provided examples of actions which can be undertaken by clinicians to improve the assessment experience for those seeking a diagnosis. Training materials are based on research evidence, clinical experience, and the needs and wishes of autistic people.
... with a slightly greater (i.e., 0.7 %) prevalence among highly industrialized countries [4]. The neurodevelopmental, life-long nature of ASD along with associated symptoms and functional consequences are increasingly being recognized [5]. ...
The aim of this study is to determine the functioning of adults with autism spectrum disorders (ASDs) diagnosed in childhood and depression and burnout levels among their parents. A total of
261 adults with ASDs and their parents were recruited for the study. Both parents completed the Beck Depression and Maslach Burnout Inventories and reported the functioning of their adult
offspring with ASDs. Only 5.4 % of our sample reported “good” or “very good” outcomes. The most common psychiatric comorbidities were intellectual disabilities and attention-deficit/
hyperactivity disorder. Maternal burnout and depression scores were significantly elevated compared to those of fathers. There is an undeniable urgent need for more research to identify the
needs of adults and families suffering from ASD. Modifications for those with ASD may have to be made for support in workplaces, achieving driving licenses, using public transportation and attendance at tertiary education.
... Delobel-Ayoub et al., 2020). While a large survey on autism diagnoses was conducted in Europe (Scattoni et al., 2021), only a small number (n = 48) of French people participated. To date, there is no widespread study on autism prevalence in France, but local health authorities estimate the national prevalence to be around 0.9%-1.2%, ...
... A few potential factors contributing to delay in accessing diagnostic procedures have been identified: (1) camouflaging (a collection of behaviors to "hide" autistic characteristics and "pass" as non-autistic) (Cage & Troxell-Whitman, 2019), which can delay identification and referral (Rødgaard et al., 2021); (2) an increased difficulty to access health care (e.g. needing to use the phone to book an appointment) (Dern & Sappok, 2016); and (3) lack of properly trained or identifiable services and/or professionals (Scattoni et al., 2021). Adults who suspect they may be autistic must also face the fear of not being taken seriously by health care providers (Lewis, 2017) and long wait times. ...
... Such influence in discourse and training might have an impact on the overall diagnostic experience, especially those of autistic adults in France. While specialized centers and professionals follow international guidelines when it comes to the diagnosis assessment in itself (Scattoni et al., 2021), identification and referral can be greatly impacted by the overall presence of psychoanalytical training, sometimes leading to dramatic consequences, such as a mother losing custody of her children because of her persistence in trying to obtain a diagnosis for them (Chrisafis, 2018). ...
Research on how adults react to receiving an autism diagnosis is focused on the United States or the United Kingdom context even though cultural differences might have an impact on these experiences. Few interventions for autistic adults exist, and when they do, they are often described as inappropriate. Our study aimed to explore the experiences of French adults diagnosed with autism and the needs they identified following this diagnosis as well as to ask them directly what type of interventions they would have wanted. We conducted semi-structured interviews with 12 adults and identified three recurring themes: (1) reactions to the diagnosis, (2) relations with others and society, and (3) wants and needs. Results indicated that some experiences were congruent with existing Anglophone literature, while others were heavily influenced by the specific cultural context. Our participants also highlighted a number of unmet needs and offered suggestions for adequate interventions.
Lay abstract
Adults receiving an autism diagnosis might not react the same depending on their countries or cultures. We also know that autistic people are rarely asked what they think would be best for them following this diagnosis. In this study, we asked 12 French autistic adults about their experiences of receiving an autism diagnosis as well as what they thought might be useful afterwards. Overall, we found that some experiences were similar to experiences related by English or American participants, but some were specific to the French culture, suggesting that such research should expand into new territories and cultures, especially non-European ones. Our participants also had quite a few ideas as to what would be useful for people in the same situation. Some of the suggestions can be put into action by peers and professionals alike, while others are wishes relating to how our participants would like society to behave toward them and people like them, for example. This article allows for a better comprehension of how cultural differences can impact the experience of receiving an autism diagnosis as an adult and provides some insight into what these adults want and desire following such a diagnosis.
... Although specific practice guidelines are available [11,12], autistic individuals usually experience inadequate access to healthcare, poor diagnostic and post-diagnostic support, and inefficiencies in intervention, residential, education, employment, financial, and social support services [13][14][15][16][17][18][19][20][21]. The reasons for users' perceptions and experiences of inefficiencies may be due to the lack of a single care system that delivers services across all domains Int. J. Mol. ...
An integrated plan within a defined care pathway for the diagnosis, continuative interventions, and periodic redefinition of care of autistic people is essential for better outcomes. Challenges include delivering services across all domains or life stages and effective coordination between health/social care providers and services. Further, in the ‘real world’, service provision varies greatly, and in many settings is significantly weighted towards diagnosis and children’s services rather than treatment and support or adult care. This study aims to identify existing care pathways for Autism Spectrum Disorder (ASD) from referral to care management after diagnosis. The study reviewed the international literature in PubMed and PsycInfo databases and collected information on care for autistic individuals from the Autism Spectrum Disorders in Europe (ASDEU) project partners. The study found that published data mainly focused on specific components of care pathways rather than an integrated and coordinated plan of care and legislative indications. They should be aimed at facilitating access to the services for support and the inclusiveness of autistic individuals. Given the need for care addressing the complex and heterogeneous nature of ASD, effective coordination between different health/social care providers and services is essential. It is also suggested that research priority should be given to the identification of an integrated care pathway ‘model’ centered around case management, individualization, facilitation, support, continuous training and updating, and quality management.
... In most countries, adults seeking an autism assessment and diagnosis face severe challenges, and the individual is expected to initiate and navigate the process 24 . Although there are published guidelines 7,294 , major differences exist between guidelines and actual experience 295 . Adults seeking diagnosis report lengthy waiting times and prohibitive costs 2,24 , and encounter clinicians who lack a nuanced understanding of autism 75,174 . ...
There is little comprehensive research into autistic adulthood, and even less into the services and supports that are most likely to foster flourishing adult autistic lives. This limited research is partly because autism is largely conceived as a condition of childhood, but this focus of research has also resulted from the orthodox scientific approach to autism, which conceptualizes autistic experience almost entirely as a series of biologically derived functional deficits. Approaching autism in this way severely limits what is known about this neurodevelopmental difference, how research is conducted and the services and supports available. In this Review, we adopt an alternative research strategy: we apply Martha Nussbaum’s capabilities approach, which focuses on ten core elements of a thriving human life, to research on autistic adulthood. In doing so, we identify areas where autistic adults thrive and where they often struggle, and highlight issues to which researchers, clinicians and policymakers should respond. The resulting picture is far more complex than conventional accounts of autism imply. It also reveals the importance of engaging autistic adults directly in the research process to make progress towards genuinely knowing autism and supporting flourishing autistic lives. The focus on functional deficits in conventional autism research constrains understanding of autistic lives. In this Review, Pellicano et al. appraise research on autistic adulthood through a capabilities lens to identify areas where autistic adults thrive, and where more research and services are needed to enhance their quality of life.
... Research comparing men and women has shown that women tend to report more frequent and challenging barriers to adulthood autism diagnosis. For example, in a large European study, more autistic men than women knew where to access a diagnostic assessment and how to find information about the process (Scattoni et al., 2021). Similarly, a US-based international study found that autistic women reported greater difficulty than men when finding a diagnostician who specialised in their gender, and greater concern that they would be not listened to, not believed and would be blamed for their symptoms (Lewis, 2017). ...
Lay abstract:
An autism diagnosis can have a big impact on women and make it possible to access support. This study explored women's experiences of being diagnosed with autism as an adult in Australia, to try to understand what was helpful (facilitators) and unhelpful (barriers) for them during this process. We interviewed 10 autistic women who had been diagnosed in the last 5 years. Framework analysis was used to understand the data. We wanted to understand barriers and facilitators relating to the individual participants, the professionals they saw and the system they went through for their diagnostic assessment. Women reported that being able to recognise they were autistic, being motivated, preparing for the assessment, having social support and unmasking to be themselves were helpful during the diagnostic process. They reported that having a knowledgeable diagnostician who made accommodations for their needs assisted them during the assessment process. When providers dismissed the participants when they first raised the possibility they were autistic, it delayed them in seeking an assessment. At the system level, the women in this study found some aspects of the healthcare system difficult to navigate, particularly costs and long waitlists. Some found the assessment tools used were not well suited to them. The experiences of the women in this study highlight improvements that could be made to accessing an adulthood autism diagnosis in Australia. These include improving provider knowledge of the varied presentation of autism and the development of resources to help autistic women prepare for their diagnostic assessment.
... Punshon et al., 2009). To date, only two studies examined adults' experiences quantitatively (Jones et al., 2014;Scattoni et al., 2021). Considering the importance of consumer perspectives (World Health Organization, 2010), lived experience knowledge should not be limited to a single methodology or research topic. ...
... Quantitative and qualitative findings on diagnostic processes showed great heterogeneity and deviation from what is now recommended practice (Whitehouse et al., 2018), similar to findings from a recent evaluation of adult diagnostic processes in the European Union (Scattoni et al., 2021). Of concern is that a small but significant proportion reported receiving a diagnosis without undergoing assessment. ...
... Omission of aspects such as adaptive functioning and co-occurring psychiatric conditions in some assessments is another concern. Compared to Scattoni et al. (2021), our participants were less likely to have experienced multidisciplinary assessment and assessment of co-occurring conditions. It was also unclear whether participants' assessors had training and experience in adult autism. ...
Pathways to diagnosis in adulthood are poorly understood. Even less is known about undiagnosed adults who believe they may be autistic. This mixed-methods online survey examined adults’ journeys from initial concern to receiving the diagnosis. Quantitative findings showed the diagnostic process to be highly heterogeneous. Qualitative analysis identified desires for explanation and support as motives for seeking diagnosis. Cost and fear of not being taken seriously were major barriers, echoed by qualitative responses that described the process as confusing, expensive and time-consuming. While most participants were satisfied with the diagnosis, their emotional reactions were complex. Findings support the need for thoroughly implementing national guidelines, and for improved knowledge and communication in mainstream clinicians encountering clients with possible autism characteristics.
... In adulthood, autistic persons often face challenges around services, such as lack of autism training of service providers and chaotic services management or, alternatively, having to pay for private services. Consequently, autistic adults or carers of autistic adults tend to express dissatisfaction with post-diagnostic support, interventions, and management of medical and psychiatric co-occurring conditions (7)(8)(9)(10)(11)(12)(13)(14)(15). A recent study explored autism service satisfaction and preferences of parents/guardians and autistic adults in Canada, France, Germany, Italy, and the United States (16) and the investigators found high rates of satisfaction for autism-specific early intervention and general day services but general dissatisfaction for job training and mixed-disability day services. ...
... A recent study explored autism service satisfaction and preferences of parents/guardians and autistic adults in Canada, France, Germany, Italy, and the United States (16) and the investigators found high rates of satisfaction for autism-specific early intervention and general day services but general dissatisfaction for job training and mixed-disability day services. Dissatisfaction could be one consequence of poor alignment between autistic services recommendations and actual experiences by users that has been reported in a few studies (8,15,17). Also, very few studies have explored the views of adult services by professionals versus autistic adults and carers [e.g., (15)]. ...
... Dissatisfaction could be one consequence of poor alignment between autistic services recommendations and actual experiences by users that has been reported in a few studies (8,15,17). Also, very few studies have explored the views of adult services by professionals versus autistic adults and carers [e.g., (15)]. ...
There is very little knowledge regarding autistic adult services, practices, and delivery. The study objective was to improve understanding of current services and practices for autistic adults and opportunities for improvement as part of the Autism Spectrum Disorder in the European Union (ASDEU) project. Separate survey versions were created for autistic adults, carers of autistic adults, and professionals in adult services. 2,009 persons responded to the survey and 1,085 (54%) of them completed at least one of the services sections: 469 autistic adults (65% female; 55% <35 years old), 441 carers of autistic adults (27% female; 6% <35 years old), 175 professionals in adult services (76% female; 67% in non-medical services). Top choices by autistic adults, carers or professionals for services best suiting their current needs were: residential services: “help in own home” (adults, carers of high independent adults, professionals), “fulltime residential facility” (carers of low independent adults); employment services: “job mentors” (adults, carers of high independent adults, professionals), “Sheltered employment” (carers of low independent adults); education services: “support in regular education setting” (all groups); financial services: financial support in lieu of employment (“Supplementary income for persons unable to have full employment” for adults, “full pension” for carers of low independent adults) or to supplement employment earnings for carers of high independent adults and professionals; social services: “behavior training” (adults) and “life skills training” (carers and professionals). Waiting times for specific services were generally < 1 month or 1–3 months, except for residential services which could be up to 6 months; most professionals were uninformed of waiting times (>50% responded “don’t know”). Five of seven residential services features recommended for autistic adults were experienced by <50% of adults. The knowledge of good local services models that work well for autistic adults was generally low across all services areas. The variation in services experiences and perceptions reported by autistic adults, carers, or professionals underscore the need to query all groups for a complete picture of community services availability and needs. The results showed areas for potential improvement in autistic adult services delivery in the EU to achieve recommended standards.
... Alternatively, these results may reflect discrepancies in the perceptions and experiences on local services' use between adults and professionals. Previous studies have already revealed poor alignment between services recommendations and actual experiences by autistic adults (Crane et al., 2018;Mukaetova-Ladinska, & Stuart-Hamilton, 2016;Scattoni et al., 2021). ...
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services’ use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
