Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study

Survey questions were based upon a variety of published guidelines and recommendations regarding services for autistic adults (Autism Europe 2013; Kendall et al. 2013; National Audit Office 2009; NICE 2012, 2014a, b, 2016; Think Autism: Updating the 2010 Adult Autism Strategy) which describe quality standards for health and social services for autistic adults and associated approaches for the evaluation and profiling of needs and gaps in services for autistic adults. Response options for many questions were developed to reflect how closely respondents believed that the local services that they had experienced ‘fit’ these recommendations. Thus, the survey results provide a measure of how closely services provision at the local ASDEU level aligned with published guidelines.

Three versions of the survey were developed: for autistic adults; family/caregivers of autistic adults; and administrators/professionals/service providers for adults. The draft surveys went through several stages of revision with input from all ASDEU sites. An autistic adult tested the on-line questionnaire for autistic adults and gave feedback. The survey’s questions and response options are presented in the Supplementary Material 1.

In the survey’s introduction, responders were instructed to select answers that seemed to fit most closely with what they knew or had experienced and to answer to the best of their knowledge and experience. Questions were written using everyday language and avoiding technical terms that might not be understood or applicable across different countries. The present study used data from two sections of the survey: (1) the demographic characteristics of responders, including 12 question for the autistic adults, nine for carers, and seven for professionals; (2) the experiences and perceptions on the autism diagnostic process and post-diagnostic support, including four subsections: (i) age at diagnosis, waiting time for service and knowledge of local diagnostic services (four questions for autistic adults and carers, and three questions for professionals); (ii) information on how to get a diagnostic evaluation for autism in adulthood (i.e., available on internet, on print, easy to find or understand); (iii) recommended and NOT recommended features for an adult diagnostic evaluation for autism spectrum (13 features for autistic adults, 14 for carers, and 21 for professionals), and (iv) recommended features for autistic adult post-diagnostic support (four features for autistic adults and six each for carers and professionals). The autistic diagnostic and post-diagnostic support section was restricted to respondents who had adult diagnosis experience, e.g., autistic adults who were diagnosed with autism at 18 years of age or older.

The lead site for the adult services component of ASDEU (Denmark) provided all ASDEU partners with information and suggestions on how and to whom surveys could be distributed. Subsequently, all partners sent out survey notices and invitations to participate to autism organizations (national, local, voluntary) and service providers organizations (public and private; including residential facilities, job training and education programs). Furthermore, these organizations were encouraged to publish the survey links through their channels (e-newsletters, websites, or social media accounts). The researchers at each site also disseminated their surveys through their professional networks and on social media. This approach to recruitment was the only feasible process, given the limited resources of the ASDEU study.

The survey was launched in mid-February 2017 in three languages (English, Spanish, and Danish). By mid-September 2017, all three versions of the survey had been launched in 11 languages (English, Spanish, Danish, French, Polish, Icelandic, German, Finnish, Italian, and Romanian, as well as Portuguese for professional version); data for this analysis were based on the total responses obtained up to December 2017.

Each ASDEU site obtained local ethical approval as needed before distributing the survey in their country. All procedures in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the World Medical Association Declaration of Helsinki and its later amendments or comparable ethical standards. Prior to starting the survey, respondents had to read the information about the survey and give their informed consent electronically. No personal identifying information was collected. For analysis, data were handled in aggregated form; no feedback to participants was provided nor were individual respondent’s results reported. The background information section of the survey obtained a few demographic characteristics in order to classify the respondent for analysis purposes (e.g., gender, age, highest education level, country of residence, population size of the community where living/working).

Overall, data from the 2009 completed or partially completed surveys were distributed as follows: autistic adults (n = 667), carers of autistic adults (n = 591) and professionals (n = 751). For the purpose of the present study, responses specific to the two sections on demographic characteristics and experiences and perceptions on the autism diagnostic process and post-diagnostic support were analyzed. The survey did not ask autistic adult or carer respondents to provide the source of the adult’s autism diagnosis. The autism diagnostic process and post-diagnostic support section was completed by responders who answered ‘Yes’ to the following questions: ‘were you 18 years of age or older when you got the autism spectrum diagnosis?’ (autistic adult, 53%, n = 356); ‘Did the adult get the autism spectrum diagnosis when he or she was 18 years of age or older?’ (carer, 15%, n = 88); ‘Do you have knowledge of and current work experience (in the last 2 years) in diagnostic procedures in adults and post-diagnostic support for autistic adults?’ (professional, 20%, n = 151). Aggregated descriptive statistics were calculated for all questions. We performed stratified analysis to see if variation in responses was associated with gender of the autistic adults or with level of independence/support needs of the autistic adult reported by carers. Due to the small sample size (n = 11), responders who answered ‘Other/no answer’ to the question about their gender were excluded from the gender stratified analysis.

We also performed two sensitivity analyses. First, we repeated analyses of select questions (knowledge of good local models; diagnostic information easy to find or understand; experience with recommended features for the diagnostic process and post-diagnostic support) by country of residence. Second, we repeated analyses of questions regarding the adult’s or carer’s experience with recommended features for the diagnostic process and post-diagnostic support after excluding respondents who we were able to ascertain with certainty that they had received the ASD diagnosis before publication of the 2012 NICE guidelines (based on comparing the reported age range at completion of the survey and age range for age at diagnosis).

The demographic characteristics (Supplementary Material 2) are presented for those autistic adults (n = 356) and carers of autistic adults (n = 88) who reported an autism diagnosis at 18 years of age or older and for those professionals (n = 151) who had knowledge of and work experience—in the last 2 years—in diagnostic procedures in adults and post-diagnostic support for autistic adults. Respondents across all three groups were mainly women (autistic adults: 73%; carers: 90%; professionals: 74%), whereas 39% of cared-for autistic adults (by the carers) were women. The age ranges of the majority of respondents were: autistic adult responders, 26–45 years (62%), carers, 46–64 years (59%), and adults cared for by carers, 18–35 years (65%). Almost all autistic adults (97%) reported that they completed the survey by themselves. The largest group of participants lived in Denmark (34%, n = 218, across all 3 respondent groups). The other most-represented countries were Finland (16%, n = 96), France (16%, n = 95), Spain (7%, n = 42), Italy (6%, n = 36), Poland (5%, n = 34), and Iceland (4%, n = 26). The majority of responders (68%, n = 419) lived in cities that are not capital cities and responders were well distributed across communities of different population sizes.

The majority of autistic adult responders were not enrolled in educational programs at the time of survey completion (81%, n = 289), but of these 47% (n = 137) had reached college or a university education level. Among the autistic adults who were attending an educational program (part or full time, 19%, n = 67), the majority were enrolled in a college or university education program (79%, n = 53). 50% of the autistic adults reported that they were unemployed (n = 182). The main reason selected for unemployment was having a disability that prevented them from having a job (36%, n = 65) (Supplementary Material 2).

More than 70% of carers reported to have known their cared-for autistic adult the adult’s whole life and most carers were the adult’s parents. More than half of carers reported that they were currently employed (53%, n = 47). More than a half of cared-for autistic adults were reported by the carer to have high or some independence, whereas the remainder (31%, n = 27) required a high level of support in daily living or institution-like care (Supplementary Material 2).

Half of the professionals had worked in the adult services and care sector for more than 10 years. Most of the professionals were psychologists (44%, n = 67), psychiatrists (12%, n = 18), or teachers/pedagogues (11%, n = 16). More than a half of professionals’ source of experience and knowledge about services for adults was reported to come from their current job at a city or regional level, while only 16% stated their services knowledge was most closely connected to the national level (Supplementary Material 2).

The number of respondents that were included in this analysis is less than for the survey overall (53% of autistic adults; 15% of carers and 20% of professionals). This reflects that half of the autistic adults and the majority of the carer’s autistic adults got the autism spectrum diagnosis when they were younger than 18 years of age, and the majority of professionals did not have knowledge of and current work experience (in the last 2 years) in diagnostic procedures in adults and post-diagnostic support for autistic adults.

The present study comprises a convenience sample. However, to date there are no ongoing population-based assessments of demographic characteristics of autistic adults in the EU, therefor it is unknown how the sample might differ from a true, representative sample. Most respondents were females even among autistic adults, which is common for on-line surveys (Smith 2008). This aspect needs to be considered, however, when interpreting the results in view of male–female differences in some autism features which may differentially impact their health and health behaviors (e.g., health care seeking). Thus, autistic male health experiences may be under-represented in the results. Based on achieved education level, employment status and the ability of almost all to complete the questionnaire with no help, the autistic adult respondents likely reflect higher functioning adults than has been observed in previous studies (Happé et al. 2016; Bancroft et al. 2012; Taylor et al. 2015), while the adults cared for by the carers were fairly evenly divided between adults with some level of independence and adults needing a high level of support. Carers were primarily parents of their autistic adult, although there were relatively higher numbers of carers of adults with some level of independence who were not parents than carers of adults needing high level support. On average, the autistic adult responders were somewhat older than the adults cared for by the carers but both groups of adults were generally in their 20 s and 30 s. Half of professional respondents were highly experienced in the adult services and care sector (for more than 10 years) and most commonly were psychologists. Their knowledge and experience about services for adults were mainly relevant to their community or to a larger, regional area. Respondents from all three groups were well distributed across communities of different sizes within their countries and lived in many EU countries. The single largest group of respondents lived in Denmark which may skew some results, but for which questions and in what direction it is difficult to determine with certainty.

Professionals were somewhat more likely to know of more diagnosis services that were specific for autism in adults than autistic adults and carers although more than 40% of respondents across all groups declared that they knew there were adult-specific services for autism diagnosis in their country but they did not know how many. More concerning was that among all survey respondent groups the knowledge of local diagnostic models that work well for autistic adults was generally low (autistic adults and carers: less than 31%; professionals: 61%); autistic females and carers of adults needing a high level of support were least likely to know of good local models.

Among all groups, the majority reported that the information on how to get a diagnostic evaluation for autism in adulthood was available on the internet, although these proportions were lowest for autistic females and carers of adults needing a high level of support. In contrast, less than 50% of autistic adults or carers reported that information on how to get an autism diagnosis in adulthood was available in print, whereas the majority of professionals reported that print material was available. This difference in reported availability of information on the internet or in print by autistic adults and carers should be investigated further to determine if disparities in access to the internet is a barrier to accessing diagnostic services information. Also, of concern was the evidence that less than half of respondents among all the categories reported that information on how to get a diagnosis was easy to find or to understand and these proportions were lowest for autistic females and carers of adults that need high support. Indeed, a more difficult experience by females during the diagnostic process has been observed in Siklos and Kerns (2007). Further, more than 20% of professionals did not know if diagnostic information was easy to find or understand.

Overall, these results suggest that delivery of information on diagnostic services for autistic adults could be improved and especially ensuring that information is easy to find and easy to understand. The results also suggest that gender and level of independence of autistic adults may adversely impact user experiences around the diagnostic process.

Reports of the waiting time between the request for a diagnostic evaluation and the beginning of evaluation was similar among groups: about 30% of the responders reported wait times of between 1 to 3 months and another 30% reported wait times of more than 6 months. It is important to ensure a short waiting time between the request for an evaluation and the evaluation not only for more timely interventions but also to increase service users’ satisfaction (Crane et al. 2016; Jones et al. 2014; Howlin and Moore 1997; Osbourne and Reed 2008; Siklos and Kerns 2007; Smith et al. 1994).

Among the three groups, more than the 55% of the responders reported to have experienced the majority of recommended features for the autism diagnostic process for adults including: a close person was asked about the adult’s symptoms, assessment of self-harm or harm to others, presence of language/communication problems, physical or mental conditions, sensory problems, and neurodevelopmental conditions like ADHD, and evaluation of functioning in different settings. For more than a half of professionals, consultation with other experts, evaluation of autistic core behaviors, use of standard tests for autism, tests for cognitive or psychological functioning, and physical examination, were considered as standard routine practice. One of the recommended features—evaluation of police encounters—was, however, experienced by less than 50% of all 3 groups. Further, the recommendation to evaluate a history of abuse was experienced by < 50% of autistic adults and carers while 71% of professionals reported it as a routine practice or often considered. There were notable gender differences in some responses, specifically evaluation of developmental problems, sensory problems, being abused/neglected or being taken advantage of were reported more often by autistic females, while evaluation of contact with the police was reported more often by autistic males. The features that were recommended to NOT be part of the diagnostic process (neuroimaging; genetic tests) were in fact experienced by only a small the minority of adults and carers (3–6%), although around 41–66% of professionals claimed that these NOT recommended features were standard routine or often considered. Again, there was some gender difference with autistic males more often than males reporting that they had experienced the features that were NOT recommended. In summary, results showed that most recommended features of the diagnostic evaluation are often experienced by users and professionals. However, there is room for improvement and in particular regarding evaluation of potential abuses or police encounters and avoiding inclusion of such features as genetic test and brain scan in routine practice. Further, the potential gender differences highlight the need to consider gender in studies of autism diagnosis services.

In contrast to the results for the diagnostic process, all five recommended features for autism post-diagnostic support for adults were experienced by less than 35% of adults and carers and about half of adults and carers reported that they had not experienced the recommended features but that the features were needed. Notably, autistic females and carers of autistic adults that need a higher level of support were least likely to report that they had been provided with written recommendations for care and follow-up for non-medical problems. These results are consistent with reports of lack of post-diagnostic support to be one of the major concerns in other parental and autistic adults’ surveys (Crane et al. 2016; Howlin and Moore 1997; Jones et al. 2014) and the need to improve post-diagnostic support services to enhance quality of life of autistic adults and their families (Mansell and Morris 2004; Siklos and Kerns 2007; Renty and Roeyers 2006).

Notably, over half of professionals reported that each of the recommended features for post-diagnostic support (except provision of a ‘health passport’) was standard routine practice or often considered. These specific results highlight the potential for discrepant views of adult services by professionals and actual experiences by autistic adults and carers. While poor alignment between services recommendations and actual experiences by users has already been observed in previous studies (Crane et al. 2018; Mukaetova-Ladinska and Stuart-Hamilton 2016), this study reveals for the first time the potential for different perceptions of services between autistic adults and carers versus professionals and highlighting the gap in the post-diagnostic support experienced by autistic adults and their carers.