Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals’ Experiences

The survey questions were created from a variety of published guidelines and recommendations regarding interventions for autistic adults (i.e., Autism Europe, 2013; Kendall et al., 2013; National Audit Office, 2009; NICE, 2012; Think Autism: Updating the 2010 Adult Autism Strategy). The survey questions and response options are presented in the Supplementary Material 1. The answer choices were designed to gauge how closely the respondent’s experiences with local intervention services matched the published recommendations. Three versions of the survey were developed to target autistic adults; family/caregivers of autistic adults (NOT necessarily the carers of the adults who participated in this study themselves); and administrators/professionals/service providers for adults. The draft surveys went through several stages of revision with inputs from the experts in all ASDEU sites. An autistic adult tested the on-line version for autistic adults and gave feedback.

Responders were instructed to select answers that seemed to suit 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) demographic characteristics of responders, including 12 questions for the autistic adults, 9 for carers, and 7 for professionals; (2) intervention practices for autistic adults, including 19 questions for autistic adults, 15 for carers, and 9 for professionals. The interventions section was restricted to responders who had recent adult intervention experience, e.g., autistic adults who had experience in the last two years with an intervention.

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.

The survey was carried out over 10.5 months in 2017. It 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 the 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, responders 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 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, only demographic characteristics and responses specific to intervention for autistic adults were analyzed. Only respondents who reported that they had recent knowledge of or experience with a particular intervention service were eligible to answer the relevant questions; all other respondents were automatically skipped to the next question. Thus, the intervention section was completed by a different number of responders depending on the specific question.

We analyzed the demographic characteristics and responses of 697 responders who were eligible to answer the intervention section (some variation in sample size per question depending on the intervention). These 697 responders answered ‘Yes’ to the following eligibility questions: ‘This section should be answered ONLY if you are in an intervention now or in the last two years, such as individual or group therapy to improve life skills or taking medicine for depression’ (autistic adult, 38%, n = 263); ‘You should answer this section ONLY if you have experience in the last two years with an intervention for the autistic adult. For example, the intervention could be individual or group therapy to improve life skills or taking medicine for depression’ (carer, 43%, n = 302); ‘Do you have knowledge of and current work experience (in the last two years) in interventions, such as individual or group therapy or medication, for adults on the autism spectrum?’ (professional, 19%, n = 132). Aggregated descriptive statistics by respondent group were calculated for all questions. We performed stratified analysis to see if variation in responses about intervention types was associated with the autistic adults’ level of independence/support needs reported by carers (Supplementary Material 8).

The 697 responders were mostly women (autistic adults: 68%, n = 180; carers: 85%, n = 256; professionals: 78%, n = 103), while the autistic adults cared for by carers were mainly men (71%, n = 215). Almost half of the autistic adults (40%) were over 35 years of age whereas only 17% of the carers’ adults were over 35. Participants were primarily living in Denmark (26%, n = 198), France (17%, n = 113), Finland (17%, n = 105), Spain (13%, n = 95), Poland (9%, n = 62), Italy (9%, n = 56), and Iceland (4%, n = 32) and lived in cities that are not capital cities (69%; n = 485). Most of the autistic adult responders reported to be currently in college/university education program (17%, n = 44) or had completed study at a college/university level (27%, n = 70). Over half (57%, n = 149) of the autistic adult responders were unemployed, and the most common reason for unemployment was having a disability that prevents them from having a job (40%, n = 59). One quarter (24%) of the autistic responders was diagnosed between 16 and 25 years old, while the rest were 26 years of age or older (Supplementary Material 2).

About half of autistic adults cared by carers had some level of independence (high level of independence, 9%, n = 26; some independence but need support, 40%, n = 122), whereas the other half required a high level of support (needs a high level of support in daily living, 36%, n = 110; needs high level institution-like care, 15%, n = 44). Sixty percent of the autistic adults cared by carers were diagnosed between 16 and 25 years old, while the rest were 26 years of age or older (Supplementary Material 2).

The most commonly represented professional backgrounds were psychologists (46%, n = 61), teachers/pedagogues (13%, n = 17), and psychiatrists (11%, n = 14) (Supplementary Material 2).

As shown in Table 1, among adults and carers, about 63% reported that the adult received—in the last two years—psychosocial interventions (e.g., individualized interventions; group therapy; support groups). More than the 53% of adults and carers reported that their psychosocial interventions were for core autistic features, daily life skills, co-occurring mental conditions or reducing stress. A discrepancy was observed between adults (< 32%) and carers (> 49%) in reporting psychosocial interventions used for improving personal safety, speech/language skills, and physical or leisure activity (Fig. 1). More than 73% of professionals reported that psychosocial interventions were standard routine practice/often considered for all features (i.e., core autistic features; reducing stress; co-occurring mental conditions; daily life skills; improving personal safety; speech/language skills; physical or leisure activity) (Fig. 1).

Over half (57%, n = 146) of autistic adults and 42% (n = 124) of carers reported that the adults received an intervention in the last 2 years that only used medicines or medical procedures. The majority (62%) of the carers of high-level support or institution-like care autistic adults received only pharmacological intervention (Supplementary material 8). Among these responders, 52% to 85% used medicines or medical procedures for helping to control sleep problems, moods or emotions, or treating mental conditions. More than the 83% of the professionals reported that pharmacological interventions were standard routine practice/often considered for helping to control these problems (Table 2).

Table 2 shows that 14% (n = 36) of autistic adults and 20% (n = 60) of carers reported that the adults received pharmacological interventions NOT recommended for treating core autistic symptoms in the last 2 years. The majority (63%) of the carers of high-level support or institution-like care autistic adults received only pharmacological intervention for treating core autism spectrum symptoms (Supplementary material 8). Among those responders that reported pharmacological interventions for treating core autism spectrum symptoms, the most frequently reported medicines by autistic adults were antidepressants (72%). Among carers 57% reported use of antipsychotics. More than 64% of professionals reported that antidepressants and antipsychotics were standard routine practice or often considered for core autism spectrum behaviors.

About 17% to 27% of autistic adults and carers reported that seizure medications and special diets were considered for core autism spectrum symptoms. Whereas, more professionals reported seizure medications (56%), special diets (26%), or stimulants (27%) as a standard routine practice or often considered for core autism spectrum behaviors. Notably, across all medicines or medical procedures, a high frequency of professionals (17% to 48%) reported that they did not know how often the pharmacological or medical-type intervention was used for core autism spectrum behaviors. Small fractions (0% to 3%) among all groups reported the use of oxytocin, secretin, chelation, hyperbaric oxygen therapy, or testosterone for treating core autistic symptoms.

Among the autistic adults (86%, n = 209) and carers (80%, n = 235), most did not experience any of the NOT recommended pharmacological intervention for core autistic symptoms in adulthood. Among professionals, 69% (n = 85) experienced three or less of the NOT recommended features (Supplementary Material 6).

As shown in Table 3, less than 9% of the autistic adults and less than 22% of carers reported that a family member, sibling, partner, or carer received at least one intervention in the last 2 years. For example, less than the 3% of carers reported experiencing marital counselling. In contrast, over half of professionals reported family interventions as standard routine practice or often considered for families, siblings, partners, or carers of autistic adults, except for marital counselling or respite care. It is worth noticing that marital counseling was reported more often by carers of high or some independence autistic adults (73%), while respite care was reported more often by carers of high-level support or institution-like care autistic adults (75%) (Supplementary Material 8).

Table 4 shows that 38% of autistic adults reported self-harm (such as hitting themselves) or trying to harm themselves (including trying to commit suicide), and 12% reported harming other people (such as hitting other people) in the last two years. Almost half (46%) of carers reported that the adult they cared for had challenging behavior, for example self-harm, attempted suicide, or aggression towards others in the last two years. Among responders who reported having experienced challenging behaviors, less than 26% of autistic adults and 55% of carers reported to have been in an intervention to help change the behavior.

The majority of the autistic adults received, in the last two years, a psychosocial intervention (e.g., individualized interventions; group therapy; support groups). As expected and recommended by the NICE guidelines, psychosocial interventions were used for a wide array of behavioral and daily life issues. More than a half of the responders experienced psychosocial interventions for core autistic features, daily life skills, co-occurring mental conditions, or reducing stress. Not many (< 32%) autistic adults reported psychosocial interventions for speech/language skills, physical or leisure activity, or improving personal safety. However, more than the 70% of the professionals reported that psychosocial interventions were used for all these features as standard routine practice or often considered.

The latter results from the autistic adults may reflect their relatively high levels of independence and functioning; it is possible that they did not need these types of support. 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).

Many of the autistic adults (adults: 57%; adults’ carers: 42%) received a pharmacological intervention in the last two years. More than a half of these responders received pharmacological interventions to control sleep problems, moods/emotions or treating mental conditions. Whereas, a higher proportion of professionals (> 83%) answered that pharmacological interventions were standard routine practice or often considered for helping to control these problems. Again, discrepancies between autistic adults, carers, and professionals’ experiences and perceptions have been observed. However, the discrepancies have to be considered with caution. First, professionals were mainly non-medical specialists (e.g., psychologists; teachers/pedagogues) and also were answering in view of general services practice whereas the autistic adults and carers were reporting only their personal experiences. Further, autistic adults and carers may not have been able to properly distinguish the specific condition for which the pharmacological agents had been prescribed.

The NICE guidelines recommend carers’ needs assessment and interventions for families, partners, and carers. Family interventions were relatively infrequently used by carers (< 22%), and such interventions were reported at even lower rates by adults (< 9%). These rates may reflect that, first, the autistic adults may not be aware of the interventions carried out by their family members, and second, the relatively high levels of independence and functioning of the autistic adults and perhaps less need for family support. Or, the results may reflect an unrecognized need. In contrast, more professionals (> 44%) reported family interventions as standard routine practice or often considered. It has to be recognized that autistic adults and carers’ perceptions were limited to their own personal experience while professionals’ perceptions were based on a large sample of professional experiences. Thus, autistic adults, carers, and professionals’ answers may not be directly comparable.

A large minority (38%) of autistic adults reported self-harm behavior and 12% reported injury to others behavior in the last two years, while 46% of carers reported that the adult they cared for had these challenging behaviors in the last two years. Non-suicidal self-inflicted injuries and suicidal tendencies rates in autistic adolescents and adults are higher than non-autistic peers (Cassidy et al., 2018; Maddox et al., 2017), and more often is the cause of death (Schendel et al., 2016).

More that the 26% of autistic adults and 55% of carers experienced an intervention to help change challenging behaviors. Previous research highlighted the importance of the autistic adults and carers’ perception of receiving appropriate intervention which may impact their well-being (Burgess & Gutstein, 2007; Camm-Crosbie et al., 2019; Cassidy et al., 2018).

The modalities and types of interventions for challenging behavior are also described in NICE guidelines. Before initiating interventions for challenging behavior, professionals should explore factors that may start or maintain the challenging behavior (i.e., care for physical disorders; treatment for any coexisting mental disorders; interventions already in place). The choice of the intervention should be personalized on the nature and severity of the behavior of the autistic adult, the person’s physical needs and capabilities, the physical and social environment, the capacity of professionals and carers to provide support, the adult’s and carer’s preferences, and the past history of care and support (NICE, 2012). Most of the recommendations for factors to be considered when planning an intervention for challenging behavior were experienced by the majority of adults, carers and professionals. The features least often experienced by adults or carers included recent changes in personal circumstances and the presence of a physical disorder. More than the 80% of professionals, however, reported that these two factors were standard routine practice or often considered.

Professionals should consider changes in personal circumstances and the presence of a physical disorder when deciding on an intervention for challenging behavior since they are important factors that may influence intervention outcomes (Kendall et al., 2013).

The present study has some limitations that should be considered when interpreting the results. First, the sample was not collected using a rigorous scientific frame. Thus, recruitment may be affected by selection biases: the survey was limited to responders with internet access and with contacts with local associations. Second, the autistic adult sample may be poorly representative of male autistic adults since most autistic adult responders were females. However, higher responses among females is common for online surveys (Smith, 2008). Third, the autistic adult responders and those represented by carers were not comparable in some of the demographic characteristics. The majority of autistic adults were in or had completed their education at the university/college level. In contrast, 36% of the autistic adults cared for by carers needed a high level of support in daily living and 15% needed institution like-care, indicating a higher need for support in the carers’ adult than the autistic adult responders. Fourth, since the ASDEU survey covered many services areas apart from intervention services, specific clinical information regarding the responders and the intervention was not collected (e.g., the level of social adaptation for each adult, the type of professional who diagnosed the adult and the instrument of diagnosis). Also, we did not collect data on the cultural background of the responders. Indeed, culture may play a role in determining what interventions are available and responses to intervention. While we did not ask for the specific age of starting the intervention, only respondents who had an adult intervention experience in the 2 years prior to taking the survey were eligible to answer the intervention questions. Future studies focusing on intervention services should seek to ask participants for more detailed information about the autism diagnosis, level of social adaptation, cultural, and intervention background. Fifth, medical professionals were less represented in the sample since the majority of professional responders were psychologists or teacher/pedagogues (although this may accurately reflect the profile of adult services professionals in communities). Finally, the highest proportion of responders were those living in Denmark, thus other European communities may be under-represented.