Data analysis for the three stakeholder groups revealed a variety of barriers, facilitators, and needs in the healthcare of autistic adults in Germany, focusing on medical and psychotherapeutic care. In addition, recommendations for improving healthcare were identified. This resulted into six group-overarching themes with several subthemes that are outlined below: (1) lack of knowledge about autism, (2) a need for increased participation/ involvement, (3) consideration of autism-specific needs in treatment, (4) lack of services, (5) limited access to services, (6) improvement of stakeholder collaboration (see Table 2). The majority of themes and subthemes were reported equally across the three stakeholder groups. Differences are reported within the description of the themes.
Table 2 Overview of themes and subthemes
Although interviews and focus groups were structured to assess barriers and needs per level (individual, professional, structural) across groups, the resulting themes were not selective to a single level but overarching in nature and were not perfectly equal across groups. Figure 1 provides a simplified visualization of the main findings, clustering the themes (shown in circles) by relevant stakeholder group (x-axis) and respective level (y-axis).
Fig. 1
Simplified visualization of themes related to level and group of stakeholders
The following sections give a detailed overview about the separate themes. Participant identification numbers are used below to indicate direct quotations in accordance with the consolidated criteria for reporting qualitative research (COREQ) [48].
Lack of knowledge about autism
The theme “lack of knowledge about autism” in adulthood was mentioned by all participants as an important barrier in healthcare of autistic adults at all three levels (individual, professional and structural; see Fig. 1). For this theme, several subthemes were identified in the data: (i) stigma about ASD in society, (ii) lack of knowledge among healthcare providers, (iii) research about ASD in adulthood and in women.
First, (i) stigma about ASD in the society and “that public and media often have a very distorted picture of what autism actually is, and especially the area of high-functioningFootnote 2 is extremely difficult” (autistic adult; ibew6). According to participants, the portrayal of autism in the media has a negative impact on the healthcare of autistic adults because of misconceptions developed by stakeholders in the healthcare system.
Second, all stakeholder groups saw (ii) a lack of expertise among healthcare providers in adult autism as another major barrier. This “cluelessness” (autistic adult; ibew10) about autism would affect all professions in the healthcare system, e.g., physicians, psychotherapists, occupational therapists, and assistance providers. For example, autistic adults reported to hesitate sharing their diagnosis with healthcare providers because they feared discrimination. Participants considered the lack of education and training programs about autism to be the primary reason for this. It was “not easy at all” (healthcare provider; B1) to gain expertise in this field because healthcare providers “do not come in contact with any autism spectrum disorder treatment or even diagnostic theoretical idea, such as with anxiety disorder, personality disorder, etc.” (healthcare provider; B1). A psychotherapist described:
From my experience in advanced training in behavioral therapy, I can say that I certainly did not gain my knowledge about autism from advanced training in psychotherapy, so after six hundred hours of theory or something, I have already stopped counting and I have not had a single autism seminar, not a single one. […] I haven’t had a single teaching unit in my whole education on this, which is from my current perspective, absolutely devastating […]. (B4)
Participants described that healthcare providers frequently refused treatment based on lack of knowledge. For example, responses included “oh, you are autistic, no, I don’t have any experience with that, better contact someone else” (autistic adult; ibew11). Another autistic adult reported that “with Asperger’s and Attention deficit hyperactivity disorder [ADHD] in particular, I found that I had to make a lot of phone calls to find a therapist. I think nineteen out of twenty said, ‘we have no idea about that’” (ibew15). Autistic adults reported experiences like this and the subsequent burden. In addition, knowledge gaps were suggested as a reason for the high rate of misdiagnosis and resulting mistreatment of autistic adults. This was a prominent theme across all three stakeholder groups, but autistic adults and family/partners in particular reported stories of misdiagnosis, years of mistreatment, and resulting negative impact on a personal and emotional level. A man described his autistic wife’s diagnostic path:
[…] my wife was also diagnosed with all kinds of things in life: schizophrenia, depression, and so on. So almost every diagnosis, but no one had the idea that it could be autism and that’s just a pity that someone wastes her youth and her childhood. (Relative; I1)Third, all three groups emphasized the need of further (iii) research on ASD in adulthood and in women. Participants demanded better screening and diagnostic tools for adults in general and especially for women, as it would allow sooner diagnoses and “filtering of waiting lists” (healthcare provider; B2). Furthermore, “girls fall through the cracks” (relative, I5) in mental healthcare because characterization and manifestations of symptoms often differ in women and they tend to be more adapted than male autistic persons:
[…] I think this is very regrettable. And I know many young women who were diagnosed in adulthood. Before that, they had been diagnosed with borderline or something else. I think that’s very bad for the young women. And I would like to see that, in general, neurodiversity […] is taken into account when it comes to burnout and depression.” (relative, I5).In addition, healthcare providers identified the lack of valid measurements for severity assessment to be another field to be researched: “severity is poorly operationalized and therefore it is not possible to say in a very general way what the individual person needs in terms of support” (healthcare provider, B2).
A need for increased participation/ involvement
The theme “a need for increased participation/ involvement” refers to both the autistic adults and the relatives which should become more involved and participate in different areas of the healthcare system, according to most participants. This theme is classified at both the individual and professional level (see Fig. 1).
On the one hand, autistic adults and relatives postulated to become better involved in examinations and treatment in general. They demanded to be directly involved in decisions and to be informed about fundamental issues, such as medication, diagnoses and interventions and recommended treatment to be as transparent as possible.
Moreover, autistic adults recommended to systematically involve autistic adults into knowledge dissemination and research on ASD:
What is very important to me is bringing education about autism into the broad field. […] This is about medicine, care, and that must be brought into the broad area, and definitely in participation with autistic people. Only from the view inside it can be explained what autism is. (Autistic adult; ibew11)
In addition, all groups highlighted that “it is important trying to have a stronger exchange with family members” (autistic adult; ibew8). Support of relatives and partners, e.g., in planning and/ or accompanying appointments or activities of daily living was essential according to the participants. Without this support, many autistic adults would not be able to participate in the mental healthcare system. Nevertheless, they acknowledged barriers in involvement of relatives and demanded to “take a supporting person with you without being ridiculed” (autistic adult; ibew 2). Healthcare providers described that relatives also have a great impact on diagnostics and therapy, but are rarely involved at the moment:
And the family is not involved, it is not even implemented by the insurance company. There are always a few sessions with relatives, but the family is not really involved. And I also find that totally difficult when adults from the spectrum then end up in such an ordinary behavioral therapy. (Healthcare provider; T4)
Consideration of autism-specific needs in treatment
This theme describes challenges in accessing or participating healthcare services due to specific characteristics of autism itself. It addresses all relevant levels and was mentioned by all of the three stakeholder groups but was predominantly represented in the group of autistic adults. Following subthemes were identified in the data: (i) difficulties in executive functions and self-management, (ii) need for consistency and transparency, (iii) autism-specific sensory sensitivities, (iv) difficulties in verbal and nonverbal communication.
Participants reported (i) difficulties in executive functions and self-management on healthcare seeking behaviors affecting access to healthcare services, for example, when “completing very simple paperwork” (healthcare provider; B4), adhering to medication, navigating in the healthcare system, or planning/ attending appointments:
So, something like making an appointment, but also attending the appointment if I don’t know the place yet. That means estimating how long it will take me to get there, even with public transportation, because I don’t drive a car. So to organize something like that. Or, in general, not to take on too much for one day and to estimate how long I have to plan for this appointment. (Autistic adult; ibew2)
Furthermore, the (ii) need for consistency and transparency in treatment and healthcare settings was emphasized. “New situations are difficult” (autistic adult; ibew 14), including changes in staff, appointments or environment. An autistic adult described:
The biggest challenge is when I go to a new physician where I don’t know the environment, the practice, everything. To get used to it is a big challenge for me, for which there is not really a solution apart from doing it. (Autistic adult, ibew5)
Autistic adults said that it would be difficult not to be involved in treatment and not to obtain “background information”, for example about physical examinations (autistic adult; ibew11). Some said it was helpful if providers “explained [treatment] step by step”, if they involved in medication adjustments, and informed about diagnoses.
Most participants highlighted the impact of (iii) autism-specific sensory sensitivities on seeking or receiving mental healthcare for autistic adults. Healthcare facilities would cause stress and overload because they are not tailored to autistic peoples’ needs. For example, it was described that “physical contact is unpleasant” (autistic adult; ibew8), “smells can be very disturbing and irritating” (autistic adult; ibew4), “noises are very unpleasant and hardly bearable” (autistic adult; ibew2), “sensitivity to light leads to distraction” (autistic adult; ibew4), and overall “chaos reigns in the practices” (autistic adult; ibew 14). In addition, difficulties in body awareness and pain perception were mentioned:
On the one hand, being very sensitive during examinations and being unable to handle and endure a lot of situations, but on the other hand, not always noticing when there is pain or symptoms. In any case, these are also major barriers. (Autistic adult; ibew2)
Autism-related (iv) difficulties in verbal and nonverbal communication with medical staff also were a prominent topic, such as difficulties in making appointments by phone or miscommunications with healthcare providers during treatment or examinations. Autistic adults reported to struggle in following spoken instructions or answering open-ended questions. For example, an autistic participant described the following interaction with a physician:
“‘Where exactly does it hurt?’” – I always feel very stupid when I can’t answer that. It would be better to ask, “Is this a pain in the whole abdomen or specifically in one spot?“ Then it would be easier for me to understand that it may just hurt in the whole abdomen and that this is okay as a description. (Autistic adult; ibew12)
In addition, autistic participants described problems in communicating symptoms because “they like to be on the matter level and tend to communicate information and the emotional stuff doesn’t get carried along” (autistic adult; ibew3). This would cause that “many symptoms are not even recognized properly or are dismissed as incidental […]” (autistic adult; ibew4). Autistic adults also described difficulties with typically very brief clinical appointments: “I feel rushed under time pressure and then I forget a lot of what I actually wanted to discuss. The appointments are often too short” (autistic adult, ibew9).
As mentioned before, this theme was predominately represented in the group of autistic adults. In general, they emphasized individualization of treatment of autistic adults as a facilitating factor to cross barriers in these autism-related difficulties.
Lack of services
All stakeholder groups commonly agreed upon a lack of mental healthcare services for adults with autism: “The whole system is not intended for autistic adults. It seems as autism is seen as a children’s disease […]” (autistic adult; ibew6). Especially “the high-functioning are not acknowledged or are not seen as a relevant group” (autistic adult; ibew6). Following subthemes were identified, referring to the professional and structural level: (i) transition, (ii) diagnostic services, (iii) psychotherapeutic services, (iv) inpatient services, (v) low-threshold services, (vi) assistance services.
Participants criticized the lack of adequate support systems for (i) transition from youth into adulthood. Mental healthcare would be provided during childhood and adolescence, but collapses once autistic individuals reach adulthood. An autistic adult reported:
The main problem is that the areas are separated from each other. The area of child and adolescent psychiatry and the area of adult psychiatry, not only in psychiatry, but also in medical care. Then you have to go from one to the other and are and treated completely differently. (Autistic adult, ibew2)
Participants demanded transitioning being adjusted in regard to the development of the individual rather than to the age and to “install a support system at least temporarily” (healthcare provider; B4).
Another prominent topic, particularly discussed by healthcare providers, was limited (ii) diagnostic services for adults seeking an ASD diagnosis as expressed by long waiting times for obtaining diagnostic assessment:
In [city name], healthcare is, I would say horrible, waiting times at the [name of hospital] for the autism consultation two and a half years, only a handful psychiatrists in practice, completely overloaded and waiting times about three years. (Healthcare provider; B2)
This was explained by a limited amount and limited capacity of specialized services: “there are not enough diagnostic and therapeutic centers at all” (healthcare provider; T5), especially in rural areas. Furthermore, it was expressed that psychometrically valid and specific screening and diagnostic instruments for autistic adults, also suitable for use in primary care, need to be developed which could shorten or optimize the diagnostic process.
After ASD diagnosis, participants reported “being left completely alone” (autistic adult; ibew13) with insufficient availability of subsequent (iii) psychotherapeutic services. Participants also described limited and scattered specialized services (“in the country side, very very few therapy options for older autistics or Asperger’s autistics […]. I would have to drive 100 kilometers to get anything, any help at all.“ (relative; I4)). Autistic adults and relatives remarked to put up with long-distance therapy because there were no services close to their residence or waiting lists were at maximum capacity. Reported waiting times for psychotherapy ranged from nine months to one and a half years. Even when successfully accessed therapy, a few autistic adults highlighted their need for individually tailored support and personalized treatment: “The needs are very individual. And even in the high-functioning area, if you compare two people, then the needs or the level of suffering, etc. and the living situation might be very different (healthcare provider; B3).”
With respect to (iv) inpatient services, including psychiatric or rehabilitation services, all stakeholder groups agreed upon the need for increased specialized and personalized services. “In inpatient healthcare of people with autism spectrum disorders, […] there are very, very few offers” (healthcare provider; B2), and “shared rooms in hospital are just not acceptable. I think if you are autistic, you should have the opportunity, at least if it is possible, to get a single room” (relative; I2).
Furthermore, all groups of stakeholders criticized a lack of (v) low-threshold services, suggesting, for example, to expand self-help groups for autistic adults as well as for relatives:
Very little attention is paid to the fact that not only the affected person is impacted, but also a large number of people around them. I think it would be very, very good and very important if more counselling were created, for example get relatives informed or they can also experience support for themselves. (Autistic adult; ibew15)
Relatives/ partners described stress and burden due to the support of the autistic relative. Therefore, they “would really like to have support also as a relative. That you are taken by the hand in order to understand conflicts better, to accept peculiarities better and to spend a good and stress-free life together with the affected person” (relative; I2).
Autistic adults highlighted the need for further low-threshold services, such as music, sports, or occupational therapy, specialized for autistic adults or low-threshold crisis counselling: “there is only one telephone emergency service for autistic people in Germany and that is a voluntary one. And that’s also relatively small given such a high suicide prevalence” (healthcare provider; T3). Counselling services for different purposes were mentioned. Healthcare providers described the need especially for social therapeutic services in particular: “because often it’s not about psychotherapy or processing the experiences from the past, but supporting, in order to somehow cope with the daily challenges, for Asperger’s, […] with the social challenges” (healthcare provider; B2). The need for peer counseling and information about existing services was also emphasized. Lastly, the lack of services for those who are not able to get manifest therapy or are waiting for it was expressed:
I think a larger network of counselling centers would be helpful, because I think that many affected people, many relatives experience greater barriers finding information at a clinic, a therapy center, than going to a counselling center or to a regulars’ table and seeking advice and exchange there. So, I think that would be a practical way to facilitate initial contact. (Autistic adult; ibew5)
Furthermore, participants across all groups highlighted the lack of (vi) assistance services for autistic adults without ID “because autism doesn’t mean therapy will be done and then everything will be okay again” (relative; T6). It was emphasized that case management (i.e. services to provide adequate healthcare for autistic adults according to their individual needs) needs to be implemented to relieve the burden on autistic adults, but also on relatives who often provide care and assistance. An autistic adult responded to the question how relatives and partners could be supported: “others who provide required assistance. In other words, assistance for autistic people across the whole lifespan. In my opinion, even a high-functioning autistic person like me needs some kind of lifelong assistance service” (autistic adult; ibew 11).
Limited access to services
Not only the lack of services was described, but also barriers in accessing the available services were highlighted in most interviews and focus groups. Two subthemes were identified in the data, which are loading on the professional and structural level: (i) lack of transparency about healthcare services, (ii) funding.
On the one hand, the (i) lack of transparency about healthcare services was described. Neither autistic adults nor relatives or healthcare providers were fully informed about available services. A healthcare provider described: “That’s the problem, caregivers don’t have an overview of available services, including myself. It’s not easy to find one’s way in this network, but that’s actually the most important thing” (healthcare provider; B1). For example, patients often do not receive adequate care after diagnosis and have to obtain information on their own or with the support of relatives. Those who found services reported to have problems with the complex application process that could not be managed without external support. Healthcare providers reported regularly assisting autistic people with application forms, even though they are not responsible to provide assistance services. Furthermore, autistic adults reported that, based on the division of healthcare services among different social systems, navigating the healthcare system would be difficult:
Access to services is so massively divided among the various social systems by law that it is incredibly difficult for me to even find out who is responsible for me and from whom I have to apply for what. Yes, the fact that the individual social systems are always trying to pass the buck to each other is also not conducive. (Autistic adult; ibew4)
In relation to this, it was criticized that (ii) funding of autism therapy is not provided by health insurance. An autistic adult shared her opinion on this topic:
Because at the moment autism therapy and psychotherapy are separated from each other. And a classic autism therapy is also not funded by the health insurance, because with health insurance financing, this healing aspect is always included, which is a wrong approach, in my opinion. (Autistic adult; ibew2)
Regular psychotherapy, on the other hand, is not funded by health insurance when only ASD is diagnosed. To be approved for psychotherapy, a mental disorder such as depression or anxiety disorder must be present. A healthcare provider mentioned “almost three-quarters have a relevant co-morbidity, so the largest group finds access” (healthcare provider; T5) to psychotherapeutic services, but it would be a problem anyway. In addition, it was criticized that statutory health insurance companies do not enable rapid support in case of crisis situations.
Improvement of stakeholder collaboration
This theme includes the collaboration of relevant stakeholders in the healthcare of autistic adults on a professional and structural level, which were mentioned to be healthcare providers from various professions. Primarily healthcare providers, but also few autistic adults emphasized the need for collaboration between different groups of professions and “multi-professional teams work[ing] with affected people” (autistic adult, ibew7). Many participants described that this could allow for simplification of healthcare processes, as all providers can be on the same level of knowledge about the patient – as long as the autistic adult consents. Some participants mentioned that collaboration would also facilitate the transition between pediatric and adult healthcare providers:
That the new doctor can also call the old doctor if there are any questions until the autistic person is really back at home with the new one, where he or she is again in safe hands during this transition phase. (Autistic adult; ibew11)
Few healthcare providers also highlighted that exchange with other providers also contributes to increase knowledge about autism: “there should actually be more networking and more exchange of experiences” (healthcare provider; B2).
