Authors: Theresa Jubenville-Wood, David B. Nicholas, Jonathan Weiss, Sharon Cairns
Categories: Review Article, Autism, adults, enhanced critical incident technique, mental health, psychotherapy, qualitative methods
Source: International Journal of Qualitative Studies on Health and Well-being
Authors: Theresa Jubenville-Wood, David B. Nicholas, Jonathan Weiss, Sharon Cairns
A significant portion of autistic adults experience mental health challenges. Currently, the literature is incomplete when it comes to understanding the needs and preferences of autistic adults who receive therapy. This study elicited the perspectives of autistic adults, focusing on the facilitators, barriers and ways to enhance psychotherapy based on receiving this care for mental health problems.
Using the qualitative, exploratory approach of the Enhanced Critical Incident Technique, eight autistic adults took part in interviews.
A total of 147 critical incidents were extracted from participant interviews and categories salient to therapeutic practice. The study identified key factors influencing therapy, such as trust and respect, practical approaches, client factors, structure of sessions, knowledge about autism, support for individualized needs, access to mental health services, and involvement of family/advocate. These factors were categorized into eight main areas relevant to therapeutic practice.
Findings from this research reveal that psychotherapy with autistic adults is analogous to performing this work with non-autistic adults, in the sense that this work too entails elements of individually tailored treatment and the reliance on common therapeutic factors. There are also differences in this work that necessitate providers having foundational knowledge about autism. Learning directly from autistic adults’ insights may help to improve upon the delivery of mental health care for autistic adults.
Many autistic adults^1^ experience mental health problems, predominantly anxiety and depression (Croen et al., 2015; Gillberg et al., 2016; Joshi et al., 2013; Lai et al., 2019). For autistic adults, the presence of a co-occurring mental health problem has been associated with poorer life outcomes including impairments in adaptive functioning, difficulties with employment and independent living, and reduced quality of life (Farley et al., 2009; Gillberg et al., 2016; Lai et al., 2019). Autistic adults also face a higher risk for suicidality than the general population (Hedley & Uljarević, 2018), and research has found that suicidality is significantly associated with unmet support needs (Cassidy et al., 2018). Until relatively recently, service structures and intervention supports have been largely tailored to children with little recognition of the needs and supports required by autistic adults (Gerhardt & Lainer, 2011; Howlin & Moss, 2012; Shattuck et al., 2012). Autism affects individuals across the lifespan (American Psychiatric Association, 2013) and the autism community has been vocal in calling for increased recognition of this lifespan perspective along with corresponding services and supports across the lifespan (Pellicano et al., 2014). The preponderance of mental health problems and their deleterious effects for autistic adults underscore the importance of enhancing mental health supports for these individuals. Currently, the literature is incomplete when it comes to understanding the needs and preferences of autistic adults who receive mental health support in the form of psychotherapy.
Psychotherapy (used interchangeably with therapy throughout this paper) is a form of psychological treatment with a trained professional that is effective in treating mental health problems like anxiety and depression (Canadian Mental Health Association, 2018). White and colleagues (White et al., 2018) reviewed literature pertaining to the psychological treatment of anxiety and depression in autistic adolescents and adults. Their review incorporated several systematic reviews and meta-analyses that demonstrated moderate to large treatment effects for cognitive-behavioural therapy (CBT) and mindfulness-based interventions in the reduction of anxiety in child and adolescent samples, but noted that much less is known about the psychological treatment of depression. CBT focuses on changing unhelpful thoughts and behaviours that are contributing to emotional distress (Beck, 1970). Mindfulness-based therapies employ meditation techniques that teach people to attend to the present moment (e.g., thoughts, bodily sensations, emotions, environment) in a non-judgemental way (Kabat-Zinn, 1994).
A meta-analysis that included 24 studies examined the efficacy of CBT in reducing symptoms of affective disorders (e.g., anxiety, depression, emotion regulation) in autistic people (Weston et al., 2016). The authors reported a small to large effect size, with variation in treatment effects associated with the type of outcome measure used (e.g., self-report, expert observer). Importantly, only four studies in Weston and colleagues’ (Weston et al., 2016) meta-analysis involved adult participants, three included a mixed group of adolescents and adults, and the remainder were specific to child populations. Cachia and colleagues (2016) identified six studies that met inclusion criteria for their systematic narrative review of mindfulness-based therapies for autistic people. While only two of the studies included in this review were specific to adults, Cachia and colleagues (2016) concluded that mindfulness-based interventions are potentially effective in increasing psychological wellbeing in autistic people. Spain et al. (2015) used a narrative method of analysis, stating that a meta-analysis was not possible due to the heterogeneity of participant characteristics and outcome measures used. The authors reviewed primary research studies published between 1993 and 2013 that examined the efficacy of CBT or mindfulness-based treatment on the reduction of anxiety disorders, depressive symptoms, or obsessive-compulsive symptoms, and identified six studies that met inclusion criteria. Two of the studies were single case studies, one case series, one quasi-experimental study, and two randomized controlled trials. Spain and colleagues (Spain et al., 2015) reported that all studies demonstrated a decrease in co-occurring mental health symptoms following CBT or mindfulness-based intervention.
Unlike research with autistic youth which has multiple systematic reviews supporting the efficacy of treatments for anxiety (e.g., Ung et al., 2015; Vasa et al., 2014), the evidence is less clear for autistic adults. A recent meta-analysis that included 13 studies found inconsistent evidence of whether CBT is effective in treating anxiety in autistic adults and called for additional research (Menezes et al., 2022). The same review also investigated the efficacy of mindfulness-based therapies for the treatment of anxiety in autistic adults, finding positive treatment effects. However, it should be noted that these findings are based on only four studies.
Despite the potential benefits, autistic adults usually do not receive treatment for their mental health problems (Anderson & Butt, 2018). In fact, the presence of an autism diagnosis increases the risk for unmet healthcare and mental health therapy needs (Chiri & Warfield, 2012). Findings from a review of Medicaid claims in the United States demonstrated that autistic adults are more likely to be prescribed a combination of psychotropic drugs and less likely to receive psychotherapy for their mental health problems than non-autistic adults (Maddox et al., 2018). Although many autistic adults don’t receive adequate mental health treatment, this form of treatment has been found to be both beneficial and desired by these adults (Baldwin & Costley, 2016; Camm-Crosbie et al., 2019; Maddox et al., 2019).
The literature has outlined several barriers contributing to the disparity in accessing mental health supports for autistic adults including limited community resources specific to autism and mental health, lack of funding, and service providers who lack the confidence and experience to work with autistic adults (Brookman-Frazee et al., 2012; Camm-Crosbie et al., 2019; Maddox et al., 2019, 2019). Even once autistic adults are able to secure mental health supports, the limited literature suggests that overall, existing mental health supports that serve autistic adults are not meeting their needs. Qualitative first-hand accounts of young autistic adults experiences of seeking mental health care found that the majority of participants sought assistance for their mental health problems, yet few described these services as very helpful (Crane et al., 2019). Overwhelmingly, participants called for mental health services to be better tailored to autistic people, and for the voices and opinions of autistic people to be integrated in the development of mental health interventions (Crane et al., 2019). Similarly, Maddox et al. (2019) reported on barriers and facilitators to quality mental healthcare for autistic adults in a US-based sample and found that 20 out of the 22 autistic adults interviewed reported poor experiences in psychotherapy, with the most commonly cited barrier being clinicians who did not understand autism. Qualitative research has found that autistic adults would like individually tailored mental health treatment and support, yet many identify this as difficult to find (Camm-Crosbie et al., 2019). Given the high preponderance of mental health problems experienced by autistic adults and the expressed need for mental health supports, additional research is needed to further our understanding of how to individually tailor therapy to the needs of autistic adults.
Limited research exists that examines the experiences of autistic individuals in psychotherapy. One recent study by Mazurek et al. (2023) found that autistic adults placed high value on a therapeutic relationship built on understanding of autism and acceptance of the individual, and participants reported growth and better understanding of self as a positive outcome of therapy. However, participants also reported difficulties in therapy, namely communication issues related to verbal communication and difficulty speaking about feelings. The structure of the session potentially caused issues, with clearly defined goals being desired. Additionally, participants appreciated having fidget toys present, as well as having creative tasks incorporated as part of therapy, or pictorial representations of concepts if participants felt those would be helpful (Mazurek et al., 2023).
The present study focuses on the experiences and needs of autistic adults who have received psychotherapy for co-occurring mental health problems within Canada. A qualitative research approach was selected as this form of inquiry gives voice to participants, which is important as autism stakeholders have identified not having their voices heard in research (Gotham et al., 2015; Pellicano et al., 2014). Additionally, qualitative methods can be a valuable approach for informing evidence-based practice (Grypdonck, 2006), revealing gaps in existing service structures or in the delivery of services that may not otherwise be captured by quantitative survey data.
Various authors have actively called for the inclusion of autistic perspectives in research, with the aim of advancing inclusivity in the field of psychology to better reflect the needs of autistic people (e.g., Jellett & Flower, 2023; Spain & Happé, 2019). By obtaining the perspectives of those with lived experience, we may better support the needs of autistic adults. Thus, the aims of this research are to examine helpful and hindering elements experienced by autistic adults in psychotherapy, which has been provided primarily for the purpose of co-occurring mental health problems. The research questions guiding this inquiry are as What are specific experiences that enhance psychotherapy for autistic adults who have received psychotherapy for co-occurring mental health problems?What are specific barriers that impede psychotherapy for autistic adults who have received psychotherapy for co-occurring mental health problems?What do autistic adults wish they had experienced in psychotherapy, but was not available to them at the time of receiving services?
The qualitative method of the Enhanced Critical Incident Technique (ECIT; Butterfield et al., 2009) was chosen as an appropriate method for this inquiry as it is recognized as an exploratory technique (Bedi et al., 2005; Woolsey, 1986) that is useful when little is known about a particular topic (Butterfield et al., 2009; Chell, 1998). More specifically, ECIT studies allow participants to recount personally meaningful events, factors, or incidents that have enhanced (i.e., helping critical incidents), or impeded (i.e., hindering critical incidents) an experience (Butterfield et al., 2009; Kain, 2004). This method invites participants to use their own words to describe critical incidents, which are then systematically sorted and condensed into categories that represent shared meaning amongst participants (Butterfield et al., 2009). Critical incidents are broadly defined as vivid accounts of events, incidents or factors that are viewed by participants as meaningful to a specific activity or experience (Butterfield et al., 2009; Kain, 2004), in this case, psychotherapy. In addition to gathering critical incidents, ECIT studies gather participants’ wish list items, which can include various elements such as information, supports, programmes and/or people that did not exist during their experience in psychotherapy but would have been helpful to them (Butterfield et al., 2009). Given the limited research about the experience of psychotherapy for autistic adults, an exploratory method such as ECIT seemed ideal, and this approach ideally identifies facilitators, barriers, and wished for items.
This study was conducted as part of the dissertation research of the first author (TJW), who identifies as non-autistic and brings over 10 years of experience working with the autism community in various supportive roles. This research was developed in response to TJW’s experience of being trained in mental health intervention with autistic adults and the absence of evidence informing clinical intervention with an adult population. Additionally, reports obtained from autistic community members regarding an absence of high-quality and inclusive mental health care were influential in forming this research. Within the qualitative research paradigm, subjectivity is not be avoided, but rather embraced for its contribution to the creation of research (Hesse-Biber & Leavy, 2011). Accordingly, TJW embarked on this research project with the assumptions that there are changes needed to the ways in which we prepare mental health providers to recognize and work effectively with autistic adults, and a belief that there can be value and profound learning that can occur by listening and incorporating the voices of autistic adults who have direct lived experiences of receiving therapy.
This study received ethics approval from the first author’s university via the Conjoint Faculties Research Ethics Board (CFREB), number REB16–2014. Participants were recruited through poster advertisements at community autism services supporting adult populations, community mental health clinics and counselling centres and healthcare settings within a large metropolitan city in western Canada. Participants were eligible to participate if they were 18 years of age or older, had received an autism diagnosis by a regulated healthcare provider, had received psychotherapy for co-occurring mental health problems within the past six months, spoke English, and possessed the communication skills required to independently participate in an in-person interview. Eighteen years of age was selected as the cut-off age for participation reflecting the age of majority in Canada, while also aligning with existing service programming for adults. Adults interested in participating contacted the first author directly, at which time a brief screening interview was conducted. This screening interview was performed to ensure inclusion criteria were met, participants understood the purpose of the study and the requirements of participating, and were not experiencing imminent mental health concerns (i.e., actively homicidal/suicidal). The researchers had no prior or existing relationships with the research participants. Following this screening, one prospective participant did not meet criteria as they were not able to independently participate in the interview. Another two prospective participants met eligibility criteria, however, did not respond to follow-up scheduling procedures.
A total of eight autistic adults participated in the study. Five adults identified as male, and three identified as female. Participants ranged in age from 23 to 63 years, with an average of 39 years (SD = 15.5 years). Seven participants reported receiving an autism diagnosis in adulthood. Four participants reported a diagnosis of autism spectrum disorder and four reported a diagnosis of Asperger’s syndrome. All participants identified as Caucasian. At the time of the interview, participants reported a variety of living situations with three participants living with parents, two participants living with a spouse/partner, one participant living independently, one participant living with roommates, and one participant identified as homeless. Highest level of educational achievement included two participants who graduated high school, two participants who graduated college (i.e., trade school or a certificate program), two participants who completed some college courses, and two participants who graduated university. With respect to employment, half of participants were unemployed at the time of the interview, three participants worked part-time or casually, and one participant was employed full time. Seven participants provided information on annual household income, with an average of 31, 867; MED = $24,000). Three participants identified receiving government financial assistance as their sole form of income, one participant was receiving unemployment insurance income, and one participant reported being financially supported by their parents.
Participants were provided with the consent form and the interview questions prior to the interview, and told that both the interview questions and follow-up questions would be asked during the interview. Providing these documents ahead of time allowed participants to read over the materials at their own pace, prepare their responses, and rely on learning aids if they deemed this to be helpful (e.g., preparing notes). Informed consent was obtained in person prior to commencing interviews. All eight interviews were conducted in person with the researcher in a private room either at the researcher’s university or at a community autism resource centre. Interviews ranged in duration from 68 to 135 minutes. All interviews were audio recorded and field notes were taken by the first author. Each interview followed the established interview procedures of the ECIT approach (Butterfield et al., 2009). This interview guide began by collecting contextual information about what led participants to seek therapy, the frequency and length of therapy, and the format of therapy received. Following this, the critical incidents and wish list items were gathered using a semi-structured interview guide and follow-up probes that allowed for detailed descriptions of participants’ accounts. Participants were asked to first focus on their potentially positive experiences of receiving psychotherapy and to identify specific events, experiences or incidents. Information about how this specific incident was helpful or important was gathered, followed by the elicitation of examples. Follow up probing questions were used to help elicit the key items of the ECIT the critical incident, importance and an example. Gathering these specific details for each critical incident is intended to enhance the quality and credibility of data gathered through self-report (Flanagan, 1954). This process of inviting the identification of helping critical incidents was continued until the participant was no longer able to recall helping critical incidents.
Following the same line of questions and follow-up probes, participants were asked to recall critical incidents that they believed interfered with psychotherapy going well (i.e., hindering critical incidents) until no new hindering critical incidents were identified. Finally, participants were asked to describe what else would have been helpful in psychotherapy to which they did not have access or did not experience (i.e., wish list items). How these items would have been helpful and examples of when these items would have been helpful were gathered for each wish list item identified (Butterfield et al., 2009).
Each interview was transcribed verbatim, and NVivo 12.2 was used to manage and code the critical incidents and wish list item data. Working directly from each participant’s transcript, critical incidents and wish list items were identified and then extracted. Following ECIT data analysis procedures, a critical incident is considered complete, and thus extracted from the interview, when accompanied by information pertaining to the importance or impact of the critical incident and an example that depicts the incident (Butterfield et al., 2009). A similar process of data analysis followed for wish list items. Critical incidents or wish list items missing this level of detail during the initial interview procedures were flagged for follow-up with participants. Following extraction, the critical incidents and wish list items were subjected to an inductive categorization process that included identifying similarities and differences in the data and placing items into categories accordingly. As critical incidents and wish list items were added to categories, judgements about collapsing, expanding, and generating new categories were made until all the data were categorized into a coherent structure with discrete domains/items. Once all the critical incidents and wish list items were placed into a category, operational definitions of each category were created. A series of checks were performed to establish the credibility of the findings, as described below.
Consistent with the ECIT method (Butterfield et al., 2005, 2009) a series of six credibility checks were performed to establish the credibility of the findings and manage researcher bias. First, all eight interviews were audiotaped and transcribed verbatim to achieve descriptive validity. Second, to ensure consistency in the interview procedures and avoid leading questions, an expert in the ECIT method listened to every third interview to ensure interview procedures were being followed (Butterfield et al., 2005). Third, to assess the reliability of the extraction procedure, an independent judge analysed two randomly selected interviews and agreement rates for extracted critical incidents and wish list items were calculated (Andersson & Nilsson, 1964; Butterfield et al., 2005). Agreement rates were initially calculated at 89% and 81%, however, after further discussion, agreement reached 100% and 91%, respectively. Fourth, participation rates were calculated, meaning that at least 25% of participants had to contribute a critical incident or wish list item to fit within a category (Butterfield et al., 2009). In order to satisfy this check in the current study, at least two participants had to identify a critical incident or wish list item for each category. Fifth, as is customary in the ECIT method, participants were invited to review the critical incidents and wish list items extracted from their interview to determine whether the category names made sense to them and whether their experiences had been appropriately placed into categories that capture their experiences (Butterfield et al., 2009). This cross checking with participants is consistent with respecting participants’ experiences and perspectives (Butterfield et al., 2005). During this check, an additional four critical incidents and wish list items were added to the data set. One participant requested that a critical incident be moved to a different category, and one participant suggested the slight renaming of a category to reflect more inclusive language (i.e., support rather than accommodation). Finally, two experts who cumulatively brought decades of clinical and research knowledge in the field of autism and mental health, were consulted about and confirmed the usefulness, completeness, and novelty of the findings (Butterfield et al., 2009).
Each interview began with the collection of contextual information about participants’ reasons for accessing psychotherapy (see Table I), the format of therapy received, the types of service providers accessed, and the duration and frequency of psychotherapy services. All participants reported receiving individual therapy, with three participants (38%) also having received group therapy, and one participant (13%) having received couple therapy. Six participants (75%) reported accessing a variety of service providers for their mental health needs including psychologists, psychiatrists, counsellors, social workers, psychiatric nurses, and family doctors. Two participants (25%) reported receiving services from only one mental health service provider. The duration of therapy received by participants ranged from 6 months to 26 years (M = 5 years, SD = 8 years, MED = 2 years), typically on a biweekly basis. Participants who had been accessing therapy in excess of one year described accessing therapy in an “on and off” or inconsistent fashion.Table I.Self-reported reasons for accessing psychotherapy.Reasons for Accessing Psychotherapyn%Interpersonal challenges675Depression563Anxiety450Acceptance of autism diagnosis225Substance use225Sleep issues225Obsessive compulsive disorders113Trauma related disorders113Eating disorders113Self-harm/suicidal ideation113Domestic abuse113Note. Participants could identify more than one reason for accessing psychotherapy, thus totals in table >100%.
Participants described a total of 56 helping incidents (38% of the total incidents), 51 hindering incidents (35%), and 40 wish list items (27%). Table II shows the distribution of critical incidents and wish list items across eight categories. Most categories, emerging as broad and discrete elements of salience in participants’ therapy experiences, included a combination of helping incidents, hindering incidents, and wish list items. The following section describes each category along with the corresponding incidents and wish list items.Table II.Critical incident and wish list categories from autistic adults. Helping Critical Incidents (N = 56)Hindering Critical Incidents (N = 51)Wish List Items(N = 40) ParticipantsIncidentsParticipantsIncidentsParticipantsWish List ItemsCategoryn%n**n%n**n%nTrust and Respect78823675132255Pragmatic Approaches and Interventions4501333862252Client Factors45074508000Structure and Delivery of Sessions338745053386Knowledge about Autism2252225356310Support for Individualized Needs225433845637Availability and Access to Mental Health Services000450106758Involvement of Family/Advocate00022522252Note. Participants (N=8); Critical incidents (N=147).
Trust and Respect was the most frequently referenced category and had a total of 23 helping incidents mentioned by seven participants (88%), 13 hindering incidents mentioned by six participants (75%), and five wish list items mentioned by two participants (25%). The helping category included participants’ descriptions of being treated with respect and dignity, feeling understood, feeling heard, and being accepted without judgement. Participants described experiences where they felt genuinely accepted by a mental health provider, where they did not need to filter what might be perceived as “quirky” or inappropriate thoughts or behaviours. A strong sentiment expressed by participants was that when trust and respect were established with providers, participants felt that they could be vulnerable and share their needs and opinions freely. Participant 1 illustrated the importance of understanding and Saying things without needing a filter and feeling accepted. A warm inviting space where I can open up. It’s just good to know or feel like I have someone that I can talk to and I don’t need to filter things. I could turn the filter off and [the mental health provider] just understands.
In contrast, the hindering category was characterized by experiences that diminished trust and respect with mental health providers. Participants described experiences when their voices were not heard, such as having their preferences in treatment ignored or their mental health concerns dismissed by providers. Participants also described experiences where they specifically asked for support with their mental health problems, yet providers were insistent on “fixing” their autism symptoms. Other participants recounted experiences of being blamed for the lack of progress in treatment, and not being believed that they were in distress, or in some instances that they had received an autism diagnosis. According to participants, these experiences diminished their willingness to open up or disclose their diagnosis and decreased confidence that the provider could help them. The following quote from participant 6 is Well fundamentally you know that you’re going into a room with somebody who doesn’t believe you and doesn’t understand you. He has formed his own opinion and based on his opinion of what the issues are he’s going to keep handing you tools out of that particular pile. It really just undermines the ability to get help. And asking for help is not something that comes easily to me and it’s not something I’ve ever done in my life until things got really bad.
Participants wished for more validation, patience, and acceptance of their struggles when seeking support from mental health providers, and to be treated with dignity and respect. Participant 7 described her wish for more Just validation that life is difficult even if they aren’t the person who can help me work through it … . It wouldn’t lead to the suicide thoughts of, “I don’t fit anywhere. I don’t deserve to be human or nobody wants me because I don’t fit anywhere.” There’d be an intrinsic value to my humanity simply by somebody saying, “huh, that is hard.”
The category Pragmatic Approaches and Interventions included 13 helping incidents mentioned by four participants (50%), six hindering incidents mentioned by three participants (38%), and two wish list items mentioned by two participants (25%). The helping category included incidents characterized by a preference for pragmatic approaches and interventions that assisted participants with solving a specific problem or developing a particular skill. Participants identified a range of interventions deemed to meet these criteria including those with cognitive elements (e.g., identifying thinking errors), behavioural elements (e.g., relaxation, grounding, leaving the house), informational components (e.g., education about mental health symptoms, reading material about autism), and those that addressed interpersonal skills (e.g., modelling of social behaviours, boundary setting in relationships). Receiving direct instruction and feedback was also viewed as helpful, as described by participant So, my initial counselling was really focused on returning to work after a leave of absence, so a lot of our discussions were around specifics of identifying what things need to change that are within my control, what things I need to learn to set boundaries with in order to avoid a relapse. So, it was very pragmatic around listing a concern and discussing what I can and can’t do.
Conversely, the hindering category included incidents characterized by approaches and interventions that strongly emphasized emotions, or the use of interventions that did not have logical or tangible outcomes. According to participants, these types of approaches were unproductive as they did not offer new information or skills for participants to address their problem. While most participants did not specify a particular school of psychotherapy that was either helpful or hindering, participant 5 expressed the limited effectiveness of cognitive behavioural therapy (CBT), “I’ve done enough CBT that I knew it wasn’t really hitting home with me.” Some participants also noted that it was unhelpful when mental health providers provided too much reassurance or were overly encouraging in their approach. As participant 1 explained, “I don’t need a personal cheerleader. I want someone with skills and education to help me get skills that I need; to develop the tools.”
Participants wished for therapy to have more practical elements such as learning skills and strategies. In addition, participants requested that mental health providers offer direct feedback and specific information about the problem at hand. Participant 6 I’m really looking for counselling to give me more of a road map in terms of what’s appropriate and not appropriate and strategies that can be used … I want to talk about what’s going on and I’m looking for feedback in terms of “well, so your colleagues are probably receiving it this way.”
The Client Factors category included seven helping incidents mentioned by four participants (50%), eight hindering incidents mentioned by four participants (50%), and no wish list items. The helping category consisted of participants’ attitudes of, and motivation for, therapy as well as personal characteristics that facilitated participants in seeking help and willingness to make personal changes. A positive attitude about one’s mental health symptoms, hope that things will get better, willingness to accept help, and openness to learn and change, were identified by participants as helpful beliefs and attitudes. Several participants identified that it was not necessarily what was discussed in the therapy session that was most helpful, but rather the work that they did on their own following a session that was the most valuable. Personal values such as family and personal growth were identified as strong motivators for seeking help and willingness to change.
The hindering category included participants’ beliefs that they were undeserving of help or that therapy would be ineffective. Participants also identified their own thought processes such as polarized thinking, judgemental thoughts, and stubbornness as interfering with both accessing and making progress in therapy. Discomfort with experiencing emotions and challenges with identifying and articulating emotions also reduced participants’ willingness to engage in therapy. Participant 3 spoke about the anticipatory anxiety they experienced leading up to a therapy session, which could interfere with his ability to attend I don’t get enough sleep before going [to therapy] because I’m rehearsing in my head what I’m going to say to the counsellor and then rehearsing what I’m expecting them to say back and forth, and then it ends up not even going in that direction. I just end up losing sleep over wondering how to explain myself or to justify the decisions that I’ve made. Constantly expecting to be under scrutiny and then obsessing over that because you’re anticipating the scrutiny, but then the scrutiny never really happens.
The Structure and Delivery of Sessions category had a total of seven helping incidents mentioned by three of participants (38%), five hindering incidents mentioned by four participants (50%), and six wish list items mentioned by three participants (38%). The helping category included incidents characterized by continuity in care (e.g., appointments booked on the same day of the week or at the same time, consistent time intervals between sessions, working with the same mental health provider). This consistency offered participants the predictability they needed so they could better know what to expect and prepare accordingly. With respect to the delivery of sessions, participants also expressed a preference for having the expectations of therapy stated in clear and direct terms. Participant 8 explained the kind of preparatory information that she finds helpful in Knowing what the therapy is going to entail, what we’re going to be working on and what sort of things I should have in mind for our appointments. Things to think about and what sort of questions the [mental health provider] will be asking or want to know.
The hindering category captured incidents characterized by therapy sessions with an absence of structure including mental health providers who relied on participants to direct the flow of sessions or come up with spontaneous content. While consistency in scheduling sessions was viewed by some participants as a facilitator, some participants also found this consistency to be a barrier at times. Participant 4 The routine was also a double-edged sword at times … Just because I knew that it was every Wednesday at 00, it was also like, it’s every Wednesday at 00, in the sense of I have to book everything around it too. That part sometimes was frustrating. It was like I knew the routine, but it was like I have to get this stuff ready for the next session.
Participants wished for more structure and predictability in psychotherapy sessions such as being explicitly told how the therapy process would unfold, what is expected of them, what they can expect from the mental health provider, and guidelines for how to manage specific situations (e.g., how to take a break if needed). To help enhance predictability, participants suggested that the procedures be written down so they could be easily referenced. Participants also wished that mental health providers would be more directive and lead the process in therapy, rather than relying on the participant, as client, to spontaneously come up with content. Finally, participants wished for a balance between consistency and flexibility, specifically with respect to scheduling sessions. Participant 3 articulated his thoughts for how this might be Sometimes I may not want to talk for long periods of time because if I get too involved, I get stressed out and then I get all these negative emotions coming up. So perhaps initially, it would be good to just have shorter sessions and then get longer and longer as I build more trust and a better relationship with the counsellor. So, like start with frequent 20 minutes and then maybe half an hour and then 40 minutes, and then an hour and then perhaps start spacing them out even more.
The category Knowledge about Autism included two helping incidents mentioned by two participants (25%), three hindering incidents mentioned by two participants (25%) and nine wish list items mentioned by six participants (63%). The helping category consisted of mental health providers who were knowledgeable about autism, including knowledge of common characteristics and qualities, which contributed to participants feeling understood and having their struggles accurately recognized. Participant 5 And one of the best social workers that I’ve seen … has a good understanding. I may come across as looking normal and that, but there’s obviously some parts of me that don’t quite pick up on everything the way normal people should.
The hindering category was characterized by mental health providers who lacked foundational knowledge about autism. In particular, participants described a lack of knowledge about the social and communication challenges experienced by autistic people, how these challenges can manifest, and how these challenges may contribute to or exacerbate mental health problems. For participants, the absence of this knowledge often led to misconceptions or erroneous information about autism that led to poor quality care. Participants identified a shortage of providers who understood that autistic adults can also experience mental health problems, and that autistic people may not demonstrate their distress in the same fashion as non-autistic adults. The outcomes of this lack of knowledge led to participants’ mental health problems being overshadowed by their autism diagnosis or simply dismissed. Participant 6 illustrated this My therapist assured me that I’m managing fine because I’m able to sit in that room and not run away. But again, that seems to be a lack of understanding that with autism the internal and the external are regularly mismatched. So, the fact that I’m sitting in that room doesn’t mean that I’m fine.
Participants wished for more funding to support research specific to the needs of autistic adults that would hopefully lead to knowledge generation. Moreover, participants expressed that knowledge of autism needs to be more accessible to the public so that society as a whole can develop a better understanding. With respect to mental health providers, participants wished more providers would become knowledgeable about important issues in autism like camouflaging and masking and how convincing yet draining these strategies can be, as well as different expressions of body language and social communication styles that should not be assumed to mean disinterest or disengagement. Some participants expressed that they didn’t mind sharing information about autism with uninformed providers (although this sentiment was not unanimous), but wished there were specific evidence-based resources they could readily draw upon to ease this process. Participants voiced that simply learning about autism from a book was not sufficient to understand autism, and they wished providers would take the time to consult with autistic people and learn directly from their experiences. According to participants, increased knowledge about autism would hopefully lead to more appropriate mental health care, dispel misconceptions and stereotypes, and ultimately lead to more acceptance of autistic people within society. Participant 2 articulated his wish for mental health providers to do more “on the ground” Get out there and you know, come to these [autism support] meetings. I’ve never seen any other doctors or professionals or guidance people come to these meetings. Go to some of these discussion groups that autistic people facilitate; come in and observe. Then maybe you know, you’ll be more aware as opposed to just book learning.
The Support for Individualized Needs category included four helping incidents mentioned by two participants (25%), four hindering incidents mentioned by three participants (38%), and seven wish list items mentioned by six participants (63%). The helping category included participant accounts of working with mental health providers who supported their own unique needs. For some participants, this included allowing extra time in sessions for them to process information and find their own words. For others, this meant supporting participants to communicate in alternative ways, such as through emails and text messaging.
Conversely, hindering incidents in this category were characterized by experiences in which participants did not feel that their individual needs were supported by mental health providers or mental health agencies. Participants described times when they felt “pushed along” in therapy and not given adequate time to find their own words or process their thoughts. Participants also recounted experiences of when they were denied accommodations for their sensory sensitivities. The absence of this support left participants feeling invalidated and, in many instances, led to the premature ending of therapy. Participant 7 described her experience of unsuccessfully seeking accommodations in a group therapy “We don’t deal with developmental disabilities here, so if you want to participate in our program we can’t offer you any accommodations, you’ll have to participate like everyone else.” That was the response I got from a group I tried to attend where all I did was ask could you tell me the topic that we’re going to have next week so that I can come already thinking about it?
Participants explained that in person sessions and phone calls were difficult for them, and thus wished for more opportunities to connect via online mediums, such as an online appointment booking system, email and text communications. Participants wished that mental health providers would deliver support outside of the constraints of the therapy office, such as advocating for participants individual needs in the community and workplace. Finally, an openness to alternative approaches in therapy and listening to the client’s preferences in treatment were wished for. Examples of alternative approaches included conducting therapy sessions outdoors in nature and incorporating animals in therapy.
The category Availability and Access to Mental Health Services included a total of 10 hindering incidents mentioned by four participants (50%) and eight wish list items mentioned by seven participants (75%), with no helping incidents in this category. The hindering category included participant accounts of the lack of publicly funded mental health services that were tailored to the needs of autistic adults. Participants described instances where they were turned away from services because their mental health symptoms were not perceived to be severe enough, or times when their autism diagnosis precluded them from accessing a mental health program altogether. Conversely, participants identified being inappropriately referred to programmes for people with intellectual disability, and to programmes that were unprepared to address participants’ mental health concerns. Participants described further challenges with accessing mental health supports including long wait lists and few mental health providers who understood both mental health and autism. When participants were able to locate autism-savvy mental health services, the cost of services prohibited accessing them long term or at all. Participant 7 described the struggle she experienced in trying to access mental health I might not fit the mandate for one group because I am someone with autism. I don’t have an addiction. I might have some compulsions or obsessions … but those aren’t addictions. I’m not in mental health crisis because I’m not suicidal. And then I can’t access the supports through persons with developmental disabilities or delays because my IQ is too high. I don’t qualify for a community support worker. I’m too smart for developmental disability programs and I’m not sick enough for, or in crisis enough for mental health [services]. So where do I fit?
Participants wished for more affordable, government subsidized mental health services, in addition to greater access to these services. One participant identified driving more than six hours to attend an appointment with her psychiatrist, and wished that services were available locally. Some participants wished that they could have accessed services that allowed for an earlier diagnosis of autism, believing that this diagnosis would have facilitated access to community supports and earlier intervention that would have helped ward off the mental health problems that emerged for them during adulthood. Participants also wished for crisis services that were specific to the needs of autistic people and regular access to mental health services when required. Other participants wished for more mental health services that were inclusive of autistic people—especially for autistic teens and adults, and they wished that these programmes were in existence when they needed them.
The category Involvement of Family/Advocate included two hindering incidents mentioned by two participants (25%) and two wish list items mentioned by two participants (25%), with no helping incidents. The two hindering incidents captured within this category described peripheral family involvement where in one instance, a participant spoke about feeling pressured into therapy by family members even though he didn’t believe therapy was needed, while another participant described ongoing conflict with his mother about the effectiveness of therapy. Participant 4 explained the conflict with his My mom didn’t think that the counselling was working, when to me it was. My mom doesn’t get the self-confidence that I came out of [therapy] with … I walked out no longer feeling worthless after, but she thought I needed to go to therapy for other reasons, for what she thought I should do it for, not what I needed to do it for.
Family involvement in therapy was wished for when there was conflict within the family system, as one participant believed that working with the family would help to work through the issues causing conflict. Another participant described the presence of a support person or advocate as advantageous in therapy as the support person could help clarify information, provide emotional support, and speak up for the adult client’s needs. Referring to this helpful role, participant 2 Having an advocate is something; maybe the advocate can re-direct the question or re-phrase the question because the advocate knows the client more. They would be there to help with my confidence. To know you’re not here alone and you’re not under attack. And if you’re under attack I’ll speak up for you.
The aim of this qualitative study was to explore autistic adults’ experiences in psychotherapy when receiving this support for co-occurring mental health problems. Collectively, the findings from this research reveal that psychotherapy with autistic adults in some ways is analogous to performing this work with non-autistic adults, in the sense that this work too entails elements of individually tailored treatment and the reliance on common therapeutic factors. Nevertheless, there are also differences relative to providing psychotherapy for autistic adults that necessitate providers having foundational knowledge about autism. Findings from this research identified almost an even distribution of helpful incidents that contributed to positive experience in therapy and hindering incidents that reduced the quality of experience in therapy. Participants’ wish list items suggest that there is more that can be done in the psychotherapy context to enhance the quality of the therapeutic encounter and the resulting experiences for autistic adults.
The largest helping category, Trust and Respect contained incidents that align with the construct of the therapeutic relationship. This relationship can be thought of as the trusting connection between therapist and client that develops through therapist empathy, collaboration, communication, understanding and respect (Leach, 2005). Research abounds on the therapeutic relationship as an integral component of successful psychotherapy with non-autistic populations (Ackerman & Hilsenroth, 2003; Ardito & Rabellino, 2011; Horvath et al., 2011). Much less is known about the role and outcomes associated with the therapeutic relationship with autistic adults. Of the limited literature available, some authors have suggested that the therapeutic relationship should not be the basis of clinical work with autistic people (e.g., Hare & Flood, 2000). Others have discussed more concrete ways that the therapeutic relationship can be attended to, including matching clients’ language (Anderson & Morris, 2006) and avoiding confronting clients about what is perceived as odd or eccentric behaviours (Gaus, 2011). Hume’s (2022) qualitative research interviews with 17 autistic adults about relationship building experiences in therapy found that not only are Rogerian conditions such as empathy, non-judgement, unconditional positive regard, important relationship building conditions, but these factors may be even more important with autistic clients.
The findings from this research offer support for the importance that autistic adults, like non-autistic clients, place on establishing a strong alliance characterized by empathy, acceptance, understanding, trust, and respect. In the absence of these therapeutic qualities, participants were less likely to be vulnerable in sessions, felt their attempts to get help were undermined, and were less likely to disclose important information such as their autism diagnosis. These findings are consistent with previous research that has found that not being believed or listened to by mental health providers leads to a loss of trust and reduced disclosure (Camm-Crosbie et al., 2019; Crane et al., 2019). For mental health providers, establishing trust is vital for meaningful therapeutic work to occur and the creation of an atmosphere of open dialogue. It is concerning that participants did not feel they were believed or listened to, which in turn, resulted in an unwillingness to disclose their autism diagnosis. For mental health providers, it is important to be aware of a client’s autism diagnosis, not because these characteristics need to be the focus or target of treatment, as fervently expressed by participants in this research and elsewhere (Maddox et al., 2019), but as an important consideration to aid with case conceptualization and treatment planning (Maddox & Gaus, 2019). As asserted by Jellett and Flower (2023), autism research has focused too heavily on specific factors in therapy, while overlooking more common therapeutic factors, like the therapeutic relationship.
Participants indicated a preference for therapy approaches and interventions that logically fit the problem at hand and provide participants with direction, skills, or strategies. When the outcomes of interventions were vague or did not logically match the outcomes, participants reported these approaches to be unhelpful. The kinds of interventions participants believed worked well for them could be inclusive of a cognitive behavioural therapeutic style. If this were indeed the case, it would be unsurprising given that CBT has been the most widely studied psychotherapeutic intervention used to treat co-occurring mental health problems with autistic adults (Spain et al., 2015; White et al., 2018) and clinical guidelines regard CBT as best practice in treating co-occurring mental health problems with autistic adults (National Institute for Health and Care Excellence, 2012). While this finding may be unsurprising, it is inconsistent with previous research that has found that community mental health providers are often reluctant to begin CBT treatment with autistic clients (Maddox et al., 2019). Of note, it is not known what theoretical orientation mental health providers drew upon in their work with participants in this study; hence, we cannot definitively comment on therapeutic orientation.
Importantly, not all participants spoke about the helpful nature of pragmatic approaches or interventions when recounting their experiences in therapy, and only half of the sample identified incidents suggestive of CBT-based interventions, with one participant explicitly stating this approach was ineffective for them. Previous research has demonstrated that not all autistic adults prefer nor find CBT to be effective for them (Crane et al., 2019). Despite the propensity towards CBT-based interventions for mental health problems in autistic adults, it is also the case that we know little about alternative forms of treatment that may be effective and/or preferred by autistic adults. Future research needs to examine the efficacy of alternative modes of treatment and, as suggested by Crane and colleagues (Crane et al., 2019), to involve autistic adults in the development of mental health interventions. There will likely not be a “one size fits all” treatment approach, nor should there be, but hopefully further study can lead to an expansion of mental health interventions that providers can draw from to better meet the individual needs of autistic clients.
Difficulties with introspection have been theorized as a barrier to change in autistic people (Anderson & Morris, 2006; Spain et al., 2015). In contrast to this notion and unique to the findings in this study, participants had a noteworthy level of introspection, as several identified their own cognitive processes, such as attitudes and beliefs, along with behaviours that both facilitated and hindered their experiences in therapy. This is dissimilar from previous research that has been unable to identify client-level barriers directly from the perspective of participants (Maddox et al., 2019). As all participants in this study had some level of engagement in psychotherapy, it is possible that these introspective skills were developed or enhanced through the therapy process. Understanding the degree of introspection autistic clients possess rather than assuming these processes are simply inhibited in autistic adults is important. From a clinical standpoint, identifying how one’s internal processes (e.g., beliefs, motivation, attitudes, values) may be contributing or interfering with progress, experience, or engagement in treatment is certainly valuable and lends to establishing viable treatment goals.
Concurring with wider opinion, findings from this research support the adherence to a structured therapeutic approach and making procedures and information explicit in the therapy context (e.g., Anderson & Morris, 2006; National Institute for Health and Care Excellence, 2012; Spain & Happé, 2019). Executive functions, which include the ability to plan, organize, and prioritize, have been found to be impaired in autistic people (Hill, 2004). Therefore, external forms of structure and organization can help compensate for these challenges (Anderson & Morris, 2006). Several participants identified the importance of continuity in care, which allowed participants to anticipate and prepare for upcoming sessions. While this continuity was welcomed by many, it also presented some unintended consequences for at least one participant in this study who identified that planning around therapy sessions elicited frustration and additional work. This experience was unique to just one participant in this study, nonetheless it demonstrates that individuals will experience and respond to what “should” be helpful in multiple and varied ways, thus underscoring the importance of recognizing individual differences within the autism community and potential therapeutic processes available.
Participants offered several recommendations generated from wish list items for how to enhance the structure and delivery of therapy sessions such as spelling out the expectations and procedures for therapy, even going as far as writing them down and having them in a handy place to reference. Despite a general preference for consistency in both structure and delivery of sessions, participants expressed that there also needs to be flexibility. Indeed, others have identified the need for flexible appointment times and a flexible clinical style when providing psychotherapy for autistic adults (e.g., Spain & Happé, 2019).
Recognition that autistic adults are individuals that come to therapy with individual experiences, needs, preferences, and opinions was identified in the findings of this research. Participants recognized a range of personal needs and preferences that either were or were not honoured in therapy. Examples of the differences in needs include individual sensory sensitivities, information processing differences, affinity with certain forms of communication, and preferences for specific treatments. Importantly, when participants experienced their individual needs as recognized and supported in therapy, they felt accepted and validated. These findings are consistent with the work of Camm-Crosbie et al. (2019) who found that individually tailored and appropriate mental health treatment led to experiences of empowerment, autonomy, inclusion and decreased suicidal ideation. While existing literature and clinical guidelines can generally inform types of interventions, therapeutic approaches and adaptations to work effectively with autistic adults, these should be recognized as broad stroke approaches that must be tailored to fit each individual. It is incumbent upon mental health providers to assess and as much as possible, attend to the individual needs of autistic adults. Indeed, without these individual differences in mind, providers risk using insufficiently focused and/or misguided approaches, with potentially deleterious consequences which could lead to devastating outcomes.
Despite the fact that all the participants in this study had received some form of psychotherapy for their mental health problems, one of the largest hindering categories was in regards to the availability of, and access to, appropriate mental health services. Given that only one participant in this study was employed full time, half were unemployed, and three were underemployed, it is unsurprising that finances were a significant barrier to accessing mental health care. Previous works have identified high unemployment and underemployment rates for autistic adults (Gotham et al., 2015; Nicholas et al., 2018), which will have a direct impact on the ability to access fee-for-service mental health care. The barriers of cost, long wait lists, and inexperienced service providers identified by participants in this study are echoed in other studies (Canadian Autism Spectrum Disorders Alliance, 2014; Maddox & Gaus, 2019; Maddox et al., 2019).
A common sentiment expressed by participants in this study was difficulty fitting into prescribed systems of care that have not been designed for autistic people. Participants described uncoordinated care and poor communication between mental health and developmental disability systems. Although autism falls into the category of a developmental disability, Canadian developmental disability programmes generally require a person to have significant cognitive and adaptive functioning limitations, which will not be present for a large portion of autistic adults (Croen et al., 2015; Lai et al., 2014). Participants’ frustrations with trying to locate appropriate services and feeling tossed around and adrift, are not uncommon among autistic adults (Camm-Crosbie et al., 2019; Maddox et al., 2019). This phenomenon has been coined by Maddox and Gaus (2019) as being “punted” between systems. These authors speculate that this punting occurs at least in part because mental health providers do not believe they know how to effectively work with autistic people and believe that autistic people would be better served by programmes and service providers who specialize in service to autistic people. Yet, programmes that “know” autism well, like developmental disability programmes, may experience the opposite problem in perceiving themselves insufficiently equipped to support mental health problems (Maddox & Gaus, 2019).
As participants described in this study, the result of such siloed, uncoordinated systems of care, is that autistic adults are left vulnerable and underserved. The needs of autistic adults are complex and thus require multifaceted solutions and systems of care that are inclusive, integrated and able to recognize and address a range of health and mental health issues for these individuals (Lin et al., 2019). Furthermore, improving communication and coordination between systems of care is important, and investigation into how this may be conducted is sorely needed (Maddox et al., 2019).
Family involvement was perceived to be both a barrier and something that was wished for in therapy, with no participants identifying family involvement as a facilitator in therapy. An older age demographic, like the one present in this sample (M = 39 years), may render family involvement less viable or impossible if one’s parents are not the primary supporter and/or are elderly or deceased, if one is geographically separated from family, or if one is not partnered nor has children. However, three participants in this study reported living with their parents and two participants identified living with their partner and children. The absence of family involvement as a helpful factor in therapy may be explained by the fact that no participants had actually received family therapy and only one participant identified that they had received couple therapy. For the two participants who mentioned peripheral family involvement, this was perceived to be an unhelpful experience due to conflictual ideas amongst family about treatment outcomes and feeling pressured into therapy by family. Previous research has found that autistic adults tend to seek psychotherapy at the encouragement of family members or significant others, often due to challenges navigating the social demands of their adult lives (Ramsay et al., 2005). How such encouragement offered by a concerned family member and received by the adult recipient can certainly influence one’s experience in seeking help.
Interestingly, only a small number of participants wished for the inclusion of family or a support person in the therapy process. The literature describes some controversial opinions about the inclusion of family members in therapy in for autistic adults. Clinical guidelines suggest that family members be involved in therapy when mutually agreed to by the autistic adult (National Institute for Health and Care Excellence, 2012), while other experts exclude the notion of family-focused work, preferring instead to include just a significant other when appropriate (Spain & Happé, 2019). Interestingly, previous research identified that many mental health providers who work with autistic individuals involve family members in therapy, however this research did not provide information about how family members were involved and for which populations (e.g., adults, children; Cooper et al., 2018).
It is unclear why so few participants identified family involvement as something that may benefit them if it was available. Perhaps adults in this study wanted to exert their independence, as past research has noted the importance that autistic adults place on being able to remain as independent as possible in their adult lives (Griffith et al., 2012). In the field of social work, clinicians have described the utility of combining individual and family interventions to help with problem solving skills and to reduce conflict in the home (Munro, 2010; Stoddart, 1999). Given that many participants in this study identified interpersonal challenges as a main source of stress, investigating if and how the family system contributes to these challenges, and how this system can in turn benefit from a family systems model of care may be warranted.
The findings from this research highlight the need for increased training and education for mental health providers, a finding echoed by previous research (Brookman-Frazee et al., 2012; Camm-Crosbie et al., 2019; Maddox et al., 2019; Nicolaidis et al., 2015). Participants in this study expressed a need for mental health providers to be knowledgeable about the core features of autism. More specifically, participants described the importance of mental health providers having knowledge of behaviours like camouflaging or masking, different expressions of body language and social communication used by autistic people, and recommended that providers become knowledgeable about autism and mental health. Without this knowledge, participants felt that mental health providers had misconceptions or erroneous perceptions about autism, which led to poorer experiences in therapy and less effective treatment.
Importantly, individual differences were observed with respect to how providers should obtain this knowledge as some participants expressed a willingness to share information about autism with uninformed providers, while others believed this was not their responsibility. Participants also identified that theoretical or “book” learning about autism was insufficient to establish knowledge and understanding, with participants calling on providers to consult with them directly and learn from autistic adults’ experiences firsthand. While improving the state of knowledge of autism within the mental health community is certainly warranted based on these and other findings, previous research has hypothesized that the training and education of mental health providers alone is likely insufficient to produce meaningful changes in the provision of mental health care for autistic people (Maddox et al., 2019). Nicolaidis et al. (2015) contended that in delivering effective healthcare to autistic adults, clinicians should not only rely on knowledge of autism, but also attend to other processes that influence how care is delivered by critically reflecting on and, as needed, transforming clinician attitudes, skills, and behaviours.
The current exploratory study has several limitations and delimitations. Most participants identified as Caucasian, many had achieved some level of post-secondary training, and all but one participant was diagnosed with autism in adulthood. Furthermore, participants were recruited from community services and healthcare centres within a large metropolitan city in western Canada, and all participants self-selected to participate. The aforementioned characteristics may have led to experiences in psychotherapy, and/or access to mental health care that qualitatively differ from those who did not participate, and thus are not representative of all autistic adults.
While inclusion criteria stated that participants had to have received psychotherapy within the past six months, they retrospectively reflected on and self-reported their experiences which may be subject to recall bias. Further eligibility criteria for this study required that participants be able to independently participate in an interview, thus the verbal and cognitive abilities of this sample do not capture the range of abilities across the autism spectrum.
While qualitative research customarily has smaller samples relative to quantitative research, the sample is smaller than expected due to time constraints and recruitment challenges. Some of these challenges included difficulty with scheduling interviews with prospective participants, reduced recruitment due to only including participants who could independently participate, and the researcher moving across the country for a pre-doctoral internship (hence, ending recruitment at a fixed point in time). While independence in completing an interview was initially included as a criterion for participation so as to replicate the one-on-one dynamic usually carried out in a psychotherapy encounter, future research may benefit from including a family member or support person to perhaps more fully ascertain potential facilitators and barriers in therapy for a wider diversity of autistic adults (e.g., those with intellectual disability and minimally verbal individuals). Participants’ autism diagnosis and mental health problems were collected via self-report, and while this practice is consistent with other research (e.g., Maddox et al., 2019; Tint & Weiss, 2018) it may be valuable to additionally include measures that confirm autism and mental health symptomology in future studies. Future research may also include treatment records and/or the corroboration of mental health providers to identify specific interventions utilized and treatment methods employed in conjunction with participants experiences and satisfaction in therapy. Notwithstanding these delimitations, this exploratory research offers an important contribution to the literature, including clinically-relevant recommendations for mental health service providers.
Mental health providers should attend to the therapeutic relationship by employing foundational therapeutic skills of listening, empathizing, and validating. While the quality of the therapeutic relationship may vary with autistic clients, they are certainly worthy of our respect, acceptance, and non-judgement.
While CBT based interventions have been found to be effective for treating predominantly anxiety and depression in autistic adults, mental health providers should appreciate that this approach may not be effective nor preferred by every autistic client. At the outset of therapy, mental health providers should inform autistic clients (just as they would with non-autistic clients) of their therapeutic style, provide a general overview of how their approach works, and learn about the client’s treatment preferences. It may seem challenging and possibly unethical for clinicians to veer from CBT approaches in light of the limited evidence supporting alternative approaches, however, continuing to deliver services that are individually ineffective or go against a client’s wishes also pose risks of harm and unethical practice.
Mental health providers may consider the benefit of including family members or support persons in the therapy process, either directly or peripherally. It would be prudent to discuss the risks and benefits of doing so with each client and obtain proper consent for such involvement. Consideration regarding how family members or other informal supports can best be included in the therapy process in ways that meet the needs and offer support to the adult client is important.
Many systemic barriers continue to proliferate within the health care sector, government systems and the broader community that impact autistic adults’ ability to access mental health care. It is crucial that resources and systems are reconfigured to include more multifaceted levels of care that recognize the complex needs of autistic people. Lack of coordination amongst healthcare systems is problematic and requires improved coordination and communication. This change can start at the individual level, with mental health providers familiarizing themselves with the overlap of mental health and autism. Advocacy is needed within our communities to enhance understanding, change negative attitudes, and ultimately work towards the inclusion of autistic people within all facets of society.
Deeper consideration is needed about the range of additional Social Determinants of Health barriers, comprising the structural inequalities that are embedded within Canadian society that impact one’s health (e.g., income, education, employment, gender, race, etc.). How these variables intersect to influence autistic adults’ therapeutic experiences and outcomes, as well as proactive means of addressing these potentially intersecting challenges may need to be integrated in therapeutic plans and strategies.
Education about autism for mental health providers and society at large, is needed. There is great need for more accurate and varied depictions (e.g., range of abilities, genders) of what it means to have an autism diagnosis, which could be taught in training programmes and mental health settings, and depicted in the media. Concerted efforts are needed to prevent misconceptions, reduce stigma, and promote acceptance.
Therapy should be individually tailored to meet the needs and preferences of each individual client. As a foundation, mental health providers need to possess knowledge of both core diagnostic characteristics (e.g., social communication, sensory) and ancillary characteristics (e.g., verbal, cognitive, executive functioning limitations). Additionally, there needs to be thorough assessment of a client’s mental health symptoms as they relate to, and may be distinct from, autism characteristics. Mental health providers need to use sound clinical judgement to understand and incorporate individual needs and preferences in therapy including the structure of therapy, delivery of sessions, consideration of sensory needs, etc.
This study aimed to investigate the facilitators, barriers and wished for items that autistic adults identified, based on receiving psychotherapy for mental health problems. The findings from this research add to the limited literature about the experiences and needs of autistic adults in therapy, while also informing clinical practice for mental health service providers, future research, and policy planning. The experiences identified by participants in this study demonstrate that positive experiences in therapy are possible, although there is substantial room for enhancing this care. This research demonstrates the value of learning directly from the experiences of autistic adults who have valuable insights to share with the mental health community that can directly and meaningfully impact upon the delivery of mental health care for autistic adults.