“Oh,you couldn’t be autistic”: Examining anti-autistic bias and self-esteem in the therapeutic alliance

Abstract

Presently, most mental health practitioners in the United States are educated, trained, and employed in a system focused on curing or changing autistic people. As a result, mental health practitioners may exhibit anti-autistic bias—any form of bias that degrades, devalues, or others autistic people or traits—when engaged with autistic clients. Since the collaborative relationship between therapist and client, termed the “therapeutic alliance,” is often viewed as the most influential element of therapeutic effectiveness, our phenomenological study examined 14 autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they perceive it has on their self-esteem. Findings, determined through thematic analysis, reveal implicit, unintentional bias was manifested through clinical assumptions about autism, explicit, overt bias was expressed through feelings of intentional harm, and repair of self-esteem was shown through positive alliances. Based on the findings of this study, we offer recommendations to help mental health practitioners and mental health practitioner training programs better serve autistic clients. This study addresses a significant gap in current research on anti-autistic bias in the mental health field and the overall well-being of autistic individuals.

Lay Abstract

Many mental health practitioners in the United States are trained to cure or change autistic people. Some of these mental health practitioners may show anti-autistic bias when working with autistic clients. Anti-autistic bias is any kind of bias that degrades, devalues, or others autistic people or autistic traits. Anti-autistic bias is especially problematic when mental health practitioners and clients are engaged in the therapeutic alliance, which is the collaborative relationship between a therapist and client. The therapeutic alliance is one of most important parts of an effective therapeutic relationship. Our interview-based study examined 14 autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they felt it has on their self-esteem. Results from this research showed that some mental health practitioners expressed hidden and unrealized bias when working with autistic clients, such as making assumptions about what it means to be autistic. Results also showed that some mental health practitioners were intentionally biased and openly harmful to their autistic clients. Both forms of bias negatively affected participant self-esteem. Based on the findings of this study, we offer recommendations to help mental health practitioners and mental health practitioner training programs better serve autistic clients. This study addresses a significant gap in current research on anti-autistic bias in the mental health field and the overall well-being of autistic individuals.

Keywords

autism bias mental health self-esteem therapeutic alliance

Since autism became a diagnosis in 1980, mental health practitioners (MHP)¹ and researchers have devised treatments, studies, terms, organizations, and goals for the autistic community—most commonly without the input of autistics (Bennett et al., 2018; Pellicano et al., 2014). The philosophical and theoretical underpinnings for these choices are usually situated in the medical model of disability, as seen in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which is used by MHPs in the United States to diagnose mental disorders (American Psychiatric Association [APA], 2013). This model characterizes autism spectrum disorder² through deficits in social reciprocity, communication, sensory processing, and flexibility, without acknowledgment of the strengths of this community (APA, 2013) and seeks to eradicate these differences to obtain the vague, and elusive status of “normal” or “well” (Swaine, 2011). Unlike the social model of disability, which regards autism as a diverse, intersectional identity, the medical model pathologizes difference and places undue importance on conformity to norms constructed by the dominant group, which, in the United States, is non-disabled, straight, cisgendered, white men (Slesaransky-Poe et al., 2014). The field of psychology was pioneered by such individuals, and the field of mental health care has upheld this hierarchy by curtailing its concepts of illness to dominant societal standards (Albee, 1996; Ballard, 1995; Spates, 2012).

The medical model’s negative characterization of autistic individuals³ for their inability to adhere to norms is an example of anti-autistic bias. Anti-autistic bias is any form of implicit or explicit bias that degrades, devalues, or otherizes autistic people or traits (as seen in: Ashby & Causton-Theoharis, 2009; Botha et al., 2020; Taylor, 2018) and constitutes a form of ableism. While implicit bias unintentionally occurs outside of one’s awareness and can affect a persons’ affect and behavior (Blair et al., 2001), explicit bias is processed neurologically on a conscious level and is characterized by intentional behavior and often overt acts (National Center for Cultural Competence, n.d.). Research indicates that MHPs often bear anti-autistic bias and a general lack of competency with the autistic population, which includes significant negative implicit bias toward autistic clients in comparison to neurotypical children (Kelly & Barnes-Holmes, 2013); practices that are oppressive to autistic people (Hodge, 2013); and use of anti-autistic language (Como et al., 2019).

Relatedly, most MHPs in the United States are educated, trained, and employed in a system that pathologizes autistic people. The professional culture of the mental health industry systemically erects a hierarchy in which the “sick” patient is beholden for a cure from their practitioner, who is supposed to be impervious to any mental health concerns or neurodivergences of their own (Brisenden, 1986). Other societal factors, such as racism and classism, can further the tendency of individual practitioners to unquestioningly assume a superior stance over their patients (Maharaj et al., 2021; Slesaransky-Poe et al., 2014). When working with neurodivergent clients, the result of this dynamic is often an unconscious or uncritical acceptance of anti-autistic bias, which can manifest itself on an interpersonal level in the therapeutic alliance (Beecher et al., 2004). The therapeutic alliance is defined as the “holistic collaborative aspects of the therapist–client relationship” and is one of the most essential factors to therapeutic intervention effectiveness, regardless of theoretical orientation, or other factors (Flückiger et al., 2018, p. 317). In a strong therapeutic relationship, the MHP is empathic, compassionate, nonjudgmental, genuine, authentic, present, and exhibits unconditional positive regard toward the client (Hill, 2020). According to Flückiger et al.’s (2018) meta-analysis of 295 studies with 30,000 participants, the therapeutic alliance accounts for 35% of overall therapeutic effectiveness, making it the most impactful therapeutic factor (Flückiger et al., 2018); this meta-analysis, however, did not identify whether participants were neurotypical or neurodiverse. A strong therapeutic alliance has the potential to improve client’s self-esteem throughout the course of treatment and is correlated to a lower depression symptom severity in follow-up studies, even when within-treatment symptom change is controlled for (Aafjes-van Doorn et al., 2019).

A lack of formal training or framework for counseling competencies for the autistic population presents an additional barrier to cultivating an effective therapeutic alliance. Lipsinki and colleagues’ (2021) research involving 489 adult-patient psychotherapists revealed that the sample had less formal education and competency in diagnosis and treatment of autistic patients than any other diagnoses surveyed; the participants espoused outdated ideas and misconceptions about autism due in part to lack of additional training but were interested in receiving more education.

Some MHPs struggle to form therapeutic alliances with autistic clients, often because of bias or ignorance (Beecher et al., 2004). According to Milton’s double empathy problem, social communication issues are bi-directional, and neurotypical practitioners might have just as much difficulty comprehending the social nuances of autistic people as autistic people do to them (Milton, 2012). Practitioners can intentionally or unintentionally assume that the autistic person is the only one who needs to adapt their communication and ability to demonstrate connection. Many MHPs operate under pervasive, ableist myths or stereotypes about autism: all autistic people are suffering and wish to be cured; they lack empathy and social capabilities; they are unintelligent; they do not want friends or romantic relationships (Bennett et al., 2018). Although limited research exists on this topic, one could argue that the form of mental health care provision may impact the ways in which anti-autistic bias manifests in the alliance; practitioners in fields that rely heavily on relationality, such as counseling and psychotherapy, may have more opportunity to exhibit interpersonal anti-autistic bias, especially as the client processes their autistic identity in sessions. When MHPs steer the course of counseling toward the goal of processing autistic loss and decreasing autistic traits, they are defying the basic conditions of a strong therapeutic alliance, particularly consensus on treatment goals and tasks, nonjudgment, empathy, and unconditional positive regard (Hill, 2020).

Research also indicates that autistic adults are capable of perceiving anti-autistic bias, both in social systems and in interpersonal relationships, including therapeutic alliances. While some autistic people view their own autism as an integral, value-neutral element of their identity, they perceive society as bearing dangerous, exclusionary, and inescapable stigma toward them (Botha et al., 2020). Moreover, autistic adults speak of a lack of mental health care support that is accessible to them (Camm-Crosbie et al., 2019) and of MHPs that are biased and ignorant about autism (Ashby & Causton-Theoharis, 2009; Camm-Crosbie et al., 2019).

Although autistic people often have negative experiences with MHPs, mental health care has the potential to be just as positive an experience for them as for any other community of people (Camm-Crosbie et al., 2019). There are many studies that indicate the effectiveness of counseling for autistic people (Cashin et al., 2013; Monteiro, 2022; Parker & Molteni, 2017). These studies demonstrate how popular interventions can be generally applied to or adapted for autistic people, but often fail to control for the extent to which participants’ experiences of the therapeutic alliance and bias within it impact results. In addition, there is limited research available regarding how to adapt therapies for autistic people. When autistic people seek help with mental health challenges, including those associated with autism, like executive functioning and emotional regulation, they would benefit from working with practitioners who do not stigmatize their autism (Cai et al., 2018).

While previous research has examined the presence of interpersonal anti-autistic bias in the therapeutic alliance (Camm-Crosbie et al., 2019) and measured autistic people’s self-esteem (Cooper et al., 2020), scholars have yet to explore the relationship between the two constructs. It is of utmost importance to understand their interplay, as research has found that low self-esteem is a factor in the high suicide rates of the autistic population (Arwert & Sizoo, 2020; Cassidy et al., 2014) and suicide is the leading cause of premature death for autistic people (Hirvikoski et al., 2016). In order to understand autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they perceive it has on their self-esteem, this study investigated the questions: How, if at all, do autistic adults experience anti-autistic bias in their respective therapeutic alliances? and How do they describe the relationship between their experiences in the therapeutic alliances and their self-esteem?

Methodology

Phenomenological inquiry was selected to gain a better understanding of the shared experiences of autistic adults engaged in the therapeutic alliance (Creswell, 2009). This methodology aligned with the researchers aim to “capture the meaning and common features, or essences, or an experience or event” (Starks & Trinidad, 2007, p. 1374). Researchers used thematic analysis to identify common themes across participant interviews (Braun & Clarke, 2006, 2019). This study is undergirded by the neurodiversity model of autism, which views autism as a culture, community, value-neutral form of genetic diversity, and central part of an individual’s identity (Jaarsma & Welin, 2012; Ne’eman, 2010; Ortega, 2009).

Participants

Fourteen autistic adults participated in this study. Participants varied in age, though most of the sample (n = 10) were between the ages of 24 and 39. In addition, 5 of the 14 participants identified as LGBTQ+. Table 1 provides additional demographic information. The overall number of participants (n = 14) slightly exceeds the sample size of 1–10 participants that is recommended for phenomenological research (Starks & Trinidad, 2007). All participants met the following eligibility criteria: (1) aged 18 or over, (2) identified or diagnosed as autistic, (3) English-speaking, (4) had experience with MHPs, and (5) able to provide informed consent.

Table 1.

Participant demographics.

Participant	Age	Other identities (optional)
Rosa	18–23	I am non-binary (assigned female at birth), non-white, and bisexual. I also have a mild physical disability
Jody	24–29	Gender
Moira	30–39	Queer, female
Sheba	50–59	Female, late diagnosis
Hannah	40–49	Moderately gifted; high socioeconomic status, and other things that cause people to “disbelieve”
Jake	24–29	–
Isaiah	24–29	Live in rural area
Pax	24–29	I am genderfluid, pansexual, and have chronic pain
Kelly	30–39	OCD, depression, anxiety, severe phobias, late diagnosis
Jane	30–39	None
Athena	40–49	Non-binary, pansexual, lives in poverty, PTSD
Morgan	30–39	Depression, anxiety, possible bipolar, late diagnosis, postpartum
Alex	30–39	Physically disabled, trans
Anastasia	24–29	Being treated for depression

OCD: obsessive-compulsive disorder; PTSD: post-traumatic stress disorder.

Procedures

After receiving approval from their Institutional Review Board, researchers disseminated a participant recruitment email through professional channels for neurodiverse adults in the United States, as well as through known contacts. This email led volunteers to a participation interest survey on Qualtrics. The email clarified that this study especially sought individuals who held intersecting identities typically excluded from the white, male-dominated samples seen in other autism research, as we were interested in diversifying the perspectives commonly elevated by current literature. In an optional, open-ended question, participants were asked to share any identities they felt intersected with or complicated their autistic identity.

Participants were given the option to conduct the interview via video chat or answer an identical set of questions via Qualtrics to provide options for individuals with verbal or written communication differences and social anxiety. Interview questions were informed by qualitative and quantitative studies about autism stigma and autistic’s experiences with mental health care (Ashby & Causton-Theoharis, 2009 ; Botha et al., 2020; Camm-Crosbie et al., 2019; Como et al., 2019; Levinstein, 2018) and were open-ended (see Appendix 1). During the interview, participants were asked to describe their experiences with MPHs related to anti-autistic bias and to speak about how they conceive of the cause and effect between working with MHPs and their self-esteem.

Community involvement

The first author of this article is an autistic clinical mental health counselor who works with autistic children and adolescents. The second author is a neurotypical associate professor with a background in Disability Studies and K-12 education in the United States.

Data analysis

The researchers coded the data using Braun and Clarke’s (2006, 2019) six stages of thematic analysis. This included familiarizing themselves with the data through the process of conducting and transcribing the interviews, reading the entire data set while creating analytic memos for each interview, and creating an overarching analytic memo regarding thoughts on patterns, meanings, and themes across interviews. Additional steps included generating initial codes, by working systematically through the data sets, first with a round of line-by-line coding, and then a round of holistic coding. Coded data were sorted into themes, which went through a refinement process that included collapsing some themes into larger themes, creating sub-categories, and further corroborating the legitimacy of other themes. The researchers employed reflexivity throughout the analytic process, reflecting the notion that “themes are creative and interpretive stories about the data, produced at the intersection of the researcher’s theoretical assumptions, their analytic resources and skill, and the data themselves” (Braun and Clarke, 2019, p. 594). This process culminated in naming and defining of themes (See Table 2).

Table 2.

Emergent themes and sub-themes.

Theme	Sub-theme
Implicit Bias Manifested through Clinical Assumptions about Autism	Autistic People are Unintelligent and Incapable of Defining their Own Identities
	Autistic People are Male
	Autistic People Don’t Have Friends or Romantic Relationships
Explicit Bias: Perceptions of Intentional Harm	Perceptions of Intentional Harm through Bullying and Neglect
Explicit Bias: Perceptions of Intentional Harm	Relationship Between Explicit Bias and Participant Self-Esteem
Repair of Self-Esteem through Positive Alliances

Trustworthiness

The researchers used several reliability procedures to validate research findings. In line with researcher reflexivity, the researchers attempted to bracket their personal experiences with the therapeutic alliance, as well as their personal assumptions regarding potential outcomes through reflexive journaling. The second author, a neurotypical woman, reflected that her experiences as the recipient of mental health services were positive and affirming. The first author of this article, who identifies as autistic, has experience as both recipient and provider of mental health services. When receiving services, she experienced MHP bias related to her gender (e.g. MHPs who were reluctant to diagnose her as autistic because she is female) and functioning (i.e. MHPs expressing sentiments such as, “You’re so smart, there’s no way you could be autistic”). In response, the researchers talked through each piece of data they coded for gender and functioning bias, even if their codes aligned. They discussed how the first author’s prior experiences as an MHP recipient and provider could influence her interpretation of the findings, as well as the ways that the second author’s neurotypical framing could affect her engagement with the data. Rather than coding through a positivist frame, the coding approach was “collaborative and reflexive, designed to develop a richer more nuanced reading of the data” (Braun & Clarke, 2019, p. 594). The researcher discussed points of divergence, which added nuance to findings. Ultimately, the process of bracketing and subsequent reflection allowed researchers to identify their presuppositions regarding the research project (Chan et al., 2013).

Additional validity strategies included the creation of a codebook, which helped mitigate the possibility of differently interpreting the meanings of codes, the use of rich, thick description when communicating findings, and the use of two neurotypical external auditors (university professors), who provided feedback on the interpretations of the researchers (Lincoln & Guba, 1985). Researchers also engaged in member checking with study participants (Lincoln & Guba, 1985). Four of the 14 participants responded to the member checking request and reviewed their transcripts for accuracy and were given the opportunity to adjust inaccurate themes after reading the manuscript. These participants agreed with the presentation of their responses and the researchers’ analysis of the data.

Results

Data analysis yielded three themes: implicit bias manifested through clinical assumptions about autism, explicit bias expressed through perceptions of intentional harm, and repair of self-esteem through positive alliances. Themes and sub-themes are detailed in Table 2 and discussed below.

Implicit bias manifested through clinical assumptions about autism

Data indicate that participants’ first introduction to MHPs’ implicit bias often came when the client voiced the suspicion that they may be autistic. Practitioners continued to express ignorant and unintentionally hurtful assumptions throughout therapeutic encounters.

Autistic people are unintelligent and incapable of defining their own identities

Several participants’ practitioners expressed assumptions about autistic people’s ability to function and succeed. After receiving an autism diagnosis from a previous practitioner, Jake began working with a new MHP:

I went to a leadership seminar. And you know, my [new] therapist was thrilled about that . . . But then when I told him about my diagnosis, he said, “I work with a lot of people with Asperger’s and I’ll tell you, they’re not leaders.”

In response, Jake spoke of feeling disempowered by this practitioner’s limiting remarks about autism. Participants felt that their practitioner’s use of certain language belied derogatory beliefs about autistic people’s functioning and intelligence, and they took issue with their practitioner’s use of functioning language (e.g. labeling people “high functioning” versus “low functioning”). They expressed that these terms are an ableist way of assessing autistic worth and well-being. Participants also took issue with MHPs’ use of language that did not align with their identity preference (e.g. identity-first or person-first). Morgan explained how her practitioner’s constant use of person-first language affected her:

For three years now she still refers to me as a person with autism instead of an autistic person. Even though I’ve told her numerous times. If I don’t call her out every time she doesn’t correct herself either. She put that burden on me. Which causes more trauma to not have my identity respected.

Autistic people are male

Participants also reported that their practitioners expressed the assumption that females or people who they interpreted as being female cannot or likely do not have autism. When Jody sought diagnosis in the 1990s, practitioners denied the possibility of autism for years by citing their belief that females are not autistic. A comparable situation occurred for Alex, who is non-binary, as practitioners assumed that they were a “girl.” When asked how they may have experienced anti-autistic bias in the therapeutic alliance, they wrote: “not being diagnosed as a result of my gender.” Athena stated that her practitioners dismissed her as an “an anxious and hysterical female” when she reported experiencing severe sensory overloads rather than exploring them as indicators of a possible autism diagnosis. This disbelief delayed their access to diagnosis and treatment, which resulted in years of confusion and unsuccessful interventions.

Autistic people do not have friends or romantic relationships

Participants perceived MHPs as believing that autistic people are incapable of romantic relationships and friendships, due in part to their perceived inability to grasp tenets of socialization. When Rosa sought an autism diagnosis, her practitioners dismissed the possibility by citing her friendships:

They would be like, ‘What made you think you’re autistic? I mean, you’re like, you have friends or whatever’ . . . They said that, ‘Oh, you couldn’t be autistic’ before actually listening to . . . any sort of like, struggles or like traits, like they were just like, operating on their assumption.

Jody received social skills and speech training that was “very belittling and felt like a total waste,” as she felt she was required to attend several hours of this training every week because of family and practitioners’ unfounded, negative assumptions about her inability to socialize. Similarly, Moira’s practitioner asserted that she was “holding back from people romantically.” Rather than ask Moira to reflect on her dating life, the MHP used closed, leading questions that dismissed the possibility of romantic relationships.

Isaiah felt “smothered” by the number of services he received for socialization support. He pointed out the irony of being enrolled in so many hours of social skills training per week that he did not have time to put the teachings to use in real friendships: “It made me feel like I really can’t function with- with kids in school because like, I never really got to go out much and hang out with friends.” He later joked, “How can I get into relationships like, ‘Oh, babe, sorry, I can’t go on a date right now. My [therapist] is here.’” Although participants worked with practitioners for social skills support, they felt that the practitioner’s condescending behavior and the intensity of the services provided often resulted in insecurity about their ability to implement these skills.

Unfortunately, practitioners’ assumptions about poor autistic communication skills appeared to play out in the therapeutic alliance. Participants described not feeling listened to by their practitioner, often because their therapists’ basic attending skills and means of communicating were informed by neurotypical patterns not suited to autistic communication styles. Sheba described how disempowering it felt to have one’s challenges with communication replicated in the therapeutic alliance, with the same isolating effects as usual: “You’re sitting there exemplifying, you know, the struggle to have interconnect, interpersonal communication, with someone who’s different than you. And they’re just like, they’re missing it too, you know?” Some participants spoke about the ways in which neurotypical practitioner’s emphasis on eye contact inhibited therapeutic effectiveness. Participants also reflected a need for the practitioner to provide them with the tools to identify and communicate their emotions within the counseling relationship, as a means of erecting a common language of sorts.

Relationship between implicit bias and participant self-esteem

In response to questions about anti-autistic bias and the therapeutic alliance, participants used the word “assume,” four used “ignore,” and three used “dismiss.” Participants indicated that they viewed MHPs’ reliance on assumptions and dismissive tone as anti-autistic bias, despite often feeling that they were not intended to be harmful or overtly stigmatizing. Participants considered this behavior majorly damaging to the therapeutic alliance and had ramifications for their self-esteem. Rosa said, “I don’t think that anybody’s, like, actively hostile. I feel like I’ve had a lot of experience sort of being ignored. Not necessarily on purpose.” Pax described how these assumptions affected their self-esteem and therapeutic alliance:

That just felt so much like an assault on who I am, on my personhood, you know? . . . Like, it’s a blow to your self-worth . . . because they have just minimized you . . . and they want to establish a therapeutic relationship with you.

Hannah often avoided expressing her autism diagnosis within the therapeutic relationship in response to experiences with practitioners who questioned her competence. She described instances where practitioners assumed she could not obtain goals due to the sensory stimulation and executive functioning requirements:

Sometimes I still get belittled for the things I want to pursue, just wholly because I’m autistic. They’ll be like, “Are you sure you can tolerate all that noise? Are you sure you can tolerate all that?” It’s like, “I’m gonna have to. It’s what I got to do.”

She clarified that while these practitioners appeared to operate from a desire to be sensitive to her needs, their infantilization harmed her feelings of self-worth.

Explicit bias expressed through perceptions of intentional harm

Participants also detailed therapeutic relationships where they perceived their practitioner to be knowingly malicious. The therapeutic alliances between clients and these practitioners were the most strained, and participants reported diminished self-esteem because of these relationships.

Perceptions of intentional harm through bullying and neglect

Participants posited that some practitioners expressed overt anti-autistic bias in the form of disrespect, degrading comments, and stigmatization of autistic ways of being. Jody detailed degrading and hurtful remarks that practitioners who specialize in autism have said to her, including being told:

“Oh, you shouldn’t be allowed to breed because you’re, you’re faulty. You shouldn’t be experimenting with this because you won’t be able to support yourself. You don’t have a job.” Just put you down all the time, saying how you just weren’t worthy of a decent job. You weren’t worthy of a normal relationship. You weren’t worthy of basically the things that other neurotypicals had.

Isaiah spoke about his 6-month relationship with a behavior specialist who he described as bullying him. This practitioner accused the client of faking his autism, and instead being “just lazy and just inappropriate.” These sessions occurred two to three times per week when Isaiah was in seventh grade, at a time when he was already experiencing severe bullying from peers. Participants perceived these instances as active attacks on their personhood and autistic identity that badly impacted their self-esteem.

Some participants perceived their practitioner as simply not caring about their well-being and feeling disinterested in helping them. Anastasia expressed suicidal ideation and difficulties with executive functioning to several practitioners, all of whom either denied the legitimacy of these claims or ignored the statements altogether. Isaiah stated that some practitioners he has encountered since his diagnosis at age 4 have treated him like he’s just “another job,” with their only intention being to “watch him so he doesn’t break or burn anything or hurt anyone.”

Relationship between explicit bias and participant self-esteem

Participants described deleterious effects to their self-esteem because of working with MHPs who they feel harmed them through intentional carelessness or active malice. After having a practitioner deny and ignore her suicidal ideation and executive dysfunction, Anastasia said

I was crying a lot, [thinking] what’s wrong with me, maybe my friends weren’t right that I have depression, if psychiatrist doesn’t see this, and I am just like this. I hated myself. Even my steps and breathing were wrong.

Participants made it clear that their experiences with explicit bias in mental health care were a source of trauma that engendered additional mental health concerns. In response to a question about how her relationship with her MHP affected her self-esteem, Athena stated

In the past it has caused me more trauma than my molestation, beating, and torment did as a child, honestly. Knowing these people have a nice living in a job that I know they abused me in for being autistic.

Participants carried the effects of this traumatization long after the therapeutic relationship had ended.

Another result of perceived intentional harm and overt bias from practitioners was participants’ development of internalized bias. Alex internalized the voices of practitioners who shamed them for stimming:

My experience with mental health practitioners has had a negative impact on my self-esteem. It makes me feel bad for being who I am. I can’t stim the way that I need to. Sometimes even when I’m in my own home I have an inner voice that tells me my stimming is weird, annoying, or ugly.

Jody and Isaiah, who described the most overt experiences of anti-autistic bias in the therapeutic alliance, were also the ones who most directly expressed what one could describe as internalized bias. Isaiah initially rebelled against his practitioners in an attempt to assert his competence and autonomy, but now struggles to balance his self-esteem with his need for help from practitioners: “I try to humble myself by- by acting less of a person, more weak minded. So I don’t raise my ego.”

Jody appeared to have internalized the neurotypical standards that her practitioners enforced upon her, which caused her to put immense pressure on herself and to feel overwhelmed by the many perceived expectations of others. She stated that she feels “. . . terrified to show any little ounce of being autistic in front of anybody that doesn’t know that.” She describes holding herself to standards and takes pride in “making an effort” to appear neurotypical, while also acknowledging how unfairly difficult it is. Ultimately, these findings revealed that encounters with practitioners who were explicitly biased had a potent impact on the participants’ self-esteem.

Repair of self-esteem through positive alliances

Fortunately, participants spoke about the power of one strong therapeutic alliance to heal injuries to self-esteem caused by years of previous harmful alliances. Jake felt that his previous alliance kept his self-esteem from “growing at a time when that would have been really important,” but his current therapeutic alliance improved his self-esteem:

Well, with the therapist I’m seeing now, my self-esteem has definitely grown. I feel a lot more, a lot more accepted. It’s . . . good to be working with somebody who . . . has kind of high expectations of me or doesn’t lower them because of my diagnosis.

He described a need for practitioners to fight against discouraging societal messages against autism by telling clients: “You deserve to have friends and you deserve to have good relationships, and you deserve to have self-esteem.” Anastasia’s self-esteem was badly impacted by overt bias from previous practitioners, but her current relationship has helped: “My actual psychiatrist . . . I feel much better thanks to her, I accepted myself as I am and have a lot more self-respect and confidence.”

Athena had many negative experiences, including some with her current provider, but after a rupture and repair in their alliance, her self-esteem grew:

My current therapist has been the only one to truly help a bit with my self-esteem . . . While she did damage for a long time . . . she also redeemed herself . . . which has made my self-esteem get higher than it ever has been able to.

Discussion

Through phenomenological investigation of the questions, How, if at all, do autistic adults experience anti-autistic bias in their respective therapeutic alliances? and How do they describe the relationship between their experiences in the therapeutic alliances and their self-esteem?, findings of this study indicated that participants perceived explicit and implicit bias within their therapeutic alliances and that these perceptions negatively impacted their self-esteem. Key findings included the negative impact and inherent bias in MHPs’ assumptions about autism, autistic adults’ experiences with overt bias and intentional harm from practitioners, and the power of alliance repair. Study findings strongly indicated a connection between the participants’ perceptions of bias in their therapeutic alliance and their self-esteem. To date, no existing research has examined this phenomenon within the autistic population.

Findings of this study illuminate autistic people’s perception of bias from their practitioners to an extent that no previous studies have captured and broaden previous conversations regarding anti-autistic bias in the therapeutic alliance, as they extend beyond the binaries of “bias/no bias” and “harmful/helpful.” Moreover, previous studies that examine anti-autistic bias in the therapeutic alliance focus on the practitioner’s perspective (Hodge, 2013; Kelly & Barnes-Holmes, 2013). Participants in this study reported being called names such as “faulty” and “lazy” and having their challenges, including suicidal ideation, minimized, and ignored. They expressed, in detail, the ways that MHPs operated on often-negative assumptions about autism in place of legitimate information. This sentiment has only been touched upon from a client perspective in one other study: Camm-Crosbie and colleagues (2019) discovered that a sample of autistic adults perceive their MHPs as biased and ignorant about autism.

While a practitioner may not express overt bias, our study found that their behaviors, language, and communication styles can be perceived as biased by autistic people and can have negative effects on the client. One such example was MHPs’ use of language that did not align with the identity preferences of their clients. It is important to note that language used to describe one’s identity is a personal choice; while some may prefer identity-first language, others may choose to identify using person-first language. This is not just a semantic difference: “this distinction has practical implications, as the words that we use to describe individuals with an autism diagnosis influence societal perceptions, public policy, clinical practice and research directions” (Vivanti, 2020, p. 691). When MHPs ignore participants’ language preferences, they control the narrative about what it means to be autistic and who gets to decide. On an interpersonal level, doing so can disempower their autistic clients. On a broader scale, this reinforces neurotypical privilege. This finding speaks to the research of Nguyen and colleagues (2020), who found that autistic adults report lower global self-esteem than neurotypical participants (even after controlling for autism characteristics). Nguyen et al. (2020) also found that autistic adults perceive less power in their relationships, which is reflected in participant’s reports of powerlessness in their therapeutic alliance. Expecting autistic people to prove that a practice is harmful in order to advocate for its cessation furthers the imbalance of power between practitioner and client. In other words, focusing on practitioner intent over client impact privileges the intentionality of the practitioner over the actual (often-negative) experiences that autistic people face as an effect of that behavior.

Alternatively, some of the participants in this study indicated pride and positivity toward their autistic identity; they made statements denoting a level of self-esteem as a member of this community and asserted that their autism was a gift, not a flaw to be “fixed.” This finding corresponds to Cooper and colleagues’ (2020) finding that there is a positive relationship between the number of positive attributes that a sample of autistic adults associated with autism and their collective self-esteem in relation to the larger autism community. These findings are also aligned with several other studies regarding autistic peoples’ perceptions of autism as an integral part of their identity that deserves, but rarely receives, acceptance (Ashby & Causton-Theoharis, 2009; Botha et al., 2020; Webster & Garvis, 2017).

Results of this study also speak to the larger discussion of the medical versus social model, as participants largely embraced the social model of disability and pushed back against many of the medical model perspectives that the mental health care industry is currently oriented around. They asserted that practitioners’ fixation with eliminating autistic symptoms was stigmatizing, traumatizing, and an unhelpful distraction from the genuine issues that they came to counseling for, such as anxiety, depression, and trauma disorders. Our participants also perceived practitioners as expecting their clients to adhere to neurotypical standards of communication, without bothering to learn neurodiverse communication styles. These findings support Milton’s (2012) concept of the double empathy problem, as the challenge and responsibility of comprehending social nuances is bi-directional among autistic and non-autistic people.

Implications

This study generated significant implications for clinical practice through participants’ direct identification of beneficial and ineffective techniques as well as general feedback on the therapeutic process.

Seek autistic perspectives

The results of this study indicate that it is necessary that the mental health field values autistic peoples’ perspectives on decisions regarding them. Despite research indicating that autistic people are qualified to be experts on autism and involved in autism research (Gillespie-Lynch et al., 2017), the mental health field has excluded their input from large- and small-scale clinical decisions regarding their community (Pellicano et al., 2014). This could be achieved by practitioners ceasing oppressive practices and helping autistic clients to accept and capitalize upon their differences. Practitioners should never enter the therapeutic relationship with limiting assumptions about the autistic client or assume that they are accessing services to eliminate their neurodiversity. The client should always be considered the expert on themselves, and this is no different for autistic clients, who are especially vulnerable to uneven power dynamics in the therapeutic alliance (Gillespie-Lynch et al., 2017). Although this study generated suggestions for improved clinical practice, future research should focus more on autistic adults’ responses to various mental health care techniques. Future quantitative research could provide necessary, large-scale insight into the phenomenon explored in this study. There is a need for the development of a quantitative instrument that measures the relationship between autistic adults’ perceptions of the therapeutic alliance and their self-esteem, which could produce generalizable findings.

Recognize that communication is bi-directional

In addition, participants generated several suggestions for practitioners to work around the double empathy problem (Milton, 2012). The first was for practitioners to simply acknowledge and accept that there may be differences in communication and to not set neurotypical expectations for interactions with autistic clients. This includes not demanding eye contact or assuming a client’s emotional state exclusively from their body language. They also recommended that MPHs verify that their autistic clients understand what they, the practitioner, are saying and the intention with which they are saying it.

Unpack anti-autistic bias

It is imperative that MHPs consider their implicit and explicit biases regarding what it means to be autistic and develop an understanding of how the mental health field itself promotes those biases. Participants asserted that they viewed many of their practitioners as unaware of the effects of their behavior or even of the presence of anti-autistic bias. Many of the problematic practices detailed by participants, such as the treatment of autism as an illness and the use of person-first and functioning language, are commonplace and industry standards across the mental health field. It is exceptionally difficult for any practitioner to establish a strong alliance and utilize effective interventions, when many of the techniques and ways of engaging with clients that they have been trained in are either not intended for autistic people or are born out of negative ways of viewing autism. Practitioners at any stage of their career can seek out conference presentations, workshops, or trainings from autistic practitioners about manifestations of bias in the alliance. Research that examines how to train practitioners in equitable and effective interventions with autistic clients would provide a deeper understanding of MHPs’ awareness of their biases as well as the effectiveness of these forms of professional development.

Conclusion

While this phenomenological study presented a rich overview of participant experiences within the therapeutic alliance and the effects of said experiences on their self-esteem, it is necessary to consider study limitations. One consideration is the use of the word “bias.” While the researchers offer definitions of implicit and explicit bias, they recognize that the term bias may be interpreted and operationalized in myriad ways. Another limitation of this research was data triangulation. Introducing additional data points, such as integrating participant journaling or post-session audio reflection, could provide nuance to current findings. In addition, this sample skewed slightly toward middle-aged adults in the United States, and the participants primarily identified as white or Hispanic. The field would benefit from qualitative work investigating autistic adults’ experiences with anti-autistic bias in the therapeutic alliance outside of the United States.

While engaged in the therapeutic alliance, participants reported feeling stigmatized, dismissed, infantilized, and reviled for being autistic. Participants in this study were keenly aware of the stigma against them and endured negative impacts to their well-being as a result. This builds greater connective tissue between current findings about perceptions of bias in the alliance and damage to one’s self-esteem, as this study highlighted the relationship between perceptions of bias, the trauma that that bias caused, and the long-term effects to one’s self-esteem.

Thus, the most significant contribution of this study is its ability to tether the concepts of self-esteem and therapeutic alliance, especially for a population whose therapeutic experiences receive little scientific inquiry. This research has illuminated a major problem in the way that MHPs engage with autistic clients and the impact those alliances have on the client’s self-esteem. MHPs must work to empower clients from diverse backgrounds and neurologies. To do so, they must make conscious efforts to examine and ameliorate their own anti-autistic bias and to advocate alongside a population that the mental health field has continually oppressed.

Footnotes

Appendix 1 Acknowledgements

The authors thank these 14 autistic individuals for sharing their perspectives and the article reviewers for their valuable feedback.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Christa S Bialka

Notes

References

Aafjes-van Doorn

Kealy

Ehrenthal

J. C.

Ogrodniczuk

J. S.

Joyce

A. S.

Weber

(2019). Improving self-esteem through integrative group therapy for personality dysfunction: Investigating the role of the therapeutic alliance and quality of object relations. Journal of Clinical Psychology, 75(12), 2079–2094. https://doi.org/10.1002/jclp.22832

Albee

G. W.

(1996). The psychological origins of the white male patriarchy. Journal of Primary Prevention, 17, 75–97. https://doi.org/10.1007/BF02262739

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596

Arwert

T. G.

Sizoo

B. B.

(2020). Self-reported suicidality in male and female adults with autism spectrum disorders: Rumination and self-esteem. Journal of Autism and Developmental Disorders, 50(10), 3598–3605. https://doi.org/10.1007/s10803-020-04372-z

Ashby

Causton-Theoharis

(2009). Disqualified in the human race: A close reading of the autobiographies of individuals identified as autistic. International Journal of Inclusive Education, 13, 501–516.

Ballard

(1995). The politics of prejudice in psychology: A syllabus and bibliography. Feminist Teacher, 9(1), 16–21. https://www-jstor-org.web.bisu.edu.cn/stable/40545693

Beecher

Rabe

Wilder

(2004). Practical guidelines for counseling students with disabilities. Journal of College Counseling, 7(1), 83–89. https://doi.org/10.1002/j.2161-1882.2004.tb00262.x

Bennett

Webster

A. A.

Goodall

Rowland

(2018). Life on the autism spectrum: Translating myths and misconceptions into positive futures. Springer.

Blair

I. V.

J. E.

Lenton

A. P.

(2001). Imagining stereotypes away: The moderation of implicit stereotypes through mental imagery. Journal of Personality and Social Psychology, 81(5), 828–841. https://doi.org/10.1037/0022-3514.81.5.828

10.

Botha

Dibb

Frost

D. M.

(2020). “Autism is me”: An investigation of how autistic individuals make sense of autism and stigma. Disability & Society, 37, 427–453. https://doi.org/10.1080/09687599.2020.1822782

11.

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. http://eprints.uwe.ac.uk/11735

12.

Braun

Clarke

(2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806

13.

Brisenden

(1986). Independent living and the medical model of disability. Disability, Handicap & Society, 1(2), 173–178. https://doi.org/10.1080/0267464866678017

14.

Cai

R. Y.

Richdale

A. L.

Uljarević

Dissanayake

Samson

A. C.

(2018). Emotion regulation in autism spectrum disorder: Where we are and where we need to go. Autism Research, 11(7), 962–978. https://doi.org/10.1002/aur.1968

15.

Camm-Crosbie

Bradley

Shaw

Baron-Cohen

Cassidy

(2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism, 23(6), 1431–1441. https://doi.org/10.1177/1362361318816053

16.

Cashin

Browne

Bradbury

Mulder

(2013). The effectiveness of narrative therapy with young people with autism. Journal of Child and Adolescent Psychiatric Nursing, 26(1), 32–41. https://doi.org/10.1111/jcap.12020

17.

Cassidy

Bradley

Robinson

Allison

McHugh

Baron-Cohen

(2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: A clinical cohort study. The Lancet Psychiatry, 1(2), 142–147. https://doi.org/10.1016/s2215-0366(14)70248-2

18.

Chan

Z. C.

Fung

Y. L.

Chien

W. T.

(2013). Bracketing in phenomenology: Only undertaken in the data collection and analysis process. The Qualitative Report, 18(30), 1–9.

19.

Como

D. H.

Floríndez

L. I.

Tran

C. F.

Cermak

S. A.

Stein Duker

L. I.

(2019). Examining unconscious bias embedded in provider language regarding children with autism. Nursing & Health Sciences, 22(2), 197–204. https://doi.org/10.1111/nhs.12617

20.

Cooper

Russell

A. J.

Smith

L. G.

(2020). “I’m proud to be a little bit different”: The effects of autistic individuals’ perceptions of autism and autism social identity on their collective self-esteem. Journal of Autism and Developmental Disorders, 51(2), 704–714. https://doi.org/10.1007/s10803-020-04575-4

21.

Creswell

J. W.

(2009). Research design: Qualitative, quantitative, and mixed methods approaches (3rd ed.). SAGE Publications Inc.

22.

Flückiger

Del Re

A. C.

Wampold

B. E.

Horvath

A. O.

(2018). The alliance in adult psychotherapy: A meta-analytic synthesis. Psychotherapy, 55(4), 316–340. https://dx-doi-org.web.bisu.edu.cn/10.1037/pst0000172

23.

Gillespie-Lynch

Kapp

S. K.

Brooks

P. J.

Pickens

Schwartzman

(2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8, Article 438. https://doi.org/10.3389/fpsyg.2017.00438

24.

Hill

C. E.

(2020). Helping skills: Facilitating exploration, insight, and action (5th ed.). American Psychological Association.

25.

Hirvikoski

Mittendorfer-Rutz

Boman

Larsson

Lichtenstein

Bölte

(2016). Premature mortality in autism spectrum disorder. British Journal of Psychiatry, 208(3), 232–238. https://doi.org/10.1192/bjp.bp.114.160192

26.

Hodge

(2013). Counselling, autism and the problem of empathy. British Journal of Guidance & Counselling, 41(2), 105–116. https://doi.org/10.1080/03069885.2012.705817

27.

Jaarsma

Welin

(2012). Autism as a natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1), 20–30.

28.

Kelly

Barnes-Holmes

(2013). Implicit attitudes towards children with autism versus normally developing children as predictors of professional burnout and psychopathology. Research in Developmental Disabilities, 34(1), 17–28. https://doi.org/10.1016/j.ridd.2012.07.018

29.

Levinstein

K. P.

(2018). Distorting psychology and science at the expense of joy: Human rights violations against human beings with autism via applied behavioral analysis. Catalyst: A Social Justice Forum, 8(1), 76–94. https://trace.tennessee.edu/catalyst/vol8/iss1/5

30.

Lincoln

Y. S.

Guba

E. G.

(1985). Naturalistic Inquiry. SAGE.

31.

Lipinski

Boegl

Blanke

E. S.

Suenkel

Dziobek

(2021). A blind spot in mental healthcare? Psychotherapists lack education and expertise for the support of adults on the autism spectrum. Autism: The International Journal of Research and Practice, https://doi.org/10.1177/13623613211057973

32.

Maharaj

A. S.

Bhatt

N. V.

Gentile

J. P.

(2021). Bringing it in the room: Addressing the impact of racism on the therapeutic alliance. Innovations in Clinical Neuroscience, 18(7–9), 39–43.

33.

Milton

D. E. M.

(2012). On the ontological status of autism: The “double empathy problem.” Disability & Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008

34.

Monteiro

M. J.

(2022). Individualizing the autism assessment process: A framework for school psychologists. Psychology in the Schools, 59(7), 1377–1389. https://doi.org/10.1002/pits.22624

35.

Ne’eman

(2010). The future (and the past) of autism advocacy, or why the ASA’s magazine, the advocate, wouldn’t publish this piece. Disability Studies Quarterly, 30, Article 1244. https://dsq-sds.org/article/view/1059/1244

36.

Nguyen

Ownsworth

Nicol

Zimmerman

(2020). How I see and feel about myself: Domain-specific self-concept and self-esteem in autistic adults. Frontiers in Psychology, 11, Article 913. https://doi.org/10.3389/fpsyg.2020.00913

37.

Ortega

(2009). The cerebral subject and the challenge of neurodiversity. BioSocieties, 4, 425–445. https://doi.org/10.1017/S1745855209990287

38.

Parker

M. L.

Molteni

(2017). Structural family therapy and autism spectrum disorder: Bridging the disciplinary divide. The American Journal of Family Therapy, 45(3), 135–148. https://doi.org/10.1080/01926187.2017.1303653

39.

Pellicano

Dinsmore

Charman

(2014). Views on researcher-community engagement in autism research in the united kingdom: A mixed-methods study. PLOS ONE, 9(10), Article e109946. https://doi.org/10.1371/journal.pone.0109946

40.

Slesaransky-Poe

Garcia

A. M.

Lawrence-Brown

Sapon-Shevin

(2014). The social construction of difference. In Soloman

(Ed.), Condition critical (pp. 66–85). The Teachers College of Columbia University.

41.

Spates

(2012). “The missing link”: The exclusion of black women in psychological research and the implications for black women’s mental health. SAGE Open, 2, 1–8. https://doi.org/10.1177/2158244012455179

42.

Starks

Trinidad

S. B.

(2007). Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory. Qualitative Health Research, 17(10), 1372–1380. https://doi.org/10.1177/1049732307307031

43.

Swaine

(2011). Medical model. In Kreutzer

J. S.

DeLuca

Caplan

(Eds.), Encyclopedia of clinical neuropsychology (pp. 1542–1543). Springer. https://doi.org/10.1007/978-0-387-79948-3_2131

44.

Taylor

(2018). From bias to behavior: Predicting prejudice towards autistic individuals. W & M Scholarworks. https://scholarworks.wm.edu/honorstheses/1203

45.

Vivanti

(2020). Ask the editor: What is the most appropriate way to talk about individuals with a diagnosis of autism? Journal of Autism and Developmental Disorders, 50(2), 691–693. https://doi.org/10.1007/s10803-019-04280-x

46.

Webster

A. A.

Garvis

(2017). The importance of critical life moments: An explorative study of successful women with autism spectrum disorder. Autism, 21(6), 670–677. https://doi.org/10.1177/1362361316677719