Considering Diagnoses Part 4: Diagnosis and Identity

six hands of different shapes, sizes, colors joined together at the wrist

Introduction to the ABAI Practice Community Blog and Practice Board member co-author bios.

Please note that this blog is co-written by members of the ABAI Practice Board. 

In addition to the Practice Board member co-authors, today’s blog is co-authored by Sethe Zachman. We extend our appreciation for the individuals who shared their experiences and to Ximena Becerra for her contributions.

ABAI Practice Board website.

In the first three parts of the series on diagnoses, the lens through which we presented our comments was largely one of a clinical practitioner. We pointed out the futility and faulty logic of diagnoses, described three approaches underway to build a comprehensive and cohesive system that spans the sciences (e.g., behavioral, molecular, and neuroscience) and their implications for behavior-analytic practice, disparities in access to healthcare where diagnoses are obtained, and the positive and negative implications of diagnoses (i.e., labels).

We encouraged de-emphasizing labels in favor of an individualized, function-based approach to providing support and treatment in line with a person’s preferences and values. At the same time, we are aware of the sociocultural importance of diagnosis to many individuals, not only for obtaining needed support and treatment, but also for identity development and connection to a community. Over the last month, we have heard several of our Autistic1 students, friends, and colleagues say, “Receiving my autism diagnosis when I was (insert teen or young adult) literally saved my life.” Therefore, in this blog, we decided to address the topic of autism and neurodiversity and identity.  We welcome Sethe Zachman as a co-author to share their personal experience as an Autistic trans person and, thereby, add sociological and psychological perspectives on identity. 

From a behavioral perspective, “identity” is how people come to define and talk about themselves in relation to characteristics or features differentiated and assumed to be normative by a larger sociocultural verbal community and correlated with access to social reinforcers (e.g., resources) and also punishers (e.g., exclusion from contractual activities such as marriage, or health services). Identity as a construct facilitates the organization and coordination of behavior, the questioning of assumptions, and the societal shifts toward inclusionary and equitable practices and resource allocation. From a behavioral-analytic perspective, identity as a form of self-knowledge is what the verbal community has taught us about ourselves.  

Identity from a sociological perspective exists as a characteristic identified and attributed to an individual in relation to others, whereas from a psychological perspective, identity is a range of affiliations and social roles. Humans socially construct identity categories (e.g., race, neurodiversity) that presuppose inherent phenomenon for the purposes of social control, organization, and oppression (Menjívar, 2023). 

The diagnosis of autism, the history of which is long and rather complicated (Asperger, 1944; Barahona-Correa & Filipe, 2016; Czech, 2018; Kanner, 1943; Tatzer et al., 2023) with significant changes in the Diagnostic and Statistical Manuals III, IV, and V and beyond the purview of this blog, is categorized as a neurodevelopmental disorder, provides a name for being a certain way that is more often than not viewed as less able, and ‘places’ Autistics in a particular (low) place in the social hierarchy and power structures. Identity categorizations have institutionally functioned to stratify, oppress, and define marginalized communities for centuries (Menjívar, 2023). 

Yet without the diagnosis, affected individuals are left confused, feeling alone, and unable to connect with others who share their experience. Labels have framing value for how we experience the world. Receiving an ‘accurate’ diagnosis (accurate for the time, given that diagnostic definitions shift over time) that allows for connection and extends grace and self-acceptance is deeply important, and it is complicated by the fact that only medical authorities “give” the diagnoses. My (Sethe’s) autism diagnosis has freed me from my self-rejection. It explains and more importantly affirms my uniquely individual forms of functioning and relating in an allistic (non-autistic) world that has always been at odds with my experiences that have been central to my core conceptualization of myself. We live in a society where those in our community most “defined” by their autism–non-vocal/minimally speaking Autistics with severe behavior problems who are described “low-functioning”—are ‘othered’ to the extreme and incorrectly and astoundingly classified as innately defective, including physiological characteristics, in the public press (Rodier, 2000). As a result, being autistic is accompanied by severe societal stigma, misunderstanding, and even resentment from those both inside and outside of our community (particularly parents and allistics who’ve dedicated their lives to autism research and “treatment”).

Thus, although receiving a diagnosis from medical authorities allows us to come home to our community, socio-political connotations follow. How do we embrace and celebrate who we are, if allistics consistently dehumanize, objectify, and stigmatize us?

I (Sethe) was late-diagnosed after decades of alternative diagnoses at the age of 24. Since I was assigned female at birth, socialized and raised to be a woman, this heavily impacted the systemic invisibility of my symptoms due to the pressure to “behave” embedded within the gendered socialization received (Diemer et al., 2022). In my childhood and teenage years, I received diagnoses of generalized anxiety disorder, depression, obsessive compulsive disorder, and eventually bipolar II. I intuitively knew these diagnoses, while descriptive, insufficiently explained my experience with the world. The socio-historical trajectory of autism within healthcare, and thus extended into schools and all realms of our lives, undeniably influences what it means to be autistic; it is time for those of us who know it best to define what it means.

Several Autistic people we spoke with in preparation for this blog described their perspectives on receiving a diagnosis. Validation of ‘my way of being’ and a sense of belonging were common themes, “Being diagnosed was like coming home,” “When I finally got diagnosed, I felt like I was able to come into my true self,” “I spent years wondering what was wrong with me; I knew I was different but no one would outwardly acknowledge it. I thought I was weird, annoying, and the problem, but then with the diagnosis I found out there’s a name for my experience and I was able to advocate for myself. If I had been diagnosed sooner, it would have saved me so much pain, grief, and feeling like an ‘alien’. By being able to understand what was going on I could finally experience joy.” “It was like flipping a light switch in terms of understanding why I am the way I am, what was going on around me.” “My internal dialog became nicer to myself after I was diagnosed; it gave me a better understanding of why I process tasks and social situations in certain ways.” “When I was diagnosed with other ‘disorders’ but not autism, I was confused and misaligned with the greater community.” 

Several people described having multiple diagnoses, including obsessive compulsive disorder, depression, communication disorder (first for not talking and then for talking too fast), dyspraxia, and auditory processing disorder. All explained that the eventual autism diagnosis allowed them to see the sum of the parts rather than a list of ‘disabilities’ or problems. When asked about the relation between autism and other diagnoses, they responded uniformly that the other diagnoses feel like ‘parts’ of them, some of which were acquired and some of which can be treated, whereas autism reflects a persistent lived experience that they cannot walk away from.

One person said, “Autism is something I AM like having brown hair and liking Dr. Pepper. It is programmed into my existence and colors every moment of my lived experience.” Another said, “Autism is part and parcel of who I am, it’s what makes me who I am; it makes me funny, it makes me good at some things that others aren’t good at. The way it impacts me is pretty context-dependent. In some contexts it’s cool, in others it makes some things challenging for me.” Despite these perspectives, the parents of a number of individuals preferred the other diagnoses which seemed to them to be more acceptable, treatable, and less stigmatizing than the diagnosis of autism. Striking is the thread of internalized ableism and ableism that was woven through many of the experiences people shared. In fact, a number said that their parents’ ableism delayed their diagnosis. 

A consistent message was that autism is a specific and distinct category of identity and functioning that provides a particular perspective on the world, distinct from any other diagnosis, and with it comes a community. More than one person conveyed that having other Autistic or individuals who identify as neurodiverse in the community provides a relief to not be scared to “go non-verbal” or to voice their needs. Being in a community with other Autistic and neurodiverse people allows them to know that the way they move and interact will be fully accepted and not judged, helps them feel empowered and experience positive interactions that don’t involve pity. One said that being able to easily connect with other Autistic people is like connecting with people from the same home town or speaking the same language. Another said, “ My opinion and what I have learned is that autism is its own identity that every person uniquely experiences.”

A number of considerations emerged from our conversation with Autistics. First, the issue of communication came up repeatedly. We heard about how communication with people outside of the autistic community can be a big barrier and the importance of allistics promoting autonomy, checking in to ask what they want or need, offering various forms of support, and accepting rejection repeatedly until they land on the thing that the Autistic person needs or that helps. Second, people expressed concern that some people who have lower support needs and/or high communication skills sometimes think that they can speak for everyone, including people with high support needs. They pointed out that although they could talk about the importance of identity, their autism diagnosis, and community, they were acutely aware of others who are unable to share their perspective on these issues and do not pretend to know what individuals with high support needs think about these same issues. Third, despite the preponderance of benefits they shared about having a diagnosis that reflects their identity, they pointed out the social control and oppression that accompanies their identity including access and equity disparities, “gatekeeping” of who receives a diagnosis, appropriate support, employment, housing, and the ability to adopt children. 

A gift from the inhumane-to-more-humane trajectory of autistic medicalization is the evolved fact that autism IS a spectrum. There is no treating autism, there is compassionately supporting Autistics navigate an unjustly allistic-centered and defined society.  “Everyone makes it seem like autism is a pitiful and challenging experience to have when it’s only that way because neurotypical people make it that way.” For me (Sethe), being autistic means standing beside my community members, no matter where we land on the spectrum and what mode we use to communicate. It means rejoicing in, rather than being threatened and societally perplexed by, the natural diversity of abilities, needs, and experiences of autism. As a community, let’s de-pathologize autism and continue to work toward dismantling ableism. 

1We have capitalized the word autism when it is used to refer to an individual with the diagnosis, consistent with the stated desire of many Autistics to recognize it as a distinct cultural group. In other places, we have not capitalized it to adhere to APA 7 conventions for not capitalizing diagnoses or other adjectives. 

References and Resources:

Barahona-Corrêa, J. B., & Filipe, C. N. (2016). A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis. Frontiers in psychology, 6, 2024.

Baron-Cohen S. (2017). Editorial Perspective: Neurodiversity – a revolutionary concept for autism and psychiatry. Journal of child psychology and psychiatry, and allied disciplines, 58(6), 744–747.

Botha, M., & Cage, E. (2022). “Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research. Frontiers in Psychology, 13, 1050897.

Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding Ableist Language: Suggestions for Autism Researchers. Autism in adulthood : challenges and management, 3(1), 18–29.

Bradshaw, P., Pickett, C., van Driel, M. L., Brooker, K., & Urbanowicz, A. (2021). ‘Autistic’ or ‘with autism’? Why the way general practitioners view and talk about autism matters. Australian journal of general practice, 50(3), 104–108.

Cohen, S. R., Joseph, K., Levinson, S., Blacher, J., & Eisenhower, A. (2022). “My Autism Is My Own”: Autistic Identity and Intersectionality in the School Context. Autism in adulthood: challenges and management, 4(4), 315–327.

Diemer, M. C., Gerstein, E. D., & Regester, A. (2022). Autism presentation in female and Black populations: Examining the roles of identity, theory, and systemic inequalities. Autism, 26(8), 1931–1946.

Menjívar, C. (2023). State categories, bureaucracies of displacement, and possibilities from the margins. American Sociological Review, 88(1), 1–23.

Tesfaye, R., Courchesne, V., Mirenda, P., Mitchell, W., Nicholas, D., Singh, I., Zwaigenbaum, L., & Elsabbagh, M. (2023). Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth. Autism : the international journal of research and practice, 27(4), 1142–1156.