By K.N.
The point of obtaining ASD diagnosis in adulthood
Prior to diagnosis, many people who suspect being on the spectrum experience feelings of being different and not “fitting in”, while not appearing any different from their peers. Many experience years of bullying, isolation, and feeling misunderstood, prior to diagnosis. Research shows that without a formal diagnosis, individuals are at a high risk of mental illness and suicide. Obtaining a new diagnosis does not automatically provide relief, in fact, it actually increases an individual’s risk of developing anxiety and depression. Moreover, people with ASD, may not present with typical symptoms of depression, thus they may “fly under the radar” and consequently not receive much-needed support. (1)
Diagnosis during adulthood can have a positive impact on one’s self-concept, as a medical label can provide an explanation for a lifetime of challenges and struggles. A recent study explored the fundamental qualities of the experience of being diagnosed with ASD in adulthood. The study identified six themes that were common to all participants, who came from a variety of backgrounds. The themes were identified as corresponding to consecutive phases in the evolution of self-concept: (1) a perception of always having been “different” from others, (2) riding the emotional roller-coaster, (3) striving for self-acceptance, (4) strategizing towards a better life, (5) maintaining normalcy, and (6) wandering into the future. (1)
Perception of “always being different from others”, interestingly included both negative and positive conceptions of differences. Some viewed themselves as “unique”, however, the differences were most often associated with negative self-perceptions. Adults also commonly experienced an “emotional rollercoaster” following diagnosis. Some experienced relief and a sense of clarity, while others reported going through a mourning phase, due to a loss of a sense of “uniqueness”. Commonly reported were experiences of denial and depression, immediately following a diagnosis. Nevertheless, participants largely reported experiencing an overwhelming sense of relief and empowerment. (1)
The process of acceptance of one’s autistic identity was described as involving a re-evaluation of one’s childhood experiences and incorporating a new aspect of identity into a larger self-concept. Increased self-understanding led to increased self-acceptance. Interestingly, many adults reported feeling much more comfortable with their autistic traits and not hiding their autistic behaviors, or trying to fake “normal behavior”, the way they did before the diagnosis. However, this new self-understanding and acceptance were not instantaneous – for many, it was a long and harrowing process. Some reported continued struggles, as they felt they needed to hide their ASD at work or around friends and family. Thus, the presence of a supportive environment is crucial to people’s ability to accept and integrate their autistic traits into their self-concept. (1)
“the presence of a supportive environment is crucial to people’s ability to accept and integrate their autistic traits into their self-concept”
Reconciling with your past and preparing for your future
Some mentioned feeling glad that they were not diagnosed with ASD in childhood, as they felt it allowed them to develop a self-concept not associated with a medical diagnosis, and to learn to cope with difficult situations on their own. Others also noted that they likely would not have completed post-secondary education, if they had known they had a neurodevelopmental disorder. In contrast, some people felt angry at not having been diagnosed in childhood, and not having received early interventions for ASD. This perception was associated with attributing negative life experiences, as resulting from undiagnosed ASD. (1)
People commonly identified concerns about the future, particularly about disclosing their diagnosis to a wider circle, which was associated with a fear of being misunderstood due to stigma, or disclosure being perceived as “making excuses”. Participants also reported negative reactions from family and friends, some of whom denied the diagnosis altogether. Loss of friendships and invalidation, following disclosure of diagnosis, were common themes. (1)
The next phase in identity re-structuring involved finding new strategies and tools to navigate life on the spectrum. Increased access to resources in the community and at institutions, was reported, as was learning effective social communication strategies. Individuals began to view their autistic traits in a more positive light, and uncover strengths related to ASD. Before the diagnosis, autistic traits were reportedly viewed as personality flaws and undesirable character traits. (1) In another recent study, newly diagnosed adults searched for new coping strategies, while making adjustments to their expectations. Following a diagnosis, individuals were better able to recognize their unique needs and access appropriate supports. Individuals reported a shift in personal goals, from trying to be “normal”, to develop new adaptations and accommodation strategies. (2)
Another common theme was a reported sense of relief and comfort, after diagnosis, perhaps due to a realization that self-acceptance is possible. A diagnosis makes self-acceptance legitimate, as individuals no longer see certain traits as something that needs to be fixed or improved on. Since some of the traits present in ASD are life-long, giving oneself permission to accept oneself, is liberating. For many, an adult diagnosis is preceded by years of pursuing unhelpful treatments, due to having been misdiagnosed. Obtaining a correct diagnosis can be liberating in that it relieves the pressure to be “normalized” and helps alleviate the feeling of personal failure. (2) Obtaining a diagnosis does not mean that people will give up on their goals and become low-achievers. A common perception is that ASD diagnosis in adulthood is an “excuse” for people to stop trying to overcome challenges. Such negative, invalidating misperceptions, is unfortunately still quite common. Perhaps this is why autistic self-advocacy is so important.
“Biographical illumination” – The re-evaluation of one’s personal identity
People diagnosed with ASD in adulthood, are more likely to experience it as an enhancement of their existing identity, through a process of “biographical illumination”, which refers to a process of enhancing one’s self-concept, through increased self-knowledge, which often comes with a diagnosis. A recent study examines how individuals engage with a diagnostic medical label of ASD, in the context of their identities. The study examined autistic perspectives and lived experiences of adults with ASD, who were diagnosed in adolescence or adulthood. The participant’s motivation for seeking a diagnosis in adulthood was to confirm a self-diagnosis and to find an explanation for ongoing challenges. Biographical illumination is described as involving three main components: the re-interpretation and re-evaluation of one’s personal identity, adjustments to one’s expectations of adaptations, and entry into a community. (2)
ASD diagnosis in adulthood can have significant implications for one’s self-concept. A diagnosis provides a person with a new context to re-evaluate one’s past and reframe certain events in a more positive light. This new knowledge allows one to potentially develop a greater degree of self-compassion, as past challenges and personal shortcomings are reinterpreted. Living with undiagnosed ASD can have a devastating effect on self-esteem, especially when individuals internalize their struggles, and attribute them to personal deficits and character flaws. Adults in the study remarked on always having been able to sense that something was “wrong” with them, and not knowing the reason for this apparent defect. (2)
In a recent study, individuals described being diagnosed with ASD in adulthood, largely as a positive experience. ASD diagnosis was described as a way to gain more insight into challenges. Personal narratives revealed a positive shift in self-concept, from self-devaluation and perception of one’s challenges as “failures” to a more positive self-perception. Notably, a shift from seeing oneself as “weird” and “broken”, to seeing oneself as “different”, was reported. Understanding one’s unique traits as part of a certain “neurotype” or neurological difference can be helpful in validating one’s positive self-concept. Moreover, one’s past can be translated into a more positive narrative. After obtaining a diagnosis, both past challenges and strengths can be reconceptualized and enriched by new meaning. (2)
Those diagnosed in adulthood, are more likely to experience biographical illumination through involvement in autism activism movements such as the neurodiversity movement. The neurodiversity movement aims to reduce the stigma around ASD by promoting the view of ASD as a difference, not a disorder. Biographical illumination is a transformative process through which one’s identity moves beyond a medical diagnosis. In this process, a medical diagnosis adds positive meaning to one’s identity. The development of one’s self-concept is facilitated by the acquisition of a new medical diagnosis, as it grants one group membership, an opportunity to meet people who share this diagnosis. Moreover, the process of biographical illumination is most applicable to neurological and neurodevelopmental differences, as brain differences are closely related to differences in identity development. (2)
In the study, the author contrasts biographical illumination with biographical disruption, a process which involves a complete re-structuring and re-negotiation of one’s self-concept, usually in the context of terminal illness. Biographical disruption is defined by loss – losing a part of ourselves we have taken for granted, losing health, and losing basic resources. In contrast, biographical illumination is fundamentally a process characterized by positive gains. (2)
It is interesting to view the distinction between biographical illumination and biographical disruption, as reflective of identity-first, and person-first language, respectively.
Unknown Perspectives, unheard voices
The different perceptions of identity in relation to autism, are likely mediated by an individual’s unique experiences. The neurodiversity movement is popular among individuals diagnosed in adulthood or adolescence. De-medicalization of autistic identity may be a reality to those who do not experience profound disability. The extent to which autism is a difference or a disability depends on each unique situation. The limitations of the neurodiversity perspective, is that it largely represents the voices of high functioning autistics, thus providing a skewed perspective on the issue. The voices of individuals with higher support needs are to a large extent not represented within the neurodiversity movement. The perspectives on autistic identities of those who are unable to communicate verbally are largely unknown. Based on current diagnostic measures, it is often assumed that individuals who have limited verbal communication skills have limited agency, and therefore these individuals often do not have an opportunity to express their views. Perhaps, in the future, more focus can be made towards finding ways to learn about the first-person perspectives of individuals with high support needs, their lived experiences, and their understanding of self-concept.
References:
- Lewis LF. Realizing a diagnosis of autism spectrum disorder as an adult. International journal of mental health nursing. 2016 Aug;25(4):346-54.
- Tan CD. “I’m a normal autistic person, not an abnormal neurotypical”: Autism Spectrum Disorder diagnosis as biographical illumination. Social Science & Medicine. 2018 Jan 1;197:161-7.