Deciding whether or not to pursue an autism diagnosis is a deeply personal and often complex decision. While for many, a diagnosis can be a validating and empowering step towards self-understanding and accessing support, it’s crucial to acknowledge that there are also valid reasons why some individuals might choose not to seek or pursue a formal diagnosis. This article will explore some of the key reasons why someone might decide against getting an autism diagnosis, aiming to provide a balanced perspective and empower informed decision-making.
Potential Stigma and Social Discrimination
One significant concern for individuals considering autism diagnosis is the potential for increased stigma and social discrimination. Despite growing awareness and acceptance of neurodiversity, prejudice and misunderstanding surrounding autism still exist in many areas of society. A formal diagnosis can, unfortunately, lead to negative perceptions from others, impacting various aspects of life.
This stigma can manifest in different forms. In employment, individuals with an autism diagnosis might face discrimination in hiring processes or experience limitations in career advancement due to misconceptions about their abilities. Socially, a diagnosis can lead to being treated differently by peers, family, or even within romantic relationships. Some studies, like Brosnan and Mills (2016), have explored how diagnostic labels can affect affective responses towards individuals, highlighting the potential for negative biases. Botha et al. (2020) further investigated how autistic individuals make sense of autism and stigma, showing the lived reality of these challenges.
:max_bytes(150000):strip_icc():format(webp)/GettyImages-1290096422-f317c8821a044034b453e1494f18879c.jpg)
The fear of such negative consequences is a legitimate reason for some to avoid a formal diagnosis. They might worry about being defined by the label, losing opportunities, or facing unfair judgment based on societal biases. For some, navigating life without a formal label might feel like a way to protect themselves from potential discrimination and maintain a sense of normalcy within their social circles.
Concerns About Self-Perception and Identity
While for many, an autism diagnosis can be identity-affirming and lead to a greater understanding of oneself, for others, it can trigger concerns about self-perception and potential negative shifts in identity. Some individuals worry that receiving a diagnosis might lead to internalizing a “sick role” or viewing themselves primarily through the lens of a disorder, rather than as a whole person with unique strengths and challenges.
Corden et al. (2021) explored personal identity after an autism diagnosis and its relationship with self-esteem and mental wellbeing. Their findings suggest that while diagnosis can be positive, the process of identity re-evaluation can also be complex and emotionally challenging for some. Mogensen and Mason (2015) also highlighted the meaning of a label for teenagers negotiating identity, showing that while labels can provide understanding, they can also be fraught with personal and social complexities.
For individuals who have built their self-concept and life narrative without understanding their autistic traits within a diagnostic framework, the prospect of re-evaluating their identity post-diagnosis can be daunting. They might fear that the diagnosis will overshadow their existing sense of self, leading to a feeling of being fundamentally changed or defined by a label they did not previously identify with. For some, particularly those diagnosed later in life (Stagg and Belcher, 2019), the diagnosis can disrupt their established life narrative and require significant personal adjustment.
Limited or Inadequate Post-Diagnostic Support
A significant deterrent for seeking an autism diagnosis is the often-reported lack of adequate and accessible post-diagnostic support services. Many individuals find that obtaining a diagnosis is only the first step, and that accessing meaningful support and interventions afterward can be a significant struggle.
Research consistently highlights gaps in post-diagnostic support for autistic adults (Wigham et al., 2023; Scattoni et al., 2021). Adults often report feeling “dropped off a cliff” after diagnosis, with limited guidance or resources available to help them navigate their lives as newly diagnosed autistic individuals. This lack of support can be particularly frustrating for those who seek diagnosis hoping to access practical help, therapy, or accommodations.
The reality is that in many regions, services for autistic adults are underfunded and overstretched. Waiting lists for therapy, support groups, or vocational assistance can be long, and the types of support available might not always be tailored to individual needs. Hatten and Lee (2022) evaluated online post-diagnostic groups, suggesting some avenues for support, but also highlighting the need for more comprehensive and varied options. Crane et al. (2021) evaluated an autistic-led program showing promise, but such programs are not universally available.
If individuals perceive that a diagnosis will primarily lead to a label without tangible benefits in terms of support, they may understandably question the value of undergoing the diagnostic process. They might feel that the emotional and practical costs of seeking diagnosis outweigh the potential gains if adequate post-diagnostic support is not readily available.
Financial and Practical Barriers to Diagnosis
The process of obtaining an autism diagnosis can itself present financial and practical barriers, which may deter some individuals from pursuing it. In many healthcare systems, diagnostic assessments can be expensive, particularly for adults seeking private assessments to avoid long wait times in public systems.
Financial costs can include fees for initial consultations, comprehensive assessments, and follow-up appointments. For individuals with limited financial resources or inadequate insurance coverage, these costs can be prohibitive. Beyond direct costs, there are also indirect practical barriers. The diagnostic process can be time-consuming, requiring multiple appointments, travel to assessment centers, and potentially taking time off work or other commitments. For those with busy lives, caring responsibilities, or difficulties with travel, these practical hurdles can make accessing diagnosis challenging.
Furthermore, the diagnostic pathways themselves can be complex and confusing. Navigating referral processes, understanding eligibility criteria, and advocating for oneself within healthcare systems can be overwhelming, especially for individuals already experiencing challenges with executive function or communication – traits often associated with autism. Lewis (2017) and Lewis (2018) explored barriers to formal diagnosis in adults, highlighting systemic and personal obstacles individuals face.
These financial and practical barriers can disproportionately affect individuals from marginalized communities, further limiting access to diagnosis for those who may already face systemic disadvantages. If the process of seeking diagnosis is perceived as too costly, time-consuming, or practically challenging, it can be a significant reason for individuals to decide against pursuing it.
Fear of Labeling and Its Potential Consequences
The act of being “labeled” with a diagnosis, even one that is intended to be helpful, can be a source of anxiety for some individuals. There is a concern that a diagnosis might lead to being seen and treated differently, not just by society at large (as discussed under stigma), but also by professionals, institutions, and even loved ones in ways that are not always beneficial.
For example, some worry that a diagnosis could negatively impact decisions made by educational institutions, legal systems, or social services. While in theory, a diagnosis should facilitate access to accommodations and support, there is a concern that in practice, it might lead to lowered expectations, limitations on autonomy, or even discriminatory practices within these systems. The Criminal Justice Joint Inspection (2021) report on neurodiversity in the criminal justice system highlights the complexities and potential biases within such systems.
Additionally, the fear of being permanently categorized or defined by a label can be a deterrent. Some individuals might resist the idea of being reduced to a diagnostic category, preferring to see their traits as part of a broader spectrum of human variation rather than as indicators of a disorder. Kapp et al. (Deepdyve) discussed the “deficit, difference, or both?” perspective on autism, reflecting the ongoing debate about how autism is framed and understood, and how these framings can impact individual experiences.
This fear of labeling is not necessarily about denying the reality of one’s experiences, but rather about resisting potentially limiting or negative consequences that might be associated with a formal diagnosis within various societal structures.
When Diagnosis Might Not Change Anything
For some individuals, a key reason for not pursuing a diagnosis is the perception that it might not actually change anything in their lives in a meaningful way. If someone has developed coping mechanisms, built a fulfilling life, and feels relatively well-adjusted without a diagnosis, they might question the necessity or value of seeking one.
This perspective is particularly relevant for adults who have lived undiagnosed for many years and have learned to navigate the world in their own way. They may have already found strategies to manage challenges related to sensory sensitivities, social communication, or executive function, even without knowing these were linked to autism. Stagg and Belcher (2019) explored the experiences of living with autism without knowing and receiving a diagnosis later in life, showing that for some, life is already in motion, and diagnosis might not fundamentally alter their daily experiences.
In cases where individuals are primarily seeking self-understanding or validation, self-diagnosis and community engagement within autistic online spaces might feel sufficient. Overton et al. (Springer Link) reviewed self-identification of autism in adults, and Lewis (Archives of Psychiatric Nursing) explored the experience of self-diagnosis, suggesting that for some, formal diagnosis might not be the only or necessary path to self-acceptance and community.
If an individual does not anticipate needing formal accommodations, legal protections, or access to specific support services, and if they are content with their current level of self-understanding, then the perceived benefits of a formal diagnosis might be minimal, making it a less compelling path to pursue.
Conclusion: Informed Choice is Key
Choosing whether or not to pursue an autism diagnosis is a deeply personal decision with valid reasons on both sides. While a diagnosis can offer numerous benefits, including self-understanding, access to support, and community connection, it is equally important to acknowledge and respect the reasons why some individuals might choose not to seek one. Concerns about stigma, potential negative impacts on self-identity, limited post-diagnostic support, financial and practical barriers, fear of labeling, and the perception that diagnosis might not lead to significant life changes are all legitimate considerations.
Ultimately, the most important factor is informed decision-making. Individuals considering diagnosis should weigh the potential benefits against the potential downsides based on their own unique circumstances, needs, and priorities. Understanding the reasons why some choose not to get an autism diagnosis is crucial for fostering empathy, respecting individual autonomy, and ensuring that discussions around autism diagnosis are nuanced and person-centered. Further research and improved post-diagnostic support systems are essential to ensure that the diagnostic process is a truly empowering and beneficial experience for all autistic individuals, regardless of whether or not they choose to pursue a formal label.
References
Author: Abbott et al. (2013) Title: Communicating a diagnosis of Autism Spectrum Disorder – a qualitative study of parents’ experiences Source: Clinical Child Psychology and Psychiatry 18(3): 370-382
Author: Brosnan and Mills (2016) Title: The effect of diagnostic labels on the affective responses of college students towards peers with ‘Asperger’s Syndrome’ and ‘Autism Spectrum Disorder’ Source: Autism 20(4): 388-394
Author: Botha et al. Title: “Autism is me”: an investigation of how autistic individuals make sense of autism and stigma Source: Taylor & Francis Online
Author: Corden et al. (2021) Title: Personal Identity After an Autism Diagnosis: Relationships With Self-Esteem, Mental Wellbeing, and Diagnostic Timing Source: Frontiers in Psychology, 12: 1-12
Author: Crane et al. (2021) Title: Supporting newly identified or diagnosed autistic adults: An initial evaluation of an autistic-led programme. Source: Journal of Autism and Developmental Disorders: 51(3), 892-905,
Author: Criminal Justice Joint Inspection Title: Neurodiversity in the criminal justice system: A review of evidence Source: Criminal Justice Joint Inspection (2021)
Author: Hatten and Lee (2022) Title: An evaluation of the online post-diagnostic groups facilitated by the autism spectrum condition service at Gloucestershire Health and Care NHS Source: Advances in Autism, 8(4): 319-331
Author: Kapp et al. Title: Deficit, Difference, or Both? Autism and Neurodiversity Source: Deepdyve
Author: Lewis Title: Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults Source: Archives of Psychiatric Nursing
Author: Lewis Title: “A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults” Source: Springer Link
Author: Mogensen and Mason (2015) Title: The meaning of a label for teenagers negotiating identity: experiences with autism spectrum disorder Source: Sociology of Health and Illness 37(2): 255-269
Author: Overton et al. Title: Understanding the Self-identification of Autism in Adults: a Scoping Review Source: Springer Link
Author: Scattoni et al. (2021) Title: Real-world experiences in autistic adult diagnostic services and post-diagnostic support and alignment with service guidelines: Results from the ASDEU study Source: Journal of Autism and Developmental Disorders: 51, 4129-4146,
Author: Stagg and Belcher (2019) Title: Living with autism without knowing: receiving a diagnosis in later life Source: Health Psychology and Behavioral Medicine: an Open Access Journal, 7(1): 348-361,
Author: Wigham et. al. (2023) Title: Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians Source: Autism: 27(2,)344-355
