Self-diagnosis of autism is a frequently discussed and sometimes contentious topic within both the autistic community and the broader medical and psychological fields. With increasing awareness of autism and its diverse presentations, many individuals are exploring the possibility of being autistic themselves. This exploration often begins with self-assessment, leading to the question: How accurate is self-diagnosis of autism, and is it a valid form of identification?
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This article delves into the accuracy of self-diagnosis in autism, drawing upon community insights, research, and expert perspectives. We will examine the reasons why self-diagnosis is prevalent, the barriers to formal diagnosis, and the growing body of evidence supporting the validity of self-identification within the autistic community. It’s crucial to understand the nuances of this issue to foster a more inclusive and supportive environment for individuals who identify as autistic, regardless of formal diagnosis.
Self-Diagnosis: A Widely Accepted Concept in the Autistic Community
Within the autistic community, self-diagnosis is not only common but also widely accepted as a valid form of identification. Surveys and community discussions consistently show a significant portion of autistic individuals believe that a formal diagnosis should not be a prerequisite for identifying as autistic.
One notable survey conducted by Chris Bonnello of Autistic Not Weird in 2022, which gathered responses from approximately 7500 autistic individuals, provides valuable data on this perspective. The survey directly asked respondents if they agreed with the statement: “A diagnosis should not necessarily be required for someone to identify as autistic.” An overwhelming 64% of autistic respondents agreed, indicating a strong community consensus that self-identification holds validity. This acceptance stems from lived experience and a recognition of the numerous obstacles that prevent many autistic individuals from obtaining a formal diagnosis.
Formidable Barriers to “Official” Autism Diagnosis
The path to a formal autism diagnosis is often fraught with obstacles, making self-diagnosis a necessary and sometimes only viable route for many. These barriers are multifaceted and can be insurmountable for a significant portion of the population.
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Prohibitive Costs: Autism evaluations are expensive, especially in countries like the United States. For children, the average cost ranges from $1500 to $3000, and adult evaluations often exceed these figures. This financial burden immediately excludes individuals and families who cannot afford these assessments out-of-pocket.
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Insurance Coverage Limitations: Even with insurance, coverage for autism evaluations is not guaranteed. Many insurance plans deem these evaluations “not medically necessary” and deny claims. Furthermore, the complexities and administrative burdens of dealing with insurance have led to a decrease in the number of evaluators who accept insurance, further limiting access.
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Limited Availability and Extensive Wait Times: Access to qualified professionals who can conduct autism evaluations is severely limited, leading to lengthy wait times. A 2023 report by Cognoa revealed that families in the US seeking autism evaluations for their children face an average wait of three years. Adult assessments are even more challenging to access, with wait times stretching for months or even years, and very few professionals specializing in adult autism assessments.
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These systemic barriers disproportionately affect marginalized communities, including adults, women, people of color, and those with lower socioeconomic status. Since autism is a neurodevelopmental condition present from early childhood, individuals who are unable to navigate these barriers are still autistic and deserve recognition and support.
The Fallibility of Professional Evaluations in Autism
While formal diagnoses are often perceived as the gold standard, it’s crucial to acknowledge that professional evaluations are not infallible. Misdiagnosis and missed diagnoses occur, even by trained professionals, highlighting the limitations of the diagnostic process.
Personal anecdotes and research both underscore this point. The author’s own experience of initially being told they were not autistic, despite scoring highly on autism assessments, illustrates the potential for evaluator bias and misunderstanding. In this case, the initial evaluators incorrectly reasoned that the author’s communication skills and life circumstances (being married and employed) were incompatible with autism – perpetuating harmful stereotypes. A subsequent evaluation by a different professional correctly identified autism, demonstrating the subjectivity and potential for error in the diagnostic process.
Research further supports the reality of misdiagnosis and underdiagnosis, particularly in specific demographics. Studies show that autism is significantly underdiagnosed in Black and Latinx communities, as well as in individuals who are not cisgender males. This disparity highlights systemic biases in diagnostic criteria and evaluator practices, leading to unequal access to diagnosis and support.
The possibility of inaccurate professional evaluations reinforces the validity of self-diagnosis. If individuals can be incorrectly denied a diagnosis by professionals, and if access to accurate diagnosis is limited, then self-identification becomes an even more crucial pathway to understanding and support.
Risks Associated with Having an “Official” Autism Diagnosis
For some individuals, the decision to self-diagnose is not solely driven by barriers to formal assessment but also by concerns about the potential risks associated with having an autism diagnosis in their medical records. These risks, while not universally applicable, are significant enough to warrant consideration.
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Autism Registries: In some regions, including eight states in the US, autism diagnoses are included in government registries. This raises privacy concerns and the potential for misuse of this information.
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Immigration Restrictions: Certain countries have immigration policies that discriminate against autistic individuals, potentially denying visas based on an autism diagnosis.
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Loss of Autonomy: There are documented cases of autistic individuals being placed under conservatorship or guardianship, stripping them of their legal autonomy and decision-making rights.
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Medical Discrimination: Disturbingly, autistic individuals have reported instances of medical discrimination, including being given Do Not Resuscitate orders without consent or being denied organ transplants solely based on their autism diagnosis.
These potential risks underscore the valid reasons why some individuals may choose to self-diagnose and avoid formal diagnostic processes. Self-diagnosis, in such cases, becomes a protective measure against potential discrimination and systemic biases.
The Accuracy Rate of Self-Diagnosis in the Autistic Community
Perhaps the most compelling argument for the validity of self-diagnosis lies in the emerging research on its accuracy within the autistic community. While self-diagnosis is sometimes dismissed as unreliable in other conditions, studies are beginning to show a different picture for autism.
One key piece of evidence comes from research using the Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS–R), a self-report questionnaire designed to assess autistic traits in adults. Studies have indicated that the RAADS-R consistently yields elevated scores in individuals who self-identify as autistic. Furthermore, recent research suggests that the RAADS-R has a remarkably high predictive accuracy in determining whether someone would meet diagnostic criteria for autism based on more comprehensive assessments. This suggests that self-report measures, and by extension self-diagnosis, can be surprisingly accurate in identifying autism in adults.
It is important to acknowledge that self-diagnosis is not a replacement for formal diagnosis, particularly when seeking specific accommodations or formal support services that require documented proof of diagnosis. However, for personal understanding, community connection, and self-advocacy, self-diagnosis holds significant validity and should be respected. Moreover, given the limitations of formal diagnostic pathways and the potential for misdiagnosis, self-identification often serves as a crucial first step towards self-discovery and acceptance for many autistic individuals.
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Moving Forward: Embracing Self-Identification and Accurate Diagnosis
Ultimately, the discussion around self-diagnosis of autism should shift from questioning its validity to understanding its necessity and accuracy within the autistic community. Self-diagnosis is often a valid, accurate, and empowering first step for individuals on their autistic journey.
For those who suspect they might be autistic, resources like Embrace Autism offer free self-assessments and educational materials to aid in self-discovery. It is crucial to remember that self-knowledge and community belonging are valuable in themselves, regardless of formal labels. While pursuing a formal diagnosis can be beneficial for accessing specific services, self-identification deserves recognition and respect as a legitimate form of autistic identity.
