Devon Webb - 2025 Writers series
On The Validity of Self-Diagnosis
Public awareness of autism spectrum disorder has increased significantly in the digital age of social media, and thus, so has the frequency of self-diagnosis, particularly among younger generations. This rise in discussions of autism outside of a medical framework has received criticism, but what does it actually mean for those people identifying with the label?
Personal Experience
I didn’t realise I was autistic until age 22, when a peer described me as such. I had always associated autism with the stereotypes—limited expression of emotion, social difficulties, a fondness for trains or some other niche scientific interest. I, on the other hand, was a young woman with too much empathy who often put her foot in it by being too vocal or expressing an apparently unacceptable amount of emotion. It was through my own research, including but not limited to social platforms like TikTok and Instagram where other neurodivergent people were creating authentic content about their lived experiences, that I discovered the diversity of the autistic spectrum beyond the 20th-century research focused predominantly on young white males.
I noticed a marked improvement in my life once I started self-identifying as neurodivergent and learning more about autism and ADHD through the algorithms feeding me the content I was clearly resonating with. I now had words for the things I was experiencing, like ‘meltdowns’, ‘overstimulation’ and ‘rejection sensitivity dysphoria’. Because of this, I was better able to communicate my needs with my peer group and understand why I was so affected by the environment around me. In a world where sensitivity is mocked and belittled, self-diagnosis enables self-advocacy.
Then vs. Now
When I told my mother I thought I might be autistic I was expecting resistance to the idea, but she told me she’d suspected the same since my childhood, she just didn’t want me to feel like I was being assigned a ‘label’. I think this aversion to labels is reflective of the stigmas surrounding autism that were so pervasive in the 20th century and still remain entrenched in our understanding (or lack thereof) of the condition. My initial reaction when she told me this was wow, everything would’ve made so much more sense if I had known, although I also understand and respect her reasoning for not seeking childhood diagnosis—it may have set me apart from others in a way that was more debilitating than helpful and led to resentment of my diagnosis. But seeking the label of my own accord when it felt enlightening and liberating has enabled me to sidestep any internalised stigma and embrace autism as the part of me I never previously had the context to fully understand.
Starting Points
Something that’s never made sense to me regarding the dismissal of self-diagnosis is that self-diagnosis is a starting point for every diagnosis. You feel sick, you go to the doctor. You have mental health struggles, you seek support from your peers or a professional. Self-diagnosis is no new or unusual concept; it’s just the stigma of autism setting it apart from other conditions. The historic lack of medical understanding and diagnosis, particularly of anyone who isn’t a white male exhibiting the stereotypical traits, has created the idea that autism is a rare thing, a label reserved only for those requiring the most support. But many autistic people need some level of support, and self-diagnosis helps them seek that in a society unlikely to provide it for them unprompted.
Barriers to Diagnosis
I am very lucky to have parents who were able to financially support me in my medical diagnosis journey, but economic barriers are a key reason why some people only have access to self-diagnosis. The lack of diverse research in the medical industry also plays a part—I paid $1400 for a man to inform me that he wouldn’t even give me the test for ASD because I was ‘social’ and ‘made eye contact’, as if my lack of a filter and habit of oversharing wasn’t a key part of my problem. It is this systematic gatekeeping and lack of resources that makes medical diagnosis so challenging and impractical, not to mention frequently upsetting due to ignorance in the industry. Thus, it is my belief that there is an unhelpful prejudice—and perhaps privilege—in advocating for it as the only valid form of diagnosis while condemning those who may not have the support to pursue medical diagnosis.
Trend or Truth?
The rise in individuals identifying as neurodivergent has been dismissed by some as a ‘trend’, but perhaps its appearance as such is inevitable in a time where we are only now widening our understanding of the condition beyond the stereotypes of past decades. And so much of this is because of the accessibility of online platforms, where people can seek out the content that speaks to them and learn about neurodivergence through the first-hand knowledge of actual neurodivergent people rather than the sociologically limited research of neurotypical institutions. The internet has served this century by bringing us together, and it is this sense of community that helps neurodivergent people overcome the isolation they are often faced with, learn more about themselves, and educate others. This is something to be celebrated, not scoffed at.
And what is the harm in people identifying as autistic without a formal diagnosis (which is unattainable for many)? They gain understanding of a marginalised group, knowledge of different forms of communication and the difficulties they or others may face, self-advocacy skills, and ways to accommodate their own needs. There are no resources they are stealing from others; they are just finding community and empowerment through a word that is historically weighed down with misunderstanding and stigma. The rise in autism awareness and diagnosis, self-made or otherwise, is a testament to the diversity and progression of our society and only helps to strengthen and uplift the neurodivergent community.
KEY POINTS
- Awareness of autism has increased due to social media and access to a more diverse understanding of the condition.
- Self-diagnosing has helped me and others learn more about ourselves and advocate for our own needs.
- There is stigma surrounding the condition due to a limited understanding throughout the 20th century, which we are now beginning to challenge.
- Self-diagnosis is a common starting point for professional diagnosis, which is often inaccessible due to financial barriers and ignorance in the medical industry.
- The rise in self-diagnosis of autism can be attributed to social media and the communities it helps build, but this is due to increased exposure to a broad understanding rather than a ‘trend’.
- There is no harm in self-diagnosis; it should be celebrated for its ability to empower individuals and the neurodivergent community as a whole.