What actually constitutes as a late diagnosis for Autism Spectrum Disorder (ASD) has been up for debate for years. Some studies and institutions cite any diagnosis after 12 years of age as being the cut-off (Hoxworth, 2022), whereas some argue it could be as young as three (Russell et al., 2025). Regardless of any official number, however, many of those on the spectrum- whether they were told at 13 or 55- often have the same question following that final diagnosis:
“Why didn’t anyone do anything sooner?”
When I posed this question to my mother, I tended to get one consistent reply: “We just didn’t know anything about autism back then” – and, in her defense, this was probably true. Between 1998 and 2018, there was a 787% rise in the number of autism diagnoses in the UK, with figures almost doubling between 2013 and 2018 alone (Russell et al, 2022). More recently, in March 2025, 224,382 people were waiting for an autism assessment across England, with 89.9% waiting for longer than 13 weeks (NHS England, 2025). That being said, I don’t believe my parents were entirely in the dark. While knowledge of ASD amongst the general public was limited in the 2000s and 2010s, a few of my family members- such as my nana and auntie- had approached my parents about some of my ‘odd’ behaviors. My volatile emotions, my struggles gelling with other children- they had all been brought to my parents’ attention in one way or another, but ultimately ignored, primarily because of my high academic performance. While I don’t think this was done on purpose, I do believe there was something that influenced their decisions- or lack thereof: stigma.
Stigma is defined as a “negative social attitude attached to a characteristic of an individual that may be regarded as a mental, physical, or social deficiency” (APA, 2018). While autism and autistic individuals are not free of stigmatization just yet, over the last few years, it feels as if it has begun to ease up, with more people both on and off the spectrum discussing it openly. While my parents are not ashamed to disclose my autism to others today, I suspect it was a different story when I was younger.
Autism, regardless of how it presents, is a disability, and the prospect of having a disabled child is daunting or even disappointing to a lot of parents- especially when your child seems fine when you disregard those few ‘quirks.’ As a result, denial can set in – or at least it did for my parents. There was the assumption that I would simply grow out of my more questionable behaviors or learn to deal with them, which I did for the most part, but only as a result of masking. Not only that, but since I grew up unaware of autism, I didn’t understand that I functioned differently because of it; I just thought I was innately damaged and weird, regardless of how ‘normal’ I could behave. It’s a common misconception amongst parents of neurodivergent children that labeling their child will single them out for more ridicule, but this fails to account for the years of hardship and self-hatred that could be avoided by simply knowing your brain is different.
Ultimately, at the age of 21, the decision to chase a diagnosis was in my hands. A chase which, under the UK health system, took almost a full year. However, as mentioned in my previous article, the diagnosis didn’t solve everything. Because I had been brought up with the idea that nothing was different, I was just existing wrong, I was still holding myself to neurotypical standards and was highly judgmental of my own behaviors, even after I knew the cause. Only now do I know that this, in itself, is a form of stigma. Internalised stigma.
It’s a topic I’ve bonded with a lot of my neurodivergent peers about, but especially with my partner, as her situation was almost identical to mine. My fiancée Angelina’s Attention Deficit Disorder (ADD) was overlooked for the first 18 years of her life. Despite voicing her struggles to her family, her impressive academic performance and responsible behavior made the prospect of her having such a condition unbelievable. However, when she got to college, she realized she couldn’t avoid the issues she was having. In a single appointment, she was diagnosed with ADD and prescribed medication, which continued to help her all the way through her nursing degree. In contrast to my situation, however, the speed at which she was diagnosed only fuelled her internalized stigma. To her, it was a confirmation that all her insecurities were true. Even when people reacted to her diagnosis with kindness and consideration, she couldn’t help but feel disappointed in herself and didn’t feel deserving of their concern as she was used to handling her problems on her own. Not only that but knowing what it was like to be medicated made her even more aware of her differences and how things could have been if she had gotten help earlier.
With all this in mind, the cycle of stigma can feel never-ending. A negative opinion of neurodiversity or neurodiverse individuals can delay diagnoses, disallowing people from understanding themselves and preventing them from accepting themselves even when they get that all-important explanation. Thankfully, though, it’s not impossible to overcome. If there’s something Angelina has that I don’t, it’s incredible resilience and self-compassion, crucial tools in combating internalized stigma. While those negative attitudes and thoughts of ‘why not earlier?’ can still emerge, she pushes them back with a simple phrase: “Better late than never!”- and it is better late than never. Better to recognize these feelings now and begin the journey to unlearn them than allow the cycle to continue. Only by recognizing and defying stigma can we, as a community, work towards erasing it.
Ly Stewart is a British BA(Hons) Broadcast Journalism and MSc Media Psychology graduate with 25+ bylines to their name. Ly’s mix of creative and analytical backgrounds has given them a passion for research, especially in regard to autism, media, and internet culture. Ly can be reached at emilyrosestewart7@gmail.com
References
American Psychological Association (2018) Stigma. APA Dictionary of Psychology. https://dictionary.apa.org/stigma
Hoxworth, L. (2022) Solving the Problem of Late Autism Diagnosis. University of Virginia: School of Education and Human Development. https://education.virginia.edu/news-stories/solving-problem-late-autism-diagnosis
NHS England (2025) Autism Statistics, April 2024 to March 2025. NHS England Digital. https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics/april-2024-to-march-2025
Russell, A. S., McFayden, T. C., McAllister, M., Liles, K., Bittner, S., Strang, J. F., & Harrop, C. (2025). Who, when, where, and why: A systematic review of “late diagnosis” in autism. Autism Research, 18(1), 22–36. https://doi.org/10.1002/aur.3278
Russell, G., Stapley, S., Newlove-Delgado, T., Salmon, A., White, R., Warren, F., Pearson, A. and Ford, T. (2022), Time trends in autism diagnosis over 20 years: a UK population-based cohort study. J Child Psychol Psychiatr, 63: 674-682. https://doi.org/10.1111/jcpp.13505
