Valérie-Anne O'Callaghan
I recently received a diagnosis of autism spectrum disorder with high abilities, after turning fifty. I had suspected it for years, and yet I still took a long time to seek help.
I'm writing this because mine is a common case. Literature describes the journey quite accurately, and acknowledging it in writing saves other people part of the journey.
The numbers
The ratio of diagnoses is estimated to be around three men for every woman. Loomes, Hull, and Mandy (2017) systematically reviewed prevalence studies and concluded that the actual ratio is probably closer to 3:1 than the classic 4:1, with one additional finding: studies that actively seek cases in the general population find more balanced ratios than those based on existing diagnoses.
That difference between what they are looking for and what they find in the consultation perfectly describes the problem. Autistic women are there. It's just that they are less likely to identify with it.
Milner and colleagues (2024) analyzed in Autism Research The relationship between gender, camouflage, and age of diagnosis was examined in two samples of autistic adults. Women received a diagnosis later than men, even when controlling for age, autistic traits, and IQ. A higher level of camouflage was associated with a later diagnosis in all groups.
Why does it take so long?
Several reasons that add up.
The criteria were built on children. The foundational descriptions of autism were based primarily on males, and diagnostic tools were validated on that basis. A profile that deviates from that pattern is less accurately captured by the tools.
The masking works. Cage and Troxell-Whitman (2019) documented that autistic women more frequently report conventional reasons for camouflaging themselves, such as functioning in work or formal settings. Someone who camouflages effectively does not appear autistic in a forty-minute consultation.
Intense interests go unnoticed. An all-consuming interest in horses, literature, or psychology doesn't raise any red flags. One in train schedules does. The trait is the same, and only one of the two is noticeable to the trained eye.
Other diagnoses arrive first. This is the best-documented pattern: anxiety, depression, eating disorders, borderline personality disorder, fibromyalgia, chronic fatigue. A study of 253 autistic adults found that women more frequently received prior psychological diagnoses before their autism was identified. Each of these diagnoses describes something real, but none explains the whole picture.
High capacities are a barrier. Someone with high cognitive resources compensates better and for longer. Difficulties become apparent later, often only when the system becomes exhausted.
How it usually arrives
The most common path involves another person. A son, a daughter, sometimes a nephew. Someone receives a diagnosis, the mother researches it to understand it, and in what she reads she begins to recognize herself.
That was my experience. When my third child was diagnosed on the spectrum, I began studying neuroscience to understand what was happening to him. I was looking for information about him and found descriptions from my own life story.
The other common path is burnout. Adaptation ceases to be sustainable, often after motherhood, a job change, or an accumulation of stress, and in the attempt to understand what has happened, an explanation emerges that fits better than the previous ones.
What changes next
Less than feared and more than it seems.
A frame. Research on recovery from autistic burnout consistently indicates that having the concept changes one's relationship with their own experience. Decades of interpreting their difficulties as character flaws are redefined when another explanation emerges.
Decision criteria. Knowing that a particular environment costs three times as much allows you to make informed choices. What to accept, what to reject, how much social life to maintain, where to allocate your rest. It ceases to be a matter of willpower and becomes the management of a known resource.
Permission. This is the part that surprised me the most. Being able to say that a place is too noisy, without needing a valid justification. Leaving a meeting without making up an excuse.
And a duel. Because of the time spent demanding things that weren't right. That part also exists and deserves its due.
What doesn't change
It's worth saying, because online discourse tends towards enthusiasm.
The diagnosis doesn't eliminate the difficulties. It explains them. A sensory-demanding environment remains so, and social interactions still require the same effort they always did.
Nor does it rewrite one's biography overnight. Rereading one's life in light of new information takes time, and brings back memories that are understood differently. That process brings uncomfortable moments.
And not everyone needs a formal diagnosis. For some people, recognition is enough. For others, the document opens doors: workplace accommodations, family understanding, access to support services. The decision depends on what is needed, not on an obligation to confirm everything.
For anyone who is at that point
If you're reading this with suspicion lingering, two things.
First: suspicion usually comes from somewhere. Very few people come here out of curiosity.
Second: there's no need to resolve it tomorrow. Do your research, read descriptions written by autistic adults, and observe your own functioning without rushing to conclusions. The diagnosis, if sought, will come when it makes sense to look for it.
And if it does eventually arrive, it will probably bring less revolution and more relief than you expect.
Sources and references
Cage, E., and Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 49(5), 1899-1911.
Hull, L., Petrides, K.V., & Mandy, W. (2020). The female autism phenotype and camouflaging: a narrative review. Review Journal of Autism and Developmental Disorders, 7, 306-317.
Loomes, R., Hull, L., & Mandy, W.P.L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466-474.
Milner, V., et al. (2024). Does camouflaging predict age at autism diagnosis? A comparison of autistic men and women. Autism Research.
Raymaker, D.M., et al. (2020). Defining autistic burnout. Autism in Adulthood, 2(2), 132-143. Portland State University.