What Not Knowing Cost You, Measured

Quick Answer

There is a number for what not knowing costs, and it comes from the largest survey of autistic people’s menopause experiences in existence.

Of 508 autistic adults across 24 countries, 54 percent did not know they were autistic when menopause began. That group rated their menopause 70.49 out of 100 for difficulty. The group who did know rated it 62.28. Eight points, on a scale where 100 is extremely difficult, with a statistically significant difference behind it.

The finding sits in an open-access paper published in 2024. Nobody has built anything on it.

You worked out what was happening at 51, and the arithmetic started immediately

It arrives with the relief. Some version of: if I had known at 30, what would have been different. If I had known before the divorce, before the job that ended badly, before the decade of being told to try harder.

That arithmetic is usually treated as something to move past. It is also the one part of this that has a number attached.

The study

Jenkins and colleagues surveyed 508 autistic adults in 24 countries about menopause. Participants rated how difficult they found it on a scale from 0, not difficult at all, to 100, extremely difficult.

270 of them, 54 percent, had not known they were autistic when it started. 228 had.

F(1, 474) = 13.12, p < .001. In plain terms, a gap that size in a sample that size does not turn up by chance.

Both numbers are high. Neither group described an easy time. What separates them is roughly eight points of difficulty on the hardest physical transition many of them will go through, and the only thing that distinguishes the two groups is whether anyone had told them what they were.

The sample inside the sample

116 of the 508 reported ADHD or ADD alongside autism. That is 22.8 percent, and it makes this the largest group of AuDHD adults in midlife assembled anywhere.

It has never been analysed as an AuDHD cohort. The paper reports it as a co-occurring condition in the demographics table and moves on, which is standard practice and also means the most relevant sample in the field is sitting unexamined inside a survey about something else.

What this is not, before you use it

This is an association in a cross-sectional survey. It does not establish that learning you are autistic makes menopause easier.

The two groups may differ in other ways. People who were diagnosed earlier in life differ systematically from people who were not, in support received, in co-occurring conditions, and in what led anyone to assess them in the first place. Any of those could carry part of the eight points.

The difficulty rating is self-reported and retrospective. It measures how hard people say it was, which is the relevant question here and is not the same as a clinical measure of symptom burden.

Quote it as what it is. Autistic adults who did not know they were autistic rated their menopause harder than those who did, in the largest survey available. That version survives anyone checking it. Stretched into a claim that diagnosis treats menopause, it does not.

What knowing appears to change

The Jenkins number says there is a difference. A separate study says something about the shape of it.

Holden and Kobayashi-Wood surveyed 28 UK women diagnosed with ADHD after the age of 15, ages 19 to 72. The pattern before diagnosis was consistent: 82 percent had been dismissed by a medical professional, with symptoms attributed to anxiety, depression or hormones. 96 percent said the delay affected their mental wellbeing.

After diagnosis, 86 percent reported an improved sense of self.

Nothing in their bodies changed on the day of the assessment. What changed was the explanation available for the previous thirty years, and what could be asked for going forward.

The part of it that is grief

In the same study, 93 percent described thinking about lost potential, and 86 percent had reflected on how life might have gone with an earlier diagnosis.

That is the near-universal response, and it tends to be treated as a phase to get through rather than a reasonable reaction to accurate information. Someone arriving at a correct explanation at 51 is holding two things at once: an account of their life that finally works, and a clear view of what a different account would have made possible.

Both are true. The second one does not cancel the first, and it does not need to resolve on any particular timetable.

What the number is useful for

Three situations, and it does a different job in each.

Deciding whether an assessment is worth it at 47, or 58. The common objection is that it is too late to matter. The survey data is the counter-argument: within a population already in or past menopause, the people who knew reported an easier time of it. Late still separated from never.

Explaining to someone why this is not a self-indulgence. An eight-point difference on a validated difficulty scale in a 508-person international sample is a different kind of statement than describing how it feels to finally understand yourself.

Sitting with the arithmetic. The years without an explanation were harder, and there is now a measurement showing they were harder for a reason that was never about effort.

What it does not answer

Whether the same gap exists for ADHD. Nobody has run this analysis on a late-diagnosed ADHD sample, and the Jenkins survey was designed around autism.

Whether the gap holds for AuDHD specifically. The 116 people who could answer that are in the dataset already.

Whether knowing earlier would have moved anything, for any individual person. The study describes two groups. It does not describe a life.

When the answer is that you are too old for this to be worth doing

It comes in a few forms. You have managed this long. A diagnosis would not change anything at your age. There is a waiting list and it should go to someone younger.

Three lines that answer it, in the language the objection was made in.

The last clause is the one that changes the temperature of the room. It makes a refusal something that has to be written down rather than gestured at.

Sources

• Jenkins CA, Moseley RL, Matthews RJ, et al. (2024). Struggling for years: an international survey on autistic experiences of menopause. Neurodiversity 2:1. Open access.
• Holden E, Kobayashi-Wood H (2025). Adverse experiences of women with undiagnosed ADHD and the invaluable role of diagnosis. Scientific Reports 15:20945.
• Brady MJ, Jenkins CA, Gamble-Turner JM, et al. (2024). A perfect storm: autistic experiences of menopause and midlife. Autism 28(6):1405.
• Attoe DE, Climie EA (2023). Miss. Diagnosis: a systematic review of ADHD in adult women. Journal of Attention Disorders 27(7):645.
• Young S, Adamo N, Ásgeirsdóttir BB, et al. (2020). Females with ADHD: an expert consensus statement. BMC Psychiatry 20:404.

The bottom line

Not knowing was not neutral. It has been measured once, in 508 people, and it came out at roughly eight points of difficulty on a hundred-point scale.

You are not broken. You are not too much. You are smart and capable, and you can do anything with the right tools.