Why Autism and ADHD Are Recognized Late in Women

I got my diagnosis at 23. Until that day the sentences said about me were always from the same family: dreamy, a daydreamer, disorganized, not using her potential. None of them was the name of a diagnosis. All of them were comments on character.

This is a familiar form of story for women, for both ADHD and autism. The research in both fields has asked the same question over the past decade: are these conditions really seen less in women, or are they noticed less?

I do not have an autism diagnosis, and I will not give one to myself. Below I write the ADHD side in my own voice and the autism side based on research.

The tilt in the numbers

In both conditions diagnosis rates tilt toward men. The debate turns on how much of this tilt is a real difference and how much is not being noticed.

The review by Lai and colleagues (2015) argues that the reported sex ratio in autism is more tilted in clinical samples than in population-based studies; that is, some of the girls never reach the clinic at all.

On the ADHD side the expert consensus statement by Young and colleagues (2020) speaks more directly: the failure to recognize and refer ADHD in girls and women explains at least part of the difference in rates.

The two fields have reached the same conclusion independently of each other.

Whom the criteria were written from

This is the structural part of the story.

The early descriptions of both conditions were made largely from boys. The child who came to mind in ADHD was the one who could not stay in line, who disrupted the class, who was always moving. The child who came to mind in autism was the one who memorized train timetables and did not make eye contact.

A child who falls outside these descriptions goes unnoticed. A girl who sits quietly, looks out of the window, doodles in her notebook and gets by without listening to the lesson does not enter anyone's agenda, because she bothers nobody.

I was exactly that kind of child. My grades were good, I bothered nobody and no teacher noticed anything. This form of ADHD is called inattentive ADHD, and that is exactly why it goes unnoticed.

Something needs to be added here: the referral mechanism is a large part of the problem. In childhood the person who sends a child for evaluation is usually the teacher, and what catches the teacher's attention is mostly behavior that disrupts the order of the class. A quiet child, however much she is struggling, does not pass through that door. The text by Young and colleagues (2020) draws attention to exactly this tendency in referral.

There is also the matter of achievement. Nobody asks questions about a child with good grades. Yet a good grade says nothing about how that grade was earned: an assignment written in one go over a night and an assignment spread over three weeks put the same letter on the report card.

Masking: a measurable difference

Here the research says something concrete.

Hull and colleagues (2020) developed a scale measuring camouflaging behavior and applied it to autistic and non-autistic adults. Autistic women reported markedly higher camouflaging scores than autistic men. Among non-autistic participants no such difference between women and men appeared.

So the difference is not a general sex difference. It is a difference that appears in the group with an autism diagnosis.

This finding has two consequences. First, women camouflage the clinical picture better, and this contributes directly to the delay in diagnosis. Second, camouflaging itself produces a cost; I come to that in the next section.

The same pattern is described on the ADHD side: restlessness is not shown outwardly, it stays inside. I wrote about its adult form in the article on hyperactivity and inner restlessness in adults.

How symptoms look in women

I am writing this section not as a diagnostic criterion but as a list of where to look. None of them shows anything on its own.

Commonly described on the ADHD side: dreaminess and daydreaming, trying to be overly organized and still not keeping up, over-preparing to hide disorganization, chronic fatigue, an inner restlessness that works constantly in the background, being buried under the load of the household. I covered this last one separately in the article on women with ADHD and the load of the home.

Reported on the autism side: interests whose content looks more "socially acceptable," for example people, literature, animals, particular TV series, so that the intensity goes unnoticed. Learning social rules by observing and imitating, and carrying them like something memorized. Friendships that are deep but few. And the picture becoming visible in adolescence, when social rules grow more complicated.

Lai and colleagues (2015) argue that this difference in presentation leads the criteria to work less sensitively in women.

Hormones and life stages

This topic has been studied more on the ADHD side.

The consensus statement by Young and colleagues (2020) points out that ADHD symptoms can change with hormonal fluctuations across the lifespan, and that adolescence, the postpartum period and the menopausal transition can be especially challenging. This partly explains why it is so common for women to say "everything suddenly fell apart" in certain periods.

I wrote about this side in detail in the article on ADHD, hormones and the menstrual cycle.

The diagnoses that step in between

This is the most expensive consequence of a late diagnosis.

A picture that goes unnoticed for years does not stay in a vacuum. Other explanations step into its place: an anxiety disorder, depression, burnout, sometimes an eating disorder. These diagnoses are often not wrong; they really are there. What is missing is the question of why they are there.

Young and colleagues (2020) note that ADHD in women is often confused with other diagnoses or lies beneath them. A similar pattern is described on the autism side.

The practical result is this: if you have a long history of anxiety or depression and the treatments are not working as expected, this is not a diagnosis on its own but it is a sign that deserves a look.

At this point there is a common objection: "But I really am anxious." That is true, and the two do not exclude each other. The question is not whether the anxiety is there; it is whether the anxiety itself is a result. A state of being on alert that comes from years of forgetting, of not keeping up and of pulling things together at the last minute looks very much like the anxiety in the textbook. Telling the difference apart is a specialist's job, but knowing which question to ask is useful to you.

The real bill of a late diagnosis is not the delay of the diagnosis. It is the delay of the sentences you built about yourself during those years.

The cost of masking

The finding by Hull and colleagues (2020) describes not a convenience but a burden.

Masking is not free. Constant calculating, constant monitoring, constant adjusting. Its reported results are exhaustion, identity blurring and mental health problems.

The sentence most familiar to me is this: I'm fine in company, and when I get home I fall apart. This is described in the same words in both autism research and ADHD research. I wrote about it in detail in the articles on masking in autism and ADHD and what masking is in ADHD.

In women another layer is stacked on top of this burden. Most of the housework, remembering, organizing and managing relationships is already placed on women, and all of this work depends on executive functions. So the most work is expected in the area where the most difficulty is felt. Carrying it successfully is possible too, but the price is spending the whole of your capacity.

Going to an evaluation

The process has a few particular difficulties for women, so I am writing it concretely.

• Don't try to prove you are coping well. Showing your best self in the room pushes the diagnosis away. Describe what you do and at what price.
• Describe the cost, not the results. Your grades were good, your job runs, your home stands. These hide the picture. What needs describing is the price you pay to keep them standing.
• Write down what you avoid. The things you chose not to do carry information just as much as the things you could not do.
• Gather childhood information. Report cards and teacher comments are especially useful. "Well-behaved but dreamy" is a clinically meaningful sentence.
• Ask about overshadowing. If you already have another diagnosis, ask openly whether new symptoms are being attributed to it.

I described the general framework of the process in the articles on how autism is diagnosed in adulthood and how adult ADHD is diagnosed.

What a late diagnosis changes

A diagnosis does not bring the past back. But it changes two things.

First, the explanation changes. Another sentence takes the place of "I'm lazy," and because this sentence is more accurate it works better. I wrote about this break in the article on the lifelong course of ADHD in women.

Second, the decisions change. A routine built on the right framework holds; one built on the wrong framework does not. This is why I spent years trying methods that did not suit me and blaming myself.

A third thing changes as well: the order of the story you tell yourself. The narrative of failure accumulated until the age of thirty can be reread with a new framework. This backward reading is sometimes soothing and sometimes enraging, and both are normal. The anger often does not have a target either; the target is only the time that has passed.

I covered the picture in which the two can coexist, and how it looks, in the article on AuDHD. And let me write this again: recognizing something in yourself is not a diagnosis. An evaluation is a specialist's job, and this article is a map that takes you as far as that door, not what lies beyond it.