Autism in Women: Understanding Something That Was Always There

Many autistic women are not identified until adulthood, often after years of other explanations. Autism in women is often recognised later, in part because many women's experiences were not well reflected in the descriptions that shaped earlier understanding of autism. Many autistic women have careers, relationships, children and long friendships, and appear to be managing, whilst privately working considerably harder than anybody realises in order to do so. When recognition finally arrives, it often feels less like discovering something new and more like finally understanding something that was always there.

The Women Who Were Never Looked For

Autism was described, researched and screened for largely through the observation of boys, and for several decades the girls who did not match that picture were understood differently. They were often described as shy, sensitive, anxious or particular, and those descriptions were rarely wrong. Those descriptions were often valid, but they did not always fully explain what was happening.

A woman who was at school in the 1980s or 1990s was considerably less likely to have autism recognised than a girl presenting similarly today. We have written separately about how autism is recognised in girls and about why girls were missed for so long, and much of it applies directly to the women those girls became.

What this means in practice is that a substantial number of women are meeting an accurate description of themselves for the first time in their thirties, forties, fifties and beyond.

Competence As A Form Of Camouflage

One of the more difficult things about recognising autism in adult women is that the evidence often looks like success.

Many autistic women describe having become, through years of practice, extremely good at working out what a situation requires and producing it. At work this might involve rehearsing a contribution before a meeting, scripting a phone call before making it, or borrowing the conversational style of a colleague who seems to find it easy. Socially it might involve knowing that an evening out will cost most of the following day, and quietly arranging life so that the cost can be paid.

The difficulty is that the performance usually works. Colleagues see somebody capable and friends see somebody who turns up, and because nothing visible is going wrong, nobody asks whether appearing fine is difficult. There is rarely an obvious moment at which to raise it.

Some women describe reaching midlife having never once been asked that question. Others describe a period of burnout, often after a change in circumstances, when the effort that had been sustainable for twenty years stopped being sustainable, and the question of why everything had always cost so much became harder to set aside.

The Explanations That Came First

Many women arrive at the question having spent years trying to understand their experiences through other explanations.

Anxiety appears most often, and depression, disordered eating, chronic fatigue, obsessive compulsive difficulties and recurrent burnout all recur in the accounts women give of the decades before recognition. Each of those explanations was usually reasonable at the time it was reached, and each tended to describe something real.

In some cases, however, they may have been describing consequences rather than the underlying explanation for the difficulties being experienced. Sustained social effort, sensory environments that never quite became tolerable and years of uncertainty about why other people seemed to find things easier are conditions under which anxiety and exhaustion make a great deal of sense.

This is one reason recognition in adulthood can be unexpectedly complicated. It rarely replaces the earlier explanations, and many women continue to experience anxiety after recognition, whilst understanding it differently. What often changes is the question underneath. Instead of asking why they have never managed to become less anxious, some women begin asking what their anxiety may have been responding to all along.

Seeing Yourself In Someone Else's Story

A striking number of women describe the same route to the question, which is that it arrived whilst they were thinking about their child.

Sitting in a feedback appointment listening to a clinician describe a child's experiences, some women recognise the description entirely, and not as a parent. The sensory difficulties, the social exhaustion, the need to know what is happening before it happens: the account being given of a child can be an unexpectedly accurate account of the adult listening to it.

This tends to produce a complicated response. Some women describe relief because the pattern finally has a shape. Others describe a sense of loss, reflecting on years spent trying to understand experiences that now make sense in a different way. Recognition in adulthood can sometimes lead people to reflect on how differently their experiences might have been understood at other stages of life.

Some women describe feeling pleased that their child may have access to understanding and support earlier than they did themselves, whilst also reflecting on what their own journey might have looked like had similar understanding been available to them.

Recognition Rarely Feels Like Discovery

People sometimes assume that late recognition arrives as a revelation, and that the experience is one of learning something entirely new about oneself.

What women more often describe is the opposite. The experiences were always there. The exhaustion after social occasions, the clothes chosen by texture rather than appearance, the interests that have quietly organised a life, the sense of working from a translation whilst other people appear to speak the language natively: none of that is new information. What arrives is a framework that connects things which had previously seemed unrelated.

Understanding does not remove the difficulties. A woman who recognises herself as autistic at forty-five will still find the same environments overwhelming the following week. What often changes is the interpretation. Experiences that had been understood as personal shortcomings, and frequently as evidence of not trying hard enough, begin to make more sense in context, and many women describe a considerable easing of self-criticism as that shift takes place.

That, more than any diagnostic outcome, is what most women appear to be looking for when the question first surfaces.

Whether To Take The Question Further

Not everybody who recognises herself in these descriptions wants or needs a formal assessment, and the value of self-understanding does not depend on being certified.

Some women find that reading, reflection and contact with other autistic women give them what they were looking for, and the question settles. Others find that it does not settle, usually because they need the understanding to do something: to secure adjustments at work, to explain themselves to family who have their own account of who they are, or simply to stop revisiting a question they have been returning to for many years.

The right decision tends to depend less on how strongly somebody identifies with the description and more on what the answer would be for.

Where formal understanding would help, an assessment built for adults and alert to a lifetime of camouflaging matters a great deal. Assessments that rest mainly on how somebody presents across a single appointment can miss exactly the women this article describes, because presenting well in unfamiliar situations is frequently the skill they have spent longest developing.

How The Neurodiversity Service Approaches Adult Assessment

Where formal assessment feels helpful, we believe the process should do more than answer a diagnostic question.

Many of the women who come to us have spent years developing ways of navigating situations that they find difficult, often without fully understanding why those situations feel difficult in the first place. Taking time to understand that history matters.

Our assessments are designed to explore not only whether autism provides the best explanation for a person's experiences, but also how those experiences fit together and what that understanding might mean moving forward.

We describe the assessment process in more detail in our guide to What Happens in an Adult Autism Assessment?, and what a private autism assessment costs, along with everything that is included, is published openly. For people who are unsure whether assessment is the right next step, our Initial Support service offers an opportunity to explore concerns, ask questions and consider options with an experienced clinician, with no commitment to pursue assessment afterwards.

Frequently asked questions

This article describes experiences that many autistic women report; it cannot answer the question for an individual, and many of the experiences described can have other explanations. General information, not clinical advice for an individual situation.