New to autism?

Autism was first described clinically in 1943 by Leo Kanner, based on a group that was almost entirely boys. For the following decades, the research base and the diagnostic tools were built on male samples. The result is a clinical picture of autism that fits men and boys far better than it fits women and girls, and a long pattern of women being missed, misdiagnosed, and told there is nothing wrong with them.

Masking and social camouflage

Girls tend to be more socially motivated than boys on average, and from a young age many autistic girls put significant effort into figuring out how to fit in. They watch other girls closely, copy mannerisms and phrases, learn the unwritten rules of their friendship group, and quietly rehearse conversations in their heads before having them.

From the outside, this can look like social competence. It often is not. It is effortful cognitive and emotional work, done constantly and largely invisibly.

Research by Bargiela, Steward and Mandy at University College London (2016) interviewed women who had received a late autism diagnosis and found that most had been masking extensively throughout childhood and adult life, often without realising it. Many described recognising for the first time that what they had always thought of as being anxious or socially awkward was actually a carefully constructed performance they had been running for decades. (Bargiela S, Steward R, Mandy W. The experiences of late-diagnosed women with autism spectrum conditions. Journal of Autism and Developmental Disorders, 2016.)

A study by Hull and colleagues (2017) found that camouflaging was significantly more prevalent in autistic women than autistic men, and was strongly associated with anxiety, depression, and poorer quality of life. The effort of keeping the mask in place does real damage over time. (Hull L, Petrides KV, Allison C, et al. Putting on my best normal: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 2017.)

The problem with "high functioning"

You may have come across autism described as "high functioning" or "low functioning." These labels are now widely criticised, including by most autistic people and an increasing number of clinicians, because they describe how someone appears rather than what they actually need.

For women and girls especially, "high functioning" is often used to mean someone who appears to be coping. What it can miss is that they are coping at enormous cost, and that their support needs are real even if they are hidden. A woman who holds down a job, maintains friendships, and manages daily life can absolutely be autistic. She may be doing all of that through exhausting performance rather than ease, and the gap between how she appears and how she feels is often very wide.

The SIGN 145 guideline (the Scottish clinical guideline for autism assessment) notes that autism in women and girls is frequently underrecognised and that presentation may not match the classic descriptions that clinicians have been trained on.

Misdiagnosis

Autistic women are significantly more likely than autistic men to have received diagnoses of anxiety, depression, eating disorders, or borderline personality disorder before an autism diagnosis is made. These conditions may genuinely also be present. But when autism is the underlying cause and is not identified, treatment aimed only at the surface conditions often does not work as expected.

If you are a woman who has received diagnoses that have not quite explained your experience, or treatments that have not done what they were supposed to, it is worth exploring whether autism might be part of the picture.

Burnout

Autistic burnout is a period of profound exhaustion, withdrawal, and loss of function that can follow sustained periods of masking and overstretching. It is not the same as depression, though it can look similar from the outside. It often arrives after a major life change, a period of intense demand, or simply years of accumulated effort finally exceeding what a person can sustain.

For many women, burnout is what finally triggers the recognition that something has always been different. A late autism diagnosis frequently follows.

Autism assessment varies considerably between providers. Knowing which tools a good assessment uses helps you ask the right questions before you book.

ADOS-2 (Autism Diagnostic Observation Schedule, Second Edition) — the international gold-standard observational assessment for autism. A trained clinician works through structured activities and conversation while observing communication, social interaction, and behaviour. It takes around 40 to 60 minutes and requires specific training to administer. Not every private provider uses it, but it is the most widely validated tool available.

ADI-R (Autism Diagnostic Interview, Revised) — a structured interview usually conducted with a parent or someone who knew the person well in childhood. It covers early development, language, social behaviour, and repetitive patterns. Often used alongside ADOS-2 for a fuller picture.

DISCO (Diagnostic Interview for Social and Communication Disorders) — a more narrative-style interview developed in the UK, which builds a broader picture of a person's developmental history and current functioning. Used by some providers, particularly for adults.

AQ and RAADS-R — questionnaire-based screening tools that you complete yourself. These are useful for identifying whether assessment is warranted, but they are not diagnostic on their own. A responsible provider should use them as part of a broader assessment, not as the whole thing.

The Scottish clinical guideline (SIGN 145) recommends that assessment draws on multiple sources of information across different settings. An assessment that relies only on a single questionnaire or a brief self-report interview is not in line with best practice.

Preparation is worth doing. The assessment itself can feel pressured, and having thought things through in advance means you are better placed to give the clinician an accurate picture.

Think about childhood. Autism has to have been present from early in development, even if it was not obvious. Think back to how you were as a child: did you find group play confusing, prefer to stick to specific rules, find unstructured social time exhausting? Were there strong interests that others found unusual? Did you find change harder than other children seemed to?

Think about what you mask. Many adults, particularly women, have been masking for so long that they can find it hard to describe their autism outside the assessment room. It can help to think about what you do privately versus publicly, what exhausts you, and what you do to prepare for social situations that others seem to do automatically.

Ask for developmental information. If a parent, sibling, or other relative can recall details of your early childhood, particularly around language development, social play, and how you were described by teachers, this is genuinely useful. Some assessments include a collateral interview specifically for this.

Consider your sensory needs on the day. Assessment environments can be clinical and unfamiliar. If you have sensory sensitivities, it is fine to let the provider know in advance, ask about the environment, and bring anything that helps you regulate.

Write down your questions. Assessments can move quickly and it is easy to forget things. A short list of questions gives you something to refer to and makes it less likely you will leave feeling like you did not say what you wanted to say.