Signs of Autism in Women

The signs of autism in women are often misunderstood, meaning that many autistic women remain undiagnosed or are misdiagnosed.

In this article, Jo Condon, an expert in autism presentation in females, provides a complete list of the signs of autism in women, discusses the reasons for the lack of recognition of female autism traits and outlines how women can access an autism assessment.

5 key signs of autism in women

Every autistic person presents differently and experiences different strengths and challenges. However, there are commonalities in the way in which autism impacts an individual. If you relate to these characteristics, you should consider undertaking further screening for autism. The key signs  include:

• Feeling like an actor in your own life: You may struggle to know who you really are, feel like you are ‘putting on a show’ around others, avoid sharing your views or opinions or find yourself behaving in the same way as others around you to fit in
• Experiencing periods of fatigue or exhaustion: Do you feel tired, wiped out or burnt out a lot of the time? Many autistic women experience significant exhaustion or burnout following periods of social interaction, such as at the end of the work day or after a family event
• Rehearsing, practising or replaying conversations in your head: Anxiety or uncertainty around social expectations can mean that autistic women will plan and rehearse conversations in their head before executing them. You may also find that you replay conversations in your head after having them, trying to work out if you said the right thing or how you came across to others
• Feeling out of sorts when things do not go to plan: Do you struggle when things are not done your way? Or when people or events do not run on time or go as planned? Last-minute changes, spontaneous events or unpredictable situations can make autistic women feel anxious, irritated or annoyed
• Difficulties with sensory input: Difficulties with sensory input can have a significant impact on autistic women. Struggling with the sound of people eating, noisy environments, the sensation of certain textures or specific smells can be an indication that you are experiencing the sensory differences associated with autism

Why is autism in women missed?

Many factors contribute to the underdiagnosis of women and girls. Historical understanding of autism as a male-dominant condition, previous diagnostic criteria, masking and camouflaging behaviours not being well understood, alongside gender inequality issues such as societal gender expectations and gender bias in health and care systems, have all contributed to a lack of acknowledgement of autism in the female population.

Male autism presentation

Autism was historically viewed as primarily affecting males, and so the characteristics of autism that became more widely recognised were those that tended to be typically seen in males. It is thought that males are less socially motivated and therefore present with the more stereotypical characteristics of:

• Decreased social interest
• Poor eye contact
• Intense, focused interests that occupy time and conversations
• Stimming and mannerisms

Whilst females may also present with these characteristics, they are more likely to hide them, making autism less visible to others. Contact with the more stereotypical autism presentation can also influence front-line professionals, such as teachers, who may associate autism with a particular presentation and not recognise the broader autism spectrum. Myths such as ‘people with autism don’t give eye contact’ or ‘autistic people don’t have empathy’ also lead people to dismiss possible autism.

Changes to the diagnostic criteria for autism

In 2013, the 5^th edition of the Diagnostic and Statistical Manual (the DSM-5) was published. There were significant changes to the way in which autism is diagnosed, and the diagnostic term ‘autism spectrum disorder’ was included for the first time. The changes to the diagnostic criteria included sensory differences as part of the diagnostic criteria and the concept that symptoms could present in later life. The changes meant that some people who were assessed previously and found not to meet the criteria for an autism diagnosis do meet the criteria for a diagnosis of autism spectrum disorder.

Masking and camouflaging

Autistic females are thought to be more socially driven and are therefore more inclined to try to hide their differences, engaging in behaviours that ‘mask’ or ‘camouflage’ their autistic traits.

From an early age, autistic females learn to navigate social situations by hiding their differences or difficulties. Younger girls mask their problems in various ways, including avoiding interaction, relying on others to respond for them, or watching others and copying their behaviours. They may suppress other behaviours, for example, by hiding their hands when engaged in repetitive movements. Girls often learn ‘accepted’ social behaviours from studying siblings, friends or characters on television.

As girls grow older, they have usually learned a range of behaviours that help them to ‘fit in’ socially, but using their cognitive abilities to manage social interactions comes at the price of being completely exhausted after interaction. By the time adulthood is reached, many women who have masked throughout childhood and adolescence find it difficult to unmask and to understand who they really are.

Gender expectations and gender bias

Societal expectations of females undoubtedly influence masking and camouflaging behaviours, causing autistic women to hide their true selves to conform to the way society expects them to behave.

Gender bias also influences the way women are perceived in education, work and by healthcare professionals. Females are more likely to experience feeling dismissed by healthcare providers or to have their difficulties attributed to being unable to cope with stress or being emotional. This means that many women presenting with autism characteristics are diagnosed with emotional disorders such as anxiety.

Autism characteristics can also cause more difficulties at times of life changes, such as the move to secondary school or when parents become older and a woman needs to become a caregiver for them. The difficulties experienced by females are, this time are dismissed as ‘hormonal’ due to puberty or peri menopause, and the underlying autism is missed.

Misdiagnosis

Misdiagnosis is a common experience for autistic females. The social worries associated with autism in females, alongside difficulties with sensory processing and feeling uncomfortable with changes in routine or unpredictability, cause stress and anxiety. When females present for help or support with their issues, the underlying pattern of behaviours is often missed, and a diagnosis of an anxiety-based disorder or depression is given. Undiagnosed autistic females often feel frustrated by medication or talking therapies not making a difference.

When an autistic female has masked for years, they can struggle with knowing who they are. This, alongside having difficulties regulating emotions and difficulties with relationships, is sometimes interpreted by mental health professionals as being symptoms of a personality disorder, another misdiagnosis often issued to undiagnosed autistic women.

Women who have been misdiagnosed are usually aware that the diagnosis is incorrect on some level, feeling that they cannot relate to the literature about the diagnosis and that the advice about managing symptoms does not apply to them.

Complete list of female autism traits

At the beginning of this article, we considered the 5 key signs of autism in women. Here, we expand further to consider all of the traits or characteristics that autistic women may experience.

Social interaction

• Struggling with small talk: Find it difficult to engage in social chit chat, rehearsing conversations, using set scripts or practised responses to get through short conversations
• Finding group interaction difficult: Having difficulties with interacting in groups of more than 2 or 3 people, finding it hard to keep track of the conversation, to know when it is your turn to speak or to try and work out what others in the group expect of you
• Unintentionally offending others: Finding it hard to understand why others find what you say as blunt or rude, assuming people want advice when they don’t, tending to pick up when people are incorrect in what they do or say
• Worrying about how others perceive you: Replaying conversations in your mind, frequently picking up when something is ‘off’ in an interaction or relationship, but not being able to pinpoint it, struggling to judge what other people are thinking about what you do or say, not wanting others to misjudge you or single you out
• Not finding things funny: Not sharing others’ humour, not recognising when someone is joking, not understanding the point of sarcasm, laughing because others are rather than because you find something funny
• Copying others’ behaviours: Using phrases, expressions or gestures that others use to try to fit in
• Finding eye contact uncomfortable or not instinctual: Finding it difficult to make or maintain eye contact with others, needing to remind yourself to make eye contact with people, struggling to follow a conversation when making eye contact
• Smiling: Smiling to give the impression that all is well to other people
• Avoiding talking about your interests: Not sharing your interests with others, as you are aware that others do not share your interests or find you too intense when you share them

Friendships and relationships

• Struggling to cope with more than one or two friendships
• Taking a passive role in friendship, with the other person leading contact and organising meet-ups
• Struggling to work out how often to contact friends
• Lack of interest in, or need for, friendships
• Never sharing your thoughts or feelings with a friend, not feeling the benefit of sharing problems with others
• Having to know someone for a very long time before developing a friendship

Routines and difficulties with changes

• Daily routines: Having your own daily routines that you must follow to feel regulated and calm
• Irritation when others don’t do things your way: Having certain ways of doing things, whether making tea, loading the dishwasher or tackling work issues and feeling irritated when others do not do things in the same way
• Anxiety or irritability when things do not go to plan: Finding it difficult when people do not turn up on time, events start late, or the planned outcome is not achieved
• Difficulty with changes: Liking sameness and familiarity, finding it hard when plans change without notice, needing time to prepare for something that is out of the ordinary. New staff, new environments, or new systems can be difficult to adjust to. Life transitions cause significant distress
• Need for predictability: Needing to know when and how things will happen, must plan events, travel routes or non-routine activities or visit places before the event happens

Knowledge and interests

• Intense interests: Having hobbies or interests that you pursue intensely, take up your spare time and make you feel calm and focused
• Fact-finding: Needing to find out all there is to know about a topic, subject of interest, through research and fact-finding. Becoming distracted by your need for knowledge about the subject
• Collecting and ordering: Enjoying collecting items or objects, liking to organise and order, enjoying looking at your collectables or organisation systems

Repetitive movements

• Rocking or pacing when alone and upset, anxious or excited
• Moving your hands or fingers in sequenced ways, finding yourself calmed by twirling your rings, tapping your fingers or squeezing a fidget toy
• Finding yourself tapping your legs or feet without realising
• Picking your skin or cracking your knuckles habitually

Sensory differences

• Irritation at ‘people noises’: feeling irritated or annoyed by the sound of people eating, breathing, coughing, chewing or tapping
• Hearing things others do not: The noise of lights, toasters, modems, etc, bothers you but does not seem to bother others
• Overwhelmed by louder noises: Finding loud noises, specific noises or noisy environments difficult to cope with
• Limited diet: Fussy with food, disliking certain tastes and textures. Preferring to eat the same familiar foods
• Sensitive to specific textures: Disliking the textures of certain clothing fabrics, the feel of specific textures, such as velvet or sand
• Comforted by certain textures or pressure: Finding heavy, soft or fluffy items over you to be comforting
• Not liking being touched by others: Can only tolerate physical contact on your own terms
• Difficulties filtering sensory information: You find it hard to filter out others’ conversations or background noises

Emotional overwhelm

• Finding it difficult to regulate your emotions: Feeling overwhelming anger, anxiety or upset over things that others find trivial
• Feeling joy infrequently: Happiness feels like an absence of worry rather than joy or uplift in mood
• Fatigue and exhaustion: Feeling burnt out after periods of interaction, sleeping more than is expected or experiencing cyclical periods of chronic burnout
• Strong sense of justice: Feel angry or annoyed when you perceive others to treat people or animals unfairly, when others do not follow the rules or when people misunderstand you
• Sleep difficulties: Finding it difficult to switch off from your thoughts at night time

Self-identity and self-esteem

• Lifelong experience of feeling different
• Feeling like others cannot relate to or understand you
• Negative self-talk due to struggling with daily tasks that others seem to find easy
• Struggling to understand who you really are due to a lifetime of copying and masking

Difficulties experienced by autistic women in the workplace

Autistic women are usually diligent employees who take pride in doing their jobs effectively and efficiently, often at the cost of their own mental and emotional well-being.

Autistic women find that performing at a high level at work comes at the cost of being unable to function well outside of work due to feelings of exhaustion and overwhelm from the work environment.

Burnout due to work is common and occurs as a result of going above and beyond in one’s role while trying to manage the social and sensory demands of the work environment.

Aspects of the workplace that autistic women commonly find difficult include:

• Co-workers engaging in chit-chat rather than making direct requests
• Being interrupted by colleagues wanting to talk about non-work-related issues
• Rules and procedures that appear to have no purpose, are illogical or are ineffective
• Managers not being specific in their requests or expectations
• Colleagues not completing their roles efficiently, or not taking their roles seriously
• Sensory input from multiple noise sources, bright lights and strong smells

Benefits of an autism diagnosis for women

Undiagnosed autistic women usually have low self-esteem as a result of years of feeling that they do not quite fit in, feeling exhausted by social interaction and being misunderstood by others.

Receiving an autism diagnosis is very empowering and helps women begin to understand themselves and reduce their masking behaviours.

An autism diagnosis also helps others to understand differences and can help family and friends to have better acceptance and understanding.

Workplaces and educational establishments have a legal duty to make reasonable adjustments for those with an autism diagnosis. If you are employed, sharing a diagnosis with your employer can promote discussion around changes needed to make the workplace and your workload more manageable and accepting.

How to access an autism assessment

You can access an autism assessment via the NHS or by choosing the private autism assessment route. If you wish to pursue an NHS assessment, you should talk to your GP in the first instance. Your GP will be able to advise you of the local NHS pathway and the options available to you. Be aware that NHS waiting lists are long and an NHS assessment can take years in some areas.

By choosing a private autism assessment, the waiting times are reduced to as little as two weeks.

Private autism assessment services offer a more personalised approach. From start to finish, your assessment will be coordinated with you, and the team will take your preferences into account. You will feel listened to and will be able to get your queries answered in a timely way.

Contact us today to arrange your assessment or to discuss the signs of autism in women and whether an assessment is the right choice for you.