A spotlight on women and girls in the autism community
As we approach International Women’s Day, there’s no better time for us all to reflect on the diverse and often overlooked experiences of women and girls in the autism community.
Often minimised and misunderstood by others, including people within the community, these women and their achievements should be recognised and celebrated, not just on International Women’s Day, but every day of the year.
In this post, we’ll explore key experiences associated with different groups of girls and women in the autism community. We’ll share how autism can present in women and girls, common experiences at different life stages and the support options available to girls and women on the autism spectrum and their mothers, sisters and female carers.
- A note on autism and gender
- Autistic girls
- Teens and young adults
- Autistic women
- Mothers, siblings and female carers
A note on autism and gender
In many cases, the presentation of autism in girls can be different to that of boys for a variety of different reasons. However, gender as a concept is incredibly diverse, and everyone identifies with and expresses gender in different ways, even subconsciously. Similarly, autism is a spectrum which encompasses a very diverse range of strengths, abilities, experiences and support needs.
It's important, therefore, to recognise that every autistic person is an individual, and that their gender doesn’t dictate how their autism presents. Although there are some signs and experiences that have been observed in a lot of autistic girls, that doesn’t mean every autistic girl or woman will share that experience. By recognising autistic people as individuals and avoiding assumptions based on their gender or other characteristics, we can ensure they are well understood and receive the support they need and deserve.
Autistic girls
Although there are girls with autism who receive their diagnosis as children, it’s true that many girls aren’t diagnosed until their teenage or even adult years. There are a variety of reasons for this disparity in diagnoses:
Lack of understanding
Throughout history, autism research has involved significantly more boys than girls, meaning that our understanding of autism can be skewed. As the signs of autism can often present differently in girls, or to different degrees, clinicians, educators and people in the community can often mistake autism in girls for another condition or miss it completely.
Masking or camouflaging
In the context of autism, ‘masking’ or ‘camouflaging’ refers to mimicking neurotypical traits and behaviours to fit in more easily. Girls with autism often feel more pressure to do this to find social acceptance and belonging and can become very effective at it, therefore concealing their autism to others.
Often, it’s when girls struggle to continue masking that they or their loved ones might start considering an autism assessment. A girl might not even be aware that she’s masking, or how much she is doing it, which can further delay an assessment and subsequent diagnosis.
It’s important to note that masking comes at an enormous cost to an autistic individual’s sense of self and mental health, even when an individual isn’t aware that they’re doing it. Although it can protect individuals from being singled out for being ‘different,’ appearing as if they aren’t struggling or have assimilated into school or social settings prevents autistic individuals from accessing the support they need.
Stereotypes
Similar to a lack of understanding, the stereotypes and misinformation surrounding autism can make it harder for girls to be diagnosed. Just because a girl’s special interests are dolls or fictional characters rather than those typically associated with autism (e.g., trains), that doesn’t make her any less autistic!
Despite these barriers, our understanding of autism in girls is growing, and autistic girls and their families should expect to receive high-quality support irrespective of gender.
Signs of autism in girls
Although the signs of autism aren’t gender-specific, they can sometimes present differently in girls. Here are some ways autism can present in girls:
- Enjoys arranging and organising objects
- Average or well-developed social and language skills
- ‘Mimics’ or imitates others in social situations in order to blend in
- Less likely to have restricted or repetitive behaviours, or better at masking these from others
- More likely to discuss their feelings and have less physical behavioural issues
- Intense interest or hyper-fixation on animals, music, art or literature or other more ‘socially acceptable’ topics
- Dislikes playing cooperatively with female peers (e.g., wanting to dictate the rules of play or preferring to play alone to maintain control)
- A strong imagination used as a coping mechanism (e.g., escaping into nature or fictional worlds)
- The ability to hold their emotions in check at school or in public but is prone to meltdowns and explosive behaviour at home
- Strong sensory sensitivities, particularly to sounds and touch (e.g., clothing tags, clothes made of certain fabrics)
- More likely to ‘mask’ or suppress their autistic traits
If you believe your child or a girl you know is demonstrating these signs, you might wish to seek an autism assessment.
Teens and young adults
The teenage years can bring enormous challenges for all children and their families, particularly for teenagers and young adults on the autism spectrum. From sensory and emotional challenges triggered by puberty to deciding what to do after school, this is a period of enormous change and self-discovery.
It’s often in the teenage years that autistic girls who have gone undiagnosed or misdiagnosed begin to struggle. This is because they are not receiving the support they require and might not understand why they find certain things so uncomfortable or difficult. The teenage years are also crucial for self-discovery, and lacking key awareness about yourself can make the process of learning who you are and forming your identity incredibly challenging.
The way autism presents is often different for older children and teenagers in comparison to young children. Here are some common signs of autism in teenagers:
- Talking too much or too little, with their speech dominated by their favourite topics
- Talking with an monotonous tone and using unusual expressions
- Talking ‘at’ others rather than having a two-way conversation; not good at ‘small talk’
- Difficulty interpreting and using facial expressions and gestures
- Being less aware of socially expected behaviour, for example, criticising their teacher or refusing to join in a classroom activity
- Being easily overwhelmed in social situations and needing alone time
- Not enjoying situations that most children like, such as school excursions
- Trouble with cooperative play; wanting to play the same way every time
- Having no or few friends
- Having unusually intense interests
- Having a strong need to follow rules and routines and becoming upset when these change
- Sometimes displaying unusual physical movements, such as touching, biting, rocking or finger flicking
- Being over or under sensitive to sensory stimuli (e.g., textures, sounds, smells, taste)
- Sometimes displaying aggressive behaviour to avoid stressful situations
- Anxiety is common, especially in adolescence
If you relate to most or all of these signs, or you know someone who does, you might wish to learn more about pursuing an autism assessment. Autism: What Next? has information for children and adults who are looking to receive a diagnosis or have recently received one.
Whether you or your daughter is pursuing a diagnosis or has had a diagnosis since they were a child, accessing autism-specific support in the teenage years is crucial for navigating the challenges and changes this stage of life brings. Many autistic teenagers and young women benefit from support in the following areas:
- Health and safety: Important topics can include driving, swimming, travelling, going out independently, bullying, screen addiction and alcohol and drug use.
- Mental health: Rates of depression, anxiety and other mental health challenges are higher amongst autistic teenagers. It’s important teenagers and their families understand the signs, risk factors and how to approach seeking help.
- Sexuality: Understanding the concepts of sexual orientation and gender identity is important for autistic teenagers to develop a sense of self safely and proudly. It’s also vital that all teenagers, autistic or not, receive sex education and accessible information around sexual health.
When it comes to understanding autistic teenage girls and young women, hearing from those with lived experience is invaluable. Discover Isabella’s story of receiving an autism diagnosis as a teenager and how this had transformed her young adulthood.
Autistic women
Many women on the autism spectrum make it well into their adult years before receiving a diagnosis, let alone beginning to consider if they are autistic. This is usually due to the barriers mentioned above, particularly a lack of understanding of autistic women and the conscious or subconscious pressure to mask.
Some women may begin to wonder if they’re autistic when their child or children are diagnosed. Others might have been approached by someone who has suggested they should pursue a diagnosis. And others might just want to understand why they feel and do things differently.
For women on the autism spectrum, a diagnosis can bring up a mixture of emotions. Many women feel sad and frustrated that they lacked support and self-understanding for so long. However, an autism diagnosis can also bring immense clarity, helping women understand and appreciate themselves and what they need in the following areas of their life, among others:
Having professional and autism-specific support is crucial for women with autism. However, knowing what kinds of support are helpful and what makes a support service credible can be difficult. Check out these pages on Autism: What Next? on services and support available to autistic adults, including different support options and how to know if they’re effective.
Below are some common signs of autism in women. Scroll down to also discover other common signs of autism in adults, which you might also relate to:
- Being aware of the need to — and wanting to— socialise
- Often being thought of ‘just shy’
- Copying, and mimicking people in social situations
- ‘Camouflaging’ difficulties by masking (discussed above)
- Having only one or few close friendships
- Being intense and possessive about friends
- Being ‘mothered’ in primary school but often bullied in high school
- Having well developed language skills and gestures
- Having an intense imagination, although fantasies may be very controlled and repetitive
- Restricted and repetitive behaviours that are more focused on movement, people or animals, such as hair twirling, music, fashion, TV shows and horses
Mothers, sisters and female carers
Alongside autistic people themselves, the autism community is filled with amazing mothers, sisters and other women who support people on the autism spectrum. In partnership with autistic women and girls, these women and girls make amazing contributions to our community and broader awareness and acceptance of autism.
Supporting a loved one on the autism spectrum comes with triumphs and joyful moments, but it can also be challenging and isolating, too. As a sibling, it might be difficult to connect with your peers, and as a mother or carer, it might be difficult to relate to those with neurotypical children. The additional responsibilities and stressors of parenting or being a caregiver for an autistic person can also have impacts on your health, relationships and sense of self.
Wherever you’re at on this journey, or whatever challenges you may be encountering, it’s important that you have support at every step so you can be the best advocate for both yourself and the autistic people you know. Here are some important areas to focus on when looking into support or assessing what support you have currently:
- New diagnosis: If your child has been diagnosed with autism recently, you might be feeling overwhelmed. Discover ways to support yourself and your family to better understand the diagnosis and put new supports and systems in place.
- Sibling support: The needs and experiences of siblings can often go overlooked, even by siblings themselves. Learn how to support yourself or an autistic child’s sibling/s.
- Burnout: Both autistic burnout and carer’s burnout are major issues in our community. Discover the signs of both types of burnout, how to make a full recovery and how you can prevent burnout from occurring in the first place.
- Self-care: Although not a substitute for professional support, self-care can make managing our health, wellbeing and day-to-day responsibilities easier. Visit this link for advice around self-care for caregivers.
Sometimes, you might require professional support to navigate a difficult period or to assist you day-to-day. This is completely okay and is the case for many parents and carers. This page on therapies and supports offers more information.
Your next steps
Whether you’re an autistic girl or woman yourself, or a woman or girl who loves and cares for an autistic person, we hope that you can take some time this International Women’s Day to recognise your strengths, achievements, and contributions to our community. We also hope you’re able to ask for and access support if you need it.
For further information and support, you can visit the following links: