Hey, it’s Aunt Julie, back with another blog post discussing the uncomfortable truths we face as women in this world, breaking down stigma and fostering understanding - after all, knowledge is power.
In April, we celebrate World Autism Acceptance Month, although I wonder if we shouldn’t rename it ‘World Autism Understanding Month’ as there is still much we don’t know about autism, especially when it comes to how it presents in women and girls.
What is Autism
Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that is most commonly characterized by social challenges, such as interacting with other people, struggling to empathize with others, adhering to routines, and finding bright lights and loud noises especially jarring and difficult to be around.
From my research, many stats suggest that 1 in 100 children are diagnosed with ASD. Though interestingly, a study published via the U.S. National Library of Medicine highlights the gender diagnostic gap in autism, reporting that approximately 1 in 4 boys compared to 1 in 16 girls received a diagnosis — illustrating how girls may be under-identified even though both sexes are equally susceptible to the condition.
The interesting and well-researched book ‘The Lost Girls Of Autism’ describes how, at the beginning of researching autism, it was believed that it was a male condition and therefore, the screening and detection was geared towards autistic male tendencies, which we now know often differ from the way many women with autism present.
How it Shows Up in Boys V Girls
When we think of autistic persons, we look for common themes such as avoiding eye contact, being quiet or non-verbal, repeating the same phrases, repetitive movements such as hand flapping, fidgeting or rocking (known as stimming), lack of social skills, anger, and finding certain textures or types of clothing unbearable. These are all very common in young boys and fit the traditional profiling.
While these may be an indicator and cause for exploration when a young boy acts in these ways, it’s often overlooked in young girls and explained away as her being shy or excitable. Furthermore, due to social conditioning, girls are much more likely to internalise their struggles leading to anxiety or depression and late diagnosis.
Girls are taught from a young age to be kind, show empathy, and to nurture others, while boys are encouraged to explore their ferocity and strength through play. Then there is that old trope - ‘that’s not very lady-like’ versus ‘boys will be boys’. This has undoubtedly been said to us all at one point or another in our lives and has shaped how we see the world of male and female roles, emotions, and characteristics.
The difference here is that young girls are taught the skills to accurately mask their social struggles, which is why, so often, one of the largest social indicators of autism is missed in girls.
The autistic experience in later life
Having learnt how to mask from a very young age and the skewed understanding of autism presentation, it is no wonder that 1 girl for every 4 boys is diagnosed. It is estimated that up to 80% of women with autism remain undiagnosed or misdiagnosed. The side effects are insurmountable when we consider the alienation, confusion, sensitivity, and dysphoria many autistic women experience.
A short anecdote from one of our own team at JM - ‘I grew up with two brothers who were particularly *difficult* from day one, along with a father who fell into the same category. Throughout my life, they were the absolute center of attention and were often the cause of a lot emotional confusion. It wasn’t until I reached the age of 15, after a particularly long and painful meltdown about noise, that my mum looked at me and said ‘Do you think you might be autistic?’
The pin dropped, the light was turned on, and I realised that all these experiences, the ways I had been challenged, (and been challenging) it wasn’t because there was something wrong with me. I could never understand the reasons behind it all, and now I had the answer.
The irony is, since we have all grown up and left home, my sister has had an ADHD diagnosis, along with my Mum, and some of my other female family members are also looking at getting a diagnosis. ‘
If this isn’t the perfect example of young girls diagnosis being neglected by overshadowing male relatives or classmates, I’m not sure what is.
Like with her story, it will often come at the expense of a woman's final breaking point, where the mask slips, burnout hits, and women retreat into themselves, often becoming non-verbal and/or dysregulated; all this before someone notices that something isn’t quite as it seems.
But overstimulation is not linear, it can build and reach a tipping point that might seem irrational to others but is the final straw for sending your body into panic mode - it might be that the tap is dripping while someone is talking to you, someone changed a plan with you, that you can feel a seam on your clothes that is bothering you.
For us, understanding the needs of women is paramount to creating a strong community. JulieMay has had countless messages from people who have finally found freedom from painful, dysregulating underwear because all of our lingerie is designed for the most sensitive skin, and that includes people who have sensory issues and need garments that won’t dig, rub, scratch or feel claustrophobic. Many autistic women report that certain fabrics or seams can feel overwhelming which is why choosing soft, breathable natural fibres like our Rosie - Silk & Organic Cotton Lace Full Cup Wireless Bra can reduce daily sensory stress.
Healing
Now, the only good thing to come of social media popularizing ASD is that it has given space for more people who have lived with these characteristics all their lives to explore the possibility of a diagnosis and seek support in order to better understand the way their brain works. It has also caused a spike in research on what autism looks like in women and girls and understanding why we are so often left undiagnosed.
The importance of learning to regulate your nervous system, before burnout, is vital to sustained wellbeing. This means learning tools and techniques, being able to share your needs with friends and family so that they can better support you and allow space for your needs and even making simple changes like what bra you wear to support you in day to day life. It isn’t just about having a medical label or access to creative grants; it's about finally having your experiences validated and that cloak of isolation slipping away.
Let me make this very clear - autism is not a disorder, a problem, or something to be ashamed of. So, this month, let's get curious about what autism can look like and how we can support ourselves or others who are navigating it.
With bountiful boldness, Aunt Julie x
