“You’re So Ordinary”
What is masking and why does it matter?
The voice down the phone is laughing at me again, enough that I feel infantile, reduced to a child like state in seconds. Nuance isn’t his forte.
“You’re so ordinary.” Pause. He thinks being funny.
Cue internal sigh.
The following line was to imply, as a joke, that I am somehow a fake Autistic person. Sigh. Heard it before, bored of it before. This isn’t “irrelevant” - and it matters more than we think or acknowledge. Sigh. Again. I’m not going to bother explaining to this person - it’s a battle already lost.
The sexism of the diagnostic criteria that means women and girls are diagnosed later on in life does not stop with the moment someone says “you’re Autistic.” Stereotypes pockmark the process, and nuance means there’s a gap where individuals fall through - but why does it matter? And professionals are realising this catergory is generally better at masking, too.
So, yes: indignant rage was in fact channeled to write this piece - as I am beyond ****** off by this.
More on that in a minute:
What is masking?
Masking is a recognised hallmark of the clinical diagnosis of Autism Spectrum Disorder, sometimes referred to as Autism Spectrum Condition. It is a mechanism of ‘to become’ Neurotypical - as in, to present as not Autistic - through the suppression of other hallmarks an individual experiences of the condition. There also may be an element of mimicry to this - such as in mirroring behaviours of other people.
What does it present as?
Each and every Autistic person is different - and therefore have a profile of access needs that are also not the same.
I can only answer this one from my own perspective:
Facial expression - it’ll look like a strained smile, almost clownish, most of all when in a distressing circumstance. Two years ago I had a ‘friend’ determined to prove I was a liar about my diagnosis of almost a decade - they were drunk, high, but screaming in my face, touching me, hitting my arms. The clownish smile at the bar where we’d been with other people was to not draw attention to this.
Deliberate hand gestures, others have said I look as if performing by say of talking with my hands.
Shorter, sharper sentences.
Likely to agree to things I don’t want to do - by way of getting rid of the issue.
As a teen I would copy the hair and make up of particular people and try force myself into clothing that was a massive issue.
The voice.
This is by no means an exhaustive list - but it’s a start. If you look on my first head shots - such as on the back of my book - that series of photos is showing a masked person. I changed it for an unmasked set this year - take a look at the difference. To me it looks like it’s all in the eyes.
Example one:
My current headshot. The word that came across from other people was “powerful”. This is unmasked.
And, to make it interesting - we don’t always know if we’re doing it! And the diagnostic criteria lacks the nuance to pick up women - as we are socially conditioned to conform societally. Patriarchal standards only started to think “maybe women can be autistic too” recently. Yep.
This is not however to be liked. It is to become, not a behaviour other people do. It is a neurological mechanism.
What are the implications?
At this point, there’s going to be a lot of head scratching and whataboutism from some reading this email.
Masking is so often associated with things such as risks to mental health as well as meltdowns. There’s a cultural trope of where an educational establishment says ‘can’t help, they’re fine’ - but a child seemingly explodes when at home, owing to the hours of keeping this up. Because - can you believe - they are still Autistic! Mental health is a risk also - and some stats on this are truly scary, coupled with the impact generally on life expectancy.
And all because we want to have standards of ‘to normalise’ rather than ‘to embrace’. When the latter is better for reasons of well-being.1
How is this an intersectional issue?
This newsletter is called The Disabled Feminist - for being at the intersection of disability (autism, likely dyspraxia, Covid 19 conditions) and being a woman. It’s an intersection that marks every facet of my life - because discrimination on both facets happens often.
Here are two examples:
The Department For Work & Pensions made me sit in on a review recently - because, even though Autism is a life long, neurodevelopmental disability in law, apparently people like me can just learn skills around symptoms. But if you cut the only support available, as is often the case with PIP - a payment FOR independence reasons - then the process starts all over again. I cannot just learn my way out. This is an incentive to mask, surely. Why is this a thing acceptable when you wouldn’t dare to suggest a wheelchair user should just grow back working legs? It makes no sense but indicates a binary view of disability. And the same questions of a historical nature had to be answered.
A therapist I see due to a diagnosis of anxiety recently tried to correct me in a session that an experience of discrimination was ostensibly not ingrained at an organisational level and wasn’t because I was a woman. This isn’t just my experience - gaps in women’s care is well documented. Look to Rebel Bodies by Sarah Graham, for instance! It’s a systematic issue - not just an irrational thought or an experience that happened in isolation. She seemed not to believe this was real, despite factual documentation, because somehow presenting as ‘ordinary’ makes this irrational. How can any professional therefore treat a patient?
“Just unmask” isn’t that simple.
And it is such a privileged mindset - in failing to consider intersections such as race. Where did all those allies go? Because this is massively naive - and it’s an emotional labour demand, too.
The culture of justification by demand - enough so strangers pass comment on what looks like disability - is ingrained, systematic and harmful. ‘Ordinary’ is a trope that is reductive of girls and women who are Autistic - and we need to call time on this not “irrelevant” issue right now.
A Sales Pitch All About Books…
This month is *the* month that my book turns a year old! It was a project made out of a lockdown and sheer tedium - along with some memoir and jokes thrown in. This is what a few people have said about it.
“The Autism Friendly Cookbook is a striking manifesto on the importance of accessibility in cooking. With adaptations front and centre, this book from Lydia Wilkins is sure to become a kitchen staple.”
- Natasha Lipman, journalist and host of The Rest Room podcast:
“Cooking is one of the foundations of independent living. This charming, inviting book is designed to make this basic life-skill accessible to everyone. It's not just a collection of tantalizing recipes, it's a celebration of autistic community.”
- Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity:
“A delightful guide full of important information for neurodivergent foodies - we've needed this for years!”
- Chloe Johnson, editor at Disability Review Magazine