Who is going to help the Lost Autistic Girls?

This week on Community Corner, blogger and mother ‘The Pierced Protagonist’ explores the realities of the lack of recognition of autistic girls and women in this personal and beautifully written reflection:

I have two children.

The boy is 9 today, and the little girl is 7.

They are my two eldest children.

Both of them have been unusual children.

From an early age, whilst they never had delays, their behaviour and milestones were unusual. Neither of them crawled, but went straight into walking. They were obsessive over their toys - he would play with his trains for hours on end, and she would carry the same doll with her everywhere she went. Both could speak in full sentences by 18 months old. Both were potty-trained shortly after their second birthdays - but neither of them seem to easily understand what their body is telling them. One will go for hours without using the bathroom, the other will wait until bursting and then get hysterical.

Both of them have sensory issues. He has food and texture phobias, she has obsessive behaviour around touch and smell.

Both suffer from anxiety. His anxiety expresses in his being stubborn. He’ll become fractious and argumentative. Hers is expressed in a lack of sleep, unexpected tears, micromanaging behaviour and physiological symptoms like stomach cramp.

Both do exceptionally well at school and are performing well academically. They both make friends readily enough, but misunderstandings are common and they can be prone to being manipulated or bullied.

Neither of them deal well with routine changes.

They are both caring, logical people with a very rigid moral compass.

Both of them ‘stim’. He flaps his hands and makes sound-effects, or chews his clothes. She taps on things, plays with her hair or lays on the floor.

They are both fluent readers and exceptional speakers. Yet he’ll be mute in times of severe stress, and she’ll speak in an immature voice.

Whilst rare now, both of them have the potential for horrendous meltdowns; especially if not managed carefully.

They are both incredibly similar yet, despite both being referred, only one of them received an autism diagnosis - My son.

My daughter, I was told, didn’t have a ‘pervasive’ enough condition to warrant a diagnosis. When they said it wasn’t pervasive, what they actually meant was that she wasn’t autistic enough at school.
And I cannot tell you how angry that made me. For years, the autistic community, and some medical professionals, have been screaming out about masking behaviour and about a group of children known as the “Lost Girls”.

Lost Girls, in a nutshell, are autistic girls who fail to fit the male stereotype of autism, so go through life largely undiagnosed. Many of them don’t even realise themselves until they end up having an autistic child of their own.

Autistic girls are often quiet, studious little girls.
They read well, speak well, write well.
They love animals and make a significant effort with their peers.
They meet, and often exceed, developmental milestones.
So they pass under the radar.

But, the problem with these girls is that they evade discovery by engaging in a behaviour known as ‘masking’. Masking is where someone mimics the behaviour of others in order to hide the unusual characteristic of themselves, with autistic girls hiding the outward expression of their autism. Desperate to fit in, they reduce their stims, hide their interests, change their behaviour, and they build an external mask. However, these masks are heavy, and they cause significant problems in those girls, namely with their mental health.

Authenticity of self is one of the best markers of good mental health, so if you compare those two children, my son has the better mental health, because he appears ‘more autistic’.

He does not hide who he is.
His stims are pronounced and obvious.
He’ll talk at length about Warhammer whether someone is listening or not.
If he doesn’t want to do something, if he doesn’t like something, he’ll bloody well say so.

She won’t.
She’s a people-pleaser.
She’ll accept hugs she doesn’t want, just to make someone happy.
She changes how she behaves, what she wears, depending on the company she’s in.
She hides fear.
And, now and again, it wears her down, and she breaks.

She cries, she rages, she thinks everyone hates her.
She thinks she’s useless.
She’ll slam doors and sob into her teddies.
She’ll scream that she hates me.
She’ll have nightmares and upset herself so much that it makes her nauseous.

That’s what masking does.

And I know that because I do it.
I mask.
And that little girl is an almost exact replica of me.

And I look at her, I watch her play the game, and my heart dies a little inside.
I watch her burn out, trying so hard to pretend, and I remember doing it all myself. I remember trying to be like everyone else, trying to act like they did, dress like they did.

And I watch her do it too.

And I fear for her.

Because, for a masking girl, it just gets worse from here.

As she gets older, the mask gets more complex, it gets harder to wear.
Social structure in secondary school is so much more difficult to understand.
People are manipulative, cruel.
Boys complicate things.
Hormones make everything harder to deal with.
Being a teenage masker is horrific.

And that’s why so many masking girls fall off the wagon in their teens.
It’s why so many of them start to cut themselves, or starve themselves, because the weight of being someone you’re not all of the time is so destructive.
It kills you from the inside out.

You feel like all your relationships are fake, but you daren’t be yourself in case you end up with no friends at all.
And, over time, you forget who you were.
So you get stuck.

The mask you show to other people, this elaborate personality, isn’t truly you.
But the you that was once behind it starts to disappear and fade into the darkness.
Hence, you’re a “Lost Girl”.
You have two personalities, yet are truly neither.

And that’s where the hit to their mental health comes from.
Their identity, their sense of self, their confidence, it’s gone.

I wanted to avoid that for my daughter.
I wanted a diagnosis, I wanted to give her answers, I wanted to get her help, and they closed the door in her face.

They could see my records, the depression, self-harm, eating-disorders, rape-counselling; and they *still* wouldn’t help her.

She’s not pervasive enough.

So who will help her?
Who will help the masking, struggling, self-hating girls in our midst?

Not the medical professionals.
Not the wider community.

We will.
The Lost Women.
We have to help them.
We need to lead the way.
We are the only ones who can.

There are three women in my life who, like me, fit the stereotype.
They’ve had eating disorders, they’ve had bad relationships, they’ve battled demons and hardships all their lives.
I don’t know if they see themselves, but I do.
I see them.

All three of them are mothers and, rather strangely, all three of them have both a boy and a girl child.
All of them have partners, jobs, lives.
And all three of them find it hard to truly fit in.
All three of them have ended up in situations that hurt them, and damaged them in some way, yet all of them have somehow survived.

But we need to do more than survive.
We need to live.
And we need to save those that follow.
We need to save the girls with the suicide rate 9 times higher than anyone else.

And there is only one way we can do that.
By dropping the mask.

The only way we can save those girls, our girls, is by being ourselves and by paving the way for them to do the same.

We need to stop hiding.

We need to stim, and have special interests, and wear weird things.
We need to eat strange things in strange ways and not be ashamed.
We need tattoos and piercings and anything that makes us happy.
We need to bin off both autistic and female stereotypes.

And then, perhaps, we can give others the strength to follow.

It’s going to be hard, but we need to rediscover who we once were, and we need to be that person.
Not the person we think people want to see.

That is the only possible way to start to fix the damage, to fix the wounds of a lifetime.

This world, this society, this culture.
It may have taken us, it may have damaged us.
But we cannot let it have our daughters.

Lost Girls, Lost Women, I see you.
You are not imperfect.
You are not damaged.
You are not broken.
You are not bipolar, or borderline, crazy, or mental.
You are autistic.
And you should be allowed to be yourself.
You don’t need their judgement.
You don’t need their stereotypes.

You need to be free.

I see you.
You are strong, you are beautiful, you are unique.

And it’s time to come home.





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Jessica Dark