Diagnosis/Self Awareness – How Does That Affect Masking?#TakeTheMaskOff

 

Until the age of five, I didn’t mask. There was no need to. I was free to exist in my little world without fear of ridicule. I was happy with who I was. Then one day my mother took me to a strange place. This place was loud and scary and had lots of other children in it. It was a sensory nightmare.

My mother stayed with me for a while, then she got up to leave. I remember trying to leave with her, but she told me that I had to stay there. So I did what many children do on their first day of school – I cried.

The teacher sat me on her knee, but it didn’t comfort me because I didn’t like the closeness of her. She was a stranger invading my personal space, but I couldn’t move. I couldn’t speak. I couldn’t do anything to change the situation. A bell rang (loudly) and we were told to go outside where it was hot and the noise was deafening. It hurt my ears. I mean really. I didn’t know what I was supposed to do, so I just stood in the middle of the playground trying (and failing) to process the sensory stimulus that was threatening to overwhelm me.

That was the first time I remember experiencing loss of control.

At that moment, a girl walked up to me. I thought she was going to talk to me. Maybe offer me some friendliness? But she didn’t say a word. Instead, she looked at me as if I was something particularly nasty. Like shit? Then she pinched me hard on the arm.

Whatever I was expecting it wasn’t that.

To the onlooker, it must have looked like I didn’t react at all, but inside of me all hell was breaking loose.

I stared at my shoes while my brain went into overdrive.

I remember wanting to run off home to be with the family who loved me unconditionally and the invisible friends who understood me.

I also remember that nobody came to help me.

Nobody.

How could nobody have seen this?

And why had my mother left me in this horrible place?

At the end of that first day of school, I went to collect my coat, but there was something else on my peg – a mask. I placed it over my face and I wasn’t me anymore.

I wore it for the next forty-one years.

In my forties I became ill. The mask had been slowly suffocating me and now I was struggling to breathe – to live.

During this time I saw a doctor who saw beyond my anxiety. He sent me to see a psychiatrist who sent me for an autism assessment.

Nine months later, I was formally diagnosed as autistic.

First there was relief. Then came the grief – not for being autistic, but for all the time I’d lost trying to be something I’m not and can never be. I grieved for the fearful child that I’d been, the troubled teenager I became and the adult who masked so much that she lost her own identity!

In the beginning, masking is helpful because it provides a way to fit in with everybody else, but over time the mask gets heavier because you lose energy and strength. The mask starts to suffocate you. But you’ve worn it for so long you don’t know how to take it off. Then, life has a way of forcing change upon you and it often comes in the form of mental illness.

Mental illness shrinks you. Literally, in my case. My clothes became loose. My skin lost it’s elasticity. My mask came loose. In the end, it came away with no effort at all, but it was because I was ill. I thought I would feel vulnerable without it, but mental illness takes you to the darkest place you could imagine. A place you NEVER want to be again. I would rather take on the world in it’s full judgemental glory than go back there!

I masked because the world didn’t want the real me and I needed to try and be like everyone else to survive. Being me wasn’t an option – certainly not when I was school in the 70s and early 80’s. It also meant that I flew under the autism radar.

Masking delays diagnosis. Boys are diagnosed a lot earlier because they are generally crap at masking. The example I can give is of my son and myself. My son doesn’t mask and he was diagnosed at 4 years old. I have masked for the majority of my life and I was diagnosed at 46 years old.

Since my breakdown and subsequent diagnosis, I no longer care what people think of me. I get to be me, now.

Epilogue

I walk out into the middle of the infant school playground towards the smaller version of me.

She looks lost, awkward and out-of-place.

She’s hurting, but nobody knows it.

I gently take her hand and whisper, ‘Don’t worry. I’ve got you now’.

We walk past the girl who is responsible for the bright red mark on my younger self’s arm.

We could use the law of retaliation and give the little bitch an eye for an eye, but this is about healing, not revenge.

So we place the girl’s image into an imaginary balloon and let it float up into the sky.

Then we walk off into the cloakroom where a solitary coat is hanging on its peg.

I remove the coat and replace it with a well-worn mask.

We don’t need it anymore.

We’re free.

Late Autistic Diagnosis.

A lot of people suspect they are autistic but don’t know whether to go for the formal diagnosis or not. Many are happy to remain undiagnosed whereas others, like me, need validation.

Am I Really Autistic?

Chances are you know you’re autistic.

I knew as soon as my son was assessed four years ago..

I went home and read as many female Asperger books as I could and then did the full tears/snot thing because within those pages were women JUST LIKE ME!

My oddities take up four pieces of A4 paper but the bottom line for me was the feeling that has plagued me ALL my life and that’s the feeling of not belonging to this planet. We’re not on the same wavelength, the planet and me. More so, I don’t understand most of it’s human inhabitants..

The Benefits of Diagnosis

  • It can help you and your family understand why you’re a weird sod.
  • You may get access to benefits and support services.
  • Your employer, should you choose to disclose, has to make reasonable adjustments.
  • You can grow old and not worry about being forced to play bingo in Shady Pines oldies home.
  • You can be part of a community that understands YOU.

How To Go About Getting A Diagnosis

The first step is to speak to your GP.

This didn’t happen with me because, well, I’m awkward.

I’d already made up my mind to go and see my GP to ask for a referral when my anxiety worsened considerably and getting myself better took priority over everything else. However, in July I ended up at A&E with a panic attack. The doctor (an angel in human form) suggested I saw the hospital psychiatrist who spoke to me for about an hour and the result was that she referred me for an autism assessment. It wasn’t the usual route to assessment but for me it was a case of right place, right time.

So, go see your GP.

  • Only talk about the autism, not the boil on your bum.
  • Take in some notes if it helps you.
  • Tell them why you think you are autistic.
  • Explain why a diagnosis would benefit you.
  • Give brief examples of your struggles.
  • Allow the mask to fall because this is one occasion where it’s beneficial to be yourself.

Do your homework before you go in and find out about your local services. Maybe phone up the National Autistic Society helpline and speak to an advisor or if, like me, you are a phone-phobe, you can ask somebody to do it on your behalf?

Some GPs don’t know autism from their armpit but don’t let that put you off. Go in there armed with your info and Guidance For GPs  and bamboozle them with your knowledge. Don’t be fobbed off and if necessary see another GP.

When I had my assessment my anxiety was MASSIVE which was explained to the psychologist. Anxiety amplifies the communication and sensory issues and when I went back for the diagnosis I could barely speak and my eye contact was abysmal. I had to remind myself to look in the psychologist’s direction every now and then. Hopefully when I go back for my follow up appointment the anxiety will have subsided enough for me to engage and get something out of the session other than staring at the carpet..

You have to decide what benefits there are to being diagnosed and if that’s really what you want because once you have been officially diagnosed there’s no going back.

Since being diagnosed I feel as if a weight has been lifted off me. All those years of trying to find an explanation for my issues is at an end. For however long I have left I can be me knowing that I’m not as alone as I thought I was..

I am relieved to understand why I’m the way I am. I struggle and always will do but there are positive aspects to my autism, like how I experience the arts. I don’t just hear music, I feel it. I don’t just read a book, I become the character and those feelings stay with me long after the music has ended or I’ve turned/swiped the last page. There are two extremes to me with no in-between but then if there was an in-between, I probably wouldn’t be autistic.

I’m not fussed about terminology. I refer to myself as ‘autistic’ rather than having autism but it doesn’t really matter as either is a massive improvement on ‘weird fucker’ or other such things I’ve been called in my time. The important thing for me is that people understand autism itself.

It’s a human thing to want to belong and be accepted. In a perfect world all differences would not only be accepted but embraced. We’re a long way from that but with awareness things are getting better. Diagnosis isn’t right for everyone and it’s something that requires a LOT of thought so don’t rush into it.

Take as much time as you need.

I took four years.

Finally..

Don’t let age stop you from going for a diagnosis. If a codger like me can get diagnosed at 46, anyone can. In fact, people in their 60s and 70s are being diagnosed.

It’s NEVER too late.

Thank you for reading.

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