Wearing my mask #TakeTheMaskOff

If you’re reading this, I’ve finally overcome a case of writer’s block and written a new blog post! It’s been a year since I last blogged, I’ve thought about taking my blog down, but people occasionally like one of my posts and say they found it helpful so I’ve left it up.

This post is for #TakeTheMaskOff a campaign raising awareness about masking. I’ve been thinking a lot recently about masking and how much it affects me. It also relates to the doubts I’ve had about my diagnosis that I’ve written about them on this blog before. This post, like all my blog posts, is not trying define the experience of all autistic people. Not everyone masks and for those who do, their experience may be different. This is just my experience.

My mask was built on shame and it became such a part of me, I didn’t know it was there.

I was different from the beginning. As a baby I only lay on one side, so I looked strange for the first few years of my life. one of my ears lay flat on the side of my head and one stuck out. I sucked my two middle fingers, not my thumb like normal children. I was hyperlexic and talked early but didn’t crawl or walk for a long time and when I did walk I was clumsy. I wouldn’t go to bed until I’d seen the moon. I was cute, I was quirky, but there was something different about me. Nobody could quite put their finger on it. My mother later confessed that she thought to herself ‘Why can’t my child be normal’.

The world set about teaching me to be normal.

Sometimes the lessons came in the form of reprimands or corrections, sometimes gentle teasing, sometimes outright bullying. Sometimes they were meant lovingly, sometimes more unkindly. Sometimes the lessons weren’t overt, I’d be left out or ignored. The lessons came from everywhere, from home, from teachers, from peers, from friends’ parents.A lot of the lessons were very small, like a gentle “don’t do it like that, do it like this”. Some were larger humilitations, like bullies threatening to kill me; like being made to stand up in front of the whole school every lunch time. My sensory sensitivities made it impossible to eat school meals and I was punished for this. Sometimes I didn’t understand what I’d done wrong.

All these things added up, incrementally erasing my sense of self like erasing parts of a picture, a pixel at a time. You may not notice those missing pixels at first but gradually they add up.

I wanted to hide who I was

I’d get a heavy feeling of dread in my stomach when I realised I’d done something wrong or put my foot in it. I’d try to cover it up as much as I could, try to find explanations for my behaviour that would make people understand and not be cross, laugh or say nasty things. I did all I could to stop this from happening. I’d try to copy people and imitate their behaviour, so I didn’t get in trouble or get rejected.

When puberty came, the lessons got harder and the shame worse. I found the sensory experience of secondary school coupled with hormonal changes overwhelming. I retreated into myself, finding it hard to speak. I was bullied and isolated. I’d get home and meltdown. I did things and behaved in ways that I didn’t like. My parents believed I could control the meltdowns. They thought I was just being a difficult teenager and reacted with anger. I had no support or help. I took all the blame and all the shame.

I was convinced I was hideous and unlovable. Other children knew it, my family knew it. The shame was like a dead weight and masking was a way of papering over those shameful parts of me.

My mask was constructed of imitation and echolalia.

It was built grom things I learnt in books, magazines and TV shows. It was glued toether with fragments borrowed from other people’s personalities. I learnt to suppress my own opinions and likes and convince myself to like what others liked. As I grew older, I found the numbing effect of alcohol helped, to the extent that I felt broken and incomplete sober.

As the years went on the mask became so much a part of me that I forgot it was there. I just lived with an all pervading fear that somehow I’d be found out, that there was something dark and shameful in my soul. I had long periods of depression, I became suicidal but I carried on masking, even in psychiatrists’ offices.

Diagnosis didn’t stop me masking

When I found out I was autistic. I realised I masked. I just didn’t know how deeply my mask had become part of me.

Instead of feeling free to be myself. I subconsciously tried to adapt my mask. I didn’t realise that was what I was doing but I spent time working out how fit in with autistic people. What persona should I adopt? It was automatic for me to see myself as inadequate and to try to take on aspects of other autistic people, whether in the media or people I met. And when I failed at living up to the ideal, I felt more shame and felt the need to conceal my failings

I didn’t realise I was masking but I knew I wasn’t being completely authentic. I just had a niggling feeling I was faking being autistic. Which only fuelled more shame and doubts about my own autism. It was a painful place to be in in, knowing on one level I’m autistic but yet doubting it.

Seeing the mask

It’s only now, after the 4th anniversary of my diagnosis, that things have shifted.

This year I started to take a step outside the mask. I got involved with running a local autism group. I find it very anxiety-provoking and I’m also not sure how effective I am (being of the ‘couldn’t organise a piss-up in a brewery’ school of executive functioning). But I’m standing up and saying I’m autistic and I’m doing this, I started to accept my own autism and stop feeling the need to mask as an autistic person..</p

I read about research into how camouflaging and masking is a risk factor for self-harm and suicide for autistic people. That was my life story. Somehow, despite the fact that this finding is sad, seeing my experience, my depression, my suicidality and self-harm corroborated by research made me look deeper at how I mask and see it more clearly.

Now I’ve started accepting myself as an autistic person and not feeling shame The autistic world isn’t like the neurotypical world which often tries to hammer people into similar shaped holes. Autistic people are all different shaped, and while non-autistics may try to create a hole made of assumptions and ableism that they think autistic people should fit into, autistic people don’t fit that hole. I fit perfectly into my own autistic hole and I don’t need to feel shae because my experience is not like some other person’s

I can’t take off the mask completely. It’s been too long now. I don’t know who I am without the mask, without all the borrowed fragments of others. But I can stop it hurting so much. I don’t have to live with shame. I can make the mask more functional. Rather than hiding something shameful, it could be something that has utility and that allows me to exist in a society that is still a long way away from autism acceptance.

It will take a long time to heal the shame and learn who I really am. I can’t go back to being the innocent child who loved the moon that I once was. Maybe it will take the rest of my life. But I feel that I’m on the right road now.

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Doubting and questioning again 

I haven’t updated my blog for 3 months. There are many reasons for this, such as depression, executive function but the one I want to talk about is that I’ve been through a long period of doubting and questioning that I am autistic. Again. 

I’m through it now, but it was a painful and damaging experience. 

I don’t know if I have doubts as part of the distorted thinking of depression or as a natural consequence of late diagnosis. Maybe I doubt because some people I care about don’t accept my being autistic and others I can’t even tell for fear of a negative reaction.  Maybe I still see autism in terms of stereotypes and have a lot of internalised ableism. 

Whatever the reason, it’s not a helpful way of thinking. 

My doubts stopped me attempting to connect with other autistic people and get support. I retreated into further into silence. I find it hard to have conversations and feel part of the community anyway because of anxiety but my doubting made it nigh on impossible. 

I felt like a poor example that it’s over three years since I was diagnosed and yet I still doubt I’m autistic. Other people seem so sure, even those who only found out about being autistic more recently.  I admire and envy their surety.  

I dealt with it alone and isolated playing the doubts and confusion over and over in my mind until I wanted to yell at my brain to shut up. 

I ended up back in the abominable position of believing myself to be a failed neurotypical with no possibility of an autistic solution to problems. It’s a lonely, painful place to be.

Then, as always happens, I was presented with incontrovertible evidence that I’m autistic. I had a series of meltdowns and shutdowns (some of which might have been prevented had I accepted my autism). I also went to a support group where I tried out various sensory supports which made me want to purr. Being around autistic people there also helped. 
At last I have that sense of acceptance again. I am sure I’m autistic and the knowing grounds me and makes me happy.  I feel less alone even without communicating with anyone. 

I’m sure I’ll doubt I’m autistic again. It seems to be a cycle I go through. I need to find ways of challenging that thinking so I can get out of it sooner. Talking about it here is the first step but it would be good to find people I can talk to when I’m in it.  It does pass but it would be good to have help. 

There may be other silent doubters out there and I wanted to say you’re not alone. Whether you have a formal diagnosis or are self-diagnosed, even though through periods of doubt and questioning, if you know in your heart you’re autistic you will come through them. 

Book Review: Odd Girl Out by Laura James

When I was about nine, I described something I did at home to a classmate (I’ve forgotten what, but it required a degree of extraversion). “I can’t imagine you doing that” she said “you’re too quiet”. “I’m one of those people who is quiet at school and loud at home” I said.  “What people? Those people don’t exist” she sneered, no doubt confirmed in her view that I was weird.

This was one of many incidents that made me feel an outsider, an odd girl out. It was only in my forties, after my Asperger’s diagnosis, that I found that ‘those people’ DO exist. One of the places I find them is in books like Odd Girl Out by Laura James, Laura recalls being quiet at school and a chatterbox when just around adults. A ‘quiet chatterbox ‘she called herself repeating it over and over in her head adding train noises because it sounded like a train.

Odd Girl Out is a beautifully written and candid memoir tracing the year and a half after of journalist Laura’s autism diagnosis in her mid 40s.  It is honest and unflinching but never depressing or negative as she reflects on her past and begins to comes to terms with her diagnosis, trying to pick out which parts of her were her and which parts were borrowed.

Reading the book has brought up so many memories. I just want to go through it and say “that’s like me” and “that happened to me” and “that” and “that”.

There’s so much in the book I relate to.  From the feeling of uncomfortable outdoor shoes at school to being punished for not being able to eat disgusting school dinners, to living with anxiety and constant fear. From special interests and learning to copy other people to needing routine and things a certain way but being disorganised because of executive functioning problems and much more.

Like me, one of Laura’s special interest is reading. Until I read this book I wasn’t even sure if reading was a special interest. It’s kind of like breathing for me. It didn’t occur to me reading the same book repeatedly, 10, 15, 20 times was unusual – well it’s not if you’re autistic. Like Laura I get to the end of a book and start again from the beginning.  I read fast (I finished this book in three hours and have read it twice now). People often say to me “Have you finished that book? Already??” as if fast reading were some sort of crime.

We are a similar age and read many of the same books . Laura describes reading Jilly Cooper as “you would an instruction manual for a washing machine” looking for answers to life. Jilly Cooper’s Rutshire Chronicles were part of my guide-to-life reading too. I also recall a family holiday in Wales before I went to a new school. I discovered a second hand bookshop selling old Enid Blytons and quickly became obsessed with Malory Towers. I read and re-read them in the same way Laura describes, looking for instructions to follow for my new school.  When we talk about that holiday, my mum says “Ah yes, Malory Towers”.

I’d recommend this to anyone. For non-autistics it will aid understanding of what being autistic is like and challenge stereotypical views of autism. It should be required reading for anyone who has ever said “she can’t be autistic” or “you don’t look autistic” as it shows how someone can be successful, superficially look like everyone else and yet still be autistic.

I think its main value will be for autistic people. I found reading the book an incredibly validating experience and left me feeling less alone and more sure-footed as an autistic person. I unexpectedly found tears in my eyes unexpectedly on a number of occasions.  I’m sure a lot of other people will get the same validation. I can see it being the book that makes someone who once thought “autistic” an alien word see that, actually, it applies to them.

It helped me as well. When Laura said, a year after her diagnosis she realised she was still “a cat, judging myself by dog behaviour”, it made me sit up. Not just because I use that metaphor too, but because three years after my diagnosis, I am still judging myself by “dog behaviour”  and perhaps this is the root of my depression.

I”m sure I’ll read this book again.  When the world feels spiky and hostile, when I’m crushed by the weight of expectations, when I’m sick and shaky from sensory overload, this book will be a friend to turn to. I’ll relax in to it like a warm comforting bath finding understanding and reassurance that I’m not alone. Odd girl out no more.

 

(Thanks to Bluebird Books for a review copy of the book)

 

Research vs reality

Trigger Warning: Suicidal thoughts plus mention of eugenics

After I wrote my last post, I was surprised that a) I’d found the energy to actually finish a post and b) I felt a bit better. Just sharing those thoughts with the world, even if no-one read them, helped slightly loosen the stranglehold depression had on me. And people did read. Thanks so much to those who liked and commented.  It made me realise I’m not as alone as I thought.  I’m going to try to write more and see if it continues to help me so here I am. Apologies for the depressing content…

Anyway, whilst browsing on Twitter, I came across a Psych Central article: Suicidal Thoughts 10 Times More Likely in Adults With Asperger’s (It’s based on this 2014 study of people diagnosed in Simon Baron-Cohen’s CLASS clinic. I read it, looking for answers, help and understanding. But really it just highlighted the fact that while research may be finding out more about our lives, when it comes to help

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Bravery, cowardice and suicidal thoughts

Trigger warning: Please read with caution.Suicide, suicidal ideation, suicide attempts, suicide plans. 

 

I haven’t blogged for a while.  I have a number of half written posts in my drafts folder but haven’t been able to finish them.

The reason is, I’m still depressed. The same depression I wrote about at Christmas has persisted and got worse. I suppose you could say it’s reached crisis point.

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#Depression – one autistic person’s experience

I am depressed. ‘Tis the season for it, just before Christmas.  Just to warn you this is a distinctly uncheerful post about depression with a content warning for mention of suicidal thoughts.

I often get depressed close to Christmas, having lost my bearings and my spoons in the race to get ready for the festive season.  It seems the happier everyone arounds me is (or pretends to be) the lower I get. Continue reading