Just a bit of Background to this

I was sitting at my desk the other day, trying to come up with a million more interesting things I could do instead of the boring task I was supposed to be doing, that’s ADHD dual diagnosis for you!

Anyway, out of nowhere came the idea of writing a poem about Autistic Masking.  Don’t ask me where it came from because I have no idea, other than the fact I feel masking is a significant part of my being, it’s who I am… or not!?

I firmly believe masking is the reason, I have a job and I am reasonably successful at it. It is also a significant reason why I have been married for 30 years (to a wonderful, sympathetic and understanding wife). 

However, it has and still is a significant contributor to many of my mental health issues.

So let me set the scene here, I do not do literature or poetry, I don’t understand the language, I do not understand why people pour over text looking for hidden meaning.  To me, if it says Fred did ‘A’ because of ‘B’, then that’s what it means.  It doesn’t mean Fred did ‘X’, or the real reason was ‘Z’ and certainly doesn’t mean it wasn’t Fred after all, but Jim.  You get my drift.

I have never written a poem before unless forced to do so in school, and certainly not in the intervening 44 years.  My previous attempts were, let’s say, poor, and that’s being generous.

Nevertheless, I proceeded to get some thoughts down and the ‘I don’t mean to’ theme quickly emerged. I won’t say any more at this stage because I don’t want to spoil the reveal. On reading some of the partial drafts to my wife, I realised the poem worked better if it was read aloud, rather than from the page. Maybe because it was pants?

Despite my reservations about the quality of the prose, I wanted to share the poem with a few select friends, allowing them to understand my struggles with masking and its consequences. I decided that a video would be the best way to share, displaying the words as I said them. The autistic geek in me also enjoyed the technical challenge of working out how to do it.

Moving on a few more days, having shared it with a few people, I found they liked the video, and I was persuaded to share with a wider audience, and here it is!  I also unilaterally decided to add some further thoughts on masking rather than just plonking a video on the page with no context.

What follows is by no means extensive, and I seriously had to stop myself going full autistic info dump.  But thank you Ruth and Deborah for allowing me a late shot at fame (or will it be infamy, we will find out).

My Spoken Word ‘Poem’ About My Experience of Masking

Let’s Clear Some Things Up

Please note everything contained here is my opinion/experience and does not mean it is the view of Aspire.

Please also note I am not that hung up on language I have no preference for being referred to as a person with autism or an autistic person, or normal vs neurotypical vs neurodivergent.  I will therefore use the terms interchangeably.  I have bigger problems to worry about,

What is Masking?

Some will already know that Masking (or camouflaging as it is also known) is a common ‘feature’ of Autism. 

For me, this is a conscious/subconscious suppression of autistic traits, and the development and use of techniques and approaches to social interaction, in an effort to appear neurotypical.…………..or ‘acting normal’, if you prefer a snappier but potentially more controversial phrase.

You can argue it is a trauma response aimed at protecting yourself from the ongoing risk of further rejection, discrimination, stigma, etc. from a world that is not geared up to cope well with difference.

Masking and Me

I was diagnosed with Aspergers at age 42 and I am now 60.  Even after diagnosis, I didn’t know I was masking until probably into my 50s as my self-awareness grew alongside the information available, primarily on the internet.

On reflection, I had probably been masking subconsciously for 50 years or so from a very early age, in an unconscious response to messages I was getting from people around me. 

Until recently, I honestly thought everyone else was doing the same, just that they did it much better than me.

My masking largely comprises a mental spreadsheet that I use to drive behaviour.  I have heard other autistic people call it a list, or a list of rules, or scripts etc.   However, all the descriptions I’ve heard used, all boil down to the same basic thing, a list composed of rules or scenarios and an appropriate response to each one.

In other words, I intellectualise social interaction, virtually nothing is real or spontaneous, because spontaneous means ‘off script’, and ‘off script’ (life has taught me) is when things go wrong. Going wrong means I say or do something that reveals I am an alien in a neurotypical world and it usually ends in embarrassment, shame or a telling-off of some sorts. When I find a response I have made is ‘wrong’, I work out why, and amend my spreadsheet.

I mentally rehearse conversations. My wife often catches me unconsciously mouthing what I am going to say.  Whole conversations are planned, how they might develop, what the to and fro might be and what the potential paths and responses might look like etc.  Heaven forbid that the conversation develops in a direction I am not prepared for, because that means I am off script and we know what can happen when things go off script.

I often joke that ‘if you ask a question I am not expecting, don’t be surprised if you get an answer you’re not expecting’.  There was a perfect example of this when I was helping to deliver one of the courses and Ruth asked me a question just as I was mentally preparing to give my section of the course.  My panicked blunt response to a perfectly reasonable question and one I could answer easily under different conditions took Ruth and the delegates back.  I was able to reflect a few minutes later and give a proper response, but I wish I could have bottled that moment because it was such a perfect demonstration of an ‘off script’ moment and what can happen.

The spreadsheet also explains why I sometimes take a while to respond or I speak in a very measured and considered way, because this mental process of finding the rule/scenario and planning conversations takes time and effort.  This whole process is exhausting, and I often need to decompress at the end of the day when my resources are totally depleted. 

I can cope relatively well with the work environment because it is more predictable and I am unlikely to be asked random questions, but I am still exhausted at the end of the day and need to decompress. Social situations are more challenging, and I often have to take a short time-out to recharge. My friends and immediate family know this and accommodate my time outs. Work events immediately after the working day are the worst, with no end of day decompression to recharge I can struggle. These days, I may sometimes find excuses not to attend.

Advantages of Masking

Avoiding: trauma, stigma, prejudice, shame, discrimination, rejection, physical and mental harm etc.

I personally believe that; to get a job, climb the corporate ladder, be in a relationship and generally survive in the world not geared up for me, it is necessary to mask, and be good at it.  In addition to this, masking provides a platform for better socio-economic outcomes, having friends and outside interests etc. better/easier access to other services such as health, and of course financial independence from a working.

Disadvantages of Masking

Of course, this is absolutely not a zero cost strategy.  There are significant downsides associated with masking. Increased instances of anxiety, depression, low self-esteem, suicide, burnout, meltdowns, breakdowns etc.

Some people decide the benefits do not outweigh the disadvantages, who’s to say what the right answer is, where does the balance lie between better socio-economic outcomes and wellbeing?  Please note, I do recognise self-employment as a potential avenue for achieving both beneficial outcomes.

I also believe Masking is the single biggest contributor to late diagnosis (or being lifelong undiagnosed), misdiagnosis and non-diagnosis. The better you are at hiding in plain sight the less likely you are to be ‘spotted’ by the medical profession. A profession already woefully under trained in autism and as a result, related mental health issues such as depression or anxiety are treated as stand alone. If you get beyond that, then a world of GAD, Bipolar, BPD etc misdiagnosises potentially awaits. If you do manage to get a unicorn NHS Autism assessment then ‘makes eye contact’, ‘has friends’, ‘is in a long-term relationship’, are commonly seen as reasons that back up non-diagnosis. Both misdiagnosis and non-diagnosis can have devastating and potentially dangerous consequences (e.g. psychotropic drugs) as well as long lasting implications. BPD and Bipolar will always be on your medical notes, and it’s quite well documented that ‘structural stigma’ can affect access to other medical, yet unrelated, services.

Conclusion

Society is getting better, but we are far away from the point where people like me feel they don’t NEED to mask and where I am accepted for who I am, where my quirks and faux pas are understood and where I am ‘given some slack’, remember, “I don’t mean to”.

I sometimes envy those who say to the world, “here I am, I don’t care what you think, accept me as I am.  I choose not to mask and accept the consequences of not doing it”. But I will probably never join their ranks.

I am autistic – very few people know that about me. I tend to keep it to myself for fear of what people will think. I’ve never necessarily felt different to those around me, however before my diagnosis, a small part of me knew I didn’t function the same way as others. I’ve grown up around people with autism which made it difficult to tell if my ‘quirks’ were learnt behaviours or not. When I was eight my dad was diagnosed with autism, when I was twelve my brother was diagnosed with autism, and when I was fifteen I was diagnosed with autism. I find certain textures very uncomfortable to deal with, I have an eye for detail in everything I do and am often not satisfied with the work I create, and I also love having a routine. These differences, to list a few, have followed me throughout my life, fluctuating through different challenges I’ve faced.

One of my biggest challenges is how my autism impacts my mental health. For as long as I can remember I have suffered from anxiety and depression, and this has recently been diagnosed as ‘chronic’ and will be with me for the rest of my life. I was once told by a psychiatrist that unfortunately ‘that comes with the territory’- apparently autism and depression are a package deal. Although this is sad and naturally difficult to face, I deal with these issues with medication and therapy. However, the other difficulties that stem from my autism can’t be dealt with in a simple way and have taken years of learning and understanding of myself to overcome.

However, before I could even begin the journey of managing my autism, I had to receive my diagnosis. Commonly, women are diagnosed with autism later in life, and this was the same for me. Due to something called ‘masking,’ when an individual changes the way they act as a form of camouflage and a way to fit in, women are able to cover up their real selves and fly under the diagnostic radar. It is often the case that left untreated, this mask slowly slips and only then are women noticed for their autism. This was my experience exactly. By the time I entered year eight of secondary school I was exhausted from hiding my real self. Day after day, my true identity was being revealed. However, my symptoms didn’t match those of my dad and brother and so no one thought that I could also be autistic. It wasn’t until my mum did some research and a psychologist suggested that I could be autistic did I start the process of getting a diagnosis.

School, especially high school, was one of the worst times for me. If I was to list all the things I hated about school it would be the length of this page. In Year eight my anxiety surrounding my studies got so bad that my attendance was down to just 30%, which led my mother to make the hard to decision to take me out of school. I then finished the school year and Year nine enrolled in an internet school. For me this was the best decision, I was able to focus on myself while also going to school and getting an education. Due to my schooling being online I was given the freedom to attend however I wanted, whether that be in my pyjamas, in bed or even at my grandma’s house, when my anxiety was extremely high this was very important for me and my future. I believe that mainstream school doesn’t work for everyone and that the child knows what is best for them. For me, I loved internet school but definitely missed the aspect of being around my friends. When I did go back to school in Year ten and eleven, I would often end up having a major meltdown towards the end of the year due to me having held it together, meaning my mum would end up taking me out of school again for the last month or so of the school year. These meltdowns were usually triggered by teachers not understanding my autism and the best ways to help me.

I rarely tell people I’m autistic as I don’t know how they’re going to react. A select few of my friends know and before telling them I’d work out if they were to be trusted or not. I’ve had some bad experiences of telling people I’m autistic, for example, in year ten I told my friendship group that I was having problems with school. They were understanding for less than a week and after that they started leaving me out completely, causing my self-esteem to fall. These experiences are some examples of many that have demonstrated the taboo that surrounds autism and has made me cautious of who to trust. Despite having built up these walls, I know now that I have people around me who love and support me.

Fortunately, I lived in a very understanding household. Growing up there was three of us diagnosed with autism, even though we all had different routines we manage to seamlessly blend and move around each other with only a few arguments here and there. Separately we all had our challenges, which we would find difficult to understand however it let us all grow as individuals and become more understanding.

I am autistic – very few people knew that about me. It’s taken time for me to accept my diagnosis but I’m ready to tell the world.

If there is anything you’ve read and related to or need a friend who has had similar experiences then don’t hesitate to contact me: @mayalouisaberry on Instagram and mayaberry@hotmail.co.uk

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