One year before my Autism diagnosis (and prior self-identification), I thought I had OCPD (Obsessive Compulsive Personality Disorder), so I went to see a private psychiatrist. Because of the high levels of stigma surrounding Personality Disorders, most people do not seek them out. They are given. The fact that I was doing so illustrated just how much I needed my truth, whatever that truth turned out to be.
I was clinically assessed over a number of weeks. The conclusion… a reaffirmation of a previous Generalised Anxiety Disorder diagnosis given by my GP, and an additional diagnosis of Social Anxiety disorder.
Had the psychiatrist been even the slightest bit Autism aware, particularly of non-stereotypical Autism in women, and not just mental illness aware, he could have found my truth there and then. And yet I consider myself one of the lucky ones! Thankfully, I found myself in the end.
Relying on a system lacking in neurodivergence awareness to find Autistic people is likely to leave many lost forever, especially the non-stereotypical Autistic people. These people are often searching for ‘why’, suffering with illnesses, Autistic burnout, and feeling like they are broken and don’t belong.
This is the reason why I will not stop raising awareness of non-stereotypical Autism.
Image Credit – Dr Megan Neff
I was diagnosed Autistic with suspected Dyscalculia at age 45 in 2021, then my 26 year old daughter two months later, then my 8 year old son three months after that. All of us were missed by well over 100 health, social care, and educational professionals who had the chance first. My daughter was pregnant at age 15 (imagine how many ‘professionals’ move in on a family at that point!). I self-identified in the end, then parent-identified my children before assessment. I wrote our story down. Why?
Because the system is incapable of finding us – especially if (on the surface) we are high achieving, successful, social masking Autistic women – if we don’t empower people to find themselves through sharing our stories and information about non-stereotypical Autism, others may be lost forever. We suffered incredibly for those lost years – cycles of burnout, mental and physical illness, bullying, abuse – suffering that continues to impact us now.
My debut memoir The Umbrella Picker is my story that became our story as our journey unfolded.
Mum-of-three, and grandmother of four, social entrepreneur, Jane McNeice shares her life changing diagnosis that took her from feeling broken, to the knowledge that she was different to the recognition that her difference was her strength all along!
At age 45 Jane McNeice learned she is Autistic. Her memoir and debut book The Umbrella Picker documents her journey to finding her neurological truth (which was self-identified), through to accessing a formal diagnosis a year later and the journey that followed.
Jane’s second book (launched on 13th Feb 2024) Strength not Deficit moves beyond the journey to the knowing she has today. Jane has worked out the secret to her own success – a very specific Autistic trait – and how this has created the successes that were keeping her Autism hidden for a long time.
Though the trait is specific to neurodivergents such as those with Autism, its qualities can be emulated by neurotypicals to achieve success.
Jane does not shy away from the fact that success and challenge/suffering are not mutually exclusive, but rather highlights that, very often, they are bedfellows.
Strength not Deficit makes predictions about the future for Autistic and neurodivergent people, who will be found, and how finding other unidentified Autistics helps neurodiversity, and could change a system which currently finds Autistic people by pathologising all and everything they are. Jane challenges Ableism.
“I did not get an Autism diagnosis because I can memorise 7500 words verbatim in a matter of days, or because I achieved first class grades at university, or because I run marathons. I got an Autism diagnosis because the assessment process, as it is currently, says that what I am is a deficit. Why is it that we identify neurodivergence solely through deficit, rather than through strengths?”
“We are always in need of more stories that will inspire people and help spur them on as they ready themselves to take the plunge into the high-stakes world of entrepreneurialism. Getting a business up and running from scratch can be an incredibly daunting task – no matter your aptitude or level of experience – and it’s not always easy to see the light at the end of the tunnel. With Strength Not Deficit, author and accomplished entrepreneur Jane McNeice offers a refreshingly positive outlook that is sure to motivate any aspiring businessperson and fill them with the confidence they need to succeed.”
“Challenging ableist views and societal stigmas, her story illustrates that Autism needn’t be an obstacle to overcome in business and that, on the contrary, it can be a real advantage. Yet while her experiences are undoubtedly specific, the lessons gleaned from them can be applied to anyone who has a goal that they are trying to achieve.”
Daniel Fell, CEO at Doncaster Chamber.
I half wondered what the senior colleague was saying at the time, my highly visual brain dragging me to a literal vision of thickening skin tissue. Eventually, I understood it to be that I needed to toughen up, not cry to the point of inconsolability, and to have some control.
It was 1995, I was 19. I had a 20-week-old baby at home, an extremely low mood, and I had started a new job 12 weeks earlier due to a lack of understanding of my maternity rights and needing to find a more local job and secure income, believing my SMP (Statutory Maternity Pay) was coming to an end when it wasn’t. My employer had also misinformed me.
I had made an admin mistake, a mistake that someone else in the workplace took the blame for, and yes, it was blame rather than any intention to ensure the error didn’t happen again and to improve systems. And it was my fault.
I was inconsolable, upset because someone else had taken the blame for my mistake, upset because I loathe getting into trouble, and now I was being told I had to report to the consultant concerned, confess my culpability, and apologise, particularly because someone else had taken the blame. I stood with the senior colleague, cried in front of the consultant (I was already in tears as I was being marched to their office), became non-verbal, and created all-round embarrassment. I don’t even remember his response other than his reference to the impact of the situation and blame being hurled across the room between the two senior colleagues.
Needless to say, I was destroyed by it all, and the following week – illustrative of an active grapevine – I was asked what had happened by another senior colleague, which resulted in them saying to me, “You’ll need to grow a thicker skin.”
Situations like this are the reasons undiagnosed neurodivergents need to know they are neurodivergent. Through a neurotypical lens, I needed to toughen up, take responsibility for an error on my part, and use effective communication to resolve the tension and conflict. Redress the harmony for all concerned.
Today, 2024, I now know I am Autistic, and a lot of what happened that day (and for which I suffered weeks of upset after, leading to my eventual resignation) could be explained by knowing I was Autistic – for everyone concerned. The most important reason I needed to know is because the event left me feeling I was faulty, to blame, that I had something wrong with me, and I was inadequate – not just because of the error, but because of how I responded – because despite how hard I tried, then and for a long time after, I could not seem to grow that damn thicker skin!
You see, I have a gift, a beautiful gift, but one that is seen as a curse in our society. One that people often want to correct. I am a highly sensitive person, to hurt – physical and emotional – yours and my own. I am also an empath – you cry, I taste your tears – an HSP empath, if you will. I carry a heavy weight for these gifts. In spite of this fact, I wouldn’t change them for the world, and what I have come to know, and really needed to know in 1995, is that…my skin will never become thicker, and what’s more, I am not faulty because of the fact that I am not ‘thicker skinned’.
I would later learn that I am not just an HSP empath but also Autistic and that many Autistic people are HSP Empaths (contrary to the pervasive myth that Autistics do not have empathy) and the situation when viewed through an Autistic lens, would have been viewed very differently.
- Use of idioms like “You’ll have to grow a thicker skin” isn’t immediately clear for Autistic people, as we often take things literally. Literal but not stupid – I do know what most mean – but I have to process them as they are unclear forms of communication.
- I worked in a large place with lots of people, lots of strangers, lots of authority, and lots of constant noise. My brain works more effectively with quiet. With quiet, I can concentrate and am far less likely to make mistakes and errors in my work.
- The error I made was a failure to put one blank form in a folder. I have executive functioning challenges with my Autism that cause me a poor working memory, but my long-term memory is exceptional, another curse of why I remember this event so vividly. Lists of things to remember are difficult for me until they move into my long-term memory through sufficient repetition. I was still new to the job; this had not yet happened.
- I was preparing folders while dealing with interruptions and liaising with the general public. Autistics, including myself, often struggle with cognitive flexibility – the ability to switch between tasks and resume where we left off immediately and effectively. Dealing with interruptions with cognitive flexibility issues is difficult.
- I struggle to communicate when conflict arises, and this can cause me to become emotionally dysregulated (meltdown and close down) and to become non-verbal. I was totally dysregulated, and this was the reason I could not speak.
- When I cannot cope with situations like this, I retract – the resignation – this retracting is a trauma response for my own protection.
A week or so before I left, one of the other clerks said to me, “You are the best one we have had so far.” The employer lost out too.
Situations like this, and they exist in their plenty for many Autistic people, become little and big ‘T’ traumas. They add to the already heavy weight that we carry living as neurodivergent in a neurotypical society, built by and to accommodate, the predominant neurotype. We are left with the cognitive and emotional scars.
Today, after my Autism diagnosis, and with the greater awareness that I am an HSP empath, which I had recognised well before my Autism self-identification in 2020 and diagnosis a year later, I accept that I am not flawed (not perfect either), but that I am within the realm of ‘good enough’ as a human being and as a worker. Good enough is more than okay.
Failure to recognise Autism and to be supported with adjustments and neuro-affirming workplaces, and the added failure of society to see highly sensitive empathic people as a gift rather than something to correct, means that we can often end up feeling broken and wrong rather than nurtured and supported. We either work less effectively, or organisations have all the cost and disruption of losing good staff when we can’t cope and leave.
So,what needs to change?
- We need to find who the neurodivergents are, Autistic or otherwise. There are so many of us living not knowing we are neurodivergent, left feeling we are at fault, rather than learning we are ‘different’ and living in an unaccommodating society.
- Workplaces need to support from the top down, declaring their support for neurodiversity and neurodivergent employees through publicised policy and their zero tolerance of ‘ableism.’
- Policy needs to be put into practice through awareness raising of neurodiversity and neurodivergence, through training which includes recognition and understanding of the part that ‘ableism’ plays in neurodivergence, and ‘lived experience’ sharing. Training is not enough without the ‘lived experiences’ of neurodivergent people, because they are the experts.
- Flexible working as standard.
- Flexible and supportive management practices.
- Reasonable adjustments to support neurodivergent people.
- Co-operation and empathy across all neurotypes – neurotypicals (approx. 80%), and neurodivergents (approx. 20%). Currently the neurodivergents are forced to do the majority of the adapting and bending. Everyone needs to work together so the whole of neurodiversity benefits.
- Personal wellbeing support plans for ALL employees, regardless of neurotype.
- Have recognised and trained Neurodiversity Champions.
- Encourage allyship from everyone towards their neurodivergent colleagues – those who will support their neurodivergent voices and lived experiences of neurodivergence, challenge ableism, and create positive change.
- Person-centred approach – always ask, never assume – everyone is different, every neurodivergent is different through their unique ‘spiky profile’ – what benefits one neurodivergent person, may not benefit another.
Mind Matters is currently developing training that will support the development of Neurodiversity Champions. Watch this space for further details…
What are the positive things about my autism diagnosis?
I am going to answer a few questions that people asked me about having Asperger’s. I was asked: What are the positive things about my diagnosis?
Here they are:
1. As others I know who have been diagnosed late in life, it’s a sense of relief. A relief that, as someone else said, after a life of feeling somehow different, you now know why and have a real reason for being that way. When I was diagnosed in 2011, it felt that all the pieces of my life, esp the negative side (not fitting in, difficulty making friends), finally all fit together.
2. Because I know I have Asperger’s, and been diagnosed late, I can help others, esp younger autistics. Giving them tips based on how I was at that age, from school to work. I feel that this is a definite positive thing. My blog is one of those. My children’s fiction ‘The Rainbow School’ and ‘The Pet Rescuers’ series are also part of this. Even my children’s picture books ‘The Unlucky Adventures of Sammi Squirrel’ have an autistic character in it, although I haven’t made it as obvious as my fiction.
3. As an adult with Asperger’s, and grown up with it, I have experienced a lot with autism. Most recently my hospital stay in 2021. I can also help adults, especially autistic patients, with how to cope in hospitals. This is something I am working on and want to pursue in 2024.
by Julie Day Author of adult and children’s magical realism at Julie Day
I am Autistic and I socially mask. I do not choose it, I do it to survive, and in my blog ‘Why I am unable to stop socially masking’ I explain my reasons why. Yes, I hear you, we ALL socially mask – a work mask, a social mask, amongst others. I am not referring to
neurotypical social masking, I am referring here to Autistic social masking, it is AMPLIFIED, and it is curated to a level of detail most won’t even comprehend.
On the back of my late diagnosis at age 45, I totally recognise my social masking for what it is, and the need for it, and today I adopt what I refer to as ‘strategic masking’ – allowing myself to mask where the benefit out ways the cost, but giving myself permission and enough solitude so I can unmask for decompression and restorative purposes. I totally get this, but what I don’t get is how masking fits with the notion that a ‘normal’ doesn’t exist, often inferred in comments like “Well, what is normal anyway?” As someone who has always felt like an outsider, an observer not a participant, I recognise the comment as well intended to be inclusive, so that those of us on the fringes – the outliers – feel included. I value the sentiment, but the statement also leaves me confused.
The statement infers that there isn’t a ‘normal’. This, for someone who socially masks, is the confusing part. If society doesn’t have an idea of what it accepts as ‘normal’, then firstly why do so many of us feel excluded, and secondly, what exactly is it that I am trying to blend in with, or to camouflage through my Autistic social masking? Can one exist without the other? If I was a chameleon, to camouflage I am morphing my colours into a background, hiding in plain sight. One is co-dependent on the other. As a camouflaging Autistic, in the same way I must morph my presentation and behaviour into what society accepts as ‘normal’. I have to 1) work out what society accepts in the range of ‘normal’, and 2) become it.
With no desire to be arrogant, I did it – camouflaged – and very well indeed. For 45 years I had others believe I was ‘normal’. No one spotted I was Autistic (or at least no one ever suggested it) and post diagnosis, no one has ever said they already knew. I self-identified prior to diagnosis, no one ‘found’ me. As a female Autistic, I appreciate there were a lot of other systemic variables that also prevented an earlier diagnosis, but I am without doubt that my skilled social masking played a major part in the delay.
I pretended to be one of the herd, one of the accepted, when in fact I was always an outsider. I observed the herd in detail, and I mimicked…to the detail! At face value I portray what ‘normal’ is, but if you look deeper, my outlier signs were always there. My first husband was 20 years and six months older than me. This is not ‘normal’ by accepted standards. How do I know? I know because of people’s reactions to it 1) judgement 2) rejection (subtle but there), and 3) the morbid curiosity people show in the ‘not normal’ aspects of my life history. This is just one example of several ‘not normal’ things in my life history. Another…I became a biological grandmother at age 36. These ‘strange but true’ outliers, which are varied, are some of the features that cause the herd to reject and fail to accept Autistics, even those of us that hide it well and present as ‘normal’ in all other respects. These days it takes me very little time for me to spot judgement and distain – an acquired but sadly well practiced skill – so in most cases I hide my outlier facts unless I am trying to make a point (like now). Finding out I was Autistic has given me permission not to hide my differences so much. I still censor some things (part of the masking), but not as much as pre-diagnosis.
With genuine curiosity, I am asking again…If a ‘normal’ doesn’t exist, what is it I am masking? If ‘normal’ does exist, would it be more realistic to stop pretending it doesn’t, so we can focus more authentically on acceptance. Pretending suggests we are all accepted, yet sadly, there is more than enough evidence that many of us are not. Judgement and lack of acceptance is the very reason I mask.
The scale of the issue
Given what we now know about neurodiversity, it would be reasonable to say that all workplaces will have a neurodiverse workforce, many workers being neurotypical (the majority brain type or neurotype in our society) and a lesser number being neurodivergent (those whose neurotype differs from the majority).
The challenge is knowing what the exact profile looks like in a particular workplace and the value of knowing this.
If we were to simply take the 1 in 7 (Local Government Association) statistic of how many are diagnosed neurodivergent and of the differing types, we could make assumptions as to what a workplace neurodiversity profile should be expected to look like; or for example, 1.57% of society is diagnosed Autistic (National Autistic Society), and therefore the same could be expected in our workplaces. But what if we consider that just 21.7% of Autistic people are employed? 1.57% doesn’t then reflect so well the actual presentation in a workplace.
In reality, our businesses are unlikely to reflect the general societal presentation of neurodiversity, especially in specific demographics. For example, we are aware of a considerable proportion of middle-aged women, many of whom have been missed and live undiagnosed neurodivergent, so we and they do not know they are Autistic or ADHD, for example. Add to that that certain industries and occupation types may attract certain neurotypes; then we may find that some businesses have a disproportionate number of neurodivergent or particular neurotypes, such as ADHD or Dyslexia, for example.
If we take the STEM industries as an example: science, technology, engineering, and maths, there is a greater possibility that these industries employ equal to, or more, neurodivergent than neurotypicals. I think we will also find a disproportionately higher number of Autistics in the ‘helping’ industries; these attract empaths and super-empathic Autistics. And do all people who are neurodivergent know through self-identification or diagnosis that they are, in fact, neurodivergent?
When we look at all the issues surrounding identification and diagnosis, there is likely to be a greater population of undiagnosed neurodivergents than actually diagnosed in our society (and workplaces). I also surmise that ableist attitudes towards neurodivergence create a blind spot in that we fail to recognise the ‘high achievers’ who are neurodivergent, so they too slip through the net (unless suffering becomes apparent, such as mental illness). If they do get diagnosed, it will likely be later in life. These considerations in mind, it can leave many blind spots in the workplace around neurodiversity.
Increasing focus on all aspects of mental health and neurodiversity
I have worked in mental health and employment since 2008. In the last fifteen years, mental health has gone from being ‘the elephant in the room’ to something high on most workplace agendas. There are exceptions, of course, but the general trend of interest and action has been increasing positively. My company delivers mental health training, and the increasing demand seen since its inception in 2015 illustrates both the incline seen in business start-ups and our clients’ accelerated interest in supporting employee wellbeing. What would rarely have been conversed about or might have been conversing about in hushed tones in the past is viewed differently and talked about more freely nowadays. The case for employing and supporting people with mental health difficulties is recognised. That said, we still have much to do to reduce the stigma and discrimination; we are most certainly a long way from eradicating it.
I have watched cultural and business changes in the field of mental health, and I am now seeing it happening again – in neurodiversity. I am mindful that my exposure to the literature and the noise in this area may well come down to the circles in which I move, particularly since my own Autism diagnosis at age 45 in 2021, but I also take into account here what my clients are talking about, and what they are requesting from us as a training provider. I am a pattern-spotting Autistic with a high systemising brain, so I notice trends and patterns quickly, but I don’t think you need to be skilled in this to spot the current changing landscape. It is evident in the following:
· High-profile celebrities sharing lived experiences on TV
· Documentaries sharing what it is like to be Autistic
· Magazines sharing lived experience and late diagnosis stories
· Middle-aged women at the forefront of narrative sharing (because they were most often missed).
My business and neurotype allow me to pick up on these things earlier than most. Now, let us say I wasn’t working for my own company but instead was employed by another business. My ability to pattern spot trends could be of real benefit to them, but they would only know this if they understood my neurotype and my Autistic profile (not all Autistics have a high systemising brain, some are high on the empath scale, for example). Would you get my full potential if you didn’t know my ability here? Jobs tease out our strengths and skills from the start, thorough recruitment processes do this, as does observing the way people work and how they apply themselves to problems, it’s happening all the time if you watch carefully. The challenge is that in many cases, we may not know the strengths lie (in part) in the fact that the person is neurodivergent, and we may not be capitalising on this in the best way.
Many neurodivergents do not know they are neurodivergent for lots of reasons, and some will be awaiting assessment. This itself is a lengthy process under statutory services in the UK. In both cases, some will have, and still go, unsupported in terms of the challenges that can coincide with the strengths. For example, my pattern-seeking ability is poor when I am experiencing high social anxiety with my Autism. Challenges and difficulties are common for neurodivergents – we live in a world built by and for neurotypicals, not for neurodivergents – and such challenges can manifest in mental and physical illness, amongst other areas that portray our suffering.
If we simply take the statistic ‘80% of Autistics experience a mental health issue during their lives’ (Autistica), then a business employing a lot of diagnosed, or undiagnosed Autistics, will likely employ many people who are trying to live with and manage mental and physical illness. The presence of illness in their business will not necessarily tell us about what they are or are not doing to support it, but rather that they employ people carrying a more significant statistical risk factor for mental illness. Please don’t misinterpret this to mean we should not employ neurodivergent people (or any other ‘at risk’ group), there are a lot of ‘at risk’ themes, and each and every one of us will harbour both risk and protective factors which will increase or decrease our statistical likelihood of mental and physical illness, and some of them can change over time. For example, a sudden unpredicted bereavement could put us immediately at a greater statistical risk of mental illness.
The potential benefits of neurodivergent staff
What I am highlighting is that there are strengths and challenges in the neurodivergent. If we can support the challenges, we can capitalise on the strengths. Industries need them more than ever because what neurodivergents offer will help the economy and communities to thrive:
· Ability to see a problem from a unique perspective.
· High visual skills and ability to see in 3D.
· Pattern-spotting.
· Attention to detail.
· Hyper-focus.
· Perseverance.
· Excellent memory recall for facts and wonderful long-term memory.
· Passion for equality, social justice, and fairness, often being free of judgement.
· Ability to absorb copious amounts of information.
· Exceptional memory recall for facts.
· Creativity, imagination, and innovation.
What can employers do?
We cannot entirely remove the blind spots in neurodiversity, but that would be no different to any other area of diversity which is less visible. And even the visible signs of diversity can still be misinterpreted and misunderstood. For ethical reasons, we could never make all employees undertake screening for their neurotype. However, there are a lot of other workplace psychometric tests that notice neurodivergence in diverse ways but categorise them otherwise, Myers-Briggs Type Indicator, for example.
What we can consider, however, is opportunities for employers to improve the clarity of neurodiversity in their workplace. It is no secret that the NHS waiting times for Autism and ADHD assessment do not meet the recommendations in the UK NICE guidelines, where there are guidelines that is (these are vaguer for ADHD than Autism), and that people face numerous hurdles to even get on an NHS waiting list. Some will be years before they are assessed or even diagnosed. This leaves a blind spot for employers that could be removed (or reduced in time length).
Many clients that we work with at Mind Matters are looking at whether they can circumvent such waiting issues by supporting assessment where an employee feels one is warranted and/or is experiencing barriers from clinical professionals in terms of the referral or is waiting on an NHS waiting list. Considering the negative impact this has on those sitting in this ‘limbo’ state – mentally and physically – it is in the employer’s and employees’ interests to have answers sooner rather than later and supporting an assessment can be a helpful way of assisting the employee’s mental health. Such a demonstration of support is excellent workplace practice and can facilitate more discussion between the employer and employee about the neurotype – the strengths, the challenges and to be able to support proactively. Supported employees tend to have better mental health, which allows employers to get the best performance from them (and their neurotype). This also improves our understanding of the neurodiversity landscape within our workplace, as the workplace gradually sees a clearer picture and moves closer to the truth, just as the individual does.
In the last 18 months I have shared my story of late diagnosis Autism anywhere and everywhere someone will listen, and I fully intend to continue doing so.
Last Friday I was reminded precisely why I need to keep bleating on and shouting about girls with Autism. I went to view a school for children with special educational needs. The school was specifically for children who are Autistic. My son is diagnosed Autistic and struggling with the social and emotional demands of mainstream education, hence viewing the school.
We were shown around the premises and talked about their provisions for Autistic children.
Whether the school is indeed right for our son’s needs, we are yet to decide, and even if it is, there are no guarantees that a place can be secured.
I was also visiting the school with my daughter as she was exploring it as an option for one of my grandchildren (yes, I have grandchildren in the same age range as my two youngest children, you are not misreading things, and I am old enough). Out of the visit, one thing stayed with me, however, a comment…
“How many children are in the school?” “Oh, we have about 100, but only 12 are girls.” Only 12 are girls! As a late diagnosed Autistic diagnosed at age 45, I really should not be shocked by this, but I am the product of the 1980’s when it was believed that only boys could be Autistic. Twelve out of one hundred is the product of 2023 not 1980! It seems that in forty-five years, we have made very little progress in understanding Autism in girls (and those who identify as female).
I do not believe for a moment that twelve out of one hundred exists in that school because of an absence of Autism in girls in South Yorkshire where I live, it is simply more evidence that we still do not have sufficient
Autism awareness to spot the signs and traits in girls. Even more frustrating, it is not too difficult to learn them. There are more than enough females, and late diagnosis stories available to illustrate how we present, and how we presented as children. The information is out there and not difficult for professionals and lay people to find.
27th March to 2nd April 2023 is World Autism Acceptance Week. Yes, Autistic people do need acceptance, and support, but as yet we are most definitely not in a place where we can overlook awareness.
I will stop raising awareness when I hear numbers that reflect a better understanding of girls with Autism, and when I see it realised in everyday situations such as enrolment at special educational needs schools.
When people encourage me to be myself, not to Autistic mask, or as one Autistic said to me after my diagnosis at age 45 “Just don’t mask!” they make it totally about me, and totally my responsibility, but it’s not just about me, and it never was.
I have Autistic masked my being Autistic for 47 years. I started masking at the age of 3.
What is Autistic masking?
Autistic masking is mimicking Allistic (non-Autistic people) behaviour to fit in, or to hide in plain sight, camouflaging. It is never an illusion for me, but rather an illusion for others. I always know I am different. Some Autistics will become very adept at it, to the extent that it plays its own part in them being missed altogether, or late diagnosed, as was my own experience. These may well be the Autistic people who hear “But you don’t look Autistic”. We do not have just one ‘other’ mask, we may well have several. Masking operates at a deep level. In my experience, it is so automatic and unconscious that I am known to do it in my dreams. It is now a central feature of the person I am and have become. To some extent, we become the masks we wear, but I find that my masks are also intrinsically linked to my values, so at times, having felt the pressure to wear a mask that does not fit with my values – a dirty mask – I will quickly remove myself from the people with whom I am masking so I can remove it. Autistics who mask to survive must be careful of the company they keep.
What do we mimic?
I have been known to mimic anything and everything, someone’s mannerisms, clothing, handwriting, the way they speak (I pick up accents very easily, as do many Autistics), the way someone dances, walks, talks, phrases they use, interests they have, choices (good and bad), anything.
Why do Autistics mask?
Autistic masking is not a coping mechanism, it is a survival strategy. We use it to survive in a community with the rest of the ‘social herd’. It helps us to stay alive. However, Autistic masking comes at its own cost… When we have been overloaded with situations where we need to mask we will be totally and utterly exhausted. It is one of the reasons I need a lot of solitude – to decompress and unmask – it takes a great deal of self-control to mask, and self-control takes energy, so my tolerance levels or as I like to call them ‘control stocks’ for other things can become low e.g. tolerance for noise, impatience, temperature. If I am forced to switch masks quickly, or I am forced to mask in a situation I wasn’t expecting e.g. I bump into someone I know at the supermarket, I don’t always have the energy to mask. Having to don a mask quickly has a cognitive whip-lash effect on me. Ultimately, Autistic masking over a long period of time increases the likelihood of illness and suicidality in those who use it to survive. It is dangerous. I have recognised that my co-morbid anxiety which started at the age of 3 did so because this was when I started pre-school and needed to start masking to survive as an Autistic in and amongst a predominantly Allistic herd. The chronic gastrointestinal problems which followed did so as the Autistic masking had to step up to meet the social demands of adolescence. The day I get to wake up without these illnesses is the day I do not need to mask to survive. I describe my anxiety as living with a permanent sense that I am about to fall down stairs, and it never goes away. Both conditions are cyclic, constantly feeding one another.
The motivation for me to start Autistic masking came about because I recognised my own social deficits early on, at the age of 3, and because the Allistic tribe quickly showed me that it is was not acceptable or safe for me to be my authentic Autistic self. It wasn’t safe in 1978 when I was three, and it’s still not safe now. Autistics are often viewed as weird and different (in negative ways), criticised, rejected, and treated negatively in the forms of bullying, control, coercion, discrimination, and other forms of direct and indirect abuse. I witness this happening to other unmasked Autistics, and it becomes an additional warning that it is still not safe to unmask. Experiences such as this happen when we do Autistic mask, but can be more frequent and worse when we don’t. So, if I am to remove my masks, and be totally authentic, I need to know it’s safe for me to do so, and as I see it, 46 years on, it is still not safe to do so. I have simply learned to play the game of life for an Autistic person.
I am likely to be able to unmask when I can believe wholeheartedly that I will be accepted, supported, and not rejected for who I really am, and until that day arrives (or I am able not to care about those things) then I don’t see how I can unmask. Not only do I have to change, but society must change also. If we want Autistics to unmask, society needs to take responsibility for its ill treatment of Autistic people and make it safe for us to be ourselves.
Autistics ask for the same acceptance as any other minority group e.g. LGBTQ+ and BAME, amongst others (and yes, there is much work to be done there too), but for the Autistic community we have further to go. You would never hear the phrase “If you have met one black person, you have met one black person”, yet we regularly hear the equivalent statement said about Autistic people. This shouldn’t need to be said, but society is so lacking in understanding of Autistic people that such statements are still needed.
Most people are much more themselves when they feel safe to be themselves. One of the very challenges is that I make it very convenient for society by masking my Autism. I adapt therefore you don’t have too. Why would Allistic people challenge a status quo that serves them so well and doesn’t compromise their existence?
If someone is hiding their identity or true self, there is a reason for it, and the reason may not just be them.
The very fact that you are ‘considering’ you may be autistic means you’ve worked a lot of it out already. That is a big step, huge in fact! So maybe my words will only solidify what you already know.
Tips can be tricky, why? Because all Autistics are individually very different, but nevertheless we share a lot of common traits. Firstly, for a diagnosis of Autism, we all must meet criteria relating to the Triad of Impairment: a clinically diagnosable degree of difficulty in social communication, social interaction, and social imagination, or as the eminent Dr Lorna Wing once said “It is all social, social, social” to which I concur. Everything about our struggles is to do with ‘social’.
Have you ever had the sense that you do not belong in this world, that you are an observer rather than participant? That is the story for so many undiagnosed Autistics, and furthermore, many of us are left feeling we are wrong, bad, and unworthy because we do not ‘fit in’.
I should firstly share that one of my own Autistic talents is I can pattern spot 78% faster than my neurotypical counterparts on test, so I have an eye for patterns across my fellow diagnosed and undiagnosed Autistics, and I have a ‘Neuroscope’ for spotting my people. Many of the traits don’t in fact require that level of sophistication, but here are a few things I’ve identified from the literature, my work in mental health, and my exposure and pattern spotting of those who are undiagnosed Autistic:
- We get diagnosed (sometimes incorrectly, sometimes correctly) with anxiety disorders of the social kind e.g., Social Anxiety aka Social Phobia, and often Agoraphobia.
- We normalise high achievement, strive for perfection, and nothing less… in a desperate and often futile attempt to prove we are worthy and to trick even ourselves into believing we are neurotypical when we are not.
- We have a diffuse sense of self, never quite feeling in our bodies, or totally grounded.
- We suffer with a whole range of co-existing health conditions e.g., mental illness, gastric problems and often receive an IBS diagnosis, hypermobility, amongst others.
- We never ever feel we ‘fit in’ no matter how hard we try.
- We live life totally exhausted all the time, and this is multiplied for those of us who socially mask (mimicking neurotypicals to fit in), and the exhaustion will not come from work or tasks, it is instead people that exhaust us (regardless of whether the interaction is positive, negative, or in between).
- We are a total contradiction in most things, this will confuse others, and makes us second question ourselves.
- We often struggle to maintain long-term relationships and have difficulties with conflict resolution.
- We have been victim to at least one bully or narcissist in our lifetime, and in some cases will have been abused due to our vulnerability.
- We have sensory issues and challenges with food, and for some of us will be diagnosed with an Eating Disorder (sometimes incorrectly, sometimes correctly).
- We have special interests, we hyper-focus, and we can really shine in these areas. My work is one of my special interests, though I prefer the use of the term ‘obsession’ as this is more the reality.
We have a quirky sense of humour, that some will ‘get’, and others won’t, other neurodivergents will ‘get us’ most. For example, my daughter (who is also Autistic) recently shared a story with me of an online post where one Autistic person shared that all Autistics have ‘T-Rex’ arms. I pondered this for a moment, then proceeded to give my daughter several examples of all the times I had noticed this in myself. After each example she affirmed “Yes, T-Rex arms!” For us this was probably the most amusing Autistic sign yet, and one which might only be spotted by another Autistic with an eye of the detail that everyone else misses. We have T-Rex arms *and it still makes me laugh out loud now*
So, tips, signs, self-identifying…My personal view is how much you will search for your identity comes down to the following three things:
Your IQ + your level of suffering and/or mental illness + how much you want to ‘fit it’ and feel you don’t, and how much you socially mask to compensate for this. I score highly on all three, which explains my endless search… I searched for five years in crime and criminology and have a first-class honours degree to show for that search. I searched in mental illness; I have a successful mental health training business to show for that search. One day I’d like to test my theory empirically, and women are my interest group. The above factors relate to the female phenotype (presentation) of Autism, and perhaps less so the more well-known male phenotype. I do not love train timetables and trains, but I do have a pristine and varied collection of luxury handbags, shoes, and jewellery. We are the same, yet we are different.
Jane McNeice’s new book, The Umbrella Picker, illustrates the struggles of living for 45 years as undiagnosed Autistic and being misdiagnosed with mental illness.
Fact: Not knowing you’re neurodivergent and receiving late diagnosis of autism statistically increases the likelihood of mental illness in adults.
Solution: Identification and early diagnosis gives earlier support and happier people (and can save the NHS £s)
The Umbrella Picker tells the story of how Jane finally found her neurological truth after being a ‘lost girl’ for four and a half decades. After a long and relentless journey of searching for answers, the hand of fate finally revealed to her what she had waited a lifetime for.
Jane explores what it was like growing up as an undiagnosed neurodivergent in a neurotypical world. She shares her honest account of some of her differences including: feeling ugly, lost, lonely, and unlovable as a child, socially masking to fit in and being unable to express how she felt without knowing why.
Finally, having found the truth to her suffering, Jane is no longer lost, and having found her own, unique way, Jane has written the book she wished was available to her 30 years earlier.
If you are feeling lost to yourself, this heartfelt and compelling book may answer your unanswered questions and help you to finally find yourself as you connect with the traits illustrated.
Praise for The Umbrella Picker
“The fact that you have been so open and honest about your life journey is so inspirational to Autistic women.” – Helen Pass, another ‘Lost Girl’ found
“Jane does not shy away from addressing her own mental health experiences, her fears and feelings of isolation. The reader is left feeling Jane has truly peeled away masking layers to portray her true self through her writing.”
–
Manar Matusiak from Living Autism
“This book has been written with so much sensitivity, insight and wisdom. It comes from a place of truth, generosity and compassion which will most certainly help other lost girls to know themselves.” – Alyson McGregor from Altogether Better
About Jane McNeice
Jane McNeice is a wife, mother, grandmother, and business owner from South Yorkshire. Jane’s debut book is ‘The Umbrella Picker’ which documents her life living undiagnosed Autistic and the related struggles and challenges therein. Jane was diagnosed Autistic at the age of forty-five, two months later her 26-year-old daughter was also diagnosed, followed three months later by her 8-year-old son in December 2022.
Three diagnoses in seven months, and none would have been discovered were it not for their own self-identification. Jane has written the book she wishes someone had written for her 30 years earlier, a book that shares the lived experience of being undiagnosed Autistic, a ‘Lost Girl’.
She authored her book ‘The Umbrella Picker’ with the intention of helping other ‘Lost Girls’ to self-identify, because ‘Lost Girl’ experiences are often a mirror to one another. Forty-five years is too long a wait to learn who you are – your identity.
