Spectrum 10k research – there is a link at the end of this short blog. This blog is entirely my personal opinion.
I have needed time to process this research and what it means to me. My initial thoughts were complex – I felt conflicted and confused.
I totally stand by the researchers wanting to improve outcomes and wellbeing for autistic people.
I totally stand alongside every other parent who sees the struggles their autistic child faces every single day – and would give anything to improve that.
I don’t have an understanding of how DNA and uncovering which genes cause autism will improve autistic people’s lives. I look at other genetic conditions that we understand better; like Down’s Syndrome and compare the options…I am not filled with confidence. I would like to understand more.
I appreciate the fear of eugenics. The reality of whether genetic tests will be used to eliminate Autistic people – or simply the bits of Autism people don’t like – or even the co-occurring conditions only – is something we are unlikely to get a truthful and long-term answer to. The reality of eugenics may be cloudy – but the fear Autistic people are expressing, is tangible and totally real. Yet Autistic people’s concerns are being minimised, invalidated, and spoken over time and time again. Autistic people are being tone policed for their communication-style differences, not listened to, not taken seriously, nor respected.
My need for self-care has meant that I have chosen not to get involved in dissecting the methodology, ethics, and motivation of this research at the moment. But a quick background search on the institutions, funders and past research topics has rung alarm bells for me.
What concerns me most with the launch of this research is the way that it was done:
The lack of awareness of how Autistic people may feel about it.
The lack of compassion and empathy.
The lack of foresight.
The missed opportunities to collaborate meaningfully and take people with them.
This irresponsibility has been divisive and enhanced mistrust.
Some Autistic people are quite rightly distressed by this research, yet this does not seem to have been factored into the research – support was not set up alongside the research, to help manage the inevitable and very real concerns people would have. Yes, the researchers have answered questions – but have they even considered the emotional fall-out – and how that may be experienced by Autistic people (who process information, sensory input, including emotions – differently to non-autistic people). Do we feel cared for, nurtured, and looked out for by these researchers?
My initial thoughts were complex – my current thoughts have moved on but are equally complex. I see research with stated good intentions, that also reminds me that given the choice, some people would prefer it, or think it for the best if Autistic people, like me, did not exist. I am significantly deficient enough that they should be offered the choice about which parts of me are useful enough to be allowed and which bits to get rid of.
My genetics and neurology make me – they make me different to the majority, but I am me, and equally valid. I have a right to be here warts and all. Let’s fix society first.
Autistic people are more likely to experience mental health issues – and most will tell you that this is down to how we are treated and the barriers we face – not our inherent so-called deficiencies.
Many autistic people feel ashamed of our differences – we are more likely to experience abuse, be out of work, struggle with education. We frequently mask our autism – not because we want to fit in – but just so that we are allowed to take part. We may struggle with our identity and feel ashamed.
But it is not for us to be ashamed. Every single human has a right to be here. No one – I repeat – no one person has zero physical, mental, emotional, learning, social or other issues. I have struggled with my own sense of worth throughout my life – and I want to say to other Autistic people.
You are welcome as you are. You don’t need to feel ashamed.
Shame on those who say otherwise.
UK research has predominantly focused on the biology, causes, and treatment of autism. Key findings of a report into UK autism research highlighted that academics perceive themselves to be engaged with the broader autism community, but this perception is not shared by other stakeholders, most notably autistic people and their families. Autistic people see the challenges of autism as societal and attitudinal and not about ‘curing autism’.
CRAE, 2013. A future made together: shaping autism research in the UK, London: University of London.
Non-autistic allies – please take a moment to let the Autistic people you know – and those you don’t too, if you feel inclined – that they are valuable as their whole self. This is a message rarely heard by Autistic people.
This brief piece was prompted by a number of discussions I’ve had with people about autistic masking, being authentic and true to your autistic self.
You may like to check out my writing about autistic masking via the menu.
What makes me different?
I’m autistic, so experience the world differently to non-autistic people. My senses work differently – my personal range of sensory experiences is broader than most non-autistic peoples’. I experience some things more intensely (e.g. sound and smell) and others less intensely (e.g. body sensations and balance)
I have less need to form hierarchies than many of my peers – I still love to organise things and compartmentalise them, but we use different systems.
I think about things differently. I tend to consciously think through things that many others find intuitive – and intuitively know things that others have to think about!
So what is the problem?
I am in a minority. A seriously misunderstood minority. This means I often have to hide things like the extent of my sensory overload or my need for clarification.
My logical and literal mindedness puzzles people. My drive for clarity and need for honesty perplexes them.
And often it is NOT a problem. I have integrity, I cannot tolerate inequality. I stand up for what is right regardless of the personal consequences.
So, when is it a problem?
It becomes a problem when I remain dysregulated because I cannot do what I need to do to be in a state where I can learn and thrive. None of us can. But for me, the sensory aspects of the environment – and inside my body (noise, smells, lighting, my emotions) tend to effect me more because my sensory processing works differently.
Being dysregulated always makes thinking, communicating, and looking after myself and others needs, more difficult. That’s the same for all of us.
Humans are social animals. I don’t particularly enjoy socialising and I certainly find humans difficult to understand, but I recognise my social responsibilities. I may not want to hang out with other people for fun – but I choose to have unconditional positive regard for them….. and in fact, some of them are actually quite nice!
When I was younger I would be blunt, straight to the point and say exactly what I thought. I knew I was right. I certainly didn’t aim to be rude. In fact, I thought I was doing people a favour by leaving the bullshit out and getting straight to the point! I saw no need for small talk. I empathised by finding common ground that demonstrated my understanding of the other person’s situation and shared this with them. I used my incredible capacity for problem solving to offer advice, find solutions and share them with others. I wanted to be helpful. My heart was very definitely in the right place.
How was this perceived?
I sometimes came across as rude, self-centred and insensitive.
I am not.
Reflecting on this, it is important to consider that other people don’t necessarily operate in the same way as me. Those sensory and cognitive experiences I listed earlier may be different.
When I appreciate this, I realise how invalidating my responses to others may be. Lets take empathy as an example – a subject I have written about in my personal blogs and for Neuroclastic.
My natural, authentically autistic response to someone telling me something distressing about their own experience is to trawl through my memory for something comparable.
I don’t feel a lot when people share their experiences with me. Other autistic people may be somewhere else in this broad range of sensory experiences and physically feel other peoples pain to such an extent it hurts them too. If I responded with a “yeah well, whatever” to someone’s loss, and my autistic friend with the intense emotional sensations responded with a “omg, that is so awful – look I’m crying too” – neither of us would be much use to the person who was choosing to share their experience with us.
So I developed a technique that uses my very natural abilities of logic and reasoning. I would find something comparable from my own life and tell them about it so they realise that I truly understand.
Except they don’t!
Of course, these genuinely autistic responses can be seen as invalidating for others. And it’s not just issues around empathy where this happens.
If I was to tell someone that they looked dreadful in their new dress when they asked me for my honest opinion, they’d likely be hurt.
I hate lying and I find the games people play where I am meant to know the hidden meanings behind questions, frustrating and disappointing. I am lucky to live in a family where we can be open and honest and not dress things up in untruths.
How can I stay true to myself without hurting others?
As I have matured, I have found ways of remaining authentically me, whilst recognising that other people may be running on a different operating system to the one I’m running on. Expecting other people to appreciate my straight talking just because I’d like them to do that for me, is a non-starter.
I could simply say “I am autistic, I have every right to be autistic and this is how I do things” and expect them to accept this. But they won’t! People don’t. Maybe one day when people understand autism better they will accept our way of being a bit more. In the meantime, I do have people that I can be more blunt with, or skip the small talk. It’s great and is a very small step on a long journey to equality.
Or I could mask my differences and pretend that I am like them too. That I enjoy small talk, that I like to beat around the bush rather than get to the point. That I am happy to lie! But that sucks, and messes with my mental health. I sometimes need to mask my distress and dysregulation in order to feel safer and to blend in – and we all need to behave differently in different situations in order to act appropriately. But long term masking erodes your wellbeing and identity.
How do I find a balance?
The most important consideration goes back to my thoughts on how I treat others – and myself. Unconditional positive regard. Not being an asshole to others or to myself! Recognising our differences and accepting them. Using my desire to find common ground, but not in a way that invalidates other people’s experiences or takes from them and puts the focus on me instead. Not needing to change people, instead accepting them as they are.
I recognise that I am in a neurological minority. The majority of people tend to assume I am like them, because my differences are not usually visible upon first impressions. They should accept me for being me and for being autistic, but they usually don’t.
I want them to treat me in the way that I treat them.
When I am talking with someone that has a different way of being in the world to me, I try and understand how it is for them. Many autistic people do this – it is what makes us so great at masking and camouflaging our autism.
I still use my particular way of empathising to consider that the other person may get an unbearable sensation if I tell them honestly that their dress looks awful on them. Just like I sometimes get an unbearable sensation when I have to make small talk. I consider that they may find our surroundings drab and insignificant and easy to filter out – whereas I am annoyed by the background noise and distracted by their perfume. I hold on to the fact that we are operating on different systems. But I don’t necessarily say all this out loud.
I cannot get them to understand my way of being by forcing it upon them, just like they cannot get me to become less autistic by forcing me to enjoy soap operas and small talk! Nor can I bully them into changing their attitude by blaming or shaming them for simply being born different to me. Nor should they try and bully or “normalise” me or my autistic peers by making us keep still instead of stimming; or keep quiet instead of asking for the clarity we need.
We need to do this together…
I would love non-autistic people to put the same amount of effort into understanding autistic people that autistic people often put into understanding them.
If I am going to accept that I need to be diplomatic when telling you about your dress, so that we maintain our positive relationship and you don’t feel hurt; then I’d like you to reduce the amount of effort you unknowingly make me use when trying to understand your true intentions and desires when we are chatting.
We both need to recognise each others intentions – and we may need to get to know each other and see beyond the stereotypes in order to do that.
Autistic people often communicate really well with other autistic people – we clearly don’t have deficits.
When you know me, you will value my honesty. Don’t write people off because they say or do things that seem odd to your way of thinking. If I accidentally upset you, remember that my intentions may not have been the same as your intentions in the same circumstances – and I’ll try and do that for you too.
I will not compromise my values, but I’m happy to adapt my communication style to accommodate you – in fact I do this most of the time already! Please do the same for autistic people.
All humans have needs, starting with the absolute essentials we need to stay alive such as food, water and the air we breathe; along with all sorts of other needs depending on our individual personalities, physiology, social and emotional requirements.
Whereas the essentials are things all humans require, we may each need different things in order to be able to thrive and reach our potential. Do we ever reach our potential as humans? Who knows? But what I do know is that on the journey towards self-actualization we must consider our uniqueness as individuals.
And for me that includes my autism.
What makes this different for me as an autistic person?
Like many autistic people growing up, I was painfully aware that I was fundamentally different to my peers. I did my best to fit in with them in order to minimise the teasing; the exasperation I created in others; and the bullying. This involved a common strategy used by many people, including autistic people called ‘camouflaging’ or ‘masking’.
As a girl and young woman, autistic masking involved me acting in a way that meant I appeared more similar to my peers than I was – this included pretending I was interested in things that girls should be interested in like bands, boys and make-up. It involved me not asking too many questions that would expose my naivety and my particular thinking style – going along with conversations that involved euphemisms and slang in the hope that all would become apparent. It rarely did!
And hiding any mannerisms, movements or ideas that exposed my autistic differences.
Interacting like this meant I frequently missed out on getting my questions answered – or even asked, most of the time! It meant that I never quite understood how friendships and relationships truly worked, I just sort of understood what it was people did within them – and I tried to copy as best I could. I avoided many social situations because they did not appeal to me, and I was not particularly popular because I did not appeal to my peers either.
All in all, I missed out on lots of knowledge and information that my peers were able to gain through intuition and knowing how to ask the “right” questions, rather than the random, unfiltered questions that went off on a tangent like mine frequently did. My social development wasn’t behind that of my peers because I lacked capacity for understanding, it was behind because I lacked opportunities for gaining understanding. I was too busy masking.
For example, I was bright enough to know that asking my classmates what the technical difference was between the two intimate-relationship based expressions: ‘getting off with’ and ‘having it off with’ would end in them ridiculing me. So, I did not seek clarity. I tried to logically make sense of the language to find the answer out for myself, but failed. That boy stuff all seemed quite odd anyway, as did most of human behaviour, and my naivety and vulnerability exposed me to many risks and left me ill equipped to cope with relationships, and understanding and advocating my needs, rights and desires.
Another negative impact of masking my autism meant I was unable to regulate my senses. I did not recognise or appreciate the impact that noisy, brightly lit, and smelly environments had on me, so I didn’t avoid them or limit them. I forced myself to carry on whilst on the verge of total overwhelm – or I shut myself off so that I could function without feeling anything at all.
Opportunities for gaining knowledge, and for developing decent coping strategies, self-advocating and asserting myself were denied due to my survival strategy of masking my undiagnosed autism.
I’ve done OK, I’m beginning to thrive and I’m recognising my potential and the value of my uniqueness. I’ve got to this point through gaining acceptance of how I am, and by playing to my autistic strengths.
What has this journey looked like for me?
My journey is ongoing, I certainly haven’t arrived at a destination where I have found my purpose – but on the good days I am beginning to thrive instead of just about making it through yet another day of struggles. Life has become less of a struggle – but there was no “Eureka!” moment of throwing away that mask, embracing my autism and finding the world had suddenly become welcoming of my neurodivergence. The world remains biased towards people who on the whole are not like me, society still needs to change and become more inclusive. I am grateful because I have more insight and opportunities than I have ever had that I can use to make my life better.
Unmasking and being authentic
I have always wanted to be accepted for being me, I have longed for people who will appreciate my questions; my unique perspectives; and my differences. But that doesn’t mean I can act impulsively or disregard other people’s feelings – even when those feelings are very different to my own and seem illogical to me.
Humans are social animals. I find social occasions challenging due to my sensory and cognitive processing, but I recognise that I have social responsibility towards my fellow humans. Like many autistic people I am passionate about equality and fairness and I become distressed at the injustices I see in the world and continually seek ways of balancing inequality and making the world a better place.
So taking off my mask and behaving authentically autistic by stopping people mid-flow to ask for clarification; or correcting someone who has made a mistake; or publicly laying on the floor rocking and crying because the noise, lights and smell of the room have become too unbearable; or distracting everyone else by moving about; or telling someone exactly what I think of them – these are all things that are genuinely “me”. They are my default settings in some ways – but should I take that mask off and show them? Or should I keep it all in and hide how the world is making me feel, keep the mask on and let my identity and self-esteem slowly erode away?
For me, the answer is “neither”.
We are social animals; our actions usually impact upon others. Our actions create responses in others and shape their attitude towards us and how we are subsequently treated – whether this is right or wrong means nothing. There are consequences for everything we do.
There will be times that I am blunt, I will say what I think, I will correct people or stop to them mid-flow in conversation. I will need to move about in order to regulate myself. I will experience sensory overwhelm in such a way that I am debilitated by it sometimes. As I said before, these are my default settings – I did not choose to have senses that work in this unfiltered way. I do not choose to take things literally. I am driven by seeking balance and find injustice so very “wrong” I cannot turn a blind eye to it. In fact, many of these so-called aitistic deficits that I was born with, are also my autistic strengths.
Can I unmask then without experiencing negative consequences?
I believe that everyone masks some of the time. It is what makes us human – and social. No one can be unfiltered, or impulsive, all the time and function well socially.
So, I choose not to mask my autism – I own it! And that means being proactive and taking responsibility for myself as well as others. Here are some examples of ways I am authentically autistic:
If I know something is going to be difficult, I prepare. I don’t mask my autism to myself either! Going to town is tough so I plan short trips, I take headphones and my bottle of water. I keep scented nasal inhalers in my bag. I don’t keep pushing myself but take time out to regulate my senses and take stock of the situation. I am proactive so that the chance of me becoming overwhelmed is reduced.
I make arrangements prior to needing adjustments wherever possible. I let someone know that if they are holding a meeting, I will need the agenda up front. I ensure people know that I prefer a text first if they wish to speak to me on the phone. Or if someone just calls, I don’t answer but ring back later when I feel comfortable rather than answering and becoming stressed. If I am entering a conversation where I am likely to need to ask questions, I’ll ask upfront how to do this best. “I’m much better at taking things in when they are written down, do you mind if I make notes please?” or “I tend to lose track if I need clarity, is it ok to interrupt to ask questions if I need to please?”.
I am assertive. If I am asked to do something that will be difficult for me I will state my needs up front without needing to justify them endlessly, make excuses, or apologise for how I am: “Emma, would you like to come to a party on Friday?” “No thanks, I really don’t enjoy parties myself, but I hope you all have a lovely time, thanks for asking me”
If I need to regulate myself, I will politely leave and go and do whatever I need to do, rather than trying to get through the situation silently whilst hiding my needs or disrupting everyone else. I will keep things to hand that help me – I may have things to fiddle with, to stroke, to crunch on, to drink. I’ll choose the chair that suits my needs best and I’ll sit near an exit and I’ll ask if there is noise or lighting that can be adjusted if need be.
I am quite a private person, so I tend to state my needs with little explanation and add to that if necessary. I do not need to justify why I need things to be like they are. Sharing my diagnosis is occasionally helpful but frequently people don’t have a great deal of knowledge about autism and may even misunderstand it. If I am not in the mood to be their teacher, I don’t have to be! It is ok to say “I am not able to wait in this queue because of my disability, please can I go straight in?” I have frequently found that if I am assertive, people will respond more positively than if I bombard them with information about why I need something.
What really, really helps?
Like many autistic people, I have a life full of effort. Effort to fit in, or effort to hide how I really am. Effort to not offend people. Effort to understand how everything works.
Even my unmasking is full of effort. My unmasking means I own my autism and I am proud of who I am and what I have achieved. But, my autistic default settings, as I like to refer to them remain unchanged. I do not choose to be blunt in order to offend people – I am puzzled that some other people do not value honesty as much as I do. I do not ask questions to annoy people, but to understand them better. My need for peace and quiet is not done on purpose to be awkward. My logical way of thinking that is so useful in some situations may seem out of place when it comes to interpreting hidden meanings or reading between the lines – but I accept that many people prefer operating in this complicated, tricksy – dishonest I might even say – way.
I can’t really hide these fundamental facets of my personality. I don’t feel a need to apologise for them either. My autistic deficits (if you view autism in a medical way) are also my autistic strengths: my integrity, my eye for detail, my innovative ways of thinking, my passion and depth of knowledge.
All humans have strengths. All humans are imperfect. That is something that unites us – autistic or not.
So, when I do act authentically me – yet offend you, please remember this: I am probably doing my best. I am probably not being deliberately annoying or trying to point out your errors. I may have defaulted to the wrongful assumption that you see the world as I do. Please try and see the world as I do for a moment too.
I will take responsibility for myself and accept my social responsibilities. This means that I recognise that not everyone else experiences the world like I do, and my actions may be interpreted differently to how they were intended. It helps me when non-autistic people reciprocate and take my perspective and discover how I am perceiving the world. When this happens, they may realise that my lack of eye contact is about conserving my strength for concentrating on their spoken word, rather than becoming overwhelmed by the deluge of sensory information that comes from eye contact. Then it becomes less important to them as they understand that I am not being rude. Then our interaction becomes more positive.
I believe that autistic people compromise, and even deny their needs endlessly. Masking our autism means our needs don’t get heard or met. We constantly try to fit in with a world that may feel alien. My description of how my unmasking works demonstrates how important my sense of social responsibility is. Just because I don’t like hanging out with people for fun, doesn’t mean I don’t care about them. Perhaps if more people were willing to meet me halfway when it comes to communicating authentically, we would have more fun!
Our body image is not just affected by the messages we receive from other people, but by our health, life experiences, upbringing, and personal values – and many more things besides.
Body Image has been a topic of concern for many years. We are bombarded with unrealistic images of unobtainable bodies whenever we switch on the television, view advertisements, or access social media.
The image that we form consists of several factors:
How we perceive our body. How thin, tall, fit, or attractive we are. This may be accurate or inaccurate.
How we feel about our body. Do we like how it is and how it works?
What we think about it. Perhaps we think we should be fitter or healthier, or maybe we’re just right?
The way we treat our bodies. How we care for ourselves, whether we exercise, harm ourselves intentionally or unintentionally, our relationship with eating.
Autistic people may experience all the same type of things in life that affect their typically developing peers, and they will be subject to the same media portrayals of ‘perfection’’. In fact, autistic people may be more likely to experience adverse life experiences such as relationships breaking down; employment and school issues; and poorer health outcomes – simply because their particular neurology puts them at a disadvantage. The way each of us perceives, thinks about, feels towards, and treats our body is complex and made up of a multitude of different factors.
I believe there are some additional factors to consider for autistic people. We may be more likely to experience ‘face blindness’ and have difficulties recognising individuals. We often have strengths in focusing intently on specific topics of interest, we may experience perseveration and a reliance on routines and rituals that help us organise our worlds. This could be responsible for some autistic individuals becoming excessively focused on diet, calorie counts, or exercise regimes. It may make breaking habits that are harmful towards our bodies more difficult too. An autistic person’s sensory processing may impact on their body image as well.
From a sensory perspective, I’ll explore my own experiences and reflect on how they have affected my life.
This has a significant effect on my relationship with my body. My muted sense of where the various parts of my body are in relation to each other means I am frequently misjudging doorways and bruising my arms in the process; I trip over my own feet; and I lift and throw with totally the wrong amount of force required. I find negotiating stairs and escalators very tricky, and if I can’t see my feet, I may as well not bother.
These type of proprioceptive experiences are well documented in accounts from autistic people. They undoubtedly impact on my self-esteem. I am not graceful, or elegant; ever. I don’t dance in public, I’m rubbish at sport, and even walking across a room requires the same kind of internal self talk one would say out loud to a blinfolded person navigating the same route! What I think and feel about my body is never particularly positive. My perception of where my body starts and ends is muted too. I recently cleared out my wardrobe and found a coat that I had bought. It was way too big. In fact, it had always been too big and my husband recounted how I have always bought clothes of the wrong size.
The image I have in my head of my size is not accurate. Not just in the fairly typical way many of us look back at old photos of when we were younger and slimmer, and wish we were as “fat” as we thought we were back then. But in a very genuine way where I have no idea whether I will fit through gaps between cars in car parks, or be able to choose which clothes size to try on in a shop. It is not just a self-esteem issue where I exagerate my weight, but a fundamental difference in how my senses work. I have no idea what size I am – and all those other factors like peer pressure, the media, my health and relationships play into an already wobbly body image.
Knowing how I feel inside, and which emotions I am experiencing, or what my body is telling me I need to do – eat, rest, go to the toilet, and so on – these sensations are frequently muted too. I don’t know if I like you, I’m not sure if I even like me half the time either!
Until recently, when I looked in the mirror, or at a photograph, I had no strong sense that the image was of myself. I remember as a child thinking deeply about what makes people separate from each other. I must have been around seven years old (because I remember the exact spot in the exact street where this ‘revelation’ hit me) and it struck me that I was everyone else and everyone else was me. I cannot put it into words accurately, but it was an incredibly powerful experience. When I reflect on it, I still can’t quite capture what it was that I had discovered, but I know it is something to do with interoception and identity. I had incredibly clear ideas about who I was – I always did, but they were logical, thought-based, and completely detached from any feeling of who I was. I could have been anyone – where did Emma start and end?
This year I taught myself how to recognise myself. I had already begun a process of reflecting on photographs and noticing in a very mindful way that they were of me. I also built up to the point where I could see myself on camera for the inevitable conference calls the Covid-19 pandemic has forced us to partake in. It was a painstakingly slow process, but I can now watch myself in a short film. Prior to this, I was filled with dread, horror and nausea whenever I saw myself. I could not connect in any way with the image in front of me and I found it terryfying that a stranger was saying my thoughts out loud, or was wearing my clothes.
I have embarked on a process of learning about my interoception. I need to take it slowly. Recognising my emotions and bodily functions as my own, feels as terrifying as when I recognised my outer body as my own too. On both occasions I experienced a massive sense of overwhelm in the days and weeks after my sensory renaissance. A mixture of novel delight, fear, and wonder. Mixed with an almost painful sense of self-awareness. It felt important to gently nurture this and not push myself too hard.
My other senses play an important part in creating my body image too. All of us experience the world through our senses. When acting ‘normal for me’, my brain processes this sensory information in muted or intense ways, compared to typically developing people. When I have additional sensory, social, or cognitive demands to process, my sensory processing can become even more extreme. This means that my world feels inconsistent, unpredictable, and disordered.
The way my brain processes the visual information about how I look varies from day to day. Some days I can smell myself strongly – particularly if I have been unwell or terribly upset. I give off a distinctive chemical body odour. I can frequently hear my heartbeat and the blood rushing through my body. My sense of touch is hypersensitive, and I flinch at a light touch. This makes me upset because it appears like I am rejecting the very people I wish to seek comfort from. All of these factors influence how I perceive my body and how others perceive me. This impacts on how I am treated and how I respond to others too.
No reflection on body image would be complete without discussing food and eating. My gustatory processing works in such a way that I have very particular needs when it comes to flavours, textures, and combinations of foods. I have written about autism and food elsewhere, but in brief, I tend to prefer certain colours of food. I lack the imagination to think up original meals and tend to opt for familiar foods. My sense of taste fluctuates, and I can find particular flavours are so extremely unpleasant my body reacts as if I have been given poison!
My need for routine and familiarity (in order to calm my chaotic world) can result in restricted diets. My anxiety and sensory processing can encourage me to avoid mealtimes. As a teenager, my poor executive skills led to me being disorganised and eating quite a limited diet. This resulted in weight loss and poor health. My energy levels frequently soared then crashed in response to my unhealthy eating patterns. This probably had an effect on my emotions and self-esteem too.
Each of us will experience a complicated mix of factors all interplaying to help influence our body image. Our internal and external body awareness will give us a ‘sense’ of our bodies, and our thoughts, beliefs, and feelings about this will play a part too.
As autistic people we may experience additional influences on our bodies – in the form of our atypical sensory processing, and our need for routine, ritual, and repetition. We may intuitively know how to regulate our senses and emotions too. This may be in uniquely autistic ways. Many autistic people find repetitive movements, sounds, visual images, and other sensory input is fantastic for helping with focus, relaxation, stress relief, and joy. These activities can bring a sense of peace and predictability to our bodies and make them feel ‘safe’ and ‘connected’ to our whole self. This is certainly my experience anyway. Unfortunately, these activities may be seen as inappropriate, or a subject for teasing, scorn, or punishment.
Imagine living in a body that feels clumsily out of your control; that shifts its shape from day to day in front of your eyes; that reacts physiologically to the ebb and flow of a restricted diet and rigid exercise plan; and recoils uncontrollably from flavours or touch.
Go back to my opening questions. Is that body a place that feels safe to you? Is it an ok place to be? When what you ‘know’ doesn’t match what you ‘feel’, because you feel nothing but know everything – are you sure it is even you in there?
Is it surprising that so many autistic people are diagnosed with eating disorders, or self-harm, or are vulnerable to abuse? How do you even consent to another person entering the space of your body when you don’t know where that starts and stops?
I’ve heard this said quite a lot – particularly since my diagnosis. Firstly I’d like to say “Thank You” to the people who have said it. I mean that sincerely. This has been said to me when people have been empathising, or trying to relate to my situation – it has even been said to soften the perceived blow of having a ‘disabled’ child. I am heartened that people want to put themselves in my shoes and I hope they bear with me and read this blog; reflect on other ways they can show their solidarity, and continue in their commitment to understanding autism.
Receiving a diagnosis of autism is a complex process. The diagnostic criteria is based upon clinicians identifying certain traits, experiences and behaviours, and all sorts of biases may come into play. This may be why certain groups of people are under-diagnosed or misdiagnosed.
In my opinion, the assessment criteria for diagnosing autism is based on stereotypes and deficits and could benefit from being updated. People who don’t fit those stereotypes, or are skilled in adapting to their atypical experiences of the world can easily be overlooked. However, there are some skilled clinicians out there that understand “why” autistic people do what they do and they are able to delve deeper and unpick all the various complexities of the person’s experience and identify whether autism is in fact the correct diagnosis.
Whilst every autistic person is unique and completely different to the next autistic person, we all have one thing in common. We have always been autistic. Autism is lifelong. No one becomes autistic as an adult, and there will be evidence of autism right from the very start.
So are we all a little bit autistic?
No – we’re not. But we do share some experiences and behaviours. There is plenty of stuff about autism that is relatable to people who aren’t autistic. That’s why I enjoy using analogies to share my experiences.
If I described my atypical sensory processing, sensory overwhelm, and my need for adjustments in a scientific or medical way, it’s likely that you might see me as very different from you. That’s ok – I probably am. But if you can relate to a scenario such as this one then you may begin to ‘feel’ what it’s like for me as well as understanding why I’m different.
Picture this: You’re driving around in your car looking for a parking space and it’s raining, the radio is blaring out, the heater is on and you’re way too hot in the car. You’re thinking about that appointment you need to attend and what you’re going to say, and you’re not sure if you’re wearing the right clothes, and you can’t see an empty parking space. The windscreen wipers are swishing back and forth on maximum speed, and even though you are leaning forward and screwing your eyes up, you just can’t see where you can park. It’s all beginning to feel a bit much. So you turn the volume down on your car stereo and turn the wiper speed down – suddenly it becomes easier to find that parking space. You’ve done nothing to improve your vision, or the parking space detecting ability of your eyes, but the drop in volume means the overall processing your brain has to do of all that various sensory information is reduced and it becomes easier to focus. That’s similar to the level of overwhelm I often feel and why I need to have peaceful, calming environments to live in.
If you find that scenario relatable it doesn’t necessarily mean you’re autistic – but it demonstrates that all our senses work together and reducing input in one sense when we’re becoming overwhelmed may prove beneficial. It also demonstrates that when we are under pressure, sensory information may feel more acute or distressing. It gives a feel of what my ‘normal’ feels like and when people understand that, it is more likely they’ll be compassionate and accommodating rather than seeing me as ‘different’ or ‘other’. If they bump into me in town and see me starting to “look like a meerkat” as my husband and son (affectionately?!!) refer to it when I have to go into a big shop with all the lights, temperature change, music, smells and escalators, maybe they’ll not think “look at that lady acting weird, standing tall and alert like a meerkat on guard duty” but “I wonder if she is finding this overwhelming like I do sometimes and what can I do to help?”
So yes, we have things in common. But as I’ve elaborated on in an earlier blog – just because my husband has backache and is tired at the moment, it doesn’t mean he is pregnant. Or even a little bit pregnant. It just means he can relate – and that’s a good thing.
I find this diagram helpful for explaining the autism or autistic spectrum. The spectrum is not linear like the top image, it is more like the coloured wheel image below. I perceive non-autistic people as being a bit obsessed with hierarchies and linear things. I’m sure that individually people aren’t, but our society seems to enjoy ranking stuff – whether that’s a school’s league table or a football league or on a talent show – it happens all over the place. I’m a great lover of categorising things myself, but my default setting is not usually based upon the typically perceived norms of what makes one thing better than something else. It all feels a bit judgmental and you miss so much beauty in the world when you rank stuff and only focus on the “best”.
The trouble with having a spectrum with ‘mild’ at one end and ‘severe’ at the other is it’s total rubbish. Simple. You can no more be mildly autistic than you can be mildly gay. You can’t be severely human. Or a little bit on the French spectrum. It just doesn’t work like that. The characteristics and experiences autistic people share come under various categories and each person is affected differently by them. A person who has no verbal language skills with highly developed motor function will experience the world and be treated very differently to a person who is highly articulate with poor coordination. Each has their own challenges and strengths. Both are autistic and it feels difficult to say which of them is more severely affected by their autism. One can climb a mountain – one can make a phone call. How do you rank that? You begin to realise that the severity is nothing to with the person at all – but is to do with the situation or environment they are in. The social model of disability becomes far more relevant than the medical model we are more used to. The person hasn’t changed but suddenly when other people’s attitudes or their environment becomes more accommodating, they become less disabled.
Personally, I’m not too bothered when people try and relate to me by saying they are a bit autistic too. I have other battles to fight and if I tell them not to say it, I’ll reinforce that I’m pedantic. I want to build bridges between people, but I’d rather they didn’t say it though. I find it a bit annoying because it is inaccurate – and believe me, when your ‘normal’ world feels as chaotic as mine does, you need at least a few things to be ‘right’, ‘clear’, ‘accurate’ and ‘consistent’.
Many autistic people, myself included, have had a lifetime of knowing we are different to our typically developing peers. Some of us have believed – and been told – that we are ill, damaged, or wrong for being how we are. For some autistic people their diagnosis has validated their identity. For me, it has given me the freedom to be myself and the confidence to reject the incorrect labels others have given me or I’ve believed about myself. Some autistic people are loudly proud of being autistic. Hearing others saying they are a bit autistic too may feel invalidating or belittling of the very real achievements autistic people make every day in just getting by in a neurotypically biased world.
Many of my blogs end with a reflection on what we have in common. This is important to me because most of all, I am human. I have every right to exist – regardless of my neurology. My diagnosis has not just validated my identity as an autistic person but as a woman and a human being too. There is something very wrong when people wonder whether they are in fact a true human being – just because they are autistic.
I want to relate to other people and understand how their world works for each of them – I have spent my lifetime doing this and sometimes I try to copy, or pretend to understand so that I fit in better (this can be called ‘masking’ in autism, and I’ve blogged about it). I’d like people to have the same enthusiasm and commitment towards understanding the autistic world as I have towards understanding the neurotypical world. We need to recognise our shared humanity. Seeing people as “other” – whether that is in generalisations like ‘autistic people are like this’ or ‘all neurotypicals are like that’ is a dangerous road to go down. The rise of right wing politics across our planet scares me and we should take heed of what we know about how things like prejudice, stereotypes and discrimination work. Dividing people into “us” and “them” rarely leads to inclusion, equality and peace. In our own lives we can explore how to work together and see the shared experiences and use them to relate to each other better, whilst accepting we are all different and we all need different things. And that’s why human beings are so awesome!
I had never heard of this phenomenon until last year. I was having a discussion with a professional who works on the local NHS Autism team, and she asked if I wanted to have a look at a questionnaire about camouflaging and masking. I thought why not, and promptly set about answering the 25 questions. I emailed my response back and was delighted to hear I had scored really highly on all areas! “Well, I’m clearly not as autistic as I thought I was, I knew I’d get a high score because this is all obvious stuff that everyone does all the time. See I’m as normal as the next person”. I thought to myself.
My high score wasn’t because I’m not that autistic, in fact it indicated that I mask almost all of the time and this is a very common experience in autism. I was beginning to feel uneasy. I had realised I was autistic by then but wrongly assumed the ‘autism spectrum’ people talk about was a linear thing with mild autism at one end and severe autism at the other. I would probably be a little bit autistic – because I work, I have a family, I function well enough to convince most people I’m normal. And I’ll forget about all that other stuff; the never fitting in, the always knowing I was different, the misdiagnoses and failure to reach my potential – that’s probably all because I’m just such a crap person! Of course, it is not like this at all – you can no more be mildly autistic that you can be a bit gay, or slightly pregnant. The spectrum is a collection of different elements, aspects and strengths and every one of us who is autistic, has their own unique combination of these. And everyone that isn’t autistic is not on the autism spectrum.
The questionnaire was scored in the areas of compensation, masking, and pretend social ease. Until this point, I had assumed everybody pretended to be normal all the time. I realised that some people were more ‘normal’ than others, but I had no idea that there was even such a thing as masking. I still cannot comprehend how neurotypical people operate in terms of social interactions, so watch out those of you who know me, I plan to find out and will probably question the hell out of you!
Types of masking.
There are lots of different ways autistic people cover up their autism and its worth having a read of other people’s experiences . I’ll touch on three elements of camouflaging and my choice of terminology has no great thought behind it and is not a definitive explanation – to be honest, much of the language used in research and accounts of masking feels a little judgmental to me – it suggests ‘normality’ and deficits :
Compensation – this includes all the tricks and tips I’ve taught myself (and others) over the years. The techniques for making realistic eye contact by looking at the person’s mouth instead of their eyes. I had the added bonus of having regular investigations and treatment for hearing problems as a child, so my lip reading was positively encouraged. A few years ago, I considered writing a book for autistic people about how to get by in life. I had worked as a manager of a residential service, with a woman who had been in the care system since childhood and had a whole host of psychiatric and behavioural diagnoses. I supported her through assessment for Asperger’s (as it was known back then) and when it came to my work appraisal she wrote some feedback that said “Emma is really good at teaching me the tricks of the trade”. I was delighted at this – not least for the compliment, but for her accurate use of complex language. In fact, I was the one who said to my line manager “What do you think she means by that Karen?”
Masking – this includes hiding my distress, confusion, and difficulties whilst pretending all is well. I have spent my life feeling as if I have been winging it, and I am often only moments away from making myself look totally stupid by asking a question that everyone else intuitively knows the answer to. The further in my career I have gone, the more I have had to mask. Every time I hear a new piece of business jargon I have to look it up so that I can keep up with the conversation. I have to suppress my need for clarity and my desire to blurt out “Why are you talking such utter nonsense?!” But pretending I know what is going on isn’t always helpful. I’ll give you one of my embarrassing moments:
I was sat in the board room in a very serious meeting and the person talking used the phrase “the elephant in the room”. Now, I absolutely knew this was not to be taken literally. An alarm went off in my brain that said “idiom/metaphor/figure of speech alert”. So I used my quick thinking brain to whiz through everything I knew about elephants to try and work out the meaning. Elephants are big – are they talking about something that is big? Elephants have big ears and a trunk – no it can’t be to do with that and stop it Emma, do not go off on a mental tangent about the different types of elephant and their respective physiology. Elephants never forget – aha, maybe it’s to do with memory or remembering something. What else do I know about elephants?….And then the question came: “Do you have any thoughts on that Emma?” And I realised that I hadn’t got a clue what was going on, or what the question was, and I couldn’t even grasp at an answer out of thin air. The conversation had moved on and I was lost in the world of Proboscidea. I was probably the only person in the room with the taxonomic knowledge to name the order that elephants, mammoths and mastodons sit in – and I was probably the only person in the room feeling stupid, anxious and lost! And all because I didn’t want to make myself look stupid for not understanding something. I challenge you to spend a day in your workplace or school considering how complex language is if your default setting is to take things literally.
I also mask my need to move about or do anything that ‘looks’ autistic. I find moving is very regulating, it helps me concentrate, focus and come up with ideas – all the sorts of things employers and teachers encourage. But it would put me in the firing line of ridicule, misunderstanding and people would assume that there was clearly something wrong with this otherwise bright and articulate woman who can’t keep still and behave ‘properly’.
Assimilation – I never felt like one of the girls at school but I knew my life would be easier if I pretended to be like them. I learned about boyfriends by listening to what other girls had to say and joining in the conversations as best I could. I was not attracted to boys at all as a teenager and I wasn’t attracted to girls either. I learned the language of relationships but had no idea of the meaning of some of the terms (‘getting off with’; ‘blow job’ etc). You’ve read how my brain works when I described the elephant in the room – go figure! Many of the girls at school read magazines and studied and giggled at the problem pages and articles on how to know if a boy fancies you and how to flirt and so on, so I joined in and copied. This was useful because it gave me some proper concrete information on how to have relationships with boys and made me appear to have something in common with my peers. I wasn’t interested in having a boyfriend but knew it was a normal part of growing up. I worked on how to flirt and how to tell if a boy was interested in me but unfortunately put so much energy into ‘getting it right’, I never considered consent or whether I wanted to go out with them. I can’t remember having feelings towards other people as a child, sexual or otherwise. I didn’t like or dislike people. I didn’t look at someone and find them attractive. My sister covered her side of our bedroom with posters of pop stars and my friends talked about boys they fancied and got excited when certain actors were in films. None of this did anything for me at all. I bought a small photo in a frame of George Michael in Speedos, because Wham! were very popular back then and I knew it would be easier if I said I liked someone. The photo sat on my bookshelves whilst I lived at home and was my attempt at fitting in and somehow feels a rather ironic choice now – gay and dead! RIP George x.
Don’t we all mask?
I assumed everyone masks. I know for a fact that my old line-manager swears her head off outside of work but was always totally professional within her role as a director. I know that it would be rude and feel hurtful if I replied honestly when someone asked if I thought they looked good in the item of clothing that I thought looked dreadful on them. I know that you cannot go through life being impulsive and doing and saying whatever you want at the expense of others. So isn’t masking something we all do?
I’d argue that it is not. Those things are the normal day to day, not being an asshole type things we do because we are sharing this planet with each other and need to get on. Kindness is essential, even if it is frequently overlooked and undervalued in our society. Kindness comes first for me. If I choose the kind option then it may mean I modify my behaviour or instinctive response. I may need to hold back and rephrase my honest response into something diplomatic and kind – but I can still be true to myself and be honest. Assertiveness is a good way of being true to yourself because you still meet your own needs but also meet other people’s needs too. I will compromise my behaviour but not my values.
So what is different about autistic masking?
Quite simply. The cost.
Masking your autism always comes at a price. And I have paid with my mental wellbeing. The costs are twofold. The direct mental health costs of camouflaging are exhausting. Whilst I’m concentrating on getting my eye contact right, I’m using valuable capacity that could be used for answering the question or thinking. And the continual anxiety of whether I’m getting it right wears me down emotionally and cognitively. The indirect costs are things like low self-esteem from getting into all sorts of scrapes while pretending to be normal, and not feeling sure of who I am and whether I am an ok person or not, as I feel I’m living a lie.
It erodes my identity because I’m not sure which bits of me are truly me. If you ever share doubts about your identity with mental health professionals, it can indicate various psychiatric conditions and personality disorders. Misdiagnosis of autistic people is common and once a label has been given; every trait, behaviour and experience may be interpreted as part of that labelled disorder – this further erodes the sense of identity and creates a sense of being damaged or ill. It also creates a sense that you can somehow get better and recover. Autism is not an illness and recovery is not going to happen. Living a fulfilled and valued life can happen though, but in my opinion is unlikely to whilst you perceive yourself as broken and needing to be fixed.
The knock-on effects of mental health treatment can further affect your wellbeing. Stigma, discrimination, and side effects of medication are just three of the many ways this can happen.
Another effect of masking is that you don’t regulate your emotions or senses when you need to. All those times I stop myself from moving about to regulate myself, I stay dysregulated. All that energy that goes into keeping still or not reacting to whatever it is that is causing me to become overwhelmed further increases my distress. And no one knows. That is a serious issue because if no one knows how distressed I am until I absolutely have to show it by either falling apart or completely switching off (some people would describe how they experience meltdowns or shutdowns) then I will look like I overreact. I struggle to identify and verbalise what I am feeling anyway and if I am hiding what my body is telling me I need to do to feel better, no one can ever help me. Also, the idea that so-called ‘high functioning’ autistic people don’t do all those autistic things is reinforced – which is unhelpful and inaccurate. The same is true of not asking for clarification, or time to process information – my needs go unnoticed and therefore unmet.
Regular masking means you may never learn decent coping strategies because no one knows you are not ok. Then when something happens in life that is difficult, traumatic, or distressing, you have no idea how to cope.
Should I take off my mask?
Or even could I? Or do I want to? Yes, I would like to be more “me”, but that doesn’t mean going about my day impulsively and insensitively doing what I please or saying whatever comes into my head. I have a choice in much of what I do. I do not have a choice in how my senses work or how my brain processes information. I will react strongly to a loud noise because my body and brain think I am in danger and no amount of me telling myself otherwise will change that. I will take things literally, or not be able to read between the lines sometimes. I do have a tendency to be honest and upfront, and my brain will opt for the honest answer every time, regardless. I cannot choose how I react to all of these things and sometimes other people need to be more understanding and patient. Where I can choose how to react, then I do my best. Or if I’m having a bad day, I’m a pain in the backside – just like everyone else can be!
I have been very fortunate in having a career where I have had some excellent mentors, role models and line-managers. I trained to become a registered manager by taking part in a scheme where I had placements in a range of different care services under a number of different managers. I used my excellent skills at masking to observe, analyse, copy, and practice the management styles in each placement and gradually hone them into my own style that worked for me. This is where my ability to mask has been a huge benefit. I wasn’t doing it to disguise something, but rather to try out what worked for me so that I could become a good leader myself.
So I don’t necessarily need to stop masking. On occasion it can benefit my mental wellbeing because it enables me to learn skills that are good for my personal development. It enables me to ‘test out’ how to behave in certain scenarios. It helps me learn rules for behaving in particular situations.
However, it is essential that I have balance, and any period of masking needs to be balanced with times of not masking. For me, camouflaging for lots of the time is not sustainable. I am blessed with having people and places that require the minimal amount of covering up.
What am I masking?
I am similar to many autistic people because I compartmentalise things. The world is so chaotic and unfiltered, the only way I can cope is to divide it all up into bits that have their own rules and explanations. That way I can function day to day because I have less to work out. If I am at work, I know how to behave in an appropriate way. If I am in the village shop, there’s another set of rules to follow as far as conversations, behaviour and social interactions are concerned. I can even cope with people being in a number of a categories – living in a rural village, it is quite normal to see people in a number of their roles – my conversation at the GP surgery is very different to my behaviour when I see my GP at a concert we are both playing in. This works well for me until people pop up in the wrong places or the rules change! It enables me to mask better too. I can have a mental phrase book of small talk for the shop, small talk for work, chats while dog walking and so on. I am more comfortable with defined roles and tend to have more meaningful relationships within boundaries. I know how to pretend to be whatever the particular type of ‘normal’ is in any situation. It helps me predict and I feel more confident.
The trouble is, this reinforces that very disjointed sense of who I am. It adds to the questions I have about my identity and what is authentically me. I have needed to join up my compartments a bit more so that I feel more whole. I am not just autistic Emma or wife Emma or mum. This also makes me question again – what is it I’m masking? Where is the autistic bit? Of course, there is no autistic bit in the same way as there is no female bit of me or British bit. These parts of my identity run through every part of my being.
How do I take off my mask?
When I was first diagnosed with autism I went through a process of revisiting every experience in my life and viewing it through the lens of my autism. I looked for anything that was out of place (how very autistic of me!) and I could not find one single example that would show I was not autistic. Things that had puzzled and frustrated me about myself for years became crystal clear. I felt liberated. I felt that I wanted to be proudly autistic and why should I hide? I felt like I wasn’t autistic enough because I was so good at hiding it, and maybe I should try and act a bit more autistic? But I didn’t really want to. I wondered if I was properly autistic because I don’t do lots of stereotypical autistic things. Was that because I was ashamed? How the hell do I be this authentically autistic version of me?
I thought all around this subject and could not get my head around it at first. But like so much of my processing, it took time and involved taking the long way round and detouring off all over the place. I concluded that my need for compartmentalising everything was holding me back. The autistic bit of me is all of me. When I masking, I’m still being me. When I am being a pedantic, annoying know-it-all that won’t stop telling you what it is I need to you to absolutely know, right this minute, that’s me too! The totally scatty, unable to organise her own lunch woman – that’s me. The hyper-focused, innovative thinker that solves problems others can see no way round – that’s also me. The cowering from the sudden noise Emma is the same Emma that stands up confidently in front of people and shares her knowledge. The woman pretending she’s ok because she doesn’t want to let on she hasn’t got a clue, that’s Emma. And so is the woman who stands up for others and tells the truth regardless of the effect, because it is the right thing to do – it’s all me.
When should I take off my mask?
I am not letting myself down or failing to be authentic by masking. How dare others judge me for coping the best I can. Particularly when the risks of not masking are so dire – ridicule, discrimination and misunderstanding. And how dare I force myself to act in a way that doesn’t sit right either – be that through masking or not masking.
My wellbeing is important. If my masking affects my mental health in a negative way then it is clearly destructive and I need to reduce it. But that’s not just down to me. I may decide “Fuck it, I’m going to flap my arms about next time I need to in a meeting as I’ll feel much more able to concentrate”. That will not go down well – regardless of the rights and wrongs of it.
Do I have the right to? Absolutely. If I had a different disability then it would be accommodated. No one says deaf people can’t move their arms to communicate through signing, because it looks funny and might upset the other people in the room. Do I need to be the warrior out there being authentically autistic so that stigma is challenged? That’s up to me, but no, I don’t have to be.
What would help though is better understanding. Being sensitive to the needs of autistic people and creating more accommodating environments that don’t create sensory overload. Using language that is clear and not open to interpretation. Giving people time to process questions instead of asking again in a different way and thus doubling the amount of processing. If autistic people were properly, compassionately and genuinely listened to, all this would be clear – I am not saying anything out of the ordinary. If people acted in this way then I wouldn’t need to ask so many questions or regulate myself as much. If people got to know me and understood my values and recognised that although I may seem serious, I have a good sense of humour and although I may seem unemotional, I am passionate about many things. Then, when I do say the wrong thing or act in the wrong way, they’ll know it’s just Emma being Emma and she doesn’t mean anything harmful by it.
How will this look?
Living authentically, is about living. It’s the journey not the destination. The world is not ideal so it is likely I will always have occasions where camouflaging my needs is preferable to meeting my needs publicly. If I choose to mask, that’s fine and totally authentic. If I can’t help myself from masking or don’t even know that I’m doing it because I’m so used to it, then that is clearly authentic too. Masking is never a sign of failure. Aspiring to not mask is not essential – the world gives autistic people a hard enough time without us giving ourselves one too. I have more acceptance of myself because I have more understanding – and that means I feel more in control and more able to choose how I live. Will I apologise for needing to meet my own needs and regulate myself? No. Will I ask more questions when I need to? Almost definitely. Will I do things that make me feel self-conscious? Probably not. Will I compromise my values or lie? Never.
But how will this work for everyone else – if I have considered my part then what about you? If you are someone who has good social skills and understanding then do you really have to insist that someone who is uncomfortable with eye contact looks at you? If you are good at all that stuff then why is it not you that is changing your behaviour? If you understand something and someone asks a ‘stupid question’ then why not be patient and explain rather than show your frustration. If you are puzzled by another person’s sensory experiences then why not enquire in a gentle way so that you can adapt and adjust so that they feel as comfortable as you do?
I don’t purposely do things to make other people feel uncomfortable, but I can’t tolerate bullshit either. The world feels very different at the moment and I’m pleased to see people acting in a less bullshitty way. It is good to see that we all wear casual clothes at home when we are on our work conference calls. It is good to see that many of us have pets and children that are important to us and what we really like is having a walk or sitting in the garden. When the ability to shop, spend and consume indiscriminately disappeared, many people re-evaluated what was important to them. Why not make understanding and accepting each other more, part of that?
I’ve always known I am me. I’ve also always known I am different to many other people. It has been hard to put my finger on it. As a young child I wondered whether it was because I was too clever – I was thriving academically at primary school – this was before my experience of the education system went terribly wrong! Or maybe I was an alien because I certainly didn’t seem to be on the right planet at all. Or perhaps I was a psychopath who was manipulating everyone she met with her constant conscious processing and analysis, and superficial charm that enabled her to pass off as normal when she very clearly wasn’t.
Of course, it became apparent that my difference is very real, but also very easy to explain. I am autistic. I have always been autistic and I’ve viewed hospital notes from around the time of my birth and listened to my parents accounts of how I was a slow feeder that didn’t like being held or comforted. In fact, there is nothing in my life’s events that cannot be accounted for by my autism and these early accounts of my atypical sensory processing are the start of a lifetime’s worth of examples of how my differences have created opportunities, challenges, misunderstandings, joy and normality for me.
Unfortunately, I did not know I was autistic for a very long time. I only knew I was different. I did my best to try and fit in and the resultant masking of my autistic traits played havoc with my wellbeing. Deep inside, I felt that I was probably ok – how could I not be? I was kind, I was thoughtful, I always did my best, I tried hard. But I also related strongly to the little boy in the Hans Christian Anderson story ‘’The Emperor’s new clothes”. Was I the only person on the planet who could see what was actually going on? Why when I helpfully pointed out mistakes or inaccuracies or called people out on the bullshit they were preaching, did they act as if what I saw was wrong? Why in this world where I had been brought up to be truthful was I being told to buy into the lies? My sense of probably being ok was gradually eroding into a sense of there being something fundamentally wrong with me.
Again, I struggled to put my finger on what it was that was wrong with me. My sensory processing is not typical of many peoples and I don’t experience things like a gut feeling or awareness of my gender, sexuality or even my likes and dislikes. Everything I “know”, I know in my head. I am female because I have a female body – I have no ability to comprehend what trans people mean when they say they know they are in the wrong body because I have no idea whether I am in the right body or even on the right planet! I am heterosexual because I love my husband and am attracted to him, however I do not even look at other people and sense attraction towards them because that would go against my commitment to my husband who I love deeply. I eat the food that annoys me the least and that I can tolerate in my mouth. Growing up I also knew that I didn’t “get” lots of the stuff that other people intuitively got. My attempts to understand and soothe myself took me down a variety of constructive and destructive paths and some of those led to long-term involvement from mental health services.
I have tried fitting in with a variety of groups of people, medical diagnoses, philosophies, and beliefs throughout my life much as most people do. The desire to know where we belong seems universal throughout humankind regardless of neurology or any other part of our identity. Although I developed an ability to camouflage my autism, I always knew when I wasn’t being genuinely me. My lack of a gut feeling doesn’t mean I don’t notice things, only that I notice in a different way. People use the expression “like an alarm bell going off” and I understand why they use that metaphor. When I meet someone or go somewhere and things don’t quite fit as they should, I experience an uncomfortable, edgy, clanging, noisy sensation that warns me something is definitely not right. I get this feeling when I meet people whose words and actions demonstrate different sets of values. It is more than the usual difference between the two that most people show in normal day to day behaviour – the typical modifying of our behaviour to act appropriately in a variety of situations – not being rude or insensitive and so on by kerbing our urge to swear or tell the truth regardless of consequences. This is something fundamentally different that sets off alarm bells for me. The contrast is as out of place as a spelling error on a typed page or a tiger showing up in my local woods. It is a concrete mismatch that is quantifiable and nothing to do with feelings. I know it (in my head).
I also “know” absolutely solidly when something is correct. I know my autism diagnosis is correct because I can (and have!) matched every single scenario in my life against that fact to test if it is accurate – and it is. And that is how I have come to write this blog. I have more of a sense of how I am as well as who I am. The label is so correct, I forget I am autistic a lot of the time, in the same way as I don’t consciously consider myself British or female or Caucasian as I go about my day. These things only matter when I am facing advantages or disadvantages based on these parts of my identity, the rest of the time they are irrelevant.
Gaining the correct diagnosis has righted a lot of wrongs, particularly with regard to incorrect psychiatric diagnoses. The hardest wrongs to right have been the labels I have attributed to myself, based on the lies I have believed that others who have misunderstood me have said about me and to me. The process I have been through post-diagnosis has been intense and all consuming at times.
It has left me with a sense of freedom to move on with my life. I am solid in my identity – I have always been me all along. The mislabelled bits were still me, the camouflaging bits were still me. I have desperately tried to unpick and categorise what is autistic me and what isn’t. How should I be authentically autistic, how do I unmask? I want to be able to be myself and act in a way that is more noticeably autistic at times e.g. by asking for people to adjust the volume or lighting in a meeting or to be able to regulate myself in whatever way works without feeling ashamed of flapping my arms about or bouncing up and down. I question whether I am too damaged, or too untrue to myself, or whether I am ashamed of my autistic identity because I can’t do these things comfortably. I am not. Every single bit of this is authentically me. No one is purely their neurology, no one is only their gender or their job title or their sexuality or religion. We are a mixture of all of these things and to try and stick the autistic bit in a separate category just doesn’t work for me.
I have seen the jigsaw puzzle piece imagery associated with autism and I don’t relate to it personally. I am my own puzzle that is still being put together. I have no idea what the picture will be and in fact I have thrown the box away! My autism is not a piece that was missing, it is more like the glue that holds all the pieces together. It was there when the first piece was laid and will be there until my puzzle is finished.