My son started playing an online game called Clash of Clans, about two years ago. He had his first mobile phone and he and a few mates downloaded it.
We had a good talk about online safety and set about learning how to “chat” with other players. In fact I googled a list of text speak and abbreviations so we could decipher all the BRBR’s, CoC’s, and TIA’s.
But the chatting bit wasn’t for us and he convinced me to download the game too and join his clan. I thought it was a good idea so I could a) keep an eye on his safety and b) ‘get down with the kids’ – LOL – and find out what the attraction was with gaming.
Then there was c). Unintentionally I found I quite enjoyed playing, and it provided lots of opportunities for mother and teenage son chats about life, the universe and everything.
The game involves starting from scratch with a base that you can gradually build up with troops of different types, and defenses and resources. You take part in battles and as you win more loot and gain more experience you can upgrade your base and all its various archers, giants, wizards and dragons. You win more money and increase your magical abilities. You can spend your resources however you wish and shape your base accordingly.
And being a game, once you have accumulated enough experience and resources, you can level up. And with that comes tougher opponents to battle and higher stakes.
It’s very much like life. My son mocks the players he refers to as “rushed”. The ones who use real life money to upgrade their weapons while they are still novices and learning their battle skills. They are easy opponents to beat. Their bases look flashy with all the newest kit, yet weak and simple to penetrate and win an easy victory.
It’s a strategy game too – just like life. You can run at your enemy willy nilly, throwing your best bombs and shooting your best arrows and sometimes you’ll taste victory. Or you can plan and strategise and choose your battles and sneak in and win that way – or do all that right and step on a hidden bomb and lose!
There are no sure fire ways to win every battle. Preparation is important, but no amount of preplanning and picking your best troops will predict your next battle. My son and I often discuss strategy and technique, and the various analogies our game playing has with life. As a respected level 3 Master who reached those impressive heights with no cheat codes or spending of actual cash, I am worth listening to!
As an autistic person I frequently like to do things in the same way each time. It provides me with much needed predictability in this chaotic world I find myself in. It means I am wonderfully reliable, solid and consistent. It also means I can be metaphorically shooting my level one arrows when I’m fighting level six battles.
I still have my favourite old attacks and defenses now I’ve leveled up, but I have to ensure I adapt them to a more sophisticated opponent. If I keep on using my winning strategies from my early playing days now I’m in the Master league, I’ll look amateurish and rarely come out on top.
But I like my winning strategies from my early days. Life was simpler and enemies easier to predict. I want to keep using those winning moves. They served me well. They got me where I am today. Without them I would not be here now. But they don’t win me many battles anymore.
I’ve levelled up.
I need to learn new skills and different moves.
My son and I talk about how as autistic people this can feel tough. It’s like starting again from scratch each time we level up in life. Much harder than a computer game.
But with it comes new techniques, more resources, fancier strategies and greater opportunities.
We may be prone to keep on doing things the same way regardless. Sometimes I’m asked why I do things in such complicated ways, or why I always do things the way I do even if it’s not that effective.
Partly its the old message of “try harder” taken far too literally. Partly it is because it works – or rather it worked. But life sometimes moves on whilst I’m still doing the same old thing.
Sometimes I level up in life and don’t upgrade my skills in line with my progress. Mostly it is because it takes lots of conscious effort to work things out. There is always a logical reason for why we do things. Why change that? Doing things the same way is predictable and introduces a comforting, familiar pattern into an unpredictable and ever changing world.
We should be as proud of our life achievements as we are of our gaming ones. Finding that the old techniques no longer work could be a sign we’ve gone up a level. New opportunities are open to us and new resources are at our fingertips. It’s worth trying out some new moves.
I have no energy for masking at the moment and know that this means I will either appear totally unstable or I’ll muck up everything I have worked so hard to create.
It makes me want to give up as there seems no point.
Situations remind me that no matter how hard I try, how well I mask, and how fantastic my skills are – I am still really crap at being a neurotypical person. But I’m not neurotypical so why does it matter?
Because autistic people are not valued as whole people. My skills can be appreciated but the rest is still measured in deficits.
People assume I want to be more normal, or I’ll somehow learn to fit in. I don’t. I won’t.
I want the whole of me to be appreciated.
I often find neurotypical people dishonest, vague, inconsistent and tricksy. I still love many of them though. I accept I find those aspects of their persona difficult and confusing. I may not even like how they do things sometimes. Perhaps they occasionally annoy me. But I still love them and wouldn’t dream of writing them off as lesser, or as a broken version of me.
We are all perfectly imperfect human beings.
That’s why I’m fed up of being autistic today. I’m tired and overwhelmed and have no fight left. I get more tired anyway because my brain does so much more processing. On top of that I have to put all that effort into fitting in so I’m allowed to have a go at normal stuff like work and friendships.
My brain rarely rests. My body is usually alert to danger and ready to react.
Most people don’t realise this, and when I end up having to tell them so they’ll stop unintentionally hurting me, I feel humiliated and reminded of how the world is not designed for me.
That’s why I’m fed up of being autistic today.
So I’m taking it easy. I’m cuddling my dog. I’m taking care of myself and hoping tomorrow will feel better.
Self-care is the only way. I have a capacity for joy that others may never achieve. I seek out those sounds that reset my soul. I notice the patterns the rain is making on the window and trace each tiny droplet until it has my full focus. I read those comments that remind me I am not alone. I move in ways that reminds me I am in here – I have a right to be alive.
I rest, I recharge. I don’t plan my next battle. I remind myself that this neurotypically biased world is not of my making. I look at the birds and the trees and I reflect on the words of Mary Oliver. I remember where I belong.
Simply put, “video chats mean we need to work harder to process non-verbal cues like facial expressions, the tone and pitch of the voice, and body language” according to Gianpiero Petriglieri, an associate professor at Insead. Paying more attention to these consumes a lot of energy. “You cannot relax into the conversation naturally,” he says.
Many of us will also spend time awaiting calls; ensuring our technology is working; and that there are minimal distractions. This can add layers of anticipatory anxiety and stress to an already energy sapping process.
According to Andrew Hines, assistant professor at Dublin University, and PhD candidate Phoebe Sun; we can improve our video call experience by scheduling shorter meetings. A lot of what determines how fatigued we become is based on what we are listening to.
The voices transmitted through the internet in real time are unedited and therefore crude to our ears. That is why we can wile away an hour listening to a podcast interview but feel drained after a video meeting – even if we didn’t have to contribute.
Their article describes how subtle sounds such as key tapping and swallowing sounds will be captured and amplified through our laptops or other video call making equipment. Squeaky chairs, eating crunchy snacks and slurping coffee can sound to the listeners as if you are chewing in their ears. Our brains respond to annoying, unnatural and unexpected sounds and force us to focus on them. The ability to filter out information is significantly reduced due to the lack of spatial cues and the loss of our ability to recognise the direction of a noise.
Network delays can cause speech; gestures; and meta-communication – all those “Mmmm”, “Uh-huh” and nods of agreement, to become out of synch. Again, this adds to the video call experience being exhausting.
So what has this got to do with autism?
I enjoy writing about shared human experiences. From my very first blog back in March, I recognised the parallels the social impact of the Covid-19 pandemic may have with some autistic people’s everyday experiences.
I am sure that those of us taking part in frequent conference calls will understand the phenomenon of “Zoom Fatigue”. Those of us who are also autistic may well draw analogies with our usual face-to-face social interactions. I’d like to share my personal reflections on this to offer an insight into a world you may not have considered…
When I am in a face-to-face meeting I experience all the same challenges as many people do on a video call:
I cannot filter out background noise or recognise spatial cues.
My hypersensitive hearing causes me to focus on all those annoying breathing noises, the slurping of drinks, and the screeching of moving chairs – with equal intensity.
Awaiting meetings is stressful. This anticipatory anxiety boosts my already high levels of sensitivity even higher.
Eye contact feels overwhelming and painful. But unlike a video call, I can’t slap a post-it note across someone’s face to avoid looking at them!
My brain processes visual and auditory information at different speeds which can cause difficulties and a lag in my understanding.
Knowing when it is my turn to speak takes effort.
Is it any wonder that I am so exhausted after ‘normal’ social interactions? My challenges aren’t because I dislike people, or I don’t understand the rules of conversation. They are processing issues.
What helps is the same courtesy and good humour we have on conference calls. And an awareness that this may feel as clunky, awkward and never-ending to me as many of those video calls do!
Sexual consent is a complex topic. As an Autistic person I find it particularly difficult to define as there is no straightforward, succinct, universal definition that enables me to firmly place A,B, and C into the category of “non-consensual” and D, E, and F into the category of “consensual”.
As a mum, I am doing my best to bring up a child who is as safe as possible from potential mistreatment or abuse, and who understands how to behave kindly and respectfully towards himself and others. As my son entered his teenage years, I recognised just how complicated it is to teach someone “rules” about anything, let alone consent.
I went to the dictionary for my first definition of consent: permission for something to happen or agreement to do something. That is a fair enough definition but leaves far too many questions that my pedantically autistic mind jumps on straight away! It certainly doesn’t take into account the bigger picture where people are duped, coerced or threatened into giving permission to have sex. Or to be touched or touch someone else sexually.
My second definition was from ‘The Code for Crown Prosecutors’ – a public document, issued by the Director of Public Prosecutions that sets out the general principles that should be followed when they make decisions on cases. The definition they use is: Section 74 defines consent as ‘if he agrees by choice and has the freedom and capacity to make that choice’. The Code gives examples and elaborates on issues like conditional consent; intoxication by drink or drugs; and reasonable belief in consent. This felt like a more comprehensive definition to me and includes capacity as well as choice.
In my professional background as a registered social care manager, I have extensive experience of the Mental Capacity Act 2005 and how we assess whether individuals have capacity. The Act sets out 5 principles to consider when deciding if an individual has capacity to make a decision (such as consenting to a sexual act) and only applies to adults. The law is very clear that sex with a child is illegal regardless of whether they have given permission. With adults, there is always an assumption that the person has capacity to consent unless assessed otherwise. The Mental Capacity Act states: “a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.” Some people may lack capacity on a permanent basis, whereas others have fluctuating capacity that can vary from day to day. This could be because they have a mental health condition or are affected by medication for instance.
When risk assessing situations in my professional role, I have found that supporting Autistic people to take positive risks, where they have the same rights as everyone else to make mistakes or poor decisions, is complex. It can be fairly straightforward to identify sexual risk in a person who is vulnerable because of a very low IQ and severe communication problems that means they are unable to weigh up the information and make a decision. But when I am supporting people who are perfectly able to think through complex problems and access the same pubs, clubs and social events their non-autistic peers do, it becomes more difficult. I know from personal experience that my cognitive processing is adversely affected when my brain is having to process excessive sensory information. (For those of you reading this who aren’t autistic, imagine how it feels when you are trying to think about something important and your partner has their music turned up full volume on the radio – that level of not being able to think straight is commonplace for many autistic people all day every day.)
Many Autistic people need far less sensory input than our non-autistic peers do, for our brain to register the sensation – this means that typical background noise, light, and smells may feel intensely overwhelming. Other Autistic people need far more sensory input – this sensory difference is part of being Autistic. The types of venue where people often meet up to form relationships tend to be overwhelming on a sensory level. Possibly not a good starting point for an autistic person. And this is before we even factor in all the social demands, the reading of body language, interpreting whether someone is interested in you or not, or what you may or may not feel about them.
I’d like to take you back to the 1970s and 1980s when I was growing up. I learned about the biology of reproduction as a child. Like many children, autistic or not, it didn’t really make a lot of sense to me at first but following science lessons at secondary school I had a fair grasp of the mechanics of it and its purpose for reproduction.
It was many years before I appreciated that sex could also be fun, loving, exciting, a mutual experience and a choice.
I learned about something else in a school talk, although it didn’t mention sex at all. This was possibly dangerous and disastrous for many children. We watched a film about not talking to strangers who stop their cars and offer you sweets or visits to their house to see their puppies. I had absolutely no idea this was about sexual abuse at all. I imagine that many children would not have applied the messages of this film across other contexts e.g. someone that wasn’t a stranger grooming them for sexual contact.
I learned the playground language of relationships but had no idea of the meaning of some of the terms. Consider for a moment how Autistic people may have a tendency to interpret language literally. I am well aware that lots of spoken and written language has more than one meaning and I’ve learned lots of idioms and metaphors off by heart. However, I mask my autism quite frequently in order to look like I have some sort of a clue about what is going on! If I didn’t, I’d be asking questions endlessly, and I am well aware this can make me appear stupid, inattentive, or naïve – it singles me out as different. I hesitate to say it makes me vulnerable because it is not my fault that there are dangerous people who choose to take advantage of other people. It is their responsibility not to harm people.
I am less bothered by my communication differences as a middle-aged woman, but as a teenager I had enough problems already without adding to them!
Have a think of some sexual terms for a moment – take a step back from what you know they mean and just think about the words – it is ok to laugh about any potential disastrous misunderstandings!. I’ll give you an example to start you off. Words used to describe kissing someone passionately: Snogging, necking, getting off with, making out, French kissing, smooching. None of these can be interpreted in a logical and literal way to help you work out what you are actually meant to ‘’do”. How do you consent to something you don’t understand? Especially when you are putting so much energy into just working it all out.
Many of the girls at school read teenage 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. This was useful because it gave me some proper concrete information on how to have relationships with boys. I wasn’t interested in having a boyfriend but knew it was a normal part of growing up. I didn’t enjoy eye contact or close physical contact and I struggled to read body language and interpret other people’s emotions but at least these magazines gave me some tips.
I worked on how to flirt and how to tell if a boy was interested in me but unfortunately knew nothing about consent and I had absolutely no feelings towards anyone at all back then. It was a purely scientific approach to ‘getting it right’ and not based on what I wanted for myself. In all honesty I had no idea what I wanted, but was desperate to mask my awkwardness and lack of understanding. I had brief relationships and encounters with boys in order to avoid the scorn of my peers by not fitting in.
Of course, if people are having lots of relationships because they think it is what they ‘should’ do, they run the risk of appearing promiscuous. Peer pressure is inevitable for young people growing up. It is also very powerful – as is gaining a reputation as someone who is promiscuous. Autistic people have told me that they have developed reputations and attracted lots of unwanted sexual interest from others because they are perceived as ‘easy’. Instead of it helping them to fit in with their peers, they have felt excluded, labelled and their self-esteem has plummeted further. It can be common for autistic people to continue doing things in the same way, even if they don’t work. I blame this on our society’s focus on “just try harder”. If I am doing X in order to fit in, and it isn’t working, I need to try harder and do X even more!
NOTE: I was going to edit that last paragraph because my thinking has developed since writing it over a year ago. But I shall leave it as it is because it is good to see how you grow and develop as a person… On the surface it sounds OK… However – I no longer believe the narrative of Autistic masking being about “fitting in”. I have explored this in more recent blogs https://undercoverautism.org/2021/07/09/autistic-masking-lets-see-it-for-what-it-is/
Autistic people frequently mask or camouflage for the same reasons animals camouflage – to avoid predation. I act like my peers in order to not get predated. Or in order to take part. I don’t necessarily want to “fit in” – I want to take part as me – but without being harmed, abused and exploited.
Masking is a topic I have written about elsewhere. It plays a significant part in any discussion about consent. I wasn’t really masking my autism as such. For a start I didn’t realise that my awkwardness and differences were autism. I masked my needs. My need for clarity – by not asking the questions I needed an answer to. I masked my need for sensory regulation – by suppressing any desire I had to intuitively move my body in ways that were calming, soothing or helped me to concentrate or simply feel joy. I copied my peers way of talking and acting in certain situations in order to fit in better – mostly I was happy being a loner with unusual hobbies, I had a strong sense of knowing what I believed in and was interested in, but I also knew that if I looked any weirder than I already did, I would probably continue to be bullied and teased. I felt quite sad that people thought there was something wrong with me. My self-esteem was already low because I knew full well there was something different about me. I tried my best but was frequently bullied. This knocked my self-esteem down further. I tried even harder to get it right.
I will recap on the themes I’ve touched on above and relate them to the issue of consent.
Capacity fluctuates. Autistic people often find the world overwhelming, and the more overwhelmed we are, the more difficult it is to make an informed decision around consent.
Autistic people may take language literally. Any topic that is taboo (sex, death, finances etc.) has lots of euphemistic language associated with it that makes it even more difficult to understand. We may not generalise information very easily and therefore not realise that the ‘stranger asking you to go see his puppies’ is referring to a similar scenario as ‘an adult relative or friend of the family asking you to engage in sexual touching’.
Autistic children may try and avoid standing out as different from their peers by copying behaviour, doing what they feel is expected, or obeying adults.
Understanding body language, subtleties in conversation, flirting and whether someone fancies you is complex and easy to get wrong.
Educating people about consent and how to recognise and avoid situations and interactions where consent may become an issue
I have had discussions with my teenage son about consent and never pushed him as a young child to kiss relatives or accept hugs unless he wanted to. He knows that people may feel under pressure to conform in relationships – either to a partner’s requests, or a peer group, or societies expectations. It is a complex subject with no rules to fit all circumstances. My best advice to others has been, if the situation is not clear cut or you are not sure then don’t do it. Outside of a relationship where you 100% know the consent is there then it is better to regret not doing something than to do it and wish you hadn’t. Consent is about having a choice. If it doesn’t feel like you can choose or the other person can choose, then it’s not consent.
Teaching children to do what adults say because they are adults is not a good idea for anyone, let alone an autistic person who takes things literally. It is difficult to teach rules about sexual behaviour and how to spot potential abuse or grooming activity. The only thing I feel I can do as a parent is to be open and willing to discuss anything with my child.
Sex education needs to include more than biology. I believe that people are at risk because of a lack of the right knowledge about sex and relationships – it’s like teaching someone mechanics and expecting them to not get run over just because they know how a car works.
Sensory processing and consent
I was very vulnerable because of my lack of understanding of sexuality. I knew the facts but knew nothing about the existence of desire as a teenager. Our interoception (the sense system that lets us know how we feel internally) is significant in issues relating to consent. 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. I knew how to behave appropriately though. I was polite, I did what I was told, I obeyed adults. I also tried to “act normal” around my peers. This coupled with my particular interoceptive processing means I can put a lot of effort into getting things right, rather than considering my own feelings. I have autistic friends whose interoceptive processing works in a very intense way compared to my muted interoceptive processing. They feel sensations intensely and frequently whereas I feel fewer emotions or sensations. They too may have experienced issues with consent. Someone like me may not feel any attraction to another person but go out with them because it is the proper thing to do. My friend may feel attracted towards people instantly and passionately and pursue a relationship or sexual encounter without fully considering if it is what they want.
Our other senses play a significant role too in relationships and issues of consent. People experience touch differently. They may excessively seek physical contact or avoid it. Either of these responses can impact on the ability to consent. The person who needs lots and lots of physical contact in order to register the sensation, may invade other’s spaces or touch them more than is acceptable – there is a risk of them being accused of sexually inappropriate behaviour or being seen as initiating sex. The person who recoils from gentle touch because they need firmer touch may be drawn to sexual partners that are rougher. Other senses play a part too – sex is a multisensory experience. Autistic people often process sensory information in muted or intense ways. None of these sensory processing issues are insurmountable in an established relationship – mature sexual relationships are based on partners being responsive and considerate, the difficulties tend to be more problematic when building relationships or choosing potential partners.
Some people cope with sensory overload by shutting off or zoning out mentally. This may increase vulnerability because their capacity for making decisions about consent is reduced.
How do we help people make informed decisions about consent?
Consent is a difficult concept to capture in a universal definition. Capacity to consent fluctuates too, particularly for autistic people who often have atypical combinations of strengths and needs. Someone may have excellent verbal skills and be extremely articulate and able to problem solve a theoretical problem, but struggle to multitask the sensory, social, and interpersonal aspects of relationship building. On first impressions this person may appear completely able to consent but actually he or she is extremely vulnerable.
Explaining your potential difficulties, saying that you are disabled or autistic may be useful (or not!) for getting help when struggling at the supermarket, at college or in work. It could increase your vulnerability in a potential sexual encounter though. A decent person would understand, back off and take their time. Other people may take advantage of your vulnerability.
Denying Autistic people the opportunity to take risks and make mistakes won’t help them develop skills in learning about what they want from relationships. Open discussions using accurate, frank and honest language with our Autistic children, family and friends may help them explore issues and develop strategies that keep them safer and help them make informed choices. Giving Autistic people accurate and explicit information about sex, where they can ask honest questions without fear of ridicule or exploitation in a safe environment is essential. There are very few opportunities for this sadly.
Teaching people the reasoning behind rules may be more effective than teaching rules. We may hear that “Yes means yes and no means no”. It’s quite easy to opt for simple rules when you are a very rule driven Autistic person. This sounds ok on the surface but actually there are lots of times that yes means no. There are even times when no means yes. It is unlikely that you can learn every variable so asking yourself questions about whether this is something that is safe, is legal, is something you may regret afterwards, can be more effective than rules. And for me, the big question is “do I have a choice?” If the answer to that is no, then it is not consenting. Similarly, if my partner does not have a choice then that is not consensual either.
A difficulty with having a rules-based approach can be the inevitable exceptions to the rule. Think about this scenario… I tell my son that he must never show his private parts to an adult. OK – so what about a doctor? A doctor’s OK. But unless I specify that I only mean medical doctors; that you are visiting specifically about your private parts; in their surgery at an appointment and not anywhere else; etc etc. there will always be exceptions to the rule. Autistic people may struggle to place learning from one context into another context. We run the risk of the “Don’t talk to strangers” campaigns from my youth that failed to mention that most abuse is perpetrated by someone you know – and has nothing to do with puppies.
It is likely that people will end up in situations that they wish they hadn’t. Some people will have non-consensual sex. This non-consensual sex could be in the form of rape (as defined by the legal system), or it could be other forms of illegal or coercive sex. The person may have given permission but not technically consented. They may have felt OK at the time but regretted it later. Some people will encourage other people to engage in non-consensual sexual activity, this could be forceful or manipulative – they may or may not recognise the other person’s lack of capacity. The participants may or may not consider whether they were consensual experiences or not. Both partners may be non-consenting. People may consent at the beginning but change their minds. There are far more complex situations than there are simple “this was right and that was wrong” situations. In my professional capacity I have been involved in many, very complex safeguarding situations. Most aren’t black and white.
The complexity may mean it is difficult to apportion blame. Sometimes the fault is easy to identify. The law and public opinion is clear about particular acts. It may be more productive to move away from blame and fault when discussing consent in the less clear-cut issues and move towards the impact of the encounter. How has it affected the person? What can they learn from the encounter to help them be safer in the future? Feelings of guilt may or may not occur relating to any sexual activity.
It can be said that Autistic people struggle to understand the intentions of non-autistic people. To an extent, I would agree. I may experience this as some non-autistic people being liars, full of hidden meanings and insincere. Of course – this mass generalisation is grossly unfair, and as untrue as Autistic people being perceived as blunt, unemotional and rude. The ‘double empathy problem’ theory in autism explains this well. We can all have difficulties in understanding each other, regardless of our individual neurology, but when people of different neurotypes interact, there can be added dimensions to this.
Autistic people are frequently infantilised. Disabled people are often thought of as non-sexual beings. Social situations can be tricky to navigate because of all the sensory processing, unwritten rules and complex protocols that others seem to intuitively know but we don’t. This all adds up to put Autistic people at a disadvantage when making choices. We have the same rights to make mistakes as anyone else. But we need to be on an even playing field.
It may be helpful for Autistic people to learn assertiveness skills and about boundaries. This can help us advocate our needs and reduce the need for masking. Masking often leads to small issues building up into bigger and bigger ones because our needs aren’t shown, recognised or met. Learning to identify what we want and ask for it effectively can be powerful.
Learning about our bodies, emotions and senses is important too. Having a lifestyle where we regulate our senses and emotions as part of our daily life will help us be in a better place for making decisions and choices. For those of us that have sensory processing issues that impact on our ability to consent – we may need to find strategies that work as an alternative. For me, I don’t feel like or dislike or desire towards people instantly. My interoceptive sensory processing is slow and it can take time to know how I feel about someone. If I was single, I would make a strategy for myself that said “don’t have sex with that person straight away even if they say they really like you. Have a few dates first and find some things you have in common”. My Autistic friend who quickly develops intense feelings for other people may devise a similar strategy “don’t have sex with that person straight away even if you really fancy them. Have a few dates first etc”. It’s up to us as individuals to create the strategies that keep us safe and fit our individual lifestyles and beliefs.
Many of my blogs end with a paragraph about us all being human beings and how we should be kind to each other. This one is no different. It is likely that any of us, autistic or not, will find ourselves in situations relating to consent that don’t go to plan. Before we act, we could think about whether we are about to be kind to ourselves and kind to others. It’s a good starting point for deciding if we should consent or not.
I have had feedback about previous blogs where I explore issues like identity and body image. These topics may be painfully relatable for some people. I’d like to share the following:
No one is ever to blame for sexual activity they did not consent to.
No one is ever to blame for consenting and then later regretting it.
No one is to blame for making mistakes or acting in the best way they could at a time when they only had some of the information they have learned since.
There are many reasons for why we do what we do. If you need help or if reading this blog feels distressing then please reach out to someone.
When I searched the internet for a quote that would capture how autistic people experience emotion, I found plenty of search suggestions along the lines of, “Do autistic people have emotions?”. I wanted to get away from the popular type of search results that frequently reinforce stereotypes of unemotional autistic people so went for something a bit more academic and science-y.
There was plenty of research on autistic deficits and research questions were posed about whether empathy can be taught to autistic people. I also found other research into why autistic people don’t experience emotions.
I cannot honestly say that I felt ‘uncomfortable’ – my emotions don’t work like that. But my very logical mind began matching all these search results I was turning up, against the reality of my own lived experience of autism, and the realities of my peers, family, and clients. It just did not fit!
I “know” that autistic people experience emotions and in diverse ways just like everyone else.
So, I decided to see what the NAS had to say (The National Autistic Society – a well-known UK based organisation). They made a few mentions of autism and emotions in various sections of their website, typically in relation to challenging behaviour or emotional difficulties.
Overall, the perception online seems to be that autistic people may not experience emotions, or they may experience them in out of control ways.
Initially I disagreed with this.
However, after reflecting on this all day, I realise that “yes, we can look like that to people who aren’t able to empathise with us”. I personally believe that non-autistic people struggle with empathising with autistic people just as much as autistic people struggle with empathising with them.
This blog is my contribution to the discussion. It describes how this topic works for me. It may not be relevant to everyone else, or even anyone else, but if it creates an interest in what autistic people may be feeling under the surface and a willingness to explore this with them on their terms then great!
I went off on a wonderful tangent looking for a clear definition of what an emotion is. I discovered articles about the philosophy of emotions and the history of emotion too. I found there were evolutional and theological theories of emotions, and all manner of schools of psychology, neurobiology and sociology that added to the discussion. There is no simple definition – the subject is complex and broad and there seems to be no scientific consensus on a definition.
Most simply put, emotions are states associated with the nervous system brought on by all manner of different things, including our thoughts and behaviour.
Currently there are eight senses associated with humans. The five we probably learned at school: sight, smell, taste, touch, and hearing. The two associated with knowing where our bodies are – proprioception; and the effect of gravity on our bodies – vestibular. The eight sense is interoception – the sense of knowing how we feel. This includes feeling emotions and feeling bodily sensations like needing the toilet or hunger.
For me to describe how my emotions work, we need to consider my overall sensory processing.
My sense organs work fairly typically. My eyes are very short-sighted, but my vision is corrected with glasses. If an audiologist examined me, they would probably say that I have no issues with my hearing. My sense organs take in information in a fairly typical way. However, once that information reaches my brain, it is processed very differently to that of my typically developing peers.
Sometimes I need more information than most people need, in order to register a sensation – I like a full-strength hug not a gentle one for instance, or I can spin on a roundabout without feeling queasy.
Sometimes I need extraordinarily little sensory information to register the sensation – I can hear conversations in a room down the hall, and a door slam sounds as loud to me as a firework does to my neurotypical friend.
And this is where I would like to introduce you to the eight sense: interoception. It works just like all the other senses. It is not responsible for making emotions or affecting them in any way – just like the ears are not responsible for the noise they hear. Our interoceptive sense enables us to notice or recognise or be aware of how we feel.
If the way our brain processes sensory information is muted in so far as interoception is concerned, then we may not feel emotions, or the need to go to the toilet, or that we are hungry or in pain. If the brain processes the sensory information too intensely, then we may notice every sensation within our bodies, or feel emotions more strongly than other people do.
And just like all our other senses, our interoceptive sensory processing can work differently in different circumstances, or on different days.
Here are some ways that a person who experiences atypical interoceptive sensory processing may appear to an outsider, with my thoughts on what may be happening on the inside:
Doesn’t show emotions (maybe they are having emotions but not noticing them?)
Over-emotional (maybe that emotion genuinely does feel that strong to them?)
Loses their temper for no reason (perhaps they didn’t notice the sensation of becoming angry until it was too late to manage it?)
Moans about every tiny ache and pain (maybe their ‘tiny’ ache feels as painful as someone else’s broken leg?)
Doesn’t notice they have a severe tooth infection (perhaps the pain hasn’t registered with them?)
Won’t learn toilet training even though a reward system is used, and they fully understand what a toilet is for (maybe they can’t feel the sensation in their body that tells them they need to go?)
Has no empathy and doesn’t care about anyone else (maybe they don’t know how they feel themselves, so can’t imagine how others may feel?)
Blunt and insensitive – poor social skills (perhaps they have no personal concept of how unpleasant it feels to be spoken to abruptly?)
Easily led, vulnerable, promiscuous– forms relationships with anyone who asks (maybe if they don’t know if they ‘like’ people, they will politely become anyone’s friend?)
Perhaps autistic people ARE having emotions but just aren’t feeling them? No one would say that because I don’t feel hunger I shouldn’t eat. My care givers would be seen as neglectful if they didn’t feed me just because I never noticed I was hungry – food is a basic human need – everyone must have it.
So how about we look at emotions in that way too? Just because I don’t feel sad or show that I am sad, doesn’t mean I can be ignored when something sad happens. To deny me the compassion shown to my more typical peers following a tragedy, is as neglectful as denying me food just because I’m not hungry.
My personal interoceptive experiences tend towards the ‘needs a lot of input to register’ aspect of sensory processing. Growing up, this gave me the appearance of being aloof, disinterested in people, unemotional and cold. On a good day, I could appear strong, brave, and steadfast.
As an adult, I can still be interpreted in this way but I’ve learned to play to my strengths and there are times when the ability to remain calm in a crisis, keep a level head, and make objective decisions under pressure pose an advantage over my more typical peers.
When I was a girl, I knew I was different. I thought I must be a terrible person for being how I was. I remember despairing over my lack of ‘normal’ emotional responses and wondering what was so very wrong with me. Deep down inside I knew I did care and that I was kind and thoughtful (and my goodness, am I thoughtful – I cannot do anything without thinking it through in full first!) but somehow my experiences, my thoughts and my emotions seemed out of synch with each other.
I can remember experiencing traumatic events that would have made any normal person cry or feel distressed and I felt nothing. And not just because I shut off to those experiences. To my young self I wondered whether perhaps I was somehow to blame for these things? Surely I must want them to happen if I’m not even upset by them?
And like every other human, I am more than a product of my genes and neurology. My experiences naturally shaped me and added to the way I experience emotions. A complex cycle was created: My autism affected the way I behaved in response to sensory information; and thus influenced how others treated me; which then influenced my further responses; and so on…
My interpersonal relationships were different to the relationships between my more typical peers. I struggled to develop the skills that would enable me to relate to others with ease. I didn’t feel things like other girls did and I didn’t act like other girls did. I tried my best to copy and pretend sometimes, but on the whole, I was content being self-contained and kept myself to myself, lost in my own world of music, books, and nature.
I was labelled as unemotional and eventually believed that meant I must be uncaring too. Perhaps I was kidding myself that I was alright really? Perhaps my knowledge that I was fundamentally ok – just different; was wrong?
I feel it is important to recall at this point in the blog, that other autistic people may have the ‘doesn’t need much sensory input to register’ type of interoceptive sensory processing. They may empathise with others so intensely it hurts them. You will see how different we all are, but by viewing our emotional responses as a result of our sensory processing it may make more sense of why that is.
At this point, my blog heads off into a little discussed phenomenon. It helps me explain my emotional responses but is my opinion and nothing more. As I learn more about myself, autism, and the complex science of emotions, my opinion will likely change. This is how it makes sense to me at the moment, based on the knowledge and experience accessible to me at this current time.
Synaesthesia is a perceptual phenomenon in which stimulation of one sense leads to an involuntary experience in a second sense. It is widely documented throughout history.
For me, the acidic green of newly opened beech leaves is the colour of the musical chord A minor. C major is sunshine yellow, G minor is matt aubergine. I only see chords in colours not individual musical notes.
My ability at mental arithmetic comes from my experience of single digit numbers as coloured shapes – I can visually click them together to do sums very quickly.
Synaesthesia explains how some of my other senses experience information that was not intended for them. Hearing in colour is a common example. It comes close to explaining my emotional responses.
I’ve described how I believe I actually do experience emotions, but I don’t always feel them or show them. Just like I may not feel hungry, but my body still needs food. As I’ve developed a greater understanding of myself, I recognise that in fact I have more awareness of my emotions than I realised.
As my self-awareness has developed, I have noticed what happens in my body in response to different stimuli. When I have tried to explain this to some clinicians, their response has not always been accepting, or even inquisitive. Very often my descriptions were interpreted as a symptom of mental illness – delusional in fact. I would prefer to see my emotional responses as a form of synaesthesia rather than my “brain not working properly”. Here are a few of the many examples of emotional synaesthesia that I have experienced across my lifetime. Remember – the emotion is there just like it is for every human, but my brain processes it differently due to my muted interoception – which means I may not feel the emotion in a typical way. This processing sometimes appears as synaesthesia. My sensory processing is frequently muted or over-responsive anyway, but these examples are outside of my ‘normal’.
Sadness – my vestibular processing is affected, and I can feel extremes of seasickness when changing direction or speed on a walk; or fail to become dizzy when spinning at high speed.
Shock – vision becomes pixelated.
Happiness – colours get brighter – especially green, that’s why I love nature.
Stress – vision becomes distorted and objects lose their definition.
Tiredness – hearing becomes painfully acute.
Very sad – food tastes gone off.
I have started viewing these signs of how my brain is processing sensory information as “my” emotions. They are consistent enough that if someone were to ask me how I felt, I could confidently give them the name of an emotion that would match their neurotypical expectation of my experience. This helps them understand and helps me get compassionate responses from people. But it bugs me, because it’s a lie! I don’t feel sad, or happy, or stressed, necessarily at that time.
As practitioners we often support people to identify and name their emotions in order to help them get their needs met more effectively – my account is worth considering whenever we do this. Wouldn’t it be lovely if when someone asked how I felt, I could honestly say ‘seasick’. And they would know me well enough to appreciate that my seasick was the same as their sad. That would really help meet my needs.
I mentioned a key phrase back then; “I don’t feel sad, or happy, or stressed, necessarily at that time.”
I have always been aware of this out of synch relationship between my emotions and thoughts. If I need to process what other people would define as an intensely emotional experience, I can analyse it to the point of understanding it at an almost atomic level, but it will still rotate around my brain for years and not lay down to rest. The emotions can’t be forced. I am no more able to tap into emotions now than I was as a young girl.
I don’t see this as a problem anymore. This is how I roll! I am better able to process experiences now that I accept my atypical way of feeling those emotions. When I experience an emotional event now that I understand and accept the way my emotional responses work, I can still analyse the event to gain clarity and process it cognitively. I can also acknowledge that my sensory responses are ‘normal for me’ and nothing to be scared of or view as a mental health relapse indicator. I don’t give myself a hard time because I’m not feeling what I should be feeling. Sometimes I get the feeling much later anyway.
A recent example is of a bereavement that I experienced in November 2019. My initial responses were logical, practical and helpful. My sensory responses were visual disturbance, taste disturbance and hypersensitive hearing. My initial feelings were frequently related to the frustration of my ordered world becoming disordered through the loss of a key figure in it. I may have appeared unemotional, brave, strong, distant, or inappropriate. In June 2020 I felt sad and I cried for the loss. It properly hit me what the loss meant.
The worse thing about feeling emotions in this way but in a delayed manner is other people’s responses. I can look like I am not coping, or attention seeking, or struggling. Everyone else has moved on from these emotions, just as I am arriving. What I would have loved last month more than anything, is to have had the warmth, compassion, love and sympathy shown to me that was shown towards the people who were grieving like that in November. I appreciate that’s not how these things work, but this was a delayed response not a maladaptive one. Frequently I have not received the support I need from others because my timing is wrong or I have hidden my needs because of how it will look if I bring things up all this time later. Can we be kinder human beings I wonder, by giving people what they need, when they need it – even when it doesn’t fit in with our expectations of timing?
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?
Riding back over the mountain earlier, a pair of Red Kites swooped down low in tandem in front of me and majestically soared back up high into the bright blue sky. I was close enough to see their individual talons and notice whether either had a tag on its wings. There is something about the solitude of motorcycling and being in the scene rather than observing it from behind a windscreen that makes my heart soar, like those Kites, every time I ride.
My love of biking was sparked as a child. I spent those long school summer holidays wandering around on my own, down on the beach or in the park; or maybe I’d cycle the 15 mile round trip on my pushbike, to Brean Down, a local beauty spot sticking out into the Bristol Channel. I’d climb along to the old fort where I could hide and watch the rabbits and avoid the wild goats! (wild? – these were genuinely absolutely livid, and I felt like I took my life in my hands every time I ran the gauntlet through these hairy, horned, feral beasts). I’d make sure I was home in time for ‘Junior Kickstart’ though. This was a 1980’s British TV show and an offshoot of Kick Start – a televised trials bike competition where competitors would skilfully make their way around and over various obstacles as quickly as possible without touching them, knocking them over or putting their feet down. I can still sing the theme tune 30+ years later – along with the revving engine noise at the end!
I had to make do with bicycling when I was young. We lived in a semi-detached house in a town and there was nowhere to ride an off-road bike. And furthermore, it would not have happened because I was a girl. I wasn’t a typical girl mind. I asked my mum what I was like because I know I never played with dolls or wanted other popular 1980’s girls toys, like a ‘Girls’ World’ – in fact I found the idea of having a severed head (albeit a plastic one) in my bedroom that I could apply make up to and do its hair, quite repulsive. I did have a Cindy doll – I cut its hair off and knitted it some survival clothes for having outdoor adventures in, like being lost in a jungle or stranded on a desert island. My favourite things, according to my mum, and she was absolutely spot on; were reading and cycling. I would get on my bicycle and disappear off for as long as possible, not considering the fear I instilled in her by cheerily recounting how I’d cycled to the next town along the main road and then climbed a hill or gone looking for creatures in the sand dunes. I was an extremely accident-prone child and had a tendency to go off in pursuit of whatever it was that took my fancy that day, with no consideration for safety or telling someone. There was no way I was having a motorbike.
I had my first ride as a pillion passenger on a family friend’s motorbike. I remember how it felt sitting on the back and the pull of the various forces working on my body as we accelerated. I knew at that moment; I would have to have my own motorbike someday. It was all the fun of bicycling but with this added ‘something’.
When I was 18, I bought a moped. An orange Suzuki FZ50. I lived in a town near the Quantock hills and I’d ride up there and wander around, enjoying the solitude away from the busy streets and the flats where I lived. I loaned that bike to a ‘friend’ – well it was someone who lived in the flats who I hung out with. They disappeared off on my bike and I eventually found it dumped and broken. I saved up and bought a Honda step-through – one of the most popular motorcycles in the world ever. The classic C90 in red, with fairing, top box, leg shields – the full works. This bike wasn’t a ‘twist and go’ like the moped, but had 3 semi-automatic gears where you pushed the gear pedal to engage in a gear but without the need to hand operate a clutch lever. I used this bike for my daily commute to college and it ate up the 13 mile journey easily. However, I had decided that travelling to Taunton every day was tiresome and I was offered a room in a shared house belonging to someone on my course and I moved in. I was riding back to my new pad one evening and a young man shot through a red light and I hit the side of his car at 30mph and tumbled over his bonnet onto the road. We agreed to settle this privately and he gave me enough cash to buy my first proper motorbike; with manual gears, a kick start, and trail bike styling – I was about to realise my ‘Junior Kick Start’ dream with Honda’s XL100.
Up until this point, I had motorcycled alone, much like I did most things in life. One night in January 1994, with my arm in a sling from the aforementioned accident, I turned up at a friends’ house. John, Chris and Matt were guys I knew from my old town and had also moved to Taunton and were at the college, and they had planned a night out. Did I want to come along? I decided to give it a try and when I arrived I found that everyone had brought something to drink before heading for town. I’ve never been good at ‘getting’ this type of social etiquette and I looked around the room and asked whether anyone wanted to go halves with me on a bottle of red wine from the off-licence. This one guy said he did and we went off in search of alcohol. He asked me about my injury and we got talking about motorbikes and never really stopped talking about them for the following 27 years we spent together.
I hadn’t taken my bike test at this point because I had a full car licence and you could ride on L-plates with that. I decided to take my CBT and test, and passed first time that April. My first ‘big’ bike was the little Kawasaki Z200, that I sprayed matt black. It was a lovely bike and took me on all sorts of camping trips and to rallies and eventually when I moved to Bristol for University, it lived in my front garden and was used for getting around the city. I used to ride to West Wales where my partner had gone to pursue his studies in Lampeter. I discovered the joy of having long rides – and my goodness, everything feels like a long ride on a Z200! I had read Robert M. Pirsig’s Zen and the Art of Motorcycle Maintenance and my head was filled with tales of the open road and philosophy. I still have a copy of this book on my bedside table and I’ve re-read it at various points on my life and I always find something new that resonates with me. Pirsig was an extremely intelligent, articulate man who experienced treatment with electroconvulsive therapy back in the 1960’s when he was diagnosed with schizophrenia. Every time I read his books (Lila: An Inquiry into Morals further explores the concept of quality started in Zen and the Art of Motorcycle Maintenance) I reflect on how similarly we see the world even though we are world’s apart. I would have loved to have a conversation with him about so many things – I’d love to know his thoughts on autism.
Although I enjoyed riding as a pillion passenger or having a try of friend’s bikes and riding along with them, I never fancied joining a club or gang. It wasn’t just my gender – although I must say, most images of biker girls do not show appropriate safety gear in my opinion! I have just never been part of any ‘scene’. When I moved to West Wales there was quite a few bikers. Lots of students, a local MAG (motorcycle action group), a back-patch club on the coast and a NCC (National Chopper Club). There was a MCC around Lampeter at that time but I’ve always been put off joining any clubs. The back-patch MC clubs are generally male only (there are a couple of female MC’s) and the MCC’s have never appealed either. I rode around and lived a simple life and I hung out with other people occasionally and life was good. I had spent a good few years by this time with only two-wheeled transport. I had a full car licence but no car and I rode my motorbike day in, day out. Whatever the weather and wherever I needed to. I rented a converted barn in the middle of nowhere and had no electricity and only spring water. There was no road and the track was just about passable, and allowed me another taste of my ‘Junior Kickstart’ trials riding experiences. My favourite ride was over the hills to Lampeter and on a fine day I’d take off my helmet and ride along the ancient roadway, wind in my hair and a song in my heart.
I’ve never been one for fashion or dressing up, and motorcycling suited me for that reason too. I wore my bike gear all the time. No tough decisions on what to wear each day, no not knowing whether I felt comfy or not – I was always comfortable, my bike gear moulded to fit me and didn’t have to be washed so never smelt ‘wrong’ or felt itchy. It also suited living in a barn with no electricity where we relied on a rayburn and gas lights and candles. I’d ride to town and carry home a week’s worth of shopping in my panniers and rucksack, and strap a sack of coal across the saddle.
I opened by describing how being ‘in the scene’ rather than observing, was so important to me. Thank Robert M. Pirsig for that one. Riding a motorcycle is an incredibly ‘in the moment’ type activity. I have practiced mindfulness for a long time, and had an interest in meditation, and philosophy, and science for even longer. When I ride, I can only think about the present: I can wonder, and explore ideas, and contemplate and muse; but I rarely reminisce, or worry, or replay past events or plan for the future. You have to be present because you are on two wheels and travelling at speeds of up to 70 mph (or whatever the legal limit is). If you are not totally and utterly focussed, it is likely you will have an accident. Plus, why would you want to miss a single minute of that wonderful feeling?
So what is it that is so fantastic about biking? For me it’s not the lifestyle, I’ve never been one for conforming to any type. Although, the camaraderie is like nothing else. This morning I know that every biker that raised their hand to acknowledge me, had that look in their eye, and probably a smile on their lips that said “This is fantastic isn’t it?!” I’ve always felt accepted by other bikers, my autism doesn’t even seem to register because it’s about what we have in common not what our differences are. I’ve met lots of different people who ride bikes and I’d say that many of them would be seen as eccentric or non-conformist. It’s fine to meet a biker you have never met before and launch into an enthusiastic tirade about your ride, or their bike, or ‘did you just see that idiot pull out in the Volvo?, or even the cake you just had with your cup of tea. Small talk doesn’t seem necessary and this aspect of biking has always appealed to me too.
The most significant part of biking now makes more sense to me. I’ve always recognised there was ‘something’ going on, on that very first ride as a pillion passenger. Motorcycling affects every one of my senses in a most intense way. It is the most holistically satisfying activity ever. It regulates my emotions and senses like nothing else. Harley Davidson and the UCL have recently conducted scientific research into the mental health impact of motorcycling and the findings showed that the benefits are more like those of exercise (reduction in stress hormones etc), rather than being similar to having a drive in a car. Any biker could have told you this! I’ll describe how motorbiking effects my senses:
Vision: There are so many styles of motorcycle to choose from. I’ve owned and ridden all sorts, the machines I’ve described in this blog and many more besides. I do like a trail type bike personally. I like to sit upright and be high up and get a good view over the hedges. My latest bike is an Aprilia Pegaso Strada – a kind of adventure bike machine. Bikes are beautiful to look at and Mal and I sat just staring at his Enfield bullet and it’s wonderful mechanical simplicity and style.
Smell: Who doesn’t love that smell of hot engine, petrol and oil? It is the most satisfying smell to open your garage door to.
Auditory: I love a big single cylinder engine. I had an XBR500 café racer style Honda before the Aprilia and that too had a wonderful slow, deep, thump of a big single cylinder motor.
Touch: The feel of wearing clothing that is solid, fits well and has no fancy bits to irritate me is great. I love the sensation of sitting on the bike and being able to feel things with the extremities of my body. The clunk of the gear pedal, the twist of the throttle and the wind in my face.
Taste: It isn’t a proper ride out if you don’t have chips or a cup of tea and cake! I could write a book called ‘Around Britain by cake’. Whenever I recount a past ride-out I’ll always remember where we stopped and what we had to eat there. Food just tastes so much better when your senses are switched on by the joy of riding.
The next 3 senses are the ones less discussed outside of autism circles. These are the important ones for me though when it comes to motorcycling:
Vestibular: This is the sense of where your body is in relation to gravity. This is the sense that biking really excites in me. I like speed but I prefer acceleration. That pull and push of speeding away from a standing start just gets me going every time. When I am moving, my clumsiness disappears, and I can judge speed and distance in a way I just can’t when not on the bike. The forces working on my body as I travel switch something on in me that lasts much longer than the ride itself.
Proprioception: I mentioned my clumsiness and if you saw me off the bike you’d probably advise me that motorcycling is not for me! The clothing helps give me a sense of where my body is in relation to itself. I feel sensations in parts of me that I didn’t know existed otherwise. Having recently taken up riding again after a break, I realised that the vibration of riding and the repetitive movement of using my hands on the clutch and brake levers give me a sense of where my forearms are. I’d forgotten I had forearms to be honest and I frequently have bruises around my wrists where I knock things because I don’t notice in time. I need to put a lot of movement into my arms to notice them – I wonder whether that is why certain repetitive movements involving shaking or flapping your arms are so common in autistic people? The vibration (that favourite big single-cylinder engine again) gives me a sensation throughout my body. It’s neither pleasurable nor uncomfortable, it just seems to vibrate everything awake and I know where my body is for ages after a ride. I have certainly been less clumsy during those periods in my life where I rode daily.
Interoception: This is the sense of knowing what you feel – whether that is bodily functions like being hungry or your emotions. I have weak interoception and motorbiking awakens a pleasant feeling in me. It’s not a strong emotion, it’s more an inner peace where I know I’m ok, I know I’m contented and I know that I am part of the world.
Have a read of Zen and the Art of Motorcycle Maintenence
“Yes” he replied, “you’re always kind and don’t give punishments for no reason”
I’ve been a mum for quite a while now and I’m wondering when my natural maternal instinct will kick in! Actually, I don’t expect it to. Now that I understand my autism diagnosis more clearly and recognise how my sensory processing works and in particular my interoception – or sense of knowing how I feel; I am as likely to feel a natural mother as I am a natural teapot, or natural anything else.
If I don’t feel like a good mum then does that mean I’m not one? Of course not. I often don’t feel like I need the toilet – but I still have to go regularly! I did not feel that I dislocated my knee when it was twisted out of shape. And I may not experience feelings of intense love or anger or regret, but I know what these emotions are and although the feelings may not be there for any of these examples, they are still valid and very real experiences, albeit “felt” in a different way.
I “know” that I need to use the toilet regularly, I need to eat regularly, I need to be aware of my body and potential injuries. I “know” that when something upsetting happens I may not feel a strong emotion in my body but my sensory processing may become hypersensitive sometime later that week. I know that eventually, after a lot of intense cognitive processing, I may have a sense of an emotion – often long after the event. Or I may not. This is just how I am. I also know with every ounce of my being, that I love my family.
I was delighted and surprised when I discovered I was pregnant. It was unexpected and we had experienced previous losses. I enjoyed the experience of being pregnant and was super-fit and swam every day in the local pool – only just able to bend down and put my shoes on afterwards by the time I was in the last weeks of my pregnancy. I also walked with the dogs several times a day and was even riding my motorbike until the throttle cable snapped and I pushed it back into the garage where it sat for many, many years unridden.
My experience of birth was traumatic and lengthy. Eventually our son was delivered by emergency caesarean section. He was 11 lbs (5kg) and was certainly not going to come out via the traditional route. I remember desperately needing a can of fizzy orangeade and a ‘double decker’ chocolate bar straight after he was born and I begged my husband to get me them. I have never craved anything so fizzy and so orangey, so much in my life! My husband had to make a visit to the shops the next morning to exchange the new-born sized baby clothes for something that would fit this strapping lad.
We settled in to family life and I was very unwell for a long time and will forever be thankful for the continuous support my husband gave me to help look after both myself and our son. I have very few memories of family life, unfortunately, but I have lots to share about how we live; how we cope; and what we think about life, the universe and everything. Our family’s story is not solely mine to share and it is up to our son if later on he decides to describe incidents and events from his life or not. My own autism, and my own upbringing has influenced how we get along together. And this is what I will share in this series of blogs:
Food, eating and drinking.
Food is a huge topic to cover. We often take for granted that we eat our meals and snacks and hardly give a second thought to it. But there are multiple things going on with regards to mealtimes:
The environment – a familiar family meal at home, or a busy café, or eating whilst in the car, or on a picnic. The list could go on. These places vary in terms of social etiquette and sensory input. Anxiety levels can increase very quickly in certain environments because of the sensory processing demands (think scraping chairs on café floors, laughing customers and smelly food)
The ‘rules’ – when I was growing up, my family were very keen on table manners. I took to that quite well – I enjoy a rule and knowing how I ‘should’ behave. It can get complex though because rules can feel very contradictory to an autistic mind. “Eating outdoors walking down the street or sat on a bench in town is unacceptable and bad manners” but “Eating outdoors sat down on a blanket in a field is a picnic and a treat”. “You must use a knife and fork properly” but not for pizza, or for a buffet, or for the chip shop. But chips at home must be eaten with cutlery.
Interoception – knowing you are hungry, knowing you are full, knowing what you fancy to eat, knowing if you like something or not. Personally, I always opt for exactly the same thing when I eat out or I choose it before I get there. I know what I’m getting and I don’t have to make a complex decision based on what I feel like whilst in an overwhelming environment that is going to suppress any sense of what I feel anyway.
Choice – regardless of whether your interoception works in a way that indicates to you what you’d like to eat, choosing from potentially infinite potential meals is almost impossible. “What do you fancy for dinner?” is usually followed by my brain rapidly firing through the following thought processes:
What have we got? – I don’t know.
What should I be asking for? – Is there a correct answer I’m meant to know?
I know, what did I have yesterday? – I’ll ask for that.
And that is why I often eat the same things every day. I also tend to opt for carbohydrate rich, yellow, beige and white foods, and cheese. You know where you are with a white food. No one can hide something inside white food that you will come across unexpectedly. These foods are pretty safe. You know what you’re getting! It’s also easier to imagine what you want from a list of choices if that choice is limited to one colour. Less thinking!
Proprioception – coordinating cutlery whilst sitting up straight in a chair with the sudden smell of hot food wafting up your nostrils takes a lot of concentration! I do nothing intuitively or naturally and I need to constantly check where my body is . This is hard work.
Consciously coordinating chewing, swallowing, breathing and talking requires a great deal of focusing. It is easy to lose track and cough and splutter.
Taste – like many people, my sensory processing works in such a way that I can experience strong aversions to certain tastes whilst not noticing other tastes that some people find repulsive. I enjoyed licking door keys as a child and although I haven’t licked a key in many a year, I am tempted to do so just to get that hit of sour, acidic, metally tang that is both unpleasant and strangely alluring at the same time! My brain tells my body that certain tastes are not just unpleasant – they are dangerous, repulsive and should not be eaten. Fortunately, there aren’t that many tastes like that for me and I tend to prefer bland foods but I’ll enjoy a mild curry or chilli, but I will not go near tastes that ‘shouldn’t’ go together like sweet and sour food. What is more significant to me is…
Texture – the sensation of certain foods in my mouth is so extremely repulsive, I am struggling to write about it candidly whilst thinking of examples! Throw away your logic and consider mine instead for a moment… I like a jacket potato, I like chips, boiled spuds are fine too. Mash is not. They are all potatoes and I’ve had endless “but you like potatoes” type discussions in my life, but no one is going to convince me otherwise that mash is just potato and fine to eat. I will eat occasional mash – for instance on top of a cottage pie that my husband has made. That is because I know exactly what that mash will feel like in my mouth. There will be no surprises. “Just try a little bit” does not help me. Food is not consistent. Different brands of baked beans taste very different to each other, and with my poor interoception and ability to know whether I like something or not, how am I meant to know if someone has poisoned my beans, or if they have gone off, or just swapped them for a different brand? I know they are still beans and I like beans, but they don’t taste the same and that means something is WRONG!
Temperature – I need the temperature to be just right. I’m blonde – maybe its a ‘Goldilocks and the three bears’ thing?! If it is not just right, I won’t eat it.
The key thing to remember is that none of these variables are working in isolation. And that is why I can appear so picky about food. If a café has lots of music playing, and bright lights and smells of meat (which I don’t like) then it is likely that my central nervous system will be really fired up and working out whether I want to run away; freeze; or fight. I may become hyperalert and over-responsive to sensory information and find I can’t tolerate something I usually eat because it tastes different. Or I may shut down inside and be under-responsive and crave something strongly flavoured that registers on my taste buds. If I am stressed about something going on in my life, or it is a big day because of an interview or event, my sensory processing works differently too. This is not a conscious choice on my part but an automatic reaction driven by my atypical neurology.
I think the generation I grew up in was more strict about table manners and finishing what is on your plate and eating what you are given, without question. That helped me in some ways because the very strict rules meant I at least had some structure and predictability around mealtimes. However, the predictability was I’d end up being told off! Every single time. And that has added an additional component to my relationship with food. In the 1970s and 80s, sensory processing wasn’t understood like it is today, and I was viewed as fussy or a picky eater. We understand more about it now and I’ve been able to use both my own upbringing, that recognises the importance of structured mealtimes – and my personal insight, that recognises the challenges and distress of autism to inform how we have brought our son up.
In our house, we don’t make a big deal about food. It is a big enough deal already! We totally appreciate how our son may like something one day but not another day and how his logic for not eating something may not work along the same lines as our logical reason for why he should eat it. A balanced diet is important and we have had weeks and months where we metaphorically pulled our hair out thinking “he cannot just live on that for the rest of his life”! But he hasn’t. Eventually, whatever it was that drove him to need to eat a particular food or avoid a particular food has changed and he has tried something else. Here are some tips that we’ve used over the years:
Regulate your own emotions and senses before you begin. Then help your family regulate themselves.
Don’t panic (or at least don’t look like you’re panicking!). If your panic is sensed then stress levels will rise. If stress levels rise, whatever the sensitivity is may increase.
Choose your battles.
Keep mealtimes calm and never make any of it a big deal. Most children will not starve themselves to death. Talk to your health visitor or GP when you need to.
I imagine it is normal to feel powerless or like a failure or neglectful. Don’t compare yourself to other parents who talk about their ‘perfect’ sounding families and child-rearing skills.
If it works for your family and you are fulfilled and living life how you choose then consider carefully why you would do things differently just to appear ‘normal’.
Teach rules that are 100% honest and consistent and teach different rules for different scenarios e.g. eating with your fingers is fine at home but not at Nanny’s house because Nanny is old-fashioned and will view it as bad manners.
Make learning about food a family hobby or interest. Grow some food to eat. Cook together and don’t worry about experimenting as you don’t have to eat it! Bake a cake and mix the ingredients by hand and not a spoon – if you like the sensation. Learn about food groups and a balanced diet.
If a particular colour of food is preferred then find a balanced diet from that colour.
Never use food as a reward or a punishment. Ever.
If certain textures are preferred then find a balanced diet using that texture.
If cutlery is tricky to use then order food when you are out that doesn’t require cutlery e.g. pizza.
Choose your battles. It’s worth repeating!
Choice can be overwhelming and whilst we may think that giving a choice may make it more likely they’ll eat it, it may not. You could be just adding to the overload. We have a weekly menu up on the fridge. This means that meals are predictable with no nasty surprises and there is enough time to process what the meal will be and decide if that’s ok or if we want something else.
It is perfectly logical to like something in a café but not at home or vice versa. If you are a person who has to analyse and categorise everything to understand it. And you only see the bigger picture by first studying the smaller pictures in intricate detail, then you will notice when things are different or don’t go together.
Choose your battles.
Social eating is different to eating on your own or with your family – it can be very overwhelming and you may need to take time before and after to regulate your senses and emotions and those of your family.
Make your own rules. Who says you have to eat at a table? Or with other people? It can be nice, and it is seen as an important social occasion, but if at first all you can do to ensure your child is fed is to give them what they like, when they like it, where they like it then do so.
If using cutlery is difficult, risk assess whether they can use alternative cutlery. Maybe this will be specially adapted handles for knives and forks or even extra sharp cutlery that makes cutting easier. (like in the photo).
Use plate dividers to stop certain foods touching each other or use separate plates.
Don’t tease or point out things you find odd. Accept people’s preferences. (I need to have my burger arranged in a particular order, I only have a tiny bit of milk on my cereal, vinegar must never touch bread – yes, this is unusual but taking the mickey out of me for it just reminds me I’m different and makes me feel sad for being me)
Take it step by step. Why is your goal important? If it is about making sure your child is healthy then of course. If it is about conforming to what you think you should be doing as a parent then challenge yourself!
In our home, the aim is not to get our son to eat everything or eat certain things that we know are good for him. We offer simple choices between a couple of things that we know he likes. Whenever we introduce a new food we keep it laid back. Mealtimes may not be the best place to try a new food – keep mealtimes safe and predictable. Try new food as an activity on its own where it is fine to have an extreme reaction – positive or negative! It’s also fine to change your mind or try something at a later date. Our son knows that green leafy vegetables often taste bitter to children and that as he gets older the taste may change – he finds this interesting and is happy to consume spinach as part of a scientific experiment on taste and ageing.
Our family believe that food is an essential part of life. We need nutrition to live healthily. Apart from that we do our own thing!
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.
A few weeks ago I hadn’t heard of self-isolation but so far I am loving it! I have been enjoying contact with other people more than I have ever done.
That sounds contradictory and even a little facetious I suppose, and in no way do I wish to belittle other people’s experiences. It got me thinking though about how we all take things for granted and how some autistic people will have so much to offer the wider world at the moment. This is because some of the shared struggles in our society during the Covid-19 pandemic are very common daily challenges for autistic people, who have had to learn to cope with them well. I am delighted that so many people are working together and talking about a better world that we can create out of this dreadful and terrifying situation. This is a time for people to listen to each other and learn from each other and share with each other as equals. There may be some viewpoints that we don’t usually hear, or quite likely that we don’t usually listen to because of the biases that exist in society and in our own subjective views of the world.
Now is an ideal opportunity to come together and understand each other better, to learn from each other and have a go at seeing things from different viewpoints. We can all learn from this shared experience of the Covid-19 pandemic. In every other species in the natural world, diversity is a positive thing and an essential component for survival. Isn’t it about time humans caught up?
Before I go any further, we need to discuss empathy. Lots of people have written about autism and empathy – and far better than I can attempt to. You may have heard that autistic people don’t have empathy because they lack theory of mind and can’t imagine how another person thinks and feels; you may have heard that autistic people have too much empathy because they feel absolutely everything. There are different types of empathy anyway – emotional, cognitive and compassionate, for instance. There is no universal definition of how empathy works for autistic or non-autistic people.
This is my personal blog so I’ll describe how empathy works for me – but remember that we’re all different. Some friends of mine who are autistic feel other people’s emotions so strongly and intuitively they find it overwhelming :
My sensory processing is very different to a typical person’s. I hear, smell and see things intensely and notice the details that others miss – in fact I can’t filter any of this out which makes it tough to concentrate or relax; I flinch and jump at a light touch on the arm or an annoying label in my jumper but don’t notice I’ve left half my dinner on my face! I need to walk and do strong physical activities so that I know where my body is and what it is doing or I’ll bump into things and trip over endlessly. It is frightening and disorientating to feel so detached from my body at times.
And internally, my interoception is such that I have attempted to “walk off” a dislocated knee; I have managed several hours of contractions during labour by using breathing techniques and not a cry passed my lips; I may not notice I am coming down with the flu but I will feel unbelievably depressed instead for no reason. I can feel no emotion whatsoever when someone dies or there is a tragic accident – but then it hits me later and then I appear to be dwelling on it, not letting it go and attention seeking, and surely “I should be over it by now”. I don’t have a great sense of what I am feeling and what I do feel is not necessarily accurate so I do not trust my “gut feeling”, in fact, I may not even have one! So, if I have no idea what I am feeling then how on earth am I going to know how you are feeling?
What I understand is gained by observation and learning. I have read a great many books and I have a career in working with people, either in a supportive role, or as a manager. My colleagues include support workers who demonstrate daily how social interactions work; psychologists who tell me “why” people do what they do; psychiatric nurses and psychiatrists who explain “what went wrong” and a multitude of other professionals and families and individuals that I learn from every single day.
So I have developed a good knowledge bank about what people do, some of the potential reasons why, and what an appropriate response should be. And even better, in work this stuff is written down and as long as everyone is consistent and responsive to learning and adapting, then if you follow a person’s support plans or risk assessments you can interact in a meaningful way with people who are really distressed and struggling with communication. It makes me look rather good at all this people skills stuff!
With all this mass of sensory information bombarding me, and no filters; and all the mass of knowledge I need to take on board just to know what to do, things can become overwhelming. I need to compartmentalise things and create rules and systems to work within or else I can’t function. A bit like having some easy to identify folders and sub-folders on your laptop. I am very open-minded because I don’t have filters like “socially appropriate interests for a middle aged woman”, or “cake isn’t a suitable breakfast food”, I don’t get caught up in the excitement of talking about a television programme with colleagues – it creates no emotional response in me. I am not impressed by which car would make me appear most successful or cool – I look at the practicalities of it instead. I am not interested in the hierarchies many people value.
My belief system is one of my own. I have explored religions and share many principles and ways of living my life with a number of different faiths and beliefs but ultimately I don’t believe in any of them at all. I do believe in “doing the right thing”, in “being kind” and enabling people to be themselves so long as they are causing no harm. I am absolutely solid and unswaying in my beliefs. People call this integrity. This is what causes me to be the person speaking out against injustice even though it could be detrimental to my career. It means that I can regulate my own behaviour and act in a fair and consistent way towards other people because I have no ulterior motive and I’m not doing it just to conform or fit in or because I’m frightened of getting into trouble if I don’t.
I don’t “feel” empathy particularly and this can be very useful when supporting someone who is upset or when I managed a residential service for people who displayed challenging behaviour. My reactions don’t tend to trigger other people, there is nothing for their distress to feed off coming from me and I tend to create naturally calm environments around me where emotions don’t escalate because of my interactions or behaviour. I “know” that certain behaviours in another person mean certain things and I combine my knowledge of the individual or situation, and my personal beliefs to create my response to their situation. The down side is, if I have misunderstood or it is a new situation then I don’t know the “rules”. It is also relentlessly exhausting.
Recently I asked a colleague for tips on managing a new situation I had not come across before – the particular type of small talk being used in the Covid-19 pandemic between people who don’t know each other well and want to vent about it. (I am good with talking to friends or family or colleagues about the topic, it’s just this particular aspect I was struggling with). I don’t want to dismiss people, invalidate them or escalate their anxieties but I don’t want to hang around and catch or spread something either! Fortunately my colleague understands me and understands autism so captured it in a way that I understand and can use. She said that when someone random starts talking to me about coronavirus I can use this technique: “Acknowledge (e.g. yes, it is terrible), Divert (e.g. but the weather has been lovely, have you seen all the birds?), Walk away (e.g. I must get going now, bye)” This is a perfect way of managing the situation and explained to me in a way that I can learn off by heart and apply in a number of settings. It also saves me from looking rude, disinterested or going off on a tangent. I have added this to my encyclopaedic knowledge of how to get by in life. This is how I operate. It can feel a bit false and on a bad day I wonder whether I’m some kind of robot and not human, but this is how life has always been for me.
So this is how my empathy works: It is a practical application of doing what is right for the person I am empathising with. I used to think empathy was about finding something in common with the person that we can both relate to and talking about that because that’s how it looks like to me when I observe empathy in the general population. But that can feel very invalidating for the person and is as if I am hijacking their emotional situation, or attention seeking, or making it all about me. I try and avoid that, but it is a difficult balancing act that I frequently get wrong. For the people that know me, it doesn’t matter. They understand that my intentions are good and about being caring, but my actions may appear random, blunt or insensitive. It’s no big deal to them but it holds me back from interacting more with others because of my fear of getting it wrong and being misunderstood. Empathy is extremely complex and difficult to get correct.
There is a place for the “things we’ve got in common” aspect of empathy and this blog will invite the reader to look at autism from that perspective. I respectfully ask that if the reader is not autistic they don’t assume that because we have things in common we must all be “a little bit on the spectrum”. Try and appreciate the complexities and fundamental differences behind the diagnosis. My husband has backache at the moment and is feeling tired, he is not however pregnant. Or even a “bit” pregnant! The important message I would like to share is that fundamentally there is one thing we have in common regardless of our neurology – and that is our humanity.
I like things to be predictable. In fact my husband frequently tells me that I must stop trying to second guess everything all the time. Clearly he doesn’t appreciate the total carnage that would occur if I were to do that! I have to know what is going to happen so that I can plan. If I don’t then how can I ever know what it is I am meant to do? Anything could happen! In fact, my husband is fantastic and he knows that in my unfiltered world I need some predictability and routine to guide me. We have a calendar on the wall and a magnetic planner on the fridge. They have appointments and anniversaries recorded on them. There is additional information at the moment about our lunch and dinner menu. Outside of this self-isolation period, I would not need this level of detail about our meals. I know that my husband will have something prepared for us that we enjoy – and the fact that we always have breakfast, lunch and dinner is enough information for me. But at the moment, in these times of uncertainty, I need to know that lunch is a veggie sausage roll and salad and tonight we are having spaghetti bolognese, followed by strawberries and yoghurt. Breakfast doesn’t need to be written up. Breakfast is easy. It is always crunchy nut cornflakes for me, after all, how could I possibly know the day was underway unless I had my daily fix? I describe my anxiety around the panic buying in my earlier blog about anxiety and coronavirus, and elaborate on the value of routine in my other blogs too. Our son felt much better about life once he had replaced his old pre-coronavirus routine with a new one – this is shared in my blog about coping well and self-care.
My need for doing things a particular way that is planned and organised has been called many things:
• Control freak • Highly organised (when it makes sense to others) • Highly disorganised (when it only makes sense to me!) • Inflexible • Procedure led • Consistent • Rigid • Insensitive • Thorough • Diligent
As you can see, interpretation of why I do things the way I do is open to whichever agenda or opinion you wish to hold. I can appear to be all of these things. I can actually be all of these things – and none of them – and they vary as well. Even though I love a rule and would categorise and break everything down into its tiniest elements if I could, I have to accept that human beings do things for a number of different reasons and these reasons are not fixed across one person, let alone across the entire human race. Me included.
The more unpredictable a situation is then the more people will create a routine so that there is some predictability. I loved reading survival books when I was young. All about how to live off the land after a plane crash with only a small tin containing a magnetised needle, a coil of wire, a match (with the end dipped in wax to keep it dry) and some other handy items. I also know which bear to run away from and which to make yourself look big in front of! I know how to turn urine into fresh water and how to skin a rabbit that I have caught in a noose (using that handy bit of wire). All of this has been completely and utterly useless in my life – particularly as a vegetarian. I should have studied books on how not to get bullied, not be so gullible and how to make friends! However, I do know that in a survival situation it is important to structure your day. Shipwreck survivors are likely to have created themselves a routine and stuck to it rigidly, even through the days of dark depression and flagging motivation. The world feels very frightening to people at the moment and the language and media coverage used to share information about the coronavirus pandemic often conveys fear. Every day can feel like a survival mission for some people. When you consider the difficulties of sensory processing and add to that the particular way imagination works for a lot of autistic people then it begins to make sense why autistic people experience so much anxiety.
Another way that people create predictability is by their behaviour. Sometimes I will plan and structure my outside world to give me a sense of order and control and sometimes I will provide my own internal predictability. This is important to me because I don’t have a great sense of what is going on inside of my body due to poor interoception and I have terrible proprioception as well, which results in countless bruises that I don’t remember getting from where I have misjudged doorways or fallen over my own feet.
I took my son to a trampoline park last month. We both enjoy a good bounce and he challenged me to a jousting duel on the balance beam above a pit of foam. I was wearing black socks and I stepped confidently up onto the black beam and held my pugil stick ready in my best jousting pose. My son approached from his end of the beam and all of a sudden I realised I was absolutely frozen solid. I had taken my glasses off for safety reasons and I could no longer see my black socks on the black beam and although I knew my feet were down there somewhere, I could not make them move despite shouting at them silently inside my head to move forwards or back. There was nothing more I could do. I had to suffer the humiliation of asking a teenage lad to knock me off the beam where I was stuck and into the pit of foam so that I could crawl out!
This experience made me realise how easy it is to misinterpret the actions of autistic people and it reminded me of a training session I attended where my partner said I was refusing to take part in a particular activity. In fact I was unable to despite my best efforts. The task involved using a mirror to complete a simple drawing exercise and in the same way as I couldn’t move those feet of mine because I couldn’t see them and therefore had no sense of where they were, I couldn’t make my hand draw when I could only see it in the mirror. I find mirrors and videos of myself extremely distressing. I have absolutely no sense whatsoever that the person I am looking at is me. I have been looking at some old photos recently and trying to make myself connect in some way with that person in the picture. It is difficult. My inability to recognise myself and move my body or “comply” as so many professionals like to call it can look like I am being lots of other negative words like “uncooperative” or “refusing”. It makes it seem like a choice when it isn’t. It adds a label to a person that does them no favours and offers no help or understanding.
Now that you have a deeper understanding of what it is like living in my body, you may understand why it can feel so reassuring to create predictable and repetitive sensations. There are as many reasons for this as there are for my need for external routines, and they vary in a similar way too. People sometimes use the word “stimming”. It’s not a word I like because it makes something that is so central to who I am (yet keep more hidden than almost anything else I do) feel pathologised and a symptom of something that is wrong with me. I feel ashamed of myself both for doing this in the first place and feeling like this about it, but I have a deep respect for the people who are confident in their openness and ease at being themselves. I would like to live in a world where one day a person flapping their hands in excitement or to relax is seen as normal. Self-stimulatory behaviour as it is sometimes known can be many things including:
• Hand flapping • Jumping • Twirling things • Making favourite noises • Stroking fabrics or textures • Sniffing objects • Listening to a repeated noise
There are as many of these as there are people and the purpose of stimming can be to relax, to liven myself up, to feel good, to calm myself down, to help myself think, to give myself a sense of familiarity and control. It is a need that I have and not something I have a choice over. I don’t view it as a problem that I should give up. I don’t have any repetitive behaviours that are harmful to me (unless you count getting your head kicked in for looking weird!) and if I did or if our son did we would try and change them into something less harmful, but I would never try and stop something that is integral to being me or anyone else. Repetitive behaviours are likely to be increasing across society during this time of uncertainty. Maybe the reader has their own examples? Perhaps you are nervously tapping your leg up and down more at the moment? Or smoking more? Or biting your nails? Maybe that relaxing bath with the essential oils every evening is vital for your wellbeing? Perhaps you’ve taken up knitting again and find the repeated motion of the needles and the sound of them clicking together rhythmically is soothing? Don’t be surprised if your autistic friends, colleagues and family members feel the same and please don’t jump to the conclusion that an increase in repetitive behaviours always means that something is wrong with them. There is something wrong at the moment – the Covid-19 pandemic – and it feels perfectly rational to me to increase my coping strategies because of that. I have a huge selection of coping strategies at my disposal and I try and use the healthier ones.
I have a tendency to take things literally and for me, this is nothing to do with a lack of ability to understand information. I’ll share a piece I wrote recently that describes how this works for me and is pertinent to the current world situation.
So with all this fear, why am I enjoying the social isolation so much? I see inspirational quotes on social media about how we’ll all one day be able to hug in the streets, meet for coffee and engage in small talk yet again. This is not inspirational for me. In fact, if you asked me to describe what a really bad day was like, then those three things would be in there, and pretty near the top! But I am enjoying socialising online and I have been in contact with old friends that I’d lost touch with and I’ve even been on the phone. Yes really. Did you know that you can actually speak with people out loud down a phone and they will talk back? It’s not just for using as a diary and handy internet search tool. I am realising that I am far more sociable than I ever imagined. The threat of having to meet face to face has been completely removed and I am free to communicate from another room! Let me explain why this feels so great:
I like people. I find them interesting. However, (and please reflect on the earlier part of this blog and how my senses work and how I have no filters and a tendency towards a literal interpretation of events, before you take this personally and pass judgment) – people are overwhelming.
Imagine yourself in an empty room with nothing going on. Gradually, people enter the room. It may not bother you, but try and think about it through my senses.
People smell. Every single one of us has our own smell and many people top that off with fragrances too. Imagine all that mixing together and having to be processed. This processing alone will use up some of your capacity to function. Have you ever tried concentrating when there is an unpleasant smell in the room?
People are noisy. Laughter and shouting feel the same to some people – e.g. frightening. All the noises combine and it is difficult to know which you should be paying attention to. So on top of processing the smells, you now have to calm yourself from feeling scared because of the noise and work out what to tune in to.
People move about and are unpredictable. They touch you out of friendship and to build rapport but that hand reaching out may feel uncomfortably gentle and tickly but if you flinch you will look rude so you have to switch a bit of yourself off to cope with the potential touch. So you reduce your capacity for socialising even further by switching a bit of yourself off.
…Another bit of you is processing the smells. Another bit of your capacity is calming yourself down because of the noise. That bit is also saying to you that you must act “normal” and not do anything too autistic to cope with all this like flap your hands about. You are also trying to listen to the correct conversation.
Then the person makes eye contact with you. This feels physically painful and you feel nauseous and panicky. You know that eye contact is normal so you have to use a bit of your capacity to make sure you are doing enough eye contact, at the right intervals and for the right duration. It would be easier not to but that feels rude. Think for a minute about a scenario at a job interview, for instance. Imagine being asked a difficult question that requires thinking. Where do your eyes go? Most people’s eyes will move from eye contact and turn to look slightly upwards and away from the person (or downwards and away from the person if they are feeling intimidated or told off). It frees up some capacity to think.
I haven’t even covered all the senses yet but am conscious of being repetitive. Now add in some factors like taking things literally and struggling to know how you feel or how to show empathy appropriately.
I hope this has shared my experience and helped make a point without being too preachy. My avoidance of social situations is nothing to do with liking people or being aloof. My outward expression because of my poor interoception may make me appear to be disinterested or bored or unemotional but that is not the case. I avoid social contact because it is so bloody exhausting!
What I have found is that this reduction in social overwhelm has increased my usually overloaded capacity. I am able to relax and enjoy things and my focus has been intense and productive. I also know that I am good in a crisis. A line manager once said to me “I do believe you thrive in a crisis” and she was right. When others are reacting emotionally, I am calm and logical and continually seeking a practical solution. Sometimes this is annoying for people. Sometimes people don’t want me to solve their problems, what they want is a listening ear and a person to just sit near them that they can share it with and I am very good at getting this wrong and defaulting to being helpful and trying to fix things. At the moment though, my traits of being calm, following instructions and being able to hyper focus are useful and valuable. Some of my most commercially successful work has been done at times other people would have taken off for compassionate leave. Having a focus gives me a purpose and it regulates me because I know what it is I am meant to be doing. It channels my energy. I was told once that I should take it easy at times of high stress. This was said by a mental health professional that was viewing my undiagnosed autism as a psychiatric illness. This is good advice for some people but not for me. There is always a balance to be found though between focus, interest and obsession. I explored the benefits of seeking information in order to cope with situations in an earlier blog and noted that it is important not to become obsessed. Here are some tips:
Self-care and regulating myself is part of my daily routine. It consists of activities likes walks and exercise and meditation sessions but mostly from integrating self-care as a way of doing things rather than a special activity I have to plan. This is much better for me because if you do things mindfully, for instance, you don’t have to find time for a mindfulness session. I’m more likely to stick at things and remember to do them. My hobbies are important at the moment and I am delighted to see that it is becoming “normal” again to have hobbies. Years ago, people would ask each other what their hobbies were and they’d take pride in them. They weren’t always competitive things but were activities that provided a focus and brought enjoyment to the person. Hobbies have gone out of fashion in mainstream society but autistic people frequently have hobbies. Sometimes this is pathologised in my personal opinion, and is referred to as a “Special Interest”. I have friends who are comfortable and proud of the “Special Interests” label and they quite rightly say that their special interest is far more than a hobby. It is something they have an intense and deep knowledge about, something that brings them far more pleasure and satisfaction than the hobbies people tend to have does. I agree with them on that and to call their interest a hobby would be disrespectful and invalidate the importance of it to them or their incredible levels of knowledge, commitment and skill. This is the great thing about people though. We can disagree on things. I am totally cool with calling my friend’s special interest a special interest and she calls mine a hobby. There is no right or wrong and we both know what we mean.
What is important is that everyone can benefit from finding an interest or hobby. It gives a break from the day to day mundane parts of life. It provides respite from the stresses and strains going on around us. It enables us to put our energy somewhere productive and creative. My hobbies are fairly mainstream and this is not uncommon in girls and women who have autism. We tend to be more affected by social pressures and choose to pursue interests that don’t make us stand out any more than we already do. What I will say is, enjoy your hobbies and take an example from those unconventional people in society – autistic or not. I’m pretty mainstream with my hobbies compared to some people but still a little unconventional. Do whatever it is that brings you joy. If your interest is motorbikes and you’re a woman then so what! If you have a secret stash of animal bones in your garden that your husband doesn’t know about (oops! until now), then who cares!
These are strange times. People keep telling me this. They are right.
I feel fear of the unknown everyday because I am autistic. I crave predictability and feel stressed when my routine changes. I want to understand everything I can so that I feel in control, but there are some things that need more than an explanation to sort them out. I crave solitude and time on my own so that I can have a break from the overwhelming world. So please don’t feel sorry for me sat on my own or when I turn down an office party – I like being like this and I don’t want to be more sociable, it’s ok and I am alone but certainly not lonely.
There are valuable lessons to be learned from each other and I include all people in this – of every neurology, gender, sexuality, race, age or IQ. I secretly (well not so secretly now!) hope that many of the quietened voices in society will be heard during this time of reduced social contact. Those people that don’t thrive in a busy, social world; those people that are problem solvers every day of their lives; the innovative thinkers; the ones who find simple pleasures in life with total disregard for perceived status; the ones who aren’t heard because their voice isn’t communicated through speech or people simply don’t listen to them. If we are going to make a better world through this crisis then lets make sure everyone is enabled to play a part in it this time.