Maybe I Am Too Hard On Myself

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Stress. Pressure. Deadlines. Headaches. Four things which I have experienced in the last couple of days. I am only just recovering from the psychological effects of online abuse this week too. It is often easy for me to deal with abuse, given I was bullied for 15 years at school when I was younger. But something about this, felt different.

I’m very much inclined to come to the aid of a friend when they are feeling upset, pressured or targeted by other groups of people. But because I hate confrontation, I try to seek different routes for doing this. Sometimes it’s just an appreciation post on Facebook or tagging them in a Tweet. But then four hours later I was left feeling drained, worthless, and like a person with little value.

I am not used to being dogpiled online, which is why this particular attack ‘shocked’ my system. But I also felt guilty simply because I know that every bully’s intention is to seek a reaction (I know this from experience) so why did this particular event upset me so much?

The truth is, I am not the most up to date with the Twitter way of life, or indeed the Internet in general. Indeed, when I was younger I’d see comments saying: “This is the Internet, poppet”. This made absolutely zero sense to me, as in my mind it was something I already knew.

I often tend to feel like I am behind in social life. Behind in jokes, new trends, new fashions, new memes (I don’t really get them anyway) and other stuff. This makes it difficult for me to join in any conversations. I only discovered what the word ‘simp’ meant the other day when I saw a Brig article for it.

I am 25 years old. In most people’s minds (particularly people older than me) that’s young. To me, that’s inexperience, and slower learning curves with social media and social life as a whole. Stuff that I feel like I should have learned as a teen.

When something new to me such as ‘dogpiling’ happens, I am unprepared because I know nothing about it. And I think that’s why I felt so affected by this.

To that end, I did try to use this situation to suggest maybe my Labour Party society, or other societies could inform and spread some sort of awareness about how to deal with this sort of abuse online. But at the same time, I feel that it is my responsibility to educate myself on this as well, rather than simply relying on others.

I find myself constantly telling myself that I should be aware of what’s going on around me. The other day I was walking to try and clear my head. Almost suddenly (without any reason at all) I turned my head 180 degrees, and saw two cyclists riding towards me fast. I hadn’t even heard them, but I felt like there was someone behind me.

I quickly shifted to the side, of course.

I heard them say: “thank you pal” before I could turn around again to continue walking. Great, so I just received a polite reaction. But in my mind, I didn’t see them coming in the first place, so why didn’t I turn around sooner? That situation is impossible for me to have changed because I couldn’t sense them coming.

Fast forward to the end of this week. I had a mental health mentor session on Friday. She asked how I was doing with my work, and myself. I told her everything, how I felt lonely, anxious but able to keep up on my high workload and work to deadlines. At first she suggested maybe there’s something missing that could be preventing me from experiencing happiness.

But as I went on to tell her I had studied for many hours (longer than necessary) due to tight deadlines and found myself becoming isolated from my social life because of a disconnect between my academic level and the ability to talk to people about my work, the assessment then changed.

At the end of the session, she summarised her assessment, suggesting that I was being way too hard on myself because I was doing well, working on target to meet my deadlines, and have family and a small group of close friends to talk to. At first, I thought she wasn’t being serious and so I asked if there’s any resources online that could help me out.

But then the session was over, and we said goodbye (on the phone by the way). I pondered the thought over and over. I went to one of my group chats that Kalum was on to tell him what had happened. The result was that he was in agreement with my mentor.

Friends have been noticing something I haven’t, for ages.

The kicker was later that day, when I saw a Brig article about what success is and what success isn’t. Suddenly, a pattern formed in my head. Friends telling me I am hard on myself. Followed by a mental health mentor. Followed by articles that suggested success isn’t just one thing to work majorly hard towards.

After that, I thought about my online attack again. And I realised something.

I had been defending myself against people I didn’t even know. People who just wanted a reaction. I had allowed myself to ponder their thoughts and feelings towards me as if a ‘voice’ in my head was saying I am not good enough because I couldn’t satisfy them. This is a psychological effect which I also experienced when I was younger.

Being abused, being bullied (physically and verbally) makes you more concerned about people’s painful experiences. But it also made me incredibly self critical. I just didn’t think that people actually valued me much, or my opinions because if they did, I wouldn’t have been attacked.

In this way, maybe this effect sort of manifested itself.

I don’t know how to stop this from happening. I don’t know how to stop being hard on myself because others were hard on me.

I just want to succeed at what I am currently doing. That is, finishing my PhD work to a high standard, and then going from there. Friends tell me to take breaks, but this is often difficult especially when I am at home, and feel an even bigger disconnect.

I seriously think we need mental health advisers at University who are trained in understanding social isolation at postgraduate level. That’s one reason I campaigned to become Postgraduate Officer. We’ve been let down far too long and the University’s actions on mental health have had a negative impact on the student community.

But we need people who understand when we have large disconnects. It could be that one has a bad supervisor relationship, or that they experience isolation like me if they don’t feel like they can talk about science at a level they can understand. This is why I joined Brig.

I wish more could be done about this.

But at the same time, I wish my own self critical mind would somehow stop acting like I’m going to keep being attacked and shamed.

And with that, I conclude this writing. The manifestation of many psychological effects I’ve been going through during lockdown.

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Pathological Demand Avoidance

Autism spectrum disorder is not just black and white. There are many shades of grey in between. However there are also other traits associated with autism which may not follow a typical, or standard pattern when it comes to diagnosis. Often, people with autism exhibit common behavioural, sensory and social patterns. Such features include symbolic play, difficulty in understanding social cues, and a sensory profile which can be both hypersensitive and hyposensitive in nature, fluctuating accordingly. Development is often delayed, which leads me into this article. Pathological demand avoidance or PDA for short, is a developmental disorder. More specifically it is a pervasive developmental disorder (PDD) but it is now clinically recognised as being on the autism spectrum (1). It is important to understand that demand avoidance might frequently be common within people who refuse to follow simple orders. But the term pathological is applied to refer to the fact that when a truly pathological degree of demand avoidance is encountered on a long term basis, a diagnosis is more likely to be considered.

Criteria for pathological demand avoidance.

The following criteria is taken from Newson et al (2003). I have removed some language I believe isn’t the best way to describe symptoms and have included personal examples.

  1. Passive early history in first year: A person with autism might have a delayed or lack of social response, and empathy. It is important to note empathy here. Recent studies are starting to show that empathy is exhibited within people with autism and should not necessarily be treated as a social deficit (2). I have empathy myself which I express on a daily basis. A personal with PDA however, will often have delayed developmental milestones, and becomes actively passive later. A resistance to normal demands starts to form. A late diagnosis of PDA may result if characteristics develop through adulthood, meaning that even if a child did not have any delayed developmental milestones, they would still experience PDA in later life.
  2. Continues to resist and avoid daily demands of life: A person with autism may shut out any pressure, in a non-social manner, but be reluctant in doing so. This might often be done without consideration of other’s needs. They may prefer direct language. A person with PDA might feel this same pressure, but on a constant level. This is such that they devote themselves to actively avoiding this pressure. As a person with PDA develops language, strategies of avoidance become socially manipulative in the following ways. Firstly, by adaptation to that of the adult involved, secondly by acknowledging a demand but excusing oneself, thirdly by physically incapacitating oneself, fourthly, by withdrawal into symbolic play, and finally by reducing meaningful conversation. Examples are provided below:
  3. Surface sociability, lack of sense of social identity, pride and shame: A person with autism does not purposefully manipulate and might ask questions or make statements about their interests. In PDA, there is often no identity. A child with PDA won’t identify with children as a category. There is often no sense of responsibility (what may be expected of someone at a certain age), and there is uninhibited behaviour (unprovoked aggression, extreme giggling/inappropriate laughter, kicking/screaming in shop or school). They may not recognise adults as a status despite preferring them to children. Any attempt to punish, reward, or praise is ineffective.
  4. Lability of mood, impulsive, led by need to control: A person with autism works to their own rules, making it easier for parents to understand what upsets them and what doesn’t. They do not put on any acts for someone else, and as a result rules, routine and predictability help. A person with PDA may switch actions (such as thumping/cuddling) for lack of obvious reasoning. Moods may switch in response to any pressure (going over the top, protesting, fear, or even affection). Any activity must be on the person’s terms and if at any point the person feels that control is not in their hands, they may instantly switch activities. A personal example I have experienced is having a friend tell me that they do not and have never responded to authority. They may apologise, but reoffend, or deny any obvious wrongdoing.
  5. Comfortable in role play and pretending: Other than arranging objects, a person with autism may have a lack of symbolic play and will often look at things realistically. In PDA, a person might appear to lose touch with reality altogether, often using symbolic play as a coping strategy. They might behave authoritatively (like a teacher) to others, and will want to control events or other people. Indirect instruction often helps.
  6. Language delay, seems result of passivity: In a person with autism, language might be delayed or deviant, or even non-existent. Facial expression, eye contact, and gestures may not be commonly expressed. A person with PDA has a good degree of catch up, decent eye contact and fair social timing (when not interrupted by avoidance) and as such this may not be considered during an autism diagnosis. Their speech content is different: often discounting demand-avoidant speech. They may ask repetitive questions for distraction, signalling panic.
  7. Obsessive behaviour: A person with autism may be obsessive, but less so in the case of social topics. They like order and arrangements. In PDA, much of the behaviour discussed is carried out in an obsessive manner. Low level achievement in school/college may be prevalent due to a high motivation to avoid demands. For instance, a person asked to reference his work may fail to do so, and instead write as originally as possible using their own knowledge. However, their grade will be affected by a lack of credibility and critical evaluation of other work. Other obsessions are more social variant. Blame or harrassment towards others they don’t like, or overpowering in fondness for others, targeting of certain individuals.
  8. Neurological involvement: A person with autism shows less comparable involvement in actions such as crawling, and any situation which may go out of control. In a person with PDA, clumsiness is exhibited, along with physical awkwardness (late crawling). Absences, fits, increased excitability, or any episodic dyscontrol is commonplace.

Examples

  • Adapting to the adult involved: “Look, I’ve got you something!”
  • Demand acknowledgement with excuse: “Sorry, I need to do this first.”
  • Physical incapacitation: “I’m too hot/cold.”
  • Withdrawal into symbolic play: “My teddy doesn’t like this game.”
  • Reduction of meaningful conversation: *bombarding someone with speech*

Discussion:

Pathological demand avoidance is often misdiagnosed or mistaken for other clinical conditions. But research has shown that it is starting to be understood, with appropriate management strategies (1). It has been shown how PDA and autism are similar, but also how different features vary, making it complicated in terms of clinical diagnosis. Where autism management strategies such as routine, order and repetition are helpful, they are ineffective to someone with PDA (3). Thus, important distinctions have to be made within diagnostic criteria in order to provide better support. This article has outlined the underlying characteristics of PDA and provided a comparison to characteristics found in autism.

The reason rewards have been described to be a failure towards someone with PDA is because it relies on compliance (1). Newson’s study showed how his participants behaved in a way that may be seen as humiliating to peers. It also showed how compliance is just another form of control, making it far more unlikely for participants to respond effectively to reward or punishment. To the person with PDA, being asked to do something, with promise of a reward or praise at the end is challenging, because it is still a social situation that is out of their direct control since the person asking the demand gets to decide whether or not compliance or refusal is met with reward or punishment, respectively. Thus, indirect instruction and suggestion may prove to be more effective than direct or authoritative order. In contrast, people with conduct problems are strongly motivated by rewards (4).

There are at least 3 documented aspects that differentiate PDA from autism. Firstly, children with PDA have been described as responding more effectively to unpredictability, humour and spontaneity, which is in contrast to structure and repetition that is associated with autism (5). Secondly, unlike autism, there is a fairly balanced gender distribution in people with PDA (6). And thirdly, fascination and preoccupation of role play, and fantasy, and even difficulty to distinguish between reality and pretence is more characteristic of PDA, whereas people with autism might exhibit delayed or pretend play (7). The differentiating characteristics of PDA from autism make clinical diagnosis more difficult, and also more important.

In summary, while it is important that PDA is recognised as being on the autism spectrum, it is also important to employ different management strategies. Currently, educational or therapeutic practices for people with autism do not seem to suit those described as having PDA. Thus, education in this area to enhance clinical, and general recognition is key. Understanding neurocognitive bases of the pathological demand avoidance profile, and employing relevant, and appropriate strategies, as well as improved assistance and support will be the subject of future research and practice.

References:

(1) Newson, E. L. M. K., Le Marechal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood88(7), 595-600.

(2) Nicolaidis, C., Milton, D., Sasson, N. J., Sheppard, E., & Yergeau, M. (2018). An Expert Discussion on Autism and Empathy. Autism in Adulthood1(1), 4-11.

(3) O’Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: exploring the behavioural profile. Autism18(5), 538-544.

(4) O’Brien, BS, Frick, PJ (1996) Reward dominance: associations with anxiety, conduct problems, and psychopathy in children. Journal of Abnormal Child Psychology 24: 223–240

(5) Kunce, L, Mesibov, GB (1998) Educational approaches to high-functioning autism and Asperger syndrome. In: Schoepler, E, Mesibov, GB, Kunce, L (eds) Asperger Syndrome or High-Functioning Autism? New York: Plenum Press, pp. 227–261.

(6) Fombonne, E (2003) The prevalence of autism. JAMA 289: 87–89.

(7) Frith, U, Morton, J, Leslie, AM (1991) The cognitive basis of a biological disorder: autism. Trends in Neurosciences 14: 433–438.

Final say:

This is a personal research article I have produced in order to help people with autism, and people without autism to understand the characteristics of pathological demand avoidance, for educational purposes. Some of my own personal examples come from experiencing potential PDA within other individuals, even if there is no clinical diagnosis. As always, every person with autism is different, thus every person with PDA will also be different, but all share different characteristics which differ in terms of a sensory and social profile.

What to know about autism diagnosis

So you think you might be autistic? Have you been told by people that you might have autism? Do you see yourself as autistic? These are all questions that those of us without a diagnosis might have experienced. Feelings such as this are valid. In this article, I’ll offer advice and tips on seeking diagnosis.

Autism doesn’t just appear. It is often something which can be seen over time. This is why those who may have not thought they were autistic are told otherwise years later when they seek diagnosis. There is also the concept of masking, which I’ll get to shortly.

I am also writing this because I have had conversations with many of my friends here over the course of a few months. Many of them have ended with seeking autism diagnoses, whether this be from discovering new things about themselves after having read my content, or through direct conversation where I have picked a few things out that could suggest autism.

I’m obviously not a psychiatrist and so I cannot officially diagnose autism. However, I do know enough to tell you what you might expect and things you should do before making that initial appointment.

So let me take you through some of those.

1) Read content on autism

Usually the first thing you would do before doing anything is to understand what it is you are wanting to do. In this case it’s learning about what autistic traits and behaviours are out there, and just how diverse every autistic individual will be.

To do this, it’s good to spend some time looking up content on autism. Try to get the content from personal stories, and factual information instead of newspapers and magazines. This is because you’re often going to find conflicting information in the media about autism.

There are books written by autistic authors which you can find online and in major bookshops if you have a bit of money to spare for some quality information. If you don’t have this option, look for autistic creators online and ask for recommendations of where to find them.

Social media is a good source of information on autism, because you can find personal accounts there. One of your friends might be autistic, or might be sharing content about it. Use that to your advantage.

Are you interested in more intricate information? There are journal articles on autism which you can find online, particularly through the Journal of Autism, and Google Scholar. Most of the content is open access. You may not be able to access articles behind a substantial paywall.

2) Assess yourself

After you’ve spent some time drawing up information on autism, now it’s time to apply it to yourself. What do you notice after reading? Can you relate to anything you’ve learned?

My suggestion is to make a list of everything that you experience. This can include things from when you were much younger, to things that happen today. Ask your friends if they noticed anything about you from just talking to them?

Talk to family as well if you have that option. Can they remember anything about you when you were a kid? Did they note down any peculiar behaviours or activities?

As you begin to think of more things, your list will continue to grow. Eventually you may have a whole page full of personal experiences, and traits that may be used at the initial doctor’s appointment.

Take some online tests such as the Autism Quotient. Although this won’t be officially used to decide if you’re autistic or not, it can give you a good indicator of where you might fit in. You might notice situations you haven’t really thought about before when they are presented to you in questions.

Do you find yourself drawn to any particular objects? Take those objects with you wherever you go. You can take it to the appointment too, because it will give a physical example of what you do to seek sensory information, as well as maybe relax you throughout the appointment.

Remember to note down everything you come across about yourself, until you’re sure you have enough information to take to the doctor.

3) Book and attend the initial appointment

This can be with a GP, or any other specialist. But it will also depend if you are going through a private or public route. The private route can be very expensive, yet the public route might have you on a waiting list so please be prepared for either.

Have a friend or family member attend the appointment with you. This can be really good if you’re anxious on the day.

If you are too scared about booking an appointment, ask someone to help you with a script. Scripts can be useful to have written down, and it shows you have prepared yourself. You might speak to a receptionist first to book an appointment.

Say that you would like to simply book a doctor’s appointment. The receptionist does not need to know the details because she is not a specialist. If you are asked, however, just say that you need to speak to a doctor. Usually however, you can just book by asking for the next available appointment.

Don’t forget your list on the day. If you’re nervous, take an object you love, or something you can fiddle with like a pen.

4) At the appointment, give every detail

After you enter the room that your GP or specialist is in, they will often ask you what they can do for you today. Start off with saying that you believe that you may have autism and have your list out in front of you.

Give every detail possible to them. Mention stories and have your friend or family member also tell stories as well. If you are female, mention that you experience some of the stuff you wrote on your list, even if your friend or family member cannot recall it. This is because of masking.

Females seeking diagnosis are sometimes turned away from a doctor. To avoid that from happening, understanding how and when you may be masking can help to identify elements others haven’t thought about. Relay these to the doctor or specialist.

Talk about sensory issues you experience, in all of the 7 main senses. Maybe there are foods you cannot stomach, or a smell that you really dislike.

If things appear to be going well, you may be given a questionnaire to fill out. This will consist of some questions designed to identify autism through the medical definition. Depending on where you are, you may be given the AQ-10 which is the official criteria used by doctors.

If you are given the AQ-10, you may be referred if you score 6 or higher. Look up the AQ-10 before your appointment so you get a taster of it. If instead you are asked the 10 questions of the AQ-10 give detailed and honest answers.

If you are referred:

Prepare accordingly.

If the initial appointment goes well and you are referred to a diagnostic specialist such as a psychiatrist, then you now have to play the waiting game. For private patients, this could be a few days. For NHS patients however, it might be longer. There is currently a backlog of waiting times depending on where you are based and some autism assessments have been known to have wait times of 2 years or longer.

If you find yourself facing a very long wait, this is the time to prepare additional information. Look up more advanced concepts of autism. See if you can relate to any of the information.

Take more online tests that cover different aspects of autism and see where you fall under in the results. Neurotypicals often have very different responses to autistic people.

If you find yourself waiting for more time than you were told, chase it up. Check that you have a letter that tells you the date of the referral. If you have lost it, phone the GP.

If you are not referred:

If the doctor or specialist does not refer you initially, you are entitled to an explanation. Ask why.

You may feel defeated or low. This might feel like a blow but there are things you can do. First of all, seek a second opinion. Book another appointment but ask to see a different doctor. You do not need to explain why.

You can also change your GP surgery if you live within a covered area and feel that you might be more successful elsewhere.

You do of course have the option of going private if your second doctor gives you the same response as your first. This is incredibly expensive however, and it may be worth doing some crowdfunding to get the funds for it.

If you really cannot consider this option, it may be worth waiting a while to see if you can get the funds together for a private assessment. Or you can give it a few years and then try through the NHS again because doctors may have either changed positions, or left.

Be aware as well that if you do go for private, and end up with no diagnosis, it may feel like the funds are wasted.

Above all, if you do think you are autistic and have come out with no diagnosis, you are still welcome within the self diagnosed group that find the autistic community very welcoming.

5) At the assessment:

Let’s say you were referred, you waited and you are now ready to be assessed.

On the day, wake up early, eat and drink to give yourself energy. You may need it to answer questions and give stories.

The assessor is often a specialist in autism diagnosis and will therefore have a good understanding of diagnostic assessments. They know you might be nervous, and will try to make you feel comfortable.

Remember your list because it may come in useful answering questions and doing the tests. You will be presented with specific tests that assess your cognitive abilities. Usually autistic people can find patterns in these tests that others might not.

You may be given numerical and literal tests with numbers and letters. Often you will find patterns from both of these. It is part of the research.

Take a soft toy or something that keeps you comfortable and free of anxiety. If you find yourself getting overwhelmed you can ask for a break. Assessors often know that they may be a key part of impacting someone’s life. There is a personal human element to all this. Your break isn’t going to be penalised.

If you find anything about the assessment uncomfortable, say so. While you may not be able to change what tests you do, you’ll be able to offer feedback which can sometimes be valuable for assessors.

6) Read the final report

After your assessment has concluded, you will often have to wait a while for the final report to be released to you. You may be told on the day that you will have a diagnosis of autism, or you may be told that a report will be provided in the coming days.

Make sure to read through this report when it is released. It contains information for both the patient and their parents. You may be shown a graph that explains your hypersensitivity or hyposensitivity to the seven senses.

The end of the report will often include recommendations for supporting the diagnosed patient. This diagnostic information is also stored on your medical record, including the date of diagnosis and the doctor who referred you.

If you are diagnosed:

There can be different reactions. Some people may feel happy that they’ve successfully gotten an official diagnosis. You can now seek support from services such as the council, government, and others. You’re entitled to disability benefits and subsidies such as free bus travel in Scotland and employers can provide additional accommodations if you disclose autism to them.

However, some people may leave feeling shocked or anxious. This is because they may not have expected the outcome or because they now have to shift through a lot of hurdles to get access to additional support. In this case, providing information to the patient is important. The report should include such information for you.

Officially, you are diagnosed. If that’s the outcome you wanted, then that’s good. If it’s not the outcome you wanted, then over time you may find ways of coping, and will eventually still get the support you are entitled to.

If you are not diagnosed:

If the assessment report suggests that you do not have autism, or if the assessor has told you you are definitely not autistic, then this may be the end of the road. An outcome like this is something to prepare for. If you are sure there is something going on with you, then it may not be autism, but it could be another condition that shares similar traits such as misophonia.

If you are still happy to self diagnose, or believe that your assessor was wrong, you can try again in the future. You might have a bigger list which tells a bigger story. However, you must be prepared for the different outcomes as before.

Self diagnosed autistic people who do not get an official diagnosis after the assessment, may stop self diagnosing. This is okay. Some will prefer to remain self diagnosed. That’s also okay.

However, for those who may not have autism, and only wanted an assessment to rule it out, your reaction may be different. Nevertheless, it is important to understand that those of us in the autistic community do value their autism and will live life with it.

Lessons learned growing up

Reflections are often something which I think about a lot. I think talking about this subject is really important, because i helps me to keep track of what is worth my time and what is not. When Lauren came to see me this week and we were hiking to the summit of Dumyat hill, it was there where I was starting to think about how far I had come, but also how far I have to go. 10 years ago I could not have imagined being here in Scotland, studying a PhD on a topic I enjoy. This is because my whole life has also been a constant battle against ableism, discrimination and other prejudices that have been connected to a negative portrayal of autism. This may turn into a bit of a long personal story. Some of it may contain hard to read content, some content may potentially be triggering, so if you are suffering from mental health issues, please make sure you take care of yourself and only read this if you are able to. If you find yourself reading and experiencing triggers, I ask you to please not read on and to put yourself first. I will never advocate for the things I care about without putting my own health and wellbeing first.

This year I found out the true date of my diagnosis. January 1998, which means I was 2 years old, going on 3. I would have been incredibly young to understand the stories of other diagnoses. Indeed, a lot of them coming from friends I talk to about autism, and specific traits. This has led them to consider pursuing for a diagnosis themselves. For me, I have been autistic for 24 years. Mother used to say that the first thing I really did before speaking was singing. I’ve always had a love for all things music. Yes, even the music that groups of people judge. I think this just showcases my emotional response to things. This world is full of negativity and sometimes when I sit down to listen to music, it can be really therapeutic. From a young age I had perfect pitch, and could often tell if I was in or out of tune. I started playing piano from year 3 onwards, and still play today. In fact, of all the things I didn’t get bullied for in school and college, it was probably piano playing which helped me to get through it all.

I loved to express myself as a young autistic person. I found myself taking up dancing and gymnastics from a very young school age. From here, I began to experience horrific amounts of discrimination and bullying, usually from other boys. I remember being called weak, girly, and often other ableist terms that haven’t left the mainstream school playground. I had videos of me uploaded to YouTube and Facebook which mocked my street dancing, the way I walked, the way I spoke, and other stuff. At the time I wasn’t able to understand what was going on. What did it matter if I was getting so much hate? I just loved dancing so I continued to stick with it. It was through dancing that I developed the mindset ‘dance like no one is watching’. To me that means do what the heck you want in life. Do your own thing if you find it helps. Even if that means you’re getting abuse for it, (nobody deserves abuse) you’re doing what you personally love doing, and nobody can take that passion away from you. You may lose interest over time, but ultimately you’re the one in control of what you enjoy doing.

They do say that school was the best time of your life if you look back. However, this saying comes from a generation of people who had a good childhood, with multiple opportunities, both social and economic to make their impact on the world known as they do now. This isn’t the case for my generation. I grew up watching my gymnasium close due to council cuts, and therefore losing the chance to do gymnastic classes. I watched the youth clubs I went to close down, and as a result I ended up kicking a ball about in the local park as a way to keep active. This didn’t last long because the other kids eventually started making the park their prime time location. The football area would be out of bounds as you could not play if you ‘sucked’ at the game. The cost of clubs, activities and other things skyrocketed and I was left to my own devices. If you were from a deprived area, you were excluded from social activities. The popular kids at school would be the ones playing football at break times, while shouting homophobic abuse that was typical of the school playground at the time.

School lessons themselves were pleasant because I had really lovely teachers. At the time, the classroom environment was incredibly toxic. You were seen as a nerd or a smartass if the teacher praised you or gave you extra points. You were also seen as reliable if you attended school every day through an attendance certificate. This certificate could only be awarded for those with 100% attendance which is now seen as incredibly ableist for good reasons. But the truth is, I never 100% attended school. In fact, some days I bunked class not because I hated the class (I didn’t) but because I wanted to protect myself. There was one particular school break in which another guy bribed me for a free laptop if I kissed him on the lips in the middle of the school field. After I did so, the abuse increased significantly to the point my parents took me away from high school to keep me safe.

College wasn’t fun either. I started becoming very aware of the issues that I faced as a sixteen year old. The college environment itself was very difficult. I would find myself distancing from the main canteen because of toxic activities such as ‘pantsing’ which basically means you target anyone wearing loose bottomwear, then pull them down for fun. Suffice to say I don’t talk to the people who did that to me. I expected a lot better from a college environment compared to high school and I was wrong. Not only that, but this is where I faced my first major failure. I was awarded with grade U for both maths and physics at A-level. It was the worst feeling ever, especially on top of what I was facing personally. Looking back now though, it’s better to say that failure at some point is inevitable. We make mistakes. We are not perfect. It felt like my dream of being a meteorologist had been crushed by a terrible college experience. But it’s quite clear that other factors such as poor teaching methods were at play. The maths teacher eventually ended up on the sex offender’s register a few years after leaving the college. I always thought that something was particularly off about him.

Around that time, the family went through a hard time. I had my 18th birthday in Paris with both my parents, and it was lovely. I was able to fully bond with them both. Months later, that same year, there was a major hardship and my parents separated from each other. I felt like that spending family time together would now only be a distant memory and may not ever come to fruition in the future. Looking back, this is part of what life is. You’re going to face hard times, because nothing in this world is easy. Viewing it through that mindset allowed me to rationalise those feelings at times when hardship did hit, and I developed resilience through it. The same resilience was a result of all the hard times I had from bullies and haters.

At one of the worst possible times, shortly after my 18th birthday I experienced trauma. It will live with me forever. That night I was followed home by middle aged men, both wearing balaclavas. They were wanting to mug me for money. I was young and vulnerable and very scared. I had a knife held to my face, while one asked me for cigarettes and money. They were able to see I had no money on me at the time, so they let me go and did not say another word. I ran home in shock, not wanting to leave. Months later, I found myself feeling worse and worse. I plunged into a deep depression and felt driven to suicide. At this point, I acted and was able to get the support I desperately needed. It’s an event that still affects me today, it’s part of the life I grew up with. I definitely thought at the time that nice people always finish last. But I stayed. I’m here. I had a choice whether to end my life or to continue the story. The pain was horrible. The emotions I was experiencing were overwhelming. This was all real and it was happening to me.

After realising I may have failed in achieving my dream, I had to really evaluate what happiness and success really meant for me. It does not mean making lots of money, having a nice house, car or fancy clothes. In fact, happiness will always come from within, so I think setting goals like wanting those nice things is not the best approach. Sure, you could be successful and achieve those goals one day, but what then? Are you going to maintain your happiness with those nice things forever? This is what I wish to teach my future children. I realised that my goal for only being a meteorologist was not healthy, because I didn’t factor in the amount of work it would take, and also if I fell on hard times. Ultimately I didn’t prepare myself for failure and because of that, I was unhappy. Being happy is the journey and work you do to get to where you want to be. It is not the end product. Humans are never 100% satisfied with everything in life because a capitalist system means that resources are finite and as long as it can continue to give us shitty things to make more profits, its going to stay like that.

From then on, I focused on what I enjoyed doing, which was science as a whole. Could I become a researcher in a topic I enjoyed? Probably, if I had the guts to plan for it. And plan I did. From a conversation I had with my mother, I found myself going to university to complete my undergraduate and masters degrees in Environmental Science and Hazards. I faced hard times throughout this period as well. One of my major challenges was living independently away from the dependence of my parents. This started out in a small but very expensive bedsit through which I learned basic home economics such as cleaning ovens and changing my bedding. I also learned a lot about managing finances. I got my first taste of the gig economy as well, as I took a gap year after my masters finished working multiple agency roles just to stay afloat. I picked up some skills from doing that, such as housekeeping/cleaning, and factory machine operation. I was told at the time that work is work and I should keep at it. This is definitely true. You do have to work for what you want. And if you want to get somewhere where you can be happy and secure, then you need to work for that as well. Essentially, agency work taught me that you’re never far off from financial hardship because of a fragile job market for recent graduates, in which you must now accrue experience as well as qualifications.

My food shopping would be £10 a week, because I was on a low budget, essentially living in financial and appliance poverty. The kitchen I was in was small, and there was no washing machine or oven. One day I was so unhappy with where I was, having finished 12 hour shifts in factories and warehouses and hating every minute of it. However, looking back I wouldn’t change the fact I worked those shifts. If that is the working conditions you faced every day, just for a small amount of pay, it was work that had to be worth it. I told myself I wouldn’t be doing this forever. The only times I did have to stop working was when the environments became inaccessible, and sensory unfriendly as well as physically demanding which only added to the mental health problems and stress I was facing at the time. It was also around the same time I was being called a benefit scrounger, or a lazy person, usually from older folk who had fallen victim to scaremongering from tabloids such as the Daily Mail during years of austerity measures.

For those that will tell me I’ve never worked a day in my life due to claiming benefits, I can assure you I have worked my ass off in all places I have been, even if those places were full of toxicity. That didn’t stop my first eviction which made me essentially homeless in the summer of 2018. I was sleeping on my mums sofa as I began to desperately find solutions. It would not be until that summer that I started looking for future science work and I stumbled across PhD projects online. One particular university and project caught my attention which was the University of Stirling. I read the project description and everything about it was perfect. It fitted my needs incredibly. Upon sending a CV, I was informed the very next day I would have an interview in Stirling. After begging parents to fund parts of the trip there, I eventually took the interview in person, and was able to explore the area for a bit. I found the interview accessible, and engaging. The next day on the train home, the notice was through that I’d been accepted.

Just like that, my life changed. I came to Stirling in October 2018 and began a PhD in Environmental Science. 3 years later and I am now almost at the end of this chapter. Scotland is my home, the people here make it feel like home. Especially the friends I made here. I lost many friends from school after I made the trip up here, which told me that they didn’t value my journey. I did everything I could while I have been here. I joined the gym to get stronger and fitter. I attended political events and protests to spread my views of people, peace and the planet. I volunteered in the Student Union because I wanted to make other’s lives better. I joined clubs and societies that I didn’t get to join when I was younger. I formed my own society for disabled people. Simply put, I never want anything I went through to happen to others.

There are a few lessons I want my future children to know.

  1. That failure is a part of life, but it is also never 100% your fault. The society we live in has a role to play.

2. That good things eventually do come, but you must be willing to work for them.

3. To always be who you are, even in the face of prejudice, discrimination and hatred

4. To never see happiness as the end goal. Nice things are great, but they are not what makes your life good

5. To remember the position you are currently in. It won’t be like that forever. Things can and will change.

6. To reflect upon your own struggles and use them to better yourselves and help others.

Constructing my Autistic Sensory Profile

Introduction:

We need to talk about sensory profiles and what they are. Have you ever been told that you have high functioning autism or low functioning autism. Or that your autism is severe? If so, I recommend throwing those labels into the rubbish bin and focusing instead what’s called the sensory perceptual profile. As you will see in this article, the individual sensory profile of an autistic person is incredibly complex. The best way to think about it would be a mixing table, with hundreds of different faders, knobs and channels. Years ago, this would have never been talked about, but today it is beginning to become more recognised, and appreciated. As I’ve grown up, I’ve started to hear the functioning labels used much less, especially as the sensory profile, which every single autistic individual will have, is becoming more prevalent.

What is a sensory profile?

The sensory perceptual profile is an individual idea of your own sensory and perceptual needs. It is the record that tells others how you respond to sensory information, and how you perceive the world around you. When somebody tries to tell you that everyone’s a little bit autistic, you turn around and tell them “Actually no that’s not true, for we each have an individual sensory profile that we use to gain support and advice.” Because the sensory profile is your individual ‘evidence’ of how you respond to sensory information, it does not mean that a neurotypical will need one. However, what neurotypicals can do is try to understand the structure of the sensory profile, and use that to find or provide reasonable support, help and advice.

The sensory profile is a complex and quantitative presentation of sensory data. It can be presented using graphs due to categorised data. It can also be shown on tables. However, the building of a sensory profile can take time, because there is so much that goes into it which I am going to briefly discuss. In order to construct a sensory profile, you need a huge list of propositions/questions. And for this analysis we are going to use the Sensory Profile Checklist from Olga Bogdashina’s book Sensory Perceptual Issues in Autism and Asperger Syndrome. It contains a total of 232 questions that must be answered. How you answer the checklist is you answer True to any questions you agree with, False to any you don’t, and Was True if it was true in the past but is not now. So for example:

1: Resists any change. True

11: Is attracted to lights. False

I will not include the questions here, but you can find them in Olga’s book, or you are free to contact me if you’re autistic, and interested in finding your sensory profile and I will send the checklist for you to answer. Use Excel for the checklist. It will be a lot easier to work with.

Categorising the questions

The next step is to separate the questions into the 7 sensory categories. These are visual, auditory, tactile, olfactory, taste, proprioception and vestibular. To make it a bit easier, I would suggest highlighting each set of questions with a colour. So visual questions are red, auditory orange and so on. You also need to separate the questions into each different sensory and perceptual styles. I will discuss these below. It is important to have the 7 sensory categories and the 18 different styles in order to get a better picture of your sensory profile.

Hypersensitivity – When there is too much sensory information. Acute, heightened or excessive sensitivity

Hyposensitivity – When there is a lack of sensory information. Below normal sensitivity

Fragmentation – Fragmented perception, when too much information needs to be processed simultaneously, as it is not possible to ‘break’ the whole picture into units/objects, but instead process the picture bit by bit

Fluctuation – Inconsistency of perception, when an autistic person might be hypersensitive to stimuli one day and hyposensitive the next or vice versa

Distortion – Distorted perception, the change in the perception of the form, space, sound.

Sensory agnosia – Difficulty with interpreting a sense, (putting a meaning to the sensation)

Delay – Delayed perception, a delayed response to sensory stimuli where it can take longer to process the information

Sensory overload – Becoming overloaded with too much sensory information.

Mono – Mono processing, where only one modality is processed by the brain before others to avoid overload

Peripheral – Peripheral perception, avoidance of direct perception such as eye contact

Shutdown – Too much sensory overload could result in some or all loss of functioning altogether

Compensation – In order to make sense of the environment, one sense is compensated by other senses, such as smelling food before eating.

Resonance – Fascination of certain sensory stimuli in which one may lose oneself in such stimuli

Concept formation – Aspects of perceived experience stored in memory that form perceptual symbols (images) used for future reference. For example: from touch, perceptual images of textures, pressure and temperature is formed.

Perceptual thinking – The systems that process visual-spatial information.

Synaesthesia – When the stimulation of one sensory modality triggers a perception in one or more different senses. Example: when a sound triggers the perception of a colour.

Prosopagnosia – This is face blindness, where one has trouble recognising people’s faces, emotions, gestures, body language and expressions.

Gestalt perception – The inability to distinguish between foreground and background information.

Methodology:

Now that the data is all separated into sensory categories and sensory perceptual styles, the next step is to count the amount of questions for each style and each category that you answered True, False, and Was True to. For example, if you find 5 hyposensitive questions that you answered True to, you would count 5 for that style. Similarly, if you find that you answered 10 True and 5 False to the visual sensory questions, then that is what you would record.

To make hypo/hyper graphs, find every hypo and hyper question that you answered True, False and Was True to. And to find how hyposensitive or hypersensitive you are to each of the 7 sensory categories requires a few more steps. Go category by category. So for example: Find how many of the hypo and hyper questions in the visual category you answered True to. Because we are interested in the current profile, we need to take the Was True answers and opposite them. Any Was True answer on hypo, would add one answer to hyper, and vice versa. The same for False answers. Any False answer for hypo, means it should be hyper. This will take a bit of time, but it is worth it.

Results:

In this section, I will show my individual sensory profile. First of all we have the sensory perceptual styles.

Figure 1: Sonny’s sensory perceptual style profile. True answers are presented in green, False in red, and Was True in blue.

The first thing to notice is that I answered a lot more hypersensitive questions to hyposensitive ones, which will lead people to think I am more hypersensitive than I am hyposensitive. But as I will show later with the different sensory categories, it is a bit more complex. It is also evident from the concept formation that I have a good memory for all senses and am able to create images in my head from each one. Interestingly it does seem that I can sometimes fluctuate from hyper to hypo, depending on the environment or situation. But it does show that I fragment a lot of information bit by bit rather than the whole picture, with some of that information being processed more monotropic than other bits. I am very good at visual-spatial processing as evident by the perceptual thinking data. When I was younger, I was more vulnerable to sensory overload. So while the data shows a small amount of potential overload, I definitely still do get it from time to time. There is only one question for prosopagnosia which justifies the data here. A high resonance suggests that I find some specific stimuli fascinating, which I do.

The next graph in Figure 2 shows the hypo/hyper data for every single question.

Figure 2: Hypersensitive/Hyposensitive graph for the whole checklist

Once again it suggests that I am more of a hypersensitive autistic person than a hyposensitive one. But this is too generic and does not tell us for which different sensory category I am hyper/hypo to. This follows in the next graph (Figure 3).

Figure 3: Hypersensitive/Hyposensitive graph for each sensory category

Now we can start to build up a picture. I am mostly hypersensitive to each sense, except for tactile. This is true given that I love being hugged, and am touch starved so I actually wish for more tactile information in this aspect. But only wearing specific clothing, and hating neck or wristwear still makes me rather hypersensitive to tactile stimuli as well. It is evident that I am most hypersensitive to sounds, which makes sense given that I feel as if I have a very deep hearing. I can hear the bubbles that rise to the top of a cup when a carbonated drink like Coke is poured into it. I have to cover my ears a lot to certain sounds that I hate. I am also extremely hypersensitive to light, and prefer to work without sunlight and prefer to stay indoors during very sunny days. My sense of smell is good but the variance is low here. I hate the smell of petrol, exhausts and incenses but love smells like lavender, new books, and petrichor. I am very hypersensitive to specific foods like pickles, onions and mushrooms, and spicy foods like chilli and jalapeno peppers. For proprioception, I do not tend to feel hungry or thirsty and will forget to eat or drink at certain times of the day. I also like to look down a lot, or focus on my hands and feet if I’m moving and I have never been able to ride a bicycle or scooter. Finally for vestibular sensory, I get very motion sick, and do not like moving too fast or spinning around much, but I can also not notice heights, or long distances.

Finally the last graph (Figure 4) shows each different sensory category by each different answer.

Figure 4: Sensory categories by each answer to the questions

I answered true more to questions about auditory stimuli, followed by visual, proprioception/tactile, olfactory/taste and vestibular. Interestingly I also voted false more to visual questions and the least amount for proprioception. Overall I answered True to most of the questions in all seven categories. It is important to note that this does not change the hyper/hypo charts in Figures 2 and 3, given that for this graph, the questions in each category include all of the sensory perceptual styles.

Discussion

The individual sensory profile can be created using both sensory categories and sensory perceptual styles. This analysis is not however without its limitations. Autism is incredibly complex. There are probably far more than the amount of styles used here. Despite 232 questions of the checklist, there are certainly plenty more questions that could be asked, which means more data. However, due to the complexity, and brevity of the subject, a good sensory profile for the purpose of showing others is still valid using the categories and styles outlined above.

It is also important to state that the checklist comes from only one piece of literature. Therefore, more checklists in the future may be created with more or less questions and depending on more or less categories or styles. Olga shows that the sensory profile checklist can be created into a rainbow chart or table, but here I extend the checklist to graphs for easier interpretation. Additional checklists may be found in other primary literature.

Finally, it is worth noting that the sensory profile will change over time, so each individual sensory profile cannot be used to present an individual’s sensory perceptual issues for the whole of their life. This is why I include a Was True result. It is easy to remove the Was True data to ensure that you are showing the most up to date sensory profile. On the other hand, if you wanted to do a historical sensory profile to show that profiles do change over time, you may have answered the questions as if you were younger, and thus, created different graphs. In the future, an autistic person’s sensory profile will always change. Trends may stay similar, but the answers to each question will be different, especially if some things were true for you back then, but in the future are not true now.

Conclusion:

In this article, I show my own quantitative sensory profile. It is created using 7 sensory categories, and 18 sensory perceptual styles. A checklist of 232 questions is separated into the categories and the styles, with each answer recorded as True, False or Was True. I produce four graphs using this data. Overall it seems that I am incredibly hypersensitive to sensory stimuli, except for tactile information where I happen to be more hyposensitive. Since I also answered True to most of the questions, we are able to see which category I am most resonated to, which for me is auditory stimuli. Each different sensory perceptual style also makes up my sensory profile, with some complex discussions such as fluctuating from hypersensitive to hyposensitive. Furthermore, sensory profiles are a much better way of showing autism rather than harmful functioning labels which are also too simplistic.

Acknowledgement:

The checklist is found at Olga Bogdashina’s book Sensory Perceptual Issues in Autism and Asperger Syndrome. None of the questions were changed or removed.

Contact:

Please contact me if you would like a copy of the checklist or the Excel spreadsheet to make your own sensory profile.

Even the Smallest Things Can Be Sensory Nightmares

Introduction

I thought I would write this as I am on a large social media detox, just to get a bit of a break. With a little bit of time to myself, I have a bit more time to write about my thoughts. Lately, I’ve been struggling a lot with executive dysfunction which has caused me to do things a little bit more slowly. And speaking of the word little, I thought I would talk about some of the little things that cause me and other autistic people sensory issues. Not a lot of people see what goes on behind closed doors, so it is often difficult to document and talk about something that others who are not autistic would ever even consider. From brushing teeth to eating, here’s some of the more obscure issues that no one really talks about, at least in my experience.

Brushing teeth

It starts when I wake up. After executive dysfunction tries to take over, which some days it does, I find myself getting up quite late in the morning. This has been quite common during the coronavirus pandemic. A bit of breakfast and then I face my first struggle of the day: cleaning teeth. The issue isn’t so much the fact that I forget to clean my teeth. It is more to do with the sensory information that brushing teeth releases. So first, let me tell you I absolutely despise mint flavours. It has such a hypersensitive sensation inside my mouth, and makes food and drink taste awful after. Mint is common in a lot of conventional toothpastes. It’s also the reason mosquitoes love me in the summer, so I have to take that into account, which is annoying because having mosquitoes on me introduces touch information and that can be off-putting.

So as soon as my toothpaste runs out, I’ll be investing in a flavourless sensory friendly toothpaste that will make it easier to brush my teeth. The other sensory issue that happens during teeth brushing is the vibration of an electric toothbrush on the teeth. This isn’t so much of an issue for me, but it can lead to sensory overload if I’m having real difficulties that morning. And mouthwash isn’t any better because it has incredibly strong oral stimuli just like conventional toothpaste. We need sensory friendly products on the market, and with the rise of diagnoses in autism, this may become more important in the future.

The humble toothbrush or conventional toothpaste can cause sensory overload to some autistic people. Pexels.com

Skin care

A skin care routine appears to be something a lot of other people do. This is a relatively new concept that I did not really have much knowledge on as a teenager. What I do know is I had a lot of spots and redness. My nose is always red for some reason or another. I also have incredibly dry skin, which has been made worse by some of the products I was using. But to the main point. The issue with skin care products that I have been using at least, is that they leave a bit of a stinging sensation on my face, which is rather difficult to deal with, given I don’t like really hot or cold things touching my face. The other issue is the scents that some products leave, some can have really strong aromas. It’s a bit like me smelling a Lush shop from 100 metres out, given the strong aromas that shop always gives off.

It’s important that I find some sort of sensory friendly product that actually doesn’t lead to more dryness than I already have right now. That is going to be a difficult venture. Skin care seems to be very individual and everybody will respond differently. Another issue with skin care products is that some have a grainy texture and therefore can be quite difficult applying to my face. So it’s not a smooth application. Dryness is just a problem I’ve had for years, and things like wet wipes and flannel washing never worked. It will be a mission of mine to find the right product for me in the future.

Other products like deodorant can be sensory nightmares to some autistic people, depending on the brand and the strength of the scent it leaves. As a result, I don’t have many brands that I know work aside from Lynx. And because I don’t like my armpits being touched, roll on simply isn’t an option for me. So my entire routine is just very complicated to get right, and can be a major struggle on bad days.

Skin care is important, but could be a sensory nightmare for autistic people if the wrong products are used. Photo by Sora Shimazaki on Pexels.com

Clothing

With teeth brushing and skin care out the way, most people wouldn’t think twice about choosing what clothes to wear for the day. Unless you’re autistic, like me. I actually happen to have clothes that I can wear for a few hours before they start to get uncomfortable and overwhelming. Or there are some clothes that I don’t like to wear at all, such as jeans. Most jeans have metal buttons on them. And metal is cold. Very cold. So wearing jeans is a big no for me because the metal button can end up touching my skin. The way for me to get around this isn’t ideal, but it involves pulling my boxers up a little bit more to cover up the area that would usually get touched by the button. I will only do this if I know I have to sacrifice comfort for style when I’m going out for a meal at a top end restaurant.

I also struggle with doing up buttons, laces and zips still. Even if I can actually do them (which I can) I don’t do them very well. My laces aren’t the tightest when I do up my shoes for instance. Getting them tighter isn’t something that’s easy for me to do. So big boots and shoes that have laces would take me a while to lace up. It is better than when I couldn’t do them at all I suppose. I also can’t wear anything round my neck or my wrist, because I am incredibly hypersensitive in those areas. I’ve never been able to wear a watch, or any form of jewellery. But thankfully I don’t get told I have to so it is fine. As long as that never has to happen, of course.

Wearing jeans isn’t easy for some autistic people. Photo by cottonbro on Pexels.com

Showering or bathing

Water is wet. We know that. What we might not know is that water can be a sensory nightmare for some autistic people. Especially me. I was the kid that hated water pistol fights in summer. I was the guy that would take at least 10-15 minutes to get into a swimming pool, and even longer if it was the sea. I am very sensitive to temperature changes, especially given the fact that water has such a high heat capacity. Because of that, it takes a while for the body to adjust to being in the shower or bath. But for me, it takes even longer. And the feeling of getting out the bath or shower is also hard because it feels super cold. The water dries and leaves the body, taking all the body heat with it, and leaving you feeling really cold when you step out the shower. This is even more the case when you have draughts coming through or the window is left open, or the radiators are off.

In addition to the water itself, what you add to the water in a shower or a bath is also crucial for some autistic people. Because like skin care, and like oral care, products like shampoo or shower gel or bubble bath can also carry with it unfriendly smells. We have to be really careful with the products we use, and ensure it doesn’t cause a sensory overload when using them.

As a result, my shower or bath is often one of the hardest parts of my everyday life. I talked about it in more detail in a previous article, but I just thought I would reiterate it here. While I have been in cold water, for instance when I was baptised in the sea, I have also gotten out of doing things that involve water, hot or cold. An example is when I opted to take the ALS Ice Bucket Challenge. Except the water wasn’t icy. It was just wet, and I allowed myself to have water poured on top of me and my clothes, which was one of the biggest sensory nightmares I could never have imagined at the time. But it’s not just cold water. Hot water too. I can’t stay in hot tubs or a jacuzzi for too long either before I feel like I am overheating.

So yeah, I don’t quite fancy being shot at with a water pistol, or going on one of those safari trips where they purposely drive underneath sprinklers or falling water, or splashing through a lot of mud. It doesn’t bring fun to my life, it just brings sensory nightmares and a lot of exhaustion.

Bathing water needs to be sensory friendly. Be it hot, cold, or have a particular product with a tolerable scent. Photo by Elizaveta Dushechkina on Pexels.com

Laundry

I touched on wearing clothing above. But I didn’t cover washing that clothing. Guess what, I’m sensitive to that too. So I have to be careful with what chemicals are making my clothes smell nice. But some scents I am actually quite hyposensitive to. That means that I like the smell of some things. And lavender just happens to be one of those. So all my clothes get a bit of lavender thrown in the mix when I wash them in the washing machine. But just because lavender is fine for me, does not mean it is okay for everybody else. In fact, if I had a partner in the future that had a bad reaction to lavender, then I would not put it in my laundry. But some scents I absolutely cannot stand, so choosing what goes into my laundry has always been important. When you’re shopping for laundry detergent, open the cap and smell it to ensure it’s a smell you like. If it is a powder detergent you can smell the outside. There’s nothing wrong with sniffing the detergent to ensure you can tolerate it, even if people think otherwise. Thankfully there are also brands that don’t have scents, ideal for those who have chemical sensitivities to perfumes and other aromas.

If you go to a launderette to wash your clothes, then it’s really important to understand that combined smells can become overwhelming and would make it a nightmare for autistic people. We could try to wear a protective mask like we currently do with the coronavirus pandemic, but some autistic people also struggle to wear masks due to the hypersensitivity of the area the mask touches. Another option would be to take a walk outside to limit the exposure to the smells, or to go when it’s less busy. Which is also ideal if you don’t like busy locations.

I also hate touching dirty clothes, which I know a lot of other autistic people struggle with as well. So wearing gloves is ideal in that case, as then I don’t have to feel them in my hands. Gloves can be made of various materials, and I personally like latex. But some may prefer vinyl or cloth as well.

If you’re doing laundry at home, the noise of the washing machine can also be off-putting which it is for me. Washing machines start off quiet, but they get louder as they start to go through the spin cycles. So the only way I can tolerate it is by staying in a different room throughout the washing procedure. Not to mention the washing machine also vibrates and certain frequencies can shake the room you’re in, which just adds another layer of sensory information on top of the noise.

Not only does laundry introduce smells to your clothes, but it can also be noisy, or difficult to touch. Photo by Adrienne Andersen on Pexels.com

Light

This one may come across as being ironic to some readers, given I have a fear of the dark. But, when I wake up in the morning, I am reluctant to open my blinds. Because I know if I do, I will have a sensory overload. Exposing myself to brightness so early on actually hurts. And similarly when I am studying, I like to do it without too much natural sunlight. Not ideal on a very bright summer’s day when you’re trying to get a lot of work done. Definitely wasn’t ideal at school when all the blinds were open and as a result, I struggled to concentrate because it was too much of a distraction. Not only do I need it to be quiet when I study, but it also needs to be dim enough for me, too.

It feels like I get a big headache if I were to open my blinds in the morning. And the glare of my laptop makes it hard to study if there’s natural light coming in. So the only way I have managed to find a way to overcome this is to study with my blinds closed. It’s easy to miss something if I don’t do this. I tend to wear sunglasses a lot outside on a hot or sunny day. I rarely go out on walks to get sunlight and thus, Vitamin D, so I take a multivitamin supplement.

That’s just at home. Now imagine fluorescent lighting in a big shop, department or other large indoor space. It’s very sensory unfriendly. The way to get round this would be to ensure schools, colleges and universities have sensory rooms with dim lit and mood lighting such as rotating disco lights and fibre optic lamps. The rotation of the disco lights makes it easy to follow the light patterns on the wall. It therefore allows my eyes to focus and look around places a lot easier. Fibre optic lamps and other sensory lighting can also change colour, which makes it easy to feel comfortable. On my smartphone I filter the blue light out because it causes pain if I don’t. I’d hate to be one of those drivers who is driving at night and a car with the brightest most painful headlights in my face comes towards me.

Natural light can be painful in the morning for some autistic people. Photo by Adam Kontor on Pexels.com

Background noise

As I live on a rather busy road, I’m subject to a lot of outside noise that can become a distraction. Often times it’s the cars in the petrol station opposite my flat. And we all know that I am the most sensitive to vehicle noises. Can you imagine what it must feel like to sleep at night with these noises in the background? Well, the way I got round this is to have white noise. An electric fan can easily solve this problem. So to sacrifice adding a bit of cost to the electricity bill, I have my fan on every night to drown out the vehicle noises. There is a really loud lorry that comes in the early hours of the morning to deliver milk. With the fan on, I can sleep through it. But sometimes I have had problems. I once had a power cut happen in the early hours of the morning, making sleep impossible. As a result, I had to go to a friend’s house for the night. I would rather tolerate being in a different environment with a minimal amount of noise than have to hear the vehicle noises because my white noise wasn’t able to be generated.

Other background noise just causes a distraction, but if it’s on top of other various noises, it can add up and cause a sensory overload. When I took exams at school, I had to avoid the big sports hall because shoes on the sports hall floor made horrible squeaky sounds. And sounds from polystyrene boxes or other items can cause grima, which is when you get goosebumps and shivers from hearing really bad sounds like chalk on a blackboard, rubbing sandpaper or shoes rubbing the surface of a hard floor, especially when playing indoor sports.

The electric fan is good for white noise. Photo by Enrique Zafra on Pexels.com

Conclusion

Sensory issues aren’t just loud and busy crowds, strong smells like those in Lush or incense, or eating certain textures which are more commonly talked about. They are also everything I described above, from getting up in the morning to brush your teeth, to washing your laundry. Each experience differs between autistic people, and is dependent on their own individual sensory profile. You might be hypersensitive to lavender while another might prefer the stimulus that lavender can provide. You might never think about an autistic person trying to wash their laundry and the various sensory issues that they may face. You may have never thought that toothpaste can be a sensory nightmare to some, while the vibration or touching sensation of a toothbrush on teeth can be problematic for others. It’s information that doesn’t get talked about. However the more we autistic people talk about these experiences, the more easier it is for people to help, and support us. I always encourage you to be as open as you are comfortable. I am sharing my experiences for the world to read. I hope this resonates with some of you.

Feature Image Credit: Pexels.com

Why the long face?

It’s a question I get asked a lot of the time. Sonny, why do you look so down? You don’t look like you’re happy? Are you okay? Why aren’t you smiling? So it’s no surprise to me that I’m not really phased by it anymore. We need to have a talk about it, though. And to do that, you have to understand the differences between neurotypical perceptions and autistic perceptions when it comes to happiness or general contentment.

The truth is, I do smile. Quite regularly. But to you, it probably comes across as me looking grumpy or down, as mentioned above. However to me, I’m quite literally using all of my muscles to smile, and I feel myself doing so. So why does it not look like one of those typical smiles with all the teeth showing? It’s because of something called the flat affect. The flat affect isn’t just found in autistic people like myself, but also with any other neurodiverse condition.

Autistic people also mask. A lot. Particularly autistic women, but I also do it as well. Usually in public when I’m on public transport, or when I’m talking to someone. The effort that goes into masking just to look like you fit in, depending on the appropriate situation (like a business meeting, or a dinner party) is overwhelmingly high. While everyone else smiles for the camera, I smile in my own time but it will go unnoticed. I can also mask when I’m feeling low as well. In fact, that’s probably when I do it most.

But the flat affect is something that isn’t talked about enough.

Below are photographs of two smiles. I like to call one of them a ‘neurotypical’ type smile because it’s exactly what I see in general day to day life. The teeth show, the eyes are open wide, brows up, and lines under the eyes. It’s exactly what you’d expect a normal smile to look like. The only difference is, it seriously hurts. A lot. It takes so much effort to force this kind of smile, usually for a camera. And it’s why I don’t like it.

Me and my brothers, summer 2020

Okay so let’s talk about it. You’re probably thinking it’s a lovely photo. I’m actually masking a lot in it, though. This was before the day I was leaving to go somewhere else, and knew I wouldn’t see my brothers again in a while. So actually I’m feeling sad in this photo. It is a neurotypical type smile for me. Frankie’s smile is genuine. He genuinely looks happy in that photo, and it shows. My eyes are far wide open, which is what happens when you try to smile like that for ages, you can’t narrow your eyes. You can see most of Frankie’s teeth whereas you can only see my two middle teeth. Honestly I don’t like myself in this photo at all. But it clearly shows a perfect example of how much effort it takes.

Now take a look at this photo.

Me today, winter 2020

This one, I’m not masking at all. But the flat affect is clearly visible. So it probably doesn’t look like I’m happy at all. You might even think I’m hiding something here, but the truth is I’m not. This was taken right after my hair cut, and because my hair is so hard to manage anyway when long, it was just liberating to take this photo. This is how I prefer to look in photos. This is my genuine sort of smile. The one above took effort, that this one didn’t. So even though there aren’t any lines under the eyes, I still have wide open eyes and I even moved both my ears back. (I can do that).

I’m now going to show a couple more photos.

Autumn 2020, Ben Cleuch

This one was taken on top of Ben Cleuch, which is the tallest mountain peak in the Ochils, the mountain range right by my flat. Yes I have a big frown line in the middle, but I have that on almost every photo. I’m not actually masking here. It was just bright when I took the photo. This is probably as close to the ‘acceptable’ kind of smile I’ll get. It was just liberating being out on the top of a mountain. Clearly the flat affect is visible in this smile because I’m not trying too hard.

And finally, this photo:

Summer 2020 in Edinburgh, taken by Chloe

The flat affect is visible in this one, but I am happy in this photo. I’m not masking. The smile lines aren’t as defined as in the Ben Cleuch photo. But to me that doesn’t matter. I shouldn’t have to conform to one’s own expectations anyway. If there was less pressure on people to smile, I know that I would feel more genuine and valid.

And that’s what the flat affect is. It’s a trait in which physical and emotional expressions are reduced. And it doesn’t just have to be smiling. Maybe it’s part of your voice or the way you speak too. Because some autistic people have more of a monotone than others. I don’t exactly vary my pitch much when I speak, particularly because that to me, also takes a lot of effort. There’s just no point (in my opinion) to expend energy that isn’t needed.

But the flat affect is not without it’s share of disdain. A lot of people on the street appear to look at me with some sort of dislike. Or family members will tell me I should smile more. Or that I should express myself more. The point is, I already do.

And that’s all there is to it.

This is ‘Literally’ Something Worth Talking About

Hope you are ready for another one of my rambly posts. I guess that is my style. Literally. Oh and you might notice I use the word ‘literally’ a lot. Literally! Because, this post is literally about how I interpret non literal language. What do I mean by that? I’m not very good at grasping a lot of humour, jokes, memes, and other language, and I want to go into a bit of detail about each. So this is literally an article about that, no joke! Okay, enough of my play on words. I’ll just delve into each one individually and let you know what you can do to support me.

Humour

Humour in this case refers to the many jokes on the Internet. But humour itself is also one in which I could write an essay on if I wanted to. This is because humour is divided into categories like most topics. There’s probably a lot of ways to categorise humour, and what I might write here may be different from somebody else. It might also be worth noting that friends report me accidentally engaging in these types of humour. While that might be true, I often fail to notice, or fail to grasp why if I do. However, I feel like it might have something to do with my desire to be part of my friend’s conversations, the communities I have, and increase my support network.

Sexual humour

The first type of humour I’m going to talk about is related to sex. Sexual humour includes innuendos, and memes, in this case. It is important to note that I have a very limited knowledge and understanding surrounding this topic. You will notice that in a group of people, I may not laugh at any kind of sexual humour. Any laughing I do engage in is more likely a result of others laughing, because some people’s laughing can be contagious. In other words, hearing someone laugh out loud, or to the point of exhaustion might also get me laughing, but not for the same reason. It is akin to yawning because someone else does, almost like a natural reaction that isn’t happening for simultaneous reasoning.

“I have to warm up my fingers in order to give a better performance”

Sonny Bailey

While I might be able to grasp that sexual innuendos are a form of humour, they certainly don’t occur to me whenever I talk and as a result, I’m very well known to make statements that prove to be hilarious to other people. When this happens, I find myself either stimming, covering my face, trying not to blush, or avoiding any form of eye contact. I might shy away from reactions, including from family as well as friends. I’ve often wondered if this peculiar trait I have would make me a decent comedian. However, a comedian would 100% understand the humour they are using, and thus apply it properly to get the reaction they are after. Whereas I am not looking for a reaction in any way, so it comes as a surprise when that reaction is the one I get.

Photo by Amal Santhosh on Pexels.com

The idea of being known as someone who is rather innocent has both a good and a bad side. The good side is knowing that my friends and family are not actually mocking me, while the bad side is wishing I could join in on those humorous like conversations, and worrying that I may be seen as someone incapable of socialising in this manner. I have had people tell me that my innocence and purity is rare and I’ve had people tell me that they love me and that I should never change. But the same cannot be said for other autistic people I know, who also seem to grasp this form of humour quite well. Therefore I am definitely the odd one out in this regard. Whether or not I grasp this kind of humour later in my life remains to be seen. But I sadly doubt so.

Dark and satirical humour

Tying in with my well known innocent/pure nature, it would seem absurd for me to exhibit any dark humour within my idiosyncratic demeanour

The next kind of humour that seems quite common on the Internet is dark and satirical humour. These appear to go hand in hand with some comedians and Internet users, while for others they might be separate. Satirical humour can be divided further, often based on politics. This makes it a little less challenging to interpret, but it also depends on the way the humour is presented. As a verbal statement said in person, or on an audio clip it wouldn’t occur to me. Seeing it written down or with some visual aid might make it a little bit easier. But even then, it’s not easy. While I do seem to grasp articles from NewsThump, the Onion, and Southend News Network, this week actually, I struggled to interpret a political meme which was based on biological sex, and political stance.

Dark humour, however, is far more of a challenge for me to grasp, let alone even understand. I know plenty of my friends use dark humour a lot. In some circumstances, it seems like it is a form of coping mechanism, while in others, it is actively used for a shock factor. Tying in with my well known innocent/pure nature, it would seem absurd for me to exhibit any dark humour within my idiosyncratic demeanour. And so you won’t ever hear me use it. Instead, if I find something that might look to me to be something dark or morbid, I’ll often share it with a satirical friend such as Kalum.

Fatalistic humour

This type of humour didn’t actually occur to me that it might exist until I read a Tumblr post about it. That being said, fatalistic humour is not something I use. It is humour that seems to have developed as the Internet became more popular, and as someone who grew up without a laptop before 16, this humour doesn’t make it into my vocabulary or speech. There are easier to understand forms of fatalistic humour such as “KMS” which often follows the end of a tweet or short Facebook post. However, more subtle forms are much harder for me to interpret. Humour in this more subtle context might include a sentence that says ‘I’d rather drop dead than have to do this” or “I’d be better off dead anyway”.

Source: SlideShare

Dry humour

With one liners in this category, this is probably the humour I am known for. Puns and one liners are a play on words, using devices such as homophones and idioms (more on those later). Since one liners require a more analytical breakdown, they are easier for me to construct. And also probably the humour I might laugh at, and be vocal about. They’re often the ‘terrible’ jokes that people tend to exclaim upon delivery of one, usually if it’s from my father. The term dad joke doesn’t occur to me, probably because I am used to this kind of humour.

But dry humour doesn’t just mean puns and one liners. Plenty of Internet memes also fall into this category, which makes dry humour hard to get my head around still. In fact, I rarely share memes unless I know I can make one that will get a reaction, or someone shares one that is nuanced or based on an interest I have (autistic memes, PhD memes). And of course, following on from the sexual humour section, puns related to sex will definitely not occur to me and I may be the last to react in a group of friends as a result.

Observational comedy is also trickier for me to get my head round, and as a result I don’t tend to get much out of watching famous comedians whose humour is more about stories than one liners. When the laughter comes, it comes from them but it doesn’t come from me. And in a sense, I wonder if I’ll ever grasp it properly one day as well. On the other hand, comedy within music or dance does entertain me, most likely if it’s a song I know very well and thus can wrap my head round. Parodies of songs might be funny, while some might not make the slightest bit of sense. Again it is very individual and based on what I know and understand.

Sarcasm

The reality is that, as an autistic person, sarcasm is not part of my everyday speech and it is not something I will ever fully understand

This gets a whole section of its own. Sarcasm definitely goes over my head, mostly because online there is absolutely no auditory tone to a written sentence. None. I can’t interpret sarcasm at all. I often have to be told it is sarcastic, but this will only result in me feeling guilty that I didn’t know or was completely unaware. But there is something about sarcasm that just doesn’t compute with me. Not only is it used in a more subtle way (which alone makes it difficult to grasp), but it also seems to be used from people who might actually be the ‘pure innocent’ type that I am. Which suggests to me that my innocence is based purely upon my ignorance of sexual knowledge and humour. This actually makes me rather distraught. In a sense, it feels like I am ‘disabled’ from this type of socialising. Which would be another way of saying I wish I could join in.

But sarcasm in person also completely doesn’t sink in. The tones I grew up with as a child were absolutely different. The only tone I grew up with was the sarcastic tone expressed towards someone who might be (to them) stupid or dumb. So when asking a question I might have gotten a response such as: “No… really?” I would have also gotten creative responses such as: “Talk to the hand cos the face ain’t listening”, although this was more often the case if someone appeared to be annoyed at me. Tones I hear now completely differ from these. As a result, I am way too shy or anxious to even dare ask about them. Especially if I then get that same sarcastic tone I got as a kid for appearing ignorant. Therefore I never bother.

Explaining using algebraic theory

The reality is that, as an autistic person, sarcasm is not part of my everyday speech and it is not something I will ever fully understand. Detecting it is just as hard as being able to interpret it. It is ‘literally’ to me, non literal and completely escapes my mind.

Photo by JESHOOTS.com on Pexels.com

Okay, picture a spherical force field around an object for a second. Let’s say that inside this force field is a large round object. Let that round object be called x. Yeah I’m using algebraic terms, but stay with me. In this case, x is my brain, and the force field around x, (let’s call that y) is my ability to socialise. In other words y is the ability of x to expand in social environments. In algebra, we could say y = x(x+1)

In a normal situation, let’s say that a wave (we will call that z) is something I can easily grasp, such as the following phrase:

“The manifestation of the existential paradigm is infinitesimally larger than the exponentially evolved humanistic peon; indeed this precept is fundamentally beyond the cognisance of any finite mind.”

So x is the brain, y is the ability of the brain to expand, and z is the introductory subject. In algebra this might be expressed as y =x(x+1) when z = 0. This is because when z is 0, there is no subject being introduced and thus, y has to equal the expansion of x. An expansion of x cannot happen if there isn’t a term and a number within the brackets, therefore x+1 is a basic starting point

When we introduce the phrase as the subject that I can understand, z is now 1. This means we can now add 1 to each term. So we get 2y = 2x(x+2). Expanding this out gives 2y = 2x2+4. The result is a positive, and thus z is able to ‘penetrate’ that force field to reach x. So I can grasp it.

When we introduce a subject such as sarcasm that I cannot understand, z is now -1. We now have to subtract 1 from each term, giving 0y= x2 . As you can see the ability of the brain to expand to this subject is impossible because y is equal to 0 and has thus cancelled out. So it doesn’t matter how many times you square x, since if you had two or three lots of my exact brain structure and makeup, you get the same situation; i.e. y will always be equal to 0. Interpreting this visually, means that z is unable to penetrate force field y to reach x, so the sarcastic tone completely goes ‘over my head’. My brain expands but has no luck being able to grasp sarcasm.

In complete algebraic terms, we get the following rules:

when z = 0, then y = x(x+1)

when z =1 then 2y = 2x(x+2) = 2x2 + 4

when z = -1 then 0y = x2


I hope this makes it a little bit easier to grasp. I’m aware not everyone likes algebra but I am an analytical person, so it kinda doesn’t occur to me how to better explain it.

We can of course change the algebraic expressions to something different, but three variables must always be accounted for. My brain, the subject, and the expansion of my brain to address the subject. We cannot change z unless two or more subjects are introduced. Using 2 subjects the algebra becomes more complicated.

When z = 2, this suggests that 2 separate subjects have to be introduced to the brain. So let’s say sarcasm, followed by a form of satire. Adding or subtracting 2 to the expressions gives the following:

3y = 3x(x+3) = 3y = 3x2 + 9

0y = x2

Notice in the positive equation (z = 2) that 3y can now be factorised. This is because 3 is a factor of 9. Which actually gives 3y = (3x+3)(x-3)

This happens because the brain doesn’t know which subject to interpret first. The brain cannot expand the two subjects at once, so it needs to do the opposite, and separate the two subjects out. The first bracket equal to 3y is 3x+3 while the second is 3y = x+3

The negative equation (z = -2) however, gives the exact same result as with 1 subject. It is impossible for me to grasp the 2 subjects, so z cannot penetrate y to reach x.

What if it was one subject I did grasp, and 1 that I didn’t?

For every subject I grasp we add 1, and for every subject I don’t, we take away 1. So let’s take z = 2 again.

The positive equation starts the same as when 2 subjects are added, as in 3y = 3x(x + 3)

But now we need to remove a subject, leaving the equation 2y = 2x(x +2) because we needed to take the second subject away as it was impossible to grasp, so 2y = 2x2 + 4. This is the exact same outcome expected with 1 positive subject. We’ve removed 1 from all terms. This outcome will always be the same. Even if I grasp 2 out of 3 subjects, z will always equal 3 regardless if I can or cannot understand them. And if I could grasp 5 out of 8 subjects in another scenario, z is still equal to 8, despite the fact 3 subjects have not been understood, so the positive equation drops to 5y = 5x2 + 25, and is treated as if I can understand 5 subjects. This is because my brain cannot process each subject simultaneously. It needs to treat each subject separately. It is literally impossible for me to grasp sarcasm, dark humour and fatalistic humour at the exact same time.

Figurative language

The final section I want to talk about is one we all know about from English classes, particularly if you studied poetry in English language. Figurative language uses sentences to mean something else without stating it. It makes the job of interpretation incredibly difficult for an autistic person like myself. My guess is as good as yours, but it’s probably something to do with the wiring of my brain and certain parts of it exhibiting different responses. Figurative language may include metaphors, personification, similes, imagery, pathetic fallacies, and other devices you will find in poetry.

The sun smiling is apparently a form of pathetic fallacy. Photo by icon0.com on Pexels.com

However, this also includes other expressions such as idioms, proverbs and cliches. There are so many English idioms out there that I know I will probably never grasp all of them. Proverbs (particularly ancient ones) are also trickier for me to grasp. Usually they are the latest language I tend to be told about if I am confused about how someone is speaking to me. A lot of people for instance always say “kill two birds with one stone”. I won’t lie, when I was younger I asked someone why they wanted to use a stone to kill two birds, because I’ve had stones thrown at me and they are incredibly painful. Often my experiences tend to shape how I interpret things.

What can you do to support me?

I guess acknowledgement is by far the biggest thing I want from friends, especially because that will increase the level of trust I have for them. While I might feel I can’t join in on social chit chat all the time, I do feel like I’m not as mocked now as I used to be, and not bullied or anything. So I hope this can continue of course. Make sure you don’t make fun of my differences. When you tell someone about me as a person, maybe don’t mention abruptly how I struggle with these non literal languages. Let me express the struggles I have, and if you want to amplify that awareness for others, that’s brilliant. I would much rather you do that.

I really hope you literally got something out of this article. A lot of people have told me they enjoy reading these, so I hope to keep producing more and maybe just showing the world how my idiosyncrasies can be used to raise awareness of autism and hopefully one day lead to acceptance.

Let’s talk about stimming

Stimming is a word that might not be too familiar to some people. Lucky for you, the reader, this is a good opportunity for you to learn something about it. Or if you’re neurodiverse, this is just something for you to relate to, or resonate with. Before I was a bit more confident about talking autism, I would leave stimming in the background, because I felt that most might not understand, or not care to understand. However, as I grew up, I realised I wasn’t the only one who stims, and in fact, it’s common for most neurodiverse people (autism, ADHD) to stim. So this article aims to do two things. Firstly, get you up to scratch on what stimming actually is, and secondly, different types of stimming, for different sensory purposes.

What is stimming?

Rather than give you a straight up definition (because that’s boring and you might click off), I thought I would provide my own examples for you to take away something from.

Let me first present you with an image

Stimming infographic. Source: Just keep stimming

If you don’t grasp it, don’t worry, that’s why I want you to read on if you’re interested.

Let’s start with what might be the most noticeable form of stimming that people see me do. Bouncing my legs.

Leg bouncing

Essentially, I do this on public transport, or whenever I am sitting down. Often this happens because I’m excited, or I’m stressed, sad, and very rarely, angry about something. So it’s not something you might notice at first glance because I take a bit of time to become comfortable to whatever social environment I’m in. Be that outside in a park, indoors in a pub, cafe or restaurant, or especially in transportation of any kind. The legs may be seen bouncing up and down at speed, often alternating between the two, but sometimes simultaneously as well.

This is NOT to be confused with resting leg syndrome (RLS) or Willis Ekbom Disease, which is more of an uncontrollable urge to just move the legs, or to alleviate any pain/discomfort one may be feeling. In the case of RLS, the legs are bouncing because of uncomfortable sensations with no obvious cause. In the case of leg bouncing as a stim, however, the leg bouncing can bring me into more of a calm, tranquil state, particularly in the social environments I outlined above. Leg bouncing does not happen when standing up or laying down, but it happens when sat down on a chair or other surface. I place the soles of my feet on tiptoe, lifting my heal off the floor, and from there I can alternate back and forth at high speed for as long as necessary to feel calm.

It is important to remember that this is my personal experience and everyone’s neurodiversity will be slightly different. But I hope you’re beginning to see that stimming is just back and forth or repetitive movements that are a reaction to various sensory stimuli.

Arm rubbing

The next noticeable stim one might notice (that I do) is arm rubbing. This is literally what it says on the tin, and can be either slow or fast paced depending on my state of anxiety. Arm rubbing is akin to having a partner rub your arm up and down as a physically affectionate way of showing intimate love and care. However, due to my touch starvation, I often find that doing this to myself brings me relief from some social situations. Recently I also (finally) found some textured sensory bags (which are essentially just handheld bean bags) that I use to rub my arms with, and this saves my hand from getting tired, or overheating. The smoother the bag, the better I feel. I have 5 different bags that I will take with me wherever I go.

I view this as more of a personal stim because I haven’t met anyone else who does this. I have however met a lot of autistic people who bounce their legs. This stim happens because I personally feel starved of affection such as hugs, and it is a way to embrace myself as well as bring me calm when I am anxious.

Hand flapping

This one was more common for me to do as a child. I would essentially hug myself, squeezing my body tight while doing so, pull my fingers together (like a mitten) and then bounce my hands up and down on my shoulders or back. This would mainly happen if I was excited, buzzing or over the moon about something, and less so related to stress or sadness. I still do this, however it is extremely rare, and not very noticeable anymore. But I met a lot of autistic kids at an autism club who would definitely flap their hands.

Hand flapping is a common stim, and you may notice it in other people. The important thing to remember is that they’re not doing this to look weird. Judging them for this will just make it more likely they will stim, to avoid the social pressures that they may face as a result of people watching them. So please do not judge or make negative comments.

Stimming – categories

What I have told you so far, falls into just one category of stimming. There are actually a few more which are important to recognise. The category I have given examples for is tactile stimming or you can search tactile stimulation online as well. Tactile refers to touch stimuli. Nerve signals are activated in response to temperature, texture and other touch sensations. Some people on the spectrum are extremely hypersensitive to touch and will refuse hugs. Others like me, are hyposensitive to hugs (and therefore crave them) while being hypersensitive to certain touches depending on where on my body the nerves are activated. Another way of explaining hyposensitivity is that you will constantly seek out sensory stimulation as much as possible whereas hypersensitivity is when you are oversensitive to something and need to ‘defend’ yourself from it.

For my hypersensitivity, what I mean by this, is don’t touch me on the back of my neck, it is the absolute worst and feels like a pin prick, however slight you might do it. Every autistic person will have a different sensory profile. In other words, hyper and hypo are not measured on a binary scale. You can be hypersensitive to some stimuli, and hypo to others. For my hyposensitivity, please feel free to hug me from the front. I love the sensation it provides me.

Another type of stimming which I haven’t talked about yet is visual stimming. If I told you about the fact autistic people love sensory rooms, would that give you a hint as to what this type of stimming is for? Those disco lights, fibre optic lamps, bubble tubes and lava lamps can be some of the most relaxing, calming, soothing, often brilliant ways to de-stress, especially from large social environments. But visual stimming also varies from person to person. For instance, I don’t do very well with bright light, and would prefer a dark or dim lit area when I need to de-stress. And visual stims aren’t just provided by lights. The shine from gemstones might be enough to give you a nice sensory stimulation, especially if they are of different colours and shapes (which will affect the shine).

And again, the amount of visual stimming depends on how hyper or hypo you are to light. In the context of neurodiversity, a person who is very hyposensitive to visual stimuli will stare into lights, look from the corner of their eyes or even flap their hands in front of them. Whereas a person who is hypersensitive might avoid bright lights as much as possible in order to defend their eyes. Sensory rooms work for both, because on one hand they’re a great way to provide sensory stimulation to those who seek it, while on the other hand they’re an escape from very bright lights that might hurt one’s eyes, and therefore having dim lit sensory lighting that varies in brightness and frequency is more ideal.

Auditory stimming is related to sounds. Now let me tell you, I do this one all the time, every day. I use my fingernails to tap surfaces and my phone. I love clicking the tops of pens in and out and I used to do this in school (and get told off for fidgeting as a result). I love listening to ambient sounds as well. But auditory stimming also includes echolalia. This is essentially the repeating of phrases and words, often as a result of hearing them on TV, the radio or from other people. In this type of stimming, autistic people might talk to themselves at random. They might repeat something multiple times while doing so. They might feel like there is too much silence which could put them in distress, and therefore hearing the sound of their own voice may offer some relief.

But we can go further. Autistic people who have auditory stims might listen to the exact same song on repeat and never get bored. They might watch the same episode of their favourite programme and never get bored. I used to play the exact same song on my piano when I lived with my parents, and as a result, they grew sick and tired of hearing it, but I didn’t. I felt a great sense of peace while doing so. Auditory stims might also be used to block the sound of something you really don’t want to hear. I once got told off for turning my stereo up so high to mask the sound of an engine refusing to start, not realising I was doing this to avoid going into sensory overload. If there is no other suitable way to block a sound, some autistic people will shield their ears for as long as necessary. Now you get why I cover my ears to cars, buses and lorries? I hope.

And now a bit of a personal story. I used to sing before I could talk. Yes, that’s right. I would say a lot of baby gibberish but would do so in the form of a melody. Often when I was extremely happy, excited or content about something. And according to my family, I didn’t cry much, unless the Fresh Prince of Bel Air theme tune came on, which sent me into an enormous sensory overload. It might have been the fact the high pitched tambourine was too much of an auditory stimuli at the time. So I’d run out the room, as far away as possible. Or enough to drown out the sound. Today the most obvious auditory stim for me is my electric fan every single night. This is essentially to drown out the noises of cars (since I live next to a petrol station), but it also provides a soothing white noise that can be very beneficial when I am feeling stressed.

Staying with me? There’s a few more stimming categories to talk about. I don’t want to make you bored. But I hope you’re getting something out of reading this.

Let’s move on to oral stimming. This is stimming because of stimuli generated from taste. The most obvious example in which I did as a child, was chewing the tops of all of my t-shirts and the tops of pens and pencils. A very hyposensitive autistic person might also chew, and bite on their hands for stimulation. The chewing of t-shirts and clothing was common for me as a child, and I imagine I probably destroyed a few as a result. But in hindsight, I was doing it to seek the stimulation from it. But the pen chewing continued into my college days. I don’t do it as much now, but sometimes I do like the idea of chewing to provide some relief.

In contrast, a hypersensitive autistic person might find chewing on hard sweets or another food can provide a grounding effect to some anxiety. So for example, they may have felt a huge sensory input provided from spicy food and needed something to chew on to try and help the stronger taste. Hello this is me by the way, I hate spicy foods because I find them too overwhelming. Meanwhile, a hyposensitive autistic person might really crave spicy foods and foods with stronger tastes, and therefore this could form the main bulk of their diets as children or adults. In this instance, bland food is probably a bad choice. Using the hypersensitive or hyposensitive knowledge, the prospect of chewing gum in school might not have been such a bad idea after all. For the hypersensitive, it could provide relief from a bad tasting school meal, while for the hyposensitive, it could help them to feel more relaxed in class and might even stop some autistic people from choosing to get up and move in order to seek sensory stimuli.

There are chewing stim toys available from online shops which are great for autistic people who chew as a stim. Consider these as an option if, for example, you are fed up of your kid chewing their t-shirts.

We can now move on to talk about olfactory stimming. This type of stimming is the result of aromatic stimuli. Smelling certain things might be hard, while for others, they could be provide a nice relief. An example of olfactory stimming is constantly sniffing fresh laundry, which is something I still do a lot, often because I enjoy the sensation it gives me. Someone who is hyposensitive to olfactory stimuli may benefit from things such as incense, or essential oils such as lavender or eucalyptus. Think of an apothecary. The aromas these substances provide can be amazing for some on the spectrum, while overwhelming for others.

But we can go further here too. I am extremely hypersensitive to petrol and cannot stand the smell of it. Therefore, I often find that repetitively pinching my nose is a stim which helps me in public. But for another autistic person, that same smell might be amazing for them and so they might sniff it in more. I sniffed a lot in class, and it was noticed by other students who didn’t like it, and some even told me to stop doing it. Which I couldn’t, of course. So while it might feel rude to sniff, actually for someone who is hyposensitive, it could be the worst way to deal with it, because they need that olfactory stimuli to feel relaxed, especially if they’re anxious.

I don’t know of any good smelling stim toys, but if an autistic person has a lot of candles, essential oils, or incense on them, it’s probably because it helps them feel at ease.

Okay, let’s move (literally) on because the next stim is (literally) about moving. See what I did there? So vestibular stimming is stimming in the form of movement and balance. The most obvious stim I can think of here, is rocking back and forth, which I did a lot as a child. I also did this in school a lot, and again it was very noticeable. Remember the autistic person who is hypo will probably find that getting up from their chair in class and moving around will be beneficial, even if it annoys the teacher that would have told them to remain seated. Whereas the hyper autistic person will find that pacing up and down their living spaces might provide some sort of relief from stress. So you might randomly pace up and down repetitively in your flat. That’s a stim and it is valid. Although a hypo might do this if they crave it as well.

Children who do this type of stimming might love rocking chairs, swings and roundabouts. If they are hypo, the idea of motion will be incredibly beneficial and so you might consider giving them toys for this purpose, such as a slide (which, guess what? That’s exactly what I had as a kid) or maybe a skipping rope or a balancing board. It may also lead to having a bit of trouble getting them to sit still if, for instance you are driving, in which case, some other stim toy might work here. For a student in an exam, there has to be an adjustment for this purpose, especially if they are prone to getting up and moving around which is unacceptable in an exam. Probably a good way to get round this is to allow their stim toys in the exam, and make sure any other stimuli such as light or noise is adjusted accordingly. The important point to take away from this is that the stimming is never happening on purpose. Your awareness and understanding of this is perhaps one of the biggest ways to understand and support us.

And we’ve come to the final type of stimming! Notice how I’m structuring this to make sure you get the bigger messages towards the end of this article. I want this to have a direct impact on neurotypical people who have struggled to understand the reasons behind stimming and what they can do to provide support. So let’s finish up with proprioceptive stimming.

Weight and awareness of your own body in space is where this type of stimming is beneficial to autistic and neurodiverse people. A very hyposensitive autistic person who doesn’t have much sensory information on their weight might benefit from a weighted blanket, while for the hypersensitive, that weighted blanket is a grounding tool from too much sensory stimuli, and might even help them to sleep. I know that as an autistic guy, I have a very difficult time trying to sleep. Shutting my brain off at night is one of the hardest things I experience, and it has been this way since I was young. I would benefit from a blanket, but I don’t have one. Instead I weigh down my duvet with my red blanket on top, while making sure my electric fan is on to provide some cooling and avoid me from overheating, which will prevent me from sleeping.

An example of a proprioceptive stim, is to skip (with some impact) rather than walk. This is something I sometimes still do, just because I can be hyposensitive to my own weight and body awareness. In a way, having my dumbbells, and resistance training equipment is incredibly beneficial to my proprioceptive needs. But to the hypersensitive person, it might feel like they’re being crushed by the same weight/resistance, which would send them into sensory overload. . Another brilliant example of a proprioceptive stim is pressing hard on paper when writing. The pressure of heavily writing on a page might be a great way to provide some relief from anxiety. In which case, investing in something such as a grip strengthening device would provide amazing benefits as it would allow the autistic person to apply as much pressure as possible while also strengthening their grip, which is useful for manual handling and lifting of heavy objects.

In fact, hugging also comes into proprioceptive stimming too. Hugging tight is perhaps one of the best possible ways for me to seek proprioceptive stimuli, so it’s even better when a person hugs me tighter. The opposite is true for hypersensitive autistic people, as the thought of being tightly squeezed may be akin to feeling like they’re being crushed, making the thought of being hugged an absolute nightmare for them. Lighter stim toys, ones which don’t need to provide much pressure are perfect for this. Heavy clothing might not be the best way for a hypersensitive proprioceptive autistic person to feel comfortable, but it would be amazing for the hyposensitive.

The take home message

Remember, every type of stim is valid and there is no wrong or right way to stim either. Stimming needs to be better understood because it’s more common than most people think. After reading this article, I hope you understand why some types of stimming are beneficial to me, and why some are not. A sensory profile is never binary, which is what makes every autistic person different. And that’s a beautiful thing about neurodiversity, too.

CW: My Mental Health Journey

WARNING. What you’re about to read is incredibly sensitive, and contains information about suicide, and trauma. If you’re feeling in need of help, please don’t continue reading this. Resources are available for anyone struggling with their mental health. If you feel you are in an emergency situation, please dial 999. And remember, my story does not ever negate what you might be going through or have been through.

What do I suffer from?

I suffer from depression, anxiety and possibly PTSD (although the latter has not been confirmed by a doctor, but everything started going downhill after my trauma). Having a combination of different mental health issues makes everything a lot more complicated, and even harder for me (particularly as a man) to talk about it. I grew up in a society which would have seen the issues I suffer from today as lazy, ungrateful and selfish. I also was constantly told I needed to ‘man up’ and ‘snap out of it’, particularly from other men. You’d probably find me silently crying most nights because of this.

Loneliness

Growing up in school, I had no friends for 10 years. No one I felt I could call my own close friend anyway. I didn’t really excel at anything in school. I used to wear glasses so I just had a lot of bullying for being the one the teachers liked, or the nerd in the class. Back then though, I didn’t understand much of why I was being targeted so I kept on doing my own thing. That would include going to a remote area of the school field to look at woodlice, and examine them in minute details. I would spend all my lunch break doing this. If I wasn’t doing that, I was either drawing maps, looking at maps, or planes, or sitting in a sensory room with disco balls, fibre optic lamps and bubble tubes.

Groups would be difficult. If the teacher didn’t pick the groups for us, I’d always be the one who came last, and even then, people wouldn’t want me to be with them. This started happening more often as the activities at school changed from theoretical study to practical work. And this still affects me today, evident when people I care about are going on a night out, or a pub crawl and I cannot join them because I will get a sensory overload from being there. As a result, I prefer theory to practical work, and so I’ve spent the last 6 years of uni improving my academic writing skills, to the point where I now have my first journal article published on MDPI.

During school, homosexuality was also not widely accepted, and the term ‘gay’ would be heard on the playground constantly. Multiple times I was manipulated by people at school, including when I was made to kiss another boy on the lips in the middle of the school field with everybody watching. Peer pressure didn’t occur to me back then and so I thought it was acceptable to do. But also because I had been ‘bribed’ for a free laptop if I did so. And since I like proving to people what I can do, I just did it. Only to then be ridiculed for the next 15 years. This pretty much kickstarted all the bullying I received in school.

The boys didn’t enjoy playing football with me in PE class. The teachers also didn’t understand why I reacted so strongly against their snarky and often out of line actions towards me. I mean, I don’t think you’d want to have a ball drop kicked at your butt as a form of initiation. So I stopped playing football, because of this. Instead, I wanted something I could do where I felt welcome, and the sense of competition not as prominent. This led me to taking up gymnastics classes. So I found something I could do at school, but I still had no friends.

The bullying continued. You can probably name different kinds and I would tell you I was a victim of it. I was beaten up, kicked in the face in front of teachers (who did nothing about it). One time I was picked up and thrown over a brick wall (which hurt badly), another time I was fully knocked out unconscious and found myself in a wheelchair when I woke up. The hostility in terms of verbal abuse was also huge, including a lot of ableism towards my autism, and what would today be very bad homophobia. The worst bullying incident was that of one of my ex partners, who worked with 2 other people to produce a hate website directly attacking me and my autism. This website is actually still up and running. My parents began to monitor my computer time as a response to all of this.

While this was all going on, I began to be recognised for my performing arts. At high school, I was a favourite of both the drama and music teachers, because they enjoyed my acting, and my piano playing. Acting was something I liked doing because it meant I could escape from real life for a while. I starred in pantomimes, and comedy productions usually as the villain. To this day I still have my piano and I still play it, learning new music each year, but I should probably play it a bit more. So in the end, I found that music, and gymnastics were my coping mechanisms at school. Towards the end of high school, kids grew jealous of my acting skills and refused once again to have me in their groups during drama classes, leading me to struggle, and achieve only a satisfactory grade at the end. I’ve lost confidence in acting, and don’t think I’ll be that good in theatre productions anymore.

Today there are days where I still feel like I’ll be alone. I have far more friends who are women on my Facebook than I do men. This is because it was men who bullied me, so I find it a lot harder to trust men. It was women who’d be offering me support after the bullying, and throughout much of my school and college life. I stopped retaliating as I reached college, and afterwards, the hostility died down, the insults dropped, and the people that didn’t like me, took a liking to me very slowly. Sadly, this wouldn’t last.

Shielding my ears

For those of you who might not know, I have a huge sensitivity to vehicle engine starting sounds. To the point where if a large engine is off, I will shield my ears until it starts up. Unfortunately this very aspect of my life led me to permanently end an 8 year friendship with someone who took a liking to me during science classes.

We will refer to him as my ex friend, because that’s where it stands and will always stand. Thankfully he isn’t in my life anymore and I am fine with that. But the damage he did still lives with me today. It was a lovely afternoon, and we had just had lunch at Wimpy. We decided to take a walk along the coast of Beachy Head to burn a few calories and get some fresh air. The problems started as soon as we arrived. Basically, I saw a white coach from a distance in the coach parking area. Naturally I shielded my ears, thinking I was going to be alright.

But then, this ex friend of mine grew incredibly angry and hostile. He started to argue that there was no one in the coach, and it wasn’t going to start and told me to stop being silly. Shocked at this, I defended myself saying it is a natural reaction when I see a coach or a bus. He eventually flew into a huge rage, stormed back to his car, and drove off with his friend, leaving me alone by the edge of these cliffs. It was not a fun experience at all. I felt betrayed, I felt hurt again, I felt like jumping off that cliff. In the end, I accepted he’d gone and made plans to walk the 30 or so miles back home, or find the nearest train station. Days later, he shamed me for my political views, and for my cosplaying (a hobby I took up during college).

Once again I felt abandoned, lost and alone. And this is why I now feel like I must ask any friend I meet who has a car, if they’re okay with me shielding my ears. It sounds silly, but this is the reality. I have had this sensitivity to engines for a very long time. It’s not something that just goes away. Autism doesn’t work like that. My brain is very sensitive to certain noises. It just happens that my sensitivities are incredibly specific and unique compared to other people.

This is the mild part of my story. If you’re sure you want to read on, please be prepared to read about suicide and trauma. Once again, help is there if you need it.

The Trauma

Sadly, because of this significant event, and because of my huge ability to remember a lot of dates of my own history, there’s no way I will ever be able to forget what happened on this particular day. So writing it down doesn’t bother me. February 28th 2013. Just after my 18th birthday. I had been walking home from army cadets (which was something I took up to increase my self discipline). I was walking along the main road when I felt the hairs on the back of my neck twitch, and I could sense I was being watched. I quickened my pace, and naturally, wanting to get home as quick as I could, turned down a dim lit road for a shortcut.

Looking round, I saw two figures, and as they came forward still, they were wearing balaclavas, and looked middle aged. Realising I might be about to be mugged, I stopped dead and watched as one of the men stood behind me to avoid any chance of me making a dash for it, and one in front. I remember the exact words in what felt like the end of the world for me. “Got any fags?” The man in front said, to which I replied no because I don’t smoke and never will. Suddenly, the man behind me made a quick grab for his pocket (my reflexes are fast so I zipped around) and pulled out a knife. Two seconds later, that knife was an inch away from my throat. He was holding me at knife point. Then came the words:

“Give me your money.”

I couldn’t move. I couldn’t bring myself to speak now. There was a knife just inches from my throat. I was being mugged. I was being held hostage by two men who didn’t give a damn about the world they lived in, they just wanted money, and they would be willing to use deadly force to get what they wanted. They wanted something from me. And they were not getting it, because upon turning my pockets out, they found nothing of use. I saw them sigh at this point, and then they realised I was of no use to them. They asked a final question to me: “Do you live nearby,” and I nodded to this.

A minute later, the knife was pulled away from my throat, and back into the man’s pocket. Both of them turned around, the direction by which they came, and finally disappeared around a corner. I was in shock by this point. I was in denial, and I was wondering if I had just woken up from perhaps the worst nightmare ever had during sleep.

The ordeal was far from over.

What followed next was a huge fear of going outside for a few weeks. I got home, locked everything, even my own bedroom and sat there in silence, finally accepting that I’d just be alone and wouldn’t have anyone around to help me. My mind started to go all over the place. I stopped all my activities I would enjoy doing, I stopped talking to people, I stopped looking after my hygiene, I refused to eat and drink for a while, and didn’t join in any family outings or anything they wanted to do. I felt as if some huge black cloud had taken hold of my brain and completely flushed out all the positive stuff I had experienced. Flashbacks of my bullying became frequent, I couldn’t sleep at nights, I ended up crying myself to sleep about 90% of the time.

I deteriorated, fast. A few months into the summer break, I started to contemplate killing myself. I was not sad, I was not happy, I was not anything at that point. I was empty, null. I felt like it wasn’t worth it anymore. That I was just a waste of space. These thoughts began to plague me for days, and they continued for months. One night, I was in the biggest mess, and after my mum asked me if I was really alright, (months of masking and trying to stay out of my family’s sight for fear of being turned down support) I finally confessed that I was feeling suicidal.

I was looking for the least non lethal, harmful way to just end my life, I told her.

Diagnosis

The next day, I was rushed to a GP with an appointment. After I confessed everything I was feeling, the doctor told my mum I was suffering from major depression. I was put on medication, and referred to cognitive behavioural therapy (which would take 6 months to actually get contacted after). Mum explained that I wasn’t changing clothes, or doing anything I once enjoyed doing. The doctor told her that this is a symptom of a mental imbalance. When you lose all joy in life, you begin to question what the point of it is.

I didn’t want gifts, I didn’t want anything my mum was generously offering me, I knew deep down she just wanted me to be happy. I’m so used to not getting anything as a child that I don’t expect anything now, to this day. Sure, I used to demand for basic things like a go on the family computer, or a snack after school. But I never expected to do anything with family that I enjoyed doing, such as a meal out at an Italian restaurant, or a trip to the Spinnaker Tower. In December 2013, I had an appointment at a mental health hospital, where I was finally given more guidance and a bit more support. In June 2014, I started the CBT, for 6 weeks. I found that it helped rid me of the suicidal thoughts, but not my low self esteem or confidence.

As well as depression, the doctor also explained I was suffering from anxiety. I was constantly asking for reassurance, for hugs, for anything I knew might even help just one bit. I worried about burdening everyone, and as a result, grew more depressed and isolated from things. CBT helped change that a little bit but it didn’t stop me from feeling worthless. Most days today I still do feel worthless, and I do have flashbacks every year which is why I need the most reassurance on notorious dates that are just too easy to remember.

Relapse

Having been okay for a few months since CBT, I stopped taking medication and tried to revert back to my life, and seeked friends to talk to. A few months later, I felt the same feelings I had before CBT again. This would happen a few times throughout the next few years, right up to my new life here in Stirling. In fact, by the end of first year, the relapse had gotten bad. I finally got to a point that I realised that I needed to get help again and phoned the university for such. Put back on the medication, and given some counselling sessions (which would take 6 months to get an appointment) I was again fighting with my own mind about my life.

My mental health today

Today I live with depression, and anxiety. I live with depression because I tend to feel empty and worthless most nights. And I live with anxiety because I’m seeking reassurance and appreciation from others. I don’t want to be alone again. But I fear that I may be. Because I struggle with socialising in person even today. And I often contemplate on isolating myself from people on very bad days. I still have to ask people if I can hug them, if they mind writing me something, if they want a picture with me, if they want to meet up, or if I can shield my ears if I am in their cars. I have been battling for years. I am a fighter. I endured bullying, abuse and hate crimes. I endured a trauma. I live to tell the tale. And I’m not going to give up.

One thing that has really allowed me to accept my mental health is the film Frozen. This is one of the reasons it is my favourite film of all time, as most people who know me, will know. Anna was and still is my favourite Disney and favourite fictional character. What she went through as a child resonated with me so much. While I wasn’t physically shut behind a closed door, I was often left out of everything I wished I could do. It’s only now that I have the strength to talk about it, and I hope I can see friends and do things like walks, hikes, sciencey stuff, environmental stuff, save the planet, put people first, help in any way I can. Tangled is another film, I resonated with the fact that being shut in a solitary space for ages meant that your social experiences would be less. To this day I struggle with slang, sarcasm, innuendos, metaphors and any other non literal language, including internet memes, dark humour, and references to films I have never seen.

I am, in fact, afraid of the dark, particularly if I am on my own. Some nights it is hard, so I make sure I carry my headphones on me if I am walking or taking public transport. Some days I look at myself and I still see a broken person, with a black cloud over my head, not as big as before, but significant enough that it stops me from feeling happy. I have a few insecurities I fight with, such as my crooked nose, and the fact my eyes are not perfectly aligned, a prominent wrinkle between the eyes that is easily noticeable in photos, and that I have a rounder, more babyish like face. I have a decent looking body due to my fitness, but I hope one day I’ll accept my face for what it is, and also try to take in more compliments from people. This is coming from someone who was called ugly for years. But I am working on bettering myself. That’s why I also have a positive journal I carry with me when I see people now.

I am trained as a Scottish Mental Health First Aider. But that doesn’t stop me from feeling empty sometimes or afraid of isolation or loneliness. I work out a lot, but it doesn’t change my difficult nights and the fact I’ve always, (for all my life) struggled to get good sleep. I am sure that will have had some impact on my muscle gains but it is what it is. I still do trampolining and gymnastics, I still do piano playing. I study a PhD which is intense but enjoyable. I have a life which I am grateful for, but which also still has its daily struggles. I am here, and that is what matters. I will never stop persevering.

WORLD AUTISM AWARENESS WEEK – Autism, Mental Health and Social Pressures

MENTAL HEALTH AND SOCIAL PRESSURES

A topic which often doesn’t get discussed as it should. The mental health of students at University is important. The pressure of having to pay rent for accommodation, food/drink, bills, and still keep on top of all your studies, can be challenging at first. On top of that, everyone wants to have a social life at University, and do things they find fun and enticing. But on top of that comes peer pressure from others to join them, maybe for a drink. But then that drink might result in more peer pressure to come for a night out. You get anxious because you don’t want to let your friends down, but you also feel pressured by them to come out. Sound familiar to you? This is how social pressures can affect our mental health and wellbeing. These pressures may be felt more by autistic students than by other students.

So, why autism and mental health? They’re separate, right?

Autism is neurological. In other words, it is the way our brains work and view this world. Our brains are wired a bit differently to other brains. There are thoughts coming and going constantly. You are always thinking of one thing, then another. Sometimes just thinking too much can cause us to get stressed and anxious. Things like: “What do I have to do today?” Oh, I really don’t want to let you down, but I have to finish this work” or “I hope people actually like me just because I don’t really talk in person much”. The feeling of being viewed as different or feeling like you don’t belong has been and is a great contributor to higher suicide rates in autistic people. These feelings are an accessory to us being autistic. So absolutely, autism and mental health do exist together and we need to talk more about it.

I don’t know about you, but for me it is very common for me to be mad at myself if I make a mistake, or commit a wrongdoing. I have had people tell me that I am very hard on myself. I was brought up in a tough love household, and often shielded my feelings from others. Looking back, I wish I was more open about how I was feeling but at that time I was more focused on trying to get the last coloured toy car in the exact order I wanted it, or drawing my 347th road map from memory (yes these are things I did). I was able to occupy myself as a kid a lot more. I didn’t have the social and peer pressures that I began to experience as I grew into an adult.

What are some of the pressures you have experienced growing up?

It started at school really. There were always these truth or dare games played on the field, and there’d always be a bribe of money as an award. So someone would say: “If you do x, you will get x in this amount of money”. But after seeing just how ridiculous some of these dares were, I kept my distance. I wasn’t very popular in school. I did not like to take risks. But when I did crack, it was at the expense of myself rather than everyone else. Going into college and university, nothing changed much, except I became more aware of what other students enjoyed doing. And almost all the time, it was going out for a drink, a party, or a night out.

Now I’m in the second year of my PhD, and I don’t really have many close friends in my cohort. Most of my friends have come from doing other things at university, or from some of the views I hold. I lived with the pressure of getting drunk, and doing drugs in my undergraduate years because I associated with some of the wrong people, often outside of university. Now this isn’t the case. I experience the social pressures of being a student: people invite you out to parties, but you find socialising and social environments exhausting after a while. Or people invite you to drinks after work ends, but you just don’t enjoy it. On the other hand, being a PhD student, there is no telling you just how lonely you can feel some days, even though you do have people around you.

How does the university culture affect you when it comes to social events?

I’ve been a university student for 6 years now, going on 7. That’s four years of undergraduate study, 1 year of masters, and I’m in the middle of second year of my PhD here at Stirling. I found that integrating myself within the student community was easier than I thought, but I found clubs and societies difficult to engage with. In fact, because I commuted for the first 4 years I wasn’t a member of any club or society at my previous university. Here, because I have worked with the Union on issues I’m passionate about, I feel that has helped me to have a sense of belonging, and so I probably feel more welcome here than I did 6 years ago. All this doesn’t negate the fact that socialising is still difficult and exhausting, and that now I have those social pressures set by a drinking and nightlife culture here in Stirling.

Do you think you’ll keep the friends you make here?

The friends I have made so far are brilliant, and I love just how accepting they are. Getting to know people here, I do find that despite there being social pressures, there is no obligation to join in if you don’t want to. This is a very reassuring aspect of university life. I am used to watching films which talk about the fraternities that go on in America, and elsewhere. I am not about that life, personally but I don’t shame anyone who is, either. So I hope I keep all the friends I have made here, especially ones who have a mutual understanding of who I am. So even if I am hard at work on my papers, I can rest comfortable knowing I’ve got that support there if I need it.

What about loneliness? Can you talk about it?

I remember being lonely for ten years as a kid. But back then, I wasn’t really bothered much. I more just didn’t understand why people thought so ill of me at the time, and continued doing as I was always doing. Growing up though, I became independent from my family and started to fend for myself. I have had a few relationships, and some really long friendships which did not last before I came here to university. The feelings I get most nights is that I’m not able to join in with other students doing those nights out, or drinking socials. And the workload you get at PhD level is enormous. It doesn’t feel like it, because you might spot me walking through the Atrium most days on campus, but it is. That is to make sure I’m not doing too much at once.

But I’m also feeling like this because, well people would tell me “Sonny, as you grow up you’ll find someone. It could be at university, so just keep being yourself” So I’ve stuck by that as best as I can. Being me, means no clubbing, nights out or anything too socially exhausting. But yes to studying, writing, and doing things I enjoy. I think sometimes if we tell people something is going to happen in the future, you develop some sort of social expectation that it will happen. And if it doesn’t happen in a few years, then you start to question when it will. It leads to me feeling alone. I do wonder if other people have had similar thoughts.

Are you happy with your life at current?

This is a big question. It’s hard to say for sure without being brutally honest, as most people with autism are. My mental health is on and off, but I am working on it as best as I can. I will sometimes have the odd one or two drinks, but this is now probably once a month or two. I don’t let the pressures I experience control my university life, and I don’t cave in as easy as I used to. I am definitely happy with my study and how that is going. So to me that’s what matters the most. And I am grateful to the friends I have here and support I’ve received here.