The Fulfilment and Frustrations of Fixations

28th July 2020

Yesterday I spent all day hyper focused on one of my ‘special interests’. Now, I don’t like calling them ‘special interests’ because it sounds unbelivevably patronising and degrading. So I will call them obsessions, because for autistic people, they are more than just hobbies. So, yesterday I was obsessed with doing my art, and I got so hyper focused on doing some new experimental digital art pieces, so much so, that I managed to stay in one position for most of the day, just doing this art non-stop. Most neurotypicals will have hobbies, but autistic people tend to take their hobbies that one step further. It can be an esacpe from reality, a way to socialise, but sometimes it can become damaging. I often have to manage my obsessions. Before they become unhealthy, I have to force myself to stop, or another member of my family, or my boyfriend, will have to step in. If I become too hyper focused then I will carry out my obsession at the cost of everyday necessities, such as food and water. Yesterday, while I did manage to keep it balanced enough, I wouldn’t have eaten much had it not been for my mum placing food literally in front of me. I know today I need to take a step back otherwise the obsession could become unhealthy. The key signs of an obsession becoming unhealthy is if it is impacting on your mental health, interferring with your day to day life, it is causing distress, anxiety or depression, or you are unable to independently step back from the obsession. The most important thing is making sure that it doesn’t impact your mental health. Therefore, it is important to take breaks. Many parents and teachers have attempted to suppress some autistic peoples’ obsessions, but this is just as unhealthy as becoming too obsessed. The obsessions give autistic people a break from reality, allow them to be relaxed and happy, so suppressing this is also damaging.

These obsessions can be lifteime obsessions or they can be more fleeting. I have had obsessions in my childhood that I have grown out of, some that have stayed with me, and some that I have picked up. My main interests are art, literature, animals and crime/law. I often interchange my intrests. If I am taking a break from one, it is likely I will pick up one of the other interests. It is rare to see me doing absolutely nothing. Those main interests are ones that I would say have been lifelong. However, more recently I have picked up other obsessions, such as psychology and funnily enough, autism. Having an obsession with autism, I have recently found out, is fairly common for neurodivergents. I suppose for me, autism is something I can relate to (obviously), and it gives me a sense of understanding of myself. So it’s fair to say, this blog has probably become an obsession. Also, the art piece I was doing yesterday (now on my instagram @unmasking_autism) is a depiction of autistic masking, so I managed to combine two of my obsessions into one, and it was brilliant, I loved doing it. My interest in psychology also relates to understanding myself. I have spent some time doing lots of online courses. I am currently doing an online level 4 course in psychology, purely because I like doing reserach into psychology.

Having these obsessions has helped me, in some ways, throughout my life. I have always enjoyed researching, and when at school I would often research and watch documentaries (I love documentaries) about whichever topic we were studying. This did make me fairly nerdy, and people thought I was weird for enjoying learning. The social sides of uni and school have been unbearable, and I am quite poor with my attendance. But I love learning, and if it wasn’t for that, I probably would have dropped out a long time ago. Doing a degree in literature, which is one of my interests does also help a lot. I have also been viewed as intelligent all my life, due to my obsessions. This is probably because I am very good at hyper focusing and researching, so I love to soak up new information. But it has meant that my brain is overloading almost constantly, so when I get praised for being ‘intelligent’ I am sort of like, well its actually not fun, so thanks, but I wish I wasn’t because my brain hurts. It also does not help me with day to day activities which are the things I struggle with.

Anyway, I have rambled on because I’m good at that. The main point is, autistic peoples’ obsessions are more than just hobbies. They can become quite damaging when your brain can literally not switch off. I have often said my brain just needs a switch. BUT, despite the possibility of these obsessions being damaging, they should not be suppressed, only managed. Do not stop autistic people from having their obsessions, only help them to stop if you can see it is impacting their mental health.

Days Like This

26th July 2020

Today is one of those days where I’m in need of a bed, duvet and noise cancelling headphones. It has been a long weekend of socialising and after days like that I often need a day off to unwind, otherwise I could go into an autistic burnout or a meltdown.

It is a good skill, as an autistic person, to develop awareness of your triggers points. By finding patterns in your meltdowns and burnouts you can normally piece together what your tiggers are. For instance, today I knew I would be feeling exhausted so instead of forcing myself to mask and get up and do things, I have taken some time to rest in bed. I have to try hard to make myself not feel guilty about this, but I know I need this time to cool off. Now, this is a hard thing to recognise, and I’m very good at giving advice and then not listening to my own advice. I often get it wrong. Sometimes I don’t give myself a break and then wonder why I had a meltdomwn. But I suppose its about just learning the signs that you need a break. Many people have told me to keep a diary so it will help me recognise the patterns more, and while I do think it would help, I also don’t listen to others peoples’ advice. I have tried keeping a diary but for me, it can sometimes feel overwhelming writing it down. As I wrote that sentence I realised how backwards I sound, since I am in fact keeping a blog which is essentially a diary. (I often get told I contradict myself). But I think the difference between my blogging and a diary is that I feel as though I could help other people by sharing my experinces. As hard as it is, it makes me feel better knowing that I’m raising awareness.

Anyway, my rest day comes after a sociable weekend. I recognised beforehand that I would need a rest day after all the socialising, because I know it is something I find stressful. Why I find it stressful is a whole other topic that probably needs 10 pages of writing to explain. I also have started a higher dosage of mediaction and sleeping tablets, which I planned to start today. The reason I planned to take them today and not sooner is because there is a 6 week period in which starting new medication, or higher dosages can increase your anxiety. It also comes with a whole load of other side affects which I didn’t fancy facing at social gatherings. I know a lot of people reading this might disagree with medication, but when you’re someone who struggles with everyday life it helps to take the edge off. It doesn’t come close to solving my anxiety but it has helped me through rough times. I started medcation when I was at uni, because uni was something that stressed me out a lot. I don’t plan to be on it for the rest of my life, but it helps just as a walking stick. So that’s another reason for taking a break day.

I guess my overall message is, dont be afraid to take a break, whether thats needing a day or two in bed, or a few months on some mediatcion. It shouldnt be something to be ashamed of. I also wanted to get across the realities of living with autism, and in fact just the realities of life in general. I’m often scrolling through social media seeing all these amazing posts, and it does make you question your own self/life. But I wanted to get across that whatever people put on social media, despite how much fun they are having, they will all have days where they too don’t feel like getting out of bed. My recent post on my instagram page (link and photo below), shows two pictures of me. One of me at a social gathering with my boyfriend and the other of me in bed today with my noise cancelling headphones. Those two contrasting images show the realities of life. We all need a break sometimes, we don’t have to feel amazing everyday, and that’s okay.

This is the post from my page @unmasking_autism. (https://www.instagram.com/unmasking_autism/). I hope it demonstrates how social media doesn’t always show you the realities. It’s okay to take a break and take the mask off from time to time, whether you are autistic or not.

In response to my last blog I would also like to recommend some products which could help with sensory overloads and meltdowns. They are great for me on days like today where I just need to block everything out and relax. The first product I would recommend is a natural daylight lamp, or a soft light lamp. The day light lamps have been proven to improve mental health, especially for conditions such as SAD (Seasonal Affective Disorder).

https://www.amazon.co.uk/gp/product/B07Z949FFS/ref=as_li_tl?ie=UTF8&camp=1634&creative=6738&creativeASIN=B07Z949FFS&linkCode=as2&tag=keelymholland-21&linkId=b91490f048f58a1edfbab77d082deb95
https://www.amazon.co.uk/gp/product/B07NQLM5R3/ref=as_li_tl?ie=UTF8&camp=1634&creative=6738&creativeASIN=B07NQLM5R3&linkCode=as2&tag=keelymholland-21&linkId=9704ad63240aa862fa8f94a368de10e5

Another product I would reccomend is a weighted blanket. I haven’t actually tried one of these but I am planning to get one. They have been known to improve sleep disorders which autistic people suffer from, and are also sensory stimulating which means they can calm you down. Bedsure writes that their weighted blanket helps people with sleep disorders and autism by ‘simulating a deep pressure (DPT) to trigger the release of hormones that calm the nerves and lead to a deeper sleep. Heavy blankets called “grounding” help to earth your body and make you feel hugged or cuddled’. These work for both adults and children, so if you do suffer with sleeping whether you are autistic or not, these should help you get more comfortable at night.

https://www.amazon.co.uk/gp/product/B07XQCSSMK/ref=as_li_tl?ie=UTF8&camp=1634&creative=6738&creativeASIN=B07XQCSSMK&linkCode=as2&tag=keelymholland-21&linkId=09913daa325e0cc75bee8757d4f03cc9

My final recommendation would be noise cancelling bluetooth headphones. They are my go to item when I am feeling stressed. Recently there has been building work down my road which stresses me out, and the headphones really help. Whenever there is a loud noise my boyfriends grabs my headphones for me. I also play soft music with them when I am feeling stressed which also works as a good distraction method. You can of course also get the standard noise cancelling ear defenders if your are really sensitive to loud noises.

https://www.amazon.co.uk/gp/product/B082WD1QNL/ref=as_li_tl?ie=UTF8&camp=1634&creative=6738&creativeASIN=B082WD1QNL&linkCode=as2&tag=keelymholland-21&linkId=a32f7dbb9e6aac50b2068d0ad9bb7b9b
https://www.amazon.co.uk/gp/product/B01KBZDB4K/ref=as_li_tl?ie=UTF8&camp=1634&creative=6738&creativeASIN=B01KBZDB4K&linkCode=as2&tag=keelymholland-21&linkId=d2d0995dbf14c559750795cd3daf5cf4

I hope this information and recommendations have been helpful. Please do get in contact if you have any questions.

Sensory Overload

23rd July 2020

Yesterday I decided to face one of my triggers which is going into a busy shop. With the overheming envrionment of lockdown I have become too comfortable indoors and I am actually finding it harder coming out of lockdown than going into it. So, I decided I would brave the outdoors. I have always hated crowds and busy places. When I am in crowds I feel overwhelmed by the noise and the closeness of people. So going out into a busy place was a challenge for me, but its one I face quite often so I have become better at coping.

One of the reasons being autistic makes it harder to cope with busy places it because of our heightened sensitivity to sensory experineces. I have a few sensory triggers which include loud, constant noises and bright lights. This does mean my family have to put up with using lamps instead of the main lights in the house, as I prefer natural, soft lights. Another thing I always have to do is keep the utility door shut when the washing machine is on, as I can’t stand these noises. I can cope with these triggers when out in public (partly due to masking), but when I’m at home in my comfy place I prefer to reduce the triggers so that I can have my space to relax. By doing so I will be better equipped to deal with those sensory triggers when I do have to face them.

When I am out in public spaces, there is a lot of sensory triggers which overload my brain. When walking to the shops yesterday I was overwhelmed by how busy the roads were. Constant traffic noise has never been a sound I enjoy. I often walk fast to get the experience over and done with expecially since COVID as people seem to have become more annoying since the pandemic. After walking fast and feeling out of breath, I got to the shops and was again overwhelmed by the amount of people. It is a hard feeling to describe but its almost like I am walking in slow motion, but everyone around me is going super fast. When I first entered the shop I was alright because I had a task to focus on, but the longer I stayed there the more I felt the need to find quiet spaces in the shop to relax. I’d say I managed about half an hour at most in the shop which is an achievement for me.

By writing this post I hope to get across how intense the everyday environment can be for autistic people. These sensory issues will never disappear, you just learn to cope with them better. It would be a lot easier for me to stay at home, but even when I do stay home doing nothing, my brain is constantly overthinking, therefore I have to keep active to stop my brain overloading. It’s one of those situations where I’m damned if I do and I’m damned if I don’t. Despite all these challenges it’s important to face these situations in order to learn how to cope. BUT, it is also very important for autistic people to take that break when they need it, otherwise the everyday demands will lead to a burnout.

If you are autistic and you are reading this, you are doing well and you should be proud of yourself for conquering everyday life despite the battles you face everyday.

Undercover Autism

21st July 2020

One topic I really wanted to address was how masking affects my everyday life. The term masking pretty much explains itself. It’s a technique many autistic people (girls more so than boys) use in order to fit in. There have been studies which show how the female diagnosis rates are a lot lower than boys, and women are often diagnosed at a much later date in their lives than boys. When speaking to the National Autitistic Society, they explained how boys are often diagnsed in primary school years whilst girls are diagnosed later in life. They are more likely to show their autistic traits in their teenage years. When looking back over my experineces I remembered that my anxiety started when I was about 14, so it started to make sense. One of the main reasons why girls are diagnosed later than boys is to do with masking. Recent studies have shown that girls with autism tend to mask more, meaning they slip under the radar. In my experince masking is a constant activity that I do subconciously. One example of my masking is hiding my anxiety in social situations and not speaking up if I feel uncomfortable. I remember one evening when me and some friends were going out for the evening. We decided to go out for a meal but the restaurant we usually went to was closed. We decided on another place to eat, which in itself was uncomfortable, as changing plans last minute stresses me out. This is mostly because before I do something I like to visualise how the activity will go. If plans change then I haven’t prepared or had enough time to process and visualise myself doing something new. This was, and still is, a nightmare for my family. Anyway, we had chosen the restaurant we wanted and whilst lining up in the queue I was a bit anxious. I turned to my friend of 3 or so years and told him that I hate restaurants. He was fairly shocked and told me he thought I was fine with them, since we went to eat out quite often. This is all down to masking. I had managed to hide my anxiety about eating out from my freinds who I had known for around 3 years. So if I’m masking around my friends who I feel comfortable with, then imagine what it’s like when I meet strangers.

One thing that is common for autistic people to do when masking is copying social queues. Acting ‘normal’ in social situations is something that I have learnt how to do through observing other people and copying their actions and reactions. This is something I do less once I feel comfortable around people. When this happens I, funnily enough, go the opposite way. Around my friends I often have no filter and end up saying outraegous things, but they know me well enough to understand. But when I first meet people I tend to stay quiet in fear of saying the wrong thing or making a bad impression, which is also partly just my shy personality.

All this masking takes a lot of energy out of me and can lead to a meltdown. Quite often, if I have too much going on in one weekend, I will become quite stressed by the end of it, so I like to give myself cooling off periods after social gatherings. These periods have got shorter over time as I have learned to cope more and more. Opening up about these issues has also meant I have to mask less and less but it is still something I do constantly, especially if I am about to have a meltdown. I only ever have outwardly, manic meltdowns in my own home, away from people, for fear or judgement and embarrassment.

Masking is something that is entirely draining and makes everyday life tiring. It often leads to bouts of anxiety and depression. But opening up about these things, although it goes against every instinct I have, will make it easier in future to not have to feel the need to mask so much. Writing this blog is a hard thing for me and every cell in my brain is telling me not to, but the only way to spread awareness and understanding is to share these things. Hopefully all this content will make me a little easier to understand 🙂

A bit of background

20th July 2020

My journey with autism has been a complicated one, so I will try my best to round it up in a clear way. Unfortunately, my brain runs quicker than I would like, so it might become a bit messy. I’m 20 years old and I’m currently studying English Literature at Portsmouth uni. You would think that being 20 means I have a diagnosis and I understand my autism, but I don’t. For many people, particulalrly boys, they are diagnosed at a young age, having disaplyed the relevant traits already. I, however, am still waiting for a formal diagnosis, but after research, it is generally agreed in my family that I have some form of autism. But this is only a recent thing for me.

As a kid I generally always struggled with making friends and fitting in. I was extremely shy and preferred playing on my own. I’ve always had strong interests such as literature, art and animals. But I managed to cope until secondary school. When I first went to secondary school, although I found it overwhelming, I coped for a few years. It wasn’t until I was 14 when everything went downhill.

I can’t exactly pin-point the start of it but I remember being overwhelmed with anxiety all of a sudden. I started feeling sick all the time so I wasn’t eating a lot, I didn’t sleep much and I started feeling anxious about going to school and leaving the house. My grades began to drop at school and my attitude became very negative very quickly. I had a couple of friends in my class who I was very close with, however, there was a lot going on in their personal lives which also made things very complicated. The first teacher I opened up with was my science teacher. I told him about my self harming and he arranged a meeting with my parents. That day, for me, was emotional, it brought a sense of relief but also a sense of embarrassment, guilt and sadness. I was lucky that my parents were so kind and supportive. While my parents supported me, I also gained the support of my science teacher who allowed me access to his office whenever I needed a break. However, the school disagreed with this and instead sent me to the Special Support Facility which was basically where all the misbehaved kids went. I also went to see the school counsellor (not actually a qualified counsellor) who literally stared at me (this counselling technique I can assure you does not work for everyone. It sent me into meltdown as I hid under my blazer). My behaviour continued to worsen and I started to walk out of lessons or refuse to go to them. I can remember one particular morning where I was in my tutor room, upset and refusing to go to lesson. My tutor decided to go and get the deputy head who came into the room just as I was calling my mum, begging her to pick me up. I hung up on my mum as the deputy scolded me for calling her during school time. She said, and I quote, “your mum could rush down to the school and end up in a car crash because of that phone call”, which is obviously a great thing to say to someone with severe anxiety. So school continued and I didn’t go most of the time. My parents had arranged doctors appointments which really didn’t go much better. Eventually I got referred to CAHMS but i wasn’t willing to accept help and thought I was okay dealing with it by myself and with my family. I have since been referred to CAHMS again but the same thing happened. So that was my first experinece with anxiety.

After I left school I did a voluntary trip to Cambodia for 4 weeks which massively improved my confidence, and after this trip I made the move to Hazelwick Sixth Form which was considerably better than ICC. I recieved counselling, which was helpful but ended on a session in which the counsellor said “I don’t really know what’s wrong with you”. I had been tested for my hormones to see if that was impacting my mental health but it all came back clear. So ultimately we had run out of options.

It was only when I started attending uni that we thought about the possibility of autism. We accessed help at the uni, which (again) is not very suited to highly anxious people and went to the doctors who perscribed me medication for anxiety. We made another appointment to speak about autism with a doctor who told me it was unlikely I would be accepted for an assessement for autism (joke’s on her). I got accepted for assessment and filled out questionnaires which suggsted I had autism. We spoke with a woman from the National Autistic Society who told us about the recent surge in women being diagnosed a lot later than men. She advised that I showed signs of autism, and a few weeks later we got a letter with an estimated appointment time for my formal face-to-face assessment. It was about one and a half years waiting time which has now been increased to two and a half years. I was due my assessment in September 2020 but it has now been moved to 2021. So thats a basic outline of my journey so far. It has been confusing and complex but its slowly getting better. Not everything is resolved yet but now I am ready to raise awareness of these issues by sharing my personal experinces.