sensory – Temperature

Hello again and welcome aboard the autism boat. In England it is currently December and the weather is drastically getting colder and colder. Many people make conversation with me about the awful weather and I play along but the truth is I love this kind of weather. This is because the way my body perceives temperature is slightly different from a non-autistic. For me, summer is the worst time because of how hot it is. I am hypersensitive to heat and so summer becomes a hell for me. On the other hand, I am under sensitive to the cold hence my love of the weather at the moment.

I love a good snowy day!

Looking back I have always been this way, as a child I have memories of swimming in the sea on cloudy days and being forced to but a jumper on when I went outside. This doesn’t sound too bad but summer is when the trouble starts. When it gets hot I begin to function less and less as I get overwhelmed with negative sensory input of the heat. I tend to be in a worse mood in the summer and don’t want to go outside at all. My skin feels like its going to melt off and so I avoid places that are hot like for instance hotter countries. This is hard when it come to holidays. I would love to go to Iceland but my parents would rather get a villa somewhere hot. The ways I have found to make summer more tolerable is always having access to a fan, this has helped considerably. Temperature effects me a lot and it something I have to really think about to make sure I can still function. Well that’s it for today, see ya.

Sensory – Light

Hello again, and welcome aboard the autism boat. Today I want to talk about the sensory issues I have with light. This one isn’t so much of a problem as sound but it is still important to talk about.

For me (and most autistic I have met), artificial lights are terrible, especially fluorescent and LED. These lights are just so bright and I can still sort of see how bright these lights are when I close my eyes. I have to use my hands to cover my eyes but this isn’t socially expected and then I can’t see at all. Being under these lights drains my energy fairly quickly and this often leads to exhaustion with prolonged exposure. But prolonged exposure often happens as in most offices and certainly in schools most of the lights are fluorescent. Every day I go school and leave exhausted (for multiple reasons but this contributes), it is just so intense all of the time. This problem is made worse if the room is painted white or has white tiles as the lights reflects and is made 10 times worse. When I go to sleep I must have it very close to pitch black because I can still see small lights when my eyes are closed and it keeps me awake.

So what light do I like? I love natural light, sitting by a big window will make me more productive and will often not decrease my exhaustion levels. If I am feeling particularly overwhelmed I can shut my curtains to have a low light level but it’s still natural. I could also wear sunglasses inside but I like to be able to see well as I have to look very closely at peoples body language and facial expressions when I talk to them. Also stimming can help me become less exhausted or overwhelmed but this just slows this process down, it doesn’t stop it.

The thing you should take away from this is that autistics need natural light to function better, and it’s such as easy adjustment. By just moving an autistic kid in class to a desk by the window might increase their focus. For me I need to open my curtains more and have my light off until it gets dark. See ya!

Sensory – Sound

Hello again, and welcome aboard the autism boat. Today, and in the following posts I am going to talk about my sensory issues as these make up a big part of my autism and struggles. First I have chosen the biggest one, sound.

Before I was diagnosed, before I really understood my autism I didn’t think I had any sensory issues. Boy was I wrong. I have discovered that I have hypersensitive hearing. This basically means I have a super power, super hearing. This comes with it’s ups and downs so let’s jump straight into the issues, shall we.

Some Boats docked at Lake Geneva.

The biggest issue I have is becoming overwhelmed by all of the sound. For me it’s not the volume of the sound but rather how many different layers at once there are. For instance, if the TV is on and the radio is on, I have to run and put headphones on as quickly as possible to avoid having a melt-down. This is the same in a busy environment like a school, lots of pages turning, people tapping pens and lot’s of conversations all happening at the same time e.c.t. lead to all my days at school being exhausting, and this is before any real school work is done. I can also hear sounds others can’t, so when I start getting stressed and on the brink of a melt-down they are thinking why. It’s hard enough to explain how much sounds effect me but it’s even harder when they can’t hear those sounds.

Getting to sleep is also an issue, especially when you can hear every thing in your house. If my dad is sat in this room and all the doors are shut I can still hear the sound of his keyboard on this smart phone. This has lead to lot’s of sleepless nights.

So sound impacts my life greatly, even more then words could ever express so how do I get anything done? Well I have a few coping strategies to help me. The main one is putting headphones on and listening to loud music – this is one audio input and so much easier to process. I do this at home and at school when I’m studying. The other coping strategy is stimming (I covered what this is in a previous blog post). This combats negative stimulus with a positive one. This isn’t a long term solution but it can keep me focused enough to be in lessons or to enjoy a trip out.

So there you have it, the first of my sensory posts! Never underestimate the impact of sensory issues and autistics. Until next time, see ya!

Dealing with Birthdays

Hello again and welcome aboard the autism boat. I will say this now, I love my birthday but that doesn’t mean its a stress free time. I have decided to talk about this now as my 18th birthday is next week! I am so exited but also surprising quite scared. I wasn’t sure why at first but I think the general fears lots face at birthdays are amplified in autistics. I wanted to write about this to show that even in happy times autism is still there and needs to be taken seriously.

My 17th birthday cake. My dad made it!!!

So let me just dive into it. Every birthday I have a family gathering which is really nice but it comes with challenges. The first is all the people. There are lots of conversations going on at once and this is very draining. Normally I would dip out when I needed to then come back but birthdays are different, they are all there to see me so I can’t just leave and I feel very trapped even though I love my family. The other thing is presents. I get very nervous opening them as I want the giver to know how much I appreciate them but I’m not always the best at showing it and if I don’t really like what they got me it’s even harder. But luckily this rarely happens as in recent years I have made a powerpoint of present ideas and my family know to stick to them!

These next ones are based on me turning 18! I don’t do alcohol. I don’t like drinking it or being around those who do. This has already made my 18th problematic as many people have offered to take me out drinking and I just don’t want to but drinking is so ingrained into our society that I have found it’s frowned upon to not drink (which makes no sense to me but hay ho). The other one is just the fear of growing up. I’m about to be an adult and this is terrifying. I’m worried that I’m gonna have to push my quirkiness down even more because I’m an adult and I have to be sensible. It’s also making the future seem more real, going to university (hopefully!) and getting a job. It’s all so scary and turning 18 is the first step to the rest of my life.

Another aspect is being overwhelmed with emotions. I get so exited and happy on my birthday that these very strong emotions overwhelm me and I tend to crash the moment something negative happens or the next day. This worries me but hopefully as I am more aware of this now it won’t be so bad. I also tend to get quite guilty, which you might think is odd but let me explain. When people buy me lots of nice gifts I feel really bad that they have spent money on me, why do I deserve to take away their money. Don’t get me wrong I love receiving gifts just like most do but sometimes it can come with guilt that is hard to tackle as there is only so many times you can say thank you.

Thank you for sticking with me in this rather odd post, see you next time!

Camouflaging

Hello again, and welcome back aboard the autism boat. Today I wanted to talk about camouflaging. Camouflaging is sort of like having a normal mask. An autistic puts this mask on to avoid being spotted as different and to try to conform. This means that to others, the person seems like a typicality everyday functioning person. This is the intent of camouflaging. In my experience this is mostly done by female autistics and in my opinion is why so many autistic women don’t get diagnosed or are mis-diagnosed as they seen “fine”. In short, autistic female are usually better at hiding their autism which is why some to this day believe that females can’t be autistic or there are fewer of us compared to the males.

This is why I was diagnosed later (at 15). I had learnt to camouflage very well. People just thought I was a bit quirky, which was believable as so are most of my family, but it was more. To this day I still camouflage for most of the time especially in public and at school. This drains my energy very quickly which is why when I get home I crash Recently I have been trying to camouflage less as I believe people will like me for my quirkier self but this is going to take time.

The other aspect of camouflaging is that sometimes it can feel like living two different lives and its hard to keep up, this is another reason I wish to camouflage less is because I want to be more relaxed and not have to worry who I am in public compared to in a comfortable environment such as at home. However unfortunately, camouflaging is necessary to live and be accepted into society, in the work place and make friends.

What camouflaging feels like to me, the autistic is on the right

Camouflaging is a big aspect of my life and everyone does it sometimes, just autistics more. It is one of the biggest tools in my autistic tool box and I am glad I am able to do it as it has helped me live a life in society even with its downsides. It has allowed me to “act normal enough” and to make friends. I am really happy as they are starting to see my quirky side and they are still deciding to be friends with me so that’s a plus. Going back to the diagnosing autistic females, if you think you know or are an autistic female that is good at camouflaging, this may stop you from getting a diagnosis so keep pushing until you find someone that has experience diagnosing autistic females.

So I have run out of things to say at this moment, so I suppose I will end this post here. See you later.

My Diagnosis Journey

Hello again, my diagnosis journey started when I was around 13. My Mum and I went to my GP about my depression and anxiety. The GP then referred me to PCAMHS (primary child and adolescent mental heath service) where I got some counseling sessions and was diagnosed with high anxiety. From there I went to CAMHS (child adolescent mental heath service) where I had more counseling but it wasn’t working for me and I began to spiral. I was very lucky in that the waiting list for Oxfordshire assessments was so long that they sent some people to a private clinic, cutting the waiting time. After about a 18 month wait it was time for my autism assessment. It was February half-term in 2017 and I remember it so clearly. I spent a day a lady and we did different exercises and just chatted. Then it was time for the result. When they told me I was autistic I was shocked because I thought they were going to say I wasn’t. This shock and denial lasted about a year. It was a very hard thing to process. They told me I was autistic and then was left to fend for myself. My parents were offered sessions and my Mum and Dad went to one each. But I, the autistic one was left with nothing until CAMHS stepped in and offered me CBT (cognitive behavior therapy, which I will make a separate blog post about).

While this was all going on, we started The Curious Dog in the Night-time in my English class. For you that don’t know, this book is about a boy named Christopher who is trying to solve a mystery, but who also happens to be autistic. Now this posed a problem. We started this book just after my autism diagnosis and if anyone even mentioned autism I would burst into tears. Needless to say every single English lesson was torture and normally lead to sobbing afterwards as I had to sit and endure what everyone had to say about autism, non of them knowing I was autistic. Luckily there was a silver lining. I told my English teacher about being autistic and she was super nice and made it so I didn’t have to contribute if i didn’t want to.

The reason this was hard was because I knew nothing about autism which meant I suddenly didn’t know myself. I felt empty. This lasted about a year until I decided enough was enough and I started to research about autism myself as I had no one to help me. This better understanding and reading what other autistics had wrote let me accept my autism and move on. I now wish to help other and I believe nothing is better then reading what autistics think and their experiences.

For any one thinking about having a diagnosis I say go for it. Don’t think of it as a negative thing and see it as a way of understanding your self better. Having a diagnosis has really helped me and has made me feel more empowered. Well that’s all from me, see you later.

Stimming

Hello again, and welcome aboard the autism boat. Today I want to talk about a big aspect of my autism, stimming. Stimming is self-stimulatory behavior and I have been doing it my whole life in some way or another. Stimming is different for every autistic but it usually involves movement or sound. So lets dig deeper into how I stim, why I stim and why stimming is so important in an autistics life.

In my early life, looking back I stimmed a lot (my diagnosis wasn’t until I was 15). I used to ‘danced like Elvis’ when walking around, people just thought I was quirky but now I realize this was me stimming. I can only imagine what an odd sight this must have been and why I wasn’t assessed earlier.

As I’ve gotten older I have learnt to try and make my stimming smaller as so to fit into society better. This is awful but a reality lots of autistics are living in. This is called camouflaging but I will do a post about this later on. The main bit of stimming I do is rapidly moving my hands. I do this when I’m stressed, excited (happy hands!) or when I’m day dreaming. I may also lock my jaw when I’m day dreaming but I’ve only been told that. This is the most discrete I can get, as I don’t want to draw attention to my self. The other main one happens when I’m getting really distressed. I make low, grunting like sounds as I find it really hard to talk. This usually means I’m on the edge of a break down and need to go and rest. But with the polar opposite, when I’m really happy I make high pitch sounds. These sounds are also often accompanied by some movement. I might shake my body when distressed and not be able to sit still when I’m exited.

Now lets move on to why I think I stim. For me stimming is a way of combating negative stimulation with positive stimulation, so if there is a really high pitched noise I might start shaking my hand to combat this, consciously or unconsciously. I also think it’s to release energy when my brain is working too hard, which to be honest is most of the time as I have a very vivid imagination and my brain tends to wander a lot.

All of the above things are very positive, stimming is there to help you out so you can be healthier or concentrate for longer. So why is it that on the whole, especially non-autistics, see it as such a negative thing? Yes it can make us look a bit odd or sometimes threatening but it is a very good thing. I feel ashamed when I need to stim in public so it has lead to me having meltdowns in the middle of a busy street or my worst experience in Covent garden (a busy area of London), all because people would look and stare over something that we autistics can’t always control. This is why I want to raise awareness. I want autistic to be able to stim freely (as long as there not hurting themselves or others), as they would be much healthier as a result and I encourage reading this to tell your autistics in your live that its ok to stim and that you don’t mind as it will make them feel better.

I hope you found this insight into my life interesting, see you later!

Hello World

Hi everyone, i’m Ali, your autistic guide and you maybe asking yourself why do I need an autistic guide? well my world is full of struggles and strengths that I wish to share because you probably are or know someone on the autism spectrum that could benefit from you gaining knowledge about autism.

I am a autistic advocate (obviously), my goal is to help as many people live happier lives, especially autistic people and their friends, family and colleges (autistic or not). This blog is for everyone so don’t go if your non-autistic as I welcome diversity and want to create a blog where we can raise awareness for autism (and some other mental disabilities and mental heath issues may pop up once in a while too). I am also dyslexic (so blog posts won’t have perfect spelling and grammar) and wish to become involved in the LGBTQIA+ community as I am gay (I identify as female incase you were wondering).

So stick around as I am hoping to be posting weekly, see you later.