When people look at me and say “you don’t look autistic”
Autism is going to see your partners family after months away from them. The excitement on the drive up knowing you’ve missed them as much as he had. But also the crippling realisation that I will be taken out of my comfort zone, socialising for long periods with no where to retreat.
Autism is working out your escape route before even reaching the destination. It’s the lack of social energy you have to make a coversation conflicting with your need and desire to fit in and not be rude.
There is a misconception that autistic people are ‘rude’ when really, we want to be liked we want to fit in. The majority of the time, we are choosing to leave our comfort zone and feel the heavy weight of anxiety and stress to make you feel comfortable. We mask to satisfy you.
Three hours in to our trip to see family and I’m craving an escape. I feel eyes watching me, my mouth is dry and my head is on stand by. Are they talking to me? How do I answer? Can I even string a sentence together?
I need to go, just for a short time. I need to recharge and read a book. But I can’t be rude.
I need to stay, that is what is expected. My foot is tapping, I’m biting my nails. Yes, I’ll have another glass of wine. Please say tonights going to be an early one. Its only been 12 minutes since i last left for a vape. They will start getting suspicious if I leave again won’t they?
The thing is, I love these people. I just need my own space.
“I’m just going for a quick shower” I lie. In all honesty it was the only thing i could say to give me some time. Some quiet. Will they notice that i don’t smell clean? Should i change my clothes to make it look realistic?
This is autism. It is not easy. I may not “look autistic” but that is because i have tried very hard to fit in, mask and make you feel comfortable. That does not mean i do.
My autism means that my brain is rarely stable for long. This is a major pain, especially being in lockdown.
I came up with this super clever idea to make a list of tasks and challenges to complete whilst I am confined to the four walls of my house. What a perfect idea right? (:
The problems I have with this are:
Too much pressure – Having a list of exciting tasks and challenges is great if I’m in the right mood. If I’m not, I will just look at the list and crumble.
If for some reason I am unable to complete the task, it may cause a meltdown.
My brain looks at lists I have set for each day and sometimes, the tasks I have set for that day I am not in the mood for. I then find it extremely difficult to chose a different task to do on a different day.
I feel like a failure- looking back at the tasks I set myself and realising I have done a whopping 10% can really put a downer on my mood.
I am still learning what works for me and what doesn’t. Especially at the moment with the situation we are in, it is proving difficult for me to adapt to a new routine and way of living.
If anyone has any thoughts or experiences the same thing, I’d love to know. Also, any advice is definitely welcome.
Yes. The big question. Is a professional diagnosis of Autism worth it? Is there any point?
I have seen this question asked countless times and there has always been a very mixed response.
I thought this week I’d talk a little bit about my views on the topic and where I stand.
To start, I think it is fair to point out that I received a professional diagnosis of ASD last year, but it wasn’t a smooth process. I don’t want to go off topic and talk about my diagnosis (maybe another day) but it took a good 7 years to finally get to where I am.
Living in the UK, I am lucky enough to have the NHS which meant a free Autism Assessment. To qualify for an assessment you are required to take several short tests provided by the GP to even get your name on the waiting list. I waited 7 months to then be told I would have to wait another 2 years. Yes, free health care is brilliant but it’s a constant waiting game.
Eventually I went private. But why did I so desperately want my diagnosis? Because I felt I needed it for my own sanity. Let me give you some context…
I had gone through my whole life being told I was “depressed” and “anxious” but I was still so different to everyone else. Going through life feeling misunderstood, frustrated and lonely was not easy. To be told it was likely I had autism and did fit in somewhere, it was the first moment in my life I felt ok in my own skin. I needed that diagnosis, for closure if anything.
Now, I get why a lot of people are happy with self diagnosing. I don’t think there is anything wrong with it, but before settling with your own decision there are several things you need to consider:
Are you likely to need support in life? This could be at work, college, University etc
Are you wanting to seek therapy for anything relating to Autism eg. Anxiety?
If you answered yes to any of the above questions, I would suggest considering a professional diagnosis. Here’s why:
It is very hard to receive the right support for any ASD related issues in the workplace or at school without an official diagnosis. Unfortunately, a lot of places require a written document confirming the diagnosis before they are able to help. Of course, advising your workplace or school that you suffer from anxiety will go down a lot easier. But if you are wanting specific help it will be a lot harder without that diagnosis.
Like seeking support in a workplace, finding a therapist that suits you could be difficult without an official diagnosis. Before I had my official diagnosis, I saw a therapist but was unable to discuss any ASD related issues as she was not qualified and I wasn’tofficially diagnosed. Following my diagnosis, I was advised to seek support from a therapist who specialised in ASD.
It is so important to do what is right for you. Don’t worry I get it. It is not easy getting that diagnosis and if you are happy getting on with your life regardless, what is the point in going through that stress.
There is no right or wrong answer to this question. We can only share our personal experiences. ASD is a broad spectrum and no two people are the same. Which is why asking an autistic person if you should get a professional diagnosis or not, is probably not going to answer the question for you.
Everyone is different and deals with their ASD in different ways. Some cope, some need support. Some people find ASD takes up only a small part of their life, other people find it takes up their whole life.
I hope the information I have provided will at least support you in whether a diagnosis suits you or not.
It’s very difficult to preach about staying positive when you feel far from it. I don’t want to come across as hypocritical. I think it is important to reach out for help and advice during a time like this, but I also think it is important to be totally transparent.
I have noticed a lot of articles, blog posts etc on staying positive during lock down and there is nothing wrong with that (I did one as well remember). But it has made me realise that a lack of transparency and honesty can make you feel alone. I have tried out numerous ways to keep me afloat during this current outbreak, but no matter what I do I still can’t budge the feeling of hopelessness. Seeing posts online from people offering advice is really positive, but it does also make you think ‘What am I doing wrong?’ And ‘Everyone seems to be getting it together, why can’t I?’
It is super important to spread positivity right now, but I think it is equally important to talk about your HONEST feelings. For example, my friend seemed to have it all together on Instagram. Posting daily updates, looking happy, having fun. It was great to see she was doing well but at the same time I couldn’t help thinking ‘how come I can’t feel positive like that?’ The truth is, she messaged me telling me she has been feeling awful. It might seem bizarre for me to say this, but it made me feel better. We are all human. And I guarantee my breakdown was also what she needed. Because, after that we were able to talk. Rant. Cry. Laugh.
Having an honest conversation is super important. You may not feel comfortable talking about your feelings to the friends who’ve got the lock down down (does that work?). But you need to talk about it.
In no way am I saying ‘it’s ok to give up because everyone else is feeling the same’
No. Because I really do believe we can all get out of this feeling positive. And I am trying, REALLY trying to look after my mental health.
It is never ok to give up – especially at a time like this. I wrote this blog post hoping to address the fact everyone needs support. Even if your friends seem to have it together, they might not. Reach out to friends, check in on colleagues, look after yourself and eachother. We are all going through this together and you may think you are all alone in feeling the way you do but you aren’t.
Hey, I cried at Cheaper by the Dozen last night because I wanted a hug from my mum so bad.
We aren’t supposed to be pros at this. We had little warning that this would happen, we couldn’t prepare. It is ok to feel awful in a time as awful as this. Please remember that.
In other words, I have pretty much felt every emotion at some point over the last few days. Being shut in the house without the option to go out is driving me crazy (as it probably is for the majority of the population) but I am powering through. Each day has been a learning curve, so I thought I’d share a few tips for you all.
To start, I thought I would sum up the last four days as briefly as possible.
Monday – Got sent home from work. Freaked out for an hour because THIS WAS NOT IN THE PLAN. Had to get over the loss of structure. How do you do that?? Create a new one of course. I made myself a weekly planner. This was the first thing I did to save myself from a meltdown as routine keeps me calm. I organised my new office space and made sure there was lots of sunlight.
Before I continue, I should probably say that when I am on the verge of a meltdown I can’t stop moving. Distraction keeps me occupied and out of the meltdown faze. Basically, I did A LOT on Monday.
I did gardening, reading, watched some television, took the dog for a walk and obviously worked.
Tuesday – Basically the same. I woke up early took the dog for a walk, went to pick up my prescription (jokes on me the queue was as long as the street) I gave up and came home. Read in the garden, watched TV, ate food, did a puzzle and listened to music. Oh and I worked.
Wednesday – Had a video chat with my work colleagues (my worst nightmare…it’s so unnatural and awkward!) I read in the garden, went for a run, read in the garden again (oh and finished my book) Worked? Sort of. Had a catch up with Mum, listened to music, did a puzzle and watched Hannah Montana.
And here I am now. The sun is still shining. I am about ready to scream in to a pillow, but I am functioning. So here are my tips:
Create a timetable – Stick to it as much as possible. Break down the hours of the day to ensure the tasks and times to complete them are as specific as possible. This will then stop you from feeling all over the place and will create a structured routine.
Create a workspace which is tidy and bright. Ensure there is a lot of natural daylight to keep your mood up.
Listen to music regularly – If you are in a job which does not require you to take regular phone calls, then stick on the radio, a podcast or your favourite playlist. This will help you feel less alone and happier.
Drink lots of water and eat fruit! The temptation to stuff my face with chocolate throughout the day is a constant battle, but I have made sure the house is stocked with lots of fruit to snack on.
Exercise! If you are living in the UK, you will know that Boris has said a form of exercise a day is necessary so make the most of this. Go for a run, walk the dog or a quick bike ride. I would also suggest to do this around lunch time. This is when the weather is best and it breaks up the day.
And finally, the tip that has saved my sanity…keep your mind busy. This has really helped my productivity and mental health by breaking up the tasks in the day. What I mean is, I would work for 30 mins – 1hr then read in the garden for 30 mins, then work for an hour then do a puzzle etc. Making sure you have regular breaks whilst at home will ensure you keep motivated and productive. Staring at a screen for 4 hours will only make you feel awful, especially when the weather is so nice. Everyone is in the same situation, everyone needs time to breathe. At work, you are able to walk around the office, talk to your colleagues, go for a 5 minute break outside. At home you need this more than ever. Not having that social aspect means leaving your desk for 10 minutes is even more important so don’t forget it.
I don’t want to sound like a broken record so I am not going to end this with some motivational quote. I am hoping that the tips I have provided will be enough! Hopefully you find at least one of them useful (and not too cliché).
I won’t be blogging daily as I have realised that I will run out of things to write about pretty quickly. I have decided Thursday seems a pretty good day to upload a post. Again, if there is anything you wish to see from me, please comment as I would love to hear your suggestions.
Like most autistic people, I have many special interests. Some come and go, whilst a few are never ending (my family get pretty tired of it). One positive thing we can definitely take away from social distancing is really taking the time to work on those interests and find new ones!
I am definitely trying to stay positive at the moment. Dealing with all sorts of emotions (frustration, fear, anxiety, stress, agitation to name a few) can be extremely draining, so it is important to try and occupy yourself as much as possible.
It is daunting to think that at any moment the UK could be on full lockdown and the little freedom we have left, will be taken from us. Ensuring you have plenty to keep your mind and body busy is important, so make sure you think about the things you enjoy and prepare some tasks for when the time comes.
For example, I love reading, gardening and knitting. I have started growing some vegetables and saved some tasks to do in the garden to keep me occupied when it comes to isolating. I have taken lots of books out of the library and stocked up on wool for some knitting designs! Fortunately for me, most of my hobbies are easy to do at home but there are definitely ways around those that may be difficult to do whilst social distancing.
Maybe you like exercising down the gym? There are so many apps and youtube videos out there for home exercises. Mix it up and do it in the garden? Or get your favourite gym partner on facetime and do it together.
You may be in to live music and all of your gigs in the coming months have been cancelled. Watch old tour videos, learn something interesting about a band. Or if you are feeling super adventurous, purchase a musical instrument and start learning! Maybe by the time this blows over, you could have your favourite song nailed on the guitar.
I know there are many hobbies which are near impossible to do whilst isolating, but I wanted to suggest a few ways to work around those which could be possible.
The idea of this post is to remind you to think positive, despite the inevitable changes and stress that lie ahead.
Create a list of tasks you have been dying to accomplish for so long
Play around with that craft you have been wanting to try for years
Exercise!!! Look after your mind and body always.
Find an online course to complete
Gardening – grow some vegetables or some sunflowers and have a competition with your friends over a group chat
These are just a few ideas to keep you occupied and relaxed during the times ahead. If this is something that you think may be useful, I will be happy to provide a more in depth post on hobbies to try? But I’ll leave that up to you.
Look after yourself, stay calm and remember everyone is with you in this.
I have heard this statement being thrown around a lot lately and wanted to discuss my own thoughts and views. Yes, at first I laughed when the country was still unaware of the severity of the situation but now I am frightened. Not only for the vulnerable people who’s immune systems are compromised, but also for those who suffer from poor mental health. There are many reasons why the above statement isn’t true. By no means am I talking on behalf of the whole Autistic community, so I would be interested to see how others feel about this.
Change and the unknown – I find this extremely stressful. Not knowing what is going to happen, how it will effect me and dealing with a new routine is by far the most difficult thing to deal with during this outbreak. Having no control over a situation can be hard.
Although autistic people find socialising quite stressful, being unable to converse with people is not healthy for anyone. Being left with your own thoughts for long periods of time can drive anyone mad and autistic people are no exception. Despite this, they may find it easier than extroverts who thrive on socialising.
As this is not something ANYONE has had to deal with before, I am sure throughout this process I will find more situations difficult and challenging. Over the next few months I am going to share my daily struggles and hopefully some helpful tips for anyone else feeling helpless during this awful time. The most important thing to remember is, autistic or not, you are not alone. We are all going through this together. And as well as looking after the vulnerable people in your community, you should not forget to look after your own physical and mental health.
I jumped in to things and didn’t introduce myself. So, welcome to my blog I guess? I hate doing introductions and find them slightly patronising, so I will make this as brief as possible. I am 21 years old and was diagnosed with ASD in September 2019. In the time leading up to my diagnosis and after, I made a conscious effort to learn all about this spectrum and how it effects me. One thing I have noticed since receiving my diagnosis is there are little resources available for people my age on the spectrum. A lot of blogs, websites etc are aimed at parents with young children with ASD and although there are lots of people out there who I can relate to, they are difficult to find.
I decided to create this blog to discuss my experiences with Autism. I wanted to use this platform as an outlet for me to talk about my feelings in a safe space, but if I can help anyone along the way that is definitely an added bonus.
Although this blog will primarily look at ASD and my experiences, I will also be discussing mental health. I aim to post on here daily and would appreciate any questions, thoughts or suggestions as this could help me build my blog.
See you soon.
The moment my mum and I finally heard the words “you are autistic” was a moment I will never forget. After living undiagnosed for 21 years and feeling like I didn’t fit in anywhere, I finally felt I did fit in somewhere. The weight that was dragging me down throughout school, college and work had finally been lifted. There are many people who believe a diagnosis is ‘pointless’ and I cannot disagree more with this statement. I didn’t feel it made little impact on my life. If anything, I felt I was finally able to start living. Don’t get me wrong, a diagnosis doesn’t fix you – because you cannot be fixed. But if you can learn to love yourself, you will eventually realise you wouldn’t want to be ‘fixed’ even if the option was there. You are you. I am me. And I am learning new things about myself each day, which is sometimes difficult but mostly beautiful.