Parents and Autism

Dear Diary,

I was never great at communicating with my parents growing up. Call it autism, depression or the fact that I had OCD and my parents had no clue what I meant in my early years when I told them about ‘germs’ – or a culmination of all these things but I truly was rubbish at communicating my feelings.

After I grew up a bit, I understood a lot more about what I thought a family was about; and so I opened up a lot more about how I was feeling and then I also began to rely on my parent’s approval without even realising it. I am so reliant on my parent’s opinions and approval and they don’t understand it. My parents are by no means pushy or try to stifile or undermine mine or anyone else’s opinions but they are human beings with different opinions.

I feel alone in the world when I’m not relying emotionally on my parents because as soon as I realised properly in my autsitc brain that I had parents – I became subtly dependent on their approval. It’s not that I didn’t still yell at my parents, roll my eyes and storm out in a huff – because believe me I did (and still do). It’s more like I have the need to tell them every little thing that goes on in my life because I need to know that what I did was okay. My parents already do so much for me and I don’t think they actually realize how much I appreciate all that they do because I’m not good at communicating it all the time. They make sure that my room is clean, my clothes are ironed and I get driven to work and cooked hot meals without any complaint from them.

The trouble is that they don’t understand how I don’t understand that I need to keep my room clean and that I have to iron and wash clothes and arrange things. In my head I’m only a few years away from not living in my room full-time so the notion of keeping my room clean is pointless. Of course their argument that you could say that about anything is valid but I just don’t feel like it is correct.

One more thing about my parents that I find so frustrating as a young person with autism is the fact that they seldom remember I am autistic at all times. When I do something ‘autistic’ in public like speak much louder because I’m not good at regulating my volume in different places – they treat me like they would any other 18 year old who is being loud and seem to forget I’m autistic. When I talk about something too much they think I’m obsessed and don’t understand that sometimes I’m just trying to process something I like or really don’t.

Here lies my main problem and the reason I need to grow-up. Deep down no matter how much I know in my heart of hearts how much they love me and how much time, money, effort and sacrifice they put into getting me help and making sure that I am ready for adulthood, even with all of that and more; I am angry at them. And at the same time I just want to make them proud.

I am so angry and annoyed that they didn’t realise I had autism sooner. After I was diagnosed my mother said that “Finding out I had autism made everything make sense – it was the missing piece of the puzzle” not in an unkind way but it made me wonder how could you not know? Maybe not that I had autism but that there was something wrong with me when I was unable to touch my toys without washing my hands and brushing my teeth because I had OCD. I obviously didn’t know that I was different but surely they must have. I’m angry that whilst of course I joined CAHMS in primary 6 – my parents didn’t figure out that I was wrong. My mother told me that they thought I was just mature for my age which is why I preffered speaking to the grown-ups on play-dates.

Of course my parents are only human – two humans with three other kids, a morgage, a house and jobs to juggle; and if we are being honest I took up alot of those juggling balls – so it is truly unfair to blame them for not understanding a condition that mainstream media didn’t and still doesn’t understand. It’s also completely unfair to expect two humans to be able to 24/7 be able to deal with the autistic behaviour I do and not be in the slight bit frustrated how I wake them up because I want to talk to them.

It’s also truly unfair to blame them for things that they could not have known. Like my mother’s offhand remark of “Always stand up for yourself” a hallmark quote that she couldn’t have known I’d take literally. A quote that led to S1 me taking on S3/4s girls who were rough and ready because I stood up for myself for a stupid comment that would have saved me alot of friends, tears and pain had I just ignored. Me following her advice from nursery because I didn’t understand about how varied and complex most situations with conflict or drama can be. So why do I still feel angry about it? And why do I now get annoyed when my mother tells me very simple things that I obviously should and shouldn’t do in a situation which makes me feel like an idiot when I have a very recent history of taking the words of a cat poster to heart?

Why do I still feel angry at taking my middle aged Dad’s advice to write my phone number and e-mail down to give to all the girl’s in my new primary class in P6 on my first day only for them all to somehow have lost the bits of paper by the time I started my first term? Why am I annoyed that my Dad still has no clue about what a lot of my conditions actually are?

Why do I feel so upset that as a 18 year old woman I have just literally asked my Mum if it’s ‘okay’ to go to a nightclub with my colleagues. Not is it okay on a specific night because we have plans – but is it okay at all.

It’s not all bad though, my Mum disagreed with something I did recently – not in a nasty way but a simple “wouldn’t have done that myself” kind of way. I obviously don’t agree with her as I believe I did the right thing in the situation but her critisism did make me think about certain consequences of doing similar things again which is without a doubt a good thing. So I made some progress really today. I acknowleged my mother’s reasonable advice, respected myself for making the choice that I made and moved on. I think this mindset is the place I need to be at. I need to be Miss Independent but able to accept my parents opinions and advice without ignoring it or treating it as gospel truth.

I don’t think they’ll read this post as I’m obviously not going to directly message them about it but if they do read it they should know that I’m obviously not trying to upset them, nor trying to make them feel like bad parents, people or anything like that. They are fantastic people and parents – I am simply unable to verbally communicate some of this to them.

Take care of yourselves.

Medusa.

An Autistic Girls’ First Day at Alton Towers: The Good, The Bad and The Queasy

Dear Diary,

Today I went to Alton Towers with some of my siblings and father. We left very early in the morning – especially since I’d just done a night shift at work – to head off to Staffordshire to enjoy our two day and night trip with both days at Alton Towers and the nights at a Premier Inn nearby.

I was struggling a bit to sleep in the car. I couldn’t seem to get comfortable and was becoming a bit distressed. Much like a toddler having a temper tantrum in frustration about not being able to get the new toy she wanted, I too was about to throw something out of the frustration of not being able to get comfy. In these moments of frustration I become almost like a toddler; I lack perspective and advanced deductive reasoning and want to scream. Eventually I managed an hour nap in a position that could not be described as advisable for road safety but I was strapped in and following the law.

When we arrived at Alton Towers today I was so excited. I almost ran round my family in excitement wanting to express how happy I was and how much I loved them all. This is perhaps not the average behaviour of a neurological eighteen year old but I was happy.

I went on The Blade first and loved it. My head felt wobbly in a good way as I went high in the air and back down again. I definitely want to go on it again tomorrow!

The next ride we went on was less good. I went on with my sisters and at first it was fine but as we were carried higher in the air we also began going round and round and round and I could feel my stomach lurching. I’d had about three hours sleep, not really eaten anything this morning (as I’m fussy about what I eat) and I have middle ear difficulties as I’ve wrote about before on this blog.

The culmination of these different challenges were a disaster on the next ride I went on, which was Spin Whizzer. I know what your thinking reader – why the hell did I go on a ride called spin whizzer when I was still terribly nauseous from the last ride? – and the answer is that I’d never been sick due to a rollercoaster before today and that I also wanted to do what my younger sisters were doing.

After sheepishly wandering off the Spin Whizzer like a drunk Scotsman after a few too many pints; I run behind a bucket (the bins were not the right shape for sticking your head in) as it was the only non public place to go, and hurled my guts up.

I felt better after this and even more so after I’d had my hotdog at lunch (though I nearly hurled it up on the picnic bench after finishing it) after consuming it with what can only be described as the resilience and strength of a naval officer.

Next we went on The Wicker Man which I thoroughly enjoyed despite the very long wait in line. My and my youngest sister are desperate to get some merchandise from the ride tomorrow.

As a good ‘family ride’ we all went on the Congo River Rapids and I bought the picture of us all in the boat for a whopping £10 since my Dad is far too grippy (and perhaps far too wise) to spend that amount of money on a printed out photograph.

I went on The Oblivion which I loved and The Nemesis which I’m glad I’ve gone and bought the t-shirt but never wish to go back for leggings. After a substantial time away from Spin Whizzer I gave it another go with one of my sisters and this time I neither puked nor lived in fear of doing so – although I must admit a slight uneasiness in my stomach stopped me from going on it immediately after again with my sister.

After a quick snack of strawberries, marshmallows and melted chocolate, my family and I made our way to the Premier Inn hotel we are currently staying at. We visited Burger King for dinner (which I’m half-convinced is going to give me food poisoning symptoms in the next half hour) and Spar for snacks such as the Monster Munch I ate whilst writing this post. I of course am yet to get into my pyjamas as I hate having the smell of anything on my pyjamas and as we all know snacks tend to leave crumbs but I shall soon wash my face, brush my teeth and get changed – maybe after some Wine Gums and YouTube videos. I’m next to one of my sisters and currently our whole squad is on their devices with various snacks resting our legs and feet after an adventurous day at Alton Towers.

The castle and the bench area where you can watch the live performances.
Entrance Area of Alton Towers.

University Decision: Post-Making My Choice

Dear Diary,

I’ve chosen a course that in part surprised me. I know that I can excel at it and I am genuinely excited to get started!

Of course there are the wriggling doubts, the fears, the nagging voice in the back of my head whispering that I’ve made a huge mistake – which sucks but is also normal. I got into a fantastic course that may not have been my ‘dream course’ but is something that I love and can’t wait to begin.

So yes with the celebration comes slight mourning – mourning for a S1 girl’s dream and mourning for the countless other opportunities that every choice we make in life limits you to.

But despite some sadness and anxiety; I feel relieved. I have a clear view of what I’ve got to do and how I’m going to do it and that feels really good.

I am very happy and I think that this course will not only be badass, exciting and that guarantees a career; but will also make me happy in life.

Only time will tell but today is a good day and it requires a celebration – one preferably when I’m neither sunburnt or exhausted from adrenaline. One thing is for sure; I can’t wait to get started!

Take Care.

Medusa.

University Decision: Pre-Making the choice

Dear Diary,

The time is here – well a mere matter of hours away – for me to decide where I want to go to university and what course I want to take.

There are a few things for me to consider in the next short while. There are things to consider about both my capabilities my dreams and what the hell I want to do with the rest of my life.

I’m an insecure eighteen year old with autism and mental health problems; trapped in the mindspace of a primary one girl, who longs to be accepted and liked by the other kids in the playground. A girl who can’t understand why people don’t like her. I’m someone who lacks confiction in her decisions without letting on to the fact. I’m someone who still struggles to understand how she could possibly be autistic one day and on another day can’t touch her belongings because her OCD is too bad.

This is why I’m scared. I’m scared that I’m going to end up miserable in two ways:

Reason 1: I’m scared that by picking one choice I will be passing up on an opportunity I have always wanted and may never get again. I’m terrified that I am choosing based on fear of the unknown. That I’m using any excuse to not take a leap of faith and do something I’ve wanted to do since I was little. I’m afraid that I’ll end up filled with regret and anger at myself.

Reason 2: I’m scared that if I pick something and take a leap of faith it won’t work and I’ll be disheartened, sad and crushed. I’m scared that I’ll not be able to manage the course either by being not good enough at the course or by having a mental breakdown, or by both. I’m scared that I’ll miss an opportunity to discover what I want to do by rushing into an idea that could make or break me. I could take my time and see, try something and then if I can do it – move on to my dream course (if it remains that).

I’m so scared of regret, I have enough of it from my years of letting my OCD control my life and I don’t want to add to it. But whatever I do regret is always a risk.

I need to spend the next few hours thinking. Will post after I make my choice.

Medusa.

Miss Independent

Dear Diary,

It’s time to start being independent. It’s true, I’ve been over reliant on other people emotionally and in terms of looking after me.

During a phase of about 5 years I didn’t understand what having a family ‘meant’. It’s not that I didn’t have one, I’ve been lucky enough to always have a wonderful family but my brain failed to understand what that truly meant.

So after I realised ( with the help of TV funnily enough ) what it meant to be a family – I started over relying on it.

I’d spent so long not being able to emotionally interact with my family that when I finally learned, I went all in. I over rely on family members and people I admire to look after me. I try and do and belief things that exactly align with what they do and belief because I have a lack of self-identity.

It’s time to start taking care of myself. I’m an adult now and it’s time to take responsibility for the cleanliness of my room, my medication and other aspects of my life. It’s time to start being more independent.

Medusa.

Difficult Thoughts

Dear Diary,

Trigger Warning: If you are experiencing dark thoughts please don’t read further.

To give some context; I have an implant placed in my arm to stop my period, which worked up until a few months ago. I’m now going through my monthly cycle once more and all the hormones and emotions of this. (I will be seeing a medical professional soon to fix the implant or to go on the mini-pill.)

Note: I know my family reading this are going to be sad by all this – I personally don’t know why but I’m autistic and sometimes lack emotional understanding – but I don’t want to upset them. But I think it’s important to document the bad things and not just the good.

About a half hour ago; I got really upset. I was feeling insecure and then suddenly I wanted to cease to exist. I jumped to “I want to die” rather quickly in my tired brain and this was not pleasant.

And then the moment passed and I’m sort of okay again. These thoughts occur to me I’m moments of extreme anxiety or sadness. To clarify I never actually harm myself in ANY way before, during or after these thoughts occur.

The problem is that if I’m overtired; extremely stressed; upset or depressed – thoughts like I wish to be dead are inevitably more frequent.

I’m currently on my period and I’m very emotional and hormonal which added onto my exam anxiety and general depression – equals a very mentally vulnerable me.

But these semi-suicidal feelings are always at a moment of frustration and anxiety. And they never have a plan. I hate pain and I don’t really want to die – I just don’t want to live anymore.

It’s weird that I think like this but I’m concerned that I’m going to die of this in the future. It won’t be anytime soon, but maybe in about thirty years – I’m not going to have the energy to fight it anymore – not because I’m ‘old’ but because it’s a long time to deal with OCD and depression.

That being said I’m by no way encouraging other people to have this mindset. This blog post is about things I need to work through and deal with; not things for others to emulate.

If you are experiencing suicidal thoughts please contact The Samaritans : 116 123 free of charge from any landline or mobile.

Note: As I’m editing this I came across an article that basically summed up how I’ve been feeling in a much more clear way. If you have similar feelings to me please go look at this by Hattie Gladwell. https://www.healthline.com/health/depression/suicidal-but-afraid-to-die

To Make A Choice To Try

Dear Diary,

I had a choice today; a simple choice that could make a huge difference in my life.

I’ve been feeling like I don’t want to be here anymore for a few weeks now (not suicidal – just a wish to not exist). A feeling that if there was a magic button and I had a choice to remove myself from existence, I’d press it.

The world has felt bad and I’ve been feeling miserable. My OCD is bad, my self-esteem is bad and my anxiety is through the roof and whenever this happens a simple question goes through my mind “Things are always going to end up like this so what’s the bloody point?”.

I suppose it’s normal to be negative whilst being depressed but it still sucks. Knowing that I’m going to have to deal with my autism related OCD and anxiety for the rest of my life is horrible to think about and it hurts to think about.

Whilst being in this vortex of misery other aspects of your life gets sucked in too – aspects such as your schoolwork, your appearance and the tidiness of your room. As seemingly inconsequential as these three things seem, they all add up and lead to a very depressing situation.

So after all that; my choice came today. My exams are starting in the next week – exams I’m woefully underprepared for – and the thought of doing any studying felt impossible. It was physically and mentally straining to pull out my textbooks and open my laptop. I confess I nearly quit twice and I nearly threw my laptop in frustration.

But I chose to keep studying; and I ended up doing some good revision. Despite every part of me wanting to curl up in my bed and want to die – I chose to do something productive and it has made me feel better. Schoolwork feels that little bit less worrisome and I feel more in control of my life.

I’m still not feeling 100% – or even 50% but it’s a start and after today I want to keep trying.

Feeling Bad

Dear Diary,

Things feel for lack of a better word – weird. My OCD is not great and my depression is suffering right now. I don’t feel right and I don’t know why.

I feel like I’m drowning in uncertainty. I feel like I can’t breath and like any second I’m going to crumble into a billion pieces. My mind feels frazzled due to the OCD and anxiety and I don’t know how to make myself feel better.

I feel almost lost for words. The feeling I feel is that of constant anticipation for something bad to happen despite nothing suggesting that this is true. Maybe it’s the post-lockdown worry, maybe it’s that I’ve got school tomorrow or maybe it’s another thing entirely; the problem is that it sucks.

I’m refusing to make an effort in my appearance. I’m finding it hard to find the willpower to brush my hair and feel no motivation in making myself look nice which for a teenager is difficult to deal with.

Contamination is there but not the worst OCD-related thing that I’ve been struggling with. My main problem is avoidance – I’ve been avoiding touching my scrapbook, my jewellery and certain belongings.

I just want a magic wand to be waved curing me of all my problems. It’s really hard to give a damn about anything right now. When breathing feels like an anticipatory move for an unseen threat coming from my own mind – it’s difficult to do anything except play video games and hope that I’ll wake up the next day feeling better.

I fear my mind is going to break and that I’m going to be sent down a path of anxiety and depression that I’ll never get out of. This of course is nonsense – no emotion can last forever but it’s a fear nonetheless. I suppose that’s common for fears though, they tend to be semi-unrealistic.

It’s late now so I’m going to go and brush my teeth and get some rest. I have no clue how I feel about school tomorrow, but that’s the beauty of autism isn’t it?

Medusa.

Recovering From A Low

Dear Diary,

After my epic birthday I crashed. Not as far as I sometimes go, but far enough to cause disturbance in my life. My OCD and insecurities have been terrible so much to the extent that I wouldn’t reply to an e-mail giving my photo and getting included in the school yearbook…yeah, I’m not doing great.

I’ve not been scrapbooking due to OCD. I bought a bunch of stupid-ass clothes from a shopping site – all of which I’ve returned – because I wanted to be as pretty as the models and I thought that it would make me for lack of a better word “good“. I’ve been struggiling to adapt to the whole gradual school return. I’ve not been keeping track of my planner or doing any real schoolwork. I’m just kind of there.

It’s hard to get out of this kind of low feeling becuase whilst there is so much that I should be working towards or getting excited for – I can’t help but only see lockdown in the future. The pandemic if anything, has made me very short-term.

If I’m being honest I don’t know how to stop feeling so sad. I have no goddamn clue what I should do to get my mind and life back on track. The only thing that I know is that tomorrow is a new day and I’m going to make an attempt for some positive change: Waking up earlier, practicing driving with my Mum, doing some french revision, writing some more of my english dissertation and, finally buying some clothes that I actually like.

Fingers crossed tomorrow will be better. Take care.

Sensory Problems

Dear Diary,

I’ve been having what I think are sensory problems.

My back, face and neck particularly are a soruce of great distress for me at the moment. My back feels especially uncomfortable and it being at a place that I can’t see and touch without a back scratcher or a mirror is only adding to this.

It feels like my back as little scabs on it (it doesn’t) and I can’t “stop it”.

Of course some of this may be due to the fact that I get a lot of acne but even even if I don’t have it bad or it’s not painful – I feel really uncomfortable and distressed.

So over the last few days I’ve been really, really struggling with myself and my sadness but I’m doing better today and this is mainly due to some advice on of the pupil support teachers gave me. I was recommended to contact my autism support and I did, sending an email in my lunch hall and asking for advice/support.

I we since doing that I’ve felt a lot better, very tired after crying for twenty minutes, but better nonetheless.

I’m going to try and get on with my day and enjoy my birthday on Saturday.