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.

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.

Knowing My Limits.

Dear Diary,

I’ve come to the realisation that I’m not doing great at a subject I’ve been sudying for a year. I don’t want to quit it as I may aswell carry on to potentially recieve a pass but I’m not feeling great about it.

I keep thinking ‘I should have studied more’, ‘I should have done this – I was capable of doing this’ and ‘I’ve let myself down’. However in all these angry self-hating thoughts never have I allowed myself to think of the reasons why I’ve struggled.

The lockdowns, the not being able to do my routines, not being able to go to my appointments in person, feeling really unhappy and dealing with my OCD. All these factors and more have all added to my stress and inability to focus.

Despite knowing this, despite logically acknowledging that these things are true – I don’t believe it. I just feel bad. My brain hurts and I feel bad. I could be doing more but I’m going to go to bed.

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.

I Feel Defective

Dear Diary,

DISCLAIMER: This is going to be a very depressing post. I’m feeling very negative surrounding my autism and differences.

Today I feel bad. I feel guilty for saying this because it’s not very positive but it’s how I am currently feeling and so I’m going to share it. I feel like a mistake of a human being. I don’t work properly. I have OCD, low self-esteem and I have autism.

It’s not even autism that makes me so wrong. My problem is myself. There is no escape from being who I am and it is becoming very difficult to deal with. The autism just adds to it.

I feel like a broken toy in a factory conveyer belt. I was the one mistake in a perfect batch of toys and no matter how hard the factory workers try, I can’t be fixed.

My brain doesn’t work properly and I’m feeling more and more aware of this fact every single day. I just want to be normal and I just want to be able to not be autistic for a day to see if what I’m feeling is autistic or just an average emotion.

My brain just doesn’t work properly. Explaining how or why is impossible – a bit like describing a colour to someone who can’t see. All I know is that there is something wrong with my brain and I can’t fix it.

I want the autism to be erased; like how the toy repairman from Toy Story 2 wipes over the signature of Andy’s name with paint, leaving him perfect. I want to be free to not have to constantly fight or give in to my OCD and I want the chance to be an average person who has the average social skills and an average brain.

It feels never ending today. It feels like I’m trapped in my own stupid brain that does not understand how to be a human. My brain does not work and consequently I do not work and there is nothing I can do except struggle.

But what do you do with the broken parts of a toy? Perhaps you make something new out of it. Or perhaps you chuck them in the bin. Time will tell.

Thanks for reading. I’m sorry if this is depressing. Bear in mind that I do not think there is anything wrong with being autistic or having mental health problems – I’m just kind of the personification of “Don’t let me get me” By P!nk today.

Today I just feel so desperately unhappy and it’s hard.

To Miss Out On A Normal Childhood For Whatever Reason

Dear Diary,

On the 27th of March 2021 I will turn 18 years old – officially an adult and I have very mixed feelings about it. On one hand I’m excited to get birthday presents and cake. On the other, I feel a deep sadness.

The sadness doesn’t stem from the fact that this is my second birthday in lockdown and I can’t go out to celebrate-although that doesn’t help. My sadness is to do with the fact that I grieve the childhood I could have had, had I not had OCD.

I grieve every time I held my breath as a primary school student as I entered my bedroom due to the fear that I’d “contaminate” the room with my breath. I regret never using my iPod as a little girl because I was scared that I’d “ruin” it. I regret not playing with my toys because I thought that I was “contaminated” and would “destroy” my favourite thing. And I regret spending countless childhood birthdays crying, refusing to touch my presents and not enjoying being a kid.

A normal childhood would’ve been so easy for me if I didn’t have OCD; if a few neurological connections between synapses and nerves were different, I could’ve had a normal, happy childhood.

Whether you had mental health problems, family problems, suffered a trauma, were bullied or anything else that stopped you from enjoying your birthdays and your childhood; it can be hard to accept that you’re growing up.

I wanted to be “uncontaminated” and the way I thought other girls were like. I wanted to be able to touch my toys without showering and holding my breath before hand. And now I have managed to deal with my OCD enough to be able to touch my belongings but it was too late.

I’m nearly 18 and I no longer receive toys for birthdays and Christmas’s. I’m nearly 18 and whilst I lack the motivation to play with action figures or dolls – I grieve not being happy when I could have been and when I wanted to be.