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.

Depressed, Angry And Then…Came A Moth

Dear Diary,

My OCD is shocking today. I’ve broken my own rules by showering two days in a row for the sole purpose of pleasing my OCD. I don’t even care though; that seems completely irrelevent to me right now.

I can’t find myself caring enough to do anything right now. My parents are annoying me ( a sign I’ve not had enough sleep ) and I’m feeling frustrated by the fact that it seems life is going to take a lot longer to get back to normal due to COVID-19.

My printer is not working – which was the only thing keeping me calm and busy. Printing off photos and stickers for my sketch book was a happy distraction and coping mechanism but thanks to shoddy WiFi it won’t bloody work.

I just don’t care anymore again. I’m finding that challenging my OCD is not working when there feels like there is nothing to challenge it for.

And then like a sign from the heavens, a pesky moth flew into my bedroom. Scared of having a moth fly into my mouth whilst asleep or secretly die somewhere only to give me a heart attack when found three months later, I enlisted help to get it out of my bedroom. At first I called my Dad but he made it clear there was nothing he could do. Determined to rid myself of the moth I enlisted my nine-year-old brother’s help – though I had to make it clear stomping on it was not an option.

We managed to lure the creature into my en suite bathroom. I managed to catch it in a plastic sheet of paper and throw it out the window – only for the little shit to imediately fly back in again. Eventually my twelve year old sister joined the crusade and managed to single handedly remove the moth from my bathroom. Afterwards we all laughed and now my little brother is sitting in my room intensely telling me about his video game theories.

Even though I feel like crap right now – a half hour ago I was angry, upset and depressed and I’m still those things – but I feel slightly better. What I’m trying to say that sometimes life gives you lemons, other times it gives you moths. So make lemonade or go on a mission with your siblings to try and rescue a moth.

Home Learning, Compulsive Hand Washing & Breakdown

Dear Diary,

So I started my home learning experience today. Actually I didn’t start anything – that was the problem. I spent hours staring at my assigned work and barely wrote the date and title. I could not focus no matter how hard I tried, so I decided to have a break from my work today.

If only I could have a break from my brain. I’ve been compulsively washing my hands and mouth. The backs of my hands and my lower face have the rough texture of dry skin that is eerily familiar to when my OCD was at it’s worst. The dry flakes of skin caused by my washing aswell as my acne are what my OCD calls “contaminated” so I feel extremely uncomfortable in my own skin. Everything feels wrong and I want to throw something – or many things.

I can’t focus in my schoolwork and I can’t focus being in my own body. Everything in the world feels wrong and I feel wrong. Part of me wants to have a shower – to give in to my OCD to the extreme sense of not just washing my hands/face but having a full-on “decontamination” but I’ve spent too long training myself to only have a shower every two days.

The world is crazy right now. I want to go to a spa type place and get my skin sorted or at least helped. I want to go on holiday and relax in Center Parcs and most of all I want to go to my therapist and the autism support place I recently joined. I want to not feel like everything I own is going to be ruined by myself.

I’m trying to distract myself by listening to music or scrapbooking but when you’re high on OCD anxiety the sound from headphones or a speaker is too much of a sensory problem; the process scrapbooking is also very difficult when you are frightened of “ruining” everything you own.

My Dog Died Today

My Dad told me this morning that my dog Oscar had died a few hours ago. I got up and rushed downstairs to see my dog in blankets. I touched his fur. We will bury him tomorrow and his body is currently wrapped in blankets in our Summer House.

Regret is the one thing I feel right now; that and guilt.

Five years ago my OCD told me that Oscar was contaminated and so from then on I treated Oscar like he was a monster. I refused to touch, walk or even be near him despite doing so for years. Even in my OCD Rehabilitation I still refused to be near him – refused to be near all my dogs.

Last night when he was sick I kept poking a spot above my eyebrow and it got infected. I put a plaster on it last night and when I took it off this morning it took of a third of my right eyebrow. So now I have an infected spot area and only two thirds of an eyebrow. Things are not going great.

Now I’m in my room with puffy eyes and a deep pit in my stomach. I thought there would be more time to get over my weird dog OCD fears – I thought there would be more time to make an attempt at getting over my OCD dog problems. But there isn’t. He is dead and all I can think about are the walks I refused to take him on, the pats I refused to give him for the last five or so years and my avoidance of him. I am so consumed with contamination that past memories of him prior to him becoming contaminated are almost non-existent.

I feel like I have a hole in my stomach and all I want to do is scream and cry.

Oscar