I’m back to blogging, here’s why…

I’m back to blogging, here’s why…

I have finally reactivated my blog after a years’ hiatus. I think I exhausted myself by throwing myself into this project, too much, too soon. Like most things, I burned myself out and gave up. I find myself doing that all too much in life; I find a project that I am excited about and become consumed by it. It will be my entire focus, it’s all I live and breathe for weeks, maybe months. Then one day, I wake up finding myself completely sick and tired of it, so I throw it all away, usually never to return.

This time, I feel a renewed sense of purpose. I was contacted by a friend of a friend who’s daughter is 13, autistic and suicidal. She was hoping I could speak to the daughter, and perhaps mentor her through her difficulties. Of course I jumped at the opportunity, being a teenage girl on the spectrum was immensely difficult for me, and anytime I get the chance to help out a kindred spirit I welcome it.

But I started thinking… this is the second time I have been reached out to for this purpose, and I pretty much live in a bubble. I don’t really have many friends or much of a social life (by choice), so my reach is very limited. Even so, within my tiny bubble I have encountered two suicidal, teenage ASD girls who find the struggles of dealing with high school, teenagedom and the spectrum entirely too much, and would prefer to end it all. I started thinking how many more of you are out there, going through hell, all alone?

I wanted to end my life at 13. I endured years of bullying… I even received a death threat in my locker in Year 8. I had struggles at home, a stepfather I didn’t get along with. I was miserable at school and at home, and at night would lock myself in my room and dream of ways I could end it all. I was alone and scared, and felt it would have been easier to just not exist. Life was too hard, every day was pain, like I was crawling over shards of glass to reach the end, only to wake up the next day and do it all again.

But I did it. I somehow made it through and you know what? As soon as High School was over, I never saw any of those girls again. Years later, some of my bullies even added me on Facebook and chatted with me as if nothing happened. The more thoughtful ones even apologised for any pain they had caused. We all agreed that we were kids, too immature and careless to understand the pain we caused each other.

My home life changed. I grew up and moved out. As an adult I developed a closer relationship with my mum. Once I was out of the house and away from my stepfather, he was no longer putting a strain on our relationship and mum and I became best friends.

And life went on. I had some fantastic experiences, I fell in love, I had a career, I bought a home, I travelled. There were still struggles, life is filled with them. But with each struggle, I grew stronger, wiser. I learned how to better cope with situations. Things that once debilitated me, suddenly didn’t feel so overwhelming. I slowly learned how to create my own happiness.

Life is like a video game… you start off as a low level character, earning XP and levelling up by exploring and battling mobs. It’s a grind, and it’s hard… enemies hit you hard and you don’t have any gear to help you. But if you keep going, you level up and get better gear. Things become so much easier when you’re higher level, perks and talents that help you in the game are unlocked.

If you quit the game at level 5, all you’ve known is how hard it all is. Keep pushing. The levels you unlock later are worth it.

xo Catherine

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Women on the Spectrum – How many fly under the radar?

Women on the Spectrum – How many fly under the radar?

Something happened to me today that completely and utterly deflated me, undoing all the progress I had made yesterday in setting my life in a new, positive direction.

Firstly I would like to thank anonymouslyautistic for posting about this, which pretty much sums up the many issues women and girls with ASD face – being underdiagnosed or even misdiagnosed as so many of our symptoms overlap with other things. This is the problem I faced today.

I was apprehensive about going to a psychiatrist. I have always left appointments more confused and miserable then when I went in. I had hoped today’s visit would be more positive – I have a clear understanding of what I have, I know how it affects me. I can describe in detail all the little things that I used to think were normal – banging my head when frustrated, the issues I experience from sensory overload – instead of leaving them out and considering them just normal and not interesting enough to discuss. Armed with all this new information I have learned about myself since my diagnosis from my long term psychologist who specialises in ASD, I thought “maybe this time will be different”.

Why bother going? Without going into too much detail about my personal circumstances, I need a diagnosis from a doctor or a psychiatrist in order to put in place some things that will help me integrate into a supportive workplace and be more financially independent. I have found that my diagnosis, although recognised and acceptable to most organisations and people I deal with, is now not good enough for the government. This is most upsetting but unfortunately, the way it is. So even though I have never had a correct diagnosis from a psychiatrist, back I go and spend $400 that I don’t have to get a piece of paper that tells me what I already know.

TL;DR: I have a piece of a paper. It’s not good enough for government. Need a more expensive piece of paper.

The psychiatrist was fine, don’t get me wrong. I am not down on psychiatrists at all, they do fantastic work with a lot of people and I am not undermining that. It just so happens that the ones I have seen in the past saw something in me that made sense to them, and they ran with it. My point being, it is such an easy thing to do with girls on the spectrum. We camouflage ourselves well, it is a skill we have developed to fit in and not appear different, and so many of our symptoms align with many other conditions it is no surprise that it is missed. But today was a let down, I had what I consider to be an open and shut case of Autism. So why was it ignored, again?

Firstly, the psychiatrist kept interrupting me. For anyone on the spectrum you will know that this completely derails you. I kept forgetting my points, forgetting to include parts of my behaviour that really cemented my ASD diagnosis, trailing off and losing my focus. Because of this I felt like I wasn’t able to properly articulate myself, and I found myself being guided down avenues that weren’t particularly relevant, for example, I would be trying to explain my sensory issues and how they affect my daily life. What I wanted to say that places with a lot of people and noises and lights and unexpected movements frighten me, and explain the methods I have of dealing with these fears (eg: putting on sunglasses to avoid bright lights, wearing noise-cancelling headphones in noisy places, etc). But what actually happened is this:

“…so when I go outside I get bad anxiety from all the movement and all the people, like for instance when I avoid going to busy shopping centres because…”

“Have you always avoided going to places you know people will be?”

“…Well, yes, but…”

“And when you were growing up, you mentioned you were bullied by other children at school. Did this make you avoid school?”

“Yes…” And suddenly we are talking about past traumas and things and I am thinking, here we go, another diagnosis of Borderline Personality Disorder or some such thing and before you know it, he is talking about Avoidant Personality Disorder. I had never heard of this before, so I didn’t have the knowledge to know whether it fit me or not. Since arriving home I have done some research and no, it does not fit whatsoever.

“People with avoidant personality disorder experience long-standing feelings of inadequacy and are extremely sensitive to what others think about them. These feelings of inadequacy leads to the person to be socially inhibited and feel socially inept. Because of these feelings of inadequacy and inhibition, the person with avoidant personality disorder will seek to avoid work, school and any activities that involve socializing or interacting with others” (Bressert, 2015)

Ok, I guess this kinda fits? But there’s more:

“…They desire affection and acceptance and may fantasize about idealized relationships with others.”

NOPE. I can’t stand affection. Don’t really need acceptance, either. I’m just fine living life by myself and playing video games. And fantasizing about idealized relationships? I guess? But only when I’ve been really unhappy with my life, and who doesn’t fantasize about having things differently when they are in a pit of despair?

The more I read, the more I realised that this didn’t fit at all. The psychiatrist did not diagnose me with it, but he tossed around the idea and now I am reading more about it, I understand where he was trying to go with his line of questioning. As it has happened before, it seems that something I have said has triggered an idea centering on a particular condition, which directs the line of questioning, which may produce more evidence (or not) to back up this idea, and then suddenly it’s entrenched in the professional’s mind that this is what you have and they don’t really look at anything else.

What happened today reminded me of the Girls with Autism: Flying under the Radar post, and I had to go back and read it in more detail and reading through the mini-guide was a revelation. Sure enough, it echoed the issues I have faced my entire life. And that got me thinking further, how many girls and women are still struggling through their lives, not knowing why they are different and getting many different but incorrect answers from health professionals? Girls on the spectrum don’t usually want to make waves, so how many of them just meekly accept these diagnoses and continue on without the tools or knowledge to help them live a more fulfilling and easy life?

So, rather than change the name of my blog to “Everyday Borderline Personality Disorder and Avoidant Personality Disorder with co-morbid Major Depressive Disorder and Anxiety Disorder Blog”, I might just stick with “Everyday Autism Blog” and continue in my search for that piece of paper. Wish me luck.

 

References:

Bressert, Steve. 2015. “Avoidant Personality Disorder Symptoms.” Psych Central. http://psychcentral.com/disorders/avoidant-personality-disorder-symptoms/.

Egerton, Jo and Barry Carpenter. 2016. “Girls and Autism: Flying Under the Radar.” Accessed June 1st, http://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-radar.html.

 

Dealing with change, no chips, and a back rub.

Dealing with change, no chips, and a back rub.

Today I went to the chiropractor for the first time since moving across the bay and wow, was it weird. I’ve been seeing the same chiropractor for years and seeing someone different has been something I have been putting off. Finally after my third sleepless night from back pain, I booked in to see a chiropractor. Why did I choose him? He uses the same instruments as my old chiropractor. He has the same furniture, same chair, same patient bed, it was just like seeing my old chiropractor. I successfully managed change without really changing much, and this was the best I could ask for.

My new chiropractor quickly identified the same problem areas as my previous chiro, and started to work. He was warm and chatty and friendly, which instantly made me nervous. As I feel I must mirror the other person to put them at ease with me, being around bubbly people is exhausting. Fortunately I had someone with me who could handle the pleasantries while I stayed as quiet as possible, only answering direct questions when necessary.

I had neglected my back for too long, and not kept it strong with exercise, so I was in bad shape when the chiro pushed his fingers into my spine. “Does that hurt?” He asked, prodding the vertebrae that was poking out of my back. He might have been branding my nerves with hot needles. “Mm hmm” I mumbled through gritted teeth. With one push there was a clatter of cracks and my back was free again. “Thank goodness” I thought. But it wasn’t over. He oiled up his hands and I braced myself for pain…

He gave me a back rub.

I can’t adequately describe what a back rub feels like for me. Skin on skin contact is something I can only tolerate for a very brief period of time before it starts to hurt. Sometimes it hurts as soon as I am touched, even the slightest brush of fingers on my arm feels like agony. But it isn’t really – it is just my brain not being able to process that information properly.

What’s even worse than skin on skin contact? Oiled skin on skin contact. The added heat just makes everything worse. I lay there with my fists balled up, clenching my teeth as the chiropractor gave my muscles a brief massage, torn between wanting to tell him he was hurting me to not wanting to offend him or cause a scene. He must have realised something was wrong and asked if I was in pain. I told him I was and explained that I had sensory issues. He stopped immediately and profusely apologised. I don’t know what was worse, the painful back rub or feeling like I’d made a total stranger feel bad. I slunk off to the change room feeling guilty and uncomfortable.

There are a myriad of problems presented to the Autistic mind when dealing with day to day life. Events and interactions that come and go unnoticed by the neurotypical can be arduous and complex to the autistic. Fortunately  I can control my inner struggle to an extent, while in public I can usually fake a smile and act the part and my autism goes unnoticed. However, the cost of this is great anxiety, stress and often leads to shutting down. Sometimes it even manifests itself in other ways. Tonight, for example, I was still hungry after dinner, so I grabbed a pack of chips from the cupboard. “Oh, don’t open them,” said my roommate. “I was saving those.” I instantly flew into a rage and threw the chips back in the pantry and stomped to my room. I wasn’t actually angry about the chips – I didn’t even like that flavour. I had just had a stressful day and had internalised it all, not wishing to cause a scene, but later causing a scene over something unrelated in front of someone I was more comfortable with being myself around.

Maybe I need to do something to relax… Get a massage, maybe? -.-