DISability…

Whilst I’m awaiting assessment, I’m thinking about and processing the potential implications of diagnosis.

Currently, Autism Spectrum Conditions are considered disabilities. The definition of disability is: “1. A physical or mental condition that limits a person’s movements, senses or activities. 2. A disadvantage or handicap, especially one imposed or recognised by the law.”

On the whole, I don’t consider myself limited, disadvantaged or (I hate this word) handicapped. However, there are times when I feel like my anxiety is limiting, especially when it comes to social gatherings, because they’re unstructured, unpredictable, and generally very loud. Knowing that these elements are likely to be present, it does sometimes help if I prepare myself a few days in advance, but even that doesn’t guarantee that I’m going to feel particularly keen to still go along when the day comes. I feel bad when I feel like I have no choice but to cancel or not go, but I can’t fully explain why I don’t feel able to go.

I suppose based on that, (pending diagnosis) that I would actually have a disability, because having Asperger’s Syndrome means that my participation in activities is limited by this condition. However, it still doesn’t feel right to me, because I know that across the vast range of disabilities, I’m still able to do so much more than many other people… It’s just not at all straightforward… But then again, what in life is?

Being Put On The Spot…

I hate answering the phone on the best of days. I especially hate answering the phone at work. You miss out on important facial cues and tone of voice can easily be misinterpreted. Where I work, it seems to be regular practice that if a call comes in from a parent for a young person whose name happens to be associated with your own, then the call is just put through with no warning. For me, it would be great if a message could be taken so I could look at the case file and get my bearings, then ring them back when I feel confident that I can handle the query.

It’s so difficult to explain that you have this difficulty when you appear able… You’re just told to get on with it, and on the inside you’re so anxious but have to hold it together and not have a meltdown… Then you’re just labeled as mentally unstable.

I hope that I am contacted soon about this assessment… I really need to get through this so I’m able to explain (with the benefit of the diagnosis) why I struggle with these seemingly mundane tasks… Trying to explain without it is like trying to explain the taste of something to someone who has never tasted it before… Does that even make sense? My head is in such a muddle… And it’s only Tuesday.

Disclosure… and relief.

“Look in the mirror and see, Autism is different, and that’s okay. Don’t laugh. That is the truth. The prettiest thing Autistic Girls can wear is themselves.” – Student at Limpsfield Grange School from the ITV documentary Girls with Autism

So, that first post was scary for me to publish. And last night, I did something even scarier: I finally told my dad about this journey.

Now, you may be thinking, “well, surely he’d be accepting and understanding, so no big deal,” but I know my dad and I worry like he does, and the last thing I wanted was for him to get upset or start blaming himself for this.

They live about 45 minutes away from us, and the last few months we’ve not really seen each other much. I was determined to not bring this up over the phone, but it was about when we would get together again, and how easy it would be to bring into conversation.

There were fireworks in my local park last night, and Dad and Rita (stepmom) love fireworks, so I texted them to let them know. We were able to meet up to watch the fireworks, which were quite possibly the best I’ve ever seen before, and I suggested that we go grab a drink afterwards, which we did.

After several minutes of chatting and generally catching up, I took the plunge and brought it up. Both of them were very receptive and grateful that I decided to share this with them, and didn’t say anything to the contrary to dissuade me from investigating this. As I started explaining some of my “quirks” and how they indicate Autism/Aspergers, my dad seemed to become a bit reflective. I reiterated that a diagnosis would not change my day-to-day life, but rather would give me a simple signpost for people rather than trying to explain every difference and “quirk” that I experience (which will be the subject of future posts). Dad said that he’d like to know how I get on with the whole assessment process when it commences, and I’m just so relieved to finally have that out in the open. I can’t help but feel like this is kind of similar to what it’s like for someone to come out as gay, but obviously very, very different; I’d never say that it’s the same, because some of the horrible experiences gay people have of being disowned to being physically attacked, which I highly doubt anyone who suspects they’re Autistic would have to endure in the same way (I hope that makes sense).

Anyway, that’s all I’ve got for now. I think for my next post, I’ll start sharing some of my sensory issues/needs/”quirks”.

First Post – putting it out there for the world to read…

Females, from the littlest of girls to the eldest of ladies, continue to fly under the radar of proper diagnosis, eventually landing in worlds where they don’t belong.  Neuroses, schizophrenia, obsessive compulsive disorder, personality disorder, oppositional defiant disorder, anxiety issues, social phobia – these are familiar diagnoses for women beyond a certain age who struggle to make sense of the environment, society, relationship rituals and the like… Simply put, it is downright difficult to tell the world you are a square peg jamming yourself into society’s round hole.

It is not so much that Asperger Syndrome presents differently in girls and women, but that it is perceived differently, and therefore is often not recognised.

For the Aspergirl, everything seems to be about purpose and reasonwhich we don’t always find in the trappings of this noisy, chaotic, confusing world. (Rudy Simone – Aspergirls: Empowering Females with Asperger Syndrome) [UK Kindle Edition]

[n.b. The text is used to supplement my views and is not intended to be an infringement of copyright.]

Since I started working in Special Educational Needs in 2013, I have been exposed more and more to professionals reports about young people who receive Autism diagnoses, and with these reports, at times I couldn’t help but feel like I was reading about myself (e.g.  one little girl diagnosed with Asperger’s around age 7 was indicated as not liking messy play, to which I thought, “What’s wrong with that? Neither did I!” Clearly, that was not the only element which made her receive her diagnosis), but it got me thinking… were my various experiences growing up the way they were because I was actually different from my peers in a more defined way?

As far as I’m aware, Autism was not as widely understood or acknowledged when I was a kid in the 90s.  I knew that there were “geeks” and “nerds” and desperately did my best to not be tarred with that brush, but I always was a bit quirky and not really like my peers.  I only ever had a small group of friends, but frequently felt left out or on the periphery, which by the end of high school ended up with me “going nuclear” on my friend group and just completely cutting myself off from everyone – I didn’t go on the senior class white-water rafting trip (to be honest, the sheer thought of it made me feel turbo anxious), I didn’t go to anyone’s graduation party, I didn’t have a graduation party myself… I didn’t talk to any of them for nearly a year, not until I had to attend the funeral of one of my high school friends from my group (she had a chronic illness and had been very unwell throughout middle and high school), and I was forced to interact with these people again.  Not only was having to process the death and funeral of a 19-year-old friend extremely difficult, but the fact that I was having to face these people that I had cut off so abruptly again was agonising.  I didn’t end up reconnecting with many of them until a few years later through Facebook, but even then, we don’t regularly communicate (the odd birthday greeting here and there, the rare comment on a post, but that’s it).

I never felt like I fit into my hometown, and I always associated it with being outsiders to the town: my mom grew up in the nearby city, and my Dad was from another country, so they weren’t originally from my this town, they didn’t attend high school together, settle down in the town after high school, etc.  as many of my classmates’ parents did.  That and the fact that my family was not religious: this town was a very Christian/Catholic town, and pretty much all of my friends went through Communion and Confirmation, and I had nothing in common with them to talk about at these times because I was raised (effectively) atheist.

I felt a strong urge to leave my hometown after graduating from high school and was painfully bored during summer breaks during my university years when I returned home.  I certainly had no plans to stay in the town into adulthood, as I didn’t have any particularly warm cosy feelings towards it.  I did feel happy enough in the greater region as a whole, but almost felt like it was easier to ‘hit reset’ on everything and start afresh somewhere new, and when the opportunity to come to the UK after grad school presented itself, it seemed a good a place as any to go.  I didn’t want to move to a big city, because it’s sensory overload (hence why I didn’t end up in London), and I didn’t want to move south (I can’t stand the heat, humidity or the accent!), and for some reason moving further west didn’t feel right either, so I felt like I needed to break free from my stifling experience in my hometown region and move out of the country… so I did.  My mother and brother had stopped talking to me by this point, so I felt that I had nothing to lose.  She never explained why she was upset with me, so I’ve had to make sense of it myself.  I think I remind her too much of my Dad, and just because I didn’t share with her that my Dad and I had mended our relationship after nearly a year of silence (because I know what she’s like and she would have just been like, “I told you so!” if it all fell apart again), and she automatically assumed I was being distrustful or something… which I never understood where that came from.  I haven’t spoken to her since 13th July 2008, and our last conversation pretty much ended with her saying, “have a nice life” then hanging up the phone.  She didn’t even ring me (or try to contact me in any way) four years later when my Grandpa died.

When it came to my planning to leave America to come to the UK, with hindsight, I still cannot explain the how or why… I just knew that I needed to do it.  I had the opportunity to be facilitated to move to the UK at the end of grad school, and it seemed like a good idea, so I started planning my life around it.  The fact that I was 23 when I stepped onto that plane with a one-way ticket to the UK baffles me now.  When I think of other 23-year-olds, I think that’s so young now!! But at the same time, it’s not like I felt like I was making an impulsive decision or anything, as it took nearly two years of planning for everything to be in place.  I certainly don’t have any regrets about leaving, because other than my cousins, my Grandpa, and my best friend, I felt like I had nothing to tie me down to my hometown and the greater area; I didn’t have a boyfriend, a pet, a house, or a particularly fantastic job.  I felt like I had nothing to lose by trying something different, and consoled others (not so much for my own sake) that if after six months I didn’t like it, I’d come back, even though I genuinely had no intention of returning (still don’t).

When I started to learn more about Autism, I didn’t initially see it in myself, but more so in my partner, which possibly distracted me enough from looking at the handful of symptoms that I felt that I matched.  If anything, I worried that my problems were more symptomatic of a mental health issue, like OCD, anxiety disorder, borderline personality, etc.  (I had studied Psychopathology in grad school after all.) and I thought it best to keep it quiet, because I didn’t feel like pills or CBT were the answer for me – I wasn’t the problem, everything else around me was.

Attending the Autism Show in June was a significant wake-up call.  I know loads of people say that “we’re all on the spectrum”, and that may be true to some degree, but I genuinely believe, upon serious and at times distressing reflection, that I am an Aspergirl (RS).  I want to pursue a diagnosis because I still strongly feel that we’re living in a man’s world, and as such it’s easier for a man on the spectrum to live the way he wants to without a diagnosis and people won’t think anything of him – “oh, that’s just the way he is.” Because women and girls are expected to fit within a very rigid construct of behaviour, any deviation from that and “well, she’s a f***ing bitch” or worse.  I want this to evidence that I do experience life differently and that I shouldn’t continue to be an outcast because of it.

Thank you for reading this and embarking on this journey with me.