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.

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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”.

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.

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?

Am I or am I not?

Just started reading another book about Autism called I Think I Might Be Autistic [UK Kindle Edition] by Cynthia Kim [Musings of an Aspie]. I read how Asperger’s Syndrome is now wrapped up into the overarching Autistic Spectrum Disorder diagnosis, and reading the technical terminology of the criteria, I thought, “geez, what if I’m wrong about this??” but thankfully Kim broke it down as to what questions to ask which can help to answer the diagnostic criteria – most of which I ended up highlighting as either More Often Than Not Yes, YES and OMG DEFINITELY YES.

It’s very weird being in limbo right now. It fills me with too much anxiety to ring the GP to find out what’s happening with my referral, as it’s probably out of her hands anyway.

I just worry that I’ve adapted my behaviour so much to fit in on a day to day basis that when it comes down to the actual assessment (however that plays out), I’ll end up not being “Autistic enough” to qualify for diagnosis… Then I’ll be back at square one, so to speak.

I’m just going to keep reading and highlighting… I hope that the more information I gather and denote as being relevant, the easier it will be for me to evidence that my experience of life is not the same as the majority of people out there.

Sensory Stuff: Seeking, Sensitivities & Differences

What happens when we experience sensory or emotional overload? Well, different things. Sometimes we get migraines, nausea, sometimes we have meltdowns, and sometimes we just stim. Stimming is simply something we do to soothe ourselves when we are upset, anxious, overloaded, or in pain; to release unpleasant feelings or energy. Soothing stims happen because someone or something is pushing our autistic buttons. We stim from sensory issues, and we stim from anxiety and social or emotional issues. Not stimming when you feel anxious means you’re not releasing the build-up of tension and you risk having a meltdown, or migraine, or acquiring a tic. The trouble with repressing stims is that we tend to pick up destructive habits, or else we just internalise our anxieties and pains instead of releasing them as they happen. (Rudy Simone – Aspergirls: Empowering Females with Asperger Syndrome) [UK Kindle Edition]

Upon reading more about sensory seeking, sensitivities and differences, I started thinking about what I do which could be associated with it, and I was blown away by the length of the list when I came to the end… and I don’t even know if this is everything!  It’s really hard looking at yourself in this respect because you know that you like what you like, but you don’t necessarily realise that you like it because of your sensory needs.

  1. Coarse face scrub – face doesn’t feel clean without it – been using St Ives Apricot Scrub for years.
  2. Chewing gum – I feel anxious when I don’t have gum in my handbag. I like the strong minty flavour and don’t like my mouth feeling gross.
  3. Nail biter for YEARS – I had to start getting gel overlays to stop, though I will still pick the polish off when nearing my next appointment, particularly if I’m bored or need to do something with my hands. I first got gel nails in Dec 2011 before my wedding so I would be used to having them on my hands before the big day (it wasn’t routine!). I will still occasionally tap the grown-out part of the nail between my teeth, though not to bite it off.
  4. Lip Balm – I cannot go to sleep without putting minty Burt’s Bees lip balm on my lips, and I feel anxious when I don’t have a tube in my handbag.
  5. Back Scratching – ever since I was small, I always loved having my back scratched by my parents, and this has carried on with Paul.
  6. Hair Brushing – I really like having someone else brush my hair with a bristly brush, as well as the ‘spidery’ wiry head scratcher.
  7. Hair Style – I hate having wispy strands of hair falling into my face and when I go for a haircut, I tend to ask for a tidy up of the same style and ask for the fringe bits to be kept long enough for me to tuck behind my ear (because I get really cross when I cannot get it to stay behind my ears). Otherwise, I end up tying my hair back part way when it starts driving me crazy. There have been one or two occasions when my anxiety was particularly piqued that I very nearly took a pair of scissors to my hair to get it to stop bothering me, but the more rational part of my mind stepped in and I ended up tying it back. When I pull my hair back, I need to smooth it down at the top of my head, because I don’t like having any bumps in my hair… I don’t know how else to explain that, but I think it looks untidy otherwise.
  8. Twiddle objects – I keep a tiny tin of pliable putty in my bag and use it at work to help me concentrate in meetings or at my desk. I find it very calming. I also always keep a hair tie on my wrist in case I need to tie my hair back (see above), but it also acts as a good discreet twiddle object. I also love ripping used sheets of paper (about 10-15 sheets at once) going for recycling.
  9. Drinks – I like water to be ice cold (or as cold as possible), as tepid/room temperature water makes me feel ill. I can also taste the difference between tap and filtered water, and find unfiltered water makes my stomach feel weird.
  10. Crocheted afghan on our bed – I’ve always loved this Technicolor blanket my mom made, and to this day, I love to weave my fingers through the holes in it (like between the stitched bits, not stretching through the actual stitching). I especially do this at night as I’m falling asleep, and I always have it on the bed, regardless of the weather.
  11. Dirty fingers – I hated “messy play” as a child and always needed a napkin or paper towel nearby. The only messy food I like is chicken wings, and even then I have to clean my fingers between bites. I also really hate the feeling of a long strand of hair stuck on my hand after a shower (especially if it’s someone else’s, which doubly grosses me out) and I don’t like touching rusty metal with my bare hands (e.g. side gate and garage locks).
  12. Dirty dishwater – I have a severe phobia of putting my hands (ungloved) into dirty dishwater, because I remember as a kid putting my hands in the warm soapy water, thinking it was nice, and then pulled my hand out and had a scraggly bit of egg on the back of my hand, which sickened me. Now, if I need to do washing up, I have to wear gloves, because I can’t bear the thought of a rogue piece of food floating in the dishwater ending up touching my hands.
  13. Hot surfaces/water – my fingertips are super sensitive to anything hot. Paul likes to warm plates in the oven for tea, and if he leaves them in a few minutes too long, I can’t pick them up without an oven glove or towel, even though Paul has no problem picking them up (he says his hands are “made of asbestos”). Same with hot water when washing up, I need the gloves on because I can’t touch the water directly without it causing me pain.
  14. Tapping/drumming fingers – If I’m trying to refocus on what I was last working on and my concentration was broken, I’ll sometimes tap my fingers rhythmically on the table to help refocus my mind. I’ll sometimes do this on the steering wheel when I’m driving and listening to music.
  15. Food 1 – at lunch, I always alternate bites of a sandwich/roll (soft) with a crisp (crunchy), and don’t like having a sandwich/roll without a packet of crisps. This has been the case for as long as I can remember. This will sometimes extend itself to other meals, but not every meal every time.
  16. Food 2 – I have some very strong aversions to a few foods, namely bananas, mushrooms, pickles and sliced tomatoes. My Dad always tried to get me to eat bananas when I was a kid, but I always hated the taste, the smell and the texture of them – still do. I’m convinced mushrooms do not agree with my digestive system, because even when I wasn’t aware that they were finely chopped into spaghetti sauce my stepmom made, I ended up having *ahem* a bad time of it afterwards. With tomatoes, I love ketchup and cannot get enough of it when having chips or a burger, but I cannot stand the large slices of tomato that come on sandwiches or burgers at a restaurant, so usually ask for it to be left off (and get a bit annoyed when that request is ignored). I used to love pickles when I was a kid but I think I’ve grown out of it, because they make me feel ill now and, like with tomatoes, I ask for them to be left off (and get a bit annoyed when that request is ignored). Even when they are put on a burger (for instance), it is easy enough for me to remove them, but I see that as wasteful and it taints my burger with the juices from those respective foods, which I don’t like in the first place. I never send it back because that just irritates staff and I don’t want to wait longer for my food but it will reflect in any gratuity left because, as far as I’m concerned, that’s not the best level of service provided.
  17. Food 3 – Paul and I do tend to stay to the same few set meals and I do get bored with them, but it’s difficult to branch out too far and try anything new. We see food prep in three levels: 1 – ready meals (which we don’t really do except for a frozen or fresh pizza from a supermarket); 2 – food assembly (cook fresh chicken and add jar of curry sauce and microwaved packet of rice and naan bread); and 3 – cooking from scratch (we both work full time and don’t have time for this, nor the freezer space to bulk-cook meals and freeze for later). We end up getting into meal ruts but I’m on both sides of it – It’s routine, but it’s also boring!!
  18. Food 4 – I don’t like my food touching… never did when I was a kid, and though I’m more tolerant of it now, I will still separate items (e.g. a small pile of mixed veg next to oven chips, I’ll push the veg away from the chips so they’re not touching and any water from the veg doesn’t make the chips soggy). I will also clear a spot on my plate for sauce (e.g. ketchup, etc.) so that the wrong foods (e.g. veg) don’t touch it. It sounds crazy writing it out, but it’s something I’ve always done. When I was a kid, my Dad would mash together his whole plate of roast beef, mashed potatoes, veg, etc. and it would make me feel ill looking at it, even though I had the exact same meal on my plate. I like knowing what I’m eating by being able to see it.
  19. Glasses and sunglasses – I end up needing to wear sunglasses even when it’s overcast but bright, because it just hurts my eyes. I struggle in the open plan area I work because there are a lot of windows, which is nice to see outside, but as there are so many windows around the building, the sun invariably ends up reflecting off other windows, which means trying to close the blinds to stop it shining onto my monitor or reflecting into my eyes can be a nightmare. This was particularly difficult in winter when the sun was setting earlier and was lower in the sky; it’s not so much a problem now. But there are times that I feel it’s too bright, but I look ridiculous wearing my sunglasses, which actually make things too dark. Since switching to contacts, I’m disinclined to go back to wearing glasses full time, and I hate the look of ‘transitions’ lenses and find that I end up feeling pressure points on the sides of my head behind my ears from wearing glasses for too long. I don’t know what to do about this though. Also, I got irritated wearing certain pairs of glasses because while they were even, my head isn’t (I don’t think anyone’s is perfectly symmetrical!), one lens was too close to my eye and I was hyper-aware of my eyelashes brushing up against it with every blink, so I couldn’t stand to wear them anymore. Contacts are so much better for me because there are no smudges which need wiping off, there’s no chance for ‘rays of light’ to shine down when I’m stood under a light because of smudging on the lens, and I am not constantly having to push them back up my nose because of them sliding down!!
  20. Computer screen settings – I have the window settings on my computer with a grey tint because I find looking at a plain white window too bright and strains my eyes.
  21. Listening to music while working – being in an open plan office is a nightmare for extraneous sound, so I have sound-isolating earbud headphones which I use with my iPod to listen to familiar music. I choose music that I don’t need to actively listen to, so it literally just acts as a “sonic barrier” from everything else going on around me which causes sensory overload (phones ringing, random conversations going on around me, noises from outside when the windows are open, etc.). It drives me CRAZY though when people start talking to me without getting my attention first, because despite me explaining that I can’t hear them until I take the headphones out, they still do it!! It’s not even like I’m listening to the music that loud – I can still hear my phone ring if it goes – but because I’m focused on whatever I’m doing and not actively listening to what’s going on around me, I am not always aware if someone’s come up next to me and started talking… it does my head in.
  22. Bright colours have always soothed me… I love rainbow LED lights with a slow fade between colours. It’s difficult to articulate this any further, but I’ve always loved pretty colours. When I discovered that Sensory Rooms were a thing (and subsequently found out what ‘snoezelen’ is), I just thought I’d end up spending most of my time in a room like that… soooo soothing, soooo relaxing…. taking my mind away from everything that worries me. I’d LOVE to make the 3rd bedroom in our house a sensory/snoezelen room, but I know it would cost a fortune. I also have a dedicated folder of apps on my tablet that I call “Calmers” which are a handful interactive sensory apps, with soothing music and swirling colours. Perhaps I knew more about my own needs before I knew I had them!
  23. When I’m feeling particularly stressed, I like to cuddle up next to Paul and put my head on his chest, as listening to his heartbeat always soothes me. He knows that this is what I do and is very comforting to me when I need a cuddle in this way.

Like I said, this list is not exhaustive, but it’s a fair representation of my sensory differences.