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.

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.

‘Always thought you were a bit weird.’

Autism In The Workplace – The Guardian

This is an article I could have written myself!! I stay out of the tea rounds at work because it’s way too stressful to try to get the drinks done to everyone’s liking… I’m very particular about my tea and just prefer to keep it where I make my own tea, don’t have to worry about anyone screwing it up, and I’m not then indebted to others for making my drinks for me.

Secret Santa does my head in too. Do you get something practical? Do you get something funny? Do you know the person particularly well? You’re basically screwed regardless, so I tried to stay out of it last time (because I was actually asked if I wanted to participate), but ended up getting sucked into it anyway!! I know it’s all in good fun and holiday spirit, yadda yadda yadda, but to the Aspie person, it’s a social construct which is just not worth the hassle.

It’s nice to see that stories like this are being published more!!

Anxiety overload and not able to do anything about it

Good morning folks. I’m having a bit of a wobble and feel the need to share another part of my self-diagnosis ‘manifesto’, which I compiled to evidence why I want to proceed with an assessment as to whether I have Asperger’s/Autism or not.  So far, my first post, sensory post and ‘Just put it back!!’ post were all from this document (I just realised that I’ve not fully explained this before).

Today, I just feel like a raw ball of nerve endings… I’m aware that my pulse is a bit elevated and I just feel a bit on edge… but the annoying thing is THERE IS NO REASON FOR IT.  It’s just a general day, nothing new or exciting or unexpected happening (other than a meeting which I will have absolutely nothing to contribute to), but I’m so off-kilter, I can barely concentrate – hence why I’m taking a few minutes to try to settle myself down and recalibrate before trying to do some actual work again.  I’ve put my iPod on and am listening to This Is My Truth Tell Me Yours… I can’t explain it, but this album soothes me.  The last few weeks I’ve been habitually listening to Rewind The Film and Futurology back to back on repeat, and right now This Is My Truth is hitting the spot… quite apropos that I’ve used that in the context of this blog too.

I feel like my anxiety is constantly at a low-level ‘hum’ in the background – kind of like a running refrigerator – and I can only honestly recall one time in my entire life when I was able to fully relax (cruise holiday in 2010, because I pretty much had nothing to worry about – all meals didn’t need planning, there were plenty of activities to keep us amused if needed, we could do whatever we wanted whenever).  I feel like I have carried this around my whole life, like a type of armour almost, keeping me rigid, hyper-vigilant and alert.  Because of the issues listed related to living with Paul’s mother, whenever I come home, I can’t relax – I have to check things and feel like I have to do this because no one else will because no one else cares.  I don’t feel like this is newly-acquired OCD, because I’ve never been in a living situation like this before where conditions were similar, and I don’t feel like I have an Anxiety Disorder, as it’s been around as long as I can remember, but at a low level, and again it’s only been exacerbated by the living situation.  Up until we’ve smoothed things out, I even restricted how much she saw of my Facebook profile, because I felt like she already had too much of an overview of my daily life by living with us, and I’m entitled to some privacy; just because anyone is listed as a friend on Facebook doesn’t automatically entitle them to full access to anyone’s stuff and I can share what I want with who I want, and it’s none of her damn business.

The misperception of this sensitivity is that we are hard to get along with…paranoid.  Watch for signs of physical and emotional discomfort in your child and don’t expect them to just “get over it”.

The Aspergian need for R&R – ritual and routine – is a way of controlling our world.  It is our security blanket; knowing what to expect, where to expect it, and who to expect it from.  Whether by eating the same foods each day, taking the same route to work, lining underwear up by colour in a drawer: these things make us feel safe on an otherwise precarious planet.

The need for ritual and routine is simplistically labelled as having “control issues” when an observer doesn’t know a person is autistic.  Saying someone has control issues sounds like an accusation – it connotes a psychological neurosis that has an incident or incidents at its base and is within our control to change or get rid of.  This implies that if we just do the work we can eliminate the need for control.  We can lessen our need for rituals and routines, with mindfulness, therapy, and effort but it will never be gone completely.  We need others to understand and tolerate this. (Rudy Simone – Aspergirls: Empowering Females with Asperger Syndrome) [UK Kindle Edition]

 

Bras + Swimwear = RAGE

I’m giving you fair warning now – this will be a quite ranting post that will revolve a lot around body image and living within one’s body.  I will not tolerate and do not need any fat-shaming comments here – anyone with negative comments have no business to pass judgment as they are not my health professional and have no business commenting on what they don’t know.  Sorry to start off defensive, but I know how horrible people can be online.  Like I’ve said on my About Me page, I want this to be a safe space to share my thoughts.  I moderate negative comments anyway and will just delete them, but it’s still hurtful – so just be nice.

I’m not a small woman.  I’m quite curvy and  I have big boobs.  I have sensory issues with clothing and I hate wearing underwired bras.  I find them extremely uncomfortable because the wires poke the tender side areas of my boobs under my arms, the cleavage wires overlap and rub between my boobs because they’re too big/free-flowing to allow the gap the wires try to create, and the pressure of the wires under my boobs on my ribcage just feels restrictive and horrible.  I have managed to find one brand of non-wired bra (which is not a maternity brand!!) which I like and I own a few of the same style; once you find something you like, stock up in case they discontinue it!!  This gives me context for my swimsuit rant.

I have this one-piece swimsuit which I bought from Bravissimo (for bigger boobs) a few years ago.  It is a non-wired swimsuit with a high strap along the back, which gives it a restricted ‘opening’ to climb into the suit at the top to pull up to get around my bottom and hips.  I have grown weary of this because, after a workout around the gym, my sweaty body does not like being manipulated into this particular swimsuit, and Paul wonders why it takes me so long to come out to the pool when we’ve gone into our respective changing rooms at the same time.  I explain that all he has to do is just strip and pull on his swim shorts – job done.  I have more to take off and more of me to fit into this swimsuit.  So I started searching online for plus size/big boob swimwear… the former does not necessarily cater to bigger boobs (just an amorphous shape with presumably small or amorphous boobs), and the latter does not necessarily cater to plus sizes (just skinnier bodies with ample bosoms).  When I can find a site that meets both criteria, I rejoice… until I search for non-wired suits and get landed with one option (usually black) and they’re usually out of stock.  Well, great.

A couple of weeks ago, I finally found a site where I could get a two-piece tankini type thing that fulfils my plus size and big boob criteria.  I ended up buying tankini bottoms from a different site that I love, as they were on sale for £8, and bought the tankini top from this new site, as it was quite expensive on its own and it would have been nearly £100 for the two pieces from that new website alone.

Fast forward to when I received both parts in the post and tried them on – bottoms were fine, but the boobs had virtually no support.  Looked at the tags for the top and it said “best worn with the [branded] swim bra”.  Okayyyy… so I ordered that, thinking I’d give it a try, and it arrived yesterday.  Well, it’s not one of those “put it on with the clasp at the front then turn it around” types, and it’s not exactly easy trying to connect two pieces of plastic smaller than a 50p coin behind your back!!  I got so frustrated after a few minutes of missing that I actually screamed, threw it on the bed and walked out of the room.  Paul offered to help me, and I said there was no point because he couldn’t help me in the locker room at the gym (and there’s no way in hell I’m asking a random stranger to assist either)!!

After a few minutes to cool down, I tried again and succeeded in getting it on… and I’m pretty sure it’s too big.  I bought my bra size, but there’s excess fabric on the cups.  Paul says it looks fine, but I’m not convinced.  I put the tankini top over it, and try on the bottoms with it too… needless to say, I feel more girdled and trussed up than I did on our wedding day (and that was a Trinny & Susannah body shaper)!!  I said that this was definitely not a swimming swimsuit, which Paul quipped, “well we don’t really swim-swim, do we?  We tend to just float around.”  I said, “that’s not the point – if I wanted to ‘swim-swim’, I’d like to be able to feel like I can move and breathe and not feel restricted by what I’m wearing.”  Obviously one must expect that swimwear won’t be as forgiving as normal clothes, but come on – should I really feel like I can’t breathe?!  I’ve decided to try the swimsuit out tonight with one of the Belvia stretchy bras underneath, as that isn’t quite as constrictive as the swim bra, and it should hopefully provide a smidge more support than the tankini top on its own.  If successful, the swim bra is going back – £38 is a lot for a piece of swimwear that is potentially the wrong size and just not nice to wear. (Update from when I first started writing this – Belvia bra it is!)

Ultimately, my issue is that just because underwires make our boobs look good to those around us, we should not sacrifice our comfort for the sake of pleasing others.  I strongly believe in comfort above style, and I think even if I didn’t have these sensory-type issues, I wouldn’t like wearing that type of bra.  I’m a big supporter of Taryn Brumfitt and the Body Image Movement, and am all about EVERYONE loving their bodies regardless of shape or size, so the fact that I got so frustrated with my body and my boobs in particular last night, it was horrible, but it was also kind of okay because it wasn’t me feeling like society says I should look different, but that I’m just frustrated in myself, which I will work on, along with Paul’s support.

I wish to state that he is a supportive partner and wants to be healthier himself and wants to embark on this journey with me (we already go to the gym and Pilates together, we just need to improve things on the eating side); not once have I felt that he wants me to change or is pressuring me to lose weight.

I will admit this was a very ‘stream-of-consciousness’ post and I hope it makes sense… it’s not always easy to decant these frustrations in a coherent manner!