Self-discovery

Fate vs. Destiny?

or, How Much Are You In Control Of Your Own Path in Life?

I always felt like the path my life was on was very linear and pre-determined… after high school, I went to university.  After undergrad, I went to grad school.  [Those steps were accepted without question because that was just how it was meant to be.] After grad school, I moved to England.  After I moved to England though, it suddenly became unregimented, undetermined, unclear and confusing.  Somehow I managed to float through – got somewhere to live so I wasn’t staying with my Dad & Rita for longer than I had to (but even that was quite serendipitous and didn’t require a whole hell of a lot of effort on my part); landed my first job and subsequently my first permanent job (which then evolved on a yearly basis thanks to council restructuring, so it almost felt like every year was a new ‘school year’ for me again)… it wasn’t until I ended up going to that first fostering agency which threw my life into a tailspin.  In the interview, I only remember the words “recruiting foster carers” being thrown in casually, not identifying it as the core purpose of my job; if I had, I would not have been keen to take on the role, because I felt that my skills did not match that.  I persevered, though it was a nightmare for me, sitting vulnerable in shopping centres and supermarkets, hoping that someone would come and talk to me.  I could not have been more miserable.  I also felt like my manager wasn’t that happy with me and I feel she engineered my exit because, despite my difficulties, I was not getting any support as to what to do (they just assumed I’d “get on with it”, but how can you if you don’t even know where to begin??).  I counted how many days I’d actually worked there, and how they could possibly expect me to recruit a whole caseload of new foster carers in 36 DAYS absolutely baffles me.  GOOD RIDDANCE to the lot of them.  All the short term jobs which followed led to more changes to my routine… teaching assistant roles, Outreach work with teenagers, then the second fostering agency which went down the same avenue as the first eventually… after that, I had consoled myself by saying that I wasn’t actually a failure at being a social worker – I was only failing to find the right role for me and my abilities and skills.  Landing into SEN face first ended up being a blessing in disguise, though I still have little struggles here and there, but I am much more able to handle the demands of this role because it’s far more structured in relation to social care, which was chaotic and reactive rather than planned and regulated.

To a degree, that’s how Paul’s and my relationship progressed too, as I learnt from the examples set by my parents and grandparents: first you date, then you get engaged, then you get married, then you have kids.  I never felt comfortable with the idea of having kids before getting married, obviously not because of religious reasons (see first full paragraph on page 2), but because that wasn’t the right order in which to do things… what makes it “right”, I cannot define… but I feel quite rigid in that respect and can’t explain why.  Obviously, I don’t have to worry about that, because we clearly dated, got engaged and then got married, but I think I would have panicked a bit if I became pregnant “out of sequence”… but again we were both taking the appropriate steps to ensure that didn’t happen.

It’s been a while…

…and a ridiculously busy and hellish month.  My life is not that interesting to divulge all here but I felt I needed to “check in” as it’s been a few weeks since I last posted.

The month started in a pretty standard way, and the first weekend saw me attend my first “proper” hen weekend [n.b. my own hen do was VERY low-key because I knew that the usual shenanigans weren’t for me and I am a bit of a control freak and did not want to relinquish responsibility to someone else].  I was borderline petrified because I went into it really only knowing the bride-to-be and her soon-to-be sister in law, and was pleasantly surprised when I found that I got along really well with most of the other attendees (there was one girl who had a serious grump on the whole two days and I gravitated away from her), especially one of the bridesmaids, the bride’s sister, and the honorary “rooster” – a good friend from Sixth Form who happens to be a guy.  He got fully into the whole thing, wearing custom t-shirts, a hot pink tutu, fishnet gloves and a hen party headband with springy boppers on them.  It ended up being a lot of fun… we started off all meeting up in Bath and having a spot of lunch, then a ridiculous uphill walk to the hostel where most of the party were staying (the rooster and I were both going home and coming back the next day), getting into our tutus and other gear, then going back into Bath town centre for a crafty session making fascinators (for those who don’t know, they’re delicate hair decorations which women in the UK wear to weddings).  After beautiful fascinators were made, we went for a drink then dinner at a Thai restaurant and finished the night off at a pub with an open mic night.  The next day we had a spa day with half hour treatments and time spent in the pool and sauna, followed by a late lunch at Prezzo before parting ways to end the weekend.  I was looking forward to the wedding even more following this weekend because I would know more people there and knew that we’d have a great time.

The wedding was yesterday, and even the officiant said it: “I’ve never seen a couple more excited about getting married.”  The bride and groom were both bouncing with excitement and absolutely radiant.  The ceremony was beautiful, the meal was delicious, and the evening entertainment was fantastic.  The groom’s dad’s band played a few cover songs to warm the crowd up, followed by Paul’s band (the groom is the drummer) playing a few songs with the groom himself on the drums, later filled in by the drummer from the first band so the groom was able to enjoy the evening entertainment with his new wife.  It was just a super fun evening from start to finish and I’m glad I’ve got a quiet Sunday to myself today – Paul’s gone off to watch the F1 with some mates.

We’re still not done with the remortgage either… though finally the solicitors seem to have gotten their act together and are speaking with each other.  Annoyingly, we’ve been sent through loads more paperwork for the Land Registry, a lot of which required our signatures to be witnessed… again.  We had loads of paperwork initially to do for the solicitors which required witnesses, and it just boggles my mind, that if all this was going to need to be done anyway, why were we not asked to do all this at the BEGINNING of the process!?!  It’s just so frustrating.  I’m so over all of this and I need it to be done sooner than later.  It looks like at this rate I’ll be lucky if we get this sorted (including the work done to MIL’s flat before she moves in) by my birthday in November!!  It’s been a very long process and I’m just exhausted and sick of it.

OH.  And I nearly forgot.  So, back on the 17th of July, I finally mustered up the courage to take my ‘manifesto’ to the GP to request a referral for an assessment for Asperger Syndrome.  The same day, I was called back by a lovely receptionist to say that my GP agreed to refer me and that she had a form for me to collect, fill in and return.  I went back the same day, filled it in, and returned it on Monday the 20th.  Amongst the paperwork given to me, it said that first contact would be made within four weeks.  Back in my post on the 8th of August (Am I or am I not?), I mentioned about the anxiety I was feeling about chasing up the referral… even though it was only three weeks into the four since I had returned my referral form.  Finally, after six full weeks (4th Sept) I emailed the NHS email address indicated on my paperwork, asking if I could have an update on my referral, only to be told that it had not been received.  My heart sank.  I tried to keep myself calm when ringing my GP surgery to find out what happened, but my voice cracked and I ended up starting to sob.  The receptionist asked who I contacted and I gave her the details, and she said that she or a colleague would ring me back before the end of the day to let me know what’s happened.  Fair play to her, it was sorted within the hour.  The surgery still had my referral form on record, and it appears that the assessment team never received the fax (because we’re *still* faxing in 2015?!), so they verified the number and sent it through again, and verified also that it was received at the other end and phoned me to inform me of this.  So, talking about “recalibrating” my mind on things like I did in my last post, I’ve now got another minimum four-week wait… of which I’m already two full weeks into.

There has been so much going on, as you can see, and my poor little brain has found it all difficult to cope with and I’m desperately trying to stay on top of everything (I’m not even going to get into all the malarkey going on at work), but when I’m feeling particularly overwhelmed, I just shut down and go into “power-saving mode” (I find I use computer analogies a lot to explain how I work).

I just hope that contact is made for my referral soon, because I think the sooner I get this sorted out, the more relief I’ll feel.

I live to fall asleep

When I was a teenager, I’d end up staying awake quite late into the night and sleeping in very late, especially during summer holidays because the lack of structure and regular activities made me feel very disengaged and I thought I might as well sleep.  At university, my erratic sleep pattern continued because there were always far more interesting things going on with my hall mates, so again I’d survive on only a few hours of sleep.  By the time I made it to grad school, I needed to have more discipline with my sleep routine, as my classes were more regularly timed and my work and internship patterns were more consistent.  In the US, Melatonin is available to buy without a prescription, and I started to take this and found it helped my sleeping pattern significantly.  I brought a bottle over with me when I moved here, but when I realised that it was only available on prescription, I panicked.  I have since found that a supplement that Holland & Barrett sells (5-Hydroxytryptophan) mimics the effects of melatonin, so I’ve been taking that for years – almost as long as I’ve been in the UK.

I feel that I would benefit from a melatonin prescription, but felt like up till now that I wouldn’t have been taking seriously and would have been prescribed sleeping pills, which I do not want to take; melatonin and 5HTP help me to fall asleep without feeling groggy or drugged in the morning.

Also, since about 2010, I’ve been using a white noise app to help me get to sleep and stay asleep.  I cannot sleep in a quiet room, as I end up hearing every creak and groan in the house, which keeps me awake and alert, and my brain is constantly running, thinking about what I have to do over the next few days, and I need the white noise to drown out the running commentary in my mind about what’s to come.  I put the timer on the app to turn off when I want to wake up, and I’ve naturally been able to wake up like this for the last three years with no supplementary alarm.  I also have to sleep with the window on the latch and a fan going to move the air around in the room because otherwise, I wake up with a headache due to the stuffy and stale air.  Also, I have to sleep with the sheet tucked up under my chin, because I don’t like the ‘draft’ created by my breathing on my skin.

Anxiety and Stress in one’s chosen career

I moved to the UK to be a social worker, but I lasted in the career less time than it took for me to complete my higher education combined.  I trained to do more therapeutic-type social work; ideally this would have been in a school, focusing more on group and individual work with children and adolescents.  When I arrived in Britain, I found that such roles didn’t really exist for a social work degree (needed a counselling qualification separately) and my first job was in a very busy Children & Families team.  My levels of anxiety and stress were through the roof when I worked in social care – the unpredictability of every day and the high risk of conflict with service users made me incredibly anxious and stressed, leading to periods of being signed off ill by a GP. Since working in SEN, I’ve only been off work when I’ve been genuinely unwell, because I feel far more relaxed and content in this type of work. I still have intermittent ‘spikes’ of anxiety when a case becomes a bit more challenging or complex, but it’s far less intense than when I was a social worker. SEN is much more structured and predictable, as the Code of Practice is quite prescriptive and I like working within clear bounds.

  • Many of us will become interested in psychology and the helping professions along the way, either because of our diagnosis or in search of it. We find we want to nurture and help others in their journeys because we know how hard it can be.
  • Because of a combination of high intelligence, low self-esteem and eagerness to begin our new careers, we sometimes bite off more than we can chew.
  • One of the key things to realise about female AS is this: Society expects us to handle things well based on our intelligence and appearance of normality. Unfortunately, we often demand the same of ourselves.
  • Even if we can handle it academically or intellectually, it doesn’t mean we can handle it physically or emotionally. We need extra time, extra patience, and more sensitivity than most people. Full stop.
  • Of course we must, but we’re not told how in a way that we can actually manage. And unfortunately we find that other people don’t always try to get along with us.
  • Less tolerance for stress also comes with age, but even that has its positive side. Since our anxiety levels have always been very high, and our nerves have been a taut thread pretty much forever, we will now find we have to do something about it or the thread will snap. That means clearly defining to ourselves and others our needs and our boundaries.
(all italicised bullet points quoted from Rudy Simone – Aspergirls: Empowering Females with Asperger Syndrome) [UK Kindle Edition])

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]

 

‘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!!

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.

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.

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?