What is wrong with me??

So, it’s a bit of a running joke between Paul and me that I occasionally have “a case of the dropsies” wherein I just seem to fumble and drop EVERYTHING.  Thankfully I’ve not dropped any dishes or glasses, but I’ll drop my keys when trying to hang them on the hook, or when I’m getting my tablets out in the evening, I’ll end up knocking too many out of the bottle and send one or two pills flying to the floor (or the bottle itself after screwing the top back on)… and I’ll do that with more than one bottle of tablets.  On Friday, I had a mini-meltdown after I dropped a container of Chinese food leftovers as I was trying to put them on a shelf in the fridge… rather than pushing another container out of the way with my other hand, I tried pushing it aside with the container of leftovers I was hoping to refrigerate for the next day… it fell in slow motion, and as the top came off, it all had to be binned.  I was so upset… like, not just at the waste of food, but that yet again I’ve fucking dropped something and it’s so stupid.

Now, in my research into Autism and seeing a correlation with Dyspraxia, I couldn’t help but wonder if I may have a certain degree of Dyspraxia too.  I was NEVER good in gym class in school – like, any game which used a ball, you could guarantee that it’d hit me in the face at least once.  Tennis?  Sheer hilarity as I flailed around with the racket trying to hit the ball… and if I did manage to make contact, it’d go flying over the fence and I’d get a disappointed tut from my partner and gym teacher.  And when it came to art class, I couldn’t draw or paint or do anything particularly well – despite having fabulous ideas in my mind, I just could not translate them to paper (or any other medium) because I just didn’t have the right level of manual dexterity, which always frustrated me.  The only reason I didn’t graduate nearer the top of my class than I did was because my gym and art grades were lower than my academic subjects (before final grades were issued, I was estimated ranked 9th, but years later when I requested my transcripts for UK equivalence verification, it turns out that I was actually 8th out of 150-odd in the class #HumbleBrag).

I thought that because I am just not athletic by any definition, I just thought it was down to everyone being different.  It never occurred to me that there might be a name for it other than just “clumsy”.

I have been feeling quite stressed lately, especially in regard to work because I’ve had a few quite complex cases blowing up and parents persistently ringing (“stalking”) me which has been enough to make me want to retreat into my bubble of solitude and protection, which is not exactly easy to do when you have a job to do.

Is it possible that my stress is manifesting itself into me just being a bit more clumsy than usual, or is it indicative of something more sinister??  Holding my hands out in front of me, they’re not shaky or anything, so I don’t think I’m having any sort of nerve issues, but it’s really making me cross when I keep dropping things.  I don’t know what to do, other than maybe keep track of how often and under what circumstances I’m dropping things.

If anyone has had any sort of similar experience, I would appreciate you leaving a comment below.  Thanks, folks x

I’m so proud of him.

So, Paul was on a team building-type conference today for the banking corporation that he works for… mandatory attendance jobby, despite the fact that he’s IT and not banking.  Anyway, they were focusing on all these soft-skills things and interviewing techniques (which candidate would YOU hire?) and he explained a scenario where you were shown a video in two parts – initial impression (“hello, I’m here for an interview”) and then the interview itself (about a minute long).  The video was stopped after the initial impression and people had to say “to hire” or “not hire”.  In one of the videos, a middle-aged woman walked into the room, was quite nervous, shy, didn’t make eye contact, and tripped over her words when saying she was there for the interview.  At this point, about 60% of the room showed “not hire” cards.  The video was then resumed and she continued to not make eye contact, couldn’t get her words out, and asked to look at some of the questions again.  Now, just on reading that, I’m sure many of you may think that she may be on the Spectrum, perhaps at the Asperger’s end of it.  Please bear in mind that while the example was not illustrating neurodiverse interviewing techniques (as she later showed lack of interest and other non-ASD related behaviours).  By the end of the video, 99% of the room said “not hire” and Paul was the only one to hold up the “hire” card, but unfortunately was not called upon to explain his position.  He explained to me that, after watching Employable Me on the BBC, he understands more that those who are high-functioning intellectually but perhaps lower-functioning socially do not often get a fair first impression when it comes to interview situations, and probably explains why so many people on the Spectrum end up going years without being able to successfully land a job; just because one is ‘bad’ at interviewing does not automatically mean that they would be bad at the job they’re interviewing for.  I know I personally have failed at interviews because of my short-term auditory processing difficulties have let me down (before I knew that’s what they were), and I wonder if I had asked for the written questions if that would have also worked against me anyway.  Paul recognises that he himself is most likely on the high-functioning end of the Asperger’s part of the Spectrum, but he is not interested in pursuing a diagnosis for himself because he reckons that he’s developed his own set of coping mechanisms to get through day-to-day interactions.  He acknowledges and supports my desire to pursue a diagnosis for myself and as such “waves the flag” for those with Autism and embracing neurodiversity.  While we both say that neither men nor women on the Spectrum “have it easy”, he accepts where I’m coming from in my perception that it’s almost easier for men to get through life without the context of a diagnosis, whereas it benefits women to put them into that context so when seemingly uncharacteristic behaviours present themselves, they can be explained within a framework.

Even though he didn’t get to explain his position in the training session, I’m still so proud of him for recognising that the way that interviewing scenario was managed was not inclusive nor showed recognition of neurodiversity.

Protecting Oneself

Alternate title: Letting People Down & Feeling Deep Shame and Guilt

I’m having an ethical dilemma… before Christmas, I said I’d go along to this Peter Kay’s Dance for Life event in Birmingham with Polly (a person I am friendly with from this singing group I used to participate in)… and my anxiety was starting to creep up because I couldn’t find any details about it, and then when I realised that Paul & I were going to attend a Thanksgiving service (like a Christening but not) the day after (even though I’d technically agreed to go to the Peter Kay thing prior to the service’s arrangement), I messaged Polly saying that I’m worried about having a very late night when we’d have to get up early for this service where I’m participating in it as well (which isn’t a lie!), but I just feel horrible letting her down and she’s not given me details (bank or PayPal) to pay her back for it.  We’ve left it last week that she was going to try to find someone else to use the ticket, but I’ve not heard back yet and I REALLY do not feel comfortable going anymore… I found a video on YouTube and it basically looks like sensory overload + too many people…

Like, my biggest frustration is that I want to want to go, because it could be a lot of fun, but I’ve already psyched myself out of going and I just can’t bear it.  The primary problem being that the last thing I want to do is upset Polly, but it doesn’t help that I haven’t seen her in months (not since the funeral of a former member of the same singing group) and I’m not close enough with her yet to be able to share this whole Aspie journey that I’m on… I don’t know what to do. 😥

When I’ve had a very full-on experience, it drains me mentally, physically and emotionally… and I worry that if I went along to the Peter Kay thing that I would be coming along to the Thanksgiving service tired and overwhelmed from the night before, especially since I’d be getting back late (after the crush of trying to get out of the venue and ultimately back home) and I don’t fare well on limited sleep, particularly when I need to be my sociable self in a group setting.

It’s very troubling being in my brain… like all of the time.

I feel horribly guilty and am probably beating myself up more than necessary, but that’s what I do best. 😦

Thoughts on Recent Celebrity Deaths

So, I think it’s fair to say that 2016 so far has taken many well-known and influential people, musicians and actors alike.  The reactions on social media are all quite similar (“OMG I can’t believe it! RIP” “Another legend taken too soon” and other sentiments to that effect), and I just feel like I’m maybe taking too pragmatic of an approach to it, because I just feel a brief moment of sadness, have a quiet reflective thought and then carry on.  If anything, I feel like as a member of humanity (and a self-confessed hyper-emotional person) that I should feel sadder than I do, but then feel worse when I don’t.

It reminds me of an episode of Daria, the cartoon television series about a teenage girl who I identified quite significantly with when I was in high school… perhaps Daria will be the subject of another blog post in the near future.  For those of you not familiar with Daria, here is a brief description of her character: “Cynical, pessimistic and sardonic to a terminal degree, Daria’s intellect and academic insight is often counterbalanced by her pronounced lack of motivation… Her trademark characteristic is that she rarely changes her facial expression or the tone of her voice, except for a small satisfied smile akin to the Mona Lisa’s when she is pleased, and sometimes a high-pitched “Eep!” sound when something is suggested or hinted that involves Jane’s brother Trent. In the later episodes, she was more frequently drawn as sad when under emotional stress. Bemused by the world around her, Daria usually reacts to the stupidity of her classmates, faculty and family with a caustic remark, and only lets her emotions show in times of deep frustration.”

The episode I’m referring to is entitled The Misery Chick, where famed Lawndale High alumni quarterback and all-time jackass Tommy Sherman manages to annoy or anger everyone he encounters.  Shortly after his exchange with Daria and Jane, he dies in a freak accident, crushed by the football goal post that was meant to be dedicated in his honour when it falls over on him.  Other students keep coming up to Daria to talk to her and get advice on their sadness and grief because she’s “The Misery Chick”.  In conversation with Brittany (the ditzy cheerleader):

Brittany – It’s like, I feel bad, but I think I should feel worse, and not feeling worse makes me feel bad all over again.
Daria – The truth is, Brittany, is that you are nice, or you wouldn’t be feeling bad at all right now.
Brittany – So… you’re saying that feeling bad about not feeling worse is good?
(pause as Daria lets that one sink in)
Daria – Yes. Yes, that’s exactly what I’m saying.
Brittany – Thanks, Daria! (runs off)
Daria – (writing on notepad) “Feeling bad… not feeling worse… good.”

Jane (Daria’s best friend) gets weirded out by Tommy’s death as she and Daria were the last ones to speak to him before the accident, so she spends most of the episode avoiding Daria.  When Daria finally gets to speak to Jane towards the end of the episode, she beautifully explains why she’s been struggling:

Daria – Are you avoiding me?
Jane – Um… not anymore?
Daria – What’s going on?
Jane – Nothing. I just haven’t felt like talking to anybody.
Daria – I’m not anybody, and I’d like to talk to someone.
Jane – But you’ve been talking to everyone.
Daria – No, everyone’s been talking to me. There’s a difference.
Jane – Well, what do you want to talk about, anyway? You don’t care about what happened.
Daria – How can you say that?
Jane – You’ve been treating it like, “Oh well, another stupid day.” The guy died.
Daria – I know he died! I’m sorry he died! But I’m not going to pretend that he was some great person when he wasn’t. People aren’t upset because Tommy Sherman died; they’re upset because they’re going to die.
Jane – That’s understandable.
Daria – Okay, but you know what I’ve been hearing? “You know how I feel, Daria. You’re gloomy. I knew I can talk to you, Daria. You’re always miserable.” Tragedy hits the school and everyone thinks of me. A popular guy died, and now I’m popular because I’m the misery chick. But I’m not miserable. I’m just not like them.

Bringing it all back to the celebrity deaths that have hit this year so far…

People die every day.  Sometimes it’s someone we know personally, but oftentimes it’s someone we don’t know at all.  I think lately it’s seemed that more celebrities have died in a shorter space of time (than at any other time) because it’s people who have been very visible in the public eye who have died.  You think about it, there were loads of actors and musicians in the first half of the 20th century who died without much acknowledgement because the media and information sharing of today was non-existent back then.  People who have died recently may have started their careers in the 1950s/60s (or even 1970s/80s), and with the advent of television and globalisation of the media and information sharing over the subsequent decades means that these people have had an impact across generations, so their passing makes it feel more personal to us because we feel like we’ve grown up with them and have fond memories with strong emotions attached.  But ultimately, it’s the stark realisation that if these seemingly superhuman people are just as mortal as the rest of us, then that means one day we will face our own mortality, which as humans we’re very good at denying and avoiding.

I don’t want to come across as an insensitive person and I hope I’ve made sense… I may come back in a few days, re-read it and think “geez, you really screwed that up!” and do a full re-write.  But I’ve gone back and read it aloud and it seems to make the point I had set out to make.

In summary, I don’t think it’s a case that proportionately any more celebrities have died than at any other time in history… I reckon that it’s a case that more people are known through the media (film, television, and the internet) and it just seems like more well-known people have died, but it’s only because there are more of them that are known to us as the general public (that was very difficult to word!).

My thoughts are with the families and friends of those lost, but I am thankful for the impression left on the world that each and every one of them has made. Love & light xx

Edit: 22/04/16 at 23:45 – I was right! Look at this article published on the BBC News website (which only just appeared in my news feed, despite it being shared on the BBC Breakfast Facebook page this morning).

I don’t know what the answer is.

Had a long chat with my Dad this afternoon which, while I know his intentions are good, has left me cognitively exhausted. We were chatting about the possibility of me making a career change out of what I’m doing currently (as I had the realisation last week that after only 20 months there, I’m now at the top of my pay scale, which is depressing in and of itself) and maybe putting my aptitude for computers to use. While I see where he’s coming from, the idea doesn’t excite me greatly; sure, I managed to teach myself HTML when I was 13ish, but at 31, I don’t know if I’d be able to pick it up sufficiently to be able to enter the field at my age without any formal qualifications in computer sciences. Plus, I feel that I’d just be moving from one high-stress area to another with little personal reward (i.e. feeling of satisfaction or making a positive difference).

What I would love to do is open a sensory and support centre for people on the spectrum, especially support for adults. I have been looking into local support for adults on the spectrum and any groups I’ve found are for parents with children on the spectrum, but not for adults on the spectrum themselves. I work outside my county of residence and in that county’s main city, there are two such support services that I would love to combine into one in my local area. One service is a sensory centre – think like a sensory room in a special school, but several rooms in one place – for children, young people and adults with special needs… I would have so much fun picking out and setting up the sensory toys and objects, lighting and surfaces… It’d be AMAZING. The second service is a social self-help group for adults with Asperger’s Syndrome. As there is nothing like either of these services in my local area, why not use my social work skills to help bring support like this to life? I am certain that there is a viable target audience for it and would love to pioneer this, but I would need help because the businessy side of planning would be overwhelming… plus I have no money to do this and would need help finding whatever funding avenues may be available.

I don’t know what the answer is, but I don’t think I can stay where I’m at for much longer because I can see myself burning out, especially because there isn’t much room left for progression and I have no aspirations to become a manager… I don’t envy any of the nonsense the managers in my team contend with on a daily basis.

If any readers have any ideas, I’d gladly welcome constructive advice.

I’ll leave you with an image shared on the Asperger’s Syndrome Awareness – Bryan’s Advocacy page today which resonated quite strongly with me.

image

Hello, World!

A special “hello” to anyone stumbling across this blog for the first time.  I reached out to Bryan on the Facebook page, Asperger’s Syndrome Awareness – Bryan’s Advocacy, asking if he would check out my blog and, if he felt it was worthy of sharing, to please share on his page.  I messaged explaining how I have been doing an anonymous blog on WordPress to share my journey and to hopefully help other women who have made it into adulthood and still feel like they’re not entirely understood.  I’m not about gaining followers (like people on Instagram or Twitter), but I just want to share my experience and hopefully help others (especially women) out.

Well, I was humbled that Bryan obliged this morning and since 10:36 this morning (when Bryan shared the link on Facebook) to 16:36, I have had 600 views from all around the world (update: 800 views by 22:15!).  I hope that someone finds what I’ve written thus far helpful, even if it is just one person. 🙂

Happy Friday and have a great weekend, wherever you are and whatever you may be doing! 🙂

That took effort.

So, just over a week ago, I emailed my client questionnaire to the Autism Spectrum Condition Diagnostic Assessment Team… Well, actually three versions of the same questionnaire: the first being a quick overview of things, the second being a much more in-depth explanation of my needs and experiences with quotes from Aspergirls (which, if you have been following this blog, has greatly helped me in the process of requesting an assessment), and the third being a slightly abridged version of the second one with the quotes from the book taken out.  I felt it necessary to embellish on things after completing the first one because it did not really give much by way of explaining what I find difficult in particular but realised the extended version may be quite long.  This way, the clinician can look at whichever one they wish – I know that all information has been shared from my end.

I also asked in my email for an update in terms of timescales for an appointment, because I feel that my mental health is becoming progressively more fragile the longer I am waiting for this and the uncertainty is heightening my anxiety greatly.  Even if I could be given an estimate as to which month I am likely to be given an appointment, I would have been most grateful.  The lady I had been emailing had said a few months ago that the service was looking to recruit more assessors and I was (understandably) wondering if this has affected timescales for appointments.

It was, needless to say, disheartening to have the one line reply to my email: “Thank you for the attached documents, I will be in touch as soon as I have an appointment for you.”

In every email exchange, I have made mention of my anxiety, stress, and fragile mental health… but it appears to mean very little. I feel like, if you’re going to be working in a service for people who suspect they are on the spectrum, then it would be beneficial if you have a shred of empathy for the clients you’re encountering.

So, just over a week has passed since this email exchange and it’s been playing on my mind… not helped by the increasing stress at work. I finally mustered up the courage to ring the service to ask again about timescales.  The crazy thing is that whenever I need to talk to someone on the phone for virtually anything else in life, while I don’t like it, I can manage okay enough… but today, I was stammering and finding it difficult to keep myself together to ask… I can’t quite explain it, but I almost felt like my articulate self ran for the hills and left my vulnerable self behind without any support. I was told that they’re seeing clients referred in June/July (2015) currently, so we’re looking more at July/August for me, as (through no fault of my own!!) they only added me to the waiting list in September. I feel a bit better knowing that it shouldn’t be too much longer, but at the same time, I’m frustrated that it was such a palaver in the first place. Had I not chased up my referral because I hadn’t heard anything back in the estimated six weeks, I would still be waiting!! The fax from my GP surgery was never received (honestly, who uses fax anymore???) and it took me nearly having a meltdown over the phone to my surgery to get it sorted out… It still gives me a flutter of anxiety when I think about it now… quite similar to the anxiety I felt when things were pending with the mortgage and taking AGES to finish. I suppose it’s the whole “managing expectations” and not being told one thing and it being something completely different or just flat-out wrong or late.

Anyway, I’m hoping that before the end of August, I will at least have had my assessment and, hopefully before my 32nd birthday, I’ll know for sure and have the validation I’ve been after since last summer. It’s crazy how much time has passed, yet at the same time, it feels like it’s dragging.

I’ll quit blithering now… I’ll be back soon with hopefully something more interesting for you all to read. 🙂

Join the Thunderclap

From an email received by The National Autistic Society today:

World Autism Awareness Day is fast approaching and we’ve been hard at work to get the UK to take notice like never before. This Friday sees the launch of Too Much Information, our biggest ever campaign to improve autism understanding.

Check out the trailer for a short film we’ve made to give viewers a chance to see the world through the eyes of someone autistic. This film launches on Friday, but as you are one of our loyal supporters, we wanted you to see a sneak peek.

We need this film to go viral so that as many people as possible understand what it’s like to be autistic.

You can help by signing up to our ‘thunderclap’ today. Everyone who joins the thunderclap will automatically share our film on Facebook or Twitter at the exact same time. If lots of you do it, the film will be hard to ignore.

I’ve pledged my support – will you? 🙂

Just a quick one for now.

I know it’s been a while again, but work has really been using any extra CPU (computer analogy of how my mind works) and by the time I’ve gotten home, I’m too cognitively exhausted to write anything.

I’ve just this morning discovered a Facebook page called the Autism Women’s Network and read an article shared a few days ago which perfectly explains how I feel while I have this diagnostic assessment pending.

This was what I commented on the post and (hopefully) it’ll make sense when you read the article (link here: As a Woman on the Autistic Spectrum, My Diagnosis was Delayed because of Gender Stereotypes):

“I’m a bit nervous posting publicly, but I’m going to give it a shot. I am awaiting assessment for AS (more specifically Aspergers) because after attending a convention/conference last summer, hearing various women speaking about their experiences of late diagnosis felt like they were telling me my own life right back to me. I started having conflicting feelings, thinking “how could I possibly be?” which shifted to “how could I not see this before?” I’ve always been a bit quirky, but because I did well in school despite being subtly bullied, and managed to go through university and get a job, and landed in a relationship where I could more clearly see Aspergers traits in my (now) husband, I was too busy looking outwards and not seeing how any of the traits might have applied to me… But this may also be down to the male-centric understanding of Autism up until recent years. I needed to decant the things swirling in my head and started writing a document outlining how I thought I might fit the criteria, and that came out to be 29 pages long – single spaced, size 11 font. It took me a few weeks to build up the courage to print this and request an assessment from my GP, which she immediately agreed with. I’m now still waiting for an appointment to be made. The more time goes on and the more I ruminate on things, the harder I’m finding it to cope with things that I was somehow able to before because I had to because I couldn’t articulate why it was taking me more effort to cope than those around me. I’ve not mentioned to many people that I think I’m Autistic/Aspergerian because of the exact same reason this author highlighted – #SheCantBeAutistic. I just hope that I can make it through the assessment process and have a certain sense of closure on the one hand, but a new way to explain myself in the context of society on the other hand. Thank you for reading this.”

I have also had a harebrained idea about a charity/social enterprise that I would love to start… But I may have to keep you waiting a bit longer before I show my hand on that one just yet.

Addition (25/03/2016): found another two links today which share other women’s stories about the problems presented with gender stereotypes and being failed by the system – How Gender Stereotypes Prevent Women With Autism From Unmasking Their True Selves and Is the NHS failing women with autism?

I’m sick of being sick.

Hello to my handful of followers.  Sorry it’s been a while… took a chance with attending a party for our friends’ daughter’s first birthday, aaaaand as to be expected, there were sniffly babies (January, ya know) and I came down with a viral infection which knocked me out of work for a week.  I’ve still got the cough lingering, but it’s nowhere near as bad as it was a few weeks ago.  Needless to say, I’ve been trying to get myself feeling better and back into my routine, which has been thrown off by being poorly.

I’ve been feeling a bit lost as well.  I sang with Rock Choir locally for about three years and made the decision to leave at the end of 2014, and had the break from singing from January to August 2015.  I miss the friends I had in Rock Choir, even if they were only “I see them once a week to have a laugh and a sing” friends.

I think I’m experiencing a bit of after-effect trauma (without trying to sound dramatic, but I cannot think of another word for it) from having to leave the a capella group that I had started attending in late August [see 2015… over already?].  While they were lovely to listen to, I was getting bored with sitting doing nothing and not being up there singing.  The expectation for perfection was quite high, which I didn’t think was realistic for me to achieve consistently in the long term and began to intimidate me and make me doubt my singing abilities.  The final straw for me was being told off for sitting and reading my Kindle one evening because some people on the risers said it was “distracting”… I don’t know how sitting still reading could be distracting, but like I said, it was a long way to go to sit and do nothing, so I thought I’d just read because they weren’t singing anything I could participate with.  I haven’t felt that sinking horrible feeling since I was in school being told off for some slight like chatting when we should have been quiet or something.

I had befriended several of the women on Facebook in my time being there, and I found that several had unfriended me after I decided to leave. The level that this actually upset me surprised me, because I figured, on the one hand, I was quite unlikely to see any of them ever again, but on the other, I was not adverse to continuing to support them by attending future shows, etc. and I was hurt that rather than messaging me to see what was up (because I was too distraught to message them all individually), they just unfriended (or in one case blocked!) me. I don’t know if I’ve just sabotaged it all by being truthful about my feelings about what happened, but I guess I’ll never know.

Following that, I was trying to find a middle ground between Rock Choir and that a capella group.  I stumbled across an a cappella community choir, but one that’s not about perfection, but just singing with other people.  I attended one session in mid-January and have not been back since as I became poorly, which has had me coughing a fair amount, thus hindering my ability to sing.  Because it’s a community choir, a lot of the people who attend are local residents, so I feel a bit of an outsider because I’m not part of that immediate community; I never felt that with Rock Choir, because I know my back row buddies both traveled from even further than me.  The leader of the community choir was so lovely and was very welcoming; I guess because I lost my momentum after the first session because of being poorly and I’m questioning my return because I’m still not sure if it’s a proper fit for me.

Why I came to the very difficult decision about leaving Rock Choir in the first place was because I was just not enjoying the song selection anymore, and it was a lot of money to pay to not be 100% enjoying it anymore.  I stuck with it for so long because I enjoyed the social aspect most, but also I suppose because it became routine.  Now, I find myself in a position of, “Do I keep trying this community choir, or do I go back to Rock Choir?”

I don’t like this feeling that I feel.  I just feel icky inside, that I don’t like myself, that I feel like I’ve somehow done something horribly wrong.  I was really surprised at some of the people who unfriended me from the a capella group… ones that I thought I had struck a bit of a friendship with.  But I guess it’s a bit like an exclusive club; you’re either in or out, and I worked my way out.  Part of me wishes I hadn’t even tried because I’d have been spared the emotional turmoil.  But on the other hand, that’s a very slippery slope into becoming a total recluse.

I just wish I knew the answer.