It’s happening… It’s finally happening.

So this morning I had a phone call missed from a number that I thought I recognised… it’s local(-ish) to where I live, so originally thought it might be the dealership where I bought my car begging me to test drive their latest whatever.  Googling the number elicited no hits, so I went to my Gmail inbox and searched for it… and had one email thread as a hit – the Autistic Spectrum Condition Diagnostic Assessment Service.  It was only six minutes since they rang when I called back… spoke to the lady I’ve been emailing and she said that she had to “remember why [she] rang [me] in the first place” and that she’d ring me back in five minutes… fifty five minutes later, she rang back and informed me that there was a cancellation and could I be available tomorrow morning at 9:30 and next Thursday at 14:00… I said of course and thanked her for ringing me.  She confirmed my email address and said she’d be sending me the letter, map to get to the clinic and a photo of the building.

Oh. My. God.

Bearing in mind that in April (see my blog post That took effort.) I was told that I could expect an appointment in July or August, I had been preparing myself for that eventuality, so to have this come up so quickly [especially after emailing my MP as part of Autism Awareness Month through the National Autistic Society, but more on that in a minute], I have had no time to mentally prepare for what is going to happen tomorrow… but perhaps this will be for the better, because it’s not like an interview where you have to put your best self forward… it’ll be better if they see the raw, unmasked and vulnerable version of myself that no one has ever really seen…

I know that writing to my MP (which sounds so uppity and Daily Mail reader outrage-ish) had no impact on there being a cancellation, but I can’t help but wonder if my name has made its way up the list because of sharing my story with him.  I shared a very abridged version as part of a form that the NAS had on their website prior to the Parliamentary debate on 28th April about the national Autism strategy.  I had an email back from him thanking me for sharing my story and:

Delayed diagnosis of autism causes needless suffering, and I am committed to ensuring that people with autism spectrum disorder (ASD) lead fulfilling and rewarding lives, a commitment the Government shares.

Delivery across health care is a Government priority, and the Adult Autism Strategy means we are improving care for those with ASD. Government guidance sets a clear direction for how health and social care can continue to improve services to deliver fulfilling and rewarding lives for people with autism.

The Government has introduced a new birth-to-25 education, health and care plan which sets out in one place all the support families will receive and help bridge the gap between education to employment and independent living.

For children, the Government is funding £750,000 in 2016/17 to the Autism Education Trust to provide autism training to teachers. This ranges from basic awareness training and practical knowledge through to more advanced training for school leaders. To date, the Trust has arranged training for around 90,000 education staff.

NICE guidelines on autism make it clear that people should wait no more than three months to start diagnosis. Every part of the National Health Service should be keeping to these guidelines, however decisions on how money should be spent locally are for clinical commissioning groups.

I know this means a lot to you and I will continue to monitor the situation closely.

I sent back that I was aware of the Education Health & Care Plans as I write them on a daily basis and that, unfortunately, I’m a few years beyond the age range (and to be fair, knowing the criteria, I don’t think I’d fulfil it anyway!) and that “If NICE guidelines indicate no more than a three-month wait (which I was not previously aware of), then things urgently need to be reviewed within the local NHS Foundation Trust, as I am still awaiting confirmation of my assessment appointment.  I have chased up a rough estimate and was advised “possibly July or August”, which will be just over a year after requesting an assessment.  As I originally wrote in my first message: ‘It will be a year in July since I requested my assessment, but because of a breakdown in communication between my GP surgery and the Assessment Team, I emailed and called to chase up my referral (as I’d not heard anything) and it was never received by the Assessment Team. As such, my referral and subsequent place on the waiting list was delayed by 6 weeks, which has caused me a great deal of undue anxiety and stress. Because I have adapted and built up a repertoire of coping skills over the years, I was able to chase it up myself without anyone else’s help, but I must stress how terribly upsetting the whole thing was and I had to emotionally wrestle myself back from the edge of a colossal meltdown.'”

After sending that email reply, a few days later I had a letter from the House of Commons in the post on my MP’s headed paper, saying: “Thank you for emailing me about Autism.  I am very sorry to learn of the challenges you have faced with getting an assessment and support.  I have raised this issue on our behalf with the local NHS Hospitals Trust Foundation and I will let you know of their reply in due course.” [He also included excerpts from the debate but I doubt you’re that interested in all of that from my letter, but you can find it on Hansard – World Autism Awareness Week.]

Thankfully, my managers were both really supportive and wished me luck for tomorrow (not that they wouldn’t be supportive working in a SEN Team, but they could have been a bit awkward with how short notice it was).

On a completely separate note, we went to the chip shop this evening and I opted for a burger instead of my usual battered sausage and curry sauce.  The girl brought over the empty bun to put salad and sauce on it… and I was horrified to see that she had brought over a buttered roll.  Like, a buttered bap that is individually wrapped by the till.  WHAT!?  WHO PUTS BUTTER ON A BURGER?!?  That sounds like an American thing if anything… my polite filter wasn’t on and I said, “Um, I don’t want butter on it.”  and the girl was a bit taken aback and had to warm up an unbuttered roll from the fridge.  I’m sorry, but if we’re paying money for a burger, I should be able to have it how I want it… never before in my life have I ever had a burger with butter, nor will I ever!! Blech!!

So, wish me luck for tomorrow…

Understanding the Spectrum

I came across this on Facebook by Katherine Green [Wishing On Jupiter], an Aspie author I follow, having heard her speak at last year’s Autism Show and befriending her afterward. 🙂
The original post is here: Understanding the Spectrum

The author of the comic has made the images available for sharing, which I am doing here now.  Please note that I am not taking credit for these images and that no copyright infringement is intended.

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All image credits to Rebecca Burgess.  I’m grateful to her for illustrating this so beautifully and simply.  This explains quite clearly what I’ve been struggling to fully express. Below is some text from her original Tumblr post which explains a few bits:

Last but not least, some explanation for anyone unfamiliar with some of the language used…

Neurotypical = the majority/average brain, in context to this a non-autistic person

Neurodiverse = the opposite, but some people use this term to refer to more then just autism, things such as dyslexia, adhd etc.

savant skills = being extremely good in one area of thinking, I guess the most common one is being extremely good at math and having a perfect memory.

Also, my depiction of ‘the spectrum’ is simplified (to be used as a starting point/simple explanation), if you look into it there are a lot of different traits or factors that make up the spectrum!

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.

2015… over already?

The 31st of December.

The last day of the year.

A lot of people become reflective about the year that’s gone past and tell sanctimonious stories of how selfless they were and how they will be an even better person next year.

Some may call me a pessimist, but I prefer to identify a bit more as a realist.  This year has been very challenging in many ways.  The remortgage was a fucking nightmare, but I am grateful that the effort put in has paid off handsomely.  I’m looking forward to living alone with my husband for the first time since April 2012… nearly four years… that’s longer than we were together when we got married (three years to the day).  As hellish as things got, I have to reframe it and look at it like this: if we made it through this less-than-ideal living situation and stuck it through together, then our relationship is stronger than either of us may have perceived previously.  That is something to be very grateful for and proud of.

I also look at this year as a year of two halves, as it was in June when I had the realisation that perhaps the overarching explanation for why I have always felt different may be because I may have undiagnosed Asperger’s Syndrome.  The more I read, the more I am validated and the more I am convinced this is the case.  I just wish that the diagnostic process didn’t have such a long waiting list because I’m sure if I was able to present my evidence, I’d be rubberstamped straightaway.  I know that a diagnosis will not suddenly make me okay or normal or whatever, but it helps me to explain my subtle quirks so much better.  I have spent so much time and energy my whole life to appear “normal” to others whilst feeling like I’m wading through treacle in order to function.  It’s exhausting.  I worry that because I’m articulate and appear sociable that people won’t accept my suspicions of a diagnosis and will discredit me.

Case in point, just last night I sent a “break-up” email to the Musical Director and Section Leader of the acapella chorus I started attending in August and joined in November (after finally passing audition) because it wasn’t shaping up to be quite what I was hoping for or expecting.  I wrote a page and a half email explaining my feelings, yet I was terrified about sending it to these two women.  I spoke to my Dad and read him the email, breaking down crying as I read the last paragraph.  In the body of the email, I had referred to my suspected Asperger’s and that as they haven’t seen me in a broader context, they would not necessarily have picked up on my quirks.

Basically, I was driving 58 miles after a day at work to participate in a 15-minute warm-up to then sit for the next two hours while the rest of the group sang repertoire songs with maybe a 10-minute crack at the end of the evening at one song that I had been sent the teaching track for (after all benefits of the warm-up had worn off).  One evening when I had suspected that I’d be sat doing nothing for the majority of the session, I brought my Kindle to sit and read, thinking that would be less distracting than checking Facebook or playing games on my phone.  Halfway through, I was approached by my Section Leader and told that my reading was “distracting to others on the risers” and to please stop.  Needless to say, I was shocked to be told off like an errant child at school and that took the shine off the apple and left a sour taste.  After a few weeks of not making the long journey, I decided it was time to just put my views down and make a clean break.  I referred to my suspected Asperger’s because I wanted to give a bit of context to my feelings, but I really worry that they’re going to read it and not believe it.  I can’t verbalise how upsetting it would be for me if they react negatively to it all.  I apologised for wasting their time… what it boils down to is that I like singing in a choir because it’s a double sensory experience – the singing itself in harmony with others and listening to the harmonies around you.  Performing is not the most important thing for me; it’s the singing itself that matters most to me.  I’m devastated and horribly embarrassed that I’ve gone this long trialling it and pulling the plug so soon after joining, but I really feel like it’s for the best.  I’m going to try finding a community choir to join where I can just go sing and not worry about being a pitch-perfect performer and just enjoy the activity of singing.

One of the things that touched my heart so much last night was after I finished reading my email to my Dad, he said that what I wrote was perfect and that he wouldn’t change a thing – that he is very proud of how I write and how I’m able to articulate myself in writing.  That made me feel so good when I really needed it because I felt so utterly horrible about what I had hanging over my head.  I feel like it’s been very positive that I’ve started this blog and that I’ve been able to utilise this creative outlet to get my thoughts out, even though my overall reach on the interwebz is quite limited.  I wish that I could write professionally like some of the female authors of books about their experiences of late diagnosis of Autism/Asperger’s… but one has to have a slightly wider reach in order for that to happen.  It’d be nice if a publisher or similar came across my blog and was like, “we love how you write! Please write for us!”  But I’m not going to hold my breath.

Oh, and I sent the email after I hung up with him and have yet to receive a response; needless to say, I am dreading opening up my inbox now because I don’t know if I can face the response just yet.

I’m not one for going out on New Year’s Eve… can’t stand the crowds, drunk people, loud music, or anything that comes along with it.  I saw something on Facebook (might have been a Buzzfeed thing) with Jennifer Lawrence’s picture on a late-night talk show in the States where she is quoted as saying something along the lines of: “I hate New Year’s Eve; I always end up drunk and disappointed.”  Being the wife of a guy in a reasonably good covers band, more New Year’s Eves than not have been spent as just me and the cat, and tonight will be no different.  I blame the media for hyping up how great New Year’s Eve is when really it’s just another midnight… because I like dates and numbers, it’s nice to mentally “turn the page” and “clean the slate”, but other than that, I just don’t see the point of going nuts over it.

In conclusion, this year has been quite challenging in several ways (mortgage, unsuccessful job interviews), but it has been punctuated by a handful of really nice occasions (weekend away to Croyde with friends, Manics concert at Cardiff Castle, meeting up with a friend from elementary school in London, and my cousin’s week-long [yet all too short] visit for my birthday to name a few).  Rewind The Film has just started on my iPod playlist of the Manics’ chronological albums playlist (the only way to listen to a band’s back catalogue), which has been described by Nicky and James as being a very reflective album (as they enter middle-age), and it certainly seems to fit the mood I’m in right now.

To those of you who took a chance and signed up to follow my blog, my sincerest thanks.  Please feel free to share with others, as I hope that my writing can help validate others in their everyday lives in one way or another, suspected Aspie or not.  I wish you all the best for the new year and having a clean slate… the sense of renewal is nice and comforting.

Much love,

Cherry Blossom Tree xx

 

Catastrophising

The tendency to leap to the worst possible conclusion—the “everything will be ruined” option—is known as catastrophizing. Like perfectionism, it’s a common trait of ASD and closely tied to black and white thinking… Autistic individuals are supposed to be bad at generalizing but when it comes to catastrophizing, we’re experts… Thinking, thinking, thinking. That’s what catastrophizing is, right? A bunch of thoughts, one worse than the next, feeding off each other… I don’t understand why, but catastrophizing has a self-soothing effect, even as it makes me feel terrible… I can look at all the logical reasons that I’ve listed to justify how detrimental and unproductive catastrophizing is, but then I get to the last point and I’m right back where I started.   (Cynthia Kim – Nerdy, Shy and Socially Inappropriate: A User Guide to an Asperger Life [UK Kindle Edition])

I could have written all of the above myself… I honestly thought that something was wrong with me because I am so fucking guilty of doing this on an almost daily basis; it’s how I function (or not actually function at all?).  This was quite possibly the most difficult chapter to read so far in this book because it was like being faced with hard truths, but at the same time, I was being validated that the way that I think is actually more associated with Asperger’s than just on its own.  If anything, I feel like the more I read, the more I’m just writing my own diagnosis.  I would feel so much better if I could get this actual assessment started sooner rather than later, but I just cannot afford to pay to go privately to get this done, so I have to wait for the NHS to be able to see me.

Having lost my temper a few times recently with all the mortgage nonsense and having to put up with the daily annoyances of living with a chronically-untidy individual who takes no notice of the impact on their seemingly harmless foibles on someone with suspected AS, when I read the following excerpt from the book, I felt like Cynthia had written my own User Guide to a Meltdown.  If only I’d had this when I was a child, as a stroppy teenager, and as an adult having to deal with more than she expected to… it would have made the resultant flipouts/tantrums/meltdowns less traumatic for all involved.  I suppose knowing now is better than not knowing at all, but my god, this is in the simplest language possible and is just a perfect explanation of what it feels like and what I want from those around me trying to provide comfort and calmness.

What I don’t want to hear:

  • “It’s okay.” [It’s not.]
  • “You need to pull yourself together.” [I will, when I’m ready.]
  • “Everything will be fine.” [I know.]

What I need:

  • space
  • time
  • absence of judgment.

Please don’t ask me if I want to talk about it, because:

  • there’s nothing to talk about
  • I don’t have the resources necessary for talking.

“Will comforting me help?” [No.]
“Do I want the meltdown to be over?” [Yes, but not prematurely.]
“Would I like a hug?” [No.]
“Am I in danger?” [No. I’m conscious of the boundary between stimming and serious self-harm.]
“Do I want company?” [If you’re okay with sitting silently beside me.]
“Can you do anything to make me feel better?” [Probably not. But you can
avoid doing the things that will make it worse.]

Meltdowns are embarrassing. They are a total loss of control. They are humiliating. They make me feel like a child. They are raw, unfiltered exposure.

What I need when I’m winding down:

  • deep pressure
  • quiet
  • understanding
  • to pretend it never happened.

(Cynthia Kim – Nerdy, Shy and Socially Inappropriate: A User Guide to an Asperger Life [UK Kindle Edition])

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.