Diagnosis

Autistic Burnout & Regression

I started this draft back in April.

I got as far as the title.

Executive Functions include basic cognitive processes such as attentional control, cognitive inhibition, inhibitory control, working memory, and cognitive flexibility.

Autistic/Aspie Burnout was brilliantly defined by Planet Autism Blog as: “a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to ‘be normal’, fit in and keep up.”

I won’t go into great detail about what specifically happened, but after several months of desperately “treading water” at work, an angry parent aimed their acerbity towards the local authority directly to me in a quite public and personal manner. Having endured years of working as a front-line social worker and various complex situations in SEND, this was the first time that it was made personal, despite me figuratively bending over backwards to sort this case out in a way that the parent would be happy and, of paramount importance, the child would have their needs best met.

When this all kicked off, I was shocked and rendered speechless; I could not believe what I was reading. When I flagged this up to my manager, she was quite comforting and told me to not worry about it (let’s face it – this advice DOES NOT WORK for me). I went home and told my husband about it, and he too said to not worry about it (see above). The next day, we found out that this parent posted his venomous letter publicly to Facebook. Thankfully, the local authority has a team that can approach Facebook to have such posts removed; however, in my mind, it was out there. My name was out there with libelous information about my professionalism and my dedication to my work. I was floored… I was crushed. I was emotionally numb over the course of the weekend, but come Monday, the start of the next work week, I couldn’t bring myself to leave the house. By Tuesday, I couldn’t stop crying. I phoned my GP and was given an urgent appointment, resulting in me being signed off work with stress. My GP even said to me, “I’ve never seen you this low.” When I explained everything that happened, she was very sweet and empathetic and insisted that I be signed off work.

Now, to tie this all in with the title of the blog (that’s why you came here, after all, not to read my long-winded whinge about how a parent was mean to me).

Following my diagnosis nearly one year ago, one could argue that very little in my life changed – I was still me, after all – but I would argue that everything in my life changed. My understanding of myself changed massively. Suddenly, the things I silently suffered with, I had the language to be able to explain them rather than just “deal with it” whilst it was silently causing me agony with an “oh, it’s not a big deal” attitude when it was a massive deal to me. I gained a network of friends – my AsperSisters – who shared my experiences and provided the validation I had craved for so much of my life.

Whilst so many positives came from my diagnosis, there still was a lot of new information flying around my head and I became even more aware of my particular set of needs. Despite identifying these things and the best way to manage them, I kept pushing myself in my usual way… which has led to the burnout.

The burnout where migraines prevent me from getting out of bed, let alone doing anything remotely social and otherwise enjoyable. The burnout where these migraines led to me being physically unwell – a new symptom which I had never experienced before (bearing in mind I’ve suffered from migraines since age 14). The burnout where I am left feeling feeble and useless, not only to myself but to others who rely on me.

The burnout led to the regression. The regression is where things that were once easily completed now take much more cognitive and physical energy. The biggest area in my life where the regression has hit hard is cleaning the house. [Now I will clarify this by saying we don’t live in a filthy house which is on the verge of being condemned, but rather it’s in a perpetual state of “organised chaos”.] I can just about muster the energy to do a superficial clean & tidy if someone is coming round to the house, but doing a full-blown cleaning blitz like I have done in the past requires too much energy. I’m not sure if it’s just because the house is a lot more space to look after than my previous residences and I just can’t mentally break the task down into smaller pieces or what, but there is some sort of disconnect where I just get stuck.

Another area of regression is going shopping at the grocery store or being out in town. It’s not like I particularly enjoy either of these things, but I could certainly just about cope for enough time to get done what I need to and then leave without incident. Now, I will actively wait to go grocery shopping until a guaranteed quiet time (usually around 7pm Friday or Saturday and either 10am or 2pm on a Sunday) and sometimes have had to resort to putting in my earplugs or headphones in order to minimise sensory overload (noisy kids or the rickety stock trolleys staff drag along with squeaking wheels and rattling metal!). The only time we go into town now is when we get haircuts. Whereas before we would wander amongst the shops and look around for a while, our routine now is to go for an early lunch at Jane’s Pantry, maybe nip into Boots first to pick up a few items, then go home.

Going to Pilates once a week has also taken a back seat whilst I’ve been recuperating from this burnout. We are very lucky to have an amazing Pilates instructor local to us and we enjoy her style of teaching, as she looks after every participant individually and advises how to do the exercises in a way that is best for you. Because I’m no longer a member of the gym where we first started going to her classes, we instead go to one of her sessions at a village hall 6.5 miles away from home. However, by the evening on the day of the class, I just don’t have the energy to sit in the traffic that we inevitably hit to get there… trying to get there before the 6pm start to establish ourselves in our preferred place in the hall means leaving ours around 5:20pm… it should not take half an hour to travel 6.5 miles, but it does and it just takes any energy I had out of me. You know The Spoon Theory? Let’s say by 5pm I have about 3 spoons left for the day; 30 minutes of rush hour traffic can easily take away all 3 of those spoons, leaving me susceptible to meltdown.

I also feel bad that I’ve let a new friend down, though she says that she understands. I met Izzie at the Autism Post-Diagnostic Group I attended from March to April through the NHS, and we struck up a friendship quite quickly. She is working on a young adult fantasy novel and I offered to do some reviewing and editing for her whilst she worked on it. I was captivated by her writing and really enjoyed reading it as I was editing, but found that I was only able to do both for a short space of time. It got to the point where she would spend a fair amount of time doing more writing and re-writing that the document that I had to review was no longer current. She had given me the memory stick again and it has just sat in my laptop bag, untouched, for several weeks. I gave it back to her yesterday (after a frantic search because it wasn’t in the part of my laptop bag that I thought I had left it in!) and apologised profusely that I hadn’t done any more reviewing or editing on it. Izzie is so lovely and said it was really okay, but I still felt bad. I told her that before she wants to submit it to give it to me with a deadline, and that whatever I get done prior to that deadline will be however much I actually do. I really think she’s got amazing potential and I hope someone will want to publish it for her.

Hell, even WRITING, something that I thoroughly enjoy, has been hit by this regression cloud. It categorically should not have taken me nearly FOUR MONTHS to write this flippin’ blog, but here we are on the 1st of August and I’m only getting it finished and published now. I’m hoping that this will knock me out of the funk that I’ve been in…

I have always been one to do too much to prove that I’m not lazy and to overcompensate when I feel like I could be misconstrued as such. Now that I understand that there is an explanation behind my reduced energy levels, recognise what autistic burnout is and how it presents in me, I’m hoping that I’ll be able to move forward in a more positive way. I will do my best to do more that makes me happy and less of what drains me and makes me miserable.

Thanks for sticking with me during this whinge and moan. 🙂 🌸

15 Reasons I love my Asperger’s / #actuallyautistic friends

Yet again, The Silent Wave has written an amazing post that I identify so much with. If you don’t already follow her, best to get that sorted out pronto. 😉🌸

the silent wave

Discovering the truth about my Asperger’s/autistic identity was in itself a complete life game-changer.  The discovery alone was its own gift, a head-nod from the universe or the cosmos or whatever that said, “you’ve worked hard enough; you’ve earned a little nudge, a little loving push, a little…secret decoder key that will suddenly clarify your entire life such that when you turn this key, your entire life will make sense to you.”

OK, cool.  Glad we’ve established that. 🙂

If the discovery was that monumental a gift, just wait–there’s more!  My Asperger’s/autism discovery and resulting identity had a ripple effect, a perpetual gift that just keeps giving and giving…

And that, my pretties, is that when I found my true identity, I also found my true community.  The place–and the people–to which and to whom I finally feel like I belong.

Over the past several months, I’ve been attempting to…

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30 Things I’ve learned since learning that I “have” Asperger’s / autism

After a cognitively exhausting two weeks, coming across this has been a relief. I am “my own worst enemy” and even though many people around me say that I need to not be so hard on myself, I recognise that I really need to work on the “being kinder to myself” bit and the “explaining myself in a Spoonie context” bit. 🌸

the silent wave

(To be clear, when I write words like “I ‘have'” and “people ‘with'”, I’m not trying to advocate or emphasize a person-first viewpoint.  Truthfully, I’m very much a proponent of identity-first language; I simply title my posts the way I do (and occasionally use those phrases in the text of the post) to make this blog and its posts more search-engine-friendly, in order to reach–and hopefully help–more people, because they’ll likely use person-first search strings.  OK, with that said, moving forward…)

The last seven-plus months have been a complete game-changer for me (and at least a few others that I know of).  The learning curve has been steep at times, but all the neat positive and encouraging resources, authors, blogs, social media accounts, social media groups, and internet forums out there have all lubricated the uphill climb for me, making for a much easier ascent through the learning process.

The…

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My White Whale – The Interview (Take 2)

Or: How Moby Dicked Me Over Again

[clever alternate title courtesy of Paul 😉]

[For context, see My White Whale – The Interview] 

UGH.  I feel like I’m teetering on the edge of a massive meltdown and am desperately trying to hold myself together.  This week I have been contending with a cold, an interview (detailed below), discovering an attempted break-in to our house (looked like an opportunist and thank goodness they didn’t succeed, but dealing with the police and home insurance has been cognitively demanding), and feeling a growing sense of dread over the American Presidential election next week (I can’t even go there right now… either outcome fills me with dread, but obviously one outcome would be far worse than the other).

We came back from our holiday the other week with me having a little bit of a scratchy throat.  Participating in an outdoor choir performance the next day probably didn’t help things and I now have my standard autumnal viral infection/”cold” and persistent cough.  Greaaaat.

On Monday, I had an interview with my local Local Authority for a position with the SEN Casework Team.  As I now have my official diagnosis, I was able to confidently ask for the reasonable adjustment of having the written questions available to me in the interview (n.b. not asking for them beforehand) and I thought that surely I would be able to approach this interview in the best position possible – I’m interviewing for a job I’m doing every day anyway, and I don’t have to solely rely on my auditory processing skills to be able to fully answer the questions – WHAT COULD GO WRONG?

Lots, apparently.

This service had recently undergone a massive restructuring so there were 5 posts advertised – 3 permanent, 2 fixed term – and two of the three permanent posts would have been great for me.  Despite being kept waiting in the lobby for 45 minutes beyond my scheduled interview time without so much as a “We’re very sorry but we’re running late,” and apologising to the interview panel for still being a bit poorly, I thought I actually did a really good interview.  I was rattling off things relating to the Code of Practice and Education Health & Care Plans and I thought my scenario examples were quite good and gave sufficient evidence of what (I thought) they were asking for in the questions.

They had three full days of interviews (I was advised that they received over 60 applications for these posts) and two days to make decisions and callbacks were made today.  I was told that I scored highly on the knowledge side of things (in terms of understanding the Code of Practice and technicalities of the position), but that I did not score as highly in giving examples of managing difficult scenarios – not that I scored low, but that other candidates scored higher.  With so many qualified applicants, the odds were stacked.

I’m quite disappointed (for obvious reasons) because I really thought I did the best interview possible, but I guess my ability to understand what the interviewers are looking for is still a hindrance (yay for my Aspie brain).  I expressed my disappointment and said that I am very keen to work for this Council again, and she said that it certainly wasn’t a poor interview, but that there were just so many very qualified and able candidates.  What was quite encouraging was that she said to try again if another job was advertised.

However, I am really in the best situation because I had nothing to lose with applying for this job: I have my current job and I have super-supportive colleagues and senior staff around me.  I really cannot say enough about how wonderful they really are; we have a laugh/cry/rant together, we look after each other, and they understand me.  I am not actively trying to leave, but I had to take the punt with this authority as it is closer to home and I’m getting bored of commuting 40-ish minutes each way every day (except when I’m working from home, which can be once or twice a week).

Obviously, it’s not a case that I expected to be given the job because I disclosed that I am autistic; if anything, I still feel like even with the reasonable adjustment of having the questions printed for reference in the interview itself, that still doesn’t change the fact that the questions are quite ambiguous and what I think may be relevant may not be what the interviewers are looking for – it’s that whole Theory of Mind thing again.  I find it hard to anticipate what exactly they want me to respond with.  Do questions have to be ambiguous (even for neurotypicals) because anything else would give the answer away in an inadvertant way and not end up having the “weeding out” effect that interviewing is designed to have?  I feel like there is still a lot that is not understood about autism presentation in adults, especially those who want to work, which is the focus of the current campaign that the National Autistic Society is running about closing the autism employment gap [sign the petition by clicking the link].

I realise that I am in the 16% minority of autistic people in employment; however, I have had brief periods of unemployment a few years ago when a job I had gone for turned out to not be what I was expecting at all and I ended up being fired from it after two and a half months.  I had never felt like such a complete and utter failure before and I hope to never feel that way again.  It was a very bleak and depressing time for me.

When a new job did not come up within the next few weeks, I finally applied for Job Seekers Allowance – my first time ever on any sort of benefit – and when I tried to get it backdated to when I lost my job in the first place, they rejected it and said, “You should have applied straight away.”  How is someone who has never been unemployed or on any benefits supposed to know that implicitly?  When I left that awful job, they didn’t give me any sort of information as to what to do next!  Even thinking about it now brings up awful memories of the deeply rejecting feelings I had.

I still have to indicate on any CV or job application the periods of time I had unemployed (after losing that job and when short-term temporary contracts ended), and while those were in 2012/2013 and I’ve been continuously employed since Sept 2013, I still have to answer to those employment gaps, which would be minor in comparison to others on the Autism Spectrum, I’m sure. In this way, I’m grateful for my diagnosis now so that I can put my past employment experiences into a context of my undiagnosed Autism and hopefully this will help me move forward with future job applications.

We don’t want to sit at home doing nothing; we know that we have a lot to contribute to a job.  We just need to be given reasonable adjustments to show what we can do.

As with every application rejection, I will eventually get over it… but that doesn’t mean that it doesn’t hurt right now. 🌸

‘How can you not hear that??’ communicating sensory difficulties

I have always had sensory sensitivities but never knew that was what they were called; I always felt like others thought I was just being dramatic, so I rarely said anything. It’s nice, in a way, to have these sensory differences acknowledged. 🌸

YennPurkis

I’m not sure if this is the case for anyone else but the older I get, the worse my sensory sensitivities are. I used to be able to eat almost anything and it all tasted good and had a texture which didn’t revolt me. Now I am anxious about going to restaurants in case they have nothing I can happily eat.  I eat exactly the same dish every night unless I get take away, in which case I usually order the same dish! (Except for pizza. I think it’s pretty hard to make pizza horrible). To the horror of my vegetarian, vegan and health conscious friends, the things I am able to eat mostly come from the meat group or the sugar group! I am only 42 so worry that if I get old I might only have one thing I can eat!

I also have an increasingly heightened sense…

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Migraines.

I’m fed up of getting migraines.

First, I’ll apologise that it’s been quite quiet on Facebook, Twitter and here.  In the lead up to Paul and I going away for a four-night break, trying to get life sorted was proving to take a bit more energy than usual.  I don’t like sharing articles on Facebook unless I’ve actually gotten to read it first (and make sure it’s not just click bait) and I’ve just not had the mental energy to process whatever I’d be reading.

Since we came back from our little holiday, not only am I contending with my period kicking in a couple of days late (no scares, though – no little cherry blossom buds anytime soon! 😉), but it seems like my migraines are starting to become a bit more frequent again, which troubles me.

I’m not stupid enough to Google every time I have a headache because WebMD has predicted my demise no fewer than a dozen times.  However, I heard on the radio the other evening of a woman was left with severe brain damage after medics at the hospital did not correctly diagnose her severe headaches as being the result of a devastating brain infection; this happened in 2009, but it was in local news because a financial settlement was reached due to the negligence in her case.  Things like this terrify me.  It’s not like I’m a hypochondriac or anything, but I can’t help but think whenever I get one of these migraines seemingly out of nowhere – “is this how I die?”

I’m grateful that I am able to get Imigran (sumatriptan) through my NHS prescriptions, as it is quite expensive to buy over the counter (or from behind the counter, as a pharmacist would have to agree to sell it – it’s not like ibuprofen!).  However, I’m becoming concerned with how many I’m having to take in order to kick a migraine fully.

When I started taking Imigran (after codeine and some other anti-inflammatory didn’t work), one 50mg tablet got rid of it within an hour.  Brilliant!  To get my life back within an hour when before I could be laid out in bed for a day and a half was amazing.  As time went on though, one 50mg tablet would get rid of it within an hour… but it would sneak back after about 24 hours.  Another tablet and then it would seem to “take the hint” and would jog on.  Then it was one 50mg tablet… then another 24 hours later… then another 24 hours later.  So I read up if it was safe to take more than one (which it was, for me).  So when a migraine kicked in, I’d take two 50mg tablets… within the hour, it was gone and wouldn’t come back! Brilliant!  So a couple of months ago, after tracking this for a few months, I asked my GP if my dosage could be increased to 100mg.  She was reluctant to do this but instead increased the number of tablets I would get whenever I received my prescriptions (up from 12 to 18).

Fast forward to Sunday just gone.  Period kicked in three days late and with a vengeance.  Dull all-over headache, not sure if it was a migraine as I wasn’t too sensitive to movement or smells, though a bit sensitive to bright light.  Took 2 ibuprofen, but this did nothing whatsoever.  Tried going to bed at just gone 10pm… couldn’t fall asleep.  Took one 50mg tablet and went back to bed… must have worked a treat because I next woke up when I was supposed to, though after I got out of the shower and got dressed for work, the “fuzziness” was coming back, so I took one more 50mg tablet and went to work.  By the time I made it to the office, all was good in the world again (as good as it could be for a Monday morning), so I cracked on with my first day back from leave – 128 emails to sort through? Okaaaay…

By the time I headed home, the heavy headed fuzziness was coming back again.  I persevered for the rest of the evening, hoping it was just the stress of the first day back causing it and that having a quiet evening in would help, but it wasn’t relenting at all.  Again, it wasn’t restricting me from doing anything, it was just making me feel really tired and not keen to do anything.  At bedtime, I took two and hoped that this would sort it out once and for all.

Tuesday morning, I woke up feeling great again.  Business as usual, no big deal.  Just after lunchtime, someone came to work in the touchpoint room where my desk now lives (see Reasonable Adjustments) who STANK of cigarettes.  The room was quite warm too, which was making it worse.  My throat was becoming more hoarse as the afternoon went on and it was becoming intolerable (not sure if I’ve ever mentioned before, but I am asthmatic too); the headache was also creeping back.  I ended up leaving a bit early because I just needed to get out of this man’s proximity.  I went to join the motorway and saw standstill traffic (most likely a collision), so had to quickly loop round the junction’s roundabout and re-route myself.  I had brought my gym stuff with me to go have a little workout before Pilates last night, but with the rural re-route adding nearly 20 minutes to my drive, I was feeling so drained.  I had to pick Paul up on my way home too and he could see from my face that I was just in need of going home and staying there, so we didn’t go work out and we didn’t go to Pilates either, which really bummed me out.  The headache lingered all evening and would not bugger off.  Determined to not take another Imigran, I took 4 ibuprofen instead a couple of hours before going to bed, and by the time we got upstairs to go to bed and it hadn’t kicked in, I knew that I was likely going to need to take more in the morning.  To help me sleep in the meantime, as I feel a cold creeping in, I took a dose of NightNurse and had a quite peaceful night’s sleep (though some baked-out dreams!).

That brings us to this morning.  The headache was still there.  It’s not typical (at least not for me) to keep coming back like this.  Again, I took two 50mg tablets before going to work, and so far, so good (thankfully Mr Smoker has not set up shop in the touchpoint again today!).  I’m really worried though that if I wake up with the headache again tomorrow, should I be ringing the GP?  NHS 111 helpline?

I hope that it has just been a bad combination of overlapping triggers – hormones, stress, environmental aggravation – and is not foreboding to something more sinister.

I’ve not looked into the incidence of migraines among Aspies and wonder if any research has been done on the subject… another search for another day, methinks.

Please comment below if you suffer from migraines and if there are any particular remedies which work for you, or if you have any insight into what I’ve described in this long rambling post! 😊 🌸

Interview with Samantha Craft of Everyday Aspie

When Samantha Craft of Everyday Aspie posted on her Facebook page about doing a “blog tour” of interviews with other bloggers, I had to reach out!  She may be best known for doing the unofficial but widely shared list of Ten Asperger’s Traits (Women, Females, Girls) – one of the first lists I came across during my preliminary investigations into my own Aspie-ness.  I am grateful for her time in completing my interview questions and I hope you enjoy getting to know more about her! 😊🌸

Firstly, thank you for your time and welcome to …i am my own experience… and this “stop” on your blog tour!

Thank you for taking the time to interview me.  I love the name “Cherry Blossom Tree.”  I have a beautiful aged cherry blossom tree right out my dining room window.

I’ve really enjoyed reading your book, Everyday Aspergers [Amazon UK eBook], and understand that it took ten years to compile and get published – a big achievement indeed!  What brought you to writing a blog in the first place?

Yes. I am quite relieved the process is over.  It still feels a bit unbelievable.  Thank you for taking the time to read the book.  I appreciate that.  I began blogging in my mid-forties because I was confused by my own diagnosis in regard to what Asperger’s meant to me and how it related to who I already was.  I also continued writing because of an experience I had at a university I was attending, in which I was shamed for mentioning I had Asperger’s Syndrome.  I was motivated to keep writing to show others they weren’t alone and to spread the word about autism, particularly autistic women and late-age diagnosis.  But mostly, it was a place for me to process my own thoughts.

Can you tell me about what has helped you in blogging?

Hmmm.  That question can be taken a few different ways.  What helped me to blog was all of the thoughts and ideas I had in my head.  Getting the diagnosis triggered this whole self-analysis, and that in turn triggered my need to express myself through writing.  I’d say the angst inside was a primary motivator, that and the initial support (and later ongoing support) that I received from other bloggers, and later on fellow Asperians

How would you describe your blogging style?

At first I largely entertained.  I thought I had to produce something of value to keep anyone interested.  There is a lot of humour in my writings during the first year on my blog Everyday Asperger’s.  Later, I started to write from the heart, to purge my soul, so to speak.  I would simply sit at the computer and listen to myself tell me what to write.  It was similar to taking dictation.  I just wrote what I heard… my fingers typed.  It was a very healing process and very therapeutic.  I rarely set out to write on a specific subject or topic, and let what was in me rise up and spill out onto the pages.  Most of my time went to editing, sometimes a few hours, because of my dyslexia and dysgraphia and the way I process language.  The content itself flowed out quite naturally, and sometimes too fast for my fingers to keep up!

Was there a particular author/writer who inspired you to write?

No.  I did run into AlienHippy at the start.  She has a wonderful Christian-based blog on her experience as an adult Asperian.  If anyone motivated me to continue on, it was her, and a few others; not because of their writing, but because of their kind spirits.

Can you briefly explain for my readers about when you first wondered if/realised that you might be on the Autism Spectrum?

I first seriously considered I might be on the spectrum after I had been taking my middle son to therapy.  As part of the requirement for the master’s degree program in counselling I had started, I had to visit a mental health therapist.  She happened to be my son’s therapist, and I asked her if she suspected I might have ASD, and she was most definitely sure I did.  From there, I sought out an official diagnosis.

How has writing your blog helped you during your diagnostic journey? Has it been a hindrance at all?

The only hindrance happened when one person was offended by something I did/said on Facebook, which I cannot remember at this point, nor can I remember the person’s name.  (That’s one of the benefits of dyslexia, face-blindness, and short-term memory issues – I don’t often remember people who, at one point or another, caused me strife).  I was deeply vulnerable the first year or so after I was diagnosed and took people’s opinions to heart.  I have sensed grown a lot and have tons of strength.  But back then, I almost stopped blogging based on judgments and assumptions a person was not only saying about me but spreading on Facebook.  I actually wrote a post about the entire experience, not referencing the person or supplying clues about the person.  I didn’t wish any retaliation to come that person’s way.  I was deeply hurt.  But overall, astonishingly, with well over 1 million hits on that blog, that was the only incident!  I certainly didn’t think when I started I would be blogging over four years, that’s for sure.

When did you get the idea for My Spectrum Suite? How long did it take for it to become what you hoped for it to be?

When I was about to publish my book, I wanted to form a company to represent the book, beyond the publisher.  I wanted a place to display activities associated with Asperger’s, speaking engagements, and share about some of the awesome people I met on the spectrum.  I created Spectrum Suite to showcase Aspergians’ gifts in art and literature.  I also have a great resource page their of other ASD professionals and artists.

How has becoming a known name in the online Autism/Asperger’s community been for you? What (if anything) would you change about it?

It doesn’t feel real most of the time.  When I went to the FABULOUS ANCA Worldwide Autism Festival event in Vancouver, Canada in early October this year, I walked into a formal award event and the sweetest lady (animation artist), Liz, turned around and said, “Are you Samantha Craft?  You are my idol.  I’ve been following you for years.”  Then the lady behind me, another nominee up for Community Mentor, tapped me on the shoulder and whispered with a smile, “I follow your blog, too.”  Turns out most of the women from the US at ANCA knew of me or my blog.  That felt strange.

I don’t often feel emotions about what I’ve accomplished.  I know logically I have accomplished something but don’t feel any sense of pride.  The process felt necessary and natural to me — to process, to share, to give, to connect, to write.  It wasn’t something I set out to do; meaning, I didn’t set out for people to know me.  When I do feel a sense of accomplishment is when I am able to connect one autistic to the others I know and form new friendships and companionships for individuals.  I am most happy about that.  I cry about that.  The rest doesn’t seem significant, even though perhaps it ought to.  Kind of like if you brushed your teeth and got thanked for it.  I was doing something I felt I not only needed to do, but had to do.  It was my calling and soul’s purpose.  And I benefited from the experience internally, just as much as anyone else, if not more.

I’m quite excited to be part of the International Aspergirl® Society with you! As it’s still quite new, what do you hope for the future with this Society and for Aspie women and girls?

That’s great you are a member.  With all I’m doing, you need to nudge me and remind me to pop on in.  Rudy has some great videos listed there.  I hope that her vision for the society is reached and that more and more women find a voice, connection, and a way to use their gifts.  I think organizations like Rudy’s can go along way in providing opportunity, education, awareness, and a safe place for autistics.

If you had the chance to speak to your younger self, what advice would you give her?

I actually wrote a letter to my younger self twice in the book.  One about letting her know everything is going to be okay and one about puberty and boys.  Those are the things I’d still tell her.  I’d let her know that despite what she thinks she is brilliant, loving, pretty, and going to be safe one day.

To conclude, what would be five random facts about you that no one would ever guess? [these don’t need to be too personal, but just a bit fun!]

Oh, that’s a great question!  Let’s see.  Most people know so much about me! I like to joke I am a literal open book now . . . hmmm . . Off the top of my head:

  1. My uncle dated Patty Hearst. (I love to share that one for some reason)
  2. I am very self-conscious of my upper arms, and have been since I was in my 20s.
  3. I get mad at myself, if I think anything judgmental about anyone.
  4. I don’t know if I ever want to write another book, after the long process to write the first.
  5. I love my toes. They are really cute.

Thank you for this wonderful interview. Thank YOU for your lovely responses!

Please be sure to check out Samantha Craft’s pages across the Internet!

Debunking “Everyone is a little autistic.”

I know several people who have said, “Everyone is a little autistic” in one way, shape or form.  Hell, even before I was self-aware of my own autism, I hold my hands up and say that I thought this too.  I’m writing about it now because it’s recently come up in a conversation with a well-intentioned friend and despite my attempt at a tactful way of saying, “Actually, no…” I don’t think this person quite understood and it’s been bugging me a bit for the past few days.  Because I am a non-confrontational person, I didn’t escalate it any further because I was off-guard and didn’t quite know how to appropriately argue the point.

In the video Things not to say to an autistic person posted by BBC Three (which I have recently re-shared on social media), the panel of autistic people give their thoughts on this statement (ellipses denote going to another panel member’s thoughts/opinion):

“So we’re taught in school we’ve got five senses. Wrong – we’ve got six. The sixth one being our Theory of Mind, the ability to understand everybody else’s thought processes… You don’t have that instinctive understanding… and we rely on people’s body language and they lie with their body language, and that just makes me angry… So if you have the ability to do that, please don’t ever say you could be a little bit autistic, because it really is… Yeah, just don’t, just stop.”

I have managed to mask my lack of Theory of Mind quite well.  With hindsight, I think I ended up studying Psychology and Social Work because I wanted to understand how people thought and why people behaved the way they do.  Because I had the personality traits of a typical first-born in being a “people-pleaser” and learning from observing and trial-and-error, I learned a set of social skills to be able to appear to anticipate the needs of others based on what I thought I would need in the same situation.  In my email correspondence with Katherine Green after my first two appointments, she read the longest version of my questionnaire responses (because I sent the very long version, an abridged version and a mid-sized one restoring some of the more significant details I had taken out because I felt the abridged one was then too short) and noted that I wrote in everything that I thought was relevant, not really having awareness of what details were more important and which ones were not.  Even with this pointed out to me, looking back through what I sent, I still couldn’t unpick how I could have made it more relevant… This probably extends to my difficulties with job interviews because I know what I think is important, but I don’t know and can’t easily anticipate what it is that the interviewer is looking for in my responses.

I believe that when people say “everyone is a little autistic”, they’re trying to say that we all have certain levels of quirkiness and find certain things easier or more difficult than others, but ultimately, that’s just being human.  It then makes those who are autistic feel dismissed and their autism not being that big of a deal.  I came across a post on this topic by another blogger and thought these few sentences illustrate it much better than I feel like I am at this precise moment:

The only way I know to communicate how dismissive it is to say something like “we are all a little autistic” is to shift the whole idea into the context of some other disabilities:

“Sometimes I am looking for something and it’s right in front of me and I just kept missing it even when I was looking right at it. We’re all a little Blind, aren’t we?”

…When you use someone else’s disability as an adjective for your quirks or otherwise reduce it to a one-dimensional descriptor, you are making light of their entire life. And when you say everyone is a little bit autistic, you are trivializing what it actually means to be Autistic. ~ Unstrange Mind

So, while I recognise that I’m still coming to grips with this new aspect of my personal identity, this is one subject that I felt needed addressing separately.  For more on this, please do check out Unstrange Mind’s post (link above in quote box) because they explain it far more articulately than I can.

Invigorated!!

Funny how much difference a few days (and an undoubtedly life-changing diagnosis) can make to one’s humdrum life.

Last night, I spent more time sorting out this blog and my new Facebook page in one sitting than probably the last two months combined. I didn’t get to bed until after Paul got home from his gig, despite me saying to him that I’d likely be zonked out asleep before he got home… So imagine his surprise to see me still awake at 01:30!!

And even during the night, I was having all sorts of happy dreams about making positive connections within this community with women who I’ve silently been admiring from the sidelines, too scared to reach out to until I had my official diagnosis (for fear of rejection – see my last blog here). And I woke up feeling happy for the first time in a very, very long time. I can’t remember the last time I woke up feeling this unburdened… I am starting to think I’ve never felt this way before (without trying to sound too full of myself).  You can certainly expect more writing from me now that I have emerged from this dark cloud of uncertainty and am now standing in the glorious sunshine of confirmation and validation.

And even looking through my news feed on Facebook (as I was waiting for Paul to awaken), I came across an amazing blog post written earlier today that I could have written myself verbatim, even down to the “growing up in a very small country town” and using the phrase I have been using for the past year and a bit – “this is my truth”. I feel overjoyed to connect with these like-minded Aspie women… I feel like I belong.

This is my truth, my perspective. My life. Your story might be completely different and that is okay! We are all different with the same Autistic core. I’m sure I will have days where I hate my Autism, I will fall back into the trap of being miserable about my past I cannot change – this is realistic. Today, however, I’m simply just glad I know now.

Source: The power of diagnosis as an adult.

1 year, 1 month and 24 days later…

…I walk into the clinic’s group room with my dad, my husband and meet the psychiatrist and the speech & language therapist (from my first two appointments).  The time is 10:00am.  We break the ice talking about tea before getting down to business.  We talk… a lot.  I cry… a fair bit.  My dad speaks… I speak… Paul doesn’t say too much, but what he says is helpful and relevant.  Hours pass.  Around 13:30 (at an estimate, because I wasn’t actively looking at my watch), the psychiatrist said that she was still unsure about me.  She felt that we had to address “the elephant in the room” before proceeding with the discussion about whether I am autistic or not – the underlying and apparent feelings of rejection I possess which run very deep.

The rejection primarily stems from my mother, which really is unsurprising; it’s just that I’ve just not had it reflected back to me in that way before.  I could sense the shift in her attention from the age of four and a half when my brother was born.  I could sense that she didn’t want me “in the way” when my brother was having his speech therapy sessions (with her best friend) and his occupational therapy sessions (because he had balance & coordination difficulties).  I could sense her pushing me away after I reconciled with my dad because I didn’t tell her straight away in case we fell out again (despite it being none of her business) because she thought we were conspiring against her somehow (ridiculous, I know).  I knew she had “wiped her hands clean of me” on 13th July 2008 when the last phone call I had with her concluded with her saying, “Have a nice life” before hanging up the phone to me indefinitely (still haven’t spoken with her since).

The second stem of rejection came around the end of high school.  I don’t think I could cope with the prospect of my school routine being thrown completely into turmoil by graduating and going to university.  I think I felt like my circle of friends were more ready to move on than I was.  I am obviously looking back on events that occurred over 14 years ago, so I can only guess what I was actually feeling at the time because a) I can’t completely remember and b) I don’t think I even knew at that time.  In order to feel some semblance of control, I felt like I needed to distance myself from my friends, completely cutting myself off from them.  I did not attend anyone’s graduation party and I did not have one of my own.  When my friends came round to try to talk to me to find out what was wrong, I refused to go out and speak to them.  I didn’t know what to say or how to face them.  I was hurting, I was embarrassed, I was confused.  I wanted to apologise but I didn’t know how or what to say.

The third stem of rejection was losing my job just after returning from our honeymoon.  In brief, I interviewed for a career enhancing position with an independent fostering agency after I had about three years of experience as a Local Authority social worker.  They briefly threw the word “recruitment” (of new foster carers) into the interview, and because I wanted the job, I said that I’d be open to learning about how to do it.  After I started, it became apparent that despite my job title officially being “Supervising Social Worker” my actual role was to go out and recruit my own caseload of new foster carers.  For someone without additional (and at the time unknown) difficulties, this would seem a steep request.  Counting from the day I started (1st December 2011) to the day they fired me (15th February 2012), a week and a half after I returned from getting married and having our honeymoon (15 working days off), I had actually worked for them for 36 actual days.  How in the hell was I supposed to recruit ten new sets of foster carers in 36 working days where the Christmas period was smack in the middle of it all??  I think it boiled down to a personality conflict with my line manager, who was on one day nice as anything, and the next day could be extremely unapproachable.  I didn’t like her approach and she didn’t give me any sort of actual support in doing the recruitment, even after I asked for help because she expected me to “use my initiative” but that’s very hard to do when you don’t even know where to start.  I’d spend 8 hours sat behind a table with leaflets on it and a pull-out standing poster behind me in a supermarket foyer, hoping somebody would come and talk to me (as I could not badger customers coming in or going out of the store).  It was hell.  It was demeaning.  It was embarrassing.  I’m glad I didn’t end up being there very long, but I’m painfully embarrassed to the pit of my stomach about being fired from there.  I had never failed at anything so severely before in my life and I wanted to die.  I was miserable for weeks and struggled to find long-term work after that.  After several short stint jobs (teaching assistant, outreach worker, SEN Casework Officer for three months), I finally landed the fixed-term contract with the authority just south of where I live and was there for ten months before landing the post I’ve been in for two years (as of the 1st of August).  I don’t talk about this period of my life much because it caused me so much turmoil and grief.  Not long after losing that job, Paul and I were faced with having to move out of the annexe and move into the house Paul grew up in, with his mother.  The plan had always been for this house to eventually become ours, but we were newly married, I was newly unemployed and had been faced with the biggest rejection I had personally felt in my young adult life.  While one could argue that the rejection from my mother would be more hurtful, she had been gradually rejecting me throughout my life, whereas the job rejection was far more personal and felt much more traumatic.  I think this experience has also reinforced my feelings of being unable to work at a higher level where I’d be managing people… I could not bear the responsibility of causing anyone else that kind of pain.

The psychiatrist said she would not be doing her job properly if she did not address this with me, which I understood and thanked her for because this will ultimately help me be more mindful and recognise things more readily when I find myself feeling down.  Thankfully, she explained how she didn’t think the rejection exclusively explained all my other difficulties.  The other element that stumped them was my ability to read and anticipate from others’ facial expressions, body language, and vocal tones.  I explained that I did train in graduate school to be a social worker who did counselling, as well as studying psychology in undergrad, so it’s hard to say if this is a natural ability or if I have just learned and retained this because of my level of intelligence.

They both said that having read through my information (the many, many pages of it) and speaking with me, there were definite moments where they felt it was clear that I was autistic, but then I’d do something unexpected and sway them back to thinking I wasn’t.  They explained how they have seen many women over time, some blatantly obvious and others who have learned how to mask and cope so well, and that I’m probably at the highest functioning end that they’ve seen – they joked that they’ll need time in a dark room to recuperate from this diagnostic process!! – but that they felt that it would be beneficial for me and my mental health to have a diagnosis at this time, and that if in the future (whether it be the upcoming weeks, months or years) I chose to not disclose it to people or not recognise it in myself anymore, then that would be my choice.  However, I don’t think that is likely to happen, considering that since I had my “moment of clarity” at the Birmingham Autism Show on the 19th of July 2015, I’ve gone through 420 days (or 1 year, 1 month and 24 days) of wondering and seeking validation… and at 14:30 yesterday afternoon, I walked out of that clinic with a smile on my face and a feeling like a massive weight had been lifted off my shoulders.  I walked out into the sunshine with the diagnosis of autism that I had been hoping for.  I feel like while the journey to validation has come to an end, my new journey has just begun: to continue sharing my story, to continue sharing information, to continue adding more to the collective voice of women around the world with autism who may not yet know it or do know it and need help being believed.  We all know our own truths.  This is my truth… tell me yours.