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‚Äôt 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. ūüôā ūüĆł

Facebook Toxicity

This will not be a political post, but I will be making reference to the current political climate online, especially on Facebook.

I joined Facebook in November 2004 – one day after I turned 20. ¬†I am now 32, which means that I’ve spent just over 1/3 of my life on Facebook. ¬†This fact in and of itself depresses me to a certain degree. ¬†Of that time, 2/3 of it has been me living in the UK; I use this as an excuse for keeping it going, as it “keeps me connected” with friends in the US, as well as my cousins & aunt. ¬†However, I am finding myself feeling increasingly upset/frustrated by scrolling through my news feed.

The state of the world at present terrifies me. ¬†Being Aspie, I’m resistant to change at the best of times (even the supermarket rearranging their shelves and it taking me an extra minute to find what I’m looking for is enough to send me into a mini-tizzy) but the swing from the 44th to the 45th President of the United States is as polarised of a swing that we’ve experienced in a generation. ¬†Even though I’m living 3,500+ miles away from America, their level of power in the world arena is undeniable. ¬†I am deeply worried about the future of the world – its citizens and the environment.

Facebook in 2004 was very different from today. ¬†It was exclusively university students (needed a .edu email address to sign up!) and consisted primarily of frat party photos in varying degrees of fancy dress and “poking” wars with a crush. ¬†Today, it’s full of baby photos (first, second or even third babies now), wedding reception photos, and long diatribe rants about the latest political news. ¬†I am interested in others’ points of view and in learning more about what I may not understand, but the tone of people’s comments has been becoming increasingly vitriolic, especially from people that I “used to know” (i.e. went to high school together but haven’t communicated since before we graduated).

I don’t think anyone would deny that Aspies are highly sensitive individuals. ¬†We take on the emotions from those around us and can feel really drained when energy is running high. ¬†Because so many on my news feed are friends from America, I’ve been kept apprised of the political goings-on, especially during the bloodbath that was the 2016 election. ¬†Many of my friends shared articles from trusted journalistic outlets, but then I’d see there were over 20 comments on the post, most paragraphs-long, decrying “liberal bias”, “skewed facts”, and other scathing remarks. ¬†I opt not to jump in with the comment brigade for fear of being slammed down and hurled a plethora of insults – not because I’m a “special snowflake”, but because I don’t seek out recreational abuse from the trolling types. ¬†It’s bad enough seeing exchanges like this on friends’ posts – I can’t bear anymore to look at the thousands of comments on posts by public pages, where the real internet trolls feed and thrive.

It has been recommended to me to contact the counselling-by-telephone service Let’s Talk… I’ve used it several years ago, but I do not feel that their services would help me at present. ¬†I find that since becoming self-aware of my Aspie-ness and understanding how my mind works a bit better than before, I am able to unpick things myself and talk things through with likeminded friends (especially my fellow Aspergirl sisters – you know who you are ūüėė). ¬†I recognise that I’m burnt out at present – likely from being too strong for too long – and I need to retreat into my protective bubble to recuperate and regroup. ¬†Part of this will be actively self-limiting my use of Facebook, unfollowing those whose posts will likely cause me undue anguish, and outright unfriending those with whom I have no active connection anymore. ¬†I have seen articles over time talking about how people can become depressed by using Facebook, as we tend to self-censor (i.e. putting our best selves forward for others to see) and if we do it ourselves, of course others on our newsfeeds will be doing this, so we base our own lives on the filtered versions of others… no wonder we end up feeling inadequate and down. ¬†It takes a strong person to recognise this and pull themselves out of it.

I know I am a strong person so with my level of determination, I will be able to do it. ¬†I just cannot rush it. ¬†My lack of patience for waiting will interfere, but having several voices of reason around me will help keep me in check. ¬†This is going to sound cheesy and cliche, but seriously, since joining the International Aspergirl Society and becoming actively involved with members, finding the sisterhood has been so amazing. ¬†While we are all individuals with unique life experiences, there is a common thread that we all share which helps us (or at least this is true for me) feel less alone and isolated. ¬†I am so grateful and do not take it for granted whatsoever. ¬†This has helped keep me going over the last several weeks where I was feeling quite sad and alone. ¬†Now I feel like I can face what life throws at me because I am supported and loved. ūüĆł

My White Whale – The Interview (Take 2)

Or: How Moby Dicked Me Over Again

[clever alternate title courtesy of Paul ūüėČ]

[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 ‚Äď 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. ūüĆł

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! ūüėČ), 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! ūüė䬆ūüĆł

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! ūüėäūüĆł


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¬ģ 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 ‚Äúwe are all a little autistic‚ÄĚ is to shift the whole idea into the context of some other disabilities:

‚ÄúSometimes I am looking for something and it‚Äôs right in front of me and I just kept missing it even when I was looking right at it. We‚Äôre all a little Blind, aren‚Äôt we?‚ÄĚ

…When you use someone else‚Äôs 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.

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.

One Hurdle Overcome… One More Left?

Okay so I know I’ve been off the radar again for a little while, so thank you to those of you still hanging in here with me.

Since I last posted about the Autism Shows I attended, I’ve kinda gone into self-preservation mode… working in Special Educational Needs, the end of an academic year is always a trying and manic period of time with schools and parents rushing to get things sorted out for September and us caseworkers get caught in the crossfire. ¬†Whilst I was exceptionally pleased to have had places in special schools obtained for not one but two of my cases (when it was looking unlikely due to lack of spaces), I was finding that my sensory differences were getting the better of me in the office the more stressed and anxious I was feeling. ¬†I have been effectively wearing my sunglasses almost nonstop whilst in the office (only lifting them to the top of my head to speak to a colleague so I could focus better) as well as my iPod (because the noise created in an open-plan office is enough to drive me batty).

I emailed the Autism Assessment Team again on the 5th of July about what kind of time frame I was facing in relation to the Occupational Therapist referral, as I was starting to feel even more acutely anxious about everything.  I reiterated my sensory issues in the office and also wrote the following:

I am so sorely disappointed with everything to do with this diagnostic journey and I had certainly hoped that this would have been resolved already. I simply do not have the financial ability to pay for a private assessment and feel like I’m being treated as a hysterical woman that should not be reacting to things the way I am… ¬†I feel like I’m being punished because I have learned and adapted ‘so well’ over my life thus far because I had no choice but to do so; just because someone has learned to cope does not mean that they don’t experience difficulties at all.

I reiterate again that “the woman in the questionnaire” was the honest and true me… I am experiencing such levels of traumatic despair at the fact that I am not being believed and I do not feel like this is being taken into consideration. I don’t want to go to my GP, break down and get signed off work because all of this being too much for me to deal with, but I almost feel like I have no choice but to do this, even though it won’t make things any better on the work front because the work will still be there, along with everything else!!

I need to know:
a) that the referral to the Occupational Therapist has been made
b) that the appointment will allow full exploration of my sensory differences and strategies to mitigate the stress and anxiety that they cause me
c) what the time frame is for me to be seen because this particular unknown is unbearable

Speaking to my dad about this all, he believes me and agrees that I may very well be autistic and he was astonished that no one from the service contacted him to discuss his questionnaire. I was given the impression that there was nothing of significance in his questionnaire to highlight things that may point to a positive diagnosis; he explained to me that he spent a lot of time on his questionnaire and had fully expected someone to contact him in some way to discuss things further. As such, he will be attending the appointment on the 11th with me and my husband Paul.

Having been to the Autism Shows both in London and Birmingham a few weeks ago has further validated me and given me more fire to pursue this diagnosis. It is very apparent that the further away one lives from London, the harder it is for females to be diagnosed as autistic. If anything, it’s a shame that I attended my appointments prior to attending the Autism Show, because I have come away armed with far more information than I had previously and several well-respected professionals in the field agree that the diagnostic criteria used is based on the young male presentation of Autism and does not take gender variations into consideration, least of all the cultural differences with me being born and raised in America (because I speak perfectly understandable English, I think this element was not taken into consideration at all, as per my letter of the 13th of June).

My mental health should not be suffering as much as it is because of all of this.

Thankfully, I received a response from the OT (I’ll call her Emily) the next day (as I had sent my email outside of office hours). ¬†She said that she was fully booked until late September/early October, but asked if I would be happy to take up any cancellation appointments should they become available. ¬†She also briefly explained what the appointments would entail and that a written report would be provided afterwards.

I wrote back saying that I would be glad to take any cancellation appointments, but that just knowing that it would be late summer/early autumn was extremely helpful; it allowed me to “park” my anxiety so to speak, as there was no point in me staying angsty about it.

Fast forward to Monday the 25th July.  I received an email from Emily saying that a cancellation had come up on Wednesday the 27th July in the afternoon.  I responded straight away saying that I would accept the appointment.

Going back to the same clinic building where I had left so upset and (without wanting to sound too¬†dramatic) a bit traumatised, my anxiety was rapidly climbing upwards, despite me actually feeling relieved that I was finally on my way with the OT component of my diagnostic journey. ¬†I explained this when we got into the room and Emily suggested I try a few assistive items, including rolling balls with rounded-tip spikes on my thighs (where deep pressure receptors are high in concentration – it felt nice on my thighs but not on my hands), weighted lap pads (2kg each – which didn’t do much) and a weighted blanket (7kg – I really liked this one, despite the warm weather on the day). ¬†Emily advised that I only keep the weighted blanket on for about 15-20 minutes and that the effects should last for about an hour or two. ¬†We spoke for a bit, me answering open-ended questions about my sensory sensitivities and sensory-seeking tactics, and after what only seemed like a few minutes, Emily suggested that I take the blanket off… I was absolutely amazed at how calm I felt¬†because it happened completely subconsciously. ¬†When we finished the open-ended questions, we went on to the¬†Adult Sensory Profile questionnaire (Based on the intersection of two continua [neurological threshold and behavioral response/self-regulation], this model describes quadrants identified as Low Registration, Sensation Seeking, Sensory Sensitivity, and Sensation Avoiding), ranking my sensory experiences from 5% or less of the time, 25% of the time, 50% of the time, 75% of the time, or 95% or more of the time (there were word associations with each ranking that I can’t remember but the numbers helped me personally be able to rank myself with each question). ¬†When we were done with the questionnaire, we scheduled a follow-up appointment the next week to discuss the outcome of the questionnaire, how sensory processing works and strategies to help me moderate my sensory differences (because there’s no “cure” for it, just management, which I understood).

Fast forward again to Thursday the 4th August Рmy second appointment.  I was given the validation that I do experience some sensory differences which are made more apparent/acute depending on my mood (i.e. the more stressed I am, the more sensory sensitive/sensation avoidant I become), which made sense.  We talked through the report and strategies and how the body processes sensory information and where we ideally would like to be in a middle ground between agitated (extreme high end) and lethargic (extreme low end).  Emily also provided me with a list of suggestions for the workplace, because it was clearly identified that I was able to cope in office spaces before but that this particular office space (since we moved to it in October 2015) has been progressively having an impact on my mental well-being the more my sensory differences have been agitated.  I was grateful for the list of strategies/suggestions given and looked forward to discussing them with my manager the next day [side note: chatting about it with my manager was so positive; I sent her an email summary of our discussion which she is going to send to HR to see what can be done to help me out Рwill update when things happen!].  The suggestions for modulating my sensory differences were quite extensive, many of which I do to some degree already, and I will actively try to put these strategies to use and hopefully improve things for myself.

I left still preoccupied about my third appointment with the psychiatrist next week on the 11th with my Dad & Paul… she said that the appointment should help, regardless of the outcome. ¬†I said again how I’ve been waiting a very long time and in that time have constructed this identity around being an autistic woman, which felt shattered to pieces after the second appointment. ¬†Emily was sort of hinting at how a label of autism could sometimes be more detrimental than helpful and that I should think if it could be anything else…

One of the questions in the first appointment was if I had experienced any abuse in my life, which I flatly replied, “no.” ¬†When Emily asked again in the second appointment if I had experienced any sort of abuse or trauma, and I made the throwaway comment that my mother cutting me off eight years ago probably wasn’t great¬†and that through this process I’ve begun to wonder if she too is autistic… it was then that Emily said I should think if it could be anything else.

I had a 25-minute drive home ahead of me, and when I was sat in a queue of traffic trying to make it onto a main road near a very busy roundabout, a little gremlin popped out of a dark corner of my brain… something that had come up both when I was working as a social worker and in SEN…¬†attachment disorder can present with a lot of the same characteristics as autism. ¬†My heart sank. ¬†Could all of this be attachment issues?? ¬†Does my mother have attachment issues which permeated her parenting?? ¬†It became far too much to bear. ¬†I got home and was hardly able to speak. ¬†I handed Paul the report and the workplace suggestions and sat silently on the sofa with the TV off. ¬†Paul read the report and thought it all looked really positive, so was naturally confused as to why I seemed so out-of-sorts. ¬†When I briefly explained, he didn’t know what to say. ¬†I turned to my phone and sent a message to my fellow American expat Katherine (mentioned in¬†Birmingham Autism Show) because if anyone I knew would know anything about this, it would be her.

I have to leave it there for now… more very soon. xx

Birmingham Autism Show

Another helpful day of information gathering to bolster my case for diagnosis.

The sessions today were different from the ones I attended last week in London… well, with one exception.

I finally got to look at the artwork from Willard Wigan – seeing is believing!! ¬†Seeing all the photos in his slideshow last week were incredible, but to see the needle underneath the high-powered microscope on its own and then looking through to see it with your own eyes… it was amazing. ¬†I actually sat in on his talk again at the end of the day because I enjoyed it so much!!

The first session was Allies to the Neurodiversity Movement… the speaker was a transgender woman and while she had a lot to say and was very passionate about it, though I couldn’t help but notice several spelling and grammar errors in the PowerPoint presentation, which detracted from the full impact for me. ¬†She also made some quite controversial remarks (particularly one around the Holocaust which I don’t want to repeat) which made me feel a bit uncomfortable.

The next talk was by Dr. Glenys Jones, psychologist and researcher in the Autism Centre for Education & Research (ACER) at the University of Birmingham, talking about Autism Through the Lifespan.  Quite informative, highlighted again the difficulties of obtaining a diagnosis in adulthood, especially for women.

The next talk was the lovely woman I befriended at last year’s Autism Show in Birmingham, speaker and fellow expat Katherine Green (her own blog is at Wishing on Jupiter). ¬†The subject of her talk was Autistic Girls and Romantic Attachments – a subject I related to very well!! ūüôā ¬†I have always had a¬†quite intense attraction to boys with certain characteristics… one of them even married me. ūüėČ ¬†I always had a sense that my intense feelings were probably greater than other girls my age, but I always kept it quite private and didn’t go about talking incessantly about boys I thought were cute, even though I could very easily have¬†if given the opportunity.

After her talk, we went off to have a bite to eat and a catch-up for about 45 minutes, which was absolutely lovely.  Both of us were blown away by the result of the EU Referendum vote and chatted about that and other miscellaneous things.

The next talk was Women & Girls with Autism by Dr. Elisabeth Hurley from Autism West Midlands. ¬†It was quite interesting to hear that genetics may have an explanation as to why girls may not present as severely with Autism than males – because of the second X chromosome perhaps being ‘protective’ in some way. ¬†She also appeared to have full confidence in how sociability does not mean that a girl does not have Autism – all down to GENDER SOCIALISATION, a topic that I wrote about a fair amount when I was a graduate student. ¬†It always angered me how social standards were so high for girls… I never wished I was a boy, but I wished it was more balanced. ¬†She has edited a book called Ultraviolet Voices, comprised of personal stories from women on the spectrum, and co-wrote one called¬†The Good & Bad Science of Autism, both of which I’m looking forward to reading.

I ended up missing the BBC Neurodiversity Project talk as I ended up speaking with a woman who was listening in the previous session and heard my question about improving diagnostic processes for women, after briefly outlining the uphill struggle that I’m having. ¬†She had a few suggestions, all of which I have already exhausted, but we ended up chatting for so long that the entire session ran through! ¬†We both sat down together to hear Willow Holloway speak about The Autistic Women’s Empowerment Project, which was another positive session; however, she was having difficulties with her PowerPoint presentation, jumping ahead and back on slides several times which was quite distracting and made the talk hard to follow in places.

When that talk was done, I went back to the Autism Matters Theatre to hear Willard Wigan speak again. ūüôā

I think I will be doing the two shows again next year¬†because it was great to get to see so many different speakers and to learn so much about Autism and other people’s experiences, especially those of other women.

London Autism Show, Day 2

Amazing what ten hours of sleep can do to make you feel like a human again. ūüôā

It was a bit difficult getting to sleep last night because it sounded like there was a helicopter hovering for aaaages… whether it had to do with my hotel being adjacent to the London City Airport or not may remain a mystery, but it felt like it was hovering in the same vicinity for a long time (i.e. not flying away anywhere else any time soon).¬† Being in a king sized bed by myself is a rare treat, so I used the two spare pillows as cuddle pillows – one on each side of me so if I flipped over, there was one there waiting for me.¬† Lush. ūüôā

After a nice partial English breakfast (because I don’t think you can call it a “full English” if you don’t like beans, mushrooms, or grilled tomato!), I walked back to the ExCeL Centre rather than grabbing a bus from right outside the hotel; it was a lovely morning, crisp air without being too cold and a bit overcast enough that it wasn’t super sunny, but the sun was breaking through enough to make it just seem nice and peaceful.¬† There were loads of people running along the river behind the ExCeL Centre too… I don’t generally get the appeal of running, but when running along the river like that, I think I could kinda get it… still doesn’t mean I’m gonna take it up anytime soon! ūüėõ

Arrived just in time for ‘How learning impacts life: how cognitive learning in the early years affects education, transition and adult life’… if I’m honest, I was hoping for a bit more out of this one, with such a grandiose title like that.¬† Granted, it was only 20 minutes long, but I didn’t learn anything new; it was basically a rehash of many of the talks I’ve heard already.

The updates and initiatives round-up was interesting because Geoffrey Maddrell (OBE, Chairman of Research Autism) because he mentioned a shift in the direction of putting more research focus on its prevalence in females — YES!! It’s finally being recognised by those who can do something about it!!

I ended up missing the Brain in Hand talk because I went back to speak to Sarah Wild, the headteacher at Limpsfield Grange.¬† I had given her the link to this blog yesterday (if you’re reading this now, HI! :)) and it was nice to speak to her without being stupidly emotional like I was yesterday.¬† Honestly, she is possibly one of the nicest people I have ever had the privilege to meet and speak to at some length (and I’m not just saying that because she may be reading this blog!) and I wish I had a teacher like her that I could have gone and spoken to when I was feeling wobbly in high school especially.¬† Looking back on my high school years, there wasn’t really “that one teacher” who I could go to whenever I needed it.¬† Oh sure, there were teachers I could talk to, but not like this… it’s difficult to articulate right now.¬† If anything, I think my time chatting to her over the last couple of days helped make this experience all the more worthwhile.¬† She validated me more in probably a half hour (collectively) than the Speech & Language Therapist and Cognitive Psychologist I saw at the ASC Diagnostic Assessment Team.¬† I showed her my timetable of talks and my step-by-step directions that I drew up to get me to the ExCeL Centre on my own, and she asked if I had shown these in my assessment, which I said that I had.¬† She asked me, “did you need this to be able to get here today? Could you have gotten here without it?” and I said quite simply, “no.”¬† I need this level of planning and virtual rehearsal to be able to do anything remotely like this (if anything, this was the biggest single trek I’ve done on my own) otherwise, I would never get out of my town.¬† I don’t understand how this wasn’t taken into account in my appointments… but then again, I showed them briefly, but the need for these tools and strategies weren’t discussed any further… because clearly, my sociability overshadows all of this. {grrrrrrrumble}

The next talk I saw was the whole reason I came to London’s Autism Show in the first place: Lana Grant, author of From Here to Maternity, talking about pregnancy and motherhood from an autistic perspective.¬† WOW.¬† Simply WOW.¬† I’ll rewind a bit to give context – I saw that she was down to speak on the Saturday of the Birmingham Autism Show, and when I realised that my tattoo appointment had been booked for the same day, I was gutted.¬† So I looked at the programme for the London show and saw that she was listed as a speaker there too, so that was how I came to pushing myself to come all the way out to London on my own and do this – the motivation to see her speak for half an hour was motivation enough (and there were several other sessions about Autism & Females so it was going to be worthwhile altogether anyway).

I’ll be perfectly honest, and in an autism context it makes perfect sense, but I am terrified about having a baby.¬† Petrified.¬† I’m of an age where many of my peers are having their first, second or sometimes even third baby, and I feel like there is something wrong with me in that, while I am aware of the instinctual part of my brain which is saying, “C’mon girl, you’re not getting any younger here…” the ‘rational’/Aspie part of my brain is saying, “Are you serious? You and Paul have a good thing here, you have your routines, you have the cat, you have a glorious bed that you LOVE sleeping in because you LOVE SLEEP… are you seriously thinking of chucking that in so that you can have a tiny screaming, crying, pooping baby to keep you from doing anything for yourself ever again??”¬† I love being an ‘Auntie Cherry’ in that our friends’ or my cousin’s kids look to me and Paul as Auntie and Uncle and they love it when we come around and play with them while trying to maintain some sort of ‘normal’ adult conversation with their parents.¬† And people have said to me more than once that I’d make a great mother because my caring motherly instinct is very apparent (which heartens me, considering that my own mother clearly is missing out on that attribute) – hell, even in the dorms at University I was called “Mama”.¬† But what I try to hide from people are my strong sensory aversions to babyhood: dirty nappies, spit-up, snot, general stickiness (how do kids get so damn sticky!?!)… makes me either cringe or want to hurl.¬† This is why I wanted to see Lana speak: to tell me how she’s done it and managed it!!

Lana talked about how it is a time of massive transition and extra challenges.¬† She said that she has six children and was diagnosed with Asperger’s before her sixth was born, so she was able to take more ownership over what she experienced whilst armed with her diagnosis, challenging the “machine/production line of the medical field” moving from one step to the next to the next, powerless to influence anything in relation to one’s additional needs.¬† When looking into information about pregnancy and motherhood for women with autism, all she could find were bogus articles about what to do and not do during pregnancy to prevent autism, hence why she wrote her book about her experience [I’m SOOO buying that for my Kindle!!].¬† The prevailing element she spoke of was the lack of understanding and mindfulness from medical professionals and nothing being done to mitigate her massively high levels of anxiety.

Lana also spoke about social situations imposed upon pregnant women and new mothers – antenatal classes, mother & baby groups – and how she had been incorrectly diagnosed with postnatal depression, bipolar disorder, anxiety disorder; she didn’t feel depressed, but felt that she didn’t understand the same feeling that everyone else around her seemed to feel.¬† This all makes perfect sense to me and mirrors my exact feelings.¬† She also talked about the sensory processing and the overload that various experiences can bring along with it – smells, noise, lights, tactile experiences – all of which she was spot on with my own anxiety.¬† The final message was: “Pregnancy and motherhood has been the hardest but the most amazing thing [she has] ever done.”¬† I have sort of reconciled that Paul and I will most likely try for a baby in the not too distant future, but only when I’m feeling 100% ready, and I have come to terms that if we do get pregnant, we may just have one child.¬† I cannot foresee being able to cope with more than that at the present time, but perhaps in time our thoughts on the subject will change.¬† I asked her about the Facebook support group she started and asked if someone like myself (not yet diagnosed, not yet a mother but considering it) could join, and she said “Absolutely”, so I’ve requested to join that group.¬† I am so glad that this session was what I was expecting and more; it completely justifies the expensive weekend I’ve just had. ūüôā

Straight after that session, I went into the ‘From school humiliation to internationally acclaimed artist’ talk by Willard Wigan MBE, micro-sculptor with autism.¬† WOW.¬† His sculptures are small enough to fit in the eye of a needle – and the detail!! It’s unbelievable.¬† Check out his website (link above) to see some of his works.¬† Unfortunately, I had such a tight timetable that when I did have free time to look at the few samples of his work available, they were either occupied by other people (yesterday) or they were gone (today)!! I will have to make it a point to see them in Birmingham.¬† The images he used in his presentation were incredible, but I do feel like it’s a case of “you need to see it with your own eyes to believe it”!!¬† His talk was brilliant and funny; it really is amazing how he has turned around being told that he was stupid by his teachers to being commissioned by the Queen herself to make a replica of the Crown Jewels which fits on the head of a pin.¬† Simply staggering.

The next session Рthe top ten autism research questions Рwas interesting enough, but I was disappointed that autism & females did not appear within this top ten.  However, Autistica did appear to go through a lot to get the views of adults with autism, their families and clinicians to narrow it down.

Because I know you’re interested, the top ten questions are:
10. How should service delivery for autistic people be improved and adapted in order to meet their needs?
9. How can sensory processing in autism be better understood?
8. How can we encourage employers to apply person-centred interventions and support to help autistic people maximise their potential and performance in the workplace?
7. How can autism diagnostic criteria be made more relevant for the adult population?  And how do we ensure that autistic adults are appropriately diagnosed?
6. How can parents and family members be supported/educated to care for and better understand an autistic relative?
5. Which environments/supports are most appropriate in terms of achieving the best education/life/social skills outcomes in autistic people?
4. Which interventions reduce anxiety in autistic people?
3. What are the most effective ways to support/provide social care for autistic adults?
2. Which interventions are effective in the development of communication/language skills in autism?

and the number one question is….

1. Which interventions improve mental health or reduce mental health problems in autistic people?  How should mental health interventions be adapted for the needs of autistic people?

It will be interesting to see how these questions come to be answered in due course.

The next session was about managing Pathological Demand Avoidance (PDA) in the workplace; I’ll be honest, I think I was reaching a point of information saturation because I spent most of the session colouring in a cloth bag from Helsey Group [there is an image of a blank canvas on an easel with a girl stood to the left and a boy stood to the right; the bag had a small set of markers in it so one could draw what they wanted on the canvas]… I used the markers to make a pretty rainbow and a rainbow-coloured heart.¬† I also coloured in the boy and the girl to resemble Paul and I. #Don’tJudgeMe. ūüėõ¬† It was interesting to see what strengths PDA can provide: people skills (at least on a superficial level); taking leadership (often from a desire to be “in control”); adaptability (either to a situation or ‘playing’ a certain role); and team management (how to best use people’s skills effectively).

After that was a brief session by the Director of External Affairs and Social Change at the National Autistic Society, talking primarily about the reach of the Too Much Information campaign run in April [which I blogged about in Join the Thunderclap].  The NAS are going quite good work at spreading awareness and acceptance of autism in society Рnot just tolerance of it.

I will interject here with a side anecdote: The worst thing about these final two sessions was that a guy ended up sitting on a bench near me and he STUNK MASSIVELY of B.O.¬† Talk about an assault on my olfactory system – he was quite fidgety and EVERY TIME HE MOVED, I got another waft of his stank [not a typo].¬† I tried breathing through my mouth, but that didn’t feel natural, so I started chewing gum, hoping that the strong minty flavour would overpower my sense of smell.¬† I was quite disheartened when he didn’t leave for the final session… honest to goodness, how can someone not be aware that they smell that bad??¬† And how can people close to them not say anything?!?!¬† I just cannot understand it for the life of me.¬† I get self-conscious when I get any slight smell which might be coming off¬†of me… ugh. I just can’t.¬† Anyway………

The final session of the weekend was another one about autism & females, this time from the Director of Autism at the Priory Group.¬† Even more validation/vindication about my being convinced of my diagnosis, despite what I’ve been told thus far.¬† Girls are more passively avoidant than their male peers who can be more “in your face”.¬† 42% of girls with ASD are misdiagnosed with different disorders (e.g. personality disorders, mood disorders, depression, anxiety, OCD, even anorexia); this is a staggering figure – nearly half!!¬† Girls are more verbally communicative, less violent, more demand-avoidant over time, less rigid and over-focused (although I’d say I’m pretty rigid, but that might be more in relation to my sensory issues).¬† Clinicians need to look beyond the obvious for obsessive behaviour, problems with multi-processing, sensory issues, demand avoidance and those with a “real” friend.¬† Again, it was reiterated that there is a bias in diagnostic tools and protocols which are based on “extreme male” characteristics; shyness and oversensitivity are not included in the diagnostic criteria, the questions are not sensitive enough and do not take into account that girls imitate social skills better and that girls are praised for showing love, kindness and empathy (as it is suggested that girls on the spectrum are hyper-empathetic and feel too much as opposed to too little).

I stopped over again at the Limpsfield Grange stand to say goodbye and to say that I will keep things updated on my blog, and was kindly told that I can keep an eye out on the website and to keep in touch because I’m “part of the community and [I’m] not alone in this”.¬† That was so nice to hear. ūüôā

I camped out for about half an hour near an outlet to charge up my phone before setting off on my journey out of London, because I had taken loads of photos and notes so the battery just about died.¬† Then I had the fun experience of a bus replacement service for the DLR, as it was closed for planned maintenance.¬† I hate standing on public transport, but especially on a bus¬†because sudden stops which send you juddering forward are so disorienting and horrible.¬† Thankfully it wasn’t too terribly long to get from Custom House to Canning Town where I then took the Tube out to Victoria station and then caught the Oxford Tube coach out of London.¬† I hadn’t had anything proper for lunch (just a millionaire shortbread slice and a Coke) and I didn’t stop to pick anything up before getting the coach, as my motivation to get home was greater than that for quelling my hunger.

I had another sensory assault on the coach wherein the group of three women (who really were behaving like teenagers; I reckon they were near my age) were chatting away so loudly that I put my newly-acquired pair of ear defenders on over my earbud headphones (listening to the Manics, of course) which worked amazingly well to silence them so I wasn’t blasting my eardrums with my iPod.¬† I spent most of the coach journey typing this blog on my Kindle Fire with my little portable Bluetooth keyboard, which was an efficient use of time. ūüėȬ† Then suddenly I got a horrible smell in my nose which I soon realised was nail polish… and sure enough, despite the fact that the coach journey was quite bumpy (I had to keep sliding my Kindle back into place as it doesn’t attach to the keyboard), one of the women across the aisle from me was actually painting her nails – WHO DOES THAT ON A BUS?!?!?¬† I literally could not believe it.¬† I just glared at her and her friends and carried on working.¬† Thankfully she didn’t have it open for too long, but honestly, if I wasn’t so self-conscious (and not wanting to stand out even more because of my still-strong American accent) I would have said something along the lines of “I have strong sensory issues and the smell of that is really making me feel unwell; can you please put it away?” but I felt like my shy high school self again and saw the situation play out in my head with them being arsey like popular girls would be and just refuse and carry on.¬† She might have been perfectly nice and understanding about it, but I did not have the courage to find out.

I think this is probably the longest blog I’ve written.¬† If you’ve made it this far, congratulations for sticking with it, though there’s no prize for finishing it other than being able to go back to whatever productive thing you could otherwise be doing! ūüôā¬† I’m looking forward to the Birmingham Autism Show next Friday to see a few other talks which clashed with my timetable here, and most importantly I’m looking forward to actually seeing Willard Wigan’s work (nice alliteration, eh?)!! ūüėÄ

Take care, folks. xx