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. 🌸

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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.

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 – my 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 – will 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

London Autism Show, Day 2

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

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. 🙂

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! 😛

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. 🙂

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 – the top ten autism research questions – was 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. 😛  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 – not 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. 🙂

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. 😉  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! 🙂  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?)!! 😀

Take care, folks. xx

London Autism Show, Day 1

So, I woke up at 4:40 this morning to get dressed and drive to Oxford to get the coach to London and managed to navigate the Tube (after pre-planning it all, of course, with each Tube line identified, which direction of travel and which stops to get off at) and DLR (a first for me!) to get to the ExCeL Centre in east London.  It has been a long day, but I’m going to persevere and write up my thoughts now while they’re fresh in my mind.

Widgit Software presented about using symbols (i.e. Communicate In Print) and announced that the new version will be released in September.  Quite similar to Makaton symbols, but a bit more colourful and descriptive.  Then a short session about Dyscalculia and how children on the spectrum can struggle with understanding numbers and maths… I was hoping for insight as to why I was good at math in school but still to this day cannot do mental arithmetic to save my life.  I then jumped over to Michael Barton’s talk (author of It’s Raining Cats & Dogs and A Different Kettle of Fish) about surviving at school and succeeding at work.  I remember seeing him speak at last year’s show in Birmingham; his books are about literal interpretations of language and how confusing these phrases can be for people on the spectrum.  I’ll admit, a lot of these phrases I know because they have been explained to me (“wears her heart on her sleeve”, “laughed my head off” etc.) but the one phrase I always have to look up is “butter wouldn’t melt”… I literally only looked it up the other day and I still can’t remember what it means.

After that one, I was keen to see the Speaker of the House of Commons, Rt Hon John Bercow MP provide an exclusive personal perspective on being the father of an autistic son… but when I got into the Autism Matters Theatre, the next session’s slides were already on the screen… they appeared to have changed the timings without any notification, or he just wasn’t able to come… either way, that was disappointing.  I went to grab an early bite of lunch (as breakfast was at 5am) and then saw Tom Bowes speak (quite energetically!) about echolalia improving socialisation.

After a little break mixed with wandering around and having a little sit down and checking on my Sims (yes, I’ll admit now that The Sims FreePlay is my version of Minecraft – just yesterday I created a house to replicate the Morgendorffer family home from Daria – don’t judge me! 🙂 ), I then went to see a talk I was very much looking forward to – Autism and Girls, featuring the head teacher and students from Limpsfield Grange School.  The girls who spoke (two current students in Y8 & Y9 and a former student now in college) did so unbelievably well… I could see they were anxious speaking in front of such a large crowd, but they handled it beautifully.  It is so important for these girls to have a voice in the autism world because (as I’ve experienced first-hand) females have a harder time being taken seriously and need to feel valued and worthwhile.  This school was featured in an ITV documentary last year [I quoted a poem from one of the students shown on the programme in my post titled Disclosure… and relief.] and I could see myself in several of the students there… like, different aspects appearing in different girls at varying intensities.  Later on in the day, just before the show closed, I went up to the stall and spoke to the head teacher, congratulating her students on their job well done speaking in front of the audience today and thanking her for doing the documentary last year, explaining how it was broadcast not long after I had the realisation that Autism/Asperger’s seemed to make sense to explain why I’ve always felt awkward in myself my whole life and it supported me to request a diagnostic assessment.  She was so lovely to speak to – I was a bit tearful because ALL THE EMOTIONS (and I was a very tired girl after a very long day) and she said that there were a few lovely women who came up to speak to her with similar stories, so I can imagine this has been a monumental and rewarding day for her and for the school.  I wish there was provision local to where I live like Limpsfield Grange, because they do such great things for girls on the spectrum [and other needs too].

After that session was back to back sessions about autism equality in the workplace: removing barriers and challenging discrimination, which was quite interesting [I may write a separate blog from my notes on that one, which may help me at work].  Then was a session which was added late to the programme: Diagnosing Autism Spectrum Conditions in Adulthood, presented by a neurodevelopmental specialist from the South London and Maudsley NHS Foundation Trust.  Let’s just say that it stirred up a lot of the still-raw emotions from the last two weeks.

After that session ended I had a 20 minute break until my next session and I went to speak to this specialist at the booth… aaaaaaaand became overcome with emotion [this was actually a couple hours before the emotional breakdown described above… conclusion: I do not function well on little sleep… I was verrrrry apologetic for being in a state].  We went and spoke outside for a few minutes and she was so lovely.  I explained what happened between the two appointments and how I felt after and wrote to the assessors.  [Update for you guys because I didn’t have time to blog about it last night, but I’ve had an email back and they have offered me a third appointment which will be with a psychiatrist, recommending that I bring Paul with me… but it’s not until 11th August – 8 weeks from yesterday.  Not exactly great in terms of timescales, eh???? 😥 ]  I asked what my options were, and I was advised to perhaps speak to Advocacy For All (as they have an autism-specific team) and go for the third appointment.  If I still feel that I’ve not been given the fairest assessment, then I could request from my GP to be referred to their service, as it provides nationwide support (not exclusive to South London).  I was relieved to know that I still had options through the NHS, as I just cannot afford to go for a private assessment.  I reiterated that I only want a diagnosis for personal validation and to put me in a context for what I need to get by in the workplace – not for any untoward reasons (claiming benefits or anything).

After all that emotional deluge, I saw another talk about teaching autistic girls, this time from an autistic teacher – she was another adult woman with a diagnosis that, upon first seeing her speak, you would not have assumed she was on the spectrum.  This, if anything, just reinforces my strong feeling that my assessors got it wrong and didn’t fully take the female element into consideration!!  The final session I attended was called ‘Turning the Triad on its head’, but to be honest it just repeated a lot of the same things I’d heard during all of the sessions (focusing on strengths, not defining by difficulties, etc.).

The recurring theme throughout the day was: if you meet one person on the spectrum, you have met one person on the spectrum; no two people are the same!!

It’s now 9pm and I’m completely zonked.  I had a lovely pizza for dinner at a little Italian wine bar while reading Harry Potter and the Prisoner of Azkaban on my Kindle (not my first time reading it) while it rained as I didn’t fancy a 20 minute walk to the hotel in the rain.  Checked into my hotel room, had a shower, and started writing this!  Now that my thoughts are well and truly decanted, I’m gonna climb into bed and hopefully fall asleep before 10pm. Day 2 tomorrow, and I will follow up with a similar analysis. 😉

First appointment down…

So, with all the last-minute nature of things, I was quite anxious Friday morning and went in with my stomach in knots.  I was welcomed in by the lady I’d been emailing and speaking to on the phone.  She handed me a clipboard with a brief sensory questionnaire which I completed quite quickly.  Just as I finished, another woman came in (I assume another client) and sat down diagonally opposite me.  The therapist  who ultimately was going to be assessing me came into the room and addressed the other woman first (before me) and they started talking about going running etc. which I just tuned out to, mildly annoyed when she finally looked over to me and said, “Ready whenever you are.”  and I said, “well, if you’re ready to go then…”  I didn’t mean to be deliberately rude, but small talk like that when someone might be quite anxious and irritated by the whole thing isn’t exactly helpful.

We went upstairs and into a small office which was comfortably dim but scantly decorated (no lights on but just indirect daylight through the window).  The therapist was a retired Speech & Language Therapist brought back in to work with this service, which was only established two years ago.  She spoke casually to help bring my anxiety down and started asking her questions to embellish on my responses for my questionnaire.  Can’t remember if I mentioned it in a previous entry (and I’m too lazy to go back looking), but I sent three versions of my questionnaire through… the full version, which primarily was comprised of long passages from my “This Is My Truth” document I started writing last year, embellished with quotes from Aspergirls by Rudy Simone to back up my responses; a significantly redacted version to make it more brief, because I thought whoever got landed with it might not want to read the full long thing; and then a ‘medium-sized’ version, because I thought the redacted one might have taken out too much, so I put some stuff back but kept the Aspergirls quotes out.  She said that she had read the redacted version, so I said at various points that some of my answers were expanded upon in the long version.

It was crazy how fast the time went with answering the questions.  Some were harder to answer than others; remembering stuff about my time in school was particularly difficult, as was talking about my mother, but talking about how people using my desk at work and moving everything around upsets me (more than it reasonably should) led to me becoming quite animated.  I had some advice from the public speaker I had befriended at The Autism Show last year to make specific mention of my “American-ness” possibly masking my traits even more because we’re encouraged to be more “bubbly” and outgoing.

After the open-ended questions (which took up most of the session), I was asked questions from another scaled questionnaire (similar to the AQ Test but quite a bit different) where I had to answer questions as “Always True”, “True as an Adult”, “True as a Child”, and “Never True”.  Some of these questions I was able to answer quite easily (sometimes with a dropped-tone “yes” with a shade of embarrassment and an uncomfortable giggle) and the others I really had to think and make a best-guess answer.  I think she said it was 50 questions long too, but it didn’t seem to take too long because it was quick responses instead of long explanations.  She explained to me at the end of it (as a means to assuage my anxieties about being misdiagnosed with a mental health condition instead of Asperger’s/Autism) that when they have a client who presents with clear mental health needs (above and beyond what occurs in Autism) that for the second appointment they would ask the psychiatrist to attend, but she assured me that she did not think that I have any other co-existing mental health needs, so that was actually a relief.  Next week is the ADOS assessment with the same lady I saw then and a clinical psychologist, and I was advised that I should know my diagnosis relatively quickly, as they recognise how difficult it can be to be left wondering for too long after.  So, I think that means that by the end of this upcoming week, I may have my diagnosis after nearly a year.  I can’t quite process it.

Believe it or not, I walked out of there (after three hours and forty-five minutes!!) feeling surprisingly happy and light, rather than overwhelmed and done-in.  The worst part of the day was trying to get back to my office… let’s just say the motorway was crawling with people travelling back north after their half term breaks on the southern coast… aaaaand it took over an hour and a half to get to my destination.  The only reason I went back to work afterwards was because there was a caseworker evening out planned over a month ago and I didn’t want to not go (yeah, a roundabout way of saying that I wanted to go).  A nice evening was spent with my caseworker colleagues… cold drinks, conversation, a delicious dinner and sweet dessert.

Yesterday was another full-on day… met my tattoo artist first thing in the morning to go over my tattoo design that is going to be inked in three weeks’ time, then went to meet three friends from the admin part of my team for lunch and hung out with my closest friend from that trio for a few hours afterwards.  I came home and sorted out my iPod with the second set playlists from the last two Manics concerts we saw – Cardiff Castle a year ago today and Swansea Liberty Stadium last Saturday.  I was especially excited to find the BBC Radio 2 compilation of 80s songs which included their cover of (Feels Like) Heaven which was included in last Saturday’s second set.

I listened to the Swansea playlist this morning on my way up to my chiropractor appointment, which helped me feel calm despite waking up feeling a bit overwhelmed.  I adore my chiropractor and it’s not so much that I was feeling overwhelmed or anxious about my appointment specifically because I know what to expect, but I think I’ve just had a lot of input this weekend and I feel my energy levels are diminishing.  What didn’t help things on the drive there was that my Google navigation always seems to take me a different way to her new clinic, which means I have to keep using my navigation app because I’ve not yet learnt the way there so that I can drive without using it.  What especially didn’t help were the frickin’ cyclists on the twisty-turny country lanes I was driving to get there and back.  If I had £1 for every cyclist I encountered on the round trip, I’d have enough to have paid for my appointment.  The worst was a man who was running uphill towards oncoming traffic… like, a good three feet over from the edge of the road.  I was getting more and more cross as the journey went on and had to just come home.

I texted Paul to say that I wasn’t going to be going grocery shopping because I’m fed up with going on my own (which he’s tasked me with the last few weeks despite my protests) and am not leaving the house again (today, not “ever”).  I’ve come home and put a load of laundry in the machine and started writing this entry… it’s taken me a good nearly four hours to get it all done, with a few breaks to hang the laundry outside and have lunch.  I came across this article about Executive Dysfunction which beautifully explains what I feel when I become too overwhelmed with things and start “moving like molasses.”

And that leads up to this exact moment in time, wherein I will bid you adieu until after my second appointment.