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. 😉

Mulling it over…

I have written a letter which I intend to email to the ASC Diagnostic Team tomorrow for the attention of the Speech & Language Therapist and Clinical Psychologist I saw. The majority of it is below, modified for clarity in the context of this blog:

I feel that perhaps enough wasn’t taken seriously or discussed with me in depth from my written questionnaire; you both said that “the person in the room was different from the person in the questionnaire”. I think this is because I have had to “put this mask on so much that it has become my face” and that my most truthful self is the one written about in my questionnaire; it’s too painful for me to reveal that person in a room with complete strangers, though perhaps it would have been better to do so because of the outcome of the two appointments.

I feel that I was discredited because I’m too sociable. I feel that, despite my indicating early on in the first session that my American-ness may work against me here, this was disregarded. Also, being the firstborn in my family could also be an indicator as to why I am outgoing, but being outgoing is not a contra-indicator of ASC; being outgoing is a big feature of being from America – if we don’t take initiative and present as “confident”, we’re classified as “weird”. In England, one is allowed to be quiet and more reserved. I don’t believe that the reality of how I was taught to be was fully taken into account, and certainly, my more ASC-type traits did not come out in just seven hours of observation.

Watch Jennifer Cook O’Toole on YouTube (https://www.youtube.com/user/AsperkidsVideos) – remind you of anyone? She is a well-known writer with ASC and is very American and outgoing, and probably would have been undiagnosed in the UK.

I have related my experience to a fellow female expat who is a writer and public speaker with ASC (I will refer to her as G); I have been chatting with her periodically online since meeting at the Autism Show in Birmingham last summer. She indicated that I may need a longer than average assessment and this would be in keeping with the Equality Act of 2010, which would argue that reasonable adjustments need to be made so that I am not inadvertently discriminated against because I am from a different culture. She said a longer assessment would be totally reasonable to ask for as 50% of the diagnosis rests on how I interact socially and I’m from another country where social interaction is reinforced differently (remember that I was 23 when I moved to the UK, so beyond my formative years). This is especially true if your service is considering denying the diagnosis based on my social presentation. As you know, women with ASC are good at hiding their traits, and American women will be exceptionally good at hiding them. G’s first diagnostic appointment resulted in her being told that she did not have ASC, but following further appointments for a second opinion, she was eventually diagnosed. I did not think that I would have to go through the same uphill struggle that she has; she is also the one who shared the YouTube link above.

Not much was discussed regarding how I felt about being on the periphery of my social group at school, despite me explaining how traumatic it was finishing high school and just completely obliterating my relationships; that is not typical behaviour, especially since I couldn’t identify a particular incident or altercation which caused it. G also read the extended version of my questionnaire and said the following (this was via email communication):

You mentioned feeling like you were on the periphery of your social group at school.  You mentioned being bullied and taking times away from people.  There was some detail but try to dig out more. It may be hard to do with you not being able to recognise and retell the specifics of what transpired or what went wrong. It’s hard to know at which moment you were “being weird” if you don’t know when you’re “being weird”.

A person on the spectrum would be bad at explaining exactly when they “got it wrong” socially, why they didn’t click with the group as well as others. I imagine this is the most difficult part for you to dissect, but this also is the part that your “outgoing” personality masks the most.  They aren’t seeing the social disconnect in the room, so you need to dissect past social exchanges and explain where it has happened.

It’s hard for me to recall back this far, as the high school fallout occurred 12 years ago and my memory is patchy at best. The only things I seem to recall in clear detail are things that had very strong emotions attached, usually of guilt or shame, which I have worked hard to cast from my mind because they are so debilitating. When I think about finishing high school, I can only remember feeling very anxious, uncertain and out of control. I think I cast away my friendships from the past 4-7 years [middle school into high school] at that point because that gave me some semblance of control, despite it completely isolating me between graduation and starting afresh at university in the dorms. I did very little that summer break because all my friends must have grown weary of trying to engage me and dealing with my flat-out refusal. Like I indicated on my questionnaire, I’ve “virtually reconnected” with most of these friends, but we have not spoken of what occurred at the end of high school, and while they are on my Facebook friends list, we do not talk like friends do. We may exchange birthday greetings, but that’s about it – how much more superficial can this be?? We have reconnected as “someone that I used to know” but that’s about it. Does that help?? Just because I appeared on the surface to get along with them all fine in my early years, doesn’t what happened in adolescence obscure that somewhat?

G also indicated that I wrote a lot about rigidity and a need for sameness and routine in my life in ways that have nothing to do with my sensory issues, and she said, “I don’t know how anyone can dismiss these.”

She indicated certain points from my questionnaire under Current Difficulties which jumped out at her:

  • needing sameness when living with Paul’s mother
  • I hate answering the phone, especially at work
  • I struggle being in overcrowded spaces where personal space can be an issue, especially any store which becomes crowded with shoppers prompts me to leave
  • social blindness when out in public
  • group conversations, especially being interrupted and unable to finish my thought or story – present in childhood and adulthood.
  • I can understand sarcasm, but only when context is given
  • perfectionism, which I had always attributed to being a “typical first born”, which can explain why I am so outgoing
  • as a child, I was very particular about keeping my toys in order and in pristine condition; my dad’s questionnaire probably didn’t say anything about this and he would probably have put it down to having taught me to respect my belongings… it was much more than that.
  • I preferred playing alone a lot of the time and didn’t regularly have friends over; I also did not (and still do not) initiating interactions and prefer someone else taking the lead and joining in when appropriate. I do not feel confident in initiating but will only do so when no one else will because I’m frustrated and want to get on with whatever the task is because I can’t take the awkward silence anymore.
  • you had me talk in detail about the bullying that I endured; I thought surely this would have mattered more strongly – again, just because my dad didn’t pick up on it does not mean it didn’t happen; I was quite private and didn’t tell my parents everything or would just tell them things were fine
  • particular about colour-coding things, especially in a ‘rainbow’ order
  • need for symmetry and matching
  • borderline ritualistic about numbers – I even described how Paul’s and my wedding date was “pleasant” – no one else I know has done that
  • resorting to putting on the same movies or TV series that I’ve seen multiple times to have on in the background – I can’t even begin to guess how many times I’ve watched and re-watched Daria on my Amazon Fire TV box or on my Fire Tablet when getting ready (for work or going out)
  • parking space at work and parking near an edge so I can find my car again
  • gauging the speed of fast-moving objects
  • handwriting and drawing – having an awkward grip and not ever being picked up on for it
  • problems with hormonal birth control – although others might not register this, but she agrees this demonstrates a fragile chemistry and I felt was quite compelling

G also attached some PowerPoint slides called Missed Diagnosis or Misdiagnosis? Girls and Women in the Autism Spectrum from Dr Judith Gould, Director of the NAS Lorna Wing Centre for Autism. I will attach it with this letter but I am going to highlight some of the stronger points here:

  • Historically there has been a strong gender bias of more males than females; as a result, professionals are less likely to diagnose girls/women even when symptoms and behaviours are evident
  • Asperger (1944) suggested autistic traits in females become evident only after puberty
    • My dad moved out of the family home when I was 13 years old and only saw me once every two weeks for several years, so he would not have necessarily noticed these traits and would assume my stroppiness whenever he came to visit was because of being a teenager rather than anything else presenting differently to my peers. I would agree that difficulties became more present after moving up through middle school into high school, culminating in the friendship breakdown at the end of my senior year of high school.
  • There is still a strong gender bias towards diagnosing boys (linked with descriptions in the International Classification Systems)
  • Social Interaction
    • Girls more able to follow social actions by delayed imitation; they observe children and copy them – masks symptoms
    • They are on the periphery of social activities [which I highlighted]
    • Girls more aware and feel a need to interact socially
    • When involved in social play are often led by peers rather than initiating contact [I agree with this – I rarely initiate because I don’t feel confident enough to do so.]
    • Girls more socially immature and passive than typically developing peers
    • In primary school more likely to be ‘mothered’ by other girls but bullied in secondary school [YES to the second part for sure; I can’t remember being ‘mothered’ in elementary school.]
  • Social Communication
    • Little difference in acquiring speech in girls and boys
    • Girls generally have superior linguistic abilities to boys of a similar cognitive level
    • In society, girls are expected to be social in their communication but they do not “do social chit-chat or make meaningless comments to facilitate social communication” [when I do make social chit-chat, it’s to quell the awkward feelings when not much is being said… that’s more unbearable for me than sitting in complete silence when there’s a lull in the conversation.]
  • Social Imagination
    • When involved in solitary doll play, they have a ‘script’ and may reproduce a real event or a scene from a book or film [I vaguely recall playing with my Barbies with an almost soap opera-like script, as when I was at home with my mother, she would regularly watch The Young & The Restless.]
    • There is a lack of reciprocity in their social play and can be controlling or domineering [I would get cross if my little brother wasn’t playing the way I wanted him to, which would lead to him and I bickering and fighting, which was probably minimised to sibling interaction.]
  • Special Interests and Routines
    • The male stereotype of autism has clouded the issue of diagnosis
    • Girls are more passive and collect information on people rather than things
    • The interests of girls in the spectrum are similar to those of other girls
    • Perfectionism is frequently seen in girls [Ding! Ding! Ding!]
    • It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests [I minimised the intensity of my areas of interests in the appointments because I have enough social wherewithal to know when it is and is not appropriate to talk about them in great detail, but that doesn’t mean that they are not there. Again, something not touched on much in my two appointments.]
  • The Diagnostic Criteria
    • The current systems do not give examples of types of difficulties shown in girls
    • There is a need for a wider perspective regarding social, communication and imaginative dimensions in addition to special interests and rigidity of behaviour
    • There is a need to ask the right questions and make appropriate observations
    • Over- and under-reaction to sensory input is an important feature for all on the autism spectrum and is common in females
  • The Importance of Diagnosis
    • A diagnosis is the starting point in providing appropriate support
    • A timely diagnosis can avoid the difficulties women experience throughout their lives
    • Diagnosis can lead to assessment of needs in employment (amongst other areas)
  • Dale Yaull-Smith, NAS Communication, 2008 – “The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not being picked up on and therefore any social and communication problems they may be having are also overlooked. This effort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.”

I don’t dispute that there may be an element of Sensory Processing Disorder on my part and look forward to meeting with the Occupational Therapist to discuss this further. I have also purchased Too Loud, Too Bright, Too Fast, Too Tight to investigate things further (like I have done with Aspergirls and the other ASC books I have read) in the meantime whilst I’m awaiting the appointment to be made. However, I still feel that my diagnostic process was too short and inconclusive. I’ve been doing my best to keep myself back from the edge of completely shutting down and being signed off work until this is resolved, mostly because I cannot afford to be off work long-term and I know myself enough that if I were to cave in and stay at home in bed, it will be infinitely harder to pull myself out of that funk and get back into work than just persevering with it, no matter how much it emotionally drains me.

You want to see the real me? Please read between the lines of my questionnaire again. Read between the lines of this letter. Yet again in my life, I feel like I’ve been misunderstood and it hurts me to my core that I have to practically beg for this to be understood. The thought of going into work today and facing people was too much to bear, so I’m working from home. I feel like raw nerve endings – on edge, anxious, unsettled, unsoothed – even a nice shower didn’t alleviate my anxiety this morning. Is this what you needed to see? This is the person that is in the questionnaire; I’m sorry you didn’t get to see her in those two short appointments, but considering that I’ve had 31 years of adapting my behaviour to appear “normal”, I think it takes a bit more than six hours to get to see her, especially since she knows how to behave in a clinical setting.

 

Second appointment…

… And disappointment. I think. I’m not quite sure.

So, I’m home after my second appointment which was with the speech and language therapist I saw last week along with a clinical psychologist and it was primarily the ADOS assessment with more talking on my part. They went away and deliberated over half an hour and came back to say that I don’t fulfil the criteria, but they recognise the difficulties I have, especially around sensory processing, are quite significant. But frankly, I’m just too damn sociable and capable in daily life. I will admit, I cried. A lot. Their debriefing with me took a long time before I was okay enough to drive home. It’ll be a couple of weeks before the report comes back, and they said that I could have a third appointment along with a psychiatrist to evaluate things further. It’s gonna take some time to process all of this because I had it in my head that Asperger’s (Autism) made the most sense to explain “me”. I’m glad they acknowledged the sensory stuff and I’ll be waitlisted to see the Occupational Therapist at some point (they couldn’t confidently tell me how long the wait list is) which will help me at work. I just feel a bit numb right now and I don’t know what to think.

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.

It’s happening… It’s finally happening.

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

Oh. My. God.

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

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

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

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

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

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

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

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

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

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

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

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

So, wish me luck for tomorrow…

My White Whale – The Interview

I’ve titled this entry referring to the White Whale in Moby Dick to use in this context: “To describe an opponent/nemesis who is extremely difficult to defeat; can also apply to miscellaneous games or events which are difficult to master.”

So, I realise it’s been a little while again, but to be fair, I’ve had another few cognitively exhausting weeks which included preparing for an interview which I was originally convinced that I didn’t get offered.

I’ll rewind a bit.

I saw a job posting for my local Local Authority for a Fostering Social Worker post in the fostering support team (i.e. supporting carers directly versus recruiting them, which was my downfall in the independent fostering agencies I tried working for a few years ago).  I was on the fence about whether I wanted to re-enter the field I’ve been out of for over three years but thought I had nothing to lose by at least applying.  So I did, and I had expected to hear back exactly two weeks after the closing date (which was the first May bank holiday).  When I heard nothing by the end of the Monday a fortnight later, I thought that it wasn’t meant to be… until Tuesday morning when I received the email inviting me to interview.

Because the last time I tried applying for a SEN Casework role with this Local Authority and I didn’t get offered the job because I didn’t fully answer the questions – (because how can you ask a three-part question and expect ANYONE to be able to answer it fully??) – so I actually went so far as to ask the Recruitment Team if I could have the written questions available to me in the interview (n.b. not asking for them beforehand), as I am awaiting an assessment for Autism.  Beyond that, I spent time on the phone with my friend who is a Kinship Care social worker and chatting to a couple of my friends in my current team, doing my best to prepare for this interview.

Well, the interview was two days ago.  I’ll give you the spoiler alert now: I didn’t get offered the job.

I got to the first part of the interview at 10:20 (for a 10:30 interview), but the lady on reception didn’t ring up to the team to say I was there until 10:32 – which made me mad, because surely that would say to them that I got there late!! When the admin came down to collect me, I made it a point to say that I was there early and that I couldn’t understand why the receptionist didn’t ring up sooner… especially since there were prolonged silences with her and a man who I could only guess was a security type person (walkie-talkie on his belt) interspersed with awkward chit-chat.

Anyway, get into the interview room and have the questions put in front of me, introductions made to the interview panel – the team manager for the post in question recognised me from when I applied to this role about three years ago where I missed the benchmark by 5 points.  They asked me the questions, I re-read them to make sure I understood them, and I did my best to answer them.  I was even given the opportunity to return to any of my responses to give more information, which I did for one question wherein it was about research or serious case review informing practice… I mentioned my interest in Autism and I brought it back to relating to foster carers looking after children on the spectrum.  I walked out feeling fairly confident.

I then had an hour to kill before the second part of the interview… all that was mentioned in the email was an hour-long session with “young ambassadors” with the other candidates… delightfully vague, right?  So I had no idea what to expect.  I get led into the room with the other two candidates – one slightly older and one slightly older than her – and in front of us on the table was a range of arts and crafts supplies with big pieces of paper taped to the wall behind us.  The activity was also delightfully vague – “illustrate what you think a good fostering social worker looks like”.  Not being funny, but I am not a super crafty person anyway, let alone when put on the spot and expected to be instantaneously creative.  I couldn’t hide my horror and tried my best to follow the lead of the other candidates.  I can’t really draw for anything, so rather than illustrating, I was just writing words on the side of the outline of the person.  I did the best that I could despite feeling horribly uncomfortable.

Fast forward about four hours after the interview and I get the phone call.  Something along the lines of, “thank you for coming in, it was lovely to meet you, you have a lot of warmth and passion, however….” and then the most infuriating thing: “the candidate we selected, it was apparent in her responses that she has had more [quantity] recent involvement of direct work with children and that did not come across as much in your responses”.  I was starting to fume.  I reiterated that I answered the questions as they were presented to me, and if they wanted me to talk about that, then I would have done, but I didn’t feel like that was asked in any of the questions.  At this point, because I had nothing to lose because I already didn’t have the job, I explained to her that I’m awaiting an assessment for Autism (as I wasn’t sure if the Recruitment Team indicated this or not), and why I asked for the questions to be written out for me to read after asked verbally was because I wanted to be sure I was answering all parts of the questions.  She didn’t seem to respond much to this revelation, but thanked me again for coming along and best of luck, etc. all the same bullshit you dismiss someone with.

I realise that a diagnosis is not going to change much in my day to day life, but I realise that it’s probably gonna make it harder for me to get a new job because I can’t get past the interview part when there are veiled questions behind the questions I’m actually being asked.  It’s almost like I need a subtext interpreter in an interview… is it so wrong that I take things at face value?  I don’t think people understand my difficulties with language interaction because I am very articulate… but processing verbal information takes me a long time and it’s hard for me to read into the subtext or find the implied questions.  I’m so mad about this.  It’s not even like I was that desperate to get the job, but I’m more upset about the fact that I didn’t get the job is basically because of my language difficulties, which I’ve only become aware of since delving into this whole diagnosis journey.  I feel like I want to complain to someone… the Recruitment Team, or the National Autistic Society (to seek an advocate to help me complain)… but then, on the other hand, I wonder if it’s even worth it.  People will just continue to find other reasons to not hire someone even if it’s not directly because of their Autism.  What frustrates me even more is that I have successfully worked as a social worker for nearly five years before I even discovered that I may be on the spectrum… but clearly that counts for nothing.

On the other hand, I’m in a good position because I still have a permanent job within a team where I have several friends who understand and support my journey to diagnosis; now whether this is just because of the nature of our job (Special Educational Needs) or that I’m just lucky enough to be around caring, understanding people, it’s hard to say.

Like all my other recent interview rejections, I’ll eventually get over this one too, but I’m still angry about it… but for the first time, I’m not mad so much at myself but rather the unwritten rules of the interview game which I’m clearly not privy to.

Until the next one… 😥

Understanding the Spectrum

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

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

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

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

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

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

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

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