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

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… 😥

Fate vs. Destiny?

or, How Much Are You In Control Of Your Own Path in Life?

I always felt like the path my life was on was very linear and pre-determined… after high school, I went to university. After undergrad, I went to grad school. [Those steps were accepted without question because that was just how it was meant to be.] After grad school, I moved to England. After I moved to England though, it suddenly became unregimented, undetermined, unclear and confusing. Somehow I managed to float through – got somewhere to live so I wasn’t staying with my Dad & Rita for longer than I had to (but even that was quite serendipitous and didn’t require a whole hell of a lot of effort on my part); landed my first job and subsequently my first permanent job (which then evolved on a yearly basis thanks to council restructuring, so it almost felt like every year was a new ‘school year’ for me again)… it wasn’t until I ended up going to that first fostering agency which threw my life into a tailspin. In the interview, I only remember the words “recruiting foster carers” being thrown in casually, not identifying it as the core purpose of my job; if I had, I would not have been keen to take on the role, because I felt that my skills did not match that. I persevered, though it was a nightmare for me, sitting vulnerable in shopping centres and supermarkets, hoping that someone would come and talk to me. I could not have been more miserable. I also felt like my manager wasn’t that happy with me and I feel she engineered my exit because, despite my difficulties, I was not getting any support as to what to do (they just assumed I’d “get on with it”, but how can you if you don’t even know where to begin??). I counted how many days I’d actually worked there, and how they could possibly expect me to recruit a whole caseload of new foster carers in 36 DAYS absolutely baffles me. GOOD RIDDANCE to the lot of them. All the short term jobs which followed led to more changes to my routine… teaching assistant roles, Outreach work with teenagers, then the second fostering agency which went down the same avenue as the first eventually… after that, I had consoled myself by saying that I wasn’t actually a failure at being a social worker – I was only failing to find the right role for me and my abilities and skills. Landing into SEN face first ended up being a blessing in disguise, though I still have little struggles here and there, but I am much more able to handle the demands of this role because it’s far more structured in relation to social care, which was chaotic and reactive rather than planned and regulated.

To a degree, that’s how Paul’s and my relationship progressed too, as I learnt from the examples set by my parents and grandparents: first you date, then you get engaged, then you get married, then you have kids. I never felt comfortable with the idea of having kids before getting married, obviously not because of religious reasons (see first full paragraph on page 2), but because that wasn’t the right order in which to do things… what makes it “right”, I cannot define… but I feel quite rigid in that respect and can’t explain why. Obviously, I don’t have to worry about that, because we clearly dated, got engaged and then got married, but I think I would have panicked a bit if I became pregnant “out of sequence”… but again we were both taking the appropriate steps to ensure that didn’t happen.

Anxiety and Stress in one’s chosen career

I moved to the UK to be a social worker, but I lasted in the career less time than it took for me to complete my higher education combined. I trained to do more therapeutic-type social work; ideally this would have been in a school, focusing more on group and individual work with children and adolescents. When I arrived in Britain, I found that such roles didn’t really exist for a social work degree (needed a counselling qualification separately) and my first job was in a very busy Children & Families team. My levels of anxiety and stress were through the roof when I worked in social care – the unpredictability of every day and the high risk of conflict with service users made me incredibly anxious and stressed, leading to periods of being signed off ill by a GP. Since working in SEN, I’ve only been off work when I’ve been genuinely unwell, because I feel far more relaxed and content in this type of work. I still have intermittent ‘spikes’ of anxiety when a case becomes a bit more challenging or complex, but it’s far less intense than when I was a social worker. SEN is much more structured and predictable, as the Code of Practice is quite prescriptive and I like working within clear bounds.

Many of us will become interested in psychology and the helping professions along the way, either because of our diagnosis or in search of it. We find we want to nurture and help others in their journeys because we know how hard it can be.
Because of a combination of high intelligence, low self-esteem and eagerness to begin our new careers, we sometimes bite off more than we can chew.
One of the key things to realise about female AS is this: Society expects us to handle things well based on our intelligence and appearance of normality. Unfortunately, we often demand the same of ourselves.
Even if we can handle it academically or intellectually, it doesn’t mean we can handle it physically or emotionally. We need extra time, extra patience, and more sensitivity than most people. Full stop.
Of course we must, but we’re not told how in a way that we can actually manage. And unfortunately we find that other people don’t always try to get along with us.
Less tolerance for stress also comes with age, but even that has its positive side. Since our anxiety levels have always been very high, and our nerves have been a taut thread pretty much forever, we will now find we have to do something about it or the thread will snap. That means clearly defining to ourselves and others our needs and our boundaries.

(all italicised bullet points quoted from Rudy Simone – Aspergirls: Empowering Females with Asperger Syndrome) [UK Kindle Edition])