Family Stress

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.

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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

Bah, humbug.

Christmas… called by some “the most wonderful time of the year”.  I personally consider it a massive inconvenience, expensive and full of unrealistic expectations.

When I was a kid, I didn’t really question things, as this is what the adults around me were doing as it was normal.  Why would I question it?  I liked the prospect of getting presents (what kid wouldn’t?!), and I loved the Christmas lights… especially the bubble lights we had on our mantle and there were a few ornaments that I particularly liked… either the look or the feel of them.  I loved sitting in the living room watching TV with the normal lights off, bathing in the glow of the tree and mantle decorations.  Seeing my cousins and playing with our new toys was always a highlight.

Now that I’m older and living away from my place of origin (n.b. I consider England “home” now, as the house I grew up in ceased to be my home when my mother stopped talking to me), and particularly because there are no small children in our immediate family (that responsibility will rest on Paul’s and my shoulders eventually), I don’t see the point in going nuts for decorating just for us.

Firstly, whilst our mortgage finally was sorted last month, his mother still has not been able to move into her flat due to a busted water heater (who would’ve thought that a flat sitting empty and unused for nearly a year would have a detrimental effect on the appliances?!), so I’m upset that it’s another Christmas where we’re not independent; she is going to be out of the country for Christmas, but it’s the principle of it all.  As such, I still don’t feel like this house is completely “our own” yet, and I’m not motivated to decorate because I’m feeling depressed.

Secondly, we have not yet accumulated any sort of Christmas decorations, so if we were to decorate, we’d have to go out and buy loads of tat, and we have more important things to put money towards other than silly decorations that would only be out for a few weeks and spend the majority of the time in a box in the loft.

Thirdly, even if we had decorations, (as briefly touched on in point 2) I don’t see the point in hauling stuff out to put up for a brief period of time just to put them away again after a few weeks, especially if we’re not having any guests over… so what is the benefit?  For ourselves?  The greater benefit would be for us to just leave our house as it is… requires a lot less effort!

OK, so that’s decorations addressed… now, presents.

Capitalism at its finest.

It’s cute when you’re a kid and you buy your dad another pocket-sized toolkit with money your mom gave you for the Secret Santa shop set up in the gymnasium of your elementary school.  When you’re in your 30s and you know your dad has what he needs and would really only benefit from gift cards for petrol… it kinda takes the excitement out… because there’s nothing worse than getting something for someone that you think they’ll really like, only to be greeted with “Present Face” (very funny video by comedy duo Garfunkel & Oates).  Or worse… when you’ve not been asked what you would like for Christmas and you’re given stuff which either you don’t need or you don’t particularly want… and you’re trying to avoid giving “Present Face” yourself… when you know for a fact that your face regularly betrays you and reveals what you’re thinking to other people.

Expectations are also set waaaaaaaay too high by advertisers.  Light fluffy snow, happy families, big dinner, loads of presents… no one’s Christmas is ever that perfect.  Never.  Stop perpetuating this falsehood.  It’s just wrong.

Going on a slight tangent… homelessness, especially at this time of year, breaks my heart.  In the book A Pony In The Bedroom (which I have referenced before in this post), Susan Dunne talks about a period of time when she was homeless, which gave me a different perspective about homelessness.  When we were in Birmingham last week, I saw several rough sleepers on the pavement, and it made me very sad; what made me feel worse was that we kept walking by, just like everyone else around us.  Later on, I was heartened by seeing a Homeless Outreach Team wearing high-viz vests going around and talking to them.  I think it’s because I feel conditioned as a woman to feel scared about approaching strangers, especially homeless folks, as the assumption is that you’ll get robbed or attacked in some other vicious way.  I might look into supporting a local homeless support service so I feel less guilty about not stopping to help.

Anyway, there was a reason for that tangent.  Perpetuating the falsehood that Christmas is some sort of magical time of year and everything is perfect couldn’t be further from the truth for the homeless and the impoverished.  People seem to become blinded by these truths and choose to ignore it.

I suppose it just all frustrates me so much.  It’s too much for one person to put right on their own.

Another thing that bothers me is the assumption that, unless otherwise identified as affiliating with another religion other than some derivation of Christianity, you “celebrate” Christmas and are often wished “Merry Christmas”.  Simple and inoffensive, one may think, but I honestly identify myself as Atheist… that is, Atheism, meaning “a lack of belief in gods”.

I have never subscribed to any religion and if life has taught me anything, religion causes more harm than good.  So I feel like I can’t actually say that I don’t believe in Christmas as I don’t believe in Christianity, because I don’t really feel like I have to justify my beliefs (or lack thereof) to anyone who will not actually ever convince me of a bearded man who lives in the sky.  So, if anything, I feel like it’s hypocritical to buy into the whole Christmas malarkey just to not be a social outcast because everyone (n.b. obviously I don’t mean everyone, but you know what I mean) else does when I don’t believe in it.

It’s not like I’m against the whole “peace, togetherness, kindness” stuff that comes with the season, but that’s just being a good person – you don’t need a religion to make you not be a dick to other people.

Plus, there’s the whole thing how Christmas was actually stolen from the Pagans’ celebration of Yule, so…

I’m not a Grinch in that I’m not saying that no one should celebrate Christmas or that those who do are hypocrites (there are hypocrites everywhere); all I’m saying is that I would feel hypocritical if I partook in the whole Christmas thing in the way that society expects me to.  That’s not to say that I’m not going to be having Christmas dinner with Paul and my dad & Rita; if anything, Christmas is a nice excuse to have a lush homecooked meal. 🙂

If Christmas is something you celebrate, then Happy Christmas to you and your family.  If you celebrate anything else, I send you good wishes as well [I’ll leave you to fill in the blank].  Or, if like me, you don’t choose to celebrate any of the above, then good for you.  Happy December.