The Trauma of Being an Empathic Autistic Advocate

When you scratch the surface of all autistic advocates, an indelible layer of trauma exists from our early lives, whether we were professionally identified in childhood, adolescence or not until adulthood. Whether the trauma is caused by inadvertent behavioural conditioning from our parents & teachers, abuse in its many varieties (physical, verbal, psychological, etc.), failed friendships, awkward encounters and everything in between, we all have our baggage. I have taken a significant step back from advocacy because I have felt triggered through the actions of autistic activists and from some within the online autistic community.  It’s very hard to keep pushing through when I feel like I’ve been hit right on the nerve that causes me so much upset, heartache and internal “ickiness” that will never go away. I feel the need to state that whilst I hate how certain groups on the political Right have taken the word “triggered” and use it in a derogatory way towards those who they perceive as “special snowflakes”, I cannot think of another word more appropriate word to use.  I hope it’s interpreted in its intended form. I draw a line of differentiation between advocates and activists; both groups aim to have autism and neurodiversity accepted in society (awareness is never enough), but I find that activists can be a bit more “warrior-like” and outwardly angry by actively pointing out what’s wrong with how autistics are treated in a multitude of settings, and advocates tend to take more of a softer approach, sharing personal stories in the hopes of others identifying with their words and helping others speak their truths. Don’t get me wrong – both activists and advocates are essential to changing the world; the problem arises when infighting occurs and one group tells the other what they’re doing is wrong or ineffective. To be transparent, I started writing this post seven months ago – I’ve felt that exhausted by what was happening in the community that I couldn’t bring myself to login to my WordPress account to write anything new, let alone finish this post. Given that I started writing this in April, which is Autism Awareness(/Acceptance) Month, it’s not surprising that I needed to step back.  April turns into a perpetual fight against the blue puzzle piece assault by the Auti$m Organisation That Must Not Be Named, which brings up difficult conversations with friends and strangers alike. You don’t speak for my child – you’re much higher functioning! You don’t know what it’s like – you’re not an Autism Parent! These kinds of conversations never end well and unfortunately perpetuate the divide between the autistic community, parents of autistic children & young adults, and everyone else. Whilst I may not have practised as a social worker since 2013, there is an undying part of me that persists and perseveres for understanding and acceptance – I just don’t have the energy to get as angry as some activists do, and rather do what I can with the energy reserves I have.  I am thankful for those who can get angry about things and continue to function; I just wish that their anger would be directed more appropriately towards those who need to change their attitudes, behaviours and treatment towards the autistic community, not fighting among the ranks of those trying to make a difference for future generations.

Autistic Burnout & Regression

I started this draft back in April.

I got as far as the title.

Executive Functions include basic cognitive processes such as attentional control, cognitive inhibition, inhibitory control, working memory, and cognitive flexibility.

Autistic/Aspie Burnout was brilliantly defined by Planet Autism Blog as: “a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to ‘be normal’, fit in and keep up.”

I won’t go into great detail about what specifically happened, but after several months of desperately “treading water” at work, an angry parent aimed their acerbity towards the local authority directly to me in a quite public and personal manner. Having endured years of working as a front-line social worker and various complex situations in SEND, this was the first time that it was made personal, despite me figuratively bending over backwards to sort this case out in a way that the parent would be happy and, of paramount importance, the child would have their needs best met.

When this all kicked off, I was shocked and rendered speechless; I could not believe what I was reading. When I flagged this up to my manager, she was quite comforting and told me to not worry about it (let’s face it – this advice DOES NOT WORK for me). I went home and told my husband about it, and he too said to not worry about it (see above). The next day, we found out that this parent posted his venomous letter publicly to Facebook. Thankfully, the local authority has a team that can approach Facebook to have such posts removed; however, in my mind, it was out there. My name was out there with libelous information about my professionalism and my dedication to my work. I was floored… I was crushed. I was emotionally numb over the course of the weekend, but come Monday, the start of the next work week, I couldn’t bring myself to leave the house. By Tuesday, I couldn’t stop crying. I phoned my GP and was given an urgent appointment, resulting in me being signed off work with stress. My GP even said to me, “I’ve never seen you this low.” When I explained everything that happened, she was very sweet and empathetic and insisted that I be signed off work.

Now, to tie this all in with the title of the blog (that’s why you came here, after all, not to read my long-winded whinge about how a parent was mean to me).

Following my diagnosis nearly one year ago, one could argue that very little in my life changed – I was still me, after all – but I would argue that everything in my life changed. My understanding of myself changed massively. Suddenly, the things I silently suffered with, I had the language to be able to explain them rather than just “deal with it” whilst it was silently causing me agony with an “oh, it’s not a big deal” attitude when it was a massive deal to me. I gained a network of friends – my AsperSisters – who shared my experiences and provided the validation I had craved for so much of my life.

Whilst so many positives came from my diagnosis, there still was a lot of new information flying around my head and I became even more aware of my particular set of needs. Despite identifying these things and the best way to manage them, I kept pushing myself in my usual way… which has led to the burnout.

The burnout where migraines prevent me from getting out of bed, let alone doing anything remotely social and otherwise enjoyable. The burnout where these migraines led to me being physically unwell – a new symptom which I had never experienced before (bearing in mind I’ve suffered from migraines since age 14). The burnout where I am left feeling feeble and useless, not only to myself but to others who rely on me.

The burnout led to the regression. The regression is where things that were once easily completed now take much more cognitive and physical energy. The biggest area in my life where the regression has hit hard is cleaning the house. [Now I will clarify this by saying we don’t live in a filthy house which is on the verge of being condemned, but rather it’s in a perpetual state of “organised chaos”.] I can just about muster the energy to do a superficial clean & tidy if someone is coming round to the house, but doing a full-blown cleaning blitz like I have done in the past requires too much energy. I’m not sure if it’s just because the house is a lot more space to look after than my previous residences and I just can’t mentally break the task down into smaller pieces or what, but there is some sort of disconnect where I just get stuck.

Another area of regression is going shopping at the grocery store or being out in town. It’s not like I particularly enjoy either of these things, but I could certainly just about cope for enough time to get done what I need to and then leave without incident. Now, I will actively wait to go grocery shopping until a guaranteed quiet time (usually around 7pm Friday or Saturday and either 10am or 2pm on a Sunday) and sometimes have had to resort to putting in my earplugs or headphones in order to minimise sensory overload (noisy kids or the rickety stock trolleys staff drag along with squeaking wheels and rattling metal!). The only time we go into town now is when we get haircuts. Whereas before we would wander amongst the shops and look around for a while, our routine now is to go for an early lunch at Jane’s Pantry, maybe nip into Boots first to pick up a few items, then go home.

Going to Pilates once a week has also taken a back seat whilst I’ve been recuperating from this burnout. We are very lucky to have an amazing Pilates instructor local to us and we enjoy her style of teaching, as she looks after every participant individually and advises how to do the exercises in a way that is best for you. Because I’m no longer a member of the gym where we first started going to her classes, we instead go to one of her sessions at a village hall 6.5 miles away from home. However, by the evening on the day of the class, I just don’t have the energy to sit in the traffic that we inevitably hit to get there… trying to get there before the 6pm start to establish ourselves in our preferred place in the hall means leaving ours around 5:20pm… it should not take half an hour to travel 6.5 miles, but it does and it just takes any energy I had out of me. You know The Spoon Theory? Let’s say by 5pm I have about 3 spoons left for the day; 30 minutes of rush hour traffic can easily take away all 3 of those spoons, leaving me susceptible to meltdown.

I also feel bad that I’ve let a new friend down, though she says that she understands. I met Izzie at the Autism Post-Diagnostic Group I attended from March to April through the NHS, and we struck up a friendship quite quickly. She is working on a young adult fantasy novel and I offered to do some reviewing and editing for her whilst she worked on it. I was captivated by her writing and really enjoyed reading it as I was editing, but found that I was only able to do both for a short space of time. It got to the point where she would spend a fair amount of time doing more writing and re-writing that the document that I had to review was no longer current. She had given me the memory stick again and it has just sat in my laptop bag, untouched, for several weeks. I gave it back to her yesterday (after a frantic search because it wasn’t in the part of my laptop bag that I thought I had left it in!) and apologised profusely that I hadn’t done any more reviewing or editing on it. Izzie is so lovely and said it was really okay, but I still felt bad. I told her that before she wants to submit it to give it to me with a deadline, and that whatever I get done prior to that deadline will be however much I actually do. I really think she’s got amazing potential and I hope someone will want to publish it for her.

Hell, even WRITING, something that I thoroughly enjoy, has been hit by this regression cloud. It categorically should not have taken me nearly FOUR MONTHS to write this flippin’ blog, but here we are on the 1st of August and I’m only getting it finished and published now. I’m hoping that this will knock me out of the funk that I’ve been in…

I have always been one to do too much to prove that I’m not lazy and to overcompensate when I feel like I could be misconstrued as such. Now that I understand that there is an explanation behind my reduced energy levels, recognise what autistic burnout is and how it presents in me, I’m hoping that I’ll be able to move forward in a more positive way. I will do my best to do more that makes me happy and less of what drains me and makes me miserable.

Thanks for sticking with me during this whinge and moan. πŸ™‚ 🌸

My White Whale – The Interview (Take 2)

Or: How Moby Dicked Me Over Again

[clever alternate title courtesy of Paul πŸ˜‰]

[For context, see My White Whale – The Interview

UGH.  I feel like I’m teetering on the edge of a massive meltdown and am desperately trying to hold myself together.  This week I have been contending with a cold, an interview (detailed below), discovering an attempted break-in to our house (looked like an opportunist and thank goodness they didn’t succeed, but dealing with the police and home insurance has been cognitively demanding), and feeling a growing sense of dread over the American Presidential election next week (I can’t even go there right now… either outcome fills me with dread, but obviously one outcome would be far worse than the other).

We came back from our holiday the other week with me having a little bit of a scratchy throat.  Participating in an outdoor choir performance the next day probably didn’t help things and I now have my standard autumnal viral infection/”cold” and persistent cough.  Greaaaat.

On Monday, I had an interview with my local Local Authority for a position with the SEN Casework Team.  As I now have my official diagnosis, I was able to confidently ask for the reasonable adjustment of having the written questions available to me in the interview (n.b. not asking for them beforehand) and I thought that surely I would be able to approach this interview in the best position possible – I’m interviewing for a job I’m doing every day anyway, and I don’t have to solely rely on my auditory processing skills to be able to fully answer the questions – WHAT COULD GO WRONG?

Lots, apparently.

This service had recently undergone a massive restructuring so there were 5 posts advertised – 3 permanent, 2 fixed term – and two of the three permanent posts would have been great for me.  Despite being kept waiting in the lobby for 45 minutes beyond my scheduled interview time without so much as a “We’re very sorry but we’re running late,” and apologising to the interview panel for still being a bit poorly, I thought I actually did a really good interview.  I was rattling off things relating to the Code of Practice and Education Health & Care Plans and I thought my scenario examples were quite good and gave sufficient evidence of what (I thought) they were asking for in the questions.

They had three full days of interviews (I was advised that they received over 60 applications for these posts) and two days to make decisions and callbacks were made today.  I was told that I scored highly on the knowledge side of things (in terms of understanding the Code of Practice and technicalities of the position), but that I did not score as highly in giving examples of managing difficult scenarios – not that I scored low, but that other candidates scored higher.  With so many qualified applicants, the odds were stacked.

I’m quite disappointed (for obvious reasons) because I really thought I did the best interview possible, but I guess my ability to understand what the interviewers are looking for is still a hindrance (yay for my Aspie brain).  I expressed my disappointment and said that I am very keen to work for this Council again, and she said that it certainly wasn’t a poor interview, but that there were just so many very qualified and able candidates.  What was quite encouraging was that she said to try again if another job was advertised.

However, I am really in the best situation because I had nothing to lose with applying for this job: I have my current job and I have super-supportive colleagues and senior staff around me.  I really cannot say enough about how wonderful they really are; we have a laugh/cry/rant together, we look after each other, and they understand me.  I am not actively trying to leave, but I had to take the punt with this authority as it is closer to home and I’m getting bored of commuting 40-ish minutes each way every day (except when I’m working from home, which can be once or twice a week).

Obviously, it’s not a case that I expected to be given the job because I disclosed that I am autistic; if anything, I still feel like even with the reasonable adjustment of having the questions printed for reference in the interview itself, that still doesn’t change the fact that the questions are quite ambiguous and what I think may be relevant may not be what the interviewers are looking for – it’s that whole Theory of Mind thing again.  I find it hard to anticipate what exactly they want me to respond with.  Do questions have to be ambiguous (even for neurotypicals) because anything else would give the answer away in an inadvertant way and not end up having the “weeding out” effect that interviewing is designed to have?  I feel like there is still a lot that is not understood about autism presentation in adults, especially those who want to work, which is the focus of the current campaign that the National Autistic Society is running about closing the autism employment gap [sign the petition by clicking the link].

I realise that I am in the 16% minority of autistic people in employment; however, I have had brief periods of unemployment a few years ago when a job I had gone for turned out to not be what I was expecting at all and I ended up being fired from it after two and a half months.  I had never felt like such a complete and utter failure before and I hope to never feel that way again.  It was a very bleak and depressing time for me.

When a new job did not come up within the next few weeks, I finally applied for Job Seekers Allowance – my first time ever on any sort of benefit – and when I tried to get it backdated to when I lost my job in the first place, they rejected it and said, “You should have applied straight away.”  How is someone who has never been unemployed or on any benefits supposed to know that implicitly?  When I left that awful job, they didn’t give me any sort of information as to what to do next!  Even thinking about it now brings up awful memories of the deeply rejecting feelings I had.

I still have to indicate on any CV or job application the periods of time I had unemployed (after losing that job and when short-term temporary contracts ended), and while those were in 2012/2013 and I’ve been continuously employed since Sept 2013, I still have to answer to those employment gaps, which would be minor in comparison to others on the Autism Spectrum, I’m sure. In this way, I’m grateful for my diagnosis now so that I can put my past employment experiences into a context of my undiagnosed Autism and hopefully this will help me move forward with future job applications.

We don’t want to sit at home doing nothing; we know that we have a lot to contribute to a job.  We just need to be given reasonable adjustments to show what we can do.

As with every application rejection, I will eventually get over it… but that doesn’t mean that it doesn’t hurt right now. πŸŒΈ

Protecting Oneself

Alternate title: Letting People Down & Feeling Deep Shame and Guilt

I’m having an ethical dilemma… before Christmas, I said I’d go along to this Peter Kay’s Dance for Life event in Birmingham with Polly (a person I am friendly with from this singing group I used to participate in)… and my anxiety was starting to creep up because I couldn’t find any details about it, and then when I realised that Paul & I were going to attend a Thanksgiving service (like a Christening but not) the day after (even though I’d technically agreed to go to the Peter Kay thing prior to the service’s arrangement), I messaged Polly saying that I’m worried about having a very late night when we’d have to get up early for this service where I’m participating in it as well (which isn’t a lie!), but I just feel horrible letting her down and she’s not given me details (bank or PayPal) to pay her back for it.Β  We’ve left it last week that she was going to try to find someone else to use the ticket, but I’ve not heard back yet and I REALLY do not feel comfortable going anymore… I found a video on YouTube and it basically looks like sensory overload + too many people…

Like, my biggest frustration is that I want to want to go, because it could be a lot of fun, but I’ve already psyched myself out of going and I just can’t bear it.Β  The primary problem being that the last thing I want to do is upset Polly, but it doesn’t help that I haven’t seen her in months (not since the funeral of a former member of the same singing group) and I’m not close enough with her yet to be able to share this whole Aspie journey that I’m on… I don’t know what to do. πŸ˜₯

When I’ve had a very full-on experience, it drains me mentally, physically and emotionally… and I worry that if I went along to the Peter Kay thing that I would be coming along to the Thanksgiving service tired and overwhelmed from the night before, especially since I’d be getting back late (after the crush of trying to get out of the venue and ultimately back home) and I don’t fare well on limited sleep, particularly when I need to be my sociable self in a group setting.

It’s very troubling being in my brain… like all of the time.

I feel horribly guilty and am probably beating myself up more than necessary, but that’s what I do best. 😦