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. 🙂 🌸

Advertisements

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.