I wrote this fun piece for Spectrum Women for Autism Acceptance Month in April. Not for the squeamish but I try to break down taboos around periods!
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. 🙂 🌸
This will not be a political post, but I will be making reference to the current political climate online, especially on Facebook.
I joined Facebook in November 2004 – one day after I turned 20. I am now 32, which means that I’ve spent just over 1/3 of my life on Facebook. This fact in and of itself depresses me to a certain degree. Of that time, 2/3 of it has been me living in the UK; I use this as an excuse for keeping it going, as it “keeps me connected” with friends in the US, as well as my cousins & aunt. However, I am finding myself feeling increasingly upset/frustrated by scrolling through my news feed.
The state of the world at present terrifies me. Being Aspie, I’m resistant to change at the best of times (even the supermarket rearranging their shelves and it taking me an extra minute to find what I’m looking for is enough to send me into a mini-tizzy) but the swing from the 44th to the 45th President of the United States is as polarised of a swing that we’ve experienced in a generation. Even though I’m living 3,500+ miles away from America, their level of power in the world arena is undeniable. I am deeply worried about the future of the world – its citizens and the environment.
Facebook in 2004 was very different from today. It was exclusively university students (needed a .edu email address to sign up!) and consisted primarily of frat party photos in varying degrees of fancy dress and “poking” wars with a crush. Today, it’s full of baby photos (first, second or even third babies now), wedding reception photos, and long diatribe rants about the latest political news. I am interested in others’ points of view and in learning more about what I may not understand, but the tone of people’s comments has been becoming increasingly vitriolic, especially from people that I “used to know” (i.e. went to high school together but haven’t communicated since before we graduated).
I don’t think anyone would deny that Aspies are highly sensitive individuals. We take on the emotions from those around us and can feel really drained when energy is running high. Because so many on my news feed are friends from America, I’ve been kept apprised of the political goings-on, especially during the bloodbath that was the 2016 election. Many of my friends shared articles from trusted journalistic outlets, but then I’d see there were over 20 comments on the post, most paragraphs-long, decrying “liberal bias”, “skewed facts”, and other scathing remarks. I opt not to jump in with the comment brigade for fear of being slammed down and hurled a plethora of insults – not because I’m a “special snowflake”, but because I don’t seek out recreational abuse from the trolling types. It’s bad enough seeing exchanges like this on friends’ posts – I can’t bear anymore to look at the thousands of comments on posts by public pages, where the real internet trolls feed and thrive.
It has been recommended to me to contact the counselling-by-telephone service Let’s Talk… I’ve used it several years ago, but I do not feel that their services would help me at present. I find that since becoming self-aware of my Aspie-ness and understanding how my mind works a bit better than before, I am able to unpick things myself and talk things through with likeminded friends (especially my fellow Aspergirl sisters – you know who you are 😘). I recognise that I’m burnt out at present – likely from being too strong for too long – and I need to retreat into my protective bubble to recuperate and regroup. Part of this will be actively self-limiting my use of Facebook, unfollowing those whose posts will likely cause me undue anguish, and outright unfriending those with whom I have no active connection anymore. I have seen articles over time talking about how people can become depressed by using Facebook, as we tend to self-censor (i.e. putting our best selves forward for others to see) and if we do it ourselves, of course others on our newsfeeds will be doing this, so we base our own lives on the filtered versions of others… no wonder we end up feeling inadequate and down. It takes a strong person to recognise this and pull themselves out of it.
I know I am a strong person so with my level of determination, I will be able to do it. I just cannot rush it. My lack of patience for waiting will interfere, but having several voices of reason around me will help keep me in check. This is going to sound cheesy and cliche, but seriously, since joining the International Aspergirl Society and becoming actively involved with members, finding the sisterhood has been so amazing. While we are all individuals with unique life experiences, there is a common thread that we all share which helps us (or at least this is true for me) feel less alone and isolated. I am so grateful and do not take it for granted whatsoever. This has helped keep me going over the last several weeks where I was feeling quite sad and alone. Now I feel like I can face what life throws at me because I am supported and loved. 🌸
When Samantha Craft of Everyday Aspie posted on her Facebook page about doing a “blog tour” of interviews with other bloggers, I had to reach out! She may be best known for doing the unofficial but widely shared list of Ten Asperger’s Traits (Women, Females, Girls) – one of the first lists I came across during my preliminary investigations into my own Aspie-ness. I am grateful for her time in completing my interview questions and I hope you enjoy getting to know more about her! 😊🌸
Firstly, thank you for your time and welcome to …i am my own experience… and this “stop” on your blog tour!
Thank you for taking the time to interview me. I love the name “Cherry Blossom Tree.” I have a beautiful aged cherry blossom tree right out my dining room window.
I’ve really enjoyed reading your book, Everyday Aspergers [Amazon UK eBook], and understand that it took ten years to compile and get published – a big achievement indeed! What brought you to writing a blog in the first place?
Yes. I am quite relieved the process is over. It still feels a bit unbelievable. Thank you for taking the time to read the book. I appreciate that. I began blogging in my mid-forties because I was confused by my own diagnosis in regard to what Asperger’s meant to me and how it related to who I already was. I also continued writing because of an experience I had at a university I was attending, in which I was shamed for mentioning I had Asperger’s Syndrome. I was motivated to keep writing to show others they weren’t alone and to spread the word about autism, particularly autistic women and late-age diagnosis. But mostly, it was a place for me to process my own thoughts.
Can you tell me about what has helped you in blogging?
Hmmm. That question can be taken a few different ways. What helped me to blog was all of the thoughts and ideas I had in my head. Getting the diagnosis triggered this whole self-analysis, and that in turn triggered my need to express myself through writing. I’d say the angst inside was a primary motivator, that and the initial support (and later ongoing support) that I received from other bloggers, and later on fellow Asperians
How would you describe your blogging style?
At first I largely entertained. I thought I had to produce something of value to keep anyone interested. There is a lot of humour in my writings during the first year on my blog Everyday Asperger’s. Later, I started to write from the heart, to purge my soul, so to speak. I would simply sit at the computer and listen to myself tell me what to write. It was similar to taking dictation. I just wrote what I heard… my fingers typed. It was a very healing process and very therapeutic. I rarely set out to write on a specific subject or topic, and let what was in me rise up and spill out onto the pages. Most of my time went to editing, sometimes a few hours, because of my dyslexia and dysgraphia and the way I process language. The content itself flowed out quite naturally, and sometimes too fast for my fingers to keep up!
Was there a particular author/writer who inspired you to write?
No. I did run into AlienHippy at the start. She has a wonderful Christian-based blog on her experience as an adult Asperian. If anyone motivated me to continue on, it was her, and a few others; not because of their writing, but because of their kind spirits.
Can you briefly explain for my readers about when you first wondered if/realised that you might be on the Autism Spectrum?
I first seriously considered I might be on the spectrum after I had been taking my middle son to therapy. As part of the requirement for the master’s degree program in counselling I had started, I had to visit a mental health therapist. She happened to be my son’s therapist, and I asked her if she suspected I might have ASD, and she was most definitely sure I did. From there, I sought out an official diagnosis.
How has writing your blog helped you during your diagnostic journey? Has it been a hindrance at all?
The only hindrance happened when one person was offended by something I did/said on Facebook, which I cannot remember at this point, nor can I remember the person’s name. (That’s one of the benefits of dyslexia, face-blindness, and short-term memory issues – I don’t often remember people who, at one point or another, caused me strife). I was deeply vulnerable the first year or so after I was diagnosed and took people’s opinions to heart. I have sensed grown a lot and have tons of strength. But back then, I almost stopped blogging based on judgments and assumptions a person was not only saying about me but spreading on Facebook. I actually wrote a post about the entire experience, not referencing the person or supplying clues about the person. I didn’t wish any retaliation to come that person’s way. I was deeply hurt. But overall, astonishingly, with well over 1 million hits on that blog, that was the only incident! I certainly didn’t think when I started I would be blogging over four years, that’s for sure.
When did you get the idea for My Spectrum Suite? How long did it take for it to become what you hoped for it to be?
When I was about to publish my book, I wanted to form a company to represent the book, beyond the publisher. I wanted a place to display activities associated with Asperger’s, speaking engagements, and share about some of the awesome people I met on the spectrum. I created Spectrum Suite to showcase Aspergians’ gifts in art and literature. I also have a great resource page their of other ASD professionals and artists.
How has becoming a known name in the online Autism/Asperger’s community been for you? What (if anything) would you change about it?
It doesn’t feel real most of the time. When I went to the FABULOUS ANCA Worldwide Autism Festival event in Vancouver, Canada in early October this year, I walked into a formal award event and the sweetest lady (animation artist), Liz, turned around and said, “Are you Samantha Craft? You are my idol. I’ve been following you for years.” Then the lady behind me, another nominee up for Community Mentor, tapped me on the shoulder and whispered with a smile, “I follow your blog, too.” Turns out most of the women from the US at ANCA knew of me or my blog. That felt strange.
I don’t often feel emotions about what I’ve accomplished. I know logically I have accomplished something but don’t feel any sense of pride. The process felt necessary and natural to me — to process, to share, to give, to connect, to write. It wasn’t something I set out to do; meaning, I didn’t set out for people to know me. When I do feel a sense of accomplishment is when I am able to connect one autistic to the others I know and form new friendships and companionships for individuals. I am most happy about that. I cry about that. The rest doesn’t seem significant, even though perhaps it ought to. Kind of like if you brushed your teeth and got thanked for it. I was doing something I felt I not only needed to do, but had to do. It was my calling and soul’s purpose. And I benefited from the experience internally, just as much as anyone else, if not more.
I’m quite excited to be part of the International Aspergirl® Society with you! As it’s still quite new, what do you hope for the future with this Society and for Aspie women and girls?
That’s great you are a member. With all I’m doing, you need to nudge me and remind me to pop on in. Rudy has some great videos listed there. I hope that her vision for the society is reached and that more and more women find a voice, connection, and a way to use their gifts. I think organizations like Rudy’s can go along way in providing opportunity, education, awareness, and a safe place for autistics.
If you had the chance to speak to your younger self, what advice would you give her?
I actually wrote a letter to my younger self twice in the book. One about letting her know everything is going to be okay and one about puberty and boys. Those are the things I’d still tell her. I’d let her know that despite what she thinks she is brilliant, loving, pretty, and going to be safe one day.
To conclude, what would be five random facts about you that no one would ever guess? [these don’t need to be too personal, but just a bit fun!]
Oh, that’s a great question! Let’s see. Most people know so much about me! I like to joke I am a literal open book now . . . hmmm . . Off the top of my head:
- My uncle dated Patty Hearst. (I love to share that one for some reason)
- I am very self-conscious of my upper arms, and have been since I was in my 20s.
- I get mad at myself, if I think anything judgmental about anyone.
- I don’t know if I ever want to write another book, after the long process to write the first.
- I love my toes. They are really cute.
Thank you for this wonderful interview. Thank YOU for your lovely responses!
Please be sure to check out Samantha Craft’s pages across the Internet!