sadness

#NotAshamedToBeADD ✨

Okay, so here goes..I don’t know why I feel so nervous writing this out, but I’m just gonna persevere…

[This feels scarier than putting my name & face to my previously anonymous blog!]

To give a bit of context, most of you who have been here for a while know that I was professionally identified [my preferred language for “diagnosed”] as autistic in August 2016 at the age of 31.

This came just over a year after having the realisation that I was potentially autistic in the first place (1 year, 1 month and 24 days later, to be exact).

Hearing about the lived experiences of autistic women speaking at The Autism Show in Birmingham in June 2015 completely bowled me over and helped me realise that my perceived failings throughout my life were not as a result of me being lazy or not smart or anything being “wrong” with me, but because of a distinct neurological difference.

In this time, I’ve written about the subject in my own blog, as a contributing writer for Spectrum Women, the National Autistic Society and NeuroClastic, and even having my contributions committed to print in the book Spectrum Women: Walking to the Beat of Autism (I’m still most proud of this).

I’ve obtained a qualification as a Certified Autism Specialist and have helped change the narrative about neurodiversity at my workplace, including changing their Tailored Adjustment Agreement to be geared more towards helping those with invisible disabilities get the reasonable adjustments they need to succeed in the workplace.

Despite all this, I still got horrendous spells of imposter syndrome hit me… feeling like a fake and a phoney. I would end up in deep depressive spirals of rejection, even at the most innocuous slight that most would just brush aside and not spare a second thought about.

Then I learned about the term “Rejection Sensitive Dysphoria”. As defined by ADDitude magazine, it is “the extreme emotional sensitivity and pain triggered by the perception that a person has been rejected or criticized by important people in their life. It may also be triggered by a sense of falling short—failing to meet their own high standards or others’ expectations.”

Now, I already knew I had massive issues around rejection. I wrote about the main aspects of it in the first blog post-dx for me so I won’t rehash them here.

What was new about it to me was how it’s a key feature of ADHD.

I had previously seen & enjoyed videos made by How To ADHD (website here, YouTube here) and noted that there’s a lot of crossover between autism & ADHD. Not only this, but several of my autistic advocate friends have been professionally identified as being ADHD too.

So, I started looking into how ADHD presents in women & girls and how they’re often misdiagnosed or have a missed diagnosis altogether.

The proverbial bells started going off in my head.

The same that happened when I heard the autistic women’s talks at The Autism Show in 2015.

I felt that less research was required on this, mostly because I’ve already had the identification of autism and there is a lot of crossover, so it meant that I could just focus on the elements unique to ADHD.

I then swung between “do I want to be assessed and professionally identified and potentially medicated?” and “do I want to strictly self-identify because the community will accept this?”

When the threat of Coronavirus led to the British government enacting lockdown measures, I figured that perhaps delving into professional identification might make sense, especially if medication was going to factor in… because I’d be home, if I needed to phase off of my existing Duloxetine (which is notorious for leading to significant withdrawal so needs to be reduced very gradually) and get used to a new medication, I’d rather be in the controlled environment of my home instead of having to maintain my previous schedule of going to the office, supermarket, etc.

So I made contact with The ADHD Centre in London, who offer Skype assessments – Perfect! I thought, as I’d be on lockdown anyway and it meant I wouldn’t have to travel to London and contend with the sensory nightmare that accompanies it! I also knew I’d be getting some extra money from my company’s annual reward, so I made the appointment.

Talking to the psychiatrist was a bit challenging, in so much that I struggled to articulate the depth and frequency of my difficulties verbally; yet again, this illustrates that my ability to express myself is stronger in writing!

Fast forward to Wednesday just gone and I received the outcome letter…

“Following a comprehensive assessment, using DIVA (and DSM diagnostic criteria), backed by cogent collateral information from childhood and adulthood, the above mentioned client meets the criteria for Attention Deficit Disorder, with onset in childhood and impacting (interfering) virtually every aspect of their functioning and wellbeing.” ✨

Validation, in print, yet again.

I’m not broken. I’m not lazy. I’m not incompetent.

I’m neurologically different; even more different than initially thought.

So, there you have it! What this means for my blog, Facebook page and Instagram account (because for some weird reason Twitter & Facebook don’t seem to be talking to each other anymore) is that I’ll be broadening my scope to include ADD/ADHD elements, as well as any pertinent mental health aspects. I’ll also be adding “& ADD” to my Facebook page’s title; this is not being exclusionary to those with the H in ADHD, but because my own dx is sans-H. 😄

Thank you for your continued support, and I hope that by adding this aspect to my advocacy scope, I’ll be able to help more people in a similar situation. Certainly for me, validation has been invaluable and I aim to provide it wherever I can. 🌸✨

(n.b. where I’ve used the cherry blossom to denote my autism, I’m going to be utilising the sparkles for my ADD in relation to my “Ohh look! Something shiny!” disposition. 😉✨)

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. 🙂 🌸

Facebook Toxicity

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. 🌸

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.  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.  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. 😥

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. 😦