Etsy and Excuses

Picture shows a hotrod car parked on a gravel driveway — *Daughter’s prom carriage*

So, it’s been a while.

Yesterday’s post doesn’t count, it’s actually about a year old. I needed to add my blog to a job application, and realised half the photos were missing. Seems about right.

How to sum up the last 9 months? What’s the phrase, ‘There appears to have been a struggle’.

Menty Bs aplenty, not all of them mine. Lots I can’t discuss, lots I can’t remember.

Burnout. Brain fog. Bumpy roads.

Sounds like the title of a self help book, not that the world needs any more of those.

Things I can share:

I am Officially Autistic. As if we were in any doubt. 😂 But it’s affirming to know I’m not a crap horse, I’m a zebra.

Daughter sat some GCSEs and made it to prom. There was plenty of doubt that would happen, when we weren’t sure she had a school place for Year 11. I am indescribably proud, but also exhausted like I’ve been in labour for two years. We’re now at the start of a new – equally exhausting but also exciting and positive – chapter, as she starts her hairdresseing apprenticeship. Assuming we can find a college that doesn’t cancel its course and not tell us.

Just a wee bump in the road. 😂

I’ve started an Etsy shop. All those friends who told me to do it have finally won. I haven’t sold anything, so I’m running at a loss, but it looks pretty, and I have an excuse to paint and make videos for my Instagram page.

Expect to see posts of art and not many words for a month or two. All my words are going on cover letters and job applications at present.

Um. More positive news? My kids are mostly happy, we’re keeping pets and houseplants alive just about. I’ve taken up tame swimming (like wild swimming, but I pay to use a little lake, rather than risk E. coli in the local river!) I’ve read some great books. I’ll share a few.

That’s about it for now. Just checking in really. Waving not drowning.

How are you all?

Fancy a coffee?

Show Yourself

It’s no secret to anyone who knows me that I love a Disney movie. The stories are clear but still complex, the language accessible but not dumbed down. Relatable characters with flaws, and of course awesome belting songs. Not to mention a happy ending full of justice and redemption.

One of my favourite movies of more recent times is Frozen, particularly because the happy ending isn’t reliant on the girl being saved by a man. Even better, it cleverly turns the traditional story on its head with a twist that blew me away the first time I watched it.

Rather unusually, however, I preferred the sequel. If I relate to Let it Go, and really who doesn’t? (I even wrote a parent version), the song that hits me hard these days is Show Yourself.

If you’re unfamiliar with the Frozen story, the main protagonist, Elsa, was born with a unique and frightening power, and ends up hurting her sister because her family don’t understand it and so can’t teach her how to control it. She is told to “conceal, don’t feel, don’t let it show”. When that mask slips, she becomes an outcast, and only her sister doesn’t give up on her.

In the second movie, Elsa is content surrounded by the few people who love and accept her, but she still feels different. She still feels she could be more. She is pulled by a voice, a sense of yearning, but is scared she’ll lose what she already has.

In the end, she has no choice but to follow the voice. And in the song Show Yourself, Elsa finds the source of the secret siren she has sought for answers.

I can sense you there, like a friend I’ve always known.

During the song, the spirit of her mother shows Elsa that she herself is the voice.

Show yourself, step into your power,

Grow yourself into something new.

You are the one you’ve been waiting for.

I’ll be honest, I get goosebumps every time I reach this part, although I only recently realised why. I feel like it’s my song, and the song for anyone who grew up feeling like they didn’t fit. Like they had more to give, if only they were given permission, if only it wasn’t so terrifying.

And the discovery that I am (probably) neurodivergent is that moment where I feel, “I am found”.

The more I learn about autism and ADHD, the more I understand these “cold secrets deep inside” me that are different and powerful and frightening, that make me different and often friendless, but that can be harnessed to create amazing things.

The message in the Frozen movies is that love is what is needed to control and harness the power.

However, friendships are hard for NDs to make and keep. Self confidence, self love, is even harder, when “Research has shown that children with ADHD have often received 20,000 more negative messages about their behaviour than a neurotypical child by age 12.” [Source]

It might take a lifetime, but I am going to follow the voice I hear now inside me that tells me that, while I might be different, I am not broken. I am ready to learn.

I am ready to grow myself into something new.

Just a cold

The picture shows an apricot coloured curly labradoodle dog asleep on a brown sofa

It’s just a cold, why are you making so much fuss?

I think this every time anyone in my family is ill. And then I’m ill, and I remember this is a neurotypical view of the world.

When you’re ruled by sensory difficulties, executive dysfunction, rejection sensitivity dysphoria (RSD), it’s never just a cold.

Your body stops bodying properly. It feels wrong. There’s new pain to process and you’re hyper aware of it. You can’t control it or make it stop. You’re aware of the discomfort of dry lips, weird papery skin, pressure of blocked sinuses, achy fidgety limbs, torture headaches, hot then cold then hot (which actually you’re used to because your temperature regulation wasn’t all that great to start with). Your brain loops on a single lyric or you have lurid dreams until you don’t know if you’re more miserable awake or asleep. You’re maybe thirsty but your body cues have never been obvious and then you chug a litre in one go and feel sick but too tired to pee.

But it’s just a cold. And why are you always ill, you had a cold just last month?

You’re more prone to colds because ARFID means your diet is poor and vitamins only do so much. And you forgot to drink any water yesterday, and caffeine helps you control your ADHD.

Anxiety makes it harder to leave the house and get fresh air, and you’re on the edge of burnout so often that exercise can use the last bit of resilience and actually let the germs take over.

I’ve lost count of the times a new determination to exercise more has ended with a temperature and days in bed.

It’s just a cold, why are you so grumpy, get over it.

You’re all out of spoons and sensitive to your triggers. That’s noise for me, so things like husband snoring or dogs licking become physically painful until I have my fingers in my ears and I’m screaming at the dogs for grooming themselves (not proud of that). So I try to control the noise, but I can’t, so that increases my anxiety until I’m almost hysterical. Which funnily enough doesn’t do much for the headache.

Guilt is rife because if I’m finally taking to my bed it’s because I have nothing. But chances are I’m not the only one ill, so everything falls apart and certainly no one has spoons to check I have water or am taking my meds. Which makes me sad. Then guilty. Then mum mode kicks in and I have to go take care of them, which adds another day to me shifting the darn cold.

For my son, on top of the sensory horror is the loss of routine. His day is controlled by alarms, when to shower, eat, work out etc. A day of ill disrupts all of that.

My daughter’s is food. Eating is hard, drinking water harder. Feeling poorly makes it harder to do both, so hangry turns up followed by guilt and self blame.

It’s just a cold, you’ll feel better tomorrow, quit moaning.

When you live in a world of now and not-now, it’s hard to think past the headache and inability to breathe and imagine a time you ever didn’t feel this way. It becomes easy to catastrophise, to want to end the misery. Your brain, part of it, tells you to get a grip, but your whole nervous system is fighting you telling you it’s too much to deal with right now.

Then you’re missing commitments, school, work, life, so the RSD pops up and tells you you’re letting everyone down and they all hate you and you’re a pathetic human being because everyone says it’s just a cold. You should just get up and get on. So you do, and the cold lingers, and comes back, and so it all begins again.

Are you ill again? I never get colds, what’s wrong with you?

But it’s just a cold. Right?

Caution: Builder at Work

The picture shows the side of a house with scaffolding around the chimney

I’m on week four of my new job and just about hanging in there, juggling parenting and working.

Thankfully having teenagers in the summer holidays is mostly about making sure there is lots and lots and lots of food and driving them places. Throw in a bit of laundry, cleaning, and some body-doubling for my daughter, and that’s it. It will be more challenging when they go back to school, as they will need a lot more scaffolding.

If you haven’t come across the term scaffolding in a neurodivergent sense, it’s simplifying tasks other people find very easy, to free up spoons for the essential or more difficult tasks.

When I went to see my son’s head of year to talk about reducing his timetable, I was given a long list of all the reasons why he was thriving at school and didn’t need any accommodations: He turned up to class on time, he had all of the things he needed to learn, he remembered all the ingredients for his food tech, he was always smartly dressed. These are all things that I put scaffolding in place for, to allow him the spoons to get through the day.

He still comes home exhausted.

For an average teenager, I would be encouraging them to weigh out and label their own food tech ingredients, make sure they have ironed shirts or that their laundry has been done. I would tell them to find and polish their own shoes or put together their own PE kit. This would be ‘preparing them for adulthood’.

But the thing is, my son already knows how to do it all, but each tiny task takes spoons.

He also has his own scaffolding: multiple alarms to remind him to get up, shower, brush his teeth, and other things an allistic person might not even have to think about never mind be reminded to do. By the time he leaves for school, he’s used up so much of his capacity already, the least I can do is help.

Unlike the scaffolding on a building, this scaffolding may never come down. He may end up with an understanding partner, or he may need a housekeeper, or like me he might rely on AI (Alexa, Siri, and ChatGPT are my team.) These are accommodations for an autistic person in an allistic world.

The same is true in my new job. I have a reputation for being very organised, which always makes me laugh as someone with ADHD. What people don’t realise, but I’ve become much more open in discussing, is that the organisation is essential for me to have any idea of what I’m supposed to be doing on an hourly or daily basis.

I have links from spreadsheet to spreadsheet, I have bookmarks in sub-folders in folders. I have to-do lists and checklists and calendar reminders and even with all these things I still have to go through my notes every day to remember what I should be doing.

It is exhausting.

Like my son at the end of a school day, I have been crawling into bed early and sleeping late.

The analogy of the swan, calm on the surface and furiously paddling underneath, is a flippant image I use often. But imagine the swan is on an apparently slow-moving river with a very fast undertow: you would have no idea how exhausted the swan was just trying to stay in one place. Now imagine someone built a dam or a jetty to break the undertow.

In case it helps, here are my favourite tech/AI scaffolding tips:

Alexa shopping list
Alexa devices in every room
Calendar reminder to check Echo app shopping list
Alexa timers and reminders (particularly cooking pasta!)
Talking work problems through with ChatGPT
Smart watch linked to phone so I hear calls
Airpods to hear messages
Tile to find my phone when watch tells me it’s ringing
Alexa to find my keys to activate my tile

It’s so much easier for my husband, he just has Wife™. 😂

What scaffolding do you use?

Who Wrote the Rules?

A gold statue of lady justice holding a pair of scales

One of the hardest things for autistic people to get their heads around is injustice.

I noticed it first when my son was at school and he came home angry that his sports team lost a game because others were ‘cheating’. My own outrage matched his, and it took a while to realise that the cheating was in fact what I guess is called gamesmanship.

Gamesmanship is the use of dubious (although not technically illegal) methods to win or gain a serious advantage in a game or sport.
Wikipedia

The problem for autistic people is that there are so many shades of grey in this kind of behaviour, and our brains are more black and white.

In the classroom, my son would end up in trouble for insisting loudly that a classmate adhere to the rules. My son would be seen as the disrupter and get told off. The injustice of such an accusation would be awful, combined then with a feeling that he had somehow broken a rule. It was my first real indication that he might be autistic.

My daughter struggles with the unfairness of teachers breaking a uniform code that is inflicted on children because they need to be ‘ready for the workplace’. So much wrong with that! Autistic people tend not to recognise hierarchy, so one rule for teachers and one for teenagers isn’t fair. And then there’s the illogical idea of an imaginary workplace that isn’t in fact where teachers work. Or her parents. In fact, noone she knows still wears a tie to work and can’t have jewellery.

I used to think my need for fairness was a Libra trait. I am learning that it’s probably a bit more than that.

Discovering I am (probably) autistic – and how glad will I be, like my daughter this week, when I finally get my diagnosis – makes so much sense of why I have struggled to find and keep an office job.

Firstly there’s not understanding hierarchy: turns out thinking ‘if you’re wrong, you’re wrong, whether you’re an admin assistant or a chief exec’ isn’t a popular view point. 😂

Then there’s following the rules. What rules? Who made them up? Where is it written that I wear heels and don’t swear and don’t tie my hair in a messy bun? It doesn’t affect my ability to do my job. Same with laughing too much, complaining about noise, or not wanting to eat lunch with the team.

And fairness or things making sense? That’s just a minefield. Challenging that something shouldn’t be done just because it’s always been done that way is hugely unpopular. But if you do what you always did you get what you always got.

Needing to know WHY is another no-no apparently. But if I understand why a project is urgent, where it fits in, I might be able to deliver it quicker and change a process so it’s not urgent next time.

Right now, all these things are very much in my mind, for reasons I can’t discuss. It’s making me very sad, and I need to move on. But a combination of injustice and something just not making sense has caught my brain in a loop, trying to comprehend the incomprehensible.

It’ll pass.

In the meantime, if you have an autistic person in your life, and I hope you do as we’re pretty goddam awesome, try and appreciate their strengths even if it makes you uncomfortable. They might just fight for you with everything they have to make your world a better, fairer, place

RSD: A really serious disability

https://cdn.pixabay.com/photo/2019/09/30/18/41/golan-heights-4516524

Part of healing from burnout for me has been having the space to realise how damaged my relationships with my family are, after the two years of neglect. Neglect, because I have been pouring all my energy into negotiating the even more complex relationships that a job brings for me.

My neurodivergence comes with massive empathy wrapped up in a complete inability to read people, and a physical discomfort when I get it wrong or hurt someone. What could possibly go wrong?

Let’s unpack that.

I care.

I can’t just go to work and have colleagues. I care about them. Let them in. Treat them like family.

It’s not always a good thing, in an office. Lines get blurred. Piss me off, and I get upset, angry, mean. I will literally do anything to help the people that come under ‘work family’ but if I feel betrayed or let down, I hurt. And lash out. Or I drown in self doubt and believe I have to quit because I just can’t do it. I think my boss talked me out of resigning at least every couple of months.

It’s no wonder I have only managed about 10 years’ proper employment in the 25+ years since I left school.

Because, together with the feeling-everything that makes me overly-emotional comes the inability to read people. I mean I am really bad.

It can occasionally be useful.

In the past, I haven’t noticed when blokes in the office have been trying to hit on me until they make a drunken move at an office party (and then I am shocked.)

But it also means I can’t always read sarcasm. I can’t tell if someone is tired/busy/sad/distracted or actually mad at me. And my default belief is that they hate me (more on that below).

Since I realised I’m AuADHD I am more aware of it. I will ask for clarification, from the person or a neutral third. Even that is dangerous, though, as it comes close to gossiping. And you have to trust that the other person you’re speaking to isn’t also going to misconstrue, because of their own potential neurodivergence.

It’s a minefield.

And for me – and apparently up to a third of people who are Autistic / ADHD – that minefield is armed.

Enter RSD.

RSD stands for Rejection Sensitivity Dysphoria. Like ADHD, the acronym hides the depth of the iceberg. ADHD doesn’t just mean ‘oooh squirrel’. And RSD doesn’t just mean you’re a bit sensitive to criticism, poor wee snowflake, build some resilience.

For me – and I can only talk for me – it means pain. Broken relationships. Hurting people I care about. Losing friends. And did I mention pain? Actual physical my-life-isn’t-worth-living pain.

If someone tells me I am wrong about something, or that I made a mistake, my flight-fight kicks into overdrive. My ears start ringing, my pulse quickens, adrenaline floods through me until I fizz. A knot of tension tightens in my stomach and I feel like I’m falling backwards into a dark place. It’s not dissimilar to a panic attack (or, if you haven’t ever had one, to being uncomfortably drunk.)

I might lash out, depending who has said it. And if I’m with people I love, there’s a strong chance they’re neurodivergent and also RSD, so the exact same process then happens to them. And I can see they’re hurt. So the RSD ramps to the next level, because not only am I wrong (a horrible thing) I am also evil for hurting them. I don’t deserve to exist. Depending on the severity of the feeling, I can get suicidal thoughts.

At that point, flight-fight expands to include freeze or fawn. So one of four things will happen now, all out of my control.

Yell
Leave
Go mute
Apologise endlessly

None are conducive to healthy relationships, especially if the other person a) doesn’t know what’s happening and/or b) is experiencing the same thing.

Eventually the physical reaction will fade. That’s when the real pain starts.

The racing, intrusive thoughts. The need to apologise, explain, beg for forgiveness. The overthinking. Replaying, trying to understand. Knowing I am overreacting but being unable to control it.

And the echo can last decades. Waiting for my brain to retrieve it at my lowest moments. Stupid incidents from age 16 still make my ears ring and my pulse race at 2am. And still my brain will actively seek those memories out and replay them. Stupid brain.

It’s no wonder I don’t have many friends, or that I was reported more than once at work for upsetting someone in a meeting or email.

Because the passion and energy that makes me good at my job comes from a need not to fail. That perfectionism I always put on my CV? Turns out it’s RSD driven. If I always deliver, on time, above expectation, no mistakes, you have no need to criticise me. The RSD beast lays dormant. Unless you tell me I am overdelivering and that’s why I’m in burnout. You’re trying to help, but it’s a criticism and so it triggers the fight-flight. (Sorry, boss!)

Knowing about RSD has helped. I have dropped off calls when I felt the adrenaline in overdrive. I’ve walked (stomped) round the building a few times to calm down. Sat in a toilet cubicle and sobbed.

But if everyone else around me has no idea, I just look hysterical, overly-emotional, unstable, or plain out of order. And that’s at work.

In a house where 3/4 of us have RSD, and getting it right matters so much more, but we all feel more. Well. Exhausting.

I recently read a great post on RSD on LinkedIn https://www.linkedin.com/posts/adhd-asc-dyslexia-family-resources-belgium_rsd-neurodivergent-rumination-activity-7132409562745204736-OMQV

It includes this checklist:

Do you often feel intense emotional reactions in response to perceived or actual criticism or rejection?

🔹 Can seemingly minor feedback trigger a mental tail spin or emotions and thought spirals?

🔹 Do you have trouble containing your emotions when you feel rejected and your responses may be disproportionate to the situation?

🔹 Do you experience #rumination and perseveration and are unable to let comments go?

🔹 Do you frequently engage in people-pleasing behaviors to avoid potential rejection or #criticism?

🔹 Do you feel highly sensitive about other peoples opinions of you?

🔹 Are you prone to high levels of self-doubt, low self-esteem, or negative self-talk?

🔹 Do you find it challenging to navigate social or professional situations due to the fear of judgement or rejection?

🔹 Do you at times feel constantly attacked and on edge?

🔹 Do you avoid starting projects, tasks or goals where there’s a chance of failure?
Kate Halpin

I tick every. single. one.

Imagine carrying that all the time with no one knowing? Imagine finding out there is a name for it and you’re not just a failure or a terrible human being?

There isn’t a cure. Only knowledge. Therapy. Being open.

We need to talk about RSD, especially at work. Look for the signs in others. Support them, come up with strategies or signals to help in a moment of crisis. Don’t judge. We’re not snowflakes, we have a mental condition.

And, most importantly, find a friend that tells you it’s the RSD talking when you’ve left all your work WhatsApp groups because you think everyone hates you.

And then have the bravery and humility to ask to be let back in 😊

Checking In

It’s been a while since my last post. It feels like forty years. Given the nature of Invisible Illness, I thought I’d better check in and say I’m still here, just about.

You see, after my last post, a follower and friend messaged me to ask if I’d ever considered I might be autistic. Strangely enough, about a year ago another friend shared this image on Facebook on autism in girls, and I commented how that was me as a child. But I couldn’t go 42 years without knowing something like that about myself, surely?

Erm, yes. Turns out I could. I’m still awaiting an official diagnosis (not a priority for the NHS) but my GP concurs that I show all the traits of high-functioning autism, what once would have been called Aspergers.

It was like being given glasses for the first time, or maybe a tiny bit like finding out you’re adopted. Suddenly life made sense. Turns out 42 is the answer to life, if not the universe and everything.

I’ve spent the last six weeks reading everything I can and replaying my life through this new filter. Exhausting but incredibly enlightening. All the parts of me, of my life, that I thought were broken were actually a result of me being ‘neuro-divergent’. The phrase ‘normal, not normal’ springs to mind. Mostly, for the first time in forever I don’t feel alone. (Go on, who now has a Frozen song playing in their head)

There’s a whole post to write on female autism and why it goes unrecognised. A second on high-functioning autism and why that’s a misnomer. A third on realising other family members also show traits, and the stress that’s put on our family unit, while at the same time bringing hope. Another on having a (suspected) autistic child and helping the world understand them without making them a victim.

I don’t have the energy to write any of them right now. If you’ve ever had therapy, or even a soul-bearing heart-to-heart, you’ll know how draining that is. Re-playing my whole life, all the complicated lonely anxious mess of it, and picking out new patterns has left me with an exhaustion I haven’t felt since having two babies under 2. (And realising some of those horror years of acrimonious self-doubt might have been avoided if I’d realised two out of the three of us were not neuro-typical is heartbreaking).

Anyway, it’s all good. It can only get better. We can only get stronger. There might not be a lot of NHS support, but there is plenty from friends living the same life.

And it turns out that most of the girl protagonists in my children’s books could be considered on the spectrum, so I can thank them for helping me make sense of my differences, even if I didn’t know it at the time.

More than anything, I am grateful beyond words to the very good friend who messaged with her suspicions about my place on the spectrum. There is a strong chance she literally saved my life.