NeuroBetweenity

My very happy gluten free sourdough starter!

This is #2 that I fed earlier ready to bake tomorrow. I didn’t expect this much “enthusiasm”! Thankful I checked before bed so it could be safely put into the fridge overnight next to #1 - who I would have expected to grow like this. Goes to show that there’s an underdog in surprising places

(I share my own enthusiasm because a gluten free starter takes more effort than a standard one.)

Message to a friend -

TL;DR... I find conversations that turn like that too much... And I think our friendship is worth preserving so this is my attempt to help prevent repetitions.

Maybe you won't like this and I will not be continuing the conversation tonight. To be honest, I am not quite sure how this will be received... But, as I said, valued friendship, so I will say it anyway.

I had a big realisation after that message clarifying what you experienced earlier. And I am sharing because I believe it is relevant.

Whilst I do sincerely apologise for hurting you earlier, to avoid the same volatile miscommunication in the future, I need you to accept that sometimes I need a bit more processing time during conversations than I think I realised, or that you might expect of me.

I am very quick thinking re subjects that are "mine" - that I know or am prepared for.

But when I am blindsided, (which includes unexpected tangents) or when I miss or misunderstand a word a tone or some part of the conversation, (as happened earlier), my cognitive processing is often too slow to successfully avoid the escalation that happens like it did. It's also a little different to typical in that the words & the tone + syntax etc do not always match. Especially if I have lost my place in the conversation. So I have no idea what tone you heard earlier, but I am pretty confident (based on how the convo went) it was not what I meant.

The result is that in those moments, I am left confused as to wtf has happened as I try to catch up, & well...it just gets messy because it appears to you that I am making excuses, or whatever it appears like at different times. I also process verbally (or in writing). Often many words are literally me thinking aloud in order to make sense of what I am thinking.

In this instance, there were two slightly but very significantly different threads of convo happening. It was only when you said something in a different way, & then I asked that question that "ended" the civil (ish) convo, that I finally twigged about what you had meant. Before then, that was not something that connected in my mind. (Saying the same thing in a different way matters a great deal sometimes - more than for most people.)

Now, you can either believe that I am making excuses just now by saying this...

Or you can (& I hope you do) accept that I literally mean that it literally took those minutes for me to process what you had been saying. Usually I am allowed time to process either in words or just time, and I I never explicitly connected the dots re this type of convo with you.

If the topic is not triggering for you (or me) then there is time for me to catch up with no harm done. But if it feels like I am personally attacking (?) you, then obviously there is no time for me to catch up & you are left believing what you wrote above. And apparently that is not the first time you have genuinely believed so little of me.

The jist is that I do need the benefit of the doubt sometimes because communication easily gets tangled between different neurotypes (using the broader definition that includes us both).

When you cannot cope with me processing (too slowly), then I need you to disengage because there is precisely nothing I can do to short cut or change that process; just as there is precisely nothing you can do to avoid feeling triggered AF... Such are our brains & nervous systems!

What you wrote above is not even remotely what I said earlier, and I completely appreciate that it is absolutely what you heard. Both statements can be true.

Anyway, I hope you can appreciate that I have shared this in the hope that clarification & understanding can create more peaceful conversations.

Over the few years since my identity changed to include being autistic + ADHD, I have come to believe that our sense of identity deeply underpins our functional capacity as neurodivergent people, especially when we have been diagnosed later in life.

I actually believe this also holds true for people of all neurotypes. It is I just that the realisation really hit me once I discovered that I wasn’t “the same” as most of the people in my life. We all need some sort of catalyst for the realisation to become felt & embodied rather than just an intellectual fact that we “know”.

Now I realise that this sounds like a statement of the obvious, but it is often said (by wiser people than me!) that our identity is critical to the quality of our lives.

Until a few years ago, I would have said (& believed) that if I “worked on this skill set” (like executive functioning skills - lets say my organisational ability at home) then my identity & sense of self will shift for the better, because I have successfully worked on myself, bettered myself…”like an adult does”. I think that is true for many people. As they work on themselves, they feel & think better of themselves. Ergo, according to this argument, there is a shift in personal identity.

Before my diagnoses in 2021, I identified as a very damaged, f*cked up person. Lots of damage, both physical & mental. Much of this was “my fault” because…”personal responsibility”. And that which was done to me, over time, also became “my fault”…because “as adults” aren’t we supposed to learn to manage our trauma, mental health, physical health etc? Earlier still, as someone managing autoimmune disorders + PTSD etc, I identified as someone with lots of problems functioning successfully in the real world. I certainly never achieved the level of success that had been expected of me, either by my parents, my professional peers and especially, myself.

All of a sudden, (because my diagnosis happened over a relatively short space of time) I “became” an autistic + ADHD person…

Now cognitively, I knew that this means I operate with a different set of neurological systems to the norm. I knew that many of the same standards are dramatically unfair to me…

…And yet I felt…like the same f*cked up person…just a f*cked up autistic + ADHD person…

My sense of identity still deeply sucked. (Too many years spent berating myself, maybe?)

And my functional capacity in my day to day life was still lousy.
And that made me feel ever increasingly inept because if I couldn’t improve now that I knew what the “problem” was, when would my life change?

It wasn’t until my sense of identity deeply shifted to include feeling ok with how much I could not do, that I began to feel better AND I also began to perform better in all areas of my life! Now I know that many successful people talk about having a mindset for success, but my big shift was all around the simplest of things! The most basic executive functioning tasks felt like my greatest achievements. It felt different to this “success mindset” and it still does.

It is a transition that has taken me about three years so far, and I don’t pretend to have totally “made it” to complete self acceptance. I can say with absolute certainty that I like this place a whole lot better than were I was back then!

I love the imagery and meaning around the concepts of liminal spaces and liminality! The in-between worlds all around & within us. 💕✨

To me these are like a heavy early morning or night time fog where the world is shrouded and I cannot be certain what exists - I will see - when the fog lifts (often when the day dawns). Maybe I can see street lights shining through the fog but their detail (shape, light etc) is hidden & transformed and they could appear in many different forms when the it lifts. The shapes they illuminate are even more unknown whilst the fog sits on them.

This is quite like my transition from ‘believing I was neurotypical’ to ‘knowing I am, & existing as, neurodivergent’. Most days I am never quite sure how I am going to exist until I am in the moment. I prepare & practice but more often, the reality does not go as I planned or intended or believed it would.
It felt like how I imagine Lucy Pevensie must have felt when she stepped through the wardrobe and into Narnia where the world was oh so familiar yet different, and also so wonderfully amazing. I loved that book & others like it as a kid - books of magic, transformation, difference, acceptance.

Places that felt as if I could exist as myself throughout a time when I was losing touch with myself because I was not allowed to be her.

My childhood fantasy world of Narnia, ‘Smurfland’, places where unicorns, mermaids, centaurs and tiny talking dogs existed! (Not all at once, you understand - obviously many of these belonged to different worlds! I had a lot of imagination, and the time & space with nothing but that to keep me company.) As an adult, I think the closest ‘world-experience’ to capture these feelings would have been the world of Harry Potter (however controversial JK Rowling has become). Although authors like Jane Austen manage to transport me to versions of life that feel reminiscent of these other works. Van Gogh feels like this!! All of my favourite art, literature & even activities feel evokes these wonderful feelings - a lot like bliss!

‘Chicken goals’ to get a green dozen!! 😆💚

Really long post that would be better as a blog if I had a page up & running yet! But I don't & I need to get it out of me even if it is into an as yet empty void.
TL;DR my experience of a doctor appointment with my usually good doctor. I think he is still good and to his credit, he is open to information about autism. Or at least, I think he is.
______________________

Note to my doctor…
When I come in for an appointment what you see is not me as myself.
It is “high level masking me”. It is the version of myself that I have learnt is acceptable to people around me.
But it is not “me”. Not the honest me with no pretence.

You are a good doctor - one of my favourite doctors I have ever had. Clearly ADHD. Open minded. Obviously intelligent. Quick of mind, easy to talk with. Talks with me, not to me. I am one of those complex medical people…lots going on…and you keep up pretty well.
Usually I can go and not be as tightly masked as I normally need to be. Today, I learnt that it is most likely that I have been wrong in this feeling. I think I have almost certainly misunderstood previously, and probably caused offence even though I have had literally no idea about it. Until today, you never clarified what I meant and I remained oblivious to what I allegedly implied…(I didn't imply anything - far too literal in my Autistic brain to purposely imply anything!)

Having prepared over decades of medical challenges and appointments, I know what doctors want and what they need. I work hard to hold up my end of this arrangement and I do not always get it right. As right as I need to get it. I did think I was doing a little better this time…

When I identify the need for an appointment, I book it with your admin staff. If in doubt about the time required, I disclose the reason to them. They usually do not want to know & sometimes they don’t listen. For them, I guess this is oversharing & they are conscious of confidentiality & also of their own needs. What they miss is that I don’t know what type of appointment I need so I share to enable them to decide this. To avoid booking too short, too long or at the wrong time.
That appointment gets put into my calendar including notes about what it is for & what I need to do to prepare. Do I need to print anything to take? Do I need to sit down & write notes for it? Notes about what?
I do the notes as best I can given I do not know what questions I will be asked.
Nevertheless, not knowing, I “practice” for potential questions. What might he ask? How will I answer? What distractions might come up? My doctor is ADHD so distractions do come up…

Check the details the day before. Alarms for reminders have already reminded me and there are more to come before the appointment itself.
Try to sleep…

Check the day of.

How am I getting there?
When do I need to leave?
What do I need to do before that appointment?
What else do I have scheduled or planned for that day?
What is my son doing that day?
What do I need to eat?
When do I need to take meds?
What do I need to do with my dogs & birds before I leave?
What is the weather like?
Should I close windows or not?
What do I need to wear?
Do I need to take a water bottle?
… And so on …
The day before. The day of.

Have I had a coffee yet?

Pack iPad for notes and paperwork if needed.
Answers to questions I have not foreseen.

Pack ReMarkable for note taking.
Or to read in the waiting room. Better battery life.
Maybe pack other paper reading material…just in case… (Of what, I don’t know. But preparing for “just in case” is reassuring if nothing else.))

Pack paperwork between the iPad & the ReMarkable. Otherwise it gets crushed, destroyed & lost. Usually in that order but not always.

Phone.
AirPods.
Water bottle.
Pen & paper… Backup note taking.

Check & re-check.
Inevitably late anyway…

When you see me ramble during an appointment; if you hear me comment on the face you might have made at me; if I tell a seemingly irrelevant story with too many words and maybe no apparent point…
It is because you have asked me a question that I have not prepared for.
My brain is rapid-fire going over all of the things…

I don’t know what your face means…
I see “that type of face” so often and noone explains what it means so I never know and I am left dangling, panicking…

What are you asking?
What does that question mean?
What answer do you need?
What details are relevant and what does not need to be said… This is perhaps the hardest part… To me, All of it is relevant - or it might be. I don’t know.
I don’t know what is relevant.
What happens when I get this wrong?
What consequences for the wrong answer? For the right answer?
How do I stop rambling?
What is your face doing anyway…? Clearly what I am saying now is not correct or maybe not needed or maybe offensive…
And the appointment is taking waaayyy longer than the scheduled time…
I still haven’t even asked for the script I also need. I never do get to it during this appointment.

You have misunderstood my answer…
You are apparently displeased with my answer…
Apparently I offended you somewhere here…

You don’t see the panic inside of me because I don’t display it on my face in this context. This part of my mask remains heavily fixed - immutable. Almost inscrutable expression. (At least if I was neurotypical, I would be told my expression is inscrutable. Instead, I have the more pathologised “flat affect”...)
So you don’t see the distress or the confusion.
Perhaps - as on this day - you suspect you have offended me. You assume this because you mistake what confusion I do show, to be tension, offence, anger.

Honestly, at this stage, I do not know what has just happened.
For once, today, I say precisely this.
I do not know what information you need or why you need it. I no longer know what you need of me.
I simply want the medical certificate form completed. There was nothing new to add.

Today, because I disclose my confusion, you ask if I believe you are neurotypical. I don’t - clearly ADHD as we have laughed about previously. I don’t get the hint that you’re making here…
Today you believe that I am questioning your competence… Your intent and your capacity to understand.

What you don’t see is that I stopped knowing what you wanted of me a while ago now. For minutes, I have been panicking, distressed and increasingly confused about what is going on and what is needed of me. But you do not see this.
You don’t understand that I do not imply things. I am not even sure if you believe me when I say this…

So, once again, it is up to me to apologise for the confusion - for the miscommunication. Despite your assurances that I don’t need to apologise just for being myself, I continue to apologise, to assume responsibility for the emotional and cognitive load of communication between neurotypes. I don’t even realise until well afterwards that this is what I did.
It is Always what I do.
It has always been my responsibility to do it and fifty years of this is a hard habit to break.
(However, I deeply appreciate your attempts to meet me part way.)

What I know right now is that I have somewhere, somehow, said the “wrong” thing…

Ahh… You want me to show you progress? Progress I have made whilst not working?
And despite your best of intentions, what you mean is neurotypical or at least allistic, progress.
Because Autistic progress…it doesn’t look like “progress” should look.
There have been no obvious signs of progress. I disclose no signs of “progress”. And I do not know how to communicate this to you. I do not know what “progress” needs to look like in order for you to accept it as legitimate proof that I am not stagnating or bludging… I have said that I have made a lot of progress and I can see that you do not believe my words.

People - other people - do stay in a rut. They get into this position of not moving forward, of staying stuck, of backsliding. And I have been there myself - back when I “was neurotypical”...
And you say this, ask this, out of concern - medical concern.
Well meant. Best of intentions.

Needing and expecting me to live up to allistic standards that are unachievable.

I couldn’t say this in person, but this is what progress looks like for me just now…

I turn up to psych appointments and I talk.
Gradually, I increasingly disclose of myself. Please understand that this is something I have been “trained” not to do - never to do. Honest disclosure means nothing good will come of that interaction. 50 years of nothing good comes from interactions that involve me disclosing myself. Perhaps not every single interaction has ended this way but there is not one I can remember that didn’t.
In those psych appointments, I am addressing the trauma that brought me there. There was a lot of debris to clear before addressing it, and that took time.
I turn up to rehab appointments and I engage. Although I mask so highly that really, they are almost complete fabrications of my reality... My interactions with pretty much everyone are largely fabrications of myself.
I looked for support workers. I met and spoke to one.
She might begin next week. 14 months of NDIS funding and this is the first support worker I have met and tentatively engaged.
I have an OT appointment booked. It's been months since the last OT ripped me off with false transport charges.
I do my uni. Always overdue, but I do it. I learn. I struggle to deal with the constant presentation of people like me as deficient in so many ways…”sub-human” to quote one paper.
I work. I can’t work and be paid for it… That’s a psych conversation right there and I have told her this.
I don’t force myself to be someone else.
I lost my family. All of them except for my son who lives with me as a dependent. I Iost them because they dislike who I am. They liked who I masked as, but they don’t want to know me as myself. There is grief and agonising pain in this and I did it anyway.

But when you see me you don’t see this.
When I mention any of it, you still don’t see it because I cannot talk about this and feel it at the same time. Truthfully, I don’t think I feel it in the way that you believe I “should”. There is pain (& so much more) but it is not organised in the way I believe I “neuronormatively should” organise and express it.
Grief for me is so much slower.
And you don’t want me to disclose the details because that is not your job. So how else do I explain “progress” to you?

I leave feeling that today my mask has slipped too far and for my own survival, I need to fasten it still tighter again next time. And never let it slip…

I leave the appointment. You move onto your next patient and probably don’t give me another thought.

I leave numb and upset all at once. I don’t know what I feel. I don’t move on. I come home, numb myself with some food and tv. Then I write. I journal to process what happened and what I feel and think. My thoughts and feelings are stilted and jarring. I have uni to move on with - assessment due date looming… Unless I process and write, I will be unable to move on. Even if I process and write, I will return to this after my assessment is completed. Moving on is very difficult, especially when most of what has happened remains unknown.

I am autistic & ADHD. I have other diagnoses including GAD, PTSD, cPTSD, depression, autoimmune disease and no thyroid.

Now you already know too much about me!

Recently I read a particularly cruel post written by a neurotypical mother of autistic children & married to an autistic man. She was so heart-shatteringly cruel; beginning with “Asperger’s is…”. There was no kind word spoken to or about any of us. She was the “hero” of her family.

It upset me more than I can describe and the emotional effects don’t dissipate quickly or easily. I worked hard to reply and then didn’t.
Worked hard to reply in a different way…and then didn’t.
After many more words than I eventually shared, I did reply.
I am still shaken by the entire experience.

My son asked me why I continue to share my experience (in various ways) when it upsets me so much.

I asked him if he remembered the bullying he experienced at school years ago & the far worse bullying he witnessed other kids subjected to.
He remembers.

“How would you feel if I had not spoken up for you when you were too young to do so for yourself? How might that situation have turned out?”

“Not good…” began his reply. We continued to talk -

And I think of these neurodivergent children whom I know.
What might their experiences be if no one speaks for them?

I think of how I am consistently penalised simply for being autistic. Even before anyone knew I am autistic, I was penalised for my autistic behaviours. Even now that people know I am autistic, I am penalised for being myself.

I have lost friends, family, opportunities and belief in myself.

If I speak, others might avoid all of this.
Or much of it.
Or maybe only some of it.

Change happens when people speak.
I have changed because of the many neurodivergent voices who spoke to me as I learnt and experienced the whirlwind transition of “broken neurotypical” to “perfectly normal neurodivergent” person.

And whilst I now take steps to protect myself, I will speak.

We’re different & different is bad. It’s a paradigm shift that people won’t attempt to make.

I’ve had this convo today after an utterly horrific post this morning (in a paid group of all places). My voice - being different - was silenced. The other voices - commiserating with the poor woman suffering with an Asperger’s family (“because Asperger’s is not autism - she’s old school, don’t argue…”). Perhaps the worst post I have ever felt.

Oh my but I felt it for the rest of today!

Honestly, I think it’s that simple.

When we “choose” to not conform to the unachievable neurotypical standards laid out, we become rude, angry, unfeeling, obstinate, etc etc etc ad infinitum… Call it anything bad!

Call it anything but what “it” actually is.

For starters “it” is us - we are equally as human and valid as anyone.

We feel but express it differently.

We think and do it in wonderfully different ways.

We move so differently!

All the things. Differently.

Such an easy concept really.

So difficult for so many to grasp.
And even harder for them to tolerate.

Merry “what-ing” Christmas to me…

Today began as does any other day during school holidays. I woke up. My son slept on…

I got into my morning coffee routine with boiled eggs + toast, after tending to dogs, chooks & finches. Routine. I like routines. They are happy, easy, safe.,

My son got up & the day carried on with me reminding him that he had two hours to get to work on time. He did get to work on time! He’s a cool kid, my son. Exceptionally competent.

And I carried on as per a normal day at home.

To be honest I have no idea why people spend so much effort on Christmas. I get it - intellectually I understand the whole business. But emotionally & logically, I do not understand what the point is. Why not show someone you care at any time of the year? Why save it until 25 Dec? Makes no sense really, if you think about it. There are posts about this every year but how many people actually do it? Ignore Christmas that is?

Anyway… I took a phone call from a friend who can take on my favourite chook - he’s a young rooster - because I cannot keep him. We live in suburbia… He would need to go from a backyard full of grass, other chooks & meat daily…to 3mx3m & kitchen scraps with no meat… He leaps more than three metres each morning when he leaves his tiny overnight coop! How will he react to effectively being in chicken prison? Most people won’t understand, but he is my chicken friend. He snuggles into me when he comes to back door several times a day…

Also today, my family of parents + three sisters & their partners… They have not acknowledged my existence since my mother left here saying that I “talk myself into” being autistic… They are exchanging perfunctory Christmas wishes in our “family” group which has been silent for a good couple of months now. It is always perfunctory…never real…

I received a message from a PDA facebook I applied to join. Something about another group which might be of interest to me… I joined that other group & replied because at that moment, I had not idea what they wanted of me & frankly, trying to figure out what I am supposed to do is just…so…overwhelming…and…exhausting…

Can someone please just tell me what I am supposed to do in order to be accepted, loved, not rejected… Because honestly, I am tired with trying to figure it all out. What…do…you…want? What am I supposed to do? What makes you happy? Preferably without killing myself…so to speak? By which I mean what makes you happy without tying myself in knots that I simply can’t untie?

The facebook message was the straw that broke me today. It sounds rather pathetic, even to myself.

I am simply so tired of not knowing what to do in response to the world around me.

Yesterday, I had been invited to friends’ place for lunch. I have known them for years now. 20 odd years. Seen kids grow up. They have taken some time to get used to me being diagnosed as autistic. One kid is an outright alcoholic. Sad really that he teared up at my honest answers to his questions. Again, I am faced with the question of how to react to people because I suspect that his mother will be upset when she learns that I answered the exact opposite to her desires… What am I supposed to say?

The answers to questions seem so obvious to me.

3x3m is cruel for 10 chickens,
Being drunk, drugged, losing teeth + a black eye (because he was drunk + on co***ne) = a bad example to set for your son.
Working away from home and visiting fortnightly or monthly is better than that.
Family should accept me for who I am rather than condemn me every time I exhibit autistic traits…

And the facebook group just tipped the balance in favour of tears… Thank you group admins who messaged me out of kindness. You are no doubt slightly confused about my reply…Or maybe, being an autistic kind of group, you get it because you have seen it before!

PS. My kid got home from work & thinks I am teary over my favourite chicken… He also isn’t sure that 3x3m is fair… He also doesn’t want to kill his favourite chicken…

Life can be hard sometimes

Love this!!!

And it is so true that adults also need support to maintain balanced capacity.