Being Lost — Understanding Autism/ADHD

I’m not always good at sharing how I feel.

My fellow ‘tistics know the score. It’s a whole thing. Trust me.

Sometimes it’s because I genuinely don’t know how I’m feeling. We’ve talked about that before. It’s called alexithymia and it suuuuuucks.

But sometimes I do know how I feel and I still don’t share. Maybe, it’s even more true to say that I can’t share.

And when I want to share something I’m feeling and can’t, part of me wants to say something like, ‘well, it’s none of people’s business’ or ‘I don’t want to overshare’ or ‘I don’t want to be a burden’. And maybe there’s something to that.

But, if I’m being honest, when I know exactly how I feel and don’t share it with my loved ones, it’s usually because I’m embarrassed.

Oh, and if you’re neurodivergent (and knowing my ‘audience’, you probably are), I’m sorry for the upcoming AuDHD-‘splaining. This is something we go through a lot as spicy brained folks and I felt like sharing. I’m not claiming to have discovered anything here.

So, back to our original question, why do I feel embarrassed to share my current feelings?

Before we can talk about that, I want to explain something I experience. I’m going to call it ‘The Space To Be Broken’

The Space To Be Broken

When someone has a physical disability, it is usual (though, admittedly, not as usual as it should be) that people make allowances for their difference in abilities.

If someone has arthritis and is experiencing a flare up, friends, family, employers and doctors usually (should) understand that this might mean that that person is not as capable that particular day as they might usually be. They might need to rest. They might be stiff. They might be sore. We give them the time they need. It’s common sense.

And more than that, that’s just… OK, isn’t it? They have different needs that are totally logical given their condition or difficulties or whatever the most appropriate word is. People are fine with that. (Good) People usually don’t judge it. It’s just part of life.

And it might be the same with something like period pain. Or, something like Crohn’s. Or a heart condition. You get the idea.

We are most likely familiar with this idea, in general. In summary, the idea is that some folks have invisible challenges and they need grace, space and (I am not in love with my wording but hopefully it gets across the idea) special treatment. We cut them slack and are happy to do it.

I call this special treatment ‘The Space To Be Broken’.

Permission from the universe and society to not win your battles that day. Societal approval to struggle. Consensus on it being OK to not be OK. Space to recover. Space to rest. Space to be broken.

That makes sense I think.

So, now we understand the Space To Be Broken, here’s my controversial spicy hot take of the day:

I don’t think people think that way about ADHD and autism.

I don’t think we (as a society) give people with autism and ADHD The Space To Be Broken.

While we’re talking about it, I also don’t think people are generally on board with the idea that neurodivergence is something that can ‘flare up’. It definitely doesn’t feel like that’s something I hear people talking about.

I think we think of autism and ADHD as something that is at a constant level. No peaks, no troughs, no valleys.

I don’t know about everyone, but that’s definitely not how I experience it. I definitely experience flare ups of both my autism and my ADHD. It’s just harder some days than others. And I think most neurodivergent people I know would say the same.

So, given that, it’s really surprising that noone has ever said to me, ‘Sorry I can’t make the party, I’m having an autistic flare-up’. Or ‘My ADHD is really bad right now; I can’t do that for you’ or ‘I’m really sorry, but I’m too time-blind for that right now’.

And I think that’s because, I don’t think (most) people give folks with ADHD or autism The Space To Be Broken.

I honestly don’t know why this is.

It may be that folks just don’t understand neurodivergence. Or they maybe don’t really empathise. Or they just haven’t ever been told how it feels. It may be that we’re all figuring this out together for the first time (on Tiktok apparently?) and this will change soon. This could be totally new. I’m honestly not sure.

I also don’t know if it’s deliberate. I don’t know if it’s conscious. I don’t know if it’s known.

But I feel it. A lot.

I feel like there’s no space to be broken on account of my ADHD or autism, broadly speaking, especially during a flare up.

And I’d argue, that’s not great. For anyone.

Addressing Some Skepticism

On this side of the para-social ‘content creator’ dynamic, I sometimes get the sense that I’m losing people with my argument. I feel that way now. I know at least a few of you might be skeptical about what I’m saying here. So let’s address that.

There’s two (totally valid) forms of skepticism I’m anticipating.

Firstly, I can very much understand someone reading this and thinking that autistic or ADHD aren’t the sort of thing you need The Space To Be Broken for. Sure, if you’re blind or in physical pain or shitting your guts out, that makes sense. But neurodivergence? Is that the same thing?

Firstly, congratulations on your neurotypical mind.

Joking aside, feel free to talk to any, and I mean ANY, neurodivergent person and ask them about this. Ask ‘Hey, loved one X, has your autism or ADHD or other neurodivergence ever felt like you needed Space to be Broken?’ and see what they say. You might be surprised at what you learn.

Of course, my readers are usually spicy brained and they might also be similarly skeptical in the same way. I can fully understand a neurodivergent person also struggling the idea that their neurodivergence deserves such a space.

Are my struggles really that serious? Surely they’re more like inconveniences you just struggle through? The sort of thing you just deal with. Do I really deserve The Space To Be Broken?

I can’t answer that definitively, obviously. I am the authority on nothing. If I were the authority on anything, the world would have categorised soup as a drink decades ago.

So, in lieu of actual answers, I would suggest conducting the following experiment when you’re thinking about whether your own neurodivergence is something that deserves The Space To Be Broken.

Find a neurotypical loved one.* Ask them if you can tell them something a little heavy. You know, check for spoons and brain space. Be polite.

Then tell them honestly how you felt on your worst neurodivergent day recently. A flare up. The complete time blindness. Being ‘untethered’ from other people’s feelings. Crippling executive function. The aches and pains (seriously?! Why aren’t we talking more about how painful this all actually is). The inability to do what we need to do. Letting people down. Social isolation. Whatever it happens to be. You know what I’m talking about.

And while you’re doing this, look at their reactions (try your best autistics!). Listen to how they respond. Ask them how they would feel if this happened to them. Ask them if they have experienced anything similar. Ask them if it sounds like something they could struggle through. You might be surprised how they respond.

Speaking of ‘struggling through’, this leads me to the second skeptical soupçon I’m anticipating. You might be thinking, Matt, what you’re saying is totally valid and actually what you’re wrong about is is the opposite. Not only is the neurodivergent struggle real and valid and all that, but I do believe that there actually is space to be broken for neurodivergent people already.

Hmmm.

If what you mean is that there should be space, I agree.

If what you mean is that many people agree that there should be space, I think I agree with you there too.

If what you mean is that some lovely people (especially those neurodivergent or familiar with them) provide that space, I agree.

If what you mean is even that there are many neurotypical people who are happy to give that space and do, I basically agree with that.

But.

If what you’re saying is that there is generally space to be broken for folks with ADHD and autism in society at large, then I would have to disagree.

I don’t feel that that’s the case. At all.

I think my friends don’t feel that that’s the case.

And, though no official spokesperson am I, I would potentially even go as far to say that neurodivergent people don’t think it’s the case, broadly speaking.

Future Editing Matt: Holy qualifiers, Batman! Fuck it. I’m leaving them in.

But I don’t just want to say, ‘I’m right. You’re wrong. Na na, na na na!’. There is one piece of evidence I’d like to offer to this.

I have never called into work and taken a sick day because I have ADHD. Even though on many occasions, it’s definitely stopped me working. I’ll say I have diarrhoea or something.

I have definitely never called into work and taken a sick day because I have autism or am experiencing an autistic flare up.

I have also never heard someone else call in sick with either of those reasons.

When I have been a boss, noone has ever called me and asked for time off for an autism and/or ADHD flare up.

No colleague of mine has EVER come into a work and when asked if they’re OK said anything like, ‘Oh it was just a bad ADHD week’ or something.

I have heard colleagues, family and friends describe the exact quantity, consistency and texture of their bowel movements on hundreds of occasions on their return to work. I have heard about vomit, aches, pains, cuts, concussions, period cramps, broken bones and all kinds of maladies and malaises my entire adult life. But never once has anyone described their neurodivergent struggle as the reason for needing time off.

For the sake of being autistically exhaustive

Future Editing Matt: I think you might mean balanced here, buddy.

Right. For the sake of being fair and balanced (TM, C, R), there’s a few reasons this could be the case. So before I come to any conclusions of my own, it’s worth thinking about those.

It could genuinely be that autistic and ADHD flare ups are not serious enough to cause the need for absences for work. I definitely know people who feel like that’s true.

But here’s the thing. I feel these things. Often.

I am personally MUCH happier to work with a cold or the shits or something like that than try and navigate executive dysfunction or being untethered or being lost in a professional environment. These things just feel like the sort of thing that need space to me.

So I say no. Autistic and ADHD flare ups are (or should be considered to be) serious enough to require space to be broken.

OK, alternatively, this could all just be an unfortunate misunderstanding. Maybe my bosses over the decades would have been totally open to me ‘calling in autistic’. Maybe I’m worried about nothing! (That happens a lot.) It’s defintely a smart thing to check.

Yeah… I hope my fellow fantastic ‘tistics and ADHDers are smelling bullshit with this one. I do not at all feel like that’s something any boss I’ve ever had (except Debbie, she was wonderful) would have been open to hearing.

So, no. I don’t think that’s what happening either.

The optimist in me wants to say that this might all be an advocacy issue. Or maybe something like an education issue.

Sure, maybe it currently isn’t the case that autistic and ADHD folks call in sick for their experiences, but maybe it will be soon?

You know, there’s more and more space in the world for open discussion for neurodivergence. Stand ups talk about it. Teachers talk about it. Tepid bloggers like me talk about it. Maybe it’s coming. Maybe Tiktok will teach us all how to navigate this.

*exhale*

I hope so. I’m not sure, but I hope so.

Look, I don’t know why this happens or if it’ll change. I wish I did. But I do know it is my experience and the experience of people I love dearly.

It just kinda is the case. And has been my whole adult life.

The Problem of Effectively Addressing Skepticism

So, devotees of Breadtube may have noticed I’ve fallen into a trap. And it’s a very tempting trap. And that trap is trying to ‘prove’ the validity of my experience.

I think sometimes when someone is different from the majority, there’s a kind of pressure to prove what they experience is ‘real’.

People seem to ask all kinds of minority folks to prove and justify their own experiences. Folks ask trans people to prove dysphoria exists and is a problem. Folks ask neuralgic people to prove their pain. Folks ask racial and ethnic minorities to prove or justify their experience of feelings of discrimination.

And it’s tempting, as a minority (and I think the neurodivergent are a legitimate minority group), to try to do just that. Part of why I write is to do that on some level.

If I’m not explaining myself well, some common examples may include things like:

• “Even if you control for variables, the gender pay gap is still statistically real!”
• “There were trans people all throughout history. Just look at the *gestures at well known ancient society*”
• “No, ADHD isn’t laziness! If you look at the studies about dopamine addiction and…”

You get the idea.

Here’s the thing, though. I think, as do increasingly many, that it’s an inherently flawed exercise.

Because you can’t change most people’s mind with statistics. You can’t prove your experiences matter empirically. You can’t persuade someone who doesn’t feel what you feel (at all) that your feelings matters and you can’t prove that you need help with words or ideas. Usually. It’s just not an academic argument you can win with facts. The right words don’t automatically change minds. Obviously. Just look at all the stupid things people believe in spite of the obvious evidence. I mean people even believe soup is a meal and act like they enjoy it. It’s obviously a drink.

Future Editing Matt: Hey. Me here, directly addressing you as the reader. So, I don’t know why, but Writing Window Matt has decided that his ‘soup is a drink’ bit is going to be the main throughline of his artistic output. I’ve tried to cut it out many times and it seems to come back twice as strong. Like shaving a beard or beheading a Hydra. So, I’m hoping that drawing attention to it means that WW Matt feels like he’s been heard on the issue. Let’s see if it works in the next essay. Sorry, I don’t mean to interrupt. It’s just every fucking time with this guy and I want you to know that I see it too and am just unsure how best to proceed. I’m not asleep at the wheel, it just seems genuinely important to him. I’m considering the most effective action going forward. Thank you for your time.

What actually changes mind is empathy. We all kind of intuitively know that.

Which annoyingly isn’t always possible. Because neurodivergent minds work totally differently. Or at least differently enough to mean that empathy is very very difficult. It’s hard to empathise with time blindness if you just don’t feel it. And that’s if you even want to empathise in the first place…

This all makes sense, right? We empathise with the diarrhoea sufferer because we’ve been there. It sucks. We can empathise with the arthritic because we’ve all felt stiff and sore and sort of get the idea of how that might feel. At least half of us can empathise with bad cramps. We’ve all felt a migraine or bad headache and it’s killed our day.

But can most people actually empathise with executive dysfunction? Or time blindness? Or becoming untethered from the people around us?

I actually don’t think so. They sort of have to take our word for it.

What changes minds is trust and care for the individual.

I can’t persuade you that my struggles (or anyone else’s) need The Space To Be Broken.

If you don’t think they do, I both can’t and won’t persuade you.

The only thing that will persuade you that I deserve The Space To Be Broken is you listening to me tell you that I do and for you to believe me. To believe my struggle and to believe me when I say I need help. And for that to matter to you. For you to consider that to be an important and/or the right thing to do.

And I want to be clear that this is defintely not a uniquely neurodivergent phenomenon. I have seen trans folks ignored by folks in a similar way. Friends and family with endometriosis (and other conditions cis men don’t get) consistently get shitty medical care because of the same thing. People of colour, women, queer folks, all kinds of people have had the same struggle to have their issues being Space-worthy. And that all definitely sucks.

So I guess what I’m saying is I understand your skepticism. I might be skeptical too if the roles were reversed. When the roles were reversed, I was. And I don’t feel good about that in retrospect at all.

But I guess, I’m telling you now that I believe that neurodivergent folks need The Space To Be Broken. In case that’s news to you.

I also believe we are not usually currently afforded that.

All I can say, is that I hope you believe me.

Fans of my work will not be surprised to know that this isn’t what the essay is actually about. For those new around here (firstly, welcome! Feel free to comment, like and share), the introduction almost never is.

I opened Medium today because I wanted to share a feeling.

The feeling of being lost.

And sometimes when I try to write, I realise I need to explain something first. Today we needed to understand The Space To Be Broken.

Because I’ve struggled for weeks to write about this. Today I worked out why.

And as I struggled to write another for weeks on end, I found myself wondering ‘Why do I struggle to talk about the darker feelings of ADHD and autism?’ Or ‘Why can’t I share how I’m struggling?’.

The next section is the written out version of what I learned.

Potential Reasons I can’t share my current autistic and ADHD feelings

Embarrassment

I originally thought maybe I’m simply just too embarrassed to share things. It’s pretty personal. It would make sense?

Yeah. On reflection, I just don’t think that’s it. People close to me have invisible chronic illnesses and struggles and they share details and I see that and I think it’s valid and admirable. I am in awe of the people I know who share their struggles. It’s a hugely inspiring quality. I want to do it. I simply don’t think this is something to be embarrassed about.

But nevertheless I continue to struggle to express myself on this issue. Or, at least I regularly don’t express myself.

Being a poor communicator of difficult feelings

Next I thought maybe I’m just bad at communicating my feelings. I’m autistic. That sounds right, no?

Here’s the thing though. I actually already share this kind of thing all the time. If you don’t know, I have a chronic neurological pain condition (hemicrania continua) and I will share every single aspect of my experience. The pain; the experimental treatments; the emotions. All of it.

Ironic, right? I do do this in another context and feel totally comfortably doing so. It’s not like I don’t know how to ask for space to struggle.

Examining my feelings, I guess I feel like there’s space to share the gory, personal details of chronic neurological pain. I can take time off for headaches. I can ask for the lights to be dimmed. I can openly consume weapons grade painkillers in public. There’s Space To Be Broken.

So no, I don’t think I’m embarrassed to share my feelings on this, when I really think about it. And I don’t think I’m bad at communicating my struggles. There has to be something else going on.

I don’t have the words

Maybe then, I just don’t have the words? Like maybe I don’t truly know how I feel? Or if I do, maybe I just can’t express it.

This one I know isn’t true. There are scores of half-finished, abandoned or unstarted essays where I have written thousands of words about how I feel. I have the words. That isn’t the issue.

It’s just too personal

My next wondering was whether this was all just too personal. This is effectively baring the innermost parts of my soul and my intrinsic inner workings. I’d be exposing my deepest, most vulnerable thoughts.

Maybe I just don’t feel comfortable sharing them?

That’s what I thought for a hot minute. It would make a lot of intuitive sense. But then I thought again. My last three Medium articles were about my worst nightmares, how I can’t feel emotions like a normal human and literally every angry thought I had when I wrote my last article. I’m not shy about talking about my personal life.

I’m also proudly and outly bi, polyamorous and neurodivergent. I am a professional tour guide and tell stories from my life to strangers every single day. And fuck, if you ask anyone I know: ‘is Matt shy about sharing personal stories?’ and they will say something like ‘Not at all! Honestly he could share a little less’. That’s can’t be it.

It is genuinely embarrassing

We’re about to draw an incredibly fine line here.

So, we talked before about me being embarrassed and that not being the source of the problem. I stand that. I’m not embarrassed by my ADHD or autism in the same way I refuse to embarrassed about my height, weight or penis.

But I do think it makes sense that there are some things that are embarrassing to us personally. We have all specific things that embarrass us as individuals. Some people don’t like their nose or job or whatever and whilst it’s nothing to be embarrassed about generally, they happen to be to the individual. Which is both normal and allowed. That’s what I was talking about in the first example.

But there is, I believe, another kind of embarrassment, which I am going to give the name: ‘Universally Embarrassing Scenarios’.

A Brief Introduction to ‘Universally Embarrassing Scenarios’

Universally Embarrassing Scenarios differ from the former specific individual embarrassments in one significant way. If they happen to anyone in the world, they’re embarrassing. It’s just an embarrassing thing. Even if you’re cooler than the Fonz, Pedro Pascal and Megan Thee Stallion combined, you couldn’t pull this off as anything other than personally embarrassing. UESs might include:

• Dropping a big tray of plates in a crowded restaurant and everyone cheering and applauding.
• Being left at the altar unexpectedly.
• Your trousers ripping and exposing your underwear.
• Inviting your inlaws for dinner and then thoroughly botching the meal.
• Discussing your (admittedly excellent**) sex life with your grandparents. In a church. On a work Zoom call. That you’ve lit and angled poorly.

You get the idea. There are some things that are just plain embarrassing. No. Matter. What.

Now I don’t really want to get into the weeds here about what is or isn’t a Universally Embarrassing Scenario. You might love discussing the latest orgy with your grandparents. Torn trousers could be the new bell bottom jeans. Or the new apple bottom jeans. Or the new flared jeans. I honestly wouldn’t know. Like I say, I am an authority on precious little.

The important thing for our purposes is that we could identify a potential Universally Embarrassing Situation and that we’re familiar with the concept. I think we’ve achieved that. Go us. I’m proud of you.

Having said all that, back to essay!

Now we understand what a Universally Embarrassing Situation is, here’s the logical next question:

Is talking openly about your uniquely ADHD or autistic struggles a Universally Embarrassing Scenario? It could be, right? Intellectually, it’s at least possible.

My first instinct is… no, right? You shouldn’t be embarrassed to be blind (unless it’s because of masturbating or insufficient carrot intake), arthritic, PMS-ing, undergoing the menopause and all the kinds of things we talked about early.

I argued earlier that ADHD and autism flare ups feels similar to those kind of things. So accordingly, we might be tempted to say no I think. Endometriosis obviously isn’t embarrassing, so neither is this.

But… we had to add a wrinkle.

Whilst that is true philosophically, lived experience is a little different.

Have you ever accidentally lost your mask and actually told someone how you were actually thinking or feeling? I have. A bunch. And people don’t seem to know what to do or say.

Sometimes when you share things about your autism or ADHD flare up you are mocked for being weird and it is tempting to feel like it’s innately embarrassing actually. Even if you don’t feel personally embarrassed. People sort of feel embarrassed enough for you that it sort of gets you by osmosis? It’s truly a bit bizarre.

For me, the word that best describes what I’m getting at is ‘cringe’. Other people seem to cringe. I feel cringe. There’s no other word for it. It makes me cringe. It’s embarrassing.

Having said that, I don’t actually think this is a Universally Embarrassing Scenario. I think people often just don’t know how to react and that can be hella cringy. But know, dear reader, that sharing your feelings about ADHD and autism doesn’t have to be cringy. Even if it is in the moment.

So, wait, if sharing your ADHD and autism challenges is not personally embarrassing, a Universally Embarrassing Scenario, a lack of words, or a worry of oversharing the deeply personal, what’s going on here?

We’re getting there I promise.

But first, I need to explain another concept.

An Brief Autistic Explanation of How Conversations Work

It seems to me, that you don’t have many truly unique conversations as an adult.

Or, in other words, most conversations you have in your life follow a pattern that you either worked out, or learned as a kid, or it’s what your parents do or whatever. There’s a framework you experiment minimally within.

If you walk into a butcher, they might say ‘Can I help you?’ but they definitely won’t say ‘Yo Mamma, can I get meat all up in and out your holes?’***. Whilst technically both conversation-openers lead to a conversation about your meat purchases, there is a usual way to do that. There are rules to this shit. Trust me. I’m autistic. I’ve actively tried to learn them.

Now, to be clear, this isn’t a perfect process. People say things they don’t mean all the time. I’ve actually written a whole essay on this that I haven’t released (for the dumbest possible reason****) on these ‘Universally Known Mistruths’. But I think, for now, we can agree that there are largely known conversational frameworks we’re working in most of the time with most people. Fair enough? Good. Glad you agree.

So when you’re trying to express yourself, you have some tried and true options in most walks of life:

• “So, how was your weekend?” — Classic, safe Monday morning question showing politeness and interest in your colleagues. Nice.
• “Goodness it’s cold out there today, isn’t it?” — Classic winter ice-breaker (all puns are deliberate, yes) and invitation to bitch and share opinions on the weather.
• “I’m a little under the weather, actually” — Classic way to let people know you’re feeling a little crappy in a manageable that will hopefully invite some sympathy.

Good so far? Peachy.

And, we actually have one of these frameworks already in place for folks who need The Space To Be Broken.

It goes something like: “Actually, I’m having a flare up of my IBS and I can’t make it in today”. You call your boss and say that and it’s totally normal.

This will, in 100% of circumstances, lead to some variant of “that sucks mate, feel better and let us know when you can next make it in”.

Same with cramps, diarrhoea, migraines and so on and so forth. All the examples we’ve discussed along the way.

Now we’re at the interesting (to me) conclusion which will allow me to actually start the 2 minute article I started thousands of words ago.

I believe that there is currently no widely understood or used conversational framework currently in place to talk about struggling with a flare up of autism or ADHD.

Caveats quickly. There are in neurodivergent circles. There are in relatively dorky online spaces.***** Wildly, there is on neurodivergent Tiktok. But we’re talking about broadly in mainstream society and I don’t think it is true there.

So, if there’s no framework, how do you actually talk about this stuff in practice? It’s tricky, right? Probably at least as tricky as rocking a rhyme that’s right on time. It’s tricky.

Now again, this isn’t new or unique to the neurodivergent struggles I’m talking about.

Queer folks had to set up language and conversational rubrics around queerness. You’ll be familiar with a lot of it and lots of it is excellent. Some of the pronouns stuff, whilst totally heckin’ valid, is a little clunky but a lexicon is developing. The conversational framework is being built. It’s a long, ongoing and iterative process and it’s going well in the main I think.

Trans and non-binary folks specifically have developed similar conversational frameworks too in recent years. There has been a lot of interesting discussion about what you can ask about transition, what’s too personal of a question and what kind of words are welcome.****** That’s super useful.

Folks with disabilities have had to do a lot of this too in recent years. We got rid of words like ‘retarded’ (hated writing that) and ‘special’ and ‘spastic’*******. We talk about people with disabilities, not cripples or the disabled. The conversations were moved away from feeling sorry for people to empowering them. We ask different questions now and that’s definitely a good thing and we should do more of it.

And, interestingly, this isn’t only a lefty minority thing. Other groups do this too. American conservatives have created a whole vocabulary around ‘wokeness’ and the like and they too are trying to create new conversational frameworks. And they suuuuuuuck. But this is a human thing. Not a lefty thing.

In summary, sometimes new situations in society require a new conversational framework. Whether it’s deliberately designed by the relevant community or develops organically, this work needs to be done.

Now, we may be nearing the point to all this. Back to the article.

Having said that we can now start to answer my question which is (in case you forgot through the infinite tangents):

Why can’t I share my feelings?

This morning I finally asked myself a relatively obvious initial question: Why do I actually want to share these feelings in the first place?

Sure, there’s some advocacy work going on here. I aspire to be a voice in the neurodivergent community. I don’t hide that. Sure, it’s also true that I have an ego and like to write and talk. Sure, noone likes to lack self-awareness. And sure, everyone likes to be understood or feel seen by their loved ones and communities.

But above all that, I wanted to share my feelings because I want to ask for The Space To Be Broken.

I have wanted to ask for The Space To Be Broken for a while.

Because I’m struggling.

Because I need that Space.

For those who don’t know me personally, allow me to offer you a quick personal update.

I’m currently unemployed, recently bereaved, alone in a foreign country, a single Dad with rubbish visitation, perpetually ill, disabled with chronic pain, overwhelmed and my brain has decided now is the perfect time to stop working properly (i.e. an autistic & ADHD flare-up). Even by its own, admittedly wonky, standards.

So, sure, it may very much be true that that folks don’t think I’m deserving of that Space. Some people think noone is (and those people suck). Maybe I should struggle on. And maybe I should. I mean I definitely will. I lack options in this regard.

But I don’t think that’s what’s really going on here at the heart of the issue. This isn’t really the story of being policed from Space. I don’t think so, at least. Or, that isn’t the key issue for me right now.

The key issue for me is that I don’t feel like I actually have access to that Space.

Now it’s important to point out that new people are given that Space all the time. I remember when I was a kid that folks would be mistrusting of chronic pain sufferers and label them as ‘lazy’ but now less so. They get Space now. Women’s troubles never got a second look at one point, but now some countries have specific paid ‘period sickness leave’. Which is awesome. Truly top work. Some doctors even now acknowledge that endometriosis might be real (though far too few). Even a few men! So it’s not a hopeless cause. This can change. And it hopefully will.

But.

We currently don’t have a framework to talk casually about how autism and ADHD feels.

These are new conversations for most people.

So, accordingly, I do not currently have a conversational framework to talk about needing The Space To Be Broken for flare ups of my autism and ADHD.

This is why I can’t share my feelings during autistic or ADHD flare-ups.

Because I’ve never done it before!

I have the words, sure. But I don’t have the framework.

So, by having this conversation, we’re creating a new conversational framework! Exciting, right?

It is exciting. Sure. But it’s also fucking scary.

Because you’re putting yourself out there and you are not sure how people will respond. As we talked about before, you need people to care. But will they? We already kind of agreed that this is something you have literally no control over.

It’s also double scary when you’re autistic because literally the way your brains works means you desperately want to follow the rules. You rely on the frameworks you know more than other people seem to. Because you know from traumatic experience that most folks are not really up for new and unique forms of conversation on the regular. And you regularly make mistakes.

But, folk wisdom says that you should do something that scares you every day, so let’s take a deep breath and keep going.

The next logical question then becomes: So, how does one actually do this in practice? How do you create a new conversational framework?

If we look to the recent examples I personally admire (queer folks, gender rebels, disability activists), it’s pretty clear.

You do it by doing it.

You tell your story.

You try things and you see if it resonates.

You offer a conversational framework and you see if it sticks.

That sounds a bit scary but it actually isn’t. Or, maybe more accurately, it needn’t be.

I’ve done it before on a small scale.********

Hold on to your bumcheeks! It’s tangent time, baby!

A Conversational Framework I’ve Implemented

As hard as this may be to believe, I’m not a virgin.

As a parent, I can confirm that I have had sex at least once.

And during my only sexual encounter (Mum reads these), I noticed that sometimes I would like to clarify something potentially non-sexy in a sexy situation. Maybe that’s checking consent (which is sexy) or clarifying my wording (which is much less so) or ask a relevant practical question (which really varies but could be ‘if you’re back is up to it’).

So I’d want to say something off topic or ‘out of sexy character’ without derailing the saucy vibes. And I didn’t know how to do that effectively.

My solution? I created a conversational framework. And that is brackets.

So, the main text is the sexy vibes and the details are in the brackets. It’s hard to describe but intuitive if you see it in practice, I think. Remember, it was only once. Hard to be sure.

Anyway, a few examples might help:

Text to a suitor: I would very much like to kiss you on the cheek (if you’d like, consent is really important).
Response: Fun! (I very much consent to this at this moment)

Text to a suitor: I would love to give you a very big hug (is that the sort of thing you’re into? I don’t want to pressure you into anything)
Response: Sounds hot! (And yes, I’d love that! I actually love hugs.)

Text to a suitor: I would love to throw you on the bed and give you a really hard massage (providing your back is up to it, I know you’ve had some pain recently).
Response: I’ll think about it ;) (honestly, I’m so sore that it’d hurt, but I’d love some spooning!)

It’s not a perfect system. But it is an example of a conversational framework I’ve built. You know, for that one sexual encounter I had that one time.

So, for our current purposes, I know this process to be possible in practice.

We’re getting there. You’re doing great.

We’ve seen here that the only way to create a new conversational framework is to just (unfortunately for me) start having these conversations. You try something; you see if it resonates with people; you make incremental gains.

And it’s possible because I’ve done it.

So, it’s easy enough to do all this. In theory.

Sometimes you need to create a new type of conversational framework from whole cloth. You need to build an entirely new way of talking in service of a need or goal. And I believe that the brackets above are an example of that.

But sometimes, the structure of a conversation is already there. We just need new words to say in them. There’s a frame, but we need to apply it in a new context.

I believe that that’s the case with The Space To Be Broken. We’ve seen that already. We know that some people can call work and say, “Yeah, I’m really sorry, but I’m having a whatever flare-up”. So, I don’t think we need to re-invent the wheel here.

So what’s missing here? What conversational framework do we (or I) need that I’m currently lacking? What words do we need?

Well, now we can finally answer our original question.

I think believe that what is currently lacking in our discussion about autism and ADHD flare-ups is the description of how they feel. I don’t think people know what an autistic or ADHD flare up feels like, looks like or what kind of help is needed or useful.

I think some folks do. Some folks obviously do. Even some neurotypicals probably do statistically I’m sure. But my guess is that most don’t. The mainstream definitely doesn’t.

THIS is why I want to share my feeling. Because I think it’s super important to share how we experience the world.

BUT.

This is also why I struggled so much to do so for the past several weeks. Right? Because it’s nerve-wracking starting a new kind of conversation. To apply new words to a familiar context.

You don’t know how people will react. What they’ll say. If they’ll understand. If they’ll care. If they’re laugh at you. If they’ll ignore you.

Fuck, what if this new type of conversation is a Universally Embarrassing Scenario?! You can’t be fully sure that it isn’t, right?

But you can only create a new conversational framework by actually doing it. By using the new words in the old framework and hoping for the best.

Because, truly, the only way for autistic and ADHD flare-ups to become part of mainstream discussion is to talk about autistic and ADHD flare-ups. Publicly. Often. Consistently.

Which is scary.

So I’ve been putting it off.

Fuck, even within this essay I’ve been putting it off. You’re currently 6,000 words into me putting it off. I effectively wrote mini-essays on four other phenomenons (The Space To Be Broken, Universally Embarrassing Scenarios, creating conversational frameworks and using brackets while engaged in saucy conversation) to avoid talking about my feelings.

But no more. Let’s do this.

Being Lost

The following, I wanna say, poem? was the first thing I wrote for this essay. Originally I wanted to be brave and just post that. Then I decided it needed 6,000 words of context. Because sometimes autism is pretty on the nose like that.

The poem describes the feeling I call ‘Being Lost’.

Being Lost is one of my most common experiences during autism and ADHD flare-ups and it’s also one of the hardest to describe. I can’t write about it in a structured

Future Editing Matt: This is structured? You think? If you say so, buddy.

essay like this. It’s not something you can just explain like that. It’s a collection of disparate feelings that don’t sit easily together and sometimes contradict each other.

I’ve previously written about the feeling of ‘being untethered’. I described it as feeling like you can’t really connect to the outside world. You lose the thread of other people’s emotions and feelings and feel really disconnected. It sucks.

But I want to be clear. That isn’t what I mean when I’m describing being lost. It’s a different, albeit potentially related, thing.

Being untethered, to me, means that I struggle to connect with others.

Being lost is when I lose the ability to connect to, understand or control my own thoughts and feelings. I don’t lose the connection to other people. I kind of lose the connection to myself. Like even if ‘I’ want to do something, another part of ‘I’********* that can’t.

Being lost is struggling to identify any single thought because they’re zooming too quickly and you can’t pick out an individual one. Your feelings are almost unknown to yourself.

Being lost is a near total loss of control or willpower. I can’t describe it other than you can’t make yourself do anything. You’re stuck. Usually in bed. Unable to move, work or look after yourself. And, if you’re me, guilt about all that is usually growing exponentially every single second.

Being lost is knowing you have things to do and that you honestly want to do but for some reason you really just can’t.

Being lost is being stuck. Mentally. Physically. Emotionally. Regardless of whatever you need to do.

And, as I experience it, it’s definitely not a choice. It’s something that happens to you.

I truly believe that anyone suffering the feelings of Being Lost in an autistic or ADHD flare up deserves The Space To Be Broken. You know, in my humble opinion and experience.

I genuinely toyed with doing a full explanation of the feeling of Being Lost. Examples, science, definitions etc. You know, the Matt McKenna info-dump classic.

But, as we spoke about before: you just can’t prove a feeling. A scientific hypothesis on this won’t win hearts and minds. I can’t persuade you by explaining anything I don’t think.

You can only explain how you feel and hope that other folks agree that it’s important.

So this is how Being Lost feels to me.

Enjoy.

How Being Lost Feels

I can’t think.

I can’t stop thinking.

I definitely can’t think effectively.

I currently have every thought racing through my head at the speed of sound. I can’t identify any of them. Wait, maybe it’s… no. Gone. Fuck.

I can’t feel anything specific.

It’s more than that.

I can’t feel.

Maybe I can. Maybe I just feel nothing. I’m not sure.

I don’t know how to be.

I don’t know how to move.

I can’t get comfortable.

I don’t know how to be still.

I’m sore. But restless with it.

I don’t know how to feed myself.

Well, judging by the growing mountain of Doritos packets, I don’t know how to feed myself properly.

I don’t know what to do.

I don’t know what help I need.

I don’t know what to say to people.

I don’t know what to say to you.

I’m not hungry.

I want to eat everything in the world. Except, you know, actual meals.

I want to eat every complex carbohydrate in the world.

I’m exhausted.

I haven’t slept properly in what feels like weeks.

I can’t get out of bed.

I feel like all I do is sleep.

I don’t want to see anyone.

I miss people so very much.

I want to be held.

I’m aching all over for no reason. I don’t love that.

I’m scared.

I’m really scared.

I don’t know if it’s all going to be OK.

I have so much to do.

I’m doing nothing. I need to do something. I just… fuck.

I feel my to-do list growing with every passing second of inactivity and yet, I can’t move.

I feel so guilty.

I want to be productive.

I’m trying to be productive.

I haven’t moved in hours.

I’m not sure why.

I’m never sure why.

I’m so fucking tired.

My brain feels like it’s sprinting through treacle. Too fast and too slow all at once.

I’m just *sigh* lost.

I hate being lost.

I hope I find my way soon.

I’m not holding my breath.

I’ll be here again sometime soon.

Wait, where did the day go?

Did I eat today?

There’s so many messages in my phone. I can’t look.

Fuck.

I hope tomorrow is better.

Thanks for reading lovelies. Until next time.

Oh, and if you need The Space To Be Broken, I feel you. That’s totally valid. And I hope you get it. I hope we all do. Look after yourself.

Thanks so much for reading, folks. As always, it means a whole lot. I’m grateful for each of you who took the time and am deeply flattered by your attention.

If you liked what you read, feel free to do all the social media stuff! You can like this article up to 50 times, so maybe do that? Feel free to share, highlight and all that good stuff.

I want to know, do you experience Being Lost? Or need The Space To Be Broken? I always appreciate it when folks share their experiences with me (and other readers), so feel free to comment your thoughts. It’s a safe space to share here. I’m trying to get better at responding to comments. But they’re so lovely and meaningful that they trigger imposter syndrome. Trust that they are read and cherished and I will work on responding to them more frequently. They mean a lot to me.

For my few devotees, you may remember that my next article was supposed to be about autistic rumbling. That’s still coming. Honestly writing about meltdown was so emotionally exhausting and my mental energy is currently so little that I can’t do that for a little while. I appreciate your patience and hope you see the upcoming diversionary articles as an appropriate stop-gap. Also, let’s be real, when was the last time someone with an ADHD followed through on the actual plan. Right. You had to see this coming.

Anyway, I hope you’re looking out for yourself. Winter can be rough and it’s a time with a lot of big emotions. Remember to eat. Drink water. Speak to your people. Look after yourselves. I’m wishing you well.

See you next time for something I most likely have no intention of writing at the current moment!

Oh, and I started a series a while back called ‘Matt’s Mailbag’. I find it really inspiring to answer folks’ questions so, if you’d like to ask me a question, I’d love to hear it.

Stay safe out there, folks.

* Um, you might be tempted to talk to your family in this experiment. All I’ll say is this, statistics suggest that if you’re neurodivergent and looking for someone DEFINITELY neurotypical, your family is statistically maybe not the best place to look. Regardless of what they think on the matter.

** I’d assume at least. You strike me as someone very attractive and capable in those regards. You always have.

*** If your butcher would and/or does say this, please let me know. I’ll change all meat purchasing decisions in an instant and they’ll have a customer for life. You know, for the 7 people who still use butchers.

**** It’s fully rewritten, mostly edited and checked with friends. It’s basically good to go. Except in one section I only have 4 examples and I would prefer 5. So until I think of this unnecessary example (which will in no way enhance my writing), it continues to live in the vault.

***** Not naming names but Reddit and Tumblr know who they are.

****** I would love to talk more about this process and not get to my actual point which is, *le sigh*, a poem about my feelings. This process invites backlash, infighting, has large intersectional dimensions at play but that’s literally a doctoral thesis and I try to keep these brief. Try, I said.

******* I may have written this out before but it’s worth repeating. Amy, a friend from my steel drum orchestra (just let that be, OK?) heard me say spastic as a slur and very politely explained exactly why that language is, or can be, hurtful. I’m incredibly grateful to her for this and would once again like to thank her again. Thanks Amy. It was truly a watershed moment in my life.

******** And honestly, that’s pretty much the only scale anyone can truly be said to affect in my opinion.

********* FEM and I spent a fair old while deciding if I or me was better here. Let me know which you think is better or more correct in the comments!