Isolation & Community

The isolation of neurodivergent life

There’s something so hard about being neurodivergent – especially growing up, and it appears that being diagnosed didn’t actually help that much when compared to those of us who were undiagnosed.

My whole life I’ve been surrounded by people and at the same time – I’ve been completely isolated. I might have had friends – and some have been incredible, and are a big contributor to my being here. However the actual isolation of living with neurodivergent differences is hard to explain.

I explain to everyone in my life that I am different, all the people who would be considered ‘neurotypical’ – they say they understand, and some make amazing efforts to try and get it, but there’s always a point where it becomes too confusing, too hard to understand, too convenient for some failure that they attribute it as a personal failing.

I was diagnosed for ADHD nearly eight years ago. I spent the first five of those in complete shame for having ADHD – the pathologizing of these conditions makes you see deficits only.

The ‘superpower’ narrative of ADHD was incredibly popular back then – often never talking about the challenges that also came with it. I read a few articles about this – and I couldn’t identify. My ADHD life was hell. I was on incorrect medication, struggling and I thought I was an abject failure for not being able to turn my now ‘treated’ ADHD into a ‘superpower’.

I kept trying to hide it – I disclosed it to my first workplace since being diagnosed – but they made no accommodations, and it was weaponized against me.

I tried to ignore it – aside from talking to my psychiatrist to try and fix it – adjusting medication using the same prescription, but different brand names, dosages and release mechanisms. I ended up doing ok due to hyperfocus and special interests but my medication was not working, at all.

I think I wanted to deny I had it. I hated anyone who was proud of having it, or seemed to acknowledge it was them. I was a ‘person with ADHD’ – it was a cancer to me, and I wanted to cut it out.

Finding a community

I didn’t come to truly accept this would always be part of my life until I started seeing people frame things in more realistic terms. The first one of these describes accurately what it felt like to understand that I was different – Pina – ADHD Alien posted this comic:

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This was the first time I started to feel less alone. There was a community of people speaking about how they had ADHD – and they weren’t hiding it, they weren’t lying about how it’s only a superpower, and they were honest about their struggles.

It was slowly through this community that I got the courage to speak about my own ADHD. I started to accept the things about me that I could not change, that I would always have struggles, and started to realise some of my strengths too.

But unfortunately there were also some significant challenges here too.

Wait… what is actually me ?

The more I interacted with the ADHD community, the more insights we shared, the more I realised that a lot of what I considered great about myself was actually just a trait of being an ADHD person.

ADHD is complicated – while no two people are the same due to their own personal experience – it’s undeniable that we share traits. These differences and struggles we have are where we gain our sense of solidarity and start to undo some of the blame that we have over having issues due to these.

It was important to understand why I did things others did not – at the same time there was a sadness, an anger, and a rejection of the idea. I felt like I was being robbed of my identity due to being an ADHD person, if everything I did was just being ADHD, what agency have I ever really had?

The other issue is discovering stuff often causes a trauma flashback. Some time when your neurodivergent trait caused some significant harm in your life. I had compartmentalised a lot of my trauma, and some discoveries were used like a key. Rage over my treatment ebbed out, and PTSD like effects seemed to become present. It seems like not knowing things might be better initially, but I’ve always been happier to know in the long run.

You come to reconcile it in time – but it does take time. Even with a hyperspeed brain at times, processing stuff related to who you are and understanding that it doesn’t remove agency, but does make you more likely to act in a certain way is a slow process.

There was also something I couldn’t figure out – I still felt alone, there were challenges I had that weren’t ADHD – I thought it was anxiety and depression that co-existed.

Difficulty of my co-occuring diagnosis of autism

CW // strong mental health themes | mental distress

I suffered autistic burnout – this is a terrifying experience. I had no idea what it was, so that made things far more complicated – and I am pretty sure ADHD intensifies the rumination effect – as well as my co-occurring OCD.

With ADHD and autism – lots of us describe it as being chaos and order in the same mind. Unfortunately – most of us discover the other in the worst way possible – during burnout. I don’t think I can describe this any better than someone currently going through it – Melanie_K98. This thread aptly describes the process:

Melanie’s thread on discovering ADHD during autistic burnout

Wait … so there’s #ADHD too? 🧵

A thread on what it’s like to discover a second neurodivergency hidden behind another diagnosis. In my case how #Autism actually masked my #ADHD.

It’s also a thread on what it’s like when those two throw down. It’s a war that can get ugly.

#Autism has always been the most dominant & destructive force in my life. I wasn’t diagnosed until 19 but I learned early on to mask as hard as I could. Bc I was ashamed. Hated what I couldn’t fix. So I hid it all behind a mask. But it didn’t change who I was at the core.

The thing about masking is that it’s hard to maintain. It takes enormous commitment. And I did that by subconsciously using #autism to ruthlessly create order & stability in my life. Routines so strict every moment of my day was choreographed to create calm & order.

But I was destroying myself. That kind of masking erases who you are. Burying all the stress, frustration & pain deep inside. It builds up like a pressure cooker. And it’s only a matter of time before it explodes.

Which is why I’m now in the middle of #AutisticBurnout.

When that perfectly sculpted mask finally broke so did all that control I’d built up in my life. The order & stability I’d worked so hard to maintain. Between the shutdowns, meltdowns & emotional instability #autism suddenly became a thing I no longer understood.

#Burnout also opened a door I didn’t know existed in my head. Literally blew the door right off the hinges.

And hello #ADHD!

Turns out all that ruthless structure & order had actually suppressed a second neurodivergency. The hints were there all along. I just didn’t see it.

It was like an #ADHD prison break in my head. And it went wild. Threw a damned rager. All those traits suddenly everywhere.

With ADHD on the loose #Autism got a rude awakening. Order met Chaos and my brain exploded. And it’s been an epic battle ever since.

It’s weird that #Autism & #ADHD can co-exist in my head. But they do. And don’t get me wrong they’ve got a lot in common. Both bring anxiety & social awkwardness to the party. And both are hella smart even if they go about it in different ways.

But on the whole these two kids don’t play well together. The autistic side of my brain desperately needs routine & structure. It likes things calm & orderly. But the #ADHD side won’t stop throwing firecrackers at the #Autism.

Another way to think of it is the #Autism is trying to sit peacefully under a shady tree and quietly read a book. And here comes the massive swarm of #ADHD bees bringing chaos, anxiety & panic.

There’s a lot of screaming involved. And I’m left trying to referee my own brain.

Not only am I in #burnout I’ve suddenly got to deal with this second #neurodivergency roaring to life. It had always been there trying to break free. But I couldn’t see the #ADHD for what it was bc the #Autism had always been so dominant.

I literally masked me from myself.

So now this is where I’m at. Very public & embarrassing #burnout while trying to research & understand two different neurodivergencies & how they interact in my brain.

It’s hard. It’s chaos. And sometimes the war is ugly. But I’m learning that’s just #ADHDAutism.

Originally tweeted by Melanie (@Melanie_K98) on March 23, 2021.

My experience was the reverse

It was so hard to discover, and then reading up on autism was significantly challenging for me. I had a massive identity crisis. It’s helpful to talk to people with this unique challenge.

I hypothesise ADHD makes your speed racer brain intensify burnout.

The appear to keep each other in check, and then when the mask falls off, it’s like all your denial of either catches up. It’s accelerated pain, suffering and existential dread. Please if you see someone and and you relate, let them know. You feel “insane”, it’s so lonely. 😭

The worst part about this is that you can’t find any information on any of these in adults. I’m trying to fix this, you have to stitch together the absolutely minimal information to figure out how the hell you’re supposed to deal with it. There’s no guide here.

I never want to hurt anyone but I might have

I realized that speed running discovery of some things might not have been the greatest idea now. I always want to advocate, but I never want to hurt people.

CW/TW: A lot of stuff that’s not known that is linked to ADHD or Autism:
A while ago I posted my discoveries over a few years about my ADHD and autism – it went far more viral than I ever imagined it would.

A lot of people related, but I also saw a number of comments that indicated that people were also dealing with their own identity crisis – comments like:

  • “turns out everything I like about me is just my ADHD”
  • “I guess I don’t really control anything”

These comments are balanced with people saying that being able to name the thing has been really important – and that’s the part I wanted for people – but I forgot about the part of this that really sucks – feeling like you’re no longer you.

If this caused you distress – I am sorry. The longer you haven’t known about these parts – the harder it hits you also.

Finding out about my autism has been healing for me personally, but it was a hurricane of hatred of myself at the start, similar to ADHD, and definitely with OCD also. My life has been endlessly complicated by things I couldn’t explain.

I have words now, but acceptance takes a little longer, it was easier with autism, and OCD – but I had accepted my ADHD. I had connected with those who are realists – those who also talk about the struggle as well as the success.

I personally try and focus on the positive stuff in my mind all the time – but I want to also make it realistic that these are challenging – and they will always be.

Summary

I think the pathology of neurodivrgence, and the inherent judgment of being neurodivergent always made me expect the worst about myself when told anything. At the same time, the ‘superpower’ narrative did the exact opposite, it made me hate myself for not being a superhero.

There’s a line to tread, and way to explain, and I still have a lot to learn.

Community is important – but there are unique challenges – terminology wars, internal politics, factions, parents vs adults, diagnosed vs self-diagnosed people (I believe in self diagnosis – it is valid) and many more elements.

These are all at war sometimes. It can get tiring.

Isolation sucks, and finding community can be difficult – but there is room for everyone, and you’ll find your people soon enough.

It’s harder if you have both conditions, and the discovery isn’t always easy – there’s just so much more that you have to reconcile – it’s ok to feel not ok, but try and find people who can help.

In the mean time – it’s probably best to set some ground rules for social media – I did that and it helped.

And finally I’ve had to reconcile the fact I have made some feel unwelcome – because their struggle is different, their challenges are not the same as mine. I love them too – but we agree to disagree about some of the ways we talk – and I’ll never stop advocating for these people also. Everyone should be included.

I’m training at the moment to get better at helping people and I could use your support.

Help me become an ADHD & Life Coach – if you’ve enjoyed my writing

Published by roryreckons

I am an ADHD/Autism Coach as well as ADHD/Autism/OCD/CPTSD advocate and independent ADHD/Autism researcher. I am an ADHD/Autism Coach who trained through the ADD Coaching Academy. I write mainly about ADHD/Autism/OCD/Mental health issues, but will also discuss morality, abolition, and current affairs occasionally.

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