neurodivergent-overwhelm-support

We’re currently writing a “Handbook for the Recently Diagnosed” – a sort of primer, provided day one, that explains the practical, lived realities of neurodivergence.

A lot of commentary, narrative thrust and general focus in neurodivergence and particularly autism circles, is to define, delineate and describe what‘s going on, we do like definitives after all. But, and I must admit my research is probably flawed, but, there’s little I have read, seen or gleaned online that looks at the practical realities of living, learning, earning and, well, life in general getting by with a brain that is a wild stallion at a petting zoo on good days. On bad ones, that beast has broken out the paddock and is doing doughnuts in an Asda car park at 2am… Story for another time perhaps.

There’s various testimonies and lived experiences but mostly it’s a lot of frustrations, venting, self-therapising, and lived experience, but not a comprehensive “if this, try this” a kinda Sam Costa’s top tips for living day-to-day with a recalcitrant and magnificent brain.

The thing is, that however you arrive at “Destination Diagnosis”, either self-realisation or formal assessment, the lived reality of what your brain and nervous system IS, allows you to start building a better life. HOW you arrive is of no importance, THAT you realise who and what you are, that’s massive.

And yet…

Once you’re dropped off at “Destination Diagnosis” that’s it, there’s no one to meet you at the pick up point, yer on yer own, make us proud kid! There’s no courtesy bus, no welcome wagon, no taxi. There’s not even a signal, wifi or vandalised phone box to sob in.

The support post diagnosis is, at best, woeful. You may get some links and a leaflet, I share exactly what I got later in this post. Whatever your thoughts on support, just think about the lived experience of the person living for 30+ years and then getting told; yeah, all those “things”, yeah, you’re Autistic. That part in the movie where the plot twist gets revealed and just like that, ::insert wind blowing noise:: Keyser Söze has left the building, and you no longer know who you are.

Is Anything Real?

Once passed the initial head trip “If I am not who I thought I am, then is anything real?”

You then turn to “What’s me? What’s the autism?” Erm… So if you are not who you thought you are why continue doing all the things you do? Are those things things YOU really like, or were they performative and for show, just to “fit in”? You do this high wire act alone, thankfully I had a very supportive partner and family, mostly because I HAD built a life the way that worked for “me”, and in fact “US”!

So, you may find yourself behind the wheel of a large automobile thinking, this is not my beautiful house, this is not my beautiful wife. HOW DID I GET HERE? And suddenly those lyrics take on a whole new dimension. Hat-Tip to awesome autist David Byrne and further extended hat tip to Tina Weymouth bass boss, and the rest of Talking Heads for that matter.

As Hughie Green might say, “and I mean that most sincerely folks!”

Who’s Hughie Green? Then you have clearly never seen the magnificent TV series Opportunity Knocks, a proto BGT where Hughie held court and I thrilled at the chance to one day be on the tellybox with my impersonations.

It Was There – Day One

The child who would mimic everyone, spend hours walking round the garden having conversations, making up all the voices from the faces on the telly. A rich inner world that span on an axis that I controlled, much better than the world I saw outside my head.

That world proved to me over and over, from school, clubs, training and workplaces that if you do not fit the model of human they expect, you’re instantly the issue, the weirdo, the “difficult one”. Or the medical establishment tries to “fix” you, or at the very least ensure you’re not a problem for the rest of gen. pop.

This is why, now more than ever, we need to build a neuroinclusive workplace, in fact we need a neuroinclusive society. The benefits would be to EVERYONE not just the NDs suffering daily to be heard, seen and taken seriously. Ease of communication, understanding of different styles and approaches would help all of us, whatever our neurotype.

::Stuart steps off ADHD Tangent Soapbox::

Back to the plot…

When we last check in our hero was raging at the lack of support post-diagnosis…

Let me share with you the  full extent of the support that you get once you have a formal diagnosis.

At the point of formal diagnosis, a process which, for many people is both frustratingly long, offering you a lengthy wait or a big bill as your choice, before sitting in front of assessors and finally getting granted a certificate to put on your wall. (Spoiler Alert: there’s no certificate!)

Before you get that “prize” there’s a tortuous and exhausting process to go through, with questionnaires, appointment chasing and interviews all whilst hoping your executive function does all the right things at the right time – I nearly blew it because I missed a crucial step in one email and failed to fill one part of a form.

This process comes after many months/years of research into every aspect of neurodivergence as you wait, the doubt gnawing at you. The entire process is not built with ND brains in mind. The energy required, the executive functioning required, the focus and the FORMS! DAMN YOU FORMS!!! ::runs outside, shakes fist at sky::

The endless, frustrating questions, where you mostly want to answer “IT FRICKIN’ DEPENDS!”… Can I wear socks, well, yes, I CAN wear them. Do I want to wear them? IT DEPENDS? Also, what sort of socks are we talking about? My socks, socks that I have been handed that are warm/wet/white? A lengthy woollen hose or a short sports sock? C’MON PEOPLE, I NEED DETAILS! 

Whilst you wait for this process to reach destination diagnosis, you deep dive into the entire back history of, and any topic associated or tangentially related to, neurodiversity and consider possibly doing a PHD in it. (deep breath)

Finally…

after doubting yourself and thinking you will be charged with wasting the NHS’s time, you get formally diagnosed. Apparently no, it is not normal for people who are not “on the spectrum” to spend 2 years and countless hours and money on trying to disprove that you are indeed “a bit special”. But at age 56 I was running out of things that it might be!

I once even considered the notion I was a psychopath – just because it might then offer me some respite to this one question “WHY AM I SO DIFFERENT?”

But whatever your pathway to finding out the reality of the situation, as a late diagnosed adult I want to share everything you get given and all of the facilities, funding and general underlying support you get at the point of diagnosis.

So… Are you Ready? Are you Steady? Is your name Eddie? (My Mum said this all the time… Hello if you ARE indeed an Eddie, welcome!)

Here’s the full package of support that you get…

DRUM ROLL…. brbrbrbrbrbrbrbrbrbrbrbrbrbrbrbrbr

You get an email with your full written report, which contains an assessment of every dimension in which your brain is broken, different and generally odd, all couched in medical terms that make you sound unhinged. 

BUT WAIT… YOU ALSO GET…

A link to a page of resources! 

AND THE CROWD GOES WILD…

“I’d like to thank my wife, my children, my good friend Hannah Logan…”

That’s it. You get a list of all the ways you are broken, deficient, and different, and some “Post-assessment resources“. The biggest of big woops.

“We’ve prepared some helpful guides to support you following your assessment.” enthuses the email…

NOTE - Hi - Editor Stu here it's 10 July 2026, just checked the diagnosis notification email received Sept 2025, 312 days and the link to those resources is broken, not even a full year. 

No post-diagnosis follow up, no counselling, or trauma support, pushed in the deep end, good luck. Well, I guess up to now I’ve survived, oh well keep treading water Stu.

The point is

…there’s absolutely no support directly after diagnosis. You’re just left to figure it out, and as someone very late diagnosed, I kinda been doing that since I was born, so, well I guess I just push on with the “cope and hope” strategy, seems to have worked (mostly) thus far.

“WHAT ABOUT ACCESS TO WORK THEN?”

You are right Sandra*, there is Access to Work – https://www.gov.uk/access-to-work – this is what the Gov. says about eligibility, “You must have a disability, illness or health condition that means you need support to do your job.” – Which is helpful, and genuinely could be of use if you need it, but I was not told about this and found out whilst doing some additional research for an Oddcast. But that’s the point, no one told me about it, I stumbled on it when looking for something else entirely!

*humble apologies to anyone with that moniker, including the lovely people I actually know, but it made me laff, I always hear it in a Birmingham, Midland, Black Country accent…

“WHAT ABOUT PIP?”

Yes, thank you Sandra, (you heard it in that accent then too, right?) you could also apply for a “Personal Independence Payment” (PIP) https://www.gov.uk/pip – but after two years waiting for diagnosis and having every part of your life poked and reviewed to see if, yes, he’s an “odd ‘un“, last thing you want is to dive into a whole other world of form filling and further means tested scrutiny.

And the horror stories I have heard first hand from friends who’ve applied and have been through, and still enduring, the process. It doesn’t sound like a fun time. I am not good with this type of bureaucracy, so best for them I do not go anywhere near it.

But that got me thinking… and one thing my brain does do well is solve problems, often at 3am, but timing is not my strong suit.

I’ve always loved Beetlejuice,

The movie with Michael Keaton, a young Winona Ryder, Alec Baldwin, Geena Davies, Catherine O’Hara – loved it since I saw it back in the eighties. My kids introduced me to the musical, which has recently landed in London and a family trip is planned. My daughter’s already seen it 4 times, it’s only been open for about a month! SPECIAL INTEREST much?

If you have yet to witness this marvellous film/musical, there’s a guide given to the newly-dead titled “Handbook for the Recently Deceased“, and so we arrive at the “Handbook for the Recently Diagnosed“, a not altogether original title as a quick Google will reveal, and it’s just the working title – more a sub-header, title page kinda thing.

Because, quite frankly, there needs to be something more concrete than “here’s a few links and some government support, that we won’t tell you about”, because quite frankly it’s disorientating to be told you’re not who you think you are. I spent so much time at odds with the world, out of step, misunderstood and struggling and now you tell me why!

It’s all a bit of a confusing time, and you have to start to reconsider so, so much about every aspect of your life. Having lived my own life since my mid twenties, and just got on with ploughing my own furrow, I had fewer barriers to employment than most, but it is still a disorientating time.

Waaaay before diagnosis

Aged 25 suffering a major burnout/breakdown/life flatline I just decided that I was going to stop listening to everyone else, they just seemed to not get, understand or otherwise process that my experience of the world was not the same as theirs. Their advice and guidance, may have been well meaning, and with a genuine interest in my best interest and good outcomes, but that didn’t make it any less wrong.

I’d spent 2.5 decades on the planet without knowing the reason, or having a “label” to help shape my perception and give me language to help me gain a full understanding of why I seemed to be out of step with everyone around me.

So I just opted out and started to forgive myself for being “odd” and not really being able to explain it. Various Dr’s attempted, psychotherapist, sleep experts, cognitive assessments and diagnosis from bipolar, and hypermania, via insomnia, and OCD and a whole cast and crew of ideas, symptoms and pharmacology all with added migraines! Which keeps you eternally hopeful that at some point you might find some semblance of “nOrMaL“. Whatever that might look like, but like most things in life you’d know what works for you when you see it.

Three decades-plus later

and I have realised that the decision I made aged 25 was the start of it all. The self-acceptance that I was not broken, just different, magnificently fanatabulously awesome. I often thought I was an alien on a mission to gather as much knowledge as I could about humans, and studied them intently, fascinating creatures.

Hence my childhood mimicry mentioned at the start, which led to a career in stand-up and lookalike/impersonations because I followed my own intuition and backed myself. Everyone else’s feedback was along the lines of “REALLY? An Ali G lookalike? Nah.“, but I just knew I could do it, it wasn’t something scary to run away from, but something big and shiny to run towards.

I remember one specific gig, where I was a surprise guest, to give my wife a toast for her birthday, as Ali. The host/main act was sceptical, and openly so, when I told him what I was going to do. Anyway, afterwards he stated “you were amazing” and enthused that I was so much better than he’d thought I might be. And that’s the whole point, that you get underestimated, second-guessed and otherwise diminished. Yet, here we are 32 yrs later and I am still pursuing my shiny, sparkly, rainbow interests, dancing like everyone’s looking and knowing I make a positive difference to my community.

The one decision that changed everything

Deciding that rather than going to beg, like Oliver for a second bowl of gruel to fill me up, that I’d just start building a life that required nothing from anyone and I could make all the accommodations myself.

Why wait for permission to be magnificent?

Remarkable and extraordinary doesn’t look at the clock and wait until 9am on Monday to turn up in a suit. If my energy and passion arrive in a shipping container at 3am, then you betcha bippy I am going to be working, living and loving the project whenever my energy arrives.

In some regards it was a selfish decision (Insert Hannah – “a Necessary one!“), but I decided to put on my own oxygen mask first, you cannot do your best if you do not give yourself the best.

Nothing from anyone

As a policy it only gets you so far, but I needed to withdraw from the toxic people around me to gain some perspective. I saw that actually, you need a community around you, you need others to help you see things you can’t and help you with the things you need help with. A family (whoever you call family!) is the first layer, then good friends who really understand you and have your best interests at heart also adds further protection. Expect false starts, and family members it’s best not to mingle with. Then you find your “community” or “tribe”, which adds strength in numbers, and validation.

This gives you space to figure out who you are and be accepted, and that’s all any of us are trying to do, get through a day, be understood, accepted for who we are and be valued for our whole self, not just the convenient bits, or the socially acceptable bits, but the whole of you.

It’ll share a lot of what we’re delivering with the Neuroinclusive Workplace giving practical steps you can take at work, home and everywhere you go, once you know what is actually going on in that amazing brain and nervous system of yours, an Owners Manual. It’s some thoughts, ideas and suggestions, allowing you to kind to yourself. Not a proscriptive list of tasks or must-dos, frankly that kind of book gives me the right itch.

This is more a pick it up and flick to the section that you most need to read at that time. Bit like a car maintenance manual, it’s the engineer in me, I do like a manual, the oilier the better!

There’s a long way to go, and we have yet to complete the first draft, or collate the research, but the plan is in place and like any worthwhile journey it’s going to take some time to get it completed.

But once it is ready – we’ll share it!