I’ll be blunt: last month’s assessment (and everything leading up to it) took the life out of me. I can’t tell if it’s depression, stress, or burnout, but I’ve been pretty out of it since. I’m struggling to think straight, and I don’t think it’ll let up any time soon.

I’m using this post to say I’m still around and that I’d like to write more posts, but I’m finding it all a bit difficult with whatever’s going on in my head.

The rest of this post is dedicated to some thoughts I’ve had since receiving my diagnosis.

Autism and this blog

I intend to write more about my experiences living undiagnosed, and the process of getting assessed. As much as I want to write for the other mes out there – those who are undiagnosed, struggling, and confused – I can only really write for myself to unpack everything that’s happened..

I won’t exclusively pivot to talking about it, but it might be a key topic for some time. I still have a bunch of usual and mundane posts in the works, but again I haven’t been firing on all cylinders as of late.

While a diagnosis doesn’t change who I am, it at least offers an explanation and a lens to view myself through. And while I’m currently unsure if I want autism to define who I am, it’s always inherently been a major part of me. There were even signs of it on this blog.

At the start of this year I tried tackling a massive blog post titled Pervasive lack of identity. I never finished it, but the title says it all. It turns out that identity issues are more prevalent in autistic people, and it’s a common source of distress. I don’t really know where I’m going with this, so I’ll stop here.

Grieving a late diagnosis

While it’s a relief to finally receive a diagnosis as an adult, no-one ever mentions the grieving that accompanies it, nor do they mention how widespread it can be. In the month since I was diagnosed, I haven’t been able to shake the grief over:

• The life I could’ve had if I wasn’t autistic
• The life I could’ve had if I was diagnosed as a child
• The different choices I would’ve made had I known I was autistic
• The fact that I have a disability

Not that it would’ve solved everything. Diagnosed or not, there’d still be decades of pain, but knowing would’ve helped so much.

In my first year of school my teacher took my parents aside about the way I behaved and recommended I get assessed for special educational needs. My mum declined for a multitude of reasons, including how she didn’t want to label me and how she “didn’t notice anything weird at home”. A single decision could’ve changed a lot.

Ruminating on the past is one of those things you know isn’t going to help, but how can’t you do it? It’s not like a diagnosis undoes decades of pain.

The sad thing is I got lucky. I got diagnosed in the tail end of my twenties, but that’s nothing compared to the people who get diagnosed at 40+.

Near-future of autism in the UK

In the days following my assessment, I saw two stories on the front of the BBC News website. The first was about Dame Uta Frith’s comments on autism’s broadness and beliefs of misdiagnosis (especially for those seeking a late diagnosis), and another on how Autism & ADHD care is an expensive wreck.

I can’t help but feel I caught the last chopper out of Saigon.

In the last year or so, Autism (alongside ADHD) has become a battleground in the culture wars. From claims that it’s overdiagnosed, that people are seeking assessments simply for welfare, and how we can’t afford helping people, the tabloids are more than happy to indulge in it without a care.

Even if you put aside the ideology, it misses the forest for the trees. Society has spiralled out hard in the last decade, the cost of living & energy crises are crippling everything in the country, and employers are widely demanding more for less. While it’s always been a struggle for those with autism to thrive, it’s now a struggle to survive – those who could previously keep it together are hitting their limit as the expectations become too much, and it becomes clear that something is wrong.

I can’t see it getting any better for people seeking help. The cost of Britain’s welfare is a hot topic, there are more people seeking an assessment, and the NHS can’t cope with the load. And while an upcoming Government report is rumoured to deny claims of overdiagnosis, it won’t stop the tabloids and Facebook warriors at all.

Do I think they’ll outright deny late diagnoses? No. But I can see a future where they put restrictions on who can receive a late diagnosis, and I can’t see the insane waiting times coming down any time soon.

While I’m here, only 3 in 10 autistic adults are in work. But as things stand now, employers don’t want to take a chance on anyone¹, let alone an autistic person. As if the current state of job hunting isn’t bad enough, employers also use “personality tests” to weed out autistic candidates while bypassing discrimination laws. I think it’d take a miracle to restructure society to improve this.

I like the jigsaw piece

Leaving the small, controversial thing for the end: I like the jigsaw piece², and I feel like it represents me. My entire life has been spent wondering what’s different about me and why I’ve been unable to fit in with the people and world around me. A lone jigsaw piece feels fitting for my experience, but of course, all our circumstances are different.

Looking from the outside, most of its ire is due to its use by the contentious Autism Speaks group in the USA – there’s such a furore about it that many think that they invented the symbol, when in fact it was made by a member of the UK’s National Autistic Society in 1963. And while the crying child on the original logo completely represents my childhood, it’s admittedly a little creepy.

But at the same time, I understand the reasons why others aren’t as fond of it, especially when it’s been a symbol controlled and applied by allistic folk. Again, I can only speak for myself when I feel it fits me and my experiences.

Currently, one of the more widespread icons of autism (and the wider neurodiversity movement) is the infinity symbol. And I get it, autism’s a spectrum with a lot of difference within it, but the symbol and meaning feels a tad too twee for my taste. Not that I’d object to anyone using it of course.