Navigating the Spectrum as a Late Diagnosed Autistic Man

In the first of, what I hope are many, blog posts I thought it would be good idea to give a brief overview of the ‘why’ behind this site. I do not mean, ‘why’ in any existential sense but in more general terms.

In February 2024 I was given an official diagnosis of Autism Spectrum Disorder (ASD),  also known as Autism Spectrum Condition (ASC). This answered a range of questions for me and it also raised a whole lot more. There's more general information about me over on my website if you're nosey and want to see my face but, to cut it short, I am an Old Autistic Man (OAM), with 9 year son (The Boy) who has Autism and ADHD (AuDHD) and a wife (The Wife) who has ADHD. I'm sure I'm a lot more than an OAM but I'm still trying to figure that bit out.

Firstly, I wanted to look at what is ASC? According to the National Autistic Society, ASC is a developmental disorder that negatively impacts the way people ‘communicate and interact with the world'. It is different for everyone and, for that reason, is described as being a spectrum. A person with autism may refer to themselves as being "on the spectrum” if they were to use that word.

Those of us with ASC face a lot of challenges in life from early childhood to...well forever. Some of the more common challenges being:

• Social Communication and Interaction – i.e. not understanding unwritten rules of social behaviour, saying or doing the wrong things and not understanding implied meanings. Most comments I make seem to be followed by an apology, albeit a confused one but an apology nonetheless and The Wife tells me that my active listening skills are sorely lacking.
  

• Repetitive or Restrictive Behaviours – eating, wearing, watching and doing the same things over and over. For example, I will watch Brooklyn 99 and Elementary on loop whilst reading a Jack Reacher book for the 35342634 time (that’s hyperbolic but you get the gist). This can also include “safe foods” (also known as ‘same foods’. In our family we prefer the “safe” option as The Boy who only eats beige food feels this is more relatable to him). Wearing the same clothing is also common. I have clothes that are twenty or so years old. Which is quite old or if you ask my adoring child, is “ancient”.    

• Sensory Sensitivity – Loud noise, strong smells, bright lights and tight clothes can cause over stimulation which can lead to: discomfort, anxiety, irritability and distraction in those of us with sensory issues. Personally, tight clothes and strong smells affect me negatively. Scented candles, incense burners and floral cleaning products are banned from our home. I become nauseated and experience a cracking headache at the merest whiff of potpourri and don’t you dare expect me to walk with a 10 mile radius of The Lush shop.        

• Hyper-fixations and unusual interests – this is probably the most recognisable, and cliched, stereotype of the autistic person. We can have an intense interest in one subject and can, unprompted and utterly unaware of the boredom of others, talk about it at length and in great detail. For me it is books and badgers. Hyper-fixations can last for as little as a few weeks, to years or as in my case (much to The Wife’s joy [1]) a lifetime. In the 19 years my wife and I have been together, she has not once, ever, in the entire relationship grown tedious of my info-dumping monologing amazing badger facts. Never ever, and I am positive she never will [2]. Nor has she ever complained about my hoarding of books and reading up to 7 books on the go, despite tripping over them on an almost daily basis.  
  

• Meltdowns, shutdowns and burnouts – I have seen this described as similar to a toddler’s tantrum. It isn’t. For me, a meltdown is when I become completely overwhelmed by the world. According to the National Autistic Society, meltdowns can lead to a person losing “behavioural control” (this can involve shouting, crying and physically lashing out towards objects, others or themselves). My meltdowns are thankfully rare and tend to involve tears, frustration and verbally lashing out at those closest to me as I drown in an ocean of my own panic whilst screaming that there is nothing wrong. Imagine mento’s being placed in a bottle of Diet Coke and the bottle is shaken. The resulting explosion is a meltdown. They are terrible to experience, recovery can take an age and they can be traumatic to those who witness them.

• Executive Functioning Problems – Executive functioning refers to the mental skills that allow us to manage every aspect of our lives. Those of us on the spectrum can struggle with this to the point that it can severely impact our basic adulting, everything we as adults need to do to survive and thrive. I forget about bills, don’t really think about finances in general and spend impulsively. This paired with an ADHDer wife is a recipe for disaster and adventure, and we often find ourselves in financial dire straits and order a takeaway to cheer us up (the financial struggles of the neuro-diverse will be explored in depth in an upcoming blog). I can fail to do basic tasks that most people take for granted. I struggle interpreting pretty much every single social cue, verbal, non-verbal or written that is thrown at me and I forget information easily. I struggle following verbal instructions and do not really pay attention to anything if I am uninterested in it.

Everyone on the spectrum experiences these challenges differently and in their own way. It is important that coping mechanisms, tools and support is tailored to meet the needs of the individual. What works for me may not work for my son and what's worked for for me in the past may not work for me a few months down line. In this blog, I am determined to inundate people with information about the challenges we face and hopefully be able to provide some guidance on navigating them.

In an old, and often forgotten blog, I went into detail about why it made sense that I was on the spectrum. Here's the link as it seems prudent to repeat it all: I Have Always Been Odd. I know I need to revisit my past at some point, but now is not the time. For me, being neurodivergent, and being diagnosed later in life, I feel like I do not fit in to the world as a whole. I see people thrive, survive and achieve things that leave me baffled. How does a person know what to say in a conversation? How can someone just pay all their bills on time? How can someone sit in an office and work for eight hours a day without drifting off on to the internet to read one-star reviews of movies on Rotten Tomatoes? How can a person really care about bin deliveries or whatever it is they are doing?

Why does everything appear so easy for neurotypical people when everything in my life goes wrong?

Some people call neurodiversity a “superpower” and others see it as a curse. The superpower can enable a person to have higher cognitive functioning in some areas of life but still experience significant issues in others. Jessica L Penot looks into this in greater more academic depth than I have the space to discuss here: Is Autism a Superpower? | Psychology Today 

For me, who doesn’t have a specific “superpower”, autism can feel like a curse (The Boy, thankfully has a very different view and he will be writing about it here soon). I do not think I have any particular gifts from my ASC. I am no more intelligent than the average neurotypical person[3] and I have the emotional intelligence of a dead mouse. I struggle in work because I do not know what people want from me unless it is written down and my tendency to say things without thinking has cost me a job and a career. Not much of a superpower really. As Penot explains,

“It is also not fair to the many people who don’t have any “special abilities” to call autism itself a superpower. Many people only struggle, and it is hard for them to see the superpower aspect of autism…I work with many people who only get the hardship that comes with autism, and accepting the label of disability allows them to reach out for the help they so desperately need.”

ASC is a disability, and our rights are legally covered and protected in the UK by The Equality Act (2010). Despite the extensive research and awareness that is readily available to us, much misunderstanding, stigma and ignorance remains. People either see ASC as being like Dustin Hoffman in the film Rain Man or as a one size fits all disorder. They may say, “I know autistic people and they do not do x, y, or z”. This is pure misrepresentation and is harmful for the ND community and don't get my wife started on the "I'm a bit ADHD myself" or the "we're all on the spectrum" comments.

I basically want to provide a space here that is open and honest about neurodiversity and hopefully help some peers along the way.  Showing how autism impacts my life and the lives of the people I know, and love is the main purpose of this blog. I also want a space where I can freely indulge in my life-long hyper-fixation of creative writing and create a community where people feel safe and inspired to contribute. Share their stories, their poems, their concerns and experiences. If a sweet, sweet seventeen book deal with a major publisher comes along, that would make me happy. And if I could then sell the rights to the movie of my life for millions of pounds so I can live in the forest and listen to Taylor Swift, then that’s just a little bonus[4].

Until then, welcome and thank you for reading.

 Footnotes:

[1] Correction: The Wife’s disdain. 

[2] Further context provided by The Wife: “after 19yrs of having badger facts thrust upon me like verbal diarrhoea (the only fact of which I remember is where a badgers’ vagina is…it’s at the back), I have become skilled to an exceptionally high, awe-inspiring level in feigning an interest in whatever drivel my OAM has taken an insatiable interest in at any given time. My skills are not limited to performing only when I hear the words “I was reading this badger article…”, no no. I’ve mastered the skills of recognising the excited glint in his eyes, the one sided slightly upturned smirk, the flapping of arms or the tensing of fists, the ever so slightly higher tone in his voice when my OAM is about to engage in an unrehearsed, unplanned and utterly chaotic 89 year long info-dumping session. Christ I can even tell by the pace and force of his footsteps when he’s got his little hyper-fixation sparkle shoes on. I’ve told OAM in very polite, passive aggressive and no uncertain terms that I am not interested. I don’t care about Burnley FCs latest signing, badgers, The Oxford English Dictionary’s Word of the Day, Taylor Swifts new song, the complete history of wood or Barry White’s full and detailed romantic history, I just don’t care. But bless him, my lovable lanky and confused little OAM, alas he can not pick up on my indifference. Each time he is convinced that this is the one, this is the fact that will ignite my interest. It never does. Thankfully, I have ADHD so I daydream the entire time my OAM is yapping away. He doesn’t know how to identify active listening from others, I’ve no idea what he’s banging on about and my OAM is none the wiser. I merely put this here to enlighten you all. This is in no way shape or form the rambling words of an ADHDer who has gone on her own little monologue journey without paying close attention to the ridiculous length of the footnote. I would also like to inform our dear readers that the memes and clips I shove in my OAMs face every 45 seconds of his existence are not only hilarious but are highly educational and vital for him to survive. And me constantly sharing my passion for: cross stitching and The Golden Girls is completely normal. Thanks for coming to my TedTalk.  

[3] The Wife would like to point out that her OAM has actually obtained the following formal qualifications: BA in English Language and Literature, an MA in Renaissance and Romantic Literature, a PGCE in Secondary English and his general knowledge is confusingly comprehensive. He’s actually, in The Wife's always correct opinion based on her own views and biases, very intelligent. Except when it comes to common sense, of which he has none.      

[4] From The Wife: “I’m not moving to the forest if I’m going to have to listen to TayTay for more than 4 minutes a week. You’re on your own”.