Have a family member going for a late-discovery adult Autism diagnosis? Maybe a friend has talked more and more about understanding their own ‘traits’? Or you might be confused by, even wary of, Autism’s terminology?
There might be something here in my recent journey to understand my own Autism that you might find useful.
Of course, every individual’s experience and every person’s Autism is different and – most of all – no voice is more important than that of your loved one.
But that aside, let’s walk through it…
A Late-Discovery Autism 101 (From One POV)
Firstly, that “few words” mentioned in the headline is a self-indulgent in-joke as anyone with the patience (and I do genuinely appreciate it) to be familiar with my writing will know I’m in not in the “few words” business!
So I’ll try to make this as easy to read as possible.
Here’s a few late-discovery Autism basics, purely from my single point of view, you might want to know:
• What is late-discovery Autism: A person, perhaps through their child’s diagnosis, who discovers more and more about their Autistic traits and how they have related to their life.
• Why was a person’s Autism not noticed before: Lack of awareness in the past combined with masking.
• What is masking:The exhausting need for an Autistic person to create a ‘normal’ personality to function in a neurotypical world. Leif Bodnarchuk describes this beautifully as ‘mimicking’.
• Why might a late-discover Autistic person’s Autistic traits appear to become more pronounced over the years: Because masking can eventually become too exhausting to do too often, plus a ‘point of no return’ may occur where it’s almost impossible to go backwards once full understanding of masking happens.
• What’s the correct terminology to use: It’s called Autism and Autistic people are Autistic people. However, much of the terminology can be contentious. For example, ‘low functioning’ and ‘high functioning’ can be a problem as the former disenfranchises the person while the latter assumes a person needs little or no support (until something breaks, sound familiar?). Meanwhile, many people are uncomfortable with the term Asperger due to Hans Asperger’s horrific Nazi collaborations. It’s also of note that the medical sector now terms all Autism with single terminology.
• Something like – say, too much noise in café or a stressful conversation – caused a panic reason for my Autistic friend, but shouldn’t Autistic people just go back, brave-up and try to be more normal: No. You’re probably talking about sensory pain caused by how the brain processes sensory input. You don’t put the wrong fuel in a car then try to fix it by putting in more of the same. Listen to your friend then adjust the environment and make better plans in future.
• What’s the story with formal diagnosis: For late-discovery Autistic adults the choices are convincing a GP to add them to a years-long NHS assessment waiting list (although steps to improve this are at least under way and for good reason) or a private assessment costing anywhere from £900 to £1,800 for adults.
• What is self-diagnosis: Many people feel self-diagnosis is valid due to the barriers to obtain a formal diagnosis, because a person is entitled to be happy with self-diagnosing without going for formal assessment or because a person is likely to have meticulously researched and evidenced their Autism for themselves. It can even be a ‘special interest’ in and of itself.
• Aren’t we all a bit Autistic: Please don’t say this to someone who tells you they’re Autistic and, by default, has also confided in you about the challenges they may be facing. Many people may have some traits they share with Autism, but having two wheels doesn’t make your Wheelie Bin a bike.
• But the person I know doesn’t seem Autistic: (A) See ‘masking’ and (B) think of Autism as an iceberg. You’re seeing the public face of what the person is processing internally and by the sounds of things you definitely you aren’t seeing the challenges they may be facing. Talk less and listen more.
• Do Autistic people lack empathy: This is disputed and believed to be tied to the work of the highly problematic Hans Asperger and his research. But consider that an Autistic person having – say – delayed facial reactions while they process things may lead to this incorrect conclusion. But even on a common-sense level the existence of many Autistic counsellors should be enough to reconsider this stereotype. See also: Autistic comedians.
• What is stimming: Simply a repetitive habit commonly held among Autistic people, for I shake one foot or fidget and have bitten and played with my nails so much it’s has caused jaw damage. Think of it as a kettle with a broken off button blowing off steam.
• What if the Autistic person I know doesn’t want to talk about ‘X’: For me, I hit a pretty strong ‘brain haze’ after long bursts of concentration, or short bursts of conversation, and also process stressful topics very slowly and privately in my own way. Being forced to talk when I’m tired or return to a stressful topic isn’t help or support, it simply upsets my process. This point of view might be helpful if you have experience similar with a loved one.
Self-Diagnosis: One Experience
With that covered, let’s say an (adult) loved one has just mentioned the recent discover that they’re Autistic. Should you be concerned?
Or what if you’re an adult and think you’re Autistic but, let me guess, held back by a nagging ‘imposter syndrome’? Short answer: Don’t be. Every person, and their traits, will be different.
I’ll run through my own journey, including the highs and lows as well as the pros and cons of both unmasking and assessment, in the hope that there might be something in my experience that’ll help.
For me the path from being a child who didn’t speak for years (until suddenly bursting into sentences) to, then, self-diagnosis years later has happened at a time when I’m healthier, happier and more comfortable in my own skin than ever. This is no coincidence and contrasts with many many previous years during which very much the opposite was the case.
It has also happened with thanks to my wife for creating a space where I could be entirely myself and work through this subject. This along has been made the experience an almost entirely, but not completely, positive thing.
What has my experience of the process, overall, looked like?
• The good: For me, understanding challenges with things like noise, rapidly-changing priorities, complex information, interruptions when concentrating, most phone/ Zoom calls, changes of routine, hypothetical discussions etc etc have made it easier to mitigate these when possible. For example: sweet, blessed makers of Loop Earplugs you will always be revered in our home.
On the subject of interruptions, being forced to repeatedly stop or change direction when ‘on a roll’ in work may be crushing for an Autistic person’s output and even mental health. Many thanks to Autistic counsellor Claire Thompson for explaining the concept of monotropic vs polytropic (allistic) brains, ie that railroad focus on the end of a task switching with the result that interruptions can push into the mind into overwhelm.
• The bad: As described above, the ability to ‘mask’ some things and push through has become hard and harder. This TikTok by Courtney Mermaid is exceptional and, if you take nothing else from my ramblings, I’d beg you to take a look.
• The ugly: That mask slipping away means some challenges have even become near-impossible to overcome, putting things like various social events and even something as simple as Zoom-based language course frustratingly out of reach of late. To pick some more examples at random: noise and heat are more unbearable than ever and I find it incredibly difficult to start tasks, or even some conversations, if they don’t have a ton of context, make rational sense, aren’t achievable and don’t have a purpose I can understand from my point of view.
I’m obsessively task-orientated and that social battery these days is like something you’d find in a 40yo torch in your attic (something I get very embarrassed and frustrated about when it comes to thinks like work and family socials).
I also spend the vast majority of my time and energy trying to keep the right balance between routine, work, exercise and diet to avoid stress overwhelm caused by the above challenges the best I can. The boundaries needed to maintain this balance can cause their own pressures and stresses too in a neurotypical world, leading to even more boundaries becoming necessary.
In terms of further downsides of this journey, some people also report how they have grieved for the jobs or opportunities they lost before late-discovery. They can also grieve over years of depression misdiagnosis, and I can very much identify with this experience, but I thankfully don’t find myself looking backwards in this way. The other side of this defence is that I’m fairly fanatical about this sense of ‘staying in the present’ to the degree that I often avoid discussing the past at all.
Anyway, back to those Autism traits you hear about. What do they look like? Well, they vary for every Autistic person but for me they focus mainly on the perception, sensory and social categories.
Is there, however, that fabled ‘upside’? Well, the concept of a ‘special talent’ is disputed and unhelpful as far as I know, but I can dig up exceptional attention to detail when working with a single written information source as well as excellent levels of concentration in the right circumstances. Both of these are highly fragile, however, as a flip-side. Oh, and Autism seems to have given an uncanny ability to spot patterns of behaviour and read people. The upshot of this? I’ve spotted a wrong’un years before getting a message to say “you were right”. My strike rate for this? 100%.
What Happens Next?
Personally, I’m going for a private formal assessment in the new year after finding a service at the lowest end of the price range. I recognise that this is a privilege and I don’t take this fact lightly. I’ve spoken to enough people with Autism expertise and carried out enough research to know this assessment is likely to be a formality.
But did I decide to go for the assessment? Because it closes a chapter, essentially. But each person’s reasons will vary.
However, reading back, in my optimism I may have glossed over the challenges I face and have faced. This comes at the risk of minimising the everyday experience for many late-discovery Autistic people. After all, my medical file from my 20s and 30s must need a Portakabin of its own and much of that could well have been unnecessary with correct diagnosis if awareness had existed back then.
To give more examples, on a bad day I’ll lose confidence in my own speech out and about (processing if you’re being ‘normal’ or not can be exhausting). The work of Damian Milton on ‘double empathy’ gives some fascinating context for this.
Meanwhile even a small number of tabs of information on a screen can look like a foreign language and I’ll quickly ‘run out of fuel’ entirely to the point of non-function on a work call, towards the end of the workday or at a social event.
But I wanted this piece to be positive and most of all hopefully of use to someone else.
So it’s more important to say I’ve been privileged to have an exceptionally accepting and supportive home where I don’t have to mask – ever – and have been able to undertake every step of this journey in a wonderful environment.
Plus, as mentioned, finding a superb employer with a culture of recognising different working styles has been a game-changer and I’m endlessly grateful to my boss in work for this. After all, work-wise I have the adaptability of a high-speed train with no driver.
Also, I’ve been able to learn from my Autistic kids and have the support of amazing friends.
If you want to know more, and please don’t take my word as a single experience as anything but a starting point, these are some amazing resources:
• Social media: Ryan Hendry and Claire Thompson – on Twitter (a platform still standing at the time of writing, I’ve half-moved to Mastodon). Also Courtney Mermaid and the hilarious Autistic comedian Joe Wells on TikTok.
• Reading: I haven’t read it yet but I’ve no doubt Fern Brady’s book is excellent plus, of course, writing by Andy Boal is an essential.
The biggest piece of advice I can give, however, is to let the late-discovery Autistic person in your life talk about their journey in their own way, through the medium of their choice and in their own time. If you have a question, just ask…but the phrase “do you want to talk about this right now or at all” is strongly advised.
After all, they might not want to talk about their Autism, or about any given subject, ever. And, just like not being forced into unnecessary social conventions, that’s very much ok too. If in doubt, watch and listen. And I mean really watch and listen. That, combined with a little research, will tell you all you need to know. In short: little empathy and a lot of observation will serve you very, very well.
As a wiser man recently said: “thank you for your patience”.
*The above views represent one single point of view, many different views and experiences will exist among Autistic people. I do not aim to speak for anyone but myself.
Conor Johnston writes about subjects including mental health, culture, identity and media.
Mastodon: @[email protected]
Twitter: @CJohnstonNI
