Is an adult autism diagnosis worth all the hassle?
I'm often asked about adult autism diagnosis and if it's worth all the time, trouble, money, and hassle you have to go through to get one.
I can speak only for myself, but for me the answer is an unequivocal "yes". It's not always been easy and there have been times I wish I'd not bothered poking that particular shadowy hole in my psyche with the sharp stick of curiosity and diagnosis, but on the whole, yeah.
It's up there in the top few things I've done in life I can say have made a massive difference.
... why did I do it?
After all, I was 54, running a successful business, happily married, and adored and beloved dad to four awesome kids.
3 reasons I got diagnosed
The first is I just wanted to know.
I've known I was different all my life. At first I assumed we all felt the way I felt and perceived the world in the same way. Over time it became clear that wasn't the case.
But it wasn't until my early 50s, after a close friend asked me if I'd ever considered I might be on the spectrum, I put any serious thought into it. At first I was laughingly dismissive, but I took the RDOS test, dug into the topic as is my wont (ironic in itself), and came round to the conclusion, yes, I'm autistic as fuck.
But self-diagnosis left me doubtful, as I know it does others.
Am I making it up?
Am I overreacting?
Am I just a fucking snowflake wrapped in a cloak of inadequacy?
My view on life is I'd rather know the truth — however awful it might be — than accept a lie.
I didn't think much about it at the time, but I guess getting a formal diagnosis was inevitable the minute I self-diagnosed. It was a case of when not if.
Secondly, it made things easier. Unless you've been in the situation yourself, you can't begin to imagine how tiring it is to have your self-diagnosis questioned, belittled, and invalidated at every turn.
The assumption seems to be you've woken up one morning feeling a bit spectrummy and have self-diagnosed on a fleeting whim. It's not like that. No one in their right mind would casually self-diagnose as autistic.
Moreover, being the way I am and desirous of giving accurate and precise answers (more irony), it was hard work couching my explanations appropriately to get the message over I wasn't formally diagnosed but I was sure in myself I was autistic.h
Having a formal diagnosis means now I can simply wave doubters and dickhead off with an "Here's my diagnosis. Get the fuck out of my face and argue it out with my assessor".
And thirdly, it didn't sit well with me to be an advocate for all things autism and not be diagnosed.
Even worse, regardless of how I felt about it, having no diagnosis made it easy for those who didn't want to heed my message to come back with "But you're not diagnosed, so what do you know about it?".
Sure, that's irrational and illogical, but most people are fucking stupid, so this was a common attitude I came across.
In the future this side of things will be an important part of my life and business. I informally mentor neurodiverse adults and some older children for free (get in touch if you're interested), but l also consult with businesses on how to deal with autistic employees as well as create an autism-friendly culture and physical environment for them.
It would be hard to be taken seriously without an autism diagnosis of my own.
Practical benefits of an adult autism diagnosis
Practically, there are few advantages to having an adult autism diagnosis beyond self-awareness and -satisfaction.
I do have an ID card from AsIAm.ie, (my friend, Victoria, calls it my "snowflake card"), which is useful on occasion for jumping the queue at the supermarket.
It's also allowed me to register at Dublin Airport for an "important flyer lanyard", which makes travelling exponentially less stressful (many airports in the UK, plus Cork airport here in Ireland, recognise the Sunflower Lanyard, which serves the same purpose).
And there's the rumour I might be eligible for a "blue badge" for the car (can you imagine?).
I also habitually wear a badge saying "This is what autism looks like". I've been accused of "attention seeking", and this is absolutely correct to some extent.
I want people to know I'm autistic, you fucknugget.
- It helps them because it offers them an explanation for why my behaviour and responses might seem a little strange to them.
- It helps me because it offers them an explanation for why my behaviour and responses might seem a little strange to them (and I've found it tends to get people to leave me alone, which is perfect).
- It helps spread awareness by showing people this lean and muscular grizzled old greybeard is an example of how their stereotyping is fucked up and needs a kick in the 'nads.
Anyway, that's it.
I got my autism diagnosis in 2019 age of 54, and my only complaint is given the opportunity, I'd have had it done decades before.
I have a good life and as far as the alexithymia allows me to know these things, I'm happy. More to the point, it's my life and it's up to me to make whatever I will of it.
But I can't deny it would have been easier had I known the reason for me being the way I am a whole lot sooner.
Jon McCulloch, The Evil Bald Genius
Author, speaker, business owner, and autism advocate