A couple of things happened recently that have led to this post. Firstly, I reached the “milestone” of 5 years since my autism diagnosis. Secondly, I spoke about autism and neurodiversity on a leadership training course. Both of these got me thinking a lot about my own experiences pre- and post-diagnosis and how autism has impacted on my life over many years. What keeps coming up are two questions – the first is whether I am glad I got diagnosed and, leading on from that, the second is whether I wish I’d been diagnosed earlier in life than at 40 years old.
The first question is easier to answer, and my response would be a resounding yes. I’ve never regretted seeking a diagnosis for a minute over the past five years. The simple reason is that I now know and understand myself better than I ever did before. Learning about autism has gone a long way towards explaining aspects of my character and emotions that I could never get to grips with. I can celebrate ways that I’m different, rather than seeing traits as a weakness or abnormality. Probably most important, because I know the way my mind works and the way I react to things, I can put in place coping strategies to handle stressful situations and communicate more effectively in my working and personal life. The sheer relief of discovering you are not mad cannot be underestimated either. At the same time, I’ve had the opportunity to meet and share experiences with other autistic adults through joining support groups and interacting online. That has been hugely important for me – when you spend most of your time surrounded by neurotypical people, being in an environment where you don’t have to explain your reaction to situations because the other people just understand is a precious thing. So all in all, no regrets.
But that doesn’t necessarily mean I’d advise anyone to seek diagnosis. It really all depends why you are considering it. Certainly, don’t get a diagnosis to access support as there is next to nothing available for adults in the NHS, and what is out there is subject to a postcode lottery. And if you are fairly comfortable in your own skin and not having any trouble with self-esteem, depression and the like, then why rock the boat? Just carry on as you are and you will be fine. You don’t have to produce proof of diagnosis to read about autism-related challenges online or in books, so you can still address any issues you are having. And of course, you can change your mind later. But if you genuinely feel you need that confirmation and would benefit from putting a name to things that have impacted your life, by all means do as I did and go down the diagnosis route. Be prepared for a battle, with your GP and/or with the bureaucracy surrounding adult referrals, but be persistent and you can get there.
So that brings us to the second question. Because of how much more confident and comfortable I am now, there is a strong temptation to feel a kind of regret that I wasn’t diagnosed earlier in my life. But I don’t think the issue is as cut and dried as all that. Like anyone, my past experiences have made me who I am today. My resilience and persistent attitude have been partly shaped by facing difficulties and the need to be able to take care of myself in tough times. I arrived in the dual career that I now successfully pursue in part as a reaction to struggles I had getting on in a more conventional working environment. I take a huge amount of pride in having achieved the things I have. Because of or despite being autistic? A healthy dose of both I believe. Nevertheless, if I’m being totally honest, I would be lying if I said I am perfectly happy with getting my diagnosis at forty. Being able to gain the understanding I now have of myself when I was a bit younger would have made life’s path a bit smoother, saved me lots of heartache and meant I could ensure I put in place the right strategies, rather than being treated for all kinds of mental and physical health issues that were actually manifestations of being autistic. That’s not to mention the amount of money I’d have saved on therapy of various kinds! So a somewhat earlier diagnosis would have had its benefits. But not so early that I never developed some of those positive aspects of who I am today. And one hundred percent definitely not in my childhood or youth.
Things are very different today. There is a much greater understanding of the autism spectrum, especially at the higher functioning end, and young people and their families can access excellent, targeted support at home and in their education, as well as assistance with things like independent living and accessing the workplace. But when I was growing up in the 1970s and 80s? Not a chance! I seem to think I’d heard of autism when I was young, but not as a spectrum, and certainly not as something that might relate to me, despite my many quirks. If people were aware of autism at all, it was either the lower functioning part of the spectrum – the “classic” image of a (probably non-verbal) child sitting rocking in a corner, failing to engage with the world – or the “idiot savant” stereotype popularised by media representations like Rain Man. Certainly, the idea that someone could be autistic, yet still able to live relatively normal, productive lives, have jobs, relationships and families, was far away at that time in history. Even as awareness and scientific findings developed, if I’d ever been diagnosed in my teens, for example, I can’t help thinking the label would have been a very negative one. I might well have never had the opportunities I had to gain an excellent education. Autistic kids were in remedial classes or special schools, not Russell Group universities.
So where does that leave me, all in all? Certainly no regrets about diagnosis, but maybe a slight wondering whether some times in my life could have been easier had it happened a few years earlier. But overall the good outweighs the bad. In a world where teenagers with autism get denied a referral by a GP because they caught a ball (“if they were autistic, they wouldn’t even be aware of the ball”) and adults are turned away because they manage to have a relationship (“you can’t be autistic – you’re married”) – both of which are experiences of personal friends of mine in the past few years – I feel lucky that I had a GP who supported me in getting a diagnosis and was able to go down that route five years ago, and that I have been able to learn so much since then from websites, books and other amazing autistic people I have met.