I’ve been trying to write this blog for over a year now, but haven’t been able to figure out where to start. Then recently I spotted a tweet that inspired a response (thanks, I think).
I’m someone who has long been resistant to labels, and once upon a time I might have agreed with this sentiment. However life has a way of throwing stuff at us that can challenge some of our preconceived ideas.
Towards the end of 2021, I received a diagnosis of autism. That may or may not surprise some people reading this. The response I’ve had from close friends has mostly been “well, that makes sense”, or “I thought you knew already?”, but I’ve been a bit nervous to share it more widely.
Amongst autistic people diagnosed as adults, there’s often a fear that people will judge us for “jumping on the bandwagon” or “wanting a diagnosis because it’s trendy” (I’ve always found this ironic given my chronic and well documented lack of trendiness). Other people sometimes assume that because we’ve survived to adulthood and found ways of hiding or working around our difficulties, we’re making a fuss about nothing or simply describing the same minor challenges that many people experience once in a while (“…but we all find people exhausting sometimes!”). “You’re nothing like my autistic nephew” they might say, unhelpfully overlooking the fact that they’re not much like a typical 8 year old either. The implication when people ask often seems to be that we’re looking for a lazy excuse for not trying harder to overcome what (to an outside observer) might look like some mild eccentricities.
I think this is essentially the worry expressed by Miss Birbalsingh: that understanding why some things are more difficult for us will encourage us to settle for less.
I’d like to share a different perspective. As a 46 year old successful woman with a family, my own business, and a Wikipedia page, I might look like exactly the sort of person who has got by just fine without a label. Why would I want one now?
The short answer is that like many of us, COVID hit me hard. Not the disease itself – I was fortunate enough to escape that (so far, fingers crossed) – but the lockdowns and everything that came along in their wake. A lot changed within a short space of time and I found myself out of my normal routine and unable to use the methods of coping that I’d gradually worked out over several decades. I felt like a teenager again: awkward, confused, anxious and frequently exhausted. Even as the restrictions eased, I felt increasingly detached from people around me and unsure how to reconnect. Eventually a chance question by a friend during a phone call (“do you have an autism diagnosis?”) prompted me to investigate this further.
Autistic people are never short of labels, whether they have a diagnosis or not. Language is all about labelling things. As humans, most of us are driven to find words to verbalise our thoughts and experiences. And in the absence of language that helps us to talk accurately and helpfully about our difficulties and differences, people will inevitably find other less accurate, less helpful words to use instead. We may end up being called “weird”, “shy”, “rude”, “antisocial”, “obsessive”, “dorky”, “square”, “difficult”, “melodramatic”, “stuck up” or any number of other pejoratives. You can imagine how years of this tends to wear away at one’s self-confidence.
The more I learned about autism, the more it made sense of my earlier struggles. The difficulties fitting in at school; never quite feeling like I belonged anywhere; the headaches that I frequently had in school, which felt awful until I was able to go and sit down somewhere quiet for a while; the horrendous social anxiety; the mental health problems and so much more.
Back in the 1990s, our understanding of autism wasn’t where it is today and it’s hardly surprising that nobody connected these dots while I was at school, not least because in school I was getting on ok. Or at least, I was doing well academically – which to education and health professionals is often regarded as the same thing. The inner emotional turmoil was perhaps less obvious, and when it was, it was usually attributed to “just being a teenager”.
As time went on, it’s true, I discovered ways of coping. I was fortunate to be able to build a life that (although unorthodox) allowed me to make the most of my strengths and to adjust for some of my difficulties. So far so good. Sometimes when we’re in an environment that works for us and things are going well, we may get along just fine without a label. But that rarely lasts forever. I still found that life changes threw me completely. Relationship breakups, the birth of my son and eventually COVID each brought changes that I found it hard to adapt to. Each time, I’d suddenly and inexplicably find myself feeling lost, overwhelmed, and unable to explain why basic things that most people seemed to manage effortlessly were so hard for me.
Having a diagnosis allows us to understand why those things are harder. It allows us to compare our experiences with other people who have similar challenges. It gives us the opportunity to predict and plan for events and life changes that are likely to cause us problems, rather than suddenly finding ourselves in the middle of a crisis with no idea what’s going on or how to even ask for help.
On a practical level, we can share information, exchange tips and find workarounds that allow us to function better. Since learning more about how my brain works, and adjusting how I do things, I’ve found myself being able to do more and feeling much less anxious. On an emotional level it helps to know that there are other people who share some of those same difficulties, and sometimes we can even have a laugh about them. In a world where autistic people often feel disconnected, it’s nice to feel a bit less broken and alone.
Would having a diagnosis as a child have stopped me achieving some of the things I’ve accomplished? Would a label have “held me back” as Miss Birbalsingh fears? I doubt it. I was never a kid to be put off by other people’s limitations or stereotypes. When I set my heart on studying maths at Trinity College, Cambridge, I was flatly told by one of my maths teachers “you won’t get in”. My response? “Watch me.” (I did, in fact, get a place). At a time when women’s Mixed Martial Arts was almost unheard of, I was one of a small group of women who helped build a sport that now has a worldwide audience and mainstream media coverage.
I’m well aware that my experiences are only one story, and that on balance I’m one of the lucky ones. Others I know, including members of my family, have been less fortunate. So are there others who find labels more limiting?
Labels are only limitations if they are allowed to be. If the people around us have limiting beliefs about what “people like us” can accomplish then yes, there’s a danger that that could influence our own self-belief. And I agree that lazy stereotypes are common and can be easy to fall into, as Britain’s strictest headmistress knows all too well.
The answer, though, is not to avoid labels altogether. Language helps us understand and express our inner world and our experiences; helpful labels are those that enable us to reason and problem solve. I can definitely think of times when the right label could have saved me a lot of trouble and heartache. It’s easy to feel as though they’re unnecessary while things are going well, but when the situation or the demands change we can find ourselves out of our depth very quickly. If we wait until that happens before seeking a diagnosis, there can be a very long wait to get any kind of help. By the time it does arrive, it’s not always possible to undo the damage that’s been done or return to the opportunities that were missed.
The correct answer is to challenge the stereotypes we unthinkingly associate with our labels. This is how teachers can best help all those with SEN: by giving all students the support and understanding they need to succeed, and rejecting the idea that a label implies limitation.
I think this situation will improve. As more neurodivergent and disabled adults are talking openly about their experiences people will gradually gain a better understanding of what these labels actually mean, and what can be achieved with them (not in spite of them). There are more of us than you might realise, and our experiences are as varied as yours. From experience I know how much a stereotype can change within a generation as long as there are people willing to challenge it.