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Labels and Definitions

If you ask me, the question of the day – or perhaps decade – is, why does everyone suddenly want a label? On the breakfast news this morning, the top story was the alarming rise in young people being diagnosed with conditions like Autism and ADHD. As I think I’ve mentioned before, people also seem to be far more eager to categorise themselves as being Autistic or having ADHD than they once were: I now seem to hear people declare “I’m autistic” almost daily. The term seems to be being thrown around more and more lightly, as though people are becoming more and more eager to highlight their perceived eccentricity or other-ness. It’s almost as if it has become essential to be seen as a member of a minority or subgroup, particularly on social media, and that not doing so groups you alongside the oppressors. If you ask me, something very, very strange is going on.

Perhaps the obvious initial question is what could be causing this abrupt rise. If this was any other medical condition, there would probably be talk of an epidemic in the air. But I don’t think the normal rules apply here. Prevalence levels for more ‘traditional’ conditions and disabilities seem to have remained fairly stable, whereas those for neurological conditions seem to have shot up. If autism was like any other condition, surely you would expect it to follow similar patterns. Rather, I really suspect the difference is the definitions of conditions like Autism and ADHD has been dramatically widened: it is no longer the severe, extremely debilitating condition I observed at school, but now encompasses a wide range of – previously fairly normal – behaviours.

The thing is I can’t help suspecting that there is some kind of political motivation behind this definitional change. People seem more and more eager to assign labels to themselves, to be seen as belonging to one subgroup or another. It’s not that I dispute that levels of ‘mental distress’ are rising; I think rather that we are becoming too eager to categorise such behaviours and feelings as specific conditions, rather than accepting them as part of everyday life. As the definitions of conditions like autism have become forcibly wider, they have become little more than a sociopolitical bandwagon people are becoming more and more eager to jump onto. Thus we hear people ‘outing’ themselves as autistic, dropping it into the conversation at any opportunity, like it is some kind of badge of honour or status symbol. In assigning themselves such labels though, using such terms so arbitrarily, they gradually strip them of any real meaning, and force us to forget that autism is in reality a highly debilitating condition often requiring a lot of support.

Social Media and Emotional Regulation Questions

I’m probably just once again using my weblog to think things through, but I was just watching BBC Breakfast news. They had an item on the possible banning of social media for under 16s. Now, I’m very much on the fence on that issue as I can definitely see advantages and disadvantages to such a ban; but during the item, one academic stated that there was a link between the use of social media and ’emotional regulation’. That really caught my ear: we know that people with autism have trouble regulating their emotions, and it’s one of the defining features of the condition. Could there be some kind of connection between social media use and the dramatic rise in ASD we’re currently seeing?

I’m pretty certain I won’t be the first person to wonder about such a link. I’m just thinking openly here, before doing any googling or research (yes yes Dad). But you have to wonder what such a connection could mean, how it might be objectively established, how we might explore the way social media use effects how we interact with society, and what if anything could be done about it.

Interestingly, later in the Breakfast programme, they also had an item about a man with severe autism, and the techniques being used to cut his hair. He had what I’d recognise as autism from my school days, was non-verbal and clearly couldn’t really interact with the world as others do. To be honest I think there is still a real, clear distinction between this manifestation of autism and the one now being ascribed to so many more young people. They may be on the same vague spectrum, but I don’t see how they could relate. The boy with autism had apparently been diagnosed ten years ago, when he was very young; yet these social media-using kids will be in their teens and will still be highly capable of interacting with other people on some level. This situation is obviously very complicated and certainly worth looking into.

More About The Spectrum

If I can pick up on what I was discussing here a couple of weeks ago about how I feel that autism is becoming increasingly politicised and problematic, I think I have a good example. I was mucking around on YouTube earlier when I came across this video about the Elizabeth Line. What struck me about it was that the young man in it seemed to have some rather autistic traits: that is, the way he seemed to fixate on certain details as well as the way he spoke reminded me of autistic people I have met. Of course I am not an expert by any means, but if I had to guess I would say that the guy met the criteria for being autistic.

Obviously I have no idea whether he has been diagnosed as having autism or not; yet it seems to me that the more important question is whether it actually matters. Would having such a diagnosis help him, would it burden him when a label which he can obviously live without? He may or may not happen to fit a set of criteria for a neurological disorder that are essentially arbitrary and change over time. What actual benefit would such a diagnosis be to him? It might entitle him to more support; but I think that ought to be weighed against the rather significant social burden that having a condition like autism can have.

On the other hand, a little later in my day I came across another example. I was on my trundle through Charlton, and I encountered one of the ladies I knew when I lived there. We used to be quite good friends,  but sadly just before I moved to Eltham we had a massive argument and since then she has refused to speak to me. Today, however, I noticed her sitting outside a cafe, and on the spur of the moment I decided to try to put things right.

I went around the corner and typed a short reconciliatory message into my speech app, before going back to play it to her. It would seem that my optimism was misplaced though as she still would not speak to me; and even when I sat there for ten minutes I was still met with the same sneering, contemptuous look. No matter how hard I tried or what I said, she refused to reconcile with me.

In the end I had no choice but to roll away, feeling a mixture of anger, frustration and bemusement. Such behaviour seemed abjectly immature – surely no grown adult could be so petty, or hold a grudge for so long! But then it occurred to me that perhaps this could be explained by neurology: if the woman is on the autistic spectrum, it would make her behaviour easier to understand and forgive. It certainly fits with what I understand an autistic spectrum disorder to be. On the other hand, that could just give her a ‘get out of jail free’ card which she does not necessarily deserve, effectively absolving her of personal responsibility for her abjectly infantile behaviour.

Thus the question is whether such labels can be useful: does telling someone they have autism do them any good in the long run? They will presumably go on behaving like they always have, whether you label it or categorise it or not. It might help us explain or understand the way certain people behave; but on the other hand that might just make things easier to dismiss.

The Spectrum To Meaninglessness

I know what autism looks like, probably better than most people. I grew up going to a special school where there were quite a few kids with severe autism and Profound and Multiple Learning Difficulties. Then, a few years ago, I spent some time volunteering at Charlton Park Academy, working with kids with various neurological conditions, including autism. I know what it looks like: it is a profoundly debilitating condition where people barely comprehend the world around them, how to communicate or how to look after their selves. It is nothing to be joked about or laughed at.

These days, however, the term is being used more and more flippantly. Claiming to be autistic seems to be some kind of craze or fashion. In the last couple of weeks, for example, we have heard both Boris Johnson and Elon Musk claim to be on the autistic spectrum, as if that somehow explains or excuses their behaviour. I obviously have severe problems with this. Medical conditions are medical conditions: they aren’t something you can just claim to have, when it becomes politically or socially fashionable. Nobody could suddenly claim to have Cerebral Palsy or Muscular Dystrophy, out of the blue.

Yet with Autism, the definitions seem to have become so vague that just about anyone can now claim to be on the autistic spectrum; any kind of antisocial or selfish behaviour can be excused by adopting the label. Parents seem to now do it in order to make excuses for their unruly children; individuals now do it in order to feel different or special. Behaviours which were quite recently perceived as perfectly normal, if slightly antisocial, now fall under the autism umbrella, frankly making a nonsense of the entire condition. Whereas CP and MD have clear, fixed definitions and causes, the definition of autism seems to be deliberately being made wider and wider.

The problem is, as I’m sure many others are pointing out, once you start labelling and pathologising behaviours or groups of behaviours in this way, they become ingrained or reinforced. Once someone starts thinking they are autistic or ‘special’, consciously or unconsciously they start to make such behaviours even more overt. Behaving in such a way has earned them attention, a niche, label, or some other form of gratification, so it becomes more obvious. The behaviour thus becomes more pronounced, so it becomes a self-fulfilling prophecy. It would be far better, in my opinion, to let these behaviours remain undiagnosed and uncategorised; to continue to see them as perfectly normal, if slightly flamboyant or eccentric, ways to behave. As soon as a label is attached to a set of behaviours which had previously been seen as normal, they becomes something else: something which people now seem to be wanting to attach themselves to, for social and political reasons. Frankly, having undergone a lifetime of social ostracisation and being treated as abnormal or different, I can’t see how it wouldn’t be preferable for people to want to continue to perceive themselves – and be perceived by others – as normal.

Autism is a very serious, profoundly debilitating medical condition. I am no expert in it, but I know enough to say that it is now being made a mockery of: people seem to be announcing they are autistic with very little understanding of what that really means. It’s part of the issue I started to outline here: When people choose to ascribe labels to themselves without understanding what that label means, that label gradually becomes meaningless; just as the wider the definition of a neurological condition becomes, the less intellectual or academic precision it has. My mind goes back to the profoundly autistic kids I knew at school: they couldn’t stick up for theirselves, so perhaps I should.