Autism

Is it being over-diagnosed or just being recognised more?

I’ll let you into a secret: I’m probably on the autism spectrum.

When I was very young, roughly up to my fifth or sixth birthday in the early 1970s, I almost didn’t speak at all, and had a habit of jumping up and down on the spot when quite excited/animated about anything. If I wasn’t jumping I was fidgeting. My parents took me to Silverstone and a couple of air shows when I was very young and I absolutely hated the noise (to the point of crying loudly at Silverstone). My dad, an engineer who was very interested in all that stuff, probably wondered who on earth his only son was going to turn into.

I also used to wear the same featureless clothes as I went through childhood - a sister still ribs me occasionally about my infamous ‘brown jumper’. I hated the texture and sight of buttons (‘koumpounophobia’) which meant that wearing my primary school uniform was awkward at first, until I realised it meant I ‘fitted in’ at school. To this day, I often don’t wear buttons and feel much more comfortable when I don’t. I also felt and still do feel uncomfortable with social greetings, especially ‘Merry Christmas’, perhaps because it only comes round once a year and is therefore harder to get used to. I often return someone’s ‘Good Morning’ with a simple ‘Hello’ because it feels less awkward.

However at primary school, the jumping marked me out, prompting a much-loved infant teacher to nickname me ‘Jumping Jack Flash’. I’d also walk in a leant-forward way, moving too much of my weight onto my toes while moving forward, causing a walking-bounce effect that looked odd. Not quite walking on tiptoes but close to it.

But one thing I was blessed with was intelligence. I soon saw that the jumping in particular marked me out as odd so I stopped it. And then some cruel kid took the mick out of my walk, so I coached myself to walk more upright and without the bounce. I also realised that keeping quiet wasn’t going to get me anywhere in life, so I came out of my shell more - probably quite awkwardly at first, saying inappropriate things, but this taught me that the inappropriate could also be funny and, when the laughs came, I warmed to becoming funny in different ways. Looking back, I wonder if there was a fair dose of ‘laughing at’ rather than ‘laughing with’ among my audiences, but I honed this to some extent as time went by. Even now, I can still make people laugh, but I also have a very wide sense of humour ranging from the gentle to the savage and the downright inappropriate. I have to sometimes consciously temper it, but age/wisdom helps with that.

As I say, the jumping stopped a long time ago. Or did it? What actually happened - and this went well into adulthood - was that when I was safely alone and hidden away, I could release that energy by pacing around and tensing up, including in my facial expressions, which would be a weird thing for someone else to see.

As it turned out - I’m now 60 - the intelligence I had been blessed with took me a long way in life, as did my upbringing and the gentle semi-rural environment in which I grew up. My mum didn’t question my oddities. So I have been massively fortunate with that start in life. I ended up with a lucrative career in the tech industry (obviously) and, as a consequence, I haven’t had to scratch around for money all the time. My wife is also laid back and doesn’t demand much of me. But I still have my foibles and I still don’t seek out social situations. I prefer my own company.

I never really imagined I ‘had’ something. This was just who I was.

Autism in children

It was when my kids started growing up that I was pushed into thinking about all this much more. For obvious reasons, I don’t want to go into great detail about my kids but let’s just say there’s a lot of autism and ADHD in my family.

Reading a diagnosis for one of them and then reading up on the subject in general, I couldn’t help seeing myself in what I was reading. I have since been to parent workshops and, over the years, have met others either with autism themselves or with autistic children. I therefore have a very direct interest in it and what it can mean in terms of life chances and the challenges along the way.

But I’m still not diagnosed. What would be the point? What would it prove? It would be like doing one of those ancestry DNA tests to find out if you have some Italian in you. Somewhat interesting, but doesn’t really add anything of great value, except perhaps as a confirmation/validation (if it did prove you had Italian in you).

And my life turned out fine. I don’t need to know. I probably have autism, but so what? It would now just be a fairly blunt personality descriptor; a label without a cause.

Since being on the autism journey through the prism of my kids, it has become possible to see it in others, not least my own dad, and to see the wide range of ‘features’ caused by it, some of which, like me, do not actually represent a disability as such.

The range of autism experience is wide. It is, after all, called a spectrum, and not for nothing. That is important, but it was not always the case. The American DSM (Diagnostic and Statistical Manual of Mental Disorders) which has developed through multiple versions over decades has steadily softened and widened the meaning of autism. It is not a simple case of autism becoming more recognised (on the original definition) and therefore driving up numbers - the definition itself has moved, bringing more and more people into the net.

There are some people with autism who really cannot function socially - I’ve met a few - and consequently they cannot easily live full independent lives for a long time, if ever. But there are those who can and do, some even in the public eye. Sometimes it requires great effort (and ‘masking’) to achieve social acceptance.

The purpose of diagnosing someone with autism or indeed anything should be to bring greater understanding to what is going on and then to provide much-needed treatment. But what if there is no serious impairment to their lives beyond the usual differences and challenges arising from the human condition? What if they don’t need treatment? Further, what if a diagnosis is then taken by the patient to become a part of their identity such that it gives them cover for why they can’t/won’t do certain things? In other words, what if it has the effect of reducing or maybe even removing their agency in certain areas? ‘This thing I have prevents me from doing X’.

I can see that it has the ability to diminish a person.

Autism as a culture war

The political Right has been steadily but tentatively moving into the subjects of autism and ADHD - the two can often come together and are increasingly referred to as ‘AuDHD’. Mary Wakefield at The Spectator, Matthew Parris, Talk TV’s Julia Hartley-Brewer, Kemi Badenoch, Nigel Farage and others have commented on it, and it can look like its own emerging culture war.

Through this Rightist lens, AuDHD may be viewed as ‘something that wasn’t a thing back in my day’ and therefore somehow illegitimate. That leads onto claims of ‘over-diagnosis’ to explain the rapidly increasing numbers diagnosed with AuDHD. Hartley-Brewer has even said something along the lines of ‘ADHD used to just be naughty children’ before going on to blame parents for not bringing them up properly. I’ve certainly been on the receiving end of this suggestion - of feeling judged as a parent of struggling kids. It is immensely aggravating. The populist Right narrative is also interlocked with one about ‘the worried well’ and another about ‘big pharma’.

With a big rise in benefit payments to people with AuDHD, and the overlap with gender dysphoria, the Right’s distrust of AuDHD is complete - a condition that is to them, at worst, made-up, and at best, pathologising ‘normal difference’.

To them, it is a personality type that maybe requires extra effort to fit into the world but that you will nonetheless fit in somewhere. You just have to try. To approach this in a softer way is seen as creating a new group of perpetual victims, each with a call on the state.

Autism groups have of course pushed back against these narratives, as have Centrist and Leftist groups.

The trouble here is that the definitions of autism and ADHD have widened and softened over time as our understanding of them has changed. It is thus being recognised more. Where there used to be only a narrow subset of severe cases and thus genuine disabilities, now a huge number of people including celebrities are claiming to have the conditions. This has had the effect of creating enormous waiting lists for people seeking a diagnosis. Someone with severe disabling autism is now in the queue with people who merely jump up and down and have a phobia of buttons. The queues may also include much older adults seeking confirmation/ validation.

The tests used to diagnose these conditions involve a lot of subjectivity. AuDHD does not come up in, say, blood tests or genetic tests; it is driven by questionnaires. I was surprised how limited the diagnosis process was/is. These diagnoses are usually managed and interpreted by highly qualified by practitioners looking at wider contexts, but they can be also driven by private operators who know what the patient (or their parents) want as an outcome, often to get extra support at school and extra time in exams. Furthermore, there is a lot of self diagnosis going on using internet-based tests. It may not be at all wrong to talk of ‘diagnosis creep’.

Also, is a diagnosis actually the best thing for the person? We are good at diagnoses in general because we believe they are instinctively always and everywhere ‘a good thing’, but maybe we need to question whether this is true where there is no significant impairment involved, at least none that can (or should) be treated. I’ve seen some AuDHD diagnoses cause the patient to lean into the resulting AuDHD label, rather than trying to find ways to mitigate it. After all, a diagnosis may make them more interesting; it may give them (and onlookers) a reason why they do things a certain way or may make them claim that they can’t do certain things at all. More negatively, the label can make them feel trapped - it may be ‘just who I am but this is not who I want to be’. It can be like carrying a monster on your back that you believe will never leave you. That can lead to greater issues with anxiety, depression and all sorts of other possible issues. In that scenario, the sufferer could potentially go on a downward spiral, not able to take responsibility for their lives because they feel they are not in control of their lives.

A possible way forward?

In my opinion, there is a conversation to be had here about whether we as a society have got the approach to AuDHD right.

The immediate difficulty in raising this prospect is the wide definition of these neurodevelopmental conditions. Say ‘autism’ to anyone and each will think of an autistic person they know or are aware of, each with markedly differing abilities/disabilities. Someone’s neurodiversity is another’s genuine neurodisability.

The other difficulty in going down this road of questioning how AuDHD is approached is the risk of getting drawn into the simplism of the Right. We already know the Rightist theme of distrusting experts - in this context, the experts are represented by the DSM, the National Autistic Society, MIND, and many others with first hand experience of it, some of it medical. The Right also deploys sweeping statements such as ‘ADHD does not exist’ (as per Parris and Hartley-Brewer). It very much does exist, as anyone with direct experience of it will confirm.

Is it being over-diagnosed? Possibly; probably, even. But it is probably being simultaneously under-diagnosed, as there are still people out there who have not yet sought but maybe should seek a diagnosis.

So this is about having sensible conversations about where the line between AuDHD and ‘human difference’ actually lies and how one can more rigorously apply judgments to that line.

I suggest we may have overreached in diagnosing AuDHD - no, not because the Right are claiming we have, but because of my own experience: myself, my kids and indeed a wider network of neurodiverse people that I’ve met through the years.

My opening suggestion here is that cases should be judged on whether a significant life-affecting impairment (a) exists, and (b) can be safely treated towards a better outcome. If either one of those do not apply, practitioners should be considering harder whether it is really in the best interests of the patient to go forward to a formal diagnosis, or instead to consider counselling about how to live with one’s ‘features and conditions’.

But I’m under no illusions that this may prove very difficult. People feel they have a ‘right to know’ and as long as Autism and ADHD exist within the definitions set down for them, the medical profession is going to struggle to push back against such diagnoses. This is more true where people’s children are involved, along with the possibility of getting more support and exam time.

Maybe an alternative approach concerns how a diagnosis is delivered and what guidance is given at the point of diagnosis. But I’m not sure that will work very well either where a child is involved. Some children may receive the diagnosis with a shrug; others as a life-changing moment in the wrong direction. For some, the problem is the diagnosis.

Concluding thoughts

All of this is my very personal perspective. I claim no medical or similar expertise on the subject, and so this piece should be taken in that vein. But my own experiences suggest we need to start playing down mild AuDHD, while simultaneously giving greater focus to the severe forms of it. For some, AuDHD can indeed be a superpower and that is the positive frame for it; but for many it is anything but, and there needs to be a process of coming to terms with it and applying it in the world in which we live (which will often make no allowances for it). Some clinicians are starting to recognise that a conversation is needed here. We’ve also recently had a government report on the situation.

As I find is often the case, the Right ‘might have a point’ of sorts. But as always, it is wrapped up in sweeping, populist nonsense that completely and counter-productively neutralises anything that might have been worthy of consideration.

Better conversations must be possible on this, as on much else.

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