Parents want children to be labelled autistic

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One of my former trainees, now an experienced consultant child psychiatrist, shocked me with an admission recently: ‘You will never believe how things have changed,’ he said. 

‘I’d say 75 per cent of the kids I see have either got ADHD or they are on the autistic spectrum.’

There was no doubt in his mind about this, but I saw things a different way. ‘Surely not,’ I told him. ‘What’s really going on is that you have chosen to diagnose them as that.’

Let me make one thing clear: I do not doubt the existence of autism spectrum disorder and ADHD (Attention Deficit Hyperactivity Disorder, to give it its full name). Actually, I am convinced we have underdiagnosed these hugely debilitating conditions in the past.

But today, I believe such conditions are vastly, and dangerously, over-diagnosed. As a former president of the Royal College of Psychiatrists, I am convinced that something else is going on — something that most parents don’t want to acknowledge and won’t thank me for saying.

Of course, autism and ADHD can wreck the lives of children and their families. And I have seen many genuinely heartbreaking cases of children struck down with these conditions.

But, very often, the children I see with these diagnoses plainly have not got these conditions at all. Instead, they happen to be troublesome children reacting to awful situations in their families.

To put it bluntly, they are heartily sick of being tossed around on a sea of adult wishes. But, instead of being listened to, they get labelled with a disorder. These incorrect diagnoses are deeply damaging. Yet, I am one of the very few child specialists who are fighting against this trend.

So why is this chilling over-labelling of the nation’s children taking place? First and foremost, it is my view that some parents love a diagnosis. It lets them off the hook because it means their child’s behaviour is not their problem or their fault. They do not have to address their own role in their children’s unhappiness.

Secondly, a behavioural diagnosis on a child is seen by many as some kind of badge of honour. For example, a diagnosis of Asperger’s Syndrome — a condition on the higher functioning end of the autism spectrum that is often linked to super-cognitive function — is something you’ll find many parents boasting about.

The parents can talk about it in the pub as a recognisable condition they have seen and heard about on TV. This is a condition, they say, not a distressed child. ‘Oh, I’ve heard of that,’ their companions will inevitably say. ‘Perhaps our Johnny has that, too.’

In some cases boasting of these diagnoses can be a middle-class parent’s way of dodging responsibility for how their child has turned out. I won’t be popular for saying it, but a diagnosis can be a guaranteed way of reducing the stigma of their child’s awful and embarrassing behaviour among family, friends and teachers.

I have seen many genuine examples of children with autism, and salute the loving parents who work tirelessly to help their children.

But I remember an eight-year-old boy whose parents were convinced he had ADHD due to his disruptive behaviour at school. I wasn’t so sure. I refused to prescribe him with Ritalin-type medication until I had seen this behaviour for myself.

For while the majority of my fellow child psychiatrists prefer to consult patients from behind the safety of a desk, a white coat and a stethoscope, I saw the vast majority of kids and families out in their communities, where I could learn how their lives work.

I would think nothing, for example, of driving 15 miles to see a child in a difficult home environment. We can’t see what the problem is until we have seen it first-hand in their homes, playgrounds and classrooms. So I went to see this boy at his Scout group one evening. He was engaged, excited and — for his age — impeccably behaved.

So how could he have ADHD? Could there be a much more straightforward explanation — not a medical one, but simply that the boy’s bad school behaviour was driven by stress at home, where his parents worked long hours in professional jobs? Subsequently, the family went on holiday to Majorca, which proved a blessed opportunity for everyone to relax and share precious enjoyable time together.

The boy’s parents were amazed by his improved behaviour. They attributed this to him not drinking milk during the trip (they had started reading all about the supposed ‘dietary links’ to ADHD, rather than examining their own actions).

But no matter. I didn’t argue with the milk theory. The truth was the child had enjoyed carefree attention from his parents. He was a happier boy. The end result was a good one and it wasn’t worth the battle to make a point.

My approach to the subject of over-diagnoses comes from my own deeply personal experience. I have long suffered from recurrent depression.

I know it is rooted in relationship troubles within my own family — largely from my emotionally distant father who so disapproved of my approach to life.

The stultifying home atmosphere in which I grew up made me burn with anger as an adolescent. As a result, I got myself expelled from school for punching a hole in a door at the age of 17.

My difficult childhood has caused me much anguish, but I have channelled that misery and there is no doubt it has helped me enormously in my professional life. Put simply, I don’t think you can truly get close to understanding the complexities of other people’s problems without first getting close to the unfinished bits of your own life.

Meanwhile, the vast majority of modern psychiatrists and doctors are forced to consider behavioural diagnoses such as ADHD and autism because it enables them to be seen to do something, and offer some resolution, and they can do it speedily from behind their desks.

Their working environment leaves no choice but to offer diagnoses because their jobs are measured in terms of data rather than human distress — as ‘client throughput’ and numbers of diagnoses — and the time they have to spend with ‘patients’ is so limited. As a society, we seem to have forgotten that children are by nature inconvenient, especially if they demand things, question things and are difficult in the school classroom.

I lost count long ago of the number of children who were sent to me by schools wanting them diagnosed with ADHD and autism and given pills, when those children were the products of awful situations. My wife, for example, worked as a headmistress in a junior school on my patch in Blaenau Gwent. One of her teachers had demanded that a boy was excluded from class until he had been diagnosed with ADHD and medicated.

‘That must be Tommy,’ I said. Indeed it was. We both knew him. Instead of seeking expulsion, my wife took Tommy to her study, gave him a cup of tea and asked him to wait while she made some work calls. When he had calmed down, she let him talk about his home life. His mother, it transpired, had had a succession of inappropriate boyfriends, his brother was in and out of prison, his sister was a prostitute. He cried for a while, collected himself, then went back to class and was as good as gold for the rest of the day.

As for the following day? Who knows. We can only ever hope that by offering such understanding to a child that they can avoid being labelled and start to believe they are a person worth knowing in their own right.

One important relationship will change their life. That is hopefully what I have achieved in my work.

I saw children and gave them space and the trust to reveal to me, for the first time, what they were struggling with. If they are allowed to tell their story, there is always a way we can work together to try to give that story a different ending.

That is far away from the mainstream psychiatric model in the NHS. A lot of fellow professionals tell me that they would love to do this type of thing, too, but they say that they ‘haven’t got the time’.

We need to change the system. Of course, more money would help. Budgets for child psychiatry services have shrunk by some 16 per cent over recent years.

But it is not just a matter of finances. In standard NHS children’s mental health services, everyone is referred to a consultant child psychiatrist before they can see anyone else on the team. This results in enormous waiting lists.

If the children ever get to the end of that list, they are almost bound to come out with a label that the psychiatrist has managed to squeeze them into.

That can be very unproductive for the child. It colours their life and it is there for life. A label does not acknowledge, for example, the huge pressures that might be on a young child’s shoulders because of the terrible condition of their parents’ marriage, for example.

In Gwent, where I worked for the last ten years of my career, we had no money, so we had to find different ways to do things. So all the senior representatives of the children’s services met each week to talk about problem families.

We then decided who in our teams were best placed to help them. We all trusted each other.

As a result, the number of people I had to see face-to-face went down because I did not have people referred to me, inappropriately, as the child psychiatrist.

We also tried to bring parents into the process, too. The parents often felt as miserable and guilty as their children, so I strove to find ways of drawing them in. This is something I would like to see psychiatrists and the NHS do more of.

It is not a matter of chucking money at the current NHS system so that we have a slightly shorter waiting list for the psychiatrist at their desk. We have to create a very different service.

You can try to keep difficult behaviour at bay by wearing a white coat, but you won’t get far. Working with children and families has taught me that we are all vulnerable to acting out our fears and weaknesses. We need to address that as people, as a society, and as a health service.

It’s the human condition – and it does not need a medical label.

 

 

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