What's in a name? Diagnostic labels matter

Here’s a quiz for you. Out of the following celebrities, who had ADHD, who had dyslexia and who had bipolar disorder?

  •          Albert Einstein, Justin Timberlake, Catherine Zeta-Jones

Odds are that you have heard of all three of these disorders, even if you can’t link them to the celebrities (the answers are dyslexia, ADHD and bipolar disorder respectively). You may even have friends or family who have a diagnosis. And you can probably have a good stab at describing what the main symptoms are.

But do you know anyone who struggled to learn to talk as a child?  If so, do you know what disorder they have? It’s not autism, it’s not dyslexia and it’s not ADHD.  What is it?

The chances are that you don’t know what label to use. And if you do, the person sitting next to you would probably use a different label. And this is because, strange as it may seem, we don’t have an agreed diagnostic label for children who have significant difficulties learning language, despite the fact that about 10% of children in the UK struggle to learn to talk.

Coming up with such a label was the main topic of conversion at a #CATALISE meeting I attended at Oxford University in January.

At first sight, this issue - what label should we use to describe language learning difficulties -   seems a trivial one. I have to admit that initially I thought: Why does it matter how you label the problem -  specific language impairment, developmental language disorder, primary language delay? Surely what matters is that you identify who these children are, work out where their difficulties lie, and provide the necessary help.

But throughout the weekend, I discovered I was completely wrong. Inconsistency of labelling is perhaps one of most significant problems facing these children, their parents and the practitioners who work with them.

Why the label is so important.

On the most basic level, think of the effect on parents whose children have just been identified as having a difficulty with language.  Where would you go for information in the first fraught few days after you child is diagnosed?  If you’re anything like me, you would go straight to Google to research the problem (other search engines are also available). But which search term would you use?

In her opening speech, Dorothy Bishop explained that there are currently 168 different possible labels, 130 of which are used at least once, and 33 of which are used over 600 times on Google Scholar, a popular academic search engine. If your therapist has given you a diagnosis of Specific Language Impairment you are likely to access vastly more information than if your therapist has told you it’s Developmental Language Disorder. 

The terms used to define your child’s problem will also affect how easily you access support groups. The charity Afasic provides important resources for parents of children with language impairment, but you won’t access their website by entering Specific Language Impairment into Google. Compare this with the ease of accessing online support for autism (the National Autistic Society is the first entry that comes up when I enter autism) or dyslexia (the British Dyslexia Association is the 3rd entry when I enter dyslexia). 

Inconsistent labelling also makes informal support relations difficult. Your cousin’s daughter in Aberdeen may have the same difficulties as your own son in Plymouth (language difficulties have a significant genetic component, after all) but you may have no idea of this, since her speech and language therapist will likely use a different label from yours. In fact, both children may not be given a label at all, since many therapists will not provide a precise diagnostic label.  This doesn’t happen with other developmental disorders; if your son has autism and your cousin’s daughter has autism, you’ll both know!

Also consider this; if there is no agreed label for the difficulties your child experiences, how are you going to convince your child’s school, health visitor or GP to provide you with the extra support you need? In the age of austerity, you can understand why schools are reluctant to spend money providing extra support for children who haven’t been given a precise diagnosis. Identifying a child as having a “problem with language” just isn’t going to cut it.

To receive the specialist help your child needs, you need a diagnosis. And you need a diagnosis that is recognised by national government, by NICE, by the NHS, by Public Health England, by all local authorities, by schools, by health visitors, by GPs, and by all speech and language therapists. If different members of your child’s support team are all using different terms, they aren’t going to get very far.  I talked to one therapist whose team had to change their preferred name - developmental language disorder- because their own computerised record system didn’t recognise it, let alone the other professionals they work with. A lack of shared terminology is bound to lead to a lack of shared understanding, both of the child’s problems and the optimal solutions.

Finally, and perhaps most importantly, if we can’t even define the problem, it is very difficult to persuade governments and commissioners – the people who decide how to spend tax payers’ money – that they should invest in its solution. There was a lot of talk in the final session of the meeting about how to raise awareness of language impairment and of the damage that can result if it goes untreated (children with a language impairment are less likely to do well in school, are less likely to go to university, are less likely to hold down a well-paid job, and are more likely to suffer mental health problems).   

A whole range of ideas were discussed about how to raise awareness; from identifying celebrities who might help promote the cause (c.f. Stephen’s Fry’s work for bipolar disorder), through developing National Service Frameworks and NICE guidelines for treatment, to lobbying MPs and peers.  But none of these will work if we’re all using different labels to describe the problem. A rose by any other name may smell as sweet, but it’s very difficult to advertise its scent if no one has a clue what you’re talking about.

The work of the #catalise team “Identifying language impairments in children: Building a multinational and multidisciplinary consensus” is headed by Professors Dorothy Bishop, Maggie Snowling and Trish Greenhalgh at the University of Oxford. Follow them on Twitter using the hashtag #catalise.  


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