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Wednesday, August 27, 2014

Labels for Unexplained Language Difficulties in Children: We Need to Talk

From BishopBlog

By Dorothy Bishop
August 23, 2014

"... diagnostic labels and criteria were being used creatively in disputes over access to services both by those seeking to obtain services for children, who could be accused of ‘diagnostic shopping,’ and also by those seeking to deny services (often due to financial constraints) who may use particularly restrictive criteria in order to reduce the number of children qualifying for services." 

This week saw the publication of a special issue of the International Journal of Language and Communication Disorders, focusing on labels for children with unexplained language difficulties. Two target articles, one by Sheena Reilly and colleagues, and one by me, are accompanied by an editorial by Susan Ebbels, twenty commentaries, and a final paper where Sheena and I join forces with Bruce Tomblin to try to synthesise the different viewpoints. These articles are free for anyone to access.

Terminological battles are often boring and seldom come to any consensus, so why are we putting time into this thorny issue? Quite simply, because it really matters. As we argue in the articles, having a label affects how a children are perceived, what help they are offered, and how seriously their problems are taken.

'Specific Language Impairment' has very poor name recognition compared to dyslexia and autism, despite being at least as common.

Furthermore, unless we can agree on some common language, it's difficult to make progress in research, and to discover, for instance, the underlying causes of language difficulties, how common they are in different parts of the world, or what interventions work.



I was first confronted with the full extent of the problem when I tried to analyse the amount of research and research funding associated with different developmental disorders (Bishop, 2010). There are other conditions, notably autism and dyslexia, where there is plenty of debate about diagnostic criteria, or even about whether the condition exists. But even so, the terminology is reasonably consistent.

For children's language difficulties, this is not the case - they can be described as cases of language difficulty, disorder, impairment, disability, needs or delay, with various prefixes such as 'developmental', 'specific' or 'primary'. Some researchers will use such labels with precise meanings, often excluding children who have co-existing conditions, whereas others use them more descriptively. This made it extremely difficult to do a sensible internet search to estimate the amount of research funding associated with children's language difficulties.

The confusion over labels has, I think, also contributed to the lack of public recognition of language difficulties in children. A couple of years ago, I joined together with Courtenay Norbury, Maggie Snowling, Gina Conti-Ramsden and Becky Clark with the goal of remedying this situation. We started a campaign for Raising Awareness of Language Learning Impairments (RALLI) (Bishop et al., 2012), and set up a YouTube channel to provide basic information.

We spent some time debating what terminology to use: "Language learning impairment" was our preferred choice, but many of our videos talk of Specific Language Impairment, simply because that is a more familiar label. The lack of an agreed label proved a real stumbling block for our attempts at public engagement, and we decided that, as well as producing videos, one of our goals would be to get the terminology issue discussed more widely, in the hope of achieving some consensus.

It was a very happy coincidence that Sheena Reilly and colleagues were crystallizing their own position on this question in an article in IJLDC, and that they, and the Editors, were willing to include my article, and the commentaries of other RALLI founders, in the published debate.

One thing that came across when reading commentaries on our articles was the disconnect between research and practice. One point on which I agree with Sheena and colleagues is that there is no justification for drawing a distinction between children whose language problems are comparable with below average nonverbal ability, and those who have a mismatch between good nonverbal skills and low language. Research has failed to find any difference between children with uneven or even nonverbal-verbal profiles in terms of responsiveness to intervention or underlying causes.

Such a distinction is, however, widely used in educational and clinical settings to decide which children gain access to extra support in school. Another issue raised by the Reilly et al paper is whether it is logical to use other exclusionary criteria, and to distinguish, for instance, between children who do and don't have autistic features in association with a language problem.

As Susan Ebbels noted in her editorial, in everyday settings, "diagnostic labels and criteria were being used creatively in disputes over access to services both by those seeking to obtain services for children (often parents and their lawyers) who could be accused of ‘diagnostic shopping’ and also by those seeking to deny services (often due to financial constraints) who may use particularly restrictive criteria in order to reduce the number of children qualifying for services".

We can't afford to ignore this confused situation any longer. The time has come to have a wider debate on these issues, with the aim of reaching a consensus about how terms are used. The Royal College of Speech and Language Therapists has set up a moderated discussion forum where people can give their views on the best way forward. Please do consider adding your voice: it is important that all those affected by this issue have a say, whether you are a speech-language therapist/pathologist, psychologist, teacher, health professional, legal expert, policymaker, a parent of a child with language difficulties, or someone who has experienced language difficulties. We'd also love to hear from those outside the UK - whether English-speaking or not. You can access the discussion forum here.

Finally, to raise awareness of this debate, during the week of 24th-31st August I will be taking over the @WeSpeechies Twitter handleas guest curator. On Tuesday 26th at 8.a.m. BST there will be a live twitter debate on this topic. Feel free to join in, even if you aren't a regular tweeter.

References


Bishop, D. (2010). Which Neurodevelopmental Disorders Get Researched and Why? PLoS ONE, 5 (11) DOI:10.1371/journal.pone.0015112

Bishop, D., Clark, B., Conti-Ramsden, G., Norbury, C., & Snowling, M. (2012). RALLI: An internet campaign for raising awareness of language learning impairments Child Language Teaching and Therapy, 28 (3), 259-262 DOI: 10.1177/0265659012459467

About Dorothy Bishop

Dorothy Bishop is a Professor of Developmental Neuropsychology at the University of Oxford, where she is Principal Investigator for the Oxford Study of Children's Communication Impairments (OSCCI). She has published books on handedness and developmental disorders, language development in exceptional circumstances, and children’s comprehension, as well as numerous research articles. She is a fellow of the British Academy and the Academy of Medical Sciences and has a supernumerary fellowship at St John’s College, Oxford.

As Deevy Bishop, she has published three humorous crime novels as Kindle e-books. The latest is The Case of the Disappearing Dongle.

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