Children with language disorders get a raw deal (again)
You’ve probably heard that the DSM – the manual that guides clinical and research diagnosis – is changing. And if you know that, it is probably in the context of some major changes in DSM-V to the diagnostic criteria for autism spectrum disorder (ASD) and the introduction of Social Communication Disorder. I’m not going to talk about the changes to ASD here as there has been extensive coverage in the media, on blogs and in prestigious academic publications.
What you probably haven’t heard anything about at all is the proposed changes to Communication Disorders. I personally have seen no discussion of it and yet the proposals are fairly radical. There has been an abolition of the distinction between expressive and receptive language disorder. Originally, there was a proposal to distinguish ‘specific’ language impairment from general language impairments, and to introduce ‘late language emergence’ as a new diagnosis. As I was gearing up to blog about this, everything changed. There are now three disorders proposed: Language disorder (LD), Speech disorder (SD), and Social Communication Disorder (SCD). There are no core criteria for LD, just a list of symptoms that includes spelling, reading decoding and comprehension, vocabulary, grammar, narrative, expository and conversational discourse and other pragmatic language abilities ‘individually or in any combination’. As yet there is no published rationale for this change. Similarly, SD includes articulation, dysfluency (stammering), voice disorders, and cleft lip and palate. As yet there is no published rationale for this change either. SCD seems to be the only one that includes exclusionary criteria – it is defined as problems with narrative, expository and conversational discourse not accounted for by deficits in vocabulary, grammar, non-verbal intelligence or a restricted repertoire of interests and behaviour (I tried to find such individuals for my PhD– it didn’t work). Although there is a published rationale for the introduction of this disorder, as far as I am aware there is no gold standard assessment with which to diagnose it.
I started wondering who was responsible for making these decisions on behalf of me, my profession and the children I work with most frequently. Luckily it is easy to find out. There are 13 people on the DSM-5 working party for neurodevelopmental disorders and their remit includes the most common disorders of childhood: Communication Disorders, ADHD, Specific Learning Disorders (including dyslexia and poor reading comprehension), Motor Disorders, Intellectual Disabilities and of course, ASD. One might reasonably expect that the 13 people on the working party would have a range of expertise that covers these disorders and the co-morbidities amongst them. When I looked at the list of names I recognised most instantly as eminent scholars and clinicians responsible for a large body of research that I greatly admire. But all of it focuses on autism spectrum disorder! Every member of the working party declare some expertise in ASD; seven of them work exclusively on ASD. There is only one speech-language pathologist on the working party – a real shock given that all of the disorders they cover are associated with speech and language difficulties. Yet I can’t help but think that her contribution is somewhat diminished by the fact that she too works exclusively with young children with ASD. In fact, the only person in the working group that has ever published anything on children with language disorders who do NOT have ASD is Gillian Baird, OBE. I’m super proud of the fact that she is one of our SCALES team, but as a consultant paediatrician, I’m sure her expertise is used more broadly within the group.
I shouldn’t be surprised – in 2010 Dorothy Bishop published an article demonstrating that in relation to prevalence and severity estimates, language disorders are woefully lagging behind in research publications and research funding (especially compared to ASD, which punches well above its weight on both counts). There are numerous reasons for this no doubt, but two things come to mind. First, the profession that serves children with language disorders, speech-language therapy, is dominated by women and has historically been less valued (I think) than other professions such as psychiatry and psychology. The second reason is that the nature of the disorder means that very often parents and families are not always in a position to advocate for a better deal (though organisations like Afasic certainly help). I’d like to change both of those things.
So DSM-V: if you need some fabulous SLTs with research and clinical expertise to help you out, here are some recommendations for you. First and foremost, Professor Rhea Paul – she’s probably had direct experience of working with almost all of the populations you cover and literally wrote the book on Language Disorders (from Infancy to Adolescence). She was also on the DSM-IV working party so her absence here is baffling. Or how about Bruce Tomblin? He is responsible for the largest and most influential population study of language disorder to date (watch this space Bruce!) and knows a thing or two about how non-verbal abilities relate to language disorder over time (amongst many other things). The Speech Disorders are many and varied and require highly specialist knowledge for diagnosis and treatment, which I don’t have, but should be considered. I am amused by all of the press surrounding SCD – you’d think no one had ever thought of it before! Yet there is a substantial literature provided by Martin Fujiki and Bonnie Brinton, Joanne Volden and the UK’s own Catherine Adams, who as far as I’m aware is the only person to have conducted a randomised controlled trial of social communication intervention. I realise this is a very short and Anglo-American specific list, but it is at least a start. And hopefully our European SLTs will be working on the revisions to ICD-10!
The second thing I want to do is increase public awareness of language disorders. If people and policy makers were more aware of language disorders and the impact they can have on social acceptance, well-being, academic attainment and future employment capacity, perhaps we would see more balanced research investment and provision for all children with developmental concerns. To this end, I’m delighted to be a founding member of RALLI (Raising Awareness of Language Learning Impairments), along with Dorothy Bishop, Gina Conti-Ramsden (another SLT!), Maggie Snowling and practicing SLT, Becky Clark. We hooked up with Team Spirit to produce a range of videos that include children and young people, clinicians and researchers living with and working with language disorders. In the first week of release we’ve had over 4000 views from all over the world!
So while I’m not too optimistic about DSM-V, I am optimistic that these initiatives, in addition to the SCALES project, will bring a better deal for children with Language Disorders. Watch the videos here, then spread the word!