NICE guidance for managing children with autism

"The circle is now complete".

Like the end of another very famous trilogy (the original saga if you please), NICE, the National Institute for Health & Clinical Excellence or should that be the National Institute for Health & Care Excellence based here in good old Blighty have completed their evidence-based look at the autism spectrum disorders (as per the quite recent DSM-V diagnostic title) and formally published the last in their triad of guidance: Autism - management of autism in children and young people (see here). This follows my posting of the draft guidance (see here).

I've talked about the other strands of NICE guidance for autism before on this blog, covering pathways to diagnosis and autism in adulthood including the issue of medication and core symptoms. To recap: here in the UK, NICE are charged with providing the evidence-based clinical guidance on what does and doesn't work for diagnosing and managing all manner of health-related conditions.

With autism in mind, NICE were charged with trying to make some sense of the myriad of research results produced on the topic of autism, and offer something like a coherent set of national standards for autism; in particular focused on the core symptoms of autism. Not an easy task when faced with such a heterogeneous diagnosis complicated by all manner of possible comorbidities.

So what does the guidance suggest?

• Well, despite covering a sizeable proportion of all manner of autism intervention and management strategies, the message is a familiar one: a dearth of authoritative data on what might and might not work but social-communication strategies offer probably the best option including focusing on joint attention.
• I'm very pleased to say that throughout the document is recognition of the fact that autism can and does present alongside comorbidity and such comorbidity can affect symptoms including the so-called challenging behaviours.
• Anxiety receives some welcome attention, although I'm slightly hesitant to endorse the suggestion that CBT (cognitive behavioural therapy) should be the preferred route of tackling such anxiety. Talking therapy might very well have some effect for some people, but as per the study by Mazurek and colleagues (see this post), there's still a gap in the knowledge base about the role that anxiety plays when it comes to autism.
• I'm sure that some people will have picked up the guidance that neither antipsychotics, antidepressants or anticonvulsants should be used to manage the core symptoms of autism similar to the adult guidance.
• Even more that exclusion diets (including gluten- and casein-free diets - GFCF diets) should also not be used in the context of managing core behaviours. Personally, I'm OK with this. As per the more detailed guidance, the evidence for use of GFCF diets is still wanting in terms of methodological quality (including my own contributions to this area). That combined with the possibility that such diets might be targeting more peripheral areas of functioning such as inattention and hyperactivity (see this post) which then have a knock-on effect suggests that we aren't quite there yet in bring dietary intervention 'mainstream' into management guidance. The suggestion that more work needs to be done in this area should hopefully move dietary intervention up the list of research priorities... hopefully, as per recent investigations. And to quote: "You may also be offered a special diet to help with problems other than autism".
• Transition from child to adult services also gets a mention. Alongside the changes in things like SEN provision, one would hope that the cliff-edge that is post-16 provision should turn into more of step rather than a void.

What's missing from the guidance? Well in my view, whilst discussion is made of trials such as one by Jim Adams and colleagues on vitamin supplementation (see here) and the early work being reported on things like NAC (see here), none of these areas figure in the final summary guidance. There also appears to be no mention of the various amino acid, immunological or other biologically-mediated findings which is rather disappointing. That for example autism (sorry, the autisms) might also results from issues with branched-chain amino acids (see here) or PKU (see here) are important points; more so when you consider that simple interventions might actually be able to impact on symptom presentation. And then there is the whole mitochondrial story, everyone's favourite scrabble classic MTHFR and its link to folinic acid, vitamin B12, tetrahydrobiopterin (BH4)... the list goes on.

Appreciating that the evidence base around lots of areas in autism is still in its infancy, I take heart that NICE have cast an eye over autism and various facets of its presentation. That also it provides a roadmap for where research should be looking more closely is something else to take from the guidance and its potential ability to direct research funding into priority areas.