Care of autistic children & young people: NICE speaks

The emergence of NICE guidance has undoubtedly helped the less glamorous corners of healthcare to shout a little louder about the quality they are able to deliver. Having produced the sensible and clear guidance on diagnosis in 2011, a similar team led by Gillian Baird has come up with another document which I hope will be useful in the ongoing management of people with autism. The draft can be accessed here.
(two disclaimers: I know and respect Gillian, and I haven’t quite got round to finishing the full version of the guidance)
The guidance essentially reiterates the obvious point that health and social care have an ongoing duty of care to people with autism. They do not need to make the point that in many areas services for this population are woeful.

  • They want the environment to be adapted a far as possible for people with autism, they want all professionals working with this group to have (quite extensive) training.
  • They want us to consider a social-communication intervention for the  core features of autism. They are vague about the details, and consider is a pretty weak recommendation, but I think this reflects the evidence base.
  • CYP with autism to have a step wise assessment when they exhibit challenging behaviour,
  • First excluding modifiable factors such as transition, physical problems, and inadvertent reinforcement.
  • Second, performing functional behavioural analysis of the unwelcome behaviour.
  • Thirdly for anti-psychotics to be trialed under specialist supervision.

All of this is good stuff, in my view. My purpose in posting this is two-fold

Mainly I want people connected to autistic CYP to tell me what’s missing (and soon as the consultation closes tomorrow)

Also, I wanted to make the point that in the context of rapidly shrinking resources, those services that border on the responsibilities of other agencies suffer most. So in physical health, cancer and heart disease do well, in mental health psychosis services are rightly retained, and in social care child safeguarding is understandably top priority. So the messy, complex, long-term management of CYP with autism, which falls precisely between the remit of these areas (and others), will tend to suffer, We have begun to see this locally, and stories from elsewhere are all grim currently, although we simply don’t have a good picture of the state of services nationally.

This NICE guidance then, should act as a catalyst for improvement and integration. Sadly NICE is sharply curtailed in what they can force local commissioners to spend on their recommendations. For this reason it will require a concerted campaign by everyone concerned with the welfare of autistic people to get them implemented effectively at a local level. So this is, in a sense, a preliminary call to arms. Stand ready, folks.

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