Earlier this month, the National Institute for Health and Clinical Excellence (NICE) launched a consultation on a draft clinical guideline covering the recognition, referral, diagnosis and management of autism for adults .

This guideline advises health professionals on how best to support adults with autism. They are considered best practice, and are read by health and social care commissioners across the UK. You can find out how the guidelines are used in the different nations of the UK here.

The draft guideline on autism (including Asperger syndrome) proposes several very welcome recommendations around diagnosis and support for adults with autism, including:

  • local multi-agency groups should be set up, with representation from a range of service areas, to take the lead on changing services locally
  • specialist autism teams - such as the Liverpool Asperger Team and Bristol Autism Spectrum Service - should be established in every area and equipped with the knowledge to offer diagnosis, training and support 
  • improved support for adults with autism who are experiencing mental health problems 
  • adults with autism, and where applicable their families and carers, should be more involved in the development of their own support plans.


NICE is now seeking comments on the draft guideline from registered stakeholders - this includes The National Autistic Society. We want to make sure that people affected by autism are represented properly, so this is where you come in.

We need to know your story:

  1. At what age did you/your relative or friend get a diagnosis and how long did it take to get?
  2. Who referred you/them for a diagnosis? (eg GP, teacher, social worker)
  3. What did they tell you/your relative or friend about autism after you got the diagnosis?
  4. What type of information would have helped you understand more about autism following your diagnosis? 
  5. What support do you/your relative or friend receive and where does that support come from? 
  6. Is there any other support that you think you/or your relative or friend need but are not receiving?


If you have a moment, please send your answers - and any other comments - about the draft guideline to policy@nas.org.uk by 20 January 2012.

The final version of the guideline should be published in June 2012.

This is the second of three sets of NICE guidelines on autism. The first was released in September 2011 and concerned the diagnosis of children and young people with autism. Another, due to be published in November 2013, concerns the 'management of autism in children and young people'.