Autism is a lifelong neurodevelopmental condition, the core features of which are persistent difficulties in social interaction and communication and the presence of stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests. The way that autism is expressed in individual people differs at different stages of life, in response to interventions, and with the presence of coexisting conditions such as learning disabilities (also called ‘intellectual disabilities’). People with autism also commonly experience difficulty with cognitive and behavioural flexibility, altered sensory sensitivity, sensory processing difficulties and emotional regulation difficulties. The features of autism may range from mild to severe and may fluctuate over time or in response to changes in circumstances.
A significant proportion of adults with autism across the whole autistic spectrum experience social and economic exclusion. Their condition is often overlooked by healthcare, education and social care professionals, which creates barriers to accessing the support and services they need to live independently. In addition, people with autism are more likely to have coexisting mental and physical disorders, and other developmental disorders. Some may have contact with the criminal justice system, as either victims of crime or offenders, and it is important that their needs are recognised.
There is wide variation in rates of identification and referral for diagnostic assessment, waiting times for diagnosis, models of multi-professional working, assessment criteria and diagnostic practice for adults with features of autism. These factors contribute to delays in reaching a diagnosis and subsequent access to appropriate services.
When the diagnostic assessment process works well, professionals, the person with autism and their family, partner or carer(s) communicate right from the start and the person with autism is involved in the decisions relating to their care. This lays the foundation for a long-term understanding between the person with autism, their family, partner or carer(s) and the professionals supporting their needs. However, many adults with suspected autism have difficulties accessing a diagnostic assessment. Even if they manage to obtain a diagnosis they may receive no follow-up support because of the absence of appropriate services or an agreed care pathway.
In this guideline ‘autism’ refers to ‘autism spectrum disorders’ encompassing autism, Asperger’s syndrome and atypical autism (or pervasive developmental disorder not otherwise specified). The Guideline Development Group recognises, however, that different individuals and groups prefer a variety of terms for autism including autistic spectrum condition, autistic spectrum difference and neurodiversity (in recent Department of Health, National Audit Office and Public Accounts Committee documents, ‘autism’ is used to cover all of these terms).
This guideline covers the care provided by primary, community, secondary, tertiary and other health and social care professionals who have direct contact with, and make decisions concerning the care of, adults with autism.
A number of recommendations in this guideline have been adapted from recommendations in other NICE clinical guidelines. Where this occurred, the Guideline Development Group was careful to preserve the meaning and intent of the original recommendations. Changes to wording or structure were made in order to fit the recommendations into this guideline. In all cases, the original source of any adapted recommendations is indicated in a footnote.
The guideline will assume that prescribers will use a drug’s summary of product characteristics (SPC) to inform decisions made with individual patients. In this guideline, drug names are marked with a footnote if they do not have a UK marketing authorisation for the indication in question at the time of publication. Prescribers should check each drug’s SPC for current licensed indications.