Recognition, referral, diagnosis, and management of adults with autism: summary of NICE guidance

Autism is a lifelong condition characterised by difficulties in social interaction and communication and by rigid or repetitive behaviours; it affects about 1.1% of adults.1 Although some people’s autism is diagnosed in childhood, for every three known cases, there are two individuals without a diagnosis who might need assessment, support, and interventions for autism at some point in their lives.2 Four out of five adults with autism find that obtaining a diagnosis in adulthood is difficult or not possible,3 and many who have all the core symptoms do not receive a formal diagnosis.4 Particular problems arise in identifying high functioning autism (Asperger’s syndrome), which may not be recognised until adulthood5 or may be misdiagnosed as depression, personality disorder, or a psychotic illness. Inadequate identification and assessment of adults with autism not only leads to inadequate care but can also result in inadequate recognition and treatment of coexisting mental and physical health problems. Whereas care for children and young people is relatively well coordinated6 this is often not the case for adults. Falling between and being passed around services is a particular problem for adults with autism who have an IQ over 70 and do not have severe and enduring mental illness, as they may be excluded from both learning disabilities and mental health services.3 Social and economic exclusion affects a large proportion of adults with autism. Unemployment or underemployment is a considerable problem for adults with autism, including the 44% of those who do not have a learning disability,7 with almost 90% of this group unemployed.8

This article summarises the most recent recommendations from the National Institute for Health and Clinical Excellence (NICE) on autism in adults.9