It wasn’t until 1980 that autism was included in psychiatric classification systems, and it was 1994 before the diagnostic criteria for Asperger’s syndrome was established. People who may meet the criteria but who were born prior to this time are unlikely to have been identified and diagnosed. Thus, some people reach adulthood without ever having received a diagnosis of autism.
The National Autistic Society estimates the number of children under 18 with Autism Spectrum Disorder (ASD) is 133,500 - a prevalence rate of around 1 in 100. Although no prevalence studies have ever been carried out on adults, children with ASD grow up to be adults with ASD so there could be over 500,000 people who have ASD.
A GP seeing 1,500 adults (aged between 18 and 65) over a typical six-month period may therefore expect to see two patients who have undiagnosed ASD. If each GP in England were to see two adults with undiagnosed ASD every six months, this would suggest up to 120,000 adult patients are presenting with suspected undiagnosed ASD each year.
Only a proportion of people with ASD, perhaps around 50%, have a Learning Disability as well. It is likely therefore that over 50% of those with ASD have an IQ in the average range, and a proportion of these will be very able intellectually.
Some people with ASD may not come to the attention of services as having special needs, because they are being supported by their family. Others may have learned strategies to overcome their difficulties with communication and social interaction.
People with undiagnosed ASD do not often present to health or social care services because of the core symptoms of autism but are more likely to present with mental health problems or with a social problem arising from the autism, typically anxiety and depression.
Considering the current and future demand, ASD and undiagnosed ASD place a great pressure on GP practices, filling up waiting lists and waiting rooms. Failing to effectively address these issues brings major clinical and fiscal demands.
ADRC’s referral criteria are very much in line with the recently published draft NICE Guidelines.
Someone who presents with the triad of impairments:
- a qualitative impairment in social communication,
- a qualitative impairment social interaction, and
- repetitive and stereotypic behaviour,
with evidence that this has been present from at least the age of three (i.e. is not a consequence of acquired brain injury during adult life) should be considered for assessment.
ADRC is not part of the NHS but, working in collaboration with Devon Partnership Trust, is a Qualified Provider for Wiltshire and Oxfordshire. GPs in Wiltshire can refer directly to ADRC. In Oxfordshire the service can be accessed through Autism Oxford.
In other areas where there is no contracted service, referrers need to be responsible for ensuring that funding is in place prior to a referral to ADRC being made. This would typically involve an application to a Clinical Commissioning Group. To make a referral please download a Referral Form.
We can provide a Core Assessment for straightforward cases and an Extended Assessment for more complex cases.