The below Parliamentary question was asked by Lord Maginnis of Drumglass on 2016-02-29.
To ask Her Majesty’s Government whether they maintain statistics relating to (1) autism referrals, (2) initial assessments of autism, and (3) diagnosis of autism; and if so, how many of each there were during each of the past five years.
Lord Prior of Brampton
No formal statistics are collected of autism referrals, initial assessments or diagnoses. The Department does however commission Public Health England each year to carry out a self-assessment exercise with local authority areas on progress they are making in implementing the Autism Strategy for Adults in England. Local authorities work with their local partners including clinical commissioning groups (CCGs) to informally answer a range of questions.
In the exercise based on 2013 data, all 152 local authority areas replied but some did not answer all the questions. Areas were asked how many adults have completed the diagnostic pathway in the preceding year and 111 reported a total of 4,677. They were also asked the length of the average wait for referral to diagnostic services and 117 answered this question. The average of these figures, weighted for the population in the responding areas, was 27.9 weeks.
The exercise based on 2014 data saw 149 areas respond. They were asked how many adults had received a diagnosis of an autistic spectrum condition in the preceding year and 128 reported a total of 5,109. Areas were also asked the length of the average wait between referral and assessment for all adults and 135 answered this question. The average of these figures, similarly weighted, was 19.6 weeks. Information on the waiting time between autism referrals and initial assessments, and between initial assessments and diagnosis, was not collected during these exercises. The next exercise will be launched later in the spring.
The number of children and young people diagnosed with autism by the National Health Service is not collected centrally. Latest figures from the School Census (2015) state that there were 90,775 pupils with an autistic spectrum condition at state funded schools and non-maintained special schools in England. This has increased from a total of 56,250 in 2010 who were recorded as having a primary need of autism, but it is not directly comparable to the 2015 figures because of a change in collection methodology.
New statutory guidance was issued in England in March 2015 to support implementation of the Adult Autism Strategy. This set out what people seeking an autism diagnosis can expect from local authorities and NHS bodies. The National Institute for Health and Care Excellence has published three clinical guidelines on autism and a quality standard to assist health managers and practitioners in developing services. This includes a recommendation that an assessment is started within three months of the referral. NHS England has commenced a programme to visit CCGs to identify and share good practice in accessing autism diagnosis, and look at possible barriers. NHS England will complete a report on this by the end of April 2016.