Autism Statistics, October 2022 to September 2023

The code used to create the outputs for this report is available on our NHS Digital GitHub webpage.

Click here to access the code

New Average waiting times measures

This December publication includes the following new measures which report on average waiting times. The new median waiting times metrics are:

o        ASD25 - Median waiting time in days for all referrals where the first care contact appointment was in the quarter*

o        ASD26 - Number of referrals where the first care contact appointment was in the quarter*

o        ASD25a - Median waiting time in days of patients aged 0 to 17 years where the first care contact appointment was in the quarter*

o        ASD26a - Number of referrals of patients aged 0 to 17 years where the first care contact appointment was in the quarter*

o        ASD25b - Median waiting time in days of patients aged 18 years and over where the first care contact appointment was in the quarter*

o        ASD26b - Number of referrals of patients aged 18 years and over where the first care contact appointment was in the quarter*

*quarter = three months up to and including the month stated (Eg April 2022 will include first contact appointments in Feb, Mar and Apr 2022).

These measures are in early stages of development but we are releasing this metrics in order to enable us to engage with people in their assurance, and they should not be used for any other purpose. 

An additional data file has been added to this publication as a data quality issue regarding data from Tees Esk and Wear Valleys NHS Foundation Trust significantly impacted figures at national level. The additional data file includes a comparison of national figures with and without the Tees Esk and Wear Valleys NHS Foundation Trust data. In addition to this, the following update was provided by Tees Esk and Wear Valleys NHS Foundation Trust:

In February 2023, the Trust implemented a new team structure as part of Community Transformation within Adult Mental Health Services. This involved the bulk closure of referrals in the old team structure and bulk opening of referrals as patients were transferred into their new team structure. Those patients who had a clinical contact within their referral for the old team have had a contact added to their new referral to ensure that those truly waiting are visible within the electronic patient record. Within the Trust we monitor waiting times through patient journey rather than referral-based to be patient centric. 

As a result of this service change and the MHSDS being referral based, there is a significant artificial increase in both referrals closed and referrals opened for the Trust. This has impacted on a variety of national metrics.

As such, any interpretation of the average waiting times figures should be done with this context in mind.

New Diagnosis data

We have also published some new diagnosis information from both CSDS and MHSDS. This shows the numbers of people in contact with services each year with an autism diagnosis recorded from the same list of autism diagnosis codes used within the publication. We have issued a separate CSV file for this data. This data shows counts of autism diagnosis recorded in both CSDS and MHSDS only. They do not show if they have a linked referral for suspected autism for each diagnosis, and as such differ from the diagnosis metrics we publish as part of the main Autism Waiting times Publication (e.g. ASD21). It is also possible that people will have a diagnosis recorded in each dataset and as such it is not possible to sum the two counts together to get a total number of autism diagnoses in the year from both datasets using this data.

New Referral rates measures - UPDATED

We have introduced new referral rates measures as part of this publication. These are presented within the data files on this page and are detailed below:

New measure of referral rates per 100,000 population at sub-ICB and ICB. These measures are:

• ASD16f, Number of patients with an open suspected autism referral in the month per 100,000 of the population
• ASD16g, Number of patients with an open suspected autism referral in the month that has been open for at least 13 weeks per 100,000 of the population

We have noticed that the data files containing measures ASD16f and ASD16g contained duplicate rows, so these files have been corrected and swapped over for revised files. The following measures below have also been added to the revised files and will be routinely published going forwards:

• ASD16h, Number of patients aged 0 to 17 with an open suspected autism referral in the month per 100,000 of the population
• ASD16i, Number of patients aged 0 to 17 with an open suspected autism referral in the month that has been open for at least 13 weeks per 100,000 of the population
• ASD16j, Number of patients aged 18 and over with an open suspected autism referral in the month per 100,000 of the population
• ASD16k, Number of patients aged 18 and over with an open suspected autism referral in the month that has been open for at least 13 weeks per 100,000 of the population

We will be updating the PBI dashboard with the new measures over the coming weeks so you can see a visual representation of the new information and measures we have published as part of this publication.

Autism assessments for children and adolescents happen in two types of NHS service, child and adolescent mental health (CAMH) services and community paediatric services which undertake neurodevelopmental assessment. Activity in CAMH services is reported alongside adult mental healthcare activity in the Mental Health Services Dataset (MHSDS) and is included in this report. Activity in community paediatric services is reported through the Community Services Dataset (CSDS). Currently autism assessments are not clearly identifiable in CSDS and so cannot be included at present.

We are exploring developments in the identification of this activity in the CSDS with the intention of including this activity in future reports.

From the September 2023 publication onwards, the methodology used for the specified measures below within the Autism Waiting Time Statistics will include the following change.

We have changed the way that a referral for ‘suspected autism’ is counted as open.  Previously, open and close dates in the latest submitted version of a referral were used to determine which months the referral is counted as open. Data submitted to MHSDS includes a row of data for each referral for each unique month that the referral is open. After consulting with providers and carrying out some exploratory analysis into how effective providers are at closing referrals in the system and looking into why referrals remain open for a long period of time, we have agreed to implement a change in the logic of how we calculate open referrals in the publication. The new methodology will only count the referrals as open in the months when a row of data has been submitted or flowed. This means we can be sure that the referrals that are flowed each month are definitely active and we can be confident that this number of open referrals provides a more accurate view of this.

For more information on the scope of the Methodological Change please follow this link.