Autism Statistics, April 2021 to March 2022

From the March 2022 release the previous measures (ASD01-09) were retired and a new set of measures ASD11-24 were developed. These new measures have been designed following a review of the statistics with NHS England and NHS Improvement where data quality issues were identified. Specific data quality measures have also been produced to help providers identify where there might be issues with their data. The intention is to review these metrics for future publications and develop further as data quality improves.

These measures quantify the open, new, and closed referrals by month across a rolling 12-month period.  They also quantify the number of patients with an open referral, as well as looking at patients who have received a first contact appointment within 13 weeks of their referral and patients who have a recorded diagnosis.

The previous forward model methodology reported all activity back to the date of the referral and did not present current waiting list information.  The new measures have been designed to show the numbers of referrals and patients at different points in time. Additionally, information on contact appointments and diagnoses associated with those patients and referrals is included.  Further developments to these statistics will aim to include additional breakdowns of the number of patients with an open referral for suspected autism  as well activity associated with those.

This publication will continue to be published as a quarterly series.

Two metrics have been added and one metric has been amended in the June 2022 publication.  These changes have been implemented to allow for a new waiting time measure to be included:

• ASD16a - Number of patients with an open 'suspected autism' referral in the month that has been open for at least 13 weeks is a new metric.  This is a sub-set of ASD16 (Number of patients with an open ‘suspected autism’ referral in the month) where only patients with a referral that has been open for at least 13 weeks are included.

• ASD18 - Number of patients with an open 'suspected autism' referral in the month, that has been open for at least 13 weeks, receiving a first appointment within 13 weeks has been amended. This has been changed so that only patients where their referral has been open for at least 13 weeks, who have also received a first appointment within 13 weeks are included. 

• ASD19 - Proportion of patients with an open 'suspected autism' referral in the month, that has been open for at least 13 weeks, receiving a first appointment within 13 weeks is a new metric.  This is the new waiting time measure which is calculated from ASD16a and ASD18 (ASD18 divided by ASD16a).

Two data quality metrics have been removed to provide a shorter list of metrics that focus on the main issues with the quality of the data:

• ASD15 - Number of open 'suspected autism' referrals that do not appear in every month from first submission has been removed.  This metric was included to demonstrate that the data submitted to MHSDS has gaps in submission (not every referral that is open is submitted in every month). However, the data quality metric ASD14 - Number of open, 'suspected autism' referrals in the month that do not appear in any subsequent month whether discharged or not highlights the larger issue that referrals for suspected autism that stop being submitted are not recorded as closed in MHSDS.

• ASD22 - Number of ‘suspected autism’ referrals receiving an autism diagnosis in the month has been removed. Comparing this metric to ASD21 - Number of patients with a 'suspected autism' referral receiving an autism diagnosis in the month demonstrated that there was not a substantial number of patients with multiple referrals with an autism diagnosis recorded.

Please note that some demographic breakdowns don't sum back to the total. This is due to the demographic being linked to the most recent instance of an open referral. In some cases these open referrals are from different reporting periods and as such different demographics are reported.

The denominator for the measures is comprised of people with a new referral for suspected autism in a reporting period (in this case the reporting period is a month)

A referral record is in-scope for these statistics if:

1. The coded reason for referral is ’25’ (suspected autism)

This is irrespective of whether this referral ends in a diagnosis of autism. 

Step 1: Get all records with suspected autism (MHSDS Reason for referral = '25' - suspected autism) as the referral reason within the reporting period from tables MHS101 and MHS103

Step 2: Join these referral records to the master patient index (MHS001) to allow demographic information to be gained for each patient

Step 3: Link the combined referral and demographic records to the first attended care contact date recorded for each referral, ensuring that this contact is the earliest associated with each referral. Types of contact considered for this analysis are face to face or video consultation.

Step 4: Link the combined referral and demographic records to the diagnoses data.

Step 5: Construct measures based on the length of time elapsed (in days) between initial referral and care contact received, as follows:

ASD11 - Number of open "suspected autism" referrals in the month

Count of all unique referrals open at some point in each month between the reporting period start date and reporting period end date

ASD12 - Number of new "suspected autism" referrals in the month

Count of all unique referrals starting in each month between the reporting period start date and reporting period end date

ASD13 - Number of closed "suspected autism" referrals in the month

Count of all unique referrals discharged in each month between the reporting period start date and reporting period end date

ASD14 - Number of open, "suspected autism" referrals in the month that do not appear in any subsequent month whether discharged or not

Count of all unique referrals open at some point in each month that do not appear in a subsequent month, whether discharged or not, between the reporting period start date and reporting period end date

ASD16 - Number of patients with an open "suspected autism" referral in the month

Count of all unique patients with at least one referral open at some point in each month between the reporting period start date and reporting period end date

ASD16a - Number of patients with an open 'suspected autism' referral in the month that has been open for at least 13 weeks

Count of all unique patients with at least one referral that has been open for at least 13 weeks open at some point in each month between the reporting period start date and reporting period end date

ASD17 - Number of patients with more than one open "suspected autism" referral in the month

Count of all unique patients with at more than one referral open at some point in each month between the reporting period start date and reporting period end date

ASD18 - Number of patients with an open 'suspected autism' referral in the month, that has been open for at least 13 weeks, receiving a first appointment within 13 weeks

Count of all unique patients with at least one open referral from ASD16a for which the time elapsed between referral date and care contact date is equal to or less than 91 days (13 weeks)

ASD19 - Proportion of patients with an open 'suspected autism' referral in the month, that has been open for at least 13 weeks, receiving a first appointment within 13 weeks

Proportion of all unique patients with at least one open referral from ASD16a for which the time elapsed between referral date and care contact date is equal to or less than 91 days (13 weeks). This is calculated as ASD18 divided by ASD16a.

ASD20 - Number of patients which have an open "suspected autism" referral in the month receiving at least one care contact in the month

Count of all unique patients with at least one open referral from ASD16 for who have at least one care contact within the month

ASD21 - Number of patients with an open "suspected autism" referral receiving an autism diagnosis in the month

Count of all unique patients with at least one open referral from ASD16 who also have an autism diagnosis within the month

ASD23 - Number of patients with an open "suspected autism" referral receiving a Mental and Behavioural disorder diagnosis in the month that is not an autism diagnosis

Count of all unique open referrals from ASD11 who also have a non-autism F chapter ICD-10 diagnosis within the month

ASD24 - Number of patients with an open "suspected autism" referral receiving a non-Mental and Behavioural disorder diagnosis recorded in the month

Count of all unique open referrals from ASD11 who also have a non-autism and non-F chapter ICD-10 diagnosis within the month

ASD15 - Number of open referrals not flowing in every month from first submission by month within the reporting period

Count of all unique referrals open at some point in each month that have not been submitted in every month between referral submission and discharge, between the reporting period start date and reporting period end date

ASD22 - Number of suspected autism referral and an autism diagnosis by month within the reporting period.

Count of all unique open referrals from ASD11 who also have an autism diagnosis within the month