Autism Statistics Quarter 1 (April to June) 2019-20 to Quarter 4 (January to March) 2020-21

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 quarter)

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 telemedicine web camera.

Step 4: Construct measures based on the length of time elapsed (in days) between initial referral and care contact received, as follows:

ASD01 - Number of new referrals for suspected autism starting during the reporting period

Count of all unique referrals between the reporting period start date and reporting period end date

ASD02 - Number of new referrals for suspected autism starting in the reporting period having a first appointment recorded

Count of all unique referrals between the reporting period start date and reporting period end date where the care contact date is not null

ASD03 - Number of new referrals for suspected autism in the reporting period receiving a first appointment in 13 weeks or less

Count of all unique referrals from ASD01 for which the time elapsed between referral date and care contact date is equal to or less than 91 days (13 weeks)

ASD04 - Proportion of new referrals for suspected autism in the reporting period receiving a first appointment in 13 weeks or less

Proportion of the unique referrals from ASD01 for which the time elapsed between referral date and care contact date is less than or equal to 91 days (13 weeks), displayed as a percentage

ASD05 - Number of new referrals for suspected autism in the reporting period receiving a first appointment between 13 weeks and 26 weeks

Count of all unique referrals from ASD01 for which the time elapsed between referral date and care contact date is between 92 days and 182 days (13 weeks - 26 weeks)

ASD06 - Proportion of new referrals for suspected autism in the reporting period receiving a first appointment between 13 weeks and 26 weeks

Proportion of the unique referrals from ASD01 for which the time elapsed between referral date and care contact date is between 92 days and 182 days (13 weeks - 26 weeks), displayed as a percentage

ASD07 - Number of new referrals for suspected autism in the reporting period receiving a first appointment at more than 26 weeks

Count of all unique referrals from ASD01 for which the time elapsed between referral date and care contact date is more than or equal to 183 days (26 weeks)

ASD08 - Proportion of new referrals for suspected autism in the reporting period receiving a first appointment at more than 26 weeks

Proportion of the unique referrals from ASD01 for which the time elapsed between referral date and care contact date is more than or equal to 183 days (26 weeks), displayed as a percentage

ASD09 - Number of new referrals for suspected autism in the reporting period not having a first appointment recorded

Number of unique referrals from ASD01 for which the contact date is null

In the previous release of the forward model statistics the volumes of referrals are higher due to the way the referral cohort was put together.

The previous analysis was undertaken before migration of the Mental Health Services Dataset to the Data Access Environment, at which point only data up to 31 March 2019 was available.

For each quarter the analysis previously took all referrals with a referral date within the quarter, but the record could have been submitted on any date up to 31 March 2019.

This new version of the forward model is going to be published as a quarterly series in a rolling year model. This is a more robust method and will allow comparison of referral volumes between reporting periods. The changes to the methodology are as follows:

1. For each quarter, we now take all referrals for suspected autism that have a referral date within the quarter that have also been submitted within the quarter.
2. The waiting time measures are now calculated from only the group of patients who have a first care contact recorded. An additional column showing this denominator is now included in the published data for transparency. This has now changed and is detailed further down in the newest changes update section.

In the August 2020 release, the time elapsed between initial referral and first care contact was only broken down into less than or equal to 13 weeks, or greater than 13 weeks. Through development and collaboration with stakeholders we have taken the decision to remove the average (mean) waiting time from initial referral to first care contact and replace this with a more granular "time elapsed" breakdown, which is now presented as follows:

Number (and proportion) of new referrals for suspected autism in the reporting period receiving a first appointment in 13 weeks or less

Number (and proportion) of new referrals for suspected autism in the reporting period receiving a first appointment between 13 weeks and 26 weeks

Number (and proportion) of new referrals for suspected autism in the reporting period receiving a first appointment at more than 26 weeks

The average (mean) waiting time was removed from the forward model statistics because it was not comparable across quarters. This was due to the differing lengths of time elapsed for which the average waiting time could be measured.

The waiting time measures are now calculated from the whole group of referrals for suspected autism. In the August and September editions of this publication, they were calculated only from the group of referrals for which there was a care contact recorded. The additional column showing the number of referrals for which a care contact has been recorded is left in for reference.

In addition to the existing demographics and provider breakdowns, Clinical Commissioning Group (CCG) and Sustainability and Transformation Partnership (STP) breakdowns have now been added.

As these statistics are under continuous development, it is likely that changes will be implemented throughout this development. With the aim of transparency and development of high quality reliable statistics, all changes made to the methodology will be documented in full here.

The denominator for the additional measures calculated in the forward model is patients with a new referral for suspected autism in a reporting period (ASD01) and additional measures (ASD01a to ASD01j) are constructed for these referrals based on whether a diagnosis or a care contact date or a discharge date is recorded by the latest available submission at the time of publication.

There is now an additional metric added on to the existing referral to care contact group of metrics: number of referrals for suspected autism during the reporting period, presented as a rate per 100,000 Clinical Commissioning Group (CCG) population. This has been added to further examine the geographical reliability and consistency of data submissions from autism providers across England. As the metric is a new addition it should be interpreted with caution and in context along with the other metrics in the publication.

Please note that as this metric is per 100,000 CCG population it is only applied to the CCG geographical breakdown.

Step 1: For all referrals with suspected autism within the reporting period, link to primary or secondary diagnosis tables (tables MHS604 and MHS605, respectively) to get diagnosis details recorded.

Step 2: Group the referrals based on whether they have an autism diagnosis or other diagnosis recorded.

Step 3: For referrals without a diagnosis recorded check whether an attended care contact is recorded.

Step 4: For rest of the referrals with no diagnosis or care contact recorded link to master patient index (MHS001) to get discharge information recorded.

Step 5: Construct additional measures as follows:

ASD01a - Number of new referrals for suspected autism in the reporting period having an autism diagnosis recorded

Count of all unique referrals from ASD01 for which an autism diagnosis is recorded

ASD01b - Proportion of new referrals for suspected autism in the reporting period having an autism diagnosis recorded

Proportion of all unique referrals from ASD01 for which an autism diagnosis is recorded, displayed as a percentage

ASD01c - Number of new referrals for suspected autism in the reporting period having a diagnosis recorded but not for autism

Count of all unique referrals from ASD01 for which a diagnosis other than autism is recorded

ASD01d - Proportion of new referrals for suspected autism in the reporting period having a diagnosis recorded but not for autism

Proportion of all unique referrals from ASD01 for which a diagnosis other than autism is recorded, displayed as a percentage

ASD01e - Number of new referrals for suspected autism in the reporting period waiting for a diagnosis but had a care contact recorded

Count of all unique referrals from ASD01 do not have a diagnosis recorded but have a care contact recorded (care contact date is not null)

ASD01f - Proportion of new referrals for suspected autism in the reporting period waiting for a diagnosis but had a care contact recorded

Proportion of all unique referrals from ASD01 do not have a diagnosis recorded but have a care contact recorded (care contact date is not null), displayed as a percentage

ASD01g - Number of new referrals for suspected autism in the reporting period recorded as discharged from service without a diagnosis or care contact

Count of all unique referrals from ASD01 without a diagnosis or care contact recorded but have a discharge date populated

ASD01h - Proportion of new referrals for suspected autism in the reporting period recorded as discharged from service without a diagnosis or care contact

Proportion of all unique referrals from ASD01 without a diagnosis or care contact recorded but have a discharge date populated, displayed as a percentage

ASD01i - Number of new referrals for suspected autism in the reporting period still waiting for a diagnosis or care contact

Count of all unique referrals from ASD01 without a diagnosis or care contact and have discharge date as null or discharge date after the cut-off end date (based on the latest available submission at the time of publication)

ASD01j - Proportion of new referrals for suspected autism in the reporting period still waiting for a diagnosis or care contact

Proportion of all unique referrals from ASD01 without a diagnosis or care contact and have a discharge date as null or discharge date after the cut-off end date (based on the latest available submission at the time of publication), displayed as a percentage

ASD01k - Number of new referrals for suspected autism in the reporting period as rate per 100,000 population (CCG)

Count of all referrals from ASD01 / CCG population * 100,000