Monday, 18 March 2013

Playing the numbers game with the JSNA

UPDATE: following some further number crunching on the adult population, a greater disparity between the Council's estimates and this site's is apparent.

According to the ONS 2011 Census, the total number of people usually resident in North Yorkshire is 598,376, meaning there will be a total of around 6000 people with autism, both diagnosed and undiagnosed (assuming 1% of the population are on the spectrum and that the prevalence is constant throughout the population).

North Yorkshire estimates there are approx 3500 adults (18-64)  and 837 children with autism (only including those children with a diagnosis - see below).  That gives a total of 4337.

We calculate 4660 adults and 1324 children (0-19) - that's 1663 more, or an additional 40%. The Council base their figures partly on PANSI, which we don't have access to, and their own data. It's a huge difference. If Council estimates are inaccurate it could well have a significant impact on resourcing for people with autism. If anyone has access to PANSI data please get in touch.


The Joint Strategic Needs Assessment (JSNA) is a document produced by the local authority, local NHS, voluntary groups and the wider community to map out a local picture of current and future health and wellbeing needs. It is used to target resources where there is need. Each local authority produces a JSNA. The first report in North Yorkshire was published in 2008, and following some small additions, the second report was published in 2012. It is now the responsibility of the Health and Wellbeing Board to produce future reports.

The reports include individual topic summaries, one of these being on autism. This summary was updated earlier this month. It says:
A national prevalence for autism of about one in 100 suggests that we could expect around 837 children and young people in the county to have a diagnosis of autism. In 2013 there were 370 children with Special Educational Needs (SEN) whose primary need was autism, equivalent to 20.5% of the statemented population. It was the most common primary need among statemented children. Of those children with a current statement, the statement had been in effect for an average of six years. In addition to those with a statement, in 2013 there were 189 children at SAP (School Action Plus) with a primary need of ASD,

1 The Council doesn't seem to have a firm idea about how many children are diagnosed with autism.

2 A more informative figure would be to estimate the number of children with autism. By highlighting diagnosed children only, the Council are ignoring the undiagnosed. Given that, in recent times, large numbers of parents have been waiting up to four years to get their children a diagnosis, there has been no diagnostic service at all for children over seven in large areas of the county and there are, we understand, long waiting lists whilst services catch up with the backlog, these are not insignificant numbers, nor are they necessarily children with insignificant needs.

Based on the 2011 Census (table KS102EW, available here) and a 1% prevalence rate, we estimate there are approx 1322 children (0-19) with autism living in North Yorkshire (1) which leaves approx 529 undiagnosed children (63% of the Council's figure.) We know it can be a struggle for children to receive services even with a diagnosis. It can be much harder without. This matters.

If the Council are undercounting numbers, or at least not taking into account the undiagnosed, one has to ask whether this group of children are having their needs met. The rationale of the JSNA is to highlight need. Resource decisions are made partly on the information within the JSNA. The Council is doing a disservice to children with autism and their families by not considering the entire population of children with autism in the summary report.

(1) Some of these children will have a different primary need as categorised by the Council - ie they may have an additional diagnosis which is considered to have more impact on education.