New figures from Public Health England (PHE) give us a glimpse of the state of support and services for autistic adults in England, suggesting that the autism diagnosis crisis is deepening.

Below we look at what these figures mean and how to improve things. We’ve also passed the report onto Community Care who’ve done their own in-depth analysis, which you can read here.

Adult services in England.

The figures are drawn from a new report from Public Health England (PHE), which looks at how well the adult autism strategy is being put into action across England. This is based on a survey called the ‘autism self-assessment exercise’ which was sent to councils between July and November 2016. This covers how councils are doing in a number of areas, including:

  • planning the right services
  • staff training
  • diagnosis
  • care and support.

The report is very detailed but we’ve done some analysis and picked out some of the key issues:

  1. Diagnosis. The report suggests that since the last self-assessment exercise, waiting times between a referral and an assessment have increased significantly. It shows that the average waiting time to be seen is now 16 weeks, while in 2014 it was 13 weeks. While the longest average wait in an area in 2014 was 95 weeks, in this report it is 125 weeks. The report also includes some commentary. Some areas said that they had invested more money in their pathways, others said that increased demand meant they needed more investment. The report notes “The difference between the areas who had received more funds and those who stated they needed more money was reflected in the RAG ratings.”
  2. Training. Fewer councils (48%) responding said that they had training plans for all health and care staff. Training for these staff is a key part of the autism strategy and statutory guidance. The exercise also showed that many councils still have teams carrying out social care assessments where fewer than half of their assessors have received specialist training. This is concerning as assessors need a good understanding of autism to identify a person's needs and what support they will benefit from.
  3. Planning services locally. The overwhelming majority (93%) of local areas have autism leads. This is a requirement of the statutory guidance, and so all areas should have one. Most areas (82%) collect data on the number of autistic people in their area. This is vital to plan local services properly.
  4. Care and support. In the past, many autistic people without a learning disability have told us that they have not been able to get social care support. This remains a problem. But, 80% of local authorities now say that they have a pathway for autistic people with no learning disability to have a social care assessment. Nine out of 10 (91%) of areas also said that there is some support available for autistic people who are not eligible for social care support.

Mark Lever, Chief Executive of the National Autistic Society, said: “These figures give us a glimpse of the autism diagnosis crisis in England, suggesting that adults are on average waiting almost 25% longer for a first appointment than they were when the last assessment was carried out two years ago.

“There’s a striking variation between different areas across the country, with the longest average wait being 125 weeks. The average wait across all local areas is 16 weeks, which exceeds the three months recommended by NICE.

"Autistic adults and their families frequently tell us how life changing a diagnosis can be. It can explain years of feeling different and help unlock crucial advice and support, which can make a huge difference to an individual’s prospects. But these figures suggest that getting this support is a huge problem too. A diagnosis should trigger a social care assessment but this appears to be happening in just 45% of local areas, down from 54% in 2014.

Autistic adults and their families frequently tell us how life changing a diagnosis can be. It can explain years of feeling different and help unlock crucial advice and support, which can make a huge difference to an individual’s prospects.

Mark Lever, Chief Executive of The National Autistic Society

"The National Autistic Society and thousands of autistic people and families have been drawing attention to the diagnosis crisis for many years, calling for waiting times for children and adults in every local area to be regularly collected and monitored by the NHS in England - rather than relying on self-reported surveys every couple of years - and for the Government to fund services appropriately. 

"The good news is that the NHS has listened and is currently developing a way to measure waiting times routinely, but this needs to happen as soon as possible and then be used to actively monitor progress. This will mean that each area can be held to account in real time and action can be taken to support them when waiting times are increasing, for instance by Government investment. The evidence backs up this approach, with Public Health England's report itself showing that those areas that invested in their diagnostic pathways also saw a decrease in their waiting times.

"Being autistic can be challenging at times but we've seen again and again the difference that diagnosis, understanding and support can make."