Agenda item

Mr Gary Collier, the Council’s Health and Social Care Integration Manager, advised that it had been some time since this issue had last been reported to committee. The report provided definitions about the prevalence of issues faced by those with autism as well as the development and achievements over the last three years. It was agreed that the draft Autism Strategy be brought to a future meeting to consult with the Committee.

Mr Graham Puckering, the Council’s Assistant Director – Sustained Support, advised that there had been a dramatic increase in the number of people with autism that did not have an associated learning disability. It was thought that this had partly resulted from the pandemic which had prompted people to consider whether autism could be a factor in difficulties faced in managing day to day activities. Improvements in diagnostics was also highlighted to the Committee. The report showed that, in 2019/20, there had been 18 autistic adults supported with a package of care by adult social care. In 2025/26, this had risen to 374. These figures did not reflect the number of referrals that were being made, nor the amount of short intervention work that was undertaken which prevented the provision of more significant support.

There had been a restructure in adult social care which had created an autism specialism within the team. Previously, people with an autism and an associated learning disability had been dealt with by the Learning Disability Team.

Ms Sonal Sisodia, the Council’s SEND Service Manager, noted that the Post 16 Team had been working with young people on their Education and Health Care Plans (EHCPs) to provide them with the skills to be able to look after themselves. Members queried whether the rise in autism only in adults had been reflected in children and young people. Ms Sisodia advised that 26% of those with EHCPs had autism and that this number had been rising over the last few years. Research had shown that the number of children and young people with autism had not increased but that the diagnoses had.

Members thanked the officers for the report and for providing case studies therein to illustrate the issues. They queried whether there was a breakdown available in relation to the level of support provided to the 374 autistic people in Hillingdon. Mr Puckering advised that, whilst all 374 had Care Act eligibility needs, their level of need was not broken down. There were people with autism in every sector of social care and an increasing number of people referring themselves (autism would have a profound effect on the lives of some of these people and not so much on others). Those with the highest needs would receive full time care and those with the lowest might receive two hours of support with things like reading their mail. The support that they were provided built up their skills and confidence. The cost of support could be up to £6k-7k per week per person.

Chart 1 in the report stated that there were 741 people with ‘autism only’ registered with a GP practice in Hillingdon. There did not seem to be a definitive way of counting the number of autistic people and concern was expressed that the number seemed to be growing. Mr Puckering noted that since the pandemic the numbers of people referred for an autism diagnosis had increased. The report showed the work being done to increase assessment capacity, but it was noted that the volume of referrals was high. The Committee was advised an autism diagnosis for an adult did not automatically mean that support would be provided by Adult Social Care. This was dependent on whether a person met the National Eligibility Criteria for Adult Social Care in the 2014 Care Act.

Members expressed concern that the report suggested that 1,468 young people who had had an initial assessment were still awaiting diagnosis. Mr Puckering advised that those were NHS figures and that they had reduced (the NHS had a pre-diagnosis service) and that you did not have to have an autism diagnosis to be able to access support from the Council. Mr Collier advised that funding had been provided for three voluntary sector organisations to provide support and that he would forward this information on to the Democratic, Civic and Ceremonial Manager for circulation to the Committee.

It was queried whether there was the prevalence of autism had been mapped across the Borough to be able to determine where support was most needed. Mr Collier advised that officers were currently in the process of mapping this information.

The national picture showed that autism was highest amongst men and BAME groups. Mr Collier advised that data was not available in relation to how that matched the Hillingdon picture as the mapping process did not cover gender or ethnicity (although this could be considered in the future). Mr Puckering informed the Committee that services were not currently being developed for specific groups. Members asked that this be something that be considered when developing future services. Mr Collier noted that this was a gap that would be considered as part of the development of the Autism Strategy.

Ms Taylor advised that culturally sensitive services were commissioned by the Council but that there was currently nothing available for autism only. Workers were embedded in social care to help provide support and needed to be tied into the Strategy – the Family Hub service provided a ‘waiting well’ service which could be used by those who had had an early autism diagnosis but who were waiting for a complete diagnosis. The PFA team had also been looking at services that needed to be commissioned. The average expected wait time for diagnosis was 18-24 months even when using the independent sector. Mr Collier advised that Central and North West London NHS Foundation Trust was responsible for this and that a company, Oxford Autism had commissioned to assist with child and adolescent assessments. They were also supporting with adult assessments. Members queried how quickly support was provided once an assessment had been undertaken. Mr Puckering noted that the diagnosis assessment was undertaken at the end of the process and individuals were then referred on to other services with packages of care being implemented as soon as possible thereafter, for people eligible to receive support from the Council.

Mr Puckering advised that all of the 374 individuals supported with autism only would be reported as part of the learning disability figures even though it was not the same. Twenty years ago, learning disabilities were treated differently. There would be some 18 year olds with autism that had significant health needs or someone with autism who didn’t start to experience challenges until they were in their 20s. Costs associated with support for people in middle age tended to be higher as people were living longer.

RESOLVED: That:

1.    the content of the report be noted;

2.    Mr Gary Collier provide information on the funding that had been made available to three voluntary sector organisation to provide support to the Democratic, Civic and Ceremonial Manager for circulation to the Committee; and

3.    officers consider gender and ethnicity when developing services and matching these with their location.