Agenda item

For the Sub-Committee to consider an early draft of Croydon’s Autism Strategy 2021-24, with a view to providing feedback that can be taken into account during the preparation of the final version.

The Sub-Committee was asked to review a draft of the Council’s forthcoming Autism Strategy, with a view to making suggestions that could be incorporated into the final version, due to be considered by the Cabinet later in the year. Members of the Children & Young People Sub-Committee had also been invited to participate in the meeting for this item, given the all-age approach of the strategy.

The Council’s Autism Champion, Councillor Jerry Fitzpatrick, introduced the report to the Sub-Committee, during which it was noted that due to the current circumstances created by the pandemic, there was concern within the autistic community in the borough about their ability to access health and care plans. There was also a concern about the financial challenges facing the Council and whether this would result in care packages being cut or current care receivers no longer meeting the threshold for support.

There was a national issue on the collection of data around autism which meant it was difficult to get a true picture of the number of people who were autistic, as adults would not be registered as autistic unless they qualified for care.

The Autism Strategy was an important step forward for the Council as it was essential that responsibility was taken at the centre of organisation. The Council needed to be able to allocate resources as it was able to do so to support the community, but it was recognised that it was unlikely there would be significant resources available at the present time given the Council’s financial challenges.

A number of external participants had been invited to participate in the meeting of the Sub-Committee to share their experience of autism support in the borough. The first person to address the meeting was Nicky Selwyn, who was Co-Chair of the Autism Partnership Board. The Sub-Committee was advised that the strategy was long overdue and had involved over 500 people inputting into its creation. There was good level of engagement in the work of the Board from the partners and representation from the autistic community. The strategy had been developed with the autistic community and was reflective of their needs and priorities. Once the strategy was agreed there would be a SMART action plan to underpin its delivery, allowing progress to be tracked.

The second speaker was Glenice Lake, who spoke to the Sub-Committee about the challenges she had faced as the mother of two autistic children in Croydon. This included examples of traumatic experiences involving the use of restraint, which had been caused by a lack of understanding of how best to support someone with autism. It was hoped the strategy would help to address some of these issues and ensure that a wider level of support was available for the autistic community.

The third speaker was Ema Jones, who advised that she had been diagnosed as autistic at 30.  In particular it was highlighted that the reason why not as many women as men were diagnosed as autistic was due to testing being geared towards men. This lack of diagnosis had led to challenges and it was hoped that the strategy would help to ensure others did not suffer a similar experience. It was envisioned that the strategy would continue to evolve as progress was made.

The Council’s Autism Inclusion Lead, Kevin Oakhill also gave a presentation to the meeting. A copy of the presentation can be found on the Council’s website at the following link – https://democracy.croydon.gov.uk/documents/s28256/Autism%20Strategy%20-%20Presentation.pdf

Daniel Turner, the Clinical Lead for Developmental Disorders at the South London & Maudsley NHS Foundation Trust (SLaM), gave his thanks to the Autism Partnership Board for driving forward the development of the Strategy. SLaM were keen as partners to use learning that arose as a result of the Strategy and supported its implementation.

The Cabinet Member for Families, Health & Social Care, Councillor Janet Campbell, congratulated the team for their work in preparing the strategy. Given the negative experiences highlighted by three speakers, it was questioned whether there was training that could be used by the Council and its partners to understand how best to identify and support those with autism. It was advised that there was effective training, such as positive behaviour support, but it needed to be put in place by experts who knew what they were doing and it would take time to implement. Early intervention and support were seen as being key to helping those with autism.

It was also questioned whether it was possible for parents of children with autism to experience similar traumatic events, such as the use of restraint on their children or whether services such as education had learnt form best practice. It was confirmed that Croydon University Hospital was wholly supportive of the approach outlined in the strategy and had been in conversation around things such as taking a blood sample from someone who may be distressed.

It was agreed there was an opportunity to learn from past experience to make positive change and it was as much about helping parents to understand as their children. It was important that proper training was provided to practitioners on how best to manage their interaction with and support to someone with autism. It was confirmed that all teachers and social workers needed to be trained in autism awareness. There was an aim to expand this to early years education to ensure there was a greater understanding of the issues involved.

The Sub-Committee agreed that the issues around data collection on autism were a concern, as without this being improved there would never be a full picture of the number of people with autism in the borough. However, it was acknowledged that this was a national issue that would be difficult to resolve in Croydon alone.

It was confirmed that there had been work on the assessment system for children and adults which had led to improvement and the system continued to be refined. It was advised that there was an issue nationally with a high level of demand for diagnosis and Croydon had recently invested in its own diagnosis service. It was highlighted that diagnosis was only the first step and there was still a huge amount of work required for onward services, post diagnosis.

The recommendation that there needed to be quantifiable goals for the strategy was accepted, with it advised that there was a determination to have SMART targets in place which were owned, so people knew what was expected of them. A working party had been set up to assist with this. It was highlighted that if the Council was looking to be a community leader for the autistic, the success of some targets, such as encouraging employers to support autistic people to work, would be difficult to quantify.

It was suggested that the Autism Partnership Board should work with Healthwatch Croydon, as they had specific powers regarding representing communities to engage with health services that may be of benefit in delivering the strategy, particularly for services provided through the hospital and GPs.

It was suggested that recognition could be given to businesses that supported their autistic employees and raised awareness of the support needed amongst their managers. It was confirmed that thought had been given to having autism champions in organisations, who would raise awareness and understanding. Consideration was also being given to creating a pledge employers could take to raise awareness of autism.

As it was noted the voluntary sector had not been listed as a partner, it was questioned whether they could have a role to play.  It was advised that the Board did want to engage with the voluntary sector, but it was aware that resource in this sector was stretched. Croydon Voluntary Action was involved in the localities programme and it was possible they would be able to feed into the delivery of the strategy from that perspective. It was highlighted that the majority of autistic people wanted to work rather than volunteer.

In response to a question about the use of social prescribing, it was advised there was a limit to what could be prescribed and an absence of the relevant provision. There was a lot of work needed to document and understand what support was required, before moving on to the spectrum of support that could be offered.

In light of the comments previously made about the difficult of women getting a diagnosis, it was confirmed that the strategy did look to address the needs of women with autism. It was often the case that women were better at masking their autism, which could lead to them being considered difficult at times when they were not coping.

At the close of this item, Councillor Jerry Fitzpatrick thanked the Sub-Committee for the useful discussion and its support for the strategy. It was highlighted that many autistic people led positive lives most of the time, but there was a huge amount of waste. For many children it was a good time, but there were challenges in mainstream schools as a result of the variance in training and expertise. There was a small amount of money available for training opportunities in 2021-22 and it had been confirmed the Council’s Autism Lead, who had been instrumental in driving the strategy forward, was being retained for the year. Finally, thanks was given to everybody who had helped create the strategy.

In closing this item the Chair thanked the attendees for the insight they had given to the Sub-Committee and commended the amount of work that had been invested in creating the Autism Strategy

Conclusions

At the culmination of this item, the Sub-Committee reached the following conclusions:-

1.    The Sub-Committee welcomed the broad commitment from both the Council and its partners to the Autism Partnership Board and the creation of the Autism Strategy.

2.    To ensure that the Autism Strategy is being implemented, it would be useful to bring an update on progress made to a future meeting of the Sub-Committee. 

3.    There was a need to improve data collection around autism and the Autism Partnership Board was encouraged to continue raising awareness of this issue.

4.    The Autism Partnership Board should consider engaging with Healthwatch Croydon on its scheme to raise awareness of autism with local GPs.