Autistic residents in Lewisham are facing significant health inequalities, according to a new report presented to the Health and Wellbeing Board. The Lewisham Joint Strategic Needs Assessment (JSNA) on Autism, informed by focus groups with autistic adults and parents of autistic children, highlights a range of challenges, including long waiting times for diagnosis, a lack of post-diagnostic support, and difficulties in accessing employment and mental health services.
The report, presented by Trish Duffy, Health Intelligence Manager, and colleagues from London South Bank University, revealed that autistic people experience poorer physical and mental health outcomes and a lower life expectancy compared to the general population. Key findings from the focus groups indicated a pervasive lack of individualized support after diagnosis, with many individuals and families feeling left to navigate complex systems on their own. The JSNA on Autism (5.1 Lewisham Joint Strategic Needs Assessment JSNA on Autism) highlights a lack of individualised support post diagnosis
as a common theme, with participants reporting a sense of being left to find out about autism and services for themselves following diagnosis, usually with help from other parents.
Specific recommendations include Assistance in completion of forms and applying for benefits.
Significant concerns were raised regarding the length of waiting times for autism assessments. For children, the average number of referrals accepted per month in the financial year 2023/24 was 31, with only 18 receiving a first appointment. The total number of children awaiting assessment increased from 323 in April 2023 to 504 in March 2024. Worryingly, the number of children waiting over 52 weeks rose from 99 in April 2023 to 147 in March 2024. For adults, across Lewisham, Croydon, and Lambeth, 1,866 people were waiting for an autism assessment in July 2024, with 472 of these being Lewisham residents. The report notes that long waiting times remain the experience of many,
despite steps taken to outsource provision for under 18s. A key measure of success for the strategy is to reduce the number of children and young people waiting over 52 weeks for an autism assessment by March 2026.
Difficulties with transitions from children's to adult services were also a significant concern, with many young adults falling into a gap in provision. The report stressed the need for clearer communication about assessment pathways and waiting times, as well as improved awareness and training for professionals across all public services, not just those in specialist SEND roles.
Mental health was identified as a critical area, with autistic individuals more likely to experience anxiety and depression. The report noted that some mental health services are only available to those with a confirmed diagnosis, which is problematic given the long waiting times for assessments. There is a call for more neuro-affirming mental health support that is accessible to all, regardless of diagnosis status. The JSNA findings highlight that Currently some mental health services specific to neurodivergent people are only offered to those with a confirmed diagnosis. Given the long waiting times for an autism assessment and diagnosis, coupled with high demand for mental health services, there is concern about needs not being met.
Furthermore, barriers to accessing mental health services include inaccessible services, treatment which is less effective for autistic people than non-autistic people, and services with insufficient capacity to meet demand.
Some autistic adults have also experienced negative encounters with services or found environments overwhelming, such as attending A&E.
Employment was another significant barrier, with autistic adults reporting experiences of exclusion, misunderstanding, and discrimination, often leading to burnout due to the need to mask their needs. Participants described experiences of being excluded, misunderstood, or discriminated against
and noted that Many had to mask their needs, leading to burnout.
Support within employment was found to be lacking, with some individuals leaving jobs because the environment was not autism-friendly. One individual's disability employment adviser having a lack of understanding of autism
was also highlighted. Recommendations include Support with employment needs to be joined up and easy to access
and training for employers to create autism inclusive workplaces.
The JSNA also highlighted issues with data recording, particularly concerning ethnicity and the recording of autism as a health condition within adult social care records, which is crucial for safeguarding. The report states that Improved system-wide record keeping, for example the issue highlighted within adult social care that autism needs to be recorded as a health condition to flag under safeguarding.
It was found that Of the 1,500 plus carers or adult social care users, no one was recorded as autistic which is statistically improbable.
Recent changes to recording systems in May 2024 mean that the YES
for autism is now live, but the full count requires information from both assessment forms and health condition records. The Equalities Analysis Assessment in 2023 revealed individuals with a diagnosis of autism not having it recorded as a health condition, which is a statutory requirement for safeguarding. Recommendations include Improved data recording • Special category data recording, with focus on ethnicity, as analysis showed notable levels of missing data, even for young children • Inclusion of autism/ neurodivergence within service user records and for those who support service users, i.e. unpaid carers.
Donna, the new co-chair of the Autism Partnership Board, welcomed the report, stating it accurately reflects the lived experiences of autistic people and their families in Lewisham. She emphasized that Lewisham has an opportunity to be a leader in practice by addressing these issues and called for greater employment opportunities for autistic individuals.
The report makes several recommendations, including improving data recording, enhancing awareness and training for professionals, creating clearer communication about assessment pathways, and considering neuro-affirmative mental health support for those awaiting diagnosis. The Board noted the contents of the report and agreed to receive a further report later in the year on the implementation of these recommendations. Training initiatives being considered include the Oliver McGowan Training for NHS staff, the PINS programme for primary schools, the Anna Freud National Autism Trainer Programme for Health and Justice settings, and the National Autistic Society SPELL framework for MHST. Feedback also highlighted the need for autism awareness training for teachers in mainstream schools and for staff in the council's Housing department.
The Board noted the contents of the report and agreed to receive a further report later in the year on the implementation of these recommendations. Public reports pack and Minutes of the Lewisham Health and Wellbeing Board were presented.
