How well do local health and care services support the needs of people with autism?

Healthwatch Islington explores how well local health and social care services meet the needs of people with autism and their families. It is based on feedback from 60 participants, including people with autism, carers, family members, and professionals, gathered through interviews, focus groups, and surveys in 2016. 

Overall, the report finds that many people feel services are not sufficiently accessible or responsive to the needs of autistic individuals. Participants reported that services often lack flexibility, with patients expected to adapt to systems that can be difficult to navigate due to sensory sensitivities, communication differences, and anxiety. Waiting areas and appointment systems were frequently described as unsuitable, although some examples of good practice were identified. 

A key issue highlighted is the lack of awareness and understanding of autism among health and care staff. Many respondents felt that professionals did not adequately understand communication needs or adjust their approach accordingly, which created barriers to care. While some staff demonstrated good practice, inconsistency across services was a recurring concern. 

The report also identifies gaps in autism-specific services and information. Participants said it was difficult to find clear, comprehensive information about available support, and that services were fragmented and poorly coordinated. There were particular concerns about limited provision for adults and for individuals with high-functioning autism, as well as the lack of crisis support services. 

Diagnosis processes were another major concern. Many respondents described long waiting times, unclear pathways, and stressful assessment experiences. Some reported needing multiple assessments or struggling to obtain referrals, and adults in particular found it difficult to access diagnosis without paying privately. There was also a lack of support during the waiting period. 

Participants suggested several improvements, including better preparation for appointments, more flexible and autism-friendly environments, and greater support for parents and carers. They also emphasised the importance of continuity of care and clearer information about services. 

The report concludes with recommendations for commissioners and providers. These include making reasonable adjustments across all services, improving autism training for staff, developing more integrated and coordinated care pathways, and creating a central source of information and support. It also suggests exploring specialist roles and autism-friendly GP practices to improve access and quality of care.