Support for autistic adults
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Healthwatch Hertfordshire wanted to understand the experience of autistic adults getting the support they needed after diagnosis. 134 autistic adults, their loved ones and carers shared their experiences of support after receiving an autism diagnosis. They made suggestions for how services could be improved and what type of support should be available.
Many people waited years for an autism assessment on the NHS, with some paying privately to be assessed sooner. These delays and costs often had a lasting impact on their finances and wellbeing.
Most wanted support but nearly half did not receive any information, resources, or referrals following their diagnosis. Many people felt like they were left to process a life-changing diagnosis alone and struggled navigate services or find support.
Those who accessed support often had positive experiences but faced challenges in finding or accessing services. Having a single point of contact and greater autism awareness among professionals was seen as key to improving support.
Poor mental health was common before and after diagnosis. Mental health support was the most sought-after type of support, but many found that services lacked the training or awareness needed to adequately support autistic adults.
Support pathways were often described as fragmented, inconsistent, or lacking coordination. This made it difficult for people to access the care they needed and left many feeling dismissed or forgotten.
Many felt current services were inflexible or not tailored their needs. More targeted support, with greater personalisation and flexibility that reflects autistic adults’ needs, challenges, and strengths would ensure they receive the most appropriate help.
Social groups and peer support were often praised as an invaluable source of support. Many called for greater awareness of these groups and organisations due to the lived experience and knowledge they offer.
Carers and loved ones were often responsible for coordinating support between different services. This led many to worry about how support would be managed in the future if they were unable to continue overseeing their loved one’s care.