Autism diagnosis in adulthood is validating, but finding support can be a whole new struggle

For those diagnosed later in life, many had waited years for an autism assessment on the NHS and some paid privately to be assessed sooner. 

Despite wanting support, nearly half did not receive any information, resources or referrals following their diagnosis. 

Why did we do this work?

The purpose of this research was to gather insights of Hertfordshire residents diagnosed with autism in adulthood, focusing on their experiences of support after diagnosis. We wanted to find out about:

• Key concerns regarding support
• Types of support autistic adults would like
• Barriers to accessing mental health support
• What changes about post-diagnostic support people would like health and care providers to implement.

In total, we heard from 134 autistic adults, their loved ones and carers who shared their experiences. 

Autism is a lifelong neurodevelopmental condition which affects how people communicate and experience the world. It is considered a spectrum condition; autistic people may share similar characteristics, but all have varying support needs. 

What happens next?

The suggestions below were provided by respondents and have been shared with Hertfordshire County Council and presented to the Mental Health and Neurodiversity Healthcare Partnership (a group of local authority, NHS and charity organisations collaborating on mental health services) to be considered when commissioning services for autistic adults. 

Prioritise timely and appropriate diagnosis and referrals by: 

• Ensuring adults who suspect they may be autistic are taken seriously and referred.

• Increasing awareness of the Right to Choose Pathway so people can access free assessments, reduce waiting times and avoid private costs. 

• Training professionals to recognise how autism may present differently in women and people from ethnically diverse backgrounds. 

Improve personalised post-diagnostic support by: 

• Supporting people based on their individual needs, strengths and challenges as outlined in their diagnostic report. 

• Offering a variety of support options to suit individual needs and preferences. 

Share clear information and signposting to support services by: 

• Creating a central directory of local and national support services for people at diagnosis (to be made available in multiple formats). 

• Increasing awareness of coaches and/or support workers who can help with administrative tasks such as applying for financial support, navigating complex services and signposting. 

• Providing a single point of contact for any questions or concerns following diagnosis.

• Ensuring carers, family members, and loved ones are given clear guidance on how to access support for themselves and the autistic person they care for. 

Improve access to mental health support by: 

• Training professionals in how autism presents across age, culture, and gender, and how that may affect individuals. 

• Reviewing and improving the mental health support available on the NHS to accommodate autistic adults. 

Join up services involved in the care and treatment of autistic adults by: 

• Sharing an autism diagnosis across the health and social care records system to ensure this is known to all who provide support. 

• Reviewing any medications and treatments to check whether they are still appropriate or effective following diagnosis.

Improve employment and financial support for autistic adults 

Many autistic adults are not in employment, or find difficulties accessing support at work. Another key theme that arose was the need to: 

• Make autistic adults aware of the reasonable adjustments they are entitled to under the Equality Act 2010. 

• Share information about Access to Work and supporting people to obtain a grant. 

• Share information about PIP (Personal Independence Payments), disability payments and benefits. 

• Flag neurodivergence on government records to ensure autistic adults are supported in navigating applications/completing forms.