Wiltshire Autism Strategy 2022 to 2027

Autistic children, young people and adults, as well as parents and carers, have given feedback on the current offer through a range of forums, both online and in-person. This section provides a snapshot of that feedback and includes direct quotes from people who contributed.

What people with autism spectrum conditions think of services

In November 2021, Wiltshire Service Users' Network (WSUN) and Healthwatch Wiltshire published the results of a survey of over 100 autistic adults and/or adult carers of autistic adults, children and young people. The report 'What people with autism spectrum conditions think of services'⁸, made a number of recommendations:

• introduce initiatives and training to improve awareness of autism among staff working in GP practices and hospitals
• consider offering people with autism a written summary of their appointment, treatment and follow-up
• establish a system of recording preferences and/or needs for face to face, phone or video appointments and consider how these preferences can be met as far as possible
• establish a system that flags a person's autism spectrum condition in their medical notes
• include the findings of this report in pathway reviews for support services in Wiltshire, with the aim of providing improved access to services for people with an autism spectrum condition
• consider how information about, and experience of, transition from child to adult services can be improved
• investigate a reduction in the volume of general information given at diagnosis and the provision of a more individually tailored pack
• work with people with autism spectrum conditions and their carers in taking forward the above recommendations

Quotes from autistic people who contributed to the report

Long waiting time on the phone makes me anxious, the music or/beeping is overwhelming. [Staff] don't have awareness that I am autistic

I don't always understand the language they use, or what information they want.

Believe us! If he says he's in pain but doesn't react to pain in a neurotypical way, just believe him.

What autistic adults want to see from the Autism Partnership Board

In December 2020, Wiltshire CIL asked autistic adults to identify what they felt should be the priorities for the Autism Partnership Board in the coming year. They recommended the following:

1. raising awareness about autism
2. improving support around practical and emotional life skills
3. supporting autistic people into employment
4. improving range of independent living options
5. creating more social opportunities for autistic people
6. creating channels of engagement that work for autistic people

Autistic people and their families and carers have told us they need a trained and skilled workforce, services that offer continuity and consistency of care and an efficient and accessible diagnostic service. They consistently highlight needs around housing, employment, meaningful day time opportunities, the aging carer population and more recently, the disconnection between children's and adults' services.

We also know that the COVID-19 pandemic has had, and continues to have, an impact on autistic people. The National Autistic Society's 'Left Stranded' report shows that in June/July 2020, compared to the general public, autistic people were:

• seven times more likely to be chronically lonely
• six times more likely to have low life satisfaction

Nine out of ten autistic people worried about their health during lockdown; one in five family members had to reduce work due to caring responsibilities; and seven in ten parents said their child had difficulty understanding or completing schoolwork and around half said their child's academic progress suffered⁹.

We have heard anecdotally that, perhaps due to the increased pressure caused by the pandemic, increasing numbers of autistic young people and adults are smoking cannabis and drinking alcohol; there is also some evidence of increasing incidence of domestic violence, with autistic people as both perpetrators and victims.

Autistic people have also clearly stated that the Autism Partnership Board is not working and does not enable people with lived experience to express their views and be heard. We are exploring new and better ways to ensure the voice of autistic people is truly at the centre of what we do, and that we heard the diverse voices of autistic people - from younger and older people, those whose lives are settled and those people living through a period of crisis, people diagnosed and not diagnosed, etc.

⁸ What people with autism spectrum conditions think of services (healthwatchwiltshire.co.uk) (opens new window)

⁹ Left stranded: our new report into the impact of coronavirus (autism.org.uk) (opens new window)