Report highlights the need for improved support for people with autism
The report, based on feedback from 70 people gathered between January and March 2024, outlines key issues such as long waiting times, lack of information and communication, and insufficient support during and after the assessment and diagnosis process. It provides a series of recommendations to enhance autism services and improve the wellbeing of those affected.
Understanding the challenge
Healthwatch Wolverhampton has consistently received feedback from people facing extended delays for autism assessments, a lack of support and communication, and difficulties getting care and medication, all of which have a detrimental impact on their mental health.
NHS England statistics reveal that as of June 2023, over 143,000 people in England were waiting for an autism assessment, with 83% experiencing delays beyond the three-month guideline set by NICE for initial appointment. Recent studies by UCL and the National Autistic Society estimate that the number of people in the UK with autism may be much higher than the government’s 2021 figure of 700,000, estimating that in England alone there may be as many as 1.2 million autistic people (diagnosed and undiagnosed).
Healthwatch Wolverhampton’s report sheds light on the real-life experiences of people waiting for assessment and post diagnosis, identifying key issues and concerns and how these affect people’s mental health and wellbeing. The goal is to inform local decision-makers and advocate for improvements in autism services and support.
Key findings
Key themes identified include:
- Long waiting times: Many people wait significantly longer than the recommended time for autism assessments.
- Lack of communication: There is inadequate communication with people while they are on the assessment waiting list, leading to uncertainty and stress.
- Insufficient information: There is a lack of easily accessible information on autism and the diagnosis process, leaving people to conduct their own research.
- Limited support: Both before and after diagnosis, people are not provided with the support they need, including for mental health; some search for support themselves.
- Need for tailored adult support: Adults with autism expressed the need for peer support groups and services to help with employment and social opportunities.
- Impact of stigma: Stigma around autism continues to contribute to the challenges people experience in their lives.
Recommendations for change
In the report, we make several recommendations to help the NHS Black Country Integrated Care Board and the Wolverhampton Autism Board improve support for people with autism, including:
- Improved information and communication: Regular updates for people on assessment waiting lists and accessible information materials, including in various languages, to be available at community hubs and health care settings.
- Expanded support services: Increased funding and availability of mental health support and peer support groups for those awaiting or living with a diagnosis, and better promotion and signposting to these services.
- Employment assistance: A review by the Council of employment support for adults with autism.
- SEND support for parents: A review of access to Special Educational Needs and Disabilities (SEND) support for parents while they are waiting for and following their child’s autism diagnosis.
- Tackling stigma: Launch of a citywide autism awareness campaign and co-production of educational resources with people with autism; and design training to help employers and their staff better understand how to support people with autism in the workplace.
One response to the Healthwatch Wolverhampton survey, summarises the wide range of issues and support needs raised by people with autism:
"The main issues for autistic adults mirror those of people with disabilities in general. Namely, accessing education and training; finding suitable employment and succeeding within a workplace (employment figures for autistic people are shockingly low, also underemployment is equally a significant problem); finding somewhere to live (most autistic people don’t have financial independence and are therefore excluded from the housing market, often leaving them vulnerable to homelessness); loneliness and social exclusion (autistic people are far more likely to be isolated from the rest of society, spending much of their time alone and prone to developing depression and suicidal thoughts as a consequence). There’s also an issue with, and/or a lack of, widespread understanding within the medical community about the additional health needs, associated medical conditions and co-morbidities that autistic people experience."
Stacey Lewis, Healthwatch Wolverhampton Manager, announced the new report: "We are incredibly grateful to everyone who shared their personal experiences with us. You have helped shine a spotlight on gaps in communication, support, and awareness for people with autism in Wolverhampton. We hope this report will serve as a catalyst for change, supporting service providers to improve the autism diagnosis process and provide the necessary support to those who need it. Together, we can create a more inclusive community where people with autism feel understood, supported, and empowered to live well."
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