What do people think of autism services for children and young people?
There are around half a million people in England on the autism spectrum. Read our new briefing on what people have told local Healthwatch about their experiences of care and where improvements could be made.
In the last 30 years, there has been a 25-fold increase in autism diagnosis. This has led to increased public awareness of the issue, as well as continued calls for greater support for those with autism spectrum disorders and their families.
Since 2014, 33 local Healthwatch across the country have spoken to over 1,000 people to understand their experiences of using autism services and what improvements can be made.
We have reviewed what people told local Healthwatch and published a briefing on the common issues that families want to see improve when it comes to how young people are diagnosed and supported.
While local Healthwatch did hear about examples of caring and supportive services, they also heard about the impact that delays with diagnosis and not getting the right help at the right time can have.
Four common issues
1. Understanding and knowledge
- People said some GPs did not have a clear understanding of how the process of referring someone for diagnosis and treatment works.
- Parents often didn’t feel listened to when they told their doctors their child was experiencing problems.
- Some GP surgeries and schools found it difficult to spot the signs of autism consistently, suggesting the need for more awareness training.
2. Waiting times
- The time people had to wait for an appointment for a diagnosis assessment also varies. In one local Healthwatch area some people said they had been seen after ten weeks, while others reported having to wait more than three years. This means that some families were left without the right help as support is only available after a diagnosis has been made.
- People also often told local Healthwatch that the environment in waiting rooms for health and care services can be stressful and that more could be done to make them autism-friendly.
3. Support for parents
- Parents often felt that they are not being offered the right support and information from the beginning
- Families told local Healthwatch that they do not always know where to seek help in a crisis.
4. Communication and coordination
- Parents found that there could be limited communication between health and social care services.
- Some parents felt that appointments were not productive as they were often asked to repeat their child’s diagnosis or treatment.
- Families often said they needed clearer information about local support groups and social care services available to them, and how to help young people prepare for the transition to adult services.
Questions for commissioners
Although many of the issues people have shared can be addressed by services improving the knowledge of staff and the quality of care, our analysis of local Healthwatch reports also raises questions for those who commission services.
From what we have heard from people across England, there appears to be a lack of consistency in the way children and young people receive a diagnosis and support.
Some young people are referred to child and adolescent mental health services, whilst others go through neurological or learning disability services. Families have said that it is not uncommon for professionals to be unsure about which services are best placed to help.
Confusion over which service to refer young people to could risk families falling through the net and not getting any help, while long delays in getting a diagnosis means a long wait for support.
Many local Healthwatch have highlighted that these issues may exist because there is no single unified service available to cover autism in their area. And our briefing asks whether more commissioners should consider this to help improve people’s experiences of care.
Find out more
Read more about what people have told local Healthwatch about their experiences in our briefing.
Share your experience
If you or someone you love are autistic, and would like to share your experience, get in touch with your local Healthwatch.