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Children and young people with autism: Findings from the Healthwatch network

Around half a million people in England have an autistic spectrum condition. Early assessment, diagnosis and support can help people with autism and their families improve their quality of life. That’s why it’s vital that young people with autism and their families are able to access the support they need.

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.

The four most common issues that people have told local Healthwatch they want to see improve include:

1. Understanding and knowledge

• Some GP surgeries and schools found it difficult to spot the signs of autism consistently, suggesting the need for more awareness training. This would help improve the referral process for diagnosis.
• Parent carers felt that doctors did not listen to them when they said their child was experiencing problems.
• People said some GPs did not have a clear understanding of how the referral process works.

2. Waiting times

• Waiting times for young people to get an appointment for a diagnosis assessment could vary between 10 weeks and more than three years. This means they are often left without the right help, as support is only available after a diagnosis.
• Long waiting times could cover a significant proportion of a child’s school years and overlap the important transition from primary to secondary education.
• When people did get an appointment, the environment in waiting rooms for health and care services could be stressful. More work needs to be done to make waiting rooms autism-friendly.

3. Support for parent carers

• Parent carers felt they are not being offered the right support and information from the beginning.
• Families said they don’t know where to seek help in a crisis.

4. Communication and coordination

• Parent carers found that there was limited communication between health and social care services.

• Some parent carers felt that appointments were not productive as they were often asked to repeat their child’s patient history. This meant that there was less time spent discussing their child’s diagnosis or treatment.
• Families need 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.