The reality of autism for young people and their families in Kent

In 2016 Healthwatch Kent released a report on the Children & Adolescent Mental Health Services (CAMHS) service in Kent. Many families and carers told them about the particular difficulties and complications they experienced when trying to get an assessment for a clinical diagnosis or for mental health support for a child who already has a diagnosis of ASD. As part of their recommendations, Healthwatch Kent agreed to undertake a piece of work to explore some of these issues in more detail.

In December 2018 Healthwatch Kent set out to understand the challenges that people on the spectrum and their carers face, and to understand what will be most helpful or needed when someone first becomes aware that they or their family member is on the spectrum, when they are diagnosed and when they have a crisis. They engaged with a total of 134 people through a combination of online surveys, postal surveys, face-to-face engagement interviews, and education professionals. 

They found parents felt high functioning autism wasn't addressed by schools well enough. Social problems were being ignored by schools and staff- parents told Healthwatch their child had problems maintaining friendships with their classmates. There was much confusion with the referral process and parents were unsure who to speak to regarding a referral. When referrals are made, there is no response from the provider to acknowledge receipt of the paperwork. Families are therefore left without any contact details or any understanding of the waiting times. Parents are not signposted to local support groups or local activities to nurture their autistic child.