A new survey by the charity Ambitious about Autism of nearly 4,000 parents found that around half of them (46 per cent) were having to wait 18 months or longer for their child to be formally diagnosed.
In some cases, parents reported waiting over three years.
Over 70 per cent said they weren’t offered adequate support for their child even after receiving a formal diagnosis, with parents reporting being left ‘completely alone’ without a follow-up appointment or signposts to sources of support like speech and language therapy.
The autism charity has also launched a new online toolkit to support parents of under-fives with autism, in response to its recent findings that thousands of parents of autistic children are facing ‘nightmare’ waits for diagnosis and support.
The free guide contains information, practical tips and checklists to help parents navigate their child’s autism journey in the early years.
Key topics include information on child development, strategies to help children, how to request an autism assessment and navigate the diagnosis process and information about the financial, educational and emotional support available for autistic children and their families.
Jolanta Lasota, chief executive of Ambitious about Autism, said, ‘Many parents say they feel isolated and helpless as they wait for to find out if their child has autism.
‘To make matters worse, our research tells us that even when families receive an autism diagnosis, they continue to struggle to access adequate help to understand and support their child’s needs and help them feel positive about the future.
‘Autistic children have so much potential but we know that the earlier they can benefit from the right support and interventions, the easier it is for them to thrive and achieve as they grow up.
‘We’ve created our new Right from the Start toolkit directly for parents to empower them with knowledge about how to support their children in their crucial early years.
‘Every child and family’s journey is different but we hope this free resource will reassure parents that they are not on their own; and give them more confidence to speak to professionals about their concerns to access the support they may need.’
Helen, from Kent, was involved in the development of the toolkit after spending two years waiting for a diagnosis for her four-year-old son, Evan.
She said, ‘I didn’t think I could go to the GP with concerns about my son's development. I lived this life day in day out, worrying he might have something like brain cancer, or wondering if I was just a bad mum, and not knowing how to help him.’
She added, ‘Having a resource that shows parents what to look out for and how they can raise their concerns is really important. It’s also important parents know where to look for support and what their rights are.’
- Ambitious about Autism’s online toolkit is available to download here