Nearly half of parents are waiting 18 months or more for their child to receive a formal diagnosis of autism, with some families having to wait for over three years, according to new research.
In a survey of nearly 4,000 parents conducted by Ambitious about Autism, more than 70 per cent reported that, even after they got an official diagnosis, they did not receive adequate support for their child with autism. Many said they were left “completely alone”, without information about sources of support or follow up appointments.
From the time of initial referral for an autism assessment, 46 per cent of parents surveyed did not receive a formal diagnosis for more than 18 months. “Many parents say they feel isolated and helpless as they wait to find out if their child has autism”, says Jolanta Lasota, the charity’s Chief Executive.
One parent, Helen from Kent, waited two years for a diagnosis for her son Evan, who is now four. “I didn’t think I could go to the GP with concerns about my son’s development”, says Helen. “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.” Helen says receiving the diagnosis finally gave her the confidence to seek support in the community, and further her understanding of her son. Until then she worried it was “all in her head”.