Around half of parents are waiting at least a year and a half for their child to be formally diagnosed with autism, a charity has warned.
Ambitious about Autism said many mothers and fathers are left feeling “isolated and helpless” while they wait for a diagnosis.
Once a diagnosis is made, many families still struggle to get the right help for their child’s needs, it added.
A poll of almost 4,000 parents of children with autism, conducted by the charity, found that, among those who do have a formal diagnosis, 49% said they waited 18 months or longer from the point of referral to getting it.
A further one in five (19%) said it took between 12 and 17 months.
Around seven in 10 (70%) said they do not feel they were offered adequate support after diagnosis, such as further information about autism, support groups or therapies such as help with speech and language.
Jolanta Lasota, chief executive of Ambitious about Autism, said: “Many parents say they feel isolated and helpless as they wait 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.”
The charity has launched a new online toolkit to give parents information, tips and checklists to help them support their child.
According to Ambitious about Autism, around one in 100 children in the UK have autism, with four times as many boys as girls diagnosed.
– The online survey questioned 3,842 parents and carers of autistic children, aged 0-25, between September and November 2019.