We had to fight for our son's autism diagnosis…families are really struggling
WHEN little Joshua Riach had barely spoken a word at the age of three, mother Rachel called for help.
But it took almost three years for Joshua to be diagnosed with autism, leaving Rachel and husband James in limbo with no professional help for their son.
Rachel, 40, said: “We were left adrift and I don't mind admitting it really took its toll on my mental health.
“It was devastating to find myself in an intellectual and emotional no man's land, without any intervention and without behavioral help.”
Press officer Rachel and teacher James knew Joshua was struggling with his speech, but were told the Covid lockdown could have slowed down his language.
The Leeds couple were ultimately relieved when Joshua was finally put on the path to an autism diagnosis in March 2022, which he eventually received in November last year.
Joshua is now a student in a special unit attached to a mainstream school, but like thousands of parents across the country, the family had to go it alone until Joshua received his diagnosis.
But their story is not unusual.
A new report shows that one in four children are waiting more than three years for support.
The study, published by the Child of the North initiative, says there is a “crisis” in autism assessment.
The number of children waiting for a diagnosis has increased by 306 per cent since the Covid pandemic – with 157,809 waiting for a diagnosis in September last year.
Only one in ten children receive an appointment within the recommended thirteen weeks after referral.
The report, led by the Northern Universities' N8 Research Partnership and Longfield's Center for Young Lives, describes how “parents must navigate a complex support system hampered by processing delays and waiting lists.”
The report's authors call for a 'needs-based' approach to autism – rather than relying on a diagnosis.
Researchers warn that failing to provide the right support for autism leads to poor outcomes for children on the spectrum – including an increased risk of mental health problems and exclusion from school.
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Mum Siobhan Stephenson, 29, wholeheartedly agrees.
Her ten-year-old son Frankie is non-verbal and was diagnosed at the age of two and a half after struggling with his speech.
She is now fighting to get a diagnosis for her six-year-old daughter Ava-Mae.
Siobhan, from Durham, said: “We know Ava-Mae is autistic because of her experience with Frankie.
“She was recently assessed but we were told she had missed a formal diagnosis by one score because she masked her condition so well at school.
“We have now been put back on track and told she cannot be reassessed until 2026.
“Frankie attends a SEND school, but Ava-Mae attends a mainstream primary school, where she struggles socially and is about three years behind her peers.
“Children must get help, with or without a diagnosis. It's just ridiculous.”
Anne Longfield, former children's commissioner for England, called on education and health services to work together to help children awaiting a formal diagnosis.
She said: “The evidence shows the need to move to a support system that responds to the needs of autistic children, rather than waiting for a diagnosis before help appears.
“Without urgent reforms we cannot hope to improve the life chances of the next generation.”
The Sun's Give It Back campaign, together with the Disabled Children's Partnership (DCP), is calling for the return of £573 million of scrapped health and social care funding for children with special educational needs.