We had to fight for our son’s autism diagnosis… families across the UK are struggling but there’s an easy answer

WHEN little Joshua Riach had barely uttered a word by the age of three, mum Rachel reached out for help.

But it was almost three years before Joshua got a diagnosis for autism – leaving Rachel and husband James in limbo without professional help for their son.

Rachel says her mental health suffered while she was waiting for Joshua's diagnosis


Rachel says her mental health suffered while she was waiting for Joshua’s diagnosisCredit: supplied

Rachel, 40, said: “We were left adrift and I don’t mind admitting it really took its toll on my mental health.

“It was horrible being left in intellectual and emotional limbo with absolutely no intervention and no help with behaviour.”

Press officer Rachel and teacher James knew Joshua was struggling with his speech but were told the covid lockdown could have delayed his language.

The couple, of Leeds, were eventually relieved when Joshua was finally  put on the pathway for an autism diagnosis in March 2022 which he finally got in November last year.

Joshua is now a pupil in a special unit attached to a mainstream school but – like thousands of parents around the country – the family were left to cope alone until Joshua got his diagnosis.

But their story is not unusual.

A new report reveals that one in four kids 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 assessments has gone up 306 per cent since the covid pandemic – with 157,809  waiting for diagnosis as of September last year.

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Just one in ten kids receive an appointment within the recommended 13 weeks of being referred.

The report, led by the N8 Research Partnership of Northern universities and Longfield’s Centre for Young Lives describes how “parents are left to navigate a complex support system hampered by processing delays and waiting lists.”

The report authors are calling for a “needs led” approach to autism – instead of relying on a diagnosis.

Researchers warn that failure to provide the right autism support leads to poor outcome for children on the spectrum – including an increased risk of mental ill health and exclusion from school.

Kids wait up to three years for autism assessments as campaigners call for change , Frankie Stephenson (in swing basket)


Kids wait up to three years for autism assessments as campaigners call for change , Frankie Stephenson (in swing basket)Credit: Supplied
Big sister Ava-Mae is back on the waiting list


Big sister Ava-Mae is back on the waiting listCredit: supplied

Mum Siobhan Stephenson, 29 agrees wholeheartedly.

Her 10-year-old son Frankie is non-verbal and was diagnosed aged two-and-a-half after struggling with his speech.

She is now fighting to get her six-year-old daughter Ava-Mae a diagnosis.

Siobhan, of Durham, said: “We know that Ava-Mae is autistic because of the experience with Frankie.

“She was assessed recently but we were told she had missed out on having a formal diagnosis by one score because she masks her condition so well at school.

“We’ve now been put back on the pathway and been told she can’t be reassessed until 2026. 

“Frankie is in a SEND school but Ava-Mae is at a mainstream primary where she struggles socially and is about three years behind her peers.  

“Children should get help with or without a diagnosis.  It’s just ridiculous.”

Former Children’s Commissioner for England Anne Longfield called on education and health services to work together to help kids awaiting formal diagnosis.

She said: “The evidence shows the need to move to a system of support that responds to the needs of autistic children, rather than waiting for diagnosis before any help appears.

“Without urgent reform, we cannot hope to improve the life chances of the next generation.”

The Sun’s Give It Back campaign, with the Disabled Children’s Partnership (DCP), calls for the return of £573million of axed health and social care funding for Special Educational Needs kids.


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