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(UK) Nonverbal autistic 14yo waiting 3 years for ADHD assessment

June 6, 2024, BBC News: Parents' three-year 'nightmare' over son's ADHD assessment

A boy with attention deficit hyperactivity disorder (ADHD) is still waiting for an assessment for the condition three years after originally applying for one, his father has said.

Jack, 14, from Barnsley, who is non-verbal, was diagnosed with autism when he was 18 months old and as he got older he showed behaviour associated with ADHD.

His dad, Mark, said due to an administrative error, the family never received an assessment appointment and they were now at their "wits' end" after further delays.

Mark said: "We need an intervention and some medication. It's a nightmare."

After originally struggling in a mainstream school, Mark said Jack had moved to Greenacres Special School in Barnsley.

Jack was a "happy-go-lucky kid", Mark said, but as he got older he and mum Becky found his behaviour more difficult to manage.

"With all the changes he was going through and the extra testosterone, he became much stronger and things became really tricky," he said.

In December 2023, Mark and Becky noticed their son had developed self-stimulatory, or "stimming", behaviour including constantly tugging at his clothes which started to rip.

Mark said: “On a recent family holiday, he came back with an empty suitcase because he literally ripped every item in the wardrobe. We were replacing £300 worth of clothes every month."

Meanwhile, Mark added that Jack had also started destroying parts of the house and they had been "constantly writing cheques to replace damaged goods".

“He put his hand through the plasterboard in our bedroom. He caused £3,000 worth of damage to two sofas. He broke the front door handle," Mark said.

Mark said it was three years ago that the family had first applied for an ADHD assessment for Jack and they had received a referral through Child and Adolescent Mental Health Service Barnsley (CAMHS).

However, after months of waiting for an appointment, they were told they had been discharged because they had missed their appointment.

Mark said the family had never received a letter, nor any follow-ups, and they now believed the letter had been sent to the wrong address.

After again applying for an assessment early this year, Mark said he was told by CAMHS Barnsley that the waiting list for an assessment would be at least three months.

After that, Jack would start on a waiting programme for medication which could take a further year.

Mark and Becky were also told that before the process could begin, they would have to attend a training course to show they understood the complexities of autism and that was not due to start until October this year.

Mark said: “It’s insulting. We live and breath Jack’s autism every day."

As a result, Mark said he and Becky had decided to look for private clinics in a bid to speed up the process.

However, they were told Jack was not a “suitable candidate” as he also had a learning disability and because he was non-verbal and unable to read or write, so he could not complete the necessary questionnaires.

Mark said: “It feels like the demand for ADHD assessments is so high that private clinics are spoilt for choice and can be choosy who they accept. We were just too complex."

Mark said he and Becky were now at their “wits' end” and felt like they were back to “square one”.

'Phased approach'

In a statement, South West Yorkshire Partnership NHS Foundation Trust, which runs Barnsley CAMHS, said it "empathised" with the challenges faced by Jack and his family.

"The Barnsley CAMHS ADHD assessment pathway offers relatively short waiting times compared to the national average," a spokesperson said.

"The phased approach involves an early help assessment, school and parental questionnaires, input from the school's special education needs coordinator and we ask parents to participate in a parenting intervention programme.

"We offer our assurances that this phased approach supports important decisions on the best possible care pathways for young people and their families."

In the meantime, Mark said the long wait for an assessment and treatment was "not fair on us or Jack".

"We’ve been passed from pillar to post. He deserves a better quality of life," he added.


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