Mum tells of family’s struggle to get help needed for autistic son

An Aberdeenshire mum says her family has been left “vulnerable” after a tortuous journey to help her autistic son.

Karen McNeill forked out thousands of pounds to get private help for her 10-yearold son Cameron.

Cameron was diagnosed autistic at the age of four. However, like many other autistic children, he has several other conditions.

Cameron displays signs of pathological demand avoidance (PDA), which is an extreme resistance to everyday demands and expectations. He also has ADHD, phobias, crippling anxiety and suspected Tourette syndrome.

However, one of the most challenging aspects of Cameron’s condition is a little-known eating disorder called avoidant restrictive food intake disorder (ARFID).

“Cameron contracted Covid in February and completely stopped eating for two weeks,” says Karen.

While Cameron’s struggles are clear to his family, it’s taken numerous meetings, a tribunal and an army of professionals to make any progress in helping him.

In January 2018, Karen enlisted the help of private consultant Dr Elizabeth Shea. Dr Shea diagnosed ARFID.

“To be honest, I’d have sold my soul for their input,” says Karen. “It turned out that everything we had been doing was wrong. Dr Shea helped us develop our basic understanding of the condition and introduced the notion of trust.

“If we lose his trust by trying to trick him or push too hard he can just stop eating. If anything is wrong, he blames food.”

Unfortunately, a diagnosis is just one step of the journey. The real difficulty is in getting the right support.

In October 2019, a review attended by an NHS psychiatrist acknowledged that many of the strategies suggested to help Cameron have already been tried by the family..

In August 2021, a letter from a gastroenterologist suggested treating

Cameron via a feeding tube – something Karen is keen to avoid.

Cameron’s medical needs are not unusual. According to Autism Speaks, GI conditions are eight times more common in autistic children, and 7 in 10 will have eating problems.

Other associated health conditions are epilepsy, ADHD, OCD and mental health problems including anxiety and depression.

In 2018, Karen took Aberdeenshire Council to a tribunal to get Cameron a place at Camphill School, a specialist education provider in Aberdeen.

“Camphill were as good as they could possibly be,” says Karen. “Those were the best two years of my life – and Cameron’s – but we’ve had to accept his needs have changed.”

Like many children, Cameron wasn’t able to return to school after lockdown. This means returning to his Coordinated Support Plan (CSP) to find other ways to support his learning.

Cameron’s CSP sets out the help Cameron needs, and commits the council and health board to providing it. CSPs are backed up in law, but like many other parents, Karen says it’s had limited effect.

Vincent Docherty, head of education for Aberdeenshire Council, says support is there: “Around 43% of our school population is recorded as receiving help with additional support needs, and that help is shaped around their unique needs.

“Funding around this remains consistent with previous years.”

Cameron McNeill and mum Karen.

Cameron McNeill.