'My boy's autism was a difference, not a deficit'

Harris Macdonell took his own life after years of not fitting in led to mental health issues.

He was 19 when he died in August 2020, but he had been treated in adult psychiatric units where his autism was never properly diagnosed.

His mother, Jane, believes he would be alive today if the right help was available.

She is using Harris' favourite things - music and sport - to try to stop other teenagers from suffering the same pain.

Jane Macdonell, a paediatrician, said those were the two things that lit Harris up.

"Harris was a real individual, a real sparky young boy who really enjoyed life," she told BBC Radio Scotland's Drivetime programme.

"He grew up in a village school in the borders. He thrived, he was good fun, he loved sport played tennis football rugby.

"He had a good sense of humour, enjoyed meeting people. He was a wee bit quirky and liked things like card tricks. We just though he was doing splendid."

Harris was a keen sportsman - he loved rugby and eventually played in the Selkirk 'A' team. Jane said he loved the banter and wanted to fit into that scene.

He also played the accordion, in school and as part of several bands.

But at high school, things were different.

She added: "Some changes started to happen with him in terms of his spark, his joy in life, and I think he was beginning to struggle with the more complex social relationships teenagers start to have.

"He couldn't talk about that and he didn't. We know now he was masking his anxiety and possibly couldn't really express his difficulties very well.

"He started to become more and more disorganised in school and that was the main feature, but nobody ever suggested he could be autistic."

The family could see he was struggling but even as a doctor, Harris' mum found it hard to work out what to do and where to get extra help.

At the age of 16, Harris was acutely unwell. However, there were no beds in any young people's units anywhere in Scotland.

He was admitted to the local adult psychiatric inpatient unit.

Jane said this was totally inappropriate for him.

"This led to significant short and long term difficulties in his mental and physical health and his ability to engage with local services."

And then lockdown made the situation worse.

Jane said: "He was very isolated he couldn't play rugby and became withdrawn in his room, emotionally distressed and got sucked into a lot of the social media stuff which was not great for him."

The struggle to fit in became too much and Harris took his own life.

Jane believes that her son would still be alive if the systems had been in place and she wants a fatal accident inquiry into her son's death.

She also wants appropriate services put in place for teenagers and created a charity in her son's name to improve help for young people in the Scottish Borders.

The Harris Trust was born from a fundraising page set up after Harris' death.

Jane said: "We felt strongly that there was a lot to learn from that and a lot of things that needed to change."

The charity has developed webinars for schools and parents to raise awareness of neurodiversity and mental health.

The trust uses music and sport to provide young people with activities.

They have funded a music recording studio at Selkirk High School and are providing autism-friendly rugby play sessions for teenagers

But Jane acknowledges there is a long way to go.

"I think the first thing is education and within our school system and health system there is a lot more knowledge that needs to be out there about the type of young person that Harris was.

"There are autistic young people that may have a learning disability or disabilities that are more apparent, but for Harris, these things were hidden.

"I think there's a lot more knowledge out there about autistic girls, and how they mask and how they try to cope with their anxiety and how it plays out.

"But not so much about boys like Harris who can have just the same difficulties. There needs to be more knowledge about that, because young people like Harris with autism could have a high chance of having mental health problems."

She also said that there needed to be a reframing of the conversation around neurodiversity and autism as "a difference and not a deficit".

"We did not feel that we had the support to know how to deal with a young man who had spent many many years thinking that he wasn't fitting in. And we didn't know how to communicate with him.

"For us, a big change should be more investment into resources at the higher end of mental health in CAMHS and I mean specifically tertiary level inpatient facilities for young people.

"Young people should not be admitted to adult units they are totally inappropriate for them. And they can lead to both short and long term difficulties and that is what we experienced."

She believes if these things had been in place Harris could be alive today.For details of organisations which offer advice and support, visit bbc.co.uk/actionline or can call for free, at any time to hear recorded information on 0800 066 066.