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Thursday, 23 October 2014

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Barrow mum hits out over lack of Asperger support

BEREAVED mum, Amanda Morris, has issued a rallying cry to parents to help her raise awareness about Asperger Syndrome. In the last of four articles looking at the issue, Anne and Tom Coward tell EMMA PRESTON their story of living with Asperger’s into adulthood.

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LIVING WITH ASPERGER’S: Thomas Coward, 20, with his mother Anne Coward at their home in Barrow HARRY ATKINSON REF: 50040548B002

ANNE Coward counts herself as “blessed”, she tells me, as we sit together in her Lumley Street living room.

The Barrow mum has three sons who she is absolutely devoted to, one of whom is sat with us as we speak.

Thomas has joined her today as she shares what is, for the main part, his story.

The 20-year-old is understandably apprehensive but listens calmly and quietly as his mum reluctantly describes his
difficult childhood.

Mr Coward has Asperger Syndrome – an autistic spectrum disorder which can have a wide range of effects, challenging everyone it touches differently. Common elements include difficulties in communicating and social interaction, high levels of anxiety and confusion over everyday situations.

For many children with Asperger’s this can manifest itself in anger, tantrums and violence.

Mrs Coward, 49, said: “We dealt with a lot when Thomas was younger. It was awful in the early days, really really awful, but I know now why that was.”

The way Mr Coward copes with his condition has changed entirely, and life is much calmer in the Coward household.

But, in many ways things have become harder.

Mrs Coward said: “When Thomas was younger, it was dealt with within the education authority.

“He was home-schooled and it was paid for, and there were services for children with autistic spectrum disorders. But when it came to his GCSE year, the funding stopped.

“And his teacher – who had become like a friend, someone to show him things and take him places – he went. I missed being able to have that for him, someone with a real awareness of ASDs. But there’s nothing – just a big black hole.”

Adulthood has brought other problems for Mr Coward, who started struggling with severe anxiety and depression when he was 18.

His mum said: “It set in quite badly and he was getting suicidal so I thought, the only thing I can do is go to a doctor.

“Thomas was started on anti-depressants because counselling wasn’t right for him.”

Mrs Coward points out her son could only get help when his Asperger’s led to medical problems. He has never been able to access support for the general effects of living with an ASD.

She said: “I’d like us to be able to go somewhere where the person had a real understanding of the condition, somewhere Thomas could feel like they wanted to help him. Maybe like we accessed this teacher, this mentor. Adults could do with that as well. Someone to give him the confidence to go out if I couldn’t go with him. Someone he’d be able to talk to, knowing they’d understand.”

Mrs Coward’s experiences of living with an adult with Asperger’s leave her wondering how parents who cannot keep their children at home cope.

Adults with ASDs can often, without the support they need, lose control of their lives.

Some “self-medicate”, leading to alcohol or drug addictions, to help themselves deal with common elements of ASDs such as not understanding their emotions.

Others find themselves homeless because day-to-day tasks like money-keeping pose too many problems.

It is a situation understood all too well by bereaved mum Amanda Morris.

She lost her son, Ashley Keenan, in July, when he hanged himself aged 18.

Mrs Morris said Ashley, who had left home, never received help from Cumbria County Council’s adult services.

Of the changeover between childhood and adult support, a council spokesman said: “Currently young people with any special educational need, including autistic spectrum conditions, have access to a transition worker and plan.

“Government proposals for a single Education, Health and Care Plan will be fully implemented by September 2014.”

Mrs Coward said she feels lucky she has never faced the scenario where her son had to leave home.

She said: “I think Thomas on his own would find it very hard mentally. At least here, he’s got us to talk to, and a life going on around him to try and bring him out of his shell. I like to keep Thomas’ life as calm and stress-free as possible, but I really do feel for families who can’t do it by themselves.

“Some (people with Asperger’s) do want to be independent, and it would be good for them if that support was there. Someone popping round a couple of times a day to check everything’s OK, helping with practical things like finances.”

Mrs Coward feels there are discrepancies in support that can be accessed in different parts of the country.

She points out some areas offer superior social and health services, for example, Mersey Care NHS Trust’s Liverpool Asperger Team.

She said: “I know Thomas wants to be able to do things, but it’s the crippling anxiety and the social phobia people don’t understand.

“Everybody accepts mental health problems, there’s teams and services for those with physical disabilities, but where’s the team for these people? Do they not exist? Why are these people just brushed under the carpet and not seen to be cared about?”

NHS Cumbria admits support for those affected by autism has been “lacking and disparate” across the country, including here.

It is creating a “pathway”, working with health trusts, county council services and clinicians to create a
support system easily accessible for those with ASDs and their families.

Asked about the transition between childhood and adulthood, Dr Neela Shabde, clinical director for children and families for NHS Cumbria Clinical Commissioning Group, said: “This remains a challenge and is something we are looking at as part of this work.”

Meanwhile, Mrs Coward remains determined her son’s future should be the best it possibly can.

She said: “I actually have come to the point now where I just think I’m going to get on with it. Thomas can have a life – because I’m going to do my best to do that for him myself.”

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