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Monday, 20 October 2014

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Dalton family tells of battle with Asperger’s

SINCE bereaved mum Amanda Morris hit out over the lack of services and support for people with autistic spectrum disorders, a number of parents have come forward to echo her concerns. Sara Walsh spoke to EMMA PRESTON about the daily battles her family faces

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MOTHER AND SON: Mitchel Walsh, eight, of Dalton, with mum Sara JON GRANGER REF: 50040383B001

AS I arrive at the home of Sara and Mitchel Walsh, I pass my colleague, an Evening Mail photographer, in the doorway.

As she shows him out, Mrs Walsh turns to her son and asks: “Did you say goodbye?”

It seems a fairly innocuous question but, as we chat later, the 40-year-old explains.

Eight-year-old Mitchel has Asperger Syndrome.

The autistic spectrum disorder affects different people in different ways, but a common factor is communicating differently with others.

Mrs Walsh spends a lot of time trying to help Mitchel learn to interact in line with social norms – things like saying hello and goodbye to people even if he doesn’t know them.

But the mum-of-three, of Union Street, Dalton, said: “At the end of the day, I’m a mum. I’m not trained to teach Mitch how to behave, I don’t know if I’m doing the right thing.”

Mrs Walsh said she and her husband have been left alone to help Mitchel with his condition for three years.

She said: “He got his diagnosis and that was it. They don’t give you any advice or information, nothing. Not even a leaflet. There could be someone we could maybe speak to, but we don’t know.”

Her words are sadly reminiscent of the views shared by Amanda Morris, whose son, Ashley Keenan, hanged himself in July.
Mrs Morris claimed that, on receiving her son’s diagnosis three years before his death, she had to learn about Asperger’s on the internet.

Dr Neela Shabde is clinical director for children and families for NHS Cumbria Clinical Commissioning Group. She said: “Historically across the country, support for families and individuals affected by autism has been lacking and
disparate, and sadly Cumbria also reflects this pattern.

“In order to try and help families affected by autism in Cumbria, our countywide Health Builders programme has been working on creating a clear pathway for children and families around the symptoms of autism, how to help children communicate and how a multi agency team can offer support.

“Health builders aims to focus health trusts, county council services and clinicians to see things from a family and patient perspective, and is working on creating a clear pathway for children with autism and their families.

“This pathway aims to lay out what parents and families should expect if their child is diagnosed with autism and how to access advice.”

Three years on from being at this stage in their ASD journey, Mrs Walsh said she and her family are having to work harder and harder to cope.

Those with Asperger’s often experience high levels of anxiety as a result of the different ways in which they understand the world around them, and she can see this taking its toll on her son.

She said: “Mitchel’s very high functioning, so he’s easy to look after – as long as everything fits in with his logic.

“As a household, we have a lot of routines – we have to adjust our whole lifestyle to suit him.

“He has a lot of OCD symptoms.

“He’s obsessed with the fact that we might have a fire – we have to go through a huge routine which gets longer every night and is now spreading through the day. I can see it getting out of control.”

Those with Asperger’s often experience high levels of anxiety, both because of how they perceive day-to-day situations but also out of awareness of their own differences.

Mitchel worries obsessively, his mum describing how his latest fear is whether he will ever marry.

She said: “I have to counsel my child every day, and I think, ‘Am I doing this right? Am I saying the right thing?’.

“And if this is what he’s like at eight, what’s he going to be like at 14, 19, 20?”

The issues faced by families living with ASDs are not solely healthcare-related, parents feeling more social support is needed both in and out of school.

Mitchel has a statement of educational needs, which means he gets 5.5 hours a week of specialist help in school.
But his mum wishes he could access one with an autistic unit, where children are kept in mainstream classes and given separate sessions addressing their conditions and social skills.

Whinfell School in Kendal is the nearest example.

Mrs Walsh said: “We’ve got nothing like that around here and I don’t suppose we ever will.”

Mitchel’s mum’s fear, that children in South Cumbria are short-changed by the social care system, is reflected in
information provided by the National Autistic Society.

Eleanor Thompson, NAS policy and participation officer for the North, said: “Furness does not have access to the North Cumbria Family Support Project which is available elsewhere in the county, nor a similar project which is about to be commissioned to cover Kendal.

“The NAS Furness branch does excellent work in the south of the county, running holiday and social clubs for children, but these rely on volunteers. The NAS has teamed up with the North Cumbria Autism Family Support Project at the request of families in Cumbria. We’re hoping this will give us the opportunity to further develop services for people with autism.”

A Cumbria County Council spokesman said: “The local authority reviews the type of provision across the county based on patterns of need.

“The most recent review has identified the need for additional resourced provision within the south of the county. Children and families have access to short break services. Family support is being made available in the Furness area.”

While Mrs Walsh is determined that health and social services need to change, the main thing she wants to do is raise awareness about Asperger’s.

Mitchel suffers taunts and bullying because children do not understand his differences, and she will often hear adults muttering about him if he has a “meltdown” in a public place.

She said: “Because he looks the same as everyone else on the outside, people don’t realise what’s really happening.

“We just want people to understand.”

• See tomorrow's Evening Mail to read the stories of people who have been affected by autistic spectrum issues in adulthood.

Have your say

There is a major lack of support for issues involving Childrens' Mental Health and it makes me so sad. One of my children has issues which at times trigger depression. It is heart breaking and I feel quite alone at times. I have ended up teaching a lot of people things to do with additional needs. Thank goodness for forums and websites or things would be really bad!

Posted by Rebecca Dixon on 16 January 2013 at 10:57

Re services in Kendal these are none existent for adults with HFA/ ASpergers Syndrome, apart from an adult social group once a month. I wish Sara would contact us and let us know where the masses of help is in Kendal. maybe she knows of things that we have missed.
Nor has family support or the health builders pathway been mentioned either for children or adults. If you don't qualify for Social Service input then there is nothing, even then, there is little access to experienced ASD aware support. We need access to preventative support i.e. confidence building skills, social skills, independent living skills etc which might stop our adult children going down the Mental health route due to lack of appropriate input.
Very frustrated parent of a wonderful
young man with Aspergers Syndrome

Posted by Beth Simpson on 22 November 2012 at 21:11

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