This week is World Autism Awareness Week. Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them. According to the National Autistic Society, at least 1 in 100 people are on the autism spectrum. The Society describes autism like this: ‘Autistic people have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice. Many have a very literal understanding of language, and think people always mean exactly what they say’.
Kilwinning mum, Gemma Stewart has a 12-year-old son with the condition. Gemma was named North Ayrshire Citizen of the Year at last month’s Provost’s Civic Pride Awards in recognition of her work with autistic children and with North Ayrshire Foodbanks. I caught up with her at the food bank in Ardrossan to ask her how she balances the demands of a full-time job with her work in the community, and the challenges of bringing up an autistic child.
Every parent will remember their child’s first day at school. We all feel anxious about handing over responsibility for their well-being to another person regardless of how qualified they may be. For the parent of an autistic child there is an additional level of anxiety due to the lack of autism awareness among the general public and — in Gemma’s opinion — within public services.
Before Ben started school, arrangements were put in place with North Ayrshire Council’s Educational Psychology Services and his teachers to provide one-to-one support for him during school hours. However, it soon became clear to Gemma that these arrangements were not being adequately delivered and she was forced to take the difficult decision to remove Ben from the school.
This meant giving up her career in hotel management and finding other work with more flexible hours that would allow her to home-school her son until an ‘autism friendly’ school could be found. Fortunately, Ben wasn’t out of the education system for too long as the council was able to place him in another primary school where the special needs of autistic children were better understood.
“The education system has been a massive nightmare,” says Gemma. “But despite the setbacks, Ben has made good progress in his new school and he now looks set to go forward to secondary education.”
While the challenges Gemma and Ben have faced over the years have not gone away, there has been some improvement in how the support funding for people with special needs is delivered.
In April 2014 the Scottish Government passed The Social Care (Self-directed Support) Act which places a duty on local authority social work departments to offer people who are eligible for social care a range of choices over how they receive their social care and support. It allows people with special needs, their carers and their families to make informed choices on what their support looks like and how it is delivered. It gives them as much ongoing control as they want over their individual budget.
For Gemma, this means that she can now manage Ben’s personal support budget herself and use it to obtain the type of care she feels is most appropriate for him. Gemma said: “Having control over Ben’s support arrangements means that I can plan where Ben goes with his support workers to obtain socialisation opportunities, for example. It also means that I have more say in who provides that additional support and I’m pleased with the people who now work with him. In fact, I now see Ben’s support workers as part of the family.”
But the education system is just one part of any child’s development—children also need social activities to help them develop as individuals. Gemma found that there were virtually no activity centres that could properly cater for the needs of autistic children. She said: “Autistic kids struggle when it comes to joining in. I felt that local kids’ groups had virtually no understanding of autism and so were unable to engage with the children and encourage them to become involved. So, four years ago I decided to form a parent-led support group for the autistic kids in my area.
“It’s called Get Set Go and we meet on Tuesday nights at Whitlees Community Centre in Ardrossan. We provide a range of activities and the kids pay £1 to attend which helps cover the cost of hiring the venue. Anything else we need to pay for is raised through fundraising events.
“Some other source of funding would obviously be a great help, but just having enough experienced volunteers to lend a hand would make an enormous difference to how much we can do for the kids. I did have someone helping out until recently but she’s got other commitments now, so at the moment I’m running it by myself.”
Gemma explains that the project is as much about raising autism awareness in the community as it is about providing engaging activities for the kids. By way of an example she describes how one of the kids who attends the club recently had a bad experience on a bus when he witnessed a fight break out. The boy was traumatised by the incident and became fearful of travelling on public transport.
She said: “When the boy’s parents told me what had happened, I contacted the bus operator to explain the situation and asked if they would assist in helping the child overcome his fear. They were fantastic! They were more than willing to help and even offered for the boy and his parents to be taken on a bus trip with them as the only passengers in the hope that it will restore his confidence by turning his bad experience into a good one.”
Gemma was full of praise for the company’s response, and added that: “In most cases, the companies I approach on similar matters are very willing to help when the needs of autistic children are explained to them.”
You would think that between managing Ben’s support needs, her day job, and running Get Set Go, there would be little time left for much else. But Gemma has also been helping out at North Ayrshire Foodbanks since the beginning of last year. Her work there includes responding to enquiries made through their website and Facebook page which she can do from home. Her Friday evenings are spent helping clients at the main food bank distribution point in Ardrossan.
Gemma estimates that she gives up around eight hours of her time spread across the week to do voluntary work. She laughs as she remembers that on her first volunteering shift she spent seven hours manning the collection point at Sainsbury’s in Saltcoats.
When asked why she had decided to become involved with the food bank she said: “I wanted to do something that didn’t revolve around the world of disability. The food bank gave me the opportunity to help people from the wider community.
“The people who use the food bank are a more varied group from the those I’m normally involved with, but their support needs are just as important.
“People can find themselves in food crisis for all sorts of reasons… It could be the person who has just been made redundant and their benefits haven’t kicked in yet. It could be the family whose kids qualify for free school meals, but come the summer holidays they have to find the means to feed three extra mouths. It could be the single mum on minimum wage whose washing machine breaks down and then needs to spend what little money she has on a new one. It could be anyone.
“For many people it can be a daunting prospect to come in and say ‘look, I’m in crisis and I’ve got no food, and I really need your help’. But that’s what we’re here for, so I try to make their visit as nice an experience as possible. I just chat to them and hope they feel welcome.”
Now that much of the worry around Ben’s longer term education requirements has been lifted, Gemma is able to start thinking about returning to her former career but there is no sign that she’s likely to give up her voluntary work any time soon.
“Volunteering makes me feel fulfilled,” says Gemma. “The world needs people who are prepared to give up their time. And sadly, with ever-increasing cuts in funding, public services are closing down — not starting up. People who find themselves facing any sort of crisis now will have much more difficulty getting help from government agencies — they’ll have to go out and look for it themselves, and the voluntary sector is where they’ll find it.”