World Autism Awareness Day is being marked across the globe this week. JAMES METCALF reports on the problems facing young adults with the condition - and their families - across our district.
Half of adults with autism in the UK live with their parents.
Many more struggle to find employment, and this can mean parents find it increasingly difficult to cope with the round-the-clock care their children need.
The National Autistic Society (NAS) reports that up to 695,000 people in the country may be living with autism - and autistic spectrum disorders (ASD) affect one in every 100 children.
What happens to these children when they grow up is an issue of increasing concern for those people faced with autism every day.
This national picture is mirrored across our district, with families doing their best to help children face the tough transition to adulthood when living with such a disorder.
And it isn’t always easy to find help, according to a GP who works with the National Autism Unit, a UK-wide provider of services to people with ASD.
Dr Quinton Deeley, who works with the unit, said: “Many regional towns and cities simply do not have the resources available to offer these highly specialised services and it’s left to aging parents and local NHS teams to do their best to fill the gaps.
“ASD manifests and then develops in many different shapes and sizes as people move into adulthood.
“Parents are often left without knowing who to turn to after their child finishes school.
“They go from having tailored support and assistance to being the sole carer for their fully grown adult son with very different needs but there is no set text to help them.
“In other cases, some people with ASD grow up without their conditions being recognised, only to be diagnosed in later life. Ultimately, it is a question of providing opportunity for independent living – both for the individual and the parents.”
The lack of specialised services in Harrogate to alleviate some of the difficulties this presents led to the formation of a Harrogate branch of the NAS in 2007.
The branch started as a parent support group and is run by parent carer volunteers who raise awareness of autism and campaign to improve support for individuals and families affected by ASD.
Along with youth club in conjunction with Harrogate Borough Council for children with ASD, as well as a Game Zone group for anyone interested in video games, the branch also holds an annual conference to discuss the issues associated with autism.
This year they will be addressing the challenges facing people with autism in transition to adulthood.
Group member Colette Hampson said: “We are all volunteers and we don’t get any direct funding from the NAS, so we rely on donations and grants and individual fundraising.
“We are here for parents and carers of people with autism, and we are working towards making a change.
“For support, people come together to try and make a difference in the area. The branch has the back-up of the NAS, but they can’t do everything, so we are people on a local level doing something.”
This kind of support can be crucial to young people with ASD becoming adults who are having to face the problems of accommodation, independent living, and employment without any dedicated specialist services in their local area.
The group has no paid staff and is made up of parents and carers working to affect change.
For more information or to contact the team at the Harrogate branch, call 07824473871, email NASHarrogateBranch@nas.org.uk, or go to their website at www.harrogate-autism.co.uk.
Penny Andrews, who lived in Harrogate as a child but now lives and works in Leeds, was not diagnosed with autism until she was 30 years old, and the process of diagnosis was self-initiated.
She said: “Diagnosis was something that I sought out for myself, and I found it really helpful. For the whole time I was at school I had a horrible time and I dropped out of university twice.
“I kept doing jobs that I wasn’t good at and I didn’t get on with people there, and I wasn’t where I should be in life.
“I felt like everyone hated me and I thought I was rubbish, so the diagnosis was a way to put things right.
“I would have found so many things a lot easier had I been diagnosed earlier, because I would have been able to understand why things were the way they were and people would have treated me a bit different.”
Following education, Penny was out of employment for six years. She said this could have been avoided if she had the support she needed when she was growing up in Harrogate.
An understanding that autism is a life-long condition is something the Harrogate branch of the NAS is hoping to bring to wider attention.
What is autism spectrum disorder?
The NHS defines Autism spectrum disorder (ASD) as a condition that affects social interaction, communication, interests and behaviour. It includes Asperger syndrome and childhood autism.
The main features of ASD typically start to develop in childhood, through the impact may not become clear until the person goes through a change such as beginning sachool.
In the UK, it’s estimated that about one in every 100 people has ASD.
There is no ‘cure’ for ASD, but a wide range of treatments – including education and behaviour support – can help people with the condition.
- Problems with social interaction and communication – including problems understanding and being aware of other people’s emotions and feelings; it can also include delayed language development and an inability to start conversations or take part in them properly.
- Restricted and repetitive patterns of thought, interests and physical behaviours – including making repetitive physical movements, such as hand tapping or twisting, and becoming upset if these set routines are disrupted.
- Children, young people and adults with ASD are often also affected by other mental health conditions such as attention deficit hyperactivity disorder (ADHD), anxiety or depression.
The exact cause of ASD is unknown, but it is thought that several complex genetic and environmental factors are involved. In some cases, an underlying condition may contribute to ASD.