Newton Aycliffe mum speaks of the challenges of raising an autistic child

In many ways, Thomas Hughes from Newton Aycliffe, County Durham, is just like any other 12-year-old boy. He loves playing on his computer, has a cheeky sense of humour and is obsessed with super heroes. He also argues with his big brother and seeks a cuddle from his mum when he is upset.

However, unlike other children, Thomas is unable to explain why he is unhappy and this struggle to communicate often manifests itself in anger and violence. For Thomas is severely autistic and finds it difficult to interact with others.

It is just one of the ways the condition affects him but, for his devoted mother Gail Hardaker, it is hardest to bear.

“At the moment Thomas doesn’t want to go to school,” she said.

“Every morning he cries his eyes out and screams the house down. “That is the hardest part.

"I can’t just say to him “what’s wrong son? What is going on?” because he can’t respond.”

Autism is a general term for a group of complex brain development disorders. Each individual is affected in a unique way but many share key traits, including problems with communication and social interaction, restricted patterns of behaviour, problems coping with everyday life, heightened sensory awareness and specific areas of highly tuned ability.

Thomas was diagnosed with autism at the age of two.

“I knew there was something wrong but I did not know what,” said Miss Hardaker.

“It was a relief to receive the diagnosis as it meant we could get Thomas the help he needed.”

Miss Hardaker knew the road ahead would not be easy but did not realise how complex Thomas’ needs would become. As he got older, his behaviour grew more challenging and her experiences with various support agencies were not always positive.

Like many children with autism, Thomas is fearful of straying from his normal routine and becomes anxious when surrounded by people he does not know. He also struggles to sleep and usually gets up at around 5.30am, meaning Miss Hardaker’s day also has to start at this time.

“When he is the house I have to watch him all the time,” explained the 32-year-old mother-of-two.

“At times it can feel like we are prisoners in our own home.

"I am only human after all and when you are sleep deprived and he is shouting and screaming it can be hard to bear.”

Thomas’ difficult behaviour has impacted on areas of family life and Miss Hardaker has to work hard to ensure her 14-year-old son Connor gets the attention he deserves.

“I think in the past Connor’s needs have been overlooked because it is not easy for us to go for days out as a family,” she said.

“I get eight hours of respite a week and I use that to spend quality time with my other son.”

At present, Thomas is enrolled in a local authority special school but Miss Hardaker is determined to secure him a place at the new North East Centre for Autism in Newton Aycliffe.

Located on the site of the former Aycliffe Secure Young People’s Centre, the centre offers care, full-time education, short breaks, early years’ provision, leisure activities, residential accommodation and outreach services.

It is run by the North-East Autism Society and boasts specialist teaching staff and purpose built facilities.

Unfortunately, last year, Durham County Council turned down Miss Hardaker’s application to fund Thomas’ place at the centre.

“Thomas spent a few days at the sister school in Sunderland and was achieving things he never had before,” she said.

“It is a false economy. I was told it would cost more but if his behaviour gets so bad he has to go into residential care it will cost more than £200,000 per year.”

Miss Hardaker was also turned downed for mobility allowance and is currently fighting an £18 cut to her weekly housing benefit brought about by the controversial “bedroom tax.”

Under the new system, Ms Hardaker is classed as having an unoccupied room as her two sons could share a room – a move she says would have a negative impact on both children.

“I feel I have to fight for everything,” she said. “I am not someone that likes to ask for help and when I do and I get knocked back it is so disheartening.”

According to statistics from the National Autistic Society approximately 67 million people worldwide are affected by autism, yet it is often misunderstood.

World Autism Awareness Day aims to change this by shining a light on autism, developing an international knowledge of the condition and emphasising the importance of early diagnosis and intervention.

Miss Hardaker shares this aim and has had the WAAD ribbon tattooed on her arm to encourage people to ask her questions.

“It really has worked,” she said. “Quite a number of strangers have mentioned it and I have gone on to explain about Thomas’ autism.

“I welcome this. When you are in the supermarket and your child starts shouting or screaming you can feel people judging you. I just think to myself “if you only knew what it was like.”

For more information on autism visit autism.org.uk or ne-as.org.uk

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