As the glitz and glamour of Children In Need raises a new jaw-dropping total, Mark Winters will be sitting in his bedroom, alone. He has not washed, he has not shaved, and he is piling on weight. Mark Winters is depressed.
Skip back a few years and he was the bubbliest child in the playground. Yes, Mark had Asperger’s Syndrome but, thanks to support from the government, growing up was one big adventure in the local park: he was indeed the archetypal dimple-faced child Children In Need cameras love. But then Mark turned 18. Bye-bye support, bye-bye money, and bye-bye future. The sad truth is that too many youngsters with learning disabilities stop receiving the vital help needed from government and charities once they become adults. The bright faces on Children In Need may be smiling now, but what happens ten years hence? Left to slide quietly away from society, I invite you to listen to Mark’s story: the child that Pudsey forgot.
Mark was the tender age of ten when diagnosed with Asperger’s Syndrome, known as an Autistic Spectrum Disorder, its effects continue to present new challenges each day.
Mark’s mum, Sue, explains: “Asperger’s Syndrome is a high functioning Autism which means those who it affects can be extremely clever.
“However, socially Mark finds it hard to mix with people. He doesn’t know how to read body language and facial expressions and he hates noisy, crowded places.
“Where you and I would be able to filter out the things we have no interest in, Mark sees and hears everything so he is over-loaded with information.”
Asperger’s also means that Mark doesn’t understand appropriate behaviour and his conduct can seem disconcerting, leaving him frustrated and angry.
A string of anxieties stemming from the autism has further altered twenty-one-year-old Mark’s life.
“A fear of the dark means he never leaves his room at night and he has to have a bright light on constantly,” explains Sue.
“He’s also sensitive to clothes and won’t wear certain materials, while he can tell if foods he eats are not the usual brand, meaning he will refuse the meal.”
However, luckily for Mark, during his school years he was placed under the Children with Disabilities team, with visits from a carer for four hours per week plus an evening call.
Such strong support saw Mark flourish, allowing Sue and husband David to enjoy some much needed time together.
“Mark used to look forward to his carer coming,” smiles Sue.
“They used to plan activities each week. Sometimes they went to the cinema or bowling alley or they would play on his bike and go-cart. This got Mark out regularly and stopped him from being so withdrawn.
“He built a rapport with his carer and could then talk about things that might be worrying him.”
CAMHS (Child and Adolescence Mental Health Service) also provided a crucial lifeline, visiting the family at least every 6 months, helping with problems, interacting with Mark’s school and offering family therapy.
“It was a difficult time for us,” remembers Sue.
“When Mark was 10 his dad David was diagnosed with ME, suffered from depression and lost his job.
“On top of this my Dad became ill and eventually died, while I also began to have several health problems.
“Mark found all this very hard to cope with as he has to have a routine and stability, but CAMHS helped us deal with this.”
But the help wasn’t to last. As the Winters’ times continued tougher than ever, the coalition government wielded its axe and cruelly cut the support that held together the family’s fragile welfare. Aid from CAMHS also terminated immediately when Mark reached adulthood.
“When Mark turned 18, everything changed,” says Sue, gravely.
“The Children with Disabilities team together with Connexions had managed to get him in at Luton Training and Mentoring.
“It was to help him socially, to get him to ride on public transport, become more independent and maybe get him into further education or a job.
“But in July 2012 this stopped. Budgets were being cut everywhere. All they could offer him then was college, which was no good as he just couldn’t cope with the school-like atmosphere.”
When Mark was 18 he was also referred to Adults With Learning Disabilities but deemed too clever to receive help. Now a further desperate bid has yielded little.
“We have seen a different social worker, but we still haven’t been able to set up the direct payments which would enable Mark to have 3 months of support from a carer,” sighs Sue.
To make matters worse, the social worker has now left.
“Mark was referred to the local mental health service but they did an assessment and said he didn’t meet their criteria,” explains Sue.
The effects have been devastating.
“Mark slowly became withdrawn. He had nothing to look forward to and stopped coming out and about with me. This in turn made him afraid to go outside. He began to go on the computer all night and sleep all day. He goes on a game called 2nd Life and talks to people on the other side of the world,” says Sue.
“He doesn’t want to go out at all and doesn’t take any notice of anything except the game. He stays in his bedroom all the time.
“It upsets us and worries us so much to see him like this. He was such a happy, lively child.”
The media’s vicious demonisation of those receiving benefits didn’t help either, making Mark feel even worse about his situation.
“I don’t think it’s fair that disabled people receive less support when they become 18,” says Sue angrily.
“There are a lot more problems in some respect with looking after a disabled adult. Obviously there is the size which is an issue if they become violent, while you also worry as a parent because, as you get older yourself, you could develop your own health problems.
So as Pudsey finishes his smiling and waving for another year, spare a thought for his forgotten children. How many more cases are there? The lack of support amidst the depth of the cuts is disgraceful. Yes, the children on the television appeal undoubtedly deserve our support but conditions such as Asperger’s and Down’s Syndrome are not going to vanish at 18. In the big adult world the disabled will need to be more independent and will need every morsel of help. All Sue wants for Mark is a carer and some psychiatric support, so that one day he can have a place of his own. But the government will continue to cut hard and fast, and Mark will remain alone in his bedroom. His light will be on, but doubtless, like so many disabled adults in the world, it will be far too small for anyone to notice.