6,000 people in Suffollk with autism

MORE than 5,400 people across Suffolk could be suffering from autism – without even knowing it.

As few as 1% of cases in the county are being diagnosed, and the figures have prompted the National Autistic Society (NAS) to call for more comprehensive support for the condition to stop the postcode lottery of services sufferers and their families can access.

There is currently no register of people with the lifelong developmental disability, meaning many vulnerable people could fall through the net, while services remain “patchy”, the society has warned.

In some cases, children with difficulties are simply branded as being “awkward”.

Alan Bicknell, NAS regional co-ordinator with responsibility for the county, said: “There are pockets of good services in Suffolk but it is not available across the county and there is not enough of it.

“It depends on where you live as to whether your children get the right support or not. More needs to be done.”

A spokeswoman for Suffolk County Council's education department said there were currently 197 students with autistic spectrum disorders who receive educational support, while there were a further 70 children with Asperger syndrome or Attention Deficit Hyperactivity Disorder (ADHD).

But NAS estimates around 6,000 people in the county could have an autistic spectrum disorder.

Its Autism Suffolk Centre is currently the only resource for children, their parents or carers that covers the whole of the county and it has been flooded with demand.

The Kesgrave-based project can only offer services to youngsters aged between five and 13 but in the three years it has been running around 600 families with children in the age bracket have registered.

Lindsay Towns, manager of the centre, said the lack of services had prompted more than 50 parents to contact Bob Blizzard, Labour MP for Waveney.

She said the centre was stretched to the limit but there was still a “huge need” for people with autistic spectrum disorders aged over 13.

But many professionals still do not refer parents onto the centre as they do not know about it and she said Suffolk could do more.

“Some of our families that contacted us a couple of years ago are now not eligible for support,” she said.

“We cannot offer services to children over the age of 13 as we are funded by the Children's Fund. Parents are finding it hard. There really is not much else for them to go to.”

The number of people with autism has risen sharply over the last 50 years, but experts do not know whether it is due to raised awareness and a widening of what is classified as autistic spectrum disorders, to include Asperger, or an actual increase in cases.

Mr Bicknell said many people who have not been diagnosed with autism would be older, with their condition arising before autism was understood, or brighter children, whose difficulties could be misinterpreted as simply being “awkward”.

A register would enable education professionals to help autistic children as they move to different schools, as well as acting as a tool for social, health and housing departments when planning for demand and services.

With NAS envisaging it as a multi-agency record, it would allow organisations to share information.

Mr Bicknell said: “If there was a register then people would not fall through the net. These people are very vulnerable and just because they do not fit the right box does not mean that their needs are any different.

“The most important thing is that they get the support they need.”

rebecca.sheppard@eadt.co.uk

Amanda Strowger first noticed something was not right with her son Zak when he was only two months old.

But it took nine years of fighting before he received the full diagnosis he needed to receive support at school.

Zak is loving and gentle, and, as a typical nine-year-old, likes going swimming, collects fossils and loves animals.

But like many children with autism, his hidden disability surfaces in obsessions and he finds it difficult dealing with social situations.

Mrs Strowger said: “Without the help of the Autism Suffolk Centre I would still be struggling.”

Zak was eventually diagnosed as having autism, scotopic sensitivity – which affects his vision, particularly when reading, and means he has to wear green-tinted glasses – dyspraxia, which stops fine motor control like holding a pen, and dyslexia.

The family has since had to move house into a catchment area for a secondary school that can fulfill Zak's needs.

Mrs Strowger said: “I was at my wits end and did not know what to do or where to go. I really want to raise awareness of the centre, so parents who might just hear those warning bells, thinking something isn't quite right, will know there is a place they can contact and get help.”

n Autism, including Asperger syndrome, is a spectrum condition meaning it occurs in varying degrees of severity. It is characterised by difficulties in communication, social interaction and social understanding.

n Around 40% of all children with autism wait more than three years for a clear diagnosis.

n Boys are four times more likely to develop autism than girls.

n At the upper end of the spectrum, autistic children suffer with severe learning difficulties.

n People with Asperger syndrome can appear academically intelligent but have social problems and obsessional interests.

n Autistic people can have little or no language skills and their senses can be very sensitive, with distress caused by bright lights or loud noises.

n Social situations are often a problem for autistic children. This is why they often retreat into comfortable routines or repetitive actions.

n They typically have trouble relating to other people and may not be able to read body language or recognise people's expressions.

n There is no “cure” for autism.