Without a specialist knowledge, diagnosis of autism can be hit and miss

CHILDREN with autism could be missing out on vital help and service because their parents are given little support, a father has claimed.

Dr Ian Greenway said too many parents are facing the twin challenge of caring for their autistic child and having to discover what services and support are available to help them on their own.

And he said that many people still believe the Rainman stereotype that everyone diagnosed with an autism spectrum disorder are gifted.

His comments come as the National Assembly’s all-party party group on autism has heard appeals for NHS staff to have more awareness about autism and its impact.

Dr Greenway, whose 17-year-old son Harry has Asperger’s syndrome, said: “When parents of young children have a diagnosis of autism they need support.

“A lot of parents will struggle to know where to turn, what services they need and which ones will be most appropriate for their child.

“They will struggle to know what they are supposed to be doing, how to handle certain difficulties with their child.

“That means that a lot of children may miss out on things for a long time simply because their parents don’t know who to turn to.

“There needs to be something there for parents so they know which way to go.”

Dr Greenway, a consultant anaesthetist at the Royal Gwent Hospital, in Newport, also said there are a lack of services in Cardiff – his family live in the capital – following the retirement of an autism specialist.

“There is no recognised specialist autism diagnostic service in Cardiff, which I personally find ridiculous, especially as we have plenty of services for children who are not suffering from autism.

“The way the system works is that you need an autism diagnosis to get anywhere with services. The main aspect of education in the past in terms of getting anything has been through the statementing process.

“That’s difficult anyway but it’s pretty impossible to get anywhere with the education authorities if you don’t have a diagnosis in the first place.

“Unless you have someone with a special knowledge of autism, diagnosis will be hit and miss – generic paediatricians are not specialists in autism.”

Dr Greenway’s son Harry was seven when he was diagnosed with Asperger’s syndrome and has undergone speech therapy and been treated by the children and adolescent mental health services for depression.

“Harry is very bright in terms of academic achievement but as a young person he still faces huge social difficulties,” he said.

“Although he has achieved academically – he did his GCSEs last year and got As and A stars – people like him have difficulties holding down jobs. His future is still very uncertain.

“We have concerns about the years ahead of him when he will be challenged by increasing independence.”

Shirley Parsley, national co-ordinator for the National Autistic Society Cymru. said: “Often parents of children with autism need basic support, such as social services providing an accurate assessment of their child’s needs and schools making adjustments for their child’s condition.

“They also tell us that they need guidance on how to manage their child’s behaviour, and how to better communicate with them. Sadly, many parents of children with autism in Wales don’t get such help and can often feel that they are being left-out or ignored.

“Through our work with the Welsh Assembly Government and local authorities, these gaps are now starting to be addressed.

“Even when appropriate support for a family is available, many parents still don’t know where to go, and continue to struggle by themselves. However, all over Wales, there are a number of local autism, or learning disability parent support groups, which parents can attend to socialise, blow off steam, and share vital information with others in the same situation.”

A Welsh Assembly Government spokesman said: “Wales is the only country in the UK to have a government- led strategy for autism.

“As part of the work in support of the development of the autism spectrum disorder (ASD) action plan, all local authorities have been asked to identify how many people with ASD live in their areas and to map existing services.

“We are working with the public and voluntary sectors and people living with autistic spectrum disorders in Wales on key initiatives to help ensure children and young people with autism are diagnosed sufficiently early and that they get the levels of provision and support that they need.”

A spokeswoman for Cardiff and Vale University LHB said: “Cardiff and Vale still has the autism clinic and clinical staff make diagnosis in two main ways.

“Younger children who present with developmental difficulties or communication problems are seen by a multi-disciplinary team – each carry out part of the assessment process and together agree a diagnosis. Older children are often referred to the children and adolescent mental health service and can then be seen by other health professionals as required.”