Autistic children 'face three-year diagnosis delay' in NI

Autistic children in Northern Ireland are waiting almost three years to be diagnosed, it emerged today.

The statistic was revealed as the Government faced fresh demands to boost resources for the condition which campaigners have described as a hidden disability.

Ulster Unionist peer Ken Maginnis uncovered the scale of the waiting lists more than six months after he raised the issue in the House of Lords.

Lord Maginnis, who has a seven-year-old grandson with autism, said: “It is scandalously unforgivable.

“It really is something the Government should be ashamed of.”

The revelation comes as Autism NI (PAPA) prepares to publish a joint report with its Welsh equivalent.

The charity will use the Whitehall launch this week to call for greater investment to help families cope with the biggest rising developmental disorder in the world.

It is estimated 3,500 children of school age and 20,000 adults in Northern Ireland have autism.

Symptoms can generally be detected from the age of three and early diagnosis is critical to meet the specific needs of youngsters and help them develop.

But inquiries by Lord Maginnis discovered 686 children in the North, suspected of having autism, were awaiting assessment at the end of last year.

The maximum wait was 35 months.

The former Fermanagh & South Tyrone MP said: “A parent might see something and suspect Autistic Spectrum Disorder when their child is about three .

“If it then takes three years the child will be six before it gets an assessment and could have had two years schooling.

“The maximum wait should be three months, not 35.”

Together with early assessment autistic children should have their education tailored to their specific needs and be allocated a dedicated classroom assistant, the peer said.

Lord Maginnis also called for a Northern Ireland-wide review of services, as well as increased investment in staff and resources.

Autism is a neuro-developmental disability which disrupts the development of social and communication skills.

Half of people with the lifelong condition have learning difficulties.

Dr Claire Hughes has two sons, nine-year-old Aaron and six-year-old Martin, with autism.

Dr Hughes, 41, said: “The psychological trauma of parents who have to wait up to three years for diagnosis must be horrendous.

“The trauma is that they are watching their children and hoping that they don’t have it.”

The mother-of-three said a formal assessment programme for children was only introduced by the four Northern Ireland Health Boards within the last decade.

As a result there has been a gradual build-up of prospective cases.

But Dr Hughes claimed parents were also being let down by the provision of aftercare.

The civil servant from Lisburn, Co Antrim said: “When you get a diagnosis there is nothing there.

“You are very much left on your own and abandoned.

“Autism falls within so many different areas – occupational health, speech and language therapy and sensory integration therapy – and they all have massive waiting lists.”

On the challenges of coping with autism, Dr Hughes said: “It is a nightmare for parents.

“The children don’t sleep well and are up during the night.

“A lot of them also have eating problems.

“I have problems getting my son Martin dressed as he has sensory difficulties and I have to leave it to the last minute to put his shoes on.

“I have also been told off by people for my son’s (Martin) behaviour in a leisure centre because he looks so normal.

“It is a hidden disability.”

Dr Hughes and her husband, Damien Fitzpatrick, 40, regularly have to replace furniture broken by Martin and both have been forced to work part-time to care for their boys.

Research has found parents of children with autism have higher stress levels than parents of children with any other physical or learning disability.

PAPA, which has cross party support, hopes to raise the profile of autism and force ministers to address the concerns of parents.

Dr Hughes said: “I would love to see a programme of care for autism so that as soon as there is a diagnosis people spring into action.

“There should be an individual assessment for each child as their needs are unique.”

The prevalence of autism has tripled in the North in the last three years and PAPA described the inaction of the authorities as a litany of shame.

Arlene Cassidy, director of the charity, said: “It is tragic that parents are having to wait longer than ever for a diagnosis for their children.

“The added tragedy is that there is not even a sign of a regional strategy for autism.”

Ms Cassidy expressed despair at recommendations in the Northern Ireland Review of Mental Health and Learning Disability that autism should be consigned to mental health services.

She said: “It is not a mental illness. It is a developmental disorder and therefore deserves services in its own right.

“Autism provision in Northern Ireland has been built up on the conviction of parents and committed professionals.

“There has been no silver spoon for autism.”

PAPA’s partnership with Autism Cymru (Welsh charity) and the joint report, Government and Autism: Opportunities and Solutions, will be launched on Wednesday.

The event, at the Wales Office in London, will be attended by politicians including the UK's Secretary of State Peter Hain and SDLP leader Mark Durkan.

:: For more information visit: www.autismni.org