Parents of children with autism face postcode lottery

Published by Nia for Tree House in Housing and also in Communities, Education, Health, Local Government

Parents of children with autism face a postcode lottery when it comes to the quality of services available to their child, according to new research from TreeHouse (www.treehouse.org.uk), the national charity for autism education. Autism now affects one in 100 children in the UK.

A Freedom of Information request* revealed that the average age of diagnosis ranges massively depending on where you live, from under 3 years old in some areas to as old as 7 years in others. Experts agree that diagnosis before 3 years is vital in giving children access to the right education early, which can make a dramatic difference to a child realising their potential. Forty per cent of local authorities had no information at all on the average diagnosis age in their area.

Many parents have been forced to take drastic action to improve the quality of autism education services available to their child, with one in ten parents moving house in order to live in a local authority area with better services. A further 30% of parents said they would consider doing so.

TreeHouse’s Freedom of Information request also revealed the extent of variation in resources dedicated to children autism:

• Nearly a quarter (24%) do not know how many children with autism they have in their area;
• More than half of local authorities (54%) do not know how much money they spend on children autism services;
• 81% of local authorities do not have a dedicated employee looking after services for children with autism;
• 70% could not give specific details on what autism-related training they provide for teachers in their state schools.

According to TreeHouse, the lack of consistency in autism care and resources risks destroying the future chances of tens of thousands of children with autism. It is also damaging the lives of their parents – ninety per cent of whom said they feel “isolated” by their situation, 85% feel “judged” and 78% said there is not enough support given to them currently.

The worrying findings, released on UN World Autism Awareness Day, come as TreeHouse launches a brand new website – www.talkaboutautism.org.uk – which will be an online community where parents and carers of children with autism can share their experiences and find vital information on autism education.

Ian Wylie, TreeHouse Chief Executive, said: “These findings reveal a shocking lack of consistency in how local authorities support children with autism and their families, most clearly borne out in the dramatically different ages at which a diagnosis is made. There is also an inexplicable lack of knowledge about even the most basic facts on the size and scale of the issue in their area. Given how much of a postcode lottery there is across the UK, it’s not surprising that the parents we’ve spoken to feel so isolated and confused.

“TreeHouse’s new talkaboutautism.org.uk website is aimed at helping parents cope with some of the shortcomings in autism services by providing them with a reliable source of information and allowing them to share experiences with other parents in a similar situation.”

Best-selling author Nick Hornby, whose son has autism and attends TreeHouse’s school in north London, said: “When my son was diagnosed with autism there was a total lack of information and advice on what we should do next. It seems that little has changed – and that is a national scandal.”