Britain's first independent purpose-built centre dedicated to people with autism has officially opened in Staffordshire.
It will transform the way millions in the UK affected by the condition can be helped.
The new £18 million Caudwell International Children’s Centre (CICC), set within the grounds of Keele University, is the first of its kind in the UK - bringing together assessment, diagnosis, family support and research into autism, under one roof.
Designed and built in consultation with people with autism, parents, carers, clinicians and experts, the facility includes state-of-the-art assessment suites, a sensory garden to help children interact with nature and therapy suites for on-going workshops for families and support programmes.
It will allow parents and children across the UK to work with a multi-disciplinary team of specialists in one place and enable families to get a diagnosis for their child in as little as six weeks.
An early diagnosis of autism can be vital in helping families understand their child's behaviour, as well as putting support in place to help them cope.
Under current NHS guidelines children who are thought to be autistic are meant to be assessed within three months. But a report by former Health Minister Norman Lamb in July 2018, revealed families are being forced to wait more than two years to be assessed and almost four years to receive a diagnosis.
Mum-of-six Victoria Priest said she spent nearly a decade trying to get a diagnosis for her daughter Layla, 10, who first exhibited symptoms at nine months old.
She said: “Layla was our third child and at nine months old we took her to the doctor. She rocked severely and I knew something wasn’t right but we were told to ignore it by health professionals and told that she’d grow out of it.
“As she got older, she became disruptive. We'd tried everything to get some sort of diagnosis, but nobody seemed to care and nobody would listen to us.
“Layla was 10 when she went to Caudwell in March this year and within two weeks of her assessment, we had a diagnosis - after nearly 10 years of trying. Staff at Caudwell were the first people who actually listened to us and looked at our evidence. They were observing things in her behaviour that I didn't even realise.
“This new centre will provide hope for thousands of families like us that are fighting to get a diagnosis for their children.”
Trudi Beswick, CEO of Caudwell Children, said: "We have spent the last 19 years listening to families consistently telling us they do not get the support they need. It is their stories that are at the heart of this project and their needs have shaped the new service and the Centre.
“When all evidence points to the long-term benefits of early intervention, the delays families face are not acceptable and Caudwell Children aims to change the way families access support and prove there is a better way.
“By keeping the needs of autistic children and families at the forefront of our service and helping as many children as possible at the Centre we will develop the necessary body of evidence to ultimately influence clinical guidelines and collaborate with partners to make a lasting impact on society’s understanding and acceptance of autism, changing the futures of all autistic people, in the UK and internationally.”
John Caudwell, Philanthropist and Founder of Caudwell Children, who personally funded over £10million of the cost to build the state-of-the-art facility, said: “I have met so many mums and dads who have fought tooth and nail to get referred to the right professionals and even then, found themselves in a complex and confusing system, waiting months for appointments and years for a diagnosis.
“They told me about the woeful inadequacies in diagnosis, education and funding for autism, which meant they helplessly watched their children deteriorate without any support.
“This can’t carry on, I thought, and I backed the charity’s plan to fundraise for and build the UK’s first world-class centre, dedicated to multidisciplinary autism diagnosis, support and research.
“Opening the new centre today will transform the way millions of people in the UK affected by the condition can be helped.”
As well as speeding up waiting times for assessment and diagnosis, the CICC will also offer long term and on-going support for families following an autism diagnosis, through educational workshops and programmes, teaching sustainable interventions that can be implemented at home.
The centre will also be working closely with clinical and academic partners from the international autism community to share insight and research from the front line of assessment and diagnosis, helping to further the evidence base around the condition.
The CICC will publish reports and research from leading clinicians, and share knowledge through conferences, teaching and training hosted on site.
Dr Matthew Johnson, Director of Clinical Services and Research, Caudwell Children said: “Our objective is to provide a gold standard clinical service and the required evidence base for autism interventions to eventually enter mainstream healthcare, giving families a brighter future following diagnosis.
“Most areas in the UK have an autism service of some description, but it’s a postcode lottery. Parents feel they have to jump through hoops and that can be frustrating. Families feel let down and ignored.
“Once given an autism diagnosis, some parents are left high and dry with no ongoing support. They are given no advice about how to support their child as Autism services are focused on assessment and diagnosis, rather than after-care.
“What we’re offering with CICC is the whole pathway: timely assessment in a building which is purpose built, giving a diagnosis within a matter of weeks and in one place as well as on-going support so families are equipped to help their child in the best way possible.”
There are around 700,000 people on the autism spectrum in the UK – that's more than 1 in 100. If you include their families, autism is a part of daily life for 2.8 million people2
Professor Trevor McMillan, Vice-Chancellor of Keele University, said: “We are excited to be working in partnership to develop further understanding of particular conditions in children through research collaboration between the University and Caudwell Children.
“We hope that through these types of innovative partnerships, our research impact can be maximised alongside providing the local area with a fantastic provider, in this instance of family support services, equipment, treatment and therapies for disabled children and their families.”