Children may no longer be able to get NHS referrals for assessment and diagnosis of Autism Spectrum Disorder (ASD) in South West London.
South West London St George’s Mental Health Trust discussed plans to no longer accept referrals for assessment and diagnosis of ASD in children at a board meeting this month. Children would only be referred if they have an additional mental health condition that requires treatment, such as attention deficit hyperactivity disorder, or depression.
The decision would affect children in Merton, Wandsworth, Richmond, Kingston and Sutton as they all fall under the South West London and St George’s Mental Health NHS Trust.
A spokesman for the Trust told Wimbledon Guardian no decision has yet been made, but it was proposed children with suspected autism should be managed by schools and other services, and do not require formal diagnosis of autism.
A private assessment of autism can cost up to £3,000, but some local authorities may not accept these results and would insist on an NHS diagnosis before providing services, according to National Autistic Society.
Without the diagnosis, people with autism may have difficulty claiming disability living allowance which many families rely on to pay for extra care. They may also be unable to put their children forward for places at schools with a specialist stream for autistic children without a formal diagnosis.
One parent said the psychological effect of a diagnosis is also important. They said: “For our son, having the diagnosis gave him such relief he could explain to others – they could understand him better and more importantly he could understand himself.
“It’s had such a positive effect on his overall self-esteem and happiness. Without this, I fear as he gets older he would have become more isolated and at risk of depression.”
The concerned parent also has a daughter who is currently undergoing assessment for autism. They said they were “truly appalled” to hear she may not get the chance for assessment.
The parent said: “Parents of children with ASD already have to fight to get the services their children require and support for the parents.
“This will not just affect the children not diagnosed, but their whole family.
“Schools already struggle to meet the needs of pupils with additional needs with limited funding, they are not in the position to take on the role of the NHS’s Children and Adolescent Mental Health Services (CAMHS). They may also turn a blind eye to some children’s problems or misinterpret their behaviour and needs.
“I am truly horrified a huge number of children can be written off like this to save money in the short term.”
A spokesperson for South West London St George’s Mental Health NHS Trust said: “In the recent Trust board meeting in May, suggested changes to our CAMHS Neurodevelopmental Assessment Service were presented.
“No decision has been made by the Trust or by the clinical commissioning groups. Any changes would require detailed engagement with stakeholders and Merton CCG, as lead commissioner working with partner CCGs, will talk to local people before reaching any final conclusions on how best to go forward.
“We recognise the concerns of families of children with a neurodevelopmental condition and the groups who support them and that these must be addressed in any proposal brought forward for consideration.
“The Trust and South West London CCG commissioners are committed to working together to ensure young people access the most appropriate service for their needs. We need to get the model of service and service capacity right for the range of needs across SW London.”
Sarah Lambert, head of policy at the National Autistic Society, said: “We are deeply concerned by this proposal to restrict autism assessments to children with accompanying mental health problems.
“This will leave many local children without access to a diagnosis and unable to access the specialist support they desperately need, which will threaten their long-term prospects and put a greater strain on many already vulnerable families.
“We believe this goes against Clinical Commissioning Groups (CCG) legal duty to make sure children in their area can access a diagnosis service.
“The National Autistic Society strongly urge these CCGs in South West London to reconsider their plan and to reassure worried local families that their children will be able to access a timely autism assessment.
“We are writing to the commissioners to relay our concerns directly and to offer to help them make sure that this vital service is available.
“Being autistic can be challenging at times but we’ve seen again and again how awareness, understanding and early support can make all the difference.”
Do you have a child that would be affected by the changes? Email Adela at firstname.lastname@example.org