DESPERATION has prompted two Pembrokeshire families to start a fundraising campaign, so they can get their young sons the support they need.

Local mums Clare Norton, from Milford Haven, and Louise Beale, from Puncheston, are raising money to pay for private ASD assessment, after being told the health board cannot help them.

Both believe their sons show signs of Pathological Demand Avoidance (PDA) – a condition on the autistic spectrum that means they suffer high levels of anxiety when faced with seemingly everyday tasks, often resulting in emotional ‘meltdowns’.

After her son Aaron – now 11 - was referred for assessment by his doctor, mum-of-three Louise waited almost a year before being told he could not be helped.

“We feel that it has been such a waste of time sitting on a waiting list, only to be told then that the condition our son was referred to them for will not be assessed for,” said Louise, who has now set up a petition calling on the health board to develop a diagnostic service for PDA in Pembrokeshire, Ceredigion and Carmarthenshire.

“A correct diagnosis of PDA is a sign-post to the correct support and strategies for these children and those who support them,” she said.

“In the long term, a diagnosis is invaluable to these children and their families and is also likely to be very cost effective for the health service.”

Clare’s seven-year-old son Ethan began displaying behavioural problems at an early age, but she was told they were too complex to diagnose.

After appointments with a clinical psychologist and a paediatrician, Ethan was diagnosed with combined Attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), Tourette's syndrome and a sleep disorder.

In September he was referred to Hywel Dda health board for further assessment, but after a five-month wait his family was told there is currently no provision for PDA assessment within the health board area.

Although the health board has said assessment for the condition “will be considered as part of the work being undertaken into developing services for neuro-developmental disorders for both children and adults”, there is currently no timeframe for this.

Frustrated at the lack of support available, the pair have organised a fundraising evening at Crundale Hall this Saturday (May 7), so they can raise the £4,000 needed for specialist assessment, and start getting Aaron and Ethan the help they need.

Medium Darryl Jenkins will headline the event, there will be tarot readings, and there are a huge selection of fantastic raffle prizes on offer, includes family tickets to watch The Scarlets, tickets to Blue Lagoon, Torch Theatre and Clerkenhill Farm, hair and beauty treatments, a photoshoot, restaurant and shopping vouchers, and much more.

Tickets are £10, and doors open at 6.45pm.

On June 10 they will host a fundraising disco for under-12s in Eddies, with headlining DJ Toby Ellis, and on June 12, Clare, Louise, and another local mum Claire Gray, will also be abseiling down Pembroke Castle keep to raise further funds.

To add to Louise and Clare’s total, visit gofundme.com/unt7ekwc.

You can also sign the petition by searching on Change.org, and learn more about both families’ stories by searching ‘Aaron & Ethan's Fight for the Right to P.D.A Assessment’ on Facebook.