Aaron & Ethan's PDA Fight

Aaron (11) & Ethan (7) are two boys living in Pembrokeshire.  

Both families have had many years of struggling to obtain any kind of support and recognition of their struggles, with lots of time sat on waiting lists.

The community Paediatric consultant strongly believes that both boys have Pathological Demand Avoidance (P.D.A), which is an Autistic Spectrum Condition.

P.D.A although  part of the Autistic Spectrum, presents with additional complex difficulties.  A person with P.D.A suffers with such high levels of Anxiety, that even everyday demands (however small) can cause acute anxiety.  This anxiety regulary manifests itself in agressive physical meltdowns.

This high anxiety is in conjuction with the typical sensory, social, communication and language problems  experienced by people on the Autistic Spectrum.

P.D.A is extremelly difficult for the sufferers and the whole family. 

Due to P.D.A being so complex, assessment requires a specialist assessment process and different strategies to typical A.S.C.  An incorrect or inconclusive diagnosis can be extremelly detrimental to the person's emotional and mental wellbeing.

Currently in Pembrokeshire the local Health Board (Hywell Dda) are refusing to carry out assessment for P.D.A, even though both Aaron & Ethan's Paediatrician strongly believes they have the condition.  This is not due to the fact that they are 'unable' to assess for P.D.A, but that they have just 'chosen' not to assess P.D.A.  Both families feel let down by Hywell Dda and feel the lack of communication is totally unacceptable.  The time sat on the very long waiting list, now seems a complete waste of time and both boys' wellbeing has deteriorated within this time.  

Both boys' parents have been in constant contact with the Health Board, but up to now have only heard that they will definately not be assessing P.D.A  but they have not received any 'next steps' or advice.  Both families face constant daily battles within the household due to the difficult nature of P.D.A and this news from Hywell Dda is just adding to the stress, upset and difficulties.

Due to this both families have no other option than to try and fund private specialised assessments.  However these funds are not within reach for either family.

Both families & some friends will be taking part in various fundraising activities and events to try and raise these much needed funds.  At present both Mums and a good friend will be abseiling down Pembroke Castle in June 2016.

If anybody has any fundraising ideas please feel free to contact us.

Helping us to achieve this goal, would help both boys now and in the future.  The correct assessment and any subsequent diagnosis will basically change the boys' lives and give them access to the correct life-long support.

Any monies raised will be split between Aaron & Ethan and will go towards funding a specialised Private Assessment out of county (due to our Health Board refusing to assess P.D.A)


Both families will be extremelly grateful for any support you can give.

Many Thanks for taking the time to read this and showing your support.

The Beale & Norton Familes.