Add PDA to ICD-11 urgently so the school refusal can be dealt with appropriately

0 have signed. Let’s get to 1,500!

My four-year-old son has been off nursery since the beginning of May due to nursery refusal and very irregular attendance ( once or twice a fortnight ) has been achieved since the beginning of October ( with me being present at all times ) with the use of PDA strategies from NAS and PDA Society. Underpinning his avoidance is high anxiety about conforming to everyday demands and of not being in control of the situation, even the mention of nursery would send his anxiety levels off the scale. 

My son's EHC plan is not fit for its purpose as it does not accurately reflect his level of need, and this is a reflection of me not being listened to and my son's needs not being understood. My son was supposed to start a mainstream school this Sep that was named on his EHC plan against my wishes and after it was confirmed that the school could not meet his needs.

The LA has originally rejected my request for deferment saying that it was not in my son's best interest not to start the school this September although there was no plan in place on how to resume his attendance at nursery or the importance of a transition to school if his attendance at the nursery could be resumed.

At the TAC meeting, I have requested the network to watch the video footage of difficulties dropping my son at nursery, and his nursery refusal which was also witnessed by the Speech and Language Therapist at nursery at the end of April.

As the CDT - Child Development Team refused to provide information about my son's nursery refusal or failure of ASD interventions applied to LA despite all my efforts to communicate this EHC Coordinator made an assumption that my son is simply refusing to attend because he is 'bored'.

When I set on a quest to obtain a differential diagnosis for PDA also known as Pathological Demand Avoidance ( autism sub-type ) for my son as 'typical' ASD interventions were having more of an adverse effect on him, my son already has a diagnosis of ASD since Mar last year I had no idea about the challenges that were to follow.

I was puzzled by my son's autism as children with ASD I saw at special needs nurseries were nothing like him. I had a light bulb moment when I came across the PDA profile in children with autism. As a result, I have attended the PDA conference in Reading and parental program for PDA in Norwich.

The CDT disagreed that my son may have PDA and refused to engage further, instead, I was asked to go back to my son's GP and pursue the PDA assessment myself. After a year of waiting and chasing my son's GP, a request for an assessment has finally been approved via IFR, however, I was told that my son can only be assessed at South London and Maudsley which has no specific policy for PDA, therefore cannot assess or diagnose PDA.

While in the middle of a complaint to NHS about their services and after I have submitted letters about my son's nursery refusal and failure of ASD interventions applied by the Early Years Coordinator, the clinicians made a referral to social care. Social a care held the professionals meeting without my knowledge and with the select few where other professionals involved in my son's case were excluded from attending, three out of four of these professionals were involved in the referral to social care in the middle of my complaint about their services. Based on this "professionals meeting" my son's case was escalated to the Child Protection Conference as my son was apparently at risk of serious harm which proved not to be the case.

The joint plan on how to resume my son's attendance was put in place with my son's nursery back in September based on recommendations from PDA Society and National Autistic Society and revised when needed where my son's response to a variety of situations would be the main indicator. The most recent revision also includes recommendations from the latest SALT report from a different clinical practice commissioned by the LA. I am still unsure whether school environment can work for my highly anxious son loves to spend time outdoors or on public transport. The Tribunal Hearing has been adjourned and provisionally scheduled for end-March and my son is due to be assessed for PDA at the private diagnostic centre at my expense.

After joining several ASD, PDA and school refusal groups on Facebook I was horrified to see that school refusal is an ASD issue and not just a PDA issue however 70% of PDA children are out of school (the highest number in comparison to other ASD profiles). Not only parents struggle to obtain ASD diagnosis or EHC plans for their children, but they are also pressurised into imposing the attendance on their autistic children ( diagnosed or undiagnosed ) which negatively impacts their mental health. 

The 2018 survey conducted by the PDA Society highlights that the school environment does not work for many children with PDA. If this is the case then both children and parents should be supported appropriately and not ignored, dismissed, penalised, reported to social care or sent to attend parenting courses that do not work for children with PDA as PDA is not a parenting issue and most importantly left without support because they've reached the ultimate avoidance - nursery/ school refusal.

After consulting with IPSEA - Independent Parental Special Education Advice I understand that education does not necessarily need to take place in the school setting as incorrectly advised by LA if the child's high anxiety and demand avoidant behaviour is preventing them from attending the setting as LA has a duty to provide Education Otherwise than at School under s61 Children and Families Act 2014 for such children.

Thank you

I would like to thank Sidings Early Years, PDA Society, National Autistic Society, SENDIAS Brent and IPSEA for all their support and advice and everyone who signed this petition, much appreciated.

Essential Reading:

Fears vulnerable children with rare form of autism are being left behind by NHS

Being Misunderstood
Experiences of the Pathological Demand Avoidance Profile of ASD

Teachers Guide to Understanding PDA

Education: Stories of PDA

New global diagnostic manual mirrors U.S. autism criteria ( NO MENTION OF PDA )

The £70 million council costs of fighting – and losing – against parents at the SEND Tribunal

Image Courtesy of PDA Booklet

Want to share this petition?