Petition update

Survey of 1.5k Shows PDA *IS* a Distinct ASD Subtype!

Autistic Parent
United Kingdom

May 20, 2018 — Dear Supporters,

many of you will have seen the results of a very recent PDA survey done by PDA Society ( compiled by Sally Russell OBE:

"Individual features, or traits, of autism impact people to varying degrees and in different ways. Nevertheless, the PDA profile has become established as it has a high ‘pattern recognition’. The constellation of symptoms in adults and children with a PDA profile leads to specific challenges."

"71% of 79 adults and 70% of 1194 parents reported that they had found a lack of acceptance or understanding of PDA a barrier to getting relevant support

67% of 675 parents reported that they were dissatisfied with the help received from their Child and Adolescent Mental Health Service (CAMHS); only 20 individuals reported that a CBT-type approach had helped."

"Most parents describe the ‘lightbulb moment’ when they read a description of the PDA profile for the first time."

"More importantly, parents overwhelmingly find that the so-called PDA strategies’ help; Unfortunately, the usual ASD approaches which encourage a high level of structure and directness can exacerbate issues."

"Life for those with a PDA profile is challenging. Parents almost universally described their children as having a need to be in control (96%) with 80% experiencing severe anxiety, 80% challenging behaviour and 80% with sensory issues. The difficulties of getting through daily tasks, morning and bedtime routines, dinner times, and getting into school were also significant problems."

"Parents reported that 70% of young people of school age (686 children) were either not enrolled in a school or were struggling ‘all the time’ or ‘regularly’ to get in. Only 7% said they never having trouble accessing school. 6% were being home educated by choice.

This is school refusal at much higher levels than you would expect to see in the overall ASD population.

Indeed, special schools that are set up to support those with ASD were also often unable to help; attendance at special schools was especially poor, with 67% of young people struggling to get in all the time or regularly."

"Analysis showed that almost two thirds (66%) of parents said that very often the needs of their child were either not considered, not properly understood, or not properly implemented. Some also explained that attempts to use ASD strategies had been found not to work."

"The data from parents is irrefutable; the school environment does not work for the majority of these young people, even in special schools."

"Sadly, very few described psychological interventions that had helped, in fact only 20 people identified either CBT or a CAMHS
psychologist as having helped their child."

"They (parents) were also very clear about the ineffectiveness and even damage caused by traditional parenting and ASD strategies."

"This survey demonstrated that parents are told ‘we don’t diagnose that in this area’."

"The problem is that when professionals say ‘we don’t diagnose that’ they also don’t assess for impairments properly or give appropriate advice. On top of this, families find that services are unavailable as a result.

This appears to be discriminative and at the very least is a failure to implement NICE Guidelines which require an assessment of impairments, which NICE identifies can include ‘demand avoidance’"

"Of those whose child had been given a diagnosis, more than half felt it was the correct one and most of the rest felt that what they had was incomplete. There was also a large proportion undiagnosed...

Only 10% of adults had a diagnosis that they felt was correct and they highlighted the difficulty in getting a diagnosis as an adult."

"Diagnoses and services are being refused in some areas with some professionals telling people 'we don't recognise that here'; individuals mentioned they had experienced this in Dorset, Kent, Bristol, Brighton and Hove, North Yorkshire and Wales,"

"Failure at this stage leads to a cascade with services being unavailable, or misdirected, and advice not being specific and so actually often being counterproductive.

Of the parents surveyed, 70% said that they had found that a “lack of acceptance of PDA as a valid ‘thing’” was a barrier to getting support."

"With a name comes understanding and knowledge, a way to find common experiences and an identifier …even just something to search for online. For those with the condition, it can also provide more of a sense of identity."

"Caring for a child with complex autism can deplete personal resilience and lead to poor health. 94% of parents said that their emotional health had been affected. 80% reported that their relationships and 80% that their mental health had been affected. More than half said they were ‘struggling’ or ‘not coping’ and for those wanting to work only 7% said that their caring had not affected their ability to do so."

"Adults with PDA are increasingly explaining their experiences and needs which is further shining a light on the details of the profile."

"Leaders must confirm that those who have a PDA or PDA profile diagnosis should not be barred from services, and referrals for PDA assessments should not be rejected."

"Reading about the experiences of nearly 1,500 individuals should be a wake-up call to those supporting and providing services to the autistic community. Individuals who may be described as having a PDA profile are being neglected and even discriminated against because of a lack of acceptance and understanding of their needs, leading to a failure to put in place reasonable adjustments."

It is shatteringly clear from these survey results, that PDA is a distinct subtype of ASD; that typical ASD strategies largely do not work; that families are being horribly failed by education and CAMHS services due to lack of recognition of this subtype and that change needs to happen fast.

Please keep sharing and signing the petition to bring that change and get the WHO to formally recognise PDA in the ICD11.

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