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Thoughts on the PDA Society Questionnaire to Clinicians
  • http://www.pdasociety.org.uk/forum#/discussion/4875/pda-traits-questionnaire

    "The majority (two thirds) had only come across a small number of children that exhibited extreme demand avoidance, so personal experience was relatively limited. This is to be expected as PDA is relatively rare."



    I find it hard to believe PDA is considered rare*. Autism rates are well over 2% (despite what official figures say) and there are many PDA forums, blogs and websites out there now so clearly a lot of individuals with PDA are out there. I read so many stories of parents with autistic children (diagnosed and undiagnosed) who clearly have PDA and have been let down. I think there are large numbers out there undiagnosed or misdiagnosed/partially diagnosed with ASD and someone needs to start collating statistics.

    Only 33.3% of clinicians claimed good up-to-date knowledge of PDA (not all of those are in a diagnostic role).

    26.9% are in a diagnostic role - "Of those whose role is diagnosis, half said they would diagnose PDA or ASD sub-group PDA,". So only approximately 13% surveyed would provide a PDA diagnosis. Even though others would include some wording about PDA in the description that's not a PDA diagnosis. This is very poor. I am confused by the claim a third diagnose PDA, because whilst under a third are in a diagnostic role, it's actually 1/6th as only half of those in a diagnostic role would diagnose PDA. (Someone let me know if my crap maths abilities have let me down there!)

    "...an NHS practitioner can seem unhelpful in what they're able to advise or sanction as other, less regulated practitioners are often willing to make rather sweeping claims, and that just increases confusion and distress for families.’"



    All this demonstrates to me, is a stuffy, behind-the-times, unresponsive and inflexible NHS! Note the immediate claim of 'less regulated' (based on what evidence?!) as a way to detract regarding private diagnoses and make them appear less trustworthy. Nasty. NHS clinicians seem to often work in a culture of tick-box fear, having to consult with a team and no development/learning or use of expertise and experience to understand and diagnose.

    Rather proven by this statement:

    "There was a general feeling that diagnosis was held back by a lack of national recognition, and also by the attitude of other professionals locally."



    They are just too scared to think for themselves and see what is right in front of them. (Lack of recognition by other professionals in your area score beats lack of local policy and practice hands down!)


    *http://bjp.rcpsych.org/content/194/6/500.long

    "Prevalence of autism-spectrum conditions: UK school-based population study" 2009 study by Simon Baron-Cohen et al.

    "By adjusting the estimate derived from the SEN register (that is, based on whole classes and not a 29% response) for the additional number of cases that would be expected if all the children were directly observed, the prevalence estimate is 157 per 10 000 or 1 in 64 (95% CI 99–246).

    Overall, for boys and girls together, for every three known cases, there are at least two undiagnosed cases of autism-spectrum conditions (making the prevalence well over 2%) in the primary school population, or a ratio of 3:2 (known:unknown). There is no evidence of a difference in the undetected estimate of cases for boys and girls, despite a clear difference in the overall ratio of boys:girls with autism-spectrum conditions."
  • KazK
    Posts: 255
    I love the bit where it says of those who felt they had good knowledge about PDA only a small percentage had heard of the questionnaire (EDAQ). You only know what you know! ( hope I'm thinking about the same report , err... will go and read the rest of your post now, hmmmm!)
  • It's depressing reading. I know it's a tiny sample but there is no reason to suspect it's not representative of clinicians as a whole across the UK. Some of the quotes from clinicians were shocking.
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    It's depressing reading. I know it's a tiny sample but there is not reason to suspect it's not representative of clinicians as a whole across the UK. Some of the quotes from clinicians were shocking.



    It's not rare in my opionion. The majority of folks involved in the process , GPs, School Nurses, Teachers , LS , Educational Psychologists , CAMHS Staff are absolutly clueless. Can't even recognise Autism and Asbergers never mind PDA. As for the Co Morbid give me strength before we go down that route.

    A bunch of parents with children on the Spectrum would make a far superior job than the majority of Specialists in a fraction of the time and cost.

    The majority are paid an awful lot of money for talking total crap.

    We go back to the " Listen to the Parents". We know and learn to understand a hell of a lot more than them.

    Wonder how many CAMHS staff are Moonlighting in private clinics at weekends ? There are only a few I would trust that's for sure by my experience and they were not in CAMHS. They ain't on my CHUMS list.

    What's the Autism Spectrum Condition to make it less stigmitazed. Also that ASD , that's how I say it, is being more recognised. They tell some good ones in this report. Not where I live mate.

    https://www.researchgate.net/publication/272074838_Late_Diagnosis_of_Autism_Spectrum_Disorder_After_Initial_Negative_Assessment_by_a_Multidisciplinary_Team

    With prevalence growing of Autism Spectrum at an alarming rate.............
  • What an interesting link Holly59.

    "Subsequent late diagnosis of ASD after an initial ASD-negative comprehensive assessment is a common clinical experience. Reasons for this scenario may include evolving diagnosis as well as missed and overdiagnosed cases of ASD."



    Not quite sure though, how an initial negative diagnostic scenario which is corrected later relates to over-diagnosis though. Are they implying the later diagnosis is in error? I would imagine that most unlikely. Although much more likely to be the case in the USA than the UK where under-diagnosis is rife!

    And here, is sadly yet more of the parent blame thing (looks like this study is Israeli):

    "...in 2008, the Israeli government changed the “benefit basket” for children with ASD, offering more treatments up to the age of 18 years, in addition to the treatments provided by the special education system, potentially creating an incentive for an ASD diagnosis. Our findings are consistent with this reason, as between 2004 and 2007, 17% of the study cohort received an ASD diagnosis, whereas 83% were diagnosed in the next 4 years after the implementation of the new benefits (2008–2011). The combination of increased benefits for children with ASD, in addition to increased ASD awareness, may cause providers to feel pressure from families to assign ASD diagnoses in borderline cases."



    As for borderline cases...I just don't believe someone can be 'borderline' or 'have traits' but be NT, this is a misunderstanding of the nature of the autistic spectrum, I believe you are either autistic or not.
  • They then answer my question with this!

    "Late Diagnosis of Autism Spectrum Disorder Missed or Over-Diagnosed?"

    https://www.researchgate.net/publication/268111345_Late_Diagnosis_of_Autism_Spectrum_Disorder_Missed_or_Over-Diagnosed
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    What an interesting link Holly59.

    "Subsequent late diagnosis of ASD after an initial ASD-negative comprehensive assessment is a common clinical experience. Reasons for this scenario may include evolving diagnosis as well as missed and overdiagnosed cases of ASD."



    Not quite sure though, how an initial negative diagnostic scenario which is corrected later relates to over-diagnosis though. Are they implying the later diagnosis is in error? I would imagine that most unlikely. Although much more likely to be the case in the USA than the UK where under-diagnosis is rife!

    And here, is sadly yet more of the parent blame thing (looks like this study is Israeli):

    "...in 2008, the Israeli government changed the “benefit basket” for children with ASD, offering more treatments up to the age of 18 years, in addition to the treatments provided by the special education system, potentially creating an incentive for an ASD diagnosis. Our findings are consistent with this reason, as between 2004 and 2007, 17% of the study cohort received an ASD diagnosis, whereas 83% were diagnosed in the next 4 years after the implementation of the new benefits (2008–2011). The combination of increased benefits for children with ASD, in addition to increased ASD awareness, may cause providers to feel pressure from families to assign ASD diagnoses in borderline cases."



    As for borderline cases...I just don't believe someone can be 'borderline' or 'have traits' but be NT, this is a misunderstanding of the nature of the autistic spectrum, I believe you are either autistic or not.


    I agree with you, you either are or you aren't . There is no borderline . That's just a phrase for , " Not entirely sure at the moment" .

    Why was there such a poor response? Is it because they don't understand PDA, don't believe it exists , just didn't have the time to reply. It seems so annoying and tragically frustrating that after all the PDA Society's efforts of sending out these guides there is still such a poor understanding.

    Until my , " What do you know about PDA listen and learn approach " ,to my GP he had never heard of it. Out came the books, reports, PDA society questionairre. He was so desperately wanting to help my boys, and all the others who CAMHS have failed, he has listened . Sadly not many are like him.
  • In my blog post here https://planetautismblog.wordpress.com/2014/04/29/females-with-autism-the-tragedy-of-ignorance/ the last link in the post called "Invisible at the End of the Spectrum: Shadows, Residues, ‘BAP’, and the Female Asperger’s Experience" says it well. (For anyone who didn't know, BAP is broad autism phenotype and is supposed to describe NTs with some autistic traits).

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