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As an adult, is a PDA diagnosis conducive to obtaining support?
  • I am an adult (25) who already has a diagnosis of PDD-NOS, given as F84.8 under the ICD-10. I received this approximately a decade ago, alongside diagnoses of Social Phobia and Conduct Disorder. As I have grown older and gained a fuller understanding of myself and my condition, I have realised that I very much meet the criteria for PDA. Looking back on my assessment report I am very surprised that this was never suggested given how well my behaviour typified the profile. Instead, and despite my diagnosis specifying PDD-NOS, the report primarily related my difficulties to that of Asperger’s syndrome, and thus presented me as far more capable than I am. This has never been very useful, and it left me in the dark for many years until I encountered this site.

    In the time since my diagnosis I have achieved very little. Since leaving education shortly after my GCSE’s, unable to cope with the demands and stresses of sixth form life, I have spent the majority of the last eight years behind a computer screen. I’ve never been employed and I rarely leave the house other than to help my mother with the shopping. Unlike many on the wider Autism spectrum, I have no desire to work or engage with services that want to “help” me. Of those self-diagnosed adult PDA-ers I’ve talked with, this does not seem to be particularly uncommon.

    Sadly, my parents’ health is declining and they are no longer able to support me financially. As such I’m now looking to claim the financial support I’m entitled to, namely ESA and PIP, based on my communication difficulties, anxiety problems, and other more generalised issues typical of an ASD. In pursuit of this my GP has referred me to a clinical psychologist who specialises in Autism.

    I am uncertain as to their intention, especially given I already have an Autism diagnosis, but I am hoping that they will be willing to reassess my condition in the context of my adult life. My previous assessment primarily frames my condition in the context of behavioural difficulties I had at the time; it does very little to reflect my poor level of function as an adult. I have no idea if any sort of reassessment or rediagnosis is possible – perhaps someone here will know if it is – but I very much hope that they will provide some sort of updated report as to my problems, and how they relate to my spectrum diagnosis.

    My dilemma now is whether I should go down the route of trying to get a specific diagnosis of PDA, or simply focus on my more general ASD-related difficulties, even if they are ultimately less pervasive. On one hand, I believe it is the best fit for my specific problems, but on the other I feel it won’t be conducive to obtaining any support, financial or otherwise. I fear that it will only serve to distract from the more salient issues, such as my communication and sensory difficulties. The average person knows very little about Autism, and even less about its nuances, so I can’t help but think that most will see me as simply “refusing to do the things I don’t want to do.” Understandably this gets far less mileage when trying to persuade the relevant people that I have a disability, so I am naturally questioning if there’s any value at all in trying to discuss my dysfunctions in the wider context of PDA. Sadly, as anyone who has tried to claim disability benefits will know, PDA-specific traits have very little merit on their own.

    I know my situation is somewhat unique and my concerns somewhat unusual, but if anyone has gone through a similar process or has any thoughts I’d really appreciate the input. There's very little information on this side of things, and what little there is seems focused on adolescents and children, who are far more likely to get something tenable out of the PDA label.
  • Many, many professionals are not aware of PDA even now, so as you received your diagnosis years ago I'm not surprised it wasn't considered. I would agree with you that it could be PDA from what you write.

    despite my diagnosis specifying PDD-NOS, the report primarily related my difficulties to that of Asperger’s syndrome, and thus presented me as far more capable than I am.



    I'm not sure what you mean by this, is it that you think people with Asperger's are more capable than those with PDA, as that's not the case? Or do you mean that the PDD-NOS diagnosis presents you as more capable (I assume you mean "milder" ASD)? There is no such thing as mild ASD no matter what anyone claims. All ASDs require you to be impacted in day-to-day life and each subtype of ASD is a spectrum as well. Some manage far better than others within any one subtype.

    I would query your GPs referral as the psychologist cannot help you with completing PIP and ESA forms. The best thing would be to look for a local charity that can help, even your council might have someone from adult social care but a charity is your best bet. Go onto the National Autistic Society website and look up local NAS groups to see if there is one near you that can help.

    In one way it would be really useful to see the psychologist to discuss the PDA, they can certainly revise your diagnosis but you could be stuffed if your area doesn't recognise PDA, as many don't. The reason this is happening is stupidly due to them not understanding that PDA is an ASD sub-type, they seem to think people want standalone diagnosis of PDA as not being an ASD and they are denying it's existence based on it not appearing in diagnostic manuals. The same diagnostic code you had for PDD-NOS can be used for a PDA diagnosis, as can any of the others. For the DSM (American diagnostic manual) it would be diagnosed as ASD as they diagnose all ASDs under one umbrella now DSM-V code 299.0 (autism spectrum disorder). For the ICD (international diagnostic manual) it would be: ICD10 F84.0 (autistic disorder), F84.8 (Other pervasive developmental disorders) or F84.9 (Pervasive developmental disorder, unspecified) but noted on diagnostic reports as "ASD-PDA subtype", "ASD-PDA profile", "ASD with demand avoidance etc." So the psychologist could write an up-to-date report stating that you have any of the bolded profiles. The ICD seems to be following the DSM in diagnosing all ASDs as an umbrella diagnosis now anyway.

    PIP is worth appealing for if you have been turned down the first time. Many people with ASD do get DLA/PIP.
  • You might find this useful reading too: https://spectrumnews.org/news/people-with-milder-forms-of-autism-struggle-as-adults/

    (I hate the term "milder" but it's about PDD-NOS). BTW as you were diagnosed from the ICD it's 'PDD Other', PDD-NOS is the DSM equivalent.
  • Holly59
    Posts: 2,586

    ajruffley said:

    I am an adult (25) who already has a diagnosis of PDD-NOS, given as F84.8 under the ICD-10. I received this approximately a decade ago, alongside diagnoses of Social Phobia and Conduct Disorder. As I have grown older and gained a fuller understanding of myself and my condition, I have realised that I very much meet the criteria for PDA. Looking back on my assessment report I am very surprised that this was never suggested given how well my behaviour typified the profile. Instead, and despite my diagnosis specifying PDD-NOS, the report primarily related my difficulties to that of Asperger’s syndrome, and thus presented me as far more capable than I am. This has never been very useful, and it left me in the dark for many years until I encountered this site.

    In the time since my diagnosis I have achieved very little. Since leaving education shortly after my GCSE’s, unable to cope with the demands and stresses of sixth form life, I have spent the majority of the last eight years behind a computer screen. I’ve never been employed and I rarely leave the house other than to help my mother with the shopping. Unlike many on the wider Autism spectrum, I have no desire to work or engage with services that want to “help” me. Of those self-diagnosed adult PDA-ers I’ve talked with, this does not seem to be particularly uncommon.

    Sadly, my parents’ health is declining and they are no longer able to support me financially. As such I’m now looking to claim the financial support I’m entitled to, namely ESA and PIP, based on my communication difficulties, anxiety problems, and other more generalised issues typical of an ASD. In pursuit of this my GP has referred me to a clinical psychologist who specialises in Autism.

    I am uncertain as to their intention, especially given I already have an Autism diagnosis, but I am hoping that they will be willing to reassess my condition in the context of my adult life. My previous assessment primarily frames my condition in the context of behavioural difficulties I had at the time; it does very little to reflect my poor level of function as an adult. I have no idea if any sort of reassessment or rediagnosis is possible – perhaps someone here will know if it is – but I very much hope that they will provide some sort of updated report as to my problems, and how they relate to my spectrum diagnosis.

    My dilemma now is whether I should go down the route of trying to get a specific diagnosis of PDA, or simply focus on my more general ASD-related difficulties, even if they are ultimately less pervasive. On one hand, I believe it is the best fit for my specific problems, but on the other I feel it won’t be conducive to obtaining any support, financial or otherwise. I fear that it will only serve to distract from the more salient issues, such as my communication and sensory difficulties. The average person knows very little about Autism, and even less about its nuances, so I can’t help but think that most will see me as simply “refusing to do the things I don’t want to do.” Understandably this gets far less mileage when trying to persuade the relevant people that I have a disability, so I am naturally questioning if there’s any value at all in trying to discuss my dysfunctions in the wider context of PDA. Sadly, as anyone who has tried to claim disability benefits will know, PDA-specific traits have very little merit on their own.

    I know my situation is somewhat unique and my concerns somewhat unusual, but if anyone has gone through a similar process or has any thoughts I’d really appreciate the input. There's very little information on this side of things, and what little there is seems focused on adolescents and children, who are far more likely to get something tenable out of the PDA label.



    https://www.pdasociety.org.uk/adult-life

    Hi ,
    Welcome to the Forum . I would by my experience with my boys over the years would say “ Yes “ to a formal diagnosis of PDA .

    It will help with your claim for ESA for starters . They should put you into the ESA Support Group where you do not have to sign on or attend the regular support sessions . You would be sanctioned every session if you failed to turn up .

    There are more Adults approaching the PDA Society for Advise now than families as the awareness grows . That’s why the “ Adult “ section has been recently added .

    PDA is also listed on PIP and DLA paperwork .

    You will need help and support with the paperwork , someone like NAS , Autism Iniative ,d Citizens Advise . You do not need a formal diagnosis of PDA for PIP but it would be up to you when you decided to apply . You have enough evidence as it is with your other issues .

    Hope this helps .

    Pat xx
  • PDA is also listed on PIP and DLA paperwork.



    Pat's right, here it is (see P4): http://docs.wixstatic.com/ugd/5143d7_e222975eb349455690179638d0cb3af4.pdf
  • Thank you both very much for your input.

    My comment regarding Asperger’s was in respect to the absence of language delays and cognitive deficits requisite to the diagnosis. While this is no guarantee a better functional outcome, it does seem to have a bearing in what people expect from you. My assessment report has a strong subtext that I am capable by virtue of intellectual ability, and a significant section is dedicated to the incongruity between my academic performance and my intellectual ability. While I didn’t meet the criteria for Asperger’s syndrome, the comparison is continuously made due to how well I score on the various psychometric tests they administered. This has been a terrible bane, and many people have inferred that I needed less support or sympathy because of it.

    In respect to my referral, it was certainly not done under the intention that they could help me complete the ESA or PIP forms. Simply put, the assessment report I have is getting old, and while the diagnosis is certainly relevant, the context in which it is discussed is not. It primarily focuses on the behavioural difficulties I had at the time, namely school refusal and meltdowns at home. While it does touch on some of the more debilitating issues, it does not elaborate on them in any compelling way. Essentially, I’m hoping is that they will produce something more relevant to my current needs, which I can then use as evidence in my application for PIP and ESA. I also feel it’s good to have my situation detailed on my medical records. I’ve been out of the health system for a long time, the only exception being some very bad panic attacks I got a few years ago.

    Sadly, I know how difficult disability benefits are to obtain. This seems doubly true for PIP, and if anecdotal evidence is anything to go by I will probably have to take my case to tribunal. A face-to-face assessment is going to be difficult enough, and I just feel attending a tribunal will be impossible for me. It's primarily for this reason that I am so intent on gathering sufficient evidence, as it will significantly reduce the likelihood my claim will be rejected.

    I appreciate the link to the medical guidance. Sadly DLA is no longer available, and all new claimants must apply for PIP. My understanding is that PIP is awarded based on very specific criteria, and that a diagnosis alone has little value. For example, they cannot reasonably infer from a diagnosis of Social Phobia (F40.1) that I meet the criteria for Activity 9, descriptor D: “Cannot engage with other people due to such engagement causing overwhelming psychological distress to the claimant.” It seems they desire more elaborated reports, which are ideally more specific to the extent of my condition and its effect on my day-to-day living. Given how little relevance the demand-avoidant profile has on meeting said descriptors, I naturally question the relevance of a report that discusses it.

    Perhaps I am misunderstanding; the guidance issued by the DWP is both voluminous and confusing. I have absolutely no experience actually claiming these benefits, and I've only given most of the longer documents a cursory glance. The document I'm primarily referring to is this one:

    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/665635/pip-assessment-guide-part-2-assessment-criteria.pdf

    Sorry for the lengthy reply. I simply felt it important to clear up any ambiguity!
  • the absence of language delays and cognitive deficits requisite to the diagnosis.



    Well there are cognitive deficits in Asperger's by nature of the condition. Cognition is understanding and as you imply, despite very high intelligence someone can have deficits in understanding other things. Examples would be humour, sarcasm, safety, nuance, body language and not infrequently daily life skills such as self-care and food preparation can be impacted. Executive dysfunction is common in Asperger's. Asperger's is a learning difficulty, if not a learning disability.

    My assessment report has a strong subtext that I am capable by virtue of intellectual ability, and a significant section is dedicated to the incongruity between my academic performance and my intellectual ability.



    It's odd that they have noted the incongruity and yet deemed you capable. Only so much compensating is possible through intellect. And that may be reliant on how it is learned, e.g. if someone explained things to you in a way you didn't understand, you may not learn it until someone comes along and explains it in a way that works for you. It's not instinctive.

    With PDA you can put on the form that you are requesting either a decision without a PIP assessment, just on papers, or ask that they visit your home. Try not to build it up to be something it might not turn out to be.

    There was a court ruling against DWP in December that all PIP cases with a mental health aspect need to be reviewed due to failure to consider mental health difficulties on an equal basis as physical ones. So you should find a PIP application treated more fairly than it would have been in the recent past.

    Guidance on conditions for DLA should still apply to PIP.

    Demand avoidance affects everything as everything in life can be considered a demand. From getting out of bed in the morning, to brushing your teeth or even eating. I read somewhere that even breathing can be seen as a demand. PDA is a spectrum like ASD itself is, so your own unique presentation of it will be what is relevant to PIP. Your need for control and avoidance will affect so many things and also your other autistic traits will, your anxiety will go very high from small things, it's a significant disability.

    You basically need to explain (and not only rely on what the professional reports say) how your disability affects you day to day, if something takes you a lot longer, or is more difficult than it would be for someone without PDA. There are websites that give really good advice such as Benefits and Work, that have information to explain how you should complete the application and how to appeal etc.

    Don't worry about the length of your post, I have Asperger's so I am often verbose myself.
  • I completely agree with your thoughts on Asperger’s. Sadly, not everyone has this level of knowledge, and I find that the public is largely unaware of how debilitating the “higher-functioning” ASD’s can be. This therefore distorts the general perception of what someone with a given diagnosis is capable of. I am glad to see that things are gradually being rolled into the “Autism Spectrum” as I believe it encourages people to look more at the individual and rely less on their assumptions.

    I really appreciate the advice on PIP, and I will be sure to take the time to go through the information on Benefits and Work. I am trying my hardest to be optimistic about the process, but it’s not very often that I hear any positive stories, especially for claims that involve ASD’s. Perhaps this is just self-selection bias – those who get rejected or mistreated have reason to speak up – but the uncertainty of the whole thing still causes a lot of anxiety. It’s not always easy to remain rational about these things.

    Ultimately, I’m confident that I qualify, even without mentioning the difficulties specific to PDA. The challenge will be to prove this, and I can only hope that whatever comes out of my recent referral is sufficient. I’m much better at explaining with written words, so I will try my hardest to persuade them to do paper-based assessment. Thank you for making me aware of this option; it’s done much to assuage my anxieties about the process.

    I will endeavour to update this discussion with regard to my outcome. I’m sure anyone who finds themselves in a similar position will benefit from the information.
  • I’m much better at explaining with written words



    Likewise, so I understand.

    I will try my hardest to persuade them to do paper-based assessment. Thank you for making me aware of this option



    I only know because this is what our eldest child had. I knew she would never go for a PIP assessment and I asked them for a home visit instead, but they said they could do it on papers so they didn't need any assessment. We had quite a few reports though, diagnostic, recent update confirming PDA presentation and CAMHS reports. So you will need robust evidence probably to get them to agree this is sufficient and get the right outcome. If you can get any letters from anyone else that knows you, aside from the referral you have that will help. Anything that says about your day-to-day functioning, any mental ill-health and difficulties.

    If you do end up having to have an assessment, ask them to do a home visit and record it!

    Good luck and yes do let us know the outcome.

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