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Can a PDA diagnosis in older teen be unhelpful?
  • bexter
    Posts: 2
    My 17 year old daughter has always been difficult: stroppy and oppositional. She flies off the handle and we walk on eggshells - she is chatty and charming one minute and swearing and hurtful the next. She used to spit at me when she was little, have meltdowns, would lie and worryingly in her early teens steal things (which has stopped). We did have limited success with star charts when she was 4 or 5 years old. She would daydream at school, her primary school teacher called her a "loner", She is intelligent but would often scribble in her books and didn't care.

    In the past she has found it so difficult to keep friends, and she didn't "get" the playtime rules, the others would tell her she wasn't wanted, this was awful for her. At the age of 16 things were brought to a head and she told us she felt sad and out of control. We sought and received private ADHD diagnosis at her request due to her frustration at er inability to focus She tested very strongly ADHD, and she is now medicated as and when needed. She seems much happier in herself as she understands that she is not "naughty" or "stupid", but that her brain works differently. She no longer seems down and has counselling. She is a lovely, caring, attractive, extremely creative young woman who can be very engaging and charming, chatty - sometimes too talkative IMO. We do love her to bits, but at home she can be sweet and loving but also can be horrific, swearing, rude, aggressive etc (typical teenager some might say, but on the extreme side). Only when asked to do something or challenged. We try to be firm, it's easy to let her stomp off and leave her alone.

    So I read about PDA- and this is what struck me about some other things that she does:

    She literally retreats into a fantasy world reading and writing fantasy stories - writing books of them. I don't mind her doing that actually. She loves all the geeky fantasy type stuff of Dr Who, Harry Potter and Fan Fiction forums - as do lots of teens. She becomes obsessed with certain pop stars, personalities (I think I did at her age too though). This is normal behaviour for a creative, quirky teenager, but she is excessive with it.

    Another thing is her lack of measure as she will talk openly and loudly about her ADHD, sexuality, body functions etc - maybe trying to shock or get a reaction? Also lies and "fake news". Another difference that I see between her and her peers is an immaturity that is difficult to put my finger on. There is a lot of black and white, she either hates or loves someone, nothing in between. Thankfully things have improved significantly this year in the 6th form post diagnosis. She now has a tight group of friends but it has taken a long time for her to see where she fits in and to see that she has self worth.

    I do now think that my daughter has PDA and ADHD as it fits so well and explains so much. I understand now that her behaviour could be anxiety related.

    IF she does have PDA is seeking a diagnosis likely to be helpful? She did seem shocked once when I suggested that our family has some autistic traits (her cousin has non verbal autism). I wonder if this could harm her fragile self esteem which has improved so much since her ADHD diagnosis. She's happy with that. I did read about a teenager who committed suicide after being diagnosed with an ASD and this horrifies me - this is my main worry actually. This is a quandry and I don't know what to do for the best. I may be overthinking things, but to me PDA fits. She's leaving home for Uni soon, maybe I shouldn't rock the boat.

    Sorry about the rambling, if you got thought this any advice would be great, thank you.
  • Holly59
    Posts: 2,189

    bexter said:

    My 17 year old daughter has always been difficult: stroppy and oppositional. She flies off the handle and we walk on eggshells - she is chatty and charming one minute and swearing and hurtful the next. She used to spit at me when she was little, have meltdowns, would lie and worryingly in her early teens steal things (which has stopped). We did have limited success with star charts when she was 4 or 5 years old. She would daydream at school, her primary school teacher called her a "loner", She is intelligent but would often scribble in her books and didn't care.

    In the past she has found it so difficult to keep friends, and she didn't "get" the playtime rules, the others would tell her she wasn't wanted, this was awful for her. At the age of 16 things were brought to a head and she told us she felt sad and out of control. We sought and received private ADHD diagnosis at her request due to her frustration at er inability to focus She tested very strongly ADHD, and she is now medicated as and when needed. She seems much happier in herself as she understands that she is not "naughty" or "stupid", but that her brain works differently. She no longer seems down and has counselling. She is a lovely, caring, attractive, extremely creative young woman who can be very engaging and charming, chatty - sometimes too talkative IMO. We do love her to bits, but at home she can be sweet and loving but also can be horrific, swearing, rude, aggressive etc (typical teenager some might say, but on the extreme side). Only when asked to do something or challenged. We try to be firm, it's easy to let her stomp off and leave her alone.

    So I read about PDA- and this is what struck me about some other things that she does:

    She literally retreats into a fantasy world reading and writing fantasy stories - writing books of them. I don't mind her doing that actually. She loves all the geeky fantasy type stuff of Dr Who, Harry Potter and Fan Fiction forums - as do lots of teens. She becomes obsessed with certain pop stars, personalities (I think I did at her age too though). This is normal behaviour for a creative, quirky teenager, but she is excessive with it.

    Another thing is her lack of measure as she will talk openly and loudly about her ADHD, sexuality, body functions etc - maybe trying to shock or get a reaction? Also lies and "fake news". Another difference that I see between her and her peers is an immaturity that is difficult to put my finger on. There is a lot of black and white, she either hates or loves someone, nothing in between. Thankfully things have improved significantly this year in the 6th form post diagnosis. She now has a tight group of friends but it has taken a long time for her to see where she fits in and to see that she has self worth.

    I do now think that my daughter has PDA and ADHD as it fits so well and explains so much. I understand now that her behaviour could be anxiety related.

    IF she does have PDA is seeking a diagnosis likely to be helpful? She did seem shocked once when I suggested that our family has some autistic traits (her cousin has non verbal autism). I wonder if this could harm her fragile self esteem which has improved so much since her ADHD diagnosis. She's happy with that. I did read about a teenager who committed suicide after being diagnosed with an ASD and this horrifies me - this is my main worry actually. This is a quandry and I don't know what to do for the best. I may be overthinking things, but to me PDA fits. She's leaving home for Uni soon, maybe I shouldn't rock the boat.

    Sorry about the rambling, if you got thought this any advice would be great, thank you.



    Hi ,
    Welcome to the Forum ,

    You have done an amazing job to get this far with the issues your daughter presents . Once she reaches 18 you will have no imput into the situation .

    Personally I would say " Yes " to the diagnosis but that would be her choice , you can't make her do something she does not agree with .

    PDA Stratagies are completly different to normal Autism Stratagies and this would affect her Course,Work at Uni . Examinations are one of the biggest issues for PDAers . A lot of Students struggle with Halls of Residence ,too noisy , too busy even with the support of mentors .

    My youngest has just started an undergraduate Course at College and what we have done is reduce the anxiety as much as possible to help him . Think totally outside the box .

    If she attends a Scottish Universirty she will not need a formal diagnosis of PDA for the Stratagies to be used .

    Can I suggest you contact Help4Psychology , it's one of the four recommended PDA assesment sites the PDA Society recommend . They have a pre assesment at £95 this would give you an indication for further assesment . You can do this over Skype . The full assesment is roughly £1999.

    If your area diagnoses PDA then get your GP to do a referral .

    You really need to get the DSA spot on first time around . My sons has been a nightmare and is still ongoing and not sorted yet . He is the first PDAer at College and it's been a steep learning curve all around . He has a ADD diagnosis , did have ADHD when young , this was made at 18', and just been diagnosed with Hypermobility . The Aspergers diagnosis started at 17 and it's still ongoing . We do not have a formal diagnosis of PDA but thats work in progress .

    You also have to think about getting her the correct support because issues like severe anxiety , depression , Psychosis , PTSD occur if the correct Stratagies are not used . I have a 21 year old on benefits for this very reason . He was expected to attend Uni . It's going to take years to undo the damage of mis diagnosis .

    You also must be aware these young people can lie and wrongly accuse others . This is another reason why it would be beneficial to find out for definite if she has PDA .

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

    What you don't want is for her not to cope and then drop out of University , it can be a downward spiral .

    It's the first time in his life that my youngest son has been really happy . It's not easy but the rewards are huge . We had a mum a few months ago report her son was doing extremly well at University and in a positive relationship . She pulled him out of school at 16 and home schooled him .

    https://m.youtube.com/watch?v=9exqlS1gsS4

    Harry's YouTube videos will help , someone of her own age .



    Hope this helps .
    Pat xx



  • bexter
    Posts: 2
    Thank you Pat, I think you are right (not what I wanted to hear though) - and yes it has been a struggle at times, many car crash play dates, knowing she knew she was left out of parties and sleepovers (I would feel that as a physical pain). I can see that you have had a nightmarish tough time and I appreciate your advice and experience.

    I can see potential for problems for the future away from home as she finds it so hard to stay organised, is so messy and she doesn't like intrusive noise which will make halls hellish - she already has her eye on a studio flat in the second year (unusual forward planning for her :) and uses earphones and earplugs at night already - I will get her an alarm for deaf people as she doesn't hear hers. The Unis seem to be supportive of ADD and ASD. She gets on with other creative types so I do believe she will make friends on her course, but she will not get on with random flatmates and she takes rejection very badly. I do worry about her being too open, vulnerable to abuse, potential to get into trouble, and managing finances (joint account may be a good idea). She was fine on a teambuilding residential away recently and loved it, making long term friends, so maybe she'll be OK with support. There are no exams on her intended uni course (it's all arty course work), but she will need to turn up and engage and will need support, with anxiety, maybe friendships, organisation, procrastination and reality.

    She can and does co-operate and take direction, accept help and god forbid, constructive criticism or suggestions (when she's in a good mood) from us at times. She sees flaws, inappropriate behaviour in other people, but either doesn't or won't admit her own, she understands sarcasm and metaphor and facial expressions. There must be a sliding scale for PDA (if she has it)and she's not at the severe end of it.

    My problem is that she actually thinks there is no problem apart from ADHD, We are her greatest bugbear at the moment and she won't engage with us at all about things she avoids or behavioural problems. The ADHD medication and counselling really has helped and she feels much better as she can focus when she needs to. She definitely doesn't associate herself with Autism as she has only ever seen the classic severe side of it. She craves friendship, fun and social interaction, so long as she has her own space to retreat to - so this must be different from the usual High functioning autism/aspergers.

    I think the first step is to speak to my husband, look at the options and those able to understand/diagnose it, I will speak to the psychologist that we saw originally who specialises in ASD And ADHD. One psychologist I spoke to on the phone originally did seize upon the "fantasy" stuff, as if it was meaningful and at the time I shrugged it off as unimportant and we saw someone else. It was stumbling upon a newspaper article that mentioned PDA recently and looking it up that that has made this fall into place.

    Interesting about the hypermobility as both my kids have hypermobile joints, both have had MRI scans and physio for that reason. My younger daughter has a few classic Aspergic traits, but is co-operative, popular, happy and has no social problems.

    Once I'm armed with facts and the process I will ask a professional for the best way to approach the subject as they will have come across this before.

    Thank you for your advice, that's made my mind up
  • Holly59
    Posts: 2,189

    bexter said:

    Thank you Pat, I think you are right (not what I wanted to hear though) - and yes it has been a struggle at times, many car crash play dates, knowing she knew she was left out of parties and sleepovers (I would feel that as a physical pain). I can see that you have had a nightmarish tough time and I appreciate your advice and experience.

    I can see potential for problems for the future away from home as she finds it so hard to stay organised, is so messy and she doesn't like intrusive noise which will make halls hellish - she already has her eye on a studio flat in the second year (unusual forward planning for her :) and uses earphones and earplugs at night already - I will get her an alarm for deaf people as she doesn't hear hers. The Unis seem to be supportive of ADD and ASD. She gets on with other creative types so I do believe she will make friends on her course, but she will not get on with random flatmates and she takes rejection very badly. I do worry about her being too open, vulnerable to abuse, potential to get into trouble, and managing finances (joint account may be a good idea). She was fine on a teambuilding residential away recently and loved it, making long term friends, so maybe she'll be OK with support. There are no exams on her intended uni course (it's all arty course work), but she will need to turn up and engage and will need support, with anxiety, maybe friendships, organisation, procrastination and reality.

    She can and does co-operate and take direction, accept help and god forbid, constructive criticism or suggestions (when she's in a good mood) from us at times. She sees flaws, inappropriate behaviour in other people, but either doesn't or won't admit her own, she understands sarcasm and metaphor and facial expressions. There must be a sliding scale for PDA (if she has it)and she's not at the severe end of it.

    My problem is that she actually thinks there is no problem apart from ADHD, We are her greatest bugbear at the moment and she won't engage with us at all about things she avoids or behavioural problems. The ADHD medication and counselling really has helped and she feels much better as she can focus when she needs to. She definitely doesn't associate herself with Autism as she has only ever seen the classic severe side of it. She craves friendship, fun and social interaction, so long as she has her own space to retreat to - so this must be different from the usual High functioning autism/aspergers.

    I think the first step is to speak to my husband, look at the options and those able to understand/diagnose it, I will speak to the psychologist that we saw originally who specialises in ASD And ADHD. One psychologist I spoke to on the phone originally did seize upon the "fantasy" stuff, as if it was meaningful and at the time I shrugged it off as unimportant and we saw someone else. It was stumbling upon a newspaper article that mentioned PDA recently and looking it up that that has made this fall into place.

    Interesting about the hypermobility as both my kids have hypermobile joints, both have had MRI scans and physio for that reason. My younger daughter has a few classic Aspergic traits, but is co-operative, popular, happy and has no social problems.

    Once I'm armed with facts and the process I will ask a professional for the best way to approach the subject as they will have come across this before.

    Thank you for your advice, that's made my mind up



    Hi,
    The Hypermobility was noticed on his 2 week check up as weak muscle tone but never followed through , we have had dislocated joints in his hands , bearing in mind he plays a musical instrument , every joint in his body is affected . We are trying all different techniques to help. Just bought an electric blanket and it's made a huge difference pain wise , another issue to add to the sleep issues . I could write a PHD on sleep or lack of. He often survives on two to three hours sleep . My two don't like talking about PDA but accept they have it and this is why they have had issues .

    My eldest son works in a University and Student Support are normally very accommodating to helping students on the Spectrum or any disability for that matter . One of his friends walked out of school at 17 due to bullying and Uni spotted the potential and accepted him on the exams grades he had . It's not always the brightest straight A* pupils they take . Medicine for example . They require people who listen , observe and can communicate with their patients . Mega important .

    Don't forget the questionairre for PDA was done some years ago and there has been research since that supersedes some of the information . Not all are violent . My youngest was " full on " from the start . It was put down to a variety of utter tosh , being polite here , such as blonde hair blue eyes , it's a boys thing , naughty twos , " e" in food , he will grow out of it , settle down , picky eater , so many missed opportunities . The other was a delightful child , subtle clues like hiding car keys , my gentle giant became the Incredible Hulk . I just could not understand the behaviour . CAMHS were useless .

    You are very observant ! May be the other child is on the Spectrum too . I know one guy who you would never believe was on the Spectrum , life and soul of the party.

    After my experience of the system that how the Scottish Petition to Parliament evolved . The final report will be posted tomorrow . I have seen a preview today .

    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    You should be very proud of what you have all achieved . The key is a good support framework and the willingness to tweak as you go along . You always need a Plan ABC and be 10 steps ahead .

    Take care

    Patxx

  • What you can explain to your daughter, is that ADHD is another neurodevelopmental/neurobehavioural condition the same as ASD-PDA is. So she wouldn't be getting a diagnosis a million miles apart from that which she already has. Up to 80% of autistics also have ADHD and they are genetically related, so there is a high chance she does have an ASD. From what you describe it could well be PDA.

    At the age of 17yo you won't be able to make her have an assessment if she doesn't want it though. Even though she's not yet 18yo, professionals start pushing parents out of a child's life once they are considered Gillick competent and most certainly by the age of 16yo. It's ridiculous but that's how they are. They are considered to have their own mind and rights. As a parent you become a spare part and your opinion counts for less and less the older the child gets. Never mind that you are their parent, will always be a massive and permanent part of their life and they are still looking to you for guidance and support.

    As for whether she would find the diagnosis helpful, it's only by people getting diagnosed that increased recognition of PDA will be spread. There is on this website the AET DfE endorsed educational support guidance document and PDA strategies which you and she will feel able to use without wondering if it's the right thing or not. Any professional she comes into contact with that needs to know of her PDA profile will then know and be able to look into supporting her the right way.

    Dr Judy Eaton at Help for Psychology told me that PDA individuals can have a maturity (socially, emotionally) as little as half their chronological age. So no matter how high their IQ is they are extremely vulnerable and people can be very fooled about their vulnerability because they are great mimics and can appear so plausible and sensible as a result. An ADHD diagnosis alone won't alert professionals as to her vulnerability, or at least the full extent of it. Should any situation arise where you need to take control of her issues such as PIP/DLA, EHCP, monetary, health, or anything else, it will be refused and she could be put at risk. At least with the right diagnoses, you can make a case for why she needs you to be in parental authority on particular matters to keep her safe.

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