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Formal assessment in two days!
  • Our daughter, is being formally assessed for ASD on sat. we are terrified.
    my partner has repeatedly asked for help since she was 5 months old. to no avail.
    we have spent the last 6 years, watching her daughter, now 9 implode.
    we have been referred to CAMHS on 9 separate occasions with not even an assessment, social services involvement, repeatedly, accused of everything, MBP, emotional abuse, apparently she doesn't display any behaviour at school, so we are and have been apparently asking for help and lying about her.
    we have been preparing for the assessment but today found PDA!
    we always felt that an ASD diagnosis wasn't quite right, or ODD, or ADHD, but by god she meets every single aspect of everything I have read so far, except one.
    so much now makes sense.
    But what do we do at the assessment, as we have despite it being untrue, been accused of trying to self diagnose.
  • Holly59
    Posts: 2,586

    jackson9818 said:

    Our daughter, is being formally assessed for ASD on sat. we are terrified.
    my partner has repeatedly asked for help since she was 5 months old. to no avail.
    we have spent the last 6 years, watching her daughter, now 9 implode.
    we have been referred to CAMHS on 9 separate occasions with not even an assessment, social services involvement, repeatedly, accused of everything, MBP, emotional abuse, apparently she doesn't display any behaviour at school, so we are and have been apparently asking for help and lying about her.
    we have been preparing for the assessment but today found PDA!
    we always felt that an ASD diagnosis wasn't quite right, or ODD, or ADHD, but by god she meets every single aspect of everything I have read so far, except one.
    so much now makes sense.
    But what do we do at the assessment, as we have despite it being untrue, been accused of trying to self diagnose.



    Welcome and join the list of failure to recognise!!
    Don't panic. It's a bit late to get a Clinicians guide in the post but you could download the information or suggest the staff at CAMHS look at the information for professionals on this site.

    http://www.pdasociety.org.uk/professionals

    http://www.jkp.com/understanding-pathological-demand-avoidance-syndrome-in-children.html
    If you could get a copy of this tomorrow it's great. Loads of information in this.

    My boys were not diagnosed with Asbergers till 17 and 18. Had to battle to get a diagnosis of ADHD when young then ADD now for the youngest . Now battling for PDA diagnosis.
    Also suggest you look at the info sheets on PlanetAutisms blog. They are brilliant.

    http://evolutian.wixsite.com/planetautism/infofactsheets


    The reason this behaviour does not exist in school is called masking, a info sheet explains that, I like so many others have had the same battle with schools.

    It also gives information about being accused of abuse and wrong diagnosis eg attachment disorder.

    You could also suggest they watch this video which is brilliant. Most important statement , listen to parents. Tell the CAMHS these folks are WORLD LEADERS in their field .

    http://network.autism.org.uk/knowledge/insight-opinion/pathological-demand-avoidance-interview-ruth-fidler-and-phil-christie
    You might land up like us picking away at the clues to get an answer . If they bothered to follow the NICE guidelines you would have had your answer years ago.

    Most important is family history co morbid issues , my mistake did not look at bigger picture. Who has epilepsy, dyspraxia , dyslexia, Dyscalculia, Tourette's , bi polar. Any other family members with Asbergers, ADHD , ADD ? Go back to grandparents both sides.

    You then split the issues , lots overlap. I have just been diagnosed with Myres Irlen Syndrome associated with dyslexia , never knew that existed till a few weeks ago. Since the boys have been diagnosed I recognised I had dyslexia, dyspraxia, Dyscalculia , ADD , now Myers Irlen Syndrome.

    Guess who recognised all the issues me. CAMHS recognised 1 out of 6. Adult mental health services diagnosed another 3 , now battling the PDA.

    What was the issue you did not recognise? Does your daughter have eating, sleeping issues ? How is her co ordination? Does she have speech problems.

    There are parents sessions run by the PDA society and others, it's worth looking at the list to see if there are any near you.

    http://www.pdasociety.org.uk/blog/2016/08/pda-society-training-courses-for-2016
  • RhanHRhanH
    Posts: 1,108
    Hi and welcome to the forum. We personally found implying we didn't know much about PDA and asking for a professional opinion worked wonders in acknowledgement of the condition within our daughter. Then we asked for diagnosis. You will be hard pressed to find someone who will officially diagnose PDA out right but in reality ASD with a profile of PDA or ASD with PDA behaviours will help get an EHCP underway and ensure an appropriate teaching approach is taken.

    The clinicians guide Holly mentioned is a great publication and certainly worth trying to print and maybe highlighting the masking elements too.

    Remember it can be a long road but as parents we know our children the best so keep pushing for the answers your daughter deserves. Will be thinking of you on Saturday. Xxx
  • Holly59
    Posts: 2,586

    RhanH said:

    Hi and welcome to the forum. We personally found implying we didn't know much about PDA and asking for a professional opinion worked wonders in acknowledgement of the condition within our daughter. Then we asked for diagnosis. You will be hard pressed to find someone who will officially diagnose PDA out right but in reality ASD with a profile of PDA or ASD with PDA behaviours will help get an EHCP underway and ensure an appropriate teaching approach is taken.

    The clinicians guide Holly mentioned is a great publication and certainly worth trying to print and maybe highlighting the masking elements too.

    Remember it can be a long road but as parents we know our children the best so keep pushing for the answers your daughter deserves. Will be thinking of you on Saturday. Xxx



    http://www.pdasociety.org.uk/resources/external-links/blogsandfacebookgroups
    Also a group of support groups on Facebook , local groups.

    I found when I did my DSA for my youngest son I kept referring to the clinicians guide and using the word professional . " You will understand being a professional" worked a treat. The guide explains the difference even CAMHS staff should understand.

    Have all your information ready, have they got the school reports because there will be clues in those if they look carefully.

    https://www.change.org/p/alistair-burt-mp-nhs-social-services-understand-parents-of-autism-pda-pathological-demand-avoidance

    This ladies story is so very much like yours and so many others . There is a Petition at the end to try and get Parliament to officially recognise PDA. It would be great if you could sign it and ask your friends to do the same.

    Good luck for Saturday , I am sure you will be fine xx
  • jackson9818 so sorry you have been through the false accusations and NHS failures situation, there are a lot of autism families out there who have been through this. When the dust has settled and you have the outcome, you could consider raising formal complaints if it's not too late. They shouldn't be allowed to get away with it. There are plenty of relevant fact sheets to your situation on the link I've just given.

    (BTW - PDA is an ASD subtype)

    Is this a private assessment? I assume so as it's on a Saturday. Don't worry about the professional assuming anything, they will go by your daughter's presentation and history. I would make a little report of what traits she matches on this website and use examples of incidents to explain it. In the few days you have left, you could keep a daily journal of incidents and what PDA techniques you used and what helped. Some written notes will be vital, so you need to focus and read up a bit and show what's relevant to the clinician. I would contact the clinician (email/fax for speed) and state that you have discovered PDA and you hope s/he is familiar with it as it will need to be considered as part of the assessment.
  • Holly59
    Posts: 2,586
    Sorry PlanetAutism I was going to bed early and I am still up. Not posting anything else till I get my new glasses or it's before lunch when the eyesight is mediocre not dire. Tried to be a clever clogs and do two things together .

    http://evolutian.wixsite.com/planetautism/infofactsheets

    Fixed now.

    Don't even ask why I am still up. Remember choose your battles carefully.Boys are helping friends mend computers over Skype. What is he suppose to be doing , getting organised for College tomorrow .sorting paperwork for it. No doubt when he realises at the last minute what he has not organised that will be my fault as well. The joys of PDA!!

    Have told the youngest not to leave me at TrafficLights in Edinburgh tomorrow, don't want any more 80 year olds helping me accross the road again.Hope this Spotify app thing is easy to learn so I can keep myself entertained on the bus tomorrow.
    Someone asked the other day did I have messenger , just found it but no clue how it works. They are showing me allegedly. Might even get a Facebook Page with the new glasses. See you don't need Botox, face lifts , just a Myres Irlen test and new glasses with fancy lenses to help this age issue.. Less painful apart from the price

    .
  • I would just like to say thank you for your help, we have been searching and reading manically for the last few weeks, thank you to RahnH and to "holly" and "planet autism" for the links and the info sheet and to all for the support. We knew she was "masking" at school. but didn't have a clue what to call it. in fact I'm positive and have been saying for the last two years to the schools that they are missing subtle behaviour, but as "professionals" they always know better. Hmm professional, that's a term overused by some.

    Yes it is a private assessment, via a referral from CAMHS, as apparently they cannot take any more cases on "they underestimated the numbers of referrals they felt they would receive, when they took on the contract"

    In answer to your questions, she didn't appear to have any speech delay, yes huge problems with eating since a baby, and sleep would be nice.

    we have already made numerous formal complaints, I have no idea why some organisations have a complaints process. lots of brick walls but we keep fighting.

    I started the little report, its 9 pages! and we have her medical records and can show that her behaviour has been a concern since around 5 months, even have a letter from a play therapist when she was around 3, with reference her behaviour and the fact our daughter would not enter into role play with her!

    our only concern there is we have been accused of self diagnosing, which we have never done, always only said she displays this, and that's similar to symptoms of that, but accused none the less. All we have ever asked for is an assessment.

    counting down the hours.


  • There is no such thing as self-diagnosing. A lay person cannot diagnose so it's an entire misnomer. And a pathetic parent blame label by avoidant professionals.

    I assume you have seen the fact sheets on my website, there is one about why professionals must listen to parents about autism because they are the first often to notice the signs! Another fact sheet there about the entrenched parent blame culture. They really should hang their heads in shame. But it's all about avoiding providing resources in many cases. Money does make the world go round.
  • yes I fully agree, they cant provide the resources and then take any means to avoid offering a service that's supposed to be freely available.
    Yes I have seen the fact sheets and printed those that are relevant. thanks again.
  • You're welcome.
  • Holly59
    Posts: 2,586




    PlanetAutism said:

    There is no such thing as self-diagnosing. A lay person cannot diagnose so it's an entire misnomer. And a pathetic parent blame label by avoidant professionals.

    I assume you have seen the fact sheets on my website, there is one about why professionals must listen to parents about autism because they are the first often to notice the signs! Another fact sheet there about the entrenched parent blame culture. They really should hang their heads in shame. But it's all about avoiding providing resources in many cases. Money does make the world go round. [/quote

    Just given College tutor loads more information, I have told him about PlanetAutisms info sheets , he has loads of info from PDA Society, another book, more reports, just hope he is not overloaded with information. He is an amazing guy and so willing to learn. An absolute delight .

    Good luck for tomorrow. That's great that you have a Private Appointment. xxxxx


  • KazK
    Posts: 255
    Good lick x
  • Holly59
    Posts: 2,586

    jackson9818 said:

    I would just like to say thank you for your help, we have been searching and reading manically for the last few weeks, thank you to RahnH and to "holly" and "planet autism" for the links and the info sheet and to all for the support. We knew she was "masking" at school. but didn't have a clue what to call it. in fact I'm positive and have been saying for the last two years to the schools that they are missing subtle behaviour, but as "professionals" they always know better. Hmm professional, that's a term overused by some.

    Yes it is a private assessment, via a referral from CAMHS, as apparently they cannot take any more cases on "they underestimated the numbers of referrals they felt they would receive, when they took on the contract"

    In answer to your questions, she didn't appear to have any speech delay, yes huge problems with eating since a baby, and sleep would be nice.

    we have already made numerous formal complaints, I have no idea why some organisations have a complaints process. lots of brick walls but we keep fighting.

    I started the little report, its 9 pages! and we have her medical records and can show that her behaviour has been a concern since around 5 months, even have a letter from a play therapist when she was around 3, with reference her behaviour and the fact our daughter would not enter into role play with her!

    our only concern there is we have been accused of self diagnosing, which we have never done, always only said she displays this, and that's similar to symptoms of that, but accused none the less. All we have ever asked for is an assessment.

    counting down the hours.



    http://network.autism.org.uk/knowledge/insight-opinion/understanding-and-managing-eating-issues-autism-spectrum

    A lot of folks on the Sectrum have sleep issues, my youngest included sleep depravation. Eating , one hardly eats the other at times goes from not eating to eating too much.
    These are Autism Issues, it's splitting up what's relevant and where it fits in.

    http://www.pdasociety.org.uk//forum#/discussion/4995/lighting-bedtime-

    http://network.autism.org.uk/sites/default/files/ckfinder/files/Eating issues Dr gould.pdf

    Sorry for the late response , I had one poorly yesterday , think it might have been a bug, the other I had to take to Edinburgh .

    Hope this helps .xxxxxxx
  • Would just like to say thanks you all for your help an d advise, but I now officially give up.
    apparently they only went by the ADOS test and she did not score enough to be regarded as autistic. they were pretty much not interested in anything we wanted to say, just what they wanted to ask, didn't even read out 14 pages of behaviour that she displays, paid no attention to the numerous referrals, paid no attention to any of the behaviour we know she displays at school and can prove, didn't want to view the video clips we have of her. and as for PDA, "its not a recognised diagnosis" and their opinion is that it wouldn't be worth even pursuing that because its not officially recognised, and does not appear in either the DSM or ICD.
    its taken 6 years of struggle, fighting and all the accusations, fighting schools, and everyone else. and now they are going to refer it back to CAMHS for further investigation, because our daughter admitted being violent and destroying the house etc, for and she was smiling when she told them. oh and if she can behave at school then that's her true self and she must be therefore able to do it at home.

    we know what CAMHS will say..... parenting.
  • You could report the lead clinician for negligence. Point out the UK's leading autism charity has a web page on PDA and it is diagnosed as an ASD subtype therefore comes under NHS NICE! Ask how other children in the UK have PDA diagnoses!

    The ADOS-2 is researched to be only 77% clinically reliable in high-functioning autistics, most likely less so in females and even less so in PDA.

    There is most likely research out there on the best clinical tools for assessing for PDA. Double-check what's on this website about diagnosis.

    If you are prepared to travel (and pay), there is a private company called The Learning and Assessment Centre in Horsham, Sussex http://www.lanc.org.uk/ who can prove with a qEEG what is going on in your daughter's brain, for around £350. It shows the patterns of connections and activity and helps enormously with diagnosis. They don't to my knowledge specifically test for PDA but they do test for autism spectrum and ADHD and it will show she is on the spectrum.

    Don't be beaten, please. We are warrior parents, we have to fight very hard for our children because of the failings out there in the NHS. Feel free to name and shame also: http://evolutian.wixsite.com/planetautism/name-shame-em

    Your daughter is worth more than you giving up, I know it's a true trial of mettle and is utterly soul-destroying and exhausting, but giving up doesn't help your daughter. See my web page for reasons (scroll down at will!) for reasons why a diagnosis is so important for her: http://evolutian.wixsite.com/planetautism/your-autism-rights

    You do have options. Contact your MP, write a formal complaint to the head of CAMHS, report the assessing doctor to the GMC (but after diagnosis is achieved will be better evidence), or sue for clinical negligence!

    Ignoring parental evidence is diabolical. Parents are experts in their own children and to entirely disregard your painstakingly collated evidence is disgusting. It is your daughter's developmental history!
  • There are other clinical tools and for starters it says in NHS NICE not to rely on scoring of tests for diagnosis and the author of ADOS-2 stated this too. There is the DISCO, CHAT (toddlers) and maybe more. The ADOS-2 is not the be all and end all.

    Your experience is similar to what happened with my eldest (Asperger's). CAMHS relied on the ADOS-2 and she just missed the cut-off. They rushed the (admittedly shortened version) of the ADI-R and completely ignored all the written parental evidence I had sent before the assessment. So they did not diagnose her. I pushed for a 2nd opinion out-of-area and she was diagnosed. Albeit misdiagnosed with PDD Other rather than Asperger's due to CAMHS sending their erroneous opinion to the clinic (so a completely non-independent 2nd opinion!), so professional bias and not biting the hand that fed meant they relied on that hence the misdiagnosis. At least it was an ASD diagnosis, but one that completely undermines how severely affected she is.
  • Holly59
    Posts: 2,586

    jackson9818 said:

    Would just like to say thanks you all for your help an d advise, but I now officially give up.
    apparently they only went by the ADOS test and she did not score enough to be regarded as autistic. they were pretty much not interested in anything we wanted to say, just what they wanted to ask, didn't even read out 14 pages of behaviour that she displays, paid no attention to the numerous referrals, paid no attention to any of the behaviour we know she displays at school and can prove, didn't want to view the video clips we have of her. and as for PDA, "its not a recognised diagnosis" and their opinion is that it wouldn't be worth even pursuing that because its not officially recognised, and does not appear in either the DSM or ICD.
    its taken 6 years of struggle, fighting and all the accusations, fighting schools, and everyone else. and now they are going to refer it back to CAMHS for further investigation, because our daughter admitted being violent and destroying the house etc, for and she was smiling when she told them. oh and if she can behave at school then that's her true self and she must be therefore able to do it at home.

    we know what CAMHS will say..... parenting.



    Totally agree with PlanetAutism contact your MSP and put a formal Complaint into the Head of Mental Health Services with a Copy to CAMHS in your area. It's totally unacceptable that they have not read or listened to blatant evidence of AS /PDA. Keep both a diary and video evidence , keep collecting more evidence .
  • webbwebb
    Posts: 2,558
    Hi jackson9818

    it sounds to me like CAMHS referred your daughter to a very sub-standard Private diagnostic Centre ???
    It seems the professionals at the centre did not allow enough time to carry out a full assessment, to read all the evidence and listen to your concerns?

    The contract between CAMHS and the Private Centre is obviously of a very low monetary value!!!

    Children can't grow out of ASD or PDA it is a life long disorder, so please don't give up trying to get the right diagnosis and educational support for your daughter. She will need all the help and support you can give her and all the support from Health and Education Services to help her achieve her full potential.

    Keep trying the Behaviour/management Strategies on the website for children who may have PDA to see if they reduce your childs anxiety and controlling behaviour.
    Keep reading about PDA ie books, website etc to understand the condition and understand your daughter.
    Many children with PDA do not score highly enough on the ADOS assessment to be given a diagnosis of ASD - This is because they have PDA and it takes a Specialist Professional to diagnose PDA.

  • Holly59
    Posts: 2,586
    http://www.youngminds.org.uk/for_children_young_people/unhappy_with_treatment/how_to_complain

    Dependening on the Quality of your MSP this should help.
    I have personally spoken to the Head of our Mental Health Services but unfortunately he only found pitiful excuses for poor quality care .
    My GP now forgets accepted procedure in out case and contacts him direct. He has over ruled a Consutants decision after numerous mistakes and gave permission to prescribe a drug. I am hoping he listens to facts again and gives us our PDA diagnosis.
    I know how disappointed you are but don't accept this diagnosis. Using inferior quality companies is not the answer to reduce waiting lists. It only increases them . To be honest I was surprised you had been referred to a Private Company, our NHS sidelined children through Children's Integrated Services . I absolute shudder after meeting some of the staff from this unit locally.
    Keep strong, collate additional evidence. Keep asking questions and advise , we will all help you Xxx
  • Holly59
    Posts: 2,586

    jackson9818 said:

    Would just like to say thanks you all for your help an d advise, but I now officially give up.
    apparently they only went by the ADOS test and she did not score enough to be regarded as autistic. they were pretty much not interested in anything we wanted to say, just what they wanted to ask, didn't even read out 14 pages of behaviour that she displays, paid no attention to the numerous referrals, paid no attention to any of the behaviour we know she displays at school and can prove, didn't want to view the video clips we have of her. and as for PDA, "its not a recognised diagnosis" and their opinion is that it wouldn't be worth even pursuing that because its not officially recognised, and does not appear in either the DSM or ICD.
    its taken 6 years of struggle, fighting and all the accusations, fighting schools, and everyone else. and now they are going to refer it back to CAMHS for further investigation, because our daughter admitted being violent and destroying the house etc, for and she was smiling when she told them. oh and if she can behave at school then that's her true self and she must be therefore able to do it at home.

    we know what CAMHS will say..... parenting.



    https://pdaguidance.wordpress.com/2016/02/11/campaigning-for-pda-awarness/

    There are some template letters on this link which should help.
  • Hey...bit of a newbie and just reading through the timeline of forums to find my feet, and to add tools to my "educating pros as a parent" toolkit....I he if there was any sort of development to your situation my love? I ask mainly to get an idea of how far/education the "system" has come since this discussion originated in 2016? ....I'm at the squirrel stage myself, applying the "gather all relevance, educate the ignorance and exercise my perfected skill of resilliance" approach...then making it annoyingly apparent to them, I am also rather good at "defence against the dark arts" (I will "yeah... but, your not getting my point, I'll start from the beginning with a different approach and slower"my way through any sort of stuck mindset dribble)......anyway.....that reference is actually quite a helpful way to remind you that that's basically what this is about, building our defence against our individual "dark arts". Regardless of region or situation, we all have the stubborn obstacle, taking various forms...just ensure your toolkit is full and your defence is impenetrable!....anyway, motivationals aside, an update would be amazing! I do hope you have moved forward and can be a beacon of hope for those struggling through situations/journeys similar to your own, maybe opening up dialogue and knowledge
  • RhanHRhanH
    Posts: 1,108
    Hi Mummymcfarlane, I've sent you a private message - check out the messages tab in the banner at the top of the page.

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