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6 months waiting to see CAMHS then 6 months of 'relaxation excersises' and that's it???
  • churnymum
    Posts: 15
    Well she's shut up in her room after screaming 'I hate you I hate you' at me again. This time for quietly suggesting she get dressed. It will be the same when I suggest she brushes her hair, eats breakfast, leave the house etc. etc. On schooldays we have strategies that generally work and get her motivated but it's a lot of hard work and takes a long time. Weekends are still pretty hellish though, which is very stressful for all parties. Holidays are inconceivable. The school was helpful, particularly after a long bout of her refusing to go in, the Ed Psych they brought in recommended the 'Mental Health route' and we were referred to CAMHS. 6 months later we started seeing a clinical psychologist. I had film of behaviour and wrote a long letter describing why we were worried, (extreme anxiety, volatility, defiance, sensory issues etc etc) they have emailed us some relaxation exercises and suggested some 'strategies to try at home', we had already worked out better ones (with a lot of help from this website and it's links) and that's it! Psych says they don't diagnose PDA in this region, there has been no form of assessment at all, one more meeting with her, and she's going to put us on the waiting list for 'Community OT' whatever that is. So that's it, the extent of the professional help that we waited so long for. We are at our wits end, every day is a total struggle, so where do we go from here? Do I write to CAMHS and say no, that's not good enough? What would be the point? I'm starting to think they don't believe me, there's a very real sense that they just want shot of us, appointments have been getting further and further apart, and further and further away, I'm having to take time off work and her out of school to talk over "possible strategies to try at home" - and that's all they ever do! Should I ask for an out of region referral? If so to where? Is there actually any real help out there? We are in the Scottish Borders and could never afford to go private. I want to fight for her to get the help she needs but I'm banging my head against a brick wall here.
  • Holly59
    Posts: 2,586

    churnymum said:

    Well she's shut up in her room after screaming 'I hate you I hate you' at me again. This time for quietly suggesting she get dressed. It will be the same when I suggest she brushes her hair, eats breakfast, leave the house etc. etc. On schooldays we have strategies that generally work and get her motivated but it's a lot of hard work and takes a long time. Weekends are still pretty hellish though, which is very stressful for all parties. Holidays are inconceivable. The school was helpful, particularly after a long bout of her refusing to go in, the Ed Psych they brought in recommended the 'Mental Health route' and we were referred to CAMHS. 6 months later we started seeing a clinical psychologist. I had film of behaviour and wrote a long letter describing why we were worried, (extreme anxiety, volatility, defiance, sensory issues etc etc) they have emailed us some relaxation exercises and suggested some 'strategies to try at home', we had already worked out better ones (with a lot of help from this website and it's links) and that's it! Psych says they don't diagnose PDA in this region, there has been no form of assessment at all, one more meeting with her, and she's going to put us on the waiting list for 'Community OT' whatever that is. So that's it, the extent of the professional help that we waited so long for. We are at our wits end, every day is a total struggle, so where do we go from here? Do I write to CAMHS and say no, that's not good enough? What would be the point? I'm starting to think they don't believe me, there's a very real sense that they just want shot of us, appointments have been getting further and further apart, and further and further away, I'm having to take time off work and her out of school to talk over "possible strategies to try at home" - and that's all they ever do! Should I ask for an out of region referral? If so to where? Is there actually any real help out there? We are in the Scottish Borders and could never afford to go private. I want to fight for her to get the help she needs but I'm banging my head against a brick wall here.



    I live in the Scottish Borders near Kelso.

    Mary Black from Chirnside and myself have petitioned the Scottish Parliament to spread awareness, and to get PDA formally recognised and diagnosed .

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

    No doubt you have been seen by the infamous Andrew Lang CAMHS.

    http://www.zeemaps.com/view?group=1665768&x=-1.363501&y=53.432604&z=13

    Mary and I have just started a specific PDA Support Group.

    http://www.childreninscotland.org.uk/training-and-events/understanding-pathological-demand-avoidance-pda-syndrome-in-children-1

    There is a training day in Glasgow soon.

    http://www.childreninscotland.org.uk/training-and-events/understanding-pathological-demand-avoidance-pda-syndrome-in-children-1

    There is also an webinar, two part run by the PDA Society soon.

    We can help you in the mean time . You will Refused an out of area referral. The wording in my letter was " PDA is highly controversial" .

    You do NOT need a diagnosis to get support in Scotland under the Additional Support for Learning Act .

    If this is what you have been told they have broken Education Laws .

    Join the list of total failures in the Scottish Borders .

    We can help you, who to contact , what to do next .




    Pat xx
  • PDA_ASD_Parent
    Posts: 4,188
    Just to add to what Pat has said, I know Pat has previously said there are a couple of areas of Scotland that do recognise and diagnose PDA, so you could try, if Scotland has the same mechanism as England, asking your GP to complete an Independent Funding Request for out-of-area and arm yourself with the rationale, including video evidence, daily journal of examples and the clinician's booklet from this website to back you up. Alternatively (or alongside battling the NHS route) go onto the http://turn2us.org.uk/ website and search for a charity that can fund private assessments.

    What I would say is, that it might be an idea to make a formal request via your GP for an ASD assessment without specifying PDA at this stage. Your child clearly needs an adequate assessment urgently and many children start off with an ASD diagnosis and you can try to get the PDA sub-type refined later. An autism diagnosis will open doors that even if they shouldn't be, are likely to be shut at the moment.
  • churnymum
    Posts: 15
    Thanks PlanetAutism, I'm feeling very low at the moment, all our experience at CAMHS has done for us is make me feel like it must be all my fault as a bad parent. In my naivety I had assumed that CAMHS would at least be considering some kind of assessment - I assumed they would have the expertise to know what kind of assessment would be appropriate - 6 months later there has been no assessment of any kind, nothing! Do I have to go back to my GP now? The fact that we will have been effectively discharged from CAMHS is not likely to run in our favour I would have thought? Who would do a ASD assessment if not them anyway?
  • PDA_ASD_Parent
    Posts: 4,188
    The parent blame culture is common across the whole UK, it's sickening. You are doing great and don't let anyone tell you otherwise. Any parent who seeks help on forums, who takes their child for therapy is a good parent. CAMHS are notorious for blaming parents. Even if it's not openly said, there are likely to be not-so-subtle questions and comments that make it obvious. Questions about the child's environment or how you are dealing with their behaviour, telling you to go on parenting courses or to try different techniques. It's smoke and mirrors. If a child is in difficulty and has extreme behaviours then the underlying cause has to be looked at, not just telling you how to handle it differently. By telling you to handle it differently, they are effectively saying it's down to you. That's negligent of them. Often what happens is, if you don't ask you don't get. So unless you make a formal request for an assessment, a parent is just taking their child to CAMHS hoping that an ethical and expert practitioner will say "Ah yes, clearly this child shows signs of x, y, z, so let's arrange a formal assessment asap." Rarely does this seem to happen. They gate-keep their resources and fob you off with insinuation it's your fault to allow them to continue to avoid providing resources. CAMHS often also are clueless about about autism so it can be staring them in the face and they still don't recognise it, especially in girls.

    Yes it should be CAMHS who do an ASD assessment, if it's not too late I would reply firmly saying you want an ASD assessment, otherwise you will need to go back to your GP. But if you do so, make it clear to your GP that CAMHS have been unhelpful and that s/he may need to consider other clinics if CAMHS bat you away. Complete the extreme demand avoidance questionnaire from this website, score it and use it as part of your PDA evidence.
  • Holly59
    Posts: 2,586

    churnymum said:

    Thanks PlanetAutism, I'm feeling very low at the moment, all our experience at CAMHS has done for us is make me feel like it must be all my fault as a bad parent. In my naivety I had assumed that CAMHS would at least be considering some kind of assessment - I assumed they would have the expertise to know what kind of assessment would be appropriate - 6 months later there has been no assessment of any kind, nothing! Do I have to go back to my GP now? The fact that we will have been effectively discharged from CAMHS is not likely to run in our favour I would have thought? Who would do a ASD assessment if not them anyway?



    You won't be offered an out of area referral . Mary has been refused an out referral twice . She has a report from Stayley Hall School which states Hannah has Autism Spectrum and PDA . Andrew Lang and Borders General rejected the evidence .Mary took the report to Borders General after waiting ages to see someone and the Paediatrician took one look at the report and said " Hannah was not Autistic.

    Between Mary and I we have seen 4 paediatricians at BGH , not one spotted Autism Spectrum issues. I was told for 8 years my eldest had PTSD.

    The new Head of Borders General was the previous guy in charge of Mental Health.

    They have now sent a Psychologist to Phil Christie for training . Mary has been offered a few hours at Duns Community Centre with a newly trained PDA teacher , that's it apart from Horse Riding in the middle of no where up at Ashkirk.

    Between my two boys and Hannah , Andrew Lang CAMHS only recognised the youngest Aspbergers . They took so long , nearly a year , cancellations and insisted they did a classroom assesment , add on Rector " No " , who insisted I needed a diagnosis, which you don't , the sleep deprivation went off scale .. He never returned to school.

    We can help you get the support you need . You need to fight but it can be done .

    The Borders has an appaling lack of understanding of Autism Spectrum .

    We have seven cases in Kelso at present . Two where you live, there are a few in Jedburgh, Eyemouth and Hawick . There will be more , but it's getting the awareness out there.

    The normal answer is Parenting Classes . A Community OT is a Community Occupational Therapist . Hmm, that's a new one . Must be running out of ideas where to fob off to.


    Pat xx





  • Holly59
    Posts: 2,586
    Yorkhill will diagnose , FAST team at Fife, certain places in East Lanarkshire , certain CAMHS in Aberdeen .

    I have heard of a Consultant who will give a diagnosis for Adults up in Edinburgh but have been refused referral.

    It's very patchy . There is a specialistPaed unit at Walkergate Newcastle upon Tyne as well but because of the ignorance of PDA you won't get a referral.

    There are ways around it, you need your MSP involved. I can tell you which ones NOT to go to or in your case there is a very good local Councillor.

    It's absolute madness. Paula Webb one of the trustees, one of her sons has PDA, it's written on all of his reports, lives in the Nottingham area where PDA was first recognised but can't get a formal diagnosis in her area of Nottingham.

    She has given me permission to put this in the response to Scottish Ministers . She told us at the Barrhead training day last year.

    As Planetautism has stated you need to go back to your GP. Mary can tell you which is the best one at your surgery who to see.

    I can give your loads of information, Enquire Brochures , books all sorts , if you want to borrow some .

    The positive news is that you have recognised the issues before the High School.

    Pat xx
  • churnymum
    Posts: 15
    Honestly, I really did think that once we finally got to to CAMHS it would be a question of "an ethical and expert practitioner will say "Ah yes, clearly this child shows signs of x, y, z, so let's arrange a formal assessment asap." That's probably why I feel so let down now. At the end of the day, I'm not an expert, I know there's something going on, it could be an ASD, could be PDA or something totally different that I've never heard of. If I push for an ASD assessment what will happen? The psych from Andrew Lang has already told me they don't diagnose PDA, does anyone have any experience of kids being assessed for ASDs at Andrew Lang? They had originally put her on the waiting list for OT there, I had hoped that there would be a diagnostic element to that but they have now downgraded her to 'community OT', which all sounds a bit like playing with bean bags. But it sounds like from what Pat is saying that going through the GBH (BGH) would be a waste of time(!)
  • Holly59
    Posts: 2,586

    Holly59 said:

    Yorkhill will diagnose , FAST team at


    churnymum said:

    Honestly, I really did think that once we finally got to to CAMHS it would be a question of "an ethical and expert practitioner will say "Ah yes, clearly this child shows signs of x, y, z, so let's arrange a formal assessment asap." That's probably why I feel so let down now. At the end of the day, I'm not an expert, I know there's something going on, it could be an ASD, could be PDA or something totally different that I've never heard of. If I push for an ASD assessment what will happen? The psych from Andrew Lang has already told me they don't diagnose PDA, does anyone have any experience of kids being assessed for ASDs at Andrew Lang? They had originally put her on the waiting list for OT there, I had hoped that there would be a diagnostic element to that but they have now downgraded her to 'community OT', which all sounds a bit like playing with bean bags. But it sounds like from what Pat is saying that going through the GBH (BGH) would be a waste of time(!)



    http://evolutian.wixsite.com/planetautism/name-shame-em

    Suprising what happened after myself and another mum put ourcdetails on PlanetAutisms name and shame page.

    I have just PM you some information . I will get the GP name from Mary for you. There is one who has a better understanding . It's a shame you are not in my Surgery. I have trained by GP in PDA .!!

    One of the other mums involved in the Kelso cases was back and forward and got nowhere like you. She was helping me photocopy and was reading the Questionnaire, that's how that case was found .

    My GP has complained about the endemic failure to recognise and diagnose at Andrew Lang . He alone has three cases at present where they present with blatent Aspbergers but Andrew Lang have failed to recognise .

    Mary's GP has put in two formal complaints .

    Plan A , GP armed with additional info.

    Go to school and request an assesment of her needs . You can ask as a Parent .

    Get Councillor, MSP involved, Show then this site , the Petition to Parliament. The NAS recognise PDA.

    Get in touch with Enquire at Edinburgh.

    http://enquire.org.uk/


    http://www.bordersadvocacy.org.uk/

    Very good for support.

    http://www.autism.org.uk/about/in-education/extra-help-in-school/scotland/individual-plans.aspx

    You need minimum a proper IEP . Then work on a CSP . This is a legal document and must be correct.

    If she in her final year at Primary there must be a formal transition between Primary and High School , then High School to College .

    Keep a record of everything . Phone calls , paperwork , ask for everything in writing .

    The school will have a Complaints System, letter in writing to Rector with a copy to school Govenors will start the process . You could always add a Copy to Head of SBC Education Department for your area .

    https://www.scotborders.gov.uk/info/20041/support_for_pupils/456/additional_support/3

    The information is on this link . The main contact is Dr Barrow who is the Head Educational Psychologist at SBC . Will PM you about him.

    Pat xx

  • PDA_ASD_Parent
    Posts: 4,188
    Don't forget also churnymum that PDA is an ASD (autistic spectrum disorder) sub-type. Which is why, if all else fails on the PDA front for now, an ASD assessment is an important thing to pursue.
  • PDA_ASD_Parent
    Posts: 4,188
    This blog post is written by a NZ parent, but the system seems to be the same:

    "Psychological Damage Caused By Using Government Disability Support Services"

    https://autismandoughtisms.wordpress.com/2014/09/30/psychological-damage-to-mothers-caused-by-using-goverment-disability-support-services/

    What these people do to parents as well as children, is appalling. This is how damaging the parent blame culture is.
  • churnymum
    Posts: 15
    OK. I read all that. I'm going to go away and have a wee cry now. Then a google at all the references. I hope tonight I will be able to sleep a bit. I hope to be back with you all soon. Thankyou.
  • PDA_ASD_Parent
    Posts: 4,188
    Keep your chin up churnymum. There is an army of mums like you out there. You are not alone. Have a good cry for the release of pent up emotions but then, remember you are doing a great job and don't let them get you down. It all seems overwhelming right now, but you will get into the swing of it all. You're a Scots lass (I assume from your location!) and Scots are made of stern stuff! (*)
  • Holly59
    Posts: 2,586

    churnymum said:

    OK. I read all that. I'm going to go away and have a wee cry now. Then a google at all the references. I hope tonight I will be able to sleep a bit. I hope to be back with you all soon. Thankyou.
    [its so much to take in at once , an absolute rollercoaster . You have done an amazing job working the issues out . I found out about PDA the same way as you . Mary's original article about Hannah in the press was my first understanding of PDA . The Petition to Parliament has proved to us that this is working . It is spreading awareness and that's exactly what we wanted.

    There are so many kind genuine people out there who will help. Remember you are not alone anymore and everyone on this site will help you.

    Pat xx

  • churnymum
    Posts: 15
    Thank you so much for all your help and support, I suppose we just have to work our way through it. I'm going to write to the Psych from Andrew Lang and ask for a formal ASD assessment, stating my reasons at length (again) even though it sounds like that will probably be a complete waste of time, but hey ho, we'll see what happens and keep you posted.
  • Holly59
    Posts: 2,586

    churnymum said:

    Thank you so much for all your help and support, I suppose we just have to work our way through it. I'm going to write to the Psych from Andrew Lang and ask for a formal ASD assessment, stating my reasons at length (again) even though it sounds like that will probably be a complete waste of time, but hey ho, we'll see what happens and keep you posted.



    Hi,

    Have just met up with Mary this morning . Just found another absolute horror story of failure within Kelso Schools . Have given Mum my name and number and told her to come and see me .

    You need to go via your GP to get a referral. You also need the help and support of a local Councillor/ MSP because otherwise you will be ignored .

    I suggest you write ( or phone ) to the names I suggested . There is also the option of phoning BGH complaints department .

    Mary is due in a MAC meeting shortly so please by all means text her . She is such a kind lady and is desperate to help you .

    Don't try doing this alone . We will all help .

    Pat xx

  • PDA_ASD_Parent
    Posts: 4,188
    There is strength in numbers churnymum, might be a good idea to take up Pat's offer of help. A lone parent is always more vulnerable to rejection.
  • churnymum
    Posts: 15
    A wee update. I put my concerns in writing and emailed the Psch that CAMHS had sent us to, particularly mentioning that I was worried about future transition to HS, and hey presto! We are now on the apparently very lengthy waiting list for an Autism assessment and CAMHS OT. And we will be continuing to see the psych. We'll take it from here I suppose, just keep going through the process...
  • Holly59
    Posts: 2,586

    churnymum said:

    A wee update. I put my concerns in writing and emailed the Psch that CAMHS had sent us to, particularly mentioning that I was worried about future transition to HS, and hey presto! We are now on the apparently very lengthy waiting list for an Autism assessment and CAMHS OT. And we will be continuing to see the psych. We'll take it from here I suppose, just keep going through the process...



    Hi,

    Get your GP involved because the anxiety is off the scale. You do NOT need a diagnosis for support under the Additional Support for Learning Act . The school must use PDA Stratagies immediately .

    I have heard that one of the Ed Psy is off sick and she only works two day week. One mum has been cancelled time after time I know in the Duns area.

    At one stage they were so overwhelmed with referrals they were referring them to Children's Integrated Services .

    They have already wasted 6 months doing virtually nothing but fob you off . You should have an urgent referral .

    Pat xx

    http://www.zeemaps.com/view?group=1665768&x=-1.363501&y=53.432604&z=13

    We are always here to help just ask . We are in touch with a Northumberland Support Group who are now working with us . Northumberland mums are in the same predicament as us . Getting a diagnosis and the support required.

    http://www.pdasociety.org.uk/blog/2017/03/webinar-on-pda

    Have you watched the Webinar it's excellent . Also Harry's YouTube videos .














  • Update one year on. Hubby & I took herself out of school for the day yesterday to drive the two and a half hour round trip to CAMHS is Selkirk where we spent half an hour being cheerily informed that she doesn‘t have Autism. Of any kind. Which is good news. So the daily meltdowns before school, the panic attacks sitting in the car outside school, the daily hiding in the school toilets, so anxious that she‘s afraid she‘s going to vomit, the inability to leave the house/get dressed/brush her hair etc. at weekends, the obsessively repetetive watching of the same YouTube videos, the complete reliance on her one single friend, the rigid adherence to totally fixed routines, the myriad sensory issues, that‘s all just our bad parenting apparently. They did reassure me that most parents have anxieties about their kids transition to high school (due in 6 months) and that‘s perfectly normal. And maybe she‘ll be totally different in a new environment. And they asked her in front of me if she was looking forward to High School. Yes, she is, replies 11yo. Well there you go then. Must be all in my head after all. Then they tell me in front of her that I need to be more positive. Three years now of contact with CAMHS and all it‘s got us is some easily googlable relaxation exercises and a pervasive sense that it‘s all either in my head or my fault. In fact I would say that if anything we‘re worse off than we were before, because now when she has a panic attack/meltdown she rather aggressively blames me. After all, it must be all my fault. If I had just used the right strategies everything would be just fine. That‘s what we got from CAMHS. If there is anything positive I can take from this, it‘s that having now put us all through this I can be reassured that there was never any help to be got from them anyway and I can now stop going to totally useless and mind-numbingly patronising appointments.
  • Holly59
    Posts: 2,586

    churnymum said:

    Update one year on. Hubby & I took herself out of school for the day yesterday to drive the two and a half hour round trip to CAMHS is Selkirk where we spent half an hour being cheerily informed that she doesn‘t have Autism. Of any kind. Which is good news. So the daily meltdowns before school, the panic attacks sitting in the car outside school, the daily hiding in the school toilets, so anxious that she‘s afraid she‘s going to vomit, the inability to leave the house/get dressed/brush her hair etc. at weekends, the obsessively repetetive watching of the same YouTube videos, the complete reliance on her one single friend, the rigid adherence to totally fixed routines, the myriad sensory issues, that‘s all just our bad parenting apparently. They did reassure me that most parents have anxieties about their kids transition to high school (due in 6 months) and that‘s perfectly normal. And maybe she‘ll be totally different in a new environment. And they asked her in front of me if she was looking forward to High School. Yes, she is, replies 11yo. Well there you go then. Must be all in my head after all. Then they tell me in front of her that I need to be more positive. Three years now of contact with CAMHS and all it‘s got us is some easily googlable relaxation exercises and a pervasive sense that it‘s all either in my head or my fault. In fact I would say that if anything we‘re worse off than we were before, because now when she has a panic attack/meltdown she rather aggressively blames me. After all, it must be all my fault. If I had just used the right strategies everything would be just fine. That‘s what we got from CAMHS. If there is anything positive I can take from this, it‘s that having now put us all through this I can be reassured that there was never any help to be got from them anyway and I can now stop going to totally useless and mind-numbingly patronising appointments.



    Hi,

    So sorry to hear of your ongoing issues . If you believe your child has PDA that is all you need for the school to start using ASD-PDA Stratagies in Scotland .

    Under the Additional Support for Learning Act a formal diagnosis is NOT required . GIRFEC is exactly that . The Wellbeing Wheel where they have a duty to protect a child’s mental health and make them feel nurtured and well protected . That’s means using PDA Stratagies .

    That you can’t get mental health support from clueless Andrew Lang is another story . You will be refused an out of area referral too. This is in breech of basic human rights ,


    We now have the situation within the Borders that the Adult Services Learning Disability Team gave a young man an ASD-PDA Diagnosis last September , years of clueless Andrew Lang failure and ignoring mums concerns over the years , but as far as we are aware Adult Services and clueless CAMHS as yet don’t recognise ASD -PDA .

    You can either PM me

    or Get in contact with BANG at Galashiels , DONT go anywhere near the support group nearest to you , their behaviour was appaling towards me .

    http://www.bordersadditionalneeds.org/patron.asp

    BAAGS have just referred another case this week for us to support .BAAGS and BANG are working together . BANG has seen a huge increase in cases recently as the awareness grows .

    Please please get in touch . We have helped another parent in your locality too recently .

    High School will only make matters worse unless the correct Stratagies are used . More and more demands will be put upon her and she will start school refusing .

    These children “ mask”beautifully “ don’t they !

    I was at the Ruth Fidler Education Seminar in Edinburgh last week . What an amazing lady ! No suprise there was not one teacher from the Borders present , none there last year either !

    Are you aware that a teacher can refuse Autism Training in Scotland , which in itself breeches the Education Laws . In my opinion if a teacher refuses training they should be sacked .


    Pat xx
  • Thanks Pat, she's just about coping with Primary School, well, she's anxious all the time, calls school 'hellish', gets very angry and upset at us for 'forcing her to go', has to do 20 minutes or so of breathing exercises before she can get out of the car, but at least she is currently going. She only has another 4 months of Primary School left so it's probably too late to try to effect any change there. I am not at all optimistic about High School, I honestly can't even see her getting on the bus. (Despite CAMHS advice to me to "think more positively" - I am the one who has been driving her to school for the last seven years, I know what she goes through.) Our thinking at this time is to sell our house and businesses (we are both self-employed) and re-locate to a situation where we could home-educate if we need to. Honestly, I don't even want to try her at High School (Berwickshire) I think the experience would be unbearably traumatic for her. But I don't see that as pessimism, just realism.
  • Even before diagnosis, a classroom reorganisation so that the TA was one to one with my son instead of generally assigned to the class produced a major positive difference in 3 days. Not especially in school but in the level of difficulty of getting him to the door.
  • There used to be a TA at her school who had experience of dealing with anxiety in kids, she was brilliant. We discovered that if I drove right up to the school doors (once all the kids were in) and the TA came out to meet our daughter from the car then she would go in to school almost immediately, if a bit sullenly. (She is compulsively over-obedient about anything school-related, everything has to be done to the letter.) But a drop in school numbers and a subsequent drop in budget meant that the TA was let go, she's in another school now. There are no teachers available to meet the car at that time of the morning. The school secretary has helped even though it's not her job, but she's not in every day.
  • Holly59
    Posts: 2,586

    churnymum said:

    There used to be a TA at her school who had experience of dealing with anxiety in kids, she was brilliant. We discovered that if I drove right up to the school doors (once all the kids were in) and the TA came out to meet our daughter from the car then she would go in to school almost immediately, if a bit sullenly. (She is compulsively over-obedient about anything school-related, everything has to be done to the letter.) But a drop in school numbers and a subsequent drop in budget meant that the TA was let go, she's in another school now. There are no teachers available to meet the car at that time of the morning. The school secretary has helped even though it's not her job, but she's not in every day.



    Have PM you.

    Pat xx

  • churnymum said:

    Update one year on. Hubby & I took herself out of school for the day yesterday to drive the two and a half hour round trip to CAMHS is Selkirk where we spent half an hour being cheerily informed that she doesn‘t have Autism. Of any kind. Which is good news. So the daily meltdowns before school, the panic attacks sitting in the car outside school, the daily hiding in the school toilets, so anxious that she‘s afraid she‘s going to vomit, the inability to leave the house/get dressed/brush her hair etc. at weekends, the obsessively repetetive watching of the same YouTube videos, the complete reliance on her one single friend, the rigid adherence to totally fixed routines, the myriad sensory issues, that‘s all just our bad parenting apparently. They did reassure me that most parents have anxieties about their kids transition to high school (due in 6 months) and that‘s perfectly normal. And maybe she‘ll be totally different in a new environment. And they asked her in front of me if she was looking forward to High School. Yes, she is, replies 11yo. Well there you go then. Must be all in my head after all. Then they tell me in front of her that I need to be more positive. Three years now of contact with CAMHS and all it‘s got us is some easily googlable relaxation exercises and a pervasive sense that it‘s all either in my head or my fault. In fact I would say that if anything we‘re worse off than we were before, because now when she has a panic attack/meltdown she rather aggressively blames me. After all, it must be all my fault. If I had just used the right strategies everything would be just fine. That‘s what we got from CAMHS. If there is anything positive I can take from this, it‘s that having now put us all through this I can be reassured that there was never any help to be got from them anyway and I can now stop going to totally useless and mind-numbingly patronising appointments.



    Absolutely unacceptable how they have handled this. Your daughter demonstrates clear autistic spectrum and PDA features. For a clinician to undermine the parent in front of the child (or at all!) is appalling. These PDA children don't need any help in parent-blaming as they blame us for everything as it is and can be expert manipulators. So what this idiot has done is undermine your parental authority, made you look clueless and at fault in front of your child giving her ammunition to use PDA manipulation strategies.

    I would send an urgent letter telling them you are not happy with the lack of professionalism in undermining you that way, reminding them of their duty of care and querying how with (list) the ASD features your daughter displays they are so sure she is not on the autistic spectrum. If they didn't use the PDA screening questionnaire EDA-Q ask why not. Did they actually conduct a formal ASD assessment at all? If they did, if they used the ADOS-2 point out that it is only 77% clinically reliable in high-functioning autistics and likely even less so with females and those with PDA. Point out the DISCO identifies the PDA subtype better. If they didn't use any screening questionnaires for anxiety or depression query that too (e.g. http://www.corc.uk.net/outcome-experience-measures/revised-childrens-anxiety-and-depression-scale-and-subscales/). Formally request a 2nd opinion for a full ASD assessment to include PDA and differential screening. Tell them you do not appreciate their blatant parent-blaming attitude as this is not working in partnership with parents.

    These might be useful:

    http://evolutian.wixsite.com/planetautism/infofactsheets sheets nos 5 & 7 most especially.
  • June67
    Posts: 812
    The fact that she said she was looking forward to secondary school to the authority figure who asked her is also evidence of her anxiety she was too scared to say what she really feels or being autistic may not even be aware of how she feels. Our children often provide these intimidating authority figures with the answers they want to hear then moan about it afterwards to us. My eldest did this several times in his annual review this week when asked about joining some clubs both in and out of school and how he likes being on the school council; something that was foisted on him by his unknowing form tutor and has since expanded to include a role on the committee for unicef rights and responsibilities campaign. He hates it as it involves social interaction and arriving at school 30mins early for once or twice weekly meetings which for us is a huge challenge. Of course he didn't know how to say no or tell SENCO etc. that he hates it and feel anxious and under pressure about it...
    Keep pushing things with the school they are seeing some of her issues, even if she isn't autistic she's not behaving like a normal happy child of her age and the chumps should try to offer some help not just telling you it's your fault and leave you high and dry. Demand more from them if you can.
  • Yes, like when they're at school feeling really anxious or uncomfortable and an adult asks them if they are OK and they say yes. They can put on a persona in school and then give polite answers despite feeling really, really stressed.
  • Holly59
    Posts: 2,586

    churnymum said:

    Thanks Pat, she's just about coping with Primary School, well, she's anxious all the time, calls school 'hellish', gets very angry and upset at us for 'forcing her to go', has to do 20 minutes or so of breathing exercises before she can get out of the car, but at least she is currently going. She only has another 4 months of Primary School left so it's probably too late to try to effect any change there. I am not at all optimistic about High School, I honestly can't even see her getting on the bus. (Despite CAMHS advice to me to "think more positively" - I am the one who has been driving her to school for the last seven years, I know what she goes through.) Our thinking at this time is to sell our house and businesses (we are both self-employed) and re-locate to a situation where we could home-educate if we need to. Honestly, I don't even want to try her at High School (Berwickshire) I think the experience would be unbearably traumatic for her. But I don't see that as pessimism, just realism.



    Hi,
    It’s absolutly appaling that people are considering selling their home to relocate to get a basic education and an “accurate “ diagnosis effective for their child. I can understand your priority must be your child .

    Please consider going through Help4Psychology first , the £95 pre assesment would give you a simple statement stating that your daughter has PDA , this can be done over Skype .

    Keep fighting . I can help you . I am at a meeting next week giving a talk about Pathological Demand Avoidance to two influential groups within The Borders and there is an Awareness Day planned at SBC at the end of March .Honestly both BANG and BAAGS will support you properly .

    If you do decide to move , I hope you don’t , your main priority is an area with a CAMHS who has a good understanding of PDA and schools who have a good understanding of PDA .

    I know of a family who moved because of their issues with services and have moved to an area with a poor reputation for PDA and in my opinion it has been a total disaster . She has gone from the frying pan into the fire !

    I have helped a family where the child is now in full time education for the first time , another where the outcome now is totally different from what she had . The support group near you offered lip service only . That’s only two examples .

    Please consider getting in touch . We can support you .There are outreach services who can work with the family in Education at home . No one tells you ,it seems to me it’s when a family reaches crisis point that interventions occur .

    The long report I was reading yesterday from Scottish Ministers one Specialist School said exactly this . “ Why LA mess about for years then decide to try for a specialist placement , they have to undo years of mis management before they can start working with a child .

    I have had experience of both my boys with that . It’s gently gaining their confidence again .It can be done , done give up . Yes my boys say they are “ fine “ . PDAers has a PHD in Masking . You know underneath they are in turmoil .

    Don’t forget a formal diagnosis is NOT required in Scotland . As long as you a parent recognises your child has ASD - PDA that’s all you need initially . If they tell you otherwise they are in breech of Education Laws .

    Honestly that Andrew Lang CAMHS is an absolute disgrace . It’s not fit for purpose and needs an emergency team in ASAP who know understand Autism . They are absolutly clueless . My GP formally complained about the endemic failure to recognise and diagnose ASD . My opinion is “ Clueless and Crap “ . The only thing we did agree on was “ Why the youngest was never referred “.

    There is a huge momentum growing for massive change within the Scottish Borders . They have tried all ways to silence me , I have been bullied , verbally threatened , threatened with slander for telling the truth , doors slammed shut . I have already named and shamed in public at the Scottish Autism Stratagy Consultation Meeting and I have no hesitation to do the same again . I tell the truth where others have been totally dishonest .

    Change is inevitable and it’s not too late to help you and your family .

    Take care

    Pat xx

    PS

    Hope you have filled in the survey .

    https://www.pdasociety.org.uk/blog/2018/02/pda-society-survey

    My GP has completed one too , as a few other individuals in our case have done the same . It would certainly help if Andrew Lang would complete in your case but I wouldn’t hold my breath . It took three months to ring me back on one occasion , other times they just didn’t bother.

    PPS

    https://petition.parliament.uk/petitions/202680

    If you would consider signing and sharing this Petition too if you haven’t already done so. Thx
  • Please consider going through Help4Psychology first , the £95 pre assesment would give you a simple statement stating that your daughter has PDA , this can be done over Skype .



    Be aware though that they can't call it a diagnosis, only an indicator, as only a full assessment involving physically meeting the child can warrant a diagnosis.
  • Holly59
    Posts: 2,586

    Please consider going through Help4Psychology first , the £95 pre assesment would give you a simple statement stating that your daughter has PDA , this can be done over Skype .



    Be aware though that they can't call it a diagnosis, only an indicator, as only a full assessment involving physically meeting the child can warrant a diagnosis.


    Agree . This is why the PDA Society only recommend four centres at present because they have a full multidisciplinary team present .

    If Help4Psychology say don’t take it any further then you know your child does not have ASD-PDA . The cost cover all the assessments , there is a lot of work goes into the full written assesment too .

    Personally if I was going to Help4Psychology and could afford the extra few hundred pounds on top of the normal assesment fee for them to liaise with the LA it’s worth every penny .

    Pat xx
  • I think Help4Psychology do have the MD team as they have psychologists, OT and S&L (and a "MD team" in the NHS can literally just mean two people as it did for us, psychologist doing ADOS with the child and psychiatrist doing parental ADI-R interview and a very rushed one at that!): https://help4psychology.co.uk/ourteam.html but of course the Skype consultation would only be with the one person and acts as a screening. It's a really good idea because it's a very long way for some people to travel only to be told it's not PDA. Having said that, they will do a differential assessment so would pick up other ASDs, ADHD and potentially mental health difficulties as well. It's just that for a specific PDA assessment, if it's not that, anything else could have been assessed locally on the NHS and saved them the journey.
  • Holly59
    Posts: 2,586

    I think Help4Psychology do have the MD team as they have psychologists, OT and S&L (and a "MD team" in the NHS can literally just mean two people as it did for us, psychologist doing ADOS and psychiatrist doing parental ADI-R interview and a very rushed one at that!): https://help4psychology.co.uk/ourteam.html but of course the Skype consultation would only be with the one person and acts as a screening. It's a really good idea because it's a very long way for some people to travel only to be told it's not PDA. Having said that, they will do a differential assessment so would pick up other ASDs, ADHD and potentially mental health difficulties as well. I'ts just that for a specific PDA assessment, if it's not that, anything else could have been assessed locally on the NHS.



    I think it’s a brilliant idea working off Skype for the pre assesment . Yes it’s a full MD team .

    Unless a massive training package is put in place into our local CAMHS I have no hope whatsoever . One team has given a diagnosis in Adult Services , why can’t they be used as an emergency measure to assess other adults AND train in-house with CAMHS and normal Adult Services ?

    Saves fighting for an out of area referral , not that we were given that opportunity . It must be cost effective too.

    Pat xx
  • Holly59
    Posts: 2,586

    Yes, like when they're at school feeling really anxious or uncomfortable and an adult asks them if they are OK and they say yes. They can put on a persona in school and then give polite answers despite feeling really, really stressed.



    http://www.gov.scot/Publications/2017/12/7828/2

    7 Scottish Ministers have set the ambition that Scotland is the best place to grow up and bring up children. This ambition requires a positive culture towards children. One where children are welcomed and nurtured. One where we all are alert to their needs and look out for them. Where children are listened to, where their views are heard and their rights protected. They should be respected as people in their own right, with rights to a life that allows them to fulfil their potential.

    Not by my experience it’s not ! “ Ambitious “ is not the word I would use , “Miracle Required “ is more appropiate .

    Would certainly use these “ Laws “ as evidence . It’s a teachers responsibility to understand these Laws and how they should be implemented .

    Pat xx
  • This ambition requires a positive culture towards children. One where children are welcomed and nurtured. One where we all are alert to their needs and look out for them. Where children are listened to, where their views are heard and their rights protected. They should be respected as people in their own right, with rights to a life that allows them to fulfil their potential.



    And for all children this should also involve respecting and listening to their parents, as experts in their own children and who are not frivolous, but only requesting what their children need. Remembering also that children do not exist as an island, they are part of a family unit and that attacking their parent's parenting abilities and concerns is detrimental to the children. As are malicious and unwarranted social services referrals. Hurt the parents, hurt the children by default.

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