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pda and misdiagnosis
  • i have a son who has just been dianosed sa having pda, he was playing up dreadfully, he was very violent to all family members and diagnosed with autism then the authorities decided that his bad behaviour was due to bad treatment and abuse at home because he was curling up at school weeing on floor etc and saying silly things had happenned to him and no one knew he had pda until he was taken into care and a pshycologist in another town diagnosed it , he also said i had done things to my daughter , now both kids in care and me i am sat here realised that due to misdiagnosis i now have no children, i tried telling people how bad things were at home for us but cause my son said it was me he got believed and i didnt ,proffesionals said i made it up but they aint saying that now they are looking after him, but believed his storys at the time, just said his behaviour wasnt all autism, how right they were but they never found out what it was until after taking kids off me
  • :cry: Reading your message I felt both Sad and angry. Whilst I'm sure these authorities have a difficult time in ensuring that childrens welfare is maintained it is a shame that no one listened to you before. Taking the children away from you must have had a devastating impact on them too. Are they taking steps to get them back to you now?
    I must confess that when I was first approached by my sons school to refer to the Child development centre I said no because I thought that they would start to critisise me and doubt me as a good mum and get other agencies involved. As it turned out we did go and it wasn't like that at all.
    I really hope that this situation gets sorted out for you and you get your family back and can start to help your son.
    Best wishes Donna
  • my house was like a war zone and when i tried to tell the powers that be they said i was manipulating people to believe what i wanted them to ,they put his bad behaviour down to the way i was treating him and said i was making it up and the local school said he was displaying all the symptoms of abused child, situation under review at the moment, not offered any real help whatsoever
  • MHO
    Posts: 111
    I was shocked to read your story. How did the "authorities" get involved? Did you appeal to social services for help, or did the school contact them? How old are your children? If the situation is under review, it may well be that the children will be restored to your care and that you will then get the help you so badly need. Are the children in residential care now, or are they with foster parents? It's so tragic that the diagnosis came too late to prevent your children from being removed from your care. Be strong, and trust that if your conscience is clear and you know you have not abused your children then they will be restored to you in due course and you can all begin a new life together, this time with appropriate help and support. Good luck!
  • yes i am 100% certain that i have not done anything to hurt my children,and hopefully all will be revealed in good time , the powers that be were supposedly going to help me on a volountry basis but then when they realised how bad my sons behavour was they decided there was more to it than i was saying and the local doctors said the same when you take your child to see a pshycologist you expect that person to make the right diagnosis and to give help and support
  • webbwebb
    Posts: 2,569
    Hi, I am so so sorry to hear that your children are not with you at the moment, I will be hoping and praying that the situation will be sorted out soon and that they will be returned to you quickly. I also hope that the authorities have the sense to give you plenty of help when your children are returned.
    Just wanted to say that I work on a National Helpline and in the last 3 years (out of hundreds of calls) I have spoken to 3 other mums in the same situation as you. I say this only to confirm that through incorrect diagnosis the authorities have been far too quick to judge parents incorrectly.
    You must feel very angry and bitter at the authorities and quite rightly so. I do hope things get sorted quickly and then you and your children can start looking forward together.
    Take Care, we are here if you need to talk.
  • I feel so shocked and angry at the way you have been treated. It must be appalling for you and I cannot find the words to convey how much I feel for you.

    My daughter was diagnosed with PDA yesterday, and I was really worried that I would be accused of being a bad mother (even though I know I not) and that something catastrophic would happen.

    My heart goes out to you and I dearly hope that you are reunited with your children very soon.
  • thanks for the replies offering support, i posted this to let others know what has happened to me as it could happen to anyone and i wondered if anyone else had experienced the same sort of thing happen to them, also it would be interesting to know if so if the people concerned got there children back, no matter how much i protested that i done nothing wrong i got told that my son wouldnt be saying these things for no reason , and got asked point blank do u expect us to believe he is making things up to which i replied i dont expect u to believe anything but i am telling the truth, and i dont know why he is saying them, i got told he was showing all the signs of a very badly abused little boy , no one would listen to me
  • Jac
    Posts: 16
    Hi my advice would be to contact Ian Josephs.
    He may be able to help you.

    Good luck.
  • thanks jac that was a very usefull link ive been hours reading it and most of what is said in it is correct,lies are told by social workers just to win in court,it was certainly so in my case and i am totally disgusted with how my family have been treated,many thanks
  • Lixina
    Posts: 289
    That website has a lot of misinformation in it. For example:

    There are of course parents who brutalise and even torture or kill their children but such parents rarely go to court to recover their children; they stay as far away from courts as they possibly can!

    That's not true. Plenty of abusive parents do try hard to keep custody of their children, either because they actually do love their children and either don't realize they're hurting the kids or don't think they'll do it again; or because they feel they have the right to do whatever they want to their children without anyone interfering.
    According to Lundy Bancroft (in the book When Dad Hurts Mom), abusive fathers are more likely than non-abusive fathers to seek custody during divorce. Not exactly the same situation, but the same kind of parent who seeks custody during divorce is likely to also fight for custody when social services gets involved.
    I agree that children being taken at birth for risk of emotional abuse sounds pretty excessive, but stereotypes about abusive parents harm those children being abused by parents who don't fit the stereotypes.
    As for their advice on dealing with social services - I think it's far too adversarial. Remember that these people are, for the most part, trying to do their job and protect children. Sometimes they make mistakes, sometimes they are prejudiced, but it's far from easy work and they can only ensure that children are safe if they have all the information.
    treehacker, if you are in fact wrongfully accused, I hope you do manage to get custody back. But to be blunt, I don't know if you are an abuser or not. Everyone else seems to have jumped to conclusions about this, but I won't. I was sexually abused, I know what abusers are like, and while some abusers have fairly obvious problems, others are 'pillars of the community', and there are also people with problems common among abusers but who are not themselves abusive. If you have actually abused your children, I hope you admit it and get help, rather than deny it.
  • Garden
    Posts: 329
    I did have a look at that site - as someone who has adopted two children I was interested to see what it says. I am surprised that it is allowed to operate, given that it recommends that when you know a child is being abused, you shouldn't tell Social Services.

    I thought that everyone has an obligation to put the needs and safety of children first?

    I understand that the issue of adoption is a very contentious one, particularly in relation to birth parents with special needs of whatever type. Undoubtedly a lot of the children who are adopted in this country come from families who cannot meet their needs - they may not torture and abuse their children, but instead they may neglect them, put them in dangerous situations, fail to stimulate them, scare them......... Our girls nearly died as a result of their early life experiences. Social Services tried very hard to reunite the family but things just went from bad to worse.

    The point is that you can love your children very much while unable to parent them. In this country, the US and Canada, society's solution is to have these children adopted into more stable families. They don't do this in other countries to much extent - that's why people from e.g. France tend to adopt from the Far East. I think that in other countries they tend to still have orphanages, or rely on the community more (extended families etc), but of course you do have the situation of neglected children on the streets in many countries.

    The paediatrician who diagnosed PDAS in our daughter thought that PDAS was endemic in the adopted population and thought that it was a genetic inheritance from the birth parents, which explains why they are unable to care for their children (not saying this applies to all PDAS families, just talking about the adopted population in particular). It also explains why they tend to come from pretty chaotic backgrounds - she said that it is something that has affected these families sometimes for generations.

    How many of us think our children will make effective parents? I know that my PDAS daughter could 'pass' for being okay and could meet someone and have children, and then the whole cycle may start over again. My daughters' birth mother has four children and only one of them seems to have PDAS, but she can't care for any of them.

    I am absolutely not questionning any individual's ability to parent their children, particularly the parents on these boards, who are clearly resourceful people trying to do their best for their children. The paediatrician also thought that some children enter the care system due to their PDAS, which goes undiagnosed and the difficulties in the family are all put down to the parents' inability to parent. It was actually from dealing with kids coming into care that this paediatrician had come across PDAS in the first place. Unfortunately, of course, PDAS is not well understood and often disregarded, so these kids end up in care, maybe even adopted.

    So we all have a job to do to educate professionals about PDAS so that children are never removed just because they have undiagnosed PDAS and despairing parents are not able to handle them. I can totally relate to this, given the way my PDAS daughter can scream the place down when she is in a state. However, in cases where the parents have PDAS and are unable to parent their children, what do you do? At the end of the day, the safety of the children is the most important thing. My girls would have died if they hadn't been removed - one was already grey when they took her away. Social Services tried to be kind and returned the older children to their birth mother - within weeks they were back in foster care, where they have since remained.

    I would be interested to hear what other people think.
  • Amanda
    Posts: 281
    OO...Its a difficult one this isn't it. I think it is often the easy option to blame the parent and their parenting skills before looking for other reasons, especially when its the firstborn who is the problem. I'm convinced that I'd have had to fight harder to get a diagnosis for Mark had Gemma not been so grounded and happy and 'normal'. Maybe thats not neccessarily a bad thing though. I'll be honest. I have met young people who have parents who have alcohol problems for example, who often present at times with a high degree not only of demand avoidance but also almost obsessional needs for control. These young people dont have PDA but have almost developed sonme of the characteristics as a way of coping with the neglect that they experience. I have no doubt also that in many of these cases the parent has no idea that they arent parenting effectively, in fact many of them seem to think that because they shower their youngsters with money and possessions they are fullfilling their parental duties, when of course we all know that there is much more to it than that.

    The paediatrician also thought that some children enter the care system due to their PDAS, which goes undiagnosed and the difficulties in the family are all put down to the parents' inability to parent. It was actually from dealing with kids coming into care that this paediatrician had come across PDAS in the first place. Unfortunately, of course, PDAS is not well understood and often disregarded, so these kids end up in care, maybe even adopted.

    I totally agree and I know there have been times when I've thought about throwing in the towel and if I am totally honest I can think of one occasion when Social services's reluctance to come in and take my children when I begged them was the only thing that kept my family together. Parenting any child is hard. You only have to stand in the school yard and hear parents of neurotypical children pulling their hair out and wailing about how hard things get, throw in something like PDA and even the best days are challenging by other peoples standards. I think often the bulk of the damage is done by so called 'do gooders' who stereotype parenting and who think all behaviours can be 'cured' by a few visits to the naughty step or a surestart course or two. We train parents to believe there is one way to be a good parent and anything else is failure. We live in a world where asking for help is seen as a weakness instead of the strength it most definitely is.
    In my experience Social Services don't make a habit of stepping in and breaking up a family unless there is no alternative. I do however believe strongly that in some of the cases where this happens, especially those where a parent of a child with symptoms of PDA for example has given up their parental rights could have been prevented with earlier intervention, better, realistic, honest advice and support for parents and a respite service that provides regular support to families in need of it the most, those with challenging children whos behaviours have a profound impact on the whole family. Sometimes the biggest help would be the opportunity for a good nights sleep to recharge batteries and find the energy to fight on. This applies to schools too. Without the right training on the conditions we live with and deal with it's all too easy to think that because a behaviour isn't evident in the confines of a classroom then obviously the parent is failing somewhere and the school succeeding.

    I have looked at the link posted above with the guy who is passionate about the failings of social services and their power trip. It has too many snippets of comments and quotes for my liking. Yes, sometimes they get it wrong and of course sadly there are consequences for the family when this happens. I've met some really pathetic social workers in my time, but Ive also met some wonderful people whos hands are tied so tightly in the ropes of beauacracy and red tape , preventing them from offering services that are so desperately needed. My own social worker took early retirement because he could no longer put up with it.
    Its not a job I would envy. If they take the children too soon, before something goes wrong there will be a public outcry, if they hold back and a child is harmed as a consequence again there's a public outcry and while I agree in an ideal world mistakes shouldn't be made, which is the better option?
    As the manager of a charity supporting parents of ASD children I am obliged to abide by the child protection policies we have set up. I do so willingly. You're right Garden, we do all have an obligation to put the needs and safety of children first. This has to be a rule written in stone.
    I just wish that each referral, each phonecall from a tired desperate parent, each cry for help could be not only acknowledged but actioned and a package of support put into place to support both the parent and the child. Im not talking about taking the child away, Im talking about helping the parent prioritise, building on their self esteem, offering them practical help when they need it most and reminding them how much they achieve.

    Our children aren't born with a parenting manual stuck to their bottoms, as parents we learn from the people around us, the other parents and our own families. When our 'special' children come along those people often back away and those who stay often are so rigid in their thoughts and expectations that they blame us for the challenges our children present. So where do we learn from? For me I learned from my own mistakes. It was hard and the lessons I learned and the scars that I accumilated along the way will be with me for the rest of my life.
    Parenting is not a skill we are born with, its something we learn. Where are the teachers for parents like me when I was learning about my challenging child. I don't remember the teachers, but the examiners I will never forget.
  • Lixina
    Posts: 289

    Garden said:

    The paediatrician who diagnosed PDAS in our daughter thought that PDAS was endemic in the adopted population and thought that it was a genetic inheritance from the birth parents, which explains why they are unable to care for their children (not saying this applies to all PDAS families, just talking about the adopted population in particular). It also explains why they tend to come from pretty chaotic backgrounds - she said that it is something that has affected these families sometimes for generations.

    As a PDA person I find that comment troubling. One thing is that a lot of abused people can have demand avoidance and need for control for reasons unrelated to any neurodevelopmental difference.
    If a parent has their kids taken away because of PDA I think that's very sad. I know many higher functioning autistics have self-care and organizational problems that without proper support can result in neglecting children (as well as themselves), but the solution to that is greater support, not taking children away. For PDAers, and to a lesser extent most disabled people, support that comes with strings attached such as 'we decide what you need, not you' and 'do what we say' is likely to be rejected, which can seem like we're not cooperating with attempts to help us - but if the help offered was less demeaning and more respectful, we'd accept it. (This is another 'canary in the coal mine' issue where PDAers just have a more severe reaction to something that harms all recipients of such assistance.)
    Chronically being misunderstood and treated as bad can cause serious problems, because many people treated that way decide 'if I can't be good, I'll be bad'. This is probably why untreated ADHD often results in conduct disorder and related conditions, and PDA people are probably equally at risk. What is needed in that case is recognition of the underlying condition and for the person to be clearly told that being hyperactive/distractible/impulsive (in ADHD) or oppositional (in PDA) doesn't mean they are bad, just means they are different.
  • Garden
    Posts: 329

    What you say goes to the heart of some of the debate around taking children into care. Whose needs get prioritised? Those of the parents or those of the children?

    It is all very well to say that parents with special needs should have more support, but in practical terms, there are always going to be long periods when the parents are alone with the children, and that's the difficulty, as neglectful parenting has a huge effect on a child's development. It actually affects the developing brain, so it's not just a case of forgetting your early experiences and settling down in foster care - you are left with a dysfunctional brain which impacts your ability to self regulate, plan and organise, process emotional experiences etc etc. It is because of our daughter's early experiences that the child psychotherapist now thinks that she has the 'As If' personality type.

    In our girls' case, the birth family went into a residential unit with social workers available 24 hours per day to teach the birth parents how to parent effectively - and the birth parents did not respond and the report on this stay (which lasted for months) documents multiple examples of child neglect even while the social workers were there. At the end of the day, should the children suffer in order to preserve the rights of the parents? There is always going to a limit as to what help and support social services can give to any given family. You are always at some point going to have to close the door on the family and leave them to it. You cannot make someone feed their children three times a day unless you are there in the house with them. For whatever reason the UK has decided to prioritise the rights of the children. I understand that many people disagree with this approach and feel that the rights of parents are being undermined. Personally, I think that the UK takes the right approach.
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