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Has my daughter got PDA?
  • Hello all.

    My 13 year old daughter has had "difficulties" since for ever and at times we have all found every day life very challenging. I have looked formally out for help since she was around 7-8 years old. We have finally made it to S-Cahms but I am afraid we are just going to be fobbed off by someone else. Having a chat with an expert in SEN and autism the other day PDA was mentioned and I found this website. I am still not 100% sure this is my daughter because some of the areas of the autism spectrum don't seem to fit. For example she was a very bright and articulate toddler, not passive. She however reached a plateau at around 7 ish and her school performance has been slightly worse year on year. I put this down to her extreme anxiety and emotional difficulties. She has always known the difference between fantasy and reality and never been obsessed by role play nor displayed inappropriate behaviour I see in other autistic children. I also thought she was too socially aware to be on the spectrum, but having read this website, the social aspects actually fit like a glove.

    Our main issue has always been a complete refusal to follow instructions or commands unless in her own terms and an anxiety driven need to be in control, sometimes being manipulative and having countless meltdowns. I always put it down to being a immature, stubborn and later, clearly by being overwhelmed by an anxiety that almost paralyses her. She also has numerous sensory issues, which may have motivated some of the early refusals to wear specific clothes, eat most things, hygiene etc. When I read the bit about "just please brush your teeth" I had tears in my eyes. There's other aspects I really recognise too, like speaking to me or other kids like if she was the adult. I put this down to being an only child and being surrounded by adults at home. There's always been lack of understanding of consequences, deferred gratification, perspective, etc in most issues but I also put this down to immaturity perhaps.

    She had "friendship" issues in school so she was part of SEAL programs and had counselling numerous times, but her behaviour was always better in school, although she would take it on me in the evenings. She is very polite and knows what to say to be let off these programs and she doesn't engage fully. When she was 8 we were referred to Families First. We were asked to go to parenting classes (never did) and got told about "broken record techniques" and reward charts. We explained these tools did not work with her because she didn't understand them but it was suggested "I wasn't being consistent enough or doing it properly". When she seemed to "improve" (didn't) we were discharged. We were referred to a nutritionist to teach us how to hide vegetables in a sauce, but again we declined. Without sounding too arrogant my husband and I are highly educated, we love food, and we have a very comfortable and stable home and there are no "social" problems, so we always thought this type of support wasn't for families like ours. However nothing changed and everyday slowly deteriorated until she hurt herself once and tried to hide it from teachers who alerted us. Then the ball started rolling again. I am cutting the story short though, there's been numerous visits to the GP etc in the meantime. We were referred to CAHMS and after weeks and months and assessments where we were fobbed off for answering yes to questions like" Can you look forward to fun activities" we ended up having "family therapy". She refused to attend, but my fear is that when she is assessed on her own she blames us for being "horrible" to her. In school every fallout was always blamed on other children (and the parents blamed us). These sessions were awful. The underlying subtle message I was getting was that perhaps: "we spent too long on social media" "weren't good enough role models for conflict resolution " "failed to give her a secure attachment when she was a baby (I was a SAHM!)" "my standards were too high and was expecting too much of her" (Categorically not true, in fact we have extremely low expectations because anything like" please have a bath" is a battle). The advice we got was that if she was upstairs and we said: "Dinner's ready" and she refused to come down until she wanted two hours later for crisps, a better way was to go and sit with her and asked her how she was feeling instead. If she refuses to do something no amount of pleading, bargaining, threatening, rewarding, explaining...works . Now we have been referred to an Occupational Therapist. Her answer to that dinner problem was: well don't buy crisps then.

    This is just a tiny snippet of a very long story of appointments, tears, tantrums and unhappiness. I have an appointment with this new OT soon and I am scared she wants to send us to a course to learn how to resolve conflict because our daughter "doesn't respect us". The horrendous implication is that we are bad parents that have failed to control her, or instil respect in her. However, she is a loving child we often cries "I don't want to be like this" My daughter has had once session with this OT and has missed the next and doesn't want to go back. I don's know if this is affecting her mental health too and now suffers from depression because she refuses to leave the house or do anything other than be on her phone. She says "you don't understand, I can't".

    I also want to add that she is funny, loving, intelligent, caring, and beautiful and that I love her more than anything in the world. But it's hard sometimes. I am sad that when she remembers me when she is old, she will mostly have memories of me saying: Why do you have to argue everything to death just DO IT!".
  • Rubytuesday
    Posts: 266
    Hi, I’m so sorry to hear about the difficult time you’re having. Many of your experiences sound very similar to those we’ve had with our daughter... She is now diagnosed with ASD and we’ve had a really difficult few years. Have you looked at the Help 4 Psychology website? They offer a free screening service which identifies possible features of ASD/PDA, and then if it seems likely you can pay £95 for an hours Skype session to discuss things further. If appropriate you can then go ahead and pay for a full assessment, but simply taking the first two steps would give you a good idea of the possibility of ASD/PDA. We did the hours Skype and the psychologist was so lovely and understanding and had some really good advice. Good luck x
  • June67
    Posts: 779
    Hi Worried Parent,
    All I can say is you are not alone in your child's behaviours, the way 'professionals' have treated you by suggesting; a) there is no problem, b) you're not consistent and firm and should go to parenting classes and c) totally dismissed issues such as food and bathing by saying things like don't buy it or just make him wash, like it's that easy. Maybe it was when they were three but now they are older and stronger it isn't. As you say even if it's not ASD/PDA your daughter and our son are not showing behaviour within the normal range for their age and seem very anxious and happy. All you an we are asking them for is help to work out why and to find ways of solving the issues in a way that makes life bearable. Sometimes unfortunately we have to jump through their hoops to get them to take us seriously, once things are crossed off their list maybe they will catch up with us and start trying to do something about it. Frustrating but true or they think you're the problem for not 'engaging'. Don't give up keep going back and asking questions say why what they are saying doesn't fit or make sense with what you are seeing. Her self harm is an obvious sign that she is unhappy and doesn't know how to ask for the help she needs, she needs help to find out what she needs help with.
    Regards food just take it slow one meal at a time take the pressure off who cares where she eats as long as she's eating but keep role modelling eating together etc. sometimes they come and join in. Always try to go for healthier forms of what they'll eat and get them involved in preparing the food if they want to. Present this as your need not a demand, ' I'm really lonely in the kitchen and it would be quicker if someone would help me wash the salad, cut the carrots etc.' Sometimes my son helps me and healthy stuff pops into his mouth or on the plate (separate from all other foods obviously). It's just a way of becoming familiar with food and less fearful. Being able to see exactly what is in things can be a big fear, if you cook at home it's easy to make a portion leaving out say the onion etc. which might be to strong for them if she has ADS she may have sensory issues around food; e.g. smell, texture, tasting flavours more strongly etc. I was advised once by a nutritionist for my older child (ASD) that it 'doesn't matter if he choses to eat the same meal every day if you can get something healthy inside him and take small steps e.g. similar textures, colours, shapes or flavours in small amounts to move him on. Drinking milk and orange juice (not together) will help with vitamins etc. in the meantime.' This child has still never eaten a cooked vegetable except sweetcorn (once) but has a cold crispy salad every day at least a big step up from only eating toast and rich tea biscuits. It's not easy but the more anxious and frustrated you get the more they get anxious and dig their heels in.
    I'm sure you will get there in the end just take small steps, remember you can't change her but she might change if you change how you work with her.. there are lots of really good ideas to try in the parents section sometimes it feels a bit weird but sometimes it works. It's not your fault, you are not the only family feeling like this and you care enough to be finding out how to help, she's lucky to have you. Celebrate every tiny positive to keep you spirits up, move on from the negatives just see them as learning steps instead of failures. Come back here for support any time. Good luck
  • June67
    Posts: 779
    Oh and yes with our son it's always someone else's fault even when it's obviously not to us, that's his fantasy world where he can't accept he might have been wrong..
  • Thank you so much. I'm holding the tears back.

    I am exhausted. I am really dreading the appointment with the OT. Another one of our battles has always been sleeping. In the family therapy it was also suggested that co sleeping would harm her sense of self and well being. I understand that if it was my decision for personal reasons they could say that, but this is a child that at 13 is still scared of the dark, won't walk alone to the kitchen a night, will scream if you startle her by speaking to her if she is walking upstairs at night, and that used to cry with terror when we had a "reward chart" for going to bed (when she was 7-8). They also suggested that us not having "pillow talk" was harmful for our relationship and the family dynamics.
    Our current battle is not wearing a coat. It's the wrong one, the coat is cold so I feel colder, I can't move in a coat, it's the wrong colour for school, we have no lockers, of course I will wear it (then doesnt), stop nagging me, I've heard you...etc etc. So they want us to go to classes to "learn" how to resolve conflict like this, as if this was "normal" behaviour and we were just ill-equipped to deal with it.. The way we deal with this now is to choose our battles and let her do what she wants often as the struggle is not worth it, but in this weather as a mother I have a duty to make sure she is comfortable and she will fight it with all her might. The "professionals" think it's because we lack parental skills.

    Her anxiety is very real and physical. It makes her exhausted, unwell, gives her stomach aches, she has panic attacks where she can't breathe and gasps for air, wrings her hands, bangs her head, hits the dog, pulls curtains down, throws things. Another gem of a suggestion: if she is anxious about school, she may be scared of maths, get her a tutor. I have offered her a maths tutor a million times, the answer is always NO. She used to have piano lessons where she would not speak to the teacher or make eye contact for the whole lesson and then flatly refuse to practise even though she loves music, so a maths tutor is another useless suggestion.

    Over the years we have encouraged her to take up many hobbies and activities. She enjoys it at first but then the anxiety and the pressure gets to much and she refuses to go. We used to push and push and try to convince her, and let her miss sessions etc but eventually we just had to cancel everything. She told me recently that this is not true, that she wants to go and do these things but if one day for example her knee hurts and she cant go we just stop the activity and dont let her go again. The fact she truly believes this scares me too. She doesnt live in a world of fantastic creatures or fiction but seems to "live" reality in a very peculiar and self serving way.

    I think I've known for a long time that there was something quite not right but she can often be very quiet, hold it together and say what people want to hear. She has dreams and aspirations, she is very intelligent, she laughs with her friends (although I have a nagging feeling she struggles to form deep bonds), she has only refused to go to to school a few days and puts make up on so from the outside it seems ok. It's not.

    I need help, we are at the end of our tether.
  • Thank you Ruby, I am taking a look at the website. I have always suspected we would have to end up going through the private road.

    June, I relate to everything you have said about food!!
  • RhanHRhanH
    Posts: 1,107
    Welcome to forum. I can relate to so much of what you have described but will just pick the last couple of points... Going to sleep for our daughter is a real battle as she’s worried about what happens when she’s not awake and it also brings whatever she is currently avoiding one day nearer!

    We seem to have so many coats, we try to offer a choice but invariably I’ll have to accept she won’t initially wear it. Often I say something like well it’s very cold, I’d prefer you wore a coat but if you choose to be cold that’s fine, I’ll leave your hoodie on the stairs too... often she’ll take and then wear both!

    It sounds like investigating a diagnostic path would be a good idea. There are some helpful pages under the resources section and do check out the webinars for some practical advice too. It can all feel very daunting but there are many of us here that experience the same challenges and we’re all here to help. Take care.
  • PDA_ASD_Parent
    Posts: 4,188

    "For example she was a very bright and articulate toddler, not passive."



    Not all with PDA were passive and I read somewhere (can't recall where at the moment) that this was going to be revised out of the criteria. We have two with PDA, one was a passive baby/toddler and the other quite the opposite!

    "never been obsessed by role play nor displayed inappropriate behaviour I see in other autistic children."



    That also isn't present in all PDA children. Remember PDA is a spectrum just like ASD itself is and they can also have more than one ASD sub-type, e.g. Asperger's and PDA and therefore have features of each.

    "her behaviour was always better in school, although she would take it on me in the evenings."



    "Different Behaviour Between School and Home & Elsewhere Phenomenon in Autism"
    http://docs.wixstatic.com/ugd/58c8f1_c505444bbbf44a45aab6acbad9255e1a.pdf?index=true

    This is the same for all ASDs, masking. And also in PDA there is the Jekyll and Hyde element which is common. It can also come under the manipulation in PDA.

    we always thought this type of support wasn't for families like ours.



    It's not, but not for the reasons you suggest, such as being educated and stable, it's for the reason that ordinary parenting techniques and courses don't work for children with ASD and definitely not for PDA.

    "my fear is that when she is assessed on her own she blames us for being "horrible" to her."



    This is a very real fear. There are so many cases of PDA children falsely accusing their parents and as you can imagine it can have extremely serious consequences, including children being removed permanently and even police charges. You might have read some of the cases on the forum. There really needs to be much more awareness and training about this among professionals.

    Being a stay-at-home-mum won't have meant anything to professionals, because it's a bit like someone being in a crowded room and still feeling lonely. A parent can be present but not engaging with their child and not being "warm" enough with them. It might be completely untrue in your case but the parent blame culture is alive and kicking as you have discovered.

    "Professionals/Authority and the Parent Blame Culture"
    http://docs.wixstatic.com/ugd/58c8f1_a481c4f0b37540ddbac0bdd4ad9851eb.pdf?index=true

    It's good that you have been referred to an OT. They diagnose sensory processing disorder and I would make absolutely sure they understand that they should be assessing her in the context of potential ASD and that it is likely to be the PDA sub-type and send them information from this website to read before they see her. Otherwise it could be disastrous.

    Co-morbid mental health problems are common in ASD and it's really important that her ASD-PDA is diagnosed urgently so that any mental health assessments will be in the context of her being autistic. Treatments for mental health problems often need adjustments for autistics, especially CBT and they can be ineffective or harmful if not. For PDA every professional who supports her needs to have read up on PDA or they will be useless and things will be highly likely to sink into a downwards spiral which could potentially end up with her as an in-patient. Fight for her now and don't be fobbed off, keep raising PDA! She's 13yo now and these are the most difficult years when the SHTF.
  • It's almost June now and not much has changed, except a lot more days of school have been missed and now the school won't authorise any absences. We have good days, ok days and terrible days. We are still waiting for some kind of support or diagnose and the OT replies to emails with platitudes like "I know it's hard" but can't do anything. I have taken her to the GP when she has been very depressed and I have been told: "It's frustrating but there's nothing I can do".

    I am in a hurry now because the biggest change I am seeing is that it has turned from "why am I like this, I don't want to be like this" to "I am like this because of you, because you are a horrible person". I have noticed how she blames me now for not meeting expectations she herself has. (like she wants to ask for a bag in a shop but can't so she will blame me). I try very hard to please her, to ignore the moods, to avoid escalation etc.

    We are supposed to see a clinical psychologist soon and I am concerned our local authority doesn't recognise PDA. Any advice please on how to conduct this appointment?

    We have also been referred to a course to learn to resolve conflict and "be more present as parents". One of the few things we find that works is cutting demands to the bare minimum. This includes not asking her to do hardly any chores (she says no to almost all of them), letting her stay at home and miss school (to be fair, I don't see how I could possibly make her if she doesn't want to) and giving her the choice to come with us to day trips or activities. (this was impossible of course when she was younger and a great source of distress for everyone). I hope this course has an understanding of the particular challenges we are going through. (Not holding my breath).

    Some days I feel very very very tired and sad. Other days I feel invincible. Most of the time I just plough along, one day at a time.
  • We were offered CBT and breathing exercises, as well as being told that PDA is not diagnosed in this country.

    I don't know what to do next.
  • HarHer
    Posts: 323
    Hello,

    My youngest son also has an old diagnosis of GAD. Two years ago, when he was 15, CBT was recommended to him, but it was not appropriate for him. He could not challenge his thoughts, nor could he reflect on situations. Rather, he tried to control the sessions by bringing the topic of conversation away from his 'anxiety' and on to 'cars' the psychologist's fitness routine or anything else he could think of.

    My son quickly reached the age where he decided for himself whether he wanted to be assessed and he decided against it. Now, rather than having a label of PDA or ASD, he has acquired rather more derogatory labels such as: 'aggressive', 'uncooperative' and 'rude'.

    This is why I feel it is so important that you keep pushing for a diagnosis that captures your daughter's issues more appropriately. In my experience (with both my sons) some interventions for GAD can be helpful (low arousal environments, getting to know triggers and so on) but your daughter may/will need more specialised support.

    Without a diagnosis, individuals can be grossly misunderstood. For example, this week my son went for an interview for a pre-apprenticeship scheme. He wanted me to attend the interview with him, for at least part of the time. Despite going through interview techniques rigorously before the event my son:

    - would not sit near the interviewees. He sat at the opposite end of the room;

    - gave what can only be interpreted as a very racist remark

    -adopted completely the wrong sort of body language (arms folded, eyes to the floor and a sort of snarl on his face)

    -spoke aggressively (which is certainly due to anxiety)

    - became openly hostile and confrontational

    I left the room so my son could continue the interview on his own. The manager came to find me and said (in exasperation) '[Son] needs a good slap!'

    I talked to the manager and after that, she explained how the pre-apprenticeship scheme could help my son, but he was totally set against it. So we are left with a cooling off period.

    I apologise for the length of the example, but our children's problems are not only to do with anxiety, they concern their inability to gauge social situations, appreciate the effect of their actions and interpret the world around them.


    I know what I state has to be qualified, but even if it is difficult to acquire the diagnosis of PDA, a diagnosis of ASD may help others to understand our children a little better.

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