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Anyone got any experience of PDA?

(29 Posts)
ChristmasHat Thu 29-Dec-16 23:30:36

Have been really struggling with my youngest's behaviour and someone suggested PDA. I have been researching this evening and she fits a lot of the symptoms. Just wondering if anyone else has experience of this and what I can expect if I go to my GP?

I would also be grateful for any tips on managing her behaviour, particularly in terms of getting her back to school next week.

Thank you.

donajimena Thu 29-Dec-16 23:34:06

There is a Facebook group which is private (no one can see you are in it) which might help. Search under PDA x

OneThingAndThenTheNext Thu 29-Dec-16 23:36:27

GP probably won't be much help in relation to PDA as most counties won't diagnose it or officially recognise it. www.pdasociety.org.uk is really helpful, and there might be a local support group to you. Mine is a godsend.

notapizzaeater Thu 29-Dec-16 23:37:42

Agree - lots of La don't believe it exits - you might get ASD with demand avoidance

Badhairday1001 Thu 29-Dec-16 23:55:45

PDA is becoming much more recognised and I am seeing it on more EHCP's/statements but it is true that many local authorities don't diagnose it specifically. You would need to see your GP and discuss your concerns, go with evidence and get the opinions of other professionals that your child has contact with e.g teachers, list the specific difficulties she is having. The GP could then refer her for assessment and diagnosis, diagnosis is usually made through a multi disciplinary team, it's not a quick process. Look on the NAS website, they have advice and guidance about strategies that can be used to support children with PDA. The main things I take from working with children with PDA is that it is anxiety led, the child can't help their reaction and it isn't their fault. Strategies to reduce anxiety and positive relationships can help a child progress and lead to positive outcomes.

ChristmasHat Fri 30-Dec-16 10:10:44

Thank you, will look at website. It worries me that it could be a long arduous process, she is in her GCSE year and I can't get her to school. She is bright and predicted to do well. She has always been difficult and stubborn but since the separation has got much worse. She hasn't left her room for two days now.

Trifleorbust Fri 30-Dec-16 10:13:55

PDA is not consistently recognised as a condition.

Trifleorbust Fri 30-Dec-16 10:16:01

Why does she say she won't go?

ChristmasHat Fri 30-Dec-16 12:39:18

The reasons for avoiding school vary from having a headache or stomachache, feeling sick and dizzy, feeling too anxious and she just refuses to get up. It is worse after she has been with her Dad, she spent the two days after Christmas with him and hasn't been out of her room since.

She finds it very difficult to say what is actually wrong so we end up going round in circles and I am at a complete loss as to how to actually help her. Gentle persuasion, sanctions, planning nice things, asking her to help me, nothing works. When she is feeling well she is the most wonderful bubbly, vivacious, up for anything kid and I miss that.

Badhairday1001 Fri 30-Dec-16 21:29:07

I would definitely take her to the doctors ASAP. It does sound like she is suffering with her mental health whatever the diagnosis is and they are in the best position to help. It must be really hard for you and hopefully you will be able to get some answers and support soon.

ChristmasHat Fri 30-Dec-16 21:43:29

Taking her to the GP sounds easy, doesn't it? But I haven't been able to get her to leave the house. I have left a message for him which hopefully he will pick up next week. We have had been discharged by CAMHs as they felt they couldn't do any more for her. She sees someone for anxiety in relation to a chronic illness she has dealt with all her life, however that doesn't seem to help as it is supposed to help deal with the symptoms of her illness but as it is under control at the moment there are no symptoms. She has real difficulty actually articulating what she is feeling which is one of the things that led me to PDA.

Offred Fri 30-Dec-16 21:43:59

My DD (10) is going through very similar things and her symptoms fit PDA but as others have said it is generally unrecognised as a proper conditioned.

My tips would be to speak to school ASAP and request they make referrals to ed psych (as a priority even if it is just on the basis of school anxiety/non-attendance), occupational therapy and speech and language. Visit GP and request referral to paed and CAMHS ASAP. It is likely there will be very long waiting lists. Mine is primary so may be different process for high school.

For you I would recommend reading about ASD parenting approaches as that made a massive difference to my DD. Also look up the LA services that deal with special needs support, as part of the local offer the LA should have an advocacy service.

Be very prepared to be told it is parenting without any real prospect of support. Be prepared to be offered a number of parenting courses that are not set around parenting children on the spectrum and are not proven to be effective and hold out for an ASD specific one. Be prepared for several years of fighting to get support.

Don't accept being told that if she is at home xyz thing can't see her - usually they can but you have to fight for it.

Contact education welfare yourself the very first time she refuses school and let the school know the truth. Communicate as effectively as you can that this is social and emotional difficulties not just bad parenting/a naughty child.

Apply for DLA with help from CAB if it is appropriate re her difficulties as she will then be entitled to reasonable adjustments and shouldn't be discriminated against even if no diagnosis.

If you need legal advice re SEND speak to coram family law.

Offred Fri 30-Dec-16 21:46:48

You need to get in to see the paed. My dd was discharged by CAMHS because she 'wouldn't engage' (wouldn't leave her room). Saw the paed the next week and they immediately referred back to CAMHS.

All the services are cut to the bone IME and avoid spending money to help. You have to fight and argue and repeatedly refer.

Offred Fri 30-Dec-16 21:51:12

If she can't leave her room due to anxiety request a home visit or a telephone appointment.

Will she engage?

My dd absolutely won't. Clinical settings provoke huge anxiety as she doesn't want to be seen as abnormal or talk about her feelings. I did manage to get her to the gp eventually though and paed has managed to deal with just seeing me without her on occasion.

Mine has been out of school for 3 months now, my advice would be to act quickly and force school to take it seriously before it becomes very difficult to deal with.

Offred Fri 30-Dec-16 21:55:53

Oh and read the guidance for schools here

Thingscanonlygetbetter41 Fri 30-Dec-16 22:38:31

It sounds quite like depression/anxiety to me. My dd has suspected PDA (although not diagnosed as camhs don't diagnose it in our area, she has a diagnosis of ADHD) but most people who have worked with her say PDA straight away. She won't conform to ANY instruction unless she's in control of it, both at home and school , she has to rewrite it so it's under her control. She becomes very defiant and aggressive when something is non negotiable and will flatly refuse despite the consequences, even if she is to gain from following the instruction. She has been excluded from mainstream and copes better in a special EBD school where they are more understanding. It is incredibly frustrating though as I do struggle to see how she can get through college/work/life without occasionally conforming. You can speak to GP on phone or ask school to refer to CAMHS but be patient as it's an incredibly slow process, 10 months till first appointment, 18 months till diagnosis!

NettleTea Fri 30-Dec-16 23:34:09

my daughter has a diagnosis of Aspergers and PDA as well as a lifelong progressive condition. Hers became more pronounced as she transitioned to secondary school, increasingly having the symptoms you describe which were initially blamed on her illness and change of medications (she was very unwell in yr 7 due to not being able to do her treatments) and ultimately leading to full on avaoidance and school refusal at the beginning of year 9. We had a long arduous journey, ran into a cow of a woman who was head of a small learning centre who, as suggested by PP, laid the blame at my parenting and threatened to take me to court for non attendance, which resulted in me deregistering her from school and home educating her, which was a bloody joke, but got the council at least off my back.
we went privately for an ASD assessment, but also managed to get a referral through the NHS to the Elizabeth Newson Centre which confirmed the private diagnosis. Its been a struggle to get her other medical team to accept this diagnosis too, as well as family, because they only see the bright and bubbly side so cant believe it tbh. The NHS diagnosis is a relief in that way
She ended up out of any education at all for 18 months I would say, and I tried to avoid all demands except her medical treatment. Sometimes it was hugely frustrating and I shouted and raged and felt like a dreadful parent, but in yr 10 she decided that she wanted to go into adult evening classes to do 3 GCSEs, and this year she is doing another 3 part time at a local FE college. Its taken over a year to get an EHCP into place, and its still not there really.
The online support helped immensely - PDA facebook pages, talking with other parents who 'got it' and the PDA resource page.

Offred Sat 31-Dec-16 00:32:41

I feel for my dd being forced into home educating is just the LA, school etc forcing me into a corner and my dd not getting any support. I flat out refused to deregister her recently. Because I contacted EW they have no plans to prosecute but even if they do I have reems of evidence that show she has SEND and it is not parenting - not least that I have three other children who have never even been 5 mins late for school, even when DD was going to a seperate school that started at the same time.

Stick to your guns and be prepared to fight for what your DD needs really is what I would suggest. Most of the time when they suggest parenting it is because they are trying to make it not their problem. Do not allow them to do this.

I have pulled up research on the effectiveness of programs they have suggested for ASD children and have directly asked program leaders about ASD children on their program and been told it is not effective so have then used that to refuse etc.

Currently on waiting list for ASD specific program but have so far not had any actual help at all from anyone 12 months from time of initially asking myself for help.

ChristmasHat Sat 31-Dec-16 08:08:42

Thank you all.

Things, I agree there is a very large element of anxiety/depression which her older sister suffered from at the same age, but it is the absolute refusal to do anything that might help her help herself that has led me here.

Offered, thank you for sharing your story. She will engage to a certain point, she is very good at saying the right things so that she is left alone. She tells her psychologist, the GP, the nurse specialist we see that she is fine and coping, but gets home and refuses to do anything they have asked her to do including recently taking antibiotics for an infection.

Nettles, glad to hear your daughter is getting support and managing to do GCSEs. Mine is due to do hers in May/June. School have put all sorts of things in place to help her but I have to get her there first.

The school have set up counselling, art therapy, drama activities, allowed her to sit out of the really noises lessons but she hasn't really engaged with anything there. I have tried to find our who our EWO is without success, will keep trying.

She also has lots of fears and phobias, ranging from fairly normal ones like spiders to completely irrational ones. She hates anyone being behind her, doesn't like being touched except on her terms.

I am really struggling, going through a divorce is not helping and I maybe I am just clutching at straws here and this all could be to do with our family breaking up and her inability to cope with it.

Offred Sat 31-Dec-16 12:07:56

My dd is like this. She can't have any hair at all in a hairbrush if she is going to use it, she has to have her own brush that no-one touches and that has to have all the hair picked out of it by me before she will use it. If her toothbrush looks suspicious in some tiny way it has to be thrown away and she has to have a new one. She won't wear skirts - which is deeply problematic for uniform which requires skirts. She struggles with having the top button done up on her shirt. She needs me to wash her, she doesn't like washing or dressing and it takes a long time and a lot of effort to get her clean and dressed. She bites things when she is stressed, stops eating, gets acid tummy etc

It really helped to reframe things from 'she's being deliberately annoying' to 'she has sensory needs' which was against everything everyone was saying at the time which was along the lines of 'she is being naughty because you aren't giving her adequate boundaries'.

I'm not a parent who is bad at boundaries and I have three other children who are all happy, settled and successful at school and who have been going no problem even though she has been refusing.

Rewards and consequences, which is what everyone seemed to suggest, have never had any effect on her at all. Seeing her behaviours/idiosyncrasies as expressing sensory needs and adopting/trying ASD friendly approaches resulted in an overnight change.

It will be difficult to get her back to school though because they have spent years refusing to acknowledge my concerns and saying she hasn't got ASD but recently they filled in a questionnaire that came back ASD traits whilst saying they hadn't seen any so I have used that to say - you have seen it, you have just failed to recognise it in her and ask for things she needs.

Offred Sat 31-Dec-16 12:12:44

My dd is younger but she has a younger version of saying everything is fine that involves refusing to engage with anyone - CAMHS, paed, school, EWO. She says they all want to tell her there is something wrong with her and they don't want to listen to her and she thinks she is fine.

It's tough. She is leading a return to school meeting on the first day back because I have finally managed to get them to accept she has issues they have not recognised or provided for in school and because she is leading it she has said she will go but we still have to deal with actually getting her there on the actual day which will be unpredictable.

NettleTea Sat 31-Dec-16 12:24:18

My daughter didnt have any SEN diagnosis when I deregistered, in fact I was told by the woman from ISEND that I would 'get the diagnosis I paid for' when I suggested going privately as was concerned about the time things might take via the NHS - hence the parenting implications and threats. If I had known then what I know now I would have pushed in a different direction, although to be honest my daughter needed that time to recover and rebuild her confidence and, having PDA, to decide for herself that she needed to go back in and GCSEs, as well as accepting that she needed a more structural educational environment in order to learn.

NettleTea Sat 31-Dec-16 12:31:20

and yes, I would say that the changes are almost certainly affecting her. Is she involved in knowing future plans for the family? Knowing how the routines will be. My daughter was recently very ill and needed hospitalisation - as it was an emergency admission none of the 'usual' things happened and they chopped and changed her treatment and hospital alot during the 6 weeks she was there. I found that she needed them to explain everything to me, while she listened, and then I would allow her time to process everything and leave her for a bit to mull it over before going back in and seeing where we were going. At every point it had to be her decision, but she couldnt make quick decisions, and she panicked when the info was initially given so couldnt take it in/shut down.
They understood that they could not present changes out of the blue, they needed handling carefully, and that they had to be patient.

Any rush / time frame made things really bad, so actually the pressure of knowing her GCSEs are coming up are probably adding to your daughters anxiety, especially if she is worried that time is running out and that she is missing classes. Try to be open and honest with her as much as possible, try to remove as many uneccesary demands as possible, let her lead as much as possible. Its hard but stepping back was the only thing that helped

HandyWoman Sat 31-Dec-16 12:37:03

Hugs to you OP. How long ago did the separation with your ex happen?

Girls on the Spectrum are almost invisible to a lot of schools. It's hard. My dd has started Y7 and has had a diagnosis for 3 yrs and I've still been banging my head against a brick wall all term with school. SEN team not really interested. Very frustrating. Her diagnosis was a journey of 4 years.

I think the demand avoidance aspect can make things get tougher from age 13 ish. So tough.

Expect getting help to be a constant, constant, battle. You are the expert in your child.

flowers

ChristmasHat Sat 31-Dec-16 19:07:28

Handy, he moved out in February. We had been married 21 years, together 29. He was emotionally and financially abusive but I didn't realise that until early 2014, he kept telling me I expected too much and gave me lists of reasons why I should be happy whenever I said I was unhappy or wanted him to do more with me.

My main worry is that they will try and blame me for how my daughter behaves as I am struggling and have admitted it and am currently on antidepressants and receiving counselling for PTSD.

Her anxiety is definitely worse since the separation.He never wanted a third child and blames me for getting pregnant even though he refused to use contraception, medical problems meant I couldn't, and resented the fact that I gave up work after she was born. We did discuss it and agreed it was the sensible thing to do, I had four years off. He never developed a relationship with her and now expects her to just run to him with open arms whenever he decides he wants to see her. He won't do regular short periods of time which is what I asked for initially as it interferes with his life so he insists on having her for entire days/weekends. He has no compassion or empathy and doesn't believe in mental health issues so she spends her time with him pretending everything is fine and then is a complete mess when I get her back.

She has refused on occasion to see him but this causes problems for the other two as he whingesc and moans and plays the victim saying he doesn't understand why she doesn't want to see him and this upsets them.

He is very good at playing the victim and had them all believing that he was totally broken hearted when he first left and told them it was all my fault. He was so broken hearted that he is now in his third woman that I know of since he left.

For my own mental health I am completely no contact with him. He has made the whole divorce process very difficult, delaying at every step costing me a fortune in fees and leaving me struggling financially.

I did have a few threads running on here when I first started the process but had them deleted on the advice of my solicitor. Some of you may remember. I had spent the best part of 48 hours in hospital with her when he texted to say that he was going to bed at 9pm on a Sunday evening, and if they let us out to get a taxi home. Her anxiety increased about tenfold after that stay as at 13 she realised that she could actually die and he wasn't there and refused to take us home. We arrived home early the next morning and he had already left for work, we didn't see him that night as he was out drinking. The following day he called me from work looking for his diary and didn't even bother to ask how she was, and yet he wonders why she doesn't want to see him?

Oops sorry that is long!

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