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Is it PDA?
  • Hi, I hope some of you can help me. I suspect that my son may have PDA. He is 5 and has just started school - he seems to be the model student there, although almost too passive and not himself at all. However, since he was a toddler, we have suspected something 'isn't right.' I first looked to aspergers, but he definitely seems to fit PDA more to me but then some days I wonder if he is just a quirky head strong little boy. Concerns include: multiple daily battles over tiny things i.e. getting dressed, not having chocolate ALL day long, eating his tea, going to sleep, doing something we want to...I could go on forever, huge meltdowns and no concern over throwing himself on ground screaming even in public. Everyone calls him the negotiator because he will negotiate everything. Over the years, I have reduced the demands on him so much that I think it masks the true extent of his difficulties. He is unable to share his things AT ALL, can be very spiteful to his younger brother, has to have everything done his specific way and will not be told/advised on anything. Lots of anxiety about silly things - what if someone stole the lego figure out the car? Repetitive questions and asking stuff when he knows the answer. Slow processing time but seems very bright. Very controlling/obsessive with me (can barely talk to anyone else, use the phone, won't even go to the toilet without me) - seems to blame everything on his dad and can be really quite unkind to him. Clumsy, can't seem to sit still (although does brilliantly at school). Strange gestures, unusual turn of phrase at times. Bossy, likes to play the teacher, can't cope when little brother won't play game exactly the way he wants to (despite him only being 2). Recently become very silly, disruptive. When focussed on a task, he is fantastic, determined and will stick with it (always has even at age 1 and a half). But seems to be finding it harder and harder to get focussed/engaged in task so tends to play up, be silly - can flit between being adorable, very sensible to charging around manically. Takes others rules very seriously i.e the law, teachers etc and expects others to follow his rules but is happy to break ours. Doesn't seem to care when he hurts others other than not wanting the punishment. I think that is enough for now, but your views are very welcome. Sometimes I cope fine and we have the most amazing relationship - he is a wonderful fascinating brilliant little boy, but other days it feels so overwhelming like I have nothing else to give because he has taken it all. He is much worse in the holidays, which is why we are probably feeling it so much at the moment.
    Thanks for reading and sorry it is so long!
  • Your son sounds to have a lot of similarities to my son at that age. My son eventually got a PDA diagnosis (asd that resembles PDA profile)
  • At what age did he get his diagnosis?
  • RhanHRhanH
    Posts: 1,168
    Your son sounds very similar to our daughter too. We found starting school was the catalyst for many areas of her life magnifying in intensity & causing her anxieties to rise. Our daughter is now 7 and in year 2, we have a PDA diagnosis from a community paediatrician and an EHCP with a place at a specialist school more able to cope with her demands. Could you ask your GP for a referral and discuss? The clinicians guide found under the resources section of this site might be a useful document to take with you and, have you considered completing the extreme demand avoidance questionnaire? That was real confirmation for us and armed with a diary of incidents and how PDA techniques helped I'm sure assisted in our diagnosis.
    Our children are very special, they can be very caring, loving and tolerant at times but this often takes a considerable effort which, in our case, invariably results in a panic attack and violence. I try to remember in our dark times that our daughter is talented, very capable & has a great personality but just shows it in a different way to us!
  • My son had significant difficulties from year 2 when he was 6. He was 11 before he was eventually diagnosed. I would like to think that if you are aware of PDA that you will get an assessment must faster than we did. PDA strategies made a massive difference. The parenting courses we did tended to escasperbate the difficulties with more rules, more demands, more rewards and consequences and of course more praise!
  • I'd say he sounds very PDA, I would ask the GP for a referral for an ASC assessment to somewhere with PDA expertise.
  • Thank you for your comments. I will book an appointment with GP - I have mentioned it to them before but they wanted to wait until he was at school so they could have report from them too. Problem is he is just quiet at school so least of their problems but will try to push for an assessment. Just wanted some reassurance that it wasn't just me thinking he sounded PDA!
  • My youngest, when she was diagnosed HFA, the paediatrician told me that school information is not always helpful.

    Look up on the NAS website and other sources, the different behaviour between school and home. On this (PDA Society) website look under the description of PDA traits and behaviours as there is specific information about how some PDA children mask it all at school (which is common to all autistic subtypes) and perhaps print some relevant information out so as not to be fobbed off by the GP or other professionals.

    My daughter does not present obviously PDA at school, she shows some anxiety there but is explosive at home and resists everything. There are other parents who say the same about their PDA child on this forum.

    School reports are just one source of information, if you can gather any other information from things like playgroups, regular activities where they have seen his behaviour, anything else outside the home that will suffice.

    NHS NICE Guidance (although none specific to PDA) usually states (I know it does for ADHD) that the behaviours must be present in more than one setting, there is no rule about it being school, it's just that professionals lean automatically towards that as the obvious choice, they must not be blinkered about it. Good luck.
  • webbwebb
    Posts: 2,593
    When you go to the GP appointment, take a copy of the Clinicians Booklet which is on the website under Resources. It was specifically written for Clinicians ie GP's Paediatricians etc.
    Also take one of the NAS new leaflets that describes all 3 ASD's ie Autism, Asperger's and PDA in the same leaflet!
    Planet Autism is right, don't let the GP fob you off with "it's not seen at school", print out the info on the website about children who "mask" their PDA behaviours!
    Also write a letter to your GP asking for a referral to a Paediatrician or a Specialist in your area that does assessments for PDA; take the letter and all the info to the appointment and no matter what he/she says, leave the letter and information with them!!!
  • Thanks so much for the advice. Will put together a pack of stuff before going to the appointment. My GP is pretty good so fingers crossed. Will keep you posted!
  • MamaA
    Posts: 1
    Dear Confused10,

    Just looking for information online, came across your post, and I feel I could be writing the exact same note right now. My son turns 5 in October, and he is super good at school, very bright, has many friends at school, but can be so so so difficult at home. Can be so aggressive with us or with his little sister when he doesn’t get his way and can also be adorable when things are right. Just wanted to get in touch and see how is your son doing and if you ever received a diagnosis and how was the process. Thank you so much.
  • RhanHRhanH
    Posts: 1,168
    Hi MamaA, welcome to the forum. I’ve sent you a private message, look for the messages tab and you’ll see it highlighted.

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