Hi my nearly 8 year old daughter has diagnosis of Autism spectrum disorder, learning disabilities, sensory problems and sleep disturbances along with severe anxiety. For the past year we have noticed her behaviour has changed. It has become increasingly violent and her moods switch at the drop of a hat. She can become very violent (she has been known to hit myself, my husband and her brother) I was questioning whether she was entering puberty early. I was doing some research online as we have her annual EHCP review and I came across PDA. I honestly could of wrote it personally about my daughter. Even things I never thought anything of can be a sign. For instance when she doesn’t want to do something she has been know to throw herself on the floor and say her legs are broken and she can’t get up. Other things like I have been fighting with speech and language about her as she appears to have good levels of it but I keep telling them she hasn’t got a clue what it means. She appears well behaved at school but at home she can get very angry over nothing. One second she is fine, the next she is breaking things, hurting people and all kinds. She also doesn’t see myself and my husband (her father) as authority figures. She shouts that she is the boss and it’s her house etc. She is also very domineering over her younger brother. He has to do what she says. She also shouts over people if she doesn’t like what she is hearing. We tried taking things away from her if she is naughty but it doesn’t effect her at all. So I’m looking into PDA. The only thing that doesn’t really fit is she has none to very little imagantive play. She is and has been obsessed with spongebob square pants since she was 6 months old. Anyone on here have an info on it? Any advice would be welcome. Is it possible to have a diagnosis of Autism and PDA or does one cancel the other out? It’s all very new to me
thanks in advance
Hi Twostepsbehind21, I’m autistic with pathological demand avoidance. This wasn’t mentioned in my diagnosis but I knew I had this before I even considered autism. It’s still relatively new, as a diagnosis, so not all clinicians will know about it or be able to diagnose it. I was just thinking this morning that I might contact a woman who I know (who my friend knows) has a diagnosis of it (autism with pathological demand avoidance profile) to ask her for some tips on how to live with it as this seems to be a very big part of my struggles. I’ve only realised in the last few months, how much of a part it does play in my life. So yeah, it co-occurs with autism or it is all part and parcel of autism. I know that they want to separate out all the separate conditions relating to autism, but I just think they’re all part of the spectrum and some are stronger than others. PDA fits me more than anything especially with the violent mood swings.
Hi BlueRay. Thank you for your reply. I have tried doing some research online about it but I must admit it got very confusing. I assume PDA would be a comorbid condition with Autism. She definitely has Autsim there is no question of that I just wanted to know if it adds to that diagnosis. That’s if I can get her paediatrician to listen as, as you have said it seems to be fairly new thing to be recognised and not everyone sees it or understands it. We are in the process of asking our daughter to be moved to a special school so if she does have PDA then she will need even more specialist help so I’m trying to find out as much information as possible
There’s a Facebook Group for PDA, which I tried to join, but at that time I had no diagnosis of even autism so they wouldn’t let me join but they were helpful. I would probably be able to get the link if you wanted, they might be able to give you some pointers. I know when I’ve tried to research it I get all confused with it, it all seems too confusing, but I’m realising that it’s definitely an area I could do with some help and I’m quite sure that the younger you are when you get the help the better it is. Stick with it, you know your daughter better than anyone else but certainly, like you said, often we don’t realise some of the behaviours are part of a ‘condition’ so knowledgeable help is always welcome. Good luck with it. My friends son has it and although he copes at school (he’s 13) she has real difficulties at home with the avoidance and the violence.
I have joined a Facebook group for PDA and asked for some advice. From what I can understand it’s all down to where you live as to whether they rognise it as a condition or rather just anxiety. As my daughters paediatrician has said our area has bad resources for children with autism I’m not holding out much hope that they recognise this as a problem. My daughter copes at school as well but at home it’s a different matter entirely. Thank you so much for your advice I really appreciate it
Yeah, that’s what I found out, that it depends on where you live but that it’s more rare than common to find anywhere that has an understanding of it.
I think the usual school day/work days are just too much for many of us on the spectrum. It’s an awful lot to process and no real time to process it, so it can all get too much and we either explode or implode, then we have to do it all again the next day, and there never seems to be enough time to process stuff then stuff starts backing up then getting muddled up, it’s crazy. With all the things I have to do to keep myself well, there are only about 4 hours left in a day that I could use for work. And if I wanted to do stuff like make myself pretty, with make up and stuff, I’d have less time for work, and even with 4 hours of work, I would still need time to process it all, which would leave no time for socialising in any sense of the word. Which can then lead to difficulties with isolation and loneliness. Which would impact on my work, which would require more time to process. It goes on and on. For me, the world moves far too fast, it’s as if people are trying to cram too much in, although they appear to cope with it, but it’s all too much for me. So I can understand why your daughter appears to cope at school then let’s loose when she’s at home. The slightest thing could trip me out when I was younger but I would try hard all day to try to fit in and get on with it. I am realising that the world simply works too fast for me, it’s like nobody stops to smell the roses or to just be kind to each other. This is a problem for people with autism, especially for those of us who are considered ‘high functioning’, because it’s like we’re almost being forced to fit in with somebody else’s pace of life which is in conflict with our natural pace. I’m sure that many of us would do just great if you were enabled to live our lives at our pace.
And thinking about it all now, the avoidance aspect of me is really strong just now so really, I think it is all part of the autism. I need more time to process things, I have tunnel vision etc, all these things add up and when life gets too much, the avoidance factor gets stronger as a form of a natural coping mechanism I suppose. There are so many aspects of life that I just don’t understand and I don’t understand why people go along with them so my avoidance of them also links in with autism very much in that we often need a really good reason to do anything.
It’s very complex. Your daughter is a very lucky girl, to have such a good understanding parent. Something else as well. When I had a huge row with my dad, at the end of last year, although I was sad that we argued, I also felt this strange feeling of aliveness. Not that I like to shout and argue or that I enjoyed arguing, not in the least, but I had suppressed this side of me for so long that in some ways it was a bit of a relief. I thought wow, I am still alive. I also realised that the argument was actually about family dynamics, I was the scapegoat, my dad was scared, but besides all that, it did feel good to express myself, even if I didn’t do a very good job of it. So, although of course I know you all need support with this, it is a sign that your daughter is still in there, alive and kicking. My son was little before my dad sussed out how to deal with me when I was having a meltdown. He just completely ignored me, as if nothing was happening, and I would come round much quicker. I think it’s because the meltdowns are a form of communication and when the other person joins in, they’re reacting to what I’m saying or doing, which is never representative of what I’m trying to say. So when my dad would ignore me, it’s like I was able to express myself, badly, but when it was all out of me I would be calm again. Whereas if someone tries to join in, its even more frustrating because I want to tell you you’re wrong, but it’s all out of hand by then anyway.
I think if her behaviour has changed over the last year, it’s an indication that she’s probably not coping with school. I loved school but every year got increasingly harder for me. Not in terms of the work but in terms of everything else, there are so many changes happening and I couldn’t take them all in but couldn’t talk about it to anybody. By the time I was 14 I didn’t go to school for a whole year. I never saw my parents as authority figures either and felt like I was the parent to my older brother and younger sister. I made sure that if I didn’t think my sister should go somewhere, she didn’t and visa versa, if I thought she should go, even if my Mum said she couldn’t, I would ‘let’ her go! I honestly thought I was in charge. The school said, the problem wasn’t that I thought I owned the school, but that I believed it! I had no idea what they were talking about!