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Pre diagnosis
  • Amanda
    Posts: 281
    As part of the conference I would like to record some parents experiences of what it was like pre diagnosis, some of the things that professionals labeled you as parents and howv that made you feel and the impact that had on parenting your children at the time.

    I'd be really grateful for the input.
  • My son was viewed as non=communicative child prior to diagnosis. He was no trouble at school (nursery year). It was thought he would outgrow this as time went on.
    In reception he was verbally abusive and threw things. Twice I had to go and collect him from school. He was then viewed as an unruly, disruptive child and I had pitying looks from the teaching staff. I was asked if home life was difficult and did I need help (I am a single parent!).

    Hope this is helpful.

    From Scorpiomum.
  • His issues were noticed age 2, first appointment at just under 3. He was first diagnosed with "behaviour problems" and I was asked to go on a "relationship play group" course as they thought I had not bonded with him because I worked full time (not true) and he was a real puzzle as he had some features of an ASD but not enough for a diagnosis. Assessments carried on until he was 5, and SALT at the Child Development Centre had been to Nottingham on training in recognising PDA, and she went through checklist for PDA at his last appointment. Later on we were refered to ENC for formal diagnosis and more advice on how to handle him (not many experts in our area so little advice to be sought locally).

    At time I wondered what we were doing wrong, and its hard when everyone is staring at you and your child because they are throwing themselves all over and shouting, or he has attacked someone or bitten them. At least you can start trying to understand once diagnosis is made, but it takes so long!
  • Amanda
    Posts: 281
    Thanks for sharing I can definitely use these

  • We were the first people to recognise there was a problem - initially I could see there was an unusual language delay which I felt he would tolerate poorly because of his temperament and I asked for an audiology and speech therapy assessment to get him 'in the system' knowing there can be delays.

    It was very frustrating when we had some professionals who told us we were in denial when we were very sure he had a problem in the here and now and quite likely one that wasn't going to go away and that he needed support with, just didn't agree with them about the diagnosis. It was especially frustrating to see how professionals 'lock down' and just don't see anything which might cast doubt on what they have decided.

    We had one consultant accuse of neglect because we refused to proceed to having him rubber stamped with the wrong diagnosis and she then wrote to us that if she was unable to diagnose him with that, they would 'examine his bonding and attachment in great detail'

    We had one teacher who interrogated us about bedtimes, diet etc until I stopped her and said "We are perfectly adequate parents for any normal child" (we did after all have a child in the year above - I really feel for parents whose first child has PDA)

    Definitely the worst thing was having people treat him as if he had a different problem because that approach didn't work. I remember finding out about PDA and I wasn't sure it fitted him - I feel the description wasn't 'neutral' enough, manipulative seems quite a loaded word and of course no parent wants to feel they are manipulated. It was easy enough though to accept that he was using any means possible to avoid demands.

    I did say to the SALT when he was four that I felt he needed anger management help and she suggested I should set up a group and run it as she agreed but they didn't have anything for children his age.

    We felt that we didn't need a diagnosis for ourselves, and he got a Statement of SEN before diagnosis but it was clear that the system coped better where there was a diagnosis. Whilst an inaccurate diagnosis was still in too many people's minds, it was worth getting a more accurate one. I still feel he's not the most brilliant fit even with what seem to be becoming the key features of PDA, and, as suggested on his assessment day, his other difficulties have a lot to do with his demand avoidance, but the bottom line for me is that if we think about how life is for him with PDA, and the strategies suggested for dealing with PDA - those two things make a positive difference to us.

    I'm not sure life is easier in terms of explaining to other people though - pathological demand avoidance syndrome is an unfortunate name (I used to say "communication and behavioural disorder" and perhaps I still should!). But they tend not to argue with you so much that there's nothing wrong with him, thank goodness - that was another hard thing to deal with.
  • Garden
    Posts: 329
    My daughter, who is adopted, was thought to have sth called 'Reactive Attachment Disorder' which is something that children who were neglected in the first few months of life can suffer from. And as she was badly neglected (which is why she was taken into care and then adopted), this made perfect sense as a diagnosis, especially as a lot of the symptoms of RAD are similar to PDA. The big overlap is with the need for control and the tantrums.

    The problem I see is that many adopters are told that their children have RAD because it is almost a default diagnosis if there was neglect (and there usually was) and people are trying all these Attachment therapies, which often make things worse (as they are sometimes a bit confrontational). And no one mentions PDA of course. I was really lucky to find a paediatrician (now retired) who diagnosed PDA as soon as I started to describe our daughter's behaviours - this is after six years of people putting it down to the early neglect.

    Thing is, there is a sort of autism which is brought about by neglect - apparently the part of the brain that is affected by neglect is that same part that's affected in autism. So we're not sure if our daughter has PDA as a result of her early life experiences or if it's organic, if you see what I mean. But the paediatrician felt that there is a lot of undiagnosed PDA in the adopted population - she said that the children inherit it from their birth parents, who neglect them because of the PDA. I don't know what you make of that, but we are pretty sure that the birth mother has PDA, having reread the files.

    I think that it would be really great if you could flag up RAD versus PDA, as there are similarities, and RAD is certainly being diagnosoed where it's not appropriate.

    If you want more info on RAD, you will easily find it on the web.
  • Amanda
    Posts: 281
    Garden this is something I have heard from other adoptive parents, yes please any info you have would be appreciated.

    Dirtmother than you for your comments and honesty I know I can use them
  • webbwebb
    Posts: 2,577

    I have an older daughter and knew within weeks of Matthew being born that something was very wrong with him. He would not sleep for more than 20 mins day or night and when he was awake(most of the time) he screamed all the time. Nothing soothed him!
    So at 5 weeks I took him to the GP, after a 15min consultation I was told that I was paranoid and over anxious. The GP said he would be laughed at if he reffered my son to the hospital.
    I felt belittled and humiliated.
    When Matthew was 4 months old I took him again to the GP. I was told he had colic and did I really want to deny a very ill child of a bed in hospital just for my child with colic!
    I felt very hurt and confused.
    I didn't go to my GP again regarding Matthews behaviour.
    Matthew went to Nursery and had lots of extra support. The nursery told me that the peadiatrician was on long term sick but when she was back they wanted Matthew to see her.
    At age 4 Matthew saw the peadiatrician and she diagnosed autism.
    I felt very angry, I had known something was wrong and it had taken 4 yrs to come to light.
    Iaccepted the diagnosis at the time but never truely saw him as autistic.

    The light was well and truely swithced on when he went to special school at the age of 7 and they recognised he had PDA. I was relieved as this diagnosis fit my son perfectly.

    To sum up : My GP made me question my own parenting skills, he made me question my own sanity and made me feel very unimportant!

  • Lixina
    Posts: 289
    Regarding RAD and PDA, I have a theory that some cases of PDA or PDA-like behavior can be an autistic way of coping with stress. It certainly seems true of me, as my demand avoiding really started when I entered school (in a very bad school).
  • Pounce
    Posts: 39
    To balance out the experiences so far posted (and I am in no way suggesting that they didn't happen by the way!) I would like to add that my personal experiences were completely the opposite.

    My dd, the only child in the family, was a little angel until the age of three. Then, well, she wasn't! With no yardstick, I assumed it was a just a difficult phase and it wasn't until she went to school that her problems really started to show themselves.

    I realise now that I was in the classic PDA situation of being so used to dd's behaviour and her manipulation etc that I had tuned in to her almost completely.

    She almost immediately began to show (what I now know to be) PDA characteristics and within weeks of her being in school I was called in and sat down and told, very nicely, that she was going to be discussed and her name put forward for assessment at the CAS.

    Never at any point have any of the teaching staff (bar one) made me feel bad or useless or inadequate. I whole-heartedly thank the then Head Teacher for moving so quickly on this and helping my dd as soon as possible.

    I know that I have been incredibly fortunate in the way that school and the subsequent professionals have handled dd (and me) and it genuinely angers and frustrates me when I read of parents in the same situation as me who have to fight tooth and nail for everything, when I haven't. The injustice of it all really gets to me.
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