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Different diagnosis
  • aliveit
    Posts: 69
    Hi everyone

    I haven't written for a while, probably because we've been managing to a certain extent. My son, Charlie, 9, has calmed down somewhat, the violent episodes are shorter or can be avoided. He's been taking propanolol to help calm his heart rate, and i think that teamed with pda strategies, and an understanding on our behalf has meant things have improved. Everyday is still not easy, as most of you well know, but it's got to be positive.

    However today i feel like i've had the floor ripped out from under my feet.

    Having been seen a few times by the autistic centre in france in the nearby city, after charlies diagnosis at help4psychology, we finally decided to get a diagnosis done here so that we would have some paperwork that would be accepted, especially if things deteriorate when he goes to secondary school. Also a declaration of handicap would have meant some financial help towards the psychologist we have coming to the house every 2/3 weeks.

    The doctors at the autistic centre are very nice, not at all condescending and have heard of pda.

    After 2 days of testing, filming and questionnaires we got the results today and, despite there being some traits of autism,( sensory issues, rigidity, obsessions, emotional immaturity and instability, attention to detail, severe anxiety etc) they did not find enough evidence to support ASD. They were however unable to really put a name on anything and said we should just stick with pda, although they classed this as a psycho affective disorder, and therefore not a neurological one.

    I am not bothered about labels, but if he had been placed on the spectrum it was easier to explain to everyone, and get help at school etc if needed(although for now he mainly copes). Now we still have no official documents and doubt cast on the english ones, and having informed the school he is ASD and Charlie himself, do we now retract that?

    The difference in the scores, for example, the ADOS, were massively significant, which they are putting down to the language difficulties, as his english is nowhere near as good as his french, but the doctors at help4psychology reassured us that they had taken this into account. Charlie was in a bad place emotionally when we had the 1st diagnosis done with DR Eaton, so i'm sure that would have had an effect, but not to the extent of 10points difference.

    I just feel completely lost again, and having had 2/3 bad pda days with avoidance and violence and crying i just don't know what to think, and don't know what the future holds. They insisted his prognosis was good, as there had already been an improvement with all the things we have done - getting him an indoor swing, taking away demands, understanding and helping him - so long as he gets help from a psychologist to learn to discuss his emotions etc, but he is very resistant to this, and if autistic will never really be able to have the same understanding as neuro typical people. And if we now have no official french diagnosis, what if his violence crosses the threshold of our house, which we were warned about today, and what happens if school gets too hard?


    I know i should be focusing on the positives, surely it's a good thing they think he is not autistic, but it doesn't change the way he is or how hard he is to deal with. I had come to terms with the diagnosis ASD PDA, and now i feel like i'm going to be constantly questioning everything, and the age old guilt that returns.... if it's not neurological, but psychological, then an event must have set it off??? And what event, when he was one or 2 could have been so traumatic as to cause years of difficulties?

    Anyway, a long one, but i was just wondering if anyone else had had conflicting diagnosis from 2 very trustworthy sources and how you dealt with it?

    Thanks and happy holidays

    Alison





  • Hi A

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