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Differential Diagnosis

Jenny Butterfly

My son has been treated by the Early Intervention in Psychosis team for nearly 3 years, with little success.  His case has not been straighforward and he has refused any kind of intervention, often giving monosyllabic answers but often quite articulate in defence of his own position.  This position is that he is strongly affected by what he calls "negative energy" from which he needs to protect himself via various rituals or even just escaping from "contamination."  He is withdrawn mostly, spending all his time alone in his room but not, as the CPN has recently observed "actively psychotic".  His current consultant (the fourth!) has said that he doesn't have psychosis and he doesn't have schizophrenia and she's referred him to the autism team.  I'm shocked, especially after all this time.

My son does seem to have delusional beliefs, he's withdrawn, he paces around and his self care is extremely poor.  This, to me , seemed to fit with the diagnosis of psychosis. At the same time though, I'm aware that there are other, longer standing features to this. He was referred to an audiologist as a very young child as he seemed to be hard of hearing, not responding to those around him.  He was, though, actually choosing to ignore people and remain in his own world.  He has always had what I call a "self contained" element to his personality.  And, although until recent years he has been quite sociable and able to join in very easily, he say's he's always actually felt like an outsider and that he didn't think he was ever really one of the group.

I'm finding it hard to piece things together.  He's an adult now (21) and he surely can't stay in his room forever.  What are the differences between psychosis and autism and how might a consultant differentiate.  I'm wondering what these labels mean and how they can be helpful to us in this situation.  So far I'm tired of hearing people saying that "He needs help" or "You need to get help" and the type of help not being specified.  I need to know what to do on a day to day basis to improve things. 

  

Parents

  • Well, the appointment has gone.  Our son refused to attend. 

    We have been waiting since before Christmas for this appointment with the autism team and this morning the CPN called to remind us about it. Fair enough. I said I’d do everything I can to get my son there. Then 10 minutes later the phone rang again with a woman wanting to speak to our son. So I let her! And then, to my utter dismay, all I could hear was no, no, no and no. Apparently this was the nurse from the autism team ringing to confirm as well, asking him whether he’d be coming along and, if not, whether he wanted another alternative appointment. Of course he doesn’t! He has a long history of non engagement. Doesn’t she know this? 

    Well, I would have called her back, but of course it was one of those numbers withheld. So I called the EIP team who were able to put me through and then left a message for this practitioner.

    But I guess the outcome is the same. He won’t go, they have to respect his autonomy and we’re left in the same position. I feel angry with her. Why phone up and give him the option? Don’t ask someone like him whether they’re coming, say you’re looking forward to seeing him and be encouraging, for goodness sake!

    Disbelief. What on earth was the point of waiting for this appointment and pinning hopes on finally getting some answers? What is the point of an autism department that backs down and leaves off at the first (highly predictable) refusal? Surely they have others like my son who:

    – doesn’t make eye contact
    – hates meeting new people
    – doesn’t like going into clinical buildings
    – is afraid of meeting MH professionals

    Of course, given the option he’s going to say “no.” And they’re going to respect his autonomy, even though he uses it in some seriously unhelpful ways. And say he’s got capacity, especially if they see it as an either/or thing rather than the shades of grey it seems to be. Our son is, just about, keeping himself safe, dressing himself and eating/drinking. So that must be alright then?

    All I can say is that if that’s the way they operate they must have a LOT of cancellations.

Reply

  • Well, the appointment has gone.  Our son refused to attend. 

    We have been waiting since before Christmas for this appointment with the autism team and this morning the CPN called to remind us about it. Fair enough. I said I’d do everything I can to get my son there. Then 10 minutes later the phone rang again with a woman wanting to speak to our son. So I let her! And then, to my utter dismay, all I could hear was no, no, no and no. Apparently this was the nurse from the autism team ringing to confirm as well, asking him whether he’d be coming along and, if not, whether he wanted another alternative appointment. Of course he doesn’t! He has a long history of non engagement. Doesn’t she know this? 

    Well, I would have called her back, but of course it was one of those numbers withheld. So I called the EIP team who were able to put me through and then left a message for this practitioner.

    But I guess the outcome is the same. He won’t go, they have to respect his autonomy and we’re left in the same position. I feel angry with her. Why phone up and give him the option? Don’t ask someone like him whether they’re coming, say you’re looking forward to seeing him and be encouraging, for goodness sake!

    Disbelief. What on earth was the point of waiting for this appointment and pinning hopes on finally getting some answers? What is the point of an autism department that backs down and leaves off at the first (highly predictable) refusal? Surely they have others like my son who:

    – doesn’t make eye contact
    – hates meeting new people
    – doesn’t like going into clinical buildings
    – is afraid of meeting MH professionals

    Of course, given the option he’s going to say “no.” And they’re going to respect his autonomy, even though he uses it in some seriously unhelpful ways. And say he’s got capacity, especially if they see it as an either/or thing rather than the shades of grey it seems to be. Our son is, just about, keeping himself safe, dressing himself and eating/drinking. So that must be alright then?

    All I can say is that if that’s the way they operate they must have a LOT of cancellations.

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