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Teenager with Asperger's- Hallucinations

Cassie

Hi

My son is 17 and was diagnosed initially with prodromal psychosis, and later with Aspergers after a 4 month stint in a  day unit earlier in the year. I am reasonably confidant that this diagnosis is correct, because he was observed in a clinical environment amongst peers for a long time before it was made.

However, for around 3 years he has been having visual and auditory hallucinations also. He sees and hears somebody who isn't real. The consultant seems to think that this is all part of the ASD but I'm not so sure. I don't believe it is typical for people with autism to hallucinate. He has also suffered from delusions. He is currently taking Seroquel which he describes as 'turning down the volume'

I have a feeling that he might have co-morbid szchizophrenia, but I really hope he doesn't and that all of his disturbed thoughts are due to Asperger's. I'm finding all of this very difficult and have not had a great deal of support from CAMHS or anywhere else recently. He doesn't like to talk to me about any of this and everything I know I was told by other people- mainly my daughter. He forces me to leave the room when he's talking to his doctor about the hallucinations and has confidentiality which I also find very difficult as it limits my ability to help him in any constructive way. He has not told the doctor the full extent of his hallucinations and so I am worried that his diagnosis may not be complete.

any advice welcomed.

Cass

Parents

  • Hi MaryR,

    Thanks so much for replying, I really appreciate you taking the time to do so and sharing your sons story, there aren't many people who understand how distressing it is to watch your child go through these experiences and to listen to them describing it. However, it must be awful for you to also see him upset and blaming himself for losing them - I guess the ones that were nice to him were his 'friends' as he possibly doesn't get that from social interactions with his peer group from what you've said. Does the doctor think it is the meds directly blocking the voices or the fact they've reduced his anxiety that has caused them to go?

    I'm also really interested to understand whether he was prescribed medication on the basis that they thought the voices were as a result of psychosis, as when my son first told me about his voices etc. I immediately worried about the possibility of schizophrenia and went to see my GP. Luckily I've had really good support from my GP and CAMHS (so far!) and from the outset they have said that his symptoms are very definitely anxiety related as he had been experiencing a lot of social exclusion and bullying at school. His anxiety had become so bad that he was refusing to go to school, dropped any activities and wouldn't go out as he didn't feel safe. He also was threatening to self harm/commit suicide.

    We have tried a variety of stategies to lessen his anxiety levels - counselling from a CAMHS CPN, anxiety management group (CBT based), relaxation, art therapy etc. As time has gone on the voices have lessened, but I actually find it a useful indicator to judge his anxiety levels and being able to work out from that what needs to change for him. We did meet with the CAMHS psychiatrist to explore whether meds would be appropriate as the next step to help lessen his anxiety, but we were quite resistant to the idea due to his age - so although it's there as an option it's not something either CAMHS or we think is right for him at the moment.

    Anyway, the reason I joined NAS rather than a mental health forum is because, as I said, it's becoming more and more apparent that the major reason for his anxiety is down to his daily struggle to 'read' peoples comments, intentions and social interactions. We've done an initial assessment and he does score highly on certain aspects of the assessment but an ASD/Aspergers diagnosis doesn't quite 'fit'. While trawling through this site looking for info and comparisons I came across the page about PDA which, having looked at it in more depth, I am convinced is the root cause of his problems and have raised with his CPN this week.

    As far as anger/meltdowns go - although a great deal of his anxiety is school based (he is still in mainstream but very reluctant, poor attendance), he tends to bring it all on home! So we have frequent and prolonged rages over the most inconsequential of things. He can be verbally and physically aggressive towards myself, his dad and younger brother which puts a lot of stress on us as a family and I agree with you saying that everyday I wonder if he will be ok.

    Sorry this has turned into an essay, I guess I'm relieved to be able to offload to someone who's got similar things going on, it's not like you can chat to just anyone about these issues! However, please don't feel you have to answer any of my questions unless you're happy to do so. Look after yourself, Sue

Reply

  • Hi MaryR,

    Thanks so much for replying, I really appreciate you taking the time to do so and sharing your sons story, there aren't many people who understand how distressing it is to watch your child go through these experiences and to listen to them describing it. However, it must be awful for you to also see him upset and blaming himself for losing them - I guess the ones that were nice to him were his 'friends' as he possibly doesn't get that from social interactions with his peer group from what you've said. Does the doctor think it is the meds directly blocking the voices or the fact they've reduced his anxiety that has caused them to go?

    I'm also really interested to understand whether he was prescribed medication on the basis that they thought the voices were as a result of psychosis, as when my son first told me about his voices etc. I immediately worried about the possibility of schizophrenia and went to see my GP. Luckily I've had really good support from my GP and CAMHS (so far!) and from the outset they have said that his symptoms are very definitely anxiety related as he had been experiencing a lot of social exclusion and bullying at school. His anxiety had become so bad that he was refusing to go to school, dropped any activities and wouldn't go out as he didn't feel safe. He also was threatening to self harm/commit suicide.

    We have tried a variety of stategies to lessen his anxiety levels - counselling from a CAMHS CPN, anxiety management group (CBT based), relaxation, art therapy etc. As time has gone on the voices have lessened, but I actually find it a useful indicator to judge his anxiety levels and being able to work out from that what needs to change for him. We did meet with the CAMHS psychiatrist to explore whether meds would be appropriate as the next step to help lessen his anxiety, but we were quite resistant to the idea due to his age - so although it's there as an option it's not something either CAMHS or we think is right for him at the moment.

    Anyway, the reason I joined NAS rather than a mental health forum is because, as I said, it's becoming more and more apparent that the major reason for his anxiety is down to his daily struggle to 'read' peoples comments, intentions and social interactions. We've done an initial assessment and he does score highly on certain aspects of the assessment but an ASD/Aspergers diagnosis doesn't quite 'fit'. While trawling through this site looking for info and comparisons I came across the page about PDA which, having looked at it in more depth, I am convinced is the root cause of his problems and have raised with his CPN this week.

    As far as anger/meltdowns go - although a great deal of his anxiety is school based (he is still in mainstream but very reluctant, poor attendance), he tends to bring it all on home! So we have frequent and prolonged rages over the most inconsequential of things. He can be verbally and physically aggressive towards myself, his dad and younger brother which puts a lot of stress on us as a family and I agree with you saying that everyday I wonder if he will be ok.

    Sorry this has turned into an essay, I guess I'm relieved to be able to offload to someone who's got similar things going on, it's not like you can chat to just anyone about these issues! However, please don't feel you have to answer any of my questions unless you're happy to do so. Look after yourself, Sue

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