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Do Not understand what is going on!!!

mum will sort it

My daughter has suffered with alot of problems since an early age - into her teens she's suffer with Anxiety, Depression, Self Harm Eating disorder and list could go on.

Shes been under Camhs on and off for years and despite my requesting they refused a Diagnosis test for Autism, in spite of the fact they failed to diagnose her brother through his years in camhs - (he was finally diagnosed at the age of 22 a couple of years ago)

I finally went for a private Diagnosis (2nd Opionion) and thier conclussion was Pervasive Development Disorder - Autistic Spectrum Disorder - ICD10 F84.0 He explained it to her as a HIgh Functioning Autism, similary Aspbergers. she cam a way happy with a diagnosis.


On the reciept of this information her Camhs consultant has said yes they were aware of some Autistic traits - but wanted to treat the anxiety, depression and Eating disorder as these where impacting on her life,

My daughter has always just asked that they tell her her whats is wrong with her and does she feel like this all the time - I just want to know is autism, bipolar or what- 

She is now going tohave a test to see what her stregnths and weakness are - she just want to know what to day when people ask without stringing of a load of disorders.

She has now become confused as he did not give her a label that she wants - How can i explain this to her so she understands.

  • I'll add my bit here and hope it helps, I can only try Smile

    What your daughter needs to grasp is that 'behavioural' difficulties have many causes and therefore many names. She needs to understand that ASD alone covers a great variety of behaviours, and that many of the characteristics can also be properly diagnosed as 'stand alone' issues, and don't always add up to the full diagnosis.

    That's why it is important for the professionals to gather as much information and observation as they can, and particularly with girls because they are so difficult to diagnose anyway, compared, apparently, to boys. It seems that only an NHS diagnosis is acceptable to the authorities - I've seen other stories about this.

    She certainly deserves an answer and of course she is distressed by having to wait. The same thing happens to many people, and we can undertsand how she feels. It's like being dumped in the middle of a desert, with no map and no landmarks, nothing to guide you - what do you do, where do you turn? It's horrible suspense for her.

    What she most needs is the right answer. Again, many of us have tales of constant misdiagnosis, and we don't want her to go through that either. Unfortunately, the right answer takes time, we would willingly change that if we could. In the meantime, we are here to help, support and understand - she is not alone.

  • Hi,

     It does sound pretty poor that CAMH's thought it was ok to treat the symptoms, without truly looking at the cause! I suspect finance may have been an issue here. Pretty poor that you have to get an independant assessment, especially given her brothers history.

    The Key, now you have a diagnosis, would be to look at strategies to help her cope. It sounds like your CAMH's unit are not very clued up.

    Once you realize that the ASD is causing the anxiety, depression etc it can make it a little easier to bare, but it is very much down to the individual and will be markedly influenced by the level of support she now receives. For me, it's been life changing, but she needs to keep a positive mindset and use this new found knowledge to work on her weaknesses, in order to build on her strengths.

    As an Aspie you suffer with a life-long feeling that you don't fit. This is constantly reinforced by others treatment of you. Once you discover why it is you don't fit, it's time to look at your own rules. She is an Aspie and in being so she belongs to a very unique tribe. A tribe that thinks and sees differently to NT's. She finally belongs and may need time to meet other like-minded individuals, to realize she's not alone. She's in good company, with many famous people diagnosed with the same condition. But it's not so much the label as what she does with the information that's important.

    Part of being diagnosed with ASD is also about acceptance & coming to terms with a diagnosis can take time.

    If, as I suspect, your daughter struggles with certain everyday aspects of living, then contemplate looking at 'Living well on the spectrum', by Valerie Gaus. It's a positive book that looks at the weaknesses and offers strategies as a building block to being able to circumnavigate those weaknesses.

    To simplify, the label is ASD, but it's an unbrella that encompasses a whole host of other co-occuring conditions. No two people are the same and that's what makes her condition unique to her.

    Approached in the right way, her diagnosis could be life altering for her, in an extremely positive way, but she will have to work at that.

    Hope my ramblings make sense.

    C