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Can I trust my family?

Libris Vexed

I'm 43 and have only just got onto the Pathway. I've been told that it will be months - maybe over a year - before I see anyone. So I looked up what it might entail on the NHS website. It suggested getting someone who knew you as a child to accompany you. I also have petit mal epilepsy which went undiagnosed until I was 20. This meant that my fits exhibited themselves as 'absences' where, in times of stress, I would appear to 'zone out'. Consequently there are massive memory holes in my early childhood. So, it would be a good plan to have someone who knew me at the interview, yes?

The trouble is, I don't trust my family. They care about me, yes. However, they treat any health problem I have as hypochondria - this is why I didn't get diagnosed as having epilepsy until I was 20....and it was only recently, when my sister saw the effect of me before and after my morning tablets, did she acknowledge I had a problem! The NHS don't give out drugs for fun! It's just the way my family are. I just don't think I could stand to try and explain what they'd probably just not be able to comprehend and would dismiss out of hand.

There are possibly two sisters who would not make me feel an utter fool, but one I think would tell the rest of my family behind my back. The other lives 160 miles away and I don't really see as much of her now as she has kids.

I'm not quite sure what to do. I don't know how essential their input would be. I'm also not sure if I want to disclose this with them anyway.

  • in reply to I Sperg

    I loved my family, but they were all taken from this life; one by one. Except my brother, who now lives in Derry. 

  • As an alternative, would it be possible for you to get hold of a questionnaire? There are a number of fairly standardised and detailed questionnaires for people who are going to be assessed for autism and for family members to fill in. Getting one that your prospective assessment unit/clinician uses might be best. That way you could send it to your distant sister to fill in, you could also ask her to treat the situation as confidential.

  • in reply to Sporadic Sparkly

    Thanks. And you raise a good point- their perception of things is lacking. The sister who I might trust is the only one who remembers my eyes rolling up with epilepsy, but she was only a child so had no clue what it meant at the time.

    Everything is a bit new and I don't know what to expect. 

  • Hiya,

    do you feel like a diagnosis would help you? because it's not something that you necessarily need, also, personally I have received no help whatsoever after receiving my diagnosis, I don't regret it because the diagnosis has helped me to understand myself however in regards of support, I have received none.

    sounds like a difficult situation. perhaps message the sister who lives 160 miles away and let her know that you've started the process of an autism diagnosis and explain that you might need someone there with you. she doesn't sound like someone who would say no however if she did then at least you would know. don't worry too much about it as it will probably be a while before it happens, the waiting lists are awful. if you need to know any information on the process and what to expect then just ask, we are all very happy to help.

    I hope it works out ok for you

    Alisha xx

  • This is a tricky one I feel, and I'm hoping there will be other more knowledgeable members that can offer you some useful advice or suggestions.

    I have never had a formal assessment, but from what I have read on this forum it is not a requirement to be accompanied by someone who knew you as a child. However, due to the gaps in your memory, I can understand why it might be useful to have a family member there.

    You clearly have good reason to question if you could trust an accompanying relative to provide reliable information, and also not to discuss things behind your back that you would prefer to be kept confidential.