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Advise guidance and understanding please

Jon

Hi, I am a single dad who had recently had to give up work and care for my 14 yr old daughter who was recently diagnosed with asd a few months ago. She can't spend time with her mum who is not equiped to deal with the situation. Prior to last year my daughter D was an outwardly confident, creative and super gentle girl. A girly girl (her words) who loves "bun buns" and guineas". She enjoyed her small and nurturing primary school and looked forward to secondary school. She struggled almost immediately but outwardly seemed to cope well, her teachers would see a popular well liked engaging girl who was gifted at art but struggled with comprehension of science and appeared dyslexic. She would fall apart when home with her mother who become beside herself with worry and concern. Fast forward 2-3 years, effectively a change of 3 schools and D has crashed. She has developed osd like behavior in an attempt to ward off unpleasant thoughts and attempt to take some sort of control. This has shrunk her world where some of the menial tasks of eating, brushing teeth or getting into bed are sometimes impossible for her. She equates a negative thought as tainting the thing she is doing. If she has a horrible thought while showering the shower was "wrong" and will taint the rest of her life until she can shower properly. Properly will mean without a horrible thought or memory. Impossible if you are trying not to think of "pink elephants". Utterly exhausting and frustrating for her.

We are in the initial assessment phase of a  cahms psychologist, we see a private therapist and I have just started to get help for myself though an organisation which offers taylored help, D has started seeing a local esteem team mentor and I have reached out to local home ed Facebook communities. Despite this I am feeling utterly alone and overwhelmed. The crisis seems to be intensifying, as if the flood gates have been opened. Female autism seems incredibly wide ranging with personal experiences online quite different to what D is experiencing. We have been advised to learn about autism, but where to start other than here.

  • in reply to Jon

    They’re only negative ways of trying to cope if they don’t work or don’t bring her closer to some sort of better solution.

    I don’t know how it was with her mum but I would imagine taking to to research her mum’s condition, if that’s something she spent a lot of time doing, will have been helpful to her emotionally. To Help her try and understand why her mum is the way she is, to predict how her condition might change, also I bet she wants to help, to fix things, that’s not a bad thing to want. I’m told a surprising number of autistic people pursue careers in medicine, essentially a job where you fix people.

    our brains feel compelled to try to fix everything we’re emotionally invested in and our brains just never stop. At least that’s my experience.

    as for a chaotic group of girls isn’t it quite normal to want friends and to seek friends who have what you wish you had. Maybe she wishes she had the courage to be a bit more ‘chaotic’ herself. Especially if that lifestyle brings friends and boys and fun times.

    but maybe when she tried it it all goes wrong? Isn’t it quite normal to admire those who do so easily  what you find so hard?

  • in reply to Peter

    Hi Peter, thankyou, the swapping school thing was always a mistake and I was never supportive of it. I could discuss that for hours but it is done and was clearly disruptive. The ocd is not new however and according to my daughter started maybe 8 or 9 years ago in response to worrying about her ill mother. A control thing, started as a way to help her mum. Anyway, let's start with that, D finds bullying and overly dominating personalities baffling. Last year she was attracted to a chaotic group of girls with whom she spent a fair amount of time with. What with her mother not being able to cope and an utterly confusing personalities what is the relationship between between autism and negative ways of trying to cope?

  • I guess we could bombard you with questions, like why the switch between the 3 schools, or what's this new 'ocd like behaviour', but since you say your main hope is to learn about autism and what it's like to be autistic why don't you ask us a few questions?