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No help since diagnosis

Clarkie

Hi,

Not sure what I'm asking for here, but I needed to reach out. I've been diagnosed with both ADHD and autism for a while (autism about 3 years, ADHD about 1). I'm 57, female and not medicated (ADHD diagnosis was most recent and although it was a while ago I've still not got to titration stage yet).

I don't know who I am. I've masked so successfully all my life (without knowing it was masking, just thinking it was trying to keep up with others) that I do not know where the mask ends and I start. I've tried to work out who I am since the diagnoses and all that's appeared is more confusion.

I've had no help or support since diagnosis either. After my autism assessment I was sent a bunch of photocopied info sheets, where it turns out most of the groups and support listed no longer exist or are suspended because of funds. There is no diagnostic team. The only thing on offer was a 6 week online course which turned out was aimed at parents of autistic children. and just explained what autism was (thanks, I can google that myself), so I left that.

I feel I am drowning more than I did before. I expected there to be a grieving and shock process, but I feel worse off now than when I was clueless about my diagnoses. it feels empty and alone.

Has anyone accessed anything useful in their acceptance and unmasking journey that perhaps I could look into? I realise I'm going to have to be proactive: no one (in the NHS) is going to actually supply any help.

Parents

  • Personal finance is compounding a lot of stresses at the moment.

    I am having this exact same issue, I say issue its more like my expectations of what services are there differ from the reality. Which is near zero for most people. Long term support for autism does not seem to exist really unless you are severly impaired or handicapped and require a carer. This seems to be the same with financial support, the tiers are ofset so only those in the most difficulty get help. Which I am ok with too. 

    I have found just continuing as I was before, not dwelling too much on my 'new' diagnosis helps. Obviously there are some things I need to sort out.  The expectation from services in the UK is that they will act immediately, I noticed in the news recently there has ben an overwhelming influc of new ADHD diagnosises, when they are already stretched. In some ways finding the information my own way suits me.  

    Mostly what I am brainstorming about seems to identify what I suspected, severe underhand discrminination in the work place and abuses of power, taxes and benefits. I'm basically not welcome in offices because of the type person I am (one who identifies who the poopheads are), but thats ok because everyday my life is enriched by not having to work with rude unhelpful selfpromoting people!!

    Expectations get in the way. Self sufficiency and independence got us this far. What matters is your network closest to you and the information you find that you see as relavant and inspiring to living the best way you can,

    I really think also that the misinterpretation by service providers is about what people with autism actually need. Also the fact that noone has really asked and there was no follow through after the diagnosis - by this I mean with partner services and teams.

Reply

  • Personal finance is compounding a lot of stresses at the moment.

    I am having this exact same issue, I say issue its more like my expectations of what services are there differ from the reality. Which is near zero for most people. Long term support for autism does not seem to exist really unless you are severly impaired or handicapped and require a carer. This seems to be the same with financial support, the tiers are ofset so only those in the most difficulty get help. Which I am ok with too. 

    I have found just continuing as I was before, not dwelling too much on my 'new' diagnosis helps. Obviously there are some things I need to sort out.  The expectation from services in the UK is that they will act immediately, I noticed in the news recently there has ben an overwhelming influc of new ADHD diagnosises, when they are already stretched. In some ways finding the information my own way suits me.  

    Mostly what I am brainstorming about seems to identify what I suspected, severe underhand discrminination in the work place and abuses of power, taxes and benefits. I'm basically not welcome in offices because of the type person I am (one who identifies who the poopheads are), but thats ok because everyday my life is enriched by not having to work with rude unhelpful selfpromoting people!!

    Expectations get in the way. Self sufficiency and independence got us this far. What matters is your network closest to you and the information you find that you see as relavant and inspiring to living the best way you can,

    I really think also that the misinterpretation by service providers is about what people with autism actually need. Also the fact that noone has really asked and there was no follow through after the diagnosis - by this I mean with partner services and teams.

Children
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