New diagnosis with ASD since January 2017 — Scope | Disability forum
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New diagnosis with ASD since January 2017

Hi I was diagnosed with ASD as adult this January 2017 as I have not be offered any support just told read a book off the adult autism advice group in my area. 
My neuro rehabilitation neurologist had a got at me in clinic yesterday of my behaviour which I took a list to her what was consern over my care. Which she told that it not down to my autism but I sat last appointment wait for which couldn't be  had to come across from the other hospital and I was kept on being told that she was coming and she was delayed and then I was told that she wasn't coming across and I was asked if I would see her registrar he refused to do my care and then my GP has also questioned  Who is do neurology care you are really care and I said I I'm doing it myself and she said what is happening in my treatment plan and what is happening my autism my GP is concerned as well but she doesn't know which way to turn to.
 Also my new rehabilitation consultant is using my autism against my general complex care needs which they are not getting treated and she is not believing that I had a scan on my foot for a pain condition she is she saying it's not that she seems completely different.

 on Friday I was in tears in clinic when she had a go at me and she tell me that is because her only and know rules and if I didn't do them she will not do my care and she would pull out all my psychological care as well to .

 I feel so scared to even open my mouth now and teller anything and not knowing what her reaction reaction is in my care 


  • Nystagmite
    Nystagmite Member Posts: 603 Pioneering
    Don't expect any help as an adult. I was only offered support via a group ran by NAS which is completely inaccessible. Social Services were mentioned too. But they claim I don't have Autism and ignore my needs. They also think it's appropriate to take me to places that would cause pain. (too much noise is physically painful) They refused to work with me when I refused to do things that were painful and wouldn't turn up to things with 30 minutes notice - I need at least 24 hours and they know that.
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    The user and all related content has been deleted.
  • Nystagmite
    Nystagmite Member Posts: 603 Pioneering
    I was told more than once the reason why I can't get help as an adult, is because I should have learnt to adapt by now. What I should have adapted to by now, I really don't know. 
  • Joannadaviesd0
    Joannadaviesd0 Member Posts: 6 Listener
    edited August 2017
    My difficult thing find hard with my autism is :- 
    1. Sensory overload to lightning and white broad
    2. Sensory to some foods
    3. Can't understand another people feeling and can't when upset them as well.
    4. Social overload 
    5. Several emotional and behaviour challenge
    6. People overload as well
    7. Cant take lots of information in at one time which get very uncertain what going on as well.

    Everyone put me a routine what they went in health professional and told off like child when can't do it and total on Friday that my neuro rehabilitation consultant that I don't do my summer routine but I am quite pain at present suffer for cluster headache and inflammatory in feet which very painful as well too.

  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    edited August 2017
    The user and all related content has been deleted.
  • VioletFenn
    VioletFenn Member Posts: 124 Pioneering
    Hi @Joannadaviesd0 and welcome! I can totally see why you're finding things difficult right now. Is there anyone you trust enough to use as an advocate? It might help to have someone with you when you talk to doctors etc because firstly it means you have someone on your side in these situations and secondly they are a witness to what is said to you - they can back you up if needs be and might also remember bits of a conversation that you may have forgotten. 

    You don't have to cope with autism in any way other than the way that suits you. Yes we all have to fit in to society to a certain extent, but as @DannyMoore
    has already pointed out we all do things differently (and that applies whether autistic or not). 

    What do you mean by 'routine' - is it a set of appointments, or physical exercises? I do think that routines help most people (and again, including those who are not autistic), because they simplify life and make it easier to ensure that things get done. But you shouldn't feel obliged to set everything in stone and never do things differently - it could be something as simple as writing a list of things you need to get done each day and ticking them off as you do them. I wouldn't get through my days without a list!

    ASD advisor, Scope
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
    Hi @Joannadaviesd0 did you see the Chris Packham Autism show? We are talking about it here, come let us know what you thought.
    Senior online community officer


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