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Don’t know what to do to get support

NAS78860

Hi, I don’t know whether you can help or not.
I think I’m autistic. I want a diagnosis to help me manage this. I’m 43. I’ve struggled all  my life and as more women are speaking about their experiences, things are slotting into place me about why I’ve never fitted in, why I struggle so much at normal things, despite being “successful” in some ways (I have a PhD). 

I don't know where to start. I tried to raise this with my GP (who told me I couldn’t be, because I liked going to the cinema by myself).  I feel awkward, embarrassed even, to raise it again. I can lay out all the things I’m terrible at, the sensory overwhelm when dealing with people, my confusion about why people treat me so differently, why feelings grab me and take over me, and other things on paper but I don’t think I could even vocalise it if I wanted. Nothing would come out of my mouth. 

It goes way back - bullied at school, didn’t understand how to dress (still don’t really, styles/colours don’t make sense), acutely sensitive to social interactions in some ways (I can read power dynamics), except those that involve me, as a child, got carried away and didn’t know how to take turns talking (I still have to work really hard at that).. I don’t know if this is stupid but I tried as many online tests as I could find - ones that looked half credible anyway. All came back strongly. 

I tried opening up to friends about this, I get told that life is tough, everyone struggles, and I should try  to develop my social skills - maybe I’m just hopeless. But I want to understand myself, develop strategies, help myself so I don’t have to feel so reliant on my family to plug the gaps, so I can understand.

Reading about adult female autism has given me a profound sense of recognition and relief. I just don’t know what to do now.

  • call your local authority and self request a needs assessment, they legal can not deny you a needs assessment. should result in support provided. going to a GP is useless.

  • in reply to Dawn

    Thank you all so much. Dawn - I can't thank you enough. I've been coming back to this thread a lot over the past week. And been doing a lot of thinking. I've done the AQ50. I score highly. 

    I know I need to do something about this and I've found the advice here invaluable, honestly. It's good to know I have options. And good to know what they are. I'm going to write a letter to the GP but I think Dawn - yeah - you're right - this might have to be a private route. As I am functioning - sort of -  as in I have a partner and someone to support me through it all - sort of - no way my GP is going to back this.

    So many pieces fall into place as I read more. But then I think about how my family (parents, sibling) are going to react to me seeking a diagnosis. I think they'd prefer me "awkward", "difficult" and "different" (which they've called me - though I've had "disabled personality" before too :/) to autistic. Maybe I'm keeping this to myself. 

  • Hun, you got a range of choices here depending on your circumstances.

    A) You can self-identify and leave it at that. There's nothing stopping you jumping right on in here and now to research your autism, test out ideas like energy accounting for yourself to see if it makes life a tad easier and leaning on us for answers to your questions and moral support.

    B) Never mind your GP, s/he clearly hasn't had enough training, and go for a private diagnosis - I know not everyone can afford it, but I recommend the NAS own Lorna Wing Centre. They are experts in the subtler, female presentations. They diagnosed me. I couldn't wait 2 years on an NHS list.

    C) Go back to that GP or ask another GP. I wrote to mine rather than have the discussion. I detailed how I thought an assessment would benefit me, detailed the things that made me think I might be autistic and enclosed the online AQ50 I'd done. If you get referred for an NHS assessment, you'll be in for a long wait, mind.

    Whatever you decide you deserve to be the best most authentic you there is. You deserve to live comfortably in your skin. 

    For what it's worth, I was bullied at school too. The head blamed me for not fitting in and left the bullies unpunished. Yeah well, you know what? They got pregnant at 16, I got a degree and a string of post-grad quals and a career I hope made other people's lives better. Being valuable and being true to yourself isn't always about 'fitting in'.

    Hug across the ether...

  • NAS78860 said:
    I don’t know if this is stupid but I tried as many online tests as I could find - ones that looked half credible anyway. All came back strongly

    Not stupid at all. We've all done that. Be sure and try out the AQ50. The shortened AQ10 is the one the NHS uses to screen for thoes who may need assessment.

  • NAS78860 said:
    my GP (who told me I couldn’t be, because I liked going to the cinema by myself).

    Your GP knows nothing. I like going on holiday, to the zoo, art galleries and doing all kinds of stuff by myself. That very lack of need of a 'companion' to do and enjoy stuff is in fact indicative of the fact you might be on the Spectrum. 

    It's an extension of my classic autistic behaviour as a baby/ child. I actively didn't want my mother or other children to play with me. I was happiest entertaining myself in my room.

  • NAS78860 said:
    but I don’t think I could even vocalise it if I wanted. Nothing would come out of my mouth. 

    I've written a letter to my GP before now.  Worth a try?

  • I think that so many people already know they’re autistic before they get a diagnosis the diagnosis just confirms it. You’re friends are misunderstanding - autism isn’t just ’struggling in the way everyone struggles’ - it’s much more than that. I also feel that I need to find strategies to help me cope better with life - because at the moment I’m not coping well at all. I’ve just about coped for years but it’s getting harder. 

  • Hello ,

    Thank you for sharing this with the community. You may like to look at our information about autism spectrum disorders: 

    https://www.autism.org.uk/advice-and-guidance/what-is-autism 

    If you were interested in finding out if you are on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one: 

    https://www.autism.org.uk/advice-and-guidance/topics/diagnosis 

    Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: 

    https://www.autism.org.uk/directory 

    All the best,

    ChloeMod