Reasons for wanting a diagnosis in adult life

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What were your reasons for wanting a diagnosis as an adult and how have you felt your life has changed since getting the diagnosis

Ariel

I went into the reasons in the following thread in more detail: https://community.scope.org.uk/discussion/31589/what-are-the-benefits-of-an-asd-diagnosis-as-an-adult#latest

But, in brief:

- I wanted a diagnosis to confirm my already very strong suspicion, to get rid of that constant questioning voice in my head.

- I wanted a diagnosis for self-understanding and self-confidence. To explain so many things, and to allow me to feel comfortable and at ease with my struggles.

- I wanted a diagnosis so that I could be open about being autistic. I would never have claimed to be without an official diagnosis, but I strongly believed I was and I hated that I felt like I was hiding that part of me. It's rare I ever mention it even now, but at least I can if it's relevant.

- I wanted a diagnosis for the accommodations, both immediate and potential in the future.

How has my life changed? Significantly. Which is odd, because the diagnosis didn't make me autistic. I already was. So originally I felt like nothing would change and I'd still be the same person, but after my diagnosis I learned so much more about myself and my own strengths and weaknesses. I gave myself more accommodations.

But, more importantly, I became aware of how autistic my behaviour was. It was like a screen had lifted and I couldn't put it down again. I could suddenly see my own differences like I never had before - why I walk funny, all of the mistakes I make in conversations, my meltdowns and shutdowns. All things that had always happened, but I'd somehow never even noticed. And that nobody had ever bothered to point out to me, even if they were thinking these things!

My whole mindset has changed. Autism is visible in every aspect of my life now, and I show so many more autistic behaviours than I ever realised. And it isn't that they're new behaviours. I just never saw them for what they were, before.

My only 'new' behaviours are the accommodations I've given myself - I use a stress ball to help when I'm getting overwhelmed sometimes, and have a writing pad to hand for my shutdowns.

When I went for diagnosis I firmly believed that I was almost invisibly autistic and that my diagnosis experience could go either way. Maybe I was masking too well? Maybe I wouldn't be diagnosed because I was so mild? In fact, they had no trouble diagnosing me and I've since realised why! Looking back, I find it so hard to believe that there was ever a time I thought of myself as neurotypical and could see no possibility that I might be autistic, because once you're aware you're REALLY aware, in my experience.

kkeegan92

Totally agree with Ariel. I was 38 when diagnosed in 2015. It's changed my life! It's given understanding to my life and let me be easier on myself and to take steps to make my life easier for me. 

joannarashelle

Agree completely with both @Ariel and @kkeegan92!

The most important thing was to allow myself to be free and not restrict my passions in life, to be kind to myself for once instead of berating myself for being 'different', I've actually started feeling proud of myself for the first time in my life instead of wanting to hide away because now I know why I struggle with overwhelming stimuli and it's not because I'm "over reacting".

 if we on the spectrum have lived in what can be a frenetic noisy aggressive confusing challenging world without knowing why we feel so scared 'freaked out' depressed (over and over I was told by professionals my social struggles were down to depression.. ) and we can survive then we can GET THROUGH ANYTHING. 


In fact I've turned a huge obsession of mine into a career well actually it's more of a way of life hehe.. 
I was told oh so many times not to put animals first, that my dogs got too much of my time my attention.. yet I never knew why I've always felt at ease completely safe around animals yet struggled to maintain this feeling of safety with (some) people. 

I've always rehabilitated and cared for troubled dogs (and animals in general) now I just get paid for it. 
Which is amazing for me. 


So with with all those recently diagnosed later in life, embrace your passions.

It will bring you inner peace HURRAH xxx

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joannarashelle

Well said @DannyMoore! 

bendigedig

I didnt think that I needed a diagnosis.

I'm not sure that if it makes any difference to me personally.

It makes a whole lotta difference to other interested parties though.

I suspect the merits (or lack of them) of a diagnosis are largely dependant on your personal circumstances.  I think its  a case of weighing up the pros and cons.

Predictable outcomes have been people treating me as if there is somthing wrong with me now.  Although I live in a fairly backward, backwoods, backwater so I suppose thats to be expected.  

Speaking from my own perspective.  I dont think that it has helped or bennefitted me in any way.

My wife would probably disagree with me though.

I havent felt the same since recieving a diagnosis.  It has not been a positive experience for me.   

lonewarrior

I have mixed feelings if I were now diagnosed at 54 years old, I am pretty sure I am high functioning autistic and that's fine, it was very emotional when the reality kicked in, the feeling of sadness followed by anger and then crying my eyes out! I had suddenly found out who I am, I had found the reason I had such a bad time in school, I found out why I constantly have to "act" in a certain way to fit the situation. All the strange thoughts and behaviours every second of every minute of every day, learning to cope so that I appear normal. I don't feel I need a label especially as most people who know me have said " I think your right and it certainly explains a lot about you", And here's the BUT, As much as it has allowed me to be me at last instead of trying to be someone else, there are those that come out with the statement "well if you will go looking then you can fit any condition, you should stop reading so much"  and "well I do this or that so I must be autistic also" they really don't get me or it! I don't feel I need to justify it to them but I feel they belittle autism and me, this condition has controlled my life and still does so how dare they snipe at me as if it's a joke or a minor thing. I always assumed I had mild dyslexia but looking back it wasn't. I just didn't understand the rules for reading and writing, I refused to accept it all, once I had been given the help to understand the rules I got extremely angry that they(everyone) had not explained to me how I should think? I accepted the rules and could read and write almost straight away. Only today I told my boss I thought I was autistic! We were discussing why I get so stressed out. I told him all that I do is for my fellow workers and the better ment of the company. I am very passionate about rules, health and safety, and caring about others. He straight away agreed and could see all the quirky things I do are part of being autistic. I think he was relieved as it allowed him to understand me more as a person.he thinks I should get diagnosed.
Anyway I just realised how much I have gone on, sorry I get a bit obsessed and over explain everything, I'm off for a rest, thank you for listening.brian.

lonewarrior

How funny is that? I have just read the link Ariel posted in her post above.her more in depth reasoning for being diagnosed. I thought she was writing my life story? And then coming back to this section spotted her post.

It says " but in brief", 52 lines of writing and my 45 lines of writing to get across a simple answer. Really funny to use so much dialogue for something that could be got across so quickly. Ok so I smiled and feel happy and love that Ariel is as passionate as I am no matter what the subject. I am trying to say it feels good to go on and on, because that is who WE are. And yes I counted the lines and this is in no way me having a dig. Lovely to know there are lots of wonderful caring intelligent people like US. Brian.

Nystagmite

I was hoping that a diagnosis would lead to me getting the help I need. But no, social services are utterly clueless and I was pretty told there's no help for adults who have been diagnosed. But everyone wants me to get back to work. Just how when I can't cope with people, I really have no idea.

Sam_Alumni

Did you read @VioletFenn 's guest post about getting her ASD diagnosis at 46?

Kathy_Bramley

https://youtu.be/4_Bg3upPyuk

Here's an awesome YouTube channel's most recent discussion about periods and autism. Purple Ella's looking into autism friendly ways to manage what might be PMS or full on PDD, but adult diagnosis allows her to see that mood change in the context of her whole garden of emotional and processing and physical life. It might I think be easy to dismiss one in relation to the other otherwise. That way of looking at things which might happen otherwise, without a lens of adult autism diagnosis to look through, might happen out of a defensive mindset that doesn't want to make trouble or go looking for it, which might in the end prevent problem solving. So the autism diagnosis gives permission to accept what is and deal with it, though perhaps we should in an ideal world be able to do that anyway. But that's just my take.  

I also contributed in the comments section there: discussed some of the complicated issues that prevent me going to the GP. 

I am tempted to just copy/paste for the meltdown triggers thread, as it's all relevant! The problem question is about managing increased anxiety and meltdowns and how severe PMS/PDD is tied to ASD, whether it's a separate thing but extra stressor when it's theres, if PDD and PMS are more likely with ASD, or even so likely as an indicator of ASD that hasn't been picked up on before, though that's probably not true. 

Kathy_Bramley

Nystagmite said:

I was hoping that a diagnosis would lead to me getting the help I need. But no, social services are utterly clueless and I was pretty told there's no help for adults who have been diagnosed. But everyone wants me to get back to work. Just how when I can't cope with people, I really have no idea.

That sounds like the experience I expect and have heard of, familiar in some ways from my experience of PND and social care, they really didn't know what to do with us except offer respite, benefits help, censure and parenting support and it was hard to find the right kinds.
That was us/me without a diagnosis and with children with different and enhanced level of need each. It seems like there's no impetus to get right to the bottom of things and see you right. Maybe it's my cynical inner voice that's singing to me now: it's a bit like Ace of Base 'I Saw The Signs', but not a matter of nobody dragging you up to get into the light though it can involve considerable questioning and self doubt about where I belong. If the implied answer of the song is that of resolve and dragging yourself up, I am not entirely sure that works, and I expect few of us here are, though not entirely against the ideal of self starting empowerment and efficiency either!!  Can't always tickle yourself, or find the strength or "right niches"* alone, but there's forces at work and reasons why the process of mutual responsibility and aid in society is complicated! And it's not all about ambitions and our place in the sun either. But I don't have a diagnosis. And I have heard that our local adult autism services are quite good. For some people. 

I think it's very patchy, depending where/who you are, your story and needs. And what the services locally are doing. That doesn't make it any better and I am really sorry you've been getting a very raw deal. For people looking for reasons for adult diagnosis I still think there's some reason to hope! 

I don't think Corbyn et al will have a magic wand and iron out so, a need for expectation management. 

*people always used to say that: Kathy - you must/I hope you find your niche: friendly adults using words of confiding encouragement, tones of frank conspiratorial incitement to take on the world and win. It was nice in a way, but too utopian for something they ostensibly left up to me. As the person struggling. In the end that's acted as a way to let them off the hook emotionally and me the more embarrassedly floundering and isolated. I know it's a difficult thing to help everybody and maybe me especially but if they wanted a diverse Utopia of mutuality and social justice, as many of them ostensibly did, why did they not work with me on that goal at a more involved level, stir the pot deeper and more effectively!? All these expectations and questions sound embarrassingly entitled and bitter if I take that sort of angle on them, but I don't mean to be. I know others would encourage me fromna social justice and self care angle not to worry about that. I don't know what's fair.