Late Diagnosis and Outcome

Hi Lee, I've been recently diagnosed at 55 years of age. I'm pleased as it has provided rationale, explanation and relief.

It has left a bit of a feeling of "what now?" Nothing really changes for me.

I was hoping for some degree of explanation; I've just been diagnosed as autistic. I was expecting a Level 1 or some further pinpointing to where I am on the spectrum. My paranoia has kicked in and I am now thinking am I really autistic, or have they taken an easy option because of my age, and little supportive childhood evidence other than from me. Is that usual to have no level?

I would dearly love to speak face to face with other high functioning autistic adults to share experiences and see if traits are similar, but I can't see that happening.

Best wishes.

Yes exactly.

I've had plenty of people putting my differences down to me being 'stupid', or 'lazy'. I guess that's just proof that even they couldn't figure out what was 'wrong' with me, so they just went with 'she's so stupid'.
I've been called all sorts through my life, a classic case of bullying because you're autistic I suppose, I read about it a lot & it hit me quite hard when I realised that this was probably one of the main reasons I was targetted so prolifically by bullies all through my young life, & sadly a few of those bullies also included family members.

But yes; reading about others' experiences, watching videos & having people explain how they deal with things, what they find difficult etc has helped immensely! :)

& yes I also share your frustration in knowing that this is something that I just cannot control no matter how hard I try. I definitely still need to properly accept myself & my limitations, & start focusing more on the positives rather than the negatives.

It's been reassuring when reading about how other people struggled and put it down to them thinking they're thick or stupid. Ive given myself so much grief for not grasping what others do with relative ease. Knowing it's beyond my control helps in a way but its still frustrating. 

Hi.

I was diagnosed in March 2017 (only 5 months ago).

I've struggled all my life with being 'different/ weird/ *insert other degrading insult here*'.

It got to the point where a few people in my life put it down to me just being 'stupid', or at times I was just 'trying too hard to be different'. I have an interest in mental conditions anyway, & I happened to stumble across autism in my research many years ago. As most of the information concerned high end autistic children, I didn't think much of it. It wasn't till a short while later that I watched a programme that highlighted the condition on the more high functioning side. I even joked at the time about the similarities between me & those kids, & a short while later I did the online ASD test & scored rather high.

That was when I realised that there was a very high possibility that I had ASD. I researched more into it, & hearing people actually talk about their experiences really hit me like a ton of bricks. So much suddenly made sense, it was like being given a big book of answers to the questions I had through my life, why some things did or didn't happen. Why I struggled so much with some things but excelled in others etc.

I eventually pushed to get a diagnosis because certain people in my life were making things difficult, & I was sick of trying to explain myself. I knew if I had an official diagnosis, then people would actually start taking me seriously.
I had to wait an entire year for my appointment. During that time, I researched more, read more of people's experiences & watched more videos. I lost count the amount of times I was left in floods of tears as I watched videos of people explaining their condition, how it affected them etc. It got to the point where I knew I would just be going to these appointments to get it confirmed & have it placed into my medical records.

But; funnily enough, even when it was finally confirmed, it was still incredibly overwhelming.
I had people completely against me seeking out diagnosis, I wasn't given much support at all during that year as I waited. I felt so alone, & frightened. I was full of doubt, anger, fear. It exaserbated my depression something chronic, & having those two psychiatrists say to me that I was definitely autistic... It felt like an alternate reality for a few moments. I struggled to keep my tears at bay, & I felt such overwhelming relief.

That being said, I am still discovering & learning things about myself. It's only been a few months, & even after all the research I did, I'm still coming to terms with a lot of things... I'm also cutting myself some slack & not being quite so hateful to myself anymore. 

I know it's going to take time, & I imagine it's going to take quite a while for you too. Either way, good luck with your journey :)

It's interesting that you say you wanted to be yourself. At the moment I'm not sure who I am anymore. I've spent so long trying to be what people want me to be to 'blend in'. Part of me thinks I've got this far in life, why change now. But another part thinks you've struggled most days to get through the day when others seem to drift through with relative ease. So why keep up the pretence? 

I've not told my colleagues, only my manager. That's mostly to let my employer know I more than capable of doing my job, but just give me the space in which to function - you'll get more than your money's worth if the conditions are right. I don't want my colleagues to know in case they think I'm suddenly getting preferential treatment or I've changed and suddenly developed a sympathetic disability overnight.

I'm still trying to come to terms with it. Having the diagnosis has been a mental whirlwind.

Hi Lee

I was late diagnosed at the end of last year, aged 62.

Although I was expecting it, and 'needed' the diagnosis to make my employer take my needs seriously, it still took a lot of coming to terms with.

In one way, I was quite amused by it all.  To me, it meant I could finally 'be myself' in a lot of things, rather than acting.  And I must say I have given up a lot of the acting I used to do, with the result people are now saying I have 'changed'.  In other ways, there was a sense of regret for what might have been had I had the diagnosis years earlier (notwithsdanding that autism was not really understood until fairly recently, and it is still not understood in the wider world.

I also am getting certain allowances at work.  It took a couple of months before I was confident to 'come out' about my 'condition'  I thought hard and realised it is not anything to be ashamed of,, and in a way, I am quite proud that I am 'different'.  To me (and I think  autistic people in general) it is neurotypicals who are strange, its just that for some reason we are thought of as the strange ones.  It is dealing with the ninety nine per cent of neuotypicals that causes the problems.  I am more convinced than ever now that it is NTs who require the support workers!  They have very strange ideas and then wish to inflict them on me and others like me,

Even though I now have a support worker for a couple of hours a week, my employer is still under the impression that I can be 'cured' and that is a mental health condition.  True there are mental health conditions involved with me, not least severe chronic anxiety, but they are under the impression that my autism has some sort of switch which just needs fixing to enable my autism to be turned off.  And this is my greatest challenge in the workplace now.

I think the greatest help anyone can give an autistic person is to allow them to be themselves, not try to change them into someone else.  And also the ability to listen to the autistic person - there is a whole lot of information and experience inside me .

I don't want to take over the world.    I just want to be left alone to do my job (and anything else) without interference.  Unfortunately, the way society seems to be organised nowadays means that any ideas of different ways of doing things are looked on as a threat to the order of things.

Hi

It's interesting to see how people's situations can have an influence on the nature of their ASD. I suppose it's something to do with the Too Much Information or sensory overload. I know from experience I can be ridiculously OTT with what others would consider petty and insignificant and be remarkably chilled over more serious issues as I can see through the crap and think through it logically. But it goes to show that one of the criticisms of autism is a lack of empathy/sympathy/emotion is complete rubbish. I can be too emotionally involved I things especially when it comes to family. As for people who don't recognise an illness unless it physically obvious, they just frustrate me. The brain is still a part of the body and just a few minor chemical imbalances or faulty wiring can have a massive impact on someone's life. It took years to get my dad to understand why his nephew behaved the way he did and he was even more shocked when I told him I was diagnosed too recently.

Hi Lee, my partner is 51 and his psychologist wants to screen now his daughter has a diagnosis. He already has ADHD and Anxiety hence the referral to psychologist in the first place.

I'm "out" as a disability advocate with a DCD diagnosis...most people have no clue what DCD is so in some ways it's easier because there is no associated stigma.

I have pretty much already accepted my partner has ASD...but I also know that some of his problems arise from 18 years of an abusive relationship with the mother of his children and the necessity of ongoing communication with her until SD16 turns 19. The 2.5 years of negotiation and two family court appearances to get SD16 assessed for ASD (SD16 wanted the assessment, her mother doesn't believe in these hidden disabilities) was enough to send me up the wall and I'm not triggered by her like he is. He spent 6 hours yesterday trying to send a 4 line email that should not even need to be sent if the situation was somewhere near normal.

So I guess I'm saying that a diagnosis for him might have utility if it gets him more assistance and understanding, and given how it's common for him to find people assuming that he must have done things to deserve the ongoing abuse, it might be easier for him to say he's got ASD rather than residual trauma from domestic violence.