Recently diagnosed: struggling to accept

Wow this hits hard. I was also one to laugh and joke at how 'lazy' I was, as an excuse not to think about the real reasons behind the 'lack of care'. Thankfully I don't have my school reports to hand, as they all say something about not living up to potential.

I don't have videos but before I knew anything about autism I can remember looking at my middle school reports and laughing at how lazy I was.

A few weeks before my first diagnosis session I looked at the reports again and I burst into tears.

"Greg is a daydreamer and I feel he will get nowhere if he carries on like this"

"Greg cannot concentrate and will have problems later on in life"

"Greg is a nice boy but tends to be in his own world and not concentrate with his work"

This is good advice for me too. Thank you - it's really helped me.

I know autism is not a disease, I know it's not a source of shame. There is, however, a need to be cautious who we disclose it to because we cannot know how the other person or organisation is going to respond. Not everyone will respond positively (some bully us and some abuse us) and it's really important to consider that if your livelihood or your future treatment or care is at stake.

The OP is recently diagnosed and struggling to accept (and I am similar) we are both processing the information.

I left off posting my reply because I found your response really angry and upsetting. Unfortunately, I seem to have a history in life for saying the wrong thing and being called 'negative' if I offer a different view from the norm. I was reluctant to post anything again after this because it just triggered memories of being controlled through being silenced.

I am sorry if I upset you. I regret it upset me too.

It’s always hard when you have to deal with imposter syndrome after a late diagnosis. Do you happen to have access to any childhood videos? This helped me get over mine instantly. It was very obvious when I saw my unmasked, raw self. 

if you don’t then I hope you find your peace eventually. It’s completely normal.

Hello

I was diagnosed a few months ago at the age of 55.

For most of my life I have felt there was something wrong. All my friends in middle and high school were getting girlfriends and I wasn't. All my life it has been the same; no girlfriend. No sex either. I've always wanted either but preferably both. Before being diagnosed I felt it was just bad luck and hopefully things will change but after, it has now told me why and it is not being unlucky but it is me. I now don't like me. In my mind it is telling me to give up trying for either but I am struggling. Sometimes, such as now, I feel I cannot cope and end up scouring the internet hoping to find answers. Hence finding this forum

Thank you to everybody who has taken the time to reply and offer advice. What a wise lot you are! I think I naively thought I would just get the information and move on when something as big as an autism diagnosis would take some time to get used to. I’ve been at work again recently and also spent yesterday at a noisy tourist attraction and things are starting to make a lot more sense!!! 

 Thanks again 

I am also at the same stage. I was diagnosed 7 days ago and I'm waiting for the report/feedback meeting. I'll send you a friend request so you can pm me if you want. But try not to obsess over it, the best thing is probably to distract yourself with something else while you process the news.

The autistic spectrum covers many different levels and different characteristics. You might experience some aspects a lot but others barely at all. This is true for me.

Yes I can as had a private assessment earlier this year. There's an element of.. I felt the assessors maybe made more of some things than I thought. ..but I think they need to show evidence you meet the criteria - they know what they're looking for. Also I was just over the line on the ADOS  (but this is based on observable behaviours, it doesn't show wholly what's going on inside). I also can't relate to a lot of stuff people talk about themselves being on the spectrum so that sometimes makes me doubt myself. I do feel I have been dealt a fairly good hand in order to have a good life.   I doubt my diagnosis a lot...usually when things are going well. However,  life continues and there are days or situations where I can see myself, as clear as day, that I'm autistic. I think our traits are fluid depending on situations and what's going on. 

Hello,

It sounds to me like perhaps your mind just needs time to process all this, and maybe it's OK to let yourself ruminate and read things on the internet if you need to.  (I'm no psychologist - feel free to disregard this!)  I haven't yet been diagnosed, because I'm still waiting for an assessment, but a few months ago when I first started to strongly suspect I was autistic (after having suspected it for several years), I did go through a period where it was difficult to think about anything else - it was difficult for me to work or to function much at all.  But now I feel a bit calmer and am able to focus on other things again.  I think perhaps I was just processing it all, because it was a major thing to discover in my late thirties that I'm probably autistic.  

So, I don't know if this is good advice or not, but based on my experience I would suggest to allow yourself to research and think about it a lot if you need to do this.  Over time, as you observe yourself in everyday life, you may well see confirmation of the diagnosis.

Ouch! I feel suitably told off.

I accept that some people feel the need to 'celebrate' their neurodiveristy. I don't. Celebrating and rejoicing seems hollow and infantilising to me. I know from experience that having autism isn't always a 'good thing' in every setting - we / I can be hard work when we get going. Perhaps this is an example of the 'rigid thinking' we hear so much about.

If someone disagrees with me that's fine. If you think I have a negative attitude that's fine too. My opinion is just that, my opinion. It doesn't make it less valid or less true for me (or you or anyone else) because it's 'negative'. It's just a different voice that would still like to be heard and acknowledged. I can acknowledge you have a different opinion to me - it doesn't mean I must agree.

Pegasus said:

Rejoice / relief: I don't understand this comment.

Autism is not a disease, nor is it a source of shame. Many people would and do celebrate their neurodiversity—and to celebrate is synonymous with to rejoice.  Not that it matters, but there are many people who would not accept nor recognise the negative attitudes towards neurodiversity implicit in your response to my comment.

It's not daft. It is, however, pointless and self-destructive. 

I did not reply to a post you made nor was I seeking your agreement. So, whether you agree with my thoughts or not is irrelevant to me.

Let me clear up a few points that you have clearly misunderstood from my comments, or voluntarily chosen to misinterpret. I suggested that the poster might want to thank and appreciate 'themself' for waiting for so long and for paying for a private assessment. I made no value judgment on choosing a private clinic over the NHS. You may want to re-read my post, or not.  In addition, I cannot begin to imagine what is in your mind that would cause you to mention awards and select clubs.  I suggested that after twenty years of suspecting autism, the positive diagnosis might come as a sense of relief, and as an occasion for celebration. That's a perfectly valid response to a diagnosis of autism, especially after such a long period of time.

Autism is not a disease, not is it a source of shame. Many people would and do celebrate their neurodiversity—and would not recognise the negative attitudes towards their neurodiversity implied in your response to my comments.

Have a happy life. 

Thank you NAS75775.

I always thought relief would be my reaction but that was very fleeting! 
Take care

Yep.  This is me, relating(!)  Similar story.  I am also new to it so I have no words of wisdom or advice but just wanted to stick my hand up and say you're not alone in that reaction.  We all react differently, it seems.  A few days ago a young poster described being 'relieved', which is definitely not my reaction.  Wishing you well.  

☕Tassimo ☕ said:

This should surely then be a moment for you to rejoice?  If you have suspected you were autistic for the last twenty years, does it not follow that receiving a positive diagnosis after such a long period comes as momentous relief? You've waited for twenty years. You've spent a large amount of money on a private assessment. The least you could do for yourself is to show appreciation. You might also want to thank yourself for waiting for so long and for going to such expense.

Rejoice / relief: I don't understand this comment. It seems to me some people 'want' this diagnosis as if it's some kind of award and they've joined a select club (it sort of is and I'm now in it though I wouldn't seek this). We don't always 'seek diagnosis' - we are mostly looking for clarification. Diagnosis can deny or disagree as well as confirm.

'The least you could do is show appreciation' - we don't know the background of people who opt for the private route - perhaps they don't trust the NHS' mental health system, perhaps they were in a position where they couldn't wait so long - the length of the wait does rather indicate how low a priority it is.

'Going to such expense' - there's a value judgement right there - my experience of being and working with others facing prejudice is that they're mostly compassionate towards others facing similar.

We must agree to disagree I feel.

Pegasus

I know…it’s daft.  Thank you for taking the time to reply. 

NAS75891 said:

After about 20 years of thinking I might be autistic I was diagnosed earlier this week.

This should surely then be a moment for you to rejoice?  If you have suspected you were autistic for the last twenty years, does it not follow that receiving a positive diagnosis after such a long period comes as momentous relief? You've waited for twenty years. You've spent a large amount of money on a private assessment. The least you could do for yourself is to show appreciation. You might also want to thank yourself for waiting for so long and for going to such expense. Think of another life, a parallel world in which you either couldn't afford a private clinic. Would you be tormented then by not knowing? Think of another life, a parallel world in which you died and never suspected for a second you were autistic and never found out. 

As the great Mark Twain famously said,“ I've lived through some terrible things in my life, some of which actually happened.” If you want sadness and depression live in your remembered past. If you want fear and anxiety, live in your imagined future. If you want to live in peace, live in the present.

Thanks for your reply Basementcat. 
It seems from your response that you are having an assessment at some point in the future??

The questions were a worry for me; there were some I genuinely wasn’t sure what the answer was but the assessor gave concrete examples which really helped