Late diagnosis, nothing prepared me for this

I am 22F and got my diagnosis 8 months ago. I found it harder than I expected to process everything. The assessment itself made me think loads about my childhood/teenage years, which brought up loads of confusing emotions. I felt some anger towards my parents for ignoring my teachers, who noticed my 'difference'. I have been in denial some of the time too.

I have been able to move on now and I can finally stop obsessing about it.

You might like to consider talking to a counsellor who is familiar with autistic adults. That helped me (although it was other reasons that made me go). Don't worry, your reaction is natural and you probably just need more time and space to sort through your emotions.

Weazelbeast said:

What do you mean by  changing your narrative.

Our narrative is how we account for ourselves in terms of our lived experiences, or in other words our life-story ~ so in terms of changing it we regard ourselves more positively as being neurologically divergent; rather than negatively for not being neurotypical.

Congratulations on your diagnosis. 25 is young and you have a whole life ahead. I was 56 when I worked it out and was diagnosed.

Tony Attwood (his books and you tube videos are worth a look) points out that it is common place for late diagnosed people to initially feel elated as they suddenly realise who they for the first time, but sometimes later get depressed because they realise so many things during the years they didn't know could have been so different.

But, I would encourage you to bare in mind a couple of things: diagnosing girls, especially if bright, especially if they mask is hard. Only in recent years have the subtler presentation been more closely studied. Most mental health professionals are still missing it when it is glaringly obvious once you know. They missed me even though the hallmarks of my autism was stamped all over my every interaction with them.

My boss is an experienced teacher. He's worked with and championed many autistic kids. When I told him, his response was; 'ah, Dawn. We always miss the girls, while the 'boys melt down and throw chairs across the classroom, no one sees the girls quietly shutting down at the back of the room'. As for parents; my mother cried the day I showed her my diagnosis. She said she knew there was something, but the school wouldn't listen to her. She was grieving because I never had help. And yet autism still hadn't crossed her mind even though my Dad's family is rife with it.  I had to reassure her Dr Wing didn't even make the connection between Kanner's and Asperger's autism until 1981, when I was 16. NO ONE could have known then.  STILL, not enough professionals have enough knowledge to see, so what chance do many lay people parents have? My mother did her best to defend me, but COULD NOT have known.

You have every right to grieve for the lost years, when you could have known, could have been understood, could have had your needs met, could have done things differently. Scream, cry, feel it and let it go.

I hope then you see that you have maybe three quarters of your life ahead, and now you DO know, you can create the life you want, maximise your autistic strengths, decide how you want to deal with your autistic vulnerabilities and be part of what will make things better for the girls and other subtler presentations who follow us.

Your feelings are normal, but the future can be brighter now x

What do you mean by  changing your narrative.

PuddingKenma said:

I can't stop asking myself things like "Did my parents honestly think this was normal?" or "Weren't my teachers supposed to be trained to pick up on students that seem heavily isolated and have difficulties?"

I 100% had this thought and still think about it from time to time! Surely someone should have noticed I was struggling or all my school reports had the same points about not contributing etc. 

Although Autism is by no means a "new" thing I think it still "new" to a lot of people who weren't exposed to it before or didn't know what it was. My wife is a perfect example of this, she is the school year below me (both now late 20's) and was one of 3 diagnosed in the entire school year. Whereas now it seems more like there would be 3 diagnosed per class. (guestimates)

We put down me being missed to the fact I am an only child who lived in a very rural/remote area so spent a lot of time on my own with no one to be compared to. Over time as I process it more I don't think about the past and why it wasn't picked up and focus more on the future and how it will change things. After all you can't change the past...

I'm also told females are much less likely to be diagnosed/identified anyway but I don't know enough about it to comment on it really. 

Congrats on the diagnosis though. Glad it brought some happiness! 

PuddingKenma said:

Hello everyone,

Hello there ~ PuddingKenma.

PuddingKenma said:

Im 25F and was diagnosed this month after a lifetime of struggling and confusion.

My diagnosis has left me feeling mostly happy- someone has had the patience to listen, and recognises my struggles without dismissing me. It gives me more confidence because I spent so long being told "there's nothing wrong with her she's just badly behaved" it just became the default for me to think I just had a really bad attitude, but not being able to help it.

When I got diagnosed back in 2015, it was a lifelong puzzle solver that I very much needed and wanted the answer to in respect of me either having a bad attitude ~ or else as it turned out a specific type of aptitude that had not been appropriately facilitated, identified or affirmed until I was 44.

PuddingKenma said:

What I'm really struggling with is the anger and resentment I feel towards family and the adults I was supposed to be protected by growing up. I feel so angry that nobody cared enough to notice or raise a flag that maybe there was something up with me?

Autism awareness has only recently become generalised to an extent where health professionals and educational care providers know what to look for, and most parents are so sleep deprived and shell shocked by the life-changing effects of having children ~ that recognising neurological divergences can require some quite severe trait symptoms, and the more one is able to socially camouflage and personally mask ~ the later one ends up getting diagnosed.

PuddingKenma said:

I can't stop asking myself things like "Did my parents honestly think this was normal?" or "Weren't my teachers supposed to be trained to pick up on students that seem heavily isolated and have difficulties?"

Not until more recently really, as more people have become aware of what autism involves as a spectrum condition with varying extents and ranges of presentation ~ with even some health professionals still to this day believing that people must be severely impaired communicationally to be autistic.

PuddingKenma said:

Has anyone else had to sit with feelings like this after diagnosis? I hope over time it will subside, but the more things click into place for me and start making sense, the less it makes sense that I went this long without help.

In my case, I used the child development norms associated with children that have Asperger Syndrome to review each stage of my upbringing, using The Complete Guide to Asperger Syndrome book by Tony Attwood, and just imagined myself as being my own time-travelling advocate that explained to my parents, teachers and other authority figures that yelling at me and giving me grief about my attitude was born out of ignorance, and for that I forgave them for they as much as I knew not what actually needed facilitating, identifying and affirming in terms of my aptitude.

Changing one's developmental and life-long narrative to an autistic affirmative one is often recommended, give it a try perhaps.

I think that knowledge within the general population of what less overt autism traits look like, is almost completely lacking. What most people recognise as autistic, is a non-verbal child rocking in the corner of a room, not interacting with anyone. While it is aggravating that autism is not recognised - I was 59 when I was diagnosed - it is probably unfair to expect any person who is not a specialist in autism to recognise it.