Early on in your late diagnosis...

Flashley

Hi folks, I've got a quick query. How many of us who were late diagnosed had got to a point where we had coping strategies so ingrained we didn't recognise them as such?

After Diagnosis, it felt like something shifted, (maybe with the start of medication?), I don't know, but suddenly, I felt hyper-aware and more impacted by my traits than before. My short-term memory, executive function and restlessness suddenly became more pronounced and disruptive.

I'd like to know if this is a common shared experience and if you have any views on why it happened if you went through the same.

Morgan_Scope

I have read a lot about this subject, and it does seem to be quite common, @Flashley.

This is one of the reasons I always recommend that any disabled person filling out a PIP or Work Capability form seeks support from someone who knows them well. It can be difficult to see the bigger picture of your own needs, as we all develop our own coping strategies and may not always recognise them.

Many neurodivergent people I’ve spoken to have shared similar experiences to what you’ve mentioned. Some have even said that their traits seemed more obvious or even more challenging than before. I wonder if this is, as you suggested, because as we learn more about ourselves and why we do certain things, we become more aware of them?

Hopefully, some of our other members will be able to share their own experiences with you as well.

Albus_Scope

When I got my diagnosis, I was told I almost got "more autistic" which although isnt an actual thing, has some truth to it. When you get a diagnosis like that, you find you notice things more and that can sometimes lead to your usual ADHD habits becoming more pronounced and the mask starts slipping a bit. Which personally I see as a good thing, as I'm sure you're very aware of, masking is so draining!
It's a heck of a lot to take in, so try not to overthink things, though I totally get there's 40 years to now review and unpack through a neurodivergent lens. I found I had almost a period of mourning when I got my diagnosis, but after a lot of self reflection, I know myself loads better now and have worked out my triggers and coping mechanisms.

There's several good channels on youtube who talk about late diagnosis ADHD, I'd recommend Orion, that autistic guy, Mom on the spectrum, How to ADHD and Legion of Weirdos. They all have their different styles, but I'm sure something will grab you. 😊

Amaya_Ringo

I've only ever been told I 'don't look autistic', or 'seem pretty normal' when the subject has come up…I am guessing this is because of something like this - I learned to mask, listen and imitate and blend into whatever situation when I was young because I didn't have any support. I was diagnosed as an adult and my diagnosis definitely helped me navigate the world a bit more, but because I didn't have that insight as a child, I still don't like to ask for help, internalise emotional reactions to things and so on which are not altogether healthy coping strategies.

One of the reasons I 'failed' my original PIP assessment is that when I am at my most upset internally I tend to put a smile on and pretend I'm happy. So you can imagine how that went down. Trying to reassociate my emotions to my reactions has been a challenge and really still only something I can do in front of family even now. That survival skill of needing to mask to keep people at arm's length was great in secondary school and is useful in some work situations, but I don't think it's great.

Personally I don't really like 'mourning' language used around autism. It suggests the loss of someone who previously existed, but they didn't. It also implies we're less than who we thought we were, but we've always been these people. Diagnosis is really about understanding that a bit more, like getting a rough operation manual for the first time :)

Flashley

In my case, it's ADHD combined. I've got, and always have had, all of the common tells, but I've also spent a long time (14 years) in a difficult situation that was affecting me massively. For the last 3 years, I've been away from it, but no matter what i do to distance myself it follows me in part, and the degree of unpleasantness has intensified. I've started struggling a lot with symptoms that look like my ADHD, but I'm told it might be trauma-related as well, or instead.

When I got my diagnosis, I went through a big escalation in my symptoms, and then as the medication trial and error process has found me a stable compound and dosage, I've got a pretty good baseline to think clearly from! All the same, I've found that I'm only now getting these overt episodes (sometimes for 2-3 days before i get back on track) of freeze, over-stimming and a few other things around the time I am either approaching an expected encounter with my previous situation or when it comes looking for me.

I just don't know if there's a way to better cope with this, because I'm not able to enforce permanent distance from the very thing that is triggering me, but my work and personal life is beginning to be affected negatively each time I hit the trigger point and take my time to rebalance or recentre.

Razr

https://forum.scope.org.uk/discussion/126191/early-on-in-your-late-diagnosis

been the way i am all my life to be diagnosed when i was 50, 5 yrs ago, i know how you feel mate, you are not alone there that is for sure

Haha we are special, finaly