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

MsR

Flashley I will share with you my thoughts on your first post. Perhaps for you until you were offically diagnosed you didn't actually believe you had really had autism and that confirming it you started to believe what you actually had it and started to act like what you have read about perhaps and expected to happen from that.

I was hospital for several years and I was treated as autistic, but it wasn't confirmed until I had the offically testing when I left hospital. There a difference going between possible diagnosis to confirmed and it had an impact on me.

However, the full impact is bit to decipher because when I was diagnosed I was going through a big change as well. So it can be hard to work what is what fully.

Also, be careful too much information can be no good thing and you can start believing what is not relevant to you. You know you right and what you are like, so stick with that, you know your strenghts and not so strong points.

WhatThe

Perhaps for you until you were offically diagnosed you didn't actually believe you had really had autism and that confirming it you started to believe what you actually had it and started to act like what you have read about perhaps and expected to happen from that.

No, MsR. Late-diagnosed people have no concept of autism pre-diagnosis and our behaviour does not change upon diagnosis.

Flashley, I was already on medication but definitely became aware of my habits and coping strategies, many of which were unhealthy or ineffective as my daughter informed me. My preferences are stronger and annoyingly, my sensory disorders feel more pronounced despite the aids I now use 😕 I wouldn't go back to being undiagnosed for all the tea in China!

MsR

https://forum.scope.org.uk/discussion/comment/963147#Comment_963147

I cannot highlight what you replied to me.

Well, it seems you may have not heard about autistics being diagnosed and then some behaving like it more after diagnosis. This was pointed out to me by an OT who I saw at home, that some autistics do this after diagnosis. There are probably several reasons for that. I wouldn't of thought it mattered whether you was late diagnosis or not.

Me, I didn't know very much before diagnosis. I didn't want to be tested fully knowing about the subject so avoided reading up on it much before testing.Some things I read post diagnosis had a bit of an impact on me. I have worked through that though today.

WhatThe

No I haven't heard of this. What do some autistic people do differently post-diagnosis? I didn't read anything that changed what I do or say.

some behaving like it more after diagnosis

Which autistic behaviour are you talking about?

Late-diagnosis matters a lot!!!

MsR

It is not uncommon and it can apply to late diagnosis as well. After all, I am as well and the OT told me about it.

I had mainly read of positive things before I was diagnosed. After I read more about the behavioural aspects which for me in my childhood I chalked up to really my sensory which is quite severe. I also started to hear of cases hitting the media for crime and an autsitic suspect discussed why they was for pages on forums and it can make some people question themselves even if they are not like. I also saw for the first time about neurotypical from my own faith saying stuff about autistics and possession and it freaked me out and started me very uncomfortable at home. I also read about autistics happy enough to stay at home talking to themselves for hours. This was quite triggering for me and it made it a bit worse than it was for me.

Obviously, in some cases a life of masking may lead to a change in behaviour for some. I don't think I really had a life of masking though. May be some read things and apply everything when all doesn't apply. There are many more probably explaintations.

Dana Anderson mentioned about this in her one of her vidoes. She is not early diagnosed, she was not diagnosed in childhood. She is still very young though.

https://www.youtube.com/watch?v=gp4X5kWvGas

WhatThe

I'm sorry but you're not making much sense here. The OT told you about these supposed changed behaviours upon diagnosis and your faith mentors told you about "autistics and possession"? I've not heard about any such things which is why I am asking you questions.

What were the positive things you read about autism before your diagnosis and can you share them here?

A lifetime of masking doesn't stop when we are diagnosed as autistic. We still mask in public.

MsR

WhatThe, it was clear to me that I was writing about myself, my experience with faith ministers was only about my own unique personal experiences that led me to behave in a matter different to what I was post diagnosis then pre. That is just one example.

I was not thinking of faith itself when I replied to the OP about their situation.

With some people unmasking more when diagnosed, it may lead to a change of behaviour for some and that is to be expected. I do know masking just does not end in life, but there is a change for some people that can come.

I am not sure how my positive experiences or thoughts has anything to do with the thread.

WhatThe

You said - I had mainly read of positive things before I was diagnosed. That's why I asked what positive things about autism you had read.

How do autistic people 'unmask'? I am not aware that we do or can.

MsR

Ok, whatThe to me you have taken the line out of context. I wrote to say that yes for some poeple there behaviour may change a bit post diagnosis. For me I wrote about what led to some of this. I had just heard the positives previously and post diagnosis when I started reading about some things negatively interanlised some of this and just shows how it can be done, your post didn't seem to think it was possible.

I don't doubt that there are other ways that people can experience this as well. I think it is important also for people to stay true to themselves.

MsR

WhatThe, I have seen your edited post and that you asked about unmasking.

I think you may know about this, how some people may hide their autism symptoms around some people and when diagnosed may stop doing so in the overt ways they may have been doing before.

I wrote masking has not really been an issue of mine. However, it is for some people with autism and when they are diagnosed, probably some feel that they can come out and be more themselves and don't have to mask so much anymore.

MsR

I think this discussion and detour needs to end really after this.

When WhatThe posted that late diagnosis are somehow always different not leading people change behaviour.

I then at that point, posted to them that it was possible for some people with a late diagnosis to be affected by negative information that they may read and hear about autism as well. I gave my example which I can only do when writing about myself.

I came though to add this, I certain have no interest in reading the full article myself. I see it as more of a negative one. I have always heard of autistics generally being honest and too truthful and have vulnearability around this. Those will tend in general to be my months.

I stumbled into an article in a journal and it seems negative for me. Someone else who was autistic of any stage of diagnosis might read that and believe it and start to question and adopt negative traits like for themelves. In autism you can confuse people like that as well. The journal was titled basicaly autitistic adults may be deceptive and lacking credibility. To stand true to yourself you would need to say to yourself that has never been my situation and try and brush it off. There is a wealth of information online. Try and not allow yourself to be overwhelmed with it. The given example was to show how it can be done, that is just one of many examples that could be given.

Amaya_Ringo

I actually find the discussion between you both interesting. I also don't know how to unmask, and I definitely wasn't more autistic after diagnosis. I was relieved. I actually consider my diagnosis to have been a massive positive turning point in my life.

It's not to say anything became easier, but understanding why and being able to explain it was definitely helpful. I've overprogrammed to mask, like I said above, and haven't broken that yet - it's interesting that some people experience the opposite. I do have days when my executive function is worse than others, and I function much worse in the winter when it's dark - but that has nothing to do with my diagnosis and everything to do with my brain's fluctuating functionality.

I was working when I was diagnosed, it took more than a year for me to disclose to my colleagues who were all lovely people. It took even longer for me to be brave enough to explore DLA and how that might help me, as I was so terrified of all of these processes. By contrast, now everyone I work with knows I'm autistic, I'm not the only ND person on my team and I have no problem discussing it. But I still wouldn't say I've fully unmasked, although it will be 20 years this year since my diagnosis.

I have never had, or wanted medication - maybe that's a factor for some? I am sceptical how helpful medication is for autism in general - though it can be for co-occurring conditions. I'm really sensitive to all medication, so I would not be surprised if a new prescription would have an impact on how someone's brain reacted.

MsR

For me things are getting better. For example I was on the UK main autistic forum and saw a thread. I steered clear for several days. I decided to post as I had thoughts about it-title like should autistics be free to have bad behaviour or something along that line. Look at the title, there is suggestion in there. It recalls from my childhood as when I perceievd as challenged because of sensory most likely often. If I was feeling very vulnerable it is easy to suggest to me like and also I have quite severe issues repetition ridding myself of harmful negative things. So, I could go into into this repetition when it is not my issue or concern. I replied took a gamble and said what I wanted to and said I am not reading the responses I know I can be impacted. Things have got past my barrier before. As I wrote I am getting better with this. I am picking threads and what I read very cautiously but I cannot block everything out obviously as some things are random.

Also, it has been written that autistics some have an issue with thinking/saying they done something when they haven't. What I expect of myself is higher than I would expect from another so I give a nightmare myself at times over the smallest of things that make no sense for example a saying I done xyz when I didn't like and was staring at someone and pick things with myself. I try and stay away from being suggested to online and finding myself at fault at what I didn't do and trying to give myself some grace.

I don't how some edit on here as I do not see any edit button. Perhaps I need more posts.

WhatThe

Late-diagnosis allows us to be autistic. We don't become anything we weren't already, just a better version.

MsR

I agree that it does allow us to be autistic, but for some people there seems to be a period of adjustment as well.

I think the repetition and power of suggestion to autistics is interesting. One of the criteria of autism is Stereotyped Behaviours and Restricted Interests and in this category I have moderate needs. This involves repetition and I think may be some of us dependent on where we are could have a difficult time in our heads stop ruminating on some things when we want to let them go. So better not to suggest to us to get stuck ruminating things we may not want and may wish you never came across and have a hard kicking out the door and may appear as OCD but it is repetition. I am on medication for this repetition to try and manage it. It is interesting.