Conflicted!

SJ7 said:

am I cursed forever to be self aware for the remaining of my life?

I experienced something similar following my diagnosis in 2024. The assessment process highlighted many things that I hadn’t noticed before. I was hyper self aware for a few weeks but it did gradually tail off. Looking back, it was exhausting as my mood and hyper vigilance were up and down.  

A year and a bit later and I’m more comfortable in my own skin and I don’t consciously think about my traits unless I choose to mask. I’m comfortable deciding for myself if I should mask or not. 

You are the same person as you always were so it is likely that you will return to how you were before diagnosis, albeit armed with new self knowledge to equip yourself to deal with various situations. 

It is great to hear you experienced an understanding Doctor.  That is good news.

Three weeks ...might feel rather a long time to wait for your IQ test.

Stress and anxiety in Autistic people (whether children or adults) can feel a bit different compared to non-Autistic people.

For autistic people it might include extra concerns around things such as:

• communication differences,
• disruptive changes to routine,
• intolerance to uncertainty and
• sensory differences.

You have described your family doing it's best to get on with life's routines (admittedly, disrupted by the geopolitical pressures, turmoil and surprises).

As your family also may prepare for and adapt to the potentially more stressful than usual holiday time (around 18 - 20 / 22 March) - maybe a small project to unite and occupy both young and old would be worthwhile working on together?

I was thinking of something tangible - such as putting together 2 sensory bags (1 for children, 1 for adults) - ready to enjoy and offer comfort over the holiday time whenever the opportunity presents itself.

Nothing need be purchased; as a few favourite suitable items from around the household could be gathered together and added to the most appropriate age group bag.

Familiar items - which bring comfort when a peaceful moment would be welcome over the hectic holiday time.

Putting the items in a bag is part of ensuring they are easy to find, easy to relocate to a less busy area, and also mean they are transportable if you do find you have the opportunity to spend some time outside / visit a friend or relative.

Maybe you might think of some items which reach across the generations - such as a board game with tactile pieces, the familiarity of a beloved storybook, or poems.

The simple pleasures around family life with their reassuringly familiar touch / fragrance / sound etc.

Think "Old School" (they do not need to rely upon electricity, batteries, and modern conventions).  The sort of things which would be entertaining on a picnic (even an indoor picnic - if that is what needs be).

I have made good use of such arrangements in the past (and still maintain such a bag in my own household).

The art and enjoyment: is to plan a little, gather a few things - then leave it be for a couple of days - before subsequently editing / adding a few more items (repeat as necessary).

Maybe, one generation could select at least 1 item on behalf of the other generation (thereby, providing a surprise item for each to discover in their respective bag?).

My sensory bag started from just 1 item.

...an old, well-worn, wooden ink pen box.

It had belonged to a generation before mine.

Whichever small items I choose to add into that little box, over time; continues to add to it's legacy, relevance and sense of rediscovery.

The item then somehow takes on a new story of its own (becoming more meaningful each time it is a good idea to rediscover it and the other items in my sensory bag).

The pen box, plus some other things; are now housed in a small, sturdy, bag made by incorporating recycled colourful carpet pieces (from old saddle bags).

To my mind; this is my nomad bag.  Around the World there are / have been nomads of long cultural tradition - stretching across the ages, geography and endeavour.

This well-suits my own Autistic outlook and independence of spirit (I feel sure my previous family generations would approve too).

(If you were to wish to compose a sensory bag, your version might be thoroughly modern in look and contents - it would reflect whatever best supports your preference / that of your other generations too).

Just an idea.

wisdom words prof! I haven't thought of it that way.

SJ7 said:

I'm going to yap more about being conflicted

You go ahead and yap as much as you’d like, lol!

SJ7 said:

has any of you face something similar?

I had a similar circumstance with flapping as well. Just before I was diagnosed my wife realized that I flap and hop when really angry (she made fun of it, which made me flap and hop even more), and it wasn’t long after the diagnosis that I realized I do it when I’m excited or really stressed out as well. Now I’m very aware of it. One benefit is now I can see it coming and I can mask if I need to.

For example, I get stressed at work a lot and I can feel a good hand flap coming. When this happens I can make a choice:
1. Mask and hide it until I’m free enough to do it.
2. Excuse myself and flap and hop in private.
3. If I’m around people that I trust, I can flap publicly.

SJ7 said:

am I cursed forever to be self aware for the remaining of my life?

So with the example I just gave I don’t really see it as a curse. Before I was aware I didn’t really have a choice but mask it, but now I see that there are options. I think the important thing to take away is that:

SJ7 said:

honestly it makes me feel better when i'm over stimulated

Now you have an option to make you feel better when you’re overstimulated. Or you can choose not to in order to fit in. Either way, you didn’t have a choice before.

I'm going to yap more about being conflicted, but maybe in a new light after the original post.

I've been officially diagnosed since I wrote the original post with ASD (level 1) and my issue now is that if i wasn't self aware before, i'm now 100% self aware which makes me question if i'm doing what i'm doing now because I know it...

I'm talking about my new hand flapping thing, my diagnosis mentioned "Hand twirling and hand motor-mannerism were observed during assessment" which at the assessment time I wasn't aware of, it was subtle... But now as soon as I try to do something with my hands I notice it but now I try to NOT suppress it, so I changed it from twirling to more movement to shaking/flapping and honestly it makes me feel better when i'm over stimulated...

But this is exactly what makes me feel conflicted, i never did it in all my conscious life probably due to masking and social norms and now it only happens when i'm aware... I'm lost for words, has any of you face something similar? How do you deal with it? am I cursed forever to be self aware for the remaining of my life?

Thankfully the alerts are reducing in frequency since the war started...
I did go today to the new appointment at my government clinic and the doctor was sooooooo understanding and she told me she'll just use the existing ADOS test that i've done at the private clinic. I also did the hearing test which apparently was there to prove that the applicant isn't ignoring being called and actually has autistic traits (I believe this rule was added for children but carried over to adults screening).

Now i'm just waiting for my IQ (psych test) which is in 3 weeks, i couldn't get a closer date...

Glad to see you’re still safe.

I haven’t applied for disability, so I am not sure if I’d have to jump through similar hoops that you are. I’m guessing it’d be similar. I did have to take an IQ test as part of my Autism assessment, though.

What you are going through sounds absolutely exhausting. They are obviously trying to screen out people to keep most from getting the PoD status. Especially the hearing test. What in the world is up with that?!

The IQ test could also be an effort to screen you out, but at the same time I think the IQ test actually helped with my diagnosis. I was diagnosed as borderline Autistic, but my psychologist said that she would have labelled me as Aspergers if they still used the term. So I think being above average helped with that.

Thanks to all who replied with kind words!
I tried to apply for PoD status here at my country (PoD is short for People of Determination as oppose to disability) as ASD is eligible for that but was rejected even though my diagnosis clearly says "Autism Spectrum Disorder Level 1: Requiring Support" and the main reason is because they said the report is coming a private hospital rather than a governmental one! I went to it because this private hospital was listed as one of your accepted sources!!!

They requested that I go do the test again at another facility, i'm already exhausted... Is it just here or is it the same everywhere else?
They even asked for a hearing check which did not make sense at all. When I asked why, they said maybe your child does not reply to his name being called because he can't hear it! I said B# this test is for ME and I hear you fine! lol...

They also requested an IQ test which I don't think is relevant at all since I've been already diagnosed vs the DSM-V criteria so are they going to deny me accommodation status because i'm smart?

What are your experience with this?

That’s bad. Sorry that you have been impacted. I too hope that it ends soon. 

Oh no, I’m so sorry to hear that. Please bear in mind that not all of us over here in America agree with the war on Iran. I, for one, never wanted for our allies over there to suffer like they have. I really hope that you and your family stay safe.

Keep us posted.

I am sorry to hear you and your family are caught up in the conflict and also hope it will end soon.

"All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood."

(Universal Declaration of Human Rights, UN, 1948)

Stay safe and my thoughts are with you.

I'm sorry you are having to deal with it first hand, it all sounds awful. It's a terrible thing for anyone to deal with, especially autistic with little kids. I hope it all ends soon too.

They are and it will likely take a while for you to settle as you work it all through.

So I've officially received my diagnoses last week but I didn't even have the time to reflect on it... Sadly Iran has decided to bombard us constantly on daily bases until today... This is very sad... I hope it ends soon... my kids are terrified

Thanks! I guess...
I still feel like an imposter, i hate this feeling.

Welcome to the tribe!

Hey, congrats, hope you are feeling okay with it, it can stir so many emotions. It was also my child being on the pathway that spurred me on to seek a diagnosis -ended up being diagnosed around the same time as my son (11) end of last year. I wanted to be able to figure it out with him, and be able to help answer any questions and also just so he has someone to relate to. Like leveller61 said, go easy on yourself.

it's a shock... suspecting and self diagnosing is something and actually getting an official diagnoses is something else!

Hi SJ7  I am pleased for you that you now have some answers. How are you feeling about it? Know that it's OK to have a range of emotions about it, and be kind to yourself.

I was diagnosed today with ASD...