Post Diagnosis Blues

Aw! It seems that you made a fantastic job of spoiling your partner for her birthday. I imagine that she must have been really happy?

I also have 3 children so I know how difficult it is to get time to yourself! Even once the litluns are asleep I still have my eldest asking me to do things! 

Kids are a fabulous diversion activity. My youngest who's 2 is the best for this, she has global developmental delay so I have to trail her everywhere which saves me from having to attempt polite chit chat with other parents that I don't know. 

I'm glad that you got to wind down in the evening!

I hope the sports day went well?

The sun was shining, way too much!! This morning at Nature tots (play group at the local nature reserve) was good as it's in the woods under shade but this afternoon trying to put together a trampoline in the raging sunlight was not so good! I gave up i the end and have deferred it until tomorrow morning before it gets too hot!

Aw sorry to hear that! Mind you I think that overthinking or thinking in loops  is part of the nature of autism so we’re destined to be overthinking about something, whether it’s about autism itself or something completely unrelated. 

Yeah I think I understand what you mean, that it’s better to learn about bits of autism as and when that ‘bit’ becomes relevant, as opposed to just learning absolutely everything about autism all at once when half of it’s not even useful?? Better to just pick out the bits that apply to us and are helpful.

We like to keep ourselves to ourselves so I took the day off, picked up some balloons I had made the night before, took her out to her favourite place for lunch (kept it a secret) and had flowers delivered for when she got back (as well as all the presents!). It was a nice day - we rarely get time together like that with 3 kids!

Kitsune said:

I tend to preoccupy myself with amusing my children, good diversionary tactic and makes me look like I'm busy

This is what I did in the end! I found a quieter area and played with my boy and his little friend with all the water stuff! Re the ex: we can communicate over text but when we're together we either talk through our boy to each other, and refer to each other as mommy or daddy, or we just don't speak. I'm fine with that by the way!!

I very much got to wind down last night, thank you :) 

I have another sports day to look forward to this morning for my littlest and then I finish work early on Friday's to pick my other boy up from nursery :) 

The sun is shining, have a great day!

I still have days where I can over-think stuff.

I think that learning certain things is as important as "unlearning" others, if that makes sense.

I think that it's good to learn as you go, rather that learn everything first, including stuff that doesn't help or apply to us, then have to "unlearn" to stop yourself over-thinking.

Dunno if that makes sense, but you can know too much when it comes to something that relates to you. Autism is such a mixed bag it's best to pick and choose the right information.

No problem at all! Trust me the fallout after diagnosis is always something I don't like to see people go through! It can be rough!

It's good that you're on the waiting list. I had a 6 month wait but 6-9 months is good, in some areas it's 2-3 years!!

It seems as though you've had a lot on! What did you organise for your partner's 30th? It's good that she appears to have liked it. Breaks from routine can be a pain! School events can be tiring, do you know any of the other parents? If I'm at a school event and there are no other parents that I would talk with there then I tend to preoccupy myself with amusing my children, good diversionary tactic and makes me look like I'm busy :-) Dealing with your ex-wife doesn't seem like too much fun! Is she civilised when you have to attend school events together? Maybe you could get your child to show you their work or do an activity with them while ex-wife talks with the teacher? I hope you manage to wind down while having alone time on your PC this evening?

It's so good that you've come out of the other side of being 'lost in it all' and you're still here to tell us the tale :-) 

Thank you for taking the time to share your experience and advice with us :-)

That's one thing that's so good about this forum. There's people at so many different stages pre and post diagnosis that there are plenty of people, like yourself, at a later stage of acceptance and coming to terms with 'being autistic' that can help those of us who are still going through the earlier stages.

Thanks again for sharing :-)

It's understandable that getting the diagnosis would trigger the 'symptoms' that you list above. It certainly triggered the first 4 in myself. I can see what you mean now, thank you for clarifying :-)

I had little experience of autism before I was diagnosed. Within 3 months I was told I was autistic, and had a world of stuff to look at.

I've spoken to other people who got lost in it all, I know I did. ALL I saw those first few months was autism in everything, if you get what I mean. My past, things I did, a list too long to even type!

I think it's good to just step back and not get too intense with it all. I couldn't see the wood for the trees. There are things that will apply to you, things that won't, and things that aren't even worth thinking about.

You've just got through a pretty stressful time with the diagnosis process. Take some time out, and let it sink in naturally. Always put your own identity before the autism, yes it is a part of you, but it's not the only thing about you.

It can feel like an identity crisis, or that your life is set in stone. Just take your time, and day by day it makes sense. You can really go too deep.

You might feel a bit self-conscious, reflective, and critical of everything but trust me, it's best not to concentrate on it too much at the moment.

You've done the hard part, just try to pace yourself with it all.

I'd like to think I know what you are going through, and trust me you'll get through it!

I was unclear - what I meant was that getting the diagnosis triggered a bunch of things:

• anxiety
• frustration/anger
• narrow and intense focus on a specific interest
• stimming (due to the above)
• burnout (due to the above)

And whadda-ya know... they are all things that lead to a diagnosis of autism...

It's the 'closed-system feedback loop' effect I was referring to - where the diagnosis amplifies the things that triggered the diagnosis...

I wasn't inferring that the traits weren't already there

I'm on the waiting list for my assessment. The waiting list is 6-9 months which isn't too bad, it was just getting to that point that dragged on...

I've had sports days to go to, primary school induction meetings and taster sessions, my partners 30th birthday to organise for yesterday (i did good apparently!). So it's nice stuff for the majority, I just have to break routine a lot, have annual leave from work and be more social than usual. The school stuff wears me out though, I don't fit in with other parents at all and it makes me feel weirdly uncomfortable around my own child as daft as that sounds. Throw in the fact my ex wife is there being all loud and in your face... I tend to retire to the corners and keep myself to myself looking around at the various activities they have lined up for the children. My head draws a blank because I know I should be asking the teachers questions...which leaves me with a feeling of guilt. 

I've already booked in some alone time on my PC when I get home tonight! She knows how much it's taken it out of me and she's thanked me (although I'm not entirely sure what for or that I need thanking, I'd do anything for her).

Thank you blank_smile I am feeling better now. I seem to manage to have these ‘acute anxiety’ episodes since diagnosis that can feel quite extreme but only last 2/3 days. Now feeling a bit silly about being quite so public about it but I’m also really grateful to a few friends on here who have been amazingly supportive

I think you sum up the adult diagnosis journey very well. It’s certainly fraught with very many difficulties and hurdles! Have you been referred for an assessment?

What has happened this week to make it unusual? Sorry to hear that you’re running on fumes!

I hope you're feeling more like yourself now Kitsun. I'm learning so much from reading about people's experiences on this forum from validation about my own feelings of my journey so far to posts similar to yours: what the future could potentially hold. Thank you for sharing 

Adult diagnosis seems to go like this:

• Live a life feeling like "something's not quite right here..."
• Hit rock bottom, discover autism
• Eureka! That's me! This explains EVERYTHING
• I'll pursue a diagnosis (it takes how long?! It's cost how much to go private?!)
• Cycle with depression, am I really autistic? Am I finding excuses?
• Yes I am
• No I'm not (repeat!!)

This is my journey so far (today I'm feeling like a fraudster again... I've had a very unusual week though so I'm running on fumes at this point)

My own experience is that my autistic traits had been there all along, they were traits that I had recognised as being a part of who I am for  a lot of years, some of them are traits that I’ve been able to work to my advantage. Getting an Autism diagnosis didn’t trigger my autistic traits, it simply explained why I have them. My diagnosis joined together the dots, it bought together a lot of miscellaneous traits and grouped them under the single umbrella of autism. Those traits are still of course just part of who I am, it’s just that I have a better understanding of them now :-)

Aw! It’s not pleasant reading the report is it! 

It is you in the context of Autism it isn’t the whole you. It is simply one of the parts of the whole, it certainly isn’t the sum of the parts.

Let me look at that link.....

I just read through the link, it’s really beautiful, I can see the point that it’s making too.

I think that regardless of your diagnosis, as long as you are leading a fulfilling and rewarding life, if your life works for you, then that’s all that matters :-) 

Well, I read it -  yuck...

Who is this rude, socially inept, naive, anxious, frustrated/angry, limited, damaged man...?

Oh wait... ***, it's me!?

But it isn't 'me' any more than - heavy steering, no stereo, poor fuel consumption, no airbags, noisy, expensive to maintain is a Ferrari 250GT... it leaves out all the 'desirable' aspects...

Also, a side note on 'being happy':

https://theoatmeal.com/comics/unhappy

The Oatmeal is a genius and kind of my guru...

The irony is that being autistic will mean being given a diagnosis of being autistic is likely to trigger a bunch of autistic traits...

Good advice

Original Prankster said:

So fed-up with autism right now, I just 'want my life back'...

At this early stage it's a strange time. You can lose yourself in the diagnosis at first. I did.

I'd say take a step back, and spend time thinking about who you are, and have always been. You can get too deep into autism, and not think about who you really are. Forget the paperwork, and clear your mind for a bit. Not saying ignore it all, but in my own personal experience I had to just clear my mind for a while.

Yes, you have autism, but there's so much more to a person than that. It's better to know you, than everything about autism. Hope you find your way and get things back on track.

All the best.

That's a good thing to hear. Hang on in there and the changes will be a routine soon enough. Good that you have someone on your side.

Ok. If you're feeling this bad then you're doing the right thing by leaving the report for the moment as it won't help. It would probably be best to wait until you're feeling a lot better and reading it with someone rather than on your own is definitely a good idea. Did yourself and your psychologist come up with any positive ways in which to support you?

I see your point the report needs something positive to soften the blow at the end, rather than just 'here you are in all your autistic glory' as assessed by Dr whoever!

I'm sorry, it seems heartbreaking for you. It can seem overwhelming at times, realising that we will always be this way. But, it may not feel like it now but there are positive attributes to being autistic. We're very determined and we don't give up easily, use that strength to focus on feeling happy again, because you will feel happy again, everything is always ok in the end :-)