Hello again.

Hi Gilly.  I don't think you need to worry too much about bothering your husband with your woes.  You are obviously a caring and considerate soul based on what you have written above.  He may actually like the distraction of thinking about your problems to enable him some respite from ruminating about his own.......and to actually help and support you with something?  That is how I would feel, I think.  I'm a 50+ male btw.

In terms of your worries, I commend you for seeking clarity about your own life and urge you to continue despite your concerns and wider current stresses.

I write to you here because I think I am a good case study of how NOT to proceed.

Like you, I knew something was decidedly different about me and it was starting to bother me and I was noticing how my thoughts, beliefs and behaviours were not the same as 95% of the people I met.  It was bothering me so I was contemplating getting some help.  I dabbled around the edges for about six years searching for answers about myself (whilst self-medicating with booze in a controlled but excessive fashion.)

My concerns about what I may find, the complexity of the task and external pressures (it with my mum's ill-health for me) led me to approach the self-seeking in a decidedly half-arsed fashion.  There was always an excuse - "manana" became a mantra - "how can someone see inside my head" was a fairly standard thought and "we are all unique little snowflakes anyway....so just "man up" was the most common advice I received.  So I did nothing.  BIG mistake.....HUGE!

I had a monumental burn-out about 6 years ago.  My indisputably inexplicable behaviours and "differences" along with a very busy life brought me to a point of isolation, fear and profound loneliness.  It was horrid.  PLEASE don't find yourself in that place!

In the immediate aftermath of my burnout, it was hell on earth - and hell in my head.  The self-medication intensified as did the self-searching.  It took me a further six years to reach a place a serenity and peace - but at tremendous cost.  I still have stress, but nothing like the horrendous fear of not knowing who or what I am.  I have no current need of self-medication.  I also feel no current need for a formal diagnosis.....but;

I dearly wish I had sought an early diagnosis despite accepting now (with the benefit of hindsight) that it would almost certainly have been an incorrect one.  Even knowing this, I still wish I had sought diagnosis because I am pretty certain it would have nudged me away from the burnout hell that I was forced to endure.  I find it hard to believe that a misdiagnosis and receiving inappropriate treatments as a result could have been anywhere near as damaging to me and those around me as the burnout.

Keep going Gilly.  Be brave.  Don't allow you to be distracted from your goal.  Prepare for your assessment (there are oodles of advice on these pages in that regard) and then see what happens.  Taking the first step down the right path (ie diagnosis) will stop you standing still in a place of uncertainty - which in my case - led to hell.

I wish you all the best.

These links are really helpful - thank you :) 

Oh gosh - I’m sorry that must be awful for you both. I hope it goes well

Thank you so much for your encouraging reply.
My husband has a big oncology appointment today which has been causing huge stresses but could go either way, regarding the results.
Once we know what we’re dealing with I feel I can prioritise my worries. 
I’ll take a look at the links you’ve sent. 

I'm 45, also waiting for assessment and I understand completely!  

One of the things it helps me to remember is that they won't just be looking at what you say, but about HOW you say it. I struggle a lot getting my feelings out, and I worry that I won't be able to say what I want to say once I'm there. I've just found out it might be an online assignment which helps as it's easier to drop masking. 

I've just watched this video which helped me to know what to expect, which also helped:

https://youtu.be/mPPIv2nILS4

The other things that help are research about autism and making notes and lists about all the reasons it applies to me. This check list was also very helpful for me as I saw myself in quite a lot of it. (Not everything- we're all different!)

https://the-art-of-autism.com/females-and-aspergers-a-checklist/

I hope this helps. You arent alone!

I forgot to mention - my eldest is in his late 20s and I’m in my mid 50s. My youngest was diagnosed when he was 10. 

Hello 

Hi Gilly,

my eldest got the results of his assessment just last week (he was given the diagnosis of autism) - he had his assessment in early October. I’ve have an appointment for the second part of my assessment this month. 
My son found the assessment ok. His was 5 hours long (including a break in the middle). He didn’t find it too bad - I think you just have to be honest, I certainly wouldn’t worry about them not ‘believing you’ - they’re not trying to catch you out. Perhaps you’re like me and have issues with trust and feeling safe - so are feeling a bit paranoid about how the assessors will view you? Try to focus on the fact that they’re just trying to help you - and to give you the correct diagnosis. They’re on your side fundamentally. So try not to worry too much about how they will perceive your answers - just answer their questions as straightforwardly as you can. I’m sure you’ll be fine. My eldest found it ok - and he’s not comfortable with lots of things - and finds talking to people he doesn’t know really stressful. But he found it to be ok. 
I’m sorry that your husband is unwell - that must be so stressful and worrying for you both - and it must everything else in your lives feel so much harder. I’m sure though that your husband would welcome the opportunity to support you just as you’ve been supporting him with his illness. Try to talk to him about your worries if you can. Your in a loving partnership and I’m sure he’d want to support you as much as he can. Sometimes when we have problems of our own it makes us feel good to be able to help someone else - he might find it a relief to focus on your needs instead of his own health problems for a while. So do try to talk to him. Good luck to you both x

Oh bless you Roy. 

Hi, just wanted to say hello. I’m so sorry your husband is unwell. I fully understand your anxiety with your assessment, I don’t even have a date yet but Istill get very anxious about it. For many, self diagnosis is fine and valid. I find that I must get formal validation, the imposter syndrome just keeps attacking me. I know I’m autistic and can see it in others of my family. I’m 55 and can understand your need to finally know once and for all that yes, you are autistic and not faulty or broken. I’m starting to process a lot of things that have happened in my life and starting to think,  no that wasn’t my fault.

Hello 

Oh this is like I’ve found my little corner of the internet/ world that understands me. Thank you. 

Gilly,

I know that feeling so well.  I was crying this morning because I was thinking the same thing.  I share this story about me to show you I get it and not to make it about me as is often thought.  I've realised that my style of communication (sharing my story to show empathy) is the way Autistics do it.  I find it liberating to be uncovering more about communication, an obsession of mine!

It's no wonder you are feeling lost.  I'm sure there were many aspects of teaching that gave comfort to you as much as you had to mask for the "what was expected" part. 

My Daddy was an English teacher and had to take early retirement because of a severe breakdown which I now understand as a shutdown.

The positives now are that you can do teaching your way but in a different capacity if you feel ready.  If it burnt you out too much, perhaps this is a time to embrace what you don't have to do anymore? I find nature calms me.  I have a tree I sit under and watch the river go by.  The sounds and fresh outdoor smell feels like an embrace to me.

Sending warm vibes of acceptance for a fellow Autistic in their struggles.  I get it.  You are not alone in that sense.

You are kind. Thank you….. reading this helps me this evening. 
One reason I guess I now want to know is because since my thirties I’ve been plagued by the label of a woman with “mental illness”. 
It would help me tremendously to hear that my sometimes difficult way of thinking is because of autism. 
Like you, I’ve spent a lifetime of masking which eventually forced my hand into leaving my teaching career. 
Sadly, I’ve felt a “nobody” since retiring. 

Gilly,

I am so sorry that you and your husband are going through cancer together.  That must be so awfully scary and stressful.  I'm sending love and hugs. 

I've decided not to go for a diagnosis as I feel I am understanding more about myself and gaining more support and friendships on here than any diagnosis could give me.  The diagnosis could provide access to financial help and support services depending on where you are though.  That's the only reason why I put my 11 year old daughter through for an assessment so she could access support if needed.

I feel this is a safe space to air everything because everyone understands how it feels to be Autistic and misunderstood by society.  I am 46 and only just really realising after a long period of denial that I am Autistic which's why I understand my daughter so well.  It's so tough after a lifetime (you'll know this more than me) to come to the realisation that everything you thought you were was not the case.  I've realised that I've been holding up a "perfection/happy/helpful/supportive" mask to try and not be rejected by others.  It works very well but the difficulty is, it makes me feel inside that I am not accepted for who I am because I hide what I perceive to be the "broken" and "unacceptable" parts.  I get ill masking so much.

If I totally unmasked, I'd be singing a lot, dancing to music in supermarkets, hugging people who looked sad and farting loudly if I wanted because I think it's funny.

I am unmasking more with my daughter and my family which feels so liberating but obviously I still have to perform for the outside world otherwise I'd be carted away as those behaviours are not accepted in society as we all know.   I always have to check if hugs are acceptable to friends, when I work out that they think farting is funny, it's their funeral.  When I am happy, I sing and dance in the supermarket subtly which feels great.

My point of being overtly open is to show you how comfortable I am on here being myself.

Virtual hugs if they help.  If that's not your bag, I'm sending loving kindness vibes.

I used to buy over the counter meds for that when I was working.

However, nowadays I just accept that I wake up every couple of hours, sometimes for long periods of time.

It's not unknown for me to be eating breakfast at 3am.

I have that luxury though due to no longer having to cope at work.

I have never considered it to be tied into being on the spectrum though.

I will read your thread Debbie. Thank you for posting. 

I am on antidepressants but have chronic insomnia which has been treated in the past but I think there is a move away from meds for this. 

Thank you…..no, absolutely no offence caused by your comment. 
Yes, you are right, he does feel protective towards me and possibly I shouldn’t try and hide my emotions from him. 

Hi Gilly.

I received a late diagnosis too.

Here is a thread I made earlier (I am the 'deleted user' as I left and returned):

https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/28195/female-diagnosed-at-60

You refer to 'appropriate medication'.  I am not sure what you mean by that.

I am on antidepressants, and have been for years following deaths in the family, and general anxiety, but I don't know of other 'appropriate' medications.

I would say to you that a late diagnosis is much better than no diagnosis, but it's your choice.

All the very best to you.

Hello there. I just wanted to pick up on your final paragraph. Firstly, I am sorry your husband has cancer. You say that you don't want to bother and discuss things with him, as you feel you're the one that should be emotionally supporting him. I just wanted to offer a different perspective. If your husband was accustomed to providing you with emotional support prior to his diagnosis, it's possible that he might welcome the opportunity to do it now, as it may help to provide him with a sense of normality and be a welcome distraction from his cancer.

Please accept my apologies if what I have stated above has caused offence. Also, please continue to reach out for support and advice on this site as and when you need to.