New to this, looking for advice

[KateJones]

Hello everyone,

Hi I’m Kate and I’m new here and hoping to get some pointers and advice as I learn more. I hope I won’t offend anyone with insensitive language or asking ‘silly’ questions

Early 50s, my husband (same age) has very recently been diagnosed. I believe I’m NT.

His diagnosis explains a lot of difficult experiences he’s had through life, which he seems to find helpful. This is great because he’s been hung up on some of those incidents replaying them in his mind and repeatedly telling the sad stories of how he was bullied and victimised. It seems to have given him a bit of permission to forgive himself and I’m hoping develop a kinder relationship with himself.

He has also said now he has a diagnosis he will be able to make some changes to avoid some of the more difficult and confrontational experiences he’s been having, especially recently. I’d like to ask those of you who have been late diagnosed whether this resonates with your experiences? Do you think you have made significant changes with new successful coping strategies or has it been more about acceptance and embracing more your ND talents?

Thank you all!

 

[tree]

 

[Mr. Stevens]

Hi Kate,

I was diagnosed in my late 30s. For me it's allowed for more acceptance of who I am, instead of trying to be someone I'm not. That's probably the most important thing. I have also found some new ways to cope, and also obtained work accommodations.

 

[Duncan74]

Welcome Katie, and at least from my point any questions that are genuinely meant aren't, silly or at risk of causing offence. It's the one's you don't ask that are silly or risk offence ;-)

I'm 48 and have a provisional diagnosis for a month, and I'd suggest my reactions have varied across that time. Equally I know my wife is still doing her learning/processing too. So expect that there's not going to be a single 'change'. For example I had an amazing weight lifted the day I learnt this explained so much. But then a week later I was more worried about what it meant for my job, my future. And then in the last few weeks it's been hard as I've revisited a lot of things in the past I'd specifically and consciously learnt to try to stop reflecting on and thinking about. Past CBT on those memories only works up to you revisit those in a new light, and with new perspectives on the alternate pathways/decisions of those days you've over analysed for 40 years.

When my mother in law passed away a year ago I called a counsellor I get access to via work to ask how I should best support my wife. We weren't able to travel due to covid rules, and so she couldn't be with her dad or siblings, etc. The counsellor's response was great. "Don't ask me, ask your wife what she needs". And that was so true. So in this case, you may want to talk to him about what things he's wanting to change. Understand if there's things that he thinks will help him, and for you to be clear if that's something that's going to work for you.

I'm very aware that nothing really changes from the day before diagnosis to the day after. We're all the same people, just with more understanding. But this new perspective isn't just for us, and it doesn't give me any more 'permission' for not making 100% effort with the things I find challenging. Sure, I know why I don't like going to too many parties, especially with new people. But equally I've done it for the last 30 years as I know my wife does enjoy that, so just because of this it doesn't mean I just sit at home and refuse to go.

That you've registered and engaged on here shows how valuable an ally you will be for your husband. Again, welcome.

 

[Nitro]

 

[Rodafina]

Hello and welcome.

If you, or even better your husband, spend some time here and read around the threads, I believe you will hear his story echoed resoundingly here.

Do you think you have made significant changes with new successful coping strategies or has it been more about acceptance and embracing more your ND talents?

I think that’s what this site is all about! Some of us are learning, some of us are sharing, and most of us are doing both. It’s therapeutic, carthartic, and informative to read and write here. If your husband has it in him to join, he may benefit from it.

 

[Crossbreed]

Hello & welcome.

I’d like to ask those of you who have been late diagnosed whether this resonates with your experiences? Do you think you have made significant changes with new successful coping strategies or has it been more about acceptance and embracing more your ND talents?

It is better if you have an autism-competent counselor walk both of you through its elementary considerations.

If you are in the USA, see...

Finding Support Resources in the USA...

Many of us on the spectrum have poor work histories and lack the funds needed to pursue a diagnosis and pay for recurring services. If your...

autlanders.blogspot.com

 

[VictorR]

Welcome! Better understanding how to identify and eschew things that may upset me is helpful, as is finding ways of adapting to the environment, whether that be certain types of clothes, noise-cancelling headphones, and while not for me, but something that impacts me, forms of lighting.

 

[KateJones]

Thank you all for the warm welcome. I appreciate you taking the time to respond

 

[Judge]

Do you think you have made significant changes with new successful coping strategies or has it been more about acceptance and embracing more your ND talents?

Significant changes? Maybe...maybe not.

First and foremost one must try to the best of their ability to identify their traits and behaviors that are not neurologically "hard-wired". That which there's little to nothing to be done about them. The remainder leaves that which might be possible to alter to some degree...but it's important to understand that there is no "magic bullet" in making who and what we are simply go away.

In a world in which 98.2% of a neurological majority tend to take for granted that everyone thinks and reacts in an alike manner. Where we are either expected- or demanded to follow accordingly. Even if we can't neurologically speaking.

To me the most significant change is simply self-awareness. An ability to comprehend who and what we are, and to be a bit kinder to ourselves than before.

ND "talents"? Part of this involves understanding that while some of our traits and behaviors may serve us well under certain circumstances, they may also be to our detriment in other ways. Most of us have no "super powers". That's just a Hollywood misnomer. We're just left with the best we can do under the circumstances.

Example: My comorbid OCD involves things that some employers love....(not that I ever explained it to them). However it's also a condition that follows me wherever I go, and to whomever I meet. In essence I cannot "turn it off", and at time it can be quite emotionally draining, similar to social anxiety. Where even positive experiences can be exhausting. Conversely going into a job interview is unbelievably stressful for me...which often doesn't go well.

I'm just grateful to have figured out who and what I am around the age of 55 and later retired. As an autistic man I have a great deal of unresolved issues, but at least I understand much more about myself than for most of my life.

 

[Hypnalis]

@KateJones

One thing each for you and your husband to think about. They're things that IMO are important, but don't seem to be immediately obvious to people in your current situation (i.e. thinking about things after a new diagnosis).

For you: The "communication gap" between Aspies and NT's is much bigger than NT's think, and includes aspects that NT's are blind to. The reverse is also true of course, but we've had more practice estimating the size of the gap

For your husband: It's definitely possible for you to significantly improve your social and communication skills, and there's probably some "low-hanging fruit". Set some reasonable, achievable goals and start working on them ASAP.
Note that completely "catching up" may not be possible, and if it is, it's a huge amount of work - NT's spend years learning these skills "organically" as children and teenagers.

 

[Shevek]

I discovered AS at 56, near the beginning of two years of accelerated change. I don't think the awareness of it changed my behaviour. Independent trends caused great upheaval in my life and left me with reduced opportunities. Knowing about AS mostly helps me understand my history and be more realistic about managing my life rebuilding.

 

[KateJones]

Thanks again guys. So here’s a thing. I experienced his behaviour as very self focused - without the autism diagnosis I would’ve said egotistical and narcissistic. I am not saying that to be unkind, he is very challenging, abrupt, has a strong need to be right and can he highly critical and blame focussed. He is very dogmatic and seems unaware of the crushing impact of this on others and not acknowledging responsibility or accountability. I appreciate that statement can seem unkind and lacking understanding but it reflects my lived experience where i have been walking on eggshells and unhelpfully enabling a very unhealthy dynamic which I have been fearful to raise. I’d like to ask for your informed thoughts around this so I can manage my expectations. I know I have passed by ability to cope and am hurting him, our children and myself in this as is situation. Realistically how much positive impact on such a dysfunctional situation is the acceptance of the diagnosis likely to generate through new ‘coping strategies’?
All thoughts gratefully received…

 

[Rodafina]

I am not saying that to be unkind, he is very challenging, abrupt, has a strong need to be right and can he highly critical and blame focussed. He is very dogmatic and seems unaware of the crushing impact of this on others and not acknowledging responsibility or accountability. I appreciate that statement can seem unkind and lacking understanding but it reflects my lived experience where i have been walking on eggshells and unhelpfully enabling a very unhealthy dynamic which I have been fearful to raise.

@KateJones,
I would say beware not to equate disrespectful behavior with autism. Read around the posts and you will see that many people who identify as male here have similar struggles, but do not resort to shirking responsibility or accountability. If the dynamic is unhealthy because your husband acts egotistical and narcissistic, do not excuse these things because of autism. I am not saying that you are doing that. We do get a fair few women who come to the forum describing their partner's awful behavior and try to understand it through a lens of autism, but this is not fair to the many many autistic men who remain high quality, respectful, and fulfilling partners despite their intense challenges and struggles with communicating and relating. Autism does not innately cause cruelty, unkindness, or a lack of empathy. We may have difficulty expressing certain things and meeting others' needs, but one can be autistic and also a detrimental person.

 

[Duncan74]

Thanks again guys. So here’s a thing. I experienced his behaviour as very self focused - without the autism diagnosis I would’ve said egotistical and narcissistic. I am not saying that to be unkind, he is very challenging, abrupt, has a strong need to be right and can he highly critical and blame focussed. He is very dogmatic and seems unaware of the crushing impact of this on others and not acknowledging responsibility or accountability. ....

Some bold added and some snipping to help focus.

1) The second set of bolds is to be honest what I struggle with. But I discussed the 'need to be right' yesterday, and in my case it's not about being right it's about making sure that the wrong information isn't actioned /passed on. For example, someone says that the best way to get to place X is use road Y. But due to me spending hours pointlessly looking at maps, measuring routes, looking at traffic data, I 'know' it's actually by road Z. And so whilst it will appear to everyone else that I am being argumentative and need to be 'right' with my route assertion, it's more that I am totally passionate about the person making teh best choice which 'is' route Z. I don't care if I'm right it's more that I don't want someone else to do wrong. Of course this doesn't change anything, but in terms of 'processing' then one of the techniques I've been working on for the last year (ahead of a diagnosis) was actually letting people make decisions, make choices, even learn from mistakes. On the other side there's perhaps something that others can learn about understanding where someone that is appearing to need to be right could be coming from - it's from a really good thoughtful, helpful place, even if to most NTs it's not seeming that.
2) the italics. Sorry, but unawareness of the impact on others is a blind spot. Pretty much the clinical definition. But I know that for the last 4 years as an introduction to new colleagues I've been explaining that very blindspot to them, with a pre-emptive apology, a statement that it's not intentional and a request that they explicitly and quickly let me know what I've done so I am aware, can apologise and we can discuss.
3) And you said 'without the autism diagnosis'. Don't be afraid to recognise that the things that were there and the description of your perceptions remain just the same today as last month/last year. So that hasn't changed, and there's no 'pass' for this. Your feelings and experiences haven't changed with that diagnosis. So don't carry all this on you. It's more that there's perhaps the chance for you to see that the intent was never there, that more overt communication may help, and that this is jsut a better understanding of why this has happened, and also likely to continue happening.

 

[Hypnalis]

@KateJones

A quick partial response to your latest post. I may have time to expand on it later.

This is an anecdote sourced indirectly (via YouTube) from one of the subReddits akin to "AITA".
It caught my eye because it was misinterpreted by every commenter - they thought the story was about a narcissist (I think - a "dark triad" trait anyway) but it was obviously an Aspie.

The story - a husband wrote a post concerned about his wife being insensitive in her interactions with their children - e.g. kids giving a present to their mother, or finding something (e.g. a wildflower), and getting an accurate reaction (present is not in fact useful, flower is not attractive enough to be worth keeping).

Husband had been scared to talk to his wife, so this had been a problem to him for years. He was given (IIRC) some tips on how to handle a mild narcissist, and finally became brave enough to explain the problem ... expecting, but somewhat prepared for, some crazy narcissist pushback.

In fact what happened is that his wife listened, said she should improve, and changed her behavior starting immediately.

Clearly the wife is an Aspie, and was defaulting to full honesty. This is not how the NT world works of course, though if you ask, most NTs claim they are honest and accurate most of the time.
Given a better insight into the effect of her behavior, she reacted correctly based on the new information, without any of the the egotistical lunacy you'd expect from a narcissist,

Two things to "take home", and one essential reminder:

1. Use clear, accurate, unambiguous, non-judgemental speech. On average we're not good at interpreting or using the kind of NT speech that's anchored in the infinite varieties of "white lies" that litter normal NT communication.
2. I hope this reinforces my earlier comment about the gap between NT and Aspie communication. You need to bridge at least 50% of the gap. It's possible, but it's a lot of work. (1) above is just a small part of it - NT's don't understand how much of what they say doesn't translate well into "Aspie"

And the reminder: if you've met one Aspie you've met one Aspie. Your husband might not react exactly the same way as the lady in the anecdote above.
It's almost certain you can improve your mutual understanding, communication, and hopefully relationship. But it will take time, and you'll both have to change.

There's more to this of course - maybe another time.

 

[Crossbreed]

I experienced his behaviour as very self focused - without the autism diagnosis I would’ve said egotistical and narcissistic.

That may ease up a little bit as he grapples with his diagnosis. It will no longer be "Why is my life like this?" or "Why is everyone else like that?"

Once he realizes that there are two (or more) paradigms at play here, he will have to recognize

1. the NT paradigm,
2. how his neurology impacts it &
3. how to "speak" NT (if only to maintain a positive relationship with you).

 

[KateJones]

Thank you all again for your replies and for sharing so much insight from your own experiences. I truly appreciate how open you have been on what are some very personal insights and I am taking time to understand your replies and see what is next for us on our journey. Again thank you!

 

[Hypnalis]

Realistically how much positive impact on such a dysfunctional situation is the acceptance of the diagnosis likely to generate through new ‘coping strategies’?
All thoughts gratefully received…

You're nearing the difficult part of your journey.

As you'd expect at the start of an epic journey, there are no certainties, including the outcome, except that unknown risks and unforeseeable difficulties lie ahead.

That's not a joke BTW - among the risks is that you could blow up your relationship by accident, while genuinely trying to improve it.

In my limited experience (I've been here a little over a year) most people in your situation who get to this point disappear from the forum forever. Naturally this makes me reluctant to engage in any depth.

On the other hand, I know (100%) that Aspies are generally not "vampires" (like psychopaths or narcissists), and I know we can learn. But I also know we have a tendency to "turn away" from human issues and difficulties ("auto" is Ancient Greek for "self" - I don't think it got into the label by accident). Avoidance is potentially corrosive in the longer term.

I suggest it's time for you to take one step into planning. Consider what you might be able to reasonably achieve, what tools you and your husband might be able to use, and what pre-requisites there are for the two of you to actually achieve mutually beneficial changes in your relationship.

You can't make an overall plan IMO - it's not that kind of project. But I suggest that you can't even decide if you want to start until you can see a few steps forward into the unknown territory.

 

[KateJones]

I agree we’re at a very difficult point in our relationship. There is a significant gap in our ability to effectively communicate with each other and we are lacking clarity on where to start. At the moment it feels like we are not aligned, we don’t have a shared common understanding and we’re really not hearing each other. It’s highly stressed and dysfunctional. He has started working with an autism experienced counsellor but as was the case with his diagnosis journey he’s keeping me at arms length. I understand he needs to find clarity but it’s making it hard for me to build my understanding and work out how/where I can help him and us!