Supporting an autistic spouse - help and advice wanted

The roles are reversed my wife is the one supporting me older male was tested awhile back in 70's found to have autism +dd which my dad was sure of during the 40's.I also was tested on the iq scale being around 70.I say just be with her.

Thank you for your response

I can resonate as my wife is extremely analytical and loves research, to the point where she will not stop until she feels she has all bases covered.

Your point about not knowing until hours/days later is one I will consider, as this is something I maybe do not appreciate fully as an NT.

All the best

Thank you for your reply. What is comforting is that others are going through similar experiences. It can often feel very isolated in the autistic bubble.

Some of the things you suggested are things we are also exploring, so that is good to know we are on the right path. 

Thank you again, and all the best to you and X

This is literally my nightmares, I switch between thinking I won't be believed and then thinking I am a fraud and I have somehow managed to fall into being suggested that I am autistic, when really its just other overlapping symptoms. The mind really is a terrifying place sometimes

I may not be much help to you but thank you for your post. I am now referred to a 3 year wait list for diagnosis and trying to navigate the mine field of how to 'unmask' around my significant other. We have found together (I also have a great deal of this > she does not like the sensation that she is being watched and analysed) is that I just blurt out bluntly whatever I have an issue with/feel odd about and we work backwards to thoughts and feelings slowly afterward. That gives him a heads up there is something that I need to voice, without me having to go into over-analyse mode and explain what it is (usually I have no idea till hours/days later) without him feeling the need to check in regularly. It also takes a lot on his part to grin and bear the random outbursts I have when I don't understand something, or if a noise or light is bothering me. No idea if this will work in the long run, or if it will help you. Hope you find something that helps both of you find peace within the turmoil.

I have gone somewhat into obsessing and researching and my s/o helps ground me, helps remind me that no matter the outcome, or the process, he is there for me if I need him. This alone means I often don't (in a good way).

On another note, this post has made me realise that maybe he needs support too, in dealing with the changes, that I possibly can't give him. 

GV19 said:

she feels people will not believe her diagnosis due to spending 30 years masked as a NT

I was formally diagnosed in September, and was terrified I wouldn't be believed at the assessment... but it all worked out fine. The assessors are well aware of autist masking.

Hey,

My partner (X) is query autistic. A lot of what you have said really resonated with me. X's mum sought out a diagnosis when he was around 2, however she was told it was because she's a working mum. So she was put off of taking it any further. 

I am X's first proper girlfriend. I'm a third year student paramedic and immediately started noticing things that pointed me in the direction of thinking he's autistic. I brought this up with him after about a year, he rejected the idea for a few months, and is still trying to come to terms with it now but is also fully of the mindset that he is on the spectrum. The initial hurdle seemed to be that autism, for lack of better words, looked a certain way to him and that he wasn't different enough to fit into that category. However with time, he's come to appreciate the spectrum of ways that autism can present itself in. 

Another thing that really helped was research. X is severely dyslexic, so didn't like to hunt for information himself but was happy for me to get a further grasp on it and then translate the information to him in a way that he understood. This has given me a direction that I've now become very passionate about, for example I'm writing my dissertation on autism amongst ambulance staff. I have found that it's really helped me to understand why he does things the way he does and how to therefore support him. 

X is also very good at masking, he's been in the army for over a year now (this is the reason he doesn't want to seek an official diagnosis). At work he finds that he doesn't get the support he sometimes needs because he hides how much he's struggling with something. This can reciprocate at home, where he'll internalise something until he starts to stim quite severely. I'll ask him what's going on but don't push too hard, if he's ready at that point to talk he'll open up. Sometimes he'll bring something up completely out of the blue that's clearly been playing on his mind. I think the main thing is that they know you are there for them when they want to talk.

I have a few techniques for when X is stimming or overwhelmed, but am constantly trying new ones. What works will be different for everyone. With X I find the following to help: weighted blankets; indirect touching, for example through clothing so that it isn't skin to skin; creating small circles with my finger on the inside of his wrist; letting him do whatever activity he finds calming in that moment; counting up and down slowly from ten; giving him space when he needs it and by having a specific get out jail free word for when we're out and he wants to go.

You've probably already subconsciously made adaptations to work with her since you've been together for a while. Adding a label has probably just made you more aware of it and what both of you are doing. A diagnosis doesn't change who she is, she's been diagnosed because that's already how she was.

People believing that X is autistic has also stressed him out. His mum was very supportive and almost found it reassuring that there was reasoning behind the abnormal behaviors she identified as he was growing up. His sister still denies it, it's almost like "I've known him his whole life, surely I would have known", but I think with time and an increased understanding this will change. It hasn't affected their relationship but she does struggle with some of his autistic traits, she has severe anxiety it often upsets her and causes arguments when he isn't able to empathise with her or accidentally says the wrong thing. His best friend, who he grew up with, has an autistic brother. His friend's reaction was "that explains why you get on so well with my brother" and he started to really recognise it in X. How people react will always vary based on their personal experiences. Some people might even have thought she was on the spectrum but didn't want to say anything. Try not to take it too personally, and just take it one person at a time.

Please let me know if you have any questions. Being with an AT is an unique experience in itself, so make sure to also look after yourself.

Firsty, thank you for your reply it really means a great deal.

Masking is something we have identified. As a woman, she is far better at masking than I ever realised, to the point where masking causes her stress as she feels people will not believe her diagnosis due to spending 30 years masked as a NT.

I have asked her directly when I think something is wrong, but she has fed back that she does not like the sensation that she is being watched and analysed. I can appreciate this, especially as there is some truth to the analysis as I am trying to discover what is masking and what is just genuine happiness (It is hard to tell sometimes).

thank you again

GV19 said:

I struggle sometimes to read her

This is an autistic trait

A reason you may find it hard to read her is that most autists mask... and the fact she was able to get married before being diagnosed indicates she is probably very good at it. I realised I was autistic a few years back at 50 years old, and still mask even with my non-autistic wife (albeit not as much as with other people)... it's just too ingrained.

My masking meant that my wife had no clue I found many tasks very difficult that a NT person would not think twice about (generally when said task involves interacting with other people and especially if there is potential for conflict)... EG: We both love eating out, but if I go to a new restaurant I get very anxious internally until we are safely seated and I feel I have my own space & some measure of control of my immediate environment.

We've dined at 100s of restaurants over the last few decades, and she had no idea! In hindsight we now know why (a) I always suggest going back to the same few restaurants and (b) why I'm so desperate to sit down and get my first beer into me.

It sounds like you've already started the process, but I do suggest encouraging her to discuss times when she feels anxious/wobbly/stress as they occur (once you get to time/place she feels calm/safe).

NB: My wife has been pushing me to communicate for years, but the problem I have is that I am fine/masked until I am not... as in once I start having a mini-meltdown I am so busy freaking out internally and desperately trying to think of how to escape whilst staying vaugely masked... I lose the power to communicate effectively. EG: Say there is an unexpected queue for a table at a restaurant, I am desperately trying to mask but becoming unhinged inside.

GV19 said:

I am conscious that I do not want to be overbearing by constantly checking how she is feeling, but at the same time I struggle sometimes to read her and don't want to come across like I don't care.

Have you asked her directly? (most autists appreciate directness!) What did she say?

Personally I get more comfort from knowing my wife listens/believes me when I tell her what I find difficult rather than constantly checking if I am OK. My experience though is that NTs (perhaps particularly women?) seem to need constant reminders that we love them... but autists tend to view relationships more statically (I married you because I love you... why do I need to keep proving it!?).

Best wishes to you both.