Advice for how to communicate with my autistic husband at difficult times

Autistic people can sometimes feel a disconnect of expression concerning major problems, while we can react with disproportionate agitation to minor niggles and disappointments. It does not mean that our feelings are blunted, quite the reverse. Empathy in autists can be very deep, but the outward expression can differ from neurotypical norms to a considerable degree. If a close friend told me of a serious problem, my reaction would tend not to be hugs and 'there-there' type expressions, but to dissect the problem and offer advice. If asked for a hug, I would give one, though. Perhaps a direct statement of your emotional needs and exactly how your husband could meet them, might work.

Hi evkyne96,

I am glad you were able to reach out to this forum (I hope you will feel supported here).  I am sorry to realise how challenging a time both you and your ND husband have shared lately.

It sounds like both of you are trying your best to wrestle with the prospect of exploring individual reactions, emotions, coping mechanisms and practical considerations in response to multiple unknowns and potential changes to each others routines during your treatment plan.  I feel both of you will need support from each other (and externally too).

With so much loaded upon you both currently, shall restrict my thoughts from reading your post to four areas:

1) Maybe your ND husband might have difficulty accessing the category and magnitude of his own emotions (alexithymia - please see the below article) and, in struggling with that, he might take longer than you might have expected to reach a conclusion for himself - which then enables him space and energy to judge how much he can be helpful and supportive (not at all that he wouldn't want to, quite the opposite, rather; the enormity of the situation, and how much you need him, might have temporarily caused him to appear frozen, or shutdown, or less demonstrative than other times).

https://www.autism.org.uk/advice-and-guidance/professional-practice/autism-catastrophising#:~:text=Several%20autistic%20people%20have%20talked,really%20hard%20to%20understand%20it.

2) (Also covered within the above article) while not all ND / Autistic people may use the term "catastrophising"; many may recognise aspects of how this might be experienced by them too.  Our thoughts might race ahead, in an absorbing manner, as we model multiple"what if" scenarios in our thoughts - all at once.  It can be distressing for the ND person and frustrating for their non-ND loved ones when this happens.  Communication manifests in such varied ways.  Sometimes, although it may seem hard to accept, that catastrophising might really be a huge clue that your ND really cares very deeply indeed about what is happening to the people around them, they may have even leapt ahead across multiple denial / grief / pragmatic steps in their concerns - to the point where they are frantically trying to envisage / prepare; how they can play their part to ease the burden on themselves and those closest to them.  I am the ND person in my household and I have tried to encourage my loved ones to understand / interpret this feature as my actually caring about things far more than a standard hug, or other well-scripted social response etc. might more usually mean.  It is difficult to explain ...it is not always the self-absorbed "argument" (mistaken for) behaviour as potentially perceived by non-ND people involved in the situation.

3) Many ND people can be quite visual in their preferred style of learning.  The details, the facts of the matter, the schedule changes, the depth and nature of emotions, the perception and tracking of the forward plan, worrying about their likely role and the sensory navigation to be required in new environments etc. might possibly be easier to share (both directions) via constructs including: flowcharts, diagrams, calendars or planners, leaflets annotated (with your hopes, concerns, outstanding questions and support needs & maybe enable him to add his own ideas, suggestions, worries and impacts), pictorial check-in scales around feeling things, level of frustration, energy levels, or similar communication barriers or highlighting lack of synchronisation of response / processing lead times.

4) (UK assumed).  You both may already be aware of the support, guidance, leaflets and help available from the Macmillan Cancer Support Telephone service.  However, particularly when overwhelmed, stressed or upset; ND folk don't always thrive on telephone call-based services.  It might be helpful to for your husband to know the Macmillan website also offers: a) a "Chat to us" online feature enabling communication with one of their specialists who could help signpost to the appropriate support which might be welcome, and b) there is an online form on the Macmillan website which can be submitted to establish support via email.  In tough times, there is another organisation (mental health support, rather than cancer-related) which is text-based, operates 24 / 7, is free, is confidential, and the messages will not appear on your telephone bill - called Shout:

https://giveusashout.org/get-help/how-shout-works/ 

Hope you and your husband will begin to experience an easier time if things soon.

Firstly, I'm very sorry to hear about your cancer. That must be so hard for you, I hope it is treatable.

I'm not sure what advice I could give here. Instead, I was hoping to tell you something that I experienced with my wife. There was a time a few years ago that she was in trouble, something affected her physical and mental health drastically. I am the ND husband in this relationship, and leading up to that point I was the one who was her support, helping her over many years, but at the point of the situation I mentioned I had reached my breaking point. The issue I've always had is that my mind is wired to solve problems and fix things, and the health condition my wife was experiencing was something that was impossible for me to fix - it wasn't even my fault, though I would always blame myself for not trying hard enough or supporting her enough. She got better over a period of time, but I had given up, I had shutdown a lot. It then took me a long time to get over that burnout and support her in a more sustainable way.

Where am I going with this? I suppose if this is a similar situation, then your husband may be dealing with a monumental change in the only way he can think of. You said you were diagnosed a week ago, so a lot has changed suddenly in both your lives. He may be trying to work out a lot of different, conflicting emotions all at once too - something I certainly felt. However, I do believe that he should also understand that you need him too, otherwise he may distance himself too much from you. You mentioned writing to each other, if that is the way that works for you then do it, any way you can get through to each other. I really admire the fact that you're trying your best to support him during a difficult time for yourself, but you should also think about you too, be honest with each other.

I wish you well.

This is a really helpful comment and has helped reinforce that he really does care - I often get more out of him after the event of talking too so makes sense. Thank you for sharing your experience and perspective :)

I'm sorry to hear about your thyroid.

As an autistic husband, the only thing that I can really say is that things take time to sink in with me. Sometimes a loooong time. I can know the facts of the situation, but that doesn't help. I hope that he is the same and that one day the full horror of your situation will hit home and he will be the supportive person that he can be.

Thank you for your thoughts and kind words - it’s funny you say that because he has made me a playlist before completely unprompted! Maybe I should try and explore these things at the time where I feel a bit unsure around the verbal communication. We have had a chat and said it would be good to maybe start using Microsoft office to almost keep a diary as a form of conversation - which ties in with what you have said about the AI and directness of it. That makes perfect sense. Thanks again I’m very grateful for you taking the time to read and comment. It’s great to hear about a personal experience where you have started to feel better yourself, especially with a child as I imagine that has been really challenging. We don’t have children yet and it’s something I can often get nervous about - but I’m an overthinker by nature anyway. Thanks again x 

You're most welcome - and thank you for your kind words! :)

Thank you for your kind words and for taking the time to read and comment 

• Thank you taking the time to read and comment - I will look at those resources you have shared. I wish you the best of luck with your journey too x 

I'm sorry to hear about the cancer. That must be hard.

It might feel like a disconnect, but the best advice is to be direct. Write down what you need. I have read psychologists who recommend this for Non-Autistic relationships as we've been raised in a time where adverts and media, AI and google all explicitly or implicitly tell us that True Connexion is when you have a need met through telepathy. This hasn't ever been true. In truth, we wouldn't want someone to read our minds.

According to the Hemisphere theory, the "Left" is where social-linguistics is 'programmed' and the "Right hemisphere" has access to vocabulary, but this side is where we're open to receive any and all information, supposedly it's sent to the Left to organise and compartmentalise and then should be sent back to the Right for creative work.

What appears to connect most neurodivergent thinkers is a heightened sense-perception meaning everything impacts us with a greater intensity and hyper-signalling (brain running faster than we can communicate, ability to make seemingly invisible connexions), both of which tend to make daily life feel like everything is hitting us all-at-once and that's with no stress. Perhaps this changes our threshold to what we can handle psychologically, which creates a bias of what we think everyone can handle.

Most ADHD'rs and Dyslexics tend to have a heightened awareness of Left hemisphere social linguistics (like unspoken cues). But Autistic thinking includes other abilities at the expense of Left hemisphere social linguistics, which, while it has an evolutionary advantage, isn't better understood for the potential, just spoken about as a deficit. We appear fearless, but really we didn't get the memo. We appear unique, but aren't easily socially programmed. I think most of us have an added bonus of difficulty accessing the word to attach to everything going on in our head all the time. Similar to non-speaking autistics, it's incredibly frustrating. And this can go part and parcel with never being able to identify feelings, sometimes until years later. It means having intense emotions and being internally impacted to a degree without the release of being able to name a thing. And this can compound frustration. 

Your husband may want to communicate but can't. If there's stress, this can amplify it which further shuts down the ability to speak. Here is why I advocate for ancient human forms of communication through art: music, drawing, movement. Things we all can express with. Perhaps you could ask him to make you a good classic mixtape to communicate?

But also, while you might be able to bypass what is happening and be able to ID your feelings on the matter, it might be more useful for him to spell out what is happening, a chain of events. For instance, how am I feeling today? Well, it might be raining, but I'm wearing the right socks and came prepared. How do I feel about said politician? I didn't vote for them, they're making a mess of things and it's going to cost everyone. << much easier as there's no blanket feeling here, it's a big mixture of things.

I have only managed better since mid 30's and from taking time away from others to read good journalists, go to the library and expand my vocabulary. But I'm a single mum and my son is now nearly 30. I know this is hard to find time to do with many other responsibilities, as uninterrupted time is needed, though the Sunday paper can help.

Welcome to the forums and wishing you all the best, hope things pick up for you both. I am sure wiser heads than mine can hopefully share something.

Hi and welcome to the community.

i’m really sorry to hear of your struggles. Hopefully some others here will be able to share some of their own experiences and advice.

This area (improving communication with my partner) is one that, I - from the perspective of someone whose autism diagnosis is very recent - am currently working on.

I recommend this book. It focuses on helping autistic + neurotypical couples to work on their relationships through improved mutual understanding and communication, complete with exercises that you can both complete and discuss, if you wish:

Loving Someone with Asperger's Syndrome: Understanding and Connecting with your Partner

Note: the book was written when Asperger's syndrome was still an official diagnostic term, whereas this now simply falls under Autism Spectrum Disorder / Condition (ie autism). 

Caveat: when moving from discussion of one issue / scenario to the next, the author often switches which of the partners is neurodivergent (him / her), which can make it a little confusing until you've worked out who's who each time. But that inconvenience felt well worth the effort to me.

You might also find this NAS resource helpful:

NAS - Family relationships - a guide for partners of autistic people

You could perhaps also consider couples counselling, ideally led by a counsellor who is experienced in working with neurodivergent people.