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

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.

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.