Living with a Neurodivergent Partner

Hello, and thanks to anyone who bothers reading this. 

I believe my partner is autistic, and he also believes so himself, but won't go to the extent to get himself referred to get a diagnosis. He has never been able to follow fiction (movie/cartoon/books), and was never able to engage in imaginary play, he has had a few areas of interest which he has kept since childhood, he sees the world in patterns and numbers, sees music in colours, he has patterns of self-soothing/stimming, he has a strong sense of right and wrong and he struggles terribly with sensory issues, including not liking hugs or touch. 

He is a brilliant person and partner in many ways: he is incredibly clever, sees the world differently, hard-working and successful in his area of work. Despite his autistic traits, he is very good with all people, but especially vulnerable people or people who may struggle to build relationships with others. Although getting very nervous and thinking about things for weeks ahead of social gatherings, he manages those situations incredibly well to the outside world, and he quickly builds relationships. Very few would ever notice him being neurodivergent. He is very empathetic, too the extent he struggles setting boundaries as he is hypersensitive to others feelings and picks up when things are difficult even before the person nearly knows the problem themselves.

The challenges we however face in the everyday are very difficult; sounds and noises (forks and knives, eating sounds, plastic or any rustling, any noises moving about e.g when in the car or walking, tapping noises) makes it hard to eat and have dinners hence we don't get to speak much as he needs to put the TV on to a maximal noise. He cannot see people with a disability on tv, because then he cannot eat anymore and will need to throw away his dinner even though he hasn't eaten the whole day and has a physical job; he feels very bad for this and don't know why this is (not sure whether this is related to autism (possibly to over-empathy?)) . He struggles with textures of food and certain smells. This means I cannot make the things that I like or know from my own traditional cooking. Dinnertime is many times a week a very stressful affair, and sadly this is often the only time we properly have together in a busy everyday.

The lack of conversation is made worse by that when coming home from work (often at 8pm after a 12-hour working day) he will then be on his phone answering emails and will often get agitated if I interrupt or say anything as he focuses deeply on one thing and cannot be dusturbed. This makes me often nervous or unsure about when to talk or even what to talk about when we even first talk. By the time he finishes, he will need to have his second shower of the night because of sensory issues before going to bed. This is how most of our days go. 

In some ways, I feel honoured that he can be a part of himself with me. The days after he came to terms with likely being autistic were beautiful; for the first time I could actually see it on him that he was autistic and it was as if he’d lost a mask and fully became himself. He has not had those moments since as he in the everyday is highly focused, determined, ‘hardened’ and emotionally unavailable. When trying to talk with him about it, he says he doesn't like the term ‘masking’ and that he doesn't see it as existing without a level of untruefulness. 

Even though I try to understand how to communicate with him, I find it hard because to the outside world and how he came across when we first met, is so different to the person I see in the every day. I know that because a lot of his work is client facing, he probably spends a lot of his energy there. There are however moments where he is attuned, present, and an amazing and sweet partner, when he has less stress in his life (holidays), or moments we go out with other people, and this is what I stay for.

Does anyone have any advise how to cope in similar relationships? I'm feeling very worn emotionally and struggle to find my space in the relationship, whilst also being respectful and mindful of his needs. 

He will not access any therapy or see a GP or any outside help. 

Thanks,

Anna

  • Does anyone have any advise how to cope in similar relationships? I'm feeling very worn emotionally and struggle to find my space in the relationship, whilst also being respectful and mindful of his needs. 

    Hi Anna and welcome to the community!

    I'm very sorry to hear about your relationship struggles.

    I recommend this book, which addresses all manner of issues concerning neurotypical + neurodivergent relationships. It also includes various exercises that you can complete - ideally along with your partner - to help both of you to make the most of its advice:

    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 would now simply fall 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. Still, I feel the book's benefits are well worth this inconvenience.

    You might also find this NAS resource helpful:

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

  • Dear Anna,

    Thank you for sharing this with our community. You may be interested in reading our page about family relationships- partners, https://www.autism.org.uk/advice-and-guidance/topics/family-life-and-relationships/family-life/partners

    Thank you Anna. I hope this helps!

    With all good wishes,

    Eunice Mod

  • Thanks so much Kate. Knowing that I'm not alone helps. It must be very difficult with only 12 foods he can eat. Thanks a lot as well for mentioning the PDA; I've googled it and a few more things makes sense now. Like you say, it is so frustrating and I am the same; there are times I flip, as it is hard when feeling you're giving so much of yourself and not getting what you need back. It's been so frustrating to see how good he is at learning new things, and really out his mind to things, but very little effort to try to understand or learn things that I think would be good for us both as a couple. Things works best if we do things how he decides and has full control; he's like that both in work and private. He does seem advice, but then again it means he's in control. I thought it was just a puzzling personality trait which makes no sense as he otherwise is so empathetic and occasionally is so sweet and thoughtful to both myself and others when not prompted. 

    Thanks again, that really helped to get another word/term to help deal with the challenges (we’re renovating our home at the moment together which is not easy for any couple but I don't seem to do anything right at the moment!). I have made myself one promise: to never go through this process again and having to cowork with him in anything like this again as it’s just too emotionally draining.

    Stress is really the worst enemy, and it sounds like we also need to set boundaries and practice Self-care to also remember ourselves. 

    Anna

  • Hi Anna

    I have a similar situation. My husband doesn't want a formal diagnosis but as he is aged 50+ we don't know what that would add to his /our life. He has done his own research and I've done mine and we adjust behaviour accordingly.

    He is incredibly restrictive with food down to maybe 12 foods so sharing a meal has never been possible in our 28yrs together. We eat at the same time just not the same food.

    I find the PDA incredibly frustrating and I'll be honest I struggle maintain calm. I can ask for something to be done but asking again after a few weeks just seems to put the clock back even further.

    I don't have  magic answer for you but I wanted you to know you're not alone in your struggles. 

    Kate