Help for partners of autistic people

I find very little help or advice for partners of autistic people.

Wherever I look, the consensus seems to be to take it all on the chin.
Even when undergoing specialised counselling with my wife, I felt like there was little empathy, space or consideration for what I was going through, as if the difficulties and pain were only being experienced by my wife and I was a mere witness to it all.

Our situation is extremely complicated. Too long to give any meaningful explanation here that wouldn't miss vital information but I'll try my best.

We've been together for almost 9 years and she was only diagnosed over a year ago. When we first met, she was going through a very hard time and it was through our relationship that she discovered she had PTSD. I stood by her side through long and thin. Her PTSD was related to a sexual attack, this had a deep impact in our sexual relationship in more ways that I can explain meaningfully. We went through specialised couples counselling, which did partially help, but we never managed to have a normal sexual life.

All this had a very profound impact on me, one that never appears to be acknowledged from her side and while  painful, it is also problematic as it is hard to discuss certain things in a meaningful manner.

For many years, we planned to buy land and self-build our own eco-home. As soon as we actually embarked on our project, all hell broke loose. Basically, the change of environment and the realisation from her side of what the project actually entailed had a deep impact on her, which severely affected our project and our relationship. I became overloaded with responsibilities and over-worked. After a few months, she got a diagnostic for autism. While this gave us an insight on what was actually going on, in a way it made things worse.

I've been doing a lot of research, and I'm very aware of the kind of impact that a late diagnosis can have. We sought specialised couples counselling, which we attended for a few months. While it did give us some tools to negotiate our problems, it didn't magically fix anything and I felt unheard in the whole thing.

Suddenly, I was in a situation in which her needs, wants and decisions changed on a daily, if not hourly basis, often in circular fashion, creating a groundhog-day -like experience. On top of this, I was often being blamed for everything that was happening and accused of saying things I'd never said. We would often reach an agreement on something, only to be overturned the following morning with her stating that she had been masking.

Basic decisions related to the project became impossible, endless discussions to nowhere. Rationality completely disappeared from any conversation, the subject shifting endlessly and conflicting, opposing opinions being presented as one from her side. I started to lose my mind as from one day to the next, entire narratives changed as if the previous one had never existed. At that point all I wanted was an impartial witness to assess who was telling the truth and where consensual reality was.

While all these episodes were going on, it soon became clear that they were autistic meltdowns. When we started identifying this, I often tried to end the discussions when they happened, as we were advised to do by our counsellor. This was not only almost impossible, it was soul destroying. She wouldn't let go of anything, however I phrased things, however hard I tried, however much I cited our counsellor's advice. All along, the discussions got more heated, with her often saying extremely offensive things and me losing my temper out of sheer frustration, feeling trapped and completely incapable of dealing with the situation, often feeling deeply hurt by her words.

Often, the morning-after was full of apologies and reconciliation, saying that it was all down to a meltdown, but these reconciliations were often presented further down-the-line as masking. These sequences of events made me question everything. I no longer trust that she's telling the truth or that I ever know what she really thinks about anything.

During this time, her confidence and abilities appeared to drop at a worrying speed. From being a capable, self-reliant person, she became unable to do almost anything on her own. She needed and sought my attention, constantly, to undertake any task. At this point, demand avoidance also became apparent. Now I was trapped in a situation in which I was constantly being asked about how to do anything, yet instantly, my advice was ignored, or the start of another pointless, meandering argument to nowhere, culminating in a meltdown.

There's a whole lot more to this story, but I guess it paints a picture.

We're now in a situation in which breaking up appears to be the only reasonable outcome for both of us, yet I feel an insane amount of pain regarding this. I love her dearly and wish I knew how to handle this situation but, however hard I've tried, I find no real support or advice for partners dealing with situations like this. As I've pointed out above, although impossible, I feel like having an impartial witness present would help. At least with establishing a base for consensual reality, as without it, it's just someone's word against another and I'm losing my mind.

Parents
  • Sorry to hear this, I get why you feel unheard, you probably are, your wife probably feels unheard too, therapy isn't the answer to everything and can make some things worse and certainly worse before they get better. I get the way a sexual attack traumatises you and effects your sex life, I felt that therapists were often overfocussed on this part of my my life to the detriment of the rest, I am more than a rape survior, the focus on it was retraumatising me, but it also meant that any efforts to deal with sexual problems were wrongly or misorrientated, other feelings got dismissed and not explored.

    A big building project is a lot of work and a big thing to get your head around and is something that breaks many people.

    I'd also say that outside of therapy your wife may feel unheard too, as someone late diagnosed myself, I know how little support there is out there. Maybe stop the therapy, or move to individual therapy rather than couples, it sounds like you both need time to come to terms with things individually without the pressure of another persons feelings to take into consideration.

  • I agree with TheCatWoman, going forward the best option might be individual therapy. Usually in cases like this the first thing I’d recommend is to find an Autism-friendly couples therapist, but it sounds as if that didn’t work well. They’re supposed to facilitate communication between both sides, not make it more difficult to do so.

    As an Autist myself, I do want to point out that it is not your job to take everything on the chin. The Autist in a ND/NT relationship does need to take some responsibility, even if there are some things the Autist cannot do.

    In regards to the differences in intimacy, there does need to be some compromise. I don’t want to get too deep into that, but my NT wife and I have a similar issue of having differences in intimacy needs, and we needed to find a compromise where we meet each others’ needs, even if not fully.

  • Thanks for your reply. Regarding the sex life, there have been many compromises, along the way. I've always been willing to accommodate. The issue is, and not specifically for this area, that I feel like every single compromise comes down to me, I'm always trying to accommodate her needs, but I see very little in return. As an example, I asked nicely to have at least 30 mins of quiet time in the morning while I had my coffee. I requested this because I was being bombarded with questions from the second I got out of bed and I needed some mental space and clarity to face the day. This hasn't materialised once in about a year.

  • We do, but I've found myself being manipulated by NT's who're aware of my autism, who use autism as a stick to beat me with, it's hard to know what's a reasonable compromise. Lots of people see compromise as losing and get really resentful about it and sulk, so it becomes do as I want or put up with me sulking and making this things you want to do as miserable an experience as possible

  • Funny, it's usually me the autistic one that needs the time and caffiene to wake up, I get really angry when disturbed by a barrage of questions, most people know me well enough to leave me alone in the mornings.

    I had another thought about intimacy problems, intimacy is something lots of autistic people find really really difficult. Sometimes our skin feels like the nerves are on the outside and touch can be uncomfortable or even painful to the point where a stroke on the arm can feel as painful as a slap. Then there's personal space and distancing, this will be different for different people and at different times, eg. if I'm feeling invaded by the world then I really don't want someone cuddled up to me. 

     Things like kissing can be problematic, some people love it, I hate it to the point of near phobia, especially tongues in my mouth! That can feel more invasive than sex! I hate the idea of someone elses saliva in my mouth.

    There can be other sensory issues with intimacy, like not liking to be hot and sweaty. 

    Public displays of affection can be diffcult too, some people love them, other really don't, I don't think it matters if you're ND or NT, it's part of one's personal culture, wider culture and things like do I want to have to adjust my pace so as someone can walk with me hand in hand? I'm naturally a fast walker and don't want to feel as though I'm dragging my partner along like an unwilling child, walking slower is uncomfortable as well as difficult.

    I also understand what you're saying about compromise, I often get caught out with it, to many compromise seems to mean I give up all of what I want so as they can have all of what they want, I was taught that compromise is everybody gives up a little so as everybody gets most of what they want. After a life time of always being the one to compromise I'm much more reluctant to do so now, which causes a whole different set of issues.

  • It sucks. You're not wrong to feel drained - it's like you're the only one rowing the boat while she's just... sitting there. That quiet coffee time? It's not a luxury; it's basic self-care. And after a year of zero follow-through, it's fair to wonder if she's actually hearing you or just nodding along till the next crisis.

    Thing is, if she's autistic, she might not "forget" on purpose - she could be wired to hyper-focus on her own stuff (questions, routines) and genuinely miss how much this matters to you. But intent doesn't fix the hurt. The imbalance is real, and resentment builds fast when you're always the giver.

    My take: push harder, but smarter. Next calm moment, say: "I need these 30 minutes like I need air - it's not optional. If it doesn't happen, I'll take it anyway: headphones, door shut, no chat. I love you, but I can't keep bending till I break."

    Then do it. No negotiation. She'll learn the boundary's real when it's enforced, not asked.

    If she still steamrolls? That's when therapy (couples, not just hers) becomes non-negotiable. You're not her carer - you're her partner. And partners share the load.

    You've got every right to want more. Don't settle for crumbs.

  • Yeah, compromises should go both ways. It sounds as if it is really one-sided. Like I said, Autistic individuals also have to take responsibility in a relationship.

Reply Children
  • We do, but I've found myself being manipulated by NT's who're aware of my autism, who use autism as a stick to beat me with, it's hard to know what's a reasonable compromise. Lots of people see compromise as losing and get really resentful about it and sulk, so it becomes do as I want or put up with me sulking and making this things you want to do as miserable an experience as possible