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
  • Hi   - the situation which the two of you face is challenging. If I may, let me offer you some insight as a late diagnosed person.

    For context, I am a male AuDHDer (autism plus ADHD) and also have suspected complex PTSD (from bullying and parental discipline). This was all diagnosed last summer after many years of trying to fit into a neurotypical world. I can tell you that masking is a real thing, conscious or unconscious, and it is exhausting.

    When we get diagnosed, it is common to have many conflicting emotions. We can also temporarily lose skills and our confidence, and feel we are a burden. We may also wonder who the heck we really are. It can prove really disorientating. And there is little support for newly diagnosed adults, let alone their partners.

    Some of us (me included) burn out after diagnosis. And autistic burnout is not the same as occupational burnout - it is deeper, wider and darker. A nervous system overwhelmed by what previously did not overwhelm can see almost everything as a threat.

    Our partners can feel under fire and confused, and they may also make things harder through verbal aggression (or worse). Each party retains accountability for what they say and do.

    My own marriage has been under a lot of strain since my diagnosis, and the grief and pain is raw. It's not what either of us wishes the other to suffer.

    Recovering from autistic burnout can take a long time. And not all relationships make it through.

    All relationships require mutual commitment and effort to work through challenges. Neurotypical partners would be at fault if they were to write off their newly diagnosed partners as now-damaged goods and not aim to negotiate a way forward as a couple.  Similarly neurodivergent partners would be at fault if they were to hide behind their disability and not aim to negotiate a way forward as a couple.

    Going through couples counselling, even if it hasn't resolved your challenges, demonstrates a mutual will to make progress. Getting some counselling as individuals is sound advice. Aim to remain compassionate towards your wife, and towards yourself. You both deserve to be happy and I hope you will find a way. 

Reply
  • Hi   - the situation which the two of you face is challenging. If I may, let me offer you some insight as a late diagnosed person.

    For context, I am a male AuDHDer (autism plus ADHD) and also have suspected complex PTSD (from bullying and parental discipline). This was all diagnosed last summer after many years of trying to fit into a neurotypical world. I can tell you that masking is a real thing, conscious or unconscious, and it is exhausting.

    When we get diagnosed, it is common to have many conflicting emotions. We can also temporarily lose skills and our confidence, and feel we are a burden. We may also wonder who the heck we really are. It can prove really disorientating. And there is little support for newly diagnosed adults, let alone their partners.

    Some of us (me included) burn out after diagnosis. And autistic burnout is not the same as occupational burnout - it is deeper, wider and darker. A nervous system overwhelmed by what previously did not overwhelm can see almost everything as a threat.

    Our partners can feel under fire and confused, and they may also make things harder through verbal aggression (or worse). Each party retains accountability for what they say and do.

    My own marriage has been under a lot of strain since my diagnosis, and the grief and pain is raw. It's not what either of us wishes the other to suffer.

    Recovering from autistic burnout can take a long time. And not all relationships make it through.

    All relationships require mutual commitment and effort to work through challenges. Neurotypical partners would be at fault if they were to write off their newly diagnosed partners as now-damaged goods and not aim to negotiate a way forward as a couple.  Similarly neurodivergent partners would be at fault if they were to hide behind their disability and not aim to negotiate a way forward as a couple.

    Going through couples counselling, even if it hasn't resolved your challenges, demonstrates a mutual will to make progress. Getting some counselling as individuals is sound advice. Aim to remain compassionate towards your wife, and towards yourself. You both deserve to be happy and I hope you will find a way. 

Children