Being Me Again! — in My Neurodiverse Relationship

 

First published 2019. Revised 2021 – previous references to Asperger’s Syndrome changed to reflect allyship with the autistic community and new information and perspectives about the work of Hans Asperger. I respect the continued use of this language for anyone else, indeed it’s still used by my family members as it was their doorway to this aspect of their identity. My story includes extracts from my journal (in italics) between December 2014 and May 2018 and a 2023 update at the end.

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Introduction

The best way I can describe what happened to me in my relationship is a slow and silent extinguishing of my soul. At one point during my recovery, Pete asked me ‘what happened to your sparkling eyes?’ Over the years, the essence of me dissolved. I used to be a vibrant, sociable and spontaneous woman, and she disappeared.

The last five years have been the hardest of my life since my husband, Pete, discovered he’s autistic. I subsequently discovered I was experiencing a related reactive disorder known as Cassandra Syndrome, a collection of symptoms that can develop from persistent lack of emotional reciprocity, repetitive psychological stress, fixed thinking/behaviour and social isolation. It manifests as deteriorating mental, emotional, social and physical wellbeing, unconsciously taking on the traits of autism, self-doubt and a distorted sense of self. Living with an autistic partner can be really difficult to describe to people – the words never seem to portray sufficiently the reality of it. Partly, because it’s many small things that on their own, when you say them, don’t sound like much and also because the person everyone else knows isn’t the person you know at home. Another reason we hide is because once we know about autism, it’s not our secret to share and many diagnosed late don’t want to be ‘out’, so their partner has to hide that part of them too. Knowledge, understanding and helpful support from GPs and professionals for the specific circumstances and impact of our neurodiverse relationships is difficult to find.

Let’s go back to 2014 when I’d been married for 15 years.

The Elephant In The Room

‘What have you got to complain about?’ my inner voice chides, when cyclical unhappiness surfaces. Looking back, I can see that about every five years I’ve felt in crisis. I pick myself up, try harder and carry on. My husband’s, ‘you’ve got everything you need’, reverbs as I attempt to make the case again for more time together and more connection.

I thought knowing about autism and neurodiversity would make it better. I’ve been reading books on autism and relationships for six months to find the answers. There’s no magic wand. This isn’t going to change. Autism is here to stay along with its, ‘different way of perceiving, thinking, learning and relating’, to pretty much everything (Tony Attwood). I’ve tried to like it but it totally sucks right now.

When I return from being out one day and Pete approaches me for a hug I ask,

‘Are you hugging me because you want a hug or because you know that’s what you’re supposed to do when I get back?’

‘I don’t think you want to know the answer to that question’.

The devastating part is that you can’t unknow this stuff. Pete always said asking questions would open a can of worms that you can’t put back inside. He never wanted to do it because he was scared it would change him…it was me who was convinced whatever we’d find would be useful and we’d be better for it. How wrong could I have been?

23 December 2014

I don’t know if writing this is brave, foolish or just honest. Lately I’ve had some of my clearest thoughts in the dark of night, but in the cold night of day, you put on the mantle of daily life and try to forget what you thought. If I finish this before the sun comes up perhaps I’ll be brave enough to share it. I think I owe it to myself. Who’s the real me right now? Writing it down makes it real. I haven’t really said it aloud yet. I feel a fraud. I have a Christmas jumper with ‘magic and sparkle’. It’s one time of the year you know how you’re supposed to feel. But I’m just not feeling very merry this Christmas. This year we discovered the elephant in the room. Pete is autistic. Its camouflage has been so good we’ve missed it all along. It’s not the kind of thing you can tell people very easily. No one is ill, there’s nothing different to see. Two weeks of holiday lay ahead and I have no idea how to pull the magic Christmas out of the bag.

11 January 2015

Five years since I wrote in this journal. I’ve not written for a long time about us but I think I need to, to keep things straight in my head.

Now we know why we’re so different. We know what causes Pete’s anxiety, focus, withdrawal. He doesn’t see or feel things the same as I do. I’ve realised how bad things were for me. In many ways I have a wonderful life, but my needs have been pushed to one side.

The boundaries of a healthy relationship have been trampled on and I need to work on that. I didn’t even know! What on earth have I taught my daughters about relationship?

It’s down to me to take control – I have to rediscover me.

It’s clearer to me that Pete really doesn’t see or account for my thoughts and feelings – I’ll have to take responsibility for those myself. Decisions…

1. I have to change. Pete won’t.
2. No expectations.
3. Meet my needs.

Some reminders so if the going gets tough I remember why I have to find another way:

• Rushing home to get to bed with Pete by 10.30pm
• No housework when Pete’s home
• Sit a particular way and feel lonely there even though we’re sat right next to each other
• Be a good housewife and never feeling good enough
• Not socialising much because I tried not to need it, like Pete, but I’ve slowly died inside
• Justifying where I’m going and when
• Endless hours spent on special interests and no time for us
• Letting girls have PJ days difficult because Pete confused by it
• Fitting in with Pete’s fixed routines and ways of doing things
• Conversations cut short
• Emotions ignored
• Opinions overlooked
• Only wearing what Pete likes and changing several times a day to get that right
• Cold in bed for years, not believed and not able to make changes to resolve it
• Pete withdrawing for days at a time
• Feeling like I’m on 24/7 high alert to avert crises like running out of peas!
• Famine of fun, laughing, cheerfulness and spontaneity
• Pete not knowing what to say to the girls or what to do with them
• Rarely spend time together as a family and when we do it’s difficult
• Holidays at home or away a nightmare
• Black and white – no grey, no maybe
• Repeating myself to try and be understood
• Wants us to share the same space but not really do or be together
• Feeling like I’m walking on eggshells all the time and scared to make changes
• Questioning my own sanity
• Don’t know my own preferences anymore
• I haven’t cried for more than ten years

Grief moves in for several months and visits regularly for much longer. I’m grieving my husband, yet he sleeps beside me. I’m grieving my marriage, yet we have decisions to make. I’m grieving family life but there’s still packed lunches to make and children to parent.

Lucky for me there are six stars in my darkness who have also lost their sparkle, six incredible women I met at a workshop a few months ago, plucked from different counties and countries and pulled by the same circumstances into a new constellation. We’ve begun to journey together and they’re keeping me sane.

Apparently the first thing we need to do is self-care. What the heck is that?

Sowing Seeds Of Self-care

16 January 2015

Pete’s in shutdown this week. We sat together watching TV at the end of the week and he said ‘I haven’t seen you all week and it’s not felt like we’re together in a week when I’m falling off a cliff’. He’s often used that analogy and said he needs me to keep him from falling off.  

He’s lost his bearings. I help to keep his bearings. I’m an anchor point.

In being this for Pete, I’ve lost me. I’ve fallen off the cliff!

I’m working on keeping my energy cup ¾ full which one of the books recommended. Letting the harsh words go is another thing I’ve been working on.

Since Pete’s diagnosis, I’ve realised that we’ve both been compromising way beyond ourselves to try and be who the other one needed. In doing that, I’m more unhappy and Pete’s more anxious.

In other news, this self-care malarkey is brand new to me! I’ve unwittingly been operating on empty for years. On ‘no fuel’, stuff still gets done but the unwelcome side effect is feeling resentful and frustrated. Apparently, I’ve stopped meeting my needs in favour of meeting everybody else’s – er, I thought that was being kind? I have worked out though that living with Asperger’s and extreme anxiety is draining and exhausting – they empty my energy tank fast – so I need to fill my tank even more than the average person to get well again and stay well! I’m walking more and beginning to reconnect with friends. Every self-care step is so difficult. I’m not used to doing anything just for me. I feel guilty and Pete’s not supportive because he was fine and now I’m, ‘changing everything’. I’ve learnt mindfulness and find it works best for me on the move outdoors. I’ve started journaling again and rekindled my love for colouring and creative photography. I’m listening to more music and noticing it has a massive impact on my mood – I’ve made a recovery playlist. I’m noticing that I feel happier and less resentful from doing these activities.

The most significant self-care seed I’ve sown? Planning things to look forward to – one a month – including weekends away! When I’m away I can breathe. I relax. I laugh. I find me.

I’ve Nailed Hope In A Coffin And Buried Her

I hadn’t fallen to the bottom yet. When I was away earlier this month, I realised that I felt sick when I thought about returning home and since I’ve been back, I notice it every time I’m out and think about going home. I’m not me there. I’ve arrived in a place called Hopeless and it’s a very physical experience.

11 March 2015

I’m not ok. I think I’m suffering physically from stress now and some concoction of depression and anxiety. Upset tummy, forgetting things, not sleeping well, headaches, close to tears, can’t relax at home, unproductive, tired, sad, negative. I’ve run out of answers, I can’t mend this, nothing’s working now. Today it feels like I’ve nailed Hope in a coffin and buried her. I’ve contacted counsellors. I’m reducing my commitments with immediate effect.

25 March 2015

I’m sitting in the sun at my best friend’s house. I needed to get away. I’d like to convert a room at home into a room for me. I’ve realised I need somewhere to be me, where I can relax. One day last weekend, Pete was out for a whole day – what a difference it was at home – more relaxed, spontaneous decisions about what to do, then just did them in a relaxed fashion. I was also reminding myself that his fixed views moulded me, fabricated something that isn’t free. I have to find me – my needs, my preferences, my views.

Two professionals have encouraged me to start taking anti-depressants. I’ve read a lot about them. I’ve decided I want to feel and face life’s emotions and pain full on, alongside some professional support and increasing my self-care. It’s taken us years to get in this mess and it may take us years to unravel it and find our way out!

I’m living two questions.

Who am I?

How do I be me with you?

It’s Like Air For Me / There’s A Knife In Me I Can’t Get Out

I’ve created a room at home just for me. A sofa to relax, a table to journal and create at, knick-knacks that I love, that I can change and move around as much as I like.

None of the many changes I’ve made in the last few months feel small. I’ve had to muster significant courage for every single one and I’ve come up against equally significant resistance from Pete to the changes I had to make to be me again. Right now he’s the enemy or, at least, autism is and I hate that. Change can be one of the most stressful things for someone who’s autistic and it scares the hell out of me too because I know what the fallout will be for each and every change I need to make. I’m creating circumstances that increase Pete’s anxiety. Whilst I put my world back together, Pete’s is fragmenting into pieces. I’ve decided to wear what I like as it’s been one of the biggest compromises I’ve made over the years. For Pete it’s like, ‘being boiled in oil’. It’s been 47 days of hell since I started.

I hurt if I change. I hurt if I don’t.

4 June 2015

I’m not sure that I can really be me with you and I’m not sure you can really be you with me. At the moment Pete feels like, ‘there’s a knife in me I can’t get out’.

This is Pete’s version of emotions – he feels and describes them very physically. I’m beginning to understand that his sensory world holds his life together. It’s his primary language for reading the environment and world around him when he can’t see or use emotions or words to join the dots. I’m turning that completely upside down.

However, the recovery journey has begun and I’m committed to being me, even if it means more obstacles ahead.

Alongside self-care, I’ve begun to create healthier boundaries. The idea of disappointing someone is totally alien but you know what I’m discovering? Life is amazing when you know what boundaries you want, communicate them clearly and hold yourself to them as well, without being overly concerned about the other person’s reaction. It’s validating, liberating and I’m beginning to feel more in control of my life.

One of the most significant parts of myself I’m having to look at is my addiction to ‘helping’ and people pleasing. What’s totally unexpected is that when I care for me first, I am a better person – mum, wife, friend. Every other hat I wear is better. I’ve also realised I’m a serial conflict avoider which has been a breeding ground for strategies of extreme flexibility and compliance.

I felt guilty going away for the weekend at first, I don’t anymore. I’ve told Pete I need to go away every 4-6 weeks to be able to live with him which feels odd but it’s part of my, ‘how do I be me with you’. I’m beginning to let go of what I thought life should look like so I can live in what’s actually happening but I want Pete to change too.

How Can I Be Me With You?

As the year’s gone on I’m beginning to sparkle again, and I wonder if I could possibly recover fully, totally reverse Cassandra Syndrome. Whilst I’m beginning to create a very sparkly life when I’m away and with others, it’s a different picture at home.

6 October 2015

Pete feels like he’s drowning in the changes I’ve made. Virtually no conversation as he’s in withdrawal meltdown a lot of the time. At best, Pete’s in the same room as me and polite. At worst, he separates himself and I feel ignored. He can only survive now. Pete loves me but he has virtually no means to relate to me. In the summer he said he doesn’t recognise me at all. I’m a completely different person. For Pete life is all about fear and survival. For me it’s all about love and adventure. His demands are like poison. They will kill my flowers and dry up my roots. I can’t go back now.

Change is great for me, but Pete and I are more disconnected than ever. I’ve lived the question: ‘How can I be me with you?’ for months now and I’m beginning to hear an answer. 

I don’t want another year like the last one. It must look different for me by the end of this one. I’ve hit a recovery plateau. Weeks of ‘radio silence’ and ten days over Christmas with virtually no interaction have taken their final toll on me. I’m resuscitating myself and yet can’t be fully me, recovering me, sparkly me… at home. I don’t want to leave, but I’m too unhappy.

Decision Time

I never imagined my marriage could be turned totally upside down. And yet, here I am, New Year’s Day at 6pm, sat on the sofa next to you, about to speak the hardest truth I’ve ever spoken. I feel physically sick. I know, deep inside, though my heart is completely breaking right now, I must say it. I’m beginning to love myself back to life. I love you. The problem is I can’t find any more ways of how to make that work together without hurting us both. You’re my soul mate and the one I want to talk to about life stuff. It’s decision time.

The decision is to love. The decision is to say what I feel without giving any answers or solution. The decision is to speak without blame. The decision is to listen without judgement.

1 January 2016

Tonight I spoke my truth.

“I need to speak from my heart and also in a logical way you can understand. I’ve tried to make things work. I’ve done all I can to recover but I can’t sparkle here. I don’t want to leave you or divorce. I love you. I won’t abandon you but I need to live somewhere else. I’ve run out of ways to help us and be me.”

Pete shocked. Won’t work. He won’t survive it a second time. His long-term security jeopardised. Would affect family. Can’t do it. He wouldn’t support me in a different house. He’d be more ill than he is. He wouldn’t be able to work. No, you can’t leave.

I listened and I cried. Thank you for space and time to talk. Thank you that I listened. Thank you that I didn’t judge myself or how he replied. It’s very hard to knowingly hurt someone and not just say what makes it go away or makes it better.

I’m prepared to stay married and be ourselves, in our own spaces.

Options from Pete 1) separate houses 2) divorce 3) have the Pete you need.

Pete said he cannot do first option since marriage equals same house.

He said, ‘I can’t lose you’.

2 January 2016

The morning after. Pete wanting to know what he needs to do to keep me here but will also change the finances. Meltdown. Logical and practical response. Difficult morning of tension but I didn’t judge or try to fix.

This afternoon, Pete researching ‘living with neurotypicals’. He found a table that shows the potentially destructive impact of autism on a neurotypical partner. He recognised himself. He began to know the effect on me and what I’ve been trying to survive and recover from at the same time as trying to be me.

I finally feel validated in what I’ve been trying to share, say and explain for the last 18 months. I agreed not to plan to leave and give Pete a chance to learn more/stop the destructive aspects.

In my heart I knew there was a better way ahead if we talked than if I imagine and plan an alternative or exit – a fait accompli. One step of the journey at a time. Pete would also, ‘let me go’, if that was what I decided I had to do.

Pete said his autistic mind said to change the finances, but his heart said don’t.

My recovering brain said figure out how to leave but my heart said, ‘tell him how you’re feeling/where you’re at’.

We’re going to work together through the list Pete found, a list of 31 traits of autism. Pete hoped he’d recognise himself in a few and he recognised them all. He asked me how many affected me. He hoped it would be a few – 27 out of 31, 18 badly.

Sparkle Is So Fragile

Since January, Pete’s been working on some changes of his own. Some have stuck, some were too difficult.

13 March 2016

Sparkle is so very fragile and I had to work hard this week to find it. Listening to U2’s, ‘Sometimes you can’t make it on your own’ – I can’t and I need to work hard to know who my supporters are. I can’t change Pete, I can only change myself – I’m being as patient as I can, but I’m not denying my feelings either.

21 March 2016

Becoming more confident. Making my plans. May be inconvenient or difficult for others but that’s ok. We’re both doing the best we can, when we can, to meet each other’s needs.

23 March 2016

I’m always stunned when I return to this journal and see the same cycles. When connected to Pete the disconnects are so quickly forgotten and then wham! another one. I find it so difficult when Pete becomes unreachable. It’s unpredictable and can be sudden and so deflating. I’m getting better with how I respond. It’s like ignoring but I know that’s not what it is. Reattaching and reaching him again isn’t easy. I’d say I’m ‘living with’ not ‘suffering from’ Cassandra now… it lurks when I’ve not paid enough attention to my sparkle.

8 May 2016

Every month, Pete’s asked if he’s doing enough for me to stay.  We’re doing much better than we were in January. Still really tough holding on to my sparkle. Self-care isn’t sufficiently integrated or automatic yet. I still forget it and flounder when Pete ‘disappears’.

I’ve got to keep the cup full.

Sometimes, I’ve been in almost daily contact with the women I met at the workshop 18 months ago. They are a lifeline, an intravenous drip of constant and uplifting support that boosts confidence when any of us come up against another recovery obstacle or life throws us a curveball. In fact, we’ve called ourselves Sisters of Sparkle! Sally, Elizabeth, Rose, Ellie, Jane and Polly – they are the ones who totally get it without needing to explain anything and we sparkle together with total ease!

25 December 2016

Writing this entry in a hotel room in the French Alps – here with youngest son only. Pete’s at home and older daughter is with boyfriend. An intention I set last January to be away next Christmas has been realised with a beautiful skiing adventure. My son loved skiing. I hiked and laughed and sang and chatted and danced. I’ve relaxed in a way I don’t at home. Beautiful Christmas. This is my kind of heaven and Pete’s kind of hell! ‘The middle ground is still special’, as Pete said today, but can’t do it all the time?

Here’s the crazy thing! I thought we were at least the same kind of plant, from the same section at the garden centre. We’re not. We actually need entirely different growing conditions to thrive.

Brutal And Liberating Self Discovery

It’s been a year since ‘decision time’ and I feel different. Something has shifted and I realised today that Acceptance has moved in. She’s visited occasionally in the past and then something else happens and she’s gone again, but it’s different this time. I’m me and today I also see that I can be me with you and I don’t want you to have to be anything other than yourself either.

17 January 2017

I’m married to an extreme introvert who is ever ‘doing’, is ‘allergic’ to people, is generally always a little anxious, sometimes very, and for whom each day is, ‘just another day’.

Reversing and overcoming Cassandra Syndrome has been a labour of love – a bold yet gentle re-direction of love towards myself. Recovery road was not a pretty meandering country lane. From all that I read, surviving and coping seemed to be the best I could hope for if I stayed. Despite reading copiously, I didn’t read anything suggesting I could overcome it and really thrive in my life unless I left to find ‘normal’.

I’ve realised that I brought a whole host of my own baggage, fears and insecurities to this relationship that also contributed to my experiencing Cassandra Syndrome. And Cassandra Syndrome doesn’t affect every neurotypical or non-autistic spouse in a neurodiverse relationship. And I’ve since had autistic clients recognise the symptoms in themselves too… so the situation is more complicated than blaming autism. Autism alone is not an answer or explanation for it and we do ourselves and the autistic community a disservice when we do that. Leaving all the blame and responsibility for what’s difficult at the door of autism limits the opportunities for healing, change, growth and possibility. I’ve needed to learn about relationship dynamics, expectations, trust, wellbeing, trauma, nervous system, communication and wellbeing too. Looking at myself and our relationship through all these different lenses has made the difference between us walking away from the relationship and continuing the journey together.

The impact of unhealthy relationship dynamics and unknown neurodiversity is reversible… for both partners. It doesn’t need both partners to be on board for significant change and improvements to be made. The first step is to begin to say Yes to yourself… gently redirect attention towards yourself from all the places you’ve been directing it up to now.

Love has an abundance of unconventional ways when we’re open to seeing things differently and seeing different things. This is brutal self-discovery. It’s totally liberating though. The way of peace isn’t always peaceful, internally or externally, but the journey is worth it.

As I directed love towards myself, my love for others expanded too. As I stopped forcing myself to fit a certain mould, I couldn’t ask others to either. As I started being me again, I couldn’t ask anyone else to be anything other than themselves too. If there are no ‘shoulds’ for me, there can’t be ‘shoulds’ for others. If I can say ‘no’, then so can others. It’s a whole different direction to live life from. When you’ve loved yourself back to life, you have a heart for loving others into themselves too. No more defence mode, no more masks, no more ‘fitting in’.

After ‘decision time’, Pete and I lived a space between stories that created the emptiness into which a new story could arrive. We lived two years there.

What are the conditions for living between stories when you’re two very different plants who need very different growing conditions to thrive?

Between stories has no timescales and it’s ok to not know. In time, we retired judgement and control, in all their obvious and subtle forms. We lived questions slowly and compassionately until answers we could both live with presented themselves and then lived bravely into those.

New healthy habits and thoughts that cultivate self-worth, happiness and love, combined with a sustaining rhythm of self-care and both of us doing the best we can to minimise the potentially destructive aspects of our own personalities on each other signal to me that Cassandra Syndrome is now part of my past.

When I hear the faint whispers of boredom, monotony, irritation… it’s a sign that my sparkle needs a top up and that’s totally in my control these days!

7 May 2018

A miracle of a day at the beach together. I never thought I’d be bringing Pete to this place I love, where I sparkle so easily. On the way back:

Pete: ‘If we’re home in time, I’ll go for a cycle.’

Natalie: ‘If we’re home in time, I’ll not go for a cycle.’

Pete: ‘Will you relax outside and do some dreaming?’

What a reply!! Like angel voices – such a difference from the comments and judgements I used to get if I suggested doing something ‘unproductive’. It feels like separate circles of a Venn diagram I drew years ago, to show Pete what our relationship felt like, are moving towards each other and finding a healthy version of overlap.

Recognise yourself? I hope my story can shine a light on your dark path. Trust that with small and courageous steps you can relight the barely glowing embers of your soul that wants desperately to shine… therein lies your happiness… it’s time to be YOU again!

When I renewed my marriage vows with Pete in 2013, to celebrate our fifteenth wedding anniversary, I could never have imagined the five years ahead of us. Neither can I now. Who knows what’s ahead. What I do know is that I have powerful, healthy and happy ways to live there, no matter what happens.

END

January 2023

Who knows what’s ahead indeed!!.. another five years have unfolded since I wrote and published this chapter. Five years in which I’ve lived the next questions:

How do I be even more of me?

How do you be you with me?

How do we be us?

Five years in which I’ve continued to become even more of me, journeyed my own neuro-identity and sensory experience and navigated the edge of my relationship with Pete on two more occasions. More old hurts are healed, incredibly Pete’s become a sprinkle of sparkle partner now we’ve discovered entirely new ways to ‘together’ – thank you Covid! – communication has continued to improve between us and Pete’s become an emotional support to me in a way I’d have previously believed impossible. Our family has navigated challenges in better ways together and my daughter is navigating her own neurodiverse relationship with some of the tools we’ve learned which was exactly my hope back in 2014 when my world was turned upside down. It is all a beautiful adventure. It doesn’t mean there aren’t still challenges and there are still some unresolved issues that we take off the shelf when we have capacity to move them forward a little at a time. We have both changed and we have very different ways to travel all of this now.

Note: Pete continued to decide that professional support isn’t for him and now I realise he’s been changing in his own way, ‘at the pace of a snail’ as he always said he would – of course it hasn’t look like how I do it! – and I haven’t let that hold me back from becoming more and more of me and stepping towards more and more of the life I desire to experience.

A few words from Natalie’s husband, Pete (2018):

I now understand that I provide insufficient information in situations that have emotional content and this has the potential to be damaging to Natalie, and was for years until I understood the autistic characteristics. It was never because I didn’t care. I loved her to the end of the world but I couldn’t get it out of my body properly.

Natalie working on herself, validating herself and meeting her needs in the way she did, communicating it to me with sensitivity, respect and care had the knock-on effect of validating me too, and our differences.

I’ve modified my life to avoid potentially destructive communication and I’m less threatened because Natalie’s happier.

We’re stronger together. We don’t always understand each other and we’ve found you can be fantastic together without that.

A few words from Tony Attwood, Clinical Psychologist and Author:

The journey through life with someone who is undiagnosed autistic can be a lonely journey without a map. Natalie’s story describes how to achieve a sense of self-direction and to eventually share the journey together.

Next Steps for You

If anything from my story has resonated for you and you’d like to turn your own wheels of change in your relationship and your life, there’s a way to access coaching with me that’s perfect for you!

Discover more about opportunities for Private Coaching and Coaching in Community HERE and I look forward to meeting you very soon!

With love and sparkle…