A couple of years ago I wrote an article for Mamamia about my experience in finding out my husband, Kane is autistic (a.k.a Autism Spectrum Disorder or ASD). He was diagnosed in 2020 and it was the catalyst for a lot of positive change in our marriage.

I was inspired to write the article because, at the time, I struggled to find information or insights from other couples like us. Especially positive stories. And what I mean by this – is a relationship between a neurotypical and autistic adults. A lot of the things I read skewed negative and left me feeling pretty deflated in the face of Kane’s diagnosis.

I wanted to share more about what led us to seek out an autism assessment and diagnosis. How autism showed up in our relationship and how we manage these differences in our day to day lives.

Because as much as we have our challenges (and trust me, there are plenty) I love Kane and us so much.

I want people to know that a diagnosis can be a truly positive and helpful experience.

marriage-on-the-spectrum-pin

Is my husband autistic? The Subtle (and not-so-subtle) signs

From the beginning of our relationship there was always something different about Kane. I could never truly put my finger on what it was. He just had a unique way about him. But I guess it piqued my interest and well, here we are 17 years later!

I’m conscious that I don’t want to speak for Kane and his own personal experience or give off the impression that I have the answers for all romantic relationships.  These are simply some of the challenges and personal insights in our relationship.

I want to also acknowledge that in no way were any of the issues we’ve experienced all Kane’s fault. As they say It takes two to tango…

#Unfiltered 

Kane’s always been honest and truthfully, quite blunt with his opinions.

 I’m definitely not someone who beats around the bush, but Kane takes it to new heights. The good thing about this is that you always know where you stand with Kane and don’t have to second guess things. He;s forthcoming with his feelings – good and bad.

Muted expressions and gestures

Kane isn’t super animated when he talks – without a lot of variation in his tone or pitch. He doesn’t tend to use a wide range of facial expressions or gestures like you might come to expect in conversations.

It’s commonly known that autistic folk don’t make a lot of eye contact – and with Kane it was more that it was an unnatural kind of eye contact.

Without those usual nonverbal cues sometimes he can comes across as harsh, without meaning to because his affect doesn’t necessarily match what he’s saying.

Rigidity with plans and special interests

I know that money is one of those common challenges couples face and this was one of the areas that causes us the greatest friction.

As someone with ADHD, managing money isn’t my forte or something that blows my frock up a helluva lot. 

I’m a pretty easygoing person and trust Kane to lead the way with our budgeting. He’s the ‘money man’ in our household and has spent a lot of time learning about finance – particularly investing. It’s definitely an area he’s gone deep in and I’m grateful to him for our current financial position.

But as the years went on, especially when I wasn’t working full time anymore, there felt like a misalignment of expectations regarding money.

During one particular argument he told me he had a recipe for financial success and I wasn’t following the recipe! 

Being a fly-in fly-out worker, Kane also finds it tricky to assimilate back into home life on his return from site.

We’ve since learned that attention switching can be difficult amongst autistic individuals and this is likely a contributing factor.

Sensory overload and parenting 

Life with three kids is loud, messy and unpredictable at times – an assault to all the senses for anyone, especially someone who experiences sensory overload.

Compared this to Kane’s work environment which is calm, controlled and everything has a place – it’s no surprise he finds it intense coming home.

Kane can get overwhelmed with lots of clutter. I always thought he was just being pedantic about tidiness but along the way we’ve learned this forms part of his sensory profile.

As parents know, there’s a lot of moving parts and changing variables as your children grow. Throw in the fact that Kane works a FIFO roster of 4 weeks on/4 weeks off – safe to say it’s been a lot.

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With our youngest when he was a bub

Solitude

Although a social person, Kane is  a bit of a lone wolf. Fiercely independent, he recharges from time spent alone and gravitates towards activities without a lot of noise and commotion.

He would happily opt out of social events in preference of taking a nap or doing something low key.

Kane has a lots of close friends and is generally pretty good at staying in touch with them all.

But where I would feel energised from social interactions and seeing my friends, he would feel worn out from the intense sensory input of some social situations. So, he doesn’t really buy into pressure to see them if he isn’t interested in participating in whatever they’re doing.

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The pathway to diagnosis

During the turbulence of our marriage I found myself debriefing and troubleshooting the recurrent issues we were having in sessions with my therapist.

Being aware and informed about neurodivergence, she picked up on some of the patterns in the difficulties I had with mine and Kane’s relationship.

My psychologist was actually the first person to suggest he may be on the autism spectrum.

After around a year of these things arising in our sessions, my psych suggested it may be worth investigating neurodivergence through an official ASD assessment/diagnosis.

Benefits of an adult autism diagnosis

The first thought I had in response to my therapist’s suggestion of an ASD assessment was, ‘but why?’ Surely if Kane had gotten this far in his adult life without knowing whether or not he was autistic, there wasn’t much point in an official diagnosis.

But she opened my eyes to how knowing what was underlying would improve our understanding of each other.

An official diagnosis can help with:

  • Modifying expectations
  • Improving communication
  • Troubleshooting recurring arguments
  • Alleviating sensory overload
  • Improving quality of life and relationships

Initially I was reluctant to approach Kane about whether he would consider the assessment. Would he be offended? But when I mentioned it, he was actually really curious and keen to investigate things.

It speaks to the kind of person he is- never one to buy into taboos or stigmas. He really marches to the beat of his own drum and doesn’t GAF what other people think. It’s one of the things I love about him.

Ultimately though, he wanted to understand himself better and answer some of the questions that had arisen throughout his life about differences he’d noticed.

Getting an adult diagnosis of autism in Australia

The process for diagnosing autism in adults in Australia is fairly straightforward, requiring an assessment by a psychologist qualified to assess and diagnose autism.

Unlike with children, who require multidisciplinary input including a paediatrician.

My therapist recommended a suitable psychologist and we were able to self refer. It isn’t cheap, with most providers charging around $1500 for an assessment.

Most practices will inform you of their fees upfront and whether you can claim any of the cost back from Medicare (note: you often can’t)

From memory it was 3 sessions total. The clinical diagnosis of ASD in the Diagnostic and Statistical Manual of mental disorders (DSM) outlines the different criteria needed to fulfil a diagnosis of autism. So the assessment largely explores different traits that may or may not meet these criteria.

Kane had to fill in some questionnaires and obtain history from his parents about his childhood. I also attended a session to provide my insights and describe some of the unique challenges in our relationship too.

At the end of the sessions the psychologist was able to verbally give us confirmation that Kane met the criteria for level 1 ASD. It took some time for the formal report to follow though.

autism-in-marriage

My husband is autistic…What next? Responding to diagnosis of an autistic partner

I still remember the drive home after that final appointment with the psychologist. I had mixed emotions.

I was relieved to know there was potentially a huge reason for the disharmony we were experiencing. And it gave me hope that there were strategies we might not have tried.

There was grief that our relationship may never look a certain way. I realised that I was always hoping things would change, which in reflection, sounds a bit naive and unrealistic…but I know I’m not alone in that feeling.

I also felt overwhelmed at the thought of learning all the things about autism and what this meant for our future. I knew very little about ASD or the implications in a long-term relationship or for our family.

Find a positive perspective

Something I’ve learned about the autistic diagnosis process is that it’s a deficit-based assessment. This means that the focus is on the difficulties or absence of traits autistic people experience over a range of areas. As a consequence, it can feel like there’s something ‘wrong’ if you don’t meet certain criteria…

I heard in a podcast renowned couples therapist Esther Perel talk about how we are so often initially attracted to people opposite to ourselves. Then we spend our whole relationship trying to change them into us.

It is something that has really stuck with me because it feels so true. I make a point of reminding myself of the things that brought Kane and I together. Instead of all the things that I think are working to break us apart.

I remind myself of the unique strengths that Kane has that attracted me to him in the first place – I’m sure many of them tie into his neurodivergence.  He’s honest, confident, loyal and adventurous and most of all our values align.

We’ve learned a lot about managing neurodivergence in our relationship and household but trust me – we definitely don’t have it all figured out.  With ADHD, I’m like my husband’s worst nightmare sometimes! So these are a personal insight into the things that help us in our relationship post-diagnosis. But we aren’t experts and are still learning and evolving too!

Tips for navigating neurodivergent relationships

1. Clear communication

I think all healthy relationships hinge on communication skills. Learning your communication differences is pivotal in finding a way forward, together. I believe this applies to all intimate relationships, really.

I used to take offense to Kane’s style of communication, I thought he was being insensitive and rude.

Learning about the different ways we communicate means that I’m less likely to take Kane’s bluntness personally. This leads to more rational conversations – especially about more difficult topics.

Being more straightforward in my own communication style has also been incredibly helpful.

I try not to rely on Kane interpreting my non-verbal communication, social cues or body language because they aren’t his forte.

And I gotta say, being open and honest about what I need has been a learned skill. It’s uncomfortable saying what you want or need because it requires a deeper level of vulnerability. But it helps keep communication clear and avoids misinterpretation by both parties.

A couple’s counsellor recommended the book 7 Principles For Making Marriage Work. We actually found it so useful for improving the way we communicate. It’s broken down into concise chapters with exercises and examples for each topic.

Sometimes books aimed at non-autistic couples can be unhelpful (even damaging) but I found it wasn’t a prescriptive book. The focus was uniquely about the universal features found in successful relationships, neurodivergent or not.

seven-principles-relationship-book

2. Identify and manage your needs

Being super clear on what your own needs are, especially within your relationship is paramount in making progress together. If you don’t know what you want – you’ll forever be reactive instead of proactive.

The book The 5 Love Languages is a starting point for discovering what you look for in your partner when it comes to demonstrating love.

It explores the ways we express commitment and includes words of affirmation, quality time, physical touch, acts of service, and receiving gifts.

For example: I love receiving gifts. For a long time I resisted it because I thought it made me seem materialistic and superficial plus Kane resents buying gifts because he loves saving money (lol). But I’ve come to accept and appreciate that it’s one of the ways I enjoy receiving affection and love from my romantic partner.

I wrote Kane a list of different ideas of gifts that I would enjoy – from something as simple as a love note or washing my car for me through to more extravagant purchases.

It’s up to him what he chooses to gift me but it’s given solid examples to go on. Recently the simple act of him buying me a chocolate cannoli when he was out grocery shopping made my heart sing.

3. Suss out sensory issues

A sensory profile helps in discovering what unique sensory needs you or your partner may have. On the spectrum or not, humans all have specific sensory preferences. 

An Occupational Therapist (OT) can help you to get clear on your custom sensory recipe and is the first step to develop strategies for managing these in everyday life.

For us this looks like:

  • Better storage options to help with tidying and organisation

  • Designated areas/zones that stay mess-free (ideally)

  • Planned ‘reset’ cleaning times where we can give the house a once-over as a family

  • Regular decluttering

  • Robot vacuum to help keep the floor clear of sand/dirt

  • Loop earplugs/noise canceling headphones inside as needed

  • Scheduling regular exercise and self-care to help with emotional regulation

Tip: OT is something that you can potentially receive funding for through NDIS.

neurodivergent-marriage

Our neurospicy fam

4. Seek neurodivergent affirming support

I’ve heard many stories of couples where one or both partners is autistic, who have seen a couple’s therapist and the outcome felt unhelpful or detrimental.

It is so important to seek the support of service providers and people who understand the differences seen in neurodivergent people and relationships.

I feel so grateful that my psychologist has experience and understanding of autistic people because she helps me to navigate both my ADHD and Kane’s autism with practical solutions.

In my experience, this also extends to family and friends.

Be mindful with who you’re venting/discussing your relationship with.

Seeking validation or feedback from a friend or family member who has little experience or insight into autistic minds can be incredibly unhelpful because they usually offer neurotypical solutions.

5. Embrace the unconventional

I think the way forward in ND/NT relationships centres around practical solutions i.e. not just what everyone else is doing. Especially if ‘everyone else’ isn’t autistic.

Note: Wishing your partner was different will not only make you miserable, it won’t change anything.

Embrace the unconventional approaches that allow you both to still meet your needs.

For example, if you struggle with communication – try putting it in writing to one another via email.

Schedule intimacy in your calendar if you need. Sleep in separate rooms, houses or even countries if that’s going to be the best thing for your relationship and works for YOU.

Tune into what you want and need and then explore different ways of making things work.

6. Stop comparing yours to neurotypical relationships

Despite what you see on social media, no one has the perfect relationship. Comparing yours to anyone’s partnership but especially neurotypical people, just isn’t going to be helpful. 

If you find you’re needing validation and support – search for an online or in-person support group (or send me an email!) for neurodivergent partners to chat to others in a similar boat to you.

Tip: Personally, I found a lot of the Facebook groups online to be full of posts with frustration and negativity.

As important as it is to have a place to vent, they became pretty depressing at times and not all that helpful. Conduct a vibe check when you join any support group to make sure it’s for you. 

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