She didn’t know she’d married a man on the autism spectrum. Neither did her hubby

She didn’t know she’d married a man on the autism spectrum. Neither did her hubby

What happens when your soulmate does not communicate his feelings, understand social cues or play up the romance — because he has a disability? Finding out about Asperger’s syndrome was the first step in saving this couple’s marriage.

Autism and marriage main
(File photo: Unsplash/Alex Iby)

SINGAPORE: Ten years into her marriage, Amy* began to wonder: “Did I sign up for the wrong thing?”

Jake* (not their real names) was not putting effort into the relationship. He still refused to call her parents “mum” and “dad” (a Chinese tradition) or speak more than two sentences to them. He was adamant about staying out of her social gatherings too.

It was as if he did not want to be a part of her life. There was this nagging feeling that Jake was indifferent, even rude. “I just couldn’t put my finger on it,” says Amy. “I felt he was just being so difficult … I felt very lonely.”

Jake, however, felt he was anything but indifferent. He was logical.

But there never seemed a right explanation for why he was more comfortable waiting in the car than joining Amy with her friends; why it was nonsense to call someone who was not related by blood “mum” or “dad”; why his loyalty to her was enough for the relationship.

The couple were heading for divorce.

Then Jake read the book, Look Me In The Eye: My Life With Asperger’s. He cried alone in the car while he was at it. At 37 years old, his life finally made sense. But this was difficult to accept when approaching middle age.

“I started blaming myself because of my condition. It'd caused a misunderstanding; it'd affected our relationship,” he says. Two years later, he still cries when talking about it. “I realised I’ve struggled so much with my life because of this.”

In layman’s terms, Asperger’s syndrome is a milder and less disabling form of autism, characterised by social awkwardness, a poor understanding of social cues and displaying few emotions. People with Asperger’s may have high intelligence and above average verbal skills.

Since 2013, it is no longer classified as a diagnosis of its own but a part of autism spectrum disorder (ASD).

For Amy, she could look back on her relationship and realise how Asperger’s explained many things, even the little things. She could finally know, and accept, her husband for who he truly was.

High-functioning autism and marriage 1
(File photo: Unsplash/Shoeib Abolhassani)

THE FIRST DATE, AND MIXED SIGNALS

Jake was the kind of guy you would have noticed from across the room. Not because he was exceptionally good-looking or charming, but because he always had his head down.

“I found this guy very strange, very shy,” recalls Amy, who worked in the same company, but different department, as him.

READ PART 1 OF A SERIES ON ADULTS WITH AUTISM: The invisible struggle of people with high-functioning autism — and workplaces that hire them

They often crossed paths, but he always averted his gaze, so she seldom thought about him — until a mutual friend set them up. “My colleague got me to approach her,” says Jake, who was not actually shy.

On their first date, they bonded over their love of food, travelling and films, and she had a good feeling.

But after that date, it was as if he “didn’t know how to carry on to the next one”. They chatted through texts, but nothing seemed to be moving forward.

“I thought if he were interested in me, he’d show more interest. He was giving mixed signals. He was keeping a distance,” says Amy. “But I was hooked already.”

Unable to “tahan” (bear it) any more, she decided not to wait for him to make up his mind. She showed up at his place, heart in hand. “He was so happy,” she says.

I just became the proactive one, like I was the man, and he was the woman. He was the only guy who could make me do this.

But the rest was not yet history.

One incident has puzzled them until today. As a sweet gesture, Amy bought Jake breakfast, driving at least 20 minutes from her home in the west to him in the east. She bought two sets just in case, since she still had not figured out what he liked to eat.

“I threw the breakfast in the dustbin,” he says.

He had misunderstood her intentions and thought she was giving him breakfast because she had an extra set, as if he was an afterthought. “I didn’t want to accept this kind of thing,” he says.

But because she was less sensitive than him, she says, it turned out fine. “I rarely get angry. I’m a very non-judgemental person,” she adds. “If you don’t want it, it’s okay. You throw lah … What can I do, right?

“I found it peculiar. But I saw that he was very upset, so I probed and found out that I have to be very careful and communicate a lot with him to make sure that he knows what I’m trying to convey.”

Jake was also a little awkward and kind of random.

“There was once we were on the train, on the way to a good meal. Then suddenly, with no small talk at all, he blurted out: ‘I earn less than you,’” Amy recalls. “I looked at him and wondered, ‘Er, why are you telling me this?’”

When they were around friends, he took a long time to warm up. Even when he did, “sometimes the conversation would’ve ended already, but suddenly, he’d add something, and nobody would laugh or respond”.

But she never wondered if there was anything wrong with him. “Maybe I’m also wired differently,” she quips.

After eight months of dating, Jake felt ready and “put on all (his) courage”. One evening when Amy was at a restaurant with friends, a rabbit mascot turned up at the window, ring in hand.

“I just thought this was the thing I needed to do … to get her to marry me,” he says.

It was completely out of character for him given his social anxiety, she acknowledges. “I think he nearly wanted to faint already. Everybody was looking at him!”

But what made him sure she was the one when it had been less than a year? “I did all my evaluation already,” he replies. “Everything about her was just right to be my wife, my partner.

“I don’t have to struggle to find something to talk to her about. She’s very interesting, she brightened up my life.

“I’m a very boring person, but she’s like sunshine.”

Of course, she said yes.

High-functioning autism and marriage 2
(File photo: Unsplash/The HK Photo Company)

LIFE AFTER MARRIAGE

One of the telltale signs that one’s relationship difficulties might be due to Asperger’s syndrome, reads an article by Australia-based therapy provider The Hart Centre, is if the “relationship had a passionate start, but the passion dwindled quite quickly when you started to live together”. (It listed 55 signs.)

It was so for Amy and Jake, and it began with the little things.

Every Chinese New Year was a nightmare for the couple, and not just because they had to fend off nosy relatives. Jake refused to see his in-laws as anything more than an “auntie” and “uncle”, which made the custom of “bai nian”, or exchanging festive greetings, awkward.

“It’s just calling them (mum and dad). You won’t die, right?” Amy says. “But he just couldn’t do it. We’d quarrel over it and arrive at my parents’ place in a very bad mood.

“I just felt he was so rude.”

To this day, he stands by “auntie” and “uncle”. When he goes to their place, he “(sits) there on the sofa quietly and does (his) own thing”.

When it came to her friends, she had hoped he would be more involved in things like attending a baby shower or a birthday party where she wanted a supportive plus one. But he would drive her there, “park the car at the car park and refuse to come out”.

“He’d say, ‘I’ll wait for you in the car. Can you not force me to go?’” she recalls. “I mean, it was just fun, nothing so serious … Why did he make a mountain out of a molehill?”

He had “zero friends”, she adds, which was shocking news when they first started dating.

“It’s not that I don’t need friends. I only need one friend,” he says. “My mother was my best friend. But after my parents divorced, I needed a new best friend.”

Her role was replaced by one pupil in primary school and then another in secondary school. “After secondary school, all I needed was a girlfriend,” says Jake.

After I met Amy, she became my wife, my best friend, my companion, my everything.

Romantic as that may sound, she wanted him “to be involved” in her life. “I have friends, I have family. This is part of our lives,” she says. “I felt very sad. Why was I doing all these things alone, yet he was just happy where he was?”

Resentment accumulated, the emotional distance between the couple widened, and around the turn of the decade, divorce was on the table.

High-functioning autism and marriage 3
(File photo: Unsplash/Zoriana Stakhniv)

“That was when we started to look into ourselves and realised the root of the issue,” Amy says. They discovered Asperger’s syndrome and felt that it was “almost 100 per cent identical” to what they were facing. She felt ignored, and Jake was unable to perceive her feelings all along.

Had he known what she wanted, he would have done “everything” he could, he says. “I’ll do 120 per cent to make her happy.”

Since then, he has been practising demonstrating his feelings, with her help. “We take the guesswork out of the relationship,” she says. “He’d also explicitly tell me the things he doesn’t like.”

She has realised his world is siloed. For lack of a better comparison, he is “like a dog”, she says. “He’s very loyal, and his world is all about me, whereas as a neurotypical person, my world is a lot more.”

She can now shake off the feeling that she must answer to her parents or friends for her husband’s quirks. “I don’t have an explanation for it, right? He thinks if they’re not his parents, there’s no reason to call them that,” she says.

“At the end of the day, parents just want to see their daughter or son, not so much their son- or daughter-in-law.”

And her parents, after 10 years, “know he’s weird lah”. She adds: “I married him not because of my parents (but) because I like him. I enjoy spending time with him, so I don’t really care what my parents think.”

The same applies to her friends. “With or without him, we still can enjoy ourselves,” she says. “I actually don’t need him there, (otherwise) I may be happy, but he’d be struggling on the inside. I’d be making him suffer.”

In this vein, she says that “more than support, (people like Jake) need understanding”.

WHAT TO DO IF YOUR PARTNER IS ON THE SPECTRUM

Psychologist Jocelyn Chua, who helps autistic individuals with mental health issues like depression and anxiety, says individuals with lower support needs — who belong to the higher-functioning end of autism spectrum disorder (ASD) — often find themselves misunderstood.

READ: There is rarely a right time to talk about your mental health when you’re dating — but do it anyway

“One of the key deficits they have is social communication. So when you aren’t able to intuitively understand how to relate to others, when everything requires rehearsal and planning, it’s very effortful for you to be in the company of people,” she says.

“Because their appearance is like (that of) a neurotypical person, you can’t tell they have such difficulties. So a lot of times we might jump to the conclusion that this person was being rude.

“And because of that, it’d lead to misunderstandings and then … fractures in relationships, which eventually would lead to a sense of loneliness.”

She also cautions against assuming anyone who appears to be “quirky” or “weird” is autistic. “I refrain, as far as possible, from using these terms,” she says.

“My angle is really about understanding what your strengths are. What are the difficulties you’re currently faced with? What are some skills that you lack and perhaps need to develop? Or is it about a perspective that may not be balanced, that’s contributing to certain struggles?”

READ: When we call people with strange behaviour mentally ill, we reinforce mental health stigma — a commentary

Symptoms of ASD typically appear from childhood, but they could also be related to social anxiety rather than ASD. “So it’s not just one episode. It’s a continuation throughout your life. Some might also have active functioning difficulties, meaning they have difficulties in organising,” she adds.

“When we use a label, chances are we have a certain stereotype in mind. We might forget that the individual is first a unique person, and the diagnosis is just something in addition to the person.”

For her part, Amy discovered that her husband’s disability did not change the fact that they loved each other. “All this miscommunication wasn’t because he didn’t love me,” she says. “We felt there was still love. We still wanted to work on the relationship.”

High-functioning autism and marriage 4
(File photo: Unsplash/Etienne Boulanger)

His brutal honesty makes her feel that she can be a better person. “It’s not very nice to listen to, but that’s how it is. At the least, when you hear the truth it helps to take you on a path of improvement,” she says.

And being his whole world need not be a bad thing as she sees it. “He’s very loyal to people he puts his trust in — I think that’s a very, very, very rare thing in the world.”

What they enjoy most of all is each other’s company. “We have a lot of deep conversations about movies,” cites Amy. “We cook together, we spend time together.”

Jake can be affectionate, too, if she reminds him. In the past, she would get angry and hurt as he did not use to like being touched, especially when he was doing things. “But I get it now — it’s just a pet peeve,” she says.

"We know our threshold now, and when we notice we’re hitting it, we won’t go further.”

What about physical intimacy, like sex, which hinges on subtle cues for some? “Just last night,” Jake says, apparently unperturbed, to which Amy responds: “Don’t need to be so specific! That’s Asperger’s syndrome, yah? He can never lie.”

She adds: “I believe physical intimacy is still very important in a relationship … Sometimes you don’t even need language. (Touch) gives assurance to each other.”

EMBRACING ASPERGER’S

Learning about Asperger’s syndrome was one thing; accepting it was another, including on Jake’s part. But when he did, it helped him to “face the world” knowing what he can and cannot do. He has become “a much happier person” since then.

“You’d know that you’re not doing things because you’re a bad person,” he says.

Sensitive to sound, wind and lights, he also used to be affected by the names he had been called: Loner. Weirdo. Alien. But that part “doesn’t matter” to him any more.

READ PART 2 OF A SERIES ON ADULTS WITH AUTISM — ‘I felt like an alien abandoned in this world’: An autistic man’s quest to be ‘human’

To other people dealing with relationship difficulties due to Asperger’s syndrome (suspected or confirmed), he says: “You first have to understand yourself, your shortcomings and your own challenges, and then understand your behaviour.

“Then start making changes to adapt to this world, especially to your partner or your potential partner. You have to understand your partner’s needs, and then make sure to communicate very well that you have Asperger’s syndrome.

“This is a world of neurotypical people, so they don’t have to do anything. The person with Asperger’s syndrome would need to do more because this isn’t a world for them.”

Amy feels that neurotypical people, however, can and should step up — and that disability is not the determining factor in a relationship.

High-functioning autism and marriage 5
(Photo: Christy Yip)

“There must be love. If there’s no love, everything can fall (apart) for a reason,” she says. “I put myself in his shoes and realised nobody wants to be the odd one out.

“After knowing he has this condition, I know he’s not doing things on purpose. I can live with it.”

To others like her, she says: “Don’t close up just because somebody is different.

“Look at what the person has rather than what he doesn’t have. If that’s something you value, then you can work on this relationship.

“(People on the spectrum) might look boring on the surface, but their world is so rich … Don’t (sell) yourself short. Have an open heart.

“The rest is just noise.”

This is part of a series on adults with autism navigating the neurotypical world of work, marriage and identity.

Source: CNA/dp

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