This is a guest post from Sarah J about coping with her partner’s late diagnosis. All sounds very familiar!
The past few months have been a learning curve. Highs and lows coming to terms with my partner’s diagnosis of Aspergers. I couldn’t see it at first. He was 48. How could he have got though life, holding down jobs and relationships without the condition being diagnosed? It seemed too far-fetched, but I went with him through the diagnostic process and it was like a glaze being removed before my eyes. I saw idosyncracies in a different light.
Previous arguments about how to stack the dishwasher, where coats should be hung, not to mix veg or leave shoes behind a door… took on a new meaning. He wasn’t just being ridiculously particular and demanding. It distressed him if things were done in an unexpected way. And it wasn’t that he felt his way was better – he truly couldn’t conceive that anyone would do things differently.
I make a conscious effort now to keep things the way he likes. It’s not that I didn’t before, but I didn’t always understand why, so it didn’t seem that important. I’d try to remember but often forget and revert to doing things whichever way seemed natural to me. And to be honest if he had upset me I would think ‘screw you – who says my shampoo should be on the shelf rather than the side of the bath. Why do I get no say in this?’
Give and take. I guess that’s one of the key differences with Autism. It can feel so one sided supporting someone with ASC (Autistic Spectrum Condition is the preferred term). You have to make all the adjustments. And it can be hard to get your head around a different mindset. The main sticking point for us has been accepting that life is shit. People let you down. It’s not right, but that’s just how it is. The world is so black and white for Ric that he can’t accept wrongdoing and let go. Forgetting isn’t an option. He can’t reconcile himself to the fact that people have acted immorally or betrayed him. It cuts too deep to be put to the back of his mind. It’s like a computer programme malfunctioning. The error message keeps popping up until you fix the bug.
Trouble is, society doesn’t work like that. We don’t fix the bugs. We all accept wrong-doing on a daily basis. We turn a blind eye, don’t speak up, walk on, as we don’t want to put ourselves out or get drawn into other people’s issues. It’s not worth the hassle. We choose our battles carefully. What a luxury to choose! Autistic people don’t have that choice. They’re programmed to point out what’s wrong and speak the truth. Ironically they think people will thank them for it, but just end up on the receiving end of of people’s wrath.
I think what saddens me most about the condition is how Autistic people can be misunderstood and perceived to be unreasonable. Ric is incredibly articulate and capable so others think he’s like them and make no accommodation for his difference. This has caused issues in particular when he’s fighting injustice. A point is usually reached where most neurotypicals switch off. You’re resolved to the fact that you’ve done all you can and it’s not worth fighting things anymore. Justice may not have been served, but a process was followed and as time goes on you can get over how let down you feel. Ric would love to be able to switch off like this but he can’t accept wrong-doing in the way we all can. Others think he’s just being unreasonable but it’s not that he’s unwilling to come to terms with things. He can’t. And that distresses him far more than inconveniences us.
It’s a cruel twist of fate that those with ASC who are compelled to point out wrong-doing are also less well equipped to stand up for themselves and fight injustice. They have major problems with language and communication. They struggle to express themselves, to read other people’s body language and gestures for clues, and find it hard to empathise. This makes it difficult to understand what the other person is thinking, to build rapport and make a persusive argument.
I remember Ric recounting a tale of the dentist asking how we was on a routine visit. Ric’s response had been that he’d just been made redundant and his Dad had died. Naturally the dentist had a shocked expression – he hadn’t wanted an honest response. I laughed and asked why he’d not softened the blow if he felt compelled to tell the truth. You could have said “Not great to be honest. I’ve just been made redundant and my Dad has died, but things will get better.” A penny dropped. This was what the adult autism team had meant when they’d talked about social convention. For all his years and experience, Ric had still not learned how to say things in a way that accommodated the needs of the other. Something the rest of us do intuitively.
We (neurotypicals) don’t deal well when people don’t follow social conventions. We think they’re being annoying, unfair, unreasonable, barbed, pointed… Instead of listening to the validity of what’s said, we discount it because of the manner and tone in which it has been expressed. I see Ric thwarted by this all the time. I understand why people switch off to him and how they justify this amongst themselves because of his manner. I also see the pain and anguish he goes through because nobody will listen, and his sheer frustration as the points he makes are so important.
Austistic people are marginalised by their lack of social understanding and our failure to accept and accomodate difference. They find it hard enough to express themselves in the first place, but when they do we refuse to listen. Their expressions don’t match our conventions. There are no social norms. Inconvenient truths aren’t softened by an understanding precursor, providing wiggle room to help us respond. Facts are stated plainly. Stark and irrefutable. Confronting us with difficult questions and exposing realities we’d rather conceal.
The world is not accepting of difference. Nonconformity challenges and scares us so we seek to quieten lone voices. With Ric I see how the world hurts him. He wants to escape people: either live a seculed life far away from others or an anoymous one in a busy crowd. Again today people have let him down and I don’t know what to say to make it better. It’s no good telling him that sadly that’s the way the world is. It cuts no ice. I wish I had a brighter future to promise but all I can offer is my love and acceptance.