This Love & Autism story was written for us by a speaker at last year’s conference, Chou Chou Scantlin. You can read her original post on her blog (along with many other great stories!) here. 

Whoa. What just happened? How did it come to this? I have been valiant, loving, kind, focused, relentlessly hard working, and making great choices, for the right reasons. I have tended to the needs of my husband and he to mine. I have lived in a full-hearted bliss that comes from loving unselfishly and building a life with a man I adore, supporting his hopes and dreams. And yet, once again, there is a stranger in my bed. That stranger is my husband.

I am autistic. My husband of 25 years is not. We are both eccentric creatives. He loves me deeply. I love him beyond words. And there are times he is a stranger.

A while ago, we had a major and super-gross plumbing failure happen in the basement of our little home. Enormously expensive to have a professional fix. Since we are both handy and proficient DIYers, it made sense for us to brave through this ourselves. However, this project was really, really disgusting and my husband’s instinct was to lock the door, get a hotel room, and maybe sell the house. My reaction was to see it as an opportunity to finally improve our home’s 1920s entire plumbing and septic system with an environmentally sound design, adding value to our home with worry-free water and waste management system. State of the art and affordable, because I had foreseen this problem and had already consulted experts, read much, and purchased major components years ago. My husband, however, refused to agree to the plan back then, since nothing was broken. Now it was, so I was thrilled that my set aside plans had a chance of finally actually happening! Was that not the best option? Had I not been loving and kind, putting my husband’s plumbing preferences first for all those years? Was there a single valid reason to not implement my plan now?

Being a loving and kind husband, he agreed to the plan and offered help. After all, he had no strong opinions about plumbing, besides that it work. Being a loving and kind wife, I protected him as much as I could from the clean up and remediation, as well as took on the vast majority of the work. His contribution would be to cut and connect the long spans of pipework that required two people. I would take care of the rest.

The next months, from late winter until early summer, were spent with me spending every possible bit of time and energy on this project while my husband kept the business for our big band going. It was all coming together beautifully. Except when performing, I put aside my usual lipstick and pinup blonde look for the practicalities of crawling in spidery spaces and stinky mud. There was that moment when my new pickaxe was delivered, and I danced a little jig, because it was going to make my job SO much easier. That was the moment the absurdity of my reality kicked in. I was a big band chanteuse who crawled on pianos for a living. I was 115 lbs of autistic gumption, doing major plumbing of my own state of the art design, mostly on my own, and dancing in the driveway with a pickaxe, wearing my husband’s hand-me-downs. I was on the roof, armed with a large power hole saw, adding a new vent stack, deliriously happy and proud.

I am autistic. I am exceptionally good at thinking out of the box. I engage with projects with intense focus. This is not a bad thing. It can get things done. In fact, it is pretty fabulous. As long as you keep out of my way.

I am not a “team player”. I am loving and kind, but am an extremely singular worker. I form a monogamous relationship not unlike love with a project. It is mine. I am its. We are in love.

My husband understands, but not really. If I have to changed it or have it taken away I will mourn the loss of a loved one. I need time to grieve before I can move on. It is a very deep and personal loss. And it is real. it is not distortion, disfunction, or illusion. It is valid and real. It is an emotional connection he does not have. I respect that and adapt. When you are different, you have to adapt all the time. And I love him. But to me, he suffers from a deficit of emotional connection to projects. Except his lack if engagement is the norm. Mine is the one that is different. So that rich, beautiful engagement I experience is seen as a deficit. Really, it is not seen at all, until my husband decides to we must change a plan that includes my project and it feels like he has shot my lover. He sees it as a trivial change. To me, he is murdering my love.

What is love?

A mix of pleasures and emotional connection wrapped in trust. I trust my project. It is planned out visually, rehearsed in my mind, over and over in detail, before putting into action. It is orderly and beautiful. I can count on it. I trust it. And it gives me unspeakable pleasure. Love is blind. I see only beauty in my project. Sure, some moments may be unpleasant, but it doesn’t matter. It is an unconditional love. The order is beauty in a world of chaos. A world that assaults my wide open senses. Those wide open senses that can think out of the box, think creatively, logically, orderly, takes in so much sensory information, it can feel like I am falling off a cliff. But a plan, a project, is a map of a safe road, gives me a focus that gloriously keeps a world of too much at bay. My immersion in a project keeps me from falling off that dangerous cliff of confusion and overload. It is my Prince Charming, carrying me off to a well-planned castle. How could I not adore it or deeply suffer at its loss?

How does one love someone who needs plans and projects in order to survive? How does one build a life with someone when seemingly trivial changes in plans make a loved one fall off a cliff? You catch them. You offer a new map. Above all, you keep them safe while they mourn. You trust they can adapt and create a new map. Respect how upsetting the loss can be. The risks of that cliff is frightening. You might find other things frightening, like using power tools on a steep roof. That’s okay.

It took a long time for us to figure this out. We were both so frustrated by how differently we saw thing, as I tumbled off yet another cliff to make room for my husband’s preferences. His unpredictable whims that brought such harm made me not trust him. I was not safe.

I do not have to always get my way. What I do need is a map. Give me a problem to solve and get out of my way. Once I am engaged, respect how deep my relationship with that project is. It is my map that keeps me from that awful cliff, and it feels glorious. I am having a love affair. Don’t expect me to give it up or change it without offering another option and respecting how hard the change is. It may be trivial for my husband. It is intensly important to me. I fear falling off that cliff. It is a horrifying experience.

This deep engagement does not apply to most things I do. I have lots of casual project relationships and take great joy in accomodating my husband’s desires. It is only ones I have a deeper bond with that are hard to have changed.

Somehow, we figured it out, at least most of the time. Considering how clueless we are at what each other is really experiencing, we have created some sort of understanding. I want him happy. He wants me happy. Even if he sees my intensity as weird. Even if I see his lack of it as weird. He knows it is best to add his ideas in the planning phase. Once I am out of the gate, it is much harder to stop me. If he needs to stop me once I get going it is best to offer valid reasons and allow me plenty of time to create a new plan that includes his preferences. The change must be logical and not just a trivial preference. It is not worth hurting me deeply for a whim. No matter how the change is done, it is going to hurt. His priority needs to be to keep me safe through the sad confusion I feel at the loss, and know I will eventually find my way and be happy again. The very worst thing for him to do is push back or accuse me of not seeing his side of things. I get that he has a right to his opinions, but I am in great distress. His priority must be helping me through it as easily as possible. And knowing I am safe in a world that hurts is everything. It means I can trust him. I may be angry as all heck at him for making this change. But his understanding this means I can trust him.

How do you love?

Unselfishly, above all. You love who they really are, not who you expect them to be. How do I love? Autistically. I do not expect my husband to live by my maps. I cannot live without them. We trust and keep each other happy and safe by working with how we are different. Very different. Do we get it wrong a lot? You bet. As long as we try, it’s okay. Love is a mix of pleasures and emotional connections wrapped in trust. The rest takes practice and a million mistakes. And there are always projects.

What I am trying to say is this: There is a lot of negative information online about how autistic people cannot make good partners. I am here to say that the mix of pleasures and rich emotional connection I have with my husband is real. In many ways, we are a perfect match. We have had a heck of a ride together with more happiness than most, and it looks like there will be more. It is not always easy and we get it wrong sometimes. Just like all other couples. He is a boatload of work and so am I. But I am autistic, so we created a few extra different rules of engagement and take them seriously, with the priority being to keep me safe in a world that is overwhelming. And we learn more all the time. Happily ever after is not a real thing. Happy in the struggle is true love. Rich, complicated, horrifyingly messy, and gorgeously sublime. Bring it on. Love is a mix of pleasures and emotional connections wrapped in trust. And, in our case, with passionate projects and sometimes strange bedfellows of 25 years.

Also, a warning. I give free tours of my home’s plumbing to all visitors. It turned out swell. Just as planned.