A ring-tailed lemur (R) looks at a fennec fox at Sunshine International Aquarium in Tokyo October 1, 2006. REUTERS/Yuriko Nakao (JAPAN)
I’m a lemur and my partner is a fox, so this photo is totally relevant. Photo credit: REUTERS/Yuriko Nakao (JAPAN)

The other day I saw that PBS is promoting a documentary (not aired yet) called ‘Autism in Love’, which centers around four autistic adults talking about their experiences with dating and relationships.

As a neurotypical person in a long-term relationship with an autistic partner,  I’m cautiously intrigued. I would love to see this topic thoughtfully broached more often, especially since so many people seem to have a very limited exposure to positive representations of autistic adults.

But I’m also a bit uncomfortable with the idea of this documentary. The fact that it seems to be based around the voices of autistic people is encouraging, though I’m not totally thrilled by the description on the documentary’s website, and it is not apparent whether anyone on the filmmaking staff is autistic. (I guess I’ll see!)

There is huge expectation that autistic people should adapt to make neurotypical people comfortable (ie: by hiding certain behaviors). I would hate to see a documentary that is an exposé of ‘quirks’ rather than a really thoughtful examination of what autistic people go through in their relationships with neurotypicals and other autistics.

My partner and I have been together for just about five and a half years now, and just as in any long-term relationship, we’ve both learned a lot about each other and about communication.

I’ve also learned a lot more about autism than I knew before, partly because I decided to look into more resources curated by autistic people. I highly recommend The Thinking Person’s Guide to Autism and The Autistic Self Advocacy Network. I’ve learned a lot by following them on Facebook. (Autism Speaks is not a great resource. More on that later.)

I’m not an autistic person, and I definitely think that we should be focusing on their voices. But if I were to be in such a documentary, here’s what I’d want to say about what I’ve learned from being in love with an autistic person.

Absolutely please, please please tell me if I say something that is off. I would want to learn and do better. Also fyi, my partner has read this post and is cool with me sharing it. 

1) High-functioning/low-functioning labels are useless (and actually harmful)

When I first met my partner and learned that he is autistic, I thought I should use the label “high-functioning” because I couldn’t tell from a regular conversation with him that he was not neurotypical like me.

I didn’t know any better and even described him this way to another autistic person. Yikes!

At the time, my partner also wasn’t really questioning the labeling system. But when I started reading online articles to learn more, I found this:

“A so-called ‘low-functioning’ person is capable of so much more than we give them credit for, and a ‘high-functioning’ person is often struggling against so much more than we can see.”

I’m not sure who to credit for those words (I’ve been seeing them all over), but they explain it well. And if you are autistic/close to someone with autism, it becomes clear that this is so, so true.

We don’t use high-functioning and low-functioning to describe to categorize our neurotypical friends, regardless of how much they struggle in their daily lives. (At least, I really hope you don’t.) Saying high/low-functioning does not actually do anything to describe a person’s abilities in a useful way, and it’s really condescending. So please just ditch it.

2) A lot of autism is about sensory processing.

For a neurotypical person, sensations can usually fade into the background while we focus on the task at hand. For autistic people, sensations can be very “loud”, to the point that they are distracting or even overwhelmingly painful.

This is why my partner is *much* more sensitive to heat, humidity and bright light than I am. A day at the beach might be an ideal day out for me, but it’s usually an awful experience for him.

I had no idea about this dimension of autism; it’s not in the popular narrative of doom and despair. (Being an introvert, I’d be really interested to learn if there is some intersection in the experience of highly sensitive people (HSP) and with the sensory-overwhelm element of being an introvert.)

Autistic people who stim (fall into a pattern of repetitive body motions) are doing so to drown out overwhelming stimuli. Telling autistic people not to stim is just cruel: it’s saying that our desire to see “normal” behaviors that make us comfortable is more important than the coping mechanisms of someone whose body is hurting.

(I think I might be guilty of this. I sometimes ask my partner to stop tapping on nearby objects or on me because I’m sensitive to the sound or feeling. I didn’t think of it as a kind of stimming until recently. So many people tap! This is a bit of a gray area–whose needs come first? But we talk about it when we need to.)

3) People with autism absolutely do NOT lack empathy.

No no no no.

There is a world of difference between having difficulty interpreting neurotypical social cues and being able to care deeply about another person’s feelings.

My partner is not lacking empathy. He is one of the most caring and empathetic people I know, which is why I turn to him for support.

Plenty of autistic people are telling us that they don’t feel too little–rather, they feel and empathize too much. This seems to be a good explanation (minus the use of functioning labels in the first sentence).  

4) “Nothing about us without us”

Autistic people–even nonverbal people who haven’t yet been encouraged to use a communication system that works for them– are capable of advocating for themselves, and neurotypicals should listen to and amplify their messages.

Autism Speaks completely erases the voices of autistic people in saying that they need neurotypicals to advocate for them. No one in leadership at Austism Speaks is autistic, and the very name implies that they are giving a voice to the voiceless–when it is neurotypical groups (like them) who have taken that voice away.

Yes, some families do receive support from the organization, and I don’t really want to argue with those people who have felt supported by them. But to many autistic people (and I agree), the organization’s narrative causes great damage. The language revolves around tragedy: autistic children as a burden, autistic children as a tragedy, autistic children in need a cure.  The focus is often on how hard it is for the family, and not on how hard it is to be constantly told that your existence is a burden. (A similar narrative exists around queer youth in families that do not support their identity.)

Autistic people don’t want to be cured or eliminated. They want acceptance, accessible support, respect, and some flexibility from neurotypicals. We can work on that.

5) When my relationship is tricky, it’s not because my partner is autistic.

It’s because we’re different people. And I think that in most relationships, the people involved are actually separate human beings with different brains. So yeah.

There are certain things I can do on my end to help things run more smoothly. I can do my best to communicate clearly and honestly.

This means:

I can make it known (calmly) when I’m not understanding my partner’s reactions.

I can keep in mind that occasionally his tone and his words don’t add up for me, and ask for clarification.

I can tell him when something he’s doing isn’t working for me.

I can keep his physical comfort in mind when planning activities.

And I can remind myself when I am frustrated that we both struggle in different areas of our lives.

But hey–doesn’t that just sound like a normal relationship?

I think that’s because it is.