Love. Revere. Discover. Connect.

March 12, 2017: “Strategies for Life: Neurodiversity and Touch Consent”

Sermon (Rev. Denis)

When I first read the Journal of Best Practices, I recognized in David Finch’s description of himself some of the people I’ve had in my life, people I’ve loved and respected. In fact, as I read the book, the four years I spent living with three other adult men in a big shared house in the center of San Francisco started to make sense.

At the time, I found two of them confounding. It felt like we were always misunderstanding each other, and what was particularly confounding was the fact that they seemed to hardly even notice each other, despite living in the same house and even working in the same small company. There was no animosity, just…..I don’t know. They didn’t connect somehow.

One of them was a brilliant biophysicist who seemed constitutionally incapable of looking me in the eye when he spoke to me … or anyone else.

He’d call me at work to ask me a question about the furnace or the ice cream I’d bought the night before, and I have to yell at him, SCREAM at him to hold on, while I took another call. He was on a roll, not listening, so I’d just put him on hold so I could tend to business. I’d return, and he’d still be talking, oblivious to the fact that I’d ever gone anywhere. When he paused for a breath, I’d tell him what I had done, and he was nonplussed. He just said, “Oh, I hadn’t noticed,” and continued on as if I’d caught every word. And this happened all the time.

Then there was my partner, Seph. In the 18 years we were together, we never quite got each other. Don’t get me wrong. We loved each other. We still love each other. We still have the same last name, and will always consider one another family, but we always just missed each other. While I have always been a big-picture kind of guy, good at spatial relationships and group dynamics, he was the master of the vignette, the smallest details.

Whenever we moved, I’d unpack, wash and put away 26 boxes of kitchen equipment while he lovingly arranged on a shelf 14 objects that had never before been grouped together. And he did it in a way that made any observer sigh with longing over the artistry of the composition. Our home was always full of such micro scenes, which he adored and wanted acknowledgment for. Most nights when I got home after him, he’d meet me at the door and ask excitedly, “did you see what I did?”

While I really did love Seph and our housemate, it confused the heck out of me to live with them. They were a lot like David Finch in that I could ask them ten times a day to close the pantry door so the cat wouldn’t get in, and they’d never do it. But a complete stranger could ask them to do anything….Anything!…and they would always comply, no matter how complex or time-consuming the request.

Coming to the realization that they may have had Asperger’s helped me understand them a bit more.

It gave me more compassion. It helped me to see that they were just different from me. Not bad. Not wrong, or sick or broken. Just different from me and different from each other, and they had about as much chance of changing as I did.

I should probably note here that since the publication of The Journal of Best Practices, clinicians have stopped using the diagnosis of Asperger Syndrome as something separate, and instead just talk about the autism spectrum, knowing that there are no fixed points on the spectrum. Each individual is so different, that trying to pin any set of behaviors to one point is counterproductive.

Living with the two of them was my first experience in understanding neurodiversity.

By neurodiversity I mean the range of differences in individual brain function and behavioral traits, regarded as part of normal variation in the humans.

The term is probably most often used in the context of describing people on the autism spectrum, but it can also refer to differences in our emotional or intellectual abilities or even the psychiatric conditions we live with, especially a tendency to depression or conditioned responses to traumatic events in our past. PTSD.

The term neurodiversity is an inclusive linguistic term acknowledging that our brain function is as varied as the physical characteristics of our bodies.

The thing that was most interesting about reading Finch’s story was the list of 150 questions that his wife read to him. The more he answered yes to, the more likely it was that he was on the spectrum. He answered yes to 122 of them, and though he didn’t share all of the questions, of the ones he did share, there were quite a few that I could answer yes to:

Do you take an interest in, and remember, details that others do not seem to notice?

Yes. Like that the fact that my mother and my sister in law were exactly the same age, to. The . day., exactly twenty years apart, when their older brothers died.

Do you notice patterns in things all the time?

Of course, I noticed that every single mom of young children that I talked to here in my first year expressed a similar need for group reflection on parenting.

Do you get very tired after socializing and need to regenerate alone? 
You should see me on Sunday afternoon when I get home. I just want to hide. It’s not that I don’t love everyone hear, and relish my time time with you, it’s just that I get this indescribable anxiety about losing ability to hear the voice still and small inside of me. I need quite time to find myself again.

But saying yes to some of the questions doesn’t mean I am on the autism spectrum.

We all can look at diagnostic descriptions of psychiatric and medical conditions and see a bit of ourselves in there. It’s a common occurrence for psych students – and med students – to diagnose themselves with just about every condition they read about.

The thing is that we all have slightly different assortments of characteristics. A soupcon of autism with a tiny smidge of narcissism or a dusting of bi-polar.

Most of us can work with what we’ve got, covering it all up in the interest of looking vaguely “normal,” whatever that means. But some of us can’t. The characteristics are too strong.

We may be able to just “get over it.” But there are some who can’t. My biophysicist housemate and his psychologist husband referred to the differences as hardwiring.

David Finch’s experience is not unique. But neither is it representative of everyone on the autism spectrum.

And our knowledge about that whole spectrum is so ever-evolving that Asperger syndrome isn’t even used as a diagnostic term any more.

I thought about asking people to talk today about the various ways in which they are differently wired. But as I started thinking about different people in the congregation, I realized …. everybody is differently wired in some way. Near/far sighted.

 Introverts/extroverts. Skeptics/optimists. The chronically cranky and the persistently positive. Some babies come out of the womb cheerful and curious, while others come out inconsolably aloof.

Some are compliant, willing to do whatever they are told without question. They appreciate the direction of a clear leader because they can’t seem to remember repeated too-subtle requests to be “considerate.” Others are more defiant, trusting in their own awareness of the needs of others, sometimes to their own detriment.

They might react to conflict out of a sense of guilt as they bristle at being bossed around.

And all of us change constantly. Our experiences change us, and aging changes us and our wiring.

I got to spend time with Margie Rittenhouse on Thursday. She had a stroke a few years back. It left her less physically mobile with impaired peripheral vision and unable to access words the way she had her whole life, so she doesn’t feel confident sharing her story herself up here, so she said it would be okay for me to do so.

For someone as charming and clever and social as Margie, it’s been enormously frustrating to her that her slow recovery may never be complete, but she’s living with and adapting to the changes in her brain function. She’s been able to use electronics, especially her smart phone and tablet, to help her. She’s gotten around using Uber, booking rides online. She’s used an app for her tablet to help her practice vocabulary words so that they’re starting to come back to her with more ease, little by little, and she’s been able to communicate electronically when speaking is difficult.

The thing I find interesting is that she, like so many young people with learning disabilities and autism have, has benefited greatly from using electronics.

There are preschoolers who can’t communicate with other people verbally or through touch, but can manage an iPad to connect to their families, teachers and the whole wide world.

Even though we have all these ways of connecting, we’re all so different.

Here in our congregation, some people crave silence and could sit in the stillness for our whole time together, while others can barely stand more than thirty seconds of quiet reflection. 
Some come alive listening to a long, well-researched and scholarly talk on a philosophical or theological fine point, while others fall dead asleep in their chairs listening to what feels like a boring old lecture. Then, when your minister tells stories, whether they’re charming personal anecdotes or universal moral tales, some are on the edges of their seats, enthralled, while others on the edges of their seats, ready to bolt out the door.

In every congregation I’ve ever served, there has been at least one person, usually a respected elder, usually a woman, who is described as “glowing,” who comes to services for one reason: she lives alone, and it’s the only time of the week when she can touch another person. There’s nothing aggressive or sexual about the touch, it’s just a hug or a gentle and long handshake, but she needs physical human contact, now that she lives alone after life of caring for children or grandchildren.

And in every single congregation I’ve served, there have also been numerous people, of all genders, who are survivors of violence. They were abused as children by their fathers or other adults that were supposed to love and protect them. They were raped by a date they trusted, or a gang of thugs who wanted to humiliate them. They fought in wars, where they were forced into situations in which they had to do things they never thought they’d be able to do.

In every congregation I’ve served there have been people who are living with chronic pain or other disabilities that that are invisible to the casual observer, but that limit their mobility or their ability

So, sadly, the person who craves touch, can unwittingly trigger the traumas of the people they care about, or inflict pain in ways that would make them feel terrible if they knew about.

The old etiquette used to be to pretend not to see little differences in people and to make a big fuss over those with obvious differences. Pretend we are all the same, and do nothing to draw attention to anything that might make the other person feel embarrassed or singled-out.

The problem with that way is it sets us up to ignore the obvious differences that may require special attention, or to minimize or even ignore their struggles.

If we don’t see each other, it’s easy to use language or set up informal rules of engagement that end up excluding each other.

So, I want to suggest a few strategies for helping people feel included while doing what you can to help.

First of all acknowledge the differences. You don’t have to make a big deal out of them by saying something like “Oh I see you are using a cane! Sit right there while I bring you what you need!”

Just take note, and ask if there is anything you can do to help.

“I’m glad you’re here today. Is there anything I can do to make your visit more enjoyable?”

Ask if you can help. When someone is significantly older or younger than you are, or using some kind of tool or appliance like a walker or white cane, don’t just assume they need your help. You should ask “May I open that door for you? Would you like me to get you a plate of food? May I pick that up for you?” And give them the chance to respond. This is the kind of situation in which the platinum rule works best: do unto others as they would have you do unto them.

Most importantly, ask when you need help. Especially here. There are so many people here willing and able to help in any situation imaginable. What we’re trying to cultivate here is a culture in which people can respond to one another’s needs lovingly and compassionately, in way that build and deepen connections. Nobody can help you if we don’t know what your needs are.

Educate yourself. If somebody uses a word or phrase like neurodiversity, touch consent, or transgender, and you have no clue what they’re talking about, look it up before making a comment. Seriously. In this age when just about everyone has a smart phone or a smart teenager near by, just look it up, or ask. And when concepts like ableism, rape culture, or developmental disabilities leave you confused, read up.

Find out what people mean when they talk about their personal experiences in these areas. In fact, you can apply this rule to anybody whose experience is different from your own: people of different races, genders, sexual orientations, religions or ethnicities.

Do your homework without assuming that the person you are talking to represents everyone like her, or that it’s her job to teach you everything there is to know about being autistic, or paralyzed. Or black or transgender.

In talking with people, just assume that they might not pick up clues that you think of as polite. Be clear. Say what you mean. Don’t assume that people will somehow get your subtle hints. If you’re talking to someone, and you need to go but they aren’t getting the hint, just say, “I’m going to go now. It was nice seeing you.” Don’t make up some polite little white lie. Don’t say “I’m going to let you go,” or “oh my, look at the time.”

It’s okay to say “I need to go now,” as soon as you need to go, instead of putting subtleties out there then getting caught up in judgment or exasperation. Just tell the other person, right from the beginning, exactly what you need.

Ask if you can touch someone, either by hugging them or taking their hand, or even helping them to sit down or stand up. You don’t want to hurt anyone unknowingly.

If someone is touching you, and you don’t like it, it’s okay to take a step back. If they are trying to help, you can say “I’m okay.” And if they’re touching you for no apparent reason, you can say “I need you to not touch me,” in a way that is as friendly as you can muster.

See what I did there? I didn’t say “you need to stop touching me.” If I were to say that, someone could easily think “No I don’t. I’m fine doing what I’m doing.”

You are ultimately responsible for your own boundaries, so it’s okay to say “I need you to stop touching me,” or “I need you to move away.”

The thing to remember is that even though it may seem weird to say, the response will almost always be “Oh, okay.” Maybe even an “I’m sorry,” because some people just need clear instructions in the moment. They can’t pick up on the subtle cues of other people. They want to do the right thing, and need clarity.

David Finch, because his wife Kristen was an expert on autism, was able to work with her to come up with a system for living with the neurodiversity in their marriage. It didn’t “fix” him. There was nothing to fix. They were both just able to see the different ways in which their brains and bodies worked, and devise systems for dealing with those differences. They were able to not just avoid the old pitfalls of their pre-diagnosis marriage, they were able to use their differences to their advantage.

Instead of having to spend all that time figuring each other out, or stewing in isolated frustration, they were able to each see their

Wouldn’t it be great if we could all do that every day?

We can look at diversity like a large body of water. It can keep us apart, distant. Or, with the right tools, like a boat or a zip line or an iPad or the right questions, we can meet on the other side.

And under the right conditions, like solid ice or self-education, we can meet in the middle really enjoy one another, and benefit from the experience.