Hidden in Plain Sight

Diary of a Middle-Aged Aspergian

Tag: high-functioning autism

A day of firsts

Last Saturday, the Asperger/Autism Network (AANE.org) gave me the honor of serving as a panelist for their spring conference: Intimacy, Dating, and Sexuality. Although I’ve used Aspergian Diary as a platform to share my story, Saturday was the first time I’ve actually spoken about my Autism in a public forum. It was also the first time I’ve attended a conference about Autism. For that matter, it was the first time I’ve even been someplace where the majority of people around me were either on the Autism Spectrum themselves or have a loved one who is. So, a day of many firsts.

Saturday’s topic of conversation rarely gets the attention it deserves. Society (including many healthcare providers) often assumes that people on the Autism Spectrum either don’t want or are incapable of meaningful, intimate relationships. We’re introverted, we lack empathy and emotional reciprocity, we don’t like to be touched or hugged, and we’ll never be able to have meaningful personal connections. While some of that is certainly true for some individuals, it’s by no means the rule. (I’ll admit that many of us are difficult to live with—myself included—but that doesn’t mean we’re not relationship material.) People with Autism, especially high-functioning Autism, often want love and friendship—we just don’t always know how to go about getting and sustaining them.

Speaking to Saturday’s AANE audience, Dr. Isabelle Hénault offered some interesting insights regarding empathy (something most people with Autism are assumed to lack.) The truth, Hénault argues, is that people with Autism frequently experience enormous empathy but convey it in ways that are easily overlooked or misinterpreted by their neurotypical partners. For that matter, empathy brings up a surge of emotion that we struggle to identify and convey in real time. I now realize for the first time that when Erica is upset about something, I often show my empathy by doing nice things for her like cooking dinner. But this isn’t what a neurotypical expects, so the message often gets lost in translation.

Since everything changes eventually, acceptance is key. See what is, allow what is, accept what is.

And grow from there.

Karen Lean

Karen Lean, Vice President of the AANE Board and herself a person with Asperger’s, encouraged the room with her statement, “You are capable and worthy of growth, companionship, community, and love.” This is a basic truth that’s easy to forget. When you’ve spent a lifetime getting things wrong in your personal interactions, and being frequently admonished for your social and romantic mis-steps, it’s easy to wind up feeling alone—unworthy of love, friendship, and other forms of human connection. Lean reminds us that we are all human and all deserving and capable of love. (And it helps to remember that plenty of neurotypicals also suck at dating and relationships.)

Relationship success seems to require three key ingredients. First, you must value yourself before others can value and appreciate you. That’s of course much easier said than done, and takes time, but it’s a universal rule equally applicable to neurotypicals and those on the Autism Spectrum. Second, you must have realistic expectations about relationships. And those expectations may look somewhat different when a partner is on the Autism Spectrum. (See Finding Love.) Lastly, and perhaps most importantly, you must never give up. You must keep learning and growing until you get it right. The destination you arrive at may be different than the one you set out for, but to quote the late Douglas Adams, “I may not have gone where I intended to go, but I think I have ended up where I needed to be.”

There’s something to be said for spending time around a group of people to whom you don’t have to explain your quirks. As I was eating lunch (after an hour on stage) a man approached my table. He introduced himself, thanked me for my presentation, and then—without skipping a beat—politely asked if I would like to see some card tricks. (I love my fellow Aspergians!) The best part was that, when I responded that I was in need of a little time to introvert after my presentation, he didn’t bat an eye—not a problem, no further explanation required. He wished me well and headed back to his table without another word. Brothers in arms. (NOTE: I was so touched that I sought him out a little later once I’d regrouped. Not surprisingly, he turned out to have some of the best card tricks I’ve ever seen.)

For me, Saturday was about knowing who you are, embracing that person, and creating space for others to embrace you as well. That’s not something I’ve entirely mastered just yet, but I’m pleased to report that I am a work in progress. In the course of that journey, it was liberating to spend a day engaging my own community, sharing my story, answering questions, and hearing about others’ own experiences. I am grateful to Dania Jekel, Ilia Walsh, Janeka Melanson, and the rest of AANE for putting on this event. In a few hours time, they brought together a community for whom intimacy, dating, and sexuality have such great meaning.

An explanation, not an excuse

As a person with Autism, I’m somewhat predisposed to saying or doing the wrong thing and offending someone. This means I get a lot of opportunities to practice my apology skills—not a natural area of strength for me. It’s not that I don’t care when I’ve wronged someone (quite the contrary actually.) The problem is that it takes me a while to even realize that someone is upset, even longer to identify what I might have done wrong, and longer still to figure out how I can resolve things. By the time I work all this out, the optimal moment for an apology has often passed. Nonetheless, I’ve learned a few important things along the way.

First, I don’t like apologizing for the sake of apologizing. My logical Aspergian brain needs to know why I’m apologizing or it feels like a lie. How can I mean it if I don’t even know why I’m doing it? I know that some people can apologize promptly as soon as they notice they’ve upset someone, but that’s not me. This frustrates my wife to no end; when we have a disagreement she is quick to apologize for her part in things, and then becomes frustrated when my response is simply, “Okay, thank you” without a proffered apology of my own. She’s had to learn that she must let me stew on it for a while, after which I am more often than not able to come back and finally take ownership of the altercation.

Thanks to my wise father (a psychologist with an EQ as high as mine is low) I’ve learned that I almost have something to apologize for. This was a tough concept for me to grasp. I’ve always believed that apologizing means I accept responsibility for the altercation and am admitting that it was may fault. As an Aspergian, that’s a real stretch—even if it really was my fault. However, I’ve come to realize that in any given altercation, both parties inevitably have some culpability. Even if one person “started it,” the other most likely engaged as well—otherwise it wouldn’t be a conflict. Armed with this new perspective, I now know that I can safely apologize for my part in the altercation without automatically accepting full responsibility. Or to put it another way, “fault” doesn’t have to be black and white. “I’m sorry that we had a disagreement and I apologize for contributing to it” doesn’t mean, “I’m sorry, it’s all my fault.”

When trying to address a conflict after the fact, a sincere apology right up front can often disarm the entire conflict and prevent simply rehashing the entire argument trying to figure out who started it. Taking ownership of my part of the altercation is often unexpected, and it creates a safe space for the other person to admit their own culpability. It also sends a message that says, “I really don’t want to keep arguing about this topic, and I’m sorry I contributed to it getting out of hand.”

Of course there are plenty of occasions when I am simply in the wrong, and the conflict really was my fault. I may have used the wrong tone, been insensitive to the other persons feelings and perspective, I may have raised my voice, or I may have lobbed some personal insults as I became increasingly frustrated. This is famously easy for people on the Autism Spectrum to do because  emotional regulation is a struggle to begin with, and most of us have a hard time hearing ourselves in these moments. Obviously in these cases it’s important to acknowledge all this and avoid the temptation to defensively jump to how it was also the other person’s fault.

When things go awry, I often find it helpful to explain my neurology to the other party. This may be as simple as acknowledging that I should have acted faster to resolve the situation, but if I’m comfortable with the audience, it may entail some level of disclosure about my Autism Spectrum Disorder. When doing so, it’s critical to emphasize that, “This is an explanation, not an excuse.” Having Asperger’s doesn’t mean that I’m not responsible for my actions. To the contrary, it means that I have an obligation to be that much more diligent about my behavior. Yet it can be helpful for the other person to know the context of my disability, and know that I would never be intentionally rude and hurtful. More times than not, I have been pleasantly surprised by the positive response this respectful explanation elicits from the other party when trying to put a conflict to rest.

Apologizing is an important component of human communication, and an essential element of conflict resolution. For me it remains a work in progress, as my spouse will readily attest. But I’ve certainly gotten better at it over the year and I hope my lessons learned may be helpful to others in their journey with Autism.

Support on four legs

Gomez and Dev in the T.F. Green airport terminalIn addition to High-Functioning Autism, our oldest child Catherine (who lately prefers to be called “Dev”) has struggled with significant and often debilitating anxiety and depression. After nearly a year and a half in and out of the hospital, we decided last April that she was ready to try for a trip to New Orleans to visit my family. This was not undertaken lightly, as she hadn’t traveled by airplane in over two years, and her anxiety is exacerbated not only by crowds but by changes in environment. During such moments, interacting with other humans can add to her stress more than it helps. However, we had long since observed that, like many children on the Autism Spectrum, she is calmed by animals. We decided to give our two-year-old Labrador Retriever, Gomez, a try as an Emotional Support Animal since Dev had quite a bond with him.

Emotional Support Animals are different than the Service Animals we are most familiar with. A Service Animal is not a pet; it is a working animal—typically a dog—specifically trained and certified to perform certain functions to assist its owner with a physical disability. Because they play a critical role in the daily functioning of their owner, federal law requires that Service Animals be permitted to accompany their humans everywhere they go. Emotional Support Animals, on the other hand, do not generally perform specific functions and usually have no specific training or certification. Their role is to strictly provide comfort to their human with an emotional disability (anxiety, PTSD, etc.) The animal isn’t certified; it is the human who must have medical documentation indicating that they have a qualifying condition and benefit from the Emotional Support Animal. Federal law requires that Emotional Support Animals be accommodated by airlines and in housing, but does not entitle the animal to accompany its owner elsewhere. This is a critical distinction between the roles of Service Animals and Emotional Support Animals.

Gomez gets his wings

In our case there was little question that Dev qualified to be accompanied by an Emotional Support Animal during our trip, and we had no problem obtaining an appropriate letter from her psychiatrist using a convenient template provided by Southwest Airlines on their web site. With that documentation in hand, I cannot say enough good things about how Southwest assisted us with our trip. I had called ahead to make sure they were expecting us, and they bent over backwards to help us check in smoothly. They allowed us to pre-board on each leg of the trip so that we could sit in the bulkhead row where there would be more space for Gomez to stretch out at our feet (the ESA isn’t allowed to sit in his own seat, although Southwest let him do so briefly for a photo op.) On the outbound flight they even gave Gomez his “wings” as a first time flyer—a thoughtful and touching gesture. Gomez did his part too. He’s well-trained but still youthful and can be a bit of an “over-greeter” at times. Yet as soon as he donned his red “Emotional Support Animal” vest, he adopted a stoic demeanor and seemed to know he had a job to do. Sure enough, when Dev was feeling anxious in the airport terminal, he lay down on the floor with her, and when she was unsettled in flight he sat up and put his head in her lap so she could pet him. (Being an Emotional Support Animal is not at all a bad gig for an attention-loving labbie!) Even while we were in New Orleans, Gomez continued to provide support to Dev when she struggled at times to cope with the challenges of being in different surroundings.

Gomez enjoying a brief moment in a “human” seat

Recent focus on traveling Emotional Support Animals has garnered a lot of negative press—much of it warranted. Emotional Support Animals such as Gomez provide invaluable assistance to individuals struggling with emotional disabilities, enabling them to be mobile and function in ways that might otherwise be difficult or impossible. Unfortunately, such emotional disabilities are difficult to define and many out there have seized on these laws as a loophole allowing them to simply bring their pet along on vacation. Things like bringing your “Emotional Support Peacock” along for your trip do not help the cause for people like Dev who truly need and benefit from the support of their ESA. For this reason, I implore all who read this article to be judicious in their decision to bring an ESA on their next journey, making sure that it is truly beneficial and not just a means to bring Fido to Disney World (where he won’t be allowed anyway!)

That said, I have a few tips to offer those who feel they would benefit from traveling with a canine Emotional Support Animal:

  1. Consult with the airline in advance and make sure you have all the documentation they are looking for—you don’t want any last minute hassles at the airport. Every airline has information on their web site about policies for travel with Emotional Support Animals.
  2. If your child is likely to be frightened by the security screening process, also consider reaching out to TSA in advance. You might be surprised to learn that they place great importance on accommodating people with disabilities, and they will work with you in advance to plan out the screening process for your child with Autism. Visit the TSA web site to learn more about the TSA Cares program.
  3. Make sure your dog is well-trained, well-behaved, and well-groomed. That will go a long way towards preventing fellow travelers complaining about a dog on their flight.
  4. Have your dog wear a vest identifying his role so that people know why he’s there. This discourages them from paying too much attention to your dog and exciting him. His role is to provide emotional support for your child, not fellow passengers.
  5. Plan ahead for Fido’s airport bathroom breaks. Many airports now have in-terminal “restroom” facilities for companion animals, complete with artificial turf and a fire hydrant (I’m not making this up.) However, some do not and regardless, Gomez wasn’t buying the fake grass. This actually required leaving the terminal and then coming back through security again, so make sure you leave enough time between connecting flights!
  6. Make absolutely sure your dog can stay with you at your destination. Many hotels are pet friendly these days, but many more are not. Remember that an Emotional Support Animal is not a Service Animal! However, if you explain the circumstances, hotels will sometimes make exceptions. The personal touch goes a long way in working this out.

Bringing Gomez along with us to New Orleans definitely required a lot of advance preparation, and made our travel arrangements a bit more complex. But we believe he made the difference between a successful versus unsuccessful trip for Dev, and we will gladly do it again the next time. I hope your travel with four-legged support will go as well as ours.

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