Hidden in Plain Sight

Diary of a Middle-Aged Aspergian

Accepting Loss and Impermanence

The more things change, the less they stay the same.

Jennifer Howard, 2019

This past Saturday morning we said goodbye to someone I cherished, Jennifer Howard, at age 75. Jennifer was a longtime family friend, a woman seemingly loved by everyone who knew her, and truly one of my favorite humans in the world. Several years earlier we also lost Jennifer’s lifelong partner Mitchell, a man I admired and looked up to all my life, who was as close to a grandfather as I ever had. Truth be told, Mitchell and Jennifer led an amazing life–more than most people could ever ask for. They lived out loud, they traveled the world together, they opened their home–and their hearts–to a constant stream of friends and family. The love they felt for one another, and the joy they shared with others, seemed boundless.

Next to my desk I have a photograph of the Mad River Valley taken from the front porch of the Vermont home Mitchell and Jennifer inhabited for nearly fifty years. This image is a touchstone for me in moments when I am sad or weary, and I think of them every time I look at it. Over the years, when I’ve been in the Valley while Mitchell and Jennifer were away traveling somewhere, I would occasionally stop by their house just to stand on their porch, take in the view, breath deeply, and feel grounded for a moment. And suddenly today they’re both gone from this world. They’re not off visiting the Galapagos Islands; they’re not wintering in Key West; they’re not hiking the Long Trail; and the house that was always so warm feels cold and empty. It’s a reality I’m struggling to absorb, and I even debated if I should put the picture away. All of this has left me asking some fundamental questions about how I process grief and loss as a person with High-Functioning Autism.

The Mad River Valley, as seen from Mitchell and Jennifer’s front porch, as seen from my desk in Rhode Island.

The world can be a bewildering and often overwhelming place for those of us living with Autism Spectrum Disorders. We struggle constantly to understand and interact with the neurotypical world around us. Things happen faster than we can process them, and we’re easily lost in the fog like a pilot who no longer knows which way is up and which way is down. Many with Autism use rituals and repetitive behaviors as a means of grounding, sometimes without even realizing we’re doing so. We are also grounded by familiar people and places, anchor points in an otherwise chaotic world. Humans that we know and love, who we can count on to love, understand, and accept us with all our quirks. Places that we can always go back to, like my hometown of New Orleans–or Mitchell and Jennifer’s front porch in Vermont. The constancy of these people and places, and the connections we share, help us find our bearings and remind us who (and sometimes where) we are.

The problem, of course, is that the world is an impermanent place. This I gleaned from years of studying Shambhala meditation. Our journey as humans is marked by uncertainty, loss, and pain. The harder we cling to people and things, the more elusive they become. This too I know. But while the concept makes sense to me in the abstract, I struggle mightily with its application to my life. Of course, many people prefer certainty and some degree of constancy; that’s not unique to people with Autism. But as a man with Asperger’s, I find change to be far more than uncomfortable. For me, change is inextricably coupled with loss, regardless of whether the change is for the better. This has led me to stick it out with the wrong jobs, friendships, once even a marriage, long after the point when I rationally knew it was time to go. Years after the fact, I still have nightmares about moving out of the house I once lived in, changing jobs, saying goodbye to people. Letting go of people, places, and routines familiar to me is extremely difficult–seemingly impossible at times. And when I do it, whether by choice or not, it leaves me unsettled and feeling a bit lost in the world. Losing first Mitchell, and now Jennifer, has certainly been that for me; my fundamental sense of where I am in the world is somehow altered without them.

With Mitchell Kontoff, 2014

The only thing worse than losing someone you love is watching someone you love suffer. And for the past year and a half, Jennifer’s friends and family have watched her suffer tremendously with her health, as all the while she wanted nothing more than to be reunited with her love Mitchell. To wish anything for Jennifer but a joyous, peaceful exit from this world would be unspeakably selfish. And, truth be told, when I read the text saying she had passed quietly during the night surrounded by her loved ones, my first tangible emotion was relief. Relief for her, and relief for all those who loved her and remained by by her side till the very end. But later in the day, after an early morning dash to Vermont, as I sat next to her, touched her hand and kissed her forehead to say goodbye, I realized there is now a hole in how I experience the world. From her bedside I gazed out the window at the same view of the Valley I’ve seen thousands of times before, and suddenly it didn’t look quite the same anymore. Not more, not less… just different, because Mitchell and Jennifer were no longer there to see it with those who loved them and shared so much joy with them over the years.

Of course people don’t live forever. And according to Frank Sinatra, someday even Gibraltar may tumble. But as the humans we love and admire grow older and eventually leave us, the world doesn’t have to become duller and more uncertain. Instead we should each see it as our role to take their place, to be the person who enriches the world for others, and who eventually passes on the torch to another generation. In the meantime, the Mad River Valley is in fact no less beautiful today than it was yesterday. It is perhaps even a little brighter as I think of the decades that Mitchell and Jennifer enjoyed the view from their house. Someday my own children will hopefully stand in the same spot and think the same of me when I’m gone. In the meantime will I cherish every memory I have of Mitchell Kontoff and Jennifer Howard, and wish them Godspeed wherever their journey takes them next.

The picture will remain on the wall next to my desk.

This post is dedicated to the memory of two amazing humans, Mitchell Kontoff and Jennifer Howard, with profound gratitude for the love, laughter, and good times we've shared over the course of nearly five decades knowing each another. "May their memory be for a blessing."

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.

Sharing an intimate moment

After a long, stressful day Erica and I held each other for a moment this evening before going to sleep. She turned her head slightly and her hair brushed against my face. I tried not to react to the simultaneous itching, tickling, and burning in my nose and cheeks, but she could feel my body tense as my spine shivered. After a moment I couldn’t help but pull away and rub my face vigorously to erase the sensory overload.

“Baby, I’m so sorry,” she said.

I responded, “It’s not you at all love, it just tells me how tired I am.” After a difficult day, there’s nothing better than holding–and being held by–the person you love. How I wish it was easier to actually do that. Such can be life with Asperger’s.

Aspergian man in motion

Rick Hansen training on wheelchair ergometer shortly before embarking on Man in Motion Tour, Biomechanics Laboratory, University of British Columbia, Vancouver, BC, Canada (Photo D. Gordon E. Robertson )

In March of 1985, paralympian and disability activist Rick Hansen set out from Vancouver, British Columbia to circle the globe in his wheelchair. Covering nearly 25,000 miles during his “Man in Motion” tour, Hansen raised $26 million for spinal cord research while changing fundamental perceptions about disability and the need for a more accessible world. Inspired by his story of triumph over adversity, songwriters David Foster and John Parr commemorated his journey home across Canada with the lyrics to “St. Elmo’s Fire (Man in Motion),” a song later made famous by a movie of the same name.

Since my diagnosis with Asperger’s Syndrome in 2013, I’ve struggled with using the term disability to describe myself. It’s at times felt disingenuous to do so; certainly I can’t compare my experience to that of Rick Hansen and individuals with a physical disability, or to individuals with severe psychiatric conditions such as schizophrenia. Yet I struggle nonetheless with basic functions of daily living, particularly when it comes to communicating effectively with others. I may not have physical limitations (other than sensory issues) but I do need understanding and reasonable accommodations to find success in many aspects of my life. And such accommodations are based on having a legally-qualified disability.

Gonna be your man in motion, all I need is a pair of wheels. Take me where my future’s lyin’, St. Elmo’s fire…

John Parr “St. Elmo’s Fire”

The ADA defines disability as “a physical or mental impairment that substantially limits one or more major life activity.” There is no question that High Functioning Autism does exactly this. (The Americans with Disabilities Act includes “interacting with others” as a major life activity, along with communication, thinking, and other functions.) But where does this leave me? Is there a “disability spectrum” and if so, where do I fall on it?

The world Rick Hansen traveled in the mid-1980’s was very different with respect to disabilities. The Americans with Disabilities Act was still years away, there were very limited programs to promote accessibility, and people with disabilities enjoyed little in the way of workplace protections. Few people expected a man who lost the use of his legs at age 15 to circumnavigate the planet under his own power. Thirty-four years later, I’d like to say that has all changed–and indeed much has. Yet we have a long way to go in regard to physical as well as mental and psychological conditions.

I can climb the highest mountain, cross the wildest sea. I can see St. Elmo’s fire burnin’ in me, burnin’ in me. Just once in his life a man has his time. And my time is now, I’m coming alive.

John Parr “St. Elmo’s Fire”

Recently I found myself for the first time having to stand up for my legal rights as a person with an Autism Spectrum Disorder. This forced me to at long last acknowledge and own my status as a person with a disability. For more than six years I’ve managed to avoid this fundamental question about disability, floating along in a liminal space somewhere between disabled, differently-abled, and having a different “operating system.” Yet the bottom line is that my brain does work differently from others around me. My ability to communicate and interact with others is impaired by my condition, the very definition of a disability. I do benefit tremendously from reasonable accommodations both at work and at home.

As I grappled with this question of disability, “St. Elmo’s Fire” suddenly spoke to me in new ways (yes, I grew up in the 80’s.) Through Parr’s song, Rick Hansen’s story has helped me see for the first time the bigger picture of living with a disability. Even now, when I’m struggling with the daily challenges of Asperger’s, I find myself closing my eyes for a moment. I see Hansen as he powers his wheel chair across the farms of western Canada; a man in motion, heading toward a new horizon underneath a blazing sky. With his journey Rick Hansen didn’t just overcome his disability; he fundamentally changed how the world understood it.

I can hear the music playin’, I can see the banners fly. Feel like a man again, I’ll hold my head high. Gonna be a man in motion, all I need is a pair of wheels.

John Parr “St. Elmo’s Fire”

So it turns out the issue for me isn’t just whether I have a disability; it’s how the world sees Autism, and how our society defines disability. In standing up for my rights as a person with High Functioning Autism, I’m not just advocating for my own cause. I have the privilege of speaking on behalf of everyone with my condition, and for that matter on behalf of all individuals with disabilities. I own my Autism; it’s who I am and there should be no shame in that for anyone. If being understood and accommodated means acknowledging my disability, then I am proud to do so–and to hell with whatever stigma our society attaches to disability. I believe Rick Hansen would say the same.

Success with workplace accommodations

Many individuals with High-Functioning Autism have exceptional skills and abilities that are an asset in the workplace. Yet our employment statistics are grim, with a staggering portion of us chronically unemployed or under-employed. This is likely because many Employers mis-classify their Autistic Employees’ communication difficulties, personality quirks, and executive function challenges as behavior and/or performance problems rather than recognizing them as disabilities inherent to Autism Spectrum Disorders. Everyone loses out when this happens, as many of these individuals can succeed in their careers when provided with simple and reasonable accommodations. Yet it can be remarkably difficult for people with invisible disabilities such as High Functioning Autism to obtain accommodations.

For better or worse, I’ve had to learn quite a bit about this subject (certainly more than I ever wanted to know) so I thought I would share the information I’ve gathered. As always, I hope it may be helpful to some of you.

DISCLAIMER: Although I have tried to present information as accurately as possible, I am not an attorney and this article is not intended to serve as legal advice. Readers are strongly encouraged to seek qualified legal counsel before acting on any of the matters discussed herein. Or to paraphrase the late Douglas Adams, anything in this article may be wrong.

Employer’s obligations under the ADA

The ADA requires that Employers provide reasonable accommodations to otherwise qualified Employees with disabilities so long as such accommodations don’t present an undue hardship to the Employer. An Employer’s obligations under the ADA are triggered as soon as the Employer become aware that an Employee may be experiencing a performance problem that could be helped by an accommodation. Such notice doesn’t have to be written and the Employee doesn’t even have to use the word “accommodation.” The Employer may ask the Employee to fill out a form or other paperwork, but they may not ignore the original request even if it wasn’t submitted via the Employer’s preferred method.

RESOURCE: The detailed regulations for the ADAAA are available in 29 C.F.R. 1630. Note that the most helpful (and longest) portion of the document is its Appendix: “Interpretive Guidance on Title I of the Americans with Disabilities Act.”

The ADA and the ADAAA

Employers will ideally have human resources personnel well-versed in the latest version of the ADA, and have procedures in place to ensure that Employee requests for accommodations are handled fairly and promptly. Unfortunately, this isn’t always the case and some Employers have a difficult time understanding the nature of their Employees’ social/communicative disorder–especially in the case of high-functioning individuals. This can make the the accommodations process for High-Functioning Autism unnecessarily complicated and adversarial. The original ADA is partly to blame for this problem, establishing a threshold for mental disability that required the Employee’s mental condition to be so severe and pervasive that they were likely to be considered unqualified for the vast majority of jobs. This was of course contrary to the ADA’s goal that all disabilities should be treated equally.

In 2008, Congress clarified its intent with passage of the ADA Amendments Act (ADAAA) which made it much easier for individuals with mental disabilities to qualify under the ADA. As described in the EEOC’s fact sheet on the ADAAA, “An impairment does not need to prevent or severely or significantly restrict a major life activity to be considered ‘substantially limiting.'” Thus an Employee need only demonstrate that their condition interferes with activities of daily living such as “communication” and “interacting with others.” And because these are cornerstones of Autism in all its forms, almost every person on the Autism Spectrum will be qualified regardless of function level. The ADA even specifically includes Autism in a list of conditions that are virtually always disabilities. (Note that individualized assessment is still required in every case; the ADA does not provide for any per se disabilities.)

RESOURCE: A good resource for understanding the changes contained in the ADAAA is the EEOC’s Questions and Answers on the Final Rule Implementing the ADA Amendments Act of 2008.

The interactive process

When Employee’s need for accommodation is obvious (say, an individual uses a wheelchair and requests a ramp to access their office location) the Employer can simply grant the requested accommodation. Otherwise, the Employer must engage in the ADA-defined “Interactive Process” which is the means by which the Employer works with an Employee to determine if the Employee has a covered disability and if so, how best to accommodate it in the workplace.

The Job Accommodation Network (JAN), an excellent resource oft cited by the U.S. Equal Employment Opportunity Commission (EEOC), provides a succinct guide to determining disability accommodations under the 2008 ADAAA. Under the ADAAA, a disability is defined as an impairment that substantially limits a major life activity. So as described by JAN, the basic steps of disability determination are:

  1. Does the employee have an impairment? If yes,
  2. Does the impairment affect a major life activity? If yes,
  3. Does the impairment substantially limit the major life activity?

For this last question, JAN states that if the impairment is on the EEOC’s list of conditions that are almost always found to be disabilities, an Employer needs only to obtain documentation of their Employee’s diagnosis and then they should move on to making accommodations. According to the ADA and the EEOC, extensive assessment should not be required because Autism inherently affects, as discussed above, brain function and communication. (Note that it may still be beneficial for the Employer and Employee to discuss specifically how the disability affects the Employee’s work, not for purposes of determining qualification but to determine how best to provide accommodations.)

It must be emphasized that the interactive process is a dialog between Employer and Employee. Outside expertise may be helpful in some instances, but accommodations are ultimately determined between Employer and Employee–not “prescribed” by a healthcare provider. After all, the Employer and Employee are typically the most knowledgeable about what is needed and what is feasible in their particular workplace. (This seems to be a frequent point of confusion for some Employers, who believe a doctor must stipulate what they’re required to do for their Employee.) The Employer may request documentation and/or additional evaluation when the Employee’s need for accommodations isn’t “known or obvious.” However, the ADA places clear restrictions on what’s appropriate for the Employer to request, and such requests must be specific to the disability in question.

RESOURCES: Barbara Bissonnette’s Employer’s Guide to Asperger’s Syndrome is an excellent resource for understanding the workplace needs of employees with High-Functioning Autism. The Job Accommodation Network, a resource endorsed by the U.S. Equal Employment Opportunities Commission (EEOC) provides additional examples of reasonable accommodations often used for individuals on the Autism Spectrum.

Employees have obligations too

The Employee also has responsibilities in the reasonable accommodations process. The Employee must make their Employer aware that they might need accommodations. The Employee must actively participate in the Interactive Process in order for it to be successful. In many cases the Employee may not know exactly what accommodation will work best, but they must at least identify the problem(s) they are trying to solve. Meanwhile, the Employer doesn’t have to provide the exact accommodations that the Employee requests, and may propose alternatives that so long as the same goal is achieved.

It’s also important to recognize that ADA protections are not a “get out of jail free” card for Employees, and there are certain extreme behaviors that an Employer is never required to tolerate (such as acts or threats of violence.) Also, ADA protections are not retroactive and do not apply to behavior that occurred before the Employee made their employer aware of their disability. This is why it is crucial to request accommodations before problems arise.

Finding the right accommodations

As part of the ADA-defined Interactive Process, the Employer must work with their Employee to determine what accommodations would enable the Employee to perform the essential functions of their position and/or “enjoy the equal benefits and privileges of the workplace.”

Although every individual on the Autism Spectrum is unique, many with High-Functioning Autism are likely to need similar types of accommodations. Common examples include:

  • Provide a mentor or “buddy” in the workplace – an empathetic colleague who is willing to provide support, advice, and assistance with integrating socially into the workplace.
  • Give clear and direct feedback if the employee behaves in ways that seem disrespectful or are inappropriate to the situation (such as interrupting others or telling a distasteful joke.) Identify areas for improvement in a fair and consistent manner.
  • Make sure instructions are concise and specific; do not assume employee will infer meaning from informal directions. When possible, provide instructions in writing, not just orally.
  • Locate employee’s office space away from audible distractions; and/or Allow employee to wear a noise-cancelling headset to reduce auditory stimulation.

Of course one size does not fit all. The range of potential accommodations is infinite and must be tailored to the individual employee. An excellent source of information is the Job Accommodation Network (JAN) which has a wealth of information on Autism Spectrum Disorders in the workplace.

When an Employee is too high-functioning

Individuals with high-functioning forms of Autism often develop compensating mechanisms that help them “pass for normal” to a greater or lesser extent. These individuals often develop strategies that help make up for their difficulty with executive functions as well, enabling them to succeed in professional careers. This cannot be construed to mean that individuals with High-Functioning Autism are somehow “less disabled” than other individuals with Autism Spectrum Disorders; it means only that they are able to use their intelligence to mitigate the deficits inherent to their condition.

The unfortunate Catch-22 is that such successful compensation leads Employers to believe that their employee is too high-functioning to require accommodation. This is why the ADA prohibits Employers from considering the effects of “mitigating measures” when considering requests for accommodations, and specifically classifieds learned behaviors and compensating mechanisms as forms of mitigation. Therefore the Employer is obligated to view the Employee’s underlying condition rather than the net result of their compensation.

Putting it all together

If the process works as it should, the Employer and Employee will agree on and implement accommodations that will help the Employee succeed in their position. Ideally the Employer will document the agreed-upon accommodations in writing and take steps to make sure they are properly implemented. It’s important to note that considerable confidentiality applies to accommodations; the Employee’s immediate supervisor needs to know what the accommodations are but is not entitled to know the details of their condition. Similarly coworkers only need to know that the Employee is subject to accommodations but do not need to know why.

When the process fails, Employees will generally need to seek resolution through their state disabilities commission and/or the U.S. Equal Employment Opportunity Commission (EEOC). These two entities automatically cross-file so a complaint filed with one normally results in a complaint automatically being entered by the other. Unfortunately this can be a long, drawn-out process and it can be difficult to negotiate a solution.

However you get there, having appropriate and reasonable workplace accommodations in place benefits both the Employee and their Employer. Most individuals on the Autism Spectrum have both unique challenges and unique skills. The reasonable accommodations process is time (and occasionally money) well spent. The Employee of course benefits from greater opportunities to succeed in their career pursuits, while the Employer benefits from a happier and more productive Employee, and a more diverse and inclusive workplace. The ADA, like the 55 MPH speed limit, is not just a good idea; it’s the law.

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.

I’m a legal alien


Photo Gaetan Lee (downloaded from Wikipedia Commons)

You might not think it because I present as fairly normal to most people I encounter on a day to day basis. But the truth is that I often feel like a foreigner in a strange land. Or perhaps on a strange planet. I’ve studied the language long enough to order a meal or exchange pleasantries with the locals. With practice I’ve learned to carry out a fairly extensive conversation when necessary—and I generally don’t mind doing so. Yet I’m still not truly fluent in the language. Everything I say has to be scripted in real time, every bit of dialog translated back and forth in my head so that I can process it. None of this is evident from the outside—which is why Autism/Asperger’s is often referred to as an “invisible disability.” And this invisibility is why I’ve learned not to be astonished when someone tells me I “present too well” to be on the Autism Spectrum or have a disability; that I shouldn’t need any sort of accommodations because I’m “a sophisticated guy” (yes, these things have actually been said to me.)

Despite my “normal” outward appearance, there is actually a huge overhead of cognitive work taking place behind the scenes during every waking moment of my day. It’s hard for most neurotypicals to comprehend what this is like because the communication functions we’re talking about happen automatically for them without much thought. By comparison, my brain is in constant overdrive trying to figure out the right thing to say, work out what other people might be thinking or feeling, and identify my own feelings in real-time. By the end of the day, or after a particularly intense meeting, I am exhausted and drained—both physically and mentally. During prolonged, emotionally charged exchanges, I even reach a point occasionally where I literally can no longer understand what the other person is saying. This particular expression of Autism is especially scary and disorienting for me when it happens. The other person’s words stop making any sense to me and I have to abruptly halt the dialog.

When mastering a foreign language, one typically gains fluency over time. As proficiency improves, the cognitive overhead of translating and processing diminishes and eventually goes away altogether. Unfortunately, the same is not true of Autism. Those of us on the Autism Spectrum learn to emulate the behavior of others; we memorize expected responses to certain scenarios; and we apply past experience to figure out what’s appropriate or inappropriate to say. Those of us with a high IQ become so adept at these compensations that only those closest to us would suspect anything is “different.” So when we inevitably mis-step in our interactions with others on occasion, it is assumed to be an attitude or behavioral problem, rather than recognized as a communication problem. Regardless, at no point does this process ever become fluid or fluent—it’s only a form of compensating for those aspects of our neurology that work differently from the general population around us. For even the most “high-functioning” among us, figuring out the thoughts, feelings, and perspectives of others is still a deliberate, conscious process instead of an autonomic one.

All of this is because Autism in all its forms is characterized by a fundamental impairment in reciprocal social interaction and communication, regardless of age or level of function. This impairment results from a deficit in theory of mind—the ability to automatically attribute mental states to the self and others. Research shows that those of us with Asperger’s/High-Functioning Autism are particularly adept at applying abstract rules to overcome this deficit. However, such abstract reasoning doesn’t help with interpreting non-verbal cues. This means that our ability to compensate makes our Autistic traits are far less “noticeable” but then we unexpectedly stumble when the situation calls for an ability to read others that exceeds what’s in our toolset.

As we grow older with an Autism Spectrum Disorder, we expand our repertoire of tools to compensate for our significant underlying communication deficits. But we’re only becoming more proficient at compensating, not more proficient at interacting with others. Autism is hard-wired in the structure of our brains. We can certainly learn and adapt, but Autism is a lifelong condition that does not substantially change or “get better” with time. (In a future post, I’d like to talk about the ways in which modern neuroimaging technology has helped us make huge leaps forward in our understanding of the Autistic brain.)

So if you find me exhausted and ready for bed by 9:00pm, or needing to leave the office for a little while after a long meeting, please understand that my brain is most likely on overload and needs rest. If I seem to be having a perfectly normal conversation and suddenly say something completely inappropriate, please understand that my normal compensation tools may have temporarily failed me and I need help getting back on track. If you think I may not have picked up what you’re feeling, you’re probably right—and it’s fine if you just tell me plainly what I need to know. But above all, please remember that I’m a legal alien living in a foreign world. No matter how hard I try, I’m not always going to get it right. I’m okay with that, and I hope you can be too.

Finding love

IMG_0006My wife is the most amazing person I know. “Nobody should feel bad for Sam,” a close friend once said of my marriage. He’s right. Erica is one of the most kind, loving, and generous people I’ve ever encountered, and I am incredibly thankful for the happenstance that brought us together. Among Erica’s many qualities, she has an EQ that’s at least as high as her IQ, placing our union squarely in neurodiverse territory. That makes for a number of unique challenges over and above what every marriage entails. But we make it work, one day at a time. I believe there are three factors that get us through the difficult moments: 1.) We have both learned to be flexible in our expectations based on our respective neurologies; 2.) We are equally committed to constantly improving ourselves and our partnership, learning and adapting as we go; and 3.) We deeply love each other and, even when everything else seems to go awry, we are truly committed to making our relationship work.

Erica and I have both learned to be flexible in our expectations about marriage and partnership. Unfortunately, the burden of flexibility often falls disproportionately to the neurotypical partner and we are no exception. No matter how much the ASD partner wants to fulfill every expectation their partner has, the reality is that it’s often difficult to do so. For example, Erica has certain expectations about how her husband should respond emotionally in moments when she is anxious or stressed. Unfortunately, emotional reciprocity is an inherent area of weakness for those on the Autism Spectrum. We’re simply not wired for it (PET studies have shown that the Autistic brain processes emotion in the logic center rather than the amygdala.) It takes me a while to process and  communicate my feelings, and that delay can be easily misinterpreted as a lack of support. So Erica has had to learn that I show my emotions in different ways, and that she has to translate between my emotional expressions and hers. Meanwhile, I’ve had to learn that my partner doesn’t know what’s going on inside my head at all times. (Like most Aspergians, I initially assume that other people automatically know what I’m thinking.) So I’ve learned that I need to tell her what I’m thinking instead of becoming snippy when she doesn’t figure it out for herself.

This makes a good segue to my next point—the importance of commitment to constantly learning, improving, and adapting. As an Aspergian, I often forget that I still have a lot to learn about the world. (By default, I usually assume I’m right and I already know what I need to know—obviously far from true.) Erica constantly challenges me to do better with the things I’m not especially good at (communication, emotional reciprocity, emotional regulation, etc.) She also works hard herself to learn from our missteps so that she can communicate better with me in terms I understand and can respond to. For example, she’s learned that I “time out” at a certain point in conversations and if the subject is important, we may need to table it and come back to it later. I’ve meanwhile learned that I need to be responsible for making sure that actually happens. I’ve also learned that there are ways I can make her feel heard and validated even if I can’t immediately show the specific support she’s looking for. That goes a long way toward bridging the gap between our respective operating systems. I may not be able to promptly demonstrate the emotional response she expects me to, but I can employ alternative tools so that my wife gets the support she’s looking for from her husband.

All of this is work. It can be exhausting at times, and there are moments when we question why we’re doing it. But Erica is the love of my life—I can’t picture being with anyone else; she feels the same. We are deeply committed to each other, our family, and our life together. In the moments when everything seems to come unraveled, this love and commitment is what sustains us and it’s the ground we come back to. When your basic parameter is that failure is not an option, it focuses your energy on finding real solutions to the problems you’re facing.

Being together means a lot of compromise and a lot of negotiation—for both of us, but perhaps most of all for my neurotypical partner whose brain is more flexible and adaptable than mine. The situation is inherently unfair. As an Aspergian, I struggle every day to function in a world that wouldn’t be a problem for me if everyone’s brains were wired like mine. Meanwhile Erica must learn to interact daily with a person who’s communication style and emotional responses are different from everything she’s come to expect from a neurotypical world. This unfairness is compounded by the reality that it’s often easier for the neurotypical to adapt than the Aspergian. So while we both put in the work, a disproportionate share of that burden inevitably falls to the neurotypical partner.  If you insist on keeping track and ensuring you meet exactly in the middle, you will lose every time. It’s been said that the only way to win is to not play the game; I say the only way to win is to not keep score. Or if you must keep score, focus on the effort put in rather than the results that are obtained.

Life on the Autism Spectrum can be, for many, a fairly lonely existence. Autism makes it inherently difficult to engage with others emotionally, let alone communicate and build enduring connections. Even when we’re surrounded by other people, Autism can have an isolating effect because it’s difficult for us to understand and be understood by others. Many parents of children with Autism worry whether their son or daughter will ever be able to find love, let alone a long-term partnership. So while acknowledging that my situation is more the exception than the rule, I’d like to debunk the myth that people with ASD’s can’t have happy, meaningful relationships. Autism means our brains work differently; it doesn’t mean we don’t want love, and it doesn’t mean that we are incapable of finding it. (NOTE: PBS has a fantastic documentary on this subject, Autism In Love, that I highly recommend.)

Erica is the perfect partner for me, and I’m apparently at least “perfect enough” for her. She loves me, supports me, and makes me want to be the best husband, partner, and father I can be. That’s not to say we don’t face constant challenges. What sees us through in the end is our shared love, devotion, and a commitment to constantly improve ourselves and our relationship.

That’s our story of finding love. Your individual mileage may vary.

Coming out with Asperger’s

30725489_10102926121905065_5494915647366234112_oMy name is Sam and I am a 45-year old man living with Asperger’s Syndrome. Or to borrow a term from John Elder Robison, I am an Aspergian. This may come as a surprise to some long-time friends and acquaintances who didn’t know this about me. Then again, it might not. Either way, Asperger’s isn’t who I am. Who I am is a father, a husband, a provider, a friend, a companion. I am an emergency management professional and higher education executive. I’m a motorhead, a music lover, a carpenter, a hiker, and a home brewer. Asperger’s doesn’t define me—I define Asperger’s.

Discovering in 2012 that I have Asperger’s Syndrome (these days called “High-Functioning Autism”) certainly did explain a lot, unexpected as the news was. “Let’s put it this way… If you are in a room with 99 other people out of the general population, statistically you are likely to be smarter than 98 of them. On the other hand, you are also likely to be the most ill-equipped person in the room to handle that situation gracefully.” This was the neuropsychologist who provided my Asperger’s diagnosis after two exhaustive days of testing and evaluation, summarizing the basic implications of my Autism into digestible form. Very smart but socially awkward. High IQ, low EQ.

Of course, I’ve lived with this “High-Functioning Autism” my entire life. It’s the only existence I’ve ever known, the fundamental framework through which I perceive and interact with the world around me. Every experience of my lifetime has been informed by my Autism because it is the operating system through which I process everything I encounter. (I’m told that neurotypicals—those “normal” people without Autism—actually experience the world very differently than I do, but I find it difficult to wrap my brain around such a notion.)

As the parent of a child on the Autism Spectrum, I’ve learned that people have wildly varying levels of understanding regarding Autism Spectrum Disorders. This is in part because the Autism Spectrum encompasses such a wide range of presentations. When I tell someone I have Autism, they are often skeptical at best because I don’t meet their “Rainman” expectations. (Please note: If you drop a box of matches on the floor, I will have no idea how many are there.) And with people so often misunderstanding (or mis-assuming) what High-Functioning Autism means for me, I’ve become reluctant to share my diagnosis with others. But to understand me, you have to understand my Autism. So I’ve decided it’s time to “come out” as an Aspergian using this blog as a platform.

I will admit that my 2012 diagnosis took me by surprise. For the first 39 years of my existence I was of course aware I was more than a bit quirky, and certainly socially awkward. But I never thought of myself as having “a different operating system.” To the contrary, I always assumed everyone around me experiences the world the same way I do. True, I struggle with communication and social interaction while my peers handle such things far more adeptly. As a small child I would have major tantrums over a simple haircut (I couldn’t stand the sensation of scissors cutting through my hair—something most people can’t even feel. I still don’t like it to this day, though it doesn’t usually result in a meltdown any longer.) I have far more sensitive hearing than others, I hate putting anything like sunscreen on my skin, and certain types of lighting make my head throb. Meanwhile I always assumed that everyone else has the same type of visual/spacial cognitive abilities that I do—abilities that I now know I share with Temple Grandin and a surprising minority of others in the world.

Living with (and struggling with) the challenges of Autism can make it easy to lose sight of the many things I am to many people. Recently I’ve found myself more and more caught up in the challenges of my Autism. “Stuck” if you will, and allowing it to impact my work life, my family life, and how I fundamentally feel about myself. Moreover, I’ve allowed the attitudes of others about my Autism to further inform those feelings.

So I’ve challenged myself to start writing this blog as a means to get unstuck, to move forward again, and to share my journey with others. I believe these posts will help me be more mindful of the need to live better, manage my Autism better, and be a better citizen in the world. I also offer my story in hopes that it might be helpful and inspiring to others traveling along similar paths.

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