LIVING WITH AUTISM

June 15, 2023

For some time now, I have thought I might have been living my entire life on the fringe of the autism spectrum. I am extremely sensitive to sharp or sustained loud noise and have gotten physically sick attending rock concerts, wedding receptions and movie theaters. But I have also managed to function fairly well through eight decades of life, and never acted like Dustin Hoffmann’s portrayal of Rain Man. Nor was I ever diagnosed as an autistic child, although I have been tested as having a high IQ, a common trait of high-functioning autistics.

Recently, however, I read an article on HuffPost describing nine attributes of autistic adults. I saw myself solidly within all nine of them. The first attribute is a feeling of being different from others. From my earliest memories I have not just felt, but known that I am different from most people. I think differently, work differently, and act differently. That difference has caused me much difficulty and heartbreak over the years, while also rewarding me with many positive accomplishments in both my work and personal life. The HuffPost article notes that autistic adults may find settings that feel more inclusive, as I have with the Unity spiritual center and the community of Maine narrow-gauge railroad fans.

The second attribute listed in the HuffPost article is difficulty with social cues. I wish I had known this one 50 years ago, as I might have learned to mask it or overcome it. This disability, more than any other, has kept me from attaining my full potential in life, both professionally and personally. It has resulted in a long trail of broken relationships, which is the third attribute of the HuffPost article, a confusing relationship history – both romantically or platonically. I have had eleven different jobs over my career, as well as two divorces and a dozen other failed romantic alliances. Over the past decade I have largely overcome this disability through the practice of Unity principles and the persistence of a wonderfully loving and forgiving partner.

The fourth attribute noted by HuffPost is sensory differences. I have always had unusually acute eyesight, hearing, touch, and taste. Until the last decade or so, I had to wear sunglasses even on hazy days or get headaches from the brightness. My hearing is so sensitive that even now, when nurses give me hearing tests, they look at me like I must be cheating, as I can still hear extremely high and low frequencies. As I have gotten older, I have found it increasingly difficult to discern individual voices out of a group, however, or to hear people speaking over background sounds such as road noise. People think I am losing my hearing, but the reality is that I hear too much.

The first time I attended an over-amped rock concert, more than 40 years ago, I thought my head would explode and was physically sick for several days afterward. Watching a Lord of the Rings movie with my grandson 20 years later produced the same effect. More recently, I have not been able to stay in the room at overly loud wedding receptions, which has unfortunately resulted in some animosity with my extended family. Another anomaly that is genetic and may be related to autism, but I have not found it described as such, is my sense of taste. Any food that has been seasoned with cilantro or coriander tastes soapy to me. And cumin tastes so bad to me that I cannot swallow any food with more than a trace in it.

The fifth characteristic of autistic adults listed in the HuffPost article is a desire for routine. I first became aware of this when I introduced my second wife to my former son-in-law 17 years ago. I was taken aback by his comment that I have my “rituals.” The article notes that the routine does not need to be super strict but could be as simple as a strong preference for a certain mug every morning, which I have had for as long as I can remember.

The sixth characteristic, a need for solitude, is essential for me and has been from my earliest memory. Even as a young child, I could not understand why solitary confinement was considered a penalty, as it seemed to me to be a desirable state to be in. I only recently realized that I have never experienced the emotion of loneliness. In a way, that might be a blessing, as I have lived quite happily alone more than half of my adult life. I struggle with any social interactions but have learned to mask my discomfort. I have always felt uncomfortable even in family gatherings, and am usually exhausted after participating in any kind of social event.

Skipping over the seventh characteristic for a moment, the eighth and ninth are closely related to the sixth. The eighth is a dislike of small talk. The HuffPost article notes that for people with autism, small talk can feel totally exhausting. I can only say amen to that. The article also states that people on the spectrum tend to prefer deep, meaningful conversations; it does not mention how hard it is to initiate or sustain such talk. The ninth attribute is a desire for direct communication. Autistic adults tend to communicate in a direct and honest manner and take the statements of others at face value. Fortunately for me, that characteristic has enabled me to develop a writing style that my publishers over the last 50 years have found desirable.

Jumping back to the seventh characteristic, the HuffPost article lists it as more intense interests. It notes that autistics tend to gravitate with passion towards areas of interest as a way to self-soothe. That describes my lifetime experience, especially the soothing part. Over the years I have focused intense interests on bicycling, kayaking, and most of all, the two-foot gauge railroads that once moved people and goods throughout the state of Maine. After reading of this, I realized that many of my friends with similar interests are very likely on the spectrum themselves.

The HuffPost article concludes with references to social media channels that offer connections with other autistic adults, and an especially useful website called embrace-autism.com. This site is created and supported by two women who are both medical doctors with autism. It has no ads and offers no products or services for sale. It does, however, include four self-tests that are commonly used by psychologists to evaluate adults for autism. I took three of the tests (I could not access the fourth) and got nearly identical results from all three. They all placed me not on the fringe, but smack in the middle of the spectrum.

Further reading has unearthed a few other autistic characteristics I have experienced since early childhood. One is sudden and unexpected bursts of rage that dissipate as quickly as they come on. And another is that autistic males frequently have a fascination with railroads, which I have had since I was old enough to know what they are and long before learning about the Maine two-footers. Now I am looking for an expert who can either confirm or deny my self-diagnosis; not to excuse my sometimes odd behavior but to explain it.

DEALING WITH THE REALIZATION

September 4, 2023

A therapist that my partner Paula knows gave me the names of two resources that might be able to confirm or clarify my self-diagnosis of ASD. He also lent me a wonderful book written as a memoir by a thirty-something man who had been diagnosed with Asperger’s Syndrome, a former category of behavior that has since been rolled into the autism spectrum. As the author described his journey of discovery and working to overcome his autistic peculiarities, I found my own tics and behaviors described on nearly every page. When I read some of the passages to Paula, she and I laughed until we cried with recognition of the odd behavior of those of us living with the syndrome. The book is The Journal of Best Practices by David Finch. Highly recommended reading for anyone who lives with the syndrome or is close to someone who does.

Over the last ten years I have learned how to better manage my angry outbursts, my egocentric tendencies, and my frustration with others who do not appreciate or recognize my talents and problem-solving abilities. Following the practices of the Unity spiritual movement has been key to my progress. Every New Year I write one of my odd behaviors on a piece of flash paper and watch it disappear in a puff of smoke. Paula’s patience, forgiveness, and abiding love have also been essential to my learning how to sustain a relationship. We met at Unity on Cape Cod seven years ago and have been sharing a life and home for six years. While I am unlike some of my contemporaries who seem mired in lives of debts and regrets, I wish I had been aware of this condition when I was in my thirties and able to learn then how to manage, control and even overcome the aspects of my behavior that were impeding my relationships, as well as learning how to more fully benefit from the positive aspects of having the syndrome, such as the special ability to find common ground among disparate ideas that generate new ways of thinking about and solving problems.

I do wish I could undo all the insensitive, inappropriate, and unkind remarks I have so frequently uttered over the years. They are now flooding back to me to be recognized and either acted upon or dismissed. I intend to express my regrets and apologies to my first wife Elaine, who raised our three wonderful daughters without the level of day-to-day support and participation that she should have gotten from me while I pursued an advanced degree and other elusive butterflies. I also intend to acknowledge those same regrets to my daughters, who continue to grant me their unconditional love and support despite my shortcomings.

And finally, despite my failure to take life seriously enough to fully develop my own potential for professional leadership and financial success, I give thanks every day for a life of abundance even with limited monetary resources and few dear friends. I have a wonderful partner, I own the townhouse we share, have no debts, and am reasonably healthy and active for a man of 82 years. I also feel good about the public service work I have done for my community since retiring from full-time work 22 years ago, leading our condominium association for the last eight years, and volunteering at the Unity spiritual center and the Salvation Army kitchen in Hyannis. Most of all, I feel blessed to be able to share my thoughts and ideas with others through my biweekly column in our local newspaper, my posts on social media, and my websites.

A FLAWED SYSTEM

September 23, 2023

Finding a psychologist who is willing, able, and qualified to diagnose autism in an adult is proving to be more difficult than it should be, and that might be a good thing. What I have learned is that the process is expensive, time consuming, and often frustrating. And for a high-functioning person like me, entirely unnecessary. From what I have been reading, the only practical purpose of an official diagnosis is for those whose affliction limits their ability to hold a job or fully care for themselves to qualify for assistance from various federal, state, or charity programs.

Much of this information I found on the website of a Boston-based non-profit organization called Autism Speaks. Their website (www.autismspeaks.org) is a treasure trove of useful practical advice and guidance for people like me who are seeking to learn how to better manage our quirkiness. It includes a link to a 38-page document called Adult Autism Diagnosis Tool Kit. I, of course, printed a hard copy and bound it with a color-coordinated spine. When Paula saw that, she just grinned, asked why I didn’t just staple it, and we shared a laugh. She is very supportive of my quirky behavior and has been helping me overcome some of my autistic tendencies.

The Autism Speaks website also includes a link to the DSM-5 criteria for diagnosis. That is The American Psyshiatric Association’s fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. Reading through this section of the DSM-5 left me wondering if any of the eggheads who wrote it had ever experienced autism. I found it utterly tone deaf and out of touch with reality. In its effort to be uber scientific, it seems to miss too many obvious traits and behaviors that would make diagnosis much clearer and easier to separate from other related mental disorders. I also question the association’s 2013 decision to roll Asperger’s Syndrome into the broader spectrum, instead of keeping it as a distinct sub-category of affliction that very well defines high-functioning adult autism.

I also would like to challenge the practice of calling autism a disorder. Certainly, for those at the very upper end of the spectrum it is a disability, but for the vast majority of people who are born with the trait, it can be a blessing. Our ability to focus intently on subjects of interest, to dig deeply into details of our study, and to connect seemingly unrelated bits of information in ways that create new solutions to old problems, has been responsible for nearly all of the big advances in science, technology, medicine, and the arts throughout history. Bill Gates, Elon Musk, Albert Einstein, Thomas Edison, Nickola Tesla, Mozart, Rembrandt, Davinci, and many other famous creators have been identified by their quirky behavior as falling within the spectrum.

And for those calling for a cure for autism, you are heading in the wrong direction. Autism is a genetic condition that cannot be cured, any more than blonde hair and blue eyes can be cured. Instead, please focus on early identification and developing programs to teach those who are blessed with the condition how to overcome its drawbacks and take full advantage of its benefits. And finally, I am already seeing a movement of adults in the spectrum speaking out publicly and touting the benefits of the condition, instead of just masking their behavior as if it is something shameful. I have found that once I recognized the aspects of my behavior that were hurting others (as well as myself) I have been able to better control them. We don’t need drugs or deep therapy, just recognition and understanding.