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This book offers a neurodivergent view of autism. Instead of focusing on how to make Autistics behave neurotypically, Newark proposes an alternate approach and uses her own experience with two high-functioning males to encourage a new way of understanding those who are on the spectrum—by delving into what is going on in ASD brains from their point of view.

Newark outlines the issues she’s faced in being a neurotypical married to someone on the spectrum and how her marriage improved vastly after the later-life discovery of her husband Russ’s autism. Meanwhile, the eloquent prose of Newark’s son Neal adds entertainingly to the text as he details what it’s like to be inside the HFA mind.

Also included is a new look at related conditions such as OCD, ADHD, anxiety, and Tourette Syndrome, and although the book deals mostly with high-functioning individuals, many of its discussions may also be relevant to those further down the spectrum. Finally, Newark suggests new angles for future scientific research based on what she’s learned through seeing the world from a neurodivergent point of view.

 

Table of Contents

Chapter One:

Cracking the Lingo

Chapter Two:

The Needle Debate and the Effects of Blame

Chapter Three:

Perceptions: Pieces of the Puzzle

Chapter Four:

Social Issues: Living Behind a Mask

Chapter Five:

Upping the Ante with Related Conditions

Chapter Six:

Acceptance: Falling Through the Rabbit Hole

Chapter Seven:

Conclusion: Revealing Revelations

Adventures in Autism:

Empathy and the HFA Mind

(Sneak Preview Sample)

 

Introduction

 

 

There are plenty of books on the market which define autism. This is not one of those books. Rather, I present the experiences of my family members (with their blessing) to show the ways in which one neurotypical female has learned to live rewardingly with two males on the high end of the spectrum.

I won’t be regaling you with overly-complicated research or regurgitating the how-to advice of other publications. This is not a step-by-step program, and in fact, those sorts of organizational fixes may not be at all compatible in communicating effectively with an HFA mind. This book is not about how to make spectrum people conform to what you want; rather, it is about striving to understand the world in which they live.

What this book will do is challenge the way societal authorities represent HFA, develop a new vocabulary for discussion of it, share enlightening anecdotes, recount an unbiased list of plausible causation that I believe affects the way we view HFA, and divulge the buried prejudices that hold neurotypicals back from empathizing effectively with those on the spectrum. What I will do here is be completely honest, sparing no one, most especially myself.

I am not a medical doctor and don’t pretend to be, but I am highly educated in science, sociology, psychology, and teaching. However, I offer my experiences not as scientific gospel but as truthful testament which I share mainly because it may help others communicate more effectively with their ASD loved ones or students. Throughout this book, I reference primarily High-Functioning Autism, but much of what I discuss relates to ASD in general, along with co-occurring conditions such as ADHD, anxiety, and OCD. I attempt unbiased balance in all content but make no claims about what I write. I merely promise honesty in what I reveal and respect for those I describe.

 

 

Chapter One

Cracking the Lingo

 

When my son Neal was fourteen, he sent me an email saying, “I think I have this” with a link to a site about High Functioning Autism. His new teenage bedroom was outside the main house, in a mini-house right next door, and although we worked together on his schooling during the day, it was common for him to communicate through email at night. In fact, whenever he wanted to discuss an issue, he emailed me so that we could attach sources to our conversation threads. Autism? I thought incredulously. “No way!” I shot back.

Then he said he had looked it up because he identified with the people in the video we had watched earlier that night: a National Geographic special called Cats: Caressing the Tiger. In that video, there was a segment in which specialists with extra-gentle, trained cats visited a facility housing autistic people.

I was shocked. My son, autistic? My son, whom I had schooled since he was a toddler, who by the time he was in sixth grade already wrote better essays than most of my college students, who had skipped a year in elementary school and was about to skip another one in high school, who was achieving A’s in online college courses for high school credit? My intellectual child identifying with people who were very obviously mentally-impaired?

It didn’t seem possible, but Neal was an excellent researcher and presented this material to me using the critical thinking skills that I had taught him. I started reading, and by the end of the night, I knew he was right. I hadn’t previously been aware that someone without intellectual impairment could have autism. But there it was. He had all the common traits of HFA.

He responded well to people’s questions and did fine with required postings in his college courses’ discussion groups, but he shrank from initiating in-person conversations. His fine motor skills were poor; we’d had to buy Velcro shoes because he couldn’t tie knots until he was ten, and he was slow with cursive handwriting. He was extra sensitive to stress and sometimes anxious; disruptions in routine could affect his ability to do schoolwork. He liked to binge watch the same movie or listen to the same group interminably. He was an articulate communicator in general but sometimes would chatter to himself and was often hyperactive. He was ultra-picky about foods being mixed together. He was clumsy, and when we were hiking (which was often), he walked well when focused on biology or geology or ornithology but at other times butted into us and loped along the trails like an off-kilter wolf.

I was homeschooling Neal through a charter, and I requested a confirmation of his condition through an associated health agency, so that he would be eligible for extra time on math, science and essay tests, which he had to write by hand in person at the college. Then I threw out the medical terminology.

From the first moment a clinical professional tells us or confirms that we have autism in the family, we participate in the standard jargon, beginning with the word diagnosis. Merriam-Webster defines diagnosis as “the art or act of identifying a disease from its signs and symptoms” or as “the investigation or analysis of the cause or nature of a condition, situation, or problem.”

 

The primary definition is naturally the one that people think of first. Therefore, most people quickly associate a diagnosis of Autism Spectrum Disorder with a diagnosis of disease. This in turn implies that HFA, which has been diagnosed through symptoms, is an illness, even if the doctor or psychological professional uses the word condition. If people think that HFA is a disease, then they may seek ways to cure it.

In the early days of autistic diagnosis, this took the form of blaming the parents, especially the mother, using such medical labels as Refrigerator Mother Theory (which assumed that the child was autistic because the mother was emotionally cold). One common “cure” or “therapy” was a parentectomy, the removal of the child from the parents for long periods of time. Another was holding therapy, which involved holding the child tightly and trying to force eye contact. You can observe an example of this strategy in the 1969 Elvis Presley film Change of Habit but of course should recognize that what worked miraculously in the film generally failed in real life and, as with the other “cures,” just traumatized the child.

In 1981, author Barry Neil Kaufman described some of the aversion therapies he’d heard doctors recommend when his third child was diagnosed with autism: electric shock treatments, cattle prods, tying children to chairs to prevent rocking or flapping, and locking them in portable closets without windows. He also said that “even in the most ‘humanistic’ programs, the therapists . . . approached these children with disapproval.”

You might think, with the growing knowledgebase about ASD and the services available to parents, that cruel fix-all cures would be a thing of the past, but the opposite is true. In 2019, an NBC report about two concerned mothers going undercover on Facebook revealed that the misinformation perpetuated in Facebook’s private autism groups (and being peddled by unscrupulous businesses) was leading parents to “cure” their children by using toxic substances like chlorine dioxide (industrial bleach), turpentine, and the children’s own urine—in baths, in enemas, and even by pouring it down their throats.

Clearly, if we want to prevent such appalling parental responses, and if we want to improve communication with people on the spectrum, we must stop trying to “cure” a condition that is not medically curable, and one method of addressing this problem is to stop regarding autistic behaviors as symptoms of a disease.

Softcover $10.95

 

 Adventures in Autism: Empathy & the HFA Mind | Mysite (susannewark.com)

Kindle eBook $8.95

Amazon.com: Adventures in Autism: Empathy and the HFA Mind eBook : Newark, Susan: Kindle Store

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