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Embracing Chaos: The Book

  • Posted on December 2, 2011 at 8:00 AM

As some of you may recall, I want to write a book called Neurodiversity at Work. I still do, though in my recent upheaval I took a good, hard look at this goal and the skills and proficiency required to pull it off. I also looked at other autism-related books I would like to write. And I came to the inescapable conclusion that I would need to write two other books before I could broach Neurodiversity at Work with the experience, skill and connections it deserves.

When I first started this blog, I had a book in mind. It was something of a cross between a memoir and an advocacy piece. At the time, I wanted to make the idea viable for traditional publishing, and for the intervening years I didn’t see a way to do it. The audience it could be expected to reach within the first year or two of publication just wasn’t large enough, not without changing the focus of the book dramatically. For the last two years, I’ve been researching self-publication, and I find I’m drawn to it—at least as far as nonfiction goes. The relatively narrow audience for the book doesn’t matter nearly as much if the book is self-published; if you have the skill and wherewithal to market the book, you can profitably self-publish a book with a narrow audience.

So, in turning away from Neurodiversity at Work, I’ve come full-circle back to my first book. This time I’m not dwelling on how to make it marketable to a traditional publisher; I’m dwelling on how to make it a book that fulfills a need for its audience. It will never be a bestseller, and that’s fine. This book, like this blog, is for people who already care, for people who want to understand autism in a way that doesn’t reflect our fears of difference, but instead reflects our desire to understand, uplift and assist those we love who carry the diagnosis.

In outlining and writing this book, I’m taking great care to ensure one important difference that sets my book apart from so many parent books: I’m not telling my children’s stories. Of course, it’s this difference that will make it less appealing to traditional publishers. Embracing Chaos: Discovering Autism and Neurodiversity will tell my story. In this book I will describe how I came to see autism and neurodiversity, explain why I have the priorities I do when it comes to raising my children and advocating for change, and invite others to join me. I’ve seen so many books that purport to tell the stories of autistic children, while really advocating for whatever treatment or approach the parent chose for their child. Those books, the kinds of books published by traditional publishers, promise a cure, a recovery or some other conclusion that promises a semblance of normality. My book will show that normality doesn’t have to be a goal, while arming those seeking a different path with insight and resources to help smooth their journey.

But it’s not just a book for other parents. There have been so many times when I have tried to verbally explain to those on the periphery of our lives what I believe and why. Often, due to my own struggles to communicate verbally, it seems necessary to direct them to my blog and the list of blogs on my sidebar to really make the point. This is fine for those who are comfortable in the blogosphere, but many aren’t. If I had a resource, a book, that could explain it—I would gladly have directed them to that instead. And this, for me, will be that book. But while it will be my story, my journey, I also want this to be a book others can hand out to those on the periphery of their own lives. So, it’s not a traditional memoir, either. It is intended to be a source of information and understanding for those of us who refuse to take sides, or rather for those of us who feel that there are answers and truths evident in multiple arenas within the autism community. (After all, it would be disingenuous to suggest we don’t take any sides at all.)

I hope it’s well received by those for whom it is intended, by those who—like me—feel they need a resource, a reference, a tool to stave off those exhausting conversations in which we try to justify to those who mean well why we, too, are not adamantly advocating for a cure. I hope it’s also a book that adult autists might read to gain insights into us parents who, while not supporting and agreeing with everything they say or do, really are allies in our goals to make this a better world for all those deserve to be heard, appreciated, understood and accommodated.

That is my hope. Only time and publication can determine if I will achieve those goals. But I have to try. I have to set the stage. Then, I have to move on to other issues that need to be addressed.

Neuro@Work

  • Posted on May 27, 2011 at 7:56 PM

I have recently been working on a nonfiction book which I had tentatively entitled Neurodiversity at Work: A Manager’s Guide.  In my mind, I envisioned it as a research-based how-to manual managers could use to open up their organizations to the neurological diversity of the workforce available to them.  In my heart, this was the book I wanted to write, because it’s the book I wanted to be put into practice.

The deeper I got into the project—accumulating research material, writing chapters, delving into the heart of the how-to—the more I grew wary of my topic.  More and more of my revised pages were devoted to the importance of opening up organizations to the neurologically diverse; fewer were devoted to the practical aspects of how to accomplish this goal.  As I’ve progressed I realized something as a writer that I already knew as an advocate; I realized that the audience I want for the book I very much wanted to write does not, yet, exist.

There are still too few arguments for opening organizations up to a neurologically diverse workforce—despite the law, despite the social movement, despite the justice and advantages.  It’s not that companies are struggling with the how; it’s that they don’t really understand the why. 

Simply put, I realized I needed to write the equivalent of a prequel, then invest my time and energies on a follow-up how-to book.  Advocacy first, practical how-to second.

Now, with this decision in place, my reluctance is replaced with energy and drive.  But, it’s also rather sad.  It’s sad that the advocacy book is necessary.  It’s sad that we’re still at this point where people need to learn how doing the right thing is in their own best interests.  It’s sad that we’re still so focused on normal that we forget the power of extraordinary.

So, it’s time to start back at the beginning.  It’s time to write the book that needs to be written.  And to hope that, someday, the book I really want to write will need to be written, too.

The Legality Mentality

  • Posted on April 2, 2011 at 8:05 AM

Previously, I have published three short synopses—in blog post style—of chapters for the non-fiction book I’m working on, Neurodiversity at Work: A Manager’s Guide.  First, I wrote a post introducing the neurodiverse workforce, and then I addressed the need to cope with the challenges of inclusion, and the possibility to capitalize on a diverse workforce.  My third post concerned business rhetoric, and now I explore the legal mentality.

The Law

In the United States, there is legislation that seeks to protect the interests of workers with disabilities.  In theory, these laws apply to both visible and invisible disabilities.  In theory, these laws protect the interests of workers with autism and Asperger’s.  In theory, these laws ensure that workers with disabilities who are otherwise qualified to perform the work should not be denied employment or excluded from consideration because of their disabilities.  In theory, workers whose disabilities interfere with their performance of work they are qualified to do should be provided with reasonable accommodations.  In practice, businesses’ responses to this legislation are inadequate to achieve these goals.

Compliance & The Inadequate Business Response

Ethically-managed businesses strive to comply with all applicable laws, including legislation that seeks to protect the interests of workers with disabilities.  However, laws evolve as they are interpreted, tested in court, and re-interpreted.  A compliance mentality leaves businesses vulnerable to the possibility that their attempts to comply will be found inadequate if their standards are challenged in court.  Considering compliance standards are rarely applied to individuals with invisible disabilities and rarely address subtle prejudicial business practices, the main thing preventing a much wider application of the law is that relatively few people seek to challenge employers’ interpretations.

Between Compliance & Inclusion

Émile Durkheim, the father of modern social science, is quoted as having said: “When mores are sufficient, laws are unnecessary; when mores are insufficient, laws are unenforceable.”  The mores concerning workers with disabilities are insufficient in this society.  We can attempt to legislate equality, but we cannot enforce it; for those businesses run with insufficient mores, we are left with compliance.

Compliance, however, does not achieve the goal of inclusion, nor does it provide employers with the benefits of an inclusive working environment.  Most businesses accept that hiring disabled workers is a cost of doing business.  By focusing on compliance, they strive to attain the minimum necessary to meet legal standards.  By focusing on inclusion, employers can be assured that they not only meet legal standards, but they will also exceed current interpretations of the laws enforcing those standards.  Furthermore, they will attain the benefits only included workers can provide.

Inclusion vs. Rhetoric

  • Posted on March 5, 2011 at 12:43 AM

Previously, I have published to short synopses—in blog post style—of chapters for the non-fiction book I’m working on, Neurodiversity at Work: A Manager’s Guide.  First, I wrote a post introducing the neurodiverse workforce, and then I addressed the need to cope with the challenges of inclusion, and the possibility to capitalize on a diverse workforce.  Here I will explore the rhetoric of business in contrast with the language of inclusion.

The Rhetoric of Business

One of the hallmark linguistic requirements of the contemporary business environment is the use of politically correct language.  The emphasis on an externally set linguistic standard betrays a vital fact that most seem quite unaware of, namely that respect is not dictated from the outside in.

Personally, I find that if you genuinely respect people, then respectful language will naturally flow through your use.  If, on the other hand, you are inclined to devalue people, then an externally enforced linguistic standard only seeks to cover up that disrespect.  While the purpose of politically correct language is to express tolerance, the reality is that an externally enforced standard does not breed tolerance, merely compliance.

By following the strictures of politically correct speech and further by attempting to enforce a distant, façade of respect through public and employee relations programs, business cultures convince themselves they practice tolerance.  And yet the problems of internalized prejudice continue.  In gender, race, and disability relations, equality is not attained despite our legislation and the enforcement of politically correct language.  The language used in businesses becomes empty rhetoric that is not played out in the culture of the business or in the everyday choices where prejudice holds its greatest power.

The Language of Inclusion

The language we choose to use can influence the way we think about the world and the way we perceive each other.  Choice is a significant factor, however.  Underlying the choices we make is the respects we hold.  I often refer to my children as children with autism, autistic children, autistic or even, though I try not to, Silly Willy.  According to political correctness, this is wrong; yet my regard for my children does not change.  Recently, Dave Hingsburger of Rolling Around in My Head wrote a post about the language we use.  There are some words and phrases that are truly offensive.  However, most terms can be used with respect.  Disability is not an ugly word, nor is it an ugly state of being.  It is only ugly when we have no respect for those who are disabled.

The language of inclusion is less about the words we choose and more about what we mean when they use them.  If you think an autistic person is worthless, it does not matter that you use people-first language.  You can call autistics “people with autism” all you like, but if “autism” means “inferior” to you, then everything else you say and do is going to communicate your prejudice loudly and clearly no matter how politically correct you are.

The Transition

The language of inclusion is not about political correctness or the façade of tolerance.  It’s about genuine respect.  You can’t fake it.  But you can shape it by making new choices for new reasons.  It can be shaped within a culture by people who use words with respect.  In order to make this transition, you need to incorporate respect into the culture of your business.  It’s not just about the words you use, but the ideas and beliefs you express.  This respect must come from a force within that organization, and it must be disseminated throughout the organization.  Respect diverse workers.  Respect diverse partners, suppliers, and customers.  Respect the diverse world we live in.  Inclusive language will naturally follow.

Coping and Capitalizing

  • Posted on February 14, 2011 at 11:41 AM

Last month, I wrote a post about the first proposed chapter for my book, tentatively entitled “Neurodiversity at Work: A Manager’s Guide.”  This post continues the process of summarizing the book I am writing.  The purpose of this chapter is to provide an overview of the changes necessary to effectively and equitably include neurological diversity into an organization’s management strategies.

In the business world (and most of society), the focus concerning any form of disability is on the need to cope.  Individuals with disabilities need to cope with their differences, businesses need to cope with their need to accommodate, and co-workers and managers need to cope with the changes.  Little attention is given to the possibility to capitalize on a diverse workforce.  Often that attention, as little as it is, is misguided—the focus being on the public relations value of diversity instead of the value of the work that diverse workers contribute to their organizations.

The Hiring Problem

The hiring problem starts with the gatekeepers, i.e. the human resource professionals who are often trained to weed people out.  This is an exclusive process that can weed diversity out of the workforce of a particular firm.  Legislation has been passed here in the United States to hold businesses and organizations accountable for excluding people with disabilities from their workforce, and yet it continues to happen.  While getting a job is difficult for anyone in the current economic climate, the employment of individuals with disabilities has been far lower than their employability suggests.  Most people with disabilities can work, when given a chance.  Many have to fight to be given that chance—and by ‘chance’ I don’t mean charity, I mean a fair shot at getting past the gatekeepers and into a job they are qualified to do.

The Managing Problem

Once hired, the difficulties for neurodiverse individuals are far from over.  The managing process is often designed with set expectations that, by their nature, work best for a non-existent “average worker.”  Managers can be particularly rigid regarding their management styles; instead of a skill or a process, management style is perceived as a facet of the manager’s personality.  Developing the awareness to manage and capitalize on the unique strengths and weaknesses of the employees you manage requires more effort from you, the manager, than standard management practices do.  However, you also create better results—for yourself, your employees, and your organization.

The Solution: Inclusion

The solution to both the hiring problem and the managing problem is inclusion.  Inclusion is not a passive word.  Inclusion demands action.  It demands you correct exclusive practices and create inclusive ones.  It demands you use language that opens your doors to diversity, instead of closing your minds to other ideas and other methods.  It requires you get beyond the legal mentality, and think inclusively.  While the government tries to carrot-and-stick businesses into hiring diverse workers, the true benefits can only be attained if you use the diversity of your workforce to your benefit—and not just for the PR value.  An open interview process is required and an open organization is required.  You need to have room for people to be “weird” on the job; company-saving out-of-the-box thinking often comes from that “weirdness.”  Neurodiverse individuals don’t have to think out of the box—they are out of the box and often spend their careers trying to think themselves into the box simply to pass, in order to stay employed.

The Neurodiverse Workforce

  • Posted on January 18, 2011 at 7:58 AM

The first proposed chapter for my book, tentatively entitled “Neurodiversity at Work: A Manager’s Guide,” is designed to introduce the concept of neurodiversity in a business-friendly context.

Most of what is written about neurodiversity is from a social justice perspective.  While there are very real reasons for this, a consequence is that information about neurodiversity is not presented in the language most business people speak.  So this first chapter will ground the relevance of the social justice issue to the business world by translating the social justice language to the business language.

What does it mean to be neurologically diverse or neurodiverse?

As used in this book, neurologically diverse and neurodiverse are two different terms.  Understanding both is important to understanding how neurodiversity impacts the workplace.

Neurologically references the structures and mechanisms of the nervous system, including the brain, and the effects the nervous system has on how people experience life.  Diversity references the fact that there is no one neurological state.  We all are neurologically diverse.

Neurodiverse, on the other hand, represents a sense of identity.  Someone is neurodiverse, in this sense, rather than being neurotypical.  Societies tend to prefer a certain set of neurological traits; this set of preferred traits is perceived as neurotypical.  In some societies, including the United States, traits that deviate from this preferred “norm” are perceived as damaged or insufficient.  This creates stigma and an environment of prejudice against anyone who demonstrates neurodiverse traits.  This prejudice can be extreme, such as the prejudice faced by people with so-called low functioning autism, which is considered an extreme deviation from the norm.  This prejudice can also be relatively mild, such as the prejudice faced by people with depression, which is considered a less extreme deviation from the norm.

So, what does it mean to be neurologically diverse?  It’s means you’re a human being.  Humanity is neurologically diverse.  What does it mean to be neurodiverse?  It means you are part of a perceived “undesirable minority” and will face stigma and prejudice as a member of the workforce.  This prejudice and stigma will continue unless managers learn to manage a neurologically diverse workforce or you learn to hide your undesirable differences.  It also means you may carry a label of mental disorder, as your neurotype may have been medicalized due to its undesirability. 

At least an estimated 26.2% of the American adult population could identify as neurodiverse, or one in four adults.  According to the 2004 census, that’s an estimated 57.7 million people in America alone.  This minority is too large and too important to ignore, but the business world often ignores the needs of this population.

What is neurodiversity?

Neurodiversity is about the confluence of two distinct beliefs:

1) People are naturally and normally neurologically different.  Some of these natural, normal differences are labeled “abnormal,” “disorders,” “syndromes,” or other value-laden labels that interferes with our ability to understand the different subsets of human neurology.

2) Human beings are valuable, in all their diversity, in and of themselves.

As such, neurodiversity is a social justice movement that is affiliated with the disability rights arm of the civil rights movement.  Neurodiversity is also strongly tied to autistic advocates, who advocate for acceptance and accommodations for autism, so they can better interact with societies that devalue the autistic ways of being.  As used in this text, neurodiversity is not exclusive to autistics, but encompasses the wide set of neurodiverse individuals who participate in the workforce.  This includes individuals with autism, mood disorders, attention deficit disorders, and other neurotypes that may or may not involve a medical diagnosis.

How does this social concept apply to the business environment?

Consumers are neurologically diverse.  Workers are neurologically diverse.  Business is, by extension, an interaction of neurologically diverse individuals for profit.

Understanding, respecting, and accommodating neurological diversity is an important business survival strategy as the world changes in the face of social pressures from neurodiversity advocates.  Businesses have long struggled with issues stemming from a neurologically diverse workforce, but have yet to come to terms with these issues.

The time is now; because, as pressure mounts, if businesses cannot or will not respond, consumer and legislative pressure will force businesses to respond in ways that suit bureaucratic form rather than the flexible business environment and the needs of your workers.