The Autism Bookshelf: The H.A.L. Experiment

Family, friends, and teachers have all gotten on me about how I have to write a book. About what, no one ever seems to say, just that I need to. While I’ve written scores of commercials for radio, a PSA for movie theaters, and a few short stories, I still haven’t been able to tackle The Big One. Writing a book has proven to be quite difficult. It’s not something you can just sit down and do — or at least it’s not something I can just sit down and do. So I have nothing but respect for those who did find a way to sit down and do it, especially those who, like me, are on the spectrum.

James Williams, an author with autism, has done just that — twice. Mind you, his first book, Out to Get Jack, was written when the author was only thirteen, and like the writing of most thirteen-year-olds, it’s much too inchoate for me to give it a fair shake in this arena. However, his 2011 outing, The H.A.L. Experiment, is considerably more polished, a piece of young adult science fiction with the potential to inform and entertain young readers both on and off the spectrum.

Book Cover

In The H.A.L. Experiment, Mr. Williams explores that fundamental argument of developmental psychology: that of nature versus nurture. Here, it is applied to children with autism: that is to say, how much autistic behavior is a function of being treated like a person with autism, or, in some instances, like a second-class person? An unscrupulous grade school principal looking for fame arranges to have Lenny, a boy with autism, live with a colleague of hers while being treated as if he does not have autism. At the same time, the family of Hector, a young bully, will be made to treat their son as if he does have autism. Along with Alice, a friend of Lenny’s who acts as something of an intermediary in this scheme, the three children make up the namesake H.A.L. Experiment.

Perhaps unwittingly, the novel’s setting proves to be one of its more interesting aspects. Mr. Williams is a native of the Chicago suburbs, and wisely chose to write what he knows. In his case, it’s the North Shore, a chain of affluent railroad suburbs along the Lake Michigan shoreline, spanning from the Northwestern campus in Evanston up to the old-money horse farms of Lake Forest. (As for how far inland the region can be said to go, most natives will tell you the designation terminates just west of their own lot line. It’s that kind of crowd.) Suburbia as a fictional trope is traditionally all about incubating a sort of painfully average boredom and alienation, but the North Shore is a different beast, one that has been surprisingly well-mined in American fiction.

North Side Chicago Aerial

This is the suburbia of Ordinary People, of Mean Girls, of countless John Hughes films: a place where you’re reminded of success and expectations at every turn, opening up wayward paths into selfishness, social climbing, and despair. In towns where even the elementary school principals have their doctorates, it’s not wholly unreasonable that a school administrator might subject children and families to a highly abusive experiment out of sheer runaway ambition. As a native of Northbrook, Mr. Williams must have sensed the pressure to succeed among his own teachers, compiling and amplifying those traits to create his Dr. Wikedda (a play on Winnetka?), whose experiment as carried out never could have passed the most lenient of ethics boards. The author captures a host of other hyper-local details that form a definite sense of place, from drives down the North Shore’s main artery of Sheridan Road to the region’s vast forest preserves to emotionally distant dads taking the Metra to their jobs on the Board of Trade. As someone who just this summer discovered that a Northbrook forest preserve is bigger on the inside than it looks from the outside, just as a character notes, Mr. Williams’s faithful representation of home, with all its good and bad, made this fellow Chicagolander smile.

“Mr. Williams is a native of the Chicago suburbs, and wisely chose to write what he knows.”

While it’s important to remember that this book is presumably aimed at young readers on the spectrum who may take an interest in the broad-brush speculative nature of the story and in grown-ups being made to look foolish, I still have reservations about the greater narrative of the book. That much of the experiment’s “treating him like an autistic kid” consists of adults being downright abusive is troubling. In my role as a producer with the channel, I have had the opportunity to meet numerous families of autistic children, whether through home video or in person. I’ve been made aware of parents who have treated their autistic children very poorly. I have also met parents who demonstrate preternatural compassion, patience, and dedication to their children. Thankfully, the latter has outnumbered the former. Perhaps this is the unspoken fundamental flaw in the doctor’s experiment, a sort of twist on the Unreliable Narrator trope, but there is no single way to treat a child as if he or she has autism. If there were, it certainly wouldn’t be for parents to belittle and scream at their child for minor transgressions, as the experiment seems to prescribe. The entire approach leads one to wonder how much of this writing was an exercise in catharsis. I can’t help but worry about the ramifications of giving young readers on the spectrum the idea that any raised voice is something so victimizing as “treating me like an autistic kid.” While adults do not have a good showing in this story, the principal characters Hector, Alice, and Lenny are clearly written with the author’s sympathies.

 

While I’m glad that the author completed the accomplishment of writing this book, I would be remiss in not addressing what I feel are a few unavoidable realities about the self-publishing industry, of which The H.A.L. Experiment is a product. I’ve come to suspect that some of us are laboring under the false premise that writing is a solitary and intensely personal pursuit. And it is — when you’re keeping a journal. When you are producing something to be shared with the world, however, there need to be gatekeepers along the way, gatekeepers whom the vanity press does not require. A distinct example of something that never should have made it to press is the use of uppercase letters to denote yelling. In a story like this, tension among characters runs high, and this needs to be communicated. However, while all-caps is understood to mean yelling on the Internet, it’s a convention that does not lend itself to the printed page. Reading line after line of dialogue set in caps is hard on the eyes, and goes beyond evoking narrative tension to simply upsetting the person who is trying to read the book. In the plainest of terms, it’s unprofessional.

I can’t help but worry about the ramifications of giving young readers on the spectrum the idea that any raised voice is something so victimizing as “treating me like an autistic kid.”

I understand the reluctance. I’ve been on both sides in my professional life. I’ve edited and been edited. I’ve proofread and been proofread. I’ve come out of either role feeling hurt, embarrassed, or convinced I must be the only sane person on the planet. I know my counterparts have felt the same way. One of the toughest things an aspiring writer has to do is disabuse oneself of the notion that creativity is to spring forth unimpeded and untouched by any other person, lest the sole artistic vision be compromised. A great way to learn this lesson is to write for radio: it’s simply amazing how much the exact words you chose don’t matter when another person has to read them out loud. I still won’t claim to be perfect in this respect. Even recently, I have, to borrow a phrase from the late David Foster Wallace, “bared my canines” on some flourish that I could not, would not part with. But I know that I can’t leave my writing unchecked. Even on this blog, I benefit from editorial oversight to tell me when I’ve gone off the rails, or when some turn of phrase isn’t nearly as clever as I think it is. And so it is that The H.A.L. Experiment could have used some reining in at select points. At 225 pages, it gets to be rather long for what I presume is the intended audience.

Overall, the book features an interesting story arc and allows the author to demonstrate a keen sense of wordplay, the sort of love for language that we so often see in many on the high-functioning end of the spectrum. If absolutely nothing else, The H.A.L. Experiment will serve as an inspiration to youngsters with a similar love for language that writing a book isn’t an insurmountable task. It’s for that reason that I give the book a recommendation, albeit a cautious one, to parents and school librarians. There’s no question that James Williams has natural writing talent. Now, for the nurturing.

Continue reading “The Autism Bookshelf: The H.A.L. Experiment”

The Autism Bookshelf: Autism and the World According to Matt

BookCover

Reading about autism can be helpful in so many ways. Some titles offer specific forms of advice: how to find employment, how to handle relationships, how to succeed in college. Other books, such as the AAP’s estimable What Every Parent Needs To Know, provide medical expertise across a variety of issues. Still others give us a slice of life from a family affected by the autism spectrum, providing us real anecdotes from real people, the kind that make us laugh, cry, and learn. Autism and the World According to Matt by Liz Becker is one of those books. Across a large collection of small anecdotes, we learn about Ms. Becker’s son Matt and the difficulties he has faced and overcome as a person with autism. Though the journey is long and not without its bumps, Matt is able to graduate from high school and begin the road to self-determination.

Ms. Becker is a gifted storyteller who captures pivotal chapters of Matt’s life with passion and evocative imagery while remaining comfortably readable, avoiding getting lost in the details or losing the reader with a barrage of witty asides. Perhaps the author’s scientific background helps her to balance a colorful narrative with detailed reporting, just as it informs her zeal for finding answers to the questions in Matt’s life. Still, the writing is anything but dispassionate, perhaps best seen in a passage that recounts Matt’s reluctance to move away from his native Virginia – not the federal sprawl of Northern Virginia but the natural splendor of Appalachia, a part of America that’s as worthy of sentimental attachment as any. (Matt is a diehard Virginia Tech fan, too.) Though my local scenery is no comparison, Matt’s desire to remain home reminds me of my own deep-seated attachment to Chicagoland and all the good and bad within. Even as The Autism Channel tempts me with South Florida sun, I don’t feel truly comfortable away from what I know best.

Matt

Staying on this point, it bears noting that Matt and I are roughly the same age. We both grew up in a time before today’s comparative ubiquity of autism awareness. Nonetheless, our experiences were very different. While Matt can be said to have moderate to severe autism, he benefited greatly from a sound intervention strategy. Without a diagnosis and strategy, I spent years floundering academically and socially, appearing instead as someone who just didn’t want to “play the game” or have friends. What Ms. Becker does in Autism and the World According to Matt is further underscore not only the primacy of gaining a diagnosis, but how parents must always be learning, always trying to help. Even though we know more about autism today than we did when Matt and I were kids, it’s still incumbent upon parents to remain active advocates every step of the way. Ms. Becker shows parents just how this is possible, though making clear that it’s never easy.

LizMatt

Regrettably, my copy of the book contained several misspellings and typos that, as someone who reads not only voraciously but professionally, were somewhat arresting. While I’d be remiss in not mentioning these errors, I’ve realized that I may finally have to surrender in two theaters here. First of all, things like “and” for “an” are innocent mistakes, especially in the realm of autism publishing, where truly dangerous lies are allowed to run rampant. Furthermore, the great democratization of publishing is not without its perils, and one of them is that with fewer gates, there are fewer gatekeepers. We may have to accept that copy editing and proofreading hold lesser roles in a New Normal of self-publishing and e-books, a tradeoff for hearing voices that may have gone unheard in a publishing industry without today’s less populist spirit. And let’s be frank: given my own spot on the spectrum, I’m going to be more sensitive to minutiae like this. My experience is not necessarily yours.

Parents and young adults on the spectrum can both enjoy this collection. Good autism literature respects the attention spans and time constraints of its prospective readership and presents itself in a format that allows for short bursts of intense reading: books that can be put down as easily as they can be picked back up, allowing active brains or active lives to interrupt reading sessions without the loss of momentum that has stopped many a dedicated reader from going cover to cover. (Ask my copy of The Brothers Karamazov.) Parents will appreciate Ms. Becker’s devotion not only to her son with autism but to her whole family, and should feel emboldened by the author’s tireless advocacy for her son in a world that too often prefers the path of least resistance. For fellow readers in their twenties, Autism and the World According to Matt is an especially poignant read, allowing us to compare, contrast, and empathize with the book’s subject – an outsize and likable character indeed.

MattGraduation

Perhaps the most striking anecdote in Ms. Becker’s collection involves happening upon her visibly distraught son, complaining that his memory is compromised, and that years of his life have been bulk-erased from his brain. There were many situations I could relate to throughout the book. This was emphatically not one of them, and so it is that I can’t get it out of my head. Ms. Becker suspects a particularly nasty bout of pneumonia, or even a novel means of adaptation whereby Matt is made to forget his most trying challenges as the only way to fully move forward. We never discover what wipes Matt’s neural slate clean. I may not find myself up at night fearing that I too will one day wake up without recollections of my life – I wouldn’t mind some eternal sunshine for a few select years – but I do find myself thinking about how even with remarkable progress, this thing of ours is still a series of mysteries within mysteries, more unknowns than knowns, a puzzle with unlimited solutions or no solution at all, depending on where you’re standing.

Autism Bookshelf: Been There, Done That, Try This!

When you exist on the “high-functioning” end of the autism spectrum, it’s easy to look around you and feel quite a bit less than functional. Watching your peers succeed in the venues where you’ve so often failed — relationships, careers, or simply managing those tiny travails of day-to-day life — can prove to be one of the hardest parts of living on the spectrum. It certainly has been for this reader. But out of that twinge of discomfort comes a desire to make that twinge go away. It isn’t easy: there’s no magic pill, no automatic software update, no closing one’s eyes and blocking it out. u8tb46xw

But with JKP’s latest title, Been There. Done That. Try This!, I can take to heart the accounts of people quite like me who not only acknowledge these obstacles we face together, but also the ways in which we mustn’t make them worse, and ultimately, how we can overcome them. And though taking inventory of myself and the advice of others is harder than squeezing my eyes shut, the dividends are far greater.

Together, these self-advocates offer perspectives, life stories, and advice for not only living, but thriving in an often inhospitable world.

Under the auspices of the venerable Asperger’s expert Dr. Tony Attwood, leading self-advocate Anita Lesko, and “community organizer” Craig Evans comes a full chorus of voices from the autism spectrum: young, old, male, female, and global. Together, these self-advocates offer perspectives, life stories, and advice for not only living, but thriving in an often inhospitable world. Been There. Done That. Try This! addresses every major stressor in the life of a young adult with Asperger’s, from the personal to the interpersonal, from schools to offices, from trying to “pass” to disclosing a diagnosis. Each issue has its essayists’ anecdotal advice matched with Dr. Attwood’s professional insight, rounding out a comprehensive approach to meeting and defeating the challenges we face.

 

The most valuable lesson of Been There. Done That. Try This! is that it in its very title, it reminds us of an important axiom I fear we often lose sight of: that as unique as each one of us is on the spectrum, we’re just as mundane as we are unique, too. You and I are neither the first nor last person to wince under the hum of fluorescent lights, to get lost in our own worlds despite real-world consequences, to sit and wonder if there’s anyone in this world we’ll ever share a life with. So what a relief it is that there are people so expertly assembled here to lend us some firsthand counsel. For no one to have been there and done that would be a uniqueness I’d want no part of. Perhaps successful readers will one day find themselves lending counsel of their own.


Daniel Heinlein is the host of The Autism Channel’s flagship show: I Am Autistic.

The Autism Bookshelf: What Every Parent Needs to Know

 There’s an old episode of The Simpsons wherein the ever-moonlighting Homer becomes a food critic, and to our amusement, the lovable glutton upsets the newspaper’s editor by giving everything he eats a good review. As I complete my eighth book review for The Autism Channel, I’ve gotten this nasty twinge of self-doubt as I’ve paged through my reviews and realized that among them, I haven’t necessarily given any of my subjects a bad review, either.

Why is this? I’m certainly not on any publisher’s payroll. While I do include links to purchase a reviewed book if you would like to do so, it’s more a matter of assisting readers, the logical progression from having recommended the acquisition of a title. If you buy a book I review, I don’t see anything from it. And I’m not afraid of an author emailing me a scathing rundown for not recommending or appreciating his or her work. God knows I’ve committed worse acts in my life than not liking a book.

Luckily, I had my “asked and answered” moment when I looked at my to-read list and remembered that for everything I have chosen to read and share with you, there is also material I’ve elected not to touch. There are a lot of bad ideas about autism out there. For instance, some people would have you believe that it is in the best interests of your child for him or her to ingest bleach. Me, I can’t think of many ideas worse than that. So when presented with anything I suspect may be deleterious to its potential readership, I’ve made my editorial decision simply to pretend it isn’t there. Vitriolic rundowns can be fun, but it’s best not to invite the publicity. So let’s agree instead to concern ourselves only with materials that range from useful to indispensable.

…The content of this book should prove to be a key component in the intervention process, with a wealth of information for its readers across a number of concentrations, from merely understanding autism spectrum disorders to the ways you and your doctor can treat them…

For the parents of a young child with autism, today’s review concerns a book I have indeed deemed indispensable: Autism Spectrum Disorders: What Every Parent Needs To Know, published by the American Academy of Pediatrics and edited by Drs. Alan Rosenblatt and Paul Carbone, the latter having a son on the autism spectrum.

If there’s one thing The Autism Channel’s numerous anchors and guests can agree on, it is the importance of early intervention in the life of a child diagnosed with autism. The content of this book should prove to be a key component in the intervention process, with a wealth of information for its readers across a number of concentrations, from merely understanding autism spectrum disorders to the ways you and your doctor can treat them. The primary narrative, written in a learned but clear voice, is buttressed by insets featuring graphs, charts, and parents’ stories, featuring additional fast facts and helpful anecdotes. While a book published by the American Academy of Pediatrics will hardly encourage its readers to go it alone, Drs. Rosenblatt and Carbone understand the enormous role parents play in their child’s life, and instructs them how they can constructively and lovingly fulfill that role in conjunction with strong pediatric guidance every step of the way.

In a particularly helpful chapter, the editors assist parents and caregivers in negotiating educational services for their child. Take it from me (or better yet, my mom): school systems are often a bureaucratic labyrinth where parents need all the help they can get, and knowing one’s rights with respect to IEPs and IDEA legislation will go a long way in optimizing a child’s educational experience. It isn’t easy. As one featured parent notes, “you have to prepare for a legal fight but hope you don’t have to.” Teachers and administrators, with their time and energy already at a premium, often look for the path of least resistance in their classrooms, even if this means a child on the spectrum slipping through the cracks — cracks which, in many overworked and underfunded school systems, are fast becoming canyons. With that in mind, it is incumbent upon parents to advocate tirelessly for their child and the services to which he or she is entitled, even when that means long IEP meetings and struggles against The System. Without knowledge and advocacy, one cannot expect schools to take the lead.

The editors are cautiously tolerant of some complementary and alternative treatments, while singling out those to be avoided outright. This is where the book truly distinguishes itself as such an invaluable resource. I realize that autism, especially on the lower-functioning end of the spectrum, fills parents with anguish, grief, and desperation. When a child is non-verbal, self-injurious, and markedly delayed in development, his or her autism is not seen the same way it may be on the higher end of the spectrum. It’s seen, rather justifiably so, as something to be cured, a shell for a child to be brought out from, and it’s this line of thinking that leads parents to try anything they can for their child. It’s also understandable that amid their frustration, parents will grow distrustful of their pediatricians and of mainstream medicine, turning to therapies that promise the world but don’t deliver, while adding even greater expenses to cash-strapped households.

The book, however, asks for patience and discretion, warning parents to avoid treatments that have not been proven under rigorous clinical trials. The gluten-free/casein-free diet, for instance, is without available scientific proof, and with the risk of vitamin deficiencies and osteoporosis due to eliminating dairy products, parents are advised to proceed, if they must, with caution. While the GFCF diet is relatively innocuous, other treatments named can, in fact, severely harm children, yielding side effects such as immunosuppression, dermatitis, seizures, and — in the case of heavy metal chelation — death. The book names antivirals, immunoglobulin, hyperbaric oxygen chambers, secretin therapy, and the aforementioned chelation among numerous treatments that are costly, unproven, and dangerous.

That being said, Drs. Rosenblatt and Carbone do not dismiss all complementary and alternative medicine. Probiotics (the healthy bacteria in yogurt) and multivitamin supplements are named as aiding GI issues and accounting for the selective (and often omissive) diets of many kids on the spectrum. Of course, relative to some of the snake oils out there, a good old-fashioned healthy diet is hardly all that alternative. In my experience — strictly anecdotal, of course — I’ve noticed that when I am eating well, taking vitamins, exercising regularly, and averaging seven hours of sleep a night (emphasis on night), I tend to feel less anxious, less depressed, and more engaged with my environment, as if some sludge in my brain has been powerwashed out. I certainly wouldn’t call it “curing my autism,” but I do feel my functioning is somewhat less impaired when I ascribe to these guidelines. Again, though, there’s nothing empirical here. I look at it as kind of a healthy-lifestyle Pascal’s Wager: if it works, great! If it doesn’t, I’m just doing something I ought to have been doing for its own sake anyway. And so perhaps your child, with pediatric guidance, can also benefit from a well-managed and properly supplemented diet, whether in general or with respect to symptoms of ASDs.

…If you are the parent of a young child who has or may have autism, Autism Spectrum Disorders: What Every Parent Needs To Know will quickly prove invaluable…

One final chapter worth noting concerns adolescence and the road to adulthood. Children aren’t children forever, and there will come a time when they are no longer under the aegis of the school system and its support programs. Parents must continue to help their child transition into adulthood: finding his or her place in the community, pursuing further education, and gaining employment. Some will grow up to live independent lives, while others will benefit from more supportive environments, and this chapter helps parents plan for a number of possibilities. Before that point, of course, the editors address the matters of changing bodies, developing self-advocacy, and honing daily living skills.

If you are the parent of a young child who has or may have autism, Autism Spectrum Disorders: What Every Parent Needs To Know will quickly prove invaluable. A lot of people have a lot to say about autism these days. A cursory search of Amazon, or an aisle at your local Barnes & Noble, or even the very existence of The Autism Channel should prove that. But in this loud, crowded, and ever-growing marketplace, not everyone is speaking with the personal and professional experience of this book’s co-editors, to say nothing of the peer review and backing of an organization counting over 60,000 pediatricians. The loudest voices aren’t always the right voices, and it can be a struggle to find those right voices in the din. I suppose that’s why we have book reviewers. More importantly, that’s why we have doctors.

The Autism Bookshelf: Chicken Soup

 I consider myself a fairly voracious reader, and without getting into too much snobbish, pseudo-Victorian yearning for the discreet joys of staying home with a book and a nice cup of tea, let it suffice to say that I’m proud to do so. I was fortunate to grow up in a household that made sure I read, and to spend my formative years in a suburb with one of the largest public libraries in greater Chicago. It’s as good a recipe for a lifetime of literacy as you’ll find. As a kid, I loved just about any young adult fiction I could get my hands on, Judy Blume being a favorite. I sought out many books about flags and languages of foreign nations, with any holes in my nonfiction reading filled by my mom’s old 1966 World Book Encyclopedia, which over a childhood I more or less read A to Z. Not bad, though I will also admit to having had a sizable weakness for periodicals about video games. Kids are kids.

 

These days, I pretty well spray to all fields, having amassed a solid bedrock of American and European literature, plus nonfiction on everything from history, psychology, and music, to baseball analytics, etymologies, and the civil engineering of New York (Robert Caro’s The Power Broker — an 1,100-page behemoth which I’d love to recommend if you have an interest in politics and plan to take, say, a trans-oceanic flight). All this and yes, of course, my growing shelf of books on autism, many of which I like to share with you here.

 

What I’ve noticed in recent months is that I’m just not reading novels the way I used to. I’m sure it’s a number of factors: as you get older, your preferences crystallize, and you don’t want to try something new in case you don’t like it. A fair deal of my favorite authors just aren’t writing anymore. But most of all, I think it’s a matter of time. Great novels require commitment. A website called “Infinite Summer” helps readers tackle David Foster Wallace’s masterpiece Infinite Jest with a daily reading guide that asks for just fifteen pages a day…for 92 days. And with I Am Autistic episodes to prepare and record, my copywriting job, and a teetering tower of books to review here, I just can’t commit right now. It’s not you, novel, it’s me.

 

What I am reading as of late are essays and short stories. Though they never get the same acclaim as The Novel, I’d rather enjoy a few great essays and short stories than read some airport novel just to say I finished a book. At the moment, I’m enjoying Nine Stories, a short story anthology largely centered around J.D. Salinger’s precocious Glass family, the tragic fall of the brilliant-but-flawed family being a favorite theme of mine in literature and film (Infinite Jest, The Magnificent Ambersons, The Royal Tenenbaums).

I’m also reading Chicken Soup for the Soul: Raising Kids on the Spectrum. If I think I don’t have the time to sit and read, I can’t imagine what it’s like for the parent of a child with autism. Fortunately, here is a book that allows parents who are pressed for time and energy to steal a few moments for some relaxing, feel-good reading, for as much or as little time as they have.

 

The Chicken Soup format should be no stranger to any of us at this juncture: a collection of short pieces that serve to soothe, hearten, uplift, and motivate the reader, usually one who is going through some time of adversity: cancer survivors, expectant mothers, addiction recoverers, and veterans of wars, to name a few. I had Chicken Soup for the Teenage Soul in middle school, adolescence being a great time of adversity indeed. The autism-spectrum iteration of the popular franchise follows form, with 101 short — generally just two to five pages — essays and anecdotes about life as a parent touched by autism.

…In the spirit of full disclosure, I will note that amidst the featured authors are Autism Channel personalities, whom we’re proud to highlight…

The book is organized into rough categories of dealing with the label of autism, social interactions, humor, challenges, and family, among others. Reading entire categories at once, or reading the book cover to cover, however, is hardly required, and can even detract from the efficacy of the anecdotes. The sixth or seventh story in the same vein can find itself without the punch of the first or second, and so the best course for general reading is to skip around the 101, sampling a little bit of each. Of course, if you’re approaching the book as a direct response to an event — for instance, a rough day at the grocery store — perhaps you may wish to load up on stories about public interactions. Or perhaps after a day that has been trying in many ways, all you want is to find something to laugh about. You’ll find that here, like the story of a camper with autism who, after compiling a collection of photos, takes the term “disposable camera” literally.

 

In the spirit of full disclosure, I will note that amidst the featured authors are Autism Channel personalities, whom we’re proud to highlight. Our Kathleen Leopold of The Blog Ladies shares a family conversation about autism in a household where some are on the spectrum and others are not, where one child wonders if dogs have autism. (My facetious verdict: they might, but cats definitely do.) And Mary Beth Marsden of Real Look Autism documents her efforts to produce a show about the autism spectrum, which she ultimately accomplished.

 

Chicken Soup for the Soul: Raising Kids on the Spectrum is a book that, like many of the anthologies I’ve read, is largely what you make of it. You may choose to zero in on one category of stories, or you may eventually read them all. There will be stories you take from it that you’ll cherish, and there will be stories that are duds. And the duds for you may be cherished by someone else. What it will do is have you engaged in the act of reading a tangible book, something that you may not find yourself doing enough with the considerable time constraints placed on you. If you’ve forgotten how enjoyable it can feel to be immersed in a book, whether it’s a cover-to-cover page-turner or one where you skip from story to story, Chicken Soup for the Soul: Raising Kids on the Spectrum will, if nothing else, restore that good feeling of time well spent. And if you do want to accompany your reading with the proverbial nice cup of tea, I can recommend a terrific Darjeeling for a late afternoon.

 

If you are so inclined, you may purchase a copy of the book here.


Daniel Heinlein is the host of I Am Autistic, seen exclusively on The Autism Channel.

The Autism Bookshelf: The Autistic Brain

 Like most of the book-reading public, it’s not often I get to discuss a book with its author. In my case, I don’t get out to book signings all that much, and even if I did, it’s hardly polite to hijack the line so I can yammer on forever. There’s also the fact that most of my favorite authors are retired or dead. Death is often a slight encumbrance to substantive discussion.

 

I was fortunate to make an exception last May, when on a trip to the Flying High With Autism conference in Pensacola, I got to meet the author of a book I had just finished. The book is The Autistic Brain, a heady tome that delves into the hard neurological science of autism, exploring brain imaging and genetics in an effort to further explain the many enigmas of autism. The author is Temple Grandin.

 

You understand, I’m sure, that Dr. Grandin has become the most famous leading voice of the autism community, and so not only meeting but having the opportunity to have a thorough discussion with her was quite an honor indeed. Having been featured in the title essay of Oliver Sacks’s idiosyncratic anthology An Anthropologist on Mars, she rose to fame with numerous bestsellers such as Thinking in Pictures, not to mention an eponymous biopic produced by Home Box Office. Her primacy in the community is such that it almost seems as if no essay or presentation can go without mentioning her, whether a further exploration of her work or just a quick tip of the hat to show that the author is indeed conversant with our most famous personage.

 

So when I was able to interview Dr. Grandin for a very special episode of I Am Autistic, I was able to gain insight into The Autistic Brain that I certainly would not have had otherwise. I became privy to some powerful feelings that weren’t communicated quite as strongly in the book’s pages. I discovered that things I thought I had right, I had wrong — surely the kind of face-to-face revelation a high school junior wishes he or she could have had after just missing the mark on an analysis of The Great Gatsby. It’s a conversation you can see for yourself on the channel. I can only hope that I didn’t appear too starstruck.

 

In the book, Dr. Grandin, in concert with author Richard Panek, explores autism and the fields of neurology and genetics in a way that the non-scholars among us can process and appreciate. Coincidentally, autism literature is a spectrum unto itself, ranging from warm-and-fuzzy personal tales to scholarly articles that will make a layperson’s eyes glaze over. As a layperson, I can attest. So it’s a matter of striking a delicate balance when one tries to bring the scientific to the masses, but fortunately, Grandin and Panek are able to do so, owing to a preference for plain speech and the use of bulletpoints and tables to break up and further simplify information for consumption.

 

An early chapter of the book discusses magnetic resonance imaging, and how the parts of the brain can elucidate the way we think and experience the world. For instance, Dr. Grandin discovered through her MRI that the left ventricle of her brain extends into her parietal cortex, possibly compromising her short-term memory. The amygdala, which is responsible for fear and aggression, is also larger in her brain than in the average brain. This, she postulates, could explain her lifelong anxiety, colorfully referring to herself and other similarly high-strung people with autism as a “big exposed nerve.” As someone who is indeed prone to high levels of anxiety (as well as depression, counterintuitive as it may sound), I appreciate this metaphor, which really is a great way of putting it. In my conversation with Dr. Grandin on I Am Autistic, I mused that it would really be something if we could make MRIs available to a large number of people on the spectrum, so we could really get down to a biological basis for why we are the way they are. She demurred, saying that all her MRI did for her was confirm things she already suspected or knew. I’d still volunteer, at any rate.

 

After the book explores genetic sequences and sensory processing, Grandin and Panek devote time to identifying and capitalizing upon the strengths of those with autistic brains. With the underemployment and unemployment levels of the autism-spectrum community, this is pertinent material. As many of us know, Dr. Grandin rose to prominence with her groundbreaking research in animal science, drafting a slaughterhouse that used circuitous pathways to reduce anxiety in cattle. This was something she did with her preternatural ability to think in pictures. But as I learned from the book and from my discussion, not all of us think in pictures — and it doesn’t mean we don’t have autism. Some of us think in patterns or systems. Others think in words and facts. If you haven’t guessed, I’m a word/fact person. Thinking in pictures? I can’t even assemble a tent.

 

The book discusses how autism informs these ways of seeing the world, and then identifies optimal occupations for each group. Picture thinkers are well-suited to jobs in everything from welding and HVAC to graphic design, to name a few. Pattern thinkers flourish in programming, engineering, or actuarial science. Word/fact thinkers may have futures in legal research, library science, and copy editing.

 

In the black and white of ink and paper, I found this to be a useful component of a useful book. It wasn’t until my interview with the author that I realized it was its key. With arguably the most passion and consternation of the evening’s chat, feelings I never could have picked up to such extents in my reading, Dr. Grandin lamented to me that too many kids on the spectrum were whiling away their hours merely playing video games when they could be developing them. People were pitying themselves for their shortcomings and paying no attention to their strengths. She repeated, her voice rising and quavering, that there were jobs out there for people on the spectrum. It was just a matter of getting the education for them and setting out to procure them.

 

Indeed, this section, taking the science of what goes on in our brains and applying it to our worlds, is the real core of The Autistic Brain. Provided you can invest the requisite time in a book that, despite the aforementioned plain English, still falls well short of breezy, it’s one I can wholeheartedly recommend, especially to parents with an adolescent on the spectrum getting ready to face the world in earnest. Just as the book takes a wealth of scientific information on neurology and genetics and arranges it into something all of us can read and use, people with autism need to take everything inside their own brains and share their gifts with the world, not only enriching a workplace or society but taking great steps toward self-sufficiency. After concluding my interview with Dr. Grandin and going through the subsequent postmortem chitchat with our assembled guests, she headed out the door, but not before turning back to me.

 

“What did you say your other job was?”

 

“Copywriter,” I quickly replied.

 

She nodded. “Good. That’s good for you,” and the door shut.

 

Right down to the very last moment of our interaction, it was all about jobs. You’ll come away from The Autistic Brain with a refresher or new knowledge on parts of the brain, or some insight on sensory processing, but you should find, as I did with a little help from the person who would know best, that this isn’t a book about having an autistic brain. It’s a book about using it.

 

If you are so inclined, you may purchase a copy of the book here.


Daniel Heinlein is the host of I Am Autistic, seen exclusively on The Autism Channel.

The Autism Bookshelf: Asperkids

 There are two impressions that one can get from the common representations of Asperger’s syndrome. The first is that it’s a bit of a boys’ club. More boys than girls are diagnosed with an autism-spectrum disorder, and Simon Baron-Cohen postulated that high-functioning autism is but an “extreme male brain,” taking traditionally male traits of logic, systematic organization, and stoicism, and extrapolating them to their natural conclusions. I don’t like this. I am high-functioning, yet prone to highly illogical decisions and poor organization, to say nothing of my frequent emotional outbursts. Other than perhaps some deep-seated, reptilian-brain desire to spend inordinate time sitting on a couch and watching sports, I’ve never thought of my brain as being all that male, let alone extremely so. Oh, well; when you’ve met one of us, you’ve met one of us.

 

The second is that as far as boys’ clubs go, it’s not even much of a club. If we were a club, we’d show up to meetings late or not at all, forget to pay our dues, and we’d never figure out what to have for dinner, having failed to make any sort of compromise with one another. And I’m sure many people with Asperger’s, in their more self-effacing moments, would just deploy the famous old Groucho line about clubs and their membership standards. Having no paucity of self-effacing moments in my life, I’ve used it a time or two myself.

 

So how nice it is, then, to be reminded that the autism spectrum does not discriminate, and that males and females alike are eligible for participation, such as it is. Jennifer Cook O’Toole, mother of three and overseer of a growing franchise of books, introduces us to her family where everyone is on the spectrum in Asperkids.

 

I first read Ms. O’Toole’s work — albeit out of order — several months ago, in The Asperkid’s Secret Book of Social Rules, this flagship book’s followup that details how young adults can find their way in a world where they don’t always fit in. I was familiar with the author’s prose style, which I described as “friendly but authoritative” as she helped her readers navigate. In Asperkids, we are treated to a history of the author’s road to her own diagnosis and her efforts to homeschool her three children, all of whom have Asperger’s, often in addition to other challenges, like ADHD.

 

Homeschooling your own children may not be reasonable. And modern homeschooling, due to its often fundamentalist Christian implications, has gotten a bad name in America these days. But even if your children attend mainstream schools, education isn’t limited to school grounds. The blueprints for activities detailed in Asperkids, if not applicable to a homeschool setting, will be perfect for some casual summer enrichment, taking your children’s special interests, building them up further, and dovetailing them into more comprehensive and global studies of core subjects. Chances are your child already has quite the zeal for learning, and will appreciate a summer curriculum tailored to his or her interests and pace. Ms. O’Toole approaches her own children as someone with a background in special education, giving her the requisite appreciation for exceptional minds and exceptional ways of learning. She also, of course, approaches her children as someone who is on the autism spectrum as well. From a daughter’s special interest in Greek mythology, for instance (one of my old favorites, too), Ms. O’Toole teaches not just history, but geography, physics, geometry, music, and even the classical languages of Greek and Latin — the knowledge of which go a long way in improving our strength with our native English. While I was able to get an A+ on a family tree of the Greek gods in sixth grade, I never thought to extrapolate my studies into the construction of the Parthenon, or the Greek etymologies of everyday words. Alas, we can’t teach ourselves everything.

 

One topic to which the book devotes some much-needed attention is that old bogeyman of mathematics. In a chapter entitled “All Aspies Are from Missouri,” named in tribute to their “Show-Me State” moniker, Ms. O’Toole talks about the difficulty of applying the abstractions of math to the concrete minds of kids with Asperger’s. I can empathize. While I blazed through English and history courses, I repeatedly found myself tripped up by math — with the not insignificant exception of geometry. (That so many kids on the spectrum struggle with math should really throw our extreme maleness into question: clearly we’re not all budding engineers.) I could memorize facts, learn languages, but when it came to algebra, there was so much I couldn’t begin to process. I still don’t know what a matrix is, or how to multiply one against another. That math teachers couldn’t “show me” didn’t help. While the book doesn’t progress to the perils of high school algebra, it does offer an array of tips to make math not only something tangible, but something applicable, answering the refrain that eats away at every person who has ever taught a math class: “When will we use this in real life?”

 

Beyond the pedagogical content is some warm advice on how to handle the challenges of being a parent of a child or children on the spectrum. Ms. O’Toole talks about comfort zones, particularly how we will quite often find ourselves beyond them. Meltdowns, teacher conferences, and difficult discussions are not anyone’s idea of comfortable, but they are unavoidable in this life, and the author hopes to assist her readers in handling these situations with confidence, bravery, and, when applicable, a sense of humor.

 

Asperkids is a touching, informative book and a valuable resource for the family touched by the autism spectrum, whether that’s one child, every child, or every child and a parent or two. More than anything, as someone without children of my own to educate, Asperkids is simply a book that makes me happy. I love learning, and think fondly upon my autodidatic excursions, while lamenting the shortfalls that could have been improved with more malleable instruction and, let’s be honest, at times a more receptive learner. While there are certain lost expectations that every parent of a child on the spectrum will have to grieve, the life of raising that child will still indeed be rife with enriching and meaningful experiences.

 

If you are so inclined, you may purchase a copy of the book here.


Daniel Heinlein is the host of I Am Autistic, seen exclusively on The Autism Channel.

Autism on Ice

When I’m not talking about the autism spectrum, there’s a very good chance that I’m talking about hockey. My hometown Chicago Blackhawks get most of my attention, but I’ll keep a roving eye on most everyone. I’m a diehard fan — as most hockey fans are; it’s really the sort of thing where you either love it or you don’t — and I’ve long suspected the overlap between hockey fandom and the autism spectrum is not insignificant. I also suspect the NHL has an inkling, as their proposals to prospective sponsors are built on trumpeting an audience that is educated, obsessively devoted, and tech-savvy. Not that that sounds like anyone we know.

 

It could be that ice hockey, with its blazing speed and use-the-whole-buffalo style of roster management, is a spectator sport that both demands and rewards a singular, razor-sharp focus in ways that others don’t. The hyper-interrupted telecasts of professional football are really just a delivery device for beer and truck commercials, and a baseball game, though loaded with statistics to digest and memorize, can certainly test one’s attention span at times. They end up being background noise more than anything else. But when I watch a hockey game, I’m glued to the screen, muttering to myself about line matchups, ice time, and any other data I feel I need to process in order to enjoy a game.

It wasn’t until the throes of the lockout that I learned there was a connection to autism right there at ice level.

Maybe it’s that the NHL my generation grew up with appealed to our inner mapgeeks with such idiosyncratic locales as Hartford, Long Island, Edmonton, and Québec City. Half the time, you needed an atlas just to figure out where your team was headed on a given night (or video game simulation), and I’ve never been one to put down a book of maps once I have one in my hands. I won my middle school’s geography bee twice, largely on the strength of knowing Canada and Europe, the two cradles of ice hockey. I don’t think many other seventh-graders knew that Canada had just partitioned the Northwest Territories to create the Inuit-governed territory of Nunavut, or that the capital of the then-somewhat-new republic of Slovakia was Bratislava (and the home of Peter Stastny, longtime all-star for the parti-mais-n’oublié-pas Québec Nordiques). My peers were pretty impressed with my first win, but I didn’t get the same adulation when I won again in eighth grade. No one likes a repeat champion, I suppose, whether in sports or geography bees.

 

Or maybe it’s just the outsider chic that comes with following the clear No. 4 of our four major sports (and one could reasonably argue that west of Minnesota and south of Virginia, it’s not even fourth). There are, after all, great social pressures among boys of a certain age to Like Sports, and when the cool kids who love football won’t have you around at recess, your best bet is the one that can’t really be replicated on the playground. Football bewildered me as a kid, and my hoops-shooting leaves a lot to be desired to this day. I was always a decent floor hockey player in gym class, though, since it required little more than some basic north-south movement and the discipline not to hit anyone in the mouth with a stick.

 

At any rate, here I am, having had spirited arguments for years about everything from defensive schemes to sweater designs among people an awful lot like myself. It’s a fine enough way to get through our bleak winters. Unfortunately, it almost didn’t get us through this winter, as a work stoppage cancelled half of the NHL’s season. The league’s ownership decided that in spite of record-setting revenues, they were still paying their players too much, so they simply refused to stage any games until the players’ union accepted massive cuts in salary, pension, and benefits. Casual observers routinely mistook this for a strike, the 1994 baseball strike being most people’s reference point for sports labor strife, but it’s an altogether different dynamic when it’s management turning labor away. Either way, this wonderful world of labor law is not particularly easy to explain, especially not for a dad who has to tell his son with autism why they won’t be watching games together in their usual seats along the boards of the Blackhawks’ rink.

 

Watching the Hawks’ home games in recent years, I had noticed a collection of stuffed animals along a corner of the boards. It wasn’t until the throes of the lockout that I learned there was a connection to autism right there at ice level. As his father notes, “Michael’s favorite moments of the game are when his stuffed animals go flying when the players crash into the boards in front of us.” I wouldn’t be surprised if some players, always with an eye toward pleasing the fans in this recent renaissance of Chicago hockey, made sure to deliver their hardest hits to the opposition right where they’d make someone the happiest.

 

Throughout autumn and early winter, I watched these labor negotiations publicly transpire, and without being able to stand in awe of picture-perfect dekes, breakaways, and one-timers, I instead found myself in awe of the public solidarity and commitment put forth from a bunch of guys who, in the best of times, would be skating around trying to smash one another into a plexiglass wall. The question I asked myself, as someone involved in the world of autism, was “where’s our united front?” It’s quite the bugbear of mine that so often, our passion and devotion for bettering the quality of life for people touched by autism is tripped up by misunderstandings, miscommunications, and differences of opinion that get in the way of effective mobilization and organization. We all have different hypotheses, approaches, and philosophies with regard to the autism spectrum, and these are debates that should be welcomed and fostered. But when the stakes are highest, we need one strong voice on behalf of the community in what has become a crowd of strong voices wanting and needing to be heard. We may be on different teams, so to speak, but at the end of the day, we’re all in this together.

 

Today is the first day of the Stanley Cup Final, to be contested this year between the Boston Bruins and my — and Michael Romano’s — Blackhawks. It should be a close one between two teams returning from championships two and three years ago, respectively, but with the series aligning with a busy work week for me, I’m perhaps a little more disengaged from this year’s Final than I might have cared to admit: I’ll miss games due to taping and travel, and my superstitious playoff beard had to go before I could even think of being on camera again. But if not for my own sake, I do hope that after all this difficult waiting, I’ll get to see Michael’s array of stuffed animals flying off the dashers as a well-placed check sets up a game-winning, series-winning, Cup-winning goal.


Daniel Heinlein is the host of The Autism Channel’s flagship show I Am Autistic and an inveterate hockey fan.

The Autism Bookshelf: Finding Your Own Way to Grieve

A lot of people I know grew up with grandparents who were almost abstractions. No longer needing to avail themselves of job opportunities and leafy suburbs in chilly Chicagoland, they retired to Phoenix or Tampa-St. Petersburg and left their grown children back home. Sometimes their families would visit them, usually in March so they could twin the trip with a spring training game, but living a thousand miles apart, it was difficult for their grandchildren to bond with them.

How lucky I was, then, to have spent a great deal of time with my maternal grandparents, who ran radio stations in Chicago and Autism Bookshelf: Finding Own Way To GrieveMilwaukee, always too engaged in their work and their family to scuttle off to a condo in Boca Raton. Living just down the road, theirs was my home away from home. It was on their watch that some of my gifts started to show themselves: my reading and memorization at such an early age almost became a parlor trick. “What would he like?”, the waitress would ask my grandpa, motioning to the toddler with bread crumbs on his face. “Ask him,” he’d reply, and I would do just that, politely reading my choice from the menu. (It was usually just chicken tenders. I wasn’t a very adventurous diner yet.) I’d complete the evening’s entertainment by reading the names of the credit cards in his wallet, as if I even knew what revolving credit was or how it worked. I still might not.

It was with their keen eye and their generosity that for the first three years of my education, I was fortunate enough to attend a school for gifted children. I hadn’t been diagnosed as being on the spectrum yet, and I have a feeling that some of my eccentric classmates would later encounter the same discovery that I did. Still, we flourished there, under well-meaning teachers and administrators who I’ve come to suspect knew more about Asperger’s syndrome than most people did — perhaps more than they knew they knew. The local public school district fell short of diligent upkeep on the disused grade school building we occupied, and elected to raze it, evicting us.

Grieving is hard enough for anyone… As is so often the case, these concerns are magnified for a person on the autism spectrum.

Though I couldn’t continue there, my grandparents continued to make sure I had outlets for learning and creativity beyond what the average child enjoyed. When my grandfather bought another radio station in Wisconsin, my family moved up to help him run it, and I was allowed to learn radio hands-on, running around the studios after hours, doing mock radio shows with myself and my imaginary sidekicks. I still have the airchecks somewhere. I am never going to play them back.

Continue reading Finding Your Own Way to Grieve…

The Autism Bookshelf: How Can I Help?

Hillary Clinton’s famous remark that “it takes a village to raise a child” triggered what’s become an ongoing national dialogue of sorts: debating the importance of people, communities, and institutions beyond the traditional household in helping a child to grow. By now, most families would probably agree that the truth lies somewhere in the middle: no two parents can reasonably be 100-percent responsible for a child’s upbringing, and on the other end of the continuum, even the kibbutzim stopped making kids live apart from their parents.

But the debate is an especially poignant one for families touched by autism. I would suppose that if asked whether it’s about the family or something much larger, their answer might be that the truth lies not in the middle, but somehow both extremes at once. Raising a child on the spectrum can require two devoted parents, one of whom is singularly devoted to caring for the child. It can also require a far-ranging support system of friends, relatives, medical professionals, and educators. It takes a family, a village, and everything in between. The demands—and the stakes—are that high.

Ann Palmer’s book, A Friend’s and Relative’s Guide to Supporting the Family with Autism takes a bold first step in integrating layers of support around the family touched by autism, inviting grandparents, relatives, co-workers, neighbors, and close friends to play a pivotal role in a child’s growth, whether through direct involvement or through greater understanding for the parents’ journey.

The book begins with an introduction to the autism spectrum and a brief history of how we got to this point, from the early work of Drs. Kanner and Asperger to the debunking of icy mothers or measles shots as culprits. Sure, this is old hat for the experienced parent or caregiver, but this is not a book for the experienced parent or caregiver. Ms. Palmer does us all a great service by explaining to the unacquainted what autism isn’t: we are not Rain Man, we do have emotions and feelings, and yes, we can even be successful.

The book stresses the stress that raising a child with autism can put on a marriage. As Ms. Palmer explains, it’s not as simple as parents being busier. The sleep deprivation that attends child care on the spectrum can lead to hormonal imbalances, bringing about depression and irritability in people who are already overextending themselves. And that’s before we even make it out the door in the morning, if we do at all: a mother may have to quit her job to stay at home, while her husband takes on a part-time job to supplementBookShelf240 the household’s income. And with the costs associated with healthcare and support services, they’ll need every cent. If you aren’t living it already, you can see how hard it can get for two people who love each other to stay devoted to themselves while remaining devoted to a child who relies so extraordinarily on their love and hard work.

This is where the book shines, as it instructs and encourages relatives and friends to give what they can, whether it’s as simple as being a good listener for a venting mom, or as involved as providing respite care so that a child’s parents can be at their best for their family and themselves. As any good guide should, it matches what to do with what not to do. Not lost on Ms. Palmer is how conversations can be minefields with a spectrum family. We’ve all been told somewhere along the line to avoid matters of politics and religion. The latter is especially true here. The book specifically advises the reader to tread lightly on matters of faith. “God chose you to have a special child” may seem touching and encouraging until that mother, pushed to her wits’ end, questioning her faith as it is, sputters back that maybe he should have chosen someone else instead.

A Friend’s and Relative’s Guide to Supporting the Family with Autism takes a bold first step in integrating layers of support around the family touched by autism

From cover to cover, the book is full of heartfelt and useful advice. That being said, some of the advice may fall outside the book’s intended purview. On several occasions, the author speaks directly to issues facing “your child” or “your partner,” which wouldn’t apply to the friends and relatives in the title. Perhaps the intention is for parents to give the book a read before handing it off to a grandparent, neighbor, or another involved party. My only fear is that these passages for the parents themselves will fail to resonate with readers outside the household, and leave them liable to skimming.

And this is not a book to be skimmed. Ms. Palmer incorporates cited selections from relevant autism literature, as well as personal anecdotes from friends who, like her, have raised children on the spectrum. As a dedicated skimmer myself, I have a tendency to skip those block quotations set apart from the main narrative. Do not do that here! You would miss a wealth of terrific stories and insights.

A Friend’s and Relative’s Guide to Supporting the Family with Autism is subtitled “How Can I Help?” The first step, of course, would be the reading of this book and taking its lessons to heart. If you’re watching our channel, chances are that you have a maxed-out support system within the household, and a pretty solid circle of friends and relatives who are of invaluable assistance. Nevertheless, I’m sure you can think of people whom you’d like to inform or involve, or perhaps lend some guidance to a family member with good intentions. This is a book that can make your “village” of child development bigger and stronger. The question, then: is the book the gift, or is the gift the good feeling that will come with constructively volunteering one’s time and energy to people who need it so badly? Once again, it really is better to give.

 If you are so inclined, you may purchase a copy of the book here.


Daniel Heinlein is the host of I Am Autistic, the flagship show on The Autism Channel.