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.

Autism at the Theatre: On The Spectrum

The Fountain Theatre bills “On the Spectrum” by Ken LaZebnik  as “not your (neuro)typical love story”…. and it certainly isn’t.   It’s more than that…. it’s about a modern-day Romeo and Juliet in love… who both just happen to have autism.    (Of course, during  Shakespeare’s era,  he would have a hard time writing “Romeo and Juliet” with lead autistic characters.   The young lovers would have been institutionalized for having autism or left on the side of the cobblestone streets to beg  for food or money).

“On the Spectrum” is ripe with intensity, complexity, depth and passion, sprinkled with ingenious light-hearted humor.   For instance, Mac (the lead character with Asperger’s Syndrome) prepares to ride the New York Subway to meet for the first time his new boss Iris, who is also  on the spectrum and has trouble communicating verbally (most of the time, she has to use an augmentative communication device with a recorded voice).

Dan Shaked & Virginia Newcomb -- Dan Shaked & Virginia Newcomb - photo by Ed Krieger
Dan Shaked & Virginia Newcomb
                                                                                  –photo by Ed Krieger

His mother Elizabeth is concerned that Iris might do something harmful to him or take advantage of him as Mac is about to walk out the door.   Mac responds sarcastically to his mother saying do you actually think she lures  young men to her apartment by telling them she has autism???   When he arrives at Iris’s apartment, it’s a total mess – he seriously asks her, “Do you have a fear of laundry?” and starts folding her clothes, which she quickly tosses haphazardly back on the couch.  Apparently, she likes to be in control, and her mess helps define her world.

Mac (Dan Shaked) lives with his stressed-out, unemployed, photo editor mother Elizabeth (Jeanie Hackett) in a cramped, West Village, New York apartment.   Although Elizabeth is not autistic like her son, she holds onto the world of her past by hanging a multitude of yak bells from the ceiling she had gotten in Nepal much to the dismay of Mac.  She tells her son that the yak bells remind her of the “best time in her life.”  Even though scientists tell us that people with Asperger’s aren’t supposed to get emotional, Mac feels the sting of his mother’s statement.   Aspies are, after all, human beings too.

“On the Spectrum” is ripe with intensity, complexity, depth and passion…

Even though he has plans to go to law school, Mac finds a job on Craigslist as a computer graphics designer to upgrade the website, “The Other World,” which was created by Iris (Virginia Newcomb).  Ironically, “The Other World” is Iris’s real world, and she rarely leaves her apartment.  At the beginning, Iris and Mac haven’t met in person, and only communicate online (their text was was brilliantly displayed in the background of the set).  When Mac goes to Iris’s apartment to get the money that is owed him and meets her in person for the first time, the young couple fall in love (having gotten to know each other through cyberspace).   While Mac has Asperger’s which causes him to see life in more literal terms, Iris is locked in a world of fantasy spawned by autism.  For instance she refers to her apartment in Queens as her “Crystal Palace” and wears a princess costume.  Mac is her only hope to get her feet on the ground, and he is more than willing to oblige.

According to LaZebnik, “The story is centered around love and finding a place to belong.  Based on my own experiences of family members on the autism spectrum, I wanted to explore the issues confronting young adults with autism.  I am so pleased to be able to bring more awareness to the Los Angeles community.” (The Help Group Newsletter, Spring 2013).

Winner of a 2012 Steinberg/American Theatre Critics Association New Play Award citation and a 2011 Edgerton Foundation New American Play award, “On the Spectrum” shines a powerful light on the obstacles and the successes of people with autism.

OTS5_crop
Jeanie Hackett
      & Dan Shaked
   photo: Ed Krieger

The acting is flawless and realistic; the story is heartfelt; the dialogue is perfect and the scene design is incomparable.   You cannot miss this charming theatrical experience.  Get your tickets now at the Fountain Theatre before it ends April 28, 2013.  You’ll regret it if you miss it.

The Fountain Theatre is located at 5060 Fountain Avenue in Hollywood, California.  Performances are Thursdays, Fridays and Saturdays at 8:00 pm and Sundays at 2:00 pm through April 28th.  For reservations and information, call 323-663-1525 or visit the theatre’s website at www.FountainTheatre.com. (Not Recommended for Young Children).


Debra Clark is anchor of the upcoming Autism World News

Competing Against Ourselves

In a perfect world, teaching compassion in school would be a high cultural priority and people with disabilities would be valued for what they can contribute to the group. They would not be shunned or set aside. But, I think in our culture, at least in school, teaching competition is more highly valued. And leaving out the kid who is different is, well, it’s just what people do to “get ahead” or win.

When I was little, I had an underlying immune problem which, it seems, was part of what was causing my autism. My mom and dad and I took many trips from Northern to Southern California, soccer-team027_2so that I could get my doctor-prescribed IVIG infusions which helped to shift my core health in a positive direction. As I got healthier, I was more able to communicate, learn, and relate.

I missed a lot of school back then. And forming friendships was particularly challenging. That year, I was in an inclusion setting in school. I had started to practice soccer with my first grade classmates after school on a “team” that was loosely formed by the dads. A couple of the boys were already awesome athletes. But, the majority of us were just six-year-old boys running around on a field. Even though I am not naturally drawn to team sports, I loved being out there, kicking the ball. And, sometimes, I kicked it in the wrong direction. Oh, well….

One kid just sat down in the field. Our nickname for him was Ferdinand the Bull, because in the cartoon about Ferdinand the Bull, all Ferdinand wanted to do was to sit in the field and smell the flowers. This boy’s dad was one of the team’s coaches. But, his dad just let his son do his thing. The team seemed to play okay, even if this boy sat it out…in the middle of the field.

One of the times I was off at IVIG (which was every six weeks and which was usually a three-day trip), everything changed. In order to use the field, the City informed the dad-coaches that they had to file papers with the City and formalize the team. They left my name off the team list. When I got back, they told my parents it was “too late” to add me. I couldn’t play or practice soccer with them anymore after school. It didn’t have to do with my ability to kick a ball or run or even about any lack of desire to be part of the group. I wanted to be there. These were my classmates and I was the only one not on the team. “Ferdinand” was included on the team; he didn’t even want to be part of it.

This was the first time I became aware of this kind of dismissive behavior towards children like me.
I felt sad.

This was the first time I became aware of this kind of dismissive behavior towards children like me. I felt sad. I don’t know why they didn’t think it would affect me. Of course, it did. My parents quickly sought out other activities for me for after school, so that I wouldn’t notice. But I did notice, especially when we drove by the field. My mom stopped driving by the field.

Now, I’m older. Because of my experience, my tendency is to welcome and include others. It makes me happy to hear that people like The Rocket Family Chronicles because any show is a team effort and I’m part of this team. I sometimes am the Production Assistant, moving boxes, setting up the camera and the lights. Sometimes, I’m a Cameraman; I’ve shot parts of the episodes. Mostly, of course, I’m acting in front of the camera which I love and is thrilling for me. But, more than this, I love knowing that what I’m doing is inspiring others kids on the Spectrum to know that they can one day be valued members of a team, too.


Sam Rubin plays Rocket on The Rocket Family Chronicles on The Autism Channel.

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…

Fix It in Five

FIX IT IN FIVE  is my brainchild because I work with brains. Let me explain:

For the past ten years I have been invited into homes around the globe. I’ve watched people change and grow healthy with only a few days of time, attention and education. My techniques include play therapy and family dynamics counseling, but I also use neurofeedback. So when I educate and rearrange the behaviors in a home, I do it all the way down to the neuronal behavior of the individual. Yes… I have an edge. And that edge was driving me nuts!

I am a mom of special needs adopted children and neurotypical (sort of) biological children and I know from experience what a God-Send a visitor like me and my brain computer would have been in the early years of raising my kids. And so my need to show the world what is possible grew virtually uncontainable.

Three of my four autistic sons grew into lives of independence. One did not. The one who did not sat through a two hour play– in the front row!—yesterday and he was awesome! At least he was awesome until the play ended and a traditionally educated special-ed teacher came over to talk to him and, with a smile and some kind words, proceeded to treat him like an unpredictable baby about to explode. He complied. And I remembered why I am making Fix It in Five!

My specialty is autism. Autism is on the rise. Autism is grossly mishandled and under-appreciated.

There are culture, language and poverty issues, and sometimes the poverty is mine.

So what is Fix It in Five?  It is me, Lynette Louise aka The Brain Broad, literally putting my money where my mouth is. I am inviting cameras (and hopefully an audience!) to watch me work with families all over the world. I am proving that the bar is too low and more can be, should be, and will be done for people suffering a mental challenge.

In each home I go into there is always a little autism and a little something else (like seizures or Tourettes). There are culture, language and poverty issues, and sometimes the poverty is mine.

I decided to do this with ten thousand (long gone) dollars. People have excitedly stepped forward offering help in a variety of ways, and we have ten episodes to edit highlighting two families so far. The first is in Uganda, the second San Francisco. In the first show my big brain (a fantastic prop the kids love that helps me literally point to problem areas) was crushed, and in the second I lost a tooth. In both we made a life changing difference. If you want to understand and experience the action and lessons inherent in the happenings of those two sentences, tune into episode one. Begin the journey with me as I attempt to FIX IT IN FIVE! We’re not always certain what ‘it’ might be, but there’s much to be gained and learned while it reveals itself!

Autism is not a life sentence, it is a life!


Lynette Louise aka The Brain Broad is the producer and star
of Fix It in Five, exclusively on The Autism Channel

Go With the Flow

When The Autism Channel asked us to create some one-minute pieces for Autism Awareness month, we thought it would be good for Sam (Rocket) to tell one on himself. Sam has always had supersonic ears. But we soon learned that sensitive hearing does not equate to listening. Part of what distracted him was that he was hearing his own heartbeat, the sound of ventilation systems, the sounds of ticking clocks—things you and I would normally filter into the background of our conscious awareness. Sounds like these were as front and center to him as human speech directed at him. He simply was unable to filter any sound from the Surround Sound™ of life.

…his attention to the world of sound…
“the music of the world around him.”

He was steeped in his autistic world and we were trying to reach him. We could see that he was distracted by sounds it seemed we simply couldn’t hear. As his parents, we felt we could find a path to relating to him by following his attention to sound, what he now calls “the music of the world around him.”

Sam Rubin As Child
Sam Rubin reacting to sounds at 3 years 9 months

This lead to some unusual activities, like riding up and down elevators ad nauseum and listening to the mechanical squeaking sounds of them; like finding all manner of trickling, dripping, leaking, splashing, crashing or running water; like learning how to tune in to the faintest whispers of music in various settings like restaurants, malls, or while driving by other cars.

When I think of where Sam was when we started this journey (the autism part) sixteen or seventeen years ago…had I seen this video of his future self, I would never have believed it possible. To watch him confidently stride along, talking about his sensory issues and acknowledging the depth of the impact his parents’ playing together with him had on him (even when we didn’t “get” the game), I am amazed.

Autism, of course, has changed all of us. Aside from making us stronger, it has also taught us the value of playing. When we made this video this weekend, it was just like…dare I say…the “good old days,” playing with Sam, following him down the rabbit hole to a source of sound that lit him up and made the wild world wonderful for him.

But, it’s not over. As we trudged out to the end of the jetty where the Wave Organ was this past weekend, we passed by The San Francisco Yacht Club maintenance building. There, some men were doing something that had to do with sailboat racing. One guy, looking through binoculars at the sailing boats in the bay, yelled, “Prepare for gun!” We were like…huh? …what? As we looked up, he was brandishing a revolver and wearing ear-protection head gear. Sam got it instantly, held his ears, and hopped away like a bunny. I was still taking in the information when the gun went off.

It was almost like one of those jokes the universe plays on you. In the past, Sam would have completely fallen apart with an event like this. But he handled it and moved on. His dad remarked, “How ironic. Here we are going to make this piece about sound and sensitivity and this gun goes off.” Sam laughed. Wow! Who ever could have guessed that he — and we — would come so far.


Sally Park Rubin is the producer of The Rocket Family Chronicles seen on The Autism Channel