Filters, autism, and Rosanne Barr

I have a t-shirt that says “you know that little thing inside your head that keeps you from saying things you shouldn’t? well, I don’t have one of those”. A lot of people on the spectrum don’t have filters, and that’s why some people have jobs as autism coaches and why there are so many books about social skills. Autistics aren’t, as a group, people who automatically have a talent for social skills or fitting in or saying the right thing at the right time. Everybody has a story about a time they wish they hadn’t said something, but people on the spectrum have a lot of those kinds of stories. This is what happens when nature doesn’t install a filter in your brain: There’s a direct connection between the stupid part of your body and your mouth. Today’s news provides a dramatic example of what can happen when you don’t have a good social filter.

Roseanne Barr went on Twitter early Monday morning and blew up her career.

The good news is that Ms. Barr doesn’t appear to hate one group of people; based on her tweets, she can find something to hate about just about everybody. The news has described her as being racist, Anti-Semitic, a bigot, and against anyone who differs from her (and perhaps what she would find worst of all – not funny). Some of the stars had a lot to say about her. Emma Kenney, who played her granddaughter on the show, said she was hurt, embarrassed, and disappointed, calling Barr’s racist comments distasteful and inexcusable, stating that “bullies will never win.” [Ms. Kenney is multi racial.] Sara Gilbert tweeted that Barr’s comments were “abhorrent and do not reflect the beliefs of our cast and crew or anyone associated with our show”. She was disappointed with Roseanne’s actions and adds that it’s sad and difficult for all of them because they created a show they believed in and were proud of and one that audiences loved-separate and apart from the opinions of a single cast member.

What Roseanne did is detestable and unforgivable. The media made her famous for all of this for years, the show made it funny, and she just assumed she could get away with it. Numerous other celebrities have expressed their feelings about all of this – and no one defends her. It must be very lonely to be Roseanne Barr right now.
The tweet was a joke that went too far and got out of hand as a result; there’s a lesson here because people on the spectrum don’t always know if what’s funny to them is funny to everyone else. There is a simple solution to this – when you’re in doubt, check with someone who isn’t on the spectrum. The best advice I can give here is don’t tell jokes about different types of people as they will likely find it offensive.


Roseanne Barr went on Twitter early Monday morning and blew up her career.”

The target of this tweet, Valerie Jarrett, a former political advisor who served under President Obama, reacted by responding at least she had a wide circle of support for her. She replied that she was worried about all the people out there who don’t have a circle of friends and followers to come to their defense in their time of need. The solution for this is if you hear racism or bigotry, simply be that circle for whoever is the victim of it; stand next to them and put your hand on their shoulder. Post a message saying that you’re sorry it was said and it was wrong, then address the author of the hurtful comment and hold them accountable.

There is good news, although not much, about this, and that’s we now live in a climate where hate speech is less tolerated. Because people on the spectrum are an easy target, it’s likely that comments, jokes, and sick imitations of them will be fewer and those that are made will be criticized much more heavily. Pakistani-American Kumail Nanjiani said that “nothing good has come of this entire thing”. If you disagree, you need to realize that talking about the damage is the start of change for this, and this change needs to happen for the world to be better.

Let Me Introduce Myself

Hello. My name is Stephen Pelzer, I’m 24 years old and I’m currently a camera operator for filming of the Autism Channel World News. I also research stories for the news program to use. A little while ago I was asked to start doing a blog for the Autism Channel. Here is my introductory post. I hope you’ll post comments – it can be lonely on a blog.

There are 3 main ways that people learn about autism. The first way almost everyone comes across the concept of autism is by watching movies and TV shows. Some TV shows include The Big Bang Theory, its recent spin-off show Young Sheldon, The Good Doctor, and Scorpion. A lot of people have seen or at least heard of the movie Rainman where Tom Cruise plays a man who learns that he has an autistic older brother played by Dustin Hoffman, and bonds with him during a road trip. My mom is a huge fan of the BBC show Doc Martin and my dad is a fanatic of Star Trek and its spin-offs. Both series have had at least one character with traits of autism. A TV show called Parenthood, which wrapped up in early 2015, had a kid who was diagnosed with autism in the first season and by the time the series wrapped up, his shadow married into the family. In future posts, I’ll talk about whether the media is getting it right, at least to me-and I hope you readers will comment.

The second main way people learn about the autism spectrum is by knowing someone with it, and it’s definitely a spectrum. One end of the spectrum is occupied by people who seem to be in worlds of their own and can’t or don’t want to spend much time away from them. I’ve met a few of those people and I just wish that there was a way to get to know them better. At the other end of the spectrum are the people dubbed “aspies”-people like Temple Grandin, Sheldon Cooper, Sherlock Holmes, my maternal grandfather, and me. I may have had other relatives with it but I can’t say for certain. I’ve been playing D&D since Christmastime 2016 and the players in my group “get” each other and have learned to live among non-Spectrum people, basically our equivalent of the Muggle world. There are moments where it’s hard for me to shift my focus to topics I don’t really want to focus on at the moment, but since the time when my parents first heard “Asperger’s” I’ve learned a lot, worked a lot, laughed a lot, and lived a lot, like most people. Let me know if you don’t really laugh that much. Many people know me for my jokes, and my cooking – but that’s another story. In future blog posts, I may post some recipes.

The last main way people learn about autism is in the news, but it’s not often portrayed positively or accurately. When a mass shooting focuses on the perpetrator having autism, it just sounds like trying to make sense out of something that doesn’t make sense, and it disgusts me. The current statistics are that 1 in 68 people in the US have autism, but that doesn’t automatically make them potential time bombs waiting to go off, or brilliant scientists, or underage doctors, or undefeated detectives, or innovative inventors. Most of us are just living our regular everyday lives like ordinary people, but we whisper more about our focused interests than others. If you would like to post with readers about your special interests and why they interest you, do so by all means. Let’s try to make this our own news and write our own personal stories.

Welcome to the world of autism. Just join me and share your world with me too. Even if you’re not autistic, you might be interesting in one way or another. Stranger things have happened in this world.

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”

Marvel’s Phase 2 Feast

Well Autism channel viewers, the Marvel Cinematic Universe concluded Phase 2 with Ant-Man and it is going to be a while before Captain America: Civil War arrives next year. However, seeing how two of my great loves are cinema and cuisine, I feel it would be appropriate to compare the Phase 2 Marvel movies to a full-course feast. For a sampling of each dish, click on the posters for their respective previews.  Now, on to the menu;

 

 

Iron Man 3

Poster2

Loaded Potato Skins (with fakon)

Loaded Potatoes2

Starting off this superhero feast is the appetizer. Much like loaded potato skins, Iron Man 3 is filled with many elements as not only is it the follow-up to The Avengers, but it’s also the final movie in the Iron Man trilogy. Directed and written by Shane Black (who has been credited with kick-starting RDJ’s career-resurrection with Kiss Kiss Bang Bang), it is the darkest of the Iron Man movies while also being the funniest as it expertly blends dark humor and darker stakes with the MCU’s signature action and snark. As for the Fakon (tofu bacon)… Well it would be a spoiler to explain exactly what I mean by that.

 

Quality: 4 ½ stars

Age: Yellow

Sensory: Yellow


Thor: The Dark World

Cheesy Garlic Bread

Yes, I’m going a bit out-of-order with this, but much like bread in a meal, Thor 2 is the “weakest” of the MCU Phase 2 movies, but only in comparison to the others here. Both cheesy garlic bread and Thor: The Dark World fulfills their jobs sufficiently and is fun in of themselves as well. While it does put a little too much focus on the comedy (hence the cheese analogy) and has the weakest villain in all the MCU flicks (seeing how he’s being pushed aside in favor of more Loki… not that I’m complaining) it’s still fun with good action and humor.

 

Quality: 4 ½ stars

Age: Yellow

Sensory: Yellow


Captain America: The Winter Soldier

Smokehouse Salad

A throwback to an older genre much like the movie this is a sequel to (The First Avenger was a throwback to pulp propaganda flicks while The Winter Soldier has elements of political thrillers). This is an especially accurate comparison as each of the ingredients in the smokehouse salad can compare to different aspects of the movie; the lettuce is like the healthy relevance to contemporary concerns over ‘security vs freedom’, the meat is for the narrative heft of Steve Rogers character development in being a solider displaced in time, the cheese is the humor, the fried onion tanglers are the crunch of the more brutal action (relying more on guns and explosives than the fantasy of Thor of the sci-fi of Iron Man and Guardians), the dressing is the fun, and all these elements come together to create one of the best gorram salads/movies of 2014.

 

Quality: 5 stars

Age: Yellow

Sensory: Yellow


Guardians of the Galaxy

Unexpected Stew

In all honesty, I’m not a stew person and thus I couldn’t think of anything specific, but this analogy still fits. Much like a stew, Guardians of the Galaxy was the result of throwing a lot of things into a pot and hoping for the best and boy does it. It masterfully blends together Whedon-style snarky character interactions, plenty of sci-fi action, and fun to become my favorite movie of 2014. Nobody saw this movie coming, but when it arrived no one was complaining.

 

Quality: 5 stars

Age: Yellow

Sensory: Yellow


Avengers: Age of Ultron

Turducken

Here we are folks, the hearty main event the previous courses have been setting up for. Much like a Turducken, Avengers: Age of Ultron crams together a whole lot of elements and established characters into a spectacle extravaganza that can seem daunting and a bit bloated, but still works deliciously well.

 

Quality: 5 stars

Age: Yellow

Sensory: Yellow


Ant-Man

Cherry Pie a la mode

Being the official end to Phase 2, it fits that Ant-Man be a scaled-down dessert to follow-up the huge main course as a cool down. While the stakes are much lower than in the other Phase 2 movies, it still works as much of the focus is on the comedy elements which work really well and they take advantage of the premise (shrinking powers) to deliver really creative action sequences and some of the character development is sweet too. As for the flavor; well Ant-Man’s suit is red and cherries are considered old-fashioned so it more-or-less fits.

 

Quality: 4 ½ stars

Age: Yellow

Sensory: Yellow

 

And that completes my film/food analogy. This cinematic feast was a lot of fun and my movie palate waters for what Phase 3 has to offer…

 

 

 

 

Mission Impossible: Rogue Nation Review

It’s the middle of summer, and you want to go to the movies. Most moviegoers just want to see a fun action movie, which is why films like Mad Max: Fury Road and Jurassic World have done so well this summer despite their lack of coherent story and developed characters. But if you’re like me, that won’t cut it for you. You want the characters to engage you in the film’s narrative so you care about the action better.

 

This is where Mission: ImpossibleRogue Nation comes in. The story is pretty simple. In fact, it’s exactly the same as all the other Mission: Impossible movies. Ethan Hunt (Tom Cruise) goes rogue from the CIA to find and defeat more rogue agents and arms dealers. He runs a lot, rides a motorcycle, and does some manner of insane stunts. The two people who definitely won’t be back for the next film are the female lead (Rebecca Ferguson) and the director (Christopher McQuarrie), and the villain doesn’t leave much of an impression. If you like the other Mission: Impossible movies, chances are you might like this one.

MISSION IMPOSSIBLE

But you guys want to read a full review from me, so I won’t waste any more of your time because the movie certainly doesn’t. Remember that shot at the end of every trailer? The one with Tom Cruise hanging off the side of an airplane as it’s taking off? Yeah, I know this isn’t a spoiler or anything, but that’s three minutes into the movie! Trust me, I counted! They got him on that airplane very quickly, and just as quickly got him off.

 

The rest of the action doesn’t disappoint either, in fact there’s two standout action scenes later in the movie. The first is a fight between Hunt and an assassin in the backstage of an opera in Vienna, and I am a sucker for any fight scene having anything to do with an opera. But it plays a game I like to call, “How Many Assassins Does It Take to Assassinate Someone?” (I know that’s a long title, but you should see some of the other games I played as a kid). The other big action scene takes place in a water tank underneath a power plant in Casablanca (I love what they’ve done with the place, but I do miss Rick’s), during which the cinematography is at its best.

 

Both of these scenes and the rest of the movie do one thing that any action scene should. They kept me guessing the entire time. I was constantly on the edge of my seat, waiting anxiously to see what was going to happen next. Rebecca Ferguson’s character Ilsa Faust, who is appropriately named after both the female lead in Casablanca and a fictional character of German lore who sold his soul to the Devil. Her character appears to change allegiances several times throughout the movie between Hunt and the villainous Syndicate, led by Solomon Lane (Sean Harris).

roguenation2-xlarge

But while Hunt and Faust are very compelling characters, Lane is not. I never bought into his character for several reasons. If you’re going to have this uber-intelligent and manipulative villain in a summer action movie, there must be an unmistakable presence that shows you this guy is in charge, and I never got that from Lane. The writing is to blame for most of that, but I give the screenwriters props for focusing more on the protagonists instead. But it’s Sean Harris who takes most of the blame for this character and his voice. He sounds like a kid trying to do his best impression of Vito Corleone for his middle school’s stage adaptation of The Godfather.

Sean-Harris-as-Solomon-Lane1

But let’s get back to the good stuff, shall we? Simon Pegg returns as Benji Dunn, and he gets many of the best lines in the movie. My favorites of his are before and after a motorcycle chase in Casablanca. I won’t give them away, but I was laughing out loud while also acknowledging their brilliance in the script. Pegg’s delivery of said lines was also a major element of how they worked. Other returning cast members include Jeremy Renner as William Brandt and Ving Rhames as Luther Stickell, and both of them are solid in their roles.

 

Overall, your enjoyment of this movie depends on how much fun you have while watching it, and I loved it. It’s action-packed, but not totally devoid of the stuff that makes great cinema like story and character. See it on the biggest screen possible because it’s the action set pieces that make this movie, and one of the reasons they work so well is because we as audience members have grown to like and care for the characters that the action is happening to.

 

Quality: 4 ½ stars

Age: Yellow (action and violence, brief partial nudity)

Sensory: Yellow (loud noises from car crashes and explosions)

 

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: Independent Woman’s Handbook

This past week, I had the pleasure of reading “The Independent Woman’s Handbook For Super Safe Living On The Autistic Spectrum” by Robyn Steward (available from Jessica Kingsley publishers.) Now, I think it is important to disclose that I am not on the autistic spectrum. However, three of my children are—and it is with that perspective that I read this book.
COVER
One of the most interesting things that I have recognized as a parent, is just how much I took for granted when it came to social cues and situations. These are skills that have mostly come easily to me—this is however not so for my children. So, one of my biggest concerns is how exactly do I help them to navigate this world so that they may live as full and as independent a life as possible: safely and with confidence. The answer is in this book.

The book is chock full of information. Some of the topics include “platonic relationships”, “sex”, “drugs alcohol and other substances”, “money”, “work” and “moods and emotions” to name a few. The last chapter “Useful skills and strategies for multiple situations,” is followed by an appendix that offers strategies, very useful resources, and references. It is so full and informative that if there is a specific topic not mentioned—one could very easily take what they have learned and apply it to most any situation.

…how exactly do I help them to navigate this world so that they may live as full and as independent a life as possible: safely and with confidence. The answer is in this book.

Although it is full of practical solutions and common sense advice, this is much more than a “how to” book. The author, who is also on the autistic spectrum, writes in a very honest and compelling manner. Sharing both her experiences and those of others (both on and off the spectrum) that she interviewed for this book. It is both open and honest—while at the same time accepting that the reader may have a different experience or point of view. There is a very strong message/theme throughout the entire book that says “It is OK to be who you are” that will empower its readers. Giving them confidence to make the decisions that will keep them both safe and secure in their choices—while at the same time, feeling good about who they are.

While the book is gender specific, I think that it could be a valuable tool for anyone on the spectrum—as well as for parents who have children on the spectrum. Right now, my daughter is too young for some of the topics. However, this book gives me really useful strategies, tips and tools so that I may raise her to live as full, independent and safe an adult as possible. Later on, It will be a wonderful resource for her.

If you are a woman on the spectrum, a parent of someone on the spectrum or work with people on the spectrum—this is a book you should own. Its honesty, openness and practical solutions make it a must have for your bookshelf. I wholeheartedly recommend this book—and can say quite honestly, that I hope she writes some more.

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


Kathleen Leopold is a blogger, one of the co-founders of the Autism Blogs Directory, and one of The Blog Ladies seen on The Autism Channel.

Palm Beach Post introduces its readers to our ‘Siskel and Ebert’

This Saturday, readers in the palm beaches awoke to an edition of The Palm Beach Post with a story about our on-the-spectrum film critics on the front page of its Accent section.
We reprint it here with the Post’s kind permission:

 Meet autism’s Siskel and Ebert

Hosting everything from news to movie review shows,
a West Palm network for — and by — the autistic
is helping change stereotypes.

By Barbara Marshall – Palm Beach Post Staff Writer

 

In front of a green-screen set in a West Palm Beach TV studio, movie critics Michael Precourt and Anthony Canzonetta are dissecting “Don Jon,” Joseph Gorden-Levitt’s racy directorial debut.

The acting? Not bad, they agree. They like Scarlett Johansson, of course. They’re 20-something males.

Directing and script? A solid effort.

They finish the episode of “Private Screening” with a warning: “It gets a red for sensory.”

Their specialized audience understands the coded shorthand. The film has a high potential to cause sensory overload in people on the autism spectrum.

People like Precourt and Canzonetta.

“There are flashing lights throughout the movie,” advises Precourt.

“Ow, ow, ow and ow,” said Canzonetta, the “Ebert” to Precourt’s “Siskel.

He makes a rhetorical request of filmmakers. “No more going from black screens to flashing lights, OK?”

“Yeah, don’t go all Baz Lurhmann on us with a bunch of half second clips,” says Precourt, who, like his TV partner, is a student at Florida Atlantic University in Boca Raton. Precourt is a film major; Canzonetta is pre-med with a minor in film studies.

Also like Canzonetta, Precourt has Asperger’s Syndrome, a form of autism associated with focused interests, high-functioning abilities and difficulties with social skills.

Their program is one of dozens streamed weekly from Flying Pig Ranch Studios on Haverhill Road in West Palm Beach, home to The Autism Channel (TAC).

Although TAC’s shows are aimed at families with members on the autism spectrum, the channel may be the only network that regularly puts people with autism in front of the camera.

“We look at it like when Diahann Carroll starred in “Julia” in the 1970’s,” said Jerry Trowbridge, a co-creator of the network. “She was the first black actor to star in a major TV show. We want to have a similar impact.”

Viewing the on-demand video streaming channel requires a $49 to $100 Roku box, although TAC may soon have a new platform on Panasonic smart TVs, Blu-ray players and gaming consoles.

Actors playing people with Asperger’s have become a recent TV trend. Diane Kruger in FX’s “The Bridge,” “Parenthood’s” Max Braverman as well as Sheldon Cooper on “The Big Bang Theory” and “Community’s” Abed Nadir are all characters with either stated or assumed autistic personalities.

But on TAC, no one’s acting.

…He believes, as do a number of autism activists, that the autistic brain may be the vanguard of a higher form of human evolution. The autistic personality of intensity, focused interests and little need for emotional attachment is tailor-made for a digital age where people work with devices rather than each other, [Precourt] says…

Daniel Heinlein, the host of the talk show “I Am Autistic,” is a 26-year-old from the Chicago area with Asperger’s. “Rocket Family Chronicles” follows the exploits of a wacky San Francisco family whose most well-adjusted member is an autistic teenager.

A couple of cooking and exercise shows have stars or co-stars with autism. A reality program called “At Home With …” profiles families coping with autistic children. In addition, a weekly news show covers the latest news about autism.

TAC’s highest rated show is “Time Out,” seven minutes of soothing music and images designed to calm an agitated autistic brain.

Trowbridge and his partner, Ray Smithers, are radio news veterans and serial entrepreneurs. In the 1980s, they developed a 1-800 telephone system to help customers locate the nearest Walgreens or Cirrus network ATM.

The idea for TAC was born after the men heard a TED talk by Temple Grandin, the Colorado animal science professor and autism activist, who described her thinking process.

“Hearing her, both Ray and I realized we’re probably on the spectrum, too,” said Trowbridge, who speaks in rapid-fire bursts. The men, who are business and life partners, sleep during the day and work all night. Trowbridge taught himself the complex programming necessary to stream TAC. Smithers concentrates on programming and production.

They sunk “six figures” of their own money into their startup, their gamble bolstered by a near doubling of autism diagnoses among children in the past decade, to one in 88 in 2008, according to the Centers for Disease Control and Prevention.

From the start, they decided to put people on the spectrum on their shows.

“We had no idea how right we were. We’ve learned that viewership for those shows is off the hook,” said Trowbridge.

Autism programming, believes Trowbridge, is ready to go from obscurity to mainstream.

“It’s a little niche-y,” he said, “but then, so is ‘Duck Dynasty’.”

Once on the Panasonic platform, which he hopes will happen by the end of the year, he expects 50,000 to 100,000 viewers a day.

“That makes us attractive to advertisers, ” he said.
MarshallStoryPicEnlarged
The rise of TAC coincides with a radicalized autism rights movement that borrows the language of liberation politics to insist that autism is a variation in function, not a mental disorder needing to be cured. Instead they say, society needs to be cured of its stereotypes about autism.

“Auties” and “aspies,” as they call themselves, think in neurodiverse ways, they insist, while the non-autistic are neurotypical.

“Nothing about us without us,” says members of autism advocacy groups such as the Autistic Self Advocacy Network and Autism Network International, which demand the right for autistics to define themselves.

“This is the new face of autism,” said Dr. Jack Scott, a professor of exceptional student education at FAU and the director of the school’s Center for Autism and Related Disabilities. Scott is also on TAC’s advisory board. “It’s similar to the deaf community of a few decades ago. Many members of that community were fine with being deaf and didn’t want to be labeled disabled.”

“It’s groundbreaking in (autistic’s) insistence on validation and that they have something important to say. They can speak for themselves, even if they have to type it,” Scott said.

FAU has “40 to 50” students on the autism spectrum, Scott said, many of whom excel because of their ability to focus.

Still, autistic kids require high-quality early childhood intervention, Scott said.

Movie critic Precourt said he began therapy soon after he was diagnosed at age 3. Sitting in an FAU courtyard outside a campus Starbucks on a sunny afternoon, Precourt speaks loudly in pronouncements, rather than the give-and-take of conversation.

At his mother’s suggestion, the Orlando native stopped by the TAC studios last summer to discuss doing movie reviews and walked out with his own show.

“We screen-tested him and he jumped off the screen,” said Smithers.

A member of FAU’s community council and the publicity committee for his dorm, which presents dances and barbecues, Precourt says he’s learned the importance of social interaction even though he sometimes misses others’ emotional cues.

He believes, as do a number of autism activists, that the autistic brain may be the vanguard of a higher form of human evolution. The autistic personality of intensity, focused interests and little need for emotional attachment is tailor-made for a digital age where people work with devices rather than each other, he says.

“People act like we have a disability,” he said. “Autism is not the same as being disabled.”

When it comes to being one of the faces of TAC, Precourt says, “We are at the dawn of a new era. I’m proud to be a part of that.”

As for Trowbridge, he tries to dodge the brickbats flying back and forth between various autism groups fighting over causes and cures.

“So many organizations have a dog in this fight about what autism is. We see a need for an impartial disseminator of autism news. We’d like to be present when we finally understand what autism is. I believe that will happen in the next few years.”


This story is a part of The Palm Beach Post‘s premium content, and is available to subscribers only.

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.