Greta Thunberg is Person of the Year

Greta Thunberg, the teenage climate activist from Sweden, who just happens to also have Asperger’s Syndrome, was recently named by TIME magazine as their “Person of the Year”. While I myself am not an activist for anything in particular, I do heavily admire her efforts. It is quite a milestone that the person who is finally getting the world to focus on climate change is a teenage girl. Let’s take a look at the journey she took and how she has captivated the world with her intimidating speeches, how she responds to people who mock her, and the bigger movement she started.

When Greta was 11, her primary-school teacher showed her class a video of the effects of climate change and explained all that was happening because of it. While the other kids felt glum about it, but otherwise moved on, Greta didn’t. She started feeling incredibly alone and fell into a depression. She stopped speaking for months and so little that she almost had to go to the hospital for malnutrition, which ended up only stunting her growth. She recalled feeling confused during that time, saying she couldn’t understand how it could exist and not be prioritized and was in a bit of denial about it.

At first, her father Svante reassured her that everything would be okay, but as he read more about the crisis, he realized he had been wrong “his entire life”. The whole family soon started changing their habits to reduce their emissions: mostly stopping eating meat, installing solar panels, growing their own vegetables, and giving up flying by plane. They didn’t really do it to save the climate, her parents say, but mostly because they wanted to make her happy and to get her back to life after that period of depression. Slowly, Greta began eating and talking again.

Her diagnosis with Asperger’s helped explain her powerful reaction to learning about the climate crisis. Because she doesn’t process information in a typical way, she couldn’t sort out the fact that Earth was in danger. She says she’s grateful for that in some ways, explaining if her brain worked differently, she wouldn’t be able to sit for hours and read things she was interested in. In May 2018, when she wrote an essay about climate change published in a Swedish newspaper, she was contacted by a handful of Scandinavian climate activists and she suggested they model their campaign after the students of Marjory Stoneman Douglas High School protesting gun violence. They decided against it, but it stuck in Greta’s head. She told her parents she was going to go on strike to pressure the Swedish government to meet the goals of the Paris Agreement, lasting until the elections in September.

People tried convincing her to try a different way, but there was no moving her. She put together flyers with facts on extinction rates and carbon budgets and a cheeky sense of humor. On August 20, she arrived in front of Parliament alone with just her homemade school-strike sign. She said learning about climate change triggered her depression and got her out of it, because she could improve it too. Her father said striking made her “come back to life”. On the second day, a stranger joined her. A few days later, more came. By early September, enough people had joined that she announced she would continue every Friday until Sweden aligned with the Paris Agreement, starting the Fridays for Future movement. By the end of 2018, tens of thousands of students throughout Europe started skipping school on Fridays to protest the inaction of the leaders in their own home countries. In January 2019, 35,000 students in Belgium protested following her example, striking a chord. When an environmental minister insulted them, a public outcry forced her to resign from office. Talk about the old Bible quote, “And a child shall lead them”.

In September, the strikes spread beyond northern Europe. In New York City, a quarter of a million people reportedly marched in Battery Park and outside City Hall; in London, 100,000 people swarmed the streets near Westminster Abbey; 1.4 million people took to the streets in Germany alone. About 4 million people worldwide were protesting, each having a sign telling a different story. Make the World Greta Again became a rallying cry. Thunberg’s moral clarity inspired other young people around the world too. 16-year-old Rita Amorim from Lisbon says she wants to be like her, and others worldwide have started their own climate protests. Thunberg has become the voice of millions, a symbol of a rising global rebellion. Way to go, Greta.

Thunberg’s speeches often go straight for the gut. In her first big address at the United Nations, she said, “you say you love your children above all else, and yet you are stealing their future in front of their very eyes”. This went viral almost immediately. Over the last year, she’s given dozens of similar admonitions, talking to chief executives, heads of state, thought leaders and even movie stars, speaking quietly but forcefully every time, articulating the sense of injustice often obvious to the very young, saying adults, by not acting in the face of extraordinary crisis are being foolish at best and corrupt at worst. Her blunt honesty is cathartic to those who share her fear and threatening to those who don’t. Her sharpest weapon is shame. Former President of Ireland Mary Robinson describes Thunberg’s approach as more effective than her own.

Greta is no stranger to being mocked as a result of this. Online trolls mock her appearance and speech patterns; a Roman hung her in effigy off a bridge; she was shouted that she was in oil country in Alberta, Canada; Maxime Bernier, leader of the far-right People’s Party of Canada tweeted that she was “clearly mentally unstable”; and Jair Bolsonaro, the president of Brazil, called her a “little brat” after she tweeted about the killings of indigenous people in the country. She co-opted both his and President Trump’s frequent ridicule on her Twitter bio. It’s hit the point that she often now has to be protected by police whenever she travels. For the most part, she sees this as evidence that the climate strikers have hit a nerve. “It’s a good sign because that shows we are making a difference and they see us as a threat”.

With all of this to consider, it’s only a matter of time before her wishes for the world that can be granted and world leaders all over will listen to this movement she unintentionally started. We’re told that anyone has the power to make a difference, we just need to wonder how far we’re willing to go. Greta, I can tell you intend to go far. You go girl.

Who Will Be Next?

On January 20, our nation celebrated Martin Luther King Day by-not doing much to be honest. My niece, who is currently in second grade and about to turn 8, hasn’t even heard of him yet, so last Friday night over dinner, we told her about him and his life’s work. There was also a graphic of Dr. King on Google, but that was about it.

Armed with a massive amount of video releases, we chose to mark the occasion by watching a message video: The Help. This led to a discussion about how writing about the situation was a contribution by someone who didn’t march, but still wanted to have an impact (just count on my mom to pound every learning point home-I know I do). For younger viewers, I recommend the short film “Our Friend, Martin”. I recommended it to my older sister for her kids so they could have the information their school hadn’t given to them yet. From the same creative team behind my favorite history series from my youth “Liberty’s Kids”, it uses an all-star cast to tell the events of Dr. King’s life as two middle schoolers time travel through it, and it sensitively deals with his martyrdom. It’s free to watch online, so check it out the minute you can.

On Saturday, Mom and I saw something as an attempt to think about the impact that laws and ignorance of it have on those who need protection the most: “Just Mercy”, which is getting well-deserved excellent reviews. Rather than simply being based on a true story, it recounts the actual events of a lawyer’s mission to ensure justice for Death Row inmates in Alabama, a majority of them black. The fact most of them were black made them not get competent lawyers to help them, the evidence presented was almost never based on facts or their mental capacity, and doomed them to a wait for the electric chair (which is heartbreakingly shown from the viewpoint of the witnesses in one scene).

After seeing Just Mercy, my mom made the point that watching it made her feel the same way as when we saw “Hidden Figures” a few years ago as it was another movie about people being overlooked due to their skin color. It was about the women geniuses in the early days of the space program, doing work that was essential but they were in constant fear of the consequences of being black in the 60s. Both movies we saw with a mixed race audience and although my mom wasn’t even old enough for school when these events happened, she felt complicit somehow, being haunted by the sins of long-gone Americans who should’ve treated their neighbors better. For other viewing, there are a number of episodes of the original Twilight Zone series from the same decade to check out as well as the Jordan Peele film “Get Out”.

All of this viewing allowed me to think of the dangers of bigotry and judging a whole group of people by the actions of a very few facts or often just based on fear and using bigotry as an excuse to do whatever seems needed or convenient at a given time. In many photos of Dr. King and volunteers marching, there were people who weren’t persecuting them-like priests, ministers, and rabbis. These people participating was more than standing with brothers according to the Bible. I think it’s recognizing that a society oppressing one group eventually moves those same tactics to another group, which they may be members of themselves.

With this context, I wrap up with the words of Martin Niemoller, a German who lived in the time of the Nazi party. He at first thought Hitler had good ideas to rebuild Germany and he ended up spending the rest of his life as a Lutheran minister apologizing for his earlier views. His words are often expanded to include various other targets of his time, but the basic thought is always the same: we should protect the rights of those denied protection of the law because if evil is allowed to control, there is no protection for any of us. That was also the point of Jordan Peele’s other film “Us”. Hey, nice title there. As you read this writing of his, say a prayer for the 275,000 people with handicaps or disabilities that were exterminated by the Nazis-innocent people whose rights and very lives weren’t recognized as having any value. As someone with autism, I don’t know what my fate would’ve been; frankly, I don’t even think I want to.

First they came for the socialists, and I did not speak out—because I was not a socialist.

Then they came for the trade unionists, and I did not speak out— because I was not a trade unionist.

Then they came for the Jews, and I did not speak out—because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

We now live in a world where technology gives us all a voice. Ask yourselves what you’ll use yours to say.

Nonverbal Autistic Highland Park Teen Blogs to Reach People Like Him

For anybody with autism, getting anybody to understand what you want or need at any given time can be difficult enough as it is. It’s even worse if you’re nonverbal and have to find alternative ways of communicating with people. There are a number of therapies being tested to help with that, like spelling out words and learning sign language. Let’s meet a teen from the Chicago area who has started reaching out to both reach others like him and teach other people about them.

A few years ago, Mitchell Robins, a nonverbal autistic, couldn’t tell anybody precisely what he was thinking. At age 4, he lost his ability to speak and primarily relied on a system of pictures and limited sign language to tell his parents and caregivers what he wanted to eat, when he felt sick, or how he wanted to spend his time. Then, his parents realized he could spell. Now 17, Mitchell communicates deliberately, pointing at letters on a board. A question will be asked to him and his expression will go back and forth between deep concentration and a jovial grin as he spells out his answer. Mitchell has said that using this type of communication has changed his life because he could get his wants and needs met. He’s very happy people are finally figuring out how to reach people like him because it’s a human rights issue that needs to be solved. I hope we’re getting closer to that every day too, Mitchell.

After all of this happened, he was able to tell his parents he wanted to start taking classes at the local high school and meet with friends at a coffee shop, where they would talk about normal things that teenagers talk about. When his parents realized he understood much more than they thought, his mom, Susan Robins, said they went from reading him Dr. Seuss to Harry Potter “basically overnight”. Maybe you should’ve started paying attention to him sooner, Mrs. Robins.

In March 2019, Mitchell started a blog about his daily life. Mitchell hopes to show the world that those who communicate differently shouldn’t be underestimated by telling his story. The blog already has readers from almost every continent. Susan says this about her son with tears in her eyes, “It shows you the huge capabilities of these individuals with autism who are nonverbal. They have huge capabilities, but we just don’t know how to access it, and this is a way to access it. Mitchell has so much to share, and we just didn’t know”. Back in 2012, Susan attended a presentation about a therapy called Rapid Prompting Method, teaching nonverbal individuals to communicate by spelling, answering fact-based and yes-or-no questions on a plastic alphabet stencil board, building up to open-ended questions on a paperlike letterboard. Many spellers eventually transition to independent spelling on an iPad or computer keyboard. Sounds pretty useful, and innovative depending on who you ask.

Susan was skeptical as in previous therapies they tried, Mitchell wasn’t able to select from a set of cards which one had a happy face. When she expressed her concern about Mitchell learning spelling, one of the presenters parents told her he knows. She soon realized her son was absorbing the world by reading books and street signs and listening to his dad help his sister with her algebra homework. He actually understood everything but didn’t have a way to tell them. Another reason to pay better attention to your kids, parents.

When Mitchell started the therapy, he spelled to his sister that he loved her for the first time ever. He also writes letters to his mom thanking her for all she does. When they started practicing math, he already knew how to solve equations, but needed to learn simple tables he hadn’t been taught in school. Last semester, Mitchell got a B+ in the business class he’d been taking at Highland Park High School, on top of a full online course load including advanced physics and social studies. He particularly enjoys learning about the civil rights movement. There hasn’t been much research to back up success stories for this type of therapy, but Susan has seen the difference it’s made in Mitchell’s life. Maybe add this to the list of success stories for it?

Susan has said they obviously loved Mitchell before all of this started, but they would be dressing him and feeding him and trying to get him to smile, but they never really knew him. Mitchell sets his own goals during sessions with therapists who help him with his schoolwork, life skills and communication. He’s been practicing writing posts for his blog with fewer breaks and holding longer conversations. Taylor Janisch, one of his therapists, says after every session they talk about a topic of his choice, saying she considers Mitchell a friend. While Mitchell spells, someone holds up the letterboard to his visual field and nobody moves the board or touches his arms or hands. Susan says he’s come a long way since he started and is reaching what can be considered open communication. Janisch says lots of people in the school system Mitchell’s age are being asked a lot of questions and to imagine if you couldn’t speak or communicate but were still you inside yourself, not knowing what to do and feeling trapped. Don’t we all feel that way sometimes, not knowing the right thing to say or feeling we can’t say anything at all for any reason?

Mitchell eventually learned to type on an iPad that speaks what he’s writing and types his blog posts on a computer keyboard by himself. For people who struggle with motor skills, spelling can be exhausting, so for breaks he flops on a beanbag in a corner of the room. He uses sign language for quick requests. He says he blogs to help families of other nonverbal people with autism understand their capabilities. He recently wrote about the frustration he feels when people talk down to him simply because they assume he can’t understand what they’re saying. I had a teacher in my senior year of high school who treated me almost the exact same way, so I relate to your frustration Mitchell.

Readers sometimes leave messages asking about the therapy and encouraging him to keep writing in the comments section. Mitchell has said that reaching people feels amazing because he’s making a difference. He further says that people need to stop underestimating people with autism because their perspective is as important. They’re intelligent and amazing people who deserve the benefits of open communication.

So try to find this blog, check out some of the posts and comment. I’m kind of considering checking it out myself actually. Thanks for sharing your story Mitchell. I hope more people find out about it and even try out the therapy you were tried on for other nonverbal people.

Autism and Alternative Ways to Communicate

On a humid summer 2019 morning in Herndon, Virginia, three college-aged boys walked to a local river for an eco-friendly art project involving making mud. As they mixed it with sticks and pushed a paint roller back and forth in it, they were practicing a skill they wanted to improve on: movement. As they were filling in the stencils, the boys turned their various motions into a nonverbal method of communication.

Turning physical movements into speech can be challenging for people with autism and sensory disorders. Both conditions affect coordination and make it hard to perform learned motions-even the ones as seemingly small as the ones people need to speak. In my case, I just often have a hard time finding the right words to say. Alternate communication methods, like spelling it out, have become everyday aspects of life for students at Growing Kids Therapy Center in suburban Washington state. Elizabeth Vosseller, executive director of Virginia’s Growing Kids Therapy Center, says their population of nonspeaking, unreliably speaking, and minimally speaking individuals has a motor-sensory difference at its core. Dr. Connie Kasari, a UCLA professor in the center for autism research and treatment says your mouth is like a limb and your oral system is like an appendage and if you’re not very coordinated, it will affect how well you can produce movement, speech being one of them. The students at the center range from 5 to 54.

The Growing Kids Therapy Center’s “spell-to-communicate” method is a unique one as it incorporates movement into nonspeaking communication. Other hubs for these “spellers” include Atlanta and South Africa. If any of you are familiar with the old show Speechless, it follows a nonverbal kid who uses a board attached to his wheelchair to communicate, so this is kind of similar. Despite the method’s success among some students, Kasari says it still needs to go through more testing, as physically spelling words doesn’t work for all nonspeaking individuals. She says they’re looking for more options because there’s a lot of heterogeneity in autism.

Vosseller says the students fully comprehend conversations going on around them, even though they can’t respond with talking. She says to envision it as losing your voice and going to full-blown laryngitis. You’re not losing your ability to comprehend, just to articulate. Good lesson for the whole modern age if you ask me. Using boards that display the alphabet, or even common stencils, the students spell out words instead of saying them. This simultaneously helps them work on motor skills through physically reaching out, pointing, and touching the board. Other activities like eco-graffiti art (the mud project mentioned at the beginning) also help students practice movement. Vosseller says “practice doesn’t make perfect; practice makes permanent”. All right, doc.

Vosseller further says that money, time, and finding the right research team mean testing the method is an ongoing process. She adds that they have a growing body of researchers looking into this and it takes a while for someone to be interested in researching it. Using movement as therapy has led to positive results for people with other physical differences too though. David Leventhal, a professional dancer who runs Dance for PD, a organization in New York that uses dance to help people with Parkinson’s regain control of their bodies, says everyone is a movement expert because we all have to navigate the world through physical action and people with particular challenges are even more of experts because they’re required to problem-solve all the time. Embodied conscious movement is just a different way of communicating. Vosseller says as motor skills improve, communication improves. It allows them to be part of the conversation instead of the subject of it. This is a great way to encourage inclusiveness. Largely in part to their newfound access to communication, students from the center are becoming advocates for people with autism in northern Virginia.

Let’s take a break and tell a story about someone who has become an advocate. When he was 15, Ian Nordling was almost arrested by police officers in his hometown of Mercer Island, Washington. Now 21, in a joint interview with his mother Rosaleen Presley, explains he caused a disturbance by walking in the street when he couldn’t follow instructions the way the officers directed him to. He says if his dad didn’t show up when he did, the outcome would’ve been different. Speaking about Ian’s incident, Herndon Police Chief Maggie DeBoard says it was likely a result of lack of education on the police officer’s part.

Today, Ian educates officers at DeBoard’s station, helping them understand how to interact with people with autism and other special needs. In an email, he explains he wants people to know how hard it is for autistics to control themselves. Sometimes it feels like they’re a puppet for autism and no matter how competent they are, autism won’t let their brains take control. It may be hard to make sense of it if you don’t have autism. But Ian hopes people can get a better understanding and show compassion and respect to all autistics. DeBoard says she’s grateful for Ian’s willingness to get more involved with the Herndon police department after having a bad experience somewhere else. She says he opened a lot of people’s eyes and all the officers she worked with over the years want to do the right thing but don’t always know how to do it. Ian made a pamphlet guide at the station with tips for how officers can identify and interact with an autistic individual. They were gone within a few days and all the officers keep them handy during their daily work. Nice job Ian.

Through Ian, the police officers in Herndon now know to look for cues indicating a person might not be able to communicate verbally and may have sensitivities to touch, noise and light. These can include acting overwhelmed and running away from officers. They’re now set to implement a special-needs registry so officers can be made aware of the varying needs of people living in the area. This way, if there’s an emergency involving someone with autism or another difference, the police will know how to communicate appropriately.

Hopefully with everything going on with both Ian and the Growing Kids Therapy Center, more people are finding other ways to communicate with not just people with autism, but the world at large. So try to understand nonverbal communicators and what they’re going through. They’re more human than you may like to think.

Autism and Self Harm

We all tend to engage in dangerous behaviors at some point in our lives. Usually, this happens in very small children who don’t know any better or teenagers who want to get wild and risky while under some questionable influences. But what happens when young adults engage in it? is it made worse if they have autism? Let’s take a look.

According to a study published in October in Autism Research, nearly a third of young people with autism put themselves or others in danger in any given three-month period, and nearly 25 percent of them will not have seen a mental health professional during that time. This study is based on a parent survey looking at people with autism between the ages of 3 and 25. The survey was sent out to a large database of families with autistic children, but only 462 families, amounting to 7 percent of those who received it, actually completed it. The leader of this biostatistical analysis, Luther Kalb, assistant professor of neuropsychology at the Kennedy Krieger Institute in Baltimore, says the results may overestimate the prevalence of these events because families who experienced them are more likely to respond. The researchers also adjusted their analysis to account for this bias, as he adds that it’s still common enough to warrant attention. Bias accounts for many autism cases, so it’s nice to see that these people take biases into account when doing their research.

According to the study, in children with autism younger than 12, the incidents tend to be related to self-injury, wandering, or running away. In young people between the ages of 12 and 25, the episodes often involved physical and verbal aggression, usually aimed at the parents. The younger the person with autism and the lower their quality of life, as reported by a parent, the more likely they are to have one of these incidents. Having poor language skills and a parent with depression can also increase these chances. I don’t know what would’ve happened to me if I had a different set of parents. I can’t help but wonder what the parents of the kids observed were going through when they were asked to participate in this study.

This work may help parents and clinicians develop plans to preempt and manage dangerous behaviors in children with autism. Kalb says that we can start identifying populations that may need more intervention than others.

Why I Love Dear Evan Hansen

I’ve been a theater and movie fan my entire life. I don’t remember exactly when my love of movies started, but I’ve been a huge movie buff as long as I can remember. I believe my love of theater started when I was really little and went to see a performance of the touring version of a revival of Peter Pan with Cathy Rigby at the Broward Center for the Performing Arts. I don’t remember much about it but I’m pretty sure I was enchanted by it overall.

Until last year, however, I didn’t really know about a theater show that particularly grabbed me. That changed when I came across a song posted online from Dear Evan Hansen called “Waving Through a Window” and I was instantly hooked on the show and wanted to see it so badly. My top three favorite songs from the show are “Waving Through a Window”, “You Will Be Found”, and “Words Fail”. I think what draws me to this show the most is how relatable the character of Evan and his situation is. He has severe social anxiety, struggles to connect with people, struggles with trying to talk to his lifelong crush, and wonders if he really belongs anywhere. These are all things that literally anybody can relate to and have actually dealt with at some point in their lives. I know I’ve dealt with all of that and pretty much everything Evan was going through, even suicidal thoughts for a brief time, but I knew doing that wouldn’t solve anything.

When I found out it was going to be going on tour last year and would be coming to my area in the spring a little after my birthday, I knew the thing I wanted the most for a birthday present was to get tickets for it. My mom didn’t want to accompany me because of the content and sad themes, but I convinced my second oldest sister to come see the show with me. Sometime before, I purchased the book based on the show, which I have yet to read but plan to at some point in the future, and have heard that it’s as amazing as the show because it captures the emotion and everything about it.

When I spilled out everything I’d been going through to my mom the previous Christmas, I finally figured out why I wanted to see Dear Evan Hansen so badly and was so addicted to it: because I was Evan. I was dealing with a lot of stress and had been bottling it up for so long that it had become unbearable, like how Evan was bottling up everything he felt and it all just came flowing out. Evan and I both learned that bottling up any negative emotions is terrible for your mental health in the long run. When it finally came to town and I went to see it, I was blown away. The show hit me in all the right ways and I knew how I connected with Evan. My sister and I walked out and when we talked about it, we both said we liked it and agreed that while it was emotional, it wasn’t depressing overall. Over time, I realized it was really a show about promoting good mental health which is both important for people to have and is needed with all the stuff that we’re both seeing and hearing about. For these reasons, Dear Evan Hansen is now my favorite Broadway musical of all time.

The show even inspired me to make a music video using one of the songs from the show, which I finished over the summer. Since it’s Christmastime, I wanted to share it with you. If there’s a chance you’re not familiar with Dear Evan Hansen, there’s a very good chance you’ll be familiar with who the subject is: Rudolph the Red-Nosed Reindeer. Rudolph and Evan are actually very similar when you get down to it. They both want to feel accepted by society, they both feel like they don’t really belong anywhere, they both have something they don’t want others to know they have, and they both ultimately learn to accept themselves. The link for the video will be at the end of this post, so go check it out and please leave a comment. Read the description of the video before seeing it.

And that’s why I love Dear Evan Hansen.

Not Getting to Procrastinating

Hello readers. I understand it’s been a very long time since you’ve heard from me on this particular blog. I’m going to be restarting to write more material for this blog. I’ll be posting a new entry at least once a week and I hope others will read it and contribute so that it feels more like a discussion among friends than a lecture.

Allow me to explain. Like most of you reading this, I’m an aspie, and people with autism have intense interest in a variety of different subjects; I’m like that too. This has some pros and cons to it. It lets me focus on certain things while tuning others out. This helps when I’m feeling stressed out but it also keeps me from doing important projects like this one. In short, often the way I focus doesn’t allow me to do everything I’d like to do on a day to day basis.

Here, we’ll be talking about our favorite obsessions. Some of mine include watching Wheel of Fortune and Jeopardy on weeknights, playing Dungeons and Dragons, coming up with ideas for movies for when I’m a director, listening to old radio shows or creepy online stories or the podcast Lore, doing aerobics with Sweatin’ to the Oldies, reading when I can, and squeezing in some time watching Thomas the Tank Engine when I can. I do have more but I don’t want to bore you with talking about me constantly and listing the rest would most likely take all day.

So as you can see, there are a lot of things I do like to do but I never have enough time to do them when I want. A lot of them are stuff I tend to do whenever I feel stressed out about something, so it’s also hard to pick out what it is among them that I want to do, which can potentially create more stress, but I do find ways to deal with it by simply focusing on one of those things at a time, not always in the same order. Other times, I feel like I might want to do something else when I feel stressed out. It just depends on the mood I’m in at that moment.

I want to hear from you. What are some things you like to do when you feel stressed? I want you to feel like you’re important because you’re the reader and your opinion matters. Post what you like to do below. I have a t-shirt that says “introverts unite (separately, in your own homes)”. This is what I want to feel like is going on here. So, read and comment, because you matter as the reader.

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.

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

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

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

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

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

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

 

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


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

The Autism Bookshelf: What Every Parent Needs to Know

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

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

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

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

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

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

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

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

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

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

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

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

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