Monday, December 30, 2013

Dr. Paul Offit on the Sense and Nonsense of Alternative Medicine

Things that seem to good to be true usually are, yet when it comes to alternative medicine far too many people put their faith in belief and testimonials rather than science. Dr. Paul Offit's must-read book, Do You Believe in Magic? takes on alternative medicine's producers and practitioners, explaining why their products and therapies are generally not better and certainly not safer than traditional approaches. Yet his approach is compassionate -- he understands that people want guarantees, hope, and sympathy, and will go elsewhere if traditional medicine can't provide those things. We talked with Dr. Offit about all these topics, as well as whether or not alternative approaches do have some legitimate benefits, and how his own thinking about alternative approaches changed while he was writing and researching Do You Believe in Magic?
 
TPGA: Many folks view the alternative medicine industry as a group of outlaw heroes, who give people safer and cheaper alternatives to the traditional medical industry. Do you think people understand that the alternative industries are not only hugely profitable industries, but have lobbied themselves into immunity from FDA [Food and Drug Administration] safety regulations? 

Dr. Offit: No -- I think very few people understand that these companies are under no obligation to support their claims or admit their harms. I think people assume that when they go into the General Nutrition Center or they buy something from Dr. Mercola, that supplements and vitamins are regulated industries. People assume that when it says 20 milligrams of selenium on the bottle, for example, that there's 20 mg of selenium in that tablet and nothing else -- and that's not the case. Ever since the Dietary Supplement and Health Education Act in 1994  -- which in the upside-down world of alternative medicine always means the opposite of what it actually says -- those industries can make claims broadly, and they don't have to tell you if the products are found to be quite dangerous. We've been hoodwinked! I think people don't realize that.

All I ask for in this book is that alternative therapies be held to the same standard as conventional therapies. And if scientific studies haven't been done, then we should insist they are done. We just assume that when one says 'alternative' or 'natural' or 'organic' that it's all good and can't possibly hurt us -- and that's not true.

What inspired you to write this book? You tend to stand up for science in areas where it gets muddied. Is this book continuing that tradition? 

I think all my books are the same, in many ways. They explore that area between science and belief. In previous books it's been the science that supports the safety or effectiveness of vaccines, and the belief that goes against that science, for instance the belief that vaccines cause autism despite all evidence to the contrary. That's always been something that interested me, and the same is true here. People hold onto [alternative medicine] like they would to religion.

The point of my book is that I think there's no such thing as alternative medicine. I think that if medicine works it's not an alternative and if it doesn't work it's not an alternative -- I think it's incumbent upon those people who are non-traditional healers to show us why in some cases their medicines might work.

Your book condemns quackery very strongly, yet you also allow that there is a place for alternative treatments. Why is that?

The book was originally titled Quacks, but I changed it because as I researched and wrote I learned there is something to be said for the placebo response. Acupuncture is probably the best example: there are a number of studies that show that it doesn't matter where you insert the needles, and it even doesn't matter whether you insert the needles -- studies with retractable needles show that acupuncture is of value. And so the question becomes "why?" Why is it that some people who undergo acupuncture clearly benefit, and feel less pain? And as you go further, you learn, for example, that people can learn to release their own endorphins, which are these chemical mediators that can relieve pain. So the whole mind-body connection is true! It's like the line that "the mind can make a heaven of hell and a hell of heaven." There's a therapeutic value to some of these non-conventional interactions.

Now, there's a big cautionary tale in this book, in that there are a number of places in which "alternative healers," if you will, cross the line into quackery -- the healer offers something that is presumed to be safe when it's not, or offers an alternative therapy in place of a conventional therapy that clearly does work, or when they take advantage of their patients financially -- which certainly I think in the autism world has been true. And then lastly there's this promotion of magical thinking -- when alternative medicine works, you don't have to look to magic or to the gods to explain why. Mehmet [Dr.] Oz said on his show recently that there's just some things we can't understand -- I don't think that's true! In the world of science and medicine you can understand it -- the issue is you may not understand it yet. But it's not because it's not understandable.

I really appreciated the story the end of the book, in which Dr. Albert Schweitzer was living and treating patients in Gabon, Africa in the early 20th century. He respected the local "witch doctor," because the witch doctor was fully aware of which patients he himself could treat -- those who mostly needed reassurance, those whose symptoms would resolve naturally -- and those he should send on to Dr. Schweitzer. It that the kind of line we need to be aware of in contemporary times? 

That chapter really represents, to me, coming full circle -- I did change my thinking in some ways in this book. I think that conventional healers, if you will, and conventional medicine brought this on themselves. There are many situations, for example, that we take care of diseases that are self-limited. We give cough and cold preparations that don't do anything but make you drowsy, and when you give them to children you can cause night terrors. So you could argue that giving something like a homeopathic remedy -- which will do nothing -- is certainly safe, certainly won't cause any problems. It's not going to make your cold get better any faster, but thinking that it might can help.

I think there's also no such thing as a mood any more -- everyone has an affective disorder that has to be treated with a pharmaceutical product. And we certainly injudiciously use antibiotics for viral diseases, which are self-limited. So I think in some ways we therapeutize too much with drugs that can be harmful and do have side effects and that are unnecessary. And in that case, one could argue, alternative therapies are going to be safer.

But then we have so many folks thinking anything natural or alternative is good, and anything associated with "Big Pharma" is bad. How do you think this black-and-white mindset develops? Do you think people want to be told what to do, and have decisions made for them? 

I think we want to believe there's something greater than ourselves. And you may be right -- maybe we don't want to think, we want to turn this over to somebody we see as "greater." If you look at the books that really sell well, books written by Deepak Chopra, Mehmet Oz, Andrew Weil -- the position that they all take is one of guru: "I'm going to tell you what to do. I'm not necessarily going to necessarily explain why it's important that this works." They don't say "here are the scientific studies that support whether it works." It's like the line "If you want to feed a man for a day, give him a fish, if you want to feed him for a lifetime, teach him how to fish." I think that these books give people fish and don't tell them where they got the fish from -- that's what seems to sell the best.

Take the New Yorker article on Dr. Mehmet Oz. The thing I thought was striking about that article is that Oz is just a hero, he's almost a Christ-like figure -- people just want to reach out and touch the hem of his coat. He's seen as this guru-like authority, and that's what people like -- they want to be told what to do by someone wise, who has been standing on top of a mountain for years -- I think that's the draw.

The kinds of books I write are never going to be like that. What I try to do is say, "Okay, how would you think about this? How would you reason through this? What kind of data would support one point of view or another?" I'm trying to engage into thinking about it, and I do it by telling a series of stories.

When you describe Suzanne Sommers and Jenny McCarthy shilling for quackery, it's not all that surprising since they are neither doctors nor scientists. But you also describe world-class doctors and scientists like like Mehmet Oz and Linus Pauling promoting alternative therapies, when they should know better! What do you think happens in the latter cases? 

One can only surmise. Linus Pauling was a brilliant, brilliant man, like Einstein; he is the only person ever to win two unshared Nobel prizes. But what happened to him, I think, is that he wasn't willing, at a certain point in his life, to admit that he could be wrong. I think that was his downfall. And so when he promoted megavitamins as being a cure for all things, including cancer -- and data became very clear that that wasn't the case -- he just simply refused to believe it. Which is not where he came from -- he came from rigorous science, rigorous data. But later in life, in his mid 60s, he … lost it.

With Oz, he clearly has an interest in being well known. And maybe, as part of that, he is appealing to what the masses like -- his show reaches millions of people every day. He's a brilliant cardiovascular surgeon, and a full professor at Columbia -- which you can't do without an enormous amount of intelligence. When his show started, I think he saw himself as someone who could show the masses how to think about medicine and science. But very quickly, his show devolved into being about better sex, better skin, living longer, increased energy -- the kinds of things people watching that show wanted to hear. And obviously alternative medicine is a huge industry, and he appealed to that industry. Certainly his wife, who is a Reiki master, I think influences him and is very much involved in his show.

Your book also features people like Rashid Buttar, who sells expensive "cures" for autism via chelation and other proprietary yet non-evidence-based approaches -- and how these people are able to rein in and hoodwink desperate parents with unproven treatments that can really be harmful. Can you talk about the dangers of using a treatment like chelation when it's not medically necessary?

Chelation is an important medical therapy for people who have been burdened with too much in the way of heavy metals, specifically lead and mercury. Chelation generally works by binding them [the heavy metals] and helping the body excrete them more quickly. But chelation doesn't only bind lead and mercury, it also binds elements like calcium which are important for the conduction of the heart, how one's heart beats. There have been a number of people reported by the Centers for Disease Control and Prevention who, when they've received chelation therapy, have essentially had heart attacks and died. It's a dangerous therapy, and when children really do have toxicity from lead or mercury, we do use chelation therapy under strictly controlled conditions -- we're monitoring their heart rhythm, and we're monitoring blood electrolytes so we can make sure we're not going to hurt the patient.

I guess what bugs me about people who claim [chelation] cures autism, and Rashid Buttar is one of those people, is that if it were the case, you'd think you'd be the first one to test it, to prove that it is what you claim it to be! But that's never the way it works. It's always based on testimonials, and people will likely shy away from studies that will prove that their intentions are ill-founded.

Yet Buttar absolutely refuses to test his "miracle anti-autism cream." I don't understand how people can put their faith in people like him. It's amazing to watch autism parents embrace quacks as "anti-heroes," people like Andrew Wakefield, or Mark Geier -- who recently lost his last medical license and can no longer practice medicine. It's really frustrating. Why do you think people support them? 

They successfully appeal to that sense of conspiracy that we all have, which is to say that there are those out there who mean to do us harm -- whether it's the government, or the pharmaceutical industry, or the medical establishment -- and they all use the same sort of appeal: What the government doesn't want you to know. What the pharmaceutical companies won't tell you. But I'm going to tell you, I'm going to be honest with you -- they are often an industry that is incredibly dishonest, because they don't admit their harms or support their claims. But they appeal to that entrez-nous, just-between-us sense of conspiracy. It sells, it has always sold, and it will continue to sell.

People who should know better, rational people, get taken in by this stuff. Do you think it's because it can be so hard to tell the legitimate science from the pseudoscience? Especially when it comes with charismatic guarantees? 

We want the magic medicine! We want to make it all go away. It's so easy to appeal to that, especially for disorders that are life-long -- people want to have that magic thing that makes it all go away. And it's such an easy appeal. I don't really blame the parents so much, because I see their frustration. I really blame the healers, because it's just so unscrupulous. There's a line in The Wizard of Oz, when the Tin Man wants a heart, and so the Wizard gives him this sort of heart-shaped clock, but tells the Tin Man that he doesn't know how lucky he is not to have a heart. And I feel like these alternative healer must not have hearts, because it's such a heartless thing to do.

Your book tells the stories of two Steves and their cancers -- Steve McQueen and Steve Jobs. Can you tell us how they both fell for alternative cancer treatments? 

One had a cancer for which medicine had little to offer, and one had a cancer for which medicine had much to offer. Steve McQueen had a mesothelioma that was fairly advanced. So that he would choose an alternative therapy, arguing -- reasonably -- that conventional therapy hasn't done much for this type of cancer, that you can understand.

That was not Steve Jobs's story. Steve Jobs had pancreatic cancer, but there are different kinds of pancreatic cancer. The one we all think about, the one that for example killed Michael Landon, was adenocarcinoma. But that's not what Steve Jobs had. Steve Jobs had a neuroendocrine tumor, and with early surgery he had close to a 100 percent chance of survival. But he chose not to have the early surgery that no doubt would have saved his life. Instead what he did is decide that he knew better, and he was going to treat himself with acupuncture, he was going to treat himself with bowel cleansings, with fruit and vegetable juices. And ultimately, by the time he finally did have the surgery that would have mattered, his tumor had metastasized and it was too late.

There's a perfect example of alternative medicine at its worst -- you take someone who could have been cured, and you make them much worse.

I live in Silicon Valley, so I see this a lot -- we have all these incredibly intelligent, methodical thinkers who think they understand science -- but they don't. They use case studies to "prove" their points with alternative medicines, without understanding that you can do a case study for any hypothesis you choose, and it proves nothing unless you've replicated the results. So people with engineering or technical science backgrounds are essentially putting their faith in testimonials. What do you think is responsible for this disconnect? 

I think what happens with people like Steve Jobs is that they suffer is the sin of hubris. He's typical of the people you describe in Silicon Valley -- smart, well educated people, usually at least college educated, often college and grad school educated, who generally have professional jobs where they have a fair amount of control. And I think they assume that because they have mastered their field, therefore they can be a master of any field -- even though they don't have the experience or expertise in a particular field. So in the case of Jobs, I think he believed that he could look on the Internet, read people's opinions on his particular cancer, and know as much as his doctor knew. I know he had a number of friends in the Silicon Valley area who pleaded with him not to do what he did. So it wasn't that he didn't hear what the right therapy was -- but he just knew better. He just knew more. You see the same kind of thing in the anti-vaccine community. It's the same kind of thinking, and it's the same kind of background -- it's the sin of hubris. They assume they are independent, and know more than the expert may know.

It's very difficult, particularly in the health care world, for people to call themselves experts, in some ways. You want the patient to be involved, you want them to be active in the decision-making process, and so at some level then you do cede your expertise. You're willing to say, "Let's make this decision together," even though arguably you're the one who should be making the decision. When I was little, my pediatrician (back in the days of house calls) would come over and tell my mother what to do, and she never dreamed of questioning him. Whatever he said, went, he was the doctor.

It isn't that way anymore, for good and bad. I had eye surgery recently, and the ophthalmologist said, "Look, we can do it medically, here's the medical option; we can do it surgically, here's the surgical option, what do you want to do?" Like he's a waiter in a restaurant! I mean, you tell me! You're the expert, you're the one with the experience. But he felt like, in order to have me buy in, he needed me to make the decision.

Your book also discusses the dangers of overusing vitamins, and this whole industry based on selling people vitamins they don't actually need. When can vitamins be dangerous to your health? 

I'd like to make a distinction between a multivitamin and a megavitamin. Vitamins are not something our body makes, but they're something our body needs, and we need to get them from food. Doctors and nutritionists have determined the necessary amounts of vitamins you need. Given how much vitamin supplementation there is in food, people who have a reasonable diet get everything they need.
Now the biggest surprise for me in writing this book -- and that's why the first couple of chapters are devoted to this topic -- is that megavitamins, meaning those with 150 percent or more of the RDA or Recommended Daily Amount -- can be harmful. I would have never predicted that, but study after study shows it. And I actually stopped taking vitamins after I did all this reading, because I became scared.

If you take excess vitamins A, E, betacarotene, and selenium, you definitely shorten your life, increase your risk of heart disease, and increase your risk of cancer. Because what you're doing is shifting the balance of oxidation and anti-oxidation in your body. Although oxidation certainly creates free radicals that can damage cell membranes, and damage DNA, you need oxidation for certain things like recognizing and killing microbes, and recognizing and killing cancer cells. If you actually blunt your oxidation response, it makes perfect sense that you actually could decrease your ability to kill new cancer cells -- which we probably make all the time and kill in our body all the time. That was the surprise for me.

The other surprise was why people don't know that vitamins are an unregulated industry. So I got into the politics of that, and the hearings where basically the industry was able to remove the FDA from regulation, much as the dietary supplement industry has done. People think that this gives them their health care freedom, but all it does is give them freedom from knowing about what they're using.

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A version of this interview was previously published at BlogHer.com.

Friday, December 20, 2013

Keep the Season Bright (Despite Being Light-Sensitive)

Emily Brooks
www.emilybrooks.com

Winter holidays are all about people. And as hard as that is for me as an adult with autism spectrum disorder (ASD) and anxiety disorders, that’s also why I love them! In the hope that other adults or teens with ASD can benefit from my mistakes and experiences, I’ve compiled my tips for dealing with the holidays.

Give When You’re Out of Money and Ideas

If you’re like many adults with ASD, you struggle with employment or finances. Try not to panic if you can’t afford expensive presents. When choosing and making presents for your loved ones, it’s keep in mind that gifts are less about the actual objects and more about showing people you care.

If you have a little money but you aren’t sure where to spend it, search through cheaper stores to find fun items. Used bookstores often have a dollar-book section and websites sell other people’s books and DVDs. Thrift shops, yard sales, stoop sales, and dollar or discount stores offer less expensive toys, clothes, and knick-knacks.

Or do it yourself! Homemade cookies in a plastic bag, collages, cartoons, paintings, music recordings, and poems are thoughtful, personal gifts. Even if you can’t draw a stick figure, you can recycle old magazines into homemade wrapping paper.

“Coupons” representing gifts of time or service -- completing somebody’s chores, walking somebody’s pets, taking somebody to a concert, fixing somebody’s computer, or teaching somebody a skill—are another classic. If you go with coupons, be sure that you follow through. There’s a saying when people fill their plates with twice as much food as they need: “Your eyes are bigger than your stomach.” Akin to that, I’ve had “Your heart is bigger than your brain” moments where I gave spectacular coupons but never ended up acting on them. Also, be sure that your gift isn’t something you’re already expected to do in everyday life.

A gift isn’t about us; it’s about the other person. If I’m unsure about what a relative likes, I ask them or someone who knows them well. With key information such as their favorite animal, color, and hobby, I can choose or make any number of crafty gifts that they will appreciate. My great-aunt loves birds, so this year, I’m painting her a bird on a blank book.

What do you get the person who doesn’t want anything you can afford or make? Be creative! Last Christmas, I gave one of my teenage brothers a charity greeting card. It represented manure to support families in developing nations with their farming needs. I filled the card with jokes and the gift was a success. (A caveat: This would not be an appropriate gift for anyone besides close siblings and friends.)

All bathroom humor aside, giving to charity is a nice gesture, and some sites have charity donation options as little as a couple of bucks. There are options to support wild and domestic animals, education, medical care, disaster relief, human rights, the environment, and disabilities! Try to choose something that aligns with your recipient’s belief system, not your own—a relative who avoids places of worship won’t want a gift of Bibles to kiddies, and Barack Obama’s biggest fan won’t appreciate a donation to a conservative group.

Charities often give you a free greeting card, but check whether you have to print it or if it will arrive via the postal service. To keep stress low, be sure to check the shipping time so your gifts arrive on time. Take travel plans into account. If I’m leaving on the 17th, it doesn’t matter if my gifts will arrive by the 23rd, since I’ll already be gone. I’d prefer to expedite shipping or have it sent directly to my parents’ house and order them not to open the package until I arrive!

Work the Holidays Without Working Yourself into a Dither

At the office, December is the month when interpersonal relationships skyrocket, which can be pretty scary while on the autism spectrum. Add holiday parties and the office politics of greeting-cards to “normal” workplace stress, and I’ll work myself into a dither.

I have a tendency to sometimes overshare, which is disastrous in employment situations. For instance, the nonprofit I work for was talking about donations, and it reminded me of the story of the card that I gave my brother last year, which in turn reminded me of what a good idea it would be to start a charity greeting card program at our company. Instead of simply explaining that we could link donations to holiday cards, though, I launched into the whole story, right down to the fact that the card I gave my brother represented a gift of manure to farmers. My workmates seemed shocked that I brought this up at a meeting and joked about how I must feel about my brother if I “gave him poop for Christmas.” Long story short? Make the long story short. If I had stuck to the point instead of going through all the details, I could’ve saved myself the embarrassment.

It is good etiquette to give a card to your bosses and people who help you out. That doesn’t mean you have to stress yourself out and write one for everyone in your neighborhood, town, school, day program, or company. Ask what holiday the person celebrates, or stick with something non-religious like “season’s greetings”, snowmen, or cute winter animals. Chanukah happened earlier this year than Christmas, but that doesn’t mean you can’t give people belated wishes. Stay appropriate with your greetings. You don’t need to say everything you think, especially if it involves wanting to be BFFs with your awesome coworkers.

Homemade holiday cards warm people’s hearts more than store-bought ones. Be aware of different levels of relationships and what sorts of cards they warrant, though. At a former job, I spent hours making all of my coworkers and bosses personalized cards for several holidays and occasions. I later realized that my team members did not care about me as a person, much less consider me a friend, so I no longer throw all my time into winning every acquaintance over through handmade greeting cards.

Realize you may be required to work holiday parties or events. As a representative of your company, you may need to talk to customers. I think out what to say and practice in advance. A script can help me to get through the initial fear of approaching customers. Also realize that you have to request days off in advance. That said, stand up for your rights -- calmly and respectfully -- if you feel your employer is breaking your contract or overscheduling you.

Don’t wear the same outfit twice because it’s considered bad hygiene. I recently realized that my team members can’t tell that I am wearing clean clothes when I wear the same hoodie every day, so I’ve taken to switching off my sweaters.

Travel When the Sleigh’s Jingle Bells are Too Loud

Transportation gets hellish around the holidays. Plan ahead, leave extra time, and don’t take the last possible train home, because if something doesn’t go right, you’ll be stuck. Making alternate travel plans is important. I learned the hard way that taxi cabs won’t save me from my executive dysfunctions if I am on time but forget to bring cash to pay the driver!

If there is any way possible to reduce your sensory issues on subways, trains, and buses, do so! I have a hard time when the subways and city buses get crowded. With more tourists exploring my city around the holidays, rush hour becomes a nightmare. Because there is too much stimulation, I sometimes panic and get off the subway or bus before my stop. During travel, I’m more sensory-comfortable when I wear noise-cancellation headphones, bring a pompom to fidget with in my pocket or a logic puzzle or word game to play, and remove my jacket before boarding a heated train car.

If you’re like me, you live somewhere that gets chilly in winter, yet you can’t rely on your sensory system to tell you if you’re hot or cold. The other day, I decided not to wear a hat outside. Then it snowed, and I was sorry. Wearing layers and keeping a hat, a scarf, and an umbrella in my messenger bag keeps me prepared for constantly-shifting winter weather.

Interact When Anxiety Flies Higher than Santa’s Reindeer

Family gatherings can provoke anxiety. We usually attend a giant after-Christmas party with dozens of aunts, uncles, and cousins, not to mention dogs and cats and clinking glasses and a piney tree and flashing cameras and television and music. How do I start a conversation with my cousins or end one with someone’s neighbor? What’s in that pudding and do I really want to eat it? And how can I have fun when I feel like hiding in the attic?

Yes, it’s a lot of sensory input and socialization, but the truth is, I love family reunions because I love my extended family. So I bring a bag of things to do -- a book, a journal and pen, a music player and headphones -- for when I need to chill out. If I get too overwhelmed, I take a walk in the cold air. When I take enough breaks to disengage, I can enjoy spending time together with large groups of relatives!

In general, I like to eat food and drink water before and during travel, work, and holiday events. Otherwise, a forgotten stomach can add to my anxiety. Bringing copious amounts of your favorite food to share makes you look like a generous guest while caring for your own needs.

Manage Issues So Decking The Halls is Fun

Managing anxiety is easier when I have more control. Because I get nervous when I don’t know what I’m doing, I use my schedule to plan out my holiday season. In your schedule, don’t just pencil in tough stuff like work or travel. Plan in fun, too! Whether it’s seeing your friend, researching your special interest, treating yourself to cocoa, or taking a hot bath, your version of “fun” belongs in your planner surrounded by smiley faces and exclamation points!

One of the hardest things for me to admit is also the biggest relief: No matter how hard we try, there will be something that goes wrong, and no matter how well we plan in advance, there will be something that throws us off. So give yourself permission to have your meltdown, but afterward, go with the flow! We can’t control what happens, and sometimes we will have to put up with uncomfortable situations.

When confusing and spontaneous things occur this holiday season, don’t blame yourself for having a brain that appreciates the subtleties of structure! Handle it in stride. You are competent and way more adaptable and holiday-savvy than you ever realized. And if the Christmas lights are too bright? Squint, hide under your hat, pull out your sunglasses, or look away. Everything is going to be okay.

Tuesday, November 19, 2013

Raising Cubby: An Interview With John Elder Robison



John Elder Robison's book Raising Cubby is a must-read for unabashed geeks and parents alike. His wry and affectionate memoir describes, in part, what it's like to be a late-diagnosed "Aspergian" raising a son who, it turns out, is also Autistic. But the book's strongest themes are Mr. Robison's obvious delight in parenting, and his determination to help Cubby thrive (which he has) despite friction with the educational, and later legal, systems. We spoke with Mr. Robison about various elements of Raising Cubby, as well as his next steps as an advocate for autism science and research now that he has left the Science and Treatment boards of Autism Speaks.

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One of Raising Cubby's primary themes is Autistic parenting of Autistic children, which is not something we hear a lot about in the media. How common is it, in your opinion, for Autistic kids to have Autistic parents -- whether or not those parents are diagnosed?

With all you read and hear about the hereditary nature of autism, I’m always surprised people ask that question. It’s always “some other family,” where the autistic dad has the autistic kid. Never yours. Or mine.

I can’t tell you how many times I have met a parent – obviously on the spectrum – and had them say something like, “I have no idea where little Zack’s autism came from. Not a trace in our family!”

To look at that more seriously, I think it’s common for autism to be concentrated with subsequent generations. My dad was less autistic than me. My son seems to have more trouble with organization and executive function. So maybe he’s more autistic. Maybe it goes the other way for the next generation. Or maybe not. No one knows.

All we know (from legitimate scientific research, not just my own observation) is that autism in the parents is predictive of autism in the kids, just as having an autistic older son is predictive of younger kids having autism.

When we look at our father’s generation – if they were functional enough to get a job – autism just would not be part of the conversation. Look at me. I had no idea what Asperger’s even was until my son was in second grade. Even then, it took some years for me to learn enough to realize he might have it too.

What you read about in Cubby is not a knowingly autistic dad raising a diagnosed autistic son. You read about a dad who saw his own childhood failures acted out anew in his son, and a dad that tried to help that son based on his own life experience. Autism wasn’t a word we used until much later.

I think that situation is very common, but not talked about either for reasons of ignorance, shame, or something else.

Did the lack of such books -- Autistics parenting Autistics -- influence your decision to write Raising Cubby?

I just felt it was time for a father’s story. There are lots of mom memoirs but very few firsthand tales of fatherhood.

I never really thought of Cubby as an “autism book.” Now that I see how different my style of child rearing was from the average dad I just thought I might have something useful to say to anyone raising a kid. After all, every dad wonders what to do with his kid on the weekend. Every parent wonders what to say when their kid says, “Where did I come from??  I answer all those things, and more.

Do you have any specific advice for your fellow Autistic parents, in terms of dealing with neurotypical parents in social and other scenarios (school etc.)?

When Cubby was little I sometimes had occasion to talk to parents of other kids.  That was difficult for me because engaging them made me feel so different. Many of those parents were focused on “normal” jobs, where they worked a regular schedule, had vacations, and – most notably – got a weekly paycheck. I was a self-employed car mechanic with none of that structure. I always felt that they looked at me as some kind of alien creature.

A few years later I began meeting people at day care, and then at Cubby’s schools. Day care was ok, because it felt like a big playpen. Montessori School felt much the same way. South Hadley public school felt awful – a rigid, strict place with authoritative teachers who did nothing to garner respect from me.

I was not very successful at engaging either the parent or teacher communities when Cubby was little. I did not develop the ability to interact productively with either group until later, when I learned about autism and how it made me different. In those first years, I had no idea what those people expected of either Cubby or me.

The whole time Cubby was little I watched other families and gathered the sneaking suspicion that there was a “normal way” to run a family, and my way. Every time I considered the “normal way” it just seemed too alien to my way of being. Yet I wanted to fit in. I just never figured out how.

Now, I look back on those years with the benefit of considerable insight into autism and human behavior. There are many things I could have done different, to fit in better and possibly help Cubby better too. 

As for the final part of your question – I don’t think other parents played a big role in raising my son.  In the early years I was never sufficiently connected to other parents for that to happen. Do “other parents” play a big role for neurotypical dads? I have no idea. When Raising Cubby, I looked at each problem, studied printed reference manuals, and made my best decisions to move forward.  His appearance today proves my choices were wise and good.

You seem like a really fabulous dad, with your excursions to the train yards and factories, and driving to those places in such fantastic cars. Was Cubby aware that most kids do not get to go on such adventures? Does he get nostalgic about those outings?

Some dads take their kids to train yards to drive locomotives, while other dads chain their kids up in the basement while they go out and party. In both cases, the life they live is all each kid knows.

While I can imagine the possible range of activities a parent and kid might engage in, I have no idea what a “typical dad” does. I based my decisions on what to do with Cubby on things that would be interesting to me. I assumed that he would like many of the same things I liked, and that proved to be true. At least until he got old enough to express objections.

Even then, he remembered and learned from what I told him. For example, when he was five, I warned him about the monsters that live under the storm drain grates, out in the street. I told him to drop an occasional bit of food down the drain, just to be safe. And it worked. None of the kids on our street got eaten by monsters. Fifteen years later, I was proud to see Cubby talking to a little boy, out by the storm drains. “Drop some of your hot dog down the drain,” he said, “to feed the monsters under the road.” Alarmed and enlightened, the kid complied and The Knowledge was passed on to a younger generation.

I also have no idea if he gets nostalgic. At age 23 few kids are ready to give their parents credit for all the fun things they did, and all the wonderful knowledge Dad imparted. You’d be better off asking him that in 20 years.

One of your more striking observations was the need to consider the atypical developmental trajectory of some Autistic kids and their skills -- specifically with Cubby's reading. What advice would you give to parents frustrated or worried about their Autistic kids "catching up"?

Well, it’s obvious that Cubby caught up. Look at him now.  Look at old videos of me, and look at me now. That shows that we can keep growing and developing – and that’s not just getting fatter – even in our fifties. Look at Temple [Grandin] – she shows the same continued growth.

There is no telling how far any particular kid will go, or how soon. Change is perpetual. I’m a big believer in the power of early intervention to help kids change, but in Cubby’s case he changed and grew without any sophisticated costly therapies. So did I. Other kids get hundreds of thousands of dollars in therapy and hardly change at all.  I wish I knew how to predict what would work, for whom, and how soon.

If I did I would make a fortune at the off track betting parlor and I would be relaxing on an island somewhere. Hell, I would own the island.
The author, holding forth.
Photo: Shannon Des Roches Rosa

Cubby's focused interest and expertise in chemistry and explosives led to your family being dragged into an extended legal battle. From an outsider's perspective, it seemed like the prosecutor's unwillingness to understand Cubby's autism and how it affected intent was a significant barrier to speedy justice. Is there anything you might have done differently to help the prosecution understand autism, in hindsight?

No, because bringing autism into the trial would have been like conceding guilt, but asking to be excused because of autism. That was not the case with Cubby.  The issue here was a morally bankrupt prosecutor who saw a chance to advance her career by convicting a geeky kid who seemed like an easy target. She chose major felony charges because they had (in her dreams) national news value. Not because they fit the actions.

To convict a person of the felony of malicious explosion, the prosecutor must prove malice (intent to harm) and actual destruction of property (a car, a house.) The state totally failed on both counts.  Autism played no part in our trial strategy. Cubby was not guilty of the offences charged.

As one of my state trooper friends observed – we won it, fair and square.

Having said that, I am aware that we beat long odds and innocence does not always carry the day.  It’s truly every parent’s nightmare, to be caught in a system like that.

You write about being disabled in Raising Cubby, whereas you had previously stated that you did not consider yourself disabled. Can you talk about how your thinking on the matter has changed?

I didn’t consider myself disabled as a kid but I did think I was “less than other people.” How else would I be expected to feel, treated as I was with no explanation? People who read Look Me in the Eye say the early chapters are a portrait of a disabled child though I never felt that way myself.

I don’t think I am disabled in the context of my day-to-day life now. But that is because I’ve constructed a world where I can be successful. I don’t know how to work in a big company, so I’m self-employed. My people skills are weak, but I have a business where I talk to machines. It’s hard for me to say the right thing in one on one conversation, but I build goodwill by letting my written words make the introduction. In those and a thousand other ways I shield myself from disability.

Put me in a different life context and I might be very disabled indeed. Disability is often a result of the interaction between our abilities (or lack thereof) and the situation in which we find ourselves. People with autism often get less disabled with age as we accumulate a bigger and bigger base of adaptive strategies to help us cope with different situations.

I talk in the book about certain things I can’t do, and when doing those things, I do feel disabled, and my performance is pretty poor. That might lead an observer to describe me as disabled in certain settings. But there are other situations where I do really well and I try to be in them most of the time.

Ability and disability varied by the kind of task (sorting, calculating, imagining a story), the setting (noisy, quiet, bright, dark, etc.) and many other factors. Each of us has things we do best and things we don’t do very well. If the “not very wells” fall below a minimum threshold for our age you might reasonably call those traits of disability. If a person failed in work, personal life, or some other area because of those limitations he could be called disabled. That has certainly happened to me more than once but luckily its not happening right now.

I try really hard to keep succeeding but I know the line between gift and disability is often razor thin.

I don’t think this represents “changed thinking” on my part so much as it represents more evolved expression.

You recently parted ways with Autism Speaks, stating that Autistics " ...are not problems for our parents or society, or genes to be eliminated. We are people." As your involvement with AS was focused on autism science and research, will you be less able to advocate in those areas? Or do you have other science and research connections that will allow you to continue that work on behalf of the Autism communities?

The Federal government spends more than ten dollars for every dollar Autism Speaks spends on science and research. I’m still reviewing proposed science there; I can volunteer for more if I want.  My service on government committees like IACC has given me a better platform to advocate for the kinds of therapies that will be truly beneficial to our population, at all levels.

In the years since I joined the AS Science Board I have also joined many other significant initiatives.  For example, I’ve volunteered for the CSESA advisory board. That’s a Dept. of Education funded project to improve outcomes of high school students on the spectrum. I’ve joined the steering committee for the World Health Organization’s ICF Autism Core Sets Project. I’m still very involved in science and research policy.

My new appointment as Neurodiversity Scholar in Residence at William and Mary is an opportunity to bring progressive thinking about autism and disability to a top-tier college. From there, graduating students can carry that message far and wide. I’ve also started a school right here in my auto complex for high school students with developmental challenges – our TCS Automotive Program. That’s perhaps the greatest of opportunities in terms of serving the community

Woof

Friday, November 1, 2013

The Beginnings of Autistic Speaking Day - Revisited

Today is Autistics Speaking Day. Why? This is why. From our archives.

Corina Becker
autisticsspeakingday.blogspot.com

It started sometime mid-October 2010.  I was browsing the internet, following links off of Twitter to new places I hadn’t been, when something caught my eye. A new autism awareness campaign, it advertised itself as a way to raise money for charities around the world and for people to understand autism better. Curious, and ignoring the growing dread in the pit of my stomach, I clicked the link and took a look. 

What I found was Communication Shutdown, an event started by a group in Australia that promoted people to refrain from going on social networking sites such as Facebook and Twitter for one day, November 1st. It said that it would help people to understand the communication difficulties that people with autism struggle with, and this will help people to know autism better. Also, for a $5 donation, people would get a charitable app to send out tweets and status updates throughout the day on why people were being silent for the day, and the money would go to certain autism charities in people’s own countries.

Let me just tell you, as an Autistic person who uses Twitter extensively for pretty much everything, I was not impressed. As I wrote in my post on October 15th, Real Communication Shutdown, there are many issues with the campaign, beginning with the sensory-overload design of the website, and going on to the basic assumptions made by the organizers. To quote myself:
"... it relies on the assumption that everyone participating uses Twitter and Facebook to communicate.  While I realize that these sites make communication easier, it is not the only way in which NTs can communicate online, and thus subverts the entire exercise of the campaign.
"I was recently asked by a person on Twitter to participate, and I responded that there wasn't much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating. I pointed out to this person that Twitter and Facebook are two of the sites that actually allow Autistics to communicate and connect with others in the community, so I will not be disappearing from the Internet, as it is my lifeline. I also remarked that this is a flawed simulation, since a non-Autistic person still have the capability to text on their phones, and speak verbally, and so would not be totally comprehending the true reality of Autistic disability."
I went on to suggest that a better way for Communication Shutdown participants to simulate the full extent of the possible communication difficulties Autistic people face: a complete and utter communication disconnection. No internet, no phones, no texting, no note writing, no speaking.  Nothing.

Do not communicate at all, and maybe they'll understand the frustration that causes Autistics to lash out, to hit, bite, scream, and all the other "bad" behaviours that just get blamed on autism. That's what I thought, but then I realized the simulation was flawed. Even if people were to resist the temptations to cheat, it would be too easy for people in an uncontrolled environment to come to the wrong conclusions. Without someone controlling conditions in the simulation, and then providing a structure for feedback and to guide responses towards the purpose of the simulation, it would fail. A simulation, in all honestly, isn't to convey the reality of others perfectly; it's impossible to do so due to the wide spectrum of unique people on the spectrum specifically and in humanity in general. A simulation is to present a piece of a reality in a way that another person who does not normally experience that reality can in part understand the reality of others.

Therefore, as a large-scale simulation, Communication Shutdown will be a failure.  Never mind that in this tech-savy, media-driven generation, there will be an enormous pressure to at least sign in and message to people privately. In fact, given how addicted youth seem to be to their electronic devices, it was basically guarenteed that there would be participants who still signed in during Communication Shutdown.

Knowing this, I impulsively proposed that non-Autistic people be silent and that Autistic people be as loud as possible on social networking sites. I called for "Real Autism Awareness," for Autistic people to:

use this day to flood every social networking site we know with our accounts, our experiences, what it feels like to be Autistic. Every sensory pain, every communication frustration, every account of being bullied, every wondrous moment, every peaceful calm, every instant of understanding and joy.  Let them hear our voices and take back the autism community.

In my next post, I realized other Autistic people felt the same way as me, and I took it one step further from a proposed alternative, to an actual alternative. Whimsically calling it Autistic Speaking Day, I expanded on the purpose of what would come to be known as ASDay: to acknowledge our difficulties while sharing our strengths, passions, and interests, with the intent of raising autism awareness and battling negative stereotypes about autism.

I published the post on October 18, and then started to tweet links to it at a fairly consistent rate. To be honest, I did not expect that much would come from it. I was prepared to write a short post on my blog, linking to my past post and not saying much else other than I was sitting on Twitter, sending out tweets about my life as an Autistic. I really did not expect the responses I got.

I got some responses from someone running Communication Shutdown, but her comments did not satisfy me to call off my counter-event.  In fact, it made me angry and I began to be more aggressive with my promotion of ASDay.  I got some criticisms from other people as well, which I addressed later in a blog post, especially after I noticed ASDay gaining a lot of attention. It seemed that some people were unable to comprehend that 1) ASDay wasn't just about countering Communication Shutdown, but had the purpose of promoting Autism Awareness in our own way; 2) that we weren't asking people to donate money to anything; 3) that even people with the right intentions can make mistakes and those intentions do not excuse them from criticism and protest from the Autistic community; and 4) that all Autistics of all ages and "ability"  levels can participate..

But what amazed me was the flood of support, agreement and pledges to contribute.

Apparently, I wasn't the only one who felt there should be an opposite of Communication Shutdown.  Browsing other blogs, I became aware of other similar events.  I decided that it didn't matter what each of us were calling it, but that we were all doing the same thing, with the same goals in mind.  So I thought we might as well work together, and agreed to dedicate a few hours here and there with the other campaigns online. I still thought that ASDay would just be me and maybe a few others, tweeting obsessively throughout the day.

Until Kathryn Bjornstad commented on my blog with the Facebook link, I had no idea how big my idea had gotten. After clicking on the link, I think I just sat there for at least half an hour, stunned at how many people had already joined up to participate. I don't think I can accurately describe the feelings of jubilance I felt, and success. In a way, just by having so many people say "yes, I will not be quiet, I will speak up" made ASDay a smashing success before it even began.

It was then I started to realize what I had started. I felt electrified with energy and a rush of excitement. I remember a point where I thought "It's just not me, so now I can't slack off." And so with my next entry, I started to get to work, making logos to spread around and getting involved with the Facebook group. Someone made a twibbon of it, and another person suggested the hashtag #ASDay when I realized that my original tag #AutisticsSpeakingDay was really too long. I also addressed the criticisms, which I mentioned above.

As November 1st got closer and closer, I became more and more busy. Both Kathryn and I were contacted by news networks, including ABC News (Australia), 4ZzZFM News, Examiner.com, and the Washington Times for interviews through email or just to have permission to quote what we've already wrote. I was also asked by Steve Silberman, investigative reporter for Wired magazine, to write a guest post for ASDay on his personal blog. Between this and moderating the ASDay pages, I ended up not having time to write a detailed post for ASDay and simply picked out what I thought were some of my best blog posts.

I spent the day on Twitter, something like twenty hours straight, talking to people through tweetchat on the CoffeeKlatch, or on my own. People would contact me with a blog post they had done, and I'd share it on Facebook for the large list Kathryn compiled. I tried to read them all.  The sheer amount of people openly talking and sharing information, and the responses throughout the day still amaze me. The goal of ASDay was to get people to learn about autism directly from Autistic people, and it was working.

From what we could track, we had over 500 participants from all over the world from as far as Indonesia and Turkey, over 80 blog posts, and we were messaging blog posts to over 2000 people who were invited to the event on Facebook alone.  We have no clue how far the event reached just by "word of mouth" over the Internet.

As ASDay started to come to an end, we started getting an incredible about of feedback. I was very pleased by the responses from parents, family and professions about what they had learned from the day. As Jeanne Holverstott put it in a lovely post,
"#ASDay became more than just another day. It was a large-scale dialogue about daily struggles, successes, and challenges that we didn’t know about, couldn’t guess about, and, perhaps, never dreamed of. Lifetimes of day-to-day experiences congealed to document what it’s like to be a person with an autism spectrum disorder. #ASDay was a living, breathing, and talking personal and community history book with pages filled by unsung heroes with powerful stories."
We also started getting responses from Autistic people. The thanks and success for putting ASDay together I defer; the success of Autistics Speaking Day is not mine alone. It is the combined efforts of everyone involved, even in the smallest of tasks. It is a beautiful expression of community.

However, that is not why we immediately decided to run ASDay again. There was another result of ASDay that we hadn't quite anticipated, but was definitely welcome: empowerment.

Throughout the blog posts and feedback responses, we realized how much ASDay was an inspiration for a lot of Autistic people. There have been people who have started blogging, and continued blogging, from this event alone. Other Autistics who already blog felt encouraged to be open about their diagnosis and blog regularly about their lives as Autistic people. On several accounts, Autistic youths have felt empowered to start getting involved with their local autism organizations and become active in the autism/Autistic communities.

When I read these responses, I cried. I still cry when I think about them. I'm awestruck at how ASDay impacted people with such a resounding effect. Through these responses, I've realized the value that ASDay had to other people. For me, it was just another awareness campaign, one of the many I've participated in since becoming an active member of the Autistic community.  For others, this was the starting point for their own journeys and inauguration into the community as Autistic members.

Even though we started as an awareness campaign, ASDay has become so much more. It is a chance for involvement and support for many Autistic members, it is a source of empowerment, to be able to speak and express oneself and know for sure that there are people listening. It is a chance for communication within our communities, to share information, our experiences and our lives.

With this in mind, Kathryn and I decided to continue running ASDay each year, for as long as there are Autistic people who want it to keep going. This year we decided to plan a little more ahead than the impulsive rush we did last year. We're using social media and word of mouth again as our primary means of organization and advertisement. We opened up a blog so that we can compile all contributing blogs into one place, as well as a new Facebook page and a Twitter account.

We may not be a counter-event to Communication Shutdown anymore, but the rest of our goals for ASDay have remain the same: To raise not only autism awareness, but also acceptance, and to battle negative stereotypes about autism by advocating for the inclusion of Autistic people in the community, and offer a forum to broadcast the messages of Autistic people and non-Autistic allies to as many people as possible. We welcome Autistics of all ages and "functioning" to participate in sharing their stories and messages, in whatever form is the most comfortable to express. We also welcome our non-Autistic allies to share in this day of respectful community and communication.

We hope that all of you will join us on November 1st!

Friday, October 18, 2013

Why It Hurts Your Child to Be an Autism Cure Chaser

Susan Walton

This week in a local parent forum, a member spoke up about MMS, a “treatment” that TPGA has examined (with horror) in the past. (See TPGA science editor Emily Willingham’s Dangerous Interventions: MMS and Autism.) A TPGA Editor was present during the MMS forum discussion and suggested we are reprint the conversation, with permission from that forum's Moderator.

Maybe there should be a 12 step program for autism parents who have fallen for misguided and misdirected "hope."

----

I am the father of a 5.5 year old ASD kid. He was diagnosed with autism three years ago. For the last three years, we tried many "treatments" including Andy Cutler protocol [chelation], multi-vitamins, Methyl-B12 shots, GFCFSF diets and various therapies. At one point in time, we were giving around 35 supplements and medicines per day. We saw some improvements for each of the above therapies. But they were MINOR.

My wife wanted to try MMS 8 months ago. But being a pessimist about autism therapies, I did not allow her to do MMS. I told her that it was too "dangerous." But four months ago, we decided to give it a try. The results are truly remarkable. My son is behaving like a normal kid. There are many improvements. We stopped all those supplements. Just MMS. He is doing great.

Being an Engineer, I tried to understand how MMS works on ASD kids. But after seeing the results, I don’t think of that any more. I have confidence now that we can completely recover my son soon. Before MMS, I had little hope.


-Now Hopeful Dad



Dear Now Hopeful Dad,

As an observer of the Cure Community over the last decade or so, I have seen a fair amount of things come and go. Some so-called treatments disappear, others just fall lower down in the noise level. But the most damaging of all the interventions I see touted is the one that starts, "Never Give Up Hope" and continues with "Try Everything."

If what you hope for is a cure, then my advice is to give that shit up. It is one of the most addicting and dangerous drugs I've ever seen. It leaves other dependencies in the dust. Parents who get their first high off it chase that feeling for years to come. They crash back to earth time and time again, but it doesn't matter. The euphoria it produced the first few times and the lure it dangles is so powerful that it trumps everything else.

Of course there are dealers out there who are glad to help. Like every other drug, it is trailed by both business and other junkies at every step. Fellow chasers encourage new parents to go farther, try harder, dig deeper. They trade stories of their best jags and convince new parents to try ever more bizarre things. The sad part is they think they are helping.

I don't know what has happened with your five year old son in the last few months. I do know that developmental bursts happen all the time. Natural growth and forward momentum and love and therapy all play a role. I also know that the time correlation between when you started using bleach on your child and the start of a period of improvement is so powerful that anything I say will be lost. The rush that comes from thinking your child may not have to have it so hard after all, that autism (and all that comes with it) is in your rear view mirror is an unmatchable high. What can I say to compete with that?

I will say it anyway, though. Our children need us to love them the way they are. We can find paths to the best possible lives for them. We do endless and indeed painful trial and error to find the right tools to help them access the world in a way that works. This may not feel as rapturous as the promise of a cure, but long term it is the real deal.

When a child is pronounced cured or “completely recovered” I have to wonder, why are their parents still in this group? Over the years I have heard from a variety of parents who tell me they have found "It." But they are still here because "It" wasn't "It" after all.

For me, "It" is education. How can I tailor my son's education to teach him what he needs to know, in a way he can access the knowledge? How can I teach others to be helpful to him in that effort? How can I help my community and the world to accept him, autism and all? And how can I educate myself to be his ally and his champion, but to step back when the path to excess beckons?

I'm not a Cure Chaser. You'll find plenty of those on the Internet, but I'm a Coper. And a mom in love. My son is brave, fun, surprising, and amazing as is. I bet yours is too.

-Susan Walton

Monday, October 14, 2013

Disability-Friendly Museum Days Are the Best!

Shannon Des Roches Rosa

I've written about disability-friendly museum days before -- at the San Jose Children's Discovery Museum, Palo Alto Junior Museum and Zoo, and San Francisco's Exploratorium, specifically -- and how awesome they are. I will be frank: my son does not go to children's museums except for during these special events in which the museums are open to a limited number of guests with disabilities and their families, the staff are trained to accommodate, there are quiet rooms to retreat to, social stories are prepared ahead of time to introduce attendees to the space, and he can focus on fun.

So I am grateful to San Mateo's CuriOdyssey (formerly Coyote Point Museum) for hosting a Super Families event last weekend, and hope they will continue to host these events periodically. My son, his little sister, and her friend got to have the best time ever. I'll let our event pictures speak for themselves, below.

Does your area have disability friendly museum days? If they don't, and you want to encourage them, send the staff our way -- we can put them in touch with some of the wonderful folks who have orchestrated these events.

And for museums and science centers that are not just for kids, well, we have some easy ideas about how to make such places more disability-friendly, too. :)

Enjoying exploring caves.
Making the biggest bubbles.
Free water and sand play is THE BEST.
Very very friendly river otters!
And ... quiet places to chill with one's iPad.
Always helpful.

Wednesday, October 9, 2013

Fish Out of Water

Lydia Wayman
autisticspeaks.wordpress.com

I take in a gulp of air and shut my eyes tight before I plunge beneath the surface.

One, two, three…

It starts to feel like my brain is tingling from the inside.

Four, five, six…

I’m not counting in seconds, not in minutes, but in hours.

Seven, eight, nine…

I search for anyone, anything who will ground me through my ever-increasing internal chaos.

Ten!

When given the cue, I cannot break the surface fast enough, gasping for breath. I’ve done this thousands of times, and yet, after twenty-five years of daily descents, I am no more sure that I will survive the next one.

----


I’m really not a writer.  Writers have readers.  I write because it’s the only way for me to get from one day to the next without semi-spontaneous internal combustion taking effect.

I’m not a writer.  I’m a processor of the world, an organizer of experience, and, certainly, a weaver of words. Much like typical people have no need of the world to tune into their every thought as they learn and grow by connecting this neuron to that one and forming new pathways, it matters little to me whether others read the ways in which I develop my sense of myself and the world.

My memory goes back to before my first birthday. Prior to sometime much later, though, my memories are only sensory; I remember smells, tastes, and sounds … the painting on the end of my crib, my sister’s writing on the chalkboard, and smell of the air sanitizer at my daycare … but I really cannot remember almost any my thoughts and opinions. Without a way of processing the world and my place in it, I had no means of forming these memories.

I was an early and voracious reader. I had sight words in my second year and devoured The Hobbit in third grade. Yet, my language development was uneven; I asked my mom several years ago when I began to ask “how are you?” to other people, and she responded, “Lyd, we’re still waiting.”

I taught myself to type in fourth grade and took to instant messaging much like I take to cats and pink and Diet Mountain Dew. In middle and high school, I would form rather close friendships with kids in my grade online, but when we met in the hall or in class, I was absolutely silent. I didn’t understand why I had so much language ability … and yet, simple conversation evaded me entirely. I could lecture, for certain, and at home, my mom was either asking me to say something, anything, to anyone, or, conversely, for-the-love-of-all-that-is-good please stop chattering. My sister (to this day) answers my every conversational volley with either, “I can’t hear you! Speak up!” or, “Geez, Lydia, I’m right here!”

I kept no friends from high school and made none in college until my senior year. I met Leigh in late August, and one rainy evening in mid-September during which I had dragged her to the gym with me, she asked, “Hey, have you heard of Asperger’s?”

“Yeah,” I said. “We learned about it in one of my education classes; I think I have it.”

“Um, I know you do.”

Several months later, I met with a clinical psychologist who had oddly-perfect teeth and a heavily-gelled comb over. I left with a diagnosis of Autism Spectrum Disorder. It was January 7, 2009. I was 21.

My final semester of college began just a week later, and with it, so did the crumbling of my world. I had pushed so hard and tried to just be normal for so long that I simply, one day, could not do it another minute. The social and communicative demands of student teaching put so much stress on my atypical neurology that I became violently ill. After two weeks, I dropped student teaching in order to take an “alternative assignment” with more support, but upon doing so, I had to forego any hopes of a teaching license. My plans for the future had burst.

I stumbled and staggered through the months until graduation, every moment ready to fall over the edge and into total burnout. Rather than all at once, it came on gradually, and by the time I went home in May of 2009, I was a vacuum. Everything went in; I heard, I thought, I felt. Nothing, nothing came out.

Nothing came out … unless my hands were on the keyboard. It became my lifeline. I used it to communicate anything more complicated than simple questions-and-answers for over two years.  During that time, I also began to blog, and I was surprised when more than a few parents of children with autism were interested in my writing. I was able to articulate why autistic people do the things we do that strike typical people as downright odd. “Just as a newsflash,” I would say, “I think you’re odd.”

During the last two years, I have read dozens of books about autism and connected with others (mostly online, of course) who have it. As I learned how my mind worked and how I could make myself more comfortable in this world, I slowly came out of my shadowed state. My typing, mostly in the forms of blog posts but also in books comprised of short essays, emails, conversations, and texts, has been the lifeline that connects my brain to this world.  Every moment I don’t spend at my computer is like holding my breath under water.

I take in a gulp of air and shut my eyes tight before I go out for the day.

One, two, three…

I run errands with my mom.  Grocery store, Target, post office.

Four, five, six

Doctor appointment and drop off the dry-cleaning.

Seven, eight, nine…

The light, the noise is so overwhelming, it’s become unintelligible.

Ten!

Breathe.  I’m settled in my comfortable spot with my favorite blanket, with my fingers at home on their keys.

----

Previously published at autisticspeaks.wordpress.com.

Friday, October 4, 2013

Autistics, Media, and Misrepresentation

Paula Durbin-Westby is an Autistic advocate and an autism parent. She and her son recently appeared in the PBS P.O.V. documentary Neurotypical, a film meant to challenge public perceptions of Autistic people as well as allow Autistics to represent themselves. Paula’s portrayal in the final version of the film, however, was not at all what she was expecting. We talked with her about the distress of being publicly misrepresented as an Autistic, as well as her recommendations for filmmakers and other media types hoping to accurately portray Autistic experiences.

What was your goal in agreeing to be interviewed for Neurotypical?

My point was to counter pernicious media assertions that Autistics (and other people with neurobiological disabilities) are incapable of parenting and relationships. Unfortunately, I think the film’s portrayal of me has actually reinforced some of those assertions. 
I don’t have any problem with being shown as disabled, or as Autistic. I would be perfectly happy looking, sounding, and being disabled. Unfortunately, my disability is not shown in any substantive way, except for the fact that I am wearing headphones and I rock a little bit. 
I do have a problem with the focus on my marriage being so out of proportion to the amount of filming done, the things we had talked about, and the interests and goals I had brought to the film making process.
Ironically, I had actually asked the filmmaker to show some not-so-great things about autism, quipping “maybe an argument,” but I had no idea that my relationship problems would become the focus of my part in the film and that my marriage would be used as a vehicle for hooking interest in it. 
I had told the filmmaker, in an email the night before the filming with my husband, that I did not want to talk about my finances, though I ended up being the one to bring them up when my husband tried to blame our relationship problems on my diagnosis). Part of why I trailed off and did not comment after a while was that I did not want to continue the conversation or the filming of it.
I also thought that, if anything, those topics would be a little bit of my part, given that the filmmaker had told me that I would have a somewhat significant part in the film – and as my image figures significantly in its marketing materials. I never expected my part to be so hyperfocused on the marriage.
What are some of your other concerns about the way you’ve been featured in Neurotypical?
This film is not really about my life; it is the filmmaker’s creation. Since it does not have aspects of my life that I want in the film, since it implies things about my life that are not true for me, it is not about me. It’s not my story. It’s not about my life as an Autistic person. It is about the filmmaker’s vision for the film itself. He has been clear about that through both interviews with him as a filmmaker and the marketing material -- I have been assigned a storyline by the filmmaker: 
  • “Newly diagnosed” (not true at the time of the filming) 
  •  “Coming to terms with her diagnosis” (not true at the time of the filming)
  • “Disintegrating marriage,” (true, but featured disproportionately)
  • Bubblydaydreamer forced to deal with financial anxiety” (where on earth do they get “bubbly daydreamer?!” and why do they use it in marketing material?)
  • The “success of my marriage” hinging on the agenda-laden question of whether or not Autistics and neurotypicals can have fulfilling relationships” rather than also including the facts and my point of view about the finances (which the filmmaker did have access to, via my emails to him, and through what I actually said in the film).
  • Using what my husband said as “my” story! He actually has more words than I do in the movie, the marketing materials, and the “lesson plan” questions. The “lesson plan” is materials based on the film that are to be used in middle schools, high schools, library discussions, etc. 
So, my part of the film is not the “point of view of Autistics” after all. All of that storyline about the marriage was made up by the filmmaker and PBS, and I think made all the more harmful by using just that bit of the actual footage.

And why does Jonathan Mooney, who wrote “The Short Bus,” who is not even Autistic, get to talk over me in the film? Why don’t I get to talk about neurodiversity and my own neurology? I realize that it’s a film technique, a voiceover thing, but I really do not appreciate it, given the fact that I don’t, for example, do a voiceover over someone else. 
Mooney is held up as the expert, whereas my own voice about neurodiversity and disability rights activism is effectively erased. So the film does me no good in the “disability job market sphere,” either. The only people who know what a good public speaker I am at this point are people at Autreat and a few other venues at which I have given presentations. I will say that the hosts at various places I have spoken have commented that I am a good speaker and engage well with the audience. 
Also, in the film I don’t talk about autism. I talk about my diagnosis, which is something I am not interested in talking about, but which is the one thing that non-autistics always want to know, so they filmed me explaining that to them. “When did I get a diagnosis, am I self-diagnosed?” Autistics meeting each other or getting to know each other typically don’t even ask about a diagnosis. It’s not that interesting, actually. Talking about when one got a diagnosis is not the same as talking about autism.
It did not help after all to mention that my problems with my husband were financial, because now film viewers get to weigh in on whether or not they believe me. An autism expert was invited to an online screening by PBS. This is what she had to say: 
“This scene is interesting in that once autism is labeled, they have an ahha [sic] moment, the person isn't just odd. And with this couple it took a turn for the worse.”
Nothing I have ever said about my financial situation has been a lie. But now, everyone who sees the film gets to decide whether or not my relationship issues were due to autism or finances. I am trying to raise a child and pay a steep debt, and it only damages my situation further for people to be commenting about it. In order to make sense of what I mean by steep debt, the cost to me is about $280 per week for the next 14 years, and I will have been paying that for a total of 21 years. This is $280 a week for a disabled person who works two part-time jobs with no benefits.

What would you change about your participation in the film?
In earlier correspondence with the filmmaker’s production team, I got responses saying they were not going make some of the changes I had requested at that time, so I stopped corresponding with them about the film. I stopped trying to get the filmmaker to take out the blurbs about my marriage because I did not think I could -- which was obviously a mistake. So the misinformation on the filmmaker’s website went on for several years, and also appeared in reviews, which I did not catch until I started looking for them. Certainly no one sent those to me; I think they might have been hoping I would not notice them.
PBS and the filmmaker finally did make some of the changes I requested. But this was only after I got through to someone at PBS, only six days before the film aired, after a couple of years of the film’s being marketed using damaging material.
The material PBS finally removed was exceptionally objectionable. It directly implied autism in the “success” of relationships with non-autistics. The film was aired on July 29. On July 22, some of that egregious material still remained, and I had to contact PBS and the filmmaker several times to get it all removed.
After the film aired, I continued to look for mentions of it online. I found that on the resources page, PBS had listed an anti-Autistic group, and had NOT listed the Autistic Self Advocacy Network (ASAN), www.autisticadvocacy.org. I wrote the following to PBS:
“One of the reasons I wanted to participate in this film in the first place was to promote the Autistic Self Advocacy Network, because I was working extensively with the organization at that time. It is a bit odd that this important organization did not make it onto your list of resources. I guess I should not be surprised, but I am. Ari Ne'eman, the founder of ASAN, has been on the Interagency Autism Coordinating Committee (IACC) and was the first Autistic person to be appointed to the National Council on Disability. People need to know our history, and you can't talk about our history without talking about ASAN.”
I do want to say that PBS and the filmmaker have worked with me, but it feels like too little, too late, plus their link fact-checking has been sloppy or nonexistent, so I am the one who constantly searches to find the bad stuff and report it to them. I know that they did not want to make me uncomfortable, but the film was already out there, with the marketing, and the links, and they were not able to think through or understand the negative impact it would have on me.
Some people might think I am insisting on too much, but as long as I have to be in the film and have my image all over the place, I am going to have a say in what they put on their site.
How has being mischaracterized affected you personally?
Heightened anxiety and stress. Some people might think I am this stressed out because, well, Autistic people just get stressed out. But my anxiety about this film goes FAR beyond my typical level of stress. It is almost as bad as the stress I had when my husband pressured me into refinancing the house when I did not want to. 
I experienced anxiety when I first saw the PBS promotional material that singled out my husband’s comment about “Where’s the accountability?” and did not include anything I said, the Autistic person’s point of view that the film purports to show. The marketing material has constantly focused on my husband’s feelings about my diagnosis, claiming that I am unaccountable, that I have a new sense of “entitlement” that threatens the marriage, and other unsubstantiated misinformation. 
I experienced a great deal of anxiety when I saw an “interview” I had not actually done, and finally figured out how it happened. I did not interview at all, but something I sent to the filmmaker was copied and pasted into an interview I knew nothing about. The interviewer claims she “got a chance to speak with me” but I never did communicate with her at all, nor was I asked by anyone to be interviewed. 
And, I experienced such anxiety that I stayed up for 27 hours the day I found that PBS had linked me to one of the anti-Autistic groups I have spent significant time countering over the years. PBS subsequently removed the link.
This is not my typical anxiety, which is at a much lower level (although fairly constant because of the permanent money problems). 
If I start thinking about how one of the autism hate groups might use the film, I become extremely anxious and so I am trying to not think about that possibility but to make plans to methodically do searches for instances of this, if they ever exist, and to quit blaming myself, which I can’t seem to do yet.
If this sounds like I am being “ungrateful,” do remember that I do consider most of the footage of me to not be doing me any favors, but to be causing me problems, some perhaps unforeseen, like what will happen now that the film has attracted the attention of people whose “work” against people with disabilities I have countered for years. After the film was aired on PBS, I checked every few days to see what was being said about it (and me, unfortunately). During this time I found things like the “interview” I never did, links to opinions about autism and about me and my family that made me cringe, and this kept me up a lot of nights being very anxious. 
As an aside, the irony of my husband asking where the accountability was … I was being accountable by working overtime to pay bills. That’s why I learned I was Autistic. I was taking on so much extra work after the refinance that I was working as fast as I could on an extra book about psychology, which is where I saw the term PDD-NOS and almost did not even look it up as it did not need to go in the index, and I was working against the clock to get the “extra” work done so I could pay bills.
How were you expecting to be characterized in the film? What did the film miss about you and your work?
I was expecting more about parenting. I even sent an email to people the day after the filming, saying how excited I was that positive aspects of Autistic parenting would be shown. And I do like the footage of me with my child, but my parenting is not even broached in the film other than seeing me with my son a couple of times. Why wasn’t my being an Autistic used in marketing materials? (Or anything other than that marriage stuff?) I don’t get to say anything about autism or neurodiversity much, except for that bit about Ari telling me, in the first email I ever sent to a group of Autistics, that he did not hide his neurology and he let his actions speak for themselves. That’s a nice bit.
I was also hoping to see some of my autism and disability advocacy work. Jim Sinclair, founder of Autism Network International (ANI) and Autreat viewed the film and told me, in private correspondence, but they interviewed you and had nothing about any of your other advocacy work at all!
Some people have said, in response, “Well, it’s not a film about advocacy.” But since advocacy work is a big part of my life, and this is purportedly “my point of view,” you would think that at least some of that material would be used. And, it is a film about advocacy. Of course it is. It does not go into details about specific advocacy initiatives, but other people in the film comment extensively about the neurodiversity movement, which is about advocacy. 
At the end, the credits do say that I am on the Board of the Autistic Self Advocacy Network and that I advocate tirelessly for disability rights. But nothing of that comes across in the film. Hopefully people are reading the credits and not getting up to get snacks at that point.
Because I smiled, and did not look serious, one reviewer interpreted that as me not being able to deal with reality. That’s the guy who called me a “bubbly daydreamer.” I realize that the film was made for neurotypicals, not Autistics, but really, there’s a lot more that could be said about autism, and I think I must have said something about it in all that filming, something that might be geared toward Autistic people. To code my smiling (which neurotypicals often complain that we don’t do enough of!) as “airheadedness” ensures that I won’t be taken seriously by anyone reading that review. That’s the blurb that was used to make the promotional material, by the way. 
I was also expecting to be in the film more, given that I was told that the film followed three people, one of which was me. In the original 88-minute version, I did not come into the film until over 2/3 of the way through, and then it was to primarily focus on my marriage. Because I am not in much of the film, I don’t know how it can be said to “follow” me. I would think that a person who does not come in until most of the film is over really should not be the focus of marketing, but it’s fairly clear why that happened. The story of a failing marriage where autism is called into question sells films. It sold this one to PBS.
What are your hopes for how the film will be received, given how upset you are about your characterization?
The best thing I can hope for from this film is that it does not have much of an impact and that people forget it. I really hope that at some point I will forget it. I try to already; it makes me feel so anxious that I try to put it out of my mind except when I am checking to see what new things have been written about it (which makes me more anxious, but I do want to see what is being said). I have not been able to promote it at all. Why would I do that to myself?!
I am even hoping that some day the filmmaker and PBS will decide that, since they can’t market it using my marriage any more, there is really not that much of a point of having me in it, and do a version that takes me out completely. Since I did not come in to the original until more than 2/3 of the way through, I imagine they can just remove my section, leaving most of the film intact.
What do you want other Autistic or autism community interviewees to learn from your experience? What do you want interviewers to learn?
Autistics (and parents) are a vulnerable and inexperienced source and need to be safe when being interviewed for movies, magazines, etc. We need to change the paradigm about how people talk about us and use our lives to make their livings. 
Solutions include having the right to view and decide about material used up until final editing of the work. This “takes power away” from journalists and filmmakers, but it is more honest. Sacrifice a bit of your power over your informants/subjects in order to achieve an outcome that will be desirable for all.
I do not think that the Filmmaker Knows Best, just because that is the person who was making the film. I think the filmmaker did not think through all of the implications of me being presented in this way, any more than I was able to. Other people, including other filmmakers, have tried to tell me that this filmmaker is my ally. I don’t think so. Too much has gone wrong. He is a nice person, but he does not know how to represent me or my point of view, and some of what he has said about me in interviews is questionable at the very least.
I am also concerned that people too easily confuse the idea of filmmaker as an artist with that of being an expert on the material being filmed. A horrifying example is notorious autism pseudoscience proponent Andrew Wakefield’s partially completed documentary ”Who Killed Alex Spourdalakis?,” which is titled as though Alex’s murder is some sort of conspiracy, even though his murderers -- his mother and godmother -- are well-known and in jail with no bond.

--> Seeing people take filmmaker’s versions of stories as truth is especially distressing because of the recent spate of murders and attempted murders of Autistics and disabled people. Very shortly after Wakefield’s film’s claims that Alex Spourdalakis died due to lack of Wakefield-approved “supports” was promoted via an “investigative journalist” at CBS News, another parent attempted to kill her child, prompting speculation that the attempted murder was a copycat crime.

I am not the only Autistic person distressed by a filmmaker’s misrepresentation. Sharon daVanport, a fellow Autistic advocate and activist, had this to say about non-autistics interviewing Autistics:

Paula and I have discussed our disappointing film experiences in detail and we've been a source of encouragement to one another – it’s good to know you’re not alone when you’re feeling traumatized. As she already explained, filmmakers have a responsibility to represent their film subjects with accuracy. When filming people with disabilities, that responsibility means extra care and consideration -- especially with respect to communication challenges that might very well be discovered after the filming. Neither Paula nor I were offered such consideration.
"Like Paula, I found that the director of the film my children and I participated in did not take my concerns about accurately representing neurodiversity seriously, and he went so far as to use shaming-language in an email after I shared my concerns, he said, ‘You should listen to yourself. You're pinning yourself into a corner by trying to live up to these standards of what neurodiversity is in your mind.’

"That’s right, he attempted to tell me how I should think about neurodiversity -- even correcting my own thoughts about neurodiversity. I'm still in shock at his audacity about that one.

"So this is what I have learned, this is my takeaway: I will only participate in interviews where questions and an outline are presented to me ahead of time. Though not a guarantee against future edits, this option at least has a better chance of ensuring accuracy. I don’t naturally process spoken language in real-time, so any answers I provide to someone in an interview, will, in all likelihood, require editing in order for the truth of my thoughts to be conveyed in the final product. Working with a director who honors that access need and is willing to put it in a signed agreement is imperative to a project’s integrity.

"I learned this lesson the hard way: our words are immortalized when recorded, and anything less than our true experiences should not be preserved. If directors and filmmakers are not willing to provide individual access needs to people with disabilities, and they don't further ensure it in writing before filming, then I recommend reconsidering participation.”

Yet people say “You should have thought of that” and place all the responsibility on you.

The filmmaker or PBS or the marketing people who were hired by the filmmaker to come up with materials should have considered my precarious financial situation and the fact that I am disabled.
Even if some of my worst fears about the film’s potential for damage to my community never materialize, the negative effects on me personally have been profound. Even without one more disturbing thing happening.

People have told me that I am in this for the long haul -- the film is out there. Negative things will be said or implied about Autistic/non-autistic marriages/relationships. Even PBS and the filmmaker did that before I put a stop to it. 


I can envision having to live with the fallout from this for a long time; and even if I don’t personally, other than how it is affecting me now, it might be used against some other Autistic person and I will never know it. That (and the financial concerns, of course) is what keeps me from sleeping well, or at all. 

I want to apologize to anyone and everyone who might be negatively affected by my participation in the film. I have publicly apologized to Autistic people on my blog, and in person at Autreat (which was both a heartfelt and a symbolic, in-person apology to ALL Autistics), for anything negative about autism and marriage that might come out of this film. This apology is not intended to excuse myself for anything that might make it harder for other people but to acknowledge and take full responsibility for my part in it.