An Article on Fundraising for Autism Awareness

Here is an opinion piece I am planning on submitting to my campus’s newspaper about an autism fundraiser we had this weekend:

Last week (my school) College’s service fraternity (name) raised over $7,000 for the Autism Outreach Center of (region). This was quite a feat, and I applaud them for it. However, I take issue with the banner displayed at the Dance-a-Thon which could be classified as misleading.

Before I address the poster specifically, here is a bit of background on autism. Autism is a lifelong developmental disability that is typically diagnosed before a child’s third birthday. Autistic individuals have difficulties with communication and socialization and often have sensory processing and attention problems as well. Many use repetitive movements to calm themselves and require a precise routine to complete life tasks like bathing, eating, and going to sleep. Roughly one percent of the population exhibits an autistic spectrum disorder which includes Asperger’s and PDD-NOS.

The largest sign at the fundraiser had the Dance-a-thon’s Slogan which went something like: We have to SHAKE it up because a cure may be just around the corner. This reflects the title of the cause, “Students Helping Autistic Kids Excel.” The issue is not with the clever title, but with the use of the word “cure”. Autism is incurable, not because a cure hasn’t been found, but because there is no possibility of a cure. Autism is not a disease like cancer or pneumonia, but a distinct neural anatomy. The brains of autistic individuals have structural and functional differences from those of non-autistic peers, and no amount of vitams, chelation, or hyper-baric oxygen treatments will change that. Moreover, when surveyed, most parents of older autistic children say that would not want to “cure” their child of autism, and the majority of autistic adults would also declare that they were not interested in a “cure.”

The fact that a “cure” is impossible and unwanted is not a reason to stop fund-raising for SHAKE however. It is merely a reason to shift the focus away from the scientists researching an impossible cure and onto autistic individuals and their families that do need assistance. Instead of donating in the name of autism so that a cure may one day be found, choose one of the following reasons to donate:

-so an autistic child who cannot speak can be supplied and taught a different way to communicate

-so an autistic adult who has difficulties with blocking out loud sounds can be purchased

noise-canceling headphones

-so that videos designed to teach autistic adolescents social skills can be offered as a resource

-so that workplaces can be developed that can minimize the challenges to tap an autistic employee’s full potential

-or any other methods which will improve the lives of autistic individuals.

The Autism Outreach Center of (region) fulfills (club)’s mission of helping autistic children excel. But this goal of finding ways to help children with autism to reach their full potential should not be confused with developing a “cure.” Autistic children will become autistic adults, and by donating to SHAKE you helped ensure they have the supports they need to succeed.

What really happens when the blind lead the blind?

Think back for a moment and consider if you’ve heard either of these phrases for a moment:

“When the Blind lead the Blind, both fall into a ditch.”

“In the land of the Blind, the one-eyed man is king”.

Likely that exercise wasn’t too difficult, if you’re anything like me, you’ve heard these phrases an innumerbale number of times in your life. And because you’ve heard them so many times, you’ve come to accept them as fact, likely without ever really considering the situations they describe.

Think for a moment about “the blind leading the blind.” The chance of two blind people actually falling into a ditch while walking together is very slim. The sight of the ditch is not the only cue of its location, and if these individuals have grown up blind, they likely have a variety of other compensatory mechanisms which would allow them to locate the ditch and not fall into it.

Now imagine a sighted person leading a blind indivdual around a ditch. Now the chance of the blind person falling in is actually significantly raised. While the two blind individuals were able to offer meaningful cues to each other to avoid the ditch, the sighted person is less aware of the exact needs of the blind individual, and would not be as effectively capable at guiding them away from the ditch.

Think now about “The Land of the Blind”. Would a one-eyed man really be king there? Almost definitely not, and for several reasons. For one, the “Land of the Blind” is likely suited to be used by blind individuals. It is not as if there are signs that only the one-eyed man will be able to read, because if everyone in this land was always blind, no one would have created the sign. Additionally, if this was the first sighted person born in a land of blind people, the sight would likely offer no assistance, because he would not be taught to make use of the skill. If no one else could ever see before, how could he naturally be able to use his sight to his advantage? He’ll also be far easier to distract; while his classmates can focus on their lessons, his eyes will be darting around watching birds fly by the window and the sun play tricks on the ground, all distractions his classmates are not privy to. He’ll likely be an underperformer, rather than a powerful king.

The explanation is that both are metaphors, and can’t be examined literally. But what is the metaphor suggesting? It is putting forth the notion that in all situations, it is better to have someone who is non-disabled or less-disabled in charge, as they will naturally be more capable of handling the situation than those with the disability. It refutes the notion that there are times when a disability could ever be an advantage, and teaches us, from a young age, to reject the disabled and find attempts to make them more like the non-disabled, which will in-turn empower and strengthen them. And that is a dangerous road to travel down, particularly when the evidence points away from it.

Creating Conversations: Using Scripts productively

I mentioned when I started working with ESL students that I thought some of their resources might also be useful for autistic individuals and vice versa. And though I had found a few connections, the first real solid link was founded yesterday.

I do oral practice with students whose native language is Mandarin but who plan to pursue graduate work in either America or the UK. These last two weeks, the students have been bringing in their own materials that they wish to read aloud, in whatever area they think they need the most help.

One of the areas where they really struggle is “social” or “conversational” English. Partially this is because these words are not taught in classrooms, but also because our culture dictates how we respond to certain situations. For example, in the United States, a customary conversation about greiving will go something like:

• Hey! What’s wrong?
• My pet Fido just died.
• Oh I’m so sorry! Is there anything I can do?
• No but thank you. Anyway, have you heard about the Steelers game?

Both an Aspie and someone unfamiliar with American culture might get stuck after line two. How do you respond to news like a Pet’s death. Saying “I’m so sorry” doesn’t come natually because it doesn’t make much sense. You didn’t cause the death, so what have you to apologize for? Then asking “Is there anything I can do?” seems an odd line because what could you really do? Beyond perhaps driving the person to the funeral, what else can really be offered?

But it is social custom to use these lines. When the news of a death is released, and those lines don’t follow it, the conversation stalls as the participants are both left confused and naked in this conversation not based in social formalities. When these lines are presented, the conversation can flow forward onto another topic.

But a foreign exchange student (or an Aspie) might not be aware of these social conventions, leading the conversations to always stall out.  For this reason, conversational phrase books are made. In the particular version my student was using (which I thought was ideal), a topic was given (we worked on sympathy and commiseration), and then 6 example conversations were given, consisting of 5-10 lines a piece, and representing both sides of the conversation. Then, after the example conversations, additional phrases which might occur or be useful were offered (for example, ‘Cheer Up’, ‘Don’t lose hope’, ‘Tomorrow is another day’)

I could see this book as serving two possible uses for autistics.

One, it could be read individually to gain familiarity with the way such conversations are held. Many people acquire these patterns from reading fiction novels, but many (though certainly not all) autistics do not enjoy reading fiction for various reasons. But with these phrase guides, it is possible to read the snippets of conversations that would be useful to incorporate into speech without wasting time on backstory and furthering the plot.

Additionally, these conversations could be used as scripts for role-play, either in a social group or with a parent or sibling. This way the individual is able to practice the conversational techniques as well as switching perspectives, without having to devote energy to develop the phrasing necessary for the conversation. Then in a real environment, hearing one of the phrases from this script could trigger the correct response.

The book my student was using was designed for individuals fluent for Mandarin. I am still looking for an English equivalent and wil update when I find one.

Some Resources for the Elementary level

I’m taking a “Teaching English Language Learners” class this semester, knowing that a great deal of the things learned here will generalize to working with autistic children. So I should have a great deal of resources to present in the coming weeks.

The first I’d like to mention is the “Oxford English Dictionary for Kids“ .  My instructor uses it when working with children first learning ESL, but I was struck by how similar it was in design to some of the tools we were introducing to Josh this summer.

In the classic version, a large picture sits on one side, and on the opposite side, each item in the overall shot is blown up and labelled. This would be more successful with Lawrence who already has the words but hasn’t yet made the connection with the meaning.

The “Word and Pictures Cards” edition has words on one side and the image on the other. They cover topics ranging from emotions to food to toys and games- basically topics kids like to talk about. They can be carried around separately as flashcards or kept in the original binding for organization. For a family pondering trying the PECS program but wanting to try a simpler form first, this item could be an ideal first step. A content version is also available which could be used in a classroom setting for academic topics.

The third item I liked from the same seller was the Picture Dictionary for Content Areas. From dinosaurs to the civil war, this book has pictures and labels for every subject covered in a typical elementary school curriculum. You can easily make a game out of the pages, covering the side with the labels and asking the child to find a particular picture in the larger setting. This would increase both language competency and tracking skills. This would be great for Charger who has a rather complete basic vocabulary and is now ready to move on to science and history.

In all three books, the pictures are clear, the words are relevant, and the book is visually appealing. As it would be less than $100 for the three book set, I am going to suggest to the outreach center that they order the collection for their resource shelves.

Getting it Wrong: Why Bad Press is so important

This post might seem a bit out of character for me, as I usually write about personal topics and tend to avoid the controversial. But I was surfing the web today, and a particular quote made me come to a dead stop. I knew I had to blog about it. The line went thusly, and was printed in the New York Observer in an article about the new movie Adam. You can read the full review here:

It is lethal to get involved romantically with any person with Asperger’s syndrome, since they care nothing about other people’s feelings, needs or priorities. Almost without exception, they leave you perplexed, riddled with doubt and totally depressed.

My first reaction was to be offended. I thought, “who in the world would write this about people with Asperger’s. It’s so off-base. I can’t believe he said that.” Then I went for anger, “Someone should tell this guy off.” Then understanding, “well I suppose if he had poor experience with more then one Aspie, he might over-generalize. But still.” But then I reverted back to anger. My issue is not so much what was said (I’ll let Sandy on AspieTeacher fill you in on why that was wrong), but that it was said. (Before you go all “censorship is bad” in the comments, hear me out).

I have Tourette’s Syndrome, and if you want to name the number one disorder the mass media has totally missed the boat on, it’s TS. To everyone but individuals with TS and their loved ones, as well as a few specialists, Tourette’s Syndrome is characterized by constant cursing, particularly the “f-word” or “n-word”. This is despite the fact that only 11% of individuals with diagnosed TS have corprolalia. It’s simply that the cursing is the interesting part, the one that sells tickets, and magazines, and newspapers, so who would ever include or write about a person with TS who doesn’t have that characteristic. As a result, anyone who I discolse my diagnosis to responds with either laughing or asking how often I curse.

We can’t let the mass media mischaracterize Asperger’s the same way. At this moment, the majority of the American public does not know the term Asperger’s, and of those that do, most aren’t familiar enough with it to learn how to spell it. Sure there was the movie Mozart and the Whale, but who really went to go see that? And there’s the Big Bang Theory and Bones and Law and Order:CI, but if no one ever mentions the word Asperger’s, very few people outside the autism community will make the connection. As a result, the public does not have a way to gauge the accuracy of information about Asperger’s, because they have no resource to compare new knowledge to. Thus, the account given by Rex Reed will be viewed as truth, and people will behave towards people with AS with that information in mind.

Now, I’ve heard from others on Twitter that no one really reads these articles, and Rex Reed is just a sensationalist looking for attention, etc. And that may be true. However, I didn’t first come across the quote in the full review. I first saw it in a list of critical reviews on a disability news site. The Reed Article is also directly linked to by Fox Searchlight* and Rotten Tomatoes. So the quote doesn’t come from a no-name blogger with a readership of less then ten. This is a famous man with big connections who will likely be believed by only mildly-curious Americans who do not make the effort to more thoroughly research Reed’s assertions.

We’ve already let mass media ruin the public perceptions of Tourette’s Syndrome, let’s not let them do the same to Asperger’s.

 *I’ve been notified that thanks to the effort of ASAN and the autism self-advocacy community, Fox Searchlight has removed it’s link to the Rex Reed article. If you have a spare moment, hop over to their website and thank them for respecting the autistic population and pulling the review.

An Autistic’s Review of “Rainman”

You mention the word “autistic” to any American (and probably any English-speaker), you’ll immediately get the reply, “Oh, like Rainman?” And if you search the word “autistic” on facebook flair (yes, I am a flair addict), you’ll find a multitude of buttons with slogans like, “Yes, my kid is autistic, and no he’s not like rainman!”

It’s a classic film, and the public’s go-to source for information. And from what I had heard people say about it, I expected it to be terrible. I was expecting so little from the movie that I put off watching it for three weeks so that I could prepare myself for some long explanations of why X or Y was inaccurate. Finally my mom was able to use a bag of frozen grapes to bribe me into watching it (and yes, I will do just about anything in exchange for a bag of frozen grapes. If I was on the client side of ABA, grapes would definitely be my reinforcer ).

So we turned on the film, and of course for the first fifteen minutes I was entirely preoccupied with Tom Cruise’s hair (because, really, the eighties unisex feathered look is the sexiest haircut available to mankind). And then Dustin Hoffman (Rainman) entered the scene and began to talk. My jaw dropped. “Oh my God, someone stole Charger’s brain and put it into Dustin Hoffman’s body.” I put down the grapes and began to actually focus on the film, rather than the haircuts.

I have to say, I loved this movie (which is saying something considering it didn’t have John Cusack, Dermot Mulroney, or any scenes containing men of a particular persuasion).I found the presentation nearly flawless.

Listening to Dustin talk, I heard Charger. Watching him walk, I saw Carl. Seeing him hit his head in frustration, I saw Lawrence. Listening to my favorite scene in the movie:

• Charlie: You ever take a shower, Raymond?
• Ray: Yes.
• Charlie: Going out in the rain is just like taking a shower.
• Ray: Of course, a shower is done in a bathroom.
• Charlie: That’s the end of that conversation.

I heard me. You can’t argue with that excellent Aspie logic.This was high-functioning autism handled with delicacy, accuracy, and tact. It was breathtakingly-fantastic.

But, note I said, “high-functioning autism”. I recognize that the depiction does not do justice to the difficulties faced with individuals who are more severely effected, and that the Rainman cannot represent all autistics. But no depiction really could. And for a film which directly billed itself as a depiction of high-functionism autism (mentioned several times throughout the movie), it performed at a level that I’m relatively sure cannot be topped.

Rainman is hereby declared Aspie-approved.

Autistic Art

 

So, I mentioned last week that our school was having an autism art show to raise awareness. I photographed some of my favorite works of the kids from the Monday night social group I assist at which will be displayed at this art show:

This won’t be in the art show, but is the banner the kids made for the group. They each chose a possible name for the group and a vote was taken. Originally the kids chose “macaroni-hot-dog-chicken-pizza”, but once the aides threw in their vote, “Star friends” was the winner. Each kid got to put their handprint on the banner, and we added their names and ages.

Boy, age 6. PDD-NOS. Never met a kid who loved Winnie the Pooh more.

Boy, age 10. Asperger’s. This is the boat you must take to get to DinoLand, his imaginary country and special interest. Each week, his family members must vote on a new stuffed animal to run Dinoland. This week a platypus is running the country.

Boy, age 5, Nonvernal Kanner’s. He (in white) and his brother (in red) outside playing.

I hope we do more art in group. Some of the kids have real talent and some use it as a great way to express themselves.

The Truth about Teaching

 

This week I actually read a book that wasn’t about autism (I hereby give both you and Dr. Wop-Wop permission to faint). But it was such a fascinating read, I felt I had to share it with you. The title was “Dumbing Us Down“, and the author John Gatto, one of America’s teachers of the year several times over. The book is a collection of different speeches he’s given when accepting awards and the like. I found it when I got lost in the 370s one night (which, for those as you not as nerdy as me (this means you, Emily, is the Dewey decimal system number for education books). It was one of the few works written in the past two decades in that department (we have no education dept. at the school so…), and I felt compelled to pick it up.

I read it over the space of two afternoons and it was wonderful. At less than 100 pages, with each section broken down into digestible five to ten page speeches, there is little excuse not to make the time to read it. Consider it a series of very well polished blog posts.

I really enjoyed reading this book. It was a bit repetitive, because each speech was given to a different audience so he needed to reiterate his thesis several times, but well worth the read anyway. The premise was that the American public education system is not built with the goal of educating students, but rather of “schooling” students, of teaching them to be obedient loyal consumerists who will uphold the status quo. While some of his language may have been a bit extreme, the overall message was sound and the use of examples from his actual teaching career was a boon.

There is also a longer edition of the work available called “Weapons of Mass Instruction” published in December. But I would check out Dumbing Us Down first to ensure you like his style of writing.

A Great Tourette’s Self-advocate

I know, the topic of this blog is Asperger’s, not Tourette’s (though you wouldn’t know it from my recent posts). Sorry guys! But here’s just one more Tourette’s resource I have to share with you. This young man, Marc Elliot, has TS/OCD including corprolalia (the stereotypical says inappropriate words). And he travels around the country talking to groups of students about his TS and encouraging them to be tolerant of others. He really inspires me, and hopefully he’ll inspire you too.

Note: Wrong video was posted at 8AM this morning.Although Tictionary makes some great videos about Tourette’s, I was not attempting to highlight hers. Marc Elliot’s video (the proper one I was talking about) has now been placed in the post.

Bullying Video Bombs

Last night I watched “Bullies are a Pain in the Brain” a 30-minute animated film about bullying. It was available at the library, and looked like it might be promising.

It wasn’t.

The film depicts the adventures of a boy who is running for class President and being bullied by a shrimpy kid in the class.

The positives:

• It debunked conventional myths like “all Bullies are boys” or “All bullies have low self-esteem.”
• It depicted a relatively popular, athletic teen being bullied
• It didn’t endorse the, “The victim is opening himself up to bullying”  concept that is so common.

The negatives:

• It was said to occur in a junior high, but all of the kids acted no older than 8.
• The author of the story was also a character in it, which created a strange real-world/fantasy-world interaction most ASD kids would find off-putting at best and totally disturbing at worst.
• The main character’s best friend is terribly annoying.
• The actual advice for standing up to bullying is cliche and useless, things like: “Hold your head high”, “Use humor,” and “Tell the bully he is upsetting you.”
• No mention is made of what to do if the bullying gets truly phyiscal (beyond a mere tap or light punch), and there is no endorsement of letting a trusted adult know. In fact, there isn’t a single adult in the entire film except for the author.
• The film is long. 30 minutes is far too extended for one clip on bullying, especially one directed towards a young audience.

Overall rating: One in five stars. This is a movie to skip.