Monthly Archives: February 2009

“I do doodle. You, too. You do doodle, too.”*

a complex doodle in red pen that ends in a lot of plant-like forms and a watering canDoodling Can Help Memory, a study published in Applied Cognitive Psychology found (popular science article on same).

This is kind of funny to me as I was often admonished in school for doodling, teachers insisting that I was not paying attention. I made more than one teacher extra irritated by echoing back enormous portions of the lecture they were giving in what I thought was honest proof of my actually paying attention. This admonishment about “not paying attention” also followed on the heels of me tapping, rocking, moving in any way or pretty much doing anything besides sitting completely still–ironically something that will cause me to become utterly unable to pay attention.

The doodle study reminds me of the eye contact study that included key findings such as:

* It is relatively easy to train five year olds to avert their gaze more when answering questions. This increases their ability to answer both verbal and arithmetical questions.

* Children develop the use of gaze aversion as a concentration tool during their fifth year.

* In the laboratory, children averted their gaze less when interviewed across a live video link than when interviewed face to face. However, question difficulty had an enormous impact on the amount that children averted their gaze from the interviewer in both situations. This suggests that children avert their gaze when answering difficult questions to avoid the extra mental effort of monitoring faces, rather than for social reasons, such as embarrassment.

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Sensory Films Score One for Autistic Kids; Adults and Others Ignored Again

six slightly different industrial ear muffs strung on a clothes line, a number of unidentifiable aerosol bottles in the backgroundIt’s with very mixed feelings that I read articles like Movie magic for autistic children. The Autism Society of America is doing “sensory films” nation wide, where the sound is turned down (yay!) and the lights are (why this item is sensory friendly I’m not sure–seems the opposite to me) turned up. And stimming in the aisles is allowed. Groovy.

Movies have gotten increasingly loud in the U.S. (perhaps elsewhere too?). When I was a kid and even a young adult, the sound-discomfort was there but bearable for a good film. Recently if I get to the theatre and realize I’ve forgotten my Peltor Optime III industrial strength muffs I turn around and go home. No movie is worth sound-induced catatonia. That’s decidedly not entertainment.

So, truly, I would adore sensory friendly films with the volume somewhere nearer the tolerable range (though I could well do without the “it’s OK to shout and talk” bit yikes!). And so would a bunch of people I know who aren’t on the spectrum but still find today’s theaters unbearably loud. I have checked my observation on the increased loudness of films with others and it’s not just me getting cranky with age. Like most accommodations, quieter films would likely appeal to a larger population than just those whose disability it targets.

But, of course, these “sensory films” are all for children. Because adults may not have sensory issues? Because adults don’t capture the public’s heart-strings? Because no one is representing the interests of adults in the development of these programs? Because–why? Who knows, but it’s there again.

I might appear childlike at times, but I am definitely no longer enthralled by Disney kids’ flicks. Maybe one or two when I’m sick with the flu, but how about a nice sensory friendly Watchmen, eh?

(And while we’re on the topic of accessible movies for all ages, what about better options for captioned films?)

photo credit Scott Beale / Laughing Squid

Autism Awareness By Demonstration

an abstract dot pattern is blurry in the back ground, a pair of eyeglasses is in the foreground, the abstract dot pattern is clear behind the lensesThe term “autism awareness” at this point makes me cringe like an abused dog expecting to be slapped. Too often “autism awareness” translates directly to, “a bunch of harsh, dehumanizing marketing telling the world that you are worthless trash.” So I nearly didn’t click on the link called Northern College Awareness Days puts focus on autism–but I’m glad I did.

It seems, from the story at least, that Northern College in Canada has taken “awareness” to mean “awareness of a perspective besides your own,” and has been doing disability “awareness days” for the past 20 years, including this clever exercise:

Throughout the morning, about 39 teams will gather in the college’s main foyer for the beginning of the wheelchair rally, which takes able-bodied people through a course in the college in attempts to complete challenges and win points for their team.

“It really opens their minds,” Frappier said. “Going up and down a ramp, someone without a disability might take this for granted, but when you’re in a wheelchair it’s a little different.

“A majority of the challenges are related to autism, but there are some related to other disabilities.”

This is no small event either–Northern College is expecting about 200 people.

I wish there were more details about the types of challenges related to autism planned–would the challenges be similar to the simulations of yada4schools? I do hope so. I do hope it’s as perspective-enhancing as the wheelchair piece, and not just a bunch of advertisements about how terrible people like me are.

I wish even more for the term “autism awareness” lose its more current sense of “look at what a nasty horrible problem autistic people are” and start being used more commonly in the sense of “see what it’s like to be be an autistic person.” Only with the latter can mutual understanding and communication be built.

Life Skills Bridges and Gaps: The Other Side of the Story

print of a woman putting dishes in a dishwasher in a 1937 kitchenThis morning I posted about life skills programs in a “this is a good thing” sort of way. And it is a good thing for people who actually want to acquire those life skills, or for whom acquiring those life skills is a good choice. As a reader was quick to comment however, getting someone else to perform or assist with these life tasks may be a better option.

A few years ago I wrote in an exchange with a primary school autism specialist, “The thing that baffles me is that with typical kids people use their talents and strengths while supporting their weaknesses and embracing their individuality, so why do people not do the same with kids who are wired a bit differently? Why does the focus then suddenly go to focusing on the weaknesses and avoiding the strengths and seeing the differences as a pathology instead of as an individual to be embraced?”

Joel Smith wrote What’s An Accommodation? that does a tidy job of pointing out the way that society works to support the weaknesses of the majority–so much so that people fail to recognize that they are in fact having their disabilities supported. Smith’s example is that because most people lack the ability to be auto mechanics, they hire those who do have those skills to fix their cars.

From a recent presentation of mine regarding teaching “life skills” in a public education setting, “Sometimes it may be appropriate to just assist a student or substitute a requirement, especially in the case where the student does not have sufficient executive function or motor skills for the task. Remember, some of us may need help with these sorts of tasks for the rest of our lives. Don’t make us feel bad about that, instead, let us really soar at the things we can do well. After all, if one is making millions as a software tycoon, one can hire someone else to make the bed.” (last sentence intended as a joke)

This is not just a matter of “can’t do task”–sometimes it is a matter of “shouldn’t do task.” When I try to manage daily living skills I end up exhausted and feeling feel terrible about myself. But when I can spend my time engaged in skilled work in science and the arts I end up invigorated and feeling good about myself. Is “independence” in daily living for me worth the price? Is a life spent only on grinding drudgery and relentless pounding on weakness with no hope of reaching one’s true potential even “independence” at all?

Separating out which parts of my life would be improved with skills training versus which parts of my life would be improved by having a support person assist is still a “work in progress” for me. Before assuming that improved life skills are a good thing for a person on the spectrum, it’s important to consider whether there would truly be an increase in quality of life–or if it’s just trying to force someone with no head for motors and engineering and a hatred of grease to work on their own automobile engine.

Options for getting daily living needs met need to be available, accessible, and based on what the individual themself wants. There is no “one size fits all.” And no matter what option is taken, access issues for adults remain.

Life Skills Bridges and Gaps

a long, narrow, wooden, pedestrian suspension bridge across a deep, watery canyonThe Community Adult Autism Partnership Program (CAAPP), in West Chester, Massachusetts teaches life skills like making doctor’s appointments and cooking. The article says, “While there’s services for young kids, adults with autism have few options. But at Devereux, CAAPP picks up where some alternative schools leave off.” (video included with the CAAPP article) A much more mature program, Willobrook in New Haven, Connecticut, teaches vocational, life, social, and self-advocacy skills. Willowbrook’s executive director describes,

When students come here, they had no voice, they had no ability to advocate for themselves, say what they needed, felt they had no right to choose … now that individual is not only living in their own apartment, but they’re choosing their own paint colors for the walls.

I don’t know anything personally about CAAPP or Willowbrook and am not explicitly endorsing them (if anyone here knows anything specific about the programs feel free to comment). But the idea of such programs is highly appealing to me. Perhaps because I’d have less angst in my life right now if somehow I had picked up a few useful life skills in the past thirty-mumble years like, er, how to prepare a meal…

There are things I wonder about when I read about these sorts of programs.

1. Are the programs really as good and useful as they sound?

2. If so, can we have more such programs, please?

3. How many of these programs are accessible and open to older people who are long past “transition age” from high school?

Teaching young adults how to manage life and advocate for their needs with their unique set of abilities and disabilities after public school is a gap in services to be bridged. But that gap may be even wider for older adults who are not being “transitioned” from one special program to another. For those of us who entered the system late, particularly those of us without a parent to lend “credibility” to our legitimate needs, access to services may be currently unbridgeable.

The Languages of the Arts

a 12 year old african american girl in a pink stocking cap holds up a comic book she has drawnIn Autism and the Myth of the Person Alone, Sue Rubin writes, “not all communication is best served through speech. Art and music are great examples of languages that do not have to be spoken to be conveyed.”

Art is firmly on my Interests list; it’s no coincidence I post often about art. I’ve been expressing myself visually since as far back as I can remember. In this word-based medium here it’s hard to tell, but my day-to-day, in-person communication is managed in a large part through diagrams and images; the first question I ask before every meeting is whether a whiteboard is present.

The Maryland Gazette posted a story Autistic student turns to comics to express herself about Alice Umoh, a 12-year-old with an AS diagnosis who is an avid comic book writer. Creating comics, an art that combines visual and literary languages, is currently Alice’s passion, and she is, according to the article, quite effective at it.

Sharing the spotlight from the Loudoun Times-Mirror in Virginia is about a Very Special Arts theatrical troop. (The article includes a a nice bit of social commentary on how disability is treated in society, “ranging from the very cruel and abusive to the very enlightened and nurturing,” with the note the VSA theatre troop takes the more enlightened path.)

The Autism Acceptance Project (TAAP) in Canada, has an online gallary of visual arts, including artists such as Larry Bissonnette who use visual expression as a major component of their communication. Donna Williams has a wide range of artistic expressions, including the visual, the musical, and the cinoematical.

Artistic mediums each have their own language, the language of mark-making, of composition, of movement, of sound and silence. These languages have been a powerful tool for expression and communication since the earliest know points in human history.

photo credit Brenda Ahearn/The Gazette

Self Advocacy, Power, and Fear

a woman on the left edge of the photo has her hand over here face in fear, the rest of the image is empty and blackSelf-advocacy involves 1) knowing your needs, 2) communicating your needs, 3) enforcing your needs. I’m highly skilled at the first item. As long people are accommodating of my communication style, I’m not too shabby at the second item either. The third item however can be a big problem because it involves barriers set by people, agencies, and bureaucracy. These barriers can be especially difficult to surmount when the people or agencies have the power to revoke services necessary for survival or quality of life.

Without going into too much personal detail that will likely get me into even deeper trouble, I’ve been trying to get some needs met with one of my service providers. My requests have generated quite a lot of resistance on the part of the provider, despite being (if one is actually reading what I’m asking for not some imaginary thing I didn’t write) within the range of services available to me. This agency currently provides me with some essential components of my long term survival.

So today as my stress levels are peaking far into the danger zone and I’m on the edge of utter panic about still not getting these needs met, I’m simultaneously thinking, don’t say another word, not another email, shhhhh, the agency is already pissed for hearing this needs request too many times, don’t make anything worse, step back, be cautious, do not “rock the boat.”

Eventually someone following the situation pointed out very plainly what was going on, “Stop being scared of the agency; it works for you not the other way around.”

To which I of course responded with an extra dose of panic, “But if I mess up at all and make them any more angry, if I misstep, they will drop me from the program and then–” Panic, oh yes. Panic for the past 24 hours. Keeping-me-awake-at-night panic.

But here’s the thing. I’m afraid to stand up for my rights and my needs because I’m afraid that the people with the power will deny me access to things I need. This sort of power imbalance is a way that, often unintentionally, social service systems themselves disempower and silence self-advocates.

You all probably know what a brat I am by now and how fierce I am about control over my own life. But even I can be brought to cowering and cow-towing to The Powers That Be when I feel like my quality of life is being threatened.

I’m feeling a little better after much crisis management and some deeper thinking. I’ve come to terms with the reality of the risk and have a “plan B” for what to do in the event that my provider did drop me. In this particular situation, I do have options. I’m a little ashamed that I let the provider have that much power over me.

But truly, me feeling better is not the point. The point is that fear of loss of services is a huge (possibly deadly) barrier to the empowerment of self-advocates. Not convinced on the possibly deadly? Recall the recent situation with Minna Mettinen-Kekalainen. Definitely an civil rights area that needs attention.

Disclosure 2: Who Needs to Know?

closeup of a hand holding a small notepad, on the notepad is written, 'I have autism so I cannot talk to you during the trip. If you need directions please contact your dispatcher.  Thank you!'One of the disclosure issues that appeared in a thread over the weekend was the question of who needs to know about a diagnosis of ASD, and when disclosure will make a situation better or worse. Unlike the role of disclosure in discrimination protection in the U.S., there are no specific rules about who to disclose to that are applicable to all people. I’ll list my rules, but with the disclaimer they may not be good rules for everyone to follow.

I live in a geographical location that is very accepting of the unusual. So disclosure doesn’t result in the kind of stigma that might occur elsewhere. I also don’t “pass for normal”–people pretty much know “something” is not typical about me though they may not be able to name it. So for me disclosure tends to improve my interpersonal interactions enormously because people then aren’t assuming things like that I am dishonest (cue from lack of eye contact) or rude (cue from idiosyncratic communication). I am comfortable with my identity as an autistic person. So communicating “I’m autistic” isn’t any bigger a deal to me than communicating, “I’m Italian-American.” Similar context is not shared by all people on the spectrum.

From within my context, these are my rules:

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TLAs like ASD, ADD, and DSM

a jumble of alphabet magnets in two different sizesOne of the focuses of the DSM-V Neurodevelopmental Disorders Work Group is whether the mutual exclusion of ADD/ADHD and ASD should remain or be lifted. Currently a person can not, according strictly to the letter of the DSM, be diagnosed with both neurodevelopmental disorders at once. The neurodevelopmental group is working on possible re-definitions of autism spectrum disorders for the new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM).

Though the DSM may currently place some restrictions on which letters can go with which other letters, this article from Times Online asks the question, “Does having a clutch of acronyms after their names help or hinder children with multiple behaviour problems?” and then proceeds to discuss kids being diagnosed with multiple neurodevelopmental and/or psychological disorders from the DSM including the ASD/ADD dual diagnosis. The article raised some interesting (to me anyway) different ideas about where the sudden explosion of DSM diagnoses might be coming from, including some non-medical ones such as changing social and cultural norms and misdiagnoses based on not properly looking at lifestyle (e.g. difficulty concentrating because of lack of sufficient sleep).

I’m still pretty interested in the dynamic between culture defining medicine and medicine defining culture, especially when it comes to the DSM. That book has been a tool of both good (in getting people access to services they may need for survival) and great ill (e.g. the horrors done to homosexuals in the name of “treatment”), and the book is definitely not without strong criticism of its development and usefulness, even by the people who use it. The Times Online article talks about the destructive force of misdiagnosis, especially when a person is given medications for something they don’t have.

How much power, unchecked, should the people who define items in the DSM be given? Do we give too much?

Disclosure Part 1: Legal Protection from Discrimination

a wooden gavelSome ideas about disclosure were brought up in various threads here over the weekend. Disclosure, telling someone you’ve been diagnosed with an ASD, can in some situations be a literal life saver–and may in other situations create extra problems. Even taken just from the self-advocacy side of autism issues, disclosure is too big and too important to address suitably in a single post, so I’m going to do a short series on disclosure throughout the week. First, disclosure in relation to discrimination protection in the U.S.

Last week a California appeals court dismissed a disability discrimination case by an employee with an AS diagnosis who had been called “Rain Man” by his employer. The article cites one of the reasons why the case was dismissed,

…the fact that Smyth called Jones the nicknames didn’t prove that the real motive for failing to promote Jones was because he was perceived as disabled. Specifically, at the time Jones was denied the position, neither he nor the company knew he had Asperger’s…

The article comes from a site geared toward employers, but I would add that there is a “what to remember” for self-advocactes as well: If you want ADA protection from workplace discrimination, disclosure, at least to HR, is necessary.

Things didn’t turn out well for Jones in the story referenced above, but some people on the spectrum have been more successful in winning discrimination-related suits, for example here’s a woman who won a firing-related discrimination case. And here’s a man who won a bullying-related discrimination case.

The ADA folks have put out a pretty readable FAQ on ADA Access and Rights that has a whole section on employment and how get protection from employment discrimination–including who you need to disclose to and what needs to be disclosed.

Similar disclosure and protection rules apply in postsecondary education. The Department of Education’s document on postsecondary transitions does a good job of covering disclosure and its relationship to law including Section 504 and Title II of the ADA. The document Auxiliary Aids and Services for Postsecondary Students with Disabilities includes even more detailed information regarding accommodations.

There are probably other good resources out there related to disclosure and legal protections from discrimination–please share resources in the comments if you’ve got ’em!