Sunday, January 30, 2011

But You Are a Geek, Right?

It seems anytime I try to point out that not every person diagnosed as autistic is a savant or a socially awkward geek, someone write to ask, "But you are a geek, right?"

There's not really a good answer to that. While I'm busy trying to dispel what I consider an unfair stereotype of people with autism spectrum disorders, someone else is busy taking notes of the various ways in which I match the stereotypes. I'm not sure if that's sardonic or ironic revelry at my expense.

The little bits of my personality that people notice are the bits they see in themselves or their children.
The reality is, beyond the computer skills I'm not much of an archetype, though I am old enough to predate the young people diagnosed with Asperger's Syndrome. Maybe if I had been born 20 years later, I'd be more "typical" or something.

And now I present, yet more questions from the virtual mailbag on the issue of technology stereotypes. Questions have been edited for pithiness.

Q: You are a computer geek, right?

Yes. I started programming in the late 1970s and by college was coding on the university mainframe. I still prefer procedural programming, too, which I find elegant and predictable. I love playing with new languages, operating systems, and software in general. And yes, I built my own computers until switching back to Macs in 2001. Since then, I've still torn apart the PowerBook and the MacBook Pro to upgrade memory and hard drives.

Q: You ever play Dungeons and Dragons? Or anything like that?

No. Not the least bit interested in gaming, which involves other people. I don't play online games, either. Can't stand them. The games I play require one person: me.

Q: You do play video games, don't you?

Pinball is my favorite "arcade" entertainment, followed by Skeeball. I love the real things more than a simulation. I'd have a good pinball machine in the house if I could. It's far more interesting to me than any video game. Who doesn't love Skeeball?

At night, I often play Wordjong DS, a word puzzle on the Nintendo DS. It's probably the only video game I play at least monthly. We own a PS2 that is currently covered in dust. When I do turn on the PS2, it is to play arcade classics, like Pac-Man, Space Invaders, and Centipede.

Q: You say you don't read science fiction. Never?

I've read science fiction, but I don't actively seek it out, no. I have read two Star Trek books and one Star Wars novel in my lifetime. I read two or three William Gibson novels, as well, but wasn't captivated by them.

Q: What about sci-fi films or television?

I thought Deep Space Nine was good until the last few seasons. I don't have any "appointment" television shows that I can't miss. Science fiction movies are okay. I love "Galaxy Quest" and "Evolution" -- neither of which was a huge hit.

My wife likes science fiction more than I do. She's an engineer, so maybe it is a requirement.

Q: So you're a computer geek who doesn't read sci-fi, watch the SyFy Channel, or play World of Warcraft?

I'm not a "normal" computer geek, I guess. My interest isn't video games or animation. My fascination is with words and computing. I'm more fascinated by fonts than avatars. Words were why I cared about computers in the first place. I spent hours trying to customize bitmapped fonts and tweaking the dot-matrix printer output. I still find raw PostScript more interesting than most server-side scripting languages.

Q: What about sports? You hate them, right?

No. I don't hate sports. I enjoy cycling, tennis, racquetball, and skating. I'm not good at sports, admittedly. I like to watch sometimes, but I'm not a huge fan of most team sports. Baseball is all about statistics and odds, so it is interesting to guess what a manager is going to do. I probably couldn't name more than a dozen current players.

As always, feel free to send me more questions and I'll consider answering them.

eBook on Autism and Relationships

I should have a draft of A Spectrum of Relationships (working title) available to readers of this blog within three weeks. I've set a deadline for myself of February 21 for the draft so it can be edited and revised before I present on the topic at a conference.

When I consider it, I'm probably the least likely person to write about relationships for any audience. I was not and am not a social person. But, I understand my strengths and weaknesses from the perspective of "autistic" traits. Hopefully, my words will help parents and other mentors help teens and young adults with autism spectrum disorders navigate the complexities of relationships.

Relationships are difficult for most people. They can be incredibly difficult for people with ASDs.

Spread the word. When the eBook is posted, it will be freely available in both ePub and Kindle/Mobi formats. It won't be a perfect draft; I will update the text as often as necessary to refine it.

If I can get a version posted sooner than February 21, I will do so.

The blog is likely to have fewer updates this month because of the writing project. Meanwhile, if you have questions I should address in the eBook, ask them here and I'll do my best to incorporate the answers into A Spectrum of Relationships.

If the eBook proves popular, I'll try to craft several more on subjects related to life with autism.

Friday, January 28, 2011

Autism, Inclusion, and Tiger Mothers

There is a difference between offering opportunities for “social inclusion” for individuals with special needs and those parents demanding a child participate in “normal” activities. Inclusion is a divisive and complex topic for reasons that are social, political, philosophical, and personal.

I believe, passionately, that individuals with disabilities should have access to any publicly funded services, from education to community-based youth sports. I am not insisting, absurdly, that every activity can be inclusive because some activities exclude all but the most talented. What I do insist on is that opportunities to participate be equal, include the opportunity to fail.

But lately, I have started to encounter parents insisting that children and teens with disabilities participate in activities regardless of individual desire to participate. These parents claim that participation is essential to the development of social skills.

“My daughter would just sit in her room reading about horses if I allowed it,” one parent told me. This parent had enrolled her daughter in youth soccer, dance classes, and other activities. “She needs to learn to deal with people.”

Pushy Parent Syndrome is nothing new. It’s a common problem in upper-middle class neighborhoods. The children are scheduled like little executives. But for children with autism spectrum disorders or other special needs, this isn't merely a problem, it's a potential disaster.

I have half-seriously called my parents “Tiger Mother-lite,” a reference to Battle Hymn of the Tiger Mother by Amy Chua. My parents pushed, and had a “no excuses” approach to trying things, especially those I wanted to try but teachers or doctors said I couldn't possibly do. But, if I found the activity too much, too overwhelming, that wasn't considered the same as quitting. It was a recognition that I tried. Trying was the emphasis — and that meant having the access to try.

My parents were proud when I made honor band in junior high. That was nice. I played in the concert and then never played in public again. Not one more time. I didn't like the other students, any more than I had previously wanted to be Cub Scout or on a baseball team. But, I learned important social lessons. I also learned that I have little tolerance for large groups of children.

Speaking to family autism support groups, I have met teens with ASDs who were nearly suicidal because mom and dad thought their talents should be “shared” with audiences. Can you imagine, even for a moment, how horrible it was for me as a Cub Scout to be around disorganized, loud, stinking (literally), dirty, boys? It was painful. Physically excruciating. Migraines. Palsy attacks. All because I was supposed to be learning to adapt to sensory experiences to “fit in” with others.

When a young girl about 12 told me she would rather die than go to ballet practice, I understood. All too well. I have tried to tell the parents, or more accurately I have tried to ask them, to seek out a family counselor with ASD expertise so they will hear their child’s voice. You don’t know how upset I’ve been by the things preteens and teens on the spectrum tell me. And my duty, my calling or whatever you want to call it as an adult and educator, is to help them talk to their parents, teachers, and counselors so we can prevent real disasters.

Though I did quit band before high school, I still love music. No desire to perform, but I still practice in private. I am glad I learned to read music and play instruments. But, the “social inclusion” was not a positive experience. Private lessons, however, were out of the question for financial reasons. Public school music programs were (at least in my youth) free.

My father never understood my desire to sit alone with books. He probably still doesn’t get it. He’s a social person, and assumes that's normal. He was a good nurse because of this. But, I’m not him. I’m not social.

I’ve been to parent-student groups where the parents just couldn't believe their young teens didn’t want to be little athletes, dancers, musicians, etc. At least, not publicly. The public aspect of a skill or activity often is desired by and for the parent, so the child goes along with it. Path of least resistance.

Ask the child, teen, or adult with special needs how he or she feels about activities. Ask! Don’t assume to know what is either best or most productive. I ended up resenting a lot of things I was forced to do by teachers and support experts. My parents were actually less pushy than the “experts.”

Asking your child about social experiences is not the same as asking and permitting whatever the child desires. It is about not forcing something that can and does make many people feel horrible in ways that apparently cannot be imagined.

I’m not “included” in activities as an adult, though I was in some as a child. Honestly, don’t want to be included in most things — and too many people assume I’m not happy because I like being alone. I felt like childhood was years of torture. Cruel, horrible torture. It took until the end of junior high for me to tell my parents how much I dislike being around my "peers" just to make my family feel good.

Definitely, I was “capable” of some public participation — but hated those moments of life more than words can express. Now, I do what I want, when I want, including very few social situations, usually out of necessity. Much happier not trying to be normal while silently screaming inside (and literally melting down later).

The spectrum of functionality does mean many socially able teens and adults (Asperger’s, PDD-NOS) want social interactions and benefit from them in their view. That’s why asking the child with autism is essential.

It took me a long time to speak up and say what I was thinking and feeling.

I know my parents thought something good was happening. Instead, I was cataloging all the reasons people are to be avoided: they lie, omit, feign emotions, manipulate, etc. I have journals from fourth and fifth grade on human ticks I noticed and set to memory.

Were these valuable lessons? I suppose they were. I studied neurolinguistics and psychology to better comprehend human patterns. I ended up with a doctorate in communication and pedagogy, analyzing the lies people say in public and teaching special needs students the history and “art” of rhetoric for survival. I have zero tolerance for lies — social white lies or serious self-promotional deceptions.

I memorize mico expressions, body language, and linguistic cues. Sure, it is valuable. It’s all about processing interactions as if I am analyzing computer code, spotting the patterns of each persona and situation.

Talking and listening are the best things a parent can do. I cannot stress the value of dialogue enough. It might be exactly what you want to hear, or it might not be. Your child might want inclusion. Or, he or she might not know until it is tried. I found out pretty quickly how I felt. The social world isn’t for me.

Just one person’s view — mine.

Thursday, January 27, 2011

The Big Bang Theory: TV and Autism Advocates

It seems every time I address a group, someone asks about "The Big Bang Theory." Even after I explain that I have never watched a complete episode — and until recently not even most of an episode — I am asked about the characters. The common questions include:

Q: Don't you just love Sheldon Cooper?
A: I didn't know who he was until recently. I Googled the name, honestly.

Q: Couldn't you tell how much like those characters you are?
A: No. I found them annoying. I don't like most science fiction or comic books, either. Though I do appreciate references to obscure scientists.

Q: Didn't you go to CalTech?
A: No, I went to USC. I'm a fiercely loyal Trojan. A friend from USC married a Ph.D from CalTech, but that's as close as I get.

Q: Don't you have several degrees? Wouldn't you like another degree?
A: Possible evidence that I make dumb choices.

Q: Aren't you a genius?
A: It doesn't make me funny, either. I guess I do share some traits with TBBT characters.

I am often asked if I watch any of the popular shows with characters celebrated within the autism advocacy communities. I don't believe so. I find "Bones" annoying, have never seen "Parenthood" or any other shows people mention to me, and I am losing interest in "Modern Family" after seeing six or seven episodes with my wife. I can relate to Manny on "Modern Family," mainly because I wanted to be an adult, not a child.

Tonight I watched "Life After People" and "Mythbusters." Television is okay, but I prefer the educational and non-fiction cable networks. I love things like "Mutant Planet" and "America: The Story of Us." My weaknesses are TLC, Discovery, History International, and the Science Channel.

I do enjoy some USA and TNT shows: "White Collar" and "Leverage" are interesting. The notion of being able to adapt, like a chameleon, to social situations fascinates me. I would love to have the skills of a Neal Caffrey or Nate Ford.

What I really miss is the old A&E lineup of classic BBC mysteries. A&E is reality garbage, now.

There you have it. More blunt answers to common questions.

Wednesday, January 26, 2011

Sexuality and Autism Spectrum Disorders

Yes, sex and ASDs. Part of my February 26 presentation at Arc Midstate's annual conference will deal with sexuality and autism. A short eBook is also being created, which will be free.

Let's get the obvious out of the way: students with ASDs grow up to be adults with ASDs. Many, if not most, will have the same urges, impulses, and desires as the rest of the adult population. And, though their parents and caregivers might not want to ponder this, the student with an ASD will experiment and eventually engage in romantic physical contact with another person. Some will get married as adults and have children of their own.

Teens are teens, regardless of any unique traits or challenges, and this topic can't be ignored, even if parents have wanted to avoid this topic for centuries. The best thing we can do is offer some advice to prepare young people to help them deal with emerging sexuality.

I'm only going to post a few thoughts for now, until the presentation is finished. I'll post the outline of the talk within a week for any comments and suggestions before the event. The comments are admittedly generalized, but might not apply to every circumstance. I do appreciate all children and teens are unique, so adapt this advice to your situation.

There will be significantly more detail in the eBook, where such content is more appropriate.

Q: When do we start talking about sex?

A: Elementary school, if not sooner. Children notice mom and dad are different, from mothers nursing to people wearing different types of bathing suits. Because children with ASDs tend to be literal, don't try to use cute metaphors or unusual words for real biological information.

In the early grades, explain that some parts are private. Don't merely give the explanation, "It's wrong for someone to touch you there." Explain that reproductive organs are special and should be protected. Yes, protected. I've found that language works well for many parents.

I've been asked why this is important. Now for a sad truth: students with disabilities, including cognitive and learning challenges, are more likely to be manipulated by predators of any age. I have visited schools where young boys in fifth and sixth grade were sexualizing and trying to "play" with the girls. You have to explain what is and isn't appropriate before there's a problem.

By late elementary, you should be explaining "where babies come from" in some detail.

Q: How blunt should I be with a preteen or teen?


A: Extremely blunt. Set real boundaries, with good explanations. Explain, bluntly, that only adults are ready to be parents. Stress this from adolescence through the teen years. Sadly, one of the most common lines used by same-aged teen predators is, "Don't you want to be a grown up?" That's followed by the, "You want to be my boyfriend, don't you?" Talk about such lines and why they are lies. Call them lies, too, because that's what they are.

Q: But I want to avoid scaring my teen about sex. Isn't that important?

A: I understand many parents want to talk about the importance and "naturalness" of sexuality. You do need to remember that your child might be socially vulnerable. It is essential to balance that vulnerability with your desire to be a "cool" or "open-minded" parent.
Get through friendship, crushes, and simple "dating" (like middle school movie dates) first. Your child first has to develop the social skills for building deep emotional relationships (ideally) before you deal with him or her having sex! Let's deal with the first kiss before condom questions.

Q: What about things teens try? You know… those things.

A: Everything from holding hands to kissing to masturbation is something you need to discuss openly with your teen. These talks aren't easy for any parent. You have to decide when they are appropriate discussions based on your child's particular social development. If he or she isn't dating, then long talks about touching aren't valuable. You need to talk about things before they happen, but not before the other "steps along the way" have occurred.

I'd discuss holding hands early, since students do that at school (even when it is banned). Before your preteen or teen as a "movie date" or attends a school dance, I'd explain kissing. Tell your child you only kiss certain people on the lips. Yes, that really is a conversation you might have to have. I've met a parent of a young teen girl who was letting "boy friends" kiss her at lunch. You can already imagine the horror of the parent. Don't overreact in such cases; the young girl didn't understand she was doing something wrong. She thought people liked her more.

Social naivete puts many students with ASDs at risk. Do not forget this! They really do need guidance, often more guidance than other teens. It is a challenge for parents and teachers, who are used to teens making and learning from mistakes.

I'll be going into far more detail in the eBook and at the presentation. Yes, tough topics.

Q: My teen doesn't have basic social skills. Do I really need to worry about sex?

A: Yes. Your teen is still living and participating in a highly-sexualized environment: school. Real friends and "friends" will be on their own sexual journeys towards eventual romance and love. Many, if not most, teens with ASDs want to be like other teens. Mimicry is how many of us survive in social situations, so we mimic the good and the bad behaviors of our peers.

Passing for normal can include engaging in behaviors we might not have an impulse to try, but many of us want to be accepted. I wasn't that interested in some things I did as stupid teen... from trying beer (still hate most alcohol) to cigarettes. Peer pressure is almost universal. As a teacher, I would have to admit things are much more sexualized at an earlier age today than in the 1970s and early 80s!

Q: Aren't some people with ASDs asexual?

A: Are you asking because you hope your teen falls into this category? Yes, some are "asexual" in that they do not have strong physical impulses. However, many "asexual" people with ASDs still seek out emotional connections and relationships. Even a non-sexual relationship has emotional depth and comes with all the standard risks of being hurt if it ends badly. All relationships are important.

These are just some of the questions I'll address.

I am preparing a slideshow and an eBook on this topic. Both the slides and the eBook will be freely available as soon as possible so everyone can comment on them and help improve the "v1.5" versions. I never consider any presentation done, since audiences tend to ask great questions I hadn't considered. The eBook will be in ePub format.

Arc Midstate Minnesota
Regional Annual Conference
Saturday, February 26, 2011
Sauk Rapids-Rice High School

You can contact Arc Midstate at:

Registration Fee $49 Register Early! Conference enrollment is limited

Monday, January 24, 2011

Visitor Q&A: Diet, Clothes, School, Books

I have received a few questions via e-mail and Twitter. As promised I will answer questions as best I can. You can contact me on this blog's "Ask the Author" page or via Twitter (@autisticme).

Q: Have you tried different diets? If so, do they have any effect?

A: I have a chlorophyl allergy (seriously), so I cannot eat a lot of green vegetables without incurring a lot of pain and misery. Unfortunately, I also love salads, so I must limit the amount to a small, small serving. We tend to eat fish and chicken. I react to grease and oil, so we bake and grill with fruit juices, coconut milk, and various marinades.

I absolutely adore breads and cookies. Not about to skip those, but we also try to control carbs because I want to lose weight. I've been avoiding pasta and other starchy foods.

Q: Are you sensitive to clothing?

A: Yes. I have always removed tags. I hate "itchy" clothes and really hate itchy bedsheets. I don't like wool, despise "sticky" clothing in summer and don't like seams. The list of what I do like is shorter than what I dislike. I like jeans, loose polo shirts, and lightweight canvas court shoes (Converse, Vans). When I have to dress "nicely" I wear high-end cotton shirts, lined slacks (to reduce itching), and well-padded dress shoes. I will say that Men's Wearhouse has been great at helping me deal with some custom needs. I also received great service at Brooks Brothers. No tags! Custom (loose) fit! Ideal.

Q: Were you bullied in school?

A: Do teachers count?

Q: What types of books do you read? I've heard students with Asperger's like science fiction and history.

A: I don't know if people with AS or any ASDs have particular book preferences. I like classic English literature, children's books, history, language, psychology, and art books. If I had an endless budget and more bookcases, I'd have every art book I could find. The problem with many art books is that they are little more than "coffee table" books. I want the history, some criticism, and insights.

The last two works of fiction I read were mysteries. The books I am reading currently: a history of America (1870-1940), an educational philosophy text from 1966, and one of the Sherlock Holmes collections. I have a long to-read list posted on both Goodreads and Visual Bookshelf ("LivingSocial"). I should check those accounts to see if my lists are updated.

Saturday, January 22, 2011

What is "Autism" Beyond a Word?

"Autism" is a word with clinical, research, and legal meanings. It also has social meanings and personal meanings to the individuals and families touched by autism.

Defining "autism" makes discussions of "white" appear simplistic. I can explain white to students in a single lecture and then we will agree on the term "white" for the remainder of the semester. I cannot define autism to the satisfaction of anyone, not even myself.

In video production, "pure white" has three precise meanings: 5000, 6500, or 9300 degrees Kelvin. The lower value is slightly "yellow" and the higher is slightly bluish, by wavelength produced. When I ask for "white" I have to be precise and give the Kelvin value to any editor for color matching. You would notice if different editors working on a film or television show used various "white" standards. (I could go on for pages on graphic design issues and color matching.)

The history of "autism" has been traced to 1911 or 1912. It was first used by Dr. Eugene Bleuler, a Swiss psychiatrist. He did not mean "aut-ism" as in "self-obsessed" but instead suggested the observed patients were "self-constricted." They were "trapped" in a world of the self, unable to relate to others or external experiences. Leo Kanner also did not intend to imply patients were selfish, though he did describe them as disconnected and self-oriented.

At first, I thought of "autism" as an instrumental term. No, that's not a music thing. It means a term that itself refers back to defined measurement. White might have different meanings, but they are precise and can be measured by an agreed upon scale using scientific instruments. Rhetoricians and grammarians refer to this sort of language in different ways, but hopefully you get the concept.

If autism is instrumental, we can define it by measurements taken via agreed upon instruments. We classify intelligence this way: test with an instrument, measure, apply an agreed upon term to a set range of scores. (Yes, it is more complex than that, with many debates about I.Q., but play along for now.)
The problem with autism? There's no precision at all. None.

The current "official" criteria for "autism" in the United States is the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition with Text Revisions. Thankfully, we call it the DSM-IV-TR, or simply the DSM-IV. The "text revisions" were important, correcting several errors -- including an error in the criteria for autism. I have posted a discussion of the DSM and criteria for autism diagnoses as a set of permanent pages for this blog.

Here are some of the challenges with autism:
  • Autism describes characteristics of an individual, not a specific underlying medical condition. The reasons for "autistic" traits might be numerous, with dozens of sources. Autism is likely not one medical condition, and those conditions might not be related in any way beyond their expression as "autism."
  • The DSM-IV criteria are themselves subjective. What constitutes a "marked impairment" versus a mild impairment? No instrument or measurement is specified within the DSM, so it is up to the clinician making a diagnosis.
  • Not every clinician adheres to the DSM-IV-TR standard. Some use the DSM code for insurance purposes, but they diagnose autism using a variety of standards. Asperger's syndrome is often diagnosed using such extra-conventional standards.
  • Clinicians and researchers are influenced by the traditions of mental health care, which go beyond any one text. Many of the diagnostic labels associated with autism are traditional, not codified standards.
Diagnosing someone with autism is really an act of labeling him or her based on observable characteristics. What causes a person to be "autistic" doesn't affect the diagnosis, generally. In fact, if a medical cause for the "autism" is identified, the individual's diagnosis might be changed. I've met people with brain traumas who were refused an "autism" diagnosis because the cause of their observable behaviors was known. By this logic, you are "autistic" only if we do not know why you have autistic traits.

I am officially "autistic" with a subcategory of "high-functioning" — but that diagnosis was one of several throughout my lifetime. They are all simply labels, which changed based on how organizations (and various clinicians) defined terms. If brain trauma is exclusive, I don't have "autism," and if you cannot have certain I.Q. scores, I also am disqualified. From experience, I know any label we are assigned might be temporary.

What about those parents, individuals, and professionals with an attachment to the traditional subcategories of autism? As part of the proposed revisions to the DSM for 2013, the various subcategories are discouraged. What happens when Asperger's and PDD-NOS are grouped with all variations of autism?

The official diagnosis of autism makes a child or adult eligible for some supports in our society. In this respect, the diagnosis is not only helpful but often essential to the well-being of an individual. Autism becomes not only a medical term, but a legal term. Simplification for the purposes of everything from insurance billing to special education tracking might help individuals receive extra supports. But, it also removes something.

I'm not sure how I feel about the removal of subcategories. The DSM-V calls on clinicians and researchers to describe autism individually, which is good. However, I suspect practicing mental health professionals will revert to the familiar subcategories.

There are people who have defined themselves as "Aspies" or "Auties" and view their subcategories as communities. I don't consider myself an "Aspie" and don't embrace the label "Autie" or anything similar. But, for many people these communities are important contributors to pride, self-identity, and a sense of understanding. Having only one category for "autism" has been seen as an effort to delegitimize Aspies and their self-advocacy movements.

Again, I'm ambivalent. As a researcher, I like precision. As an educator, I've seen how students rely on differently communities to develop a sense of self. Aspie or not, I respect how the self-advocacy movement has helped a lot of people in the last few years.

This is the latest proposed revision to the DSM-V criteria for autism:

Autism Spectrum Disorder
Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:
  1. Marked deficits in nonverbal and verbal communication used for social interaction:
  2. Lack of social reciprocity;
  3. Failure to develop and maintain peer relationships appropriate to developmental level
2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:
  1. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
  2. Excessive adherence to routines and ritualized patterns of behavior
  3. Restricted, fixated interests
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Retrieved from:
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#
The APA explains their rationale as follows:
New name for category, autism spectrum disorder, which includes autistic disorder (autism), Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified.
  • Differentiation of autism spectrum disorder from typical development and other "nonspectrum" disorders is done reliably and with validity; while distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.
  • Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual's clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to "cleave meatloaf at the joints".

Thursday, January 20, 2011

More on Autism Puzzle Piece Logos, Symbols, Ribbons

I joined Twitter on the first day of 2011 (@autisticme). I also joined a Twibe (seriously?) and registered with WeFollow.com to learn more about what autism-related Twitter feeds might exist.

Within a few days, I was already observing a familiar debate. In fact, it the debate I described in the single most-viewed blog entry of The Autistic Me, which dates back to 2008 (see "Logos, Symbols, and Ribbons").

Various "Aspie Advocates" are still protesting the puzzle piece. I'm sure they will be protesting the puzzle piece next year, in five years, and a decade from now. The "neurodiverstiy" (ND) movement doesn't like the puzzle piece. (Everyone's brain is different: neurological diversity is a fact of life.)

Honestly, I don't care for the puzzle piece either. I've written and said that I find it personally off-putting. If I am a puzzle, I'm not more or less of a puzzle than most human beings. I'm told, "Oh, no, it is autism that is the puzzle." Fine, but so are dozens of other human conditions. To me, a puzzle makes it seem like I'm either missing a piece or that I'm that one strange extra piece in some boxes.

Yes, I know people will give me "101 Reasons for the Puzzle Piece" — seriously, I have received at least that many explanations via e-mail. Some are cute, some are only semi-serious, and some are passionate defenses of the logo. Some parents and caregivers identify with the logo more intensely than I identify with my hometown or beloved California.

I might not love the logo, but I'm not repulsed by it. I just think it is strange. I'm not inclined to protest or care as much as the aspie/autie self-advocacy neurodiversity autism rights activists. Instead, I decided to learn about the history of the puzzle piece and other symbols.

It turns out, the puzzle piece was chosen because it was distinct. There was no plan, no long debate about significance. A professional gave a presentation, "Perspectives on a Puzzle," to the National Autism Society, U.K., shortly after the organization was founded in 1962.

Apparently, the puzzle piece logo was adopted in 1963, according to the notes posted by a director of the organization. The original NAS puzzle piece was green. In 2005, Autism Speaks adopted a blue puzzle piece. The Autism Society of America uses a puzzle piece of multi-colored puzzle pieces. You get the idea.
It was designed by a parent member of the Executive Committee, Gerald Gasson, and the minutes of the Executive Meeting of 14 February 1963 read: 'The Committee decided that the symbol of the Society should be the puzzle as this did not look like any other commercial or charitable one as far as they could discover'. It first appeared on our stationary and then on our newsletter in April 1963. Our Society was the first autistic society in the world and our puzzle piece has, as far as I know, been adopted by all the autistic societies which have followed, many of which in their early days turned to us for information and advice.
The current NAS logo is a bit difficult to describe.

One year ago, right before National Autism Awareness Month (April in the U.S.), there was a flurry of outrage on various autism forums protesting the puzzle piece. I understand the response, and I now realize this will be a debate that goes on daily and weekly within autism communities.

http://theautisticme.blogspot.com/2010/03/autism-awareness-month-of-disputes.html
On LiveJournal yesterday there were more than 50 posts within a few hours on the puzzle piece icons / logos used by various autism-related organizations. The vast majority of posts were from people with ASDs who view the puzzle quite negatively. One reason for the depth of distaste is the association of the puzzle with Autism Speaks.
The puzzle piece isn't going away because it is so easily recognized. Parents spot it from hundreds of feet away. It's a way for families to feel like they aren't alone, I suppose. This isn't like a campaign sticker -- autism doesn't go away after six months of annoying television commercials. It's a life-long part of not only my life, but the lives of people around me. Maybe they have something of a need to share that identity with each other.

I realize the self-advocates, and certainly me, forget that our friends and family do want and need connections to share their experiences. They need to feel there's a support network out there.

I might not like the puzzle piece, but maybe it isn't for me. It definitely isn't "for me" in the same way fried Twinkies aren't "for me" -- I don't find it appealing at all. But, the puzzle isn't the biggest issue in my life or in the lives of most autistic students I've met. They care about services and supports, not about bracelets and t-shirts.

Someone from an autism group told me I should be passionate, since I studied "rhetoric" and know the power of words and symbols. Yes, I do know their power. Right now, the power is that it helps organize parents, educators, and other advocates trying to maintain services and supports against a difficult economic backdrop. I might not approve of everything Autism Speaks represents, but I also know I am better off persuading groups to pursue supports for teens and adults than worrying about their symbol choice.

Also, I have been a presenter at Autism Society of America events. I happen to like the ASA, even when I might disagree with some programs locally -- like skillshops presenting "both sides" of diet and vaccination issues. I want ASA to grow and prosper. I'd rather people think of ASA than Autism Speaks, honestly. So, if people want to buy and display the ASA ribbon / puzzle piece, I'm not going to tell them otherwise.

From the Autism Society of America:
Put on the Puzzle! The Autism Awareness Puzzle Ribbon is the most recognized symbol of the autism community in the world. Autism prevalence is now one in every 110 children in America - that's 13 million families and growing who live with autism today. Show your support for people with autism by wearing the Autism Awareness Puzzle Ribbon this month – as a pin on your shirt, a magnet on your car, a badge on your blog, or even your Facebook profile picture - and educate folks on the potential of people with autism! For suggestions and resources, visit www.autism-society.org.
If you want to display, wear, or promote a puzzle piece or some other symbol, that's your choice.

The one logo / symbol I display anywhere is the "bitten Apple" logo. I miss the old rainbow logo Apple used during the 1980s, but we have the white stickers on our cars and even my scooter. The sticker makes it a lot easier to recognize which plain white Jeep Cherokee is ours in a parking lot.

Autism and Relationships from Friends to Lovers

I will be hosting a presentation and discussion on autism and relationships during the Arc Midstate Annual Conference. The description is:
Autism and Developing Interpersonal Relationships - This can be a challenge for students and adults with autism spectrum disorders. This frank discussion explores the positive and negative experiences shared by most people, but with an emphasis on how autism is an additional obstacle to relationships. How can family, friends, caregivers, and educators help nurture the skills necessary for rewarded social connections? What are the challenges faced by individuals with ASDs and how can specific challenges be addressed?
Remember, I am talking to parents and educators with the potential for some teens in the audience. My comments are addressed to the parents, but they are meant for everyone.

Portrayals of people with ASDs range from the anti-social hermit to the oblivious stalker. The reality is more complex. Some people are social, some are not. We cannot assume that someone with autism does or does not want a network of friends. We also cannot assume to know how much someone does or does not desire a "serious" relationship. However, we do need to address some issues individuals and their parents report are common.

The first thing we each need to remind ourselves is that our social skills, tolerances, desires, and needs are not universals. What you want isn't what I want and what I want isn't what everyone else wants. I'll be talking about each of these four things during my presentation.
  • Social skills: do not confuse these for "passing" as normal.
  • Tolerances: both emotional and sensory tolerances affect relationships.
  • Desires: "best case" wishes for relationships, from acquaintances to friendships to lovers. 
  • Needs: what works for us, ideally something close to what we desire.
If you are imagining your son or daughter feels like you do about people and relationships -- you're wrong. It doesn't matter if your teen / adult has autism or not, what he or she feels is unique. You can make some educated guesses, but beyond that you need to ask questions to understand a person.

Here are some questions and answers from past roundtables.

Q: How do I ask my teen / adult what he or she wants?

A: Do what works best when you want to ask anything serious. If you talk over dinner, ask then. If you talk while taking walks, ask then. The big thing is that eventually you should ask if your teen doesn't mention it first. The reality is that you will probably be surprised by the question or situation before you introduce the topic.

As early as elementary school a child might say, "I wish I had more friends." That's a common desire, of course, and you can consider social activities that might help form connections. However, your child might also say, "I don't like kids. They're boring." Yes, that's pretty close to what I said more than once.

If an answer puzzles you, ask for an explanation. When I said I didn't like "kids" I meant they were boring. They weren't interested in my passions and I couldn't understand why not. Doesn't everyone love math? Doesn't every young boy create a card catalog for his library? Isn't tracking the weather daily a normal thing? And who doesn't like to memorize stock and commodity prices by age nine?

Seriously, it wasn't that I didn't like people, but I was easily bored by them and they were really, really bored by me. My parents asked and I told them. My classmates weren't fascinating to me.

When a young classmate liked me, I couldn't always tell. One young lady did all sorts of things for me and I never understood why until I five or six years later. I thought she was being friendly.

I didn't date or go out much in high school. I wasn't that interested in most people. When my parents asked, I told them only a few friends were interesting. It wasn't that I wasn't attracted to one or two girls — it was that I couldn't relate to most of my peers. When I did go out to do something, it was with a small group of friends and even then it was usually a school event. Since I don't care for movie theaters, most restaurants, or other gathering places, there wasn't much to consider.

Ask your teen if he or she likes someone. Look for the "tell-tale" signs most preteens and teens leave: names on notebooks, long phone calls, lots of e-mails / texts, et cetera.

Q: I've heard "alternative" lifestyles are associated with ASDs. Is that true?

A: I have no idea. I've met more people who consider themselves asexual, LGBT, or polyamorous at autism conferences and at groups I've addressed, but I have no idea if there are any studies of this. Maybe there is also more openness within autism groups because they don't care about such things.

Q: I don't want my teen to be lonely. Isn't an asexual person alone?

A: No. Plenty of people with ASDs describe themselves as "gender neutral" or "asexual" and they have friends and coworkers. Just because you might desire a physical relationship doesn't mean relationships without sex are less rewarding.

Q: Should I explain the risks of dating?


A: YES! And make sure your teen knows calling in an emergency is okay. Not only okay, you should tell a teen to definitely call if there's a concern or problem during a date.

Q: How do you develop social skills?

A: Families are small social groups and siblings are often the first to demand some social skills. School, church, Little League, and other activities are all good ways to learn how to deal with (and tolerate) people. I don't believe everyone has to be a charming, witty, social butterfly. However, you do need the basic skills of knowing when and when not to engage other people.

My parents tried Cub Scouts. I did't remain in the troop. It was miserable for me. I did play Little League. I don't believe I ever hit the ball, and I certainly didn't make any big plays. I'm just not a team activity person. I did enjoy a local chess club. I think that says it all.

Q: How do I help my teen deal with rejection?

A: You can only do what you'd do for any teen -- listen and let him or her know life goes on. People don't always click together, and sometimes they do but only for a short time. That's part of life. Really, there's listening and more listening. Maybe you can help by taking his or her mind off rejection, but everyone experiences failed friendships and relationships.

Q: My teen misreads people and thinks they are friends (or more) when they aren't. What can I do to help him or her recognize politeness versus real interest in friendship or more?

I still don't get the signals right. Since I don't reach out to many people, they have to be pretty clear and straightforward and being friends. Most of my friends have been the type of people to invite themselves over to my apartment or house. I've had people take advantage of that, so I've learned to be even more cautious.

If you think your teen might be mistaken for a "stalker" or obsessed fan, then tell him or her that asking how someone else feels is important. Few people will lie when you ask "Do you want to be friends?" or "Do you really like me?" Explain to your teen that "Sure, I like you" is not a ringing endorsement of the friendship. You'll probably have to give your teen some example phrases to distinguish between real friends and minor acquaintances.

Q: You're married. How did that happen?

A: I have an amazing wife, a far better friend and companion than I deserve. Just ask my mother. I liked my wife when I first saw her in junior high. She is really, really smart. She is also very quiet. She loves books, history, math, and science. She doesn't care for stupid movies, drinking, or parties. Her ideal day might be a visit to a museum or an arboretum. We both want a library, while other people might want a game room.

Q: Kids?

A: No. We both just finished graduate degrees and are the sort of people to always worry about security and what could go wrong tomorrow. We'd want to have the complete college fund in the bank before considering children. I love children, for short periods of time, but they can also overwhelm my senses. We have cats. They're a little less expensive.

There's much more, of course, especially the "serious" stuff about love and marriage. If you have questions, ask them here (there's an "ask the author" link on the blog) or consider attending the Arc Midstate Conference.

Arc Midstate Minnesota
Regional Annual Conference 
Saturday, February 26, 2011 
Sauk Rapids-Rice High School

You can contact Arc Midstate at:
Registration Fee $49 Register Early! Conference enrollment is limited

Wednesday, January 19, 2011

University Supports and Budget Cuts

As many of my readers know, I worked with the Center for Teaching and Learning at both the University of Minnesota and our sister system, the Minnesota State Colleges and Universities. Today, I received a shocking letter from the Director of Faculty Development: the CTL is closing, systemwide.

This decision is significant because it was through CTL that I conducted seminars for faculty on how to meet the needs of students with autism spectrum disorders and other cognitive special needs. The closure means less faculty development, less awareness, and an increased likelihood that students with ASDs will struggle in the university settings.

I am already an underemployed Ph.D., with a unique specialization in autism and language instruction. My Ph.D. also includes "Rhetoric" in its title. Well, it is time for some persuasive rhetoric from educators, parents, and advocates. If we do not explain that not-training faculty members will eventually increase the costs to society of supporting individuals with ASDs, we will lose more programs that focus on staff development.

Here is the letter I received. The CTL closes in less than two weeks. I'm stunned.
Dear Colleagues:

In follow-up to my September, 2010 memo about changes at the Center for Teaching and Learning, I forward the attached letter from Interim Vice Chancellor Scott Olson announcing the closure of the Center, the majority of its programs, and its website, http://www.ctl.mnscu.edu, on January 31.

As I imagine so many of you will, I feel a mixture of sadness and pride when thinking about this loss. The pride comes in having worked with dozens of talented faculty and staff here in the Center, and in knowing that each year since 1998 more than 4,000 faculty across the state have both benefited from and contributed to CTL. You’ve presented at and attended CTL conferences, managed CTL grants, engaged as lifelong learners in CTL workshops, webinars, and forums. More than 300 of you have served your campus colleagues as CTL Campus Leaders. I know from our analytics that the CTL website will be greatly missed, but we will let you know where to find links to some of its resources on other Office of the Chancellor websites.

This closure is significant, but at almost all of our campuses, faculty and students are dealing with the painful impact of academic program closures. We must respond with creativity and vision. I look forward to working with all who have an ongoing interest in teaching, learning, and the work of faculty to imagine and create a balanced set of campus-based (and, if needed, system-level) services for faculty professional development.

I send deepest thanks for all you’ve done for and with your colleagues through CTL.

L. M.
System Director for Faculty Development
Minnesota State Colleges & Universities
Center for Teaching & Learning

Tuesday, January 18, 2011

Autism Communities

Lisa Jo Rudy, editor and guide at the About.com autism site (http://autism.about.com/), recently asked readers if they feel part of the "autism community." Unsurprisingly, most answered in the affirmative. Yes, they are part of the community. But, I don't believe I am part of the "autism community" or part of one of the many "autism communities" that self-identify in various ways.

The Autie / Aspie / Aspergian / etc. Communities
I do not consider myself an "aspie" or "aspergian." I don't like the term "autie" and have no desire for any autism-related label. I have tried to read various forums and mailing lists dedicated to autistic members (or members with autism) and end up frustrated with the exchanges after only a few days. I've tried some groups two or three times, but their primary purpose -- discussing autism -- isn't that interesting to me. These are really online support groups. That might be wonderful for some people. It isn't for me.

The idea of a support group, social group, or whatever constituted of people with ASDs has less appeal for me than chocolate covered deep-fried bacon with cheese. I don't like support groups; they depress me. The only groups I have enjoyed were hobby-related. Autism isn't my hobby.

Autism doesn't define me. No one thing does, but autism? Seriously, autism is a really, really minor aspect of my daily life. I don't search out new offenses against me and don't always notice when they are obvious. I don't care to protest against the ignorant organizations and their leaders, and I'm not upset that retailers try to help by donating to Autism Speaks, though I would rather the money went elsewhere.

Part of my reaction to autism-focused groups is because I don't want autism to be the focus of my existence. I don't want employers, readers, friends, or family to think of autism when they think of me. Being active in a group makes that group part of your identity.

Advocacy Communities
I try to answer questions when asked, attend conferences when invited to speak, and stand up for students when they have sought a mentor. Often, the best I can do for a student or adult with autism is guide him or her towards a better advocate than myself. There are some great people out there, and I realize I am not as skilled as the advocacy experts.

I'm not an active member of any advocacy group. I don't protest or write letters to elected officials. I don't sit on any boards, committees, etc. I suppose I might if asked, but I'm not as passionate as the leaders of groups tend to be.

Blogging Community
I am a "blogger" and a magazine columnist, but I do not feel attached to any blogging community. I'm not part of a cliqué, at least not to my knowledge, of technology writers, philosophy historians, or political commentators. I don't correspond with other bloggers, nor do I have thousands of followers. There are blogger conventions. The concept escapes me, but I suppose it's interesting to some people.

There are WordPress, Drupal, and Wikimedia forums, mailing lists, and physical conferences. I'm not interested in those, either. As long as the software works, I'm content. I'm even happier if I can modify the code and templates to my liking. Most of my blogging is for my own use; a blog can store notes and thoughts for access at anytime, from anywhere.

The public blogs were something I had to create for a university course. My wife and I discovered people read them, which was surprising. Do I blog for "my community" of readers? I suppose. I feel some level of obligation to continue writing as long as people seem to want to read what I write. No idea why that is, though.

What Are My Communities?
I know communities, social networks, are important to career development. But, I haven't been active in any professional groups in years, either. I wasn't even part of my academic community, because the attempts to participate in social gatherings or even the rare staff meetings were exhausting.

A community would notice my absence or feel my presence. I'm not sure I belong to any community at the moment, unless you count the readers of my blogs. I suppose I should say hello and thank you, as it were, for being my little community.

Hello, community. Thank you.

Sunday, January 16, 2011

What If 'They' Believe I Am Dangerous?

The following deals with an issue as delicately as possible: Has the recent Tucson shooting increased the likelihood that students with autism spectrum diagnoses might be mistaken for safety risks?

At first, I was taken aback by the issue. Then, I realized it isn't new. Students with ASDs already have to battle misunderstandings and cultural biases.

Several college and university students with ASDs write to me on a regular basis. I do my best to answer their questions, but I don't always have good answers. Sometimes, I can help or at least offer a little guidance towards where the right answer might be. Then there are the answers that leave me depressed.

I'm going to paraphrase a question from a student, as best I can while still conveying his concerns. I have promised to do my best not to reveal much about the student. However, he's actually one of many with these experiences.
I am a master's student. My adviser recently told me that other students are uncomfortable around me. He said another instructor was also bothered by my apparently lack of attention in class. I draw patterns while listening to relax. I really am listening, though. Anyway, my adviser says the department is "concerned" about me. They don't feel safe or something.
You get the idea. The student is struggling to do well academically, but it is the social issues causing problems. He sends the wrong signals to instructors and classmates somehow. The student states his real concern carefully, but I understand it. Again, I'm paraphrasing.
What if the department or some student thinks I'm a threat? What will happen? Everyone is on edge and I'm afraid they'll assume I'm dangerous because I am different.
A simple Google search reveals why a student would be concerned:
Consider the statistics for elementary schools. Quoting from the Associated Press:
More than 20 percent of students expelled from Texas schools have disabilities even though special education accounts for just 10 percent of the state's students, according to a report from Texas Appleseed released Wednesday. And the likelihood of being expelled multiplies two to three times for African American and Hispanic students with disabilities.
How could I respond to this? My personal experiences certainly aren't going to give the student hope. I've been told instructors found me intense, intimidating, strange, and much worse. Though I survived through a doctoral program, it left me with bad memories and even nightmares. All because I was "different" and not socially charming or outgoing.

I am intense and opinionated. I'm also a dedicated instructor and advocate for my students. But, I am not a threat to anyone -- beyond threatening their expectations and comfortable little worlds.

The best I can offer are the following suggestions:
  • Disclosure to Disability Services, which at your college or university should then work to inform and educate professors. However, DS will not disclose your diagnosis, which can complicate matters as much as it helps.
  • Disclosure to a trusted professor within your primary department. A professor might be able to plan ways to deal with other faculty members and your peers.
  • Working with any autism advocacy groups to educate faculty and students.
Honestly, in this environment overreactions will occur. I'm hoping that such reactions won't be widespread or permanently harmful. I do not want any student to go through experiences like mine. We must not allow people to assume the worst of students with any social differences. Being different is not a crime. We must not allow panicked, misinformed people to confuse social awkwardness for danger signs.

I do want to stress that my bad experiences were limited, but they were bad. Maybe knowing about my years here can help someone. I'm not sure it helps, though.

Past posts on my personal experiences:

Survived a Night Out

It is now 10:30 p.m., a bit more than 24 hours from the start of the Christian Kane (http://www.christiankane.com/) concert my wife and I attended Friday night. Kane's music is Southern rock, often with a harder edge. I like "The House Rules" (album and single), though country music is a fraction of my CD collection.

Side note: I still prefer to own CDs and then import at a high bit-rate for iTunes. Also, I still use my CD players for classical and jazz and there is a noticeable difference.

I did well, all things considered, and we did remain through the entire concert. When I was an undergraduate, many years ago, I went to several concerts and regularly went to Los Angeles clubs to listen to music. Because I like jazz and "American standards" (think Sinatra), the places I like most are nothing like country bars.

My ears are still ringing, slightly and my legs are sore. But, I did okay. In fact, I think I did better with the music volume than my wife. The worst thing was the mix of perfumes and colognes. I still can't get some of the strong scents out of my mind. Two women were especially drenched in perfume. Only smokers would have been more annoying. Please, people, you don't need to bathe in perfumes. It gives me, and many others, a horrible headache.

I will admit, today's trip to a mall was difficult because I'm still not relaxed from last night. I really didn't like being in the mall at all. I just wanted to get home as soon as possible. I generally do okay in the larger malls, but today it was crowded and noisy, which was too much after the concert experience.

I would rather have remained home all weekend after the concert, to decompress.

How did I manage to attend a concert in a bar? There were some careful choices made to help with the adventure.

  • I slept in and did little during the day that could cause any stress. I knew concerts like this, as opposed to jazz or classical music, are loud events. It is a country bar, not a martini lounge.
  • I didn't take my iPod Touch or anything valuable that could be lost or damaged. I also selected old cloth gloves with split seams instead of my favorite leather gloves. This turned out to be wise, because my gloves were lost in the coat-check room. I put them in a shallow pocket by mistake, but did secure everything else properly. (The problem with gloves, scarves, jackets, and sweaters is that you have to remove layers once inside. Everyone seems to lose something during the winter.)
  • We arrived several hours before the concert began, which was at Toby Keith's Bar & Grill. This gave us time to learn the layout and adjust to the crowd and noise.
  • We had dinner there, and it was good. I like simple, traditional food and it was good. Eating can be relaxing, at least for me.
  • We found a position at the back of the dance floor, also a good distance away from the bar. This meant that we had open space around us for much of the concert. Only a few times did anyone bump into us, usually on his or her way to the restrooms.
  • We allowed the crowd to rush out, before we did.

Overall, it was a good experience. I don't think we'll do that again anytime soon, but I enjoyed seeing a talented actor/singer in person. If I were to attend another concert, I'd rather it be acoustic.

I have to add that the crowd was great. The people were polite (I was called "sir" several times) and not the slightest bit "rowdy" considering the venue.

Though I need a few days away from people now, it was actually less stressful than public transit.

Friday, January 14, 2011

Heading out of the House

It's not much of secret that while I like to get out of the house (and the city), I don't head for large gatherings of people or loud places. I also don't like driving through downtown where we live. The freeways and their signage were designed to cause accidents, it seems. Maybe the auto-body repair industry donates to local politicians.

But, tonight we are heading through downtown and out to a concert at a local club. It's going to be sensory overload and lots of stress.

It has been years since we were anywhere with live music. Actually, about eight years. Live music is fairly common at some bars and restaurants in our hometown. Some of the music was pretty good, too. But these were not jam-packed clubs with national acts.

I need out of the house, so we'll see how this goes.

The club / restaurant is in a new shopping center, so nothing will be familiar. The menu will be new, since we have never eaten at the restaurant. There are many potential problems with this adventure.

Still, it's a change of pace. I'll reflect on the experience this weekend.

Thursday, January 13, 2011

Autism-vaccine link debunked — too little, too late - L.A. Times

There is substantial blog and Twitter traffic on this issue. Again, not much call for me to comment, as anything I write will be nuanced and not change any minds. Still, this is a good read:

Autism-vaccine link debunked — too little, too late - latimes.com

It's frustrating for any researcher. I've tried to explain quantitative and qualitative research statistics. I've tried to explain science seldom claims to be "certain" — but the public demands certainty, just like they see on television dramas.

Vaccines are valuable, important, and statistically safer than having unvaccinated children in our communities. Nothing, nothing, nothing in life is 100% safe. Sadly, humans are bad at measuring and understanding risks.

Wednesday, January 12, 2011

More on the MMR Scare: Follow the Money

Secrets of the MMR scare: How the vaccine crisis was meant to make money

I'm merely suggesting readers follow the link over to LB/RB for the comments and links. Yes, follow the money. Turns out to be great advice when you wonder why anyone would fabricate data and analyses.

Monday, January 10, 2011

St. Cloud MN Arc Regional Conference

I will hosting a breakout session at this event near St. Cloud, Minnesota:


Potpourri for Providers XII 
Regional Annual Conference 
Saturday, February 26, 2011
Sauk Rapids-Rice High School


You can contact Arc Midstate at:
http://www.arcmidstate.org/

Registration Fee $49 Register Early! Conference enrollment is limited
Deadline to register: February 15, 2011

The presentation will be:

A-4 Autism and Developing interpersonal relationships - This can be a challenge for students and adults with autism spectrum disorders. This frank discussion explores the positive and negative experiences shared by most people, but with an emphasis on how autism is an additional obstacle to relationships. How can family, friends, caregivers, and educators help nurture the skills necessary for rewarded social connections? What are the challenges faced by individuals with ASDs and how can specific challenges be addressed?

If you live in Minnesota, this is one of the best special education and general special needs events.

Wednesday, January 5, 2011

The Truth Won't Matter

I don't think I need to write much. Read the full story at USA Today and I'm sure dozens of other news organizations will have more in-depth coverage.

From USA Today:
Report linking vaccine to autism 'an elaborate fraud'
By Liz Szabo, USA TODAY
January 5, 2011

An infamous 1998 study that ignited a worldwide scare over vaccines and autism — and led millions of parents to delay or decline potentiatly lifesaving shots for their children — was "an elaborate fraud," according to a scathing three-part investigation in the British medical journal BMJ.
Bad science would be enough, but fraud? The article continues:
Now, the BMJ reports that Wakefield, who was paid more than $675,000 by a lawyer hoping to sue vaccine makers, was not just unethical — he falsified data in the study, which suggested that children developed autism after getting a shot against measles, mumps and rubella.

In fact, the children's medical records show that some clearly had symptoms of developmental problems long before getting their shots, BMJ says. Several had no autism diagnosis at all. Wakefield could not be reached by USA TODAY.

Groups of People and Daily Life

In a recent post on the holidays, I mentioned that gatherings of people are often too intense and too stressful for me. I avoid any social gatherings as often as possible, which has implications far beyond my family and holidays.

Consider all the daily events that are really gatherings of people, social or not:

1) School classrooms

It doesn't get any more over stimulating that most classrooms. The K-6 classrooms are the worst for me, with their "neurological stimulation" of name tags, charts, maps, calendars, student art, and more. I felt overwhelmed as a student and I still feel overwhelmed when I enter these rooms as an educator or consultant.

Now, add the students. What was already an overwhelming space can become a nightmare. I've substituted in K-6 classrooms, which seemed to go well enough, but I was ready to collapse at the end of each day. Young children are... well... children. One or two is okay. Twenty? You can't possibly keep them organized, on-task, and clean. Part of teaching is knowing how and when to manage a classroom. The K-6 setting requires gently nudging most students. It's exhausting for a "normal" teacher.

The middle school / junior high, and high school settings are a little easier for me. I've taught English, math, photography, and journalism as a long-term substitute. The rooms are focused on single topics, which I like. But, the students are... teenagers.

Teenagers experiment with dowsing themselves in fragrances, various chemical concoctions, piercings, and so on. They are making statements. Their statements are difficult to decode for mere adults. They talk, constantly. They try to text until you confiscate a phone or two. It's a social atmosphere.

College and university classrooms range from 12-person seminars to 1000-person lectures. You can imagine the odors, the noises, the chatting during lectures, the eating of nacho chips, and so on. College students range from the fragrance-soaked to the non-bathers. Then you have the students who cannot figure out that how they dress conveys a persona. Even as a teacher, I've wanted to tell students that shirts should fit, pants should not fall down, and poor hygiene might explain the empty seats around them.

2) Offices

Offices are like classrooms, but with a lot less order and far more noise. Depending on the arrangement of cubicles, open space, or walled offices, the smells and noises can range from mildly annoying to completely debilitating.

Workplaces are odd social hives. Studies show the average office worker has four to five productive hours per day (seriously, that's it). While waiting for computers, printers, and on-hold with vendors or clients, people in offices chat. They chat a lot. They'll approach for no reason and talk about things about which I could never feign interest.

The people smile and chat about sports, politics, their churches, the latest movies, and so on. There is seldom one conversation; more often it is four, five, or even a dozen conversations. And I'm compelled to try to follow voices and to untangle them so I can figure out what is or isn't important to me. Trying to focus on one person talking to me is frustrating and exhausting.

I want a silent little office and a list of tasks I should complete. Send me e-mail, don't waste my time telling me about Little League games or church events. Please, leave me alone! Go away!

I'm not interesting in being friends with most coworkers. I don't want to learn the office politics. I only want to do my job. Social clubs are for other people, I don't need work to be a club.

The too-loud phone talker, the over-colonged salesman, the woman who chews gum while talking, the man with new baby pictures, the "helpful" gossip who stops by every desk, the nosey tech, the friendly manager. Please, let me work. I don't understand you and don't want to have to keep trying.

3) Shopping almost anywhere

The stress depends on the store type and the customers. Some stores are worse than others. I like the garden shops at home improvement stores. I hate the chemical aisles. I love grocery store bakeries, but I hate to be near some of the "pre-prepared" deli counters that stink of oil and deep fried everything.

The people in some stores keep a nice distance and move politely. The clerks are not pushy, and I can relax.

Then, there is the Apple Store. I love my Macs, but I hate the store on weekends or busy weeknights. When I need something, I go during the day, mid-week. I know success is great, but do I need to share 800 square feet with 100 people, displays, and service counters? It's too much for me. I've walked out more than once to return later.

4) Public transit

I stopped using it. I cannot handle the people. A single bus or train ride can render me useless for two or three days.

5) Government offices

The lines at the DMV, county clerk, et cetera are like public transit.

6) Restaurants

I like the more formal places, because fast-food dining is loud. I can't bear the sounds of deep fryer alarms, microwaves, and other devices. Every fast-food chain is overwhelming inside, so I prefer take-out. Ideally, a drive-through or delivery.

I don't want to deal with children running about the dining area. I don't like the filth most people leave behind, when it isn't that difficult to bus a try to the trash. I just can't stand the muck of most fast-food dining areas.

Semi-formal is much, much better. Most of the time. Then, there is Big Bowl, which has wonderful Asian-influenced meals but imagines itself to be a nightclub. They play the music too loud, causing the diners to speak louder yet. I hate it, but I love the food. During the summer, you can eat outside, but the outside of a mall or strip center often has its own speakers playing loud music, car exhaust, and random groups of loud people walking past the tables.

I also find Don Pablos, a Tex-Mex chain, too loud. The customers get louder and louder. Add in alcohol, and the customers can be especially annoying. They need to turn down the music, too. I prefer smaller, family-owned Mexican places. They tend to be quieter, less crowded, and more attentive.

All three of my favorite places are semi-quiet, dimly lit places with good food.

Unfortunately, I've even had to leave my favorite restaurants because of noise or odors. Too many people is just too much for me, especially if the people are loud. You won't find me at a bar watching Monday Night Football or the Super Bowl. Sorry, just not able to deal with it.

Tuesday, January 4, 2011

Blame the Parent v2.0

For decades, thanks to experts like Bruno Bettelheim and various Freudian psychologists, mothers were blamed for autism. The mothers were too cold ("refrigerator mothers") or too affectionate ("smothering mums"). The child with autism was considered narcissistic, neurotic, or even sociopathic, all because of bad parenting. I've been reading about the history of psychology and it can be depressing. Even 50 years ago seems like the Dark Ages.

Now, we have moved on to Blame the Parent, version 2.0.

How do we blame the parent in 2011? By claiming the parent made bad choices that led to, exacerbated, or in some other way contributed to the situation of his or her child.

A partial list of the blame game.

You shouldn't have…
  • vaccinated your child.
  • received any shots or vaccines. 
  • eaten any fish (or X, Y, and Z) while pregnant. 
  • exercised so much while pregnant.
  • exercised so little. 
  • fed your child X, Y, or Z. 
  • used household cleanser X. 
  • lived so close to a freeway.
  • lived near farmland.
  • taken your child to Dr. X. 
  • tried therapy X, Y, or Z when A really works.

It is actually an endless list. The mother or father is no longer too distant or too affectionate, instead the parent simply made bad, ill-informed, careless decisions.

Exactly how is this a better way to talk to parents about autism? And sadly, the greatest perpetrators of this Blame 2.0 are other parents, including parents of children with special needs.

Sometimes, I get frustrated. How can people be so insensitive? You don't need to tell another parent what he or she did wrong in your mind. Most parents just want a bit of support while trying to do the best they can. In fact, we'd all be better off if some "helpful" people didn't offer any blame disguised as advice.

No parent wants a child who will live a life filled with challenges. Most parents want the best for their children.

Saturday, January 1, 2011

When to Go Corporate

I have read dozens of articles on what people with ASDs should or shouldn't do for a living.

The reality? There is no set group of "best" professions or paths for anyone, including those of us with unique dispositions. We might share some traits, but the notion that we can assume that all people with ASDs are similar professionally is incorrect.

Science and engineering workplaces can be as social, political, and emotionally draining as any other workplaces. Likewise, I have worked in creative settings that were exceptionally calm and ideal for someone like me. Knowing that a workplace is "technical" or "creative"doesn't tell you much about the working environment.

In November, I started shifting my job hunt to corporate possibilities. I had determined that a corporate job might be a better match for my personality. Maybe that won't be the case, but it was starting to seem that the educational positions were too political and ideological to be a good fit.

All organizations, including both corporations and universities, have personalities. Some are more social than others, and social is a problem for me. Any company in which social networking and cheerfulness are keys to promotions and success is not the company for me.

What people don't always realize is that many tech companies are social beehives. Yes, your skills matter, but so does your personality.

But, I found that humanities departments at universities were more social, more political, and more homogenous in several ways. You really do have to be like everyone else to stand much of a chance professionally.

I know I am not a "suit" destined for middle-management. My mind never stops working and I'm not the best at following external rules and routines. I like to establish my own routines. But, there are companies that don't care how you finish tasks, only that you do finish them on time and with excellent results. In general, I've done better in senior positions because they have some flexibility.

The reason I'm interested in corporate settings is that I don't have to be politically identical to my coworkers. I don't have to adhere to any certain beliefs in a corporate setting, short of not being anti-business. In education, I would need to locate a post that doesn't judge me on traits unrelated to teaching.

For now, I don't know if I will end up with any particular job. I had one corporate and one academic interview in December.

The only advice I can give: Going corporate is not good or bad, it is a matter of finding the right place for you as a person. The same can be said of any academic job, as well.