Not Flapping My Lips

9 August 2008 at 5:08 (Autism/Asperger's, Critical Thinking, Stimming, advocacy, attribution errors, developmental disabilities)

(”Flapping one’s lips” is American slang meaning to stand around talking, usually about nothing important, or gossiping, e.g., the disdainful address, “Don’t you just be standing around there flappin’ your lips.” )

“All that is required for evil to prevail is for good men to do nothing.”
~Edmund Burke

“It is very tempting to take the side of the perpetrator. All the perpetrator asks is that the bystander do nothing. He appeals to the universal desire to see, hear, and speak no evil. The victim, on the contrary, asks the bystander to share the burden of pain. The victim demands action, engagement, and remembering.”
~Judith Herman

I’m planning ahead for a script to use sometime again soon, because like many people I suffer terribly from l’Esprit de l’escalier, and can never think of the bon mot or good retort or thought-provoking reply until the moment has long passed …

Sometimes when I get excited, I flap a bit. As in, my hands shake rapidly from side to side, causing my (long, limber) fingers to dually perform that single-handed clapping.  In the recent years, I have learned that “flapping” (done in many different ways) is one of those “stereotypies” associated with autism, or with Down’s, or with cognitive disabilities (mental retardation), or with any number of differences that are often socially ostracised.

Which to me does not make a whole lot of sense.  Seriously, WTF?  It does not harm anyone.  And if you have spent much time in North America and seen game shows like The Price Is Right, then you will have observed a lot of (ostensibly) neurotypical/normal people jumping up and down and flapping in their excitement at being called up to play.  But of course, someone will be sure to point out that is a “special circumstance” and that people who are chosen for the audience are selected because they are excited about the opportunity, and are outrageously dressed, and will generally perform in such highly exaggerated manner, and thus be good television fodder.  Well, perhaps.  But my point is that we all engage in stereotypies. (In a previous post, “Stimulating Topics of Conversation”, I noted that fiddling/stimming is another stereotypy that everyone does.)

Unfortunately, we also engage in stereotyping — it is almost impossible not to at some level, as creating such thought patterns is how the brain organises the world.  But we can be aware of and work against negative stereotypes that are socially harmful.

Of course, to deliver that reply effectively, I have to have a script that is not only thought-provoking and easy to remember (without tripping over the words), but is also SHORT.  And if you have read more than two of my posts, you know that brevity is not my strong suit!

But I know how to get around that in my brain. I turn ideas into bulleted points, which from force of teaching habit makes me distill things into highly condensed form, without a lot of jargon:

  • What exactly are you indicating to me?
  • I am not trying to provoke you, but I’d like you to think about something:
  • Does flapping mean I am stupid?
  • Does flapping mean I cannot do my job?
  • Does flapping hurt anyone?
  • But you are implying those things.
  • Even if you don’t believe them yourself, you are using and reinforcing negative stereotypes.
  • And I don’t believe that helps anyone.
  • So, think about it.

Of course, weeks or months may go by before the next event occurs.  We’ll see if I actually remember the gist of this, and can have enough self-awareness to advocate effectively.

The problem is that I get so in-the-moment that my awareness gets really tunneled — not my vision per se, but my ability to notice what-all is going on, and to also be able to interpret it.  Because of this “tunnelling”,  I spend most of my active processing trying to respond to the event both internally and externally. (Mind you, I’m normally a highly verbal person, so when I start having expressive issues, you know that I’m really taken aback by the situation.)

In this strangely configured moment, when time seems to simultaneously slow down yet slide by too fast, I am:

  1. realising that Yes, this really IS one of those moments, and then in an insecure silent panic, am double-checking my short-term memory to make sure I’m interpreting things correctly,
  2. and remembering Oh! I was going to do something different in response;
  3. and remembering what that was;
  4. and trying to recall the particular wording;
  5. and trying to emblazon some of the key words on my mental desktop so I don’t drop them halfway through the sentence;
  6. and trying to get the words out without losing one, getting clauses out of order, and/or tripping over them by stuttering or mumbling.

From years of speech therapy, I worked really hard to enunciate clearly.  I endeavoured to not use “um”, or “and uh”, what one of my English teachers referred to as “lazy parts of speech”.  Being so conscientious, plus frequently delivering long, scripted, grammatically-correct, fact-riddled announcements full of polysyllabic words earned me no lack of jibing for sounding stilted.  The ironic part is that sometimes I get dysnomic to the point that I don’t even say “um”, or “and uh”, which verbal place-holders would otherwise have alerted others that I was going to finish my sentence, and people have actually wandered off thinking that I was done talking. Not so useful!

Which-all means that by that point I am doing a lousy job of monitoring how others are responding.  Alas, this is the sort of moment when that would be most helpful.  Ditto having my auditory processing on “Record” so I could later reflect upon the chain of events.

Oh, well.  It might not be a “gold medal” response, but I think that recognising the situation and then being able to get my scripted response out is good enough for a bronze.  You think maybe?

3 Comments

The Crystal Ball Crack’d

7 August 2008 at 17:42 (ADD/ADHD, Autism/Asperger's, College/University, Communication, Community, Family, Learning Disabilities, Love & acceptance, OMG, Parenting, Work / Employment, advocacy, attribution errors, developmental disabilities)

The Kid recently took the ACT test, which like the SAT, is frequently used by colleges to determine scholastic abilities, and in his case helped place him for which college writing class he needed.  He had to ask his sister what the test was like, and her impressions about its difficulty level.  I could not personally provide any opinions, because I had never taken the ACT or SAT.

I never took them because no one thought I would go to college.

They made massive assumptions about my abilities and my future. So here’s what happened, and something to think about. I welcome you to please post comments, and more links to other positive blogs and sites.

My grades in secondary school grew worse over the years, and I had to re-take a semester in one class (English of all things, which in later years proved to be ironic when I became a freelance writer, with hundreds of items in print).

By this time in my life, my parents had divorced.  My dad lived in another state, and was even more of a non-player in my life.  Alas, my mother had spent years futilely trying to make me more “normal”, from requiring me to learn right-handed penmanship, enrolling me in a “charm school” at the local Sears & Roebucks to improve my feminine graces, and so on.  But as the years wore on, my faults (problems) became more and more apparent.  She no longer described me as “very bright”, but was quick to list all my failures and describe them in damning detail, until I was ready to vomit or pass out from the stress (though I never did, even though either would have been a relief).

By 9th grade it was apparent to all that I was not gifted scholastically, and the general consensus was that I was lazy, stupid at math, not trying hard enough, and acting up just to make her life difficult.  When she was drunk, my failures and interests and personality traits would be compared to her ex-husband’s, “you’re just like your father, the bastard”.  Even as much of a socially-clueless 14 year old that I was, I knew that these kinds of comments were untrue and inappropriate, and the problem was with her attitudes and her drinking.  But they still hurt, terribly.

I would not be diagnosed with ADHD, Auditory Processing Disorder, and Prosopagnosia until I was in my 40’s.  Such diagnosis hardly existed in those days; certainly my difficulties were not considered to be due to anything but my own personal failings.

No way, my family and school officials decided, could I be college material.  I could not keep track of my assignments, I still struggled to learn and remember my multiplication facts into 8th grade, and I flunked or barely passed classes.

Given my social difficulties and subsequent lack of dating, and even my utter lack of domestic abilities (mom warned me off taking a sewing class because doing so would “ruin my GPA” - grade point average), I was obviously not highly marriageable. This was the 1970s, and most people still thought along those lines — an astonishing number of girls went to college to “get their MRS”.

The goal then was to get me some kind of minimal trade training, so I would, as she fiercely reminded me many times, not be a burden on the family. It was made plain to me that once I graduated high school, and then later turned 18, I was to be out on my own.  I should not expect financial assistance from her.

So I was enrolled in typing, which was a miserable experience beyond the whole ordinary ordeal of learning to type on manual typewriters.  The room was a cacophony of noise.  The instructor was adamant about constant attention to task, proper posture, and graded with the intent on us producing perfection — as soon as a student produced a typographical error, then the score was made. (Additionally, the students’ pages were  held up to the light against her perfect copies to check centering and spacing). There were many days when I would produce an entire page that was otherwise perfect but for a typo in the second line, and my grade would be an F because I had such a low word-count.  Given my problems with developing manual speed, tracking text (near-point copying), attention, and transposing letters and numbers, I struggled to get a C grade.

But the clerical work that was deemed best for me also required taking bookkeeping.  Not surprisingly, this was also a very difficult class for me.  My aptitudes and interests were not really taken into consideration, because after all, even if writing and science and art were what I liked best, I had not done well in those classes, now had I?  Besides, clerical work was what my mother knew, so like many parents she expected me to follow occupational suit.

Unlike many such students, my story has a relatively happy ending.  I did manage to graduate high school, to everyone’s relief.  A year later, I even enrolled in an evening class at the local community college.  College classes were not easy, partly from my intrinsic difficulties, partly from not having the necessary study skills, and partly from not having a solid academic background.

But the glory of the American system is that such colleges provide opportunities for adults of all ages to acquire the these things, and to gain higher education. I worked hard, and slowly figuring out how I learned, which was not always in the ways that others thought I should study.  Sometimes I had to drop a class and re-try it later on, to finish it successfully. Later on in my 40’s I was to also get some of my issues diagnosed.

I now have a Master’s of Science. I teach college students.  No one would have expected this based upon my previous performance. (Employers who place near-complete trust in Behavioral-Based Interviewing, please note!)  And this point, amongst all the others about the perils of attribution errors, and learning disabilities, and dysfunctional families, this point is crucial:

A child’s future abilities cannot always be predicted,

when based upon their current abilities.

Many parents of children who have developmental disorders worry that their children will never be able to attend school, or finish school, or go on to college, or hold a job, or live on their own, or be loved by a partner, or have a family, or talk, or be potty-trained, or any number of milestones.  Just because the child cannot do the same things that their age peers can do, or are expected to do.

This is one of the biggest points of contention or discussion between the “autism community” (parents of autistic children) and the “autistic community” (children, teens and adults who are autistic, and many of whom are parents as well).  Even beyond the farcical assumptions that either community is monolithic with regards to attitudes and knowledge and politics et cetera, there are inherent issues that need to be mutually addressed.

One of the best resources for the autism communities are the autistic communities.  If parents go around just talking to other parents, especially those other parents who are consumed by the “Terrible Tragedy and Selfless Suffering Families” world-views, they may fall prey to this easy assumption:  If my child can’t do it now, he’ll never be able to do it, and our lives will be ruined.

Sure, not everyone takes it to that extreme.  Sure, there are a few children who do not achieve many of those life-goals.  But those lack of achievements does NOT automatically mean that their lives are ruined, or their families’ lives are ruined. They do NOT automatically mean that people cannot live relatively happy, healthy, and productive lives.

Please do NOT assume that not being able to use speech as a reliable means of communication is the same as not being able to think, or not being able to communicate, or not having anything to communicate.

Please do not assume that because a child does not learn in a traditional manner that they are learning “the wrong way”, or that they cannot learn at all, or that they must be taught “remedial learning lessons”.

Please do know that even when children have problems, and are slower to acquire skills, they are not doomed.

Please do not give up on them.

“Don’t talk to me like I’m an idiot.”

~First words (at age 35) of an autistic man [quote source]

I welcome you to please post comments, and more links to other positive blogs and sites. Kindly see the newly-updated “NOTES TO COMMENTERS” box in the top of the left sidebar for important information. Read the rest of this entry »

5 Comments

Hate crime spinning out of control

25 July 2008 at 4:55 (Autism/Asperger's, OMG, Stimming, hate groups)

I spent many happy hours spinning around in circles as a child: on the front lawn with arms flung out, on the back yard swing, wheeling in circles on my bike at the end of the cul-de-sac, circling with one hand clinging to the post that held up the floor joist I-beam in the basement, and of course, on the small merry-go-round of the gradeschool playground. Spinning is fun!  (Especially so if you can do so for long periods without even getting vertigo.)

But none of our neighbors ever threatened to burn down our house because I was twirling around and around and around and around and around and around and around and around and around.  Not like this horrific man in Seattle, Mark Joe Levison, who apparently found the sight of a 13-year old boy, Anthony Engen, playing outside or (oh-my-gosh!) looking at his yard to be too antagonising.

The only redeeming features in such a news item is that the police took his threats seriously, as apparently the man has quite the record of charges for assault and felonies in two states.  Moreover, he has been charged with “malicious harassment”, which is Washington’s hate-crime law.

Yes, a news source is actually referring to such threats made against someone just because they are obviously autistic as a hate crime.  Sadly, I am noting this because it is not common.

(Where are we going, and what are we doing in this handbasket?!)

19 Comments

Cartoon: “Efficiency”

16 July 2008 at 6:20 (Autism/Asperger's, Communication, Humor/ Fun Stuff, Prosopagnosia, Work / Employment)

This cartoon is composed of four pages,

each of which bears a caption at the bottom of the page.

What, weighting scores?

Andrea’s Buzzing About: “Efficiency” A female Geek and older female User are seated at a desk, where the Geek is giving the User some instruction in how to use a program. A male Techie stops by the door. Geek to User: "... so you need to set up a user file with the ID 'foo@farble'; save that before moving onto the next step. --Yes?" Techie to Geek: "Here is the report doc." Geek to Techie: "Did the update load?" Techie replies: "Good-for-go with 3.0; included in the backup." Geek replies: "Excellent, thank you." The Techie leaves without further ado. Geek continues to User: "Now, the next step is to set up the database; you can do this with weighted or unweighted scores, the former being used for --" User: "How rude!" Geek: "What, weighting scores?"


Read the rest of this entry »

6 Comments

Stories of Yesteryear (II)

12 July 2008 at 20:21 (Autism/Asperger's, Family, Humor/ Fun Stuff, insects)

I found these several-years-old tales while looking for something else — you know how that goes!  Meanwhile, I have a report, a PowerPoint, an assignment, a summary and remarks to complete in the next 48 hours, so once again there’s not much time for new stuff.  However, I have found the background material to answer someone’s ADHD question and will post that in a couple of days.

(Previous Stories of Yesteryear.)

It is Saturday evening and we are having a family movie night.  I have made buttered popcorn, and remembered to put the lid on the air popper this time!  My son has made a pitcher of lemonade, and daughter is busy digging through the piles of VHS and DVDs.  Our video cabinet has an almost surreal quality – like the wardrobe that leads to Narnia, it seems bigger on the inside than the outside, and more than once most of my  daughter has disappeared within its depths as she digs through the movies.

After much vociferous discussion we decide to watch a Star Trek show, the Deep Space Nine episode “Trials and Tribblations”.  We have all see this episode several times, and are delivering the especially funny lines of dialog along with the actors, as well as making accessory comments along the way.

In the show, Odo and Worf are at the bar, trying to not to stand out, but being aliens, failing to do so.  “You know,” I remark during an action lull, “I always sympathized with Odo – he tries so hard to fit in, but never quite makes it.”

My son laughs, “Just like you, Mom.”

And I grin at him. Read the rest of this entry »

5 Comments

Mental Menus

1 July 2008 at 3:05 (Auditory Processing Disorder, Autism/Asperger's, Communication, Humor/ Fun Stuff, migraine)

(WARNING: This is one of those posts that starts off tangentially. Sometimes that’s the way communication works.)

If you peruse the books in the travel sections of stores and libraries, you can find pocket-size volumes of useful phrases in different languages. While pantomiming works well for some situations*, there are times when having the actual word is best for all concerned. (For example, being able to ask a shopkeeper, “Tampons?”)

* I believe it was travel writer Rick Steves who noted that one does not always need a phrase book — merely pointing at your injured foot and screaming does get the point across just fine.

Sure, there are plenty of little words of politeness that are great to memorise, please, thank-you, excuse me, and the rest. But these little bits do not a conversation make. And anyway, phrase books are always of limited use; anyone who has tried such can explain the inherent problems that result by being about to make statements or ask questions, but not being able to understand the answers, or know what you are to do with the other person’s reply.

And that’s where we sometimes end up when wandering through the awkward territory of small talk. As I have blogged on before (“Small and Medium-size Talk”), the big sorts of talk, those that are the exchange of real information on subjects of mutual interest are generally rather easy — it’s the medium-size talk that is the social dance of chit-chat which is fraught with difficulties.

But there are days when the very-small talk of passing through and exchanging greetings seems to be a strain. Read the rest of this entry »

3 Comments

Talking to Strangers

18 June 2008 at 12:46 (Autism/Asperger's, College/University, Communication, eye contact)

So, the Kid is easing into classes at the local community college, with plans for taking the fall semester part-time and working. The inevitable What-To-Take? question came up, with the idea being that a couple of classes should be general-education requirements, and the third something personally interesting. Well, I said, you should see what courses are required for an Associate’s Degree. (A 2-year general education diploma, which can transfer to a four-year degree elsewhere).

This is all well and fine, and various categorical listings are perused until realisation set in: some kind of Oral Communications credit is needed, such as Interpersonal Communications or Public Speaking classes. Oh noes!

Why do I have to have a speaking class? complained the Kid.

To be sure, many people dread taking their college Public Speaking class. Psychologists tell us that a dread of speaking to large groups of strangers is common, right up there with a fears of heights, spiders, or thunderstorms. Then again, the average citizen did not have a preliminary diagnosis of Social Phobia.

I remembered the teacher’s comments on the Kid’s earlier oral presentations in school: Need to make eye contact. Remember to speak up. Use gestures, interact with the audience. Those comments had stuck in my mind, as about that time in history I was beginning to put things together and wonder if my own kid didn’t have a bit of Asperger’s. Sure, there was eye contact with family and the couple friends. But the general hanging quietly around the edges of large family gatherings was long ingrained, and by secondary school the strong reticence for striking up conversations with strangers or for joining school or civic clubs, was both inhibiting and inhibited by social interaction.

I also remembered these same types of comments on my own class presentation grade sheets, back when I was in primary and secondary school. I offered up some personal history, I remember taking Public Speaking when I was just a clerk, and I could not imagine when I would ever have to give a talk, much less who I would give it to, or what I would talk about. Of course, I have since given presentations to groups of hundreds, and been doing public speaking for over 15 years. Life has a way of zig-zagging and putting one in unexpected situations, where any previous skills may suddenly be useful.

But teens don’t find such parent comments to be useful; they’re always stories from Long Ago And Far Away, and have no conceivable bearing on the teen’s own future life. Such are the limitations of teen perceptions of both personal histories and of the possibilities of Life in general.

The Kid looked through the rest of the general education requirements, and under the Social Sciences section, came up with an introductory course in Economics. (I had always considered Econ to be within the realm of Maths, but I wasn’t the one making these lists up.) Econ was full of equations and would be easier for the Kid to digest conceptually than all those inscrutable sociological subjects. Okay, I replied, Econ is good; it will transfer anywhere. And for the personal interest course?

The introductory computer game design class, came the answer.

Of course; silly question. What else has the Kid been focused on for years now, but all flavors of card and video and online gaming, including working up the algorithms, character weightings, and testing of a home-made card game.

Then I had a brain-flash, You know, if you’re taking this class, why don’t you see what Associates degree program it goes with? You don’t have to do the whole program — you can try it and see if that’s what you want. But it would make sense to see what the requirements are for the program, so you don’t take stuff that doesn’t work toward it.

This made sense; who wants to take extra classes they don’t need? We noodled around and found the program, and looked over the requirements, noting that this class was one of the prerequisites necessary before even applying for the program, and –

OH! Hey, look! I pointed out to the Kid – There are no oral communication course requirements!

Someone out there realised that geeks are not going to want to take such classes, and found other courses more suitable to their future careers. Oh, happy day! Further examination of the requirements meant dropping and adding various classes, until a workable combination of time slots and still-open sessions was created. We also toured the bookstore to see how bad the damage to the pocketbook would be, and were delighted to find that the three classes would require no more than $100 of books, which is about half of what most courses require. At last, the Kid had enrolled in classes for the fall semester, and even found a career goal to try out.

And a class in Public Speaking is not even required.

4 Comments

Bits and Pieces

4 June 2008 at 4:56 (Autism/Asperger's, Circus of the Spineless, Communication, Humor/ Fun Stuff, Hypermobility, Prosopagnosia)

I’ll never earn a Good Blogkeeping Seal of Approval* if I don’t get around to mentioning these diverse pieces of news!

I am remiss in mentioning Greg Williams’ wonderful cartooning work; he does a weekly piece called “Blogjam” for the Tampa Tribune (Florida newspaper), where he illustrates people’s stories as described in their blogs. Recently he did one based up my prosopagnosia page, “I’m Strange, You’re A Stranger”.

There are updates on my Hypermobility page for the curious, including handy-dandy medical information links for those who “Need more input!” (An “Ooh, shiny!” for whomever can name that movie reference?)

The latest Circus of the Spineless is up at the Seeds Aside — my antennae are all a-quiver with excitement. Such great reading for wasting time relaxing after a long day’s work, especially if you are also “feeling sluggish” like some of us.

My mum used to tell the tale that as a mere tot I tried to check out (shoplift) a book of dirty limericks. Of course, everyone assumed that I couldn’t read them … those limericks came back to haunt me when Akusai produced the 87th Skeptic’s Circle: Dirty Limericks Edition.

And just for fun, the connection with Asperger’s has been made before, but A. A. Gill does it best of all.

* No, I don’t think there really is a GBSoA — and I certainly wouldn’t apply for a housekeeping seal with the amount of clutter everywhere from these three dozen ongoing projects!

3 Comments

Mend the Link

25 May 2008 at 16:44 (Autism/Asperger's, Community, Teaching/Tutoring, abuse, advocacy, inclusiveness)

A horrifying news story: a little boy in Florida kindergarten class was publicly humiliated and ostracized by his classmates, at the urging of their teacher.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

There are so many ways to mistreat those who ought to belong somewhere. These means of intolerance, of expressing prejudice, range from the most passive to the most active. But even the passive ones are cruel when they are intended to be exclusionary. The outright active ones are the most vile.

You can be Read the rest of this entry »

7 Comments

Hate Speech: Not Just For Strangers Any More

18 May 2008 at 19:52 (Autism/Asperger's, Cognitive biases, Love & acceptance, advocacy, hate groups)

(Apologies for unsettling anyone’s recent meal.)

My news aggregator came up with this doozy of a quote the other day. It was an editorial reply to an article about Kathleen Seidel, and I’m not going to quote the entire letter. (Follow the link to read it yourself — if you want to reply to the author, do so on that newspaper’s reply page.)

I am one of those parents who has watched my autistic son go from being a vegetable to becoming human, thanks to chelation.

Okay folks, let’s get this straight.

These are vegetables:

These are children:

It is quite insulting at the personal level, and damaging at the social level to describe people with autism or another other condition as being “vegetables”. Doubtless the author believes that their child has improved due to the effects of an unproven “treatment” for an unsubstantiated diagnoses (e.g. autism as mercury poisoning from vaccines). But even if the diagnosis and the treatment actually had any factual basis, that would still not make such comments appropriate.

How would YOU feel if your parents described you as a “vegetable”?

Or as “having rotting brains”?

Or as a “train wreck”?

Or that your condition “relentlessly sucks life’s marrow out of the family members”?

Or as “an empty shell”?

Or as “soulless”?

Or that “Autism is worse than cancer in many ways, because the person with autism has a normal lifespan”?

Or as having “mad child disease”

Or that you “would have been better off aborted” because regardless of your aptitudes or potential skills, your existance is automatically assumed to be a “burden on society”.

I’m not making these terms up; you can google them. People with disabilities face enough stereotyping, discrimination, abuse, bullying, and are murdered more often than those without. (I’m not using hyperbole; click here or here.) Describing disabilities in such sensationalistic terms and derogatory ways does nothing to help people become better educated, better integrated into society and employed, or become better accepted in their schools, workplaces, social organisations and families.

More than that, one really has to wonder, What kind of parent describes their child in such insulting ways? And does so to the entire world? Such treatment to children over their lives does not bode well for their psychosocial development, that’s for sure.

When you hear people describing their family members, their students, peers, coworkers, or anyone else they know in such terms, take a moment to ask them,

  • Why they use such descriptions?
  • Do they really believe it, or are they just repeating something they’ve heard?
  • Would they want to be described that way?
  • How else can they describe their frustration or disappointmnet with events in life without insulting people like this?

But most of all, we need to be mindful when we speak up about such hate talk, and not use similarly disparaging terms. We don’t want to become that which we despise.

(A request to people commenting: please use appropriate language — follow the guidelines described in this post.)

8 Comments

Potpourri

2 May 2008 at 22:17 (Autism/Asperger's, Vaccines, advocacy, epidemiology, injustice)

Updates on several stories:

In a post from almost a year ago (“That Kind“), I discussed three cases of discrimination against autistics. Cindy Earnshaw was an animal control officer and has Asperger’s, and is now filing a suit against her former employer, the city of Overland Park.

Another old post (the wheels of law grind v e r y slowly, indeed) was about “Waiting For GINA”, the Genetic Information Nondiscrimination Act.  The bill passed the House of Representatives last year, and has just been passed (unanimously!) by the Senate, and awaits signing by Dubya.  Keep your digits crossed or whatever … 

More good news:  just in case you were flying ’round the dark side of the moon and somehow missed the news, Kathleen Seidel has won her Motion to Quash the absurd SLAPP-type subpoena against her, which also required information related to dozens of bloggers from her of the Neurodiversity.com Weblob blogroll, including myself.  w00t!  

An update to a recent post, “A shot in the arm, A slight kick in the butt” about vaccine hysteria and rising rates of highly-infectious and dangerous diseases.  A couple years ago we had mumps breaking out in several states, and now there is largest outbreak of measles since 2001, with at least 72 people in 10 different states around the country reported as having been infected (mind you, that’s just the rate of officially diagnosed and reported, which may be less than the actual prevalence), and of those people, 14 are so ill they had to be hospitalized.  The article states, 

Before a vaccine was introduced in 1963, more than half a million people got measles in the United States and 500 died annually. Thanks to the vaccination program, measles is no longer endemic in the United States, and ongoing transmission of the virus was declared eliminated in 2000. 

Of all the infectious diseases that can be prevented by vaccine, measles was and still is the most deadly, and is the cause of half of the one million deaths that could be prevented. The World Health Organization says that,

Children usually do not die directly of measles, but from its complications. Complications are more common in children under the age of five or adults over the age of 20.

The most serious complications include blindness, encephalitis (a dangerous infection of the brain causing inflammation), severe diarrhoea (possibly leading to dehydration), ear infections and severe respiratory infections such as pneumonia, which is the most common cause of death associated with measles. Encephalitis is estimated to occur in one out of 1000 cases, while otitis media (middle ear infection) is reported in 5-15% of cases and pneumonia in 5-10% of cases. The case fatality rate in developing countries is generally in the range of 1 to 5%, but may be as high as 25% in populations with high levels of malnutrition and poor access to health care. 

I’ve also previously described the various fallacies around the conspiracy theories related to vaccines in my post, “Epidemics of bad science, vs Epidemics and bad science”. There have been studies done in four countries showing no causality between vaccines and increased rates of diagnoses of autism spectrum disorders.

Well, off to deal with the crisis du jour … more later.

 

Comments

12 Ways to Annoy Your Asperger’s / Autistic Pal

18 April 2008 at 5:17 (Autism/Asperger's, Humor/ Fun Stuff)

(Not in order of importance.)

1. Make chit-chat about events in the news related to sports, celebrities or other obscure pop-culture subjects before the first cup of tea or coffee.

2. Insist on eating out at Chuck-E-Cheese or a similar place full of flashing lights, competing noises, and crowds of loud, shrieking children running around.

3. Serve them a meal composed entirely of new, unfamiliar dishes.

4. “Hey– hey– space cadet — snap out of it!”

5. Schedule a trip with social events all day and evening long.

6. Announce that anyone who can’t tolerate certain kinds of fabric or clothing styles is just being picky

9. Install a major software update (or change other settings on their computer software) because you think it will “make their life easier”.

10. Give them a surprise birthday party after a long day at work (school).

7. Put things out of order.

11. Dismiss their special interest as being stupid.

12. Deprive them of internet access.

32 Comments

More “Trap Bias”

11 April 2008 at 5:45 (ADD/ADHD, Autism/Asperger's, DSM, Dyscalculia, Dyslexia, Gender / Sexuality, Learning Disabilities, Mathematics And Statistics, epidemiology)

Whenever I read statistics about the “increasing rates of autism”, I heave a big sigh. Those statements invariable contain a whole number of assumptions, many of them flat-out wrong, or at least unexamined. In the epidemiological data, there are diagnostic issues and census issues and statistical issues and of course, the inevitable agenda issues in the reportage of the census results and analyses. I’ve previously discussed a number of these problems, including incidence versus prevalence, and correlation versus causality in the post, “Epidemics of Bad Science vs Epidemics and Bad Science”

What I would like to address today is a related issue with diagnostics and perceived prevalence, meaning, “How do we know who has autism or AD/HD or a learning disability, and how many such people are out there?”

In entomology (and in other zoological branches) we have a concept known as “trap bias”. There are a number of ways of taking a census of an animal population, including using traps. A “trap bias” means that the kind of trap you use to census a population will limit the responders to your census, and thus create unintended biases in the results.

Now, if a few synapses in your brain just fizzled from that wordy definition, let’s try a simple example. Read the rest of this entry »

2 Comments

One in the crowd

9 April 2008 at 6:00 (Autism/Asperger's, Community, injustice)

Look at all those honeybees, buzzing around the hive! One of them is named Kathleen. (Can you tell them apart? I sure can’t — they’re all sisters.) So where’s Kathleen? “Yoo-hoo! Which one of you is Kathleen?”

“I am Kathleen!”

“I am Kathleen!”

“I am Kathleen!”

“I am Kathleen!”

Expect to see a lot of blogging bees styling themselves as Kathleen, a la “I am Spartacus.” (Or check out the LOLcat by DKMNOW.)

Due to scholastic issues, I am late making this post. If you’ve not already heard, a blogger, Kathleen Seidel of the Neurodiversity.com weblog, was recently served with a subpoena by a lawyer in a current case. Kathleen has long blogged about the lack of scientific credibility of the vaccines-cause-autism idea, and the court case deals with such. As a citizen-journalist, Kathleen has commented upon this case and others like it, and her posts are copiously annotated with the supporting references from public domain documents. Other bloggers with legal backgrounds have commented that this kind of legal action seems to fall into the category of a “SLAPP”, Strategic Lawsuit Against Public Participation:

This form of litigation is frequently filed by organizations or individuals to intimidate and silence critics or opponents by burdening them with the cost of a legal defense so that they abandon their criticism or opposition.

Walter Olson of the Overlawyered blog calls the subpoena a “fishing expedition” and “intimidation”. Not only are the demands in the document incredibly broad and laboriously demanding, they are simply irrelevant to the case. Kathleen asserts that she is not involved in the case, and she does not have any special information relevant to the case.

As she stated in her reply (a “motion to quash”),

9. The subpoena commands production of “all documents pertaining to the setup, financing, running, research, maintaining the website http://www.neurodiversity.com” - including but not limited to material mentioning the plaintiffs - and the names of all persons “helping, paying or facilitating in any fashion” my endeavors. The subpoena demands bank statements, cancelled checks, donation records, tax returns, Freedom of Information Act requests, LexisNexis® and PACER usage records. The subpoena demands copies of all of my communications concerning any issue which is included on my website, including communications with representatives of the federal government, the pharmaceutical industry, advocacy groups, non-governmental organizations, political action groups, profit or non-profit entities, journals, editorial boards, scientific boards, academic boards, medical licensing boards, any “religious groups (Muslim or otherwise), or individuals with religious affiliations,” and any other “concerned individuals.”…

15 … Plaintiffs and their counsel seek not only to rummage through records that they suspect pertain to themselves, but also through my family’s bank records, tax returns, autism-related medical and educational records, and every communication concerning all of the issues to which I have devoted my attention and energy in recent years.

This is an incredible amount of documentation. Who would even keep all of these kinds of records? Many sorts of library searches do not give you “receipts”. And, as originally cited in the subpoena, what sort of search engine is “Lexus Nexus”, an automotive dealership? They probably mean LexisNexis(R), as Kathleen properly refers to it. (Spelling error or Freudian Slip?) And what’s with the “religious groups (Muslim or otherwise)”? Her religious affiliations (or lack thereof) have no bearing on the lawsuit.

The subpoena itself lists in those requested documents, “written or verbal communications” between her and a very, very long list of people or groups, which reading through is quite quickly apparent simply her blogroll, meaning all the 100+ blogs that she has links to on her sidebar. Mine is one of that large number, probably because my blog is listed in the Autism Hub feed. Mind you, I have never even mentioned anything about this particular court case on my blog.

So, disclosures: I have no special information about this court case, and I don’t even know any of the people involved. I don’t even know Kathleen personally, and have never met her. I do not work for her or for Neurodiversity.com, and have never even been to New Hampshire. I’ve probably made a few comments on her blog, as I’ve made comments on all sorts of blogs across the World Wide Web, but her blog is not listed on my blogroll. I do have a family member diagnosed with an ASD. I work in school settings with students who have various educational needs, including ASDs. I do not work for a law company, for a pharmaceutical company, or for a medical company.

Asking Kathleen for the least crumb of communication between herself and the numbers of people mentioned simply because they are on her blogroll is absolutly nutz. Can you imagine how many endless pages of paper all those requested documents would be? (What if you printed out every e-mail you had ever sent or received? Do you keep every e-mail you have ever sent or received? Neither do I.)

The responses to this action in the blogosphere have been incredible; big names like Pharyngula, Orac, and Steven Novella have taken time to comment upon action. Liz from I Speak of Dreams is keeping a running list. I too think the legal action is absurd.

One bee from the hive stops to turn over. Instead of being able to look at the viewer, she is displaying her underside, and we have a great shot of a bee’s ventral abdomen, essentially her rear end. Yeah, check out THAT waggle dance, folks.

8 Comments

More Cross-Cultural Communiqués

22 March 2008 at 18:15 (Auditory Processing Disorder, Autism/Asperger's, Communication, Work / Employment)

What do you do when you are trying to get a technical project started, or get feedback on it partway through, or even get it finished, and some of the people with whom you work have this strange inability to just reply to an e-mail or memo ? You need information — simple data, and maybe a higher-up’s preferences — so you can perform the tasks for which you were hired. That’s what you are there for. Why is it so hard to get simple answers? (One feels like Johnny-Five from the movie Short Circuit, “More input!”)

Asperger’s / autistic employees everywhere express this same complaint. Just give me the information so I can do my job. But what if you also have Auditory Processing Disorder as well? The Unruly Asides blogger ran into this recently, where she describes in a recent post how all she needs is some responses from a board member to produce a video. But the other person won’t simply reply with the required information in an e-mail. They want to chat. On the phone, because they don’t even work in the office. Oy!

If you also have APD, you need information given in a manner that doesn’t work against you and make things more difficult. You don’t want to appear foolish, forgetful, rude, or uncaring because you are having problems simultaneously Read the rest of this entry »

2 Comments

Transitions, ACK!

16 March 2008 at 22:29 (ADD/ADHD, Autism/Asperger's, Coping strategies, Parenting, Stress, Teaching/Tutoring, Work / Employment, meltdowns)

Read up on descriptions of students with autism, Asperger’s, or Non-Verbal Learning Disorder, and you find the familiar piece about how such people “have rigid routines” or “cannot deal with changes in routine”. Some of those descriptions are um, much more rigidly defined than others. I have real problems with descriptions that use a lot of always or never, as real humans just aren’t that binary. In such cases, the author is being more literal-minded than the group they are describing!

In contrast, statements worded as, “Dislikes changes in routine” or “Has difficulty with unexpected changes in routine” would be much more accurate, especially with regards to the unexpected changes — you can brace for, and plan ahead for expected changes in routines.

Therefore, consistency in routine is suggested as a good instructional, parenting, and employment tool. It’s also recommended for students with AD/HD as a support measure.

But you know what? Everyone is attached to their routines. We like to get through our morning preparation without a lot of glitches. “OMG, we’re out of coffee!” We expect holiday celebrations to go a certain way, and when two people become a couple they find out how many rituals were specific to their own families of origin, and then the couple has to decide how they are going to select and combine both of their rituals.

People in general don’t like having to adjust their day around massive changes in their schedule, and are more than a little vexed at unexpected and unavoidable challenges thrown in. Airline travel went from something exciting to a dreaded ordeal as airport security became tighter and tighter, and the airlines restricted what kinds of and how many comfort objects people could bring with them on the plane. No, “comfort objects” aren’t just teddy bears or worry-beads; a wide variety of mundane objects like your favorite bed pillow, brand of soda and portable music player are also comfort objects.

So why are some people so much more attached to their routines, and then undone when faced with changes?

There are a several reasons, related to situational decoding, compensating, and attention-switching. Read the rest of this entry »

Comments

You mean he’s not bi?

2 March 2008 at 3:54 (Auditory Processing Disorder, Autism/Asperger's)

File this one (like SO many things) under, “Things the rest of the world already knows about, that I just discovered” …

But first, a wee back-story is necessary. On the other side of a wall in the college tutoring room is the prep room for the cafeteria. The cafeteria workers like to listen to the radio, especially an “oldies” station. Every now and then we get treated to noise bleed between the rooms, especially on the weekend when they assume that no one’s in the tutoring room.

Today I had to stand and present (lecture) for five hours. There’s an hour’s break between the two classes for me to eat lunch, change rooms, and get set up all over again for the second class. Sometimes I take lunch in the second classroom, but when I heard one of the morning students say that she was also taking the afternoon class, I knew I had to seek refuge elsewhere. Lunch time is when I get some very-necessary “down” time to rest my voice, be alone, and de-stress by sitting and rocking and cruising the ‘net. I like answering questions, but I really don’t want to spend my precious down time trying to engage in idle chit-chat.

So I sought refuge in the empty tutoring room where I could eat alone and use the computer. Meanwhile, the cafeteria people were clattering and chattering on the other side of the wall, with the radio playing. Halfway through sliced peaches I froze, catching fragments of a song I hadn’t heard in years. I jotted a note to myself to look up the song later on. Because Yes, I have discovered that there are several sites on the Web where people post song lyrics. Amazing! Though, not surprising — you can find dang near anything on “Teh Interwebs”.

One of the problems with my Auditory Processing Disorder is that I cannot understand most song lyrics. There are only a few performers whose vocal range, diction and instrumental styles mesh to create songs that have intelligible lyrics, rather than what I usually hear, which is music with words mingled (or mangled) into the sounds of the instruments.

So for the past year I have been hearing old songs, jotting down a few key words, and then later on typing those keywords into the iTunes store in hopes of getting something close enough to yield an accurate result. (Sometimes the results are painful. It’s not that I don’t get results, but I have found that there are a lot of songs with “covers” by various performers. For all I cannot understand the lyrics, I do have a sharp sense of pitch and hearing someone else’s voice and all the minor differences in instrumentation makes those recordings just sound all wrong. Like an “imprinted” goose, there’s only one True Version for me.)

But usually I find what the song title is. And the performer! And the band! You see, all through school I did not know most of the music I was hearing. It never seemed to be announced when I listened on the radio, and I lacked the social circles that would have introduced me to the pop music culture.

While sitting there eating the rest of my peaches I strained in vain to catch the lyrics. Sure, there’s that wall between us, and the cooking noises. But this was also a song I had heard numbers of times back in the early ’70’s. No good, I was already feeling glazed over from the morning, and caught nothing more than I had in previous years. And then the song was over, and it was time for me to pack up my lunch, and get ready for the next two and a half hours of being entertaining and constantly engaged with a group of strangers.

Hours later I’m finally back at home, having made soup to sooth my throat, and I noodle through iTunes. Ah-ha … it’s “Solitary Man” by Neil Diamond, one of those performers that I am now beginning to recognise as the sort for whom I only care for a few of their songs. I liked this song as a child because By gum, here was someone singing about being a solitary person! Meaning, I wasn’t the only solitary person out there.

Finishing up my soup, I looked up the lyrics. Boy, I was off worse than usual. You know, there are some songs that are notorious for being misunderstood by lots of people; apparently entire audiences mis-heard Jimi Hendrix sing, ‘Scuse me while I kiss this guy in “Purple Haze”. The difference is that I misunderstand almost every song I’ve heard. The others where I don’t misunderstand a number of words are the ones where I can’t even catch enough words to guess at phrases.

Like this one. A decade after it was released, I was a more sophisticated young adult and getting better at catching words among background noise. I figured out more about the story behind the lyrics that bracketed the chorus. Well, I thought the protagonist was bisexual, because this is what I had (by then) puzzled out the rest of the words to be:

Bewilderment was mine
‘Til the time that I floundered
Holding Jim, loving him.
Then Sue came along
Loved me strong, that’s what I thought.
Me and Sue, liked that, too.
Don’t know that I will, but until I can finally
Agree to stay and won’t play gay.
Remind me,
I’ll be what I am:
a solitary man, a solitary man, a solitary man.
I’ve had it to here, bein’ where love’s a small word,
Part-time thing, hate or rain.
I know it’s been done, having one girl who loves you,
Right or wrong, we’d go strong.
Don’t know that I will, but until I can finally
Agree to stay and won’t play gay.
Remind me,
I’ll be what I am:
a solitary man, a solitary man, a solitary man.
(et cetera — repeats)

I was just a little off. Well, conceptually, a lot off. Here’s the real lyrics:

Melinda was mine ’til the time that I found her
Holdin’ Jim
And lovin’ him
Then Sue came along, loved me strong, that’s what I thought
But me and Sue,
That died, too.
Don’t know that I will but until I can find me
A girl who’ll stay and won’t play games behind me
I’ll be what I am
A solitary man
A solitary man
A solitary man
I’ve had it to here - being where love’s a small world
A part time thing
A paper ring
I know it’s been done havin’ one girl who loves you
Right or wrong
Weak or strong
Don’t know that I will but until I can find me
A girl who’ll stay and won’t play games behind me
I’ll be what I am
A solitary man
A solitary man
A solitary man
(et cetera)

Funny thing is, sometimes I like my versions better. They’re often a lot more interesting …

9 Comments

Time to go

29 February 2008 at 6:31 (ADD/ADHD, Autism/Asperger's, Coping strategies, Home stuff, Work / Employment)

“How long can it take to walk out the door?”

Other people ask us this. They are incredulous as we struggle to get to places on time, much less with all the materials we needed to have.

We also ask ourselves this when we are getting ready or planning. Surely, we think to ourselves, merely walking out the door and getting into the car takes almost no time at all.

As if!

And that’s why we struggle to get to places on time.

It takes us far longer to “get our shit together,” to remember everything we need, and then get into the car, and unload all the baggage, settle down, and get ready to drive. The least speed-bump in the getting-ready process (like a mislaid car key) throws everything into chaos, which stresses us beyond dealing with that little event, often resulting in getting so distracted from our tediously-created coping methods so that we forget something we usually can remember, or almost-forget and have to go back in (maybe more than once) to fetch something nearly forgotten.

Take a deep breath.

Let it out slowly.

Yeah. Just thinking about these situations reminds us of all those crazy days, weeks and months and years of them. We remember all the scolding, the embarrassment of being late, of missing appointments, of getting to places without something important or even the most necessary thing that may have been the reason for us going there in the first place.

Just being stressed about trying to leave on time makes things worse; the clumsiness increases. Even after finally getting ready one morning (in N-recursive steps, as usual), Read the rest of this entry »

4 Comments

De-stressing with O.T.S.

28 February 2008 at 0:29 (ADD/ADHD, Autism/Asperger's, Stimming, Stress)

Funny short story:

Hubby and I are at the local pub having a Guinness. Naturally, the big-screen televisions are on, and he asks me, “Are you watching the basketball game?”

Are you kidding?! I think to myself, and answer, “No.”

There’s a slight pause, then he asks, “Are you staring at the ceiling fan?”

Busted!

Well you know, I’m there to relax, right? Chatting with hubby about life, and enjoying my ale is only part of that.

A pal of mine is very stressed. Sadly, this is a common problem. But even worse, over the years the repertoire of natural coping methods have been so discouraged, extinguished or suppressed that my pal can hardly name what is helpful. Now that is really sad.

We all have ways of dealing with stresses. They can be roughly divided into three general categories: organisation [O], timing [T], and soothing activities [S]. I have denoted each with an initial because the text flow did not easily lend to listing these in categorical sections.

Prevention [O]: We avoid situations that we know will be stressful. Sometimes we can have someone else do a task for us, or set things up so the task does not actually have to be done.

For example, Read the rest of this entry »

7 Comments

A shot in the arm, A slight kick in the butt

18 February 2008 at 20:23 (ADD/ADHD, Anti-Quackery, Autism/Asperger's, Communication, Community, epidemiology)

Last week I took two of our cats to the vet for their annual check-ups, including the Rabies, Feline Distemper, and Feline Leukemia vaccines. Some years ago we lost one of our cats to Feline Leukemia; the poor kitty died just a few months before the vaccine was available.

This Saturday past I reminded my gardening students that if they cannot remember when they last had a Tetanus booster, they they should go and get one, because a booster is recommended every ten years. The number of people to have survived Tetanus is vanishingly small; it’s pretty much a death sentence. It’s also easily prevented by a simple vaccine. Sure, your arm is a bit sore for a couple of days, but that beats dying an extremely painful and highly unnecessary death. As I reminded my students, “You get your pets vaccinated, you get your children vaccinated, so you should get yourself vaccinated!”

Except there are a few people who don’t want to get their children vaccinated. A drop in vaccinations means not only that some people get sick, but a drop in vaccinations also means a loss of “herd immunity”, meaning that most of the population is not immune, so there are enough people who can catch and then transmit the disease. When you make a decision to not immunise, you are not making a decision that affects just you and your children. You are a making a decision that affects everyone else in your community.

That is why we had recent epidemics of mumps and measles in the UK and the US, leading to hundreds of sick people, and some who were disabled or killed. Because I work with students in various schools, I get lots of exposure to viruses. I had not previous had a mumps vaccine or the disease, so during those epidemics I went and got the MMR. Now I’m protected against Mumps, Measles and Rubella (even though I had the other vaccines in ‘63 and ‘70, the combined vax helps boost my immunity). I also went through the Hepatitis B series that year.

So yes, I’m a big proponent of vaccinations.

And no, I do not subscribe to the hysteria generated by a few noisy, well-meaning but seriously-deluded or paranoid people who believe that there is a world-wide conspiracy Read the rest of this entry »

3 Comments

Communication Blips

17 February 2008 at 5:50 (ADD/ADHD, Autism/Asperger's, Communication)

I’ve not been posting much lately, due to a combination of a head cold (you would think that would result in more sleep, but good sleep still eludes me), major changes in my job schedule, an evening class that I’m taking sucking up time with studying, new Saturday classes that I’m teaching sucking up time with preparations, and ongoing communication blips between my household wireless router and the AirPort card in my MacBook. I think the wireless problems annoy me most of all, because it’s being able to rely upon the little things that enable us to deal with the big things.

Having digital communication blips reminded me of the other sort that we sometimes deal with around here.

So. I have a teenager of the typically reticent sort, who at times is given to answering open-ended questions in monosyllables. That in itself is not particularly uncommon. What we do run into are situations where the Kid is still learning what needs to be actively communicated, rather than assuming that others will know what is wanted or planned. These are the little blips of “mindblindness” that we sometimes run into with the Asperger’s and/or AD/HD kids. (Adults have these problems at times too — the difference being that we have figured out the more common situations, but still miss moments here and there, leaving our spouses and co-workers puzzled or annoyed).

What are these communication blips? Read the rest of this entry »

4 Comments

Maslow Cleans House

16 February 2008 at 4:56 (ADD/ADHD, Autism/Asperger's, Coping strategies, Home stuff)

This How-To post is dedicated to a pal of mine who was commenting about how hard it is to get the apartment (flat) tidied and cleaned up. I was trying to describe how I used Maslow’s Hierarchy of Needs, natural supports, and the Premack Principle together as means for organising this most mundane set of chores.

In this case, we don’t mean that housekeeping is “hard” in the sense of physically mopping a floor, but hard in the sense of figuring out where to start, how to keep the momentum going, getting the job finished, and even figuring out what to do with stuff. The so-called “executive functions” of planning, execution, self-monitoring et cetera are not limited to office work — they are just as necessary in the realm of what used to be referred to (somewhat tongue-in-cheek) as “domestic engineering”.

Amazingly, tidying and cleaning a small apartment is more difficult than doing the same in a full-size house. Granted, the larger house has more rooms, which in turn means more square area to be vacuumed or mopped, and may mean twice as many toilets and tubs to scrub. But the problem with the tiny domicile is that the average 21st-century post-industrial resident has a certain amount of Stuff for daily living, and that amount of stuff does not shrink proportionately just because the domicile does. (I love the German word for “stuff”, Kram, because cramming my Kram into odd places is what I spend a lot of tidying time doing.) Worse, small residences usually lack great amounts of storage space. Unless you are spartan in your personal possessions by dint of poverty or strong design aesthetic*, you have more stuff than the meager cabinets and closets will hold.

Of course we have to pick up first to clear the surfaces so we can clean them. But we could spend all day trying in vain to get things picked up, especially if we have AD/HD and are easily distracted. Picking up is way too recursive — you pick up one thing to put away, take it to where it belongs, find something at the end point or en route to the end point, pick it up, maybe put away the first thing, try to put away the second thing, maybe manage to do so without being distracted by the third thing, or get interrupted by a phone call or a cooking timer or remember something else or…

Heavens, at that rate you would need to get your shoes re-soled before you got the place picked up! And in all that, you’re making a half-assed attempt at trying to clean things as well, because you got thirsty and found something moldy or spilled in the fridge and –

ARGH!

To make any headway in my own domestic engineering, I finally had to set up a hierarchy, somewhat similar to Maslow’s hierarchy of needs. The needs are dual, based upon the needs of the residents for living there, and also upon the housekeeper for being able to get things done effectively. My own order of operations is set up as much as possible for natural supports to be created. Read the rest of this entry »

8 Comments

Fishing With the Wrong bAIT

9 February 2008 at 23:43 (ADD/ADHD, Auditory Processing Disorder, Autism/Asperger's, Tinnitus, hyperacussis)

The other day (er, week) I promised to post some thoughts on AIT, so here they are.

There are plenty of treatments offered to cure or improve Auditory Processing Disorder (APD). Auditory processing is not just about hearing. Hearing is the sensory business that the ears do, and the auditory processing is what the brain then does with the signals from the auditory nerves. The ears also have the semicircular canals, which provide us with information about balance — that sense of balance, along with the proprioception of our joints, ligaments, muscles, tendons and bones, give us the sensory information we need for coördination. In auditory processing disorder, the sensory part of hearing often works just fine; it is not a hearing problem, it is an understanding problem. The ears are getting the information and are sending suitable signals; but there are some “tangles” or “speed-bumps” in the interpretation of the signal.

One treatment popularly lauded on Web advertisements is Auditory Integration Training (AIT), which is supposed to also help problems related to tinnitus, hyperacussis (oversensitivity to high-pitched and/or sudden noises, or sound in general), autism, ADD or ADHD. Depending upon the practitioner, AIT may also be sold as effective treatment for dyslexia, stuttering, depression, speech delay, and even head-banging or echolalia. That’s quite a list of highly diverse issues, which immediately sends off mental warning bells.

AIT was developed by Dr Guy Berard, who is also the author of the (out-of-print) book, Hearing Equals Behavior,

“Everything happens as if human behavior were largely conditioned by the manner in which one hears.”

(Hmn, I bet a lot of Deaf people would beg to differ with Dr Berard’s assertion!)

So how is this method supposed to work? Read the rest of this entry »

6 Comments

For children now gone

18 January 2008 at 6:19 (Autism/Asperger's, Pain, abuse, advocacy)

For the past three days I have been trying to think of something to say about the tragedies. I cannot really find the words to describe the incredible wrongness of such pointless losses. Even worse, there is the lack of reportage about such news (in Brent’s case), or the reportage of support for the murderer (in Katie’s case). I wish I could say that such events were unheard of, but horribly, they are not freak singularities, simply unheard-of by being under-reported. Children with disabilities are murdered more often than anyone wants to realise.

The first story is of a young man, Brent Martin. He was beaten to death by a gang three guys who punched him in the head 18 times, just for a £5 bet. Brent was targeted because he had an intellectual disability. He never even fought back. Dave Hingsburger has initiated a black armband campaign in his memory.

The other story is of a little girl, Katie. Her mother Karen McCarron suffocated her with a plastic garbage bag because she couldn’t stand the fact that her three-year old daughter was autistic. The rest of Katie’s family misses her terribly.

Katie’s favorite color was pink, so here are some Pinks flowers. The black-banded tiger swallowtail butterfly is for Brent.

Go give your children hugs and tell them how much you love them.

11 Comments

Mystery Jam and Other Achievements

8 January 2008 at 3:10 (ADD/ADHD, Auditory Processing Disorder, Autism/Asperger's, Dyscalculia, Dyslexia, IEPs, Learning Disabilities, Special Education, epidemiology)

I lost a label. I don’t mean the sticky label missing from the jar of “mystery jam” in my pantry (the goo is yellow, so I’m pretty sure it’s last summer’s ginger-pear jam), but rather a diagnostic label. For many parents, one of the highlights or milestones in life is for their child to “lose the label”.

Once-upon-a-time the getting that label (or labels) was highly important, so everyone knew what the problem was (well, sorta) and so the child could get some kind of educational or therapeutic services. Getting the label was oft times a relief because it meant that Someone Official had recognised that the child’s problems were not due to bad parenting, moral failure, or general laziness on the child’s part. Usually parents suspected something was “off” for quite a while, so having that validated is a bit of a relief.

Of course, then once the suspicions are confirmed, there are often new kinds of feelings while adjusting to the new daily reality. Frequently there are skirmishes with school districts or other bureaucracies. Sometimes there’s a bit of a grieving process for not having the perfect little darlings imagined during pregnancy. Some families have issues with relatives not understanding, accepting or even “believing in” whatever problem with the child is dealing with. Nasty episodes can erupt in extended families if one of the parents is accused of “causing” the problem or bringing “bad blood” to the lineage.

And of course, a number of parents eventually realise that the child’s issues are echoes of some of their own issues. Going through these things is very complex, sometimes stressful, and often enlightening. Having a child with a disability does not automatically tear a family apart or make the siblings resentful; depending upon how the parents respond to the issues and to each other, it can strengthen the family members’ ties to each other, and lead people to be more compassionate and less judgmental.

So losing the label can mean that the family has (finally!) managed to get beyond a lot of those stresses. Or so it seems.

But what does it really mean to “lose the label”? It can mean a number of things. Read the rest of this entry »

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