WE MUST CREATE CHANGE

I was going to call this my “Hope For 2015”, but that is so passive and useless. Anybody can – and lots of people do – post warm, fuzzy notes with Hopes for the New Year, and others click and share. Lovely.

But this is NOT all warm & fuzzy. It’s literally dead serious (with many murdered throughout the year), and quite often blunt, because I am blunt at times. It’s also a call to a change of perspective for some of you.

Deal. Think about it. I’m not a lone voice. Click and share.

MY CALL TO ACTION IS FOR YOU TO READ THIS THROUGH, THINK, AND SPEAK UP. ALL YEAR LONG.

And the next year and the next.

This isn’t about some stranger, or Those Other People, or “That Kind”.

Children with disabilities or other differences are not diseased or broken. The same is true for adults. Yes, those “poor, little disabled children” grow up into disabled adults. Gee, so where’s the concern now? It sure isn’t at work; in the U.S. general unemployment is at 5.3%, but for disabled adults it’s twice that at 10.8%.

Nor are autistic or ADHD children some kind of modern mystery; millions of such adults have been around for decades, just unrecognized for lack of diagnostics. Most of us are profoundly relieved to find out Why. We still have to deal with the details, but that’s easier when you know that not all your difficulties are from some kind of moral failing, or from a lack of trying (and trying, and trying).

WHAT, YOU NEVER HAD KIDS LIKE “THAT KIND” IN YOUR CLASSES? YOU KNOW WHY?

Some were kept at home, because until passage of the IDEA in 1975, US law did not require public schools to teach everyone.

Some were warehoused in institutions, badly treated, undiagnosed or misdiagnosed, and oft uneducated.

But many of us were there; how we struggled through school and life, without accommodations or understanding, and often the target of bullying by peers and even school officials.

Untold numbers of women and men just knew themselves inexplicably “a bit odd”, and did best they could; some succeeding, others not so well.

At worst are those who not only lacked resources, but were shunned by society’s classism, ableism, racism and sexism, and (if still alive) are found among the imprisoned, derelicts, addicts, abused and enslaved populations.

YOUR CHILDREN AND EVEN COLLEGE STUDENTS WILL LEARN DIFFERENTLY, SO YOU MUST ADJUST

We are neither inherently stupid nor incapable of learning. Learning differently means teaching differently. Find what works. Everyone has limits, but a consistent lack of success means you should use another method, as well as more time. Sometimes the learning is highly irregular in pace. Tie learning to interests to motivate your children and students.

Also, be aware that sometimes the “simple basics” may be entirely bypassed by some students who leap to master higher concepts, albeit often forever struggling with those seemingly “simple basics”. People are humans, not robots. Learning is not always linear.

COMMUNICATION IS NOT JUST SPEAKING

Never assume that just because someone is nonverbal they cannot communicate. If you’re not getting their messages, then *you* are doing something wrong. Nor should you assume that because someone is nonverbal that they cannot understand what people say (though the processing may sometimes be delayed). Nor assume that because someone has been nonverbal for years that they’ll never speak. And damn, will you get an earful.

INCONSISTENCY IN DAY-TO-DAY ABILITIES IS FRUSTRATING FOR ALL, AND NOT A CHOICE

Importantly, just because someone is able to speak or do a task one day, that does not guarantee consistent results. It’s the nature of disabilities — regardless whether considered mental or physical – all involve the brain. Brains are funny things, and many of us have a few buggy Beta-version programs in our wetware. It’s frustrating as hell for all involved.

But don’t assume the “could-then-can’t-now” is intentional. “Oh, he can hear me when he wants.” “Well, you could solve those equations just fine yesterday.” I can guarantee that after a lifetime of such, ridiculing people and punishing them for things they cannot help only increases performance stress.

While that stress might increase focus from sheer terror, it often squelches overall functioning. (Do you want me to listen to you, or try to recall yesterday’s process, or slowly figure it out on my own? I can only do one — if my stomach will stay down.)

TRAMPLE THE TROPES

Ignore the media tropes and centuries of religious hype: disabled people are neither inherently amoral, soulless and evil, nor are they infinitely happy, friendly and angelic. People are people. A few will be nasty bits, some will be profoundly good sorts, and the rest are just ordinary folks who get mad, sad and glad, who screw things up sometimes, and who will also serve others selflessly despite bearing more abuse than anyone should.

We are definitely not incomprehensible, incomplete, little autism-puzzle-pieces, unloving, unlovable, or uncaring.

We are whole people with all the same cares, needs and wants as all humans. Beware — disability happens to anyone at any time. We aren’t a Them, and YOU can be among the world’s 15% in just one day. We are all Us.

STOP “TEACHING TOLERANCE”

Because tolerance means putting up with something one doesn’t really like, or that doesn’t really belong. We want full-fledged ACCEPTANCE.

Nor should we only be acceptable if we can somehow “overcome” our differences enough to pass for Normal Real People. Trying to “pass” all the time is exhausting, and invariably breaks down, oft resulting in the [supposed] Normal Real People assuming that one is lazy, stupid, crazy, all the above, or worse.

Training children for hours a day how to artificially perform “acting normal” does not serve to help them learn how to function best in the world. Yes, of course teach good manners, social and work skills. But suppressing every twitch of one’s natural being adds to stress, making everything else yet more difficult. This is especially when performing like a “normal person” means not doing the harmless things that reduce stresses.

STOP THE BLAME

I must call out the terrifying, unaddressed assumption which underlies so much daily trauma: “The reason the disabled [children] are targeted by bullies is because they are perceived as being weird”. Despite the pervasiveness of this social theme in society, most people are functionally unaware of it, all the while instilling in their Normal People children the same message. Normal People children need to act normal, and not act like That Kind. After all, that’s how the Normal People know the others are That Kind, who’s Us and who’s Them.

But it’s the disabled and different who are taught, over-and-over-and-over that not only is it their fault for behaving or looking weird, BUT ALSO if they weren’t so weird, well then they wouldn’t be bullied. “Quit being so weird! Just say No! Just say Stop.”

Just say BULLSHIT. Because this is blaming the victim. The problem is not that everyone isn’t the same, the problem is that there are bullies.

Even worse, blaming the targets actually empowers the bullies, because the social story says it’s the victim is the one who is acting wrong, so it’s not really the bully who is to blame.

Let’s just top off all that existing anxiety and depression with the trauma of trying to seek justice, but being told again that, “Well it’s your fault, you know. Attracting attention by being weird, and bugging people. You need to quit making trouble now. You already take up too much of our time with all of your “special” needs. Quit whining and go deal with it. — But no fighting, because we’ll know it was you who started it.”

By the way, it’s not “just a kids at school” thing that everyone will “grown out of”. It continues on through college, and happens at work, too.

YOU CAN’T WALK IN THE LITTLE BOY’S SHOES;

THEY’RE FLOATING DOWN-RIVER

It is NEVER acceptable to murder disabled children. Nor should these repeated, horrifying events be considered “understandable” or “excusable”, with the murderers being pardoned just because their son or daughter had a disability.

Increasingly more prevalent in social media, the crime becomes insidiously deemed more and more acceptable. Murderers re-cast themselves as martyrs, acquiring champions to their cause. Throughout repeated blog posts and news stories, they bemoan how taking care of disabled children is just too unbearable, they had to take care of them every day of the week, there was never any relief or help. (Even though there was.) Cue the groupies’ hand-wringing and protests upon the villains’ behalf: “Oh but won’t you walk in their shoes, how they’ve given up their lives, this wasn’t at all what they wanted.”

For in true sociopathic fashion, the poor, long-suffering parents revel in the attention, announcing to the world – sometimes ahead of time — what they have done, and all the while describing themselves as the victims. The dead children (young or adult) are unwanted, and deemed unwantable, less than human just because they couldn’t speak, or needed medical treatments, or used a power chair, or didn’t play with their toys the “right way”, or wore adult diapers … No one would want to live like that; the thing’s better off dead. And what of the groupies? Well, where do you think people get such terrible ideas that it’s okay to kill one’s own children?

ENOUGH WITH THE “DISABILITY INSPIRATION PORN”.

Quit using those heart-tugging videos, walk-a-thons, telethons, and other grand-society functions to win your supposed Cosmic Brownie Points for giving us your pity. Please stop dumping upon us the largesse of your unwanted rags (so Victorian, so passé), or creating useless functions requiring us to serve as targets of unwanted helpful-helper-helpiness for your ego-boo.

Get disabled people out of “sheltered workshops”. Yes, people need work they are suited to. But the segregation and token sweatshop “wages” are an embarrassment and humiliation to all.

YES, CHILDREN GROW UP.

YEP, STILL DISABLED, BUT NOW ADULTS

Do not assume your children will remain permanently childish and incapable — they mature on their own timelines. Allow adults to be adults. Support their needs and interests, but neither dress them like children, nor expect them to live their lives in naïve pre-puberty stasis, without adult desires for socializing with adult peers, life-long learning, mastering skills for some kind of job (even if that job is “just socially productive work” rather than traditional work), and yes, having a love life, however that may be expressed.

YES, PEOPLE ALSO NEED ACCOMMODATIONS;

THAT DOESN’T MEAN “CURE”

Most disabled or different people are not looking for cures to magically change them into someone else, some kind of fantasy Normal Real person that their families wanted instead. Our differences may result from physical events, by random mutation, and / or genetics. Your genetics. We are family. I’m Me, and I like being Me. If you somehow changed all the differences in my brain, I wouldn’t be Me anymore, with all my quirks and abilities.

Of course it will be great to find a means for preventing migraines, epilepsy, fatal medical conditions, et cetera. But it’s also a sad fact that some people have been so convinced of their undesirability as disabled human beings that they can only see “cure” as a means to being an acceptable Normal Real Person. (Worst of all, some people commit suicide because they’ve been taught to hate themselves, as useless and unwanted.)

But what’s really alarming is all the fund-raising, talk, research, and work going on today to eliminate entire kinds of peoples. I’m talking about the thousands of selfish individuals and sociopaths who believe that anyone with neurological or morphological differences should not exist at all, because That Kind takes up too much time, money, and resources.

That’s not “looking for a cure” – that’s eugenics and euthanasia, the same ideas that led to the Nazi Aktion T4 program and other horrors. (In my youth, the state hospital was still in the regular habit of sterilizing people. Had I been institutionalized, I might well not have had my lovely children and grandchildren.)

Yes, we want assistance, we want things that help us achieve what we want in life. Getting the things one needs to learn effectively, to move about, attend to their own needs, to work, to play, to be a part of the community, to have lovers or families. These things should not be seen as extraordinary, special, absurd, or a waste of money, just because they aren’t the same kinds of things used by other people. 15% of the people in the world have disabilities. That is a lot of humanity, and many are uneducated, abused, neglected, avoided, or shut away, depriving the world of incredible amounts of untapped abilities and talents.

CALL OUT BULLSHIT. REQUIRE ACCOMMODATIONS. DEMAND ACCEPTANCE.

MAKE IT SO.

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Fruit flies like a banana

“Time flies like an arrow; fruit flies like a banana.”

Some of my special interests are insects, science and special education. The three subjects rarely intersect, but you can bet that when they do, it’s going to be interesting! Populist politics is once again — or rather — still degenerating into vast bogs of anti-intellectualism.  As noted across many news-editorial and science blogs, Republican Vice-Presidential candidate Sarah Palin positively excels at scorning science.  It shows up not only in her stump speeches, but also in her belief in young-earth creationism and stance on teaching Intelligent Design in classrooms. One of the latest foofaraws is her denunciation of funding for research on fruit flies.

“You’ve heard about some of these pet projects, they really don’t make a whole lot of sense and sometimes these dollars go to projects that have little or nothing to do with the public good,” Palin said. “Things like fruit fly research in Paris, France. I kid you not.” [YouTube link]

What does Palin have against this line of science?  Well, that’s a bit puzzling, especially when we look at the subject of her first policy speech.  The VP candidate was talking about special education services and the Individuals with Disabilities Education Act (IDEA).  But all the pro-funding talk was a bit of a turn-around for the Alaskan governor, who had previously cut the funding for Special Olympics in half.

What really stood out is that within her speechifying, the intent of her points about science funding collided with the actual content of part of what she was saying. Palin was (among other things) advocating for Read the rest of this entry »

The sum of good intentions

Feel free to insert the more familiar or acceptable word of your choice.  But regardless of your word choice, the equation stands:

Good Intentions plus Bullshit still equals Bullshit

It doesn’t matter if you are a parent earnestly trying to help your child improve lagging developmental skills — if the information you are disseminating to newbies or news agencies is based upon bogus treatments and world-wide conspiracy theories, then the information you are giving others is still bullshit. (Example: vaccines cause autism and/or dozens of unproven “cures” for all sorts of developmental/educational difficulties.)

It doesn’t matter if you are an elected official trying to get funding for projects that could potentially improve the local economy — if your cherry-picked “experts” assert that there are no ecological problems, but the overwhelming majority of experts from agencies around the world say there will be serious consequences, then your assertions are still bullshit.  (Example: Sarah Palin on global warming, oil pipelines, and polar bears.)

It doesn’t matter if you are a news reporter trying to ensure “balanced coverage” of a story by quoting from “both sides” — when one of those “sides” lacks credibility and just presents distraught protagonists ranting over perceived injustices because fact-based reality keeps intruding upon belief systems based upon magical thinking and millenia-old folk tales, then your editorial judgment is weak and the news is full of bullshit.  Respecting others’ feelings and beliefs does not mean that those should usurp sound legislative, educational or economic practices, or be allowed to trump everyone’s civil rights.  (Example, Creationism/Intelligent Design being taught in science classes.)

Nope; the earnestness and good intentions part cannot gloss over the huge piles of bullshit.  Crap is still crap, and the best thing we can do with crap is to put it with the rest of the dead stuff and compost it, until the bacteria and worms and arthropods have broken it down into something useful.

When “Humor” is Not A Laughing Matter

When we watch old movies or programs, read old books, listen to old audio recordings, it quickly become apparent that tastes in humor change, mostly due to evolving senses of what is appropriate for being laughed at. There are racist and sexist and disableist jokes that are only painful to hear, because it is embarrassing to realize that some people find/found their humor in the ridicule of demeaning others. When the “Jokes you cannot tell in mixed company” have turned into “Jokes you wouldn’t even want to tell in any kind of company”, you get some hope that maybe society is growing up … just a little bit.

Or, not.

An upcoming movie is such an example of humor that fails its efforts to parody. Much of comedy has to be “cutting edge” to have the surprise value.  It pushes at the borders of acceptable behavior, and relies on our ability to laugh as a means of dealing with stress.  Treading the edges of propriety can be rich source, but can also backfire if the comedian does not have a good sense of the audience and of the purpose of their material.

Satire is a particular type of humor; by definition it is designed to “make fun of something” — but to a purpose.  It illuminates personal and social problems that we had not really thought about or could not easily discuss, and cleverly uses humor to deflect some of the tension that would have otherwise occurred.  Its tools are heavy irony and sarcasm, puns and wordplay, and parodies and comparisons.  Properly used satire is wit that seeks to improve society, rather than simply demeaning people. But satire can be misinterpreted.  Sometimes the result is more serious than mock-serious, and the audience does not understand that the performer is not really advocating, or believing in what they are presenting.

Comedy can also be misused when poorly-done attempts at humor are sometimes passed off as “satire”. There is a big difference between laughing with someone, and laughing at someone. Attacking someone and then saying, “Oh, it’s just a joke; whatsamatter, can’t you take a joke?” is not true humor. This is “humor” derived from a feeling of superiority, using shame and derision. As I said, satire is wit that seeks to improve society, rather than simply demeaning people.  Parody can be a part of satire, but just parody is not necessarily satire.  Parody can easily slide into snide efforts that not only lack sacred cows, but also lack sensibility and purpose.  Just because you can say something doesn’t mean you should.

And that’s where we seem to be with major parts of this Tropic Thunder movie, that seeks to make fun of many foibles of the movie industry and the whole genre of war movies.  Granted, those are certainly rich sources for parody.

But the line gets crossed when Read the rest of this entry »

Not Flapping My Lips

(“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. Read the rest of this entry »

The Crystal Ball Crack’d

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 »

Not so lucky

The other day at the college I was waiting for an elevator (lift). It’s rather slow, but a sleet storm was heading in and I was especially achy. Just a few feet away was a bulletin board for a program the college runs, including a series of non-credit weekend classes for people with Down’s and other developmental or cognitive disabilities. One of the things thumbtacked to the board was a yellowing newspaper clipping. The photograph showed a young man busy in his kitchen, with his father standing nearby, watching him. The article began by mentioning how lucky the young man is because he has resources to help him learn to live independently, to get his own apartment, to get a job to support himself, and other important things.

He is lucky.

“Lucky” is one of those stock newspaper words that seems to be required in stories about disabled people. It’s right up there with “amazing”, “inspiring”, “challenged”, “journey” and a dozen other terms that I’m blanking on just from sheer nausea factor. (I’m sure you can think of several others.) I finished reading the story by the time the elevator moseyed up to the top floor. By the time I descended three levels, I had gathered up a fair bit of annoyance. Read the rest of this entry »

Epidemiology Bass-Ackwards

Again.

A short news item caught my attention today. Unfortunately, it looks like a fabulous example of bad science, with lousy sampling methods, correllation trying to equal causality, and a heavy dose of confirmation bias. Add in a big dose of well-connected media personalities, and it’s absolute chum-bucket for indiscriminate news sharks.

Dr Lawrence Rosen thinks there is probably some kind of “environmental problem” causing an “autism cluster around St. Anthony’s school in Northvale”, New Jersey. Why is that? “The initial study included interviews with 24 current or former school employees who had children after working at the school. Their 42 offspring included 24 with developmental disorders — and 10 of them have autism.”

Oh, and “The school serves children with autism and other learning disabilities.” Are we not surprised. ( /dry humor )

Saying that something around the school “causes” large numbers of autistics (et cetera) is like saying that swimming pools “cause” large numbers of bikinis. Read the rest of this entry »

M, F, N/A

Wow. Here I was ready to comment on one piece of news, when several more caught my attention. They all revolve around social ideas of gender rôles, and marginalised or disabled people.

This first one struck close to home: Khadijah Farmer was kicked out of women’s toilet of a Manhattan, NY, restaurant because the bouncer thought she looked too masculine.

“I said, ‘I am a woman and I am where I am supposed to be,'” said Farmer, speaking at a a news conference. “I offered to show him some identification. I was told that’s neither here nor there.”

Some people might say that happened “just because” she’s a lesbian (like that’s a valid reason), but I can vouch for the same thing happening to me as well. On the occasion that I wear a skirt or dress, I look “appropriately” female. But since I have a really short hair style, and often wear men’s shoes (because I have wide feet) and men’s shirts (because I have broad shoulders and long arms) and am disinclined toward wearing make-up, I have been frequently mistaken for a guy.

Even my name doesn’t seem to help; just last week Read the rest of this entry »

“For no reason”

(Coffee-spew warning)

“I don’t know; he just started biting the other kid for no reason. But you know, children-with-autism just do those things.”

“We were just going over the lesson when alla-sudden she just BLEW UP for no reason, and started cussing and calling me an F-ing B and threw her folder papers all over and stormed out of the room!”

“I don’t know what’s wrong with this kid. He’ll just pitch an absolute FIT. We tried to restrain him but then he starting kicking the para and screaming and banging his head on the floor. Honestly, he does. It’s awful, believe me. He’s just uncontrollable — if you want, we can set him off and you’ll see what I mean!”

These are re-created quotes, not verbatim from documentation. But I’m sure you get the idea. (The behavior specialist was naturally horrified Read the rest of this entry »

Learning Nothing

“I don’t know what to do with my son. You don’t understand what it’s like. He CAN’T LEARN. He’s been in school for FIVE YEARS and has learned NOTHING! I’ve been to all these meetings. It took him MONTHS of therapy to teach him how to sit down! He’ll NEVER be able to talk. He’s severe.”

This is a made-up letter. It’s a highly shortened version of letters I’ve seen a number of parents post on various discussion boards. It’s alarming on several fronts: the parent is stressed beyond their limits, and is of the belief that their son has not learned anything and cannot learn anything, and not surprisingly, has all but given up on the school he’s been attending, and also that because the child cannot [reliably] speak at this age that they will never speak or never be able to communicate by other means. The parent is certain that the child is DOOMED and will never mature into a capable, happy adult. (The grammatical and attributive errors of “he’s severe” also make my brain hurt, but that’s another issue.)

Judging by the complaints of parents who blog about their frustrations with schools or with their children, there is no lack of bad pedagogical examples.

You try something. It doesn’t work. You tweak it, and persist at employing Instructional Method X for a semester. For an entire year. New IEP, with a few tweaks, new room, different teacher. Still pretty much a variation upon Method X for another semester and another year, because X is the method that the teachers learned when they went to teaching college, and the tweaks were what the SpEd specialist learned from when they went to teaching college, picked up at a seminar, and heard from another SpEd specialist that worked on another kid who was also diagnosed with “A”. By all accounts, it should work.

Let’s work on that some more. Read the rest of this entry »

Rainbow Cracking

The other week after my blogging about dyspraxia and such, hubby found an article in wired blogs (“Hacking My Child’s Brain”) and a recent article in the New York Times, “The Disorder Is Sensory; the Diagnosis, Elusive”. Although sensory integration remains a vaguely-defined albeit real disorder, treatments are highly varied and disputed. Some treatment approaches lack rigorous testing for efficacy, creating difficulties for insurance coverage.

One approach mentioned in the former article is from the Sensory Learning Center in Boulder, Colorado (US), and is described as suitable for a long list of issues: autism, Asperger’s Syndrome, acquired brain injury, developmental delays, birth trauma, behaviour problems, ADHD, and for “learning enhancement”. Their Web site is rife with testimonials from clients and practitioners.

Well, testimonials don’t sway me, Read the rest of this entry »

Devils and Angels

Reading the morning news is dreadful for the happy digestion of my breakfast. Everywhere I look there are devils and angels, pantheons and freak shows, all in the name of disability.

It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights.

Being disabled is seen as a condition so horrid that no one could imagine living a happy, (otherwise) healthy, productive life. Not despite the disability, and not especially with the disability or even because of the disability. Being disabled is a fate worse than death. It turns a person into a “toxic train wreck” or it’s “worse than cancer” (because a person with autism, unlike a person with cancer, has a normal lifespan). So horribly unimaginable is being disabled that euthanasia is often deemed acceptable and even an appropriate “solution” to disability.

It has been not very long since people with various disabilities (and other differences) were routinely institutionalized (unfit for being in human society), and often sterilized. A person could be subjected to forcible surgery for such eugenic reasons as being blind, deaf, epileptic, poor, of a native (aboriginal) race, of mixed races, alcoholic, having a physical deformity, cognitive disability or perceived mental illness. Had I been institutionalized as a teenager, my children might not exist.

Being disabled is also seen as a condition where a family is divinely blessed to have been given such a special child who is looked after by angels. I’m not slamming those parents who feel that their children are blessings, but rather saying that all children are such – having a disabled child in the family does not earn a person extra cosmic “brownie points”.

The angelic disabled person is not-quite-human, a tragic but romanticized virgin on a pedestal of virtue. Certainly not an everyday sexual adult; a female person should never do anything as inconvenient as menstruate. Like 19th-century women, the disabled are sometimes cast as cherubic, above the base animal instincts of men, and held in divine favor. In medieval times, the town’s fools were excepted from normal citizenship, either as unclean or sometimes soothsayers, if given to (epileptic or other) fits.

In current news there is the case of the “Ashley Treatment” where a young disabled girl’s parents have elected to have her undergo several surgical treatments plus œstrogen therapy to keep their “pillow angel” a small, manageable size and to remove her breast buds and uterus to prevent her natural sexual development. Removing breast-buds to prevent cancer is a specious argument. I don’t know if the history of cancer is from the maternal and/or paternal side(s) of the family, but it’s pretty telling that we don’t hear of mom and/or dad also having mastectomies to prevent cancer. After all, cancer is more commonly found in older people. Likewise it’s another specious argument that making her infertile will prevent the potential for sexual abuse from caregivers – children are just as easily targets of molestation (it simply makes any abuse more difficult to discover because she won’t unexpectedly come up pregnant). Were she male, would the child have similar surgeries?

At that rate, one could simply hobble a child so they never ran away. Or one could mute a child so they wouldn’t scream loudly when upset. Or one could remove all of a child’s teeth so they couldn’t bite anyone when scared – oh wait, people have already done that …

I have to sympathiese with her parents; caring for someone on a daily basis is difficult. But trying to prevent sexual abuse or care difficulties by surgically removing body parts is working at the wrong end of a major social problem. It’s completely backwards! The problem is not that disabled people exist, but rather that there are not suitable social support networks for disabled people and their family members.

Many handicaps are socially created — it’s not the person who has the problem, it’s the way society is set up.

No longer is the disabled person a sick lurid spectacle to be hidden away. They are once again on parade, the freak show turned into infobites. An insidious side effect of freakifying the disabled as devils and angels is that it not only creates the disabled as Other, but it also does a great disservice to those who view themselves as nondisabled: it makes a person glad to be normal, and content to be average. It perpetuates the divisions and reinforces the dualities. With such positions, we can never create inclusivity.

What could be worse than being cast as devil or angel? Being totally discounted as a non-person. Being neglected and dying a slow, painful death like Sarah Crider or Tiffany Pinckney.

The human race has a lot to answer for.

Rush Hour Traffic

No one likes rush hour traffic. But the reason it exists is because thousands of people feel that they have to take the same road at the same time. Then they get upset because they can’t all do it fast.

Rush hour traffic is highly over-rated. So are developmental time-tables.

One of the important points is that a lot of the “developmental disorder” end of things is developmental slowness or unevenness – it takes longer to get certain skills, and they may not necessarily be reached in the same manner as most. Comparing a child with such to the standard developmental timetables may only serve to increase stress at the seeming brokenness.

So many schools are trying to fast-foward children, expecting kindergarten social, cognitive and physical skills from preschoolers, and gradeschool social, cognitive and physical skills from kindergarteners.

Children between the ages of 2 and 6 are integrating a humongous amount of information in a variety of spheres, including receptive and expressive language, physical skills ranging from gross and fine motor to bodily functions, single-interpersonal skills, group interpersonal skills, acquiring subject knowledge in concrete things in their lives, cause-and-effect stuff, abstract stuff like numbers and reading and time (seasons, special events etc), and a bunch of other stuff that’s not even coming to mind right now.

Then we throw in things like developmental variability in sensory realms and proprioception and language processing and …

I couldn’t tie my shoes until I was in 3rd grade. Bike riding was even later. I didn’t know all of my multiplication tables until 8th grade. I required speech therapy in primary school, and that was back in the 60’s when most kids didn’t get anything.

Sometimes I think that too many people turn all these developmental timetables into bare minimums, when in fact they are simply averages, which means that some kids do things sooner, and some kids do things later. Given how uneven our kids are, they think that everything should be as advanced as our kids’ best skills. They also spend too much time evaluating how well children participate in herds, when in fact most toddlers and preschoolers really aren’t so much herd animals yet.

School is not about racing to the finish. Nor is it about everyone taking the same path to get there. Despite what people say.

But people get Terribly Concerned because their children are not learning things at the proscribed rates. They become afraid that their children won’t learn at all, that somehow they will be “stuck” at whatever stage they are in. So there are children who spend 40 hours a week in a variety of programs for speech, for movement, for scholastic tutoring, for mimicking social interaction …

Once upon a time, long ago in a galaxy far, far away … we didn’t have all these “programs” for things. Which is not to say that some kinds of programs might not have been helpful. It would have made 40+ years easier if people had known about my considerable Auditory Processing Disorder difficulties, instead of saying I “wasn’t paying attention” or was lazy or whatever.

But people get Terribly Concerned that their child “doesn’t know how to play”. This boggles the mind – how can a child “not know how to play”? But what people are really meaning is that their child is not playing the way they expect them to, i.e., not the “right way”. It’s pretty sad when children are graded on whether or not they play correctly. Play is a personal exploration of the world, for one’s own learning and delight.

One of the things commonly ascribed to autism is a “lack of imagination”, because autistic children don’t always play with the same toys that neurotypical children do, or don’t engage in make-believe games the same way that neurotypical children do. This is really ironic, because Hans Asperger himself said, “It seems that for success in science and art, a dash of autism is essential.” Hmn … And indeed, you’ll find autistic people in most every sphere of endeavour.

If the child doesn’t show an interest in typical toys, then they are simply not interested in them. Let them be available — they may later, or they may end up using them in different ways than other children. (Toy cars are for lining up, right? <grin>) It may be also that other things not generally considered to be toys will be more interesting to them.

For example most kids of all sorts find a manual eggbeater to be fascinating. But an eggbeater is not considered to be a “toy”. Nor is graph paper or a weight scale or a Latin dictionary or an Army Corps of Engineers building manual for national parks structures, although I found all of these fascinating as a child. I still do, and they gave me background useful for my degree in horticulture — you never know how those particular fascinations can be useful.

You may not see the same style of role-playing activities as more socially-oriented children engage in. Those are called “imaginative” play, and many people assume that a lack of engaging in them is a lack of imagination. Rather, it’s a lack of role-playing, and imagination can take many other forms. I played with dollhouses — but spent hours arranging the furniture, not acting out stories with the dolls themselves. To this day I can remember what the furniture looked like, but not the dolls that were supposed to go with it. I have a superlative mental “CAD” type program in my head for arranging and manipulating elements in space, and if I tell my husband that the sofa is six inches longer than the wall, by gum it is six inches longer than the wall. I can re-arrange stuff and pack more into a dishwasher or suitcase or packing box than anyone else.

Let your children have time to explore their worlds by giving them a wide range of experiences, and letting him take those in, in their own manner. Give them what they need by way of therapies to help him deal with things that make their lives difficult, but please, don’t fill their days with them. Children do develop, and some of them do so on different time tables.

Trials and Tribulations

People whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality. Excuse me; that should be the alleged murderers; trials haven’t happened yet for several of these cases.

Holy shit! Parenting is hard. Period. Yeah, there are bad days. Some days you feel like you’ll never get to eat your food at the proper temperature, or go potty or take a shower uninterrupted, or sleep through the night. Some days you feel like you’ll never finish the endless assessments, or learning more about the alphabet soup of ADHD, APD, ASD, TS, DSM, IEP, or attending special school meetings. Some days you feel like you’ll never get through the little chats with the police officer on your doorstep, or the hormonal teenager angst, or the getting homework done and turned in so the grades reflect a little of the smarts behind the scholastic ennui.

Amazingly, this is true regardless of what sorts of kids you end up with.

It’s true that there are some problems with autistic children that one doesn’t have as often with neurotypical children. There are also problems with NT children that one doesn’t often have with ASD children (when was the last time you read a blog by a parent sighing over how their autistic kid wanted to invite two dozen kids for a birthday party at Chuckie Cheez followed by a sleepover?) Different is not worse.

Aspie kid was a “runner” as a toddler. With my faceblindness I have great difficulty finding people in crowds; tracking down a small child that has bolted into the mobs of people at a mall would have been dangerously slow. Thankfully my other kid was four years older and could help me. I ended up having the tot in one of those child-harness & leash setups when we went shopping. People would give me dirty looks because I was a “horrid mommy who put their kid on a leash”. Frankly, I was a concerned mommy who wanted to keep her kid safe, because this child was fast, strong and inclined to dash off when intrigued by something.

There were also meltdowns, which being unaware of autism at the time, were to me simply “being too tired” and/or “having a tantrum”. So I ended up figuring out what the triggers usually were, and finding ways of circumventing those. We also learned how to calm down, and how to recognise when things were starting to get to be Too Much. I also learned the fine art of calmly saying, “Having a temper tantrum is not going to make me change my mind. When you calm down, then we will shop some more.” (I used a lot of If-Then and When-Then constructs when dealing with my toddlers; they could understand the binary constructs, and it helped them make sense of cause and effect.) Of course, passers-by would want to intervene and try to comfort/appease the child or chastise me for having a crying, floor-kicking kid on the grocery aisle floor. I also acquired the other fine art of smiling, nodding, and reassuring them, “It’ll be okay in a minute or two.”

This child also had/has distinct clothing and food preferences. Some relatives called this “picky”. I thought of it as merely having … preferences. I like my clothes or my food a certain way; why wouldn’t anyone else?

Sure everything was all about orcas when younger. Sure made gift-giving easy. Now it’s videogames (shocking, I know). Sure makes gift-giving easy. (Unlike dad, who has neither perseverations nor any particular hobbies; is that just so weird, or what?!)

Different is not worse. It’s just different. Rearing children is going to do major things to your daily life structure, your bank account, your living room furniture, your social life, and so on. That’s real life. Whining because your life isn’t going the way you thought it was going to, or like some kind of posed ideal family scenario from a greeting card, is simply whining.

Meanwhile, learn how to have fun with your children. Figure out how they learn, as unique individuals. Experience how they share their thoughts and feelings, as unique individuals. Take photographs, collect stories about funny family moments, and build up that group identity of “this is the sort of stuff that makes our family because we’re all part of it”.

DON’T EVER wait until “things get back to normal” or “when this is all over” to do anything. There is no “normal”. This is it. This is life. Fun is something you make, not something that happens to you. Families is who you are, not something you wish would be. Love each other, live it, enjoy it.

(And bake cookies, because cold milk and warm cookies with your fingerprints pressed into the tops are great family-glue.)

Going Through the Motions

“I’ve been making a list of the things they don’t teach you at school. They don’t teach you how to love somebody. They don’t teach you how to be famous. They don’t teach you how to be rich or how to be poor. They don’t teach you how to walk away from someone you don’t love any longer. They don’t teach you how to know what’s going on in someone else’s mind. They don’t teach you what to say to someone who’s dying. They don’t teach you anything worth knowing.”
~ Neil Gaiman

“Pay attention!” my mom would command, “Look at me when I’m talking to you!”

And then I’d wonder to myself, (Which? Pay attention to what she was saying, or look at her eyes when she was talking to me?)

Eye contact among autistics is a funny thing; some can do it easily, some situationally, some rarely, a few never at all. Interestingly, how well someone can make eye contact has no bearing as an indicator on how well one can socialize, the verbal-communicative abilities or other-communicative abilities, intelligence, sensory sensitivities, or any number of other traits sometimes associated with autism. (I also work with children with other developmental disabilities who can make excellent eye contact, but have great difficulty with verbal communication and other kinds of social interactions.)

Eye contact is also a cultural thing, as such is considered to be rude in other parts of the world, meaning that gaze aversion is not necessarily a problem elsewhere.

So basically, one’s ability to make eye contact when interacting with people doesn’t mean squat in regards to other abilities. It just means that making eye contact can be difficult.

Personally, it’s something I have to make a conscious effort to do in job interviews, doing public speaking, and in some conversations. This conscious process distracts from other mental efforts, such as the extra work required by my Auditory Processing Disorder, and making the eye contact is also distracting in itself because it detracts from my ability to retrieve and process information needed for the conversation. Some of my perceived “making eye contact” is really just me doing a little lip-reading when there’s background noise getting in the way of auditory filtering and decoding.

And yet, in this part of the world the eye contact issue is a big deal for some people, or so you’d believe from reading various kinds of autism resources. People spend great amounts of time ensuring that their autistic children learn to do this when they are expected to do so.

Like teaching a Deaf child to lipread and use speech, some kinds of social training are emulator processes. The perceived improvements in communication can be deceiving because the Deaf person is not necessarily getting the same quality level of communication from the process, and is working many more times harder than anyone else to get what they do.

Recent research by Dr Gwyneth Doherty-Sneddon and others at Stirling University has shown that gaze aversion reduces the cognitive load (amount of mental processing required), thus enabling both adults and children to better recall information and to better formulate responses. Requiring eye contact actually reduces the factual quality and the verbal complexity of responses.

So when we teach and require eye contact, what we must ask is, Who really benefits from this? Does it help the autistic? Or does it mostly just make the neurotypicals (NTs) feel more comfortable? Is the autistic really getting the same results (of being able to discern the non-verbal communication), or are they just going through the motions?

This is important – it’s not just window dressing designed to put others at ease – if the autistic person merely appears to be conversing typically, then the NT half of the dialog assumes that the rest of the communication is also happening. And of course, when something isn’t perceived by the autistic, the NT is frustrated and may erroneously attribute rudeness or lack of caring. And/or, the NT is confused because the non-verbal signals the autistic is giving off don’t jibe with what is “supposed” to be going on.

In any regard, if one is not getting the real or perceived benefits, then it’s just play-acting. It’s an elaborate social lie and a misrepresentation, and ultimately benefits no one. Furthermore, trying to stamp out gaze aversion makes various kind of mental processing more difficult, and for crying out loud, no one needs more mentally-taxing work!

Parents, therapists, educators and clinicians are focusing on the wrong thing (pardon the pun). Eye contact or gaze aversion is merely a sidetrack issue. What people are really concerned about is whether or not the individual of concern (child or adult) is truly engaged in the communication process. Is there mutual participation, comprehension, and the ability to share understanding and information? These are the real concerns that we need to be looking at.

andrea