Our Society And What the COVID Pandemic Lays Bare For All To See

We have all see the fissures the pandemic has exposed...let's venture in and examine how they got there in the first place.  In Nicholas Shaxon's book The Finance Curse - How Global Finance Is Making Us All Poorer explains it well.  And don't be put off by the title - very readable, at times actually a page turner.

Building on the accepted and familiar concept of free market capitalism and healthy competition we have moved (or should I say finessed) to finance capitalism and monopolies.  I'm old enough to remember when monopoly was a dirty word.  Not so now.  The courts have replaced concern for concentrated control of a market to a focus on keeping consumer prices down - a huge shift.  We have heard the mantra that we need to get lean and mean to compete in the global economy, but there is no "we."  In fact, in finance capitalism there is not society, so no wonder our infrastructure is crumbling - our schools, town, and states scrambling for funds.  The pandemic is only amplifying this.

Financial derivatives, financial sector, commodity swaps, futures contracts, limited liability, stock buybacks, tax havens... the vocabulary swirls around us in the news, but do we understand what these words actually mean and how these financial tools are used?  I sure didn't except in the most vague sense, and the effect deliberately obscures what is going on.  Shaxson writes that "The finance curse constitutes one of the most significant, troubling, and complex national security threats the Western world has ever faced."  And many of us don't really see it!

It reaches us in various forms, but you will recognize them; hospital closings, large corporations bully communities into accepting compromised PCB (or other toxin) cleanups, public school special needs programs get slashed, teacher layoffs, water giants get rights to regional aquifers, family farms destroyed, meat packed with antibiotics and hormones, and politicians that aren't acting on our behalf, etc...

Saxson's book takes the world of finance that is dominating our nation, and much of world, and pulls it out into the sunlight, demystifying its parts and how they are used to drive the economic inequality divide even wider at breathtaking speed.  This is an important book.

(If you are going to purchase it, try to avoid Amazon. )
The photo is by my son, Sean McCabe.

The Pandemic Forced Slow-down and Reading

People have complained that their sleeping patterns have been disrupted and they have trouble concentrating.  I count myself in their numbers, though it is improving as I adjust and learn to live with the underlying anxiety caused by the pandemic.  A friend of mine recently said she hasn't been able to read.  I totally get it.

When work stopped abruptly and I was confined to my apartment (since I'm in the at-risk category) suddenly I had endless hours of unstructured time.  Like many others the first week was dedicated to cleaning, and my apartment sparkled like never before.  But with that done and long walks still leaving me with the bulk of the day, I turned to books.  My daughter had dropped off a pile of them and they had been sitting in a tidy stack on the coffee table untouched.  She had mentioned that the top one was a page turner though not particularly well written, and it's that one that launched me.

It's not that reading is new to me, but with work dominating my days and evenings (fellow educators will understand how teaching prep can eat up time like no other), my reading time was short snatches, diving briefly into passages between classes, and before bed when my lids were on the way down. I was out of practice, plain and simple.  Fortunately, the page-turner got me back into the habit of extended uninterrupted reading, and now I can read more elevated text and go into what Maryanne Wolf (maryannewolf.com) calls a slow deep read.

Wolf makes the point that reading on-line is very different.  We tend to skim, searching for the information we are looking for and find relevant.  It's fast and efficient, but a totally different kind of reading, and one most of us do a great deal of.  The slow deep reading of books needs to be practiced or it gets weaker and takes more effort.

So, if you are having trouble curling up with a book and doing the slow, deep read, you might consider picking up a low-brow page turner just to get back into the swing.

How Students Respond To Text Matters - This is what the research tells us:

 

Summaries: 
Writing summaries has the strongest impact on reading in all grades, but especially in elementary grades. Identify the main information,and write a synopsis with supporting information for each paragraph. 


 Write Notes:
This is more effective than underlining,  Report Form and Story Form, by Project Read https://www.projectread.com/ is a great program - very kid friendly and easily modified for older students.  I've also used Postit notes.  For fiction, Comprehension Booster app is very good. (See an earlier post.)

Answer Questions In Writing:
This is better than verbal responses and more memorable.
Teach the difference between a good and poor question.  Have students create questions from the text
and answer them.   If they can't answer it, just have them make another one that they can answer.

Teach Spelling and Sentence Structure:
Both improve reading.

Other Recommendations:
My mantra - ongoing practice, explicit instruction.   All of the above can be applied to narrative texts as well as expository and across all subject ares. 

 

Social Skills Instruction for Kids and Adults with Aspergier Syndrome

Just finished reading a wonderful article by Susan Stokes, "Using Technology for Social Interaction Skills Instruction for Children and Adolescents with Asperger's Syndrome."  You can find it at Closing the Gap,
 
You have to be a member to have access to their articles, but it's a great organization and resource.
 
Stokes reminds us how limited the rote responses are that are taught to school children who are on the spectrum, that social interactions are complex, varied and can be very subtle.

 
Stokes writes that individuals with Asperger Syndrome are generally average or above average intelligence, yet "Social interaction skills are a huge predictor of a person's success later in life, much more so than cognitive functioning."

The article lists many low tech strategies as well as the use of videos and software.  The one that caught my attention was Mind Reading, a software program developed by Simon Baron-Cohen. 

It includes over 400 emotions and facial expressions, the level can be adjusted, and it has interactive games.  It cost $249.97 new, but Amazon has used copies at a considerably lower price.  This is certainly worth exploring.

We Are Not Designed for Reading

Speech, yes.  We've got great speech apparatus: lips, tongues, vocal cords, and we can make shrill or deep sounds.  But reading?  No.  We had to adapt part of our brain that was designed for facial recognition, train it for dual purpose.  (Of course some of us have adapted very efficiently and others not so much, That's where my work comes in.)

And now our reading brain is going through another change, this time in response to technology, reading on screens whether it be computers, tablets or phones.  Marianne Wolf, a reading researcher, has written about this change and it's potential danger.  She points out that when we read on a screen we tend to skim read and with less attention.  We all do it.  Wolf admits to doing it herself.  When we skim-read we tend to look for keywords, we tend to confirm what we already think rather than critically entertaining new ideas and concepts. 

When we read printed text we can of course skim as well, but when we find what we are looking for, or are reading fiction, then we go into a slow and deep read.  We take time to ponder, reread, question the author, reflect on our experiences, what we already knew, and possibly revise it. 

In our deep-slow reading of fiction there is another aspect that is invaluable and may be at risk.  Fiction can transport us into all kinds situations, cultures, personalities - present, past and future.  Studies show a link between reading fiction and the development of empathy.

Wolf rightly points out that the loss of critical thinking and empathy is a threat to democracy!  So go for a deep dive, practice that slow read. Make time for it, even if we skim on screens.

We Cannot Assume

I came across this article recently.  It reinforces my experience working with people on the spectrum. We cannot afford to rely on our observations of the students' performance as a true expression of their cognitive ability.  The landscape with these students is far more complex.

Diagnosis Disruption: Debunking the Myths of Non-verbal Autism

Posted on January 5, 2017 by growingkidstherapy

Autistic individuals are the true autism experts. Matthew Lager’s TASH Talk debunking the myths of non-verbal autism is a must read for anyone who has an autistic child or works with autistic individuals. Matthew uses a letterboard and keyboard to spell to communicate. He prepared this presentation for the 2016 TASH conference with his mother over a several weeks. Due to the 10 minute time limit of the TASH Talk, Matthew’s speech was read aloud for the presentation with spelling closing remarks live. Matthew’s goal is to challenge people to rethink autism and understand the capabilities of people who have been labeled as “low functioning”.  ~Elizabeth & Matthew  

Thanks for letting me speak today. Thanks to TASH for including me and for your commitment to advocating for an easily dismissed segment of society.

I am going to share my experience of being erroneously mislabeled as low functioning and of low intelligence. My story is representative of thousands of others labeled as low functioning. My life changed in ways most can not comprehend the summer of 2014 when my parents took me to Herndon, Virginia to see Elizabeth Vosseller. My hero, Elizabeth, introduced me to the letterboards. Through a letterboard and now keyboard I am able to communicate my true thoughts by spelling them one finger at a time.  I wrote this presentation on a key board tapping the letters one at a time.

The topic of my talk is:  Diagnosis Disruption: Debunking the myths of non-verbal autism.

Many people view me as being stupid, emotionless and without the ability to understand other people’s feelings. It is not a surprise because scientists describe autistics so inaccurately. I am here to tell you we are much more complex than you believe and also more ordinary than you realize. We are confusing and difficult to understand because our exterior doesn’t match our fully intact brain.  We have sensory problems that make us look out of control. Some of us have voices that don’t say what we mean. Others have motor planning impulse control issues that make us do things we didn’t mean to do.  In spite of the tremendous challenges we are all just like you with complex thoughts and feelings.

Scientists typically look at three key areas when determining whether someone fits the criteria for further screening for autism spectrum disorder.  The three areas are impaired social interaction, impaired communication and restricted or repetitive behavior.  They often assume that functional problems of speech, social interaction and unusual behavior are indicative of low intelligence and poor cognitive function. They create checklists to define the behavior we do that is not typical without understanding that many of these behaviors are in fact motor based rather than a cognitive deficit.

At my previous school, I was not allowed to spell to communicate and therefore was unable to change their incorrect assumptions of me.  They were unable to see beyond my atypical behavior. As a result, I was taught at the first grade level last year.  My new school was open to seeing me differently and allowing me to use the letterboard all day.  I am now taught at grade level which is eight grades higher than instruction at my previous schools. I wish they could see me today and perhaps treat others with so called low functioning autism differently.  This school move only occurred when a group of experts in the school system were willing to suspend their preconceived ideas about autism. I hope you are willing to do this also by hearing what my friends who are here and I have to say.

I am going to ask you to look at a few more examples from my perspective.

While on the surface these scientific descriptions seem accurate, I am going to describe how what you see in many autistics is not the full or true picture.

1)  Wild erratic movements without purpose: When I look most dysregulated I am reacting to overstimulation and sensory overflow. It is impossible for anyone to evaluate my internal state when just looking at my out of control body. For example I become very dysregulated, cover my ears and make an odd sounding noise when people sing happy birthday.  The out of tune singing, especially my mom’s voice (just kidding mom), makes me feel anxious and covering my ears and making noise muffles the sound. When people see my reaction they assume I don’t want to be part of the celebration and stop including me when in fact I love birthdays and just need a coping mechanism to participate.  When I appear totally out of control, I am internally trying to focus and calm myself during an overly sensory stimulated situation.

2) Inability to initiate or sustain a conversation: Experts claim low functioning autistics are unable to hold a conversation. It is true that I am unable to do it verbally. However I can have full and meaningful conversations with my friends and others if I am able to type my part of the discussion.  I have three friends in the room today who communicate the same way I do.  I wish scientists or disbelievers would watch our interactions and see firsthand the complexity of our discussions, the way we support each other and how emotionally connected we are to each other and the world.  One of my friends dreams of being a writer. Another really wants a girlfriend.  All are interested in a full life with the same opportunities for education, living arrangements, jobs and community that any other person wants.

3) Odd, repetitive behavior: My behavior that experts describe as repetitive and without purpose is actually very useful in calming a highly stressful situation. For example, I often ask repetitive questions when I am nervous about a transition or don’t know how to get the words I want to say out of my mouth.  I understand why experts think these behaviors are odd but understanding the reason we do them is crucial to understanding us.  A good example of this is my obsession with the Wiggles. I talk about them all the time but can’t stand them. As annoying as it is to be 15 and talking about a preschool music group, reciting their lyrics does calm me down when I am stressed.

4) Poorly developed imaginary play: I have been told those with autism have no imaginary play skills. If only someone could get inside my brain you would see how I am always creating stories to pass the time when I am being ignored. I create stories about people traveling around the world and meeting famous historical figures. One of my favorites is of my friends going to meet Abraham Lincoln and talking to him about emancipation of those in society who are disenfranchised. So, I will continue to fail the tests researchers use, like putting plastic figures in front of me and asking me to pretend some contrived story.  However, when I see the figures I’ll pretend in my mind the figures are Lincoln’s soldiers who may have lost this one battle but can still win the war.

5) No or limited interest in social interaction: I understand why someone thinks I’m a loner and prefer isolation. However this could not be further from the truth. In social situations I sometimes leave the room when others are trying to interact with me because i am so excited and my body experiences a rush of such intense happiness that I launch like a rocket out of the room.  When I come back unfortunately the social interaction is lost and even worse than losing that one opportunity I likely pushed the person away for good.  This is one of many examples of how my outward behavior doesn’t match my strong insatiable need to be with others and how researchers don’t understand me. I want friends more than anything. I am lucky that now for the first time I have a group of people who I feel close to and who I feel understand this.

Every time someone with autism is allowed to share what goes on in his mind it gives experts more information and insight into the complicated inner workings of those of us who are so misunderstood. Hearing from Autistic individuals is integral to scientists understanding us and our critical and empathetic thoughts. By doing so, they can study the huge gap between the vast amount of intelligent, intricate, and inventive thoughts that we have in our minds and our difficulty sharing them in a typical way.

In closing so called experts need to start by assuming that their patients with autism are truly thoughtful and intelligent. Entering the patient/clinician relationship with this shift in thinking is the most important first step. Allowing us alternative forms of communication combined with researchers commitment, dedication and hard work we can actually make changes to research protocols that will make a difference in my life and others like me.

So, death to the idea of the empty headed autistic. I hope that people will see me and my friends beyond our exterior and see us for the people we really are.

**Note: we had blue tooth connection issues with the keyboard during the presentation resulting in repeated letters.  We edited the additional letters below for readability. 

I am happy to be here and have a chance to tell our story. Please spread the word and let others know.

A Simulation

What's It Like To Be Dyslexic?

Here is an excellent simulation of what a dyslexic reading experience is like.
http://geon.github.io/programming/2016/03/03/dsxyliea

Snap and Read Universal - A Text Reader

Snap and Read Universal is impressive!  Many text readers are limited in what they can access, but this program will read any digital text: web articles, pdf’s, Bookshare, cloud  text, Google Docs – and I bet I left something out.  Did I mention that the voice is nice, nothing unsettling about it.

There’s more!

If the text is too difficult it can simplify it.  If you need it translated, it will do that too.

You can highlight parts of the text, put those selected parts of the text into an outline and organize them.  It can even create a bibliography.