The-Autism-Spin

The Autism Spin

pre-conference reflections

193128217x01_pe15_scmzzzzzzz__1Pre-Autism Conference
Reflections
Tomorrow I will attend Pamela Wolf berg’s seminar on integrated play groups with neurotypical and autistic children.  This is an interest that I have nurtured for the last 2 years.  During my student teaching I took advantage of having Adrianna Schuler as my advisor and began an Integrated Play Group under her supervision. 

I bought Pam’s book Peer Play and the Autism Spectrum. The Art of Guiding Children's Socialization and Imagination, and used it with great ease.  This is one of the most successful program implementation guide books in my experience. Pam provides case studies, vignettes, observation forms, and lists that are immediate, easy to use and well organized.  I was able to pick up this book, read through the first few easy to digest chapters and form a solid foundation for both defending the need for playgroups, as well as initiating the process of setting up a play group.   Dr. Schuler loaned me video’s of Pam demonstrating Play Groups in action, generated in the 1980’s to train other professionals to organize and run their own play groups. I was also able to begin assessing children in play, observing their play preferences, and their social play style.  All of these were crucial steps toward setting up a meaningful play group experience for the children I invited to participate.

Positive Points regarding this book:

  • A how-to field manual/guide
  1. Blueprint for an effective program
  2. Exceptionally well thought out and easy to follow/implement
  3. Innovative
  4. Full of rich techniques applicable to wide variety of children
  5. Versatile
  6. Easy to read (font, print size, illustrations)
  7. Based on extensive research
  8. "...operationalizing seemingly intuitive classroom-based pre-intentional 'hunches' not a formalized, research able training format" (Adriana Schuler)
  9. Contains Design tools for easy use: environmental design, rules, selecting materials, designing play area, designing play schedules, developing opening and closing rituals, fostering a group identity
  10. Assessment and observation forms
  11. Detailed profile of individual play development
  12. Many examples, case studies, vignettes, case illustrations
  13. Monitoring play initiations
  14. Scaffolding play
  15. Social communication and guidance
  16. Play guidance

July 18, 2005 in Books | Permalink | Comments (0)

Explaining the Enigma

Explaining_the_enigma_I read Uta Frith's book Explaining the Enigma for the first time last year.  After reading it, my question was: Why, in the 35 units that i had to take to get my credential in Special Education did no professor a.) mention this book b.) recommend this book? (Please note, that since the writing of this entry, it has come to my attention that professor Pamela Wolfberg uses this text in her autism class as required reading-) Subsequently i have found that this is a classic in the field of autism. 
Why do i enjoy this book? Uta Frith does not seem to have an agenda. If she had an agenda it would be to report on how her explanations regarding the key challenges for a person with autism, have stood the test of time. She originally proposed (in 1989) that the key challenges people with autism faced were an inability to recognize and think about thoughts (theory of mind) and an inability to integrate pieces of information inot coherent wholes (central coherence).  She suggested that it was here that the problems of communication, social interaction and flexibility originated.  In the re-issue of this book, she has updated her proposal with recent studies that are relevant. 

Her writing explores various theories, personalities and developments relevant to autism.  There doesn't seem to be a value, or opinion attached to her subject matter.  She uses words sparingly with precision and acuity. She gives a solid explanation with relevant examples to many frequently used terms in the study of autism:  mind-blindness, theory of mind (mentalizing), epidemic vs. syndrome, the Sally-Anne experiment, central coherence, Anderson's model of intelligence, school intelligence vs. world intelligence, rote memory, single mindedness, detachment, systemizing vs. empathizing, stimulus over-selectivity and sensitivity, executive functions vs. disfunctions, stereotypic actions, 

This is not a self help book, nor a personal account book.  This is a well written and highly relevant book about autism; the theories behind many aspects of autism from its etiology, to the intricacies involved in diagnosis, to understanding the behavioral, social and neurological implications of autism.  The tone of the book is scholarly, but engaging.  This is an excellent book for someone who wants an accesible overview of autism as it has been studied in a historical and scientific context.

June 28, 2005 in Books | Permalink | Comments (0)

Eccentric people

Today I picked up Eccentrics, A Study of Sanity and Strangeness by Dr. David Weeks and Jamie James.  I was struck by the possibility that 'eccentrics' as differentiated from those who are 'mad' were most likely also institutionalized (more or less, depending on the cultural climate of the times...) Deliberating this made me think of Uta Frith's book Autism, Explaining the Enigma.  She also writes about eccentrics in history (such as Victor, the wild boy of Aveyron and John Howard) who were most likely autistic.  And both talk about the  helpful effects that  being from  a privileged background have had on the treatment and perception of 'eccentrics'.   

One of the hall marks of an 'eccentric' is being "happily obsessed" with one or more hobbies/interests/pursuits etc. Other hallmarks are being 'non conforming', 'intelligent', 'non competitive, 'not particularly interested in the opinions or company of other people', possessed of a mischievous sense of humor', and being a bad speller. 
And this reminds me of...any one of a number of creative kids and adults diagnosed with Aspergers.  Innnnter-es-ting. 

How convenient that we now have all of these categories to eliminate any misdiagnosis.
And i wonder, as i have wondered many times before, how effective is it to 'diagnose' children, rather than accepting them for being different- 'eccentric' if you may.  Today it is proudly proclaimed that we don't have to institutionalize children with autism spectrum disorders.  There is talk about the great virtues of inclusive education, children no longer have to be 'shut-ins' as they were in the past.  Great. 
But what is being done instead?  Is the ever sought after diagnosis becoming a new way to marginalize?  Under the guise of sensitivity, are we actually just showing a resolute need to have children conform to what we expect a child should do, be, experience, feel, move, behave...?  How big is the line between an eccentric and an autistic? And where do our current cultural norms fit in?  Who decides?  Is it really so important that a child 'fit in'? Especially if the child appears not to be concerned or pained by this experience? Are we really treating our needs rather than the child's needs? How do we know what the child's needs are?

More on the topic of eccentrics, as i continue to read. 

June 16, 2005 in Books | Permalink | Comments (20)

Gift...

157174391x01_sctzzzzzzz_Gift From My Son, Autism Redefined, by Keli Lindelien 2004, is one of the most interesting I’ve read lately in the genre of:  ‘Books written by a mother about her autistic daughter/son’.  Which, in case you are not already familiar with the hype, is a genre steadily growing in proportion to the number of autistic children diagnosed in the United States, or so it seems.

So what makes this book interesting?  Is it the holistic approach toward autism that mother/author Keli Lindelien takes?  Is it in her relentless desire to truly understand her son, to see the world from his perspective, at times even attempting entry to his world?  Is it the fascination with physics and metaphysics that runs throughout the book?  The exploration of electromagnetic fields, free electrons, energy, atoms, radio waves, and the possibility that her sons odd behavior could be a direct response to these stimuli that we cannot see with the naked eye, yet can measure the presence of?

The book begins with a quote from the Talmud: 

“We don’t see things as they are.  We see them as we are.”

Keli makes it clear that the hypothesis of each of us having autistic attributes, in greater or lesser degrees, is probable. Either she has an incredible imagination (also probable) or she really was able to access the world of her son.  She used meditation to experience his world, as well as to find answers to questions that no one else could answer for her.  She also used her dreams to learn more about her self, her own perceptions, and what she held to be true.

In one of her first dreams, the universe speaks to her and says:

The only way to get through to this child is to work on your self-first. You’ll have to surrender many beliefs.  You’ll have to surrender many judgments. You’ll have to see, really see what is before you.  You must work on your self or you will not understand.  Some will think that the child is broken and needs to be fixed.  His challenges will come from what he encounters here,not the attributes he came here with.  You must undo the damage, and then unconditionally accept what remains. Pg. 28. 2

This dream sets the tone for Keli’s approach to her son.  She does not look at him as having ‘problems’ but rather as being a ‘gift’, and, unexpectedly, a teacher.  Benjamin teaches in unexpected ways that have far reaching positive implications on his family.  Through his propensity to mirror the emotional state of others, he teaches his family to look at their feelings, and to be very clear about what they are feeling and why.  He enables his family to begin asking one another what they are feeling, and why they feel a certain way. As the habits of family personal interactions begin to change, they realize that Benjamin’s tantrums and disquietude, also change. And thus, Benjamin becomes, teacher.

None of this comes easily, but in her retelling Keli does exhibit a certain grace and intuitiveness that can be absent in other books of the genre. She says:

Some parents describe their children being dragged kicking and screaming into a life in the world.  My journey would not involve dragging Benjamin into my world.  I had no desire to do that…I instinctively knew that I had to learn enough about Benjamin’s world to see if he could be coaxed into mine.  The only way I knew how to do this was to begin to trust my intuition and ask to be shown the nature of his condition.  I knew that I would have to go beyond conventional science and reason to a place where I could ”see” and “understand” what was not immediately apparent.  (Pg. 26, 5-6)

Keli takes on a role of sleuth, and student.  As a sleuth she immediately hones in on certain behaviors, (spinning, jumping, waving hands in front of eyes) and curious food choices, (black or kidney beans, cooked or raw carrots, apples or grapes, raisins, fast food French fries and homemade casein free bread).  She wonders why he craves french-fries so much when the rest of his diet is so healthy.  She makes many of these observations spanning all aspects of her son.  What is remarkable is her tenacity in connecting information to the observable clues, as a sleuth does.  For instance, after research she learns that her son has chosen an almost perfect macrobiotic diet, which is often prescribed for people with compromised immune systems. Because he also has many allergies to foods that are not in his diet, "Benjamin had selected a diet that was the least taxing on his body." Keli began to wonder if Benjamin had the ability to know his unique body needs well enough to choose a particular diet, what else did he know?

In addition she was also formulating a plan to help her son.  This plan included "finding ways to make him more comfortable in his body that didn’t include dulling his senses with medications", then figuring out exactly what capabilities Benjamin did possess.

Keli devotes a chapter to “The possible explanations” for her sons' perceptions; including reasons that serve as puzzle pieces to create a bigger picture of autism, that is not limited solely to the world of conventional medicine.  She extends her reasoning beyond what is ‘safe’ to talk about in a Western society, obsessed with finding reasonable explanations rooted in a science that we can see, touch and prove over and over again.  This methodology rejects the idea that we truly are all individuals, not only in mind and spirit, but also in body.

(As a slightly irrelevant personal note:  I am irritated by the double standard of America claiming all citizens asindividuals, having a right to life and liberty etc. And yet insisting on treating difference as an ‘illness’ with methods that focus solely on changing the behavior that makes the individual who they are- not understanding it, even accepting it, certainly not seeing some benefit in it.  I am also irritated by the reluctance of Americans to look at possibilities beyond western medicine; i.e., beyond fixing the illness(symptoms of the illness), rather than exploring a.) If this really is an ‘illness’ and b.) Why the supposed illness exists in the first place?)

After reading book after book that that claims Lovaas style behavior modification is the answer to changing troublesome autistic behaviors, this book was exceptionally refreshing.  If you want to read another perspective on what it means to raise a child with autism, I recommend this book.  Keli Lindelian also offers chapters on how to work with children with autism, as well as an inspirational bibliography. 

June 13, 2005 in Books | Permalink | Comments (0)

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Recent Posts

  • back from a hiatus
  • The nuance in play
  • pre-conference reflections
  • Autism Conference, Nashville, TN- July12, 2005
  • Explaining the Enigma
  • Eccentric people
  • Gift...
  • Spinning Out never seemed as fullfilling as a dip in the sea
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