The-Autism-Spin

back from a hiatus

It has come to my attention that once-upon-a-time,  i began to blog about books i was reading, and seminars i was attending on Autism Spectrum Disorders  (ASD's).  This  blogging was a result of a near obsessive, or lets face it...rather obsessive curiosity and intrigue over Autism.  I must have read over 30 books on the subject (only a few of which i blogged about), not to mention the endless pages of research, on line information, other blogs, interviews, magazines...not only did i read them in English, i also read them in Turkish. 
Then, after jumping through 57 different multicolored hoops, standing on my head whilst eating spaghetti from a revolving bowl, and other dehumanizing efforts,  i was bestowed with my (preliminary) teaching credential, deeming me worthy to teach the individuals that i obsessively studied.
That appears to be when the blogging ended.

Now, 3 years later...i have paid Type Pad my monthly fee and i am back.
You, gentle reader,  will have the opportunity to read about what i have seen that passes for 'autism' in the public school system from a teacher who is still obsessed with autism, but also rather disgusted with the San Francisco Public School system that purports to serve them. You will also  hear  points of interest regarding my experience in a  Non-Public school that serves only children with autism. 

Yes, you do hear a touch of cynicism.

The nuance in play

Autism Conference, Day 1
Workshop on the Integrated Play Groups Model



    I felt honored when Pam interrupted her own lecture to recognize me.  I had no idea that she even remembered my name.  When one attends a large university like SFSU, one doesn’t assume that they are any thing more than a number or a vague impression.  I suppose having interesting hair is also instrumental in being recognized:  “I’d remember that Mohawk anywhere!” 

    Because I was already familiar with the Integrated Play Groups (IPG), the information itself was not new.  The theory, guidelines and procedures for setting up a playgroup, as I discovered from setting up my own, are the easiest parts of the process.  The true art of being a good facilitator lies in the interpretations of behavior, and facilitation of communication that is not intrusive in the least, and serves to promote a bridging of common goals- learning to play with other children.   It was with the goal of learning more about the art of facilitating IPG that I attended this seminar. 

    To the uninformed casual observer, IPG could look fairly benign.  Put a couple of typically developing kids with an autistic kid, provide toys/activities that promote interaction, set up boundaries and rules, then sit back and observe, whilst tossing in some stock phrases such as:  “What do you think Johnny wants to play with?” and “How can you show Johnny what you want?” 
    However...

    Scaffolding- a buzz word in special education- is the nearly intuitive ability to know where a child is currently (in this context, her play/interactive skills) and to provide a structure that is bare enough to support building, but not so bare as to fall apart.  Think of a sculpture.  Before building the sculpture, the artist first must create an armature (a scaffolding) that gives the initial shape, informs the artist where to put the sculpting material in order to create the finished product, and supports the sculpture so it doesn’t collapse.  It is in this fashion that monuments are built.  In the IPG model, scaffolding is building a structure of support around the needs of the target student.  In order to do so, we must first use keen observational skills to find where that child is in their play development.  As with any behavior, play too is developmental.

    The key to being a good facilitator, and thus accomplishing the goals of integrated playgroups, is to be an excellent interpreter.  Children with autism are sending messages, just as clearly as typical kids do with their voices.  The difference with a typical child and a child with autism (CWA) is this: provided you speak the language of the child, and are not hearing impaired or deaf, you can easily interpret what the typical child is saying.  The child with autism is another ball of wax altogether.  For some, this understanding comes naturally, perhaps the facilitator recognizes responses in the CWA that they too have experienced. For others, it is a studied skill.  It requires intimate knowledge of how the bodies sensory systems operate, studying developmental milestones, and reading the communicative intent of children who do not know how to communicate through conventional means. 
This is complicated.

So what did I learn? 

1.    The setting of the space and materials chosen for play took on a greater significance.  I began to refine my ideas of how successful play spaces could be created impromptu.  I thought about the boundaries of a play area, how important they are in establishing the proximity of the children to one another, and how they will interact.  I began to think about problem solving as a way to ignite an interaction that all could participate in.  Ex: (problem): we don’t have a wall to our house/store/submarine etc., how do we know where is inside and where is outside?

2.    I began to realize that I had been using a particularly useful technique in drawing the attention of the other children around a particular act or way of playing that the CWA was engaged in and asking questions leading to how they might interact together.  A technique becomes even more useful when one is cognizant of using it. 

3.    To chill out and not get so involved- to let the play take its course- I can be in the playing, yes, but it is not about me.  It is about a preferably invisible hand that provides support, structure and boundaries so that children playing feel safe to explore and take risks.  It is not up to me to interpret every action- I need to trust in children’s play, allowing them to make their own interpretations.  They are after all sentient human beings with thoughts and opinions that happen independent of me.  I need to respect this and allow it to happen. 

4.    It is helpful to look out for developmental milestones to see where I can prompt the child to move next- or what I may expect her to be exploring in the near future. 

5.    Identifying a child’s likes and dislikes are very important- as is helping children to uncover one another’s likes and dislikes through guided observation. For example:  if Sol (a typical child) doesn’t seem to catch on that Ray (the CWA) becomes visibly shaken when Sol raises his voice, it may be necessary to show Sol how Ray responds to loud noise, and ask him what he can do to help Ray.

6.    There is much to be learned through observing video clips of Play Groups.  The subtleties and nuances of decision making on the part of the facilitator take on greater significance when viewed in the moment.

7.    Being a succesful facilitator requires having a quick, excellent imagination...in other words, being able to play well. It is part of this facilitation that enables the play to flow, and for behaviors that a CWA may perform out of context in isolation to be interpretted as relevant by her fellow play mates.

8.    Dont be afraid of props.  They fuel the imagination.

9.    Play is a process- The product is immaterial.

10.   Kids play as all mammals play. They can read social cues and know the difference between play as fighting, and fighting as fighting. These signals are, when you think about it, really complicated, relying on subtle cues.  To conceptualize in another species, I visualize the way dogs play- they bare thier teeth, and growl, but each dog knows what the other dog's intention is.  One of the objectives in play is to teach children who dont understand these cues how to begin seeing them- or how to adapt around them.
This is complicated...
But fun.

pre-conference reflections

Pre-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

Autism Conference, Nashville, TN- July12, 2005

36th Annual Autism Society of America Conference in Nashville, Tennessee as experienced by the author
A four-part series

    Let me first state that my feelings of excitement in anticipation of a conference on autism are the equivalent of a pending trip to Disney Land for a child with a Mickey Mouse obsession. Maybe even greater. 
    Why?  In surveying the edges of this enthusiasm, I have come to the following three conclusions.

1.)    My mother is exceptionally content putting together puzzles, patiently figuring out geometry problems, learning to program the video player, and other non-human related problem solving exploits.  My father took pleasure in solving everyone else’s problems, whilst living his own multiple lives (a glaringly unresolved problem existing conveniently in his blind spot).  I have a genealogical history of a need to figure things out- all in a thinly disguised effort to be closer to self, to understand self- for self IS intrinsically connected to all of this problem solving.  Autism happens to be one of those ‘things’.

2.)    If the autism experience truly is comparable to tripping on psychedelics due to the possibility that milk and wheat proteins turn into opiates with out the appropriate enzymes, (possibly) also entering the blood-brain barrier where they could overwhelm the bodies natural enzyme system that break down natural opiates or endorphins, creating in response, a reaction through disrupting the neurotransmission in all main systems, and consequently affecting perceptions of all the senses- I may be able to relate.  (Note: this is an extremely simplified way of explaining this process- for more in depth information on enzymes, digestion and autism, see Dr. Kalle Reichelt’s ‘Opiod Excess’ Theory.   Paul Shattock at the University of Sunderland is also a leader in research on biochemical interactions in people with autism.  Bernard Rimland of DAN and ARI is also a leader.)

As a child I had an innate propensity toward hallucinating and experiencing the world in hyper-sensual, stereo-Technicolor, or HSST. (This is also a jarring sound that some men make to get a young woman’s attention.) 
As a young adult I had a propensity for exploring and regulating my environment through psychedelics.

3.)    I generally like people with autism, as I like cats, artists, philosophers and scientists (who may or may not also be autistic). I feel comfortable around them, and they make sense to me.  In many respects I feel that uncovering the mysteries of autism is a metaphor for other conflicts we all face at one time or another- pain, doubt, fear, ecstasy and anxiety.  I don’t believe a conventional life (however one chooses to define ‘conventional’) is a measure of happiness and achievement, or success in the realm of human existence.  I think there is much that doesn’t even enter into our consciousness as possibilities for personal contentment in life.  Illustration: Less than 2 decades ago it was inconceivable that millions of pieces of information could be stored in a metal chip the size of a fingernail. Today we walk around with I-Pods that hold thousands of digital songs in the palm of our hand. We organize our hectic lives with multitasking hand held digital personal organizers. Yesterday it was hard to accept the mechanics of electronics that were not analog, today we are asking what comes after digital, what is smaller than digital? Our conceptions grow when we are faced with the drive to progress (pro-GRESS). 

My interest in autism is magnified by the diversity of viewpoints regarding the autistic individual.  At one time it was easy: The refrigerator mother causes Autism. 
Now it seems we all have an opinion on what autism is, what it isn’t, how it should be treated, and even How it should be conceptualized- for it is the conceptualization of the state as “disease, gift, difference, beast, exceptionality, disability” to use a few widely publicized words, that fix the image of autism in our minds, and inform our ideas for treatment.   The dominant viewpoint of autism based on books written in the United States by parents of autistic individuals and the professionals that they work in conjunction with, seem to be one of ‘saving the child’ from the ‘clutches’ of autism.  My favorite example of this viewpoint currently is Karyn Seroussi: In her book Unraveling the Mystery of Autism and Pervasive Developmental Disorder, she says:

     …Will I fight this thing; beat it down until it exists no more to torture innocent families?  This goal             will become part of my life, my daily purpose, my reason for living. I have no choice.  I will be             driven in a way that I never dreamed I could, and I will not rest until the beast has been slain.

    She seems to see ‘autism’ as an intruder a “thief” as she refers to it else where in the book.  It reminds me of the stories of a ‘child snatcher’ who would come in the night and steal unsuspecting children from their beds.  In the United States this entity was also known as the ‘Boogey-man’.

Bernard Rimland, (a brilliant man for whom I have a great deal of respect for) coined his organization on autism research,  ‘DAN’, an acronym for “Defeat Autism Now”.  Observation: There is violent imagery in approaching the autism difference, as though it were a loathsome criminal, a beast with no heart, George Bush Jr…

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.

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. 

Gift...

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. 

Spinning Out never seemed as fullfilling as a dip in the sea

When i was a little girl, i liked to spin. Arms out to the side like airplane wings- I closed my eyes and with mini mincy little-two-step-stamping of ants in stilleto's, I spun. First one way- mince mince mince- then the next way- spin spin spin- no suger was made but that was okay. Some times i fell down. Always, i exhilerated in watching the earth spin around me- I was at the epicenter of the action- I made the world go round.