Living with Autism (Douglas Biklen, Ph.D.)

8/7/2019 Living with Autism (Douglas Biklen, Ph.D.)

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Autism:mountains of practical

moments (i.e., the struggle forperformance)

Douglas Biklen, Professor and DeanDouglas Biklen, Professor and Deanof the School of Educationof the School of Education

Syracuse UniversitySyracuse University


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Investigating Autism through

Ethnography

Autism and the Myth of the PersonAutism and the Myth of the Person

AloneAlone (D. Biklen, NYU Press, 2005)(D. Biklen, NYU Press, 2005)


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Leo Kanner, 1943

People with autismPeople with autism

evidenceevidence no interest inno interest inour conversationsour conversations


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Hans Asperger, 1944

The autist is only himself andThe autist is only himself andis not an active member of ais not an active member of a

greater organism which he isgreater organism which he isinfluenced by and which heinfluenced by and which he

influences constantlyinfluences constantly


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All autobiographical quotations

cited in this presentation are by

Sue Rubin, Jamie Burke, Tito

Mukhopadhyay, and Alberto

Frugone from their chapters in

the book: Autism and the Myth

of the Person Alone (2005)


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Processing and Praxis

greeting does not comegreeting does not come

naturally. I require a level ofnaturally. I require a level of

focus and prompting in order tofocus and prompting in order to

react in a socially acceptablereact in a socially acceptable

fashion.fashion.

S. RubinS. Rubin


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Initiation

As far as initiation of interaction, if theAs far as initiation of interaction, if theperson has autism, donperson has autism, dont count on it.t count on it.

S. RubinS. Rubin


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Difficulties with multiple steps

(sequenced motor performance):

When I was 15 I tied my shoesWhen I was 15 I tied my shoesand people rejoiced.and people rejoiced.

J. BurkeJ. Burke


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Are some tasks easier to

accomplish than others?


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Elementare WatsonAlberto Frugone


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The Challenge of Playing

Why did that boy give the ball to thatWhy did that boy give the ball to thatlittle boy and not to the girl who waslittle boy and not to the girl who was

wearing the red dress?wearing the red dress? There were soThere were so

many movements to choose from.many movements to choose from.

T. MukhopadhyayT. Mukhopadhyay


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Fascination with objects:

Certain objectsCertain objects arearesomewhat my salvation, such assomewhat my salvation, such as

my love for water and plasticmy love for water and plasticobjects, which people dismissobjects, which people dismiss

as having no use.as having no use. S. RubinS. Rubin


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Overstimulation

I use the time in front of theI use the time in front of thesink as an outlet duringsink as an outlet during

crowded times. It is acrowded times. It is arelaxation toolrelaxation tool.. S. RubinS. Rubin


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People, Objects, andPreoccupations

Picture me walking into a room,Picture me walking into a room,the crowd of people parts and thethe crowd of people parts and the

object I desire most on the otherobject I desire most on the otherside of the room has every ounceside of the room has every ounce

of my attention. There is a glowof my attention. There is a glow

around itaround it.. S. RubinS. Rubin


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Social Relations

at times where autism is in control of myat times where autism is in control of mycapability to relate to those around me. Thiscapability to relate to those around me. This

does not mean that I dondoes not mean that I dont enjoy socializingt enjoy socializing

with my peers but at times autism will notwith my peers but at times autism will notallow me the desire to socially interact.allow me the desire to socially interact.

S. RubinS. Rubin


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Creating Buffers

Many autistic people try to cutMany autistic people try to cutaway the various inputs of soundsaway the various inputs of sounds

by producing their own convenientby producing their own convenientsounds so that the other sounds getsounds so that the other sounds get

to the backgroundto the background..T. MukhopadhyayT. Mukhopadhyay


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Doing Two Things at Once

IIm sitting in front of the TV set, Im sitting in front of the TV set, Ihear the words and I can decipher theirhear the words and I can decipher their

meaning, but I donmeaning, but I dont use my visualt use my visual

perception simultaneously, otherwiseperception simultaneously, otherwise

my attention would go.my attention would go.

Alberto FrugoneAlberto Frugone


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Processing the Auditory andVisual Simultaneously

I tend to not like to watch movies either,I tend to not like to watch movies either,

unless there are subtitlesunless there are subtitles . It makes the. It makes the

experience much easier for me toexperience much easier for me to

understand and digest as a whole.understand and digest as a whole. S. RubinS. Rubin


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Word Meaning

I am still working on understanding whenI am still working on understanding whenothers are being facetiousothers are being facetious.I tend to.I tend to

frustrate myself for not understandingfrustrate myself for not understanding

othersothers sarcastic notions, though I expectsarcastic notions, though I expectthem to understand mine.them to understand mine. S. RubinS. Rubin


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My voice was not a true one.

I had to pick the choice II had to pick the choice I

heard.heard...J. BurkeJ. Burke


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Intentional versus AutomaticSpeech

If someone asks meIf someone asks me Do you want to go toDo you want to go tothe bathroom? Yes or no?the bathroom? Yes or no? I will typicallyI will typicallyanswer with a yes because it is the firstanswer with a yes because it is the first

word in the sentence that my autistic brainword in the sentence that my autistic braingot stuck on.got stuck on.

MyMy YesYes answer does not mean that I doanswer does not mean that I donot understand the question.not understand the question. S. RubinS. Rubin


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Automatic Speech

My speech is very limited and most of theMy speech is very limited and most of thetime echolalic in nature.time echolalic in nature. DoDo dada deedee newtnewtnana nay,nay, is always a favorite echolalicis always a favorite echolalic

phrase. It has a singphrase. It has a sing--song rhythm to it andsong rhythm to it andhas been termed my signature phrase.has been termed my signature phrase.

it is a familiar tape running through myit is a familiar tape running through myhead.head. S. RubinS. Rubin


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Communication and behavior

I am ashamed to sayI am ashamed to say II have thrownhave thrownmany a tantrum to get my needs met.many a tantrum to get my needs met. II

am now seeing that when I need somethingam now seeing that when I need something

I must communicate it, in other words byI must communicate it, in other words byusing a verbal prompt such as the two basicusing a verbal prompt such as the two basic

words ofwords ofneed help.need help. S. RubinS. Rubin


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Ritualistic responses

When I was youngerWhen I was younger . If I saw someone. If I saw someonefor a week while they were on vacation,for a week while they were on vacation,then the next week I expected them to stillthen the next week I expected them to stillbe part of my life.be part of my life.

An example of my literal thinking is thatAn example of my literal thinking is thatwhen I see a Lexus I shout out Rita (mywhen I see a Lexus I shout out Rita (mymothermothers name)s name)..

S. RubinS. Rubin


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To simplify and make order:

he tends to take thehe tends to take theshelter of his rulesshelter of his rules



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Living by the Rules

Rules are somewhat the very proof to anRules are somewhat the very proof to anAutistic person that he exists.Autistic person that he exists. I get a sortI get a sort

of self existing sense when I have followedof self existing sense when I have followed

a routine set of activities.a routine set of activities.T. MukhopadhyayT. Mukhopadhyay


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Automatic Reference Points

People with autism like routines, and ifPeople with autism like routines, and ifthose routines are broken it does not meanthose routines are broken it does not mean

that we donthat we dont understand what is happeningt understand what is happening

it just means that it is harder for us thanit just means that it is harder for us thanmost to stop our brains from spinning offmost to stop our brains from spinning off

into their regular patterns.into their regular patterns. S. RubinS. Rubin


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Eye Contact

My inability to look at someone whenMy inability to look at someone whenspeaking to him or her does not mean I amspeaking to him or her does not mean I am

avoiding the person as many presume.avoiding the person as many presume.

Sometimes, eye contact literally is painfulSometimes, eye contact literally is painfulfor me to achieve.for me to achieve. S. RubinS. Rubin


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Too much to look at:

When I was out in theWhen I was out in theworld, I was too scared toworld, I was too scared to

look around and to judgelook around and to judge

what I was seeing.what I was seeing.A. FrugoneA. Frugone


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Attention and Focus

Male professors withMale professors withdominating voices and littledominating voices and little

breaks in their lecture is where Ibreaks in their lecture is where Ifind the greatest comfort.find the greatest comfort.

S. RubinS. Rubin


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Reality and Fantasy

My mother managed myMy mother managed myfantasies with quibblingfantasies with quibbling

questions.questions. My mind wasMy mind wasfilled with mad thoughtsfilled with mad thoughts

A. FrugoneA. Frugone


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Anxiety

I could see the vehiclesI could see the vehicles

coming but I was not gettingcoming but I was not gettingthe distance. And the windthe distance. And the wind

hitting my face was awful.hitting my face was awful.T. MukhopadhyayT. Mukhopadhyay


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Aware of the World and thePerspectives of Others

I will go around like that.I will go around like that.

Young people are too happy.Young people are too happy.

How is the taxi charging.How is the taxi charging.

Tito MukhopadhyayTito Mukhopadhyay


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Performance Difficulties Under

Pressure but is it Evidence of

Incompetence

You know that your intelligenceYou know that your intelligence

or stupidity would get measured byor stupidity would get measured by

that performance of yours. Youthat performance of yours. Youtend to get very clumsy.tend to get very clumsy.



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Severe Mental Retardation Defined: DuringDuring early childhood years, they acquire little or noearly childhood years, they acquire little or no

communicative speech.communicative speech.

During the schoolDuring the school--age period, they may learn to talk andage period, they may learn to talk andcan be trained in elementary selfcan be trained in elementary self--care skills.care skills.

Limited profit from preLimited profit from pre--academic subjects, but can masteracademic subjects, but can mastersomesome survivalsurvival words.words.

In their adult years, may be able to perform simple tasks inIn their adult years, may be able to perform simple tasks inclosely supervised settings.closely supervised settings.

Most adapt well to life in the community, in group homesMost adapt well to life in the community, in group homesor with their families, unless they have an associatedor with their families, unless they have an associated

handicap that requires specialized nursing or other care.handicap that requires specialized nursing or other care.

(American Psychiatric Association DSM(American Psychiatric Association DSM--IVIV--TR, 2000, pp. 43TR, 2000, pp. 43--44).44).


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An AlternativeAn Alternative

Framework:Framework:

PresumingPresumingCompetenceCompetence


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References:

Biklen, D. (with Attfield, R., Bissonnette, L.,Biklen, D. (with Attfield, R., Bissonnette, L.,Blackman, L., Burke, J., Frugone, A.,Blackman, L., Burke, J., Frugone, A.,

Mukhopadhyay, T. R., & Rubin, S.) (2005).Mukhopadhyay, T. R., & Rubin, S.) (2005).

Autism and the myth of the person aloneAutism and the myth of the person alone..

New York: New York University Press.New York: New York University Press.

Wurzburg, G. (Producer/Director) (2004).Wurzburg, G. (Producer/Director) (2004).

CNN Presents:CNN Presents: Autism is a worldAutism is a world[Documentary film]. Atlanta: CNN & State of[Documentary film]. Atlanta: CNN & State of

the Art, Inc.the Art, Inc.


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Living with Autism (Douglas Biklen, Ph.D.)