An AnnotatedAn Annotated Guide to the Guide to the

History of AutismHistory of Autism

Including a Time Line for

Your quick viewing pleasure!

An interactive presentation by: Molly E.SullivanMA in Community Education Goddard CollegeAdviser: David FrisbyFebruary 28, 2011

What is Autism today?According to the DSM (Diagnostic and Statistical Manual of Mental Disorders) Autism is: (A) qualitative impairment in social interaction, as manifested by at least two of the following: 1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction 2. failure to develop peer relationships appropriate to developmental level 3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people) 4. lack of social or emotional reciprocity

Children with autism tend to avoid looking into another person’s eyes, as indicated by the representation of eye movements and fixation (where the gaze settles) at right. Children who do not have autism tend to look at another person’s eyes and keep their gaze there, as indicated at left. Eye movements are indicated by yellow lines and parts of the face where the eye stops and fixates are shown with red circles that grow larger the longer participants gaze at a certain spot. Image courtesy of Brendon Nacewicz, University of Wisconsin-Madison (the Dana Foundation)

ControlPerson with

Autism

6

(B) qualitative impairments in communication as manifested by at least one of the following: 1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) 2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others 3. stereotyped and repetitive use of language or idiosyncratic language 4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

What is Autism today?

Picture exchange communication system PECS

Social Stories: Social thinking curriculum

Talkingwith

pictures

Teachingto initiate

socialinteractions

7

(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following: 1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus 2. apparently inflexible adherence to specific, nonfunctional routines or rituals 3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements) 4. persistent preoccupation with parts of objects

What is Autism today?

Stereotyped motormannerisms:

i.e. Hand flapping

NonfunctionalRoutines or

rituals.

Restricted patternof interest:

i.e. trains seem tobe all that exists

8

What this essentially means is...People with Autism are generally challenged by :

●Communication

●Social interactions

●Gross and fine motor tasks

●Spontaneity

And my also exhibit:

● stereotyped behaviors:i.e. Repetitive or ritualistic movement, posture or utterance

●Sensory issues

People with Autism sometimes can:

●Pay extreme attention to details

●Have intense knowledge of specific interests

●See the world through unique lenses

●Have very high levels of intelligence

Temple says:

“... if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’”-Temple Grandin Autism News Feb. 2, 2010

9

And let's rewind...●What has Autism been defined as in

the past?

●Who are some of the major players in the evolution of understanding Autism?

●How does it all fit in to our current understanding of Autism?

Let's look at the History.So we can understand

the present.

10

Eugen Bleuler (1857-1939)Hmmmm...I will use the word

Autism.“Auto” means “self” and thesepeople seem only interested

in the self.

●1910- Bleuler coins the word Autism to describe a set of behaviors that indicated a form of adult schizophrenia.

●Bleuler also coined the term schizophrenia; which translates roughly as "splitting of the mind" and was intended to describe the separation of function between personality, thinking, memory, and perception.

Quotes to note:Quotes to note:"The [...] schizophrenics who have no more contact with the outside world live in a world of their own. They have encased themselves with their desires and wishes [...]; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality with the relative and absolutepredominance of the inner life, we term autism," - Eugen Bleuler (World Psychiatry, 1(3)(Oct. 2002)

11

Leo Kanner (1894-1981)Autism is it's own thing aside from

childhood schizophrenia. It has unique characteristics that present in many ways.

●(Kanner,1943): writes an article titled Autistic Disturbances of Affective Contact which includeseleven case studies of children he presumes have Autism.

●(Kanner, 1943) notices five characteristics of what he terms “early infantile autism”:1.) The inability to relate to and to interact with people from the beginning of life.2.) The inability to communicate with others through language.3.) The obsession with maintaining sameness and resisting change.4.) The preoccupation with objects in favor of people.5.) The occasional evidence of good potential for intelligence. (p.241-250)

●Kanner helped remove Autism from being classified as a mental illness or mental retardation andhe broke it's ties to childhood schizophrenia.

Quotes to note:Quotes to note:"We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided affective contact with people, just as other children come into the world with innate physical or intellectual handicaps,"- (Leo Kanner, 1943, p 250)

8

12

Hans Asperger (1906-1980)People with symptoms of Autism have a very important place in the

world. Their ability to focus intensely on their specific interests is of use to society's progress in

Science and Art, specifically.

Quotes to note:Quotes to note:

●(Asperger,1944) writes 'Autistic Psychopathy' in Childhood; which includes 4 case studies of children who seemed to share characteristics of high verbal ability, intense interest in certain subjects, difficulty making conversation and forming friendships, and lack of empathy.(Frith, 1981)

●Asperger calls his subjects “little professors” because of their in depth knowledge on their topics of interest.

●The term “Asperger's Syndrome” is still used today for very high functioning people on theAutism Spectrum.

“Not everything that steps out of line, and thus ‘abnormal’, must necessarily be ‘inferior’. – (Hans Asperger, 1938)

13

Bruno Bettelheim (1903-1990)

Two words: Refrigerator Mothers

●(Bettleheim,1967): Wrote The Empty Fortress: Infantile Autism and the birth of the self (this publication attributed Autism in children to parents, particularlymothers, who were cold, unloving, and perhaps didn't even want their child.)

●Due in part, to this book the “refrigerator mother” theory remaineda popular explanation for Autism through the 60's and 70's.

●Bettelheim's theories have become the theories everyone loves to hate.

Quotes to note:Quotes to note:"With the very disturbed child, understanding is essential, since we all know sadly that love is not enough."-(Bruno Bettelheim, 1950)

14

Bernard Rimland (1928-2006)Wait a minute, guys. I have a sonWho has Autism. This is not about

“refrigerator parents”, I think it Might be something biological.

Quotes to note:Quotes to note:

●(Rimland,1964): Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior.In this book Rimland dispelled the “refrigerator mother” idea of Bettelheim. He hypothesized thatAutism had genetic and biological components.

●1965: Founded the ASA (The Autism Society of America)

●1967: Founded The Autism Research Institute -Since 1967, over 26,000 parents have completed surveys indicating the extent to which various treatments helped their children.

●1988: Was the “autism adviser” for the film Rain Man

●In his later career Rimland was very vocal about the contribution of mercury vaccinations to the cause of Autism. ●He also founded “Defeat Autism Now!” as a platform for top researchers to identify causes of autism and promote safe and effective treatments that the medical establishment would not investigate

“Believe in your children. Never give up on them. Autism is treatable.” -Bernard Rimland (at a DAN! conference)

15

(Yeo,Tribute to Bernard Rimland, 2006)

A. Jean Ayres (1920-1989)

Quotes to note:Quotes to note:

●(Ayers,1972): wrote: Sensory Integration and Learning Disorders

●Sensory integration (SI) therapy remains a controversial—though popular—treatment for children with Autism. It is used under the assumption that these children have problems in sensory integration to which some or all of their learning difficulties can be ascribed.

● An occupational therapist who studied and coined the term “Sensory Integration Dysfunction” which is: A neurological disorder characterized by disruption in the processing and organization of sensory information by the central nervous system, characterized by impaired sensitivity to sensory input, motor control problems, unusually high or low activity levels, and emotional instability. (medical dictionary)

I'm tellin' ya, motor impairment andsensory processing are instrumentalto understanding the Autistic brain.

“The equipment used in sensory integrative therapy is designed to entice the child into activities that provide sensations that tend to organize young human brains." -A. Jean Ayres, 1979

16

Eric Schopler (1927-2006)and

TEACCHLet these parents in! I see parentsAs collaborators in their children's

Education.

●(Schopler, 1984)Promoted the idea to teach the parents to teach their children. He found the parents could be effective co-therapists for their children.

1971: Along with Dr. Robert Reichler he founded the Division TEACCH program: a family-centered, evidence-based practice for autism, based on a theoretical conceptualization of autism, and notable for its flexible and person-centered support of individuals of all ages and skill levels. (still widely used today)

●Authored over 200 books and articles on Autism Spectrum Disorders

Quotes to note:Quotes to note:“I think it’s the parents. When they get genuinely appreciative and excited, and enthusiastic about the progress in their kid, well, that, to me, is probably as important as anything like outcome data. It’s unforgettable." - Eric Schopler

17

If these kids get many hoursOf 1 to 1 instruction they may

“get better”.

●Ole Ivar Lovaas wrote a 1987 paper, Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children- Which showed for the first time that intensive one-to-one therapy early in life could eliminate symptoms of the disorder in some cases.● One of the founders of ABA (applied behavior analysis) behavioral therapy

Ole Ivar Lovaas (1927-2010)

Quotes to note:Quotes to note:

Applied behavior analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior (Baer, Wolf & Risley, 1968; Sulzer-Azaroff & Mayer, 1991).

●Some of Lovaas' techniques are highly critiqued, but ABA has evolved a lot over time and is widely accepted as a treatment that produces results.

"If a child cannot learn in the way we teach ... we must teach in a way the child can learn." -Ole Ivar Lovaas

18

Quotes to note:Quotes to note:

Lorna Wing (1928-

●1956: Has a daughter, Susan, who is diagnosed with Autism at age 3●1962: Along with other parents of children with Autism, she starts the National Autistic Society in Great Britian.

There are 3 things we really need to belooking at when diagnosing this kids:

Interaction, communication, and imagination.

●1979: Identified the Triad of Impairments:1. Impairment of social interaction

…difficulty in relating to others 2. Impairment of social communication …poor use and understanding of language 3. Impairment of imagination …inability to play imaginatively with toys or interact socially due to lack of intuition (The triad of impairments, AWARES) ●1981: Introducted Hans Asperger's work to the English speaking world in her publication Asperger's Syndrome: A clinical account

"All of the features that characterize Asperger syndrome can be found in varying degrees in the normal population" — Lorna Wing

19

Uta Frith (1941-

Quotes to note:Quotes to note:

.

●(Frith,1989): Wrote Autism:Explaining the Enigma-This book focused greatly on the cognitive neuroscience of Autism.

●Worked extensively on “Theory of Mind” in Autism which proposes the idea that people with Autism have specific difficulties understanding other people's beliefs, plans and desires.

●Has also worked with Central Coherence Theory, a term she coined in which her hypothesis is that children with autism actually perceive details better than normal people. They see details not and have trouble with the big picture.

●Worked extensively with Simon Baron-Cohen who wrote Mindblindness: An essay on autism and Theory of Mind.

● 1981: Translated Hans Asperger's 1944 research to English for the first time

I think children with AutismLack a “Theory of Mind”, which is to

say: they have a hard timeunderstanding that others

have different thoughts, plans, and motives than they do.

“The ability to mentalize is hugely important for social interaction and in communication, and we believe it is impaired in autistic people.” -Uta Frith

20

Temple Grandin (1947-●1950: Diagnosed with Autism at 3 years old●Invented the “squeeze machine” to provide deep calming pressurethat helped her sensory needs.

●Has written 7 books, some on Autism and some on the humane treatment of animals.

●Her most recent book on Autism written in 2009: The Way I See It: A Personal Look At Autism And Aspergers she outlines a theory on the different ways the Autistic brain thinks:

●Grandin is an advocate for early intervention and an integrated treatment approach--meaning many different forms of therapy i.e speech, OT, social thinking, etc.

●2010: An HBO movie about her life was aired.●2010: Named by Time Magazine as one of the 100 most influential people in the world.

1. Visual thinking - Thinking in Pictures2. Music and Math thinking- Pattern thinking3. Verbal logic thinking-

Different. Not less.

Quotes to note:Quotes to note:“A treatment method or an educational method that will work for one child may not work for another child. The one common denominator for all of the young children is that early intervention does work, and it seems to improve the prognosis.” -Temple Grandin

21

In the past 20 years...●The research on Autism has grown exponentially.

●There are theories that are withstanding rigorous tests and may someday beproven as truth in unlocking the mystery of Autism.

●Other theories have been dis-proven.

●Many theories still remain controversial.

●Some say the rates of Autism have gone up, and some say we have justexpanded the diagnostic criteria.

●There has been an increase in “specialty schools” and programs devoted specifically to children with Autism

●A neurodiversity movement has developed-autism is not a disability but is a difference

“Retrospective consideration of the lives of exceptional human beings offers credible evidence that the autistic distinction has persisted throughout history, and has been a valuable element of human culture... Autism is as much a part of humanity as is the capacity to dream.” -Kathleen Seidel neurodiversity.com

A LOT has happenedIn Autism

22

Where do we go from here?

The Educational

Temple says:

We have got to work on keeping these children engaged with the world.-Temple Grandin

The Scientific

Autism is currently being approached on two fronts, let's generalize them as:

In the best cases, I believe there should be overlap.

Progress (in Autism Research) will require geneticists, cell biologists, and cognitive neuroscientists to talk to one another, despite the fact that by and large they speak different languages. -Alan Packer

23

Introspection Section●For at least the past 10 years, the history of Autism is being written everyday in schools and in science labs, it becomes hard to keep up, and even harder to sort through what is theory, whatis science, and what is actually working in the lives of children, parents and educators dealing with Autism Spectrum Disorders.

●If I could have a say in how I might contribute to this varied history of a complex matter it would be simple, in later testimonials of the children I teach, I hope they might express that I did good by them. I hope they feel valued in our interactions and loved, by me, for exactly who they are. I hope they feel more equipped to feel unique and of worth in a world that sees them as different.

"A skilled and imaginative teacher prepared to enjoy and be challenged by the child seems repeatedly to have been a deciding factor in the success and educational placement of high-functioning, autistic children" (Newson, Dawson, & Everard, 1982)

I hope you know thatI think you are AWESOME!

●Oh, and I hope to create a program that better serves their unique interests and provides them a holistic place to learn, have fun and build community.

24