2080 S. Undermountain Road, Sheffield, MA 01257 1-877-SON-RISE (413)-229-2100
www.autismtreatment.com
•Severe autism
My Diagnosis
• Tested I.Q. of less than 30
• Mute/non-verbal
• No eye contact
• Moved away from any physical contact
• Spent my days performing repetitive behaviors: Spinning plates (and other objects) Rocking back and forth Flapping my hands Moving my fingers in front of my face
•My autism was an irreversible, lifelong condition
My Prognosis
• I would occupy my own separate world for the rest of my life
• Learn to speak• Prefer people over objects• Learn to read or write• Go to a typical school• Laugh at a joke• Go on a date• Have a circle of friends• Drive a car• Have a career• Live on my own• Recover and live a “normal” life
• I would never:
Eventual institutionalization
The Recommendation
In My Own World
•Defied the doomsday prognoses
• Developed their own home-based, child-centered program:
• Worked with me for over 3 years
What Did My Parents Do?
The Son-Rise Program®
The First Son-Rise Program
• Full recovery from autism
The Results
• No trace whatsoever of my former condition
• Went on to live a “typical” life
• Graduated from Brown University with a degree in Biomedical Ethics
Our story was recounted in an NBC
TV movie seen by over 300 million people
worldwide.
My father, Barry Neil Kaufman, wrote the book, Son-Rise
(recently expanded as Son-Rise: The Miracle Continues) documenting our story.
After My Recovery
The Autism Treatment Center of America
A division of The Option Institute, a non-profit, charitable organization Located in Sheffield, Massachusetts
TM
• Our methodology: The Son-Rise Program®
The Autism Treatment Center of America
A division of The Option Institute, a non-profit, charitable organization Located in Sheffield, Massachusetts
TM
• Our children: Challenged by autism, autism spectrum disorders, Pervasive Developmental Disorder, Asperger’s Syndrome, and other developmental difficulties.
• Our program: A system of treatment and education designed to help families and caregivers enable their children to dramatically improve in all areas of learning, development, communication, and skill acquisition.
Professional TRAINING and CERTIFICATION
Child Facilitator CertificationTeaches students to work directly
with children and adults with varying diagnoses
Teacher CertificationTrains students to teach all
aspects of The Son-Rise Program® to parents and
professionals
Facilitate interaction
Jump-start speech and language
development
Deal effectively with tantrums and repetitive “stimming” behaviors
WE TEACH PARENTS AND PROFESSIONALS TO:WE TEACH PARENTS AND PROFESSIONALS TO:
Recruit and train volunteers
Create a special work/playroom for optimal learning
Apply our practical strategies to everyday “real world” situations Create and sustain an attitude of hope and optimism about your
child
The Son-Rise Program START-UPA week-long training program for parents and
professionals
New Coding System Results for Child 1 Applying the new coding protocol illuminated other changes.
Two outcome measures were used. Presented here are data derived from the ADOS (Lord et al, 2002) only. This is a semi-structured series of highly standardised opportunities for interaction designed to elicit social gestures from children. The current published coding protocol is not designed to support the use of the ADOS as an outcome measure. Thus sessions were video recorded and later subjected to an additional coding protocol measuring the child’s social and communicative behaviours to allow for more fine-grained analysis than the diagnostic coding system.
Method16 children with autism whose parents had already chosen to use the Son-Rise Program (and opted to travel to the USA for intensive training) were selected. Children were age 7 or younger, did not have additional diagnoses and were assessed as Module 1 on the Autism Diagnostic Observation Schedule (ADOS) (the lowest functioning level). A mixed between and within-subjects design was employed as shown in Figure 1.
Figure 1. Experimental Design
New Coding System Results for Child 3Child 3 used more varied and frequent types of
communication than Child 1 and so provided greater scope for more in-depth analysis.
Function of Communicative ActsAll communicative acts used by the child were coded as
being one of four possible functions (from Prizant et al, 1993):
Responsive vs. Initiated Communicative ActsWhen the above data were further separated based on
whether the communicative act was either in response to an adult or was spontaneously initiated by the child we see the following:
Interventions for children with Autism:Investigating the Son-Rise Program.
Kat Houghton, Charlie Lewis (Lancaster University, UK) and Cynthia Thompson (Northwestern University, USA)
Background The Son-Rise Program is an autism intervention used in the UK and the US that, in spite of abundant anecdotal data attesting to its efficacy, has not been tested scientifically. Although created without exploiting a specific theoretical model, the program is consistent with “coactive” theories of autism. The social-orienting model of autism (Mundy, 1995) assumes a disturbance in the predilection to spontaneously orient to (and process) social information. This lack of bias to social information impacts how an infant participates in the social environment and subsequent social learning and understanding, including the ability to develop skills of joint attention. Elevated measures of social-orienting and joint attention have been seen to relate to increased language acquisition (Dawson, et al, 2004), social and cognitive outcomes (Sigman & Ruskin, 1999) and processing of social-affective non-verbal information (Diassanyake, Sigman & Kassari, 1996). The Son-Rise Program aims to remediate autism by directly increasing a child’s preference for social engagement.
HypothesisFollowing this theory it was hypothesised that, following an intensive period of Son-Rise Program intervention, children with autism will show an increased preference for social orienting (and possibly joint attention).
To fund one of our 3 studies, e-mail: [email protected]
DiscussionThese preliminary results suggest that the Son-Rise
Program intervention, as hypothesised, leads to an increase in social orienting and joint attention skills in children with autism. Continued analysis is underway.
ResultsPresented here are the preliminary results from two children only.
ADOS as an Outcome Measure using published Coding System and Diagnostic Algorithms for two study participants.
0
7
12
Child 3
Child 3 showed a positive change in diagnostic classification when sessions were coded with the ADOS coding system. Time 1 (pre-intervention) = 13Time 3 (post-intervention) = 9
Child 1 changed from a score of 20 to19.
Time 1 Time 35-day BASELINE PHASE
Typically developing
ASD Classification
Autism Classification
Using the new coding system an increase in social behaviors can be seen for Child 1. This child used no other types of communication in either test.Child 1
Function Description
Behaviour Regulation (br)
Adult used as a tool to meet child’s demands
Social Interaction (si)
To maintain, or participate in a social routine
Joint Attention (ja)
To share attention about a object or event
Unclear (un) Appears to be a communication but purpose is unclear
Child 3 showed an increase in use of communicative acts for the purposes of behavior regulation and joint attention, and a decrease in use of communicative acts for social interaction or with an unclear purpose.
This shows that the observed increase in communicative acts for the purpose of behaviour regulation can be attributed to events where the child is responding to an adult.
The most obvious changes in initiated communicative acts are 1) a decrease in unclear acts, and 2) an increase in initiations of joint attention (2 increased to 16)ADOS
ADI-RVineland
Other Measures
ADOSOther
Measures
ADOSOther
Measures
Family arrives at intervention center
Family stays at intervention center but no intervention is provided
DAY 1 DAY 5 DAY 11
Family stays at intervention center and Son-Rise Program intervention is provided
Treatment Group
Control Group
ADOSADI-RVinelandOther Measures
ADOSOther Measures
Family stays at home, no professional intervention is provided. They travel to local university for the assessments.
BASELINE PHASE INTERVENTION PHASE
Time 2 5-day INTERVENTION PHASE
Child 1
and then we show them the way out.
The Son-Rise Program is based upon this simple idea:
The children show us the way
in,
JOINING
Participating in your child's repetitive &
exclusive behaviors
An important Son-Rise Program difference:
The focus of more traditional programs = change behavior
The focus of The Son-Rise Program = create relationship
Rather than forcing our children to conform to a world that they don’t understand,
we enter their world first.
• Repetitive
• Exclusive
• Useful to each child
• Can be curative or palliative
• The key which unlocks the door to your child’s world!
The “ism”
University of Washington 1984, 1990Geraldine Dawson (et al)
Journal of Abnormal Child PsychologyDevelopment and Child Psychopathology
Mothers imitated child for 20 minutes/day for 2 weeks Significant increases in duration of gaze at mothers’ faces and creative toy play
When facilitator engaged in imitative play with children More socially responsive, more eye contact, and played with toys in a less
perseveration manner__________________________________________________________________________
University of Miami 2001Tiffany Field (et al)
Autism
2 groups of children for 3 sessions: 1 group imitated, 1 group adults tried to play with them
2nd session: Imitation group More time than the other children looking at adult, vocalizing to adult, smiling at adult, and engaging in reciprocal play.
3rd session: Imitation group More time than the other children sitting closer to adult and touching the adult.
Backed By Published Studies
Customizing the presentation of curriculum to match your child’s highest areas of interest
Facilitating SKILL ACQUISITION By Capitalizing On Your Child’s Own
MOTIVATION
• On the one hand widely acknowledged (w/typical students, athletes, etc.)
• On the other Rarely, if ever, put into practice with children on the autism spectrum in a consistent manner
• Typical academic settings: the teacher decides what and how the class will learn The message: learn on my terms, not yours.
• However: this runs counter to the idea of creating rapport and building on motivation
• Often: the mode of learning and the child’s interests are not matched
Motivation is the Single Largest Factor for Growth
For children with autism spectrum disorders, traditional learning modalities
will rarely be motivating.
• Therefore customize the presentation of curriculum to match the child’s highest areas of motivation.
• How: locate the child’s primary areas of interest first, and then decide how to teach them.
• Thus: we use learning skills and interests our child already has instead of trying to “work against the grain”
Spontaneous, self-generated communication and action (instead of “programmed”, “robotic” responses)
Generalization of skills (instead of requiring a prompt or reward)
The Added Bonus
University of California 1998Robert Koegel (et al)
Seminars in Speech and Language
Game based upon child obsessional theme Increase in social interaction…
And generalized to non-obsessional themed games________________________________________________________
University of California 1987Robert Koegel (et al)
Journal of Applied Behavior Analysis
Activities chosen by adult Child more socially avoidantChild-preferred activities Child less socially avoidant
Backed By Published Studies
Teaching SOCIALIZATION Through INTERACTIVE PLAY
Utilizing dynamic relationship-building
techniques to accomplish developmental goals
Autistic Child / Adult
Eye Contact: Duration; Frequency; Quality
Communication: Vocabulary; Sentence Length; etc.
Flexibility: Rigidity; Activity Variations; Spontaneity; etc.
Interactive Attention Span: Duration; Frequency; etc.
Cognitive: Math; Reading; Reasoning; etc.
Self Help: Toileting; Feeding; Dressing; etc.
Gross Motor: Limb mobility & Coordination; Balance; etc.
Fine Motor: Hand/Eye Coordination; Sensory Perception; etc.
Friendship SkillsBasic IntermediateAdvanced
Conversation SkillsMechanicsThe Art of
Socially Adept
Child / Adult
SOCIALIZATION The Four Fundamentals
The Son-Rise Program® Developmental Model
2 Key Components of Your Child’s Learning Process:
Socialization goals BEFORE
academic goals
Prioritize interaction over
the goal
Case Western University in Ohio 1986-2006Gerald Mahoney (et al)
Topics in Early Childhood Special Education
Relationship-focused, responsive style of interaction where the child was given control precipitated increases in cognitive functioning, communication, and socio-emotional
functioning
Backed By Published Studies
A Non-Judgmental & Optimistic ATTITUDE is the CRITICAL ELEMENT
Not judging where our children are today
while believing they can go
anywhere tomorrow
“Could we kiss the ground that the others had cursed?” –
Barry Neil Kaufman, Son-Rise: The Miracle Continues
Discomfort + judgment = more withdrawal
Comfort + acceptance = more interaction
A non-judgmental, optimistic attitude interaction magnet.
The Key: Make you and your world attractive to your children.
Case Western University in Ohio 2005Gerald Mahoney (et al)
Developmental and Behavioral Pediatrics
The facilitator’s (parent, other) having a visible affect of acceptance, enjoyment, expressiveness, and warmth Significantly related to increases in the child’s language, social competence, joint attention, and self-regulation.
Backed By Published Studies
Using The Son-Rise ProgramTo Enhance Biomedical Intervention
And Promote Sustained Physiological Repair
•Dr. Scott Faber: Found chronically high stress hormones (cortisol, adrenaline)•In perpetual “fight or flight” survival mode – NOT in Recovery Mode•Cannot engage in Sustained Physiological Repair (SPR)
•Supplementation (zinc, magnesium, etc.), probiotic treatment, anti-fungal treatment, dietary
intervention, chelation, hyperbaric oxygen therapy, secretin, anti-viral and anti-bacterial medications, the
Listening Program, and other sensory integration therapies…•Child’s body must absorb supplements, rebuild the gut, eliminate toxins, build the immune
system, etc.•The key: Shift your child from “fight or flight” survival mode to Recovery Mode
•Use The Son-Rise Program principles to: build trust, increase feelings of safety and control, reduce
over-stimulation, and increase satisfying social interaction and communication•Dr. Faber: Found that joining, giving control, creating an environment free from over-
stimulation, and providing “emotionally-attuned intervention” stress hormones dropped into normal
ranges
•Immune, digestive, neurological, and nervous system enters the Recovery Mode•Biomedical interventions implemented with our children’s cooperation instead of
resistance•Also: Isms are a coping mechanism
• Entering our children’s world and building trust enter social and emotional Recovery Mode opens the doorway to communication and socialization – with their permission and motivation
The Recovery Mode
Facilitate interaction
Jump-start speech and language
development
Deal effectively with tantrums and repetitive “stimming” behaviors
WE TEACH PARENTS AND PROFESSIONALS TO:WE TEACH PARENTS AND PROFESSIONALS TO:
Recruit and train volunteers
Create a special work/playroom for optimal learning
Apply our practical strategies to everyday “real world” situations Create and sustain an attitude of hope and optimism about your
child
The Son-Rise Program START-UPA week-long training program for parents and
professionals
The Son-Rise Program Sequence
• Maximum Impact: Take your program to the next level
• New Frontiers: Hone your program goals and curriculum
Other Services• Outreaches – with one of our Family Trainers in your home
• Video feedback – for you and others working with your child
• Consultations (in person or by phone) – to answer any questions and help you to overcome challenges
The First Step: Your Initial Call
• Talk to Kristin: Book phone appointment (no charge) with a Family Counselor
• Ask any questions you have
• Find out if the Start-Up is a good fit
• Find out how to apply for financial aid
Take-Home Resource
Provided for You Free of Charge
Want the 2-hour complete version of this lecture on
DVD?
• Buy it at our booth – from Kristin
• Pay conference price of $30 (includes tax)
Hope is the spark that ignites the human spirit!
Hope leads to action.
My recovery from autism is the product of hope.
There is no false hope, only false pessimism.
You don’t ever have to apologize for hoping for your child.
The Myth of “False” Hope
There is no “false” hope! Let’s give our children a chance!
2080 S. Undermountain Road, Sheffield, MA 012571-877-SON-RISE (413)-229-2100
www.autismtreatment.com