Breakthrough Strategies for Autism Spectrum Disorder, The Son-Rise Program
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2080 S. Undermountain Road, Sheffield, MA 01257
www.au ti smtre atmen t.co m
1-877-SON- RI SE (4 13)- 229-2100
My Dia gno si s
•Severe autism • 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 P ro gnos is
•My autism was an irreversible, lifelong condition • I would occupy my own separate world for the rest of my life
• I would never: • 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
The R ecommendat io n
Eventual institutionalization
In My Ow n Wo rld
What Di d My Pa ren ts Do ?
•Defied the doomsday prognoses • Developed their own home-based, child-centered program:
The S on-Ri se P rogr am ®
• Worked with me for over 3 years
Th e Fi rst Son-R is e P ro gram
The R esult s
• Full recovery from autism • No trace whatsoever of my former condition • Went on to live a “typical” life • Graduated from Brown University with a degree in Biomedical Ethics
Aft er My Rec overy
My father, Barry Neil Kaufman, wrote the book, Son -R ise (recently expanded as Son -Rise : Th e Miracle Con ti nu es ) documenting our story.
Our story was recounted in an NBC TV movie seen by over 300 million people worldwide.
The Aut is m Tr eatm ent Cent er of Am eric a
A division of The Option Institute, a non-profit, charitable organization Located in Sheffield, Massachusetts
TM
The Aut is m Tr eatm ent Cent er of Am eric a
A division of The Option Institute, a non-profit, charitable organization Located in Sheffield, Massachusetts
TM
• Our methodology: The Son-Rise Program® • 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.
Professi ona l T RA INI NG and C ERTIFICATIO
Ch ild F ac ilitator Teaches students to Certific ation with work directly children and adults with varying diagnoses
N
Tea che r Cer tific ation Trains students to teach all aspects of The Son-Rise Program® to parents and professionals
Th e S on-Ri se Pro gr am STAR T-U P
A we ek- long tra inin g prog ram f or paren ts and pro fe ssi onals
WE TEACH PA REN TS AND P RO FES SI ON AL S TO:
Facilitate interaction Jump-start speech and language development Deal effectively with tantrums and repetitive “stimming” behaviors
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
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 socialorienting 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. Hypothesis Following 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). Method 16 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
Family arrives at intervention center Family stays at intervention center but no intervention is provided Family stays at intervention center and Son-Rise Program intervention is provided DAY 5 BASELINE PHASE INTERVENTION PHASE DAY 11
Two outcome measures were used. Presented here are data derived from the ADOS (Lord et al, 2002) only. This is a semistructured 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.
New Coding System Results for Child 3 Child 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 Acts All communicative acts used by the child were coded as being one of four possible functions (from Prizant et al, 1993):
Function Behaviour Regulation (br) Social Interaction (si) Description
Adult used as a tool to meet child’s demands
To maintain, or participate in a social routine
Results Presented 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.
Joint Attention (ja) Unclear (un)
To share attention about a object or event
Appears to be a communication but purpose is unclear
0 7
Typically developing ASD Classification
Autism Classification
Child 1
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 Responsive vs. Initiated Communicative Acts for social interaction or with an unclear purpose. When 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:
Child 3
12
Time 1
5-day BASELINE PHASE
Time 2
5-day INTERVENTION PHASE
Time 3
Child 3 showed a positive change in diagnostic classification when sessions were coded with the ADOS coding system. Time 1 (pre-intervention) = 13 Time 3 (post-intervention) = 9 Child 1 changed from a score of 20 to19. New Coding System Results for Child 1 Applying the new coding protocol illuminated other changes.
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) Discussion These 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. To fund one of our 3 studies, e-mail: KatHoughton@taconic.net
Treatment DAY 1 Group ADOS
ADI-R Vineland Other Measures
ADOS Other Measures
ADOS Other Measures
Control ADI-R Group Vineland
ADOS
Family stays at home, no professional intervention is provided. They travel to local university for the assessments.
Other Measures
ADOS Other Measures
Child 1
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.
The Son-Rise Program is based upon this simple idea:
The children show us the way in, and then we show them the way out.
JOI NING
Pa rtic ipa tin g in you r c hild' s rep etitive & exc lus ive beh av iors
An imp orta nt Son-Ri se P rog ra m di fference :
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.
The “ is m”
• Repetitive • Exclusive
• Useful to each child • Can be curative or palliative • The key which unlocks the door to your child’s world!
Backed B y P ub li shed St ud ies
University of Washington 1984, 1990 Geraldine Dawson (et al) Journal of Abnormal Child Psychology Development 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 2001 Tiffany 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.
Facil it ating SKILL ACQ UISIT IO N By Ca pi ta liz ing O n Your Chi ld ’s O wn MO TIVA TIO N
Custom izing th e p rese nt ation of c urric ulum to ma tc h your child ’s hig he st a rea s of inte rest
Motiva ti on i s th e Si ngl e La rg est Factor f or Gr owth
• 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
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”
The Ad ded Bonu s
Spontaneous, self-generated communication and action
(instead of “programmed”, “robotic” responses)
(instead of requiring a prompt or reward)
Generalization of skills
Backed B y P ub li shed St ud ies
University of California 1998 Robert 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 1987 Robert Koegel (et al) Journal of Applied Behavior Analysis Activities chosen by adult Child more socially avoidant Child-preferred activities Child less socially avoidant
Teachi ng S OCI AL IZATIO N Thr ough I NTE RACT IVE P LAY
Utilizin g dyn am ic re lations hip -bu ildin g tec hn iqu es to a ccomplis h de velop men tal goals
The Son-Rise Program Developmental Model
®
Self Help: Toileting; Feeding; Dressing; etc. Cognitive: Math; Reading; Reasoning; etc.
SOCIALIZATION The Four Fundamentals
Autistic
Child / Adult
Eye Contact: Duration; Frequency; Quality Communication: Vocabulary; Sentence Length; etc. Interactive Attention Span: Duration; Frequency; etc. Flexibility: Rigidity; Activity Variations; Spontaneity; etc.
Friendship Skills
Basic Intermediate Advanced
Socially Adept
Child / Adult
Conversation Skills
Mechanics The Art of
Gross Motor: Limb mobility & Coordination; Balance; etc.
Fine Motor: Hand/Eye Coordination; Sensory Perception; etc.
2 K ey Co mp on en ts o f Yo ur Chi ld’ s Le ar ning Proce ss:
Socialization goals BEFORE academic goals
Pri oriti ze inte rac tio n over th e go al
Backed B y P ub li shed St ud ies
Case Western University in Ohio 1986-2006 Gerald 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
A Non-J udg me nta l & Opt imi sti c AT TIT UDE is th e CR IT IC AL EL EMENT
Not ju dging where our c hild ren are today wh ile be lievin g the y ca n go an yw here tomorrow
Barr y Neil Kauf man , Son -Rise : The Mirac le Cont inu es
“Coul d we kis s the groun d tha t t he ot hers ha d curs ed?” –
Discomfort + judgment = more withdrawal Comfort + acceptance = more interaction
A non-judgmental, optimistic attitude inter act ion ma gne t . The Key: Make you and your world attractive to your children.
Backed B y P ub li shed St ud ies
Case Western University in Ohio 2005 Gerald 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.
The R ecove ry Mod e
Using The So n- Ris e Prog ram To Enh an ce Biome dic al In terv ent ion An d Promot e Su staine d Physiolog ical Re pair
•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
Th e S on-Ri se Pro gr am STAR T-U P
A we ek- long tra inin g prog ram f or paren ts and pro fe ssi onals
WE TEACH PA REN TS AND P RO FES SI ON AL S TO:
Facilitate interaction Jump-start speech and language development Deal effectively with tantrums and repetitive “stimming” behaviors
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-R is e Pr ogr am Se que nc e
• Maximum Impact:
Take your program to the next level
• New Frontiers: Hone your program goals and curriculum
Other Se rvi ces
• Outre ach es – with one of our Family Trainers in your home • Vi de o feed ba ck – for you and others working with your child • Co ns ul tat ions (in person or by phone) – to answer any questions and help you to overcome challenges
The Fi rst S tep: Y our I ni ti al Ca ll
• 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 Re source Provid ed f or Y ou Fr ee of Ch arge
Want the 2- hour com pl ete vers io n of thi s lecture on DVD ?
• Buy it at our booth – from Kristin • Pay conference price of $30 (includes tax)
The Myt h of “Fal se” Hope
Hope is the spark that ignites the human spirit!
Hope leads to act ion . 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 re is no “f al se” ho pe ! Let ’s gi ve our child ren a ch an ce!
2080 S. Undermountain Road, Sheffield, MA 01257
www.au ti smtre atmen t.co m
1-877-SON- RI SE (413)- 229-2100