Evidence Based Programming for Infants and Toddlers with Down Syndrome

Sara M. Bauer, MA, MPhil, BCBA

Learning Processes and Behavior Analysis ProgramQueens College and the Graduate Center, City University of New

York

Overview•Evidence Based Programming:

▫Behavior analytic (ABA) Interventions to increase critical skills Communication Motor Cognition

What is ABA?• A = Applied B = Behavior A = Analysis

• Behavior analysis refers to the scientific study of behavior.

• ABA is often considered the therapeutic application of the principles of learning and behavior analysis.

• ABA uses procedures derived from the principles of learning to address problems of social significance:▫Academic skills▫Social skills▫Communication skills▫Adaptive living skills

Retrieved from http://www.centerforautism.com/aba-therapy.aspx

The ABC’s of ABA

•A = Antecedent B = Behavior C = Consequence

•ABA practitioners primarily focus on the variables surrounding a behavior, including the antecedents and consequences.▫ determine the function of a behavior

• If the function of a behavior is known, one can then intervene to either increase the behavior or decrease it.

ABA with Learners with Autism Spectrum Disorders

•ABA is an evidence based method that has had much success with learners with Autism spectrum disorders (ASD) (Peters-Scheffer, Didden, Korzilius, & Sturmey, 2011).

•In fact, ABA interventions are most often used with learners with ASD but are rarely provided to learners with Down syndrome or other disorders. ▫WHY NOT?!

ABA with Infants with Down Syndrome?-Absolutely!

•If we can demonstrate the successful implementation of behavior analytic (ABA) interventions to address areas of impairment in children with Down syndrome, we have proof that ABA works with children with Down syndrome too! ▫validating and disseminating this empirical

approach •How do we use ABA with infants and

toddlers with Down syndrome?

Early Development in Down Syndrome

•Much descriptive research on early development in Down syndrome (Fidler, 2005)▫Cognitive functioning▫Communication skills▫Motor functioning

•Patterns in early development directed researchers to discuss a Down syndrome behavioral phenotype

Down Syndrome Behavioral Phenotype

Strengths Weaknesses

Social Behaviors

Some areas of Motor

Development

Visual-imitation

Early Communication

Skills

Receptive Language

Areas of Cognitive

Development

•Pattern of syndrome specific strengths and weaknesses that characterize the disorder

Critical Areas of Weakness in Infant Development

CommunicationMotor

Cognition

Early work•Examples:

▫Hansen’s work in the late 1970s early 1980s.▫Poulson (1988) used operant conditioning to

enhance communication in young children with Down syndrome. Identified procedures and demonstrated positive outcomes.

▫Yoder and colleagues work using naturalistic language interventions.

Considering the Behavioral Phenotype

•Growing emphasis on development of interventions to:▫specifically target areas of characteristic

weakness by building upon characteristic strengths (Hodapp & Fidler, 1999; Fidler, 2005)

•Develop interventions that can be applied at the youngest of ages to address skill areas that may prevent further impairment

Down Syndrome Behavioral Phenotype and

Behavior Analytic Interventions

•Can we use what we know about the Down syndrome behavioral phenotype to inform the development of behavior analytic interventions?

•Such an approach holds promise:▫We can address the most critical areas of need▫We can intervene in a preventative manner▫Such early intervention may minimize

collateral negative outcomes associated with early impairments.

Intervention Applied to Critical Areas

•Communication▫Requesting▫Verbal imitation▫Social Questions▫Spontaneous Language

•Motor Skill Development & Cognition▫Exploratory motor (EM) skills

Requesting•Impaired in infants with Down syndrome compared to

typically developing infants (Mundy, Kasari, Sigman, & Ruskin,1995) which in turn decreases opportunities to interact and use language• Essential to complex forms of communication and cognitive

development (Fidler et al., 2005; Mundy et al., 1995)▫ Related to problem solving skills (Fidler et al., 2005), which

are also impaired in children with Down syndrome (Pitcairn & Wishart, 1994). In problem solving, a child is faced with a situation in which

there is an obstacle to accessing reinforcement. He/she then engages in behavior to alter the situation (Bijou, 1995).

• Requesting impairments in 2 types of situations:▫ Social situations▫ Help situations (instrumental requests)

Requesting• Feeley et al. (2011) and Bauer and Jones

(submitted):▫ Infants with Down syndrome were taught increasingly

sophisticated early requesting skills across social and instrumental requesting situations: gaze shifting gaze shifting paired with vocalization gaze shift and verbal approximation of a word to request

• Intervention included multiple opportunities, prompting, and high rates of social reinforcement

• Investigated collateral changes in problem solving skills

Requesting

• Feeley, Jones, Blackburn, and Bauer (2011) and Bauer and Jones (submitted)

Collateral Changes – Problem Solving• Collateral changes in problem solving were examined

with an object retrieval reaching task similar to the one used by Fidler et al. (2005)

• Administered Pre-and post intervention to look for changes in performance

• Procedure:▫ 30 x 30 cm cloth was placed flat on a table,

approximately 5 cm from the front edge and at the toddler's midline.

▫ A small toy was set it down on the cloth, out of the toddler’s reach.

▫ In order to access the toy, the child had to problem solve by pulling the cloth toward him/her to retrieve the toy.

Problem Solving ResultsSimon Johnny

Pre Post Pre Post

Percentage of Correct Responses

42% 77% 7% 100%

Promising results suggesting a relationship between learning to request and learning to problem solve…but warrants further investigation: 1. Compare to typically developing toddlers 2. Compare to toddlers with Down syndrome who did not undergo intervention 3. Investigate other forms of problem solving

Verbal Imitation

• Impaired in infants with Down syndrome (Mahoney, Glover, & Finger, 1981; Rondal, Lambert, & Sohier, 1981)

• Essential to intelligibility, articulation and expressive language▫ Poor verbal imitation responses may negatively affect:

the extent to which words enter a toddler’s verbal repertoire (Feeley & Jones, 2006)

the clear articulation of sounds that are intelligible to others (Gordon-Brannan & Hodson, 2000; Rasilo, Räsänen, & Laine, 2013).

▫ A verbal imitation repertoire can be important during intervention to improve both intelligibility/articulation and introduce new words and more complex verbal skills to a learner (Lovaas, 1977).

Verbal Imitation - Procedure

•Parents identify sounds for intervention and for generalization

•During intervention, interventionist says, “Say, ‘[sound] and provides prompt (physical, exaggerated, time delay) and social reinforcement for correct responses or error correction procedure for incorrect responses.

Verbal Imitation

•Feeley, Jones, Blackburn, and Bauer (2011) and Bauer and Jones (submitted)

Percent C

orrect

0

20

40

60

80

100

Baseline Intervention

0

20

40

60

80

100

Sessions

0 10 20 30 40 50 60 70 80 90 100 110 120

0

20

40

60

80

100

FP PP TD

Generalization Sounds

Sessions

0 10 20 30 40 50 60 70 80 90 100 110 120

Num

ber c

orrect

0

1

2

"ba"

"la"

"da"

"na"

*

*

*

Follow Up

"ah"

"ada"

"ma"

Collateral Changes - Intelligibility

• Intelligibility = the extent to which a listener receives the child’s communication. ▫Intelligibility is affected by factors such as

articulation (Yorkston, Strand, & Kennedy, 1996).

• Intelligibility of sounds taught in verbal imitation intervention were examined by a naïve listener who recorded the sounds she heard each participant making from video recordings▫the first author trained the naïve listener to

write down the sounds heard using written instructions, an articulation sound spelling sheet, modeling, rehearsal, and feedback.

Intelligibility Results

Simon Johnny Lucy Jordan Tyler

Percentage of

Sounds Coded as Matching

the Target Sound

89% 100% 76% 100% 84%

Promising results that set the stage for further investigation of the implications of verbal imitation interventions on related areas of expressive language.

Imitation is Important for Development of Critical Skills

•Using verbal imitation intervention to address intelligibility/articulation deficit and more sophisticated expressive language▫Answering and Asking Questions▫Spontaneous Language▫Vocabulary expansion▫Mean Length Utterance

Bauer, Jones, and Feeley (2013)• Participants

▫ Zach, 3 year old boy with Down syndrome▫ Johnny, 2 year old boy with Down syndrome

• Design▫ multiple baseline probe design▫ 3 age appropriate questions (Zach):

“What’s your Daddy’s name?”, “Where do you live?”, and “What’s your Mommy’s name?”

Corresponding responses: “Mark” ,“Farmingville”, and “Denise”

▫ 3 age appropriate questions (Johnny): “What do you like to drink?”, “What do you like to eat?”,

“How are you?” Corresponding responses: “Juice”, “Fish”, and “Good”

0

20

40

60

80

100

Percentage of Independent R

esponses to Questions

0

20

40

60

80

100

Sessions

0 2 4 6 8 10 12 14 16 18 20 22

0

20

40

60

80

100

What's your Mommy's name?Stacey

Where do you live?"Farmingville"

What's your Daddy's name?"Mark"

Baseline Intervention Maintenance

Mastery

Mastery

Mastery

2

1

0

2

1

0

2

1

0

Nu

mb

er

of C

orr

ect

Ma

inte

na

nce

Re

sp

on

se

s

Generalization

What do you like to drink?

"Juice"0

20

40

60

80

100

What do you like to eat?

"Fish"

Per

cent

age

of C

orre

ct R

espo

nses

0

20

40

60

80

100

How are you?

"Good"

Sessions

0 5 10 15 20 25 30 35 40 45 50

0

20

40

60

80

100

Baseline Intervention Maintenance

FullPrompt

PartialPrompt

Time Delay

Num

ber of Correct M

aintenance Responses

-- 2

-- 1

-- 0

-- 2

-- 0

-- 0

-- 1

-- 1

-- 2

Generalization

Mastery

Mastery

Mastery

FullPrompt

Time Delay

Spontaneous Language

• Teaching Spontaneous Responses to a Young Child with Down syndrome Feeley and Jones, (2008)

Other Critical Skill Areas•Down syndrome Behavioral phenotype

includes other areas of weakness for which we could take a similar intervention approach ▫Motor▫Cognition

Exploratory Motor (EM) Skills

•Exploratory Motor (EM) behavior is another area of weakness in infants with Down syndrome

•Bradley-Johnson, Friedrich, and Wyrembelski (1981) define EM behavior as any behavior in which infants engage while manipulating an object in their hands:

Reaching and grasping Holding and visually examining Shaking, dropping and banging

Importance of EM Behaviors •May be a behavioral cusp or pivotal skill

(like verbal imitation and requesting)•Related to other areas of development

such as cognitive development and other motor skills

•Increased number of learning opportunities

EM Impairments in Down Syndrome

•Compared to typically developing infants, infants with Down syndrome demonstrate

Significantly fewer EM behaviors early in life Shorter durations of EM behaviors

•EM impairments primarily attributed to motor difficulty

•In EM situations, infants with Down syndrome ▫attend more to caregiver than to objects▫may show more escape behavior

EM Intervention• As with many areas of weakness in children with

Down syndrome, there are few empirically demonstrated interventions to address EM behaviors

• In tailoring intervention, must consider:▫ low muscle tone▫ increased value of social consequences ▫ increased escape motivated behavior and engagement

in social behavior to escape• Alter the contingencies for engaging and not

engaging in EM behaviors so that social interaction between an infant and his/her caregivers is provided as a reinforcer only for increased time spent engaging independently with a toy

So What Does this Intervention Look Like?

•Participants, Setting, and Interventionists▫ Three infants (5-9 months of age) with

Down syndrome who demonstrate a lack of reaching, grasping, and EM behavior

▫Baseline, intervention, and generalization sessions will occur in each infant’s home.

▫ The infant’s primary caregiver(s), home based early intervention service providers, and the investigator will serve as interventionists.

EM Intervention• Dependent Measures

▫Three EM behaviors will be measured: Reach-Grasp response = infant extending his or her

arm(s) to touch a toy simultaneously with his thumb and at least one other finger of the same hand.

Visually Examine a Toy in Hand = bringing the toy within 2.5 – 12.5 centimeters of the eyes with infant’s eyes directed to the toy.

Shaking/Banging will be examined together. Shaking consists of holding a toy in one or both hands and

moving it back or forth in the air at least one time. Banging consists of holding a toy in one or both hands and

bringing it into contact with a surface (i.e., table top, floor, etc.).

EM Intervention• Typically developing comparison data

▫ The criterion for each response will be determined based upon observations of typically developing infants.

• Collateral changes▫ Related changes in motor and cognitive

development will be assessed via the Bayley Scales of Infant and Toddler Development (Third Edition) and the Alberta Infant Motor Scale assessments administered pre and post intervention.

▫Also, caregivers will complete a questionnaire to assess social validity.

EM Intervention• Materials

▫ 30 small, lightweight (i.e., not exceeding 113 grams), noisemaking toys that are typically used by young infants between 0-6 months of age will be identified.

▫A high chair, infant play mat, infant bouncy seat, and other infant support materials will be used

• Design▫To examine the effects of repeated opportunities,

specific prompts, and high rates of social reinforcement on reaching, grasping, and EM behavior, a multiple baseline probe design across three EM responses will be conducted with probes for generalization across toys, partners, and responses.

EM Intervention• Procedure

▫ During baseline and intervention, the infant will be seated in a highchair or infant seat with a tray attached or next to a table. The interventionist will sit across from the infant and place the toy within the infant’s arm reach in front of the infant. An opportunity will end when the infant no longer emits the target response for at least 5 seconds.

▫ Baseline - Six baseline sessions will be conducted within two weeks with 10 opportunities per session. No prompting and only natural, toy related consequences.

▫ Intervention- At least two intervention sessions consisting of 10 opportunities will be conducted each week. The interventionist will implement the prompting procedure and

fade prompts using a most-to-least prompt fading hierarchy and a time delay. During intervention, social consequences identified as preferred, (e.g., verbal praise and tickles), will be used as reinforcement for correct responses.

EM Intervention• Generalization (conducted just like baseline sessions)

▫ Stimulus generalization – assessed across toys, partners, and settings, once during baseline and once after mastery of each EM behavior. Generalization sessions will consist of five opportunities.

▫ Response generalization - assessed to another EM behavior and to an EM behavior chain which will consist of any sequence of EM responses. Dropping consists of forcefully releasing a toy from the hands. The EM behavior chain will involve a variable sequence of EM

responses taught in intervention. Like typically developing infants, who engage in “bouts” of EM behavior, the EM behavior chain observed will be measured as response generalization and will mimic these bouts. EM behavior chains will begin with reach/grasp and then proceeds to a variable sequence of visually examining, shaking, and banging.

Data Collection & Analysis• Data

▫ All EM responses will be measured and reported as the percentage of correct EM responses per 10-opportunity session. Data will be visually analyzed.

▫Pre and post intervention scaled scores from the Bayley Scales and Total AIMS scores from the AIMS will also be calculated and reported.

▫ Interobserver agreement (IOA) and treatment fidelity will be will be examined by trained undergraduate research assistants for 30% of sessions for each infant for each EM behavior.

Projected Results

What if I encounter CHALLENGING BEHAVIOR?!

•When implementing any learning program with infants and toddlers with Down syndrome, you will likely encounter challenging behavior.▫Challenging behavior = any behavior that

interferes with the task/learning program being implemented

• Interestingly, for toddlers with Down syndrome, challenging behavior is not always tantrumming, crying, or carrying on.▫Very often, it is social behavior to escape a

task/learning program

Challenging Behavior in Children with Down syndrome

▫Coe et al., (1990) and Dykens and Kasari (1997) found higher rates than typically developing children of: attention deficits social withdrawal noncompliance

▫Compulsive like behaviors (e.g., arranging objects, repeating certain actions) (Evans & Gray, 2000)

▫Talking to themselves (Glenn & Cunningham, 2000) ▫Problem behaviors associated with anxiety,

depression, and withdrawal increase with age (Dykens & Kasari, 1997; Einfeld, Tonge, Turner, Parmenter, & Smith, 1999).

Factors affecting challenging behavior: Motivating operations

(Michael,1982; 2000)

•A motivating operation is an antecedent event/stimuli that affects an individual’s behavior by changing the value (increases or decreases) of a consequence (reinforcer or punisher) and thus changes the likelihood the individual will engage in a certain behavior (either increasing or decreasing the likelihood).

(Also referred to as “setting events”)

Down Syndrome as aMotivating Operation

• Wishart (1987) demonstrated children with Down syndrome have a tendency, even at an early age to engage in escape behavior:▫ Demonstrated children with Down syndrome have a

propensity to engage in noncompliant behavior often taking the form of “cute” party tricks.

▫ Observed such behaviors during assessment tasks, particularly when the children were presented with slightly more difficult tasks.

▫ Thus, specifically in children with Down syndrome, there may be an increase in the reinforcing value of escaping demands and possibly an increase in the reinforcing value of attention.

What if I encounter CHALLENGING BEHAVIOR?!

•To deal with challenging behavior:▫1. Don’t panic▫2. Follow these next steps to determine

what is the best way of dealing with challenging behavior

Functional Behavior Assessment

•Process of determining the relationship between events in a person’s environment and the occurrence of challenging behaviors

• Identification of variables that are regularly associated with the occurrence and nonoccurrence of problem behavior.

•Components of a functional behavior assessment▫ Interview▫ Direct Observation▫ Environmental Manipulations (Functional Analysis)

Addressing Setting Events(Horner & Colleagues)

•Remove the setting event (e.g., ensure good night sleep, medication is taken)

•Neutralize the effect of the setting event (e.g., relaxation routine, provide food or medication, allow for a nap)

•Remove stimuli that occasion problem behavior when setting event present (e.g., change in schedule, reduce demands)

•Increased the rewards available for appropriate behavior when setting event present

Conclusion•Promising early literature•Promising more recent literature

incorporating increased knowledge about Down syndrome (behavioral phenotype)

•Potential to intervene at very young ages, even in a preventative manner

•Lots of potential applications

References for Critical Early Skills

• Requesting▫http://www.down-syndrome.org/reports/2059/

reports-2059.pdf• Verbal Imitation

▫http://www.ncbi.nlm.nih.gov/pubmed/21820858

• Expressive communication▫http://www.down-syndrome.org/case-studies/2

007/case-studies-2007.pdf• Challenging behavior

▫http://www.down-syndrome.org/perspectives/316/perspectives-316.pdf

▫http://www.down-syndrome.org/reviews/2076/

ReferencesBradley-Johnson, S., Friedrich, D. D., & Wyrembelski, A. R. (1981). Exploratory behavior in Down’s

syndrome and normal infants. Applied Research in Mental Retardation, 2, 213-228. Doi: 10.1016/0270-3092(81)90015-1

Bauer, S.M., and Jones, E.A. (submitted). Requesting and Verbal Imitation Intervention for Toddlers with Down syndrome: Generalization, Intelligibility, and Problem Solving

Bauer, S., Jones, E. A., & Feeley, K. M. (2014). Teaching Responses to Questions to Young Children

with Down Syndrome. Behavior Interventions, 29(1), 36-49.

Feeley, K. M., Jones, E. A., Bauer, S., & Blackburn, C. (2011). Requesting and verbal imitation in

children with Down syndrome. Research in Developmental Disabilities, 32, 2415-2430.

Feeley, K. M., & Jones, E. A. (2008). Strategies to address challenging behavior in young children with

Down syndrome. Down Syndrome Research and Practice, 12, 153-163.

Feeley, K.M., & Jones, E.A. (2008). Teaching spontaneous responses to a young child with Down

syndrome. Down Syndrome Research and Practice, 12, 148 – 152. doi:10.3104/case-studies.2007

Feeley, K. M., & Jones, E. A. (2008). Preventing challenging behaviours in children with Down

syndrome: Attention to early developing repertoires. Down Syndrome Research and Practice, 12,

11-14. doi:10.3104/reviews.2076 

Fidler, D.J. (2005). The emerging Down syndrome behavioral phenotype in early childhood:

Implications for practice. Infants and Young Children, 18, 86-103.Gordon-Brannan, M., & Hodson, B. W. (2000). Intelligibility/severity measurements of prekindergarten

children’s speech. American Journal of Speech Language Pathology, 9, 141–150.

Hodapp, R. M., & Fidler, D. J. (1999). Special education and genetics: Connections for the 21st

century. Journal of Special Education, 33, 130–137. Doi:10.1177/002246699903300301

Jones, E.A., & Feeley, K.M. (2011). Challenge: Improving service options for learners with chromosome

disorders. The APBA Reporter, 30.

Jones, E. A., & Feeley, K. M. (2011). Preventing challenging behavior in young children with Down syndrome.

The APBA Reporter, 29.

Jones, E. A., & Feeley, K. M. (2011). Foundations of communication in young children with Down syndrome.

The APBA Reporter, 28.

Jones, E. A., & Feeley, K. M. (2011). Extending ABA intervention to developmental disabilities other than

autism spectrum disorders: What are we waiting for? The APBA Reporter, 27.

Jones, E. A., Feeley, K. M., & Blackburn, C. (2010). A preliminary study of intervention addressing early

developing requesting behaviours in young infants with Down syndrome. Down Syndrome Research and

Practice. Advance Online Publication. www.down-syndrome.org/research-practice

McComas, J., Thompson, A., Johnson, L. (2003). The effects of presession attention on problem behavior

maintained by different reinforcers. Journal of Applied Behavior Analysis, 36, 297 – 307.

MacTurk, R. H., Hunter, F., McCarthy, M., Vietze, P., & McQuiston, S. (1985). Social mastery motivation in

Down syndrome and nondelayed infants. Topics in Early Childhood Special Education, 4, 93-109.

Peters-Scheffer, N., Didden, R. Korzilius, H. & Sturmey, P. (2011). A meta-analytic study on the effectiveness

of comprehensive ABA-based early intervention programs for children with Autism spectrum disorders.

Research in Autism Spectrum Disorders, 5, 60-69.Pitcairn, T. K., & Wishart, J. G. (1994). Reactions of young children with Down's syndrome to an impossible

task. British Journal of Developmental Psychology, 12, 485-489.Rasilo, H., Räsänen, O., & Laine, U. K. (2013). Feedback and imitation by a caregiver guides a virtual infant

to learn native phonemes and the skill of speech inversion. Speech Communication, 55, 909-931.

Wishart, J. G. (1993). Learning the hard way: Avoidance strategies in young children with Down syndrome.

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Resources

•New York State Department of Health Clinical Practice Guideline on Down Syndrome http://www.health.ny.gov/community/infants_children/early_intervention/docs/guidelines_down_syndrome_assessment_and_intervention.pdf

Thank You!We would like to thank all of the families that

participated in the studies described. Thank you to Cati Blackburn, and Mariam Chohan

for their diligent research developing and examining the interventions described.

Thank you to Jeffery Goldgrab, Nila Chourhury, Yishai Kadry, Ariella Altabe, Raquel Cerrato, Yoseph Jacobs, and Kristen Masciana, Eilis

O’Connell for assisting with various aspects of these projects.

Thank you to PSC CUNY for funding Bauer and Jones (submitted).

Sara M. Bauer, MA, MPhil, BCBADepartment of PsychologyQueens College and the Graduate Center,

CUNYSara.Bauer@qc.cuny.edu