Alabama Early Intervention & Preschool Conference

Montgomery Alabama

Early Autism: Building on Strengths

November 18, 2010

Caroline Gomez, Ph.D.State Autism Coordinator

The ChargeAct#2009-295

The Alabama Interagency Autism Coordinating

Council (AIACC) is charged with meeting the

urgent and substantial need to develop and

implement a:

• Statewide,

• Comprehensive,

• Coordinated,

• Multidisciplinary, and

• Interagency

system of care for individuals with Autism

Spectrum Disorder (ASD) and their families.

1% or 1 in every 110 children in US diagnosed with ASD (CDC, 2009).

ASD Increase in 8 yr-olds 2002-2006 (4 years)

www.cdc.gov.autism

United States Alabama

57% 82%

Need for ASD services continues to far exceed available resources.

Urgent & Substantial Need

Pervasive Developmental Disorders (PDD)

Diagnostic and Statistical Manual of Mental Disorders (DSM-TR, 2000)

Autistic Disorder (social-communication difficulties, stereotyped and/or restrictive/repetitive behaviors)

PDD-Not Otherwise Specified (not meeting full criteria for autism)

Asperger’s syndrome (normal to above average IQ; literal language understanding; lack of social skills, poor coordination)

Autism Spectrum Disorder (ASD)

Rett’s Disorder (girls; regression in speech and reasoning; 6-18 months; hand wringing)

Childhood Disintegrative Disorder (extremely rare; regression in multiple areas after 2 years- movement, bladder control; onset must be before 10 years)

Red Flagswww.firstsigns.org

• No big smiles or other warm, joyful expressions by 6 months

• No back-and-forth sharing of sounds, smiles, or facial expressions by 9 months

• No babbling by 12 months

• No back-and-forth gestures (i.e., pointing, showing, reaching, waving) by 12 months

• No words by 16 months

• No two-word meaningful phrases

• Any loss of speech or babbling or social skills at ANY age

Alabama is Behind the Curve

www.cdc.gov.autism

Children later diagnosed with ASD whose parents reported developmental concerns before 3 years of age

95%

Median age of earliest ASD diagnosis

51 months

Cost of lifetime ASD care can be reduced by 2/3 with early diagnosis and intervention.

Children with Autism

Grow up http://www.researchautism.org

Working-aged adults with ASD unemployed, but would like to work

74%

Adults with ASD still living with family

84%

Lifetime Incremental Costs for Individual with ASD = $ 3.2 MM

Cost to Economy = $35-90B annually

What Causes Autism?

• Genetic Factors Set Stage

• Environmental Factors are Triggers Causing Genes to be Expressed as Autism

• No General Consensus on Which Environmental Factors Should be Implicated

• Unlikely That One Trigger Will be Identified as Culprit

Note to Self: There is No Such Thing as a

Genetic Epidemic!

Genetic Predisposition

• Studies of Identical Twins (co-occurrence is 60%; tendencies in 2nd twin is 71-86%; other social communication difficulties is 92%; if 100%- purely genetic)

• Recurrence Risk is 10 to 20% in Families (stoppage factor; 25% chance of major speech/ communication delay)

• 4 to 5 times more common in boys than girls

Environmental Factors: We Live in a Toxic World

• Over 87,000 chemicals currently in widespread use (arsenic used to plump chickens)

• Over 600 actively used pesticides (none adequately tested)

• Drinking water “purified” by chlorination to kill bacteria; then aluminum added

• Chemicals in cosmetics, cleaning fluids, insecticides

• Cooking (aluminum, cooking in plastic- releasing toxins)

• Smoking

Co-Occurring Conditions(all can cause acute changes in

behavior)

• Cognitive Impairment (associated with an IQ of <70) : 26-50%

• Splinter skills

• Seizures: 25-30%

• Pica: 30%

• Ear Infections

• Sleep Problems: 50-85%

• Chronic Constipation and/or Diarrhea: 50-62%

• Low Muscle Tone: 30%

• Sensory Sensitivities

Building on Strengths:

Evidence-based Practice

Evidence-based practice bridges the science-to-practice gap with three core components:

1. Best research evidence

2. Clinical expertise and judgment

3. Individual values and preferences

The 4th factor: Capacity

Evidence-based Strategies Established – Emerging - Un-established - Ineffective / Harmful

Is an intervention strategy established:

• with a particular age group of children with ASD?

• with a specific diagnostic group?

• when a specific skill or behavior is targeted?

What strategy / strategies have been proven established for a two year old with PDD-NOS when targeting learning

readiness skills?

National Standards Report

(National Autism Center, 2009)www.nationalautismcenter.org

Building on Strengths: Evidence-based Strategies

Is an intervention strategy established:

• with a particular age group of children with ASD?

What strategy / strategies have been proven established for a two year old with PDD-NOS when targeting learning

readiness skills?

Established Strategy Age 0-2 Age 3-5

Antecedent Package √Behavioral Package √ √Comprehensive Behavioral √ √Joint Attention Intervention √ √Modeling √Naturalistic Strategies √ √Peer Training Package √Pivotal Response Treatment √Schedules √Self-management √Story-based

Evidence-based Strategies

Is an intervention strategy established:

•with a specific diagnostic group?

What strategy / strategies have been proven established for a two year old with PDD-NOS when targeting learning

readiness skills?

Established Strategy Autism

PDD-NOS

Aspergers

Antecedent Package √Behavioral Package √ √Comprehensive Behavioral

√ √

Joint Attention Intervention

√ √

Modeling √ √ √Naturalistic Strategies √ √Peer Training Package √ √Pivotal Response Treatment

√

Schedules √Self-management √Story-based √ √

Evidence-based Strategies

Is an intervention strategy established:

•when a specific skill or behavior is targeted?

What strategy / strategies have been proven established for a two year old with PDD-NOS when targeting learning

readiness skills?

Skills Increased

1. Academic: Precursors or required for success with school activities.

2. Communication: Systematic means using sounds or symbols.

3. Higher cognitive functioning: Complex problem-solving skills outside social.

4. Interpersonal: Social interaction with one or more individuals.

5. Learning readiness: Foundation for mastery of complex skills, other domains.

Skills Increased

6. Motor skills: Coordination of muscle systems.

7. Personal responsibility: Activities embedded in everyday routines.

8. Placement: Represents an important accomplishment.

9. Play: Non-academic and non-work-related activities.

10. Self-regulation: Management of one’s own behaviors in order to meet a goal.

Behaviors Decreased

1.General Symptoms: Involve a combination of symptoms.

2.Problem Behaviors: Can harm the individual or others or result in damage to objects or interfere with the expected routines.

3. Restricted, Repetitive, Nonfunctional Patterns of Behavior, Interests, or Activity (RRN): Reserved for limited, frequently repeated, maladaptive patterns.

4. Sensory or Emotional Regulation (SER): Extent to which individual can flexibly modify his or her level of arousal or response to function effectively in the environment.

Established Strategy

Skills Increased

Behaviors Decreased

Antecedent Package 2, 4, 5, 7, 9, 10 1, 3

Behavioral Package 1, 2, 4, 5, 7, 9, 10

2, 3, 4

Comprehensive Behavioral

2, 3, 4, 6, 7, 8, 9 1, 2

Joint Attention Intervention

2, 4

Modeling 2, 3, 4, 7, 9 2, 4

Naturalistic Strategies 2, 4, 5, 9

Peer Training Package 2, 4, 9 3

Pivotal Response Treatment

2, 4, 9

Schedules 10

Self-management 4, 10 2

Story-based 4, 10

Antecedent Package: Modification of events that typically precede behavior.

•Behavior chain interruption (for increasing

behaviors)

•Choice

•Cueing and prompting

•Modification of task demands

•Adult presence

•Inter-trial interval

•Errorless learning

•Incorporating special interests into tasks

•Time delay

Behavioral Package: Designed to reduce problem behavior and teach

alternative.

•Behavioral sleep package

•Behavioral toilet training/dry bed training

•Chaining

•Contingency contracting

•Discrete trial teaching

•Functional communication training

•Reinforcement

•Task analysis

Comprehensive Behavioral: Combination of applied behavior procedures.

Joint Attention Intervention: Building foundational skills involved in regulating

the behaviors of others.

•Pointing to objects

•Showing

•Following gaze

Modeling: Adult or peer providing a demonstration.

Often combined with other strategies such as

prompt-ing and reinforcement.

•Live modeling

•Video modeling

Naturalistic Strategies: Using primarily child-directed interactions to teach.

•Focused stimulation

•Incidental teaching

•Milieu teaching

•Embedded teaching

•Responsive education

•Prelinguistic milieu teaching

Peer Training Package: Teaching peers strategies for facilitating interactions.

•Peer networks

•Circle of friends

•Buddy skills package

•Integrated Play Groups TM

•Peer initiation training

•Peer-mediated social interaction

Pivotal Response Treatment: Targeting “pivotal” behavioral areas.

PRT focuses on targeting “pivotal” behavioral

areas —

•Motivation to engage in social communication

•Self-initiation

•Self-management

•Responsiveness to multiple cues

Schedules:Communicates a series of activities or steps.

Schedules can take several forms including:

•Written words

•Symbols

•Pictures

•Photographs

•Work stations

Self-management:Teaching to regulate own behavior.

•Checklists (using checks,

smiley/frowning faces)

•Wrist counters

•Tokens

•Visual prompts

Families Need Helpwww.nationalautismassociation.org

Divorce Rate: 80-85%

FAM1LY F1RST Program: Keeping Marriages Together in the Autism Community

• Provides couples with access to counseling, financial aid for counseling, and more.

ASD Individuals Prone to Wandering: 92%

Found: An Autism Safety Initiative• Provides families and counties nationwide with safety

tools for children with autism.

Recommended Reading

• Eckenrode, L., Fennell, P., & Hearsey, K. (2003). Tasks galore. Raleigh: NC: Tasks Galore.

• Frost. L., & Bondy, A. (2002). The picture exchange communication system training manual. Newark, DE: Pyramid.

• Gagnon, E. (2004). Power cards: Using special interests to motivate children and youth with Asperger syndrome and autism. Shawnee Mission, Kansas: Autism Asperger Publishing Company.

• Hodgon L. (2003). Solving behavior problems in autism: Improving communication with visual strategies. Troy, MI: QuirkRoberts.

• Hodgon L. (2003). Visual strategies for improving communication. Troy, MI: QuirkRoberts.

• Kranowitz, C. S. (1998). The out-of-sinc child: Recognizing and coping with sensory integrative dysfunction. New York: Berkley.

• Maurice, C. (1996). Behavioral intervention for young children with autism. Austin, TX: pro-ed.

• McCandless, J. (2003). Children with starving brains. US: Bramble Books.

Contact Information

Caroline R. Gomez, Ph.D. State Autism Coordinator Department of Mental Health Office of Children's Services

 caroline.gomez@mh.alabama.gov

www.autism.alabama.gov

Phone (334)353-7197 / Fax (334)353-7062

RSA Union Building 100 N. Union St., Suite 504P.O. Box 301410 / Montgomery, AL 36130