Transcript Caring for Children with Autism Spectrum Disorders

Alabama Early Intervention & Preschool Conference
Montgomery Alabama
Early Autism: Building on Strengths
November 18, 2010
Caroline Gomez, Ph.D.
State Autism Coordinator
The Charge
Act#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.
Urgent & Substantial Need
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.
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 Flags
www.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
Median age of earliest ASD diagnosis
95%
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-topractice gap with three core components:
1. Best research evidence
2. Clinical expertise and judgment
3. Individual values and preferences
The 4th factor: Capacity
National Standards Report
(National Autism Center, 2009)
www.nationalautismcenter.org
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?
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
Antecedent Package
Behavioral Package
Comprehensive Behavioral
Joint Attention Intervention
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Modeling
Naturalistic Strategies
Peer Training Package
Pivotal Response Treatment
Schedules
Self-management
Story-based
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Age 3-5
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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
Antecedent Package
Behavioral Package
Comprehensive Behavioral
Joint Attention Intervention
Modeling
Naturalistic Strategies
Peer Training Package
Pivotal Response Treatment
Schedules
Self-management
Story-based
Autism
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PDD-NOS Aspergers
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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
Naturalistic Strategies
2, 4, 5, 9
Peer Training Package
2, 4, 9
Pivotal Response Treatment
2, 4, 9
Schedules
10
Self-management
4, 10
Story-based
4, 10
2, 4
3
2
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 Help
www.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
[email protected]
www.autism.alabama.gov
Phone (334)353-7197 / Fax (334)353-7062
RSA Union Building
100 N. Union St., Suite 504
P.O. Box 301410 / Montgomery, AL 36130