The Charge Act#2009-295

2. 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.

3. 1% or 1 in every 110 children in US diagnosed with ASD (CDC, 2009). Urgent & Substantial Need Need for ASD services continues to far exceed available resources.

4. 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)

5. 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

6. Alabama is Behind the Curvewww.cdc.gov.autism Cost of lifetime ASD care can be reduced by 2/3 with early diagnosis and intervention.

7. Children with Autism Grow uphttp://www.researchautism.org Lifetime Incremental Costs for Individual with ASD = $ 3.2 MM Cost to Economy = $35-90B annually

8. 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!

9. 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

10. 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

11. 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

12. 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

13. National Standards Report (National Autism Center, 2009) www.nationalautismcenter.org Evidence-based StrategiesEstablished – 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?

14. 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?

16. 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?

18. 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?

19. 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.

20. 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.

21. 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.

23. 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

24. 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

25. Comprehensive Behavioral: Combination of applied behavior procedures.

26. Joint Attention Intervention: Building foundational skills involved in regulating the behaviors of others. • Pointing to objects • Showing • Following gaze

27. Modeling: Adult or peer providing a demonstration. • Often combined with other strategies such as prompt-ing and reinforcement. • Live modeling • Video modeling

28. Naturalistic Strategies: Using primarily child-directed interactions to teach. • Focused stimulation • Incidental teaching • Milieu teaching • Embedded teaching • Responsive education • Prelinguistic milieu teaching

29. 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

30. 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

31. Schedules:Communicates a series of activities or steps. • Schedules can take several forms including: • Written words • Symbols • Pictures • Photographs • Work stations

32. Self-management:Teaching to regulate own behavior. • Checklists (using checks, smiley/frowning faces) • Wrist counters • Tokens • Visual prompts

33. 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.

34. 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.

35. 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 504 P.O. Box 301410 / Montgomery, AL 36130