Autism Spectrum Disorders: What to Know & Do MidSOUTH February 19, 2016 Karan Burnette, M.A., CCC-SLP Partners for Inclusive Communities Arkansas University Center on Disabilities University of Arkansas New Diagnostic Criteria DSM-5- released April, 2013 Collapses previous DX of Autistic Disorder, Aspergers Disorder and PDD-NOS to one DX Autism Spectrum Disorder (299.00) Autism Spectrum Disorder Diagnostic Criteria: A. Persistent deficits in social communication and social interaction across multiple contexts 1. Social-emotional reciprocity 2. Nonverbal communication for social interaction 3. Developing, maintaining and understanding relationships Autism Spectrum Disorder Diagnostic Criteria: B. Restricted, repetitive patterns of behavior, interests, or activities (minimum of 2) 1. Stereotyped or repetitive patterns of behavior, interests or activities 2. Insistence of sameness, inflexible w/ routines or ritualized patterns of behavior 3. Highly restricted, fixated interests 4. Sensory issues (reactivity or unusual interest) Autism Spectrum Disorder Diagnostic Criteria: C. Symptoms must be present in early developmental period D. Symptoms cause significant impairment in social, occupational or other important areas of functioning Severity Levels (DSM-5) Level 1: Requiring Support Able to speak in full sentences & engage in communication but whose to-and-fro conversation fails and whose attempts to make friends are odd and typically unsuccessful Level 2: Requiring Substantial Support Able to speak in in simple sentences, interaction limited to narrow special interests, markedly odd nonverbal communication Level 3: Requiring Very Substantial Support Able to speak with few words of intelligible speech, rarely initiates interaction, makes unusual approaches to meet needs only, responds to only very direct social approaches Autism Spectrum Disorders a group of complex neurodevelopmental disorders genetic predisposition, likely environmental influences impairments in social, communicative, and behavioral development differences in cognitive functioning, learning, attention, and sensory processing What do we know about prevalence? ASD prevalence in Arkansas has more than doubled 1 in 145 (SY2002) 1 in 65 (SY2010) Arkansas Results, :65 overall 1:40 boys; 1:172 girls Average age of DX: All ASDs: 5 yrs 1 mo Autistic disorder 4 yrs 7 mo PDD 5 yrs 3 mo Aspergers 6 yrs 3 mo Prevalence of ASDs by County, Arkansas ADDM 2010 vs Implications ASD is most common serious developmental disability More common than childhood diabetes, cancer and aids combined New DX every 20 minutes Estimated total societal cost $35 billion/year (for all individuals with autism over their lifetimes) (Harvard School of Public Health, CRC Press, 2006) Whats Going On??? Nobody knows for sure Lots of theories Genetics or Environment Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism Hallmayer, et al Archives of General Psychiatry 68(11): , 2011 Moderate genetic heritability: 38% Substantial Shared twin environmental component: 58% overestimated genetics and underestimated environmental impact Sibling Recurrence Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study Ozonoff, et al. Pediatrics 128(3): e488-9, % of infant siblings developed ASD Infant gender and the presence of an older affected sibling were significant predictors of ASD outcome Sibling recurrence rate much higher than previously suggested B Vitamin Study -ACHRI Pilot Study of the Effect of Methyl B12 Treatment on behavior and Biomarker Measures in Children with ASD Jill James, PhD. The Journal of Alternative and Complementary Medicine Vol 16 (5) 2010 pp Double blind, cross-over study with 30 children ages 3-8 Methyl B-12 SQ injections every 3 days Within responders, significant behavioral improvement was associated with significant increase in glutathione redox status Periconceptional Vitamins Prenatal Vitamins, one-carbon Metabolism Gene Variants, and Risk for Autism Schmidt, et al Epidemiology 2011: 22: Periconceptional use of prenatal vitamins may reduce the risk of autism, especially for genetically susceptible mothers and children Impact of Gut on Brain & Behavior Mind-altering Micro-organisms: The Impact of the Gut Microbiota on Brain and Behavior Cryan and Dinan Nature Reviews Neuroscience, October 2012 Studies are revealing how variations and changes in gut microbiota influence normal physiology and contribute to diseases ranging from inflammation to obesity. Accumulating data now indicate that gut microbiota communicates with the CNS---thru neural, endocrine and immune pathways---and therefore, influences brain function and behavior Brain-Gut-Immune Interaction Relationship among these three is bi-directional Brain Gut Immune ASD is thought to be a systemic disorder, involving all three Our bodies are 10X more bacterial cells than human cells Intestinal Permeability in ASD Alterations of the Intestinal Barrier in Patients with ASDs and in their First-Degree Relatives Magistris, et al The Journal of Pediatric Gastroenterol Nutrition 51 (4): , 2010 Measures intestinal permeability in 4 groups: 90 Children with ASD 146 Relatives 146 Adult Controls 64 Child Controls Children with ASD were worse than parents Difference between relatives and adult controls was significant GFCF diet decreased permeability Gut Microbiota Regulates Serotonin Indigenous Bacteria from the Gut Microbiota Regulated Host Serotonin Biosynthesis Yano, et al Cell, April, % of Serotonin is made in the gut Gut bacteria released metabolites and signaled synthesis of serotonin Sulforaphane Treatment Sulforaphane Treatment of ASD Proc National Academy of Science 111 (43): Double blind, placebo controlled study of young men (13-27) with moderate-severe ASD Harvard study conducted at Mass General Daily oral treatment for 18 wks followed by 4 wks w/o 3% change in placebo; 34% improvement in study group (social interaction, abnormal behavior, verbal communication) Sulforaphane is a chemical found in broccoli, cauliflower and cabbage NAC Treatment A randomized Controlled Piot Trial of Oral N- Acetylcysteine in Children with Autism Hardan, et al Biological Psychology 71 (11): , 2012 Double blind, placebo controlled study of children 3-11 NAC is a precursor of glutathione 12 week study Significant improvement in irritability and stereotypy, social cognition and autistic mannerisms Cerebral Folate Deficiency Dr. Richard E. Frye Director of Autism Research, ACHRI Studying cerebral folate deficiency in ASD Higher likelihood of an autoantibody that prevents folate from getting to the brain Testing for this autoantibody and researching use of Leucovorin therapy GI Statistics Endoscopic exam of 36 patients with ASD revealed: 69.4% reflux 41.6% chronic gastritis 66.6% chronic duodenal inflammation Journal of Developmental and Behavioral Pediatrics Niehus, et.al (April, 2006) 70% of children with ASD were found to have a lifetime history of GI symptoms such as abnormal stools, constipation, frequent vomiting, and abdominal pain Why is Transition Hard? Eric Courchesne, UCSD Autism Center of Excellence Leading Expert in Neurobiology of Autism Study in 2010 Individuals with ASD watched 3 different TVs with different things playing while mapped brain activity: Brain didnt shift when attention shifted Brain didnt disengage from original processing, just added the second and third one on top Noted repetitive behaviors and self-stimulation Co-Existing Conditions Anxiety Immune Dysregulation Metabolic Issues Regulation Disorders (sensory disorders) Gastroenterologic Symptoms Autism Spectrum Disorder Cognitive Characteristics Process better when information is spatial and concrete (not transient, auditory information) Gestalt processors; don't analyze well Need sameness for predictability Disrupted by changes in environment or routine Tend to learn rigid rules Splintered, unusual development Need longer period of time to process information Difficulty with transitions Autism Spectrum Disorder Speech/Language Characteristics Expressive may exceed receptive May not follow or use natural gestures Usually poor in talking about things outside the immediate situation Very literal in interpretation of language Tend to become dependent on verbal prompts Speech may sound stiff or "robot like Echolalic or scripted language Monologues Autism Spectrum Disorder Social Characteristics Eye gaze and use of eye contact may be different Perspective shifting is absent or limited Difficulty with turn-taking and interaction Difficulty making friends Difficulty reading the mood or feelings of others Difficulty initiating & maintaining interaction Autism Spectrum Disorder Sensory Characteristics Stereotypic behaviors or rituals Collect curious items Obsessive or compulsive behaviors Intense preference in clothing, foods, sounds, etc. Hypersensitivity to touch, sounds, visual stimuli or smells Use senses in an unusual manner (may smell, lick or touch objects or people inappropriately) Unusual body postures or movement patterns, particularly when upset or under stress Needs Intensive, early intervention Natural environments w/ supports Attend to physical needs Teach using strengths (visual/spatial input, obsessions, rituals) Evidence-based interventions Recognize the difference between cant and wont Evidence-Based Interventions: National Standards Project Established practice Emerging practice No evidence Language Supports: Provide concrete visual cues (schedules, task sequences, emotion cards, choice cards, escape cards, course outlines, ready checklists, study guides) Be cautious of language overload and literal interpretations (avoid sarcasm, idioms, jokes) Remember they take their cues from the visual, spatial worldnot from linguistic cues Use positive language, avoiding no and dont Language/Social Supports: Provide very specific verbal cues (sit down and be quiet rather than be nice) Allow more time for auditory processing Facilitate social interaction (turn taking, conversation, perspective shifting, joint attention, etc.) Help them read facial expressions, body language and social cues More support during non-structured times Visual Supports Using photographs, symbols, written words or some combination to assist the person with ASD in understanding situations and expectations Picture Communication Symbols by Mayer-Johnson, Inc Software: Boardmaker Google Images, etc. Boardmaker Sample Icons Visual Strategies Labeling Visual input of common language labels for objects in the individual s environment Visual Strategies Choice Cards Visual representation of desired objects, activities, persons, etc. to enable more control over his environment Start with high motivation items Visual StrategiesApp for I-Phone $2.99 Visual Strategies Visual Strategies Emotion Cards Visual representations of emotional descriptors such as happy, sad, angry, frustrated, bored, afraid/anxious To label real emotion (NOT a point-to activity Emotions Visual Strategies Escape Communication Visual representation of the need to escape used BEFORE behavioral communication takes over Escape Communication Visual Strategies Visual Schedules Visual representations of the activities of the person s day presented in sequence to bring order and security and to communicate changes with minimal stress Visual Schedules: TIPS Individualize to the student USE it; establish a routine Keep it even after the student memorizes it; use it to teach about change Modify form as student gets older Visual Strategies Visual Task Sequences Visual representations of the steps required to complete a particular task or activity (a task analysis presented visually) Visual Task Sequences Simple: steps to get dressed or make a snack or tie shoes Complex: steps to have a conversation Choose a time and communication partner Think of a topic Select a conversation starter Approach the person and say. Comment, question, use transition script Etc. Sample Visual Cues Individualized Token Boards 61 Bradley Story Things that are a 5 on the upset scale: When they mess up my order at McDonalds When we have math homework When we are stuck in traffic on I-40 When Dad missed the turn past Maumelle and we had to go to Crystal Hill to turn around When we cant go swimming at camp New Social Learning: Emotion # Behavior # REALLY??? Classmates Catalog Photo Here Andrew likes to think and talk about... At recess, Andrew usually.... Andrew can help others with... Andrew needs help on... Andrew has a dog/cat named... Its A Saying Dictionary Zip your mouth & put your eyes on me Put on your listening ears Just hold your horses Use your inside voice My head is about to split Did somebody get up on the wrong side of the bed this morning? Its raining cats and dogs Im so full I could explode Behavioral Supports: Implementing the sensory, language and social supports will PREVENT many behavioral issues Maintain structure and predictability without losing flexibility Intervene early with behaviors using PBS approach Do not touch or over-talk if in over-arousal state Learn the process for . Positive Behavioral Supports Focus on function behavior serves Get (Access) Get out of (Escape) Match intervention strategy to function Teach another behavior to meet that unmet need Data driven decision making Project Connect Federal grant to organize resources across the state for people with autism and their families and connect families to available resources in their region Peggy Schaefer Whitby, PhD, BCBA-D University of Arkansas ; Hollie Lawless, Coord. Autism Community Resource Guide (in process) AAROC Arkansas Autism Resource & Outreach Center: Hope, Direction and Support Service Coordination Parent Training Family Fun events Someone to listen who has been there Dianna Varady AAP Relatively New Program: Arkansas Autism Partnership Medicaid waiver program 18 months to 7 yrs, apply by 5 th BD Medical DX of Autism Outcomes Assessment of Basic Language and Learning Skills- Revised (ABLLS-R) ABLLS Comparison 96 children (in treatment from 12 to 31 months) Average length of treatment in sample was 24 months Total number of objectives acquired per child ranged from 15 to 1039, with an average of 397 Number of objectives acquired per month per child ranged from 1 to 45, with an average of 17 Parents Perspective .Priceless Within the first few months, I finally got to hear my son call me mommy for the first time. She would lose all physical and emotional control at the mere sight of her younger sister. Our daughters are now able to play together for several hours at a time. This has saved our family. When J started this program, he was not eating any solid foods and was barely talking. Now he eats more foods than we can count and talks nonstop. He is ready to start kindergarten in the Fall. My child was nonverbal, had hardly any eye contact and screaming was his only voice. Now he points, says what he wants and is no longer screaming (AMEN)! As a result of the preliminary outcome data and these comments from parents, Act 1008 of 2015 was signed into law on April 2, 2015, expanding the AAP by an additional 50 slots. With minor changes to the design, the 1915(c) renewal application was submitted to CMS on June 18, The start date is expected to be October 1, States Response What is possible? Meet Lauren James L. Dennis Developmental Center Arkansas Childrens Hospital INTEGRATED REPORT OF A TEAM EVALUATION NAME: Emily Lauren Tankersley DOE: ACH#: REF. SOURCE: Audiology, ACH AGE: 2 YRS., 0 MOS. EVALUATORS: MD, Dev Ped DOB: SLP SCHOOL: NOT APPLICABLE Psych Exam GRADE: NOT APPLICABLE Ped Psychologist LCSW Diagnosis: Childhood Autism Rating Scale (CARS) Laurens overall score of 39 indicates severe autism. IMPRESSIONS: Developmental history, behavioral characteristics in home and clinic are consistent with the Childhood Autism Rating Scale (CARS) and DMS III-R diagnosis of autism disorder, complicated by delays in speech/language (severe) and cognitive delays (BSID Age Equivalent of month); etiology unknown. Rule out organic etiologies. Intervention Attended integrated DDTCS from 3 to K Parents provided EIBI via UCLA model for 2 years Private school K-12 Immersed with typical peers from 3 to adulthood, school and home Participated in sports and other extracurricular activities Laurens Life After Early Intervention Graduated 5/5/12:Harding University SLP Major Grad: Cum Laude GPA: 3.64 Started Masters program at UAMS 8/13 Many friends and relationships Engaged to be married in November, 2014 Laurens Life After Undergrad Married November 1, 2014 Graduated Masters program in SLP at UAMS May 16, 2015 GPA: Awarded: Speech Pathology 2015 Student Clinician of the Year Preparing for National Boards Lauren & Will.. November 1, 2014 Discussion Questions Comments Stories to share Contact Information Partners for Inclusive Communities 322 Main Street, Suite 501 Little Rock, Arkansas Karan Burnette, AAP Director