The Story of Ryan AUTISM FROM THE INSIDE OUT. Take Home Message

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1 AUTISM FROM THE INSIDE OUT Association for Library Service to Children American Library Association Annual Conference New Orleans, LA June 27, 2011 Ricki Robinson, M.D., M.P.H. Descanso Medical Center for Development & Learning La Canada, CA Clinical Professor of Pediatrics USC Keck School of Medicine The Story of Ryan Take Home Message Autism is a developmental disorder of childhood that affects communicating and relating and is best described as a spectrum disorder Autism has a neurobiological basis related to brain underconnectivity resulting in symptoms we see Going beyond the autism label and understanding the individual child and how he learns about his world is the key to building relationships, promoting learning and creativity Autism and anxiety = a perfect storm Libraries can become a valued community resource for individuals with autism across their life span HELP brings HOPE for their future! 1

2 How Common is Autism? Autism is NOT a rare disorder Autism will affect 1 in every 110 new births 1 in 70 boys (4 out of 5 are boys) Autism is more prevalent than Down Syndrome, childhood cancer, cystic fibrosis or multiple sclerosis Autism is now considered to be the third most common developmental disorder 2007 estimates of economic burden of autism was greater than $40 billion per year ($108 million per day) Source: Autism is: A developmental disorder Of childhood That significantly impacts a child s ability to Communicate and Relate Autism is A Spectrum Disorder (ASD) Characterized by Four Common Features Delays in both understanding and use of language Unusual responses to sensory stimuli Resistance to change and insistence on routines Difficulties with typical social interactions (delay in joint attention) 2

3 PDD* SPECTRUM ADD SPECTRUM Severe Kanner PDD Aspergers ADD Autism Autism NOS Syndrome with MR *PDD (pervasive developmental disorder) also includes Rett s disorder and childhood disintegrative disorder Overlapping Syndromes ADHD OBSESSIVE COMPULSIVE DISORDER AUTISM BIPOLAR TOURETTES SYNDROME Autism Definition Changing DSM V coming in 2012 One category: Autism Spectrum Disorders Potential core features Social communication delays Repetitive behaviors Sensory challenges Evaluated for severity of challenge Will allow progress to be charted and treatment planned to meet each challenge 3

4 Clinical Features What we see - Traditional symptoms - Emerging Symptoms Symptoms present by age of three - Earliest signs by 12 months - One-third may have regression Mental Retardation reported 75% (myth) Epilepsy 1/5 to 1/3 of all individuals (both early and late onset) Physical characteristics ¼ head circumference >97% Traditional Symptoms Social interaction and relationship difficulties Poor non-verbal communication Facial expressions Difficulty with eye contact (eye to eye gaze) Body posture Failure to establish peer friendship Lack of interest in joining others to share enjoyment Lack of empathy (myth) Traditional Symptoms Intolerance to change / rigidity Limited interests Unusual focus on pieces; not the whole (wheels of car) Preoccupation with topics Need for routine Difficulty with transitions Stereotyped behaviors (e.g. body rocking, hand flapping) 4

5 Traditional Symptoms Absence or delay of language or communication skills Delay in talking (40% non-verbal) Problem starting and continuing conversations Stereotyped use of language Echolalia (repeat word or phrases over & over) Prosody differences Difficulty understanding listener s perspective (e.g. humor, figures of speech) Emerging Symptoms Impaired small motor skills, including dysphagia and apraxia (motor speech problem in saying sounds, words, etc.) Impaired motor planning Auditory processing disturbance Fluctuating sensory dysregulation both hypo & hyper, including hearing, taste, smell, touch, sense of balance, sense of position in space, etc. Gastrointestinal dysfunction diarrhea, gas, other Eating disorder severe dietary self-limitation, chewing, swallowing problems Food and/or environmental hypersensitivity allergies, behavioral reactions to foods and dietary & environmental chemicals Hyperactivity Hypotonia low muscle tone, soft ears, double jointed, upper body weakness Sleep disorders Red Flags No babbling by 11 months of age No simple gestures at 12 months (like waving bye-bye, pointing or reaching) No single words by 16 months No two-word phrases by 24 months No response when his name is called Loss of any language or social skills at any age and 5

6 If you know one child with autism You know one child! Look kbeyond dthe autism label l and get to know each child as an individual RYAN When I met Ryan he had many of the observable symptoms. WHY he would respond this way was the real question Thus began my journey to find the keys to unlock each child s potential Why a developmental approach for children with ASD? Most similar to pediatric medicine Long history and well researched in pediatrics and child psychiatry Pediatricians are always aware of a child s developmental progress and base suggestions on child s individual growth No two children develop exactly alike (in wellness or disease) We all have individual differences For a child with social emotional developmental delays as the core issue, developmental approaches make the most sense 6

7 Development Approach in ASD: DIR/Floortime Model Broad-based framework for comprehensive multidisciplinary assessment and intervention program Tailored to the unique challenges and strengths of each child and family The objective is to build healthy foundations for social emotional and intellectual capacities Based on the work of Piaget, Erickson, Brazelton, Greenspan, Wieder and others Emerging research base DIR/Floortime Model D = A child s developmental abilities emphasizing social emotional growth I = A child s individual differences Sensory responsiveness & processing (auditory, visual-spatial) Motor functioning Language Cognitive Medical concerns R = Engaging in learning relationships tailored to child s unique profile D Social Emotional Developmental Growth Stage Milestone Age One Attention: 0 3 Months Regulation and Interest in the world Two Engaging and Relating 2-5 Months Three Two-Way Intentional Communication 4-10 Months Four Circles of Communication: Shared (often non-verbal) Problem-Solving Months Five Representation: Creating Symbols Using Words to Months Express Ideas Six Complex Ideas: Emotional Thinking, Logic and Sense Months of Reality Advanced Social-Emotional Stages Seven Eight Nine Multi-Causal and Triangular Thinking Gray Area Thinking Reflective Thinking 7

8 I Sensory Motor Feedback Loop INTEROCEPTION I R Affect = Emotional Connection The glue that organizes all of the jobs of the brain Coordinates the nervous system from the brain outward Lends purpose and meaning to the information we take in through our senses Emotional based learning experiences become an internal reinforcement that motivates interaction and spontaneity 8

9 Debunking the Autism Myths What s really going on? CHILDREN WITH ASD ARE MENTALLY RETARDED Just the opposite is true. Nearly 75% of children with ASD have average or above average IQs Non-Verbal not thinking CHILDREN WITH ASD MUST TALK BY THE AGE OF 5 OR THEY WON T DEVELOP LANGUAGE Non-verbal children can and do talk later in life sometimes as adults Typing helps children sequence words and thoughts which will promote later expressive language 9

10 CHILDREN WITH ASD DON T WANT TO SOCIALIZE Often they do want to have friends - they just don t know how to develop friendships They might not get the rules of interacting, resulting in anxiety and meltdowns INCREASING AUTISM BEHAVIORS ARE DUE TO THE AUTISM These behaviors are often responses to environmental stimuli, both externally and internally Think medical issues first Need to find out WHY they are happening not just try to extinguish the behavior STIMMING IS UNTOWARD STRANGE BEHAVIOR THAT NEEDS TO BE STOPPED (FLAPPING HANDS, ECHOING PHRASES, MAKING NOISES, WALKING IN CIRCLES) Not unlike biting fingernails, fidgeting, twirling hair, bouncing a knee, doodling dli Boredom May be pleasurable Means of coping impose order on a confusing world Help concentrate 10

11 COMPULSIVE ORGANIZATION IS BIZARRE AND HAS NO PURPOSE (LINING UP TOYS BY SIZE, COLOR, ITEM; NEED TO HAVE SCHEDULE) May be effort to bring order into their chaotic world. It is very frustrating and anxiety-producing (panic if something is out of order) May represent a visual spatial challenge INTELLECTUAL OBSESSIONS (e.g. Star Wars, baseball stats, video games) EXHAUSTIVE KNOWLEDGE OR INTEREST IN A NARROW SUBJECT INTERFERES WITH GROWTH AND DEVELOPMENT In a confusing world, mastery or control of a certain topic can be a grounding force These interests offer the best way to interact (follow the child s lead) Use these interests for comfort in a stressful situation A CHILD WITH AUTISM CAN T DO IT! A child with autism can accomplish so much when we support, believe, encourage and expect Then HOPE blossoms 11

12 ASD is a Neurobiologic Disorder Many causes common pathway ASD symptoms Genetic predisposition (20-30 genes possible) Environmental trigger(s) Disrupts the developmental growth of the brain in key areas required for sensory processing, language and social interaction ASD is a Neurobiologic Disorder Due to under-connectivity of the brain most likely related to synapse function Results in core symptom domains and associated features May also be multisystem disorder (e.g. GI) ASD: Many Roads Leading To One Place Cause Cause Cause Cause Cause Common Pathway ASD Core Symptoms

13 Brain Structure / Function Theory: Underconnectivity in ASD STUDY: LANGUAGE PROCESSING (Just, et al, BRAIN, 2004; 127: ) fmri HFA during sentence comprehension vs verbal IQ matched controls ASD more activation than control in Wernicke s (LLST) area ASD less activation than control in Broca s (LIFG) area Functional connectivity (degree of synchronization or correlation of time series of the activation between various cortical areas) lower for ASD vs control Findings suggest disordered language in ASD secondary to lower degree of information integration and synchronization across large scale cortical network for language processing 13

14 Underconnectivity Theory ASD more processing of individual words Wernicke activation Consistent with hyperlexicality ASD less processing in semantic, syntactic, working memory processes Broca (LIFG) activation Integration meanings of individual words into a coherent conceptual and syntactic structure Consistent with impaired ability to process meaning of complex sentences 14

15 Decreased Functional Connectivity in ASD Coordination and communication between cortical areas Not specific to language tasks but general phenomena ASD entails preservation and enhancement of function of individual cortical centers but poorer integration of information at higher levels of processing that require more coordination among cortical centers Dissociation between intact or enhanced simple abilities and impaired higher order abilities affect: Motor, memory, language, abstract reasoning, sensory domains Consistent with ASD can master detail, narrowed attention focus yet difficulty in higher level abstraction (e.g., facial expression, personal intent, social games, etc.) What Does This Mean for Treatment? There is help lots of it! There is hope and potential for the children to follow their dreams to a meaningful life Early intervention is key Often starts 1:1 Intensive multidisciplinary program up to 40 hours per week Parent driven Treatment component for each challenge Fostering relationships is the foundation for language, learning, intelligence and creativity R Affect = Emotional Connection The glue that organizes all of the jobs of the brain Coordinates the nervous system from the brain outward Lends purpose and meaning to the information we take in through our senses Emotional based learning experiences become an internal reinforcement that motivates interaction and spontaneity 15

16 R Floortime = Library Time It s all about the interaction! Technique used to support developmental growth being mindful of child s I to capture the R Spontaneous, semi structured or sensory motor play that follows the child s interests Goal: continuous flow of reciprocal interaction i Begin at a child s social emotional developmental level Match interactions to child s sensory motor profile Use emotional gestures and facial expressions to sustain interactions Match movements to his rhythm and timing Look for the gleam in his eye and yours Opportunities occur all day long DIR/Floortime Research Social Emotional Growth Chart in Bayley Scales of Infant and Toddler Development Bayley, N. (2005 Bayley Scales of Infant and Toddler Development. 3 rd ed. (Bayley III). Bulverde, TX: Psychological Corporation Greenspan Wieder 200 cases Greenspan, S.I. and Wieder, S. (1997) Developmental patterns and outcomes in infants and children with disorders in relating and communication: a chart review of 200 cases of children with autistic spectrum disorders. Journal of Developmental and Learning Disorders 1(1): Greenspan Wieder follow-up study Greenspan, S.I. and Wieder, S. (2005) Can children with autism master the core deficits and become empathetic, creative, and reflective? A ten to fifteen year follow-up of a subgroup of children with autism spectrum disorders (ASD) who received a comprehensive developmental, individualdifference, relationship-based (DIR) approach. Journal of Developmental and Learning Disorders 9:1-29. Play Project Soloman, R., Necheles, J. Ferch, C. and Bruckman, D. (2007) Pilot study of a parent training program for young children with autism: The PLAY project home consultation program. SAGE Publications and The National Autistic Society 11(3): ; (200705)11:3) York Studies York University DIR/FT RCT in progress Challenges Associated with ASD Core features (social relationships, language) Associated symptoms Anxiety Attentional issues Tics Obsessive behavior Mood concerns Aggression 16

17 ASD Challenges Along the Way Medical concerns Routine childhood illness Nutrition Si Seizures GI problems Sleep Immune disorders Autism Solutions How to Create a Healthy and Meaningful Life for Your Child Foreword by Stanley I. Greenspan, M.D. Part I: Is it Autism? 1 Ryan 2 What Is Autism? 3 What Causes Autism? Part II: Before Your Child Is Evaluated 4 Understanding Social and Emotional Development 5 How Your Child Experiences the World around Him: The Sensory-Motor System in Action 6 A Comprehensive Evaluation and Treatment Approach DIR/Floortime Part III: Determining Whether Your Child has Autism and Knowing What to Do 7 The Evaluation Process 8 Treatment Plans 9 Staying on Track 10 ASD and the Family Part IV: Your Child s Communication Issues 11 Behavior As Communication 12 Augmentative Communication 17

18 Autism Solutions How to Create a Healthy and Meaningful Life for Your Child Part V: Your Child s Health 13 Keeping Your Child Healthy 14 Medical Conditions and ASD 15 ASD and the Double Syndromes 16 Seizure Disorders in ASD 17 Gastrointestinal (GI) Illness 18 Allergies and Immunological Disorders 19 Sleep Disorders 20 Understanding Medication and Its Use in ASD 21 Long-Term Medical Complications Part VI: Creating a Meaningful Life for Your Child 22 Fostering Independence 23 Education 24 Sports, Socializing, and Relationships 25 Transition to Adulthood Epilogue Challenges may only be expressed by increasing autism symptoms AUTISM = ANXIETY 18

19 Anxiety and Autism: The Perfect Storm Social Emotional Developmental Delays Individual Differences Physiologic response difficulties in ASD Under-connectivity: amygdala and hippocampus Potential abnormal stress responses Constant state of arousal Confusion over physiologic symptoms Possible compromise of brain neurotransmitters (serotonin required to process anxiety) Co-morbid psychiatric conditions (e.g. GAD, OCD) Behaviors = fight or flight response A Developmental Approach Behavior is communication Look beyond the behavior Ask why? What could be happening to the child to increase anxiety? Has an underlying challenge been overlooked? Could the child be ill? Has his environment changed? What role does (lack of) comprehension play? Autism Anxiety Feedback Loop Environmental influences Challenging Sensory Processing Unresolved Medical Conditions Poor Comprehension Situation Poor Motor Planning Physical Symptoms Add fuel to the fire Anxiety Mental Symptoms Emotional Symptoms Bolting Aggression Self Absorption Repetition (calming) Tantrums 19

20 Developmental Approach to Diagnosing Anxiety in ASD Look beyond the Anxiety - Search for potential causes Sensory processing issues Don t forget visual spatial concerns Motor planning challenges Social Emotional Developmental elopmental Delays Unresolved fears Poor comprehension Undiagnosed medical issues Environmental triggers and responses Family influences Community influences Developmental Approach to Treating Anxiety in ASD Stop the anxiety feedback loop Recognize child s challenges and pattern of response Understand and modulate environmental responses Address sensory motor concerns (sensory rescue package) Work with the child at his developmental level Help child understand what is happening Developmental Approach to Treating Anxiety in ASD Consider DIR/FT methods to regulate and assure working at appropriate developmental levels Using FT techniques helps to solidify a child s functional capacities which eventually support his comprehension and help him achieve mastery Decreasing his fears Normalizing physiologic responses Increasing his ability to be comfortable Hopefully untoward behaviors will diminish Consider medication treatment when necessary 20

21 LIAM 6 year old diagnosed with ASD at 18 months Problem: Increasing stims and repetitive behaviors Crying for no apparent reason Refusal to try anything new Increasing tension in the family Symptoms increased over summer D I R Liam s Developmental Profile Early stage 5 (30-35 months) Sustained continuous flow of reciprocal interactions Uses 500 words spontaneously in simple phrases Beginning to build bridges between ideas Over-reactive sensory responsiveness Motor planning challenges Auditory processing delays Comprehension appropriate for his developmental level Possible visual spatial challenges Floortime requires low tone of voice and movement; slowing down rhythm to match his and use of gentle challenges to foster thinking and problem solving Liam s Medical Concerns Petit mal seizures Anxiety Rx = Depakote Under control Rx: Sensory/motor rescue package Appropriate Floortime interactions to problem solve anxiety-provoking situations SSRI (Lexapro) 21

22 Liam: Important Historical Findings Temporary move over the summer Toileting behavior had changed Sibling diagnosed with a streptococcal throat infection Doctor visit observations Liam s increasing behaviors recognized FT interactions greatly impacted by behaviors Highly anxious Physical Exam within normal limits except for potential abdominal fullness Laboratory findings Normal blood work Abdominal x-ray positive for severe constipation Autism Anxiety Feedback Loop Environmental influences Challenging Sensory Processing Unresolved Medical Conditions Poor Comprehension Situation Poor Motor Planning Physical Symptoms Add fuel to the fire Anxiety Mental Symptoms Emotional Symptoms Bolting Aggression Self Absorption Repetition (calming) Tantrums Liam s Treatment Short-term Sensory motor Increased interactions to improve Liam s regulation DIR/FT interactions geared towards Liam s fears Environmental / Family Recommendations Moving home calendar Parent counseling Medical Constipation management Anxiety medication Long-term Addressing unresolved challenges Visual-spatial 22

23 Children With Visual Spatial Challenges Lost in space Unable to direct vision in purposeful way (wander, repetitive, line up items) World becomes rigid Bound by what he knows relies on this memory Especially difficult when things are moving in the environment Extremely anxious and frustrated May tantrum, become aggressive or shut down Children With Visual Spatial Challenges May be locked in developmentally delayed visual patterns Poor eye contact Use of peripheral or central vision Visually sweeping the room rather than looking at or finding specific items Looking past rather than at people and objects Evaluation with a developmental optometrist Treatment: visual spatial exercises Good books: Thinking Goes to School (Furth and Wachs) Hidden in Plain Sight (Wieder, in progress) Autism: Help Restores Hope When we meet all of these challenges with Understanding Plan of action (may need Plan A, Plan B etc) Then parents and children are encouraged and hope is renewed This is the basis of my philosophy, approach and theme of Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child 23

24 Tips for Building Relationships During Library Time Librarians, parents and care givers can develop a working partnership Move beyond the label of autism to knowing the individual child Demystify the child for the adults and children Obtain an information survey of the child s strengths and challenges Potential Library Questionnaire Parents Can Share Important Information About their Child Is your child a visual or an auditory learner? Does he have visual spatial challenges? What are his sensory reactivities? (over, under, mixed) Does he have motor planning difficulties? What is his means of communicating his needs and wants? What are his favorite items to hold, play with or talk about? Potential Library Questionnaire Cont d Does he have any medical conditions? What do you think is the ideal setting for him to sustain the longest interaction? What is likely to derail his interaction? Do you have a sensory rescue plan? If so, what is it? Does your child have difficulty with transitions? What makes your child anxious? What are his favorite books? If reading, is he a sight or a phonetic reader? Who turns the pages for his best concentration? 24

25 Potential Library Questionnaire Cont d What are his favorite books? Does he do better if he has his own book to read during library time? Who turns the pages for his best concentration? If reading, is he a sight reader or a phonetic reader? Does he understand what he reads? Librarians Can Help Parents By: Being open to what the children need (e.g. special items like koosh balls or extra copies of books) Sharing the library curricula (parents can prepare their child in advance for the books to be read) Sharing the library schedule Using visual schedules Producing a video of what happens at library time for parents to share with their children Keeping open the lines of communication Creating a sensory-acceptable environment for story time Expanding the theme by finding many books about what the children love for them to explore keep favorites but always change Remembering that anxiety may cloud the picture for the child and can be unrelated to what you re doing Being prepared to go with the flow - Things may not happen as you expect! 25

26 Remember, it s all about the interaction! Whole language books can be helpful for children with ASD Think about comprehension: children with ASD often decode (hyperlexia) but may not comprehend Consider developing lists of books for children with ASD with suggested questions for parents to ask at home that emphasize comprehension Parents can help librarians by: Filling out survey about their child Preparing child for library visit Maintaining open lines of communication Sending an prior to the library visit if the child has had a difficult day Maintaining an upbeat, encouraging attitude to support child s transition to the library Parents can help librarians by: Reading books with child before and after the library visit emphasizing comprehension Exploring new books on favorite topics through nighttime reading Keeping regular library schedules Making library time family time! 26

27 Children s Library Time Preparation At least one pre-visit to the library Develop a library photo journal for the child Include all the contents of the library: pictures of the rooms, the tables, etc. and especially the people. Recommend photos of the child and the librarian enjoying books together Practice library time at home using the same schedule as planned and setting up the room as a replica Keep lines of communication open with the child Closing Thoughts Learning is life long. The library can become a most valued community resource for individuals with ASD that can provide comfort, safety, relationships and learning throughout their lifetime. Librarians can play a critical role in providing a joyful interactive learning experience for children with ASD that will support their wanting to return again and again! 27