Beyond Med Management: A Survey of Non-Pharmacological Approaches to Autism Spectrum Disorders
Joshua D. Feder, M.D., DFAPA Assistant Clinical Professor, Dept of Psychiatry, UCSD School of Medicine, Faculty, Interdisciplinary Council on Developmental and Learning Disorders
Disclosures • ICDL Faculty – minimal - review of clinical write ups, travel for week of volunteer work • NIMH/ Duke University – minimal – for time spent in pharmacogenetic research activities
Feder 411 •
Career – biomedical engineering and math, Navy – some operational medicine, psychiatry at Balboa, child and adolescent at Tripler, Clinic at Pearl, Chief of Child at NNMC/ USUHS faculty, Greenspan & Wieder in DC, back to San Diego in ‘96, ‘unejectible’ in Solana Beach since 2001.
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Research – perflorinated hydrocarbons, mathematical models of mind and cognition (ADHD), physician use of mammography, blood preservation, relationship based interventions, pharmacogenetics
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Autism Spectrum Disorders: 1980 Mass. Assn for the Blind (Congenital Rubella); 1982 teacher at school for autistic adults (Behavioral training); BUSM Pediatric Neurology 1985; Child Study Group – Tripler (Lee); Neurodev. Clinic NNMC 1993 - 1996; Greenspan, Wieder et al ICDL 1993-present; AACAP Autism Committee 1997-2000 & ad hoc (Volkmar, Cook); AACAP Autism Medication Panels (Volkmar); AACAP Autism in the schools training 2006 (Chenven, Akshoomoff, Feder).
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Practice – time 1/3 evaluation and case management, 1/3 therapy, 1/3 teaching and research; dx ½ developmental and learning disorders, ½ general psychiatric (ADHD, Bipolar, PTSD, Tourettes, Depression, OCD etc.); age range 1/3 infants and children, 1/3 older children and adolescents, 1/3 adults
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Community work: Rady Autism Research Workgroup, BRIDGE Collaborative, SDPS Ethics committee / resident training in ethics; ICDL Institute, F2F and online courses
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Outside life – coaching science and engineering, reading, care of chronically ill house pets…
Objectives • Review symptoms of ASDs. • Biopsychosocial (individualized developmental relationship based) approach to ASDs. • Review of many non-pharmacologic treatments of ASDs. • Have one clear bottom line to take away. • Resources and references.
Assumptions • You may not have heard any of this before. • You will be face with all of it, more and more often. • You will know to access resources when you are stuck.
Wide Array of Symptoms… •Activity •Attention, focus, distractibility •Anxiety, panic, fears •Cognition •Communication & Language •Depression, poor self esteem •Mood Instability (“aggression”)
•Motor Planning, motor tone •O/C, rigidity, Perseverative •Reciprocal interaction •Sensory Sensitivity •Repetitive movements •Tics •Safety! •Sleep
Dizzying Numbers of Therapies... - Discrete Trial - FastForWord - DIR®/Floortime - Hyperbaric Oxygen - Music Therapy - Picture Exchange Communication System (PECS) - Pivotal Response Training - Occupational Therapy - Rapid Prompting Method - Relationship Development Intervention - SCERTS Model
- Secretin - Sensory Integration/Sensory Processing - Social Stories - Speech and Language Therapy - TEACCH - Anti-Yeast Therapy - Dietary Interventions - Vitamins/Nutritional Supplements -Medication for Treating Autistic Symptoms - many more….
Old School • • • •
Educational placement – spun didactics Behavioral therapies – spun like CBT Speech therapy – drilling words, scripts Occupational therapy – ‘hand over hand’ from writing to throwing • Medication – mainly for aggression
Recent twists • ‘Biomedical’ - supplements, diets, etc. • Sensory integration – recognition of the huge range of individual differences • Relationship based interventions – spun from infant mental health
Organizing the Plan • • • •
BPS – Biopsychosocial model George Engel Prioritize symptoms Intervene where you can
D.I.R.- Heir to BPS
• Developmental • Individual Differences • Relationship-based
Developmental • Affect is the glue to cognition, learning, and development (e.g. impact of post-partum depression on the infant, etc.) • Dual-coding of affect and cognition • Stages of social-emotional development • The key to relating and learning
Developmental: You can't logically talk with a child who is perseverative if the child cannot engage. The child seems 'logical', Spock-like, perhaps, but doesn't actually communicate in a useful manner to solve social problems and relate with others.
Developmental: • There are many models and schools of child development • You have learn them all… • FEDL: Functional Emotional Developmental Levels (Greenspan) • This one is a good frame for the rest.
DIR速 Functional Emotional Developmental Levels (FEDL)
Level I: Shared Attention and Regulation (0-3 months) The first relationship, experiencing empathy for the first time
DIR速 Functional Emotional Developmental Levels (FEDL)
Level II: Engagement and Relating (2-6 months) Depth of the relationship and variety of emotional signally is important
DIR速 Functional Emotional Developmental Levels (FEDL)
Level III: Two-Way Purposeful Communication (4-9 months) Reading and responding to emotional signals at 8-9 months Sense them and feel them in the body, physically
DIR® Functional Emotional Developmental Levels (FEDL)
Level IV: Shared Social Problem Solving (9-18 mo)
• Negotiating problems – 18 mo • Beginning of cooperative, collaborative interaction – 18 mo • Shared humor between toddlers at 18 mo • Behavioral evidence of altruism: pat mommy’s arm (may be imitation at this point), also around 18 mo
DIR® Functional Emotional Developmental Levels (FEDL)
Level V: Creating ideas (18-30 mo) • Shared pretend play at a symbolic level • Shared world of emotions – joy, anger, sadness, etc. • Child not only feels empathically but can think empathically.
DIR® Functional Emotional Developmental Levels (FEDL)
Level VI: Building Bridges Between Ideas: Logical Thinking (30-48 months) • Cause and effect: asks why you feel that way • Can separate his internal world from your world, and still feel concerned
DIRÂŽ Functional Emotional Developmental Levels (FEDL)
Level VII: Multi-Cause Comparative Thinking (4-6 years) Mom’s mad, and the child understands that she had a bad day at work, but asks if there are other reasons.
DIR® Functional Emotional Developmental Levels (FEDL)
Level VIII: • • • • •
Emotionally Differentiated Gray-Area Thinking (6-10 years) Hierarchies, playground politics Best time for disappointment – better to lose now and have mom’s support than to lose as an adult and have no experience to fall back on. Emotional experiences define, expand, and deepen the boundaries for the self. Without anger we don’t know what annoys us, without joy we don’t know what makes us happy. Refining the gradations of these emotions Expanded and deepened appreciation for emotional experience makes us more able to appreciate it in others.
DIR® Functional Emotional Developmental Levels (FEDL) Level IX:
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Intermittent Reflective Thinking, A Stable Sense of Self, and an Internal Standard (9-12 yr and beyond) Adolescence and beyond… Ability to empathize in a truly reflective manner Able to understand a range of feeling in others and compare it to your stable sense of self, retaining who you are Helps you to be truly a great friend or partner. Reflecting on yourself and others w/o taking over nor removing yourself Expanding sense of empathy, more and more inclusive: other kids, groups, school, country, … the world (other races, religions, etc.).
Individual Differences: • e.g. talking in a manner that the child can hear, not just talking loud to get through ‘DO YOU SPEAK EEENGLISH?’ • e.g. floppy child, active child - need to match the child
Individual Differences: Sensory sensitivities: usually mixed patterns of reactivity • • • • • • •
Tactile – light touch, deep pressure Vestibular - motion Proprioceptive – body in space Auditory Visual Tastes Odors
Individual Differences: Postural Control • • • • • • •
Simple gesture to show desire – gaze and reach Physically mirror gestures Imitate with purpose Obtain desires Explore Play Interact
Individual Differences: Responding to Communication • • • • • • •
Orient to source of sound or gesture Attune to key tones or affects Respond to key words Shift auditory attention between self and other Follow instructions Understand questions Abstract conversations
Individual Differences: Expressive Communication • • • • • • • •
Mirror vocalizations with intent to communicate Mirror gestures with the intent to communicate Use unique non-verbal gesture with intent Use affective tones and sound to convey intent Single words for intent, action, & desire Use two word phrases meaningfully Use sentences meaningfully Use phrases and sentences back and forth with logical flow
Individual Differences: Responding to Visual Environment • • • • • • • •
Focus on desired object Alternate gaze (visual joint attention) Follow another’s gaze to object of other’s intent Switch visual attention between self and other Differentiate visual figure from background Search for hidden object Explore two areas of a room for desired object Explore more than two areas assessing space, shape, and materials
Individual Differences: Praxis – Orchestrating Information • Initiate ideation with clear goals and purpose • Use sensory perception from the body, auditory, visual information to develop a plan. • Develop the steps of a sequence • Execute the steps and persist • Adapt the plan if it doesn’t work or if someone interferes with the plan.
Relationship Based AFFECT IS THE GLUE Nothing happens , in the end, • • • •
if the child doesn't care, or isn't motivated if the parent isn't emotionally engaged too if the teacher is stuck on compliance if an OT or SLP is only working from top-down template of, say, fine motor writing skills, or turn taking pragmatic schemes
Relationship Based: • Co-regulation • Engagement • Flow
circlestretch Help the child be… • Calm enough to interact • Truly connected to others • In a continuous expanding balanced back and forth flow of interaction “Go for that gleam in the eye!” http://www.circlestretch.blogspot.com
Relationship Based: Calm enough: (Co-regulation, not ‘self-regulation’) • We do this together – not a ‘sensory break’ • Meet the person 80% - help the person settle down with you. • ‘Calm enough’ might mean active enough. • Think about what works and what doesn’t work – know those individual differences…
Relationship Based: Truly Connected to Others (Engagement)
• That gleam…mostly this is fun and feels good for everyone • It’s the reason, the ‘buy-in’, the bond, that will lead to compliance. • Joint attention, but more than that. • Joining whatever he person is doing to get it started (not an end in itself).
Relationship Based: Circles • The ‘back and forth’ of an interaction • Motivation is always there: the child is always doing something • Join in, make yourself a part of the activity • Or if you can’t just join in, you can gently and playfully get in the way • Maybe be the person with the stuff the child wants – has to get it from you
Relationship Based: Things to Avoid • Don’t entertain, quiz, or direct the child with your games, demands, or ideas – wait for a response • Don’t just follow him around - be part of his world • Every idea is a good idea • Avoid the ‘N’ word (no). • Connect, then do the social emotional problem solving: plan for later, express wishes and emotion, recognize wishes that might not come true.
Relationship Based: Avoid Questions
Feder’s Tip of the Century • Questions put people on the spot, and make them more likely to get upset and close up or act mad • Most questions are top-down, ‘Guess what I’m thinking’ • Statements create social ‘problems’ that the other person can ‘solve’ • Try it out. It’s hard, but worth the work.
Relationship Based: FLOW • FEDL Level IV • The ‘engine’ of relating you need to be able to expand thinking and problem solving • It might look like ‘baby games’, but it is what we all do every day, constantly, with each other • Think of your own experiences of flow: tennis, dating, a good game of catch, etc.
Relationship Based: Symbols • Words are more than labels • Play is more than trained actions or turn taking • Gestures, when they ‘talk’ about things or ideas that can replace actions – are more than pointing • Treat everything as having meaning – it’s ok to be wrong - the person will correct you
Relationship Based: All Kinds of Symbols From playing with dollies when the child really means it or crashing cars when it really expresses something to Fantastical stories of castles and kings, princes, armies, unicorns, spies, heroines and every kind of complex human motivation (think of the 7 virtues and 7 vices)
The Seven Sins and Virtues in Human Motivation Lust
Self control
Pride
Humility
Greed
Generosity
Envy
Love
Anger
Kindness
Sloth
Zeal
Gluttony
Faith and Temperance
circlestretch Help the child be… • Calm enough to interact • Truly connected to others • In a continuous expanding balanced back and forth flow of interaction “Go for that gleam in the eye!” http://www.circlestretch.blogspot.com
The Many Therapies Feder’s Confidence in a Treatment: • A Lots of prospective data and clearly relevant to child. Few or no significant side effects. • B Lots of data but not always relevant, or data is limited but supportive, relatively safe when done well • C Mixed data, and/ or reasonable theory, not necessarily dangerous • D No positive data, and/ or not enough data, and/ or unclear theory, and/ or only unscreened anecdotal data, and/ or safety concerns, but probably some people who have apparently clearly benefitted • F Negative data, and / or significant evidence of danger
A • None
B Behavioral Training • • • • • • •
Discrete Trial ABC's antecedant, behavior, consequence ABA Applied Behavioral Analysis Functional Behavior Assessment Data driven Behaviors can be changed B for frequent lack of relevance and over-focus on compliance (annoys the children).
B Cognitive Behavioral Therapy • E.g. for OCD, anxiety, depressive symptoms • Can be effective, for the right person, and if done well • Problematic when executed without attention to the surround, e.g., talkative intellectualizing person who does not change
B DIR®/Floortime • • • •
Makes sense, I think it works great Need more prospective research Circlestretch.blogspot.com ICDL.com
B Inclusion • Being in a regular class, no matter how challenged the person is • Associated with some of the best outcomes for function • Social modeling • Win-win when done right for all students • Safety can be a big concern, support to staff is rare
B Medication for Autistic Symptoms • • • •
A talk for another time See the RADY Autism Resource Guide See Circlestretch.blogspot.com B for lack of reliable efficacy, side effects
B Picture Exchange Communication System (PECS) • Very helpful addition to communcation • Child is less frustrated when he can ask • B for over-reliance on ‘manding’ vs. expressive communication, and for lending to reduced expectations of the child
B Pivotal Response Training • A more democratic version of behavioral • Relevance still an issue • Some initiative, but limited
B Occupational Therapy • • • •
fine motor skills – critical area gross motor skills – critical area sensory integration - critical area B for frequent top-down delivery, sensory breaks that turn into escape, and research on efficacy that is convincing to some, not to others
B One on One Aides (para-professionals) • Good, engaging people who can support development and facilitate interactions are rare gems and can be the key reason a child improves. • Over-dependence vs. ‘Anne Sullivan’ • Rotating aides as and saying you do not want a child to become to accustomed to one person is often an excuse for staffing problems; the effect on the child is like changing teachers several times a year
B Relationship Development Intervention • Behaviorally taught social skills • Great ideas – limiting in execution • Thinking about thought - reflective but trouble with natural flow
B SCERTS (Social Communication, Emotional Regulation and Transactional Support) • Does all that • Less attention to family dynamics • Less attention to individual differences
B Social Stories • Teaching flexibility • Usually we do x, sometimes y happens instead. That’s ok…. • A small and useful piece of a bigger pie • Beyond this, there is a great, Talmudic-inspired schema: ‘it’s great when things happen the way we expected…’
B Special Day Class • Aka resource room – SDC may ‘no longer exist’ • More staff to students • Limiting socially • Lower expectations
B Speech and Language Therapy • • • • •
A vital service Requires talented practitioners Drill and kill can be top down So can top down social skills Communication beyond speech, engaging and flowing, can be an incredible thing
B Social Skills Groups • Universality – being with others with similar challenges • Getting out in the community and doing things • Safety issues • Can be very didactic • Research, what research?
B Supportive Psychotherapy • Many people on the spectrum respond to empathy and understanding • Many people spend time sitting and being understanding without really helping the client
B TEACCH (Treatment and Education of Autistic Communication Handicapped Children) • Structured teaching – really works for learning tasks and routines • Visual models and schedules are usually very helpful for these persons • ‘Comforting’ routines vs. failure to develop flexibility and initiative
C • • • • • • •
Auditory Integration Training (AIT) The Musical Ear Tomatis, Berard, Samonas, others Headphones FastForWord - proprietary Earobics – stripped down FFW The Listening Program – passive Why a C? Research issues, rule of 1/3’s
C Dietary Interventions • • • •
Gluten Free Casein Free Feingold (salicylate free) Ketogenic - esp. for intractible seizures Why a C? Mostly poorly researched, anecdotal
C Dogs and Dolphins • • • • • •
Affectively engaging - memorable Teach a child to fetch Research..anecdotal Expensive (dolphins), expensive over time (dogs) Untraining your therapy dog Unrealistic expectations of socialization
C Hyperbaric Oxygen • • • • •
The theory? Anecdotal Safe enough, done right Used a lot… Why a C? WE NEED MORE RESEARCH!
C Music Therapy • • • •
Lovely Interesting theories and procedures Engaging for many Why a C? Research is not clearly vetted.
C Vision Therapy • • • •
Maybe the person sees very differently Maybe change with eye exercises, prisms Anecdotal, rule of 1/3’s… Why a C? Research hotly disputed
C Vitamins/Nutritional Supplements • • • • • •
There are people who do not eat well Lots of theories Lots of articles in non-medical journals Lots of testimonials Lots of sales Why a C? Avg of B’s and D’s…TOO MANY CHARLATANS – hard to find reputable people
C Yeast Eradication Therapy • • • •
Theory… Labs that (always) find it… Lots of anecdotal reports of improvement C for relatively benign approach - Nystatin
D Oral Chelation • Wonderful anecdotes…many families are really certain it has helped • Why a D? Hard to do safely • Why a D? Theory keeps getting disproved
D Rapid Prompting Method • • • • • •
Typing for non-verbal people ‘Trapped inside’ Incredible stories Research issues Proprietary Don’t be shocked if it rises to a B…
D Secretin • • • •
Doesn’t work Mild side effects Expensive clinics Also oral treatment…
F Therapeutic Holding • Some similarities to good sensory OT • Once had a respectable following • Misused by many – some deaths
F IV Chelation • Dangerous • Theory keeps getting disproved
How to assess a therapy? • Birth of a therapy: lab? legitimate people developing it? Who is legitimate? • Guarantees of results are suspect • Follow the $ • Research: open sources, legitimate peer review, research method, or only unscreened anecdotes
Bottom Line Team Focus on Engagement • • • •
Organizes the intervention Pulls for individualized understanding Leads to developmental progress Other therapies become coherent sub-parts of the plan
Resources • • • •
RADY Autism Resource Guide ICDL.com Circlestretch.blogspot.com Book of the month: You’re Going to Love This Kid, by Paula Kluth. Excellent book on inclusion. • Book of the year: Great Kids, by Stanley Greenspan. Most recent summary of DIR® approach
References…. • Diagnostic Manual for Infancy and Early Childhood. Interdisciplinary Council on Developmental and Learning Disorders, 2005. • Fraiberg, S., Adelson. E., Shapiro, V. (1975). Ghosts in the nursery: A psychoanalytic approach to the problem of impaired infantmother relationships. JAACAP, 14, 387422.
References… • Greenspan, S. Infancy and Early Childhood: The Practice of Clinical Assessment and Intervention with Emotional and Developmental Challenges. 1992. International Universities Press. • Greenspan, S, DeGangi, G, Wieder, S. The Functional Emotional Assessment Scale (FEAS) for Infancy and Early Childhood: Clinical and Research Applications. 2001The Child with Special Needs: Encouraging Intellectual and Emotional Growth. International Universities Press, 1997. • Greenspan, S.I. and Wieder, S. Developmental Patterns and Outcomes in Infants and Children with Disorders in Relating and Communicating: A Chart Review of 200 Cases of Children with Autistic Spectrum Diagnoses. The Journal of Developmental and Learning Disorders. 1:87-141 (1997).
References…. • Greenspan, S. Building Healthy Minds: The Six Experiences that Create Intelligence and Emotional Growth in Babies and Young Children. Perseus Books. 1999. • Greenspan S. Greenspan Social-Emotional Growth Chart. San Antonio, TX: Harcourt Assessment; 2004. • Greenspan, S and Lewis, D, The Affect-based Language Curriculum (ABLC): An Intensive Program for Families Therapists and Teachers. 2nd Ed. Interdisciplinary Council on Developmental & Learning Disorders, 2005.
References…. • Greenspan, S, and Wieder, S. Engaging Autism: The Floortime Approach to Helping Children Relate, Communicate and Think. Perseus Books, 2006. • Greenspan, et al. Guidelines for early identification, screening, and clinical management of children with autism spectrum disorders. Pediatrics 121; 828-30 (2008). • Grossberg - Grossberg and Seidman - NEURAL DYNAMICS OF AUTISTIC BEHAVIORS: Cognitive, Emotional, and Timing Substrates. Psychol Rev 2006;113(3):483-525.
References…. • Greenspan, S. Great Kids: Helping Your Baby and Child Develop the Ten Essential Qualities for a Healthy, Happy Life. De Capo Press Books, Phildelphia, PA 2007. • Kluth, P. You’re Going to Love This Kid: Teaching Students with Autism in the Inclusive Classroom. Brookes Publishing Co., Baltimore, MD 2003.
References…. • Schore, A. N. (1994). Affect regulation and the origin of the self; The neurobiology of emotional development. Hillsdale, NJ: Erlbaum. • Shea V. A perspective on the research literature related to early intensive behavioral intervention (Lovaas) for young children with autism. Autism; 8; 349 –367 (2004). • Siegel, D. The Developing Mind: How Relationships and the Brain Interact to Shape Who We Are. Guilford Press, 2000.
References…. • Smalley, S, et al. Genetic Linkage of AttentionDeficit/Hyperactivity Disorder on Chromosome 16p13, in a Region Implicated in Autism. Am. J. Hum. Genet. 71; 959–963, (2002). • Smith T. Discrete trial training in the treatment of autism. Focus Autism Other Dev Disabl. 16; 86 – 92 (2001). • Solomon, R, et al. Pilot study of a parent training program for young children with autism. Autism; 11; 205–224 (2007).
References…. • Spitz, R. Hospitalism—An Inquiry Into the Genesis of Psychiatric Conditions in Early Childhood. Psychoanalytic Study of the Child ; 1; 53-74 (1945). • Stern, D. The Present Moment in Psychotherapy and Everyday Life. W.W. Norton and Company, New York, 2004. • Stieben, J. Assessing Behavioral and Neurophysiological Outcomes of Intensive DIR Intervention for Children with Autism. Poster slide: ICDL 11th Annual International Conference, November 9, 2007. • Stieben, J. Personal Communications, May 2008.
References‌. • Wieder, S, and Greenspan, S. 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. J Dev Learn Disord;9; 39-61 (2005).