How do we decide

what to do for our kids?

Joshua D. Feder, MD
Momsfightingautism webinar May 3 2011
 Joshua D. Feder, M.D.

Director of Research, Graduate School

Interdisciplinary Council on Developmental and Learning
Disorders

Assistant Clinical Professor, Department of Psychiatry, UCSD

School of Medicine
 Disclosures

• ICDL – ‘1/4 time’ - teaching, research, advocacy

• NIMH/ Duke University – minimal – for time spent in

pharmacogenetic research activities
 Questions
• What does research tell us?
• What does clinical experience tell us?
• What interventions are right for each of our
kids and for our unique families?
• How do we organize them all into a real plan?
 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 - Secretin
- FastForWord - Sensory Integration/Sensory Processing
- DIR®/Floortime - Social Stories
- Hyperbaric Oxygen - Speech and Language Therapy
- Music Therapy - TEACCH
- Picture Exchange Communication - Anti-Yeast Therapy
System (PECS) - Dietary Interventions
-Pivotal Response Training - Vitamins/Nutritional Supplements
-Mixed Developmental-Behavioral -Medication for Treating Autistic
Approaches Symptoms
- Occupational Therapy - many more….
- Rapid Prompting Method
- Relationship Development Intervention
- SCERTS Model
 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
New Ideas – Necessary, yet Caveat Emptor

• We need them: complex problems require

complex, multipart interventions
• Every Idea Has Germ of Truth
• But when people become believers or
businessmen they may leave science and
judgment behind
• We need research & we need to use good
judgment
 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
 Informed Consent
• We deserve to know what is out there: don’t
let people hide it from you.
• We deserve to know the benefits and what
proof there is or isn’t for these benefits
• We deserve to know the risks
• So we we can make truly informed decisions
based on our own family culture and values
• Diagnosis
• Target Symptoms
• Treatment Protocol
• Alternative Treatments
• Results of No Treatment
• Side Effects
• FDA Labeling: ‘experimental’
• Consent & Assent
• Comments, Questions & Concerns: ‘track closely’

INFORMED CONSENT IS A PROCESS

 The research is always mixed
• Our kids are all different
• It might not be a good fit for the child or for
the family
• So we can’t just do what one study says
 Evidence Based Practice
• How to respond to uncertain circumstances
• While maintaining autonomy for families to
choose what they think is best
• Began in 1996 with Sackett
• Institute of Medicine of the National Academy
of Sciences adopted it in 2001.
 The beginning:
Evidence Based Medicine Based
Medicine
• Sackett, et. al. British Medical Journal
1996;312:71-72 (13 January)
• “the conscientious, explicit, and judicious
use of current best evidence in making
decisions about the care of individual
patients.”
 Evidence Based Practice:

• Adding the elements of family culture and values

• Opening up to all clinical interventions
• And placing it in the context of informed consent.
 Often Confused With:

• Evidence Based Intervention - actually synonymous

• Evidence Based Research – refers to research without clinical
judgment or family or informed consent
• Evidence Based Treatment – refers to research on specific
treatments, usually without clinical judgment or family or
informed consent
• Best Practices – refers to (self-)appointed panels of ‘experts’ –
usually clinical opinion, often without clear reference to a
process of rational thinking
 Why do we need EBP”
• Because our research is so far from perfect
• Because research often does not apply to
real people
• Because we need to use clinical judgment in
applying what we know
• Because families must retain the right to
(informed) choice in treatment
 The 3 Core Elements of EBP
as they relate to informed consent
 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

• Great new prospective research
• Circlestretch.blogspot.com
• ICDL.com
 D.I.R.- Heir to the BPS
(biopsychosocial) approach

• Developmental
• Individual Differences
• Relationship-based
 Developmental

• Emotion is the glue to cognition, learning, and

development (e.g. impact of post-partum
depression on the infant, etc.)
• Stages of social-emotional development
• The key to relating and learning
 Individual Differences
• Sensory: 5 external plus internal
• Motor: tone, core, planning
• Receptive communication: incl non-verbal!
• Expressive communication: incl non-verbal!
• Visual-spatial(so much of our usual brain power)
• Executive function (idea, plan, steps, execute, adapt)
 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.com
Organizes the entire intervention….
 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

• Research is mixed – two ‘approved’ drugs

• Lots of off label use, but that is the nature of the medical
field
• Can help a good plan work well
• Can’t make up for a bad plan
• Often takes a lot of thoughtful trials
• See Circlestretch.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

• It’s a more democratic version of behavioral

• Relevance still an issue at times
• Some initiative, but limited
• Lots of research
• B for relevance
 B
Mixed Developmental-Behavioral Approaches
Early Start Denver Model, Project ImPACT, BRIDGE…

•Early studies encouraging

•Hope for the ‘best of both’
•Mostly parent driven
•Most tend to be more goal driven rather than development
driven
•B for early in development and need for better attention to
reflective process, individual differences and child centering.
 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)

• B - 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’
• C, D, F - Rotating aides to avoid ‘dependence’; poor
communication or management in the team (usually
failing to adequately include parents and outside
clinicians)
 B
Relationship Development Intervention

• Setting up social problems to solve in thinking, relating, and

communicating
• Research is supportive but not direct (yet)
• Thinking about thought - makes explicit what we do not
usually think about. Can be helpful but takes time to process
in the moment
• B for awaiting more research
 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
(‘Communication’)
• This is a vital service
• Requires talented practitioners: attempts to ‘teach’
langiage behaviorally are, in my opinion, misguided
• Drill and kill can be top down (gets a C,D, or F)
• Communication before and beyond speech is critically
important: non-verbal cuing, engaging and flowing
• Repair of broken communication might be the single
most important concept in all of treatment
 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?
• Safe enough, done right
• Research is mixed at best
 C
Music Therapy

• Lovely
• Interesting theories and procedures
• Engaging for many
• 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…
• 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
Marijuana

• Kills hippocampal cells (memory)

• Inhibits initiation and motivation
• Predisposes to psychosis
• (Smoke: extremely carcinogenic)
 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
 Bottom Line
Create an Ongoing Process to Keep
Team Focus on Engagement

• Engagement organizes the intervention

• Repair becomes the golden moment
• Pulls for individualized understanding to make it happen more
• Leads to developmental progress, ever more complex
• All therapies become coherent sub-parts of the plan
• Critically important to meet regularly and problem solve
One way to organize it…
 Resources

• ICDL.com
• Circlestretch.com
• The Learning Tree, by Stanley Greenspan.
Blends all therapies together