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8/6/2019 How Do We Decide What to Do for Our Kids_ Moms Fighting Autism Talk for May 3 2011
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How do we decide
what to do for our kids?
Joshua D. Feder, MDMomsfightingautism webinar May 3 2011
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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
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Disclosures
ICDL 1/4 time - teaching, research, advocacy
NIMH/ Duke University minimal for time spent in
pharmacogenetic research activities
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Questions
What does research tell us?
What does clinical experience tell us?
What interventions are right for each of ourkids and for our unique families?
How do we organize them all into a real plan?
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Wide Array of Symptoms
Activity
Attention, focus, distractibility
Anxiety, panic, fearsCognition
Communication & Language
Depression, poor self esteem
Mood Instability (aggression)
Motor Planning, motor tone
O/C, rigidity, Perseverative
Reciprocal interactionSensory Sensitivity
Repetitive movements
Tics
Safety!
Sleep
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Dizzying Numbers of Therapies...
- Discrete Trial
- FastForWord
- DIR/Floortime
- Hyperbaric Oxygen
- Music Therapy
- Picture Exchange CommunicationSystem (PECS)
-Pivotal Response Training
-Mixed Developmental-Behavioral
Approaches
- 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.
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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
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Recent twists
Biomedical - supplements, diets, etc.
Sensory integration recognition of the huge
range of individual differences
Relationship based interventions spun from
infant mental health
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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
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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
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Informed Consent
We deserve to know what is out there: dont
let people hide it from you.
We deserve to know the benefits and what
proof there is or isnt 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
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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
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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 cant just do what one study says
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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.
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The beginning:
Evidence Based Medicine Based
Medicine
Sackett, et. al. British Medical Journal1996;312:71-72 (13 January)
the conscientious, explicit, and judicioususe of current best evidence in makingdecisions about the care of individual
patients.
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Adding the elements of family culture and values
Opening up to all clinical interventions
And placing it in the context of informed consent.
Evidence Based Practice:
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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 ofexperts
usually clinical opinion, often without clear reference to aprocess of rational thinking
Often Confused With:
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Because our research is so far from perfect
Because research often does not apply toreal people
Because we need to use clinical judgment inapplying what we know
Because families must retain the right to(informed) choice in treatment
Why do we need EBP
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The 3 Core Elements of EBP
as they relate to informed consent
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The Many Therapies
Feders Confidence in a Treatment:
A Lots of prospective data and clearly relevant to child. Fewor no significant side effects.
B Lots of data but not always relevant, or data is limitedbut supportive, relatively safe when done well
C Mixed data, and/ or reasonable theory, not necessarilydangerous
D No positive data, and/ or not enough data, and/ orunclear theory, and/ or only unscreened anecdotal data,and/ or safety concerns, but probably some people whohave apparently clearly benefitted
F Negative data, and / or significant evidence of danger
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A
None
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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).
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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 attentionto the surround, e.g., talkative intellectualizing
person who does not change
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B
DIR/Floortime
Makes sense, I think it works great Great new prospective research
Circlestretch.blogspot.com
ICDL.com
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D.I.R.- Heir to the BPS
(biopsychosocial) approach
Developmental Individual Differences
Relationship-based
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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
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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)
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Relationship Based:
Co-regulation
Engagement Flow
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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
http://www.circlestretch.blogspot.com/http://www.circlestretch.blogspot.com/8/6/2019 How Do We Decide What to Do for Our Kids_ Moms Fighting Autism Talk for May 3 2011
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Organizes the entire intervention.
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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 israre
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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
Cant make up for a bad plan
Often takes a lot of thoughtful trials
See Circlestretch.com
B for lack of reliable efficacy, side effects
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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
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B
Pivotal Response Training
Its a more democratic version of behavioral
Relevance still an issue at times
Some initiative, but limited
Lots of research
B for relevance
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B
Mixed Developmental-Behavioral ApproachesEarly Start Denver Model, Project ImPACT, BRIDGE
Early studies encouragingHope 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.
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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
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B
One on One Aides
(para-professionals)
B - Good, engaging people who can support developmentand facilitate interactions are rare gems and can be thekey reason a child improves.
Over-dependence vs. Anne Sullivan
C, D, F - Rotating aides to avoid dependence; poorcommunication or management in the team (usuallyfailing to adequately include parents and outsideclinicians)
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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
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B
SCERTS
(Social Communication, Emotional Regulation
and Transactional Support)
Does all that
Less attention to family dynamics Less attention to individual differences
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B
Social Stories
Teaching flexibility
Usually we dox, sometimes yhappens instead.Thats ok.
A small and useful piece of a bigger pie
Beyond this, there is a great, Talmudic-inspiredschema: its great when things happen the waywe expected
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B
Special Day Class
Aka resource room SDC may no longer
exist
More staff to students
Limiting socially Lower expectations
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B
Speech and Language Therapy
(Communication) This is a vital service
Requires talented practitioners: attempts to teachlangiage 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
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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?
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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
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B
TEACCH(Treatment and Education of AutisticCommunication Handicapped Children)
Structured teaching really works for learningtasks and routines
Visual models and schedules are usually very
helpful for these persons Comforting routines vs. failure to develop
flexibility and initiative
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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 1/3s
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C
Dietary Interventions
Gluten Free Casein Free
Feingold (salicylate free)
Ketogenic - esp. for intractible seizures
Why a C? Mostly poorly researched, anecdotal
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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
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C
Hyperbaric Oxygen
The theory?
Safe enough, done right
Research is mixed at best
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C
Music Therapy
Lovely
Interesting theories and procedures
Engaging for many
Research is not clearly vetted.
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C
Vision Therapy
Maybe the person sees very differently
Maybe change with eye exercises, prisms
Anecdotal, rule of 1/3s
Research hotly disputed
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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 Bs and DsTOO MANY CHARLATANS
hard to find reputable people
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C
Yeast Eradication Therapy
Theory
Labs that (always) find it
Lots of anecdotal reports of improvement
C for relatively benign approach - Nystatin
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D
Oral Chelation
Wonderful anecdotesmany families are
really certain it has helped
Why a D? Hard to do safely
Why a D? Theory keeps getting disproved
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D
Rapid Prompting Method
Typing for non-verbal people
Trapped inside
Incredible stories
Research issues
Proprietary
Dont be shocked if it rises to a B
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D
Secretin
Doesnt work
Mild side effects
Expensive clinics
Also oral treatment
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F
Marijuana
Kills hippocampal cells (memory)
Inhibits initiation and motivation
Predisposes to psychosis
(Smoke: extremely carcinogenic)
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F
Therapeutic Holding
Some similarities to good sensory OT
Once had a respectable following
Misused by many some deaths
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F
IV Chelation
Dangerous
Theory keeps getting disproved
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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
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One way to organize it
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Resources
ICDL.com
Circlestretch.com
The Learning Tree, by Stanley Greenspan.
Blends all therapies together