How Do We Decide What to Do for Our Kids_ Moms Fighting Autism Talk for May 3 2011

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/


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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

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How Do We Decide What to Do for Our Kids_ Moms Fighting Autism Talk for May 3 2011

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