APG-Media-2017-Saulnierga-autismplan.com/wp-content/uploads/2017/05/... · •EBP and Autism in the Schools National Research Council Educating Children with Autism Marcus Autism

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Autism and the Media:Distinguishing Between Fact & Fiction

Autism Conference & Expo of GeorgiaMay 4th, 2017

Celine A. Saulnier, PhDDirector of Research OperationsMarcus Autism Center, Children’s Healthcare of AtlantaAssociate Professor, Division of Autism & Related DisordersDepartment of Pediatrics, Emory University School of Medicine

2Marcus Autism Center

Disclosures

1. I receive author royalties from Wiley for the book, Essentials of Autism Spectrum Disorders, Evaluation and Assessment published in 2012

2. I receive author royalties from Pearson Assessments for the Vineland Adaptive Behavior Scales, Third Edition, published in June 2016


The “Diagnosis” of Autism Criteria for Autism Spectrum Disorder (299.0)Diagnostic & Statistical Manual, 5th Edition (DSM-5)

A. Persistent deficits in social communication and interactions across multiple contexts, as manifested by the following currently or by history:

1. Deficits in social-emotional reciprocity

2. Deficits in nonverbal communication behaviors used for social interaction

3. Deficits in developing, maintaining, and understanding relationships, ranging, e.g., from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers

Criteria for DSM-5 Autism Spectrum Disorder (299.0)

B. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following, currently or by history:

1. Stereotyped or repetitive speech, motor movements, or use of objects

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to sameness

3. Highly restricted, fixated interests

4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of behavior

Criteria for DSM-5 Autism Spectrum Disorder (299.0)

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning

E. Disturbances are not better explained by intellectual disability or global developmental delay.

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Severity Levels for ASD (299.0)

Level 1: Requiring Support

Level 2: Requiring Substantial Support

Level 3: Requiring Very Substantial Support


Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning


The Autism Spectrum

Levels of Cognitive Functioning

Cognitive Impairment

SeizuresChildhood Disintegrative Disorder

“High Functioning” Autism

Asperger Syndrome

PDD-NOS

Medical Comorbidities Psychiatric Comorbidities


Prevalence of Autism


The Rise in Prevalence of ASDwww.cdc.gov/ncbddd/autism


Why the Increase in Prevalence of ASD?§ Diagnostic substitution

§ Changes in diagnostic symptomatology – broadening of criteria over time

§ Better detection at both ends of the spectrum (i.e., low and high-functioning)

§ Growing awareness of condition: Increased Media Attention

§ Educational implications of label (autism = more services)

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Diagnostic Substitution


Increases in Media Attention


Increases in Celebrity Endorsement


Increases in TV & Movie Characterswith ASD

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Where Parents Seek Information about ASDRhoades, Scarpa, & Salley (BMC Pediatrics, 2007)

– Media: 71-73%

– Conferences/Workshops: 42%

– Other Parents: 42%

– Health-care Professionals: 15-20%

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What the General Public is Learning from the Media... If We Believed that Correlation = Causation


The Vaccine Debate The Vaccine Debate

§ Controversy over Wakefield article (Lancet, 1998)

§ LANCET RETRACTED ARTICLE 2/2/2010

§ Wakefield charged with over 30 counts of medical misconduct. UNETHICAL & UNVALIDATED STUDY

§ Limited data supporting a possible link to autism

§ >20 studies show no evidence of causal relationship between Mercury & Autism, Vaccines & Autism or Thimerosal & Autism

§ 12 with un-vaccinated comparison groups

§ Yet, rates of autism keep rising worldwide

§ Denmark (Madsen et al., 2003; Pediatrics)

§ Japan: autism rates increase despite MMR ban (e.g., Hornig, et al., 2008; D’Souza, Fombonne, & Ward, 2006; Taylor, et al., 1999)

VAXXED

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Source: Public Health England and the Health Protection Agency archive

Get Informed

Paul Offit, MDDirector, Vaccine Education Center, CHOP“I used to say that the tide would turn when children started to die. Well, children have started to die. So now I’ve changed it to ‘when enough children start to die.’Because obviously, we’re not there yet.”

Centers for Disease Control & Prevention:www.cdc.gov/ncbddd/autism/index.html

American Academy of Pediatrics:www.aap.org/advocacy/releases/autismparentfacts.htm

How to be well informed:

– Get information from peer-reviewed journals

– Search only legitimate, science-based websites

– Follow the experts (those that have been published in peer-reviewed journals)

– Be cautious of claims proposing known “causes” or “cures” for autism

– Just b/c it was on TV doesn’t mean it’s true!

Vaccines and Autism (youtube.com)

What Causes Autism????Genetics in Autism:

The more we learn, the more we need to know

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Genetics in Medicine, 2008

u “A thorough clinical genetics evaluation of patients with ASDs is estimated to result in an identified etiology in 30–40% of individuals.”

u “It is our contention that all patients with autism be offered a thorough diagnostic evaluation”

u Recommendation for a customized and tiered evaluation approach

The Need for Effective CommunicationAbout Science in ASD

“Then there’s the continuing reality that lay people in the community believe that

scientists want to do genetic research to eradicate autistic people. That may be the farthest thing from a researcher’s mind but

the fact that the public believes it is a disaster for researchers.”

--John Elder Robison, May 2014

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Self-Advocates & Neurodiversity


Benefits of Social Media...


Evidenced Based Practices

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Standards of “Best Practice”

National Autism Center• National Standards Project• EBP and Autism in the Schools

National Research CouncilEducating Children with Autism


NAC: Probable or Promising Evidenced-Based Practices (EBP)• Applied Behavior Analysis• Pivotal Response Treatment• Early Start Denver Model• SCERTS Model• Video modeling• Social Stories• Cognitive Behavioral

Therapy• Social scripts• Peer-mediated interventions• Parent training methods


Applied Behavior Analysis (ABA)


Applied Behavior Analysis

§ Rooted in Skinnerian Operant Conditioning§ Identify behaviors to replace or teach§ Break down concepts into achievable & understandable

components§ Teach through repetition and reinforcement until mastery § Teach new skills through explicit instruction§ Replace problematic behaviors with more appropriate ones§ Generalize and maintain learned skills


Early Research on ABA

• Ivar Lovaas conducted a clinical trial using Discrete Trial Training (DTT) for children with autism

• Treatment was intensive and early

• Results claimed that 48% of children achieved “normal functioning” post treatment

• Publicity caused a paradigm shift in treatment

• Parents advocating for up to 40-hours/week of one:oneintervention


Limitations of DTTSchreibman et al., 2015

• Children failed to generalize newly learned skills across contexts (i.e., environments, circumstances, & people)

• DTT led to avoidance and escape behaviors

• DTT produced prompt-dependency & limited spontaneous presentation of skills

• Cost prohibitive ($30,000-$60,000/year)• Focus on acquisition of skills rather than functional

application

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Controversies with ABA


Naturalistic Developmental BehavioralInterventions (NDBIs) (Schreibman et al., 2015)

• Emphasis on affectively engaged social exchanges for learning

• Intervention is implemented in natural settings (i.e. rather than table-top)

• Shared control between child and therapist/caregiver (rather than purely adult-directed)

• Utilizes natural contingencies and reinforcers

• Utilizes a variety of behavioral strategies to teach developmentally appropriate prerequisite skills


Developmental/Behavioral Approaches

• Pivotal Response Training (Koegel & Koegel, 2006)• Behavioral approach incorporating motivating reinforcers in

the natural environment• Early Start Denver Model (Smith, Rogers, & Dawson, 2006)

• Behavioral and developmental approach, using naturally reinforcing interactions between parents and children

• Hanen’s “More than Words” (Sussman, 1999)• Shaping functional communication through techniques like

expectant waiting• Early Social Interaction (Amy Wetherby)

• Parent-coaching model to enhance social engagement during everyday naturalistic activities

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Optimal Outcome

Savant Skills (Treffert, 2014, Journal of Autism & Developmental Disorders)

§ “Islands of Genius” in people with developmental disorders, CNS disorders/disease, autism, etc.

§ Most Common: Music, art, calendar calculation, math, mechanical/visual spatial skills

§ Less Common: language, sensory discrimination, athletics, outstanding knowledge in specific fields, computers, etc.

§ Approximately 1 in 10 people with autism have savant skills

§ Approximately 1 in 1,400 people with ID (without autism) have savant skills

§ ”not all autistic persons are savants, and not all savants are autistic”

Autism and Maladaptive Behavior

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Triggers for Maladaptive Behavior


Understanding “Maladaptive” Behaviors

BEHAVIOR = COMMUNICATION

§ Maladaptive behaviors should not be automatically seen as willful or malicious

§ Always ask WHY the child is behaving in some apparently maladaptive way

§ Maladaptive behaviors should be managed within the context of a comprehensive intervention program

§ Emphasis on disabilities contributing to undesirable behaviors

§ Management of anxiety, depression, rigidity, social inappropriateness


Are People with ASD Violent?


What the Media Says…

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Complimentary/Alternative Methods of Treatment (“CAM”)

Questionable/Limited Validity

• Gluten & Casein Free Diets

• Vitamin Therapy (e.g., B-12; Magnesium)

• RDI (Relationship Development Intervention)

• Rapid Prompting Method

• Animal-Assisted Therapies

• Neurofeedback

• Auditory Integration Training

• Listening Therapy

• Vision Therapies

Potentially Harmful

• Chelation

• Hyperbaric Oxygen Therapy

• DAN Protocol

• Detoxification of Heavy Metals

• Invasive & unnecessary GI procedures

• Extreme diets

• Secretin

• Ingesting parasites

• Packing Therapy

• Antibiotic Therapies

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Secretin

§ Sparked by media report of 3 cases (Horvath et al., 1998)

§ Endoscopy using intravenous secretin enfusion (GI hormone)

§ The most carefully studied alternative treatment in autism

§ Ironic considering that it gained so much popularity before it was scientifically scrutinized (Volkmar, 1999)

§ 1999-2004: 16 double blind/placebo controlled peer-review studies showing no significant effect

§ Phase III drug trials by Repligen have also failed to confirm effect (Repligen, 2004)


Hyperbaric Oxygen Therapy(Rossingnol et al., 2009)

• 1 randomized, double-blind, controlled study to date.

• 62 children with ASD ages 2-7 years received 40 hourly sessions of:

– 1.3 atm & 24% oxygen (Treatment Group)

– 1.03 atm & 21% oxygen (Control Group)

• Treatment group showed significant improvements:

– Receptive language

– Social interaction

– Eye contact

– Sensory/cognitive awareness

• Children > age 5 & with less symptom severity showed most improvements


Chelation

* Removal of toxic levels of heavy metals in the bloodstream (e.g., lead) DMSA (Dimercaptosuccinicacid) = commonly used chelating agent

* Currently no peer-reviewed publications showing this to be effective for mercury toxicity

* 3 deaths (2 children, 1 adult) from cardiac arrest while undergoing chelation treatment (Brown et al., 2006)

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Gluten-Free / Casein-Free Diets

• Many studies claiming to result in improved behavioral symptoms

– <10 are peer-reviewed

– 1 double-blind placebo controlled study showing no improvements (Elder et al., 2006)

• 8/15 parents unable to correctly distinguish between placebo and GC-free diets

• Possible risk-results of diet:

– Nutritional deficiencies, cost, & restricting an already restricted diet


Talking to Parents about CAM

• Parents’ beliefs about doctors’ skepticism = under/not reporting use of CAM

• Inform about empirically & non-empirically based treatments

• Warn about empty claims of “cures”

• Questions to ask:

» What is the cost to the family/child?

» What is the risk in removing child from empirically-based interventions?

» What are the inherent risks in the proposed treatment?

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Main Reasons to Use EBP

1. Empirical evidence separates approaches that work from approaches that are mere fantasy and hypothetical

2. Certifying agencies are increasingly requiring use of approaches that are evidence-based

» More vulnerable to lawsuits if don’t use EBP

3. Insurance companies may refuse to pay for non-EBP

4. Focus on CAM sends families awry:

» wastes valuable time

» can be risky or dangerous

» may create problems greater than original ASD symptoms


Take Home Messages

1. Autism is a neurodevelopmental disorder that emerges over the first few years of life

2. We do not fully understand the cause(s) of autism(s)

3. We do know that there is a strong genetic link

4. We do not fully understand gene-environment interactions

5. Autism & associated debilitating symptoms are treatable through developmental and behavioral interventions

6. Though we do not know a cure, there are certainly optimal outcomes

7. Correlation does not equal causation!

8. The plural of anecdote does not equal data!

Marcus Autism Center

Thank you!

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APG-Media-2017-Saulnierga-autismplan.com/wp-content/uploads/2017/05/... · •EBP and Autism in the Schools National Research Council Educating Children with Autism Marcus Autism