Issues to Consider in Evaluating and Treating Preschool through School-Aged Children with ASD

CHERYL RHODES CHERYL KLAIMAN SHANNON HEWETT

April 27, 2017

Some information in this presentation was published in: ‣ Peacock, G and Rhodes, C (2014). Integrating Systems to Care

for Individuals with Developmental Disabilities Across the Lifespan. In: Rubin and Crocker 3rd Edition: Health Care for people with intellectual and developmental disabilities across the lifespan edited by I Leslie Rubin, Joav Merrick, Donald E Greydanus and Dilip R Patel Dordrecht: Springer, 2016.

‣ Peacock G, Foster J, and Rhodes C (2013). The Clinician Advocate: Supporting Children with Disabilities and their Families. In Glascoe FP, Marks KP, Poon JK, Macias MM (Eds). Identifying and Addressing Developmental-Behavioral Problems: A Practical Guide for Medical and Non-Medical Professionals, Trainees, Researchers and Advocates. Nashville, Tennessee: PEDStest.com, LLC, 2013

Acknowledgement

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Learning Objectives

‣To understand the impact of autism on the family and society

‣Describe ASD treatments

‣Reflect on the role of clinicians to support and empower families of children with autism

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Defining Autism Spectrum Disorder

• Autism is a neurodevelopmental disorder(s) of unknown genetic origin where symptoms unfold over the first few years of life & include the following:

• Impairments in socialization • Impairments in language &

communication • Development of restricted interests,

repetitive & perseverative behaviors, and need for sameness

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Epidemiological Statistics www.cdc.gov/ncbddd/autism

• Prevalence Risk for Subsequent Siblings: 18-20% • Male-Female Ratio: 1 in 54 boys

• Broad Spectrum: 4:1 • Prototypical Autism: 2:1 • High Functioning ASD: 8-10:1

• Cognitive Impairment: 38% • Seizures: 25% • Median age of diagnosis: 4 years, 6 months

• Disadvantaged populations much older ~ 7-8 years

• 80% of parents express concern by 24 months • ASD can be reliably diagnosed by 18-24 months

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Why is it Important to Know About Autism?

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Eye Tracking Studies in ASD Klin, Jones, Schultz, Volkmar, & Cohen, 2002 American Journal of Psychiatry

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Toddler Eye Tracking Studies Klin et al., Nature, 2009; Jones, Carr, & Klin, Arch Gen Psych, 2008)

Typically Developing Toddler Toddler with Autism

Children with ASD relative to Typically-Developing Norms

TD eyes ASD eyes

per

cent

fixa

tion

mean 95% CI

age (months) ASD, N=11, male, 747 trials TD, N=25, male, 1637 trials

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Eye Fixation

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What We Need To Be Aware Of • Understanding of ASD continues to evolve • The need to evaluate and select from long list of

treatment options can be daunting for all of us – parents, educators, and health professionals

• Good news – information is available to help us focus on those interventions with evidence of effectiveness

• Consider the following: • We expect our health professionals to

recommend medications or medical interventions that meet a high standard of evidence based on sufficient research findings

• We should have equally high expectations for our educational and behavioral specialists who serve children with ASD

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Importance of Intervention

• The lifetime costs associated with ASD are high ($2.4 million per individual – Buescher, 2014)

• We can reduce these costs by choosing and providing treatments that have evidence of effectiveness

• It is NOT possible to be experts in all available treatments

• We CAN however, focus our attention and resources on those treatments which research has shown to be effective

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Evidence-Based Intervention Practices for ASD ‣ National Autism Center • National Standards Project • EBP and Autism in the Schools

National Research Council Educating Children with Autism

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National Research Council Characteristics of Effective Programs

• Intervention begins early

• Intervention is intensive in hours

• Families are actively involved

• Highly trained staff specialized in autism

• Ongoing objective assessment of progress

• Systematic curricula

• Highly supportive environments

• Focus on communication

• Research based treatments that plan for generalization & maintenance

• IEP’s necessary

• Transitions from preschool to school to adulthood planned and supported

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Importance of EBT: Beware of snake-oil salesmen!

4 main reasons to recommend EBT

• Empirical evidence separates approaches that work from approaches that are mere fantasy and hyper

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

• More vulnerable to lawsuits if don’t use EBT

• Insurance companies refusing to pay for non-EBT

• Wastes valuable time, can be risky or dangerous, may create problems greater than original ASD symptoms

Established EBP • Behavioral Interventions

(i.e., ABA, NDBI) • Cognitive Behavioral

Intervention Package • Comprehensive Behavioral

Treatment for Young Children

• Language Training (Production)

• Modeling • Natural Teaching

Strategies

• Parent Training • Peer Training Package • Pivotal Response Training • Schedules • Scripting • Self-Management • Social Skills Package • Story-based Intervention

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Emerging Interventions • Augmentative and Alternative

Communication Devices

• Developmental Relationship-based Treatment

• Exercise

• Exposure Package

• Functional Communication Training

• Imitation-based Intervention

• Initiation Training

• Language Training (Production & Understanding)

• Massage Therapy

• Multi-component Package

• Music Therapy

• Picture Exchange Communication System

• Reductive Package

• Sign Instruction

• Social Communication Intervention

• Structured Teaching

• Technology-based Intervention

• Theory of Mind Training

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Un-established Interventions

• Animal-assisted Therapy • Auditory Integration

Training • Concept Mapping • DIR/Floor Time • Facilitated

Communication • Gluten-free/Casein-free

diet • Movement-based

Intervention

• SENSE Theatre Intervention

• Sensory Intervention Package

• Shock Therapy • Social Behavioral

Learning Strategy • Social Cognition

Intervention • Social Thinking

Intervention

Receiving an Autism Diagnosis New language, new learning, new skills, new life

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“It's not easy to hear the news that your child has autism, and realize that your life

will be utterly different than you had expected it to be.”

-Autism Speaks

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Initial Diagnosis

At the time of diagnosis, parents have two concerns: • What can we do to help our child?

• What is the prognosis?

‣ I was confused and scared and didn’t know what to do.

‣Parents need to learn skills and strategies in many areas for long-term effectiveness • Advocacy • Communication • Maximize financial resources • Remove roadblocks to accessing services • Capitalize on strengths and interests

What Can We Do to Help Our Child?

‣We just don’t know what to do next. Our recent diagnosis left us feeling a bit helpless and overwhelmed.

‣We worry about what will happen to our child if we can’t get him the help he needs.

‣ Immediate and long-term challenges • Educational services • Identifying resources • Optimizing opportunities for success • Realizing personal goals (child and family)

What will happen to our child?

• “I had a sense something was wrong, but when I was told it was autism, I wasn’t sure what it meant. I went home and started looking on the internet but ended up more confused.”

• “We worry what our family and friends will say and how they will treat our son.”

• Balancing individual and family needs • Caring for the caregivers

◦ Respite ◦ Sibling support

‣ Transitions and futures planning Educational, medical, financial

New Questions, Concerns, and Challenges

Receiving an Autism Diagnosis A Parent’s Perspective

The part I really haven’t talked about

… that no one really warned me about, is the emotional side of this. Wanting others to see just how amazing and awesome you know your kid is, but realizing that some only see what they deem as “wrong” with him. The feeling of helplessness, and loneliness… because lets be real, most of my mom friends have no clue what it’s like. Wanting so bad for your baby to communicate their feelings, or why they are upset. Not being able to understand why your toddler can name the objects around the room, knows his alphabet, numbers and colors, but can’t tell you he loves you in words. There is a little bit of a grief process that happens. One that I didn’t expect. Used with permission Renee Britt http://reneebritt.com/?p=1824

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TJ Today • TJ is six years and in

kindergarten now.

• As time passes, we celebrate new victories and milestones and we are also faced with new challenges.

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Self-Contained Classroom • TJ has been in a self-contained classroom for Pre-K

and Kindergarten

• Created to help foster enhanced support for students with special needs or specific difficulties

• For TJ, this type of classroom provides a more positive and supportive environment for academic, personal, and even social development

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Great Special Needs Program • Great teachers and staff who use Applied Behavior Analysis

• Teachers have helped him increase communication and speech

by using the Picture Exchange Communication System (PECS)

• With the PECS protocol, functional verbal skills are taught using prompting and reinforcement strategies that will lead to independent communication

• TJ is now speaking in sentences for the first time ever!

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Things I had Wished I had Known • How long the road to diagnosis would be

• To concentrate on the quality of treatment over the quantity of

treatments

• How to find effective treatments

• That I was going to have to be SUPER organized

• That I was going to have to get tough and be an advocate for my child

• That there were people that I could turn to for advice/assistance

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Things I Am Glad I DIDN’T Know • That TJ may become aggressive

• That TJ may begin to “stim”

• That TJ may develop self-injurious behaviors

• That it may be difficult to toilet train TJ

• That EVERYTHING would be a battle!!!

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Systems of Care Navigating Complex Systems

Policy

Legal

Care and Support

Individual and Family

Fig 1 Ensuring Family-Centered Care Through Connected Systems © 2014

Diagnosis, Intervention, Treatment, Support, Access

Education, Medical, Behavioral Health, Funding, Employment, Transition, Recreation, Social, Housing

Legislation and Legal protections (ADA, IDEA)

Governmental/ Professional Oversight and protection

Connected Systems

Categories of Services and Supports • Define needs and abilities (diagnosis, evaluation

and assessment)

• Provide treatment, intervention and education (direct services, consultation, training, etc.)

• Give care and support (waivers, respite, support groups, transition and financial planning, etc.)

• Advocacy and protection through legislation and health and disability policy action

Care and Support

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•Education

•Medical

•Behavioral Health

•Funding •Transition

•Social

•Vocational training & Employment •Recreation

•Housing

Legal • Legislation

◦ Insurance mandates for autism services (32 states) ◦ State mandated insurance coverage (i.e., Ava’s Law)

• Legal protections

• Access ◦ Community Access - ADA ◦ Education – IDEA

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Policy • Governmental and Professional Oversight and Protection

◦ CDC – Autism surveillance, pediatric emergency preparedness ◦ EPA

• Children’s Environmental Health • PEHSU (Pediatric Environmental Health Specialty Unit)

◦ Workplace discrimination and harassment • Disability is 1 of 5 protected categories • Age, race, religion, gender, disability

• Professional Association Guidelines and Policy Statements (Pediatrics, Psychology, Psychiatry)

• AAP - Developmental surveillance, autism screening, medical home for children with autism/DD, vaccinations

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How to Inform Parents

TALK TO PARENTS! • 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?

Family Support and Family Quality of Life

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Family Support: Definition Services and supports, formal and informal, that help strengthen and enhance the family’s ability to thrive while caring for and supporting their children with autism. Georgia Autism Plan, 2013, p.12.

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Family Support: Quality Indicators • Families have access to comprehensive,

flexible, and family-centered supports, such as support groups, parent training and education, respite, and after-school care.

• Supports reflect family culture, needs, values, and preferences.

• Family supports assist the family in accessing both formal and informal supports in the broader community.

Georgia Autism Plan, 2013, p.12.

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Family Quality of Life Indicators • Competence: child behavior, independence, social and

play skills, participation in routines, communication. • Knowledge: parent information and resources

◦ Our family’s knowledge of what to do when our child engages in difficult behavior

• Alliances: family socializing with others ◦ Our family’s ability to take our child on routine errands

◦ Our family’s participation in community events and activities

‣ Cohesion: Communication among family members ‣ Well-being: Access to healthcare, financial security,

overall health

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McWilliam, R.A., & Hornstein, S. (2008). Measuring Family Quality of Life in Families of Children with Autism Spectrum Disorders.

Advocating for Children with ASD

Parents and Professionals

Advocacy Roles for Professionals • Individual activities with a child and family o connect a family to a community program, resource or funding source

• Local activities within the community to raise awareness o serve on local boards /resource to community programs o help with community projects

• State or federal level activities o state chapters of national professional associations and autism organizations o federal legislative action AAP Department of Federal Affairs, AUCD Action Center and AMCHP Action Agenda

Peacock, G, Foster, J, and Rhodes, C. (2013)

Empower Families to… • Have knowledge about a variety of systems

• Identify services critical to address current needs (on-going process)

• Advocate for access to appropriate services and utilize systems in effective ways

• Experience a level of competency, resilience and perseverance that supports families and individuals to become effective advocates, self-advocates, mentors and leaders for change.

Peacock and Rhodes, 2014

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Action Steps for Professionals • Know community referral sites for diagnostic

and intervention services and how to refer

• Provide guidance to families to help them anticipate and prepare for educational and medical transitions

• Encourage families to contact local chapters of family support and advocacy organizations for families of children with ASD

Action Steps for Professionals • Help children and families stay engaged in

their community by advocating for access to local programs

• Understand eligibility and application process for financial assistance programs and encourage families to apply for available benefits

• Stay informed about legislation that impacts child with autism and their families

To be effective in helping their child with ASD parents can: • Gain knowledge and skills • Learn about parent advocacy programs and resources • Develop competency as an advocate for their child • Resource: Beyond IEPs: Eight Ways Parents Can Help Advocate for Children with Autism https://www.autismspeaks.org/docs/family_services_docs/BeyondIEP_s.pdf

Action Steps for Parents

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Take Home Messages • We can reliably diagnose ASD by age 2 in clinically referred

samples – but diagnostic validity & stability is more questionable for younger siblings in multiplex families

• Both technology-based and clinically-based measures allow us to improve upon detecting risk for ASD in the first year of life

• Clinicians need to be well informed about risk factors for ASD in order to best inform parents/caregivers about next steps

• Clinicians need to be sensitive to how risk is communicated to parents (esp. to parents who already have a child with ASD)

• Children need to receive multiple evaluations across development to assess and re-assess developmental and diagnostic profiles

• Early and intensive intervention is associated with optimal outcome

• Recognize that families will continue to seek tools and strategies to be able meet changing needs for support, trusted resources and accurate information over time

• Identify and build on family strengths Living with ASD = “climbing Mt. Autism”

• Help families anticipate and prepare for transitions

• Empower families with skills and knowledge

• Join with families and together become change agents who will transform the autism landscape for better tomorrows.

Final Thoughts

Q&A

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