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Tying It All Together: Practical Guidelines for Medical Professionals Who Interact with Families and Individuals Affected by Autism Presented by Linda H. Rammler, M.Ed., Ph.D., CESP UConn Center for Excellence in Developmental Disabilities (UCEDD) Education, Research, and Service

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Page 1: Tying It All Together: Practical Guidelines for Medical ... · Tying It All Together: Practical Guidelines for Medical Professionals Who Interact with Families and Individuals Affected

Tying It All Together:Practical Guidelines for Medical Professionals Who Interact with

Families and Individuals Affected by Autism

Presented by Linda H. Rammler, M.Ed., Ph.D., CESP UConn Center for Excellence in Developmental

Disabilities (UCEDD)Education, Research, and Service

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History of UCEDDs• Idea for UCEDDs originated from John F.

Kennedy’s Panel on ‘Mental Retardation’, which called for entities to address:

– Critical shortage of personnel– Need for research & statistical data– Role of numerous governmental

agencies– Shortage of facilities– Lack of coordination

• Programs known as UAFs (University Affiliated Facilities)

• Then UAPs (University Affiliated Programs)• Now UCEDDs (University Centers for

Excellence in Developmental Disabilities)

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Overview of the UCEDDs • Authorized by Federal Law: Developmental

Disabilities Assistance and Bill of Rights Act of 2000

The Purpose of the DD Act:“…to assure that individuals with developmental disabilities

and their families participate in the design of and have access to needed community services, individualized

supports, and other forms of assistance that promote self-determination, independence, productivity, integration

and inclusion in all facets of community life, through culturally competent programs [Section 101(b)]

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Interdisciplinary Training

Research

Dissemination

Community Service

Impact on People with DD

The Core Functions are the Building Blocks of the UCEDD

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CT UCEDD 2013- 2018

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Translation:• Separate is not equal.• Specialized supports can be embedded in natural

lives.• Valued life outcomes (“as independent as possible,”

“with support as needed”) are the same as for everyone else without disabilities

• EVERYONE can contribute/give back• EVERYONE can work (Employment First for ALL)• Applies to those with autism REGARDLESS OF

PERCEIVED LEVEL OF FUNCTIONING

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Legal Requirements of IDEAGreat resource for parents http://idea.ed.gov/Sec. 300.114 LRE requirements.• (a) General.• (2) Each public agency must ensure that--• (i) To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are nondisabled; and

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IDEA, cont.• (ii) Special classes, separate schooling, or other

removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”

• Section 504 of the federal Rehabilitation Act of 1973 and the ADA both support requirement of equal access /non-discrimination in all areas of life

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What are Valued Life Outcomes for ALL?

Zero Exclusion values and premises

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More valued life outcomes:

Neuro

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Look what’s possible:• By having high expectations• By thinking “as though there is no box”• By building on individual strengths, interests,

preferences• By not focusing on deficits and what the individual

cannot do• By using truly individualized person- and family-

centered approaches because one size does not fit all• By recognizing there can be a full range of SUPPORTS to

facilitate those valued life outcomes

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Employment Options

Video of Jacob E. working

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Meaningful Friendships through Inclusive Education

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Supported Daily Living• http://wtnh.com/2014/01/27/high-tech-homes-

for-the-disabled/

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Recap of Prior Webinarsin this Series

1. An Autism Primer for the PCP: What to Expect, When to Refer

2. Genetics & Autism Spectrum Disorder: What PCPs Need to Know

3. Psychopharmacology of Autism Spectrum Disorder

4. Evidence-based Practices and Treatments for Children with Autism Spectrum Disorder

5. Transition from Pediatric to Adult Health Care –Challenges for Youth with Autism

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An Autism Primer for the PCP: What to Expect, When to Refer Wednesday, November 9th - 12:10 to 1:00PM (PART 1 of 6 part series) John Pellegano

• CDC 1 in 68 = several in every CT pediatric practice • Diagnosis ≠ WYSIWYG• Commonalities = basis for diagnosis but in terms of

interventions, “If you’ve met one person with autism, you’ve met one person with autism” (Dr. Stephen Shore, autistic professor, Adelphi University)

• Definitely PCP’s role to refer for diagnosis and intervention to ameliorate effects

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Genetics & Autism Spectrum Disorder: What PCPs Need to Know Wednesday, January 11th - 12:10 to 1:00PM (PART 2 of 6 part series) Rebecca Muhle

• “…genetic studies have illuminated the genetic architecture underlying autism spectrum disorder and are an invaluable boon to the scientific research community.”

• Yes, there is an invaluable “… role of the community practitioner in communicating the importance of genetic testing and the relevance of particular genetic variants to patients and families.”

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Psychopharmacology of Autism Spectrum Disorder Wed., March 8th 12:10 –1:00PM (PART 3 of 6 part series)

Chris McDougle• Many behavioral correlates of ASD (especially, e.g.,

hyperactivity/impulsivity; aggression, self-injurious behavior and severe tantrums; sleep disorders) interfere with individual’s and family’s quality of life

• Some medications are useful for treating associated target symptoms

• No Rx = treatment for ASD• Medications have potential side effects

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Evidence-based Practices and Treatments for Children with Autism Spectrum Disorder.

Wednesday, March 22nd - 12:10 to 1:00PM(PART 4 of 6 part series) Brian Reichow

• So much information today requires careful syntheses of best practices

• Findings from multiple meta-analyses and systematic reviews as a framework for using evidence-based practice to inform decision making is useful to interventionists

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Transition from Pediatric to Adult Health Care –Challenges for Youth with Autism Wednesday, April

5th - 12:10 to 1:00PM (PART 5 of 6 part series) Craig Shramm

• Annually, approximately 66,000 youth with ASD will turn 18 yrs of age

• Child w/ASD grow up to be adults with ASD • ~50% individuals with ASD have a major coexisting

condition that requires regular medical attention.• Need coordinated health care transition provided w/o

interruption• Adult services are not mandated

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Practical Guidelines for Talking about ASDs to Families and Individuals

• “Why do they do that? Because they have autism. Why do they have autism? Because they do that” tautology (Donnellan, 1987)

• Complex neurological underpinnings of ASDs = not showing ≠ not knowing or understanding (Courchesne, Meilleur, Poulin-Lord, Dawson, & Soulières, 2015).

• IQ tests underestimate autistic intelligence (Nader, Courchesne, Dawson, Soulières, 2016)

• “MACS” = differences in Movement, Anxiety, (social and verbal) Communication, Sensory brain systems (Rammler, 2009, 2010)

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Practical Guidelines for Talking about ASDs, cont.

The “M” in MACS• Movement differences and context = severity of

ASD presentation • Classic autism = greater motoric involvement

(Bodison & MostofskyIn, 2014)• >25,000 Google Scholar references re: autism +

Movement

(Movement, Anxiety, Communication, Sensory Differences = ASDs)

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Practical Guidelines for Talking about ASDs, cont.

The “A” in MACS• >32,000 Google Scholar references re: autism + Anxiety• Anxiety in ASD v. in neurotypical:

• Differences in structure -- e.g., amygdala, other limbic suborgans (Tottenham et al, 2014; White et al, 2014)

• Differences in function -- e.g., enhanced cortisol response (Spratt et al, 2012; White et al, 2014)

(Movement, Anxiety, Communication, Sensory Differences = ASDs)

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Practical Guidelines for Talking about ASDs, cont.

The “C” in MACS• Communication challenges in language use

(receptive/expressive, verbal/nonverbal, social interactions)

• Extensive lit review (Romski, Sevcik, Barton-Hulsey, & Whitmore, 2015) re: language:

– “substantial support that early AAC intervention enhances a child ’s communication and language development… for children 3 years old and under”

– Does NOT prevent but enhances any possible oral language (ASHA)

(Movement, Anxiety, Communication, Sensory

Differences = ASDs)

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Practical Guidelines for Talking about ASDs, cont.

The “S” in MACS• Wide range of Sensory challenges differentially affect

ASD behavior (Baker, Lane, Angley, & Young, 2008)• Self-reports of many adult autistics repetitive,

stereotypy, other behaviors = Sensory regulation OR painful sensory input (e.g., Grandin, 2011; Robison, 2008)

• Primary question re: interventions = How to alleviate, compensate for, learn “appropriate” ways to self-manage MACS differences AND celebrate neurodiversity?

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Practical Guidelines for Talking about ASDs, cont.

• Ethics issues (e.g., educators forbidden from recommending evals for meds)

• Advocates less interested in causation than ways to improve quality of life (ASAN, 2014)

• Inherited traits not always welcome news (Abramson et al, 1992)

• Genomic research has VERY promising implications for short-cutting which MACS interventions may work better with which individuals but not there yet

• Pharmaceutical interventions can be helpful to facilitate some individuals’ full access to and benefit from behavioral interventions

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What Families Need to Know

Some basic premises:• Naturalistic settings to facilitate generalization• Nondisabled peers as role models/to mediate

instruction• Caution around “fads” although common sense (e.g.,

elimination diet if apparent food sensitivities v. automatic GF/CF)

• Prohibit restraint/seclusion-time out/other aversives; replace with “Positive Behavior Supports”

• Self-determination/independence begins ASAP

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What families need to know, cont. • National Professional Development Center on

Autism Spectrum Disorder as source for currently recognized EBPs http://autismpdc.fpg.unc.edu/

• NPDC names 27 focused interventions considered EBPs as of 2-11

• Unless knowledgeable about implementing a range of these with fidelity, should not be making overall recommendations

• The National Clearinghouse on Autism Evidence and Practice (NCAEP) now reviewing 2012-2017 intervention research http://ncaep.fpg.unc.edu/

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What families need to know, cont. • Team with professionals to ID/use EBPs that best fit their

child’s MACS profiles, e.g.,– Time delay for students needing to motor plan– Visual supports to decrease anxiety– PECS for communication– Self-management for sensory– Assistive technology to increase independence

• Partnership b/n ALL professionals (interdisciplinary) and family

• May have to direct professionals to resources

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What families need to know, cont.

• Must advocate for recognition of child’s strengths, interests, preferences, what works, what doesn’t work

• Okay to ask for help in advocacy• How to build their advocacy skill set? (e.g., CTFSN,

UCEDD, CPAC, Partners in Policymaking)• Parents are equal members of Planning and

Placement Teams. • Schools won’t accept medical Rx

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What families need to know, cont. • Should not be “prescribed” just one approach • “ABA” varies according to values, approach of

professional. What is “bad ABA”?• 30-40 hours takes away from family life, parent

involvement, learning in context, sibling play, etc.• Many (good) EBPs/programmatic approaches

incorporate behavioral principles, e.g., – positive reinforcement from shared attention– mutual enjoyment, laughter, discovery/play– Real life teaches flexibility

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What families need to know, cont.• Start early with vision of a positive future (a/k/a valued

life outcomes)• Base on child’s strengths, interest, preferences• Examples of recommendations received that address

long-term needs: – Should have a communication system ASAP to learn

to express wants and needs to others” – Will benefit from play dates with non-disabled

peers – Needs to learn skills in settings in which skills will be

used

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What families need to know, cont.• Important to make/sustain community connections

(e.g., extended family, neighbors, faith community, employers, friends)

• Live typical daily lives as much as possible• Expose child to community/expose community to

child• Think about/describe what help they need:

– Goods/services– information/discovery/assistance with navigation– networking and connecting (UMKC UCEDD

Charting the Life Course)

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Guidelines for Supporting families on their journey

• Tailor message to individual child and family • Sensitive/respectful • Thoughtful process • Take extra time• Understandable/native language• Check for understanding• Answer family questions• Reduce additional stressors

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Supporting Families in Using Evidence-Based Practices in Natural Settings sets stage for

future Quality of Life

(c.f. Schriebman et al, 2015)

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Supporting families, cont.

• Sense of urgency • Shorter wait between referral + diagnosis = >

satisfaction (Goin-Kochel, Mackintosh, & Myers, 2006).

• Fewer number of different professionals = > satisfaction (op cit)

• Focus on the child and his/her individuality, not ASD label (Hodge, 2005).

• “Labeling a child with ASD can define the entirety of the child” (op cit)

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Supporting families, cont.

Language and tone counts (UConn UCEDD, 2013)• Avoid prognosis of “can’t” or “will never”• Medical terms (e.g., “co-morbid”) can terrify• “Concerns” v. “worries,” “challenges” v. “deficits”• Express hope/hopeful outcomes• People v. identity first languageGUIDELINE FOR BOTTOM LINE MESSAGE TO FAMILIES:

Enjoy this beautiful and unique person!Corollary: There is much that can be done to facilitate

ease of his/her functioning in neurotypical world

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Thank you!Please don’t forget to fill out your evaluations.

My contact information:

Linda Rammler, M.Ed., Ph.D., CESPTechnical Assistance and Community Training

UConn Center for Excellence in Developmental Disabilities 263 Farmington Avenue, Farmington, CT 06030 | MC6222

Office: 860.679.1585 | [email protected]