Pediatrics Grand Rounds 22 February 2013

University of Texas Health Science  Center at San Antonio

Learner Outcomes ¾ Recognize, and understand distinctions between,

disorders that make up the autism spectrum? ¾ Understand how challenges related to executive

functioning, theory of mind, and anxiety affect behavior, and perpetuate myths about autism spectrum disorders ¾ Recognize higher education as an option for this

population as they transition into adulthood, and discuss best practice strategies for support

The Evolution Of ASDs ()

Myths Regarding ASD

y Myth # 1: Autism spectrum disorders are rare, easily

recognized, and easy to distinguish

y y y y

Prevalence in 1985: 4-5:10,000 Prevalence in 2007: 1:150 Prevalence in 2009: 1: 110 Prevalence in 2012: 1:88 ¾

¾ ¾

y y

Autistic Disorder y Characterized by: ~ Qualitative impairment in social interaction, often manifested through marked impairment in the use of nonverbal social behavior, failure to develop peer relationships appropriate to developmental level, a lack of social or emotional reciprocity ~Q Qualitative impairments p in communication,, often manifested through delay in (or lack of) spoken language, marked impairment in ability to sustain conversation with others, stereotyped and repetitive use of language and lack of varied, spontaneous makebelieve play at a developmental level ~ Restricted, repetitive, and stereotyped patterns of behavior, interests and activities ~Delays or abnormal functioning with onset prior to age 3 in social interaction, language, or symbolic play

Better diagnostic abilities, understanding of the condition, possible link to environmental factors Higher prevalence reported in males; some suggest female children are able to hide challenges easier than male children in early development Early intervention recognized as key to successful outcomes

Many of the characteristics of ASD can be "masked" More and more teens with ASD are seeking a college experience, a concept that was very rare even 10 years ago

Asperger’s Disorder y Characterized by: ~ Qualitative impairment in social interaction, manifested through marked impairment in the use of multiple nonverbal behaviors, failure to develop peer relationships at a developmental level, lack of spontaneity in seeking to engage with others, or a lack of social or emotional reciprocity ~ Restricted, repetitive, or stereotyped behavior, manifested through a ti with ith an interest i t t that th t is i abnormal b l in i intensity i t it or focus, f preoccupation apparent inflexible adherence to specific, nonfunctional routines, stereotyped and repetitive motor mannerisms or persistent preoccupation with parts of objects ~ Clinically significant impairment in social, occupational or other important areas of functioning ~ No clinically significant delay in language prior to age 3 ~ No clinically significant delay in cognitive development or in the development of adaptive living skills (other than in social interaction)

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Pediatrics Grand Rounds 22 February 2013

University of Texas Health Science  Center at San Antonio

Autism Spectrum Disorders (ASDs)

PDD-NOS

Photo by Betty Udesen, Seattle Times

y Although Autistic Disorder and

y Characterized by:

PDD-NOS met for severe and pervasive impairment in reciprocal social interaction associated with impairment in verbal or nonverbal communication skills or with the presence of stereotyped behavior, behavior interests, and activities, but the criteria are not met for a other developmental disorders or mental health conditions. Includes atypical autism - presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these (APA, 2000)

Asperger’s Disorder contain unique diagnostic criteria, they share common similarities, including: ¾ Significant impairment in the use of

language and communication; ¾ Marked impairment in areas of social

interaction; Restricted repetitive and stereotyped ¾ Restricted, patters of behavior

‰ Autistic Disorder coexists with

language delays and, typically, Mental Retardation; Asperger’s Disorder has neither. ‰ Asperger's Disorder was not recognized as a psychological condition in the US until 1994, so it’s relatively new to many

Autism Spectrum Disorders (ASDs) Photo by Betty Udesen, Seattle Times

91998 sample study showed three groups : (1) 24% high-functioning, resembled people with Asperger syndrome but had transient language delay or mild cognitive impairment; (2) 24% resembled people with Autistic Disorder but with a late age of onset, or otherwise did not meet the full criteria for Autistic Disorder; (3) 52% described as autistic-like, but display fewer stereotyped and repetitive behaviors.

Myths Regarding ASD y Myth # 2: ASD Caused By Poor Parenting

Condition blamed on poor parenting in the 1950s and 1960s ( (Refrigerator g Mother Syndrome) y ) A neural explanation began to take form in mid-1970s

(Mahoney, W.J., Szatmari, P., MacLean, J.E., Bryson, S.E., Bartolucci, G.,  Walter, S.D., Jones, M.B., & Zwaigenbaum, L. 1998)

Parenting being blamed again as condition becomes more commonly seen, and as more highly independent folks with ASD are diagnosed

What goes around comes around y From comments in Indianapolis

Star, October 8, 2011: “To me, autistic children are simply the result of bad parenting that left ki children hild ffor misbehavior ib h i spanking and instead adopted non-phyisical punishments, such as time out and other practices that creates spoiled brats who act out because they know there is no real consequence for their actions.”

Myths Regarding ASD

y Dennis Leary, Why We

Suck (2008), asserts that autism is booming because parents “want an l i for f why h their h i explanation dumb-* kids can’t compete academically so they run to psychologists. “I don’t give a [bleep] what these crackerjack whack jobs tell you, yer kid is NOT autistic. He’s just stupid.”

y Myth # 3: People with

autism live in a world of their own

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Pediatrics Grand Rounds 22 February 2013

Myths Regarding ASD

University of Texas Health Science  Center at San Antonio

Symptoms & Characteristics Common to Autism Spectrum Disorders That Affect Social Reputation 1. Impairment with Executive Functioning skills: ¾ Inhibiting actions, self-regulation ¾ Setting goals, planning, and organizing

2. Impairments with “Theory of Mind,” or social learning: y Myth # 4: People with

ASD have no interest in personal relationships

¾

Substantial difficulty in developing an awareness of what’s in the mind of another

¾ Extreme difficulty (or even inability) in reading the body language of others ¾ Understanding subtle social rules

3. Literal language, and little understanding of pragmatics 4. Individuals with Asperger’s Disorder have a perseverative, obsessive interest in a topic (often an academic subject), and generally a normal to superior IQ.

Myths Regarding ASD y Myth # 5: People with ASD

typically have intellectual disability

y Diagnostic and Statistical Manual IV amended information

on MR as a coexisting condition with Autistic Disorder in the TR edition to “in most cases.” Previously a specific percentage (in the 70s) was stated. y Most service programs require an IQ score or an adaptive behavior or skills scale scores in the MR range in order to be eligible for services. y Most individuals with Asperger’s Disorder or highly independent folks with Autistic Disorder are ineligible for support and training services as a result

The College Program for Students with Asperger Syndrome Sponsored by the WV Autism Training Center at Marshall University

Potential Effects On Higher Education 9 A “surge” of children were diagnosed with ASD in the

1990s (VandBergeijk, Klin, & Volkmar, 2008) 9 Approximately 730,000 Americans under 21 are

affected by ASD (Center for Disease Control, 2010) 9 Between “284,000 and 486,000” are diagnosed with

milder forms of ASD, and are potentially preparing for college (VandBergeijk, Klin, & Volkmar, 2008) 9 College support programs are unprepared to meet needs of students who have normal to superior intellectual ability to enter college, but severely impaired social and cognitive skills (VandBergeijk, Klin, & Volkmar, 2008)

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Pediatrics Grand Rounds 22 February 2013

University of Texas Health Science  Center at San Antonio

Comparison To Students with  Learning Disorders O Like Learning Disorders, students with ASD struggle with typical

classroom setting where fast-paced oral instruction is provided (Hadley, 2006) O Like Learning Disorders, students with ASD generally struggle with recognizing the need for self-advocacy, and how to develop a plan for that need (Hadley, 2006) This is due primarily to impairments with executive functioning O Unlike students with LD, students with ASD typically do not recognize, understand, and practice social norms in the classroom and on campus due to impaired Theory of Mind ability (Sweeney & Sweeney, 2010). This affects relationship building with peers, relationship building with instructors, pragmatics of communication in the classroom, and the ability to understand expectations of the instructor

Transitioning to College with ASD y Enrolled 11 freshman with ASD receiving services 

through: y University of Alabama College Transition and Support 

(UA‐ACTS) (UA ACTS) y The College Program at Marshall University   

y Measuring: y Adjustment to College y Emotional Adjustment (Anxiety, Depression) y Social Adjustment (Social Stress, Friendships) y Grade Point Average

Transitioning to College with ASD (2) International Meeting for Autism Research (IMFAR) 2010 College Programs for Students with ASD: Predictors of Successful College Transition Authors: J. Emmons , Department of Psychology, Autism Spectrum Disorders Research Clinic, University l b l off Alabama, Tuscaloosa, AL S. McCurry , Department of Psychology, Autism Spectrum Disorders Research Clinic, University of Alabama, Tuscaloosa, AL M. Ellison , West Virginia Autism Training Center, Marshall University, Huntington, WV M. R. Klinger , Department of Psychology, Autism Spectrum Disorders Research Clinic, University of Alabama, Tuscaloosa, AL L. G. Klinger , Department of Psychology, Autism Spectrum Disorders Research Clinic, University of Alabama, Tuscaloosa, AL

y Conclusions: These results have significant implications for college transition programs supporting students with ASD. First, anxiety and depression were highly correlated with a number of negative outcomes such as lower grades, life satisfaction, and social adjustment. This suggests that screening for and g g symptoms y p of anxietyy and targeting depression through therapeutic interventions is a critical part of working with students with ASD. Second, results suggest that students that struggle in adjusting to college life may experience more difficulties with depression and low grades. Therefore, it is important to provide supports while beginning students are becoming oriented to being on campus and living away from home for the first time.

UNDERSTANDING THE ROLE OF CLASSROOM AND CAMPUS ACCOMODATIONS IN THE EFFECTIVE EDUCATION OF COLLEGE STUDENTS WITH ASPERGER’S DISORDER (Ellison, Clark, Cunningham, and Hansen, 2012)

Summary:

y Anxiety can negatively impact adjustment to college. y So:  Therapy and medication for anxiety should be  considered before starting college. y Social motivation is an important factor in earning 

good grades. y So:  Make sure that students learn how to talk to 

professors and peers. y College programs can reduce social stress (and 

hopefully increase life satisfaction) for students with  ASD.

UNDERSTANDING THE ROLE OF CLASSROOM AND CAMPUS ACCOMODATIONS IN THE EFFECTIVE EDUCATION OF COLLEGE STUDENTS WITH ASPERGER’S DISORDER (Ellison, Clark, Cunningham, and Hansen, 2012) Response Matrix from Round 1 of Delphi Survey

Response Matrix from Round 1 of The Delphi Survey

Barriers To Academic Success Responder

1

Knowledge of AD

X

Finances and Resources of DSS

X

4 5

Weighted Focus on Academics

Self-Advocacy and Disclosure

Responder

Academic Challenge

Social Challenge

Communication

Independent Living

Cognitive Organization

Self-Advocacy and Disclosure

X

1

X

X

X

X

X

X

4

X

X

X

X

X

X

X X

7

X X

Challenges To Campus Living

X

5

X

7

X

8

X

X

X

X

X

X

X

X

8

X

X

9

X

X

9

X

10

X

X

10

X

X X X

X

4

Pediatrics Grand Rounds 22 February 2013

University of Texas Health Science  Center at San Antonio

UNDERSTANDING THE ROLE OF CLASSROOM AND CAMPUS ACCOMODATIONS IN THE EFFECTIVE EDUCATION OF COLLEGE STUDENTS WITH ASPERGER’S DISORDER\ (Ellison, Clark, Cunningham, and Hansen, 2012)

UNDERSTANDING THE ROLE OF CLASSROOM AND CAMPUS ACCOMODATIONS IN THE EFFECTIVE EDUCATION OF COLLEGE STUDENTS WITH ASPERGER’S DISORDER (Ellison, Clark, Cunningham, and Hansen, 2012)

Response Matrix from Round 1 of The Delphi Survey

Response Matrix from Round 1 of Delphi Survey

Non-Academic Barriers To Success

Why Traditional Disability Services Are Ineffective Responder

Has a Focus on Academics

Does Not Meet Social Needs Inherent In Disorder

Lack of understanding in how to communicate information to students

1

X

X

X

4

X

5

X

9

X

10

X

Faculty/Staff Attitudes

Lack of Knowledge on AD’s

1

X

4

X

X

X

5

X

X

8

X

X

9

X

10

X

Self-Advocacy and Disclosure

X

7

X X

Finances and Resources

X

7 8

Responder

X

X X

X

UNDERSTANDING THE ROLE OF CLASSROOM AND CAMPUS ACCOMODATIONS IN THE EFFECTIVE EDUCATION OF COLLEGE STUDENTS WITH ASPERGER’S DISORDER (Ellison, Clark, Cunningham, and Hansen, 2012)

X

X X

X

X

Effective College Supports Dillon (2007)

Response Matrix from Round 1 of Delphi Survey

9 A collaborative relationship between the college, the students, and

Areas Of Most Effective Supports Responder

Access to basic accommodations and modifications

Staff to Provide Academic Assistance

Staff to Provide Social Assistance

Assistance in Identifying Campus Resources

Mental Health Services

X

1

X

X

X

4

X

X

X

X

X

5 7

X

8 9 10

X

X

X

X

X

9 9 9

X

9 X

X

9

a service provider with expertise in ASD from which supports are designed that incorporate goals of self-advocacy and empowerment The development of a mentoring support program that meets the individualized academic and social needs of the student with ASD,, and provide an opportunity for role modeling Weekly support and skill building groups Periodic contact with faculty to establish relationship and provide opportunity for addressing concerns and giving suggestions for effective instruction The use of technology to overcome social and organizational barriers Professors take the lead in developing students/professor relationship (Schray, 2009)

Questions ?

5