Friday, November 19, 2010

Project Access Presentation on IDEAS/Asperger Syndrome (Autism)

Lisa Crabtree,  Mathew Eberly & Janet DeLany

Asperger Syndrome in College: Life After Individuals with Disabilities Education Improvement Act (IDEA)


Project Access Presentation November 19, 2010

Overview of Autism Spectrum Disorder

Strengths & challenges of high school students with ASD in college

Models of successful people with ASD
Assessment and intervention frameworks
Strategies to support high school students
Strategies to support college student
Panel discussion of college students with ASD
Small group work
Large group discussion

Historical Background
1943 Leo Kanner manuscript in USA-  “autistic disturbances of affective contact”
1944 Hans Asperger manuscript in Europe “autistic psychopathy”
1981 Lorna Wing describes “autistic triad” Deficits in social, behavioral, and language domains
1991 Uta Frith translation of Asperger monograph
1994 Asperger Syndrome coded into the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)
(DSM V is a diagnostic criteria and statistical manual used to diagnose psychiatric disorders including autism. We’re currently IV, which is being revised for the V version which will come out in 2012.)
(Wolf et al., 2009, p. 11)

Definition - Pervasive Developmental Disorder
According to DSM IV - a cluster of symptoms that ranges in type and severity that include:

Qualitative impairment in social interaction1.Qualitative impairment in social interaction in 2 of the areas: Nonverbal behaviors, peer relationships, spontaneous sharing interest with others, social or emotional reciprocity
Communication disorders
Stereotyped, repetitive patterns of behaviors or a restricted range of interest
Includes Autistic Disorder, Asperger Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Rett Syndrome, Childhood Disintegrative Disorder
Three diagnoses are often referred to as autism spectrum disorder (ASD) rather than PDD
(APA, 2000)


According to proposed DSM V - Must meet criteria 1, 2, and 3:

1.  Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following: (a)  Marked deficits in nonverbal and verbal communication used for social interaction; (b) Lack of social reciprocity; (c) Failure to develop and maintain peer relationships appropriate to developmental level
2.  Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following: (a) Stereotyped motor or verbal behaviors, or unusual sensory behaviors; (b) Excessive adherence to routines and ritualized patterns of behavior; (c) Restricted, fixated interests
3.  Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
(APA, 2010)

According to The Individuals with Disabilities Education Improvement Act of 2004, autism is a developmental disability significantly affecting verbal and non-verbal communication and social interaction generally evident before age 3 that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences
(IDEA, 2004, §300. 8[c][1][i])

Prevalence
2009 CDC prevalence for ASD - 1:110 Theories
Lowest prevalence: WV
Highest prevalence: NJ
210% increase in autism referrals in California 1999-2009
2009 prevalence of ASD based on parental report – 1 :91
2006 Survey of 42 colleges with Asperger syndrome
4.28 students with AS at four-year institutions
8.9 students with AS at community and technical colleges
(CDC, 2006; ; Kogan et al., 2009; Wolfe et al., 2009)

Increased Prevalence
Increased awareness of parents, medical professionals, educational system
Increased number of referrals
Increased public awareness/recognition
Formal codification of diagnostic criteria
Inclusion in DSM-IV
Broadening of diagnostic categories
Variance in study methodologies
(Wolf et al., 2009)

Increased Prevalence

Rutter’s (2005) epidemiological studies
¼ have classic autism; ¾ had another ASD
½ had mild to severe intellectual disabilities
Increase in prevalence is directly related to broadening of autism spectrum to include individuals who are not diagnosed with intellectual disabilities

CDC sample
ASD is three to 7xs more prevalent in males than females
Gender distribution is common in neurodevelopmental disorders
Male prevalence increases with intelligence
(CDC, 2009; Rutter, 2005; Wolf et al., 2009)

No single factor seems to account for the rise [in the diagnoses of autism]. Nor should any single factor be accepted at face value. For example, if we accept that scientists are counting cases more accurately than before, we should look into how and why they started counting them better. If we accept that new diagnostic criteria are responsible for the increase in prevalence rates, how and why did the new diagnostic criteria emerge at this time in our history? And if we believe that autism awareness is at an all-time high, how did this happen? Richard Roy Grinker (2006, p. 10) as cited in Paradiz (2009, p. 25)

DSM - IV Diagnostic Characteristics for Asperger Syndrome

2. Restricted, repetitive patterns of behavior in one area: restricted interests that are abnormal in focus or intensity; inflexible routines; stereotypical or repetitive motor movements; persistent occupation with parts of an object.
3. Clinically significant impairment in social, occupational, or other areas of function
4. No clinically significant delay in language, cognition, self- help, adaptive behaviors
(APA, 2000)

Value of Terminology: Medical Model vs. Advocacy Model

Cognitive Characteristics Associated with Asperger Syndrome
Strengths
Average to above average intelligence
Strong rote memory
Sustained interest on specific topic
Sustained attention to detail on specific topics

Skilled problem solving in area of

Challenges Theory of mind challenges
Executive functioning challenges (planning, organizing, shifting focus, multitasking, generalization)
Integrative processing challenges
Abstract problem solving challenges
(ASA, 2010; Myles, 2001)

Communication Characteristics Associated with Asperger Syndrome
 

Strengths
Well developed vocabulary
Well developed structural language skills (correct syntax and pronunciation)
Visual patterns among concepts and data


Challenges
Pragmatic language challenges

Sensory & Motor Characteristics Associated with Asperger Syndrome
Difficulty understanding nonverbal cues, using gestures, sustaining eye contact
Difficulty using language to initiate and sustain conversation
Interpreting language only literally
Difficulty with perspective taking
Difficulty understanding hidden curriculum and implicit rules
Unusual speech patterns

Strengths
Heightened attention to subtle variations and differences
Heightened awareness of patterns among apparent disparate details
Sustained focus to precision of movement patterns for a particular task

Challenges
Over or under responsivity to tactile, visual, auditory, gustatory, olfactory, vestibular, or proprioceptive input
Flight or fight responses to sensory overload
Clumsy or awkward movements
(Myles, 2001)

Social Characteristics Associated with Asperger Syndrome

Strengths
Loyal friend
Desire for friendships
Capacity for empathy
Forthrightness in communication
Alternative perspectives for seeing behaviors of others

Challenges
Difficulty knowing how to initiate and sustain friendships
Limited opportunities to form friendships
Difficulty understanding social nuances
Difficulty coping with large groups of people
 
Behavioral Characteristics Associated with Asperger Syndrome
Strengths
Adherence to rules and routines
Attention to details
Sustained commitment to a task of interest

Challenges
Difficulty accommodating to changes

Social Challenges that Continue into College
Difficulty adjusting behaviors to various contexts
Difficulty with developing multiple strategies to manage stress
Difficulty accommodating to changes
Difficulty adjusting behaviors to various contexts
Difficulty with developing multiple strategies to manage stress
(Myles, 2001)

Task Challenges that Continue into College
Organizing time effectively
Balancing tangential or deep interests with other tasks that need to be completed
Knowing how to subdivide tasks into manageable chunks and to allocate sufficient time for task completions
Balancing sustained attention to one task with simultaneous attention to several tasks
Knowing where to find and how to use resources
Viewing issues from multiple perspectives and understanding the nuances of those perspectives. (Harpur et al., 2005)

Environmental Challenges that Continue into College
Coping with the following:
crowded classroom and hallways
too bright lighting
noisy venues, study and living spaces
multiple smells- perfumes, food, classroom supplies, cleaning supplies
shared educational, work, and living spaces
fast paced and shifting focus of conversations and discussions
(Wolf et al., 2009)

Distinguishing between appropriate / inappropriate attitudes and behaviors
Managing social aspects of group projects
Anxiety with meeting new people, making friends, and fitting in
Recognizing false friends who exploit trust and social naiveté
Interpreting social cues
Distinguishing between safe and risky environments and situations
Negotiating physical, personal, and emotional space
Coping with loneliness and social isolation
(Harpur et al., 2005)


Health & Behavioral Challenges that Continue into College
Sleep patterns: 43%- 83% have Sleep apnea and fragmented sleep patterns
Gastrointestinal difficulties: 45% have Abdominal pain (59%), constipation, diarrhea, nausea
Behavioral: 24%-57% are on psychotropic medications
Attentions span issues include: Hyperactivity, anxiety, repetitive behaviors
(Autism Treatment Network, 2010)
Co–occurring Mental Health Challenges
Social anxiety disorder
Often begins in adolescence
May involve amygdala

Panic attacks
Triggered by stressful events
May be genetic

Generalized anxiety disorder
Nervousness, restlessness
Poor concentration
Irritable or depressed mood
Muscle tension, disturbed sleep

ADHD
Difficulty shifting focus whole
Difficulty modulating sensory intensity


Obsessive compulsive disorder
Obsessions: unwanted, repetitive, intrusive thoughts
Compulsions: carry out rituals

Depression
40 to 80% higher than general population)
Coexists with anxiety problems

Alcohol and drug abuse
Use as self-medication
May result from being misguided by others or trying to fit in socially

Why Everyone Should Care: Intellectually ability + area of passionate interest = Academic success. 

"People on the autism spectrum are integral members of their families and communities, and have the right to fully participate in the educational, social, cultural, political, and economic life of society" (Towson University, 2010)  (Harpur et al., 2005)

University education is necessary for students with HFA and AS to succeed in the work world, achieve their potential, and become active participants in their communities.
Currently, many students with HFA and AS who have the capacity to work do not because of difficulties with social demands.
Current employment options may not fit students’ talents.
2004 US Bureau of Labor Statistics: service sectors have the largest anticipated job growth over the next decade.
As many people with ASD have difficulty with social skills this may not be the best area for them.
Detail oriented jobs may be a better fit
(Wolf et al, 2009)
Transition

Avoid Tunnels and Cliffs

Strategies to Support Transition
Personal growth, Social skills coaching, Generalized practice, Environmental modifications,
Safe, welcoming environments, Peers, job coaches, social coaches, peer navigators, ambassadors to ‘neurotypical culture’, Opportunities for participation, Address isolation and Exposure to new experiences

High School Students Strategies

Academic: College preparation & organizational strategies and Investigation of accommodation options

Life Skills: Self-monitoring, Self-programming and Self-correcting
Social: Acquaintances & Friends, Communication strategies and Alcohol & drugs

Academic Strategies: Organizational strategies and visual supports, Academic support services identification, Intrinsic reward systems, College student & graduate speakers and Campus visits, formal communication strategies, Predictability and preparation for change.
(Harpur et al., 2005; Wolf, et al., 2009)

Life Skills Strategies: Self-advocacy, Resource Identification, Time management, Stress management, Anger management and Creation of explicit sets of routines, rules, scripts, expectations.
Social Strategies: Learning social interactions can be like learning a second language, College activities, Sex and sexuality, Extracurricular activities, Social communication: Hidden Curriculum and Parent relationships.

College Students: Legal Issues
Section 504 of the Rehabilitation Act of 1973 http://www.hhs.gov/ocr/504.pdfCollege Students: Strategies: Academic, Interactions with advisors and faculty, Pace of assignments, Goal is transition to work, Life Skills, Housing (on-campus or off), Campus resources, Social, Campus activities & peer navigators, Roommates, clubs, study groups and Intimate relationships
 

Academic Strategies: Academic advisors provide support & resources, Students learn to structure education without IEP, Attendance, Lectures, Group work, Lab classes or tutorials and Relationships with faculty & staff.

The Americans with Disabilities Act www.ada.gov
Federal Education Rights and Privacy Act www.ferpa.gov

Disclosure and confidentiality
University rights and responsibilities
Student rights and responsibilities

Planning For Emergencies: Sensory emergency kits, Advanced planning & preparation, Simple explanations (Social Scripts), Escape routes (the socially acceptable way out and the physical way out) Zaks

Towson University Center for Adults with Autism provides:
 
Peer support model for high school and college students, Co-engagement to support participation, Reciprocal teaching and learning, Educational models for changing attitudes and knowledge, Student volunteers, Service learning, Course assignments, Internships and a Post-Baccalaureate Certificate in Autism Studies

Pictures of past students


Life Skills Strategies: Schedules, Time management, Exam preparation, Residence life, Domestic responsibilities/hygiene, Money management, Stress and anxiety management.

Social Strategies: Family support, Self-assertion, Difference between acquaintances and friends, Drinking, Drug use, Communication with roommates, classmates, and the opposite sex.

Longitudinal process that includes a vision for the future inclusive experiences, a “blueprint for navigating the waters of the community, workplace, finances, personal life, and home” (Wehman, 2006, p. 10)

Attend to the person’s strengths and challenges supports and barriers of the social, physical, political, and cultural environment's tasks to be accomplished and potential modifications.

Transition Frameworks
Transition to Independence Process (TIP) (Clark, Koroloff, Geller, & Sondheimer, 2008)

Mental health recovery model
Online training modules
PATH Process (Bunch, Finnegan, & Pearpoint, 2009)
Begin with a dream for the future
Plan possible and positive actions
DO-IT (Disabilities, Opportunities, Internetworking and Technology) (Burgstahler, Lopez, & Jirikowic, 2007)
Create optimum learning environment
E-mentoring
Self-determination
Person-centered planning
Tailored services
Enhancement of competencies
Social responsibility
Focus on the outcome
Networks of support
Assessment: Ziggurat Model

Individual Strengths and Skills Inventory
Underlying Characteristics of Autism: Classic or High Functioning (Aspy & Grossman, 2008)

Assessment: Integrated Self-Advocacy
The Sensory Scan
The Social Scan
Self-Advocacy Portfolio

Goals of Transitioning Youth:
Increase personal independence and social responsibility (Kavale & Forness, 1999)
Become productive and welcome members of their community (Erdman, 2008)
Live lives of competency, quality, and dignity (Gerhardt, 2008)

Outcomes:
Increase in services for children has not resulted in significant improvement in adult outcomes
The majority of adults on the autism spectrum:
Live at home (85%)
Have few friendships
Are unemployed (75%-95%)
People, rather than particular methods, made a difference
Billstedt, Gillberg,& Gillberg, 2005; Eaves, & Ho, 2008; Howlin, Goode, Hutton, & Rutter, 2004; Muller, Schuler, & Yates, 2008
Contextual Barriers

“What disables people with autism… is the contextual barriers built around them” (p. 53) David, 2010
Help Each Other Up!
 
“I think the mentors learned as much from me about autism as I learned from them about improving my own skills.”
“It is important to have group and work experiences to prepare individuals for life after graduation”
.

Participant Feedback
 “I enjoyed teaching the mentors about autism from an inside perspective.”
“Some of us communicate our thoughts with greater struggle than others, but we all have something to say. The true test of any program or organization aiming to support autistic people is the approval of the autistic people being served.”

Invitation: In spite of our good training or highly developed insight of our students, clients, and loved ones with autism, we cannot assume we know what it is like to be in their shoes, to live their sensory lives, or to feel social experiences the way they do. We cannot assume that we always know what might constitute an improvement in quality of life for an individual. We must learn to trust that they themselves, if given the training, opportunity, and permission to do so, will open doors of understanding to us that we never imagined. (Paradiz, 2009, p. 8)

Contact Information: Lisa Crabtree & Janet Delany 


Department of Occupational Therapy & Occupational Science

College of Health Professions

Towson University

8000 York Rd

Towson, MD 21252

References:
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (Fourth Edition—Text Revision). Washington, DC: Author.

American Psychiatric Association, (2010). DSM V development: 299.0 autistic disorder. Retrieved October 31, 2010 from http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94.

Aspy, R., & Grossman, B. (2008) Designing comprehensive interventions for individuals with high-functioning autism and Asperger syndrome: The Ziggurat Model. Shawnee Mission, KS: Autism Asperger Publishing Company.

Billstedt, E., Gillberg, C., & Gillberg, C. (2005). Autism after adolescence: Population-based 13-22 year follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders, 15(3), 351-360.

Bunch, G., Finnegan, K., & Pearpoint, J. (2009). Planning for real life after school: Ways for teachers and families to plan for students experiencing significant challenge. Toronto: Inclusion Press.


Centers for Disease Control and Prevention (2009). Prevalence of Autism Spectrum Disorders-Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report (December 18), 58, SS-10.

David, A. (2010). Mission possible: Preparing youth with special needs for life. Autism Advocate, 57 (4), 51-54.

Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 739-747.

Harpur, J. Lawlor, M., & Fitzgerald, M. (2005). Succeeding in college with Asperger syndrome. A student guide. Philadelphia, PA: Jessica Kingsley.

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212-219.

Individuals with Disabilities Education Improvement Act (IDEA) of 2004. Public Law 108–446, 20 U.S.C.

Kogan, M.D., Perrin, M., Ghandour, R.M., Singh, G.K., Strickland, B.B., Trevathan, E., Van Dyck, P.C. et al., (2009). Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007. Pediatrics, 124, 1-9.
Burgstahler, S., Lopez, S., & Jirikowic, T. (2007). Creating a transition program for teens: How DO–IT does it, and how you can do it, too. Seattle: University of Washington.

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