Autism Spectrum Disorders: Foundations for Understanding and Service Provision in PostSecondary Education Lisa King, M.Ed. Jane Thierfeld Brown Ed.D. (in absentia) Lorraine Wolf Ph.D. (in absentia) Lisa@collegeautismspectrum.com 612-730-1806 March 25, 2010 Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Is this your student?………. They: • can’t read the entire chapter because it’s “irrelevant” • score 35 on the ACT’s • make poor choices: can’t get off the internet long enough to study • are fluent in four languages (self-taught) • can’t turn in the paper because it’s not perfect • could have written the textbook • don’t learn from mistakes: take 20 credits each semester then crash • find the cure for the common cold • can’t “repair” or change course after acquiring new info • can’t remember to refill or take their meds • have 150 IQ’s • get lost on campus on daily basis Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce The Modal AS Student Male Logical Spatially aware Honest Detail Oriented Eye contact issues Thorough Independent Thinker Clumsy Efficient Wolf, Thierfeld Brown, King, Bork, 2008 Focused Lonely or sad Appears rigid Disorganized Sensory aversive Bright, especially in areas of interest Doesn’t see others point of view Uses odd phrases or gestures CollegeAutismSpectrum.com Do Not Reproduce Autism Spectrum Disorders Umbrella of Autism Spectrum Disorders is a disability category of neurological disorders characterized by “severe and pervasive” impairment in several areas of development. Significant Impairments in 3 core behavioral features or indicators… 1.Social interaction 2.Communication 3.Restricted repetitive and stereotyped patterns of behavior Wide range of severity in behavioral and learning profiles The borders: Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder (CDD), Rett's Disorder, PDD-Not Otherwise Specified (PDD-NOS), others… Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Aspergers Syndrome Normal to (way) above average IQ Mildest end of spectrum Best prognosis No language delay (clinical criteria) Shadow syndromes range into normal Einstein, Mozart, Gates? Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Autism Goes to College Increasing numbers on campus Not like other college students with disabilities Accommodations typically needed in social and executive areas vs academic Support needed in the extra-academic campus experience Environment presents barriers Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Statistics Incidence: The number of children in Minnesota diagnosed with Autism Spectrum Disorders increased 1,291% from 1993 to 2003- Department of Education, 2003 One in 100 is diagnosed with an Autism spectrum or related disorder-Center for Disease Control, July 2009 Popular press (Wired, Time magazines, Amazing Race, etc.) DSM IV - Asperger’s Syndrome added as new diagnosis in 1994. Programs/Services: Gersch Academy, College Living Experience, MN Life College, Marshall University, etc. Strategic Education for Asperger’s Students -Thierfeld Brown and Wolf, 2005 University of Minnesota, UCONN, Storres Campus Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Incidence or Prevalence? Why should we pay attention? Unique gifts and potential for societal impact Potential to drain time, energy, resources of institution Low incidence high maintenance Paradigm shift: environment is the barrier Ready or not, here they come! Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Why Can’t He Get it Together? Imagine if you processed pieces of the environment in the order they came in and could not organize these bits? Imagine if you screened out many of the bits because they confused or overwhelmed you? What if you could not rely on consistency in your sensory environment? Imagine if you could not fathom how other people do it any differently? What if everyone is expecting or demanding that you comply with things you don’t understand? Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce What’s it like to think like AS? Distractible Unable to “know” what other’s want from me Concrete – black and white Highly knowledgeable about certain topics Excellent memory for things that were said, seen, heard, from a long time ago – many of wouldn’t Remember (pros and cons) I show little to no care or interest in interest areas of my friends and family Problems generalizing across settings Rule-bound From Leppicello, Mitch. LICSW 2006 Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Growing up with AS Many negative experiences: trauma - big “T” and little “t” Bullied, teased, ridiculed by peers, siblings, by adults: often coaches and teachers General sense and feeling of being lost and confused for sometimes decades of their life. Misdiagnosed and mistreated from mental health to education; many professionals For most young adults on the autism spectrum, depression and anxiety are daily facts of life. Robin McLeod and Mitch Leppicello for U of M, 2005 Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Co-Morbid Conditions Remember, depression and anxiety are daily facts of life. There are no meds for AS,only help to manage other symptoms Behaviors that resemble symptoms of depression and anxiety may be functioning as sensory regulation strategies McLeod, Robin for U of M 2005 Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Oops, Wrong Planet Syndrome Being autistic means that when the person entered this world, no one gave him (or her) “the orientation manual for extraterrestrials!” Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Neurotypical Disorder (NTD) Is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. Impairment in independent social interaction delusional “awareness” of others’ feelings abnormally seeks comfort from others when distressed imitates others mindlessly (waves bye-bye) obsessive rigidity regarding social conformity phobic avoidance of being different From: http://isnt.autistics.org/ Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Major Skills Expected from ALL Beginning College Students Classroom Preparation: Study habits/ test taking skills Self advocate Organized Social Skills: Interact according to social norms Deal with criticism, peer pressure Use telephone and email effectively Independent Living Skills: Locate help when needed Use leisure time effective Carry out basic tasks: laundry Budgeting, managing money Adapted from Technology for Transition: College Planning State Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Theories of cognitive challenge for AS Executive functioning (The Conductor in the orchestra) Frontal lobe functions: – – – – – – – – Emotional-Regulation Inhibition of Impulsive Responding Planning & Organization Goal Directed Behavior Attention Problem Solving Working Memory Shifting Set Theory of Mind Central Coherence “Can he PASS the course? He could have written the textbook! But…it doesn’t matter if he can’t get to class!” Quote from physics professor, U of M Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Gaining Admission is NOT the issue…………… It’s completing a degree ! Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Typical path of new students with AS: Special Ed is all done No more disability I want to be like everyone else STRESS I am overwhelmed What’s wrong with me Depression, isolation CRASH Cleaning up “the mess” Lost time, money, resources maybe irreparable damage… Then hopefully……. Maybe I do need support Wolf, Thierfeld Brown, King Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Domains affected: Social Communication (Language) Behavior Other Associated Features: Motor clumsiness Perceptual difficulties (visual) Sensory sensitivities Organizational and planning deficits Depression/anxiety Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Areas of Impact Overlap Cognitive/Language Social Behavioral Adapted from Bishop, 2001 When you have met one person with Aspergers…… You have met one person with AS. Stephen Shore Assume that you know very little about the person’s experience. You cannot guess what their experience is based on your experiences of similar situations. OCALI Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Where we see the impact: Academic Matters Being overwhelmed Use of the syllabus Time management issues Multi-tasking issues Group work Initiation issues The paradox of deadlines Homework Taking notes Perspective taking Tutoring and issues associated with it Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Writing Specific Issues Essay questions English courses and courses requiring papers Writing papers vs. writing “the obvious” Peer editing Writing per assignment vs. a novel Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Where we see the impact: Behaviors Interruptions or calling out Correcting instructor Out of seat Sensory integration Mannerisms or noises Classmate attitudes or reactions Meltdowns or outbursts Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce College personnel will likely face: Behavior issues: odd, offensive, awkward Social issues: complaints related to interacting with others Emotional issues: anger outbursts, meltdowns Learning issues: not wanting to do homework, misunderstood assignments DS and staffs role: reassure faculty Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce An Intellectual Map Most Behaviors serve a purpose Find the commonalities in the triggers Target the behavior Develop: accommodation plan scripts to cope rules to manage behavior Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Where we see the impact: Extra Curricular Housing and residential life Social and interpersonal Navigating the environment Clubs, joining and involvement Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Navigating social interactions Reading facial expressions Understanding tone of voice Teasing versus sarcasm Understanding casual chit-chat Ending conversations Round peg in a square hole Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Research Findings Social competence is associated with acceptance by peers, positive self concept and successful employment Social skill impairments are most critical for high functioning students Once students leave school “situations requiring social competence tend to far outnumber those requiring academic skill” (Canney & Byrne, 2006) Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce ASD and Second Life Texas researchers believe that people who have Asperger's Syndrome may have found a new therapy in an unlikely place: the online virtual world Second Life. As a treatment, professionals take patients through a series of exercises, in groups and individually, designed to help them learn social skills. In the center's new therapy, patients may have a job interview with a "boss" character or learn to ask another avatar out on a date. http://abcnews.go.com/Technology/OnCall/Story?id=4133184&page=1 STRESS Typical Stressors at College • The seat you usually sit in is taken when you get to class. • You have to look for a different parking spot every day. • They are out of the foods you eat when you get to the dining hall. • The professor has left a note on the classroom door explaining that class will be held in an alternative building today. • You are called upon in class to discuss a reading with a student next to you. • The class you are taking is a summer school class but your college calendar only shows the dates for fall and spring semester. • The bookstore does not have the book you need when you arrive to purchase it. • Your C.A. tells you there have been complaints about your hygiene. Stress & Higher Education Increase academic demand Away from home in new environment Sleep & eating changes Identity crises Changed family dynamic Financial burdens Social changes New people, ideas, expectations Alcohol & drugs Sexual identity Prepare for postgraduate life, career uncertain copyright Wolf, Thierfeld Brown, 2009 Wolf, Thierfeld Brown, King, Bork, 2008 Bork CollegeAutismSpectrum.com Adapted from NIMH 1997 Do Not Reproduce NEW + Change = STRESS!!! Lack of clarity Being misunderstood Social situations Confusion/chaos Unstructured Having time to rush Change/novelty Having things not go the way you wanted Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce The Incredible 5 Point Scale Social narrative that teaches a student about : • How to manage Stress • Determine appropriate social Behaviors ** See A 5 is Against the Law Author: Kari Dunn Buron Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Kari Dunn Buron’s books Sensory Integration Dysfunction Lights Music General dorm or noise Fire alarms Touch Behaviors/causes/misinterpretation Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Sensory Area Calming Activities Alerting Activities Tactile Wear soft clothing like sweat pants. Squeeze resistive putty Wear ankle weights or weighted vest Handle fidget items Hold something cold Wash face with cool cloth Light touch to the palm of the hand Proprioceptive Push heavy object Push a heavy cart Carry boxes Vacuum the floor Deliver office mail, papers. Exercise Pick up trash in hall ways Vestibular Rock in a rocking chair Gustatory Chew, suck on a pen top, necklace, hard candy. Suck liquids through a straw. Drink warm liquids Eat crunchy foods-pretzels, ice, carrots, celery, apple. Eat chewy food-licorice, taffy, gum. Keep water bottle with cold water on desk Olfactory Write with a scented pen or marker. Smell potpourri, scented candle. Use scented lotion or soap Spray a citrus room deodorizer Auditory Listen to quiet music with slow, even beat. Listen to soft singing or humming. Work in a quiet environment Use headphones to block noise. Prepare in advance for loud, strange noises (startle). Listen to music with varied pitch, loudness or uneven beat. Speak in animated high and low voice. Visual Work in dim light or with no lights. Work at distraction free desk. Work in natural light. Work in bright light. Use colored paper. Use highlighter. Adapted from Simple Strategies That Work! p. 18-19. www.asperger.net Behavior Cause Head on desk (mis)Interpretation Sensory overload Rude, sleeping Mimics or recites back Time to process Not taking speaker seriously Great expressive skills Compensates for receptive skills Overestimation of functioning Odd speaking habits Pragmatic Language deficits Inappropriate May not respond to facial expressions, tone Difficulty with non-verbals Leads to miscues in assignments Does not recognize you Limited facial recognition Aloof, rude May not shift topic on cue Does not Self-absorbed, automatically catch on uninterested HYPER or HYPO Too Much or too Little? Sensory issue/ possible strategies Think in terms of “replacing” rather than “extinguishing”for inappropriate behaviors Examples: Chewing gum vs. constant nose-blowing Carpet swatch under desk vs. picking at skin Doodling on paper vs. head down during lecture Sprig of rosemary vs. smelling armpit Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Advice for Support Staff: Lose the counselor hat “how do you feel?” Develop rapport first: find the “hook” Use visuals: maps, write things down Use formulas: “if….then…..” Dry humor, wit Remember: PTSD ( hx of little “t’s” through life) Consider mentors Use “rules” Wolf, Thierfeld Brown, King Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Working with the family Like father, like son Great memory for all that’s gone wrong (hx of little “t’s”) Unreasonable requests To parents, “services” = “program” Helicopter…? Time on front end = insurance Write things down Clarify roles Have agendas for meetings Use same strategies you use for student Wolf, Thierfeld Brown, King Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Transition issues: The newness of your campus Size and Culture Navigating campus Unfamiliar terms: “Registrar’s Office and Bursar’s Office Campus expectations: students managing their own business as adults Schedules different from what the students are accustomed to having Syllabus: importance and use of to manage one’s time Wolf, Thierfeld Brown, King Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce The importance of building Trust Get into the world of student : Find the hook! Increase awareness of strengths before addressing deficits Link skills to the students goals Use of assigned readings: AquaMarine Blue #5 Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Generate options for dealing with stressful situations (emphasize options and effective) Encourage a willingness to ask for help (“The smartest people ask for help”) Increase the skill of identifying who can be helpful in different situations Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Tools for the student Provide student with DS “handbook” Maps Contact info: profs, T.A.s, DS, health center, writing center, etc. Campus spending account Grade tracking forms Calendar (time management) Organization training Ann Palmer, parent of AS, TEAACH Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Advice for Support Staff: Lose the counselor hat “how do you feel?” Develop rapport first: find the “hook” Use visuals: maps, write things down Use formulas: “if….then…..” Dry humor, wit Remember: PTSD ( hx of little “t’s” through life) Wolf, Thierfeld Brown, King Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce An Intellectual Map Most Behaviors serve a purpose Find the commonalities in the triggers Target the behavior Develop: accommodation plan scripts to cope Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Developing Scripts Learning to be a good advocate Teaching negotiating strategies Working with others for problem solving Employment on campus? Working with peers Members of the opposite sex Getting started in organizations Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce SCRIPTS for solving problems Classroom Problems THE SITUATION OR ISSUE: My lab partner does not show up and I have to do the lab alone. STEP ONE: Identify problem Anxiety and distraction due to unexpected change in routine. STEP TWO: Dete rmine Solutions 1. Ask to leave class for a few minutes to calm down 2. Use relaxation techniques 3. Talk to TA or professor to determine options 4. Join another group STEP THREE: Who can help 1. Myself / Self-help 2. Professor or TA College Autism Spectrum 3/09 Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce In theory… • Academic difficulties in AS directly related to deficits in integration, executive dysfunction, and selfregulation • If we understand why, we can figure out when and how to best accommodate Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Support for Student Help make the unfamiliar more familiar Pictures Maps Repeated visits Familiar routines in new places Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Clear Behavioral Requirements Behavioral standards & expectations must be explicit Student & family need to understand because this is different from high school Standards are not subject to accommodation Make sure student understands the rules and the consequences for breaking them Written communication! Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Good Night! Do 5-10 minutes of cleaning (start in bathroom) Lock doors Take medication Fill pill case. If you need refill, put in palm pilot Put socks in washer Hang clothes if dryer is full Check Palm for tomorrow's schedule Brush teeth Do you need to use the bathroom? Put glasses on the bathroom counter Go to bed! Zzzzz.... Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Importance of Structure Organization: have a clear beginning and end Predictability, Structure, and Routine can never be under-estimated Visual Supports are helpful, regardless of how many times one is verbally given the message or asked a question Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Learning to use a Schedule Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Clocks or Timers can help with waiting ….if events occur at a predictable time Resource Notebook Financial information: spending account, bank account numbers, bank location and phone number, etc. Employer information: rules, breaks information Important contacts: job coach, instructors, mentor, etc. Social options- list of free time activities, club and organization information, info on upcoming social events Medical info: doctor’s contacts, meds, dosage Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Developing Scripts Learning to be a good advocate Teaching negotiating strategies Working with faculty for problem solving Employment on campus? Working with peers Members of the opposite sex Getting started in organizations Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Policies and Procedures Know and use the student conduct code Create rules sheet Create social/ res life reminders BE SPECIFIC and concrete Scripts: Fire Drills, lock downs Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce When working with students with AS, remember: Consistency, Structure and Predictability Honor who they are; prioritize challenges based on impact on life/job or course Use special interests or fascinations whenever possible; find their “hook” Visuals remain constant, words do not What’s obvious to you is not to AS, explain Adapted from Dorothy Lucci, MGH/YouthCare, 05. Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce When working with students with AS, remember: If you have met one person with AS, you have met one person with AS Be clear and direct in communication: say what you mean; mean what you say Provide big picture and details: why are we doing what we are doing Don’t assume what’s in your head is in theirs: check it out Adapted from Dorothy Lucci, MGH/YouthCare, 05. Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce Questions and Comments Thank you for coming. Lisa King, M.Ed. Higher Education and Autism Spectrum Disorders, Inc. 612-730-1806 Lisaking.ASHE@comcast.net www.CollegewAutismSpectrum.com Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce