How do Students with autism and Asperger Syndrome adapt to academic settings? Some considerations for an adequate support Presented by: Dr Renata Stefańska-Klar.

How doHow do Students with Students with autism andautism and Asperger Asperger SyndromeSyndrome adapt to adapt to academic settings?academic settings?

Some considerations for an adequate Some considerations for an adequate supportsupport

Presented by:Presented by:Dr Renata Stefańska-KlarDr Renata Stefańska-Klar

Silesian University, KatowiceSilesian University, KatowiceFaculty of Ethnology and Sciences of Faculty of Ethnology and Sciences of

Education,CieszynEducation,[email protected]@gmail.com

DefinitionDefinitionAutism as well as Autism as well as Asperger’s Syndrome Asperger’s Syndrome

aarere the pervasive the pervasive developmental disabilitdevelopmental disabilities ies

(PDD) (PDD)

thatthat are are defined by defined by

• impairments in social relationshipsimpairments in social relationships

• verbal and nonverbal communicationverbal and nonverbal communication

• restrictive, repetitive patterns of restrictive, repetitive patterns of

behaviors, interests, and activities.behaviors, interests, and activities.

Some history…Some history…

• Autism was iAutism was identified dentified the first time w the first time w 1943 by Leo Kanner (USA)1943 by Leo Kanner (USA)

• AS was described AS was described in 194in 19444 by Hans by Hans AspergerAsperger (Austria)(Austria) in similar manner in similar manner

• and band brought to the attention of the rought to the attention of the English-speaking world in 1980 by Dr. English-speaking world in 1980 by Dr. Lorna Wing.Lorna Wing.

• WHO aWHO added dded AS AS to the to the ICD-10 in 1992 ICD-10 in 1992 (DSM -(DSM - until 1994 until 1994))

Both autism and Asperger Both autism and Asperger syndrome are:syndrome are:

• llinked to biological or neurological differences inked to biological or neurological differences in the brain in the brain

• NOT mental illnessNOT mental illnesseses; NOT caused by bad ; NOT caused by bad parentingparenting

• oftenoften comorbid with ADHD, Speech-Language comorbid with ADHD, Speech-Language disorder, or Tourette’s disorder.disorder, or Tourette’s disorder.

• Asperger syndrome (AS) is milder form of Asperger syndrome (AS) is milder form of autism, without language development autism, without language development problemsproblems

• Young people with high functioning autism Young people with high functioning autism (HFA) are very similar to those with Asperger (HFA) are very similar to those with Asperger syndromesyndrome

High Functioning Autism as High Functioning Autism as well as Asperger Syndromewell as Asperger Syndrome

do not affect do not affect intellectual intellectual abilityability

oftenoften

on the contraryon the contrary

Cognitive Cognitive ProfileProfile•Encyclopedic memory•Computer-like mind •Concentration on selected topic or area•Often visual learning style •Preference for routines•Limited flexibility in thinking, instead•Strong need of systemizing•Highly independent•IQ range from norm to genius

Affected are interpersonal Affected are interpersonal relations and social relations and social

understandingunderstanding Student whoStudent who has Asperger's syndrome or is has Asperger's syndrome or is

Autistic, Autistic, surely usually surely usually hahaveve difficult difficultiesies with with normal group normal group contacts contacts or social discourse. or social discourse. She or he may to show a mShe or he may to show a marked delay in arked delay in non-verbal behaviorsnon-verbal behaviors and some kind and some kind ppeculiarities in eculiarities in her or his her or his speechspeech. . Sometimes person with AS/HFA may look Sometimes person with AS/HFA may look and behave somewhat eccentric and even and behave somewhat eccentric and even odd, but it is not a general rule. odd, but it is not a general rule.

May be solitude but not necessarily to feel May be solitude but not necessarily to feel lonely.lonely.

The most popular case of a The most popular case of a manman

with Asperger Syndrome with Asperger Syndrome „ „I live in that I live in that

solitude which is solitude which is painful in youth, painful in youth, but delicious in but delicious in the years of the years of maturitymaturity”.”.

Albert EinsteinAlbert Einstein

Sir Isaak NewtonSir Isaak Newton

High High Functioning Functioning Autism?Autism?

Asperger Asperger Syndrome?Syndrome?

We can today We can today suppose, that the suppose, that the great scientist great scientist was affected by one was affected by one of of the conditions the conditions placed within placed within Autistic SpectrumAutistic Spectrum

And the contemporary AS And the contemporary AS studentstudent

But…But…

““Until relatively recently few students Until relatively recently few students with autism were provided with the with autism were provided with the opportunity to take part in further opportunity to take part in further educational activities of any kind.”educational activities of any kind.”

by Patricia Howlin, 1998by Patricia Howlin, 1998

Unfortunately, that statement is true for us Unfortunately, that statement is true for us in Poland tooin Poland too, although I can see , although I can see at least at least one student with autism, Asperger one student with autism, Asperger syndrome or related conditions on my syndrome or related conditions on my lectureslectures every year every year,, but they are usually but they are usually undiagnosed undiagnosed and nobody knows, that she or and nobody knows, that she or he he needs aneeds a proper support. proper support. These students These students are unaware their rights too, but they are are unaware their rights too, but they are mainly unaware, that are affected by some mainly unaware, that are affected by some kind of disabilitykind of disability

There are the majors and courses, There are the majors and courses, where we can meet autistic students where we can meet autistic students not only occasionally, but even pretty not only occasionally, but even pretty often, for example: often, for example:

• computer sciencecomputer science• physics, mathematicsphysics, mathematics• musicmusic• althoughalthough I met them studying I met them studying

humanities, education, medical and humanities, education, medical and social sciences as wellsocial sciences as well. .

But oBut only persons with very mild or only nly persons with very mild or only borderlborderliinnee traits of autism/Asperger traits of autism/Asperger syndrome have syndrome have a a chance to fully succeed, chance to fully succeed, anyhow most of them experience a lot of anyhow most of them experience a lot of problems and not necessarproblems and not necessarilily difficulties y difficulties during study time. The individuals with a during study time. The individuals with a serious problems in serious problems in adaptation adaptation often often don’t finish their first semester.don’t finish their first semester.

OOnly in the isolated cases we could nly in the isolated cases we could tell about the full success. tell about the full success. What are What are the reasons?the reasons?

The most important reasonThe most important reason

of the relatively small frequency of of the relatively small frequency of HFA/AS students among graduated is the HFA/AS students among graduated is the fact, thatfact, that in Poland doesn’t in Poland doesn’t exist formally exist formally organizedorganized support system for support system for tertiary tertiary students with Autistic Spectrum students with Autistic Spectrum DisordersDisorders ( ( i.e. i.e. CClassical or lassical or AAtypical typical AAutism and Asperger Syndromeutism and Asperger Syndrome). Autistic ). Autistic Spectrum is not yet enough recognized in Spectrum is not yet enough recognized in terms of specific disability needs and terms of specific disability needs and barriers, so problem of proper barriers, so problem of proper accomodations is constantly unresolved accomodations is constantly unresolved and often completly unrealized.and often completly unrealized.

My students with HFMy students with HFAA and and ASAS

All forms of support that I could give any All forms of support that I could give any student with autism and AS in colleges student with autism and AS in colleges or university, where I am a lecturer, was or university, where I am a lecturer, was based on unformal relations and could to based on unformal relations and could to come into being only for the reason, that come into being only for the reason, that besides I am the psychologist, specialist besides I am the psychologist, specialist in Autistic Spectrum and a coach, often in Autistic Spectrum and a coach, often maintaining help by the Web. It all maintaining help by the Web. It all would be impossible in different would be impossible in different situation.situation.

Supporting students with HFA/AS in Supporting students with HFA/AS in the course of above twenty years let me the course of above twenty years let me to know their needs and barriers, to know their needs and barriers, because I always asked them about it. because I always asked them about it. Sometimes parents were an origin of Sometimes parents were an origin of information as well.information as well. Recently I asked Recently I asked additional persons with SA/HFA studying additional persons with SA/HFA studying different majors, about their perception of different majors, about their perception of being student being student in terms of in terms of advantages/disadvantages. The effect of advantages/disadvantages. The effect of this short opinion poll I find as interesting this short opinion poll I find as interesting for me. I hope that the results will be for me. I hope that the results will be interesting for you too.interesting for you too.

Opinion poll - participantsOpinion poll - participants

• N=32 (30 Males and 12 Females)N=32 (30 Males and 12 Females)• Age range 20-59 yearsAge range 20-59 years• 6 persons with formal HFA/AS diagnosis 6 persons with formal HFA/AS diagnosis

BEFORE attending tertiary schoolBEFORE attending tertiary school• 3 as children got diagnosis: mental 3 as children got diagnosis: mental

retardation and as adults developed retardation and as adults developed briliant scientific careersbriliant scientific careers

• 8 failure to graduate, but some of them 8 failure to graduate, but some of them are making attempt to reach diplomas are making attempt to reach diplomas

• 9 are actually studying in colleges or 9 are actually studying in colleges or universityuniversity

AdvAdvaantagesntages

of studyingof studying

ConcerningConcerning Knowledge, Knowledge, Competencies and Competencies and

ProfessionalismProfessionalism• can realize in depth own special interestscan realize in depth own special interests• maymay to concentrate on the one interesting point to concentrate on the one interesting point• aaccess to lot of data and informative contents ccess to lot of data and informative contents • access to an advanced technology and access to an advanced technology and

apparatus apparatus • the broader application of realizing individual the broader application of realizing individual

projectsprojects• opportunity to interact with scientists and opportunity to interact with scientists and

experts in the areas of interestexperts in the areas of interest• sharing mutual interests and passions with sharing mutual interests and passions with

scientists and artistsscientists and artists

Concerning Self and LifeConcerning Self and Life

• self-fulfillment and dreams fulfillment self-fulfillment and dreams fulfillment • self-recognizing in area of additional self-recognizing in area of additional

strengths and interestsstrengths and interests, better , better self-self-awarenessawareness

• opportunity to became a better and better opportunity to became a better and better

in area of interest in area of interest • appears a chance of meeting a life partner appears a chance of meeting a life partner • completely new fascinating experiencescompletely new fascinating experiences

Concerning Social RelationsConcerning Social Relations

• meeting people with similar interests meeting people with similar interests • developing social competence and social awareness developing social competence and social awareness

• to rise as to rise as a a person attractive for others person attractive for others

• widening social relationship (widening social relationship (more schoolmatesmore schoolmates) )

• developing friendships developing friendships • falling in love falling in love

• involvementinvolvement in charity and voluntar in charity and voluntarisismm

DisadvDisadvaantagesntages of Studyingof Studying

Concerning Adaptation and Concerning Adaptation and Health ProblemsHealth Problems

• HHigh emotional cost of transition igh emotional cost of transition • Difficulties withDifficulties with living outside home living outside home• LLack of effective skills and ways of coping ack of effective skills and ways of coping • UUnexpected changes in schedules and plansnexpected changes in schedules and plans, ,

noveltynovelty• EExhaustive xhaustive style of academic style of academic functiofunctionn• SSomatic or/and mental health problems omatic or/and mental health problems • Sensory problemsSensory problems with environmental with environmental

stimustimulation lation • IIneffective coping with stressneffective coping with stress

Concerning Organizational Concerning Organizational IssuesIssues

• PPoor knowledge about rules, acts, school oor knowledge about rules, acts, school settings, majors, settings, majors, cclasses, study and faculty lasses, study and faculty organizationorganization, ect., ect.

• Problems with orientation in school settingProblems with orientation in school setting• DDifficulties in cooperation with administrative ifficulties in cooperation with administrative

sections and other department institutions, sections and other department institutions, ee..g. dean’s office, libraryg. dean’s office, library

• DDifficulties in properly inclusion into ifficulties in properly inclusion into “department traffic”. “department traffic”.

• ImImpossibility possibility to to resigresignn formally formally from subjects from subjects or courses which are too difficult for a person or courses which are too difficult for a person to complete or to participateto complete or to participate

Concerning Social and Concerning Social and IInterpersonal Issuesnterpersonal Issues

• TToo oo many many people and interactionspeople and interactions, , too too much proximitymuch proximity

• BBeing rejectedeing rejected/mobbing/mobbing by by college/university workers: lecturers, college/university workers: lecturers, instructorsinstructors ora ora administration stuff administration stuff..

• BBeing eing isolated/isolated/rejected by rejected by peer individual peer individual or group or group

• LLoneliness or major problems with peer oneliness or major problems with peer interactions (mobbinginteractions (mobbing, bullying, bullying))

• LLack of interpersonal competenciesack of interpersonal competencies• Lack of Lack of a quiet place a quiet place when feel overloadedwhen feel overloaded

Concerning Educational IssuesConcerning Educational Issues

• PoPooorr understanding lectures and understanding lectures and instructions instructions

• Difficulties with understanding teacher Difficulties with understanding teacher intention and behaviourintention and behaviour

• PProblems with learningroblems with learning and completing and completing taskstasks

• PProblems with materials and topicsroblems with materials and topics• PProblems with tests and examsroblems with tests and exams• PProblems with own traits and habits roblems with own traits and habits

((excessive pexcessive perfectionism, learning rituals, erfectionism, learning rituals, extremely unique learning needs and extremely unique learning needs and style)style)

FailuresFailures

25% 25% ofof HFA/AS participants HFA/AS participants

dropped out dropped out of school of school

What did cause theWhat did cause theirir failures?failures?

Study Skills Immaturity Study Skills Immaturity (100%)(100%)

• PPoor coping with formal duties oor coping with formal duties and obligations and obligations - 7- 7

• Weak self-organization - 5Weak self-organization - 5• CourseCourse uncompleted as too uncompleted as too

difficult or due to conflict with difficult or due to conflict with academic teacheracademic teacher - 8 - 8

• GGetting credit was too much etting credit was too much challengechallenge - 7 - 7

Fragility, weak Self (100%)Fragility, weak Self (100%)

• EExam failure and lost of xam failure and lost of motivation or exam phobia and motivation or exam phobia and giving up giving up - 4- 4

• High level of anxiety - 8High level of anxiety - 8• GGiving up because of feeling iving up because of feeling of of

hopelessness and powerlessness hopelessness and powerlessness - - 88

• Low resilience skills - 5Low resilience skills - 5

Nervous breakdown (75%)Nervous breakdown (75%)

• TToo much stress connected with oo much stress connected with exam session effected break exam session effected break down, depression or the rise of down, depression or the rise of schizophreniaschizophrenia - 4 - 4

• MMental problems were growing ental problems were growing accordingly to cascade accordingly to cascade difficulties and failuredifficulties and failure - 2 - 2

Staff intolarance (50%)Staff intolarance (50%)

• SStudent have been expelled from tudent have been expelled from school rather for staff school rather for staff intolerance and lack of intolerance and lack of acceptance (due to her or his acceptance (due to her or his diversity) than for objective diversity) than for objective offence or any important reasonoffence or any important reason – 4 cases– 4 cases

General tips for General tips for SSupportingupporting1.1. Distribute information about Autism an Distribute information about Autism an

Asperger Syndrome in Higher Education Asperger Syndrome in Higher Education InstitutionsInstitutions

2.2. Organize within Faculty a kind of a „help-Organize within Faculty a kind of a „help-room” for support students when she or he room” for support students when she or he need help for difficulty or problems. need help for difficulty or problems.

3.3. Build self-help and buddy-help system as Build self-help and buddy-help system as well and include it in the work of „help-well and include it in the work of „help-room”. It will be usefull for many situationsroom”. It will be usefull for many situations

4.4. Educate tutors, mentors and teacher in Educate tutors, mentors and teacher in Autistic Spectrum problems, how to solve Autistic Spectrum problems, how to solve the and how the and how

to help student with autism or AS .to help student with autism or AS .

5. Educate staff to cope with problems that 5. Educate staff to cope with problems that result autistic conditions of some studentsresult autistic conditions of some students

6. Let students get informed about 6. Let students get informed about accomodations suitable fo her/his needsaccomodations suitable fo her/his needs

7. Remember, that most young people may be 7. Remember, that most young people may be out of diagnosis and they don’t perceive out of diagnosis and they don’t perceive themself as disabledthemself as disabled

8. Join student with autism in the group work in 8. Join student with autism in the group work in any domain as scholar research, social, art, any domain as scholar research, social, art, sports, charity, journalism, ect. Give her or him sports, charity, journalism, ect. Give her or him tasks consistent with her/his high abilities, tasks consistent with her/his high abilities, interest or passion. Give her/him chance to interest or passion. Give her/him chance to succed.succed.

More detailed, disability More detailed, disability oriented strategyoriented strategy

• School aSchool accommodationsccommodations• Exam concessionsExam concessions• Monitoring and supporting studentMonitoring and supporting student• Monitoring social relationsMonitoring social relations• Elements of individualized teaching and Elements of individualized teaching and

student’s study organisationstudent’s study organisation• Help in stress managementHelp in stress management• Taking ASD pecularities into consideration in Taking ASD pecularities into consideration in

educational processeducational process• Cooperation with Disability Center and Cooperation with Disability Center and

guidance servicesguidance services

Andy Warhol, famoust painter and Andy Warhol, famoust painter and pop-art. author, also a person with pop-art. author, also a person with ASD (Autistic Spectrum Disorder)ASD (Autistic Spectrum Disorder)

Albert Einstein in Warhol’s Albert Einstein in Warhol’s mannermannerby meby me ;) ;)

Let,s help them to Let,s help them to fulfill their fulfill their potentialpotential

Thank YouThank You

Presented byPresented by

Renata Stefańska-KlarRenata Stefańska-Klar, , PhDPhD

Silesian University, KatowiceSilesian University, Katowice

Faculty of Ethnology and Sciences of Faculty of Ethnology and Sciences of

Education, CieszynEducation, Cieszyn

[email protected]@gmail.com

ReferencesReferences

• Attwood, T. (1998) Attwood, T. (1998) Asperger’s syndromeAsperger’s syndrome. London: Jessica . London: Jessica Kingsley Publishers. Kingsley Publishers.

• Baker L.J.. Welkowitz L.A (2005) Asperger'sBaker L.J.. Welkowitz L.A (2005) Asperger's Syndrome: Syndrome: Intervening in Schools, Clinics, and Communities, Intervening in Schools, Clinics, and Communities, Lawrence Lawrence Erlbaum Associates.Erlbaum Associates.

• Barnard.J., et al (2001). Barnard.J., et al (2001). Ignored or ineligible? The reality for Ignored or ineligible? The reality for adults with autistic spectrum disorders.adults with autistic spectrum disorders. London. The National London. The National Autistic Society.Autistic Society.

• Baron-Cohen, Simon. "Is asperger syndrome/high-functioning autism Baron-Cohen, Simon. "Is asperger syndrome/high-functioning autism necessarily a disability?" necessarily a disability?" Development and PsychopathologyDevelopment and Psychopathology. 2000 . 2000 Summer;12(3) Summer;12(3)

• Frith U.(ed.)(1993) Frith U.(ed.)(1993) Autism and Asperger SyndromeAutism and Asperger Syndrome, Cambridge, Cambridge• Gillberg, I.C. and Gillberg, C. (1989) Asperger syndrome – some Gillberg, I.C. and Gillberg, C. (1989) Asperger syndrome – some

epidemiologicalepidemiological considerations. A research note. considerations. A research note. Journal of Child Journal of Child Psychology and Psychiatry, Psychology and Psychiatry, vol 30vol 30

• Grandin T. (1995)Grandin T. (1995)Thinking in PicturesThinking in Pictures Random House, New York Random House, New York• Howlin, P. (1997) Howlin, P. (1997) Autism – preparing for adulthoodAutism – preparing for adulthood. London: . London:

Routledge.Routledge.

ReferencesReferences cont(d)cont(d)

• Lawson J, Baron-Cohen S, Wheelwright S.(2004) Lawson J, Baron-Cohen S, Wheelwright S.(2004) "Empathising and systemising in adults with and "Empathising and systemising in adults with and without Asperger Syndrome." without Asperger Syndrome." J Autism Dev Disord.J Autism Dev Disord. Jun;34(3)Jun;34(3)

• Powell.A. (2002) Powell.A. (2002) Taking Responsibility. Good practice Taking Responsibility. Good practice guidelines for services – Adults with Asperger guidelines for services – Adults with Asperger syndromesyndrome. . The National Autistic Society. London.The National Autistic Society. London.

• Stefańska-Klar R (2005) Stefańska-Klar R (2005) Asperger Syndrom – Asperger Syndrom – abnormality, highly orabnormality, highly oriiginal diversginal diversiity or simply extreme ty or simply extreme expression of some individual differences?expression of some individual differences? Paper from Paper from proceedings on XXXII Polish Psychological Association proceedings on XXXII Polish Psychological Association Scientific Convention, Kraków 22-25.09.2005. Scientific Convention, Kraków 22-25.09.2005.

• Stefańska-Klar R (2005) Stefańska-Klar R (2005) Unknown, unwanted, devoid of Unknown, unwanted, devoid of proposals On studentproposals On student’s’s with Asperger system place in with Asperger system place in PPolish system of education.olish system of education. Paper from International Paper from International Conference „Education in tumultuous environment”, Conference „Education in tumultuous environment”, Silesian University, Cieszyn 5-6.12 2005. Silesian University, Cieszyn 5-6.12 2005.

References References cont(d)cont(d)

• Stefańska-Klar R. (2003) Albert Einstein, Izaak Newton i Stefańska-Klar R. (2003) Albert Einstein, Izaak Newton i Zespół Aspergera. Zespół Aspergera. Psychologia i RzeczywistośćPsychologia i Rzeczywistość, 2., 2.

• Stefańska-Klar R. (2001) Problemy studentów z cechami Stefańska-Klar R. (2001) Problemy studentów z cechami autyzmu autyzmu „Światło i Cienie” „Światło i Cienie” 3. 3. (The problem of (tertiary) (The problem of (tertiary) students’ with autistic tendencies). students’ with autistic tendencies).

• Stefańska-Klar R.(1998Stefańska-Klar R.(1998) Doświadczanie przemocy przez ) Doświadczanie przemocy przez osoby autystyczne - granice subiektywizmu i ich znaczenie osoby autystyczne - granice subiektywizmu i ich znaczenie dla obiektywnych konsekwencjidla obiektywnych konsekwencji. W: J. M. Stanik, Z. . W: J. M. Stanik, Z. Majchrzyk /red/ Przemoc w rodzinie: diagnoza, Majchrzyk /red/ Przemoc w rodzinie: diagnoza, orzecznictwo, profilaktyka. orzecznictwo, profilaktyka. Wydawnictwo Anima, Katowice Wydawnictwo Anima, Katowice (Experience of violence by persons withe autism) (Experience of violence by persons withe autism)

Photos usedPhotos used

• Photos of young man witPhotos of young man withh AS by Galen Smith AS by Galen Smith (CC (CC

license)license)• Photos of A. Einstein and A. Warhol Photos of A. Einstein and A. Warhol exposition exposition aas well as a reproduction of s well as a reproduction of Sir Sir IIsaak saak Newton portrait are available Newton portrait are available free free

from from Wikipedia Wikipedia resources resources • Graphic”Albert Einstein in Warhol maner” by Graphic”Albert Einstein in Warhol maner” by Renata Stefańska-Klar, Renata Stefańska-Klar,

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