NEEDS AND BARRIERS FOR PERSONS WITH ASD THE ... -...

NEEDS AND BARRIERS FORPERSONS WITH ASD

THE INNER BARRIERS

Donata Vivanti

Autism-Europe

THE CHALLENGES OF ASDINNER BARRIERS:• The extreme diversity of autism:

core features– Social deficits– language impairments– Strange, sometimes challenging behaviour

• Invisibility : underestimating the impairmentsENVIRONMENTAL BARRIERS• Preconception and Stigma:

misunderstanding the needs• Lack of proper habilitation and support

THE EXTREME DIVERSITYOF AUTISM

There are morethings in heavenand earth,Horatio, than aredreamt of inyour philosophy.

Social Impairments in Autism

• Are unique among human beings andsuperior animals

• Are the most important features fordiagnosis

• Change with time and developmental levelbut are the source of severe disability evenin the highest functioning adults

Very young children:looking at people’s faces

Very youngchildren:

thinking aboutpeople

Autism:Unlike in typical development,predispositions to orient topeople are absent or severelyimpaired.

Understanding an Ongoing Social Context

Looking at Faces

Standing behind a person’s eyes

EYE TRACKING STUDIES

Klin, Jones, Schultz, Volkmar, & Cohen (2002). American Journal of Psychiatry, 159, 895-908.

Viewer with autismAge: 38, IQ: 119,

Vineland Socialization: 69

Typical ViewerAge: 27, IQ: 110

Tracing a Romantic Triangle

Focus on mouths vs. focus on eyes

Toddler at risk of having autism Typically-developing toddler

Visual Fixations during Naturalistic Viewing

11

43

32

22

38

2317

14

0

10

20

30

40

50

mouth eyes body object

% o

f to

tal v

iew

ing

time

Infants at risk of having autism (N = 5) Typically-developing infants (N = 6)

2-year-olds with autism and typically developing

Group Data

RECOGNISING FACES

Are the same of different persons?

RECOGNISING THEBIOLOGICAL MOVEMENT

Spotlights reproducing the biological movement

Attributing Social Meaning toMoving Objects

Male, typically developing, age 13,IQ 112

What happened was that the larger triangle -- whichwas like a bigger kid or a bully, and he had isolatedhimself from everything else until two new kidscome along and the little circle was a bit more shy,scared, and the smaller triangle more like stood upfor himself and protected the little circle. The bigtriangle got jealous of them, came out, and started topick on the smaller triangle. The little triangle gotupset and said like “what’s up”? “why are you doingthis” ? .......

Male, Autism, age 14, IQ 115

• The big triangle went into the rectangle. Therewere a small triangle and a circle. The big trianglewent out. The shapes bounce off each other. Thesmall circle went inside the rectangle. The bigtriangle was in the box with the circle. The smalltriangle and the circle went around each other afew times. They were kind of oscillating aroundeach other, maybe because of a magnetic field.After that they go off the screen. The big triangleturned like a star – like a Star of David – andbroke the rectangle.

MIND BLINDNESSA WORLD WHERE :• People speaks to us, but we do not understand,• We never know what is going to happen,• Things happen in a chaotic way, without any order

or predictability,• Our attention is captured and absorbed by

spinning objects, flowing water or an air faninstead than by people’s …

(Therese Joliffe, 1992)

COMMUNICATIONIMPAIRMENT IN AUTISM

• All forms of communication• Incuding communication intention• Both expressive and receptive

EXPRESSIVE AND RECEPTIVECOMMUNICATION

• First features identified by parents– Expressive communication : absence or

regression of language (Tager-Flusberg et al.,2005)

• First features identified by researchers :– Receptive communication: no answer when

called by first name at 12 months(Nadig et al., Arch Pediatr Adolesc Med,2007).

EXPRESSIVE COMMUNICATIONIN AUTISM

• Dumbness (50%)• No compensation strategies• Echolalia• Monotone voice, no emotional expression• Difficulties in conversation (alternatively

speaking)

RECEPTIVE COMMUNICATIONIN AUTISM

• More affected than expressivecommunication

• Impaired understanding of gestures• Verbal understanding strictly linked to the

context• Compensation strategies (relying on routines

and visual skills)

AUDITORY PREFERENTIALORIENTATION

• Preferential orientation to the mother tonguesounds in tipically developing children

• No preferential orientation to mother tonguesounds in autism

OTHER FEATURES

• Obsession (sameness)• Sensory abnormalities

- abnormal sensitivityto pain

• Motor deficits(clumsiness)

• Stereotypedmovements - tics

Developmental Trajectories inAutism

Major difficulties in:• Understanding others• understanding environmentchallenging behaviours

• Understanding others• Imitating others• Learning from others cognitive disability

CHALLENGING BEHAVIOURS

•Self-mutilation 30 - 70 %

•Escape

•Aggression

•Inappropriate Sexual Behaviour (Stalking)

•Destruction, inappropriate use of objects

•Obsession

» EXCLUSION, SECLUSION

•Pain, sickness•Social and Communicationimpairments, Invisibility

Difficulties in:•Understanding others•Understanding environment•Meeting unrealistic expectancies

CHALLENGINGBEHAVIOURS

CHALLENGING BEHAVIOURS

• Not only in autism• Not always in autism• Can be prevented• Caused by insufficient,

inadequate care or neglect• When occurring likely cause

exclusion, seclusion, adversetreatments

DECLOC STUDY

DEinstitutionalisation and Community Living: Outcomes and Costs

• Cost for residential service in the community =400 Euros/week

• Cost for adults with challenging behaviours =2000 Euros /week (80% Staff)

(Economic School of London)

COGNITIVE DEVELOPMENTIN AUTISM

• 50 - 75% have learning disability• Rare “Idiots savants”• Learning disability in autism

– not an associated disorder (family studies)– the consequence of

• the severity of core symptoms• lack of proper intervention (studies on

outcomes of early intervention)

SOCIAL/COGNITIVE FUNCTIONINGTHE MIRROR NEURONS

Mirror neurons• discharge both when the person:

– executes a specific motor act– observes another doing a similar act– only if the observed motor act is

part of a specific motor chain (e.g.grasping-to-eating).

• allow the observer to understandthe individual’s intention.

Monkeyperforms

action

Monkeysees

action

SOCIAL/COGNITIVE FUNCTIONINGTHE MIRROR NEURONS

Persons with autism• Show lower activation

of mirror neurons,• fail to recognize the

why of an action.• lack experiential

understanding of others• rely on external

factors.

• Giacomo Rizzolatti, M.D., University of Parma, It.• Sally J Rogers, PhD, & David Amaral, M.D.,

M.I.N.D. Institute, Universiy of California Davis,Ca, USA

• Laura Schreibman, PhD, University of CaliforniaSan Diego, Ca, USA

• Giacomo Vivanti, PhD, La Trobe University,Melbourne, Australia

• Fred R. Volkmar, M.D. Child Study Center,Universita’ di Yale, CT, USA

AKNOWLEDGEMETS

NEEDS AND BARRIERS FORPERSONS WITH ASD

THE ENVIRONMENTALBARRIERS

PREJUDICES AND STIGMA

Donata Vivanti

Autism-Europe

18-07-2011 D. Vivanti - Autismo Italia

THE ENVIRONMENTALBARRIERS

• Prejudices and stigma• Inadequate / insufficient habilitation

/education programmes• Inadequate /insufficient support


PREJUDICES AND STIGMA

• Autism is caused by mother’s attitude• Persons with ASD are

– Hidden geniuses closed in the autisticshell

– Untreatable, uneducable– Dangerous like a bomb ready to explode

AVEYRON, 1801:THE CASE OF VICTOR

(Jean Itard)

• Does not speak• Does not socialize• Wants objects to be always in the

same place• Tantrums, aggression• Pulls the hand of the adult

towards the wanted object whenhe wants something

THE CONCEPT OF AUTISM

Leo Kanner1943• congenital incapacity

to normally interactwith others

1956• An atypical

relationship withparents at the origin ofthe disorder

THE CONCEPT OF AUTISM

Hans Asperger, 1944

• A different way to be

• Genetic basis

• Educational intervention

Bruno Bettelheim, 1967

• Autistic children choose to livein their own world to protectthemselves from oppressivemothers

• Confusion with schizofrenia

THE CONCEPT OFAUTISM

AUTISM TODAY: BRAIN DISORDER

• Studies on associated diseases(Donald Cohen)

• Studies on genetics (Sir Michael Rutter)

• Studies on parenthood (Catherine Lord)

AUTISM TODAY

• Primary impairment of social skills• Primary impairment of verbal and

non-verbal communication• Restricted, repetitive behaviours,

activities and interests (WHO, 1993; APA,2001)

THE AUTISTIC SPECTRUM

LORNA Wing, 1989:

• Heterogeneity of psychological profiles:– Aloof– Passive– Active but odd

• Heterogeneity of conditions:a spectrum of condition

Da G. Vivanti, Firenze, 2010

AUTISTIC SPECTRUM

5 DISORDERS

• Autism• Asperger syndrome• Rett syndrome• Childhood Disintegrative Disorder (Heller

syndrome)• Pervasive Developmental Disorder Not

otherwise Specified (PDD-NOS)

AUTISTIC SPECTRUM /BROAD PHENOTYPE

HFA / Aspergersyndrome:

• IQ = or > average

• diagnostic criteriaare met

•Disability

Broad autisticphenotype:

• Some similar features• not sufficient to meet the

diagnostic criteria• Often seen in relatives

• No disability

Circuitry of the Social Brain

AUTISM TODAY: DISORDER OF THE BRAIN

Association with

• Specific neurological diseases (tuberoussclerosis, neurofibromatosis)

• Epilepsy (30-40%) (onset in adolescence orearly adult life)

AUTISM TODAY: DISORDER OF THE BRAIN


WHAT CAUSES AUTISM?GENETICS

Genetic origin confirmed by :• Twins studies• Family prevalence studies• Male/female ratio• Association with genetic diseases ((tuberous

sclerosis, phenylchetonuria, neurofibromatosis,X Fragile syndrome)

• Genetic abnormalities


GENETIC ABNORMALITIESSEEN IN ASD

The “autism genome project” (AGP) on 1000individuals with ASD

• confirmed gene mutations associated withASD

• Affected genes are all involved in neuronalorganization and neuronal migration.

Errors in these genes affect the developmentof the brain

WHAT CAUSES AUTISM ?ENVIRONMENTAL FACTORS

Environmental factors are likely to beimplicated in causation.

• Historical and recent studies on prenatalexposures– Rubella– valproic acid– thalidomide– pesticides ?

• New studies on circulating maternal antibodies& animal models


EN VIRONMENTAL RISKFACTORS

• IgG antibodies in 40%mothers of children withautism– Directed against foetal

brain cells– Mainly in mothers of

children with“regressive” autism


IMMUNE SYSTEM AND AUTISM

Maternal anti-foetal brainantibodies injected inpregnant mice:

Social disorders inoffspring– isolation– hyperactivity


IMMUNE SYSTEM AND AUTISM

Maternal anti-foetal brainantibodies injected inpregnant monkeys

stereotyped movements in100% offspring– Flapping– Spinning objects– Rocking


WHAT DOES NOT CAUSEAUTISM?

• Freezing mothers (or parents)• Sensory/motor abnormalities• Bowel infections or abnormal bowel

absorbance• Vaccines (MMR), mercure• Disorders of the child’s immune system

THE CHALLENGE OF ASD

60/1000 (1/156) people have an ASD

IS THE ASD RATE RAISING? NObut

YES, more cases of ASD have beenrecognized as

• diagnostic criteria broaden• awareness increases

ASD AS A PRIORITY

A PRIORITY AT INTERNATIONAL LEVEL

• USA : $1 billion in federal funding for ASD “toguarantee that Americans with ASD can liveindependent and fully productive lives”

• United Nations: International Day of Autism (2April)

ENVIRONMENTAL BARRIER

• Shortage of appropriate intervention andsupport results in …

• Further disabilities• Many people becoming unnecessarily dependent• Exclusion in segregating settings

(Coe Committee Of Ministers’ Recommendation No. R (92) 6On A Coherent Policy for PwD)

• Sally J Rogers, PhD, & David Amaral,M.D., M.I.N.D. Institute, Universiy ofCalifornia Davis, Ca, USA

• Laura Schreibman, PhD, University ofCalifornia San Diego, Ca, USA

• Giacomo Vivanti, PhD, La TrobeUniversity, Melbourne, Australia

• Fred R. Volkmar, M.D. Child StudyCenter, Universita’ di Yale, CT, USA

AKNOWLEDGEMETS

RISKS OF SPECIFICDISCRIMINATION OF

PERSONS WITH AUTISM

DONATA VIVANTI

AUTISM EUROPE

15/12/2008 D. Vivanti 2

FIELDS OF DISCRIMINATION

• Education• Inclusion

15/12/2008 D. Vivanti 3

COLLECTIVE COMPLAINTAUTISM EUROPE VS. FRANCE

• The proportion of children with autismbeing educated in either general or specialistschools is much lower than in the case ofother children, where disabled or not.

• …there is a chronic shortage of care andsupport facilities for autistic adults

15/12/2008 D. Vivanti 4

REPORT OF THE COMMITTEEON THE EDUCATION AND INTEGRATION OF

CHILDREN WITH AUTISM

The particular challenge of ASD• Major communication problems leading to

severe cognitive impairment• Challenging behaviour arising from the

interaction with the environment

15/12/2008 D. Vivanti 5

FIELDS OF DISCRIMINATION

• Vocational trainingand employment

15/12/2008 D. Vivanti 6

DISCRIMINATIONOF PERSONS WITH ASD

IN VOCATIONAL TRAINING / EMPLOYMENT

• A minority (37%) receive professional and/orcontinuous training

• The majority (61,5%) do not want to or cannotwork

• Almost all are absent from the labour market

Survey on the employment of persons with autism andother complex dependency needs disabilities (Autism-Europe, 2002)

15/12/2008 D. Vivanti 7

FIELDS OF DISCRIMINATIONOF PERSONS WITH ASD

• Socialhabilitation

15/12/2008 D. Vivanti 8

HABILITATION ANDREHABILITATION

• More than 1/3 (37.9%) never accessed any(re)habilitation programme

• More than half (53.6%) of the (re)habilitationprogrammes were not provided any more afterchildhood

Survey on discrimination of persons with ASD inthe field of health care and habilitation (Autism-Europe, 2002)

15/12/2008 D. Vivanti 9

RISK OF DISCRIMINATIONAND ABUSE

• Unable to communicate(choice, wishes, dissatisfaction)

• Unable to self-advocate• Unable to protest risk of unacceptable practices or neglect

NEED FOR SUPPORT OFPERSONS WITH ASD

Donata Vivanti

Autism-Europe

12/07/2011 D. Vivanti - Autism-Europe 2

THE RIGHTS BASED APPROACH TO ASDTHE RIGHTS BASED APPROACH TO ASD

• The enjoyment of fundamental rights ( healthcare,habilitation, life-long education) ought to befurthered through the provision of multi-disciplinary support

• A shift from exclusion to inclusion, frommarginalisation to integration must pass through therecognition of the special needs

(CoE Commissioner for human rights, Copenhagen, 2003 )


THE NEED FOR PROPER SUPPORTTHE NEED FOR PROPER SUPPORT

• Individuals with disabilities who, due to the severityand complex nature of their impairment, require a highlevel of support … require intensive andpermanent quality services

• Their quality of life is very much dependenton the availability of appropriate and qualityservices that respond to their … needs

(Coe Committee Of Ministers’ Recommendation on DisabilityAction Plan 2006-2015)


SOCIAL/COGNITIVEDEVELOPMENT IN AUTISM

• Challenging behaviours• Learning disability in Autismcan be prevented by means of

– Timely, intense, adequate care– Alternative/augmentative communication

modes– Reasonable accommodation (structured

settings)


ENSURING EQUALOPPORTUNITIESTO PERSONS WITH ASD

• Evidence-based intervention• Individually tailored, flexible approach

and support• Based on individual assessment• In the respect of fundamental rights


BARRIERS IN SOCIETYNEGLECT

Shortage of appropriate intervention andsupport

• Further disabilities (MR 80% vs 50% withextensive & intensive support programmes)

• Life-long (unnecessary) dependency• Exclusion in segregating settings

WHAT MAKES A QUALITYSERVICE?

• Flexibility (individualised intervention)• Rights-based approach• Person-centred approaches

– Planning– Active support


APPROPRIATE APPROACH TOASD

• Health care and habilitation are crucial tothe needs of persons with ASD

• THE SOCIAL APPROACH TO ASDDOES NOT EXEMPTE HEALTHSYSTEM TO PROVIDE APPROPRIATEONGOING HEALTH CARE ANDSOCIAL HABILITATIONPROGRAMMES.


APPROPRIATE INTERVENTION

Health care intervention:• Early diagnosis• Multi-dimensional functional assessment• Individual planning• General and associated health problems


THE “CHAIN REACTION”(how one form of harm causes another and then another…)

• Starting point: the failure to diagnose autismleading to

• Inadequate careleading to

– challenging behaviours, aggression– physical /pharmacological abuse

– Increasing learning disability– Dependency, institutionalisation


APPROPRIATEINTERVENTION

Social habilitation is needed to develop:• Social and communication skills• Adaptive behaviours• Aimed at achieving the higher level of

independence, inclusion, participation, self-determination

• Using appropriate intervention strategies


RIGHTS-BASED SERVICES FORPERSONS WITH ASD

• NO, do not considerpersons with ASD as aburden• NO, do not providesimply a caregiving• NO, do not rely onmere application oftechniques

• YES, they are inspired to anew way of seeing personswith ASD as subjects ofrights

• YES, they apply properhabilitation strategies

• YES, they are centered onthe person, its aspirations,strengths and needs

Sanderson (2000) Sanderson (2000) www.www.dohdoh..govgov..uk/vpst/pcpuk/vpst/pcp..htmhtm


APPROPRIATE INTERVENTIONSTRATEGIES

• Based on strengths of persons with ASD(visual skills) : alternative/augmentativecommunication modes

• Providing the reasonable accommodationsneeded– Structured setting– Structured agenda– Structured activities


PERSON-CENTRED APPROACH

NO, it is not simply a collection of newtechniques for planning.

YES, it is a process• focussed on what is important to someone

now, and for the future• fostering independence and choice• in alliance with family and friends.


ACTIVE SUPPORT

Providing the help needed to enable each person:• to participate successfully in meaningful activities

and relationships (engagement),• to gain :

• more control over their lives,• more independence• more inclusion as a valued member of the

community,• irrespective of degree of impairments or extra

problems


WHAT DISENGAGEMENT MEANS

Examples of disengagement

• just sitting or standing• pacing about aimlessly• sitting in the car• not acknowledging orresponding to contact• rocking, finger-flicking


ENGAGEMENT INMEANINGFUL ACTIVITY

Some examples of engagement

• cutting the grass• putting items onto the

supermarket checkout• swimming• polishing furniture• delivering newspapers• Washing car• …No person is so severely disabled to have no strengths

No context is so poor to have no resources.


WHY IS ENGAGEMENTIMPORTANT?

• Improves lifestyle and quality of life• Enhance self- and other people’s esteem• Provides a route to achieve Inclusion,

Independence and Choice• experience underpins development

(developmental perspective ofintervention)


DEVELOPMENTAL PERSPECTIVEOF INTERVENTION

• Brain plasticity is notlimited to infancy

• The environmentshapes the brain atevery age

• Learningcompetences modifythe brain


DEVELOPMENTAL PERSPECTIVEOF INTERVENTION

TOWARDS AND ADULT LIFE ASFULFILLING AND HAPPY ASANYONE ELSE’S

THE ASD PERSPECTIVE INTHE EDF

WORKPROGRAMME

Donata Vivanti

Autism’Europe

EC EXAMINATION OFTHE IMPACT OF THE

EMPLOYMENT DIRECTIVE

• The EDF contribution should stress• the discrimination of the most excluded

population in accessing and maintaining ajob in the open labour market,

• people with disabilities who do not look fora job even as they feel that they could neverget or maintain it.

EC EXAMINATION OFTHE IMPACT OF THE

EMPLOYMENT DIRECTIVE

• Ensure that the right to reasonableaccommodation is guaranteed not only atthe work place but also in vocationaltraining facilities

DEFINING THE QUALITYOF JOBS

• Quality of work should be linked toappropriateness and should be defined asthe most adapted job for the person,according to the individual skills,preferences and wishes

AWARENESS RAISING ONTHE LABOUR MARKET

SITUATION OF PWD

• Indicators need to be developed to check thesituation of people with disabilities who donot look for a job even as they feel that theycould never get or maintain it.

INCREASE THE MOBILITYOF PEOPLE WITH

DISABILITIES

• The concepts of accessibility andreasonable accommodation should beadapted to the needs of persons with ASD,as potentially reducing their need forsupport and enhancing rheir independenceand participation.

EQUAL OPPORTUNITIESTO LIVE INDEPENDENTLY

• Persons with ASD require intensive,ongoing social habilitation programmes inorder to achieve the competence to liveincluded in society and the capacity to makeinformed choice

ENHANCE ACTIVEINCLUSION OF PERSONS

WITH DISABILITIES

• Persons with ASD have a higher risk ofunemployment, poverty and social exclusioneven among persons with disabilities. Theassessment of the implementation of activeinclusion strategies should thereforeparticularly focus the inclusion of thesepopulation.

ENHANCE EFFORTS TOWARDSTHE TRANSITION FROM

INSTITUTIONAL TOCOMMUNITY-BASED CARE

• Without social habilitation programmes personswith ASD will never achieve the social skillsneeded to live included in their communities, andwill continue to be secluded, regardless thedimension of the alternative service where theyare integrated or even in their families. Thequality of services should therefore include theprovision of intensive, ongoing and individuallytailored habilitation or rehabilitation programmes

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