Conference Programme
9th and 10th January 2015
City North Hotel, Dublin
Patricia Daly
Richard Grinker
Tony Attwood
Peter Vermeulen
Name
Organisation
Damian Milton
Sponsors / Exhibitors
Middletown Centre for Autism
wish to acknowledge & thank
the City North Hotel for their
support & hospitality during the
conference
INTRODUCTION
INTRODUCTION
Conference
ConferenceProgramme
Programme
th
and10
10ththJanuary
January2015
2015––City
CityNorth
NorthHotel,
Hotel,Dublin
Dublin
99th and
Welcome
I
have great pleasure in welcoming
you to the City North Hotel,
the venue of Middletown Centre
for Autism’s first international
conference. At the outset, I would like
to record my thanks to the Conference
Planning Committee who have been
planning this two day conference for
over a year.
their children and young people with
autism.
The focus of the conference is on
“Enabling Education”, which is a
task shared by parents and those in
education. By working together, we can ensure the best possible
outcomes for our children and young people with autism.
A wide range of international speakers will present over the
next two days. In addition, practitioners from both Northern
Ireland and the Republic of Ireland will present on elements
of good practice that are being delivered across the island on a
daily basis. This will also include information on the Centre’s
research programme focusing on aspects of the Centre’s
Learning Support and Assessment Service. The response to this
conference has been phenomenal with booking having to close
within 3 days of opening. This is indicative of the value parents
and professionals place on training regarding the education of
I have no doubt that you will find
the next 2 days both enjoyable and
informative, as well as challenging;
challenging in the context of seeking to
support and deliver services in a more
meaningful and effective way despite
limitations on resources and ongoing
financial difficulties.
During your time at the Conference,
I would encourage you to visit the
exhibitor stands including a number from the voluntary
sector. Additional information on services available from the
Middletown Centre for Autism is available from the Centre’s
website at www.middletownautism.com. The Centre offers an
extensive range of training courses on autism across the island
for both parents and educational professionals.
Finally a word of thanks to the Centre’s sponsoring bodies,
the Department of Education, Northern Ireland and the
Department of Education and Skills, Ireland.
I hope that you enjoy the conference and look forward to
welcoming you to some of the Centre’s other training events
throughout the year.
Gary Cooper
CEO
PROGRAMME
PROGRAMME
Conference Programme
9th and 10th January 2015 – City North Hotel, Dublin
Day 1
Friday 9th January 2015
8.30 – 9.15 Registration
9.15 – 9.35 Welcome and Introduction
9.35 – 10.30 Professor Roy Richard Grinker - The Effects of Culture on the Prevalence of Autism
10.30 – 10.50 Coffee Break
10.50 – 11.50 Session 1 - Seminars
Seminar A - Somerville Suite
Damian Milton - Bridging the Gap: navigating the ‘double empathy problem’
in educational practice with pupils and students on the autism spectrum
Seminar B - Whitewood 2&3
Dr Peter Vermeulen - Autism as Context Blindness
Seminar C - Whitewood 1
MCA / Research - Transdisciplinary Approach
11.55 – 12.35 MCA Learning Support and Assessment Service – Parent and School Perspectives
12.35 – 1.15
Lunch
1.15 – 2.30 Best Practice Presentations: Schools share their practice
2.30 – 2.40 Comfort Break
2.40 – 3.40 Session 2 – Seminars
Seminar D - Somerville Suite
Professor Roy Richard Grinker - The Effects of Culture on the Prevalence of Autism
Seminar E - Whitewood 2&3
Dr. Peter Vermeulen - Autism as Context Blindness
Seminar F - Whitewood 1
MCA / Research - Transdisciplinary Approach
3.45 – 4.30 Damian Milton - Intervening with what? A critical examination of educational
ideology and related practices for children on the autism spectrum
4.30 Close
Conference Programme
9th and 10th January 2015 – City North Hotel, Dublin
Day 2
Saturday 10th January 2015
8.30 – 9.15 Registration
9.15 – 9.30 Welcome
9.30 – 11.15 Professor Tony Attwood - Managing Feelings: Cognitive behaviour therapy to manage anxiety,
sadness and anger
11.15 – 11.30 Coffee Break
11.30 – 11.40 MCA Learning Support and Assessment Service - Parent Perspective
11.40 – 12.40 Dr. Patricia Daly - Promoting Self Management and Self Regulation in Young People with Autism
12.45 – 1.30 Lunch
1.35 – 2.35 Dr. Peter Vermeulen - Autism and Happiness: Mission (Im)possible?
2.35 – 2.50 Coffee Break
2.50 – 4.20 Professor Tony Attwood - Managing Challenging Behaviour in Children with Autism
4.20 – 5.15 Interview Panel
Dr Peter Vermeulen, Dr Patricia Daly, Professor Tony Attwood
5.15Close
SPEAKERS
SPEAKERS
Conference Programme
9th and 10th January 2015 – City North Hotel, Dublin
Professor Richard Grinker
Dr. Richard Grinker is a Professor and Chair of Anthropology
and the Human Sciences and Director of the Institute for
Ethongraphic Research at George Washington University.
He earned his M.A. and Ph. D in Social Anthropology
from Harvard University. Since 2001, he has additionally
served as Editor-in- Chief of Anthropological Quarterly, and
is a founding member of the Center for Disease Control
and Prevention’s Global Program on the Epidemiology of
Developmental Disabilities. He has written and co-authored
numerous Autism-Related articles both in the United States and
internationally, in journals such as Autism Research, the Journal
of Autism and Developmental Disorders, and the American
Journal Psychiatry. Current work includes collaboration with
David Mandell on the study of services for Koreans with autism
in New York City. He has also published in mainstream news
sources such as The Wall Street Journal, The Washington Post,
the New York Times, and US News and World Report. To
date, he has authored five books, including Unstrange Minds:
Remapping the World of Autism, for which, he won the 2008
KEN award from the National Alliance on Mental Illness.
Grinker is a parent of a daughter with autism. He lectures
widely at universities and to parents and professionals.
Damian Milton
Dr Peter Vermeulen
Damian is currently studying for a doctorate with
the Autism Centre for Educational Research at
the University of Birmingham. He is a member of
the Programme Board for the Autism Education
Trust, and a member of the Scientific and Advisory
Committee for Research Autism. Damian currently
works as a Research Assistant for London South Bank
University, and for the National Autistic Society as a
lead consultant for the ‘Ask Autism’ project. Damian
holds a number of academic qualifications in a range of
subjects: Sociology, Philosophy, Psychology, Education,
and has a number of years of experience as a lecturer
in both FE and HE. Damian’s interest in autism began
when his son was diagnosed in 2005 as autistic at the
age of two. Damian was also diagnosed with Asperger’s
in 2009 at the age of thirty-six.
Dr Peter Vermeulen is an educationalist who has
worked for many years with people with autism. He
worked for the Flemish Autism Association, where
he was the Director of the Flemish Home Training
Services. At present, he is Autism Consultant and
Lecturer at Autisme Centraal, where he also edits the
bi-monthly magazine “Autisme Centraal”. He is the
author of 15 books and many articles on autism. His
books have been translated into a variety of different
languages. Peter has a special interest in how people
with and without autism think about the world and
how these different cognitive styles can meet each other.
Conference Programme
9th and 10th January 2015 – City North Hotel, Dublin
Dr Patricia Daly
Professor Tony Attwood
Born in Cork, Dr Patricia Daly is a graduate of UCC,
taught in Adamstown (Co.Wexford) and Macroom
(Co. Cork), and completed the Post-Primary Remedial
course at St. Patrick’s College, Drumcondra in 1978.
She completed an M.A. in Emotional & Behavioural
Disorders (1982) and a Ph.D. in Applied Behaviour
Analysis at Ohio State University in 1986. Patsy
worked in Undergraduate and Graduate Special
Education in the US at Miami University of Ohio,
Central Michigan University, and Ohio Dominican
University from 1986 until 2006 when she returned
to Mary Immaculate College to direct the Graduate
Diploma in SEN. Patsy is currently Head of the
Department of Special Education and Co-Principal
Investigator of a NCSE National Study on Education
Provision for Children with ASDs in Ireland.
Tony is a clinical psychologist who has specialised
in autism spectrum disorders since he qualified as a
clinical psychologist in England in 1975. He works
in his own private practice, and is also adjunct
professor at Griffith University, Queensland and senior
consultant at the Minds and Hearts clinic in Brisbane.
His book Asperger’s Syndrome – A Guide for Parents
and Professionals has sold over 350,000 copies and
has been translated into over 25 languages. He has
worked with over 8,000 individuals of all ages with
Asperger’s syndrome or an Autism Spectrum Disorder.
Tony presents workshops and runs training courses for
parents, professionals and individuals with Asperger’s
syndrome all over the world and is a prolific author of
scientific papers and books on the subject. His book
The Complete Guide to Asperger’s Syndrome was
published in October 2006 and has several subsequent
books published by Jessica Kingsley Publishers, Future
Horizons Inc. and Guilford Press.
WORKSHOPS
WORKSHOPS
Conference Programme
9th and 10th January 2015 – City North Hotel, Dublin
Information on Conference Sessions and Seminars - Day One
Keynote One
Professor Roy Richard Grinker
The effects of culture on the prevalence of autism.
with autism. The schools will each have 15 minutes to present
on an aspect of their practice with a further two minutes for
questions.
The cultural impact of autism and the impact of culture on
the prevalence of autism; perspectives on the history and
epidemiology of autism and how this impacts on our work as
practitioners.
Keynote Two
Seminar A ‒ Main Conference Room
Somerville Suite
This presentation will uncover the history of intervention in
the field of autism, before discussing the spectrum of ideology
underlying current debates in the field and will offer some
suggestions as to the way forward in educational interventions.
Damian Milton
Bridging the gap: navigating the ‘double empathy problem’ in
educational practice with pupils and students on the autism
spectrum.
This seminar explores the notion of the ‘double empathy
problem’, which situates problems of empathy between autistic
and non-autistic people as a transactional issue.
Seminar B ‒ Whitewood 2&3
Dr Peter Vermeulen
Autism as context blindness.
The concept of context blindness unifies the existing cognitive
models in autism (theory of mind/extreme male brain,
executive functioning, central coherence) and offers an unique
and practical understanding of autism, resulting in a more
autism friendly approach.
Seminar C ‒ Whitewood 1
Middletown Centre for Autism
Middletown Centre has been engaged in a transdisciplinary
model of intervention throughout Northern Ireland and Ireland
since 2009. This session will examine the key aspects of the
Centre’s work across Learning Support and Assessment and
Research and Development.
Middletown Best Practice Presentations
Delegates will have the opportunity to hear four schools, two
from Ireland and two from Northern Ireland discuss their
practice in enabling education for children and young people
Damian Milton
Intervening with what? A critical examination of educational
ideology and related practices for children on the autism spectrum
Seminar D ‒ Main Conference Room
Somerville Suite
Professor Roy Richard Grinker
The Effects of Culture on the Prevalence of Autism
An extension of Professor Grinker’s keynote session which
examined the impact of culture on autism and prevalence and
reflections of Professor Grinker as a parent and Anthropologist.
Seminar E ‒ Whitewood 2&3
Dr. Peter Vermeulen
Autism as Context Blindness
The concept of context blindness unifies the existing cognitive
models in autism (theory of mind/extreme male brain,
executive functioning, central coherence) and offers an unique
and practical understanding of autism, resulting in a more
autism friendly approach.
Seminar F ‒ Whitewood 1
Middletown Centre
Middletown Centre has been engaged in a transdisciplinary
model of intervention throughout Northern Ireland and Ireland
since 2009. This session will examine the key aspects of the
Centre’s work across Learning Support and Assessment and
Research and Development.
This session will examine some key strategies used to promote
self awareness and self management in older children with
autism.
Conference Programme
9th and 10th January 2015 – City North Hotel, Dublin
Information on Conference Sessions and Seminars - Day Two
Keynote One
Keynote Three
Professor Tony Attwood
Managing Feelings: Cognitive behaviour therapy to manage
anxiety, sadness and anger.
Dr Peter Vermeulen
Autism and happiness: mission (im)possible?
The presentation explains why children and adults autism
syndrome are more prone to develop mood disorders and also
explains strategies that can help such individuals learn about
and manage emotions.
Keynote Two
Dr Patricia Daly
Promoting self management and self regulation in young people
with autism.
This session will examine some key strategies used to promote
self awareness and self management in children with autism.
Based on the principles of positive psychology, we argue for this
change in focus and we suggest that instead of concentrating
on the lack of emotional well-being in people with autism, we
should develop strategies to facilitate their feeling of happiness.
This keynote gives an outline of four different strategies that
aim at increasing quality of life and emotional wellbeing in
people with ASD.
Keynote Four
Professor Tony Attwood
Managing challenging behaviour in children with autism.
The presentation focuses on children and adolescents with
classic autism and provides an explanation and strategies with
regard to repetitive behaviour, emotion management and the
development of effective communication systems for emotions.
The application of Cognitive Behaviour Therapy to children
with severe autism is discussed and how it can be applied to
such individuals. The presentation will include strategies to help
with self-injurious behaviour and the improvement of social
understanding and coping with change.
PRESENTATIONS
PRESENTATIONS
Conference
Conference
Presentations
Programme
9th and 10th January KEYNOTE
2015 – City North Hotel, Dublin
Professor Roy Richard Grinker
The Effect of Culture on the Prevalence of
Autism
28/11/14 Autism Advocacy Societies, Private and Public
Worldwide (in blue)
R. R. Grinker
Professor and Chair of Anthropology
The George Washington University
Washington, D.C.
U.S.A.
[email protected]
What is culture?
What it is:
Public patterns of meaning (some
degree of consensus)
Relationship between illness and a
social system (e.g., causality, the roles and
expectations of children)
Salish Indians
Silicon Valley
Culture
Disintegration and the “Splitting of the Mind”
•  What it is not:
•  German Romanticism and Romantic literature
It is not homogeneous (M.J. Good
“hyperdiversity” in Boston).
It is not just the barrier to overcome
It is not always the most important
factor
Faust:
“In me there are two souls, alas, and their
Division tears my life two.”
"Zwei Seelen wohnen, Ach! in meiner Brust, Die eine
will sich von der anderen trennen.”
1 Conference Presentations
KEYNOTE
Professor Roy Richard Grinker
28/11/14 2014 Advertisement
The Impact of Culture
A group of British and American Psychiatrists
were shown a video of a socially awkward man,
described as a 30 year old bachelor and asked
to give a diagnosis based ONLY on the video
69% of American Psychiatrists----Schizophrenia
2% of British Psychiatrists----------Schizophrenia
DSM I-5
DSM I
•  000-x28 Schizophrenic reaction, childhood type
•  …Psychotic reactions in children, manifesting
primarily autism, will be classified here.
DSM II (1968) [autism was not mentioned; the word
appears only under the following category]
•  295.8 Schizophrenia, childhood type
•  … The condition may be manifested by autistic,
atypical and withdrawn behavior; failure to develop
identity separate from the mother's… mental
retardation, which should also be diagnosed.
New frameworks are not necessarily advances
over older ones
•  Diagnoses and Disabilities are continually framed and
reframed in different historical periods.
•  In Silicon Valley, the disabling properties of autism are
reconfigured in more positive terms
SES and Geography
•  In the U.S. white children receive an
autism diagnosis approx. 18 months
earlier than African-American children
(Mandell et al. 2002).
•  Rural children received a diagnosis 5 months later than urban
children
2 Conference Presentations
KEYNOTE
Professor Roy Richard Grinker
Importance of A Meaningful
Diagnostic Term
•  Clinicians will not make or record a diagnosis
unless the diagnostic term is meaningful and
in use
•  Navajo Indians tend to classify autism as “perpetual
childhood” (Conners and Donnellan, 1995)
•  In India, clinicians call autism paagol, the Hindi word
for “madness.” (Daley, 2003)
•  In rural South Korea, the term “brain disorder” is
used for children with traumatic brain injury, autism,
epilepsy, speech and language disorders, Down
syndrome, and other genetic disorders.
Examples of Cultural Differences that
might influence translation and adaptation
•  How do people negotiate between multiple health care
systems?
•  The concept of the “idiopathic” and the lack of a cure
(explanatory models, including biomedicine, are deeply
embedded in local systems of morality, related to stigma)
•  To what degree is the child distinct from its family or larger
social context?
•  Symptoms: what is a “pattern?”
•  What level of impairment warrants action?
•  What are the developmental milestones in a society?
CDC 2008 (continued)
•  New Jersey: 2.1% (boys: 3.4%)
•  Alabama: 0.4 (boys: 0.8%)
28/11/14 Challenges in International Epidemiology
•  Need for open access or low-cost tools
•  http://www.disabilitymeasures.org
•  More than 60% of the world’s population reside in low
income countries
•  67 different screening tools in the literature; few
translations or descriptions of adaptations
•  Cost of one ADOS kit: $1,995.00 plus shipping
Prevalence of Autism Among Children
born in 1989, Minnesota
• Prevalence increased with age
• In the same cohort, prevalence rose
every year up until age 15
•  13 in 10,000 at age 6
•  21 in 10,000 at age 9
•  33 in 10,000 at age 11
Prevalence and access to services
Population
Population
Services
Services
•  Utah: 2.1% (girls: 1.2%)
•  New Jersey: 2.1% (girls 0.6%)
Same prevalence
Low access to services
High access to services
3 Conference Presentations
KEYNOTE
Professor Roy Richard Grinker
South Korea
Resistance to the Diagnosis
•  The prevalence of ASDs was estimated to be 2.64% (95%
•  2/3 of the children identified with autism had never been
CI=1.91–3.37);
•  1.89% (95% CI=1.43–2.36) in the general-population
sample;
•  0.75% (95% CI=0.58–0.93) in the high-probability group.
•  “Prevalence of ASD in a Total Population Sample.” 2011. American Journal of
Psychiatry. Young Shin Kim, M.D., Ph.D.; Bennett L. Leventhal, M.D.; Yun-Joo Koh, Ph.D.;
Eric Fombonne, M.D.; Eugene Laska, Ph.D.; Eun-Chung Lim, M.A.; Keun-Ah Cheon, M.D.,
Ph.D.; Soo-Jeong Kim, M.D.; Young-Key Kim, M.D.; HyunKyung Lee, M.A.; Dong-Ho Song,
M.D.; Roy Richard Grinker, Ph.D.
28/11/14 diagnosed, and had never received any clinical or
educational services related to the symptoms of autism
•  Parents argued that:
•  Psychiatric care is stigmatizing
•  Autism is not a pervasive developmental disorder
•  Classified educable, verbal children as “Border Children” or said
their children had a “tendency” towards autism
•  South Korea lacking the concept of “diversity” and “difference” that
has energized self-advocates in the U.S.
•  Highly routinized classroom allows children with milder functional
impairments to “get by”
4 Conference Presentations
SEMINAR A - Somerville Suite
Damian Milton
28/11/14 ! Socrates:
Damian E M Milton MA, PGCert, BA (Hons), Dip(conv), PGCE, Mifl,
MBPsS
Doctoral Researcher – Autism Centre for Education and Research,
University of Birmingham.
Research Assistant – London South Bank University.
! A critique
...Can you point out any
compelling rhetorical reason why he
should have put his arguments together in
the order that he has?
! Phaedrus: You do me too much honour if
you suppose that I am capable of divining
his motives so exactly. (Plato, 1973: 78).
of the dominance of cognitive and
psychological explanations of autism in informing
educational practice (and service provision more
generally).
! Exploring issues of relationality and interaction
(Garfinkel, 1967).
! An explanation of the term the ‘double empathy
problem’ (Milton 2012), and how such a rendition
produces a critique of autism being defined as a
deficit in ‘theory of mind’ and social interaction, reframing such issues as a question of reciprocity and
mutuality.
! Examining how such a model can inform educational
practice.
! The triad of dominant theories.
! Positioning of autism as a neurological
! ‘Reading’
! “95%
the subtext of a social situation is
always actively constructed by people in
interaction.
! ‘Theory of mind’ refers to the ability an individual
has to assume understandings of the mental
states and motives of other people. When such
‘empathy’ is applied toward an autistic person
however, it is often wildly inaccurate in its
measure.
! Such attempts are often felt as invasive, imposing
and threatening by an autistic person, especially
when protestations to the contrary are ignored by
the person doing the ‘empathising’.
disorder, a pathological deviance from
expected functional stages of
development.
! This approach when applied to the
education of those diagnosed often
becomes a ‘treatment program’ of
modifying the ‘autistic person’ as ‘best one
can’ to fit in with the mainstream culture of
society.
of people don’t understand me”.
! “Friends
are overwhelming”.
! “Adults
never leave me alone”.
! “Adults
don’t stop bullying me”.
1 Conference Presentations
SEMINAR A - Somerville Suite
Damian Milton
! The
! The
! To
! Internalised
‘double empathy problem’: A
disjuncture in reciprocity between two
differently disposed social actors which
becomes more marked the wider the
disjuncture in dispositional perceptions of
the lifeworld - perceived as a breach in the
'natural attitude' of what constitutes 'social
reality' for ‘non-autistic people’ and yet an
everyday and often traumatic experience
for ‘autistic people’.
be defined as abnormal in society, is
often conflated with being perceived as
'pathological' in some way and to be
socially stigmatised, shunned, and
sanctioned.
! The denigration of difference,
discrimination, stigma and bullying (Tajfel
and Turner, 1979).
28/11/14 ‘double empathy problem’ refers to a breach
in the ‘natural attitude’ (Garfinkel, 1967) that
occurs between people of different dispositional
outlooks and personal conceptual understandings
when attempts are made to communicate
meaning.
! In a sense it is a 'double problem' as both people
experience it, and so it is not a singular problem
located in any one person.
! The ‘empathy’ problem being a ‘two-way street’
has been mentioned by both autistic writers
(Sinclair, 1993) and non-autistic writers alike
(Hacking, 2009).
oppression and the selffulfilling prophecy (Becker, 1963), leading
to a self-imposed psycho-emotional
disablement (Reeve, 2011, Milton and
Moon, 2012).
! 
! 
! 
! 
! 
! 
! 
! 
! 
! 
Becker, H. (1963) Outsiders. New York: The Free Press.
Garfinkel, H. (1967) Studies in Ethnomethodology. New Jersey: Prentice
Hall.
Hacking, I. (2009) “Autistic autobiography”, in Philosophical Transactions of
the Royal Society: Biological Sciences, Vol. 364(1522): 1467-1473.
Milton, D. (2012) On the Ontological Status of Autism: the ‘Double Empathy
Problem’. Disability and Society. Vol. 27(6): 883-887.
Milton, D. and Moon, L. (2012) ‘“They judge me on the bit they can see...”:
how normative practices have led to the psycho-emotional disablement of
autistic people’, Critical Disability Discourse (in review).
Plato, trans. Hamilton, W. (1973) Phaedrus and Letters VII and VIII.
London: Penguin.
Reeve, D. (2011) ‘Ableism within disability studies: The myth of the reliable
and contained body.’ Theorising Normalcy and the Mundane, 2nd
International Conference. Manchester Metropolitan University.
Said, E. (1978) Orientalism. London: Vintage Press.
Sinclair, J. (1993) “Don’t Mourn For Us”, http://www.autreat.com/
dont_mourn.html, - accessed 10/11/09.
Tajfel, H. and Turner, J. (1979) An integrative theory of intergroup conflict.
In D. Langbridge and S. Taylor (ed’s) Critical Readings in Social
Psychology. Milton Keynes: Open University.
2 Conference Presentations
SEMINAR B & E - Whitewood 2&3
Dr. Peter Vermeulen
Autism as context blindness Peter Vermeulen, PhD ‐ Autisme Centraal – Gent, Belgium Gormanstown, Ireland ‐ Middletown Centre for Autism – Jan 9th 2015 A little remark on terminology: In the presentation the term Autism is used as synonym for “Autistic Spectrum Disorder”. Key take‐away message: The biggest problem for people with autism: there are no absolute meanings in our world. The meaning of many stimuli is context dependent. People with autism are context blind: they give meaning in an absolute rather than a contextually sensitive way. We should clarify the context of stimuli so that people SEMINAR B & E - Peter Vermeulen
with autism can find their way “blindly” in a word full of relative meanings. This clarification is the core of autism friendliness. Autism friendly approach: ƒ An autism friendly approach starts from an understanding of autism from within! ƒ Knowledge of “autistic thinking” is the key to success in education and treatment! The iceberg of behaviour Cognitive theories on autism: • Theory of Mind: The ability to recognize and infer mental states / Understanding thoughts and emotions • Executive functions: Problem solving abilities, Planning, Impulse control, Attention, …… • Central coherence: The ability to see the big picture and not losing yourself in details These 3 cognitive theories on autism ƒ Helped us to understand autism ‘from within’ ƒ Gave us ideas for education and treatment, e.g. – Social cognition training (ToM) – Cognitive Behavioural Therapy – Social Thinking (ToM & EF) – Use of organizers (EF) © Peter Vermeulen ‐ www.autisme.be Page 1 Conference Presentations
SEMINAR B & E - Whitewood 2&3
Dr. Peter Vermeulen
Current theories (ToM, EF, CC) Very good theories, very helpful… But… Unexpectedly, in recent studies (more able) people with ASD perform quite well on tests of ToM, EF and CC… despite difficulties in real life Theory of Mind: ƒ More able people with ASD succeed rather well in (even advanced) ToM‐tests… ƒ But they perform less well in more ‘naturalistic’, real life tasks where CONTEXT plays a role Executive functions: ƒ Good performance on tests for cognitive flexibility (e.g. WCST) despite problems in real life (Geurts e.a., 2009) ƒ When given clear instructions, no problems with “set shifting” (Poljac e.a., 2009; 2010) Central coherence: ƒ Not always problems with / preference for global perception (Happé & Booth, 2008) ƒ Not always superior in details! Contextually relevant vs incidental details Tests vs real life Tests Real life ƒ
ƒ
Structured Chaotic Artificial materials Real people and things Cued reaction Spontaneous A‐contextual materials Context People with ASD perform rather well on isolated, decontextualized tasks in tests Problems arise when context is involved: in contextualized materials or real life Context: ƒ Common pathway in cognitive theories ƒ Context plays a role in those cognitive processes that are affected in ASD • Face perception • Emotion recognition • Social problem solving • Speech perception and recognition • Understanding language • Flexibility in behaviour • Concept formation • … © Peter Vermeulen ‐ www.autisme.be Page 2 Conference Presentations
SEMINAR
2&3
SEMINARBB&&EE- -Whitewood
Peter Vermeulen
Dr. Peter Vermeulen
Hypothesis (Vermeulen, 2007) What is context? Everything in a certain situation (in the surroundings, on the background…) that reveals and influences the meaning of something (an object, a behaviour, a word …). External and internal context: External context: • The context we can perceive: • The effects of other stimuli on a ‘target stimulus’ Internal context ƒ The context ‘in your head’: • The effects of your knowledge, expectations and long term memory on what you perceive Role of contextual sensitivity in human information processing • Helps us to quickly find the right meaning of stimuli: context is our guide in perception! Especially when the input is vague, incomplete or ambiguous! But what if you miss the context? Context blindness: © Peter Vermeulen ‐ www.autisme.be Page 3 Conference
Conference
Presentations
Programme
SEMINAR B & E - Whitewood 2&3
Dr. Peter Vermeulen
Context blindness Autism is a form of blindness: Context blindness ƒ Reduced ability to use the context spontaneously when giving meaning to (especially vague, ambiguous and abstract) stimuli. ƒ Seeing context but not using it Autistic meanings People with autism give meaning too But their meanings are often • Fixed 1‐1 stimulus‐meaning connections • Stimulus driven rather than context driven Context blindness and autism Context and social interaction Context plays a crucial role in: • Understanding emotional expressions: o We never see facial expressions out of context o Relation expression –emotion is not fixed o In emotion recognition, the context is sometimes more important than the face o Context influences emotion recognition (Da Fonseca e.a. 2008) • Social and emotional skills: o They can learn a lot of scripts and skills… o They often know a lot of (prototypical) scripts (Loveland a.o., 2001; Volden & Johnston, 1999; 2001) o But have difficulties with contextually appropriate application of scripts o Socially appropriate behaviour = contextually appropriate behaviour Context and social competence The biggest problem in ASD is not social skills (knowing what and how to do) The biggest problem in ASD is knowing where and when to do it and where and when not Social competence requires contextual sensitivity © Peter Vermeulen ‐ www.autisme.be Page 4 Conference
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Programme
th
SEMINAR
&
2&3 Dublin
9th andSEMINAR
10
January
BB
&2015
E -EPeter
–- Whitewood
CityVermeulen
North Hotel,
Dr. Peter Vermeulen
Context and communication Context and understanding language • The meaning of any communication symbol… – Words – Sentences – Gestures – Pictures and other forms of visual communication – Even objects • …is never fixed, but varies depending on the context! • Language is full of ambiguity: o Words with different meanings (polysemy): bank, crane, bat, … o Words with vague meanings o Referential words: later, you, big… Literal understanding: ƒ Literal understanding = a‐contextual understanding ƒ Literal understanding – Not only of words and sentences – Also of visual communication – Also of situations A‐contextual understanding • People with autism have difficulties understanding what something means “in this context”: Context and restricted, repetitive behaviours • Lack of flexibility in giving meaning Æ strict and rigid reactions • Fixed 1‐1‐associations Æ Problems with generalization o Both over generalizing and under generalizing • Resistance against changes Context blindness: consequences for education and treatment: ƒ
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We cannot teach a blind person to see The same applies to a context blind person Contextual sensitivity works – In stealth modus (unconscious) – Very fast (within milliseconds) But there’s a lot that we can do to help! – Clarifying the world – Teaching compensation strategies – Contextualized skills training Autism friendliness = pushing the context button = clarifying the world Context blindness Ð Not seeing the “right” meaning Ð Offering the “right” meaning Ð Clarifying context and the world © Peter Vermeulen ‐ www.autisme.be Page 5 Conference
Conference
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SEMINAR B & E - Whitewood 2&3
Dr. Peter Vermeulen
More information: Peter Vermeulen, PhD Autisme Centraal Groot Begijnhof 85 B‐9040 Gent – Belgium www.autisme.be [email protected] Peter_Autisme Autism as context blindness AAPC Publishing, 2012 ISBN: 9781937473006 I am special – second edition A Workbook to Help Children, Teens and Adults with Autism Spectrum Disorders to Understand Their Diagnosis, Gain Confidence and Thrive Jessica Kingsley Publishers, 2013 © Peter Vermeulen ‐ www.autisme.be Page 6 Conference Presentations
SEMINAR C & F - Whitewood 1
Middletown Centre for Autism Research
Middletown Centre’s Trans-Disciplinary Working Across Northern
Ireland and the Republic of Ireland.
Lorraine Scott Head of Learning Support and Assessment at the Centre provides an overview of the Centre’s intervention approach.
Trans Disciplinary Approach
The transdisciplinary approach to intervention has been
described as:
‘...the sharing of roles across disciplinary boundaries so that
communication, interaction and cooperation are maximized
among team members’ (King et al., 2009, p.211).
Middletown Centre’s Trans Disciplinary Approach
The Centre’s Learning Support and Assessment Service (LS&A)
is comprised of:
• Teachers
• Occupational therapy (OTs)
• Educational psychology (EP)
• Speech and language therapy (SLT)
• Autism Intervention Officers (AIO)
• Learning Support Officers (LSP)
The MCA transdisciplinary model involves a team of
professionals working collaboratively to deliver a holistic
intervention to the child and a programme of support to
the family, as well as to educational and health professionals
working in the child’s school. In the transdisciplinary model,
skills can be transferred amongst all members of the team,
extending their traditional roles. The model allows support to
be provided to any member of the team undertaking the role
of intervention coordinator. An example of this would be a
specialist teacher undertaking the promotion of communication
skills with the support of the team’s SLT. The model is fluid
and is built on a culture of on-going observation of the child
and capacity-building support to the family and the entire
school staff. Professional roles are understood and respected;
however, staff members working in the transdisciplinary
model are encouraged to extend their practice outside of their
traditional roles. This is supported by regular team meetings
and comprehensive continuous professional development
(CPD) programming. Amongst the benefits to the child or
young person, school and family is that one professional is the
main point of contact.
The Learning Support and Assessment Service
}
The service provides:
• A comprehensive assessment
and learning support plan (LSP)
•Training
• Home support with parental and/or
caregiver advice and training
• Support is provided for up to three
academic terms.
Trans-Disciplinary
Delivery
This session provides an overview of MCA’s approach to
learning support and intervention.
Conference Programme
NOTES
Conference Presentations
SEMINAR D - Somerville Suite
Professor Roy Richard Grinker
The Effect of Culture on the Prevalence of
Autism
What is culture?
What it is:
Public patterns of meaning (some degree of
consensus)
•  What it is not:
R. R. Grinker
Professor and Chair of Anthropology
The George Washington University
Washington, D.C.
U.S.A.
[email protected]
Disintegration and the “Splitting of the Mind”
It is not homogeneous (M.J. Good
“hyperdiversity” in Boston).
It is not just the barrier to overcome
It is not always the most important
factor
Autism is Not Exceptional
•  German Romanticism and Romantic literature
•  Many other disorders and disabilities have a similar
Faust:
“In me there are two souls, alas, and their
Division tears my life two.”
history
•  Schizophrenia (literally, skhizein, "to split,” and phrēn,
"mind")
"Zwei Seelen wohnen, Ach! in meiner Brust, Die eine
will sich von der anderen trennen.”
2014 Advertisement
New frameworks are not necessarily advances
over older ones
•  Diagnoses and Disabilities are continually framed and
reframed in different historical periods.
•  In Silicon Valley, the disabling properties of autism are
reconfigured in more positive terms
28/11/14 Conference Presentations
SEMINAR D - Somerville Suite
Professor Roy Richard Grinker
Autism Diagnosis and Culture
Cultural Translation and Adaptation
•  The goal of translation is not term equivalence but rather the effective
•  Don’t assume that major adaptations to an instrument are necessary.
•  Appreciate that “autism” is a social construct
•  The presumption of an empirical pathology can mask the fact
that disorders are also “social and linguistic products cofabricated within the complex construction and contestation of
cultural codes, norms, and identities” (Danforth and Navarro
2001: 167)
Challenges in Communication
communication of a set of ideas that speak to a system of beliefs.
Indeed, a cultural translation may be a better and more effective
document than the original, especially if it is targeted towards a
particular community, the members of which view the document as
written by and for them
•  Adaptation is the process of framing larger structures of meaning
(concepts, ideas, problems) for a distinct population
Examples of Cultural Differences that
might influence translation and adaptation
•  Linguistic competence (in which organizations or
individuals are able to communicate effectively with
people who have different native languages -- but in multilanguage settings, what language does one use?)
•  How do people negotiate between multiple health care
systems?
•  The concept of the “idiopathic” and the lack of a cure
•  Cultural suitability (in which information is shaped and
presented for a specific audience whose linguistic and
social contexts, and systems of belief, may differ
significantly from those of the authors)
More Examples
•  What are the developmental milestones?
•  How and when do children communicate (process
and speed of language acquisition varies across
cultures)?
•  What constitutes “play?”
•  What is a “friendship?”
•  What counts as “unusual” behavior?
•  Idea of impairments in multiple contexts
•  Fewer opportunities for variations in routine
(explanatory models, including biomedicine, are deeply
embedded in local systems of morality, related to stigma)
•  To what degree is the child distinct from its family or larger
social context?
•  Symptoms: what is a “pattern?”
•  What level of impairment warrants action?
Western Psychological Services
•  Need for open access or low-cost tools
•  http://www.disabilitymeasures.org
•  More than 60% of the world’s population reside in low
income countries
•  67 different screening tools in the literature; few
translations or descriptions of adaptations
•  Cost of one ADOS kit: $1,995.00 plus shipping
28/11/14 Conference Presentations
SEMINAR D - Somerville Suite
Professor Roy Richard Grinker
Research Methods for Adaptation and
Translation
South Korea
•  The prevalence of ASDs was estimated to be 2.64% (95%
CI=1.91–3.37);
•  Focus Groups
•  Ethnography (Participant-Observation)
•  1.89% (95% CI=1.43–2.36) in the general-population
sample;
•  Cultural Consensus Analysis (Autism Speaks First 100
Days Kit)
•  Model adaptations on other tools for other conditions
(don’t ‘reinvent the wheel’)
•  0.75% (95% CI=0.58–0.93) in the high-probability group.
•  “Prevalence of ASD in a Total Population Sample.” 2011. American Journal of
Psychiatry. Young Shin Kim, M.D., Ph.D.; Bennett L. Leventhal, M.D.; Yun-Joo Koh, Ph.D.;
Eric Fombonne, M.D.; Eugene Laska, Ph.D.; Eun-Chung Lim, M.A.; Keun-Ah Cheon, M.D.,
Ph.D.; Soo-Jeong Kim, M.D.; Young-Key Kim, M.D.; HyunKyung Lee, M.A.; Dong-Ho Song,
M.D.; Roy Richard Grinker, Ph.D.
Resistance to the Diagnosis
Parents in Seoul, South Korea
•  2/3 of the children identified with autism had never been
•  Hye-yeon: The doctor told me my son has a tendency to
diagnosed, and had never received any clinical or
educational services related to the symptoms of autism
•  Parents argued that:
•  Psychiatric care is stigmatizing
•  Autism is not a pervasive developmental disorder
•  Classified educable, verbal children as “Border Children” or said
their children had a “tendency” towards autism
•  South Korea lacking the concept of “diversity” and “difference” that
has energized self-advocates in the U.S.
•  Highly routinized classroom allows children with milder functional
impairments to “get by”
Parents (cont.)
autism.
• 
•  Eun-kyung: The difference [between having autism and
not having autism] is just a few questions on a test.
• 
•  Mi-ok: So the test doesn’t tell you anything.
Parents (cont)
•  Eun-kyung: But the mom should know [i.e. be told] if there
is tendency to autism.
• 
•  Hee-jong: My second son is 4 and he was diagnosed with
a tendency to autism. So I went to another doctor and he
said my child had a social disorder. He [my husband]
yelled at me. My husband and I had a big fight about it. I
was just relieved that he didn’t have autism.
• 
•  Sang-joo (Hee-jong’s husband): Our son is hardly different
from other children.
Eun-ju: The biggest concern for me when [my child]
entered elementary school, was, “Will he blend in with his
peers? (mudhyo-gal-su isseulka?).” I dreaded that he
would stand out. That the kids and the teacher would
discover something odd about him.
28/11/14 Conference Presentations
SEMINAR D - Somerville Suite
Professor Roy Richard Grinker
Autism Speaks Foundation First 100
Days Kit
Some Final Questions
•  Rationale: delayed diagnosis compared to white
•  What is the purpose of thinking about a group of
•  Prefer to seek guidance at church
•  How does race and ethnicity in my country influence the
population
•  Belief that medication removes or lessens the severity of
a symptom, making it difficult to treat the disease
•  Mother blame
•  Stigma, marginalization
individuals as members of an ethnic or racial group?
way I conduct my research or provide services?
•  How am I making decisions about how to categorize the
population I’m studying or helping?
28/11/14 Conference Presentations
KEYNOTE
Damian Milton
28/11/14 ! “I
Damian E M Milton MA, PGCert, BA (Hons), Dip(conv), PGCE, Mifl, MBPsS
Doctoral Researcher – Autism Centre for Education and Research, University of
Birmingham.
Research Assistant – London South Bank University.
had virtually no socially-shared nor
consciously, intentionally expressed,
personhood beyond this performance of a
non-autistic ‘normality’ with which I had
neither comprehension, connection, nor
identification. This disconnected constructed
facade was accepted by the world around
me when my true and connected self was
not. Each spoonful of its acceptance was a
shovel full of dirt on the coffin in which my
real self was being buried alive...” (Williams,
1996: 243).
! I’m
autistic (diagnosed 2009) – as
is my son (diagnosed 2005).
! A background in Social Science
(initially Sociology).
! Studying for a PhD in the education
of people on the autism spectrum.
! On the programme board of the
AET.
! On the scientific committee for
Research Autism.
! Researcher at London South Bank
University.
! Exploring
! A plethora
! Early Intensive Behavioural Intervention (EIBI).
! Discrete Trial Training (DTT).
! Functional assessment (ABC method) – the
of interventions generally based
upon the principles of Applied Behavioural
Analysis (ABA).
! Operant conditioning.
! Intensive therapy of 40 hours of work a
week, over a number of years.
! Early aversive punishments
! Lovaas (1987) and their goal of making
autistic children “indistinguisable from their
peers”
! Now largely and rightly frowned upon...or is
it...?
educational goals and priorities for
people on the autism spectrum.
! Research Autism website lists of 1,000 named
interventions.
! What is the goal of these interventions?
! Are there ethical issues regarding these purposes,
or the means by which one tries to achieve them?
! An overview of the spectrum of ideology regarding
educational approaches for autistic children –
using examples (ABA, RDI, Intensive Interaction).
! Tensions between views and why they exist.
! My own positionality...
teacher describes a ‘problem behaviour’, identifies
antecedents for why the behaviour is occurring,
and analyses the consequences of the behaviour.
This analysis is thought to indicate what
influences and sustains such behaviours.
! Pivotal Response Therapy (PRT) – ‘natural
reinforcers’.
! Positive Behaviour Support (PBS).
Conference Presentations
KEYNOTE
Damian Milton
28/11/14 ! Maurice
(1994) claims that ABA had
saved her children’s lives, likening it to
chemotherapy as a treatment for cancer.
! Often sold as if it is a ‘miracle treatment’,
and if not, as the only recognised
approach to be ‘scientifically proven’, and
needed as quickly as possible in order not
to miss the ‘window of opportunity’.
! Exploitation of vulnerable parents?
! “I
! Alternatives
to Behavioural approaches
are often categorised as Relationshipbased or Developmental approaches.
! This is a very broad category however
which encompasses a number of differing
approaches.
! TEACCH or Structured Teaching.
! This approach places emphasis on
! Gernsbacher
! There
(2003) – ‘scientifically
proven?’
! Michelle Dawson (2007) – a tale of two
ABA-studies.
! No significant differences (Magiati et al.
2007; Hogsbro, 2011; Fernandes and
Amato, 2013; Boyd et al. 2013).
! Studies show massive variance in terms
of the outcomes of interventions, whatever
the purpose they are set too.
was quite surprised that the point kept
being made about 'allowing' children to
demonstrate their behaviours yet no-one
really pointed out how these behaviours
stop people learning and engaging. And
the comment about 'adapting the world
rather than the child' (paraphrase) was so
shocking in its niaevity. Yeah, the world's
sooooooooooooo like that.”
the
structure and predictable sequencing of
activities, as well as visual schedules and
prompts.
! More recently the SCERTS (Social
Communication, Emotional Regulation
and Transactional Support) approach has
been formulated.
is certainly not enough evidence to
suggest a one-size-fits-all approach.
! Common factors between approaches?
! Beneficial factors within them?
! Influential factors such as maturation which
have little to do with what educational
approach one takes.
! For me, none can claim to have a scientific
evidence base of effectiveness. For me, this
has not been demonstrated, and unlikely
ever to be.
Conference Presentations
KEYNOTE
Damian Milton
! Radical change in society.
! Pupil-led vs. teacher-led activities.
! Social skills training and the appropriateness
in neurological development as
part of natural diversity, rather than
something to be pathologised using a purely
medical model of disability, defined by one’s
deviation from statistical or idealised norms
of embodiment or observed behaviour.
! This is not to say that those who identify as
autistic people or other forms of neuroidentity do not find life challenging. Autistic
people are significantly disadvantaged in
many aspects of life.
! Understanding
of differing dispositions, a
building of relationships in a respectful
manner, engaging with an individual’s
abilities and interests and not just what
they find difficult.
! Is this not how many people, whatever
their disposition would like to be treated
within educational settings?
! What
! Thus,
! The
! Initial findings from PhD research.
! Significant tensions over a number of issues:
! Celebrating the diversity of learners and not trying
to ‘normalise’ them.
of
behaviour.
! Positionality and the ‘triple’ empathy problem!
! Common ground? Accepting diversity? Building
relationships, communication and mutual
understanding.
the common sense answer is: it
depends on the child, what you are trying to
teach and why, and the environment one is
in.
! One thing that does not work though,
speaking as an autistic person, is trying to
‘cure’ someone of being autistic.
! How about asking autistic people?
! The Autism Education Trust (AET) materials.
! The NAS ‘Ask autism’ e-learning modules.
! An ongoing process...
! Variations
is a parent or practitioner working
with autistic children to do?
! The answer to this befuddling question is
never an easy one.
! Due to the diversity of dispositions and
learning styles of people on the autism
spectrum, asking “what works?” in an
educational setting, is like asking the
same question about people who are not
autistic.
National Autistic Society (NAS)
promote what they call a framework,
rather than an approach, known as
SPELL (Structure, Positive, Empathy,
Low-arousal, Links).
! The nuances of structure.
! The ‘double empathy problem’ (Milton,
2012).
! Low-arousal does not mean no-arousal.
! Don’t Panic!
28/11/14 Conference Presentations
KEYNOTE
Damian Milton
! 
! 
! 
! 
! 
! 
! 
! 
! 
Autism: Challenging Behaviour (2013), Two Step Films.
Baron-Cohen (2014) Radical Behaviourism. Accessed 11/02/14:
http://www.edge.org/response-detail/25473
Boyd, B., Hume, K., McBee, M., Alessandri, M., Gutierrez, A., Johnson, L., Sperry, L. and
Odom, S. (2014) ‘Comparative Efficacy of LEAP, TEACCH and Non-Model-Specific
Special Education Programs for Preschoolers with Autism Spectrum Disorders’. Journal of
Autism and Developmental Disorders, Vol. 44: 366-380.
Caldwell, P. (2014), Accessed 11/02/14: http://www.phoebecaldwell.co.uk/
Dawson, M. (2007) A Tale of Two ABA Studies. Accessed 11/02/14:
http://autismcrisis.blogspot.co.uk/2007/06/tale-of-two-aba-studies.html
Fernandes and Amato (2013) Applied Behaviour Analysis and Autism Spectrum Disorders:
Literature Review. CoDAS, Vol. 25(3). Accessed 11/02/14:
http://www.scielo.br/scielo.php?
script=sci_arttext&pid=S2317-17822013000300016&lng=en&nrm=iso&tlng=en
Gernsbacher, M. (2003) Is One Style of Early Behavioural Treatment for Autism
‘Scientifically Proven’? University of Wisconsin-Madison.
Greenspan, S. (2014), Accessed 11/02/14: http://www.stanleygreenspan.com/
Hogsbro (2011) Ethical consideration following an evaluation of preshool programs for
children with autism spectrum disorders. Accessed 11/02/14:
http://www.soc.aau.dk/fileadmin/user_upload/kbm/VoF/Kurser/2011/evidence/Kjeld-HEthical-consideration-following-an-evaluation-of-preshool.pdf
! 
! 
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! 
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28/11/14 Lovaas, O. (1987) ‘Behavioural treatment and normal educational and intellectual functioning in young
autistic children’, Journal of Consulting and Clinical Psychology, Vol. 55: 3-9.
Loud Hands Project (2014), Accessed 11/02/14: http://loudhandsproject.org/
Magiati, I., Charman, T. and Howlin, P. (2007) ‘A two-year prospective follow-up study of communitybased early intensive behavioural intervention and specialist nursery provision for children with autism
spectrum disorders’, Journal of Child Psychology and Psychiatry. Vol. 48 (8): 803-812.
Mason, M. (2000) Incurably Human. Nottingham: Inclusive Solutions.
Maurice, C. (1994) Let Me Hear Your Voice: A Family’s Triumph over Autism. London: Ballantine Books.
Merriam, S. and Caffarella, R. (1991) Learning in adulthood. Oxford: Jossey-Bass Publishers.
Mills, R. (2013) Guidance for Considering a Treatment Approach in Autism. Accessed 11/02/14:
http://www.autism.org.uk/living-with-autism/strategies-and-approaches/before-choosing-an-approach/
guidance-for-considering-a-treatment-approach-in-autism.aspx
Milton, D. (1999) The Rise of Psychopharmacology [Masters Essay – unpublished]. University of
London.
Milton, D. (2012) On the Ontological Status of Autism: the ‘Double Empathy Problem’. Disability and
Society. Vol. 27(6): 883-887.
Pirsig, R. (1991) Lila: An Inquiry into Morals. London: Alma Books.
Research Autism (2014), Accessed 11/02/14: http://researchautism.net/pages/welcome/home.ikml
Williams, D. (1996) Autism: An Inside-Out Approach. London: Jessica Kingsley.
Zurcher, A. (2012) Tackling that troublesome issue of ABA and ethics. Accessed 11/02/14:
http://emmashopebook.com/2012/10/10/tackling-that-troublesome-issue-of-aba-and-ethics/
Conference
Conference
Presentations
Programme
KEYNOTE
Professor Tony Attwood
Understanding, Expressing and Managing Feelings
Presenta6on for “Enabling Educa6on” Conference Middletown Centre for Au6sm January 20145 Reasons for Difficul6es in Expressing and Managing Emo6ons Theory of Mind •  Ability to read and interpret the cues and context that indicate someone’s feelings, thoughts, inten6ons and beliefs (Alien) •  Ability to self-­‐reflect, to perceive and think about one’s own thoughts and to monitor, communicate and manage one’s own emo6ons (inner turmoil) Professor Tony A1wood Neuro-­‐imaging and Theory of Mind Alexithymia
•  A diminished vocabulary to describe the different levels of emo6onal experience •  Especially subtle and complex emo6ons •  “I need a language for my worries” An 8 year old boy with ASD •  “How were you feeling” Problems Expressing and Enjoying PosiAve EmoAons
•  Difficulty resona6ng with the happiness of others •  Needing to learn how to express affec6on •  Knowing how to relax Facial Expressions •  “I don’t know” •  ‘I don’t know how to mentally grasp the intangible nega6ve emo6ons swirling in •  Facial expression may not reflect the inner mood. my mind, iden6fy and label them accurately and communicate those feelings in “People tell me to smile even though I feel great inside” . speech so that you will understand’ •  ‘Smile for the camera’ •  Eloquent expression using music, lyrics, poetry, typing an e-­‐mail, or art EmoAons and the Special Interest
Percep6on of Inner Signals •  Diagnos6c assessment of an adult My emo9onal range is quite extreme and somewhat rudimentary. However, when I engage in my special interest on my own, I can access a greater emo9onal realm and landscape that is wonderful and safe for me, in that context. Emo6onal Sensi6vity Overly sensi6ve to another person’s nega6ve mood Hyper-­‐sensi6ve to disappointment, anxiety or agita6on •  “How did you know…….? Measurement of Heart Rate •  Sports technology to measure heart rate •  Signs of increasing agita6on •  Signs of increasing relaxa6on Intensity of Expression •  Intensity of emo6ons from infancy •  An ‘on/off’ light switch of brilliant light rather than a gradually increasing dimmer switch 04/12/14 Conference Presentations
KEYNOTE
Professor Tony Attwood
Reasons for Challenges in Expressing and Managing EmoAons
04/12/14 Empathic AHunement
•  There’s a kind of instant subconscious reac9on to the emo9onal states of other people that I have understood beEer in myself over the years •  If someone approaches me for a conversa9on and they are full of worry, fear or anger, I find myself suddenly in the same state of emo9on •  I am able to dis9nguish very subtle cues that others would not see, or it might be a feeling I pick up from them •  A ‘sixth sense’ •  Avoidance of some social situa6ons due to being sensi6ve to ‘nega6ve vibes’ Gene$cs •  Family history of mood disorders Experience •  Aversive social, communica6on and sensory experiences •  Bullying and teasing •  Loneliness and failed friendships Abili$es (Au$sm levels 2 and 3) •  Communica6on •  Intellectual •  Movement CAT-­‐kit
3 Forms of Empathy
With the CAT kit I can connect with my feelings and see the feelings I feel. •  Cogni6ve: To know (read signals) (Ase) •  Emo6onal: To feel EmoAon EducaAon •  Compassionate: To respond (repair) •  A thermometer to measure the degree of intensity Emo6on Educa6on “I need a language for my worries” •  Place photographs and words at the appropriate point on the ‘thermometer •  Increase precision and accuracy in verbal expression Alexithymia www.catkit-­‐us.com Structure to organise emo6onal experiences www.jkp.com www.transporters.tv Apps Bronwyn Su1on www.learningappguide.com.au The Learning App Guide to Au6sm and Educa6on Reviews apps on emo6ons The Understanding and Expression of Emo6ons •  Happy-­‐ Sad. •  Relaxed-­‐Anxious. •  Affec6on-­‐Anger. •  Problems with emo6onal arousal for both nega6ve and posi6ve emo6ons Emo6onal Tides Mood diary Energy Accoun6ng Energy Bank: Withdrawals and Deposits •  Concept of an energy bank account Withdrawal Deposit •  Energy withdrawals and deposits Socializing Solitude •  To keep in the black and avoid Change Special interest Memories Physical ac6vity Making a mistake Animals and •  Healthy energy bank balance Sensory sensi6vity nature •  Physical and mental health ‘6de’ of anxiety Computer games Daily living skills Medita6on Managing emo6ons Caring for others Nega6ve thoughts Nutri6on going into the red Sleep Conference Presentations
KEYNOTE
Professor Tony Attwood
Daily Budget 100 units
Balancing the Books
•  Work (social overload) = 50 04/12/14 Emo6onal Toolbox: To Fix The Feeling •  Personal trainer •  Scheduled deposit 6me in a diary units •  Physical exercise, walk, run, within the day and over 6me •  Change in expecta6ons or trampoline. •  Knowing when to stop ‘spending’ rou6ne =25 units •  Sport (Basket Ball, golf, weight •  New sources of ‘income’ •  Making a mistake = 10 units liling) or dancing. •  Having enough reserve in the •  Sensory overload =15 units Physical Ac$vity Tools. Quick release of emo6onal energy •  “Running keeps anxiety away” account •  Crea6ve destruc6on (recycling) •  Economic or energy depression •  Emo6on repair by an act RelaxaAon Tools. Slow release of emoAonal energy
Awareness Tools • Relaxa6on training. •  3 minute exercise daily • Solitude. •  Pause in between ac6vi6es • Massage. •  No6ce breath • Sleep •  Yoga • Time in nature (walking, fishing, •  Mar6al arts camping) •  Medita6on • Being with animals (pets, horses, birds, even rep6les and insects) Thoughts and perspec6ve Social Tools
An6dote to Poisonous Thoughts •  P (poisonous thought) or A Social Tools: Affec6on •  Time with a family member or friend •  Disclosure (typing, music, poetry) •  Seek advice •  Approval •  Intensity •  Dura6on •  Validate feelings •  Being with a pet (an6dote). •  Put the events in perspec6ve. •  Imagine what you would like to do or say. •  Being calm is being smart (IQ) Evan •  I’m a loser ( ). •  I can stay calm ( ). •  Relaxing makes me think be1er ( ). “I fail to understand why the exer6on of •  Everyone hates me ( ). pressure on the human body should be •  Create an6dotes to the person’s considered comfor6ng." ‘poisonous thoughts’. Conference Presentations
KEYNOTE
Professor Tony Attwood
04/12/14 Medica6on As a Tool Sensory Tools Special Interests
•  A means of relaxa6on, pleasure. •  Knowledge to overcome fear. •  Keeps anxiety under control •  Thought blocking •  Energizer when exhausted or sad •  Collec6ng and cataloguing (personal defrag). •  Distrac6on during a meltdown. •  The ‘off switch’ •  Mo6va6on and conceptualiza6on ( Dr. •  Treatment of an anxiety disorder • Sounds. Ear plugs, headphones. • Light. Irlen Lenses, hat, sun glasses. • Aroma. deodorants, cleaning • Taking stress out on someone else. • Self-­‐injury to focus on another feeling •  Not changing the inner products. •  Other people becoming emo6onal and confronta6onal reac6on or expression 86% of over 300 adults who have Asperger’s syndrome reported having daily problems with anxiety •  Use of alcohol and illegal drugs. •  Anxiety is my constant companion •  Different tools at different •  Much of my life and strength have been used up on anxiety points on the thermometer. •  I can dream up endless things to get anxious about •  Relaxa6on tools at low stress levels, physical tools at high stress levels experience but reducing the Anxiety Been There. Done That. Try This! Inappropriate Tools
• Being alone too long. •  Seda6on (an6-­‐psycho6cs) • Tac$le. Clothing. Who) • Violence or a clinical depression (SSRI). •  Mood cycles (an6-­‐convulsants). •  Anxiety has controlled my life in so many ways Charlo1e Poe Anxiety is the black cloud over your head that fills your head like a storm and doesn’t leave room for you to think or breathe Triggers for Anxiety
Sensory SensiAvity •  Change •  Hyper-­‐vigilant •  Disrup6on of rou6ne •  Exhaus6ng •  Social situa6ons •  Life long •  Environments: supermarkets and •  Centre of a1en6on shopping centres, playground, •  No social rules birthday par6es, bathrooms, •  Fear of failure •  Sensory experiences •  Unpredictable, telephone, baby crying meals •  Increases and is increased by anxiety Laughter Samson et al •  Fear of being laughed at: Gelotophobia •  Occurs in 45% of children with Asperger’s syndrome, but only 6% of typical children Coping with Anxiety •  Controlling your experiences •  Emo6onal blackmail •  Threats •  Passive aggressive •  Opposi6onal and non-­‐compliant Conference Presentations
KEYNOTE
Professor Tony Attwood
04/12/14 Anger
Coping with Anxiety
•  Controlling – Opposi6onal and Defiant Disorder or Pathological Demand Avoidance (Threats and destruc6on-­‐’domes6c terrorist’) •  Rou$nes and rituals – soothing and relaxing –predictable-­‐ become more prolonged and intrusive – Classic Au6sm •  Two out of three children and adolescents with Asperger’s syndrome have a problem with anger management. •  Sadness and anxiety expressed as anger •  Achieve solitude •  Dominance and control •  Thought blocker •  Anger due to not being valued and accepted (arrogance) •  Special interest •  Agitated externalized depression •  Computer games •  Frustra6on •  Explosion or melt-­‐down •  Not knowing what else to do (one track mind) •  Having a mental plan for the day and not coping with changes •  To cleanse the system or clear the air •  “It’s a bit like wan6ng to vomit and knowing you will feel ill un6l you actually throw up. You get it over and done with and feel be1er. Geung it out of your system” •  Only way to repair a feeling is to act it out, not reflec6on and relaxa6on Meltdown versus Tantrum From Anxiety to Meltdown by Deborah Lipsky
Meltdown Tantrum •  Overwhelmed by social, cogni6ve, •  Response to frustra6on linguis6c and sensory experiences •  Catastrophic reac6on •  Involuntary response •  Escape •  Solitude, reassurance •  Slow to recover The release of tension, like popping a balloon Meltdown ‘cleanses the system’ •  Emo6onal blackmail •  Instant recovery •  Non-­‐nego6able •  Asser6ve and calm •  Sensory over load and the need to escape •  “My brain doesn’t tell me soon enough” •  Triggers: No, wait, change and ‘not fair’ •  Like fire, anger can be controlled Problem Solving and Frustra6on •  ‘Thermometer’ of distress •  Quickly ‘hit the panic bu1on’ •  Intense nega6ve emo6onal reac6on •  Giving up quickly ends the pain GPS Two types of meltdown 1.  Outward directed and ‘blind rage’, Like a GPS, calmly redirect the emo6on (Sue Larkey) try to strike out and destruc9on 2.  Inward directed, despondent , a depression ‘aEack’ How Can You Manage Your Anger?
The Teen’s ReacAon to Being Different
Role Play Examples 1.  Physically. 2.  Intelligently. 3.  Using your imagina6on. 4.  Using your inner voice. 5.  Help from someone. •  Being insulted. •  Not being able to solve a mathema6cs problem. •  Being cri6cized. •  Calming down someone else. Four reac6ons: 1.  Depression and isola6on 2.  Imagina6on and fantasy Depression is the fraternal twin of anxiety. They play together in the mind, harves9ng mental energy, 3.  Arrogance and anger stealing it from things we want to do 4.  Observa6on and imita6on and think The heartache of having unmet needs •  Admit making a mistake. I could see no hope for the future •  Disclosure of feelings. Depression •  Seeking help. Debbie Denenberg: Depression is starva9on of the soul. The face lives in a world where it has surrendered to the conclusion that it does not belong there Michael Tolleson: There is no future or hope, only the desire to physically fold up, away from everything Conference Presentations
KEYNOTE
Professor Tony Attwood
Depression •  One in three adolescents with Asperger’s syndrome have the signs of a clinical depression 04/12/14 Reac6on to the Diagnosis •  Diagnosis of Asperger’s syndrome •  An autude of pessimism rather than op6mism •  Supressed anger becomes depression •  Few teenagers iden6fy the advantages of the diagnosis •  Distance themselves from the diagnosis Unusual Signs of Depression Associated with Asperger’s Syndrome •  A change in the special interest to a morbid or macabre topic •  Reluctant to let others know •  Fear of being singled out, not ‘normal’ and s6gma6zed •  Unlike adults, did not have pride in the diagnosis •  Watching movies with a theme of death and despair •  An a1empt to understand morbid thoughts and deep nega6ve inner emo6ons •  Depression A1ack Reasons for an ASD person to feel sad •  Loneliness •  Being rejected or humiliated by people at school •  Being bullied and teased by people at school •  Worry whether you will have a successful career •  Believe past bad experiences will con6nue forever •  Constant pressure to fit in and be like everyone else •  Feeling exhausted from trying to be accepted •  The loss of a friendship, pet or family member and liked •  Believing the cri6cisms of students at school •  Being sensi6ve to the suffering of others •  Not being able to cope with intense sensory sensi6vity •  Exhaus6on from always feeling anxious •  Too many changes in your life •  Being aware of your faults and being a perfec6onist •  Being diagnosed with Asperger’s syndrome •  Being bored at school •  Not geung the school grades to match your intelligence •  Worry about whether you will ever have a rela6onship •  Teased unmercifully in grade school because other students just didn’t understand my way of thinking •  Never understanding why I don’t fit in •  Self-­‐iden9ty based on cri9cisms parents, peers and professionals •  Disconnec6on between mind and body and being cogni6vely unaware of the warning signs of deepening sadness (lack of self-­‐awareness) •  Adolescent bullied and teased “How did you know I …..” •  Fewer, if any, friends to alleviate depression by compassion, reassurance, affec6on, distrac6on and enjoyable social experiences •  Difficulty resona6ng with, or being infused by the happiness of others •  Not having enough strategies to feel happy •  Try to resolve depression by solitary, subjec6ve thought or using the special again •  Not being understood by your parents interest as a thought blocker or energizer •  Feeling invisible at school thought I wasn’t good enough •  Difficulty conceptualizing and disclosing inner thoughts and feelings to •  Geung into trouble because of your anger Low Self-­‐Esteem •  I was afraid to be myself because I Factors that Prolong the Depression and Increase the Intensity Coping with Low Self Esteem •  “Those who suffer from au6sm” •  Become a recluse (bedroom) •  Escape into imagina6on, fantasy world where you are respected and valued (special interest, Dr Who, Harry Po1er) including imaginary friends (psychosis?) •  Would changing gender cure ASD? Strategies
This is Me Book: Quali6es in Personality and Abili6es •  Learn to imitate Personality Abili6es •  Observing, analysing and Kind Drawing and art ac6ng, to fake it (Mul6ple Caring Personality Disorder) Loyal friend •  Arrogance, self-­‐soothing and boosts self-­‐esteem (Narcissis6c Personality Disorder) •  Accep6ng that different is not defec6ve •  Find your ‘culture’ Honest Speak your mind Lego models Memory Mathema6cs Perfec6onist No6cing details Determined Expert on …… Brave Humour Conference Presentations
KEYNOTE
Professor Tony Attwood
Ring Binder Strategies 04/12/14 Self-­‐affirma6on Pledge. Liane •  Each quality at the top of a page •  Record examples of the expression of that •  The value of being different quality (a diary) •  Aspie achievers •  Photographs, copies of reports and grades, •  A hero not a villain (Beach Boys) compliments from friends and family, •  ASD gives quali6es as well as •  Quali6es of a hero in the family or character in a difficul6es film, TV programme such as Dr Who •  Be a first rate Aspie, not a •  Each admired quality of the hero has a page second rate neurotypical •  Confirming progress towards a valued personality •  The book is an an6dote to depression and builds Strategies for Authen6city a posi6ve self-­‐image •  Different is not defec6ve • I am not defec6ve. • I am different. • I will not sacrifice my self-­‐worth for peer acceptance. • I am capable of geung along with society. • I will ask for help when I need it. • I will be pa6ent with those who need 6me to understand me. • I will accept myself for who I am. •  Believe in yourself, have courage •  Learn to love yourself An Emo6on Repair Toolbox •  Self-­‐awareness Tools For self-­‐regula6on and clarity of thought •  Physical Tools For well-­‐being and energy •  Pleasure Tools For feeling good •  Thinking Tools •  Social Tools
To stay in touch with reality Session 4: Art and Pleasure Tools •  Examples of how sadness can be expressed in art, a picture is worth a thousand words •  Pleasures in life: ac6vi6es, experiences, thoughts, memories, people and animals, dreams of the future To combat loneliness •  Relaxa$on Tools To feel calm and confident Coping Strategies and Treatment •  “I have never met anyone with Asperger’s who was depressed when they were involved with a special interest” Nick Dubin •  “The special interest makes life worth living” Nick Dubin •  Iden6fying with the Aspie culture •  Being of service to others Session 8: Relaxa6on and Helpful and Unhelpful Tools •  Relaxa6on for self-­‐awareness •  Medica6on, pros and cons •  Other tools suggested by group members •  Legal (alcohol) and illegal drugs (marijuana) •  Project: Con6nued applica6ons and key strengths and an area in life the person would like to gain more success Conference Presentations
KEYNOTE
Professor Tony Attwood
Session 9: A Safety Plan 04/12/14 Depression ‘a1ack’ •  Stay calm and reassuring •  Over the last year, have you ever felt so sad that you have thought of ending your life? •  Stay with the person •  Do not ask what is causing the distress •  Explore why and what made you decide not to •  Do not try to fix the problem •  Construc6ve strategies •  Do not move too close •  Briefly explain that the feeling will go •  Minimal conversa6on or distrac6on •  Special interest as an ‘off’ switch Session 10: Your Future •  Time machine •  A celebra6on of an achievement in ten years 6me •  An achievement you have yearned for Conference Presentations
KEYNOTE
Dr. Patricia Daly
02/12/14 Quality of Life of Young People with Au6sm
Self-­‐Management for People with Au6sm
Patricia M. Daly, Ph.D., BCBA Mary Immaculate College Middletown Centre for AuAsm Conference, January 2015 •  Making choices •  Making decisions •  AdvocaAng for self •  RegulaAng own behaviour •  SeJng goals •  All require some self-­‐awareness Purpose of Presenta6on
Self-­‐Management
•  To highlight growing emphasis on SELF-­‐MANAGEMENT skills for children and youth with auAsm •  An aspect of Self-­‐Determina0on •  To provide a couple of examples of how it can be taught Self-­‐Determina6on (Shogren, Smith, Zager, & Simpson (2010) •  “VoliAonal acAons that enable one to act as the primary causal agent in one’s life and to maintain or improve one’s quality of life” (Wehmeyer, 2005). Components of Self-­‐Determina6on
•  Accepted as important element of quality special educaAon for adolescents •  Needs to explicitly taught Self Awareness Decision Making Choice Making Self DeterminaAon •  Teachers consider it important Problem Solving Goal SeJng Self Management Conference Presentations
KEYNOTE
Dr. Patricia Daly
Self-­‐Determina6on
Self-­‐Awareness
•  Is a developmental set of skills •  Faherty (2000, 2006) •  Children with auAsm have unique characterisAcs that might make learning these skills difficult – but NOT impossible •  Using Talking Mats (IRISS, 2006-­‐2014) •  Promote independence in Daily Living Skills Making Choices
Self-­‐Management as Pivotal
•  Structure vs Agency •  Social difficulAes •  Teaching choices across the day (Dunlap et al, 2013) • 
• 
• 
• 
• 
• 
• 
Materials to use in a task Between tasks Where to work (in the room) When to do a task What person to work with To end an acAvity To refuse an opAon •  Me books •  Using shaping, chaining, fading of cues/prompts •  Reduces dependence on others •  May increase with age •  Peers maber more with age •  ‘Fit’ mabers •  Young people with HFA have higher language levels, and cogniAve awareness and are MORE vulnerable to rejecAon and its negaAve effects. •  Special interests can be great or weird! Self-­‐Management and Teens
Self-­‐Management / Goal seNng
•  ParAcularly effecAve •  Self-­‐Monitoring – cued or un-­‐cued •  Self-­‐Recording – using visual supports •  Doesn’t need an ‘intervenAonist’ (adult) to be present •  Promotes independence •  Appeals to teens who seek independence •  Research support •  Daily living skills •  Social skills •  Both can teach self-­‐awareness – ‘mindfulness’ •  (Koegels in California – Self management a pivotal skill) •  Self-­‐Reinforcement •  Goal seJng and abainment 02/12/14 Conference Presentations
KEYNOTE
Dr. Patricia Daly
02/12/14 Cued Monitoring
Self-­‐Monitoring
•  MoAvAider •  Being aware enough to count instances of my own behaviour •  Child must be able to discriminate correct from incorrect instances of behaviour in someone ELSE first •  Child then idenAfies correct instances and incorrect instances in own behaviour •  Child then ready to learn to record somehow •  Cued or uncued? •  www.habitchange.com Discrimina6ng OTHERS’ behaviour – Ex. 1
Discrimina6ng own Responses
•  Hello, it’s a terrible day today. •  Hello, it’s a terrible day today. •  Do you like to play with Lego? •  It is very cold and rainy. •  Teacher / Parent •  I have a headache. •  I have a headache. •  Can I get you anything to help? •  Do you like to play with Lego? •  ‘If I say……’ •  ‘Is it OK to say….?’ •  Child •  Child makes appropriate •  I am hungry. [what could you say response (or learns several) that would be good if I said this?] •  I am hungry. [what would NOT be a good thing to say if I said this?] •  Child makes inappropriate response. Mo6vate Correct Responses
Add cued system – technology helps
•  Give points, tokens, sAckers for making correct responses. •  Use MoAvAider, Tablet, phone to remind •  You are TEACHING the process. •  Incorrect responses tend to come from ‘favoured’ topics. Conference Presentations
KEYNOTE
Dr. Patricia Daly
Goal SeNng
Self-­‐Management – Ex. 2
•  Very important to get ‘commitment’ to learn •  Child must see WHY this advantages them •  Cannot MAKE someone self-­‐manage •  Problem – soluAon book •  Two strategies for managing my anxiety •  Calming acAvity •  Use my Pip •  Recognise I am anxious – what are the behaviours? •  Get my book and open to ‘Anxiety’ problem page •  Open corresponding ‘Anxiety’ soluAon page, choose and do. Holifield et al (2010) study
•  Tony, 10 years 8 months old, IQ 70 mild auAsm •  Graham 9 years 4 months old, IQ 39, moderate auAsm •  Abending to task, academic accuracy in Language Arts and MathemaAcs •  Self-­‐monitoring sheets, cued every 5 minutes to …. Goal SeNng
•  Commitment •  Teenage girl with HFA – case study by C. Griffin •  SeJng a goal – •  Abaining a goal •  Social Validity •  Without a measurable goal – how do you know you met it? 02/12/14 Conference Presentations
KEYNOTE
Dr. Patricia Daly
Conference Programme
NOTES
Conference Presentations
Autism and happiness
KEYNOTE
Dr. Peter Vermeulen
Autism and happiness
Peter Vermeulen
Autisme Centraal, Belgium
www.autisme.be
What do outcome studies tell us?
• Outcomes in adulthood are highly variable
• Diagnosis is generally stable,
although autism symptoms and adaptive skills often improve
• Outcomes in social integration and independence: >50% poor outcome
Shortcoming of outcome studies
• Objective criteria don’t say much about quality of life…
• Too much focus on societal norms (Henninger, N. A., & Taylor, J. L. (2013). Outcomes in adults with autism spectrum disorders: a historical perspective. Autism, 17(1), 103‐116).
• Different picture when Quality of Life is used as outcome
(Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood A population‐based study. Autism, 15(1), 7‐20.)
Outcome studies
• Evaluate how people with ASD do in (adult) life
• Review: Magiati, I., Tay, X. W., & Howlin, P. (2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: A systematic review of longitudinal follow‐up studies in adulthood. Clinical Psychology Review.
But what are the criteria?
employment
relations / friends
health
cognitive functioning
living situation
autism symptoms
Quality of life (Robert Shalock)
Independence
Personal development
Self‐
determination
Social participation
Well‐being
Interpersonal relationships
Physical
Social inclusion
Material Rights
Emotional
Conference Presentations
Autism and happiness
KEYNOTE
Dr. Peter Vermeulen
Quality of Life in ASD
Objective Quality of Life in ASD
Relationship
88% 12%
Employment
Living situation
21%
45%
49%
27%
Mental health care
now
36% 7%
21% past
none
17% 62% Source: Barneveld et al. (2014)
Happiness: life satisfaction
Subjective Quality of Life in ASD
Satisfaction about:
• Living arrangements:
• Work / education: • Physical condition:
• Social relationships:
• Future perspective:
ASD
ASD
ASD
ASD
ASD
<
<
>
<
<
contr
contr
contr
contr
contr
Source: Barneveld et al. (2014)
Control group = adults with other child psychiatric disorders, e;g. ADHD Lack of happiness
Not happy
Very unhappy
Mental health problems
anxiety
depression
stress
Conference
Conference
Presentations
Programme
Autism and happiness
KEYNOTE
Dr. Peter Vermeulen
Life time prevalence
Mental health problems in autism
100%
90%
80%
70%
60%
15 ‐65%
10 ‐ 55%
ASD
50%
40%
30%
TD
10 ‐ 30%
15 ‐20%
20%
10%
0%
depression
anxiety disorder
We focus mainly on negative feelings
A more positive approach
Why focus on positive feelings?
Fostering positive feelings
• Link between negative feelings and detail focus + rigidity in thinking
• Positive feelings increase
– Cognitive functioning
– Flexibility
– Adaptability
Fredrickson & Joner (2002)
w w w. a u t i s m e c e n t r a a l . c o m
Conference Presentations
Autism and happiness
KEYNOTE
Dr. Peter Vermeulen
Why focus on positive feelings?
Assessment of happiness
• Avoid neurotypical projections (well‐being is very subjective)
• Be careful with self‐report
– Difficulties with self‐understanding
– Difficulties with abstract concepts
– Context blindness
• Autism friendly assessment: concrete and visual
Theory of mind
ToM and self‐consciousness
Theory of Mind
The ‘mind’ of
other people
Your own
‘mind’
If people with ASD find it difficult to reflect on other people’s mind, then it must be equally difficult to reflect on their own mental states. Semantic knowledge vs differentiating emotions
• Theory of Own Mind: Individuals with autism may have greater difficulty representing their own beliefs than the beliefs of other people. (Williams & Happé, 2010)
Assessment of positive feelings!
Conference Presentations
Autism and happiness
KEYNOTE
Dr. Peter Vermeulen
“Feel‐good‐street”
Make it concrete and useful:
feel‐good‐box
Support: Goodness of fit
Goodness of fit
Quality of life in adults with ASD correlates with:
IQ
Severity of autism
Amount of informal support
Amount of formal support
Perceived informal support
Discrepancy between needed formal support and support given
Source: Renty & Roeyers (2006)
Two models of disability
Medical model
Problem
=
disorder
Social model
Problem
society
The person
Twin track approach
Society
Disorder
Changing the
environment
Changing the
person
adapting
teaching
disability
=
Society / the environment
disability
Autism is sometimes a disability, but not always
Conference Presentations
Autism and happiness
KEYNOTE
Dr. Peter Vermeulen
High expectations with high levels of support
• Give responsibility
• Give challenges
• Give control
• And give support, to ensure success!
Positive self‐esteem
• Doing things that you can be proud of
• Having the feeling of contributing
• Many think that work is only possible if someone feels good, but it is work that makes someone feel good
eustress
Productivity / well‐being
• Avoid learned helplessness
(autism is never an excuse, nor an alibi)
Eustress en distress
boredom
distress
Pressure
A well filled day
• Prevents boredom
• Prevents getting stuck in stereotyped activities / obsessions
• Prevents challenging behavior
• Prevents worrying and anxiety
• Creates opportunities to learn new skills
• Every person with ASD can contribute to society!
Less autistic does not necessarily mean happier!
• What are the goals of treatment?
– Higher IQ? Lower score on symptoms measurement? Normalisation?
– Or: well‐being?
So, • Focus on what they CAN do…
• Focus on QoL, not the autism symptoms
Not less autistic, but “autistically happy”
Conference Presentations
Autism and happiness
KEYNOTE
Dr. Peter Vermeulen
Emotional well‐being
• Foundation: autism friendly environment!!
(Æ freedom of stress)
• Balance between protection and challenges
(Æ status / autonomy / existential fulfilment)
• Ensure experiences of success
(Æ pride / positive self‐esteem)
• Focus on positive feelings,
not the negative ones (Æ contentment / satisfaction)
THANK YOU
FOR YOUR ATTENTION!
www.autisme.be
peter_autisme
Strategies to improve happiness
• Good assessment: what gives the person with autism good feelings?
• Proper balance between protecting and challenging
• Focus on strengths and interests: make sure they can be proud of themselves
• Not less autistic, but “autistically happy”
Conference Programme
NOTES
Conference Presentations
KEYNOTE
Professor Tony Attwood
04/12/14 8 Dimensions Challenging Behaviour and Au1sm
Diagnos:c Criteria for Au:sm • Qualita:ve impairment in social interac:on • Qualita:ve impairments in communica:on • Restricted, repe::ve and stereotyped paMerns of behaviour, interests and ac:vi:es 1. 
Social understanding 2. 
Communica:on abili:es 3. 
Sensory sensi:vity 4. 
Anxiety 5. 
Change 6. 
Developmental level 7. 
Learning profile 8. 
Movement disturbance The Con:nuum of Au:sm: Strategies Aloof
•  Greatest confusion in understanding and rela:ng to people, severest au:sm •  People are perceived as intrusive, aversive and best avoided. •  Child learns strategies to avoid social interac:on, including finding a solitary sanctuary, non-­‐
compliance and being unpleasant (hiTng) Passive •  Approach others for assistance such as opening the door to the garden •  Passively accept social interac:on •  Prefer to be alone but will tolerate group ac:vi:es for a short while •  The child finds something more interes:ng than socializing Passive Strategies •  Socialising in a one on one or very small group ac:vity •  Make the ac:vity fun and successful (errorless learning) •  Sharing and turn taking ac:vi:es e.g. using a swing or comple:ng an inset board •  Imita:on of each other and early social games such as chasing and hide and seek •  The child watches videos of his or her real life social experiences •  Asking the child for help •  Encouragement for maintaining the interac:on •  Adult beside the child provides prompts of what to do and say in a social situa:on •  Observe the natural play of peers and prac:ce with an adult role playing a friend. •  Quiet, gentle social approach. •  Avoid group situa:ons •  Avoid intrusive eye contact, touch and specific sensory experiences (especially shou:ng!) •  Gra:tude for compliance •  Ac:vity is already prepared and completed quickly, then the child is free to find solitude •  Minimum speech from the adult •  Social contact for enjoyable ac:vi:es such as rough and tumble play Social Issues •  Popula:on density (social situa:ons aversive) •  Intrusive peers and adults (affec:on) •  Care givers intui:ve understanding of au:sm •  Empathic aMunement •  Contaminated by the nega:ve emo:ons of others •  Need for solitude Laura Anderson “He’s in his own world today, and I’m not invited” Accidentally Beau:ful Conference
Conference
Presentations
Programme
9th and 10th January KEYNOTE
2015 – City North Hotel, Dublin
Professor Tony Attwood
2. Communica:on Frustra:on: Problems With Comprehension. The mannerisms have a message Communica:on of thoughts and •  Verbal complexity and length of uMerance. Strategies •  Clear, simple instruc:ons. emo:ons •  Demonstra:on. •  When behaviour is the only means 04/12/14 of communica:on •  Match the length of uMerance to the child’s level of comprehension and •  Acquire an alterna:ve means of memory. communica:on using ac:ons, •  Thoughts such as ‘I can’t cope’ or ‘I need help’ •  One instruc:on at a :me. gestures, vocaliza:ons and •  Processing :me speech •  Feelings such as jumping for joy or ‘in a flap’ Frustra:on: Problems With Expression •  Use the behaviour as an early warning system of agita:on •  Foreign phrase dic:onary Value of alterna:ve and augmenta:ve communica:on(Gestures and •  ‘Thermometer’ pictures) 3: Sensory Sensi:vity. Repe::ve Ques:ons •  Acute auditory sensi:vity to specific sounds (Hyperacusis) •  Social echolalia. •  Sudden or ‘sharp’ noises, ( dog barking, coughing, click of a pen top) •  To maintain the interac:on. •  Small electric motors or a specific pitch •  Predict what you are going to say next: What colour is your car? •  Reassurance that you have not changed your mind •  Temple Grandin “ Sudden loud noises hurt my ears like a den:st’s drill hiTng a nerve. High pitched con:nuous noises such as hair dryers and other small motors are annoying. All the behaviour modifica:on in the world is not going to stop an au:s:c child from screaming when a noise hurts his ears.” Sugges:ons to Reduce Auditory Sensi:vity Temple Grandin Stephen Shore • Iden:fy and avoid the sound • Barrier such as ear plugs • Camouflage the percep:on of the sound with music -­‐ iPod • Social Story “I pulled away when people tried to “Haircuts were always a major hug me, because being touched event. They hurt! To try to calm sent an overwhelming :dal wave of s:mula:on through my body.” “Church was a nightmare because Tac:le Defensiveness • Acute sensi:vity to specific tac:le experiences • Sensi:vity to touch and texture on par:cular parts of the body (scalp, upper arms, palms of hands and soles of feet) me, my parents would say that hair is dead and has no feeling. It the peTcoats and other Sunday was impossible for me to clothes itched and scratched. Many communicate that the pulling on behaviour problems in church the scalp was causing the could have been avoided by a few simple clothing modifica:ons.” discomfort.” Conference
Conference
Presentations
Programme
9th and 10th January KEYNOTE
2015 – City North Hotel, Dublin
Professor Tony Attwood
Tac:le Defensiveness Simon Barron 04/12/14 Strategies for Sensi:vity to Taste and Texture “I was supersensi:ve to •  Gestures of affec:on perceived as too the texture of food and I intense a sensa:on had to touch everything •  Aversion to certain fabrics with my fingers to see •  Strategies: ‘deep pressure’, sensory how it felt before I could integra:on therapy put it in my mouth. I really Sensi:vity to the Taste and Texture of Food hated it when food had things mixed with it. I •  Sensi:vity to fibrous texture and mul:ple flavours could never put any of it •  Sensi:vity to par:cular aromas into my mouth. I knew if I •  Check diet •  Avoid programs of starva:on to encourage a wider range of foods •  Avoid programs of force feeding •  Accept the unusual diet at meal:mes •  Try new foods during programs of interes:ng sensory experiences •  Distrac:on, relaxa:on and rewards to encourage increased tolerance •  Problems at meal :mes that are not due to having to did I would get violently sick.” sit s:ll, talk, socialize or try unan:cipated food A World Of Terrifying Sensory Experiences Temple Grandin • Hyper-­‐vigilant and ‘shell shocked’ • Need a coping or escape mechanism • Self hypnosis, being mesmerized by a repe::ve ac:on or sensa:on “Intensely preoccupied with the movement of the spinning coin or lid, I saw nothing or heard Crave Sensory Experience •  Hyperac:ve •  ‘Affec:on’ seeking •  Sensory diet Other Sensory Systems •  Mind and body connec:on •  Propriocep:ve system (posi:on and movement of the body) •  Running: “I had to get my body nothing. People around back from pounding my feet” me were transparent •  Sense of smell (perfumes, cleaning products, bathrooms) and no sound intruded on my fixa:on. It was as if I was deaf.” 5: Coping with change Donna Williams “I loved to copy, create and order things. I Therese Jolliffe Fascina:on with symmetry and order loved our set of encyclopedias. They had leMers and numbers on the side, and I “Reality to an au:s:c person is a “The fun came from seTng up and arranging things. Maybe was always checking to make sure they confusing, interac:ng mass of events, were in order or puTng them that way. I this desire to organise things rather than play with things is the people, places, sounds and sights. There was making order out of chaos.” seems to be no clear boundaries, order or meaning to anything. A large part of my life is spent just trying to work out the paMern behind everything. Set rou:nes, :mes, par:cular routes and rituals all help to get order into an unbearably chao:c life.” reason I never had any great interest in my peers.” Sean Barron “I loved repe::on. Every :me I turned on a light I knew what would happen. When I flipped the switch, the light went on. It gave me a wonderful feeling of security, because it was exactly the same each :me.” •  Repe::ve behaviours and rou:nes to achieve sameness and predictability •  Watching the same video again and again Conference
Conference
Presentations
Programme
9th and 10th January KEYNOTE
2015 – City North Hotel, Dublin
Professor Tony Attwood
Prepara:on for Change Organised and Structured •  Sequence of ac:vi:es. •  Explana:on, prepara:on and reassurance. •  Boxes or pictures. •  Social Stories. •  What to do, •  Compulsion for comple:on. •  Who with, •  Transfer to another school. •  Dura:on (completed, music, clock) •  What next. 7. Learning Profile Visualizers Pictures to see the sequence of ac:vi:es 6: Developmental level Explora:on Through Sensa:on •  The person’s developmental level in exploratory play •  Exploring the world through taste, touch, aroma, sound, colour and perspec:ve •  Prior stage to construc:ve and imagina:ve play •  Introduce a wide range of sensory experiences •  Sensory integra:on therapy •  Can be used as a reward •  If the ac:on is dangerous or socially inappropriate, find an acceptable subs:tute One Track Mind Mistakes •  Train track. •  Engineers •  Learning may be facilitated by silent demonstra:on. •  ‘A picture is worth a thousand words’ Curriculum on the I-­‐Pad Perfec:onism •  One-­‐track mind. Fear of making a mistake •  The last to know and seek help if they are •  Don’t try, you don’t make a on the wrong track. •  Lose train of thought if interrupted. •  Con:nue using incorrect strategies and not learning from mistakes. mistake. •  An adult’s ability is not perfect. •  Model how to cope with frustra:on Coping With Mistakes •  Self-­‐percep:on as an adult. •  Cogni:ve style of no:cing details •  Fear of appearing stupid and being ridiculed by peers. and errors. •  Limited ability to tolerate frustra:on. •  Not listening to advice Strategies 04/12/14 •  Frustra:on volume control an on/
•  Compulsion for comple:on (switch tracks) off switch. •  Anxiety increases cogni:ve rigidity •  Relaxa:on programs Au:sm Friendly Classroom Weak Central Coherence Mo:va:on •  Remarkably good at aMending to detail but appear to have considerable difficulty perceiving and understanding the overall picture or gist. •  Quiet, well-­‐structured classroom. •  Comple:on •  Backward chaining •  Rolled up paper. •  Avoid sensory overload. •  No errors •  What is relevant and redundant. •  Minimal changes in rou:nes and •  Special interest •  Deciphering the paMern or meaning. staff. •  Visible daily schedule of ac:vi:es and prepara:on for transi:ons. •  Intellectual vanity •  Typical children mo:vated by rewards, children with au:sm mo:vated to avoid errors. Conference
Conference
Presentations
Programme
9th and 10th January KEYNOTE
2015 – City North Hotel, Dublin
Professor Tony Attwood
ToureMe’s Disorder: 8: Movement Disturbance Motor Tics •  Apraxia and Dyspraxia •  Blinking •  Problems with star:ng, stopping, con:nuing, combining and •  Grimacing switching motor ac:ons •  Nose twitching •  Some ac:ons are to help start or switch motor ac:ons •  Touch to ini:ate and rhythm to coordinate movements •  Advice from an Occupa:onal Therapist and Music Therapist •  Rhythm
•  Planning the movement 8 Dimensions
Other Dimensions
•  Pain •  Epilepsy •  ADHD •  Personality •  “I needed excitement to feel alive” 1. 
Social understanding 2. 
Communica:on abili:es 3. 
Sensory sensi:vity 4. 
Anxiety 5. 
Change 6. 
Developmental level 7. 
Learning profile 8. 
Movement disturbance 04/12/14 •  Lip pou:ng •  Shoulder shrugs •  Arm and head jerking Vocal Tics •  Grun:ng Complex Motor or Behavioural and Emo:onal Tics •  Touching the mouth area •  Clapping •  Barking •  Face and head slapping •  Animal noises •  Hopping •  Coughing/sniffing •  Touching objects •  Licking objects •  Emo:on :cs (injury to others, crying) Conference Programme
NOTES
EXHIBITORS
EXHIBITORS
Conference Programme
EXHIBITORS
ASPIRE IRELAND
Aspire was established by a small
number of parents in 1995 to provide
support for those with the syndrome
and their families, and to encourage and
undertake research into the condition.
It is our aim to support people with
Asperger Syndrome (AS) to lead full and
independent lives.
Des McKernan
T. +353 (0) 1 878 0027
E. [email protected] or
[email protected]
Website: www.aspireireland.ie
Aspire - The Asperger Syndrome
Association of Ireland,
Coleraine House, Carmichael Centre,
Coleraine Street, Dublin 7, Ireland
_______________________________
AUTISM NI
Autism NI is a parent led partnership
organisation having been formed to
promote positive collaboration between
parents, professionals and individuals
with Autism to address the need for
appropriate services. This partnership
ethos extends to the charities promotion
of a multi disciplinary, cross agency
response to issues such as assessment,
diagnosis and early intervention. The
charity’s mission to support parents and
individuals with an Autistic Spectrum
Disorder is core to its work and is based
on individualised assessed need. The
charity is committed to promoting best
practice, accessible to all irrespective of
family circumstances.
KINDERCRAFT
Kindercraft has established a reputation
as one of Ireland’s leading educational
furniture manufacturers, offering a
comprehensive selection of furniture,
using robust, practical design, coupled
with quality materials and high
manufacturing standards, which ensure
product quality and safety. Our wide
range of attractive furniture units, offers
you a high degree of freedom of choice.
The high quality craftsmanship and use
of bright colours, help to make learning
enjoyable and fun.
Stephen McErlean
T. +44 (0)28 2582 2273
F. +44 (0)28 2582 1395
E. [email protected]
Website: www.kindercraftproducts.com
Unit 3 Ballymacombs Road,
Portglenone, Co. Antrim, BT44 8NQ
_______________________________
LEARNING SPACE
Learning Space specialises in educational
and sensory resources, providing a wide
range of exciting toys, games, puppets,
software and books. In fact, we provide
almost any product which captivates,
inspires and educates children! We
offer traditional, developmental and toys
for those with additional needs. We also
have an extensive range of toys and aids
to help with Autism, Downs Syndrome,
Dyslexia and many more additional
needs. From sensory rooms to school and
nursery setups, we provide everything to
create a fun ‘Learning Space’.
Arlene Cassidy
T. +44 (0)28 9040 1729
F. +44 (0)28 9040 3467 E. [email protected] Website: www.autismni.org
Lorraine McAteer
T. +44 (0)28 9031 9360
F. +44 (0)28 9085 0806
E. [email protected]
Website: www.learningspaceni.co.uk
Donard, Knockbracken Healthcare Park
Saintfield Road, Belfast, BT8 8BH
11A Fountain Centre, College Street
Belfast, BT1 6ET
MIDDLETOWN CENTRE
FOR AUTISM
Middletown Centre is funded by the
Department of Education, Northern
Ireland and the Department of
Education and Skills, Republic of
Ireland. The purpose of the Centre is to
support the promotion of excellence in
the development and co-ordination of
education services to children and young
people with autism. This is undertaken
through the Centre’s learning Support
and Assessment Service, Training Service
and Research and Information Service.
Currently the Centre works on a
referral basis with some of the most
complex children and young people
in the schools system in Ireland and
Northern Ireland; this intervention work
includes transdisciplinary assessment,
intervention, capacity building in school
and training for parents. This work
is conducted by a team of specialist
staff who work closely with parents,
schools and local services. The Centre
provides training for parents and teachers
throughout Ireland and Northern
Ireland and this training is delivered
by the Centre’s specialist team and also
in partnership with key National and
International providers and agencies.
The Centre’s intervention and training is
underpinned by its Research Service. The
work of the Research Service includes,
conducting follow-up on all children
and young people who have been
referred to the Centre; the development
of supportive educational resources
based on intervention work; producing
quarterly Research Bulletins; conducting
research that is commissioned by the
funding Departments and undertaking
research projects in areas relevant to
the work of the Centre. The Centre’s
Services working together provide a
comprehensive and dymanic support to
children and young people with autism,
their families and their schools.
Dr. Fiona McCaffrey
(Head of Research and Development)
T. +44 (0)28 3751 5750
F. +44 (0)28 3751 5758
E. [email protected]
Website: www.middletownautism.com
35 Church Street, Middletown
Northern Ireland BT60 4HZ
Conference Programme
EXHIBITORS
NATIONAL AUTISTIC
SOCIETY NORTHERN
IRELAND
We are the leading UK charity for
people with autism (including Asperger
syndrome) and their families. We provide
information, support and pioneering
services, and campaign for a better world
for people with autism. Our work relies
on your support, so please get involved
or donate today.
Shirelle Stewart
T. +44 (0)28 9068 7066
F. +44 (0)28 9068 8518
E. [email protected]
Website: www.autism.org.uk
59 Malone Road, Belfast,
County Antrim, BT9 6SA
______________________________
OUTSIDE THE BOX
Outside The Box Learning Resources
regularly tours the country to support
CPD training by providing a tailored,
specialised book display. Outside The
Box also attends most educational
exhibitions such as INTO, NAPD,
IPPN, ILSA, PDA and many others
Conor Holmes
T. +353 (0)45 409322
F. + 353 (0)45 409959
E. [email protected]
Website: www.otb.ie
W6W Tougher’s Business Park
Newhall, Naas, Co. Kildare, Ireland
SKM PRODUCTS
SKM Products are delighted to present
our new range of height adjustable
activity tables with a range of accessories.
Our exciting new developments are
the result of ongoing research and
development and are driven by feedback
from clients, teachers, therapists and
other health professionals. The needs of
our clients are our main priority.
Patricia Kinsella
T. +353 (0)1 4569838
F. +353 (0)1 4569839
E. [email protected]
Website: www.skmprod.com
Ballymount Trading Estate
Ballymount Road, Walkinstown
Dublin 12
______________________________
TAKE TEN LTD
Research shows that the emotional
health of pupils is key to their ability to
learn effectively, but children of all ages
face considerable pressures at home, in
their social circles and in the classroom.
Improving emotional resilience and
learning to cope with stress are very
powerful tools that will help children
both now and in the future. Not only
can it help with concentration levels and
general behaviour, it can also lead to
improvement performance and higher
attainment in the majority of pupils.
Take Ten can help across all age groups,
including those in primary, secondary
level and special education.
Fintan Connolly
T. +44 (0)28 9026 5135
E. [email protected]
Website: www.taketenteam.com
400 Springfield Road
Belfast, BT12 7DU
THINKING TOYS
Thinking Toys recognises that all kids are
unique and each has their own individual
needs and some kids have very special
needs. Thinking Toys endeavours to
provide products that add value to the
user by using play to create stimulation
in specific areas of need. Finding
products that can assist kids with their
specific needs can be difficult, frustrating
and time consuming. We strive to
eliminate these issues for parents and
professionals alike.
Aine Conacur
T. +353 (0)6 137 4402 or +353 (0)85
889 4855
F. +353 (0)6 137 5261
E. [email protected]
Website: www.thinkingtoys.ie
Thinking Toys, Hill Road
Killaloe, Co. Clare
_______________________________
TONY THE TURTLE BOOKS
Stories for children who feel and see the
world differently. “Tony’s wish is that
these stories positively support children
on the autism spectrum and their parents
overcome the challenges they face in
everyday life”. Featured on the RTE Toy
Show 2014.
Val Sheehan
T. +353 (0) 86 384 7666
E. [email protected]
Website: www.tonytheturtle.com
Carrigaline, Co. Cork
NOTES
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Conference Programme
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Sponsors / Exhibitors
Middletown Centre for Autism
wish to acknowledge & thank
the City North Hotel for their
support & hospitality during the
conference
Happening Conference Organisers
35 Church Street
Middletown
Co. Armagh
BT60 4HZ
Northern Ireland
Belfast Office
9 Wellington Park
Belfast BT9 6DJ
Northern Ireland
Dublin Office
57 Clontarf Road
Dublin 3
Tel: 028 9066 4020
E-mail: [email protected]
Tel: 01 531 4118
E-mail: [email protected]
Design & Print: [email protected]
Middletown Centre for Autism