Transcript Autism Spectrum Disorder and RTS - Rubinstein – Taybi Syndrome

Autism Spectrum Disorder in Rubinstein-Taybi
syndrome
Dr Jo Moss & Dr Jane Waite
Cerebra Centre for Neurodevelopmental Disorders
School of Psychology, University of Birmingham
Every child is different!
Autism Spectrum Disorder in Genetic Syndromes
Social-emotional reciprocity:
• Building friendships
• Reciprocity
• Initiating and maintaining
• Emotions
• Nonverbal & verbal communicative behaviours
• poorly integrated verbal and nonverbal
communication
• Eye contact
• Gestures
• Facial expressions
Where do people with Autism look?
Autism Spectrum Disorder in Genetic Syndromes
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Repetitive motor movements (body, hand, object)
Insistence on sameness e.g. Adherence to routines
Restrictive interests
Repetitive speech
Compulsive behaviours e.g. Lining up objects
Why might it be important to understand and identify ASD?
Making sense of difficulties
Understanding
behavioural challenges
Understanding additional
needs outside of ASD
specific needs
Planning for the future
Getting the right support
Help to guide approaches to
behaviour management,
education and support
services.
Access to Autism ‘sensitive’
resources might be made
available.
How common is Autism Spectrum Disorder in RTS?
100
Autism Spectrum Disorder
Autism
75
50
25
0
Oliver et al. (2011) JADD
Does ASD fit with what we know
about RTS?
Highly
Sociable
Love adult
attention
Happy,
friendly
Heightened
Approach
Behaviours?
No
Stranger
Danger?
Galera et al. (2009)
No ASD
ASD
We need to look at behaviour in detail understand
why it might occur!
What do we see in
RTS?
Autism Spectrum Disorder in Genetic Syndromes
Parents completed the social communication questionnaire.
Social Interaction Subscale
ASD:
228
individuals
aged 4 – 46
years
FXS: 196
RTS: 87
individuals individuals
aged 6 – 47 aged 4 – 59
years
years
DS: 132
individuals
aged 4 – 62
years
Powis, 2013
ASD
TD Child
RTS
TD Adult
Parents completed the social communication questionnaire.
Social Communication Subscale
ASD:
228
individuals
aged 4 – 46
years
FXS: 196
RTS: 87
individuals individuals
aged 6 – 47 aged 4 – 59
years
years
DS: 132
individuals
aged 4 – 62
years
Powis, 2013
Parents completed the social communication questionnaire.
Repetitive Behaviour Subscale
ASD:
228
individuals
aged 4 – 46
years
FXS: 196
RTS: 87
individuals individuals
aged 6 – 47 aged 4 – 59
years
years
DS: 132
individuals
aged 4 – 62
years
Powis, 2013
An interesting profile in RTS?
Repetitive
behaviours
When we looked at…..
Autism Spectrum Disorder
ASD
Difficulty with
Social Interaction
What we found…..
64.9%
Difficulty with Social
Communication
Repetitive
behaviours
RTS
However....
Difficulty with
Social Interaction
Difficulty with Social
Communication
Does it really matter?
Implications for
intervention
Pragmatic
argument
If concerned about ASD get your child assessed
Do not wait to start trying ASD strategies
Do not accept ‘it is just part of RTS’
The process of getting an ASD assessment (UK)
Referral G.P, Paediatrician,
Health Visitor or other health
professional
Allocation of case
coordinator in the autism
team (MDT team)
Discussion about the process
of having the assessment
including how the outcome
will be communicated.
Assessment will be
conducted
Assessments should include observations of the person.
This often includes the Autism Diagnostic Observation Schedule (ADOS)
Autism Diagnostic Observation Schedule – Second Edition
Aggression
Temper outbursts
Anxiety
Other behaviours
Irritability
Overactivity
Finger posturing
Stereotyped
behaviours
Complex mannerisms
Directed vocalisations
Echolalia
Repetitive interests
Pointing
Self-injury
Language and
communication
Stereotyped phrases
Intonation
Sensory interests
Gestures
Behaviours
of interest
Speech abnormalities
Reciprocity
Responsiveness
Creativity
Imaginative play
Showing
Functional play
Social overtures
Social interaction
Play
Requesting
Joint attention
Functional imitation
Giving
Symbolic imitation
Shared enjoyment
Eye contact
Facial expressions
Autism Diagnostic Observation Schedule – Second Edition
Toddler Module (free play, blocking toy play)
Be aware that in some children and young
people there may be uncertainty about the
diagnosis of autism, particularly in:
• children younger than 24 months
• children or young people with a developmental
age of less than 18 months
• children or young people with a complex
coexisting mental health disorder, sensory
impairment (for example severe hearing or
visual impairment), or a motor disorder such as
cerebral palsy.
So what do we do....
Range of interventions:
-Social interaction
-Communication
-Repetitive behaviour
Most strategies rely on increasing structure and
improving communication and choice.
Social Interaction and Communication
Start early and ask for a speech and language referral.
Offering choice can
reduce anxiety.
Pictorial Exchange
Communication
System (PECS)
Clearly indicate the
end of an activity to
help with
transitions.
Early intervention for behaviours that
challenge:
http://www.challengingbehaviour.org.uk/
www.findresources.co.uk
http://w3.cerebra.org.uk/research/researchpapers/self-injurious-behaviour-inchildren-with-intellectual-disability/
Changes in routine and unpredictable events can
be distressing for children with RTS and ASD.
Visual Supports (to increase routine and predictability)
Sequencing – Now and Next
Visual supports be helpful at managing transitions and change
Managing repetitive behaviours
• Aim to reduce/restrict repetitive behaviour/ rituals
etc rather than stop them completely.
• Make gradual changes rather than sudden
removal of objects or changes in routine
• Be mindful that replacement behaviours may
develop.
• General principal is the graded change technique
which can be used for a number of different
behaviours and interests.
Resistance to Change:
Small changes: changing/moving furniture
Case study: Emily
Emily could not tolerate the
smallest change in her
physical environment.
Everything had to be ‘just so’ and
for years the furniture had
been arranged in exactly the
same way.
Successful solution:
• Step one: They used tape to mark an
outline round the sofa and explained to
Emily that the sofa had to be within these
limits.
• Step two: At a small distance at a time, her
parents moved the tape, enlarging the area in
which the sofa was located. Each time they
repositioned the sofa within these limits.
Example from Whitaker (2005).
Challenging behaviour and autism
Resistance to Change:
moving from school to college/ work
Case study: Charlie
• Charlie secured himself a part-time job at bakery.
• Charlie was gradually integrated into the work place over
a long period of time.
• Initially Charlie worked two hours per week at the
company, which was soon increased to half a day a week
and then again up to one day a week. Over time this will
increase until Charlie works there full time.
Object Attachments
Case study: Patrick
Patrick refused to leave
his blanket at any time.
Since he was coming up
to school age this started
to look inappropriate. His
mother could only take
the blanket from him at
night while he slept.
She started to cut small
pieces off the blanket at
night until this was faded
to a small piece that he
could carry in his pocket.
1
0.8
0.6
0.4
0.2
0
1
2
3
4
5
6
7
8
9
Weeks
Size of blanket (m2)
Howlin (2005) Children with Autism and Asperger Syndrome
Lining up objects
• Step one: gradual
reduction of number of
cars from 50 to 20
• Step two: Further
reduction in length of
lines to 5 cars only
• Step three: Pairs of cars
only allowed in house,
thought these scattered in
various rooms
Howlin (2005) Children with Autism and Asperger Syndrome
Environmental Considerations:
• Tailor visual supports so that they are meaningful for the
child or young person , for example, words, pictures or
symbols
• Making reasonable adjustments or adaptations to the
amount of personal space given
• Considering individual sensory sensitivities to lighting, noise
levels and the colour of walls and furnishings.
Summary
• Some possible strategies that might help but this is not
an exhaustive list.
• Key points to remember:
• Work to modify the behaviour not eliminate it.
• Make gradual rather sudden changes in routine and the
environment.
• Take small steps
• Can take a long time before you see results.
• Deal with one behaviour at a time.
• Keep an eye out for any ‘new’ behaviours
• Young children: prevention is better than intervention.
For more information:
www.cerebra.org.uk:
Thank you!
[email protected]
[email protected]
www.findresources.co.uk
Who are we!
http://www.findresources.co.uk/about-us
Thank you!
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