Dissecting the Challenges looking at complex needs
Helen Appleton
Family Support Therapist
Giant Steps Sydney
www.giantsteps.net.au
Background Information
• A school for children with autism
• Community approach with a trans-disciplinary
team
• Whole family approach, incorporating:
•
•
•
•
Home visits
Community support
Parent support groups
Siblings support program
• Development of family support
Giant Steps - The Program
School program that focuses on strengths and the learning style of ASD:
- Functional / in context
- Motivating
- Edge of learning
- Curriculum based
- Engagement
- Communication
- Sensory considerations
- Environment
- Routines
- Emotional regulation
- Choice
Programs created by multidisciplinary team to ensure all these issues are
addressed.
Understanding our Students
Each student has:
- IP
- Profile
- Communication report (expressive, receptive, social
foundation skills)
- Sensory profile
- Independence checklists (eg Teeth brushing, dressing)
- DBC
- Learning styles
- Emotional Regulation needs
- Engagement support profiles
Giant Steps Cohort
- 74 students aged 3-23 years
- Primary diagnosis of moderate to severe autism,
all with comorbid mild to severe intellectual
disability
- 21% have medical conditions requiring treatment
(epilepsy, coeliac, bowel)
- 32% have a psychiatrist overseeing their mental
health concerns
- 96% reach clinical standards for Problem
Behaviours (DBC)
Case Study – Will
- Initial Diagnosis
-
Autism
Mild Intellectual Disability
- Family situation
- Changes over time:
-
-
8 years old – afterschool routines, sibling relationships
9 years old – community access, challenging
behaviours, medical concerns
10 years old – harm to self, medical changes,
challenging behaviours
Will’s Family
Issues:
- Safety for Will and his siblings
- Absconding
- No community access
- Agencies withdraw – no respite
- Extended family can no longer help
- Transport threatened
- Possible relinquishment
Case Study – Will
Safety &
immediate
support
Function of
Behaviour?
Changes?
Communication
Behaviours of concern:
- Self injurious behaviour
- Physical behaviours
towards others
- Drop in communication
- Rigid behaviours
- Highly obsessive
behaviours / routines
- Mood lability
- Absconding
Engaged?
Other
concerns?
Case Study – Will
Self injurious behaviour
Medical / Pain
Teeth
Bowel
Head aches / migraines
Puberty / hormones
Seizures
Physical behaviours
towards others
Communication
Anxiety / Fear
Frustration
Sensory
Case Study – Will
Drop in Communication
Loss of skills
Motivation
Ability
Rigid behaviours
(meltdowns)
Highly obsessive
behaviours / routines
Anxiety / Fear
Control
Obsessive Compulsive
Case Study – Will
Mood lability
Internal
Puberty
Pain
Emotional Regulation
Anxiety
Absences, sudden changes
in demeanour and
movement
Medical
Neurological activity
Case Study – Will
Teeth
Medical
Seizure activity
Developmental
Paediatrician
Medication
Paediatric
Neurologist
Behaviour
Changes
Bowel
Head aches / migraines
Puberty / hormones
Ability
Neurological activity
Case Study – Will
Anxiety / Fear
Mental
Health
Anxiety
ADHD
OCD?
Developmental
Paediatrician
Medication
trials
Paediatric
Psychiatrist
Behaviour
Changes
Frustration
Motivation
Obsessive Compulsive
Case Study – Will
Emotional Regulation
Communication
& Learning
Motivation
Ability
Sensory
Frustration
Anxiety / Fear
Program changes:
- More choice
- Motivation across day
- Focus on new
communication skills
- Sensory needs across day
- New skills to learn
School & home
Program
Behaviour
changes
Support for Will and his family
School:
- 1:1/1:2 program at school
- Program regularly reviewed
- Sibling integration
Home:
- ADHC case management and behaviour support
- Burnside EFS funding:
- Home Modifications
- Respite
- Sibling Support
- Holiday
- “Will” training night
- Equipment
- Long term regular respite
Will and his Wellbeing
Explorer
Anxiety
Sense of humour
Mood labiality
Independent
Mental
Health
Personality
Drawing
ADHD
Perseveration
Music
Visual
Theory of mind
Will
Autism
Engagement
support
Communication
Calendars / clocks
Hands on
Medical
Learning
Comprehension
Emotions
Seizures
Exercise
Processing time
More than Autism
70% of individuals with ASD also have an Intellectual Disability
30-50% of individuals with autism will also develop epilepsy
Individuals with ASD are 3 times more likely to develop mental
health concerns than non ASD individuals
Prevalence of mental health concern in ASD:
ASD
NT
Anxiety
42-55%
9
Depression
1-13%
5.4%
ADHD
28-44%
12.6%
Centre for Emotional Health – Macquarie University
Dissecting the Issues
Step 1:
- Data collection – observe, film, describe
Step 2:
- Function?
- Changes?
- Communication?
- Engaged?
- Other concerns?
Step 3:
- Break down behaviours into possible causes
- Find appropriate professionals
Step 4:
- Make a plan to work through the possibilities in a systematic way
Dissecting the Issues
Sense of humour
Anxiety
Likes / dislikes
Depression
Strengths
Mental
Health / Well
being
Personality
Perseverance
ADHD
Psychosis
RRB
Motivation
Theory of mind
Emotional
Regulation
Autism
Engagement
support
Individual
Communication
Competence
Positive experiences
Social
Pain
Medical
Learning
Comprehension
Seizures
Processing speed
Puberty
Other learning
concerns
Supporting Families
Individual needs require options…
- Education
- Respite
- Share Care
- Accommodation
www.giantsteps.net.au
Helen Appleton BSc, BA, GDS(Psych)
Family Support Therapist
Giant Steps Sydney
helen.appleton@giantsteps.net.au