www.giantsteps.net.au

Helen AppletonFamily Support TherapistGiant Steps Sydney

Dissecting the Challenges - looking at complex needs

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

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.

Giant Steps - The Program

Understanding our StudentsEach 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

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

Will’s Family

Case Study – Will

Behaviours of concern:- Self injurious behaviour

- Physical behaviours towards others

- Drop in communication- Rigid behaviours - Highly obsessive behaviours / routines- Mood lability- Absconding

Safety & immediate

support

Function of Behaviour?

Communication

Changes?

Engaged?

Other concerns?

Case Study – Will

Self injurious behaviour Medical / Pain Teeth

Bowel

Head aches / migraines

Puberty / hormones

Physical behaviours towards others Communication

Frustration

Sensory

Anxiety / Fear

Seizures

Drop in Communication

Rigid behaviours (meltdowns)

Loss of skills Motivation

Ability

Control

Anxiety / Fear

Case Study – Will

Obsessive CompulsiveHighly obsessive behaviours / routines

Absences, sudden changes in demeanour and

movementMedical Neurological activity

Case Study – Will

Mood lability Internal Puberty

Pain

Emotional Regulation

Anxiety

Case Study – Will

MedicalTeeth

Bowel

Head aches / migraines

Puberty / hormones

Ability

Neurological activity

Seizure activity

Medication

Behaviour Changes

Developmental Paediatrician

Paediatric Neurologist

Case Study – Will

Mental Health

AnxietyADHDOCD?

Medicationtrials

Frustration

Anxiety / Fear

Motivation

Obsessive Compulsive

Behaviour Changes

Developmental Paediatrician

Paediatric Psychiatrist

Case Study – Will

Communication & Learning

Program changes:- More choice

- Motivation across day- Focus on new communication skills

- Sensory needs across day- New skills to learn

Behaviour changes

Emotional Regulation

Motivation

Ability

Sensory

Frustration

Anxiety / Fear

School & home Program

Support for Will and his familySchool:- 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

Will

Personality

Autism

Mental Health

Medical

Engagement support

Learning

Drawing

Explorer

Sense of humour

Communication

Theory of mind

Visual

Seizures

Independent

Comprehension

Calendars / clocks

Hands on

Exercise

Music

ADHD

Perseveration

Mood labiality

Anxiety

Emotions

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:

Centre for Emotional Health – Macquarie University

ASD NT

Anxiety 42-55% 9

Depression 1-13% 5.4%

ADHD 28-44% 12.6%

Dissecting the IssuesStep 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

Individual

Personality

Autism

Mental Health / Well

being

Medical

Engagement support

Learning

Perseverance

Sense of humour

Likes / dislikes

Communication

Social

Theory of mind

RRB

Seizures

Puberty

Pain

Strengths

Processing speed

Comprehension

Other learning concerns

Competence

Positive experiences

Emotional Regulation

Motivation

ADHD

Psychosis

Depression

Anxiety

Individual needs require options…- Education- Respite- Share Care- Accommodation

Supporting Families

www.giantsteps.net.au

Helen Appleton BSc, BA, GDS(Psych)Family Support TherapistGiant Steps Sydney

helen.appleton@giantsteps.net.au