1. www.giantsteps.net.au Helen Appleton Family Support Therapist Giant Steps Sydney Dissecting the Challenges - looking at complex needs

2. 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

3. 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

4. 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

5. 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)

6. 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

7. 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 Wills Family

8. 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?

9. Case Study – Will Self injurious behaviourMedical / PainTeeth Bowel Head aches / migraines Puberty / hormones Physical behaviours towards others Communication Frustration Sensory Anxiety / Fear Seizures

10. Drop in Communication Rigid behaviours (meltdowns) Loss of skillsMotivation Ability Control Anxiety / Fear Case Study – Will Obsessive Compulsive Highly obsessive behaviours / routines

11. Absences, sudden changes in demeanour and movement MedicalNeurological activity Case Study – Will Mood labilityInternalPuberty Pain Emotional Regulation Anxiety

12. Case Study – Will Medical Teeth Bowel Head aches / migraines Puberty / hormones Ability Neurological activity Seizure activity Medication Behaviour Changes Developmental Paediatrician Paediatric Neurologist

13. Case Study – Will Mental Health Anxiety ADHD OCD? Medication trials Frustration Anxiety / Fear Motivation Obsessive Compulsive Behaviour Changes Developmental Paediatrician Paediatric Psychiatrist

14. 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

15. 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

16. 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

17. 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 ASDNT Anxiety42-55%9 Depression1-13%5.4% ADHD28-44%12.6%

18. 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

19. 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

20. Individual needs require options… -Education -Respite -Share Care -Accommodation Supporting Families

21. www.giantsteps.net.au Helen Appleton BSc, BA, GDS(Psych) Family Support Therapist Giant Steps Sydney helen.appleton@giantsteps.net.au