Managing Behaviours of Concern at Home

Dr Catherine Marraffa April 2015

• Ask parents • What are the behaviours of concern?

• Identify and clarify developmental status of child

• Target and fund interventions that work and are appropriate for the child in their environment

What are family goals

• Allard A, Fellowes A, Shilling V, et al. • Key health outcomes for children and

young people with neurodisability : qualitative research with young people and parents .

• BMJ Open 2014;4:e004611.doi:10.1136/bmjopen-2013-004611

ICF-CY (WHO)

• International Classification of Functioning, Disability and Health: Children and Youth Version

• 54 children and young people • 53 parents • Focus groups and interviews

Aim

• To identify the key health outcomes apart from morbidity and mortality by children young people and their families

Parents identified these

• Sleep• Behaviour • Safety

Parents and young people identified

• Communication (language, signs, symbols)• Mobility (moving around changing location)• Pain • Self-care• Temperament (behaviour, mood, anxiety,

concentration)

Parents and young people

• Interpersonal relationships• Community and social life • Emotional wellbeing• Gaining independence/future aspirations.

Best approach?

• Excellent care and input in the first three years of life

• A detailed developmental understanding of child’s skills

• A detailed understanding of parental ability, beliefs, stability and support structures

For all Children

• First three years of life are vital• Ample evidence over the last 60 years that

this is so.

• Donald Winnicott• Jack Shonkoff

Perry School Project

• Perry Preschool Project follow-up data at age 40 indicate a total benefit-cost ratio of 17:1

• (4:1 for participants and 13:1 for the public)

Perry Preschool Project

• Better primary and secondary school outcomes

• Better health• Lower levels of crime from 15- 40 years• Higher levels of income home ownership

and stable relationships

• SAFETY

• BEHAVIOUR

• SLEEP

• Search for missing 11 -year-old boy with autism, Luke Shambrook , escalates as it enters third day

• Luke's autism means he may not know he is lost and might not respond to rescuers, Sergeant Paul said.

Unhappy outcome

March 31, 2011• The family of a young autistic boy tragically

killed by a train say they are shocked and devastated by their loss.

• In a statement released this afternoon the family said six-year-old Kieran was a "beautiful boy".

Parent reported frequency of wandering behaviour

Reproduced from: Anderson C. Law JK. Daniels A. Rice C. Mandell DS. Hagopian L. Law PA. Occurrence and

family impact of elopement in children with autism spectrum disorders. 2012; Pediatrics. 130(5):870-7.

SAFETY

• Locks• Seat belts• Seat belt buckle covers• Fencing• Alarms

March 2015

• Use of cage for boy with autism at Canberra school prompts call for national education standard

• “Primary school had used a 2m by 2m structure made of pool fencing as a "withdrawal space" for a 10 -year-old boy”.

Severe Behavioural problems

• Smearing of faeces• Masturbation• Rage attacks • Self harm• Harm to others peers, siblings, animals

and carers

Behaviour management

• Are the parents ready?

BIST teams

• Now have a different name

• Under resourced

• Don’t stay involved

Sleep problems

• 75% of children with Down Syndrome in a community sample had sleep problems

• Team approach to determine the cause in each child as the treatment and solution will be different

Born 27 weeks

• 16 year old boy with moderate ID and autism suddenly developed an obsession with anything green

• Past history of severe behaviour problems • Biting, kicking, putting his hand through

plate glass window, breaking a hospital bed

GREEN THINGS

GREEN OBSESSION

Jumped out of the car window once while father was stopped at the lights

Ran across the road to the Service StationWhy? Green BP sign!Only option was for father never to drive

past a BP service station

Respite

• Very difficult • Needed active night staff

• However he ran away twice because ……

• Staff found he had gone at 8 pmFound by police at 4 am 15 km away in a shopping centre

• Solution -GPS tracking device but…..

The green one please

Multiple problems

• Child takes it off or refuses to wear it• No signal or turns it off• Not functioning for another reason

• Currently not recommended

Home safety

• LOCKS on doors, windows, gates, remote control doors

• Fire risk though if dead locks are used • (electronic locks triggered by fire alarm)• Alarms on the child’s bedroom door and

window to alert parent when they have left their room

• Simple and inexpensive are the clip and hook type above the child's head

• Disabled car parking space• Get child out on driver’s side• Use a seat belt lock (cost about $57) • Best prescribed by an Occupational

therapist

Role of medication

• One of multiple components in overall strategy to manage specific symptoms

• May assist with targeting underlying drivers for specific behaviours– e.g. Anxiety, obsessionality, impulsivity

• General principles – low dose, slow changes, careful monitoring for side effects, decisions made in partnership with family