Appendix A: Glossary

Academic skills (as a focus of supports)

The abilities, strategies, and habits that help people learn in an academic setting, such as school.

Acceptability

The extent to which the child and/or family perceives a particular support to be appropriate and meet their needs.

Adaptive behaviour

Skills that help people to function in their daily lives, this includes self-care and daily living skills, skills for communicating and relating to others in everyday settings.

Activity

The engagement in or performance of a task or action.

Adverse effect

An adverse event for which the causal relation between the support and the event is at least a reasonable possibility.

Agent

The person who is delivering the support to the child.

Amount

The quantum of support measured in units of time (e.g., minutes, hours).

Appraisal of Guidelines Research and Evaluation (AGREE-II)

AGREE II is an internationally accepted framework designed to guide the development, support the reporting, and assess the quality of practice guidelines.

Assent

The expressed approval of a person to participate in an activity, where that person is not able to give legal consent to participate. In Australia, consent for children (under 18 years of age) to receive supports is generally provided by parents.

Augmentative and alternative communication

Communication by means other than talking, to support both comprehension (understanding) and expression. ‘Augmentative’ means to add to someone’s speech, and ‘alternative’ means to be used instead of speech’.

Autism Spectrum Disorder

Autism Spectrum Disorder (often referred to as autism or ASD) is the collective term for a group of neurodevelopmental conditions characterised by persistent difficulties in social-communication and interaction, and by restricted, repetitive patterns of behaviour, interests, or activities and/or sensory behaviours. The behavioural features that characterise autism are often present before 3 years of age, but may not become apparent until the school years or later in life. While these features can vary widely in nature and level between individuals, and in the same individual over time, there is evidence that autistic behaviours endure into adult life, though the impacts may change across the lifespan. A range of developmental, mental, and physical health conditions regularly co-occur with autism, including attention deficit hyperactivity disorder, intellectual disability, epilepsy, gastrointestinal issues, sleep disorders, language disorders, motor difficulties, and mental health problems. These co-occurring conditions, in conjunction with the core autism characteristics, can create significant barriers to a person’s ability to function independently in his or her environment, with longer-term implications for educational and vocational attainment and wellbeing.

Autism community

The community of parents and family members of autistic people, along with practitioners and other community members who seek to support autistic people.

Autistic community

The community of autistic people.

Autism CRC

A collaborative research organisation that is focused on autism across the lifespan, and is an independent national source of evidence for best practice. The Autism CRC funded the development of this Guideline. Visit Autism CRC’s website at www.autismcrc.com.au

Australian Health Practitioner Regulation Agency (AHPRA)

AHPRA is the Australian Government agency that is responsible for the implementation of the National Registration and Accreditation Scheme across Australia. AHPRA is responsible for the regulation of 16 health professions across Australia, including Aboriginal and Torres Strait Islander Health Practitioners, Medical Practitioners, Occupational Therapists, Physiotherapists and Psychologists. AHPRA’s website is: www.ahpra.gov.au

Biological-based therapies

Any type of support/therapy that seeks to directly change biological processes or functions, including (but not limited to) medications, dietary supports, exercise, chiropractic, massage, acupuncture, reflexology, kinesiology, shock therapy, neurofeedback, transcranial magnetic stimulation, or hyperbaric oxygen therapy interventions.

Clinical mentoring

A reciprocal professional relationship whereby a practitioner with knowledge and experience assists with the learning and development of another. A clinical mentoring relationship is not typically related to ensuring accountability within a given place of employment.

Clinical supervision

A professional, and often contractual, relationship in which a typically more experienced supervisor provides guidance to a practitioner on aspects of ethical and professional practice.

Cognitive development (as a focus of supports)

The process by which children acquire, organise and learn to use knowledge.

Consensus-Based Recommendation

Key elements of practice that must be followed for a practitioner to deliver evidence-based supports.

Consent

A person’s agreement, based on adequate knowledge and understanding of relevant material, to participate in an activity.

Communication (as a focus of supports)

An exchange of information, ideas, and feelings between two or more people, where they create and share meaning.

Community consultation

Refers to research activities undertaken by the Guideline Development Group to gather evidence form the autistic and autism communities to inform the development of the Guideline.

Daily activities (as a focus of supports)

The activities that people undertake on a daily basis and help everyday functioning in life, such as self care (sleeping, toileting, personal grooming and eating).

Developmental skills

Skills that children gain over time, which are learnt and then combined to develop more complex tasks.

Draft Recommendations Working Group (DRWG)

The six members of the Guideline Development Group who led the analysis of the information collected through the research and community consultation activities to develop recommendations and make Evidence to Decision judgments. The group members were Sarah Pillar, Rhylee Sulek, David Trembath, Kandice Varcin, Hannah Waddington, and Andrew Whitehouse.

Duration

The length of time that a given amount of support is received, such as a given number of months.

Effectiveness

The ability of a support to lead to the desired beneficial effect.

Evidence-based supports

Supports that are based on the best available evidence from research, evidence from clinical practice, and the preferences and unique context of each child and family.

Evidence to Decision (EtD) framework

A research method that is part of the GRADE framework that guides Guideline developers to use evidence in a structured and transparent way to inform decisions in the context of Guideline Recommendations.

Family

The child’s parents, siblings, and any extended family, including grandparents, aunts, uncles, and cousins.

Family-like

People who are not relatives of the child and family, but play a significant personal role in supporting the child and family.

Feasibility

The extent to which a support is able to be delivered by a practitioner in a particular context.

Format

The delivery set up in terms of the individuals receiving the support, such as delivery to an individual child (also called one-on-one delivery), or delivery to a group of children (also called group delivery).

Gender identity

An individual’s perception and experience of their own gender. This may or may not correspond to their physiology or sex assigned at birth.

Generalisation

The ability to perform skills learnt in one circumstance in other settings and activities, and with other people.

Good Practice Points

Elements of practice that provide critical context to a given Recommendation, such as how a Recommendation should be operationalised in clinical practice, or how it is applied to a specific population or under specific circumstances.

Grading of Recommendations Assessment, Development and Evaluation (GRADE)

GRADE is an internationally recognised research framework for assessing the certainty of evidence and strength of clinical practice recommendations.

Guideline Development Group (GDG)

The 15 member group that led the research and community consultation activities upon which this guideline is based. The group included autistic adults; parents and other family members of autistic children, including children and young adults with complex needs; people with expertise in working alongside Aboriginal and Torres Strait Islander Peoples and communities; people with expertise in ethics and research integrity; practitioners with experience in government and non-government sectors; and researchers with expertise in the guideline development process, including community consultation. The group members were: Gary Allen, Katharine Annear, Valsamma Eapen, Jessica Feary, Emma Goodall, Sarah Pillar, Teresa Pilbeam, Felicity Rose, Nancy Sadka, Natalie Silove, Rhylee Sulek, David Trembath (Co-chair), Kandice Varcin, Hannah Waddington, and Andrew Whitehouse (Co-chair).

Intensity

The amount of support (measured in units of time) provided in a particular time period (e.g., hours per week).

International Classification of Functioning, Disability and Health (ICF)

Commonly known as the ICF, this framework, published by the World Health Organisation, presents a biopsychosocial model for conceptualising, describing, and addressing disability in a way that considers individual, contextual, and environmental factors. The ICF website is: www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health

Key worker model

A group of professionals from different disciplines who meet regularly and that nominates one member as the primary service provider or ‘key worker’. The key worker acts as the primary practitioner for the child and family, and the single point of contact.

Learning

Acquiring knowledge and skills.

Meta-analysis/es

A statistical analysis that combines data from different studies focused on the same research question.

Mode

The medium through which a support is delivered, such as through in person delivery and through telepractice delivery.

Monitoring

The ongoing process of collecting information to ensure that supports are being delivered in a safe, effective, and desirable way.

Motor development (as a focus of supports)

The acquisition of skills that enable a child to move around and manipulate the environment around them. This includes gross motor skills (involving larger muscle movement, such as sitting, crawling, and walking) and fine motor skills (involving smaller muscle movement, such as grasping and drawing).

Multidisciplinary

A group of professionals from different disciplines working with a child and family, either independently or as a team.

Narrative synthesis/es

An approach to combine the results from different studies focused on the same research question, which relies primarily on words to summarise and explain the findings.

National Alliance of Self Regulating Health Professions (NASRHP)

NASRHP is a national organisation representing self-regulating health professions in Australia. NASRHP provides a quality framework for self-regulating professions, facilitating national consistency in quality and ethical practice.

National Disability Insurance Scheme (NDIS)

The NDIS is an Australian social security system that provides funding to people with disability, their families and carers. The NDIS is jointly governed by the Australian and state and territory governments.

National Health and Medical Research Council (NHMRC)

The NHMRC is the main statutory authority of the Australian Government responsible for medical research. The NHMRC provides guidelines that describes the best practice approach for developing practice guidelines in Australia (called ‘Guidelines for Guidelines).

Neurodiversity

The perspective that people experience and interact with the world in different ways. Inherent in this view is that there is no one ‘normal’ way of thinking, learning, and behaving, and therefore differences in behaviours should not be seen as ‘deficits’. In the context of autism, a neurodiversity perspective views brain-based and behavioural differences observed in autistic children as reflecting natural human variation.

Neurodiversity-affirming

Practices that seek to affirm the child’s neurodivergent identity. In the context of autism, this term refers to providing supports that embrace each child’s unique understanding of other people and the world around them, without seeking to ‘cure’ autism.

Non-pharmacological

Any type of support that is not primarily based on medication.

Parents

Any individual with parenting or caretaker responsibilities for a child, including guardian, kinship, and foster carers.

Participation

The involvement in life situations that a person desires and in a way that they agree to.

Pharmacological supports/therapies

Any type of support that uses medication.

Practitioners

People who are paid to provide support services to children and families.

Protective behaviours

Behaviours that enable a child to recognise situations in which their personal space and sense of safety may be compromised, and to express and advocate for their needs, preferences, and desires.

Public consultation

Refers to the process whereby the Guideline Development Group released the Draft Guideline, gathered feedback from the autistic and autism communities, and used this feedback to refine the Guideline.

Quality of life

An individual’s perception of their own position in life, particularly in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.

Reference Group

A group of representatives from key stakeholder organisations in Australia, who supported the community consultation process and who provided input to the guideline development process at key stages. The Reference Group comprised representatives from organisations that play a critical role in supporting aspects of children’s health, development, education, participation, and wellbeing, and/or supporting parents and families in raising autistic children; that represent Aboriginal and Torres Strait Islander Peoples, and represent Culturally and Linguistically Diverse communities; as well as from the key Government agency, the National Disability Insurance Agency.

Research synthesis

A research project that combines the results from different studies focused on the same research question, and provides an overarching summary of those studies.

Restrictive practices

Any action that has the effect of restricting the rights or freedom of movement of a person with disability. In Australia, restrictive practices are subject to regulation. Restrictive practices include:

• Seclusion – sole confinement of a person with disability in a room or a physical space at any hour of the day or night where voluntary exit is prevented, or not facilitated, or it is implied that voluntary exit is not permitted.
• Chemical restraint – the use of medication or chemical substance for the primary purpose of influencing a person’s behaviour (not including the use of medication prescribed by a medical practitioner for the treatment of, or to enable treatment of, a diagnosed mental disorder, a physical illness or a physical condition).
• Mechanical restraint – the use of a device to prevent, restrict, or subdue a person’s movement for the primary purpose of influencing a person’s behaviour but does not include the use of devices for therapeutic or non-behavioural purposes.
• Physical restraint – the use or action of physical force to prevent, restrict or subdue movement of a person’s body, or part of their body, for the primary purpose of influencing their behaviour (not including the use of a hands-on technique in a reflexive way to guide or redirect a person away from potential harm/injury).
• Environmental restraint – a restraint restricts a person’s free access to all parts of their environment, including items or activities.

Reviewing

A periodic assessment of all information collected during monitoring, which enables the child, family and practitioner to reflect on the overall experience of accessing supports, including whether the current goals remain relevant and meaningful, and whether the current supports are safe, effective, and desirable.

Sensory experiences (as a focus of supports)

Interpreting input from the five senses (hearing, sight, taste, touch, smell), along with other sensory information such as proprioception (the awareness of body and limbs in space) and interoceptive (the perception of sensations from inside the body).

Service

Any paid activity performed by a practitioner in the process of supporting children and families. This includes goal-setting, selecting supports, support delivery, and support monitoring.

Service provider

An organisation that provides services to autistic children and their families. These organisations may have a sole practitioner or many practitioners.

Service system

The arrangement of organisations, people, institutions, and resources that provide services to people for a shared intent (e.g., education service system, health service system, disability service system).

Sexual development

The process(es) of interacting physical, cognitive, emotional, and social changes that underlie sexual maturation.

Social-emotional development (as a focus of supports)

The child’s experience, expression and management of emotions, and the ability to build healthy relationships with others.

Supports

Any paid activity performed by a practitioner that seeks to improve a person’s experience of the world, either through helping the child acquire skills that promote their learning, participation and wellbeing, empowering parents to support and advocate for their child and promote their own and their family’s wellbeing, and/or create safe and accessible environments that support learning, participation, and child and family wellbeing.

The term that encompasses both what are historically referred to as ‘therapies’ and ‘supports’:

Therapies – services that focus on supporting the child to acquire or enhance functional skills aimed at developing and maintaining their learning, participation, and wellbeing in the community.

Supports – services that focus on adjustments, modifications and enhancements to the environment aimed at developing and maintaining their learning, participation, and wellbeing in the community.

While supports for autistic individuals vary, they share a universal goal of minimising the impact of developmental challenges and co-occurring conditions on functional abilities, participation, and quality of life, and maximising long-term independence and autonomy.

Telepractice

The use of telecommunications (including videoconference and internet technology) to connect a practitioner with a child and family at a distance for the purpose of providing supports and/or other services.

Transdisciplinary

The delivery of a range of supports by a single practitioner, where those supports transcend professional boundaries, provided the practitioner is appropriately qualified and has the knowledge, skills, experience, and supervision to do so in ways that are safe, effective, desirable, and lawful.

Universal design

The design or composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people regardless of age, disability, and other factors.

Wellbeing

Positive and sustainable characteristics, such as being comfortable, healthy, and happy, which help an individual thrive and flourish.