Reading the Guideline
This Guideline was developed to ensure that autistic children and their families in Australia receive safe, effective, and desirable supports. The Guideline reflects the current knowledge in the area, weighs the benefits and harms identified, and provides Recommendations based on this information. These Recommendations are designed to provide practitioners who have the appropriate qualifications, experience, knowledge, and skills with an evidence-based framework through which they can support the learning, participation, and wellbeing of autistic children and their families.
Recommendations and Good Practice Points
The Guideline is structured into a set of 84 Consensus-Based Recommendations with associated Good Practice Points:
- Consensus-Based Recommendations are key elements of practice that must be followed for a practitioner to deliver evidence-based supports.
- Good Practice Points are linked to specific Recommendations, and are elements of practice that provide critical context to that 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.
The Recommendations and Good Practice Points may include examples for illustrative purposes. These examples are provided to further contextualise the information, and should not be interpreted as a complete list.
Talking about autism
The language used to talk about autism is important. During the Guideline development process, the GDG took a proactive approach to understanding community views on different language choices, and prioritising the use of language that is the most acceptable to the widest range of the community. Through an open consultation process embedded within the online community survey, it was determined that the use of identity-first language (e.g., ‘autistic children’) is preferred by the autistic community and acceptable to the broader community in the context of this Guideline. Based on this consultation, identity-first language is used in this Guideline. However, the Guideline also respects that no one term is preferred by all people. In this regard, the Guideline recommends that practitioners be familiar with, and respect, the individual language and terminology preferences of each individual child and family. The process undertaken to guide language use in this Guideline is described in the Administration and Technical Report.
Talking about parents, carers, and families
The Guideline recognises that families come in many forms, and a family unit may include one or more parents, siblings, and/or biologically related and unrelated children and adults. The Guideline recognises that conceptions of parents and families are culturally bound and equally valid. For clarity of writing, the Guideline refers to ‘parents’ when referring to people who have parenting responsibilities for a child, including guardian, kinship and foster carers. Recommendations that refer to ‘parents’ refers to these individuals specifically, whereas Recommendations and Good Practice Points referring to ‘family’ or ‘families’ refers to parents and also other people within a child’s family, including siblings, grandparents, aunts, uncles, cousins, and other people the child and parents themselves consider to be family.
Consistent with a human rights framework, the Guideline recommends that autistic children are involved in decisions regarding the supports they receive. How this occurs will be different for different children and take into consideration factors such as how old they are, their cognitive and communication skills, and the nature of the decision being made. These are the same considerations that are given to involving children in decision making in other health and education contexts. Practitioners are expected to draw on their clinical training, adhere to the ethical and professional practice requirements of their professional organisations, and abide by the laws and regulations governing their practice in upholding their professional obligations and duty of care to children and their families.
Seeking the child’s assent, and obtaining parental consent, are critical and complementary processes that help ensure the rights of the child and family are protected. This protection extends to circumstances in which the child is unable to comprehend the decision being made due to their age, cognitive skills, and/or communication needs. In circumstances where the child cannot not reasonably be expected to take on the full burden of decision making, parents and other legal guardians fulfil an essential role in weighing up the potential benefits and risks of a particular course of action and acting in the child’s best interests.
There may be circumstances in which the preferences of a child and parent are in conflict. Such conflicts should be resolved through a principled approach, given that the issues to consider will be unique to the particular circumstance. A key consideration is the balancing of principles honouring, respecting, and supporting the autonomy and self-determination of the child, while also maintaining duty of care. The child’s right to have their views sought, heard, and respected is enshrined in laws and conventions in Australia and internationally. Accordingly, the child’s views should be prioritised, provided doing so maintains the practitioner’s duty of care within the ethical, professional, legal, and regulatory context in which they are operating.
The Guideline is purposefully non-prescriptive in relation to addressing who should be involved in seeking the child’s assent, when this should occur, how much information should be provided to the child, what type of information should be provided, and how practitioners should respond when clear assent is not forthcoming or withdrawn. Again, a principled approach is required, within the ethical, professional, legal, and regulatory context in which the practitioner is operating. Of particular consideration here is the understanding that all children have the capacity to assent and that they may communicate their wishes using a range of communication modes. The modes children may use to express assent, or lack thereof, include but are not limited to movements, physical actions, facial expressions, expression of emotions, gestures, manual signs, vocalisations, words, drawing, writing, and use of augmentative and alternative communication modes.
Children may also express their assent, or lack thereof, by acting on the environment in ways that convey their assent, or lack thereof, such as actively retrieving preferred toys or materials to indicate willingness to participate in an activity; or rejecting, hiding, or destroying objects and materials to express a lack of assent. Furthermore, children may communicate in idiosyncratic ways (i.e., unique to them) or indicate their feelings about a particular interaction, activity, or environment through fluctuations and changes in their interest, engagement, or need for other interests and activities (e.g., an increase in sensory behaviours in response to increasing anxiety).
Practitioners should assume that assent may not be given and that even when provided, it may change or be withdrawn. For example, an activity a child finds enjoyable on one day may be distressing on another, due to a child’s fluctuating sensory or other needs. Practitioners should continually ask themselves: “What evidence do I have that the child is assenting to the supports I am providing?” Where the evidence for a clear answer to this question is lacking, changing, or ambiguous, practitioners should respond by ceasing or adjusting the support, at the same time consulting the child, to the extent possible, and parents regarding appropriate next steps, at all times maintaining their duty of care. Furthermore, practitioners should consider supporting children to have input into decisions about their own lives as a priority when working together. Supporting children to develop their capacity to make informed decisions about their own lives; to express these effectively and with confidence; to ensure those around them are listening and acting on their wishes; and to counter learned helplessness, compliance, and acquiescence, are essential goals of childhood for all children, and of paramount concern for autistic children who are the focus of this Guideline.
Making use of the Guideline and all supporting documents
To make the best use of the Guideline, it is essential that practitioners familiarise themselves with its entire content by reading all sections. The Recommendations relate to the entire clinical process, from overarching principles, through to goal setting, selecting and planning of supports, delivery of supports, monitoring and review of outcomes, and safeguarding of the wellbeing and rights of children and their families. Thus, it is strongly advised that the Recommendations are taken as a whole, rather than in isolation.
Updating the Guideline
Guidelines should be regularly updated to incorporate new research and clinical evidence, as well as the changing understandings and preferences of the autistic and autism communities. A review of the Guideline should take place within five years of the publication of this original version.