Reading the Guideline

In preparing the updated Guideline, the GDG adopted several key approaches to writing about autism and presenting Recommendations that (a) reflect contemporary understanding of autism and language preferences within the autistic and autism communities, and (b) reduce the need for repetition and elaboration within and across Recommendations and Good Practice Points.

Talking about autism

The term ‘Autism Spectrum Disorder (ASD)’ is used only when directly referring to DSM-5-TR (DSM-5-TR; American Psychiatric Association, 2022) or ICD-11 (World Health Organization, 2019) diagnostic criteria. Elsewhere, the Guideline refers to autism. Identity-first language (i.e., autistic) is used when referring to individuals with an autism diagnosis. The Guideline acknowledges and respects the different preferences held by members of the autism and autistic communities [e.g., ‘with autism/ASD’, ‘on the (autism) spectrum’].

Talking about practitioners

The term ‘practitioner’ is used to refer to medical, nursing, and allied health practitioners who are identified in the Guideline as having a direct role in assessment for autism. It is acknowledged that the term ‘clinician’ is also commonly used in practice and can be considered synonymous with ‘practitioner’ when reading the Guideline.

Talking about individuals, families, and other people

The term ‘client’ is used to refer to the individual accessing assessment and/or diagnostic services and any family and family-like people who are directly involved in supporting them. Some individuals will participate in the process independently, whereas others will have other people involved out of personal choice and/or due to factors such as their age or communication/cognitive abilities (e.g., partners, family and family-like people, friends). The Guideline recognises that families come in many forms, and a family unit may include one or more parents, caregivers, partners, siblings, and/or biologically related and unrelated children and adults. The Guideline recognises that concepts of parents and families are culturally bound and equally valid. In presenting Recommendations and Good Practice Points, only the ‘client’ is referred to for brevity, consistency, and to avoid assumptions regarding the nature of support an individual may seek, need, and/or desire. The exception is where taking this approach would lead to ambiguity about the role of the family and/or significant others. The term ‘client’ should be read in the holistic sense, to include the individual and other people who are relevant.

Talking about neurodiversity-affirming practice

A neurodiversity perspective acknowledges 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 people as reflecting natural human variation. Neurodiversity-affirming practices seek to affirm each neurodivergent person’s identity. In the context of assessment for autism, this term refers to conducting an assessment, sharing findings, and providing recommendations for support that value and respect each person’s unique understanding of other people and the world around them, rather than viewing autism as a disorder or condition that should be ‘cured.’ Adopting a neurodiversity-affirming approach to practice in no way diminishes acknowledgement of the profound disability experienced by many autistic people, including those with co-occurring intellectual disability and/or complex communication needs. Rather, a neurodiversity-affirming approach values and respects each person for who they are, and focuses on identifying and addressing their support needs.

Accounting for different support needs

The Recommendations in the Guideline are relevant to clients with the full range of support needs, including individuals who experience profound disability. Adopting this approach helps to support consistency in key elements of clinical practice while maintaining the flexibility required to tailor the assessment and diagnostic process for individual clients. Indeed, the need to consider each client’s characteristics, functioning, and context, including strengths and support needs is explicit in the Recommendations. Practitioners are advised to consider the Good Practice Points that accompany each Recommendation, which highlight important considerations in relation to support needs, such as accommodating and supporting the use of augmentative and alternative communication (AAC) systems by people with complex communication needs.

Assent, consent, and involvement in decision-making

It is implicit that client consent will be obtained and respected in implementing all Recommendations and Good Practice Points. Ensuring that clients, and where appropriate family and support people due to the client’s age and/or capacity to provide informed consent, can make informed decisions about themselves and the assessment and diagnostic services they access is a core element of ethical practice. Therefore, each Recommendation and Good Practice Point must be considered and implemented in ways that respect each person’s preferences and have their consent. For example, Recommendations and Good Practice Points that refer to collecting and sharing information with other practitioners would only be implemented with informed consent, and in ways that are tailored to the client’s preferences.

Consistent with a human rights framework, the Guideline recommends that autistic people, including children and young people, are involved in decisions regarding the services they access and any supports they are referred to. How this occurs will vary between people and take into consideration factors such as how old they are, their cognitive and communication skills, and the nature of the decision being made. 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 individuals and their families.

When the client is a child, young person, or a person of any age with reduced capacity to provide consent, seeking the individual’s assent, and obtaining a parent or legal guardian’s consent, are critical and complementary processes that help ensure the individual’s rights are protected. This protection extends to circumstances in which the individual is unable to comprehend the decision being made due to their age, cognitive skills, and/or communication needs. In circumstances where the client cannot reasonably be expected to take on the full burden of decision-making, parents and legal guardians fulfil an essential role in weighing up the potential benefits and risks of a particular course of action to act in the individual’s best interests.

When working with children, there may be circumstances in which the preferences of a child and parent or legal guardian 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 assent, when the client is a child, young person, or a person of any age with reduced capacity to provide consent. Nor is the Guideline prescriptive in relation to when assent should be sought (e.g., how often), how much information should be provided to the individual, 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 individuals have capacity to assent and that they may communicate their wishes using a range of communication modes. The modes a client 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.

Clients 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 materials to indicate willingness to participate in an assessment activity; or rejecting, hiding, or destroying objects and materials to express a lack of assent. Furthermore, clients 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 assessment activity that a client is comfortable doing on one day (e.g., a child completing a play-based assessment in a clinic) may be distressing on another, due to their fluctuating sensory or other needs. Practitioners should continually ask themselves: “What evidence do I have that the client is assenting to the service 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 activity, at the same time consulting the client, to the extent possible, and parents or guardians regarding appropriate next steps, at all times maintaining their duty of care.

Recommendations and Good Practice Points

The Guideline is structured into a set of 66 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. Capitalisation (i.e., Recommendation/s) is used when referring to Recommendations in the Guideline, while lower case (i.e., recommendations) is used to when referring to recommendation/s in the general sense.

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 assessment and diagnostic process, so 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. The next update of the Guideline should take place within five years.