The journey to a child being diagnosed with ASD is sometimes smooth – parents’ concerns are listened to and a timely diagnosis is made in a manner that is supportive for the child and the family. But, unfortunately, for many children and parents this journey can be long, confusing and painful. An outline of a good pathway for diagnosis, and the skills and resources that would be needed to make it work, are described below.
Currently there is no lab test or scan that can identify a child with ASD. The diagnosis is based on getting information from parents and observing the developmental and behavioural features that indicate a pattern (or a syndrome) indicative of ASD as per the diagnostic criteria for ASD.
Challenges in identifying ASD:
It is worth acknowledging that while the features of ASD may sound straightforward to some, making a diagnosis, with a good degree of confidence, can be a complex and time consuming process. Some of the reasons that make it so are:
- Some of the behaviours/features indicative of ASD are also seen in children who are typically developing and those who have other form of developmental delay e.g. language impairment or intellectual disability.
- No single behaviour/feature is diagnostic of ASD
- Children with ASD are different from each other in their presentation, abilities and outcomes
- Like all children, those with ASD also grow and change with time and their presenting features change with age.
The stepwise pathways for identification of ASD and required competencies and facilities
STEP 1: Someone becomes concerned about the child’s development or behaviour.
REQUIRED: Widespread awareness of expected developmental progress and behaviour.
STEP 2: Someone notices- observes or listens to parental concerns – that the early signs of ASD are present. Parents should be advised to get a developmental assessment of the child.
REQUIRED: Awareness of the early signs of ASD among the carers, health workers, teachers, AND the awareness of what to do next – who to approach locally.
A screening tool for ASD may be used in this or the next step.
STEP 3: Initial assessment of the child. This is a look at the child’s general development (how is the child progressing in language, non-verbal, motor, social and behavioural aspects?), general health (whether or not there is any health condition or a sensory problem e.g. poor
hearing or vision affecting the child’s presentation) and any relevant social issues (a look at how the child is being cared for).
REQUIRED: trained health professionals, tools to assess development and health, a screening tool for autism and access to diagnostic assessment.
STEP 4: Diagnostic assessment: to do in depth assessment of the child:
- to identify the diagnosis of ASD as per the diagnostic criteria or an alternative explanation or differential diagnosis,
- to offer information to parents and carers about what autism means and how the child can be helped, and
- referral to a suitable management team/facility.
REQUIRED: Trained professionals using standardised assessment tools with information and other support resources to share with parents.