Table 3 Definitions of themes and sub-themes

Child is behind peers

Parent expresses concerns that there is a gap between child and their peers

Developmentally

Parent is concerned about child’s developmental delay

Academically

Parent is concerned child is academically behind peers

Socially

Parent is concerned about child’s communication and navigation of social interactions with peers

Emotionally

Parent feels child has more difficulty with emotional understanding than peers

Metabolism and eating patterns

Parent expresses concerns about child’s eating, weight gain or metabolism

No sub-themes

Support

Parent describes the level of support child has and journey to receiving this

Insufficient support available

Parent describes areas where child does not receive enough support

Parent has to fight to access support

Parent feels accessing support requires a battle

COVID-19 was a barrier to accessing support

Parent feels COVID was the cause of difficulties in accessing support

A 16p11.2 diagnosis can be a barrier to support

Parent feels 16p11.2 diagnosis prevents a deeper exploration of child’s needs

Child is well-supported

Parent describes areas where child receives a good amount of support