Jade Davies, Kate Cooper, Estelle Killick, Evelyn Sam, Molly Healy, Grace Thompson, Will Mandy, Benjamin Redmayne, Laura Crane

https://doi.org/10.1002/aur.3105

A positive Autistic identity has a part in wellbeing. This systematic review of 20 papers explores this.

It shows that support and autism acceptance from family and friends contribute to a more positive Autistic identity.  Individual factors (e.g., age, gender) seem to have little impact on Autistic identity, meaning broad support might be needed, rather than support that targets specific sub-groups. Peer support and self-guided resources could be valuable ways of developing a positive Autistic identity. Most importantly, a positive Autistic identity is linked with improved mental health and well-being.

This review was requested by Ambitious about Autism, a UK charity, to help guide the development of post-diagnostic support that promotes positive identity development for Autistic youth.  Through journal clubs, two Autistic young people within the charity became familiar with research on Autistic identity. They were crucial to working out what is needed in future practice and research and were co-authors of this work.

The researchers looked through 3,388 papers and found 20 with quantitative data about Autistic identity.  They found 16 different aspects of Autistic identity that have been measured.  Most – but not all – were positive aspects of being Autistic, like autism acceptance, feeling solidarity with other Autistic people, or feeling pride in being Autistic.  A few were negative aspects, like internalized stigma or feelings of helplessness.  

The findings show that individual factors, like age and gender, had little, or no, impact on Autistic identity. Acceptance and support from others (e.g., friends and family), however, seemed to be key.  Having a positive Autistic identity was linked to higher self-esteem. However, having an Autistic social identity and feeling connected to the autism community were also linked to masking (i.e., hiding or concealing Autistic traits).

Several studies found a link between Autistic identity and mental health. Higher well-being scores were associated with positive Autistic identity.  On the other hand, internalised stigma was linked with poor well-being and distress, whilst a reduced acceptance of one’s own autism was linked with depression.

The authors suggest that developing a positive Autistic identity may start with self-directed support resources, like books, blogs, videos, or social media advocates. Then, peer groups may become a cornerstone of developing a robust Autistic identity which in turn might lead to better well-being. More funding might be directed at this goal.