Thread by @journalautism

New co-produced study defines #AutisticBurnout through experts with lived experience of #autistic burnout syndrome. Research by @JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW. @AutismCRC, @NationalAutism @Autism

doi.org/10.1177/136236…

A thread.

@JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW @AutismCRC @NationalAutism @Autism @JulianneHiggi16, late-diagnosed autistic peer-researcher with experience of burnout with @drsamarnold noted that #autisticburnout was discussed in social media but not in academic literature. The @3DN_UNSW @liz_pellicano team brainstormed survey, Delphi or interview approaches.

@JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW @AutismCRC @NationalAutism @Autism @JulianneHiggi16 identified the Grounded Delphi Method (GDM), enabling an emancipatory approach led by autistic adults positioned as experts by lived experience. Grounded theory with Delphi method, is useful for theory building and reaching consensus in under-researched areas.

@JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW @AutismCRC @NationalAutism @Autism We had 23 experts reach consensus on a preliminary definition of autistic burnout across three rounds of deliberations. Our autistic experts were mostly female (n=16), well educated (87%) and employed (73%) and varied in age (27 - 64 years).

@JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW @AutismCRC @NationalAutism @Autism All were formally diagnosed with #autism and were above cut-off on the AQ-28. Our experts agreed that “#autisticburnout is when I no longer have the energy reserves necessary to act Neurotypical”.

@JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW @AutismCRC @NationalAutism @Autism Energy was the core category from the round 1 analysis, describing things that both increased or depleted energy levels. The Onset category was inclusive of social interaction, misunderstanding, and sensory and cognitive overload leading to #autisticburnout.

@JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW @AutismCRC @NationalAutism @Autism They also agreed that the Impact of #autisticburnout included exhaustion from cognitive disruption, decreased functioning leading to withdrawal, and even suicide. Space and time alone were necessary for Recovery. “depression is the side effect with burnout being the cause”.

@JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW @AutismCRC @NationalAutism @Autism #AutisticBurnout is debilitating, onset linked to everyday stressors in an unaccommodating world. Research needs to validate definitions, important differences to @dora_raymaker et al (2020) findings. Clinicians need awareness, standard treatments may be inappropriate.

@JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @3DN_UNSW @AutismCRC @NationalAutism @Autism @dora_raymaker Thank you to @JulianneHiggi16 @drsamarnold @JanelleWeise @liz_pellicano @Trollor1 @3DN_UNSW for writing this thread. Here’s the paper link once again!

doi.org/10.1177/136236…