“I like being autistic”: Assessing the benefit of autistic-led psychoeducation for autistic children
Background Despite receiving autism diagnoses in early life, autistic children are not routinely supported to understand these diagnoses post-diagnostically ([1][1]). Consequently, they typically grow-up lacking an accurate understanding of what it means to be autistic on both a collective and individual level ([2][2]). Without this foundational knowledge, children’s understanding of autism is garnered from how others perceive their autism, resulting in an understanding of autism, and of themselves, that is inherently negative ([3][3]). This lack of appreciation of their own individual needs, also denies them the important self-understanding afforded by the diagnosis in the first instance, alongside the opportunity to effectively self-advocate for themselves when these needs go unmet.
Aims Here we sought to directly assess the benefit of a pre-recorded, online autistic-led psychoeducation course about autism and the lived experience of being autistic (i.e., ‘NeuroBears’ ), for children’s understanding of autism and their autistic experiences, their feeling about being autistic, their communication with others about their autistic experiences, and their confidence to self-advocate for their needs.
Methods Using a concurrent embedded mixed-methods, repeated-measures design, autistic children (aged 8-14 years), completed a bespoke questionnaire exploring the above topics, both before and after completing NeuroBears at home with a nominated safe adult. A total of 63 children (mean age=10.57 years) completed sufficient content to be included in the analysis.
Results Significant benefit was observed across a range of areas, including a significant improvement in the children’s knowledge and understanding of being autistic and of their unique strengths and challenges, a significant rebalancing of how the children viewed being autistic, evidence of emerging positive autistic identities and a growing sense of belongingness, a significant change in the children’s abilities to communicate about being autistic, and evidence of strengthening self-advocacy skills.
Conclusion Learning about autism in a neutral and non-stigmatizing manner, and presented through the lens of autistic lived experience, conferred numerous benefits on autistic children’s self-understanding, emergent autistic identity, sense of belonging, and on their communication/self-advocacy skills. Future work is needed to establish the downstream benefits on wellbeing and quality of life.
### Competing Interest Statement
The authors have declared no competing interest.
### Funding Statement
This study did not receive any funding
### Author Declarations
I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.
Yes
The details of the IRB/oversight body that provided approval or exemption for the research described are given below:
The Faculty of Medical Sciences Research Ethics Committee of Newcastle University's Research Ethics Committee gave ethical approval for this work
I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.
Yes
I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).
Yes
I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.
Yes
All data produced in the present study are available upon reasonable request to the authors
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stimpunks·pubmed.ncbi.nlm.nih.gov·
