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Self-harm and autism

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Lorien:
Perhaps part of your evaluation could address the above. I appreciate that your post and your research is not to anger or upset people. But there is an historic silencing of autistic people and over reliance on parental narrative as a substitute for engaging with the autistic community. To an extent this is the legacy of 'Autism Speaks' and other such organisations.

If you even briefly search around this you will see that there is a growing movement against being spoken for by others and continuing a parents first view of Autism.

I think it's great you are looking at self-harm and autism in a way that is not well researched. I spent hours scouring the Internet for information that didn't exist a few years ago. But I do think that despite your good intentions you've missed the ethical implications of allowing others to speak for individuals. In considering anti-oppressive practice I don't see how that stands up.

katievan:
Hi

Thanks for your messages. You're right, there is certainly a need to investigate this topic further from the perspective of those with autism so their voices may be heard. It is regrettable that there is so little research to justify the importance of hearing from them personally, considering that ethics panels consider individuals with these difficulties a 'vulnerable group'.  I sincerely hope that this is given due time and consideration possibly by larger research groups - there is certainly some truth in saying I can only achieve so much in a time limited qualification as an individual researcher. This is something I'll be sure to mention under the limitations of the report.
However, besides asking about parent's understanding of their children, this research very much also focuses on the impact that this has on parents (regrettably services in the UK struggle to meet demand and often turn away the people who are struggling with mental health themselves - there is therefore very few places where family members and others affected by an individual's mental health can access support). I hope that through this research we can identify what support parent's need, so this can indirectly help their children (naturally, all parents are doing a better job than they know!). Fortunately, I am aware that this is a topic of developing interest with other teams doing research in this area - fingers crossed that there will soon be more information readily available for people to access. Thanks again for your feedback :)

katievan:
Hello Everyone. Recruitment for this study has now closed. Huge thanks to everyone who has been in touch and given their time to speak to me, it's much appreciated.

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