Self-harm and autism

[katievan]

Hi Everyone

I am doing research as part of my clinical psychology training with Staffordshire University. I'm really interested in speaking to parents of children who have a diagnosis of an autism spectrum disorder (ASD) and who self-harm by cutting themselves. There's lots of research out there about children with autism who hurt themselves by means like banging their head, but nothing at all about children with autism who cut themselves, or how this impacts on parents.

I'm looking to speak to parents of children between the ages of 12-18yrs. Children need to have a formal diagnosis of autism, and unfortunately can't have a diagnosed learning disability. Children don't have to be actively cutting now, but I can't speak to parents if their child's self harm occurred over a year ago.

Interviews would be by Skype, but they could be by telephone if that feels more comfortable for you. Interviews might typically take around an hour, but really they can be as long or as short as you'd like to make it. We can arrange a time to talk that suits you; daytime, evenings, or weekends.

This is all confidential, non-judgemental and ethically approved. If you'd like space to talk, vent or share your story then I'd love to hear from you. If you'd like to take part or have got any questions about this research, please feel free to email me privately at:  [email protected]

Many thanks, your help is much appreciated.


 

[Lorien]

Any reason to focus on talking to parents rather than autistic people themselves?

[Vermilion]

I wondered the same thing. SH is often kept secret from others especially with teenagers.

[katievan]

Hi
Thanks for your messages

There are a few reasons why this research focuses on parents rather than young people with autism.
A primary reason is that because there is so limited research in this area, this research is an exploratory and open study. Given the difficulties that some people with autism may have with social interaction and communication, it is potentially a big ask to discuss very personal issues with a stranger via Skype where the questions will be quite abstract and open to interpretation. This isn’t to say that someone with autism wouldn’t be able to complete an interview, but research cannot be conducted that puts participants in any discomfort. 
Another main reason is that the research requires open discussion about self-harm which may be very triggering for people currently cutting - interviewing young people would be distinctly less ethical due to the increased likelihood of causing them distress.
Also, as you mention, teenagers often don’t like to discuss their self harm, which means that at health appointments it is often the voice of parents that professionals hear, as parents advocate for their children. This means that the parents views are often the ones that professionals are working with, and this is especially true in many autism services.
Finally there is lots of evidence which suggests that parents will be strongly affected by their child self-harming, so it is important to speak with parents to find out what they go through themselves and whether there needs to be more support in services for parents as well as their children.
Hope that helps and do let me know if you have any thoughts

[icicle]

Isn't it your job to make the research accessible to people with Autism? Yes, they may experience discomfort, but they may also feel that taking part would still be worthwhile. Would you like other people to speak for you? Surely, the research might also put the parents in some discomfort? I suspect that you have gone for this option as it is easier and quicker for you to get ethical clearance for it and that the research will benefit you, as you will complete your qualification, but I cannot see it being of real benefit to people with Autism.

[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.