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smoresun

Looking for parents to participate in research on personal growth and stress

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Hi,

 

I'm a student in the MSc Abnormal and Clinical program at Swansea University in Wales. For my dissertation, I am investigating the effect that receiving a child’s autism diagnosis can have on parents by looking at both personal growth and stress symptoms that occur following the diagnosis. I hope to identify the characteristics of the parents that lead to these experiences. Understanding how parents are affected is important as a parent’s mental health is often overlooked, yet can have a large impact on their family and lives.

 

I am looking for mothers and fathers who have at least one child diagnosed with an autism spectrum disorder and would be willing to complete an anonymous 20-minute online survey.

 

Because of the forums rules on posting external links, I ask you to please email me at 716144@swansea.ac.uk if you would be interested in participating or have any questions about the research. Within the link I would send to you, there is an information sheet, consent form, the questionnaire, and a debrief form that further elaborates on the study.

 

I would be happy to provide anyone who participates a copy of the results at the end of the study.

 

Thanks for your time and help.

 

Kind regards,
Shannon

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More infos about yourself, please.

And it would be ok to provide that survey link via PM here. I just don't wanna use my e-mail address for that purpose.

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No worries, I would be skeptical about giving out my info as well. I just didn't want to break the forum rules. Sorry about that!

 

Here is the link to the survey: http://psy.swansea.ac.uk/questionnaires/716144/

Any help is greatly appreciated.

 

And here is a bit more about me:

I'm originally from Canada but am completing a MSc in Abnormal and Clinical Psychology in Swansea, Wales this year. I have been working with kids and teenagers on the autism spectrum in a variety roles for the last 5 years (nanny, ABA therapist, outdoor educator, integration aide at a school, holiday programmer, and home support worker) and have loved every minute of it. I would love to develop more outdoor programing for individuals on the autism spectrum in the future. It's amazing watching kids flourish outside of the city environment.

 

I really love the kids I work with and being able to help them grow and express themselves as individuals. In the last few years, I've discovered the online autism community and all the amazing blogs and conversations going on. It has really expanded my understanding of autism and it has had a huge effect on the way I approach the individuals I work with.

 

Thanks for your time and participation. If you have anymore questions, please don't hesitate to ask.

 

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I would have expected some questions about whether the parent(s) is/are on the spectrum his/her/themselves.

 

For example, I did the Wired AQ test in 2002 (33 points) and thought no more of it. My son was born in 2003, and got his dx in 2006. My own dx followed in 2007, followed by a year-long phase where I analyzed my own past under that new perspective, and I was not surprised to find many parallels between us both. I'd assume that a NT parent would act and feel totally different ...

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Just one point I'd make. Maybe it was just me, but I did feel a little confused by the language of the questions sometimes. You were asking about the affects of a child's diagnosis on a parent and I sometimes wasn't sure if you were referring to the actual stress of the day the diagnosis was given or to the general fact that you have a child with autism, does that make sense? i.e. you were asking if things reminded the parent of 'it', and I wasn't sure if you meant remembering the day 15 years ago when you were told of the diagnosis or if the 'it' referred to the fact of the autism itself. I'm sure I'm not making myself clear, but I know what I mean! :)

 

~ Mel ~

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Yeah, about that: is the point of reference the knowledge about the dx, or is it the "weird" behaviour, even before someone put a label on it (now with hindsight 20/20, we know what it was).

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Thanks for filling out the questionnaire and for the feedback!

 

I'm sorry the wording was a bit confusing. I will take a look at it to see if there is a way I can make it more clear.

 

Shnoing, that's a really interesting point about asking about the parent's own diagnosis. I have to admit, I hadn't thought of asking about that, but for sure for some people it would make a huge different in how they handle their child's diagnosis. Thanks for the insight :)

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I pressed the link, put in my email address and it keeps coming back that I've left a field blank, it won't let me go into the survey.

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Mmm, I started it and then stopped because, for me, it is not my child's diagnosis but the effect of it - the lies, deceits and battles with organisations who consistently fail him that is traumatic.

 

I didn't want to input scores which may present a false picture.

 

For me, the trauma of autism comes from my dealings with the local authority who fought to try and ensure my son did not get the help he needs and their NHS partners in crime.

 

Taking on two massive public bodies to fight for your child's basic needs carries an enormous personal and financial cost and I have had to two it three times in two years. This is what traumatises me and many parents like me.

 

My son is who he is. The system is a disgrace and ruins lives and marriages.

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Sorry I'm so slow to reply. I've been away and then my computer was away getting fixed.

 

JeanneA: Sorry that you are had problems with getting in to the survey.. It's the first that I've heard of someone not being able to go to the next page, especially if it's an email that you are using. If you are still interested in completing the survey, you could use something other than your email as an id number. Use something unique like a random combination of letters and numbers.

 

Babnye1: The survey is looking at the stress that comes with the autism diagnosis. It doesn't necessarily have to do with being able to cope with your child but from the impact of autism in your life, which includes the interactions with organizations and professionals. This is stress that you would not have had to encounter otherwise. Your participation would not create a false picture, but would be very much appreciated.

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Thanks so much to everyone who participated in my study. I've submitted my dissertation and my supervisor wants to publish the study. So a HUGE thanks to you all.

In order to publish, we'd like to have a larger sample so I am looking for more participants. If you haven't already participate, please consider it! This research's aim is to help understand parent's experiences, negative and positive, and the personal effect that caring for a child with autism can have on a parent.

Thanks again!

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...

In order to publish, we'd like to have a larger sample so I am looking for more participants. If you haven't already participate, please consider it! ...

 

bump!

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