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Lbicke1
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06 Jan 2007, 11:11 pm

My name is Lisa and I am currently working on a thesis attempting to increase the research done on Autism and its effects on parents and guardians. I am asking for participants to complete this survey which will only take about 20 minutes in order for me to gain as much information as I possibly can.

http://www.surveymonkey.com/s.asp?u=905523099479

Purpose of the Study:
This study is designed to evaluate the stress levels of parents and/or guardians caring for one or more children with autism spectrum disorder (ASD). The stress levels will be assessed using a survey, allowing us to better understand what factors in caring for a child with ASD causes stress.

Procedures:
Participants will be asked to complete a survey about the severity of the child’s ASD and their own stress levels while caring for the child.

Risks/Discomfort:
There are no known risks associated with participation in this study. Should the test become distressing to you, you have the option to not continue with the completion of the survey.

Benefits:
While there is no direct benefit to you, it is hoped that the results of this study will have beneficial effects to identify the factors that affect stress levels in caring for a child with ASD. We also hope the results of this study will contribute to the existing research on how caring for a child with ASD relates to stress levels.

Alternatives to Participation:
Participation in this study is voluntary. You are free to withdraw or discontinue participation at any time.



KimJ
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06 Jan 2007, 11:53 pm

Are you an employee of a company or school working on a thesis to underwrite a grant? Or are you a student writing an academic thesis for your Master's Degree? Or are you an undergrad writing a paper? Curious because "attempting to increase the research done on Autism" is vague and not very academic sounding.
The language in that survey needs a lot of fine-tuning, if you are looking for appropriate responses. I really can't answer 2/3 of the questions in it. I don't even know where to start. I guess I'd suggest reading more on autistic traits, ASD in general to learn how to ask questions. For instance, you mention grades of severity with examples of traits. The problem with this is that with a spectrum disorder, you have different traits amongst the different grades of so-called severity.
You can't ask cookie-cutter questions.



katrine
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07 Jan 2007, 4:04 pm

I have to agree with Kim J - who I thought was being pretty harsh before I actually saw the survey. The questions seem like a clinical assesment stolen from a book - coupled with a personality test from Elle.
Also, they are not aimed at high functioning autism/Aspergers, so this might not be the right forum. The survey comes across unprofessional and even down right insulting - which is a great petty cause hell knows we parents are stressed out sometimes!



KimJ
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07 Jan 2007, 4:22 pm

There are some good surveys out there, I take them. I think it's important for the truly curious and helpful to know what it's like to be a parent of a special needs kid. Frankly, I'm being treated for depression, its origins pre-dating being a parent. Left untreated, I'd be unable to answer those questions in a meaningful way. Today I'm feeling great, last month I wanted to kill myself, 3 years ago I was on the verge of abandoning my husband and son, 12 years ago I was drinking so I could sleep at night.

My son is "classic" autism and has many traits in various "severities". Many of his skills vary within subsets. For instance, he has "age-appropriate" speech and can easily carry on a conversation. However, his receptive language (what he understands) is very delayed and often repeats jargon that many people mistake for being spontaneous. He can't understand jokes at all but he'll tell them.
He's all over the place with sensory issues too.
Anyways, I'm not a naysayer with surveys in general.



pooftis
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09 Jan 2007, 5:21 pm

This test was fairly offensive to me. There are no questions that can be answered as “does significantly above what a normal child would do” first of all, and secondly all the questions make having an autistic child sound like a prison sentence coupled with horrible depression. I suggest you add questions to paint an accurate picture of life with a little one who has this, only asking questions about how “bad” the situation is, strikes me as completely inaccurate and misleading. No wonder clueless NT’s want to “cure” it.


_________________
I hate hearing, "you don't seem autistic/aspie". I have a nagging suspicion most people have no idea what autistic or aspie "seem" like in the first place...