Parents in need for Asperger's Syndrome Study

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Hello, I'm Kenny J, a college student in Foothill College located in Palo Alto, CA.
My group and I are doing a study that will hopefully spread awareness, raise sensitivity, and gain new knowledge regarding Asperger's Syndrome, and effect it has on their caretakers.
We are mainly focusing on the effects it has on the parents, and explore the social and mental growth within the family.

I need parents who are willing to answer 10-15 interview questions for a study face to face via webcam, time spanning approximately 1 hour.

Those who are selected for the study will be asked to sign a Informed Consent document, and more information will be given then as well.

Please message me or post here if you are interested in participating in this study. I will send you more information as well as some starting essentials.

Thank you!

I have taken a class on it. To help me understand my son and daughter. Better.

I would be happy to help, post a link or pm me

I would also be glad to help. Please PM me

You may need to specify whether you mean parents who have or don't have AS themselves. A parent with AS is probably less able to deal with the demands made by a child or children with AS than an NT parent.

Although I'm not putting myself forward for your study, I would comment that as a adult with AS with two children who also have AS (ages 7 and 11) it has been and is unbelievably difficult. When your child meltsdown, there comes a point when it makes you meltdown too. The sheer stress of coping with constant defiance, obsessive behaviours, incessant questioning, meltdowns, sleep problems, phobias, anxiety and social problems etc. is beyond compare. I've come close to two breakdowns over both my children. I am on anti-anxiety medication because of dealing with parenthood to children with such challenges.

Added to that, trying to socialise your children in the face of your own social difficulties is extremely hard. Also, having one child who has become more placid and one who is having constant meltdowns and doesn't want to go out due to sensory issues and crowds of people, means you are unable to make both children happy because if you give in to the one with the more challenging behaviour the other one loses out and if you decide to go out in the face of the tantrumy child's resistance you will invariably have to deal with public meltdowns, which are incredibly stressful.

Also, having executive dysfunction means the role of parent and housekeeper is ultra challenging compared to an NT parent.

There are probably loads more aspects but those give you some idea.

whirlingmind's problems are in no way typical of an ASD parent raising an ASD child. My husband and I would both be happy to participate in your study. He's NT, and I'm HFA. The kids are diagnosed AS and HFA. Just PM me.

Thank you for the interest already!
To specify, the study is geared towards non-AS parents who are raising kids with AS, but we welcome all parents for this study.

There are some demographics questions that needs to be answered first, please post here or PM me if you are interested!
I have already PM'd the people who posted in this thread with interest, please let me know if there's anything else I can help with.

-Kenny

I would have liked to participate, but I don't have a webcam and wouldn't feel comfortable speaking on one anyway. My experience is similar to whirlingmind's, athough I only have one child. But, we seem to be coming out of the end of a very long tunnel and I'm trying to adjust to this new 'easy' life.

I'd be happy to participate. I have a nine year old son with ASD and two daughters who are NT.

Why the need for webcam? I'm really uncomfortable with the privacy issues raised by how you're doing this. Almost all the other studies I have participated in have either been in a hospital setting where they started with our medical records, or we've been assured our responses would remain anonymous. I'm doubly uncomfortable that you aren't providing contact information in the thread or in a link to your institution, but are asking for potential participants to contact you offline.

I won't be participating, but for my own peace of mind about a community I care about, could you post some credentials to prove that you are in fact associated with a legitimate institution and that you have some methodology for protecting the privacy of those who choose to participate?

There are an awful lot of people, sometimes even well-meaning people, who take advantage of parents and people on the spectrum - I would hate to find out you are one of them.

I am an AS parent with one diagnosed AS child and another that displays AS traits. My wife is NT. We are a very close family. I can say that I find having AS myself is a great benefit in dealing with my children in that we relate with each other in great ways. Having AS myself allows me to better understand the needs of my children. As this may not be the case with other AS parents of AS children, it is however my experience.

The webcam is just for study purposes. If anyone want to participate, and feels uncomfortable speaking in front of a camera, we can do voice chats. We do need some sort of verbal conversation so that it can be used for analysis later on.

Sorry for the inconvenience!

And to respond to the credentials question, I will be sending out my credentials per request in the e-mail and I have contacted individuals who are interested in participating.

Thank you for your help!

Sorry for the spam, but those who agreed to participate are not replying to the messages/emails I've sent so I'm still looking for participants! Thanks in advance

They're probably not replying because you ask offensive questions that assume AS children are incapable of feeling emotions.

Just a heads up, folks, this study raises some red flags with me as having an anti-AS bias. I won't be participating, and I'm guessing that's why others aren't either.

I didn't find the questions offensive. However, I am concerned about the study being properly supervised and meeting APA's ethical standards of research and informed consent.

"I appreciate your wanting to do a study about AS. However, I feel uncomfortable providing you with any personal information about myself and my child without further information. Your informed consent was incomplete by APA's ethical informed consent standards. I will not be able to participate further without having full disclosed information as directed by ethical standards. Please see the following: APA Ethical Standards - Informed Consent"