WANTED: Parents of children with autistic spectrum disorders (ASD) to participate in online research

[J.Howse]

I am a third year Psychology student at Swansea University. I have been interested in ASD for a long time and have family members with the condition. Seeing my parents look after a child with ASD has made me want to get involved with research to try to better understand ways to help support parents with the care of their child with ASD.

 

If you are a parent with a child diagnosed with an autistic spectrum disorder (including Autism, Asperger's Syndrome, Pervasive Developmental Disorder, Rett Syndrome or Childhood Disintergrative Disorder) that is 18 years old or under it would be greatly appreciated if you could spare a few minutes to complete this online questionnaire

 

To participate in this study go to: http://psy.swansea.ac.uk/questionnaires/700732/

 

If you have any queries you can email me (Jessie Howse) at: 700732@swansea.ac.uk

 

 

(I received permission to post from Lufty)

Edited July 10, 2013 by J.Howse

[J.Howse]

Thank you so much to everyone who has completed my study so far. I am in desperate need of a few more responses so if you have a few minutes spare i woiuld greatly appreciate your help!

[LisaKaz75]

I got so far and then the 2nd video clip would not play

[Shnoing]

Usually I don't do video clips. Do you have enough participants by now?

[J.Howse]

Hi LisaKaz75, i am sorry the second video didn't work for you! I haven't had similar feedback from anyone else and I've just checked and i cant see a problem with it. I don't know what to suggest. I really appreciate you trying to help me though! Thanks

 

Hi Shnoing, as yet i still don't have quite enough participants to show definite results. I'd really appreciate your help but I understand if you would prefer not to take part. Thanks anyway

[Shnoing]

Ok, I did it.

a.) embedding the video clips sometimes failed, so I had to watch them on youtube directly.

b.) my son does all of those things, although I have to say that I'd have handled at least two scenes better: in these cases the parents sent mixed signals (e.g. sarcasm) to their children - cannot do with autistics.

c.) I didn't feel distressed, it was more like I felt better because my son isn't the only one who does those things.

Edited August 9, 2013 by Shnoing

[J.Howse]

Hi Shnoing,

 

Thanks for participating! I am sorry you had trouble with some of the clips, i've checked and they work fine for me, strange! I am glad you didn't find the videos upsetting to watch. I think it is important that videos like this are seen to raise awareness of what children with ASD and their parents have to go through. Knowing that other parents have to deal with the same things you do must help. Thanks again.

 

 

 

On another note, please keep participating everyone! The more participants i have the more significant and useful my results will be!

Edited August 15, 2013 by J.Howse

[Shnoing]

Enough participants by now?

[J.Howse]

You can never have enough participants for this kind of research! The more responses i get, the more likely it will be that the results i get will be statistically significant (for example if you only have 10 participants, if one person's results don't follow the trend it will massively effect the final result, but if you have 100 participants if one or two people's responses don'f follow the trend it shouldn't effect the final result as much).

 

However i have given myself a target of 60 participants to work towards and im not quite there yet! Almost though, i just need a few more people who are willing to help

 

Thanks again Shnoing!

[Sally44]

I did the survey, but it was hard to choose how I felt about how the adults had responded. As a parent of an ASD child you are obviously going to react differently to how someone with no experience of ASD would.

 

I think that people not only judge the child on their behaviour, but also judge the child on the response of the adult. So depending on how they react to the behaviour, and how they handle it can make an 'outsider' decide that the child is spoilt, badly behaved etc. There is also a way that a parent can react that kind of gives out the single straight away that this child is "special needs". Some of your clips were like that. So as an 'outsider' I think I would cotton on quite quickly that whatever was happening involved a child with some kind of special needs. For some parents that is why they buy those caps/T-shirts that say 'autism' on it, so that they don't have to go through the explaining all the time.

 

For me the worst clip was the kid spitting and the woman laughing about it. That gave bad signals to the child, and would also give very bad signals to anyone experiencing the child's behaviour and the adults response to it. My son also went through a stage of spitting, and it was very very difficult to deal with, especially when out in shops etc. My son eventually went on to get a diagnosis of OCD and he has alot of avoidance behaviour around germs and contamination. At the time the spitting was his way of stopping him swallowing germs.

[Shnoing]

...

For me the worst clip was the kid spitting and the woman laughing about it. That gave bad signals to the child, ...

Yeah, that's what I meant with "mixed signals".

 

I think it makes a difference, too, whether the parent is on the spectrum or not.

[J.Howse]

Hi Sally44, thanks for participating!

 

The questions after the videos are hard to answer. You only see a short clip which means it is very hard to assess the parenting you've witnessed. As parents you know how difficult ASD can be, maybe you have even had to deal with similar circumstances from the videos, which again makes it even harder to decide how to answer the questions. The only thing i can say is that they are meant to be difficult to answer! If they were easy we might not learn as much from your responses.

 

Where it think the difficulty lies, and where i know my parents had a huge problem with my brother, is the fact that all children show tantrum behaviour etc. Which means that if you see a child having a tantrum in a supermarket, many people would just immediately assume its the parents fault and they cant control their own child. Which is horrible if you are a parent of a child with ASD because your child just gets labeled as "naughty" and you as a "bad parent" - which is not the case! This is why I'm doing more research into parents - better understanding and awareness needs to be raised so we can help parents.

 

And i agree with both of you, i didn't like that particular video for the exact same reasons!

 

Keep reading and participating everyone! Huge thanks to everyone who has done so already

[J.Howse]

Hi everyone, thanks to all of you who have participated so far. I will be closing the questionnaire on Friday the 18th of October so it would be great to get a few last responses from you before then Thanks!

[J.Howse]

One more week to go before I close my research. I only need two more participants to reach my target so if you could spare a bit of time to help me it would be much appreciated. Thanks to any future participants and to those who have already done so