Partcipated in ASD research (long)

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Registered: 01-19-2005
Partcipated in ASD research (long)
6
Thu, 09-22-2005 - 12:57pm

Have any of you participated in ASD research studies? We feel research is so important, and my husband is a college professor, so we decided to participate in a study. It left me feeling so sad, and I am not sure why. I am glad we are participating, I think the research topic is important, but I guess it's another of those occasions that brought home to me how different Eric is from other kids, even when he is doing well. The experience showed me hands down that his "wiring" is unique. I am feeling way more tender and indulgent towards him now.

Here is the gist of the study. I'm sorry this is long, so bear with me. But I thought you all might find it of interest. They are studying the development of visual and auditory processing in infants and toddlers to see if there are differences between autistic children and typical children. We will receive an individual assessment of Eric and a copy of the paper when it is done. Here is what they did:

Eric was in a darkened booth sitting in front of 3 tv screens. The observers were behind where the tvs screens were and Eric could not see them. First segment: on the middle tv was what looked kind of like a windows screen saver, colorful geometric shapes bouncing around the screen. On another screen was a grandmotherly looking lady saying "you are such a pretty baby, your parents must be so happy," in soft soothing tones like you would say to a baby. On the other screen was another grandmotherly lady mouthing the same words, no sound. They would switch and the formerly quiet lady would say the words and the other mouthed them etc.

Next segment: same geometric shapes in middle. This time women neither old nor young saying familiar nursery rhymes. Same deal, one talked the other mouthed, they switched them.

Next segment: same geometic shapes in middle. This time on both screens no people but what looked like nails and screws tied together that where being banged on the table, like you would jangle keys.

Final segment: same shapes in the middle. On other screens young women with enthusiastic, heightened emotion saying commends like "come closer" or "sit down." Same mouthing and switching.

Each segement had 8 trials.

I think they were watching for where Eric looked, and also what he did. Here were his responses: Older women: just looked at middle screen. Second women: just looked at center screen. Sometimes laughed a little.

Third segment with clanging: full autistic stim mode like I have never seen. It was like someone turned on a switch. He jumped up and down on toes, spun in circles, flapped hands, laughed insanely and made weird noises, shook his head, pulled his hair. He wasn't upset or crying, just totally over-stimulated. When they switched to the next part, he just stopped doing that instantly and when the lady started giving commands, he did what she said, but was looking at the shapes still.

Final part that I don't get at all: they put big white socks on Eric and had a tv camera so he could move his feet and see them on screen. Then they showed on another screen the feet of another child doing the same thing and asked Eric which feet were his. They switched around the screens a few times. Sometimes Eric knew, sometimes he didn't. Anyone have clue what this was about? They told me it had to to with self-image.(Suzi?)

The next phase will be easier, I think. Eric and I will "play" for 30 minutes with one of the researchers to assess his social development. That's all we have to do.

I am so curious about how the NT kids responded. But Eric was just spent after this and I questioned if I should have done it at all, although he told me "I liked that game." It was just so obvious to me he was not interested in the faces or voices and to see how the clanging noise affected him was so painful.

On the one hand, I feel Eric has benefitted from years of prior ASD research and if we can help in this way, I want to. But I don't want it to hurt Eric either. The way this was described, it sounded harmless. They said he'll watch videos and his reactions will be observed and recorded. If I had known about the clanging, I might have had second thoughts.

Anyway, just wanted to share my complicated mixture of feelings, as well as the research topic, which I thought you might find interesting.

Katherine

iVillage Member
Registered: 03-26-2003
Thu, 09-22-2005 - 1:13pm

We have been involved in a few studies in the past ourselves. For the reasons you mentioned, plus our own reasons. I do draw the line when it is to stressful for the kids. For instance, I would love to have my kids in the AGRE study which is a genetics study where they study families who have more than 1 ASDer in it. We have the 2 ASer, a borderline PDD-NOSer and a autistic nephew so definitely fit. However, it include blood draws which are so horribly stressful for Mike it wasn't worth it.

Some of the pluses on research is that sometimes you can get more indepth reports and evaluations in an objective manner than you can often get through insurance or school district. Often the studies will provide you with a letter or thier results with recomendations which can be very helpful when approaching school districts.

Some of the research includes access to therapies and such that otherwise would not be available to you. Around here the big one as UCSD is PRT (pivotol response therapy) but it the study is only for the youngsters. Mine are too old.

And there is always the stipend (hehe). That my kids love. They usually get $5 or so out of the deal. I might get paid for my gas.

It is tough because you go in and get overloaded with info on your kiddo and it is hard to hear how different they are. Heck we know it on a daily basis but it isn't easy to see it there so plain in black and white. And studies often involve a pretty decent sized commitment so it is hearing and seeing it there over and over.

But overall it is a good thing. Your son will help them learn more about autism and you will learn more about your son which can only be helpful even if it hurts a bit.

(((HUGS)))

Renee

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Registered: 03-31-2003
Fri, 09-23-2005 - 12:23am
That sounds like a very interesting study. I will be very interested with the results.

iVillage Member
Registered: 04-11-2003
Fri, 09-23-2005 - 12:52am

I did find that interesting. Thank you for sharing.

Samantha

Samantha
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Registered: 06-25-2003
Fri, 09-23-2005 - 6:55am

Katherine,

I think it is awesome that you are doing this. It may halp a lot of people in time.

Thank you for sharing.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 01-19-2005
Fri, 09-23-2005 - 11:39am

It may take a few months for them to assess all the data, but I will let you all know the results when I have them. This is a joint project between the University of Miami and Florida International University, in case anyone is interested.

Renee, thank you for your response too. It made me feel a little better and I never thought about using the evaulations we receive at our next IEP, that could be really useful.

I guess next time I will ask a few more questions before agreeing, if there is another project that comes up. They did give us a gift certificate to Toys R'Us, which I thought was nice. And there is some monetary compensation at the end. But that's not why we're doing it, although it is a nice gesture.

Katherine

iVillage Member
Registered: 03-27-2003
Fri, 09-23-2005 - 1:07pm

Hi Katherine - sorry this was upsetting for you.