Research project studies what autistic adults want to study!

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Hello,

I am a community board member of the AASPIRE project, which is about researching what autistic adults want to research about autism. The research is done in equal partnership between autistic adults and university researchers. To participate in this series of studies it is a unique opportunity to support autism research done together by autistic adults, supporters and scientists to the benefit of autistic people.

AASPIRE is a project by the Autistic Self-Advocacy Network (ASAN), Oreagon Health & Science University and Portland State University. Together with Morton Gernsbacher's lab at the University of Wisconsin-Madison, AASPIRE is conducting online studies. This collaboration is called "The Gateway" project.

This is how it works: Individuals who are 18 years or older are eligible to do the Gateway survey at the project website. Based on the needs of different studies that are prepared or currently take place, people who completed the Gateway survey may be invited via email to participate in studies they are eligble for. This depends on the individual studies and what they want to research (depending on e.g. age, gender, education, etc.).

What follows is the text of the official invitation for Gateway. It is approved by a University review board:


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Be Included in Autism Research
The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab believe in research WITH autistic adults, not just ABOUT autistic adults.

Together, we have created the Gateway Project, which is an online gateway to research that
-> encourages the inclusion of autistic adults in matters that affect them;
-> includes autistic adults as equal partners in research about autistic persons;
-> answers research questions that are considered relevant by the autistic community;
-> uses research findings to effect positive change for people on the autistic spectrum.

The Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you’re at least 18 years old and have access to the Internet, you can participate in a series of online research studies. Upcoming studies address topics such as healthcare, well-being, and problem solving.

To participate in the Gateway Project:
1. Register online for a Gateway account starting at http://www.thegatewayproject.org
2. Take the online Gateway Survey. The survey takes about 20 minutes to complete.
3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon.com gift certificate.

If you would like to learn more about the Gateway Project, you can

Go to the Gateway home page at http://www.thegatewayproject.org
Send an email to [email protected]
Make a telephone call to Dr. Morton Ann Gernsbacher at 1-608-262-6989 or Christina Nicolaidis at 1-503-494-9602

OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Morton Ann Gernsbacher, PhD, University of Wisconsin–Madison
Christina Nicolaidis, MD, MPH, Oregon Health & Science University

Please pass this information along to your friends!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Here are relevant links with more information:

Gateway home: http://www.thegatewayproject.org
AASPIRE home: http://www.aaspire.org/
ASAN home: http://www.autisticadvocacy.org/
Morton Gernsbacher Lab: http://psych.wisc.edu/lang/intro.html

If there are any questions about this research project I would be happy to answer them. The research project continues to recruit participants and everyone aged 18 or older is eligible to take the initial survey!

With best wishes,
Sebastian

Last edited by Sebastian on 27 Jul 2010, 1:59 am, edited 2 times in total.

You do realize that people with Autism have problems with Focus, Processing and Executive Function?

What you're proposing sounds intriguing, but this mass of information is off-putting. Its too much like having to wade through government paperwork. If you want very many Autistic adults to participate, you'll need to simplify. We're by no means too stupid to understand, but easily overwhelmed by too much input in large chunks. Streamline, please.

Agreed. Step by step list would be quite useful here.

I think this sums it up:

Thanks.

And, for the record, the site itself is well-organized and gave me no trouble.

That was pretty interesting to do.

Thank you for your feedback. I will pass on any sugestions that can help improve the research project. For the record, all material has been reviewed or created by autistic people on the research project. We try to maximize accessability and try to improve, so thank you again for your suggestion.

Interesting idea, I hope that it is a bit of fresh air to the research community.

I worry that the nature of research done in general will not serve the needs of the ASD community, as it will oftein be directed by the funding choices made by funding bodies such as goverment funding councils and some large charitys. I sincerely hope that if the ASD community have an input into the research direction that it might come up with things of us to those on the spectrum.

I would like to see autistic people have a say in how research funds get allocated.

That said, I think AASPIRE and the Gateway Project and a project in Germany named AFK, AutreachIT in the UK and ReactiveColours in Wales are very well received. I think if succesfull, these projects can demonstrate by example the value of input by autistic people to autism research. So I see this as an opportunity for autistic adults to contribute to autism research.

AFK: http://autismus-forschungs-kooperation.de/english
AutreachIT: http://autreach.backpackit.com/pub/1392021
ReactiveColours: http://reacticklesglobal.wikidot.com/de ... eactickles

Like AASPIRE and the Gateway Project, these three research projects work with autistic adults as partners.

Hi,

AASPIRE and the Gateway Project are still looking for participants for our studies.

The website to participate in the study is http://thegatewayproject.org/

The website also provides more information about the research project.

Best wishes,
Sebastian

Where will my information go? will people see and use my interests and age and such?

From reading this forum, i think the three biggest questions that most people with Autism Spectrum Disorders want to know is:

1. How can we get and hold on to a job and secure an income which isn't disability?
2. How can we get a girlfriend/boyfriend?
3. How can we be more social and get friends?

Solve these three questions and alot of Aspies/Auties will experience a tremendous boost in quality of life.

And in exactly that order of importance too.
Hmm.. And get better access to education tools organized to help us deal with schooling.

I'm participating! I'm in it for the giftcards.

Hi,

for each internet questionaire and online study of AASPIRE and Gateway there is an information sheet available before starting the study. These information sheets inform participants about the purpouse of the study and the persons in charge and how to contact them if desired.

After reading the information sheet participants can decide if they would like to participate in the particular study or not.

The AASPIRE website is also being updated to inlcude a FAQ - frequently asked questions section in the near future.

Sebastian

Hi,

thank you for this feedback. We constantly look for ways to improve the work of the AASPIRE and Gateway project.

The initial internet survey every participant needs to take also askes participants about what autism research should focus on.

Therefore by participating and filling out the first online questionaire it is possible to share your priorities in autism research with the research team.

Sebastian