Upcoming research reports!

We're frantically and enthusiastically analyzing the results from the recent big study on special interests and "stimming" (motor stereotypies) that 342 women and transgender individuals participated in. 

The very first outcome of the study will be a brief publication on reasons for autism self-diagnosis in the subgroup of participants who did not have a diagnosis but identified as autistic. Although some were waiting for an assessment or were fighting to get evaluated, we were shocked to see that most reported reasons revolved around topics that were unrelated to clinical factors! We'll report on this in detail as soon as the publication has gone through the necessary quality control steps – to start with it'll be reviewed by independent experts. 

It also shouldn't take long before we send out the main findings for publication! I won't give any spoiler alerts here, but stay tuned!! 

THANKS to everyone who participated – your time investment will pay off. 

Still recruiting for super-popular study!

We're currently running an online questionnaire that aims to collect as much information as possible on the experiences of autistic women. About half-way through the study duration, we already have 280 responses, so we can't even begin to express how excited we are about the impact this study can have! 

We focus on two particular domains that already are known to show gender differences, but that have received limited attention: "special interests" and "repetitive movements" (aka "stimming"). Women tend to have different types of special interests and possible show fewer or different "stimming" patterns. 

We invite both self-diagnosed and officially diagnosed people, because we know that there is a problem of under-diagnosis in females. We are also warmly inviting transgender, genderfluid, and non-binary people and are delighted to see that we're getting dozens of responses from the transgender community – a diverse group of people who are often entirely excluded from studies! 

Thank you, thank you, thank you!! We hope the responses keep coming, and we promise to make the most of the information in every which way we can envision! 

Love, 
Kajsa & Team Extraordinary

Most popular blog article so far!

We've put out a little article on the blog about the responses we got from ~100 autistic adults, mostly women, on what they wished others would understand better about them. 

Find it here!

It's turned out to be our most successful article so far with lots of visitors. We're excited that our online community is growing so quickly and that we get such friendly and loving feedback! 

We're so thankful to all the autistic adults out there who are contributing to making this project real! 

First Amazon Turk trial!

We're excited to have run a little pilot study on Amazon Turk (MTurk) and gotten 100 participants in just over an hour, with a good proportion being autistic! 

We are building up towards launching some more quantitative studies and this was our first attempt to invite both non-autistic and autistic people in a venue that isn't specifically for autistic people. 

We're working hard to get some grant funding that would allow us to pay participants for their efforts! Please keep your fingers crossed for the Extraordinary Brains Team :-D We're analyzing data and writing grant applications with much excitement... 

Soon, we'll post a questionnaire about how special interests and "stimming" manifests in autistic women, which is an understudied topic that really needs your input. 

Follow our Facebook page or sign up for invitations if you're interested. Everything is anonymous and confidential and all studies are approved by the ethics board of Princeton University. 

We really can't do it without you, so thanks for all the support, feedback and encouragement! We know we're on the right track. 

Congrats to Lina for her book release!

Team Extraordinary is SUPER-PROUD of our own Lina Liman, who is releasing her autobiographical book in Sweden in May! 

She is busy with media appearances and all the commotion surrounding this amazing milestone, and we are cheering from the side-lines to celebrate both her and the fact that her book is sure to engage thousands of autistic women, health professionals and other interested people. 

For those of you who speak Swedish, check it out and buy it here, and see Lina's own website here, also in Swedish. 

We'll let you know when the book gets translated and enters the international market! 

First results published on the blog

Eager to give something back to the community, we did a preliminary but thorough analysis of the current responses to one of the small questionnaires "Is your autism a personality type or a disorder?" (which can actually be taken until Feb 28). 

The results are presented and discussed in our blog post Is autism a disorder strength or personality trait? We found a great variety of attitudes among the adult autism community, with many references to the short-comings of the non-autistic world.  

Thanks to Abby for the new logo!

logo_v2.png

You might have noticed that we switched out the old, somewhat arbitrary, images on this website, the Facebook profile and the blog platform.

Our very own Abby made us a new fresh logotype to represent the project, so no more random pictures of Princeton University buildings! Thank you Abby for the effort and for helping us build our online identity! :-) 

 

 

Keep up the good work!

We are so excited about how well this project is gaining ground! Thank you all who visit the Facebook page and this website, sign up for email updates, and – of course above all – participate in questionnaires. We couldn't do any of this without you. 

Once the first batch of questionnaires closes, we will brew lots of coffee and start analyzing the responses! Can't wait. We're also excited about the large proportion of female participants, given how under-recognized autism still is in women. We'll start reporting results back to the community through the Facebook page and newborn blog. 

Thanks again to everyone! 

All the best,
Team Extraordinary :-) 

Two new questionnaires launched!

While the responses keep trickling in for the Strengths and Challenges survey, we have launched another two questionnaires that are shorter and more open-ended. 

In one of them, we are interested in hearing your thoughts about how you personally view autism - as part of your identify or as a disability, or something in between or a combination... Whatever your thoughts are, we would love to hear them. We aim to publish the results so that funding agencies, scientists, and neurotypical people in general can read and learn.

The second questionnaire is exclusively for women (transwomen included of course) and asks an open-ended question about what it's like to be on the spectrum as a woman. Female autistic people have so far had a very low profile, so we are hoping to find out more about your challenges, thoughts and wishes and anything else you can think of. 

An avalanche of responses!

After quite a slow start with brand new social media presence, the first questionnaire is picking up! The number of responses has doubled in the last hours and more questionnaires keep being submitted. Keep them coming – the more we have the better research we can do!!

I can't express in words how grateful I am for your responses and stories. 

Also, thanks to those who have messaged us and pointed out mistakes and issues. We listen to everyone. 

Kajsa