Welcome, Maria!

Today, Maria arrived at work wearing a light green tutu, because it’s a big day! She is about to be employed in my newborn lab, within the project Extraordinary Brains.

Today, we walk proudly through the corridors, because we’re now officially a lab! And that’s not the only victory. We’ve gone through a lot to be where we are today.

 
Maria, in the building for child and adolescent psychiatry, at the University Hospital in Linkoping, a few feet from our offices.

Maria, in the building for child and adolescent psychiatry, at the University Hospital in Linkoping, a few feet from our offices.

 

Maria is a civil engineer and teacher, and has an extraordinary brain (autism, ADHD, amazingly competent and amazingly wonderful). She has hit the wall three time after pushing herself way too far in her profession of engineering. She’ll write more in the blog about her experiences soon.

Her private life consumes most of her energy , and she has a drive and creativity that both helps and creates challenges. She loves Lego and (luckily) has a like-minded family. Her entire basement (and sometimes the living room) is basically drowning in Lego. I know, because I’ve been there!

If you haven’t stepped on her Lego, you don’t know the real Maria ;-) Well.. it might not be entirely true, but it’s not far from it…

 
Some of Maria’s creations

Some of Maria’s creations

 

Maria has spent a year in rehabilitation with Extraordinary Brains at Linkoping University, and we’ve witnessed an amazing development. Everyone who’s been close to Maria is very impressed.

When she first arrived, she was in such bad shape that she wasn’t able to turn on her computer without sort of losing it. We had to take it slowly, and find new ways of getting around her sensitivity to stress. Slowly, she’s become calmer and more secure, and slowly she’s regained her strengths — the strengths that had been hidden in the background, inaccessible due to the chronic stress..

Now, one year later, Maria has found a kind of balance in her life, and she’ll be the first member of my lab. Research Engineer Maria! I’m so very happy!

She’ll write more about this herself, but it’s big news. We are establishing ourselves in Sweden with the first employee (apart from Kajsa), and that’s an employee who’s managed to survive a rollercoaster going from complete exhaustion to self-acceptance and balance. Can it get more awesome than that?

Yay for Maria, and welcome to the lab!!

/Kajsa

Featured in Spectrum News

Today, an in-depth article on camouflaging in autism went online on the autism news site Spectrum. Several autistic women were interviewed, as well as Kajsa and a number of other researchers, making it quite a versatile piece, reflecting a very important issue that's close to the heart of everyone involved in Extraordinary Brains – not the least all our research participants!

Some results from our large questionnaire-based study on repetitive behaviors (stimming and special interests), that 342 of you participated in, feature in the article. We'll write more on that here soon – we're sitting on lots of news... 

Fundraising outcome

We ran a small fundraiser on Facebook a couple of months ago, to help us collect some funds to allow a period or dedication to the online studies with autistic adults – which generally are in competition with hard-core brain imaging studies with deadlines and other requirements. 

The end result will fund 138 hours of work, which Kajsa will use to write up the results we've collected from online studies so far, and run a follow-up study. Warmest thanks to everyone who donated! We promise to make the most of it! 

Is Camouflaging a Balancing Act?

Journalist is seeking autistic people willing to share their own camouflaging experiences!

 
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I am a journalist writing a major feature in Spectrum on camouflaging, on the latest research and personal experiences. I would like to find people willing to share direct experiences. What are the costs or camouflaging versus the benefits? Is there anything else about it that you'd like to say?

Submissions closed – the piece was published in Spectrum and The Atlantic.

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 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

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 on 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! 

Thanks to Abby for the new logo!

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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