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! 

Your 9 criticisms of our work - with responses

--- Kajsa Igelström ---

When we launched the Extraordinary Brains Project in January 2017, we weren't sure where to start. We had no online presence, no follower base, and not really any idea about what the autism community would find interesting or valuable. 

We knew that we wanted to start with a simple preliminary study on how basic functions (such as sensory processing) interact with more complex functions (such as social function). It was hard to make a meaningful pilot study that wouldn't take an hour to fill out, so we compromised to make it quick and simple. This was our first questionnaire and the response rate was good – more than 130 people filled it out. 

We also had a bunch of more qualitative questions, so we launched six small questionnaires with only 1–2 questions, and hoped some people would share some stories and opinions. We thought perhaps people would be more likely to engage in the research with the shorter more open-ended format. How wrong we were! We received around 30 responses for the first two and fewer for the others. Perhaps these ones actually require more effort, because the questions are broad and there is little guidance as to what to discuss. The responses we do get give us a lot of insight and ideas though! 

Your responses to our efforts have been overwhelmingly positive. I've felt so lucky to have been let into a society with so many amazing people who are so willing to share their experience. Occasionally, we have run into barriers or misunderstandings too. We thought it would be useful to collect some of your feedback here, and respond briefly to it. Feel free to discuss more! 

Thanks everyone for your help, advice and input. 


1. Don't say we "have" autism!

Despite the neurodiversity of our own research team, we were unaware of exactly how sensitive the issue of language was: Should we say "an autistic person" or "a person with autism"? Do we say someone "is autistic" or "has autism"? We decided to adapt on social media to the seemingly most common preference: "I am an autistic person". But our dilemma will always be that opinions differ. After looking into it further, it is clear that different subpopulations feel differently about this issue. We can really only say that we regard you all as people with equal inherent value and we respect you highly no matter what phrasing we use. 


2. We just want acceptance! Stop using us like guinea pigs!  

No one actually said this literally, but we have faced the attitude a couple of times that autism research is there to eradicate autism or decrease its acceptance in society. Some people feel that if we do research on autism, we are pathologizing it in a way that doesn't benefit autistic people. We get it, but here is our truth: We are scientists (some of us are even autistic scientists), and we are curious by nature. We want to understand how the brain works, and are intrigued by how the brain develops so differently in people with different strengths and challenges. Furthermore, a lot of autistic people suffer and there is little help to get. So we do have a hope that we can figure out a way to help – not by eradicating autism, but by understanding autism. Our research starts with YOU. But you are totally free to choose not to take part, so please don't feel like a guinea pig.  


3. What about cultural differences? Do you care? 

A few people have commented on the importance of culture, socio-economic factors and social context. This is something we haven't addressed in our questionnaires so far. But yes, we do care. We have a list of autism-related study topics that is so long it would reach all the way to the awesome autistic women in Egypt. We will always have to pick and choose, and in our questionnaires we are particularly limited because we need to keep the duration short. However, we are neuroscientists (not social scientists or anthropologists), so we will stick with our expertise while keeping these factors in mind. 


4. You should have asked questions about X, Y or Z.

Many people suggested topics to ask about and ways of refining existing questions. A lot of the suggestions have been very inspiring and made it onto our list for consideration in future studies. With the need to keep the questionnaires short, we are limited in how many topics we can deal with and how much detail we can include. But please keep suggesting new topics and ways to improve things. And thanks for pointing our whenever questions were unclear. 


5. We hate Autism Speaks. If you mention it we'll hate you too. 

We were unaware of the controversies surrounding some of the autism organizations in the USA and their reputation among autistic adults. Trust us, we know now! We won't discuss this topic here, but a link to an Autism Speaks state-by-state resource guide in our first questionnaire cost us a lot of participants! We have consulted with some of you to find out which resources you feel are most helpful and have improved it. 


6. The questionnaires are too short! 

The short open-ended questionnaires sometimes got comments that they were too short and that it would have been helpful with more specific questions. We agree! Those were questionnaires designed to open up a dialogue with few limitations. If that's not your cup of tea, we are in the process of designing really thorough questionnaires, guided by the responses from the first set of pilot studies.  


7. Remember the gray areas! 

There were some comments around the topic that the questionnaires did not capture participants' reality in a fair and unbiased way; that they oversimplified the issues and assumed things are black and white. This is a general problem with questionnaires and we are painfully aware of it. That's also why we always include free-text boxes to allow you to elaborate if you feel you'll get misunderstood. 


8. My answer to your question doesn't mean what you think it means!

This popped up every now and then – that a particular multiple-choice question was assumed to be probing a specific thing, and the participant knew that their answer would be misinterpreted. This does happen in questionnaires. I always struggle filling them out myself for this exact reason. We include free-text boxes so that people can explain if it feels wrong, and we do read these comments. Most often, we are also aware of the complexity of topics and know about the confounds and biases. 


9. Thanks for noticing us!

We have been so happy to see that many have expressed support for our efforts, and that you are starting to trust and know that we really are on your side. Many seem to appreciate being asked questions directly instead of through health professionals or others. As one participant said: "Since we live with this disorder every day, we have a unique and more accurate understanding of it than anyone else on the planet, and anyone seeking to learn more about it should turn to us." 


And with those wise words in mind, I'll finish this post. Hope to see you on the research website or on Facebook

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

A discussion on cognitive tests in high-functioning autism

--- Anonymous ---

For all of us, our behavior is what is visible; it is what defines us in the eyes of others. Yet, behavior is only the end result of multiple internal processes that – in our own eyes – define our identity. As a high-functioning autistic individual and neuroscientist, I experience two distinct discrepancies in my interactions with others. First, my rich internal world cannot be adequately expressed by my behavioral repertoire. Second, the social response of neurotypical people often mismatches my intended behavioral output. My curiosity becomes aggression. My concern becomes skepticism. It is disorienting and painful. A very common experience among autistic people is that of a lifetime of repeated misunderstandings, and a lifetime of being severely underestimated.

One setting where it is particularly important that neurotypical and autistic people understand each other is during a neuropsychological evaluation. Cognitive tests are designed to tap into specific functions of the brain, such as the ability to organize or remember information. To work, these tests generally require intact sensory and motor systems, and they need to be given in a setting where the subject is minimally affected by stress, noise or performance anxiety. There are many potential confounds in testing autistic people, such as sensory sensitivities, coordination deficits and problems with novelty. 

Here, I will focus on a less recognized challenge: the difference in thinking style between autistic and neurotypical people.

Highly logical, detail-oriented information processing can provide an enormous advantage academically or professionally, but in other venues it can be a barrier. Few people are unaffected by the highly artificial social setting of a cognitive evaluation, but for an autistic person the interactions can come across as outright bizarre. Kate, who recently wrote about her intensely negative experience of a research study, described feeling humiliated by the scripted questions and “silly” test materials. These are her words regarding a test involving judgments about the “trustworthiness” of a series of faces:

"I told the tester that I did not know any of these men so how could I possibly know if they were trustworthy — and anyway, of all racial and ethnic groups, white men have proven to me to be the very least trustworthy, so I didn’t trust any of them. But I still was asked to flip through every one of the fifty pictures, and say, ‘no, not trustworthy,’ because I didn’t know them. This was absurd."

It is not that difficult to understand both sides. Tests are standardized; there is little flexibility. The scripting is the same for everyone, autistic or not – that is part of what makes them valid. But there are aspects of the autistic mind that are poorly compatible with the way cognitive tests are designed. 

Or, rather: 

There are aspects of cognitive test design that may prevent them from accessing the autistic mind. 

Kate was not trying to be nitpicky; she was expressing her honest confusion. And note that, in this case, on this test, there was no evidence of a purely social deficit, even though her test scores must have been abysmal.

I believe there is a very autism-specific confound in many neuropsychological tests: the performance of an autistic person may reflect a hyper-logical thinking pattern rather than an inability to read faces, empathize, or whatever the test is measuring. This is a true barrier to understanding the autistic mind and a potential confound in research studies attempting to assess cognitive function in autistic people.

When I went through neuropsychological testing in the mid-nineties I felt the same type of confusion, although I was unable to articulate it at the time. I was presented with cards with drawings of people. They were not real people. They did not feel anything. The stories I could potentially make up about the drawings were literally unlimited. I could pick any scenario, ranging from a shallow interpretation of the immediately obvious visual information, to a dark twisted Kafkaesque fantasy that would surely strand me with some ominous psychiatric diagnosis. I had a literally unlimited repertoire of interpretations that could all be considered realistic, given that nothing about this situation was realistic. 

Performing the test required significant mental acrobatics to streamline my mind into some acceptable output. Again, the interpretation of my behavioral output did not match my internal reality.

The consequences of hyper-logical thinking are not limited to tests of imagination or social function. Give me instructions for any test and I will probably see ambiguities that are invisible to the neurotypical individual. If you tell me to name “each of the objects”, and then point at only one, my brain struggles to switch from “Each object” to “Whatever object you point at”. If you want me to pair a cartoon dog with one out of four cartoon objects, my brain will immediately form associations for all the objects. 

I have to model the neurotypical mind, and realize that you want me to simplify this exercise to a stereotypical association between a dog and its bone. 

To pass the test, I must wrestle my complex mind into petty generalizations. That is not something I am good at, and it sure can be disabling, but it does not necessarily reflect a deficit in the function that the test aims to isolate. And to characterize this possible confound, it will be necessary to start a dialogue between scientists and people with autism.