Opinions expressed in this blog are those of each post author. They are not necessarily endorsed by the whole Extraordinary Brains Team or by Princeton University.

Thursday, August 24, 2017

If we don't want a cure - why study autism?

Kajsa Igelström, PhD

Many autistic adults that we've been in contact with take a very strong standpoint against autism cures or treatments. Extraordinary Brains has been focusing on experiences rather than interventions, but we are interested in the brain too. In this article, I'll tell you why I believe that brain research on autism can revolutionize the lives of many autistic people, in the long term. Not by curing or minimizing autism, but by improving lives in other ways.


The problem with autism cures


By definition, our Internet-based platform limits our interactions to autistic individuals with good verbal abilities and the motivation to reach out and communicate. Thus, a parent with a severely struggling child, or an autistic adult who can't or won't communicate online, may very well wish for a cure, and a number of our own participants do too.

We view everyone with compassion, and I will boldly state that I think that those who want a cure deserve to be heard by researchers too. But it's not my personal goal as a scientist, and Extraordinary Brains will never aim to cure autism.

It is not difficult to understand that the concept of a cure can be upsetting. Autistic individuals continuously have to fight for acceptance, both from others and from deep within themselves. Today's adults were generally diagnosed late, often after many years of suffering. For many, the key to better well-being has been to find self-acceptance, and an important mission of the autistic community is to advocate for the right of autistic people to be just the way they are.

I, too, think that autistic people are intrinsically great (extraordinary in fact...) just as they are - without being cured, or changed, or improved.

I just want everyone to feel better.


The difference between treatments and treatments


This is a point that I would like to emphasize. I'm sure there are some scientists out there who aim to find a treatment for autism in the same way that you find a treatment for cancer: a therapy that somehow takes away the actual autism.

The majority of neuroscientists, however, use the phrase "treatments for autism" without meaning it in a literal way. In the past, I have used these words myself, but to mean "interventions that help autistic people feel better, because they feel like s**t a lot of the time".

Using the phrase "finding treatments" instead of a phrase along the lines "figuring out ways of helping out" may have been a huge mistake made by hundreds of scientists who didn't realize that the literal interpretation of it would cause autistic people all over the world feel less accepted as human beings.

It's critical that the scientific community understands the power of words, and learns to speak the language that autistic people prefer and can identify with.

So when it comes to autism treatments: Extraordinary Brains definitely wants to help, but not by removing or minimizing autism itself. And, as outlined above, I do suspect that a relatively simple semantic misunderstanding underlies some of the controversies surrounding "autism treatments".


Why do neuroscientist want to meet autistic people? 


Autistic people are regularly recruited for scientific studies that focus on psychology or neuroscience. Sometimes these involve giving blood or other samples, sometimes they involve questionnaires or interviews, and sometimes they even involve brain scans. Luckily, real research is always voluntary, but for those who do participate, the concept of being recruited as a "patient" may still trigger that feeling of being overly pathologized and unaccepted.

The main reason for the scientific interest in autism is that many, many autistic people feel terrible. It's extremely common with poor mental health and poor general outcomes (e.g. unemployment). There are severe medical co-morbidities, such as epilepsy, that may be caused by the brain variations that also underlie autism. And the autism spectrum is so insanely broad, and autism is so insanely complicated, that we are far, far from understanding these brain variations.

While it is true that life would be a whole lot easier for autistic people if society could simply accept that they function in a different way, there are some aspects of autism that may not be possible to address in that way.

For example, sensory sensitivities can be so debilitating that it's impossible to live a full life, even in an adapted environment with accepting people. Attentional and executive difficulties can make daily chores so exhausting that there is no energy left for anything else. Certain types of social challenges can cause utter isolation for some people, regardless of the behavior of people around.

So while there is a group of autistic people who could achieve sufficient well-being through social acceptance and accommodations, this really isn't true for everyone.

That's where neuroscience can help. If we can understand the brain basis of, for example, sensory, social, or attention problems, we may be able to develop strategies to target those particular challenges, with great specificity. I myself am #ActuallyAutistic and am thankful for my weird and wonderful brain - but if I could get a treatment that just turned down the sensory volume a notch, I would accept it in a heartbeat. If my sensory sensitivities could be treated, I'd be able to do more neuroscience without perpetually postponing the laundry or crashing from exhaustion after every conference.


Extraordinary Brains


We call this project Extraordinary Brains, because autism, ADHD and other neurodevelopmental conditions do give people a unique mixture of strengths and weaknesses. Your brains are extraordinary in the sense they're amazing but also in the sense that they're out of the ordinary. You may be struggling, because the world isn't always easy to live in and interact with, and you may have neural limitations that stop you from living life to the full.

We want to help minimize your struggles, and preserve all your uniqueness and all your strengths. The Extraordinary Brains Project aims to reach out to as many of you as possible to take part of your views, experiences and opinions, and also start taking baby steps towards understanding the brain well enough to come up with some seriously badass ways of helping out.

We have a long journey ahead of us and we have to work together. Please keep sharing your priorities and opinions – we take them all into account when fine-tuning this young research program and planning our future studies.




Monday, August 21, 2017

Outreach and fundraising – deadly dilemmas

Kajsa Igelström, PhD

When I launched Extraordinary Brains in January 2017, I had a frontal collision with the world of social media marketing. And just recently, fundraising was thrown into the mix too. This brings up some challenges that I wanted to tell you about.

Extraordinary Brains has so far been based online. I have designed websites, blogs and Facebook platforms in two languages, and have interacted with many people in various ways. The team is growing and our follower base is growing. Despite overwhelmingly good feedback and a promising future, there are some aspects of this mission that present dilemmas that I'm not sure how to deal with.


Reaching the like-minded


I loved Facebook (FB) when I joined it in 2007. I lived on a continent far, far away from family and friends, and FB allowed me to see snippets of their lives in my Newsfeed. While I didn't necessarily care about my old schoolmate's laundry progress or the weather in Stockholm, I still enjoyed the updates.

Then FB changed. More and more ads started to show up in my Newsfeed and the social climate shifted... My feed started to be dominated by shares and links. It no longer showed much personal stuff. I wanted my old FB back.

Ten years on, I started Extraordinary Brains, and FB is the best outreach platform for us. I wanted our posts and study invitations to reach people who might be interested and not annoy those who weren't. But it's not as simple as posting and hoping for the best.

An FB page with few views and few likes turns out to be hopelessly invisible. If I post a study invitation in an FB group, it must gain immediate attention in the form of likes/comments, or it is kicked off the Newsfeed within an hour and never shows up again. Not even those who explicitly follow our FB page can necessarily see our posts!

How was I going to get clicks, likes or views (and thereby community input and research participants) if I couldn't even reach people's Newsfeeds? I understood that Extraordinary Brains would be doomed without my credit card.


Paying for visibility


I first paid to promote the page for a period of time. This means it started to show up in people's Newsfeeds, labeled "Sponsored". Argh. I hate "sponsored" posts in my own Newsfeed, and now I was putting mine into other people's feeds. And seriously – "sponsored"? I was just paying twenty bucks for a tiny bit of visibility and a sporting chance.

Extraordinary Brains got followers and attention, with the help of initial promotions and, increasingly, reputation and shares. But because we post infrequently and selectively, the page will never have a million fans, and individual posts have little chance of even reaching the followers.

So occasionally, I also promote posts. This also involves my personal credit card, but the posts show up in your Newsfeed as something along the lines of "Post you might like".

I do it minimally and hesitantly, but I'd rather pay a few dollars than post "click bait" several times a day to gain visibility. I'm intensely uncomfortable with promotions, but the encouragement I'm getting from hundreds of those who do discover Extraordinary Brains makes it meaningful. And increasingly, our reputation and growing page size are enough to make my credit card less necessary for basic exposure.


Actually getting funding


We're in good shape now on social media. But another aspect of harsh reality is that science needs funding. Just publishing a paper usually costs hundreds or thousands of dollars and our first one is in the pipeline. In addition, this research is not easy to get funding for. I do it because I care, but it's the brain scanning experiments that will secure my scientific survival. So currently, I run Extraordinary Brains on top of a full workload of hard-core neuroscience.

Without funding, the research dies. This is why we're currently fundraising (on FB and website). But this is related to another dilemma.

Extraordinary Brains is only half a year old, but I estimate that within the next 6-12 months, it'll be competitive enough for at least some small research grants. We need grants, because the project is getting so big and so popular that we can't keep working for free and we can't keep asking our participants to work for free.

Here is my problem. Science is usually funded by grants from governmental sources or private foundations. At this point, Extraordinary Brains is too young to get governmental funding, but may be competitive for some grants from private/charity funding bodies.

Obviously, our best chance is well-established autism foundations. But some of these are – mildly speaking – loathed by the autistic community. If you're a late-diagnosed autistic adult, you probably know the debates I'm referring to. Part of the problem is that the goals of some foundations are poorly aligned with the interests of autistic adults. I have no problems understanding how upsetting that is.

But another part of the problem seems to be a wide-spread belief that scientists somehow become puppets of evil forces if they receive funding from these foundations. Such conflicts of interests are perhaps possible when commercialization is involved, but it's not true for conventional research grants. I can explain this in detail in some other post, but probably shouldn't use this space for it.

My point is that I – as an #ActuallyAutistic research leader – am stuck between the reality of needing research funding and maintaining credibility in the eyes of the autistic community. To be honest, to me it seems like it would be a fantastic outcome if Extraordinary Brains got financial support from your long-standing enemy: they'd effectively be paying you back, right?

But I'm not willing to risk losing your trust, so instead I'm fundraising on Facebook and on our website. Again, I'm hesitant to use online marketing (as per my personal reasons above!), so this crowdfunding efforts really rely on shares and likes from the community.

I ask you to please help share the fundraising efforts you sympathize with. Because I can't both take your side against You-Know-Who and achieve world-wide impact through Extraordinary Brains – at least not yet.






Friday, August 18, 2017

Your feedback on the ongoing study

Kajsa Igelström, PhD

I've been trying really hard to suppress my excitement and not take too many sneak peeks at the responses to the questionnaire about women's "stimming" and "special interests" that's currently ongoing. 😇

But I did scroll through some of the feedback sections to look for potential issues.

I was happy to see literally hundreds of very positive comments. They actually made me cry from happiness, gratitude or empathy. There were no really major problems, but there were a few things that I thought I might briefly clarify here. (Feedback that is not addressed here will still be taken onboard of course.)


Gender, sexuality and race questions


Thanks to several personal, friendly approaches from individuals from the transgender community, we have tried to refine the phrasing and terminology of the sex/gender questions, but I do realize we still don't get it exactly right. I apologize, but we're improving – I really just need to connect better with you, to understand all the nuances. 

We did make some small changes while running the questionnaire, but we are very limited in making late changes as we have to ensure the validity of the study. 

The current questionnaire is not perfect, but now it does have enough options to let everyone participate. We will incorporate feedback on sex/gender questions in future questionnaires, and consult with a larger number of you. 

We don't ask about sexuality or race in this survey. As always, exclusion of a topic does not equate a lack of interest – we just have to choose a minimal number of questions, or it'd take too long to fill out. 


The "autism survey" on the final page


I will not name the questionnaire on the final page of the study. But I will say that we know that it can come across as irrelevant, too rigid, or as someone put it, "stupid". 

We include it as a mandatory part, because it will greatly help this research get published and accepted into the scientific community. Please trust me on this. Scientific respect will give us the power to make a difference, and allow us to continue the research program. 

But we really do understand how it can feel to answer these questions, and we appreciate that the vast majority tried your best to do it anyway. 

Please do not fill it out at random. We know its limitations, and we know it's frustrating for some of you. Perhaps it helps to remember that our research can help the development of more autism-friendly surveys in the future! 


Exclusion of other autism-related topics


Each study must be limited to a small number of topics, otherwise they'd either barely scratch the surface, or they'd take hours for you to complete. This study is limited to a couple of topics and exclude other important ones (trust me, there are so many more things we wish to ask!!). 

Again, exclusion does not mean a lack of interest. Our hope is that we'll be able to recruit some dedicated participants for a series of in-depth studies covering a much broader range of topics, but this is still in the future. 


Difficulties with the "special interest" page


Some participants expressed they had difficulties responding to the questions on the page about "special interests". I think this is in part due to the broader, more open-ended nature of some of the questions. We knew it would be challenging for some of you, but we nevertheless decided to use this format in the very first study. 

The reason for the current format is that we did not want our own expectations or biases to influence your responses. It was particularly difficult to design those questions. It is okay to write that you struggled to understand or respond, and still submit the questionnaire. The answers we do get give us a great start, and I saw that this page has in general returned a lot of information from the majority of participants. 


Big thanks to the 300 women who have participated so far! We really appreciate Facebook shares and all help we can get to invite as many people as possible. 

Saturday, August 12, 2017

250 women have contributed! Can we get to 500?

Our study on autistic women's special interests and "stimming" is super-successful, thanks to YOU!! 


As of this minute, we have received 250 submitted questionnaires – a GOLDMINE of information about "non-male" autism that nobody has ever seen before!

The more responses we get, the higher impact we can have on society.

Please share it widely so that we can listen to as many unique voices as possible 💚💙💛

It's open until September 1st!

More information HERE.


You can also read our responses to participant feedback HERE.



Thursday, August 10, 2017

Love & Autism: My Neurodiverse Marriage

Finding a partner when you have an extraordinary brain can be difficult, and perhaps this is sometimes extra true for those of us who are autistic.

We live with a messy mixture of strengths and difficulties, and because every autistic person is completely unique, there are no simple guidelines. Many of us feel isolated, many of us are single, and many of us don't even know where to begin!

But here I won't outline the difficulties that we face or deliver a bullet list of solutions. It's just my own story about a marriage that seems to be sustainable for our particular combination of two unique autistic brains.





Opposites on the same end of the spectrum


My husband and I are both autistic and highly intelligent, but apart from that we're polar opposites in terms of strengths and challenges. Actually, we're quite a comical illustration of how broad the spectrum is.

He gets overwhelmed by eye contact and can't understand body language. I'm hypersensitive to social cues but often misunderstand them, and I maintain eye contact with an intensity that can penetrate the comfort zone of the most extroverted neurotypical people. I'm debilitatingly sensitive to touch, lights and sounds, whereas he fails to notice intrusive inputs and doesn't know where his body is in space.

I pick up between-the-lines communication, but don't know how to respond, and my sense of humor is sarcasm-based and rather bizarre. He can't for his life pick up hints or understand irony, and likes slapstick humor and teasing. I use metaphors – he doesn't.

He stims by touching his hair whereas I spin on chairs and walk in circles. I do it in secret; he does it without awareness. He is heavily into repetition and rituals, while I can't easily form habits or organize my days. We both need to live in a small, simplified world, but for completely different reasons.

We're both socially insecure. He shuts down in large groups and calls me his social wingman. I melt down after social events and hold on to him in public places.

My first impression of him was that he was overly opinionated, and his first impression of me was that I was quite intimidating. But we became friends and gradually got to know each other over a few years. But obviously, he wasn't "my type" and I wasn't his.

Fast-forward another few years and we're married. How did this happen?


Challenging social expectations 


I said to him from the beginning that I wasn't girlfriend material. My internal template of a romantic relationship contained certain building blocks. Unconditional closeness, frequent or at least regular sex, babies... I just couldn't see myself living in a romantic relationship without constant sensory overload.

I resisted, but we talked. We talked about our fears and dreams, about our weaknesses and needs. He was scared to lose his personal space and his other friends. I was scared that I'd disappoint him. We were both scared to end up suffocated. We were both scared of being heart-broken.

Once all our fears were out in the open, they were less of a burden. I began to think of our relationship as something that we were about to create, in our own way – not according to societal assumptions. Years later, we still get confronted by new challenges, but so far we've navigated through them together.


Merging sensory differences into physical connection


Naturally, one of our earliest challenges was that of our very different sensory experiences. Touch and intimacy are integral to bonding.

At first, I didn't tell him how hard it was for me to be touched. In the meantime, he couldn't read my non-verbal cues and adapt his actions to them. He was also facing his own battles, because he'd always been overwhelmed by physical contact and scared of making mistakes through his poor social intuition. This could all have gone terribly wrong, but we've tried to find words for it, and are gradually figuring it out.

I've broken down many times. I've hated myself, I've tried to conform, I've tried to let go. He's faced the pain of never knowing whether I'd flinch or invite him. Intermittent, unpredictable rejection can be a deal-breaker for any relationship, but add some autistic inflexibility and you can probably imagine how lost he's felt at times. What are the rules today? He just never knows.

We could've given up early on, but we keep trying to turn to our common strengths: verbal communication, honesty and loyalty. Understanding each other's fears, reactions and limitations has saved our marriage.

Gradually, he has developed social interaction strategies for my different sensory states, and he simply asks if he's not sure. This way, he uses his intelligence, pattern recognition skills and verbal strengths to navigate an otherwise tricky social territory. I, on the other hand, help him with his insecurities by using words, rather than my body language, to guide him, and I don't get offended or upset if something goes slightly wrong. We can both feel safe.

Step by step we're finding our very own ways of being close, and we are close. Every morning and every night, we wrap ourselves around each other and share warmth and peace. And every now and then we converge for a verbal evaluation of how we feel about our physical connection. We always agree that things aren't perfect, but so far we've wanted to keep going.


Bridging communication differences


Our equally autistic but very different communication styles have clashed majorly! There have been times when things seemed impossible, and we still need to put some serious effort into resolving misunderstandings every now and then.

My personal logic is that potential issues should be addressed before they grow into a problem, and I prefer to just ask if I suspect that someone is burdened by frustration. His experience is that a problem has to be near-deadly before you confront someone with it, and he easily gets flooded with defensiveness and emotions upon direct confrontation. See the problem?

It took several serious clashes and a lot of talking before we began to understand each other's perspectives. I had to respect that my confrontations caused emotional overload (the analogy with sensory overload really helped me understand this). I try to approach him a bit more carefully. He had to understand that I don't build up resentment before bringing things up, and that my tone of voice doesn't match my intentions. He is less easily threatened these days.

Other times, when I'm near a melt-down, I can get unreasonably passive-aggressive. He puts his foot down and tells me to stop lashing out at him, and this helps me take responsibility for my behavior. Once we're on the same team again, he sometimes embraces me to help me through it. Other times it's better if I withdraw to a dark room and wait for it to pass. The important thing is that we don't get lost in irrelevant arguments.

We've come up with little tricks. They're mostly verbal, because that's how we roll. He might say "I'm feeling very attacked by you right now" or "What do you actually want me to do about this?" I might say "My tone of voice might sound angry, but I'm really not angry", or "I'm trying to control a melt-down but it's leaking out as aggression, I'm so sorry". We're coming up with strategies as we go, and we are trying to be patient with each other.

Both of us have a lifetime behind us of repeated misunderstandings and multiple flavors of social isolation. We both have a voice inside that says "You're a failure and no one likes you". Both of us can get completely stuck with this thought, and it can completely block progress in conversations. So for our relationship to work, we face the continuous battle (anti-battle?) of self-acceptance.


Embracing what can't be changed  


Sometimes we're not on the same wavelength and just can't be. Sometimes we wish that we could change each other, and very often we wish we could change ourselves.

I sometimes cover my ears when he speaks because I suffer from the volume. Sometimes I interrupt him in the middle of a sentence to ask him to keep his voice down. He's somehow learned that this isn't criticism. It isn't easy for him to live with my sensory defensiveness, but he works hard to accept it for what it is.

He's often wished that I could merge better with his family and friends. I've been known to hide from Skype conversations, withdraw from social occasions, and decline invitations to events we were invited to as a couple. In the beginning, I wanted to hide my difficulties and he had no way of bridging the gap between me and his friends. He was being crushed between guarding my privacy and preventing misinterpretations. These days I'm less secretive, so he can simply say I'm too overwhelmed to visit, while I can try to show my love in other ways. This problem won't go away, and it'll always require continuous mindfulness, in terms of expectations, flexibility and planning.

I used to wish we could share each other's sense of humor better. But gradually that's disappeared. Somehow, we are both learning to appreciate jokes that we don't intrinsically enjoy, and we are learning to accept our own failures to "get it". We try to focus on sharing the joy instead of focusing on what we don't share. There's definitely a lot of hilarity in situations when overt-seeming jokes completely fly over the other person's head. I make fun of him and he makes fun of me. That's fun. And we both have other friends that are better targets for the type of jokes we personally enjoy.

Another example of mutual accommodation is how we take care of our home. I have executive functioning deficits and can get disorganized, mildly speaking. He has obsessive-compulsive traits and wants things spotless. Luckily, we both make a real effort to meet halfway (although towards the tidy end of the tidiness spectrum because it's way nicer there!). I keep my piles in one place and he makes an effort to not go crazy. And I happily clean the house as long as he reminds me.

It's different for everyone, but for us, verbal communication is our best tool for figuring out how to live with each other and ourselves. That includes our continuous process of deciding what can be improved, what can be accepted, and how to learn to embrace all of it.


Nothing's ever perfect, but that's okay


There is a lot to the ongoing mission of keeping a relationship alive and healthy. Finding the right person is bloody hard, especially when you're autistic. Once that barrier is overcome, it's a continuous journey of social engineering and self-acceptance. Nothing's ever perfect and it doesn't have to be. I think a relationship can be successful through the creative use of strengths such as loyalty, morality, empathy, or whichever assets you can find inside yourselves. For me and my husband, the future can't be certain, but so far... so good...

You ROCK!

Kajsa Igelström, Princeton University



Our new research study has only been out for a few days and we've already received >150 responses!!

We're absolutely delighted and amazed and impressed and thankful for your efforts! 

This is already a great response rate, but the more women we reach the better! We can make a difference together. Please keep sharing and contributing!

FIND STUDY SUMMARY HERE

P.S. Half a day later and we've passed 200!!! Keep going girls!

Tuesday, August 1, 2017

New Research Study: Calling Autistic Women!

The Extraordinary Brains Team is excited to launch a new study, which is designed specifically for adult autistic women (transgender/non-binary & self-diagnosed participants are welcome). We estimate that the questionnaire will take 15–30 min depending on how much information you provide, although it may take longer for some participants. 

Our aim is to understand female autism better, because it is possible that (cisgender) male-biased stereotypes may prevent many autistic women from getting support, recognition and diagnosis.

We look at two specific themes, which are thought to show particularly large gender differences: special/focused interests and so-called repetitive or self-stimulatory behaviors, often called "stimming". Girls and women may show fewer of these behaviors or they may look entirely different compared to boys/men.

You're eligible if you identify as an autistic woman (non-binary sex/gender welcome) and are 18 years or older. You can stop the study any time by closing the browser – if you do, the responses will not be recorded. The study is anonymous and we do not track any identifying information about you.

It's okay to respond in Swedish or Dutch if you prefer.

Closing date: Sep 16, 2017