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... 

 

When eye contact hurts – a personal account of a common autistic trait

Joost Wiskerke

For most people making eye contact with someone else is natural, effortless and painless.

Now, instead imagine that the other person’s eyes are two piercing laser beams. It probably won’t feel natural to look into them anymore. If you try, it will require effort, and if you do succeed – even for a short moment ­­– it will be painful. You wouldn’t want to experience that, right?

It may surprise you, but the laser beam analogy is actually not far off from how I experience eye contact, most of the time. It wasn’t until a few years ago, when I attended a couple of seminars given by autism researchers, that I learned that many autistic people have similar experiences. That’s why I wanted to write this post for Extraordinary Brains.

(FYI: I don’t have an official diagnosis, but I do strongly identify with several traits commonly associated with autism, including a tendency to avoid eye contact.)

Eye photo cropped.jpg

 

What I would like other people to understand about me

Many people may never think, or understand, the fact that making eye contact can be a real burden. These are 5 misconceptions that I commonly encounter:
 

1. I may be looking away, but I’m still there!

This is by far the most common problem. People think I’m not paying attention to a conversation unless I make eye contact. In reality, most of the time, my eye contact and my attention are completely independent from each other. My brain frequently doesn’t even really register what my eyes are seeing during a conversation.
 

2. I’m not trying to hide anything, and it’s also nothing personal.

When I don’t make eye contact, it doesn’t mean I don’t want the other person to see my eyes. It doesn’t mean that I’m ashamed of myself or that I'm trying to hide something. It also doesn’t mean that I dislike the other person. Guess what… I don’t even make much eye contact with my own wife! However, it can certainly mean I'm not entirely comfortable or that I'm using all my brain capacity for the ongoing conversation (but more on that later).
 

3. Please don’t judge the book by its covers.

My lack of eye contact may make me look a bit socially inapt and closed off on the outside, but on the inside, I’m a really kind and fun person who is social, intelligent and very loyal. Just ask my friends, colleagues and family :-). I’m convinced that it would be easier for me to meet new people if making eye contact happened more automatically. And I know of at least one concrete example where this type of misunderstanding threatened my academic career (I’ll get back to that topic too).
 

4. The phrase "You can learn to make eye contact, just practice" is not super-helpful.

Yes, it is true, but in my experience only to some extent. Despite years of training, I still easily forget to make eye contact when I talk to someone. At other times, I may want to make eye contact but fail to do so, or I do it too intensely and end up staring (it's hard to get it right!).
 

5. Moving your face into my field of view as a cue for eye contact isn’t subtle.

And I usually don’t think it’s that funny. Sure, using body language may be less harsh than straight out telling me. But honestly, when somebody tries to catch my gaze by maneuvering their head around, I usually first get confused, wondering what they're doing with their head. After that, I feel the same embarrassment and frustration that I experience when somebody verbally confronts me with my weakness.
 

Making eye contact: my perspective

Honestly, making eye contact is a nuisance to me. Calling it my nemesis may even be more appropriate. Despite years of effortful training, I can pretty much still only do it by willfully forcing my brain. And I rarely enjoy it. On the other hand, not making eye contact hurts too. A lot actually. But in a different way. I’ll try and explain myself.
 

When making eye contact doesn’t come naturally

Feelings of fear and anxiety are definitely part of the equation. In fact, for the longest time I was convinced that my problem was related solely to some form of social anxiety. But more recently I’ve come to think that social anxiety isn’t quite enough to explain my problem. I’ve been insecure about how to make eye contact my entire life, no matter who the other person is. The more I think about why I find it scary, the more I suspect that it has a lot to do with the fact that this particular social behavior just doesn’t come natural to me. It really just doesn’t!

Rather than being a fluent process, eye contact to me goes more like this:

The first crucial step is that I have to actively remind myself to look at someone. Then, as soon as I consider making eye contact, my brain will start ruminating: “Is this a good moment? If it is, for how long should I keep my gaze focused on the other person’s face? Is the other person reciprocating the eye contact? If not, why not?”. And this type of frantic internal questioning will continue non-stop for the entire time that I’m trying to make eye contact (irrespective of whether I succeed or not). It makes the act a real challenge! I can’t tell you how many times I’ve wished my brain would deal better with looking at faces and making eye contact.
 

Feedback and self-analysis have helped

Earlier in this post I described how feedback from people can be very confrontational. That’s not to say that I never want people to cue me though. It helps me deal better with eye contact. For years, one of my close friends has regularly been pointing out when I’m not making eye contact with her. She does it with a lot of compassion and patience. It has helped a little, just like years of training and analyzing myself have helped a bit.

I’ve also learned some camouflaging strategies. If often look just above or below the other person’s eyes. In group settings, I typically try to focus my gaze mostly on one person. The latter tactic combines particularly well with another oft-used social strategy of mine: Navigating social situations by using a “social wingman/wingwoman” (someone I know is socially more fluent and assertive than me). In spite of the progress, looking at people while talking to them is still not easy for me, and it feels unnatural.
 

Autism research made me realize why eye contact is exhausting and can even be painful

This brings me back to start of my story when I talked about how autism research has given me new insights about my problems with eye contact. As a scientist, I regularly get the chance to attend seminars about research conducted by others. While working at Rutgers University, two seminars by autism researchers made a particularly strong impression on me. The first talk was about how faces are an incredibly intense sensory input (eyes are probably the biggest contributor here!), and about how this can be a problem for autistic people who can be hypersensitive to sensory input. In the second talk, the speaker mentioned that autistic people often described eye contact as almost being physically painful. Both of these stories resonated with me.
 

Understanding my own deficits better

I’ve long known that during a conversation it’s much easier and calmer for me to look at stationary objects – floors, walls, ceilings or skies are particularly good for this purpose. Listening to those seminars a couple of years ago made me understand that the reason why eye contact is incredibly exhausting and hugely distracting for me is not just that it doesn’t come naturally, but also that it constitutes a massive sensory input that floods my brain.

Faces – and particularly eyes – have so many visual details and convey so much information! They move a lot too! Add to that my brain’s tendency to get hyper-focused on random details, and its limited capacity for multi-tasking… The problem becomes obvious. After all, the brain has a limited energy supply. Looking at people while they are speaking is one thing. That doesn’t seem to exhaust my brain too much. While talking myself, looking at someone is a lot harder. In a cognitively-intense or emotional conversation, there's virtually no way I can cope with eye contact. The problem gets magnified if the other person is unfamiliar. My brain just doesn’t have the capacity to process it all.

closedeyes.jpg

I struggle with eye contact, but I also know it’s a big deal in social communication

I admit that I often have had (and continue to have) thoughts along the lines of “I should just give up, it’s too hard to make eye contact”. Or in my frustration I may think something like “why is it such a big deal [to others] anyway whether I make eye contact or not?! Can I not just be accepted for who I am?” At the same time, I know that acceptance from others doesn’t solve all problems. Body language – including eye contact – is simply too important in social communication.
 

Making eye contact in my professional life

I think one area where I most often wished for some level of acceptance is at work. As an academic scientist, I sometimes feel hampered by my inability to naturally make eye contact during meetings or while I’m giving a presentation. Unfortunately for me, salesmanship and being good at presenting work are increasingly valued skills in modern-day’s highly competitive scientific community. At least I can compensate my weakness in this area with making strong presentations and knowing my s**t. Compensating is much harder while “networking”, e.g. mingling with other scientists at a social event. Like in most other professional sectors, networking is an integral part of advancing one’s academic career. Here, I feel my limited capacity to make eye contact is a real handicap (the fact that making small talk isn’t really my strong suit doesn’t help either). And this handicap can sometimes have severe consequences.
 

workplace-1245776_960_720.jpg

How a lack of eye contact almost ruined my academic career

Years ago, I was interviewed by a committee for a prestigious program in neuroscience at my university. I had explicitly been asked to apply for the program since I was one of the top students in my year. Job interviews are a nightmare for most people, and even more so for autistic people. This interview definitely felt like a nightmare to me! I couldn’t make eye contact at all and felt horrible throughout it. Afterwards I beat myself up for doing such a poor job. A short while later I found out that one of the professors in the committee was hesitant to accept me into the program because I had come across as socially immature and therefore wouldn’t be a great “poster boy” for the program. I only made it into the program because my mentor convinced the committee to let me give a presentation about the research project I had been doing in his lab. This happened in 2005, but it still hurts that that professor initially judged me for my social skills rather than my academic ones.
 

Making eye contact can enrich social interactions

In my personal life, I luckily get a lot of acceptance from the people around me. But that doesn’t solve all my problems. I’m fully aware of how useful eye contact can be in social interactions. And powerful! I’ll never forget how I once made an elderly woman cry because I made eye contact with her for the first time during her final session in our psychotherapy group. My eyes told her that I cared about her. I also know that omitting eye contact makes me miss a lot of emotions and subtleties in people’s words. I do think that missing body language can at times be a strength and make conversations easier (at least when the other party communicates in a similar way) – when you rely on verbal communication alone, there is less to misunderstand. Much more often though it makes me miss jokes, or it prevents me from accurately identifying others’ emotional states. I’ll give you another anecdote that nicely illustrates that last point.
 

couple-love-sunset-silhouettes-160764.jpeg

If I had looked into her eyes…

Years ago, I completely missed the fact that a girl was in love with me. For months! I had been interacting with her regularly, but just didn’t realize there was anything more to our conversations than them being enjoyable. Until one day, when we walked into each other while I was out for lunch with a friend. When the girl left our table after a couple of minutes, my friend – who didn’t know the girl – said it was super-obvious from the way she had looked at me that she was in love. I didn’t believe it. Surely I would have seen signs of it before, right? Of course, it turned out my friend was right. And although I couldn’t reciprocate the girl’s feelings, my confidence still got a nice boost!
 

How looking at faces currently helps me understand Swedish

I’ll end this blog post with a completely different advantage of looking at people that I recently discovered. Since moving to Sweden last December, I frequently try to follow conversations in Swedish. Although Swedish is somewhat similar to Dutch (my native language), it isn’t easy for me to understand it. However, I’ve noticed that it really helps to pay attention to people’s bodies, and particularly their faces. Without this added visual information, my brain understands a whole lot less Swedish. Don’t get me wrong though – it’s not like it’s any less stressful or exhausting for me to look at people who speak Swedish. Or that I’ve all of a sudden started making a lot of eye contact in Sweden. As a neuroscientist, I simply think it’s interesting that my brain seems to prefer to avoid looking at faces during conversations in Dutch or English (languages I’m fluent in), whereas it appears to really benefit from the visual input when I try to listen to a foreign language.
 

The take home message of my long story

Eye contact will probably always remain a struggle for me. In every conversation I’ll have to choose whether or not to engage in it. But I know there’s a lot to gain from moments of successful eye contact, so I’ll keep trying. At the same time, I hope for understanding from other people when I do look away.

 

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! 

We'll keep you posted here (in the News category) about the outcomes of this work! 

(You can help us with publication costs and subject reimbursement on our Donation page.)

 

Is Camouflaging a Balancing Act?

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

balancing.JPG

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?

My name is Francine Russo, and you can get in touch with me by filling out the form below. 

You can also reach me through Extraordinary Brains by emailing Kajsa at kajsa@princeton.edu – she'll forward the details. 

Please provide your first name (last name is optional)
Please provide your first name (last name is optional)

Autistic voices on the Autism Quotient (AQ) test

Kajsa Igelström, PhD

If you're autistic or suspect you are, you've probably encountered the AQ test. It's widely publicized as an online tool to get a "score" reflecting autistic traits. It's not diagnostic – your score will not tell you whether or not you are autistic. On average, autistic people do get a higher score than non-autistic people, but 50 questions can never capture the complexity of the spectrum and some autistic people score pretty low. Many autistic people like the AQ, and some feel it helped them realize they were autistic and understand themselves better. These positive views aren't represented in this article, simply because we haven't received much positive feedback on the AQ in our studies. (I'd love to see comments below the post pointing out the positives to make it more balanced!)

We have included the AQ in many of our questionnaires because it provides a recognized measure that helps our studies "fit in" in the scientific world. It can also identify major problems, like when we did a pilot study that returned a completely unrealistic AQ score distribution. We didn't know which of the participants were actually autistic, but we didn't trust our recruitment success, so we discarded the data and changed to a more robust recruitment strategy. Even though the total score is in no way diagnostic, the test also returns some sub-scores, some of which can be relevant for correlation analyses. The AQ has limitations, but we know about them – and so do other scientists in general. 

I'm writing this post, because the AQ has triggered negative reactions from some of our participants. I won't write a research paper on it, because an acceptable scientific analysis would require a more diverse population and specific questions. But the reactions are illuminating and deserve to be heard. 

 
The_Scream.png

Context-dependence

A logically oriented mind is more likely to see all the complexities. This the main topic that participants touch upon. Many AQ questions are context-dependent. While a non-autistic mind might be able to make a rough approximation and pick a response option, many autistic minds get stuck. The answer always seems to be "IT DEPENDS!". This can be especially upsetting when you know someone is attempting to probe autism – a huge part of your life and yourself.  

Here are some examples of context-dependent questions that causes problems for many of our participants: 
 

Q1. I prefer to do things with others rather than on my own. 
 

(Response options are Definitely Agree, Slightly Agree, Slightly Disagree, and Definitely Disagree)

In case you have a less literal interpretation of phrases, I'll break this question down for you. First, there is no modifier like "I often prefer..." – for a literal mind, this can be hard to get around. Second "prefer" – a preference for being alone may be caused by something other than a true preference (e.g. social interactions are difficult, but still desirable). Third, "things"! This encompasses EVERYTHING. Fourth, "others" – that encompasses EVERYONE. A detail-oriented mind may see all activities and all people, and get lost in a maze of complexities. I'll let the participants illustrate.  

QUOTES:

"I would love to have lots of friends and be able to engage with people but I often feel trapped inside my own head and can't make a connection with others." 
"I would prefer to do things with others but it's easier to [do] them alone." 
"I want to be sociable but I don't know how to do it." 
"One of my biggest difficulties is realizing and remembering that others do not think like me, that they are often looking out for hidden deceptiveness and are deceptive and manipulative themselves and will /.../ believe that there are manipulative or insulting messages in perfectly innocent actions and words. They make life unnecessarily complicated and negative. /.../ I have really thinned out my group of friends in recent years. Most people are more trouble than they're worth and take up too much time and energy."
"Do I prefer to do things alone? It depends what the thing is! I prefer to have a crap alone. I prefer to have a conversation with other people. /.../" 
"I prefer being on my own than with other people, unless the other person is someone I'm very comfortable with /.../"
"I like talking to my sister and my partner, and when I had a few friends in school I liked talking to them, but it's really hard for me to find people who are easy to talk to and most people misunderstand me a lot and being around them makes me feel bad about myself and get tired."
"Weird survey. Too many variables, not exact enough. I enjoy SOME people, some social situations, but your questions group them all together."


 

Q13. I  would rather go to a library than a party.
Q24. I would rather go to the theatre than a museum.

These two questions are similar and rather easy to see the problem with. You are given a choice of two venues. The question requires you to make some type of generalization, say, by visualizing the library as a peaceful place where you're free to wander around, and a party as a sensory chaos with huge social demands, and – based on that – analyze which you prefer on average.

Autistic minds are often incredibly good at seeing all the details. A library can be boring if you aren't in the mood for reading or already have enough books at home. Perhaps you use e-books. Perhaps the lights in the local library are too bright. Perhaps you've been alone for too long and actually feel like a social occasion. But then how you define a party? There are so many kinds of parties... We can go on and on!

Autistic thinking styles commonly involve precision. The questions aren't precise, so how is it possible to give a precise answer? If you also feel that it's important that the person analyzing the responses actually understands you, what do you do? You're intelligent enough to guess that you'll get a higher "autism score" if you pick library and museum – but in many cases IT DEPENDS... This really isn't nit-picking! It just reflects a tendency for certain types of minds to see details and complexities. Again, let's listen to some reactions. 

QUOTES: 

"Which party? I hate weddings. But the parties my disabled friends throw are great."
"It would depend where the party is and who is going to be there. I don't always hate parties."
"/.../ I prefer going to a museum than a theatre but I do love to go to the theatre for a performance I expect to enjoy and which will absorb me enough that any problems with the environment or other people will not distract or disturb me /.../ [T]he museum would also have to be one I'll find sufficiently interesting! /.../"
"Which museum vs which theatre? I hate art museums but love history museums. I love musicals but hate Shakespeare."
"Very difficult to answer! Answers would often depend on circumstances. e.g. if i would prefer theater or museum depends on museum." 


 

Q40. When I was young, I used to enjoy playing games involving pretending with other children.

This one probes imagination (which some autistic people have lots of and some have less of). There can be many complications in answering the question. The quotes below show some participants reason around this. Again, the answer was "it depends...", and they felt conflicted in picking an answer because they saw and appreciated the complexities. 

QUOTES: 

"I wanted to be included and feel part of it, but often wasn't. I'm not sure I really knew what to do."

"I did enjoy pretending games but I liked to be in charge."

"Really enjoyed imaginary games as a child but would reenact scenes from books or films rather than inventing new things."
"My pretending games were often played with my childhood friends. I didn't play with new kids much. It was easy for me to play with my steady childhood friends because they understood me. I was afraid of strangers."
"I liked playing imaginary games with my brother and other kids where I was the oldest and could dictate the terms of the game."


 

Camouflaging complications

I cannot emphasize this topic enough: Many autistic individuals have learned to work around their weaknesses by compensation and camouflaging. In our AQ comments boxes, it comes up frequently and is often eloquently expressed. 

If you do a lot of camouflaging, some questions in the AQ require you to choose whether to respond in accordance with your outward appearance, or in accordance with how you'd intrinsically function if you were allowed to relax and be yourself. While some people don't mind this and simply answer according to their "natural" behavior despite being able to camouflage, this choice can be difficult for many, and also be very emotionally upsetting, as much of the feedback to us showed. (In addition, many people take the AQ before they have gained this type of insight.) 

Please listen to these women and transgender individuals. 

QUOTES: 

General comments about the AQ: 

"Scale should include how often one thinks about, practices, or puts in energy or effort to mask, or pass. THIS is very important. I pass well, but have schooled myself."
"/.../ When you've only realized you're autistic later in life and had to find so many ways to adapt socially - how can you answer these questions without denying part of yourself? Either your autistic self or the skills you have learned which have had a masking effect - enough so that you didn't know yourself. /.../"
"/.../ Lots of them are learned skills - my ability to read people is actually brilliant pattern recognition and is real as anything. I am easy to coerce though. The other main point is I spent my entire life habituating myself to be as flexible as possible. /.../"
"Some of the question asked don't take into account that I can do some of these things but only because I've practiced them over the years and that I sit and observe any situation first and only then, when I've worked out the pattern, can I participate, often by playing the right role."

"I have gotten very adept at passing as neurotypical in most social situations, but I know I put an inordinate amount of conscious effort into remembering the lines to "scripts" people expect, reading people's tone/facial expression and constructing appropriate responses. It's exhausting /.../. I compulsively censor myself and am terrified of making a social misstep; I am afraid people will not like me anymore /.../. I hide certain aspects of my personality and play up others to seem quirky, endearingly awkward, and relatable."

"I feel like I struggle to communicate my challenges because medical/psychological questionnaires seem too open ended and subjective. /.../ Women are expected to be friendly and engaging in conversations. One on one in a quiet clinical setting, I can appear normal. I have been so socially sanctioned for being different that I struggle to be myself in front of strangers. Then I am doubted when I talk about my many struggles. Growing up, other kids, especially girls, made it very clear that I wasn't acceptable, then adults saw me as mature because I was smart and could hold mature conversations. My inner screaming was never heard. /.../"
"There are a number of things this questionnaire asks about which I have learned to be better at over time, that do not come naturally to me but I have had many years to rehearse them and find them less difficult, though often still a strain, e.g. meeting new people (rehearsed approaches and masking), recognizing when someone is bored by my conversation (hypervigilance)."

 

Some specific examples: 

Q7. Other people frequently tell me that what I’ve said is impolite, even though I think it is polite.
Q39. People often tell me that I keep going on and on about the same thing.

"/.../I've learned how not to be offensive/impolite by counting in my head to let enough time pass before I speak. /.../ So by employing my coping mechanism, people end up not telling me I'm impolite so often. Thus the response to that question would be that no, people don't tell me I'm impolite but that's only because I intervene. It takes a ton of work and that's what should be measured here, not the end result."

"Some of these would be masked over. /.../ going on and on about a subject; I did when younger, but the response from peers was that this was wrong and I was terrible to be around. I am afraid to speak about my own interests now."

 

Q38. I am good at social chit-chat.
Q48. I am a good diplomat.

"Some things have changed over time. I learned how to make small talk at work. /.../ You (try to) adapt."
"Some of these answers have changed over time as I have developed coping strategies that make it now easier to do certain things. But I am always aware that my way of approaching things is not the same as other people's. So for example I now CAN make small talk but I'm not generating it spontaneously, I'm going through a script in my head that I've memorized."
"I've gotten lots better at social chit chat /.../ since learning I'm autistic, because I can look at these things as set, finite skills to intentionally learn rather than just things people either can or can't do."
"/.../ [I]f I follow a script I can manage it but naturally I'm very quick to anger and highly opinionated. So....I'm not a natural diplomat but I can keep up an act short term if I follow a script."

 

Q18. When I talk, it isn’t always easy for others to get a word in edgeways.

"/.../ I limit my speaking time on a topic to a rough number of sentences per turn so people don't tell me I go on and on. It's not that I don't WANT to give all I know to people who don't know but I'm also aware that not only do they not want it but I've learned that my knowing more makes them feel bad about themselves somehow. So I modify my behavior to limit unpleasant responses from other people because that's stressful too... but I'm still me, inside. /.../"

 

Take-home messageS

for autistic people

If you struggle with the AQ, you're not alone! Your mind isn't necessarily compatible with this type of questions. It was designed before we knew much about all the different manifestations of autism, and it has been overvalued as a clinical tool on websites or by people who didn't know better. The creators never meant for that to happen. If you see it in any of our studies, don't worry about having your answers over-interpreted, or that we're going to think you're any less autistic because you love reading fiction or hate numbers. And after finding out how negative many of you feel about it, we'll think carefully about whether or not we need to use it. 

For Scientists

Let't try to be aware of how difficult and frustrating this questionnaire can be for autistic people. It can trigger feelings of having the autism diagnosis tested or questioned (a diagnosis that might have taken decades to obtain), and it can trigger anger because it seems to probe for stereotypical views of autism (e.g. a fascination by dates or numbers). Given the emotional triggers, the forced-choice format and requirement for answering all 50 question can make it very confrontational, painful and tiring. 

For the future

It's important that questionnaires meant for autistic people are designed in a way that's compatible with a wide variety of autistic "thinking styles". Ideally, scientists and autistic people could collaborate when designing questions and response options. Autistic people are great at discovering problems with questions, because they often have a low threshold for reacting to a lack of clarity. And in our experience, putting some extra thought into wording actually benefits everyone.
 

Footnote: We've changed spelling to US English to make it less obvious where participants are from, and corrected some obvious typos.  

 

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. 

 

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.

 
frog.png
 

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 or too rigid. 

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. 

 

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

 

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.

sunflowers.png

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...

5 ADHD-Doubters You Might Encounter in College

art_blair_arch_w_signature.png

Some people just do not understand the concept of neurodevelopmental conditions. To be fair, I’m diagnosed with one, and have been studying them for three years, yet I still find them hard to wrap my head around. It still hurts, though, to feel misunderstood.

Here are five hyperbolized archetypes of “ADHD-Doubters” that you might encounter in college. They are conglomerations, exaggerations, and expansions of my personal experiences.

 

1. The Ignorant Friend

The most common doubter you will encounter. Your diagnosis does not make sense to your Ignorant Friend. Maybe you were acquaintances for a long time before he eventually found out that you have ADHD, and his picture of ADHD does not fit with his perception of you. He asks you some offensive questions about it – questions which make it clear that he thinks your diagnosis is merely an exaggerated reaction to “being a kid”. You’re disappointed, but you understand that he can’t see into your head. Depending on the friendship, you either arrange a heart-to-heart and try to get him to understand, or else accept the limitations of the friendship and never bring up ADHD again.

 

2. The Condescending Significant Other

A painful manifestation of ADHD doubt is when another person attributes ADHD symptoms to your personal character. In the context of romantic relationships (or even close friendships), this misconception can be toxic. Beware of the Significant Other who views you as someone to be “taken care of”. If you detect this sentiment, a serious conversation is needed. If the conversation doesn’t stick, evacuate immediately! Few things are more disempowering than a partner who views you as incompetent.

 

3. The Competitor

One night, you’ve invited friends over for a small party, and the conversations get personal. When you share that you take medication for your attention deficit, she suddenly oozes bitter jealousy. This ADHD-Doubter wishes she could take Adderall because she is trying to get into law school and needs to maintain her GPA. She seems to have concluded that since you are not visibly or catastrophically “disabled”, your are gaming the system by taking Adderall. You shrug, “Well, the doctor says I need it,” then quickly change the subject.

 

4. The Puritan Roommate

Freshman year, you are crammed into a dorm room the Dursleys would have reserved for Harry Potter. It’s a new space, new routine, new everything, and you find it disorienting. Your rigid-minded roommate believes that efficient adaptation to college simply requires self-discipline and hard work. In many ways, you envy him, and for many reasons, he resents you. The main point of tension: everything on his side of the room is at a right angle, while you have a more, um, “intuitive” system. Not wanting to be disrespectful (or perceived as such), you work to maintain a tidy living space. You apologize when you make mistakes. You might stay friends with the Puritan but you do not room together next year.

 

5. The Benevolent Professor

When having a deep talk with your favorite Professor about your future, you mention that your experiences navigating life with ADHD have really shaped you as a person. She is incredulous. “You have ADD? But you’re engaged during class.” You explain that you’ve learned how to compensate. Plus, you love her class, so it’s easier to pay attention in it. From her praise about “growing up”, “overcoming ADHD”, or “getting through it”, you realize she does not understand the idea that ADHD will always be a part of you. 

 

Navigating college life with ADHD is going to lead to some misunderstandings. Sometimes you meet people whose brains don’t understand your brain. When this happens, it can hurt to feel misunderstood. But having an extraordinary brain is so worth it.

© Maggie Pecsok, 2017

 

Our struggles are real

Kajsa Igelström, PhD

One of our questionnaires in early 2017 ("The Strengths and Weaknesses questionnaire") contained this question: 

"What do you wish other people could understand better about you?"

We got comments from 103 autistic people, 15 of whom were male. (If you're a man, please consider signing up for study invitations or following our FB page – we need you too!)

IMG_20170625_175042.jpg

The participants were all adults recruited mainly in closed Facebook groups. Although their opinions were somewhat diverse, some very common themes emerged:

1. Our struggles are real

Since our participant pool was not intellectually impaired, many were able to hide their difficulties in daily life. This is often especially true for autistic women, who can be good at "camouflaging", i.e. imitating non-autistic behavior despite their very different cognitive style. In fact, intelligence can be a serious barrier in getting support, for both men and women. How can a person who is, say, a parent of two, or employed full-time in a skilled job, have insurmountable challenges with household chores or going to a dinner with friends? Or how can someone who seems completely normal be on disability leave or receive other support measures?

For autistic people without intellectual disabilities, an uneven profile of skills, strengths and weaknesses is reality. Many can cope with challenging situations for a limited period of time without any noticeable problems, only to melt down afterwards or sleep for hours to recover. The harsh side effect of being intelligent and able to camouflage can be a feeling of utter isolation. When difficulties or needs are questioned by non-autistic people, or when there are comments like "we all have these problems" or "get over it", an already challenging life can become unnecessarily difficult. Many expressed that they wished people could understand how exhausting some situations are, and how hard they have to work just to function in everyday situations.
 

2. We're different, not worse

Bridging the gap between the cognitive styles of autistic and non-autistic people is a two-way mission. It's often discussed how autistic people could get trained to function in a more neurotypical way, but when it comes to non-autistic people's attitudes towards autistic people, few would talk about teaching neurotypicals to think more like autistic people.

But isn't that an interesting thought? That, in a way, you could say that a non-autistic person lacks the theory-of-mind function necessary to empathize with autistic people?

I phrased that in my own way, but many of our participants expressed that they wished to be seen as different, not deficient. Many autistic individuals without intellectual impairments – and an increasing proportion of non-autistic people – have started to think of the "autistic brain" as a natural variation that simply represents diversity. Opinions differ, but a large proportion of our participants expressed that they wanted to be seen as different – not worse.

This theme could be seen in a few different contexts within the responses. Some participants who preferred not to socialize much wished that others would understand that this doesn't indicate that they are selfish or mean human-beings. Some mentioned that they wished that their inability to do certain things would be more okay with others – that the limitations could be accepted as a difference rather than a bad thing.
 

3. We're much smarter than you might think

It's easy to underestimate someone who isn't super-expressive when it comes to body language or articulating emotions. Similarly, those who struggle to process certain kinds of information, like verbal instructions, might be seen as slow or inattentive. It's common for autistic people to have some of these challenges while simultaneously being extremely skilled at processing information in other ways. Many of our participants expressed the wish that others could see and understand their intelligence and other positive qualities. Many felt that neurotypicals often didn't make an effort to really get to know them beyond the first impression.
 

4. Our social discomfort is not personal

There are many things that can stress an autistic person out while being around a non-autistic person. It might be a noisy environment that's exhausting due to sensory sensitivities. Perhaps it is distressing to have a conversation. Perhaps the energy reservoir is empty because of an earlier trip to the grocery store.

A non-autistic person would generally interpret palpable distress, the lack of a smile or a less-than-fluent conversation as a sign of dislike or inter-personal issues. Similarly, if an autistic person pulls out of a social event in the last minute, or says no to an invitation, it is very easy to take it personally.

These examples were common in the responses, and participants expressed that they wished that others could understand that their social awkwardness or avoidance often had absolutely nothing to do with the person they interacted with. Autistic people can get awfully misunderstood when they seem dismissive, discouraging or even angry, when they really are just low on energy or unable to produce the physical social cues that the non-autistic person needs.

This requires neurotypical people to use some kind of cognitive work-around. They need to put aside their intuitive mind reading skills and consider possible alternatives. And every autistic person is different, so – again – getting to know them properly is probably the key to learning to communicate effectively.
 

5. We're not robots

Autism is associated with a lack of empathy. But both male and female participants with clinical autism diagnoses articulated very strongly that they wished that others could understand that they are kind, honest and do care for other people. Autistic people described a huge disconnect between the way they felt inside and what they were able to express and communicate.

One woman said her facial muscles just didn't behave like others': "the way they make my face look may not always reflect the way I truly feel about something on the inside". Others described how they felt emotions and empathy strongly and deeply, but lacked the ability to express this, both verbally and non-verbally.

Some people who had trouble with eye contact or understanding body language also expressed that missing social cues does not make them less empathetic. They just have a greater need for verbal, clear communication about what is going on inside the other person.
 

6. We mean EXACTLY what we say

Neurotypical people speak in code language. There can be hidden messages within anything that is said. A non-autistic person may be quite fluent in decoding what's said based on context, social norms, body language or tone of voice, but autistic people are often not.

I was a little surprised to see how common this theme was in our responses, but of course it makes complete sense. The literal thinking that's often associated with autism can take many expressions, from challenges with metaphors or sarcasm to general problems with following conversations. Indeed, some participants wished that others could understand how difficult it was for them to understand social communication, and some wished that their friends could help out a bit, by explaining jokes and making sure to be clear.

But what came out strongest in this particular questionnaire was that many autistic people strongly prefer straightforward communication without any hidden messages or hints. Of course, an honest, logical and literal communication style could be seen as a very efficient way of communicating. There is no doubt that indirect communication between non-autistic people cause frequent issues and pent-up emotions caused by misinterpretation of "between-the-lines" messages.

What autistic people in our questionnaire wished that neurotypicals would understand, was that they mean exactly what they say and nothing else. A frequent experience and a cause of great pain was that non-autistic friends or co-workers would respond to things they hadn't said. People would unpredictably react to messages that they assumed were hidden within the sentence.

Some examples:
 

"Why /.../ is the world built on lying? I don't want to lie. I don't want anyone to lie. It is such a sick point of view for NTs to think lying is normal and they require it of everyone."
"I genuinely have no agendas, no subtexts, and when I say something, I only mean what I said, without any implications, or unspoken intentions."


Navigating this minefield where anything you say could be interpreted as something completely different shouldn't just be the autistic person's responsibility.
 

Other attitudes

The themes above were the most dominant, but of course many mentioned other things, like wanting their sensory issues to be understood, stimming to be socially okay, or melt-downs to be accepted for what they are.

We also had some responses that overtly deviated from the patterns above, like these:
 

"I don't think they can. I think it's my responsibility to learn how to adapt." (woman)
"/.../I really just prefer being alone. I'd like people to understand that I am happy alone." (woman)
"They don't have to, acceptance is the key." (woman)
"I couldn't care less what other people think or understand, it means absolutely nothing to me." (man)
"I used to but recently not bothered, age closes many gaps." (man)

 

Thanks for reading!

Coming soon is a questionnaire about stimming in women, as we aim to reach a better understanding of autistic females. With a similar goal, we'll put out a questionnaire about experiences of childbirth for autistic women within a couple of months. Other studies are in the pipeline too!

Sign up here if you want invitations when a study comes out (a few times per year).

 

My brain just won't do it: Autism and sensory chaos

I've struggled with this for as long as I can remember, yet almost nobody knows. I've become an expert at compensating for it. But every time my sensory processing deficits leak into my daily life, I face another battle to regain self-acceptance. 

I have autism, which makes me unique, loyal, honest, and objectively a pretty cool person. No seriously! But one thing I really wish I could change is the constant chaos caused by my sensory hypersensitivities.

Red-noise-fail-05.jpg

My brain isn't efficient in deciphering the world around me – it does so very slowly and not in real-time. In a familiar environment I have few problems. But introduce me to a new room, and I will most likely struggle. 

It's alright if my interactions with the new environment are straightforward. Say for example that I'm going to a meeting with a new person in a new building. I can use a map to find the building and I can find the room as long as it's in a logical place. Upon entering the room I will quickly establish the location of the visitor's chair, and that's often all that I need.

But say instead that I'm going to a social event at an unfamiliar venue. Upon entering, I must quickly scan the environment so that I can figure out where to hang my coat, who to walk up to, and where to get a drink. But as soon as I walk in, sensory inputs bombard me from all directions. There are tables, windows, glasses, smells, shoes, voices, dresses, people, music... 

I'm unable to process this into meaningful information like "walk towards the couch and say hi to Ryan". If I can buy myself "processing time", say, by chatting with a good friend while looking around the room, I might be able to behave like a regular person for the rest of the night. But if I don't get this extra time, or if I'm simply too tired, I can be so at a loss for context that I leave unannounced or break down and cry in the bathroom. May I introduce the infamous Autistic Meltdown, which must be hidden at all cost. 

I'm intelligent and emotionally pretty well-functioning. I don't have social phobia, and I'm not even particularly shy. If the circumstances are perfect and I can compensate well, I can give the impression of being happy, social, strong, emotionally stable and fun to hang out with. I struggled greatly with social interactions when I was younger, but these days I can do it, through well developed compensation strategies – many of which have formed subconsciously over the years. 

Yet, in every new social group I join, I tend to gradually build up a reputation for being quiet and slightly neurotic. The discrepancy can be confusing even for me, and it's painful to be regarded as shy or antisocial when that's not what I am. I just need things to be predictable and quiet! 

I am just autistic. 

Often, my symptoms of sensory processing deficits are subtle and without much consequence, such as not remembering places or details because I never actually took them in. Other times, it can get really debilitating. For example, when I woke up the first morning in a B&B, I knew I had to walk down the stairs, find the breakfast area, figure out how to serve myself breakfast, and presumably interact with the host in some way. I stayed in my room for several hours longer than I wanted, because I knew it would be such a challenge. I wasn't shy. It was just an absolutely overwhelming sequence of events to orchestrate. When I went to the university library for the first time, I sat down in an armchair right inside the entrance, and used my smartphone to study the library website for floor plans and other clues, before I felt ready to lift my gaze and begin to make sense of the physical environment. In college, I consistently avoided departmental functions. In my private life, I've generally – and sometimes subconsciously – found excuses to avoid social events. Eventually most people stop inviting me, which is both a relief and a source of immense pain. 

Most of the time my mentality is: "What's the worst thing that can happen?" I do keep pushing myself to do the things I struggle with and I've had quite an amazing life as a result (though perpetually exhausting). But truth is that I do fear the irreparable social situations that can result from not being able to make sense of the environment. 

Take this example from my early childhood: We were leaving the swimming pool and walked through the exit gate. Even though I could see another person approaching, I turned around and determinedly closed the gate right in front of them, then walked out of the building. Mom was upset and told me that people had been whispering and wondering what was wrong with me. I felt immensely embarrassed and stupid. Even though the sensory information had reached my consciousness, it wasn't synthesized into anything meaningful, such as "A person is approaching; therefore, do not close the gate". 

I have many unpleasant childhood memories of moving through a chaos of anonymous inputs without meaning, and even stronger memories of the social consequences of some of those moments. In my adult life, it has been even worse in some ways, especially in my 20s when I was still trying to go to social events and kept blaming myself very harshly for the social shortcomings that resulted from my brain's regular failures to compute the world.

Then there are the little things that don't matter quite as much. I can't cope with team sports and I find it hard to cross the street when there is traffic. When I tried to play laser strike I got so overwhelmed that I hid in a nook and cried. If someone gives me verbal instructions, like "grab a fork from the second drawer to the right of the fridge", I generally have to ask for a couple of repetitions while trying to figure out what it means. I find it hard to understand movies and most of the time I end up with no recollection of them afterwards. I watch them over and over to compensate.

I've found numerous little tricks for creating that little window of extra time that I need to process novelty. The main themes are: 1) preparing myself by visiting a venue before an event, 2) avoiding messy places, and 3) using my strengths to compensate. For example, if I'm going to get hands-on training on a new laboratory technique, I find a way to go to the room beforehand and map out everything that's in it, making sure I know how every piece of equipment works in detail, and finding out everything I can about what I'm about to learn (Google is my best friend). Then, in the training session, I am faced with minimal novelty and have a fair chance of avoiding a meltdown. This is a crazy-sounding approach, but it works, and the bonus is that I become a technical expert and efficient troubleshooter. The downside is that people think I'm obsessive-compulsive or insanely overambitious. 

But truth is that I'm really just trying to survive.

It's not fear. It's not something that I can "get over". My brain just won't do it. Sadly, the most successful strategy for dealing with the social consequences of it is to be alone, which is a strategy I sure have implemented throughout most of my life. When I make friends, I quickly find myself in untenable situations where I no longer can comfortably avoid parties or no longer can hide the disability. So I avoid making casual friends, and I pretend to be much more antisocial than I really am. 

But things have gotten better! As an adult approaching middle age, I'm beginning to just simply explain that I have sensory processing problems and therefore have some limitations. To my surprise, there have been no adverse reactions. It's okay with people if I go out for a quiet walk in the middle of a party to regroup. It's okay if I ask colleagues for some extra time to process new information. Learning to simply explain things without drama seems to be the key to acceptance and inclusion for me. Implementing this strategy and forgiving myself for failures is a continuous process though. 

I will always have this limitation, but I'm discovering that social isolation is not the only way to live with it. 

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. 

 

Voices on compensation in autism

by Kajsa Igelström, PhD

We put out some small questionnaires in January to March, 2017, to see if we could get some information and inspiration from the autistic community about various issues. In general, the open-ended format was not ideal for most people, so we don't have enough data for formal publication. This is a little informal report on The Compensation Questionnaire. Even though only four women responded with detailed accounts, they were interesting and generous and I wanted to write about them here. 

We asked two questions: 

  1. Please tell us if/how you use personal strengths to compensate for any challenges accompanying your autism. 
  2. Are there any autism-related challenges that you find difficult or impossible to compensate for? 

 

Compensation strategies

The four women lived in the US or Finland, and were between 23 and 61 years old. Quotes were edited for grammar or spelling if needed. 

A few themes shone through all their responses, in particular the need to FIGHT, all the time, to function in the world. Other themes were the use of structure and discipline to manage life and the use of intelligence to compensate for weaknesses. 

 

A constant fight

Several women expressed that life can be a real struggle, and that they need to apply all their strengths all at once to get by. This is something that's increasingly discussed: the ability of autistic women to mask, or camouflage, their deficits. They can be so incredibly good at it that they escape a sorely needed diagnosis, have their diagnosis questioned by doctors and even family members, and often use so much energy to function "normally" that they are constantly stressed and exhausted. This use of camouflaging, while useful in some ways, can be a source of alienation and might even contribute to comorbid mental illness. 

"Certainly I use my intelligence, creativity, detail-focus, skills, knowledge, memory, visual thinking and hyperfocus to solve my problems. Aggression is my number one tool to get things done and to survive. But it has a high energy cost. It is not fair that I have to use it to survive in daily-basis. /.../ It surprises me every day that I haven't 'lost it' if you think of how difficult my life is. I go through enormous amounts of of suffering and compensating and I am still going on and trying... Everything seems to fall apart and I am still trying." 
"Most of the time I characterize it as 'endurance.' I put it in terms of self-discipline and fortitude, which I use to contain and manage distress. I consider myself extremely self-reliant." 

If the compensation strategies break down, the women may find themselves in a complete meltdown. Here is a poignant description from one of our participants: 

"There are some complete breakdowns in the way I process information. If I can't find a work-around, or come up with some rule of thumb for certain types of problems, then I lose coherence. This is the primary cause of what few meltdowns I have. I call it 'losing the universe.'" 

 

Structure, hyper-focus and discipline

Even though several women described symptoms indicating difficulties with executive functioning, a co-existing strength often seemed to be a strong ability to create structure and rules. This is a well-known strength of autistic people, and also contribute to the tendency for strong interests that – to the neurotypical person – might seem repetitive or restrictive. These interests and behaviors can of course be turned into an asset, as several of our women described quite unequivocally. 

"My ability to hyperfocus can't be switched on or off on demand, but when it does kick in, it allows me to actually focus enough to get something done or learn versus being distracted by something else. And while my desire for sameness can get a little repetitive, it allows me to perfect cooking recipes. My desire for rigid rules and structures can make parenting stressful, but because of that I am an awesome driver."
"I can get really interested in topics and compile lots of information about them, which can sometimes come in handy (particularly as a graduate student). /.../ I am happy to take on repetitive or organizational tasks that others might find boring, so I can use this to make myself indispensable to a group, as I become the-person-who-does-that-task."

Another strategy was the use of lists, logic and reasoning, to create much needed structure and to compensate for organizational and social difficulties. 

"I make agendas for meetings with advisors and other important people and lists of things to talk about for Skyping friends. /.../ I use lists, plans, and organizing to help with time management (I used to be awful at this). /.../ I work through things logically in general. 
"I also am very intelligent, and use my reasoning capabilities to analyze problems."
"I have rules for dressing appropriately."

 

The "Golden Rule For Aspies" & other social strategies

Finally, some of the participants mentioned the use of quirky humor to improve social situations and the use of strong personal/ethical values to overcome social challenges. I particularly enjoyed a slightly modified "golden rule" for aspies, provided by one participant: 

"Do unto others according to your best guess as to how they would treat you if they were treating you the way they want to be treated." 

 

Seemingly insurmountable challenges

Our second question to the four women was whether there were any challenges that they found impossible to compensate for or deal with. The answers mainly involved sensory challenges, verbal communication, and social requirements like dressing appropriately. 

"There is no method I've found which is able to reduce the magnitude of my sensory experience. The world around me is literally painful to me."

This participant hypothesized that the relationship between anxiety and sensory overload is different between autistic and neurotypical people. While neurotypical people can get hypersensitive to stimuli when they are stressed and get irritable or stressed from them, autistic people have a primary sensitivity to stimuli that causes stress that can't be removed unless the sensory stressor is removed. This way of thinking had been helpful to this participant, because she can view her anxiety as physical rather than a form of generalized worrying. The best way to deal with this anxiety for her has been to try meditating/breathing or changing the environment, instead of trying to "talk herself out of" the worrying.

In terms of verbal communication challenges, one participant described increasing problems with getting thoughts out in a coherent manner, despite being able to visualize and conceptualize them inside her head. This is something I have heard other autistic people describe too. Another participant described problems regulating the physical act of speaking, resulting in such fast speech that it could get incomprehensible to others. 

Finally, the problem of figuring out how to dress is something I encounter frequently in my interactions with autistic people. For women, this can be an especially troubling social deficit owing to social expectations. One participant said: 

"Despite my rules, I still dress "wrong" sometimes. One time I was home and came downstairs and my mom told me I was dressed wrong and I exclaimed that I'd invoked 7 separate rules to put the outfit together and listed them and then she told me what I still had to fix."

 

Take-home message

Given the small number of participants, I don't really want to write a formal summary. Let's let the voices speak for themselves, and let's remember that autism is a common condition and that everyone is different. 

But there is one take-home message I do want to articulate, and I draw upon my collected interactions with autistic people in the past five months. Autistic people are still struggling out there, and there are not enough support structures in society to help ease this fight. I hope we can continue to make a difference, in whatever ways we can.

Thanks for reading! Our initial informal pilot studies and new formal scientific studies are being analyzed, planned and written up. We hope you consider participating in the future!

The Autistic Women's Questionnaire: Getting diagnosed

by Kajsa Igelström, PhD

Autism in women is thankfully being increasingly recognized, even though we still have a long way to go to ensure adequate support for everyone. Improvements occur steadily through personal blogs, autobiographical books, increased research funding to studies on sex differences, and social media movements like #shecantbeautistic. Autistic women are beginning to find venues in which they can express themselves and find acceptance.

 

The Women's Questionnaire

We put out the Women's Questionnaire at the start of 2017, inviting autistic women to share their thoughts on any topic pertaining to being a woman on the spectrum. We received responses from 27 women (10 from the US, 9 from the UK, 3 from Finland, 2 from Australia, 1 from New Zealand and 1 from Germany). This was a pilot study aimed at getting inspiration for further studies and to give a voice to those with things to share.

We'll split our report and discussion of the result over several blog posts. This first one deals with one of the most dominating themes in the Women's Questionnaire: the challenge of getting a diagnosis. 

 

The wish for an earlier diagnosis

In a previous pilot questionnaire, the Strengths & Challenges Questionnaire (we'll report more on that too eventually!), we asked the question of whether respondents felt they should have been diagnosed earlier. We did not have enough male respondents to make a comparison between sexes, but the answer was pretty clear among the 55 women who answered all relevant questions:

A whopping 82% said that they strongly (64%) or somewhat (18%) agreed that they should have been diagnosed earlier in life. 

None of the women had been diagnosed before the age of 11, and 75% had been diagnosed after the age of 20. (Note, however, that our primary recruitment venue was closed Facebook groups, which almost certainly biased our sample towards women who did not get enough help from society).

 

Many years of suffering

It is likely that the age of diagnosis is decreasing, but today's adult women were often diagnosed after a childhood/adolescence/adulthood of turbulence, alienation, depression and other problems. Such experiences during brain development are difficult to recover from, although an autism diagnosis can often be the start of a process towards self-acceptance and better social experiences.

In the Women's Questionnaire, respondents were free to write anything they felt was important, and thus no specific questions about diagnoses were asked. Despite this, the most common theme, expressed by a large proportion of the women was a grossly delayed diagnosis and many years of suffering from not understanding themselves or others.

Their first-hand experience was often that professionals lacked critical familiarity with autism in females, with some women even being told that they can't have autism because they are female. Superior skills in camouflaging or compensating for difficulties were mentioned frequently as a barrier to diagnosis and a source of alienation.

 

Women's first-hand experiences

There is probably no better way to illustrate the problem than letting the women speak for themselves. Here are a few quotes from our respondents (edited for brevity and spelling that would reveal her geographical origin):

"We are conditioned from birth to be friendly and accommodating as women [and] this gets in the way of diagnosis. People do not see me as autistic because of this." 
"Many people fail to understand that autism presents differently in women /.../ Even medical professionals /.../ seem to think that if you can have a conversation with them, you couldn't possibly be autistic." 
"/.../ [N]o one ever recognized the signs of autism for the first 26 years of my life, so I went through it struggling and thinking nothing could help /.../ and/or gas-lighting myself into believing [my problems] weren't real or I was being a hypochondriac."   
"I was diagnosed in my thirties. I was diagnosed with different things before, including ADHD, depression and dyspraxia. I don't disagree with the diagnoses but a lot of solutions offered did not work because of my underlying autism. /.../ A lot of my issues became more manageable once I realized I had autism."    
"I am very sad I wasn't diagnosed earlier." 
"It took a long time for anyone to recognize the problems I have, since I compensate a lot. No one realized until I told my therapist and the doctor that I myself suspected I had autism."  

 

To summarize, our small pilot study, together with voices on social media and other venues support that autistic women need more attention, help and understanding.

We only studied adults, so it is possible that the next generation of females is already having a slightly better experience. (It will be at least a year before I get the opportunity to talk to younger autistic girls.) Regardless, we are still hampered by a paucity of knowledge about female autism, and there may be many undiagnosed adults out there.

 

What can we do?

As you know, we do outreach and neuroscience, and spread the word (please keep sharing your stories!). Some of our respondents suggested that autism could be screened for at an early age, and the screens could be better targeted to identify women. I know the autism field is indeed moving in that direction. Many adult women are finding self-acceptance and community support on venues like Facebook, where closed groups exist that only accept autistic women. In fact, our participants have sometimes mentioned such venues as "life-savers".

Anyway, we'll keep working on this. More posts are in preparation on other aspects of the results from our questionnaires, and we are planning to put out a questionnaire about specific topics related to pregnancy, birth and/or child rearing.

Sign up here if you would like email notifications when a study comes out (a few times a year).

 

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

by Kajsa Igelström, PhD

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 :-)