Everyone wants to be autistic these days

 
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I’m 2. My Mom tells You I’m disappearing from her, into a world of my own. She tells you I cry a lot and that our connection has weakened. But to You I seem perfectly happy, so You tell her not to worry.

I’m 3. Mom is learning by trial and error how to avoid my meltdowns. She creates structure, routines and predictability to help us through the days. She doesn’t even consider going back to You. After all, Your professional assessment is that I’m a perfectly happy child.

I’m 5. The boys at Kindergarten want to see my private parts and I don’t know it is wrong, so I pull my pants down and loudly recite all the types of potatoes that I know.

I’m 6 and preschool terrifies me. Every real-time situation is akin to a launch into free fall. At home I scream and scream in endless tantrums. Once, Mom tells me I’ll ruin my voice if I keep screaming. The knowledge I’ve destroyed my voice haunts me for many years.

I’m 7 and bullied. Mom tells me they’re jealous of my intelligence and I believe her, because surely she must know. The ping pong table becomes my imaginary boat, and I sit there nearly motionless, playing out scenarios in my head. At after school care I’m glued to the reading couch. It’s safest to never look up.

I’m 8 and Mom finally asks You for help again. You tell me to count to 10 instead of melting down. You tell me that the other girls will stop being mean if I just try to be a bit more like them.

I’m 10 and scared, even though the bullying has stopped. I focus on being The Best at school. I have lived with constant anxiety for years, but don’t know life could be different.

I’m 13 and the social gap between me and others widens further. I’m isolated without knowing it. Excellence matters more and more, but also becomes harder and harder.

I’m 14 and exhausted. I can’t keep up. I’m isolated. My performance is dropping. I’m anxious and scared. We finally get Your attention, and You make sure I get therapy and follow-up. I’m supposed to talk about my childhood but I have nothing to say.

I’m 15 and hospitalized, because I’ve become The Best at being dysfunctional. You tell me I have to make up my mind: life or death? I don’t know the answer and the question makes me confused. Someone thinks I have an empathy disorder called Asperger’s and I don’t believe it for a second.

I’m 16 and in a state of constant panic. You say I want attention and instruct those around me to ignore my expressions of despair. They follow Your instructions, because You’re a professional, until a different professional discovers an anomaly in my brain. Suddenly, You say it’s not my fault. You say I’ll probably never live an independent life.

I’m 17. I meet a therapist who helps me find my very first words: “I am lonely”. I feel lonely. I feel unseen, isolated, voiceless. I have never been able to communicate. I have never known what my emotions are. There is only anxiety. I can’t believe I’ve never ever realized this myself.

I’m 19. I have now worked with the therapist for several years to learn to recognize emotions, and for the very first time I experience something that isn’t anxiety. It’s sadness in its purest form. It’s beautiful, and so very painful. My emotional repertoire is growing.

I’m 20 and begin to feel glimpses of true happiness. Every day, I analyze my behavior with a great deal of attention and logical thinking, and slowly reprogram my reactions to become more adaptive and appropriate. The wordless rage and anxiety disappear.

I’m 21. I lift my gaze and realize I have never faced the world outside before. I discover that, if I concentrate, I can see the people’s faces. If I concentrate on my body and the world at the same time, I can make the world slow down and perceive details in the chaos. I can truly begin to interact with others. I go on my first independent vacation. I have my first glass of wine. I look at my wristwatch and spill the wine on the pavement. My friend laughs and says “that’s classic!”.

I’m 22. I’m nearly ready to fly. Despite my transformation I still can’t stably organize my time or regulate my food intake. I get scolded for a lack of motivation, for wanting to regress to a less responsible stage. I try hard, fail, try harder, fail, get scolded, and eventually try to hide the failures, thinking I’ll work it out alone. Motivation is not something I’m lacking.

I’m 23. I’m happy and well-adapted, despite some hidden glitches in my functioning. I move far away to get a college degree.

I’m 25 and exhausted. It’s hard to keep up. It’s hard to fit in. I don’t understand why I keep being misunderstood and made out to be a warrior-type, competitive, aggressive, neurotic… But I’m still happy, especially when I’m alone. My baseline is happy, even though I admittedly spend more time away from baseline than I do around it.

I’m 27 and break down from the pressure. I barely make it to the finish line, but graduate as an A-student.

I’m 28. I start another degree, and get physically ill. Yet, I keep going, more and more isolated, and less and less sure of myself. My place in the social world is shaky. Performance-wise I’m doing fine. Studying is my only real interest.

I’m 30 and fight for my own happiness and health. My social confidence is completely corroded and I’m slowly giving up the thought of being part of the social world. I have some serious doubts about life.

I’m 32. I move again, to accept a job after graduation. I’ve decided that I’m weird and try to accept it. I struggle with everything and am juggling a paradoxical mixture of happiness and stress. It’s very confusing, but I blame outside stressors.

I’m 34 and have removed the worst stressors from my life. Slowly I realize that the social isolation, misunderstandings, organization issues and perception problems remain, no matter what I change. I can’t just keep blaming stress. There must be a constant in this equation, and that constant - logically speaking - must be Me. A door opens.

I’m 36 and have finally realized I’m autistic. I don’t just have traits - I have severe limitations that impact every day of my life. I get evaluated and diagnosed, and start a process of re-evaluating every aspect of my existence, grieve the loss of old ideas, and celebrate the seed of real self-acceptance that I feel has been planted.

I’m 38 and meet You again. You don’t know that I’m autistic and you don’t know we’ve already met. “Everyone wants to have autism these days”, you say casually, and I chuckle collegially because the situation demands it. You take another bite of your cinnamon bun. “Any plans for the holidays?”, I ask and take a sip of my coffee.

The road to diagnosis: Barriers

Our readers tell us about their journeys towards evaluation of autism, ADHD and other neurodevelopmental challenges. This is a summary of the theme “Barriers” — factors that obstructed, helped, slowed down or sped up the process.

 
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--- Kajsa Igelström och Maria Strömberg ---

This is a loosely translated version of the original Swedish post. We recently ran an anonymous informal questionnaire called The Road to Diagnosis, which gave us stories from about 250 people (women, men and transgender individuals).* We’ll summarize the results over several blogposts, and this is the first one. Most participants had been diagnosed with autism or ADHD (or both), and a small number had other diagnoses such as DCD, tics or dyslexia. Cisgender women were in majority (84%) and most participants had been diagnosed late.

Here are the most common factors that were crucial (in either direction) in the process of seeking evaluation and diagnosis of autism/ADHD.

1. Let’s start with a lottery

People born in Sweden already have an advantage. For example, many adults in the USA in a recent study of ours referred to financial factors as a major barrier, and this appeared less common in Sweden. In addition, compared to some countries in Eastern Europe, Asia and Africa where neurodevelopmental differences may be extremely stigmatizing or completely unrecognized, there is more awareness in Sweden.

HOWEVER… the stories we collected showed an enormous variation in treatment, waiting times, and other factors. It became clear that even within the small country of Sweden, it’s a bit of a lottery. Local politics and geographical differences in the healthcare system seemed to matter a lot, and individual clinics had different policys on who they would or would not evaluate.

Geographical variability is understandable, and the variability within the healthcare system depends in part on variable abilities to take in the constant flow of new knowledge, and in part on variable competence of individual health professionals.

But the fact that the process had gone smoothly for some and taken many years for others, irrespective of clinical difficulties, shows that the process can work almost seamlessly but often does not. We suspect that before all contributing factors have been identified and standardized, one just has to hope to… be lucky.

Which leads us to the next point.

2. Meeting the right person

Many stories included complicated unfruitful rounds within the healthcare system, followed by the description of suddenly meeting a person who suspected what the problem was. It could be a social worker, a psychologist, a general practitioner, an occupational therapist, the person evaluating one’s kids for autism/ADHD…

Suddenly there was a person across the table, who had enough knowledge, creativity or energy to help get a process started towards insight and diagnosis.

These random encounters could happen at almost any point in the journey, it seemed. We saw few patterns, except 1) it often happened during the evaluation of one’s child, or 2) it happened after many years of mental health problems and appointments with countless health professionals.

3. One’s own insight may be a prerequisite

Many had not been lucky enough to run into a person who could guide them towards an evaluation. In those cases, the turning point was often one’s own insight, obtained through the experience of a relative with the same diagnosis, or through information in media or support groups.

After this point, some chose to live with the knowledge without seeking diagnosis, using new strategies to improve their function and becoming more forgiving to themselves. Such “self-diagnosis” was common in our first research study mainly involving people in the US/UK, where barriers to autism diagnosis for women and transgender people often involved fears of discrimination, losing custody or not being believed, and the logically sound argument that “there is no help to get anyway so why should I live with the stigma?”. In this Swedish group, it was pretty uncommon to be satisfied with self-identification — most wanted to get the diagnosis for validation or support.

Many more described a scenario of getting an insight that provided the motivation and courage to present their theories to a health professional. Again, the theme of having to encounter the “right” person showed up in the responses, but as long as that happened, evaluation and diagnosis often followed.

“Insight” obviously doesn’t guarantee that one has interpreted one’s own function in a correct way. But since insight was so often described by late-diagnosed people as a necessary trigger for getting the right care, we believe it indirectly reflects a real, important barrier to diagnosis:

These individuals are often “invisible” in the healthcare system until they themselves understand and present the possibility of autism/ADHD.

4. Chameleons fall between the cracks

Camouflaging has been discussed a lot in the most recent years, especially in the context of girls and women who had never externalized the problems. Masking of diagnostic traits is not unique to the female gender, but it has mainly been framed in that context. Some talk about “the female phenotype”, i.e. that autism and ADHD may manifest in ways that haven’t been properly described and studied yet.

Our network of participants currently comprises many “chameleons” who, through observation, training and a drive to seem normal, have become masters at hiding anything that could be interpreted as abnormal. They are so analytical and verbal that they can describe it eloquently and with great insight, but in real life, things can fall apart.

Several people described how they had been denied an evaluation entirely based on previously having studied or worked full-time. Others went through an evaluation and were told that they fulfilled all criteria when it came to the traits, but that they could not get diagnosed because their cognition/function was too good. These were people who had camouflaged for a long time, until they crashed and burned later in life, in ways that could not be called autism or ADHD (burnout, depressions, etc).

Camouflaging can literally be life-threatening. A recent study suggested that camouflaging of autism increases the risk of suicidality. The hundreds of stories that we have received from adults in a number of countries have shown us in a very palpable way how destructive it can be to not be able to exist as Oneself.

Which leads to our last point:

5. Smoke screens of psychiatric consequences

Adults and adolescents who live with neurodivergent minds without knowing it often suffer horribly. They find their own explanations for feeling different, not coping with school, failing to obtain and keep jobs, or becoming exhausted by the smallest things. They might identify as lazy, useless, alienated… There are many versions of how one’s mind can construct explanations for the chaos or alienation. It’s actually quite natural. The brain finds patterns based on the information available.

The most common descriptions of life before a diagnosis included intense psychiatric suffering and often burnout (the latter is a relatively common diagnosis in Sweden). We know from other studies that those who don’t get an early diagnosis may instead get a collection of other diagnoses, often depression, anxiety, bipolar disorder and personality disorders of different kinds.

Sometimes, those psychiatric conditions are later re-interpreted as consequences of the underlying autism/ADHD. Sometimes they are viewed as independent disorders. But whatever happens later, all those psychiatric problems may have formed a very effective smoke screen throughout adolescence and adulthood. Autistic adults have even been called The Lost Generation. People can drown in a stormy ocean of failures, stigmatizing diagnoses, counterproductive therapies and self-hatred.

There is hope

Despite all the negative descriptions of barriers to diagnosis and their consequences, it’s possible to see some solutions hiding between the lines:

The knowledge in society and the healthcare system must be broadened and standardized between different regions (and countries), to detect autism/ADHD quickly, also in adults. We are moving in that direction. More and more healthcare professionals learn to recognize the symptoms, more and more scientists get interested, more and more journalists and editors choose to report on it… It will get getter.

We also need to discuss what a “requirement for support” (needed for diagnosis) really means, and how to discover a need for support in high achievers. For example, we hope it’ll become less and less common that people get barred from getting an evaluation due to having a degree or job on their CV.

We always love feedback and more stories.

*This post is part of Extraordinary Brains’ outreach work, where we ask questions, individuals respond, and we summarize the responses in an informal way on the blog. In addition to these online summaries, we use the information to inform the design of new research studies, done on site in Sweden and online as questionnaires.

Experiences of school in autism & ADHD

We asked adults with autism/ADHD and parents of children with autism/ADHD what's needed in school. This post describes some themes that appeared in the written responses from 78 people. This is a simplified translation of the original Swedish post.  

Autistic people: For purely editorial reasons, person-first language is occasionally used in this post. It's because we write about both autism and ADHD, and identity-first language can't be used for ADHD (as far as we know!). We hope you understand!  

 
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--- Author: Kajsa Igelström ---

1. See me

An thunderous "PLEASE SEE ME!" echoed throughout the responses. It's incredibly important to be accepted as a unique individual, and feel that you're okay just the way you are. 

"Quiet girls" and others who don't make much noise in the classroom are especially vulnerable. Girls who don't act out can get delayed diagnosis of both autism and ADHD. One suggestion from participants was that teachers could try to verify that quiet children have understood the instructions. Another suggestion was to actively look for kids who internalize stress, and try to understand what's going on. Simply asking the child how they're doing can be a first step in many cases.  

Some participants said that they wished that focus could be moved away from superficial behavioral issues and directed at the underlying problems. A feeling of guilt had followed several participants all the way into adulthood. Sadly, some parents indicated that this is still a problem - that they and the child were blamed for the child's challenges. Adults said that some factors that would have helped them were an early diagnosis, and in some cases ADHD medication.

Parents also wished they could be listened to and seen as a potential source of knowledge, instead of being regarded as "annoying parents". So, in summary, the "annoying kids" may be trying to express their needs, and "annoying parents" may be a valuable resource. And the quiet, frightened children may have things to say.
 

2. We're all unique

Several adults with diagnoses discussed the negative impact of the narrow expectations of what "normal function" means, and of social norms of how boys and girls should behave. Adults wished that their unique behaviors or uneven performance profiles would have been met with acceptance. 

Some kids wanted to be alone between classes and didn't appreciate teachers' attempts to help them become socially included. Others desperately wanted to interact with their classmates but got to sit in a separate room to reduce sensory inputs. Some did best in special schools or small "Asperger classes" (the latter is probably a Swedish thing), and others were happiest in a mainstream school. Both unusually talented kids and those with greater academic challenges wanted to have their needs met in terms of stimulation, encouragement and adaptations. Schools that in some way focused on individual qualities were praised by parents, but getting access to them had in several cases required relocation of the whole family to a new town.

We can only speculate which factors make certain children do better in certain schools. We understand that chronic stress is a huge problem for teachers, and that a lack of resources can cause feelings of insufficiency. Our guess is that a complicated combination of teachers' well-being, work environment, and education, the school's resources and environment, and the communication between parents and teachers, all contribute to whether or not children with autism/ADHD perform well and feel safe and happy in school. 
 

3. Give me hope

Several adults said that they had been told by teachers that they had no future unless they graduated. We heard stories about how this had resulted in a fundamental feeling of hopelessness, or an unhealthy pressure to perform. Even if there are good intentions behind such comments, it's important to realize that the effect can be destructive, especially for children with a "literal" thinking style. 

When you're a kid, it feels like school represents reality. The concept to hang in there until you emerge on the other side can be difficult to grasp, especially when there are challenges with abstract thinking or attentional function. To not be challenged, to be too challenged, to be bullied, to feel invisible... All experiences at this age contribute majorly to the child's experience of reality, as the developing brain is extremely plastic and receptive. 

Participants stressed how incredibly important is is for children to be encouraged in different ways, and to strengthen the good qualities  - academic or personal. See the strengths and strengthen them. See the weaknesses and stimulate development. 
 

4. Give me peace and quiet

Many individuals described the school years as a phase of constant stress and anxiety. Especially when adolescence approached, depressions, sleep disorders, and other manifestations of stress started to emerge. We heard similar stories from parents. It can become a vicious circle. The stress makes school harder, and the challenges at school increase the stress.

When your brain is different, school can be extremely draining. It is not just the school work that requires energy, it's almost all components of the day. The background noise, the breaks between classes, the lunch situation, not knowing what'll happen next... Even going to the bathroom can be stressful for some kids. In addition to being bullied, many kids had motor problems (a common symptom in autism and ADHD). This made physical education classes and anything that required hand coordination (e.g. writing) difficult and extra stressful. 

In addition to environmental adaptions like minimizing sensory inputs, participants suggested shorter lessons, more frequent breaks, and shorter days. Exhaustion caused by the demands at school was a common topic, and parents even described burnout in their children. 
 

5. Give me clarity and predictability

This topic was brought up by the majority of both adults with diagnoses and parents, and it was relevant in both autism and ADHD. It's not particularly surprising, but the needs were not satisfied in many cases. 

Detail-oriented thinking, concentration difficulties, and problems with unpredictable events are some of the challenges that cause an increased need for clarity. Breaks and physical education classes were mentioned as especially challenging situations due to fuzzy rules and undefined expectations for how to behave. 

The participant suggested specific solutions, such as preparation before any deviation from the usual timetable, having a detailed and clear timetable, and implementing a greater degree of feedback from teachers about how well the child has understood the instructions. Autistic individuals often found instructions and questions very unclear, and parents described stressful situations when homework had to be deciphered at home. A need for step-by-step instructions and in many cases a preference for written information were mentioned, especially by adults with own diagnoses. 

Improved continuity was suggested by some, in particular by having their own bench in the classroom, a home classroom and the same teachers. Further, there was a need for more reliable handover between teachers/schools whenever the child switched grades or teachers. Parents experienced that everything fell apart whenever the child's context changed. 
 

6. Use existing knowledge

Finally, it was interesting to see how much weight was put on whether one had been lucky or unlucky. The fact that changing schools can save a child's wellbeing and performance shows that existing knowledge is not always being used, or that it is not spread to all schools and teachers. It is important to examine that phenomenon, because in theory there is a solution. How can we improve the use of existing knowledge in all schools? It is also true that even the experts don't understand the huge variability and how we can help all kids to get the support they need at school. There is clearly much work to be done! 
 

Autism and Identity

--- Katherine Lawrence ---

Human beings have a tendency to categorise themselves and others in various ways and through this, identities are forged; people identify themselves through groups to which they belong and form communities around that - for example, political beliefs, religion, cultural heritage, language(s) used, hobbies, disability, and neurology. These different aspects of identity come together in unique combinations.

Identity is hugely important for many autistics, and autism is a central part of our identity, which is why the vast majority of us favour the use of identity-first language ("is autistic") over person-first language ("person with autism"/"person who has autism"). I did an entire long blog post on it this time last year, which you can read here at 30 Days of Autism Acceptance: Day 15, and there are many articles on the subject by other autistics and allies, all easily available.

I identify as Autistic, as do many others, rather than as "a person with autism" or "having autism" because autism is integral to our very being - it affects everything about how we experience the world and is not just an add-on. I have fibromyalgia and ME/CFS but they do not define me in the way that being autistic does; I would still very much be the same person without those conditions (just more busy and less tired/in pain!) whereas if I was not autistic I would be a completely different person.

I recognise that there are difficulties with being autistic, and while a lot of those can be significantly alleviated if the world was more autistic-friendly, there are going to be times when all the accommodations in the world will not prevent a meltdown. However, I would not change my neurology for the world and I would never want to not be autistic. It has given me the ability to hyperfocus in a way that might not be possible if I was neurotypical (NT), have an incredibly retentive memory for things that interest me (although I'm still incapable of going into town or to Sainsbury's without a list if I'm going to have any chance of getting everything I want!), a level of passion that I'm not sure I'd have if I wasn't autistic, an eye and ear for detail, a visual brain (really beneficial for someone who's involved in the Deaf community and wants to be a British Sign Language/English interpreter!), the ability to think differently from others and thus put a different perspective on things and probably many others.

Having a formal diagnosis has enabled me to be confident in my identity as an autistic woman, which I went into more detail about earlier this month in the D is for Diagnosis post.

Being autistic defines me. I see many people, both autistics and parents, say that they "won't let autism define [them/their child]", but that's not actually viable, because the very nature of autism influences absolutely everything about a person: how they perceive, experience and interact with the world, how they respond to things, how they think, how they process, how they communicate, how they interpret things, how they manage tasks, how they learn... Everything.

Accepting an autistic identity is crucial for mental wellbeing. I don't mean that once you accept the identity everything is immediately going to be perfect, but it does allow for improvement and self-confidence. It helps you understand who you are and how you experience the world. If you are constantly fighting against that aspect of your identity, it makes it very difficult to progress because you are essentially at war with yourself, rather than utilising your strengths and being kind to yourself with and accepting of your difficulties. Since discovering I was autistic, I have been much more gentle with myself when I struggle, reminding myself that it's OK if I don't feel able to cope with somewhere with multiple background noises, that it's OK to request that people are clear and direct rather than dropping hints (because I cannot pick up on hints, ever!), etc. But also, I have come to recognise my strengths and utilise those.

Once I accepted myself as autistic, I became much more confident in myself. I had much more insight into myself and how I related to the world, and it enabled me to find others who shared this identity and thus find a community to which I truly belonged. I wrote a bit about this process last year in Harry Potter, autism and me. And this can be wonderfully liberating.

Accepting that I was autistic and strongly identifying so gave me the confidence and self-esteem to be fully and authentically me, without restraining behaviours and communication styles that were autistic and trying to adhere to NT standards and conventions that felt uncomfortable, unnatural and wrong. Acting NT (or at least, trying to follow conventions that would reduce the likelihood of me being bullied, singled out and excluded). Stimming in public? No longer suppressing that just because some people think it's weird! And to be honest, the more people who are unafraid to act autistically in public and are themselves, the better - it becomes less unusual, less remarkable, and will hopefully lead to greater acceptance because people will realise it is simply one aspect of humanity.

And if autistic children see autistic adults accepting their identity and being authentic and true to themselves, hopefully they will be more confident in themselves. The Deaf community has a concept called "Deaf positive", and it's all about being confident in yourself as a Deaf person, as a sign language user, as equal to hearing people, accepting and embracing your Deafness and being part of a community of people like you. Deaf youth can look at Deaf adults who are comfortable and confident using sign language in public, requesting and explaining communication needs, living happy and successful (however you want to define that) lives.

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Part of autism acceptance is the autistic equivalent, which I refer to as Autistic Positive. We desperately need that and autism acceptance - true acceptance - means that autistic people are confident to be themselves, accepting of how their brain works, because NT society accepts them ("acceptance is an action" is a common phrase you'll see around, and it really is - it requires people to make effort to include autistics and to not try to make us NT, to accept us as we are) and confident in their identity as an Autistic person.

© Katherine Lawrence 2018

Getting an autism diagnosis

--- Katherine Lawrence ---

Getting diagnosed as autistic can be extremely positive for many. The process can be long, hard and slow, but once the point of formal diagnosis is reached, it can be a massive relief. And this is why I am defining "diagnosis" as autism-positive and as part of acceptance.

Written by Katherine Lawrence as part of her heroic series of blog posts during Autism Acceptance month (April 2018): "D is for Diagnosis"!

For parents of children, getting a formal diagnosis can be a tumult of emotions, some positive and some negative. From the various autistics-and-families groups I'm in on Facebook, the positives of having a diagnosis tend to centre around having confirmation and validation of their child's neurology and difficulties, knowledge that they have not been bad parents and access to supports (potentially - it can often be a bit of a postcode lottery!) that can only be obtained with formal diagnosis, such as equipment, support in school and so on. Additionally, it can help them understand their child better (depending on where they look, what they read, etc).

For people like me, who grew up not knowing they were autistic, diagnosis again can cause a mix of good and bad emotions. I've noticed, though, that feelings tend to be overwhelmingly positive, especially for those who have been trying for a long time to get a diagnosis. I spent several years in the self-diagnosed camp because trying to get an assessment as an adult in the UK is difficult; in 2009–10 there was nothing in my parents' area of Essex for assessing adults, and it wasn't until 2011 that an adult assessment service was set up in the Exeter area. For me, getting that formal diagnosis was 100% positive.

Upon receiving a formal diagnosis, the feelings I and many other adult-diagnosed autistics experienced were a combination of joy, relief and validation. Some do experience negative feelings, such as confusion, anger, frustration and fear - things like, "Why was I not picked up sooner as autistic?", "What does this mean for my future?", "Will it make my life more difficult?", "Will people reject me?" and "I don't want to be autistic" (partly because of the persistently and wholly negative portrayal of autism), to name some. These are perfectly valid responses, particularly in a world that tend to be hostile, overwhelming and confusing to autistics. This is why we need proper acceptance.
 

Why so positive?

Knowing that your brain is not defective or broken, that it is simply wired differently, can be a massive relief. I was 23 or 24 when I self-diagnosed and 28 when I was formally diagnosed. When a friend suggested to me that I might be autistic, I looked into it and comprehension dawned, everything clicked into place and you know in cartoons when someone has an inspiration, a lightbulb lights up over their head? I could practically see that! For a long time I had genuinely believed my brain and myself to be broken, because I struggled socially, my bluntness was often perceived as rudeness, I was hypersensitive to everything, I was often considered weird and awkward, and things that came instinctively to others (e.g. comforting a crying classmate) were very difficult and unnatural to me and were very intellectualised. Once I realised that there was nothing wrong with me, that everything could be explained, I was a lot kinder to myself. And that brings a real sense of peace and self-acceptance.

Once I knew I was autistic, I indulged my inner Hermione and read as much about autism as I could get my hands on! I wanted (and still want) to know everything about autism. And in reading things about it and interacting with other autistics, I came to understand myself so much better than I had previously done. And that's a massive self-esteem boost.

Validation is a powerful thing. I respect that some people do not want to seek a formal diagnosis and they have their reasons. It's something that is currently being researched at Exeter University in the Exploring Diagnosis project, for which I am an advisor on one of the PhD projects. If anyone in the UK is reading this, sought diagnosis as an adult or chose to remain solely self-diagnosed, and would be interested in participating as an interviewee, do let me know and I can put you in contact with the relevant people! For me, being only self-diagnosed was not enough - I found myself frequently questioning and doubting whether I was actually autistic, and wondering if it was mental-health problems masquerading as autistic signs (turns out the mental-health problems were largely a result of difficulties from not realising I was autistic!) In addition, I encountered a number of people who did not see self-diagnosis as valid and I got rather fed up of trying to justify myself to them. Getting a formal diagnosis, for me, silenced the doubters (including myself!) and, more importantly for me, confirmed and validated that my difficulties (and also things I have come to see as strengths) were real, that my experience of the world and how I processed it were true and not some figment of my vivid imagination, and that I was definitely autistic.

As well as this, when I lend my voice to campaigns such as Not Locked In (last year) and the ongoing Judge Rotenberg Center campaign with Cal Montgomery and Kieran Rose, having a formal diagnosis gives more weight to my voice than if I were only self-diagnosed, and means it is more likely (not guaranteed by any means, because people like to throw functioning labels around by claiming that I'm "too high-functioning" to advocate for "low-functioning" (their words, not mine) and the "Not Like My Child" card (of course I'm not like your child - they're 6 or whatever and I'm 33!)) that my voice will be listened to, because I am considered a "genuine" autistic. I wish that self-diagnosed autistics were afforded the same level of value as those of us who are formally diagnosed, but that is not currently the case.

Having that formal diagnosis has given me so much confidence to be authentically me. I don't hide my stimming, I'm open about not making eye contact and why, and it means that I don't hide my autism generally. When I go for job interviews (rare, because my physical disabilities significantly restrict how much I can do, and because I'm autistic certain environments are unworkable for me), I can inform them beforehand that because I am autistic, I will not be making eye contact due to the physical pain it causes me. I am autistic and proud to be so! 

As I said in yesterday's post, C is for Community, getting that diagnosis has helped me feel more part of the autistic community than when I was only self-diagnosed, due to the validation and confidence explained above. And I've made some amazing friends there. I'll talk more about that later this month in S is for Social Media.

In getting a diagnosis, I now know that I am not alone, that there are many people out there who are like me and who understand me. And that's such a positive thing! There are people out there who are like me; I'm not some sort of broken freak of nature!

 
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Being formally diagnosed can (not necessarily, as it depends on people and what's available in your local area) enable you access to (appropriate) supports and accommodations that you may not be able to access without a formal diagnosis, such as support in education, assistive technology, therapists trained and/or specialising in working with autistics, and so on. Many places will only consider those with a formal diagnosis, possibly due to limited resources, the risk of doing harm with an unsuitable approach or for insurance purposes (more in the US than in the UK), for example. While such things are meant to be based on needs rather than diagnosis, having a formal diagnosis can make the process easier and quicker. Also, knowing that you are autistic can make it easier to determine particular techniques that work for us but not necessarily NTs and vice versa.

Getting a formal diagnosis has been immensely positive and has enabled me to accept and be confident in my being autistic.

© Katherine Lawrence 2018

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.)

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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.

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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.
 

 
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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.
 

 
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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.

© Joost Wiskerke 2018

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! 

Autistic voices on the Autism Quotient (AQ) test

---Kajsa Igelström ---

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. 

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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 ---

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.

 
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Your feedback on the ongoing study

--- Kajsa Igelström ---

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

--- Anonymous ---

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.

 
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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...

Our struggles are real

--- Kajsa Igelström ---

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!)

 
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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.

 
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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

--- Kajsa Igelström ---

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

--- Kajsa Igelström ---

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!