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! 

Your 9 criticisms of our work - with responses

--- Kajsa Igelström ---

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

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

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

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

Thanks everyone for your help, advice and input. 


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

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


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

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


3. What about cultural differences? Do you care? 

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


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

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


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

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


6. The questionnaires are too short! 

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


7. Remember the gray areas! 

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


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

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


9. Thanks for noticing us!

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


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

Thanks to Abby for the new logo!

logo_v2.png

You might have noticed that we switched out the old, somewhat arbitrary, images on this website, the Facebook profile and the blog platform.

Our very own Abby made us a new fresh logotype to represent the project, so no more random pictures of Princeton University buildings! Thank you Abby for the effort and for helping us build our online identity! :-) 

 

 

Keep up the good work!

We are so excited about how well this project is gaining ground! Thank you all who visit the Facebook page and this website, sign up for email updates, and – of course above all – participate in questionnaires. We couldn't do any of this without you. 

Once the first batch of questionnaires closes, we will brew lots of coffee and start analyzing the responses! Can't wait. We're also excited about the large proportion of female participants, given how under-recognized autism still is in women. We'll start reporting results back to the community through the Facebook page and newborn blog. 

Thanks again to everyone! 

All the best,
Team Extraordinary :-) 

Two new questionnaires launched!

While the responses keep trickling in for the Strengths and Challenges survey, we have launched another two questionnaires that are shorter and more open-ended. 

In one of them, we are interested in hearing your thoughts about how you personally view autism - as part of your identify or as a disability, or something in between or a combination... Whatever your thoughts are, we would love to hear them. We aim to publish the results so that funding agencies, scientists, and neurotypical people in general can read and learn.

The second questionnaire is exclusively for women (transwomen included of course) and asks an open-ended question about what it's like to be on the spectrum as a woman. Female autistic people have so far had a very low profile, so we are hoping to find out more about your challenges, thoughts and wishes and anything else you can think of. 

An avalanche of responses!

After quite a slow start with brand new social media presence, the first questionnaire is picking up! The number of responses has doubled in the last hours and more questionnaires keep being submitted. Keep them coming – the more we have the better research we can do!!

I can't express in words how grateful I am for your responses and stories. 

Also, thanks to those who have messaged us and pointed out mistakes and issues. We listen to everyone. 

Kajsa

A discussion on cognitive tests in high-functioning autism

--- Anonymous ---

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

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

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

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

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

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

Or, rather: 

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

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

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

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

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

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

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

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