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

Friday, April 28, 2017

The Autistic Women's Questionnaire Part 1: Getting diagnosed

by KM Igelström, PhD

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

The Women's Questionnaire


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

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

The wish for an earlier diagnosis


In a previous 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 may have 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 show 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 a "life-saver".

Anyway, we'll keep working on this. More posts are in preparation on other aspects of the results from the Women's Questionnaire, 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).

Monday, March 6, 2017

Your 9 criticisms of our work - with responses

by KM Igelström, PhD

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

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

We also had a bunch of more qualitative questions, so we launched six small questionnaires with only 1–2 questions, and hoped some people would share some stories and opinions. We thought perhaps people would be more likely to engage in the research with the shorter more open-ended format. How wrong we were! We received around 30 responses for the first two (the other four are still available). 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 (required by the ethics board) cost us a lot of participants! We have consulted with some of you to find out which resources you feel are most helpful. 

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. Absolutely! Those are really weird 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

Friday, February 24, 2017

Is autism a disorder, strength or personality trait?

by KM Igelström, PhD

On our research page, we recently put out a questionnaire about autistic adults' perceptions about their own autism. This is our preliminary analysis of the 29 responses that were submitted. The questionnaire is open until Feb 28 – please contribute if you want!

For this questionnaire we had one key question:

How do you view your own autism?

o   Asset/strength
o   P
ersonality type
o   Disorder/disability
o   Other (please describe)

Participants could pick more than one option, and there was space to elaborate on any thoughts or issues. We weren't interested in finding a "correct answer"; we just wanted to know how autistic people feel about it and get a feel for how many different perceptions there are.

This whole article and study focused on high-functioning autistic adults, and thus may not at all apply to children or adults with a greater degree of deficits.

Scientific considerations  

First, just to be hyper-scientifically super-correct, we need to make clear that this is not a publishable study and shouldn't be shared or cited as such. It's an explorative, preliminary study. Why?
  1. The selection of participants doesn't necessarily represent a cross section of autistic adults, because we recruited mainly in a few Facebook groups. 
  2. We haven't validated that participants have autism. In fact, we have included adults with formal diagnoses (14 people), those who identify as autistic but never got evaluated (6 adults), and those who were told by a health professional they may be autistic or have many autism traits (9 adults).   
  3. The number of participants (29 people) is a small number for an online questionnaire. With more responses, we would get a better understanding. (You can still do it...)
  4. Online surveys tend to attract people that care deeply about the issue, excluding the part of the population that do not actively engage in it.  

Anyway, if this was not a well-designed publishable science study, then why did we do it? Because it allowed us to listen, with an open mind, to whoever was willing to share something. It gave us fresh perspectives and new ideas. We want to connect with you and hope this is just the beginning of a dialogue that will grow and develop. 

Who responded? 

The overwhelming majority of participants were women. That's a bit funny, because the majority of autism studies contains more males than females. The male bias in autism research might be the result of autism being "more common" in males, but it might also be that females are less often diagnosed and that autism is expressed differently in women. So although we would have loved to see more male participants, we're also delighted to hear from so many women! 

25 females and 4 males responded to the questionnaire
Biological sex of participants

The majority of participants were from the English-speaking countries US, UK, Canada, Australia and New Zealand (22 people), but we also got responses from 5 people from Finland, and one each from Sweden and Germany. 


The majority were from the US, the UK and Finland, and the rest were from Australia, New Zealand, Canada, Sweden and Germany
Country of participants

The age of participants was fairly evenly distributed between 25 and 58, although a majority fell below the age of 40. The vast majority of those with a formal autism diagnosis had been diagnosed very recently. We can't really draw any conclusions from that, even though many adults feel they got diagnosed too late in life. In this case, it is also likely that newly diagnosed people are more likely to be active in the Facebook groups from which we recruited most subjects.

Age distribution of participants

A variety of response profiles

Nine participants viewed their autism as a combination of all options, 12 as a combination of two options, and 8 as only one option. The results and associated comments, for each option, are broken down and discussed below.

1. Autism as a disability or disorder

Almost all participants (25 out of 29) indicated in some way that autism was a disorder or disability for them. Five participants felt that autism was purely a disability, with struggles and challenges and no benefits in their lives. Seven people felt their autism was a combined disability and strength, and four people perceived their autism as a combined disability and personality type. One participant raised the important point that whether autism is an asset, disability or personality trait depends on societal expectations that vary from place to place and from time to time.

These were the most common reasons for perceiving autism as a disability or disorder:

Social challenges

Not surprisingly, many expressed problems with social situations. These included trouble with "reading" people, following the dynamics of group conversations, improvising in social situation, communicating, and making eye contact.

Sensory challenges

Sensory challenges are integral to autism, and were frequently cited as a source of disability by our participants. Problems with sensory sensitivities, sensory overload and sensory processing were familiar to many, as well as general processing difficulties. Participants pointed out that autism would be more of an asset and less of a disability if the environment was more sensory-friendly.

Failure of non-autistic people to understand or adapt to autistic people

Autistic people may have trouble understanding other people's minds, but what about theory-of-mind in non-autistic people? One of the most common inputs from this small group of autistic people was that the "neurotypical" mind is not equipped to understand the autistic mind, and that in itself makes autism a disability.

This highlights the stereotypical social deficit in autism, but it might also suggest that scientists should look into how non-autistic minds contribute to worsening the status of autism as a disability. One participant went as far as saying (paraphrased) "I think the neurotypical brain is a disorder", a conclusion which, while not scientifically correct, poignantly illustrates how the struggles autistic people face can turn them against the rest of society. Society does have a responsibility here.

Overall, participants with this opinion discussed topics like the expectations to fit in at social events, the expectation to comply with a particular unaccommodating expected work style, lack of knowledge in non-autistic people leading to misunderstandings or stereotyping, difficulties getting reasonable adjustments at work, and getting the right healthcare.


Effects on all aspects of life

Some participants, especially those who defined their autism as a pure disability/disorder, described how the limitations associated with autism affected every part of their lives. They described situations of having to quit or restrict work, or desperately wanting to connect and communicate but being unable to. Of course, such life situations come with great emotional loads and can cause co-morbidities such as depression. Women with a late diagnosis often have a rich and dramatic psychiatric history, owing to all the downstream effects and co-morbidities of autism.

2. Autism as an asset or strength

The majority (19 out of 29) found that their autism was at least in part also an asset or strength. Two participants felt their autism was purely an asset. Two participants expressed it as a different step of brain evolution with less emphasis on the social world.

The reasons for perceiving autism as an asset were mainly related to the information processing style that many autistic people seem to have. For example, participants said they can excel at work or interests through their strong ability to focus, passion about interests, pattern recognition skills, or attention to detail. Some expressed that the different way they see the world gives them the ability to see things that others miss, and to be creative and good at learning. Socially, participants expressed that their autism caused them to be perceived as honest and trustworthy.

Some expressed autism could be much more of an asset if the non-autistic world would be more accepting and educated about autism.

3. Autism as a personality type

We realized too late that the expression "personality type" was too vague. As one participant helpfully pointed out (slightly paraphrased): "Autism is also a neurological difference, which I don't think of as a personality type, but rather a brain type". Being neuroscientists, we sloppily viewed personality as a consequence of a natural brain variation, and didn't think about the semantics carefully enough. We'll learn from this mistake. 

Another related, relevant comment was that autistic people all have different personalities and that that contributes to how much of a disability autism is, even for two people with exactly the same intelligence and education. Another participant felt like calling it a "personality type" could lead to further stereotyping of what autism looks like. We understand those points too. 

About half of the participants defined their autism in part as a personality type (14 of 29). Eight people felt the autism was personality combined with both disability and strength, and six people felt the autism was personality combined with disability. 

The opinions often focused on how autistic traits can be seen as intertwined and inseparable from the personality. Some of the participants expressed that, as a consequence, the thought of a "cure" or "treatment" can be very offensive. 

We actually experienced this first hand when trying to find recruitment venues on Facebook, where a subset of group admins rejected our outreach efforts because our studies were interpreted as part of some effort to "change" autistic people or decrease acceptance of autism. It had literally never crossed our minds that autism research could be construed in that way. This is why scientists and autistic people really need to talk more.  

Some expressed that many autistic traits are personality traits that are not better or worse, just different, compared to non-autistic people. Several participants expressed it as a difference that affects how they see the world, and shapes their lives and relationships. It seemed like it is mainly when there is an inadequate level of acceptance, understanding or support that autism becomes a real disability.   

Summary

Because we're incurable scientists, we have to remind you that the questionnaire was too small and too limited to draw any wide-ranging conclusions. Our impression from this questionnaire, however, is that the subjective perception of autism varies very widely!

It is possible that people with more support or better coping strategies are more likely to be able to live with autism as an asset or positive/neutral part of the personality. On the other end of the spectrum, delayed diagnosis and poor support structures may be more likely to lead to the perception of autism as a crippling disability or an undesired part of the personality. This would be interesting to study further – look out for further questionnaires... (You can sign up for notifications here.)

A frightening proportion of participants seemed to more or less have rejected the non-autistic world, presumably after many bad interactions and unfixable misunderstandings. As scientists, we are especially worried, because we believe that we need more knowledge to bridge the gap between non-autistic and autistic people, and input from these important individuals is critical to this process.

Thanks for reading! Next up – report from the women's issues questionnaire. It also closes on Feb 28 so there's still time to take it... and we won't analyze it until after its due date :-)

P.S. Go here for all current studies and please consider participating!

Wednesday, January 18, 2017

When strengths become a barrier

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.”
As an autistic neuroscientist, I 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 your 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.