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! 
 

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. 

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

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).

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).

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