Everyone wants to be autistic these days

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Featured in Spectrum News

Today, an in-depth article on camouflaging in autism went online on the autism news site Spectrum. Several autistic women were interviewed, as well as Kajsa and a number of other researchers, making it quite a versatile piece, reflecting a very important issue that's close to the heart of everyone involved in Extraordinary Brains – not the least all our research participants!

Some results from our large questionnaire-based study on repetitive behaviors (stimming and special interests), that 342 of you participated in, feature in the article. We'll write more on that here soon – we're sitting on lots of news... 

Is Camouflaging a Balancing Act?

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

 
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I am a journalist writing a major feature in Spectrum on camouflaging, on the latest research and personal experiences. I would like to find people willing to share direct experiences. What are the costs or camouflaging versus the benefits? Is there anything else about it that you'd like to say?

Submissions closed – the piece was published in Spectrum and The Atlantic.

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. 

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).