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:
- Please tell us if/how you use personal strengths to compensate for any challenges accompanying your autism.
- Are there any autism-related challenges that you find difficult or impossible to compensate for?
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."
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!