by Kajsa Igelström, PhD
When we launched the Extraordinary Brains Project in January 2017, we weren't sure where to start. We had no online presence, no follower base, and not really any idea about what the autism community would find interesting or valuable.
We knew that we wanted to start with a simple preliminary study on how basic functions (such as sensory processing) interact with more complex functions (such as social function). It was hard to make a meaningful pilot study that wouldn't take an hour to fill out, so we compromised to make it quick and simple. This was our first questionnaire and the response rate was good – more than 130 people filled it out.
We also had a bunch of more qualitative questions, so we launched six small questionnaires with only 1–2 questions, and hoped some people would share some stories and opinions. We thought perhaps people would be more likely to engage in the research with the shorter more open-ended format. How wrong we were! We received around 30 responses for the first two 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!