Using #ActuallyAutistic on Twitter for Precision Diagnosis of Autism Spectrum Disorder: Machine Learning Study

Background The increasing use of social media platforms has given rise to an unprecedented surge in user-generated content, with millions of individuals publicly sharing their thoughts, experiences, and health-related information. Social media can serve as a useful means to study and understand public health. Twitter (subsequently rebranded as “X”) is one such social media platform that has proven to be a valuable source of rich information for both the general public and health officials. We conducted the first study applying Twitter data mining to autism screening. Objective We aimed to study the feasibility of autism screening from Twitter data and discuss the ethical implications of such models. Methods We developed a machine learning model to attempt to distinguish individuals with autism from their neurotypical peers based on the textual patterns from their public communications on Twitter. We collected 6,515,470 tweets from users’ self-identification with autism using “#ActuallyAutistic” and a separate control group. To construct the data set, we targeted English-language tweets using the search query “#ActuallyAutistic” posted from January 1, 2014 to December 31, 2022. We encrypted all user IDs and stripped the tweets of identifiable information such as the associated email address prior to analysis. From these tweets, we identified unique users who used keywords such as “autism” OR “autistic” OR “neurodiverse” in their profile description and collected all the tweets from their timelines. To build the control group data set, we formulated a search query excluding the hashtag “#ActuallyAutistic” and collected 1000 tweets per day during the same time period. We trained a word2vec model and an attention-based, bidirectional long short-term memory model to validate the performance of per-tweet and per-profile classification models. We deleted the data set and the models after our analysis. Results Our tweet classifier reached a 73% accuracy, a 0.728 area under the receiver operating characteristic curve score, and an 0.71 F1-score using word2vec representations fed into a logistic regression model, while the user profile classifier achieved an 0.78 area under the receiver operating characteristic curve score and an F1-score of 0.805 using an attention-based, bidirectional long short-term memory model. Conclusions We have shown that it is feasible to train machine learning models using social media data to predict use of the #ActuallyAutistic hashtag, an imperfect proxy for self-reported autism. While analyzing textual differences in naturalistic text has the potential to help clinicians screen for autism, there remain ethical questions that must be addressed for such research to move forward and to translate into the real world. While machine learning has the potential to improve behavioral research, there are still a plethora of ethical issues in digital phenotyping studies using social media with respect to user consent of marginalized populations. Achieving this requires a more inclusive approach during the model development process that involves the autistic community directly in the ideation and consent processes.

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