Part 1 of my Autism Diagnostics Research
The role of diagnosis has changed dramatically for autism since it’s inclusion into mental health disorders in 1980. Prior to 1980, it should be noted, patients were often diagnosed with schizophrenia, and even then, only severe cases of autism were considered. At the time, the estimated ratio was 1 in 2400. As of 1980, there were 6 symptoms for autism, and the individual had to present all of the symptoms to a certain threshold in order to be diagnosed.
Today, we have a list of 10 questions that are used to screen adults who suspect they’re on the spectrum. The screening test used in the data I have acquired to study the patterns of answers to those questions is shared below.
The data follows over 700 adults in 67 countries, from ages 17–64, with over 337 females, and 367 males.
A few caveats:
There were additional questions past the screening questions that were posed in the app to gather additional information, including ethnicity, family members with autism, jaundice at birth, and whether or not the results recorded indicated a classification of autism and a recommendation to seek further treatment. My goal was to attempt sensitive analysis on the information. It can be hard to trust a source for data if you know the data itself may be biased by mental health issues. I will be looking at and sharing insights on the data with the bias acknowledged, but I chose to honor the information given by the individuals involved, taking their description of their issues at face value.
Additionally, it should be noted that the questions themselves could have also created a bias. For instance, the gender question only allows for male or female. The autism community actually has a large and robust spectrum of gender fluid individuals and a large and growing presence in the LGBTQIA+ community. In my opinion, the lack of options showcased within the app could have influenced the results by forcing those with concerns about their mental health to have to conform to only those two options.
Furthermore it should also be noted that regardless of screening and proof of symptoms, it continues to be exceedingly difficult to get a diagnosis for autism as an adult, despite evidence showcasing that autism isn’t an epidemic. With improved accuracy, the ratio for autism has gone from 1 in 2200 to 1 in 58. Additionally, the resources for adults on the spectrum are mostly non-existent, even in more populated locations, discouraging a diagnosis that could both hinder job employment, despite legal protection, and getting access to medications that can help. The information we are missing about adults with autism needs much more study before definitive, effective solutions can be implemented.
Immediately we notice that a hypersensitivity to sound is the top score here. This can be interpreted by autistic individuals as a feeling of physical pain from intense sounds, to people who feel mentally overwhelmed, a feeling of static in the mind that makes it hard to think. The verbiage may have been simplified for this survey to help remove the bias of categorization to allow for more people to feel comfortable giving a confident answer to the criteria.
There’s a lot of controversy surrounding adult autism, especially for women. Women are much less likely to showcase what we consider to be the red flags for autism, due to the tests being created to cover the majority of the autism community, which is male. From what we know currently, males have a higher instance of autism, versus female. There could be a bias for these questions to help detect autism due to the prevalence of Males versus Females.
Note the comparison between those who presented as male, and those who presented as female. The marked difference between how genders interpret themselves, their symptoms, and how they struggle are seen here. My observations: Women are less likely to report symptoms due to a lack of trust in medical professionals to listen and diagnose what they’re sharing. Women are also much more attuned to emotion, making their statistics much more impactful for certain questions.
Interestingly, when we look at the data, there are 337 females, and 367 males. While there were less women than men, more women ended up with a diagnosis using gender neutral criteria. This supports the current frustrations within the autism community that women are historically under-diagnosed. Suggestions for accuracy improvement could be a second test showcasing what symptoms are more prevalent for women, and one for men, and administer a screening based on those two genders. Complications for screening would still be present, due to a lack of support for gender identity in science and health.
To be honest, the ultimate observations I came away with regarding this data is that there writing a screening for an individual to help diagnose mental health issues is very difficult. Verbiage has a huge role in guiding an assessment in an unbiased way. Additionally, the reliability of self-assessment is under immense scrutiny, due to the accuracy of individuals in being able to accurately describe their own mental state.
Ultimately, autism needs much more research, much more consistently, and it needs to be much more transparent and understandable. It’s difficult to assign a single value to a mental state, the intensity of a particular emotion or interpretation, especially when accuracy can fluctuate from person to person.
I would recommend a test that starts with the very first inquiry of autism traits, to the formal diagnosis that allows access to disability resources. In addition to being able to study the percentage of individuals who are concerned about having diagnosis criteria, we can track the amount of time it takes to get a diagnosis, as well as look for reports of symptoms that may be more prevalent depending on culture, gender, ethnicity, income, etc.
