Self-Diagnosis Resources
(or, Self-Diagnosis Is Relevant, Necessary, and Valid)
So, you think you may be autistic. What do you do next? Here are some of the resources that I find helpful in figuring out if you might be autistic as well as a little bit of information about the flaws in professional diagnosis that make self-diagnosis relevant, necessary, and valid.
These tests will help you figure out if you are autistic and will help build a body of evidence if you choose to seek professional diagnosis. Some of these tests are standard tests used to help diagnose you by professionals, some have been slightly modified to be more accurate based on how diagnosed autistics have answered, and some are not professional diagnostic tools, but rather tools developed by autistics that have been peer reviewed. You can click the test names next to the bullets to open a new window to the associated test, which all have automatic scoring.
- Autism Quotient (AQ)
The AQ is not specifically used to diagnose autism, but it is sometimes used as a pre-screening test to determine if it is worth the investment of time and money to seek diagnosis. When this test was developed 80% of the people who scored 32 or higher were diagnosed autistic. It is worth noting that some professionals feel this number should be as low as 22 and that not everyone who scores higher than 32 is actually autistic. This test is a great place to start. If you score below 22 you probably are not autistic. If you score between 22 and 32 you’re in a gray area and it may or may not be worth your time to continue. Over 32 and it probably is worth your time; you may ultimately not be autistic, but chances are you will identify with many aspects of autism.
- The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)
The RAADS-R is a revised version of a diagnostic scale used as an adjunct diagnostic tool for adults. At the time it was developed, only the AQ accounted for differences between adults and adolescents in diagnosis. The RAADS-R is not a diagnostic tool, but rather a screening tool like the AQ. It helps to have someone who knew you as a child to take this test with so that you can get a more accurate picture of whether specific traits were present as a child, but no longer are. This test is designed to account for adults who have learned to cope with autistic traits, which can cause professionals to overlook the trait because it is not readily apparent.
- Neurodiversity Iterative Process (Aspie-Quiz)
The Aspie-Quiz was developed to chart neurodiversity traits that appear in Autism Spectrum Disorder in order to create a diagnostic tool that was more accurate than available tools. Nearly 200,000 people participated throughout the development of the test. It tracks a large number of traits to build a profile of an individuals tendency towards neurotypicality or neurodiversity and has no inherent age, race, or gender bias affecting the results. Though not an official diagnostic tool, Aspie-Quiz is has a high rate of accuracy in predicting Autism Spectrum Disorder and is peer reviewed (1).
There is a lot more to self-diagnosis than whether or it is valid or invalid; we’re talking about something that is very complicated and has a lot of nuance. It has been noted, for example, that there is a very limited body of works studying the difference of autism in boys and girls; as of 2003, only 2% of studies examined gender differences in autism (2). As a result there are large numbers of under- and misdiagnosed women and non-binaries.
Cost is another common barrier to professional diagnosis, with some neuropsychologists charging multiple thousands of dollars. Diagnosis becomes unavailable to the uninsured in places like the United States. In places where healthcare is free, like the UK, there is often an extremely long waiting list to be seen by the appropriate professions. In the meantime, self-diagnosis is the only means available to gain access to necessary support.
There is also a lot of diagnostic bias within the medical community. Even professionals can have preconceived notions about race and gender, and that can affect their ability to properly diagnose individuals that do not fit their expectations. Using gender as an example again, the body of work on autism largely studies males and it inherently weights against the diagnosis of women who display a different phenotype. Professionals simply may not consider the differences because that is how they are trained (3).
Whatever the reason for self-diagnosis, when it is done in good faith it does not harm the autistic community and gives people access to the support they need, when they need it, and it often provides a path to professional diagnosis.
(1) Ekblad, L. (2013). Autism, Personality, and Human Diversity: Defining Neurodiversity in an Iterative Process Using Aspie Quiz. SAGE Open, 3(3).
(2) Thompson, T., Caruso, M., & Ellerbeck, K. (2003). Sex matters in autism and other developmental disabilities. Journal of Learning Disabilities, 7(4), 345–362.
(3) Goldman, S. (2013). Opinion: Sex, gender and the diagnosis of autism—A biosocial view of the male preponderance. Research in Autism Spectrum Disorders, 7(6), 675–679.
