Your friends may have suggested to you, jokingly or not, that you that you might be “on the spectrum.” Maybe it’s because you made an awkward comment that seemed out of turn, or you did some quick math in your head.
If you really wanted to deflate the joke, you could have responded: “Doesn’t the nature of a spectrum imply that we are ALL on the spectrum?” You would have been technically correct. Though it does not win you many friends, take it from me: this is the best kind of correct to be.
You also would be within your right to remind your friends that lots of people – roughly 1% of the population – live challenging, but often fulfilling lives with some form of autism, and that we don’t need to stigmatize the condition any more than it already is. Most people seem to have at least a loose understanding what autism entails: poor social skills, great math skills, being Dustin Hoffman in the movie Rain Man. But we’ve come a long way since Rain Man.
First, let me introduce you to Dr. Simon Baron-Cohen. He is far from the only autism researcher out there, and he may not even be the best. But he is Borat‘s cousin, and therefore, the protagonist of this story.
Dr. Baron-Cohen and others in autism research have moved steadily from viewing autism as a single condition, to a range of related sub-conditions, to a spectrum with multiple dimensions of severity as of 2013, labeled Autism Spectrum Condition (ASC) or Disorder (ASD).1 ASC now encompasses what was formerly known as Autistic Disorder, the less severe Asperger’s Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (referred to as PDD-NOS, for obvious reasons).
Generally, ASC’s are characterized by difficulty with social skills and communication, engaging in highly repetitive behaviors, trouble with emotion regulation, and a tendency to experience sensory overload, sometimes with a turbulent reaction. Severe autism makes it it very difficult to function in jobs and maintain social relationships without a good deal of support. However, the milder Asperger’s may be expressed as an “obsessive” or “geeky” personality, and is found in higher degrees within STEM fields than the rest of the population.2 Having mild autistic traits may even be considered an advantage in these fields, which require above-average focus and attention to detail in order to succeed.
Based on this line of thinking, researchers now approach autism as a complex condition, a “broader phenotype” which a person can have in higher or lower degrees. Many, including Dr. Baron-Cohen, believe that these traits exist to some degree in everyone. And if a researcher thinks something exists, well, they’re going to try to measure it. Thus, the Autism-Spectrum Quotient, or AQ, was born.
Unlike its clinical counterparts such as the ADI-R, ADOS-G and CARS, the AQ can be self-administered in about 10 minutes – a questionnaire that anyone can fill out on their own time. The AQ contains 50 statements with which you “Definitely agree, somewhat agree, somewhat disagree, or definitely disagree.” At the end you receive your AQ score, which represents your level of autistic traits (higher scores mean higher levels of autistic traits).
Finally, something quantifiable you can show your friends who suggest to you that you may be “on the spectrum.”
I encourage you to take the AQ yourself, but with a few caveats to keep in mind:
- Your score is descriptive, not prescriptive. If you get a high score, you are not doomed to have difficult interpersonal relationships (friendships, romantic, etc.) for the rest of your life. A better indicator of this is how your relationships have been in the past, a personality test geared specifically towards your relationship style, or how hard you are working towards these relationships now. Similarly, if you get a low score, you are not doomed to suck at math. A better indicator of this would be a math test.
- This test cannot diagnose you with autism. If you get a very high score (see guidelines below), you may want to discuss getting a formal evaluation with your healthcare professional. Again, this is just to help you to organize your life so that you are ultimately happier. If you don’t see any advantage to a diagnosis, then don’t sweat it!
- This test has been well-researched, but it’s not perfect. It was made by smart people who think they understand autism to some degree, and it has been validated a number of times by correlation tests with clinical diagnoses of autism. But it is still prone to human error in its construction. It is difficult, for instance, to differentiate autistic traits from signs of social anxiety or obsessive-compulsive disorder.
So, what the hell do you get out of this?
You may not want to take this questionnaire because you feel it is framed negatively. Why would you want to know “how autistic” you are? Well, that’s a point I would like to address. Consider looking at it differently.
Everyone is going to have an AQ score (mine is 24). Imagine, if you will, that the AQ measures what it aims to perfectly: your level of autistic traits. A point I hope to already have driven in is that your score, and the scores of your friends, do not determine who you are. You and your friends are still the same people you were before you took the test. Therefore, what you are left with is a range of scores that may surprise you. Your friend, the one who is the life of the party and hates math, has a score of 20! That’s four points above average for neurotypical (non-autistic) people. Or maybe your friend, who crushed the math section of the GRE, scored a 12, indicating lower autistic traits than the average neurotypical.
Let me now introduce you to the concept of neurodiversity. Autistic traits are just one dimension on which we exist. And what I hope you will find, even from my small, informal study, is that we exist all along this continuum, and our personalities are expressed in a wide variety of ways. This is true not only for those in the neurotypical range, but for those in the clinical range as well. Beyond a very high score suggesting possible clinical levels of autism, it is very difficult to make any conclusions about a person based on their AQ score alone.
These traits, the ones you might have thought of as how far along a path you are to a disorder, can be seen another way: they are just traits people can have. We call them “autistic traits” because it it was through studying autism that we were able to identify them. If you have them too much, they can make your life more difficult. But they are not inherently negative, as you can see from the range of personalities and levels of success found along the spectrum. These are human traits that sometimes can be over-expressed.
What does your score mean?
A group of researchers combed through 73 studies that used the AQ3 and found that the average AQ score for the non-clinical participants was 16.94,4 while for the clinical population it was 35.19. However, the confidence intervals were large for both, meaning the statistical tests allow for the true population average for the non-clinical population to be somewhere between 11.6 and 20.0, and that for the clinical population between 27.6 and 41.1.
These are good benchmarks from which to assess your level of autistic traits. But as for what to do about this, I advise that if your score is below 35 and you do not have any other concerns about autism, no action is necessary. Except for this: consider the range of scores that fall within the range of neurotypical, and take joy in our neurodiversity.
Below are some plots of data from the AQ scores of myself, my friends and my family. If you want to add to my data trove, you can take the AQ test here.
All AQ scores in my mini-study so far.
Autism Speaks – Information and resources on autism.
QCHAT: Quantitative CHecklist for Autism in Toddlers – Like the AQ, this is not a diagnostic tool, but if you are concerned that your toddler (ages 18 to 24 months) might be autistic, this could give you an indication of whether to bring it up with a healthcare professional. Some studies have found that early interventions help people with autism become higher functioning.
Autism Self Advocacy Network – This article provides some context to the conversation around how to talk about autism and people with autism.
- Autism Spectrum Disorder, 299.00 (F84.0). In: American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. American Psychiatric Publishing; 2013.
- Baron-Cohen S, Wheelwright S, Skinner R, Martin J, Clubley E. The autism-spectrum quotient (AQ): evidence from Asperger syndrome/ high-functioning autism, males and females, scientists and mathematicians. J Autism Dev Disord. 2001;31:5–17.
- Ruzich, E., Allison, C., Smith, P. et al. Measuring autistic traits in the general population: a systematic review of the Autism-Spectrum Quotient (AQ) in a nonclinical population sample of 6,900 typical adult males and females. Molecular Autism 6, 2 (2015). https://doi.org/10.1186/2040-2392-6-2
- The average in the non-clinical groups was slightly higher than overall average for males (M = 17.89, CI: 16.7, 19.1) and a few points lower for females (M = 14.88, CI: 13.3, 16.5)3 (see above). Significant differences were not found between sexes in the clinical groups.
Image: ThisIsEngineering on Pexels