How Research has got Autism all Mixed up
By: Ella Garth
Tags: Autism, Aspergers Assessment, Asperger, Autism Assessment, Autism Spectrum Disorder

How Research has got Autism all Mixed up

There is a saying in the Autism community, ‘If you’ve met one person with Autism, then you’ve met one person with Autism.’ Within the past decade, the general public has slowly begun to grow more accepting of the heterogeneous presentation of Autism Spectrum Conditions (ASC) that is so often at odds with the traditional, stereotyped view of Autism. But while this saying comes from a good place, what it actually means for researchers is something quite different: we don’t understand ASC.

ASC is characterised primarily by how a person interacts with others and is often described as living in a world that is ‘overwhelming’ from sensations and emotions. If you google ASC, you will likely be confronted by a giant list of potential cognitive, emotional and behavioural traits. And it’s highly likely that, if you’ve come across them, you’ve found yourself thinking, ‘That’s me!’, or ‘That’s someone I know!’ After all, some lists encompass almost every trait or behaviour under the sun, while others are more conservative, but may also be equally misleading.

The problem with ASC is that it has high comorbidity rates with other traits and disorders. And while this isn’t a problem in itself, it does make it difficult to research. For decades, researchers have studied ASC by comparing groups of Autistic people to groups of neurotypicals, and while this paradigm provides us with a general overview of the various ways in which Autistic people are different, it has also muddied the waters of what it means to have Autism.

For decades, ASC researchers have failed to control for the effects of common comorbidities, such as OCD, ADHD, Alexithymia, Introversion, and Social Anxiety. These traits often occur alongside ASC, but are considered separate and distinct conditions. The outcome of decades of research is that some practitioners diagnosing ASC have been testing for traits without the knowledge that the trait they are testing for isn’t even an autistic one.

For example, Reading The Minds Eye is a test that examines how well someone can interpret the emotional facial expressions of others and has long been used in the assessment and diagnosis of ASC. Yet how well someone can interpret emotional expressions is actually characteristic not of Autism, but of Alexithymia. In fact, you can be autistic and read facial expressions as well as any neurotypical, but if you have Alexithymia you will likely struggle to do so. It’s not that ‘if you’ve met one person with Autism then you’ve met one person with Autism’, but probably more ‘if you’ve met one person with Autism then they’re probably different to someone with both Autism and Alexithymia.’

Testing for Alexithymia should be commonplace in all Autism assessments, as it co-occurs in approximately 50% of individuals with ASC and has its own list of potential complications (including a lack of empathy, another trait often mistaken for Autism). However, how well one can or cannot interpret facial expressions should never be used to decide whether an individual has Autism. Alexithymia is a distinct and separate condition.

In addition, introversion is a trait that appears in approximately 20% of the population, but that characterises up to 75% of Autistic people. When researchers focus only on the differences between Autistic and Neurotypicals, traits of introversion, as well as other commonly occurring conditions also get thrown into the mix, such that introverted individuals will score significantly higher on the AQ test, as well as various other measures of ASC, than extroverted people.

This confusion in the research has barred some individuals from getting a diagnosis who otherwise should have, and has likely also increased the rate of false-positive diagnoses of ASC. This failure to control for comorbid conditions has resulted in the heterogeneity of autistic symptoms we know today, and it’s going to take a lot of work to detangle.