Autism – Associated Conditions
Example: Autistic people are often diagnosed with anxiety too, but it’s unclear if the anxiety:
(1) shares a common origin with autism;
(2) stems from social or societal challenges that come with being autistic in a neurotypical world;
(3) results from behaviors developed to cope with autism and (2); or
(4) if there’s a cause independent of autism entirely.
In some cases, a doctor or therapist might be able to make an educated guess for the category and use that as context for treatment
This category is a bit of a catch all, encompassing many unknowns. The authors point out that there is much research to be done within this category.
“An artifact of diagnostic process or trends”: The diagnostic criteria has changed over the years for ASD, most recently in 2013 with the DSM-V, the manual for diagnosing mental health conditions and includes neurodivergent conditions as well. Trends in research may also impact what diagnoses are given to an individual. Previous diagnoses are not consistently handled when a new diagnosis of ASD is given.
When someone receives a late diagnosis of ASD, they have likely received one or more diagnoses previously. Two things can happen to these previous diagnoses: (1) diagnostic accretion: keep the original diagnosis or (2) diagnostic substitution: replace the original diagnosis with ASD .
I feel the authors make a really important point here: “In population level data, [autistic] individuals may carry previous diagnoses as an artifact, but not truly have these conditions that alter…treatment approaches.” Meaning that some of the link found between autism and other diagnoses might be due to old diagnoses that no longer apply, but stick around in the data and charts (keeping a diagnosis, diagnostic accretion, when it should have been replaced, diagnostic substitution! I’m not making you learn jargon for nothing, I swear.). The impact of these artifact diagnoses reaches from research done with this data to the individuals carrying these potentially outdated diagnoses – at the very least altering their treatments.
I have experienced a version of this personally – I was initially diagnosed with anxiety and depression, and took medication for several years. In hindsight, I feel we were treating symptoms caused by a “resulting co-occurrence”. Once I received my autism diagnosis as well (and I maintained my anxiety and depression diagnoses),
“I wanted to see what my baseline was without medication and within my new context of autism. My anxiety and depression have lessened in a way I was never able to achieve with therapy or medication before, I believe primarily due to working within this new autistic context.”
Yet, almost every time I visit the doctor, they want to put me on a this antianxiety or that antidepressant – but personally I feel this is unnecessary and perhaps even counterproductive at this time. My anxiety doesn’t seem to be caused by an innate chemical imbalance, but by having to cope with the sensory and social challenges I face in the world as an autistic person and the behaviors I developed in response.*
* I admit I don’t know for sure that my anxiety and depressive episodes aren’t caused by a chemical imbalance. But for the years I was medicated, my GAD-8 and PHQ-10 (anxiety and depression scales, respectively) were high and varied only a handful of points over the course of those two years. Those scores are many points higher compared to where I rate now, post-diagnosis. And there’s a subjective change as well: the anxiety feels different now. It’s still a part of my daily life, but its impact is less. And this all isn’t to say I wouldn’t try medication again in the future – I would.
“This inaccuracy in determining co-occurrence can go in the other direction too – autistics, especially girls and women, are often misdiagnosed at first and some may never receive a professional diagnosis of autism.”
The authors don’t mention self-diagnosis. However, self-diagnosis is important particularly because of the other inequalities for autistics in access to healthcare. An autism diagnosis might be barred for financial/insurance reasons, or even because your primary care physician refuses to refer you to a specialist for a diagnosis. An individual’s treatment is impacted immensely if they never receive a diagnosis, and the difference in access to the effective treatments likely impacts their co-occurring health conditions, perhaps in a more severe way than other autistic people. As I mentioned above, my anxiety and depression were much worse, and very little seemed to help, before I had the context of autism.
As data science and big data is on the rise, sorting out instances of inconsistent prior diagnosis change or retention, finding and collecting self-diagnosed data, and collecting data collected over the course of weeks, months or years (longitudinal data) from the autistic community will be very important, however challenging, if we hope to gain an accurate picture!