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Why Autism Diagnoses Are Increasing: What Changed In 2013
Changes in diagnostic criteria drove an increase in autism diagnoses.
Autism has been in the spotlight as more public figures react to rising diagnosis rates. Some frame it as an epidemic, prompting speculation about causes. But what many don't realize is that much of the increase can be traced to two major changes in how autism is diagnosed.
Starting in 2013, people already diagnosed with ADHD could now also be diagnosed with autism, something that was not allowed previously. Further, doctors were now encouraged to consider a person's internal distress, not just observable externals, when determining whether their autistic experience qualified for diagnosis. These two changes account for a significant portion of the increase in autism diagnoses.
To receive a mental health diagnosis, a person must show evidence of impairment. For autism, this means behaviors associated with a differently wired brain must cause real life challenges--not just exist.
But how do we define impairment? During my medical training, that was a determination for the professionals to make. These standards were defined in the Diagnostic and Statistical Manual, Fourth Edition, the manual doctors used to determine mental health diagnoses. Originally published in 1994, the DSM-IV defined a mental disorder as causing 'clinically significant distress or impairment in social, occupational, or other important areas of functioning.' In the DSM-IV, impairment was assessed by external signs such as poor grades, job loss, or visible dysfunction. Internal distress, like working twice as hard as other just to keep up, was not considered.
It was left to the doctor to determine what elements of a patient's story were 'clinically significant' and whether they were in 'important' areas of functioning. If someone had autistic features but excelled in school or work and had relationships, they might be told they weren't impaired and did not meet criteria for a diagnosis. Their internal experience--how hard things felt or the emotional toll it took--wasn't relevant.
That changed in 2013 with the publication of the DSM-V, which heralded a critical shift in psychiatry: valuing a patient's internal experiences over mere appearances. While the fundamental definition of mental disorder remained the same, the DSM-V considered a person's internal suffering when evaluating them for clinically significant distress.
For example, in the past a student would have to be failing classes to be considered impaired. But after DSM-V, a student getting As only through intense effort and personal cost--exhaustion, anxiety, and emotional burnout--could also be understood as experiencing impairment.
This change meant that people who previously would have been dismissed now had their experiences validated. Jaimie Goralnick, MD, a child and adult psychiatrist in California recalls what it was like to consider autism prior to 2013. 'In my training, I was taught only to notice the people who fit a stereotypical image of what we think autism is, and that is only a small percentage of people who are autistic.'
Today, fewer people are denied a diagnosis because they make eye contact or have friends. Clinicians are learning to ask deeper questions: Is that eye contact forced and exhausting? Have they faced lifelong bullying or exclusion, even though they also have friendships? This has been particularly important in recognizing women with autism, who often present more subtly.
The second major change in DSM-V was the removal of the exclusion rule that prevented someone from being diagnosed with both ADHD and autism. Before 2013, meeting criteria for one ruled out the other. Since ADHD symptoms are often more visible, this led to many people's autism being missed. 'In my practice, there are many people who have been diagnosed with ADHD, and later realized they also are autistic,' says Dr. Goralnick. 'It's been life changing for them to be able to make sense of their experience in a clearer and more positive way."
Currently, the scientific literature estimates that between 50 to 70% of people with autism also have ADHD. (Hours 2022) The reverse is harder to measure due to under-diagnosis, but studies have found that between 30 to 65% of children with ADHD also show clinically significant autistic traits. (Clark 1999, Ronald 2008, Sokolova 2017).
This means that a significant number of people with ADHD are now also diagnosed with autism, leading to an apparent boost in autism numbers.
With autism in the press so often lately, it is important to understand that while diagnosis rates have risen, autism itself has always been with us. The 2013 changes in the DSM allowed us to get better at recognizing it. And that's vital, because it gives people a chance to understand themselves, heal from rejections they've faced, connect with the autistic community and access therapies designed for autism.
"Many of my patients are able to figure out ways to fit in and fly under the radar with some of their challenges,' Dr. Goralnick. 'They struggle a lot with depression and severe anxiety that just never quite responded to treatments, and there were a lot of things that just never made sense. But once we together realized they were autistic, the pieces came together and we began to understand their experience.'
Autism wasn't invisible because it wasn't there. It was invisible because we weren't looking for it in the right way.
