Did you know that in recent years, thousands of adults worldwide were diagnosed as autistic—many of them in their 30s, 40s, 50s, and beyond? Autism is often described as a childhood condition, yet countless adults are only just discovering that it’s been a part of their identity all along. Why does autism so often go undetected until adulthood? Let’s dive in
According to the CDC, In 2017, an estimated 5,437,988 adults in the United States were living with Autism spectrum disorder (ASD), accounting for approximately 2.21% of the adult population.
Between 2011 and 2019, the prevalence of Autism among adults more than doubled, increasing from 4.2 to 9.5 per 1,000 enrollees.
This significant rise in adult diagnoses highlights that many individuals are discovering their Autistic identity later in life. But why does Autism often go undetected until adulthood? Let’s explore this further.
For many of us who suspect we are on the spectrum, self-identify as Autistic, or pursue/receive a late diagnosis of Autism we may have went undiagnosed because of our ability to mask our Autistic traits
Some of us on the spectrum unconsciously learn to mask our Autistic traits and mimic Allistics, non Autistic people, as a method to cope or survive in a world which can be challenging to say the least.
For example, many of us will suppress our stims or look people in the eyes even though that feels uncomfortable.
As we age, many of us may realize that we have been masking our Autistic traits for all our lives. Some of us may lose the ability to mask as we become exhausted from lifelong masking.
This can lead us, or those around us, to suspect or realize we are Autistic.
Our Autistic traits may not become obvious until the demands we encounter in life exceed our capacity.
It is possible that through our childhoods we managed to struggle along without it being particularly obvious that we were struggling. As we age, life demands exceed our capacity, which makes us realize that we are Autistic.
When it comes to understanding Autism by experts, there is still a limited awareness and understanding of Autism, particularly in marginalized communities. Additionally, some information about Autism is described from the outside, of neurotypical people’s experiences of Autism, instead of from Autistic peoples experiences. This causes many of us not to see ourselves and our experiences represented in stereotypical Autism, leaving us not realizing that we are Autistic until later in life.
As a sidenote, as the understanding of Autism has evolved over the past 50 years, the diagnosis of Autism has evolved. This means that those of us who did not fit the narrow definition of Autism in the 1960’s, 1970’s or even the 1980’s, may have fit today’s definition of Autism if that definition was used in our childhood.
Our parents may have not believed or even realized that we were on the spectrum. This may have been caused by the limited information and understanding around Autism – especially back in the day. In some cases, our parents did not want to even think about us being on the spectrum because of the stigma that came with it, which was greater than it is today, back in the day.
The waiting lists to be screened and diagnosed as Autistic are long. There are not as many professionals who will screen an adult for Autism. Those who do screen for autism may use outdated stereotypes and use screening methods designed to screen children.
It is not uncommon to live your entire life on the spectrum and not realize it until you children are diagnosed with Autism.
When our children, or grandchildren, are diagnosed as Autistic, we may pick up that we have similar traits to them, leading us to realize that we are Autistic. Currently, Autism is believed to be largely genetic, meaning if a child or grandchild is Autistic, you are more likely to be Autistic.
