There are many different reasons that a person on the spectrum may reach adulthood undiagnosed. Autism is such a familiar term these days that it seems impossible for people to remain undiagnosed; however, it is very common that autistics live most of their lives without confirmation in the form of an official diagnosis.
Asperger’s Syndrome (now classified as simply ASD in the DSM-V) is a fairly new diagnosis in terms of the medical field. It didn’t gain mainstream understanding or prevalence until just a few years before it was removed from the DSM in 2013. It wasn’t until 1994 that the condition was even included in the DSM for diagnosis. This would of course inhibit children born before this time from receiving a diagnosis; furthermore, it can take up to twenty years for new medical knowledge to find its way into practice.
Lack of Knowledge
We don’t tend to think anything of how we have been our entire lives, nor do our parents or caregivers. When something is innate to us, it is our “normal.” Granted, the majority of autistics know and have known that they are different from others around them as they can easily observe the evidence of this fact daily. However, being different could simply be one’s personality, and that is what many people on the spectrum believe until learning more in depth what autism really means. It is often a moment of epiphany for an adult on the spectrum when he or she encounters a post or blog on social media written by an autistic person that brings him or her to the awareness that those differences are more than just personality quirks.
For both social and biological reasons, girls with autism present differently than do boys on the spectrum. While boys may collect information on dinosaurs or train schedules, girls read, create art and/or music, and may even be interested in make-up or fashion. These are special interests for girls on the spectrum just as collecting information is a special interest for boys on the spectrum, but aside from the obsessive nature of these interests, it of course does not look like the type of ‘different’ that should be checked off of a professional’s list. So, the diagnosis is missed.
Girls also tend to cling to a friend or two while boys may stay alone. Girls are not given the social leeway to explore their interests the way boys are, being given gendered toys that encourage entertainment, housekeeping, parenting, and dress-up. Many aspie female adults recall being “tomboys” in childhood, often resenting being pushed into traditional feminine roles that are social in nature. As a result of this socialization, girls learn to communicate more interpersonally than boys do, but they struggle significantly compared to their neurotypical female peers.
Barriers to Diagnostics
Even if someone is aware he/she is on the spectrum, he or she does not have an easy path to diagnosis. There is very limited access to professional screenings for adults, and when available, they tend to be very expensive. Many insurance companies will not cover an autism screening for adults. Some people are content just knowing themselves without feeling the need for a diagnosis, some simply cannot afford it, and still others are unable to find a doctor who screens adults within a reasonable distance. Even when someone is able to be screened, stereotypes of how autism presents in adults often preclude people from being diagnosed.
What to Do
Stereotypes about autism and how it looks from person to person have been given the floor in conferences, in medical literature, and in mainstream publications written by neurotypical people who haven’t taken into account the individual personality, interests, social and cultural norms, and environmental factors which combine to form the identity of the individual autistic person.
In a world where social pressure is the most powerful engine for change, autistic people are at a disadvantage, both as a minority and as a neurotype of people who often operate outside of social conventions. Neurotypical allies and loved ones of people on the spectrum can drive this kind of change if they will use their privilege to usher autistic voices into the mainstream by sharing articles written and informed by authentically autistic advocates and educators.