Not all autistics are diagnosed as children. Some of us are overlooked until adulthood and are often only diagnosed after a lot of introspection.
The CDC estimates that 1 in 54 children have been identified with autism. The key word here is identified. Although many “advocacy” groups and parents have been concerned with the increasing rate of autism diagnosis, there is a lot of evidence simply pointing towards better, more accurate diagnosis than there is for an “autism epidemic”. As diagnostic criteria improves, the sexism and racism that has often prevented diagnosis in people of color, women, and non-binary persons has been given less power (although there is still MUCH room to grow). Because the diagnostic criteria has improved, many more people are being diagnosed with autism that may not have been before, including myself.
Unfortunately, there are many autistic adults who were never evaluated as children and who reach adulthood without ever knowing about their autism. The improved spread of autism information has led many adults questioning whether they may be autistic, but much of the diagnostic criteria is still focused on children. With few providers willing to evaluate adults, these forgotten autistics are struggling to be heard.
This problem becomes even worse for adult POCs, women, and non-binary persons. Unfortunately, sexism and racism have had a major impact on who recieves an autism diagnosis. Most autism research was/is focused on white cis-gender boys. Because of this, many evaluative tools are skewed towards this group. For example, a question interested in discovering if a person has special interests, as is common in autism, might ask about trains or numbers. But many autistic women had very different special interests in childhood. One of my major special interests was pigs. Other girls may be interested in unicorns or ballet and although their interest is beyond what’s deemed normal for neurotypical girls, the category appears normal and their autism goes unnoticed.
So, if you’re an adult who is starting to question whether you may be autistic, your next question is probably “what now?”. The first place to begin is by doing the work and research to settle on a self-diagnosis. If you come to the conclusion that you are autistic, the next step is up to you. You can continue on as a self-diagnosed autistic, as is widely accepted throughout the autism community but often rejected in neurotypical circles, or you can seek out a professional diagnosis. The road to professional diagnosis can be difficult. Stress and cost can be major barriers for people, in addition to the sexism and racism that still plagues professional diagnosis. Ultimately, you have to decide what is possible for you and what is in your best interests. I felt I needed the validation of a professional diagnosis to be my happiest self, so I went forward with that journey.
Although self diagnosis is often discussed in the autism community, it is not always made obvious what people mean by this. In order to self diagnosis (as is also typically the first step in a professional diagnosis), one has to be prepared for A LOT of introspection. At times this can be uncomfortable, especially when it comes down to addressing your weaknesses. I sometimes still struggle with openly admitting my deficits.
One of the best places to start is with taking autism questionnaires (you can find links to the ones I used on my “Autism Questionnaires” page). These questionnaires can help illucidate some of the autistic traits you have that you may not have even known were related to autism.
My other advice is to listen to the experiences of as many other autistic adults as possible. One of the best places I found for this was on TikTok. Creators such as PaigeLayle, Auteach, PrincessAspien, and Potentia.Neurodiversity have made great educational videos about autism as well as their own personal experiences of being autistic. Another place to hear from other autistic adults is on FaceBook. There are many groups made for autistic adults that can provide support for you during your autism journey. Some of the FB groups I am apart of include “Actually Autistic Adults and Allies” and “Autistic/Divergent Woman Community”.
As you take self evaluations and hear the experiences of other autistics, a great way to organize all of this information is by writing out your autistic traits. Compiling a list of your autistic traits also comes in handy if you do decide to seek out a professional diagnosis.
The final step, after all of this research, is to compare yourself to the DSM-V criteria (you can find a link to this in my sources below!). If you fit the bill, congratulations! You are autistic!