If you are reading this, there is a good chance that you or someone you know has expressed some curiosity as to whether you or they may be Autistic. This is just one of multiple posts covering the question of self-diagnosis, and we will be focusing on why it is so important to so many Autistic adults. 

As a society, one reality of the way that we treat Autistic people is that we only see signs of Autism through the lens of inconvenience. In practice, many Autistic people who might have benefited from more support may never have been considered for diagnosis because they did not get in trouble, or completed their work on time. 

For many Autistic adults, the only path to diagnosis comes through taking the step of recognizing that there are Autistic experiences with which they relate, and deciding that they want to learn more. So why opt for self-diagnosis? And why not go straight for an official diagnosis if it is so important? 

We will talk about the process of seeking an official diagnosis in another post. For now, let’s dive into some reasons why self-diagnosis might be a better starting point for many adults who are beginning to question whether Autistic is a word that describes them. 

One reality as we learn more about Autism and how many people are Autistic is that many Autistic people do not receive a diagnosis until later in life because nobody said they should be assessed as a child. Another reality of not getting diagnosed until later in life is that only children are entitled to a professional diagnosis under the law, so anyone who is not assessed in school likely won’t be given the option unless they seek it out. 

On top of needing to actively pursue a diagnosis, adults will likely need to pay a substantial cost which can go into the thousands of dollars. Such an option is simply inaccessible to many people who have rightly decided that they shouldn’t have to wait until they have a sufficient amount of money to try to answer that question more clearly. For people who cannot afford to spend money pursuing an official diagnosis, self-diagnosis is the only option available.

For some people, the journey of self-discovery is only meant to be an internal one. While at AGU, we strongly encourage anyone who wants to be open about their identity to do so, we also recognize that many people fear that the stigma of being labelled as Autistic can sometimes lead to mistreatment or material harm. 

For Autistic people who want to learn more about themselves but may also find themselves in such a challenging situation, self-diagnosis may feel like the safest way to think about those questions without inviting an unfair degree of scrutiny.

While for some people a medical assessment may offer a feeling of clarity that self-diagnosis does not, for others the question of self-diagnosis is not whether there is an objective assessment from a professional, but whether Autism helps to explain the way they navigate the world and see themselves in a way that other explanations have failed to achieve. 

If self-diagnosis helps us better strategize about how to navigate the world, how to build our executive functioning skills, or how to advocate for ourselves, then does it really matter whether a doctor has given the Autism label their official blessing? People who are primarily interested in self-discovery may find that formal diagnosis offers no benefits that are meaningful to them. They may also decide that a formal assessment is a priority for another time, but that they don’t want to wait until then to seek out more information.

Whether or not we receive a formal diagnosis, there is something to be said for finding other people who can relate to your experiences, particularly if you have spent much of your life feeling like other people experience the world differently without quite being sure why. Particularly if you have been made to feel like those differences are inherently wrong and not the way people are supposed to be. 

Finding community that celebrates us for who we are rather than trying to shape us into something different can make an enormous difference in navigating the world, and self-diagnosis is often a means by which people find that confidence. 

While self-diagnosis certainly does not mean instant confidence for anyone who engages in a process of self-discovery, the mere act of knowing ourselves better helps us do a better job of self-advocacy.

We hope this post has offered some reasons to consider the potential benefits of self-diagnosis if that is a path that you are interested in exploring. If you would like to see us cover more on the topic of self-diagnosis, or you would like to share your self-diagnosis experience with us then we would love to hear from you! Just drop us a line at hello@autismgrownup.com and let us know what you think.