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 here we will be taking a closer look at what constitutes self-diagnosis (also sometimes called self-identification), why we might choose to pursue it, what we can get out of it, and areas that require an official diagnosis. The goal of this post is to offer individuals a sense of direction as they chart their own path of self-discovery.

So let’s take a closer look at the concept of self-diagnosis and what it means in practical terms!

Self-diagnosis refers to the process of discovering one’s own Autistic identity through personal research and reflection, rather than through traditional medical tests. People who self-diagnose as Autistic have come to the conclusion that they are Autistic through intensive self-examination, considering their experiences in relation to others, and relating to experiences shared by other Autistic people. 

While there is no linear path to self-diagnosis, it is not uncommon for people who self-diagnose to go through an extensive reflection, and many individuals navigating diagnosis experience at least a degree of self-doubt. Yet self-diagnosis is also an incredibly valuable tool for people seeking to better understand how they navigate the world, or how to better meet their own needs.

One thing it is also important to emphasize is that when we talk about self-diagnosis and the benefits of self-discovery, we are also including people who ask the question and ultimately decide that they are not Autistic. As with any guideline we release, the important thing is not which answer you land on but that you feel comfortable and equipped to ask the questions that are most important to you.

The benefits of self-diagnosis can vary from person to person. For some people it might be the relief of finding an explanation that makes sense for challenges they faced in life that they could never fully understand. For others, it might serve as a helpful means to express their needs to the important people in their lives. For others still, it might help inform the way they advocate for their own needs or their own way of doing things. 

Let’s take a look at a few more potential benefits of self-diagnosis. You will likely find that some potential benefits are much more relevant to you than others, and that you may not consider some of these things to be very beneficial at all. 

The most important thing is determining whether you feel there is enough benefit to be worth the time and effort it will take you to find a satisfactory answer. 

So let’s think about what some of those benefits could include:

• A stronger sense of self

• A better knowledge of why certain situations might be especially difficult

• A roadmap for setting goals and building skills related to your needs

• A shared identity through which to connect with other people who have had similar life experiences

• A framework through which to seek advice from people who have had similar experiences

• A means of explaining to family why certain types of support are so important

• A means of explaining one’s own personal social preferences

• A means of learning about your personal needs

• A means of learning about your interoception

• A means of learning about your sensory sensitivities

• A means of learning about how best to grow your executive functioning skills

• A means of seeking informal support

It is also important as we discuss the many potential benefits of self-diagnosis to acknowledge some practical limitations. 

To be clear, when we talk about practical limitations we are not speaking in terms of whether or not self-diagnosis is “valid” (more on that in another post), but some practical outcomes that can only be achieved through a medical diagnosis. 

When it comes to practical benefits, the list is pretty short but can be crucial to the people who need it most. Most of the practical benefits that one cannot access through self-diagnosis are legal protections or benefits that can only apply to you if you have an official Autism diagnosis from a qualified medical professional. 

For Autistic people seeking a diagnosis as adults, the most common legal protection comes from the Americans with Disabilities Act, which legally requires employers and businesses to provide reasonable accommodations to people with disabilities upon request. 

While you are well within your rights to seek out accommodations as a self-diagnosed Autistic person, an employer or community space has no legal obligation to grant your accommodation without an official diagnosis. 

For many Autistic adults this practical limitation will either be irrelevant or the benefits of legal protection aren’t worth the cost of an official diagnosis. For others it might be important enough that seeking out an official diagnosis is a necessity.

We hope this post has offered a basic idea of what self-diagnosis looks like, what the benefits can be, and the primary limitations one must consider when relying on self-diagnosis. If you have questions pertaining to self-diagnosis, want us to share more, or want to tell us about your self-diagnosis journey then we would love to hear from you! Just drop us a line at hello@autismgrownup.com and keep an eye out for more of our self-diagnosis resources!