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 self-diagnosis is valid. 

If you have been exploring the topic of self-diagnosis, you may have heard that it can sometimes be a topic of controversy. 

Here’s a few examples of the types of arguments you might have heard against self-diagnosis:

• It is an armchair medical diagnosis

• It is taking away recognition and benefits from “real” Autistic people

• It is appropriating Autistic identities

• It is just an excuse to act entitled

At AGU, we strongly advocate for people to explore the journey of self-diagnosis if they feel it might help them better understand themselves, and one way we feel we can help do that is through examining some of these arguments and reinforcing some facts as to why self-diagnosis can be so beneficial on its own. 

It’s worth remembering as we explore these answers that the process of self-diagnosis is about each individual finding the answer that matches to their own experience, and that self-diagnosis does not presuppose any particular outcome or method of self-assessment other than that it is a topic the person in question wants to learn more about. So let’s dive right in!

If you reach adulthood without getting assessed, odds are the only way you will ever get assessed is by seeking one out yourself, which means you must on some level decide it’s likely enough you are Autistic that it’s worth pursuing the arduous and costly process of official assessment. 

Even if we set aside that the cost barriers alone exclude many adults from ever receiving an official diagnosis, we must acknowledge that any adult who does seek out a formal diagnosis has likely gone through a considerable process of self-discovery that would eventually lead to an official diagnosis. 

The point is not to say that there is no value to an official diagnosis, but rather that self-diagnosis is guided by our sense of self in much the same way choosing to pursue an official diagnosis is, and that our knowledge of self is an essential component of our self-discovery whether or not a doctor gets involved. 

Many of the negative claims around self-diagnosis play on a narrative of people getting special help when they don’t really deserve it. Setting aside that it’s OK for people to get special help if they need it, or that it greatly over exaggerates the benefits people who are diagnosed as Autistic received, it also ignores the fundamental facts of the situation. 

The bottom line of self-diagnosis is that it confers no legal benefits or protections and nobody is obligated to meet an accommodation request for someone who is self-diagnosed. 

Even though it would be nice if we could accommodate people who do not have an official diagnosis, the bottom line is that this myth preys on the fear that someone is out there receiving benefits who doesn’t deserve it, when the reality is that such a situation would never be possible in the first place and a self-diagnosed person by definition cannot access any of the legal protections or benefits that would apply to a medically diagnosed person.

This reductive take seeks to frame people who self-diagnose as eager to adopt an Autistic identity when the reality is that people who self-diagnose are simply searching for an answer and considering the possibility of whether or not they could be Autistic. 

It is also true that many people interested in finding the answer struggle with self-doubt and may months or years of reflection before they feel comfortable stating anything definitive. 

This argument suggests an inherent selfishness or desire for special treatment that comes with exploring self-diagnosis, when the reality is that many people who pursue self-diagnosis do so because they feel like they’re already treated differently!

One unfortunate reality of seeking out self-diagnosis is that many people who are not Autistic may not understand why someone would seek out a self-diagnosis and do not see it as a valuable end in its own right. 

One ulterior motive that sometimes gets assigned is the suggestion that someone self-diagnosing just wants to use the Autistic label to behave in an entitled manner. Autistic people who are reading this right now may laugh knowing just how much extra work they do to try to accommodate Allistic people’s social preferences and norms. The reality of self-discovery is that far from an excuse to act entitled, it may be an important reason to be more active in practicing self-advocacy to meet one’s own needs. 

The better we understand our own needs, the better we can advocate for ourselves when we need to. And while some people may view that as entitled behavior, we can rest assured knowing that taking steps to ensure our own needs are met is perfectly reasonable and a valuable benefit of self-discovery.

For those who are considering self-diagnosis and have perhaps felt some concern about the ways it might be “controversial,” we hope this post has dispelled some myths around the supposed harms of self-diagnosis and offered a sense of confidence in finding the answer that is right for you. 

If you would like to hear more about the validity of self-diagnosis or want to share your own thoughts then we would love to hear from you! Just drop us a line at hello@autismgrownup.com and keep an eye out for more self-diagnosis resources.