AUTISM SELF-DIAGNOSIS…YAY OR NAY?
WHAT IS SELF-DIAGNOSIS?
Self-diagnosis means diagnosing yourself with a condition. A professional, official, clinical, or formal diagnosis in comparison means that a professional diagnoses you.
Self-diagnosis can be and is done with many conditions. Most people have at some point in their life self-diagnosed with a cold, for example. Self-diagnosis is part of most people’s everyday life – they just don’t realize it because some self-diagnoses are accepted and normalized in our society.
Autism self-diagnosis, more than anything else, means getting educated about autism, doing research, and learning.
What is autism? How does being autistic present internally and externally? What are all the possible autistic traits? Which traits does one have to have to be autistic, and which are common among many autistics but not shared among all? What are the possible variations in the presentation of each autistic trait? What are common co-occurring conditions that may get confused with autism? What are the stereotypes? What is misinformation, outdated information, and incomplete information? And where do you fit in all this?
All of the information one uses to self-diagnose as autistic needs to come from reliable sources. Because if one bases their self-diagnosis on false information, they may get a misdiagnosis. The same is true with information professionals use to diagnose.
Self-diagnosis also means being open to a negative result. A self-diagnostic process doesn’t look for confirmation. It looks for the truth, even if the truth isn’t what one thought, expected, or wanted. As such, a self-diagnostic process does include also looking at other conditions that might fit one’s experiences as possible diagnoses. The same goes for an official diagnosis.
It is vital to avoid confirmation bias during a self-diagnostic process just as it is during a professional diagnostic process.
WHAT IS SELF-DIAGNOSIS NOT?
Self-diagnosis is not a uninformed spontaneous decision. Self-diagnosis is not quick and easy. It is not done without thoroughly educating oneself first so one can be as sure as possible.
Someone who feels they recognize themselves in something autistic and immediately declares that they are autistic too is not self-diagnosing. That’s self-declaration. Such realizations can be a step towards self-diagnosis, but they aren’t self-diagnosis. Self-diagnosis is a diagnostic process.
Self-diagnosis is not done to get attention, because someone wants to be oppressed, to gain any kind of advantage, or for any other possible harmful reason.
A non-autistic person knowingly falsely declaring themselves autistic is not self-diagnosing. They are lying about being autistic.
Self-diagnosis itself is not harmful to the autistic community.
Some people use the term “self-diagnosis” to refer to things that aren’t actually self-diagnosis. This does create problems, and it needs to be addressed. At the same time, we need to be very careful to not gatekeep the realization that one is autistic.
Finding the right balance between the two can be incredibly difficult. There is no one simple answer to “How do we ensure every autistic person gets to realize that they are autistic, is welcome in our community, gets the support they need, with or without an official diagnosis…and also make sure that people who aren’t autistic don’t abuse this label?”
WHY DOES SELF-DIAGNOSIS EVEN EXIST?
Self-diagnosis became a thing because of serious and ongoing problems with the official diagnostic process of autism. The ongoing refusal of the people in power of this process to fix these issues goes hand in hand with this.
The ongoing fight for the liberation of autistic people plays a role in self-diagnosis becoming more common. Autistic people are fighting back against non-autistics having power over us, deciding our lives for us, gatekeeping our own neurology, and profiting off us without supporting us properly. Taking back some diagnostic power is one form of autistic liberation for some autistic people.
The digital age also empowers more autistic people to self-diagnose. Information and resources are now readily available not only to formally educated professionals but to anyone who can find and process them.
WHY DO SOME PEOPLE SUPPORT SELF-DIAGNOSIS?
“PROFESSIONAL DIAGNOSIS CAN BE UNAFFORDABLE.”
Not everyone can afford an official autism diagnosis. Not everyone can afford health insurance. Not every insurance covers everything, in full, or at all. Insurances may have deductibles and co-pays. The financial accessibility of an official autism diagnosis varies hugely by country. If someone doesn’t have that financial access, they may be unable to get a professional diagnosis.
“PROFESSIONAL DIAGNOSIS CAN BE INACCESSIBLE.”
Depending on a person’s circumstances, the official diagnostic process can be a completely impossible undertaking for autistic people. It’s hours of repeated appointments, travel, waiting, tests, social interaction, asking and answering questions, being questioned about your every struggle, suffering, weakness, lack, deficit. Additionally, this all often happens in an unfamiliar, inaccessible environment.
Some autistic people manage this fine. Others struggle through it. And for some, it is not doable. I was lucky that I was somewhat healthy when I got my diagnosis, so I managed. It took me months to recover, but I made it through. If I had to get a diagnosis today, I don’t think I would be able to make it through the process.
Additionally, there are problems like several years long waiting lists, closed waiting lists due to too much demand, unreachably far away diagnostic spaces, lack of qualified professionals for the diagnostic process, doctors who refuse to write referrals, and so on and so forth.
“PROFESSIONAL DIAGNOSIS IS BIASED.”
Autism was originally considered a childhood disorder. Moreover, it was seen as a male thing (you can thank Simon Baron-Cohen with his ‘Extreme Male Brain Theory’ for that). Autism was also first described and diagnosed in white circles.
These biases still exist today. Yes, advocates and activists work incredibly hard to dismantle them, and are making progress. But it’s too little too late for many autistic people.
Girls and women are still under-diagnosed, and don’t even get me started on trans people. Adults are getting diagnosed more now, but it’s still difficult to find capable professionals for an adult autism diagnosis. Anyone who isn’t white may struggle to get an autism diagnosis. BIPOC are horrendously under-diagnosed. And besides not getting diagnosed at all, getting misdiagnosed with other conditions also happens a lot.
All of these biases mean that anyone who isn’t stereotypically presenting, cis, male, white, and a child may not receive an official autism diagnosis, even though they are autistic.
“SELF-DIAGNOSIS CAN BE A STEP TOWARDS PROFESSIONAL DIAGNOSIS.”
For many autistics, self-diagnosis is a step towards a professional diagnosis. Children get taken to professionals by their parents or guardians. If you are an adult, you often need to actively seek out a diagnosis yourself in order to have a chance at getting one. Without self-realization first, to start the process, a professional diagnosis would never happen for many adults.
Depending on each autistic person’s individual circumstances, this self-realization has different degrees. Some may stop at “Maybe I’m autistic. Let me find a diagnostician.” Others do all the research, engage with the community, and go all the way to self-diagnosis before deciding to eventually go through the official diagnostic process.
“SOME AUTISTIC PEOPLE DON’T WANT OR NEED A PROFESSIONAL DIAGNOSIS.”
Some self-diagnosed autistic people don’t want a professional diagnosis because such a thing on your record often leads to discrimination.
In some countries an autism diagnosis counts as a pre-existing condition. Insurance companies use this to justify charging higher, often unpayable rate, deductibles, and co-pay – or straight up deny coverage to autistic people.
Depending on country, it is required to disclose a known autism diagnosis in certain situations – like when getting a driver’s license, or for some jobs. The diagnosis can then be used to justify autistic people participation.
These are only some of the reasons, why some autistic people avoid getting an official diagnosis.
A professional diagnosis can bring many positive things into an autistic person’s life. It can open the door to official supports. It can bring a sense of validation and confirmation. A professional diagnosis can connect autistic people to other autistics. It can lead to self-awareness, understanding, self-acceptance, and many more great things.
But not every autistic person wants or needs a professional diagnosis for those things. Some autistics are quite happy just being self-diagnosed. People can know that they are autistic, find understanding, awareness, acceptance, support, and community among other autistic people without a, usually non-autistic, stranger giving their “seal of approval” first.
We are so used to the autism tragedy narrative, the pathologization of everything autistic, that it’s easy to forget that autistic people who live happy, healthy, autistic lives outside of it exist. But they do! And that’s actually a good thing.
Some autistic people don’t see any medical side to autism at all and completely de-pathologize it. They instead compare it to being LGBTQA+. I strongly disagree with this and do see autism as a condition (not a disease or disorder), but if this is a personal reason for a self-diagnosed autistic person to forego professional diagnosis, that is their right.
WHY DO SOME PEOPLE OPPOSE SELF-DIAGNOSIS?
“SOME PEOPLE ABUSE SELF-DIAGNOSIS.”
Some non-autistic people may claim that they are, and then go on to spread misinformation about autism, and/or speak over actual autistic people. Their claim of being autistic gives their words a certain validity when talking about autism, which can make it extremely difficult to convince others that they are really spreading misinformation.
This is harmful, and it needs to be acknowledged and addressed.
However, the conclusion that self-diagnosis is the problem in this scenario is false.
Self-diagnosis isn’t the reason why this happens. And not accepting self-diagnosis doesn’t stop this from happening either. Non-autistic people abusing self-diagnosis doesn’t mean self-diagnosis is bad. It means abusing self-diagnosis is bad.
I have witnessed self-diagnosed autistic people harm autistic people.
I have witnessed professionally diagnosed autistic people harm autistic people.
I have witnessed non-autistic people harm autistic people.
Anyone, autistic or not, professionally diagnosed or not, needs to get well educated about autism before they start spreading any sort of autism information. Nobody, autistic or not, professionally diagnosed or not, should harm autistic people.
The problem of people spreading misinformation isn’t created by self-diagnosis.
The problem of people speaking for and over autistic people isn’t created by self-diagnosis.
These problems are created by people who decide to do bad things.
We should fight against that instead of falsely blaming self-diagnosis.
“ONLY PROFESSIONALS CAN DIAGNOSE AUTISM.”
Some people oppose self-diagnosis because they believe only professionals are qualified to diagnose autism. To this I say that we should free ourselves from the belief that professionals, especially non-autistic professionals, are infallible. Or even adequately knowledgeable on autism.
The tools professionals use to diagnose autism are based on decades of misinformation, incomplete information, biased information, outdated information – put together by non-autistic people.
Lots of autistic people get told they aren’t autistic by professionals.
Many professionals who are allowed to give an autism diagnosis know very little about autism.
Many professionals know less about autism than many autistic people.
Professionals are human beings with information stored in their brains – just like any of us. The information on which a professional autism diagnosis is based isn’t only available to professionals.
Non-professionals can access this information.
Non-professionals can learn the exact same things as professionals (or more).
So logically, non-professionals absolutely can be able to correctly identify themselves as autistic.
Can people who self-diagnose be wrong? Of course!
Thinking one knows something, being 100% certain, only to eventually learn that one was wrong after all is a very normal part of the human experience. It’s not automatically harmful to be wrong!
The autistic community doesn’t get harmed by a non-autistic person genuinely, though falsely, believing that they are autistic. Harm only comes from possible actions of that non-autistic person – like if they spread misinformation about autism. That should be addressed, because that is the problem – not a false autism self-diagnosis.
And never forget: professionals can be just as wrong with their official diagnosis!
Every human being has the potential to be wrong.
That’s not a valid reason to oppose self-diagnosis, just as it’s not a valid reason to oppose official diagnosis.
“SELF-DIAGNOSED AUTISTICS TAKE RESOURCES AWAY FROM ‘REAL’ AUTISTICS.”
Some people oppose self-diagnosis because they feel self-diagnosed people are taking away resources from professionally diagnosed autistic people. I don’t understand how they come to this conclusion in the first place, because without a professional diagnosis, there is no official support. So this just doesn’t happen.
But.
Even if a self-diagnosed autistic person gets a resource that a professionally diagnosed person doesn’t get, they aren’t “taking it away from them”. All autistics deserve the support they need.
In fact, nobody who has a need should need a diagnosis to get their needs met.
Whether they are autistic or not.
Internalize that.
Why are there not enough resources? Not because too many people need them. Not because too many people who don’t need them claim them. It’s because the people in power to make enough resources available to everyone who needs them choose not to do so. Understand who the real “enemy” is. It’s not self-diagnosed people.
“PEOPLE WHO AREN’T AUTISTIC SHOULDN’T CLAIM THEY ARE AUTISTIC.”
Some people oppose self-diagnosis because they don’t want anyone who isn’t autistic to just be able to claim that they are. I don’t think any of us want non-autistics claiming that they are autistic. But what are you really going to do about it? And is what you are doing helping autistic people? Or is it doing more harm than good?
How can we prove someone is actually autistic?
How can we prove that someone isn’t?
The simple answer is: We can’t.
Whether or not someone has, or claims to have a professional diagnosis, ultimately there currently is no way to prove whether or not someone is autistic. There is no blood test, X-ray, CT-scan, gene test, etc. I doubt there will ever be one such test that can determine with 100% certainty whether or not someone is autistic, but such a test definitely does not exist today.
So what we are left with is questioning people’s autistic status based on – what exactly?
Even professionals don’t agree amongst themselves!
What are the criteria you deem 100% certain for 100% of autistic people that you can ever be 100% sure whether someone who says they are autistic really is or not? Were these criteria created by non-autistic people, like the entire official autism diagnostic?
Do you really think you know anyone well enough to make such a statement? Do you want to be the kind of person who falsely accuses an actual autistic person of faking their autism? I know that I don’t.
When we start questioning autistic people’s autistic status, we always end up harming autistic people. There will always be something about every autistic person that can be used against them, to declare them non-autistic. Even if there is nothing, people will simply make things up.
Questioning someone’s autistic status is already being used as a weapon. It’s unacceptable. It doesn’t stop people who want to lie about being autistic from doing so. Nothing does. But it does great harm to actually autistic people who get targeted and have their autism questioned.
I understand the urge to want to debunk people who are being harmful. I do so not based on whether or not they are autistic, but instead based on what they say and do.
“PEOPLE SHOULDN’T CALL IT SELF-DIAGNOSIS. JUST SAY YOU SUSPECT YOU MIGHT BE AUTISTIC.”
Some people have no problem with people suspecting they might be autistic but they oppose the term “self-diagnosed”. They say people who suspect they might be autistic should use terms that make that clear instead of the term “self-diagnosed”.
I disagree with this demand simply because the term “self-diagnosis” exists precisely to make it clear that one isn’t professionally diagnosed.
Furthermore, this belief that autistic people must always remain “suspecting”, questioning, doubting, unsure, unless they get confirmation from a, usually non-autistic, stranger to be considered valid, goes counter autistic liberation.
SO…SELF-DIAGNOSIS YAY OR NAY?
In my ideal world, there would be a free accessible professional official diagnosis for every autistic person. There would be a total re-work of the diagnostic criteria and process by autistic people for autistic people. There would be autistic professionals diagnosing their autistic peers, and train more autistic professionals. There would be no discrimination against autistic people. There would be accommodations and supports for everyone, and all our needs would be met.
That’s my ideal world and something we should definitively work towards. It’s not the current reality though, and it won’t be reality for many years, likely decades.
Every autistic person deserves the chance to understand that they are autistic. Every autistic person deserves to live a happy, healthy, autistic life. Every autistic person deserves self-understanding, self-acceptance, self-advocacy, peer support, community, acceptance, inclusion, accommodation, rights, justice – all of the things that knowing you are autistic opens the door for.
I don’t agree with people who don’t have any standards at all for self-diagnosis beyond “I saw this autistic character and just knew that I was autistic, too.” Self-diagnosis is, and in my opinion must be, more than self-declaration. But when it is more than that, when it is an actual self-diagnostic process, then I at least currently accept self-diagnosis for all the reasons outlined in this post.
I am currently not “for” self-diagnosis – nor am I “against” it. I experience this topic as much too complex for single words. Furthermore, self-diagnosis doesn’t have one universally agreed upon definition. Thus I can neither universally “agree” nor universally “disagree” with it. That’s why I hope this piece makes my stance on all the individual points clear.
I didn’t always think like this. I used to be very opposed to self-diagnosis. I am happy to say today that I have learned. I educated myself, and others have helped to educate me. I hope that this piece helps to understand this controversial topic.
One thing I know for sure: I fight for autistic liberation and that cannot be achieved as long as non-autistic people are the gatekeepers of autism.
This is a great article.
I am diagnosed now, but I Self-diagnosed for a while before seeking a diagnosis.
One thing that really baffles me is how an autistic person can reject one of their own people because of not having a formal diagnosis, when many of those same people have had their own diagnosis doubted by uneducated and closed-minded people. It’s rather hypocritical.
It took me many years to realize that I am autistic. I took tests, did research, communicated with other autistic individuals, and even ran the idea past a few professionals. After I accepted it, my whole life suddenly made sense to me. I have searched high and low for someone to do an official diagnosis, but nobody in my area will do it. I would love to have an official diagnosis. I know I am autistic, but I have no way to “prove it”.
I just want to say that I really appreciate this article! As someone who’s been researching and contemplating self-diagnosis, this article really helped me feel validated and more confident that I can and should be able to at least explore this avenue. The part about how non cishet, white, male children aren’t diagnosed as consistently really stood out to me. Thank you for specifically pointing out these biases, especially the recognition of how trans people have a hell of a time.
Thank you again for writing this, and for writing and sharing everything else here on your blog! :)