AUTISM SELF-DIAGNOSIS…YAY OR NAY?

Self-diagnosis means diagnosing yourself with a condition. A professional, official 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. It means doing research. It means 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 What is misinformation, outdated information, and incomplete information?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, just like professionals, if you base your diagnosis on false information, you may get a misdiagnosis.

Self-diagnosing also means being open to a negative result. Self-diagnosis, just like a professional diagnosis, isn’t looking for confirmation. It’s looking for the truth, even if the truth isn’t what one thought, expected, or wanted. As such, self-diagnosis does include also looking at other conditions that might fit the traits one experiences as possible diagnoses. It is vital to avoid confirmation bias during a self-diagnostic process just as it is during a professional diagnostic process.

Self-diagnosis is not a one-off uninformed decision made in 5 minutes. Self-diagnosis is not quick and easy. It is not done without thoroughly educating oneself first so one can be as sure, or more sure than a professional would be.

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…just like a professional diagnosis.

Self-diagnosis is not done to get attention, because someone wants to be oppressed, to gain any kind of advantage, or any of the other harmful reasons people who oppose self-diagnosis often bring up.

A non-autistic person falsely declaring themselves autistic is not self-diagnosing. They are lying about being autistic.

Self-diagnosis 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 autism.
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 our label?”

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 condition, and profiting off us without supporting us properly. Taking back some diagnostic power is one form of autistic liberation.

The digital age, with information and resources readily available not only to formally educated professionals but to anyone who can find and process them, empowers more autistic people to self-diagnose.

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. A professional autism diagnosis requires the finances to cover the cost. If someone doesn’t have that financial access, they may be unable to get a professional diagnosis.

Have you been through a professional diagnostic process? Depending on a person’s circumstances it can be a completely impossible undertaking. It’s hours of appointments, travel, waiting, tests, social interaction, asking and answering questions, being questioned about your every struggle, suffering, weakness, lack, deficit, usually all 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 would not be able to make it through the process.

Another huge accessibility issue is even finding a capable professional to diagnose an autistic adult in one’s area.

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 will likely 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 diagnostic 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.

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, often you 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.

Some self-diagnosed autistic people don’t want a professional diagnosis because such a thing on your record often leads to discrimination. Foregoing a professional autism diagnosis for self-protection reasons is completely valid.

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/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 another (usually non-autistic) person 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 do 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.

Some people who aren’t autistic may claim 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. People abusing self-diagnosis doesn’t mean self-diagnosis is bad. It means abusing self-diagnosis is bad.

I have witnessed self-diagnosed autistics harm autistic people.
I have witnessed professionally diagnosed autistics harm autistic people.
I have witnessed non-autistics 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.

This isn’t a problem created by self-diagnosis. It’s a problem created by people doing bad things.

Some people oppose self-diagnosis because they believe only professionals are qualified to diagnose autism. To this I say that we need to urgently free ourselves from the notion that professionals, especially non-autistic professionals, are infallible. Or even universally knowledgeable on autism.

The tools professionals use to diagnose autism are based on decades of misinformation, incomplete information, biased information, outdated information.

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.

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 even need any kind of diagnosis to get their needs met. 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.

Some people oppose self-diagnosis because they don’t want anyone who isn’t autistic 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!

One professional will not diagnose anyone as autistic who can make eye contact. Another professional will recognize that that’s just a stereotype. Some people say anyone who doesn’t have meltdowns isn’t autistic. Others recognize that meltdowns are an overload response, so an autistic without meltdowns is just a non-overloaded autistic. And so it goes with every single autism diagnostic criteria.

What are the criteria you deem 100% certain for 100% of autistic people that you can ever be 100% sure someone who says is autistic really isn’t? 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. Consider doing so not based on whether or not they are autistic – but instead based on what they say and do.

In an ideal world, there is a free accessible professional official diagnosis for every autistic person. There is a total re-work of the diagnostic criteria and process with the majority of input from actual autistic people. There are autistic professionals to diagnose their autistic peers, and training non-autistic professionals to do the same. There is no discrimination against autistic people. There are accommodation and support for everyone, and all our needs are met.

That’s an ideal world. It’s not the current reality.

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 that. But when it is more than that, when it is an actual self-diagnostic process, then I believe that yes, we must (at least currently) accept self-diagnosis – for all the reasons outlined in this post.

I’ll let you in on a secret: I didn’t always think like this. I used to be very opposed to self-diagnosis. I just didn’t dare speak up about it because I saw the backlash others received for doing so. So for years I just stayed quiet, thought my little thoughts, read what others were saying, thought more little thoughts…and slowly but surely understood that I was wrong. Please understand that most of us were brought to the opposing place not by our own free choice, but by the circumstances of being brought up in a hostile non-autistic world. We may need support to find our way out of that place.

I am happy to say today that I have learned. I educated myself, and others have helped to educate me. I really hope that everyone who is still as vehemently opposed to self-diagnosis as I once was, will eventually come to learn, too. Because ultimately, what matters is the best for all autistic people, is it not? And I thoroughly believe that accepting self-diagnosis is at least currently an important part of that.

• Cae 08.09.2020 at 6:35 PM Reply

  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! :)