There are so many opinions on whether you need to get an official autism diagnosis or not. In this article, I’ll do my best to answer all your questions. We’ll talk about self-diagnosis, if you should consider diagnosis, and more.
This article is for adults and those in their teens who think they are autistic. If you’re a parent and you think your child might be autistic and are wondering if you should have them assessed, read this article.
Does a diagnosis matter?
The short answer is yes, whether self-diagnosis or a formal diagnosis, a diagnosis matters. I feel a diagnosis is a very good thing in a lot of ways, which I’ll discuss below.
Some do decide not to pursue an official diagnosis but instead choose to self diagnose, and I’ll also cover the reasons for this as well as the pros and cons.
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Some benefits of a formal autism diagnosis
An official diagnosis can just make everything easier. Here are some ways it can help:
1. When explaining it to family and friends
Even though they shouldn’t, people do ask if you were diagnosed by a professional. Some people will just ignore your self-diagnosis.
I wanted to be able to tell people that I was officially diagnosed with autism.
2. You can get accommodations
Having an official diagnosis also helps in the work environment. If you have a super good boss, they might accommodate you with self-diagnosis.
You are much more likely to get accommodations if your diagnosis is official. In fact, in many countries, they are legally obligated to accommodate you.
You can also get accommodations in class. You may be allowed to wear sunglasses and earplugs in class, for example. Or you could be allowed to take your exams in a separate room where you can focus easier.
3. You have validation
You also get validation from having a professional tell you that, yes, you are autistic. You’re not broken, you’re not lazy. You have different neurology and this affects your life every day. It feels good to be validated.
4. You know for sure
Another benefit of a formal diagnosis is that you know for sure that you’re autistic. I was pretty confident with my self-diagnosis, but I still had nagging doubts until I got my diagnosis. It’s like I couldn’t fully relax.
What about self-diagnosing autism?
Where I live in Canada, health care is free. So to me, why wouldn’t you get a diagnosis?
But, in other places, it can be very expensive to get assessed for autism. So, a lot of people are self-diagnosing. Is this a good thing? This is a very complicated topic (with very firey opinions on both sides).
I’m not here to argue. I’m just going to give you my opinions and some of the research I’ve done.
First off, let me just say that if you’ve done a bunch of research from reputable sources and you feel firm that you are on the autism spectrum, I believe that is valid. I don’t think anyone should put you down for self-diagnosing.
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That being said, it is important for you to do a lot of research! You might watch a couple of YouTube videos and feel like it describes you perfectly. That’s fine, it’s a great starting point.
But you do need to be careful not to make a big decision too quickly. There is a need for a slow, careful evaluation. After you’ve done that, if you still feel that you’re autistic, then good. You probably are.
I was self-diagnosed for about two months before my official diagnosis. I was comfortable enough that whatever my psychologist said was not going to throw me.
I had done a lot of research and I knew that autism is often misdiagnosed as bipolar, multiple personality disorder, and a lot of other things that I knew did not describe me. So I was ready.
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Why some think self-diagnosing is bad
The internet is a fairly mean place. I’m not going to fuel that fire. Not everyone has access to a diagnosis and diagnosis is a privilege.
I’m just going to tell you some of the things I’ve seen around the web and offer my opinions on why they may not be valid.
5. You’re just doing it for attention!
Some think that people self diagnose because some of their friends are autistic and it’s kind of trendy (I guess?).
Now, the problem with this is that because there have undoubtedly been some who have done this, it invalidates the others who are serious.
If someone has self-diagnosed for attention, it would probably be easy to spot; they probably won’t actually know much about autism.
Now, that being said, don’t draw conclusions about people! If someone says they are autistic, I think it’s best to give them the benefit of the doubt.
If someone has self-diagnosed because it’s popular and they actually don’t feel they are autistic, it will blow over. They will stop eventually when they feel it’s not trendy anymore.
I don’t feel it’s something to get worked up about.
6. That trivializes the diagnosis!
Some believe that self-diagnosing is bad because it trivializes official diagnosis.
Autistic people may have to go through a lot to get an official diagnosis and it could be annoying to them (i guess?) if people were popping up everywhere self-diagnosing in a week what took the autistics months or even years to obtain. I’m embellishing to make my point, but you get the idea.
However, self-diagnosis doesn’t bring you the same benefits as an official diagnosis as we talked about earlier. Some bosses or teachers may view the self-diagnosis is valid, but it’s a long shot.
So people who self diagnose aren’t “stealing your accommodations,” or something. I don’t really see with this argument how it harms officially diagnosed autistic people. Especially because there isn’t a limited number of accommodations…
7. You’re not a doctor!
Now this one could have a bit more validity in my mind; saying that you’re not a professional and you can’t understand the criteria for diagnosing autism.
Buuuut… the argument can also be made that many doctors today don’t actually understand the current diagnostic criteria for autism, especially not in adults or girls. And they can be racist or sexist.
And autistic people tend to be pretty informed about themselves and what autism is (let me stress research again: research!!)
Another point is, you can download the DSM 5 online for free. So you can know the official diagnostic criteria for autism.
So, if you’ve studied up on it (really, a lot of studying) then I don’t see a huge problem.
The issue comes in, like I’ve said, when someone watches two or three videos and yells “I’M AUTISTIC!!,” from a rooftop. That could create issues when they see later on that maybe it doesn’t apply to them and they ‘take back’ their self-diagnosis.
Now, it could look like autism is a disease that comes and goes. Or it could just reflect badly on the person.
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Why some don’t get a formal autism diagnosis
There are a number of reasons why people may decide not to get a diagnosis.
8. It’s too expensive.
In a lot of areas, it is very expensive to get an official autism diagnosis and you might not be able to afford it right away.
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9. My doctor is a meathead.
Okay, maybe that’s a bit harsh. But there are doctors who just refuse to refer you to a specialist. And some just have really old knowledge about autism and may think very stereotypically.
Some doctors won’t diagnose women or people of races other than white. Or anyone other than 5-year-old white boys.
10. My parents won’t let me get a diagnosis.
Some people don’t want to get their kids diagnosed. Despite their own children coming and saying, “Look at all the research I’ve done! I’m autistic, I want a diagnosis.,” the parents refuse.
I won’t rant about this. People come from all kinds of families, I’m happy that my parents have helped me and been supportive.
But if you are living in a family that doesn’t support you, or that is straight-up abusive, I’m sorry. I hope that you can get what you need eventually. But your research and your self-diagnosis are valid.
11. My culture doesn’t view it well
Some may be worried about being viewed badly or as unintelligent because of their diagnosis. This varies greatly from place to place and family to family.
Some countries won’t even offer you certain kinds of health care if your quality of life is viewed as too low because you’re autistic. It may impact career opportunities as well.
Again, self-diagnosis is valid in my opinion as long as there is adequate research done. You need to do what’s best for you.
12. Does it really matter?
Some autistic people or parents may think that a diagnosis isn’t really important, so they may not seek one.
13. I’m just not ready.
It can seem daunting to go to a professional and expose your insecurities and people might not feel ready for this.
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What should you do?
This is a really big question, and a very personal decision. In my opinion, if at all possible, it’s best to pursue an official diagnosis.
But don’t despair if you’re not able to! The autistic community understands how difficult this is and is very welcoming to those who are self-diagnosed. So you’ll still have an online tribe of supporters, even if you can’t have an official diagnosis.
You know yourself. If you’ve put in the time to research and you are convinced that you’re autistic, I won’t question you. No one should.
Whether you’re officially diagnosed or self-diagnosed, research, research, research! Keep learning about it, this can help you so much. Knowledge is one of the best ways to help yourself.
A bit of advice
I’m going to do a whole article on how to tell family and friends about being autistic, but I just feel like this needs to be said.
If you’re a minor that’s still living at home, make sure to address this subject respectfully with your parents. They will respect you if you show them that you are open to suggestions and that you care about them.
That being said, don’t be a pushover either. Just approach with calm confidence and that will get you the best outcome.
Make sure you have some reputable studies and references from credible doctors or online sources. Your parents might find this a little hard to swallow if you tell them you watched a youtube video and now you are convinced you’re autistic.
Just make sure to have a balance and to treat them with respect.
That’s all I’ve got. What do you think about official vs self-diagnosis? Let me know in the comments.
And, if you feel comfortable, share your diagnosis story and if you wish you’d been diagnosed sooner or if you’re happy with how things went.
Love from the autsiverse!