Autism Self Diagnosis & Gatekeeping... Autism & Society:

Autism changes everything when it's discovered in adulthood. The realisation that one is autistic puts perspective on a life that may have been confusing and frustrating up to that point. Diagnosis can be a long road though. Thankfully there's a community full of autistic adults ready to help - except for a few...

#ActuallyAutistic #AllAutistics #AskingAutistics

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[gjsend]

Thank you very much for this video. I am 57 and have only recently discovered that I am almost certainly autistic. My life finally makes sense. The more I learn, the more I realize how profoundly my autism has affected my life. I feel as if I have been accepted by the autistic community and have only seen a little bit of the animosity that you describe. Thanks for helping to make sure that people like me are accepted into the community.

[autiejedi]

Being female & not dx till age 48 this attitude is maddening! Most adults have done so much research that the dx is usually a foregone conclusion - IF they're ever lucky enough to actually be able to access an assessment. Thank you for discussing this. 💜

[Dizzychick_MN]

The struggle for a diagnosis is very real. I live in the US. As a 40 year old professionals who would diagnose me are very hard to find. I have struggled with keeping employment my whole adult life. I live day to day, which leaves my chances of obtaining a diagnosis, and support is nearly 0. It makes the realization disheartening and makes me understand why some could succumb to the anger.

[BXLrules]

Went on a forum stayed for 3 weeks. The level of gatekeeping was staggering. The toxic effect this has on people looking for help was something I didn't want to deal with, so I left.

[loverainthunder]

Very insightful and thorough, and I will use the term self-identified, it's more precise than diagnosed anyway. Thank you!!

[rekagosztola]

Thanks again for reassuring and accepting self diagnosed autistics. There are still countries in the EU where it is really hard to get a diagnosis. You help us a lot with your videos.

[mariamurphy]

Self identified. I like that. I am not capable of diagnosing myself, but I do identify with autism. Of course there are valid reasons why I haven't sought a diagnosis for autism before now. But life is changing, again, and those reasons no longer apply to my life.

[Nerdcoresteve]

For years since I've considered myself self-diagnosed, I've tried to think why I should seek a formal diagnosis. As an American, I just can't see a reason.

Also there seems to be something fundamentally wrong with the idea that one should only consider oneself autistic only after an authority pronounces them so after a flawed examination that the examinee has little to no power to contest.

We can see just how flawed the process is by the advice given to those seeking a diagnosis. One is told to do the research first. Why? Isn't it so we can use that knowledge to influence the result?

I remember when I got my ADHD diagnosis. The first doctor I saw refused to believe I could be an ADHDer because I wasn't diagnosed as a child. How can we trust an organization that frequently (after all, Stories like this are common) gives someone that ignorant the power to grant or deny care.

[TheRev]

I did a lot of reading and research in determining that I’m autistic. The real “light bulb moment” however, came when I started engaging with the autistic community online. I talked with other autistics about my experiences and realized almost immediately that I’d found my people.

I’m in the USA and a diagnosis is pretty much priced out as an option, so being accepted as self-identified has helped me a lot. Fortunately, the groups I frequent do not allow the kind of malcontents you describe. I could just as easily been turned away and still feel uncertain and in the dark.

A great video, as always!

[kayjay-kreations]

Self identifier and awaiting diagnosis at 58 and on line meet ups are a life line right now I need more contact with other people on the spectrum. Thanks for the support you encourage

[pookabeans]

This video very much explains the thought process behind an article I saw, "You and I are not the same". I suppose one doesn't start having autistic struggles and experiences until a doctor says so lol.

[sadshyguygaming]

I definitely like the term "self identified" more. I think I saw other people use the term "self diagnosed" and started using it myself. But I think if more people start using self identified it will catch on and spread.

Lack of money is my reason for not getting a diagnoses. But also I have a hard time understanding and articulating my thoughts, actions, or just about everything about me. And although I don't know exactly what it's like to get a diagnoses in my mind it seems like it would be hard or take a lot of work or self reflection and explanation on my part and I don't know if I have the ability to do so. I kind of feel like I have been misunderstood my entire life and I don't know that I will be able to be understood by medical professionals or whomever is doing the diagnoses.

I think I fall under the category of those who turn inward or withdraw from everyone else. I feel like I don't understand life and I feel misunderstood all the time so I stopped trying and kind of withdrawn into self.

[jeffery]

As much as I think "self identified" is less assuming, being self identified as anything other than the norm is already used against people, like with being trans or non-binary. The term may even spark more vitriol than with "self diagnosed". I personally feel that with the context of saying "self", it implies that its not been done professionally, so can't really be confused as such. The definition of the word "diagnosis" does still work pretty well in this context. I'm personally professionally diagnosed, so I'm mainly concerned about how others may be treated, and how the more hateful kinds of media may treat all of us as an entity. It also feels a bit off to label it as an identity, since its not really a personality trait, but the physical shape of our brains, and the physical way it responds differently to stimuli.

[takemeto_yourplanet]

Great video. I do appreciate the statement of “perhaps” as a suggestion to not use “self-diagnosis” since it’s being used against us rather than how some people say “stop doing this!”

I’ll say that, to me, just because the term “diagnosis” or “self-diagnosis” is being used against us doesn’t really mean that those terms shouldn’t be used since they’re still accurate and valid. “Diagnosis” simply means identifying the nature of an illness or problem by examining the symptoms. That’s specifically why the term “self-diagnosis” is being used to specify that the examination and identification was done by one’s self as opposed to a standard diagnosis or “medical diagnosis”.

When I recently had an ear infection, I had 4 doctors and 3 nurses misdiagnose it, but I accurately diagnosed it myself as a fungal infection. With that said, they all didn’t listen to me because they didn’t see the validity in what I was saying (and I also wasn’t 100 sure and was trying to tell them to consider a fungal infection rather than telling them for certain that’s what it was but I was saying that, based on the symptoms and my knowledge of the situation and how things were worsening with their treatment, fungal infection seemed most likely and should’ve been treated).

By the time I got to see an ENT, after about a month of terrible pain and worsening symptoms and mistreatment, the ENT simply confirmed my “diagnosis” and said that I did great on that, especially for it having been my first ever ear infection and it was unfortunate that it took so long and that I had to be so insistent and have multiple medical professionals tell me otherwise and disregard my suggestions and insist that I continue their treatment that was making the infection worse simply because they didn’t think my input had value compared to their medical training. At the end of the day, I was the one to suffer for it and they moved on with their lives without a care and this was a simple ear infection.

Now just imagine for things like the inner workings of someone’s mind and the motivations behind their behavior rather that an infection they could clearly see growing worse with each visit 🫤

[wyattbalko]

My life is exactly as described in this video. I only more recently had a friend tell me they thought I was on the spectrum. Due to the stigma I was offended. More recently I was curious and quite possibly down a rabbit hole and bumped into a YouTube video about being autistic. I realized I related to video and now self identify as autistic. I am thankful for this as it helps me understand many aspects of my life.

[andreahalverson]

I am always impressed by your keen ability to explain the subject matter you are covering. Thank you.

[richardmcmellon]

Great video!
I self identified as autistic for a couple of years...I was uncomfortable with this!
Full diagnosis gave me closure, and then I learned who I am.

[tomishabee]

First of all, I have a wall of text, so I'm sorry for the long read, but I feel like I have to say this all.

I would like to say that I love your set up. It doesn't hurt my ears or my eyes, and I greatly appreciate that.

Secondly, I wanna thank you for making this video. I was diagnosed with ADHD as a kid (one of the rare females diagnosed as a child) and it's only recently that I learned that if you have one, there is a STRONG likelihood that you have the other. Or were misdiagnosed from the start. As I was researching my own disorder, I started noticing a lot of videos about autism popping up on my feed, and I figured, what the heck let's do some research. And what I found opened my brain up like no other. I watched a video that breaks down the diagnosis process and gives off a checklist, I've talked to people about it, I've taken an online test that was developed to help individuals determine the likelihood of being Autistic, and after finally determining that there is a HUGE chance that I am on the Autism spectrum myself, I looked into what it would take to get a diagnosis as an adult. It's disheartening.

I live in the US. The only psychologists in my area that even so assessments for autism diagnosis only see children. (I haven't been considered a child for 15 years.) I'd have to travel hours to see a psychologist who would even be able to see me, and that's after a waiting period of up to three years. The cost of even seeing this psychologist, even if they were "In network" with my insurance through work (they aren't by the way) would be $500+ per hour. That's about 1/3 of my monthly salary, and I have bills to pay.

When I started doing more research, and mentioned to those closest to me that there is a possibility that I may be on the spectrum, they all basically said the same thing, "Well, duh."

I've always felt off saying, "Self Diagnosed." I've never really cared how people were diagnosed, because it's simply none of my business. If someone shows the traits and relates to the struggles, and feels that they have found the thing that finally makes their experiences make sense, it shouldn't matter. Yes, it can be life changing to have that validation in their hands, but as a person with ADHD, who am I to say that someone else going through very similar things as me but that hasn't been diagnosed, doesn't have ADHD? I appreciate you bringing in "self identifying" as an alternate terminology. I may never have the capability to be officially diagnosed, but I most definitely identify and relate to a lot of experiences and traits that a lot of diagnosed autistics feel, and I was a little afraid to openly state that I feel I am on the spectrum without an official diagnosis because I was afraid of being blocked and ridiculed for my admission.

I guess this is a really long-winded way for me to say thank you for making this. I highly appreciate you and your content and I look forward to watching more if your videos in the future.

[Tilly]

I've been on a self discovery search for many years after a life of not fitting and feeling I was in a fog of confusion.
At 65 I finally stumbled on the information that sent me down the focused rabbit hole of autism and what it means.
I took the tests I found online and wanted them to show I was "normal"...they showed I am totally autistic. That was my light bulb.
My sister who has a master's degree in psychology agrees that I am, but it isn't an official "diagnosis".
If I were to even be able to find a competent way to get an accurate medical diagnosis in our already overburdened broken medical system what would be the gain for me at age 65? It would be a waste of time and resources is what.
I'm autistic. I accept this now that I know, and have found the inner freedom of knowing.
I've been processing my life and it all makes sense. Thank you for your speaking out about this. Even though a doctor hasn't given me a "certificate in autism" I know I certainly am. It's hard enough to gain acceptance without other autists booting me in the rear too!
Appreciate your channel a lot. Glad I found you.

[eponymoususer]

Thank you, thank you. Validation is so rare.
Autism is not a blight. It’s just a different perspective.
Thank you again.