Autism Self Diagnosis: What is it? How & Why?

There's SO MANY "self-diagnosed" autistic folks about these days, but how do they do it, WHY do they do it?

00:00 Intro
01:30 Cliiiiiiiiiffffff!
03:46 Potential
05:16 The message
07:09 It isn't easy to bring up
08:16 Professional connection
09:38 Where to go from here
10:50 Compassion
12:01 Barely coping?
12:50 RED ALERT!
14:11 Searching for answers
15:37 Online secrets
17:03 Why does anyone WANT a diagnosis?
18:08 Ordinary again
19:19 The magic piece of paper
20:50 Waiting
21:40 Quickly
23:26 Not for everyone
24:34 How do we solve the problem?
25:32 Never again

#EngageAutism #AutismAcceptance #actuallyautistic
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[tiffanylbacon]

I was diagnosed with ADHD June 2023. I suspected autism January 2024. My husband said, “I suspected it for the past 10 years. You and our son are almost identical rival in your traits”. Our son is autistic. My son said he has known for years. I had my autism eval 2 weeks ago. I’m an autistic ADHDer. Life finally makes sense.

[HaakonOdinsson]

The reason why I’d like that diagnosis, is to feel validated. I’ve been dismissed, disbelieved, ignored. It would also enable more support doors to be opened…I also come from a abusive relationship and abusive childhood background, lots of trauma

[mudotter]

There is so much empowerment and validation when someone describes their childhood traits and they mirror your experiences exactly. While it may seem like the number of autistics is 'growing', we know we were rare enough to be all alone in many of our experiences. We were ridiculed and alienated by those who should of been our peers. Occasionally you may have met another child you could click with, and often they were considered weirdos too. And not wanting to be weirdos, we often did not treat each other kind or wanted to be associated with each other. It's really sad in hind sight. Self diagnosed or self identified, it's the need to understand one's self and have a broader context for how we are, like we are, in the sea of humanity we find ourselves in. The lack of belonging is a life long heartache.

[jenniferjamison]

For me, the more I learn, it has actually felt like an answer. I am not just a clumsy, bookworm, full of useless facts, usually only one or two close friends, misophonic, matter of fact, people have to get used to my honesty is not coming from malice, boundless creativity, strong sense of justice, and often need time alone to recharge. Yet, my friends don't see it. I am in health and human services, my mom went medical, my dad computer geek. How can I not have seen it in 54 years?

[christopherhoggins]

I've been waiting over 4 years now for a 'formal' diagnosis... All I can tell you is that after 50 years of struggling, managing asd triggers rather than trying to treat anxiety and depression has made my life a lot more bearable.

[Roseyla]

When I was about 22-23, some woman from across the country had gotten to know me online, a high school science teacher. One day, she suggested to me Asperger's Syndrome. When I looked it up, it was then considered to be a "mild form of autism, " and back then the classic autistic white boy is what we saw on television ads, of which I barely paid any attention to. Immediately, however, Asperger's Syndrome clicked, and it wasn't long after that my wish of being born on the wrong planet, a hope that there was a planet that made sense, went away. I was human, like everyone else, but my perspective on life was different for this reason. It wasn't the answer to all of my struggles, but still after 17 years I hold true to the belief that I am autistic. Like in this video, a diagnosis would be for certainty and support, because without it, people think I'm just wrong about myself. Even in therapy it can be hard to be taken seriously for this, which is sad because much of the time even people who can perform an autism diagnosis know less about it than I do - they need a rigorous process and family history to identify autism - but autistic people can identify each other out in the wild simply by brief contact, or observation even. I'm okay telling people I'm autistic, but regardless of what I tell people about myself, my strengths or weaknesses, it doesn't get me any support. I am rejected all the same unless I play by *their* rules. If you want to succeed socially, play just enough, and set your boundaries instead for dicks like them. They aren't worth our time. They must accept us for who we are much like we are trying to do. They obviously can't understand or don't care enough about us to know why we'd go to such great lengths in seeking insight into ourselves, and to be curious and willing to support us. Even my own family treated me just as poorly as a stranger. Boundaries!

[nozhki-busha]

I am 49, self identified autistic and I am seeking a formal assessment next year, mostly for closure and to shut down impostor syndrome. Also loving the 80s pop culture references like the Blake 7 Liberator and the Tales of the Unexpected intro. My journey actually kind of took both roads you talked about, Quinn. I was diagnosed with ADD in 1983 but my lived experiences are much more suggestive of autism. The more I have researched, learned, and interacted with the autistic community over the last year and a half, the more certain I am that I was misdiagnosed and I am an autistic person. I told my close friends and mom that I thought I was autistic earlier this year and they were all like "Yes, we know!" It seems I was the last to realise it 🤣

[wisecoconut]

I am 57 and female. I only identified myself as autistic after I retired. When I was a child, very, very few people were formally diagnosed with autisim. And almost 100% boys. Even in my late teens, I was told that it was "impossible" for me to be autistic. Yet, my life experience didn't change because others made the judgment that I was not autistic. I would like a formal assessment because I am a rule follower. But it is far too expensive. I only came by self identification because I was researching CPTSD in an effort to figure out why my relationships have been crappy. I discovered that CPTSD and autisim have some overlaps and autsim just made more sense. But with that knowledge I began to look at others differently, with a lot less blame, and my relationships improved. No, my mother isn't vague and obtuse in some bizarre power play. She is using typical indirect language and I now I know to ask her clarifying questions. Just figuring that out means I trust her more.

[kyleethekelt]

My therapist raised the subject with me after quite some time, primarily because she is self-identified, has two diagnosed sons and says her late mother was probably autistic too (though she was apparently known as eccentric). I had no idea, chiefly because I was as ignorant as the next person, about what autism was and wasn't. Through you and a couple of your mates I have learnt differently. Now my therapisst and I are both working on getting the paperwork. I am extremely fortunate that I have a family member who is willing to help pay for a private assessment, else it wouldn't happen at all. The one person who was doing it in the public system in my provincial NZ city was moved to a different hospital team. The assessor is in a city some hundreds of kms away and we're going to have to fly her in but she comes with excellent credentials. As with so many of you, it will explain a heap, once she untangles the attachment issues, CPTSD and other stuff.
Curiously, as a disabled person I have already had the folowing reaction from (now) ex-friends. 'Why would you want to be autistic? Isn't blindness enough for you?These are the same ignoramuses who think impairment is something you acquire and then carry around like a fashion accessory, or some cobweb-covered cooky jar from which impairments are rationed out and from which I must be snatching, instead of just part of the fabric of life. It would be interesting to know whether other disabled people have also experienced this. I don't know what Tania will find when I finally see her, but it will be an interesting part of the journey. While I still experience a good deal of self-doubt, and will until the results of the assessment (whatever they turn out to be), there is no denying the fact that I simply seem to click effortlessly with known autists in a way which is new to me. I meet people who have difficulty with people in general and who actually like me. This is new and strange.
Thank you, Quinn my friend, for giving us all the supportive space to share ourselves with one another.

[StonedWandererAZ]

Summed up my "self-identification" journey pretty well. I'm late Millennial/Early Gen-Z, so growing up, our understanding of autism was basically using it as a synonym for retarded. One day, I was stimming in a way that I thought was weird and jokingly asked myself if I was autistic. Did some research on it and came to the startling discovery that I might be on the spectrum. Over the next couple of years, I would look into it on and off, had a couple of childhood friends who ended up getting diagnosed as adults, and a lot of my younger cousins have gotten diagnosed. I've come to the point where I've accepted that I'm autistic.

Currently not seeking a diagnosis. I'm pretty confident in my intuition and don't really see any benefit in going through that headache right now. I have a good job that revolves around my special interest, and most of my coworkers are on the spectrum as well, so I'm pretty well supported despite not having a formal diagnosis and actually feel like I have a group of people I fit in with for the first time in my life.

[alejandro-]

Great video!

For me it took 12 years from my first suspicion to formal diagnosis.
- In college, a friend told me "you know you're a little bit Sheldon, right? But not like 100%". She planted the self-suspicion seed, but also the impostor's syndrome seed. I buried my curiosity because I didn't "felt" autistic enough.
- 10 years later, my only childhood friend received an AuADHD diagnosis. That same year, an autistic woman started working in my team and she requested to work with me since she felt more comfortable with me. I started researching about autism to better understand her.
- After 2 years of research, I went for formal diagnosis. I felt relief and validated when I got it. It helped me overcoming so many years of identity crisis and self-gaslighting.

[taraahammer]

Ty so much Quinn. God bless your parents !! I am 55 years old. I got auditory processing disorder in April of 2023. My abusive mother prevents me from getting an official diagnosis. She would use it in court to take over my estate. The estate that I earned myself. So, I am working on Ehlers Danos diagnosis. This would legitimize my physical neurological symptoms. So many women are given antidepressants and are devalued. I will keep poking the medical system to hopefully make it better for my grandchildren.

[kakkipeter]

Hey Quinn thanks for keeping up with your channel :)

[PatchworkDragon]

I had my "aha" moment over two years ago, and I have been absorbing as much autism content as I can since then. Somehow, watching videos on channels like this one and treating myself as provisionally autistic has helped significantly with the depression and anxiety I "officially" have. Something about understanding the reasons behind the struggle helps a lot. (Thank you for your role in that, Quinn!)

Unfortunately, I can't justify spending $2k+ for an official assessment, so I will have to be content with remaining schrodinger's autistic indefinitely.

[Redskies]

One of my children was diagnosed about 6 years ago. It made me remember a bunch of stuff from my own childhood but I didn't pay a lot of attention at the time. Then my other child began having behavioral issues at school and we were advised to think about getting an assessment for her too. We decided not to get one as it really doesn't help, and just gives a way to label the person and make them a target for funded 'supports' that don't really help the issue.

Somewhere along this process I diagnosed myself and developed strategies to deal with some of the issues myself. I've tried to guide my kids through the experience as best I can also. I have no plans to get a diagnosis myself. I don't need an assessment from people who've failed to understand me for 40 plus years to know who I am.

[JudithMoran-gk]

I’m 75 years old and I think I may be autistic but I have nothing to gain by being tested. Scarcity of testing resources should not be used for my curiosity. I have come to peace with my quirkiness and have chosen to avoid people who can’t accept me as I am. No more energy for masking. I wish everyone inner peace on their journey to improve their paths in life.❤️

[faeriesmak]

My eldest son was diagnosed as a child with ADHD but I suspected that was not his entire story…so I started researching ASD. What I found was not only that he was a textbook case of ASD, but so was his brother. Then videos popped up talking about ASD in women so I watched a few and that’s when I realized that their ASD and ADHD may have come from me. After YEARS and years of intense research and having my youngest son diagnosed with AuDHD I am concluding that I also have AuDHD. So does my Mom and a great deal of people in my family. Everything makes sense now. I am thankful, though, because knowing what I know now has given me more tools to help myself and my family. I had a lot of anger and confusion about life and people that I now I have better understanding of. I have been able to accommodate myself.

[melissamoore]

For me a diagnosis is more of a shield than validation. At first, validation was definitely what I looked for, and I'm not saying that I no longer need it. But that bit of grappling within myself is nothing new, and I have been able to share my discovery with 2 of my closest people, so validation has become a "hmm that might be nice" rather than a pressing need. But if I were to tell others in general, if I were to be open with my discovery, I fully anticipate push back. A diagnosis wouldn't stop that attack, but it would soften the impact, take some of the damage. On the other hand, without one, I'd be actively trying to block these attacks with my own body - and whether successful or not, it won't soften the blow, it'll only redirect it to an area of my choosing.
But an idea I have been strongly considering, which I would welcome feedback on, is a shield I can make with my own two hands: a book, self written. An in depth self diagnosis. Sure, I'm not a doctor and it wouldn't count in an official capacity, but I don't need it to. But wouldn't it just be a spectacular shield? And if nothing else I find great amusement in the idea, all things considered. "You can't possibly be autistic" one says, only for their expression to shift drastically upon hearing the retort, "Actually I've written a 500 page explanation of the autistic traits I've exhibited throughout my life along with a detailed analysis of why I have not yet been diagnosed in an official capacity. There's also a section towards the end with the most common reasons one may say I can't be autistic, followed by an explanation of each which renders these arguments moot."
I would so very gladly self publish, even if it means physically assembling each copy of the book myself, because handing them out and seeing the "oh shit that's pretty autistic" thought dawning on someone would just be spectacular. Inevitably a greater shield than a diagnosis, and arguably a similar amount of time and effort, but significantly less financial impact.

[LilChuunosuke]

My best friend and I realized we were autistic around the same time. (It helped him a lot to verbalize his thought process to me as he researched autism & I saw a lot of myself in what he described.) We both spent well over a year resesrching autism before we were even ready to whisper that we may be autistic in close friend circles & with romantic partners.
My best friend sought out an assessment, which was expensive and I had to help him pay for. The assessor quite literally told him that he met ALL the diagnostic criteria for autism, but would not be given a formal diagnosis due to the fact he had too many friends. The assessor quite literally told him that if he had no friends at all, he would've recieved a diagnosis. But the fact that people enjoyed his company was somehow sufficient proof that he could not possibly be autistic.
I hope one day, we will be able to not only access diagnosis without having to reach rock bottom, but that a diagnosis will actually MEAN something and that we will actually be able to access the support that we desperately need and are struggling to function without.

[keirapendragon]

For me it started with an offhanded remark by my mother in law a decade ago. That and learning I have ADHD, and of course, following ADHD folks here, and then gradually AuDHD folks started showing up, and I could really really relate. Luckily my SO is and has always been an incredibly supportive person.

Also, you do absolutely have my thanks! Your 11 video relationship series was the clincher for me, Especially #9 that "label" of "black and white thinking" was the biggest doubt I had and you explained it so well and not only does it fit. If that's a big part of being autistic, I'm absolutely glad that I am, and thank you for helping me finally sort that out! :D