We Don't WANT The Diagnosis....

Another slightly ranty one but I hope others can relate and understand!
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[@shadowfox933]

This description was spot-on. Something I came to realize over the course of learning about autism is that we don't want the label in order to be unique or different. We "want" the label precisely because we're *tired* of being different, and we want to find answers and other people who are like us

[@paradisefound3536]

"Right, so you want a diagnoses of a broken arm do you?" The fact that, that sentence will never be uttered shows that the stigma is real.

[@Catlily5]

Yes. If your arm is broken you want the diagnosis so you can get a cast to fix your arm. If you have other problems you also want a diagnosis so you can better deal with your problems. It is a pretty simple idea.

[@DanaAndersen]

If your arm just hurts though you don’t WANT it to be diagnosed as broken, you’d rather a sprain, it’s just that if it is broken, you want it fixed! We’re definitely all on the same page and reading slightly different sentences here 😅😂

[@Catlily5]

Good points of why to get a diagnosis.

[@micheller3251]

An other factor as to why we don't "just want a diagnosis" is that being labelled as autistic doesn't say anything about what we need as individuals. Our traits all manifest in different ways and the assessment can help with figuring out some of these particularities. Not all of them, since the clinical setting is obviously different from daily life, but it can give a broad idea of what our profile is. We can also figure it out on our own by listening to dozens + of other autistic experiences and compare and contrast them to our own, but it takes a lot of time and stuff like self-doubt and preconceived ideas will get in the way... speaking from experience.

[@vickimaroney800]

It's definitely for self-understanding and for learning to do life better. Even if you don't fit the diagnosis entirely, there are the atypical expressions of it. The coping strategies will still work regardless 👍❤

[@n1fffan]

plain and simple, it's not that those of us seeking a diagnosis WANT to add a label on, or anything like that. We know that diagnosis won't do anything to help us when it comes to how the world handles us. It gives us an understanding that "oh, that's why this causes me to react the way I do." or "this is why I feel the need to do this" or stuff like that. I am 35 and undiagnosed. I have had problems my entire life that I struggled with. In my late teens, I started learning about ADD, thinking that "maybe this is the reason I have a hard time staying focused on tasks when I need to". I was never able to get past the research phase due to being told by adults (not professionals) "you can't be ADD, because you don't seem to have an issue focusing on your video games" (mind you, when playing video games, i often never JUST played video games, but also did other things while I played video games). I also struggled in social situations, which led to the idea that maybe I had social anxiety issues, to which, the same adults (who when I was with often acted unknowingly like a buffer for me in social situations) said "you can't have Social Anxiety Disorder, you have no problem talking to people when I'm around/when talking about video games". As a kid, I was diagnosed with something called Emotional Dysregulation Disorder, to which, I found out that diagnosis because I asked my mom if my therapist back then ever suggested the possibility of ADD. She responded "no, but you were diagnosed with something called EDD", which required me to do some googling to figure out. Upon finding the disorder, it sounded exactly like what I deal with, and that also helped lead me down the path of learning about autism, because all 3 issues mentioned are common with autism as well. It actually took me about a decade of researching the subject before I was comfortable enough to even accept a self diagnosis, and while that self diagnosis can be helpful as a jumping off point for us (and it has), a formal diagnosis is something some of us eventually feel we NEED, not just for the assurance for ourselves, but to be able to more confidently push back when people try to claim that we can't be/aren't autistic or

[@ryn2844]

Honestly in the last couple of years I've lost my ability to trust doctors/mental health practitioners as well. Been screwed over by incompetent a$shats too many times. Some of them are great, it's just that you don't know which ones are the a$shats until you find out the hard way.

[@eonyma]

What we want is explanation, clarity, and suitable help, which is hardly possible without knowing for sure what are you dealing with!

[@skillit32]

Thank you for making these videos. Having discussions like this are so valuable for all of us.

[@renn-taylor]

I see it just like my physical conditions. I have a chronic digestive system illness, which I've had several surgeries for. Before I was finally diagnosed, I didn't receive the proper treatment. I kept being dismissed and told it was just stress or I just needed to eat better. Finally after about 13 years of digestive issues, I came into hospital with an acute intestinal blockage. The initial surgery was complicated because several parts of my digestive system were messed up. Had they listened to me years before, maybe things wouldn't have gotten so bad. But thankfully they were able to save my life. Since then I've been able to get some treatments which have helped, and I have also found some helpful nutrition and lifestyle strategies from other people with similar issues. I wouldn't have been able to access these treatments and tips if no diagnosis had been made. I also wouldn't have had access to certain benefits and accommodations that I am entitled to due to having a chronic illness which limits my ability to work and perform other tasks. And without the proper diagnosis, my illness would have killed me. It's the same with autism, ADHD, and other neurobiological issues. A diagnosis is a tool which gives us access to treatments, therapies, and helpful accommodations. It can even help save our lives. Some people attempt and succeed at suicide or self-medicate through drugs and overdose, because they weren't aware of their neurodivergence, and didn't see another way out of the fog of their emotions. A diagnosis can help improve the quality of our lives and save our lives. It's hard to find an effective way to cope with something you don't know you have.

[@gmlpc7132]

It was good that you raised the subject of GPs. There are some excellent ones but too many who are particularly poor in how they deal with mental health and psychological issues. I had a very bad experience with a GP I saw a few years ago and he was utterly unsupportive and although the consultation was only a few minutes long his negative attitude left me crestfallen and it's stayed with me ever since. As a result it's highly unlikely I will ever see a GP again about a mental health / psychological problem because even if I saw someone else I would fear the same thing happening and I won't take the risk. A big problem is that GPs are far more comfortable dealing with physical health conditions (where they can still make mistakes, sometimes with terrible consequences) and they have little understanding and - even worse - little sympathy for non-physical conditions. It would be far better if patients could go directly to specialist psychological / mental health centres where they would get far better care. As regards why we might want diagnosing, I agree the purpose is rarely (and certainly shouldn't be) just to collect labels. It's to get official recognition of the issues we face. Of course people can self-diagnose and that has its place but by definition it has no official basis. Others will question whether we really have those conditions and without official diagnosis access to support is very difficult. Diagnosis isn't often about treatment or "cures" but about helping us and others understand ourselves better and point to how we can be properly supported.

[@DanaAndersen]

I’m sorry you had such a negative experience with a GP, I’ve been there and they’re the types of experiences that really stick with you in a very negative way. I’m with you that patients should be able to go directly to the people that may actually be able to care for them, and promising people that and then putting them on a multiple year long wait list isn’t good enough either 😩 There really needs to be changed made, no one should feel at all hesitant to reach out for help, and the help should be there when they do.

[@deesparklebazinga9374]

There is fight, flight, freeze and fawn. The latter of which I totally relate to. I think in social situations I often fawn as i can't think straight and don't even know what I'm saying (I'm also a people pleaser). I relate to the breakdown after being out and I often ruminate for ages afterwards trying to work out if I came across badly etc. I found out that RSD rejection sensitivity dysphoria is common, especially with ADHD.. I didn't tell many people about my plans for seeking a diagnosis but my mum was initially against it and still to this day believes my problems started with smoking the wacky baccy! Take care x

[@nimrodgrrrl]

This is unrelated, but I love your TARDIS blue scrunchie! 💙

[@DanaAndersen]

Thank you!!! With how heavy some of the discussions in the comments can get it’s lovely to see one like this 😂💙