all this self-diagnosis stuff

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I was just thinking about it and thinking, probably in real life people don't use that term, self diagnosis. I'm guessing that nobody walks around saying, Hey there, I've diagnosed myself with Autism. Probably they just use the term here, for the sole purpose of differentiating between a formal and diagnoses and their suspicions (in which case, it makes sense to me). People on this site would tend to know what that means.

I am curious about one thing though, for all this clamoring about how the undiagnosed are "using" Autism, or whatever the claims are ... I've told a total of about 5 people that I think I am Autistic. Family members, co workers and one boss (which was dumb, I just blurted it out when we were talking about Autism).

It has never benefited me in any way to tell anyone. I've gotten a few hostile responses, mostly ambivalent because people don't know what Autism is really.

So my question is, whether you are formally diagnosed you are think you are Autistic, has anybody ever benefited in any way by telling anyone? (Other than the things legally required like job accommodations, etc).

In the years that I have been diagnosed I've told a total of two people. I only told them because I knew (instinctively) that they wouldn't give a s**t either way. I was right.

I might have benefited from that in some way but I don't know.

Apart from that, no.

Well, i believe self diagnosis is pretty useless, and silly, because what is the point?

you can not seek any actual professional help without a professional diagnosis, also just because you "seem to" have some traits, or even a lot of traits of autism it doesn't mean you actually have it, so you can be wandering around telling people you have autism, when you actually have adhd, and bpd, and bipolar depression, all treatable illnesses you are not getting treated for because you think you have autism

basically i think it's a waste of time to think you have something, rather then know you have it, would you be okay thinking you had a million dollars in the bank? or would you go check the bank and make sure?

what makes me feel weird about self diagnosis is because you read about "autism" doesn't mean you understand mental illness at all, there is many many problems that look like autism, and each person has different levels of ability vrs disability

I made a post in an older thread the other day saying all this but it's old, so no one is likely reading it anyways. What i am trying to say is it's not logical to me, to not have a diagnosis, if you do not have money apply for welfare, if you are perfectly able to keep a job, then you probably do not have autism so bad it makes any difference anyways. if you see 4 doctors and they all do not diagnose you with autism, then you don't have it, and should start looking for what you might have and be happy whatever you probably have is likely fixable.

Like i said in the other post, Autism is not cool, and it's not a gift (for all of us, we all can't be like Alex) i would still give my legs, or intelligence, or just about anything else to be rid of it, to just talk to someone, without pissing them off, or making them creeped out.

So yea, almost everyone is self diagnosed though, there is that first step when you go "something is not right" so you seek answers, and decide "this might be what i have" but that's where it gets annoying for me, why would you just stop there, a lot of people seem to want Autism and are afraid they might not have it, and thus don't get diagnosed, because someone might tell them they don't have autism, others just don't have money to get a diagnosis , and just don't know how to get help with it, in my opinion though if you have been walking around telling people you have autism for 5 years, and have not been diagnosed, then it is because you do not want to be. i have no money, and no job, and i manage, so go get yourself on welfare, and get diagnosed, and start helping yourself, and if you don't have autism, be happy, and seek help for whatever you have.

You just made a bunch of assumptions about me (or maybe they were just generalized assumptions).

THe one that is most way off base is:

Anyway, there are about 15 threads going right now with this debate raging, I'm not trying to start another one. I'm really just curious to know if anybody has benefited from telling anyone they are Autistic or they think they are.

yeah it can be rough, some people just don't understand

I have not derived any benefit from disclosing my ASD. It's not something that's "cool" among people I see every day. In fact, it might make them paranoid pertaining to you if you disclose. Not cool.

I've had all sorts of benefits from telling people about my autism. The only negative experiences I've had are with people and situations that would have made sure to be targeting me anyways, they just chose that as a manner to. (And the fact they did, did hurt).

Some of them that immediately come to mind:
-I've had people learn all sorts of things about autism because of me. They also specifically turn to me if they have questions.
-I've had people watch out for my sensory issues.
-I've had people in social situations, ask me if it'd be easier for me if I swapped seats with them because the people talking were behind my seat and they saw my stimming increasing.
-I've had people get others stop talking and listen to what I was trying to say because I was getting to rocking in a corner because I'd put so much effort into trying to talk and then people started talking over me.
-I've had conductors on the commuter rail help me out with getting to where I need to go (though I just disclosed disability to them, not autism in particular).

I have actually had good experiences with disclosure during employment. I work part time (and yes I am autistic and yes I do work. Being autistic doesn't mean I cannot work. I found a way to, I am doing it, and the fact I am limited in where I can, have limitations others don't, and need accommodations others don't, doesn't mean I'm not working).

I actually disclosed in my interview, but the person I was interviewing already knew I was disabled and probably could guess from my behavior that I was autistic. It was viewed as a positive thing that I'm autistic.
My coworkers in both places I work know and in one place always turn to me first for advice. In the other, they listen from my point of view (and that one is much more recent a place that I'm at)
My students all know, and there's huge numbers of advantages of my students knowing. I've helped them out so much from them knowing.

That's really nice! I'm glad you are getting help and are able to work. I wish it was more common.

Exactly.

I have only told people on a personal basis that I think I'm autistic, for the sake of letting them know me better. Mostly just people I know online, and family members. I don't go around declaring myself autistic to people in general and certainly not to ask for any kind of accommodations.

I haven't had any problems in bringing it up with my family. I've seen a lot of people here say the opposite though, that their family is not understanding. That must be awful.

Otherwise though I haven't found much benefit in telling people. Instead I found that people changed their attitude towards me and began to talk down to me more.

I told one person about my posts here, and they read all my posts and really seemed like they understood. That made me really happy. But later this same person turned against me and attacked me and tried to publicly humiliate me in some other groups. It was the most shocking betrayal I've ever experienced in my entire life and has really messed me up very severely. It's been awhile but I still feel anxiety every time I post here wondering if that person is still reading my posts.

I haven't really experienced anything good as a result of telling people, if anything it's made my life much worse. It's a weird spot to be in when you can't talk to anyone about it, which is why it's so important to have a place like this to talk about things.

Immediately after I was diagnosed, I decided to share my diagnosis (which, at the time was Aspergers) with several people -- including my wife, parents, siblings, an uncle, a cousin, a lifelong friend and 2 former work colleagues. I was keenly interested in discussing this (my diagnosis) with others as I wanted to gauge their reaction (because, at the time, I had some doubts). Anyways, I quickly learned that they were simply not interested in discussing the topic. So, I dropped it.

I told my best friend that someone asked me if I had aspergers, and she said she had suspected for years that I might be on the spectrum. She's an OT, and used to do behavioral therapy with kids on the spectrum. She has been incredibly helpful in helping me figure it out and went with me to my assessment and gave a lot of info on what I'm like. I've told several other people about my suspicions (before I got an autism Dx) and have gotten mostly positive responses.

Being able to tell people HOW I think and why I think that way (because I'm autistic) has been helpful in my relationships with my family and room mates.

Well, I am hoping to see some benefit. I am currently working with local news media about disclosing publicly in the next few weeks as it relates to the 25th anniversary of an LGBT political group that I founded. I am planning to specify that I have been screened with Asperger's Syndrome (AS), not diagnosed. Beyond that, I plan simply to refer to myself as an Aspie, like I do here.

But, the benefit that I am seeking isn't for myself. Because adults in the United States who suspect that they might have an ASD often experience difficulties in able diagnoses, their workplaces and their communities, I hope to use my disclosure as a way to encourage awareness about and among them.

To answer your question personally, yes, I have benefited from disclosing my screening-test and factor-test results, my detailed lifelong characteristics and my factor diagnoses to my family and friends. To most, it resulted in a lightbulb-over-their-heads moment. For others, they asked a lot of questions because they knew very little about AS. Either way, it was good.

I hope that the same thing happens to others when I disclose publicly next month.

I've certainly benefitted.

It led to many positive conversations with my closest friend, and this his father, which ultimately led to figuring out the digestive root cause that was exacerbating symptoms and how to successfully treat it.

It probably wouldn't benefit me to disclose it to certain people, that's for sure. But disclosing it to some and discussing it certainly has been good for me in ways you can't even imagine.

I benefited in college. The formal diagnosis, which was definitely required, allowed me some extra guidance and the opportunity of taking my tests in a smaller classroom with other people who had learning disabilities. I did not share this information beyond the dean and another teacher, but it made enough difference.

I find that sharing it with my professors, even in classes I don't need specific accomodations for, is helpful just so they understand me better (I'm a psych major, so the majority of my professors are familiar with AS/autism). It was also helpful at work when I needed to explain why I couldn't be moved from my current position to be a cashier due to the noise, constant human interaction, and general overstimulation. It wasn't an official or legally required accomodation, but it did make the difference between me keeping and losing my job (I definitely would have been sacked as a cashier).

Why is it that nobody notices a generation-difference in this matter ?

Back in the sixties you were educated into conform if you had the adaptation possibilities, lefthand writing was mostly not allowed, compulsive behaviour was not allowed (but maybe it was more accepted that odd people exist, nobody was diagnosed at that time) You had children staying in the same class years on a row and when they did level up that was only because they physically should .

I was allowed to skip classes on entering primary school, but the sport-teacher didn't like that so he wouldn't help out one sec, and made me cry at sport lessons everytime and from that came bullying, which not got too bad maybe because I knocked on the leader quite soon, but the whispering and name calling continued for a long time. The people you talked with and helped in class, who are seemingly so embarressed for that, that at playtime they need to point at you before their friends!
And after a lifetime keeping up, you find it's actually still the same thing going on, but that's another story!