People say the most infuriating things- I'm just annoyed

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I really do appreciate your perspective as well as League Girl's and I have actually considered both perspectives. I have not dismissed them at all. I think they are very valid and in some cases they might absolutely apply. It's just not the case in this particular situation.

The OP is definitely not going overboard with Autism research. I know that I am biased because I am the OP but I know for a fact that that is not the case. I am not disagreeing with the fact that it could have been a possibility, I have been obsessed in the past by other things. It's just not the case here in this particular event. I have a home, a husband, another property that I have to take care of, sports that I do, I have bills to pay, I have errands to run, even if I wanted to spend all day every day researching Autism, which I don't, I simply would not have the time.

But I think that it's a bit unfair for that particular person to ask me to stop researching Autism. The person does not live with me. In fact they live in a different state so they only know as much about my life as I tell them. They love me very much and are a very close relative because they are my immediate family. I think that the fact that I am much more open about what I feel and what I am willing to do and not do and the fact that when I do learn something significant like we learned the other night, I do share it with them. So this might be the reason why they think that I spend all my time researching Autism. And I am not too much of a chatter so I don't tend to chat with them about everything under the sun like other people do with them.

Like before, I would have never known to say, I am not going to speak today because it is just taking too much energy for me to do so and I have to conserve my energy so that I don't meltdown. I would not have known that that was even an option for me because before I knew I was Autistic I did not have any reason to understand why I had trouble with speech sometimes when no one else did. So since, in my understanding, there was no reason for me to not be able to speak, I would just assume that I could and I would push myself beyond my limit and then end up crashing badly because I was so drained. And then when I was confronted on crashing badly because there was no obvious reason for me to crash, I would say to myself, "There is no reason for you to crash, no one else is having this trouble and there is no explanation for it and they are all complaining at you for crashing and telling you to get up and get about your life," so you have to be able to get up and go about your life. So I would push and push and push my body and after years and years of this my body started to not be able to handle it. But there was no obvious reason for that either so they would just confront me more and I would just keep trying because I had no explanation for it other than I was just lazy.

I also growing up always just assumed I was an evil person because my responses to sounds and other sensory stimuli would annoy other people and they would always let me know how much I was bothering them by being so sensitive and that I was being unfair and mean to them because of my sensitivities. And this is the same for most of my traits. I was called super immature because of my child like nature, I was bullied because I could not walk fast enough and the list goes on. So my whole life I always considered that I was just a bad person who, for no apparent reason, just bothered other people and made others miserable. Some of my communication errors actually split up a family. So with no other explanation for why my sheer existence did so much damage to other people and caused me so much trouble physically, mentally, and emotionally, the only conclusion that I had was that I was a terrible person and a that I was just a bad seed. And this is what I have thought of myself until I was told about Autism. I only learned about it three years ago and I have only been diagnosed one year.

And when I found out about it, I knew nothing at all about the condition except for the movie Rainman. That was the absolute extent of my knowledge. Now I was told for the first time that I was Autistic at the age of 45 and I got diagnosed at the age of 47. If I had been found out and diagnosed at 2 or 6 or 12, I would have had a lifetime of people in my life, parents, teachers, and a whole support group of people. Over the course of my life I would have learned about what Autism is and people would have supported me and helped me. I know that that might not be the case for every single person who is diagnosed young, but for the majority of people who have loving parents, it is. People would have done everything they can to help me understand my issues and explain to me that the issues that I have are just part of Autism and it's fine to have them and that I am not a bad or evil person because of it. And again, I know that there are some who come from not so supportive situations, I understand that.

But when you grow up and constantly hear or get treated like, the way you talk is bad, the way you relate to others is bad, the way you walk is not good enough, the way you turn your head when you look at things is bad, the way you breathe is bad, the way you play is bad, the way you respond to sound is bad, the way you respond to light is bad, the way you get tired all the time is bad, the way you can't hold a job is bad, why can't you just walk faster, we don't want to be your friend because you are weird, why can't you just...." and you never, not even one time in your entire life get any explanation as to why any of this is happening, and every time you have a meltdown or something you get spanked or reprimanded, you really wonder what your problem is and the only thing you can think of is that you are a bad person. Because you experience this in every single situation you are in, no matter where you live, no matter whom you are with. Your parents, your acquaintances, your work situations, you marriage, every single environment you are ever in you encounter this. So the only option you are left with is, "I must be a horrible person and since there is no reason, it must all be me and my fault."

I am sure that not every single person who is diagnosed late has felt this way but this is how I felt. This is my experience.

Once I found out I was Autistic literally, after 45 years, in one day, all of this started to change. One day I was just this evil weirdo whose very existence was a problem for everyone around me, and the next day I realized that there was a thing called HFA and another thing called Misophonia that might hold some answers as to who I was and what I was. So I was told. But I still knew nothing about it. So what was I do then? Just go on with my life as usual because now I know I have this thing called Autism and Misophonia? I needed to know more about what these things mean and how I am specifically affected by them. And the only way to do that is to learn. And the only way to do that is to research.

Now once I started learning and realizing that I am not this evil b***h who ruins everybody's day by just simply trying existing, I started to get some real answers and real relief and understand how I can better live my life without the constant damage being done to my body by trying to live up to everyone else's expectations. So as I learned more stuff I would share that stuff with the people who are closely in my life.

Well, as we all know, Autism is very complicated, there is a whole lot to it and if affects every area of our lives. You can't just go about your life and ignore your Autism. Because of Autism everything in life affects you. You can't ignore your Autism and go about your day when you are constantly 100% of your day being bombarded with sensory overload from all the sounds around you. So if you say, "well I am not going to bother learning about how that works and if there is anything I can do to make it better for myself because I need to just get on with my life," you are not going to do any better with getting on with your life than before you knew you were Autistic. And the only way one can learn these things is by researching them and learning them. So for someone to tell me to stop learning about Autism so that I can get on with my life makes no sense at all. I can't live any part of my life without being affected by Autism. It's not possible. If I ignore my Autism to go on and live with my life that just makes no sense.

Now I understand the concept of being obsessed with researching something and not doing anything else at all at the expense of that. But that is absolutely not the case with me at all. It might be for some people and if it were the case for me I would know it and I would admit it. It's just not the reality of this particular situation. If it were, nothing else in my life would be getting done and my husband would certainly have brought it up. If I were spending more time researching anything than would seem appropriate, my husband would be all over me about that and my brother would as well.

I have already explained in a previous post how I actually do "research." When something affects me I have to figure out what it is to get through it. So I research. And since Autism is so prevalent in every part of my life, a lot of my research will be about Autism. For 45 years, I barely survived my life living in a state of perpetual burnout, destroying nearly every relationship I have ever had, not being able to work or accomplish much of anything and physically being barely able to function for much of the time. Now the person who had this email exchange with me does not know that because as a closet sufferer of symptoms I had no understanding of, I only let them see me when I was strong. So much of my time was spent in situations where it was safe for me to be alone like I was a marathon runner at one point, spent lots of time running outside for miles by myself. I could come home from school and under the guise of lots of homework I could stay locked in my room and not have to interact with anyone if I was not up to it. So I had lots of tricks like that. But I had to stay hidden because if I dared show any signs of Autism of Misphonia, I was punished for them.

Now, because I am learning about Autism and how it affects every part of my life I can make choices that will help me actually live my life and not just barely survive it like before. I can educate my loved ones so that they can understand me as I learn to understand myself. For the most part it is working great. I now have the freedom to stim in front of them and it's now okay if I can't talk or attend a social event. They now understand that when we are on a hike or a bike ride or walking to something there is no way I will be able to keep up their pace no matter what I do so they may have to just walk or ride more slowly. They now understand that a meltdown is not a bratty temper tantrum so if I have one it's because my body is responding to some kind of overload. Now I don't get stupid questions as often like, "What makes you qualified to be allowed to be in Special Olympics?" Now it's, "Wow, you got a silver medal or a gold medal, we know how hard it was for you to get that, we are really proud of you."

And the most important thing is that I am educating myself about all of these things. Now I am learning and understanding how things in my body physiologically work differently from the bodies of my friends and family members. Now I understand that if I don't have the executive functioning ability to do something there is a reason. I am not stupid, I am not lazy and I might just need to make this or that adjustment to compensate. I don't have parents or teachers who are going to educate me about who I am and how I work. I don't have anyone who is going to help me understand what Autism is and how to make adjustments and compensations in my life so that I can actually live my life. Only I can do that. So it makes no logical sense for someone to tell me to stop learning about Autism and just go live my life.

the issues that I have are just part of Autism and it's fine to have them and that I am not a bad or evil person because of it.

I don't think you should stop researching autism if you don't want to stop, but I don't think this person is wrong to tell you to stop doing researching autism.
It is only a suggestion from a relative, so you can choose not to take it and move on from it.
Probably since you are close with this person, you care enough about relationship to not let this email damage anything between you.
I disagree with those in this thread who say this person is bad person for sending this email.
I agree a lot with this person in general.

I like you Skibum, I wish I was as nice as you.

I find comfort in this too, after a lifetime of failing abysmally in every single aspect of my life, for reasons that make no sense whatsoever... Unless you understand the hidden challenges of ASD, and then my life makes total sense.

You're doing well to accept that not everyone in your life will understand what you're going through. My brother politely pretends that I'm 'normal', and I pretend too for his sake - and that's how we deal with it!

This entire post relates to me, and/or I relate to this entire post. I practicalyl could've written it myself about myself.

You had to spend 45ish years feeling all wrong, sucking it up and breathing it in and exuding it and feeling it every minute of every part of 45 years.. it's BEYOND unfair to expect you to get sixty seconds of "your diagnosis is autism and misophonia" and then jump back into the same exact life but with a completely different mindset. Some things take time for heaven's sake. You have to reprocess 45ish years worth of stuff and re-structure your entire being around the understanding of yourself and you have a right to go back and feel pretty angry and being forced to feel bad about things you had no control over, and to want to go back and point things out to the family and say "this wasn't my fault. You all treated me like I was being difficult and defiant but I couldn't help it." - I would be feeling as though they were basically refusing to acknowledge my hurt and I would probably quietly be hoping for an apology, maybe even a gut-wrenching cry session full of guilt-wracked sobs and apologies over treating you this way all those years and a plea of how can we make it up to you, personally.

Course all I got was my husband saying "Great now I have NO hope that things will ever change".

Yep, totally get where you're coming from. I'm glad you're feeling better about things today (at least it sounds like it).

You taught me to understand Misphonia better.

I really didn't have much idea about it until I "met" you.

You are much more introspective than me.

Would this conversation have bothered anyone else here or is it just me?

It would have bothered and confused me.

It bothers me when people make incorrect assumptions about me and then go on and on telling me what to do or not do based on those assumptions, regardless of anything I say or ask to try to clarify things. I don't understand how the communication breaks down, and it's hard to come up with possibilities other than "they aren't listening/don't care what I have to say" -- because even though there are other possibilities, I can't necessarily imagine any of them. (And it infuriates me when people act like they know my inner experiences better than I know them myself and make it very clear that they don't care what I have to say.)

That attitude about researching autism, or researching anything upset me too. I am very interested in autism research too, and that study in particular.
It is more than a possible way to diagnose autism but a real health issue.
The study was released in 2011 and I don't know if there has been any follow up studies to test the validity.
All of the children in the study were being treated for chronic unresponsive cough.
49 out of the 459 children being treated for chronic cough had ASD. That's 10.7%, much larger than the general population and all of the autistic children had the bronchial abnormality and none of the non-ASD children had it.
It could not be determined if all or just a subset of ASD people had the abnormality so it needs to be done with larger populations and greater control variables.
I don't know what my bronchial airways look like but I do get chronic unresponsive coughs.
Every year I dread getting a simple cold with a cough because I know I will be coughing for months and it hurts, it's very uncomfortable. I would like a cure for that.