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skibum
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13 Sep 2014, 1:23 pm

jk1 wrote:
Sorry, skibum, for disagreeing with you, but I could understand what billi was saying in the OP itself. I thought I might paraphrase it but then I can see L_Holmes has already done it beautifully (in the 19th reply).


No need to apologize jk1. I am fine if you disagree. I think that there was some confusion though. I assume that the post you are referring to from L_Holmes is this one:
"I could see how it might be annoying for some if they see someone claiming that they probably have ASD, yet have few problems in life with social interaction or functioning in general, because in an indirect way it does downplay the issues that many on the spectrum have; in these cases they seem like they have not really put in a whole lot of thought about it, and it is confusing to me sometimes because I don't understand why they are wondering about it if they don't have any problems in the first place. Some people I've seen that have done it admit that they haven't had many, if any, significant problems."

Please correct me if I am wrong. I did not count the post entries. I agree with what L_Holmes has said and I understand that Billiscool feels this way. I have no problem with that. The problem is that in the OP, he does not actually say this. He may have meant this, and I see that he has clarified later once L_Holmes posted this that this is indeed what he meant. But in the OP he made a broad generalized statement that was easily perceived that pretty much everyone who is unofficially diagnosed puts down others who are officially diagnosed all the time on this site because of their suffering. That is not true nor is it fair. And he did not use those words exactly but that was very much what I perceived that he meant by how his OP was stated. And I don't think I was the only one who perceived it that way. So for those who perceived it that way, it made no sense that he would say such a thing because it is just not true.

Then he spoke about one specific member who used to do that. So in that case, the appropriate thing would be to talk about it directly with that one member and not accuse every other undiagnosed person of doing this. This is what I said.

Now what L_Holmes said actually is a valid point and I can see how people would feel what they feel according to his point. And I agree that it is a valid point and one that people may need to think about. Personally, I think that if your life is not impaired you are not disabled. At the moment I am one of those people who is unofficially diagnosed. But there is a reason for that. It does not mean that I don't suffer, it does not mean that my life is not impaired. I have some friendships and I am married and even though I have those relationships, they are not easy. I think it can be a great mistake for those who are not capable of having those relationships to think that just because some people who are on the Spectrum have them, those relationships are easy. Trust me, they are not easy to maintain at all and most of the challenges come from Spectrum related issues.

Also those on the Spectrum who have jobs don't always have an easy time with their jobs either. Many are extremely challenged trying to function at their jobs. So just because someone is able to do these things does not mean that it is not super challenging for that person. And just because someone is not officially diagnosed. it does not mean that that person is not on the Spectrum and dealing with the challenges that diagnosed people deal with.

But as far as people putting other people down because they suffer, that is just not the case here. Now what L_Holmes said, where people might feel like they are being indirectly put down because other people might not struggle as much as they do, that is not the doing of the person who is not struggling as much. That feeling is coming from the person feeling it. There is nothing that can be done about that and the person feeling it just has to understand that that feeling is coming from within his or her own insecurities and he or she has to overcome that within him or herself.

A better way for the OP to have stated his feelings would have been to say, " I feel annoyed because I feel like I am being put down because of how people express and share about their life situations" and then gone on to give more specifics on why he felt that way. Then if he wanted to talk about that we could talk about it. But to just say I am annoyed because people are doing this is not fair because people are not doing that. No one is directly or purposefully putting anyone else down because of their suffering so it is an unjust accusation. And people who may or may not be on the Spectrum who are sharing their lives, I am sure, they are not thinking, "how can we put down Billiscool every time we post." I think they are just sharing their lives just like every ones else is. And if you don't like their lives then don't read their posts.

Bottom line is, unless you are another person or unless you know that person personally, you have no idea what his or her life is like outside of what you read on a post. You don't know what that person struggles with. There are many things that I struggle with immensely that I never write about. You have no idea what that person deals with in a marriage or in a job or in a friendship day to day. If they don't tell you, you don't know. So for you to assume that they don't struggle or for you to assume that they are putting people down, those are huge assumptions that you really don't have a solid basis to make. So I recommend that you try not to get annoyed by what you assume someone might be doing because you could be totally way off. And you certainly can't make a judgement about how easy or difficult a person's life is unless you know that person personally and I doubt that is the case on an online forum. You also can't tell if the person is on the Spectrum or not by just reading posts. So I think it is best not to make these kinds of assumptions and if you don't like what someone is saying, don't assume that he is trying to put others down, just move on to another thread or post.


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13 Sep 2014, 2:50 pm

but if a person is not officially diagnosis with ASD,then how do they really know
they overcame ASD.Or prove to people you can succeed with ASD,if they
may or may not actually have it.



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13 Sep 2014, 3:08 pm

billiscool wrote:
but if a person is not officially diagnosis with ASD,then how do they really know
they overcame ASD.Or prove to people you can succeed with ASD,if they
may or may not actually have it.


You don't know 100% for sure if you have it without an official diagnosis, that is true. But even with an official diagnosis, the diagnosis can still be incorrect which seems to be the case for quite a number of people. So either way you don't know 100%. But there is a diagnostic criteria that you can look at. It is very explicit. The symptoms are very clear. There are documents and books which are also very clear and very detailed in explaining what Autism and Asperger's is. No one knows you better than you know yourself. No one knows how these symptoms affect your life better than you do. You also have loved ones who know you well and who can tell you what they see in you. Even though you can never be 100% objective, you can be objective enough to know what you suffer from and how it affects your life. I know what happens to me when I hear certain sounds. I know how I am affected when I get sensory overload. I know what happens to my skin and how it feels when I am touched, I know the executive function issues that I have and how they have affected my inability to hold jobs. I know the reciprocity issues I have with communication, people tell me about them in almost every conversation. I know that I have a hard time understanding what people are implying or saying sometimes. I know that I stim and do large body repetitive movements. I remember my childhood. I remember how in the entire three years of junior high I was never able to make a single friend. I know that I had no concept of dating or understanding of these social things in high school and the list goes on and on. So when I look at the diagnostic criteria or a list of symptoms and traits and I recognize myself in almost every single one of them and my life is greatly affected to the point of almost daily impairment and has been my entire life, then I can pretty much assume that I most likely have an ASD. Now can I sign that in blood and say it with 100% accuracy? No. But for me, personally after first of all, being told that I had an ASD by someone who observed my daily behaviors for hours at a time every three days for 8 months and then after doing 18 months of exhaustive research on the subject, I think I can pretty much say that I am pretty sure that I am on the Spectrum somewhere.


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13 Sep 2014, 3:14 pm

And by the way Billiscool, what exactly is "Other Autism Spectrum Disorder"? I see on your profile that that is what you say you are diagnosed with.


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13 Sep 2014, 3:42 pm

I don't see why anyone should have to justify themselves to anyone on WP, whether they are diagnosed or not.

The OP's being a prick in my humble opinion.


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13 Sep 2014, 3:47 pm

babybird wrote:
I don't see why anyone should have to justify themselves to anyone on WP, whether they are diagnosed or not.

The OP's being a prick in my humble opinion.
I agree. I always like to give people the benefit of the doubt when it comes to the prick department but we have had this song and dance with Billiscool a few times before so I have to wonder sometimes. And Billiscool, really, if you do mean well, please say so because I would still love to be proven wrong about you with this.


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13 Sep 2014, 4:00 pm

DeepHour wrote:
And what should that tell you about the "experts"?


Being tolerant of someone's diagnosis (official vs informal) is a two way street; in all fairness, they are the ones who have no incentive to cherrypick symptoms to match what's in Tony Attwood's book, they see aspies every day in their office, they have their share of people who they give negaitive diagnosis, and they have the best understanding of what typical behavior and thought patterns are of an adult. You can know yourself 10x better than anyone you have ever met, but that also means you know much less about what is normal, as people have wayy more issues than what they show off in public. It's a mix of art, information, and analysis..and years of post grad studying. This is the last place to take jabs at the psych community when we are willing to give the unofficially diagnosed the benefit of the doubt.



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13 Sep 2014, 4:21 pm

skibum wrote:
And by the way Billiscool, what exactly is "Other Autism Spectrum Disorder"? I see on your profile that that is what you say you are diagnosed with.


pddnos. I was diagnosis at 3 years old. I had speech delay,so
that why Im not Asperger,but it's all ASD now.



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13 Sep 2014, 4:32 pm

skibum wrote:

Even though you can never be 100% objective, you can be objective enough to know what you suffer from and how it affects your life. I know what happens to me when I hear certain sounds. I know how I am affected when I get sensory overload. I know what happens to my skin and how it feels when I am touched, I know the executive function issues that I have and how they have affected my inability to hold jobs. I know the reciprocity issues I have with communication, people tell me about them in almost every conversation. I know that I have a hard time understanding what people are implying or saying sometimes. I know that I stim and do large body repetitive movements. I remember my childhood. I remember how in the entire three years of junior high I was never able to make a single friend. I know that I had no concept of dating or understanding of these social things in high school and the list goes on and on. So when I look at the diagnostic criteria or a list of symptoms and traits and I recognize myself in almost every single one of them and my life is greatly affected to the point of almost daily impairment and has been my entire life, then I can pretty much assume that I most likely have an ASD. Now can I sign that in blood and say it with 100% accuracy? No. But for me, personally after first of all, being told that I had an ASD by someone who observed my daily behaviors for hours at a time every three days for 8 months and then after doing 18 months of exhaustive research on the subject, I think I can pretty much say that I am pretty sure that I am on the Spectrum somewhere.


I have no idea what sensory overload is.If you don't like being touch,how do you have
husband? I have no Idea what stim is. Did you have male friends,boyfriends in school,
alot of time,when women say they have no ''friends''they usually mean,they
have no female friends. Who told you had ASD,and how come you never
got an official diagnosis,How come your parent never got you diagnosis.



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13 Sep 2014, 4:59 pm

billiscool wrote:
skibum wrote:

Even though you can never be 100% objective, you can be objective enough to know what you suffer from and how it affects your life. I know what happens to me when I hear certain sounds. I know how I am affected when I get sensory overload. I know what happens to my skin and how it feels when I am touched, I know the executive function issues that I have and how they have affected my inability to hold jobs. I know the reciprocity issues I have with communication, people tell me about them in almost every conversation. I know that I have a hard time understanding what people are implying or saying sometimes. I know that I stim and do large body repetitive movements. I remember my childhood. I remember how in the entire three years of junior high I was never able to make a single friend. I know that I had no concept of dating or understanding of these social things in high school and the list goes on and on. So when I look at the diagnostic criteria or a list of symptoms and traits and I recognize myself in almost every single one of them and my life is greatly affected to the point of almost daily impairment and has been my entire life, then I can pretty much assume that I most likely have an ASD. Now can I sign that in blood and say it with 100% accuracy? No. But for me, personally after first of all, being told that I had an ASD by someone who observed my daily behaviors for hours at a time every three days for 8 months and then after doing 18 months of exhaustive research on the subject, I think I can pretty much say that I am pretty sure that I am on the Spectrum somewhere.


I have no idea what sensory overload is.If you don't like being touch,how do you have
husband? I have no Idea what stim is. Did you have male friends,boyfriends in school,
alot of time,when women say they have no ''friends''they usually mean,they
have no female friends. Who told you had ASD,and how come you never
got an official diagnosis,How come your parent never got you diagnosis.


Billiscool, have you been diagnosed only at the age of 3 years or did you get a confirmation of ASD later with an adult diagnosis?
If you don't have any problems with a hypersensitive nervous system and you don't know what sensory overload or over stimulation
feels like and you don't need to do stimming (body movements and sounds that calm the nerves), maybe you got wrongly diagnosed
with ASD as a child, because you had that developmental speech delay? Such things do happen and it might be useful to have another
test done to make sure it's really ASD and not some other disorder.
Such an assessment costs hundreds of dollar though, ( I would have to save up a few years before I can afford it myself), and I never
got diagnosed, because it was before 1994 and I didn't have speech delay in childhood, maybe it's the same with skibum.)



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13 Sep 2014, 5:15 pm

Birdsleep wrote:

Billiscool, have you been diagnosed only at the age of 3 years or did you get a confirmation of ASD later with an adult diagnosis?
If you don't have any problems with a hypersensitive nervous system and you don't know what sensory overload or over stimulation
feels like and you don't need to do stimming (body movements and sounds that calm the nerves), maybe you got wrongly diagnosed
with ASD as a child, because you had that developmental speech delay? Such things do happen and it might be useful to have another
test done to make sure it's really ASD and not some other disorder.
Such an assessment costs hundreds of dollar though, ( I would have to save up a few years before I can afford it myself), and I never
got diagnosed, because it was before 1994 and I didn't have speech delay in childhood, maybe it's the same with skibum.)


pddnos,asperger,hfa,lfa are all ASD now. Im just told I have ASD,it's on my record.



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13 Sep 2014, 5:57 pm

billiscool wrote:
Im kinda of getting annoyed of people who
never been official diagnosis with ASD,Asperger,HFA..
puting the rest of us down,because we struggle
with social skills. I see people talk about how
they had a successful love life or how they go
out and meet people.Yet,on their profile or
on the forum,they admit they never been officially diagnosis.

Should the undiagnosed be banned?

Maybe the undiagnosed should have their own forum?

Maybe the undiagnosed should have to start each post declaring their unofficial status?

Should WP have an election to decide whether or not to split up like Scotland and England?


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13 Sep 2014, 5:59 pm

^^I'd be surprised if he even knows what you are on about. In fact I'd be surprised if the guy even know what he's on about himself.^^


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13 Sep 2014, 7:39 pm

billiscool wrote:
skibum wrote:
And by the way Billiscool, what exactly is "Other Autism Spectrum Disorder"? I see on your profile that that is what you say you are diagnosed with.


pddnos. I was diagnosis at 3 years old. I had speech delay,so
that why Im not Asperger,but it's all ASD now.
Oh, ok, Cool, Thank you for letting us know.


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13 Sep 2014, 8:55 pm

billiscool wrote:

I have no idea what sensory overload is.If you don't like being touch,how do you have
husband? I have no Idea what stim is. Did you have male friends,boyfriends in school,
alot of time,when women say they have no ''friends''they usually mean,they
have no female friends. Who told you had ASD,and how come you never
got an official diagnosis,How come your parent never got you diagnosis.
Billiscool, as long as you are not being mean or asking these questions in a jabbing way, I am more than happy to help you understand. I want to give you the respect to think that you have good intentions in asking and that the confusion is just coming from a miscommunication. So I will do my best to answer your questions and help you understand.

!. I have no idea what sensory overload is.
Sensory overload happens because my brain is constantly processing things like sounds and what I see or touch at a rate that is slower than other people. If I have too much sensory information coming in, I get overloaded. If someone speaks loudly or quickly, or if there is a lot of loud music or people are driving by my house with loud cars and motorcycles or playing bass on a stereo, and the sounds don't even have to be loud, they just have to be there, I can't process them fast enough in order to keep up with them. It's like if you overload your computer, it will crash. It is pretty much the same thing that happens to me. A good analogy is if you have ever watched a really suspenseful movie, you know that feeling you have when you are on the edge of your seat during the whole movie, caught up in the thrill of the suspense? That is very exhausting for the brain to process. That is how daily life is like for me so I get brain exhaustion very easily and normal sounds and sights and people's movements can cause me to overload very quickly.

2. Having a husband is extremely difficult. He has to be very careful how he touches me since I am so sensitive and I end up pushing him away a lot. He knows that I have these issues. I try my best to tolerate him touching me a little bit because he needs it but I can't have it a lot. We don't have a lot of sex or physical contact. I do have sex with him sometimes, as often as I can tolerate it because he needs it but I only do it as much as I can tolerate. We do spend a lot of our time together kayaking and bike riding and skiing and snowboarding doing things like that. There are some touches that I actually do like, I like good strong touches like hugs and when my husband puts the full weight of his hand on my back. I can't stand super light touches like a light love scratch or a light brush of the fingers or the sensation of being breathed on. When we are holding each other he turns his head to not breath on me. We try to be really considerate of each other's needs and we try to help each other as much as we can. Sometimes I just have to endure it. We actually spend a lot of time apart because he knows that I need space and solitude to recover from social interaction. But he needs to be with me for his needs to be met so we try to compromise and help each other as much as possible. I do my best when we are together to meet his needs as much as possible even if it hurts me sometimes because I know that I will have my time of solitude.

3. Stimming is actions like rocking back and forth which I do and other various actions we do with our bodies, We can also do vocal stims like humming or singing a line of a song over and over again for hours. Stimming has a neurological response on the body that helps the body calm itself. I do it a lot when I am overwhelmed or anxious and sometimes when I am bored. Also it can be involuntary, like your body will just start doing it without you realizing it. It is very soothing and helps you calm down.

4. I did have some male friends in school, in high school I had two and in college I had some from my church. I never had a boyfriend until my husband. But I never considered my husband my boyfriend because we never really dated. We just became really close friends until we were so close we had to get married since we both have religious convictions about not having sexual contact before marriage. I only ever heard my husband call me his girlfriend once and it was really weird for me to hear that since I did not really think in those terms. I did have a weird relationship in high school once where a wonderful boy considered me his girlfriend for three years and even took me to both of my proms and I never understood that I was his "girlfriend", I did not really understand the whole dating scene. I was never into it and I never really understood it. when the boy and I went out we were usually with a group of his friends or when we were at his house we just listened to Beatles Albums together and I would play with his sister as well so I never understood that he was actually dating me. When he told me three years later I was shocked.

But the other friends I had were also not popular kids and our friendships were very intellectual. I had four friends in high school, the one who liked me that I had no clue that he liked me the whole time and his sister, a boy who was very intellectual, and another girl who was very intellectual. In middle school the only friends I had were the kids of my parents friends and we played together sometimes. I played with some of the kids who lived on my street but they did not really consider me their friend. I was just there outside with the kids. I never really fully understood most of what they were talking about and always felt weird and out of place. And I was never invited to their parties or anything like that.

4. I was first told that I have ASD by a person who befriended me a few years ago. At the mountain where I ski, he is one of the people who manages one of the ski room areas. But every time after I ski, I try to ski three to five days a week and our winters are about three to four months, I go into the his area to clean my skis because they have countertops that I use to put my stuff on. During the evenings this guy is one of the ski area managers but his regular job that he does every day is that he is a guidance counselor for ASD students. So as I was coming in there to clean my skis, it takes me an hour or so to do that, he would observe me. He started getting to know me and talking to me and he became my friend. He spend hours watching me interact with other people in the rental room, some people I had gotten to know like employees and others were strangers, just ski patrons. He talked to me a lot about my life and never let on that he was observing me the whole time. He would also consult with his colleagues about me a lot. After two ski seasons of this, a total of four months, he finally pulled me aside and told me that he was sure that I was on the spectrum. He said that it was obvious to him from the very first day he saw me but he wanted to observe me and get to know me and consult with other experts about me before telling me. After we talked about it I did a ton of research because I had no idea what Asperger's or Autism really was. I spent the next 18 months researching and that is when I found WP. I also realized in my research that I have Misophonia and that I developed that when I was ten. I have read Tony Attwood's book "The Complete Guide To Asperger's Syndrome" more than once I have listened to some of Tony's recordings and seminars. I have recognized myself all over this research and looking back over my childhood I can see signs that are very consistent and telling according to the research. I also have a relative who is a psychiatrist who has been evaluating me as well and that person concurs that they believe that I am on the Spectrum. I did not grow up in a location close to that relative so they were not able to really observe me growing up. Also the person is retired and because they are a biological relative they are not legally allowed to diagnose me formally.

5. My parents never got me diagnosed because I was born in the 1960s. Back then there was no such thing as Autism Spectrum or Misophonia diagnoses. These diagnoses did not come to the public forefront until twenty to thirty years after I was born. Misophonia was not even medically known about until the mid eighties so those of us who had it had no explanation for it and we were just punished as misbehaving children when we had a Misophonic or ASD issue because people thought we were just misbehaving.

If you were not very severe or very low functioning no one knew that they should diagnose you for something like Autism. I did not have speech delays or physical growth developmental delays and these are part of what distinguish Asperger's from classic Autism. Also I am a girl. The symptoms in girls can take a much longer time to show and girls can be much better at hiding their symptoms than boys. So the signs that showed when I was very little like my "Aspie stare" which is in a lot of my little girl pictures, were just not noticed by my busy parents. they did not know to notice that or to think anything was wrong with that. The fact that I took a long time to tie my shoes or catch a ball or swim did not seem unusual to them, they just figured I would learn eventually. I was pretty normal in my affection and play as a little tiny kid so they did not notice the small things that were actually Aspergian. Like with many girls my real signs started to show around the age of eight and then got more obvious as I got a bit older. That is when a lot of the social signs started showing. Also my family moved every few years because of my dad's job so they could not really see how my friendships developed or did not develop over a time period because we were constantly moving. But most of my more severe symptoms really started showing as I became a pre teen and that is very common for high functioning girls. By then I was very good at just locking myself in my room so no one really saw too much of what was going on with me to notice. I could also mimic social behavior very well which is another documented reason why many Aspergian girls fall through the cracks and never get diagnosed.

I did not get diagnosed as an adult because I did not know anything about Autism and so I never knew to look at that. I always knew that I was different and weird and that I struggled immensely every day. There were many times when I even felt like I was not even a human being. I just had no idea that there was actually a reason or a name for what caused my struggles. It was not until this past two years that I even learned about ASDs for the first time that I realized that all of my struggles and issues have an actual reason

Now that I am an adult a diagnosis is a bit harder to get. My insurance will not pay for adult diagnosis at all. They refuse to pay anything towards a diagnosis for ASD if you are not between the ages of two and six years old. And in the United States, a diagnosis can cost in the thousands of dollars. In my area where I live that is the case. And because the benefits you can get as an adult with high functioning ASD are so limited, coming up with thousands of dollars to pay for a diagnosis is something that you really have to consider if it is worth it to you especially when you struggle to pay to pay day to day bills to begin with. And don't think that I am rich because I ski and kayak. I make huge sacrifices to do those things. Our boats are used and old and were given to us and the place where we ski is a little tiny hill which costs very little for a season pass. And my ski gear was all stuff that was very much on sale since it was two seasons old when I bought it and I still had to do it on layaway. So that is why I have not been officially diagnosed.

Now, just within the last two months, God has blessed me with an opportunity to get officially diagnosed and I am looking into it. Hopefully it will all work out. If it works out I will let you all know.

Billiscool, I hope that I have been able to help you understand now. Please let me know if you have more questions. And like I said, I am willing to happily answer your questions because I do not want to believe that you have bad intentions. And hopefully answering your questions can help others as well.


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