Desperately seeking answers about adult Aspergers

[itsme]

Hello,

I am a 32yo male with a limited knowledge on Aspergers and don't really know where to begin. I'm looking for answers to several questions, but at the same time I'm not sure what questions I should be asking. I will do my best to explain, and maybe someone can help direct me or give me some guidance.

I have always had trouble making friends and have never been in a place where I feel as though I fit in. I've always described myself as a "social outcast", like one of the misfit toys from that old Rudolph the Red-Nosed Reindeer film. I feel like something about me is broken, but I don't know how to express or convey to others exactly what I mean by this.

I had heard of Aspergers before, but what really caught my attention was the NBC television show Parenthood. The character of Hank (portrayed by Ray Romano) in many ways felt like the character was based completely off me. I realize that the show is a work of fiction, but because of how relatable the character of Hank was, I looked into Aspergers a little deeper and on a more personal level.

I don't know how reliable the standard (?) Aspergers test is (referring to the 50 question AQ test) and I know that the fine print always states "not a tool for diagnosis" but I have scored between 36 and 44, depending on when I have taken it.

The results scare me somewhat, but not because I may have Aspergers but because if I don't, I worry I am just a broken, lonely, socially-awkward person frequently perceived as a "prick" because I can't relate to people.

I despise social situations, crowds, meetings with people and any changes to a comfortable, set routine. I rarely (if ever) do anything spontaneous because it makes me uncomfortable. I find people completely un-relatable and do not make or keep friends easily. I feel like most people avoid me because they can't relate to me, either, or think I am too odd.

I often become very invested in a topic or hobby, and when I try to express my interest with others they just don't understand or seem to care. I have never met anyone in my life who I feel I can relate to in terms or sharing my interests and hobbies with.

I've been accused of being "cold" or "not caring" but I find that a lot of the time it's because I'm completely unaware that anything was "wrong" in the first place. (For example, offending someone and literally not realizing that I offended them. Additionally, not being able to understand HOW they could be offended or WHY they are. This happens all the time.)

At the same time, I don't feel I have too difficult a time making eye contact with people or reading someone's emotions (two stereotypical signs of Aspergers). Eye contact is not always easy, but it's not something that I am incapable of.

I live in the U.S. and do not currently have access to affordable health care. I would like to know where to go to get a diagnosis or how to even begin that, even if I had to pay out of pocket.

Writing this is difficult and I don't know if I have expressed myself in any coherent way, but I have no one in my life that I can speak to about this and so I have turned to this forum. Thank you.

 

[Ereth]

Welcome!

Try browsing the forum, You'll find that many of us feel similar to you. In addition, you don't necessarily have to have every box checked to qualify as having ASD---autism is not a one-size-fits-all type of thing. Everybody's different.

 

[itsme]

Welcome!

Try browsing the forum, You'll find that many of us feel similar to you. In addition, you don't necessarily have to have every box checked to qualify as having ASD---autism is not a one-size-fits-all type of thing. Everybody's different.

Thanks.

 

[Thea]

I understand where you're coming from. When you said it felt like something was broken it was like you put into words something that I felt. That's the exact same feeling that drove me to find out why I felt that way. I believe the first step towards official diagnosis is to go and visit a psychiatrist? It might be different in the U.S. but thats how it works here. Good luck.

 

[StephF]

As Tony Atwood says, when you've met one aspie then you've met one aspie

 

[Salmongirl17]

Hello and Welcome!!

 

[livingaspie]

Enjoy the ride. It is where you're supposed to be.

 

[itsme]

Thanks, everyone.

Any tips on how to go about getting a diagnosis without health insurance? I suppose I'll pay cash or out of pocket, I'm just not sure how to really go about it. Is it with a psychiatrist, and if so, should I seek a specific type? What's the best way to find a specialist? I live near Columbus, Ohio.

Additionally, how many meetings (approximately) might it take for a diagnosis? I ask not because I expect an immediate answer, but because doctors are expensive and I have to pay my own expenses.

Thank you.

 

[reveric15]

Do you need an official diagnosis, or are you just curious? Because if there is no specific reason to have an official diagnosis then I would say stick to self-diagnosis. There is nothing "wrong" with being an Aspie, which is what it sounds like you are, and you can learn and connect a lot online with forums like this one. You shouldn't need much else to deal with the NT world. We are awesome!

 

[Ste11aeres]

I've been accused of being "cold" or "not caring" but I find that a lot of the time it's because I'm completely unaware that anything was "wrong" in the first place. (For example, offending someone and literally not realizing that I offended them. Additionally, not being able to understand HOW they could be offended or WHY they are. This happens all the time.)

At the same time, I don't feel I have too difficult a time making eye contact with people or reading someone's emotions (two stereotypical signs of Aspergers). Eye contact is not always easy, but it's not something that I am incapable of.
.

This actually sounds very typical of Aspergers. Many of us do often sense other's emotions quite well. We also sometimes don't know why they're feeling that emotion (especially if that emotion is one of being offended at us). And NTs often purposely do body language in order to purposely consciously convey an emotion, and we don't pick up on that.

 

[itsme]

Do you need an official diagnosis, or are you just curious? Because if there is no specific reason to have an official diagnosis then I would say stick to self-diagnosis. There is nothing "wrong" with being an Aspie, which is what it sounds like you are, and you can learn and connect a lot online with forums like this one. You shouldn't need much else to deal with the NT world. We are awesome!

I would like an official diagnosis because I don't think anyone would take me seriously or believe me otherwise. I think knowing "for real" would be helpful.

 

[Judge]

I would like an official diagnosis because I don't think anyone would take me seriously or believe me otherwise. I think knowing "for real" would be helpful.

Welcome to AC. From what you've posted, you've cited what I'd consider to be some pretty mainstream traits and behaviors of ASD. That said, I wouldn't rely on the logic of a formal diagnosis to validate yourself to Neurotypicals. Especially hostile ones who simply default to the notion that you MUST conform to THEIR sense of behavior rather than your own- autistic or not.

I'm self-diagnosed myself, having spend at least a year and a half now having stumbled onto my own mild case of autism. I've found this place to be a very valuable resource and hope you can as well. One thing I've concluded is that if I were to seek such a diagnosis, I would only consider a psychiatrist's evaluation who formally specializes in autism. And as also being uninsured, recognize how costly an out-of-pocket diagnosis might be. ($1500-2500K?)

In my case, in my late 50s I don't see any urgency towards getting such a diagnosis. As far as ever looking for work in a struggling economy, my biggest problem is inescapable. Age discrimination given the cost of group healthcare for people my age. No one wants to hire us with benefits. Nor do I see my being mildly autistic as any kind of real compensable disability. Seeking a formal diagnosis would likely only be for my own edification at best.

I've also concluded from reading so many posts here is that most everyone here is involved in a deep sense of discovery over their own perceived autism. That in most cases, those who thought they were on the spectrum went on to a formal diagnosis which confirmed their own suspicions and intuition. I'm certain that I'm on the spectrum, whether I ever get formally diagnosed or not.

If you do feel compelled to seek a professional diagnosis, do so for yourself and no one else.

 

[itsme]

Welcome to AC. From what you've posted, you've cited what I'd consider to be some pretty mainstream traits and behaviors of ASD. That said, I wouldn't rely on the logic of a formal diagnosis to validate yourself to Neurotypicals. Especially hostile ones who simply default to the notion that you MUST conform to THEIR sense of behavior rather than your own- autistic or not.

I'm self-diagnosed myself, having spend at least a year and a half now having stumbled onto my own mild case of autism. I've found this place to be a very valuable resource and hope you can as well. One thing I've concluded is that if I were to seek such a diagnosis, I would only consider a psychiatrist's evaluation who formally specializes in autism. And as also being uninsured, recognize how costly an out-of-pocket diagnosis might be. ($1500-2500K?)

In my case, in my late 50s I don't see any urgency towards getting such a diagnosis. As far as ever looking for work in a struggling economy, my biggest problem is inescapable. Age discrimination given the cost of group healthcare for people my age. No one wants to hire us with benefits. Nor do I see my being mildly autistic as any kind of real compensable disability. Seeking a formal diagnosis would likely only be for my own edification at best.

I've also concluded from reading so many posts here is that most everyone here is involved in a deep sense of discovery over their own perceived autism. That in most cases, those who thought they were on the spectrum went on to a formal diagnosis which confirmed their own suspicions and intuition. I'm certain that I'm on the spectrum, whether I ever get formally diagnosed or not.

If you do feel compelled to seek a professional diagnosis, do so for yourself and no one else.

Thanks, all this has been very helpful. I'd like to have a formal diagnosis for myself more than anything, mostly to confirm my own suspicions. I think it would also be helpful if I decided to tell my family. I appreciate the insight.

 

[Judge]

I think it would also be helpful if I decided to tell my family. I appreciate the insight.

When I finally mustered up the courage to tell my own brother, he totally got it. I was shocked! Equally when I told my cousin, she totally didn't.

To hear my own brother get it in a single long phone conversation was worth the risk of telling him. No better validation than from someone who has known you all of your life. Best of luck to whatever you decide...but there is a lot you can learn from right here.

 

[KassieMac]

Hello,

I am a 32yo male with a limited knowledge on Aspergers and don't really know where to begin. I'm looking for answers to several questions, but at the same time I'm not sure what questions I should be asking. I will do my best to explain, and maybe someone can help direct me or give me some guidance.

I have always had trouble making friends and have never been in a place where I feel as though I fit in. I've always described myself as a "social outcast", like one of the misfit toys from that old Rudolph the Red-Nosed Reindeer film. I feel like something about me is broken, but I don't know how to express or convey to others exactly what I mean by this.

I had heard of Aspergers before, but what really caught my attention was the NBC television show Parenthood. The character of Hank (portrayed by Ray Romano) in many ways felt like the character was based completely off me. I realize that the show is a work of fiction, but because of how relatable the character of Hank was, I looked into Aspergers a little deeper and on a more personal level.

I don't know how reliable the standard (?) Aspergers test is (referring to the 50 question AQ test) and I know that the fine print always states "not a tool for diagnosis" but I have scored between 36 and 44, depending on when I have taken it.

The results scare me somewhat, but not because I may have Aspergers but because if I don't, I worry I am just a broken, lonely, socially-awkward person frequently perceived as a "prick" because I can't relate to people.

I despise social situations, crowds, meetings with people and any changes to a comfortable, set routine. I rarely (if ever) do anything spontaneous because it makes me uncomfortable. I find people completely un-relatable and do not make or keep friends easily. I feel like most people avoid me because they can't relate to me, either, or think I am too odd.

I often become very invested in a topic or hobby, and when I try to express my interest with others they just don't understand or seem to care. I have never met anyone in my life who I feel I can relate to in terms or sharing my interests and hobbies with.

I've been accused of being "cold" or "not caring" but I find that a lot of the time it's because I'm completely unaware that anything was "wrong" in the first place. (For example, offending someone and literally not realizing that I offended them. Additionally, not being able to understand HOW they could be offended or WHY they are. This happens all the time.)

At the same time, I don't feel I have too difficult a time making eye contact with people or reading someone's emotions (two stereotypical signs of Aspergers). Eye contact is not always easy, but it's not something that I am incapable of.

I live in the U.S. and do not currently have access to affordable health care. I would like to know where to go to get a diagnosis or how to even begin that, even if I had to pay out of pocket.

Writing this is difficult and I don't know if I have expressed myself in any coherent way, but I have no one in my life that I can speak to about this and so I have turned to this forum. Thank you.

Hi itsme

I started a point-by-point reply to your initial post, but it got *really* long so I think I’ll turn it into a blog post. I’m female, but I can relate to much of what you stated. I’ve never watched Parenthood, my gateway was The Big Bang Theory. My cat (on her twitter account) described me as “wishes she was Penny, thinks she’s Leonard, but she’s really more like Sheldon” … insightful little furball.

The online tests all say I’m an Aspie, but when I asked my therapist or my doctor they blew me off. Now I’m unemployed due to workplace harassment, and I’ve finally got a doctor’s attention on the matter, but I’m on state-sponsored healthcare (Arizona) — it’s better than nothing, but they just refused my doctor’s request for a formal assessment. I’m kind of in the same boat.

I didn’t know where to start or whom to ask, so I asked everyone (at first). My therapist sent me to the Internet. My doctor sent me to my therapist. My therapist told me to attend a local support group. My doctor told me to get out & socialize more. For two years I asked every healthcare ‘professional’ I saw, and everyone pretty much said ‘go talk to someone else’ (without any specifics). I’ve come to the conclusion that most healthcare ‘professionals’ know nothing about Aspergers, and can’t be bothered to figure it out … but after much difficult work, I’ve finally gotten the attention of my therapist and she’s acting as an advocate for me.

I’ve been told that the assessment that the state just denied me runs about $1500, and that’s working with a NeuroPsychologist that specializes in Autism Spectrum Disorders. How I hooked up with her is a series of coincidences and a comedy of errors, so I won’t go into that here.

I’ve also often found people to be offended by things I say that really make no sense. It’s usually when I make a comment about something that is plainly obvious that I didn’t know was supposed to be a ‘secret’ … apparently the unwritten rules say that if I point out something obvious, I get blamed for it. Ummmm, no. If they don’t want anyone to comment, they need to be discreet. If it’s such a horribly offensive thing, then fix it instead of shooting the messenger. Playing those games has never gotten me anywhere, so now I just stick with being honest. Anyone who doesn’t like it probably wouldn’t make a very good friend anyway.

One last point (I did say this was the ‘short’ version, didn’t I?) … I don’t have much trouble with eye contact either, and I don’t feel like I have trouble reading emotions, but I do see things a little differently. When people try to hint at something without saying it I can tell, but I can’t tell what they’re hinting at. I just say “I can tell that you’re trying to say something, please just come out & tell me.” Also, when people are trying to portray a false emotion I find myself overpowered by the strength of their true feelings, so that the thin veneer of false friendliness just looks ridiculous & laughable to me. They claim that I can’t read their faces, because to admit otherwise would mean admitting to being condescending, passive-aggressive, manipulative, or whatever else. My guess is that because I’m honest and I don’t have a rapid-fire witty retort, they see me as naive … so when I show that I’m not they get hostile & aggressive.

All this to say, you’re not alone. And as I gather more information about getting an assessment I’ll let you know. Do you mind if I ask which state you’re in?

Best of luck to you,
Kassie

 

[KassieMac]

Thanks, everyone.

Any tips on how to go about getting a diagnosis without health insurance? I suppose I'll pay cash or out of pocket, I'm just not sure how to really go about it. Is it with a psychiatrist, and if so, should I seek a specific type? What's the best way to find a specialist? I live near Columbus, Ohio.

Additionally, how many meetings (approximately) might it take for a diagnosis? I ask not because I expect an immediate answer, but because doctors are expensive and I have to pay my own expenses.

Thank you.

Hi, me again!

What I understand from the neuropsychologist is that the assessment is a full-day evaluation, then there's a followup a couple of weeks later to review their findings. The $1500 I was quoted is supposed to cover both visits.

But one thing I've found is that there really isn't a standard (that anyone knows of). So anyone that has the credentials to make a diagnosis can (for example, a therapist/counselor wouldn't be qualified), but that doesn't mean that they will ... and the process of evaluation can (I guess) vary depending on the type of doctor it is. I know that's not very helpful, but I've been chasing this for two years now and that's what I've seen. Like I said, I'll pass on anything new that I learn. We'll get through this!

Kassie

 

[itsme]

Hi itsme

I started a point-by-point reply to your initial post, but it got *really* long so I think I’ll turn it into a blog post. I’m female, but I can relate to much of what you stated. I’ve never watched Parenthood, my gateway was The Big Bang Theory. My cat (on her twitter account) described me as “wishes she was Penny, thinks she’s Leonard, but she’s really more like Sheldon” … insightful little furball.

The online tests all say I’m an Aspie, but when I asked my therapist or my doctor they blew me off. Now I’m unemployed due to workplace harassment, and I’ve finally got a doctor’s attention on the matter, but I’m on state-sponsored healthcare (Arizona) — it’s better than nothing, but they just refused my doctor’s request for a formal assessment. I’m kind of in the same boat.

I didn’t know where to start or whom to ask, so I asked everyone (at first). My therapist sent me to the Internet. My doctor sent me to my therapist. My therapist told me to attend a local support group. My doctor told me to get out & socialize more. For two years I asked every healthcare ‘professional’ I saw, and everyone pretty much said ‘go talk to someone else’ (without any specifics). I’ve come to the conclusion that most healthcare ‘professionals’ know nothing about Aspergers, and can’t be bothered to figure it out … but after much difficult work, I’ve finally gotten the attention of my therapist and she’s acting as an advocate for me.

I’ve been told that the assessment that the state just denied me runs about $1500, and that’s working with a NeuroPsychologist that specializes in Autism Spectrum Disorders. How I hooked up with her is a series of coincidences and a comedy of errors, so I won’t go into that here.

I’ve also often found people to be offended by things I say that really make no sense. It’s usually when I make a comment about something that is plainly obvious that I didn’t know was supposed to be a ‘secret’ … apparently the unwritten rules say that if I point out something obvious, I get blamed for it. Ummmm, no. If they don’t want anyone to comment, they need to be discreet. If it’s such a horribly offensive thing, then fix it instead of shooting the messenger. Playing those games has never gotten me anywhere, so now I just stick with being honest. Anyone who doesn’t like it probably wouldn’t make a very good friend anyway.

One last point (I did say this was the ‘short’ version, didn’t I?) … I don’t have much trouble with eye contact either, and I don’t feel like I have trouble reading emotions, but I do see things a little differently. When people try to hint at something without saying it I can tell, but I can’t tell what they’re hinting at. I just say “I can tell that you’re trying to say something, please just come out & tell me.” Also, when people are trying to portray a false emotion I find myself overpowered by the strength of their true feelings, so that the thin veneer of false friendliness just looks ridiculous & laughable to me. They claim that I can’t read their faces, because to admit otherwise would mean admitting to being condescending, passive-aggressive, manipulative, or whatever else. My guess is that because I’m honest and I don’t have a rapid-fire witty retort, they see me as naive … so when I show that I’m not they get hostile & aggressive.

All this to say, you’re not alone. And as I gather more information about getting an assessment I’ll let you know. Do you mind if I ask which state you’re in?

Best of luck to you,
Kassie

Hello,

Thanks for your insight, it's helpful. I am in Ohio.

I've been reading more about Aspergers for 2 or 3 hours now. I actually lost track of time until your response made my email sound play. I am working on finding an affordable place to pursue a test, as well as working on procuring some insurance to help pay for it. Truthfully, if I had to pay, I would, as I would like to know.

I don't know how reliable the AQ Test is, nor the RDOS quiz but I scored 44 and 154, respectively. My research tonight has taught me that psychiatrists, etc. use the ADOS, but I'm not entirely sure what that entails. It seems one has to be a doctor with $50 to buy it, which I cannot do as I lack the medical qualifications. I'm not looking to cheat on the test, I'm just curious what it is and how it's different than the two I already took online. I *do* fear that I would fail it, and turn out to *not* have AS because of doing poorly on it or answering questions that would flag as non-AS (which would only make me question what is "wrong" with me if it's not AS).

I, too, have had several work-related issues because of situations where someone has been offended or upset by something I said or did. I actually resigned a position because I was not fitting into the mold there. I'm often told that I am "too sarcastic" and "condescending", even if I am genuinely not trying to be either at the time.

The more I read about AS, the more it "feels right" and seems to make sense. My biggest worry is not that I may have it, but if I get diagnosed as NOT having it then what is "wrong" with me?

 

[KassieMac]

I can relate, and I'm a little nervous about that myself ... but for me, the benefits outweigh the risks. I first started asking about Aspergers about 2 years ago. At the time I was employed, but I've always had difficulty with office politics. A room full of women sitting at desks can be more cruel than a grade-school playground! Unfortunately, when my therapist & my doc blew me off, I didn't press the matter and I kind of forgot about it. The work situation got worse, I kept reporting to management the harrassment & bullying (I was doing tech support by phone, and they actually screwed with the settings on my phone to make the customers complain about me) but management wouldn't take action. I asked for union representation ... they agreed to represent me, then turned on me in the middle of a meeting with management. If I'd had a formal diagnosis, I could've invoked the Americans with Disabilities Act to ask for reasonable accommodations -- though honestly, one shouldn't have to be 'disabled' to not be bullied at work -- and I would've had legal recourse had they still forced me out. I'm 45 ... too young to retire ... but I can't go back into another situation like that without some kind of legal protection. They didn't know I'm an Aspie, and I don't think they would've cared ... but I'm different and they're insecure & easily threatened, just like most bullies. And the management & union were so intimidated by these insecure bullies, so they just sat back & let them run the place. It's truly sickening.

Regarding if the doctors say you're not an Aspie ... well, I have my doubts about doctors. The first time I heard of Aspergers was that the son of a guy I was dating had been diagnosed as a child (he was 18 when we met) ... but he & I could not be more different. He (the son) doesn't seem to fit anything that I've read about Aspergers ... and honestly, that was one thing that held me back from investigating it. Bottom line, if you feel like you fit here, you're welcome here regardless of what the docs say ... and I'd be ok with that for myself if I didn't need the legal backup. Stick around!

Kassie

 

[Judge]

I can relate, and I'm a little nervous about that myself ... but for me, the benefits outweigh the risks. I first started asking about Aspergers about 2 years ago. At the time I was employed, but I've always had difficulty with office politics. A room full of women sitting at desks can be more cruel than a grade-school playground! Unfortunately, when my therapist & my doc blew me off, I didn't press the matter and I kind of forgot about it. The work situation got worse, I kept reporting to management the harrassment & bullying (I was doing tech support by phone, and they actually screwed with the settings on my phone to make the customers complain about me) but management wouldn't take action. I asked for union representation ... they agreed to represent me, then turned on me in the middle of a meeting with management. If I'd had a formal diagnosis, I could've invoked the Americans with Disabilities Act to ask for reasonable accommodations -- though honestly, one shouldn't have to be 'disabled' to not be bullied at work -- and I would've had legal recourse had they still forced me out. I'm 45 ... too young to retire ... but I can't go back into another situation like that without some kind of legal protection. They didn't know I'm an Aspie, and I don't think they would've cared ... but I'm different and they're insecure & easily threatened, just like most bullies. And the management & union were so intimidated by these insecure bullies, so they just sat back & let them run the place. It's truly sickening.Kassie

Yes, that's certainly serious incentive towards obtaining a formal diagnosis. Hope it all works out for you.

 

[Ste11aeres]

When I finally mustered up the courage to tell my own brother, he totally got it. I was shocked! Equally when I told my cousin, she totally didn't.

To hear my own brother get it in a single long phone conversation was worth the risk of telling him. No better validation than from someone who has known you all of your life. Best of luck to whatever you decide...but there is a lot you can learn from right here.

My brother didn't believe it right away, but with time he too came to "get it." Now, among the people in my life, he is one of those who understands Aspieness the best- impressive for a true Neurotypical!