Self-diagnosed Aspies

[epath13]

I've seen lots of self-diagnosed folks on the forum. I'm just curious. When and how have you decided that you might have Aspergers? And have you thought about getting an official diagnosis? And if you've already tried to get a diagnosis how did it go? Does anyone what to share their experience?
I've been diagnosed last year after seeing dozens of neurologists, after all the scans and pills and jokes and misunderstanding I finally got it. When doctor went through all the traits during the assessment I was shocked to find out that I had most of them. In childhood I wouldn't even think that rocking and staring blankly in space was abnormal, I thought everybody did it... at home that's why I didn't see them doing it anyway... reading so many messages from people who weren't diagnosed but still referring to themselves as people on the spectrum. I'm wondering when and why have you decided that it is the case?

 

[Rosalia]

Well, I'd always knew about my social issues, problems with very acute hearing, etc. My mom had always knew something was a little off about me, but it wasn't until 6th grade that we thought I had Autism. Asperger's fits me: social problems, acute senses, above average IQ (160). I'm not officially "diagnosed" because my parents think it's pointless: I'm too high-functioning to get drugs or whatever, it'll just be a burden on my education. So, I'm forever "self-diagnosed".

 

[Occasional_Demon]

I've only recently received my formal, official, signed-sealed-delivered DX courtesy of my psychiatrist, but before that, my therapist and my psychiatrist were locked in a wrangle about whether or not I was on the spectrum. Basically, she said yes, he said no. She wrote to him, "I think <my name> has undiagnosed Asperger's Syndrome", he ignored it for a while. Then he changed his mind, I guess because my other confirmed dx [schizoaffective disorder] has been asymptomatic for a while, but there were a lot of issues that were still happening and it was better described as Asperger's.

So, it took me a long time to get a DX. I had known since I was small that I was somewhat "different" from others. In 2005 I went nuts and was diagnosed with major depression and social anxiety, but I felt like there was something lacking in those descriptions. It felt like those diagnoses were descriptions of symptoms but they weren't dealing with the core issues - they felt superficial. So I wondered about ASD, read a bit, joined a forum and found that I could relate to a lot of what diagnosed Aspies were saying. However, it wasn't until 2009 when I started seriously seeking help that I thought I might raise it. I worked with my therapist for a while, I even paid for a private ASD assessment out of pocket myself [which said yes, you meet the criteria] but it still took a bit to convince my doctor. I used to think that I was never going to get any sort of agreement between my therapist and psychiatrist, but now apparently they agree.

I have to say though, I never called myself an "Aspie" until my therapist agreed with my self assessment. Until I started talking to my therapist about it, I might tell people that I "wasn't sure", but I didn't feel like I could own that label until a professional could assess me and give me their opinion. I think it's important for people to be formally assessed because you need a third-person perspective on issues like ASD and you don't get that examining yourself.

 

[Chihiro]

I do not believe in self diagnoses. I do believe that medical doctors can only diagnose those on the autism spectrum.

My own story is kinda sad.. When I was a kid, I used to play alone. Sometimes just stairing at the ceiling for hours. I was always alone.. My mother is not a very nice person. She used to call me "retard".. Well I'm not, My IQ is 140. Unfortunately, my mother is mentally ill and narcissistic, so she never supported me. I was taken to see shrinks and doctors and they told my mom her daughter could be autistic.. My mom, who used all kinds of drugs, when pregnant, just did not want to admit her daughter was "different", so she did not agree and took me to another doctor, to a better doctor (In her opinion).. Then she just stopped getting me help.. And I was left ..... ..Alone.

I went through puberty, thinking I'm retarded, as that is what my mom told me, all the time!! I was depressed and feeling sad, all the time. She called me a retard, even when I was reading books on astronomy, at age 12! You can understand why I do not talk to her anymore!

Now being +30years old I have contacted a psychiatric clinic to get therapy and a diagnosis, as 'this thing' that I have is killing me inside sometimes, well actually only, when I interact with other people. And when I get stressed and hit my own head, or get such panic attacs, I just can't even breath.. And when I can't even talk to other people and start to walk on my toes. Yeah, I do that. I've heard it is one of the symptoms of a/s. Stimming is also one of my things, this is one of those things that the docs saw in me, when I was a kid, visual stimming, kind of "zoning out".
So I won't call myself aspie, but Im pretty sure I'm on the spectrum. Since so many doctors already suspected it, when I was a child. When my diagnosis arrives, I'll tell you guys. And then it's time for coffee and cake

I do relate to people on the spectrum, but it is not always easy to communicate with autistic people. As I am not socially gifted, so I just feel this connection, when I meet AS people, but communication is not easy, even with them.. I like to write things, I know I'll be posting many posts on this forum as well :twitcy: Some of them can be reeeaaaalllyy long! Hee Hee!

 

[epath13]

@ Occasional_Demon
Yeah... I've been on therapy for 2,5 years and it didn't even cross her mind that I might have Aspergers. The psychiatrist who diagnosed me said that it's not unusual for girls and women to be misdiagnosed because symptoms tend to manifest themselves slightly differently. But recently I watched very interesting video about Autism spectrum disorders where psychiatrist (I believe he was a psychiatrist or maybe psychologist... don't remember) mentioned that it's not only about women but generally about people who are more creative, right brain people. Because usually Aspies are seen as typical left brain males, it is a common misconception, not all folks on the spectrum are like that.
I've been diagnosed with depression as well and Da Costa's syndrome. They gave me pain killers, sedatives, antidepressants. I felt like I was eating placebo, they had no effect whatsoever. Antidepressants did make me sleepy though or put me in, as I call it, funny mood Later on I realized it was not a depression it was sensory overload and all the other symptoms were caused by complicated migraine (as they call it nowadays) which is most likely a consequence of some sort of a temporal lobe dysfunction. I'm on Topomax right now and it's working. I couldn't believe that all the symptoms that I had almost every day could be fixed by just a few mg of that pill. There're side effects though so I'm not taking it every day but it's still working.
And actually I couldn't really believe that I was on the spectrum even after my son's doctor explained what Autism Spectrum Disorders were and I found symptoms very similar to mine. My husband was 100% sure and kept telling me that I was in denial. But during the assessment I was convinced. I think I knew it in my heart but tried to avoid the truth, not sure why though.

And I agree it is risky to put a label on yourself before a professorial assessment. I mean I do understand all those diagnoses are subjective to a certain point but still... I didn't say that I had Aspergers until I was officially diagnosed but it's people's right to call themselves any way they want. But I know I would have hard time doing that...

 

[epath13]

@Chihiro
Wow, that's really a sad story. I can imagine how tough it must have been for you. My mother in law was like that. I mean she is still like that. My husband hasn't been talking to her for about 8 years and I don't blame him. When people refuse to accept that they have mental illness, or that they behavior causes so much pain to others, there's nothing really you can do. Some people are more patient than others but at some point the abuse can become intolerable then you just have to let them go...

I can definitely relate to the communication part.

As for the meltdowns, for me they're not as severe anymore. Even though after any major sensory overload I still feel like I'm about to explode and that I need to release it somehow. Playing music and singing helps a lot but sometimes it's not enough. Meditation helps as well especially if practiced for prolonged period of time. It's not for everyone though... At this point I just try to keep moving, or sleep. My son's doctor said heavy work might help when you feel overloaded. I find snow shoveling very relaxing (just need to get though the "I'm tired I can't do it any more" barrier).

Anyway good luck with the diagnosis

 

[juffur]

When I first learned about Asperger's Syndrome I was reluctant to the idea that I may actually have it. However, eventually I started to research it, purchased a few books, and by the time I finished them I was more confident I at least have autistic traits if not a full blown spectrum disorder. I would love to be officially diagnosed, but as many of you probably know, it's not an easy thing to do in America (mostly because of the financial cost). Maybe my new university will be able to help with that though!

Just wanted to add one thing about being diagnosed. It's highly subjective and often biased depending on which professional is treating you. You can be diagnosed with AS by one, and an entirely different disorder by another. Professionals don't have a 100% accurate way to say you have asperger's syndrome. It's simply not possible at this time. The symptoms associated with spectrum disorders can be see in many other disorders, hence why professionals bounce back and forth between disorders before actually settling on a spectrum disorder. Sure the conglomerate of symptoms is what really seals the deal for a diagnoses, but even that can be explained away by having multiple disorders such as social phobia, ocd, personality disorders, which are not entirely uncommon for people to have.

I believe most people who "self" diagnose actually have autistic traits. Many so called neurotypicals have autistic traits as well. The real question is where do we draw the line for these traits and a disorder? How many are required to be considered a diagnosis? The criteria used in the DSM could just as easily be biased towards a professionals idea of what an autistic person should be (difficulty with people and such).

I think many people diagnosed with asperger's syndrome by a professional may not even have it, and many people who are undiagnosed may have it. It's just too subjective at this time. I don't believe that people should even worry about labels such as "aspie" or even be bothered that people use that label without a real diagnosis. Both may not have it, or both could have it, or one could have it, etc.

A professional diagnosis is not a golden seal of approval.

It seems many people often have to speak with multiple professionals about it before finding one who agrees that you have it. That in itself seems it's introducing bias. If you look long enough you are likely to find someone who will say yes. Given the subjective nature of diagnosing it, it doesn't guarantee you have it.

 

[epath13]

@juffur
Yeah, I agree with you. Even though diagnosis did make my life easier.
I was just thinking about my older son who was assessed by the same psychiatrist who diagnosed me but doc didn't see that many traits in him. it was predictable though considering that my son was directed during the assessment, we were in a quiet and organized room, I could say, he wasn't challenged enough for the traits to come out. They will most likely want to get him reassessed especially because 2 family members have been diagnosed, so he's like in a high risk group

As for diagnosis in US. Do you have any kind of medical insurance? In any case what state are you from? I'm from Illinois. It's not the best state support wise but Autism organizations do exist here. That's how I got diagnosed. I just went to a meeting held by my local Autism organization, talked to some folks there about my symptoms. They were very supportive and helped me with the assessment.

And when I talked to the psychiatrist we both agreed that it was a matter of perception and diagnosis was subjective but it could help to narrow certain issues down and find solutions that would be appropriate for that particular type of people.

 

[. . .]

When I first learned about Asperger's Syndrome I was reluctant to the idea that I may actually have it. However, eventually I started to research it, purchased a few books, and by the time I finished them I was more confident I at least have autistic traits if not a full blown spectrum disorder. I would love to be officially diagnosed, but as many of you probably know, it's not an easy thing to do in America (mostly because of the financial cost). Maybe my new university will be able to help with that though!

Just wanted to add one thing about being diagnosed. It's highly subjective and often biased depending on which professional is treating you. You can be diagnosed with AS by one, and an entirely different disorder by another. Professionals don't have a 100% accurate way to say you have asperger's syndrome. It's simply not possible at this time. The symptoms associated with spectrum disorders can be see in many other disorders, hence why professionals bounce back and forth between disorders before actually settling on a spectrum disorder. Sure the conglomerate of symptoms is what really seals the deal for a diagnoses, but even that can be explained away by having multiple disorders such as social phobia, ocd, personality disorders, which are not entirely uncommon for people to have.

I believe most people who "self" diagnose actually have autistic traits. Many so called neurotypicals have autistic traits as well. The real question is where do we draw the line for these traits and a disorder? How many are required to be considered a diagnosis? The criteria used in the DSM could just as easily be biased towards a professionals idea of what an autistic person should be (difficulty with people and such).

I think many people diagnosed with asperger's syndrome by a professional may not even have it, and many people who are undiagnosed may have it. It's just too subjective at this time. I don't believe that people should even worry about labels such as "aspie" or even be bothered that people use that label without a real diagnosis. Both may not have it, or both could have it, or one could have it, etc.

A professional diagnosis is not a golden seal of approval.

It seems many people often have to speak with multiple professionals about it before finding one who agrees that you have it. That in itself seems it's introducing bias. If you look long enough you are likely to find someone who will say yes. Given the subjective nature of diagnosing it, it doesn't guarantee you have it.

I pretty much agree with all of this.

Most "professionals" know less about Asperger's (and autism spectrum disorders in general) than any self-diagnosed person who's read a good book or two about autism spectrum disorders.

 

[142857]

Most "professionals" know less about Asperger's (and autism spectrum disorders in general) than any self-diagnosed person who's read a good book or two about autism spectrum disorders.

Well said!

Did aspergers syndrome suddenly spring into existence when professional diagnoses came into vogue within the past 20 years?

I was professionally assessed for mental retardation when I was 6 years old, to see if I belonged in a special school. I had developmental delays and I was obviously very different to the other kids. At that time - 1971 - nobody knew anything about high functioning autism. If it had been 2011 instead of 1971 I would probably have been diagnosed. Instead they simply concluded that I was above average intelligence and sent me back to regular school.

I've struggled to make a reasonably successful and happy life for myself despite many struggles along the way. I've done okay in some ways but it has been anything but easy. Self diagnosis has given me much peace of mind. Frankly at this point in my life it would make no difference whether a professional gave me a diagnosis of autism or neurotypicalism. I would still self-identify as autistic because it fits so well with my abilities and my struggles and with the way my mind works.

For those who say that a self diagnosed aspie is not a real aspie - did you become an aspie the day you were diagnosed? Were you NT the day before that?

 

[epath13]

Well said!

Did aspergers syndrome suddenly spring into existence when professional diagnoses came into vogue within the past 20 years?

I was professionally assessed for mental retardation when I was 6 years old, to see if I belonged in a special school. I had developmental delays and I was obviously very different to the other kids. At that time - 1971 - nobody knew anything about high functioning autism. If it had been 2011 instead of 1971 I would probably have been diagnosed. Instead they simply concluded that I was above average intelligence and sent me back to regular school.

I've struggled to make a reasonably successful and happy life for myself despite many struggles along the way. I've done okay in some ways but it has been anything but easy. Self diagnosis has given me much peace of mind. Frankly at this point in my life it would make no difference whether a professional gave me a diagnosis of autism or neurotypicalism. I would still self-identify as autistic because it fits so well with my abilities and my struggles and with the way my mind works.

For those who say that a self diagnosed aspie is not a real aspie - did you become an aspie the day you were diagnosed? Were you NT the day before that?

I haven't seen anyone here saying that "a self diagnosed aspie is not a real aspie" unless I've missed something ...

 

[Occasional_Demon]

Well, I for one am not saying that just because you haven't got the official dx doesn't mean you're not an Aspie, BUT I still stand by that you need a professional to assess you before you can run around calling yourself an Aspie. Someone earlier raised the fact that a lot of disorders share similar characteristics to ASD, and I think that's why you need to see a professional - so that they can help parse out whether or not you are on the spectrum, or if the issues are being caused by ASD.

Personally, it took me that long to get an ASD dx because of my schizoaffective, and schizoaffective symptoms - particularly the negative symptoms - can resemble ASD. With schizophrenia-spectrum disorders you can get issues with social withdrawal, lack of empathy, flat affect, etc. just to name a few. So, I've been at the point where people were quick to dismiss the ASD angle because of a co-morbid issue. At first I was puzzled and somewhat frustrated, but now, in hindsight, I understand why they took that long to assess me. They needed to make sure that my ASD-like symptoms were actually caused by ASD, and not by schizoaffective.

Also, while I think a person can have a lot of knowledge about something, it's different to being able to have an objective view of yourself. I think when you believe that you have <x>, you are going to view your experience in that light, whereas someone else who isn't imbued with a similar agenda would be able to view your experience in a more balanced light.

I think it's also easy to undervalue the knowledge that mental health professionals have about dxs. It is, after all, their job. They have to live and breathe the DSM, or the ICD-10, depending on where you live.

Anyways, those are my concerns about self-dxing.

 

[. . .]

BUT I still stand by that you need a professional to assess you before you can run around calling yourself an Aspie.

After seeing one too many incompetent "professionals" I personally have to disagree with this. Why should people refrain from saying they have an autism spectrum disorder if an incompetent doctor happened to test them? Most doctors know so little about Asperger's that they don't even know what type of disorder it is.

I may disagree with you but still think that people, if they feel it necessary, can see a professional to "confirm" their diagnosis to give them peace of mind. But if the professional happens to know little about autism spectrum disorders and diagnoses them as having something else, they shouldn't have to refrain from saying they have an autism spectrum disorder and certainly shouldn't rule out an autism spectrum disorder as being what they have. If a person is really, really sure that they have an ASD, they should say they have one. After all, no professional, even after going through extensive testing with a person, will be 100% sure if they have an autism spectrum disorder or not.

Most traits found in people on the spectrum, despite what some people think, are rather unique or more extreme than they are in other disorders. Luckily I pretty much have a textbook case of an autism spectrum disorder, so I never really needed a doctor to confirm what I have; however, I still went through with having a doctor "confirm" my ASD.

 

[jayraytee]

I do not believe in self diagnosis either. I suspected I had aspergers for a while and eventulally did get a diagnosis, but before that I just thought it was possible. The problem with self diagnosis is asperges and a few other disorders look similar. There is a lot of overlap, so there are ways the professionals can rule out the other issues and come to an official diagnosis which is pretty difficult for someone who has not had the same amount of schooling in this particular field. On other forums I have often seen people claim to be an 'aspie' because I think they want to be for some reason but when they tell about themselves it seems as though they probably have somthing else. I find these forums quite frustrating because a lot of the information is pretty sloppy.

 

[Occasional_Demon]

@Aillas: I guess that's why people can go and get second opinions and the like, if they really feel strongly that their current dxs, whatever they may be, isn't adequately covering all their issues.

Again, I can understand the frustration of going through the system. I've been there, done that. My former psychiatrist basically laughed me out the room when I said that my therapist thought I was on the spectrum. "You're too high functioning," he said, "and besides, girls rarely get Asperger's".

I felt that was wrong [you and I and possibly everyone on this forum can probably see the problems in his thinking] so a) I explored the concept with my therapist and b) I started seeing a new psychiatrist. Even then though, I never said definitively that I was an Aspie until my current psychiatrist agreed, simply because I wasn't 100% sure.

I agree that the cluster of symptoms present in ASD can be unique, but it's the fact that some of these symptoms are also present in multiple other dxs that causes the problem for self diagnosis. I don't have a problem with people reading up on ASD, and doing the various tests that are around online, because the concept of Asperger's is a relatively new one and therefore there are potentially lots of adults who have missed out on a early dx, but it is next to impossible to gauge your own experiences in accordance to the DSM/ICD-10. Someone else needs to look at your history as well.

I really think that a lot of the misunderstandings that the general public have about ASD is due to people self-diagnosing, when there's a likelihood that their judgement is wrong and they aren't on the spectrum in the first place.

 

[Spinning Compass]

Well, there may be people who read a book or two and then jump to conclusions that they have this or that, but I am going to go out on a limb here and say that probably most of us (especially us older people) who are self-diagnosed have very good reasons to believe that they have Aspergers or are on the spectrum, because why would you knowingly choose to be on the spectrum if you were not?

In my case, if you look at the history of my behavior as a child, the fact that I was put into special education, the fact that I was dragged to doctors and therapists who didn't use the word Aspergers or autism but did agree that I had SOME kind of perceptual disorder, the fact that I have had a lifetime of social problems relating to this disorder, but once I reached a certain age I was considered "cured" and therefore my problem whatever it was was not to be talked about, just swept under the rug, I think that I have very good reason to think that I have Aspergers. It is the only answer that makes sense.

Now, as to diagnosis. What qualifies as a diagnosis? If my primary care physician says in her opinion I have Aspergers but hide it very very well, is that good enough, or shall I seek out further diagnosis? Do those people who say that unless a doctor says so you don't have it, have any idea of the cost behind seeking a diagnosis? I know someone whose son was recently diagnosed with Aspergers. He is a teen. To get this diagnosis they had to spend SEVERAL THOUSAND DOLLARS (not all covered by insurance) and make numerous trips to a city at least an hour's drive away. They were lucky that they did not have to travel farther.

Now, take into consideration that many of us are not so lucky, we may not have jobs, we may not have access to transportation and we may not have insurance to cover diagnosis. What are we to do? Also take into consideration that in many places Aspergers and related disorders are still very much stigmatized and an official diagnosis may hurt someone's chances in the job market. I do not have an "official" diagnosis; should I get one, what would happen to me? Even though it is "illegal" to discriminate against someone because of Aspergers, it still happens. If I got a diagnosis, and it went down on my records, and there was another layoff at my place of employment, would my name be on the list of people to eliminate?

I am not against people getting diagnosed; in fact, I greatly encourage it. But it is not as simple a thing as people think.

 

[142857]

Well I was at dinner 2 nights ago. The bill came, it was 368 between 7 people and it took me about a second to calculate that it came to $52.571428 each. One lady of our party - who I had never met before that night - told me that I have aspergers. Admittedly she wasn't a doctor or anything like that. But at least I am not just self-diagnosed now.

I'm not a self-diagnosed aspie anyway. I'm self-diagnosed autistic. I had significant delays in developing speech as a young child. I am pretty much a textbook case of HFA, with some of the less common stereotypes thrown in.

I don't go around telling people that I am an aspie/autistic. I don't ask for special accommodations. I don't want to claim welfare or any other benefits. So what is the problem?

I go on aspie websites because I often find like-minded people who have similar life experiences and outlooks to mine. So what is the problem?

 

[jayraytee]

All of those are legitimate, the problem with self diagnosis, especially with aspergers is that there are several disorders that can look the same. Or you could possibly have two or three disorders that overlap and the result could look like aspergers. A trained expert can ask enough questions and observe enough traits to rule out the other disorders, where a friend, physician or a lay person just doesn't have that same knowledge because they have not studied all of the disorders like a trained expert has. A proper diagnosis, if it can be attained, is good because treatment can differ depending on what disorder or disorders a person has. Another issue is that autism and aspergers syndrome has gotten a lot more attention, with movies and tv shows highlighting them. So its easier for a person to see them and immediately suspect them, where a lot of other disorders just don't have the same level of coverage.

 

[inflammablefish]

what if you're a professional who works with people on the spectrum all day long? would you say you could accurately self-diagnose yourself then?

 

[Geordie]

My intuitive answer would be DSM-IV, but then, even diagnosis conditions can be a call for us to make