Hello, and help needed

[XAND]

Hello AS/HFA friends

I hope to get to know you. Here is some background: I am 34 years old and have battled most of those years with what I assume is an ASD. I enjoy talking to people almost exclusively via text; although I am married and have two daughters and a large extended family that I care about very much, I maintain zero friends in person, and have lost all but one of my long-distance friends due to atrophy or misunderstanding or a combination of both. I cannot process, much less enjoy, small talk—I prefer intimacy. I am not humorless, but solemnity is always preferred. I enjoy sad movies because those feelings have some appreciable weight. I am not unkind, but I am wholly alien. There is a horrible dichotomy between the intense feelings of isolation/abandonment and, on the other hand, the need for solitude that many of you must be familiar with. I want to connect.

Here are my AS test scores for some perspective:

RAADS-R: 198.0 (average ASD male 147.5, average NT 81.9)
AQ: 42 (Average score 16, autism threshhold 32)
Aspie-quiz: Aspie 171 of 200, NT 42 of 200

The RAADS-R and Aspie-quiz are new to me, but I've taken the AQ every year for the past 7 years or so and consistently scored anywhere north of 38. IQ is 130-145 depending on the area tested.

I NEED YOUR HELP. I am looking to connect with persons who have some understanding. I have seen 3 medical professionals regarding the AS assumption; a general practitioner, a psychiatrist, and a neurospychologist. The first was in some agreement, the other two were not entirely, and suggested other disorders to focus on. The psychiatrist ruled out AS because I claimed a need to connect to others. With all due respect, I think he misinterpreted.

I am convinced that I have AS, and would be much relieved to acquire that diagnosis (not one single NT person has understood this, even after explanation) but I am frustrated and discouraged that the professionals seem to think otherwise. It is incredibly important to me to acquire either a diagnosis on the autism spectrum, or be diagnosed with something I've never heard of that accounts for at least the bulk of my symptoms. This is so important to me right now that I will not be satisfied with the typical, tired refrain "a diagnosis shouldn't matter"; that's NT-speak. I really need to connect with someone that understands; it is paramount that I am diagnosed and then I can move forward with managing the more difficult aspects.

Primarily, I would like to know if it is not unheard-of for fellow ASD people to have been misdiagnosed prior to becoming official, or if it is common to encounter other obstacles on the path to diagnosis.

I am also somewhat interested in whether or not self-diagnosis is stigmatized in the greater Aspie community. If my efforts are fruitless and I'm relegated to self-diagnosis, how are the self-diagnosed treated in your communities?

I have been diagnosed with, treated for, or suspected by my physicians to have: Social Anxiety Disorder or "Social Phobia", Major Depressive Disorder, Seasonal Affective Disorder (now "Major Depressive Disorder With Seasonal Pattern"), Obsessive-Compulsive Disorder, Obsessive-Compulsive Personality Disorder (separate from OCD), General Anxiety Disorder, and at least some symptoms of Attention Deficit Disorder, and very likely Post Traumatic Stress Disorder after a specific event in my teenage years.

I very strongly believe (as I've heard it's not uncommon for ASD to coincide with a number of comorbid disorders) that the incredible list above makes a huge amount of sense in the context of autism and approximately none sense otherwise.

Please, if you can, offer some encouragement. If nothing else, it would mean a lot to have a sense of belonging at last.

My illustration, poetry, and some photography collecting dust: frail (jesse michael renaud) on deviantART

 

[Vanilla]

Welcome

Being self diagnosed isn't taboo, in fact it's rather common. It's believed that Aspies can spot one another better than most professionals at the moment, though this is probably due to the fact the AS is still not so commonly known about by the general public, but it's getting better.

If you feel you have AS, try reading through a few posts here, see whether you can relate with the stories; most of us with AS feel that reading the posts on here is almost like reading out of your own diary, it's quite bizarre. If it feels right, I'd look for a specialist who actually specialises in Aspergers. Hope that helps.

 

[Ereth]

Hi there!

Misdiagnosis can also happen, so no, it's not unheard of. I think we have some members here who were initially misdiagnosed.

Oh, and the idea that the psychiatrist has about people with AS not wanting to connect with others is complete crap. I think, overall, that while we may be distant from most people and wary of socializing, we do want to have interactions with a select few.

 

[Turk]

Hi Xand,
Im a self diagnosed Aspie, although a number of my family members are officially diagnosed , so it wasn't much of a stretch. The kind members of this site, have made me feel welcome, regardless. I do know a few who were misdiagnosed, to start with. Especially those with multiple disorders. They can mask Aspergers, to a degree, depending on the condition. Although there are specific traits to Aspergers suffers, there are exceptions, to the rules. Just because you dont fit in your specialists box, doesn't really mean anything. As for friendships, I think what Ereth said, in the previous thread, sums it up pretty well.
Cheer
Turk

 

[XAND]

Welcome

Being self diagnosed isn't taboo, in fact it's rather common. It's believed that Aspies can spot one another better than most professionals at the moment, though this is probably due to the fact the AS is still not so commonly known about by the general public, but it's getting better.

If you feel you have AS, try reading through a few posts here, see whether you can relate with the stories; most of us with AS feel that reading the posts on here is almost like reading out of your own diary, it's quite bizarre. If it feels right, I'd look for a specialist who actually specialises in Aspergers. Hope that helps.

It does help, and I appreciate your kindness. I have been reading through the posts here for a few days now, but I was convinced enough as far back as 2007. The recent reading-out-of-your-own-diary moment for me was Tony Attwood's "The Complete Guide To Asperger's Syndrome". I devoured that book already knowing that AS was the best explanation, but it still blew my mind. I highlighted well over 200 passages that struck a chord. I'd be interested to know what your personal experience was, diagnosed or otherwise.

 

[XAND]

Hi there!

Misdiagnosis can also happen, so no, it's not unheard of. I think we have some members here who were initially misdiagnosed.

Oh, and the idea that the psychiatrist has about people with AS not wanting to connect with others is complete crap. I think, overall, that while we may be distant from most people and wary of socializing, we do want to have interactions with a select few.

Yeah, I thought so. Again, there's OCD and OCPD comorbidity, which could account for my peculiar need to connect, but even if it was just a special interest (of which I have many—and intensely), I would think that alone could account for it.

Thanks for the solidarity. I mostly just feel like the professionals are ignoring the elephant in the room, but it's good to be reminded they are also only human.

 

[XAND]

Hi Xand,
Im a self diagnosed Aspie, although a number of my family members are officially diagnosed , so it wasn't much of a stretch. The kind members of this site, have made me feel welcome, regardless. I do know a few who were misdiagnosed, to start with. Especially those with multiple disorders. They can mask Aspergers, to a degree, depending on the condition. Although there are specific traits to Aspergers suffers, there are exceptions, to the rules. Just because you dont fit in your specialists box, doesn't really mean anything. As for friendships, I think what Ereth said, in the previous thread, sums it up pretty well.
Cheer
Turk

You know, looking back on it, it was a scenario where the neuropsychologist was concerned with the social phobia enough that even if he believed I had AS, it wouldn't have been his priority in terms of treatment. And again with the psychiatrist; more concerned about OCD/OCPD. And the first doctor whose primary focus was my depression and anxiety. Much to consider.

Thanks for the perspective, and the vote of confidence toward self-diagnosis.

 

[Ereth]

Yeah, I thought so. Again, there's OCD and OCPD comorbidity, which could account for my peculiar need to connect, but even if it was just a special interest (of which I have many—and intensely), I would think that alone could account for it.

Thanks for the solidarity. I mostly just feel like the professionals are ignoring the elephant in the room, but it's good to be reminded they are also only human.

No problem. I'm fortunate that my psychologist, whom I see for other reasons, is aware of ASD. She encouraged me to find a specialist, who diagnosed me.

 

[MoCoffee]

First of all, I'm glad you found us. As you've already seen, the people here are very supportive and accepting of their fellow Aspies whether officially diagnosed or not. I too have been diagnosed with Social Anxiety Disorder among other things, and my official AS diagnosis only happened a few months ago. I was like you, the various conditions I have really only make sense when you look at them in conjunction with Asperger's.

 

[XAND]

First of all, I'm glad you found us. As you've already seen, the people here are very supportive and accepting of their fellow Aspies whether officially diagnosed or not. I too have been diagnosed with Social Anxiety Disorder among other things, and my official AS diagnosis only happened a few months ago. I was like you, the various conditions I have really only make sense when you look at them in conjunction with Asperger's.

Thanks, that's good to know. Did you run into any trouble with the AS diagnosis?

 

[Flinty]

Hey XAND...

Back in 1999 I was diagnosed with a mild case of schizophrenia. At the start of 2012 I asked my shrink if I had ASD instead. His response: probably, but it doesn't matter that much.

 

[Vanilla]

It does help, and I appreciate your kindness. I have been reading through the posts here for a few days now, but I was convinced enough as far back as 2007. The recent reading-out-of-your-own-diary moment for me was Tony Attwood's "The Complete Guide To Asperger's Syndrome". I devoured that book already knowing that AS was the best explanation, but it still blew my mind. I highlighted well over 200 passages that struck a chord. I'd be interested to know what your personal experience was, diagnosed or otherwise.

You know it's funny you should mention Tony Attwood.

At the moment I'm self-diagnosed, and my first attempt to share my gut feeling with a specialist didn't go well; they told me I wasn't 'odd' enough to have Aspergers. I'm thinking I fall under the category of hiding it too well. He then advised he could be wrong, and told me if I wanted to be absolutely sure, I should see the best. He advised I should see Tony Attwood, who runs a clinic about 1 hr drive north from where I live now. He also has a second clinic, around the corner from where I live, but is only there one day a week. Only problem is, he isn't taking new clients at all, at either one. At the moment I'm on his cancellation list though, which seems to be my foot in the door with seeing him for now. If someone cancels, I might be able to take their spot, just for that day.

I've also been told to speak with a psychotherapist; while she can't diagnose officially, she too has Aspergers, so I am interested to hear her thoughts. Extra bonus...she's good friends with Tony.

 

[nowwhat]

Hello AS/HFA friends

I hope to get to know you. Here is some background: I am 34 years old and have battled most of those years with what I assume is an ASD. I enjoy talking to people almost exclusively via text; although I am married and have two daughters and a large extended family that I care about very much, I maintain zero friends in person, and have lost all but one of my long-distance friends due to atrophy or misunderstanding or a combination of both. I cannot process, much less enjoy, small talk—I prefer intimacy. I am not humorless, but solemnity is always preferred. I enjoy sad movies because those feelings have some appreciable weight. I am not unkind, but I am wholly alien. There is a horrible dichotomy between the intense feelings of isolation/abandonment and, on the other hand, the need for solitude that many of you must be familiar with. I want to connect.

One thing I can tell you: Almost every bit of that, I could have written myself. Odd to come here and find people so like me, while out in the real world I feel like another species. Welcome.

 

[XAND]

Hey XAND...

Back in 1999 I was diagnosed with a mild case of schizophrenia. At the start of 2012 I asked my shrink if I had ASD instead. His response: probably, but it doesn't matter that much.

What's your take on it? Does it matter?

 

[XAND]

He advised I should see Tony Attwood, who runs a clinic about 1 hr drive north from where I live now.

Incredible. Maybe put in a good word for me, if you get some face time with him. I am not above having imagined seeking his counsel in person throughout the course of that book and after, but I am on the other side of the planet, so there is no chance.

In the meantime it seems that you are confident in your self-understanding even outside a diagnosis, and that is encouraging to me. Good luck!

 

[XAND]

One thing I can tell you: Almost every bit of that, I could have written myself. Odd to come here and find people so like me, while out in the real world I feel like another species. Welcome.

I am really glad to hear that. I have not much experience with connecting with other aspies and the default assumption seems to be there is some general emotional cauterization and lack of interest in friendships. That certainly may be true of many aspies, but it is good to be able to see otherwise.

The buzz about 'wrong planet syndrome' I found interesting, but the more I wrestled with it, the more this thought came out on top:

There is nothing wrong with the planet, only its inhabitants.

Maybe you feel like this too, and I talk about alienation, but I really feel like all the other [NT] people are aliens in my world. I mean, the natural world makes sense to me, physics makes sense to me, I make sense to me—but the rest? Like Radiohead says, "all these weird creatures who lock up their spirits..."

Anyway, well-met. Thanks for the solidarity.

 

[Flinty]

What's your take on it? Does it matter?

It matters because it's best for one to know oneself. The shrink is more conservative and thinks that kind of stuff is total BS.

 

[XAND]

It matters because it's best for one to know oneself. The shrink is more conservative and thinks that kind of stuff is total BS.

Thanks. That is the approach I would take (obviously, because of this thread in the first place). I definitely wish there were more docs that understood it isn't BS at all.