The truth about Aspergers?

[Gracey]

. I guess that reinforces why so many women are going undiagnosed or misdiagnosed.

If we're NOT presenting in a way that matches any knowledge or experience that specific doctor has to date on the condition and we describe symptoms that the doctor recognises as mental illness, we're going to be placed in the mentally ill category and medicated.

I'm pleased you got your doctor to actually listen to what you're saying to him and have a longer consultation and possible referral.

 

[Fitzo]

Found a more detailed one that might be more worthy of being printed: Girls with autism are getting a rougher deal than boys because our assessments are so male-centred

Yes great article Katleya! Thanks again.
The problem I'll have now is getting him to actually take the time to read all this stuff!

 

[Katleya]

He might respond better to an introduction, such as stating there is now documented evidence that women are underdiagnosed, leading to sometimes severe mental health issues, and initiatives to push for further studies on the issue. Then you have the articles ready if he wishes to find out more about it.
I might also add that the ratio most doctors have in mind was decided on 24 years ago, and I would ask him: what if we used data and technology that's a quarter century old to treat everything from cancer to bacterial infections? Is medicine supposed to be set in stone, never evolving, never making new discoveries? That would go against the very purpose of research, wouldn't it? (As you might have guessed, I can have an argumentative streak... I just don't take lack of knowledge or logic for an answer, but sometimes people respond better than expected to those debate-y challenges)

 

[Fitzo]

He might respond better to an introduction, such as stating there is now documented evidence that women are underdiagnosed, leading to sometimes severe mental health issues, and initiatives to push for further studies on the issue. Then you have the articles ready if he wishes to find out more about it.

I might also add that the ratio most doctors have in mind was decided on 24 years ago, and I would ask him: what if we used data and technology that's a quarter century old to treat everything from cancer to bacterial infections? Is medicine supposed to be set in stone, never evolving, never making new discoveries? That would go against the very purpose of research, wouldn't it? (As you might have guessed, I can have an argumentative streak... I just don't take lack of knowledge or logic for an answer, but sometimes people respond better than expected to those debate-y challenges)

Yes I completely agree. I have already been rehearsing what I am going to say along those lines for some days now.

As with most situations I have to face where I am questioning someone's expertise, I am concerned I will just be seen as combative.....so they won't really hear what I'm saying because I've ruffled their feathers. As you can no doubt deduce from what I've just said, I've been down this road many times before! Diplomacy is definitely NOT my strong suit. Particularly if I'm emotional.

You may know of Prof Tony Attwood? He's recognised as one of the world's leading experts on Aspergers and although he's originally a Brit he lives here in Australia. In fact he's on an ABC doco here tonight! I couldn't believe the timing! Synchronicity at work! Anyway, he believes the ratio is more like 2:1 male to female, and he said this in 2009! He isn't taking new patients so it's unlikely I could ever get to see him, but he works with others whom I probably could see..... if I can get past the current roadblock.

Originally I wasn't hellbent on getting a diagnosis, but NOW I'm determined!
From what you've said I suspect you and I are very alike

 

[Reedstorm17]

Had a little fun with this today...

 

[watersprite]

Ha! I was going to suggest this very thing, and here it is. Well done @Reedstorm17 .

 

[Jason T]

I didn't have to read any further than this line; "They are incapable of empathy." To know where this was going, this is patently false. But I would say she was less than empathetic to the needs of her spouse or frankly anyone on the spectrum. NTs often think those on the spectrum are incapable of empathy because emotion is not felt or expressed in the same ways between the two groups. It's like saying someone from Japan is incapable of speaking because I don't understand the language. I didn't see any contact information for that website by the way.

 

[NShoreEndo]

I'd love to share this example of our lack of empathy with her:
My teenage son, who has had the AS diagnosis since age 8, last year was invited to be part of a wonderful mentoring program through Boston Medical Center - basically older Aspie kids hanging out with younger ones, many of whom had just been diagnosed. They planned monthly social events.

At the first event, which was a structured "meet and greet," there was an 11-year old boy who became overwhelmed and ran out of the room. A few of the adult directors tried cajoling him to come back, but he just sat in the hall with his head buried in his lap.

Since the directors were getting nowhere, my son volunteered to talk to him. Three minutes later, they both came back and rejoined the activities. One director asked my son what he did, and he said, "I told him that I know what it feels like to be surrounded by strangers and overwhelmed, and it was ok to feel that way, but no one was going to judge him for that, and I'd be happy to help."

I think that those of us with AS are way better equipped to show true empathy, because we are less capable of faking it.

 

[Amy Susan Rose]

After reading the line, "They are incapable of empathy. And because of their lack of empathy, their spouses, partners and children suffer extreme emotional neglect, abuse and significant trauma," I knew this dreadful person was on a personal mission to destroy anyone on the Spectrum due to her inability to show any sort of empathy or intellectual understanding of those of us on the Spectrum.

I stopped reading it because I knew she definitely has issues but then out of morbid curiosity went back and read the entire article and about lost it when I read the quote at the end: "One doesn't have to operate with great malice to do great harm. The absence of empathy and understanding are sufficient." Ironically, I would use this quote to describe the author.

Anyway, I sufficiently recovered and found a couple of informative and for me, enlightening articles which hopefully some will read. The following article supports those of us on the Spectrum who are actually oversensitive to other's emotions and may lead some of you to further research regarding Empaths. I believe, we are different than NT's, not just neurologically but spiritually.

Perhaps I should have started a new thread regarding Empaths but I think this certainly ties into the distorted, unfair and inaccurate article that is the subject of this thread. Theory finds that individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much and Ethereal Aspie: Aspie Empath

 

[Reedstorm17]

I can remember a time was I was maybe four years old where I thought something along the lines of my perspective being the only one. It's hard to explain. I remember being confused at why I could see everyone else, yet I couldn't see myself. I think I had the idea that everyone else could see themselves the way I saw them, but it didn't make sense to me. I figured out quickly enough that everyone saw things from first person just like me. That they could fully see me. It kind of blew my mind. But I almost forgot I used to think this way, until I read this article. Then it just came back.

 

[Tia_Vali]

I just went and looked at the website this "article" comes from. It's not really so much an article as it is a blog rant. (Everybody and their DOG has a blog nowadays so they can publicly aire their grievances, but they will tell you that YOU had better not do so because, if you do, you're a politically incorrect hater. <eye-rolling>). If you read her "About This Website" page, it quickly becomes evident that she (the site owner/creator) is bitter over a relationship she had with a man with Asperger's and also over a friendship she had with a woman with Asperger's. It sounds like the whole purpose of her website is, essentially, to "get back at" (take revenge against) those people and anyone else like them.

If you ask me, SHE has AT LEAST as many issues as anyone with Asperger's. She couldn't just learn from her experience that maybe, for her, having a friendship or a relationship with someone who has Asperger's is more than she can, or wants to, handle and then just move forward in her life and try again. She feels the need to set up an entire website with the purpose of trashing those with Asperger's and spreading opinion-laden, inaccurate information that leans decidedly to the negative. She can't just let go of her past experience and learn to move on. Neither of her former Asperger's friends is forcing her to stay stuck in her negative attitude. It sounds like they're not even in her life any more. So, whose fault is it REALLY that she is still angry and bitter?

She is also promoting the idea that, if someone is having difficulty in any kind of relationship, they should self-assess the other person for Asperger's. That's essentially giving people an excuse (or rationalization) for why the relationship isn't working or didn't work. This reminds me of how I've heard a lot of guys casually mention "Oh, my ex was bipolar", but then you find out the reason they're saying that is to rationalize why SHE was really the one with the problem because she would scream and yell and cry when she found out he was cheating on her. So ... self diagnose the ex to rationalize your own bad behavior. This follows the tendency in today's society to find some kind of blame to place on others in order to avoid taking any responsibility for one's own actions, choices, or role in a situation.

I don't see a whole lot of credibility in what she writes or in the website, in general, given her particular motivation. I think you mentioned the word jerk? Yeah, that might be best applied to that writer/website owner. I wouldn't let the stuff she's spewing get you too depressed.

 

[Katleya]

Yes I completely agree. I have already been rehearsing what I am going to say along those lines for some days now.

As with most situations I have to face where I am questioning someone's expertise, I am concerned I will just be seen as combative.....so they won't really hear what I'm saying because I've ruffled their feathers. As you can no doubt deduce from what I've just said, I've been down this road many times before! Diplomacy is definitely NOT my strong suit. Particularly if I'm emotional.

You may know of Prof Tony Attwood? He's recognised as one of the world's leading experts on Aspergers and although he's originally a Brit he lives here in Australia. In fact he's on an ABC doco here tonight! I couldn't believe the timing! Synchronicity at work! Anyway, he believes the ratio is more like 2:1 male to female, and he said this in 2009! He isn't taking new patients so it's unlikely I could ever get to see him, but he works with others whom I probably could see..... if I can get past the current roadblock.

Originally I wasn't hellbent on getting a diagnosis, but NOW I'm determined!
From what you've said I suspect you and I are very alike

It's really like walking on a tightrope, trying to find the right balance of diplomacy and firmness regarding the points you have to make to be taken seriously by a doctor who isn't as aware of the condition, yet still supposedly has more authority in the field than you would. And luck comes in the mix, too: meeting a doctor who happens to be a person intelligent enough to understand that they may not know everything, and that some patients actually have the answer key is often a matter of luck.

As for Pr. Attwood, yes, of course. How was the documentary? I doubt that I can find it outside of Australia, but who knows? People post the most unlikely things on Youtube, sometimes...

I hope you manage to get a referral, Fitzo. (and yes, we're probably very much alike )

 

[Fitzo]

It's really like walking on a tightrope, trying to find the right balance of diplomacy and firmness regarding the points you have to make to be taken seriously by a doctor who isn't as aware of the condition, yet still supposedly has more authority in the field than you would. And luck comes in the mix, too: meeting a doctor who happens to be a person intelligent enough to understand that they may not know everything, and that some patients actually have the answer key is often a matter of luck.

As for Pr. Attwood, yes, of course. How was the documentary? I doubt that I can find it outside of Australia, but who knows? People post the most unlikely things on Youtube, sometimes...

I hope you manage to get a referral, Fitzo. (and yes, we're probably very much alike )

I saw my doctor again yesterday and I think I managed to convey most of what I wanted to, even though I probably got a little more emotional than I would have liked. He kept the two articles you pointed me to and said he would read them. Being a Brit he knew that they were both very credible sources.
He is actually a nice guy and I think a good GP and he took it on the chin when I told him ( with all due respect) that he was out of his depth in this area. He apologized profusely for upsetting me and I doubt he'll react the same way the next time ( and there will be a next time ) he encounters someone who presents with AS. In saying that I'm sure that he still believes I don't have it and that this will be the conclusion the psychologist comes to. I have a referral to see a psychologist I've seen previously, but he knows that ultimately I want to see Prof Atwood or an associate. We'll see how it goes! I'm not sure telling him I don't THINK I have AS, I KNOW I have it really helped my cause. I probably came across as a a bit too zealous.
The doco was quite good but was focused as much on Attwood's family as on AS itself. The fact that he failed to pick up that his own son has AS. However Attwood's very positive view of ASD came across well and will hopefully resonate with the wider community. I personally didn't really learn anything I didn't already know.
There is a lot of rubbish on YouTube, but there is also quite a lot of useful stuff and personal accounts by people on the spectrum. I found it useful anyway

 

[Katleya]

Glad that I could be of help!
From what you described, he seems like he isn't overly blindfolded, so who knows? Maybe you'll have a good surprise with him.
As for the psychologist, I guess this is the one person you need to see with a prepared case. The way I see it, it would be what makes you think you have it (signs that you show), what signs you do not have, and if you have a history of other diagnoses, what mark these have missed (I, for one, was labeled with a bunch of mental illnesses and because the diagnoses were all wrong, not only did the prescriptions not work, they made things worse).

 

[Fitzo]

Glad that I could be of help!
From what you described, he seems like he isn't overly blindfolded, so who knows? Maybe you'll have a good surprise with him.
As for the psychologist, I guess this is the one person you need to see with a prepared case. The way I see it, it would be what makes you think you have it (signs that you show), what signs you do not have, and if you have a history of other diagnoses, what mark these have missed (I, for one, was labeled with a bunch of mental illnesses and because the diagnoses were all wrong, not only did the prescriptions not work, they made things worse).

The psych is someone I have seen before and is therefore somewhat familiar with my history, although not in the context of AS. I originally went to see her in regard to my lifelong struggles with my mother. She was the first psych to ever suggest my mother most likely has NPD. When I went home and started searching for info it was another one of those lightbulb moments....... much like discovering AS.
But I do remember telling her things like feeling different to other people........ square peg in a round hole etc. It will be interesting to find out if it ever crossed her mind at that time. I do remember her saying things like 'but you've been very high functioning' and I agreed but said that it had nevertheless been a struggle. If she knows her stuff, that should have been a red flag for her don't you think?
Anyway, I have got the results of two questionnaires which both came back as ' fairly prominent symptoms' for both autism and Aspergers. I also have two other lists of symptoms for females with Aspergers which I tick almost every box. Any psych worth their salt would surely not dismiss that out of hand I would hope.
Anyway time will tell.
Which reminds me I left her a phone message requesting an appointment yesterday and she still hasn't responded! Not a promising start

 

[Karen S.]

I didn't have to read any further than this line; "They are incapable of empathy." To know where this was going, this is patently false. But I would say she was less than empathetic to the needs of her spouse or frankly anyone on the spectrum. NTs often think those on the spectrum are incapable of empathy because emotion is not felt or expressed in the same ways between the two groups. It's like saying someone from Japan is incapable of speaking because I don't understand the language. I didn't see any contact information for that website by the way.

Yeah, she's not accepting "any disagreements"! LOL!

 

[megacomic]

Many NT's tend to vilify what they don't understand rather than research it. The myth that we lack empathy has been thoroughly discredited. It's always the same thing with these people "My husband ignores me. I think he has Aspergers." or "This person is a jerk to me so they must be on the spectrum". Because anyone who doesn't do what you want clearly has a disorder. Many father's I know that are on the spectrum are very involved in thier children's lives. Sometimes too much. We actually had to tell one father that he didn't need to come on every field trip.

 

[dragoncat16]

That site is nothing more than hate speech, and it isn't even accurate. I cannot believe she is describing people with AS. I think she is actually describing psychopaths/sociopaths. I have spent way more time in my life being a bullying vicitim (with NTs and psychopaths as the bullies) than a bully myself. In fact, I don't think I have ever bullied anyone, unless you can actually make another person suffer by creating an awkward situation by not following all the myriad of unwritten social rules that NTs seem to impose on everyone other than themselves.

I have spent a ridiculous amount of time putting myself in other people's shoes and trying to figure out their behaviour toward me, and their behaviour in general. Isn't that empathy, even if I (apparently) don't do it very well? I spend a lot of time trying to figure out why other people lie just to hurt someone else, or to get others to hurt that person. Surely it would be more logical for eveyone to know the truth and to base their actions on that, rather than on some scenario someone made up. And most of the lies are so obvious, yet other NTs simply eat them up, rather than believe the truth.

If someone feels so abused by their spouse who has AS, there's this thing called divorce. I don't get why the woman who made the site, and all the others whining about how they are treated by people with AS, don't just get out of the situation. Luckily for them, that's all they have to do, and then it's over for them. On the other hand, someone with AS has to live with it for their whole life.