So, apaprently I can't be diagnosed with Asperger's anymore
22 Feb 2014, 7:37 pm
(First, I know I spelled it wrong. I spell it apaprently due to a thing and also it feels better.)
I was never 'Officially' diagnosed. When I was ten, I was going to be tested for Bipolar as part of a clinical study. I was DQ'd due to the psychologist deciding I fit the criteria for AS better, that was when Asperger's was first suggested. When I was a kid, I couldn't look in anyone's eyes, I had extreme difficulty making friends (my only three friends I made in elementary school are the only three friends I still have from before I moved a year and a half ago. Two of them, twins, are geniuses and thus I was the only one who could relate to them in elementary school. The other one has been my friend since I was three and we drifted apart and are more like family than friends, now). My social skills were terrible, I had stimming things since before I could talk, though I developed speech earlier than normal. I had special interests, though they weren't always narrow. I couldn't stand being touched and would jerk away if someone tried to hug me. I had many others symptoms.
Most of the many that came after that psychologist agreed with the AS diagnosis, but still it was never officially diagnosed. I was supposed to be tested, but then the school refused to pay for it. (Legally, in that state they were required, yet they still refused.)
Thus it came that, by this point, I have taught myself a long list of rules, for example, maintain eye contact - but make sure to look away from time to time, lest you come off as staring - and don't look away too often, lest you be mistaken for uninterested.
I have taught myself how to behave in different situations, taught myself social skills, observed people and consciously formed rules of how to act in different scenarios. I learned that certain phrases worked well in some situations, others didn't, and those certain phrases are the ones I tend to repeat over and over again, because they work.
I have taught myself to appear almost completely neurotypical. (Oh, by the way, I did wind up getting diagnosed with Bipolar I)
Sometimes I'll do things that make it apparent that I'm not NT, mostly in online faux pas, sometimes offline... though I've left the house maybe two dozen times since I moved a year and a half and some ago.
And now, the psychiatrist I'm seeing says that there's no way I'd be able to get diagnosed with any form of autism spectrum disorder, likely not even PDD-NOS, because I'm so freakin' good at faking it. I have no empathy, though I'm good at pretending to, my social skills are all consciously created, I went through a lot of pain to get to the level of passing as NT, and now it winds up making it so that I can't get diagnosed.
(If you're wondering why I even care about the diagnosis, it's because, one, it's practically proof I'm not making things up to myself, two, labels make me feel secure because they help me understand myself, three, it would help me apply for disability, and four, there are more groups to help with people with AS than with any of my other diagnoses, and then there's a multitude of other reasons but I'm having a lot of difficulty wording right now because I'm ill and also I ate something I'm allergic to that causes mind fuzziness and nausea and headaches and fatigue and stuff >> But most of the time it doesn't cause any symptoms so I eat it anyway)
22 Feb 2014, 8:06 pm
I can understand your reasons for wanting a diagnosis. I just want to let you know that your experience regarding diagnosis is not unique, as many women on the spectrum face the same challenge. It is because the current diagnostic criteria is based on the male profile. It is much harder for women to receive a diagnosis because of all the coping and masking strategies. Women are more likely to be misdiagnosed, overlooked or labelled 'residual' Asperger's. You'll likely be told that you have 'Asperger's' but you're not dysfunctional enough to merit a diagnostic report. It is very frustrating. There are professionals out there who are working toward getting a female diagnostic profile recognised.
_________________
I have thrown "normal" out the window.
Sweetleaf
Veteran
Joined: 6 Jan 2011
Age: 35
Gender: Female
Posts: 35,009
Location: Somewhere in Colorado
22 Feb 2014, 8:10 pm
Not all females with aspergers have these coping and masking strategies....I know I don't.
_________________
We won't go back.
22 Feb 2014, 8:47 pm
Not all females with aspergers have these coping and masking strategies....
Agreed. I have met women who do have a diagnosis of Asperger's and they are very noticeably autistic. I don't really buy into the notion that people can mask autistic behaviours so successfully. If you can choose to behave in a way which isn't autistic, then that is more than likely because you're not autistic.
My son has a diagnosis, and he can experience considerable distress as a result of behaviours and ways of being that most people seem to think should be easy to modify, but for him it is simply not possible.
22 Feb 2014, 9:02 pm
I don't agree with that at all. Many people can learn compensatory strategies that they can employ for varied lengths of time. But they are compensatory strategies, not natural ways of being. My daughter can look so NT sometimes that I almost think maybe we have it all wrong, but then her ability to cope breaks down for whatever reason and it's very clear. Usually the first time it happens in front of someone (like a teacher) they are literally dumbfounded. Even I am sometimes taken aback by it.
But, I would also have to say that I would consider myself to have "decent" social skills, but most of them are probably more "rote" and an activation of appropriate rule sets, much moreso than I think most NT people experience. But I would not consider myself to have AS, though I do consider myself to have some traits and ADHD.
I don't need to have the label of AS to have learned some techniques used by people with AS to help myself though. I encourage you to challenge your belief that you must have a label to understand yourself.
_________________
Mom to 2 exceptional atypical kids
Long BAP lineage
22 Feb 2014, 9:05 pm
Not all females with aspergers have these coping and masking strategies....
Agreed. I have met women who do have a diagnosis of Asperger's and they are very noticeably autistic. I don't really buy into the notion that people can mask autistic behaviours so successfully. If you can choose to behave in a way which isn't autistic, then that is more than likely because you're not autistic.
My son has a diagnosis, and he can experience considerable distress as a result of behaviours and ways of being that most people seem to think should be easy to modify, but for him it is simply not possible.
I think that people absolutely develop coping strategies, some better than others. That is the whole point of early services for children. To develop the ability to relate and tolerate living in the world and improve functioning. Though it's also true that at a certain point of improvement, people seem to get undiagnosed, despite that the manuals say that should not happen.
It seems logical to me that if it takes a trained individual a number of hours to reach a diagnosis there will be times for many people who have ASD that they will seem close to typical to others. Whether that is always desirable or not I'm unsure.
22 Feb 2014, 9:06 pm
Not all females with aspergers have these coping and masking strategies....
Agreed. I have met women who do have a diagnosis of Asperger's and they are very noticeably autistic. I don't really buy into the notion that people can mask autistic behaviours so successfully. If you can choose to behave in a way which isn't autistic, then that is more than likely because you're not autistic.
My son has a diagnosis, and he can experience considerable distress as a result of behaviours and ways of being that most people seem to think should be easy to modify, but for him it is simply not possible.
I think that people absolutely develop coping strategies, some better than others. That is the whole point of early services for children. To develop the ability to relate and tolerate living in the world and improve functioning. Though it's also true that at a certain point of improvement, people seem to get undiagnosed, despite that the manuals say that should not happen.
It seems logical to me that if it takes a trained individual a number of hours to reach a diagnosis there will be times for many people who have ASD that they will seem close to typical to others. Whether that is always desirable or not I'm unsure.
22 Feb 2014, 9:06 pm
I was never 'Officially' diagnosed. When I was ten, I was going to be tested for Bipolar as part of a clinical study. I was DQ'd due to the psychologist deciding I fit the criteria for AS better, that was when Asperger's was first suggested. When I was a kid, I couldn't look in anyone's eyes, I had extreme difficulty making friends (my only three friends I made in elementary school are the only three friends I still have from before I moved a year and a half ago. Two of them, twins, are geniuses and thus I was the only one who could relate to them in elementary school. The other one has been my friend since I was three and we drifted apart and are more like family than friends, now). My social skills were terrible, I had stimming things since before I could talk, though I developed speech earlier than normal. I had special interests, though they weren't always narrow. I couldn't stand being touched and would jerk away if someone tried to hug me. I had many others symptoms.
Most of the many that came after that psychologist agreed with the AS diagnosis, but still it was never officially diagnosed. I was supposed to be tested, but then the school refused to pay for it. (Legally, in that state they were required, yet they still refused.)
Thus it came that, by this point, I have taught myself a long list of rules, for example, maintain eye contact - but make sure to look away from time to time, lest you come off as staring - and don't look away too often, lest you be mistaken for uninterested.
I have taught myself how to behave in different situations, taught myself social skills, observed people and consciously formed rules of how to act in different scenarios. I learned that certain phrases worked well in some situations, others didn't, and those certain phrases are the ones I tend to repeat over and over again, because they work.
I have taught myself to appear almost completely neurotypical. (Oh, by the way, I did wind up getting diagnosed with Bipolar I)
Sometimes I'll do things that make it apparent that I'm not NT, mostly in online faux pas, sometimes offline... though I've left the house maybe two dozen times since I moved a year and a half and some ago.
And now, the psychiatrist I'm seeing says that there's no way I'd be able to get diagnosed with any form of autism spectrum disorder, likely not even PDD-NOS, because I'm so freakin' good at faking it. I have no empathy, though I'm good at pretending to, my social skills are all consciously created, I went through a lot of pain to get to the level of passing as NT, and now it winds up making it so that I can't get diagnosed.
(If you're wondering why I even care about the diagnosis, it's because, one, it's practically proof I'm not making things up to myself, two, labels make me feel secure because they help me understand myself, three, it would help me apply for disability, and four, there are more groups to help with people with AS than with any of my other diagnoses, and then there's a multitude of other reasons but I'm having a lot of difficulty wording right now because I'm ill and also I ate something I'm allergic to that causes mind fuzziness and nausea and headaches and fatigue and stuff >> But most of the time it doesn't cause any symptoms so I eat it anyway)
At this point in my life I worried that the coping mechanisms I've developed would mask autism and mislead anyone trying to diagnose me.
My therapist said 'An experienced professional will see thru that.'
I'm guessing the person who told you that you can't be diagnosed is a generalist? They don't actually specialize in autism?
If that's the case, their opinion isn't worth much.
Press to be seen by someone who IS an expert in autism. Once you're there with them, TELL them what the other person said. TELL them what you do that you think may mask autistic symptoms.
Be totally open with them, and tell them everything. Let them decide. MAKE SURE THEY SPECIALIZE IN AUTISM, tho'.
Best thing I can suggest.
If possible, you might even try to bypass the person who said "No...it's too late." See if you can go directly to someone who specializes.
You do have one thing going for you aside from your own words...the fact you were earlier said to be on the spectrum. That will carry some weight with a professional in the field. They know what high functioning autistic kids can grow up to be.
Push for this. Do everything you can to be seen by someone who's in the autism field.
_________________
AQ 31
Your Aspie score: 100 of 200 / Your neurotypical (non-autistic) score: 101 of 200
You seem to have both Aspie and neurotypical traits
What would these results mean? Been told here I must be a "half pint".
22 Feb 2014, 9:11 pm
If you're convinced that it's seriously an issue, get a second opinion. That's what I would do.
I have records from only one doctor that suggests I'm not on the spectrum, and that includes a lot of doctors. My general rule of thumb with any medical condition, physical or mental, is three strikes, it's out. If you get one doctor saying it's wrong, look again. A second doctor, consider the cost of a third, and if it's doable and serious enough, go for it. If the third doctor refuses, then it's likely some other underlying issue.
I would also recommend someone who does a family interview as well, since a lot of autism's hardships are worked around as you get older. Not everyone is perfect, and I guess I just have the right traits to still look autistic to someone who knows to look for the signs, but some people are really good at hiding it. A family interview can help because your parent can confirm any sort of difficulties you had growing up.
_________________
IQ:134
AspieQuiz Score: 159
AQ: 43
"Don't be That One Aspie..."
22 Feb 2014, 9:12 pm
If it's any consolation, you did spell Asperger's correctly. (Hint, it's written on the home page). It's a proper noun, after Dr Hans Asperger, Austrian paediatrician.
_________________
The ones who say “You can’t” and “You won’t” are probably the ones scared that you will. - Unknown
22 Feb 2014, 10:12 pm
Haha, yeah. I was actually meaning that the word I spelled incorrectly was "apparently" (and that caused anxiety writing it correctly right there... >> ) but thank you for the attempt at consolation!
To everyone else, thank you for your input, and as I can't think of anything to be able to specifically reply to each, some general response:
I've been in theater my entire life (literally, my mother was on stage while she was pregnant with me and I was Baby Jesus in the Nativity when I was a little more than six months old) and I think this may have helped me be able to mask things. In junior high, I spent the entire time masking a lot of myself (even though I was bullied severely, I probably would have been either way). I pretended to be absurdly innocent minded, and pretended to live under a rock and not know who anyone was (it was one of the only times I got semi-positive attention from the other students. They'd ask a name - "Michael Jackson", "Oprah", "Michael Jordan", etcetera - and I would say I didn't know them. They always believed me, and it was only true half the time.) In ninth grade, I went into high school, and stopped that mask. I allowed myself to be myself. My social skills still weren't great, but I started observing others so that I could hopefully figure things out. (There had already been some things I had learned.)
I joined a new theater halfway through ninth grade, and my social skills advanced much quicker there. Still, though, it was almost always conscious realizations, and other times it was from practice. I'm fairly intelligent, which may also be something making it easier for me to develop the coping skills.
Something I forgot to mention in the main post was the meltdowns; I had them weekly in elementary school, by eighth grade they'd become daily, sometimes twice daily. I've only had maybe five or six since the beginning of ninth grade (I should be graduating this year, but I graduated early).
In the past year and a half and some, I've left the house about two dozen times at the most, and half those were psychiatrist or doctor or therapist appointments. Thus, almost all of my social interaction since June 2012 has been online. I've been able to carefully phrase things, and to learn how to interpret people better, as interpreting text is a lot more difficult than interpreting people in person. This has not, however, stopped me from being banned from a chatroom and losing many friends, all due to behaviors that I couldn't see were there.
There is (at least) one behavior I have that is socially inept that I can't seem to mask, because I never realize I'm doing it. When someone's upset, I often say something similar that I've gone through - an attempt to show I can understand, but it often comes across as my trying to make it all about me. (This not being something I realized myself, but rather figured out after I was sent a very nasty message from someone, who I had thought I had been close friends with, because they'd decided that they weren't going to put up with it anymore and were going to tell me exactly why they were no longer my friend.)
Also, apologies for any scattered thoughts or difficult to read sentences, I'm still dealing with the effects of the allergy and am thus still having trouble thinking.
22 Feb 2014, 10:13 pm
Not all females with aspergers have these coping and masking strategies....I know I don't.
Hmm, I didn't speak in absolutes - you did. I said 'many' not 'all' women. I do recognise that not everyone has the same level of coping, self-management, compensatory and masking strategies. However, individuals who are considered less functional are more likely to get a diagnostic report than those who give the 'appearance' of being functional.
You have met women who fit the current 'diagnostic criteria' based on the male profile. The issue is that there are individuals with ASD who aren't recognised because they don't fit the 'stereotypes'. It's invalidating. And just because individuals are able to learn coping/masking/compensatory strategies doesn't mean that life is easier for them. Things do fall apart and life is challenging, thanks. A lot of struggle and effort is put into 'pretending' to be normal and even those efforts don't make you 'neurotypical'. Perhaps its worth reading more current research on Autistic females (and people/adults with high-functioning Autism). It seems to me that your current viewpoint is shaped by your own ('challenging') experiences with your son and the observations of the few women that you have met.
----
One reason for a diagnostic report is to receive supportive interventions/services. If a professional sees that you function well-enough they may refuse to affix a label to you. To them, knowing that you have ASD is meant to be good enough. They may consider you to be quite capable of 'helping' yourself - it's not meant as an insult. If you really feel that you need a report you need to find someone who specialises in Autism (particularly someone who has experience in diagnosing females or high-functioning individuals), and if they hesitate you need to argue your case very well. You need to explain to them why you need proof on paper.
_________________
I have thrown "normal" out the window.
23 Feb 2014, 12:41 am
It's kind of weird looking at the diagnostic criteria though because none of them seem inherently male or female. I'll take the DSM V definition for autism for example.
Just as a recap...
Diagnostic Criteria
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Specify current severity:
Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
I can't see anything in there that would be considered masculine or feminine but it seems like people are just looking for "masculine traits" in autism which don't exist in many females. I guess it depends on your doctor because I don't really fit the "male" stereotypes of autism, but yeah, with less women to get information on I guess you're gonna find people who just "step outside of the definition" and try to match what they know, which is male behaviour patterns, which are both formed by upbringing and society too.
One thing I notice personally is that a lot of female autistics are still violent. Just upon themselves as opposed to others. Male autistics are more likely to be more externally aggressive since they are less likely to be punished for it than females, and since punishment is a pretty black-and-white concept, most autistic children are understanding that much quicker than the actual society that forms those punishments. Female autistics still get every bit as frustrated and unable to control their feelings as males but usually take it on themselves since society punishes them directly if they take it out on others. I experienced this personally back when I was younger.
_________________
IQ:134
AspieQuiz Score: 159
AQ: 43
"Don't be That One Aspie..."
23 Feb 2014, 12:54 am
The theory is that males are more rigid, logical and have a poorer ability to emapthise or even pick up on peoples feelings.
I'm not explaining it well because my higher brain functions want to go to sleep.
I have a few masked behaviours or things that relate to the female presentation of AS. I appear shy and withdrawn but can pick up social cues quickly when pointed out to me. I can mimic a few things about people and more if they are a character (in TV or film) that I really like. I've had people feel sorry for me and welcome me into the group rather than reject me. I learned to suppress meltdowns. I'm very non-confrontational. But according to Simon Baron Cohen I relate to the male stereotype too. I can be more logical than empathetic but on rare occasions I seem to have more insight about people's feelings than other people. I have had to learn quite a lot to get this far.
Anyway, it's easier to diagnose autism in males because they show more of the symptoms and people are looking for the presentation of autism in males too. Females do present them differently but some will present it like males do and will probably be diagnosed sooner than those who don't.
_________________
My band photography blog - http://lostthroughthelens.wordpress.com/
My personal blog - http://helptheywantmetosocialise.wordpress.com/
| Similar Topics | |
|---|---|
| I was diagnosed recently. |
22 Jan 2025, 5:57 pm |
| newly diagnosed |
28 Dec 2024, 4:39 pm |
| Diagnosed ASD + Executive Dysfunction |
15 Jan 2025, 10:57 pm |
| I think SNL Musk coming out as asperger is why Trump won. |
31 Jan 2025, 5:28 am |
