Autism without Alexithymia?

[Smoosh]

Hello everyone,

Technically, this is actually my second "hello" post, but my understanding of my own status re: ASD has changed, so I hope you'll forgive the repeat .

My very first post here was a little over a year ago, and I identified myself as HSP, requesting help understanding a person who mattered to me who I thought had ASD. One commenter mentioned that the person I was describing sounded alexithymic (a term I had never heard before), not autistic. Since then, my understanding of autism has changed quite drastically - to the point that I now believe it is possible that I myself might be autistic after all.

That said, I am absolutely not alexithymic, and I'm also a woman, so I'm finding a lot of the online tools for self-diagnosis to be really frustratingly useless, since they tend to lump traits associated with alexithymia in with ASD markers, and they tend to be geared toward the ways that autism manifests in men and boys only. So, I suppose I'm looking for input: does anyone here have experience as an autistic person, but who is highly empathic and imaginative (ie: not alexithymic)? Particularly if you are female, has it been hard to get anyone to take your thoughts about possibly being ASD seriously for this reason? Do you know of any resources geared toward people who are autistic but who do NOT have problems reading or understanding emotion, in themselves or others?

For those still reading, here's a list of things that have led me to question whether I might be autistic:

1) Feeling of being "different":
Since as far back as I can remember, I have always felt that I was experiencing the world fundamentally differently than other people. It has always seemed that I was experiencing both the emotional and the physical/sensory world more "vividly" than others, and I couldn't understand why they seemed so comparatively "meh" about things I found fascinating/delightful/enraging/important, etc. I always felt like I was cut from a fundamentally different cloth, and while this feeling caused me pain and isolation, it was not really social anxiety (ie: I didn't necessarily feel that there was anything wrong or unlikable about me, or that I was being "rejected" per se).

2) Seemingly stronger/more rigid/more highly prioritized moral code than others:
While on the one hand I would consider myself very emotionally sensitive to and aware of the people around me, I have often felt let down and even baffled by their reactions to certain situations, even when I thought I understood them very well. Specifically, in contexts where there is a moral imperative to act one way, but it would be emotionally easier to act the other way, I have often found myself shocked by the willingness of people who I thought were "good" people to prioritize what is easy over what is right. It's not that I don't understand where they're coming from - most of the time, I can see the pressures they're responding to, but I just don't understand how they justify bending to them. It's like the social discomfort "hits" them in a way that it doesn't hit me; like it just bounces off of me with no effect, or, in cases where there is a genuine, concrete social threat that I do experience, to me it's obvious that the principal matters more than my feelings . . . while to most people it seems to be the other way around. In terms of social pressure/emotional discomfort, it's like they're experiencing walls where I'm experiencing something more like cobwebs - I know they're there, but they're easy to walk through. I genuinely don't get how others could see them as insurmountable.

Obviously, situations can be nuanced and complex, and the "right" thing isn't always straightforward, but as an example: the way I see it, if lying is wrong, then unless there is an extremely *morally* compelling reason to do so, you don't lie, even if it would get you out of trouble. This seems to be different than average. And to be fair, sometimes when I voice an opinion/engage in a behaviour in front of a group, it's only by seeing other people's reactions afterwards that I realize that I did something "divergent" or "brave". So maybe I'm not as attuned to some aspects of socializing as I think I am.

3) Sensory quirks:
I have mild synesthesia, can't bear the feeling of certain fabrics, as a kid I had a lot of "nervous tics" which I now think might have been stimming behaviours (repetitive clearing of my throat, moving my head in a particular way, rolling my eyes until they "felt right", etc.), get easily overwhelmed in crowds or loud places, hate having my space invaded (though I like physical touch if it's with a person I know and like), etc.

4) Tendency to "not fit in":
While I wouldn't say I have trouble making friends, or that I am generally unpopular (quite the opposite), where there's an established "clique" I tend to either be immediately frozen out, no matter how hard I try to be non-threatening/compliant/friendly etc., or I tend to be the chosen scapegoat if the group goes through some kind of discomfort or difficult event, no matter how obvious it is that I had nothing to do with it. To be fair, I find clique dynamics unappealing, and don't really care to comply to them - but it is noteworthy to me how violent some of the reactions toward me can be, especially considering that I am generally liked and easy to get along with, and in many cases have never even directly interacted with anyone in the clique. As a result I tend to be friendly but a bit of a loner, with a very few close friends I like to spend time with and really talk to.

5) Long history of "special interests":
In childhood it was animals, then dinosaurs, then specific countries, then specific ecosystems, then a specific movie/book, etc.. Now it's usually languages, a specific grammatical concept, a specific historical figure, a specific psychological or medical disorder, a specific event, etc. I can talk and talk about these subjects and sometimes feel I am rambling but have difficulty stopping once I've started a story/subject.

6) Tend to be earnest, trusting and a bit naive:
Despite being sensitive and generally insightful to the emotions and motives of others, I can be overly trusting and earnest. In benign cases, this could mean that, though I sense the person I'm talking to is tired of the subject I'm talking about, when they act politely interested I feel compelled to continue, because "why would they lie about being interested if they're not?" On the darker side, this has meant that I've repeatedly been an easy target for social and sexual predators - even though I see that their stories don't add up, or might sense something wrong, I feel compelled to believe that there must be an honourable explanation and that I must just try harder to understand them. In most other cases I'd spot the "charming predator" from a mile away, while everyone else was infatuated and totally taken in, so this inconsistency seems a bit odd. Now that I'm in my 30's I'm much less easily manipulated, but I still notice that, compared to others, I'm "too enthusiastic" about life in general, or "too honest" about some things (ie: answering "How are you?" with an honest answer instead of "Good, you?").

7) Miscellaneous:
As a toddler, had "temper tantrums" that consisted of me screaming and hitting my own head on the ground; in elementary school I used to hit myself in the head when I did something incorrectly, and had to be taught not to do that; remember my mum teaching me at a young age to look at the space between people's eyes instead of directly in their eyes, so that it would look like I was making eye contact even though I wasn't, because it felt "too intense", etc.

So, I guess . . . thoughts? This community is wonderful and I'd very much welcome any input or insight you might have. I hope you're all safe and sound in these weird times .

 

[Thinx]

Yes although you would need to go to a qualified person for diagnosis, what you describe sounds like autism /ASD as it may be experienced by a person socialised as a woman. Have a look at Jessica Kingsley publishers catalogue for texts by women with Autism and clinicians about this.

There's research ongoing to find out more about how women's socialisation and possibly other factors that are genetic, produce different issues for women with Autism and mean also that the diagnostic criteria that are behavioral and were developed around male experience of autism are not working well to diagnose women.

Women tend to get more input on social skills and on facilitating others as they grow up, this can help them to mask ASD but as you say, the internal experience can be confusion and distress, and problems through our simplicity and directness in a world dominated by neurotypical people who tend to have agendas other than what they say or present, and who also expect others to be that way.

It's confusing for them that people with autism generally don't have agendas other than what we say and present, and so there's 2 way confusion, which tends to be hard to solve.

Not everyone wants or needs a diagnosis, and for women they can still be hard to attain, though this seems to be changing.

I hope you find it helpful and supportive here, and the discussions prove useful for you.

 

[Giraffes]

Hi echo to Thinx's advise, research female presentation of Autism as i wasn't't diagnosed till 40 years old and relate completely to all of your post.

 

[Jumpback]

I’m in the process of trying to be clearly diagnosed. I have always had a large number of more minor autism related issues, but then more major executive function issues. I have asked two professionals with experience with this issue and both believe that I have ASD

Part of what clarifies things for me is that I have long been diagnosed with things that surround ASD, in my case anxiety disorders and ADHD and even nonexistent OCD.

The brain is incredibly, fantastically complicated, and the DSM attempts to categorize all issues into not too many problems or “disorders.” I’m somewhat convinced that people diagnosed with ASD would be categorized into more categories if the DSM was more complicated, but as it is the category is a bit of a catch all. I have no evidence and so on, but things just seem this way to me

 

[Kalinychta]

So, I suppose I'm looking for input: does anyone here have experience as an autistic person, but who is highly empathic and imaginative (ie: not alexithymic)?

Yep, there are a large number of people on the forum who fit this description. I’m one of them. I have always been extremely sensitive to the emotions and feelings of others, and I’ve had an enormous imagination and “inner life” forever. These are definitely autistic traits (I was specifically asked them when I was diagnosed).

 

[Sarah S]

I can only say from that list i fit all of them . Not the sensory quirks tho . Tics OH yes most of the criterias to get diagnosed (pretty much double of what you need )

As Thinx / Giraff / kalinychta have said i agree as well . Us wimen are often diagnosed later in life as adults due to our ways of showing our tics is usely less out showing then males. I`ve been evaluated most of my life from 4 years old and pretty much every time they found more diagnosis , and ASD they dident found until i was in my 40´s if i counted this right

The best advice i can give is the same search the Webb and other info reg female ASD & learn about this.

The only one than can determan if its worth it to get diagnose is you . If you feel you would benefit from actually knowing that you have ASD on paper then you should go for it if possible .If you feel you have youre life under control then no need to

And last DONT compare youre self to much to any of us in here or in reel life , nor the descriptions of possible Tics. NP diagnosis are highly individual and noone is the same( Yes we all share some features (those stipulated in DSM 5 to get said diagnose) but the rest is highly individual and also differs from both obviously gender, level of said ASD, + possible added co morbid diagnosis to said ASD.

 

[Kalinychta]

I know there are others, but I’m pretty sure that @Fino is “one of us,” so to speak. It is not a female-autism-thing to be hyper-empathetic. It affects males as well as females, equally.

 

[Sarah S]

I’m in the process of trying to be clearly diagnosed. I have always had a large number of more minor autism related issues, but then more major executive function issues. I have asked two professionals with experience with this issue and both believe that I have ASD

Part of what clarifies things for me is that I have long been diagnosed with things that surround ASD, in my case anxiety disorders and ADHD and even nonexistent OCD.

If you are previously diagnosed with ADHD i would say you have a HIGH possibility of also having ASD as its more or less the norm these days that if you have ADHD you most probaly also have ASD and vice verse (the norm is you have minimum 2 diagnosis (these too ) BUT of course only a cert evaluation can determan this.

 

[VictorR]

Welcome! I don't think I have anything to add that our peers haven't already said

 

[Smoosh]

Yes although you would need to go to a qualified person for diagnosis, what you describe sounds like autism /ASD as it may be experienced by a person socialised as a woman. Have a look at Jessica Kingsley publishers catalogue for texts by women with Autism and clinicians about this.

I didn't know about this specific publisher - I'll definitely give that a look! Perusing their book titles now, I definitely think that this looks more useful than what I've found thus far. I have of course been scouring the internet for resources on autism in women, but thus far am finding it really, almost depressingly lacking - and once again, tending to focus mostly on the cases of women who have major social/emotional difficulties as a result of their ASD. For me, as a person who doesn't really identify as having either (not in any really major way, at least), these resources really don't do much to help me.

I would very much like to get properly assessed, and possibly diagnosed, but where I am, there is no government funding for autism assessment in adults - you're looking at a private assessment, which is going to cost between $2000-$4000 (apparently). Given that I am perfectly able to live independently, and so don't feel that I'm "impaired" per se (ie: don't need the social/assisted housing that a diagnosis could qualify me for), this is a big cost. I'm a self-employed artist, so I don;t have a huge expendable income.

For me, seeking a diagnosis/insight about this is mostly about helping me to understand myself and why my professional, artistic, and personal "processes" never seem to quite line up with "average". I can definitely say that throughout my life, probably the single most ongoing source of stress has been the sense that I can't seem to emulate the habits of other "successful" people - even when I'm doing great, the fact that my processes of study/preparation/work look different than those of the mentors and predecessors around me consistently causes friction, from outside observers and within myself. It's frustrating, because the focus becomes all about how well I'm conforming to conventional methods, rather than the quality of the work I am actually producing. I think a diagnosis could go a long way to explaining to others, and validating to myself, what I already know in my heart of hearts: my brain isn't average, so what works for others often really doesn't work for me. Given that so much of what mentors in my life have said to me has not really "fit", I think it would help me to feel a bit less lost and confused to know that I belonged to a specific community, who might have better insight into how to let a different kind of mind flourish.

 

[Smoosh]

I’m in the process of trying to be clearly diagnosed. I have always had a large number of more minor autism related issues, but then more major executive function issues. I have asked two professionals with experience with this issue and both believe that I have ASD

Part of what clarifies things for me is that I have long been diagnosed with things that surround ASD, in my case anxiety disorders and ADHD and even nonexistent OCD.

The brain is incredibly, fantastically complicated, and the DSM attempts to categorize all issues into not too many problems or “disorders.” I’m somewhat convinced that people diagnosed with ASD would be categorized into more categories if the DSM was more complicated, but as it is the category is a bit of a catch all. I have no evidence and so on, but things just seem this way to me

I think you're bang-on - it's not so simple. I have also contemplated ADD/ADHD in the past (my father was formally diagnosed in adulthood, and my mother almost certainly has ADHD too), as I fit that criteria quite well. But there seems to be more to it than just that for me, and learning more about autism, it seems like a more elegant overall explanation for the many different areas of slight eccentricity (though not, I would say, dysfunction) that I have experienced all my life.

I hope that you manage to get the diagnosis you're seeking, and more importantly, the support you need. Here adult assessments for autism are expensive (despite us having good all-round health care in other ways), so I hope that wherever you are you have it better.

 

[Smoosh]

Yep, there are a large number of people on the forum who fit this description. I’m one of them. I have always been extremely sensitive to the emotions and feelings of others, and I’ve had an enormous imagination and “inner life” forever. These are definitely autistic traits (I was specifically asked them when I was diagnosed).

Thank you, this is very helpful to know. I often struggle to feel like the way descriptions of autism resonate with me is valid, because I am SO far from the "Rainman" type that people (including, it seems, many mental health professionals) associate with "real" autism. I would like to be assessed and seek a diagnosis with a properly trained professional, but where I am assessments for adults can only be done by a private practitioner and they cost between $2000-$4000. I don't have that kind of money to spare .

 

[Transgressivecharm]

Hi @Smoosh.

Yep, there are a large number of people on the forum who fit this description. I’m one of them. I have always been extremely sensitive to the emotions and feelings of others, and I’ve had an enormous imagination and “inner life” forever. These are definitely autistic traits (I was specifically asked them when I was diagnosed).

Yaas, I call my imaginary world my paracosm.

 

[Thinx]

Yes try reading one or two of those books by women with Autism, one woman was discussing how she was working with autism issues for years, and her male partner had autism, but only latterly realised that this applied to her, due to the combination of having some skills and abilities that didn't seem to fit, and being well functioning and coping. Common experience for women with ASD1.

Just a caution, not many people here would advise you to share your idea that you have autism especially not in work contexts, or a diagnosis should you choose to get one. It doesn't work the way you seem to hope, unfortunately.

Because of the fact that what most people know about is the Rainman stereotype, you find that you are understood to be linking yourself to that, and rather than explaining some subtle differences that currently make people find you quirky or a bit odd maybe, after you share a diagnosis you become other, strange, different from them in a concerning way.

It doesn't lead to acceptance, and in so far as it's seen as the reason for how you act, it's seen as a disorder. ASD stands for Autism Spectrum Disorder. People overreact. Basically you think you are telling them you have something like Dyslexia, which is near to the truth really, but they hear Rainman.

 

[Sarah S]

I think you're bang-on - it's not so simple. I have also contemplated ADD/ADHD in the past (my father was formally diagnosed in adulthood, and my mother almost certainly has ADHD too), as I fit that criteria quite well. But there seems to be more to it than just that for me, and learning more about autism, it seems like a more elegant overall explanation for the many different areas of slight eccentricity (though not, I would say, dysfunction) that I have experienced all my life.

if youre parents are already diagnosed (or as in this case yorue dad i can pretty much guarantee you that you most probaly also have ADHD ( same there as with ASD us wimen show our Tics differently and so on then males) + as i said ASD is a WELL known Co morbid diagnose to ADHD

 

[Sarah S]

Just a caution, not many people here would advise you to share your idea that you have autism especially not in work contexts, or a diagnosis should you choose to get one. It doesn't work the way you seem to hope, unfortunately.

Because of the fact that what most people know about is the Rainman stereotype, you find that you are understood to be linking yourself to that, and rather than explaining some subtle differences that currently make people find you quirky or a bit odd maybe, after you share a diagnosis you become other, strange, different from them in a concerning way.

It doesn't lead to acceptance, and in so far as it's seen as the reason for how you act, it's seen as a disorder. ASD stands for Autism Spectrum Disorder. People overreact. Basically you think you are telling them you have something like Dyslexia, which is near to the truth really, but they hear Rainman.

Not all are like that tho Thinx i havent yet met anyone that after i told them about my diagnosis thought differently of me.

This said i agree tho that its NOT always a good idea to tell others and YES there is a risk involved with taking this step .

BUT as i also said many times before us with this or other diagnosis hiding will NOT help others actually understanding what ASD is and that its NOT automatically rainman or woman and many can actually function reasonable well in socity and have " normal " life. im actually living all alone ( i have support around me but not close its mostly by phone ) If we dont dare to explain to our family members or close friends how on earth are they gonna learn that were still the exact same as we were before this diagnose ?

 

[Sarah S]

And Smoosh may i suggest in the mean time you do some On line tests for both ASD as well as ADHD (the ASD tests you see in my Signature so just do search on said name ) Keep in mind this that neither of them are a diagnose tool and only a cert evalution can determan IF and if so what diagnosis you might have.

The RAADS-R test is however also well known and widley acknowledged diagnose TOOL (ONE of them not all ) for the pro`s to use and add in to a possible diagnose of ASD so that would give you a strong hint that you might actually have ASD. And it would be worth it to get a professional evaluation

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)

 

[Thinx]

Yes its often fine that you say this to anyone you really can engage with long enough and fully enough to explain what you are saying, such as friends or family sometimes.

However, at first you may not feel competent to fully explain, so even that can be hard. People who love you tend to be accepting, but sometimes they say stuff like of course it's fine you are fine, don't be afraid to say who you are, from a position of ignorance of what that will actually mean for you in the wider world with others who love you less than they do, or even don't like or care about you much.

Save being bold for when you feel confident and at ease with yourself around this, and even then I still wouldn't share it at work.

 

[Sarah S]

Yes its often fine that you say this to anyone you really can engage with long enough and fully enough to explain what you are saying, such as friends or family sometimes.

However, at first you may not feel competent to fully explain, so even that can be hard. People who love you tend to be accepting, but sometimes they say stuff like of course it's fine you are fine, don't be afraid to say who you are, from a position of ignorance of what that will actually mean for you in the wider world with others who love you less than they do, or even don't like or care about you much.

Save being bold for when you feel confident and at ease with yourself around this, and even then I still wouldn't share it at work.

Now were on the same page i agree (i dident share that i had more then ADHD to my employers when i was still in the working life) & as i said they accepted that as well. Yes i was weird needed longer learning period etc.. BUT i learnt to get the job done and thats what they cared about.

 

[Alexej]

The RAADS-R test is however also well known and widley acknowledged diagnose TOOL (ONE of them not all ) for the pro`s to use and add in to a possible diagnose of ASD so that would give you a strong hint that you might actually have ASD. And it would be worth it to get a professional evaluation

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)

As I was getting my diagnosis the professional used the Raads test (it may have been the unrevised version which is what the last R indicates). However, he was using it as a source of input to his evaluation and not as an absolute yes/no test.

Just a reflection on the use of this test