posting with her consent: could she be on the spectrum?

[LJ-Ripley]

Hi everyone,

so this is my first time one any online forum ever. I hope this will not be too long or too confusing. If I have not chosen the right forum, I apologize.

The reason I am posting is this: I am in a relationship with a wonderful woman, we live together and have done so for over 5 years. Overall our relationship is good, but we have some deep problems when it comes to communicating. We have worked on it and we are getting better, but it is a struggle. It is important to note, that we do not have the same first language. Our life is mainly lived in German and English, whereas her first language is Hungarian.
Recently we have started to suspect that she might be on the spectrum. I am posting here because I want to be there for her and support her but I am also worried that we are going in the wrong direction and that maybe this way we are not addressing things appropriately or we are preventing her from getting help for something different (like depression and/or social anxiety).
Everything I am writing here is with her consent. She knows that I am writing and also about what (she has in fact read through this and corrected all my "doesnt" to "doesn't")

Some of the reasons we suspect this are:

• she is very anxious around almost all social situations. Especially now with COVID and the loss of contact she feels like she has lost all practice in social situations and doesn't know how to engage in social interactions anymore. She is craving social contact and we have common friends that we spend time with. When we meet with them she is engaged with them, but feels constantly awkward and is worried about doing or saying the wrong thing (her words: "I am working hard not to show how anxious I am").
• she learned her social behavior from movies/TV. She has told me that she learned how to interact with other people by deciphering patterns from of behavior from movies/TV. To this day she takes great delight in "homages" or situations that make her feel like she is in a movie/re-enacting it. She also finds people on TV/in movies calming because their behavior is predictable as it follows patterns and tropes.
  
• she has selective mutism. In stressful situations, especially emotionally stressful ones (i.e. we have a disagreement over something) but not exclusively (i.e. time pressure) she is unable to talk. Recently she told me that it feels like her throat and mouth are "closed up" and there is an immense pressure. We have started working around this by: whenever possible she tells me verbally that she cannot talk right now. If this doesn't work she uses sign language to say the same. After some time, when she can talk again we try to talk about what it was that was stressing her out so much.
• she takes things I say very literally. When I tell her we leave at 3pm and we are not out the door by 3pm sharp she gets very anxious. In the past, I have told her on occasion that I do not really like the color purple. Recently I told her a like a purple item (also it´s color) and she got very confused, as "I had said that I dislike the color purple and this item is purple". She does however understand phrases like "the apple of my eye", "raining cats and dogs" etc.
  
• she feels VERY intense emotions but is unable to know which emotion(s) specifically she is feeling. She can be crying or shaking because she is so tense but is unable to identify her feelings in that moment.
• she is empathic (to a degree). She can usually empathize quite well, especially with me or other people she knows. What I mean is that she can tell when I am happy/sad/angry/frustrated etc. Her problem is usually that she doesn't quite understand WHY I feel the way I feel. When we have an argument she can tell my emotions/feelings. But in terms of understanding why I feel the way I do, she usually just assumes it is the last thing I said (even if that was part of a longer explanation with multiple parts/reasons that lead to my frustration).
  
• she gets so absorbed she doesn't realize when I speak with her. Sometimes I have to address her multiple times very loudly, or sit next to her/move into her field of vision to get her attention.
  
• plans and predictability are very important to her. When she needs to do a task/plan a day etc. she does so with immense detail and great care. If things then do not go according to plan, things are ruined for her. She has a hard time getting back on track or reorganizing what she wanted to do.
• she cannot play with children. She has two little nephews age 3 and 5. When she tries to play with them (usually with LEGO or by reading a story) and the children loose interest, she does not interrupt the play or change her behavior to recapture their attention, she just keeps going. Usually she just finishes the LEGO project by herself
• she has a hard time understanding how many details she needs to give when talking to a person. She goes on tangents a lot to explain things in great detail that are not or only remotely important to what she is actually trying to talk about. Also, everything she says needs to be 100% correct, so generalizations are a problem. When she does make a generalizing statement (i.e. all the e-Mails at work today were easy to answer), she then needs to correct herself immediately and explain (i.e. in fact, there were 2, no 3 e-Mails that were not easy. They were quite complex and required me to do research on these topics:...)

However, there are some things that from my limited understanding are missing from "typical" ASD characteristics:

• She doesn't really have any sensory issues. She dislikes bright light and prefers to wear sunglasses outside on days that are not cloudy, but according to her this is the only thing.
• she doesn't really stim. She presses her pointer finger and thumb together forcefully when she gets upset, but nothing else.
• she does have interests she cares about: LEGO, movies/TV, comic books. But she does not engage with them very often or talks about them excessively.

Anyway, I apologize if this is very long. We have talked about whether she wants to get a diagnosis or join a group in our area. But as of now she is very afraid. The thought of being on the spectrum is very comforting to her, as she now feels less broken/lazy/awkward etc. But she is worried that if she would join a group or try to get diagnosed she would be told that she is not on the spectrum and have to go back to feeling this way.

I am no professional and I also go back and forth between feeling like we really stumbled across something that FITS and the thought of maybe interpreting too much into it and for my part "pathologizing" something that is not that big of a thing (I know that autism is not a disorder, I just don't know a better word for what I am worried I might be doing).

I guess I am just looking for some feedback on our situation and if people feel like maybe we might be on the right track. One sentence that stuck with me in researching about autism is that "a good way to know if you are autistic is if the experiences of other autistic people resonate with your own". So I guess I am trying to do this the other way around and see if her/our experiences resonate with somebody here.

Thanks a lot in advance and again: I am sorry that this go so long.

 

[Major Tom]

All of these issues would be great to raise with a psychiatrist. Nobody here can diagnose. Welcome to the forums.

 

[LJ-Ripley]

All of these issues would be great to raise with a psychiatrist. Nobody here can diagnose. Welcome to the forums.

Thanks for the response and the welcome.

Like I said: right now she is scared to seek out a professional and I do not have the option of doing so instead of her. Of course I know that nobody here can give a diagnosis and I am not looking for that. But since an official diagnosis is not an option right now and since she is scared to speak with people about this herself I came here: hoping to get some feedback, to see if some of the things she has described to me or that we experience together are similar to the experiences of the people on this forum.

For me personally it does not matter, if she receives a diagnosis or not. I want her to be happier (and the thought of maybe understanding herself better through an ASD lens has done that) and I want us to understand each other better. I was hoping that if people here feel like some of her and our experiences are relatable, maybe she would be less scared to talk to people herself.

But of course, once she feels like she wants to/is ready to speak to a professional, I will support that.

 

[Thinx]

Hi and welcome. Well, a lot of what you say sounds like experiences I ve heard from women with Autism. Why not stick around here and see if it's helpful. There's plenty here, including me, who have self diagnosed based on reading and research, and if you were to think about this 'as if' it's autism for a while and see how that works, there might be some useful learning.

Diagnosis is not always an easy route, especially sometimes for women, as the diagnostic criteria have been developed with an idea that autism is mainly a male issue, whereas it seems like in truth, women with Autism have been less noticeable, for various reasons perhaps due to gender differences in social conditioning. If you try for diagnosis, try to get an experienced clinician who is up to date and diagnoses adults regularly.

I hope the forums are useful for you both, perhaps your partner will make her own account too! Her views ideas and thoughts are very welcome here.

 

[LJ-Ripley]

Hi and welcome. Well, a lot of what you say sounds like experiences I ve heard from women with Autism. Why not stick around here and see if it's helpful. There's plenty here, including me, who have self diagnosed based on reading and research, and if you were to think about this 'as if' it's autism for a while and see how that works, there might be some useful learning.

Diagnosis is not always an easy route, especially sometimes for women, as the diagnostic criteria have been developed with an idea that autism is mainly a male issue, whereas it seems like in truth, women with Autism have been less noticeable, for various reasons perhaps due to gender differences in social conditioning. If you try for diagnosis, try to get an experienced clinician who is up to date and diagnoses adults regularly.

I hope the forums are useful for you both, perhaps your partner will make her own account too! Her views ideas and thoughts are very welcome here.

Thanks, I will definitely stick around.
The "as if it's autism" route is what we are doing right now. Just looking at our issues in communication differently and focusing on trying to understand each others way of communication better instead of assuming that we communicate the same way has already done us so much good.

 

[Au Naturel]

Autism does not necessarily present the same in women as it does in men.

As far as the sensory issues go, does she ever want to go into chaotic, noisy, and confusing environments? If you never go you don't know if you are sensitive.

I dislike really bright sun as well. But wearing sunglasses in the bright sun is not a specifically autistic thing, though. It can protect your eyes from UV damage which could cause cataracts. It makes the transition into a dark area easier because you can just take the glasses off. Once you get used to sunglasses you do become sensitive to bright light for a bit if you don't have them. These days I wear a hat with a broad brim and photo-grey lenses in my glasses for light protection.

Index and forefinger could well be a kind of a stim. Or not. Not all stims are big and obvious. Someone who has learned to mask well hides their stims or learns to do stims that nobody notices. But stims are not a requirement for mild autism.

If she doesn't engage in her interests very often and doesn't talk about them much, they wouldn't qualify as "special interests" in the autistic sense. But not all people on the spectrum have obsessive special interests. It is a manifestation of a subset of the population.

Diagnosis by the internet is a fool's errand.

Nobody here is going to diagnose her beyond saying it is possible but it could also be a different condition. No ethical professional would ever tell you more without an in-person interview and I'd recommend one who specializes in female autism. There are many who downplay the condition in women and even some who deny it.

 

[Finder]

As others have stated, we cannot diagnose over the internet, and are not qualified to do so. But some people self-diagnose.

Yes, your friend does sound like she might have ASD--autism spectrum disorder. She may also have other conditions such as social anxiety disorder. There are many conditions that share traits with autism as well as other conditions that are comorbid.

However, I am not quite sure of your goal. Are you seeking help for your friend or your relationship? If this is about your relationship, then you are on the right track to understand that there are neurological differences that can make relationships hard. I think if you are both aware of this, you should be able to compensate for those. However, if your friend is having problems because of her condition that is beyond that relationship, then you need professional help. That would start with a diagnosis. If you mis-diagnose you friends condition, you may be applying the wrong intervention to the wrong problem.

You may find this site helpful: Adult Diagnosis

BTW, I was diagnosed at the age of 56. You do not have to reveal your diagnosis to anyone. I found my diagnosis a great relief, but I also keep to a selective few.

 

[Tom]

I think people with ASD-1 often do not have all the typical symptoms. It may actually be very rare to have them all. We see a lot of variation among ourselves, even social active/comfortable autistics. That along with a match of many autism symptoms makes it certainly worth investigating.

Communication is the key I think in the NT/ASD relationship. Its a little like learning different languages. But also about accepting their are going to be quite a few differences in personality and how you wish to do things or live in general. Whatever you do, do it with fairness, equal give and takes. Both the viewpoints are valid.

Btw ASD/NT relationships can and do work. Quite a few of us here have been in very long term/lifetime relationshps with NTs. I have been married to one 35+ years.

 

[Alexej]

HI @LJ-Ripley and welcome to the Forums.

This is a good place to be with the questions you have. Do hang around a while and many look at some of the older threads where people have shared about their experiences of coming to diagnosis, and experiences of life.

Your friend is welcome to come and browse the Forum too, and see where her interest takes her.

 

[Magna]

Welcome. I hope this forum is helpful to you and to her. You're doing the right thing by researching. If your girlfriend decides self-diagnosing is as far as she wants to go, there's no shame in that at all. This forum is accepting and welcoming to self-diagnosed as well as professionally diagnosed people on the autism spectrum.

I believe it's important to identify as "self-diagnosed" if a person is in fact self-diagnosed, which is what you're doing, so thank you for that.

 

[OkRad]

Welcome. I would invite her here, too. It would be good to have her on the conversation. It is great that she knows you are here and consents, but it would be nice to hear her voice, too. You sound like a cool partner and I hope you guys make it.

 

[Pistachio]

Some of this could be autism/aspergers but some of it sounds like relationship stuff where you each have an idea in your head of how the person is "supposed to be", and they don't exactly fit that (unspoken?) concept. Better communication would obviously help even if there's no aspergers.

I'd just say that if you don't know the language, or not much, it's incredibly stressful to try to get through conversations without screwing it up so to speak. I'd never move to another country just because of that.

As for some of the other stuff, like leaving at 3pm, I'd probably be stressed in case there's a lot of traffic just a few minutes later, or just so I'm not keeping people waiting. And I'd also have the tendency to start doing something else, even if it was spacing out, if I had to wait, which might delay things further.

Bright lights, loud noises, could be, but it could also just be general temperament.

The pressing thumb/finger together: I learned that as a meditation technique, or a way to focus. I wouldn't call that stimming, or aspergers related.

Not knowing a specific word for an emotion, to me isn't "not knowing" an emotion. It's like artists know every color by name in the color wheel, I don't, but I still know emotions. And if you're upset about something but are just huffing around about it, I'd just guess it was something recent you're upset about too. I'm not a mind reader, so I'd need someone to tell me if they're upset with me, especially a boyfriend, well I'd kind of expect him to speak/talk freely about what's upsetting him. But that's just me.

It sounds like she's trying really hard to fit in with friends/community, and probably needs a little give/flexibility from you. Could be relationship stuff at least partially so maybe that's something to think about. Good luck!

 

[Alexej]

she feels VERY intense emotions but is unable to know which emotion(s) specifically she is feeling. She can be crying or shaking because she is so tense but is unable to identify her feelings in that moment.

On this aspect of your post you might want to look into alexithymia as a topic.
It has been discussed in here a bit and there is a lot more on the net.