Tag Archives: Alexithymia

Autistic Confessions – My Own Feelings Are a Mystery to Me (If I Don’t Write)

Believe it or not I suffer from alexithymia. I have taught myself to check in and figure out how I feel but I don’t do it naturally or automatically.

Before I started writing I never knew how I felt. I had feelings, but to me I was good or bad on a sliding scale. Most of the time, unless I check in or are on one extreme or the other I don’t know how I feel.

Mindfulness has been very helpful to me, constantly scanning my body and reminding myself to pay attention and be in touch with what is happening inside. Awareness was only half the battle for me.

Being aware of my feelings and putting things into words are two very separate skills.

I’ve been writing for years. As a child I wrote rich fiction, always imaging myself as the main character, playing out social situations through my stories.

The older I get the more I crave facts than fiction. My wiring has also changed. Personal journalism has always been helpful to me.

I don’t think that my thoughts naturally flow into words unless I am writing, so when I have a lot on my mind I write often. Sometimes I write things in my head, over and over again.

When I get to the page the concept erupts revealing pieces of myself that I wasn’t even aware of. I surprise myself every day.

 

Autism is Full of Misunderstandings

Autism is marked by impaired communication abilities so it would make since that Autistic people often feel confused and misunderstood.

I don’t pick up on subtle social cues and hints. If you don’t tell me something directly, I’ll miss it. If something is implied I might not catch it.

Your annoyed face may not be registered in my brain – so if I am ticking you off I probably won’t know until you blow up in my face. If that happens I am completely caught off guard and have no clue what I did wrong.

I sometimes process things on a delay. I think it’s because of the amount of information I am able to take in at one time. There is so much to process that my brain saves some information for later and I may not process it for seconds, minutes, or days. This makes for inefficient conversations.

I have alexithymia and inappropriate affect so my face may not always be appropriate for the situation or conversation. Sometimes I laugh when people give be bad news. Apparently you should NOT laugh when someone tells you their mother has just passed away.

People often misunderstand my intentions. When I am too quiet people think I am hiding things and when I talk too much I am “selfishly” dominating a conversation. I don’t mean to do either of these things though.

When I am quiet it is because I lack confidence. I am painfully aware that I have trouble with timing in conversations. Sometimes it is easier for me not to talk so people don’t think I am rude.

When I am relaxed and with friends I tend to talk too much and over everyone. All my observations are from my point of view because I can’t take other people’s perspectives easily which makes me sound self centered.

Conversations are like a chess game where I can’t remember the rules. People think I don’t care to talk or to listen but really I just don’t know when I should talk because unfortunately – Autism is full of misunderstandings.

 

Am I Ready for an Autism Diagnosis?

One of the most common emails I get from readers revolves around one question. People reach out to me asking, “should I get my child diagnosed?” or “should I get diagnosed?”

Unfortunately I can not answer that question.

The decision to seek out an Autism diagnosis is a very personal one and you must search inside yourself and look at your own personal circumstances to decide if getting diagnosed is right for you.

Just because you are not ready to get diagnosed today does not mean you will not be ready to get diagnosed in the future.

I am diagnosed because getting a diagnosis eventually was right for me, but when I first discovered my Autism I was not ready to be diagnosed right away.

At first I was in denial and did not understand Autism. I was not ready to talk to a psychologist because I was still lying to myself that my symptoms were non existent or that there was some other explanation for them. Autism seemed so final I was not ready to accept it.

When I started to think about diagnosis I quickly realized that there was a very limited pool of doctors who were qualified or even had experience with adult women. None of the adult Autism doctors I found took insurance. If you do not live in or near a big city you may be taking a long drive to see a doctor.

Getting an adult Autism diagnosis can be expensive. I’ve had people tell me they paid out of pocket $800-$5000 to get diagnosed. Because a lot of the Autism specialists are out of network, insurance companies will often leave you with the fees.

Before I started reading about Autism and talking to other Aspies I had a hard time describing the feelings and things that were going on inside my body. Reading about Autism was like unlocking a key that let me start talking (mostly typing) about what has been going on inside me my entire life.

I have alexithymia. It is part of my Autism that makes it hard to describe my Autism. I have had to teach myself to describe my feelings because if I don’t consciously ask myself how I feel – I don’t know.  Before I started asking myself this question I never would have been able to explain what I was feeling because people always told me how I was feeling growing up.

People told me the wrong things about my feeling sometimes and because of my alexithymia I believed them. Because of this some of my feelings and emotions got confused. I needed to untangle this mess before I could accurately talk to a psychologist about my Autism.

Once I had finally straightened all of those things out I felt like I was ready for an Autism diagnosis.

I journal a lot and that has helped me tremendously in life. People with alexithymia should write. It helps us work out our feelings.

I took a 10 page paper to my psychologist explaining my life story without using any of the Autism terminology. (Doctors seem to be put off by laypeople who sound too scientific. They think we are up to something when we use big words.)

The doctor tested me and I answered her questions honestly. I was extremely nervous the entire time – afraid she would come back with a wrong diagnosis.

After our first meeting I had time to think on her questions and sent her another five page paper further explaining things I could not express face to face.

The way she had asked about stimming had confused me and I had under expressed how much stimming I actually do. (I need questions asked the correct way or I get confused sometimes.)

If you can get your doctor’s email address or bring in typed papers I would STRONGLY recommend doing so. Because I take in information and do not process it right away, sometimes on the spot conversations are impossible. I made a point to mention this to my doctor.

Tell your doctor EVERYTHING that you have trouble with. Make a list.

Autistic burnout (sometimes called Autistic Regression) is a real thing. All of the sudden all of my childhood sensory symptoms were back and worse than ever. It seems like stress and change can have a huge impact on this.

In the end getting a diagnosis was right for me when I started having trouble coping with the real world.

My diagnosis protects me from liability if I ever have a meltdown in public or have sensory problems that cause confusion. It lets me ask for small accommodations at work – like sitting in a quiet spot with natural light.

Now that I am diagnosed I can ask for things – small things that were refused before – and people are supped to give them to me.

I won’t ask for much. I don’t want to take advantage or draw extra attention. More than anything I just want to be comfortable in a world that was not built for me.

 

 

Ask an Autistic – What is Alexithymia? (Difficulty Expressing Your Emotions)

I was VERY excited when I logged onto YouTube today and saw that Amythest Schaber had posted a video. This video goes over something that I have always struggled with and have never been able to express.

I suffer from extreme anxiety – however I do not always know how I feel. My body is going through VERY intense symptoms physical symptoms of anxiety but mentally I tend to be unaware of the anxiety building.

I have a very hard time with cognitive empathy but when I am near someone who is feeling strong emotions I often feel their feelings inside me. I do not like to be around people when they are having strong emotions.

Sometimes someone else’s emotion may influence me without me even realizing my mood has changed. It is wild how it creeps up. Mindfulness and writing help me. I have to make an effort to pay attention to what my body is doing.

Please check out Amythest Schaber on Youtube and subscribe to her for more GREAT content. I can take NO credit for her video.

See video HERE!