Feeling Prickly-How I cope with social shutdown

I don’t eat tomatoes. Not because I’m allergic to them, but because they have this weird, slimy texture and bitter taste that makes them repulsive to me. But, that doesn’t mean I completely avoid tomatoes. I eat tomato sauce and salsa and I will even have a little bit of tomato on a burger. So, I will actually eat tomatoes, but not straight.

I feel the same way about socializing. I love people. People are great. People are interesting. But, days and days of just peopling causes my brain to slowly shut down.

Have you ever had one of those dreams where everything is in slow motion and even your speech is slow? I feel like this is what happens to me after having a lot of time socializing. I am speaking specifically of situations where I would have to observe social norms and put on a neurotypical mask.

People with Autism who are at the higher end of the spectrum are quite good at imitating neurotypical behavior. They do this by masking their autistic traits. This can work as long as they are not socializing for long periods of time. The longer the time, the more likely it is that they will eventually shut down or worse, melt down.

To use another analogy (because, I can’t get enough of them). It’s like walking around in shoes you like, eventhough they hurt your feet. I used to do this as a child. I had shoes that I loved so much, I did not tell my mom that they hurt and I actually wound up ruining my toes.

Long periods of masking mean I need to take longer periods to recover. I have come to describe this to my husband as being prickly. I get irritated and even my skin starts to hurt and feel raw, as if I had been rubbing it with sandpaper. If someone happens to call me during this time, it will be hard for me to make sense or answer questions. Sometimes, my exhaustion can lead to anxiety and I will start to hermit and dig deeper into my special interests.

Because I love people, and I would like have better relationships with them,  I have started to work on finding ways to minimize the burnout I experience.

Here are a few things that have worked so far:

Prepare myself mentally

If I know I am going to be with people the entire day, I take some moments for myself to do something relaxing. Listen to music, take a shower, go for a walk or dig into one of my special interests.

Give myself permission to check out

Sometimes I am having a great time with friends and then i start to feel the ache in my body that tells me my people barometer is reading on the high end. When I actually listen to this signal, I find an excuse to step away. Go to the bathroom, go to the car to get something, if available, talk to a  small child or animal (less socially demanding)

Find opportunities to use my special interests

Ask any Aspie about her special interest and you will probably get an earful! I am no exception, so I love to be in social situations where my special interest is quite useful and can save me from so much small talk. For example, since I love to draw, I will ask to draw people. People love that anyway. I also love languages, so having the opportunity to ask someone who speaks another language how to say things in his/her language is great for me and I am showing interest in them as well, so it’s a win/win!

Go mute

Sometimes, I am in situations where I can’t check out or use my special interests. So I decide to not speak or speak as little as possible. If people ask me why i am so quiet, I tell them that I’m just listening. Usually this is sufficient for them. Most of the time, in a group of people, the conversation will come around to something interesting and I will pepper in some comments so that I still look like I’m engaged.

Since I have started to become mindful of my shutdown signals, I feel like I don’t get as exhausted socializing and I have been able to do it a little more than before I was aware of my shutdown signals.

What strategies do you use to enjoy socializing?

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When things change


When I was 12, my family moved from New York City to Upstate New York. I remember showing some of the kids in my old school my new school in the glossy brochure. Admittedly, I was gloating a little. I even gave away two of my treasured Baby-Sitter’s Club paperbacks to a girl in my class. This was a big change, but a welcome one. Good riddance, noisy, crowded and stressful City!
Not all changes in my life were greeted with this much enthusiasm. In fact, I generally dislike change. This is another Autistic trait I am learning about. People on the spectrum are lovers of routine. Some may be quite rigid while others might be slightly flexible. Just about everyday, i know what I’m going to eat for breakfast. It will either be peanut butter and bananas, something I call sweet potato porridge or gluten free toast with coconut oil, peanut butter and honey. If I don’t have any of these things, I feel a little lost. I am willing to eat something else, but, at that point, I am feeling anxious and it is hard to think about what I will make. On these days, I may not eat until the afternoon and then I feel like my whole day goes off the rails.
All of this because I’m out of bananas? This is actually not something that I do willingly. It is a kind of a compulsion. It helps me to have a little control over a situation that could easily wind up in sensory overload. I am hungry and going into the kitchen after I have just awakened. The kids are also asking for food. I hear the sounds in the morning that disturb me like the school bus picking up neighborhood kids (my kids are homeschooled)  or the trash truck and other distractions that continue to up the stress anty.
All my sense levers are always switched on. It is hard to block out noises, smells, overheard conversations, things that brush against my skin, things that need to be cleaned or put away.
Having some things that are constant brings a certain calm to my chaotic life and relieves me of less worry about details.
For people on the spectrum, routine and resistance to change is about emotional survival. We would like to be flexible, but the world around us is constantly spitting out sensory information that we have to interpret. From what I understand, our brains take longer to deal with this information than neurotypicals. If we keep most of our lives pretty predictable, we don’t have to go through the trouble of processing new sensory information for routine tasks. I know what textures and flavors I will have for breakfasts and what hair will look like(because I cut it so that it always looks the same in all kinds of weather)
It doesn’t take much imagination  to fathom how a strong preference for––rather an obsession over routine––can lead to some uncomfortable situations.
I just faced one tonight. My family went to the lake with some friends. My youngest son, who is 10, saw some of the kids playing in the water and decided that he must do that. It was nearly dark, but he begged and pouted and worse, just crawled up into a pitiful looking lump in the middle of the deck. I then began to realize that I was probably being unreasonable. This was not about the fact that I did not want to walk back to the car with him to get his swim shorts. I just did not want him to go into the water. This was an unexpected thing and I had not mentally prepared for it.
This story has a happy ending. I did walk with him to the car to get his swim shorts. And he was happy to have a few moments of bliss playing with the other children in the water. But tomorrow, I will probably eat bananas or toast for breakfast.
What things do you do routinely? How do you react when your routine is disturbed?

Uncomfortable Shoes


I don’t remember the exact age, but when I was very young, I realized that I was different. Not different in the way that you discover your individuality, (e.g., “I like blue and Sally likes purple”).
This Difference was something much more profound. I was an observer of this world, a reluctant resident, but wanting so badly to learn the customs and fit in. I felt like an alien. I remember my mom joking about me being adopted and somehow it did not feel like such a negative thing to me. Perhaps, I would then find out the secret to why I have to try so hard to do things that others find easy.
When I was 4, I was diagnosed with Epilepsy. This seemed to explain my unusual behavior. My zoning out, my preference for naps rather than playing with other children. Most of my seizures were auras or simple partials that affected my emotions, causing sudden fear, anxiety and nervousness. I also had visual hallucinations, waking at night screaming because I saw things crawling on me. Yup, this made me especially weird. I remember a particular time falling asleep at a friend’s house and waking up screaming for her to get a huge spider off of me.
When I was 14, it seemed my seizures had calmed down quite a bit and I would be able to discontinue medication and even start doing some regular things. I got a job my first real job at Wendy’s when I was 15. But, my first job bliss died on day one. My manager would bark orders at us and we had to remember what he said. I remember feeling so overwhelmed having to remember what he said and the order of things and also keep up with orders that were scrolling on the monitor from the drive through. Once I finally got the hang of things with making sandwiches, they switched me to cleaning the dining area. The change in routine caused my anxiety level to go up and eventually my school work started to suffer. I think I lasted less than 5 months.
In the ensuing years, I would have many job experiences like that one. It made for a sketchy work record and an overall anxiety about working. Several times during my young adulthood I fell into utter despair. I would escape through daydreaming, imagining myself competent with friends, travelling the world.
Writing was another escape. i filled journals with annals of my teenage life, when I read it now, it looks more like a journalistic account.
However, my poetry was much more expressive. Words were things that were malleable in my mind. Somehow, I could use them to create symbolism that perfectly reflected my entangled feelings.
Later on in life, I would return to writing again and again as a way to work through problems or convey the reams of information I would tear through with a newfound interest.

Why should you care about these details? I am sharing in hopes that you might see yourself in some of these experiences. I know, reading blog posts written by Aspie women has helped me to see myself. After I started to understand what being on the spectrum meant, I have had more than a few ah-ha moments. I am sure I am not the only one who has done a survey of her life examining moments that once were confusing or even traumatizing and seeing it through the lense of an Autistic person. It can be powerful to redefine those moments, helping to redefine your self-identity
For much of my life , I knew nothing about High Functioning Autism. I had heard of Aspergers because my younger sister had been tested and found to not have it. I associated Aspergers with ADHD and I didn’t “believe” in either. In my mind, it was something that doctors made up to explain away weird behavior. Why couldn’t they just let people people be?
But, I did know a little about regular Autism, the non-verbal kind. My cousin exhibited  all of the typical symptoms. He walked on his toes, said only a few words as a toddler and struggled to make eye contact. In my mind, this was Autism.
It wasn’t until I wound up down a rabbit hole to solve someone else’s problem that I discovered my own Autistic traits.
My husband had been suffering with anxiety and depression and unable to get quality help. I was frustrated. I knew something was off and there was something that was not being uncovered. Somehow, I am not sure how, Aspergers popped into my mind. I had come across it I think a year earlier and discussed it with him and he said, “That’s definitely not me”. This time, I dug and dug and dug and even took an online questionnaire in his behalf. The more I saw, the more I knew this was my husband. Once I showed him the information I found, he took some time to look through it. When I asked what he thought he said, “If this is me, then it is also a lot of other people I know and it is you too”
I actually got irritated and a little angry because I thought this was about fixing him, not me. However, once he showed me the traits of Asperger females, I could not deny it, even to myself. I knew that I was Autistic and I was 39 years old.
My first reaction was sadness. All this time, I had been a mission to fix myself, to fit in, to talk myself out of feeling so afraid and weird and anxious all the time. I don’t know if I said it out loud, but it the midst of tears, it was loud and clear, “I can’t fix this!” There was also sadness when I thought about how I this information would have been so much more helpful to me when I was 16!
That grief lasted for a few weeks, then I started to settle into my new role as Aspie Advocate, eventually converting my younger sister who had previously received a negative diagnosis. However, there were days, many days, when I just wanted to not struggle so much. My ingrained tendency to fix problems reared its ugly head again, leading to more despair. It was almost as if I had been grieving a death. The death of the person I would not become. It had never been possible. It is like saving all your money to buy tickets to a concert that was never scheduled.
I would like to say that now I am over the sadness, but it crops up every once in a while. Perhaps it will, even with an official diagnosis. I had convinced myself that it didn’t matter whether or not I got one, but it would be nice to have the confirmation of what I know in my heart of hearts, but still have some trouble accepting.
Are you still undiagnosed? Does your diagnosis status affect how you live your life?