Bridging the communication gap between high functioning autistics and neurotypicals.

Posts tagged ‘autism’

What Autism Feels Like to a Neurotypical

The past two days have reminded me what autism feels like to a neurotypical (NT). Mark had not been getting good sleep and may have ingested some sugar, sending him back into Aspieness. It wasn’t a complete reversal of NTness, but enough to make my world uncomfortable. Enough to remind me of the pain I endured all of these years.

I know there are a lot of people out there who never get a break from their autistic loved one. You don’t know what a break feels like and may be angry that I’ve had one after 20 years. You may not even believe that Mark is autistic or that a diet can reverse autism. Believe what you wish as I tell you my experience.

Autism
It is never happy.
It is never peaceful.
It is always searching.
It is never finding.
It is forever frustration.
It is never satisfied.
It is never present.
It is never connecting.

I feel bad.
Very, very bad.
This person is in agony.
I cannot help.
I try anyway.
I wear myself thin.
I have nothing.
I give more.

Autism doesn’t know.
It can’t see.
It has no eyes.
It has no ears.
I don’t exist.
It’s not their fault.
It’s just what is.
I hate it so.

~Michelle

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Connotations and Communication

How do you use connotations in your communications? To give you a sense of the autistic world vs the neurotypical world, let’s look at a fictitious text, without emoticons or punctuation: “where were you last night”. If I just read the words, I would answer where I had been; the autistic answer. But in our complicated NT world of emotion, I have to consider who is asking, what had happened in the past between us, and the possible connotation(s) behind the question.

Let’s say the person texting was my band leader. The question could be expressing genuine concern over my well-being. It could also be surrounded by annoyance and disgust that I missed a rehearsal. Perhaps there are sarcastic undertones, hinting at being let go. I could go on and on with the emotional possibilities behind the text.

When communicating with autistic people, we must remember that they are only getting the words of the text. To communicate better, we have to say our connotation as well as the words. Our new text would be, “I am really disappointed that you weren’t there last night. What happened to you and why did you miss?”; “I am really angry that you missed rehearsal without telling us. We are considering finding another person. Where were you last night?”; or “We were really worried that you missed last night. We didn’t know what happened to you. Where were you?” These sentences are tedious, but that is what is necessary to avoid confusion with your Autie. In my experience teaching NTs and Auties, I use many, MANY more words with the Auties. Emotions are a much more efficient way to teach, but only if they can be received.

~Michelle

Shifting Relationships

Since Mark has lost his autism, I have been forced to ponder relationships. My relationships. For 19 and a half years of my life, I relied on emotional support from people outside my marriage. That’s a lot of years in a dynamic, depending on how long each person has been in my life. And looking back, some of the defunct relationships were probably overwhelmed by my emotional need.

So now that I’m suddenly getting emotional support from my husband, ALL of my relationships are changing. I feel the shifts. I’m calling less, texting less, and emailing less. I even feel myself responding differently when I do have contact. My entire life has shifted in a short period of time.

The shift has been wonderful for me as the last 20 years have been painful. Between trying to keep Mark happy and finding an emotional outlet for myself, I felt like I was alone. Always fighting an uphill battle. To suddenly have a Mark who understands his world AND my world is a pleasurable shock. I’m lost in this new world.

So dear friends and family, I’m sure I will come back around at some point. I wouldn’t have allowed you in if you didn’t mean something to me. Right now I’m overwhelmed by a new life… and I’m loving it.

~Michelle

The Case of Oklahoma vs My Autie

There have been many changes for Mark and me since moving to Oklahoma almost 3 years ago. An autism diagnosis for Mark is one of them. Something you might imagine would explain many difficulties, one being communication. Mark had plenty of trouble with that in Atlanta, but Oklahoma has proven to be almost impossible.

I’m not an official anthropologist doing research, but in my own experience, I know I did not feel free to express myself emotionally in the East. When we got to Oklahoma, I would go to a grocery store and the checkout person would tell me their life story with emotions attached. I’d be getting gas and the person next to me would start talking to me as if I were his long-lost friend. (I was afraid I was going to be hugged.) I’d be walking along the canal in Bricktown and passersby would see my Braves t-shirt and ask if I was from somewhere else and then proceed to tell me about all of their trips through Atlanta, with emotion attached.

After being here for a while, despite the friendliness and good heartedness of the people, I find it is very difficult to get into their inner circle. There are mazes of massive walls that have to be negotiated before you may enter. Many of the walls are emotional and you have to guess or intuit how to go round. The difficulty is that even “professionals” communicate in more emotion than words. Entire concepts can be shared without a word spoken. I have experienced feelings of people AFRAID to say words. How does one get information since telepathy hasn’t developed to a level required to know, say, the time the concert starts?

I say all this to bring you back to the point of Mark’s autism. From the beginning he has called this place a “freak show” and a “circus”. Please understand that this is coming from autism with no way to negotiate in such an emotional climate. He can ask a point-blank question and still not get a verbal answer. This has been infuriatingly frustrating for him.

How does this emotive response affect autistic kids in the school system? Autistic people canNOT learn via emotional teaching. Are Oklahoma teachers taught to teach verbally to these children? Are Oklahomans capable of being verbal? I think so, but it needs to be brought to their attention.

Let’s look at the word “propaganda” for a moment. I met with a lovely Aspie who uses this word for the pamphlet that comes with her tea. We all laughed because it was a funny use of the word. She told me that she uses the word because it makes people laugh, but she didn’t understand why. I told her she didn’t understand because she doesn’t know the emotional message behind the word. Her reply was, “Oh”.

All words have an emotional definition. When communicating with an autie, one must spell out these emotional definitions in the form of words. Yes, this is a tedious way to teach, but that is the ONLY way to teach autistics. We must learn to verbalize our emotions if we wish to communicate with the autistic culture. Are there classes on this in college? I doubt it. I learned through trial and error and a steely determination to get my point across.

I’d say, in the case of Oklahoma vs My Autie, My Autie loses. We, in the Oklahoma autism community and beyond, need to make sure our communication is as clear and concise as possible and we must spread the word to others. We all want our Auties to win!

~Michelle

From Meltdown to Cooperation in Twenty Minutes

I had an autistic trumpet student whom we will call Joe. Joe frequently walked into his lesson in a foul mood, mumbling obscenities, and griping about hating trumpet lessons. He was in 6th grade and was the most difficult student I had had up to that point. Most of the time I coerced him to play for at least 20 minutes of the 30 minute lesson. I remember his utter disgust when he discovered that I didn’t have perfect pitch – this woman is teaching ME?? Autistic children can be very difficult to take when one is an extra sensitive neurotypical*.

One day Joe walked in screaming. His dad looked at me, shrugged his shoulders, and walked to the waiting room. “I hate (expletive) trumpet lessons! I (expletive) hate you! I want to kill you! I’m going to burn this building down! Don’t talk to me! I hate you!” This went on and on. -This dad expects a lesson from this??- I had no idea what to do.

It suddenly occurred to me to do what he said. Don’t talk to him. So I didn’t. After 10 minutes of ranting vehemently, he began to slow down. After 15 minutes he started looking at me and wondering what I was doing. After 20 minutes he finally asked, “Why aren’t you talking to me?” I said, “Because you told me not to.” A few more minutes went by and he said, “Ok. I will play now. What do you want me to do?” I was FLOORED! He had become a sweet, malleable person. We had a productive 10 minutes and never had another lesson that horrid again. There were times he would come in grumpy and I’d ask, “Do you need me to not talk to you for a bit?” He’d always say, “No, I’m ok.”

This scenario made me aware of how my emotions affect an autistic person. I didn’t just stop talking to Joe, I turned off my emotions. My autistic husband explains that any emotion causes confusion and overwhelm. That confusion leads to obsessively trying to figure out why they are confused. Then when more emotion is thrown in (whether positive or negative), it short circuits the brain, causing rage, stimming, meltdown, withdrawing, etc. In the situation with Joe, it was very difficult for me to pull my emotions inward, but I chose to find a “happy place” and leave that “room” for a while. This shut down the emotional feed to Joe and he was able to regain his non fight-or-flight brain.

Most of us think that our emotions ARE us, but it is a learnable skill to separate from our emotions. Like learning a musical instrument, it just takes time. If you would like to try this with your autistic loved one, but have no idea how to separate yourself from your emotions, contact us here or at happyrobotcoaching@gmail.com.

~Michelle

*Neurotypical: “a term coined in the autistic community as a label for people who are not on the autism spectrum.” http://en.wikipedia.org/wiki/Neurotypical

Curing Autism? … We’ll See!

Getting It!

Okay, well, kind of… Let me explain. I’ve known I’ve been different since I was very small. I just didn’t know why. I started kindergarten in Michigan in 1974. I don’t remember anyone’s face or any of the kids. I didn’t play with anyone. I usually just sat and read books. It didn’t occur to me then that I was different. I thought life was going to be fun! You know, with all the reading and learning and being alone. To quote a Bible verse, I “was cut off out of the land of the living” and didn’t know it and didn’t care!

So, by my late thirties, I started noticing that I was feeling only two emotions, fear and anger, and only then when they were extreme. I heard other people talk about all of these other emotions that they were feeling but I had no clue where these emotions lived, died or had their being. All these humans I worked around positively gassed on about feeling this way and that way but I never really wondered about it. To me, this was some fictive reality that they conjured up for their sanity. Speaking of fictive, not being able to feel emotions is why I don’t like fiction. There’s just no draw for me in fiction. Even science fiction is drama-less unless it’s a movie. Enough about that now.

Okay, so, being in love and being married. I meet this woman who seems to have an instant attraction to me. The only reason I know there is an attraction is because she tells me, “Hey, I like you! You’re interesting!” I never had that happen to me before. Notice I didn’t say I felt anything. I said that I heard someone say, “I like you!” That’s all I had to go on. To keep this story from being longer, I’ll let you know the punchline now. We got married!

The cruel joke, however, was that Michelle spent the next few years realizing that she was married to a strange, eccentric brick wall of a human being. I had trouble figuring out why Michelle liked me so much. I would constantly ask her, “Why do you like me so much?” Her answer was usually something platitudinous like, “Because you’re interesting to me!” or “Because you’re you!” What I wasn’t realizing was that she was communicating through words her feelings about me to explain why she was attracted to me. I DID NOT understand that emotional attraction alone could be enough to hold someone’s attention. I would continually bug her with the query, “Are you going to leave me?” because I couldn’t and didn’t ‘feel’ her attraction.

In July of 2011, I started suspecting that something was wrong enough to explain my lack of success in life. After taking the Adult Autism Quotient test, I scored 37 out of 50 (74%). In July of 2012, I got diagnosed with Asperger’s Syndrome and Obsessive Compulsive Personality disorder. After getting a proper explanation from the psychologist of both of those things, life started to make a little more sense, past and present.

So, I think I’ve made my point clear here. I didn’t get any emotional cues, signals or messages across the course of my 45 years. I could see people acting emotionally but I never could ‘feel’ the necessary emotions that conveyed the rest of the message they were trying to get across to me!

ENTER (from stage left): JULY 2013….

In July of 2013 (too much happens in July, dang it!), Michelle reads about the GAPS diet. While I was initially skeptical, I read the pages she had been reading. I knew from all of the biology coursework I had taken that the intestinal lining was where 99% of all our nutrition was absorbed. So, I knew that fact was right. From Molecular and Cellular biology, I also knew that most any important chemical compound in cell-to-cell communication in our brains was made out of proteins. Finding out that if our intestines were damaged by what we had been eating or taking as medicine, then we weren’t getting the proper nutrition for our brain cells was a no-brainer, (Ha!). This diet’s theoretical principles made a lot of biological sense to me. Notice, here, that I was logical about my decision. I didn’t base my decision on emotional considerations at all. I just thought to myself, “Logically, this makes a lot of sense. If I’m not getting the proper nutrition because of a damaged intestinal epithelium then, of course, my central nervous system won’t be in optimal health either”. So, we started the diet.

Being a professional cook for most of my working life made putting together the required broths easy. No problems there. In fact, it was a piece of cake. I even made a pate of liver since organ meats are on the diet that was phenomenal! I even showed a handful of people how to make the broths themselves. They have discovered the benefits as well!

But, enough about that. Does this diet cure autism?

What I’m gonna ask is “Does this diet cure MY autism?”

If autism is a social communication disorder characterized by the inability to ‘read’ other people, the inability to initiate and maintain relationships, the inability to capitalize on social networks and interactions, then, YES!, I am autistic. If autism is also characterized by stereotypical repetitive behaviors such as rocking back and forth whether sitting or standing (like I always hear from people “Stop that, you’re making me seasick!) or compulsively arranging things in a certain order (like arranging books in order of color according to lowest to highest wavelength of the visible light spectrum like I used to do and still do) then YES!, I fit those traits as well.

Now, however, I have seen CHANGES! The most important one is this. Since about three weeks after starting the diet, I have been able to feel a transaction of energy between myself and other people. Usually, when this happens, it changes my own emotions about what just happened or about the person I just interacted with. When this exchange happens between me and Michelle, I usually am COMPELLED to smile! Even the thought of Michelle FORCES me to smile! Before, that thought was almost always a simple acceptance of Michelle existing. In other words, a fact. That’s all. When this exchange happens between me and another person, it all depends on how the interaction goes. For instance, when someone yells at me now, I immediately feel my own anger at the injustice (instead of two days later) and immediately respond in kind instead of overboard! That means I can defend myself now after 45 years of running and hiding! That’s awesome!

Michelle can now actually read me! Before, I was very unpredictable to her. She never could tell how I felt or thought about a particular subject. She had to ask me every time. Now, with just the slightest sensing on her part, she can immediately tell how I feel. And, I actually immediately put across enough emotion so that she can read me. That’s strange! Very strange!

But, there have been hitches in the git-along. At this stage of the diet, any deviation from the prescribed foods can send me into relapse. It can take three to four weeks to get back out of it. What’s frightening about it is that the autistic symptoms come back even stronger than before. They make my life very difficult when I have relapsed but the good thing is I can come back out of it with the right foods, probiotics and motivation (which I’ve rarely had before).

Will this cure my high-functioning autism? I have to wait another 18 months or so for the healing process to complete to know whether I can be well enough to say that I have been cured. However, the changes that I’ve seen in myself and the abilities I have in reading others on a very basic level have finally let me know that I’m not alone in this life and I can now tell that other people actually care a great deal about me.

I will keep posting about my progress as I go along. You will know how I’m doing. Michelle and I are here to serve the autism community in the ways that will benefit us all the most. Please look us up here at Happy Robot Coaching. We’re always happy to help!

Happy New 2014!

~Mark

Welcome to Happy Robot Inc!

We specialize in communication between neurotypicals (emotional beings) and high functioning autistics (logical beings).

As a high functioning autistic/neurotypical couple, we have a lot of experience in communicating across neurological barriers. We have formed this organization in the hopes that we can help other NT/HFA people understand each other. We are available to answer any questions you might have about your NT or HFA.