A New Start

The desire to please other people is a potent way to distract yourself from what you are feeling. ~ Gary Zukav

Autism does terrible things to relationships. Especially undiagnosed autism. The most damaged relationship was the one I had with myself.

I was trying to make my life work. I was also trying to make my husband’s life work. (Try being responsible for two adult lives at once.) I was being a mother, a translator, a mediator, a psychologist, an anthropologist and a job coach. All while unknowingly being thrown into a foreign culture with a foreign language (Autism). I was learning while I was teaching. Every moment of my life felt like survival mode, because that is where he was. No rest from the fight or flight. None. Except when he went to sleep. Which I would at times hold my breath until he did. Then I could remember that I loved him.

The rants, the rages and the meltdowns – this was my every day. I had to shut off my own emotions to keep from sparking more.

When I got to my 30s, I had been doing this for a while. I was worn down. I had nothing left for anyone else. Hell, I didn’t have anything left for me. Migraines,  pain, joint dysfunction, depression… I was barely getting to work and playing music.  (Music and teaching music was the only thing keeping me alive.) It became obvious that I couldn’t continue relational dynamics in the manner I had before. My responses to crises, traumas, and happinesses had changed. I couldn’t fulfill my relational obligations. So what inevitably happened was isolation. Just what I didn’t need.

Or so I thought.

It was through that isolation that I started to get acquainted with myself. Without input from how others saw me, I became more clear on the me who was. The quieter I became; the less external noise I experienced, the more I could hear the small voice of I Am.

I wouldn’t have known I was in that state, and I couldn’t have written this if we hadn’t tried the gaps diet. Now that his autism symptoms have disappeared, I have gradually gotten a life and given his to him.

It has been most difficult to turn my emotions back on. They were buried under years and years of non-expression. With the help of friends, who probably don’t know they are in this role, I’ve opened more and more. Such freedom! (I love you friends!)

If you can relate to this message, know that you are not alone. If you have been a “victim” to my absence in the past, know that I was too. It’s time for a new start.

Happy Robot Coaching In Person!!

That’s right!

Just to let all you Happy Robot Fans know! 

On April 24th, 2014, Happy Robot Coaching (Michelle and I) will be speaking at the monthly meeting of the Autism OKC support group starting at 6:30 pm. 

We will give a talk on living a life with autism, how to interact with your high functioning autie, living while married to an autie and many other FASCINATING subjects related thereto.

So, join us on April 24th at St. Luke’s United Methodist Church at 15th & Harvey in Oklahoma City for an informative and fun evening with your’s truly, Happy Robot Coaching!

See you there!

~Mark @ Happy Robot Coaching

The Cake and the Icing Too

I liked Mark for 19 years, through the autism, even before we knew that’s what was going on. The last 9 months on this diet, being able to connect with him, has been pure gravy. ~Michelle

Happy Robot Coaching Speaking at Autism OKC

Attention Happy Robot Fans!

On April 24th, 2014, Happy Robot Coaching (Michelle and I) will be speaking at the monthly meeting of the Autism OKC support group starting at 6:30 pm.

We will give a talk on living a life with autism, how to interact with your high functioning autie, living while married to an autie and many other FASCINATING subjects related thereto.

So, join us on April 24th at St. Luke’s United Methodist Church at 15th & Harvey in Oklahoma City for an informative and fun evening with your’s truly, Happy Robot Coaching!

See you there!

~Mark @ Happy Robot Coaching

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

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

Driving While Aspie…

Learning to drive was not easy for me. I took Driver’s Ed in 10th grade in 1984-85. I learned to drive in a city much bigger than Oklahoma City which was not laid out like graph paper (Charlotte, NC). Then, I spent most of my driving years in a city of 5.5 to 6 million people (Atlanta, GA). While taking Driver’s Ed, I found that I scared everyone in the car that rode with me but I didn’t know why. I failed the driving portion of the test the first time I took it. My mom was frustrated and so was I. I didn’t know the reason I failed then. To get me prepared to take the test again, friends of our family would ride with me and give me pointers on my driving. I remember scaring them as well. I would turn left abruptly too close to oncoming traffic. My tutor was white-knuckling it and screaming at the top of their lungs through the turn.

Years later, I was still being told that I was a scary driver. Just a year ago, my sister reminded me that I was always cussing and flipping off other drivers whenever she and I went somewhere together. Recently, my mom told me that I have always been a terrifying driver. She said I was horrible to ride with. Over the twenty years of our marriage, my wife has done most of the driving. Whenever I have had occasion to drive with my wife as passenger, she tends to experience my driving more as a ride in an amusement park, somewhat akin to a roller coaster or a tilt-a-whirl!

The examples above show, as an Aspie, my driving abilities have TERRIFIED those who have ridden with me. But the examples aren’t really the point of this article. The following are reasons why I drive like this.

1. Aspies have trouble driving because we are not as aware of our surroundings on the roads. A disciplined awareness is necessary in driving to evaluate road conditions and traffic situations. Training Aspie student drivers to be more aware is simple. Have them watch movies of traffic situations or observe actual traffic at an intersection and then explain what they saw. Then ask them how they would deal with each situation. Keep training them until they seem comfortable and satisfactory results have been achieved.
2. Aspies aren’t very physically coordinated so our motions in driving a car tend to be abrupt and jerky. Getting us to be graceful in our movements just requires an NT driver to observe us and to help us adjust by small degrees. Instead of yanking the steering wheel to make turns, we can be taught to turn the wheel using the hand-over-hand technique.
3. The Aspie’s single-focused mind can cause overwhelm when required to multitask. Because of this hyperfocus, managing the multiple tasks involved in operating a car can be overwhelming for new driving students. Even at 45, I drive an automatic transmission because it requires less from me, mentally and physically, than a standard transmission. The key is allowing the Aspie to master each of the major functions of driving one at a time and then putting them together into a final product.
4. There is a lot of fear built up in us because many of us Aspies have a perfectionist streak that will not allow us to make mistakes. To counter the perfectionism and fear of making mistakes, the Aspie driving student must be continually reminded that mistakes are perfectly acceptable. The Aspie driving student can be taken to a large empty parking lot, and with supervision, be allowed to drive at leisure until they are comfortable with the basic operation of the vehicle. Strong emphasis needs to be placed on creating a ‘safety net’ which consists of getting across to the Aspie driving student that ‘mistakes are perfectly acceptable’ and that ‘whatever happens is okay’. Once the ‘safety net’ is in place, the above three factors can be addressed starting with awareness.
5. Aspies require more time to learn something, especially when that task requires physical/mental multitasking. The more complex a task is, the more our brains analyze it to comprehend the information. This analytical process requires more time than is usually given for mastering something. By breaking down the process into smaller tasks, the Aspie student can easily master each piece of the project.

Even though driving is a complex task for Aspies, following the above guidelines can make the process of learning less stressful and easier to manage.

~Mark

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

Illness in Aspies Part II

As an Aspie, I remember working through illnesses such as strep throat, colds, even viral gastroenteritis until the gastroenteritis actually did catch up with me. I could work double time or even triple time for hours then go home and come back to do it again then next day. Rarely did I need to call out from work. I even worked a straight 33-hour shift and was only tired enough to sleep for just 8 hours to recover.

This past week, however, I was WOEFULLY unprepared for being sick as a newly-minted NT. When I was sick as an Aspie, I almost never complained about it. Most times, Michelle didn’t even know I was sick.

BUT, as a new NT, being sick is a whole different drag. I actually could feel more pain. I had pain in joints and muscles. It wasn’t strep throat, but my throat felt as sore and scratchy as if it were strep. Michelle used to comment, in years past, at how sweet I was when I was sick. She used to say that most people are grouchy and testy when they’re sick. And, they complain all the time but why wasn’t I? I didn’t know the answer then.

This time around, however, I was totally out of it. And, not Aspie unaware. But, I didn’t even know that my personality had changed to one of testiness, contempt and downright rudeness. Michelle got upset at me and I couldn’t figure out why. Now, I realize that I was being overwhelmed by all the emotions that come with pain and sickness. I realized that I was out of control in my mood. I didn’t like that at all. I don’t like not being in control of my thinking and perceiving. The sickness really warped my perception. I didn’t even know I was skewed. But, sure enough, no matter how much I thought I was seeing things in perspective, I finally saw that I was being difficult, something I rarely was when sick as an Aspie.

This diet has been one interesting experience after another. My autism is definitely on the down turn, hopefully, for good. I think life will finally be a lot more interesting, effective and realistic than the previous 45 years as an autie.

~Mark