It is not uncommon knowledge that those with ASD are inflexible with certain word definitions and meaning, but it’s important to also realize those without ASD can be inflexible as well. The words being social, socialization, and socializing are among the words I cringe at when I hear people talking about them in relation to a person with ASD.

I wanted to write the definition of those words here but seeing that there are several (5+) definitions versions of each I will not. I cannot even write the most relevant definition to what I mean bc in the definition there are more words that would need defining…interruptions of a definition are largely based on perception and thinking styles. So for the sake of this blog I want to share with you one of my interpretations of the word socializing.

For me socializing can just be doing an activity in the same energy space as another-verbal interaction doesn’t have to occur, nor do we need to be working on the same project or activity. I like being with people. I like interacting with people. My ways of interacting may not look like your ways all of the time, but I am still interacting and I am still being social. From my experiences when “socialization” is forced many times the person with ASD is trying so hard to do everything right and real socialization becomes impossible; it turns into a theatrical act and the person with ASD once again is hidden behind a mask.

Many activities others find as “social” I find as antisocial because I am not in an environment where I can be me to be social. This can leave me feeling sad. I have found a few places where I can truly be social and one of those is Zumba class at my gym. I wrote a journal about this and shared it with the instructor who asked if I could also share it with the class. Today, I want to share it with you but first let me explain a little about my class. It’s more of a Zumba gold class-so for older folks. The tempo and moves are more tame and the majority of the participants have 30+ years on me. I enjoy this class bc I can actually participate without people giving me weird looks for my dancing despite the very wide birth they always give me (for those who have never seen me do Zumba…well I do it Kim style-jumping nonstop, arms flailing, feet going to their own beat/tempo, strange face contortions, spinning more than instructed, etc…).

Now for my journal and what I shared with my class….

Zumba is more than just a fitness class, it’s a time and place for me to just be me!

Hi! My name is Kim and I am the girl in Zumba who always likes to jump and twirl. I am sometimes afraid of bumping into people because of not always knowing where my body is in time and space. I am usually dancing to my own beat and I wear earplugs because the music can be too loud. I want to share something I wrote after class one day…
socialization
“Zumba class is the one place where I feel as if I can be completely myself. I can let go of all expectations. I can move to my own beat, freely. Unrestricted. I can twirl and jump and stomp. My energy intermingling with those around me. I dance with everyone. No words are said. no eye contact is given. Speaking freely through our movement and through our spirits.

We are jumping and flapping our arms. We are doing it together. In those moments I feel as if they came to visit me in my world. I feel accepted and I feel included. I am sad when the music stops and they leave and I am once again alone in their world.”

Let me explain…
socialization
Before and after class people are talking and chatting with each other. I want to be friendly and join in. I want to get to know people, but I can’t. However, when the music is going and we are dancing I am talking with you and you are talking with me. We do it through our movements and I feel happy to be a part of the group.

You see I have autism and sensory processing disorder (SPD). This means that it is often difficult for me to “socialize” because the environment can be too much for me to process. I can lose my ability to speak or I can have extreme difficulty getting my words from my head to my mouth. I want to engage in conversations and I like talking with people, it can just be really hard for me to do.

Zumba offers me the chance to get to know you and I want to say thank you for that

socialization

I recently read an overwhelmingly negative article published on a support site for NT (Neurotypical) spouses living with an ASD (Autistic) partner and felt compelled to pen a response. The article—written by a woman who didn’t even have the courage to sign her name—views life in an ASD partner as victimhood, painting a bleak picture of the future, even going so far as to insinuate that NT spouses are subject to PTSD, injury, and major health complications because of their autistic partner. The author proclaimed doom and gloom and ended by suggesting NT spouses find the courage to end the relationship. All in all, not very positive or enlightening.

If your spouse is autistic, then he/she has a disability. After all, that’s what autism is—a disability. If you had a child with cerebral palsy, who was confined to a wheelchair, would you end the relationship because your child will never walk? Of course not. At least, I hope you wouldn’t. It’s not the child’s fault they are paralyzed from the waist down. After all, they didn’t ask for a disability. By the same token, your autistic spouse didn’t ask to be disabled. It’s something with which they were born and have to learn to cope. It’s not easy and often frustrating for the ASD partner. But there are ways you can help.

1. Recognize that your ASD spouse has a DISABILITY.

Any person with a disability is going to take a little more time, more care, and a lot more effort than a NT person. Just as you would give a disabled child more time and attention, you’ll need to give your ASD spouse a little more time and attention. That’s difficult in our fast pace world, but it’s part of what you agreed to when you said “for better or worse”. I stress this point because, having travelled all over the country and lectured parents and healthcare providers, I have observed that NT people (parents and spouses especially) often lose sight of the fact that ASD individuals have a disability and need a little extra time and patience from Neurotypicals. Recognizing your partner’s disability is the lynchpin to coping with ASD. Without this basic foundation of understanding, you are likely to lose focus, start playing the blame game, and then you’re headed for the rocks.

2. Set systems in place and have a routine.

Your ASD partner needs a consistent routine to feel safe and regulated. The new and the unknown is stressful and continually anxiety-laden for the ASD individual. If every day is different, your ASD spouse will have a very hard time adjusting to a constantly shifting schedule. Be sure to set the alarm clock for the same time every day, eat breakfast around the same time, and go to bed around the same time if at all possible. Many people balk at this suggestion. They claim life is busy and unpredictable and you can’t alwayshave a set schedule. You’ll get no argument from me. Either the roof is leaking or the car won’t start. Life is complicated. I get it.

But a semi-rigid schedule will significantly lessen the stressful and emotional impact of those emergencies for both you andyour ASD spouse. Don’t take my word for it, some of the most successful entrepreneurs and individuals on the planet swear by keeping a set schedule and scientists claim it will make you more productive. Not only will keeping a set schedule make you more productive and happy, it will keep your ASD spouse regulated because he or she knows what to expect. If there are kids in the picture then having a reliable schedule is even more important. Kids who live in unpredictable households have a harder time in school and their behavior suffers.

https://www.cnbc.com/2017/09/01/how-to-schedule-your-day-for-maximum-success-according-to-science.html

https://www.lifehack.org/articles/productivity/this-what-the-schedules-successful-people-look-like.html

https://www.theladders.com/career-advice/schedule-successful-people

https://www.forbes.com/sites/kevinkruse/2016/10/31/how-millionaires-plan-their-day/#791529f86204

Just file this one under “Life Advice”.

3. Give them a head’s up.

If there is going to be a change in schedule, let your autistic partner know about it as far in advance as possible. Don’t spring it on them. Give them time to come to terms with the change, even if it’s something very small. Let’s face it, most of us are downright poor at communication. If you’re a man, I’m talking to you, but ladies, you’re guilty as well.

We all have good intentions. We mean to tell our partner about that important event. We even tell ourselves not to forget. Then something happens, we see something on the TV, hear something around the water cooler, and we forget to tell our spouse the dog has a vet appointment on Friday. Accidents happen. Don’t beat yourself up over it. But when you are living with an ASD spouse, you need to try as much as possible to warn them in advance if the schedule is going to change. Even if it is something as seemingly minor as having a salad instead of tacos for dinner. (True story)

That’s a really funny story which Kim and I tell to parents in order to drive this point home. I won’t go into it here, but your ASD partner needs to know when things change and don’t forget to explain why. Often times, a change that is upsetting to Kim at first, is mitigated as soon as I explain to her whysomething must change. If I pick up a different brand of coffee at the store, it might throw her off at first, but once I explain they were all out of our regular brand, she is able to intellectually work through the unexpected change.

4. Pre-plan—Forewarned is forearmed!

We’ve all seen the bumper sticker that reads: $h!# Happens. We laugh because it’s funny, and we laugh because it’s true. In life, stuff does indeed happen. For instance, you might be on your honeymoon in Eastern Europe, strolling the busy cobblestone streets of Prague, when suddenly you look up and realize your ASD spouse is nowhere to be seen. (Also a true story). When these things happen, it is important to have a plan in place.

You need insurance before the flood. If you wait for an emergency before you come up with a plan, it’s going to be too late, and you’ll end up panicking. People who panic make mistakes, and mistakes make emergencies worse.

Plan for emergencies ahead of time. In the instance above, I had already gone over with my wife what she should do in the event she found herself lost or separated from me in Europe. That plan consisted of: 1. Find the nearest uniformed officer, police station, or hospital. 2. Tell them you have autism. 3. Tell them you are lost and ask for help.

Thankfully I only spent an two and a half hours wandering the streets of Prague, worried sick, before I received a call from the Czech police. My wife had followed the plan which we made in advance and, after the officers figured out where I was, they had her back to me inside 3 minutes.

Getting lost isn’t the only situation you need to pre-plan with your ASD spouse. Plan things as simple as what to do when they feel overwhelmed, what to do if a flight is delayed, and what you’ll do if the pot roast doesn’t turn out right. It’s a small extra effort that will make your ASD spouse feel more secure, so they know what to do in the event plans go awry.

Having a plan in place when Kim is overwhelmed has saved us a lot of heartache.Your ASD spouse needs calming strategies when they are overstimulated and figuring out those strategies in advance makes dealing with sensory overload much easier.

A large part of pre-planning is making sure you are equipped with the sensory tool you need. Planning before we go out somewhere reminds Kim that she needs her noise-cancelling headphones when we go to a busy public place, or to pack her Theraputty if we are going to be somewhere she’ll have to sit and wait a long time.

Be sure to check out Kim’s site for strategies dealing with sensory overload, over stimulation, and a host of other sensory processing difficulties you are likely to run into.

5. Teach

Remember, your ASD spouse has a communication disability and probably some sensory processing difficulties—but it doesn’t mean they are stupid.Just like NT individuals, ASD individuals can learn and grow. When I first met Kim, she did not like television. TV shows moved too quickly for her to follow and she didn’t understand what was happening because she has communication difficulties. It must have been a lot like watching a show in a foreign language. Sure, you see the people on screen, but you aren’t following the plot and everything is confusing. Not much fun.

We developed a system where we would watch a show and pause anytime Kim found herself confused. At first, 30 minute episodes took two hours. But Kim slowly learned to understand the social interactions taking place and now we can watch entire movies without having to pause once.

Take some extra time. Slow down. When your ASD spouse doesn’t understand something, teach them. You’ll be amazed how much he or she grows and matures if you are willing to take the time to mentor.

This is a two-way street. Any time you are teaching, you are learning as well.

Kim is very intelligent (sometimes too intelligent for her own good) and she has a tremendous amount to offer, but she needs extra time to express herself. When I’m in a hurry, or impatient, Kim will usually give up trying to express herself and I miss out on what she has to say. Several times this has blown up in my face when Kim was trying to warn me of something, but I was too impatient, and then end up making a mess of things or sticking my foot in my mouth.

6. Learn to Speak Chinese.

Your ASD spouse speaks a different language. The words are English, but the language might as well be Chinese. You need to learn their language. Communication is vital in any relationship. It is even more crucial in a relationship with an ASD partner. You need to learn effective communication and it’s up to you, as the NT partner, to learn your ASD spouse’s unique language. This might sound unfair, but I’ll refer you back to tip #1. Your partner has a disability. If he/she could learn to speak your language, they would have done it already and saved themselves a world of trouble and heartache. Instead it is up to you to study the way they communicate and figure out how to get on the same proverbial wave length. Once you’ve started to speak their language, you’ll be better equipped to help them speak yours.

It’s only after you have started to learn the unique ways in which they communicate that you will both be able to start building healthy and effective methods of exchange.

Again, I can’t stress this point enough. You need to communicate, and that means learning to communicate within your partner’s disability. If you aren’t communicating effectively, I guarantee your relationship is going to fail. Ask any marriage counselor about the importance of communication. I’m sure they’ll agree.

7. Acceptance.

This is another big one. We, as a society, pride ourselves on how tolerant we are of people who are “different”, but we have little room for anyone who is actually different. Autistic people are different. They see and experience the world differently than NT people do.

Let’s face it, as husbands and wives, we spend a lot of time trying to force our spouse to conform to ourview of the world. After all, if everybody were like us, the world would be a perfect place. I’m not talking about autism here, just human nature in general. Human beings are inherently selfish. Any marriage counselor will tell you husbands and wives always think the other person in the relationship is selfish, and they are both right!

Most of the stress in any relationship exists because we want our spouse to be a mirror image of ourselves. Of course, the reality is, if our spouse was exactly like us, we’d probably hate their guts. But that’s a whole other psychological can of worms. Your spouse is different from you. He or she has their own likes, dislikes, and way of looking at the world. If your spouse has autism, this is doubly true.

You can either try to force your spouse to be the person you want and expect them to be. In which case they should divorce you! Or you can accept and embrace their differences.

Your spouse, be they autistic or NT, is a unique person. They have likes and dislikes, they have strengths and weaknesses, and they have their quirks and foibles. You can either love and embrace them in all their human fallibility, or you can be alone for the rest of your life. Because everyone has quirks and inconsistencies. There are no perfect people. Not even you. Demanding a perfect spouse only demonstrates your own immaturity.

Living with an ASD spouse doesn’t have to be a crucible and it certainly shouldn’t result in PTSD. Relationships take work. Just as there are no perfect people, there are no perfect relationships. Every relationship requires hard work and effort, ASD relationships just need a little extraeffort. But the extra effort is worth it. A relationship with as ASD spouse comes with benefits you won’t find in a neurotypical relationship.

1. Honesty

NT people rarely say what they mean and often disguise their true intentions behind a lot of twaddle. Your ASD spouse will never beat around the bush, muddle up their meaning with metaphors and cliché platitudes, and they won’t claim they need space when they really mean; I never want to see you again. ASD people are honest people. They won’t tell you they like something to avoid hurting your feelings. If you need an unbiased opinion, an ASD individual will give it to you. That kind of honesty can take some getting used to, but if you’re tired of the social mind games played by the NT world, it’s a breath of fresh air.

2. Child-like excitement.

The ASD individual often retains a child-like zest for life that the NT person loses as they get older. NT adults lose their appreciation for the little things. Our happiness at splashing in puddled is usually blunted with age and experience. But the ASD person, more often than not, still gets excited at the sight of a butterfly. If you ever find yourself wistfully recalling your carefree youth, there is no one better to help you recapture that feeling than an ASD spouse. The sight of flowers make’s Kim jump for joy and flap her arms. And it never fails to bring a smile to my face.

3. Unique Perspective

We all saywe want a unique perspective, or claim to possess one, but NT people mostly view and experience the same world. We interpret that world in much the same way as they next person. But the ASD individual sees a whole different world. It’s a beautiful and fascinating place and your ASD spouse can open your eyes to new and fascinating ways of viewing reality, if you let them. Will you let them?

My Lost in Prague adventures continued…

Before the start of our honeymoon William warned me about pickpocketers; he instructed me to have my passport and autism card “on my person” and to not leave it in my purse. So from the first day of our trip I had been pinning a pouch with my ID and ASD card to the inside of my pants. I had stole the idea from my grandma who pinned a pouch with her ID and medical info onto her underwear. I always thought this odd, but for the honeymoon trip I saw it as a rather ingenious idea. I, however, decided to pin it to my pants- pinning it to my underwear seemed a bit odd. Anyways, back to Prague…. so until now I had been pinning that pouch into my clothes. I changed clothes when we arrived at our Airbnb and I didn’t want to mess with trying to unpin and repin it to my pants. So, as William and I headed out that first evening in Prague I left my passport,ID and ASD card behind.

On our way to the city center we stopped at a few corner stores and a grocery market in search for oatmeal and bananas for the the next morning’s breakfast. I was not entirely regulated so I took a considerable amount of time at each place. William was excited to see the city and wanted me to hurry but I was dysregulated and hurrying me made me slower. So, by the time we got to the city center we were both frustrated. William stopped to take a photo and I kept walking. He then followed behind. I noticed my brain was turning into Swiss cheese and stopped to put in my ear plugs (when I am auditorily overstimulated my brain becomes like Swiss cheese- meaning the pictures I think in develop holes and I also get blurry vision, I’ll expand on this in a future blog).

William didn’t see me stop so he went on past. Once my plugs were in, I looked up and no William was in sight. I knew he had bypassed me, but I saw no sign of him. I decided to keep going in hopes I’d catch up. Just so you know, walking in the streets of Prague is like driving in rush hour traffic during a rainstorm. People are everywhere and no one sees anyone. I eventually ended up in the courtyard where there were some festivities going on. I saw a thing that looked like the marshmallow man, although I discovered later it was a giant polar bear. I also saw a man playing music with glasses. And, my favorite, I saw a man making huge bubbles. Hundreds of shiny bubbles floating in the air dancing, in the wind! I was mesmerized for a good 10 minutes before I remembered I needed to search for William. I decided to go back to where I had seen him last. I made it back there but no William in sight.

Then pictures flashed in my head of the steps we went over to take if I were to get lost. Step number one was to find a uniformed person such as a police officer, so I searched around until I spotted one. Step number 2 was to inform the officer that I have autism and that I am lost. I knew that the officer may not speak English, so on my phone translator app I typed that I have autism and I am lost.

I was right, the police officer did not know English very well but he was able to understand my words through the app. The officer took my phone and typed in that he needed to see my passport. I knew that was step number 3, but I also knew that I left my Id pouch behind. I typed in that I didn’t have my passport but that I needed help finding my husband- step number 4.

He looked at me for a moment and then phoned two officers who knew more English. He typed help was on the way. The two officers drove up in their police car and I was ushered in. They asked me many questions and I answered the best I could. After 15 minutes riding around in their car I showed them my phone that had William’s number on it. The officer let me use his cell phone to call William. William picked up and I said “I am in a police car where are you?”

He struggled finding a street name but after a 5 minute convo with one of the police officers his location was known.

The officers sped through a crowd of tourists with sirens blaring and I hung on for dear life. A few moments later they came across a very concerned looking newly wed. They parked and got out to see William. They told me to stay put. Then the door opened and they said I could reunite with William and to have a good honeymoon. As they drove off William turned to me and said, “you are very lucky they were nice and didn’t take you to jail for not having your passport.”
What a first day in Prague that was…and it still wasn’t over. Here’s what happened later that night and some pointers if you ever go to Prague.

-Watch out for cab magicians- William and I took a cab back to our place after the lost ordeal. It was late and we were tired. He haggled for a fair price when a cab driver tried to initially overcharge us. Once the price was set, we got in and boy howdy did we go for a ride! The street lanes seemed to disappear and all rules of the road lost. We both feared for life with that crazy cab driver! When he pulled up to our stop William paid him and even gave a very generous tip. The cab driver took the money, counted out our change, fanned it out and showed it to us, folded the money back up, and handed it to William. It wasn’t until a few days later William noticed we were short 1,000 Czech dollars. That cabbie pulled a slight of hand on us when he folded up the bills.

-Don’t fall into the museums trap- There are several museums that look interesting, but are nothing more than nothing. We went to an interesting looking museum that was supposed to be an underground tour of the city and it’s hauntings. It was very lame to say the least and something I could have constructed myself. The chocolate museum is another rip off example. After coming from Belgium and eating very yummy chocolates, I was excited to see a chocolate museum in Prague. They advertised that entrance into the museum would include learning how to make chocolate and all you can eat samples of the different kinds of chocolates. It was not that at all. It was all you can eat of the chocolate CHIPS that they melt to make the various chocolate delicacies.

-The museum of communism, the Jewish cemetery, and the castle are all worth seeing. You can even get free entry into the castle if you walk up the back hill. There are also several great restaurants and cafes to experience.

-The Petrin Hill Park is fun to explore and great to hike up; although, if you don’t feel like taking the steep 1.5 mile uphill path you can either take a cable car up like William or make your own path straight up like me. William was too tired to walk the path, so he said he would take the 15 minute cable car ride up and wait for me at the top. He was really looking forward to resting and reading while he waited. But, when he got there, low and behold there I was trotting gleefully towards him. He accused me of running up the path, but I assured him I didn’t- I just made my own path straight up!

-Our trip to Prague was a lot of fun. If you visit remember to make an action plan in case you get lost, carry your passport, don’t be fooled by museum descriptions, count your money often, and pray you won’t get flattened by those crazy drivers or pedestrians!

A common misunderstanding I hear a lot about is how anxiety, irrational fears, or a thought distortion is the cause of (or avoidance of) a behavior or reaction when in reality the cause is a matter of ASD logic and safety.

In this blog I try to help you understand the difference between anxiety and self preservation when it comes to sensory processing dysfunction- a common occurrence in those with autism.

Hypothetical scenario 1
let’s say I avoid going outside until noon because in the AM there are lawn care workers throughout my street using mowers and leaf blowers. They break for lunch at noon. One AM you ask me to go outside to water the plants, and I refuse because of the leaf blowers.

Question: Is my fear irrational and am I exhibiting a sign of anxiety by refusing to leave the house until noon?

Probable answer: Many would say yes, it is irrational and anxiety driven, especially if I was unable to articulate why I was refusing to go outside. This answer however is incorrect.

I go deeper into this after scenario 2 so keep reading…

Scenario 2
We are in the kitchen baking cookies which are now on a pan and in the oven that is set to 475 degrees. When the timer goes off I ask you to get the cookies out of the oven with your bare hands. You refuse because you fear getting burned, like so many times before when we cook together.

Question: Are you exhibiting anxiety and is your refusal to pick up a hot pan irrational fear?

Probable Answer: No. Most would say that refusing to take a hot pan out of the oven is not anxiety driven nor irrational bc doing so would cause physical harm and pain. Touching hot pans are dangerous and can lead to serious burns.

Now let’s add to the scenario: I tell you you can use a pot holder (you have never used one before) to pick up the hot pan. You are anxious at first to use it bc it’s something new and bc in the past you were burned when getting a hot pan out of the oven. I explain and show you how the potholder works and with practice and exposure you eventually use the potholder successfully whenever we bake. cookies.

Digging deeper…When you first try the pot holder you would likely feel anxious in anticipation of burning yourself but that anxiety lessens as you successfully pick up the pan without burning your hands. The anxiety came present when you were asked to do something different…it becomes a fear of the unknown- that is anxiety but the actual avoidance of picking up a hot pan with your bare hands is not anxiety based.

Take notice…In the scenario I also took the time to not only show you how to use the potholder but to also explain how the potholder works and why it’s important to use it.

Back to scenario 1 and how leaf blowers are like hot pans…

A little more info to consider… When I encounter leaf blowers my brain shuts down, I am unable talk or think, and I feel excruciating pain throughout my body.

Here is what it’s like when I encounter leaf blowers (below is an entry from my journal)

“…the stupid leaf blower outside feels like an earthquake and sounds like a bomb. I can feel the vibrations of the choppy sound it makes and it hurts. It is painful and I cannot think. I clench my eyes shut and cover my ears. I have to wait for it to finish. I remove my hands…but the noise continues. I try to bear it but it becomes too much. I re cover my ears, close my eyes, hold my breath, make a continuous noise that sounds like a moaning dog, and curl up in a ball with my head pressed on the ground. I am paralyzed”

Now that you read what leaf blowers are like for me it’s time to Introduce my “potholder-“ You bring me noise cancellation headphones and show me how to use them. You also explain why they may be helpful and how they work. I would feel anxious at first…it is something different, the outcome is unknown plus leaf blowers are painful for me. So, I may need practice and repetition but eventually I am able to successfully go outside in the AM with my headphones.

One last consideration..because my sensory system processes information differently I may think it odd and irrational that you refuse to pick up a hot pan. I may not feel the pain or the burn from picking it up because my sensory processing registered that sensation differently than you. Similarly you may think it odd and irrational that I refuse to go outside in the AM. Leaf blowers don’t disorient you or cause pain because your sensory processing registered that noise and vibrations differently then me.

For you picking up a hot pan is dangerous and it hurts . For me, leaf blowers are like hot pans

I have a habit of becoming mesmerized by nature and wandering away, sprinting off, or freezing in my footsteps because of overstimulation. I also tend to take the less travelled path when hiking the wilderness. I like walking through the branches and dirt, not on sidewalks or gravel.

So, it was inevitable that I would get lost during our trip to the UK and Europe. The first time was at the Munich zoo, the second time I ended up in a police car in Prague, and the third ended up being a 2.5 hour hiking expedition to find civilization in the Austria mountains. I just want to say that it is a good thing I think in pictures and that William and I went over what to do if I get lost during our honeymoon-1. find a uniformed officer, police/fire station, or hospital 2. inform the officer or emergency worker that I am lost and that I have autism 3. show my pass port and autism ID card with emergency numbers 4. ask for help.

This blog is broken up into two parts as I will be sharing about all our adventures in Prague, not just my blind explorations and run in with the cops. Additionally I will provide some suggestions to help prepare ASD individuals when lost during travel/outing.

Just for the curious minds… My zoo adventures I will detail in the blog titled chocolate toes and my Austria mountain expedition will be in a blog titled lost again…

Here we go. But first, wrap yourself in bubble wrap, grab a blow horn, look both ways, and honk that horn loudly!! Otherwise you may get ran over by a car, bus, boat, bike, or people who have forgotten how to walk straight! We saw some crazy streets, but Prague was the worst!

We arrived in Prague late afternoon after a LONG train ride from Munich, Germany. We exited the train, plugged our destination into our phones and immediately learned four things-both our phones were low on charge, our airBNB was 4.3 miles away, no one spoke English, and we would need to cross a river.

To make a long story short, William and I found a public boat taxi that could take us across the river. However, what was supposed to be a 10 minute wait for the water taxi ended up as a a 45 minute wait. The odd thing was that we saw the taxi the whole time, it even stopped at our port. Twice. It let people off but not on. It went past us 4 times. The other people waiting with us were obviously upset-some left, some cursed, and one man pulled down his trousers and peed. I guess he couldn’t wait to find a bathroom. Finally the water taxi stopped. A lady in front of us exchanged harsh words (I gathered by the tone) with the driver and then we all entered the boat, but we exited again one minute later as the taxi stopped at the next port. As soon as we stepped off the boat we all filed back on. It was bizarre and beyond me for the reasons behind such a rule.

In any case we eventually arrived across the water and continued on our trek to the Airbnb with our 35 lb (mine) and 30 lb (William’s) backpacks in tow. 4 miles later we arrive at our destination and discover that there was a train station only a half a mile away. We had apparently exited at the wrong station.

I was super excited when I opened the door to the Airbnb, it had a loft bed and lots of drawers, cabinets, and dressers to explore. I unpacked my bag began sorting and organizing ALL of my stuff. William reminded me we were only there 3 days so I don’t need to unpack EVERYTHING. I kept arranging and rearranging my stuff though-sorting is calming and resets my brain.

After an hour he managed to get me to stop so we could explore a little before night fall. So, off we went into the city center of Prague where I’d end up in a police car and William ends up the victim of a crooked taxi driver with magic tricks and slight of hand. All of this on our first day in Prague.

To be continued…

I normally spread awareness about autism but today I want to spread a little bit of light on eating disorders, feeding disorders, and sensory processing difficulties (such as dyspraxia) that effect eating.

A person with autism can have a combination of these issues or none of these issues. It is imperative to understand the differences because how they need to be approached is vastly different.

There are several categories of feeding disorders, but I won’t go into them all now. Many, but not all, of the feeding disorders revolve around inadequate nutritional intake because of a structural, sensory processing, metabolic, or digestive issue. With purely a feeding disorder there is not typically a fear associated with weight, calories, or body image. Most of the time a feeding disorder does not stem from a psychological issue. I say most because sometimes a person can associate a food with an experience and develop a phobia to that food, but I am not talking about that one here.

An eating disorder is a disease of the mind; it is a mental illness. I’ve heard eating disorders be likened to things such as cancer. Both are diseases that are very hard to treat and can have remissions and relapses. It can come and go and sometimes you aren’t even aware of the issue until the disease has progressed. Like feeding disorders, there are several kinds of eating disorders. All eating disorders have a psychological component to it. They almost always stem from anxiety, fear, a need for control, and/or poor emotional coping. In eating disorders such as Anorexia Nervosa there is also typically body dysmorphia making it difficult for the person to see themselves accurately.

People with eating disorders may have some additional feeding issues but remember they are separate issues.

Someone with an eating disorder may refuse to eat a certain food because of fear of weight gain or an irrational fear of what the food will do to the body. That same person may avoid food because there nervous system registers the components of the food as dangerous (for lack of a better word). The texture or taste of that food might be like eating fire ants, it may create such a pain that if is unbearable and the food is refused. That person would be struggling with both an eating disorder and a feeding disorder.

There can also be issues with getting adequate nutrition that aren’t related to eating or feeding disorders but does have to do with sensory processing or executive functioning. So for example a person with autism may have dyspraxia (difficulty with coordinating or sequencing movements). This can result in challenges with the actual act of putting the steps together to prepare a meal. For that individual, poor food variety and intake may stem from needing to prepare the same 1-2 things everyday because preparing something different is too challenging.

All 3 of these eating issues result in poor nutrition. The reasons behind the behaviors that cause the result though are very different.

Remember an eating disorder is a mental illness a feeding disorder or cognitive difficulties with sequencing are not.

I could continue on this “soap box” and get into the neurology of each as well as how the result of the nutritional deficiencies manifest in a similar manner, but I will not. I will mention one thing and then end, otherwise I’ll go on all night and all day tomorrow about it as we are getting into one of my special interests. So, if a person with ASD also has nutritional deficiencies from poor intake several of his/her ASD symptoms will intensify. A few things the malnourished brain has difficulty with include sensory processing, emotion recognition and expression, emotional regulation, communication, recognizing social cues, and executive functioning. A person with a feeding disorder or an eating disorder can present like a person with ASD when in a malnourished state. When properly nourished though those symptoms of the malnourished brain diminish. On the other hand a person with ASD will still exhibit those symptoms to an extent; they just won’t be as pronounced as when in the malnourished state. This is because autism is a developmental disability and has to do with how the brain takes in and processes information.

In conclusion I want you to remember that those with ASD can have an eating disorder, a feeding disorder, difficulty with adequate intake because of cognitive/sensory processing challenges, or no issues with food or nutrition period.

Remember eating disorders are mental illnesses. Here are three poems I wrote while in the midst of my eating disorder struggle.

-NOTHING
Nothing inside
Nothing out
I can barely hear my own voice
A whisper among a roar
Actions are not my own
A puppet in a play about death

-TRAPPED
Trapped in my thoughts I can’t let go
Afraid and alone
Surrounded by people
Laughter all around
Trying to be in control
Yet controlled

-I want to kill myself and be set free from this living hell which entraps me.

The eating disorder is like a death eater, it sucks the life from you, prevents you from being in the present, and forces you to focus on the past and future. It distracts from the here and now, it makes me black.

Checkout my gofund me page if you want to help me with raising awareness about autism and eating disorder

Did you learn something new? Please share and comment.

This first blog is more of an introduction of what will follow.

Backpacking for three weeks is not an easy feat for anyone but it can be especially hard for someone who requires routine, struggles with communication, has an overly sensitive central nervous system, doesn’t like to be still, etc…

Now, honeymoons are supposed to be romantic and exciting-full of sex, fun, and adventure! The days leading up to it are often filled with excitement. However, for us it was filled with worry. I’ve never travelled abroad and with a chronic history of wandering and getting lost William and my parents were terrified about the possibility of this in Europe. One of the first memories my parents have of William is when one night he anxiously arrived at their front door, looked up at my dad and said “sir, I am sorry but I think I’ve lost your daughter.” My dad’s reply was simply “don’t worry she’ll find her way back.”

So, from the start there was worry all around. As a matter of fact we almost cancelled our honeymoon because of the uncertainty of how I’d do with my autism symptoms on such a trip. Surprisingly though I did pretty well; and our trip WAS filled with sex, fun, and adventure-as it was supposed to be! We did however have to take my autism and sensory difficulties into consideration throughout every step of our journey. From packing our bags to riding on planes (trains, busses, underground…) to finding places to eat to navigating the busy cities and wilderness. We started our journey in Tampa FL and thankfully we also ended in Tampa FL! During those three weeks however we visited Edinburgh Scotland, Innsbrook Austria, Ghent Belgium, Prague Czech, Munich Germany, London England, and Venice Italy.

I am not going to chronicle my adventures in order, instead in future blog posts I will pick a few topics to cover and stories to share including:

• -EEEK, icy showers and a dyspraxia wife!
• – Lost
• -The tortures of sitting still
• -Unexpected
• -Eating disorder recovery, trying new things, and delicious Belgium chocolates.
• -Pot eating and food challenges
• -Schedules, routines, and accommodating autism
• -No more leaf blowers
• -Packing woes
• -Chocolate toes
• -Say what? Autism communication and foreign language barriers
• -Our favorites

Help me spread Autism Awareness by donating to my GoFundMe campaign! I’ll be speaking at the World Autism Conference in Texas, as well as several other locations around the United States and need your support.