Part 1- Bridging the Gap-Automating the Manual Processor- The experience that changed our lives

*Edited in May 2020

Its been months since we’ve had our discovery and each day we face more issues that can always get boiled down to this theory. It’s been paramount for me in having peace of mind, in my husband feeling understood and seen, and for healing our marriage from the YEARS of complete and total misunderstandings and miscommunications. My next mission is to see how I can apply and help my two sons. Because for the first time, I can finally put into perspective just how HARD the journey ahead will be for them, and I want to give them every tool I can so they can be HAPPY. This post will be revised and broken up for easier digesting. As well as a post geared toward introducing these concepts to the ASD individual themselves, vs having a loved one explain to them. I will leave this post up in the process, but please be forgiving as I try to fix wording. I lack the ability to explain my thoughts as clearly as I want

Oct 2021- I’m currently in the process of completely rewording this entire blog for a simpler presentation and updated terminology. I’ve omitted a bunch of fluff that I hope to condense for simpler digesting. Thank you for your patience. 🙂

History and Introductions (Revised Oct 2021)

Consider the Possibilities

I know to some I may be a random stranger on the internet. I may know you in person. I may know you from church. You may even be family, close or extended. Maybe you’re actually a client who stumbled across this. This is not something you saw coming from your bubbly and outgoing friend. I’m sure we don’t seem the type to have a crazy life changing experience to share. But we do. Plain and simple. And we want to share it with as many people as we can. If you know us, brace yourself. We’re about to share a side of us you may not have ever known. It’s raw and real, and more than ever, we have no shame.

Credentials (or lack of)

I know credentials mean a lot to many people. I don’t have the kind the academic world tends to value. We both don’t. I am not a doctor, psychologist, or therapist. I have no real merit to my name that would make me qualified to disburse a theory with academic authority. I received my bachelors in Marriage and family studies and hoped to go to graduate school. Instead I became a custom cake decorator.

We have other valuable “credentials” and you can decide if it’s worth your time to listen to our story. I’m speaking on behalf of my credentials “earned” through life experience as a wife, mother, sister, daughter, and business owner. But this journey was not one I took alone. Our family has packed in a ton of full spectrum experiences over the years, thats for sure. Our experience was not found in any self help book or textbook. It evolved after many years of tumultuous and trying times; years of emotional isolation, thousands of prayers, and thousands of traumatic episodes.  This realization is not limited to the duration of our marriage either. It has been a lifetime in the making, on both our parts. Unique life experiences we both brought to the table. I couldn’t have done it without my husband trying to self reflect and open up to me. I’m always telling him he’s the real MVP here. I may have been the one tinkering and putting the peices together, but he was the tortured guinea pig. I hope it’s clear and understood, I *more* than adore him now. Telling this story how it unfolded from my perspective is not meant to demean him. Many people are experiencing this side of the reality. I share the scope and magnitude of his reality later. A reality as real as my own. I always loved him before, but our struggles tainted both our views of each other. This is happening in so many relationships, marriages, and families. It’s more than a misunderstanding and I can see how its been impossible to even detect. I will share these experiences from both of my perspectives throughout this post. I know now that both sides were hurt in very real ways. I know if you are reading this, you are no doubt being hurt by your loved one. I can promise you that in most of these relationships, this is unintentional even thought it appears to be direct attacks. Please read this entire blog to consider the possibilities. 

A Perfect Storm

Hi, I’m Alicia. I’m 34 years old. (Revised at 36). I have struggled with ADHD, OCD, Depression, Anxiety and Hypo Sensory Processing Disorder. (This does not include the health issues over the years). Feels weird to write it all out when I have never used these labels to define me. But for the nature of our experience, it’s helpful to have this information for context. Being obsessive compulsive has been both a blessing and a curse for me. My OCD in this case was one of the driving forces to figure this out. Obsessed with finding answers, obsessed with researching, obsessed with picking his brain. All driven by both fear and hope. Fear I could never live happy with the love of my life, and a hope that I finally could. That doesn’t even address the fact that I needed to be able to connect with my sons too.

     I do not share our story to encourage people to stay in toxic relationships or situations. I am not advocating for staying in any unsafe or abusive situations. If you are not safe, please seek help now. This needs to be clear before I continue to share some of the dark times we’ve been through. I’m not telling anyone they should endure what we did. I’m not telling anyone that what we experienced was OK. I’m sharing this so you know we’re not just blowing steam.We’ve been through the trenches.  Throughout this entire experience, I stayed very close to the Lord. I knew early on this was not something I could endure alone. We both prayed often and received confirmations frequently that this path was the correct path for us. I share this because the enemy was not what it seemed. Our situation was not normal.

     “Normal” people do not sign up for 14 years of suffering. But as it turns out, we’re not “normal”.  Our marriage and family life was toxic many times, that last 6 years being the worst with the most isolation.  The majority of our friends, acquaintences, or clients had no idea. As mental health awareness became a thing,  I let out small hints when only necessary. How do you explain to the school that the Ford kids aren’t coming in, AGAIN.  How many times can you repeat “we’re having a mental health day.” Yeah it’s true, but it sounded like lies. I wanted to just tell people we’re recovering from another traumatic episode that disrupted our lives. The kids would be way too distraught to even think of learning anything. They need to be home and heal with their parents today now that the mental storm has passed.  How do you do that without sounding like you’re lying or without having CPS called on you? How many times can you tell clients you’re behind schedule due to a family emergency? How many times before they think you’re a lying flake and stop booking you? How do you summarize to a client, a 4-5 day ASD 1/Bipolar 1 Rapid cycling, IED “marathon”? This event we all survived included hospitals, several police visits from domestic disturbance calls, home visits from clergy members, and emergengy mental health visits.  That’s what prevented me from staying on schedule that week. That’s why your cake is going to be a little late. 

    Countless concerned friends and family members encouraged divorce, separation, and tried to intervene. I only knew our situation wasn’t what it seemed. We needed help, but that wasn’t the type of help I needed. We needed hope. We needed a way to have real and lasting change.  I learned to stop telling people anything and downplay everything.  If we survived five episodes that week, I would only seek support for one. When people asked about our situation, I said we were doing better. I didn’t mention that comment might be only applicaple to that exact moment. As in, “yeah, we’re doing better than this morning.” I didn’t lie, but concealed so much. Our situation wasn’t what it appeared to be and I could no longer explain it to people without looking crazy. I know it looked like my ability to think clearly was gone. I looked like I had the typical symptoms of an “abused” woman who can’t seem to leave her situation. But this was not true in my case. I know people assumed if my self esteem was better I would have left. I had struggled with self worth for the majority of my life, but thats not why I stayed. My situation was different, and I know thats what they all say. I knew I was missing CRITICAL information that would put things into perspective. I knew it.  I wouldn’t have been with my husband if I didn’t know he was an amazing man. This man, trapped inside a mental prison, was suffering. Somehow! I could only see the suffering when his mental health had deteriorated so bad. But I couldn’t figure out the missing step that got him to those deteriorated moments so quickly. I could feel his hopelessness and despair. Abusers don’t curl up in a ball shaking and crying after they abuse. At this point I could see his behaviors as frantic cries for help, even though he told me I was his problem. In a sick and twisted way, “I” actually was, but I couldnt see a connection with my behavior and his suffering. His prison was real. I didnt know where it was or how to find this key. But HE was inside and I wanted more than anything to help him find a way out. Meanwhile, I was struggling with my own prison on the surface. A surface that support groups, therapists, and doctors could actually see, so I wasn’t all the way alone.  A prison of responsibilities, failing marriage, keeping up our appearances. Not in a fake way, but to not let people know how bad it was. A prison of maintaining a sense of normalcy for our children instead of crumpling on the floor. A prison where I resorted to never having the type of love and fullfillment I craved in a relationship. 

Crazy combined with determination 

    My OCD was a fishhook, I wasn’t about to let go of our marriage. We also both held convictions about divorce and had made covenants with God. It was the moments of clarity where we could see each other with our spiritual eyes. This is what held us together in the darkest moments. I KNEW his soul. So many times I had confirmations from God I could not deny. Both of us struggled with the resolve that this was the best God had for us. Waiting for the next explosion. Both of us surviving, neither of us thriving. Both thinking were giving our best for the one we love.   “Love” wasn’t enough to keep us together on so many occasions. When you are smashing your hand with a hammer, there comes a time where you can’t keep going in the name of love. 

    In the year before our breakthrough, we came to a deeper realization of just how much this life represents a battlefield. Our bodies did not reflect who we are as spirits. I know there is life after death with our loved ones. I knew our struggles were due to faulty mortal bodies and these struggles would not plague us in Heaven. God showed me who he was. I decided that if it meant I had to wait until Heaven to get that version of him, then I would. He was worth the wait. I could suffer through this short time on earth to gain an eternity with the man I loved. He was worth the fight. He likewise, agreed and felt the same about me. Turning back or giving up at this point felt like I would be leaving my sweetheart on the battlefield. I couldn’t bring myself to leave him there to figuratively bleed out and die. Even if at times he was hallucinating because of loss of blood and thought I was the enemy.  It all became so poetic after we had our breakthrough. All this time I felt I had fought so hard for him in our marriage, family, and relationship. I had no idea the depth and magnitude of the fight he was battling in his own mind to keep me in his world. And how doing that was causing so much pain to him. 

Childhood Experience With Autism

    This realization was affected by my childhood. Autism has been a thing in my life way before it was common to talk about. The type of autism I was familiar with was the kind so severe that you had to make huge adjustments in your family life, there was no way around it. Maria came in like a wreaking ball. It was not a gradual onset. It was sudden and unexpected. It was a dramatic shift from her bubbly self. She was talking, happy, connecting, and one day, as if overnight she was gone. Almost catatonic at first. My parents called a family meeting after she was  diagnosed. (It took a long time for doctors to admit at the time)  My parents explained a condition had altered her, she wouldn’t be going back to the way she was. They explained Maria would need special exceptions, a therapy room, and we’d also have to make changes when going to events or family functions. This meant we had to leave a little early sometimes if she got overwhelmed. We all agreed. Anything for Maria. I offered up my bedroom I had just graduated into and moved back in with my other sisters. We all wanted to help in any way we could.  We had to grieve the loss to embrace this new version of my sister. It was as if her brain had undergone something traumatic and shut down all parts of her brain that wasnt necessary for survival. She reverted to infancy, she ate, barely slept, and was in diapers. She began a program to help her regain some forms of functioning, but to this day, she still needs constant care. Someone to feed her, get her dressed, go to the bathroom.  She lit our world up though, and we were ready to rally around her. For many families, this severity was the kind that would tear families apart. It brought our young family together.  

   Having a ASD level 3 sister, it was easy to understand her need for order, structure, and routine. Her disorder was much more obvious. It was easy to learn the do’s and don’t with her. If you have on her list shes getting a cone from McDonalds, you CANNOT get one from dairy queen without being strangled. (True story bro). I watched my mother throw herself into the work trying to understand my sister. She worked with doctors and specialists. She became an early interventionist and advocated for families trying to help their children get the support and resources they needed. She created programs and methods that helped hundreds of very low functioning children. She ended up traveling all over because she was the best of the best. 

Invisible Enemy

   I’ve been around many people on the spectrum, my husband noticed this a long time ago and thinks I’m a magnet for these souls. I hope so, because they’re all amazing. I’d be honored to be considered such.  For years I never considered my husband could be on the spectrum because when I thought spectrum, I thought Maria.  So for 8 years we struggled with an invisible “enemy.” What type of deep dark thing happened to him when he was young that caused these type of reactions as an adult (or so we thought). I have always been able to feel who he was.  He was GOOD. His spirit was familiar to me, but his mortal body and actions were so foreign to me. It was as though my spirit received information from his spirit and I could just understand him in ways I couldn’t articulate with words. Even with this understanding, I was so far off from knowing him at his core. His behaviors wouldn’t align with who I knew him to be and I felt like I needed to be his PR manager. I’d often translate him to others, defend him to others when SO much of his behavior was unexplainable.  Deep down I KNEW underneath it all there had to be more information that would provide clarity and he would finally make sense to me. I constantly tried to “pick” his brain. It was so much more invasive before he was diagnosed. More relentless, less considerate. I was picking and disecting at a speed my own brain would have been comfortable with. I didn’t realize how much stress that caused him. 

Finally some clarity

    Our first “AHA” moment was after we got a diagnosis. We didnt have years of suspicion leading up to it. It was a lightening bolt. It was another crazy horrible experience we had just endured, this time relating to job loss and not understanding social boundaries. He did something socially inappropriate and totally unintentional. He was yelled at by many people and berated and it got him fired. He was embarrassed, I was humiliated. His own boss told me I was married to a loser. (Which I later called him back to tell him off BTW) But in that moment, I wanted to die. I couldn’t think about how it was affecting him. I was too busy wanting to crawl under a rock. I could normally understand the wave length and explain it to people, quite often I was his social buffer. But I couldn’t explain this. It was too much. I knew it wasn’t malicious. I could tell by the shocked and bewildered look in his eye that he had no idea why everyone was upset. I remember needing to leave his presence. Not like my typical suffocating self.  I walked to the end of our court to get the mail from the locked mail boxes. I specifically remember there had been wildfires in Utah that summer and there was a brown ashy haze in the sky. The sky was even miserable. And it was hot. Gross. I wanted to DIE. I didn’t want to hurt myself but I also didnt want to exist. I remember tilting my head to the sky praying to God that he would just end my existence as I shuffled back to our townhome. I paused to gather the strength before I went back inside. I didn’t want to hurt him with my reactions. I found him in fetal position rocking back and forth on the floor of our bedroom. It was the middle of the day, but pitch black inside because of our blackout curtains. It just felt so symbolic of how we both felt in that moment. I could tell he was truly traumatized by this. He kept repeating that something wasn’t right. Something felt like it was holding him back. He kept talking and all of a sudden a flood of mental replays started rolling in my head. The aversion to smells, textures. The social struggles, the literalness, the need for routines, the struggle with change, the black and white thinking. The fact that he would tiptoe across our kitchen floor. The moment we met and he told me he didnt like my perfume. (What guy didn’t like Victoria’s Secret Lovespell!?) And countless other instances entered and it dawned on me that he may have ASD. I never considered it because Maria had left such an impact of what the spectrum looked like. I googled a test and he took it within minutes. He told me “I think I aced that test.” And yeah. He did. 

  In those first 8 years of marriage, we weathered the storm of ignorance. And IGNORANCE is NOT bliss. We’d been thrown in a cage fight in the DARK. This was NOT what I expected marriage to be. Without my sense of sight, I tried to picture my opponent based off what I could feel. It had sharp teeth, claws, and moves fast. In my heightened state, my mind drew the worst of conclusions. What could cause a person to act in such a way with no percievable trigger?  Then someone turned on a light. It was a scared cat! What a relief. Yes, it still had claws, sharp teeth and moved fast. We were both relieved to find out we were dealing with a “cat” instead of a big scary monster. Phew. 

   Our next goal was to learn how to properly care for and tend to a cat. I hadn’t considered if I was even a cat person. Turns out, cat’s were HARD for me to learn about. Even in real life, I was THAT kid chasing and smothering a cat until it couldn’t breathe. You can’t do that with these “cats.”

Calm Before The Storm

   We learned all about it. I wanted to do all I could to respect his boundaries and accomodate him in whatever way he needed. Schedules and routines that I had considered before were honored and respected more diligently. I became so much more open about talking about when we were having struggles. We had a name for it now, we could request an accommodation, we felt empowered. We could ask for instructions at work to be written down, or to have an advocate with him in overwhelming situations. This was great. The struggles we had up until that point, I had kept on the down low. I had told next to no one.  But it hadn’t been super bad. People mistakenly assumed he had gotten worse after the diagnosis. Like  he was hamming it up, but we just became more open about his episodes. I felt hope. This was all still a walk in the park compared to what lay ahead for us.. 

   My husband continued to grapple with the diagnosis for years. He flopped back and forth from relief to denial. He felt he aligned with the struggles but the label implied he was wrong. He knew his existence was correct. In his darkest moments he rejected it completely. In his happier times he reframed it so he could try to process it. 

Constant Environmental Triggers

   I really don’t think we could have figured out what we did if we weren’t in the situation that we found ourselves in. Looking back, I can see now that all the stress and triggers we all dealt with created a perfect insane recipe for constant combustion. Had we not been dealing with so many “combustions” we would have never been forced to look deeper and deeper each time. 

  We are the parents of four sons. Two are ASD level 1. The other two have ADHD, OCD, and all have sensory processing disorder and our oldest has tics. These we’re exacerbated whenever Sean’s mental health declined.  Split in half, 3V3. Each side in their natural state triggered each other. Oh yeah. And we lived in a shoebox. On yeah, and in our already shoebox-we had our cake studio. 

   My husband Sean has suffered with Bipolar 1 Rapid Cycling, ASD level 1, IED, PTSD, debilitating Anxiety, and a slew of other sub- disorders. He also has Hypersensitive processing disorder. None of these  diagnosed until about eight years in. (In the Navy they diagnosed him with ADHD and Depression and gave medications that made his real issues worse.) Do you know what two opposite-end sensory processing individuals look like in a marriage? I’m a seeker, he’s an avoider. It means that massaging my back would make him feel like his hands were on fire. While for me I needed huge bear hugs to have my senses register the sensation. This exacerbated my emotional and physical insecurities for years in our marriage. I felt ugly, undesired, and completely depleted of my own sensory needs. Let alone having any standard physical needs met. No one talks about this, no one has support groups targeting this. All the articles I found were how to be in a marriage with ONE person having sensory processing issues. No one touches on the concept of a whole family struggling with opposite ends of the sensory processing disorder, let alone with all our comorbidities. 

Constant daily insanity

  Picture our nightly family scripture study. Three of the four boys are always shirtless, regardless of the season. This results in way too much sensory tempation. Slaps, pokes and smushing is more fun when you can feel soft pudging skin. Two children were always flopping over a couch. Not in a regular way, like your head is at the ground kinda way. Our oldest is getting his knee licked by the 8 year old who is now rolling on the floor. Our oldest can’t help but poke, belly bump or bear maul his youngest brother as hes blurting out repetitive nonsensical noises. This results in the youngest shrieking, falling or bumping into the 10 year old who was trying to stake his claim of 2/3rd of a giant couch.  Noises and chaos are always triggering for dad. The kids keep getting hyped up. I’ve learned techniques to help kids like this. I’m actually great with kids like this. I’ve worked with kids at church, schools, nurseries. I can even help my own kids function at times. But not all the time, not when my own brain feels like its also spinning out of control. No one has their scriptures or can focus. Are we having fun yet? Who wants to take a ride on this crazy train? Any takers?

Deep Triggers

  What about deep core triggers? My abandonment issues from childhood from my biological father would battle with his natural fight or flight instinct during conflict. He had to escape, his brain was so overloaded it couldnt function in the moment, thats why he needed time. I never knew it. I saw him running away when I needed him most. How about my deep need to make celebrations, holidays, anniversaries, and traditions super impactful and important. Go BIG or go home. This was a huge deal for me. Growing up we may have had our dysfunctional moments, but holidays and special occasions is where you COME THROUGH. You pull up your big girl panties and make it happen. If you don’t want to be a part of family holidays and extended family things, it was a sign that you may be a spawn of satan. (Kinda joking, but really, no one could imagine you didnt want to be with family without something being terribly wrong.)  Combine that with his aversion to holidays. Every holiday was a stress, the calendar was something he constantly rebelled against. He HATED the unknown expectations, the chaos, the idea of planning and executing something like Valentines Day. He was constantly opting out of family gatherings and it felt like the end of the world. At the time he wasnt able to identify just how hard these events, holidays, and traditions were for him. They were debilitating but he couldnt articulate that. At best he could tell me they were stupid pagen holidays that were stupid and a waste of time. That smacked me hard in the face as “you’re not important to me”. I learned in school that you can basically salvage an unhealthy or dysfunctional family if there is a strong sense of shared traditions for them to cling to.  Without strong traditions, I felt our family would have no chance. We were ruining our kids. It was common to have an episode on or near Valentines Day, St Patricks day, Easter, Mother’s Day, every Birthday, Halloween, Thanksgiving, Christmas, our anniversary, and New Years etc… etc… My worst fears about our family falling apart would come true. They’re going to grow up and be delinquents. Trigger. Trigger. Trigger.

   Over the last 14 years, we have dealt with insurmountable triggers, comorbidity, conflicting diagnoses (as in,  the very existence of another person’s disability, triggered him with his own disabilities, for example, my sons Tic outbursts of repetitive loud noises conflicting with Sean’s own sensory overload). Or his sensory avoidance conflicting with my sensory seeking in our physical relationship. DIRECT CONFLICT EVERY DAY, NEARLY CONSTANTLY. Compounded with job loss, financial hardship, 8 moves, self employment, Pregnancy loss, relationship discomfort, life transitions compounding, both of us in college together with 3 kids, health issues, surgeries, shifting roles, high stress, multiple suicide attempts, years of massive sleep deprivation, broken down cars, medicaton adjustments, new babies, hormon changes, body changes, health scares, and so much more. 

  When we were pregnant with our 4th we moved to California to be near my family for support. 2013- 2019 were some of the darkest years of our lives. We had a newborn, 2 year old, 4 year old and 6 year old. Oh and I was homeschooling when I had a newborn and all my littles home (first attempt). 2014-2017 was the most rapid mental, emotional, and spiritual plummet for Sean. The most tumultuous. These episodes seemed  to exponentially increase in that time. We started doing the cake business, worked together and were around each other 24/7, NO BREAKS from each other. Some weeks we wouldn’t sleep for 2-3 days because of cakes and easily put in over 100+ hours of work a week. There was even a period when we had all our boys in homeschool. The three oldest were all actors and our oldest’ s career was taking off.  My parents helped a ton, and my mom managed their acting careers for the most part. (I have only been on set a handful of times) And my parents helped with homeschool. You would think that it would have alleviated the stress. In many ways it did in the current moment. But the boys careers, choice to homeschool and the chaos of bouncing back from house to house was so chaotic and hard for Sean to process. He abhorred it. He would deal with it until his next explosion. He hated that they did acting. He hated that my parents had to watch our kids while we worked. He resented me for it. He felt I was putting our responsibilities on others. It was only years later I could understand why he felt this way. 

  We can’t even calculate the combined percentage of divorce rates. If we were to stop and weigh every factor, I know it would be close to 1000%. We should not be standing here and we shouldnt be standing here together. Not according to statistics. This has been a journey of a lifetime. It will last us a thousand lifetimes.

  Over the last 6 years we had frequent tinkering sessions after almost every episode (always days later when things calmed down). These were non evasive moments we’d come together and peel back layers. Hoping to find the source of the triggers that caused so much distress. It is because of these tinkering sessions that we were able to find this tiny, invisible piece that helped us change our lives. 

Foundational Breakthrough VS Surface Breakthrough

In order for me to accurately articulate what we experienced. It’s important to make extremely clear where this was occurring. This was not a surface level type of breakthrough. Over the years we had countless breakthroughs that we thought were true and lasting. They’d “work” for a week or we found a way for him to “automate” a specific circumstance or situation. We were happy with that, he was happy to create any kind of hack that made his experience not so horrible and we thought it was progress. It did nothing to remedy the source of the crisis his brain was in. It just made it slightly less traumatic, and for him, any amount of relief was good. These were life hacks, blueprints, automated responses to certain situations. Which by the way, even though I helped him with these, I wasn’t even always happy when he applied them because my brain interpreted them as disingenuine, when in reality it was just a “buffering” delay while his brain pulled up the blueprint for that situation. That delay told my brain his hesitation meant he didnt really think I was pretty, because if he thought I was pretty, he could say it without thinking. I combated my own brain millions of times. But it was just too good at doing its dang job of interpreting data unconsciously. My brain was set up to misinterpret EVERYTHING about him.

At times, these other “breakthroughs” were not actual breakthroughs at all. It was simply a matter of him learning a cause an effect with detrimental effects. He learned to suffer quietly for longer. On the outside, I viewed something as progress, that I was able to connect with him to understand why something was important to me and why it had value to him too, that it was related to him too. In his mind he was realizing that a specific thing was so important to me, and if he didn’t DO the ACTION, it would result in horrible consequences. He understood THAT something was important to me. He may even be able to tell me WHY it was important to me. But because it still didnt make sense to him on a personal level, he couldnt truly process it. I later learned that Awareness does not equal processing for him (I will explain below). My brain would automatically interpret the data it received and formulated the instructions for how to use it. All WITHOUT me being aware it was doing it. His was receiving the data, but could not interpret the data into something meaningful. His brain would sit there holding the data, because I TOLD him to. Holding the data it couldnt interpret was mentally taxing beyond what he could ever describe. At times he even thought we WAS processing the data because he could tell me the data back when asked the questions. But there is a HUGE difference in connection between reading the data and being able to plug it in where it belongs. Getting upset with him about this was a constant issue in our relationship. It felt like a constant attack TO me. My brain told me this was PROOF he didnt care about me, because if he “wont” alter his behavior after he’s learned this new information, then he CLEARLY doesn’t care about me. My brain could not consider the possibility that his brain was not actually processing/translating the data in his own brain and that it wasnt a matter of “Wont” but “Couldn’t”. If I was dealing with someone whose brain processed like mine, it would ABSOLUTELY be a message they do not care about me. I was not aware of the nature of how his brain processed, let alone all the implications it would imply and all the areas of his existence it would affect.

Later I learned it was as REDICULOUS and psychotic to get upset with him about this as it would be if someone wanted me to understand Quantum Physics (with no textbook) just because I was aware it existed. And on the pure logic that they really really wanted me to just know it.  INSANE. GET ME OUTTA HERE! How crazy does it sound to threaten a loved one with divorce or other things for not knowing quantum physics, or for not trying hard enough to learn quantum physics without a textbook. How many times have we metaphorically demanded them to learn quantum physics on an INSANE deadline, only to tell them it should have been an easy task, if they really loved us they would learn it by today (remember no textbook too.) If they failed to do so it was because they weren’t trying hard enough in the relationship, they didnt WANT to connect with us, we tell them they were incapable of LOVING us because they couldn’t SHOW us by learning quantum physics…without a textbook. Yet everyday they attempt the impossible to show us they DO LOVE us, until they are incapable of trying to do it anymore. Retreating in defeat. How demented of a reality would that be to live in. Yet, he did! And by the woman who was supposed to love him more than anyone in the world? What a life to live. For years I was shocked and bewildered by behaviors, thinking he was so aware of so many things and refusing to implement them because my own brain could interpret social/interactional data with ease. Consider the possibilities and what this could mean, if the real problem in your relationships, marriage, lives, jobs, friendships, and interactions could be boiled down to an epic misunderstanding of processing. Consider it. 

If you’ve ever seen those posts on facebook with scrambled letters with just a few letters in the correct spots, yet you are able to read the garbled mess without much inconvenience. This is because your brain literally interpreted the mess and found the meaningful data and translated into words that made sense to you? It’s doing this all the time. Every communication, interaction, etc…  

We’ve all heard that Mannies are wired differently, but no one explains how much or how to even put it in perspective to our own experience. Years of research fall flat as therapists, researchers, and doctors ask the wrong questions. Or the answers they receive fall on deaf ears. They are incapable of  translating the information they are receiving into a way their brain can process it and relate it to themselves. Sound familiar? Just like my husband couldnt process my requests, we have been misinterpreting the data they give us for years. Questions like “What does it feel like to be on the spectrum?” Has no way to make sense to us because we do not have their processing system. Like trying to install a program on a Mac that was designed for windows.  We think we can interpret the answer. We’re confident we can. When they reply that part of it is that they feel like theyre feeling so much sensory data coming in at once that it feels like theyre trying to drink from a fire hydrant. Our brains automatically interpret the description as EXTRA. Extra is the only meaningful way to translate that for our minds. So researchers run off and try to examine brains and do studies to understand “why Spectrum individuals feel extra.” Getting nowhere significant, these have led us on wild good chases for far too long.  They assume that when they describe the onslaught of data that it’s EXTRA because theyre unaware of the work their own brain does automatically at the subconscious level. The real situation is theyre not feeling extra necessarily, they’re processing all the data CONSCIOUSLY, this is what causes the insane amount of mental stress. They are painfully aware of every detail of every piece of data they receive, because the brain reviews it PERSONALLY.  Stop and read that again and think of the implications of what that truly means. This is a CONSTANT, NONSTOP fire hydrant coming at them in EVERY direction. So yeah, for one “guy” doing all the work that is normally done automatically and unconsciously by “robots” as I call them, it feels like a TON of work, because it is! It’s an impossible workload actually. I had to try to reverse engineer and think of all the things my brain does, its impossible. I can’t fathom all the things hes trying to juggle at any given moment. I love watching the show brain games (check it out) its amazing. But I havent even scratched the surface yet of what this means!

And the real question to then ask and research is not why are they feeling extra, but why is this not automated for them? Can we rebuild these automations that are sitting dormant in their minds? Can we help connect these wires? How can we help them out of the distress they’re are actually in?

The short answer we found out. Is YES!  Yes, to all. And this is what we want to share with all of you. 

We know the brain is amazing, when we stop and think of all it does, it blows our minds. I’m sure we’ve heard or seen stories about people recovering from  brain injuries or trauma or how the brain can compensate for damaged regions.

Researchers are still scratching the surface about what the brain is capable of.  I have never come across anyone who has been able to relate that to the struggles of individuals on the spectrum. Even if they have. How would any current methods of therapy used for brain rebuilding apply to them? How would we create instructions they could interpret that wouldn’t cause more distress than they’re already experiencing?

It all came down to having a full picture. Or at least a full enough picture. All this time we’ve zoomed in on different aspects of the spectrum, addressing the smoke in the trees, but never considering the smoke was coming from a fire inside a house. 

When we first had this discovery, it didnt happen in complete order. I followed the smoke and stumbled across the fire. My original post focused a lot that there was a fire and how to put it out. But to understand what started the fire in the first place is so important to prevent the fires from happening again. I didnt get to what started the fire until my later posts or added it in later revisions. Even though I didn’t discover it on the first day. I still was able to come up with a method that helped him put out the fire on the first day. My appreciation and shock for his experience didnt come until later the next day when I saw the root of what was causing it.

In that monumental tinkering session that changed our lives, I finally gathered meaning that made sense to me and made all the other previous notes I had taken on him MAKE SENSE. I could finally put it into some perspective.

1. I realized he was sorting things into 2 fundamental brain piles. Two categories. He had mentioned this a bunch of times at the surface level, but it finally dawned on me the source of where it stems from. *This was the fire.* (Keep/toss, necessary/not necessary, understand/don’t understand, save/trash) This was operating at his core and because MOST things in this world didnt make sense, his TRASH bin was completely overloaded all the time dealing with stupid people, things, ideas, etc… and trying to interpret the data for which it had no place to go. It was literally a dumpster fire.
2. This was NOT related to intelligence. It was a processing issue. Not an intelligence, moral, spiritual, character, ethical, or any other type of deficiency. The only deficiency was a mental energy (explained later)
3. He could have lots of sub piles/categories/boxes within these two main ones, but it was still TWO. Really only ONE, since the keep pile was the only pile he could place value on. He could not naturally apply value to things in the trash bin or things within it unless he was forced to by someone or something else.
4. I noticed the characteristics of his first category, what made sense to him. Things that were logical and had patterns and a purpose he deemed important. This was where he stores his interests, things that make him happy and mental harmony.
5. I noticed the characteristics of the 2nd category, things that made no sense. The brain wanted to reject the data sent here, it had no value and was a waste of mental energy. Anything that didnt make sense, appeared to not have a purpose, chaotic, stupid, wasteful, irrelevant to him, etc…
6. I noticed the trash bin was extremely distressing. Anything here required significant mental energy to process. Posing a huge threat to his mental well being (I found out why later)
7. I noticed he was distressed when he was told to care/store/process/file away/keep/ understand anything that did not make sense because the mental energy required to hold this data without processing it was extremely taxing and could only be held in the trash bin, which was anywhere outside of his necessary box, so it was a HUGE trash bin. Most of the world lives in the trash bin.
8. I also noticed that data his brain interpreted as ½ keep ½ toss had no where to go except the trash. ONLY things that 100% made sense could be filed in the keep pile/file/box, etc…
9. I was shocked to see that he didnt know that other people had necessary boxes (keep pile) of their own, and they wanted to share the stuff in their box with him. All this time he thought he had to put it in his own necessary box, and when it wouldn’t fit, he had to put it in the trash and hold it there as long as he could stand it.
10. He was too busy dealing with the onslaught of data to look up and notice what other people were doing with their boxes, how they were able to file share, and what that meant for him. He was too busy buried under piles of brain files needing to be processed.
11. It dawned on me that he didn’t have thousands of categories in his mind with millions of subcategories within them. I mistakenly took all his subcategories as being MAIN categories similar to mine, thinking he was processing everything into tons of boxes too. He was dealing with 2 categories at the core and it was clogging his system to try to throw everything in the trash. He couldn’t empty the trash fast enough before it was filled up again. Lots of categories in the trash. Even if he could empty it constantly, since thats where he had to keep my files, he knew he had to hold it until his brain involuntarily ejected it.
12. Knowing this, I explained that there was other core categories he could use to sort all the stuff that was stacked up and soffocating him. He could sort them into the new boxes so it wasnt all clogged up anymore!
13. The first new box was where he could store things that came from other peoples necessary boxes. These things are important to those he loved and enriched their lives. I explained that even though those things appeared pointless and that they didnt have a place, they actually DID have a place in this new box. This box has a purpose because the purpose of this box is THEIR HAPPINESS. He told me he felt his BRAIN LIGHT UP. I called this box the enrichment box. (You can rename it whatever you want.)
14. Because he only had two before, all this time he assumed we were asking him to let us share our files into his necessary box. He knew they wouldn’t fit but would try to jam it in until he couldnt. He desperately tried because I always told him I wanted it to be important to him. The brain rejected them from this box. He quietly fought his brain to hold them in the trash for as long as he could, until the next time he got too beat down and the brain ejected everything. Including my stuff and then I would get mad he threw my stuff out, as if he did it on purpose.
15. He got worried that new boxes meant more work and that the files in this category would then be as heavy and daunting as the files in the trash. IT DOES NOT. And I explained there was simple criteria he could ask himself whenever his brain was trying to sort the data there. (I will list below with the new box, pattern, and Risk Assesment chart)
16. One reason many things caused so much mental distress, is because the brain could NOT process something so pointless existing. It got stuck at the absurdity of the existence and the brain keeps trying to figure it out. The mental exhaustion would be like wrestling with a crocodile. Exhausting and dangerous.
17. Another reason everything was so exhausting, was because each request or input required him to first determine the level of energy (mental, emotional, physical, etc…) it would require to complete the request. This constant “inventory of resources”was incredibly abstract and DRAINING. A question like “Can the kids sleep over at grandma’s tonight?” Was extremely stressful when I wanted a fast answer, many times he would tell me the answer would be an automatic NO if I didnt give him a 3 day heads up.
18. I stopped and realized that my brain was able to determine all my resources automatically at once, and see that things were either “no skin off my nose” or an unrealistic expectation and do it in less than a few seconds. I had to really stop and think about all the areas my brain took inventory of to come to that conclusion. I came up with the questions and chart I mentioned above. To find out if the information was safe to store in the new box he just had auto ask a few questions to determine if this was the appropriate box, rate it on a chart that would represent his resources available to fulfill the request. When he could easily see that the Risk was low and the Benefit was high, it was clearly the logical choice to engage in that activity or fulfill the request. He could finally see that 95% of the things I was asking was NOT a threat to him.
19. The other box was the Beyond Control box. I created questions (I also got his feedback for the sorting criteria) and made another chart. This time it was to evaluate if you had the resources to change the circumstances. If you did, you can attempt to change it. IF not, he could safely store it away in Beyond Control and put his brain out of mental misery. You cannot worry about things you can’t change. It’s illogical to waste mental energy on it, especially if there is no benefit or requirement to do so.
20. After this we were super happy. Mind blown! He was so happy. I’ll expound more on how transformational it was down below and why this concept explains every aspect of his behavior and explains every issue in our relationship.
21. The next day my brain kept thinking but WHY? Why did he have 2 Categories?
22. Survival mode had made his brain shut down to two sorting piles. Really only one. The brain hunkered down to focus on surviving, it did this by shutting down other areas, keeping only what was familiar and rejecting what was foreign.
23. Why was his brain in survival mode? because it couldnt handle all the data that was coming at it
24. Why couldnt he handle it all? Because he was manually processing and at a dramatic disadvantage in being able to handle the onslaught. He HAD to resort to survival mode, or his brain would have turned into a vegetable. *THIS IS WHAT STARTED THE FIRE.*
25. Why was his brain a manual processor? Not exactly sure why, but I have a few ideas. (That’s for another post!)

OK so the two new categories

The two new categories that we came up with were Enrichment and Beyond Control. Between these two he could sort mostly everything, this also reduces the amount of things that need to go to the trash bin and it fills up slower. That’s a win/win.

Name:Enrichment

Purpose: The place you store things that have been marked as important by loved ones because these things make them HAPPY and ENRICH their lives. All the things she tells you are important to her that she wants YOU to care about belong in this box/folder. Her interests belong in this folder. Her clothes, her hair. Pay close attention to this box when it pertains to her feelings, feelings are often from her OWN necessary box. The benefit of this box is that this box brings joy to those you care about. Sorting and processing these things help your loved ones feel loved by you and become closer to you emotionally. This box is a safe space to be with those you love so you don’t need to be miserable any more.

Method for measurement: Available Resources/Risk level VS. Level of Happiness

Start with Stimulus/ Item to be examined:

1. Ask yourself if this is important to someone you care about? (If no, examine with beyond control box)
2. Ask yourself if it requires more of your resources than what you have or are capable of using. **SEE WELL BEING RISK ASSESSMENT CHART** If there is a category where the risk is too high, ask if you can negotiate the terms to bring the risk to a reasonable level.
3. Identify the purpose/benefit ?(the level of happiness it would bring to the person you care about)
4. Does the purpose/benefit outweigh the risk associated? (most things are very clear with low risk and high benefits, instantly relieving pressure)
5. Can this be reevaluated again if circumstances change?

Conclusion (final sorting place): Safe to file to Enrichment

Well Being Risk Assessment Chart

Mannies: This chart helps you protect yourself and your mental energy, it also helps you to see that many requests do not actually harm your resources and have great rewards! This enables you to enjoy the time you spend in the enrichment box.  It helps you create healthy boundaries and provides a quick and pretty accurate representation of the risk associated with what’s being requested of you. You don’t have to do what everyone else wants you to do ALL the time. YOU are NOT all of a sudden a DOORMAT. You CAN, however, identify possible risks/damages, and compare them to what is at stake, along with the possible benefits and make a logical, reasonable, and fair assessment of your situation.   If the risk is still high, but the people you love are insisting it’s important or crucial to meet their requests (most likely the request comes from their own necessary box), you can ask for negotiation to bring risks to a manageable level. Life is not free of risk or expenditures, so you will sometimes need to still expend some risk. 

So consider the sleepover situation. 

Stimuli to be examined: Sleepover

1. Important to boys (and grandma)
2. There is zero risk in all categories in regards to my resources, there may even be a couple possible benefits, there is low to zero risk for the boys (they dont have homework or other prior engagements)
3. Benefit: Makes the boys happy, makes grandma happy.
4. Yes. The level of happiness is high, the risk is low to none.
5. Yes, if plans change and we find out there is a conflict, we can change our minds.

This decision was made incredibly fast, it didn’t take 3 days, it was determined to not be a threat, but a benefit altogether. He could let them go on the sleepover without being stressed that he was forgetting to address a risk. His load was lightened considerably.

We ran through a few scenarios for practice.

Stimulus: My wife likes to buy fake eyelashes. This is something she enjoys. I used to see no logic in it, it was useless to me. I wanted to discard it. It does NOT belong in my necessary box. To determine if it belongs in the enrichment box or the Not Necessary box, I’ll ask myself these questions.

Is this important to someone I care about? YES

• Is it causing me harm or inconvenience in any of these categories?

• Physical? No

• Financial? A little bit, she gets good deals and it’s pretty cheap. Affordable for sure.

• Mental? NO

• Social? No

• Job? No

• Emotional/spiritual? No

• Time? No

 Does the purpose/benefit outweigh the risk associated? Yes, the risk is low, benefit of her happiness is high.

Conclusion: This is a very low-risk inclusion in my enrichment box. Her happiness would far outweigh any form of inconvenience on my end. This NO longer bothers me. In fact, I can notice how happy and confident she is when she wears them, her happiness makes me happy and I find her more attractive, I also want to be near her.

Remember, it's easy to not be bothered by the enrichment box because THESE THINGS STILL HAVE PURPOSE. And while you would NEVER file them in YOUR NECESSARY box, you understand it makes other people happy to be in that enrichment box. You don't NEED to tolerate this box. It NO LONGER BOTHERS you because it's no longer a THREAT to you.

For example. The kids are playing video games together

Stimulus: The kids want to play video games

Is this important to someone I care about? Yes

Is it causing me harm or inconvenience in any of these categories?

• Physical? No

• Financial? No

• Mental? No

• Job? No

• Social? No

• Emotional/spiritual? No

• Time? No (they’re using their allotted screentime)

What is the new purpose for this? They enjoy it and they are bonding.

Conclusion: Zero risk inclusion into Enrichment box.

ok so for now, we file away this situation as ENRICHING. The kids are having fun together. That’s great. 10 minutes later the kids break out into fighting and he has to REVISIT this situation again

Stimulus: The kids want to keep play video games

Is this important to someone I care about? Yes

Is it causing me (or others) harm or inconvenience in any of these categories?

• Physical? yes moderate to severe physical harm, someone threw a controller

• Financial? Maybe, if the controller is broken.

• Mental? This fighting is overstimulating me. A LOT

• Emotional/spiritual? yes, there’s name-calling and screaming!

• Time? No (they’re using their allotted screentime)

• Job? No

• Social?No

What is the new purpose for this? The kids are mad, but they still want to do it.

Conclusion: The risk is high, you can request the situation change or they can stop playing for a while. If they do not adjust the risk level of the mental and physical categories, it will get filed away into NOT NECESSARY. He can now choose to turn off the video game and tell the kids to do something else. Etc…

He can revisit that decision later and put it back in the enriching box. Everything is fluid and interchangeable based on situations and circumstances. Something that used to only be easy for auto processors. My Manny was able to do that effortlessly and on his own.

THIS IMMEDIATELY IMPROVES FLEXIBILITY IN THINKING

I explained that he will constantly be filing things away and that he will probably revisit the same thing several times and it might change multiple times in a day. Something that would never happen in a 2 box system because it would NEVER APPLY THERE.

Also, once he applied this a few times, he didn’t even have to consciously think of the process anymore. In fact, only a couple days later he thought he forgot about it because he wasn’t consciously thinking about it. His brain had started to zoom through the steps. I had to point out and show him how his brain had shortened the steps, created shortcuts and basically started to become automatic. It improved the quality of life he was living by leaps and bounds.

Practice Practice Practice

Remember those sight words, if we practice these shortcuts enough, it will become second nature, we can help ease their mental load. But just like with anything else. It might not be completely instantaneous, gentle reminders, and even physical reminders might be helpful! For my husband, it took using these a few times and his brain already started to run through the steps. I added the criteria for the Beyond Control Box in later posts.

Why So Many on the spectrum are practically geniuses!

Because Mannies thrive on predictive, consistent patterns (their brains are extremely efficient at patterns, predictability, etc…) These type of intellectual things DONT change (math, science, music, etc…) they don’t need to be reexamined, their brain forms automatic short cuts, enabling them to understand COMPLEX materials so easily WITHOUT much mental energy. It’s practically superhuman. This part of their brain runs as effortlessly as our social part. Their pattern detector has become a super beast because they rely on it as much as possible. Like a blind person who has enhanced hearing, the logic and analytical portion got hyped into beast mode.

Neurotypicals don’t have a reason to have a hyped pattern detector, so they can’t flex when it comes to this. I’m honestly not ashamed to say I’m just not as cool as them.

So many Mannies get bogged down with the other mental energy-draining activities, like “basic” functioning in social situations, that harnessing their other superpowers might not be possible. This can leave them feeling miserable, unfulfilled, and with untapped potential.

These Mannies, who seem so insanely complex, are actually painfully simple. They’ve been trying to tell us this for years.

Mannies love to live in and function in their necessary box.

WHO WOULDNT. This is their happy space where all is right in their world. I call this my husband’s hamster wheel. He would be perfectly content with all his necessaries and never having to leave that space. (his special interests live here in this box too)  However, its when I need him to step out and interact outside of that necessary box that we are met with issues.  This is safety and security and predictability for them. A world where their brain doesn’t have to work so hard to perform. They will ALWAYS CHOOSE THIS BOX IF GIVEN THE CHANCE! NO DOUBT. Who wouldn’t. The only place they have self confidence and aren’t being torn apart. The second they leave to enter the trash world, we’re ripping them to shreds, telling them they’re failing when they’re doing their best, and never happy with their efforts. Ouch.