One of the first questions people with autism ask after a new diagnosis is, “Do I need to tell everyone?”

The answer to that question is simple: No.

With caveats. There are always caveats.

Legal Requirements

In the United States, there are no rules or laws that require one to disclose an autism diagnosis. This is covered by HIPAA1, the Health Insurance Portability and Accountability Act, which does two things. If you disclose to an employer, that person cannot share your disclosure with anyone else and can’t use it against you. It also means you don’t have to share unless you need some kind of accommodation, and the accommodations are protected under law2.

However, the question of whether or not to disclose outside of a professional or academic environment (also protected by HIPAA) is a personal one.

Personal Considerations

When I’m asked this question3, my answer is: it depends.

On what?

It depends on who you want to tell, who you feel like you need to tell, who would benefit from knowing, and who will be most supportive. The list of potential recipients and reasons is pretty long and broad.

My Experience

When I was diagnosed, Erin and I decided we weren’t going to hide my autism diagnosis. We also didn’t feel the specific need to share it with everyone and as a result, when it came up, we were direct and open about it.

Back in those days, people we told were within the varied communities of which we were members. As we were still religious and attending church, we let people in our congregation know.

I shared it with my parents and siblings (more on this) and Erin let her parents know. When it came to the workplace, and as this was relatively new and what I didn’t know or have experience with was pretty much everything, I disclosed to coworkers who had to navigate my often dismissive attitude and the intensity with which I would tackle projects.

As some aspects of my job started to fall apart, I let my immediate manager, the site VP, and a member of Human Resources know what I was dealing with. Of these people, the one from HR used it as a weapon to attack me, as though I was making an excuse rather than explaining what had changed and how I was attempting to improve my work and workflow.

Disclosing in Professional Settings

As a teacher and substitute, I let my students know, mostly because I wasn’t going to get involved in the drama that exists around large concentrations of people and partially because I was still trying to figure things out and having people ask questions caused me to look for answers. While “I don’t know” is and always will be a reasonable answer, not knowing forever, for me, isn’t okay.

Disclosing to Family

Telling my parents and siblings led to some pretty dismissive behavior. While I believe (or want to believe) my parents will accept this in their grandchildren, they are equally as unlikely to accept it in me. What I ended up telling my siblings is that now that I had some answers to some of my questions, our relationships needed to change, and if they wanted a relationship, I would put in the same amount of work as they did. Eventually, though for many different reasons, this also applied to my parents and as a result, I don’t hear from or communicate with my parents and most of my siblings.

Advice for Disclosure

Which leads to what I tell people now.

If you feel the need to share your diagnosis with people, choose someone you know and feel like you can trust, someone who might benefit from knowing, and tell them. See what happens with someone who is supposed to care about you. Find out how they react and the questions they ask.

Understanding Relationships

What will happen is that you will begin to figure out the relationships you have and how important you are to some people. The ones who matter will support you and while it may be hard (it will be hard), they will do what they can, within their limitations, to support you.

It’s here that things get a bit important because these are also the people you’re going to ask for help in social situations, with emotional and non-verbal language. They are the ones to whom you can say, “I want to go, but I can’t tonight because I’m too worn out. Can we reschedule?” (Always reschedule.)

Implications of Disclosure

From this point, you can choose who you tell, but (and this is why trust was included) once you tell someone, you are giving away part of your right to keeping your diagnosis entirely private. People are going to find out. They’re going to mention things, though not always (or even often) with malicious intent. The people in your life are going to start to know no matter what. And that changes things.

Accepting Change

Change isn’t a bad thing and while hard, with time what starts out as hard, with practice, becomes easier or, with enough time and exposure, you will be more capable of handling setbacks and people who are being themselves, people who are peopling.

Conclusion

The one truth I know is that whether or not you realize it, autism was a part of your life before a diagnosis and it will be a part of your life after. The difference is knowing and then adjusting what you’ve already been doing to what is now your known reality. Ideally, nothing should really change, except for the need for different kinds of support, but in reality, a label changes people and that’s what you’re trying to understand and work toward a positive outcome within that change.

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The top of the form was data:

First name

Middle

Last name

Date of birth

Address

Phone number

E-mail address

Which is pretty standard for a lot of forms these days. Get contact info out of the way. Maybe there's proof of insurance or proof of identity, but otherwise, it's a basic form.

Then, and I believe this is important, we begin to deviate. The next question is a pair of checkboxes:

NT or ND1

This is an important distinction when filling out this form. Because, in my mind, what you choose dictates what follows. In a strictly paper world, it would be a series of 'if this, then fill out sections 8, 17, 42'.

In a digital world, checking the NT vs ND box changes the form entirely.

The form would include sections on Theory of Mind and Executive Functioning skills. It would delve into a history of possible abuse or bullying. The contents of the form would help inform how a therapist is chosen and the best doctor to have, as the presentation of symptoms in treatment and pain expression may be different.

Theory of mind is often considered the empathy aspect of our thinking. One misconception about autism is that people with autism lack emotions. While emotional expression may be limited, a lack of emotions is false. Rather, I propose the defining in Theory of Mind is one of processing time vs an ability to see the significance within an emotional situation or event and respond appropriately.

Executive functioning skills are those skills that allow you to plan ahead, have access to recent memories, before they become long-term, and to make realistic and achievable goals. When these areas are lacking, as with ADHD, then getting things done or accurately preparing for the near future becomes a problem. One that I try to fix by writing things down, putting what I need to remember in my phone, or asking the people around me to remind me if I forget.

Things like this become a tool to help determine next steps and best practices. What I understand as Normal Protocols in medicine take a new form when it comes to the whole body, whole mind approach to someone whose brain is literally wired differently.

One of my posts, recently, was on autism profiles and used PDA or pathological demand avoidance as one example of an autism profile, you can read that post here. But a profile is more than one thing. It's more than just autism and a specific flavor of autism. It should encapsulate the experiences and life of an individual in a way that helps positively inform best practices for their life, but doesn't go so far as to cause problems for the individual when seeking treatment, additional supports, or help.

The profile should list specific parts of the autism experience and how much support is needed for each one. What medicines have been tried, which medicines have been more effective, and which medicines have been less effective. The same would be true of therapy, interventions, medical visits, possible social interactions, and so on.

What is true in an autism diagnosis, and I’m guessing in medical and therapeutic notes, are the reflections of the professional, their observations, and in some cases guesses and assumptions about what’s happening and what needs to happen.

All of this is good (though some of it may be construed as bad, and rightfully so), but all of it, when combined together, helps to create a whole person view of autism (or not autism) that, when applied correctly, allows for better and more informed levels of support.

When I go see my doctor, he has in his notes that I have autism. If the conversation and visit begin to veer in a direction that indicates to me he isn’t keeping autism in mind as we go through the process, I bring it up as well as any relevant reading and material that might help to inform the outcome of my visit in a positive and progressive way.

The same is also true when I go to the emergency room, regardless of whether I am a patient or accompanying caregiver (not often, thankfully). My objective in these instances is to allow the medical professionals to know two things: I present differently than most of the people they are dealing with; and, I may not always respond appropriately or at all to what they are saying. I’m not asking for anything special. I don’t want to be there in the first place, and I understand the ER or even Urgent Care (staffed by the ER in our area) has a primary goal of getting people in and out, stabilized if possible, with a referral to their regular doctor and not necessarily to fix what’s broken.

Since things like this are meant to be symbiotic, hopefully, with the onus of care and medical decision making through a primary care provider, this relationship and associated limitations make sense to me.

So much so that when establishing relationships with Command's (and Camper's) pediatrician's office, it’s important to recognize and reaffirm that Commander is autistic and therefore needs different kinds of attention than Camper. Since I’m the stay-at-home parent who takes both boys to the doctor (and dentist), letting them know part of my autism profile is also necessary as I’m also the primary decision maker for the boys.

Knowing Commander’s general profile and then adjusting and adapting for it as he grows older (also the main reason I started following the PDA information path) allows me and others to adjust our expectations and help adjust medical or others' expectations toward what is most likely to work. Like me, Commander has an insanely high pain tolerance. Like me, he’s resistant to being comforted when hurt. There’s a whole list of these things that might make either Commander or me seem distant and detached, but when recognized, offer a more robust and clearer view of what’s happening.

All of which is good.

And all of which needs to be captured and shared, when appropriate. While my form idea may be a starting point, the other reality is that it also needs to be considered in terms of the right to privacy and the right to disclose or decide not to disclose to others.

Ideally, this wouldn’t be a problem as NT would also have a form and a profile, and their needs and scaffolds, the things they present, would also be part of the much bigger picture. When information about someone is shared, as in a classroom or academic setting, that information is there to inform the teacher, professor, or whoever is in charge of what changes need to exist for different participants and not as a mode of disclosure, but as an extension to the right to privacy.

Ultimately, I believe, by embracing a culture in which people, as in individuals, start to look for answers and begin creating personal profiles and then insisting on using those profiles in collectively beneficial ways, we will end up in a world and in cultures that will better embrace differences and more instinctively adapt to the different needs within a community for both individuals and the collective group.

One might be forgiven for assuming, upon entering my sanctum sanctorum, that my intense obsession is books. While I’m absolutely certain I don’t have the most books, and there are definitely others who have significantly more than me, the number of books is pretty impressive, and the variety may even be somewhat eclectic.

A Deeper Interest

What isn’t true, however, is that I am particularly obsessed with books as much as I’m interested in what’s inside. And yes, it is also true that I possess in my collection books on books as well as books on bookbinding. It can get a bit meta if you let it. Also, these books include books on designing and making pop-up books, something I’ve yet to attempt.

Academic Background

Since my bachelor’s degree is in English and Literature (though between when I started and finished, the degree changed to just English), and my Master of Fine Arts is in writing, you may also assume that I have a lot of literature and quite possibly books on writing. And for both of those, you’d be correct.

Diverse Topics

In addition to those specific areas, I also have books on technical writing and grant writing. The specificity of some topics can be pretty interesting and yet, few of those topics are so entirely unique as to justify an entire book written with the intent of explicating that specific sub-genre or subject matter.

Genres and Preferences

Then there are the books on other subjects: the American West, for example. While an interesting subject, the literature that crosses over from an interest in the subject (as in, to know about) and the subject as a genre. The same can be said of most areas where I possess an interest in, but not a passion for the topic. Consider having an interest in England and yet finding most of the writing of Charles Dickens onerous.

Visual Storytelling

The same can be said for visual storytelling (as in comic books and graphic novels). I have plenty ranging in appropriateness from child-friendly to very-much-not-child-friendly and a lot in between. This is an area where I have a lot of high hopes and, against most of what’s written about or for the market, very little satisfaction with what’s offered. While I do enjoy a good superhero movie (looking at you, MCU), I don’t particularly enjoy superhero comics. What had once been a way to escape the real world and enjoy an amazing place and people, has changed and evolved so little or not at all that my opinion of superhero comics is almost nil. And don’t get me started on what the DCEU did to characters I already thought were overused and ridiculous. Except for Wonder Woman (the first movie, not the second one), that was good stuff.

Learning and Mistakes

My insertion into the world, or a subject, or an area of interest or mastery, begins with books and extends to making some pretty amazing mistakes along the way. Messing things up just to figure out what I did wrong and then trying again or trying to fix the problem.

Challenges in Learning

Sometimes the learning comes easy, mostly because I can transfer what I know about one subject or area to another with only a bit of adaptation or adjusting. Other times, as with foreign language acquisition, the process takes a lot longer and is influenced by aphantasia and demand avoidance (complex anxiety and overreaction to not being perfect).

Conclusion

While books are definitely a mainstay in my life, and for a long time were the escape I needed, they aren’t the special interest as much as they are a means for me to find and do new things, experience new ideas, and explore new places.

I was diagnosed with autism in 2013, and it was not a good day for me. To set the scene, it was a Friday in January. We’d been through a few snowstorms since the holidays. The sky was grey. The roads were wet from snow melting off. There were piles of snow along the sides of the road, and I had to leave work early for the appointment where the results of a couple of years of intense looking for answers were about to take place.

The Supportive Wife

While Erin had been the first to suggest I needed to look into autism (Asperger’s), she’d taken a back seat to most of my journey through therapy and reading and connecting with the different professionals who were part of the diagnostic process. This was the first and only appointment she went to.

The Diagnostic Process

The appointment with the neuropsychiatrist went over the many tests and assessments she’d conducted weeks before, from an IQ test to the Rorschach test (ink blots) to all sorts of things.

Before the neuropsychiatrist, though, the process included other specialists who interviewed me to eliminate other possible causes for autism-like behaviors. These could include past abuse or trauma, and while some of that does exist in my life, the purpose wasn’t to point at a specific event, but to eliminate the possibility that an event or series of events could be the cause of my autistic behavior.

Holding Out Hope

Up until that grey and wet Friday, a part of me had held out hope that I wasn’t going to actually be autistic. Instead, the professionals would determine that I was dealing with something else, something that could be treated through therapy and awareness.

Around 3:40 on that Friday, though, the neuropsychiatrist got to the point in the meeting where she explained that I was, in fact, autistic and did I have any questions?

Erin had some questions. I had a lot of processing to go through. Along with the processing, I also immediately fell into a state of despair and depression because, for the first time in my life, I’d been told I was never going to get it. I was never going to be normal. I would never walk into a room and get a true feel for it.

Realization of Being Different

I was different. Different is an okay thing to be, and one of the conditions of being Erin and I try to instill, without focusing on it, in Commander. As a child, one who is in some areas way too smart and in others very immature, this makes sense. Unlike Camper, Commander isn’t immediately going to public school. We reviewed the programs available and the people running those programs, and we found the use of ABA and the attitudes of the teachers uncomfortable.

Being different really isn’t bad until it is. Even so, what caused me to fall into a state of private depression and despair was that I’d spent most of my life, since at least becoming a teenager, trying to figure out why and also thinking I’d figured out people, life, relationships, and other normal interactions.

I’d thought I’d figured out how to interact with people.

And I hadn’t figured anything out at all.

Reflecting on Interactions

I could go through what I would call a clinical explanation of things. Talk about relationships and communication. Wax poetically or philosophically about the nature of being with someone. But that was all books and observation. There was little to no practical experience in any of it, regardless of what I thought.

It took me years and a lot of unexpected and not really important interactions to begin truly seeing what it meant to be autistic. For example, I delivered pizza for a while, and one really busy evening, the deliveries slowed down enough I could take a breather, and one of my coworkers approached me to ask, “Which side are you on?”

What?

They then explained to me the assistant manager and his girlfriend, another coworker, were having a fight and everyone was taking sides. It’s like Team Edward or Team Jacob, and I was expected to pick a side.

Fortunately, I needed to deliver a pizza and could blow off the question and implied drama. What was also true, and hadn’t been before, was how unaware I was of social situations like that unless they were brought to my attention, or I have a pressing need to observe what’s happening and draw my own conclusions. In this case, I was never going to need to know or observe, and the only way I could know was to have it pointed out to me.

A Blow to the Ego

This was, for me, yet another blow to my ego and sense of self. It showed how little I picked up in even casual interactions with people I knew and mostly liked. Like being given a diagnosis of autism, I was shaken by how little what I thought I knew about myself didn’t match with reality or the world I inhabit.

Lack of Support for Adults

What is true for adults who are diagnosed is there is a complete lack of support and help. It exists, but there are no easy or visible mechanisms to connect adults to services. I had to learn what was available. Sometimes services were suggested to me by someone else, and often as an off-hand comment. At other times, finding help came by way of intense and varied online searches. Often being told about some kind of help, therapy or life planning or whatever, happened as the result of someone else I was working on or someone I was working with.

The Emotional Wreck

The other truth, for adults, even if we expect the outcome and prepare for it, is the complete wreck we can become because we were holding out hope for a different answer, a different reason, or a different diagnosis.

For me, I stopped producing things I enjoyed writing and working on because I stopped believing I could or that I had the right. That part of the autism diagnosis is still ongoing and difficult. I’m much better now. I’m progressing, but not before I’ve had to regress and rethink and build myself up again.

The Journey of Acceptance

What I’ve found is none of this is easy, and every time I think I’ve mastered something, that’s when it’s time to go back and review and maybe start over again. Being diagnosed with autism was one of the worst days of my life and the beginning of something big and important for me. It’s also something I wouldn’t change because the me I know now is clearer and more defined than the me before I was diagnosed and tossed into the deep end of coming to terms with an autism diagnosis.

Now that I know I’m autistic, how do I fix and maintain my marriage or the relationship I’m in?

Neurodiverse is a term used to describe someone who is neurotypical interacting or in a relationship with someone who is neurodiverse or autistic. As I mentioned in this article, one reason someone may choose to pursue an autism diagnosis is because of a relationship, such as marriage and dating, or parenting.

In my experience, I first realized a lack of answers about why I was different from others and out of a desire to ensure my marriage and family were protected. I wanted to give my marriage every possible chance to succeed, and because I had embarrassed Erin in front of her friends, I felt an immediate sense of panic and dread about the future.

One of my life goals was to get married and have a family. Originally, this goal was meant to happen around the time I turned twenty-five and definitely before I turned twenty-six, neither of which ended up happening. I had other goals revolving around turning twenty-five, but those can wait for a different time. The point is that I made a goal and missed it.

There are, of course, reasons for missing a marriage deadline. For example, I had yet to start dating seriously, I moved a lot, and I was pretty immature. None of which mattered to the external influences pushing me to be married and start a family.

In fact, I was thirty-three before I got married and didn’t start to seriously date until my late twenties. All of which suggests I wasn’t serious about my marriage and family goal, though I still maintained it as a goal.

Once married and having started a family, I had no desire to back out of a marriage or leave my wife and son without me. Which meant, as problems arose that only I could fix, I had to do my best to fix them.

Problems that only I can fix, as a point of reference, are personal behaviors, attitudes, opinions, beliefs, and mental health concerns. These are quite literally problems that exist for me as an individual and cannot be fixed by some outside source. Especially if I don’t want to fix them, work on them, or even consider them important.

Which leads to:

Changing for someone else is always a mistake. Changing for yourself is the only way change works.

Please note that this is almost 100% about me. I needed to change. I needed to recognize the problems. I had to decide change was both right and necessary. I had to seek help. I had to be willing to accept help. I had to be open to different kinds of change in attitude, opinion, beliefs, and so on.

While my motivation was externally influenced by my family, my needs were entirely internal.

I met Erin. I liked her. We started dating. Then we got married and had Camper. At each stage, I had to decide, and we had to decide – which meant Erin had to decide for herself, that this was what we wanted. Together.

While I can repeatedly emphasize ‘We’ in terms of our relationship, the initial responsibility begins with me (and for Erin, with her).

Which is also the first principle in making any relationship work:

You have to decide you want to be in the relationship; and, you have to remember why you entered the relationship.

What I’ve found to be true in the sixteen years I’ve been married is that I’m no longer married to the same person. Yes, I’m married to the same woman, but she has changed and evolved into someone entirely new and different from when we first met. Which means, we have to keep coming back to some moving starting line and in different ways decide we still want to be together. I have to decide I want to be with Erin, and she has to decide she wants to be with me.

The second principle is what I like to refer to as: variable middle ground. Which is a response to advice and the nature of care and decisions I’ve heard people talking about decisions as 50:50 in a relationship or implying that meeting halfway or finding common ground is literally halfway or in the middle.

For me, there is no true 50:50, there is never going to be equal or even the same in a relationship. One part of any relationship will always need more. More time. More money. More sleep. More comfort. More attention. This suggests, to me, that the variable middle ground is going to fluctuate and change, the person who needs more is going to switch back and forth, and while there may be times when the needs are greater for one person and more often, this isn’t always going to be true.

Life is change, and everything about life is change. This is true from the simple act of growing older, both inevitable and constant, to changes in health, changes in occupation, quality of life, and so on. Recognizing there isn’t a single answer and there will almost never be one-and-done answers to problems in a relationship, in life, or personally also leads to the recognition of the need and willingness to always come back to decide what’s next. What’s important. Who has the greater need. What needs to change and who needs to give more and who is going to take more.

There is almost never a point when everything will be decided and settled, and because of this, change has to be a constant in any couple’s life. We don’t go to bed to Leno because Leno isn’t on anymore and we never went to bed watching talk shows or anything else. I won’t fall asleep if the TV is on or there is active noise that varies and changes. For a period of time, we didn’t end our day without reading chapters out of a book Camper chose for us to read and only now is Commander really allowing me to read books that have chapters and takes a lot of time to read from beginning to end.

The third principle is one of self-recognition and awareness of others. It’s to recognize that while a lot of the decisions and changes and self-care are all internal and selfish, the relationship changes that and introduces an external element or selflessness. Selflessness in a relationship is both making decisions that are selfish and also allowing for the possibility that some decisions require more than one person and more than one point-of-view that has to be considered.

Personally, I have very strong opinions about the books, movies, TV shows, and music I consume. Not everything is equally good. Most things don’t rise to what I consider worth my time, and at the exact same time, there are things that are complete trash I enjoy reading or consuming. For me, the best way to describe consuming poorly written or created media is more an homage to Finding Forrester when William Forrester responses to Jamal’s observation about him reading the tabloids. While it may not make me thing, it’s kind of like a dessert for my mind, it allows me to feel something different and to unwind.

While there are things I can watch or read with others, most of what I consume is entirely about my interests or my goals or what I need from entertainment in any given moment. However, there are also times when what we watch or read or listen to is directed by someone else, often Erin when it comes to music and Commander when it comes to TV and movies. Camper will also decide what we watch and we’ve put a lot of effort into help Commander understand that he has to share the TV and has to let other people pick what we watch, sometimes.

In our relationship, Erin is the primary breadwinner. I’m the stay-at-home parent to Commander. I’m also the one doing the homeschooling for Commander. I take Camper and Commander to doctor appointments, dentist appointments, eye appointments. I’m the one who is on-call in case someone is hurt or sick. It’s my job to pay the bills and to whatever extent necessary, maintain the household.

We recognize that Erin’s ability and need to work aligns well with my ability to be at home and take care of Camper and Commander (more Commander than anyone else right now). We’ve talked about these needs and desires in our relationship and have adjusted, many times, over the years to make things work. Which also means while I’m not now working, I have in the past worked and I will in the future work.

Everything in our relationship, it seems, is an exercise in growing and adapting the expectations of life to our reality of living. We don’t have what many today might call a traditional marriage or a traditional way of life. And that’s okay. What we do have is a willingness to work together and to keep working together until we get to where we need to be. Together.

For me, the scariest part of maintaining a relationship is when the talking and the working on things and the lack of finding out variable middle ground gets harder or stops. And sometimes, this happens. It’s almost always a problem of self-reflection and self-awareness over what I need and how I can be better.

The point of all of this is to explain how complicated and fraught with potential problems, especially with problems I have to fix, my relationship is and by extension any relationship is. And to say that while it’s difficult, while there may be struggles, while there may be times when things seem impossible, they don’t have to be. Not really.

The final point I’ll make is to say that even while these are my thoughts and opinions about marriage, I don’t believe there’s a single right answer for anyone or any relationship. What works for us, may not work for you. What’s true for us, isn’t necessarily true for you. And that’s okay.

We make a choice to be together, and if the choice works, we choose to keep making it. That’s all it takes. That’s all there is: recognize needs and what has to change; understand why you are or were in the relationship in the first place; and then constantly go back to the beginning, or a beginning, to figure out how to remain aligned and together in this relationship.

Some of the first questions that need to be asked when someone is finished with an autism diagnosis are: What do I do now? What comes next? What are my next steps?

Sadly, when I was diagnosed with autism, I didn’t know enough to realize there were questions that needed to be asked, let alone actually asking relevant questions.

Questions were asked, though it was Erin who did the asking. Since I was already in therapy and Erin knows my personality, she asked the neuropsychologist questions about therapists with criteria specific to me. The doctor offered to have another appointment if I had questions in the future, but by that time I’d moved on to other things and had other needs.

For adults, and this is mostly about being an adult who has been diagnosed as an adult, there are often mitigating circumstances that have led the individual to seek answers and pursue an autism diagnosis. The reasons can include:

• Problems with relationships

• Problems with employment

• Misdiagnosis

• General observation

• Realization of personal differences

• And so on…

These are reasons to begin looking and, often, when trying to write replies (on Reddit) for someone asking a question, I’m curious to know if they’re officially diagnosed or if they’ve self-diagnosed. I’m willing to accept either, especially given the international nature of Reddit and social media and forums dedicated to anything you can imagine, but there is a difference between someone who’s gone through the diagnostic process and someone who just feels autistic or somehow mentally and emotionally aligning with an autism diagnosis.

(For additional reading on how one university approaches the legitimacy of self-diagnosed autism.)

For me, the main impetus for me to seek a diagnosis was a meltdown I had at a wedding reception amongst people who would be (and are) considered important and influential. Though the presence of politicians, military leaders, business leaders, and others wasn’t what embarrassed Erin or caused my meltdown. The meltdown was caused by too little sleep and too much stimulus in the form of lights, music, noise in the form of people talking over each other, the number of people in a small space, and lack of information about things.

My meltdown embarrassed Erin because it was in front of her friends. What had started out as a fun weekend, a time we could get away from our (at that time) miserable lives and just be alone together.

Because I could see that this kind of behavior could lead to my marriage and family falling apart, I immediately started, for yet another time in my life, searching for answers to what I could see as differences between me and most people. My differences included experiencing things differently from others, not understanding interpersonal relationships despite spending years studying the topic, and always being tired. There were more, but in the context of this article, these should be sufficient.

The path from a wedding to my diagnosis took a couple of years and didn’t begin with me thinking autism or Asperger’s. In fact, and as I’ve written in another post, I couldn’t see in myself a special interest or specific fixation on specific things. The criteria were clearly written for children, and I was seeking a diagnosis as an adult.

The impetus for me was to protect my family. I knew if I could figure out what was different about me then I could begin fixing those problems.

Having some kind of emotional or intellectual alignment with autism was not enough for me. I needed to know. Needing to know meant one of two options. First, if I wasn’t autistic then we could dig deeper and figure out what was mirroring autism. Second, if I was autistic then the things I needed to figure out were more adaptive to my life and living and not prescriptive toward therapy or pharmacology.

Once diagnosed, what I initially realized was just how much that confirmation of autism would affect me emotionally. I was already depressed and being treated for depression, but knowing about autism shook me hard. I didn’t have any idea what my next steps could be or should be.

To pile onto this, I was soon laid off from the job I had and had to start scraping together work and money from part-time jobs, freelance work, and adjunct teaching. None of which contributed a lot toward our family finances.

The biggest post-autism diagnosis fallout was me hitting a wall with my writing, with a website about different fandoms, and an almost complete stop to me moving forward in many areas of my life. I hit a pretty deep and really long period of depression.

I had no idea that any diagnosis, let alone an autism diagnosis, could have that kind of effect. Which has led to figuring out some things that can be asked and some things that should be proactively worked on.

First, there is very little in the way of resources for adults diagnosed with autism. Unlike children, who have all kinds of supports and training, occupational therapists, people who are paid to come into the home to help out, and people at school who specialize in helping children with learning disorders succeed, adults receive a diagnosis, are asked if there are any questions, and then sent on their way.

Second, autism and ADHD have a high comorbidity rate. Which means for the vast majority of people diagnosed with autism, regardless of age, they also have ADHD.

Third, there are other comorbid conditions that also exist and once identified start to make sense. Depression and anxiety are two of the many. Asking about the additional conditions that are common as comorbidities and should be considered when an autism diagnosis is given.

Fourth, are the different autism groups and non-profits that exist. The one closest to me is AANE. They offer online and in-person meetups as well as support groups, training, adult supports, LifeMAP, and more. They previously went by the Autism and Asperger’s Network and are now branded as The Autism Association for Neurodiversity.

Finding people who are trained in and work with adults on the spectrum is an important part of the process. You don’t have to keep the people or groups, but finding people who experience some or even most of the things you regularly experience.

Fifth, find a therapist who is trained in working with adults with autism. AANE offers training for therapists to work with autistic adults or neurodiverse couples. This aspect of post-diagnosis is quite possibly the most important, though not the first.

There are clear differences between neurotypical people and their therapeutic needs and neurodiverse people (especially autism) and their needs. A common or typical approach to therapy isn’t going to work as well or at all for autism therapy. Unfortunately, recognizing this is a slow process and being willing to work with a therapist to help them understand specific personal needs is necessary.

Personally, I don’t maintain a therapist, though not out of a desire to go through them. My approach to therapy is often focused on specific needs or issues I want to work through and ends when I no longer have that need or I can begin to accurately predict what a therapist is going to do or their personal beliefs and feelings.

Finally, reading about autism in the forms of online posts, memoirs, books meant to inform parents or caregivers, as well as literature and studies will help in forming a better understanding of what it means to be autistic and how to approach the realizations of how you’re different.

What is important to remember isn’t that you’ve been diagnosed with autism. In reality, nothing has changed for you or about you except a new awareness about yourself. The most important thing to remember is that your job is to make your life better. To do this, you may need to have an understanding about yourself that you’ve never had before. Understanding autism and how it affects you is a big part of that.

These adverse reactions manifest as an autistic meltdown, which involves someone with autism becoming angry, shutting down, becoming unresponsive or violent, and ultimately entering a state where their special interest takes precedence over everything else.

An autistic meltdown is an intense response to overwhelming situations or environments and is commonly experienced by individuals with autism spectrum disorder. It can manifest as a sudden loss of control, resulting in a spectrum of behaviors such as crying, shouting, becoming physically aggressive, or shutting down and becoming unresponsive. These reactions are not intentional or manipulative; rather, they are a natural response to sensory overload, emotional distress, or an accumulation of stressors. It's crucial to understand that an autistic meltdown is different from a temper tantrum, as it is not a way to seek attention or get something desired. It is an involuntary reaction to being overwhelmed and is often exhausting and distressing for the individual experiencing it. It is important to approach someone experiencing a meltdown with empathy, patience, and a calm demeanor, and to provide a quiet and safe space for them to recover if possible.

For an observer not familiar with autism criteria and seeing ‘special interest’ highlighted prominently, it can be discouraging to seek or even pursue a diagnosis. I believe the difficulty exists with a lack of awareness in regard to what special interests are and how they dominate an individuals life and actions

Moreover, the media representation of autism, from ‘Rainman’ to ‘Atypical’ and other reality TV depictions, often exacerbates the issue by not only including the special interest but also by portraying it as taken to an extreme. In this case, with the special interest almost becoming the single most important personality trait for the character

However, it is important to note that not everyone with autism has a special interest, or more accurately, a single focus that can be defined as a special interest.

An autistic special interest can be defined as a highly specific and intense focus on a particular subject or activity that is common among individuals with autism spectrum disorder. This interest goes beyond a hobby or a favorite pastime; it is often something that an autistic person is deeply passionate about and may spend a significant amount of time thinking about, talking about, or engaging in. The subject of the special interest can vary widely from person to person, and can include topics such as a particular period in history, a specific genre of music, a type of animal, or a specific activity like drawing or collecting. For an autistic individual, this special interest can provide comfort, structure, and a sense of purpose. It's important to note that having a special interest is not a negative trait, nor is it unique to autistic individuals, but the intensity and focus of the interest is often more pronounced in those with autism.

For example, in my experience, a special interest is elusive. While I do have interests, and some become more important than others, I have rarely been aware of a special interest that overwhelmed every other aspect of my life. By not having the ability to distinguish between the ability to have an intense personal interest in something and a specific and all encompassing special interest, allowing myself to accept the possibility of autism was difficult

As a child, I was fond of Hot Wheels and Matchbox cars. I am told I had a considerable collection, but apart from a single memory of one car, which I cannot even describe, I have no recollection of these cars or this interest. This memory gap was partly explained to me before my child, Commander, was pre-assessed for autism. My parents revealed that, like Commander, I had loved cars, but they had donated all my cars to charity because I refused to pick them up.

Had my parents not shared this with me, I would not have remembered it, nor do I have access to these memories. Given some parenting choices I do remember, I am not surprised.

For me, a ‘special interest’ seems to be an area of intense interest at a particular period of time and not something that I’m particularly obsessed with over long periods of time. For instance, I buy and keep many books, most of which sit in boxes in the attic because there is no space for them currently. These books pertain to specific areas of interest and reach a critical mass, often associated with the amount of money spent rather than the desire for another subject-specific book. Unfortunately, this does not mean I do not end up with that book; it just means I either have to find it at a better price or wait to receive it as a gift.

After my autism diagnosis, I discovered movable types and manual printing presses, and, consequently, bookbinding. These interests led to new books and finding the necessary tools and resources to be able to explore what amounts to a hobby today. I built some things, made online requests for others, and there are items, like an old cast iron book press, that I want but will eventually give up on acquiring.

Stored in boxes, due to lack of space, are various toys I would love to display. I have a small collection of old 8mm cameras, an 8mm film projector, and 8mm film reels that I used for a while but had to stop due to space constraints. There are also broken parts and cameras that I can use to fix and restore more complete cameras. I can continue with the things I collect both with the intent to repair or restore and things I collect for some hard-to-define esthetic

Most of the O gauge trains I bought in 2019 with the intention of using and restoring are in storage because it is too expensive to do so at the moment. In retrospect, I probably should have delayed purchasing the trains as they require a significantly larger footprint than everything else.

Ultimately, my areas of intense interest vary based on my surroundings and family needs. Reading about autism remains an ongoing area of intense interest due to personal and parental needs and desires.

PDA is a subset of autism spectrum disorder that is recognized mostly in England. It is a form of anxiety that presents as demand avoidance or an increase in anxiety when the individual consciously or subconsciously perceives a demand. My interest in PDA extends from my desire to offer Commander, my younger child, a higher degree of understanding and help and to find ways in which we can, as a family, better communicate with Commander and help him continue to grow and develop.

For example, since my experiences and diagnosis are the primary factors in writing this Substack and in my attempts to understand autism and explain the condition, disorder, and comorbid conditions in easier-to-understand and relatable ways, let’s begin with a simple profile for me.

Profile:

Personal Information —

Name: John Hattaway

Sex: Male, identifies as male

Birthday: [redacted]

Parents: [redacted]

Marital Status —

Married: yes

Spouse: Erin

Children: 2, Camper (14) and Commander (5)

General Overview  —

Current Occupation: Stay-at-home parent

Notes on Occupation: John has worked most of his life, from delivering newspapers to building fences to working in various aspects of IT and technical writing. He has spent time teaching English classes at the college and high school levels. John’s primary problem with work seems to be either a lack of continued interest in any given job or being laid off when the company needs to reduce employee overhead.

The decision to keep John at home is practical, as he and Erin decided they didn’t want to put their children in daycare. Since Commander is also autistic, John’s role is both caregiver and educator, and he has remained the stay-at-home parent out of an abundance of caution in helping Commander grow and develop.

Diagnostic Information —

🟩 Neurotypical (NT) or ❎ Neurodiverse (ND):

If ND:

Autism Diagnosis: Yes — Level 1

ADHD Diagnosis: Yes — Severe

Depression: Yes — Severe

Anxiety: Yes — But untreated through pharmacology

IBS: Yes — Currently in remission

Areas of Interest —

Current Areas of Interest:

John likes to read and study new material. He has been interested in writing almost his entire life and went to college and received a master’s degree in fine arts in creative writing. He has not published anything in years due to some negative experiences soon after being awarded an MFA, though John now seems to be back to writing and submitting his writing more frequently.

One of John’s current interests is reading about autism as it applies to his youngest son, Commander. These readings serve two purposes: first, to allow John to assess the pediatric literature on autism spectrum disorder and related content for possible application with Commander; and second, to find the pediatric autism truths that aren’t being carried over into adult autism-related practices and care.

Most current or dominant area of interest —

Current ASD Area of Interest or Diagnosis Being Studied and Potentially Sought: Pathological Demand Avoidance, working with PDA in a classroom setting, language models for use with individuals who show signs of PDA (of which Commander is most likely affected).

Notes on treatment or future areas to work on —

Treatment or Other Forms of Intervention:

John takes depression medication every day and has committed to this level of pharmacological assistance. He has seen therapists in the past and, while not currently seeing a therapist, doesn’t rule out needing to continue therapy in the future.

End Current Profile.

This is by no means a complete profile, but a lot of relevant and pertinent information is included such that someone with an understanding of autism spectrum disorder can begin to see and formulate some ideas on how I might be best served in terms of treatment, quality of life, future planning, and so on.

The objective here isn’t to have a form with fill-in-the-blank answers, but rather to have a document or documents that help flesh out the individual nature of my (or anyone else’s) autistic profile to better understand what may or may not work in providing assistance and treatment.

While I’m not going to go into a lot of detail about my thoughts on “functioning” vs “independence,” with the latter being a better description of individual autistic needs in relation to therapy and in being as independent as possible, I will say that the reason PDA is important is that once the PDA profile is included, the seemingly obvious realms of managing autism become less clear. Why? The answer is that any demand, perceived or real, made on an individual with a PDA profile will be met with one or all of three responses: fight, flight, or freeze.

In this context, not too long ago, I witnessed an interaction between Camper and Commander. I had asked Camper to make Commander some food. Camper proceeded to tease Commander and then proceeded to prepare the food. When Camper returned to where Commander was playing and began to tease some more, inserting chaos into an otherwise chaos-free environment (I will write more on this in the future), Commander punched Camper and then took off running before he dove under a table and curled up in a ball and froze.

The interaction between Camper and Commander is one that illustrates, a little too well, the role PDA can and does play in normal, day-to-day, interactions.

Notice what happened: a demand was placed on Commander in the form of teasing and pushback on the kind of food being prepared. In response, Commander felt he needed to respond, and because Camper was the object of the chaos, Camper was punched. Commander, probably realizing that hitting is bad and having hit Camper was really bad, took off running or fleeing to avoid the next demands: a cooldown period and being encouraged to apologize to Camper; finally, when I re-entered the events and went to find Commander, he was under the dining room table refusing to speak to me, acknowledging what had happened, and referring to himself negatively.

All of these things, from inserting chaos (yes, this really is a thing) to not hitting and depending on the severity of an action having a timeout to having a breather to having consequences up to and including losing device access and screen access, are things we’ve worked on most of his life.

There need to be safe spaces to make mistakes and a willingness to reschedule and plan around the tougher patches in Commander’s life, but that’s part of the plan to help him grow and develop into an individual with as few dependencies as possible, or to state it another way: we want Ollie to be as independent and successful as possible given his autism diagnosis, his intelligence, and his other abilities.

For Commander, like me, the autistic profile is an important tool for my family, other caregivers, therapists, and teachers, and for educational purposes to best serve Commander’s needs. Of which, recognizing Pathological Demand Avoidance is one important part. Especially as he and I begin a homeschooling (or according to where we live: a home education) journey.

As with most subjects, I will come back to this with more specifically about PDA, expanding personal autism profiles, and finding the right people and resources to help people with autism get better treatment, succeed in therapy, and to understand their own needs.

The role PDA plays in life, mine or Commander or anyone else, can be used as part of a personal profile. This profile will help in determining next steps. In the case of Commander, including PDA has led to research into educational and therapeutic practices that will better enable him to adjust to the real world demands as he gets older.

Going forward, I hope to proactively begin using this information to help Commander adjust to new schedules, accept unexpected or sudden changes in our day, and to allow him more room to develop and grow. Through this, I believe Commander’s experience, as well as my own, will lead to a more successful and better understood interaction with the NT world.  

For instance, I once learned about a condition called aphantasia, where individuals can’t visualize images in their minds. This doesn’t hinder creativity or success. It simply means that when asked to visualize something, they see nothing.

When I discovered I had this, it offered another reason for feeling different. For instance, when Erin or Camper or Commander aren’t present, I can’t easily recall their appearances or details about them. I know Erin has hazel-green eyes. I’ve seen them, but can’t describe in detail their shape, size, or placement. However, I recognize them instantly when I see them.

Interestingly, while some people say actors like Jodi Foster and Helen Hunt look alike, especially early in their careers, I see clear differences between them. Even if I can’t visualize them, I spot the inherent distinctions between them, and their voices are distinct.

This unique observational ability, where I perceive details in real-time but can’t visualize them later, seems to sharpen my sense of distinctiveness.

Discovering you have aphantasia can be unsettling. When I close my eyes to imagine, I see a vast blackness. Imagine not being able to visualize a beloved face or place when you close your eyes and try.

I’m not alone. In an informal survey of those identifying with autism spectrum disorder, 50% could visualize, while the remainder couldn’t or were uncertain. Though not definitive, this indicates a link between autism and aphantasia.

Aphantasia has been acknowledged since the late 1800s. Although minimal research connects it directly to autism, I believe the inability to visualize should be further studied in relation to autism profiles.

Since Commander, too, is autistic, I aim to understand aphantasia better. As a stay-at-home parent, my goal is to offer him greater opportunities than I had, making understanding this phenomenon crucial.

However, seeing Commander engage in imaginative play, creating original My Singing Monsters characters or new creatures from Roblox games, alleviates my concerns about his potential aphantasia.

In my personal exploration, I’ve found that while I can’t visualize, I can discern differences in similar images. I’ve downloaded colorful, abstract images to use in my studies, hoping they’ll anchor abstract ideas in my mind for easier recall.

This idea isn’t baseless and has been applied to learning challenges by changing reading material backgrounds. Though I can’t cite specific sources now, I’ll seek supporting evidence as I continue my research.

For those with aphantasia or those with it as part of their autism profile, knowing its name is empowering. With this knowledge, we can adapt and thrive.

There’s this quote in the autism community that has gained some traction over the years:

When you’ve met one person with autism, you’ve met one person with autism.

— Dr. Stephen Shore

This isn’t an incorrect statement, though I’d argue that by removing the qualifier, autism, the more inclusive and better quote is:

If you’ve met one person, you’ve met one person.

Which isn’t exactly an improvement as the intent, I believe, is to indicate that not everyone with autism is alike and no one represents the entire umbrella that is autism spectrum disorder.

Nor, for that matter, does any one person represent the totality of humanity or the possibility of what humanity can become.

When it comes to autism, the first thing I’ve begun to talk about is the complex nature of the disorder. There are three diagnostic levels, Level 1 is the most independent, Level 3 is the most dependent. Most people who are diagnosed on the autism spectrum exist somewhere in the Level 2 range of needs and dependencies.

Autism, as a disorder, is almost never light or sort of autistic. That’s not the nature of autism and because people on the spectrum are different and unique, autism often becomes invisible, especially to those who either haven’t been exposed to it or who don’t pay attention to some pretty significant differences.

One aspect of autism’s complexity is found in the number of comorbid conditions that exist when autism is present. These include:

• ADHD

• Depression

• Anxiety

• Irritable Bowel Syndrome

• and so on

The list gets fairly long pretty quickly and when combined with the umbrella of autism spectrum disorder, suggests that anyone who is autistic is dealing with a lot of additional problems and stressors just be being alive and existing in a neurotypical world. The world isn’t designed for people with sensory issues that make lights and sounds and the presence of others, physical contact both wanted and unwanted, as often insurmountable obstacles to life.

I’ve come to recognize some aspects of life that making not only my autism more understandable, but also help in identifying the specific nature of Commander’s autism and how best to approach the difficulties he has in everyday life.

For example, there are autism profiles, which are the variety of and degree of difficulty with aspects of autism. One of these, mostly recognized in England, is Pathological Demand Avoidance or PDA. From the readings available, both online and in print, this is an anxiety related aspect of autism that results in someone with PDA reacting to any demand placed on them, regardless of the seriousness of incidental nature of the demand. The PDA profile suggests that demands are met with a Fight, Flight, or Freeze response causing an automatic “No,” from people, physically lashing out or running away, or simply shutting down.

Understanding this about myself and about Commander has led to changes in how I approach conversations, preparing for transitions, and making requests. Instead of barking an order in a firm voice, I’ve found suggestions, wondering, vocally thinking about things, and other non-demanding forms of communication to work most effectively.

Unfortunately, knowing this now does nothing for the many times at work or among family and friends where demands were met with clearly negative response and it doesn’t change the nature of people pushing my buttons until I got mad in order to get me to say anything to them. Fight. Flight. Freeze.

Being autistic means there is a deficit in theory of mind. Many people refer to this as empathy, or the ability of someone to try and put themselves into someone else’s shoes. Within this context, there are those who claim to be autistic with high empathy, which is a direct contradiction to the criteria used in determining an autism diagnosis.

Since I needed to understand this as part of my own journey, and after a lot of reading, I’ve adopted a description of empathy in two parts:

1. The ability, without assistance, to recognize an emotionally significant situation or event; and,

2. The ability, also without assistance, to respond appropriately.

What I’ve found in communicating the “one person with autism” individuals is that many who claim high empathy tend to describe highly reactive anxiety to the changes in people and events around them and not an actual recognition of what’s going on. Rather than being emotionally observant, people with autism are environmentally reactive.

Which has been the case with me in the past. At some point since being diagnosed, though, I’ve turned off the part of me that is observant toward emotionally significant events or situations. Instead, I allow myself to be in the environment without being part of the environment – unless I’m forced to be aware of what’s happening around me. This isn’t to say I’m not aware of what’s going on around me, but that I’m not actively looking for what the people around me are attempting to convey in nonverbal language and subtext.

As with a majority of people with autism, I deal with ADHD. I also deal with depression and anxiety. I have IBS, though that’s under control and has been for years. I deal with some significant fallout to being touched by anyone not Erin or Camper or Commander and often dance around people to avoid the physical contact.

I’m also almost totally face blind and have recently come across something called aphantasia, which is a way of saying I don’t easily form mental images, if at all, and when I know something I simply know it. Directions, details of places, pictures, TV and movies, I don’t see these things, nor do I form images of what I’m supposed to see when it comes to stories or whatever I simply have to feel my way through it in my head and the answer just appears.

I can’t speak for everyone with autism, nor do I want to, but I can say that having autism is a part of one’s life. For some it’s really hard, for everyone it’s a completely different way of interacting with the world. People don’t come down with autism, they’re born that way. And when we start to interact with the world, it’s often a deliberate and intentional act. What causes it to be deliberate or intentional depends on the individual, but you can be sure that meeting someone with or without autism is meeting a single individual and that individual with or without autism is complex. Autism merely adds a myriad of complexities. And it’s that myriad of complexities I ultimately want to understand and to help other people understand.

My journey with autism began in 2010, after an incident at a wedding reception that would now be characterized as a classic autistic meltdown. This episode not only embarrassed Erin but also prompted me to seek assistance—spanning both medication and talk therapy.

Interestingly, it was Erin, then pursuing her Masters in Education, who suggested I explore Asperger’s Syndrome. Like many, I hadn’t previously associated the symptoms of Asperger’s or Autism Spectrum Disorder with my own experiences, despite always feeling that I perceived life differently than most.

In my quest to understand autism, I delved into books and sought out others on similar journeys. One particular blog post about a woman’s struggles with physical intimacy resonated with me. While our experiences weren’t identical, the emotions were eerily familiar. That post was a turning point in my quest for understanding.

Now, over a decade later, I’m poised to assist others in understanding their autism, shedding light on diverse experiences, evolving therapeutic approaches, and striving for a holistic understanding of autistic individuals.

Theory of mind is often thought of as empathy and empathy doesn’t have an official diagnostic criteria in psychology2. I believe empathy can be clarified by defining it in two parts:

One, without assistance to be able to identify an emotionally significant situation

Two, without assistance, to appropriately respond to an emotionally significant situation3

That’s it. That’s how we understand the basis for autism and it bears repeating:

Autism is an inability to identify or respond appropriately to emotional situations without assistance.

Why?

There are a lot of reasons and working through the many books on ASD has led to some insights. For example, there are up to twenty-five percent fewer long nerves in the ASD brain4.

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The comparison I make for these long nerves is a large city with highways and surface streets. On ramps and parking. There are buildings and structure where the activity within the mind begins and ends and where signals from and to the rest of the body communicate. It’s a busy and complicated place with a lot going on.

In a normal or neurotypical (NT5) brain, everything flows like it’s supposed to and I’d imagine that watching traffic flows in an active fMRI6 would prove to be similar and similarly informative to watching traffic patterns in a large metropolitan area. In an ASD brain, the traffic flow is by nature of fewer long neurons more congested and less efficient. The difference in speed may only be measured in milliseconds, but that slowing is the difference between being able to see and identify emotions and completely missing emotional cues.

As I’ve considered some of what this means, there is an idea that as with any situation where traffic congestion happens, flow will be improved by removing some of what causes the traffic and parking it somewhere. For the mind, this can be parking appropriate emotional awareness and allowing more immediate and important processes through. Which means, for ASD, the lack of emotional awareness in real time is an aspect of how the neurodivergence adapts to the differences in neurology7.

I believe it may be impossible to properly comprehend how milliseconds can be the difference between emotional awareness and engagement and complete lack of awareness. It may also be true that most of the time milliseconds don’t matter8. If we use sports, the Olympics, as a starting point in trying to visualize the millisecond difference, the Wall Street Journal has an article that illustrates that faster-than-a-blinking-eye moment though it may be just as easy to find movie that uses Bullet Time9 and watch that intentional slowdown and camera movement to understand this concept.

Watch any football or baseball game where a referee or umpire makes an unpopular or even a bad call and this is an issue of blinking eyes and processing the visual input10. Science, today, has attempted to identify when we become aware of the actions we’re taking and some studies suggest that we often make choices before we’re even aware of the need to decide11.

Whether or not we can identify when thought happens, or even an inherent recognition of the origin of action, emotion, or anything else is less important within the overarching ASD conversation than how long it takes for a signal to both travel and be processed. By allowing for the possibility that all other factors are equal between ASD and NT, or that the process between ASD and NT begins in exactly the same way, the principal difference will then exist as an aspect of time-in-transit. Rather than how signals move through the brain, what I’m suggesting is time is an essential factor in how those signals are processed, in what order, and with what priority.

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The mind processes information in as efficient ways as possible and it’s likely the evolutionary development from lizard brain to high reasoning and emotional functioning allows for a delay in emotional input and response over more important neurological data. It’s equally possible that fewer long neurons in the brain require some signals to have less priority over others. How the neurological processes of the mind determine importance may be a question of evolution. Regardless, emotions end up as both low and high priority data points within the brain with personal emotions a higher priority than external emotions. Milliseconds in this context begin to help inform, if not also explain, some of the core functionality of people with ASD.

As an adult with ASD, I find the idea of emotional processing as unimportant most of the time. When it is important, I am unprepared for the task and then I’m stuck in the process of trying to remain as calm as possible in a heightened emotional situation I may not be able to properly identify. What is also true is that I will be more aware of the conversations, details, and outcomes a few hours or days later and more capable of connecting emotions back to the events that caused them12.

One of the tricks to ASD and emotion is a limited emotional vocabulary and a delayed personal emotional awareness. What I’m saying here is generally that people with ASD don’t have a broad understanding of or description for emotions. They also need to process what’s happening before an emotion or emotions can be applied to any given event. The awareness and processing of emotions isn’t immediate, it’s not natural, and it can be delayed for significant periods of time.

As an adult, an emotionally significant event that happens today could take hours, days, or much longer to work through. By creating a delay in event and recognition of emotions and finally processing of emotions creates a situation where the event and the emotion aren’t connected. What this means is that being angry and recognizing that I was angry and then understanding why I was angry removes the emotion of anger from the event where I was angry or the conditions that led to me being angry. This is going to be true of any emotion and situation.

As a parent of an ASD child, I’ve found it important to identify what precedes a meltdown and what to do when one occurs. It is possible to get ahead of a meltdown, but what is more important is recognizing the emotional or sensory overload leading to overload and shutting down.

The word for the conditions and signs preceding a meltdown is rumbling. This is when an individual, in my case a young child, is beginning to indicate things aren’t right and may begin flapping, running around, he may be more erratic, or he could begin to act tired or sick. Rumblings are followed by the emotional incident, which is what people often refer to as the meltdown. However, this could also be the individual shutting down or showing an emotional response that is outsized or even inappropriate for the situation. Finally, there is a period of recovery where the individual is more capable of understanding something happened, but not necessarily ready to deal with what preceded the meltdown or even their actions during the meltdown.

Once my ASD child has moved into a meltdown, there is no getting through to him until he is in the recovery stage and even then what is needed is comfort and reassurance. My objective for my ASD child is safety. I don’t want him hitting his head against walls, throwing things, flailing, or doing anything else that might end up in self-injury or hurting someone else. At the point of meltdown, this is riding out a storm, making sure the individual with ASD is safe, and waiting until they’re calm and rested. That is if the meltdown wasn’t stopped at the rumbling stage13.

My experience both as an adult with ASD and as a parent, an educator, and as someone who has been investigating ASD since 2010 to believe these same conditions and qualities aren’t also true for adults with ASD. I believe there should be a greater degree of control for adults, but even if that’s true the levels of control are directly related to how independent14 the individual with ASD is in life.

We expect adults to be adults and therefore we expect them to be in control. Yet, ASD doesn’t discriminate against age, sex, orientation, or anything else and assuming age creates protections against exhaustion and emotions is naive15. The adult expectation is what ASD is an invisible disorder as those who have ASD learn to mask16 and act as expected, most of the time, rather than giving in to what it means to be ASD all of the time.

Early ASD work has shown that children with ASD communicate through movement, which has led me to suggest that movement is communication17. We often see this as flapping or stimming and yet when we look further into what’s behind the movement of both children and adults, what we find is meaning that might otherwise go unnoticed. Happiness, sadness, excitement, anxiety, anticipation, dread or any of countless other examples are displayed through individual body movements and often identified as flapping or repetitive movement.

What I’ve taken from movement is communication is both the necessity in watching what’s happening and also realizing that the mind and body are far more complexly connected than we realize. Instinct may have an outsized role in how emotions are expressed before they’re realized. Meaning our bodies may know what is happening before our brains have an opportunity to catch up18. As a parent one of my roles is watching my ASD child’s movement. Movement may include having my son take swings at me or running headlong into a wall for no obvious reason. Movement results in a broader and more inclusive view of how he is experiencing the world and is commentary on his perception of place within it. Understanding that movement is communication should be an integral part of the school settings, among caregivers, and as training for police officers and police departments as well as social workers. Rather than ignoring m ovement, it is an essential method of communicating19.

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ASD doesn’t exist as only an inability to see or process emotional input. Though I believe this to be a first step in understanding what it means to be ASD. My approach is to make something very complex approachable before diving into a level of complexity that includes other known disorders that are comorbid20 to ASD.

• Marriage

• Children

• College degree

• Published author

• International travel

Absolutely none of these ended up happening by the time I turned twenty-five and to make things worse, I was on the verge of being a menace to society1 and therefore an even bigger failure in the eyes of the Mormon community.

I turned twenty-five in 1999 and twenty-six in 2000 and beginning in 1998, my sense of accomplishment and self-worth had gone from I-don’t-know-what to non-existent and it was only going to get worse. As with my birth, there’s nothing particularly special or important about any of the years I spent in Utah. Outside of being just another face in crowds of tens of thousands of single Mormon adults, there’s nothing outstanding about that period of my life.

For a time I tried to go to school.

I got a job as an assistant database administrator was fired when one of the two owners decided to verbally lay into someone over a misunderstanding. That particularly employer felt entitled to yell at and belittle everyone2.

What I didn’t know when I turned twenty-five or twenty-six was how to set reasonable goals that included the element of time. Setting goals is easy. Look at what you want. Figure out what is needed to make it happen. Start working toward the objective.

One goal, getting married, is simple. It’s the execution that is hard. First, date. Second, meeting someone you want to marry. Third, propose. Fourth, get married.

Nowhere do those steps require reading books on dating or relationships. The goal itself doesn’t outline or focus on what it means to date or how to propose. The resources that might help when identifying when there is a sufficient enough connection between two people where a long-term relationship is warranted are lacking. In the Mormon culture, marriage is often an intentional precursor to having sex, which suggests the decision to get married in Mormonism is questionable as one objective is sex. There are a lot of questions that need to be explored in the dating and marriage process that are glossed over or ignored3.

When I thought as a teenager that I could be successful by age twenty-five, it made sense. I wanted to write and therefore if I wrote enough I’d become successful. This also meant I needed to submit my writing and if I did that enough I’d be published. What people don’t tell you is that rejection precedes success and rejection has different effects on different people. I got to the point where I decided my writing needed more attention and submitting my writing could wait4.

Outside of success in writing, my other goals were externally influenced:

• I was told I wanted to be married and have children and it made sense for a RM5 to be married and have started a family by twenty-five.

• I was told that I needed to have a college degree and a career.

• I was told I needed to be active as a Mormon.

• I was told if I did everything I was told, even if I didn’t succeed, I’d at least come to understand what God wanted.

At no point did anyone bother to tell me what was actually involved in accomplishing any of these goals. I had to figure that out on my own. Which meant finding book and trying to understand other people’s interpretation of the questions I needed to ask. A lot of these books are self-help, which doesn’t meant unreliable but aren’t always useful.

Of all my goals, the goal my parents wanted me to drop was writing. My mother told me, once, that writing needed to be like pottery for my older brother. Writing should be something I could enjoy in my free time, but not something I did to pay the bills or as a living. My father told me that I wasn’t good enough and probably wouldn’t be for a long time. He supported this, on multiple occasions, by telling me I was really bad at communicating.

Writing is one of the most significant ways I define myself. Writing is life6. Whether or not I’m writing toward publication or for work or to help someone, I’m still always writing7.

By the time I was twenty-five, I’d come to realize that not every single goal I had needed to be accomplished in the timeframes I’d originally planned. For example, when I decided to stop taking night classes it wasn’t because I did poorly academically. I was a straight A student. Instead, I stopped taking classes because I could see that I wasn’t as dedicated to school at that time in my life as I was to working and buying books to read.

I’d literally asked myself:

What is the best use of my time?

A better use of my time was paying bills and rent and trying to pay down some debt I’d acquired. Having a full-time job made more sense than trying to work part-time and go to school for as many credits as I could afford to take.

It took me some time, but eventually working full-time, not going to school, and bouncing between jobs, being laid off or fired, and trying to understand my place in the world, I’d figured out basic priorities:

• Food

• Shelter

• Clothes.

Instead of goals like writing or dating, providing for a family or a career, what I’d come to understand were the basic priorities that needed my attention. For many, these may seem like they are common sense and instinctual, but for me that wasn’t the case. I didn’t have a natural connection between necessities in life and the things I wanted.

Goals are things that are wanted and are not necessarily things that are needed.

What was also true about my goals, other than I didn’t possess the functional understanding to accomplish them was the lack of personal readiness to start.

Take dating. Before I graduated from high school I went on two dates with two different girls. The first one I knew from church and we went to see the movie Groundhog Day and then ate at Wendy’s. The second date I went on was with someone I met working at McDonalds and I took her to a church dance.

I went to church activities. I danced with all the girls. I spent time with friends, some of whom were female. I did all of the things I was supposed to do, based on my limited understanding, and didn’t pair off with anyone. Then I went on a mission (another goal I was told I had) and when I came home I went on some dates with one of the two young women my mother specifically asked me not to date. When it was clear to me she wanted more out of the relationship than I did, I stopped seeing her.

When I moved from Texas to Utah and lived with my grandparents Taylor, one of my objectives was not to bring anyone to their house. This included friends or girls I might be spending time with. Eventually, after a few months looking for work and living with my grandparents, grandma asked, “Do you like boys?”

No, grandma, I don’t like boys.

Grandma’ problem, my maternal aunt’s problem, was that I didn’t bring people around. There was no visible evidence of me dating. No one met the people I was associating with outside of my younger brother. Which meant, in their Mormon thinking, that I had a problem and clearly my problem was my sexuality.

There were two primary reasons that I didn’t date.

First I didn’t want to marry someone related to me8.

Second, I didn’t feel like I was mentally or emotionally ready to date.

For me, not dating wasn’t about being attracted to someone. The noise in my head suggested there was a significant level of uncertainty about dating and relationships, asking girls out and trying to understand them, and my intellectual and emotional time was better served in other pursuits. All of this were things I knew about myself and things I was open to talking about had anyone bothered to pay me enough attention to ask.

I know my parents were aware of my differences in 2001 when I convinced them to go to church with me while living in South Salt Lake City. One of the speakers during Sacrament Meeting9 was male, single, and my age. My mother turned to me and said, “I wonder what’s wrong with him?”

Up until that moment, I’d never wondered what my parents thought about me. There were the periodic check-ins and my father sitting me down to account for my spending and time, but this was different. I turned to my mother and said, “What do you mean?”

She said, “He’s attractive and not married, what’s wrong with him?”

I said, “If that’s true, what’s wrong with me?”

My mother said, “Nothing is wrong with you. You’re special.”

I said, “Why am I special and nothing is wrong with me and he isn’t special and something is wrong with him?”

My mother avoided answering the question as my parents suddenly had to leave. The conversation got to be personal and intimate and instead of making an observation or asking questions or even thinking I might be worth an answer, she changed the subject and left.

As I’ve stated before, my mother doesn’t produce defective children. Yet, in 2001, eleven years before I’d be diagnosed with ASD, she both admitted to me being defective and then avoided talking about or admitting to what she’d done. For my parents, admitting to a verbal faux pas was too much.

By establishing a hard-and-fast rule on when young men should be married and whether or not my parents or the Mormon community understood what they were doing there existed an enormous amount of pressure to be someone I wasn’t. For Mormons the term applied to unmarried young men is:

Menace to society.

My goal of not being married and turning twenty-five and then twenty-six and older was that I was broken and a disappointment. I’d failed at what many may consider one of the simplest requirements to being Mormon: marriage, because I was actively failing at dating and having normal relationships.

If I wasn’t dating or married, then I had another option to be successful, another goal I could‘ve worked on and succeeded at: Career.

By the time I’d turned twenty-six I’d moved to Dallas, Texas for work. I’d been working in technical support for an anti-virus company and had worked my way up a couple of ladders so that I was in a higher level of support. The company had offices in different parts of the United States and I was considering, after living in Dallas, applying for work with a different team in Seattle, Washington. In my mind, if I wasn’t writing professionally I could work on being better at what I was doing.

One problem with ASD and work is often found in upward mobility, which was one of the bigger problems I dealt with as an employee for different companies. I’d be hired and promoted and then I’d hit a wall or ceiling and I’d be stuck and unable to advance or move. I took the job in Dallas because the subcontractor I’d been working for in Utah had told me I wouldn’t be advancing in the company anymore. Rather than be trapped and because the parent company had been asking me to come work for then, I took the job and left. When I was in Dallas, part of my job was writing and editing knowledge base articles, which was fine. I also had a coworker who literally couldn’t sit near anyone else and, for some reason, would do what I said. Eventually, I got tired of waiting for an opportunity to move within the company and took another job.

This job wasn’t in support, it was as an installation manager for specialized networks in high end business class and resort hotels. My job was to make sure everything was installed, configured, and troubleshot before having the hotel sign off on the work. Ideally, I’d be on an airplane on Monday morning to start the install and back home Friday evening.

Since the company was a start-up, I worked for a series of start-ups back in the late 90s and early 2000s, we often had a lot of different responsibilities. As an installation manager, I not only managed people, but I was responsible for the quality and speed of the sign off. There were standards that needed to be met, some of which were the percentage of rooms that were online when we finished the install, and I took all of this seriously.

Part of my job as an installation manager was taking new employees and subcontractors and teaching them how to do different parts of the work. To do this, I’d started keeping notes and writing things down so there was a process whereby people would be taught and shown how to do the work. When I got stuck in a hotel in Atlanta, Georgia for six months troubleshooting an install I’d not been the assigned manager on and had taken over because the assigned manager had more time with the company than me, understanding the system was almost a hobby for me. It was enough of a hobby that I quickly understood the problem wasn’t the install. It wasn’t the punch downs (we piggybacked on the phone lines). It wasn’t the servers. The problem that kept that hotel from being finished was the hardware we were installing.

All of the evidence at hand supported my conclusion and when I’d share that with my manager and his bosses I was told I was wrong. The system, theoretically, would work and if there was a problem it was me not the specialized hardware. What I didn’t know at the time was that this problem had existed in a lot of other hotels. Rather than try to troubleshoot and fix it, the other installation managers went into the servers and deleted rooms to make the hotel look like it was one-hundred percent online, because it was.

The problem I refused to back down on wasn’t that the rooms weren’t connected, it was that the servers couldn’t see individual rooms over a certain number. Remove some of the rooms the server is supposed to be monitoring and the system looked like it was working fine. Until it wasn’t.

During that install I was worried every day that I was going to be told to pack up my bags and come home. I was fired. I got to the point where I actively expected to be fired and I found out later that I was on the chopping block10. Rather than having a series of successful installs, I had a hotel that couldn’t be signed off. This was costing the company and the hotel money every day I was there. I was an outlier giving the conmpany a black eye.

Eventually, and quietly, they brought me back to Salt Lake City and sent someone else to update the firmware on the in-room devices. It turned out the problem was the hardware after-all, but admitting that wasn’t an option. If they pulled me from the hotel and sent someone a little more senior, then everything looked good for the company. I was the problem and as far as that hotel was concerned, the problem had been taken care of.

After Atlanta, once the firmware issue was fixed, I was more faster and more efficient than everyone else when it came to installing the system in hotels. I didn’t just understand it, when I did my first walkthrough I could identify problems and fix them before we needed to install hardware into small rooms or piggyback on bad the telephone lines. Instead of leaving on a Monday and praying for a Friday return, I was home by Wednesday signed off on the install and monitoring things from my apartment.

Eventually, this led me to changing jobs and becoming a technical writer where I could take all of the work I’d been doing in hotels and create the documents and training materials that were used by the company. Because we were still a relatively small startup, that also meant the CEO would pull me into projects and if there was a need for a letter or something other project that didn’t fit cleanly into someone’s job description, I was the one who would do the work. Instead of being worried about being fired or laid off, I found myself in a position where I was safe. I also found myself becoming stagnant and bored and in need of something else.

I’d gotten to the point of being a writer, but I wasn’t happy and it wasn’t what I wanted. Had I found a career? Maybe. I’d certainly found a job I could do and people liked me in that position. What I was having problems with was imagining myself in that position for the next twenty or thirty or forty years. I couldn’t. When the company stared laying people off, I volunteered.

After that, I’d do a stint at a Novell spin-off before my contract with the company was cancelled. My manager wanted other writers and refused to give me work. When I was escorted out of the building, I told his manager what had happened. Neither of those men survived Novell reabsorbing the company. I’ve worked as a contract technical writer, copywriter, and as a general writer over the years, but as a career technical writing isn’t for me.

I learned that some goals need a lot more defining. It was never enough to say I wanted to write and then work toward that end. Nor was it enough to say I wanted to work in IT or technical support and hope that I could make things work. However, by becoming a technical writer or working in IT and technical support I learned that while I may be good at both, I have a limited tolerance level for both.

I learned that my writing goal, my career goal, my goals in general weren’t broad goals that could be fulfilled by simply finding something close. I had specific goals.

I didn’t want to work for a tech company and write documentation. I wanted to write books about things that interested me. I wanted to write fiction.

What I learned was that my idea of a career wasn’t finding a forty-year employer. Some job where I’d work Monday through Friday, nine-to-five, and hope the company was in any way as loyal to me as I was to them. I also happened to be an adult at a time when the ideas of staying at one company for an entire career was becoming passé, retirement plans were being outsourced to 401Ks, and pensions were quickly disappearing from the company ledger.

By the time my mother was questioning what was wrong with other people for not being married and avoiding talking about what made me different, I was already beginning to realize that the goals I’d been working toward weren’t realistic. Not because they were bad goals, but because those goals didn’t mirror who I was or what I wanted to accomplish in life. Not knowing about ASD at an earlier age and adapting and adjusting for that reality meant I was constantly behind everyone else and struggling to keep up. Hating myself for not dating, not being married, and not having something I‘d refer to as a career or even a long-term job.

I was simply existing and I could see this affecting my parents. I could see them reacting to how my life was progressing. I knew they were working in the background and I knew my father was trying to move my life forward for me11.

Simply existing came to a head in 2003 when my father, because of my older sister, decided to tell me exactly how I was screwing up my life, I was twenty-nine.

There was a sequence of events that preceded this conversation. I’d gotten a job for a small wanna-be MLM in Sandy, Utah and realized I didn’t care for the work. Thinking I had another job, I quit. The other job didn’t happen and I was out of work and couldn’t pay rent.

My parent’s asked my older sister to let me live in her basement. She agreed. My father called to tell me he would be at my apartment the next day to move me from where I was living to my sister’s house. It took me a couple of hours, but I told him not to come. I’d created the problem and I would figure out how to fix it. In a rare moment of listening to me, my father agreed not to drive six hours one way and stayed home.

I found a roommate, but then lost the roommate because he was convinced not to leave a bad marriage. I was offered help on paying rent, but my landlord’s decided they would let me out of my agreement so they could rent to someone else. I was ready to put everything I had in the back of my Jeep and figure it out, but was once again offered a place to stay in my sister’s basement. This time I took it and moved everything I owned to her house.

When I moved into her house, the clutch went out on the Jeep and while I know how to drive without using the clutch pedal, I had to park facing out and I couldn’t come to complete stops at lights or stop signs. My older sister offered to loan me the money to pay for the parts I needed to fix my Jeep and I accepted. Around this same time, I was offered a temporary job fixing data transmission issues between a local trucking company and their customers and now had a job.

The trucking company had an open plan office and I found the amount of noise from the people I worked around and the drivers who came to check in with their dispatchers, and in general was a bit too much and got a ride with my older sister to a store where I could buy headphones that covered my ears. The headphones cost about thirty dollars, though my older sister felt like I’d spent a lot more on them instead of paying her back.

Eventually, my sister decided I was making significantly more money than I was and decided that I was intentionally cheating her and asked that I pay rent. Which I agreed to do. However, paying her rent also meant I couldn’t immediately pay her back what I owed. I was also attending the Mormon Singles Ward near my sister and trying to be more social and started dating someone.

As with my grandparents, I never felt the need or desire to introduce the people I associated with to my sister or her family, or my parents, or my other siblings, which meant that I was spending unknown time outside of her house. It didn’t matter that I was an adult and almost thirty. My older sister had other ideas, none of which included listening when I tried to talk to her about life, dating, my job, or other things. Nor was she particular interested in treating me like an adult.

Eventually, my girlfriend had a bad day and wanted to talk. I told her to come over to my sister’s house and we could talk. My sister came out and met my girlfriend and in less than five minutes decided this was the girl I was going to marry. To quote my older sister, “I know love and John is in love12.”

Eventually my parents announced a trip from Colorado to Utah for a family wedding, some cousin was getting married. During the trip my father told me he wanted to talk to me about something, but first Church. I have no idea how long the wedding and events lasted, but I do know that my parent’s got back around midnight, which is when my father decided to lay into me about exactly how I was screwing up my life.

According to my father, I was screwing up in the following areas:

• Marriage

• Family

• Education

• Career

• Living situation

I know that there had rarely been a point leading up to this interaction where I’d been completely closed off about my goals and choice. Yet, this was the climax of my interactions with my parents. It became clear that they didn’t listen to me nor did my older sister. In both cases, I may have been speaking, but no one was listening.

More important, my father had a single objective: to evict me from my sister’s house. He gave me two weeks. If I wasn’t out in two weeks he’d show up with his truck and move me out.

I spent a lot of time trying to figure out why this conversation at this time?

Then I understood. My sister had decided on who she wanted me to marry. She’d seen love and in that moment she’d made a series of decision for me. When I broke up with my girlfriend, my older sister saw this as some kind of betrayal and instead of asking what happened or telling me what she wanted or needed from me, she went running to mommy and daddy. My older sister wanted me punished and didn’t want to be the bad guy.

By the end of what is now the last time I will ever allow my father to speak to me like that, I was angry and seeing red. I planned to get into my Jeep and drive until either the Jeep broke down or I ran out of money or I hit the Atlantic ocean. When I pulled out of the driveway, I realized I was too tired to simply take off and decided to get some sleep. When I woke up, I had a new plan. Which was to move out of my sisters house, pay her back everything she was owed, and by July 2004 move out of Utah to places east.

What about goals?

My goals didn’t change nor were they necessarily wrong. I’m married and have children. I have bachelors and masters in fine arts degrees. I’m still dedicated to writing and once I earned my Masters of Fine Arts in Creative Writing my parents, who could finally come to ceremony in celebration of something I’d accomplished, were less resistant to my goals about writing.

I’m still not published and I don’t have a career, per se. but I do have a family and I have been to school and I continue to study and work on my writing. My life is radically different today than it was when my being an adult and trying to get from being labeled a menace to society to someone who wasn’t an embarrassment, but it doesn’t reflect what my parents or the community they belong might approve.

None of which makes me sad. As I’ve said, I’m estranged from my parents and other members of the family. This took no effort on my part. Literally. The moment I stopped trying was the moment they stopped having contact with me.

Yet, I discovered a goal that I wasn’t aware of in trying to accomplish the goals I had and the goals I was told I should have. I found answers to why I could see and feel I was different from the people around me, my parents and siblings, the members of the Mormon communities I was part of. Had I been focused on this first, things might’ve been different. Or had my parents been willing to accept the possibility that, based on my mother’s mantra, I was defective then things could’ve been better.

Instead, I did got married and had children and when I realized that my behavior was a problem that could become too big in my relationship with my wife, I found the motivation to figure out what was wrong and how to begin fixing me. Having ASD isn’t curable nor is it something I can change. What I can do is figure out how to live in a world of people who either can’t understand me or won’t do the work necessary to understand ASD and move forward.

Today, my goals are still to write. I still want to travel internationally. I still want to publish. In some ways, I’m still looking for a career and am happy to be a stay-at-home parent to a four-year-old with ASD. I’m also still learning how to plan better, add an appropriate element of time to goals, and working with my wife on how we move forward.

This is the story I’m trying to tell. The story of figuring out what it means to be ASD. The story of how to live life. The story of how to be an adult when being grownup isn’t as defined as maybe we’d like it to be. I’m looking for answers to help explain my past, but also to help my ASD son’s life moving forward. Hopefully, I’ll also help other people in the process.

I was born in 1974 in Denver, Colorado. The weather was cold2. I’m told my father had to keep a fire going under the oil pan3. Soon after I was born I was taken from my parents and put into ICU. I don’t know why I was in the ICU, what I’ve been told was that my heart was either beating too fast or too slow4. In either case, I wasn’t put into a nursery. My mother didn’t have a well-baby bed sitting next to hers. Neither of my parents could hold court and show me off. I was born and I was unrealized.

For my mother, this became a faith crisis, which is a way of saying she began to pray that God would save my life5. I’m absolutely certain my mother began to bargain with God. For the religiously inclined, or those who’ve had enough religious experience, bargaining with God is akin to Hannah promising to give Samuel to God if God would let him live6. I don’t know how to process either a faith crisis or bargaining with God since God, by the definition I was raised with, is all-powerful and all-knowing. What my mother wanted was immaterial since God already knew was going to happen.

Eventually, my mother stopped praying for me to be healed and instead prayed:

Thy will be done

… and from that moment forward I think I stopped being her kid and became something else7.

My father, understanding that I was probably going to die and I hope in service to what he believed was necessary for God and religion asked their Mormon Bishop to help give me a name and a blessing. I can say this because I know my parents, my father, enough to know that “best medical advice” would’ve been important. Thinking about what this represents, I now believe both of my parents had given up on me because both of my parents thought I was going to die.

Religiously speaking, at least before I died, what my father did was essential because I would be added to God’s list of people. While not baptism, which for Mormon’s doesn’t happen until at least eight-years-of-age, this was clearly the next best thing. It was, for pre-grieving parents, a salve on their pain. Whether or not they recognize this, they were preparing for the next steps in life.

What I’ve spent a lot of time thinking about and I’ve come to understand is my mother’s “Thy will be done,” was her acknowledgment of my pending death. It was a form of religious permission accept her pioneer heritage8.

Then I didn’t die and my parents got to take me home. I have no experience with this kind of change and have no stories or shared experiences from my parents to be able to guess how me getting better changed them. Maybe they were happy. I hope they were. What I wonder about is if it changed them enough or if preparing for me to die meant something else.

During our time in Denver, the next two of my siblings were born. Four, a boy, and Five, a girl. When we moved to Virginia Six, a brother, was born. This was followed by a move to California where Seven, also a boy, was born. Then Texas and ten years and three months after I was born and put into the ICU, my youngest brother, Eight, was born.

I don’t have a lot of memories about growing up in Virginia or California and most of my clear and firm memories begin around the time Eight was born. Before that, my mother would occasionally talk about Colorado and the playhouse or fort my father built in the backyard or as though I should remember it9. Or there’d be mentions of Sterling, Virginia and the things we did there. What I’ve found to be true is some memories are strong and clear and everything else exists in a world where I have to find proof I existed on my own.

There are events I remember. For example, Six climbed onto the stove and turned it on and his legs were severely burned. I don’t remember him climbing onto the stove, nor do I remember the ambulance. I don’t remember my One putting out the burning pajamas, or that my parents had been out of the house. I do remember being told about the hospital visits. I remember Six being washed and the burns abraded. I remember the time spent helping Six recuperate.

Four and I shared a bedroom in Virginia, which was the beginning of our arguments over who got to sleep in what bed. The room was on the second floor at the top of the stairs and had a window that looked out over a cement patio where my father stored his ladders. One night, I remember having trouble sleeping and looking out the window only to see someone pale and white and scary staring back at me10. I remember waking up on Christmas Eve and hearing noises and looking out over the living room from the top of the stairs and seeing my parents putting Christmas together. My four-year-old brain understood who Santa Claus was and Christmas stopped being magical. It was about pretending to believe so I got presents.

Virginia was probably where, based on my mother’s stories, I followed my older brother to school, pushing my matchbox cars. My mother didn’t know I was missing with three other children that needed to be taken care of. A neighbor found me and brought me home. Virginia was where we had strawberry’s growing next to the back door and where we would find turtles eating the strawberries. This was, based on stories, where my father stopped a neighbor kid from hitting his sister11. As an adult, the neighbor girl eventually found my parents to thank them.

Our house in California was in Mission Viejo in Orange County. We lived on a road that ended in a cul-de-sac. Our house was on the outside of a ninety-degree turn about halfway down. At the top of the main road was a park and the bottom was opposite a new development where construction vehicles were parked. The equipment operators never locked the cabs or took the keys out of the machines.

My father built a pergola over the back patio while we lived there. My older brother had rabbit hutches in the backyard along one of the fences. All of the boys, four of us at the time, shared a room, with Four and me on one side and One and Six on the other side. One literally drew a line to delineate his side of the room from our side of the room. We weren’t allowed to cross his line. Eventually, when Seven was moved out of my parents room, Four and I shared our side with him.

There are many things I remember from California, riding my bike along trails and falling off and getting hurt and then picking myself up and heading on my way. Or walking or riding to school, which meant going out to the main road and heading down the hill, turning left at the bottom and following the road to the intersection. Crossing a busy highway and then walking with packs of kids along a walking trail until we got to school. I remember climbing all over construction vehicles. Defacing new playground toys. Deciding it was easier to get home by climbing the side of the hill opposite the school, only to learn that climbing in dirt wasn’t easier than walking around the long way.

My problem is I don’t remember people. I don’t remember what it was actually like to be in that house, or in Virginia. I don’t remember the experience of California and as a result I struggle with the memories I do have. They are disconnected from everything else while the memories that are connected are associated with pain.

My first memory of Texas was being semi-awake in a gas station across from the McDonald’s near the high school with my father trying to figure out where we were going. We’d spend some time in a motel near the mall, but on that day, my first day in Temple, Texas, I was hot and uncomfortable and aware that things were different. The motel we were staying in was across an open field from the mall and when I’d get bored sitting in a cramped motel room with too many people, I’d walk across the field. One of my first Texas experiences was coming across a diamondback rattlesnake slithering across the trail I was making.

I’m sure a lot of this is benign memories and information. It’s uninteresting. There’s little in the way of historical facts or a record that matters. Except, each of these places has details and in some cases I’ve been able to verify the details. I’ve been back to the house in Virginia when I was working in Washington, D.C. and while I didn’t stop or knock on the door, I was able to see that I what I remembered about the house and the area was accurate. I think, if I could, I’d return to the house in California just to see how accurate my memory of that area is, but forty years is a long time and a lot has changed12.

I graduated high school in 1993 and three months later I went on a Mormon mission. When I got home from my mission, I decided the best medicine for the worst two years of my life13 was to get away from everyone and I got a job driving long haul semis across the country. Six months later, I realized my mistake and quit and went to work in a bookstore and then for a local internet service provider where I did tech support and built and fixed computers. Eventually, I moved to Utah to try going to school and I realized I wasn’t taking school seriously so I changed my focus to having a job and paying bills.

Regardless of my stated objectives, I was always focused on writing and reading and throughout my life I’ve bought books to read and digest. Regardless of location, the one constant in my life are stacks of books or shelves covered in books in the rooms where I lived. As I got older the books changed and the content matured, but the stacks remained. Even today, my bedroom and office, the living areas and in storage are lots of books. It’s part of who I am.

Eventually, I moved to New Hampshire and started going to school again then transferred to BYU14 where I met Erin. We got married and a year later we had our first child15. A few months later I graduated with a Bachelor of Arts in English and my little family moved from Utah to Massachusetts. When the process of finding a well-paying job seemed impossible16, I went on to get a Masters of Fine Arts in Creative Writing and Erin earned a Masters in Education.

What is true about my story before Erin and before Massachusetts is the complete lack of mention of autism or any developmental disorder. There are no mentions of anxiety or depression or ADHD or anything else, all aspects of ASD I deal with and have dealt with for my entire life.

When we lived in Virginia, my mother was asked to bring Four and me to a special education preschool so the children there had normal children17 to emulate. I question whether or not my mother was asked to come because the children needed other children to mirror or if she was asked to bring me and Four because I was different and someone wanted to try to help. In the late 1970s and early 1980s, being special was a bad thing18 and today I believe my parents actively rejected the possibility that I was different19.

As a parent, my older son was included in a preschool where he was a NT child as part of a class that had ASD children and children with other disorders. He was one of the NT role models in the class. This was intentional on our part. We wanted him to have this kind of exposure to other children of all ability levels. If for no other reason than to help him build and understand an area of empathy many NT children seem to lack.

There are a lot of points in my life where I’m certain my parents should’ve been proactive about and identified the differences that were my behavior and life. I know they noticed them because I was raised to understand that the rules that applied to my older brother and sister were not the rules that were used with me and the rules for my younger siblings were also different20. My takeaway has been that I’m different and should therefore be treated differently.

What little I have been told about my life before any reliable memories exist was that I didn’t move a lot in utero. I was a big baby and I’d kick once a day to let my mother know I was alive. When I didn’t kick for a couple of days, she’d rush to the hospital to make sure I was still alive. I’ve also been told that anger and yelling, people being too emotional would cause me to shut down and to withdraw.

My parents knew there was something different about me and I spent a lot of my life believing because I was different I was being punished for the actions of my older brother and sister. I had to be better and I had to toe-the-line and do everything I was told because someone else screwed up and broke the rules. My older brother and sister were normal children and teenagers. They snuck out. They came home late. Rather than acknowledging maybe I was both different and willing to follow the rules, I was told that my parents wouldn’t bail me out of jail when I was arrested.

My older brother and sister were both violent toward me and when I pushed back or said something I was the one who was punished. They didn’t want a younger sibling sent on dates with them as a chaperone or a younger sibling period21. There were no safe places for me.

When I became an adult and started moving around, there would be periodic check-ins with my father on my spending habits, the nature of what I was doing, where I lived, how I went about conducting myself. It was almost as though the only way my parents could deal with me was to reduce our interactions to premeditated and mechanical operations from which I could be judged. Different interactions meant a different parent. Open disapproval was always my father. Open questioning of benign actions or activities was always my mother.

If I wasn’t being judged, I was being attacked for talking about things that interested me, telling my parents or siblings about what I’d recently learned, or questioned on the veracity and legitimacy of what I was saying. There were often concerted attacks on my source material. I’d gotten so used to this kind of competitive interaction, an expectation that I deserved to be attacked, that I was surprised and upset when Erin pointed out how I was treated22.

There were times when it got to be too much23.

A lot of this, for me, tracks back to thoughts of being a newborn and what it must’ve been like for my parents. At what point did they decide I was too much effort?

Because I’ve had a child who spent his first week of life in NICU, I also know there are parents, mothers and fathers, who have to return to their lives, their work, the outside world because the baby is going to be in the NICU for an indeterminate amount of time. There isn’t an immediate plan to take the child home and the best the parents can do is to get done with work and go to the hospital for a couple hours before going home and sleeping and doing it all over again the next day.

Fortunately, Cy spent one week in the NICU24.

For my parents, especially my father, staying with me was never an option in 1974. Not only did the hospital not let my parents see me while I was in the ICU, I have two older siblings who were small and needed to be taken care of. I don’t know if one of my grandmothers showed up to help or not. Maybe. That information has never been shared with me. Even if that had been the case, I know both of my grandmother’s would’ve had dates by which they would be done, no exceptions.

I don’t know what research existed at the time about the need for infants and physical contact and the mortality rates of infants in the ICU who weren’t held25. Was I held and by who? Was there more to my care than scheduled feeding and changing my diaper? What was the medical wisdom in 1973 and 1974?

Answering these questions are avenues to follow. They informs parts of who I am. The answers also don’t matter. I know who didn’t hold me and I know why they didn’t hold me. They weren’t allowed26.

Today, we know that physical contact with infants is important and essential for their development. Having physical contact, being held, is important and not being held leads to a higher mortality rate among infants and children. Which leads back to the early signs of being autistic. I wasn’t the most demanding or naturally affectionate child. Does my early ICU experience explain this or was it because of autism?

I was born in Denver, Colorado and after I was born, there were complications and I was moved into the ICU1. My mother doesn’t remember whether my heart was beating too fast or too slow, just that there was a problem. In either case, no one knew whether or not I would survive and instead of having a brand new baby they could hold and love, take home and show off, they had the idea of a child which resulted in someone they could see or hold or share with others. Borrowing from the thought experiment Schrödinger’s Cat2, I was both alive and dead until something changed.

I was born into the covenant in the Mormon church. Because of my mother’s religious beliefs she started to pray when she realized something was wrong. Her prayers were for me to be healed, to get better. She wanted to bring home her baby. When that didn’t work and something shifted inside of her, she changed her prayers to God’s will to be done. She was prepared for me to die and this change became a faith affirming experience.

My mother found the spiritual fortitude to accept I was going to die. For her, accepting that I was going to die was an answer to her Schrödinger’s Cat prayer problem.

I don’t know how long I was in the hospital or how long my mother spent praying for me to get better or what changed when she decided to give up on my ever going home. What I’ve come to accept is that the answers to these questions don’t exist and if they did the answers would be unreliable. The hospital records don’t exist anymore. I can’t interview the doctors or nurses. The people who would’ve been in my parents life back then don’t exist for me now. What’s worse is I’ve come to find Mormon’s as unreliable and willing to tell white lies or revised truths in service of helping people feel better.

What I do know is how long it takes to grow a baby from insemination to delivery and my younger brother is thirteen months, eighteen days younger than me. A month earlier and we would’v been Irish Twins3. Instead, we were referred to as the Bobbsey Twins4. I hated being called a twin.

I was raised in what I refer to as an Orthodox Mormon household. The preferred name for the church itself and members is the Church of Jesus Christ of Latter-day Saints. I am officially no longer a member, nor are my wife and children. No longer being part of Mormonism is a good thing.

My wife and I intentionally left all religion about ten years ago. There are times I look back at that period. Until recently, I was worried about publicly stating I’m exMormon or that Mormonism in all its colors is a well documented, full blown lie. I was raised to believe those who left Mormonism were anti-Mormon. I am5.

What has become clear in recent years is that I have fundamentally different ideas about the world than my parents do. We both see and approach the world from different points-of-view. These differences begin with my birth and life and extends into almost everything I’ve ever done, every decision I’ve ever made, and the way my parents and siblings have chosen to interact with me6. Today, I believe my parents did give up on me as a baby and when they thought I wasn’t going to survive they replaced me. I also know my childhood is lost in the life and experiences of my younger brother. These are two areas where healing and finding common ground are nearly impossible.

The defense of my parents, though, isn’t found in our differences. I can’t change them and I’m not going to try. My parents are from a different generation from me and are from different generations to each other. One was born at the end of the Great Depression. The other was born at the end of Word War II. They precede the Boomers and they have very different ideas about how children should be raised.

My father was raised by a man who was either left with his babysitter as a young child or was an illegitimate child of the woman who raised him7. My grandfather, who died in 1958, raised my father in the way he knew, which meant hitting. When my father got in trouble he was hit. When I got into trouble I was hit, which was exactly what I knew to expect whenever I knowingly did something my parents would disaprove of.

Which leads into one of the questions about adults who are seeking diagnosis for autism:

Were you abused as a child?

The objective of the question isn’t to pass judgement on parents, but rather to determine whether or not abuse led to characteristics that are similar to people who are autistic. I’ve found the question doesn’t matter as the outcome is always someone who has trouble connecting with the world around them. The difference is found in what kind of therapy and treatment exists for the abused child as opposed to the autistic child, now adult.

Being diagnosed with autism wasn’t possible for me as a child. I believe my parents were anti-therapy, anti-mental health, and anti-help. They raised me to be stubbornly independent, insofar as that’s even possible. At the same time, they raised me to be very dependent because I was different and special.

What is true is how I was raised and the lack of help meant that I did consider suicide on more than one occasion. Once in front of my parents while my father was lecturing about something I’d done and how it was bad and I'd be lucky to stay out of prison. He stopped lecturing and started telling me how God had told him what I was thinking. My father was trained in criminology and law enforcement, it’s what he did. God said nothing, instead his instincts told him my attitude had changed and I was actively planning something else.

Rather than let me go to bed or do what I was planning, he continued to talk and talk and talk. When I finally left my parents room and went to bed, it was to fall asleep. I was too tired to act. The thing neither of my parents ever bothered about, as far as I could tell, was to make sure those thoughts never returned or to seek out real help for what I was going through. Seeking help would’ve been a sign of weakness and a betrayal to one of my mother’s beliefs.

What they didn’t know8 was this wasn’t my first go-round with suicidal thoughts nor would it be my last. All they did was keep me awake long enough that I most likely wouldn't act. Which is how I stayed alive that night.

I know without any doubt that neither of my parents know nor understand me. They've never asked questions. The information they serve up as evidence is often observational or second and third hand. There isn't an ounce of willingness left in them to put in any effort to listen to me. There may have been a period where they were willing to try, but if true those attempts are as lost to time as my childhood is lost in someone else's life9.

My parents may or may not need religion. I can’t know that, but what I do know is they allow it to inform a disproportionally high level of their lives and the negative aspects of Mormonism were allowed to dictate how I lived. I now know a strict, religious upbringing isn’t good for anyone10. Mine was filled with lies and manipulation, an expectation to give everything I had at an organization that doesn't care about people as people. I was left in the care of leaders who actively looked for ways to harm me or who ignored the harm that was caused by others.

I was born in 1974 a year after Roe v. Wade was decided. When I was born, my parents made a choice to have me. They chose to get pregnant. They chose to keep me. They chose to bring me home from the hospital. They chose to raise me.

I share this not because it’s in any way a criticism against being born or people having children. It is, however, an observation on who makes what choices. My parents made choices that had nothing to do with me even though those same choices resulted in me being born. They are also responsible for the choices that left me wondering who I am and what was I like as a child.

My parents are from generations where children were considered extensions of their parents. The name I was given at birth is a family name and I was taught that I needed to live up to the honor of the man who possessed it before me. Children were born into emotional and financial obligation. Mormonism furthers this obligation by teaching each child born picked their parents. Which means, as a Mormon, I chose the obligation I was born into whether I remembered it or not.

In September 1993 I went on a Mormon mission to San Jose, California. Less than a year later, while I was living in Prunedale, California, the DSM-IV was released. This is the Diagnostic and Statistical Manual of Mental Disorders. Prior to this release, someone who was diagnosed with autism would’ve been considered too disabled to expect to ever live on their own.

Eventually, the DSM IV-TR was released and with it HFA11 and Asperger's Syndrome12, which is where I would've been disagnosed under different circumstances. However, as a child and since after World War II, in the United States, a diagnosis of autism was considered a worse case scenario with no execptation for the child, or adult, to have or express emotions, communicate effectiveley, or take care of themselves.

What people knew about autism, and still believe to be true about autism, was that it was bad. Really bad. In 2001, as autism diagnoses were on the rise in Silicon Valley (San Jose, California and surrounding cities) Steve Silberman wrote an article for Wired titled The Geek Syndrome13. The article presented autism in a negative light and as a pandemic that was on the rise. Years later, Steve Silberman would write a follow-up book titled Neurotribes: The Legacy of Autism and the Future of Neurodiversity14 that acts as a longer form correction of the misapprehensions from his Wired article.

People look at autism as a bad thing and my parents aren’t exceptions. They are, as is true of all distribution patterns, the rule. For them an admission of autism or any mental disorder was bad. If one of their children had autism, that would be bad for them socially. My parents had a social life and children, while important to them for reasons, were also the objects of other people’s judgements. Mormonism with all its preaching of acceptance is very judgmental and those, like me, who fall outside what is considered normal aren’t accepted or embraced15.

Going backward into my mother’s upbringing and relationships, her mother and sisters and sisters-in-law, was how a mother who had autistic children were viewed by the public and professionally. The phrase is: refrigerator mother. They were supposed to have been cold during pregnancy and distant at birth. The child had come out damaged because the mother was, somehow, damaged.

Which meant my mother’s mantra: I do not produce defective children, is an important road sign in my attempt to understand how I was raised and why so much of who I am could be ignored or beaten out of me.

The reason my mother’s mantra has meaning was an aspect of her upbringing and generation. A defective child was a child with some birth defect or disorder. Like autism. A defective child is an autistic child and I was both defective and autistic. My mother, and therefore my father, couldn’t identify me defective because it meant she was a bad mother. She’d failed.

Having me meant my mother had somehow failed and failure wasn’t an option.

How we define success and failure is always subjective. For Mormon mother’s its having children and raising them to remain Mormon. For Mormon father’s its providing for families and being priesthood holders. For Mormon children it’s growing up within the faith and remaining faithful and active. There’s more: marriage, family, education, and career. The biggest concern Mormon’s have is being successful enough to stand out and if the parents aren’t as successful as they think they should be, the success transfers to their children who then need to have children, and a spouse, and careers, and education or training.

My parents are the standard for Mormons. They are just like all of the parents from their generation. My mother wanted to measure her success through having six sons all of whom were all Eagle Scouts and Returned Missionaries, married in a Mormon temple and successful16. By being autistic and leaving Mormonism, I've become a disapointment to my parents.

I have a lot of reasons why I won’t talk to my parents about any of this. I know they lack the ability to talk about it. My mother once told me to stop trying to talk to my grandma about a sensitive subject because “She’s too old and it’s been too long.” It had been two weeks. I want to believe my mother was looking out for grandma, but really she was shutting down having to hear about grandma being a bad person.

By encouraging me to drop something uncomfortable, my mother, both of my parents, set the groundwork for our relationship today.

I don’t get to change my parents and by extension they don’t get to change me. Nor am I concerned about making changes. Estrangement was easy. All I had to do was stop trying.

What I can do moving forward is to look for answers and questions, in that order. I can continue to look for my past and I can try to understand. My parents are the villains in my story and while that may not seem fair or reasonable, too bad. They are also my parents and as every adult comes to discover, a part of me will always want to have a different relationship while recognizing I’m done trying.

By way of introduction, I’m an adult who was diagnosed with autism and in the more than ten years since, I continue to look for answers. Especially when those answers can and do help my son who is also autistic. I’m here to share my autism and my world with you.

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