The freedom to live life on your own terms

My youngest son, Garrett, turned 21 yesterday. Were it not for COVID-19, I’d have taken him out last night for a drink. We were both looking forward to it.

Garrett has what they used to call Asperger’s syndrome. I’ve danced around naming it for years in stories like this one and this one, but have always shied away because it’s more his story to tell than it is mine. But I’m taking the risk today because I have a story to tell about him and me and my dad, and how there may be a common thread that runs through all of our lives.

Garrett is a junior in college and he’s on track to graduate. He seems happy. I think he has a great chance at launching into a successful adulthood, on his own terms.

That wasn’t always true. Starting in about middle school he seriously struggled with communication, organization, and school deadlines. He broke some school rules, and ended up in trouble — if the rule didn’t make logical sense to him, he would follow it only if it were convenient to do so. He was once suspended for repeatedly walking down an up staircase. (That rule did make no logical sense.) If a class didn’t interest him or if he felt the teacher was unkind, he couldn’t bring himself to participate or do the homework. He didn’t have any friends, and I think he was desperately lonely. He was easily overwhelmed. He felt a lot of stress.

I worried endlessly over Garrett. At first, my approach to him was not helpful and may have been counterproductive. I rode him hard on getting organized and getting things done. I was scared to death that he would not succeed through school. I succeeded in school, my brother succeeded in school, my other son Damion succeeded in school. I had no script for a kid who didn’t. I had no idea what to do. I needed this kid to be all right.

You all know I was divorced after a disastrous and destructive marriage. There was no co-parenting with Garrett’s mom. At her best, she simply wouldn’t engage; at her worst, she was deeply unpleasant. So I turned to my parents for support and advice. I talked to them a lot about Garrett and how best to help him.

Dad had an almost supernatural understanding of this kid. He seemed to get Garrett at the deepest levels.

Garrett and Dad

That doesn’t mean that Dad always knew what I should do for Garrett. His advice was sometimes obviously and painfully wrong. Dad believed that if you just were able to reason with people, say the right thing, get them to see the light, that their behavior would suddenly change for the better.

I know better, because he tried to raise me that way. I endured hours of him trying to convince me of his view. I hated it. I wanted our relationship to be characterized more by happy shared experiences. But moreover, I deeply wanted to figure out my life for myself. I could listen to Dad’s perspective and advice as long as it was okay to adopt what made sense to me and leave what didn’t. I did adopt some of his way, the part that made sense to me. I did leave the rest — and that was hard for Dad to accept.

But when I talked to Dad about Garrett he was always able to help me find a calm place. His advice sometimes helped.

When I called, Dad always answered the phone. “Hey Dad, it’s Jimbo,” I’d always say. He always replied, “Jimbo! Let me get your mom.” But if I needed to talk about Garrett, I’d say, “wait, no, I need to talk to just you.”

It was obvious that this pleased Dad. Dad really, really, really wanted to be a source of wisdom and advice to his two sons. When it came to Garrett, he could be. I’d talk to him about what I was experiencing, and Dad had an uncanny way of giving a rationale, an explanation, or a perspective that fit.

I called Dad over and over and over.

And then one day after Garrett had started high school, I wrung my hands to Dad over Garrett one more time. One last time. Because then Dad said something that probably changed Garrett’s life: “Son, you can’t save them all.”

It hit me like a brick. I had been trying to save Garrett through helping him find success in life as I defined it. My dad tried to do that to me and I hated it, resisted it hard, even occasionally rebelled against it. I was determined to find my own way. I was smart, and I was capable, and even though in many ways I was like my dad, in many key ways I was not like him. His way would not be a perfect pattern for my life. I needed to find my own pattern.

So did Garrett. I finally saw it.

I immediately radically changed my relationship with my son. It had largely been characterized by me riding his ass about getting his homework done, about staying organized, about achieving.

I put all of that away. I didn’t know what else to do, so I just enjoyed my time with my son. I made my home and our time together into a quiet and safe space. No matter what was going on in his life, he could come to my house and find peace and, if he wanted it, connection.

I backed off and let him fail or succeed on his own merits.

Garrett and I began to connect on a level we had not before. He started letting me in through sharing his interests. We built a lot of Lego sets alongside each other. We played Minecraft (on computers in separate rooms) and he taught me how to build all sorts of things in that virtual world. He introduced me to Rick and Morty and other strange and funny cartoons.

As he became a junior in high school he suddenly started earning decent grades. He had been a C-D student, but out of the blue was a solid B student.

We talked about it. “You really seem to be getting it at school now. Do you know what changed in you?”

“Two words,” he said. “Stereotype threat.”

I didn’t know what that was, so I asked. “Well, we learned about it my psychology class. Basically, it means that I was seen as the screwup in the family and so I naturally tended to meet those expectations. But then Damion went off to college at the beginning of the year and it changed things around the house. I don’t know how to describe it. But I realized somehow that I could be what I wanted to be. I wanted to be someone who did well in high school.”

I knew just what he meant about Damion leaving. He had been the family’s dominant personality, and we didn’t see it until he was gone. If nobody else was talking, Damion was happy to. We did things together that were Damion’s idea or aligned to his interests. Damion’s absence gave Garrett room to be himself and to express himself.

Me getting off Garrett’s back and Damion going away to college gave Garrett the space to figure himself out.

It was a triumph for Garrett, and Dad played an important role. I wonder if Dad was also not neurotypical, and that’s why he understood Garrett so well. I’m no diagnostician, but I do see some patterns in Dad’s behavior that align. He was undiagnosed, of course. During Dad’s World War II childhood, Hans Asperger had only recently written the first papers describing the condition that would later bear his name. Asperger’s work was largely ignored until the 1980s. Even then, for a decade or more after that, autism was seldom diagnosed unless it was profound.

For that matter, I see some neurodivergent patterns in my thinking and behavior, too. I’ve written before about what a geek I was growing up, how poor my social skills were. I have some mild sensory issues — noise can be problematic for me, and I cut tags out of my shirts because they can feel like needles poking into my skin. I was even a precocious reader, figuring out words largely on my own as early as age 3. I’ve read that’s sometimes a marker for high-functioning autism.

To make it as an adult I’ve had to learn a lot of skills to fit in and get by. I started with social skills. I realized at about age 25 that I was missing out on experiences I wanted to have because I was so reticent. It was too hard to say hello to people I passed in the hallway at work, so I looked at my shoes everywhere I walked. But I wanted those new experiences, and so I worked to connect with others. I started with just saying hello to my co-workers. Later I added their name if I knew it. From there, I identified other behaviors I wanted to learn. I studied people and started to recognize social patterns. I practiced sets of responses to those patterns so I could participate with them. Now that I’m in my early 50s I pass for someone with good social skills. But even now there are still moments when I can’t recognize what’s going on socially and don’t know what to do.

I have built good executive function — that is, I handle the day-to-day stuff of life with flexibility and self-control. Many neurodivergent people struggle with this. But I learned as a teenager how important it is for me to have strong routines. They keep me from forgetting important things and let me feel in control in my life. If I abandon even one of them for more than a couple days I feel considerable stress and run out of energy long before the day is over.

One of my current routines is to spend an hour or more each morning writing and processing photos. It somehow sets my mind right for the day. If I skip it for more than a day or two, I start to come unraveled. I also have built several strong habits and follow a number of strict rules to keep myself organized. For example, my car keys are either in my pocket, on top of my dresser, or in the car’s ignition — period, or I will lose them. And thank God for Google Calendar, which reminds me when to pay the mortgage and when to change the furnace filter. It takes a lot of work to keep all of this up, but it’s far easier than the life chaos that follows when I don’t.

I’ve also had to learn how to cope with overwhelm. Too much input still blows me away. In my early 20s a good therapist taught me how to identify and label my emotions. Sometimes just knowing I’m overwhelmed is enough for me to get a handle on myself. In my late 30s another therapist helped me learn to soothe myself and tolerate distress. I also taught myself to meditate, which lets me use my breath to find calm.

All of this may or may not make me neurodivergent. I’ve thought about seeking a diagnosis, but I’m not sure it would let me access any therapies or treatments that would help me more. I am who I am, I’m reasonably happy, and I’m reasonably successful in the way I define success.

Was my dad? I don’t know. I fear not, especially late in his life. But Garrett looks to be on track for it. I’m grateful. He has his own journey ahead to figure out his life. If his journey is anything like mine, it will be a grand adventure.

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35 responses to “The freedom to live life on your own terms”

  1. J P Avatar

    This was a really uplifting read. It is a wonderful thing to make it through the challenges of middle school and high school and to transition into having a good relationship with a kid. And that’s true even without the complications of some kind of diagnosable condition.

    1. Jim Grey Avatar

      Thank you, my friend. Man, what a challenging ride my parenthood was, with the bad marriage and the divorce and its aftermath. It challenged me to my core to be a good dad through it all.

  2. fishyfisharcade Avatar

    This is a striking post Jim, in that I feel our situations are very similar.

    One of my sons has a dignosis of ASD. While there were indications of this, it wasn’t until he received a formal diagnosis from a specialist that it all suddenly became clear. All the signs had been there all along: the stimming; the communication difficulties; the issues around and lack of interest in social interaction – it was just that we were ignorant as to their meaning up until that point.

    He is high functioning, and this can sometimes mean that others are unaware that there is anything out of the ordinary. ASD at this level is a largely invisible, so it’s very easy for people to mistake social difficulties with rudeness, or unexpected acts such as outbursts of frustration when in ovewhelming (for him) situations as bad behaviour. While we, as his family, understand and adapt to this, sometimes others are quick to judgment due to their lack of awareness.

    Like yourself, I am also fairly certain that I have non-neurotypical attributes too. Upon learning of our son’s condition I took the time to dicover more about it and found that may of the attributes of ASD matched the way I behaved and felt about situations, and cast a light on the way I’ve handled various events throughout my life. Without any formal diagnosis I wouldn’t go as far as to say that I am autistic, but I feel I’m certainly further along the spectrum than most. I feel a lot of empathy with my son as, on many levels, I understand and share the feelings he has when faced with situations he finds difficult.

    1. Jim Grey Avatar

      I resisted my son’s diagnosis for a few years. He was also diagnosed ADHD and I believed that was the real issue. It wasn’t until he hit those teen years and things got really hard for him that I started to believe the ASD diagnosis.

      The way our brains are wired simply must run through families. That children can be diagnosed ASD today is a good thing overall I think, if for no other reason that it allows us to look at ourselves through that lens and see if maybe we share some of those traits. Perhaps then we can unlock new ways of approaching our lives that lets us be more effective and experience less distress.

      1. fishyfisharcade Avatar

        I’ve read hat there may be a genetic element involved that means it can be passed to children from their parents. I’m not sure that I know of any of my forbears having ASD traits, but sometimes they can be disguised. People with higher functioning autism can become quite adept at adapting their behaviour to fit the norms. Given the lack of understanding in the past, it’s terrible to think that many people from older generations who had ASD would have been written off as bad, rude, or even stupid due to the ignorance of the condition.

        I’m glad to hear that your son is doing well, and I’m sure you’ll get to share that drink before too long.

  3. Khürt Williams Avatar

    It’s good to know you Jim. Thank you for sharing and connecting.

    1. Jim Grey Avatar

      My pleasure Khürt!

  4. Malerie Yolen-Cohen Avatar

    Loved this. I have an M.A. in Psych, but didn’t pursue a career in that field. (I became a stock-broker, which was much more cut and dry!). But while studying, I observed that if we dig deep enough, EVERYONE can be labeled. Everyone has some characteristic or another that can be pathologized. Even normal human attributes, like shyness or gregariousness, can be seen as a disorder. My two sons were flagged as ADHD (in absentia), but I refused to drug them. Like you, I did try to micro-manage them, and it wasn’t until my husband and I backed off that they started to flourish. I wanted them to be comfortable in their own skin and be creative (which drugs seemed to squelch). Like you, and your son, with help, they figured out ways to organize their lives and school work by the time they graduated HS. They both went to the same engineering college. One double-majored in Civil Engineering and Architecture and is now married and a Construction Manager in Chicago. The other is a software engineer in NYC. Unless a kid is a danger to himself or others, or is obviously struggling and/or depressed, I feel the less intervention, the better. To just let a kid be him/herself. Great post, Jim. I’m sure it will help other parents who went through what you did.

    1. Jim Grey Avatar

      One of the things about a diagnosis is that it can unlock for you non-drug treatments and interventions. After I finally accepted my son’s ASD diagnosis I did a lot of research that opened up new ways for me of thinking about my son’s behavior and experience. One thing I learned about was a theory that ASD has a sensory disorder at its root; the world is far louder and more abrasive to someone with ASD than someone without. People with ASD have little choice than to defensively turn inward to defend themselves against a noisy, abrasive world. This retards their social growth and their ability to build executive function. Advice for parents, assuming that theory is true, is to create a quiet, safe space for ASD children at home. I did that and it really, really helped my son. It enabled him to leave that defensive mode, at least while he was home with me, and be more himself. So I’m glad for the diagnosis because of the new avenues it opened up for me for creating an environment for my son that helped him be okay!

  5. Victor Villaseñor Avatar
    Victor Villaseñor

    Jim, thanks for sharing this, really touching read.

    Garret, Happy birthday!

    1. Jim Grey Avatar

      You’re welcome, Victor! Always nice to see you pop up in these comments.

  6. Sue Stone Avatar
    Sue Stone

    Im over whelmed with this. our Hayden has ADD his is not very social but he has turned to his scooter and has become very successful in it. We didnt like that it cost $24.00 per session ( he always wanted to go) he cried one day and said this is all I care about only friends he has are those that share his scootering.

    He is a good student yes he struggles especially with math. He loves to talk about events in history and him and I would talk about history that I have lived.

    he is shy and usually doesnt have much to say especially if the family is all together.

    I know of another family member with ASD who also is a success in life although College was not for him.

    Makes me wonder and think about family members in the “older” generation.
    would like to discuss this further with you as some of your points have opened my eyes. please call me sometime to chat. Love you Jim.

    1. Jim Grey Avatar

      Sue, I feel for Hayden, I get that need for that one thing that keeps you connected to the friends you have. Garrett didn’t even have that during his elementary and middle school years. He wanted friends so badly.

      Another ASD trait is having a very deep, specific interest. History might be Hayden’s, if he’s indeed on the spectrum. If I’m on the spectrum, mine are cameras and old roads. Just look at this blog, it’s all about my narrow interests.

      I wonder about the older generation of our family as well. I didn’t know so many of them but I did know Dad.

  7. Marc Beebe Avatar

    Asperger’s isn’t so bad, once you get used to it. Of course everyone’s version is specific to them, so the general guidelines have to be taken with a grain of salt.
    Adolescence is the worst time, simply because it imposes a large number of arbitrary rules on us and your basic Aspie needs an explanation better than “because”.
    Your son has the enviable advantages of knowing what he’s up against and having a supporting father. There’s many that fare worse.

    1. Jim Grey Avatar

      Yep, an explanation better than “because,” as the world needs to make sense. I spend a lot of time trying to make sense of the world. Sometimes I succeed.

  8. PiscesPhotographer Avatar

    Excellent read (as always) and one that definitely resonates. My oldest (17) is on the Spectrum. My wife and I knew nothing about Autism and everything has been a learn as you go scenario. The biggest thing we’ve learned is that our son is going to have to be his own person and love his own life, and while we do what we can to prepare him, we know have to eventually allow him to become his own person. He’s amazed us with his ability to be self sufficient and it has been a blessing to watch him grow and mature into the young man he is today.

    1. Jim Grey Avatar

      When Garrett was diagnosed my only experience with autism was seeing it portrayed on TV, where it was always profound non-verbal. The information available at the time was biased toward training kids on social and organization skills, which was all wrong for Garrett. It frustrated him more and blocked his growth. Backing off and letting him figure it out for himself was the only way.

  9. analogphotobug Avatar

    Wonderful! I met a dear friend at work who has Aspergers. Knowing her has taught me so much not only about her condition, but about life in general. Right now my friend is pursuing a PhD in a techy related subject. And she is married, has been for a while. I am so proud of Her!

    1. Jim Grey Avatar

      That’s awesome! Women with ASD often fly under the radar and miss being diagnosed because they tend to function better in society than men with ASD do, just as a baseline.

  10. JoHawkTheWriter Avatar

    My daughter is on the spectrum, and it took years for us to get her the proper diagnosis. The biggest hurdle was the idea that girls don’t get autism. She suffered through diagnoses of ADHD, Mild Mental Retardation, and Pervasive Developmental Disorder Not Otherwise Specified (NOS), along with other labels she bore so she would be able to access the supportive services she needed in school. She recently moved into her own apartment. She does require some supportive services as she does not drive, but she holds two jobs and does volunteer work. Most people do not realize she has any issues until they have spent some time with her. She is her own person and a happy kid. What more can we wish for our children?

    1. Jim Grey Avatar

      Oh yes. Exactly! You are you, made how you are made, and you will have to figure out your life. It probably won’t look like mine. But as long as you’re reasonably happy and reasonably successful you are good!

  11. Mark Avatar

    I’ve found for me a useful tool. The Bullet Journal. It has become more complicated and now commercial to reach more people but at its core is a simple way to keep track of your disorganized life or a running brain. I always failed at the organizational, priority systems. They were too much. Could not figure where something belonged or was it a #2 or 4? That would completely stop me and nothing got done.
    Read the early very basic rules of Ryder. He’s smart but could never get it together to be successful. With the Bullet Journal you do not have to be ‘organized’ or follow a ‘system’. You number pages of a notebook and have an Index to find the pages. You can throw anything in the notebook and find. Flip the notebook upside down and make another list back to front. Start something like class notes for a project in the middle, find it again and continue. For many, writing down things is much better than a computer/phone system as the act of hand/mind/seeing it locks information in the brain.
    —Don’t get turned off by the pretty Bullet Journal setups or the overly complicated ones that you have to follow a ton of rules.
    Another thing that has helped me is to ALWAYS carry a 3×5” notebook and pencil in pocket. Write down notes for everything. If still needed cutout the note and quickly tape in the Bullet Journal. Don’t recopy. Get it down and move on.
    Page numbers and Index

    1. Jim Grey Avatar

      What an interesting thought! I’ll look into that. I’ve figured out how to organize my life — my OCD, which is an official diagnosis, helps as I like organized things — but if Bullet Journal is better I’ll try it!

      1. Mark Avatar

        I finally found a copy of the original 2013 Video and the brief instructions. Ryder did a TED Talk about but I’ve not seen. -I think this works for those (well, me) who can’t stay on track. I do have spots for phone,keys, glasses, wallet. After that it usually all comes undone. -Should you want links to video and basic instructions (wayback machine for the instructions) let me know. Great article

  12. Read.Count.Craft Avatar

    I really appreciate this post. At 52 yo, finally got this (correct) diagnosis. Self acceptance and addressing the root vs plant. I also share “sensory issues” , but mine is expressed with “OCD-ish” Super Organization, needing to go through specific steps to do anything- which is exhausting. I have been doing things that “make no sense”, slowly freedom opens up. I’m still haunted by “you are book smart but you have no common sense” “you are too sensitive” but fight those ghosts with “and there’s many ways I have overcome and helped others with exactly these strengths”. My son has bipolar with schizophrenic affect and I’m proud to say that while he doesn’t fit into our american definition of successful- he IS. I’m happy for your good news, I’m happy for the healing and peace bridges that appear in your 3 generation blog post story.

    1. Jim Grey Avatar

      I’m officially (mildly) OCD so I get super organization. I live with normal people who don’t organize things well and zOMG is it hard for me, real stress.

      I’m so happy for you that your son is successful on his own terms! We live in a time now of greater acceptance of non-conforming happiness and we are fortunate for it.

  13. DougD Avatar

    Thanks Jim, posts like this are the reason I keep coming back. That really speaks to me, I think I was on some sort of spectrum too. I struggled socially and had a hard time with school. I was lucky to make it through my engineering degree, excelling in courses that interested me and barely scraping by or failing a couple of those that didn’t. And like you in my early 20’s after some life shocks I became a little more self aware and intentionally made some changes.
    My son is like me in some ways, it’s hard to connect with him and during his teens I’d hoped that he wouldn’t have to go through what I did in order to “get it”. Now I’m hoping that he does have those life shocks while he’s still young enough to make a change. Just gotta keep being available and positive…

    1. Jim Grey Avatar

      Yes, all of us who gravitate toward engineering should take a look at ourselves against ASD traits. I bet most of us fall on the spectrum somewhere.

  14. Steve Mitchell Avatar

    Jim that was very honest and profound. I wonder if the problem is less the way we are wired and more the way society, and especially the education system, expect us to be all more or less the same. We are not. I used to know a guy from a very wealthy family in Australia who was profoundly autistic. His job in the family business was being the company pilot, and he was a very good one. Unbelievably quick with mathematics and navigation, which is where trigonometry actually comes in handy. Socially completely inept. But a really decent guy. Probably the only person I ever met who was living to 100% of his abilities!

    1. Jim Grey Avatar

      Yes, I think you may be right there, society expects round pegs and sometimes some of us are actually a little square. How awesome that your friend was able to find his niche and do it well.

  15. Zoran Vaskic Avatar
    Zoran Vaskic

    That was pretty good. Don’t want to take anything away from your photography but between the two I think your greater strength is your writing. As for the story about your son it’s never easy worrying about children. It doesn’t always seem clear what we should do, and no one is usually stepping in to give us a hand. We are alone,so it seems. Good to hear a change occurred

    1. Jim Grey Avatar

      Why thank you! I appreciate that. I wish I could make more time to write real pieces like this.

      Yes, we’re all amateur parents, to be sure.

  16. Shirley Avatar

    I agree with Zoran: you writing is at least as good as your photography. And this piece is pretty insightful. And recognizable.

    I know firsthand how raising a child, observing it’s development can help identify certain (almost) identical behavioral patterns in you as a parent. It certainly helped me grow as a person.

    My son has dyslexia, which he for the most part inherited from my husband’s family. He has ways of handling things that are very different from my own. Trying to help him change to the ways that were right for me, was guaranteed to fail and extremely frustrating for both of us. I had to accept that the ways he used were best for him.

    Like your son, he had so much trouble motivating himself for things taught in school that were mandatory and were so unsuited to the way his brain functions. To this day he functions best of he can focus on things that interest him. This knowledge seems to come to him without much trouble.

    Reading about your son, I am certain that he will find his way in the world. It may be frustrating sometimes, but he knows instinctively how he functions best and will find ways to cope with the demands of this world. And you will be there to help him, when needed (and asked for), because you know firsthand what it’s taken for you to cope with this world.

    1. Jim Grey Avatar

      That’s the challenge of school for everyone who is not naturally suited for it. I wish I could have homeschooled Garrett, but the way our lives went made that not possible. I think he would have felt less different and less on the outside. But he’s an adult now and doing ok. Isn’t that what we all want for our kids as they grow up, to be doing ok?

      1. Shirley Avatar

        Yes, you’re right, that’s all we want. Add happiness, and this mother is a happy one.

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