Struggling to connect-- fatherhood with my Asperger's child. Chapter 2-- a diagnosis that changed my life. My name is John, and I was diagnosed with Asperger's when I was 32. I got diagnosed because someone said to me, you know, your son's autistic, right? They just casually assumed that we must know. So I started diving into everything I could read about autism and Asperger's. I never really paid any attention to it before because my son always acted like me when I was his age.

The process of diagnosis for both my son and myself went relatively smoothly. I think we're pretty lucky in that regard. It still took a while, though. We went to the normal doctor for my son, and then they recommended us to a pediatric specialist, where it took several months to get in. But once we got in to see the specialist, they confirmed the diagnosis of Asperger's for my son, who was three at the time.

In the meantime, I also talked to my doctor, and then they took a long time looking around to find a psychologist that would be a good fit for what I was looking for. So I got lucky because it seemed like they really spent a lot of time looking for a proper one. I've heard a lot of horror stories, but for me, I had a great psychologist. I got diagnosed relatively quickly as well. Both my son and myself got diagnosed within a few months of being aware of Asperger's.

The diagnosis was the inciting incident to change a lot of beliefs I held. I held deeply onto a lot of fear and parented from that fear. When I first had my son, I thought, I'm going to be a good parent. I'm going to do everything the right way. That didn't work out well, and the diagnosis for both my son and me was the impetus that opened the door to realizing how different everyone's life experiences could be, thus allowing more acceptance and awareness into my own life.

It was a huge period of realizing that there were many things I was normalizing. It's amazing to see what you can dismiss if you don't have all the information. All sorts of sensory sensitivities or things I dealt with in the past, I would just assume that, for example, everyone just deals with awful clothing, not knowing that it was my sensitivity to the clothing that was the issue, not badly manufactured clothing. So I wouldn't say anything.

There are a lot of random things like that, where I didn't realize how I would almost torture myself through normalization without realizing it. That opened up the door of realizing that I didn't need to torture myself through normalization anymore, and my son didn't either. Through therapy I became more accepting, more open-minded, and more willing to question certain assumptions that I had held beforehand. Something I struggled with before was that, at my core, I had a lot of opinions and beliefs, but I was too afraid to live that way and express them.

Now it is a lot easier to just say, this is what works for us, and not question what the right way is. That was a major shift that led to a lot of revelations like starting to question things and saying, this isn't normal, or this isn't healthy, or realizing that just because it is normal doesn't mean it is healthy. So a lot of things quickly changed once I started down this path.

I think the reason why I was so willing and able to accept both my diagnosis and my son's diagnosis was because of how I grew up. For other dads, it definitely depends on their own experiences growing up. Although if you grew up autistic or especially if you didn't know, you were very likely to experience many difficulties. Specifically, I found there was a big problem in my life with adults and this obsession with authority as a way of handling things.

Every time that I didn't respond in a way someone expected, most likely I was going to be met with authority, whether that was in school, with the parents, or with whomever. In my childhood, I was either usually facing neglect or loss of control, not really anything in between. The diagnosis was such a worldview change for me. It wasn't just information. It was a big deal for my own acceptance, and it opened this door of just realizing to what extent everyone's experiences can be different.

That made it easier to start being accepting of not just myself but of everything, the combination of the protectiveness I felt over our son, of not wanting him to ever feel really bad like I did growing up, plus getting us diagnosed at the same time was really a powerful combination. It made sense. In essence, getting diagnosed allowed a worldview shift that caused me to have more and less tolerance, more tolerance in terms of ways people did things differently and less tolerance of all the crap in the world that I dealt with as a child that I had previously normalized.

Before we were diagnosed, I basically had zero boundaries because I was just trying to avoid problems all day. I was walking around on eggshells at the time. Or sometimes I was just hoping that I didn't cause someone to get mad at me. I was just trying to constantly avoid that. That became overwhelming because I kept trying to tell myself, oh well, I just won't do that thing next time, which became more and more limiting.

I have to give a lot of credit to my therapist for helping me to start realizing that I was doing the best I could in most situations. My therapist taught me about being nicer to myself. Before, there was this feeling of, if I go easy on myself, I can't get better, so I have to be really hard on myself every time I mess up.

Now I tend to ask myself, did I do the best that I could in that situation realistically? Most of the time the answer is, yes, I did. Then you know what? I'll learn from this, but I'm not going to beat myself up. I did what I could.

That also applied, obviously, to our son. Before the diagnosis, my parenting approach was this supernanny style of authority, and force, and saying, this isn't acceptable. So therefore, I'm going to force the correct way of doing things. He's nine now, so he's been a pretty long time, almost five years.

He's still randomly brings up things from my supernanny years of wanting to control everything about him. He will come up to me and ask, do you remember when you did this to me? You made me stay in one spot, and I was really upset. When he does that, I just apologize.

I don't really excuse it. I just apologize. I'm glad that we are in a place where we're comfortable enough to talk about these things now. Before, it may have been easy to dismiss them and say, well, I'm doing what I have to do as a parent.

I think I was so mad inside about all the times people were clearly trampling over me but I didn't feel like I could do anything because I was being irrational or not keeping the peace, according to my parents. It gave me all the right tools at the right time. I think when you grow up with different experiences than the norm, you kind of get unintentionally gaslit a lot. Even things like saying, this hurts, or, this is bothering me, kids tend to get dismissed in general but especially if it's an experience that people can't relate to.

I used to hear, oh, there's no way that can hurt, or stop being overdramatic. Often, when I was growing up, I saw people do things that didn't line up, so that made me doubt my own reality a bit. So having a therapist was a sanity check. I could say to myself, OK, this person hasn't known me before this. There's no reason for them to lie to me.

Even though there were people in my life who tried to reassure me, it was very easy to dismiss any compliments or positive feedback as, oh, they're just trying to be nice. It was very easy to be programmed to dismiss them or assume that I must be wrong. My therapist was the last piece that fell into place to really give me assurance that I wasn't being unreasonable with myself by setting expectations and holding boundaries.

Much of the stuff in therapy should be stuff that everyone's just taught. It seems like a huge mistake that a lot of these things aren't taught to us as kids. One of the biggest shames to me is that a lot of people treat the idea of needing therapy as an insult. In my opinion, we all need some help. It's difficult to navigate life alone, and we, as humans, aren't designed for that.

The great thing about a good therapist is that it is very patient focused. Oftentimes, you're the one driving the exploration, and the therapist is acting as a guide. Or like I said earlier, for me, it was a sanity check. For a lot of my therapy, I was driving the revelations, and the therapist was just giving me a space where I could safely talk about my thoughts and have someone validate me. If you're by yourself and you're struggling, even if you have helpful thoughts that enable you to hold healthy boundaries and change your perspective, you'll probably won't trust them. You might doubt them, and then you'll start to default to your normal pattern, which generally isn't helpful.

My son's school experience so far-- going back to the story of my son, overall, pre-K went pretty well because we had good communication with teachers. The other major factor was that we had the diagnosis shortly before he started. And as a result, we had the understanding, tools, and ways of communicating his needs going in. It probably could have gone much, much worse if we didn't have that information from the beginning.

We did have a few problems whenever there were student teachers. And that was where I started to realize that some of the ways that the school normally did things just wasn't going to work for us. For instance, we prepped in advance a lot and gave the teacher tons of instruction, for example, laying out ways to help when our son was struggling and approaches for communicating with him more effectively. But we found that when there was a student teacher, they would often not pass on any of that information.

When I asked why, they said that, because of privacy concerns, a lot of parents actually preferred not to pass that info on. People get so worried about people knowing their kids' diagnoses because they don't want people to know there's something wrong. To me, I don't see anything that says a diagnosis means there's something wrong. It's just information to make it easier for everybody. Unfortunately, I think that mindset is baked in.

Pre-K ended, which he loved, and then when kindergarten started, he went to school for a few weeks and then started refusing to go. I think the reason for the sudden school refusal was a combination of things. At the time, we were in New York. This might vary by state, but a pre-K in New York is still relatively open ended. He could dictate a little bit more what was happening, and it was more fun.

Kindergarten feels like it's when they start to ramp up, get serious, and do it with less fun and more structure. So I think that was one factor. Another that we learned in time was that our son was also pretty bored in kindergarten. I remember sitting at kindergarten orientation and realizing that he was not going to do anything new that year. They weren't doing anything that he didn't already know because he really enjoyed math at a young age as well as reading and was already ahead.

There might be situations where they're going over a book, and maybe he jumps ahead or correct the teacher. But then he gets called out for disrupting the class when he's actually just trying to be helpful. I can remember experiencing that myself in school. I wasn't thinking about it as correcting. I was thinking, I'm helping by giving you a right answer here.

That can lead to problems if you correct a teacher. Many of them will take offense to it, like you've somehow soiled their respectability by correcting them. And some parents react that way, too. They see it as almost like a threat, like you've undermined their authority in front of other people.

Another thing that went on was that this was the year that they started the behavior chart, which is one of my least favorite things that's super popular right now. We told the teachers that's not going to be used on him. But of course, he couldn't escape the fact that it's going on around him.

You could tell they were trying to hype up the idea of the behavior chart for us. They would say things like, I worry he might feel disappointed because the other kids are getting stickers for this thing. Once you add that manipulation dynamic in an environment, even if you opt out, he was still surrounded by it. So it does play into things, unfortunately.

Homework in kindergarten was optional, but he got stickers for it. It's one of those things where, in reality, it was optional, but they really wanted him to do it. They were just going to try to make him choose what they thought was the right thing by offering him stickers or some other reward. Since our son wasn't participating in the behavior chart with the stickers and rewards, it was truly optional for him.

Sometimes he wanted to do it because he enjoyed whatever the activity was. And sometimes he just didn't care, and so he didn't do it. And that was fine by us. The fact is that he was really, really miserable in kindergarten. Basically, he was just expected to shut up, be quiet, and sit there. He wasn't engaged in any way.

If you think about it, from his perspective, his thought process was, I can go to school and not talk to anyone. Or I can stay home and at least be part of my family. The part of school he still liked was socializing, and it's always funny because people make comments about homeschooling and lack of socialization. But from my perspective and my son's experience just being in kindergarten, you don't go to school to socialize. You get in trouble for that.

We used to take turns sitting at his lunch, and I always found it really uncomfortable because usually they got a very short period of time. And there were a couple of supervisors yelling at the kids to be quiet and eat faster all the time. Even the one time when they theoretically could talk to their friends, they were rushed along and never given time. It was surprising to see such a huge shift from someone who just absolutely loved school and was so excited about it and then, a few weeks into kindergarten, was just completely done.

At home, he was doing a lot and learning stuff on his own. From his perspective, he was thinking if I can't talk to my friends, and I can't learn anything, and I can't do anything, why would I want to just sit there for six hours? We were moving across the country not too long after that, so it was one of those things where my wife and I agreed we weren't going to make him go. After the move, we decided not to re-enroll him because he was still learning on his own and doing well.

He's now nine, and he's just been home since kindergarten. In fact, if school gets mentioned now, he'll still adamantly respond negatively at the mention of school, so we're taking a very unschooled approach. Some of the ways we're able to make it work is the fact that I'm the only one who needs to work, and I'm able to work from home. So we're both home, which is a huge help.

Also he's pretty self driven. He's getting old enough now where I am starting to think about making sure that we're engaging with other types of topics just to get some variety in. Before he even started school, I had already showed him some animation in Adobe Flash. Since then, he's done his own videos using Adobe Premiere or Scratch. He's always doing creative stuff.

I think people have a hard time envisioning learning without structure in the traditional "I'm going to sit in front of someone and learn" style of learning. I think that there is a place for that. But I think that the idea of that being the only way to learn is fundamentally flawed. Most people's experience of learning is where you sit down in a class and absorb information. Then, when you actually use it, you're not able to remember anything.

Usually you remember it for a task because you have it for something whereas, if I'm programming or I'm doing something myself and I don't know how to do a particular thing, I go and look it up. Then I'm probably going to remember that because I had the context of why I wanted to use it when I did it.

I really don't like how math is taught in school. I always loved math, but in school, you're, taught math in a kind of very paint-by-numbers approach. For example, you're given an equation, but you're not usually giving meaningful context of how you'd use the equation in the real world. In fact, usually you get these really horrible word problems that aren't really realistic scenarios. They're worded in a weird way to trick you or to test you versus giving you context as to why a certain learning concept is useful.

My advice for parents-- now that my son is older, there are days where I think we need to be doing more. There's always an internal battle of feeling like you're never doing enough, and there's always going to be a feeling like there's more you can do. But at the same time, I'm regularly surprised by the things he's doing on his own, like being really into Roblox, or Scratch, or other online communities.

He's actually built up a little following of friends and communities on these online spaces, and I'm constantly surprised at how he's able to handle and express himself. I can't imagine being able to express myself like that at nine years old. I'm constantly amazed at how naturally a lot of this stuff happens. I'm happy that he is socializing a bit online. While that's something that I would like more in person, the balance can be different for everyone.

I think sometimes we forget how a lot of these things are learned through life. Many times, as the parents, you can get in the wrong mindset by trying to figure out how to get this person to do more. I've realized I don't always need to get him to do more. I could throw a random documentary on, and he's going to be really interested in that. It gives us something to talk about.

My advice to parents that are just starting out, have just gotten diagnosed and have no idea to where to turn to, is this-- when I was in the supernanny mode, I always thought that I needed to parent a certain way. I thought that I had to make them do the right things. I think many of those things are well-intentioned, but I would still go back to the same framework of presenting opportunities. They really need to be the ones driving things themselves. In a lot of cases, it really changes them.

Certain therapies could be very helpful. The main factor in whether or not the therapy is going to be helpful or healthy for you is whether you want to be there. If the therapy is being forced on you, you are not going to be taking away the lesson that's intended at all. There's a very good chance it's going to harm you.

I think this is true for any therapy. It's easy to look up accounts of people who are harmed by something like cognitive behavior therapy, which isn't inherently bad, but can definitely be used in a way that can harm someone if they're not on board with it. I see all these teenagers that are in their room in defense mode, aren't willing to engage because of all the battles that have already occurred, and have already been to 50 therapists and don't want to have anything to do with more drugs or doctors.

They want to sit in their room and play video games all day long. How did they get there in the first place? Most of the time, if they're at that point, it was forced upon them to make everything better. That can be a really long process, especially if there's been a lot of that done, because that probably means there was a lot of harm. Sometimes you need to rebuild your relationship with your child so they can trust you and not feel like they need help because you thought there was something wrong with them.

I remember when I was growing up at that age. Most of what I heard from adults had good intentions, but I heard a lot of fear-mongering stuff, too. I just remember this idea of me bringing up things and not being able to get away with this crap in the real world. All that really did was make me feel like I was on a forced march to a really bad place.

I felt like the message I was getting was, so you're telling me this is going to get worse. Of course, then I want to do whatever I can to feel good now. That doesn't incentivize me to do things differently. If anything, that's going to make me want to buckle down more because you're telling me that it's actually really good right now, even though I feel terrible but it's just going to get worse.

I think it's tough as a parent. But I think, really, the solution is just about finding ways to be engaged, and spend more time with your kid, and have a trusting relationship because, really, as a parent, you don't want to be an authority figure. It doesn't mean that there aren't situations where you have to make them do something that they don't want because those situations do arise. But in general, that should always be the last amount possible. In my eyes, me being the authorities should only come up in situations where there is an immediate danger of harm that I have to prevent.

It should be more of an actual relationship, where there's mutual respect and trust built up, because that's what really allows me to then have those conversations to figure out what my kids really want so that I can collaborate and figure out an approach. That's when they open up and feel like they can have ideas and try things without fear of failure. That way, if they mess up, it's not as big of a deal anymore because they know I'm supportive anyway.