Struggling To Connect: Fatherhood With My Asperger's Child
Dads Share Their Mistakes, Emotions & Lessons Learned Raising Their Spectrum Kids
About This Book
"I call myself an old-school father, and I am my father, God bless his soul. I had certain expectations of my son. He was going to be the high school star athlete. I'm a big golfer, so he was going to be a great golfer with me. But those just simply aren't things he's interested in and that’s a hard thing to come to grips with.
I would say the big "aha" moment for me was about a year and a half ago where I finally understood that he just thinks differently from me. That was the big "aha" moment. I'm still not a perfect father, and I still rely on my wife to help me. But that was really the big key, determining that he's not wrong, he just thinks differently. So understanding what motivates him, and what drives him, and how he thinks was the big change for me."
This book contains stories from fathers of kids with Asperger's & Autism that delve deep into the personal struggles, revelations and wins as they attempt to successfully raise their unconventional child. Within these pages, you'll find advice, inspiration, hope and perspective as dads with kids aging from pre-school to post-college share their experiences.
We've collected these stories because, while there is a ton of books out there telling you what to do (or more accurately, usually they're telling you what you are doing wrong), there are very few books that simple share the stories and perspectives of other fathers raising kids on the autism spectrum. It's our hope that this book helps you to realize that we are truly all in this together, and you aren't nearly as alone as it may seem.
About Asperger Experts
"It's a struggle between wanting to do what society expects of you as a parent versus doing what works for you and your kid. To be honest, I came into fatherhood thinking, I'm going spend a lot of my fatherhood coaching sports. That ended up not being the case at all.
He never really got into sports in any shape or form. Not competitively, anyway. He swims for fun, but not competitively. That was something else that I had to adapt to. My thoughts on what fatherhood is have changed. I don't need to be the father who's going to teach him those kinds of things, and there are other things that he needs to learn from me."
When Jackson was little, as we were figuring things out, noises would set him off. He was a loner and wouldn't interact with other kids and other people. With my other kids, they'd run up and give hugs and spend time with family and friends. When they cried, they'd come to my wife and me. But Jackson wasn't like that. When he cried, he would push away and run away. My wife was his person and still is his person, and every now and then he'll come up and give her squeezes.
It was hard for me because he wouldn't relate to me on the level I wanted him to, and it felt like he didn't like me. I was just so used to kids that would show their affection. So he and I didn't have much of a relationship. During the times that I would want to be there for him as a dad, when I could tell he needed something, he wouldn't let me be there. When he was just a kid running around, he wanted to be by himself and do his own thing.
I'm a very loving person. I like hugs, and I'm pretty outgoing, so for me, it was really hard. It was really hard to think that this kid that I love with all my heart, might never have a relationship with me, or that I wouldn't be able to talk to him or help him when he had questions. He didn't understand what I was trying to do to help. He didn't see what I was trying to do as being helpful. It just broke my heart.
It wasn't until around the age of eight or maybe nine that he started to realize that I cared about him and that I was actually smart and knew a couple of things. He's highly intellectual and loves to have deep conversations, so when we left the area of needing purely emotional support to more of being able to have advanced conversations, we finally started to build our relationship.
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 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 of the information. All sorts of sensory sensitivities are 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.
I knew there would be some rough things along the way. The real eye-opener was trying to discipline him. We're not talking about corporal punishment or anything like that, just time-outs. It seemed like the more I did it, the worse everything became.
My wife actually pulled me aside and said, "Hey, this isn't working. You need to nurture a little bit more." So I started observing my wife because she's a little bit better with nurturing my son. So I did what I did best, and went to go learn. Like I said, a lot of books. I think the first book I read was by Temple Grandin. That was a real eye-opener for me as to what was going on, and everything just changed from that point forward.
We still have some rough patches. He still has some sensory issues that we're trying to work through that affect everyday living. But by and large, we're just trying to deal with it the best we can.
The thing that I struggled with the most as a dad was that I didn't realize how much I had to adapt to what his needs are. Once I got on board with that and started to understand how his mind works a little bit, then I was able to say, "Okay, this is fine. I can work with this." And it didn't take that long. As long as I don't worry so much about the meltdown, but instead try and figure out what caused it, then we'll try and avoid that the next time.
A lot of it for us was trial and error. If it caused a meltdown, we later asked him the reason. When we got a response, then we would try something different. I think now as a thirteen year old, we're a little bit past some of the major meltdowns. We still get some, but we've learned to adapt to try to allow him to be who he needs to be.
Sometimes I struggle with knowing the line between accommodating and setting boundaries. For example, he has his friends online that he plays video games with, and they are a good group of friends. Most of them he actually either goes to school with or has gone to school with, so we know who they are, but there are times that he just doesn't play the same way as they do. He has different goals when he plays, and then when they don't play the same way, he'll end up throwing a fit and throwing the game controller around.
I get frustrated that it's going to get broken or that he's going to break something, and so I tell him the consequence that if you break it, you're going to have to buy a new one. I'm not necessarily going to reimburse that. I don't think that method works all the time, but it's something that I'm still trying to figure out. Do I ignore it because he tends to have a shorter meltdown and within an hour he's fine? Some of that adaptation for me is just that's who he is and I just need to accept it.
I realized that he often couldn't answer me because I didn't ask my questions well enough. As soon as I understood that he wasn't not talking to me, but was rather trying to figure out what it was I was actually asking, I could change the way I questioned him. Instead of asking, "What did you do today?" I could ask, "Did you do anything today in particular that you thought was interesting?" That made a difference. All of a sudden, we had communication. It wasn't as free-flowing as I might've liked, but at least the frustration was gone. I could see him pause, which let me know that I asked that question badly, so I'd try again.
He has a number of friends who are also on the spectrum. They might come over and when I would ask them a question, I could see I was doing the same thing to them. I would stop, reconsider the way I was asking, and start again, and then we would have our conversation. Those two books made a huge difference. They provided the original impetus for me to start looking at my behaviors and realizing how I could change rather than mourning the relationship I had lost. Now, that's not to say that I understand my kid, although I think that most parents will say that. However, I'm not as frustrated as I had been, and we have a healthy relationship now.
Hello, my name is Kevin. I live in Massachusetts and I have a seventeen-year-old son that is autistic, and I just love him to death.
He was formally diagnosed at the age of ten or eleven. Prior to that we were thinking it may have been ADHD or OCD. When we got the diagnosis, I didn't really care. We were living real events, real issues, and it was what it was. I don't know that we had any real attachment to it, but it did give us a clearer path forward and I think we were somewhat relieved with that.
My wife is a nurse practitioner, and saw early on that there were some learning and behavioral difficulties. She's the one who really started us down the path of finding out what the diagnosis meant and getting him services.
He is adopted, so being adopted from a foreign country and autistic as well, meant that many of his challenges were a combination of him coming to grips with being adopted, as well as him also understanding that he is autistic.
I'm Lucas and my son is Thomas. He is twenty-two and has Asperger's.
He was diagnosed in 2002 when he was just about five. It was interesting. We looked into getting a diagnosis because he was just doing things that were a little different than everyone else. He was first tested when he was five, but I would say the official diagnosis came two years later when he was seven and in first grade because that's when we started noticing the little bits of stimming that he would do. His teacher would tell us that he would walk all the way around at recess, not interact with other kids, and yet he could tell the teacher everything that everyone was doing. My wife was also a schoolteacher, that was her training, so she started recognizing some of the signs before I ever did.
When we were first told the diagnosis and everything, it didn't really hit me because he was still kind of doing everything that a kid would do. He was playing T-ball. He would play soccer. He wasn't the greatest at it, but that was no big deal. He had some friends, and he would play with his animals at home. When it's your first kid, you don't really see those differences.
My wife related to the diagnosis, as she had bouts with anxiety. Even though she never herself got tested, she always kind of related. She would say things like, "That's my kid." "He's like me." So it wasn't a surprise, I guess.
Part of what got me going before I even found Asperger Experts was that I had listened to an audio book called My Strange Son, and it was about a lady from India who taught her son to communicate with her via a machine that they made. Because of the machine her son was able to explain to her what was going on in his mind, that he was having sensory overload. So many things were coming at him so fast that he couldn't process everything. One of the things that she talks about was where he looks up, he sees an airplane, but by the time he recognizes that in his mind, someone is showing him a banana and now the two things don't match. That was frustrating to him; he couldn't absorb the information in time before it disappeared.
Once I understood that, I was able to start to relate more with Thomas, to understand that that's what was going on. Things were coming at him too fast, and when there was too much stimulation, he would shut down. It wasn't until I listened to Asperger Experts that I really realized that he's in Defense Mode and it's like if you had a million people touching you and listening to loud noises at the same time while there were extreme temperature changes and everything going on. So I had to learn about Defense Mode and develop some empathy and understand more about what was going on with my son.
In dealing with my son's size and physicality I really had to learn how to control my emotions in order to help him control his emotions. I grew up with a father who was a very strong disciplinarian. If you acted up in my dad's house, my dad put it backhand on you or smacked the snot out of you. It was a different environment and a different time. But the main point is, you did not question my dad's rules.
As Josh developed and his behaviors showed themselves more, I learned that I had to deal with things differently. If things escalated, I would put my hands in my pockets and approach him in a nonthreatening manner saying "Hey dude, what do you need? I'm not mad at you. What can I help with?" And that seemed to help bring his level down. In times when he would get physical, I would grab him and put him in a bear hug, and as I was holding him I would calm him down saying, "You're all right." "I'm not mad at you." The pressure of me holding onto him and the tone of my voice seemed to ease him.
That being said, to say that through the years we haven't had a hole or two in our house would be lying. Whether Josh put it there or whether in the emotion trying to grab him, we tussled a little bit, regardless, as I learned to control my emotions, he learned to control his. Through the years, I've got a booming voice. I coached football for years and I learned that me yelling at him did nothing but increase the escalation.
After high school, his mom really wanted him to go to college, as did I. I think he could be successful if he found the right degree or the right program, but he has never found something that interests him enough to do it. He started going to the local community college here and he just would not do the work. He would skip class and wouldn't do any of the basic things to succeed, at all. So it was a waste of our money and a waste of our time to send him.
He was content to stay at home and play video games, but we pushed him to get a job. He's had several jobs since he was eighteen, maybe six or seven, mainly retail. He worked at the Goodwill going through their donations of boxes. He also worked at Walgreens and at a department store nearby. He was also a stock boy. So he's worked at several different places. Right now, he works at GameStop part-time. He also has a job at Best Buy. He's had a lot of the same issues with his jobs that he did at school. If he wasn't interested in it, he wasn't motivated to do it. That's just kind of been his frame of mind from day one.
He's now twenty-five and he lives at home. His mom still washes his clothes and generally cooks for him. He does know how to do these things, but his mom's a bit of a spoiler, so she tends to do just about everything for him. I don't know if it would change anything if he had to do his own clothes, but he doesn't seem very motivated to move out. That being said, I love having him around. He's a great kid. We really have fun together now that he's a grown up. But it's just been a struggle to get him to take his life seriously, and think about what he wants to be, and work towards that goal.
My name is Owen. I am fifty-six years old and a father of five daughters. My fourth oldest child is the one that has been diagnosed as on the spectrum. It was a very interesting journey as we tried to find out what was happening with her and getting the help and resources that she needed. At the end, we actually ended up discovering that I also had it!
I always had an idea that something was different about me in the way I related to other people, and the way I interacted with my peers. There was always something off, and my peers knew it but did not know how to explain it. I knew it too, but didn't know how to explain it either. I came from a generation where we didn't believe in doctors. We did not believe in going to seek medical help unless it was absolutely vital. So going and getting diagnosed at a young age was something that never would have happened.
As a child I was labeled and called every kind of thing. I was "hardheaded," I was "rebellious," I was "different," I was "weird," I didn't want to "conform." I did all the little nonsocial things, but I was told that I was "too smart" and "too verbal," so nothing ever really came of it. I went through my life just saying, "Ok, I'm just really different. I'm going to avoid people and try not to deal with them as much as possible." I became a hermit in the sense that I just went to work, came home, minded my business, and didn't bother with anybody. As a result, it began to affect my work life. It began to affect my family life. I had all kinds of struggles. I couldn't relate to other people, other people couldn't understand me. Looking back, it is extremely clear-cut that I've had Asperger's all my life, but it just wasn't obvious until my fourth child.
Some of the similarities we picked up right from the start. The way she interacted with people, the way she would hide from people, the way she would talk to people. Sometimes she would be so soft you couldn't hear her, and then sometimes so loud you could hear her a mile away. Very smart, very intelligent, but very people-averse. She did not want to be around people or talk to them. It reminded me of when I was young, I would go and hide in a tree house that I made. Other times I would run into the woods with my sleeping bag and bury myself under leaves and hide. Likewise, she built a little hidey place under her bed where she would run to when she was stressed out.
We were just so similar, it wasn't long before people started saying to her the same things that they said to me. "What's wrong with you?" "Why can't you just fit in?" And so that began to be the first inkling that there might be something different worth checking out. So we got her evaluated and they came back with the diagnosis of Asperger's. That's when the light went off for me.