Struggling to Connect, Fatherhood with My Asperger's Child. Chapter 4, Not Worse, Just Different. My name is Shane, and I have one son who is 13 who has high-functioning autism. He probably would have received the diagnosis of Asperger's, but they don't technically give that anymore.

He was about eight years old when we got the diagnosis. I know, for some dads, that's a big emotional ordeal in thinking that there's something different with their kid, and others don't care and are actually grateful. My wife, who's an elementary school teacher, had driven most of the diagnostic process. So she recognized a lot of the things long before I did and put him into occupational therapy prior to getting an actual diagnosis. To be honest, once we got the diagnosis, it confirmed what we'd already been working towards, and it was more of a relief, so that we now knew that we were dealing with, and we could work to help him get what he needs.

The doctor told us, because of the diagnosis, he was entitled to an IEP and even warned us that the school may resist a son an IEP and just put it at a 504. The main difference is the amount of resources that the school will dedicate. They don't want to be on the hook, because it's more effort and more resources. We applied for an IEP, and the school argued against it and gave us a 504 plan. Either way, he got some accommodations, which definitely helped in elementary school.

Early on, in those third, fourth, and fifth grades in elementary school, the 504 plan worked just fine. We would have a meeting, the teacher would tell us what his struggles were, and would make suggestions about what works for us. We had two meetings a year, and it worked really well.

Generally, the teachers were able to adapt. For example, he gets through his work faster than most. So we suggested to the teacher that if he got his work done in class, then they should allow him to just read. That way, he's not getting frustrated, and he's content.

As he got to middle school, though, we noticed a bit of difference in the teacher's expectations and in the 504 plan. Elementary school teachers are much more hands on, much more willing to hand hold, to a certain extent. In middle school, it's a bit more about teaching kids independence.

We struggled early in sixth grade with organizational skills. He was just not set up well when given an assignment to budget time out and create a plan. He fell behind fairly quickly. We had to scramble with the teachers to get that back online.

When he's engaged in the subject matter, and he likes his teacher, everything goes smoothly. If there's some disconnect, meaning he doesn't innately understand the subject matter and/or doesn't have a connection with the teacher, then he just shuts down. For example, we found out, in our 504 meeting, in the middle of seventh grade, that he was sitting under his desk for most of maths class and completely shutting down. Apparently, that had been going on for a few weeks.

As we get closer to high school, we are pushing for an aide or some form of counseling service to meet with him one on one. The hope in high school is that we will have more chances to meet with people and check in on a regular basis. The high school that his sister goes to has a robust inclusion program, not just for autism but any kind of disability.

Thankfully, even long before middle school, there have been some great resources that have been available to us since the diagnosis. There were several clinics at the doctor's office that we went to that were really helpful. They had things like a feeding clinic that we were able to get involved in, a pill swallowing clinic, so that we could get more supplements into him to help with the eating, and a blood draw clinic, so that we could help him with getting tests done.

The pill swallowing clinic teaches children how to take a pill in a progressive way. They start off by swallowing sprinkles that you put on your ice cream and then a slightly larger pill and then work their way up. Some of the supplements that he takes, like magnesium and fish oil, come in fairly large pills, so it was a way to get him to be able to swallow those.

Because he was such a picky eater, the feeding clinic introduced him to new forms of food, and again, that was the same concept, where an occupational therapist set up a plan for him to get to try new foods in small increments at a time. Each week, we would have him pick out and try a new food. It helped to expand the amount of food that he was able to consume, and then we were able to dial back on some of the supplements.

We expected some resistance to these new processes, but once we explained the reason why, he was generally OK with it. The idea of breaking up his routine to go where we want him to go all of the time created a little bit of resistance. We don't frame these programs as necessary because he's on the spectrum. We usually frame them as questions, asking him if he wants to try this or if he could come with us to the visit.

The blood draw clinic used a similar type of progressive program. They put the tourniquet on the arm first, got him used to feeling that over several visits and then, eventually, were able to stick a needle into his arm for vaccines as well. It was awfully hard to get that done, but he's able to tolerate it. We were able to get him to a point where it became more manageable. The hospital where all these clinics were offered is a phenomenal facility, and they have outpatient clinics all over our local area to make those resources available.

Not having the understanding was a struggle. One of the biggest struggles before his diagnosis was not knowing or understanding why things were the way they were. Why does he feel this way or act this way? What are the things that make it difficult for us as a family?

One thing that we learned early on, after learning more about autism and Asperger's, was how to talk to him-- set schedules, plan ahead of time, and give reminders in advance. Those things really improved life for us and for him as well. We started seeing fewer meltdowns when we started scheduling things ahead of time, letting him a week in advance that we were going away for the weekend, and then talking about it leading up to it.

The thing that I struggled with 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, OK, 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 to 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, we would try something a little different. I think now, as a 13-year-old, we're a bit past some of the major meltdowns. We still get some, but we've learned to adapt and 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.

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 to 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 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.

We're starting on working at a job now, just trying to make sure that he understands cutting our grass. You cut the grass, it's a chore, and you get paid for it. Then, we'll move on and help him understand other parts of work, but we're starting small.

Although my expectations on fatherhood have changed, I wouldn't say that my life is somehow in a way irrevocably changed in a way that I'll never get it back. It wasn't that at all. I recognized that in his accomplishments, whether they be sports related or not, I appreciate so much more than I think I otherwise would have.

That came fairly early on after the diagnosis, when I started reading about it more. I started understanding a little bit more about how his mind works and what he needs to overcome. Now, I appreciate the struggle that he had to go through a lot more.

Acceptance and Looking Forward to the Future. One of the big things is just accepting what is and working with where he's at at the moment. It's only a problem when you start to measure against milestones on an expected timeline, such as getting a job and driving.

There was always an assumption that both of our kids would go to college out of high school. Now, I'm starting to think about that. He's only 13, but is he going to be ready for it at 18, the way most kids are? That's unclear to me right now.

And what kind of job would he get? It probably wouldn't be something that has a lot of interaction with the general public, like in a retail establishment. What are those aspects from a job perspective that may need to be adapted to? He's already identified that he wants to be a librarian, which is a perfect job for him. He would be happy being surrounded by books all day.

At some point, we'll have to get him exposed to the specific aspects and expectations of that job. He would love to be able to read all day. I've talked to him about being a proofreader or an editor. He might be good at that.

Ultimately, I would like him to be able to live independently. I want him to be able to get whatever job he wants and be able to live on his own without struggling. That's not something that can be accomplished overnight, but I think that's the biggest goal. If we could get that, I would feel like I did my job to get him ready to function independently and, more importantly, be happy with what he's doing.

All in all, for those who haven't gotten a diagnosis for their child, I strongly recommend that you get an evaluation. I think many parents are afraid to get the official diagnosis, because they don't know what it means. Once you have a diagnosis, you have a step towards moving down a different path.

It's not a confirmation of how things are going to change for the worse. It's just a different path to get to the same place. There just might be a few more twists and turns.

Once the diagnosis is confirmed, it's a way of understanding how the child's brain really functions. It's about understanding and then acceptance. The purpose of it all is not to change or look for a cure. It's understanding that this is who he is and then accepting that and really appreciating all the positives.

I think there's sometimes too much attention given to what some people would consider the negatives of being on the spectrum, because there are just as many positives. We enjoy our son's grasp of language. When he pulls out words we don't normally use that he reads in a book somewhere and then uses them in context, it's a fun interaction. I enjoy it at this point, and that's only because I've put some effort into it.

For anyone that's out there and doesn't understand or is afraid it's really not a negative, I think that's the biggest thing that I want people to understand. I have friends and relatives that don't quite understand what we and my son goes through in terms of just daily tasks that take more effort than most people are used to, but that's just the way it is. The easiest way to move forward is just to accept that, sometimes, those tasks require more effort, and if we accept it, then he won't see it as being any different or feel he needs to be concerned about the fact that he's on the spectrum.