In response to the essay I wrote about Daniel growing up with Aspergers, mainly focusing on when he was nine, I asked him if he would like to have his own say on all this now that he’s 22 and has just graduated from college. Here’s what he advises kids with aspergers, parents of these kids, and even himself as a child.
Caryn: Now that you’re 22, what do you wish you had known as a kid about aspergers?
Daniel: That’s a hard question to answer. I’m not sure there is something I should have known. I was well-educated by my paras [paraprofessionals] and you guys. If I did have a foreknowledge, it would be about specific situations I got myself into over the years that I would have changed. But the way it turned out, my aspergers became less and less of a problem over the years, and it’s been less and less relevant as to how I perceive I myself and how much energy it takes to deal with it.
Caryn: What was hard about growing up with aspergers?
Daniel: I didn’t have what an average person would call a social life until college.
Caryn: What was that like for you?
Daniel: It was an intensely lonely. I think I compensated by becoming fairly addicted to playing video games on my computer throughout junior high and high school. And I was very discouraged from really improving myself because of how lonely I felt, so I was very out of shape and led a very sedentary lifestyle until I got to college.
Caryn: How does aspergers affect you today?
Daniel: I would guess much less than when I was a kid. I have painstakingly learned over the years how to manually focus on social cues, gestures and situations; I have built up that over the years. I have read many books on social situations and how to deal with them. What’s more of an issue for me is my ADDD. I’m not longer ADHD — hyper — but from my knowledge of things tends to get worse for almost everyone in their early 20s with ADDD, and I’m learning how to deal with that now in a fairly successful manner.
Caryn: How are you dealing with that?
Daniel: By scheduling my day out without becoming hyper focused on it, and finding that focus between becoming spontaneous, and [learning more about] the way I do things during the day and at the same time getting focused and getting what I need to get done as I prepare for the next section of my life
Caryn: What do you anticipate for your life next?
Daniel: A lot of excitement and active learning through direct action whereas in college, any direct actions I did were relegated to my social life and clubs because of a traditional lecture-lased learning experience. What’s next will occur through domestic and then international service work with likely a variety of organizations until I apply to grad school 3-5 years from now.
Caryn: What’s hard for you now?
Daniel: Creating a new social group since all of my friends that I had made at college (and enemies for that matter) are not dispersed around the country and elsewhere, and I have few contacts in Lawrence, so I’m pretty much starting from scratch but I’m confident about putting that new group of friends together.
Caryn: What’s helping you at this point in your life?
Daniel: Being focused on the tasks on hand, knowing that I have planned out a pretty good future for myself for next half decade or so (which will still give me flexibility).
Caryn: Is there anything you wish we had done as parents for you that would have made it less lonely while growing up?
Daniel: I think you guys did all you could do and probably more than the average parents based on my experience with other people with family problems over the years. In high school and junior high, there are a few minor things — it would have been nice if I could have been persuaded to play video games less and lead more of an active life style, however I was so adamant about what I was doing at the time that I’m not not sure what a successful approach to that would have been. Additionally, you guys could have forced me into more organizations with social group stuff, but then again, I’m not sure how successful that would have been.
Caryn: For kids growing with aspergers, particularly ones who fee isolated and lonely, what do you want to say to them?
Daniel: Make use of the resources at the schools you do go, especially reach out to paras and counselors. Don’t get into a frame of mind where you think you can do everything by yourself. I only took medication for my aspergers one semester in college but I feel each person needs to approach that based on where they are, and also stop if they feel that by taking it for a while, they’ve gained the tools they need, but then again, it’s really about each person’s mental state and where they’re at as to whether they take meditation.
Caryn: What advice would you share with parents of kids with aspergers?
Daniel: The same thing I said with counselors and paras, ideally all within the same school so that it’s part of their daily life and not separated out. Making use of school-based tutors if possible that would specialize in how people learn. Getting their kids involved in more active projects instead of the usual school experience, so that could be with clubs (active ones) and other community activities. Don’t allow your kids to isolate themselves from social situations that will cause more long-term problems than you may realize. At the same time, give them space whenever they feel overwhelmed.
Caryn: If you could speak to you 9-year-old self today, what would you tell him?
Daniel: I would tell him to start getting help with school work then and there instead of passively attending the occasional special ed programs I did in high school and junior high. I would have encouraged myself to start getting in shape a little more, being more active in environmental organizations, and not to afraid about putting myself out into social situations. And I would not ask myself to stop being outspoken about my opinions.