July 2018
Editor’s note: Dylan wanted his story to appear in the NAMI newsletter in the form of an interview. Following are excerpts of the interview conducted at the NEW Center on June 6.
—Lois Maharg
LM: Please introduce yourself.
DF: I’m Dylan. I was born on Friday the 13th. It explains a lot about my personality.
LM: So did you experience mental health issues growing up?
DF: ADHD, that was the first diagnosis, because I was always really hyper as a child. I’ve been on medication since I was 3 or 5, I don’t remember which. It wasn’t until I was 8 years old that I was diagnosed with autism. I would have anger outbursts. I had trouble socializing with other people, I had trouble focusing in class. Whenever I’d get upset in class, I’d just scream at everyone and then go hide in a beanbag chair. I always knew I was different.
LM: What experiences did you have as you got older?
DF: Over time, it became easier to deal with. What was really hard was the way other people would approach it.
LM: Say more about that.
DF: There were so many different approaches. Some of them approached with acceptance. Some of them approached with violence. This one kid whipped me with a pair of jeans. He didn’t like me. He thought it was fun to pick on me.
LM: With all this going on, were you able to focus enough to do your schoolwork?
DF: I was always able to do my work. I always wanted to get it done to show that, “Hey, I know what I’m doing, I’m not stupid.” There were so many people I was going to prove wrong, and I did. I graduated at the top of my class in high school. I may not have been a 4.0, but I had a 3.6.
LM: As you got older, did people become more friendly?
DF: Over time, the more the popular media started covering mental illnesses, the more understanding people became. It wasn’t till celebrities started coming out and talking about their problems. . . . I’m talking about people like Robin Williams battling depression. I’m talking about Carrie Fisher battling depression.
LM: What was your family’s reaction to your mental health issues?
DF: I was 5 when my dad died, and at first my mom didn’t know how to handle it. . . . She is one of the most understanding people now.
LM: Have you gotten any help?
DF: Yes. I’ve been in individual therapy most of my life. I’ve had multiple therapists and psychiatrists. Most of them just put me on medication.
LM: What about other kinds of treatments?
DF: One of the hardest things about having Aspergers is you’re always hypervigilent about your surroundings. Everyone says, “Be mindful about your surroundings.” The problem with autism is you’re always mindful and it gets to be overwhelming. To the point that the mindfulness exercises they tried to teach me in DBT didn’t work.
LM: Have you found that any medication helps? Is it better now?
DF: Yeah, but most of it didn’t help at all. Over time they put me on Seroquel and that worked to stabilize me. But that had horrible side effects. . . . On that drug you fall asleep, you wake up and eat half your fridge. Try sitting in a biology class when you’re doped up on 400 mg of Seroquel. . . . Eventually I dropped out [of school]. I was having some issues. I was battling some inner demons. Depression, suicidal tendencies, suicidal ideation.
LM: How long did the battle go on?
DF: I’m still fighting it. The inner battle against your mental illness never stops. . . . There’s that occasional moment of contentment where the monster takes a rest. It’s very rare, but when I find it, I’m not happy but I’m not sad. I’m just content.
LM: Is there anything you can do to make that happen more often?
DF: It’s just spontaneous. This wave of relief will wash over me and I want it to stay forever but I know it won’t.
LM: Does it stay long?
DF: Sometimes. Sometimes it goes quickly.
LM: You’ve taken NAMI’s Peer-to-Peer class. What did you get out of it?
DF: I thought highly of it. Not only did we learn about different mental illnesses. We learned about coping skills. Most of all it was the staff that made it work for me. They did such a good job.
LM: You mentioned the coping skills. What were some you took away with you?
DF: One skill was to divert your energy to something positive.
LM: Have you tried that?
DF: I’ve tried. It’s hard to, though. My mind can be a very dark place.
LM: What are your plans now?
DF: Long term I think I’d like to get more involved with NAMI.
LM: Do you have any advice for others who are struggling with mental illness?
DF: I have a set of rules I live by. One a them is, always be honest. Dishonesty never gets you anywhere. Another one, cherish every friend you have. I’ve lost a lot friends over time, whether to suicide or a car crash or for some other reason. And no matter how hard life gets, never give up. Sometimes it seems like sun has just been stolen from your sky, but there’s always some semblance of hope, you just have to find it.
DF: And this is some wisdom from an autistic brain that’s been around for a while. Perfection is an illusion. There’s no one on this planet that is infallible, there’s no one that can do no wrong. Everyone has a flaw. That doesn’t mean it’ll keep you down. All you have to do is find what the flaw is and find a way to work with it and live with it. You have to discover different ways and try to make them work, try to make your life better by doing things.