In December, I had the privilege of interviewing Sam, a 27 year old man who has Aspergers. Sam brought along his two friends Erin and Cara. I thoroughly enjoyed talking to all of them. When I was getting ready to post this interview, I asked Sam for a definition of Aspergers. This is what he wrote :

"I would consider Aspergers to be a form of autism, which is something that affects how a person thinks and interprets the world.  Some would say that Aspergers makes a person unable to socialize on a peer appropriate level.  However, I do not feel this is the case.  This world is mostly filled with people called neurotypicals, who are people that are not autistic.  Neurotypicals understand neurotypical social cues and how to understand neurotypicals.  Aspies (Aspergers) understand Aspie social cues and how to understand Aspies.  However, the two forms of reality don't understand each other.  "Having" Aspergers basically gives a person entrance into the one world and not the other."

Me: Are you a student?

Sam: No, I’m not. I work at a local retail department store.  On the dock, I load all the goods… worked there since March of 2007, almost 2 years.

Me: How is it working out? Do you like it?

Sam: It’s nice to have your shift over with and go and play. These guys will tell you- we’ve gone to plays, concerts, Flagstaff, etc. I was in college for about 6 years but I didn’t graduate and after 6 years, I‘d had enough of it. I went to NAU up in Flagstaff. NAU is a great community, great area. I have repercussions with its accommodations. All they would give me was time and a half during tests and the ability to use a tape recorder, which when you play it back, after you’ve recorded your lecture, I’ve found you have to turn it up all the way to full volume and when you are sensitive to sound, that’s no good because you’ve got to deal with chhhhhhhhhh and all the feedback. I lived on campus and had a roommate the entire time. I now know that doesn’t really work, you can’t have two people sharing a bedroom at the same time without a lot of friction.

Me: What were you studying?

Sam: I was an English major. For me it was kind of a time for discovery- the first time you experience the world away from your house. Up until after the first 2 years of college, I never saw myself  as voluntarily a loner although I was given to being a bit lonely, but a lot of the crowds around me were people I didn’t want to be involved with. In high school, all my childhood friends got into alcohol and drugs and they were smoking cigarettes at the bus stop by the age of 14.

Me: You hear that people with Aspergers have difficulty making friends/having friends? Is that the case for you?

Sam: I can’t say that I haven’t had my share. I haven’t had a good friend until Erin and I met four years ago and now we’re inseparable. I was very much a loner, especially in high school and in college , very withdrawn.

Me: Was it hard with your peer group?

Sam: Yes it’s still really difficult. Whenever you’re in a relationship with anyone you have to have a midpoint somewhere, but when you’ve got two people who think on completely different wave lengths, it’s difficult. I end up with a lot of people that look at the way in which I act, my repetitive behaviors or strange interests and I get a lot of people that think I’m weird or a freak . I’ve discovered those are people I usually find to be boring and monotonous. She can tell you some good stories about people she wanted to slap because of these kinds of complaints.

Erin: There is an attitude where people have to fit the same mold, have our hair perfect, dress a certain way, behave a certain way. I like people that break that mold.

Sam: I prefer the small groups that are more comfortable rather than the bigger crowds. I still have trouble sometimes but you gotta love yourself for who you are and in reality, I wouldn’t have it any other  way. I see myself as unique. Have you ever heard of flipping your thinking? You hear a negative comment and you think about it in a positive way. Creepy and weird is also the same thing as eccentric, one of a kind, unique. It’s a matter of how you look at it. So when people tell me I’m weird, I have to say thank you.

Me: Good for you, what a great attitude you have.

Sam: Thank you

Me: What about dating?

Sam: I’ve never had a serious girlfriend. It comes back to that mutual interest. A lot of people in my generation are very very scared. Statistics have pointed out in recent years that people are more likely to be afraid of their neighbor now and so they can’t tell the difference bet.ween the guy who murdered people and the creepy guy next door.

Me: So people are a little weary?

Sam: But I’m fortunate enough to have very good friends that I can connect with.

Me: that’s just wonderful.

Erin: I think it’s easier to connect within a group. I know for me it is and I think  it’s easier for someone who has autism or aspergers.

Sam: Definitely.

Me: When did you first realize you were different?

Sam: As a child. I was very much a loner growing up. To some extent, I view it as an intentional withdrawal . I knew at a young age , that in other people’s eyes, I didn’t really have much of a “life”. I think it's just something I've always kind of known.

Me: When did you get an official diagnosis?

Sam: I was diagnosed as obsessive compulsive, Tourettes, ADHD with a slight case of depression in the mid 90’s, which in case you don’t know, they didn’t have diagnostic criteria for Aspergers back then.I was diagnosed with Aspergers in 2002 up in Flagstaff at the Health Center. The psychiatrist  had me on 3 ½ pills per day and had me carrying around a letter that says I was highly unpredictable . This was because the disability support services required letters like this every once in awhile. I think she lost her job there that year.

Me: What did she have you on?

Sam: Respridol, benzotrophine, clonidine, and an SSRI. They totally screw up your brain. Have you ever felt numb before, like you couldn’t feel anything? Imagine feeling that all the time. I think I just stopped those cold turkey. Now I’m on celexa which is antianxiety and that’s it. I told my psychiatrist- 1 or 2 medications and beyond that, I ain’t playing games.

Me: they all mix with each other in your system. Do you think celexa is helpful?

Sam: Yes, it’s calming. I’m sensitive to light, sound, smell. All she has to do is put on a different lotion and I’m commenting on it. I like the smell of paper- like books- if you ever see me holding it up to my nose.

Me: lights or sounds- does it make you crazy?

Sam: Lights are painful- kind of like some is taking spikes and jabbing up thru your eyes. Some sounds can make me freak out.  Music is calming. The concert that she took me too was fun.I used to get accused of being off in my own world.

Me: How could other people, the world in general, help you?

Sam (to Cara & Erin): What would you say has been effective in helping me reach you?

Erin: Just talking and listening . I don’t baby him or sugar coat him because that’s what friends are for. We try to pull back and let him be him.

Sam: If she sees something that’s rude, she hasn’t been afraid to say something. I’m fine with it. What I don’t like, is what my family does. My mom feels I’m emotionally immature. When I do move out on my own- I’m going to have to do it pretty soon. I’m looking for low income housing. I’m going to have to do it soon or else my family is going to drive me bonkers. Especially since they have to have every light on all the time.

Me: What’s the best part of having Aspergers?

Check in next week and find out!

It’s been almost a year since Mark (our son) went to the hospital.  So much has happened since then and it has been an amazing journey.  Not one I particularly liked, but looking back, I can see an important one of discovery and opportunity for each member of my family.

Mark is still healing and with each day I see more and more of my son coming back to us.  Now with spring almost upon us, I’m anxious for our own springtime to come too.  During what I’ll name as the final stretch of our journey back home, the days seem long and forever standing still.  I miss the days that were; all that we were able to do and had accomplished over the years in our work in loving and helping Mark become all that he can be.  This past year was like being in a sailboat set in one direction and because of strong winds and the storms that followed set us on a completely different course.  It’s a similar story to Christopher Columbus’s landing on our shores instead of the West- Indies.  He may not have made his destination but at the same time what he discovered turned out to be a huge gift. 

Although I’m not sure of the gifts per se yet, I can make up a list of some of the discoveries I’ve made along the way.  For one, I found out that I could get through really tough times, sometimes just by the pure act of “hanging on” and affirming “this too will pass” all day long.  The point is I did it.  And that’s a great feeling.  Or discovering what a great team Frank and I make during crisis mode.  We really learned how to be there for each other while at the same time keeping our energy and focus on our son in helping him to heal. 

A useful tool that was a great help and continues to help, is looking for the good.  Especially during the rough times when we’re  two seconds from throwing in the towel and giving up, I’ll look at Frank and say, “Give me 5 reasons why this is good.”  And before we’ve reached the fifth one, (and believe me, sometimes we just make them up) we’re laughing and back at the place of light heartedness. We’re ready to jump back in and continue fighting the good fight.  I’m proud of us for going the distance and seeing it through (it, being our son’s recovery).  We’re being shaped by the fire and becoming more of who we’re meant to be. 

You too may be going through difficult times or be in a place you’re not really happy with.  I’ve heard that we may not be where we want to be, but we’re definitely where we need to be.  So I hope that you too can find what you need to pull you through.  It’s in there, trust me. All you have to do is affirm it and you’ll see it.  Until the next time…here’s to loving all times.

Kathy

 Listen to an interview I did last year

{enclose AutismTalks.mp3}