Interview With an Adult Aspie and Close Personal Friend

I thought it would be interesting to get the view point of an adult with Asperger’s Syndrome. The first person I have chosen is my dear childhood friend, Rachel Kusama

First, I will provide a bit of background. Rachel and I attended school together from Third Grade ’til about ninth grade. We did not start off as friends. We rode the same bus and pretty much couldn’t stand one another until seventh grade. 

Unknown to each of us, the other was going through many hard times. She was an undiagnosed Aspie (who didn’t get diagnosed ’til she was an adult), and I was living in an extremely abusive family. We each had our own cross to bear; we were only trying to survive from moment to moment.

To me, Rachel was odd and annoying. She was blunt and she stared a lot. She had no social graces and didn’t care what others thought. 

I too was socially awkward, but I dealt with it by pulling away, only dealing with those who were obviously nice and non-threatening. I spent a lot of years being invisible, because I had learned from the abuse at home, that being unnoticed could be the safest bet. 

Rachel and I fought a lot those first few years. We didn’t understand one another and didn’t know how to relate. I yelled at her; she still did her own thing. 

One day, we were on the bus, when she did something that really got on my nerves. I swatted her aside her head. She swatted me back in exactly the same manner. 

The funny thing is, that was the point at which the walls came down and we became friends. It was like a sort of respect developed between us.

From that point on, we were usually quite tight. We sat together on the bus and played role playing games. She helped me to get in touch with my imagination, which was stunted from lack of encouragement and having no toys growing up. 

We sat together at lunch and had the most interesting conversations. We were never alone after that. I defended her against bullies and she gave me something to look forward to each day.

Rachel has come far and deserves to be recognized. I hope you will open your heart to her and absorb the beauty that is my Aspie friend. 

 

Maxine Owen: Welcome to my blog, Rachel Kusama. Thank you for joining us here.

Rachel Kusama: Hey thank you for having me; I need more coffee. I’m going to grab some coffee before I start with the rest of these questions. Maybe some iced tea too.

Maxine Owen: Rachel, we grew up together. I have known you for many years, but it was not until you were an adult that you discovered that you were an undiagnosed Aspie. Can you tell us about your struggles with fitting in as a child?

Rachel Kusama: You might be a better person to discuss this because in some part I wasn’t overtly aware of any issues regarding fitting in. People were mean, but it had little meaning; nuerotypicals are at times unpredictably emotional.

For example, I remember a mutual friend of ours was pouting in the cafeteria, around 6th grade. I remember asking her ‘Are you ok?”, and her response was “I’m fine”; I proceeded to carry on conversations with you and a few others at our table. Later in the day, she would tell me how awful of a friend I was because I couldn’t “tell” that she was upset and that I should have asked.

I  think the largest struggles would have been with educators who took my precociousness as an insult to their education, and some took great lengths to make sure that I “knew my place”, to include making disparaging remarks to me in front of my peers. I would often be accused by these teachers of “cheating”.

I remember one event, where the teacher loudly proclaimed (well, it seemed loud to me) that I had cheated, and that I would be staying in during recess to retake the test. After my peers left the room, he hands me a piece of paper with which I was expected to retake my test with. Before handing it to me, he made a big show out of wiping a large yellow and brown booger on the upper left corner of the paper.

I scored 100’s on both tests. School was not very hard for me, it just wasn’t challenging.  I think aspies may come off as a “know it all”, simply because we appear confident in our knowledge and anyone nuero-typical who may have any self doubts or insecurities may view this as an offense.

QUICK TIP: Don’t test your aspies I.Q. because you will be disappointed. If they test high like I did, you’ll set them up for failure. If they test low, you’ll feel like a failure.
Your aspie, does not CARE what their I.Q. is.; you do. I.Q. does not correlate to ability (yours or theirs.)

And, as you can see, the views of others really never played a role in my development. It isn’t to say that I didn’t care about my peers, I just didn’t care in the same way that they did.  

I totally forgot to mention “imagination” and “gullibility”.  I have very vivid, colorful dreams; it’s always some kind of wonderful adventure. The part of us that may not show emotion in the way that is expected, does have this huge capability for generosity that can be misinterpreted as weakness.
I remember in 6th grade, when I was the last to figure out that Santa Clause wasn’t real (no one could logically prove otherwise.), a friend took it upon herself to convince me that Bigfoots lived in her yard.

I was enthralled with her elaborate lie and even defended her against other friends, including Maxine who seemed to be incredibly upset. (In some way, Maxine has always been protective of me, even before she considered me to be a friend. ) Eventually, this “friend” admitted that she lied and was doing it because she was jealous of how much school that I missed for medical appointments. (The seizure meds that I was on are very harsh to your liver, so I had to get blood tests all the time, in addition to eegs, mri’s and catscans; I’ll probably die of a brain tumor considering how much radiation has been pumped into my body since a young age. ***is that offensive to say?)

I totally forgot to mention “staring”. People still seem to think that I’m looking at them, when the reality is that there is something interesting to me that their physical presence is blocking.

Most recently, at the gym, as I was walking and talking with my friend, I noticed what appeared to be a large container of an Iced Tea looking substance on the counter of the gym’s “Smoothie and Drink bar”. I began contemplating how much I love Iced Tea, and if I should purchase it; what if it isn’t Iced Tea, and is in fact, some weirdo “health” concoction? Is it tea, isn’t it tea!

In the midst of my quiet inner debate, some schmuck says loudly “should I pull you over a chair?”. I ignore him and walk over to the Iced Tea looking substance; I really like unsweetened Liptons Iced Tea, with lots of ice.  While I am walking past he says “I can pull over a barstool so you can watch how about that”.

I didn’t realize until after I inquired about the Iced tea,( that turned out to not be Iced Tea , and was in fact, some gross health drink concoction,) that the idiot was talking to me. The upside is he looked like a wanker because I was completely oblivious to his rant, until I returned the following day and my old personal trainer shared the story (they thought it was hilarious.) Up until that moment, I didn’t take the situation as anything more than odd coincidence.

QUICK TIP: Let your aspie stare. They probably aren’t looking at people, so just laugh at the idiots with overinflated egos who assume their self importance is radiant enough to capture an aspies attention.

Maxine Owen: What made you seek a diagnosis?

Rachel Kusama: An acquaintance who was working on her PhD at the time, suggesting that I consider it.

I reflected back and remembered my Neurologist mentioning something similar but not wanting to label me.

All it means is that I’m not as “unique” as I thought I was. Ha ha!

I just wish that I could find a therapist that specialized in adults with Aspergers, not just in the diagnosis. My thought is that, I take my car in for tune-ups, I go to my Doctor for checkups but there really isn’t anyone I can go to who is experienced with adult females with aspergers. I’m not dead, so my expectation is that I must always “move forward”(improve).

 

 

Maxine Owen: When the diagnosis came, did you have any doubts about it, or was it like the pieces finally came together?

Rachel Kusama: It made sense. I wasn’t devastated, I wasn’t elated; it was more of an “Ah ha!” moment.

Really, knowing me for all these years (with respect to you, I won’t list how many years. Ha ha!), were you surprised? I don’t think that anyone, especially our friends who have children with aspergers, were surprised. In fact, I bet their responses, including yours, probably varied between “No Shit” and “No Duh”.

Maxine Owen: Tell us about some of the struggles you still face today, as an Adult Aspie.

Rachel Kusama: Nuero typicals. ‘We love to debate” they proclaim, and then when an aspie presents them with logical arguments and evidence, we’re suddenly “mean” people.

Some nuero-typicals say such silly illogical things and yet we Aspies are the ones labeled as conversationally impulsive.

I really only know of one other female aspie, and we have such different lives and lifestyles, that the only thing we have in common is motherhood. (I should introduce you to her. She is famous, a member of Mensa and a fellow gamer. I think she’s a wonderful person, and an incredible mother.)

For me, academics aren’t a struggle. My marriage is pretty good, although it is my second (I’ll explain more about that in a bit), my husband really “gets” me and likes me.

My first husband was an alcoholic; brilliant man but he thought that the only way people would like him was while he was drinking. Things accelerated downhill. Coincidentally, his father died from the physical effects of a lifetime of alcohol abuse. My lack of interest in drinking, was enormously disappointing to him; his disappearing for days at a time, then reappearing in a puddle of puke and urine on our front porch, was enormously disappointing to me.

So perhaps another issue with ‘Aspies”, is even in adulthood, we can be easily misled. But, why anyone would want to mislead a person who is capable of looking at you like a “bug under a microscope” is illogical; silly and illogical!

The female “aspie” perspective may be vastly different from the males, because we are culturally raised to be more “sensitive”.  We are treated differently. Our “quirks” are cute; nerdy girls are trendy at the moment. Studies on aspergers, in the past, were on samples that were exclusively male.

We are well aware that with other health issues, such as heart attacks, women exhibit different symptoms than males to. I believe that the same can be correlated to why we don’t diagnose as many females with aspergers.

   I find that by being open, people are more understanding and more likely to tell me when I have said something offensive to them (it doesn’t make what I said “wrong”, so much as the wrong “time” to say it.)

One of the most frustrating is the deniers, who tend to have a more genetic connection to me.  They can’t make up their minds whether I’m an asshole, mentally damaged, highly intelligent or precocious; I can’t predict which one they will define me with at any given moment, because it’s unpredictable.

If I don’t like something and I can define it as illegal and or unethical, I will say something. If I am wrong, I accept my consequences and make amends to the best of my abilities, or to the best that they allow me (some people don’t want to make peace, they are too addicted to the turmoil.)

We aspies accept “you” with your imperfections that we have probably already quantatively analyzed, but we hopefully haven’t told you that. We will be your most loyal defender, and probably can counter any insult or derogatory remark hurled at you with precise evidence. We aren’t blunt because we enjoy hurting you (we are not collecting your tears to use as an alternative source of water for our plants.). Don’t get offended when we turn down your invites to clubs, concerts or bars – if we want to do those things, we’ll invite you, and if we do those things with you, we may need a few days or even weeks to “heal”.

 

Maxine Owen: What are some of the advantages, as you see them, of being an Aspie?

Rachel Kusama: The deep devotion we have to people that we care for. It’s beyond physical, beyond emotional; I don’t know how nuero typical “feel”. The biggest myth is that someone with aspergers doesn’t feel; we feel deeply, it’s just so incredibly different.

For example, last fall I lost what would have been my third child, during my second trimester. My placenta tore; I had just begun to feel the “butterflies”. It was devastating, it’s still devastating.

  And I remember entering this depression, which is probably not the same “feeling” that others may experience. I wasn’t suicidal, I just felt as if my psychological temperature gauge had transitioned from White, through Grey to Black.  The day I returned from the hospital, I spent the day in bed sleeping, while my husband and mother helped the children get ready for school.

My daughter was so upset because our routine (aspie parents are in my experience great with routines.) was for me to bathe them, dress them, feed them, have them brush their teeth and then I would brush and style her hair.

Her teacher emailed me to tell me that my daughter had a rough day. I did a brief self analysis, and realized that no matter how horrible I felt, that I must suck it up and work through the routines for the stability of my children.

So I scheduled an appointment with a counselor. Some of the best advice that she gave me, was to give myself a “Pity party”. It didn’t mean that I had to force myself to cry, but to give myself an hour a day of alone time, to allow myself to think, to analyze and to work through this event.

Some funnier aspects of being a parent with aspergers, is the results of events that we believe are logically beneficial. For example, I taught my children the appropriate words for their genitals. My theory is that it’s appropriate and if something bad were to ever happen, they could get the appropriate response to a serious issue. (“Someone touched my cookie” doesn’t intone the same serious response as “Someone touched my vulva”.)

The result of this “brilliant” parenting idea, was revealed to me when my son started to take his pants off during a shopping trip at the local Walmart. I struggled to get him to keep his pants on, all while my two year old is screaming, “No Mommy! Penis out!”.

Maxine Owen:
Is there anything you would like the rest of the world to know about you or other Aspies? Is there anything that you can reveal that may be helpful in helping neurotypicals to understand or relate well with Aspies?

Rachel Kusama: It would probably be unethical for me to set the standard by which to judge or even assist other aspies.

 

Maxine Owen: Is there any advice you would like to give to younger Aspies who may be having trouble fitting in?

Rachel Kusama: Work your ass off to get into a  pre-college upward bound program. MMORPG’s are a great social outlet because you will be judged by your intellect and ability, but don’t neglect your health.

People can’t understand what they can’t “see”. This same negative reaction is not exclusively directed at people with aspergers; it isn’t you, it’s them. You know that they are illogical; keep it to yourself.

Maxine Owen: You are a successful college student, a good wife and mother, and you now have many friends. You have come a long way. Can you tell us how you have made all of this work and what your goals are for after college?

Rachel Kusama: I left the area that we grew up in because at that time it was not conducive to my growth. People made some pretty awful assumptions, and there were limited if any opportunities because of these assumptions. I worked hard, and was able to attend college out of state.
  The only thing that delayed early completion of my Bachelors, Masters etc was funding. I paid for my own college, and had to learn how to distance myself from negative people, people who had false intentions. I also had to learn to accept that no matter how many achievements I have under my belt, that the only persons approval that I should care about, is my own.

My future goals are to raise my children to be positive members of society (however they choose to go about that path, I will support.) I also want to get my PhD in Counseling or a PsyD in Clinical Psychology. I’d like to pick up a certification in Yoga, Play therapy, DBT, gestault, choice based therapy, Rogerian therapy, and art therapy. I want to open a holistic mental wellness center that guides people to developing the tools needed for life management.

I feel some disappointment in how the current mental wellness system is based. People go to a medical doctor to get medicine, their insurance (if they are lucky enough to have it) gives them a limited number of sessions and then they are cut loose. My thoughts are, if you have a diagnosis that will require you to go for medical checkups for the rest of your life (MH/MR, head injuries) why aren’t there providers who help you develop lifetime coping skills or activities to help you develop a support network??!!??

I was blessed that I developed my support network out of higher education. I have professors who are mentors, peers who are friends and encouragement to do better, to use what I have to be better rather than try to be something I am not.

If I can help just one person find the methaphorical “light”, as I have, then I will be successful.  So what if you’re “different”? Instead of accepting it as a negative, cultivate it into a positive. We use manure to nourish plants, that in turn nourish mankind; there is no logical reason why we have to accept that our “difference” is negative. It’s only negative if you label it, and accept the label. (labeling theory was created by Howard Becker.)

And thankfully, I have loving, loyal friends like Maxine who are there beside me to remind me to be helpful and not a steamroller (or hurricane.)

 

Maxine Owen: Rachel, thank you again for joining us here on my blog. It has been helpful to get some insight into the adult Aspie.

Rachel Kusama: I am flattered that you would want to interview me Maxine. I hope that whatever I said can help someone. However, I would like to encourage you to offer your insights on my youth since we spent so many hours together, even before we chose to. 😉

 

 

 

 

 

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Posted on June 7, 2012, in Uncategorized and tagged , , , , . Bookmark the permalink. 1 Comment.

  1. Thoughtful and enlightening interview, ladies. So glad you shared your views and experiences. Best to both of you.

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