6 months since my life changed forever - the overview

This is a re-post from my blog on the Wrong Planet forums. I thought it should be on here too. Some of this content is a bit repetitive from my other posts, but it's kind of a summary of my life these past 6 months. 

Yup. June 30, 2010 was when I went into the Psychological Services center at Colorado State University for the evaluation to determine whether I had Aspergers Syndrome or not. In May on Memorial Day, three friends from church - two Human Development and Family Studies (HDFS) graduates like me, and one licensed middle school teacher, sat me down and told me that they had been noticing social quirks and how I still talked about HDFS intensely even though I had graduated a year ago. They suspected that I had Aspergers syndrome, even though I studied parent-child attachment and had accurately observed interactions. Yet, I wondered if they were right because though I could observe interactions, I had trouble in actual social situations with a lot of people or if I was already stressed out. Throughout my life, I had always had special-interests. Even in my classes, when we'd talk about autism spectrum disorders (ASD), I could relate in part when I reflected back on my childhood. However, I thought it was because I had learned how to interact late in life due to being adopted at age two after being in an orphanage and after chronic malnourishment and infections. I thought somehow the environmental factors in my early development were the causes of my childhood issues.


The day before I went into the evaluator's office, I went into the Animal Sciences building. This was the building where Dr. Temple Grandin worked. I stood in the lobby and thought. Sometimes I would go in there to write my thoughts about whether I had an ASD or not. Other times, I would sit on the stone benches in the courtyard because I didn't want to spend too much time in the building in case I did actually run into Dr. Grandin. I wouldn't have known what to say or how to explain why I was there.

I found her work about a week after the "I think you might have Aspergers Syndrome" conversation. The first thing that popped into my head was, "SHE WRITES IN APA STYLE!!!!! HOW COOL IS THAT!?!?!?!!?!?!?!!?!?!?!?!?!?!?!?!?!?!?!?!" Right then, we had a nerdy connection because I wrote my thesis and all my papers in APA. It's required for my field. Anyway, that was comforting, yes, in a nerdy sort of way!!! That started my fixation. I knew after the second day of looking up more of her articles and then sitting outside the Animal Science building writing about her work that this would be a fixation. "Yeah, Katie, face it. You probably do have Aspergers. Wait - she had full-blown (classic) autism! She can do it!!! So can you even if you have this thing!!!" That thought, second to Christ, was my anchor. Her life was my anchor. There, I said it! Even though I'd sit there and cry worried about my future or if I was re-experiencing the pain in my past just thinking about it, knowing she got through life somehow helped me. God used her life to remind me that everyone - no matter their talents and abilities - has a purpose in His plan.

Thinking about my past and going back through my past hurt a lot. Like I said, I was adopted, but my arrival with my medical problems and need for intensive intervention plus a very dismal prognosis (severe brain damage) at my initial evaluation really traumatized my mom. That and other things influenced how I grew up. I had pain in my childhood from that, and I felt I could never reach normal because of my fixations and social awkwardness. I wanted those to go away so Mom could finally have a perfect child, but I didn't know how to make them go away, or how to stop my brain from going into fixations. I would get yelled at eventually when my mother would get sick of me beating a subject to death, and that stopped a fixation only until another took its place. Until then, I didn't want to be me. Once in 11th grade, I wondered what it would be like to suddenly step foot into my life right then: retain all the academic learning and basic biographical information of myself but loose all the emotional pain of myself? What if somehow I could push the reset button in my life-history? I wanted to.

All this crossed my mind when I walked into the CSU evaluator's office. Luckily one of my friends from the trio that talked to me on Memorial Day came with me. I was nervous. Super-nervous. I was about ready to have my brain spilled out on the table (figuratively) for someone else to sort through to see what was wrong with it. Being an HDFS graduate, I knew what she could find. That made it worse. And knowing I had to talk about my past made me hurt even before I said anything.

I made it through the diagnostic interview. I also made it through half a box of kleenex and probably put indentations in the carpet from my evaluator's rocking chair. Yes, I knew it was a stim, but I couldn't help it. YOU'RE PULLING APART MY BRAIN, what do you expect!?!!?!?!?! One highlight of the meeting was that when I told her that I was pretty sure I was fixated on Temple Grandin, she told me that she had met her. I was like, "COOL!!! TELL TELL!" And my evaluator gave me the cliff-notes version of how Dr. Grandin talked to some of the staff just about autism and stuff by giving one of her standard lectures. That kinda made me smile. The suggestion that I should meet Dr. Grandin made me eek (haha, more on THAT later ;) ;) )

I was calmer later when I had to do the actual ADOS. It wasn't as bad as I thought. The evaluator seemed to think the same thing. Then came the two weeks of waiting for the results. That was not so fun. WHAT!?!?! I seriously spilled my BRAIN and now I have to wait two weeks for you to sort through it!?!?! Welcome to the world of psychological evaluation, especially for complicated clients like myself.

So, two weeks came and went. THEN came the results

Congratulations, you have PPD-NOS - Pervasive Developmental Disorder - Not otherwise specified. You have a speech delay which puts you out of the Asperger's camp, but you're not as impaired in some areas as people with classic autism. However, you almost almost almost almost came close to getting a classic autism diagnosis (high functioning). This means you and Dr. Grandin almost almost almost were DIAGNOSIS TWINS!!! (except for being like a billion years apart in age, obviously)

What!?!?!? 

Weird??
Ok!
Cool!
Wait.... what?
Oh ok.... Whelp, that explains a lot!

Where did I go from there? Well, the day AFTER I got my diagnosis results, I went into the Animal Science building again. I was sort of re-creating the 'going through doors as symbols of transitions' thing that Dr. Grandin wrote about. Walking up the steps felt different. I was effectively saying, "Well, I admit it. It's official. I'm like you, Dr. Grandin. I'm on the autism spectrum. Here I am. I've seen your life unfold through your writings and lectures. Now I am trusting God with my life. I know He has a plan for it, because He had a plan for yours." It felt weird. Somewhat foreboding making that physical manifestation of accepting my diagnosis. The door had closed on me ever being 'normal.'

But that was liberating too!! An odd side-effect of this whole diagnosis process was that I didn't stress about getting married. That whole stress of getting married was because I wondered: "When would I be like most girls my age? When will I become a mature Christian woman?" I thought marriage was a developmental milestone to mark those two things. But now, knowing I wasn't normal, I didn't have to strive for developmental milestones. God might have another plan. Dr. Grandin admitted she didn't want to get married because it was emotionally complicated and she knows she can't do emotionally complicated stuff. So she just does AMAZING research instead!!!! Suddenly I realized, "That's not such a bad idea for my life!!!!!!!!!!!" Pressure to get married started to come off from me and that was pretty great :D :D :D It's helped me focus on what God wants me to do NOW to reach people, to grow, to serve in the church, and to reach the next generation (via Sunday school teaching for me). I don't have to wait for a magical diamond ring to do it. I just do it in the unique way God wants me to!

Since I wasn't stressing so much about marriage, I could finally FINALLY seriously bounce around the PhD or not to PhD question. And no, not just because Temple Grandin eventually got a PhD. My HDFS friends had been asking if I would continue doing research even before I graduated. I admit, the whole, "What if I get married, would a PhD be worth it?" was a larger factor than I had thought. So, yeah!!!! I'm thinking about eventually PhD-ing it!!! Just have to get some street cred (work experience) first!!!!! And pay off student loans. And then convince my mom that it's still a good idea for me to go back to school, if that's what I'm supposed to do.

I work in a group-home now, and I think I'm more patient with my clients because I know that they'll never be normal. I keep their behavior goals in mind, but I don't hold them to 'normal people' standards of behavior. They won't ever be normal, so why push it with them? I just help them grow in their areas of behavior that they need growing in, otherwise, we just chill. Sometimes I joke with them like, "Yeah, I'm not normal too, so I know." Learning about my own sensory issues has really helped me support one of my clients who also has sensory issues.

Over these past six months, I've had to look at my past again. During the diagnostic interview, I realized just how much pain my past had caused me. It was tempting just to focus on learning about Temple Grandin's life, but I would make myself stop and line her life up against mine. When something bothered me such as: Why did she get a full-time decently-understanding nanny and I got a traumatized parent?? God would help me think about my past differently. No, I didn't get a full-time nanny, but I had amazing teachers that spent about the same amount of hours with me as Temple's nanny did with her. Realizing this, and realizing that God did get me through the pain helped heal me. Her life was a starting point that God used to really heal me from the pain in my past. This healing isn't done, but when I look at where I was six months ago, it's amazing! I think learning to accept myself the way God made me, and learning to accept my developmental history was huge. Knowing that He did allow for me to have a lot of teachers and outside influences that were very highly adaptive shows His hand in my development. That has been such a great comfort!!

And last but not least, if I hadn't gone to get evaluated for an autism spectrum disorder, I probably would've never attended a lecture by Temple Grandin on September 20 at the CSU University Center for the Arts with a friend of mine who was an equine science major :) :) :) :) :) :) :) :) :) :) :) :) :) :) That's right!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We went together because I was still embarrassed that I had a fixation on Dr. Grandin the way NT people get 'typically' obsessed with celeberties. So, I didn't want to go alone. Each to his own, right ;) The lecture was pretty awesome!! I did a mixture of eeking and crying in a good way when she walked on stage. Everyone was cheering loudly anyway, so it wasn't like that was noticeable, but yeah.

I knew most of the content from reading her articles & some of her books. But it was nice to see everything woven together in about a 50 minute lecture. The professor side of her totally came out when she started the Q & A by saying, "Now it's your turn to ask questions, and if no one comes up, I'll start calling on people." I laughed SO HARD!!!!!!!!!! Then I got to ask her a question!!!!!!!!!!!! I was SO SCARED but EXCITED too :D My dear friend came with me down to the mic and that one malfunctioned two people ahead of me. I thought, "SUPER-DANG!!!" but the tech people were like, "Use the one in front." since we were in the middle of the auditorium. I was thinking What!?!?!?! You mean the one right in front of her lecturn!?!?!?!?!?!?!?!?!?! That's right. That one. I looked at my friend like, "You are SO COMING WITH ME, RIGHT!?!?!?!" My friend totally had my back. Totally!!!! She came with me to the front and gave me a comforting smile before adjusting the microphone down to my little height.

I had to concentrate SO HARD just to make eye-contact and not just read off the paper that I had written my question down which was: "considering the cognitive differences and sensory issues people on the autism spectrum face, how would you help a child on the autism spectrum deal with something traumatic?" I looked up and my brain was like, "AAAAAAAH! I'M ACTUALLY LOOKING AT HER!!!" But I kept my cool :D Her response was, "Well, I broke myself once." Ok, she didn't actually say that, but she told me about a time when she broke a bone but was fine. Then I said, "What about if it's psychological trauma like PTSD?" And she said to remember that it affects each person individually, like several soldiers can see the same things and some could be fine and some wouldn't. I thanked her and went back to my seat with my friend. YE-AH!!!!!!!!!!!!!!!!!!!!!!!!!! I also gave my friend a GIAN HUG after the lecture as a thanks for moral support during the Q & A & just being willing to be very nerdy with me! She told me that the lecture helped her work better with her horse, so both of us benefited :) Let's just say that after the lecture, I was giggly for a week!! No joke!

Other than just eeking about meeting Dr. Grandin, I've began to pray that she knows God better if she doesn't already. Over these past six months, I see how God has helped me walk through life now knowing that I'm on the autism spectrum. He's shown me that He has been there in my past and has a plan for my future. This gives me hope that goes deeper than if I was just learning about the latest interventions. I can connect with God in my unique way because He allowed my brain to be the way it is. This is a big comfort, and I pray that she finds this comfort for her life as well.