Archive | March 2012

Disorder?

Those with Down Syndrome look different. You can tell by looking at them that they have a mental disability. Those with low-functioning autism look different. You can tell by looking at them that they have a mental disability. Most of those with Asperger Syndrome don’t really look different. You can’t tell by looking at them that they have a mental disability.

I was informed that there is a possibility that AS may not be in the next edition of the DSM (Diagnostic and Statistical Manual of Mental Disorders) So, the question at hand should be answered. That question is: “Is AS really a disability that needs to be addressed in the DSM?”

Yes. AS is a mental disability. In most cases, it’s not severe enough to hinder a productive, independant life. Is it severe enough to be in the DSM? Yes. Life is difficult enough with being diagnosed. How much more difficult would it be if there was no diagnosis? After having been diagnosed, my parents and I dealt with things differently. Everything changed after that. We discovered that I need to learn social things like I would a different language. Textbook learning. I need to hear it, read it, and practice it. We wouldn’t have been able to make the right adjustments and make life easier for all of us if AS hadn’t been in the DSM and hadn’t been a known mental disability.

I look back and remember what life was like before being diagnosed and I never want to go back. I don’t want to go back to the confusion, the anger, and the chaos. I don’t want to go back to having very few friends and many issues. I don’t want to go back to constant meltdowns. I don’t want people in the future to have to go through what I did because they don’t know about the existence if AS.

The answer: “Yes. Asperger Syndrome definitely should be included in the next edition of the DSM.

Opinionated,
Allie.

This entry was posted on March 26, 2012. 2 Comments

Prevention of Meltdowns

Meltdowns are the number one behavior issue amongst those with Asperger Syndrome. Avoiding them is hard to do. The littlest thing can set someone off, but recognizing the signs early can minimize a meltdown.

Trips to Bible studies have become something that my “brothers” and I have made a regular thing. This causes some strain for me. The new surroundings, the new people, and new worship songs all make me nervous and more susceptible to a meltdown. There were several points on Friday night where I could have had a meltdown, but I did not.

Friday morning, unlike my normal schedule, I stayed home in the morning and worked the afternoon shift instead. Going away from my normal schedule kind of messed up my day. My eating pattern was off and it put my senses on edge. I asked my mom to brush my hair and avoided a meltdown by doing something I know calms me.

We left late for the Bible study and I was hungry. I dislike being late with a passion. Why set a time to leave if you’re not going to leave at that time? While sitting in the car waiting, I was almost in tears. I asked to pick up something to eat and avoided a meltdown by filling my stomach.

At the Bible study, while in an already stressed state, I had a cup of tea in my hand while talking to someone. One of my “brothers” came up behind and shook my shoulders while encouraging me to be more social. A little bit of the tea splashed onto my hand. I lashed out at him just a bit, then I excused myself to the bathroom to clean my hand and take some deep breaths. I avoided a meltdown by pulling myself away from the situation and giving my senses a change to calm down.

Meltdowns can be caused by simple things, but they can be avoided. Eating, reading, singing, and brushing hair will not work for everyone. Those are simply specific to me. Find what calms you, separate yourself from the situation, and do that until you feel comfortable again. I always carry a small brush and a book with me, just in case. People would much rather I excuse myself for ten or fifteen minutes than freak out and blow up at them. Preventing meltdowns isn’t a skill you perfect overnight. It takes time and practice, but you can do it. I’ve gotten better over the years and, Friday night, avoided several meltdowns in one day. You can too.

Getting Better,
Allie.

Awareness

Sunday evening, I had the opportunity to go to a bible study for young adults. While there, I met several people, but one stands out among them. While speaking with this person, I was reminded of how little people know about high-functioning forms of autism.

I was quiet, as is normal for me when in a new surrounding with many new people, until I met Stafford and the whole evening turned around for me. I was able to talk to him comfortably about many topics (Star Wars, Star Trek, church, our ministries, family, disabilities, etc.). After speaking with him and becoming comfortable, I was better able to talk to other people and get to know them without feeling out of place and awkward.

Stafford and I have a few things in common. We both have what is considered a disability; he’s Bi-Polar type one and I have Asperger Syndrome. We live our lives to the fullest despite these disabilities; he has a wife and a little one (with one on the way) and I have a job and live life happily. We both believe these things to be tools of ministry; both he and I can reach people like us that might otherwise be untouched. We both are open and unashamed of sharing what we’ve experienced; his experiences with Bi-Polar type one and my experience with AS.

In my conversation with him, he was amazed with how open I was about my AS, how willing I was to talk about it, explain it, and answer questions. I realized that not many people know about high-functioning forms of autism because not many of us with them are open to questions and willing to talk about it. When you hear people talk about high-functioning autism (HFA) or AS, it’s a parent explaining their child’s strange behavior or a professional that doesn’t actually have HFA-AS. It’s a bit of a taboo subject for a lot of us. Maybe it’s because of the fear of being labeled a “freak” and rejected because of it. Maybe it’s because some of us are ashamed of being so very different from everyone else. Maybe it’s because some of us would just prefer to not talk at all. Everyone that doesn’t talk about it has a reason. Not all of them are the same, but I will not give myself a reason to be quiet about it. I want people to hear about it on the News and on TV shows. I want to, metaphorically, knock on the general public’s door and let them know about it. How many children will remain un-diagnosed and without help for their HFA-AS specific problems because not enough people know about HFA-AS?

I’m doing what I can to spread awareness. I hope to do more in the future. I hope that the question and answer post I’m working on will help to spread more awareness. What can you do to help?

Always,
Allie.

Anger

I am privy to discussions on topics throughout the week on Facebook that revolve around Asperger Syndrome. On Thursday, the topic was: “Have you ever been made to feel angry about NTs? What has caused this and do you think you could ever move on?” While I did comment with my own opinion on the matter, for the most part, I observed. And some of what I observed scared me. I saw such anger and bitterness towards “normal” people coming from Aspies. I’m not sure that I can even do the best job possible of writing this while so charged with emotion.

What I can say about how I feel on this topic is this: AS being part of who I am, their non-acceptance used to upset me. It makes me sad, not angry. Someone once asked “Can I slap the person that diagnosed you? I think you’re perfect.” Experiencing AS is part of what makes me who I am. Not all my friends, but some just won’t accept that; while there are set backs, there are also wonderful things about AS. Yes. I’m still friends with them and still love them, regardless of their varying degrees of acceptance. It’s hard though, because I want to share the wonderful parts of AS with them and are unable to because some reject AS as a whole. Most of my friends that know about it come to an understanding. They look back on the years that they’ve known me and they realize that it explains some of my stranger behavior. And they are fine with AS. They were my friends before they knew and they are still my friends now. Nothing has changed except that a door of understanding has been opened to them. I only know a very small number of people that reject it, and that’s fine with me. I know that there will always be the people that will not understand it, and that’s ok too.

In this online discussion, there was talk, from one person in particular, that came close to Hitler’s idea of weeding out all other races and only having one type of person left. This person gave the idea of an “Aspergian” community where only those with AS were welcomed and we would “defend ourselves and hold our ground and form a protective bloc(k) to shield us from this alien presence that is the NT.” I was appalled that anyone would even suggest a community in which my family, who are NT’s, would be unwelcomed and treated horribly simply because they were born NT. It would be like NT people deciding that all Aspies need to be shipped off somewhere, made sterile, and institutionalized. I love my family with all my heart. I can only say that I know 4 or 5 Aspies personally. I’ve never met any other Aspies in person. A good 99% of the people I know and care about are NT. Even if such a place existed, I would not go there.

It scared me to find that someone could let their bitterness get that serious. It scared me to find that someone could feel hate for those that he’d never met simply because they are different. Didn’t that exact same thing happen to him? Didn’t he feel rejected and mistreated? He wasn’t like them. He was different. If anything, he should not even think of doing to others what has hurt him the most. I do not agree in the least bit with what he said. Because of his AS, I’m sure that he’s intelligent and has many talents. I feel sorry for the NT people around him because they may never get to know how his different mind thinks, what a good friend he may make, what talents he has, or how he could possibly make their lives better. I feel sorry for him because he may never know a true friend in a NT or see life from a different point of view, a NT point of view. I guess there are those in both worlds that are intolerant of others. I am definitely glad to have experienced that there are people of compassion in both worlds.

Sincerely,
Allie.

Questions?

Recently, my family rented a movie, Temple Grandin, and for the first time, my little sisters expressed an interest in Autism. When watching this movie, my sister’s asked questions like: “Do you see things that way?” and “Allison, do you feel like that sometimes. They made comments like: “You’re not that bad.”, “I can see how you act like that sometimes.”, and “Allison, you’re the opposite of that.” I sat there trying to explain the differences between myself and Dr. Temple Grandin.

(Dr. Temple Grandin:
On top of writing articles on livestock handling, changing the world of cattle ranching, and receiving a PhD, she also changed the world of autism forever.
BA: Psychology at Franklin Pierce College, Masters: Animal Science at Arizona State University, and PhD: Animal Science at University of Illinois at Urbarra-Champaign.
Publications:
• Emergence: Labeled Autistic
• The Learning Style of People With Autism: An Autobiography
• Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism
• Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior
• The unwritten Rules of social Relationships: Decoding Social Mysteries Through the Unique Perspective of Autism
• The Way I See it: A Personal Look at Autism and Asperger Syndrome
• Animals Make us Human: Creating the Best Life for Animals)

High-Functioning Autism (HFA) and Asperger Syndrome (AS), though very similar, are considered different disorders. I have AS and Dr. Grandin has HFA. Because of similarities, people with HFA and people with AS are often grouped together and dealt with in similar manners. The high-functioning autism spectrum disorders include:
High-functioning autism: The child fits the definition of autism but has normal cognitive and learning abilities. The child may initially have had difficulty acquiring language, but eventually was able to speak at a level close to what is expected for his or her age.
Asperger syndrome: The child is similar to those with high-functioning autism, but has fewer symptoms and had little or no difficulty developing language

My family, including my sisters, has known about my AS for years, but I don’t think that my sisters realized just how big the world of HFA-AS is. It’s more than “Oh, Allison just acts that way because of her AS.” Since my little sisters, one 15 year old and two 13 year olds, had questions for me, I figured that their questions are similar to what other people ask when they are first really learning about what HFA-AS is like.
So, this post is my way of asking my readers to comment with any questions they have below or e-mail their questions to me at allie_shrimp_000@yahoo.com. I will use your questions to do a Q&A post. Thank you so much for your support.

Always,
Allie.

Guest Writer: Zero-Ai Senshi

A friend that I grew up with, before I moved, has Asperger Syndrome. I recently found this out. I asked him if he would write something for me, since he’s had help from professionals and I’ve had my family and friends helping me. I figured that his experiences would benefit others in ways that my experiences can’t. He’s written this for you, and I think he did a wonderful job.

Always,
Allie.

My name is Dylan, and I am diagnosed with Aspergers syndrome. I’ve known Allie for many years, and I was rather honored to be asked to make a post on her Blog to talk about my experiences living with Aspergers.
I was diagnosed around 4th grade with Aspergers syndrome, and since then I have received counseling through one on one counseling sessions and behavioral groups. This has helped me with a lot of my initial problems I have faced throughout my life, mostly the ones dealing with coping skills and proper communication skills. One thing that many psychiatrists have said about people with Aspergers is that they have a lack of empathy and show little emotion. I have found that I have almost too much empathy. I almost think of myself as a Newtype from the Gundam anime franchise, but I digress.

Throughout my life since my initial diagnosis, I have had to deal with many emotionally scarring problems, such as the divorce of my parents. I was bombarded with sentiment from both sides as they fought about what was best for us. It was and still is something that I have to deal. Another problem I had to deal with was the cultural shock of moving to Hawaii. Now, I know what you all are thinking: “Hawaii? That’s paradise! How could that possibly be emotionally scarring?” Racism and drug culture. In Hawaii, many of the locals are addicted to many harmful substances, such as marijuana, ecstasy, alcohol, crystal meth, etc. This has caused many of the locals to join different gangs and commit various crimes outside of just having those substances in general. I have literally had friends beaten to death because some local got drunk, crashed a party, and decided based on the fact that they are a bit different, that they deserved to die. These actions personify the other problem with a lot of the local culture in Hawaii: Many of the locals are racist against white people. Now granted, it is true that people of white descent were the cause of the fall of the Hawaiian kingdom, but that ultimately doesn’t warrant much of the hate that the people have towards the whites on the islands. I have been mugged and harassed on many occasions just because I’m white (although I am actually part Hawaiian and part Chinese, but as if they cared). This coupled with the divorce led to probably the most depressing period of my lifetime.

It was at this time that I really got a lot of the counseling work done on me that needed to happen. Had it not been for the care of my school 504 counselor, Mrs. Svenson, and the school behavioral specialist, Mrs. Dibiase, I wouldn’t have made it through all of the constant verbal and physical abuse from my peers. The other person that really helped me was a man by the name of Clyde Uyehara. Mr. Uyehara was the band instructor, and boy did he teach me the meaning of what it means to live life. Mr. Uyehara told all of us to live life to the fullest, and that “talk is cheap.” When we said we were going to do something together as a band, come hell or high water, we did it. Being in band gave me many opportunities. It allowed me to go to California to tour 4 colleges, go to Disneyland, and play with the Aliso Niguel High School band in the Laguna Beach area. Being in band also gave me the opportunity to play a gig with prominent Hawaiian musician, Uluwehi Guerrero. Ultimately, music became my antidepressant, and band kept me from wanting to give up on living.

So in the coming years from learning to deal with being socially awkward and my social problems, I have done a lot with myself. Despite being the most antisocial person back in those days, I went on to become Student Body Business Manager 1 year after I moved back to Washington; imagine that. I have also gained a lot of charisma and learned to love people in spite of whatever their flaws may be. Normally people with Aspergers are speculated to have little chance of having these social successes. In response, I say whoever came up with those statistics should really try talking to one of us and learn what it is really like to live with Aspergers.

Now in closing, many of you might be wondering the significance of the title of this entry. For starters, Zero was my nickname for a while when I was living in Hawaii. I still hold that name and all it represents close to my heart considering all I learned in the time that I went by Zero. As for Ai Senshi, that is Japanese for “Soldier(s) of Sorrow”, and the name of one of my favorite songs from Mobile Suit Gundam. I gave myself that title during senior year of High School, not because I am a sorrowful person, but because I am willing to embrace my sorrows and continue on living in spite of whatever sorrows come my way. I will continue to live my life in spite of whatever may want to stop me, because the best is yet to come.

Towards the unknown,

Dylan.

PS: Thanks Allison for giving me an opportunity to tell a bit of my story of living with Aspergers. I hope to see you sometime in the future.

P.S. It was my pleasure entirely to give you this opportunity. I hope we see each other again too. I hope that you write for us again some time. 😀

Past Meltdowns

I was going through my writing from years ago (once again) and found something I wrote about a meltdown I had had (among other things that were going on). It’s a little confusing, even to me. I wrote it to my teacher in one of the “Daily Writes” she had us do. It’s a bunch of different issues all put onto paper. Here goes:

Monday, March 30, 2009
For once, I actually have nothing exciting to tell you. The past few weeks have gone by so quick and they all seemed normal. Normal, boring, bland. However, for some reason, my irritability has become sensitive and touchy. I try to control it as best as I can, but it’s hard when I have two 10 year old sisters. They’ve been having friends over more often. Yesterday, one of the twins really got to me. I kinda went off by myself and broke down. It felt like everything, every itty-bitty irritation and problem had piled up and it was let loose at this moment. It felt good to cry. I don’t know what’s wrong with me. Later on in the day, the children’s church pastor asked me why I was cleaning the church’s kitchen by myself and doing all the work (even though someone was supposed to be helping me). It felt good to know that at least one person realized how much of the work I was doing. I sorta feel like there is this great weight on my shoulders. It hurts my back, but can I live without it? Doing all that cleaning makes me feel needed. If I wasn’t cleaning, would they even need me anymore? My mom say’s I have the heart of a hostess. Is that why I have a need to be needed and to please people? Making people happy lifts my spirits. When I cook and serve people, it gives me a sense of purpose.

At the time that I wrote this, I didn’t know that it was an Aspie meltdown that I was describing. I expressed the feeling of wanting to be needed. I hadn’t found my place and purpose yet. It was a difficult time. I was still frustrated and didn’t understand why I acted the way I did or why I felt the way I did.
Now, I can look at my behavior and analyze it. It’s been a long, hard road to be on, but I’ve made it this far. Now, I know what my purpose is. I know where I belong. Your road, however long it may be, can be conquered. Look at how far I’ve come. You can make it there and farther.

Moving Forward,
Allie.