13
Mar
09

autism and me

I am up, woke up in pain, so I wanted to write this blog I have been meaning to write for quite some time. I write about my abuse, my illness, now I want to write about autism and me. Autism is a HUGE part of who I am, how I interact with people, etc. So here we go. 🙂

AutismWhat is Autism?

Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. Autism is a spectrum disorder and it affects each individual differently and at varying degrees.

I was diagnosed with Autism at an early age. I was a very bright child, but I didn’t talk until I was a little over 3 years old. I didn’t interact like most babies do, things like that. Even though I didn’t interact well or talk I was playing piano at age 3 (not just banging the keys, I mean PLAYING), I was reading by the time I was 4, doing simple math at 5. I was always ahead of children my own age with things like that, but I was socially messed up, way behind my peers, I guess I still am. I remember “Dad” calling it the “stupid disease” *sigh*, I wasn’t stupid by any means, I am not stupid now. I like to say I am not defective, I am just different.  “Dad” liked to use it against me. I was awkward, clumsy, I pulled my hair, I hit my own head, bit myself and other things, so it was pretty easy for him to blame any “accidental” bruises in spots that could be seen on my Autism. 

Let’s get some facts about Autism:

People with Autism may have many of the traits listed below:

  1. Inappropriate laughing or giggling. (I have this, I laugh at times I should cry, cry when I should laugh and sometimes I get it right. I have had many people get mad at me because they think I am laughing at a tragedy, but I am not, I cannot help it.)
  2. No real fears or dangers. (I have a lot of fears, I think most were caused by my abuse, but as a kid I would do a lot of things not thinking of how it could hurt me. Hence lots of stitches, hurties and broken bones.)
  3. Apparent insensitivity to pain. (I think I have this to a degree, that is why I have a high pain tolerance.)
  4. Does not want hugs/cuddles, unless THEY want it. (I don’t like to be hugged if I don’t know you, or even if I do know you, some  times I just don’t want to be touched, it overloads my senses and freaks me out. If I want to be hugged and cuddled, I will let you know.)
  5. Sustained or unusual repetitive play. Uneven physical or verbal skills. (I do the sustained, repetitive thing some times.)
  6. May avoid eye contact. (This is very much me. I can’t look you in the eyes if I don’t know you very well and by very well I mean YEARS. Even then some days I have a problem with it. Not all autistic people have a problem with eye contact.)
  7. May prefer to be alone. (I like my alone time. I need to be alone a lot of the time. If I have the need to be alone and it gets disrupted by some one coming over or whatever, I get very agitated and sometimes I will take it out on the person who disturbed me.)
  8. Difficulty expressing wants or needs. (I have that to a degree. At home with friends and family I can tell you what I want or need, but if I am out I cannot. I can’t order in a restaurant by myself, I have to point to what I want and my family/friends know how I like my food cooked, so that is a good thing.)
  9. Inappropriate attachment to objects. (I don’t have this problem, thankfully. Or I don’t think I do. Family? Friends? What do you think?)
  10. Insistence on “sameness”.  (I do have this. I don’t like when things change around me, I get very upset and out of sorts. )
  11. Echoes words or phrases. (I used to do this a lot, “Dad” beat that one out of me, because he thought I was “mocking” him or others. *SIGH*)
  12. Inappropriate or no response to sound. (I have a REAL problem with very loud or sudden noises. It shocks my system and some really loud or shrill noises actually make me hurt physically.)
  13. Spins self or objects. (Luckily I don’t have this problem, I rock constantly though. It never stops.)
  14. Difficulty interacting with others. (I have this one in a big way. I have a lot of social difficulities. That is why I think I like the computer so much, I can interact much better with people on the computer.)
  15. Have problems understanding other people’s feelings or talking about their feelings. (Yes, I have this, I misinterpret people’s feelings ALL the time.)
  16. Appear to be unaware of other people talking to them, but will respond to other sounds. (Yes, I do this sometimes.)
  17. Unusual reactions to the way things feel, smell, taste, look, sound. (Oh boy do I have this in a big way. I have a big problem with textures, I don’t like to touch certain things and don’t want them touching me. I also have a problem with smells, and of course sounds.)
  18. Get overwhelmed with “chaos”, noise, crowds and overlapping voices. (Man, I do have this. I can’t take “chaos” around me, people talking all at once, lots of noise. I will simply get up, without a word and leave. A lot of people get offended when I do this, thinking I am rude, luckily my family understands.)
  19. Lining up things. (Yes, this is part of my Autism and my OCD haha.)
  20. Being in “a world of their own”. (Yes, I can tune out someone that is talking to me and go into my own world, inside my head and not hear a word that person is saying to me. I actually LOVE my world. I go there quite often every day.)

Ok those are most of the characteristics of Autism. I was diagnosed later on, around age 10 with Asperger’s. My mother and I were talking a couple of weeks ago and we think the doctors got it wrong. I have more traits of higher functioning Autism than I do Asperger’s. I really don’t know, but I DO know I am a proud Autistic!

Some facts about Autism:

  • 1 in 150 children born will have Autism
  • Somewhere around 1.5 million American’s are Autistic
  • Autism is the fastest growing developmental disability
  • Around 17% annual growth
  • The cost of Autism is about 90 billion dollars a year. They say by 2023 the cost will rise to 200-400 billion a year.
  • 90% of that cost is in adult services.
  • Costs of care can be greatly reduced with early diagnosis and intervention.

I am glad my mother found out early with mine. She was really an advocate for me in school and such. Back then teachers didn’t have the knowledge of Autism like they do now. I had a lot of problems in school. Teachers not “getting” me, I would get punished a lot for my rocking, they thought I was just being disruptive. I would get punished for walking out of the classroom if I got overwhelmed. My teachers didn’t get that I didn’t want to be touched, that it REALLY  hurt me and bothered me. If I tried to get up and walk away from a chaotic situation (the other kids talking over each other, playing too loud, etc.) I had a few teachers who would grab me and try to restrain me, which would always lead to me fighting them and getting violent. I was not violent AT ALL unless I was restrained like that. My mom was forever at school telling them “You can’t grab him, just let him walk out, he isn’t going to run away, he will probably stand out in the hall way or pace until he feels less overwhelmed, but he will come back.” Or, “He can’t help that he rocks constantly, he is not trying to disrupt the class or defy YOU telling him to stop, he simply can’t help it.” The kids of course thought I was “retarded” because I was quiet, shy, awkward, I rocked, I hit my head when I get overwhelmed or upset, I pull at my hair (I STILL do those things now). So I got made fun of a lot. School was just a rough time for me. I LOVED to learn and I made straight A’s in school, I just wanted to be left alone TO learn.

What is life like for an adult with Autism? 

I was blessed with a high IQ and being “high functioning”. On the low end of the spectrum some adults with autism need constant help with every day life. Myself, well I have every day battles with things you might find routine, such as:

  • I make lists for every day things to remind myself what to do. Like: “wake up, wash your face, brush your teeth, make coffee.” Lists in the kitchen include “Don’t forget to turn off the oven.” “The burner is hot don’t touch it.” “Wash the dishes.” Etc.
  • I have problems tying my shoes. I have to walk myself through it each time, I talk to myself — “Over, under, make a bow…” hah. I also get upset and frustrated if the bows aren’t equal or straight and I will undo it all and do it again. Things like that make life with me hard, because it can take me a long time to get ready and out the door.
  • As I said above, I have problems going out to eat, because I can’t order myself, I have to point and if no one is with me, I can’t tell them things like “How do you want your steak cooked?” Or “What kind of salad dressing would you like.” That is why I never go out to eat alone.
  • I am obsessed with things being lined up, if you move them, it bothers me and I get upset.
  • I make social “faux pas” all the time. I can’t predict what another person’s emotions, feelings and thoughts are.
  • I also forget things that are just “nice” things, like sometimes I will forget to knock on a door and just walk in, if some one says “How are you.” I can tell them how I am, but I forget to ask them the same. That offends people sometimes, but I REALLY don’t mean it. 😦
  • I’m VERY naive socially. It gets me into trouble because I am over trusting which can, of course, allow people to manipulate me easily.
  • People think I am “ignoring” them on purpose if I drift off into my “world”. It’s not that I am ignoring you, I am just getting overloaded.
  • I love sex (believe it or not after all my abuse), but I have a hard time letting my wife know I want it. In the past, it lead to partners thinking I was uninterested in them sexually.
  • I don’t get jokes, so don’t send them to me an email or an IM. It is futile, and wasting your time for sending it, and mine for trying to “get it”.
  • I take things literally, so be careful how you say things to me. Please.

Living with me is not easy I know. Living with an adult with Autism isn’t. We like structure, we like order, we don’t like change. Everyone Autistic is different, but it’s difficult nonetheless. I think it really takes someone special to marry and live with and love some one with Autism. If you are dating or married to someone with Autism, be prepared to change the way you think, it takes patience, but it can be done.

PossibilitiesI am going to close this by saying again, not ALL Autistic people are the same, that is why it’s a “spectrum” disorder. As far as I go, well you know now how I am by reading this post. I hope this has enlightened some of you and let you “in” on how it is to be me on a daily basis. I am NOT defective, I AM different. I honestly believe that if everyone in the world was Autistic this world would be a much better place, we wouldn’t be trillions of dollars in debt, we would be able to solve a lot of the problems going on in the world right now. I believe (and this is only what *I* think) that maybe the human mind is evolving and Autism is how we are “suppose” to be *shrugs* who knows, but I like to think that. I am proud of who I am, I get frustrated sure, I used to worry that I would “fuck something up” every time I went out in public, but now I just figure “fuck it” if you can’t “get me” then it’s your loss, move on and leave me alone. Stop staring at me in public while I am the supermarket, standing in an aisle wondering what flavor of j-ello I want this time, rocking slowly back and forth, talking to and answering myself. Don’t look at me like I am a menace to society if I get overwhelmed in a crowded, loud Wal-mart and rock a little faster and pat my head quickly over and over, I can’t HELP IT(Yes, I do get this still to this day)! Don’t call me crazy or whisper “retard” under your breath because I am DIFFERENT than you are (Yes, I get this too still now). My brain is just as good as yours and in some cases MUCH better. I have an IQ of 162,  I can play any musical instrument you lay before me, by ear. I can draw, paint, sculpt, woodwork. I am very creative and I am very happy.

Next time you see someone doing some of the things I described, just smile to yourself and know we are in our own little worlds and usually we are very happy.  If you know someone who is Autistic, then you know how loveable we can be and how great it is to know someone like me!

I’m out, thanks for reading!

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9 Responses to “autism and me”


  1. 1 butterflysblog
    March 13, 2009 at 7:59 am

    Hi V,

    I am very grateful that you posted about this. Since you were kind enough to share some details, perhaps you would be kind enough to answer some questions about specific aspects of Autism that I am curious about.

    1) “Echoes words or phrases”: Why does this happen? I mean, what is happening inside your head that forces the echolalia? What is the process that is happening inside that you are aware of that makes this happen? Is it a thought that says “Repeat the word” or is it a physical feeling?

    2)”Spins self or objects. (Luckily I don’t have this problem, I rock constantly though. It never stops.)” – Same question. What is happening that is propelling you to rock constantly?

    It is a rare and wonderful opportunity to be able to talk to a high functioning person living with autism, and I am so grateful to be able to talk to you about it.

    – Butterfly

  2. 2 D
    March 13, 2009 at 9:29 am

    Wow, boo, that has to be one of your best posts ever. I loved it. That was more than informative, it was personal and sweet as well. 🙂

    Having the honor to get to know you and your autism has completely changed my life, as you say up top. I have to say that I’ve loved every minute of it. I never wanted to seem patronizing when I’ve said so many times, “you are the most fascinating person I’ve ever known…” when I ask you to tell me one of your amazing stories. Sometimes you are shocked that I’m not bored…but I haven’t had one single moment of boredom since I’ve known you. I guess I was always concerned that you don’t think I think of you as a curiosity..but in truth, I’m continuously curious about you. You always enchant me, you always keep my interest. And it’s not only the fact that your true life stories are so interesting (albeit tragic)… it’s that you, the autistic genius is telling them to me. So, day by day for years now I get to hear the stories of your life as you’ve told them to no one else BUT I get to hear them filtered through your autism and that makes them all even MORE interesting.

    Yes, being married to someone with autism is life changing, but it’s for me. I’m happy to understand you. I’ve lived with the certain things you mention, and yes, I’ve come to understand that there are certain things you really can’t help. I wish people would understand that this isn’t some kind of excuse for ‘bad behavior’.. an autistic really has no idea that he/she’s doing something socially incorrect at certain times. How many times have I said to you, ‘ummm… don’t you even WANT to know how I am, today?’ And then you’ll go for a week or so, desperately trying to remember to say, “how are you?”, and knowing you, you probably write it in a list: ::Don’t forget to ask D how she is:: I know you! But after the week is over, you forget again, but you know what? I am fine with it. Because I KNOW you. I know autism. And what I get from you in your autistic mind is a kind of Love that a non autistic can’t give. Because… being loved by an autistic adult is the greatest gift in the world. So, it’s not just the way we perceive you and sum you up, but it’s also what you GIVE, that rarest of flowers… the love of an autistic man for his woman.

    And speaking of sex… (busts out in laughter) I KNOW you desire me!!! What makes me laugh is that you think I don’t know but in truth you let me know MORE than you actually think you do, which in your head probably means you want it a WHOLE LOT MORE than you think you’re letting me know!!! And I love that. Without going into ANY detail, I can tell you that making love to you, my autistic spouse, has allowed us to reach planes of sexual existence that I believe NO ONE has ever known… I’m thankful for autism, your wild mind, your super shyness, and for the voracious sexual appetite you reveal… once tapped properly!

    I also find it charming that you separate your food by size, color and you don’t let certain things touch. I get the biggest kick out of your combinations and what and what you WON’T eat. To me, this is the stuff that makes life INTERESTING.

    I also love that you rock, head hit and nag at your hems.. it makes you different and unique and I LOVE it. I love that MY MAN is the one who isn’t cut from a cookie cutter. I love that MY MAN is the beautiful goth skinny pretty boy who can’t look anyone in the eye and talks/answers to himself in the jell-o aisle at walmart. I love that MY MAN is the one who freaks out when overwhelmed. I couldn’t be with anyone BUT you… I LOVE your differences…

    I LOVE your mind. 🙂

    I also love that little AUTISM poster up top. GREAT!!!

    I love you. As you are. Forever. YAY YOU!!!

  3. 3 cleverem
    March 14, 2009 at 5:29 pm

    What a terrific post, I learned so much! My daughter who is almost 3 met an autistic girl at the park. She was doing many of the things you mentioned, the rocking, the inability to meet a gaze, the repeating. But she was the sweetest most lovely child. She looked about ten years old but was very happy to play with my toddler. She was gentle with her and kind and loving. Sometimes she would retreat into her own world, but then she would return all full of smiles. And my daughter saw nothing but another unique person. We are all the same and we are all different. There is not one thing defective about you V. You are perfect just as you are.

    Maybe if I were perfect I would figure out how to bold or make this font bigger! LOL.

  4. 4 mile191
    March 16, 2009 at 2:30 am

    hey. it has been too long since i came by. i have not been in a very good place, and trying to hide it from everyone. i love your post here. the honesty, the raw real you. thanks for writing something so inspiring, and helping others to understand better autism. Good for you, to work so hard to understand yourself. i hope you are having better days. thanks for reading me. safe hugs♥


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