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What It Was Like To Be Autistic

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Today I am taking a break from writing so someone else…a very important someone else, in my opinion…can take the reins and post to our blog. That someone? My son, Kyle.

Kyle shares with us, in his own words, what it was like to be autistic:


My earliest memories of being autistic were building forts out of giant blocks, spinning sticks that magically turned into airplane propellers, and hiding under blankets pretending that I was in a cave or surviving a blizzard. The reason why I did these things is because people said I was autistic and I was scared to talk to people. Spinning sticks was just me. I loved to do these things-- it was my way of expressing myself in my own language.

I didn’t trust people really. I was scared they would be not nice, so to protect myself, I would not socialize. I would psych myself out by not being sure how they’d react. I thought they wouldn’t understand what I was trying to say, wouldn’t understand what I meant.

With all the weird stuff I did, the response from other kids was not positive. I believed everyone would think I was weird because I would line things up and stack blocks, spin sticks, speak out stories playing in my head, pull pillows over my head and roll up in blankets like a cocoon, obsess about cool stuff, make sound effects, spin with dolls.

When I would visualize something interesting in my head, I would block out other things—I wanted to keep working it out in my head—cool stuff—and not pay attention to other people while I was doing that.

Even today, I am terrified to call people. I get really nervous about their reaction. I still like to line up and stack blocks to relax, and spin my pencil when I’m thinking, and work things out in my head for a long time.

Kyle Westphal

 

Posted by Jen Westphal at 06/11/2009 08:04:30 PM | 


Kyle and Jen,
My son was just diagnosed with aspergers and what you just wrote about is exactly what my son is doing. I had no idea that is why he was doing these things. In your opinion, what can I do as a mom to help my son not feel afraid?What can I do to make him act in a more acceptable way in social situations? What would have made things easier for you to try to meet new people? Is it better to tell everyone why my son is not like them or is it better to not say anything and let him learn? My son is 8 years old and struggles with the same things you are talking about plus some other things. Any advise from you would be wonderful. Your blog really helped me to understand some things that my son does on a regular basis and I had no idea why.I thought he was doing it to get attention,but when he got the attention he would become angry.
Thank you for opening up and letting everyone know some of the why behind this!
Posted by: Amanda ( Email: ) at 6/12/2009 8:39 PM


Thank you Kyle, for posting this. I just had a row with my son who liked to burp. He deliberately swallows air in order to burp very loudly. The problem is he usually gets stomachache and vomits after a while. So, after the n hundredth reminder, I blew up. I just couldn't understand why he'd still do it again, even after vomiting.
Then I turned on computer, read your post and felt relieved. It's so refreshing to hear the other side of a story, after listening to endless assumptions and judgments from experts or all non-autistic people.
I watched your journey from the DVD sent by Autism Treatment Center of America. I thought you were like Raun, so talkative and social. But after reading your article, I finally realize that everyone is different, and recovering from Autism doesn't mean everyone becomes like Raun.
Your accomplishment in connecting, interacting and communicating with people has a profound effect on me. You give me hope and motivate me to want to help my son even more. Thank you Kyle!
Lucy
Posted by: Lucy ( Email: ) at 6/14/2009 9:50 PM


Kyle,
I really appreciate your explanation about growing up autistic. I have worked with many autistic children and have often wondered what they were thinking while spinning objects. Was it that they liked the way it looked while moving? Were these children creating scenes in their head and acting out some kind of "script"? You gave me some welcome insight in to your world.
Thank you.
Posted by: Louise Sattler ( Email: | Visit ) at 6/15/2009 11:53 AM


Thank you Kyle for give me hope to wait for the day my little child say the same words to me. You and your familiy taugh me to understand my children. Since long time ago, I stop calling them "autistic" and now I call them "Normal Hidden".
God bless you all.

Alirio.
Posted by: Alirio Arévalo ( Email: ) at 6/15/2009 8:07 PM


Wow I am new to this. My 8 year old is just in the beginning of learning that he has asbergers syndrome. I hope to one day have more understanding to why he does the things that he does but reading your story has help very much.It has giving me hope for my son and my family.
God Bless You and Your Family,
Mary Blackstone
Posted by: mightymouse642 ( Email: ) at 6/16/2009 8:35 PM


Thankyou Kyle for sharing your thoughts and your feelings. It really takes a "big" person, to express their feelings the way you have on the computer. You should be very proud of yourself for not just sharing with others, but, also for helping others understand. My son is also autistic and sometimes i wonder what's going through his mind, as he is non verbal. After reading your thoughts, i think i can understand him better. Thankyou again and take care.
Posted by: sandy ( Email: ) at 6/19/2009 9:24 PM


Thank you Kyle for the excellent letter. My grandson has made such progress and he is now 6;however he reads like he was 10 and lately I noticed he uses words out of the blue. Now I understand that he knows what he is talking about because he is hearing it in his head. God Bless you and your family. Keep on working and knowing nobody will hurt you if you believe.
Posted by: mary ann ( Email: ) at 6/21/2009 8:34 PM


Thank you Kyle, for your thoughts it helps to udertand my five years old child Titas. We live far far away from USA, in Lithuania. I've told about your story to many families with similar problems, it gives us a hope! All the best to you and your wonerful family!!!!!!!!!!!!!
Posted by: ritatitas ( Email: ) at 6/22/2009 1:24 PM


Kyle,
Thank you for writing. That is the burning question for many parents "what is going on inside my child mind. I have a young child just diagnosed (2 year old). Even though some of his behaviors are considered "odd" or different, I think they are pretty okay and not so "odd" at all. Your story puts me at ease to know that maybe my son is just doing some things that he thinks are cool or interesting. I'm so glad you were able to recover and I believe that is were we are headed also.
Much love and God bless you for being able to share your story with the world.
Posted by: kim ( Email: ) at 6/25/2009 9:22 PM


thankyou kyle for what you wrote.my son has aspergers.he loves dinosaurs and he obsessed with days and dates.i would like to know how to we all unlock an autisic childs mind.but thankyou for what you put.you have give me so much hope take care love ruth stead
Posted by: kyle ( Email: ) at 8/25/2009 8:30 PM


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