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Hello Friends
Allthough there is more and more information becomming available to us about autism, it is very rare to get first hand information from someone who actually lives every day under the stress and pressures of this terrible disorder. The following is a post from my dear friend Philen's autism forum where she has introduced her new friend, Cyndi, who can help us all understand autism from a first person perspective. You may want to vist Philen's forum and say hello to Cyndi, our new friend.
SIncerly, Bill
Rush
Joined: 29 Sep 2005
Total Posts: 474 Understand Autism Prospective
Posted: Jan 29, 2006 10:06 AM
I thought this was very good for someone with Autism to write about themselves this way. I'm very proud to have her as a friend and I wanted to share her story.
Hi, I'm Cyndi. I'm twenty four years old and I'm autistic. I felt it would be in everyone's interest to share what it's like from my perspective, so I'm posting here. I hope you find it informative.
Most websites I've been to have these really, reaaaaaaally stupid technical descriptions of autism that don't explain anything to anybody who isn't a psychologist. Then I ran across a site specifically about PDD(NOS) http://www.asif37.com/pdd.htm and squealed in delight when I realized it was explaining this demon of mine in layman's terms. I went through it, pulled out certain bits of information that sound exactly like me and added in my side of what's being explained. I hope it's informative....and I really hope it makes sense to others besides me.
People with autism have problems with abstract and conceptual thinking. Some may eventually acquire a few abstract skills, but others never will. Avoid abstract ideas when possible. When abstract concepts must be used, use visual cues, such as gestures, or written words to augment the abstract idea.
If I can think outside the box, I will, but sometimes I can get really confused and lost. I was involved in an online Role Playing game that required a character to solve riddles. I can't solve riddles, no matter how simple they are, and had to have the other player give me the answers just so we could go on. It's really hard to explain, but when somebody gives me a riddle I just get a block in my brain. Then I get frustrated because I take it too literally, which brings us to the next point.
Most high-functioning people with autism use and interpret speech literally. Until you know the capabilities of the individual, you should avoid: Idioms (save your breath, jump the gun, second thoughts, etc.) Double meanings (most jokes have double meanings) Sarcasm, such as saying, "Great!" after he has just spilled a bottle of ketchup on the table. Nicknames or "Cute" names, such as Pal, Buddy, Wise Guy, etc.
I don't take EVERYTHING literally, but I might interpret jokes with a double meaning the wrong way. I have a very dirty sense of humor here, I snicker inwardly when I hear someone say "balls" no matter what they're referring to!
Sometimes when someone teases me I can't tell if they're joking or really doing it. Because I was teased a lot in school I tend to assume it's a mean tease unless I know the person.
Also I might interpret descriptions of something literally - like my mom said her skin might turn black from the radiation treatments she received for breast cancer...I thought she meant her boob would turn black as tar, but she said she meant it'd be all black and blue with bruising.
I also talk pretty simply, those that know me know I'm quite literal in the things I say.
An increase in unusual or difficult behaviors probably indicate an increase in stress. Sometimes stress is caused by feeling a loss of control. When this occurs, the "safe place" or "safe person" may come in handy, because many times the stress will only be alleviated when the student physically removes himself from the stressful event or situation.
I try to leave a room when an argument is going to start. My dad never understands this and just begs to make it worse by either following me or going "don't you walk away from me!". If it's in public I tend to fall into myself and not talk to or look at anyone, but inside I'll be quivering. When things get REALLY upsetting for me, I tend to either hide my face or just get up and leave to be alone.
Don't take misbehavior personally. The high-functioning person with autism is not a manipulative, scheming person who is trying to make life difficult. Usually misbehavior is the result of efforts to survive experiences which may be confusing, disorienting, or frightening. People with autism are, by virtue of their handicap, egocentric and have extreme difficulty reading the reactions of others. They are incapable of being manipulative.
I retreat further into myself when I'm stressed out. Don't talk to me, don't come near me, don't even look at me funny or I can turn into a really mad little woman very fast. I'm a somewhat distant person by nature, but I get even more so in times of distress. My own mind is my escape and if someone tries to bother me when I don't want to talk, I can snap at them or just start crying. Where I am in my menstrual cycle can affect this as well.
Avoid verbal overload. Be clear. Use shorter sentences if you perceive that the student isn't fully understanding you. Although he probably has no hearing problem and may be paying attention, he may have a problem understanding your main point and identifying the important information.
AMEN! Overly verbose people drive me crazy. Just get to the point with me. Don't sugar coat or stall with "um, uhh, ahh, well..." around me or I'll get upset real fast. If someone has to explain something to me, fine, just be prepared for me to ask potentially "stupid" questions.
This problem also makes it difficult for me to pick out the main plot point of a story/fanfic, even in my own. Usually others can find it, but I can't. I just write to make something happen and let the chain begin.
Be aware that normal levels of auditory and visual input can be perceived by the student as too much or too little. For example, the hum of fluorescent lighting is extremely distracting for some people with autism. Consider environmental changes such as removing some of the "visual clutter" from the room or seating changes if the student seems distracted or upset by his classroom environment.
I can't stand buzzing lights or bright colors at all.
Smoke alarms, loud radios and even the sound of keys jingling hurts my ears. I mean I CRINGE at these things because I hear everything louder than most people and those noises are like knives in my ears. Loud, angry voices directed solely at me are always terrifying if it's someone other than my parents. I also cannot stand loud television sets or radios, I tend to listen to the TV or radio at a very low volume that others claim they can't hear at all. And when I was little I was so afraid of my mom's vacuum cleaner that I'd run into my room and shut the door and cry whenever she turned it on.
As for bright colors, I've been told I also see everything much brighter than "non-autistic" people. I believe it because I can't stand neon colors over large areas. Looking at them is like staring into the sun, yet nobody else seems bothered(and I'm glad the 1980's are gone!). Such colors appear to pulsate and it makes me get a massive headache. Small things like highlighters, post-it notes, jewelry and shoes or socks don't bother me, but shirts, posterboards or anything BIG is too much for my eyes. Muted light colors are okay though, just so long as they don't glare. If I visit a website with clashing color schemes(red on blue, pink on lime green, a fluorescent/bold bright-colored background), I have to either turn the contrast on my monitor down or find another website with the same information.
I really hate it when people shine a light directly in my eyes, it burns! Also, I wear sunglasses when I go outside because it helps me avoid getting bombarded by a bunch of color and light all at once. Never really realized how much it bothered me until I did start wearing sunglasses - no more headaches! Yay!
Individuals with autism often have trouble "getting" your points. If the repetitive verbal argument or question persists, consider the possibility that he is very concerned about the topic and does not know how to rephrase the question or comment to get the information he needs.
I have that problem once in awhile. Oftentimes I'll know HOW I want to ask a question, but the right words won't come. More often than not I just pretend I understand because I don't want to look "stupid".
Since these individuals experience various communication difficulties, don't rely on the student with autism to relay important messages to their parents about school events, assignments, school rules, etc. unless you try it on an experimental basis with follow-up, or unless you are already certain that the student has mastered this skill. Even sending home a note for his parent may not work. The student may not remember to deliver the note or may lose it before reaching home. Phone calls to the parent work best until this skill can be developed. Frequent and accurate communication between the teacher and parent (or primary care-giver) is very important.
This is a BIG one for me. I MUST, MUST, MUST have instructions or phone messages down in writing or I'll forget. Don't just tell me to 'tell so-and-so I'll call them back at such-and-such', you have to either dictate it while I write it down or write it down for me. And don't EVEN ask me to relay messages with numbers because I WILL confuse them horribly. And if I keep the note in my hand or within my sight, I won't forget to deliver it.
Be as concrete as possible in all your interactions with these students. Remember that facial expression and other social cues may not work. Avoid asking questions such as, "Why did you do that?" Instead, say, "I didn't like the way you slammed your book down on the desk when I said it was time for gym. Please put your book down on the desk quietly and get up to leave for gym."
I don't have TOO much of a problem with this, but I get frustrated when someone tells me I'm doing something totally wrong when I was never told how to do it in the first place, and then they don't even tell me how to do it right after telling me I was wrong. Don't have this one too often, but when I do, I could get mad enough to spit fire.
In answering essay questions that require a synthesis of information, autistic individuals rarely know when they have said enough, or if they are properly addressing the core of the question.
Sometimes I say/write too much or go blank and skip it. I'm a very scattered person and even with a very strict set of instructions, I still have trouble finding where to start. Projects that require research are impossible for me, makes me feel like that silly Quixote guy who jumped on his horse and tried to ride off in four directions at once. Ain't gonna happen.
Prepare the student for all environmental and/or routine changes, such as assembly, substitute teacher, rescheduling, etc. Use his written or visual schedule to prepare for change.
Yes, please, my dad does NOT understand that I don't like to be told I'm going to do something five minutes before I have to do it. I might have had plans to Role Play online or write and I get really pissed when those are interrupted. Tell me that morning or the night before so I can plan myself around it! Even with advance warnings I might still be mildly stressed out because it's still a change in what's normal to me. This is really apparent when key people in the church choir I sing in don't show up and I'm suddenly the section leader. If we do badly I feel like it's MY fault because I didn't keep them singing the right notes. One night of this nearly drove me to tears
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