Guts is writing this letter because I can't...yet, but please take note because he knows me and he knows Heart, and they are my life and would like some people that want to know to know what hey need to so here goes:
I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?
What this means for those on Team Spirit: This is hard for Heart and Guts, because although they don't want me to be defined by my autism, they would also like you to take note that there are times when I can no longer fight off my autism. I do a pretty good job most of the time, but it is nice when others understand that my behavior may be outside of my control. I don't have a wheelchair or a cane or something that physically represents my autism, in fact most people that see me on a limited basis have a hard time telling I have autism at all. This makes it that much more important for those that I know to educate those people that don't know. I don't want to seem over reactive, it is just more difficult for me to fight off the autism when other things are hammering on my sensitivities. You probably experience similar situations in your life when you are exceptionally tired, hungry, stressed or nervous. It is hard to react appropriately at these times for you, now imagine that being the case ALL of the time. It's hard, and I know I can be frustrating, but if you are patient, understand that I am having a hard time fighting it off, and take some extra time, I can (most of the time) get back on track. If I can't, call Guts or Heart, they'll know what to do.
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, and they’re mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.
Because I am visually oriented, this may be my first sense to become over stimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.
What this means for Team Spirit: Smells and tastes seem to be my biggest misperceptions loud noises are a little hard too, but if I am prepared or they are associated with something I like to do, I can usually fight off my autism. Keep in mind that just because I can, doesn't mean that I will. I try to participate as much as I can, but there are times that I can no longer handle all of the over stimulation. There are signs that I am getting over stimulated, I become withdrawn and seek an activity that can "reset" me as Heart and Guts put it. I may also ask to leave. Please don't take offense. I am not trying to be anti-social, rude, or inconsiderate. Quite the contrary, I am trying to avoid making a scene and moving to a meltdown. If it looks like I am getting overstimulated, removing me from the situation for a while is the perfect remedy, keep in mind this may not always work, but it's worth a shot. :-)
3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Spirit. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Spirit. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.
What this means for Team Spirit: So many times people think that I am CHOOSING not to comply with their requests. Please remember that I am fighting with myself constantly. My autism is a constant uninvited guest in my head, I don't want it there as much or more than you do. Please don't think that I am being rebellious because I want to. What I want is to keep that uninvited guest at bay for as long as possible. This means that I have to understand completely what you want, and even then I may not fully understand what you want. I promise to give it my all, if you will promise to be patient and understanding when I don't fully succeed, but hey, that means I succeeded a little right! Let's celebrate that, the more of a positive experience that I have the better chance you will have of getting me to try it again. Remember that uninvited guest hates failure, and what you perceive as "progress" may just translate into failure to him. So keep it positive and upbeat, and I will be much more able to keep him at bay.
4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.
What this means to Team Spirit: I'm getting better at this skill! I can usually tell when someone is being funny, or trying to be sarcastic in a funny way. I have a much harder time when people don't explain the sarcasm right away, or they do it in a semi-mean way. Sarcasm is inherently mean anyway and it is hard to understand why anyone would be mean to me, especially those that are closest to me. I know that "good natured ribbing" as Guts calls it, is a part of some people's everyday interactions, I'm just not in a position to interpret it, and thus I react very negatively to that type of interaction. Inference is also very hard for me, you may look in my room and say "This room is a mess." I will not infer that you are telling me that you want me to clean it up, I will simply agree. (Thinking you are stating a fact.) So be simple and be direct. Take the short route to the barn, as Guts says, and we will understand one another perfectly.
5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.
There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.
What this means for Team Spirit: Patience, Patience, Patience. My vocabulary is limited, but if you wait on me I will tell you how I am feeling. I only bottle up when I am over stimulated AND expected to describe my feelings. Most of the time I will tell you. I also am very good at multiple choice, if you give me some choices and you get it right I will usually confirm your suspicions I am almost always using Echolalia to fill the spaces in my conversation or to withdraw from my conversations. Let me do it, unless you need something from me directly. My limited vocabulary and high stress/stimulus situations drive me to it as a coping mechanism. If you pull me out of it, over and over, you aren't allowing me to cope with whatever is stressing or stimulating me, and that can lead to a meltdown situation.
