Then, well, after today with the doc telling the boy that Aspergers is NO EXCUSE for poor behavior I remembered this letter and got mad at myself for even thinking that it was appropriate to send out. This mades me think of the "secrets" we are supposed to keep and all that other tripe. Of kids allowed to misbehave because of their diagnosis, or of parents thinking it is OK to allow for the abberant behavior. We are teaching the boy to not react, hold it together......the sad thing is the places where he believes he is safe, are the places he has to be the most careful and watchful. That is a hard thing to teach.....if he gets overwhelmed in cramped spaces we still have to leave, if he is hungry and the blood sugar goes too low, we have to leave- but we are trying to get him to the point where he can manage himself AND work to keep it together and NOT have to leave.
Our summer taught the three of us a lot of stuff. We know now what situations we need to avoid. The boy still is adverse to having his picture taken. He still doesn't want to deal with potential photos coming out that might embarrass him. He is thinking about these things now...and realizing that maybe being famous or popular is not all it cracked up to be....but he is thinking about these things FOR himself.
We have told the boy for years that his Aspergers IS NOT AN EXCUSE to behave poorly. It's not, and Aspergers isn't a cop out either. WHAT IT IS: something to be worked with and used postitively. Aspergers is NOT an excuse, ever! And you know what, we pay this doc a gob of money and she is worth every damn penny. THE BOY listened....did his own homework, and was well behaved and very good.
I will give you the "holiday letter" and then ask you to tell people to stuff it if you ever get it from anyone. YOU do not have to accept poor behavior as an excuse. Poor behavior is just that POOR behavior and the kids have to learn to control the anger and noise and behavior issues, hormones and all that other stuff just like the gens do. Aspergers is Aspergers is Aspergers: good manners and politeness are part of the package and you darn well better behave....at least that is where the boy is at now. Like at work, you have to desenitize to get rid of the noise around you and the sounds of people working. You learn to drown it out and not "hear" it. That is what our kids need to do ideally and as parents, the cuter half and I need to do it better. We stink at it (see above) but we also need the support of people not questioning us when we are attempting to do it right.....and if we screw up we screw up. We never claimed perfection, we know how we would like it to be and it doesn't always work that way.
NO Excuses (Oh and you gens, don't encourage someone with Aspergers who is younger than you to act like a goof- totally not cool).
Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called Autism, or what some people refer to as a Pervasive Developmental Disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: Some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you--I am not. Rather, I am hearing everything and not knowing what is most important to respond to. I may say things inappropriatly and not understand what I am saying but just say things to keep talking. I like to talk to people.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I can not sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky--I literally cannot eat certain foods or spices as my sensory system and/or oral motor coordination are impaired.
Don't be disappointed If Mom hasn't dressed me in starch and ties. It's because she knows how much stiff and scratchy clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the neuro typical world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please be patient with me, and understanding of how I have to cope.
Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kinda like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me "stim" for awhile as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person--an interesting person. I will find my place at this Celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!