I know that Christmas has passed, but I wanted to share this note before the thoughts of Christmas leave our minds. I was sent this letter years ago and post it annually for families affected by Autism. I hope it helps you at a time when you need to help others understand your child during these highly stressful times.
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 make 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 at math (Albert Einstein was thought to be autistic), or 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, like you would if you landed on an alien planet and didn't understand how the inhabitants communicated. This is why I need to have things done 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 important to respond to. 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 some people, but for me, it's very hard work and can be extremely stressful.
I often have to get away from all of the commotion to calm down. It would be great if you had a private place set up to where I could retreat. If I cannot sit at the table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is impossible for me. I feel so uneasy and overwhelmed by the sounds, smells 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 of the senses involved with eating: sight, smell, taste, touch AND all have complicated mechanics involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky - I literally cannot eat certain foods, as my sensory system and or oral motor coordination are impaired.
Don't be disappointed if mommy hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. A very smart adult with autism, has taught people that when she has to wear stiff petticoats as a child, she felt like her skin was being rubbed with sand paper. I often feel the same way dressed in dressy clothes.
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 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 frustrated. It doesn't mean that 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 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 at my face, flap my arms or any number of things. I am not trying to be disruptive or weird. Again I am doing what I have to do to for my brain to adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking in an activity. the grown ups call this "preservating" which is kind of like self regulation or stimming I do this only because I found something to occupy myself that makes me feel comfortable, and I don't want to come out of that comfortable place and join your hard-to-figure-out-world. Preservative behaviours 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 a while, 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, preservation of your possessions, and to facilitate my integration with you tippies (what we autistic folk often call you neurotypical folks!) 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 this might be fun for you "tippies", 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 "tippy" rules.
I am a unique person - an interesting person. I will find a place at your celebration that is comfortable for us all, as long as you view the world through my eyes!