Letter from a Man with Autism
October 23, 2012
Dear Family and Friends:
I understand that we will be visiting each other for the holidays (or some time in the future). Some times 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 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 well (that’s me) some write beautiful poetry (I am not there yet), others are whizzes in math (that’s me on the computer), or have difficulties making friends (I am getting better at that one). 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 the same way 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. 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 is great when I have a private place to retreat.
If I cannot sit at the meal table, do not think I am misbehaving 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 and people, I just have to get up and move about. Please don’t hold up your meal for me, go on with out me and my parents will handle the situation the best way they know.
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 with chewing and swallowing that a lot of people with autism have trouble with. I am on a new special food program to help me digest food better. So I am very picky at what I can have to eat. I literally cannot eat certain foods.
Don’t be disappointed if my Mommy hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly cloths can drive me buggy!! I have to feel comfortable in my cloths or I will just be miserable!
I love to get presents on the holidays just like everyone else. But if I have a “thought” in my head about what might be in the gift box, I don’t always react in a happy way after opening in your gift and not finding my “thought:” I’m not trying to be rude, I just don’t understand. Sometimes I might even say something that will hurt your feelings. Be assured that Mom, Dad, and my teachers are all working on ways to help me understand how to handle disappointments and to behave more adaptively in your world.
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, jump around, flap my hands around, or any number of 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 (babbling), or partaking in an activity. The grown ups call this “persevering” which is kind of like self-regulation or stimming. I do this only because I have 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 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 “stem” for a while as they know me best and what helps to calm me.
Oftentimes I have to use all of my senses to explore the environment around me. I might touch things excessively to make sense of my surroundings. Many of us autistics get the most information about the world through the visual sense. Sometimes I might even have to touch, twirl or spin things in order to “place” where I am and what I am doing. I learn about the world through channels that may seem unusual to others. But imagine if you were to visit the North Pole without being equipped with the necessary clothing or items needed to endure the brutal environment. How would you feel? You would do whatever it would take to exist. This is what I have to do every moment of every day.
Remember that my mom and dad have to watch me much more closely than an average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you. It hurts my parents’ feelings to be criticized for being over protective or condemned for not watching me close enough. They are humans 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 all your 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!