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Dec 11 2012

Autism at Christmas: Please Be Understanding!

I shared this last Christmas and thought it was important to share again.  The holiday season can be a very stressful time for those that are on the autism spectrum.  As much as I love Christmas, I hate it too… and I don’t like saying that.  However, the anxiety that exists in our house right now… I would really rather do without.

Each year, it’s always a question as to whether or not we will even decorate for Christmas.  We put our Christmas tree up the other day and after a three-hour meltdown I thought we were going to have to take it down… but we’ve managed to work through some of our challenges and at this time, the tree is still up!  YAY!

So for those that are new to the autism diagnosis… or for those that may have someone in the family on the spectrum… this is a good letter to read.   It makes life a whole lot easier for everyone if we can understand… even a little bit… and accept our children, friends or family members that are likely going to be dealing with a number of extra difficulties this holiday season.

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, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. 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.

Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that 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.

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 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, 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 as my sensory system and/or oral motor coordination is impaired. Don’t be disappointed if Mom 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. 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 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 kind-a-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 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, 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!

*Author, Viki Gayhardt

Jen

As a Canadian blogger and the mom of a child on the autism spectrum, Jen shares a lot about life while having a child with autism... raising autism awareness and the need for acceptance. She is an active advocate both online and in the community for those with autism but also service dogs. Also as a volunteer for the I CARE Foundation Jen shares a great deal of information about international parental child abduction (IPCA) in an effort to help raise awareness and educate parents about the risks and warning signs of international parental child abduction. Mom-ology has been ranked in the Top 25 Canadian Mom Blogs for 2012 & 2013, one of the Most Influential Canadian Mom Blogs for 2013 as well as placing in 1st (Disability) & 3rd (Activism & Social Justice) for the Canadian Weblog Awards 2013.

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3 comments

  1. Tracy @ usingtimewisely.com

    Love this letter, Jen! With my kids driving me nuts with wanting to do more activities and see more lights, sounds, and smells of Christmas, I tend to get tired of all the going. However, your post is bring me back to gratitude for healthy children.

    My goes to the family in the middle with some children adjusting to every slight change while the rest of the family ready to hit the pavement and soak in all the holiday happenings.

    Thanks for posting a letter from an autistic point of view. It helps to understand the person’s reaction.

    May you enjoy your Christmas traditions in a timing that works for you family. Keep protecting, hovering, and educating, Jen! :-)
    Tracy @ usingtimewisely.com recently posted..Start Saving from Scratch – Part 6 of 6My Profile

  2. Shanell

    Love this! I shared it on my blog. Thanks

    1. Jen

      Thanks for visiting… and for sharing Shanell! Happy Holidays! :)

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