The holiday season is here: Everyone is busy shopping for gifts, company is coming over, school is out…The holiday season is magical for some, but can be hectic for a family with an autistic child. Christmas, Hanukkah, Kwanzaa--whatever your personal celebrations are, there is a lot to take in when you have a child on the spectrum. For children with autism this time of year can be particularly overwhelming: lights, crowds, traffic, visitors, waiting in line – this upsets children who are used to a particular routine. This time of year brings the autistic child and the entire family out of their usual routine and exposes them to people and places that they may not be familiar with. This can create a host of problems, including increased stress levels for all involved.
Social requirements such as relatives wanting a hug or a kiss can be overwhelming for your child. Holiday dinners can be especially difficult - your child may be expected to try new foods or sit for long periods of time with a lot of people and a lot of noise. Your child may not understand personal space or safety and may run around the house or try to play with something breakable. If your child cannot communicate what he/she wants tantrums might ensue. Relatives may think that the child is misbehaving, and may try to discipline the child, not realizing that the child really can’t help it, and that discipline is not helpful when it comes to sensory overload and high anxiety.
Now is a good time to take a deep breath and make some very specific plans that will help you get through this period. What can you do? With some preparation, planning and information sharing, the holidays can be less stressful and more enjoyable. Here are some tips on how to prepare your friends and relatives whom you will be visiting the next few months more easily.
Like any behavior we are trying to increase, behaviors we want to see during the holidays need to be practiced and reinforced. Creating similar situations to holiday events where your child can be reinforced is a good start. For example, you can place a wrapped gift in front of your child and prompt him/her to wait or keep hands down and reinforce this behavior. You can reinforce your child for keeping ornaments on the tree. At the beginning of the holiday’s establish these types of clear “holiday rules”. These rules tell your child about your expectations and should be positive. Use “do” statements rather than “don’t statements”. For example “hands down” rather than “no, stop touching”.
Remember your child’s needs. Try not to have unrealistic expectations for your child when visitors or relatives are over. A little advanced preparation can lessen your child’s anxiety. You can help your child by trying to keep his/her usual routines. Try to keep mealtimes and bedtime the same. Ask if there is a quiet room if you are at a relative’s house where your child can retreat for some quiet time to escape the commotion and noise.
Holidays can be confusing from your child’s point of view. You can also prepare for the holidays by thinking of them in terms of activities that occur before, during and after the holidays. Examples include cleaning the house, getting decorations out, taking photos, shopping, buying a tree, starting school vacation, taking decorations down and writing thank you notes. Providing information in a way that your child understands is essential. Give your child lots of information, for example, mark special days on the calendar. Use picture symbols to support routines and aid in communication. Use social stories – these personalized stories can be used to incorporate what will be happening in the days ahead. Include photos of who he/she will be seeing or the house decorated during last year’s holiday season. Play some of the music he/she may be hearing at this holiday season. Some other behaviors you can work on to prepare your child are practicing unwrapping presents – wrap a bunch of boxes up with favorite treats inside and have him open them to get to them. Practice a handshake . Practice tolerating sitting at table.
Also, where will you be spending the holidays? Call or email your extended family or friends and let them know what your plans are and what you need from them. Make decisions based on what is truly best for your child. Call in advance and discuss specific details of the gathering. Who will be there? Do all of the people in attendance know your child? Does everyone know what Autism Spectrum Disorder is? Are they comfortable and familiar with your child's special needs? Cover all your bases several weeks in advance by writing a group email or letter to those who will be in attendance. Let them know the things that your child is uncomfortable with, but also the things they are particularly fond of.
Remember, it’s up to you. With a little advanced planning the holiday season can be enjoyable for you and your child.
Below is a sample letter you can use
HOLIDAY LETTER TO RELATIVES AND FRIENDS TO PROVIDE INFORMATION
ABOUT YOUR CHILD AND AUTISM
"Dear Family and Friends:"
This was written for the purpose of it being sent to relatives, friends, and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism. This letter is written as if the autistic individual person is writing it personally.
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 neurodevelopment 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.
Thanksgiving & Christmas are 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 grownups 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 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!
*Author, Viki Gayhardt
