I’m a young adult on the autism spectrum, and I absolutely love celebrations. Any time that brings my favorite people together in a spirit of joy makes me happier than almost anything. The presents aren’t so bad, either! But, often, in years past, my anticipation leading up to the big day culminated with a lot of anxiety and even overload. Over the years, my family and I have naturally adjusted the way we do holiday celebrations in some ways so that I can participate without getting overwhelmed. Some of these suggestions are directly from my experiences, while others come from my autistic friends or their parents. In any case, I stand behind all of these ideas. Your family probably won’t need all of them, but you will find that minor changes make holiday joy accessible to everyone.
Holidays are full of sensory experiences. If a child has a specific sensory challenge, such as avoidance of loud noises, then it makes sense that blaring music sets him up for a meltdown. Crowds cause me more stress than anything else; specifically, I hate to be bumped. Since holidays are already a time of emotional excitement and sensory experiences (two things that are very closely tied together), realize that this combination might make our reactions even more intense. You may even see completely different reactions. For example, a child who is not usually noise-sensitive may show more sensitivity, due to the increased baseline level of input at a holiday event.
It’s important to remember that behavior is communication, and that, often, it is a sign that something in the environment is upsetting or painful, or else it signifies that a child is unable to communicate a want or need. Prepare in advance to incorporate necessary vocabulary into any means of communication possible for the child. Be careful about punishing behavior during holiday events, especially if the child’s routine has changed or the environment is chaotic.
There are two ways food can be an issue: On one hand, there may be food we desperately want but cannot have. In these cases, have equally-delectable alternatives available. On the other hand, some foods might strike us as utterly gross. I always explain that my brain does not recognize many things as food … in fact, they’re more like a muddy sneaker (would you want to eat that?). If you want us to join in at the table, have something we like. Holidays are about family and friends and celebration and remembering, but people often signify all those things with special, delicious foods. We should also be able to enjoy our favorite foods, even if they’re the things we eat every other day of the year! Also, consider allowing us to eat separately if we wish to do so. Again, it’s a holiday, and forcing a person’s discomfort is the opposite of what holidays are about.
Whether the family comes over to the child’s house or your family visits someone else’s home for the holiday, having a “safe room” or a “quiet room” set aside is one of the most crucial things you can do. Show the child the room in advance, and even check in with him about taking a break throughout the day. A holiday movie playing in the room, or another favorite movie, along with the favorite sensory toys makes a safe haven. Even as an adult, I absolutely have to take quiet breaks or I become completely overwhelmed and can no longer socialize. At the autism center where I work and spend a lot of my time, I often go behind the desk because it acts as a bubble, giving me space. I also frequently escape to a bathroom for quiet! Having a more friendly space would be a great tool, and I plan to use this idea at any future holiday parties.
Please be aware of and respect our social, communication, and sensory limits. In general, I am not able to “fake it” once I’m done. Done is done, and that’s the end of it. There is nothing I can do to continue to chat or smile or stay in a chaotic situation. One of my favorite tools for gauging my limits is Kari Dunn Buron’s Incredible 5-point scale. It’s something for everyday use, too. The child establishes what he feels, looks like, and needs at levels 1 through 5, and then, at any time, the parent or teacher can check in and ask the child to identify the current level. Since it isn’t always easy for others to tell what I’m feeling based on how I act, having me identify the level helps others to know rather than have to guess.
A lot of this falls in the realm of social interaction and participation. Many spectrum kids are not able to be part of the action for the duration of the event. Teens and adults on the spectrum may appear to be ignoring the company by spacing out on our cell phones, but often, this means we are regulating as best we can while staying in the same room as the guests. Anyone in attendance needs to know not to force the child (or make him feel forced) to go beyond his limits. Remind the child that there is nothing wrong with taking a break. Another key part of expectations is the whole idea of age appropriateness. Some professionals insist that we have to “like” things that other our age like, even when we don’t. Holiday or birthday gifts are not gifts at all if they aren’t things the child actually wants. Some educational gifts are fine, but the whole idea of age-appropriate is something that only because an issue for people with disabilities; if a typical adult loves Disney, it’s fine, but it becomes a “symptom” for us. Please banish the concept of age-appropriate and recognize happiness for the great thing it is, regardless of the source!
When I asked friends for input on this list, one of the moms said, “Hold on, I’ll ask my son.” Her son, Kreed, is 17 and non-speaking, but the pair have worked extremely hard to achieve communication through a device. Presuming competence, or living out the belief that the child is capable, often seems like a huge undertaking, but this moment captured how it is more often a series of very small decisions. Any chance a child can make choices, let him. Whether through a device, typing, pictures, yes/no questions, a “yes” card in one and a “no” card in the other for the child to point… any way the child can provide input, let him. Also, know that we soak up so much of the holiday spirit and family traditions, even when we cannot communicate it! Now that is worth believing.
Encourage family in advance to talk to the child in an age-appropriate way and to engage in the child’s preferred communication method. Following the above situation, when Kreed’s mom asked him what he wants everyone to know, he said several times that he wanted to communicate with family through his device. He said, “Don’t say hi and walk away.” Yes, we can be slow to respond. Sometimes we don’t respond in an expected way. Other times, we need the question asked a different way. Whether we speak with our mouths or not, we have voices. We have all worked extremely hard to gain those voices, and it’s hurtful when people don’t allow us to use them.
Changes in routine are hard, and holidays are apt to upset our schedules. Sometimes, sticking with the tried-and-true is better than having special holiday changes to our days. Again, holidays are about joy and connection, and changing the routine can be a detriment to that. Visual schedules and social stories are a good way to prepare in advance. Instead of decorating the whole house in one day, try putting up one new item each day in December. Rather than piling traditions one after another, consider selecting two or three favorites and doing them exactly the same way each year. In these ways, Christmas in itself can become a routine, and that will bring holiday joy to the hearts of us spectrumites.
When it comes down to it, holidays are for all of us to enjoy. Stepping back and thinking about a child’s preferences and challenges will allow you to adjust the celebration in such a way that we can be part of the fun and excitement. After all, as every autism family knows… we are different, never less!
Lydia is a young adult with autism whose world revolves around her faith (with cats and the color pink following not far behind!) She likes to spend her time doing anything that can be created, from drawing, to painting, scrapbooking, needlepoint and of course, writing. She tends to live life hard and off the beaten path, but she likes it that way. She was diagnosed at 21. She received services through her state’s Adult Autism Waiver for 18 months before her health got very complicated. Though she lives in a nursing home, she sees no reason why she can’t change the world.