Navigating the holidays with autism
I hope everyone’s been having a great holiday season! Whether enthusiastic about it or not, the time has come for families and friends to get together and celebrate. This particular time of the year means many things for me: turkey, inviting aunts and uncles over, wrapping presents, my siblings asking me to wrap their presents for them, pie, singing, joy, worshipping, and getting really excited about making cookies! However, holidays also mean a messed up routine, sensory chaos, and unwritten social rules.
Sensory stuff is tricky. It is very different for everyone on the spectrum. But I think that even people that do not have sensory issues or autism can admit that the holiday season is very overwhelming. Flashing Christmas lights, new food smells (and tastes!), hugging grandmas, and really loud uncles are all a part of the package. Having a place where your child can take a break from it all is a really good thing to consider. Even during this Thanksgiving I had to retreat to my room and do some quiet activities to calm down.
If your kid is under-sensitive to sensory input as opposed to being over-sensitive, I cannot tell you how important it is to give them a place where they can let off some energy! Fourth of July is my favorite holiday. I loved the bright fireworks, the rumbling, gassy trucks, and the parades. During most of that day my family was outside. If I was overwhelmed I could just run it off! I was allowed to sing and jump and run around. That definitely made a big difference in how much I was able to participate and celebrate that day.
Family can be a big part of the upcoming holidays. It is stressful for both the parents of an autistic person and the autistic person. Some relatives (especially older relatives) who are not a part of the daily life of a special needs family are not always clued in to certain challenges. It can be hard when someone mistakes your child repeating words as disrespectful, or thinks your child is ‘cold’ when they don't want a hug. As an older person on the spectrum, I don’t run into this problem much because I can self-advocate pretty well, but not everyone can do that. I suggest giving out a card that has some basic information and tips on how to interact with your child. Please remember that even if you think your child can’t hear or understand others, it’s important to presume competence. If your autistic child overhears an unknowing relative call them ‘bad’, that is hurtful, no matter what.
During the holidays, routine gets messed up. I have a certain routine that I follow every day, one when I have homeschool, and one when I go to my transitional program. Obviously, you can’t have the same routine on regular days during holidays- holidays are special and meant to be different! Despite this, there were a few things that helped me transition easier.
My family has had the same loose routine for holidays. At my dad’s house, we open presents at the same time every year, and in the same order. Simple verbal reminders were also helpful for me. For example, “it’s time to sit at the table now,” or “aunt Susan is going to play a game with us in ten minutes” really helped me get into the swing of things.
The last thing I want to talk about is meltdowns and family. Meltdowns are not fun; not for the parent, not for the family, and not for the autistic person. That is why it is so important to de-escalate factors that could cause a meltdown before you reach the point of no return. That means creating good outlets for sensory issues.
That also means educating family members. Trust me when I say I would rather have family know I am disabled and understand me than thinking I’m ‘normal’ and misinterpreting my behavior. . For me, at least, it feels way more alienating when no one understands my behavior, then when people know that I am autistic. Feeling isolated in who you are and what you are feeling creates so much anxiety.
I wrote this in a longer email to a mother of an autistic child who asked me a few questions. Here is the best way I can put what it feels like to have a meltdown in words:
“Meltdowns are rough. Having a meltdown feels awful, and afterward you feel really bad. For me, it is like this: either being overloaded by sensory stimuli or being overloaded by emotional thoughts that repeat themselves over and over to you. It gets to the point where two things happen- you feel awful and out of control and like you are detached from the world and feeling anything, while at the same time you are feeling everything. Secondly, your mind feels like it is unwinding. You can't think anymore, and it hurts really badly. Everything feels like black static. The words people are saying to you don't mean anything- they just turn into sounds. Sight, smell, taste, touch, sound, and movement separate themselves and feel sharp and sick and sad- even a light touch on the shoulder can feel like fire ants crawling all over you. And at the same time, it like you are watching yourself from a distance, and yelling for it to just stop.”
If you want another person’s perspective on it, here is a blog post made from an adult who is on the spectrum.
In conclusion, I hope that some of my experiences and tips are helpful. All in all, holidays have been a good thing in my life, and I owe that to my parents and my relatives for being accommodating, so that I could participate in celebration just as they do. Have a good Christmas or Hannukah or Kwanzaa!