Ellen Stumbo is one of the employees at The Mighty, and in this post, she asked adults with autism to share what helped them manage the stress of the holidays. Ellen’s blog was originally posted on The Mighty.
With the holidays upon us, conversations with my friends have centered around how stressful this time of year can be for their kids and for their families. With flashy decorations, loud gatherings, disruption to routines and expectations from family members who don’t ‘get it,’ the holidays are often distressing to kids on the spectrum.
Many of the conversations include the questions, “How does your kid handle family gatherings?” or “What helps your child?”
In these conversations, I believe it is always best to include the voices of experts — adults on the autism spectrum. They have “been there, done that” and have solid advice to offer, given their personal experiences.
So we reached out to our autism community, and I also reached out to my friend Carlyle, who runs an autism support group and could help me make more connections with other autistic adults. We asked the question, “What helped you (and what did not help you) manage the stress of the Holidays? What should parents of kids on the autism spectrum keep in mind to help their kids when the Holiday ‘fun’ feels overwhelming?”
These were their responses:
1. “As a child, the holidays were indeed stressful on me, mainly due to sensory overload and gatherings of people. My advice is that you should provide plenty of quiet space, down time, a heavy blanket, or toy for calming, and remember that we are not purposely ‘being bad’ should there be a meltdown. Compassion, patience, and understanding that we are beautiful just the way we are can go a long way during the season.” — Melissa R.
2. “Too loud, too many people, too many expectations and then punishment for not meeting them [does not help]. I am married and have three sons. Between all of us, there is ASD, ADHD, ADD, depression, anxiety, and executive functioning and sensory issues. We don’t go anywhere except maybe the movies, and we don’t have a lot of people in. We don’t expect fanciness or dressing up in uncomfortable clothes. We don’t serve unusual or surprising foods. We don’t keep to a schedule. This has made for some of the best holidays since I was a kid, and we’re very happy with it. Stop trying to please other people, and start pleasing your family’s needs.” — Carol C.
3. “Not being forced into clothes that were scratchy, not having to go to family gatherings, a detailed list of what the activities were going to be, less stimulating decorations.” — Rylander V.
4. “Permission to wear headphones and/or sunglasses, or to disappear into a quiet room when needed. Also, plenty of warning before a transition, usually at least 10 minutes. A quiet ride home helps, too, as well as a ‘recovery day,’ if it can be managed. (And all of this applies to adults, too.) Here’s to surviving the holiday season!” — Julie W.
5. “Having a safe place to retreat to — even better if the event is held in my home and I know the people.” — Brad L.
6. “My family had three large and boisterous households to visit over the holidays when I was a kid, and the one time I was forced to see them all in one day (my first Christmas). I had the worst screaming fit afterward. The biggest thing for me is to not visit everyone at once and have a designated ‘decompression room’ for when things get overwhelming. What I think would also help is having their favorite toys (stimming and otherwise) packed in their own bag, and making sure they know where they’re going and who they’re going to see before you leave your house. Being prepared and making sure there aren’t any unnecessary surprises really helped me when I was a kid!” — Alix J.
7. “I keep a stim bag and try to find a place away from everyone. I also keep music and headphones” — Darrow W.
8. “Less was more. Fewer decorations, fewer gifts, not so many food choices. I found fewer outings, noise and shorter visits to family all helped us survive. As an adult, my son celebrates in a much more lowkey way. We attend church, do the gift giving and have a quiet lunch. It took time and effort to get to this point.” — Tracey Y.
9. “Routine, routine, routine… set up a routine, and keep those precious kiddies in it.” — Kym H.
10. “Frequent breaks in an isolated area. I travel everywhere with ear plugs and sunglasses. Sometimes my wife stands guard of my isolation periods. This is standard practice for daily living in my realm.” — Amy T.
11. “Sometimes ignoring the day as some special day that we have to prepare for is better. Our family has gone through a lot of depression and anxiety because there are so many expectations associated with the holidays. If we can just be more flexible and not try to pack a bunch of hopes and dreams into a single day, it works much better. Our families never really wanted to be at our house (not surprising) so it made it more depressing. We try to make smaller plans with different groups of friends and keep it small.” — Christine H.
12. “We always had a schedule of activities, and when people would be at our house, we talked about what was expected from them, how long the activity was. When it becomes overwhelming [kids] can retreat to their bedroom. We tried to be by the corner or edge at events/activities (sometimes with earplugs, books, tablets). Knowing what was coming and what was expected, and having a few helps really helped with anxiety levels.” — Lilla A.
Ellen Stumbo is the Parenting Editor at The Mighty. She is also the founder of Disability Matters, an organization with the mission to encourage every church to embrace disability. Ellen is a national speaker who focuses on issues pertaining adoption, faith, disability and parenting kids with disabilities. Ellen writes for several online platforms including Focus on the Family, LifeWay, MomSense, Not Alone, Mamapedia, Group, The Mighty and the Huffington Post. Ellen blogs at ellenstumbo.com and you can also find her on Twitter and Facebook.