Help Me Navigate the Holidays With Autism

The holidays: an equally wonderful and intense time. There’s so much joy, love and community, but also so much stress, anxiety and chaos. While that’s true for anyone, for some individuals with disabilities it’s overwhelming. Being part of the autism spectrum, I equally love and loathe the holidays.

Every year I have a loosely planned expectation in my head: when I’m shopping, when/what/if I decorate, when/what/if I make treats and what events I want to partake in. It’s the fairytale version of doing it all, seamlessly with my regular schedule while enjoying every moment. And every year I hit a point halfway through December when I start to shut down. Expectations don’t happen. Plans frequently vary. There’s a strain on time and energy. Looking back, there are little signs peeking out a few weeks before I start to shut down. More anger flare-ups, more inflexibility with changes, unable to perform the usual amount or flow of daily activities and feeling blank and zombie-like.

My mom would say I do it every year. For years I’d deny it and try to plow on until I reached a breaking point, but I’ve come to understand myself better to see when it’s happening, and I love and am gentle with myself enough to give myself permission to be that way —  to not have as much control as I’d like. I may have to adjust a lot (which likely includes giving up some of the previously envisioned intentions), but this year I’m OK with that.

As my coping is currently decreasing, here are the biggest things I know are pivotal for me to navigate the holidays with autism and to actively be a part of the festivities with minimal or no repercussions— because I do want to participate.

1. Let me know about finalized and possible plans and functions at least a week in advance.

A good two weeks (or more) is even better. This ensures I can schedule accordingly, and if something is really important, I can include it in how I account for energy and being present. If necessary I’ll find other activities that can be compromised to make room for yours.

2. Recognize and respect my need for extra downtime outside of regular obligations.

A majority of spectrum individuals are energetically sensitive, myself included. We’re naturally more in tune with and involuntarily pick up a lot from our environment. When things are going well it’s usually just our immediate surroundings. During the holidays, however, we can pick up and feel everyone and everything in the house, community and country. We shut down quicker and need extra recuperation than usual to get to a solid base. Please let us have that, especially on stressful days.

3. Even if I rarely show up at events, please continue inviting me to them.

I always feel bad if I don’t actually make it. It’s not because I don’t care or wasn’t interested. Sometimes it’s because of previous obligations or the location. Sometimes it’s because the day or hours before I didn’t have the energy or ability to attend without sacrificing current functioning. Regardless, I am there with you and enjoying it in spirit. Whether I’m absent a few times or a lot, keep including me in opportunities. It lets me know you love, appreciate and care enough that you do want my presence there and I will be warmly welcomed whenever I’m able to attend. It means more than you know.

4. Help me prepare a plan if I become overstimulated or can’t handle any more.

No matter how well functions go, there is almost always a point where we need to leave soon. Or now. If we’re lucky that’s the natural end of the event. Knowing my telltale signs of when I’m starting to withdraw or lose functioning will help both of us, whether it’s from your own observations, specific body cues we’ve agreed upon or me directly saying I’m reaching the end and am pretty much done. We’re trying to avoid becoming so overstimulated that a meltdown or breakdown could occur, and we don’t want that. If we can’t leave, help me find a safe, quiet space where I can collect myself uninterrupted.

5. Be flexible with how things play out; gently support and remind me the “new way” is OK, too.

Extra activities equal higher energy taxation. This might mean more time getting ready, as we’re probably dealing with the anxiety of the impending event or that we’re not able to fully interact or stay as long as intended. By staying calm and flexible, you help us breathe and (start to) let go of rigidity. If we begin to stress out too much, calmly telling us the “new way” is OK lets us know you support us. We need to hear that.

6. Continue to love me, no matter what form I’m in.

We often beat ourselves up for not fully materializing our intentions. There are days we can handle it better, but there can be days where functioning is lower and we’re only able to do self-care. Above all, continue to show and tell us how much you love us, no matter how we look that day. We’ll always take note, appreciate it and give the same love back.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. If you’d like to participate, please send a blog post to mentalhealth@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images