Erin Clemens doesn’t dislike the holiday season. On her Facebook you can see her smiling next to a horse, its mane braided with bells and bows. The caption reading: “It’s beginning to look a lot like Christmas!” But, because Clemens has Asperger’s syndrome, the holiday season can feel fraught with hazards. Routines are disrupted, social pressures are applied, and then there’s that torturous wait for Christmas morning. It’s nice, but it’s also a lot to handle.
“The most difficult aspect of the holiday season for me is the change,” Clemens tells Inverse. “There is change in almost everything — weather, special television programming, etcetera. But the biggest change is when the holiday itself comes — most stores are closed, friends are busy with their families, and my routine just gets completely messed up.”
The compulsion to be rigid about established routines is one the primary identified components of Asperger’s, a disorder that registers on the autism spectrum and effects around .5 percent of the population (more specific numbers are hard to come by). People who have Asperger’s often struggle with typical social communication, sensory stimuli like noise or lights, and, at times, have impaired communication skills. But symptoms vary greatly among those with Asperger’s, so, experiences — and specifically holiday experiences — vary widely.
Clemens, who is in her mid-twenties, has done all she can to be an advocate for her community and to communicate what it’s like to have Asperger’s. She speaks on mental health issues, runs a prolific blog, and authored the book I Have Asperger’s. You’d be hard pressed to find someone more aware of their own inner life than Clemens, who was diagnosed when she was 15-years-old, but self-awareness — as many people might tell you — doesn’t necessarily make Christmas easy.
“I don’t travel for the holidays, otherwise this would be the most challenging aspect,” says Clemens. “This would be a major change in routine. I don’t travel well on my own and I get very stressed out from traveling for so many reasons — I am limited in where I can get myself to because I can only drive to certain places.”
She has to make sure that she knows she’ll be able to find something she can eat — she’d rather eat nothing than something she doesn’t want to. And traveling is, if anything, a stifling public affair — if she feels like she may have a meltdown, the chance of privacy is slim.
For Clemens, the potential of a meltdown is part and parcel mitigated of the freedom she enjoys as an adult. If she doesn’t want to do something, whether it’s caroling or attending a holiday party, she won’t. She doesn’t make those decisions lightly.
“Over the years, I’ve found that creating my own holiday routine and traditions tends to help,” says Clemens. “This gives me something to focus on and take control of. I feel that I need to be more in control of what’s going on in my life, and it’s hard to do that around the holidays — especially when you are a kid!”
Clemens’ concerns are shared by many who either have Asperger’s or are close to someone with Asperger’s — the internet is full of blogs advising parents on how to best help their children make it through the holidays without a meltdown. Advice boils down to “mitigate”, “maintain,” and “prepare.” Having a “I need help” code word helps, as does practicing social scripts before heading into a holiday affair.
For Clemens, one of her greatest concerns has become a semi-defeated foe: patience. While all Christmas-celebrating kids eagerly await Santa, Clemens’ inability to wait was at a different level.
“When I have something I’m excited about and have to wait for it, I can’t stop thinking about it,” says Clemens. “I can’t move on until that wait is over.”
She also thought she didn’t have the patience to ever write a book. But she did, and writing has liberated a part of her. Before she was diagnosed, Clemens felt unable to explain what was going on with her, it was as if “I was screaming, but nobody was listening.” Now, she feels, people are finally listening.
“I know I’m only one person on the spectrum and each person is an individual,” says Clemens. “I just want to help others when I can.”