The holidays are stressful for everyone. It's not news, just a fact.
But to a child with autism, they can be even more overwhelming. The schedule and routine are disrupted with the end of school, breaks from therapy, odd events, people they haven't seen since last year and all of these strange expectations. I've compared having autism to being in a foreign country without understanding the social rules or language, but the holidays is like moving to yet another foreign country.
We limit the number of events we expect our children to go to and then we prepare them really well for the events they will have to participate in. We accept two basic rules:
- If our children are there, we have to focus on them or have someone designated to focus on them. Which means we may not get a chance to socialize and visit. (My husband sometimes uses this as a socially acceptable means of getting a break from family pressure. As an adult with Asperger's, he also finds the holiday upheaval overwhelming.)
- When the children are done, we are done. We pay attention to the warning signs and leave when the kids show us they've had enough (increase in stimming, increase in whining and agitation, retreating to isolated areas). It's important to leave before one of the kids has a full-on tantrum because if we waited until after, we risk teaching them that they can tantrum to get out of boring or unpleasant situations. This has led to some difficulties in the past, but if the kids are done, then it doesn't matter if dinner hasn't been served or presents haven't been opened. We don't wait "just a few more minutes" for a picture. We go.
Sometimes we'll bring two vehicles so that one of us can leave with the kids (or a child if one of them has a particularly short fuse) and the other can continue. It's a compromise but it's made a big difference in how long our family is recovering from holiday disruption.
To prepare the kids, we make sure events are on their weekly visual schedule. This give them a little warning something is coming. (Some kids get more upset with the schedule because it gives them time to brood.)
We use social stories to outline what will be happening at a particular event and what their expected behaviour will be. (First we'll open presents and then you say thank you in a big voice.)
We bring toys and other distractions along with us. Twenty minutes on the iPad might be anti-social but it buys you a little more time. And it gives them something familiar and comforting in an unfamiliar environment.
We keep the demands low. Say hello to people, say thank you, don't touch people's things, no screaming or shouting. We don't expect them to listen to Grandpa's long winded jokes or play with their cousins. We also try and make sure there's a quiet area they can go to where the family knows not to interrupt them.
We keep their clothes casual and comfortable. Some parents like to make their kids dress up but we've made the decision to keep things familiar to avoid the clothing becoming an extra irritant. If you do want your child to dress up, make sure the fabric isn't scratchy or uncomfortable and have lots of practice runs wearing the outfit before the event. An hour or two of playing in their party clothes can make the outfit less upsetting and save you a battle on the day.
We prepare our extended family. This is an important step and a lot of families don't think of it. I talk to whoever's hosting to see about breakables left out on convenient tables, to agree on quiet areas, to warn them about any behaviour concerns I have. If I'm not familiar with their house, I ask them to send me pictures. I ask what the plan is and make sure the important events happen early on. If they plan to have two hours of visiting before dinner, we don't show up until half an hour before dinner to avoid having the kids burned out. I explain what I am expecting my children to do and what I won't be expecting them to do and I set out clear guidelines about who will be taking care of my children. I also give the host an opportunity to ask questions or air any concerns.
I have cancelled going to events when I believed it was going to be too great a risk. I've also walked out when I realized the situation was not going to work. (The quiet area was full of antique dolls at convenient reaching heights.)
For the most part, our system works. The few events we do go to are at familiar places and having stuck to our guns for the last several years, the family no longer gets upset when we have to leave or tries to insist we stay just a little longer. The homes we go to know what preparations to make and people know what to expect from our boys.
There's still some familial bickering and drama ... it is the holidays after all. But it's kept to an acceptable level and everyone goes home with the same level of discontent.
And after all, isn't that what the holidays are really all about?