High hopes for holiday togetherness and good cheer can be no match for the landmines of severe autism.
Andrew snuggles with his dad as they watch music videos together.
Plus six tips for those who want to lend a hand.
By Lisa McCauley Parles
For many years Christmas day meant a joyous day for our entire family, frequently shared in our home with 30+ friends and relatives across three tables and two rooms. Andrew, our son with profound autism, would occasionally escape the crowd by going to our bedroom to watch a number of Sesame Street or Disney videos or into our bathtub for a lengthy “soak and splash.” While in the tub, he had a tendency to water play, toss bubbles on the floor and emit his signature squeal. One holiday a cousin heard him from a floor away and asked “What is that noise?” I responded “Andrew taking a bath.” She said “I wish I had something that made me feel such joy.” We both laughed and went back to putting out the desserts.
But so much has changed for Andrew. After his 18th birthday, he suffered a heartbreaking medical and behavioral collapse. The regression can only be described as an assault on his brain with regression in language, skills, mood, sleep and behavior that came on with full force and without explanation. We tried to find a cause and sought help by seeing countless doctors and specialists in several different states. The testing included, but was not limited to, bloodwork, tissue biopsy, EEG, MRI, EMG, endoscopy, colonoscopy, spinal tap, barium swallow test and sonogram.
Understanding why this was happening, and what Andrew was feeling, was almost impossible given that he is essentially nonverbal, having only a few words. Sleepless nights were frequently coupled with not eating. The longest stretch without food was five days. Andrew was eventually diagnosed with vertigo, but it was not an explanation for all incidents or situations. While the lack of sleep, absence of appetite and unexplained crying were cause for serious concern, nothing compared on the “suffering scale” to his self-injury.
It began with him forcefully hitting the sides of his head. It changed over time in character, intensity and frequency. The landing spot of his blows eventually moved to his ears, which became cauliflowered like a wrestler’s. Currently, the most frequent behavior is scratching his forehead and nose which are scarred and the tissue so fragile from injury it never has a chance to fully heal. My husband says the scratching is at least “better” than the head hitting, which has caused concussions, detached retinas and traumatic cataracts requiring three surgeries. It is true the head hitting is potentially the most dangerous to Andrew, however, the scratching and resulting bloodbath is not painless and can make being in public difficult.
This Christmas we made plans to take Andrew to a resort for one night. I’ve heard it said that going away or even out with a person with autism with Andrew’s profile requires the planning of a Navy Seal team. Do we have enough straws, plastic mattress covers, extra pajamas, linens…? We were anxious for over a week since we learned we did not have any staff to help on Christmas.
It’s been more than a decade since Andrew spent the night with us. The risk of destabilizing his much improved sleep routine at his self-directed home prevents us from having him overnight in our home. We worried and agonized when sleepless nights stretched to two or even three nights in a row. Currently, he does have sleepless nights a few times a year, but they are in his home, so there is no concern of waking hotel guests, or being asked to leave or visited by police. We have experienced all three. In addition to sleep, I worried if the hotel would allow him in the pool given the presence of his wounds. I don’t care about the staring, whispering or rude comments. I just want others to not slow us down since delays and waiting can trigger dangerous incidents.
Andrew likes tubs, music videos, juice, and community outings. He also engages in frequent self-injurious behaviors.
Overnight staff texted us that Andrew awoke at 7:03 am. We were on our way by 8:00 am. Pondering the resort’s amenities I was hoping that he would be interested in the indoor pool or maybe even tossing a basketball around the outdoor court. I was pretty confident he would enjoy the drive-through holiday light show since he had gone to one just last week and loved it. Things seemed hopeful when we arrived at our room in the “cabin” area of the resort which offered more privacy and a buffer from others. Andrew asked for a bath, his favorite spot on the planet, and then rested on my husband’s shoulder to watch music videos. And as we knew he would, he asked for juice. Since excessive drinking can be problematic I gave him drinks in a cup instead of a juice box which he drains in five seconds or less.
We left the room to go to the indoor pool but he became distressed, cried and most heartbreakingly scratched at his ears and forehead. And so begin the repeated pattern of tub, video, juice; tub, video, juice. We tried to go out again. When we told him we were going to a light show he shouted “no” and cried, calming only when he entered the warm waters of the bathtub. He refused all food, including his favorites: cheeseburger, fries, Caesar salad, chips, popcorn and even gummy bears. He would not eat for 40 hours straight. Thankfully, he did sleep soundly. When he woke, his first word was “house” telling us he had enough of this strange place and wanted us to get him out of there.
We were on the road before 8 am for what would be a harrowing ride of repeated requests for juice and bathroom. In addition, there were numerous incidents of self-injury. Each time Andrew looked right at us as if to say “I am uncomfortable.” I’m sure he was both hungry and nauseous. I was particularly concerned about him pulling on his ears since last week his doctor put him on antibiotics over concerns of tissue infection. We got back to his house and drove away in silence.
We were relieved to hear from his support persons that by lunchtime, he ate and calmly watched some videos in his bedroom. Despite what occurred it was not a mistake to attempt the trip since we can’t predict what will work or what will be a struggle.
As difficult as the trip was, I know that so many families in my law practice have even more challenging situations and in some cases even more dangerous encounters. Many are no longer able to attend family events or venture into the community because of behaviors. In some cases, they are no longer invited or included. Families with loved ones such as Andrew do their best to survive the day. For “everyone else” the fact that stores, etc., are closed is a non-event as they fill the day with family, friends and holiday festivities.
Parents often tell me how much they dread the holidays. They count the days and hours until school or day programs re-open or support staff return. For some families whose loved ones exhibit severe, challenging behaviors, holidays are a time to be endured. They do their best in their closed off world and try to find any source of joy for their loved one. Frequently, the focus is just keeping everyone safe, hoping to avoid the generally useless emergency room.
“Parents often tell me how much they dread the holidays…. Frequently, the focus is just keeping everyone safe, hoping to avoid the generally useless emergency room.”
One father, whose profoundly autistic son dangerously ingests inedible objects like coins and exhibits aggression shared with me one of their happiest Christmas holidays. He found a mall which, although the stores were closed, remained open giving the family a place to go and providing his son a spacious place to move around. Another parent shared that walking around the airport helped break up the day and gave his son pleasure. When security measures limited the accessible areas, the visits became a short but still welcome activity. One mom summed up how the holidays made her feel by sharing that it was as if everyone had traveled to a far-off planet and her family remained behind and alone. Not all parents who have loved ones with special needs find the holidays to be so isolating, but many do. I have found that most do not share their stories.
If you care about someone whose loved one has severe and challenging behaviors that prevent them from having a happy and safe holiday, I have a few suggestions:
1. Don’t ask “what are you doing for the holidays” if they have already told you year after year, they will not be celebrating with others given their loved one’s inability to safely participate. Try asking instead “Is there anything I can do to help you leading up to or during the holidays?”
2. Don’t complain about how stressed out and busy you are getting ready for the holidays. Holiday preparations can be hectic and stressful, but for someone to whom hosting or attending is impossible, it’s painful to hear others complain about all they need to do.
3. Offer to take care of holiday tasks for them - wrap presents, put their Christmas lights up or deliver cookies to them. Note, however, many families have abandoned these types of tasks, but would really appreciate an offer to help with something simple like a run to the grocery story.
4. They may decline offers of help. Preparations can be very complex. For example, getting a tub ready for Andrew involves six steps. If that is the case, ask them if there is an organization or agency that supports or serves their loved one and make a donation in their family’s name. But realize some families are so isolated that they lack support or connection to any organization.
5. Finding anything open on Christmas is nearly impossible. If you are going to be away for the holiday, consider offering them access to your home. Even an hour in another location can help “break up the day” and help keep their loved one occupied. This option might not work for everyone but for some families, outings of any kind are welcome and helpful.
6. If attending holiday events are in the family’s view too difficult for the person with autism, offer to include siblings. It doesn’t have to be on the holiday itself but could be offered any time throughout the year.
Of course each family’s needs are different, so asking what is helpful is essential. Most importantly, keep caring, keep inviting, and keep understanding when we decline. And know that your help, while rarely requested, is desperately needed and greatly appreciated, especially at holidays.
Lisa McCauley Parles is an attorney based in New Jersey and is a member of the board of NCSA.