A few weekends ago, my dad’s long term care home held their annual BBQ. We had gone the previous year, with N and my mother, and it was a fun event at which N behaved admirably well. So when it was time to go this year, I decided to take N along, based on the previous positive experience.
This time, however, it did not go so well. I still have not given up on the possibility that some day we can take N to a social gathering, where he can manage the confusion and also blend in, if only to feign normal social behaviour. When I experience a dismal failure, I try to think about what went wrong, how it could have worked better, or ultimately whether similar social events should simply be avoided.
Parties have always been difficult for us and for N. I remember a particularly kind elementary school child inviting N to his birthday party many years ago at a play gym. I was so touched by the kindness that I said “yes” but I told the family that I needed to come and stay with him to help him manage. It was hard for me to watch the games they played, like escape-the-lightning (created by multiple balls rolling across the gym floor) which sent the other children running away screaming with delight, but N, who did not understand, stayed in the middle of the gym and was repeatedly “struck” by lightning bolts(rolling balls). The children were naturally amused and laughed at N who just stood there in the middle of the gym, mesmerized by a rotating ceiling fan high above him. I ran to him to save him from the lightening strikes, and he reluctantly let me guide him off the gym floor. We stayed for pizza, even though N at that stage did not know how to eat it (turned it upside down, toppings fell off onto the floor, N took one bite then put the gooey slice in his hair – more amusement). We stayed for cake and the traditional “happy birthday” song (he was more interested in the candles and had to be physically restrained from shoving his fist in the cake). Impossible to tell if he had any “fun” at the party. For N there were lots of stims at the event and afterward. It was not fun for me, I left feeling like I needed to sleep for a week.
We politely declined all subsequent birthday party offers that followed.
We try and try, and then we reluctantly acquiesce to the reality. We have to make the day-to-day possible for him, for us, the family. And so I have decided that such social events must be avoided: if N must attend so that we may attend, then none of us will go. My son simply cannot cope with sensory overload. Summer BBQ parties, with their non-routine venues filled with unfamiliar sights, strange people in close proximity, loud music and conversation, strong smoky smells, and heavy summer air dripping with heat and humidity – are altogether more that he can cope with.
This year at the BBQ N was a year older, but much bigger, adult sized. Cognitively he was still the kid in the gym at the birthday party who did not understand. Yet he was one step advanced this time: when he could no longer cope with the sensory input, he asked to leave. “Go Home?” I used my “first-then” story to help him understand that we would eventually leave the party and go home: “First eat, then HOME”. This satisfied him, but not for long. When we still sat and munched on our lunches, N began to hop up and down furiously. He was turning red, and he began to shake. I recognized a desperate coping mechanism, I knew it would escalate rapidly and I did not have much time to intervene.
I was detained by a family at the next table with 2 small girls who had been watching him with curiosity. When N began his anxious hopping, one of the girls said to me “what is wrong with that boy?” Without a chance to respond N came at me, striking me hard with his hand. “He hit you” the other girl said with concern. I replied “He does not understand…” Quickly I bid adieu to my parents and started to hustle N out of the room. There was not enough time for a diversion, in the absence of that, I had to get him out of there because the escalation would be rapid and immediate. Unfortunately I was not fast enough, and he began hitting me repeatedly and with obvious force as I led him out of the party room.
I know that some people were shocked by what they saw. What they did not see was that I got it under control as soon as we were out of the sensory overload environment. But the moment of social involvement was a sensory overload disaster.
Are Social Events possible for the family with a very autistic child? I have become pessimistic over the years. There are limited and very specific circumstances where N can successfully participate in a social gathering. If any of the following conditions are not present, then I would not attempt the event with my son:
- Familiar environment where N has managed successfully in the past. Preferably repeatedly.
- A quiet place accessible to the him, when he can escape and control/adjust the auditory stimulation in the environment. (Unfortunately N is not able to work an iphone or ipad with music. Some families have succeeded with this kind of escape that their child can control For N it has to be a physical escape from the sounds he cannot control).
- Ability to find perceived personal space. For any social venue, there must not be a perception of excessive or uncontrollable physical closeness. This tends to be more an issue when the venue is indoors. In this case, this year it poured with rain. At the BBQ everybody was forced to crowd into a confined indoor social area. Too many people in a relatively small space spells difficulty for those who have sensory challenges.
- A comfortable temperature. This year the day of BBQ was not just rainy but excessively hot and humid. The humidity pressed upon the air inside the room, and was amplified by the close proximity of residents and guests. The windows dripped with condensation, and we sweated to stay cool. For N it just fuelled his desire to leave the space.
- Visual Stimulation. Movement of objects within visual field of perception is comforting to N. I believe he is able to cope with a lot going on visually as long as there are not too many other competing sensory stimuli. So if items 1-4 are present then N can cope.
It is all about sensory processing. If it is not familiar, then the child needs to have some kind of control in order to direct attention to one or the other inputs from the senses. At the end of the day we as parents must assess what our child is capable of processing, and what we are capable of living with in response.