Like many autistic children, our son doesn’t do well in crowds. He’s at his best one-on-one and anything more than that tends to lead to sensory overload. This is particularly challenging when it comes to family get togethers. He enjoys wandering around the farm with his Granny or plodding around the retirement village with his Grandma. He likes to play outside with his Granddad. During these visits, he prefers that his mum and dad stand back and not join in the fun, so that he and his grandparent can spend time just the two of them. Anything more than that, and he either flatly refuses to participate, becomes very distressed or wanders off. The times we’ve tried to make this work lead to an anxious child, night terrors and days of recovery. This is even true in terms of our own little family unit, with him preferring to interact with one other person at a time. If his sister is playing with him, he likes us to leave them alone. If I’m with him, he prefers his dad do something else. If his dad is with him, he sends me off to bake cookies! It’s been like this since he was a newborn, when family visits meant a sleepless night of crying and days of an unsettled infant.
My husband and I are lucky. We know what it feels like for our son because it feels the same for us. We are both autistic and one of our biggest challenges is communicating in groups. Invites to group events, even with people we care about, cause us a great deal of dread. Recently, my wonderful father-in-law invited us to a family picnic, complete with 6 relatives. This kicked off the usual process that we undergo when we get an invite somewhere. We took a risk and emailed him an explanation as to why we can’t go. We’re experimenting with honesty, in the hope that we can help our family’s to understand that our lack of participation in family events is not rudeness or a lack of caring. It’s necessity. My father-in-law’s gratitude for our honesty was a gift. He suggested I share the sentiments in our email so that others with autistic children or family members might better understand why family events are so challenging and why refusing them is sometimes the best way forward. In that spirit, here’s what I explained.
The reason we can’t come goes beyond just not enjoying get togethers. I wanted to explain the process to you of what happens when we get an invite of this sort. And we desperately don’t want you to think we said no because we don’t understand what family get togethers mean to people, especially to parents, who like to see their kids all together.
When an invite like this comes through, first there is panic. It’s a sort of flight or fight response that kicks off, completely on its own, without having to think about anything at all. The thoughts haven’t come yet, it’s just the feeling that happens first. Once you’ve calmed yourself down enough, and this might take an hour, you start having a highway of thoughts, rapidly sending memories and messages of all the times you’ve felt uncomfortable in this situation before. Suddenly, a simple invite has got you in a state of emotional overload. And you’ll feel that until the event is over. Usually about 2 days after it’s over.
If you go, you can’t really think very clearly because you’re in a state of physical discomfort and sensory overload. You can’t talk and you can’t really take in what anyone is saying. With so much sensory information coming in, you can’t read people’s expressions and given that non-verbal communication is essential for receiving a message correctly, you pretty much have no idea what’s going on. You try and focus really hard to make sense of it all but your brain goes into survival mode and this might mean that it spaces out and shuts off. You find your eyes staring off into the distance. You don’t want to look at people because it’s all too intense.
The main thought is around how to escape. You don’t enjoy the company of those around you, you just feel a very strong sense of aversion. Even though you may care for them greatly. It’s horrible. It’s made worse by the fact that everyone else seems to be enjoying the experience, you don’t know how they’re doing this, you know you can’t, and you feel hopeless and broken because you can’t.
You can’t change this process. We’ve both tried. It just is. What you can do is allow it rise and fall without doing anything to make it last longer. The more you try to push the feelings away and soldier on, the stronger they get. Aversion is like this. It gets louder the more you try and stuff it down or push it away. So you acknowledge the rising feeling. You pay attention to it and remind it there is no danger here. There is no need to panic. Although you feel unsafe, there is no mammoth chasing you. When the highway of thoughts come, you try and sit with them, letting them exhaust themselves without adding the narrative that fuels them. Self judgement is like kindling, it makes the panic grow. Instead, you have to allow the full catastrophe to unfold and try and stay calm inside the storm until it subsides. It can take days. If you go to the event, the experience becomes much, much worse and lasts much longer. It might take a week until you feel centred again.
This is what it’s like for my husband and I, and we think even more so for our son. We can manage about an hour of a one on one visit from a few people, preferably one at a time, but that’s it. Anything more than that, and the process I described above kicks off. We’ve both been like this since as long as we can remember and we don’t imagine a time that this will ever change. If it does, well, that’s great. Life would sure be easier. But life is ok just as it is, so please understand that family get togethers are not possible for us.
It’s taken my husband and I a long time to accept this aspect of our neurology, to stop trying to change it and importantly, to put an end to feeling like we are flawed when it comes to being with groups of people. Can you imagine what the process above might be like for a young child, who isn’t yet able to understand what’s going on for them in groups? Who feels the full force of the panic and doesn’t know how to sit with it and let it exhaust itself? Who might have parents who don’t understand and try and force them into situations that create so much anxiety? It’s overwhelming on every level. Traumatic even.
If your child seems negatively affected by group get togethers with peers or relatives, please consider honouring their feelings and allowing them to make connections in a way that works with their natural neurology. Consider organising visits with one relative at a time. One-on-one interactions will likely lead to deep connections with family and friends and help them to feel the beauty of family without the anxiety of overload. This might mean Christmas and birthday visits are spaced out over a month, with quality time with each relative scheduled in. This is obviously different to how our culture typically celebrates and you might need to advocate strongly for your child if you face resistance or are not understood.
Communication is done differently by all and the bonds of family are built best in ways where people are afforded the respect to be exactly who they really are.