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An autistic journey through the confusing world of language

A parent’s account of supporting regulation

We realised quite early on in our son’s journey through school, that asking him the traditional default question after school, “Have you had a good day?” was not a good idea! His response would always be one of two things; either a clear “NO”, followed by a shutdown, or an intelligible sound accompanied by a violent display of rage. And yet, when I saw all the other parents doing this each day, I felt it my duty to continue this cycle each day, despite the inevitable outcome.

Alongside our amazing Autistic son, we have two beautiful neurotypical children; one older, one younger. When I finally decided to stop the almost pantomime act of ‘the after-school question’, I felt a guilt for taking this away from my other children. Our eldest came home one day and said, “Why don’t you ever ask how our day has been anymore? Don’t you care?”

The pain I felt from this question was reflected on his face as he asked it and I explained to him that yes, of course I care!! I care so much about how your day has been!

He has always been wise beyond his years and understood my explanation of the situation as soon as I explained it to him, but it was at this moment that I decided that we were not going to miss out on sharing any of their daily experiences again.

So, I needed to ask myself two questions. Firstly, what word/ phrase/ question is it that provokes this negative response from our son. Secondly, what is he feeling in this moment and why? And lastly, how can we find a way to avoid making him feel this way but still get the information we want from him?

The first one took some unpicking. It turned out to be the words ‘did’ and ‘good’. ‘Did’ implied that the answer I desired was either yes or no. If someone asked you ‘Did you go to the shop today?’ or ‘Did you save any pizza for me?’, the answer will either be yes or no.

Our son has many traits that are shared with those who identify as having a demand avoidant profile. For him, asking him any question that requires one of these two answers leads him to lean towards the negative option automatically and subconsciously as his first response. So, we had to ask ourselves, did we need to know the answer to this question? If he had said yes, would this tell us what was good about the day? Equally, when he says no, does this help us identify why it was not positive for him? The answer was no.

The word ‘good’, it transpired, meant ‘holding hands across the road’. This may sound odd, but from his perspective he thought back to when he had heard me say that he had been good. Our son becomes very dysregulated when he is near roads, so when he agrees to hold my hand when we cross, I tell him all the way across that he is doing a good job and is a good boy. So of course, when I ask him if he has had a good day, he asks himself whether he has been told that he has held hands across the road nicely. As this doesn’t happen during the school day, the answer will always be no! So, we had to take it right back, sit down with him and explore the concept of good. We looked at the different reasons people used the word and what that could actually mean for him in a variety of situations.

In terms of what is happening to him, we turned to scientific research. We found many studies that highlighted the link between so-called brain fog, autism, anxiety and decision making. We realised that by asking him this question, we were arousing his anxiety levels, causing either sudden bouts of brain-fog (or mental shutdown) in order to cope with the decision making and therefore, ultimately, distress.

By creating a body map with him, we were able to identify that our son experienced ‘a big headache’ or ‘heavy eyes’ as soon as he was faced with a question that he had either not practised and rehearsed an answer to or did not have a clear idea of what he was being asked.

The final question was the tricky one, of course. How do we bring back the experience sharing moments into our day as a family?

The answer was, as it so often is, provided by our son himself. One day, he came out of school following a forest school session, where he had been allowed to cover himself in mud and chop logs! He had a huge smile on his face and said to me, “Today’s a real 8!”

Confused, I asked him what that meant. He said, “Tuesday was a 3 because of basketball but no art and today’s an 8 because of the mud and logs.” And I realised that he had been internally rating his days out of 10 all by himself each day, comparing each day to previous experiences where he had particularly strong feelings and therefore high or low numbers. Genius.

That day changed things for us in a big way. It’s taken a while to perfect the system, but now each of our 3 children rate their own day out of 10, using their own individual experiences as benchmarks for each grading. If the number is 6 or above, I ask them to name one thing that made it higher than a 5. If it is 5 or below, I ask for one thing that is higher than a 1. For our autistic son, I always remind him of the benchmarks, depending on his number. For example, today was a 7. So, I asked him for one thing that meant he was higher than when he found a bird’s egg on the school field AND got to do extra art, because I know that he rated that day as a 5.

It’s often the default to gravitate towards the negative parts of their day, so I don’t ask them about those. Not because I don’t want to know, but because I know that if it is something that has upset them enough to still be troubling them, they will invariably share this with me anyway. But by highlighting the positive parts of their day first, they have the ability to weigh up the day as a whole and have a true reflection for themselves of how ‘good that day actually was for them.