Beyond the classroom: Understanding school anxiety for Autistic children

A parent and child exploration of school anxiety and how we've been tackling it

I’ve had a few requests to write more with my 11-year old daughter, Megan. This links to our first article on autistic masking if you missed it. I’m happy to oblige. I understand that enabling her voice to be heard provided an insight to the autistic experience which was helpful to others in better understanding the young people in their lives. It’s also been Neurodiversity Celebration Week, so it feels apt. And she was keen, so here you go…

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“My Autistic daughter LOVES going to school. She can’t wait to get there every morning and bounces in happily without looking back.”

Said probably nobody, ever.

School distress, school avoidance, and school refusal are common topics of conversation on the autism support groups and communities I’m exposed to. It has been a significant factor in Megan’s experiences to date too.

It really picked up when she was in Year 3, manifesting as tearful anxiety. Tears every evening in anticipation of the next day; more tears in the morning as the time for departing drew nearer. Separating from us in the school playground became somewhere between incredibly difficult and impossible for her. We attempted numerous strategies - was it easier if she was swept in by a friend, met by an understanding teacher, allowed to go in a different entrance, allowed to go straight to the library rather than the classroom? Sometimes we would sit with her in the School Reception area just waiting until she felt able to step over the threshold.

Then Year 6 came around, and something remarkable happened. Her year group were deemed ready and able to walk by themselves. We made arrangements for her to meet with some friends and make their way together. That first morning, it was me who was on alert. She was…well, fine. She just got herself ready, put her bag on her back, gave us each a hug goodbye, and strode out of the house pulling the door shut behind her. Deri and I frowned at each other in disbelief. Was this the same child we had spent countless tearful hours with? What had happened? Why was this so different?

Six months on and this is our new normal. There are days when she can’t do it and we drive her in an hour or so late, but they are the exception. And whilst there is much about school she finds tough, getting her in there no longer dominates our mornings.

So, what changed?

We’ve had some interesting and reflective chats about this. Megan gets why we are a bit baffled by it, and is interested to understand too. We can never be sure, but we’ve had a few realisations we think are significant…

1. Anxiety about going to school is only in part about what happens at school, and another large part about the people and home she is not with,

2. The death of her guinea pig and my response to it was a turning point,

3. If we can identify a specific worry, it is possible for her to process and rationalise it so it doesn’t dominate her emotional state,

4. It always was - and still is - about allowing transition time.

We will do our best to explain.

“But what if something bad happens?”

This is a Megan catch-phrase. I am definitely guilty of being dismissive of this question - “Nothing bad will happen, you’ll be totally fine”. When I started better exploring what ‘bad’ meant, the list of things she was genuinely worrying about when she went to school took me aback.

Many of the things I worried about were to do with school. I would worry about being moved to a new table, with people who aren’t particularly my friends, and they would be distracting. I don’t like it when people are too loud, or chaotic, and I worried that I might be on a table with people who are. I would find it difficult to have different teachers for different subjects¹. It was hard to know all these individual teachers when I only saw them once a week. It is hard to know all their different rules; what they don't mind and what they find ‘unacceptable’. I panicked about fire drills. Alarms and fire are two things I really hate or worry about. None of the teachers are told if it is a practice or not, so I have no idea whether it is real until the whole school is informed.

I also worry about home when I’m at school. I worried about the idea that home might not be safe, even when it was. I would worry that there would be a fire at home and things and people would get hurt or damaged. I worried about ‘bad’ things happening. I never really knew the exact definition of ‘bad’, but I remember panicking about my pets and if they would die or get injured while I’m at school. I also worried that family members would fall ill, die or get hurt while I was at school. I know it sounds extreme, but the ideas were real things that I worried about! The idea that something terrible would occur, and that I wouldn’t find out until after a tiring day at school, was something I would panic about often. 

Up until Year 6, I walked to school with my parents. In the playground, I would always find it difficult to walk into school and get separated from my parents. One of the things that caused this difficulty was the fact that home felt much safer than school did. At home, I knew everyone really well and I knew exactly where everything was. At school, I didn’t have that familiarity. As well as this, when I was at home I could see that everything was safe and there were no dangers; on the other hand, at school, I had no idea whether home was safe. 

There are things here that would never have occurred to me. And I think it’s notable that many of them were not directly to do with school. We had been focusing our efforts on what was going on there, and how to make it less overwhelming for her. I hadn’t thought she might be worried about the home and people she was leaving behind.

The dead guinea pig

I took to saying, “If something bad happens at home, I promise I will come to school and tell you”. I wanted her to feel less anxious about home and be confident that ‘no news is good news’.

Then, one day, I found her beloved guinea pig had died.

This certainly fell into the category of ‘something bad’. I was hesitant about what to do for the best. It felt a bit dramatic to arrive at the school and pull her out of lessons, but I’d made a promise. In my experience, the autistic brain doesn’t do shades of grey on this sort of thing. The potential consequences of breaking the promise were significant.

So I went to tell her. She decided to come home and say her goodbyes. She cuddled the guinea pig and snuggled it in some hay ready to be buried in the garden. And then she said she would go back to school for the afternoon.

On reflection, I think this incident was a valuable turning point. Because I’d lived up to my promise, I am now better able to give her the confidence that ‘no news is good news’. I have conviction and she has trust.

Learning to rationalise worries

I started researching ways to process anxieties, and had a very helpful phone call with a family support professional who suggested a worry book. This has worked really well for Megan.

My Worry Book is an ordinary notebook that I use to write down my worries. There is a special format though:

• Situation - who, what, where, when

• Worry - what if....?

• Prediction - what might happen?

• Intensity - 0 -10 (how big is the worry?)

• Type of worry - problem, fear or hypothetical?

• Likelihood of worry - 0 -10 (how likely is it to happen?)

• Seriousity of worry - 0 -10 (how serious would it be?)

• Plan - what can I do?

When writing out a worry, I follow this format. For example, this is a Sleep Worry.

As you can see, I wrote the likelihood as 1/6000 (which is slightly breaking the format!). Originally, I wrote it as 1-2. But, after discussing it with my Grandma, I changed it to 1/6000.

One thing my Grandma told me was this: ‘When you get one grain of sand on a beach, and throw it far away, how likely is it that you’d find that same grain of sand? The possibilities are the same for a house fire.’

This always pops into my head whenever I am worrying about fire. It really helps me! I am now able to tell myself how unlikely it is that anything bad - like a fire - is actually going to happen. 

Processing specific worries in this way appears to really help. Often they are incredibly unlikely to happen or not very serious, and the number scale highlights that. Sometimes Megan concludes, ‘I just don’t need to worry about that,’ and seems able to move on. This has helped reduce or remove some of her anxieties about going to school.

But I don’t think this is the only factor in the change we’ve seen.

Perhaps we just stumbled on a solution to an enduring problem

As I reflect now, it occurs to me that perhaps Megan has always needed a transition period between home and school. When we walked her to school, there was no space for an ‘in-between’. The things that came to help - sitting with her and waiting, allowing her to go to the library before the classroom - were creating a transition period. Although I didn’t see it that way at the time.

She talks now about how it feels to meet her friends to go to school, and it seems that they are creating the transition period. They are the in-between; not home, but not yet school.

Currently, I am finding it easier to go to school. I think that is because I am not walking with my parents anymore, I’m walking with my friends (I know that sounds a little strange!). For me, personally, whenever I walked with my parents I was taking home to school, not leaving it behind. But when I walk with my friends, it creates a gap between home and school. This helps because when I leave the house it doesn’t feel like school yet, just a walk with my friends. By the time I get to school, I’m swept up in the chatter of my friends and don’t even think about going into school, I just do. 

Sometimes people post-rationalise things, and they may not draw the right conclusions. We don’t present this as ‘a way to manage school anxiety’ because we may be wrong and, even if we are right, it wouldn’t work for everyone anyway.

This is just one true story, but sometimes stories help others reflect on their own.

If you are parenting a child who is experiencing school anxiety, I wish you strength, tenacity, curiosity, and understanding. I hope you know you are not alone.

1. Megan goes to an all-through state school which caters for children from 4 to 18. The primary phase benefit from specialist secondary teachers taking lessons such as PE, music, and languages, but this does mean exposure to more teachers and some who are less used to teaching younger children.