My five (almost six) year old daughter is many things. She is clever, funny, kind, caring, determined, adventurous and beautiful. She is also pedantic, infuriating and prone to almighty meltdowns. I suspect that many parents would describe their children with pretty much the same words.
But my daughter is a little bit different.
It is looking increasingly likely that my daughter is autistic.
She has always been a little bit ‘odd’ but I have never thought of this as a negative. I’m proud to say that I am pretty odd myself. But as my daughter got older, her differences began to show more and more. Six months ago she was referred for assessments, and more assessments, and more assessments. We are now stuck in the diagnostic limbo that all parents of autistic children and possibly autistic children will know well.
Six months ago, I knew next to nothing about autism.
Now I know a lot.
Assessment is a very long process with huge waiting lists and I am the kind of person who likes to know. So I read. I read books, articles, and blogs. I attended ‘real’ courses and online ones. I joined Facebook groups and signed up for support services. I absorbed everything I could find about autism until my life felt hemmed in by autism and I had to stop before I drove myself mad.
I learned that my daughter constantly puts things in her mouth because of the sensory processing differences which drive her to chew. I learned to provide her with appropriate things to chew and encourage her to use them instead of whatever she found to hand. I learned that her diet is likely to remain very restricted, at least for the time being, and I learned that that was OK. I learned that she doesn’t have ‘tantrums’, she has meltdowns. I learned that these happen when she is overwhelmed and anxious. I learned that she asks the same question over and over and over when she is anxious and trying to stay in control of herself and her surroundings. I learned to (at least try to) stay calm when she asks me what time it is and what day it is for the 30th time in 10 minutes. I learned about how autism is different in girls. I learned about ‘masking’ and how exhausting this is.
I watched my daughter struggle with friendships at school. I listened to her asking why she never gets invited to other children’s houses to play. I watched her frown and dried her tears as I tried to explain yet again that she can’t expect other children to always play the way she wants them to play.
I realised just how little eye contact my daughter makes with others and I wondered how I had never noticed before.
I learned and watched and realised such a lot over the past six months. I felt that I was starting to understand my daughter’s behaviour better and this has helped me to help her.
But I still didn’t feel like I understood my daughter. I try, but I just can’t see the world the way she sees it. She often lacks the vocabulary to describe it to me. With or without autism, she is only five.
Then the Covid-19 crisis kicked off and I think I had an insight into how the world feels to my daughter.
It didn’t feel good.
Three weeks ago schools in the UK were still open. But the news coming out of Italy was horrifying. My husband and I watched with increasing fear and alarm as the death toll in Italy rose and rose. On the Friday we expected to hear that the UK schools were also closing. But that wasn’t the message. The schools were staying open.
This didn’t feel right to me. I didn’t want my two children in school. I wanted them at home, with me, where I could see that they were safe. My husband had already been told to work from home and all my work had been cancelled. How could it be right for the children to keep going in? How could that be fair on the teachers and all the other school staff? How on Earth was our daughter going to cope with the inevitable disruption to the school routine that week? Routine keeps her grounded and without it her life is difficult.
With all my work cancelled for the foreseeable future we could manage with the children at home. So we started thinking about keeping them off even though the school was open. All weekend we debated this and by Sunday evening we were no closer to making a decision. The government saw no problem with the schools being open so surely we were just over-reacting. I texted friends to see if any of them were taking their children out of school. They weren’t, except for one who has an ‘underlying heath condition’. So I must just be over-reacting. What if we kept them at home and they missed something important. What about my son’s friendships – he has a wonderful group of friends and he loves them. Was it fair to keep them at home?
But it still didn’t feel right. Nothing felt right.
Round and round in circles I went, unable to make a decision. I felt anxious to the point where I couldn’t think straight and I couldn’t focus. Anxious about the situation, anxious about all the things I couldn’t control, and anxious about the fact that I had to make a decision but I just couldn’t. I looked to the people around me, hoping that they could show me what to do, but the things they were doing just didn’t sit comfortably with me, they didn’t make sense to me.
I have never felt so paralysed in all my life.
I couldn’t understand the situation. I couldn’t get it into perspective. I couldn’t understand why my friends weren’t having this difficulty. I had no idea whatsoever what the right thing to do was. I couldn’t concentrate. I couldn’t decide.
In the end, we kept the children off school and I felt so much better for just making a decision, right or wrong. I still don’t know if it was the right or wrong thing to do. Who knows, and really who cares. I think so much of parenting is about trying to make the right decision for your own family and respecting those who make a different decision.
What does matter was the insight that weekend gave me into my daughter’s daily life.
My daughter struggles to manage her anxiety. She is anxious about all sorts of things that her classmates take in their stride. She is anxious about going into school every morning. She is anxious if her routine changes. She is anxious if the lunch hall smells strongly of food. She is anxious if her pasta is not the ‘right’ shape. She is anxious when she doesn’t know what the ‘right’ thing to do it. She is anxious to the point that she bites her fingers until they bleed.
She is anxious like I felt anxious that weekend. But for her this anxiety is a part of her life all the time.
My daughter looks to the people around her to help her understand what she should do. But often those people don’t make sense to her and that just makes her anxiety worse. That weekend I wanted my friends to tell me what I should do, but they couldn’t, it was a decision I had to make myself.
I don’t know if what I felt that weekend is really how my daughter feels as she tries to navigate a world which doesn’t always make sense to her. But for the time being it is my best guess. I do know that it felt horrible. I do know that I don’t ever want to have to feel like that again. I do know that I don’t want my daughter to have to feel like that either.
We cannot protect our children from all the things that will hurt them in their lives. We can’t always take it away and make it better.
But a little bit of understanding can go a long way and I will never forget how I felt that weekend.