The following blog post is inspired by an interview with Dr. Ann Ozsivadjian and Dr. Marianna Murin, which you can listen to on our podcast. In it, they acknowledge the immense difficulty of the present time, while giving parents of austic children hope and practical tools to support their children and themselves.
Life has changed for us all. The shift hasn’t just thrown us off balance, it has removed almost every bit of firm ground we used to stand on. For parents with autistic children, the challenge can feel overwhelming.
“If your child eats only one kind of rice cracker and only one kind of yogurt,” says Dr Murin, “and you see them disappear completely from the supermarket shelves, it understandably raises the level of any parent’s anxiety to an entirely different level.”
Every child and young person is struggling with disruption but for those on the autism spectrum, even minor changes to routine can cause distress. And as we know, there have been an endless stream of changes to routine recently.
The usual strategies for helping our children are to create a sense of predictability and clarity - but now so much is uncertain and unclear. There are still ways to manage anxiety and maintain structure though, we just need to approach things a little differently.
Dr Ozsivadjian advises allocating time for worrying so that our children know their feelings are validated - and so they don’t treat the entire day as ‘worry time.’ For the same reason, it is helpful for parents to limit the amount of reassurance-seeking questions they answer.
Even for us as parents, it is healthy to keep coronavirus conversation separate from the majority of our day. It is important to keep abreast of the facts - checking the news once or twice a day and then talking through our concerns can be helpful. But it is good for our wellbeing to spend most of our time distracting ourselves from current events, focusing instead on something useful or enjoyable.
Since normal routines have been so disrupted, drawing up a new schedule with our children can help them to adjust their expectations. If your child is younger, you could make this a creative activity, using colours and craft materials to keep the process playful.
Regarding education at home, Dr Murin emphasises that the message to parents of autistic children is clear: no one expects you to do anything.
“We should be in crisis management mode,” she says, adding that our focus needs to be our physical and psychological well being. “Your children will not fall behind. There is an entire contingent of children and young people in the same situation.”
Even adults are - in a sense - falling behind for a while. Everyone will have time and space to catch up when this situation has passed.
It’s important at this time for parents to lower their standards. We cannot expect ourselves to be as capable as we would be in normal times. Dr Murin mentions how, as a public speaker, she has had to expect less eloquence of herself. Once she let herself off the hook, her anxiety reduced and she was able to speak more freely. If we can accept our limitations and show empathy towards ourselves, it will also be much easier to give empathy to our children.
In fact, right now we have the chance now to learn empathy for ourselves and our children. All children and young people are experiencing a wide range of emotions. From anxiety to disappointment and from frustration to a sense of loss. And the most important thing a parent can give is a listening ear and validation.
“It’s also essential for parents to acknowledge their own emotions,” says Dr Murin. “You don’t have to hold everything together all the time.”
Now that their social circle is so suddenly smaller, your child may expect you to play the roles of every missing person. “You must be honest and explicit with them,” says Dr Murin. You will not be able to be in all the roles of teacher, learning assistant, playground supervisor, all while providing hot school lunches.
This is a time where something has to give from all ends: expectations, boundaries, rules. But as long as we are setting aside time for our wellbeing and our child’s, we’re doing what is important.
To learn more about how you can help support your child in this unprecedented time, listen to our full interview with Dr. Ann Ozsivadjian and Dr. Marianna Murin, contact us for a friendly and confidential chat with our experienced triage team on 0203 326 9160 , or visit our autism hub.