It’s Autism Awareness Month and for the 2.8 million people in the UK affected by autism, including children, adults and their families, the lockdown is incredibly tough. Along with uncertainty, upheaval and confusing messages, this vulnerable group of children are more likely to suffer long-term mental health problems as a result.
Social distancing is a concept we are all coming to terms with, but for autistic children these new rules can often be especially challenging. Rebecca Sterry, an autism researcher says; “Many autistic children will struggle to understand the changes, or to adapt to them. Changes to routine and what they can and can’t do may be particularly difficult for autistic children who need things to be predictable in order to feel calm and safe. We know that uncertainty is a cause of major anxiety for autistic children and adults, and the situation right now is extremely uncertain. “
Younger children may struggle to understand why they aren’t allowed to go to their favourite places. Kirsty Roberts has an 11 year old boy with a diagnosis of Autism and Global Development Delay. She explains; “[My son] asked to go to the park today but trying to explain social distancing to him has caused a meltdown. Fortunately the school is supportive and have sent a Coronavirus social story home. That helped to talk to him about what is happening.”
Parents of autistic children often have no choice but to get creative with their parenting methods as what works for neurotypical children will not always be helpful for them. Tony Knight has a 10 year old son, Jamie, with diagnosed Autism and Dyslexia. He has found a solution that taps into Jamie’s special interests, while minimising the panic that may be caused by sharing too much detail. “We gave him a job which kept him distracted. His job was pushing the mini trolley and being a ninja secret agent, meaning he had to avoid other people.” Giving the child a job to do, or making it into a game is a good way to give the child a sense of purpose, prevent sensory overload and help them to focus.
Coronavirus has forced us to have conversations we would rather not have, and we all must weigh up the desire to protect the child from upsetting information, against the need for them to understand the importance of what’s happening. “Any child can obsess over the current pandemic, it is a worrying thing for many of us” explains Rebecca. “Explaining the pandemic and answering any questions or worries your child may have is important. Holding back information is not helpful but limiting their access to the news may be a good idea.”
Children with autistic spectrum disorders tend to be more sensitive than other children and worry about things others would brush off quite easily. Tony tells me that his son becomes very distressed about the situation and is very upset that he is unable to see his grandparents who are self-isolating after making an emergency trip back from the US at the time of interview. “He currently asks about them 3 or 4 times a day and we have set up regular video chats so that he can be in contact with them.”
Disruption to daily life is proving a challenge for everyone during lockdown, but for autistic children for whom routine and structure are often vital for managing stress it can be overwhelming. For Tony, preparation was key to coping when his son Jamies school closed. “As we were able to take a look at the precautions other countries were putting into place, we decided to tell him there was a chance he would not be able to go to school. This lessened the impact on his routine being disrupted and we further implemented homeschool to help him to cope further.”
Rebecca is keen to stress that parents shouldn’t be too hard on themselves. “It is understandable that children will struggle with changes to their routine so don’t worry if they have bad days. You need some structure, but also some flexibility, you will not be able to recreate school at home so don’t try to. Be kind to yourself and give yourself some breaks too!”
Panic buying has led to empty gaps on supermarket shelves. For most households this is frustrating, but for a child with autism it can cause meltdowns and a great sense of anxiety. Kirsty has found this a challenge. “It’s been hard trying to get the things [my son] usually eats. If it’s not in the shop, I won’t buy the same thing with different packaging, he knows it’s different. He’s had to go without. If only people would stop panic buying, it’s worrying times.”
A child on the autistic spectrum may notice a drastic difference between similar foods that most would barely notice. Rebecca explains; “It is extremely common for autistic children to have limited diets, which isn’t going to be easy at this time. In some cases you may be able to offer close alternatives and explain why the other items are not available. Using picture cards may be helpful to show a picture of the one thing they can’t have, but what they can have instead.” She goes on to advise; “At times like this, people are more than willing to help out, so do a shout out on your social media, or in a local community group, you’ll probably be surprised by what people have in their cupboards or can source for you in the shops.”
If you are struggling with any of the issues in this article please visit https://ndsa.uk/forum/threads/how-are-people-coping-with-the-crisis-lets-support-each-other.51/ for advice and support.
For parents, the National Autistic Society have gathered a range of easy-read guides and social stories that can help explain Coronavirus and the changes happening in the world. https://www.autism.org.uk/services/helplines/coronavirus/resources/helpful-resources.aspx
If you are caring for someone with high support needs you may find advice from the Social Care Institute for Excellence useful. The link contains a wealth of visual and easy-read resources for parents and carers specifically for persons with autism. https://www.scie.org.uk/care-providers/coronavirus-covid-19/learning-disabilities-autism/care-staff
You may check this advice from The Royal College of Occupational Therapists about staying at home https://www.rcot.co.uk/staying-well-when-social-distancing
Published with kind permission from Neuro Diverse Self Advocacy Forum – http://ndsa.uk
By Lucinda Herbert