This last month has been hard for all. In the UK we clap for our frontline staff every Thursday. We even had a clap for the Prime Minister to wish him a speedy recovery. One thing is true everyone is managing as best they can, many have shown the best sides of themselves. This is never more true than when you look at our children. Their whole world has been turned upside down and they are surviving.
I was especially concerned about this time and the effect it would have on my daughter. Young people with ASD, find comfort in routines and familiarity. Nothing about these times is routine or familiar.
So how as a parent of a child with ASD do you minimise the impact this time has on them. I am not going to tell parents the best way to work with their children, no one understands the child better than you. What I am going to do is share some techniques that have helped parents and myself.
If you have met one child with autism, you have met one child with autism. — Dr Stephen Shore
Explaining COVID-19 to a young person with ASD
It is a well-known fact that society finds comfort from information. It is why so many of us stay plugged into social media and watching the news. We want to know what is going on and we take comfort from the information. This is true even when that information can be quite scary. A child on the spectrum is no difference they will need information but in the right format.
When the time is right, both you and your child are calm, start an informal discussion. This discussion should take three parts. You might do this whilst doing another activity, face to face conversation can be very intimidating.
- Assess what the young person already knows. Schools may have been giving out some information. They may have read stuff on the internet or been watching the news for themselves. Assess what they already know and reassure them.
- Ensuring the young person understands the facts. People on the spectrum often have a literal way of interpreting facts. For example, the young person may have heard that over 70's are in danger and think all 70-year-olds will die. If they have grandparents in that age bracket it could be causing them distress.
- Prepare them for the future. The young person must know that this will not go on forever. Things will slowly go back to how they were before. It is also important that they know what the next couple of months will look like. What they can expect to see and hear. The fact that none of us knows when this isolation is going to end, can be torture. Reassure the young person, we are all feeling the same, regardless of our needs.
Whilst having this conversation I would concentrate on what can be done and what you will be doing. Be honest about the change in routine. Validate the young person’s feelings and opinions as they are important. Ensure you tell them that anxiety and stress are normal feelings, many of us are going through. Keep these small conversations a regular thing. Continually assess their feelings and anxiety levels.
Ensure that you focus your conversations on what can be done, rather than what will change.
Supporting a young person with ASD through isolation.
Isolation will change the young persons routine and schedule. Many of these young people will no longer be going to school and attending the same therapy. Even the small factors, of soap operas not being on television, may have a dramatic effect.
However, as parents, we can recognise that as one routine ends, we can start a new one. This routine can last for the duration of isolation. The new routine once accepted will offer as much comfort as the old routine, it will take time.
Whether you are on the spectrum or not, a routine will help anyone adjust to isolation. A routine or schedule gives us all a purpose. A reason to get up; to move onto the next task. This is better than sitting at home looking out of the window waiting to be released.
There are also aspects of a routine that you can keep familiar. Activities such as the time they go to bed; the time they get up; clothing and the food can all be kept as familiar as possible.
For us, food became an issue as we could not get the same food that she always eats. Ask for help if this happens. I have an amazing set of friends who all bought a little food when they could for her. We ensured we had enough for a month to keep her eating routine the same. After three weeks, her eating has not suffered and she has started trying new foods, something that would never have happened before.
The aspects of their routine that have to change you can prepare them for.
During isolation, exercise is extremely important. You must take advantage of the chance to go out, if you are permitted. This is a difficult thing for some parents, especially if you have younger children. The lack of social communication can make it hard to explain social distancing. You may also have the added anxiety of the child’s poor road skills to worry about.
This was a concern for us as our daughter has no road sense and a love of the beach. We live in a busy town where, even now, the roads are busy and the nearest beach is 20 minutes away. However, legislation states if you are a carer of a child with extra learning needs you may use your car and go out. You can use this to go to familiar places and safe places.
Parents I have spoken to recently have said that they have exercised, as much as they can. One mother told me how her son loved swimming, so they bought a pool and he relaxes in that every evening. Another told me how her son loves music so the house is always full of music. These small changes can make a difference to a young person.
The Autistic society has published articles about the fact that people with ASD may become more isolated. They have a team of volunteers that are creating online meeting places to socialise.
Write these activities into a set schedule. This could also help calm the young person. People who have ASD like to know what the day holds and what is next on their schedule.
0900 — Get up and have breakfast, chat about how you are feeling
0930 — Exercise, Either outside or in the house. Youtube has many video’s to help you exercise at home. Joe Wicks runs a daily exercise group for young people not at school.
1030 — Isolation journal. I wrote an article dedicated to writing an isolation journal. This is a brilliant way of encouraging your child to write their history.
1200 — Lunch make this process as similar as possible. If they are used to a packed lunch in their special box, then give them a packed lunch in their special box. Even these slight things will help reduce anxiety.
1300 — An activity of choice, this could be more exercise if needed. A puzzle or painting. It could even be helping to prepare the evening meal.
1430 — Quiet time, allow the young person to relax and have a time where there is no noise. If the family home is now busy and full of people it may be noisier than it was previously. This could be watching a film or reading a book. This could be in their own space or the family space depending on the individual. This will also give mum and dad a chance to take some time for themselves.
1800 — Dinner, again keeping this as close to the original routine as possible.
1900 — Follow your normal evening routine. This could mean a bath, computer games or watching television. Whatever is as close to your routine before.
People with ASD are not cold and unemotional. Instead, they lack the bridges that exist to build rapport and mutual understanding. They lack the emotional language to express their feelings.
We have been fortunate, as our little girl has taken isolation completely in her stride. She has shown no excessive behaviour and if I didn’t know better I would say she is enjoying the calm and seclusion of isolation. This will not be the same for all young people with ASD. Every young person is unique and individual.
People with ASD often pick up the emotions and stresses around them. Rather than discussing these feelings, they take them internally. These internalised feelings build up and can cause an explosion or meltdown.
Our frontline staff, are the heroes of this time, but so are parents every day of the week. It is our job to reduce stress in our children, regardless of their needs. These tips will help some of you achieve this. Overall be assured you are doing a great job. Make sure you work sometime out for yourselves. A happy parent makes a happy child.
Every Child Matters is moving an online magazine. Here you will get access to technical articles on teaching, working with SEND and strategies to improve development. In addition to this, it will provide a parents view of special educational needs. You can also join us on Facebook for chat and additional help or follow my parenting journey on Twitter.