Continual Uncertainty

As a population we are all feeling anxious as we cope with continual uncertainty. We are in fact experiencing a taste of life on the autism spectrum, where uncertainty and unpredictability rules the day, with all information vague and ambiguous. The two things neurotypical people now crave, just like our autistic population, are accurate information and certainty of outcome, two things which are in short supply. One benefit of the pandemic may be a deeper awareness of how it may feel to experience life on the autism spectrum!

We are in fact experiencing a taste of life on the autism spectrum, where uncertainty and unpredictability rules the day, with all information vague and ambiguous.

As we begin to prepare for a cautious and stepped return to another kind of normal life, we need to prepare our autistic children and adults for another change. This is problematic in itself because so little in our life is currently certain, every future step dependent on the subsequent response. Our young people crave predictability and certainty and in this fluid situation we are unable to give them exact dates and times.

Social Stories provide social information that inform and reassure, filling the gaps left by a different interpretation of the world. A Social Story can therefore reassure that although timings remain undefined, there is certainty that we, their loved ones or carers, will deliver information in good time before any change happens for them. This is important for them to know and important for us to do.

Return to school

It seems likely that a phased return to school will happen soon. There will be a lot of change to become familiar with. For our children all of these changes will need to be explained and described with concrete visual information and Social Stories, preferably before returning to school.

(A chapter on transition Social Stories, with an example of a school transition Social Story, is included in my book, ‘Successful Social Stories for School and College Students’.)

It is not all negative however. Lockdown has brought positive change too. Many of our families have discovered that the slower pace of a life lived more simply, with reduced social expectations has been a relief. As we return to school some positives may continue for our children. Instead of returning from the quiet sanctuary of home after a holiday break to a full classroom and assembly hall, they will be returning to a quieter, less social atmosphere, and importantly not to a full week’s timetable.

Children who found the proximity of other children in busy school corridors, noisy classrooms, crowded assemblies and playtimes may actually find social distancing much more comfortable. Once one-way systems in school corridors are understood, our children may prefer the reduced noise and likelihood of others bumping into them.

many of the changes the population will have to embrace in the future may make school and workplace more autism friendly, as well as safer for all!

During this time people have had to change their way of greeting others and it has become normal not to shake hands, or kiss both cheeks in the continental way, but instead just nod, smile or say hello. As we face a new normal and the potential return of Covid-19 in the future these greetings will continue to be recommended for safety. How helpful that they have always been more comfortable for our young people. It seems to me that many of the changes the population will have to embrace in the future may make school and workplace more autism friendly, as well as safer for all!

Visual Timetables

Once you have more information from school about your child’s return, make sure they know what days they will be in school and what days they will be at home on a visual timetable displayed at home. This can be very reassuring. On return to school, take a photo of the entrance and exit they will be using, and place these on the calendar along with the time they will be entering and leaving school each day. Knowing that there is an end to an experience is crucial information to those who have difficulty making predictions. These times are likely to be different to normal, and building familiarity as quickly as possible with the new routine will be helpful.

Always put on the timetable anything you can find out that will be the same as before. If you cannot find out much, don’t panic, you know your child will have, for example, their lunchbox with their usual food in, and maybe a snack too that they know and like. A photo of this can be placed on a timetable and be a positive, familiar anchor point in the structure of the day. The child will begin the day at home with a familiar breakfast activity then return home and do another familiar activity at the end of the day and a photo of these two activities can ‘frame’ the start and end to the day on the visual timetable.

Remember that some of the activities that were hard for your child before may not be happening. So it’s important that they know that Assembly, or Games, or P.E. may not happen. This may be reassuringly good news!

School is unlikely to be able to give details of everything your child will be doing, but they will be able to say who the child can turn to for information at school. Their usual LSA, who would know when to tell them of change, may not be available with the resourcing changes. If this is the case, telling the child who knows what is happening helps them know who to ask, and practicing the question at home, ‘Whats next?’ enables them to do this.

Understanding the words people are using

Many of us are now familiar with the new vocabulary that has emerged during the pandemic. It is important that our children understand these new words. Without understanding the context, they may assume a different meaning that may be quite inaccurate, and even more frightening than the reality. On return to school it is likely they will hear more of these words and therefore it is sensible for parents to ensure their child has a good understanding, explained in a positive reassuring way.

It is always a good idea to ask the child what they think the word means first, to uncover their perspective, before sharing your understanding of the word with them. Use Social Stories to do so if possible, adapting them for your unique child. Notice that in each Social Story included below I always try to mention that most people recover quickly from the virus and only a few have to go to hospital. It is easy to forget to emphasise this, but putting the situation into perspective is really essential.

Practicing at home.

Understanding the reason behind social distancing is crucial if it is to be adhered to, so once understood, model a safe social distance in a way that is meaningful for your child in a fun way.

• For example, for a child interested in snakes identifying what snake would be 2m long could be his instantly recallable ‘long-snake’ social distance.
• For a child that loves his bed, perhaps the distance from the head of the bed, where teddy sits, to the foot of the bed where giraffe sits. This distance can then be labelled with a name the child decides eg ‘teddy-giraffe distance’.
• Use favourite toys eg teddy bear and place it on a marked spot and place another 2 metres away and have the teddies have a safety ‘lesson’ with the child as teacher.
• Mark the sitting room floor or garden with cushions on the floor, 2m apart and practice sitting on them to read a story or watch TV.

The idea is to make social distancing another part of fun normal life and not scary!

Modelling and reinforcing the handwashing technique is crucial. Use the cocoa powder technique I first described in the earlier blog to refresh how well your child is currently doing in washing hands. Children are always touching their faces, and it will be almost impossible to stop them doing so, so effective handwashing really is important, and is a good habit to establish for a healthy life! Reward them when they remember to do it, and praise any improvement in technique. The more we all learn and practice this, the more automatic it will become. Effective handwashing can prevent a virus on the hands from entering the body and causing infection. This is so important as we all return to touch and use surfaces that have been touched by others.

One-way systems may be in place on return to school where previously there were two-way systems eg in corridors. Make sure they understand the term and demonstrate to your child using lego figures or toy cars how this works, or use figures from their special interest. If you have a garden, start up a one-way system, with home-made signs and move around it.

Face masks and visors may be more in evidence at school. These may be very scary to children on the autism spectrum. Describe what the term face mask means using a Social Story (link) It is important for them to be reassured the person is the same underneath when the face mask comes off. Showing how a visor made from a piece of see through plastic works and that you are still the same underneath may help. Play with other masks for fun in dressing up as favourite characters, just to make the idea less scary. Teddy or a favourite toy could wear a home-made mask or visor too?

By making what is unfamiliar familiar we can dispel fear and inaccurate assumptions. There is a great deal that parents can do to help their own children in the transition back to school, whenever it occurs, and preparation can start now.

Main photo by Michael Dziedzic on Unsplash, additional image by Sean Thomas on Unsplash