Thursday 2nd April was World Autism Awareness Day, and in the midst of COVID-19 we still needed to understand that there was a child out there who could not understand why schools were still closed on Thursday; why it was April 2nd and he was not joining others on a route march or float; why he could not go out and play in the park or have his teacher or caregiver come to visit in the afternoon as had been the usual.

 It was a Thursday, and he could not eat his favourite fried yam because the yam seller had also locked down due to low patronage. It was Thursday, and the ritual of going through Melcom before going home had been disrupted.

It was Thursday, and there was no midweek service and so mum and dad were home and the house just seemed more crowded than it should have been at 6 p.m. because churches too were closed. It was Thursday, and instead of the anime series that aired at 4pm, the TV station was airing a history lesson for primary 6 pupils.

It was Thursday, and he could not go outside to watch cars go by at 5pm as was the usual.

World Autism Awareness Day appeared to somewhat be overshadowed by Covid-19. However, for many families affected by Autism, the realities, tests and trials of autism stares them in the face even more in a lockdown.

There are no moments of escape, no caregivers or therapists to take over, no schools to give parents - especially mothers a break to catch some sleep or even eat their meals.

Siblings are getting overwhelmed with some of the behaviours that their brothers or sisters on the spectrum exhibit and wish they could just run away from it all. By the end of the lockdown, some siblings will silently wish that their brother or sister with autism did not exist.

Thursday 2nd April was World Autism Awareness Day and many parents wished the world could see what their lives have been like all this time and even more in this lockdown.

But it is not all gloom and doom because some children with autism in this lockdown will learn new skills; they will learn to tolerate their siblings and vice versa; some will begin to say a few words or point while others pick up on some crucial daily living skills.

Some parents will begin to reorganise their lives and develop a new and better understanding of their child and how their child’s needs evolve with time. Some parents will develop a thick skin to ‘extinction outbursts’ and some of the children’s negative behaviours will die off.

It’s not all gloom and doom, but the disruption in daily life can have dire implications for persons with autism spectrum disorders; the uncertainties can cause anxieties and those anxieties can cause fears that lead to the exhibition of behaviours that even parents may not understand.

But life is full of uncertainties isn’t it?

So how do we prepare our children with autism for these uncertainties? My suggestion is to occasionally disrupt the routine and talk through the new routine as it happens.

Keeping routines is good but slight disruptions every now and then increase one’s ability to better deal with disruptions when they suddenly occur. Rigidity in pattern and routines is not healthy but at times parents try to keep a rigid routine so as not to upset their child. While routines make life easy for all of us, remember that no routine is still a routine and it can leave us less productive than we should be.

Keep a consistent but flexible routine, for the child must learn that sometimes life happens. Does the child like apples? Find six different ways to eat the apples. Does the child like to run?

Try different types of runs and in different spaces. Does the child like to swim? Find other similar water play alternatives. Your child may like certain things more because of the sensory functions they serve. Explore opportunities to engage him in ways that fall within his sensory preference.

Lastly, play with your child and if there are siblings, play with all of them together so that no one feels left out. Encourage more social play at this time while still giving opportunities for your child’s need for time alone. ‘Alone time’ does not mean that there should be no eyes on the child. Keep your eyes on him but keep your distance so long as he is in a safe place.

To the parents of teenagers and young adults with autism, this is a time to remember and acknowledge that they are not the children they were yesterday. With each passing year, they have aged and their preferences for certain activities have changed.

Give them opportunities to equally engage; addressing them as you would have loved to be addressed at their age. Think of what skills they can learn to better survive and thrive.

Do not see in them a failed dream. But see in them fertile grounds for various opportunities. Let them speak to you with their eyes, their hands, their words, their smile, their talents, their likes, their fears, their tears and listen with an open heart so you can better direct their paths.

Thursday 2nd April was World Autism Awareness Day and even more, amid a Covid-19 lockdown, I salute every parent who fights through the strain of autism on family life and still pulls it all together the best way they know how. And to those parents who are struggling through the tears, know that it is okay, no one knows it all any way. Just pick your battles one at a time; one day at a time.

Dear Autism Parents, in this lockdown our arms are open to you as practitioners and parents who have seen much more. And though we cannot be at your doorstep like before, we can still give you much support. So, feel free to reach out to us in this lockdown, to speak out about your fears and to celebrate your gains.

We are because you are.

Wear Blue! Share a photo or two! We may all be locked down, but we must still raise Autism

Awareness!

Because beyond the 2nd of April, beyond World Autism Awareness Day, we know in our hearts and as a community, that every day is Autism Day!