Coping lockdown with Autism

For most people, the Covid 19 crisis is an unsettling, confusing time. We are going through the time, when the world economy is falling apart, the GDP is the lowest at a world record level, the survival, health, existence became the bigger questions to find suitable answer.

Who is having the time to think and understand how much challenging it is to comprehend the virus and the devastation that it can cause, for the differently wired and neuro-developmentally challenging brain (of course there are exceptions) and make follow the guidelines and protocols! Of late the news papers are a buzz and are coming up with theories, predictions and the challenges depicted by renowned psychologists, paediatricians, consultants working with people with autism during this lockdown period.

We thought of going little more deeper and we interviewed the families, specially the mothers to hear and understand their untold stories of ongoing experience of this lockdown. We have targeted population with autism of different age group and disability conditions to get a larger perspective, because every story has its own unique experience to share…

“Lockdown from my perspective”

In the words of a mother of an adolescent girl with autism, “Lockdown in a sense brought restriction to all the functioning that was used to be ‘normal’.

Lockdown came with an element of concern of safety, hygiene also. It reached in the sense of paranoia in the subconscious mind, where the mind starts questioning at every single thing; is it virus free? Is it disinfected?

It cut the family off from socialising, made restrictions on physical activities outside the house.” The mother also shared her experiences how it was challenging at the very beginning months for her daughter, why it is not safe to step out, not even for a walk or why the parks are closed and the favourite car ride is also under curfew.

As generally for us this unusual precarious pandemic ambiance has changed our lives completely. The experience is completely new for our generation, we are not from Spanish Flu era, and as we are without much options, to keep ourselves safe from the virus, we had to lock us down for our own safety.

For the child with autism, where we try to bring every new learning at a tangible stage, to make it perceive, this time; picture stories, cause and effect talk on corona were the only options left to the parents to restrain the person with autism from making attempts of going out from home.
“I am in jail” was uttered by an adult boy with lot of frustration, when the mother asked him to express his feeling about the situation.

This boy is a quite independent person with autism, who loves to go to his training centre and looks forward to this outing, where he feels, he belongs. Last two and half months have taken out that privilege from his life. This struggle is multifold and multifaceted for people with autism.

“My biggest challenges during this time”

“How to keep him engaged meaningfully throughout the day, how to channelize his energy?”,

was the biggest concern for a mother of six years old boy with autism. “He wants to go out, wants to run, freely in the park, swim, play. He is not able to cope with the physical restrictions to be completely indoor all the time. His tantrums, his behaviours, his meltdowns are overwhelming. This takes a toll on us as a family”.

“I am afraid she’ll lose her social skills”

Autism by nature of the condition causes social distancing. People with autism are already living in a world of their own. The physical distancing which the Covid 19 has put on us is exaggerating this condition. Parents fear the social skills which the child had learnt through therapy should not get regressed, as we are confined in our homes. Children are missing important social skills which they picked up in school by interacting with their teachers and their fellow classmates.

If we take out the words like ‘therapy’, ‘social skill’, and try to understand the simple connotation of the relationship of school or engagement centre with a person with autism, we will see it brings sense of belonging, a place equally full of warmth and affection along side of home, a relationship, a community which they slowly develop with, other than parents.

The group sessions, playing games together, circle time, eating together, waiting for one another, taking turns, standing in queue, can get enriched from being in a functioning group. This lockdown has put a halt on these experiences.

Flip side of the lockdown

Some parents have shared the gainful insights of the lockdown impact on their child. “My daughter has improved tremendously by learning and exploring digitally”, mentioned by one parent. Another parent feels, “I have been able to engage more with him and his spontaneous speech though little seems to have improved”.

One parent has effectively utilised the situation and feels positive thinking that, “She got to spend quality time with her family. She could learn so many things by watching her elder sister.” Another mother thinks this situation came as blessings. “ My daughter learnt many house chores she was so dependent on our housemaid before”, and the mother feels this time, she is getting independent in many house skills.

Lockdown opened the way for online therapy and it got its momentum, it was a boon to the kids during this time. Special educators, therapies and institutes were quick to get this across, this made therapies accessible at home.

The digital medium was the only best choice left under these circumstances. Parents became the shadow teacher to assist the child from their homes. As the classes unfolded, parents got to access the Individual Education Plan and understand the whole special education therapy of their child. They were able to understand how ordinary household items could become resource material and teaching aids. At the same time gaining knowledge on how to keep the children meaningfully engaged.

Some parents also voiced out that the therapies could come in a video format to equip the parents to work with their children in a flexible time frame. Some parents felt along with academics, the focus can be on the domain of life skill and they recommended to get the virtual feeling of being in social group while taking sessions online or through video.
Though the online therapy was working for a section of the population of children with autism, few were unable to adapt to the digital medium. Parents insist to get the therapists physically started as soon as possible following the complete health guidelines by the ministry of health. As children with autism need structure intervention by the therapist all other alternative online therapies can only be a stop gap arrangement.
As we probe to understand the struggles of children it is inevitable to think what could the family be going through this as a whole.

“Fear of catching infection”

Many parents had the fear of what would happen if they would catch the virus or if their autistic child need to ever get quarantined or admitted in a hospital. The autistic person has communication difficulties. That means, it’s harder to understand what is going on in the first place.

If the family member gets infected and had to move to an isolated location, there is no specific answer to “who would understand and take care for their child who is so dependant on the family?” The fears are real and frustrating as well, as no solution is in the horizon.

And this is not a mere fear, this incident happened with a family which came in the news, where both the parents were asked to be quarantined at the designated place, with no definite answer or solution provided for their autistic boy who is totally dependant on his parents. The relatives of the family refused to visit and take charge at that time due to the fear of infection. Many parents shared they would like the government to think on this and have a plan to give social security to this community in case they were infected with Covid 19.

“Government start thinking about us”

Government has started talking with policy making authorities to plan the reopening of schools for all children. Parents of special needs feel that it is not going to be similar for the children with special needs as many cases, the children are having poor sense of self-hygiene and low immunity. There is a need to think and give special attention while making the protocol for the special schools or the schools with integrated set ups.

FINANCIAL FEARS

The lock down has brought an indefinite closure in many work places. Some parents have lost their jobs and businesses have come to a halt. The financial insecurity has lopsided the sailing boat.

Some parents seem to struggle to make ends meet. Parents are now wondering how to strike a balance in giving therapies and also maintain the financial budget of the house. Many unclear questions and fears have surfaced.

A parent spoke about his decision of stopping the school for his son with multiple disability, as he lost his job previous month. The mother is trying to occupy the child and work as much as possible and the parent are waiting for the favourable time to get another job when he can start the therapies again. When we asked about the continuation of school of the sibling, who is neurotypical, the response that we got, was different.

The parent are trying to accumulate fund and trying to keep the admission active for the sibling as it might be difficult to get admission again in good school for him. This very well depicts the position of the child with special needs in the family, where there is not enough social security and the parents need to provide everything for the child with special need. This kind of situation, makes the parent think and take decision in favour of the neuro-typical child, though the special child needs more support.

Being positive is the essence of a special parent

What is amazing about a parent with special needs child is that the rough sea just seems to make them tougher. When we asked them to give a message to the fellow parents, such wonderful thoughts came out which are equally motivating and full of zeal.

“Be positive, believe all that happened is for good. Stay safe and keep your children safe”
“Never to lose hope and keep motivating each other”
“ In these times don't be too rigid and try out new things, one of it will click for your child”

“If you feel depressed or lonely, seek professional help, share your concerns, speak to a therapist if you need help for your child. Spend time to learn something new, keep yourself engaged. Join parent community groups on social media, learn from others sharing and also you share your knowledge. Look at things in a larger picture and derive pleasure in doing and learning.”

“Every parent will face different challenges but its all in our acceptance of our child, finding ways to bring out the change in ourselves to help our child improve in all areas. Do not lose hope in Almighty. We are the special chosen parents. Have faith in him and ourselves”. Cover 19 might be here for a bit too long, let us learn to live with it.