There are many individuals on the autism spectrum in our communities right now.
You and I both know at least one of those children.
It could be someone in your child’s class at school. It could be your three-year-old niece or nephew who doesn’t talk in complete sentences but can recite from memory the license plates of everyone in the family. It could be the child you see screaming during a marriage when the fireworks go off. It could be the child of a best friend. It could be your child in the future.
How you can help
As a friend, family member or well wisher you may not know how to talk about autism in a way that supports a family affected by autism. Here are some of the things parents have told us you can do:
Find out about autism
View our resources including short experience sheets with basic information about autism or our directory to find out about resources available in Pakistan. By knowing more about autism you can avoid common misconceptions about the condition for example that autism is an intellectual disability or that someone with autism is always a genius.
Be a good listener and don’t deny the condition
If the individual or parent is approaching you to talk about autism it is because they trust you. Even if you think you don’t know the right thing to say, you can listen and show that you care.
I had a lot of well meaning friends who reacted by telling me the doctors and I were wrong and my child didn’t have autism. When I shared the diagnosis they sat down, put on their brightest face and said, ‘Of course not, of course he isn’t autistic!’ Imagine saying that to someone whose child was diagnosed with leukaemia. You wouldn’t. If anyone shares a diagnosis with you, listen, just listen and let them know you are there for them.
A parent
The first thing we did after the diagnosis is go through every parenting decision we had made and tried to figure out if that was the reason our son had autism. Was it the epidural? Was it the water? Was it because we went back to work? Was it the paint? At that stage, even a well intentioned but uninformed suggestion from a friend on something that may have contributed to the diagnosis caused us a lot of anxiety. Please find out as much about autism as possible so you can help us understand current research on autism and help us stop blaming ourselves.
A parent
Encourage parents to seek professional help
Autism currently has no cure but research indicates that early intervention therapies can help an individual’s overall prognosis. Initially after the diagnosis, parents are often quite vulnerable and can fall victim to claims that encourage them to try ineffective or even unsafe treatments. Unfortunately fraud is a huge business and parents of children with autism are often targeted. Encourage parents to seek professional input and support.
Help with the practical stuff
Autism is often referred to as an “invisible disability” so it can be more difficult to know how to offer support. If the individual with autism or parent is close friend, find out when they are next meeting the doctor, therapist or school for a challenging conversation. Call them, drop in for chai or leave them food outside the door, whatever shows that you are thinking of them. You can also offer practical support: shopping, organising appointments or spending time with siblings.
The best support I got when my family was going through the diagnosis was from my neighbour. She always knew when we had an appointment with the paediatrician and would come in the afternoon after and fold my laundry. She didn’t put her support into words but her actions said everything.
Making your home an autism friendly space
Individuals with autism and their families can find going out stressful. You can make your home comfortable for someone with autism. The best thing to do is to find out as much as possible about them and their needs. As autism is a spectrum condition, something you may know about one individual with autism may not apply to another. Some ideas though that could help are:
Show your support in public spaces
Individuals with autism and their families can find going out stressful. If you are in a public space witnessing an adult or child with autism having a meltdown or tantrum offer your support. Often, there is nothing you will be able to do to help the individual directly but you could offer help to their parent or carer who will know how best to support them. Sometimes though there may be practical ways that you can do such as letting an adult or child with autism ahead in a queue or by stopping what you are doing, for example using hand dryers in public restrooms, if that is giving the child around you sensory distress. There are a lot of simple things all of us can do to show we care.
If you are a parent do you remember the pure joy of your child taking the first step? When they scrawled their first word? First time they opened their arms and squeezed them tightly around your belly? For the parent of an autistic child the joy is sweeter…oh so much sweeter…
Celebrate with the parent with their child or the individual with autism at work when they achieve something they have been trying to do for a long time. If you know an individual with autism or someone who supports them who you think is doing a fantastic job please contact us so we can feature them in our Spotlight section.
Perspectives from a well-wisher on autism
It took a long time for me to pen down my thoughts on paper. Honestly, I was scared and still am while writing this piece as I do not want to hurt anyone’s feelings. I was 12 when I first heard the term autism. Our next-door neighbour’s son was autistic and sadly, the only understanding we had of his condition was that he was a child who would cry and shout a lot and show a lot of aggression to get things done for him. We used to play with his other siblings but were not allowed by his parents to go near him. These are memories from early nineties, but still etched so strongly in my mind. At that time there was very little support provided to parents of children with autism. Unfortunately, but not surprisingly, apart from a highly expensive speech therapy programme available in just two metropolitan cities, nothing substantial was available. Looking back, what’s surprising to me now though is how they got the diagnosis done despite the scarcity of resources and lack of understanding of autism at that time.
Today, almost three decades later, what has changed? A question I often ask myself. I am not talking about internationally but in Pakistan, have things changed for parents and children with this condition? From the experience of a loved one and someone very close to my heart, when as a mother she got to know of the diagnosis; she was unable to tell or define in one simple line what autism was and ask for help. I know even how many doors she has knocked on and how many times she has been left disappointed. From hospitals to therapy centres and to educational institutes. I am not blaming anyone, all these institutes have their own reasons but in the middle of all that, the one who is suffering, and their carer are at a loss completely. And this I find the scariest of all. While a lot of things are written about this condition and how to deal with it, in practical terms no concrete steps have been taken to integrate these children into society.
Even if we look at an individual level, what are the efforts so far that have been made? In my opinion, one of the biggest reasons for the lack of integration is the absence of empathy and the judgmental nature of people. However, I also feel that families and friends are reluctant to approach either the parents or the child, as the carer tends to over protect these children from the outside world. Sometimes this protection is simply for the child and other times from the fear of embarrassment their behaviour might cause to the parent in a social gathering. I think twice before I say anything to the parent of a special-needs child worrying it might be taken negatively or cause pain. I understand that such mentality breeds from either lack of understanding or just plain ignorance. But to overcome these challenges, I feel that at the individual and social level, communication and awareness is very important and this needs to be across the board. We need to start overcoming our reluctance and be more empathetic. In my opinion while it may not be the only reason, but it is definitely a major factor to help these individuals feel socially integrated and as Our Small Wonders puts it, help them become the best version of themselves.
A friend
