by Rabia Samad
Autism or the Autism Spectrum Disorder (ASD) is a complex developmental condition to which an even more complex set of misunderstandings and stigma are attached.
It’s no surprise that an autism diagnosis can change the entire family’s life. The emotional, social and financial effort that goes into raising a child with ASD can be taxing in more ways than one. Through this essay, I’m going to first enlist how we can add small alterations in our approach to Autism and then paint a not-so-pretty but important picture of what stage ASD awareness is at in Pakistan.
For the first part, here are a few pointers, keeping in mind the child, as well as their parents and their siblings - the people with the biggest roles to play. Early diagnosis plays a huge part in finding the most useful resources.
Symptoms such as delayed language skills or speech development, increased irritability, inability to communicate their needs or get along with other children can be some of the signs pointing towards a need for assessment.
If your child is having trouble at school, instead of forcing them to confine to a very flawed education system, try to look up resources. A few examples are apps like GRASP, Autism Speaks or @autismspectrumteacher on Instagram to find fun ways to educate your child and yourself. It's a lifelong process.
Finding the necessary help and support can often become a task. Numerous researches have shown a rise in anxiety and depression in mothers after learning their child has been diagnosed with ASD. One of the biggest reasons for this is the lack of awareness regarding Autism and the stigma attached to it.
First of all, as a community we need to build a support system. Discuss this condition without associating a sense of misfortune with it. Let parents figure out a way to help their child without having to deal with constant criticism and gossip. Parental counselling should be made more common. How can you help a child when you yourself don’t have the necessary knowledge to do so?
If a counselor isn’t available where you live, your next best option is the Internet - it has an answer to almost every question. Educate yourself.
As a parent, it is also important for you to ensure none of your children feel neglected or misunderstood. Have conversations with all of them about how they can help make it easier for their sibling to adjust and communicate how they feel.
50% of children in a research (who have a sibling with Autism) reported feelings of embarrassment while the other 50% experienced no such problems. So to tackle this issue, it might be helpful to build sibling support groups, where children can talk about any difficulties being faced by them in getting along with or understanding their sibling’s needs. Believe it or not, you can create the change you want to see.
Find activities that all your children enjoy. This can help your child with Autism improve their social skills and can also help in bonding between them.
The situation surrounding ASD in Pakistan
To say we have a long way to go, is an understatement. There are a multitude of issues that need to be worked on.
Most Special Education schools in Pakistan don’t have trained teachers and caregivers. We need a more thorough system. There is a need for training staff, like we do in the other fields such as nursing and a set assessment criteria on the basis of which caregivers will be selected. This is very important as the number of schools available are also very less. If they can’t be increased in quantity, we can surely work towards improving the quality.
We also need to focus more on training of individuals with ASD in areas of healthcare, academics, journalism and more, so that their skills can be enhanced. Education shouldn’t just be restricted to reading books and passing exams. Every individual is born with a skill. We need to help provide guidance in whatever skill that may be.
The quota system for people with ASD in terms of government jobs needs to be revised. For people who think this isn’t an issue- please look around and notice the lack of representation everywhere.
People with Autism are very much a part of our society. They may be different but are not lesser. It’s time for us to work together to get rid of the rampant ignorance associated with Autism Spectrum Disorder and move forward.