Saying the right words at the right time is a sign of basic social intelligence. As simple as it may sound, it’s a skill not many of us are able to exercise. And this has consequences. Language matters, and words have the tendency to make or break one’s mental health.
The good news is, that lack of empathy isn’t a fixed trait and can be created through awareness. From an autism perspective, empathy is crucial not just for children with autism, but for the mental health of parents or caregivers of individuals. From my experiences of working and conversing with autism parents, living both in the United States and in Pakistan, and from my own personal experience as an autism parent, I have compiled a list of the 10 most hurtful/inappropriate questions or comments that autism parents frequently hear in our communities. To each of these I have proposed appropriate alternatives that you can use to show kindness, compassion and empathy:
- “Why does your child have autism?” Before asking this question, that can:trigger complicated feelings in parents; imply that they are responsible for their child’s diagnosis; and be hard for parents to answer even if they are miles ahead in their autism journey; please educate yourself
about the latest research on the causes of autism. - “I am so sorry/ bohat afsos hua/ bus imtehan hai Allah ka.” Autism families do not need your pity. Instead, of expressing sorrow over their child’s lack of ability or ‘slow’ progress, you could instead acknowledge the hard work of the parent and child for example: “It is so good to see the hard work you and you child are putting in with regards to [eating, toilet training, reading, climbing, tolerating people, playing, etc].”
- “Don’t worry, s/he will outgrow this. Tum aiween pareshaan hoti ho.” You may think you are trying to reassure a parent but in reality words like this are rooted in ignorance about what autism is- a life long condition- and the hard work parents have to put in to give their children the skills to navigate a world that is not made for them. You may also be delaying parents from seeking a diagnosis that unlocks the early intervention therapies that can positively impact a child’s prognosis. Instead, you can validate the parents’ concerns and fears and try and redirect them to constructive resources and parents groups.
- “Your child looks so normal. Yeh bilkul theek hai ab,” or so and so “ka bacha theek nahi hai” “Normal” and “theek” are extremely inappropriate and insensitive adjectives that are unfortunately used quite commonly to describe children in Pakistan to differentiate them from those children who are not considered to be “theek”. Please educate yourself on the person-first language for individuals with different abilities.
- “Do you have other children. Are they autistic too? Its better to spend your money on your normal children” or if the answer is no then, “I think you should have another baby to divert your attention.” Sigh. My advice on these harsh words is simply do not say them. They stem from the very un-Islamic notion that we should “invest” in our children depending on the “return” we get back from them. One child or more, children with autism should never be deprived of their rightful care and attention. And questions about more babies ignores the real, practical reality that a child with autism needs a lot of time especially in their early years. Here is what I found out about what Islam says about this important responsibility
- “He’s a gifted genius. Even Einstein had autism.” or “What special talent does he/she have?”This comment is rooted in a different type of ignorance that everyone who is autistic is a genius or has a passionate interest or talent. Although it may come from a positive place it is no less frustrating for parents to hear as it ignores all the challenges that individuals with autism and their families face. This is especially acute where the individual is verbal and does not have learning disabilities and put in a lot of effort to “mask” their autism so that those around them feel that they only have “mild autism”. If you want to show your support, root your positive comments in the hard work the child or family are putting in and celebrate individual milestones and accomplishments rather than making blanket statements about high intelligence.
- “My sister’s friend’s niece has autism. She got toilet trained at X years of age,” or “So and so’s child also has autism, but he doesn’t misbehave like your child.”Please remember that no two individuals with autism are the same. A popular saying suggests that “If you’ve met one child with autism, you’ve met one child with autism.” Therefore, comments like the above can demotivate autism parents, many of whom are already submerged in feelings of guilt and helplessness. My advice here would be: please never ever compare two children with autism. Instead ask the parent what you can do to help them with their child or with household chores or anything that can improve their mental health. More advice available here.
- “Why don’t you try the latest diet for autistic kids? I heard about this cure for autism…”There is no cure for autism in this world yet. Autism is a lifelong developmental condition. Please educate yourself on what can help.
- “Look what you’ve done to yourself. You look so much older than your age.” Unfortunately in our communities, people are judged by their appearance and autism families are not spared either. Mothers are often subjected to comments about their appearance. Instead of giving advice like, “why don’t you go to a spa/beauty salon/nail bar”, please acknowledge the hard work they are doing and reach out and offer practical help that gives them a break to recalibrate their mental health. Do not also pass comments on the physical appearance of their child. Please remember, that one of the developmental challenges that accompanies autism is sensory difficulties that can affect a child’s relationship with food.
- “What will happen to them in the future,” or “Will he/she go to university?” The future is unknown and autism parents already carry a lot of anxiety about it especially what happens to their child when they are no longer alive. Questions about the academic future of a child with autism can also cause worry. With a lack of resources for teenagers and adults on the autism spectrum, both in Pakistan and abroad, the prospect of their child even graduating from high school remains a big dream for many autism parents. Hopefully by this point in the blog you can predict what my advice would be: Focus on the present and acknowledge and celebrate a child with autism crossing any of their developmental milestones.
In the end, I would like to share this image from the University of Wisconsin-Madison, USA. On this Mental Health Awareness Day, October 10th, 2021, we must acknowledge this all the more. The very least we can do to help autism families is to educate ourselves about autism, en route to becoming more empathetic and aware individuals. Only then can we refrain from hurting parents by adopting mindsets that are kind and words that are ‘right.’
Isha Fahad has an MA Applied Child Development from Tufts University and is a board member of Asperger/Autism Network in USA and former LEND Fellow at the Boston Children’s Hospital. She is part of the OSW team.
