What to Say and What Not to Say to Caregivers of Autism?

As the world evolves, our understanding of individuals with autism have skyrocketed over the years. With better understanding and compassion, society’s treatment towards individuals with autism has also improved. In the past, methods like electroconvulsive therapy and psychedelic drugs (LSD) were used as treatments despite the risks involved as there was little academic literature about autism at that time, and it was only beginning to get recognised as a disorder separate from schizophrenia (Zaky, 2017). Now, individuals with autism are viewed as human beings like yourself that may sometimes exhibit behaviours outside of the norms set by society. Furthermore, better treatment methods and support are readily available for caregivers and individuals with autism. However, the world has only just started its turning point towards a more dignified and positive treatment towards these individuals. Despite the improvement in societal views, there are still remnants of insensitivity in people’s uninformed choice of words when they speak to caregivers. An alternative way of phrasing would help people in having a deeper understanding of individuals and caregivers of autism as well as making their day a lot better. Here are some things not to say to caregivers of autism, and what we could say instead.

“Do they have an obsession or fixation with numbers or other weird stuff?” or “They must be hidden geniuses or talented!”

Instead, ask this – “What are they most interested in?”

What may be ‘weird’ to you may be the most enjoyable treasure for them. Everyone has their own interests, preferences, and individualities. The little differences sum up the best parts about life where people complement each other to fit a whole puzzle. If everyone were the same, the world would be rather boring. Moreover, when you meet one person with autism, you have only met one person with autism. No two individuals with autism are the same, thus we should do away with stereotypes and outdated textbook definitions on what a person with autism is supposedly like. The ongoing trend of thinking where individuals with autism being savant can be rather ignorant as well. Instead, get to know them personally; this allows you to learn, and it can be a precious opportunity for individuals and caregivers of autism to share about themselves.

“It must be SO difficult for you all the time.”

Instead, say this – “I understand how difficult it can be at times and you’re doing the best that you can.”

It is not always about the choice of words. The tone matters as well. Caregivers of autism know that journey is not an easy one and they tell themselves that too. To hear it repeatedly by others can be draining unless it is paired with an encouraging statement. Caregiving takes a lot of strength and resilience physically, mentally, and emotionally. There will be days where they will feel confident and capable of anything, but they are only human after all – other days will feel like tidal waves of exhaustion, burnout, and loneliness. You may not be able to fully understand what they go through, but you can definitely make their day by giving words of encouragement and empowerment. Words of affirmation are one of the most powerful tools of support, even when they come from strangers.

“Why do they like to clap their hands so much? It’s weird/annoying.” or “This can be cured.”

Instead, say this – “I’m not entirely familiar with autism and the methods of treatment/coping. Would you like to share about it?”

Autism should not be looked at as a disease, but rather, as a condition that may cause individuals to behave and express themselves in ways that are different from social norms. There has always been an ongoing debate of whether individuals with autism should be viewed as people who are forced to change who they are or learn to modify certain extreme behaviours (that maybe dangerous to themselves or others) while still being able to be who they are. Instead of forcing them to repress their harmless stimming (i.e. hand flapping, verbalisations), we should let them be able to express themselves in ways that they can. In the recent years, stimming has also been discussed as a form of coping with overstimulation or lack of stimulation that allows them to regulate their emotional state (Kapp et al., 2019). Furthermore, the more you learn, the easier it will be to share the knowledge and spread awareness to others so that we can work to be aware and open-minded individuals.

Staring rudely at individuals and caregivers of autism.

Instead, say this – “Is there any way I can help?”

Sometimes, you do not have to say anything to be insensitive. It can be in the way you look at others and judge them without further analysing or bothering to understand. It is rude to stare and judge, especially in cases where someone with autism is having a meltdown in public and their caregiver is struggling to calm them down. It is at those crucial times when all the caregiver needs is support and understanding. In Singapore, the culture of ‘minding your own business’ can be quite harmful as people who truly need help are ignored. No matter how awkward it may feel, even if you feel that they will refuse your help, extend an offer. It will probably brighten their day regardless.

Although times have changed for the better, we still have a long way to work towards inclusivity for individuals and caregivers of autism. With that, I hope we can see individuals with autism for who they are and recognise the much needed support for caregivers of autism. Instead of seeing them as weird and ‘different’, see them for how they are the same with you and me – human beings in need of love and understanding.

Written by Alisha.

References

Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782-1792. doi: 10.1177/1362361319829628

Zaky, E. A. (2017). Autism spectrum disorder (ASD); The past, the present, and the future. Journal of Child and Adolescent Behavior. doi: 10.4172/2375-4494.1000e116