"The Struggles Are Real" — Why Romanticising Autism Does More Harm Than Good
"Here's a new notion, how about just accepting all of it, the good and the challenging parts."
By Desiree Kaur — 17 Apr 2023, 02:55 PM
It’s been six years since I started learning about autism
I still cringe on the inside every time I get asked questions like, "So what is your son's talent?", "What's your son's special skill?", or "What is your son really good at?" When I give very generic answers, I can see and feel the disappointment.
In general, communities are now more aware of autism, and I believe we are making leeway towards acceptance every day. But the notion that all autistics have some kind of talent or special abilities is cringeworthy and needs to come to a halt.
Sometimes, I get the feeling that people feel the need to "find something good about autism" to accept it.
Here's a new notion, how about just accepting all of it, the good and the challenging parts.
Savant skills are NOT exclusive to autistics
Only one in 10 autistics have savant skills. According to SSM Health, not all autistics are savants; and not all savants are autistic. Looking at the big picture, most stories we see highlighted in the media on a large scale, involve only that one in 10. What about the other nine?
It also does not help when organisations like The National Autism Society of Malaysia (NASOM), make it a point to highlight talented people with autism, artists with autism, and famous people with autism.
No, it is not wrong to highlight the amazing talents some of our autistic friends have, but there should always be balance in reporting. So, I ask again, what about the other nine? Aren't their stories worth telling?
Stop romanticising autism
My family and I have experienced a range of reactions to our son's autism. Don't get me wrong, I am truly grateful for the love, support, and encouragement we still have from those closest to us. In fact, we have been rather lucky. To date, we have not received any adverse negative reactions to our son's autism. However, the reaction that saddens us the most is "pity".
I recently wrote about this on Makchic for World Autism Awareness Day and highlighted the theme for World Down Syndrome Day this year, which is "with us not for us".
I have observed that people have a tendency to "romanticise" autism by always following a challenging experience with a positive comment. When a child like mine struggles with so many things in this world, we do not need to be told what's good and what to be grateful for. Do not romanticise autism because the struggles are real. Kids do not outgrow the struggles and lifelong support is necessary no matter which level of autism a person has.
People are successful because of their determination
Have you ever read an article in a prominent media outlet that told you the story about someone who was a great success — be it in their career or special talent or life itself — and only in the last line did it mention "by the way, this person is autistic". I highly doubt it.
In a world where we are still arguing about the language around autism — whether it is more appropriate to say "person with autism" or "autistic person" — a lot of the time, success stories highlight the autism first, in a big way.
Yet, this is ok, but saying autistic person is taboo and offensive, to some.
I get the importance of highlighting success stories. Firstly, it sells headlines, and people are more likely to read it. The person featured definitely deserves to have their story told because of their sheer determination. It can also be inspirational to many. There are many reasons why this is good.
However, this also sets a rather dangerous precedent when we don't highlight enough of the ordinary stories. This is why the world assumes that autistics are savants, and all have extraordinary talents.
Equating autism with superpowers can be offensive
Especially in April, there tends to be more attention on autism. The awareness movement has progressed from being Autism Day to Autism Week and now we have Autism Month.
I can't speak on behalf of the autistic community, but I have been told by members of the community that equating autism with superpowers is rather offensive.
Most of the time, people mean well. Again, I go back to the notion of romanticising autism. When we use phrases like autism is a superpower, we are trivialising the real challenges autistics face daily. So, before using that phrase, ask yourself — are you saying it to make yourself feel better or do you really want to pay someone a compliment and mean it? If it is the latter, then please pay the person a compliment, which they understand as a compliment.
Listen to autistic voices
So, here's my conclusion. Always be respectful, and it does not hurt to ask someone if you are being respectful.
I am still new to the world of autism, and I always preface that I do not speak on behalf of the autistic community, because the community speaks for themselves.
I am just a mother, learning something new every day about my son and about the people around me.
My most valuable lesson from the autistic community is to always be respectful and ask the autistic community themselves about inclusion. How can I possibly know how to be truly inclusive, when it is not my own, personal lived experience?
Finally, I would also like to raise awareness on the term neurodiversity
Beyond autism, there are other neurodivergent conditions such as ADHD, dyslexia, dysgraphia, dyspraxia, dyscalculia, to name a few. Sometimes, neurodivergent diagnoses can co-occur. For example, a person with autism could also have dyscalculia or dyspraxia.
Autism gets a lot of attention in April and beyond, however, to be a truly inclusive community, let's also pay closer attention to the entire neurodiverse community. Only when we pay attention, listen, and learn can we truly be an inclusive community.
About Desiree Kaur
Desiree's passion to advocate all abilities was ignited in 2017, when her son, Haans, was diagnosed with autism. She did not find it hard to accept his diagnosis. Desiree could not accept the challenge in obtaining information to help her family.
Desiree decided to pursue a Master in Education (Special Education) at Universiti Kebangsaan Malaysia (UKM). She's also attended various parents training such as the SonRise Program.
Project Haans was founded by Desiree in 2019, kicking off with an awareness event which garnered media attention.
In 2021, she launched the Project Haans Website, which consists of a directory of services for special needs and a collection of articles on neurodiversity. Project Haans also has learning modules on the Open Learning Platform. She is also the Vice President for the Kiwanis Club of TTDI and a Subject Matter Expert on Autism, for the Kiwanis Malaysia Academy (KMA). She is a contributor to Malaysian parenting portal Makchic.com and Co-Founder of Adells Learning Centre.
This story is a personal opinion of the writer and does not necessarily reflect the position of SAYS.
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