Embracing Autism with Love

By Desiree Kaur

There are interventions which aim to stop stims, linking it to behavioural issues thus defining autism as a behavioural disorder. When behaviour is assumed as a “problem” interventions focus on “fixing” the undesired behaviour. Here are some questions I asked when learning about autism.

“Why are the stims a problem? Why do the stims need to be “fixed”? There must be a reason behind it. There must be a pressing need.”

The more I read about approaches attempting to “divert” the action to something else, or to “stop” the stims altogether, the more upset I got. Eventually, I attended the SonRise Start-Up Program and Hanen: More then Words Parent Training. Both these approaches did not attempt to stop the stims, nor did it tell us to divert our loved ones from what they were doing so intently. SonRise explained the reason behind the stims, and it also terms it as something else – isms. Due to the negative associations with stims built up over decades, SonRise coined their own loving term for this act which brings our loved ones so much calm.

SonRise views autism as a social-relational challenge rather than a behavioural issue. The world we live in can be overwhelming for our autistic loved ones; light may be 10 times brighter, sounds may be 20 times louder, fabrics could feel like needles poking at them; so their isms are coping mechanisms that help them feel better. Imagine if you were having a day off from work, and watching your favourite television programme, when someone either turns it off or tells you to stop watching it. How would you feel? Helena Aufiya, 13-year old autistic girl shares that singing in her room by herself with a microphone accompanied by music, makes her feel good and “totally in the zone”. Especially after a day at school, she finds that, the music she plays and sings to represents the mood she’s. If she was interrupted while doing this, it feels really unpleasant and annoys her.

SonRise and Hanen encourages us to join our loved ones. Joining is a technique practiced by SonRise families the world over. It means exactly what it say – join our loved ones in their isms. Joining creates that bond and show our children we love them and we want to do what they do. Joining means showing them love, accepting them and letting them know, what they are doing is absolutely fine and look, we want to do it too. So, to break the stigmas around stims / ism, here is a compilation of experiences by people who have joined a loved one or someone with autism.

SonRise parent’s say this about their experience joining isms…

“My son’s ism used to remind me of the Dr’s prognosis and tell me that life was going to be so difficult. What made me change my mind was when I attended the SonRise Program and I realised that it’s actually something they needed to do. Joining was one of the most amazing thing I’ve ever felt when raising a child with autism, because the first time I joined him, which was to repeat words that didn’t make any sense to me, he started looking at me, and laughing and it was just so magical. To see a child go from completely withdrawn to smiling with me, laughing with me,  is really so life changing. “

Mum to 15-year old boy with autism living in Singapore.

“Initially, I found my son’s isms weird. I was guilty of labelling my child’s character with his isms. He loves to make noises, and I would find it ‘noisy and annoying’ most of the time. I attended the SonRise Start-Up Program and learned how isms could just be my son’s way of easing himself from discomfort he feels around him. And, it was about us instead of him. Since I started joining him, it felt awesome! Never connected to him that closely before.”

Samantha Yoong, mum to JB, 9 year old boy with ASD from KL

“Before I understood isms, I found them stressful, frustrating or bewildering depending on the situation. The SonRise Program and other educational information in connection to autism explained that isms are an important make-up of a person with autism and understanding them and joining isms are vital social development tools. I enjoy joining my son’s isms, though I do find them a little tiring. We now have a much better relationship and a lot fun with our joining sessions. I don’t feel stressed about isms even if I do not join. Lots of acceptance and understanding between us.”

Valerie, mum to Scott Low, 22 year old boy with autism from KL, Malaysia

“In the beginning, I tried to stop my son from doing all the isms as it did look awkward and abnormal. After attending SonRise, I knew the reason behind the isms and, hence allowed him to ism as much he wanted to. The moment we let him continue his isms , his tantrums stopped and meltdowns reduced, therefore we realised that this is the right thing we are doing. Moreover he started to connect with us. Initially it was bit weird for us to join him but as time went by and the more we joined, we felt good as we were getting all the respond from him that we had longed for all these years.”

Janani, mum to Dharmeshwar Dineshkumar, 6 year old autistic boy from Penang, Malaysia.

“I wasn’t unhappy with his ism but I felt uncomfortable when we were in public because it looked weird. Reading Raun Kaufman’s book called Autism Breakthrough, following autistic adults on Instagram and hearing their stories changed my perception towards stimming. Stimming always serves a purpose either to calm anxiety, stimulate the mind or simply out of boredom. I also realised I too did some version of stimming like fidgeting with my pen during long meetings or listening to a new song I love over and over again. Just because my son’s version of it looks strange doesn’t mean it’s wrong! When I started joining him, I felt like I understood his stims more. For example, when he was around 2 years old, he loved looking at his fingers closely to his face. When I joined in and did the same, I realised I could see some kind of optical illusion through my fingers. That was when I realised there’s always a reason behind his actions. It wasn’t meaningless. He also started giving me eye contact when he noticed me doing the same thing as him. A sign of him starting to take interest in me and join my world. Now, he’s very interactive with family members and his therapists!”

Michelle, mum to William, 5 year old autistic boy in Malaysia.

Besides parents, others who love our kids and spend time with them, also share their views on stims / isms and joining.

26-year-old Loh Zhen, who started as a volunteer for SonRise families in Singapore shares her experience too.

“When I first started out as a volunteer, I did not understand why children stimmed/ismed. After joining, I learnt that it was necessary for building all the connection and trust that was key to showing our children the way out. I realised how helpful joining could be when I bonded quickly with the children and adults I met for the first time. I am always learning something new! For example, I remember feeling so inspired to challenge my own attention to details when I joined a wonderful young man make miniscule food art using clay!”

Loh Zhen is now a play therapist practicing the Son-Rise Program and has been joining for 7-years. She is an Associate with Embrace Autism Singapore and the first SonRise trained Associate in Asia.

“Isms felt like something negative to me, and I also felt completely clueless on what to do when the child isms. I learned the importance of isms and joining when I participated in sharing sessions by SonRise parents. It was part of my training to become an EAM Buddy to my 6-year old, autistic nephew. By joining, I was able to get closer with my buddy, and form a good relationship. We were both able to have more fun together in whatever we do.”

Another EAM Buddy from Penang, 25-year old Dhanieya says she found isms cute and playful even before she trained as a Buddy. She says,

“Joining creates a special connection with the child. I was able to interact with every action my buddy did. He always smiles whenever I “join” which gives me the indication and fulfilment that there is interaction taking place. “

In Malaysia, I have observed that interventions to “fix” behaviour and get kids with special needs “ready” for a “mainstream” school setting, still remains the primary goal. My question is, why? Why is mainstream the goal? When we know and see for ourselves how some of our loved ones truly struggle in environments that are just not conducive for them, why are forcing a circle into a square. Yes, you could shove a circle into a square but it will never truly fit, because both shapes will not change. This is why, breaking the stigmas and stereotypes is so important. Let’s start today. Do something that leads to a more inclusive society. Send this article to someone, spread the word. Talk to your kids about disabilities. Learn what inclusion really is because this is a collective effort. Each and everyone one of us play a vital role. The future belongs to our children, so let’s start now by giving them the building blocks for a future where everyone has a place.