A Heartfelt Note during Autism Awareness Month
Diagnosis and the journey thereafter
It has been nine years since my son was diagnosed with autism. He is a non-verbal autistic child on the higher end of the spectrum, and life has never been the same since then.
When my son started school at 2.5 years old, he was not speaking. We thought that the challenges of living abroad without extended family support and the demands of our daily routines were causing a speech delay, which is a common phenomenon in children. We hoped that he would develop new social contacts and skills that would encourage him to communicate more explicitly, but a few months passed, and there was no change. He couldn’t mingle with other children and was always sitting alone in one corner of the room while other kids played in groups.
Concerned about my child’s development, I sought expert advice. Before getting an appointment with the child development and psychological department of the hospital (which involved a long wait), I did some online research and discovered that my son had all the classic symptoms of autism, including delayed speech, little to no socialization, arranging toys in a linear pattern, flipping hands, no response to his name, no eye contact, high sensitivity to people, noises, and lights, etc.
I knew it was time to seek professional help to have a clear picture, but I still hoped I would be proven wrong. Unfortunately, the diagnosis confirmed my intuition, and it broke my heart despite my preparedness for the worst possible outcome.
We faced a challenge by fate, and we had no other option but to catch it. A shortage of schools catering to special needs kids is common in Brussels, and our son’s first disappointment after being diagnosed was the rejection of his place in a regular school because the teachers were not trained in the special needs care required of autistic children. We had to pull him out of the school immediately, and we couldn’t blame the teachers for their honesty.
Fortunately, my son got a place in a day hospital that functioned like a daycare or a school for kids with different needs or issues. Autism was one of them, and before my son started his next school in 2016, he continued in the day hospital for two years. That was a great help indeed. By the time he got a place in the special school, he was toilet trained, understood how to use pictures for communication (PECS – Picture Exchange Communication System), and could use a word or two to communicate his needs.
In 2016, he got a place in a primary school founded specifically for kids with Autism Spectrum Disorder. It’s been nine years since then, and the journey continues. We are still battling his agony of being unable to explain inner frustrations, high sensitivity to loud noises, and inability to concentrate for long periods on any particular activity (which impairs his learning abilities to read and write). There have been numerous occasions when his pent-up frustration would turn into a meltdown, and he would end up shouting, crying, and hitting himself. At that moment the only thought that crosses my mind is “I wish I could understand your unsaid words”.
But it doesn’t mean that there has been no progress at all. He called me “mom” when he was eight years old, one of the happiest moments of my life. He is becoming more autonomous every day (can make a simple sandwich for himself when hungry), and more accepting of the changes proposed to him. He uses single word communication for stating what he needs. He has developed an interest in cooking which we would love to develop further.
Our journey with autism so far has been full of ups and downs. But I am happy that we didn’t shy away from seeking help and accepted the diagnosis and requisite guidance positively. That reminds me of an incident that dates back to 2004-2005. I used to teach kindergarten kids. I had a student who had similar issues like my son. But since I was not aware of the reason behind such traits (read lack of awareness then), I couldn’t specify clearly to the parents. I suggested parents see a child psychologist to understand the reason. Parents took it otherwise. His mother asked me upfront “Do you think my son is mad? All he needs is the teacher’s attention.”
Being a parent myself now, I accredit that mother’s response to a lack of awareness and an attached sense of embarrassment in such cases (especially in societies of the Indian sub-continent). The unfortunate thing is even after so many years, autism awareness is by and large still a bookish concept. Except for a few experts in the medical fraternity, psychologists, and the special education faculty autism isn’t a much-known concept among the masses.
Even in 2023, when I told someone about autism, they had a blank expression and declined to know anything about it. What’s more worrying about the scenario is people consider autism to be some sort of disease that can be cured with medicines. My brother’s neighbour suggested that I must see a doctor as his nephew in a similar condition had a considerable improvement after the doctor’s intervention. I clearly don’t know what has transpired or what was the situation they dealt with but my stance was clear “Autism is not an illness”. Sadly a certain level of stigma is still associated with neurodevelopmental disorders that people don’t want to talk or accept about them openly.
A kid diagonised with autism needs therapies to enable him/her develop skills for daily life, communicate better (though every autistic is different when it comes to communication skills) and improvise the social interaction/behaviour. People with autism or any other neurodevelopmental issue deserve comprehension and compassion, period!
You can always share with me!
After I shared about my son’s diagnosis, a friend of mine called me and said she wanted to share something. She opened up about her son who was also diagnosed with autism spectrum. She poured out her heart about her struggles as an autism parent. She chose me to confide in, and I consider myself fortunate. Recently, another friend of mine shared her doubts about her child being on the spectrum. I understand how nervous that point can be to be at.
Being an autism parent isn’t easy (for that matter parenting comes with its own set of challenges). Constant efforts to provide better opportunities to enable their kids to learn and lead a life at par with any other person coupled with anxiety about “what after us” defines the lives of autism parents.
I have had my fair share of struggles and still continuing to deal with them but would be happy to lend my heartfelt support to parents with autistic kids. I don’t have any professional training but have the heart at the right place to hear you out and understand your position. I think we deserve such support.
An Important Mention
Whatever my journey has been, I consider myself to be lucky enough to have found helping people and dependable organizations to smooth out the bumps in our ride. Since the diagnosis SUSA and FAMISOL (NGOs in Brussels, Belgium) have been constantly on our side, helping us to plan activities for my kid, seeking government aid/benefits, searching for a place in school, etc. My son’s school “Ecole AstronAutes” has been a great asset to us in this journey so far. Expertise alone can’t set things right, it’s love and care that work wonders. I am privy to this.
In India, I came across a wonderful organization “ASHA HAI” which literally translates to There’s hope. True to its name, the organization with its well-trained faculty is putting in a lot of effort to turn around and make lives easy for kids with autism spectrum and other special needs.
Asha Hai – Aiming inclusivity & empowering young minds
Don’t let the definition of autism define or limit your love for your child or the dreams and aspirations of your kid. They have a different prism to look at things, perhaps not only different but beautiful as well than how we perceive the world around us.