To reduce misunderstanding
We have to start with awareness
"We found out very late that Jacob had autism." Jacob's mother recalled that her son, who could not speak and had emotional extremes when he was one-and-a-half years old. The father thought that the mother was overly concerned, as he believed that boys usually started to talk later. The mother revealed her mixed feelings at the time, "I once suspected that Jacob had autism, but I thought that autism had a great chance of being genetic. Neither someone from my husband’s nor my family had autism, so I had always been unwilling to believe that Jacob might have autism."
When Jacob was three years old, he still could not speak and started to have some behavioural problems. Jacob’s mother noticed the deteriorating condition of her son, decided to stop turning a blind eye and take her son for an accessment. Jacob was eventually diagnosed with autism. When the mother heard the result, sadness, emotional breakdown and confusion emerged one by one. "I didn't expect autism indeed to happen to Jacob. I was really upset and stumped. A bunch of questions came to my mind: Can Jacob go to school? How about his social skills? Can he enjoy school life..." The couple lacked awareness of autism before, so they worried about the growth of their son very much. "In our cognition, people with autism would self-harm and no longer lead to social life. We wondered how Jacob would live independently in the future." Therefore, they began to look for autism-related information and treatment, discovered that they had many misconceptions towards autism in the past, gradually accepting the fact that Jacob had autism, and actively arranging suitable treatment for Jacob.
Jacob’s mother was very concerned about Jacob’s social development. Since Jacob did not know how to speak, he would scream to express his desires. He also lived in his own world and did not care about others. After treatment, he has had significant improvement in emotional and behavioural regulations. The mother has been more willing to open up and share her son's situation with others. “Jacob's changes has made me deeply understand that if children diagnosed with autism could get appropriate treatment at the soonest possible, they would have a better chance to overcome the problems caused by autism.”
When the mother was being asked if she had ever encountered discrimination, she stated that Jacob was very naughty in the eyes of most of the outsiders, and laughed that this was already a very mild comment. She even encountered more embarrassing situations. "Jacob's self-care ability was weak, couldn’t go to the toilet on his own. People who misunderstood him would comment, ‘Why hasn’t he quit diapers?' Besides, once on a train, Jacob stood on a seat excitedly and shouted while looking at the scenery. A passenger scolded, ‘Why does he still scream at this age? How can you allow him to do so?’ And some parents saw Jacob, they would quickly take their children away and resisted getting along with us...I felt guilty and helpless, but I also understood why people view us in this way, just like I didn’t know autism before, so I would take my son away from the scene.” Jacob’s father would ignore the gazes of others, “Jacob is my son, and the most important thing is that he grows up happily,” he said firmly.
To accompany Jacob in his growing journey, apart from helping him receive effective training continuously, the couple has longed for understanding and acceptance amongst the public. Jacob’s father said, "Autism isn’t an infectious disease. I hope everyone can show patience. Do not look at people with autism with distorted views, nor to attack and label them." And the mother hopes that public education can be promoted at institutions and schools, so that people can lead to a better understanding and show support to people with autism. "Children with autism aren’t able to control their behaviours, they need time to make progress while receiving professional training. If more people understand and care for these children, their parents can bring them to explore the world at ease."
Jacob’s father and mother were invited to share their perspectives on ASD and ABA services with Autism Partnership Foundation (operating in Hong Kong) (APF, HK). Jacob is a past beneficiary of APF, HK