Autism’s heavy toll
As parents sacrifice much, society urged to understand intellectually challenged children
An intended ice cream break for Veronique Pitter and her autistic son, five-year-old Aiden Watt, proved to be a devastating reminder of the battles the mother fights daily to provide her child with a normal life.
Feeling overwhelmed and sleep deprived from monitoring her son through recent bouts of insomnia, Pitter decided to get him dessert at a popular ice cream venue.
Aiden’s doctor had advised her to get him super tired in the day to increase the likelihood of him getting more sleep at nights. After doing the preliminary sanitising and temperature checks, she attempted to get him inside but was stopped by security personnel who advised her that Aiden could not go in without a mask.
Pitter tried to explain to the two security guards, then a supervisor, then the manager, that her son is autistic and has sensitivity issues, but at every level, she was told that he would need to wear a mask before access was granted.
The World Health Organization has advised that children under six years old not wear masks.
Pitter, 34, took her son back to the vehicle and burst into tears.
That emotional breakdown is but a tiny part of the big toll, spanning financial and emotional burdens, faced by mothers of autistic children who even sacrifice their jobs to focus on childcare.
Pitter came face to face with signs that something was wrong when she came home one day and saw her then-14-month-old son pacing the floor. She called to him, but he did not respond. Since then, he has been non-verbal. After months of checking with varying specialists, he was diagnosed with autism.
“When he was diagnosed, if I could drop through the floor, I would have. I was so broken, and I cried almost every day. Like, every single thing would make me cry: if I go around people with kids, I would just break down; if you ask me too much questions about it, I would just break down,” she said.
The mother had to quit her job as the assistant to the general manager at a prominent financial institution as attending therapy sessions, getting assessments done, and turning up for workshops became her daily reality. She taught her son for the first year after the diagnosis as she realised that the regular school system was not feasible.
“Aiden used to go to a regular school before, when he was just diagnosed, and he would come home with pinch marks all over his body and bite marks. He broke his toe, and I didn’t even know about it, and nobody said anything,” said the mother, who explained that her son has a high pain threshold.
Pitter’s son now attends a private institution with specialised teachers, but this access comes at a hefty cost. Pitter and Aiden’s father, Andrew Watt, spend $130,000 per month for school fees alone. Added to that is the cost for speech therapy at $10,000 per hour. He needs at least two hours each week, so that’s an extra $80,000 per month.
Aiden’s parents also spend a lot of money conducting experiments because of his sensitivity challenges. This includes testing out different foods, different toothbrushes, and investing in other necessities.
Pitter, who started working outside the home again recently as a hairstylist, cuts Aiden’s hair because taking him to the barber is always a traumatic experience. It usually takes four persons to hold him while he gets his hair cut. She got tired, too, of being judged by other parents during those visits, so she has taken on the role as his barber although it is becoming more difficult to control him as he gets older.
“Initially, what I used to do is to tie Aiden to me with a scarf. So I put him in my lap, put him in a small chair right here, and I would tie around his stomach and tie him around me, and I would cut his hair,” she said.
The mother is also consumed by fears about her son’s future. She wonders how he will be cared for if anything should happen to her or if he would ever speak again. She wonders, too, about the fact that he is getting much stronger and more difficult to control.
Pitter, who also has a 13-year-old son currently doing online classes, gets overwhelmed by the amount of effort it takes to raise a child who is autistic. She doesn’t have much of a social life, but fortunately, she has located a few support groups on Instagram for mothers with autistic children. That has provided some solace.
“There is not much support for us. Even in the medical field, people don’t know about autism,” she lamented.
“You have people who tell you that you should beat him; they don’t even understand,” said Pitter, who is annoyed by the comments she often hears regarding Aiden.
She urges Jamaicans to be more understanding and empathetic towards children with autism.
There is no data on the prevalence of autism in Jamaica, and global estimates vary widely because the disorder’s diagnostic parameters are wide.
Beyond the WHO advisory, Pitter said that some autistic children resist wearing masks because of their disability. She has tried getting Aiden face shields, but he usually breaks them.
Aiden’s father is equally upset about how members of the disability community are treated. He reminds people that it is possible to become a member of that community overnight.
“You don’t have to be born disabled to become disabled. Disability can happen to any single one of us,” said Watt.