Autism - the child, the parent, and how to cope! Part III

One parent Janet (not her real name) recounts the experience of autism in her daughter. “We

noticed that by age 1 ½ she wasn’t saying any words, not even the anxiously anticipated “mama” or

“dada”. We waited a few more months as I’m aware that children develop at different paces, but the

speech remained delayed. After months of worry and nerves, we decided to take her in for an

assessment at age 2 ½ when she was diagnosed with mild autism.” Janet said after this they sprang into

“early intervention.” After months of being on a waiting list, they were able to begin occupational and

Applied Behavior Analysis or ABA therapy. This she said helped tremendously, especially with potty

training and attention span. She added “However, the expense associated with therapy was significant

and required some sacrifice. Further, after several trials, we finally found a wonderful preparatory

school that accepts children with autism; however, this acceptance came on the condition that she

attend with a shadow. A shadow can cost a family anywhere from 40-90k per month, sometimes more

depending on experience and qualifications. This additional expense, though difficult, was necessary to

get her the help she needs.” A shadow teacher is an individual who provides one on one support to

special needs students to help in the development of their academic, social, and behavior skills. 

As was said before, one of the keys to mitigating autism is early detection. Here in Jamaica

health officials have developed a method for early screening for early detection. It’s called a

child health and development passport. Professor Maureen Samms-Vaughn, explains the

passport. “This would have happened when I was chairing the early childhood commission.

And one of the areas that we wanted to work on is early identification of children with special

needs. So in collaboration with the Ministry of Health, we developed the child health and

development passport, which every baby gets at birth. And on that passport, there are

screening questions. And those screening questions are meant to identify if you are slow in any

area. So at six weeks, nine months, eighteen months, and again at three years, which are the

points that we recognize to be really important for screening there are some questions for

parents to ask about their children. Is your child speaking, is your child listening? But at 18

months which is the first time that we can really identify the features we have some very

special questions called the 18 months screen. So parents can complete these questions at 18

months and if they are concerned about any of these responses then that’s a reason to go and

speak with their health providers. “

One positive takeaway is that the autistic can provide innovation and genius. An autistic

person’s brain is wired differently. They think in different ways and may see the world in different ways. This can lead to innovation.

One commonly cited example is the English mathematician Alan Turing. During World War two Turing was credited with cracking the Nazi Code, which was instrumental in defeating the Germans in that war. Turing was autistic.

Autism is not a death sentence, not for the child or, parent yes adjustments will have to be

made but autism does not mean that a normal existence cannot be had. Some clinicians refer

to autism as the neuro-diversity of the human race. To close, we leave you with the words of one

parent Janet: “Having a child with a disability, whether physical, mental, mild or severe, can be

very stressful for the parent. Emotionally, we wonder whether we are doing enough and are

often simply exhausted with the day-to-day rigors of parenting. It can also be a tremendous

financial strain when we factor in the various elements needed for early intervention.

However, as the mother of a beautiful, feisty, curious, strong-willed child with autism, I encourage parents to remain optimistic as their efforts are not in vain. On the days when you feel overwhelmed,

vent to someone you trust and be assured that you are not alone in your journey as the parent

of a child with special needs.”