Shortly before my friend’s daughter turned two years, she woke up one morning and suddenly couldn’t speak. What had been a ‘normal’ childhood for her and her parents until that point turned into the beginning of their journey with autism.

They found out months later that the little girl, while sleeping soundly that night, safe in her bed, had experienced a brain regression, which meant that certain parts of her brain reset to zero, mainly the part associated with speech. This reset can leave some children unable to walk, transporting them back to the newborn stage.

The scariest thing for them was that they didn’t immediately realise anything was wrong. They noticed their daughter was grunting and making “whiney” sounds when she wanted something. They saw her throwing tantrums, not responding to her name or following directions. Moreover, she was avoiding eye contact. However, being youthful parents, and also having a nine-month-old, they chalked it up to ‘terrible twos’ or jealousy because of the new baby. It was only after speaking with their daughter’s teachers at her preschool and her pediatrician that they realised something was indeed happening. That’s when they got the referral to see a developmental paediatrician.

By that time their daughter was two and a half years old, and the information passed on to them was that developmental paediatricians didn’t like to diagnose kids with autism until they were three years old. But they pushed and saw the doctor, who told them officially that their daughter had mild autism and was deemed high-functioning.

When they heard their child was autistic they began doing the research and very quickly understood that autism manifests differently from child to child. Some children who fall into the high-functioning category stand a chance of ‘outgrowing’ their diagnosis, and stand a chance of leading fairly normal lives. However, that chance only comes at the end of a series of very costly interventions.

My friends were able to take their little girls to an applied behavior analysis (ABA) therapist to start therapy right away. Yet, getting a speech therapist proved to be an impossible challenge because, back in 2019, only three speech therapists worked with autistic children in Kingston, and they each had wait lists for over one year. Since then, two more have opened offices. It was not until August 2021 that they finally got their daughter to see a speech therapist.

With ABA therapy twice a week at $5,000 per session for nearly three years, and speech therapy twice a week at $13,500 per session for two years, she and her husband felt the financial strain of their daughter’s diagnosis. Plus, they were both out of work for three months and ended up selling their cars to help pay for their daughter’s therapy, as their health insurance did not cover any of it.

In the US, the Government offers support to families with autistic children, but in Jamaica, although our therapists are caring and highly-qualified, the cost falls solely on the family.

Therapy, however, is only the up-front cost of an autism diagnosis. After each session, the therapist told them to practise with their daughter that week to reinforce her therapy. Without their follow-through at home, the therapy would not work. It had to be a holistic approach to be effective. Since her mother worked from home, she was able to reinforce the therapy sessions, especially during COVID.

During this journey, my friends discovered that traditional Jamaican schools are very hesitant to allow children with autism (mild or otherwise) to stay in school as they are not equipped to manage them — several of them say they are disruptive to the class. This added yet another hurdle to their quest to find support for their child.

For my friends, their daughter’s diagnosis took over not only their lives but also the lives of their school community and their extended family, who thankfully stepped in to help reinforce their little girls’ therapy.

Because of all the support, last year when their now 6-year-old daughter went in for her formal diagnosis, she had improved in almost every area and given a formal diagnosis of mild autism. The doctor told her parents that her prognosis for the future looked overwhelmingly positive.

However, this is not where the journey ends. The child still needs a lot of support. Her parents have had to employ a shadow (an aide to attend school with her), which costs $70,000 per month, in addition to giving her ‘check-ups’ every six months to make sure she is meeting her developmental milestones.

Her doctors and therapists warn her parents that the real challenge will occur in high school. Kids on the autism spectrum struggle with social norms and friendships and experience a higher rate of suicide and attempted suicide in their teenage years than neurotypical teens. They are also at a higher risk for mental disorders and anxiety.

My friends are meeting this threat head-on, by focusing on building their daughter’s confidence now, helping her love herself, and laying the foundation for solid friendships that can hopefully withstand the storm that awaits them.

Autism is a costly diagnosis for a child in Jamaica. My worry is for all the mothers and fathers who can’t afford such a diagnosis. It’s expensive just to see the developmental paediatrician to get the diagnosis. The first appointment costs approximately $12,000, and each subsequent assessment has additional costs.

Teachers lament that parents often stop sending their children to school. And it’s painful to think what happens to them after that.

It is time we give more support to families raising autistic children in Jamaica, as the autism statistics are rising. Seeing my friends with their experience, I can now recognise children who are on the spectrum, even mildly.

I learned the other day that the Government will help subsidise the cost of a shadow if you qualify based on your tax submissions, but what about those who don’t file a tax form? Those who are domestic workers or sell at stalls in the market? Those whose livelihood depends on the informal economy? I am sure that autism affects them, too. It’s time we look at autism in Jamaica and put things in place at a policy level to assist parents with the support they need.

Lisa Hanna

Lisa Hanna is Member of Parliament for St Ann South Eastern, People’s National Party spokesperson on foreign affairs and foreign trade, and a former Cabinet member.