Raising Elia in a neurotypical world

I work as a journalist and am a single mother to a child who was diagnosed a little over three years ago with Autism Spectrum Disorder. Allow me to share what that means based on a clinician’s report: When she was three-and-a-half years old in 2023, Elia scored 35.5 on the Childhood Autism Rating Scale, placing her in the moderate to severe category. So she had developed more like an 18-month-old, would not speak any meaningful words and instead pulled or dragged me to what she wanted. She would avoid eye contact and not respond to her name either. When she was overwhelmed or angry, she would use repetitive behaviours to self-regulate, like rolling her hair, spinning car wheels, flapping her hands or walking on her toes.

Her doctors said she needed Applied Behaviour Analysis and Developmental Therapy. Speech and language therapy would use non-verbal tools like the Picture Exchange Communication System so she could point to pictures to express needs. Occupational Therapy would help her learn fine motor control so she could feed herself.

As you can imagine, all this costs money, up to Rs250,000 a month. This had to be pursued legally in our case. The autism diagnosis was questioned. A board of medical experts weighed in. And even though there was a documented financial capacity to meet her needs, the figure decided on did not match actual costs. It has been a 30-month ordeal.

I realised that while our lower courts are familiar with determining the financial needs of a neuro-typical child, they have no idea what it truly costs to raise a neurodivergent one. Clear judicial guidelines to assess disability-based needs would go a long way in ensuring that decisions about autistic children are made to fully reflect their best interests and realities of their lives.

Let me give an example of how much a difference support makes. Two and a half years ago, I enrolled Elia in a mainstream school’s Nursery, which she attended with a trained shadow teacher. A shadow teacher is usually a psychologist trained in special education so they help the autistic child take part as much as possible alongside their neurotypical........

© Dawn Prism