How do people in India support people with autism?

Support for people with autism is getting better and better. In terms of access to professionals who can screen, identify, and diagnose, there are trained professionals available in urban and metropolitan cities. The semi-urban and rural population travels to nearby cities for medical intervention and for autism- related services.

Early intervention is readily available in urban and semi-urban areas, but the same cannot be said for school-age children. Services are even less common for adolescents and adults.

A majority of urban private and upscale schools are open to provide inclusive education, but the same cannot be said about all schools in urban areas, and inclusion is less common in semi-urban schools.

What do you wish India did differently for people with autism? What is something India does well?

Autism is now better understood. There is a lot of awareness in terms of screening and early identification. There used to be a mindset, promoted by elders who had never come across children with developmental delay or autism, that families should take a “wait and watch” approach. This has changed immensely, and now parents do seek out help for children as they may be the first to identify any signs.

I wish that the country had a protocol or a fixed critical pathway of screening, identification, and referral. At the moment, this process is being mediated by a purely medical model. Children may or may not get access to therapy despite it being available in the community as the medical professional and the therapy services do not have any coordination.

It is up to the parents to look for medical professionals and therapy by engaging with other parents. There is a lack of formal structure to the holistic model of service from the red flags stage to therapy and mainstreaming.

How Autism Therapy Centers are Changing in India

Historically, parents in India faced a system of therapy services that was unorganized, inaccessible, and unevenly distributed. Services were provided in individual centers by single professionals. Access to therapy depended on many factors: time, finances, caregiver support, and self-training. Some parents started their own centers or institutes in partnerships or collaboration with professionals.

The increase in awareness and diagnosis in recent times is leading to an increase in demand from young parents in urban areas. This has become a booming market and business opportunity for start-ups, capitalists, and technologists.

On one hand, there are the centers and clinics from the older system: professionals, trained for years, who are carrying out young entrepreneurial ventures to provide therapy services while keeping the core professional training in the center. Parents invest their time, resources and emotional energy into running their own centers and clinics while collaborating with one or more professionals.

On the other hand, there is a new model: marketing companies and technologists who want to deliver therapy “products,” with a core goal of profiting from care. Such companies operate by converting personalized therapy into a product. The goal is to scale the product to a wider audience, quicker and faster, in order to retain profits. However, during the process of “productification,” the quality of therapy gets diluted.

The individual connection with each child and family is reduced to a call or click, and the result is that the individual is taken out of the question and replaced by a product. One has to stop. and ponder deeply on the ethics of these practices. The field of special needs in India is already reeling under poor quality of formal education. What the marketing company does is wrap their product in nice external packaging – a website, social media activities, and call center engagement.

Under this model, the number of sessions at each center is projected and planned with “sales targets” being set for each therapist. Each parent is considered a sales lead that is planned to be “converted” into “business.” The “conversions” are counted, and therapists are given ratings based on the percentage.

Ethical therapists and therapy centers should not aspire to become multinational companies and huge business entities, as that is not what our profession sets out to

do. As professionals, we understand that even if we are playing a small role of entrepreneur, our priority is always to provide quality therapy, deep connection, and support to the parents and uplift the community by spreading the right kind of awareness.

The corporate organizations, on the other hand, are only creating a culture of fear and urgency: If you do not take our product, your child is surely missing out on something amazing! The concern is whether these corporate centers are following ethical principles as closely as a clinical professional will and whether unethical practices will lead parents to distrust the advice of therapists.

Where there is demand, there will be an increase in business opportun rtunity. Young professionals with small-yet-fully-breathing entrepreneurial clinics and centers not only lose their goodwill under the pressure of a giant body but also faith in their own professional skill set. They crumble under the pressure of start-ups and corporations that have more investors and financial backing. The therapist becomes secondary to the person with the MBA. It all leads to diluted and poor therapy in the form of poor quality products under the glitter of shiny paper.