A recent report from the Wall Street Journal looked at rapidly expanding autism therapy services in United States and raised issues of both whether their billing practices are ethical and appropriate and how this is putting greater financial strain on families. The American debate has become a fight over insurance claims and reimbursement, but Indian picture is different while equally pressing questions are raised.
With the rising incidence of autism and increasing awareness about it, many Indian families are seeking speech therapy, occupational therapy (OT), behavioural intervention, special education and other developmental services much earlier than before.
However, with demand that is increasing everyday, many parents are thrust into an expensive and largely bewildering ecosystem with little guidance on what works and how much therapy they need.
Parents are usually recommended 2-3 sessions a week, or enrol into structured programmes with monthly costs in the tens of thousands of rupees especially for those living in metro cities.
Early intervention is key, say experts. But they also warn that more therapy doesn’t necessarily lead to better results. They cite evidence-based interventions, open treatment plans and professionals who can explain not just what they recommend but also why families need.
When desperation meets uncertainty
The therapy ecosystem in India is still predominantly out-of-pocket unlike in the US where insurers have begun to take a closer look at autism therapy bills. For a lot of families this came in the form of an immediate and personal financial burden.
Due to the lack of standardised pricing or treatment pathways, parents are often left to reach out through referrals from doctors, online forums, WhatsApp groups or other families on similar journeys.
“When our son was diagnosed at the age of three we were willing to do anything and everything. Each centre we tried suggested a different package. One recommended daily therapy for two hours a day, another wanted us to sign up for an all-day programme.
“At this point, we had no way to know what was medically relevant, so we just assumed if more therapy was good, than too much therapy must be better. In the next six months, we had already crossed almost Rs. 4 lakh to find someone who could objectively measure his progress,” said Ritika Sharma (36), a Bengaluru based mother who has recently shifted to Delhi for his Son’s therapies.
Another parent recounts the emotional struggle faced by many families’ post-diagnosis:
“Parents are constantly afraid that if they reduce therapy because of finances, they’ll be blamed later for not doing enough. That fear makes families vulnerable,” Delhi-based Anil Verma, father of five-year-old autistic boy .
The therapist’s perspective
Therapists caution against viewing the sector through the lens of a few problematic experiences.
“Most therapists enter this field because they genuinely want to help children. Good intervention is highly individualised. Some children may need intensive therapy for a period, while others benefit from fewer sessions combined with strong parent training. The problem arises when therapy becomes package-driven instead of child-driven,” says Dr Meera Nair, Jaipur-based developmental psychologist.
She says ethical therapy should be collaborative rather than prescriptive.
“Parents should feel comfortable asking why a particular therapy is being recommended, what the goals are, how progress will be measured and when the plan will be reviewed. Ethical therapists welcome these questions because informed parents become better partners in the child’s development,” she adds.
The Indian challenge
Autism therapy in India has seen a tremendous growth over the last 10 years with an increase in awareness and diagnosis for neurodevelopmental conditions. However, consistent regulation or standardisation hasn’t always kept up with the growth.
Reputed centres generally have long waiting lists for families and development specialists are also few and far in smaller cities. For several services, a lot of travel from one district to another or even one state to another which translates into additional expenses for transport and accommodation on top of the already exorbitantly expensive therapy bills.
The other challenge with this kind of solution is the lack of standardised pricing. Procedures and costs differ greatly from one city to another, one clinic or one therapist to another.
Families may also find it hard to verify professional qualifications. “Many of them are highly trained, evidence-based practitioners; however, parents frequently cannot tell who is a recognised professional and who is an unqualified therapists selling interventions with little scientific basis,” says
Anil.
Not all autistic children need the same therapy
Experts point out that autism is a spectrum, and therefore every child will be different.
Other children only need to work on speech and language therapy to develop communication skills. Some may benefit from occupational therapy for sensory regulation, motor coordination or daily living activities. Some children spend a short duration learning with structured behavioural interventions and others have parents-led approaches that take place back at home.
Specialists stress that what matters most is not the package or someone else’s model, but individualised therapy.
“More does not always equal better,” says Nair.
Questions every parent should ask
-Parents need to know what the therapy is working on specifically- trying to enhance communication, assist with child sensory regulation, improve a social skill or teach an activity of daily living. While vague assurances of “overall improvement” may sound nice, they are not as useful at detailed milestones that can be quantitied over time.
-They should also inquire how progress will be measured. Will therapists provide written reports? How frequently will goals be evaluated? If the child is not making progress as anticipated, what modifications will be made to the therapy plan? Evidence based care also involves regular reassessment.
-Another key question is, why a specific number of therapy sessions has been suggested? There is no one-size-fits-all formula that states that every single child with autism must receive a specific number of hours per week. Preferably, the recommendations should be personalized and not based on a general package.
-Parents must also ask about the continuous training as well as experiences of therapists working with their kid. Knowing who will run the sessions, whether therapists are supervised and if the intervention adheres to standard clinical practice can help families decide.
The Indian autism therapeutic ecosystem is rapidly growing and, to an extent, that is a welcome development. Improved awareness has led to more children being diagnosed particularly at an earlier age and receiving essential support through crucial development stages.
Yet as the sector expands, experts say the upside will need to be matched with quality, transparency and accountability. Children and young people deserve interventions that are specifically personalised, not a packages of therapy designed to add financial burden.
