This is the the second of a two-part series on a deliberate misinformation campaigning denying autistic children a chance to lead a near-normal life.
Early intervention could help children with autism. (Cadree.org)
Part one of the series dealt with the unhealthy trend and ignorance of autism forcing several parents to seek alternative therapies and denying critical vaccinations to the children. The second part sheds light on how crooks attract parents to practitioners who promise total cure — to a condition that is not a disease. The first part can be accessed here.
Desperation often clouds logic and makes people gullible, a parent narrated an incident she had witnessed outside a therapy centre in Mumbai.
“There were people — agents — outside the centre,” she told South First, wishing not to be identified. They slyly approach parents waiting with their autistic children.
The agents’ first step is to strike up a conversation. Once they win the confidence of the potential victim, they explain the benefits of alternative treatments.
“They claim that they also have a special-needs child and have taken such alternative therapies that have made their condition better. They would praise a specific doctor, making the parent fall for them and sign up for treatment. They are playing on the parents’ feelings and fears. They don’t even qualify to be called humans,” she added.
The woman also spoke about a paediatrician from Mumbai, who makes flying visits to Bengaluru, Hyderabad, and other South Indian cities. “He prescribes some syrups, and medications, claiming that they help the children. These medicines cost anywhere around ₹15,000 a month,” she said.
“He is a paediatrician who prescribes neuro medications. There are many centres offering therapy in Bengaluru, which leaves the children terrified. They keep the parents in the dark and don’t allow them into the therapy rooms,” she added.
Dr Tangella Ravikanth, Consultant Child and Adolescent Psychiatrist at Little Wings Child Development Centre in Hyderabad, echoed similar fear. “Never trust such centres. Always look for a certified therapist who even trains parents to be part of their intervention programmes,” he said.
Undergoing therapies at such centres deny the children early intervention by professionals and an opportunity to lead near-normal lives.
Early intervention encompasses a variety of therapies, depending on the child’s needs and the severity of their symptoms.
They include:
Behavioral therapies: Applied Behavior Analysis (ABA) is a widely used approach that focuses on improving specific behaviors, such as social skills, communication, reading, and academics, as well as adaptive learning skills, such as fine motor dexterity, hygiene, grooming, domestic capabilities, punctuality, and job competence.
Developmental, individual differences, relationship-based approach (DIR/Floortime): This therapy focuses on emotional and relational development (feelings and relationships with caregivers). It involves meeting children at their developmental level and building upon their strengths.
Speech and language therapy: Helps improve the child’s communication skills, enabling them to express their needs, thoughts, and feelings more effectively.
Occupational therapy: This focuses on improving the child’s motor skills, like feeding and dressing themselves, and sensory integration issues, making it easier for the child to process sensory information.
Physical therapy: This aims to improve the child’s gross motor skills, enhancing their ability to perform tasks such as walking, sitting, or maintaining balance.
Social skills training: This is often meant for older children to help them learn how to interact more effectively with their peers.
Parent training and support: Educating and involving parents in the intervention process is crucial, as they can reinforce skills learnt during therapy at home.
Alternative therapies, often hailed as a beacon of hope for families struggling with autism, have surged in popularity, promising a ‘cure’. Their treatments range from unregulated herbal supplements to unconventional practices like chelation therapy and hyperbaric oxygen chambers, all claiming to mitigate the core symptoms of autism spectrum disorder.
Dr Ravikanth expressed concern over these treatments. “Despite the lack of rigorous scientific evidence supporting their efficacy, proponents of these alternative therapies often exploit the vulnerabilities of parents desperate for solutions for their children. However, not only are these treatments empirically unsupported, they also pose significant risks, from financial exploitation to potential harm to the child’s well-being,” he said.
Doctors explained parents go through tremendous mental, social, and familial pressure and are forced to look for quick improvement. This desperate, helplessness by parents is misused by several quacks who offer ‘cures’ or medications for autism.
“Parents who are desperate and feel helpless are made to believe that autism is a disease and can be ‘cured’. Despite tremendous information available online on debunking this claim, even educated parents tend to fall for such claims,” Dr Ramesh Konanki, Paediatric Neurologist at Rainbow Children’s Hospital in Hyderabad, said.
He added that many therapies offered are not only dangerous but are also extremely expensive and illegal as well.
Citing the example of stem cell therapy which has not been approved in India for general use, Dr Konanki said, “Cure for autism through stem cell therapy is quite rampant. It is illegal in India and most of the countries in the world, to offer stem cell therapy for autism. It is approved only for some cancers. So any neurological disease offering stem cell therapy is not legal. It is not scientifically proven and is being used only for experimental purposes.”
Dr Konanki explained that stem cell therapy is not only expensive but there are reports of people developing problems in the spine because they inject these cells into the spine.
“There have been cases of tumors developing in the spine. It is not just about the money. It is also harmful,” he said.
Hyperbaric oxygen therapy is another method used by the practitioners of alternative medicines. It involves giving oxygen at a high pressure to the child in a special chamber. It is claimed that increased pressure and oxygen could reduce inflammation and improve neurological function.
Dr Konanki said the environment inside a hyperbaric chamber might be uncomfortable for some children or anxiety-inducing due to the closed space, the noise, and the need to remain still for an extended period. For children, especially those with autism who might have sensory processing sensitivities, these aspects of the therapy can potentially be distressing or overwhelming.
“This is again a not scientifically-proven method that has helped a child with autism. It can also be harmful. Whenever oxygen is given at a high pressure, it is like you are underwater. Imagine if you are underwater, say 200m to 300m deep in the sea, you will get an air embolism. Air bubbles will form in the circulation and it can cause adverse effects on the heart, lungs, and brain. So there have been instances which are not reported because nobody wants to report them,” he added.
Doctors also spoke about homeopathy medications which claim to cure autism. In homeopathy medications, doctors claim that the content of the mixture is never known and it could include heavy metals. When it is given for a longer duration, it accumulate in the body and could be extremely harmful.
Yet another therapy that is now upcoming in some cities like Bengaluru, Mumbai, Delhi, Hyderabad, and Chennai is bleach therapy.
Doctors claimed that bleach therapy, particularly the use of chlorine dioxide (often marketed as “Miracle Mineral Solution” or MMS), for treating autism is a highly dangerous and debunked practice. It involves ingesting or administering enemas of chlorine dioxide, a solution that when used as directed by proponents, forms an industrial bleach.
“This ‘therapy’ has been promoted by some fringe groups claiming it can cure autism and some other conditions. It is crucial to understand that there is no scientific evidence to support the use of bleach therapy in treating autism. Health authorities across the globe, including the US Food and Drug Administration (FDA), have issued strong warnings against the use of such products. Ingesting bleach can cause severe harm, including nausea, vomiting, diarrhea, severe dehydration, and potentially life-threatening complications,” Dr. Ravikanth said.
Doctors stressed that any treatment that sounds too good to be true, especially those that promise a “quick fix” for a complex condition like autism, should be approached with extreme caution and skepticism.
Sangeetha Vasudev (name changed) from Bengaluru agreed that each parent and their decision is independent and depends on what they believe is right for their child.
“As a parent, I have gone through many of these therapies. There were a few sporadic changes here and there. Finally accepted that the condition is an ongoing journey with its ups and downs at different stages of development. I am a happy parent now,” she told South First.
Speaking about her observations in the US and UK, a special educator told South First that she had read about fecal transplants in a newsletter of the School of Nutrition at UC Berkeley close to two decades ago.
“Given that autism is highly correlated with gut issues, it seems logical to believe that there would be fewer gut issues and therefore the individual with autism may be more comfortable, leading to better outcomes. The leaky gut theory has some roots in science,” she claimed.
Citing the experience of a friend with a daughter with autism, she said the UK did not offer evidence-based therapy.
However, she advocated skilled therapy with parental involvement and acceptance. “If something works for an individual, the parent would hardly care if it is scientifically proven or not,” she added.
Agreeing, another parent Radhika Jain (name changed) said her son had undergone several of the above-mentioned therapies, primarily targeting his gut health. While some made a difference, some didn’t.
“Even a little change can make a lot of difference. I wouldn’t care if it is evidence-based or not, as long as it works for my child. What works for my child may not work for another.
Some parents agreed that early intervention is important. “I have personally seen dramatic changes and it makes logical sense as well to go in for early intervention. I know that neonatologists at PGIMeR can see signs of possible autism in babies as young as a few months old,” she said.
The doctors urged all not to heed therapists who claim to ‘cure’ autism. The experts recommended consulting the child’s paediatrician and getting the child evaluated by a trained, certified specialist at the first red flag the parent or the doctor notices.
The doctors also called for better regulation and transparency in the therapy community. They suggested that the practitioners should be made to display their certificates so that parents could make informed decisions.
The cost for early intervention, if it is coupled with occupational, speech, and behavioural therapies could range between ₹1,000 and ₹1,500 per session. If the intervention is done by three different therapists, then the charges will be much higher.
“This is a constraint for people living in the rural areas or peripheries,” Dr Ravikanth opined.
Other than displaying the qualification, doctors said that the therapist should have undergone the required course.
They suggested parents ask for the therapist’s BOT (Bachelor of Therapy) or Masters of Therapy (MOT) certificate.
Meanwhile, Dr Sivaranjani Santosh requested parents and doctors to be extra careful while making decisions for children with autism.
The National Health Service (NHS) in the UK has listed several ways to spot fake treatments. The warning signs to look for are:
(Edited by Majnu Babu)
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