Autism Spectrum Disorder (ASD) has earned the word ‘spectrum’ because autism itself is considered to be on that zone alongside varying developmental disabilities under which the child is assessed during diagnosis. It is perhaps one of the most complex medical conditions with countless disparities, ranging from appearances to characteristics and to the levels of severity. In India, this complexity can certainly be a reason for conflict in the many ways autism is treated or is ‘claimed’ to be treated.
While the chief minister’s health insurance scheme is now destined to cover treatment for ASD in Tamil Nadu, it is fair to address the several decisions that can lead to malpractices and how to be aware and informed about what is and isn’t right for your loved ones.
We are all advocates of awareness when it comes to mental health issues, but we fail to notice that sometimes public isn’t the only one perpetuating misinformation. Autism and developmental disabilities face the havoc of spreading misinformation in the greed of serving self-interests.
Misinformation and lack of proper diagnosis
When parents discover that their child is showing symptoms, their emotional vulnerability forces them to go for “doctors” who claim to “cure” the condition instead of treating it. This invites a plethora of centres, including the likes of ayurvedic and homeopathic dogmas, with their self-rated websites and “newly discovered” cures for issues like ASD.
Several such centers operate in the heart of Chennai. Truth is, autism, along with Pervasive Developmental Disorder, has no documented cure. This is not to shatter hope but to accept the right notion that autism doesn’t get cured, but it can get treated. It’s a lifelong condition affecting different individuals differently and the goal is to lessen the symptoms and improve functional capacities with quality of life.
“When Anish wasn't speaking even by age 2 we took him to the pediatrician, who did not examine for any other symptom, like poor eye contact, response etc., even after me mentioning them, and instead suggested speech therapy. The speech therapist suggested occupational therapy (OT) since he was hyperactive. Neither OT nor SP mentioned autism. What we were told then was just speech delay with hyperactivity. His special educator kept working with him based on a neurotypical child’s goals. There was zero coordination. Another OT we went to put Anish on a strict no-protein diet which made no sense but we HAD to follow it,” narrates Divya, mother of Anish who was later diagnosed with ASD and is now 7, undergoing a well-established set of therapies.
Like Anish, children with autism are also written off as having ADHD to make it less worrisome for parents, as it is less stigmatized when compared to autism or cerebral palsy. A lot of parents claim to have learned about a friend or a relative whose child grew out of autism, but it is likely that the particular child never had autism. It is pushed out by nothing but the effects of misdiagnosis. Vice versa you may find cases where a child who actually has autism is just being ignored as an inattentive brat.
Not allowing the parents into therapy
While research in parent-led therapy has shown positive results if parents are allowed to observe and learn, in India the story is twisted. A majority of therapists do not allow the parents and caregivers to enter the room where the behaviour therapy is being conducted. Reasons like ‘child might get distracted’ are given often. What ensues is a destroyed transparency within the treatment and creates rigid differences in the child’s perception of interventions.
Smruthi Nair, one of therapists working with autistic children in Chennai points out to the importance of parents being involved in therapy. “If I do not teach the parent the similar skills and structure I am using in therapy, they will be unable to recreate it at home. It increases accountability of the parents, and generates quicker improvements. It's their child, and it empowers them to be part of the structure which is important for a collective effort.”
Barring parents in behavioural treatment also creates bias which parents are unable to grasp because, firstly they are unaware of what goes on inside, which prompts ambiguity as to what behaviours they need to reinforce at home, and secondly, such ‘principles’ are intended to prevent them from ‘attaining’ any skills that the therapist is using, be it conversation or specific exercises. Latest findings suggest improvements in children once the parents are trained in reinforcement and response-giving.
Hitting the child
What is an obvious wrongdoing can sometimes be made to look reasonable, reasoning it out as ‘it is for the good’. Reward and punishments account for significance in therapy with autistic children, but sadly in India, punishments have a traditional background - hitting the child.
Some therapists do not shy away from doing that. Children with disabilities are usually victims of bullying in school and therapists hitting them in the name of punishing registers the same fear. And this is another major issue with cutting off parents’ involvement in therapy.
Sudha, the mother of eight-year-old Kirthi who was diagnosed with cerebral palsy says she had a horrible experience with a therapist in Chennai. “They basically said there was no therapy as such and put her on a swing as exercise and we weren't allowed inside the room. She hurt herself and wasn't given first aid (the therapist probably wasn't watching her) and we weren’t informed. While there was no improvement over the course of 6 months, Kirthi was growing fearful of the place. I didn’t have the courage to ask if they hit the child so we just discontinued.”
Lack of communication and sharing information
Like any profession, each therapist comes from a well-defined and ingrained school of thought. Parents believe in consensus and it is always good to get a second opinion or a third. But they are often met with a major lack of dialogue between the different professionals parents consult, given the fact that anyone could be right in their assessment. For instance, if the pediatrician (who most parents initially go to) notices symptoms of autism in a child and advises the parents to see a mental health expert, the latter is bound to have a serious problem with the first opinion.
“There are centers that compel parents to undertake all additional therapies they offer which eliminates the possibility of exploring other options, and with denied access to observation, it worsens the situation. And when parents do consult other therapists, there is no dialogue between the two which can summarize a definite diagnosis. The parents being unaware end up spending their precious time and money. They should be counselled regarding therapies that would benefit their child, the final decision is always theirs,” says Zainab, a Chennai-based speech therapist.
The conflict is not due to the differences in opinions, but rather comes from an egoistic self-righteous spot which is very prevalent in Indian medical fraternity. With a healthy exchange of reports and findings, a misdiagnosis and following malpractices can be avoided.
Looking out for such misconceptions abolishes the risk of poor treatment and increases the chances of productive results. This is not just for autism, but for most disorders related to children, and not giving the parent the access to therapy is the most affecting part of this issue. Going with the scientific approach helps because it comes with evidence, so does the transparency. Ethical practice counts when information and the rightful responsibility is shared with specifications and doesn’t remain one-sided.
Names of children and parents have been changed to protect their identity.