Autism Spectrum Disorder (ASD) has emerged as one of the most significant issues for parents and society alike, yet it is manageable through a variety of medical interventions.  However, when people around autistic children behave differently and stigmatise them in public places, ASD management becomes more complex and difficult to manage.

This humiliation not only hurts the parents and autistic children but also demonstrates a lack of awareness.
Drug Today Medical Times Correspondent Rohit Shishodia spoke to Prof Sheffali Gulati about ASD, its symptoms, prevalence, prevention, diagnosis and approach of people towards the affected kids.

Dr Shafaili Gulati is the Professor and Faculty in charge of Child Neurology Division, Department of Paediatrics, Delhi-AIIMS. In 2004, she was part of the team that launched the first DM (Paediatric Neurology) programme in Southeast Asia. Under her supervision, 16 students have completed and nine are now completing the DM programme.

Her research interests include neuro-developmental disorders such as autism and cerebral palsy, as well as multidisciplinary rehabilitation and public health aspects, neurometabolic disorders, epilepsy (including dietary therapies in intractable epilepsy), neuromuscular disorders, electrophysiology, and neurogenetics.

Here are the excrepts...

DTMT: What is Autism spectrum disorder and what are its symptoms?

Prof Gulati: Autism spectrum disorder (ASD) is a developmental condition in which a child often has problems in social communication and exhibits repetitive patterns of behavioural interest.
Children with autism have fixed interests because they have sensory issues owing to developmental differences in their brains. They are usually extra sensitive to sounds and try to plug their ears by covering them with their hands even if there is no sound. While some children keep moving their heads sideways in an unusual way, others suffer from delayed language development.

DTMT: How autism can be identified?

Prof Gulati: It is cause for concern if children do not speak two to four meaningful words, or if a child does not begin babbling (badbadana) at one year, does not speak two meaningful words at 16 months, or is unable to speak at 24 months of age.

Also, even if you call them, these kids do not make eye contact and pretend to be deaf. They are solely concerned about themselves. For example, when they are playing with other children, they do not interact with them. They will engage in their own game.

They do not express their emotions and are uncomfortable when cuddled. You may have seen that normal children point their fingers towards an aeroplane to others, while, children with autism will show it by holding their mother's hand and pointing towards the aeroplane, indicating that they are unable to communicate their interests.
You must be familiar with the term autism spectrum disorder. This indicates that while no child has the same disease, each child's condition differs. That is why it is referred to be a spectrum disorder.  

DTMT: What is the prevalence rate of ASD in India?

Prof Gulati: This disorder is prevalent four and a half times more in boys than in girls. Its prevalence is increasing across the globe. Some years ago, it used to be 1 in 156 in US, but as of March 24, 2023, it is now found in 1 in 36. This rise cannot be solely attributed to rising awareness but to the actual rise in numbers in absolute terms.
In India, we also carried out a survey in 2011 in which I served as the network coordinator. We took samples from rural, urban, hilly and coastal areas, and based on our findings, we estimate that 1 in 89 children suffer from ASD in India, and we believe that the cases are rising.

DTMT: What are the causes of rising ASD?

Prof Gulati: The causes of ASD remain an enigma because we are yet to determine the exact cause. ASD is caused by a combination of causes; while genetics play a key role in the disease's development, environmental factors also play a significant impact.
Environmental variables, capable of influencing genetic makeup, such as exposure to certain pollutants during the third trimester of pregnancy, are thought to be one of the causes of ASD.

DTMT: What are its treatment options or how can ASD be managed?

Prof Gulati: Currently, the mainstay treatment remains behaviour intervention, which includes various techniques and standard applied behavioural analysis and structured teaching aimed at sensory integration. We also make home-based programmes through which, we strive to empower parents.

We released a book around four years ago that emphasises different aspects of ASD, and only in a few conditions medicines are needed, where an autistic child does not pay attention, displays excess hyperactivity, aggressive behaviour or faces sleep onset latency.
During this condition, the child takes too much time to fall asleep, and a medicine called melatonin is given half an hour before putting the child to sleep.
One point should also be noted that in India children sleep with their parents while in Western countries, they sleep in separate rooms.

Generally in India, many parents get back to work after putting their child to sleep like switching on computers which interferes with the child’s ability to sleep. What I mean to say is that sleep hygiene should not be ignored.
Recently, we conducted a study in which we found that 77% of children with ASD were found to be suffering from sleep problems. But when we conducted a polysomnography test, we found that all ASD children were found to be having some sleep problems and those who had sleep problems also displayed certain behavioural issues.  Along with it, the quality of life of the child and his parents and siblings also gets affected.

DTMT: Can genetic tests diagnose autism?

Prof Gulati: Although there is no calrity on genetic tests, there is a genetic predisposition. As I previously stated, ASD is 4.5 times more common in boys than in girls. If there is an autistic boy in the household, the chance of autism in the following pregnancy is 4%; if there is an autistic girl, the risk rises to 7%; and if two children are autistic, the risk rises to 25% to 35% in the subsequent pregnancy.

Moreover, in 15-17% of the cases it has been observed that there is a history of personality disorders in the family.
As of now, the diagnosis of autism is clinical evaluation. For this socio-cultural adaptive tools have been developed and AIIMS have developed tools as per approved guidelines.

DTMT: Tell us something about research work you are doing to prevent or manage autism.

Prof Gulati: We conducted a study, which found that a father's lifestyle, age, stress levels, the childbearing age of the mother, pesticide exposure, and certain medications that mothers may take are some of the key risk factors for developing ASD.

It is well known that certain environmental conditions influence gene expression, and if we can detect them, they could be potential intervention targets.

Music therapy is a harmless thing as it cannot harm anybody. For that, we are in association with the Indian Music Therapy Association to develop a system of active and passive music packages.
It should be noted that whenever people search for autism they get seven million hits on the internet. So parents try to follow random advice that is often not supported by evidence. In this regard, my advice for them is that they have to wait for evidence.

We have to generate evidence like we are doing for stem cells. Recently we have got a fund from DBT for a project in which we are studying part of stem cells in mice to find out if there is an improvement in behaviour. If it works then we will try it in humans. What I mean is it is in the research project and if the parents want to help they can participate in the research.

We are also involved in conducting a genetic study for the last five years and when we get the data we will be in a position to identify the genetic defects in the Indian population.

Along with it, we are also collaborating with IIT-Delhi and made many devices through virtual reality, augmented reality and artificial intelligence, which are undergoing testing currently. We are also planning a technology on the interaction of children with robots. We are analysing how a child behaves with robots. Along with it, we are also making robotic toys and apps so that children’s prediction and analytic skills can be improved.

We are also conducting a research on metabolic and biomarkers factors and trying to understand how to prevent incidences of ASDs in future. There has been a lot of advancement in intervention. but there is a total no for stem cells.
The management of autism in children should be family-centric. It is often expected that mothers should leave their careers and take care of the affected child but if a mother is regularly with the child it will affect her mental health.

We conducted a study where we found that 78% of mothers of ASD kids were clinically depressed. If a child is found to be suffering from ASD, it is indeed shocking news for the parents! However, if only the mother is left to take care of the affected child, she will be unable to recover from the stress and over time she is bound to be clinically depressed herself.

Therefore, we often educate parents stressing the fact that the management should be family-centric, where everyone needs to chip in.

DTMT: Is autism a lifetime disorder?

Prof Gulati: We have to understand that once autism develops the person remains autistic for life but like cancer, in ASDs too there are remissions meaning that the main issues and problems have settled but the disease has not been cured.

It is a long-term thing but the main thing is we cannot give up and every problem that may crop up has a solution.

This year’s theme of Autism Awareness Day is Transforming the Narrative Contribution at Home and at Work in the Arts in Policymaking, which means every place you have to include them. We have set a motto for a neuro-inclusive world for all. We have to understand the importance of inclusion in the society. We should refrain from seeing what an autistic child cannot do, but we should see what a child can do.

Parents of normal children have to realise that they are not doing any favour to anyone. Every human who has taken birth has an equal right to life but what is important is the humanistic aspects of life and de-stigmatisation.
Any medical condition can become a disability because of environment as it has twofold effect, first, the physical effect, such access to wheelchair or separate washroom or different facilities for visually impaired person and so on.

Second is the behavioral effect, which involves the humans around us. The attitude of humans around us makes all the difference. I think here the media can play a very important role to make them understand that nobody is doing anybody a favour as everybody has equal rights.

DTMT: How do you view society's perspective towards autism?

Prof Gulati: First and foremost, society should realise that a child suffering from Autism is not the child's or his or her parents’ fault. Anything can happen to anyone.

DTMT: What are myths about autism?

Prof Gulati: People should realise that all ASDs are not mental retardation. It is a myth! We analysed 1847 children, out of which 80% were found to have comorbid conditions and 67.5% of them had ADHD and many of them suffered from cognitive impairment too. However, it is not synonymous.
Among the eminent people suspected or known to have been autistics, include Wolfgang Amadeus Mozart, Marie Curie, Isaac Newton, Albert Einstein, Élan Musk and Bill Gates, but that did not prevent them from excelling in their chosen fields.

DTMT: How many children (%) with autism can live a normal life?

Prof Gulati: It is a spectrum disorder, therefore, everyone will have different severity. In my experience of 26 years, most of their outcome depends on their developmental quotient or IQ. If they suffer from some low mental awareness their potential can remain low.

However, I have also seen a patient of five years who could solve problems of 12th standard physics but they are very few. They can also tell you your day of birth and solve very complex calculations in seconds.  Most mainstream and those with cognitive impairment issues can go into the mainstream and those who have issues with cognition can study in open schools.

And another thing is that those who cannot go should be provided with vocational training.

For the children who cannot speak, we have augmentative communication strategies. Everything doesn't need to require verbal communication. There are other ways of communication too. So, one who cannot speak can work on a computer and may be more hardworking than others.