Dr. Samir Dalwai on Autism and Child Development

Based on your experience, what is your perspective on the rising incidence of autism and the factors contributing to it?

Well, there’s no perfect answer to that but I’m glad that all of us are thinking along these lines and we should not give up thinking to find out what actually is going wrong.

In the last 21 years of my work and my experience with thousands of children and families, what we have observed is, there is one feature common to all children, at least at the beginning when the children come to us at the age of around 2 and a half or 3 and a half or 4 and a half years and that feature is basically a poor engagement with people and humans around, and too much of engagement and obsession with objects around.

Though the complaint that they come with, that the parents notices my child is not speaking, though he’s 2 years, 2 and a half years, or my child is running around, they perceive that as hyperactivity or they may have been pulled up from the school for this, what I have seen commonly in all these children is a poor human engagement and too much of engagement with objects.

So, the child who comes in here, it’s not about the speech, I’m looking at his behavior and his human engagement.

It’s very poor, not just with me but even with the parents.

And the awareness, the fact, out of the fact, who are around me, and typically, uh in a doctor’s clinic, the child would be more aware and wary and scared of the doctor, typically.

So, that is lacking and neither is a child very close to the parents at the time.

There is no stranger anxiety.

What it led me to believe is, that perhaps the first thing that’s goes wrong is the fact that the child is not engaging with humans but engaging too much with objects.

So what could that lead to?

Well, of course it leads to the fact that the child is not giving you eye-contact, he is not engaging with you.

He does not respond to name call, when you call out to the child, which are the common symptoms, which when we ask the parents, some of them may say that.

But this lack of human engagement prevents a child from paying enough attention to the parents or family.

A child who does pay attention to the parents starts observing what the mother does or the father does.

For example, if the bell rings, the mother would go and open the door.

The bell doesn’t ring, she would not go and open the door.

So the child learns what to do where by observing people around him, even in the first year of life.

So it’s not about how to open the latch or close the latch, it’s about when to open the door and when not to open the door.

So, this is the second phase that the child is picking up, the second milestone, so to speak, about how to behave when – that’s human behaviors.

Around 9, 10 months, the child’s brain, and we know about neuroplasticity today, that the brain develops so much by learning these two areas that he’s now able to make sense of this.

That when the mother does this, it’s followed by her going away, or when she does this, I don’t need to look at the hand and smile, like maybe a two-month old child would, but by the time the child has learned human engagement and human behaviors, the brain uh with neuroplasticity develops in a way that the child is able to make sense that this is not a movement of the hand, this is a message that ‘look there’.

Understanding somebody else’s message is communication, and it is initially non-verbal communication but a good one full year of human engagement, learning human behaviors and learning and interpreting human non-verbal communication makes it easier for the child to understand spoken communication, that is verbal communication, so typically you would find a child picking up verbal communication by 1 and a half, 2 years of age in a meaningful purposeful manner.

So what we try to tell parents, it’s not just about saying a word, it’s about IMP.

IMP stands for Interactive Meaningful and Purposeful.

There’s no point the child just repeating the word ‘mamma – mamma – mamma’ all the time, unless he’s looking at the mother, there’s a purpose behind calling her out to it, he needs something or he needs her attention, so this IMP is very important.

What we have found is if the first milestone or the first developmental process, that is human engagement, is deficient, all the others will not develop, it will be like a domino effect, the child will not learn the correct behaviors, they child may not learn non-verbal gesturing and pointing and the child may not learn the right speech.

But there’s also another thing happening, with too much of attention to objects, the child starts picking up patterns because all objects are either made in pattern or they run in patterns or they’re arranged in patterns.

Now we believe that this child becomes drawn and influenced by objects and becomes a pattern master.

So if he sees or he’s exposed to the same pattern again and again, it’s easy for him to copy the pattern without understanding why humans use that object or that pattern, and hence, if you teach the child to turn the lock this way and the latch this way, he may be able to do it perfectly, but then he doesn’t understand when to open the door and when not to open the door.

So if the child likes the pattern, he will end up doing this throughout the day.

For example, you have children who come in they’ll keep pressing the switch on and off, on and off, looking at the fan, they don’t know the human purpose of putting of, you know, switching it on, which is when you need a light or a fan and to switch it off when you don’t need it.

They are only interested in the pattern of it happening and they are interested in that aspect.

You end up calling that as Repetitive Restricted Behaviors.

So this entire conundrum of defining autism as a neurodevelopmental disorder marked by impairment in social communication and interaction and Repetitive Restricted Behaviors, we need to have a relook at all of this.

Perhaps there is only one thing that goes wrong and that is the human engagement, but when we look at it as a problem of communication we are drawn to offer communication advice and we may tell the parent that ‘speak more to your child’, and if the parent keeps on doing ‘say mamma, say mamma, say good morning, say good evening’, the child will not understand it because the child has not gone through the phases needed to understand speech.

I mean, none of us speak at birth, is it?

Why do we not speak at birth?

We need to develop these stages.

Nobody runs at birth, you need to head hold, roll over, sit, stand, walk, only then you can run.

So similarly, if you directly start imposing speech, the child may either ignore it totally or may pick up some patterns and keep repeating them ad-nauseam without knowing when to say good morning and when not to say.

So, real speech is not what comes out of your mouth, real speech is knowing when to speak and when not to speak.

And this can come up only if the child has gone through the earlier stages and understands and is able to be interactive, meaningful and purposeful.

Basically as humans we evolved with social engagement.

We lived in, like, millions of years back in communes of 100, 110 people, 120 people, living off the land, paying attention to each other.

We were designed, evolutionarily, to live with each other.

Unfortunately, over the last 100 years, 50 years, especially the last 10, 20 years, we have completely departed from this.

Today’s world, the child hardly gets opportunity for human engagement or social engagement but there are just too many objects and too many patterned, structured things around.

It’s nobody’s fault individually, it’s overall the way civilization is going because of, you know, the way entire, our societies have evolved.

Today you have a 3 month old child who hardly has anybody in the house but is shown a tablet so that it’s easier to feed him quickly and be done with it, and so that the child also eats well, because the mother is very worried that the child eat well.

So, right at the beginning when you’re 3, 4 months old, you are not getting the human exposure that you got about 50 years back or 30 years back, or even 20 years back but you’re getting too much exposure to recurrent patterned uh structured things and that is making the children more structured, more pattern and that is worsening their poor human engagement.

Now, there are two things here: if you don’t have a gene for autism, and I’m saying this very clearly, it’s a genetic problem, if you do not have the genetic trait, the moment you take the TV, mobile away, the child will again start looking back at you, which has led to this unfortunate term being called ‘virtual autism’, which I don’t subscribe to, but yes the child may get too drawn towards the TV and may start ignoring you, but the moment you stop it the child should be able to get back to any other uh way, any other child, the way any other child behaves.

A child who has a genetic trait of autism, and I believe this is a very common trait, it has existed for millions of years, the child who has this trait and is now being exposed to too much of pattern learning, too much of structured learning, at a very early age, even in infancy, and at the same time lacks that amount of free, unstructured fun-driven human engagement and human play, is now manifesting the signs of autism far more.

So I believe it’s actually an epigenetic problem, where the change in the environment around the child in early infancy or in toddlerhood is now driving the child more to manifest the symptoms, which was not happening maybe even 50, 40 years back.

So I believe the solution is in we understanding how human societies are evolving, how communities are evolving.

The poor mother has no support.

Usually it’s a single, nuclear family, both parents working, you have to work to support yourself, so the solution is not in the family or the parents, the solution has to come from society and community as a whole.

The paternal and maternal aunts, all of them are very important, because unless you have the whole village, and you always knew that it takes a, you know, village for a child to grow, it takes certainly a village and a, you know, members around to help the child learn the steps of normal social human behavior.

Unless you’re able to handle people in your neighborhood, people in your family, how is it that you’ll be able to handle people in school?

You might be, some children might still be able to do that but it puts tremendous pressure on the child and it ends up making the child behave in a pattern systematic way.

So, we need to prevent that.

What are a few things that parents of children with autism can do to interact with their child?

Three things, if you ask me what the parent (of children) with autism needs to do, the most important thing is, keep the TV, the screens, too many toys, allowing the child to be in his own world, play on his own, stop all that.

Instead sit down with the child and draw the child’s attention towards yourself by doing all kinds of funny things, all kinds of funny gestures, I mean playing the fool, behaving like a joker, whatever draws the child’s interest towards you, rather than the door or the, you know, inanimate objects around you.

It is more important that the child looks at you, rather than do the shape sorting or the color mapping.

You may use that a little bit to get the child’s attention towards you, but make no mistake about it, there is no great value in teaching the child shape sorting if the child is not interacting with you, for you, for the interest between the two of you, not just because you’re giv…going to give him shape sorting and if the child, parent is able to do that, then you’ll find the child being drawn more towards a parent and then you gradually start helping the child with the behavior, and then the non-verbal communication, the verbal communication will follow.

So, the most important three things to do is, keep the screens away, keep too many objects away, don’t engage the child with things which make him look away from you, instead, second thing is, sit down with the child and make the child look at you, and third, do so many funny activities and so many interactive engaging things as the child enjoys looking at you, don’t make it like a stressful thing for the child.

And finally, there’s no rule that only the biological mother has to do it.

Any human being can do it.

And hence don’t expect the poor mother only to do all of this.

You need everybody.

The father has a different way of engaging, the mother has a different way.

The paternal aunt has a different way, the maternal aunt has a different way.

All of this is needed, but start with human engagement.

I have, for example, I tell parents that when, today, if you have the child, you’re on the laptop, the child enters the room, what does the child do?

The child pushes you away and pulls a laptop.

What is it that I want to achieve first?

Whatever it is, a month later, when the child enters the room, I want him to push the laptop away and pull you, come, play with me, have fun.

This is the first thing that we want to develop in the child, not speech directly or reading-writing or reciting Shakespeare, that will come, that will come as it comes in every child, but not if there is no human engagement.

So, that is what I think is very important to keep in mind.

What would you advise parents of children with ADHD, intellectual disability and cerebral palsy?

So, for ADHD, functionally how it looks to me is that the child eventually has a problem of poor self-regulation, he’s not able, or she’s not able to regulate herself or her own behavior, his own behavior, appropriate to the social situation.

Just running doesn’t mean the child is hyperactive.

Just running around the place doesn’t mean the child is hyperactive.

If you are on a football field, you ought to be running around, if you stand like this in the football field, that’s abnormal.

But the moment you finish your game and you come back in the class, you’re expected to sit down, socially, and that’s where you should sit down, you should be able to pay attention to the teacher etc.

So it’s not about the child’s physical, you know, what you see is hyperactivity.

It’s whether the child is able to understand and regulate how to behave where.

What we advice the parents is start by making a schedule for the child, and for yourself, and have a written down schedule and make sure gradually you get your child to follow that schedule.

The schedule depends more on the sequence of things.

For example, the child wakes up in the morning, the first thing to do probably would be to brush your teeth, then wash your mouth, then go to the toilet, take a bath, wear your clothes, have your breakfast, take your school bag, so try and put sequences in the schedule.

You can’t say that brush your teeth for 2 minutes only, not 3 minutes, that’s not what I mean, but the sequence is very important.

For example, if the child is now habituated to having breakfast before leaving for school, never let the child go without breakfast.

Don’t change the sequence.

With this, the child is gradually able to regulate herself or himself in a particular manner that is needed.

At the same time, don’t have a tight schedule for every minute of the day.

Let there be plenty of time for free play or unstructured play, so probably that’s in the evenings.

And the other part is, cut down too, cut down too much of screen time, because watching these animated violence and these behaviors, sometimes tends to influence children, so that’s what I would say.

Intellectual disabilities, like we described earlier, the child is processing things or catching up on things slowly.

So, you need to start at the level at which the child has achieved rather than what the child is expected to do in school, depending on the, his, his or her age.

So, always look at the developmental age, not the chronological age.

And hence start working at what the child has achieved, make sure that’s mastered, and then go to the next level, not what is expected where the child has reached, which grade in school.

So it’s more about mastery of each level, before you even attempt the next level.

So, sometimes parents come to me, they not being able to come back later, there’s some village somewhere, ‘my child is in class, uh, 5th, but he’s not able to perform in the class, but I won’t be able to come back for any further professional training, what can I do in this one consultation?’

I tell them the simple thing that you do is take all the books from junior KG and show it to your child.

Let your child read and let your child interpret it to you in your vernacular language.

So if you speak Marathi, let that boy read it in English and explain it to you in Marathi, that means the child has understood it.

Stop where the child stops, stay at that level and help the child understand.

Suppose he reads up to grade one, he can’t read beyond that, and he may read but he’s not able to translate it to it, wait, he needs to understand it enough to be able to translate it to you.

So then, wait till the child masters grade 1 book, then introduce grade 2 book, then grade 3 book.

Now obviously you can’t spend a year doing that because a child has to catch up, but if you give focussed attention to grade one, he will pick it up faster, the challenge is, you are wasting time on grade 4.

Again, cerebral palsy is a situation where you need to have a developmental pediatrician or a pediatric neurologist or a pediatric orthopedic surgeon, a very good physiotherapist and a good team assisting you.

So the first thing is, select a very good team.

Set goals with the team, help the team set goals according to what is suitable for you, possible for you, they will also understand that.

And then, keep working within what you have been advised to do or the plan you have made, and the same thing follows for development, it is mastery of one level before you attend the other level.

Some child may pick it up very fast, some child may pick it up slow, but stay attuned to your developmental team.

In cerebral palsy, now we know there are various newer modalities, there is surgery, there are injections, and there are so many other things which have come in.

Be very clear about what is needed for your child, have a documentation of it, so that you can monitor it whether it is succeeding or not, that’s what I would advise.

What is the role and significance of education for children with disabilities?

So, I have a little different take on it.

The problem is this is the only focus parents have at times, because the only thing they want is my child go to school, because very often they have a genuine problem, both the parents are working, there is no joint family, there’s no grandmother or aunt at home, who’ll take care of the child?

So school has become, for the parents and families and rightly so, the final solution.

What is more important is, according to me, not just whether your child is able to read and write Shakespeare, what is more important is, does your child know or has he learned how to behave with other people, with different people in different settings?

Is the child able to fend for herself or himself in terms of behavior first?

If he has achieved that in behavior, then the next step is communication, and then the third step is academics or reading or writing.

So I want parents to understand that there is a continuum, there is a step by step stages, it’s not only one thing, don’t stay at the base, that is the bottom, that is human engagement, neither focus only on the top, that is reading and writing, without looking at that.

So if I had my say, I would focus only and only on human behavior.

For me, the child who can stay for 2 days with the aunts, without the mother being around or the mother telling the aunt what to do, and the child can stay for 2 days, and he knows what to do to make the aunt happy and he knows how to handle the other aunt, and both the aunts feels the kid is devoted to them, but the child knows that ‘I have to do something different with one aunt, I have to do something different with the other aunt’, that to me is a perfectly well adapted child.

Now whether he goes on to become a doctor or engineer is pointless for me, or about the actual academic excellence is, it’s very important, I mean, all of us are educated, but what is more important, you cannot replace uh this social behavior with family, with people, with neighborhoods, with society, with children in the school, with only academics, and hence school to that extent is very important because it helps the child engage with a variety.

So, I would say, the problem is today, societies are breaking up from this sense.

We are all becoming unitary and isolated and my friend Ajay Gudavarthy, he’s professor at JNU, says, ‘together but separate’, to quote him.

This together, for show we’re living in a complex with 200 flats, nobody knows each other or talks to each other.

This is a very very very dangerous thing, that our society is full on embarking towards.

So there’s no point in blaming anybody.

People tell me, ‘Samir, this is never going to happen, things have changed, we are never going back’.

Maybe, but I would wistfully always think and hope that we will be able to bring in that element of family, uh, relatives, neighbors, neighborhood and community and the school, all together, rather than only focussing on one aspect, that could be academics.