With the increasing levels of awareness, I think their family doctors would probably, at least in the metros, have a sense that the kid probably has autism.

This may not be as true in smaller towns and I know that what a lot of parents do and of course, it has to be parents with the means, they go on the net and they put in the, you know, the symptoms that they're observing to figure out what it is.

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I think the first thing a parent should do is try and find out where they can go and learn about autism.

I think what often happens with parents is they jump into, ‘Okay, let me go to this therapist or that therapist’ and while there are good therapists in the country, I would say there are many more who are not really, you know, knowledgeable and parents often lose a lot of time.

So, if they understand autism and they learn what autism is they can see whether what is being done is really helpful for the child or whether it is actually harmful sometimes.

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So, when people say therapist, they are really talking about a special education person.

Uh sometimes they could be talking about a speech therapist.

But the challenge here is that speech therapy is not something that will help autistic kids because you have to do something more and what we would call ‘communication therapy’ because a lot of autistic children, they have speech, it's not that they're having any difficulty with speech.

But they are not using that speech to actually communicate.

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So, what happens is that it's not, it’s not so much about the ability to speak.

It is more about the understanding that to interact with the world, I can use my speech, I can use my body, I can use my mind, I can use my hands like I'm doing right now to communicate.

So, people with autism often do not get that this is what I can do.

I mean if I don't have speech, I could do this to say, you know, come to me, right?

Of, to a autistic kid, this would not occur to them, right?

So, the other thing that happens is to understand how to uh interact and react with other people at the social level.

That is something that is often difficult for people with autism.

The interesting thing is that a lot of autistic people who are more independent are very comfortable interacting with each other.

But they have difficulty in interacting with non-autistic people.

Even those who are not that independent, you will have autistic people sitting together very comfortably, not communicating through speech but just communicating in their spaces.

But they will have difficulty with people who are not autistic.

So it is more about a difficulty in communicating with people who are not autistic than in communicating amongst their own community.

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Uh I wouldn't say that there is an age when you can detect them uh easier but the thing is that you can identify uh whether a person has autism or not at any age.

And at an earlier time only those individuals who had, what was seen as very typical autistic traits like flapping or not speaking, were the ones who got a diagnosis which has now changed.

Now you have a lot of people who are very verbal, children, who have a lot of speech, fluent speakers, enjoy being other…around other people and have autism.

Those are the individuals that are also getting a diagnosis.

And the other thing that is happening now is that a lot of adults who have faced a lot of challenges through their lives and because of the Internet are beginning to realize that perhaps they may have autism, who are coming forward for a diagnosis and many of them are indeed getting a diagnosis of autism.

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Um, you see, uh, you know actually, this is a question that I think a lot of autistic people themselves might be able to answer very well.

Having said that, you know, one of the common perceptions is that autistic people are wonderful in lT, (Information technology) right?

Um I am not that certain about whether autistic people are wonderful in I.T.

I think the current generation are very tuned into IT, right?

And because IT is something where you do not require too much interaction with the neurotypical world.

So, a lot of autistic people do very well in that, right?

Uh however, there are individuals who have skills just like the non-autistic population.

So, you have amazing singers, you have terrific artists, you have actors who are autistic and I think it is uh important for parents to do two things.

One, watch out what it is that the kid really enjoys, right?

And then take it from there.

However, I may enjoy painting a lot, I enjoy singing a lot, I am a lousy singer.

So just having an interest does not mean that I have a great skill in that.

But parents could also expose their children and that possibility is happening now.

It did not happen in the generation of, as much, in my son's generation.

But it is happening a lot now.

So kids are getting the opportunity of being exposed to things like sports, like swimming, or you know, roller skating or golfing and some of them turn out to be very good at that just like the typical population does.

So I think the thing to do is exposing them to lots of other…Swimming, these are you know sports that are played independently and where you do not need a lot of social interaction and lot of autistic kids are really really good at that, right?

Lot of them are terrible at it but a lot are very good.

So I think what parents have to do is try and expose them to as many experiences as possible as we would want to do with a typical kid and then see what they are good at.

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So, there are a lot of autistic people who have done well for themselves and who are very talented.

So, you have the painter Amrit Khurana who has held a number of shows and sold paintings.

And I am the proud owner of a few of her paintings as well.

There is Adi Swaminathan who's a student at the Baroda School of Art.

He has got in just on his skills and ability and I think he is in the third year or something like that.

Uh there’s Pranav Bakshi who is a model.

There are of course a lot of actors like Anthony Hopkins and Dan Aykroyd.

I am sure there are Indian actors who are also autistic that we do not know about because the stigma that is still attached to dis…uh disability in our country prevents people from speaking out.

A particular disability that is a mental disability.

There is an even bigger stigma.

And in fact, there are professors and doctors and lawyers…

So you also have Tito Mukhopadhyay, who’s a poet and who’s been writing poetry from the time I think he was 10 or something like that.

Uh corporate people that we know who are autistic.

Uh who, you know, they may or may not be willing to speak.

We don't know we have to take their permission.

But there are a whole lot of very successful autistic people around.

They have their struggles.

They are constantly trying to pretend and behave the way they, people would want them to behave.

So, this is a huge strain because they are trying to, uh, you know, it's…it’s like somebody with cerebral palsy trying to pretend who has also spasticity trying to pretend that I don't have spasticity.

So, it's the same thing, right?

So, somebody with autism trying to pretend that I understand the social rules and all that.

So, there are a lot of challenges that they face but they are there, are a lot of very high-achieving successful autistic people around.

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So yes, there is a huge challenge that autistic people face which is being autistic.

Because when you have autism the way you interact with the world the way you understand the world essentially that is what it is.

Your way of understanding and experiencing and interacting with the world is different.

And people are not willing to accept that because they do not see anything clearly, visually that tells them the person has a disability.

So, they are constantly expected to act normal.

Now they have autism, they can't act not autistic, that is the biggest challenge that they face.

Whether it is in education, whether it is in employment, whether it is in life and that is the change we are trying to bring about.

So, for instance in the school, if a child has finished his work and then is feeling a little bit anxious because the others are still working, the kid may want to flap a little bit.

But there are strategies that the school could use.

They would not think about that.

All they would do is say ‘don't flap’.

Now he is flapping because he is feeling anxious.

So, if he is not doing what helps him to deal with the anxiety, then maybe he'll start rocking, right?

I need to deal with my anxiety in some way or I might start making a noise.

So, people do not understand that, though things that they do is what autism is about and of course, if you understand that and if you make the environment autism-friendly, then they may not have to do that.

So, give them reasonable accommodation.

So, if a child finishes his work and gets anxious waiting, all he may need is perhaps a card that says ‘wait for all to finish’ so that that visual tells him ‘I wait’.

That is always there on the table.

Or there could be a little work system that says ‘finish your work, read your book’.

This is simple accommodations that can be done.

But those are not done.

Instead they are always expected to not be autistic and that I would say is the biggest challenge.

So, a lot of the, what we call stims that autistic people do whether it is flapping or whether it is rocking, all of us, many of us, I wouldn't say all but many of us also have different stims.

In fact, right now I am constantly moving my toes, right, because I am sitting here and talking and I have difficulty in sitting for very long.

So, I am constantly moving my toes in order to help me stay grounded and talk to you.

Uh because I do not have autism, I know, I have developed something that I can hide and do, right?

Now when I have autism, I am a very open person, I do not understand that I can hide and do something, right?

And you can't always hide and do stuff.

For instance, I'm constantly moving my hands when I’m speaking, I have to do that in order to speak.

If you tell me ‘don't move your hands’, I will not be able to uh, you know, be as coherent as I am being currently, right?

It will impact the way I am speaking.

But if I have autism and I am not doing something that non autistic world, the neurotypical world sees as normal, they see what I am doing as normal, therefore, I am allowed to do that.

Just because I don't see this as normal and I don't see this as normal, right, therefore, it has to stop.

So basically, the world has to accept that we have a diversity of people, right?

People do different things in different ways and if autistic people instead of moving their hands the way I am doing if they need to do something else, why can't they do that?

What is so terrible about that?

Why do we have to constantly restrict them?

And we can sometimes, like I, you know, somebody could tell me that you know, instead of moving…I have told my son so often that, you know, when you're going out, I know you need to do that, maybe you can put your hands in your pocket and do it when you get home.

We can tell the kid, ‘you know you can do this when class is over’.

Give them a visual saying, ‘do it when class is over’.

Give them alternatives that they could do instead, and see those who are much more independent they are constantly masking.

And it's very tough for them.

They are constantly pretending.

Those who are not that independent, we can give them these kinds of visuals to help them.

And they are doing the same stuff that we do.

Just that what they do is something that the neurotypical world is not so comfortable with.

So, we label it as bad.

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So, um, so one of the things that happens as soon as diagnosis is there, parents start running with their kids through the day.

They are going to a speech therapy, occupational therapy, this therapy, behavior therapy etc etc etc.

And the child kind of ceases being a child to them.

That is one thing that is not very helpful at all.

And parents often say ‘oh look because I did this the child learned all of this’.

Actually, if they didn't do that, he would have learned a lot more and they don't realize that because you cannot cease seeing that as a little human, not somebody that you have to fix and make normal.

So that is the first thing that parents don't want to get out of their head: Making them normal.

They are autistic, their brains work differently.

The brain perceives the world differently, that is not going to change, right?

So as quickly as parents can come to that understanding, they will stop doing this.

And as long as that understanding is there, parents will keep trying to seek out all kinds of random treatments, right?

So, they will take them for…uh they will put them on diets and they will put them on oxygen therapy and all kinds of stuff that is not really useful.

As far as a diet is concerned, all the kids are being put on, you know, a gluten-free and casein-free diet.

There are autistic people, just that there are non-autistic people who have a gluten intolerance.

Parents should find that out and then decide whether they want to do it instead or just depriving the child of stuff for no reason at all because somebody has told you that, you know, this is going to help the child.

And the thing that happens is that when parents do these kinds of thing, they start seeing change.

That is because you started suddenly focusing on the child, right, which you weren't doing earlier.

So, you notice every little thing the child is doing and you want to see change because you're putting in so much effort.

So, you will notice any little good change that is happening.

It's psychological, right?

And within that, there is stem cell therapy which is so abusive of the child.

Uh there is hyperbaric oxygen therapy which is also abusive of the children.

There's chelation and all of these keep waning, waxing and waning.

So they have gone for a while and they come back again and that is something parents have to watch out for.

What will work with every child and is not really practiced very much, it is very common in Europe, not so much in the US and we are very hung up on the US, you see.

So very common in Europe is providing reasonable accommodation, which is making the environment autism friendly and easy for the kid to learn from.

So, when you use a lot of structure, where you use a lot of visuals, that is really the, the, the, the foundation of learning that people should be using and within that, you can use discrete trial training.

I would not say ABA per se because ABA is very hung up on curing the child and making them normal, right?

Applied Behaviour Analysis which is uh, which is all about normalizing the child.

As long as we focus on normalizing, my child who has reached, uh, maybe a level of 7 could have actually reached 10.

But has not gone there because I am busy making my child normal and taking the autism out.

So keep in mind, and currently, see there are, there is one more thing that is, that uh could be used a lot more that is not used as much and I know that we too are not using as much of it as we should and we are trying to move to that, is providing non-speaking autistic people methods of communication.

So, we do use PECS, Picture Exchange Communication System, which is using cards and pictures to communicate.

But there are a lot of you know, uh uh uh uh, I.T related, you know, tools that you can use and those are things that uh we really need to bring in because for a long time, there was this understanding that uh if a child or an individual with autism does not speak then it's a hopeless case.

Nothing is going to happen.

You know, that kind of understanding was there.

But the reality is whether a person is speaking or not speaking does not have say anything about the mind that is trapped inside, right, and because in places where this understanding is greater, there are non-speaking people who are writing books, who are communicating, who are advocating, who are rights advocates for autism, right?

In fact, in the US there is Hari Srinivasan.

And I am mentioning him because he is of Indian origin.

He is now on the Congress…Congressional Interagency Committee or something like that.

He is a non-speaking autistic person, he uses…

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So, if I had to say, tell parents what they could do, I would say take your children out into the community, take your children out wherever they go.

Prepare them, there are things that you want to do.

So that they are comfortable when they go out and then take them out because people need to see kids who are flapping, jumping, little kids, flapping, jumping, running around, spinning.

Don't be embarrassed of your child because if I am embarrassed of my child why would the world look at my child differently?

I have to look comfortable.

I have to be comfortable with my child.

And believe me, then the world is also comfortable.

They will look and they’ll think ‘why is he/she doing this?’

But then they will look at you and say ‘right, she is very comfortable. So, I can be comfortable’.

But if they look at you and see that ‘oh, she is so stressed out so I should be also stressed out about something like this, you know, this is not nice’.

So, we give the message to the community.

And the thing is that…another thing that happens is when people very often come and ask ‘why is your child doing this?’

‘Why is he doing it like that?’ (In Bengali and Hindi)

Families tend to get very upset about it.

Why?

It's curiosity.

If there was a, and I give this example, if there was a 7-foot-blonde Scandinavian guy suddenly coming to a Village, won't you all go and stare?

Are you staring because you think he is bad?

You are staring because it's different.

I am curious.

How come his head is all white?

He doesn't look old, right?

The same way when people look at your child and they ask questions, they are curious.

They are not trying to run you down.

That would be very rare.

Usually, it's pure curiosity and it is an opportunity for creating awareness.

So rather than say, which is what often parents do, that he/she has a problem.

If you think your child has a problem, the world will think your child has a problem.

Just say he/she is different.

Say he/she has autism.

They won't know what autism is.

But at least they heard the word ‘autism’.

They got one opportunity to hear that voice, that word and next time when they hear it, they will connect, ‘oh right, that was autism’.

So never say problem.

Your child does not have a problem.

Your child is different.

Your child has autism.

Say that.

And the other thing we often encourage, we encourage all our parents to do is, we have these flyers.

If someone asks, if somebody asks, ‘why is he doing that?’, we say ‘he is different, he has autism, you can read this.’

And parents can do that.

And if they want some of these flyers, we can send it to them.

We will be happy to share with people.

Share it with, and in out of a hundred people, even if three people read your flier, you have brought about change.

That is how all this change has happened in the last 30 years because lots of people did that.

So that is what I would tell parents.

Do not be ashamed of your child.

Because when you get upset about what society is saying, that is, it comes from shame and embarrassment about your child.

So, if I want society to accept my child, understand my child, I have to lead by example, like Gandhi ji said “be the change you want to see”.

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Right, and as far as society is concerned, what I would say, if you see somebody different, be curious, it's good to be curious, that's how you learn but don't be judgemental.

Be curious and try to understand why that person is different.

So how you ask a family, ‘why a person is doing this’ will change.

Be supportive, right?

Because as a society we are actually becoming less and less supportive.

Just the way we would want to be supportive of a really senior person coming into, say, a restaurant and we'd like to support them or somebody who is having difficulty in getting onto a sidewalk.

I've seen that happen.

You know, our sidewalks are not people-friendly.

So, and there’s senior people who are needing help.

Give them an elbow, help them up.

The same way if you see a family, say having a difficult time with a child, in public, right?

Just let them be.

Don't stand there and stare, right?

You are curious, take a look, go away.

You can go and say, ‘can I help you? Can I do something?’

But don't be judgemental.

Don't be negative because each one of us will be disabled one day, right?

As we get older, we will all get disabled and we would want society to be good to us.

And the way we are in society is what we make of society.

And if I am good with other people, other people will be good with me as well.

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A lot of autistic people who are now getting a diagnosis um have access to uh services that were not there before, right?

So as a result, many of them will move to independence.

So that they would be able to manage their affairs, financial, independent, living on their own.

So, a lot many more would be able to do that than before, because they are getting the services earlier, the understanding has improved.

But there is a large population of autistic people who will continue to require a lot of support um, in different areas um uh once they are adults, right?

They would be able to do many things independently but in some things they will continue to need support.

And we really don't have any support system that comes from the state, um so, the thing that happens is that uh individuals and organizations are trying to set up assisted living where uh adults who need support can stay and be provided the support that they require.

Uh they are of different kinds.

They are of um different…What should I say?

Uh the models are all very very different.

Um but you know what, it costs money to do this.

And so, the one concern that is always there, is what happens to the really poor?

What happens to people who don't have many?

Because the state is not doing anything.

So that's a huge concern about what happens to autistic people whose families don't have the means to put them in one of these residencies because you have to take money to run it, you have to pay salaries, right?

So that's the way to go.

But like I said, there is a uh entire generation of people that are growing up, who would, we really believe, move to the independence that would enable them to live on their own and manage things on their own.

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So, um, there are, there are a whole lot of them that have started and all different models.

Somewhere the parents also live with them.

Somewhere it's more professionally run and stuff like that.

So, there is one Ananda that is run by Action for Autism.

There is Arunima that is run in Dehradun.

There is A.L.A.P which is another one that is run in Delhi.

There is a whole lot in and around Delhi.

Radhika Foundation, A.L.A.P.

Then there, there are, there is something called CLAPS, coming up in Chennai.

Uh, and I cannot recall all the names but there are a whole lot of them.

There are there in Mumbai.

There is uh God's Own, there was one.

There are…There is a whole bunch that forum for autism is setting up.

Uh there is a…an assisted living forum for autism is setting up in Pune.

Um, so there are many of them coming up in different…

There is something coming up in Jalandhar, right?

So there are many assisted living and most of them are being driven by parents themselves.