Neena Wagh: Empowering Autism in India with ALAP

Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide?
Hosted by Tony Mantor, broadcasting from the heart of Music City, USA, Nashville, Tennessee.
Join us as our guests share their raw, powerful stories.
Some will spark laughter, others will move you to tears.
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you're never alone. We're igniting a global movement to empower
everyone to make a lasting difference by fostering deep awareness,
unwavering acceptance, and profound understanding of autism and mental health.
Tune in, be inspired, and join us in transforming the
world one story at a time. Hi, I'm Tony Mantur.
Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide.
Joining us today is Nina Wogg, the visionary founder of
Allah Assisted Living for Autistic Persons, an organization dedicated to
empowering autistic individuals through awareness and support. Known for her
inspiring work, including her impactful session on autism awareness from
Knowing to Accepting, Nina is transforming lives with her advocacy
and expertise. She joins us today to share her journey, insights,
and the mission driving allah forward. So before we dive
into our episode, we'll be back with an uninterrupted show
right after a word from our sponsors. Thanks for coming on.
It's my pleasure. Thank you for doing this.
It's my pleasure if you could give us a little
background on what you do. Yeah.
I am a parent of our special lead young adult
on the autism spictrum.
His name is He's a handsome, wilful boy young man.
And earlier I was working in print facility management and
around twenty two years back.
He was diagnosed with autism.
That's my life on a different track altogether because then
decided that I should leave the job and be a
complete hands on mother because at that time there was
hardly much information about autism.
In a way retrospect, I think I was somehow getting.
Prepared because I knew about autism because I had read
an article where before even I got married about autism.
Then I think a couple of.
Movies, you know, of course The rain Man, then Mercury
Rising and all that, I had a faint idea as to,
you know, what is a miss So that was actually
that helped us to get an early diagnosis. By the
time he was three, we started thinking that maybe he
has a case of selective hearing because he would not
respond to his name, but to certain programs which used
to come he would come running hearing the you know,
those signature tune.
So that's how I charted. Then then I.
Got involved with autism advocacy because I started looking.
For parents in a similar boat.
This was that time when the social networking, the social
all these platforms were not there. Only email was, you
know there, And so where i'm og used to go
for his early invention, I started meeting other parents, listening
to their childs and turbulences and all.
So a long way back, I formed a parent group.
An association is a Hindi word. It means impact. So
one thing led to another.
From the past twenty years I've been involved with autism
advocacy so.
To say, so, how old is he now?
He's twenty five years old.
Okay, twenty five, and how is he doing?
When he was diagnosed, I was told that he was
non verbal, you know, by in life. And when he
turned six, there was some neurologist was visiting the my
pedagesian from us actually, and he did his assessment. He
says that okay, he's good in problem solving. He has
that problem solving aptitude. But whatever speech he will develop
till the age of sixty.
Seven, that will remain like that, and that he will
require assistance throughout life.
But then now he can speak a smuggling of sentences.
He can express his needs, if not his views. Both
mama and the son have developed to understand each other's
while view as well.
So when you first learned he was autistic, how did
that affect you? And then how did it affect your family?
Surprisingly, I remember, I still remember that phone call I'd
made to my brother.
I said that this is what has happened, and.
My doctor has given this diagnosis that he has autism.
Said so what? So that gave me a you know,
a great strength.
Actually, frankly speaking, it did not really dawn on us
in one go as to you know, what really lies
ahead of us, But at.
Least in a sense it was a relief.
We were able to label his condition because I used
to think till the time that maybe I'm a bad mom.
He will not come to me because you know, resume
my work. Earlier he was just three months old and
he used to an anyear We have this joint family system.
My mother in law used to take care.
Of him, so I thought, maybe he's got more attached
to my mother in law and that, you know, maybe
I'm not giving him attentions or that guilt was there.
But then the diagnosis actually.
Gave her sort of a in a twisted way, respite
to me that at least.
I was not in the wrong somewhere.
Then that gave me the strength to get into the
mode of okay, now what can I do?
So you know, that followed with a lot of activities
and actions.
I think the first ten years post and diagnosis when
in the diagnosis, this trip is that therapist because everybody
said that early intervention really makes an impact.
So like I was like totally obsessed. I had left
my job.
I was completely hands on forty mom, you know, totally
engross into the action mode.
Now after a while, you started a charity of your own,
is that correct?
So once I started getting involved with the autism advocacy,
one thing led to another.
By the time my son hit Adolesson.
Most of the time, when an autistic person hits at dolescence,
there's a lot of aggression or assertiveness comes and because
of that they are probably they understand that they are
lacking in the social expectation, so ession also comes. So
that was a very harrowing time for me, and I
started thinking that I am his primary care IBA because
my husband had to learn because I had stopped working
and taking care of my so is my under child
that by the time I had a younger sons as well. Yeah,
so I started thinking that what will happen if.
I dropped dead? So what after us? Yeah? So that
ut me on a different trajectory.
So I started looking around asking people what are the plans,
what are the facilities? But most of the parents were
crueless at that time. Whatever the facilities were there across
the country, they were you know, the very the old
government run institution with a lot of horror stories going on.
First I started was by the time Facebook had come,
So I created a community forum on the Facebook called
Forum for Assistant Living Solutions, and I started collating information
on this subject. I became obsessed with finding more information,
so that became like a information watering hore for other
parents who were in the similar From that, I came
to setting up my own angino called allah Allah. As
I said bills, it means a musical note, but it
also me assisted living for artistic persons.
So I opened up a group home for such young adults.
Premise was that they should have the similar lifestyle and
opportunities as we have.
That's great that it work that way. So what happened
next on your journey?
Our friend he gave his house rent free for a year,
God bless him. So we did meet good dangers along
with on the journey. And so we ran like a
pilot project, I would say, and I would take care
of the daily needs and the running and everything. I
would hire the staff, train them, and find a nearby
other facilities where these young adults will go and do
the learning, whether it's multimedia or whether getting an occupational
therapy or this therapy, whatever was the requirement for each
individual resident.
So then a lot of failures.
Happened, a lot of learnings happened, and in twenty eighteen,
I set up ALLAH.
By the time I had since.
I was already i would say, an established advocacy person,
so actually starting my own enjoy at that time became easy.
And I got a very welcoming response that like people
said that this is something we were waiting for because
I was resisting opening my own enjoy. I wanted to
help others and you know, somehow compliment them in whichever
way I could because they were taking care of my child.
But then one thing like another, I thought that what.
I'm expecting from others and I'm not kidding, I might
as well do it on my own.
So I started with a small apartment and my.
Husband is another angel who has always stood by me
in whatever decisions I've taken. And they were quite radical
because the day when I decided that okay, I'm becoming
obsessed with autism and a moved. My son is becoming
too dependent on me as a primary care giver, and
then he's really not getting that independent. So I started
took the decision that he will go in a hostel.
So for three years he was away from us, but
then again I brought back.
Then we started this initiative with the four parents I
didn't work out. Then I started disallowed and we started
in a three bedroom apartment and there were four kids.
Then the movid happen, so three parents just left. I
was again back to ground zero. I've been to ground
zero a lot times. I think zero isn't in front
of it well, but it's got a lot of potential
to go back from there to any direction. So we
have a big house now, we bought a land, we
built a house. Now we have eight young adults and
two day day scholars, and.
We also have a separate vocational unit.
So each step along the way you said you went
back to ground zero, I believe that probably gave you
an opportunity to learn. Oh yeah, now that you have
it up and running and it's working the way that
you want it to, what are some of the things
that you learned that you was able to use moving forward.
I think I learned and I'm a big champion of
that community building because you cannot work in silo. But
there's a dichotomy here. You have to build a team,
but you have to be the captain because if you
have the conviction and you want to translate what you want,
you have to come from the position of strength and
not from the weakness.
Because if you're.
Vulnerable, if you're in if you're not clear as to
what you want, people will lead you alive.
That was one thing.
Conviction is very much required in whatever you want to visualize.
For anything.
Here, I was talking about a child who will not be.
Able to defend himself.
Who would not be a good self advocate for himself
simply because he does not have the agency of communication.
Like you and me.
So I had to be his voice and so yeah,
so conviction and consistency and come what may. I was
questioned many times, even by the family members, why don't
you take it easy?
Why don't you just.
Because you had one bad experience, you can put him
in some other place, in some other cities.
So I was help, No, I am going to create
this thing.
While I do not want to be a helicopter mom,
but at the same time, I wanted to be nearby him.
So I was very clear on those lines, and.
I continued, you know, consistently.
So I learned one thing that master has. The only
difference between.
A master and disciple is a master has more failures. Yeah,
so I've embraced that. I think.
Second thing which I really learned is that if you
want one from the world, you should be willing to
give four to the world.
That is being my thumb.
That learning has to really really from this of your
beautiful platform.
If there's other people that will because if we are.
Living in a very very shrinking world where everybody's talking
about me myself is very tiring, and it's a very
old tattern script. We need to rewrite the script of
the human life. So community living, community building is the
only way forward.
Yes, absolutely, So when you started doing that, what was
the reception? How did the community react to everything that
he was doing? Was it good?
It's beautiful?
So, you know, Tony, when we were in this rented
apartment and we had bought the plot, me and my
husband and we started building it.
We kept it a secret. We did not tell anyone.
And when the house was built, the same parents I
called it. I said, come on, I want to show
you some and then I took them there. One of
the mothers started crying and she says, you know, Nina,
today I'm going to sleep peacefully.
And that was, you know, like the best thing I.
Ever heard in my life. All of those parents came forward,
what do we want?
How can we help?
They wanted to contribute in the whatever the money was
spent in the building.
I said, no, by God's brace, we have been able
to do it. You can help in whichever waste.
Somebody gifted a washing machine, somebody bought curtains, somebody got
a fridge. Somebody got something. I always wanted to have
a joint family, and.
I think I have the joint family.
Now there are ten families. You go together, we go
for shopping, we go for lunches. Just after tomorrow there
is a festival, so we're going to celebrate that.
You go out for trips.
So, like I said, when you start with conviction and
from position of strength and keep going, people will come
and will align with you and your energy, and you
know then you'll expand.
So yeah, I'm there right now.
That's great. Now that you've got it running, what's your
hopes for the future, what's your next steps moving forward?
I'm trying to sort of drill the whole ecosystem into
the DNA of each and everybody involved here so that
when I am not there, it's not fade away.
You know, it has to go. It has to percolate
right down to the deepest routes.
You know, I have visualized and I'm very positive that
you know, I will always have more people because when
you think of as a collective compared to just for yourself,
people are very smart, people are very intuitive. They value
that in spite of all the shenanigans that is happening
in the world. I still feel the world is running
only because of the good people, people with good intent.
And I think you will have them.
I have trained two young adults and they're now with
me from the past ten years now and I'm owning
them as one or two of parents have also undertaking
active roles, different responsibility. So you can say I've created
a core. Then I've created an outer circle that is done.
Now I'm creating a larger circle, which is of increasing
the stakeholder base, like the community, like people from corporates,
the neighborhood, you know, people who have nothing to do
with autism, but they have good art and they want
to contribute in some way.
People from all walks of life.
Yeah, that's fantastic. The people that you have working there
now along with the autistic people that you're helping. How
much of a change have you seen over the years
You look back see what it was, and now you
can say, wow, we are really accomplishing something here.
That's such a good question.
So my first first criteria was that I did not
want a huge institutional kind of setup, simply because I.
Did not want my son to get lost in the number.
I wanted to groom nuture every individual according to their needs,
their desires, their quirkiness, their weirdness, whatever. And because we
are working with just tend adults, we are able to
nurture them individually by seeing their own individual strengths. So
one chap who came, he would not sit even for
a second.
He will keep running around like a rabbit. He would
not hold up. And today he's painting, today he's sitting.
He has reached a level of pre vocation where he's
doing these sort things and matching and that they're like
the pre skills for going to a vocational lady. So
out of each ten four young adults have reached upoint,
including my son, that if they don't go to the
vocational and we say sometime today it's closed, they will
say no, not to no holiday office office. So within that,
you know, so they express this thing and then they
will make sure the caregiver is not wearing those uh
you know, tracks or something, that they will take them
to the almiran. They will make them way formal close
because that is their indication. Dud, you're not sitting at home,
you're getting ready and.
You're going for work.
My son another they have the same way because of
this ABA or all these therapies make them comply to
do one work.
We have to reward them.
With little sweet or some snack or some sweet peet ice.
Through that system out I brought them to the point
that you have to work because that's how the life goes.
It's not only transactional. It is good for your own
self esteem.
And they've understood that. We're very proud of that.
That's great. It's always really good to feel good about yourself.
Now do you see more inquiries coming in? Is it you?
What's that looking at?
Every day? Every day? Every day? In fact, I am very.
Open to parents who meet I sent my home for
these kids is not scalable because again I don't want
to compromise on the quality. But these are very easily replicable.
So I'm telling them reaching out to them that we
can have a community outreach where you don't have to
send you a child anywhere, but because you're living within
fifteen twenty kilometers radius, if you have a family, we
can give you an outreach program where our caregivers can
go to your house as and when you need it.
A s Fie Let's say your child needs to go
to a doctor, he wants to go for a movie,
he can come with us. Parents have not open up
to that idea, but I think eventually they will because
this group the TAP started is one of its kind
in India. People are still very much comfortable into having
a big number of people.
All coming together.
All kinds of setups are coming. But I'm very convinced
about my own model because after seeing my model dead,
two more organizations who have come up with similar models
within in the nearby cities.
So I think I see a future of group homes.
Of a smaller scale but like a boutique property kind
of a thing replicating in all part of the country.
So now my endeavor is to help all those parents
who would like to replicate this model.
Other than that.
So next step was I started from seven years start
going to all these people who are running such facilities
to come together under one umbrella at former consortium so
that we could set up minimum standard of living to
establish good practices.
So we have along with.
Some similar people with a similar vision who agreed to
this and are willing to work in that, have come together.
We have set up a new organization called Alpha. It's
Assisted Living Facility Owners Consortium. We have started doing peer
audits based on these minimum standard living parameters that we
have made in our house. Physical environment should be, what
should be securities? What should be you know, medical facilities,
what should be a disaster management policies? What should be uh,
you know, all sorts of things that you need when
you enter a such facility. That is the next level
that we are now working on.
That's great. So do you have a website where people
can check out what you're doing?
Okay, it's at www dot allah, dot net, dot in.
That is my website.
That can also take you to that community forum which
anybody can go on the Facebook. It's called Forum for
Assistant Giving Solutions. In the past five years I've collated.
When I started collating that information, they were only.
Twenty five to thirty five organization. Today it's increased to
seventy five to eighty. The number is increasing. Yeah, say Indian.
Parents sitting in New Zealand and he wants to look
for a facility in down West, in the western.
State in our country.
He can go to that forum, access that list and
there's no change.
It's free and can get the information.
Yeah, that's great because the more information people have, the
more the community thrives.
Absolutely, and I keep doing interviews.
I started going to Like I said, I'm obsessed with
this topic.
I started going and.
Personally visiting such facilities and then reporting back to the parents' groups.
They have more than three thousand parents and the.
Numbers increasing, and started interviewing them online. This happened, This
sped up during the COVID time. I did a lot
of these online talks. So many parents came to know
about this thing. Especially a post COVID parents have realized
that they are not immortal, that they have to, you know,
start thinking like yesterday already. Because you see, India is
a very largely populated country with diversity and cultural sensibilities
as well as diversity and challenges, and diversity in economic
status as well. So government can only reach out to
the lowest of the marginalized segment us.
People from middle classes.
And even in India, the middle classes have also got
four layers.
They are left to fend for themselves.
So all the community, the facilities which are coming up
are parent driven. Government is not funding even one single child.
So I started realizing that the building and reso. Sharing
is the way forward. You cannot keep sitting the land
of our life that somebody will do something for my child.
No, that's that's where we are.
Yes, I agree, that's very true. Now, what would you
like to tell the listeners that you think is very
important that they hear and understand about what it is
that you were doing and trying to do.
A couple of things, whatever we are doing, especially even
in I went to US, I went to dubaif I
met people from UK as well. A, because mostly women
are the autism advocates. Because A it's a social construct
everywhere that the man goes to earn the money and
women take that choice because they are the natural and everything.
But they become very obsessed with their child.
And after a point, the child takes us back seat
and the mother you know, comes in the front. We
have to keep balancing, we have to keep refocusing and
bring the child in the front. He is the main hero,
not us. We are the sidekicks. So that equation should
remain like that because ultimately his agency, we are his agency.
We cannot replace a child.
We have to.
Breathe and think on his behalf, even if he cannot
communicate we have to keep him in front, keep going
back in their shoes to think how they will perceive
the whole thing.
That is one thing. Second thing is, let's.
Say, in any other country where the government is providing
facilities and all caregiving is diluted, is diluting very fast.
We want to outso tarenting. Also, we have come to
that point because emotional resilience has really come down.
We don't have patience even for regular neurotypical kids, and
we will on the.
Special need children.
India still are lucky in a sense that we have caregivers.
We have average Indian household, we have a maid, we
have a driver.
Those who can afford and they have a housemaid as well,
whereas in compared to our American family, you have to
do everything on your own. So in that sense, sometimes
the child becomes more independent than his counterpout here in India.
But on the flip side, because you're dependent totally on
the government.
Facilities and all the caregivers.
The quality is really not that good.
But here because of our community living, we somehow have
a little more support. Having said that, what can come
across the board is we cannot just rely on our
own thing. Or just the government. People have to come together.
We have to see that we are in the same board.
We have the common pain of our children not getting
heard properly. In most part of the.
World, they are not even the boad banks in the
power they count them.
The more communities come together, the more they start relying
on themselves and God knows to sharing whatever.
Even if you are the poorest of the poor in
a living in a village, in a small portage.
You know, even if that can be shared with two
more kids, that will really go a long way.
So that is why I'm saying community sharing.
Listening to your child his story remain the main stay,
and we skeep supporting him being his voice.
Engage and increase your stakeholder base. It was most of
the time wherever we meet, whether it's international conferences, whether.
It's advocacy, we are just you know, meeting the similar
people and we are just crutching each other's back. But
we're not getting good ideas, We're not getting new ideas.
So if we want the larger world to become sensitized,
we have to increase our stakeholder base, engage with as
many people fully, I think will that population process will
be complete because once the society through the roots come
to know that there is inclusivity in the diversity, then.
It becomes a main say I think, then we are alsort.
What are some of the differences you've seen between India
and different spots around the world.
I have not personally been, but I have studied because
of the various models I had been thinking reading about
the first time account from other people, because like let's say,
in UK, mostly their state run organization, and they're very
set rules that only from this area, only nearby area
that people can come caregiving. It's still very institutionalized. So
I've heard and I've been interacting. In fact Ozma's she
was with you with Lena, I think on on your
podcast Whose Man.
I've been talking a lot.
She loved my model and she once said that I
would love to send my son to your place.
I said, why don't you. I can help you in
creating this kind of a community there.
The expenses are I think it's become very expensive there,
although the land is expensive here, but still we still
are way.
Better in terms of economics in that.
But primarily caregiving is because I have recently heard two
very horrors to although that happens everywhere. We're getting people
from different countries. The third world country is whatever, there's
not enough. Impetus is given on training and sensitization to
the caregivers that needs to be really taken care of.
Yes, well, this has been great, great conversation, great information.
I really appreciate you taking the time to join us today, Mike.
I always I'm happy to reach out to you know,
through as many avenues.
Yes, me too, and I've really enjoyed it. Thanks again,
thanks for taking time out of your busy schedule to
listen to our show today. We hope you enjoyed it
as much as we enjoyed bringing it to you. If
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