← Tony Mantor: Why Not Me ?
Tony Mantor: Why Not Me ?
Neena Wagh: Empowering Autism in India with ALAP
00:28:14
In this episode, Neena Wagh shares her deeply personal journey raising her autistic son. She highlights the challenges navigating limited resources and societal perceptions. She discusses her non profit ALAP with early interventions strategies and fostering inclusion for autistic individuals.
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- [00:00]
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Tony Mantour
Welcome to why Not Me?
- [01:39]
Why Not Me? Host/Announcer
Embracing Autism and Mental Health Worldwide hosted.
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Tony Mantour
By Tony Mantour broadcasting from the heart.
- [01:47]
Why Not Me? Host/Announcer
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. These real life journeys inspire, connect and remind you that 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.
- [02:33]
Tony Mantour
Hi, I'm Tony Mantour. Welcome to why Not Embracing Autism and Mental Health Worldwide. Joining us today is Nina Waugh, the visionary founder of Allop 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 ALLA forward. So before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors.
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- [05:19]
Tony Mantour
Thanks for coming on.
- [05:20]
Nina Waugh
It's my pleasure. Thank you for doing this.
- [05:22]
Tony Mantour
It's my pleasure. If you could give us a little background on what you do.
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Nina Waugh
I am a parent of a special need young adult on the autism spectrum. His name is Amog. He's a handsome, beautiful boy young man and earlier I was working in corporate facility management and around 22 years back he was diagnosed with autism. That's set 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, in retrospect, I think I was somehow getting prepared because I knew about autism because I had read in article way before even I got married about autism. Then I had seen 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 amiss. 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 certain programs which used to come, he would come running hearing those, you know, those signature tune. So that's how I started. And then I got involved with autism advocacy because I started looking for parents in the 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 AMOG used to go for his early intervention, I started meeting other parents, listening to their trials and turbulences and all. So long time back I formed a parent group, an association called asar. ASAR is a Hindi word, it means impact. So one thing led to another. From the past 20 years I've been involved with autism advocacy, so to say.
- [07:18]
Tony Mantour
So how old is he now?
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Nina Waugh
He's 25 years old.
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Tony Mantour
Okay, 25. And how is he doing?
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Nina Waugh
When he was diagnosed, he. I was told that he was non verbal, you know, by and large. And when he turned 6, there was some neurologist where was visiting the. My pediatrician 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 6, 7, that will remain like that and that he will require assistance throughout life. But then now he can speak. Speak A smattering of sentences. He can express his needs, if not his views. Both mama and the son have developed to understand each other's worldview as well.
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Tony Mantour
So when you first learned he was autistic, how did that affect you? And then how did it affect your family?
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Nina Waugh
Surprisingly, I remember, I still remember that phone call I made to my brother. I said that this is what has happened and my doctor has given this diagnosis that he has autism. My brother said, so what? So that gave me, 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 in India 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 no, maybe I'm not giving him attention. So that guilt was there. But then the diagnosis actually gave a sort of a. In a twisted way a 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 lot of activities and actions. I think the first 10 years post the diagnosis went in the diagnosis this therapist, that therapist because everybody said that early intervention really makes an impact. So like I was like totally obsessed. I left my job. I was completely hands on potty mom, you know, totally engross into the action mode.
- [09:50]
Tony Mantour
Now after a while you started a charity of your own, is that correct?
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Nina Waugh
So once I started getting involved with the autism advocacy, one thing led to another by the time my son hit adolescent. Most of the time when an autistic person hits adolescence, 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 aggression also comes. So that was a very harrowing time for me. And I started thinking that I miss primary care giver because my husband had to earn because I had stopped working and taking care of my so amo is my elder child that by the time I had younger son as well. Yeah. So I started thinking that what will happen if I drop dead? So what? After us? Yeah. So that put 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 clueless 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 Assisted Living Solutions. And I started collating information on this subject. I became obsessed with finding more information. So that became like a information watering hole for other parents who were in the similar. From that I came to setting up my own NGO called ALA ALA as I said, bills, it means a musical note. But it also means assisted living for autistic 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.
- [11:42]
Tony Mantour
That's great that it worked that way. So what happened next on your journey?
- [11:47]
Nina Waugh
He gave his house rent free for a year, God bless him. So we did meet good angels 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 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 residential. So then lot of failures happen, lot of learnings happen. And in 2018 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 NGO 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 ngo. 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 led to another. I thought that what I am expecting from others and I'm not getting, 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 I'm more, my son is becoming too dependent on me as a primary caregiver 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 that didn't work out. Then I started this alarm. We started in a three bedroom apartment and there were four kids. Then the COVID happened. So three parents just left. I was again back two. Ground zero. I've been to ground zero a lot. So I think zero is an infernal number. But it's got a lot of potential to go back from there to in 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 scholars and we also have a separate vocational unit.
- [14:10]
Tony Mantour
So each step along the way, you said you went back to ground zero. I believe that probably gave you an opportunity to learn.
- [14:18]
Nina Waugh
Oh yeah.
- [14:19]
Tony Mantour
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?
- [14:28]
Nina Waugh
I think a. 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. If you're not clear as to what you want, people will eat you alive. That is one thing. Conviction is very much required in whatever you want to visualize for anything here. I was talking about a child who will. Who will not be able to defend himself or 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 city. So I was hell bent. 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 has been my thumbnail. That learning has to really, really, from this of your beautiful platform, if this other people that will. Because if we are living in a very, very shrinking world where everybody is talking about me, myself, it's very tiring. And it's a very old tattooed script. We need to rewrite the script of the human life. So community living, community building is the only way forward.
- [16:25]
Tony Mantour
Yes, absolutely. So when you started doing that, what was the reception? How did the community react to everything that you was doing? Was it good?
- [16:35]
Nina Waugh
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 her, I Said, come on, I want to show you some. And when 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 grace, we have been able to do it. You can help in whichever way. Somebody gifted a washing machine some. 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 10 families. We go together, we go for shopping, we go for lunches. Just day after tomorrow there is a festival. So we're going to celebrate that. We 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 it will expand. So, yeah, I'm there right now.
- [17:51]
Tony Mantour
That's great. Now that you've got it running, what's your hopes for the future? What's your next steps moving forward?
- [17:59]
Nina Waugh
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 should not fade away. You know, it has to go. It has to percolate right down to the deepest roots. You know, I have visualized and. 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 going, 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 past 10 years now. And I'm grooming them as one or two parents have also started taking active roles, different responsibility. So you can say I created a core then I've created an outdoor 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 heart and they want to contribute in some way. People from all walks of life.
- [19:16]
Tony Mantour
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?
- [19:27]
Why Not Me? Host/Announcer
You look back, see what it was.
- [19:29]
Tony Mantour
And now you can say wow, we are really accomplishing something here.
- [19:34]
Nina Waugh
Oh, that's such a good question. So my first, first criteria was that I did not want huge institutional kind of setup simply because I did not want my son to get lost in the number. I wanted to groom, nurture every individual according to their needs, their desires, their quirkiness, their weirdness, whatever. And because we are working with just 10 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 fainting, today he's sitting, he has reached a level of pre vocation where he's doing these sortings and matching. And also that there's like the pre skills for going to a vocational lady. So out of these 10, four young adults have reached a point, including my son, that if they don't go to the vocational and we say sometime today it's closed, they will say no, no chuti, 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, you know, tracks or something that they will take them to the almira and they will make them wear formal clothes because that is their indication. Dude, we are not sitting at home, we are getting ready and we are going for work. My son and other 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 pea. I threw 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. I'm very proud of that.
- [21:24]
Tony Mantour
That's great. It's always really good to feel good about yourself. Now do you see more inquiries coming in? Is it expanding for you? What's that looking like every day?
- [21:34]
Nina Waugh
Every day, Every day. In fact I am very open to parents whoever meet. I said 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. So I am telling them, reaching out to them, that we can have a community outreach where you don't have to send your child anywhere but because you live in within 15, 20 km 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 a respite. Let's say your child needs to go to a doctor, he wants to go for a movie, he can come with us. I parents have not opened up to that idea, but I think eventually they will because this group home that I have 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 kind of setups are coming. But I'm very convinced about my own model because after seeing my model, there are 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 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 going to all these people who are running such facilities to come together under one umbrella and form a 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 alfoc. 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 disaster management policies, what should be all sort of things that you need when you enter a such facility. That is the next level that we are now working on.
- [23:47]
Tony Mantour
That's great. So do you have a website where people can check out what you're doing?
- [23:52]
Nina Waugh
Okay, it's www.ala.net.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 Assisted Living Solutions. In the past five years I've collated when I started collating that information, there were only 25 to 35 organization. Today it's increased to 75 to 80. The number is increasing. Yeah, 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 charge, it's all fee and can get the information.
- [24:34]
Tony Mantour
Yeah, that's great. Because the more Information people have, the more the community thrives.
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Nina Waugh
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 parent groups there. More than 3,000 parents and the numbers keep 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 like about this thing. Especially post covet 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 in cultural sensibilities as well as diversity in challenges and diversity in the economic status as well. So government can only reach out to the lowest of the the marginalized segment. U.S. people from Middle classes. You know, 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 resource sharing is the way forward. You cannot keep sitting till the end of our life that somebody will do something for my child. No, that's. That's where we are.
- [25:59]
Tony Mantour
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 are doing and trying to do A couple of things.
- [26:12]
Nina Waugh
Whatever we are doing, especially even in I went to us I went to Dubai, 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 the choice because they are the nurturers and everything. But they become very obsessed with their child. And after a point the child takes a 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 are not cannot replace our 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 would 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 outsource parenting 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 leave alone the special need. Children here in 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 who can afford and they have a housemaid as well. Whereas in compared to American family you have to do everything on your own. So in that sense sometimes the child becomes more independent than his counterpart here in India. But on the flip side, because you're depending 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 vote banks people in the power they discount them. The more communities come together the more they start relying on themselves and God knows, so sharing whatever. Even if you are the poorest of the poor in a living in a village in a small cottage, you know, even if that can be shared with two more kids, that will really go a long way. So that is what I'm saying. Community, sharing, listening to your child, his story remain the mainstay and we keep supporting him being his voice. Engage and increase your stakeholder base. Because 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 scratching each other's back. But we're not getting good ideas, we're not getting new ideas. So if you want the larger world to become sensitized, we have to increase our stakeholder base, engage with as many people fully. I think we 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 may say I think then we are all sorted.
- [29:33]
Tony Mantour
What are some of the differences you've seen between India and different spots around the world?
- [29:39]
Nina Waugh
I have not personally been but I have studied because of the various models I had been think reading about the first hand account from other people because like let's say in UK mostly they are state run organization and they are very set rules that only from this area, only nearby area the people can come caregiving is still very institutionalized, so I've heard and I've been interacting. In fact, Uzma was she was with you, with Lynn, I think, on on your podcast. Uzma and 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. A 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 sense. But primarily caregiving is because I have recently heard two very horror stories, although that happens everywhere. They're getting people from different countries, the third world countries, whatever. There's not enough impetus is given on good training and sensitization to the caregivers. That needs to be really taken care of.
- [30:46]
Tony Mantour
Yes. Well, this has been great, great conversation, great information. I really appreciate you taking the time to join us today.
- [30:53]
Nina Waugh
No, my pleasure. I always, I'm happy to reach out to, you know, through as many avenues.
- [31:00]
Tony Mantour
Yes, me too. And I've really enjoyed it. Thanks again.
- [31:10]
Why Not Me? Host/Announcer
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 you know someone who has a story to share, tell them to contact us at WhyNotMe World. One last thing, spread the word about why not me. Our conversations, our inspiring guests that show you are not alone in this world.
- [31:46]
Dale (Framing Contractor)
If you like the show, please take a moment to rate review and subscribe. It really does help the show to grow. Thank you for listening.