Tony Mantor: Why Not Me ? - Neena Wagh: Empowering Autism in India with ALAP

Episode Date: November 26, 2025

Embracing Autism and Mental Health: Neena Wagh's Journey in Creating Assisted Living for Autistic Persons In this episode of 'Why Not Me,' host Tony Mantor speaks with Nina Wahg, founder of ALAP, Assisted Living for Autistic Persons. Neena shares her personal journey of raising her autistic son Amou and discusses her transition from a career in facility management to becoming a full-time autism advocate. She opens up about the challenges and triumphs in establishing a group home for autistic adults, the importance of community building, and her vision for the future of assisted living in India. Neena highlights the global need for increased awareness, acceptance, and understanding of autism and mental health, encouraging listeners to join her mission of transforming the world, one story at a time. Meet Neena Wagh: Founder of AAP Assisted Living Neena's Personal Journey with Autism Challenges and Triumphs in Autism Advocacy Establishing A Vision for Assisted Living Building a Community and Overcoming Obstacles Future Plans and Expanding the Mission Global Perspectives and Final Thoughts Music: T. Wild Publishing: Mantor Music The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me, embracing autism and mental health worldwide, hosted by Tony Miatour. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guests share their raw, howful stories. Some will spark laughter, others will move you to tears. These real-life journeys inspire, connect, and remind you that your 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 Mantor. Welcome to Why Not Me, embracing autism and mental health worldwide. Joining us today is Nina Wogg, the visionary founder of Alap, 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 a la 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. 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 a 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 an article way before even I got married about autism. Then I had a couple of movies. 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 free, 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 signature dune. So that's how I started. 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 Amok 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. Aser 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. So how old is he now? He's 25 years old. Okay, 25. And how is he doing? When he was diagnosed, I was told that he was non-verbal, you know, by and large.

And when he turned six, there was some neurologist where he was visiting the, my pediatry, 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 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. 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 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 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, resumed 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, you know, maybe I'm not giving him attention.

So that guilt was there. But then the diagnosis actually gave a sort of in a twisted way or despite 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 action. 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, 40 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 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'm his primary care-gibaba because my husband had to earn because I had stopped working and taking care of my... So I'm always my elder child that by the time I had a younger son as well. Yeah, so I started thinking that what will happen if I dropped dead. So what after us? Yeah.

So that took 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 old government-run institutions 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 an information watering hole for other parents who were in the similar. From that, I came to setting up my own NGO called ALAP, ALAP, as I said, Bills. means a musical note, but it also means assisted living for autistic persons. So I opened up a group home for such young adults. Remise was that they should have the similar lifestyle and opportunities as we have. That's great that it worked that way. So what happened next on your journey? For a friend, he gave his house rent free for a year, for 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 resident. So then a lot of failures happen, a 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'm 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 my son is becoming too dependent on me as a primary caregiver and then he's really not getting that independent so I I started to 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 alap and 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 to ground zero. I've been to ground zero a lot. I think zero is an infrared. it, 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 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 A, I learn, and I'm a big champion of that community building because you cannot work in silo. But there's a decontomy 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 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 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 city so I was hell and 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 thumbro.

That learning has to really, really, from this of your beautiful platform, if this other people, that will be 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, to tattered 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, not tell anyone. And when the house was built, the same parents I called there, 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 brace, we have been able to do it. You can help in whichever way. 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 10 families, we go together, we go for shopping, we go for lunches. Just after tomorrow there is a festival. 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 to people, we'll come and will align. with you and your energy and you know then it will 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 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 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 have now, with me from past 10 years now and I'm booming them as one or two of parents have also started taking active roles different responsibility so you can say I've 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 uh 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. 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. Oh, that's such a good question. So my first priority 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, 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 painting. Today he is sitting, he has reached a level of pre-vocation where he's doing these sortings and matching and also there's like the pre-skills for going to a vocational ready. So out of these 10, four younger dants have reached a point including my son that if they don't go to the vocational and we say sometimes 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 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 to make them comply to do one work we have to reward them with little sweet or some snack or some sweet peat eyes threw that system out i brought them to the point that you have to work because that's how the light goes. It's not only transactional. It is good for your own self-esteem. 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

expanding for you? What's that looking like? Every day. Every day. Every day. In fact, I am very open to parents, whoever meet. I said my home for these kids is not. It's 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 your child anywhere but because you live within 15 20 kilometers radius if you have a family we can give you an outreach program where our caregivers can go to your house as in 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 said parents have not open up to that idea but I think eventually they will because this group home that I've 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 Alfok. It's assisted living facility owners consortium. We have started doing peer audits based on this minimum standard living parameters that we have made in. How our house physical environment should be, what should be securities, what should be medical facilities, what should be disaster management policies, what should be, you know, all sort of things that you need when you enter. or 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 www. www.alap.net.com. 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 Assistance Living Solutions. In the past five years, I've collated. When I started collating that information, they were only 25 to 35 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 chance, it's not free, and can get the information. Yeah, that's great, because the more information people have,

the more the community thrives. Yeah, 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. There are more than 3,000 parents and the numbers keep increasing and started interviewing them online.

This happened, this fed up during the COVID time. I did a lot of these online talks. So many parents came to know about this thing. And especially 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 in cultural sensibilities as well as diversity in 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, 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 city building and resource sharing is the way forward. You cannot keep sitting till the end of her life that somebody will do something for my child. No, 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 are doing and trying to do? A couple of things. Whatever we are doing is personally, even in I went to U.S., 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 backseat

and the mother comes in the front. We have to keep balancing, we have to keep refocusing and bring the child in the friend. 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, we 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.

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 out-souled 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 can afford and they have a housemaid as well. Whereas compared to an 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 dependent totally on the government facilities and all, the caregivers, the quality is really not that good. But here, because of our community living, he 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. 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 world, poor in a living in a village in a small potage, 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. Hopefully, 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 major change. I think then we are all sorted. What are some of the differences? as 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 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.

It's still very institutionalized. So I've heard and I've been interacting. In fact, Rosemaz, she was with you with Lynn, I think on Europe. podcast. Usma 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 training and sensitization to the caregivers.

That needs to be, you know, 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. No, my pleasure. 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 you know someone who has a story to share, tell them to contact us at why not me.world.

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