Podcast Summary

Podcast: Tony Mantor: Why Not Me?
Episode: Neena Wagh: Empowering Autism in India with ALAP
Host: Tony Mantor
Guest: Neena Wagh, Founder – ALAP (Assisted Living for Autistic Persons)
Date: November 26, 2025

Overview

This episode features Neena Wagh, a pioneering advocate for autism in India, as she shares her personal journey as the mother of a young adult with autism and her mission-driven work founding ALAP and other community initiatives. Neena offers insights into the unique challenges Indian families face, the empowerment possible through collective action, and her vision for sustainable, compassionate assisted living for autistic adults.

Key Discussion Points and Insights

1. Neena’s Personal Journey and Early Challenges

• Diagnosis and Early Years

  • Neena’s son, Amogh, was diagnosed with autism over 20 years ago, which radically altered her career and life trajectory.
  • She became a full-time caretaker and threw herself into finding information and support for her son at a time when both were rare in India.
  • Quote:
    “I had a faint idea as to, you know, what is amiss. So that was actually that helped us to get an early diagnosis...I started meeting other parents, listening to their trials and turbulences...” (05:25–07:18)

• Coping with Diagnosis

  • She described how having a label for her son’s behaviors brought a surprising sense of relief and focus, ending self-doubt and prompting action.
  • Quote:
    “…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?” (08:17–09:49)

2. Founding Advocacy Groups and Community Building

• Early Advocacy

  • Formed her first parent group 'ASAR' ("impact" in Hindi) to share experiences and information.
  • Recognized the acute gap in resources and began building communities both offline and (eventually) online.

• Why ALAP?

  • The existential question “who will take care of my son after me?” inspired her next phase: creating safe, nurturing, small-scale residential options for autistic adults.
  • Initiated an information-sharing Facebook group, leading to the later establishment of her own NGO and group home.
  • Quote:
    “I started with a small apartment ... the premise was that they should have the similar lifestyle and opportunities as we have.” (09:54–11:41)

3. Overcoming Setbacks and Learning From Failure

• Repeated ‘Ground Zero’ Moments

  • The journey involved pilot projects, failed collaborations, and the impact of COVID-19, which forced her to return to square one multiple times.
  • Each challenge reinforced key lessons in conviction, consistency, and community building.
  • Quote:
    “Zero is an infernal number. But it’s got a lot of potential to go back from there to in any direction.” (13:47–14:09)
    “Master has more failures. I’ve embraced that.” (14:27–16:25)

• Building Community as a Core Principle

  • Emphasized creating not just a facility, but a real joint-family spirit among parents and staff.
  • Memorable moment:
    A mother touring the newly built house in tears, saying, “Today I'm going to sleep peacefully.” (16:35–17:51)

4. The ALAP Model and Its Impact

• Personalized, Non-Institutional Care

  • Intentionally keeps ALAP small and home-like to ensure individualized attention and avoid institutionalization.
  • Focuses on tailoring care and vocational opportunities to each person’s distinctive strengths and quirks.
  • Quote:
    “I wanted to groom, nurture every individual according to their needs, their desires, their quirkiness, their weirdness, whatever.” (19:33–21:23)

• Vocational Growth and Self-Esteem

  • Residents show real progress and enthusiasm for purpose-driven work, moving beyond compliance-based therapy to cultivating self-pride in work.
  • Quote:
    “We have to reward them…with little sweet... I threw that system out ... now they have understood it’s good for your own self esteem and they've understood that.” (19:33–21:23)

5. Vision for the Future and Sectoral Change

• Sustainability and Replicability

  • Wants the ALAP ecosystem to thrive beyond her personal involvement, by instilling its values deeply among staff and families.
  • Committed to growing a broad network: “core,” “outer,” and a “larger circle” that includes local community and corporates. (17:58–19:16)

• Influence Beyond ALAP

  • ALAP’s boutique, home-based model has inspired similar projects in other Indian cities.
  • Neena is now helping to form a national consortium to promote shared standards and peer audits for such facilities (ALFOC).
  • Quote:
    “This group home that I have started is one of its kind. In India people are still…having a big number of people all coming together. All kinds of setups are coming. But I'm very convinced about my own model...” (21:33–23:47)

• Resource Sharing and Information Dissemination

  • Neena’s online resources reach thousands of families, helping them locate supportive facilities and share best practices.
  • “I started collating that information, there were only 25 to 35 organizations. Today it's increased to 75 to 80.” (23:51–24:33)

6. Lessons for Families and Broader Society

• The Balance of Advocacy

  • Warns mothers not to lose themselves in advocacy, and to remember their children are the heroes, not them.
  • Quote
    “He is the main hero, not us. We are the sidekicks. That equation should remain like that.” (26:12–29:33)

• Community Resilience and Autonomy

  • Indian families often have more support due to extended family and hired help, but must not get complacent expecting government provision. Private action and parent-driven initiatives are key.
  • Calls for greater inclusion, larger stakeholder engagement, and more action-sharing rather than “outsourcing” caregiving and advocacy.

7. International Comparison

• Institutional Models Abroad
  • Most western facilities are state-run, more institutionalized.
  • Indian middle-class parents must be more self-reliant; community-driven solutions are rising in India even as government support is limited or absent.
  • “We cannot just rely on our own thing or just the government. People have to come together.” (29:38–30:46)

Notable Quotes with Timestamps

• “I was completely hands on potty mom, you know, totally engross into the action mode.”
  — Neena Wagh, (09:49)

• “Zero is an infernal number...it's got a lot of potential to go back from there to in any direction.”
  — Neena Wagh, (14:09)

• “If you want one from the world, you should be willing to give four to the world.”
  — Neena Wagh, (14:27–16:25)

• “I always wanted to have a joint family, and I think I have the joint family now... We go together, we go for shopping, we go for lunches...”
  — Neena Wagh, (16:35–17:51)

• “I learned one thing: master has…more failures. I've embraced that.”
  — Neena Wagh, (14:27–16:25)

• “He is the main hero, not us. We are the sidekicks. That equation should remain like that.”
  — Neena Wagh, (26:12–29:33)

• “The more communities come together...even if you are the poorest of the poor...if that can be shared with two more kids, that will really go a long way.”
  — Neena Wagh, (26:12–29:33)

Key Timestamps for Important Segments

• [05:25–07:18] Neena’s background and discovery of son’s diagnosis
• [09:49–11:41] Early support group formation and charity beginnings
• [13:47–14:09] Learning from “ground zero” experiences
• [14:27–16:25] Importance of conviction, consistency, and “giving four to get one”
• [16:35–17:51] Community reaction to opening the group home
• [19:33–21:23] Individualized progress, vocational training philosophy
• [21:33–23:47] Model replication, creating ALFOC for standards and audits
• [23:51–24:33] Resource database and impact on Indian families
• [26:12–29:33] Core advice to caregivers and international comparison

Tone and Style

• Warm, compassionate, and resolute
• Neena speaks with honest vulnerability, humor (references to "potty mom"), and a deep sense of mission
• Tony offers supportive, open-ended questions and affirms Neena’s journey and insights

Further Information

• ALAP Website: www.ala.net.in
• Community Forum: “Forum for Assisted Living Solutions” on Facebook

Summary prepared for those seeking inspiration, understanding, or a practical guide in the world of autism advocacy, caregiving, and sustainable, community-based solutions in India and beyond.