Autism and Special Needs Therapy in India for Returning NRI Families
Sumathi, a mother of an autistic daughter in Bangalore, shares her 8-year journey navigating autism diagnosis, therapy options, and special education in India. She provides honest insights comparing India vs abroad for special needs children, therapy costs, and practical advice for parents.
In this story
- Key Takeaways from Sumathi's Journey
- 2026 Parent Planning Checklist for Autism Therapy in India
- 👨👩👧👦 Sumathi's Background and Family
- 🔍 Early Signs: What Parents Should Watch For
- 🏥 The Diagnosis Journey
- 🛤️ The Therapy Journey: Trial and Error
- 🏫 Types of Therapy Available in India
- 🌍 India vs Abroad: Honest Comparison
- 🎒 School Options for Special Needs Children
- 🤝 Handling Social Stigma
- 📈 Nika's Progress: 8 Years Later
- 💡 Advice for Parents
- 🏙️ Best Cities in India for Special Needs Resources
- ❓ Frequently Asked Questions
- 📚 Related Articles
Sumathi, a mother raising an autistic daughter in Bangalore, shares her 8-year journey through diagnosis, therapy options, and special education in India. She provides honest insights comparing resources in India vs abroad, therapy costs, and practical advice for parents navigating this challenging path.
Key Takeaways from Sumathi's Journey
- Daughter Nika was diagnosed with autism (ASD) at age 2.5 years; now 10 years old and showing continuous progress
- Early intervention is crucial—don't wait for elders' reassurances; trust your instincts
- India advantage: No waiting time for therapy; can take as many sessions as you can afford
- India disadvantage: most private therapy costs are paid directly; check National Trust and Niramaya eligibility separately
- Abroad advantage: Government covers costs; better transparency in therapy
- Abroad disadvantage: Long waiting times (3-6 months to 1 year); limited session flexibility
- Bangalore and Hyderabad have the most therapy options in India
- 90% of special children cannot fit into inclusive schools due to attention/sensory issues
- Acceptance is the first step—only then can you see clearly and take appropriate action
- For 2026 planning, shortlist ABA or developmental-behavioral therapy, speech therapy, occupational therapy, special education and parent training before choosing a city
Should parents of autistic children move to India or stay in the USA?
The decision is child-specific. India can be better for faster private therapy access and family support. The USA can be better when school services, insurance, IEP documentation, and therapist continuity are already working.
| Decision factor | Stay in USA if... | Consider India if... |
|---|---|---|
| Therapy access | Your child has consistent ABA/developmental therapy, speech, OT, and school coordination. | You can shortlist qualified therapists in Bangalore, Hyderabad, or another metro before moving. |
| School support | IEP, classroom accommodation, aide support, and district services are working. | You have visited schools and found a special, inclusive, or alternative setup matching the child. |
| Cost and funding | Insurance and public services cover a meaningful part of care. | You can pay private monthly therapy costs and treat schemes as support, not guaranteed funding. |
| Family support | Care burden is manageable without extended family nearby. | Grandparents or relatives can help daily without overriding the clinical plan. |
| Risk control | Changing country would break a stable child routine. | You can do a trial stay, clinic visits, school shadowing, and written therapy plan first. |
A Mother's Mission: "When I was struggling in those days, I couldn't find information about autism in Telugu or anywhere else. So I thought, why not start a channel to bring awareness to people who are struggling for information about autism or who are new to this word." — Sumathi, who started a YouTube channel to help other parents navigate the autism journey.
2026 Parent Planning Checklist for Autism Therapy in India
If you are returning to India with an autistic child, start with a qualified assessment instead of choosing a center from reviews alone. Speak with a developmental pediatrician, child neurologist, clinical psychologist or child development center, then build a plan around the child's communication, sensory, behavior, school-readiness, sleep and daily-living needs. The CDC's autism intervention guidance notes that treatment plans should match each child's needs and can include behavioral, developmental, educational and social-relational approaches.
What to shortlist before moving cities
| Need | What to ask in India | Why it matters |
|---|---|---|
| Assessment | Who evaluates the child: developmental pediatrician, clinical psychologist, child neurologist, speech therapist, OT or multidisciplinary team? | Prevents paying for random sessions before goals are clear. |
| ABA or behavioral/developmental therapy | What method is used, who supervises it, how goals are measured and how parents see progress? | Targets behavior, learning routines, communication and daily skills when appropriate. |
| Speech therapy | Does the plan cover expressive language, receptive language, AAC if needed and home carryover? | Many parents search for speech therapy because communication is the first visible gap. |
| Occupational therapy | Does OT address sensory processing, fine motor, gross motor, feeding, handwriting or self-care goals? | Useful when sensory or motor issues affect school and daily life. |
| Parent training | Will the therapist train parents with activities to repeat at home? | Therapy hours are limited; home practice decides consistency. |
| Government scheme checks | Check National Trust registration, Niramaya health insurance eligibility and Disha early intervention/day-care availability. | Private therapy pricing is separate from scheme eligibility and documentation. |
Official scheme links to verify
The National Trust covers autism, cerebral palsy, mental retardation and multiple disabilities under its mandate. Parents should separately verify scheme availability such as Niramaya and Disha, required disability documentation, registered organizations and city-level access before making financial assumptions.
👨👩👧👦 Sumathi's Background and Family
Sumathi lives in Bangalore with her husband, who works in IT, and their two children. Her elder daughter Nika is 10 years old and is on the autism spectrum (ASD - Autism Spectrum Disorder). Her younger son Sharon is 4 years old. According to the CDC's autism data, early intervention significantly improves outcomes for children on the spectrum. Many NRI families planning their return to India face similar decisions about healthcare and education for their children.
Nika was diagnosed with autism when she was about 2.5 years old—approximately 7-8 years ago. At that time, Sumathi and her husband knew nothing about autism. They had never even heard the word before.
This struggle to find information, especially in Telugu (their native language), inspired Sumathi to start her own YouTube channel. Her goal was to bring awareness to parents who are new to autism and provide the genuine information and moral support she wished she had received.
Sumathi's YouTube Channel Impact
After starting her channel, Sumathi discovered that most parents are reluctant to come forward on social media or share their stories publicly. Despite this, she has been able to provide information and moral support to many mothers who contact her through Instagram, sharing their children's stories and struggles.
Her reflection: "I really feel like I have done a very good thing starting this channel and trying to create awareness about this thing."
Note: Sumathi mentioned she's more comfortable speaking in Telugu, so some parts of the original conversation were in Telugu. This article captures the key insights from her discussion.
🔍 Early Signs: What Parents Should Watch For
Sumathi began noticing differences in Nika's behavior when she was around 1.5 to 2 years old. The comparison with her niece (her brother's daughter, who was 8 months older than Nika) made the differences more apparent.
Early Warning Signs Sumathi Observed
- Lack of imitation: Not interested in clapping hands or imitating small gestures
- Physical distance: Didn't like being cuddled; would sleep away from parents on the bed during nights
- Sleep issues: From birth, very little sleep during nights with constant crying—many nights they stayed awake the whole night
- Social disinterest: During her second birthday celebration, showed no interest in the party, playing with other kids, or mingling with family members
- Emotional detachment: Didn't care who came or went; was cranky all the time
- No name response: Would not respond to her name even when called 100 times
The Playschool Revelation
After Nika's second birthday (in April), they enrolled her in a renowned playschool in June. The school had a camera option where parents could watch their children live in the classroom.
The teachers would tell Sumathi that Nika wasn't interested and they would try to pull her into circle time "whenever she's ready."
The Name Response Test
The most telling sign was Nika's complete lack of response to her name:
A Critical Observation
"When all the other children are very excited to meet their parents, Nika is not at all showing any interest—if Papa has come, Mama has come to pick me up, nothing like that. Even if I am standing behind her and calling her name 100 times, she was not at all responding."
This was the moment they realized something serious was happening and decided to consult their pediatrician.
🏥 The Diagnosis Journey
When they consulted their pediatrician about Nika not responding to her name, the doctor asked a few simple questions:
- Does she respond if you call her?
- If she's in another room, will she come if you call her?
When the answers were "no," the pediatrician immediately mentioned it might be autism and referred them to a Child Care Development Center for assessment.
The Assessment Process
- Duration: Assessment took 2-3 days
- Report timeline: Received within about one week
- Diagnosis: Confirmed she was on the Autism Spectrum (ASD - Autism Spectrum Disorder)
- Next step: Immediately advised to join a therapy center
- Age at diagnosis: Approximately 2.5 years old
The Emotional Impact
The diagnosis hit them hard. They had never heard the word "autism" before.
Understanding Autism Types
Sumathi explained that in autism, there are two kinds of children:
Verbal vs Non-Verbal Autism
| Type | Description |
|---|---|
| Non-Verbal | Children who are completely non-verbal and don't speak |
| Verbal | Children who have words and can talk |
Nika is verbal. She had picked up vocabulary from YouTube—shapes, colors, alphabet (A to Z, small and capital letters), and could identify and sort shapes, numbers, vehicles, transport, fruits. She had the basic knowledge a 2-year-old should have, but she didn't use those words appropriately when asked.
🛤️ The Therapy Journey: Trial and Error
Sumathi's therapy journey with Nika was not straightforward. It involved multiple attempts, failures, and eventually finding what worked for their daughter.
First Attempt: Group Therapy (Failed)
They started with group therapy at the center recommended by the doctor. In this setup, 7-8 mothers with their children would be in a classroom, following a curriculum where they had to complete activities with their child during 45-minute sessions.
Why Group Therapy Didn't Work
- The environment was completely new to Sumathi—she had never seen a group of special kids before
- It was very hard for her to make Nika work on activities
- Nika was cranky all the time and never wanted to go to the therapy center
- She would pull Sumathi's hand and bag, saying "Let's go, I don't want to stay here"
- She cried through all the sessions
- The therapists would scold and shout at parents: "Why are you not able to do that with your child?"
Sumathi's frustration: "If I can do something with my child, what is the use of bringing my child to your therapy center? I can sit at home and make my child learn."
After one month of trying, neither Sumathi nor Nika could fit into that environment. They left that therapy center.
Second Attempt: Online Courses (Failed)
They tried online courses and enrolled in two or three online sessions. These also didn't work for Nika.
The Spending Trap
During this period, they fell into a common trap:
The Turning Point: Acceptance
After about one to one and a half years of struggling through depression and confusion, they finally accepted Nika's condition. This acceptance was the turning point.
The Power of Acceptance
"Once we accepted that Nika's condition is like that and we have to accept and we have to do whatever necessary things we can do for her—then we started to search for nice therapy centers which Nika can adjust to."
Finding What Worked: One-to-One Therapy
They found a special school called Bubbles School (a special school for special children) that allowed outside children for 1-2 hour therapy sessions. There, they found a special educator who made all the difference.
The Right Therapist
What made her special:
- She was a special educator AND a special mom (had a 9-year-old autistic child herself)
- She had done special education training
- She worked on her own child as well as teaching at the school
- She was assigned to Nika for one-on-one sessions
The result: "We feel like we were very lucky to meet that special educator because she worked a lot on Nika and we can see visible changes in Nika after she started working."
The Therapy Schedule That Worked
They established a routine:
- Morning: Half day at normal/regular playschool
- Afternoon: 1 hour special education + 1 hour occupational therapy at the special school
Nika had severe sensory issues—her fine motor and gross motor skills were not up to the mark. She struggled to even pick up small things from the ground. The occupational therapy addressed these issues.
This schedule continued for about one and a half years, and they saw significant improvement. Nika started need-based communication, which was very useful for communicating with her.
🏫 Types of Therapy Available in India
Based on Sumathi's experience, here are the therapy options available for autistic children in India. Autism spectrum support often combines behavioral, developmental, educational, speech-language and occupational therapy approaches; parents can cross-check categories against CDC autism treatment guidance. For families considering which city to settle in India, therapy availability should be a key factor.
Therapy Options in India
| Therapy Type | Purpose | Notes |
|---|---|---|
| Applied Behavior Analysis (ABA) or Behavioral Therapy | Behavior goals, learning routines, communication support, daily-living skills | Ask who supervises the program, how progress is measured, and whether parents get home-practice guidance |
| Special Education | Academic curriculum, cognitive skills, communication | Can be group or one-to-one |
| Occupational Therapy (OT) | Sensory issues, fine motor, gross motor skills | Essential for children with sensory processing issues |
| Speech Therapy | Verbal communication, language development | For speech delays, language comprehension, expression and AAC planning where needed |
| Group Therapy | Social skills, following group instructions | May not work for all children |
| One-to-One Therapy | Individualized attention and curriculum | Often more effective for children who struggle in groups |
| Parent Training | Home routines, communication practice, behavior support, activity planning | Useful for NRI parents who cannot access daily therapy or need continuity after moving |
| Complementary Approaches | Family-chosen supports outside the core therapy plan | Discuss with a qualified clinician; do not replace speech, OT, behavioral/developmental therapy or special education |
How Therapy Centers Work
Sumathi explained the assessment process at therapy centers:
The Trial and Error Reality
Sumathi emphasized that finding the right therapy is a process of trial and error:
Every Child is Different
"For every child is different. Every child's abilities or difficulties are different when coming to autism. So we have to give it a try—everything we have to give it a try. If it suits for them, we have to continue. Otherwise, we have to go for another option."
Settlement time varies: Some children settle in 10 days (like Nika with one-to-one therapy), while others may take 3 months of crying before adjusting. It completely depends on the individual child.
🌍 India vs Abroad: Honest Comparison
Sumathi regularly talks to parents from outside India (US, UK, and other countries) through her Instagram. Based on these conversations and her own experience, she provided an honest comparison of special needs resources in India versus abroad.
Comprehensive Comparison: India vs Abroad
| Factor | India | Abroad (US/UK) |
|---|---|---|
| Waiting Time for Assessment | Almost immediate | 3-6 months, sometimes up to 1 year |
| Waiting Time for Therapy | Can start immediately after assessment | Must wait for turn after assessment |
| Session Flexibility | Can take as many sessions as you want/can afford | Government allots limited sessions (e.g., 2/week when child needs 5) |
| Cost | Mostly private out-of-pocket therapy; check National Trust/Niramaya eligibility separately | Government covers expenses |
| Alternative Treatments | Complementary options exist, but should not replace evidence-based therapy goals | Usually more protocol-driven around approved therapy paths |
| Transparency | Some centers lack transparency; parents may not see what happens in sessions | Better communication; teachers, therapists, parents all looped in |
| Therapist Quality | Varies; some centers are commercialized | Generally more genuine and structured |
| Inclusive Education | Available but limited; most special children can't fit due to attention/sensory issues | Better structured inclusive environments |
The Waiting Time Problem Abroad
Sumathi highlighted the significant waiting time issue faced by parents abroad:
Even after assessment, if parents want private sessions, the cost is very high. Most wait for their turn for government-funded therapy, which may not provide enough sessions for the child's needs.
The India Advantage: Flexibility
Why Some NRI Parents Choose India
"Here we don't have any waiting time. We can take however many classes we want. For example, my child is having severe sensory issues—I want to take two hours of OT every day and I can afford it—I will take it. I can go for it."
The practical advantage is flexibility: parents can combine speech therapy, occupational therapy, special education, ABA or developmental-behavioral support, and parent training when the child needs more intensity than a public system abroad may allow.
The India Disadvantage: Cost
Financial Reality in India
"In India, everything—whatever penny we spend—we have to take it from our pocket. We don't have any insurance policies here. We don't have any reimbursement policies here. Everything we have to afford by ourselves."
Use this as a private-therapy planning warning, not a legal conclusion. Before returning, verify current National Trust/Niramaya eligibility, local registered organizations, disability documentation and any employer insurance support separately.
The Transparency Issue
Sumathi noted that transparency is better abroad:
In India, some therapy centers don't allow parents to watch what happens during sessions, which can be frustrating for parents who want to know exactly what their child is doing and learning.
🎒 School Options for Special Needs Children
Sumathi provided insights into the school options available for special needs children in India:
Types of Schools Available
- Inclusive Schools: Regular schools that accept special needs children alongside neurotypical children
- Special Schools: Dedicated schools for special children, often offering therapy sessions to outside children as well
- Alternative Schools: Schools with different approaches (e.g., "no-backpack schools," Waldorf, etc.)
The Reality of Inclusive Schools
While inclusive schools sound ideal, Sumathi offered a reality check:
Who Can Fit in Inclusive Schools?
"There are so many inclusive schools, but 90% of the special children who have attention issues or sensory issues—they cannot sit more than five minutes in a chair. So they all cannot fit into an inclusive school."
Who can fit: Only children with very mild autism or very mild learning disabilities typically fit in inclusive classroom settings.
Sumathi's situation: "I cannot make my child sit in an inclusive classroom because she cannot sit."
The key is understanding your child's specific needs and abilities, then finding a school environment that matches—rather than forcing them into a setting that doesn't work.
📈 Nika's Progress: 8 Years Later
Nika is now 10 years old. When asked about her progress, Sumathi shared both the achievements and the realistic expectations:
Current Status
- Continuous improvement: "She's improving day by day, year by year—that I can confirm. We can definitely see."
- Not saturated: Unlike some children who plateau at a certain point and stop responding to therapies, Nika continues to show progress
- Academics: She does academics at her current center, which focuses on her academic development
- Realistic comparison: "When compared to a neurotypical child, she's not up to the mark—I would say like she's only 50%"
Ongoing Challenges
Sumathi is honest that challenges continue:
Growing Stronger
Experience and time have made them stronger:
Clarity Through Experience
"The experience and time also will make you stronger in this thing. Since we are used to all those things now, we are more strong than earlier."
"Now we definitely know how to handle the things—what we can do for her, what will help her. All those things we have in mind. We're very clear now—what we can do, what we cannot do, what she can do, what she cannot do. Depending on that, we'll be planning her things."
💡 Advice for Parents
Based on her 8 years of experience and conversations with many parents, Sumathi shared crucial advice:
1. Don't Delay—Early Intervention is Critical
The Danger of Waiting
"Usually what we do is we panic, we get worried, we run to places, we don't think clearly, we don't focus on what the child actually needs."
Common mistake: Listening to elders who say "It's okay, she will talk by two years, by four years, by five years. Why are you worrying? Don't compare your child with other children."
The cost: "If we might have observed right from one year—we have the doubt but we are not acting on it. If you are waiting for that particular time, if you're not accepting the thing, by the age of five the things might get worse. We are losing the valuable time."
The opportunity: "The three years of auspicious time which can do wonders in the future—if we might have focused on those three years with acceptance."
2. Trust Your Instincts
3. Acceptance is the First Step
Why Acceptance Matters
"First thing is we should accept the thing. Only when acceptance comes, then only we can see the things clearly."
Without acceptance: You take things for granted, make unnecessary mistakes, ignore valuable time
With acceptance: You can see the child's ability and capability, take appropriate steps for their growth
4. Assessment Timing Reality
Sumathi explained why formal diagnosis often comes later:
Why Centers Wait Until Age 2.5-6
Assessment centers typically don't formally diagnose before age 2.5 years (some wait until 6 years) because:
- The brain is still developing
- Some children with developmental delays might naturally catch up
- Early diagnosis could be wrong in some cases
However: This doesn't mean you should wait to start early intervention. You can begin working with your child even before formal diagnosis.
5. Mother as Therapist
For parents who cannot access therapy centers (due to location, cost, or other constraints):
You Can Be Your Child's Therapist
"Sometimes mother is the best therapist. If things are not working well, if situations are not favorable, then you can become the good therapist to your own child."
How: Sign up for online parental training programs, get trained, and work with your child yourself.
For safety, choose parent training that coordinates with your child's developmental pediatrician, child psychologist, speech therapist, occupational therapist or special educator. Parent coaching works best when it extends a clear therapy plan rather than replacing assessment.
Initial challenge: "Initially it might feel difficult for one or two months because they don't listen to us. We don't know how to handle them, how to make them sit, how to give them an activity."
Result: "But once we get trained, slowly we can make our child do things. They will definitely listen to us."
6. Don't Feel Guilty
For NRI parents who cannot leave their jobs abroad:
🏙️ Best Cities in India for Special Needs Resources
For NRI families considering a return to India with a special needs child, location matters significantly. Sumathi shared her knowledge about which cities have the best resources. Understanding financial planning for NRI return is essential because many private therapy costs are paid directly and scheme eligibility must be verified separately. The Government of India's health portal provides information on healthcare services across states.
City-wise Resource Availability
| City/Area | Resource Level | Notes |
|---|---|---|
| Bangalore | Best | Most therapy centers, special schools, inclusive schools, functional medicine options |
| Hyderabad | Very Good | Good number of options available |
| Other Metro Cities | Moderate | Some options but fewer than Bangalore/Hyderabad |
| Tier-2/Tier-3 Cities | Limited | Few options; may need to travel to nearby cities |
| Rural Areas/Villages | Very Limited | Often no local resources; must travel to cities for therapy |
Important Consideration for NRI Families
If you have a special needs child and are considering returning to India, settling in a metropolitan city—preferably Bangalore or Hyderabad—will provide the most therapy options and resources.
Parents in small villages often have no local resources and must travel to nearby cities for therapy, which can be challenging and time-consuming.
❓ Frequently Asked Questions
What are the early signs of autism that parents should watch for?
Based on Sumathi's experience with her daughter Nika, early signs included: not interested in clapping hands or imitating small gestures, not liking to be cuddled, sleeping away from parents, very little sleep during nights with constant crying from birth, no interest in birthday celebrations or playing with other kids, not caring who came or went, being cranky all the time, and most importantly—not responding to her name even when called 100 times. These signs were noticeable around 1.5-2 years of age.
How does the autism diagnosis process work in India?
The process typically starts with a pediatrician consultation, who asks basic questions about the child's responsiveness. If autism is suspected, they refer to a Child Care Development Center for formal assessment. The assessment takes 2-3 days, and results come within about a week. The report confirms whether the child is on the autism spectrum (ASD) and the severity level (mild, moderate, or severe). After diagnosis, families are advised to join a therapy center immediately.
What types of therapy are available for autistic children in India?
India offers ABA or developmental-behavioral therapy, speech therapy, occupational therapy, special education, one-to-one sessions, group social skills work and parent training. Complementary approaches should be discussed with a qualified clinician and should not replace the core therapy plan.
Should NRI parents look for ABA therapy, speech therapy or occupational therapy first?
Start with a developmental pediatrician, child neurologist, clinical psychologist or qualified child development center assessment, then build a child-specific plan. Many children need a mix of ABA or developmental-behavioral therapy, speech therapy, occupational therapy, special education and parent training. The first priority depends on communication, sensory, behavior, sleep, school-readiness and daily-living needs.
Are there government schemes for autistic children in India?
Parents should check National Trust schemes and local registered organizations before moving. Niramaya health insurance and Disha early intervention or day-care support may be relevant where available, but eligibility, documentation and city-level access must be verified from official scheme pages.
How do therapy options in India compare to the US/UK?
In India, families may get faster private access and more session flexibility if they can pay directly. The tradeoff is higher out-of-pocket planning and uneven transparency across centers. Abroad, public funding and school coordination can be stronger, but waiting times and session limits can be difficult. Check private quotes, therapist qualifications and National Trust/Niramaya eligibility before moving.
Can special needs children attend inclusive schools in India?
While many inclusive schools exist in India, Sumathi notes that 90% of special children with attention or sensory issues cannot sit more than 5 minutes in a chair, making inclusive settings unsuitable for them. Only children with very mild autism or learning disabilities typically fit in inclusive classrooms. The key is finding a school environment that matches your child's specific needs and abilities rather than forcing them into a setting that doesn't work.
Should NRI families with special needs children consider moving to India?
It depends on city, family support, work flexibility and the child's therapy plan. Bangalore and Hyderabad offer stronger therapy ecosystems, but parents should shortlist ABA or developmental-behavioral therapy, speech therapy, OT, special education, parent training, school options, written costs and scheme eligibility before deciding. Some families use India for intensive support and return abroad later; others stay abroad and use parent training plus local services.
Need Guidance for Your Family's Situation?
Every family's journey with special needs children is unique. Whether you're considering returning to India or need help navigating resources abroad, getting the right guidance can make all the difference.
Connect with families who understand your journey and get personalized guidance for your situation. For direct questions about autism resources, you can also reach out to Sumathi through her Instagram (details in the video description).
Chapters
- 0:00 <Untitled Chapter 1>
- 2:03 Introduction
- 3:29 Background
- 6:49 Journey of discovering that their kid has Autism
- 11:56 Therapy after initial assessment
- 18:05 Available options and how they down selected their facility
- 22:39 How is your daughter doing and progressing?
- 24:17 Advice to parents who have a special needs kid
- 29:50 Social stigma of special needs kids in India
- 34:55 Options for special kinds schools/training centers in India
Transcript
Auto-generated captions, lightly cleaned
0:02 For every child is different every child's abilities or you know difficulties are different when coming to this autism okay so we have to give it a try everything we have to give it a try if it's suits for them we have to continue otherwise we have to go for another option okay they will assess the child they'll be taking track of what he what the child knows or doesn't know where the child's on the scale on the spectrum is it mild or moderate or severe they will just check it out and depending on that they will be planning a strategy so we don't want our child you know to be dependent their whole life on someone else so usually what we do is we Panic we get worry we run to places we we don't think clearly we don't focus on what the child actually needs we felt that they might judge my child you know we felt we have that fear so when we got the acceptance I told around four four below five years of age we come we got complete acceptance yeah then we started telling our relatives family that she is
1:03 Having this condition because here we don't have any waiting time we can take how many classes we want we can take for example my child is having severe sensory issues I want to take two hours of OT every day and I can afford it I will take it yeah I can go for it if I want to try Aura here I can try it I want to try Homeopathy here I can try it if I want to go for any other particular treatment I can try it again inclusive schools there are so many inclusive schools but 90% of the special children who have attention issues or sensory issues they cannot sit more than five minutes in a chair so they all cannot fit into an inclusive School
2:03 Hello everyone welcome back to Desi Return today I am really excited to have Miss sumati on our show Miss sumati actually has her own YouTube channel and do a lot of things to educate families on families who have special need kids the options that are available in India and how families can cope up with that so sumti herself has an elder daughter who has a special needs and I'm really looking forward to this discussion and really grateful for her to be on our show to talk about the options that are available in India how families can you know plan if they have a situation where they are thinking about moving to India so I'm really grateful to understand their own journey and some of the insights that they can provide talking to so many families who are are in a similar situation with that welcome Miss sumati to the show and I
3:04 Really really appreciate you taking the time and talking to us today thank you so much so first thing I would like to say is I'm not that comfortable in English so in between while I'm talking I might talk in Telugu so please do excuse me for that because I'm not comfortable with English okay so
Read the full transcript (47 more sections)
3:29 Coming to myself so I am sumati my husband works in it so we live in Bangalore and we have two kids Andy so first one is Nika Elder one is she's 10 years old and second younger one is Sharon he four years old so Nika when coming to Nika Nika is an autistic child she's a special child Andy and she comes under autism spectrum disorder so and nin chapali we got diagnosed so Nika got diagnosed when she was like about 2.5 years old so that means like around maybe 7 to 8 years back okay so that time when we don't know about anything autism and when we are looking for some help or any information in the YouTube or anywhere else in family or friends also we didn't get that much information when we are struggling in those days yeah keeping that in mind so
4:31 For that reason particular reason so I just wanted to bring some awareness in people who are struggling you know for for for the information about autism or who don't know about autism and who are new to this word so I thought like why not why not I should start a channel in particularly in Telugu when where we don't have any information on this so so I have started YouTube channel but the thing is like after starting the channel only I came to know like most of the people don't like to come forward yeah into into social media or anything else in front of the camera bringing bringing their child and telling what is happening in their lives or what the struggles they were going through about the special children and all most of the people they are not willing to come you know forward so that's the thing I learned after I started my YouTube channel but but I'm really happy that after starting this channel so I have
5:33 Given a lot and lot of information genuine information and lot of moral support to so many mothers so many mothers they contact me through Instagram they tell they tell me about their about their children their stories their struggles and they keep talking to me about all these you know so that time I really feel like I have done a very good thing so starting this Channel and and trying to create awareness about this thing yeah so first of all yeah please feel comfortable to talk in whatever language you're comfortable I think the key thing is to get the message out so we can definitely kind of summarize in our description so that we get the message out that's the first thing and thanks a lot for all the services that you do right as you said a lot of people shy away to bring awareness you know parents and so on for different reasons and thank you very much for doing such a noble thought you know bringing that awareness talking to parents because they also don't know whom to approach right because you know a lot of people might not have the same
6:34 Awareness so you know kind of bringing that Community together so that they can share their own insights in how to better handle them or you know something that could work for one kid that can't help other kid and so on right it just kind of establishing that community so thank you very much for that and
6:49 Let's go a little bit into your own Journey right I think you kind of gave an indication about your daughter and she was diagnosed I think you know at the age of two and a half years so maybe you can start a little bit about you know was there anything that triggered or it was just in a regular routine that you know where you discovered about the situation and how was your reaction and how did you cope up maybe you can just walk through us just so that we understand the journey if you're yeah so actually autism diagnosis we got done at 2.5 years when she was 2 and a half years old but before that when she was like 1.5 2 years old so we used to to you know observe like she's not interested in many things like usually very small things like clapping her hands or you know imitating a small guesture something like that she's not at all interested and she doesn't like us to cuddle also she used to sleep away from us in the on the bed during nights so little little things I used to observe because she's completely
7:50 Behaving differently when when I see a typical neurotypical child and why that comparision has come means my brother is having a girl who is 8 months older than n Nika so when I compare both children they they are totally different yeah so during her second birthday so when we were when we were celebrating her second birthday so that time I really felt that something was wrong because she was not at all interested in the birthday celebrations usually 2y old means they'll be very curious and they will be you know enjoying and jumping and this all things will be there but she was not at all interested in you know playing with other kids or mingling with the family members she doesn't care who comes and who goes nothing is happening she will be cranky all the time and and right from birth also during nights he used to get very little sleep during nights so there were very so many nights where we were sitting you know awake during the whole night she was crying crying crying all through the night yeah so all these
8:52 Things were happening so then I talked with my husband he told like okay let's put her in a play school and see how she will be be doing later on we can we can do whatever we have to do yeah so so when she completed her second birthday her birthday is in April so in June we put her in a renowned play school so when we started the play School we don't know we don't at by that time we don't know anything about autism or we don't even know the word autism exist in children okay yeah so after we are sending her to school there we have this camera option also we can watch live what our kides doing in the classroom so every day whenever I used to see the camera I never used to find her in the camera because she was sitting in a corner in the classroom and she's playing on her own she's in her own world she's not at all happy playing with the other kids no Circle time no play no playing nothing yeah so every day when I go to the school to pick her up so I used to talk to the teacher I used to ask them why she is not why I
9:54 Can't see her in the camera so they to tell like she's not interested we will pull her into the Circle time whenever she's ready and the other thing which I observed is like she is not at all responding to her name when I call her so when when all the other children are very excited to meet their parents Nika is not at all showing any interest if Papa has come mama has come to pick me up nothing like that even if I am standing behind her and calling her name 100 times she was not at all responding so that's the time we really thought very serious something serious is happening and we have to go to the pediatrician so we we generally went to the pediatrician and we checked with him that she's not responding to her name yeah then he told like similar questions he asked like if she responds if you call or if she's in another room if she might she will come if we call her like that he asked two three questions and we our answers were no then immediately he told that that might be autism you better go to a child care Development Center where they will
10:55 Do the you know this assessment and all and they will tell whether she has the traits or not yeah so yeah we were very like we were very confused we were you know we never know about the thing that word autism so as soon as we googled that we completely broke down like I was into tears he's into tears we don't know what to do where to go whom to talk so we don't know anything anything nothing zero about autism so immediately we went to that child care Development Center where the doctor referred us to go so they gave us an appointment and the assessment went for 2 to 3 days so after the assessment after one one week or so they gave the report like she comes under the Spectrum and we call it as ASD Autism Spectrum Disorder so immediately they told us to go and join a therapy center which is in sahakar nagar that time so immediately we went to that Therapy Center and we joined Nika there for therapies got it
11:57 Great so I mean glad I think you know you're paying an attention I think some of these clues that kind of triggered that there might be something that you want to have a check and that's where I think it kind of able to discover through a diagnosis and able to so I think after the diagnosis I know you mentioned about like joining her in this development center right so how did the journey go and how was your immediate I know you kind of mentioned about like you know that's the first time that you're hearing about it and so how was that Journey for the next you know 1 to two years and as you continued with your kid in the development center and you as a parents scoping up and you know helping out with the kid so we started with a group therapy so that means in a classroom there will be like 7 to eight parents mothers including kids so they'll be giving a curriculum kind of syllabus kind of everything what we have to do so 45 45 minutes of session they will tell what to do so we have to get it done with the child okay since I'm very new
12:58 To to the environment so by that time I have never seen group of special kids there so it was very very hard for me to go and sit and make Nika work all those activities and by that time new is verbal new is a verbal child so in autism will'll be having two kinds of children like who will be completely non-verbal and who will be verbal so n come comes under verbal she has words she can talk yeah so she has few words that she learned from you know YouTube so whenever she was watching TV YouTube so she used to pick all those you know the vocabulary like shapes colors she can she knows all the alphabet she can identify a to z small and capital letters she can sort out all the you know shapes numbers Vehicles transport fruits like that that basic you know that knowledge what a 2-year-old should have that is there with her but the thing is like she doesn't use that words appropriately when we ask her to got it so since the environment is very new and she
14:00 Doesn't like to mingle with kids and that is a group therapy we started so she was cranky all the time she never wanted to go to the therapy center so she used to pull my hand she used to pull the you know bag which I carry there she used to tell let's go I don't want to stay here come let's go so like that it was very hard she was crying all through the sessions and and personally what I thought is maybe I was new to the you know this autism World however the therapist and the particular Therapy Center which treated the parents I didn't like the way they used to treat the parents know so they used to scold us they used to shout at us why you are not able to do that with your child if I can if I can do something with my child what is the use of coming me bringing my child to your therapy center I can sit at home and make my child learn all by right I don't want to go to the therapy center and sit with all those other kids as well so for one month I tried and tried and tried I couldn't fit into that environment Nika couldn't fit into that
15:01 Environment so we just left that therapy center and we were searching for some other options we were also trying in online they told like some online courses also there we can enroll and we can you know educate my child so we have enrolled for two three online sessions that two didn't work and how our situation is like we used to spend how much we can wherever whoever tells pay for this you go you take that assessment or or take that training you go there you pay some amount you get into that class so we were listening to everybody we were listening to everyone taking everyone's input so we were not clear at that time because we were very low we couldn't see clearly what is working for Nika so after like one year or one one and a half year once we passed all through this depression and all once we accepted that news condition is like that and we have to accept and we have to do whatever necessary things we can do for her so then we started to search for nice therapy centers which Nika can ad just so then we found one Therapy Center
16:02 It's actually a special school so there we found one special educator so what they doing is they are allowing outside children for 1 hour 2our therapies into their school okay okay so we didn't join Nika in the school but we were taking their one to two hour window sessions okay so there we got one special educator so that special educator we feel like it's a you know we were very happy we were lucky to meet that special educator because she worked a lot on Nika and we can see Visible Changes in Nika after she started working so she is a special educator she is a special mom she has a kid of 9y old that time 9ye old autistic child she has so she has done special education in this therapy and she's working on his kid as well and she's also teaching in that particular school okay so like that they assigned that particular teacher to Nika for one hour so we used to to take 1 hour special education and 1 hour occupational therapy because at the time new has very
17:03 Very very very you know many many sensory issues her fine motor gross motor is not up to the mark She's struggling for you know for even pick uping a small thing from the ground her fry motor is not good these all not good so there we have an occupational therapist as well so we opted for occupational therapy as well so we used to take Nika half day to normal school regular play school she's going and in the afternoon two hours one hour is for special education and one hour is for occupational therapy to this particular special school so like that we continued for one month and half year so parall we tried school as well and so I used to be very busy starting from morning to night I used to roam along with her to therapy center to school after lunch like that yeah but after that one year we have seen a very good change in Rika she started you know you know this need basis communication she started so was very very useful for us
18:04 For communicating with her that's great
18:06 So I think that's great I think you can see the progress maybe my one question was how did you down select this particular center right I think you know after like one year you are like looking at different options so maybe if we can talk a little bit about like you know the available options especially in Bangalore how did you evaluate them how did you down select them maybe that could help a little bit in terms of the prospective parents in how to approach that and you know how to think about it okay so coming to this Therapy Center actually no one told us we just Googling therapy centers near to our area so that's that's how we came to find this Therapy Center but coming to therapy center options in Bangalore we have a number of therapy centers So based on your you know the place where you live so I used to since I have to take her alone in the capab so we used to opt for the nearby centers you know so like that we got this Center so I can name it it's a bubbles School bubbles
19:08 School for it's a special school for special children so we have seen the reviews and all so people are talking very good about that we just wanted to see in every therapy for every child is different every child's abilities or you know difficulties are different when coming to this autism okay so we have to give it a try every everything we have to give it a try if it's suits for them we have to continue otherwise we have to go for another option so that cycle continues till now that cycle continues so like that we thought like that group group therapy didn't work for Nika so we l for one to one therapy yeah so that only Nika will be there in the room with the therapist she don't get to see another children because she will get irritated or she'll be she might feel uncom uncomfortable when she sees another children along with her yeah so we wanted to try one to one therapy there we got that one to one therapy they told like we'll give you one to one therapy with the special educator so we wanted to try it for a month so after one week 10 days Nika is very fine with the therapist she's
20:10 Happily going and sitting on the chair for 10 days that therapist you know it was hard for her to make her sit in the chair in front of her she was just simply roaming in the classroom yeah so after 10 days she was fine she's working fine so like that if anybody wants to you know you want to put their child into particular we have to give it a trial so we never know how the kid you know he will settled in that therapy center where you know earlier I told like we took her to group therapy right there the parents used to told tell me like their child took around three months to settle down for the whole three months the child was crying it after three months the child got settled it so depends so my child got adjusted in 10 days some kids might take three months so it completely depends on how the kids are taking and like like that we can just go and select a therapy which fits them so like we did so it's a basically like a trial and error in terms of would work particular kid and the you know the trainer like who is
21:10 Training the kids so how compatible they are maybe it's maybe naive question from M and maybe are there like you know based on the assessment of the child are there different centers that are specialized in certain things or they all like you know kind of in a similar Spectrum Maybe I'm trying to ask is like you know if someone was at a scale one or scale two or three I don't know if there is something like that based on that maybe there are certain training centers that are more G towards someone who is in that Spectrum versus someone who is in this spectrum I don't know again I'm just asking for my own information here no usually when we take the child see our process how it started we went to a child care Development Center and we got the assessment report there yes so whenever we go to a therapy center we just show that report and tell she's autistic again the therapy center where we are going they will do a complete assessment of the child okay they will assess the child they'll be taking track of what he what the child knows or
22:10 Doesn't know where the child's on the scale on the spectrum is it mild or moderate or severe they will just check it out and depending on that they'll be planning a strategy how they have to take forward so it doesn't come like if if the child is very se you have to go to only that particular Center no it's not like that every Therapy Center will handle all the kinds of children here okay that yeah great so how is Nika doing now and how has she progressed
22:40 Since then right now Nika is doing good I would say we can see her progress she's improving day by day year by year that I can come definitely we can see but when compared to a neurotypical child she's not up to the Mark I would say like she's only 50% you know like that so but but the happy thing is like where I feel happy is like she's not saturated at one point so in this you know in this condition some some parents complain that their kids got saturated in that point they're not at all developing beyond that point you know they don't respond to therapies they don't respond to anything anymore so I'm happy like she's not saturated at that particular Point till date she's showing progress she also does academics in the particular Center which she goes now so they're focusing on her academics also yeah she's doing good we are feeling happy for her but still we have lot of challenges
23:42 To face but we are taking them slow one at a time we are dealing with every new challenge that is coming up so right now I would say like you know the experience and time also will make you stronger in this thing so since we are used to all that things now we are like like more strong when we earlier yeah so now we definitely know how to handle the things what we can do for her what will help her that all things we have in mind we're very clear now what we can do what we what we cannot do what she can do what she cannot do so depending on that we'll be planning her you know things that's great so glad to hear
24:18 About the progress and then you know kind of continuing the development yeah so I want to switch gears a little bit I know I think you know from your own Journey talking to you know different parents and your own experience right where you didn't even know about the word autism to where you are right now where you are bringing that awareness maybe you know anything that you can share that would help the parents right you know how to handle this as a journey you know accepting it understanding this Dynamics so from your perspective you can share some of those insights or some suggestions advice I think that would be great in for the parents who have the situation see even now also people who talk to me so most of the parents I talk to they'll be from out of India other countries only so even most of the educated parents also they don't know about autism they never heard about the word autism so when they start seeing something abnormal with the child then only they will come to know that you
25:20 Know or if they they have taken an assessment that time only they will come to know about autism so usually when we hear that word or we Google what is about autism so the information we find on internet it will definitely scare us so we don't want our child you know to be dependent their whole life on someone what the child actually needs so first thing is like we should accept the thing only when acceptance comes then only we can see the things clearly unless and until we don't accept so we will we'll take things for granted so then we will do lot of mistakes which are not necessary for the kid yeah so once we got that acceptance only then we will know the child's ability and capability what they can do that then we can take appropriate you know steps for their growth if we are unless and until we are not accepting we'll just ignore the time
26:21 Okay let him talk he will talk he will talk everybody will tell like that only he will talk by the age of five he will talk by the age of three so if you are waiting for that particular time if you're not accepting the thing by the age of five the things might get worse yeah we are we are we're losing the valuable time yes if we know that there is something wrong with the child at the age of two and we are delaying it till age of five we are wasting completely three years of auspicious time which is you know which can do wonders in the future later on if have we we might have focused on the three years of with acceptance so a lot of the parents do that mistake they don't don't accept the things how they are and they try to improvise in a wrong way which the which the kid cannot you know cope up with yeah so if we can accept and see the things properly clearly then we can definitely do something useful to our kid and we might not worsen the case that's the thing we feel in our you know in our situation if we might have you know observed right from one year
27:24 We have the doubt but we are not we are not like ins why why why we are not doing like that usually what parents do tell you know it's okay she will talk by two years she will talk by four years why you are worrying don't compare your child with other child all all these things we get to hear most of the parents 90% of the parents they hear to their Elders what they tell so they don't they don't accept so even my parents or in-laws also they used to tell me the same thing but after second year we didn't listen to anyone our gut our instinct is telling like no no no don't listen to any you just have to take a step right now yeah so so that is the main thing whatever I tell you know if you ask me what is your this thing don't delay the time don't you know don't listen to everybody who are telling like it's okay wait for some more time some more time some if something is wrong if you really feel that something is going wrong you have to take a step yes so that is the major thing we have to do whenever kids are having any developmental delays now most
28:25 Of the parents are doing that I'm very happy so parents who are talk to me even if they're 10 months old also they could possibly see the things like they're lagging something what I have to do but usually you know when we go to Assessment Center the they the therapist usually they give it time like below two years or below 2. years they don't 2.5 years they don't assess the child because how the brain plays the game is like even though the child is having any development delays at the age of 2 2.5 sometimes it happens they might the brain might grow and come to a normal situation by the age of five got it so then the assessment will go wrong sometimes in cases I'm telling both are there or think is not good or delaying is not good so depends on the TR child is having yeah so usually what therapist the advises till six years they don't assess properly they don't tell that the child has Au autistic traits or they are under autism till the age of six they
29:26 Will just they will give a lenience period like observe observe observe like that they will be telling so that's what I'm telling both sides we have to keep an eye and watch our kids how they are doing how is their development how is their Milestones so that all we have to keep in mind and act accordingly yeah makes sense I mean early detection is always better but I think as you mentioned you know there is a spurt of growth maybe after two and a half years
29:50 So they can even catch up to six years along the same lines one question I want to ask is because you know in India there is this social stigma right I think you know when you have a special needs kid you know your relatives or your neighbors would say something which is maybe different for families who are living abroad right I mean you know that's another thing that they might also be concerned about we don't want people to give you know just an advice right you know we understand so from your own experience like how did you handle that or how things are evolving you know from the social stigma in terms of accepting the kid not for the parents but from a you know extended family and so on so anything that you can share I think that would be helpful because that's I think another concern for a lot of families to move back because they feel like lot of people who intrude and who might like you know they they don't want that kind of pess right they want to take the child as as the child is right not to have any other judgment so just curious anything that
30:50 You can share from your own experience and also talking to other parents how it evolved or changed or is still the stigma there see this stigma comes from the society because definitely there is a discrimination when we have a special child at home so automatically stigma comes because we feel like they don't accept our child they don't let our child play with their child so that is there it is there if you ask me if it is only in India no in all over the world where special child is there there is discrimination so first thing we have to accept the discrimination okay so actually my family also as I told you we don't know about anything about autism yeah same way our family also no one knows about this word autism yeah but still we have cases in our family like my husband's side we have one one one kid with Down syndrome and my M my father side U my
31:54 You know my pedana he is De and Dum by born he's DEA and dum so we have few you know cases in our both sides of a family but but but families doesn't know actually what autism is they might feel you know it's something else autism is something else yeah but touchwood I would say like when coming to this thing acceptance my family has accepted with their whole heart but during in the early days when no was early diagnosed at the age of 2.5 during that time 3.4 years we didn't tell our family that she's having this condition we used to hide yeah so usually people do observe right they used to tell like why she's not you know she's not responding to her why she is not talking they they try to communicate whenever we visit their houses but musika was not at all responding she doesn't care what they are asking she doesn't look into their eyes those things were there yeah they used to observe and they used to ask us why why you are not paying any attention
32:55 She's not normal no she's doing like this like this they used to tell we know the reason why she's behaving like that but we are not open yes we felt that they might judge my child you know we felt we have that fear so when we got telling our relatives family that she's having this condition yeah then I'm telling you then the way of you know the perception their perception of seeing Nika completely changed till that time when we are hiding the things they used to judge us like we were bad parents we are not focusing on her so that's why she's behaving like that etc etc etc but when we when we opened up that she's having this condition then people started to show concern oh oh is this the thing okay you can do like this you can try like this you keep talking to her you you take her to places or you put her in a school so like that some
33:55 Positive inputs have used to come to us so I I tell the people so lot of people will be in in this as you told because of the stigma they try to hide their children only when when we get open up when we tell that our particular child is having this condition then only at least half of the people who are judging us might change their perception then they will get to know Oho okay Oho maybe because of this the child is behaving like this because of this child is talking like this they might get an idea yeah so what I feel if you ask me what I feel is we are somewhat responsible to create the Discrimination to our child because we are not opening up we are not we are not telling what is happening so obviously we are giving a chance to them to judge us got so that's what I think so if we are hiding your child please don't hide your child we should open up and we should tell them what is happening then only people will get to know people will get to understand no
34:55 Yeah thanks for sharing your thoughts on that so continuing along that how are the options in India right so someone who is living abroad who has special need kids some of the concern is the availability of the facilities availability of you know the training centers or you know the care that the people take treating not treating like you know handling or working with the kids or even the schools so if you can talk a little bit not only just on the on the treatment or on the handling but also like maybe schools in general I think it gives a broader picture of the available options so that they get a reality check right you know yeah these are the things or these are things that are not available so that would help people who might have some thoughts about moving to India because of this situation okay because I told you like I'll be talking to lot of lot of mothers through Instagram some people call me some
35:57 People will text me so in that process I'll be asking how the situation is there how the situation is here so I'll be comparing lot of you know situations and conditions yeah depending on that only I'm just telling my opinion okay so usually what happens in India is if if we have to take an assessment we simply go to that particular Child Development Center or the child psychologist then they they get they do the assessment they will give the report like the condition of our child is it ADHD or DD something like that then immediately we go to a therapy center so immediately we'll find a slot we will start therapies yeah so when coming to other countries like USA or UK you know what happens is like they have to wait for the particular you know Child Development Center for an appointment it might take three months or 6 months even one year they have to wait that particular their their turn till then they have to wait wait wait and after they get there you know this thing they then assessment will be done then they will be suggesting few
36:59 Therapy centers or therapist then they have to take the therapy therapies you know yeah if they want to start on on their own if they want to go for a you know private sessions then it might cost a lot for them so usually people there they they wait for their turn to start the therapy and one more thing is like for example that kid has U severe sensory issues they need five classes in a week for occupational therapy but the government is allotting only two classes for a week that might not be necessary for the child then the parents they don't get satisfied with whatever they are getting because they feel like that that one guilt will be there like we are not able to give the necessary sessions we are wasting time with our kid so in particular cases only most of the parents who are living out of India they opt to come and get their kids treated here because here we don't have any waiting time we can take however how many classes we want we can take for of 0 every day and I can afford it I
38:12 Treatment I can try it but those options you will not be getting in abroad yeah they have to wait and wait and wait till they get their turn so that's the only difference here and there but the thing is like there the government will be covering all the expenses but in India everything whatever the penny we spent we have to take it from our pocket we don't have any insurance policies here we don't have any reimburse policies here everything we have to afford yes by ourselves yeah that's the that's the difference here and there but in terms of the options I think you said there's a wide options but even within the treatment itself so it's pretty much the same I mean you can expect you know similar then coming to therapies the I think like they are also getting very good therapies there and I think their therapist are more genuine when compared here sometimes things get very commercialized so in some some centers you know people parents want the transparency but some some centers they don't provide any transparency some parents you know most of the parents
39:12 They want they want to know what is happening with the child when they go inside a therapy center they want to the child what the child is doing throughout the whole session but few therapy centers they they don't allow the parents to watch what is happening inside so that transparence will be definitely missing here so when so when when we're talking about points like that yeah so there outside of India when we talk about like USA UK there the transparency is more so the communication will be very you know clear and everyone will be communicating starting from the the class teacher therapist parent every everyone will be looped and everyone will be updated with what the child is going on here it doesn't work like that and here if the child is autistic consider me
40:16 But again inclusive schol there are so many inclusive schools but 90% of the special children who have attention issues or sensory issues they cannot sit more than five minutes in a chair so they all cannot fit into an inclusive school only children with very milder version of autism or very milder version of learning disabilities they only fit in that inclusive classroom got I cannot make my child sit in an inclusive classroom because she cannot sit yeah so depends so depending on thatment we just you know differentiate but when compared to that that other countries we'll get a very nice environment we can put our child along with other kids as well that
41:16 Discrimination will not be there that understanding will be there differ okay yeah thank you very much for you know in the reality right I think these are some of the concerns and sounds like yes there is transparency issue there is some inclusiveness I you know even though it's available but it's also with some MCs in terms of how the kid can fit in yes is there anything that we haven't covered that you want to bring up I think that could help parents in a similar situation you know when they're thinking about it anything bring up and us some parents so they waiting for the turn to get assessment done so most of the parents they do consider coming back to India so that they might help more but you know
42:18 Situations maybe they may come leaving their you know it might not be possible for but most of the parents who do come back toia if they have parents here or any relatives here so how how the mother will think so I will stay in their place for one year or six months I will cover all the therapies here and I will go back to America or something like that so if parents are considering to come back if you have any more support that you can manage here you do come because coming to therapies here and there everything is same and the transparency is more more there than here yeah only thing is like you will get n number of you you will get to find n number of centers and N number of sessions if you want to give to your child only that thing if you cannot leave your job and
43:18 Everything there and you you cannot come here please don't take any guilt please don't take that guil at alls you can take online parental programs you can you can sign up for that you can get trained and you can train your child on your own yeah sometimes mother is the best teacher Andy if if things are not working well if situations are not favorable then you will be you can become the good therapist to your own child startingly it might feel difficult for one or two months because they don't listen to us we don't how to handle them how to make them sit or how to give them an activity we we never know but once we get trained slowly we can make our child do things they they will definitely listen to us so we have number of options to consider it's not like if a child is a special
44:18 Child then we have to you know come and the settle in India only it's not like that so depending on the situation we have options to choose from we can yeah definitely makes sense one other question that I forgot just wanted to confirm so I know we talked about these facilities right how is it in a just in general I know we talked about maybe in Bangalore that's your experience but overall in India like you know tier 2 tier three cities or big metros how are these options available just curious on that so I know that Bangalore has a number of therapy centers G special schools or inclusive schools or anything whatever you know functional medicines treatments we have number of options here yeah after that I feel like Hyderabad is also good Hyderabad also but remaining places I don't feel like and we have very number of options but we have few options but people who talk to me on the phone you know if they are living in a rural areas like you
45:20 Know even in in Telugu States also if they're coming from a very small small village they don't have any options there they definitely have to travel come to you know nearby City then only they have to take therapies there due to that reason also most of the people some people they don't they are not able to give therapies to their children you know so only this metropolitan cities only if you ask me we have quite good number of options for this special thing and all if you're living in a small town or Village we don't have that many options there yeah makes sense so thank you very very much Miss sumati for taking the time you know being open to share your journey you know which is not very common a lot of people hesitate for that and also explaining the hard realities in India right I mean you know these are the options that are available there are some pros there are some cons people have to make their own decision based on their own personal situation but I think you know the sharing the reality
46:21 Sharing the facts so that people can make a decision so once again thank you very much for being on our platform sharing your experiences with us and also all the things that you're doing to educate to bring these families together to help each other that's fantastic and good luck with everything on that we will share your contact information in the description so if anybody wants to reach out they can reach out so that they can talk and get better information yeah if anyone have any doubt regarding this if you are in a confusion whether your child definitely has the trait or you're simply overthinking you can definitely contact me I'm always available on Instagram so you can find my details in the description box and so lot of things are getting
47:22 Commercial these days treat so us what happens is like when people talk to me also if I tell them that I have followed this procedure they will try to copy that and they will try to imitate that okay might not help with their child so that's why I'm just insisting this point yes definitely so once again thank you very much Miss suti and appreciate again for being on the platform thank you a thank you so much for this opportunity thank you bye
🤝 Handling Social Stigma
Social stigma around special needs children is a concern for many families, especially those considering returning to India. Sumathi shared her personal experience and perspective on this sensitive topic.
Their Initial Approach: Hiding
For the first 2-3 years after Nika's diagnosis (until she was about 4-5 years old), Sumathi and her husband didn't tell their family about her condition.
During this time, family members would observe Nika's behavior and ask questions:
Without knowing the real reason, family members would blame the parents for Nika's behavior, assuming they weren't focusing on her properly.
The Shift: Opening Up
Once they achieved acceptance (around age 4-5), they started telling relatives and family about Nika's condition. The change in perception was dramatic:
What Changed After Opening Up
Before: Family judged them as bad parents who weren't focusing on their child.
After: "People started to show concern—'Oh, is this the thing? Okay, you can do like this, you can try like this, you keep talking to her, you take her to places, you put her in a school.' Like that, some positive inputs started coming to us."
Sumathi's Perspective on Stigma
Sumathi offered a thought-provoking perspective on discrimination:
She believes parents are "somewhat responsible for creating discrimination" by not opening up:
Her Advice on Stigma
"If we are hiding our child, please don't hide your child. We should open up and we should tell them what is happening. Then only people will get to know, people will get to understand."
"When we get open up, when we tell that our particular child is having this condition, then only at least half of the people who are judging us might change their perception. Then they will get to know—'Oho, okay, maybe because of this the child is behaving like this, because of this the child is talking like this.' They might get an idea."
Family Support
Sumathi acknowledged that her family has been supportive. They have cases of special needs in both sides of the family:
While family members didn't initially know what autism specifically was (they might have thought it was something else), once they understood, they accepted Nika "with their whole heart."