Transcript
Speaker: Hello and welcome to Thriving on the Spectrum, the podcast dedicated to empowering and supporting young adults with autism on their journey towards a fulfilling life.
Speaker: I'm your host, Arpata Mohan, and together we'll explore invaluable insights, expert advice, and personal stories that shed light on the unique opportunities and challenges young adults with autism encounter.
Speaker: So if you're a parent, caregiver, friend or ally, join us as we explore possibilities to help young adults with autism thrive.
Speaker: Today, as part of our series of episodes on long term planning for autistic individuals, we are joined by Mary Borwa.
Speaker: Mary is the mother of an adult with autism who used her own experience as a parent to create and lead a movement for autism awareness, acceptance and empowerment.
Speaker: She's the founder, director of Action for Autism, National Center for Autism, an activist, trainer, and consultant.
Speaker: She's been working relentlessly to create and expand services for persons with autism for more than three decades.
Speaker: We have Kavitha Krishnamurthy, the co-founder and co-director of Cambridge Academy, who is in conversation with her today.
Speaker: Let's listen to what they have to say.
Speaker: Hi, Mary.
Speaker: Hi, Kavitha.
Speaker: It's such a pleasure and an honor to have you with us today.
Speaker: Mary Barua, of course, I think needs no introduction to anyone, not just in India, but I think in South Asia, anyone who lives or whose lives have been touched by autism.
Speaker: Mary is one of the people who's really made the difference.
Speaker: If we have, you know, more services and if it's been a little easier for younger parents like us to walk this path, you know, on the autism journey, I think it's been because of Mary and her team and the kind of path they charted.
Speaker: I think it was the lack of services 40 years back that really led to Mary looking at, you know, what needs to be done and starting the Organization Action for Autism or AFA, which has been a trailblazer in terms of really defining the kind of support that individuals and families with autism require.
Speaker: AFA and Mary continue to lead the way and it's truly a privilege to have you join us today, Mary.
Speaker: Thank you very much, Kavita, and for your very, very generous welcome.
Speaker: So we'll begin, I mean, you are a visionary, and maybe we could begin with looking at, you know, Ananda and your vision for Ananda.
Speaker: I mean, what was the gap that you were trying to address and how did Ananda come about?
Speaker: So, you know, I would say about 20 years back, I started thinking about what would happen to individuals like my son, for instance, who would require some support all their lives.
Speaker: Because Neeraj was, you know, he was non-speaking when he was young and required significant amount of support.
Speaker: And of course, he is kind of, I would say, more minimally speaking.
Speaker: He's not very fluent in language or anything.
Speaker: And he does a lot of things himself now.
Speaker: He's quite independent.
Speaker: But, I mean, there is no escaping the fact that he will require significant support when, you know, if he were to be living on his own and when we were not there.
Speaker: So, you know, that's when around 15, 20 years back, I started thinking about it.
Speaker: And I remember for a long time,
Speaker: I kept looking around for somebody who would give me an apartment or a house to use for a while where I could start something.
Speaker: In fact, Autism Network, the journal that we bring out, in the wish list, there was always be an apartment or a house, you know, that we could start something in.
Speaker: But of course, you know, that kind of wish doesn't usually come about.
Speaker: So we, and then in between, I had also thought of buying a plot of land,
Speaker: when some land was going a bit cheap, but I need more parents to join in.
Speaker: But most parents weren't even thinking about it.
Speaker: So it was very hard.
Speaker: I got two other parents who agreed, but we couldn't put together the money.
Speaker: And then eventually this plot, you know, everybody said, let's take this land, which is quite outside the city limits.
Speaker: And, but I had some concerns because, you know, we are located in one place where the most of our work happens.
Speaker: And this is something that's pretty far off.
Speaker: And also because, you know, at our workplace, we work a lot at maintaining a kind of an attitude and philosophy that's a backbone of our work.
Speaker: And to replicate that so far off,
Speaker: We had concerns, but ultimately, since there was nothing available, we took that on.
Speaker: And that's how we started it.
Speaker: And of course, there were lots of board members who had other ideas, you know, and you have to take everybody along as you go.
Speaker: And eventually, Ananda came about and we managed to construct something and we started this project.
Speaker: one apartment currently that we are running which has at the moment 11 people staying there and a bunch of others who come for short stays and go back in their family situations and stuff like that.
Speaker: So, you know, how did you all finance this whole project?
Speaker: I mean, it won't be, it wouldn't have been easy to, you know, kick off something at this scale.
Speaker: Oh, yeah, it's definitely not easy.
Speaker: And the thing is that many of us in the organization are full-time volunteers.
Speaker: So it's not as if we have a lot of money or something like that.
Speaker: So this plot of land we got in the village, we convinced the panchay to give us the land.
Speaker: And because it was village land, it was cheaper.
Speaker: And of course, we got it converted.
Speaker: You do the change of land use kind of thing.
Speaker: I don't know if it works everywhere, but in Delhi, that's there.
Speaker: And then to do the construction was the toughest part because when we got the land from the panchayat, the government was also involved, the Haryana government.
Speaker: And for them, we had to, they told us, you have to build a community thing and you have to build a, you know, admin and other kind of stuff.
Speaker: It was easier to get money for those than to actually get money for the apartment where a youngster's will stay.
Speaker: Nobody wanted to give money.
Speaker: Why should I give money for a home, for somebody else's home?
Speaker: So that was really, really tough.
Speaker: And eventually the funding we got through a company where there was a grandchild that we had supported and they were the major funders for the apartment.
Speaker: And I know that we plan to set up another apartment because we've got lots of land there.
Speaker: And it's not going to be easy because nobody wants to give.
Speaker: And I can understand why parents get together and start.
Speaker: You k now, now you have parents who are starting homes.
Speaker: They do that because every parent contributes.
Speaker: So if you have 50 parents, then you're able to raise the money, right?
Speaker: So every parent is giving a certain amount.
Speaker: Now, we are a parent-driven organization, but we are an organization.
Speaker: And...
Speaker: We serve a lot of families, right?
Speaker: And we cannot just take money from all of them.
Speaker: It doesn't work.
Speaker: It works a little bit differently when you're an organization.
Speaker: I think the only thing we have in our favor is the many years of work we have done with autistic people.
Speaker: So the way we understand and the systems we know how to put in and stuff like that.
Speaker: I would say that's the only advantage we really have.
Speaker: But financially, it's a tough way to go.
Speaker: Very difficult.
Speaker: Parents, I mean, when their adult children come to Ananda, do they not pay anything there?
Speaker: No, no, of course they pay.
Speaker: That is why we did not take any money for setting up and stuff like that.
Speaker: See, for all our services, we have a system of a sliding scale based on your financial means.
Speaker: So that applies at Ananda also.
Speaker: Right.
Speaker: Currently, we do not have we do have somebody who are very minimalistic, but we intend taking more who we support.
Speaker: But till the numbers go up, it's going to be difficult.
Speaker: We have to have another department up and running.
Speaker: Then we will be able to provide for a few more people who don't have the means to be able to pay for something like this, because the reality is you have to charge.
Speaker: And in a place like this, you have to pay your people well.
Speaker: Right.
Speaker: Because your kids are there for life.
Speaker: People have to be well paid because I'm not going to be there forever.
Speaker: The other team members who are there are not going to be there forever.
Speaker: So when we are not there constantly driving it, there are others running it.
Speaker: It will be just the system that's making it run.
Speaker: And if you're not paying people well, you will not get good services.
Speaker: It's okay in a small organization.
Speaker: In a small organization, you know, you want to do it because you love it and you're doing it.
Speaker: You know, that's how we started.
Speaker: And we used to pay peanuts at the time.
Speaker: But now we can't do that anymore.
Speaker: And to make something sustainable after we are not there, people have to be well paid.
Speaker: And to pay them, we have to get the money.
Speaker: And that's the only way you can have the money.
Speaker: Absolutely.
Speaker: And I think it's fair enough because it is quality care services which are being provided.
Speaker: So it's absolutely, I mean, it's really fair enough to charge.
Speaker: Which brings me to a point, you know, I would imagine it's not very easy finding, you know, people who staff the entire institution.
Speaker: Right, right.
Speaker: Yeah, that's, you know, when people ask me what's the most important thing, I say the team that you have.
Speaker: It is not the rooms that you have.
Speaker: It's not the fancy carpets you put in or the fancy things you put in there.
Speaker: It is the people.
Speaker: Ultimately, it's the people that make or break a place, right?
Speaker: So getting the people is difficult, which is why our expansion is really slow.
Speaker: You know, like we've been all this time and we only have 11 full-time residents.
Speaker: That is because we are constantly recruiting people.
Speaker: We interview a lot of people, but we don't take them because we don't feel that these are the right people.
Speaker: So it takes us a while to get the right people and then to train them, to give them the understanding of not just what I have to do to support them, but respect them.
Speaker: and dignity of individuals who are so vulnerable.
Speaker: So to move towards that takes time.
Speaker: So the people you get are the most difficult.
Speaker: And I think what happens is that one of the good things that has started happening recently is when we started, all our team members were from outside.
Speaker: We now have village people wanting to come and work.
Speaker: And I think that's the nicest thing that we said that will happen, it will take time.
Speaker: We don't sit around stressing about these things.
Speaker: And now we have the village people coming in and now we have a number of people from the villages who are working with us.
Speaker: And that's the way we wanted to move eventually and that's beginning to happen.
Speaker: We'll always have a mix of people who come from other places and some people who are from the village itself.
Speaker: Quite wonderful, Mary, that kind of integration.
Speaker: And I'm sure you're also, in a sense, integrated into the village community itself.
Speaker: I'm sure there must be so much of, you know.
Speaker: So, Kavita, you know, that has always been something that has been very strongly in our minds.
Speaker: And I'll mention something here briefly, you know, like initially, you know, 15 years back, everybody used to say, you can't take anything in a village or something, you know, as if they must be within the community, as if the village is not a community.
Speaker: You know how urban people think that anything outside the city or town is not a place worth living in, right?
Speaker: Right.
Speaker: In this place that we've come to, the villages are lovely.
Speaker: We were actually warned about the people who live there.
Speaker: We were told that they are not a nice community and all of that.
Speaker: Lots of people in Gurgaon told us that.
Speaker: The villagers are some of the loveliest people we could have had because we went with a clear, open mind, no assumptions, no preconceived notions.
Speaker: And what has ended up happening is that when there is any ashadi in the village or a new child is born and there is something happening, our kids are all invited.
Speaker: Right.
Speaker: And they all go there.
Speaker: How lovely.
Speaker: They all go for it.
Speaker: So what is happening is that the villagers are getting used to our people.
Speaker: They often go for, we are in a lovely rural part.
Speaker: So they go for treks outside.
Speaker: Now the weather is changing.
Speaker: So they go for more walks outside, you know, the place where we stay.
Speaker: So when they go for treks, the villagers know them all.
Speaker: So everybody knows them.
Speaker: They're in their homes.
Speaker: They're at their events.
Speaker: So that has really created a lovely, you know, what should I say, sense of community.
Speaker: They always look out for our people.
Speaker: And recently what we have started is we had it in a small way earlier.
Speaker: Then it all shut down for COVID.
Speaker: So we also run computer classes for the village children.
Speaker: Right.
Speaker: So it's a way of giving back to the community.
Speaker: So we run computer classes for the village children.
Speaker: So we have about 40 kids who come for computers.
Speaker: And we also have set up a health clinic where we have doctors certain times and days in the week so that the villagers get, you know, treatment.
Speaker: Basic treatment, you know, anything serious, you'll have to go to hospitals, but everyday fever, flu, cough, cold, dental issues, minor dental issues.
Speaker: So we have set up a health clinic because, I mean, the villages were so nice to us.
Speaker: It was important for us to give back to them as well.
Speaker: So we've set it up and we're very much a part of the community.
Speaker: Very much a part of it.
Speaker: That's really so, yeah, it's so heartening to hear this because, I mean, the scope of, you know, you start something and then the kind of ripple effect it has and how it spreads and this, you know, osmosis between the two communities.
Speaker: I mean, it's just so wonderful to hear.
Speaker: There's something you just said, Mary, which also, you know, I wanted to bring our attention to.
Speaker: You know, we had this conversation with Shivang a little earlier in the day to just understand from him, you know, what life is like at Ananda.
Speaker: And one of the things that struck me about what he said was, he says that people here respect us, which I thought was really so wonderful.
Speaker: And I also realized that it may not be something...
Speaker: you know, very easy to create as a culture, as an organizational culture.
Speaker: So I really wanted to understand from you, how do you create this environment that really respects the autonomy and the dignity of each individual, gives them their choices?
Speaker: How do you do that?
Speaker: You know what?
Speaker: I think one of the important things is, and particularly when you have autism, is that you often don't have agency.
Speaker: Because you have difficulty in saying that, you know, I don't want to do this or I want to do this.
Speaker: Most autistic individuals have things decided for them by their families.
Speaker: Whether they like it or not, very often they are forced to do what the family demands.
Speaker: And not because the family is coming from a bad place, because it never occurs to them that they can also make up their minds.
Speaker: So agency is something autistic people... See, in India, the sense of agency in a family is very limited for most places.
Speaker: Parents take all decisions.
Speaker: Yeah.
Speaker: what I'll study, what I'll wear, who I marry, what work I do, how many children I have.
Speaker: Everything is kind of decided by the parents.
Speaker: So then, you know, when we talk to families about agency for the autistic kids, very often they have a hard time understanding that.
Speaker: But I think they eventually get it.
Speaker: And for a lot of the youngsters who come to stay with us, for the first time, no one is forcing them.
Speaker: Right?
Speaker: That does not mean they're running wild.
Speaker: What we create is an environment that is suited to autistic people.
Speaker: We make it a structured environment.
Speaker: We give them predictability through the day.
Speaker: Once there is a lot of predictability, then when there are changes, they're able to deal with it better.
Speaker: And then when there are things that they want to do,
Speaker: Like, for instance, many of them have this need to have the mobile with them and go and watch all kinds of things, spend lots of time on it.
Speaker: Usually what has been told to them is you can't do it.
Speaker: Stop looking at the mobile.
Speaker: We would never do that.
Speaker: We would instead put it into this schedule that, you know, of course you want to look at your mobile.
Speaker: Of course you can do that.
Speaker: But maybe we have certain times when you want to do it.
Speaker: This is your work time.
Speaker: And then when it's your free time, you could do it.
Speaker: So, you know, like if you do that kind of thing or supposing if somebody doesn't want to, you know,
Speaker: Say there is something is happening and activities happening.
Speaker: If one day somebody says, I don't feel like doing it, we do not insist that you have to do it.
Speaker: Sometimes all of us have the need not to do something.
Speaker: Right.
Speaker: So on a regular basis, they are happily following what they have to do.
Speaker: Once in a while, if they don't want to do something, why do we have to force them?
Speaker: But that is what usually tends to happen.
Speaker: You have to do it.
Speaker: We say, okay, if you don't feel like doing it, that's okay.
Speaker: And if you change your mind, come and join us.
Speaker: So we leave the option and you'll be surprised how often they'll come and join you.
Speaker: So this thing of giving them agency, allowing them to decide, sometimes we let them decide some of the things that they would want to do.
Speaker: So we give them various options and say, okay, you can take a decision.
Speaker: And then if we think that they should do something, we give them the reason why.
Speaker: So for instance, there are some of them who would only want to wear, Siobhan for instance, would only want to wear formal clothes.
Speaker: A lot of what is tickets because their dads wear that, their dads buy them that, so they learned I only wear formal clothes.
Speaker: So now when he's going for sports, you can't go in your formal trousers and shirt and all of that and shoes.
Speaker: So it's not that we tell them, no, you can't wear that.
Speaker: We tell them, you know, you're going to play games and why wearing shorts would be better and why wearing the shirt with the collar is going to be difficult.
Speaker: If you help them understand why, they will do what you ask them to do.
Speaker: So that's very different from saying, you can't wear this.
Speaker: How can you go for sports in this?
Speaker: Which is what they usually encounter.
Speaker: So that is why this is something I know you're right.
Speaker: He's told us.
Speaker: In fact, the first time he told us spontaneously, we just felt so, I think we almost teared up.
Speaker: He said, That's something he said because he feels valued and respected.
Speaker: And I think that's important for all of us.
Speaker: Each one of us is valued and respected.
Speaker: And they don't really less than we do.
Speaker: And I think it's such a testimony really, you know, in terms of the kind of work that Ananda does and the kind of people who are working with them, you know, who are obviously treating them with that respect that they are feeling that respect.
Speaker: So that's the training they have to give them.
Speaker: Yeah.
Speaker: which I mean, it must be a lot of training of staff, you know, that you need to do for this.
Speaker: A lot of training, a lot of training and often ongoing, you know.
Speaker: So one of the things that I often tell people is that when we have a team, whoever's there at a residence,
Speaker: and particularly those who are working directly with the disabled residents, it's very important that they are treated exactly the way we would want to treat our disabled residents with the same respect and dignity.
Speaker: Because when you make a distinction between, okay, these are the autistic people, so they must have nicer things.
Speaker: And these are the people who are working, they can have, it doesn't matter really what they have.
Speaker: Then you're actually telling them that there can be a hierarchy.
Speaker: Right.
Speaker: And in the long term, one has to keep in mind.
Speaker: And again, I keep saying, you know, like when we are not there, when the first level of, you know, people in charge are not there, who are the most vulnerable in a resident?
Speaker: It is our people.
Speaker: So when we create a hierarchy and we are giving the message, it is okay to have different rules for different people.
Speaker: The ones who will face the most discrimination are the most vulnerable ones.
Speaker: So if from the word go, you ensure that it does not matter whether you're the one who's doing the supporting or the one who's being supported, you're all treated the same way.
Speaker: And that is a very important thing to have, especially in a country like ours, where we have this thing of, you know, somebody who's supporting me at home or someplace else, and they don't need to have the same things that I do.
Speaker: They can eat different food, you know.
Speaker: I can give them just anything to sleep on.
Speaker: It doesn't matter if their mattress is clean or not.
Speaker: So these are very, very important things.
Speaker: It doesn't matter in developed countries.
Speaker: Because everybody, you know, there's a certain lack of hierarchy there, right?
Speaker: Unless if you're the president or extremely rich or something, because the average Joe is, you know, there's not a great hierarchy.
Speaker: Here there is.
Speaker: So, and if you're the help, then you don't sit with me, you sit there and eat and, you know, all that kind of stuff.
Speaker: So that is something, it is important from the word go to ensure that the people who are supporting them have the same stuff.
Speaker: as the ones who are being supported.
Speaker: So to create that environment, that positive, respectful environment, if I'm treated with respect, I'll treat you with respect.
Speaker: So that has to be very much there.
Speaker: Right.
Speaker: Lovely.
Speaker: That's a lot.
Speaker: Yeah.
Speaker: Yeah, no, and it's a very valid point.
Speaker: It's also something that I remember Nina Waag had mentioned in her episode.
Speaker: She mentioned exactly the same thing, that you can't have hierarchies in care.
Speaker: I mean, I'm
Speaker: you know, from the people who are the caregivers.
Speaker: Yes.
Speaker: Yeah, lovely.
Speaker: They have to be treated exactly the same way, you know, helping them see, you know.
Speaker: And actually, people like Shivang who have
Speaker: most people have more difficulty with than with people like my son because my son looks obviously disabled.
Speaker: Shivam does not look obviously disabled.
Speaker: So therefore, the belief people often have is, oh, he's just misbehaving.
Speaker: He can do it properly well.
Speaker: That's what he's experienced all his life also.
Speaker: Because he doesn't, he looks, he's so, you know, verbal, right?
Speaker: But even though he's so verbal, he cannot always express what he's feeling.
Speaker: There are times when he's stuck for words, when there are some emotional stuff he needs to share.
Speaker: And there are things he needs to do, not because he's being difficult, because that's how his autistic mind is working.
Speaker: And people find it very hard to understand that because he doesn't look autistic.
Speaker: Right, right.
Speaker: Yeah, I mean, it's just so much to think about all that you're saying, Mary.
Speaker: I mean, it's like so many pointers.
Speaker: And I think, you know, the minute we start giving them agency and start respecting them and giving them choices,
Speaker: I think a lot of, at least some of the difficulties that people consider are difficulties associated with autism, you know, so-called challenging behavior.
Speaker: Some of that also actually goes away because they are feeling so much more control of their lives.
Speaker: Absolutely.
Speaker: See what we see as and it took us many years to really understand all this.
Speaker: I mean, AF has been there for 30 years.
Speaker: So you can imagine how long it took us.
Speaker: The thing is that, you know, what is what has always been seen as challenging behavior is usually the individual's response to what the environment is doing to them.
Speaker: And if the environment is correct and the environment is suited to them, then you won't have the behaviors.
Speaker: Because the focus earlier typically used to be challenging behaviors and how you fix it.
Speaker: But if you look at creating that environment, this whole thing just goes.
Speaker: There is no this thing of challenging behavior which you need to fix.
Speaker: It's all about giving the environment so that they are able to function well.
Speaker: Absolutely.
Speaker: And I think, I mean, from what we hear from you and what we've heard from Shivang and Angad and Sarbhajit, I think Ananda and possibly all of AFA's work is like that.
Speaker: And, you know, what we're talking about in this podcast, in this podcast series is really how do we create these environments that help autistic people thrive?
Speaker: And it's been so nice, Mary, talking to you and really hearing your insights and your own understanding of how an arrangement or an experiment or an initiative for lifelong care is emerging, which is extremely inspirational for all of us.
Speaker: So before we leave, Mary, anything else you want to just say?
Speaker: No, it's just to say that, you know, we are still learning.
Speaker: And I must add that a lot of our learnings have come from the autistic colleagues we have with us.
Speaker: They have taught us a lot.
Speaker: And from the other autistic people we know, it's been a privilege to get to know over the years.
Speaker: We have somebody on our board, of course.
Speaker: And in addition, you know, there are so many others we know.
Speaker: Most of our learning has come from them.
Speaker: And whatever we do is trying to keep in mind that the autistic mind thinks differently and to try and understand things from their perspective.
Speaker: And this is something that we try to do in all the work that we do.
Speaker: But honestly, we still have a very, very long way to go.
Speaker: A very long way to go.
Speaker: Lots more learning to do.
Speaker: Oh, yes.
Speaker: But we've also covered some way.
Speaker: I mean, if you were to look back at what it was, you know, 40 years back and today we've covered some way.
Speaker: Yeah, that's the journey, I guess.
Speaker: Yes.
Speaker: So thank you so much, Mary.
Speaker: It was such an insightful conversation.
Speaker: And thank you so much for joining us and sharing all your insights with us.
Speaker: Thank you.
Speaker: Thank you so much for joining us today.
Speaker: If you haven't already, make sure to subscribe to our podcast on your favorite platform so you never miss an episode filled with inspiration, support, and hope.
Speaker: On our next episode, we will be joined by the residents of Ananda, including Shivang, who we mentioned in this episode, to better understand their perspectives and experience being at Ananda.
Speaker: Until next time, take care, stay positive, and keep thriving.
