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Living with Autism

Link to the Episode

Anshu Bahanda: This is Anshu Bahanda On Wellness Curated. Thanks for joining me on this podcast. My mission is to empower you with health and wellness, so that you can then go and empower others. We’re aiming to explore how to live with and alongside people with autism. But let me start with this quote from author and autism advocate Dr. Temple Grandin. She said about her autism, the world needs different kinds of people to work with. Such an interesting idea. In today’s session, we discuss attitudes and approaches to autism and how we can all understand more so we can support those who are living with autism. Joining us today is Jonas Torrance, author and dance movement therapist who’s worked extensively with autistic children over many decades, the author of the influential book Therapeutic Adventures with Autistic Children and a private practitioner and supervisor registered with the association of Dance Movement Physiotherapy Psychotherapy UK. 

Tell me something, when we say that someone, a child or an adult, is autistic, what does that mean in terms of a medical diagnosis? 

Jonas Torrance: They will have had to have done various tests, either questionnaires which can be done by the actual person who’s autistic, or by relatives, friends, associates, staff in an institution and so on and also they might have been observed. There are various types of tests and they vary throughout the world. The different ones that people use. I’m in England and here in the UK we use the ADOS. A good diagnosis also includes some kind of analysis of the sensory needs of a person and also analysis of the way they move and any bodily issues as well. There should be lots of different people putting input into a diagnosis and the diagnosis needs to be made by, in this country, either a psychiatrist or a clinical psychologist. 

AB: So when a parent is watching their child, what signs should we be looking for in young children? When would you say that we should have a child tested for autism? 

JT: There’s a strong emphasis on early intervention, but a less strong emphasis on early diagnosis. It’s something that we need to have an awareness of. And the things that you need to be looking out for are poor muscle tone. So for example, if we’re talking about an infant, a baby who’s kind of a bit weak, does not really lift themselves up towards things and does not have good grasping skills, doesn’t stay well with the breast, moves away from the breast, shows disinterest and very importantly, perhaps doesn’t have much eye contact. The eyes may be making contact, but with all sorts of things rather than with mother’s face. So with a young baby, those are the main things you’re looking for. Then, as the child gets older, you’re looking at aspects of movement, how a child develops through the classic developmental stages of sitting up, crawling, standing up, walking, all those kinds of things. If they seem to be very disco ordinated in the way that their hands and feet are connected to their legs and arms, then you must make a note. A good way of describing it is once they learn to walk, this is how it is for everyone at first. But once they have the ability to walk, you might notice a young child kind of falls from foot-to-foot rather than walks with a kind of a coordinated pattern. And also the way that an autistic child might point, the way they make a finger and point is very important, you’ll notice that it might be different with an autistic child from, and I’ll use this word for the first time, a neurotypical child. Neurotypical means basically a child who is not autistic. And then, of course, the other crucial part in those early developmental years is speech. You need to be aware of how a child kind of originally, initially, babbles, makes sound, especially the variety of sound, the varieties, the O-R-E-U-R all those kind of sounds, then how they begin to form words, what they focus on in terms of speech, if they focus on objects rather than people, for example, their first word is wheel rather than mum. None of these things, I want to be clear, none of these things individually point towards autism, necessarily. It’s funny, I mentioned the wheel thing. My own brother said wheel is his first word. But the reason why he said wheel is because he was going uphill in a car with my mother and father and the spare wheel dropped off the back of the car and rolled down the road, so it was a big event, and he said “wheel”. You need to take all these things together. And if the whole picture presents a child that is ticking a lot of those boxes in terms of speech, movement, behaviour, and the way they hold their body, their kind of posture and so on, and eye contact, then you might want to be curious about it. But this is a very important point because not everyone can get a diagnosis like that. What you can do is you can make interventions really early on with young children which are helpful to them regardless of whether they’re autistic. 

AB: Give us an idea of what you mean by that.

JT: I kind of made some mouth sounds with my voice just now. And so that’s one of the things that we can do. Yeah, we can get a child, a young child, and we can make sure that we really face them so they are able to look at our face and we can make exaggerated mouth movements. You can exaggerate your “Hello, how are you?” and make all those fairly typical things that mothers do but really make it a practice. You do it every day, several times a day, really get the child used to your face. One of the features of autism is that an autistic child, they do not necessarily immediately recognize the human face as being any more important than something else. This is unusual because Most children focus on the face as soon as they have the ability to see the face from, they get the distance recognition. In terms of movement, if they’re okay with it, get them in water. So they have a sense that what water does is that it encases our body. So another feature of autism is a fragmented sense of self. That means that we often feel that our hands are not necessarily connected to the other next part of the arm and the elbow and the feet and the toes and so on, especially the limbs. This is very relevant for the limbs. 

AB: Really interesting. 

JT: Autistic children are kind of all hands, eyes and mouth. They kind of see themselves as very separated out different parts and they do not necessarily have a sense of a coherent whole body. So water is really useful because it can help the child feel held and contained in the water. Pressure of the water helps the child recognize their whole body. The same thing also applies to swaddling. If you wrap a child, then they feel contained and held. And that’s really useful because it gives them that sense of sensory integration. There’s a third one which is good tracking. So you really help the child to track objects. Another autistic feature is that quite often autistic children lose interest. They lose interest visually in something. They will look at it and then they’ll go, they’ll be somewhere else. An autistic child will scan. So you help them, you may even hold their head, you help them track an object and maintain an interest in it so that they see an object move across space and they’re able to concentrate on that object across space. All of these things are really useful for autistic children and neurotypical children. There’s no reason why you shouldn’t do it with a child who does not have a diagnosis. 

AB: And tell me something typically, Jonas, what kind of age do parents start realising that they need to have their children tested for autism? Could it vary a lot? 

JT: Yeah, it can. I was just thinking about it, actually, when you said that there are different phases, different stages. The 18 month stage is with parents who see that their children are specifically operating, moving in a different way and there’s very little verbal reflex. There’s not much tracking. They don’t look at their mother necessarily. Their body is floppy, they don’t feed well, that kind of thing. At five and six years old, usually what prompts it is something to do with going to school, a nursery. It’s something to do with social integration with other children. 

AB: Okay. 

JT: Then another later age is somewhere around the age of around nine or ten. When the academic aspect of school gets harder, it gets more focused and more about writing, listening and reading. And that’s hard for people who are on the autistic spectrum. And then the next sort of real classic time is kind of early pubescence 12, 13. And that’s often to do with secondary school, which is another huge shift for children and other life events like that. But I have to say that I’ve certainly met people in their 60s who have got a diagnosis. 

AB: Wow. You had said something interesting to me when you and I were chatting about how all of us could be on the scale at some point. So do we move along the scale? 

JT: That is a really, really good question. I need to preface this by saying that something that really annoys some autistic people is when neurotypical people say, well, we’re all a bit autistic and I understand why that’s so annoying, because autistic people often feel a real strong need to own their condition the way they are, and they want to own it and say “this is me, and this is exclusive and particular to me.” However, I will say that all of us can understand, every person, living human being can understand the different components of autism, the different parts. All of us understand what anxiety is like. All of us understand what it is to be a bit compulsive, to put everything in the right place. We all need that to be human beings. All of us understand what repetitive actions do, how they make us feel. But with autism, someone who has a diagnosis of autism, it’s all of these things collectively and a sensory component. So the way they see, hear and feel things in simple terms, the way that they perceive the world is different. The autistic view of the world is different to the neurotypical view. Putting it simply, going back to this idea of a continuum or a spectrum, it is true that all of us have some sense of what those autistic feelings are like. And actually, we totally need to. How can we be a parent of an autistic child otherwise? How could we do it, if we can’t look at the way our child is screaming on the floor and have some sense of why that might be? We might be wrong, but we have some feeling, some connection about what that might be. So speaking to neurotypical parents, I want to say to you, tune into that. Tune into your own very early experiences of life and the confusion and the uncertainty of experiencing simple things in life. Your child is experiencing the same, but there may be a different intensity and there may be a different combination of factors for that. Everyone has some sense of that. But as we go up the continuum, you get to a point, and hopefully with a good diagnosis, that point is marked as the point where a person is defined as autistic, where there’s a kind of a cluster of conditions that coalesce and form what we can call autism. We’re at a very particular time. We’ve kind of gone through a gathering and scattering phase and the gathering is this sense of autism. For about the last 70, 80 years or so, there’s been this sense of what autism is collecting together into one thing, into one sense of a diagnosis of what autism is. And now that’s pulling together and now it’s starting to come apart again, to scatter. This is the movement of the universe. It goes on everywhere, so that’s just natural. The scattering is all of the many diagnoses that you hear around autism like obsessive compulsive disorder, ADHD, attention deficit hyperactivity stuff, sensory processing disorders and so on. There are many. And so that’s exactly what’s going on. So I want to sort of help people recognize that autism is a collection of different conditions, what Donna Williams, the famous autistic theorist described as a fruit salad. So each part of the fruit salad, the different fruit is like a different thing, like a compulsive part or an obsessive part or a repetitive part. And each of us has a fruit salad. Essentially, we may have a pineapple in our fruit salad or we may have apples or we may have an orange and it varies with different people. One of the key things about helping children is really getting a clear picture of what they need, what their fruit salad is. 

AB: My experience with autism has been through some dear friends who are mothers to some wonderful autistic children. I’ve seen how hard it’s been for them to get access to resources, especially in terms of education. And they’re all over the world and in some of the countries in the world, it’s a real struggle. There is nothing available to help. So in terms of education, how can we help and empower autistic children, their parents and also autistic adults? 

JT: Obviously, that’s a huge kind of cross-political and cross-cultural question, but it really depends where you live. England is a really small country, but even in England, there are clear disparities across the country about the kind of resources that you can access. As I think about it, I think what I want to say about this is it’s very easy and completely understandable why parents chase after resources. I totally understand that they want the best for their children. I’m just going to make a note of caution about that. Sometimes we have to be careful what we wish for. I would say that the most useful resources that you will find are at home. I’m reminded of a Bangladeshi woman called Dr. Leedy Hoque. She won’t mind me mentioning her. She has quite a famous son called Aadil. She lived in England, and that’s when I met them. Her son is an autistic artist, and when I met them, he was a young boy, and he displayed a lot of very difficult behaviour, and he was not able to attend school. So at the time, there were quite a lot of resources available, so people went to the house. And Leedy was also very skilled at getting help. So she had this whole kind of team of people who would come into the house like myself, speech therapists, occupational therapists, educators, all different people working one to one with her son. And it was a great program, and she agreed that it was a great program. And we were all rather in awe of the way she had managed to do that. However, at some point she sat me down and she said, “Jonas, I’m moving back to Bangladesh” and I said, “wow, but you have all these resources”. And she said, “I know, and I’m very grateful for them but in Bangladesh, I will be in a house, and all I have to do is knock on one wall and my brother will be right there anytime of the day or night, and all I have to do is knock on the other wall, and my other brother will be there.” So she kind of had to go through that process of getting all that help in order to realise that the best help is people who really care and can get educated and are there because autism doesn’t turn itself off at night. 

AB: So then, in terms of leading their everyday lives, how can we help integrate autistic people into neurotypical people’s lives? Is that possible? 

JT: Yes, absolutely. And the beginning is you have to help the autistic child integrate into your home. That can be a journey. I do lots and lots of work with parents, or certainly have in the past, and I still do some. I often say to parents, there’s no such thing as an autistic child alone. Really, you have autistic families. Up to now, no parent has ever disagreed with that. They all kind of nod their heads and smile, because autistic children are very like big planets in the solar system. They have a huge amount of gravity, and they pull the whole family into the way that they operate. And before you know it, the whole family operates around the child. So what is useful for a family is to have an external observer, someone to come in, it can be a relative, and just say, “I notice that you all have your breakfast at exactly this time and in exactly that way and that’s because of a child that they’ve demanded that.” So you set the situation up so that your child is as comfortable as possible. Then you start to roll back some of the control. Sometimes autistic children can be very controlling. They can control the whole family. They can rule the family with an iron rod, even when they’re six years old. So you need help with that. And you don’t do it all at once. You do it one small step at a time, and you need to be playful about it. You do it gently, piece by piece and playfully. So that’s how you do it in the family. So you start to break down the sense of anxiety, fear, and holding. The autistic child is holding themselves and their whole family together. They think, “if I don’t do this, everything’s going to fall apart.” And what you do is you play with this idea of letting go about breakfast and eventually getting to a point where the child feels, “yes, home is okay. I can be free, and it won’t fall apart for me”, that’s stage one. Stage two is a big one, it’s school. And so at school, you need staff who are trained in autism, in face to face training, where they can ask you questions. They can say what to do, when and how to deal with this, so they have a strategy. Something also has to happen in the school, which is that the school has to accommodate the child. The school has to learn about autism in totality. The whole school, the janitor, the taxi driver, the bus driver, the people who make the dinners, everyone needs to understand that this child needs to get to the front of the queue. No, it’s not fair, but it’s what they need. It’s necessary for him or her. And when the school does that, an amazing thing happens. The school starts to blossom because they learn acceptance and they learn tolerance and they learn about diversity. 

AB: But do you know, Jonas, that’s so hard, what you’re telling me, because from my experience with my friends, from what I’ve heard from them, one actually had to go to school with her son because there was no training in the school. 

JT: It is, but it can be done. And also it does not cost so much money. A lot of the resources that are needed are within the community. I’ve worked quite a bit with the Autistic Society of Trinidad and Tobago, and some of the communities there are not well off. They’re poor, and the infrastructure is not amazing. But they have a thriving community there, and they have a place where people, all of the children and adults and parents can go, and they can receive training and school staff. So it’s good to have a hub. A hub is really useful. When you’re in a place where there’s very little in terms of resources or understanding— set up a hub. When I started, my mentor, Sheila Coates, the hub that she had was in her living room, in her front room, and we met there, and we tried therapies there, and we had autistic children there. That’s how it has to work. You start from home. 

AB: And in terms of therapies, Jonas, what are some of the therapies that you have known? Because I know you’ve got decades of experience with this. So what are some of the therapies that, you know, seem to have worked really well, artistic and otherwise? 

JT: I’m going to let you in on a secret and the secret is it’s not the therapy, it’s the therapist. That’s the bottom line. I think it’s useful for people to hear that and know. If I was to say dance and movement psychotherapy is the way that’s what helps autistic children, then people listening to this would all chase after whatever dance movement psychotherapist they could find. I don’t know if they are the right people to work with autistic children. They might be, but they might not. So obviously, some therapies are more suited to people who need space and understanding. Some therapies are more suited to something which is child centred. So to be clear about that, drama therapy, dance movement psychotherapy, art therapy, music therapy, all of the arts, basically, those therapists tend to be trained in ways to just be with a child and let the child express them. Now, that’s not where the therapy ends. It’s where it begins. What happens is, over time, the child starts to trust the therapist, and then they’re able to learn from the therapist. The therapist, once they have trust and once the child feels that they can be expressive and that they are safe, then the therapist can start to actually teach, to educate. So those kinds of therapies are useful if you’ve got somebody who’s very resistant or just very worried about somebody they don’t know doing something they’ve never done. On the other hand, cognitive behaviour therapy and so on can be really useful for older children or adults who have a good cognitive grasp, and they need to think about a problem, so they go with a specific issue. “I’ve got a problem with going to the shops because I get very anxious when I go into the shop if there’s too many people” – those kind of scenarios are very well affected by cognitive behaviour therapy, but only if the therapist has an understanding of autism and the way that you have to approach individual issues. Also, I would say that all of what’s called nowadays mindfulness approaches-so you have something called MBCT, which is mindfulness based cognitive behaviour therapy-anything which is to do with mindfulness or what you could call meditation, using the breath and the body, can be really helpful in helping people to become calm. Therapy can’t take place unless a person is calm. 

AB: What are some of the most useful resources that you’ve come across in your life that will help someone with autism? 

JT: The most useful resource that you will find is, and I’m sorry to sound cheesy, but it’s true is yourself, because what we need to fundamentally ask is what we are doing with autistic children. The answer is we are helping them come into their lives, to experience their life in a way where they can grow and develop and be who they really can be. And how can we do that except by this human contact? But the trick with autism is that autistic children often find human contact to be very difficult, to be complex, difficult to understand. So we need to really kind of work on that as neurotypical people-parents, teachers, therapists, the general public, anyone. We are the best resource people. I’m saying that genuinely. I’ve been around the world to different places and I can tell you that it is about people always, fundamentally. But those people need to be trained and the training needs to continue. A classic issue with staff is that they get trained once and then they think every autistic child they work with has to have the same approach. No, they will not. And they will need extra help as they go through their lives with autistic children. So the other resources you mentioned, they come in there. I like the idea of a hub. I think that’s really useful, be it somebody’s front room, be it a building that’s been made somewhere where people can meet regularly and just talk about and learn about autism, maybe even just watch something on the internet together and then discuss it. The minute you meet another parent who gets what you’re going through, you will not feel alone. Parent organisations are great. There’s one here in Oxfordshire called ‘Oasis’ and they put on events, training, but most importantly of all, they quite often just get together. They ask you to bring your kids and say, “we’ve hired out a bouncy castle and everyone just has a nice time.” And if there’s a child freaking out, nobody worries because they get it, they understand. 

AB: What about adults? What organisations like that are there for adults? Are there hubs for adults as well? Autistic adults, because they probably want friendships and they want so how does one deal with that? 

JT: I work with children, although a lot of the children I work with are what you would describe as young adults. I can tell you that the commonest thing when they’re able to tell me that children want is friends. So it’s not just adults who want friends, the children do too. Here in the UK there are hubs for adults of various types. For example, I’m thinking of someone I know, actually, who I see on social media, he and just other people he knows. They just meet, they meet up, they go for a meal and they just have a meal together and then they all separate off and go their different ways. There’s a hub here where people meet in a pub. That’s what people do in England. They meet in pubs and drink. There’s a group of autistic adults that meet in a pub and drink. They just do ordinary, normal things. Very often, autistic adults will need help to get started. If they’re adults and they haven’t had a lot of input as children, they may feel that they prefer the life alone and so they need to be really pushed into a sense of, you can do this, you can be with other people and see what it does for you. 

AB: And any last words of advice for people listening in? 

JT: Don’t stop, keep going. It is a marathon, not a sprint. Stay positive. Rejoice in your child. Rejoice in what they bring you. Years ago, I did a parents course and there was a question that went round the parents and the question was, what has your son or daughter taught you? They all had autistic children and we got to a man and there was a pause when we got to him and the man said, “my son has taught me what is really important in life” and the reason why he said that is because his son, I knew, had a very severe social sort of disorder. Whenever they took him into town or something, he would really have what’s called a meltdown. He would run into shops, smash all the things in shops, scream, try to take his clothes off, and attack people in the street. And this father had to be with this boy. He just had to be with him in these extreme circumstances. Stay with him, try to keep him out of hand’s way, try to apologise to people, but most of all, focus on his son and try to get him to be calm again. That’s why he said what he said. The lesson that he learned from his son, a hard lesson, was the most important lesson in life. 

AB: What an incredible chat we’ve had. Thank you so much. Thanks for joining us. Hope you enjoyed the Wellness curated podcast. Please subscribe and tell your friends and family about it. And here’s to you, leading your best life.