Unpacking Autism Ep.1: Autism today: a changing conversation with Dr Shermina Sayani

Reena:

Hi everyone, thank you for tuning in to today’s podcast. I am super excited about the person I’m introducing you to today. Her name is Doctor Shermina Sayani, who works for the NHS East London Foundation Trust. She’s the paediatric lead for the autism pathway, medical advisor for adoption and fostering, and consultant developmental paediatrician in community child health. She’s involved in some incredibly fascinating research projects looking to reduce the waiting time for an autism diagnosis, but I’ll let her tell us a bit more about that. 

On top of all of that amazing stuff, Doctor Sayani is also a poet and a playwright, having scripted and delivered live productions in the Ismaili community. She’s just an all-round incredible human being and I am delighted that you’ve been able to take some time out today to share your thoughts with the parents tuning in and our listeners. So, Dr Sayani, welcome. Thank you for being here.

Dr Sayani: [1:18]

Thank you so much Reena. Thank you for inviting me – a very grand introduction. I’m just really pleased to be getting involved in this actually, and being able to share a lot of information that I think families don’t often hear – so thank you.

Reena:

Oh, you’re very welcome. So, tell us a bit more about you. Who is Doctor Sayani?

Dr Sayani: [1:39]

So, as you mentioned, I’m a children’s doctor. I have probably been working in the NHS for about, I think 18 years now. And I’ve been a consultant – so a senior doctor – for about five years and I got interested in autism during my junior doctor training, so about a decade ago when I picked this particular specialty, which is called community paediatrics, which often gets involved in the diagnosis of children with autism, because we specialise in child development and obviously autism spectrum disorders are a kind of developmental condition. So yeah, so that’s kind of who I am from a work point of view. I do work in the NHS. I also work in the private space as well where we run a kind of small clinic that works in conjunction with psychiatry, which is fantastic because we know in autism there can be mental health comorbidities or connected conditions. So I work a bit in both spheres. So yeah, that’s me. And on the side, I do a bit of writing and, you know, have a bit of fun, do a bit of creative stuff as well.

Reena: [2:50]

And you’re an amazing mum – just to add that in. Because that’s a full-time job.

Dr Sayani:

I think that should have gone first, shouldn’t it? It’s so bad – we never introduce the key things to us. Yeah, I’ve got a little boy, who’s not so little. He is now twelve. He’s fabulous and brilliant and probably the reason why we do all these things. Isn’t it really?

Reena:

Totally. Thank you. And so why? Why autism? What is it about autism that interests you?

Dr Sayani: [3:18]

So that is a very good question and it has become my intense interest, I think, over the last ten years. I think what fascinates me about it and what first brought me to autism when I was learning as a junior doctor, is that it was so misunderstood. The term that used to be used about autism is that it’s an enigma, literally. People don’t really understand the condition and that fascinated me. So as a junior doctor, the way you tend to interact with children and young people who have autism, is that you will meet them maybe on the wards or in a clinic. And often that interaction can be quite a challenging space. Because sometimes you’re the person who’s going to take their blood or you’re the person who’s gone to examine them. And this is a child that really is challenged with communicating with you, how they’re feeling. And I think that was the bit that I was a bit like, ‘well, if I don’t know how to communicate with this little person, I can’t do my job’. And so it became my real interest, you know, to kind of work out what is this thing: what is autism? Why does it present the way it does? And yeah, and try to kind of be better at explaining it to families, but also be better at interacting with the children that I meet because it is super, super common and probably more common than we first realised, as you know. 

I think when they first started thinking about autism, if you look at the history of autism, when we were sort of considering it as a condition – so Leo Kanner and Asperger and all these people – some eighty years ago now, when we were thinking about it then, we thought it was a really rare condition. And what we understand now is probably that actually there’s been lots of people around on the autism spectrum for hundreds and hundreds of years, but we haven’t diagnosed them or it’s been misdiagnosed as other things: as learning disability, as mental health issues. Particularly if you look at autism in women, that’s a really interesting case because I think they have been notoriously misdiagnosed and so it really is an enigma, and it’s about us learning from the people who are managing their way through the world with the condition, what this means.

And I think the medical community is still learning and we’ve made mistakes. You know, I think there was a very medical model, a very kind of pathological model of autism. We’ve discussed this before and I think my curiosity is I want us to learn more, to move away from that model and to serve the children and young people and families that we work with better. So I think that’s my ‘why’.

Reena: [6:02]

It’s a very powerful ‘why’. That’s amazing. I’m just conscious, I suppose there might be some parent listeners who may have some misconceptions about what autism is. And I think there’s now been a huge shift in understanding that autism is not linear. But you know, that it’s actually quite damaging to have labels such as ‘high functioning’ and ‘low functioning’ and that people are just so static – and actually in life nobody is ever just static. So, it’s even more damaging to try to put that sort of label on an autistic person. But we now see it more as a spectrum through which people might even fluctuate on a day-to-day basis, depending on the environment and what’s going on in their life. As a parent who might be listening and who might be wondering ‘okay, what is it?’ How would you in really simple terms, explain it?

Dr Sayani: [6:56]

Yep sure, as best I can, because definitions have changed, I think. So, we classify autism as a developmental condition. So, what that means is there’s something about the wiring of the developing brain that’s a bit different to the neurotypical population. And I always say that it’s just about diversity. So in the same way that I have rather curly hair, someone else will have straight hair. I have this coloured skin, someone else will have another colour – eyes, all of those things – we vary as human beings, and in the same way, our brains are wired differently. But what’s interesting about autism is that you get a kind of specific pattern of wiring that we can almost classify this as a group of people. They all present differently; it’s very infamous that every autistic person will present completely differently, because whatever’s happening in the wiring of their brain is also integrating with who they are as a personality. That’s the wonderful unique person that comes out at the end. 

The kind of characteristics that we’re looking for, is there will be difficulties in the way that they communicate, but in particular in the way that they communicate socially.  So, when we talk about communication, the first thing you think about is language, and some people on the spectrum will have difficulties with speech. They may even have speech delay. Some may never get to a point where they have fully articulate sentences speech, some will stay at one word, some will be non-verbal and some will be able to do conversational interaction. That’s the interesting thing. That’s why it’s the spectrum. But it’s not just the fact that you’re using language, and that might be a challenge, but it’s also about how you communicate with somebody else. So, you and I, even if we spoke different languages, if we came from different countries and spoke different languages, we’d probably be able to communicate because we’d use what we call non-verbal communication. So I’d use eye contact. I might use some gesture. I’m a bit of a gesturer. I might use that quite a lot to help you understand what I’m trying to say. You know, I’ll try and convince you by looking a bit more intensely and then look away if it’s a bit too much. And that is all part of what we call non-verbal communication and part of that sort of social interaction, and that can be a challenge in autism. That’s the bit that’s hard. You know, we talk about how eye contact can be a real challenge and how to do that in a natural way. It just doesn’t come quite naturally to people on the spectrum. 

And then the other thing is how you then not just communicate, but make relationships. So can you make those friendships, you know, are you interested in it? Some people on the spectrum are just not interested necessarily in connecting with people, and that’s okay. But the problem is, the world is a social world where the expectation is – particularly for children – that you make friends, that you are able to talk to your teachers and that you learn through friendship and play. And if that doesn’t come naturally to you, that can be a real challenge. 

So it’s sort of social communication, relationships, and then it’s these other little bits we call the ‘B’ symptoms. So, it’s things like being really intensely interested in subjects, becoming so focused – almost that hyper-focus or that mono-focus that you can’t think of anything else. And it’s all you can talk about, and you want to tell everybody all the facts about it because it’s so fascinating to you. And I think that’s one of the symptoms. But what’s fascinating about these symptoms is if you look in the neurotypical population, you’ll find it too. As I just said to you, my intense interest has been autism over the last ten years. 

And that’s the point really, that you will see these in the neurotypical population. But when they concentrate in one person and they start to impact on how they function, then that’s the challenge. Like if you’re so intensely interested in something that you can’t learn, you can’t go into other subjects because you’re just thinking about that subject. That’s when it’s a problem. So intense interest. And then there’s what we call repetitive movements or repetitive speech. So, some children will echo speech. Some children are great mimics. They can learn the whole of a script from something off the telly or YouTube. But then again, it becomes something that is so intense for them, they can’t learn other things and they can’t function in the world. Sometimes it’s about repetitive movements, you know, rocking or spinning or tiptoeing or whatever it might be. 

And then there’s also the sensory symptoms, which have become really quite a big part of the autism spectrum now, I suppose, which we didn’t really count before. But the way that you sense the world is kind of different, so light coming into your eyes may feel different. Sound can be really intense for you compared to somebody else. Smells can be really intense, or you might not feel a sensation at all. So you might be really insusceptible to pain. Or when it’s cold, you want to wear a t-shirt even though it’s 5 degrees outside. So there’s all these things about the wiring, but we seem to see this pattern in the spectrum. So I think that’s a very long answer, but I think that’s how I would describe autism. Does that make sense to you Reena?

Reena: [12:02]

Oh completely, yeah. I mean, I could just see Evy through most of those examples, the whole friendship thing. The friendships remain a challenge, but he just wasn’t interested. Unless – someone could play next to him, and that’s okay as long as they don’t touch any of his stuff and don’t talk to him, then that was as much as he would tolerate as a friend for a very long time. It’s only now, he’s now nine, and we’re starting to get into that space of friendships and the sensory thing. I mean, he walked in the bathroom at the weekend and he said ‘It smells different. I don’t like it’. I had changed the diffuser and yeah, he’s just like: ‘It’s awful’.

Dr Sayani:

Because he’s got such a good sense of smell.

Reena:

Yeah, totally heightened. And noise, you know – he hears everything. I can’t even talk about him in the next room. He can hear everything.

Reena: [12:55]

So something that was very interesting – and this data is very old, from the National Autistic Society – it’s about 10 years old. When they undertook their ‘Diverse perspectives’ study, one of the points that they raised in there was that people from Black, Asian and minority ethnic backgrounds were less likely to get an autism diagnosis for their children, and also less likely to seek appropriate support. 

They’d also said that as of 2012, Asian pupils made up around half of the autistic population and there hasn’t been a significant amount of research done since then, so it would be very interesting to know what later data shows, although I know the Autism Research Centre in Cambridge has said that whereas before there was a perception that autism wasn’t that prevalent, we’re now looking at 1-in-57 children being on the autistic spectrum, which approximates 1.76% of the population. So, we’re talking about a pretty significant number. 

They have also commented on the fact that there are more variations in ethnic minority communities, and more research specifically on that needs to be undertaken. I’m really interested to hear from you what you think about that, and also from your lived experience through your practice in the NHS and privately: what do you see as some of the barriers that might prevent parents seeking an autism diagnosis for their child?

Dr Sayani: [14:29]

Really good question and all of this feels really familiar to be honest. So, one of the things we do in the NHS – and we needed to – I work in a borough called Newham, it is in the east of London. It’s really diverse. About a quarter of our population on our waiting list registers themselves as Asian Bangladeshi, and then within that there’s different dialects like Sylheti speaking, Bangladeshi etc. So that’s just a quarter and then we’ve got so many other Asian Pakistani groups, Indian groups, other ethnic minorities, lots of different Black African populations – so it’s quite a diverse borough. What we have had to do in Newham is actually create a clinic to help families with the diagnosis. 

So there are some families who when they go through the diagnostic process – and they’re often from ethnic minority backgrounds – find it challenging to accept that diagnosis. They will come along the process, they’ll do the process, they’ll sign up to it, and then they get to the point of the diagnosis. And they’re like, ‘I don’t know’. And so I tend to meet them to just hear their perspective. I mean, the first thing I would say is you can’t force a diagnosis on anyone, right? 

So the guidelines in the United Kingdom – we call that the NICE guidelines for us –essentially say that to make a diagnosis of autism you do all your assessments, but you’ve got to do it in collaboration with the parents and carers, because that’s the people who are with that child every single day and understand them. And also, those are the people who are going to take that child forward with that diagnosis and help them navigate the world, right. So it has to be that collaboration. 

But when you talk to families, they will often talk about stigma. You know, they will talk about, ‘Yes, but if my child gets this diagnosis, what will my family think? What will my community think?’ You know, ‘Will they be treated differently?’ There’s a lot of misperceptions – this is all anecdotal, but families talk about mothers getting blamed – ‘Your child is autistic because there’s something wrong with you’. Which is horrendous, because actually, first of all, there isn’t something wrong with the child when they have autism in the first place. It’s just another way of thinking and being. But also that’s completely untrue. We know that these are just traits that we see in the population that are probably filtered through millions of genes, and then end up in a child. They’re not because of one thing or another. And so I think that can be really challenging. 

But, you know, families have said things to me like ‘Will my other daughter get married if my community knows that my first child has autism, because I’m worried that it’s going to add that stigma’, you know, or just not being believed. ‘No, that’s rubbish. It doesn’t exist’. Or, there’s been some studies with British Somali communities where they’ve talked about actually, they believe that autism is a western disease, because there was nobody diagnosing it back home. So it must be something to do with being in this rainy, grey country. Maybe it’s that we don’t get enough sun. And actually, those are reasonable things to think if it’s not part of your paradigm, your norm – you’ve not heard of these things before. And what you have heard can sadly be really stigmatising. And then there are words that we use – the hardest word that I hear sometimes is ‘paagal’. These words associated with madness or craziness. Even when we use interpreters, actually, during clinics, we’re very clear that the terms need to be neuro-affirmative, so that we’re not reinforcing any stigma or biases. 

But these tend to be the challenges, so I can imagine people won’t come forward. When they do come forward, they’re not really sure if they want to take on that diagnosis. And then the next step of going out into their own communities and talking about it can be very hard, and they can be very isolated and they can feel like, well, no one else is like this. I can’t go to my mosque or my gurudwara or my temple or whatever it might be, because everyone will see me and everyone will know that my child has this diagnosis, and then I will be shunned or I will be blamed – so it’s very challenging.

But I think that the point you made about ‘there needs to be more research’ – there definitely needs to be more research and it’s what we’re looking at. So at the moment we’ve got this project going on looking at a digital tool for autism diagnosis. But what’s great is because it’s based in Newham, we’re thinking about how can that apply to our ethnic population, particularly for example our Bangladeshi population which is a large proportion. So that’s great, and the future research which I’d love to do and I’m looking at doing at the moment, is to hear the stories of families who’ve come from different communities – from our South Asian communities – and hear how they understand autism. Because some of the things that are named autism by diagnostic criteria – eye contact, this, that and the other – are not seen that way through the lens of their linguistic and cultural background. They see it differently. And what I worry about, is that as a doctor, you’re almost becoming like an imperialist western kind of power and saying, ‘Well, this is the diagnosis your child has’. You know, ‘This is the criteria that I’ve used. This is what you have to accept’. That doesn’t feel right to me either because of that whole thing of co-collaborating in understanding where families are coming from. I don’t know if that’s answered your question, but that I think are the barriers and that we do need to do more research. There’s no question about it.

Reena: [20:17]

No, absolutely, it does. And it reminds me, actually, there was a really interesting white paper that was released not too long ago that I contributed to, and it looked at autism presentation in girls. And what was really interesting was that in some communities an autism diagnosis was okay for their daughter, but not okay for their son, because in that particular family dynamic for the son to have it could potentially have negative ramifications in the future. Whereas it was OK for the daughter to have it. Whereas in other communities – and these are all South Asian communities – it was okay for the son to have it because then they throw all the support behind that child to get whatever they needed to do for that child, so to empower him to be the best he could be. But they didn’t want it for their daughter because they were worried about, as you mentioned, marriage prospects and things along that sort of narrative. Do you see that difference in boys and girls and acceptance in your practice?

Dr Sayani:

Yeah, there’s definitely a different way of looking at it, whether it’s a boy or a girl. I mean, first of all, historically autism has been diagnosed more in boys. And we believed as a medical community, it’s because it was more preponderant in boys. It was just more common in boys. But the reality is, if you look as you go up the age groups, the girls start being diagnosed more. So probably what’s actually happening is that girls do something we call masking or camouflaging. 

So in the early years they managed to get round the social issue. They mimic other children. They watch really closely how to be social. And they learn that probably because that’s a cultural thing too, because it’s an expectation of girls to know those things. And then as they get older and the social demands get more, then it might be revealed. I mean that’s just generally, but I think definitely in populations they will see things differently depending on whether it’s a boy or a girl. Sometimes the boy is their pride and joy, and kind of the marker of their family and community and the person who’s going to pass on who their family is, and if that boy – and especially if they’re the only boy – has autism, that can be a challenge. 

Equally, sometimes diagnosing autism in the girls is harder because if you say, ‘Well, your daughter doesn’t really engage with social interaction and she doesn’t like looking at people’ – I remember one family telling me, I was describing her eye contact and I said, ‘You know, I think she’s finding it really hard to give eye contact. Can you can see the way she looks down when we talk, even though she’s talking lots, but she’s not looking’. And they said, ‘No, no, no, that’s not eye contact. She’s just shy. She’s just coy you know’, in that almost Bollywood-esque kind of way in which women will look down and away. They had interpreted it that way. And ‘She doesn’t want to make lots of friends, that’s okay’. You know that for them, that isn’t that important. She needs to be this sort of quiet girl and that’s a good thing. ‘What’s wrong with that?’. I think that the lens through which they’re seeing it for the girl or the boy makes a determination as to how they’re going to accept that diagnosis and take it forward.

Reena: [23:44]

Yeah, yeah. It’s so interesting, isn’t it? It was really interesting the point you made about the whole kind of ‘Here’s your diagnosis’ from a kind of white imperialistic perspective. And I’m conscious that when I was going through all of the different appointments with Evy there was no representation. I saw no doctors or professionals from a Black, Asian or minority ethnic background. And I can only imagine that it must be hugely empowering for the people of Newham whom you’re serving to see and receive this kind of message and diagnosis from someone who looks a bit like them. What’s your perspective on representation in healthcare in this sort of space?

Dr Sayani: [24:27]

Interestingly, the NHS is probably one of the most culturally diverse organisations in the world, I think. We have brought all sorts of people of all colours and shapes and sizes from all the parts of the world, and that’s fantastic. So I think if you walk into your regular hospital or your clinic, you will see people who look like you, you will find people who look like you. But I think what you’re talking about is that representation when you’re in that kind of diagnostic space or in the therapeutic space, and I didn’t really realise how important it was. But I think it comes out when you have the opportunity to be able to be at the same level as the families who are coming to you – you understand them and they understand you. 

In medicine before, it was very much the old-fashioned way of doing things, you’re a bit in your ivory tower and you’re a bit distant from the patient and there’s a kind of almost power relationship between you, and then you keep your distance. You’re not too familiar with them, and there’s all of that. But you see, the problem with that is that there isn’t compassion, but if you don’t come to the level of your patient and really understand who they are, then there isn’t compassion. And I think the things that I do  – and it’s not miraculous things – but the things that I do and some of my colleagues do who are also from ethnic minority backgrounds – is we can say, ‘I know that back home people haven’t heard of this’, or ‘I know within my own family, people would not know of this’. And suddenly that brings a bit of ease into the situation. 

Or just being able to – my Bangla is not brilliant, but I can pick up a few words. So even when we’re having a consultation, sometimes I know what that family is going through and I can see, I can hear the words that they’re saying and I can stop it and say ‘Hang on, let’s talk about this’. And actually, that’s a really valuable thing. That’s something that’s a little bit of magic that you can add because we understand each other, because we’re on the same level. I think that helps because there is a distance, there can be a distance when you don’t see someone who looks like you, when it feels they won’t understand you. I completely get that. 

And I think we need to encourage more people from BAME groups. I keep saying ‘ethnic minority’, I should say ‘global majority’. We should be encouraging them to come into this space so that there is comfort for families and for children, and even for adults, for autistic adults, to be able to connect with people that understand them. I think that’s what it’s about, isn’t it? It’s just about that being human and understanding each other.

Reena: [27:12]

Absolutely, absolutely. I mean is there anything that comes to mind – I guess to kind of follow on from that point – from a healthcare perspective, what more practitioners could do? Obviously, they can’t change their colour, but what could they do in order to get into that space where they can understand their patients better?

Dr Sayani: [27:38]

That’s such a good question. I think the first thing lies in what I talked about before, which is moving away from medical models of autism. You know, we still – in the criteria that we use for diagnosis, so we use this diagnostic manual and we call it the DSM 5 criteria – we still use the word disorder, for a start. Yeah, it’s not a disorder. It’s just a way of being. It’s not something wrong with you as such. I think that’s the thing – we need to shift from a very pathologising way of thinking to a more neuro-affirmative way of thinking, so that families don’t feel as soon as they come in the room that you are othering them before you’ve even begun. 

And I think another part of that is what I talked about before: traits of autism you find throughout the population. You know, in almost every consultation I do, I will say to families ‘And, I don’t enjoy eye contact much, and sometimes if I’ve had a social event, I get really exhausted and the next day I just want to be on my own’. And by saying that, we’re saying, ‘Well, actually these traits are just part of being human’. And here I am, another human with the same traits, but it’s just in the intertwining of the complexity. Your child has the condition, but that doesn’t make us different. And you will find that there are definitely more autistic traits in doctors and psychologists anyway. There’s good studies to show that. So if we know that already, why are we not sharing that? Why are we keeping ourselves distant from our patients? So I think that’s what would help: neuro-affirmative language, you know, making families feel that we’re on the journey with them, not just putting something on them. Yeah, I think that would make the difference.

Reena: [29:30]

I think that’s hugely powerful. Especially as an Indian woman having been brought up to see doctors in the ivory tower – to feel that a doctor was almost meeting me eye to eye and treating me with that compassion – especially at the beginning when it was so hard to process what was going on and to talk about it. If you at least feel that the professionals are with you on that journey, it can be very heartening, because there’s a fine line between accepting it and embracing life and moving on, and going the other way. So, yeah, I think that’s hugely helpful. And I guess, you know, it occurs to me that there may be some parents listening who don’t have a diagnosis, but maybe have a suspicion as to whether or not their child might be autistic. What should those parents do? Where should they go? What should they ask for, in your opinion?

Dr Sayani: [30: 29]

It’s a really good question. I think it depends on the child’s age as to where to go next. Children particularly who have non-verbal or limited-verbal autism often present earlier – and so you’re thinking about sort of nursery age. So, what I would recommend is that it’s good to get as much information as possible from all the people around you. So the nursery is a really good stop to say, ‘I’m concerned about this. Are you guys concerned?’ and particularly ‘How is my child interacting with other children?’ Because sometimes – particularly if you don’t have siblings – you won’t really know what that deal is, so go into a nursery environment and ask them. And often nurseries and schools are trained in autism and recognition. So you can have those conversations. Don’t be afraid to just say ‘Something doesn’t quite feel right here. What do you think?’. I would say that’s really important. 

Then other sources of help. Your health visitor is actually really important. They often come to do a two-year check, and sometimes that’s when they can pick things up. So, it’s another resource that you can go and talk and say ‘Does this feel right compared to other children, does this look OK?’.  So that’s to evaluate. And then you have your children’s centres as well, which often have brilliant resources to support children’s interaction and development and play. So, these are places you can go when you’re not quite sure and you just want that chat. 

But if you are concerned and you actually want that referral then your GP is definitely the place to go. The challenge with the GP is that obviously they have a very short consultation, and most NHS trusts will need more information in order to accept a diagnosis. So actually, sometimes it’s better if your nursery or school makes the referral, or – depending on which area you live, if they’re not allowed to make the referral directly – sending a report from nursery or school with the GP referral is very powerful. Certainly in our trust, children who are school age, we won’t accept a referral without a school report. So getting information from everyone is really good, if you want to go down the route of ‘I think we need a diagnosis’. 

Second thing I would say is that if you think about who can support you, and some people go into the private sphere to get support. I think in the early years in particular, speech therapists and occupational therapists with specialisms in autism. It’s really important, because speech therapists do a lot of work. Some of them just work on speech only; some of them work on feeding. So it’s really important to go to a speech therapist who has some specialty understanding of autism and they can support. Equally occupational therapy as well. So if you’re going into the private space, because the NHS space is taking a long time, these are often places that you can go to get support. And I suppose that’s the key thing. 

And then I would say Google is a dangerous place. So my favourite is the National Autistic Society website. It’s full of videos, there’s lots of different things, there’s even bits in different languages. I just think it’s a good place to start if you’re not really sure, you don’t really understand what’s going on. I don’t know how you feel, Reena, but I think there’s so many sorts of resources out there, but I think the National Autistic Society is reliable, so that’s a good place to start that. Do you think that would help families?

Reena: [33:51]

Absolutely, absolutely. When you were talking it reminded me of when I went to the GP. I’d been told by a friend – I had a friend who was a special educational needs teacher – I said, ‘Oh, I think he (Evy) might be autistic, but I’m not sure. I’m not even sure what autism is. What do you think?’ And he said, ‘Yeah, actually possibly. Go to the GP’, and I went to the GP and the GP said, ‘Oh, don’t be ridiculous. He doesn’t look autistic to me. Half of my medical school were autistic’, and sent me out. And I just left. 

Yeah, I look back and I’m like ‘Oh my goodness’ and I just went. I just was like, ‘Oh okay, great’. I think at that stage as well it was welcome that someone was telling me that my child was okay. So, there was a part of me that despite just being brushed off in a two-and-a-half minute meeting, someone with medical authority just told me my child was not autistic. I’ll take that, you know? But actually, there were some free speech and language therapy sessions in the borough, hosted by one of the children’s centres, that I happened to be available on that date, and I just took Evy along. And they spotted that he had speech delays and speech sound difficulties. And from there they then did the programme of speech therapy and then produced the report and then I started all of that. 

So it’s really interesting that you said all that and that was my experience. Because we haven’t actually talked about what we were going to talk about at all today, but that was exactly it and unless you have something from someone reputable, a GP is just not going to do a referral.

Dr Sayani: [35:41]

The challenge is that, though autism is being better understood now than it ever has been, the message has not necessarily spread to every GP in the land. You know, if you think about it, I feel like I’m educating my team at the moment – and we’re an autism specialist diagnostic team – about neurocognitive sort of ways of looking at autism or the diverse spectrum. You know, even ten years ago, the attitude of doctors working in the area compared to now has changed hugely. So, you’re right, it doesn’t filter down to GPs all the time. Some are good and some will pick it up, others may not. And that’s when you probably need, you know – our partners in education can sometimes be really helpful and powerful and I think children’s centres are brilliant in that way, and we partner a lot with children’s centres. So, there may be other individuals that you need to go to, and take it with a pinch of salt if the GP says ‘Hmm…’ because they don’t have enough time. That’s why autism takes time to assess. It’s because you can’t do it in ten minutes.

Reena: [36: 52]

Thank you. And on a final note, what one thing would you say to any parent listening in, based on your experience and what you’ve seen? What would be your parting message to the parents tuning in today?

Dr Sayani: [37:06]

Okay. So, if you suspect that your child has autism, or even if you have a diagnosis, I think the first thing to remember is autistic children are fabulous children. They’re brilliant, and autistic people make the human population the wonderful, creative, inventive population that it is, and it’s probably what’s brought human beings forward over the last thousands of years. And so if all those traits are causing challenges in your child, that’s nothing to be ashamed of. But what it does mean, is it puts that responsibility on you to help them navigate the social world. That’s the bit. That’s what you need to be able to do – without stigma, because they’re wonderful. You just need to sort of break into their world, and make that connection between their world and the social world. And then a whole bunch of joy comes out. 

I mean, I think the autistic children and young people I’ve met are fabulous, all of them, but they’re struggling because the world is not set up for them. So if you as parents can help them navigate that, just like any parent would do – that’s what we do, isn’t it? We help our children navigate the world – then wow, that’s what’s going to make the biggest difference in their lives. More than any therapist, more than any doctor or psychologist, it’s those parents helping them through, plotting their path, guiding their way.

Reena: [38:40]

Absolutely. I completely agree. I think – I know – I am a better human because of Evy, because I see the world through a completely different lens and it made me question my values, and which beliefs I was prepared to leave behind and which ones I was going to take forward. And I don’t think I would have done that if it wasn’t for him. So I’m eternally grateful. And I tell him that all the time, and he just looks at me like I’m talking nonsense. But yeah, it’s so true. It’s a whole magical world out there and sometimes things which might feel a bit uncomfortable – they become comfortable when we allow ourselves to just step into a new space. 

Doctor Sayani, you have been incredible. Thank you so much for your time today and sharing your wisdom and your experience. And I hope that parents listening in will feel heartened to know that there are incredible doctors like you out there, ready and willing to support their children on their journeys and helping the parents to enter their world as well.

Dr Sayani:

Thank you so much. Thanks, Reena.