← AuDHD and Then Some- Hosted by Ellie AuDHD
AuDHD and Then Some- Hosted by Ellie AuDHD
Early Intervention Matters: Spotting ADHD & Autism with Dr. Inyang Takon
00:53:58
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- [00:02]
A
Perfect. Hi everyone and welcome back to Audihd and then some. Today I'm joined by someone whose work has been making a real difference to neurodivergent children and their families. Dr. Inyang Takon is a consultant neurodevelopmental pediatrician with over 30 years of clinical experience across both the UK and in some parts of Africa. She specializes in AUDHD, autism, developmental delay, Tourette syndrome, epilepsy, fetal alcohol syndrome, also known as FAS and spectrum disorder and other neurodevelopmental conditions. She's also the co founder of School Doctor a social enterprise helping families navigate assessments and support. And she's the host of the Early Intervention Matters podcast where she shares practical evidence based advice for parents and other professionals. One of the things I was particularly interested in in Dr. Takon's passion for improving understanding of neurodiversity within minorities and African communities where stigma and barriers to diagnosis can often delay children getting the support they need. So today we're going to be talking about early intervention, recognising the signs of neurodivergence, supporting families and what parents can do if they think something doesn't feel quite right with their child. Dr. Takon, thank you so much for joining me.
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B
Oh, thank you so much, Ellie. Thank you.
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A
It was so nice because you've achieved so much.
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B
Thank you. I think when you say it like that you think, oh, that's a bit overwork. But it's been fun doing it. So I haven't really seen it as work.
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A
I'm so glad. And you've done life at the same time as well.
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B
I've done life, raised children to add young adults as well. So yeah, it's been full on, but I, it's been a rich experience, it's been a journey. Yeah, it is perfect. Yeah.
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A
Can you tell us a little bit about yourself?
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B
So, so I'm Dr. Young Takon, as you might mentioned. So I spent, I've spent about three decades now doing pediatrics and when I started pediatrics I started doing that in, in Africa, in Nigeria where I did my primary medical degree. So after my primary medical degree we have to then specialize in a subspecialty and I love pediatrics from the get go when I was at medical school. I love children because I felt just children where, you know, you could readily engage with them but also even a non verbal child could communicate things to you even when they couldn't speak in words. So I liked observing, I liked those nuances where they couldn't even talk but they could communicate their needs and to you. So I, I actually love pediatrics from very early on. So I then went on to specialize in pediatrics. And initially when I did that, I was doing general pediatrics. I became interested in neurology. But when I, in the course of doing that, I wanted to know more about children. So when you work in the hospital, you know, you see children who are unwell, and when they leave, you don't know really what goes on after that. So once you've discharged them, you. You don't follow them off. So I never really knew what happened to some of the sickest children that came in when they were discharged. And I just used to wonder, you know, whatever came of them. So that's what led me to actually becoming more interested in neurodevelopmental pediatrics. And. And yeah, so I then, because I was seeing lots of sick children from prematurity, sepsis, you know, children who were really unwell, but when they became discharge them. But you never knew what happened.
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A
That would, that would, that would upset me. Because you become sort of close to the child.
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B
Exactly.
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A
You care about their welfare more than anything. And then you wave them goodbye and
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B
you don't see them again.
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A
And so I complete. I get attached to people. So I completely understand that.
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B
Yeah.
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A
What has kept you passionate about this work for more than 30 years? It's a long time to be passionate about something.
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B
Well, I think what's made me passionate is the fact that you become part of a child and family's journey. So I've seen children where things were really down and out at the beginning. The families were, you know, completely not confused and not knowing what to do. It's almost as if children future were written up at the time that, you know, they were going through that initial crisis process, but being able to work with them. And I've seen lots and lots of children who have achieved so much, you know, gone on to live independent lives, who have done excellently well. And that's when I, you know, I became passionate because I was not only seeing a child from a little aspect, but I was becoming part of that child's journey to actually help to change a child's life and trajectory. So that's what kept me passionate because I see when I see a child or a family in a crisis, but I just feel there's something that can be done in terms of finding the right diagnosis, supporting the child, being an advocate for the child and the family, because it's not just giving the diagnosis, it's actually ens that the support systems are there to help the child. And sometimes the families are so down during this period that they actually need somebody to step in and help them during that journey. And that's been one of the greatest things I've found really useful that I've advocated for children and they've been able to get the support and then to see them come out the other side, you know, it always makes me cry when I see them becoming young adults who are doing really well, who've gotten great skills at doing things and they're happy. I look at the beginning and I look at where they are now, and it's just been an incredible journey and, and something to be part of. So that's kept me really passionate because I don't see any write off in any child. I always feel there's amazing.
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A
Do you think that's why early, you know, early intervention matters so much? Because it's a whole journey? You know, I was diagnosed as an adult and my children are in their 20s now. But the only reason I think I was diagnosed was because people kept approaching me like teachers and stuff and saying, your child is showing signs of autism. And, you know, I'm from a culture as well where that was like, whoa, you know, I'm not sure if that's a good thing to say to someone. I was offended when my people, when people kept coming up to me like teachers and doctors and saying, I think your child's autistic, I thought that that was not the right thing to say to people. And then, and ashamedly now, you know, I found out myself the autism came from me and, you know, the ADHD come from me. But, but I had a later diagnosis. So I've been on a completely different journey to my children. Do you think early intervention makes so much difference?
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B
I think it makes so much difference because when you look at some children and the challenges they've gone through before they've gotten that diagnosis, it could be the school not understanding them, them being considered as naughty, other children, you know, not, you know, interacting with them well, or sometimes being unkind to them. The child being isolated and other, you know, traumatic.
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A
So many things I, I've had for 40 years of just feeling like, what's wrong with me. So if I would have known from when I was a child, it would have, it wouldn't have changed everything, but it would have lessened a lot of trauma and it gave me validation and taught my parents how to deal with me. So 100. I agree.
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B
Yeah. And again, it prevents the Child trying to be somebody they're not. You know, the child having to try to fit in with everybody. We don't want people to try and fit in. We want people to be themselves, but we want the environment around them to understand. So again, it can be very tiring and exhausting for children having to be who they're not, you know, and that puts a lot of pressure on them and anxiety.
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A
I wish I knew at school because I feel like. And now I kind of have an epiphany moment. And I feel like all the time at school I was being taught by a fish in a class full of fish. How to be a fish.
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B
Yeah.
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A
And I was constantly being criticized and criticizing myself, why can't I be a fish? Why can't I swim? And beating myself up about it. But I now realize that I was never a fish, and that's why I couldn't do that. And there's nothing wrong with that. But I wish, I wish somebody had told me sooner because it would have prevented a lot of heartache for myself. So I do think it's early intervention matters. We hear the phrase early intervention all the time, but what does it actually mean and why can it make such a difference for children?
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B
Thank you. Thank you, Ellie. Early intervention. Yes. And I understand, you know, there's a lot of ol intervention, but we need it to be quite specific because when we're talking about neurodevelopmental differences, it's the different, you know, when you pick up, say, early, where a child's difficulties with communication and, you know, interaction or attention, when you pick that up early, you can immediately, you know, get going with using the appropriate strategies for the child. Yeah, you, everybody can key into giving the child the tools and the support to, to make that child achieve their best.
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A
Yeah. If you've got the strategy, that's, that's the thing I wish now I'm so passionate about giving people the language, the strategies, and the toolbox because that has so much power. So the earlier you can start, the better. I get that completely.
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B
Yeah. And you know what happens if you don't do that? So that child gradually develops low self esteem because they feel I am not doing as well as everybody else. And then that low self esteem builds up into more anxiety. And then you get to the point of school refusal. And then you get to the point that there is challenging behavior at home. Parents can't understand why the child is having meltdowns or this. It's all the pressures from having to be somebody where they haven't been given the tools. You know, it's just like us walking around if you need glasses and you're not given glasses.
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A
Yeah.
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B
You know, and you're told just look at the board, you know.
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A
Yeah. And you can only take in half the work. And you know, in later life that led me that, that low self esteem led me into abusive relationships.
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B
Yes.
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A
Self medicating with, you know, with drugs in my later days.
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B
Yeah.
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It caught, it had a bang on effect on, on so many things. So that's why think it's so many, so important.
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B
Yeah.
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A
What should parents be looking out for specifically in. In neurodivergence? Because I know that you are, you wouldn't. You're in so many fields, you're invested in, you know, fetal alcohol syndrome and etc. But specifically in neurodivergence, what should parents be looking out for in the beginning?
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B
So we always say that as a parent, you know your child very well and you're the expert on your child. So you've been seeing your child from day one when they've been born. But there are things that, if you think your child say, for example, if your child is supposed to be saying words at a certain stage and hasn't started speaking, or you notice that your child has particular patterns of behavior where they want to do certain things all the time and they're not open to entertaining other things, or you're taking your child somewhere and they suddenly start having a big meltdown. When you're approaching that place, you might not have realized that that might be due to either sensory issues or some other things, but you just notice that actually every time we're going to this place or the supermarket or this place, she just has a meltdown. You can't, you can't sit in restaurants, you can't go to regular places that other children should be going to. And you notice that maybe when you have Gu in the house, the child becomes very upset, not keen on playing with other children. So there are different things. She might want to sit and play the same game and not be open to other people coming to share that game. Or if another child wants to play, might not really be interested or the child wants you to do the same thing, you know, every night. Some parents might notice if I don't read that poem to them, they won't, you know, go to sleep. You notice that your child is highly dependent on certain routines, you know, and, and they have to have certain things or even clothings. They might be particular about the clothings or the type of clothing or food.
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A
Food was a massive one for my children. And clothing. They couldn't wear jeans or one of them specifically couldn't wear jeans because it would irritate them. And the thing is with me is I thought that it was all normal behavior because it was something that I'd experienced. So as a neuro, you know, I didn't know I was neurodivergent at the time, but I just thought it wasn't a big deal because this was something I experienced and my parents thought it wasn't a big deal because I was just like my dad. Awkward. Socially awkward.
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B
Yeah.
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A
You know, I think some parents don't pick up on it because they are neurodivergent themselves.
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B
Themselves. Absolutely. And that happens quite a lot in clinical settings where it's only after we finish the child's diagnostic assessment that the parent would say, actually, you know, everything you've been saying just sounds like me.
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A
Yeah.
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B
And sounds. And it's at that time that parents have been able to pick up on the fact that they might be neurodivergent themselves. And many parents have gone on for assessments and been given a diagnosis.
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A
I think it's a pandemic that's happening. I think that's why in my job, I'm seeing so many late diagnoses. And I think a lot of it I've noticed a pattern in. It's because their children are getting diagnosed and they're seeking validation for themselves.
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B
Yeah.
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A
So 100%, I agree with that. How can parents tell the difference between typical childhood behavior and something that may warrant an assessment?
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B
Okay, so what you would find, what we usually say to parents is watch out the patterns of those behaviors, because usual behaviors, you know, if it's just a momentary behavioral disruption, it's sometimes usually due to maybe you're asking them to do something and other child wants to have their way and they don't have it or, you know, things like that. But it's not. It just happens sporadically now with differences, you know, neurodiversity, you will notice a consistent pattern. So if you start watching, you will notice that you will notice that consistent pattern of that behavior usually happening at set times or set places. So you might notice that if the child is on their own and, you know, at home, they might be fine. You won't notice anything. But the minute that you are taking that child out to a particular place, then you're noticing that, and so you begin to build a pattern.
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A
I think it's so helpful, especially as me, because you know I'm ADHD as well. And so I, I, it was awful for me to get my children through assess assessments because asking an ADHD person to fill out forms for free children and remembering. So I, I just, to be honest, the only one I helped was the one that presented with the worst issues because I couldn't have the capacities to help three different children. Yeah. And so unfortunately a few of them didn't get diagnosis until they was older. But I found the thing that I would do was it become easier when I started to write things down. Even if it's in the notes on your phone, even if you record them, you know, if writing isn't for, and you have to voice speak them into WhatsApp or voice notes, keep noticing them patterns, keep writing them down that way. It seems silly at first, but when you look back it will help the situation a lot more.
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B
Yeah. I actually did a short video for families on what is helpful for them when they're going for a neurodevelopmental assessment. Yeah. And I did that short video and it was, it was something that I feel that parents would need to have because it can be quite overwhelming when you think on the spot, if you go to the clinic and the family comes on the spot and then you
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A
go home and you think, yeah, yeah,
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B
why didn't I say this, this, this and this.
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A
And especially if you're a neurodivergent parent, which chances are you might be you forget it all in, in that moment.
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B
Exactly, exactly. So I tell parents, please write these things down.
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A
Yeah.
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B
Because you will need them. You will, you will absolutely need these things. So I do say to parents, please write them down.
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A
And nothing you write down can be silly. You know, you might think, oh, I'm writing down this thing and this seems stupid, but honestly, anything can be connected. They ask you the most unusual questions, so you can never be too prepared. Write down anything that you want. You know, no proper assessor is going to look at you and think, oh my God, why did she write that down? Yeah. The more information that you give them, the better than they're going to be.
- [19:08]
B
I mean, I always find really helpful when families who've come to my clinic quite prepared and they've written everything down and they, you know, I usually say to them, this is so, so helpful because, you know, I know how overwhelming it can be when you're put on the for.
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A
Yeah.
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B
And being asked question. I mean, I can't even remember my children's birth weights and stuff.
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A
No, I can't remember Any of them.
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B
So I always say to them, you know, I can't remember this, so it would be pointless anyone asking me, yes, that so but if I had written it down, you know, it is, it is. And parents should not beat themselves up for not remembering, you know, we carried so much already. I tell people that parenting is hard work. You're having to store so much information for your children on a daily basis. I think people don't realize how hard work it is as a parent. So write things down, put things down on paper and then, you know, have it ready when you're going to see your doctor, have things ready when you're going to talk to your teach to the teacher.
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A
And it is overwhelming because the first diagnosis that one of my child, the one that presented the most needy, it was, it was tics and Tourette's. So every time there would be a stressful situation, my child would start a verbal tic which was a scream. So I remember taking the child to the assessment and they, I sat down with all my children around me and specifically this screaming one that screamed every two seconds, this tic. And the doctor would ask me, you know, was it a normal birth, was it a normal delivery? And you know, I had three children, I can't remember and I've got this one screaming and you know, my memory with my executive functions so bad anyway, so, you know, the. I wish that I'd wrote a lot more down. So that's what I always say to everyone. And if you can't write you voice note, even if you take a voice note to your practitioner, they will appreciate it. So, so say I have a child now. Okay, my, my children are grown up but, you know, a lot of people approach me now and say, I have a child. You know, they are 1, 2, 3, 4, 5, they could be 10. And I've noticed they have strong audhd some neurodivergent traits. What's the first step? Where do we go with this?
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B
So in the country it's quite so in the UK where I work, it's quite variable, the pathways.
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A
So we've got right to choose at the moment.
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B
Yes, so you've got right to choose. And. But the local NHS pathways, in most places you go to your gp, but before you go to your GP you need to get some information from school. It's always helpful to get a letter from school saying, you know, this is how Billee presents and these are the contents because that letter would help support the referral being made by the GP to the services. Because what happens when the GP writes to the services? We do something called a triage or an intake and we tend to look at the information that is supported by school information. Unfortunately, because there's such a large volume of referrals being received on a weekly basis, there has to be a way of, like, looking at the ones where people feel there is enough information saying that there are times when school have said there's nothing wrong and there, you know, that happens.
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A
I've heard, I've heard that a lot. And sometimes the child doesn't. Because I know, like the first one of my children, the first couple of years at school, they presented absolutely fine because they were masking the. Out of themselves. And then they would come home from school and, oh, my God, all hell would break you loose.
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B
Yeah.
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A
And that's what a lot of people say to me. You know, my child's not presenting at school, but as soon as they come home, they've masked so hard, they completely melt down and we have a hell of a time at home. Can I throw a curveball and ask you. So my boys went to school, my older children, but my daughter is actually homeschooled. So what happens if I homeschool my child and I don't have that teacher to back me up with evidence when I go to my gp? Is there any other things that I can use?
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B
So you can get information from other people who've known your child? You can get old school reports, you can get old school information. Because the thing is, and we do get this because there are a number of children who are home educated and how do we get information is usually a major issue. But if you can get information from other settings where your child has gone to, or information from, you know, past school reports or things like that, that's helpful. But your child is also going to. If you don't have. It doesn't mean that your child.
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A
But even, like, even a gymnastic class or, you know, if you're Christian, maybe a Sunday school or the mosque or anything like that.
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B
Anything like that. Anything you can think of.
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A
What about from a family member?
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B
Yeah, and sometimes we've had family members writing to support that referral. So any supportive information can come in. The. The child or young person is still going to have an objective assessment. So it's still going to have a comprehensive assessment and people are still going to observe the child and do the, you know, the diagnostic assessments required. But it is important that we get as much as we can. And the thing is, professionals who are observing your Child, during the assessment, are also going to be documenting interactions and things. So, yes, it's not. It's. It's much more difficult then. But we do say please.
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A
But it's not impossible.
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B
It's not impossible, yeah.
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A
So I think assessments are quite overwhelming and a lot of people ask me, you know, what do you expect from the actual assessment? You've gone through the waiting list, you've sat your time on the right to choose or whatever process, you know, whatever country you're in. And then it comes the day for your big assessment that you could have paid thousands of pounds for or you could have got on the nhs, and what are they expecting on that actual day? Do you get an answer? You know, I. I know I've been to assessments, but for anyone else, do you get an answer on the day? Do they send you home with medication? What happens?
- [25:48]
B
No. So you don't tend to get. So you don't tend to get an answer. Depending, Let me say, depending on the type of assessment and depending on the pathway. So I have done assessments where a lot of the work has been going on even before I see the person. So in which case, if I got that information for the referral, I would send out all the screening questionnaires ahead of the time the person comes. And we do that in the NHS as well. We send out as much information before the person comes, so that by the time the child comes, we do the main, you know, interview and diagnostic assessment and examination, that's for adhd, and we look at all the other information we've gotten and we sometimes can make a diagnosis if everything is present, but that's because a lot of the work has been done before this time. Now, if there are times when we've gotten all the information but we don't have enough to conclude a diagnosis, in which case we will send out for more things, we will ask for more information, we will send things out and put the child through for the test and investigations. So we do that. Now, if it is autism, we will still send that information. But autism is much more a multidisciplinary assessment. So there are different parts of the autism. So a standard autism assessment includes a diagnostic interview, in which case the clinician meets the child and the family. Now, the clinician is also observing the child at the same time. They are taking the history from the child and family, they're doing all that at the same time. So they get that information, they process it, and then the child is put forward for an autism diagnostic observation assessment, called an ADOS which is usually with a psychologist, speech and language therapist or sometimes a pediatrician, because the ados is with the child themselves. It has to be done usually on a separate day just with the child, because the clinician doing the ados with the child is taking the child through activities. So a lot of this is like activities, conversations, but the clinician is doing this using a standard process and is observing what it's how that child is communicating socially, asking questions with the, you know, there's some parts will include is the child looking at the exam or the clinician, are they having a conversation or are they just waiting for the person to prompt them each time? So they want to see how they think, what they, you know, how they communicate, how they view each of those activities and those things are scored and then it comes to the questions. But they're parts where they'll be asked questions just to see their perception on things. You know, things about day to day living, friendship, you know, future goals in life and all that. So each one we use modules depending on the age of the child. So for the adolescents and older young people, the module that we use will be different from what we will use for the younger children. And so it's quite structured. So at the end of that we look at all that information from the ADOs, we look at the information from the interview, we also look at information from the school as well and then put everything together, then we look at them against the international standards, you know, the guidelines, the DSM 5 guidelines or the I, International Classification of Disease. There are standards there where a child has to meet certain standards before you give them a diagnosis. And so there are times when, you know, diagnosis has been reached after the assessment and there are times when it hasn't been reached. I actually did a video on when your child hasn't gotten the diagnosis.
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A
Where can we find your videos?
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B
I can also send it to you. Yeah, it's on, on YouTube, but I can send it to you, Ellie. So you can also have it on your site.
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A
Yeah, I'd love to. Yeah, I'd love to link your YouTube or whatever platform that you use most. Definitely, yeah. So after your child's been assessed and you know, you get your answer, you know, with one of, you know, in the early days I didn't want my child to be assessed because I didn't want to pigeonhole them or so, you know, my children were actually, thank God they were very, very clever, like super intelligent, like what they used to call Asperger's. I know it's not that now, but they were super, super intelligent. They overtook my intelligence by the time they were five, you know. Yeah, but. So I never wanted to send them to another school. I always wanted them to go to a mainstream school because I didn't want to pigeonhole them. But actually, thinking back now, it might have been beneficial for them. Parents that don't want to pigeonhole their children and don't want to get them an assessment, what would you say? I know I would personally say, back then I thought it was a bad idea. Now I think it's the best thing you can do for your child because it gives them extra time in exams, it gives them validation. It lets them know that there's nothing wrong with them. It's just their brain is geared a different way. I think it's so important to give your child a diagnosis. I feel like it's a gift. What would you think?
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B
Yeah. Yes. And I think the starting point would be to. And that's why it's so important to provide awareness about these differences and conditions, because I think sometimes it's. Parents don't want the labor because of the way that the stigma or the way society has looked at it. And we. So I spend time explaining to parents that, you know, we are all different in the way we see things and process things and that every child is unique and has a gift. And it's important that children in their different spheres, with their gifts and the way they process things, have that recognition of how they see the world and how they learn so that they don't get frustrated and continue to struggle and,
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A
you know, what toolbox to use with them.
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B
Exactly. Because what happens is if you don't, then your child is spending a good chunk of their lifetime in school and from day to day, it will be hard. It is hard work. And they get exhausted and miserable because they're just not being given the. And you know what it is like in the schools is if people don't have the right classification or, you know, naming of their differences, the support won't follow them.
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A
Yeah. You have to fight for. Even with the diagnosis. Even with the diagnosis. Exactly.
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B
So we see many children, and I've seen this in my clinic. I can tell you this, that this, what you have said has played out a lot of times in my clinic. It's played out a lot of times. I've seen children where. Even from the first school, I've said to the parents, this is what I think it is. And they like, no, I don't want that. And sadly, by the time they have come to that realization, the NHS waiting list, as at 10 years ago, is very different from what it is now. So they're now having to wait four years to actually get something that the child could probably have gotten in a short while. In the meantime, this child has struggled so much. And because what happens is as the child goes up in years, the demands get more. So the demands from year one to year two is going to be more in year five, year six. And when they get to secondary school, so all the defense systems and things that they've been trying to manage, you know, they struggle and that's when the crisis comes in.
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A
So when my children started secondary school, they were super, super intelligent. Within about a year, their grades had dropped. I don't know. Yes, it's now they were like, it's different to how it used to be, A's and B's. But they were predicted like eights and nines, something really crazy high.
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B
Yeah.
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A
And by the time they were two years into secondary school, their grades had gone down to grade two and three, which are quite low.
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B
Yeah.
- [35:07]
A
And because their concentration. And if I had got them diagnosed sooner, and I'm not saying medication is for everyone, if I'd got them diagnosed sooner, they would have had a diagnosis, they would have had the opportunity to have medications help them concentrate and they would have still been up at that high level. But unfortunately, because I dilly dallied in the process, you know, and it happens, you know, they wasn't accessing that medication until year 10. And at year 10, they made, once they went on the medication, they made such an improvement that I thought, oh my God, why didn't I do this years ago? You know, I know medication isn't for everyone.
- [35:44]
B
Yeah.
- [35:44]
A
But at least you have the option once you have the diagnosis.
- [35:47]
B
Absolutely. You're 100% correct. 100% correct. And I think what you've just described is what typically happens, that you see a super bright child who would have done excellently well. And I've had this happen several times to children. I've seen several times where they've been up there in terms of their grades. And because things were not done on time, their grades have slipped. And then it becomes more of an uphill battle for the children to climb up after that.
- [36:24]
A
Yeah, it's true. What do you think about. So a lot of things that I was really interested in as well, and I think you touched upon it earlier, was cultural and stigma. So I live in a very. And my family is very, very Div. Diverse. You know, we have Somalian, Spanish. We have a mix of everything Arab in our family, everything. So, you know, I know how different cultures work, and I'm aware that some cultures find it more hard to accept a diagnosis for their children. I don't know if that's true or not, but should there. Is there a way to make more awareness in different cultures? Because, you know, I'm. I'm. I'm spreading awareness, but I'm spreading awareness in English and, you know, is there a way to spread awareness to all different cultures so we break the stigma? Because I still think even in, you know, in England, there is a stigma when it comes to adhd. When I told people my children are adhd, they'd said, they must be so naughty then. And I said, no, actually, one of them is so strict, they won't break a rule. They always talking about God. They're, like, obsessed with, like, good stuff. Like, honestly, like, one of my children is not a rule breaker ever. So. And they have very bad adhd, so it's a stigma. I can't believe somebody says they honestly. They honestly do think that. And then I've seen naughty children at school that are naughty, and it's obvious they're naughty because they have a bad routine or, you know, something's happening at home. And then the parents say, oh, my child's got ADHD because they're naughty. You know, they blame me, the awe. So I know that we have that. That stigma still in the uk, And I know, you know, a lot of people from Arab communities and I know some Gambian communities as well, and they. They don't want to accept that their children may have adhd. Is this a thing?
- [38:16]
B
Yes. And you've actually touched on something we did yesterday. We did a radio show on.
- [38:20]
A
Oh, good.
- [38:21]
B
Myself and my colleague, we had a radio show on neurodiversity in the black community. Oh, yeah, yeah, we had a radio. Because this is a real problem. It is a big, big, real problem. Yeah. I have seen, despite me being, you know, West African, Nigerian, I have seen so many in my community come in, you know, when the children are even obviously autistic. There have been so many in my community where I'm begging them that please let your child go and have the assessment. And they're saying, Dr. Ako, there's nothing wrong. No, she's gonna talk.
- [38:59]
A
I've seen it so much, and it's so frustrating because you know what? They don't mean it badly because they want the best for their child and they don't want to pigeonhole their child. And yeah, so I understand where it's coming from, but that's why we need to break the stigma that actually neurodivergence isn't a bad thing. It can be a gifted thing.
- [39:19]
B
It is. Yeah, exactly.
- [39:21]
A
But we need to get that information out there and that's why I try and spread it so far and wide. And I've been really interested in exploring that topic with a. With a lot of people. And it's one of the reasons why when I saw your profile and I saw that you had wrote about in the profile was like, yes, because I think that that is something needs to be spoke about. Because I know, you know, as a Muslim in the. Not, not everyone, because I'm not saying everyone is the same. You have different people of different races and nationalities. But in a Muslim community, I know sometimes it can be taboo, you know, when your child has these things. So. And I know in the Gambian community, I know a lot of mums that say, no, I, you know, my child isn't got ADHD or anything. So, you know, I do think it is definitely. What can we do? What can we do?
- [40:06]
B
I think that we can we. I think you're already doing the right thing and I think that we have to break this information into a way that they can relate with and they can communicate. Because, you know, what happens as well is if people go to the hospital and the clinician there is doing business as usual and not really having time to think about people's culture, think about that, then they're just going to do business as usual assessment and just not. And if they say, no, I don't want it, they'll just say, okay, that's fine, you don't want it, then. Do you understand?
- [40:46]
A
Yeah.
- [40:47]
B
But our assessment should be culturally relevant. Yeah. And so I'm, in fact, part of the work I'm doing is building courses to train clinicians on culturally informed assessments. Because that's a big thing that's missing in the way assessments are done. You need to, when you connect with people where they are, you can listen to them. So we don't, we don't negate their worries or beliefs. We understand it from the point of view they're coming from because there's a reason why they have those thoughts. You know, we're all coming from different cultures.
- [41:27]
A
Yeah. You know, I was born in the UK and when someone said to me in the beginning, your child's autistic, I thought, what the hell? That's not something you'd say. And I was autistic all along, so I understand completely.
- [41:39]
B
Yeah. So we need to. And that's what we need to do. We need to do things where we're talking to people like human beings and actually trying to explain things to them. Because if we use the typical Western way of explaining things, you know, not many people will connect with that because we have to bring things down to their level. And that's the thing, what I'm. I'm trying to do and develop ways in which we connect with our community. We don't.
- [42:09]
A
I'm so glad that. I'm so glad that. Because I didn't know that anyone was doing that. And it's something I've been thinking about for so much. So I'm so glad that that is in. In the pipeline.
- [42:20]
B
Yeah. And if you ever want to, like, do a program or something, a webinar, and you want me to come and talk, I'm happy to do that. Emmy.
- [42:29]
A
Amazing. Thank you so much. Because I do. I think it is. Is so, so important. That's why I try and get lots of people from lots of different cultures. Because it's so important. Because neurodivergence is everywhere.
- [42:41]
B
Yeah.
- [42:42]
A
You know, it doesn't discriminate.
- [42:44]
B
It is. It is.
- [42:45]
A
If someone's listening today because they're worried about their own child, but they don't know where to start, what would your advice be?
- [42:55]
B
Oh, my advice would be, again, document these concerns. Document what you have noticed. Look for. I think it's always good for people to connect again, maybe with support groups around that they. You can talk to people. But we're here, so I'm happy for people to, you know, contact Early Intervention Matters, podcast, ask questions. We've signposted people, you know, to, you know, appropriate places that they can go. We also try to produce some relevant information for them to see. And we think when we produce. We feel that producing readily available information in ways that people can understand helps as well, so that they know which direction to go.
- [43:50]
A
Do you think we're getting better at destigmatizing neurodivergence? Are we getting there?
- [43:57]
B
I think maybe a little bit, because obviously there's more talk about it, but I think that there's still a long way to go in terms of the public also. Do you understand? Because we still have those things where, I mean, I was at an event yesterday, and there was a little boy who was with his mother, and it was a kind of cultural event. And what was interesting is I immediately, I saw the little boy getting quite distressed. I mean, it was such a busy day yesterday. Yeah. Immediately I saw the boy getting. I could spot that he was autistic and he was. He was, you know, with his mom. His mom was trying to settle him. And then I heard some people, obviously from my culture, say, who is that boy making that noise? Who is that boy making that? And I was like, yeah, this is it. You know, they can't relate that. They can't. You know, they. For them, it's like, why is he making that noise? Why is he making that noise? I could readily spot that he was autistic and the mother was trying to calm him down. He had been in a. A party that was quite stimulating. So I could.
- [45:12]
A
So he was sensory overload.
- [45:14]
B
Yeah. So if our communities could understand that we. We hold lots of public events and things, then it will be good for people to be that aware when they're holding this type of events and stuff, to be sensitive about children who are neurodiverse in that community. The churches as well, the mosques can be quite noisy.
- [45:40]
A
I remember because I used to send my children to the mosques to learn to read and write Arabic when they were small. And one of the mosques, they used to make my most. My one with Tourette's, face the wall the whole time he was there. And I would ring them up and I would be like, this is neurodivergence. And, you know, our religion is really not about this.
- [46:00]
B
Yeah.
- [46:00]
A
You know, so I think it's people. It's not the religion. It's not. It's the people.
- [46:05]
B
Yeah, it's the people. It's the people. Yeah. I've done a. I did one talk once on Faith and Neurodiversity University about how faith places, places of worship, need to be sensitive and need to be responsive to the fact that we have people who are neurodiverse and we need to cater for them. We shouldn't isolate them.
- [46:28]
A
Amen. What's one myth about ADHD or autism that you wish we could get rid of all those?
- [46:38]
B
I mean, one of them bits is, oh, it's bad parenting. You know, that's a common one that people would say it's bad parenting. It's laziness. I mean, I've had families that have treated their child or diagnosed them with adhd, and they said to me, oh, my God, for years we thought he was just being lazy.
- [46:58]
A
Yeah.
- [46:58]
B
And we said that, oh, no, you're just lazy and lazy. And the more that, you know, they were Blaming and really blaming the child so much so. So it's something that. It's quite sad.
- [47:11]
A
It is really sad, especially when we internalize that as neurodivergent people. And then I've carried that narrative around with me my whole life. It is really sad. When I went for my assessment as an adult, they sent me away from my first assessment because they couldn't tell whether my autism. So it turns out my dad's autistic. Very, very neurodivergent, which was hard for him to accept, but now he's. He's. He's. He's with it now. He's. He's good. But they said to me at first they couldn't tell whether my neurodivergence was nature or nurture because what had happened was my dad is very autistic and everything was very so. And everything was very in place. And we was like an army. And so we had to do everything just right. So I thought everything that he taught me was right. And this is how the world is. So they couldn't. They couldn't diagnose me at that time because they said they couldn't tell whether it was nature or nurture. Is this a thing? I always thought, what the hell does this happen to people?
- [48:14]
B
Well, the thing is, you know, it's. It's. I think what people feel should understand is that these conditions are highly genetic.
- [48:26]
A
Yeah.
- [48:27]
B
So before we start blaming nature, genetics is one strong factor that we know that the conditions are highly heritable. And that's why when we look. And part of assessments regularly is finding out whether there's a parent or a sibling or someone in the family who has similar traits. Because that's the most likely explanation for it.
- [48:56]
A
Yeah. It come from somewhere normally. What's something that gives you hope about the future for neurodivergent children?
- [49:05]
B
I think that one of the things is we are living through an era of communication technology development, and that includes artificial intelligence. And I think there is a huge scope for trying to deploy this in making communication, you know, awareness and tools to help support families use it for our better. Yeah. And I'm saying that as a clinician who has been developing apps as well, because all along I've known the areas that families I see struggle with and the children. And I've taken all that information of the pain points where there hasn't been, you know, suitable materials for them or things to support them. Take, for example, children with ticks or children with significant anxiety and all that. I've taken that in that bit of concern and tried to explore to make apps that could Accessible. Accessible.
- [50:21]
A
Yeah, I 100% agree because I remember when I went for my diagnosis, I sat down each time I went to a therapist or a diagnosis, I would sit down with a middle aged, very posh, you know, white woman, you know, something completely different to what I was. And I couldn't relate. And they were talking clinical jargon and I didn't understand. And that's why I think it should be made so accessible for everybody that you know, they can. You can find it on your platform and where you are. It can meet you where you are. Dr. Tacon, where can we find you if somebody wants to find you? Platform wise, podcast wise, website wise, where can we find you?
- [51:06]
B
So I'm on my website is www.doctor takon. Doctor takon. So it's-r t a k o n.com and that plat platform also hosts my website. It has a contact information sheet if you want to reach me. So that's and, and all my podcasts are there. I'm on YouTube and it's Dr. Inyang Takon on YouTube and I post lots of information there as well. Some short videos explaining some things. And like I said earlier, I will send some of those other videos to you because I think it will be useful for your audience to be able to reach it. And I'm also School Doctor is www.school-doctor.com and School Doctor. I co founded this with two colleagues. It's a social enterprise. And what's been helpful with School Doctor is we try to do a lot of work with school. So sometimes school schools have been able to refer some children to us to see and assess from their own budget some of the families who can, who can't afford the private fee but where the children are clearly struggling. And so we also provide training and we have a huge number of resources as well on School Doctor platform. So I would also recommend that families check the School Doctor platform. And I'm also at, on Instagram on the podcast, early intervention podcasts and Tick Tock on podcast as well.
- [52:49]
A
Thank you honestly so much. You are like, thank God, thank God. Praise God. You are a wealth of information. And there is so many areas that I wanted to go into today because I wanted to ask about fetal alcohol syndrome because, because I know a few people that have self medicated that have ADHD and then they have found out in pregnancy that they, you know, that they're pregnant and then sometimes their child comes out with fetal alcohol syndrome. But then is also affected by ADHD and autism.
- [53:23]
B
Yeah.
- [53:23]
A
And, you know, I know that these are all such, you know, areas. And, you know, there was so much I wanted to ask you, but honestly, I so thankful for you joining me today. I genuinely think this conversation is going to reassure so many parents who may be wondering whether to trust their instincts or where to go next. And I will leave all of your links because you are a wealth of information.
- [53:45]
B
Thank you so much.
- [53:46]
A
Thank you so, so much.
- [53:48]
B
Thank you, Ellie. It was really lovely being with you.
- [53:51]
A
And have a lovely evening.
- [53:52]
B
Thank you for the work that you are doing as well.
- [53:54]
A
Oh, no, thank you. Thank you so much.
- [53:57]
B
Yeah, thank you.