Unpacking Autism Ep.7: It’s not just the autism: neurodivergence and mental health

Reena:

Hi everyone, and thanks for tuning in to today’s episode of Unpacking Autism with me, Reena. I’m really happy today to be having this conversation with Lavinia Dowling, who is a lady that I met at The Autism Show earlier this year. And as we were talking about the incredible organisation that she’s set up and the work that she did, I found it so inspiring that I knew when the podcast was being recorded, this was someone who I wanted parents to hear from, because of her sheer wealth of experience and knowledge, and the fact that she has the only organisation that actually links mental wellbeing and autism. Which sounds bizarre when – as a parent of an autistic child – most of my work is around supporting Evy with his emotional regulation and supporting his mental health. Doing that has enabled him to thrive and it almost is quite frightening that there isn’t more conversation in this space happening. 

But the good news is we do have Lavinia and her phenomenal organisation and the work that she does. We’re going to hear about that, but just a little bit about her first. Lavinia’s actually a psychiatric nurse consultant and also the founder of the organisation called ‘The M Word’. She’s practised as a licensed health clinician for twenty-five years in an array of capacities, including hospitals, nursing homes for those with dementia, drug and alcohol rehab, forensics, CAMHS teams – so child and adolescent mental health services – mother and baby units, autism screening and assessment, A&E and the military. In fact, I’m not sure Lavinia if there’s anywhere you haven’t worked!

Lavinia Dowling: [2:06]

That was my plan, yeah.

Reena: [2:10]

So, she works with children, adolescents, young adults and older adults with a broad range of mental health issues, and she has a wealth of experience in helping autistic clients and those who have also got military trauma. Lavinia believes in empowering her clients to move forward in a healthy way, by understanding and listening to themselves, identifying negative coping mechanisms, and discovering the positive coping mechanisms that can enhance their wellbeing. In 2006, Lavinia designed a model of care called ‘emotional problem solving’, which you’ll hear about today, and that’s designed to reduce negative mental health symptoms, boost self-esteem and build resilience. It’s an absolute pleasure to have you on Lavinia. 

As someone from the South Asian community – where talking about issues around not just autism or other hidden disabilities, but also mental health, are still quite stigmatised, are still not really openly shared – it is so wonderful that we are really going to get stuck into this subject today. So, thank you.

Lavinia Dowling: [3:14]

You’re very welcome. Thank you so much for having me.

Reena: [3:18]

So, can you maybe tell me a little bit more about The M Word? What is it that you do?

Lavinia Dowling: [3:24]

So, The M word was born, I suppose, out of the fact that in 2006 I had launched originally ‘emotional problem solving’ and I had been working extensively in CAMHS by then across four different counties – from community to A&E – and I was losing the plot a bit: in a fit of temper. I was working several days in a row over several weeks doing triage and half were coming in with traits of autism and yet we had no service to offer, so we would effectively be discharging them. Now, I don’t mind discharging people in triage, providing there is a service to refer on to – I have no qualms whatsoever with that. What I do have an issue with is if it’s one or two, that then becomes two-digit numbers. That then becomes three-digit numbers over a month. Hang on a minute – there’s a problem here. I suppose if I’d only worked in one county, I could have been forgiven for thinking it was maybe just that county. But because I had worked across four different counties over an intense period of two years, I was like, ‘No, no, no – this is becoming either all of England, or probably even worse all of the UK’. And I know that the mechanisms – having been a manager as well as being a specialist clinician – I knew that the mechanisms… it’s impossible to get a service up and running. You have to be extremely highly qualified doctor-level/really be manager/high manager level to get anything done, and it has to be agreed, and there have to be processes…etc etc. Parents haven’t got time for that. Children haven’t got time for that. And so, in a fit of temper, I thought, ‘Do you know what? I’m going to create a company and I’m so utterly fed up of hearing that autism cannot be associated with mental health. That it’s two very different things. I’m going to call it ‘The M Word’, because people will want to know: what does the M stand for?’. And it’s like, ‘Well, you know – mental’. And nobody wants to be associated with mental. And so, The M Word was launched, officially registered in the January and officially had its doors opening in July. And things cottoned on quite quickly with people because of course, if you haven’t got a service and then somebody pops their head up and says, ‘Well, I now provide it’, you can imagine what was beginning to happen. 

But within a very short period of time, I had to leave CAMHS full time to work for The M Word. It’s an interesting one because I don’t want it to get too big. I want it to remain very family orientated. But equally I don’t have an issue with other agencies going, ‘Do you know what? There’s a template, we can see it works. We could do similar’. There’s plenty of customers – clients – whatever you want to call them. But at least if I set the template, if I set the bar, we kind of know what standard we’re looking for, and I do have quite high standards when it comes to…these are our most precious commodity. These are our children. They are going to be our future batons for our futures, and actually, if we don’t get it right for them, when are we ever going to get it right?

Reena: [7:01]

Yeah, absolutely. I couldn’t agree with you more. And so do you find that a lot of your patients or clients are autistic?

Lavinia Dowling:

So, because I am the only independent CIC doing this – yes, of course. And a lot of people do come to us thinking it’s for their children, to then be sitting in and going, ‘I do that, I do that. Oh, that’s why. Maybe I should get screened’. So, we invariably have a lot of parents who also then say, ‘Are you able to screen for me as well?’ And it’s much easier to do it from that as well, because obviously we’ve already done a lot of the history taking. But yes, certainly most of our caseload is thinking about autism and mental health rather than just mental health issues.

Reena: [7:55]

So, people will come to you for an assessment, obtain that, and also have follow up therapy?

Lavinia Dowling: [8:05]

So what’s interesting is that once people know that there is a service that does exist – so forging the link between mental health and autism – sometimes what you’ll find is that we will have people who already have a formal diagnosis of say, autism or ADHD, but because the mental health issues are still present and not reducing, invariably they come to us because they’re like, ‘Something’s still not right; we don’t know what it is. Can you help us?’ And what we find more often than not is that they have something else that’s missed. But there is this common belief that there is autism or ADHD in the same way that there is anxiety or low mood, when the reality is that people generally have a blend of autism and ADHD, anxiety and low mood.

Reena: [8:58]

Yes, absolutely. And I remember reading some statistics – something that was published by Autistica – 7 out of 10 autistic adults experience anxiety in the clinical sense. What is it about autism that often comes hand in hand with anxiety?

Lavinia Dowling: [9:29]

Yeah, so the intriguing thing about autism is that we felt we knew a lot about autism a century ago. We still feel we know a lot more; we have indeed learned a lot more, but we’re still evolving with that understanding. One of the biggest things that we still cannot get our head around with autism, is that if you put an autistic person in the wrong environment, they are naturally going to have anxiety. And I don’t really understand why professionals don’t really consider this – particularly mental health professionals – because in CAMHS there’s a very clear message: if it’s autism and you’ve got anxiety in school, it’s the school’s problem. So, they won’t help. They’re immediately discharged, and the school will turn around and say, ‘Well, hang on a minute, if it’s anxiety, it’s got to be CAMHS’ problem, because you’re the specialist. You know what to do with anxiety’. CAMHS will immediately come back and go, ‘No, it’s your problem, it’s your environment. You need to sort it’. 

Yeah, so everybody keeps chucking this client around with their difficulties as being the problem and invariably school and CAMHS will reject and say, ‘Well then it must be the parenting’, and all along the young person is still being put in this environment that is extremely stressful. And people do not look at what autism is about, to consider why a young person is experiencing anxiety. Now for the likes of you and me, when we were in primary school, autism was very much about the Sheldon Coopers. It was Asperger’s. Understanding that autism could affect so many young people was just, you know, ‘No, doesn’t exist’. 

And even today, commissioners up and down the country will insist that autism is a minority area that does not need support. And even today, one of my meetings was with the team in the UK who have been specifically commissioned to provide only for mental health and autism. But they’re a very, very small service. The commissioners are still missing the understanding that it’s not a minority, it’s a majority. There’s a lot there. And until we can get our head around the fact that actually, I mean, I’m willing to take a bet on this quite openly, I think there is at least 50 %  – at least – who are on the autistic spectrum. 

That has huge implications, does it not? Because at the moment we have mainstream education insisting that autism and mental health issues is a minority still. Well really? Because if you have, in a school of over a thousand people, if you have pastoral care complaining bitterly about 150 of those people openly self-harming. Not all autistic people self-harm. Now why are they self-harming? They need investigating. But also, what about the autistic individuals who don’t self-harm in the obvious sense that the NHS has decreed self-harming is? We know that a lot of autistic individuals wouldn’t dream of getting a knife or a blade to cross their wrists, but they wouldn’t think twice about banging their head on the door or punching their fists or cracking their knuckles in some way, as a form of stimming to somehow regulate themselves – they wouldn’t think twice about that. Now that to me is a form of self-harming, but very much from an autistic perspective. But if you don’t understand that and you don’t see it, you will insist that it’s a minority, when I think, ‘No, you’re wrong, you’re so wrong, it’s much higher’.

Reena: [13:47]

Yeah. Honestly, I just completely agree with that. And the damage also, that it can do when you try to suppress that, those self-regulation techniques that children have, just because of a sheer lack of understanding and this desire to pursue conformity as the standard.

You know, I was talking actually, very recently, to a teacher who works at a school and who said to me quite openly that when they select particular children for particular clubs which have got a limited capacity, they won’t take on the autistic children because they don’t have the resources to support these children. And they’re not given the time to also learn and understand and do what they need, to be able to then support these children. So, you know, and if that’s one teacher – who knows how many other schools around the country are also fighting, because there is an element of, as you’ve mentioned, the importance that it’s given. And if it’s not given that importance, whether from a health or an education or another sector, then it’s not going to get the funding. It’s not going to get the attention. And ultimately, it’s the children who aren’t given the opportunity to just authentically be themselves in spaces, or have spaces entirely shut off for them.

Lavinia Dowling: [15:18]

Yeah, yeah. Which will only reiterate to them, ‘Well, there’s something wrong with me. There’s something wrong with me, and I’m not good enough to be included. I’m not able to do these things, I’m stupid or I’m dumb or people don’t like me’, because of all these ways of excluding and not including. And it does worry me that society will insist, ‘We shouldn’t be including everybody. We should be able to have the race. We should be able to have first, second and third’. But hang on a minute. If you are purposely setting children up to fail, I’m holding you accountable for their mental ill health for the duration of their life. And actually, why would you do that? They are our most precious commodity. Why on Earth would you set up a young child to fail for the rest of their life – being a failure? And that’s not even fair.

Reena: [16:24]

That’s not right. Because it’s hardly a level playing field if you’re saying it’s equality for everybody to start at the same point on the starting line. Well actually it’s not. Because if you really want to create a level playing field then you need to acknowledge where that person and that child is, and support them on that journey. Then you can say it’s equitable. But I think it’s lazy to just have a one-size-fits-all approach.

I just wanted to talk a little bit about the anxiety element, because I think there’s probably still a lot of misunderstanding and myths around anxiety. So it would be really helpful to hear from you – for parents especially who are listening in – what is the difference between anxiety and just being worried about something? Is there a way to self-identify if you have anxiety – and if so, what is that? – but also to spot those signs in our children.

Lavinia Dowling: [17:34]

Ok, so when we’re thinking about the NHS model, invariably we have people come to us who experience anxiety and/or low mood over a significant period of time. So, they will use the word ‘chronic’. Chronic is effectively ‘long time’. And what you’re looking at is, it’s not just a once a week or equivalent of a light switch – you know, it’s there when you switch on and off. It’s something that’s persistent. It’s something that really impacts upon you, where it’s beginning to stop you having enjoyment, it’s beginning to affect your sleep or your appetite in some way. When you come to The M Word, this is one of my interesting areas that I delight in, because anxiety is a very interesting one. I used to be terrified of it, but then I learned that I was experiencing my own anxieties. And once you learn about something, you realise you don’t need to be quite so intimidated and overwhelmed by it. We all have fight or flight within us, our gut reactions. And so, what I want you to consider as a parent if you’re listening in, is that you know what that feels like. But imagine if you were having that on every day. All the time. It never switched off. And you might worry about one or two specific things, or you might worry about everything and anything – all the time. If you think about one anxiety is just replaced by another anxiety, replaced by another. But what’s also very interesting apart from our fight/flight experience – we need those – so, every human, every insect, every animal, we need those, because ultimately, when that alarm goes off, it’s very much about us, our mind, protecting our body, saying ‘Okay, this is the drill, a bit like a fire alarm going off. ‘You need to respond to this. It might be a false alarm, but equally, we’re just going to evacuate out of the building safely, just in case it is a real fire’. In other words, you’re going to be thinking about do I need to flee the situation, or do I need to fight it in order to preserve my life? Now, when you understand that it’s that lovely protective feature within us all – fantastic. However, when you have chronic anxiety – and there are different types of anxiety over and above the fight or flight – you need to really understand what kind of anxiety is it. 

So, for example, some people think they’re going to die every day, all the time. And the slightest twinge, the slightest pain, that’s all they ever worry about and they have the biggest encyclopaedia going, they’re generally going to the doctors all the time with the latest: ‘I think I’ve got this’. But equally, you can have somebody who experiences panic disorder, which is a bit more rare, where you are constantly nervous. You are always uneasy, because you just don’t know what to expect. And because you don’t know what to expect, you’re worrying that you’re going to have another set of panic attacks. And panic attacks are really quite distressing because you think you’re having a heart attack, and of course that’s a preserve life thing, isn’t it? If your heart goes, you’re done for, really. But it’s the body’s way of imitating, ‘Look, this is really serious. I’m not coping very well with this, and you need to do something’. And what we tend to do with panic disorders, we then turn to restrict ourselves so chronically that we stop going out. We might not leave the house. We might stop having showers; we might stop eating a certain food; we might stop going out doing our shopping; we might stop telephoning or answering the telephone. But you can see how it really begins to impact you, and it’s over a significant period of time that you can monitor and go, ‘Well, this isn’t normal. This isn’t just a one-off. This is really significantly impacting on our mood’. Does that help?

Reena: [22:12]

Yeah, absolutely. And what you’ve just described in terms of how anxiety might manifest, how panic attacks might come about – is that all possible for children too?

Lavinia Dowling: [22:25]

Oh my goodness, absolutely. Children generally are very nervous. If you were thinking about generalised anxiety, which again, everybody has generalised anxiety in the same way they have low mood. But if you think about how that can deteriorate quite quickly – so for example, if you have a baby, who’s first experiencing being left with somebody else outside of their family who they don’t know, that causes immediate anxiety for most babies. You know, ‘Who are you? You’re not my mother. I need my mum, or at least somebody I recognise’. But after a while they will grow accustomed and begin to recognise and settle. 

But there are some children who don’t cope very well with that transition and then it becomes more pronounced when they start going to nursery. Because they know the routine is going to happen and they can’t cope with it. So, you’ll often have children in some distress being left or some distress when they are being picked up again, and really struggling with the idea of being left surrounded by people they’re not familiar with. Even when they become familiar of the environment, they’re still not settling, but you can see how the baby stage to the toddler stage, how that anxiety is slowly but surely building momentum, and it’s becoming more embedded. By the time the toddler gets to primary school, you know what I’m going to tell you? It’s going to be infinitely worse, more dramatic in features; so, you might have a child really crying, tearful, refusing to go into school on their own, refusing to conform, to go into a line to queue up to go into the classrooms, really struggling, breaking down into tears. Now, I’m trying to portray a very extreme edging, but if you’ve got any whiff of any of that, it’s something to be concerned about because what you’re seeing is a pattern evolving. It isn’t getting better, it’s getting worse. So, a lot of parents are put under considerable amount of pressure, because school professionals will say, ‘You just need to leave your child. They will get used to it’, when in actual fact, you know the life history of your child already. If you’ve got a whiff of any of those steps, those processes, you know they’re not going to settle, they’re not going to get used to it. If anything – from what your experience has been – it’s going to get dramatically worse. So, all of this is really good evidence that as a parent, you can then say, ‘Actually, I need to do something more swiftly about this because I know it’s going to get worse, not better’.

Reena: [25:17]

I hear from parents, from the workshops that I run, that with their autistic children, they won’t want to go to school and it’s especially difficult after a long period off school. So, a lot of children really struggled post-pandemic as well – being reintegrated back into that school routine. So, would it be right to say that if you have an autistic child and you’re seeing these sorts of demand avoidant behaviours, that perhaps not to just attribute that to the autism, but actually acknowledge that there is a mental health need there that needs nurturing. Does that sound fair?

Lavinia Dowling: [26:03]

Yeah, I mean, the interesting thing about the Covid pandemic is that it happens once in a blue moon – or once a century, as some people would say. But the Covid pandemic lockdown was a really interesting one for a lot of people, and I know a lot of professionals blame the pandemic lockdown – as well, of course, children have got used to being at home, But, here’s the thing, these lockdowns allowed parents to see what their children were coping with or struggling with. So no longer could be shut down by school professionals saying, ‘Oh yes, they’re fine’, because parents could see they’re not fine. They’re not coping with the level of work. Actually, they’re really behind – what’s going on here? 

And the other thing that was really a bit of a life saver for a lot of autistic children was the fact that they suddenly had respite. They were no longer having to get up early. They were no longer having to go to school. They were no longer having to perform to several demands and several experiences of sensory issues. They were no longer under duress to process in a very short turnaround of time. So again, parents, were seeing all of this. You know, ‘My children seem to be infinitely happier; we’re not having so many meltdowns coming home from school. My goodness it’s so much easier’ – and why is that? But the lockdown amazingly allowed and afforded parents a lot of opportunities to understand their children from an educational perspective, and the respite is formidable for those young people. But of course, when lockdown finishes and you come back, there is this bang, there is this acknowledgment – something’s really not right. But at least parents had a fighting opportunity to say, ‘Well, I know a bit more now and I’m not having this’, but I think professionals were very quick to turn it around and say, ‘Well, of course they’ve got used to being at home’, believing that home is the answer. When in actual fact, no, what it afforded us was a very luxurious position in dire straits to actually see what was going wrong.

Reena: [28:30]

Yeah, and on that theme of the conflict that sometimes parents feel, I’ve spoken to many autism parents who have felt that they have no choice but to send their child in, their child who is visibly distressed at going to school because there is a threat of some sort of consequence against the parents if they don’t send their children in. And parents are perhaps exploring other methods to get their child into school, without both the education professionals – as well as the parents – seeing the bigger picture on the child’s mental health. So, for example, there may be parents who will consider medicating their child in order to get them into this environment, and I guess I’d just really invite you to share what your thoughts are about that.

Lavinia Dowling: [29:25]

We were talking very briefly about this beforehand and it has amazed me how often I see and read across social media, many parents feeling obligated to frantically find a way of getting their child in to school. To the point that they will force their children, and I do mean force – they will force their children to take medication. Now I want to get parents to really sit back and just think about the bigger picture here, because in that snapshot, forcing your child to take medication is actually against their will quite often, and whilst children feel obligated to do as their parents tell them to do, perhaps you need to think of it from a different perspective. Why would you force your child to take medication so that they will enter a toxic environment? So that they will conform to an environment that doesn’t suit them, and that they will do some work that is wanted all by adults, not by a child? Why would you subject your child? Or to put a better way, perhaps – because it’s always better when we aim it ourselves – how would you feel if you had no rights, and you were told you had to take medication or face the consequences, and then be forced to go to work in an environment you absolutely hated, and be threatened with sanctions, of punishments, of extra homework, no break time? How would you feel in a workplace environment, if that was given to you? You wouldn’t tolerate it. In fact, you wouldn’t stand for it. In fact, you would probably call the Unison rep and go, ‘You need to do something about this’. Well, why is it suddenly okay for us to do that to our children, when they’re so precious? We actually override their rights? We don’t even protect their rights. We insist that they must conform in a horrible environment – perhaps even have experiences from our own childhood of hating school – but feeling terribly obligated that our child must go to school. When in actual fact, all you’re doing is sealing – and I do mean this very seriously – you are sealing your child’s fate to mental ill health for the rest of their adult life. Is that what you signed up for when you decided you wanted a baby? I bet you every parent would be saying, ‘No, I didn’t sign up for this’.

Reena: [32:18]

I think – it’s going to be really painful for a lot of parents to hear that, but I think it’s really important that it’s said as well. I know from a lot of parents I meet, there’s a real desperation. They’re not getting the support they need, whether it’s from health or education services, you know, that things start, then they stop. They might be on a waiting list for so many years for some sort of treatment. Their child may have an ECHP but actually the terms of it aren’t being fulfilled. It’s one kind of hurdle after another. It’s very rare I meet parents who will say, ‘I’m just so happy with all of the wrap-around support, working together, engineering my child’s success and secure mental health’. You know? I just I don’t meet parents like that. I can see also from a lot of what you’ve shared, that there just seems to be a real disconnect between all of the departments and things that aren’t seeing our autistic children as a whole, and instead – it’s like plaster fixing. So, ‘Let’s just do that, and put a pin in it for a short while and then it will blow up there, and that’s someone else’s problem’. 

It’s not just a problem for the child, but the family and also society – wider. But I think as much as I know it will pain parents to hear what you’ve just shared, equally I’m really keen that parents have practical avenues to go forward. So, if we have a parent now who’s listening in, who either themselves feels deeply anxious or can see that their child is visibly distressed – perhaps it’s not just school, it might be other elements of their life or anywhere that they need to go – and they want to do something practical to help build upon their child’s mental health and really make it healthy, so that they can live a full and happy, joyful life. What practically can they do to support their child?

Lavinia Dowling: [34:31]

Okay, so one of the things that you can do, is thinking about you yourself recording information. Because the perception is that there are many professionals you can go to as a parent to get professional advice. But you’re overlooking the very obvious fact that the child understands and acknowledges you as their biggest advocate. And you know they’re so able to be themselves – more so in the home environment – that actually you get to see them warts and all. So, the first thing you need to do as that professional parent, is think, ‘Right, what information would I need to consider that will get professionals going: OK, we can’t be so dismissive’? So, you need to record for at least a month, and it’s just jotting down points –bullet points more so – about things like: self-hygiene, what’s the pattern with sleeping? What’s the pattern with appetite? Are they having their little quirks? And thinking about what their interactions are like: going to and from with people, or going with transitions. What’s it like, you know? So, for example, when you’re thinking about transitions between school and home, or between home and school, and what happens if they are playing games? What happens if they’re trying to get dressed? What happens if you’re out in a shopping mall? All these enticing pieces of information in one place, actually give a much bigger picture. And when you’ve done it over a month, you can’t have a professional turn around and say ‘Well come back to me when you’ve done it for three months’, because you’ve already got a month and actually it’s already telling you volumes of information. 

The other thing that you need to consider is, just because you are the parent does not mean you’re an idiot. It means that you have information. And actually, if you’ve got a professional who’s very keen to blame you or dismiss you, go and get your evidence to go back and say, ‘No, I’m not having this. This is not acceptable. You need to listen to me’, because one of the things that professionals are always very keen to assert is ‘Actually, we like to do partnership working’. So, throw that at them, go ‘Where’s the partnership in this? Because you’re not listening to me. I have something important to say’. Believe it or not, the law of the land quite clearly states you do not need a formal diagnosis. You need to identify the needs. So, you savvy parents who spent that month being very busy recording information, that’s what we’re alluding to. Get your information in order to then go and find somebody like me.

The M Word like to provide a one-stop shop, unlike the NHS who do not provide a one-stop shop, and who do not liaise with other professionals, even though it might be still under the umbrella of the NHS. So, what I mean by that is: if you need to come in for mental health assessment, that helps you understand what’s going on from a mental health perspective, but also, is it raising any indicators that suggest autism, ADHD or PDA? Most statutory agencies will not entertain Pathological Demand Avoidance, because it simply isn’t registered or recognised by NICE guidelines. And they will say the reason why it’s not registered or recognised is because there is insufficient evidence of trials to support that PDA exists. Which is very sad because Professor Newton, who designed it in 1980, showed through her research that there was definitely an understanding of PDA in the same way that Oppositional Defiance Disorder is recognised and associated with ADHD – which ironically has got into the DSM bible, but not PDA. But there we are. I’m sure it’ll be coming. 

If you’ve then got that understanding of a mental health assessment that shows there are raised indicators, you can then go forward for an initial screening. If you’re going forward for a formal diagnosis, they have to do the same process, but it’s costing a minimum of eighteen hundred pounds to four and a half thousand pounds. I don’t want you to spend your money on that, because if you don’t need it, because the law of the land quite clearly states, can you identify the need? Why would I ask you to spend more money than you don’t have? So, what I want to then do, is be able to show evidence of ‘what have we seen? In other words, what’s going on mental healthwise with anxiety and low mood, what’s going on with autism, potentially ADHD and PDA? And from that you can help understand what then needs to happen, either with schools or within the home. 

Now a lot of parents are sent on parenting courses, because like I said earlier, schools and CAMHS like to flag together and say ‘It’s not our problem, it’s the parent that’s the problem’, suggesting that parents are quite incompetent and not able to deal with their child. Well, forgive the parent. There’s no walking manual with their child’s name on it saying ‘This is your child; this is the best training in parenting you need for this child’. But what we do know, is that if you encourage parents to build on their skill sets and consider other ways of how to work with their children or teenagers, what we find is expert parents become even more expert in learning added skills in how to support their children, but as well, learn about mental health and autism. So, it’s a very powerful therapy because it’s helping us all learn about this child’s presentation of not only mental health, but also autism, and that’s quite crucial. And invariably parents then say, ‘Do you know what? Sign me up. I want to be screened, I want to know how to look after myself’, and you can see how that goes on. 

But we also offer training for professionals, because they need to understand there is so little understanding within schools, and not much better within health. So, when you’ve done all of that, you should also consider heavily networking. So, the power of networking is quite phenomenal. If you think about in the 1970s and 80s in America, ADHD grew from several groups to over a hundred groups, that in the end, the government had to formally recognise ADHD being for children and adults. That’s some impressive networking, isn’t it? So, if we all collaborate with our networking, in other words – we all share our stories; we all see what’s similar, what’s different, what’s familiar, what works, what doesn’t work – then we have the power between us to begin to help focus researchers, academics, clinicians about: what do we really need to be thinking about from what they call ‘grassroots levels’ – what you and I call our home.

Reena: [42:00]

Thank you so much. That is brilliant. For any parents who are interested in exploring this subject for themselves or their child, what’s the best way to contact The M Word?

Lavinia Dowling: [42:15]

Ok, well, we have a very active Facebook group called The M Word Community Group. You’re very welcome to do that. Or you can find us, our website is: www.the-m-wordcic.co.uk, or simply email us on info@the-m-wordcic.co.uk.

Reena: [42:44]

Thank you. And I’ll put links to the Facebook group and the website on the podcast page as well for anyone listening in that didn’t quite catch it. 

Lavinia, honestly, I feel like we barely scratched the surface. I think we could talk forever. We could do a whole episode on PDA or ADHD – I think we’ll have to call this a part one. But I’m so grateful for you to give up your time to have this conversation. And I really hope that the parents listening in feel a bit more comfortable as well in acknowledging that actually, their child isn’t just being awkward or just difficult, or demand avoidant. Actually, if we accept that all behaviour is a form of communication, then that allows us to see that, ‘Okay, perhaps our child needs some help with something’. And having met you personally and spoken to you, I know that the work you do is so hugely valuable, and I’m so grateful that our paths crossed that day and that today you’ve been able to share a bit of what you do – and why it’s so important – on the podcast, so thank you very much.

Lavinia Dowling: [43:57]

You’re welcome. Thank you.