Unpacking Autism Ep.8: Wellbeing and the warrior: why we all deserve kindness with Dr Rachel Taylor

Reena: [00:13]

Hi everyone, thank you for joining today’s podcast where I will be speaking to the amazing Dr. Rachel Taylor. Dr. Rachel is a cognitive neuroscientist who developed the first theory of wellbeing for people with autism. She is extremely passionate about supporting everyone to live their best lives and improve their daily performance, and she does this through her website content, podcasts, speaking engagements and so much more. And she’s on a special mission to inform everyone about how where people live within themselves informs their destiny. 

She’s a northerner living in the south of the UK, has three children, two cats, and – in her words not mine – one extremely dry sense of humour. You can find Dr. Rachel on www.unbroken.me and on the Unbroken podcast, links for which are on my website. 

I first came across Dr. Rachel at one of my previous places of work, and she came to speak around the importance of wellbeing, but at a much deeper level than I had ever previously engaged with – talking about the brain and the reaction to emotion and how it manifests in us physically – and as an autism parent, I was really struggling with self-care and I was in very much self-sacrifice mode. It was all about Evy: I had neglected my other relationships, and I thought that this was the best way to serve him, by just putting all my energy into him. 

And listening to Dr. Rachel, and really taking on board some of the very practical wellbeing tips – which were digestible and things I could incorporate into a day that I didn’t feel had any pockets of time – meant that was part of my reflective journey on how important it was that I looked after myself, and that that’s not indulgent, or just a nice thing to have, but actually, really necessary for me to be the parent I wanted to be for Evy. To be able to give to all my relationships in the way I wanted to, but also be full myself.  

And so, I’m really thrilled that Dr. Rachel is going to come and talk about her experience, her passion for autism and neuroscience, the amazing work that she does, and, bearing in mind lots of people listening will be parents who have autistic children, I hope that towards the end, Rachel’s also going to share some amazing really practical tips that maybe we could try to incorporate into our life – to just help us keep ourselves topped up. 

I keep calling you Dr. Rachel because that’s how I see you! Rachel, thank you so much for joining me today. I’m absolutely delighted that you’ve made time and very grateful to have you here. Hi!

Dr Rachel Taylor: [2:59]

Hi, and thank you so much for inviting me on. I was over the moon when you did. I was like, ‘Oh, this is so exciting’, because I know you are on a real mission yourself. It’s always exciting to be part of somebody’s mission. So, thank you.

Reena:

So, let’s start with your ‘why’. What is it? What is it about autism and why are you so passionate about this area in particular?

Dr Taylor: [3:23]

I think the ‘why’ is I’ve always been a little bit different myself. You know, I’ve always been on the fringe of society. I like to say, ‘You know the bell-shaped curve or the majority? I’m not even an outlier’. Well, I’m way off somewhere else, and I’m 44 years old. It’s taken me probably the best part of 42 of those to think that’s okay. I’ve always known what it’s like to not quite fit in, not quite be as everybody else. 

And then when I was commencing my studies for my original PhD – which was meant to be around the emotion of joy – I happened to sit in on a lecture which basically said that people with autism couldn’t be happy. And this was something completely different and something that I’d never heard before, and I was like – surely that’s not quite right? My original plan was to do a bit of a side hustle alongside my PhD and just say ‘Is this true?’ And then the more I spoke to people, the more I delved into it, I thought, ‘This is a story that’s never been told; this is something that’s never been looked at’. Researchers have looked at the minutiae of brain function or the minutiae of gut biome in people with autism, but nobody had ever actually looked at the wellbeing and happiness. Some of your listeners might know this – but for those who don’t, it’s so shocking – is that even in the twenty-first century, people with autism tend to die between 15 and 20 years before people who are neurotypical, and I don’t think that’s okay. And a lot of that can be combined with their quality of life and wellbeing. 

So, my ‘why’ was I completely shifted my PhD studies! I know joy’s important, but we’ll put that to one side and we’ll do something that hasn’t been done at all before ever, and I moved into a whole world of people who had never been listened to, had never really felt accepted, who feel like that just survival is good enough, and who are apologetic for their differences. They’re so acutely aware of who they are and what that means in terms of society, and basically limit themselves. One person who was part of my research went salsa dancing once a week, and that was his human contact, because he knew that everybody had to dance with everybody else in that class. And often, during the pandemic when we were all forced into inhumane isolation, I think about people like him where that was their only human contact. Because they limit themselves so much – because they are so acutely aware that they’re different. 

I am aware that I might have got on my soapbox, but this is why I am so passionate about it – because no one person should feel that they have to contrive human contact, and that’s the only way that they can do it. We should be accepting of difference, and understanding and actually thinking that difference is good. Why should I be bothered if someone has to self-stimulate in front of me, or someone has a meltdown because their senses are overwhelmed? Why does that matter to me? Why am I not okay sitting at the side of someone in pain? It’s a huge thing. I always tell people, ‘I might do other stuff in human performance, wellbeing and growth, but my passion project is always going to be neurodiversity, people with autism’, and that’s never going to change because I’m getting quite emotional talking about it. It touched me right there. It changed me fundamentally as a person, and whenever I talk about it, I can see that people start thinking about it differently. If I can just make someone think about it a little differently, then I think that something can happen from that. So yeah, that’s my ‘why’.

Reena: [7:56]

That’s amazing, I think it’s really interesting actually, because whenever Evy used to have a meltdown in the early days when I still was figuring out ‘What is autism?’ ‘Is this autism?’ ‘Is it just him acting up?’ ‘What’s going on?’ ‘Oh, people are watching’, people felt visibly uncomfortable and were really judgmental if I’m out in public. Actually, even in some of my wider family when they see that. So, what is it about that? What is it about that behaviour that makes people feel like that? So uncomfortable in their own skin?

Dr Rachel Taylor: [8:33]

Well, I think some of it is that generally people want to fix things. You see somebody in pain, you see somebody upset – it’s like, ‘I want to make them feel better’. You know – I want to do something. I’m being probably quite kind in thinking that most people want to do that. Maybe they don’t. But when you see somebody in that, it’s like – ‘I don’t understand how to fix it. How do I make it stop?’ People can get quite uncomfortable with that. This is just not for autism; this is for everybody – every human being. 

I say to people, the greatest gift you can give someone is, when they are feeling so distressed, when they are feeling so in pain, just sit next to them and acknowledge it. Just say, ‘I see it. I don’t need to fix you. I’m just going to hold you for a while. I’m just going to be at peace next to you until you’re ready to talk to me about it’. And I think that communication is a massive issue and I think we tend to take responsibility for everything that’s happening in a room. You know – it’s all our fault, and I haven’t got children with a diagnosis of autism. I’ve got children who to me are highly traited in various aspects of autism, but we can sort of say that most of us have some traits. When I presented my research, my findings at conferences, people with autism or Asperger’s will come up to me after and say, ‘You must be undiagnosed. You must have autism. You must have Asperger’s’. And then I’m always apologetic – ‘I’m really sorry, but I don’t think I have’. And then they go ‘Ah, you’re in denial! We were there one day. We were in denial one day’, and it’s really interesting that people who are neurodiverse find it really difficult to actually grasp that a neurotypical could get them – could understand them. And I think that this is sort of the thing – when you’re talking about being with your son out in the public, or in your wider family – I think maybe some of your fear, correct me if I’m wrong, could have been, ‘They just don’t understand me’, you know? And because they don’t understand him, they’ll judge him. And ‘I don’t want them judging him because he’s my little boy and he’s the most amazing person in the world. He’s just not like other people’. And I have to say on a personal note, I often say – in my head – just [to] the general population, ‘I’m just not like you’. My coping strategy – ‘I’m just not like you’. I think that there is a lot of judgment because we’re all meant to be the same, aren’t we? We’re all meant to be and we’re really not.

Reena: [11:24]

Yeah, absolutely, and I think for me, a part of that was also I just wanted validation from others that I was a good parent. Because I didn’t feel that self-validation – not that it was coming my way anyway – was enough. That I was enough to validate myself. And I see that in so many parents of autistic children – that they feel so shamed by others. They allow themselves to be so shamed by others, and it’s not a criticism, because I’ve been there and it’s taken me a long time to get to that place where I can say, ‘This is my child. He’s perfect exactly the way he is and I am choosing right now to react in the way that I feel is best. I’m not adapting my reaction to what you think is appropriate’. But that can be quite uncomfortable for a lot of people because they think it’s lazy parenting. But I know what I’m doing. I think that when you are in a place where you don’t have that self-care, that you just are seeking outward validation that you’re OK, you’re doing everything OK as a parent.

Dr Taylor: [12:34]

Yeah, because there’s such a dissonance inside you isn’t there? It’s just like: ‘I love my child. They’re amazing, but they’re not like that other child over there’. We have to say as a society we’re failing. We’re failing so many people; not just people with autism, but anybody who doesn’t fit into the norm. Who dares to challenge societal conditioning or normality? Who dares to put their head above the parapet to say ‘Hey, we need to consider this, or we need to do that’. And it’s not getting better. I think the polarisation is getting worse, and something that I don’t feel is really helpful is when people’s conditions are overly medicalised. Like, the only thing that matters is the medical model and just going back to your comments on parenting, it’s really difficult because when I was on social media…I don’t do that, but that’s another story. We could talk about that another time. You know my hatred of all things social. 

But look at groups of parents who just want to have support from other parents with autism, and the memes that are used. There’s this general assumption that to be a parent of an autistic child you have to be a warrior, and that you’ve been chosen by God because you’re so special – because you can cope with a child with autism. And I understand that that’s validation, but that’s not helpful for that child. It’s not helpful and I just wanted to say that my research predominantly was in adults who were diagnosed with autism. But those adults were once children and your children are going to be adults, and they don’t grow out of autism. ‘Oh, they’ll grow out of it’. No, you don’t grow out of autism. It’s just that people with autism have to have special support to learn how to navigate a world that is really hostile, even for neurotypicals. 

So imagine if you have a brain that actually is super-duper globalised in some areas, but really specialised and localised in others, trying to make sense of a world that is so nasty and mean and judgmental. I was talking about ‘hostile environment’ with my PhD supervisor. He said, ‘You need to be really careful about using that environment – you know, with the Home Office’, and I just said, ‘But I don’t know how else to describe an environment that is really unforgiving. That actually is full of toxicity which people with autism tend to be more sensitive to. Which have these rules that don’t make sense to somebody who’s neurotypical, so is going to make no sense whatsoever to somebody who doesn’t understand social rules’. I think, for those of us who can advocate, and for those of us who are touched by this and who are passionate about this – I think we need to move away from the combative ‘I’m a warrior’ sort of pose and into a more ‘I have lived experience so I know what I’m talking about’. You know – ‘This is our life and I’m not going to apologise for it, but equally I’m not going to let you get away with having zero compassion or zero kindness towards a child who is struggling with what’s going on right now’. And I think we need to move more into that – move from that worry where we’re hiding in groups, into this advocate role, where we’re actually saying ‘We’re all okay and you need to know this’.

Reena: [16:51]

Yeah, completely, and I can see how if you perpetuate this ideology of a warrior, all of a sudden the bar is lifted, right? So you can tolerate more. Everything is amplified and actually you’re now trying to fit into a construct which is really not serving you.

Dr Taylor: [17:15]’

Yeah, unless everybody’s Boudicca! I don’t want to limit everybody to one type of warrior. Other warriors are available! But you’re quite right – it’s a construct; it’s a social construct which has no flexibility for the days when you are absolutely shattered yourself – when your energy is low and you might not want to have to cope with a meltdown in the middle of the supermarket, and the judgmental views, and you might actually have a meltdown of your own. You know, Ken and Susan across the way, who are stood there with the trolleys – ‘tut, tut, tut, what a bad mother, what a naughty child’. And this is what we have to deal with; we all should be that little bit more kind and that little bit more compassionate, and actually understand that it’s not a general thing you see – a child having a meltdown. That’s not how children generally are. If it’s happening, it’s happening for a reason. Sometimes I’m having a meltdown in my head when I go shopping myself. It’s just that I have the emotional regulation to know that it’s alright in my head, I just can’t do it out there. I’m fortunate like that.

Reena: [18:37]

I completely agree. I mean, the impact of kindness is just phenomenal and I remember one time I was in the supermarket and there was a child…I think there’s something also about being an autism parent that makes you so much more compassionate towards other children. I think in so many ways I am a better human for being Evy’s mum, because I’ve been able to identify the masks I was wearing and shed those and just live in authenticity. And I remember a child coming in the supermarket and diving into my basket and pulling out my grapes, and the father was just mortified. And I could tell that there was something – this child was probably autistic. There was a lot of similarity between him and Evy, and the father you could tell was beside himself. He looked really stressed and I just gave him my grapes. I didn’t need to say, ‘Oh, I’m a parent of an autistic child’. It was just – ‘It’s fine. It’s okay. I’m going to go over there and…’

Dr Rachel Taylor: 

You just have that knowing look on your face, don’t you? Yeah, I’ve been there.

Reena:

‘Have my grapes, it’s really fine. I will go back round, get some more’.

Dr Rachel Taylor:

There’s something about soft fruit – you can never rescue it, can you? Once it’s been grabbed at, it’s like, ‘Yeah, have it!’ [laughter]

Reena:

I promise that was not what I was thinking, but yeah, that’s true.

Dr Rachel Taylor :

See, that’s the difference. Listeners – that’s the difference between Reena and myself. [laughter]

Reena: [20:05]

Something that you’ve talked about in the past… You’re obviously hugely passionate about mental being, but I’m really keen to hear from you about the correlation – and if there is one, I guess – between autistic individuals and their mental wellbeing, and what we know about that.

Dr Rachel Taylor: [20:26]

Well, interestingly, and quite timely, although I didn’t quite realise it – this morning, I was writing up some research, and I was looking for some data to back up my research, and I found something that was really interesting and, not nice actually. Somebody was looking at a meta-analysis of suicide rates in 2016 to 2020, and the prevalence rate of people with autism who were committing suicide. It was 10.8 % of the suicides, which is so much higher than the prevalence of people with autism against the general population. 

‘Wellbeing’ really bugs me because people think of wellbeing as…you know, it’s been hijacked by the Yummy Mummy Brigade to a certain extent. ‘Oh, get some smelly candles’. ‘Go to yoga’ – you know, whatever. ‘I’ll get some bath salts’ – all of it. And I’m not saying that they’re not nice – so, disclaimer, I do not disagree with all of that. But when I talk about wellbeing, I’m talking about keeping the body in homeostasis. I’m talking about keeping balance. Enabling the best environments so that somebody can be exactly who they want to be. Now, for me, that research which is recent – too recent for me – was showing that over 10 % of suicides in the UK were from people who had a diagnosis of autism. And that shows me that wellbeing is still not on the agenda. And what is really interesting to me is that I contacted many people in the NHS, I went to a couple of away days when they were looking at strategies with autism, and nobody was interested in my findings. My theory – nobody was interested at all. It highlights that people with autism and the services that they connect with – they’re not being served in terms of their wellbeing. 

And something else that’s also really interesting, when you look at the various tools and measures and interventions that are available for people with autism, a lot of them are centered around – and for me it’s really telling – how to teach autistic children to manage negative emotion. And what’s really interesting for me about this, is that in my research, people with autism were averse to feeling joy because they couldn’t stand the after effects of joy. You know, they’re quite happy with the anxiety. They’re quite happy with feeling frustration. That was the norm; that was familiar. But if we are talking about wellbeing, it’s universally known there’s so much research out there for neurotypicals that what underpins a feeling of wellbeing is the ability to feel positive effect, a positive emotion. We’ve got nothing out there – any of the services used to start to facilitate how people with autism can manage positive affect, so that they don’t get doom and gloom. Because when I’ve felt really good, I can’t stand to feel the lows after it – so they avoid it. It makes me wonder whether people have developed these interventions – developed these tools – because we are so uncomfortable with seeing people exhibit a negative emotion. We’re alright with people who are just apathetic and feel nothing – you have the neutrality of it – and so we need to teach people to be sort of automatons. For the whole of wellbeing, how can somebody be well if they cannot experience – joy at the ultimate point, but a sort of eudaemonic and internal happiness at a midpoint? So that’s why wellbeing is so important to me. 

The things that came out in my theory was that what was important to people with autism and their wellbeing, was to have meaning in life. And people are like ‘Oh that’s pretty tricky’. You know? What does that mean? They had to know what their role was. They had to know that they were valued. They had to know that there was an importance to their being on the earth, and it was described in often poetic language. If I don’t have meaning – I’m taking so much energy up trying to find a meaning that I cannot wait until I’m no longer in this mortal coil. Forgive me again. I often get emotional when I’m talking about this. Because these are people, you know? This is not a measure; this is not a questionnaire. This is not: ‘It’s statistically significant for an autistic person to feel this, or do that’. These are people’s stories. These are people who were so anxious to be part of my study that they had about four or five practice runs to get to where we’re having the interview, so they know they were going to be on time, they knew that they were going to arrive there… And this is why I get so emotionally moved by it, because this was the first time they’ve been asked. How simple would it be to reiterate to all the people that we know with autism, that just being you is special? Just being you adds value. Just having your unique take on life gives me a perspective that I’ve never thought of before, and we just don’t do it. 

The second part of my theory was acceptance – and not just acceptance by others. I think we need to really underpin it, and really teach people with autism that they can accept themselves. In my theory, what was really interesting for me – the golden thread that pulled it all together – was a social comparison theory. Now, most people who talk about people with autism – if I said to Joe Public or Josephine Public – ‘Describe someone with autism to me’, probably they’ll have either Sheldon Cooper or Rain Man. Or they might say, ‘Somebody who doesn’t really acknowledge other people in society, just does their own thing, doesn’t really feel emotion, doesn’t know how I’m feeling’. All of that is wrong. People with autism, they feel the emotions of others so acutely – even before they enter into a room – and then they’re comparing themselves. Social comparison – they’re comparing themselves against everybody else, and people don’t get that. 

So when I talk about acceptance, I think we need to move the conversation on about autism. All this autism awareness…it’s a disservice now for me. We’ve done all that. If you’ve not got it, after 25 years of people doing it, then there’s something wrong with you. So now I need to move the conversation on – autism acceptance. What does that look like? Well, neurotypicals – know that for whatever you’re doing on a daily basis, someone with autism is going to use 10 to 15 % more energy just doing what you’re doing, so they’re going to be tired at some point. Expect [them]to meltdown; expect them to be abrupt. Expect them not to have social niceties, because they’re just too tired. Let’s just accept it. Let’s just accept that they are who they are, and that doesn’t make any judgement on us. Parents – just because your child is a ‘way’, it’s not a judgment on you. So, if we were all kinder to parents like yourself, you wouldn’t feel judged when you go anywhere. You’d just feel supported. If we lived in tribes like we’re meant to – you know, when you’re tired Reena, because your son is literally on the ceiling because he’s so overstimulated – there’d be somebody to take over from you. Because there’d be somebody to say ‘I see your tiredness Reena, and I’m just going to come in for a few hours so you can go and have a rest’. But we don’t live like that. So that’s what acceptance is.

Reena: 

Yeah, yeah.

Dr Rachel Taylor: [29:55]

So, this is wellbeing for people with autism. And I’m going to put a challenge out. Let’s start this conversation with your listeners, Reena. 

The services that you’re involved with: does it ever talk about what role and meaning your child has? Or how accepted your child feels? Because if they don’t, let’s start that revolution because I’ve struggled to get it into the NHS. My findings – they weren’t from me. They were from people with autism. I was just the storyteller. I was just a person hearing it. It was from people with autism. So for me, when that’s not listened to, you’re still not being listened to. And I won’t stop until you’re listened to. I can promise you that.

Reena: [30:40]

I love it. Please don’t stop. But gosh, there’s so much there I was mentally bookmarking to pick up on. Where does it start? Where do we start though? So if we’re saying, ‘OK, we want to get to a place where autistic individuals feel psychologically safe in society, to accept themselves for the amazingness that each unique being has within them’ – does it start in schools? Does it start from home? Where does it start?

Dr Rachel Taylor: [31:10]

I think it has to start with neurotypicals. I think it needs to start with neurotypicals saying ‘Enough now’. Let’s not cordon off that corner and that child can go…[over there]. That’s from a very early setting, so like you were saying, you felt judged by your wider family and things like that. Why are we judging people? Why are we not accepting that sometimes it’s a tough gig being a parent? I say ‘sometimes’, I should say ‘most times’. So, it has to start with neurotypicals because we are the ones who set the rules. We are the ones who say, ‘This is what normal looks like’. I hate normal. You know, I’m just not like you norms! I don’t want to be normal – but for somebody with autism they’re desperate to be normal. They’re desperate not to have difference. And why is that? Because we make it so hard for them. 

So it has to start with neurotypicals. And then where does it go? Right – parents of people with autism – when you’re interjecting with these services, you need to start saying ‘This is not good enough’. This is not good enough, particularly for those of you who are paying for services. Stop being grateful for the crumbs off the table because change is not going to happen until we start saying, ‘This is not good enough. This is not acceptable. This is not what I foresee as being supportive to me or my family’. Going back to the warrior parent again, because of this acceptance that you have to battle everything – that everything is hard work, that everything that you get is achieved by maximum energy – it enables those services to provide services that are not quite good enough. I don’t want to criticize services who are probably overextended. But there needs to be a redesign, and the autistic voice has to be at the centre of that, and it’s still not. 

If you can look at research, you will see in every bit of autism research in the limitations it will say that more needs to be done to listen to the autistic voice. All of them. You know, even I, who listens to the autistic voice, puts ‘more must be done to listen to the autistic voice’. There’s so much out there. I co-authored a paper looking at how to research with people with autism: this is what we need to do. We need to listen. We need to do service design around what that person with autism needs. And I still don’t see that being done.

I look in schools – and I can say this with authority because I had an issue with education – so I did a PGCE, and I could only afford to teach part time because you pay teachers a pittance and I have to do my other stuff as well. But I thought, I cannot criticise education unless I’m willing to get in there and have a look. And…I don’t know whether people are scared of children with autism, whether children with autism are so damaged by education that they literally retreat into themselves, and they’re giving very primal sort of emotion-based responses…You know, there’s something not quite right. We should be supporting those children more. We should be nurturing them. We should be helping them to believe.

Looking at education systems, and particularly what’s happened in the pandemic, we’ve sort of given a message loud and clear to children that you don’t matter. None of you. So if we’ve done that to all the children, God help children with special needs, you know? God help people who are literally struggling with neurodiverse issues. But until we say, ‘This is not good enough’ and also, unless we’re brave enough and have courage to try something – this is something else that I think is really important – is that we have such fear of getting things wrong, that we don’t ever want to try to see if we can get it right. If something’s half-okay, say 33 % of your population are okay with this – or maybe they’re not but we don’t know what to do with them – we’re scared. Of being able to hold our hand up and say, ‘You know what, we’ve got it wrong, but we’ve learnt from it and we can go on’. But unless we did this, we wouldn’t know what to do and I think service providers – particularly speaking with parents – need to say this is like a holistic approach. We need you; you need us. We’re going to figure this out. And we’re going to work together and some things might work, some things might not, but we can evolve. We’re not going to be in this place forever. How would you feel as a parent if that was a conversation had with you?

Reena: [36:55]

I think the parents I speak to, literally feel like they need to armour up in order to have any kind of meaningful conversation with services. I think all of it does also come back to investment and resource and there just isn’t enough there, but I feel like the people who have the most contact with our children are often the teaching assistants and learning assistants. And they’re not even on the radar for being given autism training or any other type of really meaningful special needs training until they’re teachers. But these are the people who are spending hour after hour. They’re the ones on the EHCP plan, fulfilling that time with your child. And so for me, I’ve really taken it upon myself to get right in there and have those conversations. But there’s a lot of parents who aren’t in that space yet where they can do that. And because they’re not able to do that yet, their child’s not getting the support they need.

Dr Rachel Taylor: [38:02]

This is really interesting to me, that you mentioned that specialist training and neurodiverse focused training – it’s like, do people need training to be kind? Do people need training just to notice that when a child is in distress, that the child is in distress and not being naughty? They’re distressed. Have we really disconnected so much from human beings that we cannot see a child in pain? That we cannot see a child who’s confused? That we have to instill our power and control model which is inherent through society on the most vulnerable people. 

I understand that some people might need specialist training, particularly in terms of knowing if there’s different learning techniques, but I think what you’re talking about is when a teaching assistant does not know how to handle a child who has had too much exposure to too much during the day, and can’t handle that. Or, the child who’s got overexcited because there’s so much going on, and it’s just like, ‘Sit in your chair! Sit in your chair!’ What child generally can sit down, when they’re [excited]…? It’s like we give excuses. When you talk about investment, and we talk about overreach, the resources are scarce, blah blah blah…well, I don’t know, maybe somebody can correct me, but I don’t see kindness as a commodity that has to be purchased, you know? No one has given me that memo that that’s where we are now. In the twenty first century, you want to be kind? That’s going to cost you. And I think this is really important. It’s like, parents – when you’re initially going through the forays of having a diagnosis – that in itself comes with a plethora of judgment, of shame… You know, what did I do wrong? My God, what happened in my pregnancy? What did I do? All these things, it comes with that. Go armed. ‘;What do you want for your child?’ ‘I just want you to be kind. I just want you to be understanding. All I want you to do is tell my child he or she is okay as they are. Don’t make them feel shame; don’t make them feel different.’ Let’s just accept, because the children in the class will. My children have been in classes with special needs children from nursery, and it was just, ‘Oh, that’s just that child. That’s just what that child’s like’, and it’s acceptance at that level. And it’s only when adults teach children that difference is wrong, as they get older, that they do start that judgmental bullying, standoffish behaviour. But at primary school and at nursery, they’re very accepting of difference, exceedingly accepting, and we should capitalise on that.

Reena: [41:09]

Totally, totally yeah. You mentioned about being kind. Now I know you’re on a movement on kindness – and kindness on a whole other level. Not your Be Kind meme or Instagrammable t-shirt type thing, this is being kind on like a whole other level. So before we wrap things up, talk to us a bit about your movement.

Dr Rachel Taylor: [41:31]

Well, I want people to start being kind and do everything in kindness – in terms of, we’re not indulging ourselves here. So generally, when we say ‘Oh, be kind’, it’s like ‘Aah, there there’ and indulging ourselves? ‘Oh, I’m going to have a bar of chocolate’, but for me, when you’re kind, it’s about that you have a medium and long-term goal in mind. ‘What can I do now to soothe and nurture myself, so that I can be who and what I want to be in the future?’ And I think kindness should start with the self – so ‘How can I be kind to me?’ – and then move on to other people. Because if you are in a position where you are feeling so isolated, so alone, like nobody understands you, and then you think, ‘Well what I’m going to is do random acts of kindness to other people’ and then you don’t get any back, you’re literally going to start feeling ‘What’s wrong with me?’ It’s going to perpetuate that: ‘I’m not okay’. But if you turn that kindness to yourself and start thinking, ‘How can I be more kind to me? How can I stop punishing myself? How can I stop sabotaging everything I’m doing?’, and move into that space, then things are going to improve. I remember once – I can’t remember what version of the lockdown it was – but I remember it was a January and I remember my partner was still stuck in New Zealand (which was a whole new other story) and I just remember I used to be: ‘I’m so tired. I’m going to go to bed. I’m going to have some dark chocolate, that’s good for you’. You know, you’re having a Green & Black’s every night and going to bed at half-five. That’s not good for you. Got to day seven of this, and I thought ‘Oh my God, I’m indulging myself’. This is not going to end well. And that’s the difference. It’s like the first night could be – ‘Oh, this is a treat. I’m going to go to bed really early. I’m going to take a good book and some dark chocolate’. I convince myself, it’s dark chocolate so it’s good for you. It’s not your Cadbury’s, so it’s good for you. But it’s not. That was not going to end well. 

However, me sort of thinking ‘Right, I’ve finished work. I’m going to take the children – even if it’s just around the block – and we’ll do that every day’. That’s going to lift our spirits in a week, a month – and that’s what being kind really is. Not the indulgence. So yeah, I hate ‘Instagram – be kind’, ‘hashtag be kind’. I hate it and I’m on a mission for people to understand the difference – because that’s not kindness. That’s like, virtue signalling, which isn’t kindness whatsoever. Because how kind are you to yourself? Because I can’t see it. I can just see quite a lot of pain in you. And how kind are you to other people? So yeah, that’s what I’m on a mission to do.

Reena: [44:17]

Ok, I remember when I was in that kind of self-sacrifice kind of mode, and to me the thought of being kind to myself, I just equated that with indulgence. Are there any really practical tips you can offer on how we can a) get out of that mindset and b) actually be kind to ourself?

Dr Rachel Taylor: [44:40]

Well, I think you have to get your big boy or big girl pants and pull them right up and recognise that anything that you are sacrificing or not doing for yourself is like you’re punishing yourself. It’s probably punishing yourself for having a child with autism, and then feeling guilty – because, aren’t they amazing? It’s literally to recognise that when you are within a situation which is not the general societal norm, you are initially going to have to understand that you have to accept. And acceptance can take a long time. It’s like acceptance of anything – it’s a process. We’re all going through a process, the whole of life is a process, that’s what it throws at you. 

A really big tip would be: ‘Just accept that you’ve got to accept’. That’s the first thing. Just accept that nobody asked for this, but I’ve been given it. Just accept that. And then the second thing is you are being kind to yourself, you are not doing things that are going to weaken your systems. It’s like, ‘Right, I need more energy, so I need to get good sleep at night. I need to get outside and have ten minutes of sunlight before I do anything else’. In winter it can be a bit tricky, just get outside as soon as the sun’s up. Ten minutes. Anybody can have ten minutes. In that ten minutes you might want to get your heart rate going to about 60, 65 % – do some squats. If you’re hardcore, do some burpees. Just give yourself that ten minutes at the start of the day and that literally will set you up. Set your hormones up for a really good day so you’re going to sleep well at night. If you’re exhausted, your poor adrenals might be a bit amok. Make sure that you eat within ten minutes of getting up. Just a small amount, and that can really help with adrenal support. And then the last thing is laughing. It’s really good. When we laugh, we get a really good hormone that’s generated, that actually is anti-aging. So laughter really is the one of the best medicines. 

The final thing that I want to say, is that you’re not going to get it right – ever. Never ever are you going to get it right for anybody. So as long as you are alright, everybody else around you is going to be alright. And as long as you’re feeling buoyant, and – I want to stay optimistic, because I hate hope. Yeah, we want to be optimistic but we don’t want to be wanting a knight in shining armour, which is what I think hope tends to do. You know, it’s like, ‘And suddenly – I was rescued’. No. Because that never happens, does it? You have this optimism, that I’ve looked after me – so I’ve got enough to look after you. And that really is my top tip. You know, in a very roundabout way.

Reena: [48:00]

I love it. That’s the most beautiful note to end on. I’ve looked after me so I can look after you. Yeah, that is actually very, very powerful. You have been phenomenal. Thank you so much for sharing your incredible wisdom and giving us your time today. I feel like this is the tip of the iceberg and we could probably have a lot more conversations. So who knows, maybe there’ll be a ‘Part 2’ in the future.

Dr Rachel Taylor: [48:27]

Well, I’m always happy to talk to anybody – I hope that it’s come across that I’m very passionate about autism. They have a special place in my heart, a very special place. The nice thing is, that guaranteed, my children can always seek out the special… It makes me laugh, whenever we go anywhere – to play down the park – we will get the child who is different to the other children, just like drawn to us. And I think that’s just such a wonderful thing, and it just reminds me that this is really needed. This acceptance is just really needed. But thank you so much for having me on; I’ve enjoyed talking about my passion. Thank you.

Reena: [49:12]

Thank you so much. And look at the website, you’ll see all the resources where you can find out more about Dr. Rachel. Sign up for her incredible mail shots which always have beautiful poetry, affirmations – just chock full of inspiring content. All of that is on the website.

Dr Rachel Taylor: [49:35]

Thank you. Thank you so much.