 Welcome to Pookie Ponders, the podcast where I explore big questions with brilliant people. I'm Dr. Pookie Nightsmith and I'm your host. In today's podcast I'm in conversation with Jodie Smitten, an expert in autism and we explore the question what is autistic masking and why does it matter? I think it's always a bit more powerful when people introduce themselves so would you mind introducing yourself to my network? Who are you? What do you do? Okay, so yes, I'm Jodie Smitten. I am a parent, first of all, to three children. One is formally identified as autistic, another one's a waiting assessment. Secondly, I am a professional working with families in the Wilshire area. I'm an independent practitioner so families can self refer to me and sadly have to self fund most of the time. So I've worked in the field of autism since I was 17 where I literally just got thrown in at the deep end, applied for a job in what I thought was just advertised as a children's home at the time, went for an interview and then got invited to the home to sign contracts and was faced with a whole bunch of children who I'd never experienced before that had complex medical needs and complex learning disabilities so there was lots of autism in with that. And actually a couple of the managers there I think took one look at me as this very small 17 year old and said we'll give her two weeks and actually I continued working there throughout my university as I'd come back and work and I just found the whole subject of autism fascinating and the different types of communication that these children were using really fascinating and so that's where my interest sort of really started. My whole career has sort of been a bit of a fluke actually. I've fallen into various different jobs with mainly the vulnerable teenagers for a long time, youth offending teams, youth engagement worker role and built up an amazing network of colleagues in doing that and about I suppose when my eldest daughter was around five or six we started to notice that she was struggling and we started to notice that after school she was becoming quite distressed. Some of her behaviour was really quite difficult for us to manage and being a psychology background I was doing quite a lot of research as to what's going on for her. We were going to parents evenings where where they were literally saying she's a dream student if I could have a whole class of her and be a very happy teacher but something wasn't quite ideal for us so it took me a lot of research because she wasn't presenting in the way that I knew autism. So that didn't actually cross my mind for a really long time. I was looking at children, I was looking at possible trauma. I was very much blaming myself for possibly a fault with our parenting all different things and then I just stumbled across an article where she just ticks every single box an article about autism in girls and I felt really sad, I felt really upset initially and my husband found me quite upset and was like but actually if she's autistic surely you're the perfect parent because you know what you're doing and I was like okay. So for a long time we were gathering more evidence and we realised that yes she was autistic and we started very much changing our approaches to how we parented her and we got her to a really good place at home. School was still always difficult for her and she was coming home and having quite big meltdowns and we just realised that we needed something more. We were quite naive, we were sort of like well she doesn't need to be assessed because we know what we're doing so why does she need to be formally identified and then when we did decide that she needed to formally identify we had a bit of a battle. So I mean all these years from the moment we realised to trying to get her assessed autism was so much my special interest particularly autism with children that don't have a intellectual disability children who don't necessarily present in a very outward manner children that mask. So children like me. So it just became my special interest. I was literally reading, reading, reading. I'd naturally sort of became more independent in my work as time went on with a colleague who'd offered me some contracts of family support work focusing mainly on children's behaviour. So it just naturally flourished that word just got around that I could support children who were autistic children that were struggling with behaviours. I felt after some time that I needed to actually do a qualification to back up the work that I was doing and started at Sheffield Helen University last year and I've just completed my postgraduate certificate in autism and Asperger's Syndrome with Dr Luke Bearden and that's just for me giving me that confidence in who I am and what I do and what I'm preaching. So I feel much more confident supporting families, educating for families and children. And here I am. I have to rewind slightly to like right at the beginning when you described who you were and your face told a million stories when you used the word professional yourself and you just missed yourself entirely in the way that you said it. Tell me more about that. It feels like there's an uncertainty here. I suppose I've been questioned by professionals who I deem to be have a higher status I suppose. Sencos, headteachers about the work that I'm doing. I think I'm trying to put a very different view out there of things and I think some people find that quite difficult. I suppose sometimes I'm going into schools advocating for a child and asking for things that aren't the mainstream that aren't the norm that go against the policy sometimes. So like what kind of things are you advocating for? So things like okay well this child shouldn't be made to sit in assemblies because they can't process that much information. They find it incredibly uncomfortable to sit on a hard floor cross-legged. They are really distressed by the feeling of the touch of somebody close by. So they're not actually taking anything in any way. So what's the point of them being sat in assembly other than the only result is no learning and additional stress. So basically saying this child needs something different going against the grain sometimes produces a bit of backlash. Is that because everyone's all about inclusion and wanting children to access everything or what's the... I don't know whether it's more about... I mean I've actually had it said to me when I've talked about particular children that I'm working with needing a bespoke curriculum. So I talked a little bit about autistic children needing a different additional emotional curriculum as part of their mainstream education and I was actually told by Senko that this is a mainstream school which was shocking. So it's maybe it's because some schools have got large numbers of students so they haven't got the resource for one child to be out if everybody else is in. Most of the time it does boil down to resources and funding. And is this because you're working with children who are perhaps masking and that was the whole reason for coming into this conversation was about autistic's who mask. So I mean it's particularly difficult for the children that mask to get these adjustments because in the eyes of the people that see them in school they don't have any difficulties. So why would you put adjustments in for a child that doesn't have any difficulties? So let's just define masking a moment. I'm just aware not everyone will know what we're talking about so let's do that and then we'll put it back up. So masking is the... I feel like there's two aspects of it. Part of it is the suppression of distress which is what I see a lot in the children I work with. So the suppression of that difficult emotion where they just hold it all in. If the lights are too bright in school if they're distressed through noise or through friendship difficulties whereas some children will outwardly say I'm finding this tricky or for children that mask they won't express that. But then there's also the social camouflaging aspect of masking where children will put on a performance and act to basically try and fit in with their peers or with whatever group they're amongst. So they will mimic people around them. They might copy mannerisms, speech. I work with lots of children that very easily pick up accents of people around them so they might start to mimic a particular accent of somebody they're spending a lot of time with. We know that all children have a desire to be like their friends and fit in at a certain age. But actually for these children it's a whole other level. It's a constant focus on what's going on around them and ensuring that they blend into that and ensuring that they're not in any way standing out from the crowds. So it's exhausting and it's constant. Why is it exhausting? Because they're constantly trying to concentrate on the people around them. They're constantly trying to work out the communication. They're trying to work out what they should be saying next to fit in with the crowd. They might be really focusing on what other people are saying and trying to mimic that. So it's very difficult and at the same time they're also trying to keep up with the conversation. So if a group of peers are talking about football they're trying to figure out what everybody else is saying so that they can mimic that but also learn from the conversation as well so that they can fit in better next time. So it's exhausting. It's tiring. It's constant. And also if we put that together with the suppression of emotions they're not actually able to say I'm finding this really tricky because you just talk one at a time or actually the wind's blowing on my face and that makes it really difficult for me to follow any of this. Or actually I'm freezing cold and I don't like standing outside at playtime. So there's so many dimensions that are really playing against each other and making it particularly difficult for an autistic child. And this is something that you've obviously done quite a bit of research about and written about and it's really sparked the interest within my network which is why I couldn't wait to talk to you about it. And I wondered, obviously I think you said that your blog post that you wrote about it which lots of people have read and I think you said that was based on a longer piece of work, your research. And how did you decide what you needed to share more widely what people needed to know and what were you hoping to achieve when you put that piece of work out there? So I'm quite passionate about the concept of masking being out there because for me I work with many, many children that are traumatised from their experiences of masking and also then that obviously leads on to needs not being met. I work with children that are going to be on incredibly long journeys to overcome some of that mistrust in adults around them to overcome some of the trauma that that's caused. I work with children who at very young ages are suicidal, who are self-harming and they have the most incredible families that are supporting them and supporting their needs but for six hours a day they are going into an environment that very much goes against their neurology. So it's the school thought? Sorry? School thought? Not necessarily. I think actually not even not necessarily a lot of the time now it's so there's various different again various different dimensions of it there's not enough training there's not enough compulsory training training in my opinion for teachers around autism in general but particularly around masking in fact I don't know of any particular training around masking I put it into all of my webinars because I think it's important but I'm not sure there's anything specific about masking. Would you run? Sorry? Just inside everyone just just hang on a minute would you be happy to run some? Would you run some live webinars on masking if people are interested in learning more and using that to inform their practice? Yeah most definitely. What does that kind of look like? What do people need to know? Because there will be people watching this saying gosh maybe I have unintentionally caused trauma and there are children here you've said there are children self-harming or who are suicidal because of trauma they've experienced which is presumably not intentional it's just getting it wrong. So what do they need to do? So firstly they need to listen and believe parents the most common thread through all of the messages and emails and comments that I've received from parents is that we've tried we've tried to speak into the GP we've tried to speak into school school say it's a problem at home because they're not seeing anything there we've been put on parenting courses that aren't appropriate for supporting an autistic child so firstly it's just about having that trust in relationship between schools and parents and also parents schools need to bear in mind that if they are dealing with a possibly autistic child they're also working alongside a possibly autistic adult so they need to be aware of the differences in how that parent communicates and that can sometimes be misconstrued as a neurotic over anxious parent and actually having a child who is really struggling at home that isn't having their needs met in school causes a parent to become quite anxious so it's being aware of that, it's being aware that if a parent is coming to you saying this is how my child is presenting at home being curious, being non-judgmental about that having quite often as part of what I do with families is I'll go and do observations in schools on a child and having one set of eyes on a child for a period of time is so insightful just being able to have that whole focus a teacher is unable to do that she's got a class of 30 plus it might be that she's missing some of those signs that a child is struggling if they're masking it might be that the signs are really really subtle it might be that the signs aren't even there it might be that the child has learnt to only be showing some of those stimming signs of distress behaviours when the teacher is not looking so for example I see children that are constantly swinging their legs under the table or the children that are constantly needing to sharpen their pencil just to get up and move to regulate themselves children that are always asking to go to the loo at inconvenient times of the day children that are constantly biting their nails twiddling their hair so lots of these are stimmed can you explain stimming for anyone who might not so self stimulatory behaviour is a behaviour that a child or an adult uses to regulate themselves to help themselves feel calmer so actually all people stim to some level we all might sit and bite our nails from time to time or play with a pen or for autistic children there's a stereotypical looking stim so that child that maybe jumps and flaps for a child that masks or for a child that's less outward in their autism presentation those signs can be a lot more subtle some of them can be very very typically looking so like I said about the child that's twiddling with their hair or the child that sits playing with a pen so this is why it's important to listen to parents because it's almost piecing together the various different bits that are being seen in different areas and what does that look like when you put that all together when you bring all that information together it's and actually another thing to mention important to mention is that sometimes children mask everywhere so I've worked with parents who have come to me concerned about their child's anxiety they seem to have come out of nowhere and what we actually have discovered is that that child has been masking throughout their whole life at home and at school and the pressure and the exhaustion has got so much that they then hit a brick wall and then everything falls apart very very suddenly and it's almost like it's just come out of nowhere but actually it's been sitting under the surface for a really really long time and nobody's noticed it and that's obviously really difficult for a family it's really difficult for parents to get their head around that and come to terms with that so it's not just in school that children mask it can be anyway it can be out and about it can be at parties it can be at sleepovers it can be on play dates it can be in the park for most of the children that I work with it seems to be quite instinctive and subconscious but actually so some of the older children that I work with are actually able to share when you really unpick it and explore it with them they are able to say well this is what I would do at home but this is what I would do at school so I quite often do an activity with children where we talk about how you what you might be doing or how you might be behaving or what you might look like if you were angry sad happy excited and when it comes to talking about these things I always talk about home and not at home or home in school or home and with friends and these children can very much describe how they would respond to a trigger at home in comparison to how that might look if they were in a different setting some children are really very good at that but wouldn't necessarily know that that's that's never been labelled for them they've never been told oh this is because you are masking and this is why and I think it's really important for the children that are able to comprehend that for them to have that level of understanding about themselves because that's important for them managing life going forwards and why would some children mask in some situations but not others what would lie beneath that I suppose some children are more aware so some children are more aware of their differences some children are more inclined to want to fit in they want to be they just want to fit in they want to blend some children I work with have quite high levels of social anxiety so they will be fearful of any responses that they get sometimes this has been brought on by responses that they've had in the past so maybe they've jumped and flapped in the past and somebody's made a comment and said oh what are you doing or laughed so that brings about the social anxiety so some of it is about early experiences and actually I think I wrote about it in my blog how actually adults are not brilliant at not responding positively to differences and I talked about my son who's got really long hair and they come out of comments that he's had about his long hair you need to go and get your hair cut you look like a girl and actually for when it's family members now I tell them off and I say stop saying that to him he's petrified of the hairdressers why should he sit through a haircut that makes him feel really distressed just because of everybody else's thoughts about how he looks but actually the more he is at a young age the more he's then going to feel like well this is how I look is wrong in some way or it causes me to receive comments and attention that I really am uncomfortable with how do people respond when you challenge them on it if it's family they just know to be quiet do you think it changes how they actually kind of think and feel or do they just know that well this is a taboo hmm I suppose it depends on how much how in depth I go so if I'm just to say don't say that then they might go a bit of a taboo if I was to say go into the depth that I've just gone with you about how he finds it distressing then it would reframe it for them I love using the word reframe behaviours and differences to people and parents is massively empowering why is it empowering it just makes people look at things in a different way I quite often talk about pace I don't know if you're aware of pace parenting and a lot of stuff by Dan Hughes about being more attuned to your child and the sea in pace tell us all just because again you have to just assume do google it for more information this is going to be very brief but pace parenting is being playful it's being accepting of emotions and that all emotions are okay and normal and that we shouldn't try and belittle our children's emotions we should just let them be C is curious and E is empathy there's about using that in how you respond to your parents but curious is the one that I constantly bang on about with all parents be curious don't be judgmental about your child's behaviour until you really know what's going on for them so when they're acting in a way that maybe is making you feel a bit cross or annoyed or in a way that you're thinking this is a bit strange it's a bit unusual rather than pointing that out to them be curious like what is it what is that behaviour trying to communicate and actually I purposely wore this t-shirt today a little bit less pushy because actually it's just what we need to do in our parenting or in our teaching or whatever setting we're in we need to be curious all behaviour is a form of communication all behaviour has a function to the child so there's not just some kids are just naughty sometimes I don't think so people might not have their opinion if a child is acting outwardly there's a need maybe it's a need for connection maybe attention seeking I hate to term attention seeking but actually if a child's attention is seeking they need attention so it gives them some attention I think the word attention seeking has got a real stigma attached which doesn't make any child needs attention maybe he's going about it in the wrong way or she's going about it in the wrong way or in the wrong way in your eyes but if that's the only way that the child knows how and how does being curious help with this? because it helps reframe so if we can think okay let's think of a scenario a child that is trying to think of a really basic simple one a child that is refusing to eat their dinner that evening maybe it's a dinner that they might usually eat or so okay so rather than just assuming that their child is being difficult and we're going to battle with them about that and insist that they sit at the table insist that they eat their dinner we're going to say hey what's going on this is something that you'd usually eat is you know I mean let's face it as adults if we're feeling down or depressed or low or anxious some people will just go off their food that's the first thing that they'll do if they're feeling unwell they might go off their food so as an adult would we then want to be forced and battled into eating a meal when we're really not feeling up to it so just being curious with your child and saying hey what's going on for you today this isn't like you are you feeling okay is there anything you want to talk about are you feeling unsettled sad upset cross and just being curious about it if your child then turns around and says well actually then you can work through that with them they're then going to feel settled and then be able to eat their food and that's what you wanted to do in the first place if they turn around and say well actually I ate absolutely loads and had seconds of pudding at lunchtime today in school you might go oh okay so maybe you're just not hungry so it's just about oh never assuming that a child's just being difficult or just playing up and just being curious you know some children aren't able to articulate that and that's a whole other subject and as to how we work with that but even just having that empathy and curiosity about your child can instantly make them feel more relaxed, more at ease somebody's listening to me and enable them to then manage whatever it is that you're asking them to do or manage whatever emotion it is that they're dealing with and I guess this is when we can be curious when we're seeing behaviour that is kind of distressing or challenging or somehow different than what we'd normally expect but the whole kind of entry point for this conversation was around masking when maybe there isn't you know it almost is the absence of that behaviour that we need to be more curious about but how do we do that yeah this is tricky you're saying to us basically lots and lots of people are really really struggling inside and they are putting on a brave face essentially and being on their best behaviour and kind of passing as normal if you like and there's not many signs for us to pick up on so how do we help okay so if a parent is coming to you saying that this is what they're seeing just being aware of masking and that that could be a possibility thinking about whether that could be a possibility and then really if you can get in the child's voice so in order to get the child's true voice they have to feel really really safe they have to be allowed to say things about judgement they're allowed to say things about teachers that they wouldn't usually say about being told off they need to be in a really really safe place to be able to do that sometimes that needs to be somebody from outside of school sometimes there is that one person in school that they do have that trust with sometimes that needs to be with a parent and a parent is then able to share with the school what the child has said maybe through a video maybe through so quite a lot of the children that I work with we produce a PowerPoint presentation so we're going to do a PowerPoint presentation all about you wow all of the things that you love all of the things that you're really interested in okay tell school what you find difficult in school tell school what helps you we've already done quite a lot of work up to this point we're really unpicking some of the difficulties that they're having and that journey can sometimes be quite a quick one sometimes it takes a bit longer but loads of kids love to be doing things with computers PowerPoints and they make things come whizzing in and they find pictures on Google images of their special interests and cover the whole presentation in dogs or whatever it is that they really love and then we simply email it to the school we simply say can this be emailed around every single teacher that comes into contact with these childs this is what the child wants you to know and it's done in the child's language it's done in the child's voice and it's believed and it's like okay we didn't know this is going on for you thank you for telling us thank you for sharing this with us we can we can use this to help you and actually one of the things that's really nice about that is for the childs to be able to provide that information actually lessens their anxiety so it makes them instantly feel safer about going into that environment and that they find tricky because they're like actually this person knows about me now I was never able to verbalise that I was finding this finding this difficult but now that they know I instantly feel better is there no concern that if they've been masking whether that's consciously or subconsciously for all that time I mean presumably they've been doing that for a reason like is it not scary for them to kind of come out if you like about the way they're thinking and feeling massively scary sometimes we do that piece of work over a really long period of time and sometimes we might only have a share that piece of work with one special person within school the person that they feel most safe with so maybe that's a TA or a particular teacher or whoever that may be it is it's not a piece of work done in isolation so we might do lots of work around that around building self-esteem becoming more aware of their autistic identity and feeling positive about that some people might some children might choose to initially share it just with a friend before it goes any further it's not a there's no magic one quick fix it's always depending on the child and where they're at and how they feel but I think it's so helpful if the school received that information and then act upon it and validate it because then that instantly goes okay they've listened they've really listened in it and they're going to respond to that so do you need to do work around preparing people to respond appropriately to make sure it is well received or does it it's something I would like to do it's about building a good relationship with a school and I do have that relationship with some schools not so much others but actually you have to whenever I start working with a family I always say my gold standard is to work with you to work with your child and to work with your child's school because actually we could do loads of work at home we could really change the way that you respond make sure that she's getting lots of decompression time and sensory breaks and actually if the school aren't on board you've still got a child that's coming out of that situation highly stressed and inevitably at some point we'll melt down and is it sometimes the other way around is it sometimes that school is on board and there's maybe someone there who really gets it and that home a lesser tune to it or I suppose in my with my caseload no because parents come to me and they serve with because you're commissioned by parents yes so I suppose that could be different in some cases some cases I suppose I might go into a family and mum's contacted me or dad's contacted me and the other parent isn't quite on the same page so sometimes we do a bit of work around trying to bring parents together to ensure that everybody is on the same page again that that depends on the family and where they are in their journey and you mentioned earlier in the conversation that if you're working with an autistic child that you might be working with autistic parents say more about that yeah so I mean there's a genetic link with autism and so I very rarely meet an autistic child where one of the parents isn't possibly autistic or can relate to the child and their child in some way I actually find that quite helpful if a parent says to me well I can see why he's struggling with that because I struggle with XYZ and I think I've got possibly traits sometimes parents recognise that sometimes they don't and I just like well actually I'm brilliant because you're coming from a place of understanding straight away you know maybe your child presents differently to you in terms of their strengths and difficulties lie in different areas but you have got a really amazing relatedness to your child which means that you can really start to think about how your child may be feeling expressing themselves in different situations so it's actually a strength having an autistic parent of an autistic child rather than just a challenge yeah I don't view it as a challenge at all at all it's an interesting journey to go on if I'm working with a family for a period of time that as you start to have more and more conversations with a parent you start to see the similarities and you can see that they're starting to see the similarities and it's some you know with many parents I've got to the point where they've gone to me do you think I might be autistic and I'm like yeah they're ready to have that conversation and I'm that you don't need to deny them of that knowledge then to yeah I mean you have to judge it, some people have to come to that conclusion themselves other parents I work with straight away and now say to me do you think I could be autistic and then we might have a discussion around that yeah so yeah I mean I don't view that as a challenge at all and do you encourage them to go and actually kind of seek a formal diagnosis and stuff if that's the case or do you just work with them as if autistic and yeah I mean I just work with everybody as to where they are really autistic or not but some parents might say to me I would like a formal assessment and I can talk to them about the various routes yeah some people say to me do you think it's important for me to have my autism formally identified and we might talk through that I think it's you know some parents will ask me about their child and their child having assessments and you know so many parents feel like they don't want to label their child and which I really do try and get them again to reframe because actually you're not labelling your child you're giving your child an identity you're giving your child an understanding of themselves and you're giving your child access to a whole tribe of people that can make her feel welcome and supported and and understand themselves so much better and quite often children that I work with at MASC really labelled themselves they've labelled themselves unsuccessful failing, stupid lazy different but in a bad way weird but in a bad way so actually sometimes it's about removing those labels and giving them the correct label and then working with them to feel really positive about that so it sounds like part of your work is around educating people about what autism actually is and seeing that this isn't some kind of life sentence but you know I don't know, I always think that there's lots of super powers that come with autism so it's partly about being identified isn't it but not only can you identify with people and it gives you that sense of belonging finally when maybe you felt outside of things but also that there are real strengths, some of the things that can make autism a challenge are also the things that make us able to achieve amazing things when I look on my own career I think some things I've done it's because I have that very black and white in the term and kind of thinking and that rigidity, yeah it's difficult in some circumstances but in others it's a real gift yeah yeah and that's pretty much what I preach to parents when we're talking through assessments and don't assess now do they, like it's not always standard some people just say well we'll support as if autistic but that the process is so long and slow or expensive or what have you done, some LA's actually don't even kind of go there now do they? No it's difficult I mean technically a child shouldn't need a formal identification to have their needs met you know adjustments and support in school should be based on need actually if you're looking at the possibility of trying to get extra funding and resource for a child we know that having that identification formal identification is really powerful it shouldn't be that way but it is it's difficult now I mean in our area you're looking at a two and a half year wait for an assessment and that before lockdown so it's incredibly difficult I always encourage parents sorry that's a long time in a child's life, long time in anyone's sorry you're going to say you always encourage parents to attempt to get on the waiting list sometimes at the stage that we're talking we feel like there's maybe not quite enough evidence to warrant identification of diagnosis but I always say look you're on the waiting list two and a half years if two and a half years time we feel that actually we're barking at the wrong tree which is usually unlikely but then we just pull off the waiting list if we wait two and a half years until we're pretty sure we've then got another two and a half years so is there let me try and work out what I'm trying to say here so my thinking, so I'm thinking out loud here I work with a project called the peace pathway which is about recognising how best to support people who've got comorbid diagnosis of eating disorders or mainly anorexia and autism and part of that project what's happened is that lots of clinicians who are not specialists at all in autism but are specialists in eating disorders have learnt to do the simplified screenings like ADOS and stuff like that in order to try and work out which of their patients because we know there's a high prevalence in that but that we're not recognising yet so they can try and do essentially an initial screen and try and work out who might be benefiting from this particular treatment pathway and I just wonder if that's the sort of thing should it be that there should be someone in every school who's trained in that kind of screening even if it doesn't give the full diagnosis it gives us an idea that for this child there's a clear likelihood I mean, yeah I think that would be massively helpful most classes that I go into I can I think the most recent statistics is one in 54 children I think that's a matter of representation I go into a class in most classes I go into I see at least two children that I think would warrant an assessment in every class because you're just looking for it? do you really think? no I genuinely do I genuinely do I see children that maybe there are other conditions that present in a similar way but either way this child needs an assessment so I think it's I think it would be a valid role within a school but I'm also very much an advocate for this child has a need who cares what it is who cares what it's called they've got an identification of autism that doesn't mean we know what their needs are that doesn't mean well this child's autistic so here we go this is what we give to autistic children so actually why do we have to wait why don't we work with this child why don't we work with these parents and help them unpick what their difficulties are and help them unpick what their strengths are and help them work with where the child is I think that's so important so the statistics are 1 in 54 and you reckon it might be as many as 2 per class so that would suggest that maybe 3 in 4 autistic kids aren't being picked up yeah but now you put it like that it sounds really like a massive statement I'm quite up for massive statements I know that there's a huge unrecognised need there yeah and I think there's so many children that are sitting under the radar so I talked briefly about a child that I spoke to so a child in a class that I was in I wasn't directly working with this child but I'd been in the class for some time so the children knew me quite well and would come and chat and one child that I got chatting to one day I talked to him about if he liked school he's like yeah yeah I like school so I don't like getting ready for school and I said oh do you know why don't you like getting ready for school and he just he looked at me and went it's just putting clothes on isn't it clothes are so uncomfortable this is a 5 year old he had no idea that not every other person in his class finds putting clothes on so uncomfortable these are the children that are going under the radar because to him that's everybody else's experience so it's children like this that you just wouldn't notice and for me early recognition of a child's differences is so important it's so important for their self-identity it's so important for ensuring that we don't hit that brick wall and that we don't end up with priorities around going into school or you know going out and about so how are we going to fix it ooh wasn't it Jodie hang on I need to drink water before I answer that one your gin isn't it how are we going to fix it I mean I could provide you with 5,000 word assignment about how I think it should be fixed I mean personally for me we were talking about masking and we were talking about how much it hinders access to support and identification of autistic children and also I should probably mention children with ADHD mask so if we want these children to be recognised we want these children's needs to be met then we have to masking has to be common knowledge it has to be out there with people that assess it has to be out there with teachers sencos you know even parents need to know that there's an aspect of certain conditions that mean that they don't present and this is one of the reasons why I actually my facebook page is called behaviour support I don't like the word behaviour actually I have parents come to me about their children's behaviour they don't recognise that as possibly being something more if I call myself an autism specialist there will be a whole host of people that wouldn't access or wouldn't think to approach me because they don't recognise their children's behaviour as possible autism or they don't recognise their child's after school Jekyll and Hyde phenomenon mountdowns and they go to school and school say no she's fine here he's fine here and they instantly blame their parents him they would you know that's which you would wouldn't you I get asked about this all the time parents who are just small yeah so I just think it needs to be common knowledge it needs to be a common known aspect of autism of autism and actually having my blog shared around some of the most I suppose I can't think of the word but the most reassuring comments have come from people who I know have got no experience or knowledge or personal contact with the autistic world but they've read my blog and I've gone wow that's really cool I'm actually thank them for taking the time to I think they're probably in their minds has no relation to anything that they do and what are you doing so I think so there's a definite thing there that I would love to commission you to run a like as a minimum a live learning session so people can come if you were up for it and you could teach them so we've covered a lot of it today but I think doing a more you know a more slightly more formal session and where people can come and interact if you were up for it would be really awesome and then I'm interested to know are you writing more or what's next okay so a lot of my writing is actually being done at the moment alongside my daughter so my daughter is 11 she was identified last year and she talks amazingly about masking and in her mind she's like simple like this is what it is how could anybody not get it so she's got a YouTube channel that she talks about various different things on and she's a bit flitty with it so sometimes she puts lots on there and sometimes not but we in lockdown decided to write a book talking about the different experiences so she talks about her experiences of different aspects of her autistic life and from her viewpoint and then I talk about I talk about that bit more in depth and how that might look like for other children and talk about a deeper insight into I suppose so we've got like a piece suitable for the child and then a little bit more information for the adult we would love to have it published and we have actually submitted it to JKP I was going to say definitely not here there's so much more that we could add to it that we sort of we made a really good start on it and actually it could be a finished piece but I'm sure there's so much more we could add to it so I mean this was my first blog I got asked by Libby Hill from Smart Talkers she approached me after reading a report that I had written for a child that we were both working with and said actually could you would you do a guest blog and I sort of never written a blog before and she was like oh you know it's quite and I just went for it so it's a bit of a shock I think it's been read 8,000 times it's been up since Tuesday so and I loved writing it so I think I mean I really struggle writing academically I mean working having Luke Beardon supervise me is amazing but academic style of writing takes an awful lot for me it really is a battle for a real labour of love I remember writing my thesis and just basically having to put long words in it because that's what's expected I've been working on two projects at the same time I was writing for the Mind Dead portal so like the online learning and they wanted you to assume a reading age of about 12 so it was accessible to everybody and I was writing my thesis at the same time and I just happened to get feedback on both on the same day because I just generally write as me and like one was like you need to simplify your writing and don't put more than 8 words in a sentence or something and the other one was put some more terminology in and I was like oh come on because actually the audience is the same it's people right you can be you in what you do I don't think it's a great academic writing though does it yeah but I think there's a question about reference written all over my assignments and I go but I believe it I think it's true so why do I have to find somebody else that feels the same that's the great thing about these kind of platforms you will find lots of people and yeah I guess that's it I just have to think who your audience are and what you're trying to achieve but yeah this is another conversation for us to take offline I think but I would love to help and get your voice more heard I'm aware we have loads of questions submitted and I've been asked all the questions so far so some of them have we've maybe answered but let's do a bit of a quick fire on some of these questions so we had how can secondary school staff help children who haven't had a formal diagnosis yet from Karen Kingston yeah I mean I suppose we've sort of answered this really we're trying to meet need we're not trying to meet identification so work with that child get her into a really trusted space a really safe space and work with them to find out really truly what their needs are and work alongside the parent as well so if the parent is saying actually she really struggles when we go into noisy busy places and school go well she seems fine well actually no don't expect her to go on school trips where it's noisy and busy even though she might look like she's managing she might need support in that area and she might need support with that trip or just an escape route if she needs it so just work with the child and work with the parent and whatever applies at home will also apply at school even if it's not obvious yeah Terry Culkin said can masking be so good that young people go through well into adult life before being recognized or diagnosed as autistic and how much damage can this cause I mean in sure yeah absolutely look at all of the late diagnosed autistic adults so you know there's a whole however many misgenerations of autistic adults so yes definitely damage I think I suppose that varies in terms of the damage that is caused we know that there's lots of misdiagnosed adults that have spent most of their adult lives within mental health services and there's so much research on this there's so much misdiagnosis around personality disorders that maybe are misdiagnosed or have developed as a result of their own needs recognized so the damage can be incredibly dis concerning we know that there's a higher prevalence of suicide rates amongst autistic people there's a higher prevalence of premature death through stress and chronic health conditions so yeah the research is there that very clearly says so the damage is happening stuff isn't it anonymous how many or how often are masking behaviors automatic and you're aware you're choosing to shield behind them basically are masking behaviors automatic or do you choose to shield behind them we maybe answered this a little bit yeah I mean I think I've seen masking in children as young as three I think I've actually seen an article recently that I keep meaning to go back to talking about a six month folder they think could have been so masking behaviors but I may have made that up I need to check that out but yeah for some children it's very instinctive but then we have to consider whether maybe that instinctiveness comes from a survival and it could a survival method because actually if I just blend in nobody speaks to me and I actually find social interaction really difficult because people just fire random pointless questions at me so that learned behavior you just saying about the six month old just took me straight back to my daughter Ellie when she first came to live with us as she's adopted and when she first joined the family she was about six months old and obviously she experienced a massive trauma because the one place where she'd ever been her foster placement up till then suddenly that was gone and she was with us and we you know did everything that we could for her but she was in a completely new home and that was hard and she was you know deeply kind of troubled as a small baby and she's brilliant now but it was difficult and she spent most of her time crying and screaming and being deeply deeply deeply distressed at home you take her out she has just a big smile and when everyone knew would walk into the room she was so and everyone used to say oh isn't she lovely isn't she smiley and our kind of hypothesis around this was that she had been living up till that point in a very busy foster home with a beautiful beautiful family a lady called Anne who had been an amazing care of her but this foster home was generally for teenagers and so there were different kids coming in and out all the time but what I kind of figured was maybe she had learned that when she smiled when these kind of big early teenagers walked in that actually she got a nice response from them and so she continued to do it I don't know it's just always a hypothesis but it was always really marked the difference in how she was out and about and she was really involved in yeah with us yeah yeah you can see how it can easily become a learnt behaviour yeah definitely okay next so I think we've kind of covered this but some local authorities in the school state they will not do private assessments oh no okay so they won't do private they'll only use an NHS diagnosis what should parents do if faced with that okay so I've been faced this quite a bit actually it's so there's something in the code of practice that send special educational needs code of practice and if I remember from memory because I work alongside a lady who's amazing with SCN law and I'm sure it's page 119 of the code practice it talks about how as part of the process of assessing a child's needs that all reports have to be taken into account what's helpful as if the practitioner that you or the clinician that assesses is registered with the body that registers or how professional what is it called can't remember but they're registered with a professional body and that they are following nice guidelines or nice recommendations the send code of practice again it's only a recommendation it's not a legally binding document but a really good website to look at is Ipsia so Ipsia they are experts in law and rights and responsibilities and they I know talk a lot more about this subject it is very difficult local authorities are a bit some local authorities are a bit anti private private diagnosis private assessments in my opinion they shouldn't be I was going to say if there's two waiting lists then you can afford to go down the private route why would you not do that for your child and they're using the waiting list for the people that are then not able to access the private route so just make sure that the clinician that you're using is all the team of clinicians that you use are professionally registered with the right level of qualifications most of the private clinicians now have worked within the NHS and then gone private they've worked within the NHS for years and years so you would hope that they would be recognised but I know that it is can be difficult but my daughter has a private diagnosis and if anybody tried to argue it I would probably approve because it's a very valid and robust assessment and a fantastic report yeah so it's about really being really confident about your child's assessment but then also having a little bit of law in a few policies to back you up a little bit to support you but as far as I'm aware particularly throughout the statutory assessment process for an EHCP I'm pretty sure that the board have to look at everything that's submitted doesn't matter where it's come from that's really helpful and then there's a good question here which actually talks to something we mentioned earlier so this is one saying someone saying as a primary school Sengco special needs coordinator I find it difficult to talk to parents about their child possibly having autism when they have no concerns what would your advice be I would probably start off with talking about the child's needs it's not necessarily talk about the autism but this is what we're seeing in your child and this is how we'd like to support them so coming at that angle it's not something I've got masses of experience of because obviously parents come to me with their concerns so for me it's usually the other way round it can be a difficult process and journey for parents to go on I think possibly like we said because people's of use of autism are actually misinformed and incorrect you were upset when your daughter got her diagnosis didn't you I suppose for me when I first discovered when I read the article and was like oh wow she ticks all the boxes I think I felt sad for her I didn't want her to struggle as a parent you always want your child to have an easy life I suppose and I think because she was struggling so badly at the time I was like oh my goodness this means that life that little bit more tricky I don't feel like that now I feel like wow she's going to have so many amazing opportunities because we are going to always allow her and support her with that but you know you know this yourself there's always difficult patches there's always this big wide world out there that makes life a little bit more tricky absolutely and then I'm going to in terms of the questions here sorry if not everybody maybe got their questions answered but most there's a couple who basically talk to this point of if a child is masking as opposed to just kind of trying to fit in which he said most kids would try and do what are the things that we might pick up on are there any sort of subtle signs that might identify that you know this is a child who's struggling so I would certainly try to do some observations discrete observations of a child look out for very subtle stimming behaviors and I would certainly encourage people to look at there's so much good stuff on YouTube around stimming and different types of stimming yeah doing those observations but getting that child if that child is able to get in that child to a safe place so if a parent is coming to you and saying concerned about my child this is what we're seeing at home getting that child a safe place to talk about that to unpick some of that I think you should be doing that whether you suspect autism or not if you've got a parent coming to you you know bearing in mind sometimes these parents are at crisis before they actually speak out to anybody you should be straight away saying right okay who will this child speak to necessarily have to be the senco or the mental health worker it just needs to be who that child feels most safe with and feels most comfortable with wow we've covered a lot of ground Jodie is there any question that I haven't asked you or anything that you kind of want to say before we wrap up I feel like I should make some big statement now I've got one planned go on fire us goodness actually this is a bit naughty because this isn't mine this isn't my work but this book by Dr Luke Bearden I recommend this to every single parent that I work with every single family it's really accessible in that it's only £7 something on Amazon and it's so easy to read and it just sums up everything you need to know as a parent or teacher in a really easy to read like the way Luke writes is fantastic so I highly recommend this and you know if you are a teacher if you work in a school if you're a TA please just really try and educate yourself around autism and sometimes that means scrapping what you thought you already knew and if you're a parent or a teacher be curious be curious so if we were going to give people one thing to go away and do it would be be curious yeah non-judgmental and curious non-judgmental and curious and give children a safe space to talk about how they find Mrs Smith really really difficult because of XYZ without then being deemed disrespectful or being told off amazing can you talk just very briefly about kind of what you do in terms of if people have watched this and gone I want to work with Jodie she can help me how do they find out more about you and what's that about so all of my I can't manage too many platforms so my main the best way to contact me is via my Facebook page which is Children's Behavior Support Wiltshire and it's a big blue logo with handprints that's the best way to contact me at the moment I think in order to try and reach as many people as I can I'm going to continue doing webinars I'm really enjoying doing the webinars it means that lots of families can access me without it costing them too much and it means I can access lots of families my availability is obviously limited around my own three children so it's a really nice way for me to be able to share as much as I can with as many people as possible amazing so if people go via your Facebook page they'd be able to find out what you're doing yeah all everything I do is posted on there brilliant it's been an absolute pleasure talking to you I think I could talk to you for days we could go on and I'm really thank you for I know you were really anxious about the idea of having this chat and I hope it wasn't too horrible it was you Pukie you're too scary it's been really lovely no it's been and I think that there's so much that you said that it's going to be a springboard and a scaffold for kind of further thinking within our community and I hope that we can we can talk again and we can take forward some of those ideas depending on what people come back with saying they would find helpful but I'm happy to commit now to us taking it offline and looking at booking in a live learning session around masking specifically because I think that would be really really valuable and a great thing to do so I will talk with you about that once we stop pressing record and we'll take that but yeah thank you so much and yeah I'll stop recording now I will stop waffling and I really hope everyone found it helpful and I guess the final thing I would say is I will share all of your links to your Facebook page and Twitter and stuff and people who have watched this or listened to it if you would just go give Jodie some love because clearly I think that you have so much more expertise and knowledge and stuff about you than perhaps you recognise and it would be really good for people to feed back to you what they found helpful here thank you it's really kind of press stop but I'm going to keep talking to you thank you Jodie