 Diane's been is the midwife has been a midwife in the UK for the past 14 years. She has been working with the NHS Aside from being a midwife She's interested in creating awareness about autism and which is not surprising she's going to tell us How she's going to do that and how the promoting of autism awareness in midwifery practice is very very important She's going to take us through that Aside from that Diane Baines Is interested in hypnobutting which is a form of having to allay fear and anxiety in the moda In an attempt to promote her physical and emotional well-being She's also a hypnotherapist, which is a form of alternative medicine by using keeping using hypnosis and then She's also interested in Reiki, which is a form of energy healing Welcome Diane Baines to the virtual International Day of the Midwife Need to give you the rights Right, that's great. Thanks, Lima. Hi everybody. Welcome to a presentation. Thank you for tuning in So I'm going to talk a little bit about promoting autism awareness in midwifery practice I'm just going to give you an overview of autism I know some of you will be aware of it and some of you won't some of you will have Experience of it and some of you won't I'm just gonna give you an overview of the Things that I think is quite important for you to know as a practitioner as a midwife and give you an idea of some of the techniques that you can use to help support your women that You'll see you're having babies and also helping them on their initial journey into motherhood as well So the topics that I'm going to cover are an overview of autism presentation specifically in girls and women Also, I'll cover a lack of diagnosis and what this can result in which is the manifestation of subsequent mental health issues in women and Then I'll go on to the impact of the lack of support That this has on women's ability to hold relationships and to understand what the relationships are and How this affects the family planning choices that they make Which is obviously where we come in and give support I'll discuss an overview of Masking techniques that are used by women to try and Cope in day-to-day living and how this manifests and how as health practitioners that we can spot these issues and Then I'll discuss about how to support and advocate for these women throughout the journey how birth and then also How we can raise awareness of autism in our own workplaces and in our own community And also for some of us among our own families as well once we have the extra knowledge So I just want to give you a really easy visual that When I'm talking about autism We now understand that there are a whole a whole spectrum of Learning issues that affects lots of people all over the world and some countries have worse for all of these issues And some countries do not So some countries might have things like tension deficit disorder autism and Where some countries might just see individuals as not quite fitting in and to the expected norms of behavior usually from childhood and so we're looking at Leo Kanner in 1943 he looked at children and basically he started to see that there were Issues within children that really didn't fit the model of mental health diagnosis such as schizophrenia and bipolar Etc. And his further research led to his name being given to that research and then from there These children were able to access support and then research grew from there And so that's nearly 80 years ago and we're still now Developing our research within the spectrum of autism and within the spectrum of learning issues So if you're in a country that recognizes autism great, how is your country responding to it more? Importantly, how is your midriff service responding to it and recognizing it? And if you're in a country that doesn't even know the word autism yet then Once you've got an awareness of some of the issues that can be apparent then You might be the first person that says actually this person might have autism How can we support that within a midwifery context? So I just want to draw your attention to the statistics that by the age of seven Which to be fair some children will have autism. That's very obvious such as non-communication not meeting milestones Depending how your country looks at child health And usually by the age of seven our ratio of diagnosis from boys to girls is one to four So for every one girl You'll have four boys in a classroom for example that have been diagnosed So the importance of that is to recognize that Only one girl has that support in place Whereas the four boys they have all that support in place all through their schooling and then through to their adult life that recognition So there'll be three girls as you can see by the Statistics by the age of 40 the ratio is shown to be more even so we thought traditionally that autism was more of a Boy issue But actually the research is coming out especially in the last few years is suggesting that actually Girls have autism too as much as boys, but girls are better at covering up And boys just can't cope given an environment such a school where there are so many expected social norms Then it's as physical aggression and that's what's dealt with rather than the underlying issue So there'll be girls that we come across as Childbearing mothers who might have some of the characteristics of autism that I'm going to discuss with you But I've never had a formal diagnosis Never had any support in place and might not even recognize themselves that have autism or that's why this may be Struggled in some situations throughout their life And and then there's a big thing now in the UK more and more women in their forties are actually getting diagnosed with autism And because of this growing awareness So it's just something to bear in mind that when you're interacting with ladies, they might have autism But they've never had an official diagnosis So I'm going to go to a word that is New Zealand In our region and it's from the Maori language and I know there's a coupler out there from New Zealand's way and Apologize my pronunciation by going to say tacky one tanga And and this is great. This word if you don't remember anything else from the presentation take this word away with you So in New Zealand They have a luxury of not yet and have not yet having words for certain Issues and autism was one of them. So the guy that was put in charge of developing the new words for autism in the Maori language Fantastic and he did a little news piece and he said when he observed people with autism he recognized that they had their own timing their own spacing their own pacing and their own life rhythm and So he came up with the word tacky one tanga, which means in your own space and time and That really does epitomize what autism is Basically, you've got an individual that is got their own way of doing things their own timing their own understanding and They find themselves Especially here in the UK having to constantly fit into social norms that cause them a lot of distress and then what happens is they're Their mind kind of wants to shut down and then he's not able to process or not able to interact with the world around them So in their own time and space is a really really good definition of autism and then this particular official went on to say that and He specifically chose words that Put a positive spin on autism So he was focusing on the ability rather than disability to ensure that terms are non-judgmental And I thought this was fantastic because here in the UK We talk about disability and we talk about all the learning issues that People have as disabilities Whereas truthfully it really should be seen as just another way of looking at the world and Increasing our tolerance and To not everybody fits into a way that we think we should be and we are having lots of tolerance with other issues such as gender In the world. So why shouldn't we have this tolerance with learning issues as well? So this is a really good graphic which talks about autism spectrum. So autism has Lots of different kind of nuances and definitions within that one title of autism You might have heard of autism spectrum disorder ASD This has come about because we used to think that autism was linear So you'd have say starting point here if you can see with the cursor where you'd have someone that was Non-conversant kind of mute and then all the way up here You'd have someone as able to socially interact and then he had what appeared as some superficial issues But that's kind of being put by the wayside now and we talk about autism spectrum. So people can have and some Speech issues for example, but be highly intelligent as they used to think someone who can't speak didn't have the intelligence there as well and depending what country you're from then your National psychology will still think about things in a different way along that Along that spectrum So we have our classic autism which is can is who's already mentioned Leo canna who first came about with let's observe children rather than just giving them Psychological labels such as schizophrenia Let's actually observe their behavior then came about with actually there they have not got mental Incapacity it's actually a learning issue or an environmental issue And I would say the best way to think about that is with someone with autism You they are a square peg and you're trying to make them fit into society so trying to make them kind of fit into a round hole and You wouldn't do that normally, but we seem to kind of want to do that with our children some time especially in the UK and especially within our current Education system we want to Try and get all children to Perform the same and be the same in the way that they have that Attitude but that's not always the case And that's not necessarily the best thing either for their mental health And then we also have Asperger's syndrome, which you will sometimes hear referred to as high-functioning autism and So in that category you'll have people That may have average or both average intelligence and are able to interact socially to some extent but actually underneath they're trying to Go through the issues that they've occurred during the day and make sense of them and they might appear that they On the outside that they're coping well in a social situation Actually, all the things they're having can be quite overwhelming and then you've got pathological demand avoidance Which you might have heard of or you might not have heard of at all Pathological demand avoidance is considered a form of autism where an individual will be motivated by anxiety mostly and they will like to have control around them so any kind of demand Can interfere with their sense of self and this can manifest as outbursts or meltdowns and this is one that might be really really Personate to midwifery because you might have a woman that you're looking after and you think of course She's not really interacting or she's being really Obtuse or she's being really argumentative to everything I'm discussing especially in labor when they feel very vulnerable And you could actually ask yourself or has she got this pathological demand avoidance is every command being met with negotiation and then oh actually and I think she might have that let's approach this in a different way and Once you've got the heightened understanding of these issues when you're looking after your women It can really improve the holistic way that you care for women so classical autism and You can have levels of severity with that. So what kind of things are we looking at? We're looking at things like ability to interact socially social communication impairment imagination impairment and repetitive activities So You could have someone that's quite aloof and indifferent so from a midwifery perspective your patient isn't engaging with you They can't maintain eye contact. It feels like they're not really listening to anything. You're saying but these are Issues that are powered because the social interaction to them is really overwhelming if you're looking at Somebody who has autism in the face and you're asking them directly That can be so overwhelming that their capacity to deal with the situation is just they're going to shut down mode and Then you can have people that are able to socializing groups but they need some Formal support within that as well and then you have social communication impairment So you can have a variety where people can't communicate at all Or they might have selective mutism to people that are really Talk a lot and they don't have kind of the social cues that actually their companions might not be Listening to them or actually it's now time for someone else to have a little talk in the conversation and then also You can have imagination issues where they might have limited play They might have isolated play prefer to play on their own and they might have Certain objects that they like to Play with we call them here in the UK fidget toys and stim simulators like something with a click Something like it's got a click on it Fidget spinners and children will sit and play with those It's quite commonplace now in the UK in school settings for children to have these And it helps them maintain control really through that social situation And then repetitive activities and you might have someone that has repetitive Issues they might do rocking issues and that's a self-soothing issue and then you might have people That have particular interests Things in particular that they know about Maybe for boys. It might be something like trains that they're obsessed with trains and so Going back to autism spectrum and the ASD that we refer to so this is a really helpful graphic So you're looking at people there could be anywhere on here just like anyone that Doesn't have autism or is nor a typical as we say it could be anywhere on here So you could have someone that's totally mute doesn't speak at all But actually they're really intelligent and their executive function is really high. You could have someone with sensory issues Who doesn't like loud sounds? But their perception of what's happening around them is really quite high. So this is a really good visual and then going further through to Aspergers high functioning autism as we've discussed already and Someone with a both average intelligence. They have less speech issues. They have language processing They do have a high sense of anxiety They can be overwhelmed and often this can be misdiagnosed from mental health point of view as depression anxiety especially in young young girls and but it's not it's under underlying underlying issue of autism rather than the mental health issues and here and you And it does seem to be more of a focus on the mental health side rather than Oh, actually this child might have autism. Let's support them with that They can find every day interactions really hard They can find building rapport in a social situation quite overwhelming and there might lack of a way Cues within a social situation as well and then most Importantly for us to be aware of this life is that they have sensitivity to sounds taste texture smells touch and light so they for a normal typical person they could be in a room and For someone with autism they could be in a room They could hear maybe lots of noises going on their hypersensitive to noise can be overwhelming for them if they Then have to like sit and eat in that situation and the food and the texture of what they're eating They don't like and then again that can be overwhelming for them It's a century issue rather than a like issue and then also there might be Find a smell somebody else's dinner if they're sat at a table quite overwhelming all these things are over stimulation of the sentences And and so it can lead to like what we would call maybe a meltdown And we also refer to that as the coke bottle effect So if a child for example has been at school all day, they've been trying to fit into a situation They can't articulate they haven't got the words To explain their Inner feelings then they'll come home with a parent typically they'll Explode like a coke bottle as once they get home. They feel safe in their home environment and Then again as we discussed the pathological demand avoidance So this will be someone typically who resists ordinary demands of life So not uncommon for them not to like to brush their hair or clean their teeth or even Be active in self-care of washing themselves They'll use distraction excuses renegotiation To get through any heightened anxiety issues and it may appear sociable, but they lack the understanding and They can have excessive mood swings and impulsivity And their behavior can be focused on other people This is one in particular that I think has mid-wise We might see in our women and we think oh, you know, they've got a psychological issue Actually, it might be that they've got pathological demand avoidance. They've got autism, but they've never had a diagnosis to work with What can we do to help these women? So strategies for PDA and for autism? What can we do in our society, especially in the UK? We expect people to conform to social norms and throughout school throughout education and within the workplace and What we need to do with autism children with autism is give them that Tacky one time there. They give them their own time. Give them their own space Don't expect them don't overload them with demands. So this is what we can do with our women with autism, especially through their Labor and also in the anti-native period as well be flexible with them Build relationships with them. Give them the extra time Is it really overwhelming for them being in a waiting room? So by the time they come to see you, they're so overloaded They don't have any ability to articulate any of the questions that they have Or during your routine anti-native clinical appointments. Could you be flexible? Could you see them at home? Could you see them at the beginning of clinic to take away that stress for them even having that conversation with them? Will help them think of this person that understands some of the things that I'm going through and already initiates that Relationship on a much higher level than you would normally offer the individual choices Do they want to Have one particular midwife can can you offer them continuity of caring your current role in your current model that you have where you work? and Also, choose your words carefully. So people with autism might think very literally so if you have a conversation about something and They will not appreciate kind of subtle nuances or Kind of subtle jokes. You have to be very literal and and you have to have that Understanding relate back to you that they have understood what you have talked about and use humans You can try and always remain calm. It might be you think cool. They're not listening They're not doing about as I've asked them especially in that labor environment You might think all they're not behaving as I want them to behave or as they should behave Then try remain as calm as you can and that will in itself just give them an extra time the extra space and That will allow them to think this person is is with me And it allows them their brain just to calm down and then react More progressively and try and reduce any direct demands And this is something that is you have to really think about so if you're talking to somebody say and And you want them to in labor Assume different positions or do something just say you have to kind of say would it possible for you to go to the toilet now? Would it be possible for me to and do an examination? Try and avoid any direct commands and because then they might initially be be met with resistance So again as we've discussed specifically in girls We're looking at what we're calling here in the UK now a hidden gender these girls Unfortunately, I'm not being diagnosed and not got the support that they needed at school And then they've gone out into the world and in and into adolescence They're not too secure about making their relationships And and it makes them especially vulnerable and and then they come to see us as young women pregnant and sometimes in quite a vulnerable relationships and So what are we looking for in girls in school setting and within that midwifery? So we're calling them say the hidden gender So the presentation in boys And maybe they'll have obsessions things like that be quite obvious who's in girls not so obvious They might have an obsession with the latest pop band But they're able to fit that in with the social norms. So it becomes You're often here teachers say all they fit really well in class and it's apparent Raises an issue, you know is autism an issue with my child teachers will say all they fit in class. They're really helpful and but they're actually Seen on their own it looks as though they're around people and they've got all that friendship group Actually, they'll be on the periphery of the friendship group and the teacher in a class of 30 children has got actually able to see that fully and Then obviously by the age of seven or eight as children trans trans As children go into them Pre-puberty basically then these issues become more of more obvious So we talk about girls having masking techniques So a foreign peer trends and that urge to fit in and they'll copy behaviors and then you lose a sense of their true self And basically that can lead them feeling exhausted and overwhelmed and these things are all the same if you're looking at a mother in Pregnancy she's she's acting like she thinks she should act she thinks that she should be happy about being pregnant She thinks that she should be bonding with her child. So these kind of things and Sometimes a little bit of a struggle with for women with autism. So symptoms of autism. I love this graphic Let's talk about all the positives. So someone with autism never gives up. They're a loyal friend Trustworthy and dependable. They're a true seeker who wants to do what is right? They're caring and fatic sensitive and creative their abilities to hide hyper focus and analyze and systemize and They love details. They notice patterns others may miss They perceive the world in a unique way They're passionate about ideas and solving problems and they have an amazing long-term memory They can share the information So used in the right way, we have two really strong Exponents Greta Thunberg who's had a lot of coverage this year and she's been a fantastic role model for girls with autism aspergers and she's been very open that she has aspergers and that makes her who she is and she Epitomizes really that she sees the world in a different way She works raisin wellness of climate change and she's made such a massive difference to everybody and She Epitomizes what autistic people see is that they see a truth underlying truth that other people can't always see and Temple Grandin some of you may have heard of she's a big exponent of autism in the US This books are really good books a really good starting point for anybody that's interested is available on audible Really accessible and it talks about her childhood growing up with autism and actually how she's been able to become very successful With those traits in the workplace as well So we'll revisit our one to every four boys diagnosed And we are looking at our Looking at our girls that do not get diagnosed. How can we support them in midwifery? So lack of diagnosis might lead to subsequent mental health issues and So these money might manifest all the way through childhood and adolescence So when these girls come to us, they might have inability to recognize someone's ulterior motive in a relationship So it makes them More vulnerable to risk of abuse and exploitation Mac seagulls that have had substance misuse drugs and alcohol and they're not making very good relationship choices and Not making good family planning choices Because they haven't had that extra social education about Making good relationships and also making choices about their health and and their Reproductive health as well Just practice point right at the end and then we're we're finished with the presentation is that Just imagine you've got A lady called Jill she's comes into hospital to live her first baby and she has autism She likes her routine and gets very anxious in new places and around new people She's never met her midwife Helen came into the room forgot to introduce herself She switched on all the lights which as she told Jill She was too busy to look at her birth plan and would just do what was needed to get the job done Jill and she told Jill she needed to move things along otherwise her baby might be very poorly or die as Her blood pressure was too high We all know there are lots of issues with that kind of a midwifery care But it can happen. So how would this make Jill feel? She's feeling Out of control. She's got no safe place She's feeling very anxious very scared and confused and quite rightly so but she'll be feeling this to an Extortion extent where a whole senses are overwhelmed and for Jill this might manifest as really extreme reaction to situation And it will have poor outcomes for her and her baby What could the midwife have done differently? Well, what can we be doing for these women? What extra care can we be putting in place in our birthing units? Introducing ourselves offering tours of the room or the unit prior to admission So that can alleviate any anxieties and fears whether women know where they're going to go We can offer them a pre-birth plan Going through that with the midwife or a midwife that might be looking after them in labor but having awareness of The effect of light sounds smells voice tone and touch and any demands for that whole interaction of labor Outlining a clear plan of care with the patient before they come into hospital and having no direct requests or demands and Thinking that autistic women can think literally so being told your baby might die She actually might think that her baby might die and that's not something that anybody wants to He or keep repeating You know as they go through that journey of motherhood and here in the UK. We have lanyards with Some flowers on for autism awareness. They started using the mini Heathrow in the airport Showing people that needed just a little bit of extra support going through the process through the airport So could we introduce something like that into our health care systems here? So we have a lanyard or wristband that shows all health care staff that people need extra support with what's happening to them Also in the UK with it. We have a health care passport as well Which is bought up by the National Autistic Society And that gives an outline of what each person needs extra to help there Help their journey through the health care And I would advocate you all to watch them this lovely short film by Disney called float It's a very short film about six minutes and it's done by this guy Bobby Rubio based on his own relationship with his son with autism and if you watch that film You'll have a little bit of an idea about what autism can do for a child and how it affects the parent and the relationship as well And I've put that on my Facebook page as well if you want a quick link to that and then the resources here in the UK National Autistic Society Temple grounding books and the autism toolbox Which is a website from Scottish the Scottish NHS? and some really good talks on Ted talks on autism and Sarah Hendricks is somebody that I would look for on YouTube as well and Then I just like to say thank you very much for your time It's been a very quick overview there if you need to know any more information just contact me in Facebook Or email me not a problem at all and I think Halima is there. I'll hand back over to Halima if you're there Hi Halima Hi there Yeah, thank you very much for that presentation Well who would like to take questions from the audience though we have very short time for us to take this question We have just five minutes for us to end this session Then we'll go to the next two groups where another presentation is coming up Today, are you happy to take questions now? Yes, that's fine Yeah, yeah, if Before the question comes in if I may ask Can you you mentioned something about the NHS health passport? Can you tell me more about the NHS health passport and how it is used to support people with astronaut degrees? Yeah It's the National Autistic Society that have developed it which is a charity here in the UK And basically it's a little Page document and it gives an insight into the individual that's been treated for the in health care And There was a young lad who had autism had underlying Health issues and unfortunately because the staff weren't really aware of his autism how that manifested for him or how they could support that And he actually died and his mum has been a really good advocate about bringing forward this issue and As lobbied the UK government and as a result of that the UK government this year Announced that all health care professionals It's compulsory for them to have autism training and for all health care students coming through and midwifery students That it is in compulsory for them to have training on autism in their in their studies and the health care passport Is a four pages document and it just gives a simple overview Of what the issues are for this particular individual and how health care staff can support them and what they like and don't like And also That is being transferred over to the education setting now as well And it takes away a lot of that Where family or parents will have to advocate on a child's behalf It will be written and put in the medical notes and it can be used by medical staff um And some people wherever in the UK and some people aren't and more people need to be using it more to support our um Our children and our women in midwifery That's quite a good arrangement. Thank you very much. Diane I want to ask one very important thing before we go. Um What treatments do you think a midwife should be aware of when supporting A child with a special a woman with autism and labour please They need to be aware that um that we are with every woman that they are the individual who needs to treat them as such Um, but with women with autism, they might not be able to always articulate everything that they need So really I would specifically say let's show these women the room where they're going to be delivering their babies Let's talk about home birth options as well Um, let's think about um interaction. How do they need the lights? How how do they need? Everything in the room ask them. What do you need us to do for you? How can we facilitate your birth? And also have the um kindness and understand that they might not react to things as you expect them to And their underlying um emotion might be anxiety driven and how you can support that as well I want to say thank you very much Diane for this amazing presentation. Thank you, Halime