 Rydyn ni'n ddweud i'n gweithio'r Llyfrin i'r Gwylfa, a gweithio'r Llyfrin i'r Ffordd i'r Ddwylliannol. Llyfrin i'r Gwylfa yma yn byw yng ngyllteb bod yma eich ffôl fathion, rydyn ni'n ddweud yma i'r amser yn Gwyllteb, am y Llyfrin i'r Unedig, oedd yng Nghymru yn y Llyfrin i'r Unedig. It's an autistic person and therefore very invested in ensuring accessibility and awareness for all autistic people. She is also a social media ambassador for the Student-Midwife Journal and part of the Student-Midwife Board of Elsevere. So over to you Sophie and I will give you a presentation right. Thank you. I just need to find you again. Ope, I forgot you. Falch yn rhan o'r ddysgwm hyn. Fel Hygwr, ddysgwr ystod, nid ymddangos addysg sydd ddim yn ystod o'i arni yn ddigon hynny i'ch gydag nhw'n byw'n trefiau ar ôl i gael ei ddysgwr i Gwyl Brynethol. Rwy'n cwrs o hynod ar y t改, felly ond cos rwy'n ddysgwr i'r ddysgwr meddwl ar y gwir, ac i mi ddim yn eu gwir, yn gofyn arna, hi fod yn amlwg am ymddangos, mae hyn yn mwyn amddangos i ati eu maen nhw'r rhagwyr a ddim yn y trenches i'r pawb. Fy chi'r rôl eithaf dim gofyn o'r maen nhw! Sut yw'r rôl eithaf gwneud yn gwybod, amdangos, ymwneud yn cael eu maen nhw'r rôl yn llyfodol yn gynmanfodi, mae hynny'n gwybod llyfr. Merthyn, hefyd. Mae hynny'n gwneud am rôl erbyn yn yfynol a fy yw'r gifiadau, We're looking like a lot of the diversity of autism here, and someone says a bit about being a diagnosis, especially in women, which I will get onto a lot. So this presentation is not inclusive of all autistic people. I cover some basics and I focus on people you're likely to see in maternity services, so that's autistic women. Many you might not ever know that they're autistic or only learn from their notes. This is because they have learned to adapt to a neurotypical world, which is what we call masking. There's often a debate over whether we should use the term autistic person or person with autism. Research shows that autistic people prefer identity first language, so autistic person. Ross parents and caregivers were more likely to use person first language, so person with autism. In this presentation, I will be using autistic person as that is what the autistic community prefer. The rationale behind this is generally that you cannot separate the person from the autism. It's not something that can be cured or changed, but as with anything, the best thing to do is to just ask people they'd like to be called. We refer to autistic people as neurodivergent. This is someone who's brain functions, learns and processes information differently than others and includes people with ASD, so autism selection disorder, attention deficit hyperactivity disorder, dyslexia, dyspraxia, dyscalculia, dysgraphia and Tourette syndrome. A neurotypical is the opposite of this, so people do not have a neurodivergent condition. So here is a definition of autism from the National Autistic Society. Autism is a lifelong developmental disability, which affects how people communicate and interact with the world. An estimated one in 100 people have ASD with 700,000 being diagnosed in the UK. Defining autism is difficult and ever-changing and personally, I would define autism as a neurological and developmental difference rather than disability, affecting people in a broad variety of ways. Autism can affect executive function, sensory processing and emotional regulation among others. Some autistic people will consider it a disability and some will consider it a difference. But many is resulting learning difficulties, mental health conditions and physical health problems that might make autism a disability. Some people also have difficulty with autism and ASD being used over such a broad category of people with many different functioning needs. For example, a parent with a non-verbal autistic child who requires 24 hour support may feel it isn't appropriate to use the same diagnosis to describe their child. As someone who maybe works and requires minimal support, it's important to note that ASD is wide-ranging and functioning levels may vary at different times, even in the same individual. And every autistic person has their own strengths and weaknesses. So in the UK and across many different countries, we use the DSM to diagnose mental illnesses. It also has a definition of autism. The language has changed a lot from the DSM4 to the DSM5 and some people still identify with previous categorisations. In the DSM4 disorders including autistic disorder, Asperger's syndrome, childhood and disintegrative disorder, pervasive developmental disorder, not otherwise specified, were categorised under pervasive developmental disorders. So one of these is Asperger's syndrome, which people have probably heard quite a lot about and this was previously used to describe, quote, high functioning autistic and was coined by a doctor collaborating with the Nazis. His original diagnosis was called autistic psychopathy. He practiced eugenics in deciding which autistic children he deemed productive enough to avoid being utilised. This term was removed from the DSM5 in 2013 and should only be used as self-identification. Currently the DSM5 splits ASD to three levels based on the amount of support required along with the different things that may be expected of someone at this level. This is disputed widely due to very new behaviours making it difficult to fit people into these levels consistently. We should really consider what the problems might be with categorising ASD into function levels based on support needs. People in the autistic community tend to perceive autism more like this image as a spectrum. So, instead of being a one-point-on-a-line, there's many different aspects to autism and it's a much more three-dimensional concept. We no longer use functioning labels as an autistic community. Instead of being, quote, high functioning or low functioning, these levels may vary and contain many different components. They might vary with time and circumstances and different stress levels. I know for me that my functioning is very much based on the situation environment. Some people also feel that functioning levels invalidate the struggles of those deemed high functioning and underestimate the abilities of those deemed low functioning. Just because autism is a spectrum doesn't mean that everybody is a little autistic. I hear this one a lot. Many people have traits related to autism and everyone will have different emotional regulation, sensory processing and expected functioning. Many people will not meet the diagnostic threshold but equally professional diagnosis is very difficult to access. So we should consider this in who can self-diagnose themselves as autistic. On to women with autism. It's a long-held myth that only the majority of autistic people are male. This is due to diagnostic criteria and the fact that often autistic women will present differently. We, as women, usually have a greater capacity for traditional friendships and are more vulnerable to internalising problems and having increased levels of anxiety, depression and eating disorders. Furthermore, many autistic women and girls learn to mask and adapt and therefore high levels of women are undiagnosed or diagnosed later in life than men, as was said in the comments. Many women who are misdiagnosed or initially diagnosed with a mental health disorder prior to receiving an ASD diagnosis. This is frequently seen with misdiagnosis of personality disorders due to overlapping symptoms. For example, emotional dysregulation being mistaken for emotionally disabled personality disorder. Up to 60% of autistic adults are diagnosed with at least one personality disorder, which really shows the massive problem with misdiagnosis. The ratio of diagnosis between the sexes is narrowing and you will therefore probably meet many, many autistic people in your career as a midwife. As we said, it can be really difficult to access a diagnosis and therefore we should really consider in maternity services how we can ensure that there is a pathway for diagnosis and that's available to people. So, there's a lot of comorbidities that are associated with autism. This is not to say that these conditions are caused by autism or vice versa, but just that links have been noted. Some conditions such as anxiety and eating disorders appear to be much more prevalent in autistic women as opposed to autistic men. So, epilepsy, while 1% of the general population is affected by epilepsy, this rises so much to up to 46% in the autistic population. We should note that some subclinical seizures are difficult to identify in autistic people due to common behavioural traits and if someone with epilepsy is wishing to be pregnant we should always consider my education review. So, anxiety is also extremely prevalent in people with ASJ and this often worsens into adolescence when people are more aware of the difficulties that they have related to social situations. This is also related to poor stress management and emotional regulation and up to 84% of autistic youth suffer some degree of anxiety, so the large majority. Depression occurs in more than half of the autistic population and this can be really difficult to identify or diagnose due to a lack of being here, which means difficulty identifying emotions. So, when screening for depression in autistic adults as we in any way do at all contacts in maternity services, we should pay attention to other signs such as sleep problems, apathy, eating as well as the self-supporting. 66% of adults with autism or presenting to diagnostic clinics admitted to suicidal ideation and 35% previous plans or attempts. There are higher rates of ASD amongst eating disorder populations as opposed to those without eating disorders. Autistic people may be less responsive to traditional treatments and ASD should be considered in the company plans. There's an up to 30% co-occurrence of ASD and OCD, so obsessive compulsive disorder. However, symptoms may overlap such as rituals. The difference is OCD rituals are likely to be ego phystonic, which means they are unwanted or illogical, whilst autistic rituals often purposeful and bring pleasure. When considering all of these high prevalence of mental disorders in autistic people, we should also be thinking about how we can react to that in maternity services. So, offering what are auto-ponies for mental health services, for example, up to 85% and anecdotally more autistic people experience gastrointestinal issues or GI problems. The link between GI symptoms and ASD is widely noted, but it is unknown if autism has any role to play in this either biologically or due to additional factors such as eating habits. Sleep disorders studies have shown that statistically significant differences in levels of sleep problems between autistic and non-autistic adults and children. With all of these as healthcare professionals, we need to be aware of co-morbidities and how to treat these in a way that also considers the helistically autistic individuals, noticing that they may respond to treatments, particularly psychological treatments, differently to neurotypical people. So, autism in the perinatal period. As we all know, pregnancy is a time of great change within a person's body, including their emotions, and we should remember this as this will be even more heightened for autistic people. Due to the sensory processing, they might be hypersensitive or hyposensitive, and minor disorders of pregnancy such as nausea will be much more difficult to deal with, and firm recognitions may need to be made in regards to their care. Although the research of autism in pregnancy is limited, there are many more studies coming out, and these have shown that autistic women and birth and people have been shown to have increased intervention and poorer outcomes, including ayatrogenic preterm birth, electricity section, and pre-eclampsia. So, it's really important that we identify autism in pregnancy and consider why this is happening. Autistic women often have greater healthcare challenges, including healthcare anxiety, communication and emotional distress, environmental anxiety. A study showed 75% of participants didn't disclose their autism with healthcare professionals due to them being uninformed, which shows that we really need to educate ourselves on autism and be a safe place for people to disclose their diagnosis. Due to healthcare barriers, the average living age is much lower for autistic individuals. With better training and awareness, we can make disclosing ASD more comfortable for those entering maternity services. It's important to consider when women can disclose autism. Whilst booking questions in the UK include mental health and learning disabilities, ASD doesn't fit neatly into either of these, and if these problems are present, it's usually caused by ASD rather than vice versa. We should consider having a question about neurodivergency in the booking questionnaire, so it is much easier for autistic people to disclose their diagnosis. Alongside this, autistic women and birth and people are more likely to experience postnatal depression and have increased isolation in parenthood, despite sizing it or rewarding. I really wanted to include breastfeeding as an autistic mother, as this is widely spoken about in the autistic community of mothers. As I said, lots of autistic people have sensory processing problems. They are going to sensory overload when there is a lot of noise or touch that they don't like, things like that. A study that spoke to autistic breastfeeding mothers found a common theme of over-stimulation during breastfeeding, and this was from the sounds of infants looking to the sensations caused by letdown reflexes and sucking with emphasis being placed on sensory overload from touch. Waste-dresed to mitigate this distress from this narrative included eliminating other sensory stimuli such as sitting in a darkened room and wearing nipple shields to act as a barrier between the touch of mother and baby. Alongside these struggles, autistic women also reported hyperfixation as an affect breastfeeding, meaning they weren't grossed in learning about it, although autism can include many difficulties, which I talk about a lot today. It's important to note that autism brings a lot of strength, and this is really themed with autistic mothers who are choosing to breastfeed. We should consider if adaptations to learning and support is necessary, adapting your learning to an individual's needs using visual diagrams and use of models such as a knitted dial and breast, particularly showing inner anatomy may be beneficial to autistic people. Some autistic people will not receive as much benefit from group-based breastfeeding support, so consider if individual support can help them more. Remember that all autistic people are individual and require to be treated as such. Different difficulties will arise for each different person, and we should consider how we can promote breastfeeding whilst recognising it is not suited to the individual needs of all autistic people. I've now got a few slides on suggestions of how we can better support autistic women in maternity services. Many of these things that I suggest will be the best care that we should be giving to all women and birthing people, but I'm highlighting that these are especially important to focus on when working with autistic individuals. My biggest thing that I always say if people ask me is continuity of carer. I think this should be an absolute priority for people with additional care needs such as autistic women as we are increasingly seeing positive impact for continuity models, and I firmly believe this could revolutionise care for autistic birthing people. It would ease communication and help the difficulty and change that autistic people often experience. We should ensure that someone who can advocate for autistic people entering maternity services where they cannot do this for themselves. This could be a family member, a friend, a health or social care professional or a do-that. Wherever possible, we should accommodate these needs and allow this person to be present and ensure ease of visitation is admitted hospital. We need to remember that every autistic person is different, as I keep saying, and try to find out what makes things more manageable for them. Find out how they might present when they experience a sweet overload or a meltdown and how to overcome this. We should think about what are common triggers for them and how we can overcome them. This is another reason why continuity of carer is so valuable in ensuring you're aware of the individual and unique needs of your autistic clients. Change and unpredictability are also often more difficult for autistic people. We should think about how we can make this easier. Examples of this are education on potential scenarios. How a woman's body might change through pregnancy symptoms to expect, understanding the lack of certainty in a due date, educating on stages of labour, including potential complications and explaining the format of appointments to be expected and what healthcare professionals they may meet during their pregnancy. We should also allow tours of the birthing environment, if this isn't at home, to allow them to get more familiar with it and maybe use visual cues and adaptations to allow it. Center-three processing is a key aspect of autism, as I've discussed, and hypersensitivity is common or difficulty in processing centres. We should adapt to these needs and this could be allowing a quiet side room or their own music to be played. It might be accommodating various tactile sensory needs such as fidget toys, weighted blind kits or lap pads. Also important to note is differing pain perception as an expansion of sensory sensitivity. We need to involve autistic people in research. We shouldn't let the barriers such as communication difficulties eliminate autistic people from research into maternity and neonatal services. We should consider alternative forms of communication for the input of non-speaking autistic people and encourage more research into autism in the perinatal period. As I've said, we need clear diagnostic pathways for women and a different diagnostic tool potentially to be used. This includes diagnostic pathways in maternity services, as nowadays most people would not have the slightest idea of how to refer someone for autism diagnosis from maternity. But this is one of the times when a woman is most likely to be in prolonged contact with health care professionals. As always, informed concern and education are vital and some autistic people might want everything explained fully with rationale. I know that's definitely me. Whilst others, particularly those with additional learning disabilities, might need this information adapted. We should make use of resources and signposting using leaflets, posters, websites, videos and charities which might all be really beneficial for autistic people. This might also include technology, so apps, videos, online classes which might be more accessible to autistic people. We should try and keep consistent appointment times and location and consider if home visits might be more appropriate for the autistic person. We should consider forming action plans, for example, what to do if they have a meltdown. Personally, I find flashcards and different coping skills that I can give to people with them struggling and the best way to easily communicate my needs. Place of birth discussions. How can you make birth as stress-free as possible? Think about minimal amounts of unwanted sensory stimuli that we can control. Some autistic women may prefer a less necessary exception due to the unpredictability of labour and birth. However, as always, these should be individualised discussions. As outlined in the previous slide, sensory issues and cognitive functioning may mean extra support is required for breastfeeding. An increased education and breastfeeding support should be individualised by ASD. Forming a feeding can often seem more desirable to people with ASD due to the routine of it and the measurements, so we should consider how we can consider this and still promote breastfeeding. What is that women may interact differently with their child or require additional cues in reacting to their children? There's nothing good or bad about this and we should really delay our judgement on any of these things. We should consider anti-natal education. Are group classes accessible? Would individual support sessions be better? Or could someone accompany the women to anti-natal classes to help them integrate better into the social environment? Birth planning or birth wishes may be very important for an autistic person. We should discuss these and allow them to be creative in a way that works visually for them and ensure that all health professionals that are involved in the person's care are aware of these needs. If you are required to go to data for either an emergency or elective procedure, you should consider sensory input. As anyone who's been in a fit knows, there's a lot of bright lights, there's people moving anywhere, there's a lot of talk and there's machines beeping and this can really cause sensory overload. So how can we mitigate this or allow coping mechanisms in data? We should make sure that adequate mental health support is available, consider a referral to perinator medical health teams and coordinate with any existing professionals involved in the women's care. I also think birth reflection is really important. This is a debrief of the birth experience and this should be beneficial to any autistic woman, whether the birth was perceived as traumatic or not to allow them to understand everything that happened and the different sensory experiences entailed. The most quick, perfect birth might feel traumatic when you experience emotions and senses so acute. We should ensure that there is always a lot of time to explain any procedures, questions and author reassurances when we see autistic lines. We should always remember that autism is a hidden disability and we should never make judgments or assumptions of whether someone is autistic based on how they look or act. If disclosed and consent is given, we should make sure that everyone working with a woman is aware of the diagnosis and its potential implications if there are any. So I'm going to end with this quote. It's from a book called From Here to Maternity by Lara Grant. It says, Awareness of autism is vital for everyone until we have that awareness of difference and of the individualised care, women such as me will still have difficult experiences. And here are a lot of references. I'm so proud of what you do. Fantastic Sophie, thank you so much. There's a lot of interest there on the presentation in the comments. Everybody is saying how fantastic you are presenting for one and also how really interesting all the information is and how people can be using that in practice. Sophie is happy to take questions, live questions. If anybody has any live questions, then she's happy to talk to you. And if you want to post any questions in the chat box as well, I'm happy to present those to Sophie. We'll just use this time to see if... OK, so Bramwy wants to know which study are you quoting when you mention that an autistic person may prefer a section? That's not from a study. It's anecdotal evidence that some people have said. Lara Grant mentions it in her book as well as a study that I did quote relating to elective cesareans being more prevalent in autistic mothers. So just sometimes a mother's preference, yeah? And you might say you might be seeing that in women that don't have a diagnosis of autism as well. Would that be right, Sophie? Yeah, potentially. Obviously no one really knows what will happen in labour and I know I've had anecdotal evidence of the uncertainty around a due date being quite distressing for autistic people who we often like routine and knowing what's going to happen. So some people prefer that, but equally many people won't. That's really interesting. Looking at the research and the references that you've got, if you go on to those slides, are you able to give us an overview of any particular research that we should really seek out if we want to know what's the most up-to-date evidence-based practice that's going on? Most, well, most of the ones that are recent, anything about autism impregnancy is pretty up-to-date research because it's only recently been explored even since Ryan's presentation. So many more studies have come out. So I think it's just important to stay on top of all of that. Obviously these references include things that are widely around the subject of autism rather than being particular to pregnancy. And if anybody wanted to list of the references, it would be okay for them to send you an email to ask for that, but it's okay. That's absolutely fine, yeah. Fantastic. If we just use this time that we've got, if we just go back and just talk to us a little bit more about what you would consider to be the most important things that a midwife would need to know about supporting a woman in birth. So during birth, we should consider the different sensory sensitivities that people have. So as well as ensuring we eliminate a one-sixth sensory stimuli, we should also think about how they might perceive pain, if they perceive pain more strongly, or are less aware of pain and feelings going on in their body. As I say, I think that continuity of care will be really amazing for this as we can understand how the person presents what in their stress, for example, shutdowns and meltdowns and how we can adapt to that. We should probably consider how communication can still be allowed even when there are, I'll just move that, sorry. Even when they're in a shutdown and the autistic person can't communicate through words. That's great, Sophie. That's really, really helpful. Just check to see if there's a... Yeah, no, that's fine. And then can you talk to us a little bit more about particularly about communication when you're supporting an autistic woman? Can you talk to us a little bit more about what you would do to really individualise her care plan? So it's all about getting to know that person. We've probably all heard the stereotype that autistic people don't like eye contact. That's sometimes the case. So don't foresee things. Allow them to communicate in a way that is comfortable for them. So if they're not offering eye contact, it might not be a sorry that they're not interested, but probably more of a sign that they take information in better if they aren't doing so. Which is like different means of communication, some use alternatives. So technology-based communication, writing things down, giving information in a wide variety. So maybe giving education verbally and then also giving them leaflets and written information. Excellent. That's fantastic, Sophie. I just see very long presentation. So yeah, Linda's just saying that the slides will be available along with the presentation. Is there anybody else that has any more questions for Sophie at all? Just give it a couple of minutes. You can either talk to us or you can post the questions in the chat there. You can see Ella's typing. Or just see if there's a final question that comes up. A couple of people type it. Or just see what comes up there, Sophie, before I go on to the final slides. Yeah, that's fine. I'm at the University of Leicester. I don't know about other courses, because obviously we also have had with the nursing courses of the Presidential House. So I assume they get more education. I personally delivered the education on autism in the perinatal period to my cohort. And they're really keen on working with me to get a sort of Black North to use that for the voice of an autistic person in speaking classes to the cohort. Great. So can you suggest anything in particular, apart from the brilliant things you've already mentioned, about how to support or prepare an autistic partner during birth? That's a great question, Sarah. Thank you. I've genuinely never thought about that, so I think that's really interesting. I think this is where COVID has probably really struggled as well, because we don't always see the partners. When you have that holistic and relational care, you can get to know them and be able to offer any education. Maybe... I doubt we even know how many of the partners are autistic, because we don't ask that many questions about partners. So it'd be interesting to think about that and how we can adapt needs, allow time to walk away if they might need to during the birth process. Things like that. That's great. Thank you. Have you written a journal on this subject, Sophie, PSM or TPM perhaps in midwifth? I'm working in collaboration with a never-autistic lecturer and a never-autistic student midwifth on some pieces which we hope will come out in the future. Keep an eye out. That's great. Thank you, Casey, for that question. Fantastic. Yes, absolutely. Do you have any strings on it anyway? OK. Oh, Ella's typing in. I'll just see if there's any more questions up. Which journal, perhaps in midwifth, do you say, Sophie? Yeah, we hope the first one will be in the perhaps in midwifth. Yeah, the perhaps in midwifth. OK. I'll think, I'll close down the questions now, and then if you need contact Sophie, her email address, I'll put that in the chat box for you again. And I'll just go through to the next slide.