The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Understanding Consent and Sex Education with Niamh Mellerick
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In the latest episode of the Middletown Podcast we chat to Niamh Mellerick from AsIAm about their recent report focusing on consent and sex education in Ireland. They collaborated with the Dublin Rape Crisis Centre and the Royal College of Surgeons in Ireland to learn more about how autistic people learn about and understand consent. Niamh shares their findings and practical ideas to support an understanding of consent for young people.
Setting The Scene: Why Consent
SPEAKER_00Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown, and I'm also Autistic. In this episode, I'm talking to Need Mellarick, Director of Operations at As I Am. We're chatting about some very important research that As I Am conducted in collaboration with the Dublin Right Crisis Centre. They explored experiences of consent and sex education for young autistic people in Ireland. We chat about the needs that young autistic people shared and the challenges that parents and educators might face in the area. At times we do discuss some difficult experiences that young people shared, but Neve is so sensitive and practical in her approach, and the work is very much focused on how we can learn and improve things as a community for the community. She's so passionate about her work, and I have the conversation feeling very hopeful for the future. I hope you enjoy our chat. So, Neve, it's so lovely to chat to you for the podcast. I wanted to start by asking you about the study that was conducted with As I Am and sort of what was the background to the study and why did you want to do it?
SPEAKER_01Yeah, absolutely. And of course, firstly to say thank you so much for the invite.
Partnership With DRCC And Aims
SPEAKER_01You know, if we think internationally, it's been quite consistent in that we know that autistic people are facing significantly higher risks of sexual exploitation, of assault, of abuse when we compare to non-autistic peers, um, where there tends to be the misconception and the myth, and I'm sure we'll get into this more in that it can often be misunderstood that the increased vulnerability is coming a lot more from society rather than the person being autistic themselves. So DRCC, so the Dublin Rape Crisis Centre, would have reached out to us because they had launched their We Consent campaign, which is a fantastic campaign aiming at increasing the understanding of consent. But they had had so much feedback from autistic adults themselves, from parents, who of course might be autistic as well, saying, where can we find materials that are accessible to us? Um and in the spirit of good partnership, they they wanted to progress that, but they they wanted to link with an organization or a body that was going to bring the expertise in that area. And I suppose from as I am's point of view, you know, we really see the value of working in partnership with an organization that again had the area of expertise when it comes to sexual exploitation, consent, assault. So it was um a brilliant partnership from start to finish. And we would have done some initial focus groups to look into the area. Um, and people might know as well, as I am, does our annual same chance report, and that's a state of the community report, I suppose, is the best way to describe it.
From Myths To Rights-Based Framing
SPEAKER_01But when we actually included questions on consent for the first time that year, and it was a valid learning that we hadn't previously, you know, the feedback came back that 69% of community members they felt that relationship and sexuality education wasn't accessible to autistic people. And I think it was 79% surveyed. They felt that media campaigns didn't reflect the experiences of autistic people, and that was very much confirming what we thought. When we went through the focus group, so we did a parent focus group and an autistic adult focus group, and obviously there's intersection there. And our main takeaway was my God, there's so much more to look at here. And we felt that it would be irresponsible to jump right into creating resources, creating workshops, that actually this really needed to be co-created and we needed to hear more and more. And I think it's important to say at the outside, at the outset, when you look at this as a topic, you know, it's not a uh nice to have and that autistic people should have access to materials that are accessible to them, understanding to them on consent. You know, we're looking at this here under a human right to accessible information, you know, under Article 21 of the UNC or PD, which people are probably familiar with. Um, so it's it was not a nice to have. It was this is a right that isn't being met for the autistic community. So we applied for funding from the Irish Human Rights and Equality Grant Scheme, and we were lucky to be funded for a project, um, which we then commissioned for independent research. Um so we partnered with ORCSI then, who carried out the research for us.
SPEAKER_00And are there things that are specific to autistic experience that might make consent more difficult?
SPEAKER_01Yeah, absolutely. Cash, I would I would definitely say so. I think where the shift is happening is there's always been commentary and conversations around why autistic people, you know, might find the area of consent more difficult, or indeed the area of sexual relationships or sexual experiences. But
Autistic Processing, Sensory Safety, Trauma
SPEAKER_01surprise, surprise, they have always been deficit-based conversations. So the commentary would often center on oh, you know, an autistic person might find um understanding consent more difficult because they, and I'm using inverted commas here, don't understand eye contact or don't make eye contact or don't read the social situation. And that was really, really important to me over the whole course of this project, that we didn't come out with something where the onus was once again placed on the autistic person to change, that we weren't looking to find out this is how you as an autistic person can change to make consent more doable. You know, that would be really taking us back in time, and I don't think that would be a helpful addition to the commentary. But I suppose when when we asked the community actually, what are the things in terms of your autistic experience of the world that might be making consent more difficult? What really came through was really about the processing of information. And this was actually a really interesting one for me to think about because I had thought, you know, in my work as an occupational therapist, etc., obviously was always thinking about information processing, but not necessarily in the context of consent. So where you are making a decision of whether you want to go ahead with that sexual act or that sexual relationship, you know, often it might appear that you are able to make that decision right there and right now. But actually, what came through was afterwards when you have been able to process the situation, that actually that wasn't the decision you want to make, and the complexity around that. The other piece that came through very strongly, um, and I think would be more so specific is that sensory safety piece. So, again, previously that's been looked at at a very, you know, deficit-based perspective. But actually, I kind of think about it as all of these things happening in the one time because you can't separate any of them. So if you're already feeling challenged to process the information that is is is in front of you or is being shown to you, and at the same time, that environment, maybe it's whether it's the feeling of the sheets underneath your skin, whether it's the feeling of having naked skin against sheets, whether it's the feeling of somebody else's body part touching your body part, that that is overwhelming from a sensory point of view. That then knocks on further to the processing of information and makes it even more challenging to you know consent in that moment with your your full informed consent. So I think those areas are what we really need to be exploring, thinking about, talking about when it comes to consent rather than these very traditional eye contact makes you know a social situation challenging. Um, because I think we've learned that hasn't progressed us in any way. I think that the third thing I would say that again has been omitted from the conversation is autistic trauma, um, and that the the high state of masking for individuals in these situations, and and I'll touch on this again later, but if if you have gone through your childhood, your your young adulthood, learning that what you need to do is to fit in in order to survive or to go along with the status quo, to not communicate when when something doesn't feel right, that again is going to be tied up in that moment of consent. And consent isn't just a moment, but if we think of it from that context, and I think all of that really comes back to that double empathy perspective of when we have previously talked about the experiences that might make consent more difficult for an autistic person, it has been a neurotypical group speaking about that from their experiences of what they have seen. And again, that's something we wanted to shift the dial on.
SPEAKER_00Brilliant. And I love that it's such a a rich and kind of in-depth approach that that was taken. So can you sort of explain to our listeners how the researchers went about um finding all of this information?
Making Research Truly Accessible
SPEAKER_01Absolutely, and I think we we really toyed between you know the quantitative versus the qualitative and and settled on the mixed method approach, which I suppose lots of researchers do, where we were really keen to get um a state of the nation, I suppose, and a larger sample of what was happening, but also we saw that need of you know building on that data that might come through more so in surveys or as a review of the system, a systematic review of the literature. Actually, we really wanted from a qualitative point of view and a thematic point of view to really get that in-depth perspective. So I suppose what that concluded is is a systematic literature review, surveys for parents of autistic children, uh, parents' guardians, and then surveys for autistic adults, and then focus groups for both as well. I do think it's important to say, because I think this can get missed, you know, the word consultation or lived experience, these are all buzzwords in our sector. We hear them every day, and I think many times every day, and I think we we can tick a box of oh great, you know, the autistic voice was within the research. It was autistic people directly who were interviewed or so on. And it's completely omitted of actually, did you make that research experience accessible for the person? Because how is the person going to give their perspective, their in-depth experience if the environment isn't made accessible? Um, and I think that is such a common failing in research, and that's where I think these partnerships are really, really effective. Because obviously, in working with ORCSI and working with DRCC, we were able to share learning. So we would have really informed in terms of, you know, we need a visual guide before these interviews, um, in terms of the nature of the question, can we take away any of the ambiguity? Because typically with qualitative research, it's very wide open, you know, tell me about your experience. But the feedback we would get time and time again, and as I am, is you know, well, I which aspect of the experience? Uh, how long do you want me to talk for? You know, and and those unknowns, even down to small things, like typically focus group guides wouldn't be made available to people in advance. Um, they would get kind of a broad, you know, we'll be talking about X and Y, and there's this focus on let's really get the insights in the moment. And I suppose it's flipping that narrative of if you want a person to be able to give you their insights, it needs to be accessible to them. So by having those questions in advance, a person is able to process that information, really prepare and feel comfortable in that environment from a sensory point of view as well, to share their perspective. And I think that is important to mention because I think there is so much more now, as there should be discourse around the autistic voice being centered in the consultation or the research. And then this large part can be skipped of actually, you haven't actually adapted that process though in any way. You've just invited the person to the room without knowing what makes that room comfortable and safe for the person. So that was quite critical to us. And this was our third project funded by IREC and working with different research partners. And for me, that's been a really enjoyable part because the way I look at it now, when any of the researchers we work with who are, you know, with DRCC now, in terms of if they're supporting an autistic person, there's such learnings there and ripple effect. And likewise for ourselves, if an autistic person contacts as I am, who's experienced sexual violence, we've learned so much more about that experience as well.
SPEAKER_00That's brilliant. Um yeah, I I was nodding so rigorously as you were talking about the how you you conducted that research because good research practice makes such a difference, and making people comfortable and giving them space to be able to tell their experiences in their own way is so important and so rarely done. So I I get very excited when I hear people talking about it.
What Young Autistic Adults Reported
SPEAKER_00Um so then I would love to sort of talk to you about the different groups that that you spoke to for the research and sort of find out what you found in relation to the different groups. So in relation to the autistic people that you spoke to, um what do they tell you about their sort of experiences around sex education and consent?
SPEAKER_01Yeah, and and the findings in this area are stark. Um, and I'm I'm aware of that for anyone who's listening to the podcast. And when I actually spoke at the launch of the report, and I I wanted to say it respectfully, but they are stark, but if you're in the know in this sector, um, they're actually not surprising. And that's you know, when I share these stats now, it's it is quite shocking that these wouldn't be surprising. So, in terms of the the autistic adults, and I should say it was 18 to 25, so it was young autistic adults we were looking at specifically for this research, you know, the the the findings that came through was, you know, 65% reported to continue unwanted sexual activity due to a feeling of of guilt or obligation. Um, and like I say, that is a very stark statistic and difficult to hear and difficult to understand. But when you link back to all I said about processing, masking double empathy, it shouldn't come as a surprise. And I think it would be, you know, shameful to pretend it did come as a surprise. The other area which was really, really important to us that came through was the experience of school sex education. And obviously, as I am, and many other organizations in the space, you know, work to ensure that the curriculum, as is a child's constitutional right, is accessible to the young person. Um, and I think sex education is a really interesting area here. So, in terms of the sex ed, the feedback that was it was, you know, limited, um reproduction focused, um, and that very, very little attention or minimal attention was actually paid to the matter of consent. And then in line with that, that you know, in absence of that education, that many were seeking information online, um, you know, so including pornography, for example. And I feel quite strongly about this in terms of maybe having worked with so many young people, where there's almost then that immediate judgment of an autistic person for you know um utilizing pornography as an education source. And it really winds me up for want of a better expression, because I want to say, like, what other option is available to that young person? So we know that so many of our autistic teenagers, young adults, are socially isolated. Um, we know the rate of bullying in school, the exclusion, you know, and thankfully that's not something I experienced in school. So all of my learning came from those conversations of saying to friends, like, oh, someone asked me what this means. Will you tell me quickly what that means? And very much figuring out those expressions and and and terms and experiences together. And I think that gets missed when we speak to social isolation of young people, actually, how how how harmful this can potentially be because you're not in those conversations and where you might not be in other conversations, but you think, I can maybe discuss that with mum or dad or brother or sister. You know, consent is often an area that young people don't want to speak about with their parents. So, you know, what's a guy or girl to do? Do you know they are going to have to find sources to enable them in their perception to keep up, to keep along? And then we sort of see such a danger, which you know could be a whole other research project around the misleading sources that may be taken quite literally. And then for so many young people, that their their first
Parents’ Stress And Resource Gaps
SPEAKER_01lessons or um understanding about sex is coming from pornography, and there may not be necessarily a thinking that this probably isn't, you know, what sex is like in real life. Um, what I'm seeing on screen might not necessarily reflect the reality that I will experience. But for many young people, autistic or not, that wouldn't necessarily be there in terms of that contextual cue. So I think that was a really interesting finding that I think needs to be explored further. Um, so I think the in summary, the the two standout there was the the high rate of unwanted sexual activity due to those areas um that I mentioned earlier. And I think I have a chance to talk about further later on as well, and the impact of the absence of quality school sex education as well.
SPEAKER_00Yeah, that makes sense. And as you say, it is it is very stark and it's hard to hear, but at the same time, it's so important that we talk about it because that's how things start to change. So I think the fact that this study exists, the fact that we can have these sorts of conversations is so incredibly important. And then in relation to the parents and carers that were spoken to, um, did they talk about any kind of particular challenges that they found in terms of talking about sex education and consent with their young people?
SPEAKER_01Yeah, absolutely. Um, one of the key areas or key findings was the stress that parents experienced when teaching quite abstract consents, concepts like consent, there's a tongue twister, um, and safety to their children. So, again, you know, if you think of any of the mainstream campaigns you've seen in the last year, and some of them have been so highly effective for neurotypical learners, you know, about whether it's it's like you know, saying yes or no to a cup of tea. And I suppose parents just really, really feeling excluded from those campaigns and those conversations, and just strongly, strongly reporting that there is that absence of resources available, you know, and from an as I am perspective, you know, the resource we have available is our our teen resource as we are. Um, but that touches on consent, it's not dedicated to that area. So that's you know a really important learning for ourselves as well, and and and spurs us on to continue this work with D or CC. So that abstract piece is actually very interesting to me as well. The second part would be around the lateness of the conversation as well. So not knowing when to start that conversation, particularly if the child has an intellectual disability or a learning difference, and maybe, you know, really interested in more what we might traditionally understand as childlike TV shows, let's say Bluey or or whichever, for the sake of the example. And
Educators’ Barriers And Missing Tools
SPEAKER_01but then at the same time, that young person is growing up and their mind is developing, and critically their body is developing as well. But the parent finding it a lot more complex to know when to time that conversation and how to have that conversation in a meaningful way, and then how isolating it is to Google to look up resources and to feel that, I suppose, put in your stomach of none of this was designed with my child in mind. I'm totally alone in this. It's also not a topic that you necessarily might bring up at a parent coffee morning or at the school gate. You might say, God, you have any recommendations for an autism-friendly dentist, or you know, we're really struggling, would you know, a good summer camp in the area? It's a lot more challenging to say, you know, my son is learning how to masturbate and I'm not sure how to support him with that. And what parents also spoke of very eloquently was around that balance of dignity, knowing that you need support with this area, but also thinking from your child's point of view of dignity and respect. And, you know, it's not as straightforward as it is, is just ask the question because you may have a feeling of, you know, I feel like I'm letting my child down by asking this very private thing about them. Um, and then on the flip, you know, how do I open with it? And actually, it really comes back to a very simple question. You know, you would like to ask a lot of change makers. So, where should the parent go in that scenario? And there isn't a neat answer. You don't say, Oh, a speech and language therapist, you know, if they could access one, an occupational therapist, a psychologist, the teacher, there's no obvious answer there. But all the time that there is this absence of an answer and support, you know, real harm is being done and great stress is being placed on family. So, you know, with all the findings that came through from parents and carers carers, what stood out to me perhaps the most powerfully was really just that feeling of stress and that that worry and fear of I'm letting my child down. Here, but I can't even find someone to ask to help me out of this.
SPEAKER_00That's really tricky. And then did you get a sense around what educators would like sort of support with and sort of challenges that they're facing?
SPEAKER_01Yeah, and I'm really glad you asked this question because I think in this discussion, you know, particularly with the strong findings around school sex education, you know, a teacher could really feel who's listening to this or who read the report, you know, what am I to do? I I'm not getting any support or resources with this complex area. So I suppose the the main thing that came through, I suppose, via the parents and autistic adults themselves is their perception, you know, was that educators or teachers are just having huge obstacles to deliver on this from multiple ways. So perhaps within the institution they're working on, where you know they're asked, for example, to approach sex ed in a particular way, um, perhaps in a in a vaguer way or a more
Compliance Cultures And Safety Signals
SPEAKER_01reproduction-focused way. Um, a very powerful example given by a community member, you know, over over the course of the research was around how the narrative in this child's sex ed was if you lie down beside an adult boy, um you will become pregnant. Um and this young person had always you know enjoyed um, you know, in a very appropriate way, like many families do, of a Saturday morning coming in and sitting on the bed, seeing what they're going to do for the day, etc., and then abruptly cease this because their fear was they would become pregnant and that their father would be the father of the baby. You know, so I think when we kind of hear things like, oh, it needs to be concrete, um, it's abstract. It kind of sounds like, yeah, yeah, how harmful could that be? And that's just an example of how harmful that could be. So I think where there's institutional barriers that educators might have a very different view on how sex ed is being taught in their school, but they're not in a position to pay maybe change that on a on a on a large whole school level. And then, you know, we know, and and teachers and parents, and everyone is telling this all of the time, that within initial teacher training and indeed in CPD, that there is a lack of focus on the autistic experience of education, and teachers are in a position where they're having to go and find that information rather than that information is being brought to them. So we do know that. So then a topic as nuanced as consent that doesn't even enter the room, do you know? And I think the only resources that it was felt they could find were perhaps visuals online, um, which perhaps were things like drawings of if you were perhaps teaching um, you know, about masturbation, being the example I used earlier, and you know, a visual support to show that, and perhaps where we can masturbate, where we can't masturbate, but actually it would be um a drawing of a penis, for example. And again, I just picture the isolation that both educators and parents would feel there, thinking there's no way that Jimmy would be able to represent that that cartoon drawing in any way represents him. But obviously, there's a safeguarding piece there, whereas we would usually say, take a picture of the child on the bus to show that the child goes on the bus home. When we come to intimacy and more sensitive areas, they're really complex. And I say that from the experience of working in a special school. And my colleague and I, who was a wonderful special ed teacher, we were so passionate, you know, we could have talked about this area all day. Um, and we ourselves couldn't find the resources, and we're having to be quite dynamic and creative about it every day. Um, so even if you are someone who's so motivated in the area at the moment, there is no emphasis on that within RSE. There is no emphasis on understanding of consent within um teacher
Recommendations: Double Empathy In RSE
SPEAKER_01education around autism. So the the big finding, I suppose, there is there is nothing, for want of a better word, available at the moment to support educators to navigate that, or nothing that is of a sufficient level of quality that our autistic children deserve.
unknownYeah.
SPEAKER_00You awakened a memory from my childhood there, actually, as you were talking, because when I was very little, my folks were very strict with us. And um, I remember my mom saying to me um that I wasn't allowed to talk to boys because I get pregnant and having that moment of like, but are my brother or my dad not boys? What do I do? Yeah, and it's just really confused by it.
SPEAKER_01Yeah, and and the you know, the the understanding of that and how an autistic child might not actually ask then, you know, might not feel comfortable in a class to put up their hand and say, Can I just check I've understood you correctly? Um, because they're not in a comfortable, contained social group that gives them the power to be able to put your hand up and and and not be laughed at because you're you're safe in the social circle, or is so desperately trying to mask within that environment for survival isn't going to engage in the lesson to point out maybe what is understood or or isn't.
SPEAKER_00Um because we've talked a lot about where there are kind of challenges in relation to this topic. But obviously, you know, sexual well-being, sexual identity, gender, they're all very natural, very healthy things. So did you get a sense from the study about sort of uh what the the Irish autistic community looks like in relation to sexuality and gender?
SPEAKER_01Yeah, and I suppose from the the point of view of um how you can look at what's come before and and what we can look to now in the future. So,
Practical Steps For Home And School
SPEAKER_01you know, where there's where there's been challenge, there's opportunity, um, without sounding too cheesy, but I I'd have to say, if I'm really honest, that for me the project was that we are seeing the mistreatment of generations of autistic children in play out in in the autistic person's latter years. And what I I mean by that is if we think of the most popular methods to, again, I'm using inverted commas to support an autistic child that would have been around in the past decades, you know, compliance-based and social skills-based methods. And, you know, I feel like I probably beat this drum a lot, but I really feel very strongly about this one because, and maybe it's the OT in me thinking of sensory safety, etc. But so many of the approaches that are that were and and still are, let's be honest, designed to support autistic children, teach them to go against their natural instincts. Um, and that is so dangerous, you know. And when we talk about compliance and social skills-based methods, we talk about lots of the other dangers of that, and and and my god, they are present, but that is often just not brought into the conversation. And I think you can use really simple examples like a little boy who is thought if he can tolerate the noisy hall for 10 minutes, then he gets a reward after that. So he is sitting in that noisy hall at assembly, and all of his um, you know, his nervous system is telling him, get out, get out, get out. But he is learning, fight that natural instinct, stay in this situation, and you will be rewarded or good things will happen. Um and I think of that particularly in the context then of autistic young people, and it really makes me very sad to think about from that context of we're teaching people to go against their natural safety signals. So then if you find yourself in a uh situation of a sexual nature or where consent is required, all your life, those though you've been taught to don't listen to your instinct, you know. If you're on a date and you feel the mood is off, you know, to think about it must be how I'm communicating. So if we think of the social skills-based methods, not to think actually, it's it's really unusual that that person I'm on a date with ask me that question. It's probably really inappropriate that he or she or they have asked me that, and I probably need to be making my exit fairly soon. If again you've had a lifetime of masking and being thought if there's a communication mishap, that it's you, it's not the other person, it's always you. Then how are you going to read your natural instincts to get yourself out of that situation? And to me, that very sadly really came through in that um feedback from the autistic community, very much a sense of, and of course, you know, this is the sample we we surveyed, and in no way are we generalizing these findings, but that sense of, you know, I worry that I get the situation wrong. Um, and it really was a perfect example of of where double empathy is just so missing. And I was actually, I shouldn't have been surprised, but I was surprised at how harsh the community was being on themselves, if that makes sense, of even though this being an area of interest and enough of an area of interest to complete a focus group or a survey, you know, you you do have to be quite interested to do that. We're all busy people, but really putting the onus back on the person themselves and actually how how they could change. And to me, it means that how an autistic person might enjoy a sexual situation that's different to a neurotypical person, that ultimately it was that feeling of I am the person who needs to conform and needs to learn. So it would be great to see education materials, but those materials might teach me to learn what I need to do. But I think as those conversations evolved, really what came through then was that that very clear and strong feeling, and maybe is why people participated in this research of not wanting it to be the same for the generation of children and teenagers we're we're living through now, not wanting that to be the same thing. And I think there's a really clear way forward there for us, you know. To me, and I say this
Next Steps: Co-Created Materials And Advocacy
SPEAKER_01about many things, but to me, this isn't rocket science. I just think Ireland has such an opportunity here in terms of building that model of inclusive and rights-based consent education and working with DRCC around that too, and other organizations, because I think the dial is shifting. And actually, to do this, to make this change, it needs to be led by the autistic community. And that did thankfully come through very strongly as well. We should be at the center of any of these changes, which again, common sense, you know, uh, don't need to be convinced on that one. But again, we should be trusted to make the changes here to lead on this area.
SPEAKER_00Yeah, that's brilliant. And so then are there kind of specific recommendations that that have come from the study?
SPEAKER_01Yeah, absolutely. And you know, I would say again, most of them do center around that that double empathy piece. So when it comes to the likes of sex education as well, that the sex education not be designed just based on the neurotypical experience, that when we're teaching about consent, we teach about a diverse experience of consent and sexual situations. So we talk about things like sensory sensitivities, sensory seeking, we talk about processing differences, we talk about how, you know, if someone doesn't make eye contact with you, what this might mean in that scenario, but not from the point of view of the autistic person needing to change. Because it does blow my mind a bit. If we're if we're teaching about consent, we're teaching about human behavior. So we can't just teach about one group of humans. We have to teach about the diversity of how humans behave in order for people to be able to, you know, respect, understand, demonstrate consent as well. Um, so I would say the recommendations when it comes to sexual education are very much focused on that double empathy piece, as well as being those concrete resources I would have referred to as well. And also I would say very much recommending and calling out to change makers of that legal and ethical imperative that we have. Um, and it comes back to what I said at the start, you know, these aren't uh optional enhancements in terms of reforms, they're they are our obligations under the UNC or PD. So, in terms of the recommendations going forward, moving away from a nice to have and actually centering this as a rights-based issue that we are failing on as a country currently.
SPEAKER_00Yeah, that's brilliant. And then my my very last question for you is um if a parent or teacher is listening to the podcast, what can they do to support their young people to have a healthy understanding of content?
SPEAKER_01Absolutely. And I think this is probably my favorite question because I hate the thought of any webinar or or anything where a person thinks, you know, very nice to hear that research, but what do I do today to make a change? And also I'm very mindful of if a parent is listening to this and you know wasn't familiar with those statistics, that could actually be left with a growing level of fear. Oh, this is another thing I really need to get right. And likewise for an autistic adult listening to it as well, to you know, to be recognising these experiences and and the feelings around them. So I love that we're we're ending with the, you know, what can we do in the day-to-day? I suppose from my point of view, you know, when we think about sex ed, you know, late primary school, early secondary school, that doesn't, I'm a logical person, that doesn't make much sense to me for a logical from a logical point of view, because we'll go on about, okay, we need to put early supports in when it comes to learning to write or learning to read, um, you know, because a person might have additional barriers here. And then something as life-changing and critical as consent, we don't talk about that from the early years. And of course, there's an appropriacy what we introduce in our early years, but even things from the point of view of, you know, in a home where mum or dad gets out of the shower and they don't have their dressing gown on, and and thinking about that point of view from a child generalizing that, and obviously there's nothing wrong with that. What I'm getting at there is where, you know, there's a vulnerability piece there, where a child might think, well, you know, it's okay for an adult to be naked in front of me because that's something I see a lot. As the child is getting a little bit older as well. Perhaps if they have a cognitive difference where you're providing a lot of care, you wouldn't perhaps be in the mindset of knocking on the room, or maybe your your teenager isn't shouting, Mom, stop, don't come in. But actually, really important for the young person to learn that if I'm in a space by myself, an adult should be should not just be walking in, they should be knocking and they should be asking, can they come in? And again, thinking from that generalization piece as well. I would also, oh sorry, Cat, this is a passion topic soon. I I hope I I hope I don't talk too much on it. Um, but thankfully you have the power of editing to edit the edge of I am. Um, but I think the correct understanding of body parts, and this is all of what I'm saying here comes from genuine practice working with families, you know, particularly in Ireland where we're, you know, ever so prudish about certain things, you know, and we we teach different words for body parts, you know, we won't use a word, for example, like penis or vulva. Um, and again, I know I'm coming at this from quite a serious perspective, and I would have seen this play out. If a child is going to come to us and and tell us about something that has happened, it's it's really important that a child knows the names of those body parts. And perhaps if they're a child that's not speaking, that they've they've heard those names or they've seen visuals of those names. Because I've been in scenarios where a child would be letting me know about abuse, and it is so important that we have armed a child with that language, whether that be you know, spoken language, visual language, etc., to describe what is happening in their day-to-day. Another area I would say is, um, and I I I learned this from um a nurse that I did a training with years ago, and it always made me think was she talked about bikini areas. So we tend to teach, you know, you you don't touch where, you know, of other people the bikini areas. So you don't touch someone's breast, for example. And she put it in really common sense language that, you know, and you're like, oh God, how did I never think of that? Actually, if you were sitting here beside me now, Kat, and I reached out and rubbed your thigh or patted you on the thigh, it would be not appropriate. Um, if I even if I kind of rubbed your arm here, you know, you've only met me so many times, you'd probably be quite surprised. If I wanted to get your attention and you couldn't hear me, I would probably pat your shoulder. But we need to teach that. That isn't something that implicitly is learned. So where we're teaching, you know, we don't touch, you know, these areas on somebody else, or critically somebody else shouldn't touch those areas of your own. We need to actually think beyond that. Um, and I think the, if I can remember correctly, the approach we would have used in the school was from that elbows down, so that, you know, it was we if we wanted to get someone's attention or a child's attention, we would go from elbows down, constantly modelling that. Your child as well might be a child who receives speech and language therapy or occupational therapy, and a lot of our therapy exercises um revolve around the mouth, um, particularly perhaps if the child is having speech and language therapy. And again, we we don't typically think of the area of the mouth as a potential area, you know, for abuse. And again, a really important learning for me over my career has been around that. So perhaps I would have been helping a child to learn to blow bubbles, let's say, and very naturally with with no poor intention, you know, I might have touched on the child's cheeks to help them, or you know, for speech and language therapist, and I'm not one, so I don't want to describe uh a speech approach correctly, but perhaps with articulation or so on, you might be, you know, touching the lips, etc. But actually, are we asking? Are we saying, can I touch your mouth, yes or no? Because actually, in in a scenario, we want a child to know you need to ask me before you touch my mouth. It isn't a it isn't a regular thing. And again, we would have done this with our kids who are AAC users, etc. And all of this discussion in our setting led to us bringing in, you know, if educators are listening as well, a touch policy around that to really think about it across the school. Also, that concept, I suppose, of private and public as well. So we would often teach, you know, for example, um, if a child is masturbating or is naked, that that would be something that is okay maybe to do in the bathroom. So typically I would have seen this happen with a lot of parents where they might teach their child, you know, that's something you do in the bathroom, you know, that's not something you do down in the kitchen with your younger siblings, etc. And again, these things aren't obvious to everyone and need to be thought. But a really interesting one that came through a lot was actually of, you know, if you're in a public toilet, then that's a completely different kettle of fish. So more so really thinking about that concept of private versus public and what we can do in private versus what we can do um uh privately. And I suppose, you know, it it's never missed on me. I remember parents saying to me years ago um her child didn't have a communication system in place, they had just joined the special school. Um, so at that moment in time, that child hadn't been given the means or the methods to communicate in a way that the adults around them were responding to that or respecting. The child was certainly communicating, but the adults around them hadn't learned yet how to respect that communication system. And she said, you know, I I help my child onto the bus every morning, and then when my child comes home that evening, I don't know if something has gone wrong that day. Um, and that could be something wrong as you feel that, you know, Mary kind of laughed at you when you walked by, or that could be something really big and really wrong. And, you know, I agreed with the mom at the time, but I never forgot the feeling of the level of trust that so many parents are placing in the professionals that work with their child, and the huge, I suppose, responsibility in that, in that I don't feel at the moment my child could let me know if something harmful happened. So I think where a parent might have been made to feel that they're being neurotic about this area or it's nonsense to be worrying about this now, he's only seven. No, like I I, you know, you should be empowered to feel this is critical. You know, my child's sexual sensory safety is critical, and I want to help him understand that from the get go. Um, and and to me, you know, you should feel empowered in that and and never feel that you're being neurotic or you're being too much or any of those other terms.
SPEAKER_00Yeah, that is incredibly, incredibly helpful. Thank you so much for. That's brilliant.
SPEAKER_01No, no problem. I I could chat about it all day. So thank you so much for giving me the opportunity. And I suppose I should say that the next stage now for As I Am and DRCC is putting together materials, you know, from what we've learned, whether that be around visual supports that are actually meaningful and informative and don't make you feel less included, to the point of actually meeting with parents, meeting with young people to speak about these areas in an honest way. And of course, continuing to advocate from a policy perspective, because for some reason it's it's under discussed, you know, despite the potential for great harm. So I think if we can all keep this on the agenda and amplify this, there is so much that can be done to advance this area.
SPEAKER_00That's it. I mean, it it's something that hasn't been talked about and people are slightly scared to talk about. But the fact that that conversation is happening means that so much change can happen too. So it's it's an exciting time, as much as I think.
SPEAKER_01Exactly. And that's there, there is so much there to be done. It's not one we can feel hopeless about. It's one where, you know, as as um my boss Adam always says, the the barriers aren't inevitable. You know, these are these are barriers we can actually remove. Um and there's hope and and community in that, I suppose.
SPEAKER_00Thanks so much for listening to the podcast. This is a conversation-based interview designed to stimulate thinking and hopefully support the development of practice. It's not intended to be medical or psychological advice.