1 00:00:06,360 --> 00:00:11,600 Speaker 1: Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide? 2 00:00:12,280 --> 00:00:19,800 Speaker 1: Hosted by Tony Mantor, broadcasting from the heart of Music City, USA, Nashville, Tennessee. 3 00:00:20,840 --> 00:00:24,960 Speaker 1: Join us as our guests share their raw, powerful stories. 4 00:00:25,480 --> 00:00:29,479 Speaker 1: Some will spark laughter, others will move you to tears. 5 00:00:30,480 --> 00:00:35,280 Speaker 1: These real life journeys inspire, connect and remind. 6 00:00:34,880 --> 00:00:37,640 Speaker 2: You that you're never alone. 7 00:00:38,120 --> 00:00:42,480 Speaker 1: We're igniting a global movement to empower everyone to make 8 00:00:42,520 --> 00:00:48,240 Speaker 1: a lasting difference by fostering deep awareness on wavering acceptance, 9 00:00:48,479 --> 00:00:53,840 Speaker 1: and profound understanding of autism and mental health. Tune in, 10 00:00:54,320 --> 00:00:58,360 Speaker 1: be inspired, and join us in transforming the world, one 11 00:00:58,480 --> 00:01:05,000 Speaker 1: story at a time. Hi, I'm Tony Mantour. Welcome to 12 00:01:05,040 --> 00:01:09,759 Speaker 1: Why Not Me? Embracing Autism and Mental Health Worldwide? Before 13 00:01:09,800 --> 00:01:13,720 Speaker 1: we jump in, if you haven't already tapped the follow button, 14 00:01:14,080 --> 00:01:17,039 Speaker 1: it only takes two seconds and it helps this show 15 00:01:17,160 --> 00:01:21,040 Speaker 1: reach more families that need to hear these conversations. Joining 16 00:01:21,160 --> 00:01:23,560 Speaker 1: us today is a person that is no stranger to 17 00:01:23,640 --> 00:01:26,200 Speaker 1: this show. She's joined us a couple of times to 18 00:01:26,280 --> 00:01:30,760 Speaker 1: talk about her research. That's doctor Rachel Moseley. Her research 19 00:01:30,760 --> 00:01:37,400 Speaker 1: has explored topics including autistic burnout, suicidality, camouflaging or masking menopause, 20 00:01:37,640 --> 00:01:40,560 Speaker 1: and of course the impact that misunderstanding and the lack 21 00:01:40,640 --> 00:01:45,560 Speaker 1: of support can have on autistic adults. She has tremendous information. 22 00:01:45,880 --> 00:01:48,640 Speaker 1: So before we dive into our episode, we'll be back 23 00:01:48,680 --> 00:01:52,400 Speaker 1: with an uninterrupted show right after a word from US sponsors. 24 00:01:52,840 --> 00:01:54,720 Speaker 2: Thanks for joining us today. 25 00:01:55,680 --> 00:01:56,760 Speaker 3: My absolute treasure. 26 00:01:57,040 --> 00:01:59,440 Speaker 2: So tell us since we last spoke, what have you 27 00:01:59,520 --> 00:01:59,920 Speaker 2: been up to? 28 00:02:00,440 --> 00:02:03,160 Speaker 3: Oh, I've been working on a few different things. So 29 00:02:04,280 --> 00:02:07,400 Speaker 3: I have a couple of different projects I'm working on. 30 00:02:07,680 --> 00:02:10,680 Speaker 3: I do a lot of work around suicide and self injury, 31 00:02:10,919 --> 00:02:14,280 Speaker 3: and so we've done some quite big work here in 32 00:02:14,320 --> 00:02:17,480 Speaker 3: the UK trying to identify what autistic people think we 33 00:02:17,520 --> 00:02:20,440 Speaker 3: should focus on in order to prevent suicide. But then 34 00:02:20,440 --> 00:02:22,679 Speaker 3: I've also been doing a few different things in the 35 00:02:22,760 --> 00:02:26,400 Speaker 3: kind of menopause space, and so we've recently published a 36 00:02:26,440 --> 00:02:29,680 Speaker 3: book which we hope will help people. So that that's 37 00:02:30,080 --> 00:02:31,560 Speaker 3: been really positive as well. 38 00:02:31,760 --> 00:02:33,520 Speaker 1: Yes, and it was great to have you on to 39 00:02:33,600 --> 00:02:35,280 Speaker 1: talk about both those subjects. 40 00:02:35,520 --> 00:02:38,200 Speaker 3: Yes, exactly, so they are my two subjects. 41 00:02:38,320 --> 00:02:41,720 Speaker 1: Yes, when we talk about suicide, it's still one of 42 00:02:41,760 --> 00:02:44,880 Speaker 1: those subjects that people are uncomfortable bringing up. But the 43 00:02:44,960 --> 00:02:48,640 Speaker 1: reality is is something we have to talk about openly 44 00:02:48,880 --> 00:02:51,079 Speaker 1: if we want to prevent it. I think it's been 45 00:02:51,120 --> 00:02:52,840 Speaker 1: about a year and a half since you were on 46 00:02:52,919 --> 00:02:56,080 Speaker 1: to talk about this. Have you seen any meaningful changes. 47 00:02:56,400 --> 00:02:59,440 Speaker 1: Are the numbers improving it all or are they staying 48 00:02:59,480 --> 00:03:01,359 Speaker 1: pretty assistant as they have been. 49 00:03:01,520 --> 00:03:05,040 Speaker 3: It's really hard to tell if rates of suicide changing 50 00:03:05,040 --> 00:03:09,359 Speaker 3: in autistic people. It's hard to tell for multiple reasons 51 00:03:09,400 --> 00:03:12,919 Speaker 3: because often, certainly in the UK, it takes us a 52 00:03:12,960 --> 00:03:15,560 Speaker 3: long time to find out if the death was suicide. 53 00:03:16,400 --> 00:03:18,560 Speaker 3: It has to go through that coroner's office, and a 54 00:03:18,560 --> 00:03:22,640 Speaker 3: lot of suicides are not actually recognized as suicides and 55 00:03:22,680 --> 00:03:26,080 Speaker 3: hence we never get to hear about them. So typically 56 00:03:26,120 --> 00:03:29,040 Speaker 3: the reporting on suicide is always a few years later, 57 00:03:29,280 --> 00:03:33,079 Speaker 3: and as such we're not aware of any chain in 58 00:03:33,120 --> 00:03:36,360 Speaker 3: the rates of autistic people who die by suicide, and 59 00:03:36,400 --> 00:03:40,120 Speaker 3: of course many more consider suicide and attempt suicide but 60 00:03:40,200 --> 00:03:45,880 Speaker 3: don't die quite awfully. In terms of UK statistics, we 61 00:03:46,040 --> 00:03:52,400 Speaker 3: have a statutory process called National Child Mortality Database where 62 00:03:52,560 --> 00:03:55,040 Speaker 3: for every child that dies there has to be a 63 00:03:55,120 --> 00:03:58,280 Speaker 3: sort of statutory investigation of that of the death, and 64 00:03:58,360 --> 00:04:02,120 Speaker 3: so that was really against a little bit behind, but 65 00:04:02,400 --> 00:04:06,240 Speaker 3: we recently had a version released which focused on autistic 66 00:04:06,320 --> 00:04:10,440 Speaker 3: people autistic children, and suicide was the leading cause of 67 00:04:10,600 --> 00:04:14,720 Speaker 3: death in an autistic children. So importantly, to mention again, 68 00:04:15,160 --> 00:04:18,280 Speaker 3: you're going to have a case where many deaths are 69 00:04:18,320 --> 00:04:21,760 Speaker 3: not registered as suicide, and we will also have the 70 00:04:21,800 --> 00:04:26,960 Speaker 3: case when not all autistic children are actually diagnosed as autistic. 71 00:04:27,040 --> 00:04:28,839 Speaker 3: So the rates are probably a lot higher. 72 00:04:29,440 --> 00:04:32,159 Speaker 1: So what do you think families need to know, and 73 00:04:32,279 --> 00:04:35,560 Speaker 1: not just families but communities. What do they need to 74 00:04:35,640 --> 00:04:39,160 Speaker 1: know and how can they help so to prevent this 75 00:04:39,200 --> 00:04:40,680 Speaker 1: from continuing to happen. 76 00:04:41,080 --> 00:04:44,159 Speaker 3: Well, in our most recent research, we really wanted to 77 00:04:44,200 --> 00:04:48,720 Speaker 3: ask autistic people themselves what are the factors driving these 78 00:04:48,760 --> 00:04:52,640 Speaker 3: high suicide rates and also what needs to change in 79 00:04:52,720 --> 00:04:57,560 Speaker 3: order to prevent suicides. So our participants told us that 80 00:04:57,920 --> 00:05:03,279 Speaker 3: to a large extent, sides in autistic people are a 81 00:05:03,279 --> 00:05:09,840 Speaker 3: societal problem. They are related to stigma, inequality, discrimination, bullying, 82 00:05:10,320 --> 00:05:15,480 Speaker 3: and in response, autistic people typically said, we want systemic 83 00:05:15,720 --> 00:05:21,040 Speaker 3: societal changes throughout rather than just giving us an app, 84 00:05:21,080 --> 00:05:24,159 Speaker 3: you know, a crisis at We want changes in the 85 00:05:24,279 --> 00:05:29,200 Speaker 3: education system so they're successible. We want help with employment, 86 00:05:29,560 --> 00:05:33,320 Speaker 3: we want greater financial security, we want access to healthcare 87 00:05:33,360 --> 00:05:35,880 Speaker 3: and so forth. So they're telling us that really we 88 00:05:35,920 --> 00:05:40,680 Speaker 3: need a whole society approach to tackling suicide and autistic people. 89 00:05:41,520 --> 00:05:44,600 Speaker 1: One of the issues that I continue to hear is 90 00:05:44,680 --> 00:05:49,920 Speaker 1: when someone that does not understand artism, they hear someone 91 00:05:50,120 --> 00:05:53,440 Speaker 1: is artistic, and all of a sudden, they think that 92 00:05:53,440 --> 00:05:56,080 Speaker 1: that person needs to be fixed, and there is no 93 00:05:56,240 --> 00:05:59,160 Speaker 1: fix for this. How do we get this across to 94 00:05:59,279 --> 00:06:02,440 Speaker 1: people that this is not a person that needs to 95 00:06:02,440 --> 00:06:06,520 Speaker 1: be fixed, this is a system that needs to be fixed. 96 00:06:06,720 --> 00:06:10,560 Speaker 3: It's really difficult because I think we're beginning to see 97 00:06:10,640 --> 00:06:14,480 Speaker 3: changes in the way the way children are taught about autism. 98 00:06:14,839 --> 00:06:18,400 Speaker 3: So we are beginning to see, you know, generational changes 99 00:06:18,440 --> 00:06:22,320 Speaker 3: in the way people think about autism. Both hard to 100 00:06:22,320 --> 00:06:26,479 Speaker 3: get those messages through to the older generations because you know, 101 00:06:26,520 --> 00:06:30,560 Speaker 3: when they grew up, autism was handicapped, it was you know, 102 00:06:30,640 --> 00:06:33,880 Speaker 3: the way we talked about autism was very different. It's 103 00:06:34,080 --> 00:06:37,599 Speaker 3: really hard to challenge that. But I think it's really 104 00:06:37,640 --> 00:06:42,279 Speaker 3: important that in public discourse about autism, the figures who 105 00:06:42,440 --> 00:06:48,480 Speaker 3: you know, are authorities whoever responsibility for responsible reporting, they 106 00:06:48,560 --> 00:06:52,160 Speaker 3: need to talk about autism very differently, in a humane, 107 00:06:53,080 --> 00:06:54,480 Speaker 3: non stigmatizing way. 108 00:06:55,400 --> 00:06:59,159 Speaker 1: In your research. Have you seen that people tend to 109 00:06:59,200 --> 00:07:03,920 Speaker 1: get missed down diagnosed. Sometimes they'll say they're bipolar, they'll 110 00:07:03,960 --> 00:07:10,520 Speaker 1: say they're ADHD anxiety. Really, what it is is there artistic? 111 00:07:11,200 --> 00:07:13,200 Speaker 1: Have you seen this happen consistently? 112 00:07:14,200 --> 00:07:18,480 Speaker 3: Yes. Indeed, actually the most the most common misdiagnosis we 113 00:07:18,560 --> 00:07:24,720 Speaker 3: hear about is personality disorder, especially what's called borderline personality disorder. 114 00:07:24,760 --> 00:07:30,200 Speaker 3: We're emotionally unstated personality disorder, and essentially that is often 115 00:07:30,840 --> 00:07:35,240 Speaker 3: a diagnosis given to adhd as and autistic people who 116 00:07:35,320 --> 00:07:39,240 Speaker 3: show suicidal behaviors or self harm. So basically, if you're 117 00:07:39,320 --> 00:07:43,760 Speaker 3: very dysregulated, if you're having suicidal thoughts or self harming, 118 00:07:44,120 --> 00:07:47,600 Speaker 3: you're often given that label even if you're actually you're 119 00:07:47,600 --> 00:07:48,280 Speaker 3: a divergent. 120 00:07:49,760 --> 00:07:52,600 Speaker 1: How do we get around this so that we can 121 00:07:52,640 --> 00:07:57,960 Speaker 1: get people to understand that artism is not a disease. 122 00:07:59,320 --> 00:08:01,880 Speaker 1: All it is is someone that has a brain that 123 00:08:02,000 --> 00:08:05,480 Speaker 1: sees things and perceives things in a different way than 124 00:08:05,560 --> 00:08:09,240 Speaker 1: others do. How do we get this across to them 125 00:08:09,640 --> 00:08:11,640 Speaker 1: that this is not a problem. 126 00:08:12,240 --> 00:08:16,760 Speaker 3: Oh if we had the answer, oh, everything would be changed. 127 00:08:16,880 --> 00:08:20,800 Speaker 3: It's super difficult. I think things are improving. We are 128 00:08:20,840 --> 00:08:25,480 Speaker 3: seeing new generations of clinicians, mental health professionals who have 129 00:08:25,560 --> 00:08:29,800 Speaker 3: a better understanding, and it's really important, as I say, 130 00:08:29,840 --> 00:08:34,040 Speaker 3: authority people in places of responsibility and authority. There's a 131 00:08:34,160 --> 00:08:39,520 Speaker 3: really terribly, dreadfully harmful rhetoric and it's just so harmful 132 00:08:39,720 --> 00:08:42,120 Speaker 3: and it's very, very hard for us to move forward 133 00:08:42,200 --> 00:08:46,880 Speaker 3: and progress towards this neuro affirmative perspective when we have 134 00:08:47,480 --> 00:08:51,800 Speaker 3: the kind of trumpeting of this kind of cure narrative. 135 00:08:52,480 --> 00:08:55,280 Speaker 1: Okay, I think this is interesting. You just brought up 136 00:08:55,320 --> 00:09:00,120 Speaker 1: the mental health issue. Then there's an overlap between autism 137 00:08:59,920 --> 00:09:01,040 Speaker 1: and mental health. 138 00:09:02,480 --> 00:09:03,439 Speaker 2: Some people think of. 139 00:09:03,480 --> 00:09:09,239 Speaker 1: ADHD, anxiety or whatever the case may be, yet autism 140 00:09:09,520 --> 00:09:14,520 Speaker 1: and those things can overlap several times. What do clinicians 141 00:09:14,559 --> 00:09:18,200 Speaker 1: still misunderstand about autism and mental health? 142 00:09:18,840 --> 00:09:23,280 Speaker 3: So there's a lot of misunderstandings out there, but I 143 00:09:23,320 --> 00:09:27,480 Speaker 3: think a really problematic one is that quite often we 144 00:09:27,559 --> 00:09:32,880 Speaker 3: hear clinicians kind of confuse autism mental illness, so they 145 00:09:32,960 --> 00:09:37,000 Speaker 3: will think that being anxious or having anxiety or depression 146 00:09:37,080 --> 00:09:39,560 Speaker 3: is just a natural part of being autistic, and hence 147 00:09:39,559 --> 00:09:42,320 Speaker 3: you don't need to treat it, and that is terribly 148 00:09:42,480 --> 00:09:46,200 Speaker 3: terribly What we know from research is that mental illness 149 00:09:46,200 --> 00:09:49,960 Speaker 3: and autistic people is complex. There's genetic stuff going on, 150 00:09:50,040 --> 00:09:52,440 Speaker 3: but a lot of it is about trauma. And that 151 00:09:52,679 --> 00:09:57,559 Speaker 3: tells us that autistic people don't need to have mental illnesses. 152 00:09:57,720 --> 00:10:01,360 Speaker 3: We can be mentally healthy autism stick people, and that's 153 00:10:01,679 --> 00:10:06,559 Speaker 3: a really hopeful message. But it means that when clinicians 154 00:10:06,760 --> 00:10:10,120 Speaker 3: see an autistic person with depression or with anxiety, they 155 00:10:10,160 --> 00:10:12,640 Speaker 3: need to treat that. They need to make you know, 156 00:10:12,720 --> 00:10:15,840 Speaker 3: autistic people can be free of mental illnesses and we 157 00:10:15,880 --> 00:10:16,840 Speaker 3: should be eating for that. 158 00:10:17,240 --> 00:10:21,120 Speaker 1: Another thing I think is often misunderstood is autism and 159 00:10:21,200 --> 00:10:27,760 Speaker 1: mental health, especially the idea of masking. When autistic people 160 00:10:28,160 --> 00:10:31,439 Speaker 1: feel like they have to mask to fit in, sometimes 161 00:10:31,480 --> 00:10:34,520 Speaker 1: they can reach that burnout stage. They're trying to mask, 162 00:10:34,640 --> 00:10:38,280 Speaker 1: They're doing their best, they're trying so hard, but eventually 163 00:10:38,400 --> 00:10:41,319 Speaker 1: it just starts to break down and that can turn 164 00:10:41,480 --> 00:10:45,280 Speaker 1: into a long time mental impact. How do we get 165 00:10:45,320 --> 00:10:50,240 Speaker 1: people to understand that this is a very important issue. 166 00:10:50,120 --> 00:10:51,920 Speaker 2: That we have to look at and we. 167 00:10:51,960 --> 00:10:54,840 Speaker 3: Have to keep talking about it, keep talking, keep talking. 168 00:10:55,520 --> 00:10:59,680 Speaker 3: And I think that with masking it's really important and 169 00:10:59,760 --> 00:11:04,160 Speaker 3: the size that it is a it's not such a 170 00:11:04,240 --> 00:11:09,800 Speaker 3: simple issue, as you know. We need to make autistic 171 00:11:09,840 --> 00:11:13,120 Speaker 3: people stop masking, or we need to encourage autistic people 172 00:11:13,120 --> 00:11:15,920 Speaker 3: to stop asking, because the reality is it's not a 173 00:11:15,960 --> 00:11:19,000 Speaker 3: safe world for autistic people to not mask. And so 174 00:11:19,400 --> 00:11:22,400 Speaker 3: I think society has to take responsibility for the fact 175 00:11:22,440 --> 00:11:25,760 Speaker 3: that autistic people asked because it's not safe in this 176 00:11:25,920 --> 00:11:29,560 Speaker 3: society to be openly autistic. So there needs to be 177 00:11:29,640 --> 00:11:33,120 Speaker 3: a kind of a realization that it's not The responsibility 178 00:11:33,160 --> 00:11:35,920 Speaker 3: isn't with the autistic person. If the world was safe 179 00:11:35,920 --> 00:11:38,600 Speaker 3: to be autistic in, then we wouldn't see the masking. 180 00:11:39,200 --> 00:11:42,640 Speaker 1: Yeah, that's a great point. Now, one of the more 181 00:11:42,880 --> 00:11:48,080 Speaker 1: under recognized people with autism is the females. Most people 182 00:11:48,120 --> 00:11:51,800 Speaker 1: when they think about artism, they think about the males. 183 00:11:52,280 --> 00:11:55,160 Speaker 1: Because of this, they can have the rougher road to travel. 184 00:11:55,880 --> 00:11:58,680 Speaker 1: Lots of times they'll do heavy masking because they're trying 185 00:11:58,720 --> 00:12:02,559 Speaker 1: to fit in with the other girls that are more popular. Eventually, 186 00:12:02,920 --> 00:12:06,120 Speaker 1: this can create a lot of trauma for them. How 187 00:12:06,120 --> 00:12:10,240 Speaker 1: do we get to get them to understand that by 188 00:12:10,280 --> 00:12:15,120 Speaker 1: doing all this it really is not healthy and unfortunately 189 00:12:15,200 --> 00:12:18,360 Speaker 1: it can lead to a lot of things, including depression, 190 00:12:18,679 --> 00:12:21,040 Speaker 1: because they're not fitting in the way they hope that 191 00:12:21,080 --> 00:12:21,959 Speaker 1: they would. 192 00:12:22,360 --> 00:12:23,360 Speaker 2: How do we help them. 193 00:12:24,120 --> 00:12:28,600 Speaker 3: I think a key part is diagnosing diagnosing autistic people 194 00:12:28,679 --> 00:12:33,760 Speaker 3: as soon as possible. Really importantly, when you're an autistic person, 195 00:12:33,920 --> 00:12:37,120 Speaker 3: whether you're a female or not, you often don't know 196 00:12:37,200 --> 00:12:40,920 Speaker 3: you're masking, Especially if you don't know your autistic. You 197 00:12:41,240 --> 00:12:44,719 Speaker 3: just know that I can really resonate with this. You 198 00:12:45,280 --> 00:12:47,440 Speaker 3: just know that if you behave in a certain way, 199 00:12:47,480 --> 00:12:50,360 Speaker 3: you're less likely to be bullied or you're less likely 200 00:12:50,440 --> 00:12:55,880 Speaker 3: to be rejected. And so it's really it's really impossible 201 00:12:55,920 --> 00:12:59,960 Speaker 3: to know as an adolescent that you know what you're doing. 202 00:13:00,000 --> 00:13:03,160 Speaker 3: It's called masking, and it has all these long term 203 00:13:03,200 --> 00:13:06,880 Speaker 3: outcomes because right there and then it keeps you safe. 204 00:13:07,040 --> 00:13:10,280 Speaker 3: So again it is something we have to challenge the 205 00:13:10,400 --> 00:13:15,640 Speaker 3: environment that drives masking behaviors. But if we diagnose autistic 206 00:13:15,720 --> 00:13:17,840 Speaker 3: people early on, and we can help them to be 207 00:13:18,000 --> 00:13:22,240 Speaker 3: self aware that they are masking, then we can also 208 00:13:22,440 --> 00:13:26,400 Speaker 3: start to put in place some kind of countermeasures. So 209 00:13:26,880 --> 00:13:29,320 Speaker 3: even if, as I mentioned, you know, we live in 210 00:13:29,320 --> 00:13:35,240 Speaker 3: a world where sadly, masking is sometimes necessary for self protection, 211 00:13:35,679 --> 00:13:38,480 Speaker 3: but if we know we're autistic and we know we're masking, 212 00:13:38,960 --> 00:13:42,680 Speaker 3: we can plan in things like extra self care. We 213 00:13:42,720 --> 00:13:46,280 Speaker 3: can learn how to unmask and we can just be 214 00:13:46,400 --> 00:13:48,440 Speaker 3: more aware of the cost of it. 215 00:13:48,720 --> 00:13:51,440 Speaker 1: I have a gentleman I was talking with he was 216 00:13:51,520 --> 00:13:54,839 Speaker 1: diagnosed artistic later in life, and that's another subject I 217 00:13:54,960 --> 00:13:57,839 Speaker 1: want to get into. Right after this, he had been 218 00:13:57,920 --> 00:14:01,760 Speaker 1: masking pretty much his whole life. Then he was around 219 00:14:01,800 --> 00:14:05,400 Speaker 1: this person he felt really comfortable with and he didn't mask. 220 00:14:05,760 --> 00:14:09,200 Speaker 1: He just let himself be himself. The person he was 221 00:14:09,280 --> 00:14:12,480 Speaker 1: with said, what's wrong with you? You're doing this, you're 222 00:14:12,480 --> 00:14:15,840 Speaker 1: doing that. It was at that point he realized that 223 00:14:15,920 --> 00:14:18,720 Speaker 1: he had to go back to masking again. He did, 224 00:14:18,920 --> 00:14:21,440 Speaker 1: and he turned the whole situation around in a heartbeat. 225 00:14:22,000 --> 00:14:26,440 Speaker 1: Everything turned out okay. But that's a tough situation. 226 00:14:30,680 --> 00:14:34,480 Speaker 3: I'm such a sad story. And again it's difficult because 227 00:14:34,480 --> 00:14:38,920 Speaker 3: it shouldn't be the responsibility of the autistic person to 228 00:14:39,120 --> 00:14:40,320 Speaker 3: educate the other person. 229 00:14:40,960 --> 00:14:44,360 Speaker 1: Yeah, and if your friends, friends should accept friends for 230 00:14:44,440 --> 00:14:47,840 Speaker 1: what they are, not what they think they are. 231 00:14:47,960 --> 00:14:50,800 Speaker 3: That's devastating, that's really devastating. 232 00:14:51,200 --> 00:14:55,120 Speaker 1: No, like I was talking earlier, he was diagnosed later 233 00:14:55,160 --> 00:14:58,320 Speaker 1: in life. Have you done or been around anyone that's 234 00:14:58,360 --> 00:15:03,640 Speaker 1: done research on this, How being late diagnosed, how they 235 00:15:03,720 --> 00:15:07,120 Speaker 1: accept it, and then of course how it changed their 236 00:15:07,160 --> 00:15:08,360 Speaker 1: life from that point on. 237 00:15:10,440 --> 00:15:15,560 Speaker 3: So we know that I have done some related research, 238 00:15:15,800 --> 00:15:18,240 Speaker 3: and I know of a lot of research in this area. 239 00:15:18,320 --> 00:15:22,520 Speaker 3: So we know that autistic people who grow undiagnosed, and 240 00:15:22,520 --> 00:15:25,960 Speaker 3: hence who are late diagnosed, they tend to experience a 241 00:15:25,960 --> 00:15:30,440 Speaker 3: sort of complex chronic trauma and mental health difficulties, physical 242 00:15:30,440 --> 00:15:35,280 Speaker 3: health difficulties, in employment problems, relationship difficulties, and so forth, 243 00:15:35,320 --> 00:15:39,560 Speaker 3: and so forth, education difficulties. They often blame themselves for 244 00:15:39,600 --> 00:15:43,080 Speaker 3: these things, or they're labeled by other people as weird 245 00:15:43,200 --> 00:15:46,880 Speaker 3: or broken or so forth. So what sometimes happens when 246 00:15:46,920 --> 00:15:52,000 Speaker 3: a person gets diagnosed is it's a huge torrent of emotions, 247 00:15:53,160 --> 00:15:56,520 Speaker 3: including some really complex ones. There might be grief and 248 00:15:56,640 --> 00:15:59,240 Speaker 3: resentment there because you know they've gone through all this 249 00:15:59,320 --> 00:16:03,800 Speaker 3: suffering was needless. Why weren't they picked up sooner? What 250 00:16:03,920 --> 00:16:06,120 Speaker 3: kind of life could they have? So there's a lot 251 00:16:06,120 --> 00:16:09,480 Speaker 3: of complex emotions, but there's also often a lot of relief, 252 00:16:10,240 --> 00:16:13,520 Speaker 3: and there's a sense of often a sense of validation 253 00:16:14,080 --> 00:16:17,840 Speaker 3: that actually, I'm not a bad person, I'm actually just autistic. 254 00:16:18,040 --> 00:16:20,800 Speaker 3: I can give the analogy of one of our menopause 255 00:16:20,840 --> 00:16:25,160 Speaker 3: research participants. She talked about how her whole life. She'd 256 00:16:25,160 --> 00:16:28,440 Speaker 3: felt like a broken horse, but then when she discovered 257 00:16:28,480 --> 00:16:32,320 Speaker 3: she was autistic, she realized she was a beautifully functioning zebra. 258 00:16:32,800 --> 00:16:34,000 Speaker 2: Yeah, that's a great story. 259 00:16:34,440 --> 00:16:36,760 Speaker 1: I was speaking with a person just the other day 260 00:16:37,040 --> 00:16:40,040 Speaker 1: and his dad was diagnosed to artistic at the age 261 00:16:40,040 --> 00:16:40,800 Speaker 1: of seventy. 262 00:16:41,680 --> 00:16:45,640 Speaker 2: Wow, that just changed his whole perception of life. 263 00:16:45,920 --> 00:16:49,040 Speaker 1: Yeah, they started looking back and then everything started to 264 00:16:49,160 --> 00:16:53,960 Speaker 1: make perfect sense. So the father and son late diagnosed 265 00:16:54,080 --> 00:16:57,800 Speaker 1: and it created a really good connection. That was just 266 00:16:57,840 --> 00:16:58,960 Speaker 1: a great positive. 267 00:17:00,600 --> 00:17:05,240 Speaker 3: What we hear from people is that realizing their autistic 268 00:17:05,320 --> 00:17:08,600 Speaker 3: allows them to be so much more self compassionate. They're 269 00:17:08,600 --> 00:17:12,720 Speaker 3: often such fierce critics of themselves, and then understanding that 270 00:17:12,760 --> 00:17:17,520 Speaker 3: they're autistic really validates their difficulties and just allows them 271 00:17:17,600 --> 00:17:19,679 Speaker 3: to be much more self compassionate. 272 00:17:19,960 --> 00:17:25,160 Speaker 1: There's a difference between clinical research and lived experience. As 273 00:17:25,200 --> 00:17:29,920 Speaker 1: a researcher, have you seen where research would say one 274 00:17:29,920 --> 00:17:34,119 Speaker 1: thing and then lived experience would say the complete opposite. 275 00:17:34,440 --> 00:17:36,640 Speaker 1: Have you seen this kind of scenario at all? 276 00:17:37,240 --> 00:17:40,399 Speaker 3: This is an interesting question. So the thing that I 277 00:17:40,440 --> 00:17:44,160 Speaker 3: think comes to my mind in terms of how, as 278 00:17:44,200 --> 00:17:47,040 Speaker 3: you say, research can kind of be telling one's story 279 00:17:47,080 --> 00:17:51,000 Speaker 3: and autistic people can be telling another. So historically there's 280 00:17:51,040 --> 00:17:54,960 Speaker 3: this idea that autistic people lack empathy marks and lots 281 00:17:55,000 --> 00:18:01,800 Speaker 3: of research showing that if you do any a kind 282 00:18:01,840 --> 00:18:08,720 Speaker 3: of artificial experimental task or a questionnaire measuring empathy, autistic 283 00:18:08,760 --> 00:18:14,399 Speaker 3: people black empathy. But this very much doesn't relate. It 284 00:18:14,400 --> 00:18:18,120 Speaker 3: doesn't correlate with autistic people tell us. What they tell 285 00:18:18,200 --> 00:18:21,480 Speaker 3: us is that actually, I feel all the emotions in 286 00:18:21,480 --> 00:18:25,160 Speaker 3: the room around me. I'm so affected by other people's emotions. 287 00:18:25,520 --> 00:18:27,959 Speaker 3: So we actually explored this a little bit in our 288 00:18:28,040 --> 00:18:33,000 Speaker 3: own research, and we've found likewise that essentially when people 289 00:18:33,240 --> 00:18:37,679 Speaker 3: have stronger and stronger emotional empathy, which means that they 290 00:18:38,520 --> 00:18:42,040 Speaker 3: feel the emotions of other people very intensely, whereas their 291 00:18:42,080 --> 00:18:45,720 Speaker 3: cognitive empathy, which is like their understanding of other people's 292 00:18:45,720 --> 00:18:48,280 Speaker 3: emotional states, might be a bit lower. So we've found 293 00:18:48,280 --> 00:18:51,959 Speaker 3: that autistic people, because they have this really strong emotional 294 00:18:52,080 --> 00:18:56,640 Speaker 3: response to other people's emotions, it's actually overwhelming for them. 295 00:18:57,000 --> 00:19:02,000 Speaker 3: So they have emotional empathy in abundance. They feel everything, 296 00:19:02,240 --> 00:19:05,600 Speaker 3: all the emotions of other people, and it really affects 297 00:19:05,640 --> 00:19:08,719 Speaker 3: them actually in a harmful way because it's so overwhelming. 298 00:19:08,920 --> 00:19:12,680 Speaker 3: So it's a case where Historically, researchers said one thing, 299 00:19:13,119 --> 00:19:16,520 Speaker 3: autistic people have said, that's not true, and that's harming us. 300 00:19:16,640 --> 00:19:19,880 Speaker 3: And now we are beginning to the research is beginning 301 00:19:19,880 --> 00:19:23,119 Speaker 3: to catch up and align with what autistic people are saying. 302 00:19:23,640 --> 00:19:26,680 Speaker 1: Well, I think it has something to do with understanding. 303 00:19:27,359 --> 00:19:30,879 Speaker 1: Many times, when a researcher is looking at something, it 304 00:19:30,880 --> 00:19:33,520 Speaker 1: can be black and white. You see a picture of something, 305 00:19:33,640 --> 00:19:37,399 Speaker 1: you see words on a paper, and that's it. There's 306 00:19:37,440 --> 00:19:40,959 Speaker 1: just two different perspectives on it. I think that's very interesting. 307 00:19:41,359 --> 00:19:44,879 Speaker 1: Another thing you brought up, and that's joy. We often 308 00:19:44,960 --> 00:19:50,159 Speaker 1: focus on artistic challenges. What does artistic joy look like? 309 00:19:50,560 --> 00:19:54,760 Speaker 1: What strength does that give them that society might just overlook. 310 00:19:54,400 --> 00:20:00,000 Speaker 3: Well, my autistic joy is a really neglected research have you. 311 00:20:00,080 --> 00:20:03,040 Speaker 3: So we're beginning to have more studies or what's often 312 00:20:03,080 --> 00:20:06,879 Speaker 3: known as autistic flourishing and as you say, joy and 313 00:20:06,960 --> 00:20:10,000 Speaker 3: the kinds of things that autistic people talk about is 314 00:20:10,000 --> 00:20:14,359 Speaker 3: bringing them joy, are engaging in their passions. So what 315 00:20:14,520 --> 00:20:17,520 Speaker 3: some people call special interests, I prefer to call passions. 316 00:20:17,560 --> 00:20:21,000 Speaker 3: So autistic people describe that as being something that's joyous. 317 00:20:21,119 --> 00:20:24,679 Speaker 3: They also describe sensory joy. As you say, we often 318 00:20:24,880 --> 00:20:28,840 Speaker 3: talk a lot about sensory distress, but autistic people talk 319 00:20:28,880 --> 00:20:32,879 Speaker 3: a lot about joy and sensory experiences as well, and 320 00:20:33,119 --> 00:20:37,679 Speaker 3: joy in stemming in competitive movements. So sometimes you hear 321 00:20:37,720 --> 00:20:40,960 Speaker 3: these called autistic glimmers, and they're really really important for 322 00:20:41,080 --> 00:20:41,480 Speaker 3: well being. 323 00:20:42,080 --> 00:20:44,960 Speaker 1: In case we have new listeners, and I hope we do, 324 00:20:45,359 --> 00:20:49,040 Speaker 1: the audience might not realize that you are artistic as well. 325 00:20:49,080 --> 00:20:49,480 Speaker 2: Correct. 326 00:20:49,920 --> 00:20:53,959 Speaker 1: Yes, So when you're doing clinical research, how does this 327 00:20:54,040 --> 00:20:54,640 Speaker 1: affect you? 328 00:20:54,920 --> 00:20:56,480 Speaker 2: Because you're autistic as well. 329 00:20:56,880 --> 00:21:00,359 Speaker 1: You see all the research, the calculations, the numbers that 330 00:21:00,520 --> 00:21:03,359 Speaker 1: might just very well say something different like we was 331 00:21:03,400 --> 00:21:06,840 Speaker 1: just speaking about, So how does this affect you? 332 00:21:08,720 --> 00:21:13,600 Speaker 3: To be honest, I feel very privileged to be in 333 00:21:13,600 --> 00:21:17,320 Speaker 3: a position I'm in being able to do research with 334 00:21:17,560 --> 00:21:22,200 Speaker 3: the autistic community because the kind of research I'm doing 335 00:21:22,280 --> 00:21:27,800 Speaker 3: right now is more where I'm studying topics that historically 336 00:21:28,280 --> 00:21:32,080 Speaker 3: haven't really been talked about. People haven't really asked autistic 337 00:21:32,160 --> 00:21:35,040 Speaker 3: people now what's really going on with your menopause or 338 00:21:35,080 --> 00:21:39,600 Speaker 3: your suicidal experiences. So the research I'm trying to do 339 00:21:39,720 --> 00:21:44,440 Speaker 3: is more bringing to like what autistic people are experiencing. 340 00:21:44,600 --> 00:21:48,920 Speaker 3: I feel very, very very lucky to as an autistic 341 00:21:49,000 --> 00:21:51,040 Speaker 3: person be able to do that. 342 00:21:51,680 --> 00:21:53,359 Speaker 2: I know we've made great steps. 343 00:21:53,800 --> 00:21:56,640 Speaker 1: Unfortunately, there's a lot of people that still look at 344 00:21:56,680 --> 00:22:01,679 Speaker 1: autism as a deficit lens. The data is clear, the 345 00:22:01,760 --> 00:22:05,960 Speaker 1: lived experience is clear, The mental health and the understanding 346 00:22:06,040 --> 00:22:08,280 Speaker 1: that we're trying to get across is pretty clear. 347 00:22:08,440 --> 00:22:11,960 Speaker 2: We're finding that out. So how do we change the. 348 00:22:11,960 --> 00:22:16,560 Speaker 1: System Because a lot of people are missing the things 349 00:22:16,600 --> 00:22:20,080 Speaker 1: that you're finding out and other researchers are finding out, 350 00:22:20,720 --> 00:22:24,600 Speaker 1: and the system isn't changing, or if it is, it's 351 00:22:24,680 --> 00:22:29,040 Speaker 1: changing very very slowly. How do we get the system 352 00:22:29,160 --> 00:22:32,879 Speaker 1: boosted to catch up with everything that we're talking about. 353 00:22:33,240 --> 00:22:37,200 Speaker 3: It's really really difficult and it changes very slow to come. 354 00:22:38,400 --> 00:22:42,320 Speaker 3: In the UK, we're doing a lot and everything we 355 00:22:42,440 --> 00:22:47,320 Speaker 3: can to engage with policy makers because of course your 356 00:22:47,359 --> 00:22:51,679 Speaker 3: everyday personal street. We can all do small things and 357 00:22:51,720 --> 00:22:55,080 Speaker 3: we can all behave differently towards autistic people in our 358 00:22:55,119 --> 00:22:57,639 Speaker 3: lives and people you know who might be autistic. We 359 00:22:57,680 --> 00:23:02,679 Speaker 3: can all be kinder. But to achieve systemic change, we 360 00:23:02,880 --> 00:23:07,120 Speaker 3: absolutely need to go after the policy makers so to speak. 361 00:23:08,440 --> 00:23:13,119 Speaker 3: We need to demand better for our autistic loved ones. 362 00:23:13,880 --> 00:23:17,520 Speaker 1: Yeah, I think that's a very key thing because the 363 00:23:17,640 --> 00:23:22,119 Speaker 1: legislators have to know I'm doing a special with a 364 00:23:22,119 --> 00:23:26,240 Speaker 1: lot of legislators, and even when they know, it's getting 365 00:23:26,280 --> 00:23:29,560 Speaker 1: the other people and the other legislators to know and 366 00:23:29,640 --> 00:23:32,440 Speaker 1: vote on it as well to help make that change 367 00:23:32,640 --> 00:23:34,359 Speaker 1: and getting everyone on board. 368 00:23:34,720 --> 00:23:36,320 Speaker 2: It is really difficult. 369 00:23:36,560 --> 00:23:41,400 Speaker 3: It is there's no simple answer, unfortunately, but you're right. 370 00:23:42,000 --> 00:23:45,119 Speaker 1: Now we've covered a lot of things. What do you 371 00:23:45,240 --> 00:23:48,400 Speaker 1: think that people still need to hear that is very 372 00:23:48,440 --> 00:23:52,760 Speaker 1: important about the research you're doing and what you're going 373 00:23:52,800 --> 00:23:54,600 Speaker 1: to be doing moving forward. 374 00:23:56,480 --> 00:23:59,280 Speaker 3: Very difficult, great question. I just try to think the 375 00:23:59,320 --> 00:24:03,880 Speaker 3: blind mote cop pants. I'd say, we know seeing more 376 00:24:03,920 --> 00:24:08,240 Speaker 3: and more the inequalities that autistic people face, and they've 377 00:24:08,240 --> 00:24:12,119 Speaker 3: always faced. So whereas in the past there's been this 378 00:24:12,280 --> 00:24:16,960 Speaker 3: idea that autistic people just naturally have mental illnesses and 379 00:24:17,000 --> 00:24:20,840 Speaker 3: we you know, we naturally lead shorter lives and so forth, 380 00:24:21,080 --> 00:24:24,800 Speaker 3: we're now really bringing to the fore that it doesn't 381 00:24:24,840 --> 00:24:27,760 Speaker 3: have to be this way that we have shorter lives 382 00:24:27,960 --> 00:24:31,919 Speaker 3: and have poorer health because of inequalities, and that really 383 00:24:32,160 --> 00:24:36,320 Speaker 3: shifts the narrative. It makes it not about you know, 384 00:24:36,720 --> 00:24:41,360 Speaker 3: treating the individual or treating autism in the individual. It's 385 00:24:41,400 --> 00:24:46,360 Speaker 3: about demanding better lives for autistic people not equal lives. 386 00:24:46,720 --> 00:24:50,879 Speaker 3: So that narrative is really changing, and hence it's shifting 387 00:24:50,960 --> 00:24:55,440 Speaker 3: the idea that autism and being autistic is pathological. It's 388 00:24:55,560 --> 00:24:59,479 Speaker 3: rather saying that the world does not treat autistic people fairly. 389 00:25:00,080 --> 00:25:03,760 Speaker 3: So that I think is a positive direction because in 390 00:25:03,760 --> 00:25:06,639 Speaker 3: the past, the way people wrote about autism and the 391 00:25:06,680 --> 00:25:10,520 Speaker 3: assumptions they made were really really awful. 392 00:25:11,040 --> 00:25:13,760 Speaker 1: Yeah, that's a big thing. People tend to make their 393 00:25:13,800 --> 00:25:17,400 Speaker 1: assumptions and they know nothing about it sometimes and they 394 00:25:17,440 --> 00:25:20,600 Speaker 1: have nothing to back up what they're telling other people. 395 00:25:22,160 --> 00:25:27,199 Speaker 1: It's hurtful, I mean very My hope is that with 396 00:25:27,400 --> 00:25:30,639 Speaker 1: everything that you're doing, the information you're putting out there, 397 00:25:31,080 --> 00:25:34,760 Speaker 1: that people will grab a hole of bit start to understand, 398 00:25:35,240 --> 00:25:37,240 Speaker 1: and then truth change can happen. 399 00:25:37,680 --> 00:25:39,480 Speaker 2: We have to hope for the future. 400 00:25:40,040 --> 00:25:43,000 Speaker 3: I hope so too. I think a part of that, 401 00:25:43,400 --> 00:25:47,440 Speaker 3: a really helpful part is hearing from autistic people themselves. 402 00:25:47,840 --> 00:25:51,360 Speaker 3: Autistic people are very often othered in society. They are 403 00:25:51,480 --> 00:25:55,719 Speaker 3: treated and perceived as other. Whereas if we can listen 404 00:25:55,880 --> 00:25:59,960 Speaker 3: to autistic voices because they're there waiting to be high, 405 00:26:00,560 --> 00:26:04,560 Speaker 3: we can sort of challenge that idea that autistic people 406 00:26:04,640 --> 00:26:07,680 Speaker 3: are other than you. We all share much much more 407 00:26:07,720 --> 00:26:08,359 Speaker 3: than we differ. 408 00:26:08,680 --> 00:26:11,639 Speaker 1: You mentioned that you have written a book. Tell us 409 00:26:11,680 --> 00:26:12,680 Speaker 1: a little about it. 410 00:26:13,160 --> 00:26:17,040 Speaker 3: Yes, So I wrote a book with my colleague, professor 411 00:26:17,160 --> 00:26:20,879 Speaker 3: Julie Gambeltner, and we wrote a book about autistic menopause. 412 00:26:21,160 --> 00:26:25,359 Speaker 3: So it's published by Jessica Kingsley publisher. It's called Autistic Menopause, 413 00:26:25,400 --> 00:26:29,399 Speaker 3: A Guide to the Menopause Transition for Autistic People and 414 00:26:29,440 --> 00:26:33,280 Speaker 3: those who support them. So it is aimed at autistic 415 00:26:33,359 --> 00:26:38,000 Speaker 3: people as well as healthcare professionals or other professionals and 416 00:26:38,040 --> 00:26:41,280 Speaker 3: their loved ones. And what we really wanted to do 417 00:26:41,400 --> 00:26:46,280 Speaker 3: with this book was we really wanted to demystify the 418 00:26:46,320 --> 00:26:49,760 Speaker 3: experience of menopause for autistic people. So we wanted to 419 00:26:49,800 --> 00:26:52,040 Speaker 3: talk about, you know what menopause might be like for 420 00:26:52,119 --> 00:26:56,760 Speaker 3: an autistic person, now, an autistic menopause, rather than the 421 00:26:57,240 --> 00:27:01,480 Speaker 3: standard menopause you might read about. We wanted to give 422 00:27:01,600 --> 00:27:08,560 Speaker 3: people stories they could relate to. We interviewed sixteen autistic 423 00:27:08,600 --> 00:27:12,120 Speaker 3: people who were going through menopause or had gone through it, 424 00:27:12,640 --> 00:27:16,199 Speaker 3: and so their experience is embedded throughout the book. So 425 00:27:16,240 --> 00:27:20,760 Speaker 3: we've got all their stories, all their descriptions of you 426 00:27:20,760 --> 00:27:23,720 Speaker 3: know what they experienced and also how they coped with it, 427 00:27:24,560 --> 00:27:28,360 Speaker 3: their advice for autistic people who are approaching menopause as 428 00:27:28,400 --> 00:27:32,359 Speaker 3: well as for doctors. So we really hope it will 429 00:27:32,400 --> 00:27:34,200 Speaker 3: help people feel less alone. 430 00:27:34,600 --> 00:27:38,119 Speaker 2: Nice. Nice, I love it. Now, how do they find 431 00:27:38,119 --> 00:27:38,640 Speaker 2: a book? 432 00:27:38,800 --> 00:27:41,800 Speaker 3: So you can get hold of that anywhere on nine 433 00:27:42,080 --> 00:27:46,240 Speaker 3: and so it will be on your standard Amazon. I 434 00:27:46,240 --> 00:27:49,520 Speaker 3: think anywhere you get books you can find it. 435 00:27:49,960 --> 00:27:52,239 Speaker 1: If you would give our listeners the title of your 436 00:27:52,240 --> 00:27:53,040 Speaker 1: book once. 437 00:27:52,840 --> 00:27:57,919 Speaker 3: Again, Autistic Menopause, A Guide to the menopausal transition for 438 00:27:58,160 --> 00:28:01,280 Speaker 3: autistic people and those who support that's awesome. 439 00:28:01,400 --> 00:28:03,720 Speaker 1: It's just great that you're doing this work and putting 440 00:28:03,720 --> 00:28:06,560 Speaker 1: it out there to help people with that said, this 441 00:28:06,680 --> 00:28:12,560 Speaker 1: has been really good, great information, great conversation. I really 442 00:28:12,600 --> 00:28:15,080 Speaker 1: appreciate you taking the time to join us today. 443 00:28:15,200 --> 00:28:16,679 Speaker 3: Thank you so much for having me. 444 00:28:16,880 --> 00:28:26,760 Speaker 1: Oh it's been my pleasure. Thanks again. Thanks for taking 445 00:28:26,800 --> 00:28:29,320 Speaker 1: time out of your busy schedule to listen to our 446 00:28:29,359 --> 00:28:33,080 Speaker 1: show today. We hope you enjoyed it as much as 447 00:28:33,119 --> 00:28:34,520 Speaker 1: we enjoyed bringing it to you. 448 00:28:36,000 --> 00:28:37,400 Speaker 2: If you know someone. 449 00:28:37,080 --> 00:28:40,560 Speaker 1: Who has a story to share, tell them to contact 450 00:28:40,640 --> 00:28:45,800 Speaker 1: us at why notm dot World. One last thing, spread 451 00:28:45,800 --> 00:28:51,520 Speaker 1: the word about why Not me, our conversations, our inspiring guests, 452 00:28:51,920 --> 00:29:01,160 Speaker 1: the show. You are not alone in this world.