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The Invisible Ones: Autistic Adults Without Intell ...
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Thank you for joining us on what we hope will be an eye-opening exploration of the human experience. I'm Andrea Brownridge. It is our privilege to serve many, and we dedicate today's presentation to Dr. Bernadette Grosjean, who is a fierce advocate and protector in service of so many, including the invisible ones. She's here with us today, but we won't ask her to stand. I was honored to meet Bernadette through a patient experience that I'll one day tell everybody about, but I am super impressed with her advocacy, and she is one of the core members of Autistic Doctors International, and she brought all of us together in order to create this great presentation. We hope you enjoy. Today you will hear from three women physicians and myself. Dr. Karuna Poddar is a dynamic force of nature who is generous in both her knowledge and spirit. I already saw a bunch of y'all waving to her. I've already been like, oh, you got a little posse out there. She soothes me with her calm, her quiet calm on the regular, but she also activates my energy with her tenacity of, you all know we got to publish this, right? You all know we got to publish this. Thank you, Karuna. Thank you. Dr. Charlotte Medley hails from Sweden and the United Kingdom, and somehow is the mom of three beautiful children. I only have one, so I'm tickled how anybody ever gets past one. She has a wicked dry sense of humor and an impressive sense of adventure. I'm still stunned she tackled the New York subway system on like day two, like blows my mind. And getting us started today is my dear friend, Dr. Christina Keiss, who has maintained a busy practice, private practice in Orlando, Florida since completing child psychiatry fellowship in 2009. Dr. Keiss is my polar opposite. She loves exposure therapy for OCD cases, and she demonstrates no signs of time blindness, so you can imagine how we look. A lot of times, I'm there, I'm trying to get there, she's already there. She is the sharpest diagnostician that I know, and she expects her patients to do, feel, and get better. Without any more ado, Dr. Keiss. Okay, again, very excited to see everybody here. We have no conflicts of interest. I'm going to start with an interactive activity. So I want everybody in the audience to think of someone with autism, whether that's a patient or someone they know personally, just the first person that comes to mind. So hopefully you have somebody pictured now, and I want you to raise your hands if the first person you thought of was a person of color. So a few hands, which is good. How many of you thought of a woman? A few more hands. How many of you thought of a white male? Even more hands, which is kind of what I expected, right? So that's sort of the stereotype that exists right now, is either the white male with intellectual disability and high support needs, like a Rain Man, if you're a little bit older, or a white male who's an astrophysic genius, like Sheldon from Bing Bang, if you're a little bit younger. And that's sort of the stereotype that a lot of us have. And so today we wanted to focus on the populations that have been ignored. So I'm going to start with talking about women on the autism spectrum. And just to say that a large number of the autism spectrum population does not have intellectual disability, so about 44% of autistic children and 50 to 70% of autistic adults have normal or above normal IQ. And so my objectives today are to show you that we are, in fact, missing the diagnosis of autism in women, why it matters that we're missing the diagnosis, clues to that diagnosis, and then associated features in autistic women that may be bringing them into your office or your hospital. And one thing I want to mention at the beginning, so in the autism community, there is a little bit of a divide about whether or not we use person first versus autistic identity. So person first being a person with autism, or autistic identity being an autistic person, which some prefer because they see it as part of their neurobiology, it's a part of who they are. So with my patients, I always ask them which they prefer, and then I honor that. So throughout the talk, you'll hear me use both. So I want to start with just common misconceptions about autistic men and women. So sometimes they're the misconception that they don't want to have any friends, they're total loners, and that doesn't mean that's not true. Many people on the spectrum really want to have friends, but may have more difficulty figuring out how to initiate those friendships or maintain those friendships, or their friendships are satisfied by a weekly D&D meeting, and then I don't need a lot of other friendships or time with those friendships. So it may look different, so just because someone has friends or desire friends doesn't mean that they can't be on the autism spectrum. Another is that they don't have empathy. And in fact, actually for girls and women, sometimes it's the opposite, they may have too much empathy, or there may be times where there's difficulty with perspective taking, but once they get that perspective, there's a huge amount of empathy. So again, somebody having empathy does not rule out that they're on the spectrum. And then lastly, if someone makes eye contact, I hear this all the time, then they can't be on the spectrum, and while the majority of people on the autism spectrum prefer not to make eye contact, in your office, in particular, a 15-minute visit, they may be making eye contact, either because as a child they were in social skills group and they've been taught to make eye contact, or they've learned to camouflage on their own, or they've learned tricks that if I look at your nose, it looks like I'm making eye contact with you. So just because someone seems to be making eye contact does not mean that they can't be on the spectrum. And so, and I'd like to reiterate the saying in the autism world that if you've met one person with autism, you've met one person with autism. So it can look different in different people, and so we want to keep an open mind. All right. And so, for the diagnosis in women, so the most up-to-date studies show that the male-to-female ratio is about 3 to 1. In our latest DSM, it says 4 to 1, so we're getting better at picking it up and diagnosing it. I suspect it may be possibly closer to 2 to 1, but we'll see as more studies come out. The adult diagnosis in women is between 31 to 34 years old, so again, evidence that we're diagnosing it later in life rather than catching it earlier. And historically, women who have been diagnosed are generally more impaired and have more accompanying intellectual disabilities, so again, they had to have a more severe presentation for someone to give them the diagnosis. And why does it matter? Well, with anything, if we have a misdiagnosis, we have inappropriate treatment, so it matters from that perspective. And because then the person's difficulties and their level of impairment are missed and they feel really invalidated. Often, people will come in to clinicians, either psychiatrists or therapists or sometimes just their friends, and say, hey, I think I might be autistic, and they're quickly told, you're not autistic. And so that really invalidates them. And then when we don't know that there's a diagnosis, we think that they're being difficult rather than seeing it as someone having a difficulty. And then that leads to feeling not good enough. And if we don't have a diagnosis, we know other labels get placed on that person, right? Either I'm weird or I'm bad or they're antisocial. So having a diagnosis matters. And we do know that in the autism spectrum population, there is a higher suicide rate. So again, it matters to make sure we get this diagnosis. And so part of the reason we're missing it is autistic women will present differently than autistic men. There was a study in 2014 that I really liked where they looked at 51 adolescents on the autism spectrum and 50 typically developing and then gave them friendship questionnaires. Females on the spectrum scored higher, meaning they did better in friendships, than their male counterparts with autism spectrum. But if you compare them to their typically developing females, they did worse. So we don't need to compare female autistic people to male autistic people. We need to compare them to their typically developing females. And it showed that they were about actually equal to typically developing males on this friendship questionnaire. Other ways that they can present differently is females exhibit better expressive behaviors, more reciprocal conversation, more sharing of interests, despite having similar social understanding difficulties. Also, their friendship problems may look different. They're better at initiating friendships, but have more problematic maintenance of friendships. You'll see girls will tend to have one girl that they cling to and can get really jealous if that friend makes other friends, and then that creates the problems in the friendship. Girls tend to be just more overlooked rather than straight out rejected by peers. So they just always feel like they're on the outside. They never quite fit in, can't quite get in the group. And then another small study showed that they had more social motivation on the social responsiveness scale. So again, they are presenting differently. Why that is, is it something genetic, or is it that socially driven that they're sort of taught early on to be more nurturing and better friends? But regardless, there is this difference. Girls also tend to have fewer restricted and repetitive behaviors, and so a lot of the diagnostic instruments will miss them. Autistic girls have different types of special interests. They're not as unusual and tend to fit more traditional gender stereotypes, so like animals and dancing and makeup, and there's less repetitive use of objects. Girls also, more than boys, tend to camouflage, so meaning they use these coping skills or strategies to mask their autistic features. So a way that that was sort of showed that more women than men were doing this is they did the ADOS, so the Autism Diagnostic Observation Schedule, which is rated by an examiner looking at external behavior, and then they compared how they did on the autism quotient, which is a self-reporting scale and a reading the mind and the eye test, which is measuring their actual mentalizing capabilities, and they looked pretty good on the ADOS, but then when you look at self-report, a lot more risk scoring as autistic. So again, more girls than boys are camouflaging typically, and so the ADOS may be missing that diagnosis oftentimes, and thus also clinicians in the office are missing it because girls are camouflaging more so than boys, and we know that camouflaging can lead to more mental health issues and a higher risk of suicidality. We also know that there's male bias in the diagnostic criteria and the rating scales, so as I said, the ADOS may be less sensitive. It's a self-fulfilling research process where the majority of study participants have been males, and so then more scales and criteria are based on the males, and it just becomes a self-fulfilling process, and you can see that in the DSM criteria where one of the examples is lining up of trucks, which is a more traditionally masculine toy, so again, you see how it gets baked into a lot of the criteria and the rating scales that we use. And so you might think maybe we need to consider gender-specific criteria like we do for a lot of other disorders, right? So we define failure to thrive by sex-specific growth curves. We define anemia by sex-specific norms of hemoglobin. We know that women present differently than men with heart attacks. We know that borderline personality disorder can look different in a woman versus a man, and so it seems to be the same with autism spectrum. Also there's a huge lack of training in physicians, which is why I imagine you might be here today. So a 2014 survey of child psychiatry training programs showed that on average, their fellows were seeing at most five patients a year with autism spectrum, which is almost nothing. And then in 2013, pediatric residents were surveyed, and more than half of them described their quality of training on autism as fair to poor. So it seems to be getting better. So a 2019 survey of 89 psychiatry and child psychiatry programs showed some improvement. So if you look at this graph here, the black line is the child psychiatry programs, and then the gray bar is the adult psychiatry. So a little more than 30% were seeing 11 to 20 outpatients a year, 30% were seeing six to 10, and then approximately 16% were seeing one to five outpatients a year for that child psychiatry programs. But again, if you look at adult psychiatry programs, greater than 50% were still only seeing one to five outpatients a year. So even though it's getting better, there's still a lot of us out there that were not adequately trained on diagnosing or treating autism spectrum. Because how many of us here finished training before 2014? So I think a lot of us just don't feel competent, unfortunately. So hopefully this is going to help. So I just wanted to show a picture of a lot of autistic women. So maybe next time someone asks you to picture somebody, you might actually picture a woman. And so hopefully you recognize a lot of the women that are up there. So in the top left, we've got Greta Thunberg, below her, Temple Grandin. Then we've got Daryl Hannah from one of my beloved movies as a kid, Splash. And then we've got Hannah Gatsby, a comedian on the far right. Heather Kuzmich was an America's Next Top Model contestant. And then from my home state, Miss Florida Contestant, who was open with her autism diagnosis. So again, to show you that these women look different. They're doing different things. All right, so how do we maybe pick up on the diagnosis? So just like with any other diagnosis in psychiatry, we use our observations, our countertransference. So really pay attention to if you have an interaction and you're like, that felt awkward. That was a weird thing to say in that moment or a weird thing to do. And pay attention to that, rather than just quickly dismissing it. If you notice that it's feeling hard to build rapport, you've seen the person for a few sessions and you still feel like you don't really know them or know a lot about them. Again, pay attention to that. If they're giving a lot of short answers or you haven't written much in your note, again, that may be some of that limited communication. About 50% of people also on the autism spectrum have alexithymia. So if they're having a lot of trouble describing their inner states, that may suggest maybe they could be on the spectrum. Other sort of mismatches, like they don't look very anxious in your office, but they report having severe anxiety. And you're like, huh, that doesn't make sense to me. But maybe that's because of their limited facial expression. Or if they're describing severe social anxiety, and again, it's your first visit with them, and they don't come across as particularly anxious to you in the body language or facial expression. Or the other way around, you might think, okay, in the first visit, the eye contact's not good, they're not saying a whole lot, but maybe that's social anxiety. But after repeated visits, the eye contact doesn't improve, they don't become more talkative, because maybe they're on the spectrum. So again, starting to pay attention to those things that don't add up and those feelings that you get. Other things that might come up in the history, they might sort of say, I've always just considered myself different, or I've always had trouble fitting in. Really commonly, I hear, I've always done better with people from different generations than with peers. So I did better with people that were much older or people that were much younger. Or I've always been an observer, so a lot of girls who camouflage, observe, or consider themselves an introvert. Or they might say, I always like to be in control, I've always considered myself a leader. That can be some of that trouble with flexibility. Or that they were always told that they were highly gifted, and yet somehow, they didn't feel like they reached their potential, because a lot of people on the spectrum have this spiky profile when you do neuropsych testing. Or they might say, I've just never been able to relate to other girls. So those are some things you might hear. And there's a high co-occurrence of other psychiatric diagnoses that are going to be bringing them in your office. So 74% of autism adults have comorbidities, 71% of autistic adolescents in a big study had comorbidity, a big Swedish study of nine-year-old twins found 50% had four comorbidities. So there's going to be these other diagnoses that are bringing them into your office. The co-occurrence that you might also hear mentioned, which might not be bringing them in, but they might have misophonia, so they hate certain noises that makes them angry, the pen clicking, the husband chewing on ice. They can have synesthesia more often. So the, I see music, I've always just had that ability, or numbers or letters are associated with certain colors. They describe panic attacks, but they happen in these limited situations where I'm overstimulated, it's been a busy day, or I'm in a crowded place, or they're describing some sensory issues or differences, I prefer to wear clothes that are just comfortable, I don't really care about the fashion trends, I can't stand the tags, or, you know, it's too noisy in the movie theater for me. Or you might hear that they complain when they're overwhelmed of going mute or shutting it down, which is what we call autistic shutdown. So this is when you have an overwhelming emotion, and they sort of withdraw into themselves, and they become completely silent, unable to communicate in any way, even maybe nodding their head might feel too hard in that moment, and they might be very still, they might be lying on the floor in a fetal position, and they feel frozen. It's not a willful behavior, they really feel frozen in that moment. Or on the other side, we have an autistic meltdown. So this is, again, I have an overwhelming situation or overwhelming emotion that feels like too much, whether that's a social situation that triggered it or sensory, and I, my emotion goes outward, I feel out of control. So I might scream or shout or cry or get physical, kicking, lashing out, biting, self-harming. So if you hear things like that, that could be a clue. Also unfortunately, there's a high history of sexual abuse and assault in autistic women. So one study of later in life diagnosed women on the spectrum saw that nine of their 14 participants had a history of sexual abuse. Another study of childhood trauma questionnaire showed that autistic women had significantly higher rates of sexual abuse than autistic men, and were more comparable to the BPD group. And so if you look at the studies, about 40 to 80% of autistic women have experienced sexual abuse, unfortunately. And a common thing that you might hear is that they've been diagnosed borderline personality disorder, which can be a misdiagnosis. And you can see how that happens. They have emotion dysregulation, self-harm, black and white thinking, a history of sexual abuse. And so we can see that sometimes they can get this misdiagnosis. not to say that you can't have both, but that's going to be less common. But an inpatient study did show that about 2% of autistic females also had a personality disorder, but oftentimes it's a misdiagnosis. We also know there's diverse sexual orientation and gender variants in women on the spectrum. So there are three to four more times as likely to be bisexual. There's also more gender variants and gender nonconforming feelings. 22% of autistic females compared to 8% of autistic males, more gender dysphoria diagnoses. And I'm giving you conservative estimates here. It is probably much higher depending on which study you're looking at. Also ARFID is very co-occurring. So 8 to 54% of child and adolescents with autism spectrum or with ARFID have autism spectrum. And most of the studies show 40 to 50%. And then 21 to 28% of children on this spectrum are at high risk of developing ARFID. And so ARFID is, you know, they're going to describe it as I eat five foods. I can count them all in one hand. I eat macaroni and cheese, chicken nuggets, pizza, and sweets. There's no fruits and vegetables. There's no meats. I have this very limited variety of foods, which oftentimes is due to texture issues or sort of my world becomes super taste buds. They're just more sensitive to the way that foods taste and feel in their mouth. There's also high eating disorder co-occurrence. So about 4.7% of adolescents with anorexia nervosa also were on the spectrum. Another review showed that it was more like 23% in individuals with any type of eating disorder. So if you are in an eating disorder clinic or a treatment center, that means anywhere from 1 in 20 to 1 in 5 of your eating disorder patients is on the spectrum. So if you work in that field, you should be making that diagnosis. And also 6.7% of autistic adults have anorexia nervosa, which is much higher than the reported DSM prevalence of 0.4% or in some studies 1%. So there's definitely higher rates there. Anxiety co-occurrence is big. So somewhere between 30% to 40% will also have an anxiety disorder diagnosis. OCD also 17.4% and a big meta-analysis of child and adolescents on the spectrum also had OCD. So if OCD is your thing, you also should be diagnosing autism spectrum. 36% of all autistic children had tics, so also high rates as well. ADHD is probably most of you know. There's a high co-occurrence there. A big US study recently showed about 35% of all autistic adults also had ADHD. So again, if you are an ADHD expert, we should also be knowing autism. And then lastly, depression co-occurrence. So 10% of children with autism and normal IQ have depression. By the teen years, it's about 20% that tends to persist up to 27 years old. So higher rates of depression. And there was a study that came out last year that kind of looked at neurodivergent kids and why do they develop depression later on and sort of what mediated that. And it seemed to be mediated by that emotion dysregulation, their peer problems and academic problems in childhood. And I point that out to say that it's important to catch this diagnosis early so that we can get in supports and accommodations and minimize some of those peer problems and academic problems because it matters later on. We want to protect them and protect their self-esteem. So my last slide is just a woman on Google because more and more you're going to have women coming into your office who have Googled autism or saw it on TikTok or was on Reddit and coming in and saying, I think I might be on the autism spectrum. And so I hope that you guys are a little more open-minded that they could be on the autism spectrum and feel a little more confident to say, yeah, let's explore this, that you could be. And my last slide is my cats doing weird things because all cats are on the autism spectrum. And by the way, my cats are named Sheldon and Penny from Big Bang. Thank you. Thank you, Dr. Keiss for such a great presentation. So as we learned from Dr. Keiss, that autism diagnosis is often delayed in women population. Now it's not uncommon for psychiatrists like us to be working with women during their perinatal period or meet parents of young children for those child analysis and psychiatrists diagnosed or not diagnosed with autism spectrum. So these women, when they visit us, they are in their most vulnerable periods of their lives. They may be or may not be diagnosed with autism and may be navigating through their day-to-day challenges, struggling to figure out whether their experiences are unique or uncommon. Our hope is that increasing the awareness of identifying autistic women during their pregnancy peripartum or parenting period can aid in decreasing the complications with this population for gynecologists, opticians, psychiatrists, pediatricians, and all other providers of all other specialties. So the objectives of my talk is going to understand the pregnancy-related challenges and complication in autistic women, understand the parenting-related challenging in autistic mothers, and identify practice management tools to address pregnancy and parenting-related concerns and co-occurring psychiatric symptoms in autistic mothers. So we learned that ADHD and intellectual disability are very common co-occurring condition in autistic population. It is known that women with ADHD struggle with peripartum complications, just to name a few, like related to their blood pressure, related to their blood glucose, anemia, preterm birth or stillbirth, and definitely postpartum depression, just to name a few. It's also known that women with intellectual disability often struggle to follow the instructions given to recognize their own condition and reach out for medical help. They are more likely to experience preeclampsia, just to name a few, and in their infants, some like infant low birth weight, preterm birth, or neonatal intensive care admission or perinatal death. However, very little is known about women with autism spectrum without intellectual disability or other comorbid neurodevelopmental disorders. So autistic women and autistic gender diverse individuals, they may face unique challenges in the domains of romantic relationships and reproductive health. There's a lot of high level of stigma, high risk of sexual abuse, increased psychiatric symptoms, and more unmet needs. It is found in a study by Dr. Lee that when self-injurious behaviors are worsened around menstruation, while they are more often found to struggle with PMDD, the perimenstrual mood dysphoric disorder, than the non-autistic women. In older autistic women, the menopause-related symptoms are found to be higher than the non-autistic older women. That could be a whole round of a new presentation for the whole hour, so we're not going to do the menopausal, but we are going to stick with the peripartum and the parenting women. So in this presentation, we will attempt to explore the influence of the autistic symptoms of social communication difficulties, cognitive inflexibilities, repetitive behaviors, and sensory processing difficulties during the peripartum period and as a parent. So it is observed that in pregnancy, the pre-planning period, before even the conception, the mothers, they often struggle to even conceptualize this pregnancy, and for themselves, and also for planning this perfect pregnancy, and this fear of having this autistic child, and things to expect in the life if they had another person in this earth who was like them. It is not clear, though, if there is any delay in planning for a pregnancy, however they are observed, to struggle communicating these concerns to their providers. So once they are pregnant, they are known to have worsening of their sensory processing difficulties more than the sensory alteration in the non-autistic pregnant women, which are related to smell, taste, aversion, or the disgust response. This might impact the pregnant mother's ability to respond to her own body's need during pregnancy, leading to a reduced awareness of the physical changes or potential complications. So due to that, what happens is a lot of these autistic mothers are judged being very difficult. This may induce worsening of their anxiety for even visiting their provider's office for a routine prenatal visit, or delaying a seeking care when they need them urgently or in an emergent case. So how does the cognitive flexibility and the psychiatric concerns affect the other prenatal times? It's observed that autistic women find the transition and the unpredictability around the prenatal sensory symptoms or other psychosocial challenges very difficult to manage. And this potentiates the worsening of their anxiety and peripartum depression, mainly the prenatal depression that can happen. The other co-occurring prenatal-related concerns was studied by a Swedish study by Sundalen, where it revealed an increased risk for preeclampsia amongst the autistic pregnant women. And it's speculated to be due to an altered immune response in the autistic people. Now, they did not find a worsening of gestational diabetes in these women, but we know the psychiatric manifestations of uncontrolled preeclampsia and eclampsia. They are like mania, psychosis, depression, and the unknown neurodevelopmental effects that could happen in the fetus and the infant bond. This really informs us to monitor for the vitals and any physical symptoms of preeclampsia in every visit, even if this autistic mother comes to visit her psychiatrist. It's important for us to be aware about asking her any symptoms that are physiological that she may not be aware of what's going on with her. Now let's move on to the birthing time, the intrapartum period. The birthing room, the sensory overstimulations are really anxiety-provoking for all these autistic mothers. A study observed that while the autistic people are more sensitive to the sensory input, like we just saw Dr. Kaj mentioning about it, including to the pain, to the touch, to heat, they seem to have a very high tolerance for the intraceptive pain, though. So although we use pain scales to determine the level of pain, the alexithymia that we just learned, too, which was an inability to correctly interpret their internal state, it affects the effective communication with their healthcare providers, thus the women not receiving enough pain control during this time. I would like to take an opportunity here to talk about my case. I had this woman who was autistic, but when I had sent her for an ADOS testing, got diagnosed with OCD, which is, again, very clearly known. This woman was in labor for 48 hours before she even realized that she was in labor pain. She just thought this was some kind of a back pain, and when it was beyond control, went to the emergency room, found to be eight centimeter dilated, just ready to pull out her baby, and she couldn't even effectively communicate to the provider what's going on with her, and there was no pain control offered for her. She was isolated in a care just because they also found out she had COVID, and she could not communicate any of her challenging needs to have a proper management at that time. So it is possible that in spite of this high level of pain during the birthing process, the relative blunted outward expression of the woman, it lacks the, and the capacity to not have that effective communication with their healthcare providers makes them being misjudged. You would also, it's also been observed in birthing process that this compensatory repetitive behaviors, which are more like for their own soothing, are often misinterpreted, and these mothers are considered to be confronting, being difficult, or being unconcerned for their babies. It's observed that autistic mothers, they expressed having difficulty with the entire process of birthing because they didn't have enough knowledge of what is a birthing process, what to expect, because that was not explained in a way that they could understand. The literature also shows that autistic mother tend to lack trust towards their providers, and they have worsened anxiety or increased feeling of being judged, thus a kind of a symptom of social anxiety that you may feel. But this is again due to the lack of effective communication and the other, the counter-transference of being misinterpreted as a difficult person. So what are some of the other co-occurring interpartum concerns? So in addition to the autistic symptoms, which are the underlying, they also are observed to have a higher rate of pregnancy-related complications. However, there's no increase in emergency cesarean delivery or low APGAR scores found, but there are more medically indicated preterm births that are observed in these women. Now I'm going to take your attention to the next part after the birthing, which is the postpartum period. Autistic mothers, they're observed to have an increased risk of postpartum depression and anxiety than the non-autistic mothers. They appear to have an overstimulation in the immediate motherhood period. That could either be because they have a lot of social support or because they don't have a social support at all. And this is likely because they feel very uncomfortable expressing their inner feelings or the things that are happening internally that they are not able to communicate effectively outside. They feel very difficult also to express their inner feelings in front of a lot of people. I would want to draw your attention to breastfeeding in the postpartum period. A study done by Pohl et al. in 2020 found no significant difference between autistic mothers and non-autistic mothers breastfeeding their infants. In fact, it's found that autistic mothers might value their motherhood only if they are breastfeeding their infants, and if for any reason that doesn't go right, they devalue themselves and have a lot of increased postpartum anxiety because they feel they are harming their child by not breastfeeding effectively. There are also some autistic mothers who have these peculiar sensory perceptions, and this article by Grant et al. quoted this mother saying, I had an old-fashioned telephone ringing in my breast. So that sensory processing was so intense that it just felt very difficult for this mother to cope with that sense. Some parenting challenges. So we're moving now, as an immediate postpartum period, you're also a parent. So how do you manage this challenge with all this overstimulation that is happening, first with being a new mother, two, trying to breastfeed this kid, and now I'm having a more parenting challenge here. So some parenting challenges are noted typically around social communication, in addition to the overstimulation and the sensitivities with the sensory perceptions of this young child. However, as parents, autistic parents, they are, they really feel the love and the concern for their baby, and they always put their child's interests before their own. I want to draw your attention to this report of an article that was published in Metro UK, and also there was a Twitter or a social media post about it. This was about a young autistic mother whose parental rights were disregarded just because she was autistic. Do you want to make a guess? I mean, it's up there, but this mother, she died by suicide because her rights were terminated. So this lack of awareness of someone who is autistic, but completely able to care for her child and her rights being taken away. So we have a lot of advocacy work to do as a reproductive psychiatrist, perinatal psychiatrist, or child analysis psychiatrist. So it's such important to be aware of these women that come to our clinics with their children. The other parenting challenges beyond postpartum period are typically noted more so in mothers than in the other parent. Symptoms of alienation, guilt, depression, loneliness, inadequacy when comparing themselves with the other parents. And this may be partly because the parents on the spectrum, they tend to take parenting seriously. For them, everything is by the books. So if they are not by the books, they are not being good parents. So imagine the amount of anxiety and the stress that it puts on these parents. And they often feel that they're incompetent and emotionally lacking because of their own autism. So we're going to talk about some practice management tools here, and we propose the use of autism-informed women-focused care to help these women feel in control and respected. Some strategies to be aware about autism meltdown and shutdown, and to support them with these controlled consistencies, like maintaining the same staff, improving clear, literal communication, and collaborating with family members based on the women's choice. We also propose that some other autism... We also propose some other autism-informed care tools, like increasing the education and awareness amongst healthcare providers about autistic women and mothers, provide sensory support spaces in your offices or in your healthcare delivery arena, meeting mothers with their children, whether you treat the mother or you treat the child, but considering dietic form of treatment. We recommend reading these books, which were written by autistic mothers, and reviewing the video on the YouTube link. I think you all have these slides available on your app. So you would have the links to these YouTube video. And thank you so much. I shall now invite my colleague, Dr. Medley, to talk about autism and addiction. Thank you very much, Dr. Pouda, and good afternoon. So the theme of this year's meeting is addiction, and of course we wanted... Is it better now? No. Now? I'm a bit quiet, so please tell me if it's too quiet. The theme of this year's APA meeting is addiction. So we included a session on autism and addiction, because we wanted our submission to get accepted. But is it even a clinically relevant issue, do you think? Do autistic people, do they actually go out and drink? Do they take drugs? Well, they do. The answer is yes. So that was good news for our submission. It's bad news for autistic people. However, it's a very under-researched area. Those studies that do exist often give really quite contradictory results. So it's hard to give reliable statistics regarding the extent of the issue exactly. What's becoming clear though is that substance use and dependence is a significant issue for some autistic people and not for all. Autism is strongly related or associated with ADHD. ADHD is a well-established risk factor for addiction. So this does go some way to explaining the issue. However, studies have found that autism itself, even without ADHD, is related to problematic substance use. However, as this link is less well-known, emerging addictive behaviors can be missed by autism teams who might think that their patients just don't drink, don't take drugs, and addiction clinics might not even consider and address autism in their patients. Gambling and internet addiction has also been found to be a significant comorbidity and has been covered earlier in this conference. And unfortunately, we don't have time today to discuss. As mentioned before, results of studies have found really quite contradictory results. These were two that I printed out and had next to each other to read. Sorry. Hello? You can hear? Okay. But I have tried to gather some trends as far as was possible. And one large Swedish population study, Sweden seems to be really good at researching autism. They found that autistic people, they separated out and ones without ADHD had doubled risk of substance use related problems compared with non-autistic people. It was even higher in people with autism and ADHD. And even the relatives of the autistic people had some degree of increased risk indicating a possible biological link between the autistic traits and the problematic substance use, which was stronger when you had more autistic traits. Autistic people often start drinking at an older age and they may be older when they develop substance related problems. Rates of problematic alcohol drinking continue to increase with age, whereas in non-autistic young adults, it reached a peak earlier. This can be because as teenagers, they might be more introverted, they might be less likely to be out socializing with peers and they're also less likely to be risk takers, which means they have less exposure to alcohol and drugs. Autistic people are also, they are more likely to be de-totalers, non-drinkers than the general population, but this doesn't necessarily lead to better mental health. One study is Bari et al, they compared autistic non-drinkers, non-hazardous drinkers and hazardous drinkers and described a U-shaped pattern whereby the participants who drank moderately had the best mental health and the fewest autistic traits. Both being a non-drinker and a hazardous drinker indicated more mental health problems and was associated with more autistic traits. The big issue that comes up constantly is the use of substances as a method of self-medication of anxiety, stress and depression. Autistic people can find social situations immensely stressful and anxiety-provoking and alcohol can dampen that to the point where they feel like they can't actually function socially. It can make it easier to fit in, it can make it easier to camouflage or mask, as we talked about, and to be kind of chatty, and drinking is just seen as normal and they feel like it kind of hides who they are so they can't participate. Anxiety and depression are really common comorbidities. Autistic people have a lot of stressors to contend with and are more likely to have experienced trauma in the past. In addition to this, many struggle significantly with sensory differences and stimulus overload, such as noise and light and smells, which they also self-medicate. And then many autistic people in the literature have described for the first time when they drink alcohol or the first time they were prescribed opiate painkillers, just a sudden and enormous relief from their stress or their anxiety or their sensory difficulties, and that really got them hooked. Then there's also a cohort of autistic people who may struggle to fit in, some that can be socially naive and not notice they're being taken advantage of. These people can be a really easy target for abuse and manipulation and can also lead to them more easily finding their place in a group of outsiders where drinking or drug use might be the norm. And then for other people, the repetitive and ritualistic aspect of substance use is also a key factor in maintaining the substance use. However, many autistic traits are, of course, protective against substance misuse. Autistic people tend to be rule followers and low-risk takers, which obviously reduces the chances of trying illegal drugs in the first place. Cognitive rigidity is common, black and white thinking, and that might inhibit your alcohol consumption if you have a strong belief that alcohol is bad for you and I will never do it. And then there's also autistic young people who have higher support needs, who might lead a more sheltered life, might have more higher levels of parental supervision, and that kind of means they're a bit more protected and have less access to alcohol and drugs in the first place. And why is it important? Failing to identify our patients as being autistic, whilst treating them for alcohol or substance misuse, is a huge missed opportunity for help and understanding, can result in misdiagnosis with other psychiatric diagnoses. It can cause a raft of communication issues. The patient's frustration and behaviour can be misinterpreted if we don't understand the cause. Information can be presented in a way that the patient just doesn't understand or can't utilise, and there frequently that lack of understanding is misinterpreted as obstructiveness or willfulness, which then in turn leads to the patient feeling invalidated, misunderstood and hopeless, and subsequently disengaged from treatment and from the treatment professionals. We need to adapt the communication style, be more clear and explicit, provide written information, probably with pictures and diagrams, and most importantly, allow time and clarify that they have understood the information as you intended it. Any treatment involving groups can obviously be highly stressful. An autistic person might struggle to fit in, they might misinterpret the social cues from somebody else in the group, they might take things literally, and it can lead to either conflict or feeling outside or like a perpetuation of issues they've had previously. However, one of the strengths for many autistic people is their tenacity and determination to succeed, which can lead to great accomplishments, including recovering from an addiction. Identifying autism allows for psychoeducation and focused psychosocial support. The improved insight into their life and difficulties can help many patients, and some describe that this understanding and acceptance makes a huge difference and enabled them to stop drinking. This understanding also enables the treating team and the patient to identify and treat causes of anxiety and stress and make environmental adaptations which can reduce the need for self-medication in the first place. CBT has had promising results when it's adapted to the autistic individual who generally needs more sessions than other patients and should also have access to autism, psychoeducation and support at the same time. And it's also really important and has been found in studies that the therapists have had recent education in autism. A final thought in a book on addiction in the autism community, these authors, Kanritha and Palmer, hypothesise that addiction seems to be more common, they think, in undiagnosed autistic adults, possibly due to the stress of struggling with life and social situations without awareness and understanding of their autism, which is another reason not to miss these patients. And I'll finish with this quote, which is from a site on social media. But why do you need a label? Because there is comfort in knowing that you're a normal zebra and not a strange horse, because you can't find community with other zebras if you don't know you belong. And because it's impossible for a zebra to be happy or healthy, spending its life feeling like a failed horse. Thank you very much. These are the only two books I found, so that's what there is. The purple book is the one I mentioned, and the other one is a bit old, it's from about 2000-something, written by a man who discovered he was autistic after developing an alcohol addiction. And I need to thank my employer, because it was really expensive to come to New York, so I'm very grateful to them, my supervisor, Dr. Andrea Capuzzon, and to Dr. Bernadette Gauchon. And our references are available, I think. And I'll hand back over to Dr. Brownridge. Thank you. In the same vein as Driving While Black, a 2020 PBS documentary film, my objective is to explore the world of autism as experienced by people of color, primarily black people, but also touching upon the exposures of other communities of color. Why should we care? A disproportionate number of black youth and adults on the spectrum, never before or later in life identified, is absolutely consistent with every disparity in the United States of America. I imagine that a number of my black colleagues in this room were hearing some of the stats about maternal health and thinking, good gracious, that's a common experience for black Americans to find that if it's a problem in a particular community, it's gonna be about eight times a problem in our community. The heterogeneity of black culture combined with the cohesion of the black experience in the United States of America can make things a little bit challenging in order to identify as being on the spectrum. I've been in private practice since 2015 in Orlando, and I've been blessed to have about eight cases where I had young black youth where I was able to identify and recognize that they were in fact on the spectrum and able to encourage their families and more importantly, help them begin to better understand themselves. I personally am not on the spectrum, but I'm very vested in the community who knows a host of reasons. So in order to educate myself, I spent a lot of time on the blogs and I wanted to share things that I discovered actually during July, 2020, when George Floyd was killed. The one on the right says, I might be autistic exploring and accepting my autism. I was sitting in the front seat of my then boyfriend's car when he looked over at me and said, sometimes I think you might be autistic. I said, I could be. I did not know then that the fact that I did not deny a label that was meant to dehumanize me was further proof that I was most likely autistic. The article to the right, dear fellow, actually let's see if I can pull it up. Dear fellow black autistic, your autistic experience looks different. Defining myself as opposed to being defined by others is one of the most difficult challenges I face. Being black and autistic means being on display. It means being barred in the world, born in the world like a frog on the dissection table. It means white people and autistics running everything in the autistic community because they shape that world and the movement in their image. And you might think it's up to you to get right or get left behind. You might even know you're autistic because of how separated that dominant narrative is from blackness. Stemming can look so varied based on culture and so wonderfully and uniquely black. From picking your Afro because of the motion is smoothing, soothing, to twerking and playing with your braids, to repeating that one itch, scratching line in the rap song you love over and over again. It's the way that you put on lipstick and the way that you put on makeup and the way that you put on makeup over and over again. It's the way that you put on lip gloss even though you put it on three minutes ago because the motion is soothing. It's the smell and the motion of lathering yourself in lotion and body butter. This is what I discovered from my patients that confirms this. It's also important to recognize that in all cultures, there is just a unique, sometimes sensory food experience. In black culture, that could be challenging. I've had one youth who was originally from Jamaica and it was interesting because when I spoke with her mom, I've seen her about eight years, her mom, it was difficult for her because she was never able to embrace the rich culture of the food and the color and everybody in the family just always knew she was different. Once I began to explore and we talked about it, it made sense, that was a lot for her to manage. And so going home to her family's home country was very challenging and as Dr. Kice described, she would often experience an autistic shutdown when she went to Jamaica. But the beauty of it is when we are able to identify and connect the dots, that is what we really hope that you all take away from here, making that connection. Stigmas and stereotypes. How people of color across the globe manage brain, mental health and illness are challenged to not have one more thing to deal with. Many a parent has told me, oh, Dr. B, come on. You wanna add that on? And the goal is to recognize this is their identity. It is not a diagnosis. We call it a diagnosis in psychiatry. It's not a disorder, it's another way of being. And with that language, it becomes powerful for these individuals to find comfort in understanding more about who they are. Combined with humans' tendency to stigmatize, criticize, otherize what has not evolved, what it has not evolved to comprehend leads us to develop stereotypes. Stereotypes can be protective. They can also be incredibly oversimplified and dangerous. Examples of this we can find in the black community is minimal facial expression in a black autistic woman can further add on to the stereotype of the angry black woman. It can be difficult to code switch, which is a common cultural adaptation we all do, but it can be very challenging for some of my patients on this spectrum to do that. Difficulty shifting your behavior based on the context. It can also, of course, lead to the over-diagnosis and misdiagnosis of borderline personality disorder. That's how I know Dr. Bernadette. She saw a patient who moved to California, called me for a collateral. And the minute she said, did you ever think she was on the spectrum? I said, oh my God. Immediately, it was a light bulb moment. And I even looked at my notes and I had it on the initial evaluation. But just to show how this conversation is so important, I remember ruling it out in my head. I didn't document it because she was very attractive and she masked very well. But as I couldn't quite figure out why she was struggling so much, but Dr. Bernadette made the diagnosis and the minute I heard it, it was like, ding, the light bulb moments are produced by these conversations. To be pro-neurodiversity is to be anti-racist. This comes from my favorite blog on neuroclastic.com. And it was during July, 2020 with George Floyd that the autistic community really, they blew me, I was always vested, but they got it. I could go to this blog and understood that being on the spectrum was probably the best chance of us saving the globe because there was just a lack of dedication and conformity to social norms that makes those on the spectrums often be able to embrace everyone and it's powerful. And this was one of the documents that they produced. Black excellence on the spectrum. I think it was actually Dr. Charlotte who shared this with us. It was from about seven years ago, but Professor Jason Arday at 37, I think again, he's probably 47 now, highly respected scholar of race, inequality, and education did not speak until he was age 11. And now he is a professor at Cambridge. And there's a lot that goes into the context of what was going on, why he wasn't speaking. I've certainly learned that my nonverbal patients who are on the spectrum, they have lots to communicate. We just have to tap into it. We just don't know their language. They know ours. They just choose not to use it. Makes sense to me. Delayed identification while black. Here we see Holly Robinson-Pete, the actress and the wife of a NFL player. I don't know how many of y'all watched a reality TV show, maybe two seasons, maybe HBO, but she shared publicly her journey because she recognized by the time her son was two that he was different, but her mother and her husband were like, he's fine, he's fine. And it was a very classic conversation that can happen. But she fought tooth and nail, ignored them and got him the resources he need. And again, it's not a disorder. It was another way his brain worked. Therefore, he needed certain resources in order to be able to optimize working in this world that's not designed for how he thinks. And then additionally, on the far right, I follow her greatly. She is an attorney that you'll often see on any host of channels when there's something going on with criminal justice. And she shares that her son is on the spectrum. And I think it was just important to make sure we're seeing these depictions. There's no doubt the diagnostic timeline to get a diagnosis of autism spectrum is certainly delayed. Reasons are minority parents are less likely to contact a healthcare professional for ASD related concerns compared to white parents. It may take years to wait for a formal diagnosis. I certainly see that. One qualitative study noted that parents, black parents reported there was insufficient education and training for autism spectrum for black parents. Healthcare professionals being unresponsive to the concerns of black parents. And healthcare professionals having a poor knowledge of the autism spectrum diagnostic criteria. The mean age of diagnosis was more than three years after parents reported having initial concerns for the black youth on the spectrum. So there's work for us to do and it starts with us educating ourselves. Researching autism while black, there is a void of black autism researchers and a greater need for more physicians with whom patients across all diversities of human experience can identify and relate. The black research and autism, of course will make a tremendous difference in how we get the community built. And I've included some reference articles where you can see there are four black research women who are doing good work. But you'll see a link to that so you can learn more about them. And my last slide, surviving while black and autistic. This one always hits hard every time I look at it. It hits hard to the soul as it should. Black girl magic and black boy joy are tag phrases that we use in the black community on social media in order to celebrate our young black youth who are often placed in predicaments where they're expected to conform in ways that a white youth would not be able to. So black girl magic, black boy joy, when you think of that, think about the innocence of a child because that's what it means to us. But black boy joy is particularly marginalized and these are a limited number of the tragedies and horrors that befall our greatest treasures. And I just highlighted these. I have the articles in the link that you're gonna see. All of them are powerful. But Elijah McClain is the one that always holds dear to my heart. And for those of you all don't know, in Colorado there was a paramedics, he was administered the ketamine dose that, it killed him, they killed him. I wanted to end with this slide because Elijah was a devastating case. When you hear the audio, for those of you who understand the spectrum, you immediately are like, oh my God, he's on the spectrum. Why are they treating them this way? He literally says, I'm different. But there are other cases. There are so many cases. And this is a criminal justice system issue but our youth on the spectrum, our black boy youth are getting, they're suffering 10 times even more than a black youth not on the spectrum. And so it becomes critical that we address the spectrum but then we also tackle the criminal justice system. And it all goes because they are not the invisible ones. That's black boy joy. And if you can see him, then you will be able to see the humanity in all of us. If you all take a picture of this link, I'll be updating it. And then you'll also, I don't think this link is gonna be in the PowerPoints but if you just take a picture of the link, it's my Dropbox. It has all our references but I have a bunch more to add tonight. Thank you. Oh, I'm sorry, y'all. I got carried away. Okay. And questions while I get that right back for us and I'm gonna make it. Questions, comments? Who else? Oh, yeah, we got one. Thank you for your great talk. Had a couple of questions. One is about, you talked about the postpartum. What is the risk of attachment disorders with children and how is it dealt with, especially because of the eye contact and the predicting next development. That's one. And the other is, do you all think that the spectrum is growing because when I used a lot in explaining to residents using the big bank theory about the, certainly everybody was in agreement that Sheldon had a disorder but his friends had a lot of quirkiness. They had a lot of social deficits but nobody thought that they were in the spectrum. But it just seems to me that now that spectrum is growing and that maybe people would think that some of them were. So just, that's my question, thank you. Thank you for that question, a very interesting question. I'm gonna take the first part of the question with the postpartum depression and the attachment percentage. I'm not able to remember on top of my head the exact percentage but the attachment in the postpartum depression is pretty much similar to a autistic mother as it is in a non-autistic mother. And the experience is based on their experience as a child. So pretty much goes with the theory of the attachment where the mother carries forward her own attachment theory as a young girl, as a mother, that she has an attachment with her child. And there has been some studies which is done as maternal fetal attachment studies where they have started to look into the attachments while they are pregnant compared to the postpartum attachment. So pretty much it's equal in both the population. And in terms of whether the spectrum is expanding, I would let Dr. Brownridge wanna answer that question. Dr. B has her own little personal theories. So I like to say we probably all have Uncle Eddie somewhere who stayed hidden in our families who didn't come out that much. And he was probably on the spectrum. And now with our society, I do feel like people are, maybe because of technology, people have come out of their protected cocoons. And now I do think it's increasing, but I think it's increasing because frankly, only my autistic counterparts are procreating, hallelujah. So that's what I think. And I regularly see it with parents. I diagnose kids and then mom and dad are like, you think I'm on the spectrum? And I give them a little smile like, I think if you're asking, we should explore. And so I, and I think they're meeting, you're meeting your people, you're meeting your tribe. And so I think we are seeing the numbers go up and it's awesome. Can I add something to that? I think as we're identifying more people, and I think one of the, well, one thing is, you know, does it matter? Because obviously lots of people think, well, you know, you had, there's plenty of people who've always been, have had these traits and there's still people who are perfectly happy. And yeah, I mean, they don't need to come to a psychiatrist. I think if people are coming to a psychiatrist, there's quite a lot of hurdles to come over to get to a psychiatrist in the first place. There's potentially a lot of those people were not perfectly happy, that they have had like, they've had a lot of mental health problems and difficulties that haven't been recognized. And then the other, the other issue that particularly, I don't know how much of a problem it is here, but in Sweden we're making that, society is also changing. In the school system where I'm from or where I work, children now have to perform, they have to basically perform socially in order to get the top grades. It's no longer just you go and do a written exam. There's like group work. They have to like, and that's a problem. And so the environment they're in is different these days. Thank you guys for this just absolutely amazing talk. As a general adult psychiatrist who trained before 2014, I had very little exposure to autism adults in my training, but clearly I'm having people that I'm gonna see in my clinic. And one of the things I'm sort of struggling with and I'm interested in how you guys, when you're interviewing a new patient and doing a workup, autism spectrum disorder in a woman can look very similar to perhaps social phobia plus ADHD, which is a reasonably common thing. I'm looking back on it. I'm sure there are times where I missed the boat on that. And I guess I'm curious, what are the things that jump out for you guys when you're doing these workups? Thank you. So I think for me, one of the things that's most helpful is I'll ask them, how do you feel when you're making eye contact? Some will say, oh, I feel fine. It's just when I'm really nervous meeting people. And those on the spectrum will say, oh, I really don't like it. Well, why not? It just feels weird. It just feels intense. There's just something I've never liked about it. So that to me always helps sort of differentiate that. And then I just, I ask generally about like, their friendships, like how has it been making friendships? Has it been hard to fit in at times? What made it hard? And again, with social anxiety, a lot of times they'll say, well, I just get nervous about what to say versus on the spectrum. They'll tell me like, I just literally don't know what to say. I don't know these people and I don't know what they expect of me. And so when you really probe, you get different types of answers about to distinguish between social anxiety or spectrum for me. Does anybody else want to add on? Yeah. Also, I'd add on really important with developmental history and a detailed developmental history. And it's sort of open-ended and qualitative and asking people really how they were as a child. And quite often, if you just ask open questions, you get quite good information. So one young lady I met recently and I think I asked how she was and she quite, so she had not, we hadn't really opened the idea of autism yet, but she soon said, oh, and my parents were worried when I was going to start school because I thought backwards compared to other children. And people will like come up with all these things. Another young lady I saw said, oh yeah, my friends always said I had a poker face when I was growing up. If you kind of ask more questions, because autism, it will have been present since they were young children. And yeah, was the collateral history really important from the parents? I just wanted to add a little bit to that. I think most of the time, as Dr. Medley just mentioned, the developmental history really helps us to differentiate between the social anxiety, whether that begin more as a middle schooler, as a high schooler versus this was more present in the early child development period. And if we wanted to strictly meet with the criteria for autism spectrum, we also needed to know, if you felt that anxious, what did you do? What was your coping behavior like? And that's where your repetitiveness and the compulsive behaviors come along. So if there was some soothing behaviors that they had, it kind of fits in more in the autism spectrum arena rather than it would fit in the clearly just a social anxiety arena plus with the ADHD. So that has something that has been working with me, but just been asking questions. And one thing that might be a little bit that pours a little bit more challenge is trauma. And how does the trauma play a role in diagnosing somebody with an autism spectrum in the early childhood development versus later on having a lot of repetitiveness or OCD-like behavior just because of trauma? So those are kind of thin lines that needs a lot of time. So we often keep both options open for them. And as we keep working on and getting a little bit more history and feeling whether they feel that this might be what it is, and then go forward with that working diagnosis. Thank you for that question. Oh, thank you so much. I think this, and it's so wonderful to see the room full of you all this Wednesday afternoon. It's rare. And I think it's really telling us how important it is. I want to answer a little bit as why we have these autistic people coming out of the wood, right? And I think one of the issues is also the change in the DSM nomenclature. I think people may be less uncomfortable except it's Asperger, and we know that they collaborate with the Nazis, so we cannot use that word anymore. But I think the word Asperger, meaning adult autism without intellectual disability was something psychiatrists were a little more comfortable with, except it was young white men, right? So suddenly, and we see the numbers from one to 10, maybe two, three women for, one woman for two or three men, the number of women who are identified now is increasingly important. So that's also a reason why, oh, they are different, let's look at them. Another reason is I think thanks to the fact that we provide education to children who wouldn't talk. We were thinking they had intellectual disability. The nonverbal population of autistic people a lot, and we know once they have tablet and they can communicate, they don't have intellectual disability. They have a problem in communication. These children, thank goodness, went to schools. We didn't institutionalize them or they disappear and nobody would have known what the potential was. So I think there is a lot now, many couples choose one another more, right? With similar interests. So I think there are a lot of factors. And I think what's very important, why do we need to differentiate? I was a specialist of borderline personality disorder so for 30 years. And 10 years ago, I realized a lot of these women would come, DBT didn't work exactly, therapy didn't work exactly. There was something different. And ask neurotesting for some patient, which I did three times in my career. And autism came up. And in 2015, it's a big article about the last generations. And if you know what you're looking for in terms of cognition, in terms of sensoriality, a lot of patients were identified borderline. Schizophrenic, catatonia, we speak about all that. Not down in an emergency room, they're bipolar. If we look better, if we have this way to look at it, we can really see many, many more person. And I think it's better for everybody. Thank you. No, no, no, of course. Thank you. And I have included in that Dropbox some questions I ask. I like to have fun in the office. And I became a child psychiatrist in order to better understand my adults. So when I'm meeting with an adult, I regularly tell them, Dr. B's gonna go digging in your childhood. And that's when I can find it. So I will usually ask about, tell me about how holiday get-togethers were. That's always a zinger, because it's people, it's a lot going on. I knew when I asked, and I'm not saying this is path-pneumonic, y'all don't, do you have a favorite number? Every one of my women on the spectrum, maybe my guys do too, they have a favorite number. I love it. We laugh, because they have one. It can be eight, it can be four. And then I ask them, what is it about? Somebody just asked last week. She was like, four. She was like, I like the symmetry. I love those moments. Okay, next question. Hi, thank you. I apologize I came in about 15 minutes late. So you may have addressed this in the first 15 minutes, but I'm an adult outpatient psychiatrist. And when I'm thinking about, is this possibly a patient who might have some autism, and they're now maybe 40 years old, and no one seems to have said that to them, I struggle with, what am I supposed to say? So I wondered if you could address that. So I sort of gauge with each patient. If they come in and they sort of already suspect, I'm pretty straightforward. But if I think they have no idea that they might be on the autism spectrum, I might wait a session or two, one to just confirm for myself. But then I explore more and more each session, some of the social difficulties. So they kind of then get a sense of where I'm going, because that's where I'm focusing. And then I'll just kind of gently ask, have you ever wondered if you might be on the autism spectrum? And sometimes it's like, yeah, I kind of have, or no, but maybe, and then I just open the conversation. But I really kind of gauge where I think they're at. I have had two experiences like that, with one who completely accepted that, yes, there is a possibility, whereas the other who changed her psychiatrist. So I think- That's what I'm worrying about. Yes, I completely agree. But it is also related to the psychoeducation and the awareness. And I think as the years are going by and with all our efforts together and improving our own education and awareness, I think we can help these individuals feel more comfortable under their own skin and help them understand where they're coming from. And we are here to support them and not stigmatize them. Thank you. Thank you. So this is a follow-up sort of to other questions that were recently asked or raised. As psychiatrists, we learn to consider differential diagnoses. And if it's not in the dictionary, so to speak, of diagnostic possibilities, we don't consider it. And another thing is that if you're not a child psychiatrist, you're not likely to consider it either. Higher functioning adults, for example, people who've made it through medical school, mask, maybe, or are odd. There are a lot of highly intelligent people who are quirky and may have learned to adapt. And the reason it is important to identify it, at least one of the reasons, is that people who've made it that far or gone in different directions, there's a lot of cumulative damage from not fitting in socially, feeling awkward, not having kept a job, not having known that they might offend someone and lost a relationship for that reason. And so it helps to have experiences put in that framework to sort of do some, it can be healing to reframe. Thank you. Any other questions? Okay. Yeah, you can talk. Yes. Thank you for the last comment. And I want to say that indeed, there is actually a group called Autistic Doctor International, which is more than 1,000 physician specialists. Second group, by the way, after primary care doctor are psychiatrists. You Google Autistic Doctor International.com. There are a lot of publications. It started in England in 2018. And there are a lot of support, self-advocacy, but we've been, I'm part of it, we've been published in the Lancet, in the British Journal of Psychiatry. There's a lot of things changing there. And you can really have access to a lot of information starting there. So, oh my God, I cannot see you. Thank you all. Be there. Thank you everyone for coming. Thank you.
Video Summary
In this presentation, the speakers delve into the complexities and nuances of autism, focusing on underrepresented groups, particularly women and people of color, who face unique diagnostic and social challenges. Dr. Bernadette Grosjean, a trailblazer in autistic advocacy, is noted for uniting a diverse group to illuminate these perspectives. Highlights include how autism is often overlooked in women due to differences in symptoms presentation compared to men, leading to misdiagnoses such as borderline personality disorder. Women on the spectrum are less likely to meet traditional diagnostic criteria, which are biased towards male experiences of autism. This underdiagnosis results in inappropriate treatments and feelings of invalidation for those affected.<br /><br />The presentation also covers the intersection of race and autism, particularly the delayed diagnoses in Black communities, where cultural and systemic barriers exacerbate challenges. The speakers emphasize the critical need for autism research to include racially diverse populations and stress on how culturally specific behaviors might be misinterpreted or pathologized by clinicians unfamiliar with the diversity of autism presentations.<br /><br />Dr. Christina Keiss shares insights on how sensory preferences, repetitive behaviors, and unique social interactions might manifest in women, while Dr. Charlotte Medley discusses autism and addiction, suggesting that autistic individuals may use substances to self-medicate for anxiety and sensory overload. Barriers to diagnosis and treatment include a lack of clinician training in identifying autism, especially in adults, as they often look beyond traditional psychiatric training.<br /><br />Overall, the session underscores the importance of a nuanced, informed approach to autism, challenging stereotypes, and advocating for greater awareness and understanding within medical practice and the broader community.
Keywords
autism
underrepresented groups
women
people of color
diagnostic challenges
Dr. Bernadette Grosjean
misdiagnosis
race and autism
cultural barriers
Dr. Christina Keiss
sensory preferences
autism advocacy
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