Girls and Autism: What's the Difference with Sarah Hendrickx HD

off we go in that case yes well the well Helen I just started hello welcome to the girls and women and autism seminar today my name is Sarah Hendrix and I'm going to be delivering this seminar for you today so the plan for the session that we have I'm going to tell you a little bit about my story Who I am professionally personally how I ended up doing doing what I do we're going to talk a little bit about some background around research and diagnosis for girls and women and because I'm sure as many of you are aware that the the picture the history and the knowledge that autism may present differently in females is a fairly recent understanding we can have a look at the female presentation itself and think about how that applies to the diagnostic criteria for autism the existing diagnostic criteria the the general thinking as far as I'm aware is that nobody really thinks that we need a brand new criteria for diagnosing women we just need to learn to apply the existing criteria in a slightly different way to ask the right questions to look at their and behaviors perhaps in a slightly different light when it comes to girls to broaden our understanding of how girls might present and it might be different than than a standard male or more traditional profile we're also having a look at some of the challenges for for girls and women academically teenage years and social and have a little limits and some strategies so for for support so what I'm going to talk about today is very much trends we're not talking about anything definitive there's no absolutes here the presentation is varied across all individuals on the autistic spectrum and the impacts of that is also varied for all individuals it's also worth mentioning that this is not binary because sometimes I give these presentations and people say hey but I've got a son who presents autism just like that or I've got a door who presents autism in a much more traditional way so I'm not definitively saying that all girls were all boys to experience autism in any particular way this is a generalization of a certain type of features and a different kind of kind of profile and we know that it's not just girls of women who are misdiagnosed or all missed for diagnosis but the focus of this session is more more on on females we also know the gender is not binary and that for a lot of people male and female identities don't encompass their experience so I'm going to use the the female terminology and but with the understanding that actually we're talking about a whole bunch of people some of whom don't fit within any kind of traditional male-female identity or roles so um I moved a little bit about myself as we go on I was diagnosed as autistic a few years ago at the age of 43 by the time I was diagnosed I had a master's degree in autism six books published about autism I've delivered well over a thousand training presentations I was a manager of bernal autism some entry we're a little tingling sound project it was seven Annie is able to have a diagnosed autistic partner and a son and other other family members increasingly all know sees oh my back um you you cut out there for a little bit and he'll open yes I can hear you now we lost you for a bit I we I heard by the time you were diagnosed singer you said by the time you were diagnosed you had a mouth okay you're disappearing as well now I don't know one of us is maybe I've got some good net good internet signal or I don't know why that's doing that yes my back sure yes your back okay I'll keep trying um but someone's diagnosed I had a master's degree in and published books and as you can see delivered lots of training sessions and I was a manager of an autism a mentoring project for seven years and had family members diagnose my son my partner also have have diagnoses which sounds a bit crazy that I could be in the field for that length time and not realize that this applied to me and I guess that just really only goes to show how recent the understanding of women are and it took so long purely because of that that all of the people that I were comparing myself to all of the instruction that I read through my training around all autism all presented to me a profile of a person that I didn't really fit I was aware that I understood it I was a people would come up to me and conferences and say you must be autistic there's no way you can talk about autism and not be autistic I talk about it in the way that you do and not be autistic and I just thought whoa no I don't really fit increasingly I started to meet more and more women through my work who had diagnosis and increasingly I started to see that those women were very very similar to me we had very similar life histories and and the things that were going to talk about today will also I hope show how how we this expectation of a certain way of being is not necessarily applying and as we will learn one of my things that I did was to apply my logical brain to the lifelong study of people rather than objects and and the studying of objects especially interests around objects is is very much something that we traditionally associate with object with autism but what happens if you study people you get to be very convincing you get to be very expert in and how to socialize and how to how to get get on with people there my life was I can't move the slides here we go and as a child this is me with my friend Amanda and Amanda is now the head of an autism unit in a school so Amanda obviously picked her friends well from and from an early age and and looked after me kindly brownies I was considered to be a gifted child who had a very high IQ and apparently I spoke full sentences at nine months old there were various descriptors made of me shine Urata kin a world of her own Sara snail Big Bazaar I was so we is dawdling and and and daydreaming I was very much a tomboy I liked making all and I liked all the sewing collection I would organize all of them into into small small boxes I was considered to be very clever but lazy I didn't really understand what the purpose of this learning was I was never alone I always had friends they tended to be one-to-one quite intense friendships and they were often people who were much more socially able than me so I kind of trotted around quite passively our oft after each of these individuals and then moved into teenagers and as we will learn from research and anecdotal evidence lay in a few minutes that the teens are really hard for the girls it's the point where the social relationships change where they become much more nuanced they become much more complicated and the teenage girls struggle enormously to keep up with their peers and for me I was a very naive person despite being clever I didn't have much of a social understanding and I think this is a very key parts to what we often call the the spiky or uneven profile in autism is that often this can be somebody who's quite brilliant in certain areas but actually in other areas where more social or abstract thinking is required we end up with somebody who can be unbelievably incapable or awkward or vulnerable or naive I very much wanted to fit in but all of that was a was a was a non intuitive conscious F but to try and to work out how to do all of that and the result of which has been a lifelong added quite a large degree as a teenager with with alcohol and then unsurprisingly I ended up pregnant by 18 and this picture here is with me with my my baby daughter who's Nell 29 lots of relationships lots of couple of failed marriages many many jobs just a real mishmash of of how what was on somebody who had a such a good educational profile and it was an expectation that I would be successful that life would be fairly easy that I would achieve very highly and none of those things really happened because I just didn't really have the people skills the flexibility the anxiety management to to live the kind of life that my my intellectual profile perhaps suggested was would be possible and so the diagnosis I mean some people say well why bother being diagnosed in your forties you've got that far what's what's the point and I think the point and this is certainly an experience shared by most people that I have met who have had later diagnosis is that suddenly it all makes sense it's not an excuse to it doesn't get you out of things but it just all makes sense that you can fit all the pieces in and understand that all too and explains it all it explains why a shopping trip for me is it's exhausting after 30 minutes why I'm hot in the air-conditioning I am uncomfortable trying to put my clothes on I just want to get away and that other people find that fun they find it enjoyable that everyday activities are exhausting if I go to work during the day then that's my day finished and I have no hobbies I don't see any friends I do nothing in the evenings the day of work exhausts the capacity that I have it explains the multiple relationships and the multiple social difficulties that I've had I don't really maintain friends very well it just doesn't really occur to me to contact people and often I find that I don't I'm not able to make friends well despite my best in efforts I just don't seem to stick with people I can't explain why that is I hope I'm not rude or odd or or particularly inappropriate but for some reason it's a truth that I just wouldn't kind of get the call and I wouldn't end up on that person so typical friend list and again this is something that seems to happen to a lot of a lot of people and it also explains that I just don't really I have this enormous ly logical brain and I often seem to reach conclusions but more quickly sometimes months ahead of other people and I'm usually correct purely because I just used logic and I and I just see things in a very particular way and so I often end up being right about things and frustratingly because nobody listens and they have to kind of find their own way and end up there whereas I figure that we could have saved a whole bunch of time if we just believed me in the first place but often people don't seem to feel that way and and also I don't talk about handbags I don't do handbags I don't I don't have this sort of more female kind of fripperies or just just not one not my thing I have a rucksack because it carries my things in it in a practical kind of a way I don't wear makeup I don't really do fashion so in in lots of ways I think as a woman there are there are certain things that then I just can't participate in because I have no interest I have nothing to say and I just don't know how to give people what they need in those sorts of things until the diagnosis kind of means that I wasn't wrong i I was I was just just different the other impact of all of this for me has been a whole bunch of not only sort of mental health kind of things mainly around anxiety and but also a lot of physical ailments I have tinnitus I get vertigo I have headaches I have migraines sensory issues around light most chemicals air fresheners air-conditioning those sorts of things and quite a lot of foods I'm just a bit insensitive to so I think I just always spent my life and one of the things when I wrote a book about what about women and girls and autism and one of the things that came up was was how the quite often the women had been accused of being hypochondriacs that we were perhaps feeling everything that was going on in our bodies perhaps more stressed perhaps more more overwhelmed a lot of the time and consistently were having health problems just just niggles and difficulties with with our with our health and that came up quite quite a lot so for me the autism isn't just a standalone cognitive thing it affects my whole physical and mental well-being and ability to function in the world in the same way that everybody else may just take take for granted so now I leave this very autistic life this is me and my partner picture was taken about 13 years ago he looks like he's about 17 he's actually 47 and so there is a thing about youthfulness coming with Asperger's so maybe maybe that sir that's something that he's been blessed with I'm not sure that I have the M the life that we I have now and and the the framework that the diagnosis Gibbs is an is an ability to create a life which supports the strengths minimizes the effects on health and well-being and minimizes on limitations my partner is also autistic and that's enormous ly helpful and to have somebody who has some understanding and some acceptance or offer of a world that is not necessarily particularly typical I live in a very rural very low in arousal environment and I don't see anyone apart from my partner for for many days on end there's no traffic there's no buildings there's nothing unnatural that obsessed me on on a sensory level I also run my own business I'm an independent trainer consultant and author in autism and I manage my own schedule I also don't have to listen to the authority of other people which was a big problem for me and hence why I had over 30 jobs and that I don't necessarily see things in the same way that other people do and I'm still working on trying to accept myself and trying to be myself and to try and stop trying to be what everybody else wants me to be and to have some kind of sense of self-identity and an acceptance and that's a work in progress and I think for a late diagnosis and having spent over 40 years not knowing why you didn't fit and and yet desperately trying to I suspect that will always not necessarily basically easy for me for new to do I think younger people perhaps might have a better chance of achieving that um and I think just understanding Who I am and what I need allows me to accept a woman certain mice so I I'm going to do things in certain ways I like to eat the same meal over and over and over again that's okay and I think which come over that's being like so in the past or you actually even even currently gender has rarely been considered in autism research typically in autism studies there have been a group of autistic people usually children and a group of non-autistic people and it may well be that those two groups were compared nobody ever thought about separating those groups to consider whether male or female autistic children or non-autistic children were behaving or responding in particularly different ways so the autism diagnosis always kind of removed any any potential gender differences that often people consider to exist in the general population so what we end up with is that there are very few gender separated studies there are very few women within those sample groups because Camryn aspergers original work was was the original what research papers were code out on male children as the diagnostic criteria have evolved from that initial research they have changed but because only male children were being diagnosed for the most part they've continued to change around a kind of more traditional male if you like autistic profile so the sample size is in any gender research don't get any bigger because there aren't very many women - or girls - to take part in those studies because because they've not been diagnosed and so we end up with this kind of self-fulfilling prophecy with clinicians learning that autism is mainly male because all the research papers are focusing on sample groups that are that are made up mostly of a voice and if females don't kind of fit that profile then the chances are they're just not going to be diagnosed plus the clinicians aren't looking for autism in girls they're looking for something else don't necessarily assume that a girl presented to them with with a certain features would be autistic because their understanding is that the girls don't necessarily have have autism so we end up with this round a round circle of a few females being diagnosed and therefore the diagnosed that the diagnosis and the proportion of male to female remaining relatively high I think at the moment it's considered to be about four to one generally but people are now thinking well maybe more like two to one that there are many many more girls out oh can you hear me John I can hear you you've come out in and out briefly but it's back now okay is that okay all right I'm okay yes okay thank you thank you sorry so the females specific diagnostic criteria are not considered to be required the recommendation is the clinicians are trained better and with girls often the mental-health diagnosis is often given first before and an autism diagnosis things like social anxiety disorder things like OCD are often more readily given to girls and the other last week I gave a conference presentation to a roomful of hospital clinicians and psychiatrists and and such and presented a bit about myself - and a bit about the female profile and one of the psychiatrist said that if I had turned up in his clinic he would have given me a diagnosis of borderline personality disorder and that which was very honest of him and that he said that he just didn't have the awareness that somebody like me could could present in this way and and and legitimately have an autism diagnosis and I come across this a lot I've come across a lot of women who have a whole string of mental health diagnoses and myself included and general anxiety disorder and agri phobia those sorts of things things that I've been diagnosed with in the past when actually the core of it all could be could be autism so we're saying that girls are often diagnosed a bit later than boys on on average and in England we have a tool called the a dose I don't know if you have that over in the states but it's considered not to be appropriate as a sole diagnostic tool for girls and it's just to course it doesn't pick up enough and it doesn't make any concession for masking it assumes that all of your behaviors you will display during the assessment appointment and so if you don't because you've learnt to hide them or you don't want to look different for whatever reason and you won't score as being on the autistic profile and so experts including dr. George gold who was a long-term colleague of dr. Lorna wing and suggests that the a dose is not appropriate for for being the only tool for diagnosis professor Tony at word is developing a screening test for girls not a diagnostic criteria but certainly a list of questions and which are relate more closely to the things that we're going to be talking about today if you're taking someone female to diagnosis you must compile as much evidence as you possibly can about how she meets the criteria and you can't just necessarily go along and expect that the clinician will be able to ask the right questions or suss it out particularly if she's particularly invisible particularly if she has no learning disability or no intellectual impairment if she's a kind of mainstream child or adult it may be very invisible and it's important that we make sure that that you go fully armed to demonstrate all of the criteria be being met and and that information is easily findable on the internet you just kind of Asperger's criteria or diagnostic criteria autism criteria you'll you'll find what you need with many examples and the caution for diagnosis and diagnosis overall is extremely beneficial to most people that the caution is just too so it doesn't limit on all leads to over overprotection the research context as I said it could be we've considered that it's around about the 2.2 two to one ratio but some people suggest that it could be equal we may have as many males as females on the autistic spectrum her girls apparently look less autistic these are all features that were picked up in different research papers that I looked at and they're a very very small number of research papers which differentiate autism by gender or which study women girls solely and literally a handful when I was writing my book it was enormous ly hard to find anything new all of the papers just end up referring to each other and again going round and round in circles and one study looked at when girls were diagnosed and it was considered that girls were diagnosed around the age of eight and boys around the age of five as as an average so it was taking longer to get that diagnosis there are some suggestions that girls are in some way protected neurologically and in order to get autism if you are female then then more has to happen to the structure of your brain in order for that for that to be the case but this is very new stuff a huge amount more and understanding some people feel that male and female autism may be actually completely different conditions totally totally separate from from each other for girls that didn't have speech delays or any intellectual disability and early and precocious speech was very common so myself just people beginning to speak at a very very young age and having very extensive vocabularies being great deal out of it at a very young age which can often fool us into thinking that the social understanding is there and the reciprocal communication is there but actually that might not necessarily be the case we're often fooled by speech ability in autistic people which we assume to equate to understanding which it doesn't necessarily we know that both males and females on the autistic spectrum are potentially more androgynous again some studies were done looking at testosterone and androgen profiles and and finding that that it may well be that these individuals just didn't really fit into both gender identity sexuality and all of those sorts of things in in the same way that we might expect and much higher numbers of autistic individuals are considered to be and non non-binary gendered and also their sexuality no no on a dresser actual oh um so by the asexual bisexual polyamorous transsexual so a whole whole kind of different realm of transitive dressed sand and that the girls have more social difficulties than the boys and it may well be that part of that is because the social profile of female relationships oh okay I'm sorry if I could just interrupt for a moment John can you hear me or am i gon complete I can hear you at the moment but you've you've come in and out over the last couple slides I'm wondering if you would mind dialing in for it and that way we can just keep a consistent sound so you wouldn't have you wouldn't have to cancel out of anything all you would do is and it is need to numb yes so if you go to your control box there in words as mic and speakers there's also a telephone option do you see that right yep we'll just click on hello hello hello can you hear me hello Joanne hello so try try using that and my oh hi hello hi oh my you go you're you're falling in I can call yeah Oh excellent I hear you very well okay perfect and it there's no there's no there's no distance between us sounds like you're right next to me excellent okay wonderful thank you sorry about that that's okay will you be able to chop the video or something to get rid of all of these bits and pieces or is it all going to be out there it's going to be out there but I'm going to make a note and and let our viewers know that there's a couple of points where the audio fades so that they realize it's not their screen okay fine so we heard so on this screen research context I heard you right where you were saying that males and females with autism or more androgynous and then it okay fine we'll begin from that point there then okay right thank you okay most famous luteum are considered to be more androgynous or we traditionally talked about males being more perhaps more feminine and we've met perhaps talked about girls being more tomboyish so that those are some of the terms that people use scientifically people are starting to think actually maybe neither of those things are true that actually maybe both and both genders are more in the middle and almost were without gender and certainly there's been some some early research and a lot of anecdotal work from individuals who consider themselves to be and in terms of their sexuality in terms of their gender identity other than heterosexual other than male or female so we are seeing early research that suggests that larger numbers of non heterosexual people in the autistic population and also more people who are gay bisexual asexual pansexual transsexual or a whole bunch of interesting stuff around around gender and sexuality and various reasons for that potentially something around feeling socially connected picking up those social cues and put them there for maybe modeling a certain gender cues it may well be if you don't have a great deal of peers or you see the world differently than your peers then you may not pick up on those cues and essentially end up being much more of a blank slate in terms of your gender certainly people I've spoken to some of them say oh I don't feel male or female I just feel like me and not really having a sense of that in terms of a social construct it's considered that girls are less rigid and perhaps have less deep interests than the boys and but the boys have the girl sorry the girls have more social difficulties which seems contradictory given dauphin vanilla chatterboxes and often they they like to join in but the truth is that when female relationships become much more complex in teenagers that the girls really struggle to catch up male relationships don't change quite the same degree in teenage years and so therefore it's it's easier for the for the boys to carry on whereas the girls really really start to struggle because female teenage relationships become much more nuanced and complicated as a general kind of overview we've often kind of thought about autism as being very much the loner whereas what we're seeing is that some individuals with autism and perhaps more more girls are actually very clingy and they want somebody around them they're very very close to their mother or their main carer they're afraid to be alone and so rather than choosing solitude they actually choose to be with someone else who can help them and so just to feel feel safer some all kind of brief bits of research there's been some implications around anorexia being linked to the autistic spectrum a sharing of weak central coherence rigidity perfectionism low self-esteem and low empathy some self-harm research and thoughts of the an holiday Willie talks about her experiences of self-harm for some people it may well be a means of expressing emotions which they find difficult in a physical way a concrete way so feeling a physical pain is easier to deal with than feeling an emotional pain or an emotional discomfort another piece which is very very relevant to certainly to mind life and another's similar to me if this study that suggests that women on the autistic spectrum have more life events so rather than leading rather risk-averse and small lives which are our traditional thoughts about autism may well may well be what we what we end up with there are people trying to be proactive trying to make friends trying to do jobs but not necessarily having the abstract imagination to make effective decisions and therefore those decisions often go wrong and the person ends up in in crisis on multiple occasions multiple relationships multiple jobs multiple house moves pregnancies abortions perhaps it's just just lots and lots of things they doesn't look like autism we think of autism as being somebody kind of quiet and self-contained but actually this is somebody who is much more out there and trying to kind of kind of do stuff but with that we end up with this rather anxious and worrying profile wanting to get it right but being aware that perhaps and she can't because she doesn't have the the means or the understanding to be able to do so piece of work by Professor Simon baron-cohen looked at both autistic women and the mothers of children with autism and showed a whole bunch of essentially testosterone androgen profile health related concerns around Beauty them some sexuality related issues menstrual difficulties polycystic ovaries all of all of those those sorts of things are listed and so there's definitely something on a hormonal level something on a neurological level that is different about about these this group of women all delightful things as well as having autism you also get to have all of these lovely health things as well not not not that great so let's have a look at the criteria so these are subheadings that we're going to see on the next and next few slides are all subheadings that are within the diagnostic criteria of autism essentially and I'm just going to have a say a few words about how the how the girls don't necessarily obviously fit those criteria but actually if we look a little deeper we find we find that they do so in terms of social interaction we know that a lot of the girls are very good at copying and mimicking in order to hide themselves their people watches they're often a little of seemed little little girls at 5 or 6 years of age they very serious face not too much social smiling they sit on the edge of things and they watch and they're taking it all in and they're learning the rules and they're learning how to be how to have to be social how to how to do all of all of those things and they talk a lot potentially and certainly a lot of the girls are spoken to a lot of women are spoken to said that their speech was incredibly important they were very much communicated so neither of these things necessarily fit with our general understanding of what autism looks like here we have a very proactive and copier who is utilizing the skills that she's learning through the observation in order to some degree to to fit in but it's quite surface-level so it often comes that there's not much depth that she's often confused about what people say and what we can do particularly if it's not clear if it's not literal all of the things that we would expect from an autistic person and yet her outward performance and profile it doesn't necessarily fit those expectations in terms of peer relationships quite often she's either in charge of everything or she's passively being bossed about by somebody much more nurturing and some someone much more sociable the key point is that she's often not alone and again being alone is something that Flags up people's concerns about typically an autistic boy whereas the girls seem to seem to find little little groups that they can they can hang on to all the one exclusive friend so anybody observing that girl in the playground wouldn't see that there was any any kind of problem there at all the friend can be a special interest that can be a real then what address like the friend speaks like the friend be with the friend all the time and if the friend goes off and makes another friend elsewhere this can be actively devastating because she just doesn't get it she doesn't understand why would you want someone else when you have me another feature and certainly this was one of my strategies was to become a clown because being funny being the center of attention in a positive way by making people laugh is a way to gain social status and so she might be quirky she may dress in an unusual way she's a quite a character this girl though again not necessarily the kind of profile that we would expect that traditionally learn from from an autistic person in terms of interest as a very general role these are often tend to be more people based or certainly people subject based so things like history things like genealogy things like self help things like psychology animals celebrities all of those thoughts of things are that perhaps a little more typical for for for girls and women to to be an interest in not your trains and your dinosaurs and your facts and figures they may be factored figured that they are about people or they're about the study of people I've met a number of women who have become counselors and therapists and psychologists because they've spent the whole of their lives studying people they can't necessarily relate to their clients on an intuitive emotional level but they're very good at understanding what's going on and being able to work with people on a much more cognitive logical level so it's been a life's work for these girls and these women to work all of this stuff out this is someone that traditionally we used to talk about boys with Asperger's as being little professors because they knew everything they'd read encyclopedias and they just quote all these facts and the girls are often called little psychology because if they're studying because of this is watching of people some although are completely opposite some are actually disinterested new people they don't notice them they they they have very very little little interest in in what people are doing and are really baffled to understand why somebody might be doing what they what they want what they are doing the topics appear normal and this again is a fool tuturro to a diagnostician times in not painting the autism is that all of these things animals cats TV celebrities are all fairly normal pursuits and interests for a girl but it's the intensity it's the depth of knowledge that she has it's that the talking about it for hours and hours on end it's the taking up a moment of their time that's what differentiates it just from a hobby into something which which might start to fit some of those autistic criteria in terms of more fixed behaviors around routines often there's different gender expectations that it may well be that we think that the girls are so some of these changing girls are considered to be positive things like being sensitive a perfection it being particular being helpful being sensible often this is quite a mature little person as a child and so is often liked by teachers because they're because they're not silly they don't mess around in the same way that others other children light of the same age they collect things they're not be very neat very tidy like their rooms organized and their spacing in school organized in a very particular way we don't necessarily pick up that this might be more than just a positive trait it might actually be a coping strategy that actually she can't function unless these things are in place and we might not necessarily see those those sorts of things as necessarily being at being a problem because because they're they're just an extension of a nice a nice quiet sensible connect on a little girl typically is considered that boys when faced with something that they can't cope with will become externally distressed or aggressive in some way and it's considered the girl in the general population as well tend to internalize those those sorts of things they're more likely to self-harm than more like to become anxious or depressed rather than be out with an aggressive in autism what this means is that we we often end up with a shutdown rather than a meltdown in some of the girls so it's not loud it's not bigoted it's not anything that Flags anyone's attention to which this is her just closing herself right down and being silent not causing any trouble not alerting anybody to the fact that she's having a problem maybe she'll cry but it will be quiet the idea of admitting that you can't cope for some of these girls is devastating its failure and because you ought to be able to cope the perfectionist they need to get things things right so it may well be that behavior at school and behavior at home is very different that she's holding it together beautifully at school and then she gets home and all hell breaks loose because she just can't internalize all of the stuff that's going on so it's important to recognize that these two halves of a person's life are connected that that in order to just because she's okay at school doesn't mean she's really okay if family and parents are saying look she's absolutely losing it at home and it's very distressed then it's called me to be doing something to even that out across the board a little bit more because the the coping is not it's not helpful and it's not safe and healthy over a longer longer period of time in terms of sense is again some of these things in a girl we consider to be normal if she strokes your hair she likes to touch her arm or she feels the fabric of your dress for a girl that would be okay for a boy we might think that was a little bit weird so again we we write off these behaviors because we don't consider them to be picky unusual but it may well be again it's much more of a sensory need I met a woman the other day who was in her forties and we talked about those three behaviors and she pulled from her pocket a long piece of very old gray knotted and tied and chewed and frayed ribbon and she said this is what I have with me all of the time and she rubbed in she rubbed it on her face and she rubbed it in between her fingers but you would never know because you can't see it it's in her pocket I would never have known and unless she showed it to me but the way that she talked about it it was a very important thing for her to have even even at the age of 40 with children and a career soft toys are also considered to be normal in in a girl's play scenarios but what we might end up with here are large numbers of of toys identical toys maybe they're Teddy's maybe they're cat maybe they're My Little Ponies they might be lined up they might be organized they're not necessarily for playing in an imaginative way so again if we ask the question do you have stuffed toys and the answer is yes that sounds fine if we ask the question how many do you have and how do you tell me about how you play with them then we might start to find out that there might be something different going on for the bills with autism and they will explain to you the processes and the characterization both of these toys which might come across as different so it's not the subject intensity that makes the difference in all of these these things and this is why the girls are often missed in terms of imagination traditionally autistic people were not considered to be particularly imaginative pretend play wasn't necessarily it's a factor of of diagnosis not engaging in pretend play from my experience and also anecdotally and elsewhere what we see in the girls and the women is sometimes there was an enormous fantasy world there may be imaginary friends there may be a whole bunch of characters I met a woman who had over a hundred characters in the world that she inhabited in her head she would go to and engage with it's a better world their friends that are reliable they are friends that are that are safer friends that are not confusing she wants to engage with something but if the real world doesn't provide it then it may well be that that she creates her own world to escape from from the real world which is painful and difficult and despite your best efforts she's still quite quite kind of kind of get get right I've met girls who want to be a cat and one that wants to the believes that she is a wolf and crawls around on the floor will only be communicated with in those ways in a tendency possibly to think that there's some kind of delusion or psychosis or serious mental illness but for some of these girls that's just not the case it's just that it's just the place to be which is better and safer the girls who wanted to be a cat she was about 17 and she said well if I was a cat people would look after me for the whole of my life if I'm a human they don't they expect me to the past and myself she found the adult world very terrifying very scary and she dressed in very young clothes she was a very tiny person she had a very high-pitched much younger voice than her age easily could have passed for about 12 and actually that suited her to take on that persona of being helpless because it was too much for her to manage she would wear cat ears she would wear a tail and in a sense it kind of felt as though that was very much something that she hoped that if she looked like a cat then perhaps people would retreat her Quanah and careful in that way big activity choices for the girls reading was huge in everything although all the women I've met reading absolutely enormous particularly reading fiction which again is not associated with also young people talk about fifty people not not liking fiction but the girls often love it they love to read about people relationships perhaps they learn from those fiction books how to be how to behave all of that sort of stuff enormously valuable for them to pick up on those things from from books they're almost using them like instruction manuals for life Lego construction toys were very very important coloring drawing looking at bugs being out in nature climbing trees very much an outdoorsy kind of a person for a long for a lot of the girls they dislike the environment they like they like the world and often these were solitary pursuit that they were things that they could do alone and that they they very much enjoyed being doing doing alone the challenges for girls are that she doesn't fit anywhere she doesn't sit with the boys particularly she doesn't fit with the with the other girls socially she's trying to mass she's trying to fit in she wants to as a general rule in terms of gender expectations the gender expectations are that you're socially driven that you're socially intuitive that you're intuitively empathic and that your gender identity is very much of a female one whatever that means within your your culture and she doesn't necessarily abide by those rules she didn't get it she's logically driven she's not necessarily socially intuitive or intuitively and empathic and doesn't necessarily feel any need to fit to any kind of gender and defined boundaries or rules she has mental health statistically across the autistic spectrum numbers are looking at around forty to fifty percent of all individuals across the autistic spectrum having a significant clinical level mental health diagnosis and a recent study which was by Professor Simon baron-cohen suicidal ideation in autistic adults and the highest number of individuals were autistic females who experienced suicidal ideation and suicide attempts and so these are a very very vulnerable group despite being appearing outwardly able out really sociable outwardly capable the truth is that often you're taking on far too much this perfectionism this I can do anything I have to say yes to everything because if I say no it means I can't cope and that that doesn't mean that I'm perfect so I just have to say yes but the saying yes might be the thing that you can't do that aren't within your capability and so therefore the the mental health element to is that increased exacerbated educationally being clever is not enough and you need social skill to get through life it doesn't matter how many distinctions or age you get in your your academic world if you can't apply that to get a job to be independent travel on a bus to feed yourself to look after yourself which are all much more flexible Gill much more about shifting attention much more about recognizing priorities much more about building social relationship then you will end up just being a very well-qualified unemployed person perhaps someone still is that their family or who lives a very small life it is important that we don't equate academic intelligence with social intelligence that there are very different different thing I certainly delivered a load of systems the worker to teaching staff and the majority of whom are in female and I think and certainly this has kind of come from both sides both from the teaching staff being very honest about the way that they feel about some of the girls that they're teaching and but also from the individuals themselves about realizing that they were being treated differently by female staff and that there's something about it being a female female relationship but the autistic girl wasn't necessarily kind of meeting the needs of the teacher the teachers are often quite social people they're quite empathic they're quite nurturing bitly and though they enjoy that the social interaction and sometimes this girl she's a bit too serious she doesn't kind of play the social game she doesn't flatter the teacher she doesn't kind of behave in the same kind of way and some of the women said that they were they were told by their teachers that you don't have to choose to be different and so they were doing it on purpose it just wasn't understood that they this is who they were or this is how they were they were seem to be deliberately unpleasant or deliberately difficult and whereas from the girls perspective and that absolutely wasn't wasn't the case the vocabulary might be excellent it doesn't mean that you can understand what coming back your way being able to speak and construct sentences using your own words your own language your own understanding is very different than anticipating a question or reading through an exam paper or all question where the words might be quite rhetorical or quite hypothetical about situations or being asked to do something which requires those thoughts of skill it may well be that this girl can't show her potential teach you can't let people know what she's capable of because she can't navigate her way through other people's language and to provide the answers to the questions that that she's being asked because she can't understand the question she may well have the answer but she can't understand the question she's not going to be able to give it all team tasks at school have a social element you've got to negotiate you've got to work out and who's going to do what you've got to compromise on and on what's to be done and are you good at it or oh you know oh it's okay don't worry about me you do it if there's a whole bunch of game playing around social stuff in team tasks and this is not necessarily going to be going to be easy for her she's also a perfectionist which means that second best is not good enough and she may well spend far far too long on certain pieces of work in order to make it perfect way beyond any requirement or necessity and therefore exhaust herself or cause herself all thoughts of untold issues from her own very very high standard that she alone can't necessarily meet thinking about friends that she might have as parents carers professionals we might need to just keep an eye on some of these friends particularly as we're moving in towards teenage years and does the friend have a lot of control does the friend have agendas is there manipulation going on is their exploitation going on the autistic girl tends to be incredibly open hearted and very straightforward she doesn't have agendas she's not trying to get anywhere or do anything she's just being and other people can can very easily um make her believe things she tend to be quite trusting quite often but somebody says something she would assume it to be true somebody says they run out of bus fare and they need some money she will give them the money she won't assume that maybe that person is lying in order to get the money or spent their money or whatever so it's important that just because she has a friend or friends we couldn't can't necessarily assume that they do good relationships we need to kind of be careful particularly when we're moving into a sexual relationship and those thoughts of things that there's a real vulnerability and a danger there for some of these girls who are um pretty pretty vulnerable um and again nothing to do with their intelligence it might be very very bright but very vulnerable other girls might not be their natural peers but not assume that the girl wants female friends she may be much more comfortable playing with boys they're more socially they're less socially concerned and more interested in talking about stuff things that you do playing games being on the Internet not necessarily just talking about are you my friend how do I look those sorts of things which traditionally may well be too complicated and of no interest to artistic girl at all she may be late to socially adept and quite often it seems to be the case that everybody else is moving on towards perhaps seeing relationships in a more sexual context whereas she doesn't she still wants to play pokemon she still wants to play the games and other people have will start relating to her differently she might be completely oblivious to that she may end up in in situations which she doesn't mean to be in ended up going to sleep over boys houses when she's 15 or 16 not realizing that there might be an agenda there she's just being herself and just doing the things that she loves and maybe quite happy to do that much much later than other people maybe not interested in relationships until her until a later later age in terms of the education environment we need to perhaps think about lighting where we where we put her noise brakes at lunch times break times are really tough they are they are very difficult times for the girl to be to be in school the classroom might be okay it's early structures break time it's not rest by it's more work it's harder work Who am I going to sit with who's talking to me what's going on coping with the lunchroom it might be very noisy very very echoey her own high standards which I kind of mentioned before about this for perfectionism and we know the mental health picture is certainly there and just being exhausted and an understanding that when she comes home she's probably done that there's no room for more socializing more clubs it's just sit at home sit on the computer read just be in a safe quiet environment that doesn't overwhelm your your very limited capacity which has been completely and utterly and overtaken by by your days in school the teenage is that the girls that I and I talked to from off of my book described them as the worst years of my life peering in from the outside tried to fit in and failed some girls are brilliant they study people they study fashion they do the whole makeup hair and they just become absolutely perfect at it and it becomes a special interest and it's amazing a lot of them just don't they just don't get it at all it's uncomfortable they don't know what to choose they don't know what to wear they don't know what they're doing they don't know what the point is and so quite often we'll just end up in jeans in a hoodie and trainers not not really worrying about all of this kind of thing which makes it difficult to to involve yourself other girls unless you find your your peer group who are who are kinda similar also puberty your body's changing and there's nothing you can do about it and you grow breasts you have hair you have periods it may well be that these are all things that are very difficult you might not have a peer groups talk about these things with you might not have any information about this kind of thing you just wouldn't have picked it up along along the way so it's not unusual for an autistic girl to struggle with the concept of having to wear a bra and because it's uncomfortable on a sensory level she doesn't really understand why she needs to she wouldn't perhaps necessarily realize that maybe people look at you differently once you've developed breasts and you're not wearing a bra does that mean really changes the way that people are she won't necessarily pick up on those sorts of things things like wearing deodorant things like showering frequently things like changing your family protection not necessarily understanding the consequences of all of those things that if you don't smell too good and actually people start to talk about you in not a very nice way and that you can prevent all of those things this might need to be taught in a much more explicit way than it is with most teenage girls it really might be a proper fit down lesson which is exactly what you need to do and when she may not just pick this stuff up naturally in the same way that perhaps other other people might moving on into sort of adult relationship for teenage and adult relationship we mentioned already about gender identity and sexuality there may be some confusion and there may be some non-binary kind of stuff androgynous presentation and it has that how does that affect people the understanding of you and whether they want to be in a relationship with you and certainly perhaps larger numbers of asexual people who have absolutely no interest in any kind of internet or physical relationship at all that's fine for them doesn't mean anything wrong with them it doesn't mean they need therapy but actually that's just something that they are that they don't have those sensations will be learning any benefit in having relationships with risk with people very much a no game playing kind of person might be quite blunt might be quite straight forward this might put you in difficult situations if you walk up to people and say hey would you like to have sex with me in a very blunt fashion I certainly know women who've done such things culturally that that might not be necessarily acceptable and therefore again you may get a reputation just for mistaking your very clear clear way for a lot of the girls there's a lot of personas building up there's a lot of being somebody else in a social situation putting on a face putting on the mask being something that you need to be in order to be accepted at some level but it's exhausting and you can't keep it up if you've done it all day you need to go home shut the door and turn them off take the mask off and your real self gets lost somewhere in the picture so that you don't actually know who's underneath all of that you are just a death of adjusting personas for different situations sensory issues can affect people in terms of relationship one of the other books I wrote was it was around sexual relationships and around 50% of iced-over couples or one partner had autism didn't have any intimate sexual relationship whatsoever so it's not particularly unusual for that being the case in autism relationship there could be all sorts of things that we touched male noise some of those are good there are there are certainly people having very fulfilling sexual relationships within fetish communities within meeting people online for no strings physical only relationships that are very very safe and very fulfilling for them and most of those people are on the autistic spectrum and they're not autistic sorry but it seems to be that sometimes there's quite a high proportion of illicit people that end up in those communities because that's what they need on a sensory level they need the pressure or the smell or the tactile sensory stuff so it's not always negative that there may well be a positive side to all of that for a very very small number of women with autism who commit sexual offences and typically these the offending behavior in women with with autism appears to fit around people it's where they've been wronged in some way so arson features quite highly stalking not picking up signals not picking up lack of signals revenge behavior and perhaps sort of generally kind of inappropriate social behaviors or overstepping sorts of social boundaries all of these kind of offenses they kind of fit within the profile of autism it's somebody wants something doesn't understand why they've not got it and therefore takes out their anger and frustration on the subject on the object of their of their affection but certainly vulnerable to predators this person on the other side and most of the women that I spoke to for one of the books I wrote had had certainly had predatory relationships as they'd later realized that were quite abusive and they really weren't very healthy but at the time that sometimes been quite grateful that anybody wanted to be with them because they've had this lifelong history of feeling feeling so different the adult women are still the little psychologist she's not entirely fluent at getting on with people still working at it it's still hard work every single day there's a big community of adult istic women on Twitter and on Facebook in group and on social media generally just a really positive community of people sharing their experiences and demonstrating that actually they're just as autistic as they ever were but they found ways around it they can laugh at it they can share it and that the diagnosis was being enormous li+ a very great sense one that I very much share is that it's important to find your tribe and the autistic women's try these other autistic women they've often not related to autistic men in the same way but finding other women has been enormous ly powerful that absolutely huge for them they still don't necessarily identify with with the standard neurotypical women still can't talk about handbags and super ease in fashion and those sorts of things might not identify with the kind of gender roles about how you walk how you move how you behave as a woman that that are intrinsic in a lot of people but often arms just aren't there for some autistic women often seen as not particularly approachable this is this is very much my experience that I'm seen as aloof scary standoffish unapproachable unfriendly and none of those things are true I can only assume I just don't make the right number of facial expressions or or something maybe I'm just observing maybe I'm just thinking trying to work out what to say how to how to get into the situation that that's a universal thing for many many women is is this idea that we are stuck-up or superior in some way and actually the women themselves just have no sense for feeling that way at all we actually feel scared and lost but how that presents itself externally appears to be something a bit more bit more negatively purposes we still can't quite meet a lot of the social expectations of what it means to be a woman don't necessarily rush over to pick up other people's babies we don't necessarily do a lot of interim chitchat and contact with with friends we're not texting all day we're not sending messages all day where we don't do a lot of that sort of thing a lot of people and again this is very much Mike parents are not great at the maintenance not great of filling in the gaps in between contact with with friends and family just not doesn't doesn't occur that that contact might be necessary or required we're still blunt we're still kind of straightforward and society is less forgiving of that in a woman Dan it is in a man if a woman send the rather blunt and direct email she's labeled very different and does the same thing quite often society assumes that men are a little bit more blunt or they are not necessarily quite so intuitive there are expectations on on a woman that but actually that if that is the case parenting is difficult one of the one of the biggest groups of people being diagnosed now or autistic mothers women who have had kids and their children are being diagnosed with autism and now they're realizing that actually they may well have that as well I'm parenting is difficult for all of the reasons that that I'm sure you can imagine um the social elements meeting other parents having to have kids around fatigue anticipating danger safety having somebody reliant on you all of the time not being able to escape and have your solid you just the overwhelming responsibility of having this person and increasingly we're starting to get some narratives around around motherhood Alana grants has written a book about pregnancy she's had six children I think and she's written about autism and pregnancy she's achievement is it woman herself Liane Holliday Willie mentioned the relationship with her with her child and in her books and the mental health stuff is still there but they're hidden because she's still presenting capable and she's still she's still hanging in there and trying to try and keep keep it all together in terms of professional support what we need to be putting into place is making sure that if a diagnosis is necessary that the information is there we collect the information we put a big picture together of this person how does all of the criteria enormously important that we provide that information about allow an experienced clinician to miss something that shouldn't we might want to question actually the experience of the clinician in understanding girls particularly adult women if the the scenario because a lot of people just really have had very very little experience of diagnosing adult and moreso girls and one women we also might want to question the appropriateness of the diagnostic tool what kind of you get on google get on the forums ask people does this work is this good there's a lot of expert knowledge out there in parents in autistic adults to make sure that if the process is going to be done and it needs to be done well and it needs to be done accurately we might need to think about doing some training for the family again a lot of family members don't understand that the girl is her autism is the way the way that it is I met a teaching assistant the other day and she said that she was working with a family where a son had been who's quite a learning disabled and an autistic and had a diagnosis and that the girl was very clearly according to this teaching assistant and potentially autistic but because she was so different than the son she was verbal she was intellectually able and she was female that the family just could not accept that this was a possibility so that all of their their beliefs around ought it were very much wrapped up in the profile of their son and they were not able to broaden that to encompass the daughter who also may well need support so we've got to put this kind of knowledge out there another family I worked with they came to a training session I ran and afterwards one of them said all that all makes sense I thought if she was just her but actually now and then her being her fits into this diagnosis that she has and then there are many many people out there like her it's not just that she's worth watching unusual but actually it fit fit it all it all makes sense we need female specific knowledge we've gotta be careful that we don't and that very restricted route about what's male-female but that we broaden our understanding of how autism might look and specifically around sexual health we need to make sure that there are very explicit rules being taught we need mentors we need people to keep these girls safe they're proactive and that makes you dangerous because you might want the relationships you might want the acceptance but you won't necessarily have the skills to protect yourself and to spot people who aren't necessarily safe and good for you so we might need people as kind of backup to make sure that there's there to let you know don't do that that's a really bad idea this person is not trustworthy you kind of need a guide you need a navigator to get get you through one of the biggest things I think I always tell this to individuals and to families don't ever let her compare herself through a mirror typical girl she will compare herself unfavorably she will appear far less sociable far less flexible all of the things that perhaps a lot of girls really want to be particularly in teenage years to you if she is comparing herself to someone who's not like her at all I who doesn't have autism the chances are that she's going to feel pretty bad about herself we need to help her find her tribe where are the girls that are like where the club or all the boys that have been alike her where are the clubs where are the where are the games where the other geeky kids hanging out those are the people that she's going to be comfortable with or - women only support groups there's lots of books out there either written by autistic women or written about or autistic women you can see a list at the bottom of the slide here we mustn't assume anything that you know she might be bright logical clever whatever but actually there is likely to be some kind of social difficulties in she's one step away from from danger and chaos and once she becomes an independent woman because people aren't all kind of GG assumes them to be so we don't want to protect her and maybe that she has to make some mistakes but equally we want to try and skill her up so that those mistakes are painless as they possibly can be but we mustn't make any assumptions that she knows anything at all about about this kind of stuff so in generally kind of supporting her understanding her limitations we must accept that masking all day takes its toll we must have judged her against her female peers don't tell her you're not like so-and-so why aren't you more like so-and-so you need to go out and make more friends maybe she doesn't maybe she just needs a very small number of friends who are similar to her that that's what the adult female picture looks like autistic adult women don't tend to have billions of friends they have a small collect number and often those women are quite similar they may not be diagnosed but they're certainly a similar kind of a profile the sensory stuff is real if she's complaining if her health is bothering her it's not her being fussy it's not her being a hypochondriac it may well be that there's an impact on on her well-being from anxiety from tiredness from social tol home in her room are sanctuaries are very important places you might feel that she spends way too much time up there and want her to come back down and you might need to manage that with some kind of boundaries but certainly she needs to be allowed some space there being alone is the only time that you can take off the mask and just be yourself and that's incredibly important for mental health and real being well being people are often more accessible than they are enjoyable that's a terrible thing to say but unfortunately it's true loving someone doesn't mean that you can tolerate them for very long periods of time if you're going on vacation if you're going to be around together for a long time in a relationship in a family whatever setting that is where does she get breast bite can we can we allow her to stick those headphones on or be away for a period of time in - mission to allow her to get that risk fight it's not personal it doesn't mean people don't love you it just means they just can't cope because no matter how much they love you you are still a person and a person creates social demands which may be above what you can cope with being alone is not the same as lonely being alone is wonderful but you can also be alone and then sometimes be lonely too and we just have to work out what the social level that is right for her it is acceptable it's likely to be a lot less than it is for most other people and we need to take that into account and not not make any judgment on that interest of the way into relationships and interests engaging her social self chitchat fashion may not be of any interest at all find out what she love learn a bit about it and that may well be a way to build a better relationship with with this girl or all this woman we need to teach her to be herself in a world where often that disapproved of not quite tough to do that the building a strong sense of self allowing her to be good at what she's good at and letting her know that she's absolutely fine exactly as she is because that's the message that the world often doesn't give her it says eventually maybe you're not fine you need to improve or change in some way but the message that we give ought to be one that actually no you're not you're absolutely fine and it's finally just to kind of end on her on a more positive note I suppose that actually who this person is is she could be incredible she's not necessarily influenced by peers by gender by social work constraints she's often her own person she's strong opinionated determined capable she can do anything that she puts her mind to it and that's important for us to recognize that the benefits of autism are are in that single-mindedness are in the logic are in this straightforward way of cutting straight through to the core of something but if we can develop those skills in our young women and girls young women and adult women and then actually they can be enormously and reach the potential that they clearly have thank you very much for listening I'm going to stop there excellent Thank You Sara and we have a number of questions that came in and that I'd like to cover the first one is what are your thoughts on next research steps to ensure accurate diagnosis for girls I think we just need more diagnosis for girls and probably that the research may well be around how adequately clinicians are trained so what do people know ready what we are what's the level of understanding in this population and hopefully what that sort of research would would lead to would be some kind of programs where we are training a psychiatrist psychologists and diagnosticians to to be better at doing so research itself is interesting but for me research needs to lead to some kind of practical practical changes and it seems to me that the biggest hurdle at the moment is the majority is the number of clinicians that are just not recognized as autism in girls and that continues to perpetuate which I'm still finding credible that that message isn't quite out there that everywhere I go when I deliver talks I deliver training or whatever I am coming in contact with people who who've had girls turned away for diagnosis because people just don't understand that this is how it might prevent itself so that's what I would like to see what is the awareness in clinicians and how do we change that okay and another question we had is can you explain and tactile simulation or lack a tactile simulation to help or harm a person with autism um I think this the sensory if I'm understanding the question right the century' profile of an individual is it's very ended there individual and so for some people tactile stimulation would be welcomed and relaxes people should we know about temple temple grandin who has a squeezing machine who likes that feeling of pressure across the whole of her body but finds it difficult to get that from a human because the human is too variable and the machine is predictable I also know that there are people who cannot bear any kind of contact they were very baggy clothes they can't bear the feeling of absolutely anything on on their skin to some degree people can desensitize themselves to some of these sorts of things I think the days where we used to hold autistic children who hated being hugged and wrapped them up and wrapped them up and let them scream and scream and scream are mostly gone this kind of aversion therapy I think mostly we're quite accepting that some people like sensation and touch and some people don't in terms of whether it helps or hinders I guess it's really just working out from the individual what what their particular picture and profile is and whether there is where is enjoyment if there are certain things that the person loves I would advocate putting more of them into their life if they like sitting in the bar for hours on end because they enjoy the bubbles and the warmth and the feeling of water on their skin and we need to be scheduling that in that the last time shouldn't just be perfunctory for that person he actually should be a built-in pleasurable activity life is not just for managing the difficult bits it's also for building in the bits that makes your life more joyful and that's obviously the same for autistic people too no idea for answers the question but well if that ago thank you another question was so it during your conversation during your presentation you talked about your partner and one woman asks if you could elaborate upon that of your relationship with an autistic man and you intrinsically understand and adapt to one another and in more along that lines yeah I think you have has a plus and a minus side to it I there was some some research that was that was done that suggested that autistic people were 10 or 11 times more likely to have an autistic partner than they were to have a neurotypical partner so I think that we are naturally drawn to people who are similar to all my friends are on the autistic spectrum and some of them being diagnosed they are asked after me so I think that kind of makes sense that there's there's a similar communication style there's a similar emotional requirement and that I think being a typical perhaps makes you slightly more accepting of other people who are atypical even though they're 84 calais II might be quite different to yours so for example there are things that my partner can't tolerate at all which don't bother me but because there are things that I can't tolerate it's all I'm very happy and willing to accept his his particular peculiarities as being as valid as mine are I think there's something about being logical to logical people together is a very a very practical way to live your life we don't distress each other very much we don't confuse each other we don't play games there's nothing complicated socially going on neither of us like we like very similar activities we don't like being around lots of people so we tend to just be together most of the time we don't like solitude and we don't take that personally the downside is when things go wrong and that almost becomes the opposite but it becomes that that it's catastrophic ly terrible because if we disagree about something because we are by nature quite rigid because we are not great at seeing other people's perspectives and not great a compromise and generally both think that we're right most of the time that quite quickly a small disagreement will end the brink of our relationship will we better split up then in an astonishingly quick period of time because at that point we don't have anywhere else to go we we can't resolve the matter and we can't think up an alternative strategy that we may as well just separate and so luckily those things don't happen very often but when they do they're dreadful and then those times I'm really aware of how certainly for us and I can't speak for other people that our double autism has really screwed us over and that we can't get out of these dark places that we find ourselves in so yeah I think it's a it's a double-edged sword probably in some way okay thank you and and then the other question is and I am a 45 year old woman who believes I fit two female autism profile what are the benefits versus the harms of getting a diagnosis the benefits I'm assuming the individual is not requiring I mean I can't speak for the situation in the u.s. certainly in the UK fell in the UK if you are a non learning disabled independent adults person getting a diagnosis there are very very limited services available to you that it would it would be some counseling or something possibly and and if you wanted anything more specialist you would have to pay for it so in terms of getting anything useful from the diagnosis and there is not a great out there in terms of services for the main part the majority of people that I see who seek diagnosis it's self understanding its framework it is expert opinions some people have you to Dart self diagnose and don't need anybody else to kind of validate that for them but other people would like some kind of professional opinion to say yes actually you're right this is who you are and in pretty much 99% of all the people I've met and I'm cooking probably two or three hundred people I've met who've gone through this process it's a wonderful life-changing emotional experience to know who you are and be able to spend the rest of your life understanding why you do the things that you do and why the things happen to you in terms of negatives to getting a diagnosis sometimes family members are not particularly keen you might think it's a wonderful life-changing event and your family are very resistant that can be quite painful you might want to think about who you tell once you get the diagnosis there may be some implications around health insurance travel insurance driving licenses things like that I don't know how the situation is in the US you may want to talk to somebody at ane who can perhaps answer some of those those questions whether that's a clickable or not on the whole it's a wonderful thing to have done and most people find it though very much there excellent and actually there is one other question and this is about how do you do you have any tips on explaining traits and issues to neurotypical friends and I have a friend and I think my AAS traits have harmed our relationship and they're looking to be able to go back and and explain the situation okay I think from the best way to do it is using a third party and that third party I would suggest could be a blog post or a YouTube video which maybe I would select very carefully there are there are many many out there lots of the women vlogging lots of lots of women posting either conference presentations or personal presentations on YouTube find something which fits find something that makes sense that your friends will be able to relate to and perhaps introduce what you've done with it with an email set or or communication saying you know would you mind looking at this that you know I just I just want you to see I mean the problem with trying to do it yourself is that you'll either get tripped up or you won't know what to say and sometimes there are people out there who are much more eloquent in describing our analysis and we are so I would or a passage in a book even made me maybe somebody's written something which really encompasses what what it is that you feel I would I would seek some kind of objective third passing information source which describes the problem described you and and see if you can broach it that way a little bit less I rest and you have a try and have a conversation that might go wrong and be very stressful okay excellent so those are all the questions we have for today and thank you thank you so much for agreeing to re-record this for us and enjoy your day we're all set thank you all right thank you very much thank you bye-bye you're on all right goodbye

Channel: Asperger/Autism Network - AANE

Views: 38,621

Rating: 4.8000002 out of 5

Keywords: #aane, #aspergersyndrome, #girls, #women, #autism

Id: 9ZnTzMeqHhY

Length: 94min 50sec (5690 seconds)

Published: Thu Sep 15 2016