 got an interesting one here. This isn't from an autism creator, just from PBS. How autism goes undetected by PBS vitals. Apparently, they're a health professional licensed in the US. I feel like this is going to be a very medical focused video, but let's let's have a look might be quite interesting to hear the experiences of autistic adults going through life being undiagnosed might be quite relatable to a few of you in there. When I was growing up, I had an idea that I was different. I was like, oh, this is just how everyone goes through the world. And I'm just not as good at it. Well, it turns out other people don't actually do that, which explains a lot. That's Kip Chow. And they represent a growing population of individuals that are diagnosed with autism or autism spectrum disorder ASD as an adult. Now, typically, autism is thought of as a developmental disorder that can be diagnosed in childhood. In the early 2000s, the CDC reported one in 158 year old children had an autism diagnosis. But in 2018, that number increased to one in 44. However, that's one in 44 children that doesn't necessarily represent those over the age of 18. So you're an adult and you think you're autistic. This also isn't representative of increasing levels of autism in the population. Just better detection. What are your options and where do you go for support? First, let's talk a little bit about the language we use to describe autism. Raise your hand if you've seen or heard someone say, I'm a little on the spectrum. Or maybe you've heard someone say, yes, they are autistic, but they are high functioning. Well, you might not know and I'm here to tell you, but most of this language is pretty offensive to those that are autistic. Terms like being a little bit on the spectrum or high functioning or low functioning devalue the autistic experience and create assumptions about the person. Sheena. Wow, you've actually talked to autistic people. Wow. You don't really, the only reason why I'm so surprised is because it tends to be with a lot of these kind of medical professional people or channels or mainstream stuff that they very much just tend to focus on the medical side of things and they don't actually incorporate stuff from people who are actually autistic. So it's really nice that they're making that. I don't necessarily find these offensive. I think if you're struggling to understand why this might be offensive to people, I can explain it. The first one I think that she mentioned was everyone's a little bit autistic. The intention behind someone saying that is to make you feel less alone, to make you feel less weird, less of an outcast. That is the intention. The way that it comes across is that you're not autistic because everyone's autistic or everyone's just varying levels of autism. Very much devalues the experiences of autistic people. High functioning and low functioning, definitely not something that is socially appropriate to call someone. The issue with saying high functioning is that it very much undermines just how much supports one may need. Come an example that I give with myself. I'm very good at speaking, communicating and talking about autism. Oh, I'm having a haircut fit. I need some water. I'll go get some water after I finish one. Saying, come on involuntary brain, stop hiccuping. Am I okay? Yeah. Just hiccuping away, yeah. So high functioning very much undermines someone's support needs. I'm very good at speaking, doing all that. I have some support needs in other areas of my life. It's going to keep happening, isn't it? God damn it. Low functioning on the other hand, it's kind of just like a flat insult, isn't it? Like you say someone's low functioning. It's like, okay, thanks. So at either end of the spectrum in that sense that there is potential to offend somebody. So that's why people from the autistic community tend to talk about autism just in general. They just say autism. They don't make distinction. This is going to keep happening. I need to go get some water, guys. God damn it. Why is it the first thing that happens when I come back after it just completely going away? Now it's decided to come out. It's probably because I'm speaking. Or low functioning, devalue the autistic experience and create assumptions about the person. Using a label like high functioning implies certain assumptions about a person's disability that are not wholly accurate. One person might present with fine motor skills and have less trouble communicating, but still struggles with sensory input or relationships or even employment. Autism or being autistic is not about, I guess, disorder as you would probably get from the medical term, which is autism spectrum disorder, but instead it's more about a specific way of seeing and interacting with the world, which is different from most people. Folks who are autistic may experience life in a much more intense way. They may prefer things to be more expected with less surprises. They may have more difficulty doing things simultaneously, like listening and looking and attending to what's happening. And at times they may have difficulty with communication in the way that others do, but what's really important with when we talk about autism is to remember that a lot of these are differences, not necessarily deficits for every person with the diagnosis. Really really nice video, like very comprehensive. I held my breath for about 20-30 seconds. I think it's just something that I'm gonna have to deal with. You sure, you sure wish there was sound? You want to hear me here copying in the background? I mean, fair enough. Maybe not though. Might make it a bit annoying for like anyone who watches that on replays. Let's look at how autism spectrum disorder might appear on a wheel, as opposed to a left-right scale. And let's place some markers that represent the diagnostic observations that are used to screen someone for autism. Things like social awareness, sensory processing, and motor skills are located at different points on the wheel. But since the dawn of time, we know that no two people are alike. Same thing applies here. One individual might present with arm flapping, but they are verbal and sometimes miss social cues, while another might fidget and struggles with sensory processing such as bright lights or loud noises, and it's non-verbal. 100%, most people think it is just like a functioning scale that is just you more or less autistic, which is not, it's not the case. The functioning style is there to provide people with the support that they need. That's to raise people into groups in order to know how much support. It's mostly just used in terms of like social context and for scientific literature, in like the social care, healthcare kind of aspects to it. I don't think it's appropriate really socially to talk about said functioning labels. It's a very personal thing. I think that is another aspect to functioning labels. It's a very personal thing to somebody, and a lot of people can make assumptions about certain things. And then the thing someone told me the correct one, like a radar diagram of different traits being hired than others, that's a really good way of accurately visualizing what someone's autistic traits might be like. 100%. It's a good video so far. That's because the spectrum is an umbrella term that covers a large array of neurological conditions, including autism, ADHD, and Asperger's syndrome that are so closely related that they are hard to define individually. Sometimes this is referred to as neurodiversity or being neurodivergent. Neurodiversity is a concept. When has this video been made? Eight months ago. I mean sorry to burst your bubble but Asperger's syndrome is no longer a thing, apart from if you were diagnosed with it when it was a thing. It's just ASD now. All of those are the kind of different diagnosis throughout the window. The concept was developed by a social worker and an autism advocate named Judy Singer. She talked about it as an allegory with biodiversity. So in any healthy ecosystem we need to have a huge diversity of plants and animals and species to make that ecosystem work well. That's normal. And as humans the concept of neurodiversity is the same so that autistic people and ADHD people and other diagnoses that would fit under that umbrella are all part of the same community rather than there is a norm and then if you're divergent the goal is to fix and return to the norm. I think this is a this is another thing that this you know this this perspective of neurodiversity is very much something that I understood it as like it's kind of like a somewhat like a counter movement kind of the social model just that part of like the medical community but it's not like that. It's it's literally it is natural variations in the human brain. So you can also have acquired neurodiversity or innate neurodiversity. So pretty much everything is covered by neurodiversity when it's a variation in the brain. Talking about it in terms of okay we don't need to make these people normal it doesn't always apply to every single diagnosis that's covered within that neuro umbrella like epilepsy you know I'd very much I feel like most people would be pretty happy with epilepsy like being fixed. You can think of other things like what think of something genetic that's neurodevelopmental that is extremely detrimental to a person and people around them. Psychopathy that's that's a neurodevelopmental thing. Natural variation in the human brain I guess if we're using those parameters for understanding what neurodiversity is. Well I don't know a lot of people have different various thoughts about different ideas of what neurodiversity should cover. I don't know it's kind of removed some of the the sting and the purpose of the community to some degree. I felt very strongly that you know we should try and advocate for like as she's saying for like autistic and ADHD and perhaps some other diagnosis to being fully accepted and adjusted for and integrated in society rather than fixed. I think there's a very good argument for that kind of thing but when we lump everything into neurodiversity what is fighting for neurodiversity? I don't know. It's very confusing for me to wrap my head around it. You know these ideas these things that I talked about a lot also come from other creators you know so I feel like it's okay to have deviants in that but like a deviation in it rather. I'm not sure if I completely agree with it though. It is bit that it does slightly neurodiversity because it is a natural variation in the human brain. It covers everything you know so I can't really argue against that. I'd be interested to hear what you guys think of that. This is where the challenge begins for individuals that were misdiagnosed or were not screened for autism during childhood. They went through life into adulthood forced to conform to societal norms that did not feel natural to them. This is called masking. For me masking is a lot about we'll say it's a game. There's a game going on and everyone's playing it and everyone knows the rules but there isn't actually a manual they just know it and I don't get one so I kind of had to learn from observation from messing up essentially and picking up all those rules and integrating them into myself in a way that isn't necessarily natural. I do mask because well I kind of have to be able to interact in the world in the way that I want to whether at work or at school. In some ways I don't do it as much but I still have to in order to do the things that I want to do. Adults that have similar experiences to Kibb might not have the same pathways to it. I wish so if they didn't have to live life like that. I don't mask. It's not really something that I do. I do understand neurotypicals quite well and I spent a long time understanding them but I wouldn't say that I mask. No it's really hard it can really interfere with your sense of self, your identity. Like you perceive yourself and you can feel very fake and you can feel like the connections that you have are fake and relationships, friendships, workplace relationships. All that stuff can just feel a bit false and it's also very stressful to to social camouflage. I feel like masking is a component of I don't feel like it is a component of social camouflage which covers pretty much every way that different people like autistic people can alter themselves into appearing less autistic or perhaps like less ADHD even. Masking is a part of that. There is other aspects to it of course. If you do want to know more about that stuff I do have a video on my channel about and there's sort of different subcategories actually is masking if you're interested in that. Yeah it's really sad to hear stuff like that and it's the kind of thing that I hope to change with my work. To a diagnosis girls are already at a disadvantage during the assessment process. According to a recent study, the theory that the ratio of males to females with ASD is four to one might be a bit off. The study suggests that a closer estimate is a three to four ratio with 80% of females remaining undiagnosed at age 18 due to the fact that girls are more likely to camouflage in order to meet societal norms. But what if you're from an underrepresented demographic as well? Maybe English isn't your first language or you're located in a rural setting that doesn't have access to private clinicians that are qualified. That's the thing qualified to test for autism. Or if you're in a culture in which personality traits or behaviors align a little bit more with the autism side of life, you may not even be picked up at all. There's something being different because it's based on norms and abnormalities and stuff in terms of like diagnostic literature, the criteria. There is a heavy subjective component which is dictated by the culture around the diagnosis. Sometimes when you put too many things under one umbrella it is hard to advocate for the different groups. Even if there is overlap the differences can be very far, very large, 100%. And the desired outcome will be different as well which is the thing that I find difficult. You know, how can I advocate for neurodiversity in a workplace? If I was to do so I'd be advocating for epilepsy in the workplace which just I mean obviously like having epileptic people work is a good thing but like do you know what I mean? It's not like it's not punchy, it's not like we're advocating for the continuation of a certain subgroup of people as opposed to getting rid of them and curing them and treating them and whatever to be more normal. That's what I feel like it should be about but as you said you cast the umbrella too large, it kind of reduces some of the meaning and the power behind it. I had a meltdown at work because of the lights never happened before in public, the mask could not hold. I'm sorry to hear about that. I have come across people who are very, very high maskers and they don't cope with it very well. I come out of particularly two groups of individuals. One who is just chronically lacking any self-esteem, chronically stressed, chronically anxious just all over the place because they're trying so hard to fit in and be perceived as normal and to you know be perceived as great people to be around. That causes them immense amounts of stress. Then they come across other autistic individuals who don't spend a lot of time socializing with people but when they do they mask heavily and then they have a big dip in energy afterwards and they have to recuperate and there's also the people who mask all the time but they use unhealthy coping mechanisms to get them through to alleviate some of the added stresses of masking and the mental health impacts and the identity impacts. They seek unhealthy methods of like soothing themselves basically. I've never come across an autistic person who masks and it doesn't impact them negatively to some degree. Also just want to point it out I have come across many autistic people who have masked and it's given them benefits as well like in their life jobs particularly. It's a really big trade-off that you're going to make and I think a lot of people they see it as a very black and white thing. You're even masked or you're unmasked. It's not like that. You can choose what you want to show people and who and which people and in what environment if you really want to. You could just mostly exist in an unmasked state but when you have something important like meeting someone for the first time or a job interview or you know little things like that yeah why not if it helps you and you feel if it feels like it benefits you in a space which is not inclusive to autistic people unrepresent like I can't fault that and also avoiding negative situations not sticking out particularly when we think about school very difficult place for autistic people. The masking is basically a defense mechanism to some degree to prevent things like that happening to us. So there are a lot of positives and a lot of negatives and I'd say that in general you can do a lot to unmask and I'd recommend unmasking particularly around people that are very close to you and in your own space. You can reach further outside and unmask further if you really want to but as long as you have that those two areas in control you're not masking both those two areas and you are actually chilling and being yourself and not focusing too much on how you're being perceived all the time. 100% like it's it's going to have a really positive impact on you. Then what? So our concept right now of what does autism look like is very white male Eurocentric. We need to change that. One of the things we see quite a bit with young particularly people socialized as male who come from other cultures is eye contact in particular is a completely different concept in many parts of the world. So they could be coded as having bad or low eye contact when that is actually the cultural norm for their area. So this is an important piece for assessment is assessors there you go I can't click but if I could you would hear a clicking sound because 100% there you go that's the cultural the social aspects to a diagnosis in order to establish what is not normal you must first have a normal. There's need to be constantly training in in decolonialism in cultural sensitivity and cultural awareness and clients should know whether assessors have had that training. For those that have gone through life not recognizing the signs of autism they might think they are too old for a diagnosis or what's even the point. That's a very strange like collection of traits but it feels like it's a very random I suppose it's perhaps the most relatable to some people. However a diagnosis opens up many support systems that you might not be aware of. There are two main benefits that I talked to clients about the first and most important is adults and here we're talking about adults who are able to use verbal language we don't want to forget that the autism spectrum is incredibly wide and many autistic adults have additional disabilities and we're talking about them as well but in this case self-understanding is an incredibly powerful thing that can come out of an assessment to finally under. It's very important I think to make that distinction sometimes because I think for a lot of outlook on lookers if their parents and even if they're just kind of general part of the general public I don't know a narrative because looking on this they'll be like well what are you talking about like some people some autistic people they do have significant intellectual disabilities amongst other things which requires them to have an immense amount of support at all stages of their life. It's important to pay somewhat attention to that because it is somewhat different like it is pretty different to someone who doesn't have an intellectual disability who perhaps doesn't have as relatively high support needs there's nothing ableist or horrible about saying that just because you're pointing something out that the reality does not mean that it's inherently a bad thing if you were to say I'm not even going to say that but if you were to say some some bad things about a particular group of autistic people then yeah that's bad but it's with mentioning stuff like that because I think it's definitely a very common route of miscommunication and misunderstanding for autism parents and also neurotypical watchers. I understand that there was nothing wrong with me all along and that I was right when I felt different from others that knowledge itself can help alleviate and treat other symptoms of depression and anxiety. The second thing that you get access to is protections under the Americans with Disabilities Act so perhaps you are someone who works as a stock clerk in a very busy supermarket and the assessment identifies that you are hypersensitive to noise. An assessment can give you the legal rights to compel your employer to allow you to wear hearing protection. The only thing about this is this is assuming that they follow the law and they don't try and think of other ways to get you fired because they don't like that you're asking for adjustments. I go on the record now I say this this is kind of a big blunder of mine in the past where I've said if you need adjustments go and ask for them tell them you're autistic do all of these things. In an ideal world scenario this would all be very smooth. Some people had had taken my advice I think one particular person took my advice and actually got fired very like pretty soon after asking for those adjustments so I would definitely be very wary of that and I feel I feel awful about that that I didn't highlight it as much as I should have. Thank you Brie for sending me a super chat. I don't think I've had a super chat before that's cool. Is that a mic drop moment? That's pretty funky. I thought it was a cookie for a second. Thank you very much Brie, much appreciated. If you guys do want to support the channel make sure to like the video and consider becoming a member and you get a little it's only 99p you get a little infinity badge next to your name supports me helps me put more stuff out and in the future I will be segmenting different parts of videos that I put out the presentation style videos that I do and putting into the members area so if you want to support me in my self-employed venture want me to do more of these streams etc that would be grand. Or perhaps if you're in college to take a test in a separate room and it makes it more difficult for an employer to fire you for manifestations of your disability. In a theory they can always just give some vague reason to why they're firing you that also happens sadly. The tendency for our society to enforce things like this enforce these these these needed reasonable adjustments it's not it's not as strong as you would think and a lot of companies and organizations might just become irritated with you you know you've been employed there and you haven't needed reasonable adjustments but now you come in to ask for them like why are you trying to give us more work and become difficult and oh I don't like you anymore I'm going to fire you. Some people can be like that and it's really sad it's actually I think a component of reasonable adjustments in the US that if you can't meet their needs that you fire them which I don't think should be anywhere near legislation or like advice about reasonable adjustments I think it's despicable. Even with access to the clinicians that can provide an assessment there's no guarantee of a diagnosis due to the high demand for testing there can be a waitlist then if health insurance doesn't cover the cost of the test it can cost several thousand dollars out of pocket and again the diagnosis could be missed entirely. Yeah unfortunately we have at my center I'm the only diagnostician right now and my waitlist is a year long and that's not good and we are working on that but we need so many more clinicians in the area. So she's a private diagnostician and she's a year long waiting list. God damn it. Like in the UK you can get it free on healthcare they say that you should wait a minimum of three to six months. Man it's not like that it's like God knows two to three years sometimes and even then you get paired with someone who's just incompetent at diagnosing and even if you find someone to diagnose you who's a private but so in private practice you do get a four count money for that my god and it will get you a lot faster you know. I wish it wasn't like that especially in the UK the NHS is very so burdened at the moment. Part of the reason that the waitlist is so long is good and that is that we refuse to let anyone assess if they don't have the background so we're working on finding some folks that we can train additionally but this is a nationwide problem there is a shortage of fully trained mental health clinicians. If I was a person wanting an autism assessment I would go ahead and get myself on as many waitlists as I can because sometimes those waitlists do clear up quickly and if you're on one I would check in about once a month and see where you are in that list. All right now y'all we didn't cover it all but understanding why the diagnostic system has inherent flaws is only part of the equation the second part is how we talk about autism. Being autistic isn't something that needs to be treated as much as it's about being able to understand yourself and find ways to better cope with the demands of society like but also flourish get yourself into a position where you are living the autistic dream. Like for some people they go to counseling for some people they find community support and that's enough for them for some people there may be medications that help alleviate some of the manifestations of what being autistic looks like like many autistic people are anxious to have anxiety so maybe medication for that will help I think if someone is an adult I would say that the best way of combating this that we really should pay a lot of attention to is the school system. Mental health tends to develop in our formative years a lot of the time I would say it can obviously happen at different stages in your life but mental health that sort of follows you from childhood can just be so difficult to shake like it's just really traumatic time in your life dealing with all of this all of these difficulties crazy we need to really fix the school system because there is so much bullying and isolation and discrimination which is just so massively impacting the life quality of autistic people and that's not even going into the world of work so many so many different areas that really need to be really needs to be worked on. The adult and says they're autistic and doesn't have a professional diagnosis I don't think that makes them less valid I think it means that they were overlooked and that in a way the medical system failed them in a way and that's not on them to justify themselves to anyone but more about considering how systems overlook people not because they did anything wrong but just because the systems tend to be oppressive and tend to discriminate. There are so many times in my career where cultural norms played a huge role in how I treated a patient like when caring for a patient from China they may be more likely to underreport pain or even in black women they may be reported as being irritable or non-compliant when really they are really just depressed anxious and feeling insecure about their care. This episode really educated me on ways that I can apply neurodiversity to my practice something as simple as turning down the lights or closing the door could really greatly improve someone's security and their care and now I have some insight to refer I suppose as well if you're thinking about like the Japanese population are they have a big work culture over that like being overly conscientious if you're autistic and you get hyper-focused on work that's like perfect for you isn't it maybe not to the extent that they work work themselves but you know there's there's so many of those sort of social cultural aspects to it. Refer them to a clinician that can help check out our notes in the description to help you or someone you know find information on finding someone that can provide an assessment for autism and support groups in your community let us know in the comments how this video challenged your understanding of autism let's talk about it see you in the comments and always always thanks for watching see you next time on PBS Vitals thank you very much Sheena and PBS Vitals you guys solid video less medical than I expected really nice actually really good that was how adult autism goes undetected by PBS Vitals go and check them out give them some love if you haven't already I'm going to drop them a customary subscriby if you won my sub give it a bit of a like there