Adult autism diagnosis: when people don’t believe you

It's actually a pretty common belief  that autism is being dangerously over diagnosed and people are getting  their diagnoses just like: [Oprah style] "You get a diagnosis, you get a diagnosis and you  all get DIAGNOSEEESSS" And people take this belief and think "If autism equals over-diagnosed then you equals lying.  it's basic maths" So here is how to deal with that Hi everyone if you're new to my channel I am Sam,  I was diagnosed with autism in 2019 and I now make videos on autism and neurod

iversity, exploring  the autistic experience that sort of thing here on YouTube every single week. If you think you might  like that kind of thing please click subscribe and the little bell button to be notified every  time i post a video. So let's talk about people not believing you even when you have a diagnosis even  when you have a card, hell I have a card I am a card carrying autistic! I think the most important  thing that you need to remember is, it's not you it's them. If you have receiv

ed an autism diagnosis  and you're pretty sure that they got it right you pretty you feel like it explains a lot about your  life when people don't believe you instead of thinking about yourself and like "Why don't they  see it in me?", shift the focus from you to them Ultimately what do they even know about autism?  Is their opinion actually valid? And this can be a tough one to answer but, "I've worked with  autistic kids" does not make someone an expert in identifying autism in adults, "I've

worked with  real autistic adults in residential care" equally does not make someone an expert on autistic adults  with lower support needs. It happens to me as well quite soon after my diagnosis an acquaintance of  my father's who is a - i don't know - a cardiologist or something watched one of my videos and said  to my Dad, "oh she's not autistic" and it's just like first of all you're a freaking cardiologist,  stay in your lane! And this kind of thing is hard because obviously he has a medica

l degree, I don't  know how much they actually learn about autism in a medical degree probably less than a term but I kind of still get the impression that my dad doubts my diagnosis because of what this guy (who's got no idea what he's talking about) said to him [Exhales frustratedly] But you know it really hurts and even if people  don't say anything you can still kind of hear them thinking it a lot of the time, and being doubted  on something like this, a diagnosis that you've probably spent

a long time waiting for and it's  not just like you walk in the door and get one you know it's hours of interviews and questionnaires  and like it's a very intense process so going through all of that and getting your diagnosis and  then having people not believe you is just like a complete invalidation of yourself. Just remember that people with ignorant opinions about autism are like arseholes... no that's it that's the punchline. So people like this ignorant cardiologist, they can get in the

sea but what about the people around you the people that you can't just say: "Oh well it doesn't matter they're not going to see  me again, I've never even met them" you know what about the people close to you? And you can't really  escape them, severing ties is a very extreme approach to this problem, I wouldn't recommend it, but I'm  kind of of the perhaps painfully naïve opinion that the Slowly Slowly Catchy Monkey™ method does  actually work with most people, especially most neurotypicals. W

hich is why actually it's been  a conscious action not to be a very shouty kind of person on this channel because i don't think  it's a very effective way to change people's minds because people get defensive very easily. Yeah it  turns out people don't like being called stupid! ultimately this is about winning hearts and minds  changing people's opinion and it's not necessarily changing people's opinion of you most of the time  i would say it's changing people's opinion about what autism actual

ly is and how it looks like  in actually autistic adults. When I'm talking to people of a certain generation and let's face it I  think that this is in part a generational problem because millennials and younger typically there's  been a lot more discourse about mental health in general, there's less of a stigma and people don't  have so many years of kind of like this stereotype built up within them. So when we're talking with  people of like an older generation like the boomers for example, I

always like to bring  up Anthony Hopkins because, first of all he's very famous and most people have heard of him, and  he was also diagnosed in his 70s and so that just goes to show that, you know, you can be diagnosed  at any age in your life and it doesn't make you less autistic so there's, he kind of adds this  air of credibility to this sort of non-believing fictional boomer that I've invented in my head  (not my dad). People of my parents generation have heard of him, he is an actor who ob

viously is good  at masking, he's good at acting, who doesn't look autistic. Honestly he just seems like kind of  a super nice guy and I actually follow him on Instagram because he's an amazing artist and  his Instagram is just like really super chill, beautiful vibes (and cats), so I would check it out. Why am I  plugging him? He should be plugging me! But what this is doing is giving somebody a soft "in"  to the world of autism so if people have very um negative stereotypes about autistic peo

ple you  know they think of it very much like a disorder um a disability, they don't associate you with that  and so what you have to do is you have to kind of show them that autism is not about kind of  like just permanent suffering, well maybe - depending on the day - but you know it's it's  not about this permanent state of tragedy and misery, you know autistic people can live  fulfilled lives, we're just a little bit different. Using examples like Anthony Hopkins  bridges between what they t

hink they know about autism and "hey look this guy that you probably  trust and recognize has been diagnosed therefore autism might not be what you think it is!" and  if you can find similar examples to this that involves giving people little snippets, it's kind  of like a snippet approach, because you're not just expecting, you're not slamming Neurotribes down  on the table and expecting them to read the whole book which it's a big book you can't just give  people this overwhelming amount of in

formation and expect them to be like "Oh! Well my mind has  changed!" that's not how people work (because most people don't read as well). But I also want  to mention the fact especially when you're dealing with family that a lot of people won't  believe your autism diagnosis because when you talk about your autistic traits they are traits  that they themselves might have and so you end up with these frustrating conversations where you  say, "Well I really struggle with this" and they go "Well w

e all do that!" and actually we don't all do  that, that is an autistic trait but it has become normalized within the smaller family group perhaps.  So my theory is that a lot of people who doubt you actually do so because they have a lot of autistic  traits and maybe they just don't want to recognize something in themselves. It's not all the people  who doubt you for sure but I know that there is like a little bit of a pattern there, especially  if they've been undiagnosed for many decades and

have just struggled through life and so have  built up this mentality that that's just the way of the world, life is a struggle, this is how  it's supposed to be, you know, get over yourself! But I think that when you have struggled  being an undiagnosed neurodivergent person it just seems like, well of course life is like  that, what are you talking about? You know and you've completely normalized the sense of otherness from the world, you're like, "Well that that is how it is". So now i want

to talk about the  people who think that only the most disabling kind of autism is real autism - REAL AUTISM. In their  heads "real autism" equals somebody who can't talk somebody who maybe has a comorbid learning  disability, who cannot live independently and has violent outbursts, and anything less than  that is, in their eyes, not real autism. Actually i think this is a point that i might have to do  a full video on because it's it's a very widely held belief. But this is harder to argue wit

h  because they start from a point which is true in that there are autistic people who cannot live  independently, who cannot speak, and who need you know round-the-clock care to deal with their  autism, although most of the time that involves some kind of a co-morbidity, whether it's a  learning disability or epilepsy or whatever. But you know we talk about autism being a  spectrum and I think it is kind of like wildly misunderstood what a spectrum actually is you  know most people think, "Well

that means that you start mildly and then you get progressively  more autistic, and then you have the severe end of the spectrum", it's like end of the spectrum.  That's not really how spectrums work, but whatever. All autism kind of starts at spicy anyway doesn't  it? But there are a couple of different ways of explaining the autistic spectrum, I've linked a few  resources down below that I think also do a great job of explaining it, but what I like to think  of is you know those mixing boards

that DJs have? You know, there's like sliders there's knobs  there's all twinkly lights (I think I have actually been in a club once) and everything things are on or off and up and down, and it's  just a delicate combination of using all those functions and like you know creating music out of  it. So each autistic person has a different setting for their different song, so it's like you know  that slider is sometimes up and sometimes down but that is kind of like the metaphor for autistic  peop

le in our daily lives, and in this analogy a neurotypical person might have their experience  set to standard (or auto-tune if you're feeling spicy). So think about this way you wouldn't go  up to a DJ working on his mix board - I don't know what they're called! Mix board? What is this? You  wouldn't go up to a DJ working on this and be like "So how loud is the music you make? Like how loud  is it? Is it like quiet music or is it loud music?" and that's what you're saying when you're  saying "We

ll how autistic are you? Are you mildly autistic or are you like really badly autistic?"  Although most people don't actually ask you that because they assume talking to you that you have  to be mildly autistic. So you wouldn't ask a DJ how loud is your music because you would ask them  things like, "What kind of music do you play? What is your creative process?" Maybe? I don't  know, what would you ask a DJ? I'm not sure I want to make a point that this is all very  hard work, it's hard work to

constantly educate people around you, I'm afraid that I don't have  a better solution for this than the people who are capable doing the work when they can. I mean I  literally started this YouTube channel because I didn't want to have the same conversations with  people over and over again, and the trouble is you can send people articles or books or whatever  but you can't make them read them and that's also another reason why I started a YouTube channel  even though I'm probably more of a wri

ter because people don't really read. If something's on the  internet people will skim read - people don't read! People don't read. And that's weird because  apart from the fact that when my ADHD symptoms get really bad and I can't read I actually do  really like reading so it amazes me that there are people who just don't on an everyday basis. So  people like to watch videos, even though I can get a little verbose at times, and you think, "Sam! Maybe  you should have written a book on this inst

ead of doing a 25 minute video on trauma!" No I'm just  kidding, you guys like that, but you know like even the longer videos people are far more likely to  sit down and watch them, and when you have short videos people will share them and that is kind of  like why I decided to create this kind of content actually. So supporting creators who make content whether it's podcasts or videos like this or blogs or cartoons, comics, that kind of stuff,  is really important and this is sounding a little

bit more self-serving than I meant it to, I don't  just mean like "oh everybody come and support me!" but in the world of social media, engagement pushes  algorithms and engagement increases visibility and so every time you're engaging on any  creator's post you are furthering the cause of neurodiversity, you know you are pushing  autism into the mainstream. The neurodiversity movement is actually decades behind the gay  rights movement, imagine how many neurodivergent people there are in arts

and entertainment perhaps,  like in music, in acting, in all of these kind of creative things, there are loads of them, but how  many people could you actually name who are "out"? Okay we've talked about Anthony Hopkins, there's  like a handful of actors, reasonably famous, but I think that if you really looked into  it, there would be a load more people that a lot of people have heard of, who are actually  autistic, but remember that this is a movement that we're living in, we're not living in

a perfect  world where people understand autism, even though we might be able to see, it's so obvious, other  people just don't know that much about it, and so education is really at the forefront of how  I believe that we can start to make a difference We are starting to break into the mainstream  awareness, but we're not there yet, we're still kind of at the point where when you talk to someone  and I say "Oh I do a YouTube channel about autism" they go "Oh my nephew's autistic" or something l

ike  that you know, like people are aware of it, the stigma is starting to go, but to break into  the mainstream, what we have to do is we have to make it accessible and digestible to the broader  neurotypical audience, as well as the autistic audience. Also I just think that the reason that  autistic people suffer is because people don't know about autism and so if we can change that,  that is the key, and that is why I've brought up this point about sharing creators because there  are so many

people doing amazing work and their work is not getting the visibility that it  deserves. So yeah you could share this video, you could like this video too, whenever you see a  piece of content that really resonates with you, engage with it, even if you have to create  like an anonymous account, a social media account so you can do more sharing if you're  not ready to be out yet. Once we reach a tipping point we won't all have to do this intensely  tiring emotional labor for ourselves because th

e times they are changing. Thanks so  much to Annette for commissioning this video, I thought it was a really great topic and I hope  you liked the video I'll see you next time, bye!