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Autism & Society - Self Diagnosis & Gatekeeping

Autism changes everything when it's discovered in adulthood. The realisation that one is autistic puts perspective on a life that may have been confusing and frustrating up to that point. Diagnosis can be a long road though. Thankfully there's a community full of autistic adults ready to help - except for a few... #ActuallyAutistic#AllAutistics#AskingAutistics You can buy the T-shirt worn in this video here: Find more at Made with Shotcut, open source video editing software Images, stock video, sound effects and music not created by the channel have been obtained from YouTube creator resources or from the following sources: (author - Videvo) Every effort has been made to ensure that copyrights are respected and that material used is in the public domain. Where copyrighted material is used it is under the terms of "fair use" for educational purposes. All copyrights remain the property of their respective owners.


Unknown Speaker 0:04

Hi, welcome to another unscripted or unfiltered automatic video. It's been a very busy week though nowhere near as dramatic as last week, we're busy converting one of our upstairs bedrooms into a home office to make my work doing this and my day job a lot easier. Thanks for everybody who's asked after Mrs. A after last week's drama. She has a lot better than she was feeling last weekend, she still got some tightness of breath. But we're investigating the possibility it might be an allergy to something new in the house. And we've also found out it could be something to do with one of the medications she started recently. So we'll be talking to the doctor about that next week. Hopefully, we'll get to the bottom of it, but she is a lot better. So thanks to everybody for asking and for your messages or support. So on to the subject of today's video, all prepared again. As usual, got my cup of tea, no gray this week it's Twinings number 22, black tea with a caramel note to it really nice.

Unknown Speaker 1:11

A little while ago, I did a video that I called 20th century autistic. I'll put a link to it up here. We talked about my diagnosis in the 80s. And how my life in relation to autism develops over the next couple of decades. In that video, I talked about how going online in the mid 90s was a game changer for me and for many other autistic people. Those of us who had a diagnosis at that time, whether it be autism or Asperger's Syndrome, suddenly realized that we weren't alone as we had felt. But there were 1000s of others like us online, talking to each other and sharing our experiences. We met up in chat rooms run by AOL or on IRC, the old internet Relay Chat, or we set up websites talking about our experiences back on geo cities and similar kind of situations. Everything went well for a few years, until around the turn of the century, we started to see the rise of the aspi supremacist. Now what's one of those you might ask? If you're part of a marginalized community, there are different ways of dealing with it. You could just shoulder the burden yourself and just do your best to struggle as an individual making your way within all the limitations and stigma that might be attached to you. Maybe even hiding who you are. An awful lot of autistic people do that. You could, like I and many other advocates and much of the autistic community have done, try and fight back. If you could try and correct the misunderstandings the ignorance and prejudice that leads to the stigma and the limitations on our lives. Or you could just get depressed about it. This is unavoidable for some people, the pressures on some people in the power, they have to actually change their circumstances can be too much. They can end up withdrawing into themselves withdrawing from life and becoming very, very unhappy people. They asked me supremacists try to use that anger and turn it into a belief that they themselves were separate from the rest of humanity. They refer to neurotypical people as normies, and sheeple. You might have heard similar kinds of phrases coming out from conspiracy theorists, of late with all the people who come up with COVID theories about 5g masts causing COVID, about Bill Gates trying to inject us with microchips, everything from them to anti vaxxers and flat earthers. They all come up with the same ideas that they come up with outlandish point of view. And anybody who disagrees is a sheep, that they're being defrauded by the society around them. It's their way of rationalizing their unusual view of life. And the SBC promises were no different. There were so many of these around that I became disenchanted with the whole online autism community and I pulled away from it lasted for about 15 years. Not long ago, about two or three years. Shortly before I started automatic. I faced a crisis in my own life, which was in part related to me being autistic. At that time, I could have really done with a strong community of people who thought like me behind me, but I didn't have it. So I faced that alone. But what it did do was Teach me just what we're up against. I'd gone into that first category of just trying to deal with it on my own of, of working within the confines of society by masking myself to try and look like one of the others. And it led me to pain. Allow me to misery When I came back into the fold and rejoined the online discourse between autists, it was good to see that the supremacists had kind of faded away. They were still there, but they were very much in the background. But they have been replaced by a new kind of agitator, and much more insidious kind of malcontent. This type pretend on the surface to be autistic advocates. They make alliances with people who otherwise would be their natural enemies. We're talking the martyr parents who exploit that child's autism to make money or to gain sympathy. Those who love the child but hate for the autism. They suck up to the lobbyists of governments, the people who sell ABA as a treatment, but actually tortures the kids that are subjected to it. They make alliances with anti vaxxers. Effectively, anybody who criticizes the majority online discourse around our equality about neurodiversity, they're on the side of it's the old, the enemy of my enemy is my friend kind of idea.

Unknown Speaker 6:09

The thing is that these malcontents, these so called advocates, are actually using all these people for their own agenda. They only have one thing in common. They want the cure for autism. This loose alliance of people have been methodically attacking adult autistic people online. They claim that doing so is actually compassion for autistic people. How do they get away with this? They do it by labeling those who they criticize, as being fake, or being just mildly autistic and not understanding the suffering of other autistic people. They deliberately provoke people they prod and push, they post extremely insulting or completely erroneous information. In an effort to lure people in to bite back. They poke and they poke until eventually people get really angry. They come back at them with really, really strong comments sometimes, really, really upsetting. And then they screengrab it, then delete their comment, take that screengrab and then use it in articles in the media online and in print, saying that, Oh, this is unprovoked look at how they're attacking us. We've now come to a point where there are books and articles being published sometimes in otherwise respectable journals that attack autistic adults, claiming that doing so is actually an effort to protect autistic adults. They're actually undermining all the progress we've made all the work that we've done over the years to improve understanding, in an effort to achieve their own agenda. Why would an artist attack other artists who are trying to create a better world for all of us? We talked earlier about how people deal with being part of a marginalized minority. There are lots of different ways of dealing with it. But a certain element start to blame themselves, they internalize it, it makes them unhappy, it makes them depressed. In some cases, it goes even further. The suicide rate amongst autistic people is massively high compared to the non autistic population. For some though, they get very specific, they actually blame their autism for everything that's got wrong in their lives. If it weren't for being autistic, they might be rich, successful, famous. They might be loved, they might have romance, they might have all the things that they feel they're lacking in their life, if they weren't autistic. There's only one solution for them. It needs to be cured. In many cases, such people have in the past, discovered the autistic community online and reached out, they've started to be part of it. But they've seen the struggles that we face, and they've seen them as too great. They're mountains that can't be climbed. So instead of working alongside us, they've chosen to fight against us. It's just accepting the status quo, but fighting against your own in order to achieve what you want, rather than the common goal of everybody being accepted. One of their favorite tactics is to undermine the legitimacy of anybody who disagrees with their mantra of cure at all costs. They like to suggest that autism is over diagnosed these days that an awful lot of people with a diagnosis shouldn't have one. They point the finger at often prominent advocates and well known autistic public figures and claim that they're fake, or that their Autism is so mild, that is not real autism. They focus a great deal of their bile on people who are self diagnosed, or I prefer to say self identified. Now, why does Say identified rather than diagnosed. The Scottish census I refer to previously also holds some other interesting information. There were far less diagnosed autistic adults in that census than there were diagnosed children. Now that's wrong, it should be two or three times as many. But so many of us have gone undiagnosed. Over the years, we've slipped under the radar. Nobody noticed us at school or we were born at a time when autism and the spectrum wasn't really considered a valid diagnosis, that we've gone through life just feeling like outsiders feeling alone. Autism is not a set of behaviors detailed in some expensive diagnostic manual. It's a way of sensing the world, a way of thinking, a way of processing information, which itself makes a difference to our expression and our behaviors. People on the outside those who who give out the diagnosis can only see the behaviors. But what we talk about online, is how we think how we process

Unknown Speaker 11:09

somebody can come along and see that I think, well, that's how I think that's how I process things. People are not so objective about their own behaviors. But they're very objective about their own thought processes. Nobody can know somebody's thoughts better than the person having them. And when they see their own thoughts and those of somebody else, and they, they're the same things, or they go along parallel lines, they're going to identify with each other. The moment somebody realizes that they might be autistic, is an epiphany. It's a life changing moment. They've gone through their whole lives feeling like an outsider, that they don't understand the way the world works, or why people make the decisions they do. They don't make sense to them. And yet, they stumble across an online community of people who think like they do. They identify with how we see the world. They identify with the differences in our senses in how we approach problems and how we express ourselves. They may have experienced meltdowns or shutdowns themselves, they may have been constantly pushed to the margins and told that they were weirdos freaks, they didn't fit in, that they were imagining things or even misdiagnosed with countless mental illnesses, that the treatments they were given for actually made them worse. That epiphany is not technically speaking a diagnosis, though. And that fact is being used against those people and the entire community. Everybody knows that a diagnosis is something that comes from a doctor. So when these malcontents write their articles, or go online, they use that term self diagnosis as a way to gain sympathy from the general public. The claim that self diagnosis is appropriating something that is not a person's right to take, it can only be given, it cannot be claimed. Saying that one has identified as very likely being autistic, seeing the possibility, the likelihood that you would get a diagnosis. If you go down that route. And most people who are self identified do, then all you're doing is opening up a possibility you're reaching out to a community that can help you. That's not the picture that is being portrayed by these malcontents in the media. They want people to believe that autism is it is only a serious affliction that blights everybody's lives and needs to be eradicated. The more people there are, who are leading lives, which have the potential to be successful, if only they weren't being pushed away. That totally destroys their case. They don't want people like me or like countless other advocates that you'll come across actually saying, hey, being autistic doesn't have to be that bad a thing, that actually our lives wouldn't be so bad if we were treated better, that the disability isn't inherent within autism, the disability is as much caused by the world around us as it is any differences in us. They've lost the case. And they won't let that happen. So they have to undermine us. They have to erode any inroads we have into public opinion and public awareness. I'm 50 years of age. I've had my diagnosis for some 36 years. The main reason that I left the online discourse back in the early 2000s was because of the activities of the aspi supremacists. If I didn't have that diagnosis, and I came online now, with the life I've led, and started seeing what other autistic people were talking about, I would identify with it. I may well be myself at this moment self identified if I were in that circumstance Dance. I would hate to think that those self identify people were scared away from reaching out and finding that sense of community of support of camaraderie. Because of the activities of the people I've been talking about. They need to feel part of something just as I did when I discovered that community back in the 90s. In the UK, healthcare is handled by the NHS, the National Health Service. On the NHS, it can take months to get a diagnosis of autism, even for a child. For an adult, it often takes years, you'll hear the old tale where somebody's got a lot quicker, but they're the rarity. In many cases, before we even get to the diagnostic process, you have a pre assessment where some psychologists will decide, have you got enough traits for me to recommend you for the full process of diagnosis. I've heard of people being turned away because they were in a relationship because they had friends or children because they had a job, even that they recognize the difference between a happy face and a

Unknown Speaker 16:06

sad face emoji. Even going private isn't always the answer. I've heard of local authorities and even employers who will refuse to accept a private diagnosis as valid even though that's technically against the law. In other countries, like the US where healthcare is completely corporate, it's completely private. diagnosis can cost anywhere from a few grand up to 10s of 1000s of pounds. It's not easy to get that kind of finance, sometimes, especially if you don't have work, and there's a lot of unemployed artists. There's also people for whom a formal diagnosis would in the current climate harm them, it may damage their careers or their future prospects, either by stigma or ignorance or because of arcane rules in place that might actually prevent them from doing their jobs with a formal diagnosis. There's lots of reasons why somebody might have, at this point in time identified as being autistic, who wishes to have a diagnosis, but either can't afford it is on a waiting list or simply can't risk it. As a community of like minded people sharing the same struggles, the same ways of thinking and approaching problems. What kind of monsters will we be to exclude those who've just realized there may be one of us from gaining the same sense of support and community that we benefit from? What kind of cruelty will we have to express to stand like nightclub bouncers at the gates of our community? say, No, you can't come in, you don't have a ticket. It would be inhuman. To close the gates on those people who are self identified yet that's exactly what the malcontents we've been talking about wish to do. You can't come into our club until you've jumped through all the hoops that we did. It's not fair, and I will never support it. So what can we do about the situation? How can we as a community remedy for a start off, there's no point hating the gatekeepers, the malcontents, the supremacists and like they're already victims. They're victims of their own self hatred. They hate their autism or they hate that their child is autistic. If we argue with them, if we try to reason with them, if we try to engage in any way, if we express our anger or our vitriol, they'll just use it as ammunition to try and undermine us later. It's not us, they're attacking his public opinion of us so that they get what they want. We're far better off, not engaging. We're far better off blocking them or ignoring them. Don't retweet them or repost what they say to other people. Don't quote them, don't screen, grab them. Don't give them the oxygen of publicity. shut them down, don't engage. Don't give them any ammunition. That's all they want is public attention. When you do come across some writing articles appearing on television or anywhere else in the media. Then write your letters to the editor. What your pieces in the comments pieces. Send your complaint sir, off calm or whatever regulator there is that governs what's in the press or the television. Make your feelings known. And make your own content whether it be posting on social media, writing blogs, if your own. At the end of it. There's a lot more of us than there are of them. All they've got is anger and vitriol and a determination to demolish something that we're trying to build. As for those of us who are self identified, perhaps we should stop saying self diagnosed. Because that word diagnosed is being used against us and against them to undermine the legitimacy of everything that we do. Let's accept them into our communities as most of us already do. Let's allow them to feel part of things. Let's show them the support that we wish we had in the past. Let's work together to start reducing the barriers to diagnosis, a building a future where all of us can live happier lives as equals.

Unknown Speaker 20:38

Okay, I think we'll leave it at that. As always, if you haven't already subscribed to the channel and would like to see more content about autistic life. Click here on the logo on the left, or on the right, these links will take you straight to another video from the channel or you could visit Thank you for watching.

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