"Dear Sam, I've been down the rabbit hole I've watched all your videos on autism. I've watched all THE videos on autism. Read all the articles and books I can find, and I really relate and I really think that I might be autistic." "What do I do now? How do I go about getting assessed for autism?" This is a question that I get asked probably several times a week on my Instagram; shameless plug please go follow me. And I wish I could help everybody individually, It's just too much for me to reply, but then I thought "hey you remember that YouTube channel that you have? you could make a video on there, genius" How many months did it take for me to figure that one out? But I get a lot of messages Including from teenagers and my heart sort of breaks a bit because so many people say "I know I'm autistic But I'm terrified of talking to my parents about it, or I'm worried I won't be believed" which I relate to, because let me tell you at the age of 32 I was so nervous to tell my parents, that I drank a bottle of wine and then cried on my mother's lap for an hour... Because she said the word autism in the middle of an unrelated conversation and I could no longer bear keeping my wild secrets within me. Don't do that. Do this: Hi everyone, if you're new to my channel I'm Sam and I make videos about autism and neurodiversity every week here on YouTube if you think you might like that kind of thing, click the like, subscribe, whatever engagement. So almost all the people who get in touch me with this kind of question have already done quite a lot of research on autism. And I don't just mean Google search. "That's it. I'm autistic." and maybe you've binge watched all my videos and all the other videos and researched online and read journal articles and all of this stuff and you've come to the conclusion that, yes, you finally have a label for everything that you've experienced in your life. There's a name for it, and suddenly when you're done with that very intense and very exciting phase- the research phase- the realization sort of hits you that this is something that might actually affect your life on a wider level. This isn't just something that you can sit there and think "yes, I'm probably autistic" but it has had an impact on your life and the way that you interact with the people around you and the direction that your life is potentially going. And this leap from being very comfortable doing your own research and kind of self identifying secretly is- it's a scary leap to take to jump to the "and now I'm going to do something about it" phase which is, it's just not quite as comforting as the research phase because it involves other people mainly. Research for me is very comforting and other people for me are unpredictable. And I think that's possibly true for a lot of autistic people. So I, I totally understand why you might be feeling uncomfortable at this stage. The first thing I did during my research stage was to make a big document. Every time I came across a memory, a trait, or habit that I'd suppressed or hidden from the world, it went into this document and I think it came out at around six pages. But I know a lot of people who have significantly longer documents, so don't feel bad if you've got 30 pages. That's fine, because this document is for you more than anyone else. Although my diagnostician was reasonably impressed and did include it in my report. That's my little brag for the day. During this stage where you're compiling all your traits together, that might be a good time to confide in your most trusted people, maybe a partner, siblings, or your parents. The problem with this is that even someone you trust, and someone who really cares deeply about you, might not actually know anything about autism. And they might therefore dismiss you based on their own ignorance not on how autistic you actually might be. And that's just a real risk that you face. It doesn't mean that they don't care or that they'll never understand, but a lot of people just don't know about autism. So it's good at this point to involve them in your research to help them understand what you see in yourself and what you're supposed to be comparing it to, because chances are when they know what they're actually looking for they'll see it too if they know you well. And the biggest problem is not knowing what autism actually looks like in the first place or having kind of like stereotypical ideas about it. So you have to be prepared for them not to understand. But good people can and will make the effort, and this is especially true for parents. Not all, but most- I think most parents want their child to be happy and fulfilled no matter how old they are. But there are barriers, obviously stigma, something about labels, "Why do you want to label yourself" having to admit that THEY might not be as normal as they thought, perhaps. These are significant barriers, but they can be overcome. They can, and if you think "well I don't have anyone I can trust", you don't need to confide in anyone. You don't need to. The next stage is deciding if you want or need an official diagnosis. Perhaps you need or want accommodations at university or um in the workplace and the only way to get that is with an official diagnosis. I have done a video on this actually, so please check out my video on the subject of whether or not an adult diagnosis is kind of worth getting. And if you're a teenager that my personal opinion is it's almost always worth it, but you definitely need to involve your parents in that, instead of me, a strange internet lady. If you don't trust your parents and you're a teenager, then I would advise talking to someone at school about it maybe a guidance counselor or a trusted adult there. So at this point for everyone really diving into the ND or neurodivergent community can be really helpful There's pretty much groups on every platform out there, whether it's Facebook, reddit, twitter, or discord. There's a really good subreddit called "autism translated." There are several other quite good subreddits as well. You can follow the hashtag #actuallyautistic and #allautistics on Twitter and Instagram if you just want to see what other people are saying about autism. Because sometimes it's good to actually just follow a few autistic people online and see how much you relate to their personal experiences after you've done the hard research stuff. And don't feel discouraged if you do join a group or community and you think "well this doesn't really feel like me" because autistic people vary so much, and communities and groups also vary a lot. So just try a few to see which one seems to fit, different kinds of autistic people congregate in different ways. You can like techno music and going to clubs and still be a hundred percent autistic. I'm sure there's a group out there of autistics who enjoy clubbing. I'm sure there is. You just need to find your people. So now you've come to the point where you'd think "yes, I do want to pursue a diagnosis And then what what do I do now?" Some people- actually quite a lot of people- approach it with their therapists. Now therapists are actually trained differently from kind of psychologists. Therapists might typically have a counseling diploma or degree maybe but it's separate from the field of psychology itself. That's certainly true in the UK. That's not to say that a psychologist couldn't also be a counsellor and sort of vice versa, but therapists as I understand the way it's said don't typically have the power to make diagnoses, and I don't always think it's a great idea to discuss it with your therapist because They are not trained in spotting autism and unless they're a specialist they've got no obligation really to be up-to-date in their knowledge about autism specifically. So I think I hear from a lot of people who've said to their therapist, they say well my therapist just thinks I'm quirky or neurotic or I overthink things and it's like, yeah, they probably see a lot of undiagnosed autistic people but You can discuss it. But if they dismiss you that doesn't necessarily mean anything because they're not trained in autism. Figuring out the options for you personally is gonna depend on your geographical area, in your country, your location within that country, there's so many different factors. I cannot possibly research and say, well you live in this part of You know Well, you live in this part of Russia. Therefore, you should go and find this person. I don't have the resources to do that. But in general the absolute best starting point is with your GP or primary care physician. They are the person who will put you in touch with the right people. They are the gatekeepers, for better or for worse. So make an appointment with them to discuss the fact that you think you might be autistic. How on earth do you communicate this? I know, it's like, it's really difficult. You're gonna have to condense however many pages of your big document of your life experience into something that is a little bit easier to digest because doctors are busy. Appointments are typically 10 minutes and you want to make it as easy and clear for them and for you as possible. So what I've actually done for you guys is I've made a template that is based on the diagnostic criteria as laid out in the DSM. The DSM isn't perfect by any means I have done a video on that explaining the criteria, which I'll also link below. But it is a really good structural starting point to organize your thoughts and organize your traits, and honestly, I've been feeling kind of bad about the number of doctors I assume who have had to put up with this whole "I saw the video on the internet from this woman for Yo Samedy Sam and I think I might be autistic" so I thought I would do doctors a favor and make a life easier for everyone and give you a way to structure that conversation, because it's very overwhelming when you sit there and you say "I think I might be autistic" and there's a long pause. So having a document where you can organize these reasons why, is, would have been very helpful for me I think I wrote down three bullet points and just got scared. I was lucky with my doctor. A lot of people aren't. So the way you use the document, I've given you the template with different categories and you fill in the traits that correspond to each category. It's kind of simple But it's just a way to organize your thoughts from the GP the process for referral can really vary a lot. I was diagnosed in the Netherlands and I was referred directly to a psychologist who specialized in Diagnostics. But my GP actually had to look up the process. She sent me to different wrong places who didn't diagnose adults or who didn't diagnose at all. She sent me in a few different directions before we worked out who was actually able to diagnose me. So your GP may not actually know where to send you, and you might want to look at joining more localized autism groups Especially on Facebook there are groups for a lot of different locations. Because somebody in that might be able to say "well I'm in this area and I was diagnosed here" So then you could go back to your GP and say "I think this these people might be able to help", now of course, you have to be prepared if your GP to say no, because they have stereotypical ideas of how autism presents or old-fashioned ideas. So be prepared to educate them a little bit without info dumping if possible, or ask for a second opinion. You can talk about how masking is specifically mentioned in the newest version of the DSM You could print out the DSM criteria as well that might be helpful if they, if they really don't know anything about autism, you could talk about how many people are now being diagnosed later in life because of this, and because they've recognized that autistic people can and do mask. If you're facing a struggle getting that referral please bring a trusted person with you to the appointment. Even if they don't necessarily believe you, bring someone who can fight your corner anyway, someone who knows you and knows when you get overwhelmed and can step in at that point, maybe. Especially if you have a tendency to lose your words when you get really stressed and the other problem that you might face is that diagnostic options are simply very limited, and you might be forced to go private if you want to diagnosis. This can cost a significant amount. It can cost thousands actually, and this is a real problem because it's so different in different geographical areas. There are so many barriers in place and some places might not even diagnose adults at all. And this is the reason why so many people go to undiagnosed and why self diagnosis has to be valid. Until we make the system more fair, but basically from your GP, you need to find a way to get referred to someone who can make the diagnosis, and a therapist generally can't do it for you. And then comes the big weight. This can be a very hard time I felt very restless during the four months that I had to wait and it could be a couple of months But it could also be several years before you get that appointment. So what can you do during this time? Well, you can take the time to do more research maybe in a more relaxed and less frantic way. You can take the time to read books by autistic authors make autistic friends and know that you know who you are deep down, even if other people misunderstand or misrepresent you. But hopefully this video has clarified the steps and the process up to your diagnosis or assessment, and made it seem a little less scary and overwhelming. Because I know it's scary and it feels like complete unknown. And I've been there and know that I understand your fears and pain and uncertainty. The imposter syndrome that FYI doesn't go away after getting your diagnosis- the stigma both external and internal. These are all real and painful but you can get through them with the right people and the right communities around you. Finally if you're looking for a really supportive community to explore your neurodiversity with, or as we like to call it if you're on the "suspectrum", I do have a discord server full of amazing people, which you can join for a small monthly fee. It helps support this channel, and as well as access to the discord, you can get some exclusive content, giveaways, that sort of thing. So if you think you might like to join that, I put all the information down in the description box below. If you like this video or found it helpful please give it a big thumbs up because it helps to feed the algorithm and it indirectly helps to feed my two cats storm and Lily who are cute. Consider subscribing for more autism content and I'll see you next time. Bye
