THE AUTISM WORLD TOUR SEASON 2 Ep. 1 The Netherlands | ft. Berry Van Der Linden (w/ Dutch Subtitles)

thanks [Music] hi everybody and welcome to the autism World Tour and today we're stopping in the Netherlands with our friend Barry welcome Barry hello Claire it's nice to finally meet you Barry's been uh watching my videos for a few months now and I think he may be the only one who's ever watched all of them so uh gold star for autistic completion yeah we'll start for hyper fixation uh I know like if you don't watch them all have you watched any well and how can you if someone asks what video would you like to see next how can you answer that you can't exactly and the good thing too that you've watched all the videos is that if I miss something like putting it on a playlist you let me know yeah or something in there that shouldn't be in there that doesn't happen awesome and uh we have a lot in common so I think that's why um we've become fast internet friends we both love plants and we've both lived in California and we're both uh big on Yarn yeah this is um season two we're gonna call it of the autism World Tour so the last time around uh last year we went to Arizona Great Britain England and Australia with our good friend Orion of course sorry I was so I started thinking about Orion and then I also wanted to say that he just wrote a book so everyone go check out his book it's launching soon and if you order soon you can get a signed copy so good for him for writing a book what we do on the autism World Tour is I mean the main goal is that there isn't a lot of information out there for people who um want to know what it's like to live on the autism spectrum internationally and especially on YouTube I find it really difficult to find uh stories from people in different countries so we're slowly collecting people's stories so that we under we have a better understanding of what autism awareness and acceptance and diagnosis care looks like in other countries so we'll just go through a few questions and see what you think if that's okay all right yep my first question for you is when did you first learn about autism or what was your introduction to autism well my very first introduction to autism was actually through a group that my dad used to coach my dad's in the Netherlands we have Athletics clubs so it's not school bound like it is in the U.S and my dad was a member of one of those Athletics clubs and he started a special uh special needs group or at the Athletics Club so I've I've known from from when I was a kid or that the autism existed the only thing we didn't see back then even is the spectrum of course because yeah uh high high support people are always going to be the first to be diagnosed with stuff like this unfortunately when did it come to your attention that you might be on the autism spectrum well I've known from uh when I was a little boy that I I was different I never thought it was autism I mean uh when I first went to therapy for the the things I I pulled forth was well it might be a sociopathy or a psychopathy or uh yeah borderline or you know people get um misdiagnosed with a lot of things don't they yeah yeah they do schizophrenia yeah yeah it's all it's it's it's very interesting if you start researching that part of the autism diagnosis it's very interesting to see how it's progressed throughout the years so I guess when question then is uh what is the normal diagnosis process in the Netherlands is it more formal is it a diagnosis that can be like subsidized by the government or do you have to cover it by private insurance like what's the diagnosis process well uh unlike the popular opinion in the United States that no european-based health insurance I do pay health insurance okay it's costing me about 130 bucks a month to have the privilege of being able to go to any hospital or any doctor I want to go to so technically nothing compared to what it costs in California so well yeah I mean my assessment was basically basically uh all I I needed to pay was 350 bucks for it yeah when an assessment in the the us if you go to a private person can start at 2000 and go up from there so uh yeah it's pretty crazy but do you is it more of a you go to your your doctor and ask for it or how does it work yeah you go through your general physician and then the general physician that they usually have somebody at the practice of that General physician that does uh mental health so they'll send you there first that didn't help for me so I insisted that they send me to uh to uh therapy basically the psychologist a psychiatrist or a therapist and and that's how how the diagnosis ball started rolling now did you um insist that you thought it might be autism so you should go to the psychiatrist or was it more like I just need more answers and I want to look at this further oh yeah it's definitely the the answers part I mean I just wanted to know why my life was failing because you know I'm 48 and uh the longest I've ever worked for an employer is three years that there has to be a cause well I made it four years Barry oh there you go see before my big meltdown uh um and sorry did you mention how old were you when you got your diagnosis I got my diagnosis officially last year so at 47. yeah from where I mean I started with this therapist that I'm I have right now uh a couple of years ago and it was kind of clear from the beginning so she just took a little longer for the diagnosis because you know diagnosis pretty much works the same uh over here as it does over there they talk to your family they wanted to talk to my parents but my mom seems to not have remembered anything so I did most of the the remembering for them but yeah but they wanted to talk to more than one person for you yeah yeah they they uh they I they wanted to talk to my mom and dad but my dad doesn't really care for it so you didn't want to cooperate my mom tried filling out the forms as good as she uh she could and then uh the therapist and I just filled in the blanks yeah even my mother has said before like um she just never thought of the the issues that I was having of which there were many like she never thought of it in the context of autism and how could she it wasn't a thing uh so even to ask uh parents that question I think in this generation of late diagnosed autistic people it's not necessarily Fair because they don't even know what they're trying to remember oh no that's correct of course we're uh you know Orion UI we're we're part of a small uh a small percentage of people I think it's like nine percent of autistics that get married so not everybody has a long-term relationship to uh to get that information from uh is it too personal to ask you how um did your spouse react when they found out or realized that you were on the autism spectrum I don't think she really believes it even now because when you've always been high masking and you can pretty much roll with the punches here and there you know as long as I'm going uh into burnout and it's more difficult for a person to see well yeah this person really is at this autistic can you you constantly have to uh bring the trades forward that they know about I have echolalia and we have a parrot in California so that that bird mimics everything that I've ever done so it's not like it's not apparent you know the birthday yeah all autistic people should have a parrot so they could just repeat back at each other yeah yeah having a parent can I ask how long have you been married 18 years now okay I'm at I think I'm at eight years yeah I mean one day one day at a time yeah that's for sure you know just uh especially being married to an autistic person I imagine can be easy so yeah I think there just has to be a lot of patience and understanding on both sides or else it's easy to get offended by someone's Behavior even though they're not trying to offend how do you feel um that your home country historically has treated autism spectrum disorder oh I think they they've treated it like a severe disability so only the only people that ever got diagnosed were the ones where it was obvious that they were autistic because they had a high support need and those support need people yeah they they have to kind of scoot through or they get called gifted in school and now they they're going to a special class because they're gifted so there's a lot of uh misconception but that's also psychology that's done that a little bit I think I mean we're taking stuff out of the DSM and putting stuff back into the DSM and then taking stuff out again it's it's not really uh really easy for the average person to uh to know what's going on let them know let alone a doctor that uh knows about the DSM everything you're saying is so interesting that I keep coming up with a million other questions and I'm trying to just focus on what you're saying like a good interviewer um next question would be then um oh I guess I was going to ask um how do you feel that the treatment of autism has changed in the Netherlands in the recent years do you feel like there's been any cultural shift on how the diagnosis is viewed or how autism is viewed in general recently I don't think we're there I mean the problem with us here the problem with us is you can't really see the disability right so right and that's the biggest problem for people in accepting that hey that guy's autistic but I am too even though I I'm a low support person what's interesting to me is that I don't believe that high masking autistic people are necessarily low support we just appear low support and it becomes an issue for us because when we do need those support when we do have support needs they're denied because people can't see that we need them yeah so I think that's why the um high and low support needs can be problematic because there's obviously people who do have high support needs and they do need um maybe full-time care or um yeah full-time care and that I don't necessarily need that but there are things that I definitely do need that I feel like someone might look at me weird if I asked about it because they are like well why are you asking for it now you've been fine before yeah well that's the biggest problem that's what the the problem I run into I I have a housekeeper he comes in and he uh he helps clean my house once a week and it's it's very hard for people to understand that I need that because if I don't have the guy coming in uh I'll have I I'll have a the counter that you see behind me here that'll be full of dishes and then the rest of the counters will become full of dishes and then other stuff will start becoming messy and uh you know it it's it's something I need but people don't get that I need it or why I would need it yeah I've had a lot of internalized ableism like guilt feelings even hearing from my my own mother she's and she's not being she wasn't trying to be mean at the time but like how come you're always talking about how your house is such a mess or how you can't keep on top of it it's it's a little place it's not that big so like why can't you handle it or why are you having these problems when dot dot dot and I'm like I can't explain it to you before I was diagnosed I just felt overwhelmed all the time but really it was just autism yeah yeah I I want a housekeeper so you can send them my way if you want to put them on the plane I'm sure he doesn't mind flying out there okay why don't you show everyone your mug you're in the mug Club yeah I'm into my club I have to the enamel mug here the other one's in the wash oh I forgot you ordered two yeah I I've got both of them oh there was the first person who ever ordered two it was only it was only like that for a minute but um I I emailed them and I was like you now have the biggest mug collection of Woodshed Theory mugs in the world yeah it was only for a minute though so or you know a few days and then somebody else ordered two but that's so sweet let me check my questions what are acceptable terms around autism in your culture so as far as in the Netherlands do people use terms like ASD or I know in the UK they prefer ASC um autism spectrum condition Asperger's autistics like what what's the the vocabulary it's pretty much ASD over here as well uh the only problem is it's dutch so it's it's actually ass in Dutch okay hilarious yeah so that's pretty funny I thought that was pretty funny uh they also still use Asperger's and they still use high and low functioning but you know with a little bit of expect explanation they don't anymore so that's interesting uh we have to be the ones to push the growth in the right direction because people don't know yeah that's correct but do you feel that people are pretty open to it when you talk to them or are they more like uh whatever everyone's a little on the Spectrum all this crazy oh that's that's that's one thing you hear a lot I know everybody's a little bit on the Spectrum you know how everybody always that's not an Autism trade it's a trade it as everybody has right isn't it funny when you hear that from people who are obviously autistic but you can't tell them that when they're like everyone's like that and they're like um maybe maybe you might be on the Spectrum if you think everyone's like that yeah yeah well that's the thing right they don't know yet so but it's it's pretty funny to see that uh that you know once you explain uh to people why we don't want Aspergers anymore or why we don't want high and low functioning anymore but we now speaking high and low support I understand it then they they can they can use it before you know I'm I'm not a tick tock guy so I don't like imposing speech on people I educating them and then getting them to use the speech yeah that's probably the best thing to do as far as uh you should educate first and then there's understanding as opposed to just like don't say that doesn't want would you say that the Netherlands has a strong push now for an earlier diagnosis for people or um more of a push for diagnosis for women um can you just kind of speak to that as far as like where is the Netherlands at as far as like recognizing autism although the first psychiatrist I ever went to ask me why I needed a diagnosis because what's the diagnosis going to get you you there isn't anything for your uh for people who are diagnosed in a later age so what what do you need to diagnosis for yeah so and that that was a therapist telling me that so um it's it's hard for people to understand uh once you've lived with it for over four years why do you still need to know why is it important to figure out if uh if you are on the Spectrum or not and they don't get that I want to know because now I can do stuff in my life to make sure that the meltdowns don't happen as often or burn out or Etc it literally changes everything and it's so funny because I also got that from people where it was like well now that you have it I mean just keep you're the same person you were before and I was like no I'm not like I I'll look at your sweet cat um uh no I'm not the same person I was before because everything I was doing before was this mask I was trying to keep up for you and I'm not willing to do it anymore I can't physically continue or else I'm just going to keep going through this um the cycle of starting a new life keeping it up for as long as I could burn out trash down in flames explosion and start over start over after a year of like exhaustion and then again and I just don't want to keep doing it you know every autistic adult that I know that has been late diagnosed has you know EV has a story of all of the lives that they lived before before they were diagnosed and then once you're diagnosed you're stuck with that question of who am I yeah well it's definitely something I'd like to find out I mean you can once you've been uh masking for so long and it's it's mostly Auto masking it just happens whether you like it or not I've just started asking myself I think um just be I mean it's cliche to talk about like um thoughtfulness and uh mindfulness but I just try to ask myself like am I doing this like what are my motivations and taking a step back but it's hard to do that when you've just been playing a person for so long um getting back to you know what do I like to wear and what do I like to do and what makes me happy is is a big process yeah that definitely is I mean uh hell people people do uh adjust anything in their lives I mean people people have different music tastes because they're masking to fit into some sort of a group that's so true um it's interesting I've never even thought about that before but it's like uh I meet somebody and they'd be like this is my favorite music and then I just start listening to that music even if I hated it I would just listen to it until I could tolerate it yeah because that I wanted to fit in in that way yeah yeah that's very recognizable I mean it's it's it seems to be a normal thing that we do as autistics to uh try to fit in is uh even even adapted to stuff that we don't really like and yeah you're just kind of like um this idea of just um wanting so badly to understand neurotypical people and feel accepted by them but you don't realize that that there's never going to be that kind of connection the one that you're looking for because you're not you don't have the same neural Pathways yeah the same so if you can't the same then it needs to be in a different way exactly and that's why now I feel like I can have more friends right because um or more neurotypical friends because I understand that I need to adjust my behavior they adjust for me and I adjust from there for them and we meet kind of in the middle yeah uh let's see next question is a big one um what kind of early interventions do they use in the Netherlands um for autistic children well there's there's definitely a lot of group homes in the Netherlands I think that's that's true if you talk about that I haven't heard anything nobody has told me that yet no no there's there's a lot of group homes so there's uh there's homes that they can do assisted living and then there's homes where they can live in groups of four and pretty much live on their own but have assistance when they need it is that for children or for young adults that's for children and for young adults so the the children will come into the group home and then get to learn the basic skills to uh one day move out on their own oh wow so do they they take I don't want to say take but parents put their children into their so they're not living at home with their parents at all not necessarily no oh I mean that's a big difference because I think in the states people would not want to be separated from their children um even if it was therapeutic they'd want to do the therapy at home so the thought like how young would somebody be to be in a group home like that oh exactly I mean it it also depends on the on the support again I mean if they're high organic cookie from a very early age that they're in the group because the parents can't just take care of the kid themselves so yeah I mean I've heard of supportive living before but never for I guess never for autism particular I've seen people who have high support needs who are in group homes but I never thought about it as like an Autism thing yeah yeah well the the nice thing about it is that they will learn at some point to to be by themselves or in a smaller group so they get some of their uh Independence which which is something they can't get if they're uh gee I mean it's so funny because I always wanted to be independent growing up but now if if you gave me the chance to move back in with my parents if I wasn't married uh I'd hang out with them yeah you know my mom is great because she helps me keep things clean so uh okay yeah and so do you find that um like it's something that children are diagnosed earlier now in the Netherlands and they were like for example when when you were a kid or are they like is it more just the same where lots of kids are missed or they don't diagnose girls at all like is it what what's it like in that there's they're still gonna they're still gonna miss some uh people that are just low support and you know you wouldn't know unless uh you you lived with him for a while my mom always said that the T because the teachers were always like saying how great of a kid I was but I would come home and have meltdowns every day yeah well I don't know if it was every day but a lot of days yeah yeah I I had a lot of those days as well luckily my mother doesn't remember anything anymore so okay she's like you were fine yeah so yeah but but when I was growing up a diagnosis for someone like us was near impossible I mean they they wouldn't even think about it yeah I mean um in the states they didn't diagnose women until 2012 I think so it would have been impossible um you know I look back over my life and the paperwork and a lot of time was spent when I was you know kindergarten age like what what's going on with this girl um but autism never came up and I was kind of just given support for the first few years and then you know I was always in mainstream classes and you know didn't have any support after that so I had no no idea and it's interesting to say that your um Dad was you know coaching special needs groups and you guys had no idea no no well that that shows that even someone that works with uh with children on the Spectrum uh you know a lot of days of the week can't even pick it out in his own son you know the the the tick tock generation would like us all to hate our parents for not noticing sooner but I'm you know I'm I'm a little older and I always go you you know they did their best yeah I feel like my parents said everything that they could with the information that they had they weren't trying you know my mom would put me in therapy if I asked or go to the doctor if I asked and always trying to support me and put me in tutoring to keep me you know up to date with all the other kids um so it's hard because it's easy to say like it's your fault you should have noticed but how do you I think everyone was aware that I was different my dad always you know my dad always turns to me uh jokingly and says there's something wrong with you uh but what is it uh we did not know and I'm so grateful to know now my mom when I was younger was always busy with flashcards and stuff to try to teach me math going to find out I just didn't have an interest in math I didn't care yeah but you know she took the time to take the flash cards out and try to get those time tables just stumped into my brain yeah I always stroke math was the only thing where I wasn't I didn't Excel so my mom would still put me in tutoring but really A lot of it was um time because like test taking and I needed to just have more time to think it through and like write everything out and feel comfortable and I just don't do well under like pressure like that where it's like you've got 30 minutes go show me that you know this yeah that's not gonna happen no it'll show that I know nothing but I really know it so has autism become part of any pop culture in the Netherlands I.E television programs autistic characters in media Etc so for example like the US and Australia have love on the Spectrum now or um Korea put out you know uh uh exceptional attorney Wu and other programs like that is there anything like that in the Netherlands well I don't really watch Regular Network television to be honest but not that I know of I don't really know of any program that has specifically uh someone with autism in it there must be you mean there's there's a lot of programs on the television with special needs people in it so I'm sure autism is covered in there somewhere um you have like any um openly autistic famous people or musicians or anything that you know of we have a few Comics that are uh well maybe not autistic but definitely on the add Spectrum so neurodiverse otherwise diverse otherwise narrative hers so we we have those guys but I I can't think of a famous person who's come out and said well I am actually autistic that's I don't think it's really something that famous people do anyways we've been told that Elon Musk is on the Spectrum but I I've never heard Elon Musk himself say that he's on a spectrum if I ever bump into him I'll ask I promise so it's interesting because I've talked about this on my channel before about Fame famous people quote unquote famous people and saying that they're autistic a lot of people tend to see somebody that they feel like they know but they don't actually know and kind of give them the you're probably autistic um and I've heard that even from Comics who um say that they were you know people ran up to them after the show to say hey and you know I don't know if that's the best way to do it maybe send an email or something yeah um okay next question oh okay this is a great one and you said that you were gonna look some up so what resources are available for people who are on the Spectrum in the Netherlands is there any particular organization that you know of that people should check out as a resource if they feel um or if they know they're on the Spectrum and maybe want Community or support or if they feel like they might be on the Spectrum yeah there is a couple of forums and then discussion forums Discord servers and stuff like that and most of those can be found on autism index.net so I'll send you the link to the oh good yeah I'm just writing it down autism index and what's the um it's not.com it's not not to know yeah NL okay interesting hmm that's that's a website that pretty much has everything you would need to Facebook groups Discord servers there's some people still using forums gosh I love a good forum yeah back in the early Arts I mean catch me on the forums yeah like that's how you find information uh several years ago you know if you needed to know somebody or something or you had a question you had to like go deep in the into the forums to find the answer yeah most Forum Searchers don't work either so you need to use Google for their search but yeah so funny I haven't been on a forum in forever but about a decade ago that's where I'd look to get answers now do you you use personally use any of those uh resources that you have found on I'm active on one of the forums on there and you know there's more Forums on there but you know how many websites do you need to be a member off to yeah that's true so it's it's uh I'm usually on insider.net which is uh one of the the Dutch forums oh cool I'm gonna write that down yeah so that that's pretty uh pretty fun to talk to people that it's not a very active Forum I mean we're artistic so we both when we remember yeah but uh it's definitely where people hang out it's where people get the support especially uh people who are just diagnosed and need to know more okay is there um do you feel like there is a resource where people can find a doctor to speak to um in the Netherlands or is it more word of mouth no that's that's more word of mouth I don't think that there's probably autism centers in the Netherlands only as an adult on the Spectrum I'm never going to see the inside of one I know there aren't any services for me there so yeah that was something that came up in my diagnosis as well that the psychiatrist said I cannot diagnose you through our program we only diagnose to 23 so she sent me some she sent me kind of some information on where I could look to find to get an older diagnosis even when I was diagnosed I remember talking to the doctor and saying like well what now and they didn't really have an answer they were like well I mean just keep working on your OCD stuff and but there there isn't as many resources for adults at all and if any we have to build it up as our own community of autistic people to kind of share information and get help from each other because there isn't a formal way to get help as an adult yeah because I don't know if you know this but after you turn 10 the autism disappears yeah magically poof I used to be but you know what that's so interesting because I don't know if you've ever heard this or talk to people but they'll say oh I used to be autistic and uh you know when I was a kid I was autistic and they don't realize that it doesn't it's not something that goes away they've just been trained out of all of their autistic behaviors yeah which isn't always necessarily a bad thing right you're learning to um cope and deal with the world but then you like don't realize that you've just been trained to stuff it all inside of you forever yeah and then I ever come out in a meltdown exactly and then they're like wow where'd that come from yeah well it was over there but this is waiting waiting to show it that I have for you and I I this time has gone by so fast so I'm so excited because I really enjoyed our conversation um is as far as the future of the autistic community in the Netherlands like what are your hopes where do you see it going where do you hope to see it what what's your hope for the future of autism in the Netherlands oh I I hope that at some point Society will see that even no matter where you fall on the Spectrum scale everybody needs support I understand there is a treatment for us you know there isn't there isn't a way to make us better because most of the stuff we've learned ourselves already so I understand that but I'd like to see maybe uh for people that like going to group I don't like going to group at all but some group therapy would be nice yeah resources yes just figuring out together what uh what the solution to a problem can be in instead of having to do that on your own all the time and I I don't know if you feel about feel this way too but I would just like some what's the best way to put it I guess not it doesn't even have to be like full-on acceptance from people but just maybe acceptance to a level where it's when I tell you I'm autistic and I have some support needs and I might need you to support me at some time I just want somebody to be like okay yeah it'd be nicer if they went okay not well there really isn't anything out there so right like oh you don't seem that way or there's nothing really we could do and you seem to be coping fine yeah or the worst one you're so well adjusted yeah thanks yeah like I said well adjusted to what compared to what I don't know well I'm I'm just so grateful that you volunteered to be on uh the world tour if you're watching this and hopefully Barry you can say you can encourage people right now if you're watching this and you're from a country that we have not visited yet please send me an email at woodshedtheory gmail.com we would love to have you on the autism World Tour because I think that there's a stigma that we don't exist all over the world and we really do yeah no that's that's true you know I'd like to hear from Italy for instance I know we have an Italian Community member that maybe uh wanted to do something so that'd be interesting because it's it's interesting to compare European countries also other like I'd love to hear um and from Africa um those are uh at least you know it's probably that they exist but just not in English or um it would be so nice to hear from other people in other countries where it's completely different you know and that's why I was excited about you know Australia and other countries because it's it's um it's interesting to hear where we have there are so many differences but also it's exactly the same everywhere so it just feels better to know that we're not alone and but that we all have this amazing online community where we can come together and like learn about ourselves and not be and not feel different yeah yeah that's uh well spoken I don't have anything to add to that one in that case I'll go ahead and say goodbye and you know thank you for being on the autism World Tour Barry you did a great job and I'm just so grateful you agreed to come on all right well I I hope more community members want to come on all right [Music] [Applause] [Music]

Channel: Woodshed Theory

Views: 850

Keywords: autism, asd, autistic, interview, neurodivergent

Id: ezsvcod-m3k

Length: 40min 6sec (2406 seconds)

Published: Wed Jul 12 2023