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Low Support Needs Autism | The Unique Challenges
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What is behind the 'profound Autism' backlash towards the ASD-1 adult community? What unique challenges face low support needs Autistic adults?
In this episode of the Thoughty Auti Podcast, Thomas Henley talks to @NeurodiverJENNt about low support needs autism, the unique challenges it presents, and the conflict between the autistic adult and parenting spheres.
Thomas’s Links: https://linktr.ee/thomashenleyUK
@NeurodiverJENNt - https://www.youtube.com/@NeurodiverJENNt
Chapters:
00:00 - 05:15 Introduction
05:15 - 15:36 Jenns Diagnosis Journey
15:36 - 32:30 Unique Challenges Of ASD-1
32:30 - 44:37 Autistic Masking
44:37 - 01:04:54 ASD-1 Adults VS Autism Parents
01:04:54 - 01:08:49 Jenns Takeaways
In this live podcast episode, Thomas Henley and NeurodiverJENNt discuss lower support needs autism. They talk about their experiences with caffeine and how it affects their ADHD. They also discuss looking younger than their age and the challenges it can bring. The conversation touches on topics such as live streaming, the pressure of being on camera, and the trial and error process of creating content on YouTube.
Thomas introduces the episode and explains why they chose to focus on lower support needs autism. They also mention a previous episode about autism and sleep with Dr. Megan Neff. In this part of the conversation, NeurodiverJENNt and Thomas Henley discuss the challenges of communication and social interaction for autistic individuals, particularly those with lower support needs. They talk about the difficulty of initiating and reciprocating social interaction, the energy and mental effort required to respond to messages, and the feeling of being stuck in the middle and not fitting in anywhere. They also touch on the impact of a late diagnosis and the process of self-discovery. The conversation then shifts to the topic of masking and its effects on well-being, self-perception, and social interactions.
In this final part of the conversation, Thomas and NeurodiverJENNt discuss the challenges of unmasking and the perception that unmasking is an act or performance. They also address the controversy between autistic adults and autism parent advocates, emphasizing the need for compassion and understanding between the two groups. They highlight the importance of listening to the experiences of lower support needs autistic adults and dispel the misconception that autism has a specific look or set of traits. They conclude by encouraging patience, kindness, and collaboration in advocating for the needs of all autistic individuals.
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Transcript
Introduction to Lower Support Needs Autism
00:00:07
Speaker
Good day, and welcome back to the 4TOT podcast with your host, Mr. Zomasanli, of course. Today, we are going to be talking about lower support needs autism. Now, you may be thinking to yourself, okay, Thomas, why are we having this particular subject, like pretty much most of the content you make is about?
00:00:28
Speaker
sort of lower support needs autistic
Unique Challenges for Lower Support Needs
00:00:31
Speaker
adults. I think it would be good to try and think of some unique difficulties, unique differences that people like myself and our guests might experience as opposed to people who have much higher support needs. Yes, where am I going with this?
00:00:49
Speaker
I mean, I'm impressed. That was pretty good. In the last podcast episode, we talked to Dr. Meganeff all about autism and sleep. It was a very informative one, so I highly recommend going and checking that one out later. And of course, today, for the third time, actually, we're doing a live podcast. So if you're listening to this on any of the platforms and you want to join in on the live or you want to watch some of the live recordings from the past,
00:01:18
Speaker
You can have it head over to YouTube, and if you want to see the prior recordings, you can peruse the members section if you would like to do that and you want to support me. Anyway, enough rambling. How are you doing today, narrative urgent? I'm great. I'm glad that we finally made this happen. It's been like a month in the making, two months in the making. I don't know how long have we been going back and forth, like two autistic people trying to set this up.
00:01:46
Speaker
you reached out and then I gave it the good old five to 10 business days to respond and then you would return the favor and take five to 10 business days to respond to me.
Communication and Social Interaction Difficulties
00:02:01
Speaker
Yeah, it's communication is not my strong, strong suit. And, you know, I hold my hats up to to anybody who can like properly organize like things like this, because it's just doing it on top of like everything else. And like also also taking into account sort of messaging friends and family and stuff like that. It can be a lot sometimes, you know,
00:02:31
Speaker
It is a lot. I talk about that in one of my very first videos where I talk about the social deficits. And one of the things I struggle with the most, you know, because we talk about difficulty initiating and reciprocating social interaction as an autistic person. And I think it's very easy to picture what that's like for a child. But then, you know, what does that look like when you're an adult? Well, for me personally, that means
00:02:59
Speaker
I really have difficulty responding to text messages. And when people reach out to me and reciprocating there, and it's not that I don't have the time, it's that I don't have the energy, you know, because it only takes a few seconds to respond to a message. But for me, it's a huge emotional mental task to respond to text messages and to respond to, you know, Instagram messages.
00:03:25
Speaker
It almost kind of feels like this heavy burden sitting in your inbox. But anyways, we we made it happen. Here we are two months in the making. I think it's I kind of describe it as like watering the plant, like particularly when it when it comes to like friends and stuff like that, because a lot of people have their own sort of requirements or preferences when it comes to communication.
00:03:51
Speaker
and there's been a few times where I've had friends, made friends with somebody, or like even in the context of dating to a certain degree and my texting is like maybe during like a reply during the same day or like maybe the next day
00:04:12
Speaker
because the pressure, I think it's definitely due to my focus style. I like to be focused in on something that I'm doing.
Creating Content on Autism and ADHD
00:04:23
Speaker
Throughout the day, I've got a routine that I'm going through and stepping away to do something else and text people, even if it's just for a little bit, it kind of pulls me out of that focus style a little bit, kind of dysregulates me a bit.
00:04:38
Speaker
Yeah, and then you open up the floodgates for them to text you back and then when does it end too? Yeah, it's not like it's a one and done job. It's a constant stream of... Let me get back to my special interest. Oh my god.
00:04:58
Speaker
Well, I'm seeing a lot in the chat that a lot of people have seen your work already on YouTube, but I would really like to ask for about anybody who hasn't seen you and the kind of work that you've done. Who is neurodivergent? How do I say it? How do you want me to say that? That's how people normally say it. What kind of content do you create as well?
00:05:27
Speaker
So my my channel is mainly autism and ADHD content because I have the dual diagnosis, which is very common. I think estimates are sitting at 50 to 80 percent of people diagnosed with autism also have the comorbidity of ADHD. And so there's a lot of channels out there that focus on autism.
00:05:57
Speaker
specifically, but not as many that I've seen that kind of hone in on autism and ADHD. We call ourselves ADHD-ers, which is kind of shorthand for the two coming together. And I've felt different my whole entire life. I mean, I just can't even begin to really
00:06:26
Speaker
express how different I've felt my whole life, but I just never knew why. And then I had a son in 2012 and my husband and I always knew that he was a little bit different.
Signs and Hereditary Nature of Autism
00:06:41
Speaker
He would line up his toys and he didn't really play imaginatively with his toys. I've actually got pictures of him lining up like his Crayolas
00:06:54
Speaker
he would parallel play with other children instead of playing with them. And he had a lot of what I now know to be stems and mannerisms with his hands and the hand flapping and stuff like that. And it wasn't until I think, and in kindergarten, his teacher was like, we're a little bit concerned. Here are some of our concerns.
00:07:22
Speaker
But it wasn't until he was in first grade that his teacher actually pulled us aside and asked him if we'd ever had him evaluated for autism. And, you know, just to be like very- What kind of age was that? Uh, so he would have been about seven years old, I believe in first grade. Um, and you know, when she- Oh, same age as me. Wow. That's when you were diagnosed that early. I was diagnosed at 10. Oh my goodness. Wow.
00:07:49
Speaker
Yeah, so that's, you know, and obviously it's diagnosed much more in males and specifically, you know, white males. And so my son falls in that category. And but I do remember thinking when she asked me that I thought that she was calling my son stupid.
00:08:11
Speaker
because I knew nothing about autism at the time. And my husband was somewhat offended too because he was like, this is going to follow him into college and stuff like that. Long story short, we researched it. We began to understand it more. This is just how little I knew about it. And he got his official diagnosis. And then one day my husband was telling me,
00:08:41
Speaker
bless his heart, he started researching the heck out of autism to try to understand our son and to be a good father to our son. And he found out that it was hereditary. And he was telling me that a lot of the research says that it's hereditary. And it was just like the light bulb went off. The world came crashing down. I was like, what are you talking about? You know, and it was at that moment that I began researching it for myself.
00:09:11
Speaker
because I was like, maybe that's what's been going on with me my whole life. So anyways, I was previously diagnosed with ADHD and then thought that I was misdiagnosed with ADHD, went in to seek a professional diagnosis for autism, walked out with the diagnosis of both autism and ADHD, which I didn't even know was possible. But once I began to research it, it explained my whole entire life and every little quirk and strange feeling I've had
00:09:41
Speaker
I started watching other YouTubers and was like, holy crap, there's other people out there like me. I thought I was the only one. And so in order to process my diagnosis and to kind of like share my story, I decided to do a YouTube channel and I put my first video out there actually in April of last year.
00:10:03
Speaker
Um, didn't even film it correctly. I filmed it like vertically instead of horizontally. Um, and I've just kind of been doing, but I was like, you know what? No, we're just going to, we're going to publish it, but I've been doing that ever since. So that was, that's kind of my story as I've been enjoying, um, researching and, you know, being a part of this community and putting YouTube videos out there whenever I have time.
00:10:31
Speaker
It's interesting that you, thank you for sharing that, it's interesting that you were saying about how when you say your son's teachers sort of told you and your husband about autism and stuff and it was kind of like taken as like an insult, I think.
00:10:51
Speaker
That tends to be the reaction of a lot of people, I think, when I was talking to my mum about my autism diagnosis, you know, the same sort of thoughts went on in both of my parents' heads as well. It was kind of like, my God, is this... I mean, we didn't quite get to the hereditary stage. I think that's one thing that's been... hasn't been delved into too much by my parents, but
00:11:19
Speaker
Yeah, I mean, they were worried that I was going to have a label that was going to sort of stop me from progressing. And so they like pulled off the diagnosis and eventually they went for it and they kind of told me that they phrased it in a way of it being like a difference and something that, you know, I'm going to have some struggles in life and I'm also going to have some things that I'm good at.
Need for Better Autism Education
00:11:43
Speaker
And the way that my brain works is a bit different and
00:11:46
Speaker
I imagine I remember even at that very, very young age that it was quite impactful on me in what I experienced. I didn't, you know, I already could tell that there was something different about myself even at that young age. But yeah, it's an interesting one. There definitely needs to be more.
00:12:07
Speaker
like education around autism, because the reaction of, you know, taking it as a kind of like an insult because of the stigma and stuff that's around it, I think, is something that I've experienced too with these people. Yeah. And we have very different stories because you've kind of grown up knowing this fact about yourself. And I was late diagnosed looking back at my life and
00:12:36
Speaker
It's just like watching Sixth Sense for the second time and picking up all the things that you missed along the way. Second Teenage Hood. Yeah. Just looking back and being like, oh, well, that explained that. That explained that. That's why that was that way. I give so much grace to people who didn't understand and currently don't understand because I was right there.
00:13:06
Speaker
Yeah, I totally extend grace to people who don't get it because that was me, you know? Totally, totally. Like, I think having a degree of, like, patience and understanding, like, specifically when it comes to, like, the kind of socio-political world of autism, like, there's a lot of preferences that people have around language and the way that you talk about autism and
00:13:35
Speaker
I think some some people can be a bit like bitey towards other people but I think it's always worth to extend some some level of patience because a lot of people are not it's usually a result of ignorance and usually it's not
00:13:54
Speaker
sort of willful ignorance. It's just a result of just not coming across it, not having the means or the the the the ignition to go and learn a bit more about it. So I really I really admire that about you. That's that's that's also you know something that I feel we should have more of.
00:14:15
Speaker
Well, I always try to say, you know, one of my favorite sayings is don't attribute to malice what might be attributable to ignorance. And I think that that's just what a lot of people are dealing with. But you're, you're right. And you know, I think that the terminology piece was kind of a great segue even into kind of how we talk about autism in, you know, our own community. And I do think that
00:14:45
Speaker
You know, because you, you have like the so-called autism moms and you know, you've got the later diagnosed adults and you've got like high support needs and lower support needs. And while this feels like a topic that's been done a lot of times before, I would venture to say that, um, I feel like there's actually a lot of nuance in, you know,
00:15:12
Speaker
what we call lower support needs adults because a lot of times people think that that means you have like no needs, you know, and that is the keywords lower. It's not non. It's not low. It's it's lower. Correct. Yes. Lower.
Societal Perceptions and Executive Functioning Challenges
00:15:32
Speaker
Well, yes, I think that is a good segue. I think it would be good for us to perhaps talk about some of the more unique challenges that lower support needs individuals might face because
00:15:47
Speaker
Autism has been split into a lot of different things. I think one of the more recent updates to the DSM has sort of compiled all of the floating diagnosis into one, ASD 1, 2 and 3, based on the strength of traits that someone displays and also their functionality, what kind of support they need.
00:16:11
Speaker
There are many things that higher support need individuals face that perhaps myself and you may not, or maybe not to a certain extent, but we are of course talking today about the unique challenges. So what do you think, if we could have a little bit of dialogue around it, what kind of unique challenges do you think exist primarily for those who are lower support needs?
00:16:38
Speaker
lower support needs. Oh, yeah, duh. So my brain processed that as higher support needs. Anyways, so I think one of the biggest issues that I struggle with personally is that I seem normal enough, and I say normal in air quotes, that people don't think that I have any needs, but I'm still
00:17:03
Speaker
uncanny valley enough and don't quite fit in anywhere and and so it's just like I'm I constantly feel stuck in the middle like I don't belong anywhere because people can always tell that there's something off about me and I definitely struggle in the social communication and interaction category but
00:17:26
Speaker
you know, if you are a higher support needs individual, then people are automatically going to recognize why you are, you know, the way that you are, why you act a certain way, because there's an explanation for it. But when you are, you know, and I know that people don't like using functioning labels, but I'm going to go ahead and use them so that we can convey
00:17:53
Speaker
Concepts and ideas because there's no other way to do that without using words. So if you guys are Offended by functioning labels, I apologize but like for a more high-functioning Individual, you know a lot of the things I think another issue is that you know if you have a higher level of intelligence, you know people think that you should just be able to Get on just fine
00:18:17
Speaker
But studies have shown that you can have a really high level of intelligence. You could have gone to college. You could do really well in school. But if you aren't able to get on socially, you are still not going to have the same career opportunities, the same advancement opportunities. The social communication and interaction challenges that we face are just huge.
00:18:48
Speaker
But people think that they shouldn't exist because while you can put full sentences together, you can interact. And I think people forget too that there's this whole caveat of people on the spectrum that are in the middle. So many people think that you're either
00:19:10
Speaker
lower, you know, lower level of intelligence, or you are the Sheldon Cooper theoretical physicist doing math on chalkboards. And it's like, actually, most of us are just in the middle. And we're regular people with a regular amount of intelligence, you know what I'm saying? So it's just like, yeah, being stuck in the middle, I guess I would say that that's the issue.
00:19:35
Speaker
Like I can definitely see the impact of it, particularly sort of within the workplace, because albeit probably most organizations would like to say that they are, you know, they hire people based on merit, but the interview stage is there for a reason. It's to like see what kind of person you are. And quite often people make a lot of thin slice judgments about autistic people.
00:20:04
Speaker
um they interpret some of our outward presentations and autistic traits as negative personality traits like our eye contact as being perhaps a bit aloof uninterested unfocused or um shifty or shady or unsociable or anxious you know people can interpret that aspect of our um those aspects of our being as negative personality traits which is um
00:20:32
Speaker
And also when you were talking about people making assumptions about what your needs are, I think that's also something that I've experienced quite a lot. It's quite difficult to
00:20:48
Speaker
get people to understand that some areas in life is just way too hard for you, like for me the social, emotional, communicational aspects of autism isn't something that I have a lot of difficulties with when it comes to presenting, when it comes to like doing speeches and
00:21:08
Speaker
things of that nature but people see that and then they assume that everything else in every different category of my functioning is the same. They don't understand the concept of a spiky peripheral, it's either
00:21:25
Speaker
I'm, especially in the workplace, it's either I am a vulnerable autistic person who needs to be kind of coddled or I'm completely exceptional in all of these different areas and there's like no in-between. Right. Because I do struggle a lot with those executive functioning aspects of life and it's not really something that a lot of people can kind of wrap their heads around just by speaking to me. Right.
00:21:52
Speaker
So yeah 100 100% I think that there was something else that you you said you mentioned about oh, yeah in school sort of the the intelligence aspect of it I think that that is another thing because you know, the school system is very focused on getting results and like making sure that the the kids do as well in school as possible and
00:22:19
Speaker
when you are doing well in school, they don't tend to pay a lot of attention to you and like what your needs are and things like that. And you're right, you know, quite often a lot of the kids that I used to teach, they would have very, very high levels of like logic and intelligence and skills in various subjects. But at the same time, they really struggled with the social emotional side of stuff.
00:22:48
Speaker
Yep. And they do typically talk about that's one of the reasons why girls get missed too, you know, um, is because they're not typically being the troublemakers. They're just the quiet, you know, girls, but this applies to boys too. But if they're not causing issues and being troublemakers, it's usually the, you know, squeaky wheel that gets greased or whatever that seems. Um, and, and so, you know, there's, there's this whole, um, swath of,
00:23:17
Speaker
children that are just getting ignored and getting missed if they're well behaved and doing okay in school and making good grades. And I know that that probably applies to a lot of people. And yes, absolutely with the spiky profile.
00:23:30
Speaker
That is absolutely a thing. I talked about how growing up, my brother used to show me off to people because I could do these little slide puzzles within seconds at a very young age. I played violin by ear. I won statewide essays. I was very good with English, but then I couldn't tell time on a clock. I was years behind in
00:24:00
Speaker
math and so you know that translates into like you were talking about like if people see you do as an adult they see you do okay in one area they assume that you do okay in every area or like you said or they might tend
Late Diagnosis and Self-Accommodation
00:24:17
Speaker
to swing to the other side and infantilize you and stuff like that so it's it's it's tough um
00:24:25
Speaker
And I'm not claiming to have the same struggles as a higher support needs person at all. But we definitely need to be recognized for having some needs.
00:24:38
Speaker
I think perhaps another one there would be under not having a diagnosis. I think that's one thing like partly due to this being kind of invisible to a lot of people or not easily picked up on. It can lead a lot of us to sort of go through life, not actually having that diagnosis, not realizing that we're autistic and we have these needs and
00:25:09
Speaker
I think it comes under the label of masking and things like that, and I do want to touch on that. I think as well, when it comes to actually getting support, I think one of the biggest questions or worries or concerns that people have is they go for all of this effort to go for a diagnosis or self-identify or whatever way they want to go about it.
00:25:37
Speaker
And they're thinking, okay, so if I do this, what is it going to do other than tell me that I'm officially autistic or something like that under the diagnosis? Is there any actual supports that I can get? And the majority of the support in the UK is like,
00:25:54
Speaker
There's a lot before you're 18. There's very minimal up until the age of about 25. But after that, there's, depending on where you live, there's a very variable degree of what you can actually access in terms of support. Yeah, having having a diagnosis, I think, you know, absolutely matters, even outside of support needs, but just like externally, but like the
00:26:21
Speaker
support you are able to provide yourself and the patience and understanding that you're able to have for yourself afterward too, you know, because I did have all of the same struggles before my diagnosis with, you know, noise bothering me. And I just really thought that I was just like an angry old
00:26:41
Speaker
lady stuck in a young person's body because I didn't understand why noises. You think like everyone's the same, like everyone experiences the same, but they're just like... So I did not. I knew that I knew everybody didn't have the same struggles that I did. I just didn't know why. You know, I just, I thought I was, I just thought I was a bad person making bad decisions and just choosing to let noise bother me and just choosing to, you know, be bothered by lights. You know, I,
00:27:11
Speaker
It sounds stupid, but that's how it was for me. And so I was able to make accommodations for myself, like wearing loop earplugs and wearing sunglasses if I need to after getting my diagnosis and understanding why I am the way that I am. And I was able to start setting some boundaries and limiting some of my social interactions and stuff like that, which is super important.
00:27:39
Speaker
you know, and as far as like, you know, accommodations go for like in the workplace and schools and stuff like that. I actually haven't had to deal too much with that. But I feel like I'm pretty easy going. I feel like all I would ask people is like patients and knowing like, hey, probably, you know, if I had to go back and work in an office again, I may not want to go out to after work drinks with you guys, but please don't take it personally. It's because
00:28:06
Speaker
I'm spent and I don't want to hang out with you. I just need patience and grace. All the accommodations I'm asking for is patience and grace, but it's going to differ from person to person. But just having that level of understanding is pretty huge for me.
00:28:25
Speaker
the lack of judgment kind of attitude. Don't make initial judgments, you know. I think there was something that we were talking about in a previous stream, like the difficulty of... I think for a lot of us, we can
00:28:41
Speaker
explain ourselves and explain why people might make some perceptions of us but a lot of people don't like bring it up like if there's some kind of miscommunication or someone's interpreted something in a way it's not very often unless they're a very direct person that they'll outright say it and allow you to sort of explain why that difference has happened in a sense
00:29:10
Speaker
I think as well, I think there was something that you mentioned about self advocacy. And I think that that can be quite a tall task because even if you do have a diagnosis, you can show people sort of on paper, look, I am autistic.
00:29:27
Speaker
Some people don't wanna hear it. Some people just, it doesn't add up in their brain. They don't wanna accept that you're autistic. That kind of cognitive dissonance occurs for them when they look at you and then they think of someone that they know who has a perhaps high support needs child or individual that's under that care. And to some people it can kind of come across as like,
00:29:54
Speaker
sovereign offense or inappropriate or they just don't want to They just they don't want to accept it and and so actually going ahead and like Advocating for yourself and getting your needs max sometimes can be a really really tall task I think well and I can say for me personally most of my family does not know about my diagnosis because I
00:30:23
Speaker
you know, especially like older generations, unfortunately, they think of autism as one way, which is like the high support needs. And so I feel like there would probably be some disbelief there because the people that know me best have seen me masking my whole life. They don't see the real me behind closed doors. And so, you know, it's just one of those things that, you know, like, honestly, most of the people in my life don't even know that I have this YouTube channel.
00:30:52
Speaker
Not that I'm like secretive about it or hiding it from them But it's just you know, it's a lot to explain to somebody who doesn't understand What that looks like so to be honest with you like, you know me personally I haven't even really there's a few Few people in my family that knows my sister knows I Think that's about it Wow, yeah
00:31:18
Speaker
It's very different to me. Everybody that I know knows that I am. It's no secret. Being diagnosed younger probably afforded you that. And so for me, not getting diagnosed until I was 39 years old, my friends, colleagues, family, connections, they've all seen the masked version of myself
00:31:46
Speaker
And so it would be kind of hard to explain, but I do think people are kind of beginning to learn more about it and awareness is spreading and people I think are having a lot more patience with trying to understand some of these different pathologies, if you will, which is great, because it definitely wasn't like that when I was growing up in the 80s.
00:32:13
Speaker
90s. It wasn't as accepting as people are now, I guess I would say. So we're making some changes in an upward trend, I feel like, in the right direction. It's just going to take us quite a while to get there.
00:32:30
Speaker
I did mention about autistic masking at one point. Masking is something that tends to be quite a large component of a lot of people, especially late diagnosed individuals sort of throughout their life. And imagine it's something that perhaps lowest support needs individuals might sort of experience a little bit more.
00:32:56
Speaker
So I think it would be worth to talk about, and what kind of impact do you think that this kind of masking has on a person's wellbeing?
Mental Toll of Masking and Social Camouflage
00:33:06
Speaker
And like, I can imagine that you've got some experiences with that. Oh yeah, I've had a lot of practice, you know. I think we take a huge mental toll from internalizing our struggles, you know, because they're unseen.
00:33:23
Speaker
And I think that masking is a constant cognitive effort that is another thing that is unseen that leads to real life exhaustion. And, you know, I always hear people saying, well, you know, everybody masks, you know, if somebody's at a professional conference, they're going to act differently than they would at home.
00:33:50
Speaker
And to a certain extent, yes, that's true with neurotypicals. They might act differently in different situations, but for a diagnosed autistic person, it is constant. We are hiding who we are. We're not just acting socially appropriate for the social situation. We are literally trying to hide
00:34:19
Speaker
how different we feel and trying to put on a human suit and feel less alien and to fit in. And again, that's not because we care for most autistic people. It's not actually a social motivation cause, it's a survival mechanism that they're just trying to survive.
00:34:47
Speaker
for autistic people, the mask is something that they wear almost all the time. And they are hardly ever able to put it down. And it's absolutely exhausting. And it it definitely takes a mental toll on your perception of yourself. And it takes a physical toll in regard to exhaustion,
00:35:16
Speaker
And it has a lot of effects on the individual by masking all the time, for sure.
00:35:28
Speaker
yeah i think um you know another aspect of that kind of masking is sort of self self perception self identity i think for a lot of people who have been masking for a long time they even do it somewhat to themselves i guess and
00:35:47
Speaker
I haven't experienced masking throughout my entire life, but for a long time, probably up into my late teens, I didn't mask at all. Under the umbrella of social camouflage, you have compensation, assimilation, and masking. Masking is that hiding of yourself in front of other people.
00:36:14
Speaker
But what I did is I compensated. So the way that I compensated was by avoiding social interaction and being very, very quiet.
00:36:27
Speaker
And that was kind of the way that I sort of hid myself a little bit, just by not really engaging with people as much. But when I went into my twenties, when I went to university, quickly found out it's quite hard to make friends as an adult. It's quite hard to like go dating, find a relationship as an adult and
00:36:51
Speaker
I had a lot of insecurities about myself and how I presented and I started masking during that time and it really had a real negative impact on me because you kind of
00:37:09
Speaker
some degree it's like the whole thing with people like faking it to the make it kind of thing and that's that mentality kind of embedded itself within me a little bit and it just led to me masking and
00:37:24
Speaker
made social interaction just very stressful, as you said, because it's like when you are masking, you're changing your body language, your facial expressions, what you talk about, aspects of your personality, all of those different things at the same time as trying to communicate and process what someone's saying to you and producing a response. So it's the energy demand of a social situation just
00:37:52
Speaker
skyrockets. Yeah. And it makes it very unenjoyable. Yeah. I really enjoy it as much. Yeah. You, you really nailed it when you talked about, you know, all the things that we have to be mindful of and pay attention to what they're saying. Like, yeah. It's real hard, man. This is really, really hard. That might be my ADHD kicking in.
00:38:21
Speaker
I think when it comes to unmasking as well, like I think you mentioned them that you haven't really sort of unmasked around people. I've heard from a lot of people who have started to unmask that the responses from people around them, their family
00:38:42
Speaker
I even have experienced it to a certain degree is that people say that you're trying to put on being autistic. It's because you're obviously making this flick of the switch thing and you're taking off the mask. People see that as you trying to put on that you're autistic because they know you as that person. Yeah, I did a whole video on that.
00:39:08
Speaker
actually one of my more favorite videos. It's not my best performing video, but it's, you know, one of my favorites. And it's called, I think I called it the Autism Actor Awards. And in that video, I talk about how after you get a diagnosis, people can absolutely start perceiving you as acting more autistic.
00:39:32
Speaker
because you start unmasking a little bit and accommodating yourself a little bit more. But really what they don't realize is that it was the whole time before your diagnosis, or at least for us late diagnosed people, I can only speak for that, that it was before that you were doing all the acting. Now you're trying to stop acting so much
00:40:00
Speaker
And they think that you are now doing the acting. And there's a frequency illusion that plays into it and recency illusions that if you, of course, after you get diagnosed and you start making all these connections about why you are the way that you are and you start having an explanation for all the weird quirks and behaviors and
00:40:29
Speaker
that you think and so you start even talking about it more and then people are gonna think that you're just, again, putting on a show when really you're just starting to make sense of your life for the
Misconceptions and Diagnosis Variability
00:40:44
Speaker
first time. Again, this is obviously going to resonate more with later diagnosed people. So yeah, that's the thing.
00:40:54
Speaker
No, like I can imagine. And it's difficult, isn't it? Because, you know, there are particular people out there who feel very, very strongly about
00:41:09
Speaker
sort of diagnose, like specifically something that happens when someone self-identifies as autistic, people can get very upset at them because of that. I think a really good thing to point out around sort of autism and
00:41:29
Speaker
ADHD and pretty much anything related to psychology is that the system creates categories and boundaries to put people into.
00:41:42
Speaker
diagnosis in itself is very variable on its accuracy. It's not very comfortable to hear but the variability on how accurate people can diagnose depression is not as high as you think because there needs to be some degree of
00:42:05
Speaker
sort of trusting what people say about their experiences because it's not like you can put on a brainalyzer and jump into their skin and just like see the world as as they do or you know so that there's all of those elements to it and i think you know i think just just being aware of that and just
00:42:28
Speaker
especially when it comes to making judgements about people online who you haven't met in person I think it's important not to jump to conclusions about whether someone's autistic or not or really autistic or not because it's a very very complex thing and it does require a lot of, you know, trust I don't know why I'm talking about this, just kind of doing a bit of a ramble
00:42:54
Speaker
That's what we do. It's a good conversation to have. I don't know, maybe someday Elon Musk will come out with Neuralink to help us autistic people. Maybe they'll come up with an app that will allow a neurodivergent translator app. You just talk into it and then it
00:43:21
Speaker
spits out neurotypical language that they can understand us.
00:43:27
Speaker
get on it or even a or even a device. I'd probably call the device step into their shoes device where you can just like put on like a piece of headgear and just like swap bodies for a second. They're like, feel the emotions that someone has experiencing something like that. That would freak a lot of people out if they had to step into an autistic person's shoes and think how we think for a little bit. They'd be like,
00:43:56
Speaker
That was awful. I don't ever want to do that again. Yeah, I think as well like people with like mental illness as well. I think that would be quite a big a big jump if someone actually made something like that and could actually help like let people get into the mind of and experience the feelings of being mentally ill so that they know that it's real. Yeah. Yeah. Get on it, Elon Musk. Yeah, get on it.
00:44:26
Speaker
Well, I've got one sort of topic of questions to go down. It's the one that I told you about before we got started.
00:44:37
Speaker
I think it's been important to talk about in the context of speaking about unique sort of lower support needs, adults, experiences.
Advocacy Tensions and Empathy Needs
00:44:48
Speaker
Because I've seen a lot of, as you know, in social media, like the autism community is like growing at an exponential rate in all different spheres and with
00:45:00
Speaker
that increase in people seeing that stuff you're obviously going to to get some detractors you get it with any sort of diversity related movement and there has been sort of a point of contention between two sides of
00:45:18
Speaker
the communities being the autistic adults and the autism parents advocates and at the moment I've seen some people talk about sort of use this phraseology they used to use the words severe autism now they use profound autism
00:45:38
Speaker
And they sort of, I don't really know how to explain it, but they sort of see a lot of the work that autism advocates like ourselves and other people online doing sort of overshadowing the experiences of of high support needs individuals. So do you think that our advocacy work sort of overshadows those high support needs individuals? It's a very tough
00:46:06
Speaker
So I love that you are asking this question because we need to be having more of these difficult discussions. And what I say is that I think we all just need to lend each other a little bit more compassion because, you know, on both sides, because the parents with high support needs children, you know,
00:46:37
Speaker
It's an unpopular opinion to say that there are some parents who are wanting people to feel sorry for them and feeling like their child is a burden. But it has to be so difficult. I could not imagine for one moment having to have a child that it's difficult to
00:47:06
Speaker
leave the house or go to a store. And I see a lot of people, you know, that are in the higher support needs, you know, we'll never understand what it's like to be in their shoes and to live every day with a nonverbal child or a child that, you know, every parent has a child because they want to send them out into the world to
00:47:35
Speaker
be productive citizens and to have a family and to go and live their own lives. And they have hopes and dreams for their children and to experience life. And, uh, if you have a, you know, real high support needs child, they, all those, you know, dreams for your child are lost. You still love them, but that's gotta be a really hard and heavy burden to, uh, burden maybe the wrong choice of words. But,
00:48:03
Speaker
I don't think, I think that there's a lot of things that none of us will ever fully understand from a personal level without living in their shoes. Now, are there a lot of crappy parents out there who are like, woe is me, feel sorry for me, like screw my child, but like feel sorry for me? Yes, there are. And those aren't the ones that I'm talking about here. And then on the other side, I think that these,
00:48:33
Speaker
parents need to understand that we have real needs as well and that they will never fully understand what it's like to walk in our shoes and To be told that you're smart. So you should be able to get on in the world just fine There's nothing wrong with you You know, they don't understand the exhaustion that we're literally living through every day just trying to do simple tasks like
00:49:03
Speaker
executive functioning and responding to text messages and the exhaustion that we feel with social interactions. The suicide rate is very high in the autism community. Why is that? It's not because we're doing okay. It's because we're struggling. So I think on the other side of the coin, these parents need to understand
00:49:30
Speaker
and recognize that we have real struggles too. And it's not a fixed pie. We're not, there isn't only so much support that can exist, you know, that if we say we need some support, that that takes away support from you or your child.
00:49:49
Speaker
There's enough to go around. It's not a fixed pie. And I think that we really... It's a different type of support quite often as well. Yeah. And so I just think that compassion and just trying to imagine what it might be like to live in another person's shoes and to listen would be really, really helpful. So no, we're not trying to take anything away from them. We're just trying to share our experience. And our experience is our experience.
00:50:20
Speaker
period. Indeed. Yeah. I very much agree with you. I think being in the online spaces I think more than ever from what I've seen there tends to be a lot of fighting and controversy happening in all areas of the internet and I think I'm seeing a lot more of
00:50:43
Speaker
that kind of stuff nowadays. I think one of the difficult parts of it is trying to sort of convert people into not thinking as a this or that thing and just being aware that it's
00:51:00
Speaker
that there is differences between people. And, you know, it's gonna, it's gonna vary in how it progresses. And what you said, particularly about sort of the the suicide rates, like the level of mental, mental health capabilities and addiction and struggles with work and everything like that, it can be something that a lot of autistic people have a lot of difficulty with, with lower support needs individuals as, as well.
00:51:27
Speaker
And it was definitely affected by the fact that they took away the term Asperger's and, you know, put it in with autism.
Complexity within the Autism Spectrum
00:51:38
Speaker
And I know that we're just touching on all the hot topic issues here, but, you know, that's going to take a lot of time for people to catch up to and understand as well. And I do think that it is very interesting. I will say this, that we have
00:51:56
Speaker
eight different types of narcissism that have very different distinct categorizations of traits. We have different types of ADHD. We have different types of anxiety, but then they're trying to lump everything into one umbrella of autism when we can all look very, very different.
00:52:24
Speaker
And so I think that's worth communicating to people too, that we need to extend more grace in that area because when we have these minute categories of all these different pathologies that people get handed, but autism with its many different facets is all just squished under one label.
00:52:46
Speaker
I think that it's easy for people to understand too why some might say like, Oh, you have real autism and you don't have real autism. You know, what are the real autistics? I don't know. Um, so I, I understand. Um, but I think that, you know, there are some people out there who just, you know, there's, there's,
00:53:11
Speaker
crappy people out there too, you know, let's just say it like there's mean people out there. There's angry people out there and we're probably in every group, right? And we're probably never going to change their minds. So yeah, I think what I've seen particularly there was a
00:53:28
Speaker
What kind of sparked my interest in talking about this was a podcast that I reacted to by a creator called Book Angel who does a lot of stuff around trans things. There seems to be some level of controversy around them, but they had someone on the podcast talking about
00:53:51
Speaker
Autism, and I've seen it a lot particularly in with people who kind of look down on like autistic adults not like ourselves talking about our experiences as seeing it as like an aesthetic or a fashion label or like something cool and quirky like that we're just trying to put out
00:54:12
Speaker
because they see a lot of people talking about, you know, the positives and sort of the whole social model and, you know, speaking about all of those things and their perception of it, of our experience with autism is, comes from like reels and TikToks and like, you know, just autistic people living their lives, but they don't
00:54:35
Speaker
they see it as that and they kind of group it under this any particular label that works like Genzias or like Young People, you know, I mean, it's just completely it doesn't make any sense anyway, because I think the autistic community from what I've gathered is made up of people who are not in that age dynamic demographic. Yeah, I think as well.
00:55:05
Speaker
I can have an understanding for that, you know, like, because yes, it's a TikTok generation, right? And there are a lot of people who I mean, well, not a lot of people. I do think that there are perhaps some people out there who might think it's a trendy label, but not really. I think most of the people like us, you know, I didn't diagnose myself after watching one TikTok. I diagnosed myself after
00:55:33
Speaker
months and months and months of research and going to talk to an actual mental health professional and recognizing all of these traits that line up perfectly with the autism and ADHD diagnosis and really doing a lot of reflecting and researching. I didn't come to this conclusion after watching a TikTok and I don't really know a ton of people out there who are.
00:56:04
Speaker
all these kids watching tiktok and diagnosing themselves because of an instagram post or damn kids really really is that what you think people are doing it's like maybe there are some people but you could say that for pretty any any pretty much any demographic or group or anything yeah and you know what i'm gonna i'm gonna keep um i'm i'm gonna keep doing videos and i'm gonna you know and and
00:56:34
Speaker
I'm going to keep showing people what autism can look like and how we experience the world. I'm not going to worry about any haters that say you're not really autistic because we need more voices to speak up and show people what it can look like. It can look like
00:56:58
Speaker
somebody like me, it can look like somebody like you. And a lot of the other adult autistic people speaking up because we exist, we're out there. And as long as we continue to share our stories, we can start getting more people to see that it could look like this too. It's not just level three people that require substantial support. So I'm going to keep sharing my story.
00:57:28
Speaker
as well maybe to not playing devil's advocate but perhaps looking particularly at like the other side when it comes to wasn't parents i do want to put this down there that like i do have like i do i do understand it as well when it comes to
00:57:43
Speaker
like social experiences with people outside in the world you can have a lot of like other parents sort of making judgments about them or their children there's been a lot of stigma I think also for autism parents particularly around like refrigerator mother hypothesis and various things like that so
00:58:07
Speaker
It's definitely not that because I'm talking about my experiences, I'm talking specifically about, you know, perhaps lower support needs individuals does not mean that I'm like ignoring the other, the other, you know, other groups of people, because I've worked with them.
00:58:26
Speaker
And I've, you know, I understand that it can be quite difficult when it comes to teaching and educating and also parenting and that there is as well.
00:58:41
Speaker
Not quite the best routes to go down and supports available for them. I think it's really worth highlighting that. It's not like this or that us versus them kind of thing. I think the best way to view it is
00:59:01
Speaker
you know, if we can kind of pull our efforts together to like fight and advocate for things that both groups find find difficult and obviously perhaps deviate the supports needed for each one of them. I think that that would be a lot more productive. Yeah, that was the best way you could have said that, you know, instead of in group division and fighting, let's all work together to help one another and support one another and
00:59:38
Speaker
Autistic people like autistic adults in the community are always going to like get it right as well. I think I've seen a lot of bullying and confrontation and harassment between autistic adults themselves sort of in the online spaces having different ideas about autism and preferences when it comes to language and sort of the policing and the kind of
00:59:58
Speaker
That's a much better use of our efforts, I would venture to say.
01:00:07
Speaker
you know, different sort of circles within, you know, it's like when we talk about the autistic community, it's like, we're speaking about a monolith, but it's really an offshoot of lots and lots of different groups on various both on social media platforms and between social media platforms. Yeah, it's a very, very wide thing.
01:00:28
Speaker
I was reading through the comments and Ginger Blaze said, Thomas and Jen, if you were a teacher, you would notice how many more children are indeed being influenced and self-diagnosing with autism. And I think that there is some accuracy to that, absolutely. And a lot of that stems from the traits of autism being normal human traits.
Educational Efforts and Conclusion
01:00:56
Speaker
Um, when you hear someone saying like, well, you know, say like, I like schedules or I like routine. And they're like, well, I like routine, you know, I get exhausted with social interaction. And they might think like, well, I sometimes get exhausted with social interaction. And yes, that can and does happen.
01:01:17
Speaker
Um, but you know, we're not aiming to pathologize everyone. We just want the people who really truly do have it to get noticed and to get diagnosed and to get the help that they need and the ones who, you know, don't have it, then a good amount of education about what it really looks like, you know, would serve them well too. So I'm not saying that it's not a problem because it absolutely can and does happen that people are, um,
01:01:46
Speaker
You know, the potential of over-patholization, it does happen, yes. But, you know, there's obviously a lot of genuine cases out there too.
01:02:03
Speaker
along the lines of what I was saying before, it's very difficult to know, like, especially if someone does not have a lot of training or awareness or education about autism in the first place, to actually know if it is a genuine thing or not, you know, because as you said, like, no, for a lot of people, the first steps in going and getting the diagnosis is being aware and identifying with various things related to autism. So it's
01:02:31
Speaker
It is a very complex thing but I think, you know, I think a level of, you know, just
01:02:40
Speaker
understanding that it's a possibility and not having a lot of people jump jump to sort of assuming that they're not autistic and they're kind of jumping on a trend and stuff and I'm not saying that there aren't people like that who do that but I think you know unless you are you know that person very well unless you sort of have the education to be able to say yes or no I think
01:03:07
Speaker
it's important to sort of have this out there and also perhaps temper sort of opinions about it a little bit but I do understand like it's I mean it happens with everything doesn't it like people
01:03:28
Speaker
misinterpret aspects that they think that the one thing and they're not and you know, I do understand that I think You know, hopefully in my eyes one of the the things that we should really be doing particularly in the school system is having a lot more roots to educating people about just as you said about you know what it can look like and what like the
01:03:52
Speaker
criteria are and, you know, just having an awareness of different aspects like that. Yeah, I've actually been invited to speak at my son's school about it. So I, you know, yeah, so you know what I am, we can't change the whole world. And none of us should be putting that burden on ourselves. But we can do what we have the energy to do. And you know what,
01:04:20
Speaker
It's not our job to educate everyone, but if we can reach one person, whatever, you know, small steps. So, you know, my phone is at like 30%. No, it's okay. I was gonna get things wrapped up anyway. I just looked up, I was like, holy crap, it's been such a great conversation.
01:04:47
Speaker
podcasting for about an hour, but we have been on the stream for an hour and a half because we've been chatting and stuff beforehand. But one last thing that I do want to ask you before we try and wrap things up, what are three things you can think of? I'll give you some time to think if you want that you would like wider society to know about lower support needs, autistic adults. Three things, gosh,
01:05:15
Speaker
again, just like patients and kindness listen to us, you know, nothing about us without us, they're always saying, which is very important, you know, we get so much information from non autistic people who know somebody who's autistic, or they're a medical or mental health professional that deals with
01:05:44
Speaker
autism and they certainly have a seat at the table too. But if you want to know what it's really like to live with autism, then listen to us and our experience with, you know, lower support needs and recognize that it, I wish that people knew, you know, I guess for my third thing is that autism doesn't have a look.
01:06:14
Speaker
and that all the stereotypical things people think about, well, autism in general, that you're either low support needs and potentially mentally challenged, or you are a mathematical genius that can memorize an encyclopedia and solve complex math equations in your head that we are
01:06:43
Speaker
There are a ton of us in the middle, you know? So I guess I didn't take too long to think of those three things. But that's what I would say. Brilliant. Thank you, Jen.
01:06:55
Speaker
So yeah, if you guys have enjoyed this, please make sure to like, subscribe if you're on YouTube and consider becoming a member for as little as 99p per month. It's as low as I could put it. You get a lot of badges, emojis that you can use. You get to see a lot of these uncut live streams, including this one, the streams that I do over on my YouTube channel.
01:07:19
Speaker
And if you are on any of the platforms, Spotify, Apple, Google, any of those, please make sure to give it a give it a rating. Perhaps consider following for more podcasts such as this. Jen, do you have any links that you would like to share with everybody? Check me out on YouTube if you haven't already. I think that's about it. Much more concise than mine.
01:07:47
Speaker
Yeah, no, I'm not on all the podcasts. I'm not like the cool kids. You cool kids and your Apple and Spotify. You bloody, neurodivergent, quirky people with your online platforms and your reels and platforms. Get off my lawn. Yeah. Oh my God.
01:08:12
Speaker
Well, thank you very much. It's been an absolute pleasure. And I think at some point it would be lovely to have you on again to talk about something else because it seems to be that a lot of people are enjoying our conversation or find it useful. And it's been an absolute pleasure. I hope you have a very lovely rest of your day and I will see you in another episode. Thanks for inviting me on. It was fun. See you later, guys. Bye.